Dancing with Monsters

Joy: Experiments in turning toward the light

2012-01-20T14:00:00.000-06:00

When I decided to commit to these positive 12 kind promises, I knew that the monsters that roar against them would start biting at my heels.

This month, as I focus on joy, pain and weariness are weighing me down. "How can I be joyous," I wonder, "when I hurt and am exhausted?"

Deep breath.

I remind myself of the second part of the promise, "...without reason." There is a wonderful history of oppressed peoples living with joy and celebration amidst their troubles. I know the human spirit is capable of it; I just need to find my way.

Tools I can use:

Music: Country and gospel music provide me with a legacy of folks using music to transform pain. (I just spent far too long on YouTube watching versions of "Mourning into Dancing") Yesterday, I finished rewriting the lyrics of "Poor Poor Pitiful Me" to be about chronic illness. Music cheers me up and gives me energy.

Color: Speaking of cheering me up, color says joy to me. For the next week, I will try to make a joyful picture each day, "fingerpainting" on my iPad.

Movement: Moving our bodies gives us joy; that's why dancing is fun. It gets a little harder for me, as I can't voluntarily move much of my body. I can however chair dance. I can wiggle my body to music. This gets me music and movement simultaneously!

Play: a friend of mine sent me this video, reminding me of the importance of play. I am strategizing how to increase games and silliness in my everyday life.

There is a fullness in the moment of play that can be considered a way in which the universe is expressing its own magnificence and joy. In a moment of deep play, in a moment of deep love, in a moment of deep celebration, that's why the universe exists, There. Not for what it leads to, but for that moment. -- Brian Swimme

I'll report next week on the results of these experiments.

Joy is My Lesson

2012-01-13T13:45:00.000-06:00

My kind promise to myself for this month is to live joyfully without reason.

In early January, I wondered whether to choose a different promise next. My mother died at the end of December. Perhaps joy would be hard to come by or an inappropriate thing for which to reach. I know my mother loved me and I know that a loving mother wants her child to be happy. I added the words "without reason" to this promise precisely because I want to learn how to be joyful in the midst of hardship, how to live with joy despite the circumstances. So here we go.

My first task, with each of these themes, is to search for appropriate quotes and load them on Twitter. (Yes, I use a Twitter buffer called Twuffer rather than posting live.) As I was puzzling how to be joyful, I ran across this quote:

It made me think of A.J. Muste's famous line, "there is no way to peace—peace is the way." It will not serve me to overthink this joy thing.

There is no way to joy. Joy is the way.

(I need to lose my inner Mary Poppins!)

Forgiveness and Chronic Illness

2012-01-13T13:16:00.000-06:00

I can't leave the topic of forgiveness without saying a few words about forgiveness and chronic illness.

It is easy for me to feel I did something that caused me to become ill or, since my illness is progressive, something that's making it worse. Perhaps if I hadn't been so stressed as a 20-year-old, the disease would've taken longer to appear. Perhaps if I'd stayed on that special diet, I wouldn't be using a wheelchair today. You get the idea.

Cindy Hively, a teacher of mine, recently wrote "No matter what some people may say, your illness is not your fault!" Reading those words, I felt a knot inside me loosen.

As a person who faces health issues...
I forgive myself. I have done my best.
I forgive my body. It has carried me through this life, responding as well as it can to the changes within it.
I forgive healthy people who walk without thinking about it, who complain that they ate too much, who type on keyboards without realizing the miracle.
I even forgive the disease. Some DNA quirk responded to an environmental trigger and here we are.

No harm was meant.

Forgiving with wild abandon means that I embrace us all tenderly and love us immensely.

Forgiveness and Letting Go

2012-01-04T17:07:00.001-06:00

Whether it's forgiving myself or someone else, I've discovered it's a practice.

I love practice. Have I mentioned that before? Forgiveness is built into practice.

I plan to do something. (Intention)
I make an effort to do it. (Action)
It doesn't go the way I think it "should" go. (Judgment)
I let go of my ideas about what should have happened. (Mercy)
I reset or re-envision my intention. (Resilience)
Repeat.

Watching myself around forgiveness, I have found an unfortunate tendency to get stuck on step three. I judge. I try to let go, but it really shouldn't have gone the way it did and it's really not my fault, but if I'd only done it differently…

The image that came to mind is of carrying around a stone. I set it down for seconds and then, compulsively pick it up again.

Forgiveness becomes a practice of letting it go and letting it go and letting it go.

Angel Sighting

I first heard Mary Johnson's story on the CBS news. A short time later, I was delighted to watch it from a different angle as as a trailer promoting one of my favorite art experiments, The SMOOCH Project.

Mary teaches me that "unforgivable" may not exist.

What Does Forgiveness Look Like?

2011-12-16T14:39:00.000-06:00

I've asked the non-verbal part of my brain to tell me what it knows about forgiveness.

You may have noticed that I am highly verbal. I remember, as a child, narrating my life out loud. ("She walked across the street." I remember exactly what street I was crossing when I realized I was narrating.) My tendency toward the verbal is the reason I'm a writer. As soon as I've written it down, I know what I'm thinking. Before that, it's a bit vague.

On the other hand, if I put words around something, it becomes trapped. For instance, if I call something "unforgivable," it's hard to open to other possibilities.

My first image of forgiveness was light flowing through an open heart.

I wasn't happy, however, with the painting. I hardly ever like my paintings when they include known symbols or are representational. (In addition, something about this yellow does not say "light" to me…)

My next try

was more successful. It's prettier and it taught me more. This painting tells me that forgiveness is a softening, an opening. Sharp bits still exists, but now they give energy to the whole instead of making it hard and inflexible. Thinking about forgiveness as a process produced this:

On the left, the darknesses of life are pressing in on the light. What is unforgiven causes shadow and constriction.

In the center, forgiveness begins. The darkness is breaking up. Light is spreading, but things are chaotic and unsettled.

On the right is forgiveness. Light shines throughout. Though darkness is present, it has become a part of the whole.

The light shines in the darkness, and the darkness has not overcome it. (John 1:5)

Forgiveness—Early Observations and Experiments

2011-12-09T15:11:00.000-06:00

My kind promise is "to forgive with wild abandon." I chose the phrase because I want to forgive with extreme generosity. I don't imagine that I will forgive instantly and effortlessly, but I want to forgive frequently. I want the time between offense and forgiveness to get shorter and shorter, so that the cost to my soul and psyche gets smaller.

We forgive to return ourselves to wholeness.

“To forgive is to set a prisoner free and discover that the prisoner was you.” -- Lewis B. Smedes

How is forgiveness showing up in my life right now?

A friend of mine was describing a situation with her stepdaughter. The younger woman had arrived from out of town for a visit with a companion she was specifically asked not to bring at an hour much later than she was expected. She was sent to a hotel, rather than being invited home. Hearing the story, I (silently) had many judgments about my friend’s actions which I broadened to her character in general.
A man working for me did not do what I asked him to do. He made an effort, but the results were not what I had in mind. I told my husband how dissatisfied I was and what an idiot the worker was not to have understood how to do it right. Then I realized that the man was not (as I thought) out of the house and may have overheard my harsh words.
After both of these situations, I felt terrible for my own tendencies to judge. In fact, the idea that you are continuing to read words written by such a flawed character is astounding.

Simple vignettes, but they are rich with lessons about forgiveness.

Expectations: I have ideas about How Things are Supposed to Go. My friend should have responded to the situation as I would. My employee should have understood what I had in mind immediately.
Judgments of others: if they don't do it my way, they're wrong. Not only that, but their wrongness reflects defects in character.
Judgments of myself: to take offense means I am A Bad Person, as does having judgments about the situation or the other person. Saying anything about the offense and/or at the judgments compounds my Badness.

How could it work differently?

Would it be possible to meet life without expectations? I'm not sure…
Having judgments seems like a human activity. I don't think I will stop having judgments. I can become more aware of the judgments as they arise.
Once I notice a judgment, I can decide what to do about it, including whether or not to say something. In the first example above, it doesn't matter that I would've handled things differently. In the second example, perhaps I needed to better explain the results I wanted.

Experiments—try thinking:

I'm open to this moment. The next moment also will be a surprise.
Whoa, look at all those judgments I'm having! I'm good at being human.
She did it differently; that doesn't mean she did it wrong.

It's all in how you look at it…

2011-12-02T15:26:00.000-06:00

Art Every Day Month is complete.

"Which way is up?" my husband asked on Day 30. He went on to explain that if he looks at the painting one way people are on their knees in Islamic prayer. If he looks at it another way, the crowd is looking up. I was just painting colors and had no idea there were people involved.

Several times this month, I have admonished myself not to use so much water. Also on Day 30, puddles on the paperwork threatened to spill over onto the table . I dabbed a puddle with a tissue and like the textural result. The painting became about textures... An emergency response became a goal.

Art reminds me to be in the moment and that there are no mistakes .

Day 26

Day 27

Day 28

Day 29

Day 30

Visual Journaling (Art Every Day Month, week 4)

2011-11-26T16:56:00.000-06:00

Art Every Day Month is drawing to a close and I find myself thinking – as I did last year at this time – that I should extend this habit as a kind of visual journal. I have no illusions that I am a Great Artiste. I only know that painting delights and calms me.

Art wouldn't, for me, work as a diay. A year from now I probably won't know that on day 20 I had a migraine. Art becomes a sort of slow-cooked meditation for me. I lose myself when I'm painting and, when I review a week's worth of paintings, I can accept them without judging. That's a good process for someone like me who often mistakenly pushes against what is.

Day 19

Day 20

Day 21

Day 22

Day 23

Date 24

Date 25

Self Reflection (Art Every Day Month, week 3)

2011-11-19T12:52:00.000-06:00

Several days this week I have had to convince myself to make art. The allure of deciding I was too tired or too sick (I have a cold) was strong. Sometimes painting gave me comfort and energy. Sometimes it was a slog.
Looking back, I see a reflection of my attitude and my energy each day. Art is a mirror.

Day 11

Day 12

Day 13

Day 14

Day 15

Day 16

Day 17

Day 18

Without a Plan (Art Every Day Month, week 2)

2011-11-11T14:01:00.000-06:00

If I approach the page humbly and let colors and movement lead me, I like what happens.

If I have a vision and try to create it, the difference between thought and reality frustrates me. Initially, I don't like the results. Over time, they grow on me.

Hmmm, are there life lessons here?

Day 5

(malfunctioning marker )

Day 6

Day 7

Day 8

Day 9

Day 10

Quiz: Which two of the above were planned? ( leave a comment below )

Learning from my Left Brain (Art Every Day Month, Week 1)

2011-11-04T17:19:00.000-05:00

I have committed, once again, to Art Every Day Month. As before, I need to decide what that's going to mean to me. What can my body do this year, this day?

I have my paints and paper out on the table where they are easy to reach. I approach with no expectations, except to put paint on brush on paper. I am learning already. Here are some lessons:

Day 1: hey, I can do this!

Day 2: I am happier with abstracts and than trying to do something representational... Even if it's impressionistic. I

Day 3: Took my daughter's advice to paint a teddy bear . imimmediately disliked, but it's growing on me . I'm not sure what thlesson is yet…

Day 4: color makes me happy!

I am so wordy. This month I get to be quiet and listen...

Peaceful and at Ease

2011-10-28T16:38:00.000-05:00

May I feel peaceful and at ease.

You might think that repeating this phrase as part of meditation would be easy for me.

If I'm in the right mood, just saying the words makes my body relax the tension it's holding and settle.

If I'm in the wrong mood, however, a dry-voiced and smarmy monster begins to explain that ease is not possible for someone as disabled as I.

When I first began using a wheelchair, I comforted myself with the semi-affirmation that "Nothing is easy. Everything is a blessing." It was designed to respond to the many frustrations I felt whenever I tried to take action.

As my disease progresses, things I used to do easily become difficult. That's the truth.

So where does ease come in?

I resist the idea that it's a matter of attitude. My left hand is pretty floppy today. Manipulating the mouse takes effort. I have to move my hand consciously and think about where I am aiming the cursor. During good times, I can think about where I want the cursor to go in my hand moves it there without trouble. My mentally assuring myself that moving the mouse is easy doesn't make it so.

My daughter has been visiting a hypnotherapist to help her with math and test anxiety. I am in the sessions, listening to the therapist reassure Alexis that she can do math without upset, that it comes easily for her. She advised Alexis to say, "math is a challenge for me" instead of "math is hard." She explained that the subconscious mind believes what the conscious mind says.

I'm willing to play along, so I will stop advising myself that everything is difficult. I can believe that "many things are a challenge; there is blessing in everything."

I chose the word "feel" to be part of this phrase because I find it difficult to consider ease an absolute.

Much of my life is a challenge, but I don't have to feel distressed about it. If, as I mentioned last week, I am living with joy, that means I am turning away from disturbance.

I can feel at ease amidst challenge.

Peace is easier for me. A child of the sixties, I have always seen peace as an unquestionable asset – not worth fighting for, but worth dying for… worth living for.

Interviewer: Do you know what peace is?
Four-year-old girl: A wagon – a purple wagon that someone pulls.
.................Purple Wagon

That wise girl teaches me that peace and ease are not the opposite of effort. If the wagon is purple there is joy in the pulling.

Living with Joy

2011-10-21T15:12:00.000-05:00

The third phrase of the meditation I am learning has evolved into, "May I live with joy."

The older I get, the more I realize I am a struggler. I don't allow things to come easily. I argue with myself over ideas and only after a good argument do I find acceptance. (Maybe I should have been a lawyer…)

The third meditation phrase my teacher presented was, "May I be happy."

Simple enough, eh?

Not in this mind! As soon as I was given permission to change the phrases so they resonated more strongly with me, I went to work on that third phrase.

At the time, I was in the middle of reading "The Happiness Project." If I were willing to accept Gretchen Rubin's I'll-know-it-when-I-feel-it definition, I might've been able to live with repeating "May I be happy."

No. Happiness feels to me like a state of being that relies on outward circumstances being Just Right. Can I be happy and in pain? Not in the way I think of happiness.

Joy, on the other hand, is a deep attitude that can last for moments or a lifetime, irrespective of outward circumstances. I can feel joy and pain simultaneously. (Childbearing springs to mind. Come to think of it, so does child rearing! )

One of my options was to use "May I feel joy." That works for me, but saying, "May I live with joy" seems more of a commitment. I am choosing joy as my internal constant.

Like life itself, I will have to choose it again and again, each day, each hour, each moment.

Gaining Strength (for what?)

2011-10-14T14:36:00.001-05:00

The second phrase in the metta meditation I am learning is "May I be strong."

Since I am working the metta phrases into my stretching routine, I do have a bit of monster-mind feedback. I lean forward and stretch my left arm out thinking "May I be safe." Then I lean forward and stretch my right arm out thinking "May I be strong." My right arm is much weaker than my left. Sometimes I can barely straighten it. The monsters are quick to shriek "you're not strong. Look how weak your arm is!"

An internal argument follows about mental/emotional/spiritual strength versus physical strength. (The fact that all these voices are arguing is evidence of some kind of goofy strength.)

The definition of strength uses the word "power" liberally: "having, showing, or able to exert great bodily or muscular power… Mentally powerful or vigorous… Able, competent or powerful in a specific field… Great moral power…"

If I was working with the phrase "May I be powerful," the monsters would really be hollering! [My monsters have no doubt that power corrupts…]

The definition of power, though is "ability to do or act; capability of doing or accomplishing something."

Like everyone, my strength is limited. Like everyone, I can increase my strength by exercising...by practicing. Just as an occupational therapist has given me exercises I can do to maintain what I can of the strength in my arms, my meditation exercises will help maintain (maybe even increase) my emotional and spiritual strength.

19th-century thinker Henry David Thoreau wrote, 'It is not enough to be busy. So are the ants. The question is: What are we busy about?'"

It is wonderful that I am encouraging myself to be strong. The question is: strong enough to what? The answer lies in the rest of the metta phrases. My version is:
May I be safe.
May I be strong.
May I live with joy.
May I feel peaceful and at ease.

I am practicing to develop the strength to believe those phrases and embody them with every breath.

[Intrigued by this metta practice? Follow the work of Janice Lynne Lundy.]

Feeling Safe

2011-10-08T16:22:00.000-05:00

When I first started taking time in the middle of my work day to stretch my body, I found it difficult. I am not talking about taking a lot of time to practice a yoga pose. I downloaded a software program called Big Stretch Reminder that pops open a (customizable) window advising me to move around. (Mine says "breathe, stretch and smile.") Many times, I would just click okay and close the window. After some practice, I realize thinking "it's safe to take this time" helped me do the stretches.

Safe? Really? I work for a human-friendly nonprofit organization. My bosses frequently remind us to take lunch away from our desks, stay home when we are sick and take time to connect with our families. They are certainly not going to complain about my two-minute stretch breaks.

I am learning a new form of metta meditation. The first phrase in the quartet we are using is "May I be safe." My monsters rebelled against this idea. "There is no safety in this modern world," they shriek. "There are wars, terrorism, people who intend to do harm. Your body itself is attacking you. That's what auto immune diseases mean. Prove to us you deserve to be safe!"

Now the monsters are getting to their core message: proving, proving, proving. It is not enough to be. They want activity designed to gain approval.

Word Origin & History

approve
mid-14c., "to attest (something) with authority," from O.Fr. aprover (Fr. approuver), from L. approbare "to assent to as good, regard as good," from ad- "to" + probare "to try, test something (to find if it is good)," from probus "honest, genuine"

Ironic that I've taken an idea rooted in honesty and genuineness and made it mean trying to be better than I am. I am always busy proving myself and never rest from that effort.

I need to realize that who I am is enough. Not who I can be, not what I can accomplish, but who I am.

"We are not human beings having a spiritual experience; we are spiritual beings having a human experience." --Pierre Teilhard de Chardin

Book Response: The Happiness Project

2011-10-01T14:14:00.000-05:00

A week ago, I finished reading The Happiness Project: Or, Why I Spent a Year Trying to Sing in the Morning, Clean My Closets, Fight Right, Read Aristotle, and Generally Have More Fun by Gretchen Ruben. It was recommended to me months ago by a happy woman I met at one of my speaking gigs.
I confess there is a part of me that thinks that happiness is not cool. As a sophisticated thinker in the modern age, I should understand that happiness is an unrealistic, naïve response to life .

The world is so full of a number of things,
I'm sure we should all be as happy as kings,
and you know how happy kings are.
-James Thurber.

For her happiness project, Gretchen Rubin studied happiness and created a list of personal commandments and a resolution chart. Each month for a year, she addressed a theme (vitality, marriage, work, parenthood etc.) and acted on resolutions related to it .

In her parenthood month, for example, her resolutions were

sing in the morning
acknowledge the reality of people's feelings
be a treasure house of happy memories
make time for projects

She followed her progress in a blog and the book includes comments on the blog from readers who were participating in their own happiness projects.

This is the second book I've read this year in the new genre of "method journalism," where the writer takes a year to do something and documents her process (Eat, Pray, Love… Julie and Julia).

As someone who loves process, I find it a delightful genre. I'm also cheered that it often uses a blend of old and new publishing technologies; blogs informing books engendering websites.

The Happiness Project also satisfies the obsessive-compulsive in me. Its reliance on charts and checkmarks is comforting. Ruben identifies her Resolution Chart as perhaps the most powerful tool of her happiness project.

The project is inspirational. The book is fun and engaging.

Along the Way, Rubin began a Happiness Project Toolbox website, which is an online community containing resources and stories of people embarked on their own happiness projects. It has become a Movement!

I'm not planning to create my own happiness project, but the process has added another blossom to my "what's next" thinking bouquet.

Comfortable and Precarious

2011-09-23T14:13:00.000-05:00

She caught her breath one day

and realized the life she had expected –

one of progress and accomplishment –

was not the one encircling her.

She moved gently forward,

hands outstretched

patting the uncertainties

like a woman moving into

a darkened bedroom.

The space felt, at once,

comfortable and precarious.

She made a promise then

to kindle a light if she could

or forgive herself if she couldn't

and to explore her surroundings

its soft soothings and

its sharp surprises

until she recognized it

as her own.

Lessons from a Bur Cucumber Vine

2011-09-16T14:35:00.001-05:00

I was delighted today (Delight of the Day, in fact) to rediscover the bur cucumbers along my walking path. I noticed them last fall but was afraid they had been uprooted over the summer. My path takes me along high-voltage wires and this summer the power company did a sweep, chopping down saplings and trees under the wires. Since their hosts are gone, I thought the bur cucumbers might not have survived. They've been there all along, of course, but I didn't recognize them until the pods emerged. ("The pod things are back!")

I confess I brought a sample home so I could identify and learn about them. Now, as I write, two cucumbers sit beside me, resting against their vine and leaves, tendrils curling like party streamers.

here is a photo of bur cucumbers in the wild, taken by Judy at Lilac Gate:

I love the plump spikiness of them and the tight spirals of their tendrils.

According to Botany Photo of the Day,

“These fascinating fruits go out with a bang, having an explosive dehiscence mechanism. Each fruit contains four seeds, which develop under increasing hydrostatic pressure. If birds or small mammals don’t interfere with the fruit before it fully ripens, the fruit will expel its seeds at a speed of 11.5 m/s!”

Later in the year, the vine will support cucumber skeletons, like the one captured by Marianne Friers at Northview Diary:

That is the state in which I first noticed them, hanging in the bush like pale yellow lanterns, speaking of beauty in structure.

I shouldn't have worried about the plant's survival. "The only way to remove it permanently," says a writer at Ramshackle Solid of the genus, "is to dig up the root which can weigh up to 100 lbs."

So what lessons am I learning/remembering today from the bur cucumber vine?

It's fun to learn. After years of ignorance, I now know this plant's name (I decided not to go for scientific version) and more about it. Before I admired it from afar, but now we are friends.
Root well. The luxuriant growth of the vine…all those leaves collecting sunlight…must be directing nutrients to the root. Strong roots mean the plant can endure much, even vigilant power company employees.
If a source of support disappears, find another. The saplings on which I first noticed the vine are gone. It has exuberantly climbed bushes, the power line metal structure and other trees.
Hang on tight. Those tightly-spiraled tendrils make for a good grip.
Protect yourself. The spikes don't bother me when I touch them with my hands, but they are sharp to my lips. The fruits are poisonous, so eating them is not a good idea anyway, but Native Americans use them for medicinal purposes.
Give with enthusiasm. 11.5 m/s? That's effusive!
Dare to be a nuisance; go wild! Once I noticed it, now I realize it's everywhere. One of the descriptions I read describes it as "a nuisance like kudzu." When you seek support and hang on tight, some people will consider you a nuisance. Fie on them.
Degrade gracefully. Having released their seeds, the pods open to the air and let light shine through their structure. The reason I'm noticing such things in the plant world is, of course, because it's my own next developmental stage.

Thank you, teacher.

You didn't come into this world. You came out of it, like a wave from the ocean. --Alan Watts

It's a Wonderful Life

2011-09-09T14:56:00.000-05:00

I ended a recent newsletter with the declaration that "Adventure is moving into the unknown believing wonderful things will happen. I need to rediscover life as adventure."

I was immediately humbled by a post by John Ptacek on the Fight Like a Girl Club website that "Surrender meant discarding the idea that life is always supposed to be wonderful; it’s just supposed to be life."

"Is believing wonderful things a naïve and ridiculous approach?" I asked myself. Speaking of wonder to "cancer and disease warriors" might be unwelcome.

I thought about the word "wonderful" and its root:

won·der

verb (used without object)
to think or speculate curiously: to wonder about the origin of the solar system.
to be filled with admiration, amazement, or awe; marvel (often followed by at ): He wondered at her composure in such a crisis.
to doubt: I wonder if she'll really get here.

Wonderful –Full of wonder: full of curiosity, admiration, amazement, awe, doubt.

A couple days after writing the newsletter I went to our local Renaissance Festival, a good place for an adventure. We enjoyed laughing at our favorite acts, watching the dancers, listening to music, admiring the people… It was wonderful. We did not enjoy the dust, the uneven ground, the crowds... It was wonderful.

Wonder is a word that encompasses bright and dark. Adventure is like that too. It doesn't force things to be positive or negative; it allows for ambiguity. It allows for life.

Life: there is no app for that…

2011-09-02T15:48:00.000-05:00

My colleagues are excited because there is a new app for finding child care in Kentucky. A new item on my paid work to do list is to figure out how we would do something similar for Minnesota. It would be possible to build a mobile website with almost identical functionality, but that wouldn't have the newsworthiness…the packaging...the glamour of an app.

We look for others to simplify our choices, gather things together and give us step-by-step instructions. It's easier that way, but is it better?

About ten days ago I was ambushed by a head cold. My sweetly regulated life went out the window while I spent time with the Kleenex box. No work. No exercising. No grocery shopping. All my habits…good and bad…went out the window.

I could tell I was getting better when I started noticing how dirty the floors were, when I started feeling guilty about what wasn't getting done. Guilt as a sign of health...sheesh!

The experience was, however, a good reminder of how life works:

life is full of the unexpected
life is frequently messy
life includes complicated choices
life comes at us in little pieces…we can choose to find wholeness
instructions may be helpful, but are never complete or sufficiently customized

There is, in short, no app for living. Using apps (or their old-fashioned equivalents: kits, how-to books, other people's advice) may make specific tasks easier but may rob us of rich experience.

Making our own choices, finding our own way, living our own lives we move into deep, authentic being.

Small Joy of the Week

2011-08-19T15:03:00.000-05:00

A few weeks ago I was out of the office and returned to find a note on my desk from a coworker: "I borrowed your computer." My keyboard, which has been grubby and disgusting since I started work there five years ago, had been cleaned. I have, over the years, tried to clean the keyboard with no success. Now it is sparkling white. (Cube neighbors tell me she used hand sanitizer to clean the keyboard. Does that make sense?)

The clean keyboard is wonderful. Every time I see it, I rejoice. That feeling may wear off someday, but it hasn't so far. (Thank you, Cory, for changing my life!)

I have a practice I call Delight of the Day. It is simply to notice one thing each day that delights me. Watching for that one thing causes me to do what psychologists call "positive scanning." It causes me to practice the twelve-step slogan "look for the good."

I'm going to add to that practice one called Small Joy of the Week. It is to change one object or habit in a way that improves my life. For instance, this week I'm going to clean the keyboard on my home computer AND (I'm going for two) I'm going to give myself permission to use the guest towel in the bathroom when I dry my hands instead of the harder-to-reach bath towel. Those are small changes, but I think they may have a significant impact on my mood.

[Addendum to my last blog post: I understand that Japanese beetle damage does not hurt the tree itself. It just changes the appearance of the leaves.]

Beauty in Structure

2011-08-13T13:15:00.000-05:00

Trees are my teachers.

This morning I realized that the trees in our neighborhood are not, as I first thought, turning to their fall colors early.Rather, they are being eaten by Japanese Beetles. The beetles start eating at the top of the tree and work their way down. From a distance, it looks like this:

photo at laTURF

If you look closely at the leaves, the beetles have "skeletonized" them, removing the pulpy areas and leaving the fibrous ones.


photo by Rachel Wetzler. A Bit of Yellow… Beautiful quilts!

So there I am, simultaneously marveling at the beauty of these lace-like leaves and sorrowing over the health of the trees.

I am left with the determination to strengthen and beautify my own underlying structure.

2011-08-05T12:18:00.000-05:00

I have been mulling over this feeling of being stuck I've had recently. The good news is that I feel like what Havi Brooks calls a "tiny sweet thing" is being born. The bad news is that stuck is an uncomfortable feeling. I have a (possibly unhealthy) attachment to productivity and progress and stuck is neither of those.

I ride a paratransit bus two days a week. This bus picks me up at home and takes me to work. In between those two points it goes anywhere on the east side of the Metro area, picking up and dropping off other people. Yesterday, there was a woman on the bus who was pretty agitated about how far from either of her two end points the bus was taking her. I remember having the same concerns when I was a new "normal" bus rider. I would clutch the printed bus route in my hand. Every time I started to lose faith, I would check the route and learn that the bus was on its way to its target. The paratransit bus does not have a published route. Each day it goes different places. I have to trust that I will end up at my destination. As I am riding I can be worried about what's going on or I can trust that other people have the route in hand. The choice is mine.

It occurred to me yesterday that I need to be as relaxed about my stuckness as I am about my bus ride. This is part of the journey. It's not where I would have chosen to go but it may, in the end, get me where I need to go. It's all about trust.

Dog Days and my Sorry-Self Monster

2011-07-29T14:55:00.000-05:00

It has been ridiculously hot for several weeks in Minnesota. Our recent vacation to a cabin in Wisconsin was cut short because all we could do was sit inside with the air conditioner on and watch the condensation on the windows. (Okay, I polished off some schlocky mysteries, but that wasn't what I had in mind for the woods.)

Multiple sclerosis is infamous flaring up in the heat. Doctors used to diagnose MS by putting people in hot tubs of water ." If we had to fish you out," I heard Dr. Randall Schapiro say, "that meant you had MS ."

When the weather is hot and I try to move , I discover I can't. It's as if a layer of cement has formed around me while I sit.

Our neighbor took his dog out for a walk . They were heading down the sidewalk toward their front door when the dog , deciding she had had enough, flopped down in the grass . The owner smiled indulgently at the dog and let her lie. After a couple of minutes, he tugged on the dog's leash, urging her toward the door. The dog didn't move. The owner tugged harder. The dog raised her head, looked at the owner, and then put her head back in the grass. The owner bent over, picked up the dog and carried her inside. I mentally applauded the dog for using animal wisdom to understand this was a day for lying in the grass.

Shut inside last winter by cold and snow, I dreamed of summer trips to nearby parks. I thought I could breathe nature into my soul this summer so that I could make it through winter months of being shut inside. So far, it's not working. Too hot. Too hard to breathe.

If I want to go beyond wheelchair range, I have to plan my trip three days in advance because of paratransit rules. Disability requires advance planning. Too inconvenient.

At first, my Sorry-Self Monster made a case for how sad it is that I cannot, like a dog, decide on impulse to lie in the grass. My first instinct is to tell the monster to stop being such a wuss. This will make it wail louder. Not a useful response on my part.

What can I do instead?

First of all, pat the poor monster on the shoulder and give it a hug. Honestly, this is not easy. Healthy people go off to the beach or the woods or Machu Picchu on a whim. (Okay, maybe not that last one…) My point is that space must be made for those feelings of hurt and anger. The monster has a right to its feelings.

What is at the core of this fantasy? I envision myself living it: a park because that makes it accessible. Trees and quiet. Greenness and critters to watch. Extra points if I haven't been there before.

I came close last week when I went to Carver Lake. It's within wheelchair distance and met all the requirements except for the quiet. Because it's a city park and it was a Saturday, there were too many engine noises and a bit of human hubhub. If I had gone earlier in the morning I would have gotten everything but the extra points.

Short-term plan: return to Carver Lake early on a weekday morning. (I'll be late to work, but it will help my mental health so much I will be more productive when I get to my desk.)

Thinking about the big picture, I know I am nourished by nature and the arts. The sensible thing to do (after all, I have a Sensible Monster too) would be to do arts-related things in the winter and nature-related things in the summer. While my soul requires constant care and feeding, the Big Things don't have to happen that often.

If I make a Fill-the-bucket date once a month, I bet that would keep me happy.

Long-term plan: each month, plan a Fill-the-bucket outing for the next month, taking likely weather into account. (I just did some surfing about nature centers near me to which I could get paratransit or rides.) Since it's near the end of the month, I will plan now for August.

(I am pleased to see that most Wikipedia dog days dates are over by late August. I am ready for some cool fall air! )

Monitoring my pulse

2011-07-15T15:24:00.000-05:00

I am in the middle of reading The Power of Full Engagement. It may be a life-changing book for me. Authors Jim Loehr and Tony Schwartz normally work with world-class athletes and high-powered business people, but I suspect their ideas may be even more powerful for someone like me who lives with chronic illness.

"To maintain a powerful pulse in our lives," they say, "we must learn how to rhythmically spend and renew energy."

Last week, I emerged from a "stuck place" to a few days of fun and energetic visioning about what's next for me. Yesterday, I started feeling like a worn-out dishrag. I have noticed – and resisted – this rhythm before. I want to be doing-doing-doing, creating-creating-creating. I love those straight line upward-sloping graphs.

That is not my life. Maybe it's not anybody's life.

Life has a pulse. Inhale. Exhale. Push. Relax.

Often, for me, days of optimism and energy are followed by days with migraine, where I sit using the television to distract myself from the pain.

I noticed after my written complaint session of 10 days ago that I had an immediate surge of energy. What other activities, I wondered, have such immed palpable effects on me?

Thus far, I have just been observing the rise and fall of energy across the day, affected by water and food intake, affected by movement, affected by weather. The idea of learning to manage my energy by creating new spending and recovery habits is exciting.

Stuck Places...Waiting for What's Next

2011-07-08T15:36:00.000-05:00

I haven't written a blog entry since June 17. It feels like forever and just yesterday. At first, it seemed about "circumstances beyond my control." My computer went belly up two weeks in a row. My workplace became crazy-busy preparing for a possible state government shutdown (we are partially funded by the state). I was invited to preach and was writing a new sermon (A Message from the Earlobe [PDF])...intentions were good, but follow through was poor.

As the pressure receded, however, I found myself unsure of what to write about. I surfed the web for ideas, but everything seemed slightly wrong. I realized that I was Not Writing. For me, that's a symptom of declining mental health.

On Wednesday, I wrote a journal entry listing everything that has been acting as a stressor in my life. It was very cathartic. I immediately felt my energy begin moving. It is as if, over the last two weeks, my soul has been caught in a stagnant pool created by the broken branches of each hardship.

Still, I am not quite ready to move on. I have a sense of possibilities… Things unfolding… Things about to change… But they are in the unformed mist of becoming.

Minnesota's governor and legislature cannot agree on a budget with which to move forward. Lacking a budget, non-essential state services have been suspended. My internal and external environments are mirroring each other. Waiting for a shift…Waiting to move forward.

I am not known for my patience. This is a hard place for me to be. But, as the saying goes, "you can't push the river." I created some guidelines to help me through this:

Keep (privately) venting.
Part of the reason for the stuckness is that I let the stress buildup occur. It's an easy thing to do when busy-ness is one of the stressors. I need regular recovery practices and – though I have them – I often don't do them. This would be a good time to recommit to healthy living.
Connect with others.
I went into the office yesterday and realized that one of our jobs during the partial shutdown is to sustain each other. I have a supportive workplace so it's happening naturally. Share the latest shutdown news; describe what non-essential tasks we have found to do; discuss our hopes/plans for After. I need to do this with the more personal issues included in my stress hairball. (Note: If I haven't done #1, #2 may degenerate into a whining fest that does more harm than good.)
Find humor.
My family has recently taken to recording and watching "Drew Carey's Improv-A-Ganza." It's creative and funny. Silliness is a good activity during times of waiting. It helps put things in perspective.
Keep picking at it… But don't only pick at it.
My mother always told me not to pick at my scabs, but this is different. If I avoid the situations that are tangling me up, they will remain tangled. On the other hand, if I think obsessively about them, I will remain in the tangle. Instead, I have to tease the mess apart strand by strand, taking breaks when I feel myself getting lost or frustrated.
Have faith; spring will come.
There is something on the other side of this. Something is being born. As a Minnesotan, you would think I would be better at waiting through the winter for the new birth of spring. Nope. I have to coddle myself through it. I have to be reminded:

“When spring comes the grass grows by itself.” (Tao Te Ching)

To Live Until I Die

2011-06-17T11:43:00.000-05:00

I have the honor of being married to a military brat. The phrase "military brat" is not a description of behavior, but refers to someone who grew up with a parent on active duty in the military. In my case, this has meant learning to move. My husband moved often when he was a child and gets the moving itch every couple years. We have moved (by my rough count) 14 times in 29 years. We have been living in our present home for five years...a career-high. (Prior to my marriage, I had lived in the same house and town since birth.)

It took me a while to get the hang of it. Not the sorting and packing and hauling. That's fairly straightforward. Rather it's the art of holding relationships loosely in my hands and heart. In the early years, I found it difficult to form attachments, since I knew a move was likely right around the corner. With practice, I learned to go against my instincts. It was preferable, I discovered, to fall in love quickly with the people and places around me. Living without holding back served me better.

I use the same skills when it comes to living in this body. It looks likely that I will lose the use of my right (dominant) hand completely within the next five years. (My legs are already paralyzed.) I am meeting with occupational and physical therapists this afternoon to make a plan that will both accommodate and delay losses. I choose to keep loving my body even as it leaves me.

I have been watching, with mixed emotions, the drama being played out in the British press. Sir Terry Pratchett, a prolific and wonderful writer, was diagnosed with early-onset Alzheimer's in 2007. He has become an advocate of assisted suicide, volunteering to be a "test case" and producing a documentary Choosing to Die, which aired on the BBC last Tuesday night.

I am a fan of Pratchett's fantasy novels. I keep many of them on my iPod and listen nearly every night. His way of looking at the world has given me joy. Death is a recurring character in Pratchett's Discworld series. Death is compassionate, friendly (in an awkward, shy away) and charmingly baffled by human behavior. I have frequently hoped that my death would be similar to Pratchett's imaginings.

Living with a progressive incurable disease, I understand a bit of the hollow fear Pratchett must be facing as he contemplates his future. MS has cognitive effects as well as physical and I have recently felt the frustration and panic of not being able to understand something I'm sure I would have grasped a few years ago.

Concern about Pratchett's activism has come from disability rights advocates. They, like me (I'm not active enough to say "we" but maybe someday…) fear that making assisted suicide legal and comparatively easy would move insidiously toward encourged suicide.In these days of budget cuts, that's pretty scary stuff. Save yourself suffering – and the government money –by taking a "painless" way out.

I already worry (as do many people with disabilities) about the emotional, practical and financial burden my disability places on my family and those around me. I have days – at least several times a month – where I think, in frustration "I wish I would just die and get it over with." I mean it at that moment – and sometimes for days at a time – but I don't mean it permanently. Suicide is permanent.

Earlier this year I declared, "I intend to live until I die!" As soon as the words were out of my mouth I realized the deep truth of them. For me, this comes from my belief that I am part of Something Holy and that my role in this universe seems to be one of finding beauty and significance in the small, rejected and disregarded. I enjoy the polytheistic chaos Pratchett's fantasy world (who can't love Anoia, the minor goddess of Things That Stick in Drawers?), but I suspect that his views do not include being part of a greater pattern.

Having faith does not mean I think things will be easy. I already chafe at the lack of control I have over my life. Somewhere in my reading about these issues, I ran into the idea that we all have a right to die peacefully, painlessly, surrounded by our friends. That seems like the height of narcissism. Since when is death supposed to be easy and peaceful? In one midwinter bout of depression I took my wheelchair outside, planning to freeze to death. It wasn't long before the cold and discomfort drove me back inside. As biological beings, we are meant to avoid pain and distress. It's part of what keeps us alive. I expect death to be painful and uncomfortable. I applaud the efforts of modern medicine to dodge pain and discomfort (without the baclofen pump snaking to my spine I would be in much more pain than I am right now), but I expect the actual process of dying to be unpleasant. Life – and death – aren't for sissies.

My brother and his wife have been taking care of her mother, who has Alzheimer's disease, for many years now. It's not easy. Ruby requires constant care and is not who she used to be. She is, however, a gift… sometimes a joy... as is witnessing their care of her. I often think to myself, after a visit, that "I just couldn't do it." I'm not referring to the physical care (which is rugged enough) but to the patient reassurances to Ruby of where she is, where her purse is, who these people are and what's going on. It seems superhuman, but I know it's not. It is what we do to take care of each other because we love and real life is hard sometimes. Hard but rich.

After I read about Pratchett's activism, I returned to my iPod with some reservations: would I still be able to enjoy Pratchett's humor and whimsy in light of his recent activities? Of course I can. I understand the fear of loss of control that's behind a wish for assisted suicide. I understand the seductiveness of an easy end. I believe in freedom of speech and our right to live out loud.

I also believe that life is meant to be lived. We live best when we embrace – falteringly if necessary – the difficult bits. I have been thinking lately about what will constitute a "win" for me in this life. The end piece, I decided, will be to die of natural or accidental causes. Successfully dodging the suicide monster – whether it comes from frustrated exhaustion, loss of faith, or societal encouragement – will be a win. Like most wins, it will not come without training, skills and effort, but it will be worth it.

Book Response: Notes on the Need for Beauty

2011-06-10T15:33:00.000-05:00

I started to read Notes on the Need for Beauty: An Intimate Look at Essential Quality by J. Ruth Gendler in a doctor's waiting room. I immediately got a huge grin on my face that lasted until my name was called. Reading this book has been like working my way through a box of Lindor Truffles. Each chapter dissolves into luscious surprises. I plan to return to the book frequently as a source of comfort, inspiration to look more closely at the world around me and as a source of creative experiments.

Even the categories of Gendler's thought—reflected by chapter titles—surprised me. She considers light, mirrors and windows, beauty secrets, faces and masks, rags and threads, bone breath and language, cups bowls and baskets. Her love of words makes the book into music. Simple line drawings throughout speak to our nonverbal selves.

Often, Gendler explores etymology to give us a greater appreciation of the language that we use.

"Mirror, derived from the Latin "to look at, to wonder at" is cousin to admire and smile, mirage and miracle, she points out," and goes on: "mirrors bring us into mythlands, moonlands, mystery lands."

Gendler writes of beauty we can see, but also beauty we can't see.

"Love becomes a cloth two people weave together; threading and stitching connection we weave it and it weaves itself out of us."

If we think about beauty we are also thinking about ugliness. Gendler quotes a therapist who works with disturbed teenagers: "beauty comes from seeing the world without the filter of fear. Ugliness is seeing the world through fear." There is a hunger and loneliness in ugliness, Gendler says, and goes on to ponder how what is regarded as ugly is often strong.

Stories of Gendler's friends, relatives and students add to the wisdom in the book.

"An urban fifth-grader writes:
my heart, the universe
my mind, the stars
my soul, the son
my blood, the moon
my bones, the world
my skin, the ocean
my heart, the universe
and it echoes with the simplicity and authority of an ancient chant."

I am learning to read using the Kindle app on my iPad. I add bookmarks because it is an easier gesture then highlighting text. Returning to the neighborhood of my bookmarks, I find myself rebaptized in the magic of Gendler's prose. What was it, exactly, that I wanted to mark? No matter! Look here and here and here—more good thoughts. I'm gushing, I know, and I suspect there are people who would find this book boring and pointless. It is a book for those who agree:

"...by attending to beauty and enlarging our sense of beauty, we are able to live with greater appreciation, engagement, wonder, and reverence."

Quality of Life: It's All About Love

2011-05-27T16:20:00.000-05:00

I read about how doctors and psychologists are trying to create tools to evaluate and measure Quality of Life in their patients. Reminded of the Disability Rights Movement's slogan, "Nothing about us without us," I set out to create a Quality of Life inventory that could be used for individuals about themselves.

While I used the framework put forward by The Quality of Life Research Unit at the University of Toronto, I soon departed from it. For personal use, measurements and scores are unnecessary. Instead, it's more of a way of interviewing myself about my life: what's working and what I would like to see change.

When I reached for a simple definition of having quality in my life, I realized it meant answering "yes" (or at least "most of the time") to three questions:

Do I love myself?
Do I love my world?
Do I love my life?

So in the end it's all about love.

The (probably) final product is here as a Microsoft Word document and in PDF. Now I just need to integrate it into my life!

Quality of Life Inventory (first draft)

2011-05-20T16:56:00.000-05:00

In our last episode, I got completely completely tangled in my response to the test from the The Quality of Life Research Unit at the University of Toronto. I could tell that what they are doing doesn't fit for me, but I didn't know why. I suspected there were clues in the Serenity Prayer, but I was puzzled.

Things are clearer now.

Understanding My Frustration

A few investigations and experiences helped me understand where the University of Toronto's tool/model doesn't fit for me.

Beyond my control. Armed with the Serenity Prayer, I went through the Quality of Life model and identified those things which I could change. They fell into the Psychological and Spiritual Being and Leisure and Growth becoming categories–those areas where I scored highest. For most other parts of the list, I have to have significant help from other people. For a few areas I have no control at all. Not coincidentally, those are the areas in which I scored lowest. I was frustrated because I felt chastised for things over which I had no control.
Focused on the future. I like the University of Toronto'sdefinition of quality of life: the degree to which a person enjoys the important possibilities of his or her life. I am okay with Being: (who one is) and Belonging (connecting with one's environment). They define Becoming as "achieving personal goals, hopes and aspirations." With that definition, I will imagine the future, work toward it and evaluate whether I get what I want. As a person with a progressive incurable illness, I need to stay rooted in Now.
Working from the outside. During the last week, I participated in a yoga class, where the teacher guided us to pay attention to our core (straight spine,supported belly, tightened Kegel muscles) before we began each posture. I participated in an adult Christian education class where we were reminded to start with our relationship to God and move from there into outward expressions of our faith. The two traditions agreed: start inward; move outward. I understand that scientists like to move the other direction, but I am practicing the art of living.

Proposing an Alternative

If I designed a tool to help me evaluate my quality of life, how would it look?

I like the University of Toronto's definition and their major categories. I would use more open ended, opinion questions. Unlike the UT, I am not trying to create a standardized tool.

Consider this:

BEING (who one is)

Physical: What practices do I use in hygiene, exercise grooming and clothing? Are they contributing to my safety and health?
Psychological: What skills and processes do I use to adjust to change? Am I able to function cognitively to keep myself safe? How do I handle my unhelpful thoughts? How do I respond to the ups and downs of my emotions? How do I control my unhelpful impulses?
Spiritual: What do I value? What do I believe? How do I make decisions about what actions to take?

BELONGING (connections to the environment)

Physical: Do I feel at home where I live (home, work, school, community)? Is there a special place I love and visit?
Social: Who are the important people in my life? Do I feel supported, enjoyed, and/or loved by and loving toward the people around me?
Community: Who are the important groups of people in my life? Do I feel included and part of the whole in the important groups in my life?

BECOMING (what keeps one going and growing)

Practical: What do I consider my basic needs (physical, social, psychological, spiritual) and how do I meet them?
Leisure: What activities in my life promote relaxation and joy?
Growth: How do my values and beliefs nurture me? How do I maintain or improve my knowledge and skills and adapt to change?

Part of 12-step living is to take an inventory. This is my first draft, but it seems this Quality of Life
Inventory might be a good tool for me to use as I move forward in my life.

I'll "take it" and see if I am left in a more resourceful place than I was last week.

That Serenity Thing Again... (Or maybe it's something else?)

2011-05-13T17:26:00.000-05:00

Introduction

When she read the first draft of my thesis, my graduate advisor noticed that I write to figure things out. "In your next draft, " she suggested, "take the final paragraph from each of these sections, put it as the first paragraph and write from there."

Since this is a blog, you are going to get the "figuring things out" pieces too.

How I Returned to the Concept of Serenity

The Notion of Quality of Life

I recently read an article about Quality of Life and MS research and care that started me on a binge of reading about quality of life. I took a test from the The Quality of Life Research Unit at the University of Toronto.

They define quality of life as "the degree to which a person enjoys the important possibilities of his or her life." They go on to divide it into domains (being, belonging and becoming) and subdomains. "Quality of Life," they explain, "consists of the relative importance or meaning attached to each particular dimension and the extent of the person's enjoyment with respect to each dimension."

I emerged from the test with a column of scores representing importance, another column representing satisfaction and a series of scores putting me in the positive or negative for each subdomain.

While I loved reading how the researchers describe and measure Quality of Life, I was disconcerted when my test results showed my quality of life is only "adequate". My lowest scores are in the areas of physical being and belonging.My highest scores in the areas of spiritual being and growth becoming.
The Problem

"Disconcerted" is a polite way to put it. My quality of life scores were an integral part of a hissy fit that lasted several days.

See, the problem with any sort of mapping of my life (this is where I am versus this is where I'd like to be) is that I have so little ability to take action to change things. There is very little I can do on my own and while I have a lot of emotional support (for which I thank you) there are few people available to help me (for instance) repair the walls of the living room. (Living space is part of physical belonging.)

I emerged with a resolution to learn about contentment.

Contentment...

Contentment is being satisfied with what one is or has; not wanting more or anything else.

Contentment is a countercultural idea in my world. Nearly every message I see is about wanting more, wanting better, wanting different.

While I don't want to be part of that culture (and there I am wanting already), I also don't want to be apathetic. I don't want to be unresponsive to injustice or (more selfishly) to my actual needs.

Is there a middle ground between wanting and apathy?

And...Serenity

Suddenly, in a blinding flash, I realize I have come around again to the Serenity Prayer:

God, grant me the serenity to
accept the things I cannot change
the courage to change the things I can
and the wisdom to know the difference

TA-DA!!

(Sheesh! Sometimes I work so hard to get to something so simple…)

I can tell I'm not done yet, but I'm onto something. Here are some choices:

stay tuned to find out what this is all about, or
if you think you know, tell me!

The Magic of Motion

2011-05-06T14:15:00.000-05:00

Back in the day
(When I walked with difficulty)
I would watch
Others' steps.

Heel-toe, heel-toe
The ankle flexes.
The foot arches.
The leg swings.

Each pace is magic.
Each motion leaves a trail of
Fairy dust behind...
Scribbles of amazement.

Now I watch people's hands.
Look how the fingers grasp that small object!
Watch as hand and arm turn the page!
Marvel as small muscles move the pen to make letters!

At once I am filled with breathless wonder
And plunged into a sea of sadness.
My feet no longer walk.
My hands no longer write.

I hold my heart open
By celebrating the magic of motion
And forgiving myself for having to forgive
Those perpetrators unconscious of miracles unfolding.

Return to Joy (Rededication)

2011-04-28T15:54:00.000-05:00

... And they lived happily ever after?

Much as I like fairytales, there is a reason we tell them to children and not adults. By the time we are grown, we know that happiness doesn't last.

I recently went to a performance of Fidgety Fairy Tales. This group (which I highly recommend) takes fairytales, gives the main character a mental health disorder and uses theater to educate and raise awareness. I noticed their tales do not end happily ever after, but rather with everyone—hero, family and friends—improving their abilities to cope.

See, in usual fairytales, the main character gets what he or she wants and then lives happily ever after. Those of us who live with chronic conditions often can't get what we want.

Happily ever after just isn't real life.

Choosing Happiness

When I was in grad school, I discovered Barry Neil Kaufman's book, Happiness is a Choice, and his work with The Option Institute. I had been living with chronic illness for a dozen years and living with the idea that my happiness depended on external circumstances (or possibly on doing good things for others) since I was born. The idea that I could choose to be happy was revolutionary to me.

When you think about it, whenever we are happy we are making an unconscious choice. This blog post is a day early because tomorrow we are heading off for my niece's wedding. We will probably be around a lot of happy people. On the other hand, the opportunity to be unhappy will be there. The wedding is in a park. Perhaps it will rain. Perhaps it will hail. There is a building across the street reserved for the reception and the wedding can take place there if need be. If the weather is inclement, there will probably be people who choose to be unhappy about it.

My view is that while the internal gut-shift from happy to unhappy is instinctive, the decision to stay there and wallow in it can be conscious. The moment I realize that I am unhappy is the moment my mood becomes a choice.

My physical symptoms and disabilities are constantly inviting me to frustration. I get angry, fearful and sad about what I can't do or how hard it is for me to do the things I can do. Sometimes I entertain those feelings for a while. (I'll pause for a moment here to enjoy that phrase: to picture me finding sadness a comfy chair, a blankie, a warm drink. Make it comfortable and invite it to stay for a while.)

Then there is a shift and I realize what's going on and I have two choices to make: what am I going to do about it and how am I going to feel about it?

The answer to the "do" question is a combination of action (change position, take medication, get some help, etc.) and the reconciliation I wrote about last week: identifying what's different and making peace with it.

The answer to the "feel" question is to return to joy.

Outward and Inward

I checked with the dictionary. It uses joy to define happiness and vice versa. I was reaching for some kind of subtle distinction between the two when I realized that I wanted to make a point about exterior versus interior.

I can be happy/joyful without it being obvious. I don't have to be grinning and laughing. I do need to be honest with myself, though. "Fake it till you make it" works for happiness to an extent. If I make my face into a smile and follow it with happy thoughts that lead to a joyful mood, that works. If I make my face into a smile and continue to think sad or angry thoughts, that's fakery.

Sad and angry thoughts have their time and place. I find it best to feel what I'm feeling.

Part of my journey, though, is to recognize and return to the things that bring me happiness.

Lifting the little weights I use did not go well last night. Today the sky is beautiful with streaky, heavy gray clouds. I don't want to let my disappointment about my weakness yesterday keep me from noticing beauty today.

Rededicating myself to joyful living is one of the practices I choose to help me live with chronic illness.

Reconciliation and my body

2011-04-22T13:06:00.001-05:00

This week I started using a key turner to help me open the front door. Like most tools I use, I'm experimenting. I will know in a few weeks if it makes things easier.

I am constantly reconciling with and to changes in my body.

Dictionary.com has this to say about reconcile:

to cause (a person) to accept or be resigned to something not desired: He was reconciled to his fate.
to win over to friendliness; cause to become amicable: to reconcile hostile persons.
to compose or settle (a quarrel, dispute, etc.).
to bring into agreement or harmony; make compatible or consistent: to reconcile differing statements; to reconcile accounts.
to reconsecrate (a desecrated church, cemetery, etc.).
to restore (an excommunicate or penitent) to communion in a church.

Those are all aspects of what I do with my body over and over again as I live with chronic illness.

Separation

After my diagnosis, it was easy to understand the disease as the enemy and my body as my ally in the fight. As my body became more and more affected by the disease, the distinction blurred. I often find myself becoming angry at my body. It won't do what I ask it to do. It doesn't recover the way I expect it to recover. It gets in the way of what I want.

My mistake is obvious: making the body Other. I need to remember that "we" are one organism. Even the disease is "us." It is so easy for me to slip into a me versus the world mentality, but that is my imagination trying to make sense of an unlimited universe.

My favorite meaning of reconciliation is "to bring into harmony." That is also a meaning of healing.

Brokenness

When my body changes, when it stops working the way it used to and does something differently, it's easy for me to see it as wrong and broken. One of our culture's models for our bodies is to consider them machines. That's been a very useful model; we have learned to make repairs. It's not so useful when I expect my body to work the way yours does and consider the majority of bodies normal and correct and mine, because it is abnormal, of less value.

Value judgments get in the way of experiencing what is.

Reconciliation

My goal is wholeness and my practice with my body is to overcome perceptions of separation and brokenness.

Things to believe:

body, mind and spirit are convenient labels but aren't The Truth
wanting, anger and disappointment are natural and should be expected, but not encouraged
wholeness is already present

Things to do:

pay attention to and experience what is (breathe, move, feel, think, connect)
build strength (exercise, build relationships, learn)
accommodate needs (rest, use assistive devices, expert advice)

To and With

I resist the idea of "reconciling to my fate." It sounds like giving up. It speaks of resignation. At the same time, I do need to accept the reality of the situation. A physical therapist once told me, "it's not that you're not trying; the nerve signals just aren't there." I need to reconcile myself to the idea that no amount of exercise will enable me to walk again.

Reconciling with is a happier task. Friendliness, composure, agreement, restoration, consecration...Those are all lovely words to wrap around my experience.

Reconciling myself to and with my body (pardon the verbal convenience of the separation) is a necessary part of being a living sentient organism. Living with chronic illness brings it forward, but it's there in the background for all of us. Reconciliation is part of relationship and good relationships lead to celebration.

There is a truly joyful task: celebrate all of who you are body-mind-spirit. Celebrate life!

Being Sick: How Surrender becomes Incubation

2011-04-15T16:38:00.000-05:00

"Sometimes I have to just give in and be sick," I regularly tell people. They squirm in their seats. We don't like being sick. We especially don't like surrendering to being sick. This the 21st century, for heavens sake. We should be stronger-smarter-better by now.

Being ill is an invitation to wholeness. When we get attached to being healthy active go-getters we lose the balance that makes for a full life.

We need times of rest and repose, times to watch sunlight move across the room, times to pay attention to our souls. Illness invites us into such times.

Like most people, I don't enter a period of illness willingly. When I "feel like I'm coming down with something," I go into defensive mode. I go to bed early. I take extra vitamins and supplements. When it's obvious I'm getting sick, I turn to stubborn refusal:
This
Will
Not
Happen.

But sometimes it does.

As I lighten my schedule, make my apologies and buy my supplies (those three-box packs of tissues are genius), I throw a little internal tantrum. Why now? Can't it wait until there's a clear spot on my calendar?

Whether I'm ready or not, illness descends. My to-do list has just one thing on it: to give myself "what is necessary for life, health, and growth." (The definition of nourish.)

Part One: Survival and Pablum*

There are times (migraines spring to mind) when the illness is all-consuming. I am not doing anything but existing. Whatever mental or physical energy I have, I use it to provide myself with the most basic nourishment.

Rest. Sometimes discomfort disrupts sleep, but sick and tired bodies need rest.
Eat and drink what will help. Take a "long view" on this one. Chocolate may appeal to the part of one that's feeling hard done by, but broth is often a better choice. Ideally, find substances that feed both body and soul.
Medicate responsibly. There's a sweet spot between resisting medication completely and going overboard.Get professional advice and dose with caution.

Once I've lived through the tough part and start feeling some energy, I begin setting the stage for my return to activity.

Part Two: Introducing Solids

My agenda is still to nourish myself, but now I can broaden my diet. Rather than just surviving, I want to build my strength. Rather than just eating and drinking, I can return to exploring the world with all my senses.

Contemplate beauty. Bring beautiful sights, smells, sounds, textures, tastes and ideas close.
Experience caring. Connect with a friend and experience the wonderful give-and-get of love.
Laugh. Move lymph. Oxygenate organs. Release serotonin and interleukins. Practice here.

I often refer to the "being sick"part of life as incubation because the time of retreat and replenishment results in the creation of something new. Even if I can return to full physical function, I have to integrate the experience of being ill into my life. I am not the same person I would be if the illness had not occurred.

Healing is a natural result of rest and nourishment. When I've had enough of both, life calls me forward again into the world.

When Change Smacks You Upside the Head

2011-04-08T15:38:00.000-05:00

I was "out" with a bad migraine Sunday through Tuesday of this week. By out, I mean the pain was so intense I couldn't do or think. I merely survived. Though I "resumed normal activity" on Wednesday, I am still recovering.

I was planning to write about Overwhelm this week anyway; the migraine provided a refresher course.

I love change. I love the sense of expansive possibility it brings with it. I love the excitement and variety it adds to my life. I love the illusion of progress I get because things are different now.

That's all true for changes I choose. It's even partly true for some changes that are thrust upon me.

Then there are the bad news changes: friends that leave, disasters, accidents, diagnoses, migraines.Those changes, I don't love. They send me spinning.

First, there's the actual factual change. Something in my environment is different. My head hurts and I feel nauseous. I'm not used to it. It puts me off balance.

Then, there are my thoughts about the change. My wonderful human brain thinks about the past, the present and the future. In the present, I have judgments about whether the differences are good or bad. (Pain + nausea = bad.) Looking back, I have ideas about what caused the changes or what I could've done to prevent them. (Maybe that piece of chocolate was the culprit. Maybe I tried to do too much.) Looking ahead, I project how these changes will affect my life in the future. (I have a speaking gig the first weekend of next month.What if I have another migraine then? The horror!)

Thoughts beget feelings. I feel guilty and/or sad about what I should have done. I feel angry about any "badness" I identified. I feel fearful about what could happen in the future.

From one change has come weighty mental and emotional activity. To it, I add one more pair: I am exhausted and overwhelmed.

In my experience, this is the normal and natural road I travel. In my younger days, I beat myself up for not being able to avoid the thoughts and feelings. It seemed I should be able to choose not to have them.

If I'm lucky, I am evolving in that direction.

In the meantime, I try to catch the unhelpful thoughts when they begin. I try to understand the unhelpful emotions as natural descendents of the unhelpful thoughts. I try to pull myself back to the here and now and return to the facts.

Last Monday, I told myself: "the back of my head really hurts and I'm retching. It doesn't mean anything about my character or about my future. Right now, I am resting."

Calling this part of my experience "overwhelm" is helpful for me because it reminds me that I am not in control and don't need to try to be. My primary job during such times is to take care of myself and let the sensations, thoughts and feelings, come and go without embellishment.

Creating Your Own World

2011-04-01T16:31:00.000-05:00

"You paint your heaven or your hell and in you go." —Nikos Kazantzakis
"I reject your reality and substitute my own." —Adam Savage

One of the things I find spectacular about human beings is our insistence on making meaning. We make models of reality to help us understand and move through our lives. These mental models can make the world a frightening place and stifle us or they can fill the world with possibilities and excite us.

I need a model of chronic illness that allows me to endure—NO! to thrive within—its ups and downs.

A model of triumphant recovery over illness won't do it (because there is no cure).

A model of graceful surrender to a fatal illness won't do it (because I won't die from it).

The creative process includes within it the elements I find in my own life:

moments of baffling uncertainty
times of "stuckness" that I can't seem to overcome
alternating movements of failure and acceptance
rediscovering and sharing wholeness and joy

Since I have started to believe that I am participating in a creative process, my life has gotten easier. The dark clouds pass more quickly and I weather them more gracefully. I know what to do when things get tough. I notice and appreciate the good times.

It doesn't matter if I'm right.What matters is whether I am able to live resourcefully and compassionately within the model.

If I use my imagination to create a world in which I can flourish, regardless of the state of my health and my body, then I am free.

(Watch Pure Imagination from the 1971 film Willy Wonka & the Chocolate Factory.)

Book Response: How to be Sick

2011-03-25T14:56:00.000-05:00

I recently finished reading How to Be Sick: A Buddhist-Inspired Guide for the Chronically Ill and Their Caregivers by Toni Barnhard.

Barnhard has been living with CFID since 2001. She deals with significant fatigue and "flulike symptoms" daily. While I cling to twelve-step philosophy that says "We have not found it helpful to place labels on any degree of illness or health," it is easier for me to listen to her because her illness has required her to change her lifestyle. Her descriptions ring true for me as words from someone living "inside" chronic illness.

She writes of missing family events and trips, facing the ups and downs of illness and transforming isolation into solitude.

A serious Buddhist practitioner and student before her illness, Barnhard uses her knowledge and experience to respond to the challenge. I'm not a Buddhist, but I have found Buddhist philosophy helpful when coping with the changes brought by multiple sclerosis. Sometimes I found Barnhard's use of Sanskrit words made me work harder than I wanted to work, but the message was always worth the effort.

Barnhard deals with the everyday concerns of illness and offers "practices" (one of my favorite words) with which to engage them. At the end of the book, she includes a guide to using the practices to help with specific challenges.

I read the Kindle version of the book, which allows me to see what other readers chose to highlight. Some popular selections:

'' Our life is always all right,"says Zen teacher Charlotte Joko Beck. 'There's nothing wrong with it. Even if we have a horrendous problem, it's just our life."
Buddhism defines an emotion as a thought plus a physical reaction to that thought.
The essence of equanimity is accepting life as it comes to us without blaming anything or anyone-- including ourselves.
Quoting Buddhist teacher, Ajahn Chah: "if you let go of a little you will have a little peace. If you let go a lot, you will have a lot of peace. If you let go completely, you will know complete peace and freedom. Your struggles with the world will have come to an end."

It's interesting that the popular highlights are often quotes from other teachers. The value of this book for me is the way Barnhard introduces a Buddhist concept and then tells the story of how she practices with it in her life.

How to Be Sick is an authentic story that includes gentle stories and practical tools with which to respond to chronic illness.

Recommitting to beauty

2011-03-19T07:29:00.000-05:00

I am overwhelmed by the number of bloggers writing about living with chronic illness. I bump into them right and left. My monster mind says, "See? You're not special. You're a dime a dozen.No point in adding your voice to the clamor. Just be quiet."

Poor little monster, so determined to be unique in the world.

I look at pottery made by prehistoric artisans. Graceful forms. Lovely designs.They needed bowls and pitchers and canteens. That's practical. We understand that, my monster mind and I.

They needed beauty. There is where the monster and I stumble.

Why beauty? Beauty is useless. Beauty is selfish.

After a Google meander, I found an answer I like:

"The soul needs beauty because through the experience of it the soul becomes aware of its own existence" writes Rev. Lilli Nye, after noting in her sermon suggestions of animals appreciating beauty. "Our deep selves are awakened by feeling. We are able to touch something of the vastness of our being, the vastness of the universal community in which we reside."

Translating into my own shorthand, she is saying beauty is a path to God.

Nye goes on to quote Robert McAfee Brown, explaining how our instinct for beauty connects with a call to social justice:

How can [concern for] beauty and [concern for] oppression be understood together?
For us the question is, How can they be understood separately?
Concern for beauty is not a moral cop-out. It leads us firmly into the midst of all that is going on in our world.

Where beauty is apparent, we are to enjoy it.
Where there is beauty hidden, we are to unveil it.
Where there is beauty defaced, we are to restore it.
Where there is no beauty at all, we are to create it.

All of which places us in the arena where oppression occurs, where the oppressed congregate, and where we too are called to be.

Beauty connects us to God and, where we notice its hiddeness, defacement and absence, it calls us to service.

The mind-boggling acceleration of user-produced content on the Internet has been identified, pejoratively, as "The Cult of the Amateur." Here we are, millions of us, producing blogs and videos and publishing books.

Did the ancient artisans have monster minds who sneered, "everybody makes bowls. You're a dime a dozen. Don't waste the clay"?

They made their beautiful bowls, graceful in form and lovely to behold. They used them to carry water and hold food. By making them they connected to the divine and were called to serve. All these years later, we don't know their names but we are connected to them through beauty.

So here I am, making my 21st century bowls. I use them to carry thoughts and hold ideas. By making them, I connect to God and am called to serve.

I hope to make them beautiful.

Anticipating (or not) the future

2011-03-10T16:51:00.000-06:00

We are heading off to visit Walt Disney World for what may be (my husband and I have quietly admitted to each other) our last family vacation. "Last" because my health is making travel more complicated and difficult.

When I was diagnosed almost 30 years ago, the doctor told me he thought they would have a cure for multiple sclerosis in five years. I have heard that more than once over the years. I recently watched (sorry,I can't find the link) a broadcast of experts on repair of nervous system damage. The experts agreed that we may have ways to repair CNS damage in… say… five years. I have stopped believing projected timelines.

There an effort to create a website that would predict, based on the user's answers,the course of their MS. Will it bother them once and then never again? Will it come and go with aggravating inconvenience? Will it result in significant disability? Will it move so fast they ought to get their affairs in order now?

I've been asking my friends with MS and other illnesses: "would you want to know?"

Most of them say no.

Almost everything I feared MS would do to me it has done, though not as fast as I imagined it would. I would not want my 20-year-old self to know in advance.

The good news is that living into it has not been as awful as I thought it would be.

I was bothered, in the doldrums of February, by not having anything to which to look forward. We scheduled this vacation and that changed my outlook.

But what can I do next year?

If I were an enlightened creature, I could live totally in the present and not need an imagined future.

It seems to me I have about a year to develop two skills:

living in the present
anticipating the simple

Next year, as the snows mount and the temperature drops, I may have to plan a tropical escape.I can go to the Tropics at the zoo and drink something poured around a paper umbrella. I can turn up the heat (and/or get some sunlamps) and watch a movie set in the tropics.The trick is to delight in it instead of wishing it were otherwise.

I can practice those skills every day.

But first: as soon as I hit the "publish post" button, I'm heading south.

Surrender

2011-03-04T12:52:00.000-06:00

If you follow these posts, you know I have a tendency toward activity: 12 steps to do this, five reasons to do that, fill the bingo card with M&Ms...

A few nights ago, I was led in a guided meditation to imagine an encounter with a Great Healer. Imagine the healer's hands on my head or shoulders, imagine the look of compassion, imagine the message.

The Great Healer said to me: "it's all right. You don't have to try so hard."

Exhale.

I spend time in the busyness of healing: exercises, right eating, right thinking – even meditation becomes another item on the to-do list.

This message reminded me that I am not in control. I don't have to spend energy and effort being in control. No amount of self-improvement will get me into heaven.

I am called again to turn my will and my life over to the God of my understanding.

Selah

12 Steps to Creating Your Essential Life

2011-02-25T16:34:00.000-06:00

"Very little is needed to make a happy life; it is all within yourself, in your way of thinking." —Marcus Aurelius

I can't do some of the things I used to do—can't do them at all.I certainly can't do all of the things that I used to do.

Welcome to living in an aging body.

I keep returning to the idea that one of the "developmental tasks" of this stage of my life is to discover my essential life.

From Wikipedia: "In philosophy, essence is the attribute or set of attributes that make an object or substance what it fundamentally is, and which it has by necessity, and without which it loses its identity."

So how do I boil my life down to its essence?

My mother grew up during the Great Depression. She is a frugal woman. Most autumns, she would make wild grape jam. The grapes grew in abundance along the Kinnickkinnick River not far from our house. I suppose the land was owned by somebody, but we harvested wild grapes in autumn and watercress in the spring without feeling like we were stealing. My sister and I helped create the jams.

(If you haven't been around the jam making process, watch the 6 minute video "Boiling Down to Heightened Flavors: The Specialty Jams of Josephine's Feast." We didn't have her fancy copper pots [which I love], but you get the idea.)

So, with my endearing (I hope) tendency to stretch metaphor until it almost snaps, here are my steps to creating an essential life, as inspired by jam making.

Step 1 - Pick the fruit!
Make a list of the things about which you are passionate, what gives you joy, without which you imagine your life would not be your life. (You may want to check out Zen Habits' "Short but Powerful Guide to Finding Your Passion.")

Step 2 -Wash the jars and lids.
You may need to make some space in your life for the essentials. Free time. Get out of over-commitments, including those you've made to yourself. ["There was no need to do any housework at all. After four years the dirt doesn’t get any worse." —Quentin Crisp]

Step 3 -Wash and hull the fruit.
Look at your list and remove the hulls and stems.Are there things on your list that you put there because you think they ought to be there? Look at an item, say it to yourself, take a breath and pay attention to how your body is feeling. Do you feel heavy or tired or resigned? Leave on the list only those things that make you feel lighter energized or excited.

Step 4 - Crush the fruit.
When making jam, crushing the fruit gets it into manageable pieces and releases the natural pectin so it can thicken. Look at your list and define a "nibble." For instance, I am passionate about learning, but attending an eight week face-to-face college class is beyond my energy level. I can take a half-day workshop every now and then or attend a series of webinars.

Step 5 -Add the sweetener.
Different fruits require different amounts of sweetener. Some folks mix sweeter fruits with less sweet and use no artificial sweetener at all. I love listening to beautiful music and on rare occasions (someone comes to my house and plays it) I need no sweetener at all. Other times (going out to a concert) I need to add sweeteners (rest before, help with transportation) in order to make a good jam.
Step 6 - Mix the fruit with the pectin and cook to a full boil.
[Pectin, which occurs naturally in fruit, is what makes the jam "set" or thicken. The pectin you buy is natural apple pectin, but is more concentrated. Using pectin dramatically reduces the cooking time, which helps to preserve the vitamins and flavor of the fruit, and uses much less added sugar.]
What tools and tricks can help make my participation in my passion possible or easier? I love to write, but I couldn't do it these days without Dragon NaturallySpeaking from Nuance.com.

A "full boil" in this protracted metaphor is trying it in real life and paying attention to how it works.

Step 7 - Get the jars and lids sanitizing.
Are these spaces I created in my life spacious enough?Are there bits of old crud still adhering to the space I thought I cleared? I need to take another look and make sure things are really clean.

Step 8 - Add the remaining sweetener and bring to a boil again.
What about the sweetener?Maybe I thought I would be a purist and not add any, but I find myself avoiding the things I said I loved.Try adding some more sweetener. Make it easier Make it more fun..

Step 9 - Skim any excessive foam.
When too much air gets into the boil it produces foam which won't harm you but makes the jam looks scummy. Have I gone overboard in some way? Are there bits that are uncomfortable or exhausting now that I'm trying them in real life? Skim them away.

Step 10 - Test for "jell" (thickness).
In jam making, I put a little bit out and let it cool to room temperature. Is it the right consistency? In creating my essential life, I live it for a while and see if I have created the right balance between activity and rest, excitement and contentment, doing and being. Adjusting the ingredients or even remaking the jam can get it to the right consistency.

Step 11 - Fill the jars and put the lid and rings on
The size, shape and decorative nature of the jars are a matter of personal preference. It helps, though, to put some limits around each flavor, so I can appreciate each one.

Step 12 - Process the jars in the boiling water bath
The elements of my life should be surrounded by life itself, submerged beneath the roiling waters of day to day to day,stored for a while in a cool dark place and then brought out to be appreciated.

(Thanks to How to make Jam at PickYourOwn.org for jogging my memory.)

Report from last week's bingo experiment:

I thought about doing something noble ("listening to music" ) as a reward, but it was me trying to be better than I am. It turned out to be M&Ms .I did get one bingo and came very close to another two, so the card definitely has potential.

Have you had to adjust your activities as your body has changed? How have you adapted? What tools and tricks do you use? What are the challenges?

Self Care Bingo

2011-02-18T17:25:00.001-06:00

The huge snow piles around me are beginning to melt. Surviving the cold is becoming less of an issue. I'm starting to believe there may be life after winter.

I'm remembering where I was – in many aspects of my life – in November and wanting to return to that optimistic energy.

Kerri Morrone Sparling, who writes about living with diabetes in her blog Six Until Nine, created an idea I found inspiring: "diabetes goal bingo."I don't understand enough about diabetes to know what her numbers mean, but I liked the idea of being playful and specific with health-related goals.

For my life, I needed to focus not on producing a result, but I'm taking an action. I did some reading about self-care basicsand found some lists. They range from Michael Courtney's four:

diet
sleep
exercise
breathing

to James S, Gordon's ten:

relax
move
be aware
accept
have patience
timeout
fear not
ask for help
trust your inner guide
celebrate everything

I thought about it in my more-Monkish-than-most way (if there are three columns, then I can split it into physical-mental-spiritual and have three goals in each of those areas…) and came up with this generic bingo card:

I personalized that table so it looked like this and became a "bingo card for the week: "

I will let you know next week what I decided to do about prizes. Meanwhile, if you would like to play along, here is the generic version in Microsoft Word format.

Attitudes and Experiments to Get to the New Normal

2011-02-11T16:10:00.000-06:00

A woman asked me "how long does it take to get to that new normal?" She was talking about the idea that, living with chronic illness, our bodies change and we adjust until we get to a new normal.

I don't think my answer was very helpful. I talked about the process and amount of time being different for everybody. That's true, but it doesn't get many of us through the rough spots.

We're talking about dealing with change. One of the Carnegie coaches on the Dale Carnegie blog generalized: "In today’s workplace, there may be no more important skill than the ability to adapt successfully to change."

While all 21st century citizens are dealing with change, those of us coping with chronic illness are exploring new territory. It's no huge surprise that googling "new normal" took me to a "Survivorship Guide for Bone Marrow/Stem Cell Transplant" page.

Like others, our new normal is imposed by outward circumstance. Unlike others, our new normal is found within our own bodies, our own psyches, our own souls.

Standing in the way of my reaching a new normal, I find three things:

Grief. It's hard to let go of the me that was. I was comfortable, capable and more easy-going. The way of life being forced on me is not one I desired.
Ignorance. I'm not sure what is involved. It's not clear what my body can do and can no longer do. I can only guess and pay the price in pain or exhaustion when I guess wrong.
Impatience. As soon as I understand that things need to change I want to be done with it. I want to reach the point where things are comfortable again. I want it NOW.

While my disease is beyond my control (not, with medication, beyond influence, but still beyond control), I can control my actions and attitudes.

Attitudes helpful in the face of change

Change is a challenge. Getting to the new normal is not easy, but it is possible. If I have a competitive bone in my body, now is the time to engage it. Some people climb mountains, I get to the next new normal.
Find the gift. Again, this is not easy. Finding the gift may feel like grasping at straws, but it is a worthy exercise. Grasp those straws and list the ways that this change will be change for the better. You don't have to believe it. You are just opening the door a crack.
Try something new. I'm not a fan of change for its own sake, but having the attitude that I am going to "try something new" can help me embrace the new normal. It may not be forever. This may not be my final answer. For now, I'm going to try something new.

Here are some experiments to try:

Learn about the new you. Explore the contours of the change. Do exercises to find ou how your body has changed. By this I don't mean challenging your body, but moving it gently to find out what you can do now. Physical therapists are often helpful in this experiment.
Explore your hidden judgments. Write a list: "people who [whatever you're dealing with] are..." Keep your hand moving and write as many items as you can manage. Look at and challenge each judgment.
Practice loving you. I often listen to the Loving Kindness Meditation at the Mindfulness Awareness Research Center in UCLA. The process of extending loving kindness to my good friend, imagining her returning it and then practicing loving myself works for me. The article Waving goodbye to our old selves, and embracing our new existence at chronicbabe.com speaks to this issue.
Celebrate the new new you. Have a special meal or give yourself a gift that celebrates your new self. You are, after all, evolving a new being. Reward yourself for the effort.

Evolution takes time and it's hard to be patient with it. Luckily we have things we can do to keep us entertained while we're transforming.

Book Response: The Art of Happiness

2011-01-29T13:02:00.000-06:00

I recently finished reading The Art of Happiness, a Handbook for Living by His Holiness the Dalai Lama and Howard C Cutler, M.D. The book is one of a series that made the New York Times and other bestseller lists. In it, Howard Cutler relates a series of conversations he had with the Dalai Lama and his own musings, as a psychiatrist, about them.

While my own highlights and notes tended to be quotes from the Dalai Lama, Cutler's comments and stories give the book a more practical and human feel than books written by His Holiness alone. (For psychology wonks like me, it's fun to read parallels between Buddhist philosophy and psychological theories.)

The ideas that stayed with me are simple but powerful:

The purpose of our life is to seek happiness.
Happiness can be achieved through training the mind.
Happiness gives us long term satisfaction and should not be confused with pleasure which is short-term.
Developing compassion is important to our mental and physical health and our relationships with others.
Cultivating basic spiritual values – goodness, kindness, compassion, caring – is critical to our own happiness and creates a less troubled society.

American culture is excited by the idea of happiness, but we don't think of it as something we can learn or choose. Rather, it is something that comes and goes in our lives as outward circumstances change. Buddhist philosophy is that positive states of mind can act as direct antidotes to negative states of mind.

"One begins by identifying those factors which lead to happiness," says His Holiness, "and those factors which lead to suffering. Having done this, one then sets about gradually eliminating those factors which lead to suffering and cultivating those which lead to happiness."

"Easier said than done," snarls my monster mind. Then I read about the meditation exercises practiced by Tibetan Buddhists.I remember the comments of a friend who visited Dharamsala, India, where the Dalai Lama settled after fleeing Tibet in 1959. She resisted comments of others who characterized Tibetans as "a happy people," but found herself thinking the same thing: "these people are so happy."

Being diagnosed with a progressive incurable illness seemed like an invitation to unhappiness. I suppose that I have been, ever since, trying to find a way to say "will not attend." Western psychology has given me some tools (such as cognitive therapy, visualization and creative expression) with which to make a different choice. This book reminded me of – or introduced me to – another set of tools, varieties of Buddhist meditations, that can redirect the motion of my life toward happiness.

The Frugal Enthusiast

2011-01-14T15:53:00.000-06:00

A nine-month-old has inspired me to describe myself in a new way. My newest creative experiment is to think of myself as a frugal enthusiast.

Charles Vachon posted a time lapse video of his nine-month-old son, Charles-Edward, as he played on the floor. Four hours of play were condensed into about two minutes of "synaptic exuberance."

Baby Edward's curiosity and sensory involvement are glorious to watch. Robert Krulwich, writing about the video on NPR's Sciencey Blog concludes,

"babies go wild making connections and then, as we grow into our preferences, our personalities, life is like a scalpel. We slowly shed what we don't need or use or want. Having watched Edward for those time lapsed four hours, it's hard to imagine what he’s going to give up later in life but he's got to give up something. We all do."

My mother will turn 90 this year. She was describing how much more difficult it was this year to pack away the Christmas decorations. She just doesn't have the energy or stamina she used to have.

Though I am 40 years younger than she, I find myself in a similar situation. The natural losses of aging are compounded in my body by chronic illness.

We all have to give up something. The trick, of course, is to do it gracefully.

In the late '80s I watched a television show called "The Frugal Gourmet." Host Jeff Smith cooked good-tasting food prepared with an eye toward budget and prudent use of ingredients.

I love Baby Edward's engagement in the world. I remember the childhood feeling of wanting to do everything, to try everything. There is a piece of that I don't want to give up.

On the other hand, at my time of life, conscious choices are my allies. In a metaphorical Baby Edward's world, if I spend too much time kicking the oval basket, I may lose energy before I get to crawl under the chair in the corner. As we age, we get better at seeing our options. As a person dealing with chronic illness, I have to take a step back, consider the universe of choices and set priorities. If that chair is important, I better visit it first.

So I have arrived at the phrase "the frugal enthusiast." Frugal because I need to be economical, not wasteful, in my expenditure of energy. Enthusiast because I want to be a person active in interest. I would rather get excited about things for seconds than be bored for hours.

Inviting Change: The Power of Less (book response)

2010-12-31T14:41:00.000-06:00

[I have decided to post a few notes about a book before I mention it in my monthly newsletter. This is not a review of the literary value of the book, but rather a record of the response I had while reading it.]

The new year invited me to think and read about making positive changes. That's what New Year's resolutions are all about, right?

I was reminded what dangerous territory the idea of change is for me.

My adult life has been organized around coping with changes thrust upon me by living with a chronic illness. What with changes engendered by living at the turn-of-the-century and living through an uncertain economy, etc., most human beings are coping with enormous amounts of change. The new jargon for grace in response to change is "resilience." Building skills in this area is a survival mechanism for all of us.

But what about inviting change? I've been spending time recently with a book called The Power of Less, by Leo Babauta.

I was attracted to the book because Babauta is the author of the popular blog Zen Habits. I hoped he would not get too aggressive and heroic with his advice about how to make changes.

The book does, indeed, take a gentle and sane approach to change. Babauta encourages us to identify what is essential in our lives and eliminate the rest. It is about simplification.

I enjoyed and was inspired by the first 60 or so pages and then found myself getting into trouble. It took me a few days of processing (I'm not the fastest heifer in the stampede) before I realized my difficulty and made accommodations.

Babauta's Power of Less Principles-- and his explanation of them-- are fine:

Set limitations.
Choose the essential.
Simplify.
Focus.
Create habits.
Start small.

In the second part of the book, "In Practice," he gives examples of how to apply the principles in various areas of our lives. I found myself getting more and more frustrated with this section, until I identified my difficulty.

My problem, it turns out, is that I have little control over the practicalities of my life. I can't, for instance, get up half an hour earlier and create a new morning routine without inconveniencing several people. I have to have help to get out of bed, get dressed, have a cup of tea… I have to have help with pretty much everything on his morning routine list. I ran into similar trouble with many of Babauta's suggestions.

I returned, as I often do, to the safety of the serenity prayer: God grant me the serenity to accept the things I cannot change, the courage to change the things I can and the wisdom to know the difference.

Babauta's book encourages us to think about goals and projects. To his process, I need to add:

Identify tasks wherein I have control.
Identify tasks with which I would need to ask for help.
Decide with which tasks I am willing to ask for help.
Identify potential helpers.
Ask for help as decided.

My experience is that asking for help comes with a cost. If I have consciously decided to ask for help and accept the cost, then I will find it easier to make the changes I want to make.

Babauta's emphasis on focused, small, present-oriented changes makes it a good fit for someone like me who is working within limitations. As with most life processes, however, I have to take a little extra time to tailor his suggestions to my specific needs.

Working with a Broken System

2010-12-17T16:15:00.000-06:00

What does living with disability teach me about working with a broken system?

This week I had the opportunity to bang into two broken systems.

First, the public health nurse who came to do my annual PCA evaluation (wherein she evaluates whether I still need the services of a personal care attendant) asked if my husband and I had discussed getting divorced so that, when I have to quit work, I will be able to continue to have a PCA. Second, I rode Metro Mobility, our local paratransit system and waited for my ride for an hour beyond the promised pickup time.

As I was bumping along in the bus, I realized I'm going to have to get better at working with broken systems. The good news is I'm not alone.

I googled "broken system" and discovered that I am surrounded by them. Our financial, immigration, education and healthcare systems have been described as broken…and that's just the first page of results!

So, hmm, what do I know about broken systems? Oh, right! I live in this body, which some people would no doubt describe is a broken system. Can't get much closer than that.

Learn as much as you can handle

Knowledge is power. The more I learn about how this system works, the more resourceful I will be in response.

On the other hand, there is more to know than I can take. I have to look at the big picture and make some guesses about what knowledge will be the most helpful. I have to learn a piece at a time or I get too overwhelmed.

Identify the experts

There are people who already know a lot about the system. If I can figure out who they are and talk to them, they can help me learn more quickly and efficiently.

I also need to remember that some of the experts do not have titles or letters behind their names. They are, as jargon has it, "consumers"-- those folks who have wrestled with the system from the inside out.

Notice what's working

Broken systems are so obviously broken that it's easy to miss what's working. I need to pay attention to what goes smoothly and easily. When I find those things, I need to:

celebrate!
thank the folks who are doing a good job
think of ways I can strengthen these pockets of righteousness. (See "advocate" below.)

About what's not working...

What's glaringly obvious about a broken system, of course, are all the things that are wrong with it. When I bump into those things, I can ask two questions:

Can I make it better?
If yes, then hahloo hahlay, I should just have at it! If no, see question #2.

Could I fix it if I had help?
If yes, then I can rally the troops and take action. If no, see question #3.

Do I know who can make it better?
If yes, then I can contact them, let them know what I see is wrong and tell them any ideas I have about how to fix it. This is called advocacy. Unfortunately, many of the consumers of broken systems are unable to do it because of lack of knowledge and resources (including personal energy). If I can do it, I should! (Real Genius fans say it with me: "it's a moral imperative.")

If no, then I can do research to try to find out who can influence this system.

What if it just stinks?

Suppose I can't--even with help--do anything, my advocacy efforts have come to naught and the system is still broken?

Sometimes, the best offense is a good defense.

I need to protect myself, body, mind and spirit.

Having learned about the system and identified the experts and influencers, I can figure out what rules (nonsensical though they may be) are in place that might help me get what I need.

I can bear in mind that broken systems often don't make sense; it's not necessarily that something's wrong with me.

I can cultivate a state of mind and spirit that allow me to exist amidst the chaos. I need to put some thought, creativity and effort into creating my "bureaucratic happy place" whence, faced with the inequities and complexities of the broken system, I can retreat.

As it turns out, I have a lot of ideas about working with a broken system. Isn't it great (sarcasm) that I will have so many opportunities to practice them!

Trusting in Here and Now

2010-12-03T15:56:00.002-06:00

Art Every Day Month, Days 27-30

It is December. I am embarrassed to admit I have been wondering what to do about December for days. Art Every Day Month is over. Will I stop making art? Will I stop the other behaviors (meditating, exercising) that I connected with making art?

I have to laugh at myself. I decided to make art every day. There was no one making me do it and there is no one grading me on my participation. My thought, "where do I go from here?" is only a thought. It pulls me into a future that has not yet arrived. If I stay in the here and now, I will be all right.

Here is what I did the last four days of November.

Texture again
Experiment with an object
Meditation on Strong Feelings
Following the Hand 11-30-10

Today is December 3. I painted yesterday and the day before (in a new notebook I bought). I painted because I picked up the brush and painted.

With the new notebook, I created some new rules.

I don't have to create something new every day. I can add to a painting done on an earlier day.
I don't have to use only one piece of paper every day. (I bought three notebooks.)
I don't have to blog about what I create every week, nor do I have to scan and post the results.

I have thoughts about where to go (and not go) from here with my painting that have been generated by what I've done over the last 30 days. (Day 28 was an experiment that definitely gave me some ideas.)

Those are thoughts and ideas. I can welcome them with "curious attention" (as one of my favorite meditation guides would say).

When it comes to continuing to paint in the coming month, I just need to pick up the brush.

Not precious and precious

2010-11-27T10:38:00.002-06:00

Art Every Day Month, days 20-26

The Open Door
I'm Tired!
Texture
My Healing Story now (lower right)
Body Scan 1
Body Scan 2
Following the Hand 11-26-10

Not Precious

Twenty years ago, I was a fan of a photographer named DeWitt Jones who wrote a monthly column that combined photography advice and zen philosophy. (Googling him now, I am pleased to discover he is a hugely successful photographer and speaker.)

One of the things that impressed me about him was that he would take hundreds of photos, unconcerned about the cost in time and film, in order to get one beautiful image.

Making a painting every day has reminded me of that approach. If I work for several months on a painting,it's easy for it to become precious to me… All that time spent and all those decisions made.

The rhythm of my life does not allow me to spend huge amounts of time on a painting each day. They have to be made quickly in between other dailyness.

They become less precious. There is another one coming tomorrow.

Precious

On the other hand, when I look at them closely, when I spent time with them, I discover parts that delight me. On day 22, I remembered how much I like texture in paintings. I have been enjoying the simplicity of some of my output this month (example: day 19), but I was missing the complexity of multiple layers and marks. Day 22 is my favorite of the week. When I look at the state of the paper, however, smudged and marked with paint from other days, I wish I had treated my little notebook with more care and respect. That piece would look so lovely against pristine paper.

I took a workshop with writer Natalie Goldberg. (Also about 20 years ago… I confess to a secret enjoyment of how much older these people look now. What? The mirror, you say? Pshaw!) She encouraged people to write-write-write, to trust that there was more where that came from. Then, when people came to read their work aloud, she asked them to read slowly. encouraging them to caress each word as it came from their lips.

Not precious. Precious.

Painting, writing, living, loving with wild abandon as if there can always be more, as if the Source has no end.Yet slowing down to appreciate each shining drop and understand its holiness.

More Surrender Equals More Beauty

2010-11-19T13:05:00.000-06:00

It is still Art Every Day Month.

Vibrant Energies
Following the Hand 11-14-10
Hot Chocolate
Loving Kindness
Behind My Eyelids
Mandala 11-18-10
Moving On...

During the past week I have noticed that, when I try to control the marks I'm making, when I try to be very deliberate, I like the product less. I am clenched around what's happening and the tightness shows. When I paint without an agenda, just following the hand or starting with a vague notion, I find the results more beautiful.

I thought about calling this post "Less Control Equals More Beauty." Then I thought about the results of lack of control in my life: working too much, saying mean things, etc. That lack of control does not produce good results. I chose the word surrender instead.

I am not trying to control the marks, rather they are being pulled out of me by the idea or the emotion that I'm trying to express. Surrendering to that process makes the work more fun and the results are more beautiful.

Art imitates life.

My Hand in Curious Motion; A Kiss and a Promise

2010-11-12T14:19:00.001-06:00

Art Every Day Month, days 6-11

Still in love with sumac leaves.
Playing with Prismacolor sticks.
Entranced by fall foliage.
Sunset.
Purple berries and green leaves. I love
purple and green.
Ispired by hearing Lynda Barry on
NPR.
What are the colors in this paint set?

My Hand in Curious Motion

Yesterday, my Delight of the Day was listening to Lynda Barry on NPR'sTalk of the Nation. I was driving home from work and there she was. I've never heard of her before, but waited in the car until the interview was over.

Her new book is about doodling your way out of writer's block. She is sure that moving our hands to write or draw causes our brains to think in different ways than they do otherwise. It was one of the callers who inspired me. A political cartoonist, he talked about getting his ideas from his "hand moving in curious motion."

When it was time to do art, I let my hand lead, doodling with a paintbrush. My hand definitely moved in curious ways, making marks I would not have expected. That day's image continues to call to me. I want to work with it more but decided to move on today because it feels like I need to live with it for a longer before I know what I want to do.

A Kiss and a Promise

Moving on made me remember a phrase my mother used when she felt that the house needed to be cleaned but we didn't have time. "Just give it a kiss and a promise," she would say, meaning that we would come back later to do a more thorough job.

It's a wonderful expression, especially for those of us who would like to be perfect. It's not that I'm doing a bad job. It's not that I'm abandoning my "need" for quality. Instead, I'm doing the best I can for now and moving forward with the intention of coming back.

The kiss is respect for the present moment; the promise is resolve to live in hope.

Love the One You Are (Art Every Day Month, Days 1-5)

2010-11-05T12:59:00.000-05:00

I have been pondering why it is so hard for me to do the things I want to do and the things I know are good for me to do. I want to do them so why don't I? It seems like it should be effortless. Yet, I will do any number of things, frittering away my time and my life, rather than do those things I say I want to do (art, writing, meditation and exercise, to name a few).

On October 30, I screwed my courage to the sticking point and signed up for Art Every Day Month 2010. I have been thinking about it (and the monsters had been arguing against it) for weeks. One of my heroes is Leah Piken Kolidas, an artist who writes the Creative Every Day blog and who invented Art Every Day Month eight years ago. Her intention was to create some art every day for one month and post it on her blog. She invited others to join her. This year more than 100 people are participating. (I used her widget to sign up but I am not listed… More about that later.)

I used this as an excuse to get some new toys. I bought a watercolor paper notebook and a new tray of 48 watercolors.

Results:

Here is what I produced during the first five days of AEDM:

There is the painting inspired by the abscission cells of the last post.
Delight of the Day: bare twigs against the blue sky.
Still delighting in the fall.
This one was about colors and paint.
I looked at the paint tray and used the colors I hadn't yet used.

Rules

Leah provides some very generous rules for AEDM, but I had to add some of my own.

Keep things simple; make it easy.The reason I chose a watercolor tray with because it's easy to start and stop using it. I don't have to spend time getting things ready or cleaning them up. That's also why I put the materials right where I will see them when I come in the door.
Allow beginner's mind. "Do you know what you're going to do?" asked one of my friends upon hearing my plans to participate in AEDM. No. I am purposely facing the blank page with no plan. As soon as I get home, I take the dog for a walk and then I come in and paint. Sometimes, I am inspired by what's outside. Other times, I have started with
Attach a target behavior to a habit. I take the dog out every day, so I made a rule that I would meditate as soon as I got inside and make art right after that. So far, that is working, but here comes the weekend when my schedule goes wacky and I will need a plan...
Don't compare. This is an old 12-step adage and one I need to hold close.I subscribe to Leah's e-mail feed and, after looking at her beautiful productions, the monsters started shouting about what a crappy artist I am. I had to take a deep breath and continue on.
Remember why. When I revisited Leah's website, I discovered that my name was not on a list of those participating. Foo! I wanted recognition. I wanted to be on that list with other people who make good art. But why? Am I doing this to impress? No. I make art to practice the creative process and learn from it and that's what I'm doing here. Remembering that, results and recognition become less important.

Dealing with the Monster Voices

I know I will spend significant time this month with the not-good-enough/why-bother monster voices as my companions. In case you haven't noticed, anyone can make art better than mine. There really is no earthly reason for me to continue this charade… Etc.

About that time, I started hearing (in my head) Crosby Stills and Nash singing "Love the One You're With."

Today, when I was scanning in my results and the monster voices were very loud, I successfully shut them up by looking at parts of the paintings.

For instance, the first day's painting (which I really don't like):

Became this:

And this:

Now those I like!

If I can't produce the art I love, I need to love the art I produce.

Letting Go: Another Lesson from the Rooted Ones? Maybe not...

2010-10-19T16:00:00.000-05:00

This autumn,I have been fascinated by falling leaves because I know that my life is at a point where I need to shed some things I have been holding close. Chronic illness will do that to a person.I have spent my life experimenting with who I want to become. Now I am in a season of letting go of some of that.

I thought that, once again, I could learn from the trees, but I've been struggling.

Leaves (and fruits and wilted blossoms) don't actually fall off trees; they are pushed.

Hormones, triggered by internal or external changes in the environment, cause the plant to create what are called "abscission cells." A layer of waxy material forms nearest to the stem to protect it. On the leaf side, a bumpy line of cells forms to push the leaf, bit by bit, away from the rest of the plant.

University of Wisconsin Plant Image Teaching Collection

{Pretty, hunh? It makes me want to paint. If I do, I'll post it.}

Flashback: I am 16 years old, sitting on a plane next to my mother, who is reading a book by Lafcadio Hearn. We are returning to the States after 10 months living in Jamaica. It has been an awful/wonderful/transformative year for me. I read this:

"When you pick a branch, the tree springs back into place. The same is not true of the heart's affections."

(I have been unable to Google the quote… Is the memory fiction?)

Part of me wants to emulate trees and falling leaves: How do I protect my core while I gradually push away what needs to drop?

Part of me insists on my humanity: change may hurt. To be fully human, I want to feel the hurt and loss and grief and incorporate it into my forward movement.

Let me get less esoteric. For many years, I have been driving half an hour to attend a church. Over the last year, my arms have been getting weaker and driving has been getting more dangerous. Getting rides is possible, but inconvenient and time-and-energy-consuming. During the last month, I've been making connections at a church 5 minutes drive from where I live. (On a nice summer day, I might even get there in my wheelchair.) It makes sense to change churches.

When I imagine staying at the "old" church, I feel tired and heavy. When I imagine switching to the "new" church, I feel relieved and free, but my heart hurts.

When we moved from California to Minnesota, my then seven-year-old daughter, Alexis, said, "we will never have all of the people we love in the same place at the same time."

She was right, of course. Moving on is a condition of creatures, not of trees. We leave things behind. If we are conscious, it hurts.

Alexis was right: we never have all of the people we love in the same place at the same time. But we learn, as we age, to carry the love with us and within us.

Lessons from a Sumac Leaf

2010-10-02T15:48:00.000-05:00

"I don't like change," said the man in the meeting. "Nobody does." Around the room, people nodded.

I beg to differ. I do like change. Maybe this is a defense against living in an unpredictable body. Maybe it's a generational thing. Who knows? Luckily, it turns out, in these postmodern times, to be a strength.

Delight of the Day

Lately, I have given myself an assignment: to identify my "delight of the day." That is, some small thing that makes me smile. Often, it is something I notice while I'm taking the dog for a walk. One morning I saw dew clinging to spiderwebs. Another day, it was the contrast of black-purple wild grapes against yellow leaves. Today, it was the green and red veins in a sumac leaf.

After a month or so of choosing delights, I decided to combine it with a creative experiment: to give a creative response. I have been singing back to frogs and waving my arms at birds. Today my response to the sumac leaf was this:

Changing Colors

In addition to playing with the patterns on the leaf, I reminded myself how leaves change color in the fall. Colder weather and shorter days lead the tree to shut down production of chlorophyll. For some trees, this reveals the color already in the leaf. The red and purple leaves (like those of the sumac) are created through a chemical reaction turning the stored chlorophyll into anthocyanin. The shade is affected by the pH level of the soil.

So we have this being subject to changes beyond its control. In response, it stops what it has been doing, takes the resources available and creates something new. The result is a blend of old and new, influenced by the environment in which the being grows.

Lessons for Humans

Although I like the possibilities change invites, I don't always enter into change gracefully. The sumac can teach me:

Differences in my environment are invitations to change.
Recognizing those differences puts me in a place of choice.
Now might be a good time to stop what I have been doing and identify my resources.
Can I use the same resources and do something different with them?
The new may be very different from the old. (The greens and reds of the sumac leaf are opposites on the color wheel.) Still, they can coexist.
The processes and products I create may be different from the ones others' create. That's okay.
The processes and products I create may be different from one another and from those I've created in the past. That's okay too.

Human brains sometimes find change disconcerting and scary. When we remember that it--and we--are part of the Divine Pattern, we can take deep breaths, slow down and learn from the rooted ones.

Trust:: Empty can be complete.

2010-08-20T13:23:00.001-05:00

Deep breaths

Soft belly

assistive software is puzzled by poetry.
Where is the context?
What is that sentence?
Trying to make space,
trying to move slowly
causes my software to stumble.

New challenge:

surrender (at least sometimes) to the hidden gifts of disability:

slowness

darkness

limits

don't let the tools they give me seduce me into their world of

speed

brilliance

ambition

Empty can be complete.

Trust: Needing Roots

2010-07-30T15:47:00.004-05:00

The other day, I did a creative experiment: Make marks showing what happens when you try to trust the divine.

My consciousness is in green. I start out steadily enough, then I get distracted by the sparkly popping things in the air and head towards them. I am trusting-trusting-trusting and then the air gets so thin and the sparkly things so thick that suddenly I realize I'm not trusting and I fall to earth. Icarus, anyone?

I looked again at the image. "Shallow roots, that's my problem," I thought.

I went on a riverboat ride and was entranced by the trees along the bank with their roots exposed. The water had taken the soil away from these glorious tangles but they were clearly still doing their jobs: the trees stood straight and tall, reaching toward the sun.

Wondering about roots, I read

The root system of a tree performs many vital functions. In winter, it is a store-house for essential food reserves needed by the tree to produce spring foliage. Roots absorb and transport water and minerals from the soil to the rest of the tree. Roots also anchor the portion of the tree above ground. It is important to keep the portion above ground healthy to ensure an adequate food supply for the roots to continue their important functions.
http://www.ext.colostate.edu/pubs/garden/02926.html

Something to absorb and transport nutrients sounds like just what I need. But how do I keep the portion above ground healthy?

More reading:

Room to grow
Steady temperature
Adequate water
Adequate light
Proper nutrients
http://www.wikihow.com/Grow-Healthy-Plant

Aha! After last month's post on finding purpose, I have been paying attention to who I am. It seems I ought not be fighting that, not my time of life. So how does a bookish introvert serve? I hope by learning and thinking and putting it together and sharing it with others. It's all I can think to do, though it isn't full of sparkly poppings.

Here is what arrived;

(The first time I thought this through, the "physical" column was missing. I have enjoyed some thought-spinning over whether this is defensive—due to physical disability—or whether being oblivious to physical needs contributed to illness, or both.)

This list can guide my exploration of the idea of trust.

Until next time, I will be experimenting with the idea of "room to grow."

See why I like making art? It's like a doorway to a secret garden.

Trust: On Finding Purpose

2010-06-11T12:04:00.002-05:00

The people I most admire live lives of creative and joyful service. From my outside perspective, their backgrounds seem to prepare them, their choices seem to be obvious (though not easy), their strength seems to be unwavering. How do they do it?

In the last two weeks, I felt myself moving beyond the theme of hope. There were several experiences and ideas blending in my mind. They distilled into a dream.

In the dream, I am attending a rehearsal of a community orchestra. I'm excited about the work these people are doing and want to be a part of it. I am keenly feeling the loss of no longer being able to play the viola (due to disability). Maybe, I think, I can volunteer to do some graphic arts for them. That's something I can still do on the computer. Mulling this over, I wheel out into an alley to get my van and go home. The van has been stripped—really stripped. All of the body covering (fiberglass?) has been removed and only the frame remains. The seats and everything inside the van has been removed. The wheelchair ramp is standing open. I wheel inside and try to start the car, but the battery has been stolen so the car is dead. First, I think about calling my husband. Then, I realize I should call the police to report the crime. I wake up with my heart pounding and a feeling of panic.

My biggest fear is becoming useless. I worry about how long I will be able to continue driving safely (answer: not long). I worry about how long I will be able to keep my job. I worry about when I will need to move into a facility.

I believe this dream is about that fear. Drawing me into that orchestra is beauty and community, but I can't make the same contribution I would have made earlier in life. I try to compensate (and feel proud of myself for doing so), but my ambitions are derailed by a reminder of my complete dependence on others...even on strangers. The dream is a nightmare because of my emotional response to it.

Therein lies the lesson. The initial situation in the dream is entirely realistic; it could happen. The stripped van is a dreamlike extreme, but it is true that, like Blanche Dubois, I must rely on the kindness of strangers. What I need to do is get beyond my panicked response to the facts. In the end, this dream is about trust. Only trust can assuage my fears.

My new theme is trust.

This week I was fortunate enough to hear Alexie Torres-Fleming speak. (You can get a taste of her by watching her on YouTube.) She talked, among other things, about how the American definition of success (which she initially accepted and accomplished) turned out not fit for her. I was impressed by her ability to discern and follow her inner voice (God). When I accused her of having an unusually articulate and specific God, she responded that we all do if we get past our fears and learn to listen. She also pointed out that, while her mission may not be my mission, we both have one. I was reminded of Marianne Williamson:

"Our deepest fear is not that we are inadequate. Our deepest fear is that we are powerful beyond measure. It is our light, not our darkness that most frightens us. We ask ourselves, Who am I to be brilliant, gorgeous, talented, fabulous? Actually, who are you not to be? You are a child of God. Your playing small does not serve the world. There's nothing enlightened about shrinking so that other people won't feel insecure around you. We are all meant to shine, as children do. We were born to make manifest the glory of God that is within us. It's not just in some of us; it's in everyone. And as we let our own light shine, we unconsciously give other people permission to do the same. As we're liberated from our own fear, our presence automatically liberates others." (A Return to Love: Reflections on the Principles of "A Course in Miracles", Harper Collins, 1992. From Chapter 7, Section 3])

I originally thought this post would be called "body of work." My artwork has taken a turn lately: I am illustrating other people's words by repurposing and recombining earlier paintings with new electronic illustrations. Having created a dozen or so of these new pieces, I realize that I am creating a new body of work. When I first started to take myself seriously as an artist (something I no longer do), I remember struggling to produce a "body of work."

"Galleries and art buyers want an artist to have a body of work to show that they can consistently produce art that is distinctive and of a predictable, suitable quality." (Art glossary, about.com)

I despaired of making work that was distinctive and predictable. A mentor helped me by listing for me all the commonalities she saw in different pieces I had created. She was able to see how my work was distinctive and predictable when I was not.

I think my heroes' lives may also be less distinctive and predictable when viewed from the interior.

If I trust what I heard from Alexie Torres-Fleming, I realize I am being called to create a new body of work in my life as well as in my art. As my subconscious has warned me, my old way of being will no longer be possible. My ideas for what to do instead may not be the right ones. I need to begin by letting go of my fierce—and false—independence. I need to begin with trust.

Choosing Hope

2010-05-28T16:21:00.002-05:00

I have been exploring other people's notions of hope. Two quotes have been dancing in my mind the last few days. Christopher Reeve said, " Once you choose hope, anything's possible." Marion Zimmer Bradley wrote, " The road that is built in hope is more pleasant to the traveler than the road built in despair, even though they both lead to the same destination."

After actor Christopher Reeve became quadriplegic in 1995, he used his fame to advocate for research that would lead to a cure for paralysis. I am ashamed to admit I was disappointed with his choice. I thought he might champion physical and social accessibility for people with disabilities. (At that point in my life, I had begun to use a cane to walk short distances and a scooter to travel longer ones.) I thought his determination to walk again was an unrealistic waste of time. Now I see it differently. He was practicing choosing Hope.

Until recently I thought I didn't “do hope." My interaction with Julie Neraas, author of Apprenticed to Hope has transformed my thinking. She has helped me understand hope as (among other things) a belief that, in the end, things will be all right. I recognize that moments of that belief have carried me forward through my messy life. Reaching for those moments is the underlying purpose of my insistence on practicing life as a creative process. Surprise: I do hope.

I don't, however, do it well. Zimmer Bradley is pointing out that our future is unknowable and beyond our control. Our road will lead where our road leads. As we travel we can choose our attitude: we can choose hope or despair. I spend way too much time in the unpleasantness of despair.

Can I get better at choosing Hope?

Any parent with school-aged children knows that spring is concert season. In the last week, I have been to two middle school music concerts. They have reminded me how we go about learning and improving skills.

We observe as other people demonstrate. Reading about hope, hearing other people talk about their hope and watching as others live in hope gives me that opportunity.

We break the whole into small, more manageable, parts. What are the pieces of choosing Hope?

Choose to choose. When I was a young psychology student, I tripped over the idea that I could choose my emotions. My feelings seem to jump out at me randomly from dark corners. (Yes, part of the problem was that I was shoving my feelings into dark corners.) I couldn't imagine having any control over my emotions. Then I discovered Rational Emotive Therapy and the idea that what I was thinking gave rise to what I felt. Even though my first thought was an unconsidered reaction, I realized I could choose a different thought to replace it. Despite my instinct toward despair, I can practice thinking toward hope.

Look for the good. Speaking of middle school music programs, one of my junior high choir directors told us "the pony joke," with the punchline "with all this manure, there must be a pony in here somewhere." (If you haven't heard the joke, you can find it here.) I've returned to the story many times since. Finding the good in every situation—while admitting what could be the horrible realities of it—can help me choose hope.

Choose as an individual. I was a viola player between the ages of eight and 30. I was lucky enough to want to play and, though I'm sure my parents reminded me to practice, I don't remember putting up much resistance. I was playing for the sake of playing, because I enjoyed it and not to get anywhere in particular. Similarly, if I choose hope because I want to practice choosing hope, I will be more likely to do it. Attachment to results will not serve me well.

Choose in community. I have to make the choice myself, but I am not alone. Julie Neraas writes and speaks of hope as a communal effort. When I can't find hope, there may be others who can hold it for me. In turn, I may be able to offer hope to others when they lose it.

Having broken the whole into parts, we choose one part and do it slowly so our bodies (or, in this case, our minds) can get the hang of it. If something is difficult, we do it more often. Eventually, we become more fluid.

Practice practice practice. One of my least favorite sayings is "practice makes perfect." Even if things become easy, we keep practicing. Explore the nuances. Add variations. Practice to practice, without attachment to a perfect product.

One more quote: Chinese author Lin Yutang wrote, "Hope is like a road in the country; there was never a road, but when many people walk on it, the road comes into existence."

It's time I made my own hope road.

Attracting hope (in which I go too far with the dove metaphor)

2010-05-14T14:43:00.002-05:00

"I hope you remain in good spirits," wrote my friend in the last line of his e-mail. "Ha!" my monster-mind replied. "In order to remain in good spirits I have to be in good spirits in the first place. How long has it been since I've felt in good spirits?" Okay, monster, let's dance.

The free dictionary defines in good spirits as "without losing equilibrium." We use the expression when we are talking about getting over a health challenge or relationship difficulty.

But what are good spirits? I dodged the alcohol and ghost-related Google results, spent some time remembering my experience with positional vertigo during bedrest and finally connected "good spirits" with the best spirit: the Holy Spirit. Pentecost Sunday this year is May 23, 2010. Pentecost is one of my favorite Christian traditions. We tell the story of Jesus' apostles gathered together following the execution of their leader. "Suddenly there was a noise from heaven like the sound of a mighty wind. It filled the house where they were meeting. Then they saw what looked like fiery tongues moving in all directions, and a tongue came and settled on each person there. The Holy Spirit took control of everyone, and they began speaking whatever languages the Spirit let them speak." (Acts 2:1-4)

The Pentecost story is an answer to the question: how do you keep going when it looks like everything is lost?

The answer: the Holy Spirit, something mysterious enough that it sends us traipsing back to the Holy One to say, "hunh?" Now we are in conversation with—in relationship with—God, which is just where God wants us.

I grew up in church with stained glass windows that included a depiction of the Spirit descending like a dove. I am wrestling with the concept of hope this summer, at the invitation of my present church, which is studying the book Apprenticed to Hope. My initial (monsterish) response is that "I don't do hope." The author and my church companions are slowly opening me to the possibility. The dove is also used as a metaphor for hope, thanks to the story of Noah's released dove returning with an olive branch in its mouth.

I decided to see what I could learn by playing with the metaphor of the dove.

How do I await the Holy Spirit? How do I invite hope?

How do I attract doves?

It turns out, according to the folks at the University of Georgia, to be fairly simple. Doves want food and water. They nest in piles of twigs (sometimes in low bushes, sometimes on the ground), but they're willing to travel distances to get what they want. Even if my heart is not the perfect habitat for the Spirit, it's willing to find me and able to put up with a less than perfect host..

Doves like to drink water, that common substance that covers 70% of the world's surface. Yay! I'm common. I also am embarrassed to admit that I didn't quite know what water does for a biological creature. It turns out that our bodies need water to regulate temperature, provide the means for nutrients to travel to our cells, remove waste, and protect our joints and organs.

I can translate those functions into a list of spiritual disciplines. A practice of meditation helps me regulate the extremes. Participating in community and worship allows nutrients to travel to where they are needed. Confession removes spiritual sludge. Practicing the presence of God (prayer) helps protect my functioning parts.

This is where the monster raises its ugly head to say, "Practices! You're no good at practicing. You do great for three days and then you go back to your old nasty habits. That little bird is gonna die of dehydration in no time." Sigh.

Doves like to eat millet, a general term for small-seeded grasses grown in difficult production environments. Yay again! My soul is absolutely a "difficult production environment." Rather than spending hours cooking sumptuous dinners for these little birds, I can find some tiny seeds to scatter that might attract them.

If these practices seem like hard to crack, huge sunflower seeds, what would be millet?

Just for today I can:

Pray the Lord's prayer (worship, supplication, confession and practicing the presence in one convenient package)

Have a quiet time of meditation—even if it's only two minutes.

Call a friend.

Later this week, I can go to church.

What would happen if I lived each day as an invitation to hope and the Holy Spirit?

Repurposing Art and Life

2010-05-01T10:45:00.006-05:00

I am in the midst of an art experiment and loving it. I was asked to find artists to show their work in our church’s small gallery between May and August. Our theme this summer (not chosen by me) is hope. I was unable to find anyone to use the gallery in May. A couple weeks ago, I decided to do it myself.

For my series on hope, I developed the following experiment:

Google a word or concept you love (or resist?),
followed by the word "quotes."

Choose your favorite quotes and
respond with art.

(My results)

In addition to the time crunch, I'm getting used to a new level of disability. I am able to use my hands much less skillfully these days. Painting is a huge energy commitment because of the physical work involved to get materials out and put them away. In the last year or so, I scanned my art every time I painted. Sometimes I would paint something simple just for scanning and using later. Now I have a library of scans.

This feels like cheating. I'm not starting from a blank page, but it is my art. I'm not cheating, I'm collaborating with myself. I'm repurposing.

Repurposing. There is a word that was not in my father's (extensive) vocabulary. Answers.com defines it as “To use or convert for use in another format or product: repurposed the book as a compact disk.” Most references to it seemed to involve home decorating or ingenious use of everyday things.

In my last post, I wrote about my need to reinvent myself. Repurposing my art has been so much fun, I wondered if I could draw lessons from it to repurpose my life.

Necessity is the mother...

I wouldn't be making these pieces of art unless I needed to do so. Having a purpose and, frankly, being pressed for time motivated me to action. When it comes to reinventing myself, I can leave things as they are while I struggle or I can make changes that will make my life easier and happier. Gently reminding myself of the pain of inaction and the rewards of change may help motivate me.

Be inspired by others.

I subscribe to Hugh MacLeod's Gaping Void cartoon series. His interplays of words and lines delight me. It was his work that inspired me to combine words, paint and electronic illustration for the series. Paying attention to how others create and re-create themselves may exhilarate my own efforts.

Keep the best parts.

The quote reminds me of a scan I have available. I open the file, choose the part of the piece that is calling to me and copy it into a new file. Textures and hues in the painting (intentional or accidental) that attract me. Parts I don't like so much, I leave behind. What chunks of my life grab me? What slices do I want to discontinue?

Add something new.

Existing material may form the backdrop of the new work, but it's only a start. To say something new, I add something new. I can add focus by illustrating an image. Similarly, there may be something I can add to my life that will bring everything around it into a whole, will become a point of convergence.

Adapt as needed.

I often make changes to the backdrop or older illustrations as I repurpose them. I adjust lines (the woman walking on the road in the Lin Yutang quotation was once dancing to a Hebrew Psalm). I duplicate and darken layers. I make changes to add meaning. Parts of my life (some of them dear to me) must be left behind. What changes can I make that will deepen my experience?

Be prepared to undo.

Sometimes, when I'm drawing, my hand spasms and the line goes wild. When I am using the computer, I can use command (or control) Z to undo my last move. Thank goodness! I am getting used to using many “undo” commands as I work. How much easier things would be if I lived my life the same way, if I forgave myself mistakes, backed up a step and moved ahead.

Share it.

The “Hope Quotes” series will hang in the North Como Presbyterian Church Gallery of Gifts in May. Pieces will be added as the series expands. In writing and visual art, sharing my work with others is an important part of my process. Often, in "real life" I withdraw into my shy place. (This happens less often as I age.) I need to remember that living out loud is one way I can contribute to the human community.

It may not be as unexpected and clever as using rain gutters to corral cables, but reinventing—and repurposing—may keep my life doable and entertaining.

Eight Things to do instead of giving up

2010-04-16T14:02:00.004-05:00

In the last few weeks, I have come very close to giving up. Completely. Turn my face to the wall and wait to die. I have managed to change my mind, but it has taken work.

It was a tough winter. I spent the first week of December in the hospital and the following six weeks in a transitional care facility. (My family would later refer to it as "that place.") For most of that time, I couldn't do anything but lie there. No computer. No Internet access. I made a couple tortured drawings. Once home, I was visited by nurses three times a week. I was allowed out of the house for three things: doctor visits, church, and "the beauty parlor." While I was in that place, I thought of nothing but healing enough to get out of it. At home, I was surrounded by bits of my old life, but I didn't have energy or physical ability to take advantage of most of them…hence the impulse to give up.

Here's what saved me:

Focus on one small thing that fills your heart.

I went to a concert. (It was at a church... so I didn't even have to feel guilty about leaving the house www.globalharmony.org) There was one moment where the sound I was hearing was so wonderful that there was no room for anything else in my world—no room for any physical or emotional discomfort. There was only beauty. I thought: "Moments like this. Life is worth living for moments like this."

Return to the present moment.

I don't know how much of my former ability and energy will return. It is easy for me to get lost in worries about the future. That moment at the concert lifted me because I was nowhere else but the present moment. Pretending that the past and future exist is a game with very limited use. I've been writing for years about “making an internal gesture.” I finally know what I mean: paying attention to sensory information and leaving behind my mind chatter so that I am in the NOW.

Feel the blessing.

If someone else points out that there are people who have it much worse, I have to restrain my violent tendencies. Sometimes, though, I am reminded of these things naturally. For example, one of the pieces in the Global Harmony concert was about a Southeast Asian family fleeing violence. Hearing others' stories, I understand that—all things considered—I am blessed. When I feel that blessing, I want to go on.

Go mad.

In Douglas Adams book, Life, the Universe and Everything, hero Arthur Dent decides how to cope with being stranded on prehistoric Earth. He gets up one morning and announces "I will go mad!" After a particularly difficult day in my at-home recovery, I remembered Arthur’s coping mechanism and decided to try it. I had been thinking about things too realistically. I have an incurable disease and it's getting worse, hence: despair. Ruth Gordon said, "Never give up. And never, under any circumstances, face the facts.” In order for me not to give up I will have to ignore the facts. I will have to lose touch with reality. I must go mad.

Spend time with a friend…the right kind of friend.

I went to lunch with a friend and afterward felt much better. Not any friend would have left me feeling encouraged. My friend talked honestly of the difficulties in her life and how she copes with them. She is a 12-stepper and, as such, reminds me of the tools that come with that outlook on life. She is a deeply religious woman and the strength of her faith became a sort of splint for my own brokenness. Time with a good friend puts me back on the path to healing.
Learn something new.

I received an invitation to a free webinar. It was a subject in which I had only mild interest, but free is free and I had time. I listened to the webinar and took some follow-up video lessons. The subject matter had nothing to do with illness or medicine, so it was a nice change of pace. Absorbing information used my brain in a different way than when I am caught up in the emotions or tasks of dealing with my difficulties. In the book, Nation, Terry Pratchett's characters are recovering from a tsunami. One boy thinks about needing a "thin silver line" to draw him into the future. Learning something new is a thin silver line for me.

Reinvent yourself.

Having a major disruption in my usual schedule brings with it opportunity. I can reinvent myself. What is important to me? What gives me energy? What helps me move toward life? As I add activities into my life, I can choose which to reclaim and which to leave behind.

Look for reasons not to give up.

I started writing two weeks ago with five reasons not to give up. Because I was thinking about it, additional reasons have been jumping up and down, waving their arms and asking to be included. This has been fun and moments of fun, well, there's another reason not to give up.

What can an Artist with Disabilities add to the Global Warming Conversation?

2009-10-14T15:50:00.013-05:00

When I was in sixth grade, I made a papier-mâché globe, glued garbage to it and used it as a visual aid for a "save the Earth" oral report. A few years before that, my Brownie troop painted metal drums and put them around town to encourage people not to litter. I don't remember a time in my life without recycling. I am practically an old lady now, and you would think if people my age grew up tending to the environment we would be in better shape.

Today is Blog Action Day. All over the world, bloggers are writing about this year's issue: global warming. I decided to participate because I am always excited when people find a way to use technology to make a better world and, as I've mentioned above, environmental activism comes naturally to me. On the other hand, I am not an expert on global warming nor am I a shining example of an environmentally-sound lifestyle.

What do I have to add to a world-wide conversation about global warming? As usual, I bring to the table my two traveling companions: chronic illness and creative activity. They have suggested to me three points to throw to the blogosphere:

Do what you can with what you've got.

"Do you have a studio?" asked a woman who heard I was an artist.

"No," I replied, "I have a corner of my living room."

I used to have a studio. A couple times a week I would go to my studio and paint. It was lovely. I felt like a real artiste. Those were the days when I had more money, more physical energy and more time. I had more physical capability, too. It doesn't serve me well to spend much time mourning those losses. I need to feel the sadness, but then I need to breathe it out and let it go.

Right now, I have a little corner, with a flat surface and some paints. My hands don't do what they used to do, but I can hold a brush and I can move paint around and doing it makes my heart sing.

We humans have already gone a long way toward trashing the earth. The damage is probably not recoverable. There may be fancy future technologies that will help us clean up our act. We don't know about them yet, so for now we have to do what we can with what we've got.

Years ago, I was a fan of Berke Breathed's Opus the penguin. Opus wanted to lose weight and was willing to try anything...except to exercise and eat less. Similarly we humans seem ready to do anything to avoid global warming, except make the behavioral changes that need to be made.

There are practical everyday steps we can take that will make a difference. Visit Common Sense on Climate Change: Practical Solutions to Global Warming and make a commitment to go further in three areas.

Work for systemic change (meanwhile, play by your own rules)

We need to make big changes fast. By "big" I mean system wide.

In my experience, there are two ways to do this. First, we can advocate for changes in legislation and regulation. We can work within the system to change the system. Second, we can do things in a different way en masse and force the system to scramble to catch up with our changes.

I remember writing "DDT" in marker on my papier-mâché Arctic Circle. One of the sobering facts I knew, at 12, was that overuse of the pesticide was so widespread traces have been found in the Arctic ice. Bald eagles were dying. I was adding my voice to the public outcry that led to most uses of DDT being banned in the US in 1972. It worked then. It could work now.

Tell President Obama that we want him to lead the United States in taking bold and significant action to reduce greenhouse gasses.

The art world is pathetically stuck in old-fashioned ways of doing things. Young artists are experimenting with new ways to connect to their audiences. Musicians are sending their work directly to their listeners. Visual artists are making their work available on the web without worrying about copyrights. Writers are publishing their own books. The system is broken, so these mavericks are creating a new system. Traditional media are trying to find footing in a new world.

What astonishing, out-of-the-box ways are people making changes in response to global warming? what grassroots solutions are out there that we might be able to get to trickle up? I just had a good time googling "out-of-the-box solution global warming".

Find and support one unusual idea to minimize global warming.

Keep playing, even though you're losing.

The effects of multiple sclerosis on my body keep increasing. Lately, I've been mulling over words to describe it: relentless, implacable, inexorable. Rolling these words around in my mind somehow throws a layer of insulation between me and my frustration.

Recently, I have noticed a lot of news reports along the lines of Newsweek magazine's It’s Too Late to Stop Global Warming. (interestingly, or perhaps sadly, the first page of Google results I received for "too late global warming" came from 2005-2006.) There is a danger that people will give up.

I have exercised fairly consistently since I was diagnosed 28 years ago. For a while, I jogged. Then I did yoga. I learned tai chi. When I could no longer walk, I exercised in the pool. Now, I use a strap stand to hold me up while I use light arm weights. Physical therapists tell me that doing what I could do helped delay the progression of the disease. I have no idea if that is true (and--shh--neither do they).

Here is what is true for me: exercising brings me closer to my body. I am more aware of its ups and downs. I have more compassion for it. Exercising gives me hope. There are days I do better with the weights and can imagine I am getting stronger. That little swoop of joy is worth the gurgling sadness of the bad days.

Maybe it is too late to stop all the effects of global warming. In doing what we can, though, we may draw closer to our planet home. We may find new ways to work together as a species. We may join in swoops of joy over every environmental triumph.

Meshing with Mistakes

2009-10-07T13:23:00.021-05:00

(In which I teach myself about mistakes and achieve a long term goal of illustrating my blog.)

Sometimes, when I'm painting, I make a mistake. That could mean an involuntary movement of hand or brush makes a mark I don't expect. It could mean that I intentionally make marks that, on reflection, I don't like and wish I hadn't done. If I notice right away, I sit and stare for a moment. Other times, my eye keeps being drawn back to the problem area like a tongue checking to see if a tooth is still sore. The way I paint (acrylic paint used transparently), there is no way to cover it up. What to do?

Oddly, I have discovered that repeating the mistake in other areas of the painting integrates it into the piece, allows me to continue painting and sometimes moves the painting in a new direction. Are there life lessons hidden here?

The two kinds of mistakes I experience while painting help me understand what happens in "real life." Sometimes I make a mistake. I consciously take action. It seems like a good idea at the time, but it turns out not to be. I regret it. I wish it could be undone. Other times, outside influences affect me in unexpected ways and "mistakes are made."

I thought I might write about Overcoming Mistakes, but I didn't like the image of triumph it conjured. I wanted a word with more accommodation built into it. I have been playing with alliteration. In the thesaurus, I found the word "mesh."

While I love the slithery sound of the word, I was a bit worried by the idea of becoming enmeshed in mistakes. I switched to the dictionary to investigate the word.

It can be a noun, of course.

any knit, woven, or knotted fabric of open texture.

an interwoven or intertwined structure; network.

any arrangement of interlocking metal links or wires with evenly spaced, uniform small openings between, as used in jewelry or sieves.

one of the open spaces between the cords or ropes of a net.

It can also be a verb and (when used without an object) has these meanings:

to become enmeshed.

machinery: to become or be engaged, as the teeth of one gear with those of another.

to match, coordinate, or interlock.

So what can I learn by pairing the words mesh and mistake?

Weaves, knots and open spaces

In a weave, crisscrossing threads take their turns going over and under. There is order. There are spaces. The purpose of a weave is to make a fabric that covers or protects.

As Hannah Montana points out, everybody makes mistakes. Mistakes are part of my daily life. When they happen, they feel more like knots: tight, tangled, constricting. When I make a mistake (especially in more functional areas of my life), the mistake feels huge. One mistake reminds me of all its ancestors and my life looks like the one unbroken lineage of mistakes.

It's not, of course. The threads of mistakes cross my life, but they are not the whole cloth. I need to move into the open spaces in the cloth. I need to relax. Mistakes are part of the weave and perhaps, unyielding and wiry as they are, they make it (and me) stronger.

Be engaged, not enmeshed.

My initial discomfort with the idea of becoming enmeshed in mistakes is valid. if I hang onto my mistakes and become obsessed with them—even obsessed with fixing them— I will not escape them.

Better to become engaged with my mistakes, like the gears in a machine. The teeth in a gear are, like my mistakes, pointed and unyielding. Those are precisely the characteristics that allow it, when engaged, to push another tooth forward. A the gears push against each other in a rhythm of engagement and release, the machine moves.

Meshing with Mistakes

When I started writing this post, I imagined that for each meaning of the word "mesh", I would find a lesson for myself. As I wrote, paragraphs kept ending with the same lessons. I am left with these simple thoughts:

Mistakes, whether made voluntarily or thrust upon me, are part of my life. Expect them.

Notice the open spaces. Linger in them. Treasure them.

Play with the possibility that mistakes are (a) making me stronger and (b) moving me forward. (It may or may not be true, but pretending it is will help my attitude.)

I don't think purposefully repeating mistakes will let me integrate them more gracefully into my life. Perhaps, though, remembering the lessons of the mesh will allow me to move over and under obstacles more easily.

Creating Who I Am

2009-09-11T17:32:00.010-05:00

Recently, I read an article By Teresa Smith, Canwest News Service, showing a possible genetic link between mental illness and creativity.

I was most struck by a comment by Nigel Bart, a creative man with schizophrenia interviewed for the article. "When someone has a feeling that they need to create something, it's part of who they are, it's in their genes," he said.

That echoes my experience. When I am brave enough to admit to my creative efforts, I find two reactions in the people around me. One is puzzlement, sometimes—but not always—accompanied by admiration. Such people can't fathom what attracts me to creative activity. The other response I receive is conspiratorial understanding. Sometimes people glance around to see if anyone else is watching. Then they lean forward and whisper their confession. "I write," they admit. They paint. They knit. They do something with a passion and dedication not understood by those around them.

Perhaps, as this study suggests, there are some of us who need to create. When I am part of a creative project, I feel energized and optimistic. When I put away my art supplies or conclude that there are more important things to do than write, I get crabby at best or, at worst, dive into a dark night of the soul.

Last week I gave myself a creative experiment assignment: self-portrait (but not of my physical appearance) every day for five days.

It was not an easy week to choose to do art. It was the first week of school and my daughter's birthday was on Wednesday. I made the completion of the assignment as easy as possible. I made five rectangles on an 8.5 x 11" sheet of paper and got out my Sharpie marker set. Each evening, I made a drawing.

Lab Notes:

Day one shows the argument between my weariness and my determination.
Day two was meant to be the weight of tiredness, but when I looked at it I felt encouraged.
Day three was chaotic exhaustion. I went to bed early.
Day four: I clearly felt better.
Day five was completed after I went for a walk and admired some flowers along my path. This piece is also notable because I used my left (non-dominant) hand much of the time.

General remarks: markers are so bold, unforgiving and precise! I hated that. I longed for subtle colors and liquid transitions. On Thursday (day four), I had an eye appointment and spent the time while my pupils dilated imagining how to have a little painting area in the corner of our living room.

I'm always adjusting to the effects of my illness. My right hand and arm are weak and tremble. My left hand and arm are stronger, but shaky and I can't control them very well. Over the last year, I have been trying to consciously use my left hand more often (by way of training it). Pieces like the one I did on day five invite an emotional mixture of triumphant celebration and mourning.

Lessons from this experiment:

making a drawing every day was a concerted effort.

I felt good about them after doing them.

markers don't make a mess, but I struggle with their definitiveness.

Energy and optimism gave way (as they frequently and irritatingly do) to a migraine. [Something else I expect is part of my genetic predisposition; my grandmother and mother suffered them, too.]

Now that I'm recovered, I'm pondering what to do next. I wanted to tie everything up in a bow of lovely conclusion. Alas, it is not going to happen. This is art, not science, and even science experiments frequently end with more questions than answers.

I can conclude that regular creative activity is energizing to me, even though getting myself to do it is an effort and doing it can leave me overtired. (It sounds like exercise, doesn't it?)

My next project is to do some reading and research about what others have discovered about sustaining healthy habits...

Advocacy: healthcare reform

2009-08-19T17:31:00.002-05:00

A letter to my representatives:

Request: Healthcare reform that provides a real safety net (a government option)

“…the moral test of Government is how that Government treats those who are in the dawn of life, the children; those who are in the twilight of life, the elderly; and those who are in the shadows of life, the sick, the needy and the handicapped.”
—Hubert H. Humphrey

Greetings from the shadows.

After living with an incurable, debilitating disease (multiple sclerosis) for 28 years, I offer these opinions from my wheelchair:

Quality healthcare should be available to everyone, even people with health problems.
(Insurers should not be able to deny coverage for pre-existing conditions or discontinue coverage after a potentially-expensive diagnosis.)

Quality healthcare should be affordable

(Non-elective medical expenses should be no more than 20% of a family's monthly income. When they are, the government should help families pay.)

Quality healthcare includes home health: care attendants who provide help with activities of daily living for those unable to do them.

Healthcare case managers* should help doctors and patients coordinate care and find the most cost-effective solutions.

Reward people for good health habits, but don't punish them for bad luck.

(I have never smoked or been drunk, high, or overweight, but I am sick.)

[* I am aware that care coordination has not fared well in some studies, but having specialists and GPs work together with a long-term treatment plan (which mine don't) makes so much economic and medical sense to me!]

How it is for me now:

My husband lifts me out of bed and into my wheelchair (insurance helped pay for it) and then from my wheelchair to the toilet, where I pee and dress. He lifts me back into the chair. We each go to work. I drive our handicap-accessible van (we paid out-of-pocket). One of us takes our 11-year-old to her day camp. At about six o'clock, we all meet back at home and my husband helps me to the bathroom again. I sit in wet “disposable underwear” (adult diapers) in my wheelchair for 6 to 8 hours each day (depending on how my neurologically-challenged bladder is doing). We can't afford to hire anyone to help me to the bathroom during the day. (Home health agencies have two or four hour minimums.) Insurance will not help us because they do not pay for “custodial care.” A nurse involved with my care is concerned that I will develop pressure sores.

With our two incomes—and spending about $1,000 a month on our high-deductible insurance plan—we make ends meet.

What I fear:

The company that employs my husband is for sale. It is possible the buyer will take the intellectual property (patents) and close the company. No health insurance. The “disease modifying drug” (Avonex) I take costs over $2,200 per month. I would discontinue that. I am due for a refill to my baclofen ITB pump (spasticity medication) in January. That will probably cost $600. If I skip that, I will be in constant pain.

I don't spend much time on the fear road. It gets too big too fast. What happens if my husband has a medical emergency? We don't have any backup for him. What happens when I am no longer able to work? Apparently, even if one does get approved for disability benefits, it takes a couple years before any benefits are received. How will we get by?

What I hope:

I imagine a world where my case manager helps me sort through medical options the various specialists are recommending by weighing expense against long-term outcomes. I dream of getting some help so that my husband doesn't have to do everything (and can start saying yes to travel requests by his employer). I long for a life where everyone in the US can rely on a healthcare safety net that allows access to the care we need.

Being able to count on having healthcare, I could refocus my energies on raising my child and contributing to my community, rather than wondering if I am too much of a burden on my family.

Specifically:

A "government option" should be a part of any healthcare reform passed by Congress.

In order to insure all Americans, I would support a plan which increases taxes for middle and upper income families. (That includes mine… we make about $110,000 a year.)

Healthcare “rationing” doesn't worry me. I would welcome being told a surgery or medication would not be an option because it wasn't cost effective in the “big picture.” [I am on the wrong side of this argument, according to most disability advocates.]

End-of-life counseling makes sense to me, as long as final decisions are kept between individuals and their doctors and suicide is not made attractive through failures in care.

A healthcare system driven by “market forces” leaves the most vulnerable of us behind. Please do what you can to make quality health care available to all Americans.

Cyborg Serenity (Baclofen Pump, part 3)

2009-08-04T16:44:00.006-05:00

On June 30, 2009 I became a cyborg when a surgeon installed a baclofen pump into my abdomen.

[As I have explained elsewhere, (Baclofen Pump, parts 1 and 2) a baclofen pump is a device designed to deliver anti-spasticity medication directly into my spinal column.]

Wikipedia defines a cyborg as "an organism that has both artificial and natural systems." Thinking about becoming a cyborg made the impending operation seem more like an adventure than a nuisance, though memories of Star Trek's Borg continuum did give me pause.

It wasn't until after the operation that I looked at the Wikipedia entry and discovered that my thinking was not that creative. Wikipedia suggests "a human fitted with a heart pacemaker or an insulin pump might be considered a cyborg..." That being the case, we cyborgs are everywhere.

In the last month, the pump has been reprogrammed twice to adjust the dosage of medication. I confess I take a certain joy in it. The nurse practitioner holds her gizmo against my belly and presses some buttons. The alteration is instant and painless. How lovely it would be if other changes in my body(and my life) were as easy.

My post-pump body is significantly different than the body I had two months ago. It is not, alas, my pre-spasticity body. I had fantasies—and I knew that's what they were—that I might be able to transfer independently after the pump was installed. Instead, I am more dependent. Chances are, I will never be able to get up and dressed by myself again.

Emotionally adjusting to this loss has been surprisingly easy. I am reminded of the differences between "giving in" and "giving up." No amount of effort on my part will change the reality. I have to surrender to it. On the other hand, I am still here. As Richard Bach wrote in Illusions, "Here is a test to find whether your mission on earth is finished: If you're alive, it isn't." I am here, so I am invited to grow and explore, to listen and contribute.

I am dropped into a pool of serenity. This is my new body. This is my new life. My job, as always, is to find the gift in it.

A Reminder from a Brave Knight

2009-06-28T14:05:00.003-05:00

About ten days ago I met a brave knight.

He approached me and introduced himself: "I am Aaron," he said. "I am a brave knight. I live in a palace."

Aaron had dark hair and glasses. Looking at him, as I sat in my wheelchair, we were about eye level.

"I can tell you're brave," I told him, "Because you came to talk with me. A lot of people are afraid of the wheelchair."

Aaron nodded, a serious expression on his face. He asked me why I use the chair and whether I can drive and cook. He was impressed with the way I can make my chair go up and down. That was worth calling his mother over so she could see it too.

She was anxious. "Has he been appropriate?" she asked. I reassured her that I appreciated his curiosity and bravery.

Years ago, in a writing class, I was given the assignment to walk through a neighborhood remembering what I was like when I was a child. The world transformed. The possibility of magic was around every corner. Nothing was predictable...in the best way.

In two days, I am scheduled for surgery: installation of a baclofen pump. I have never had surgery before and I'm a bit scared. My MS has been worsening fairly steadily for 15 years. I am not expecting great things from the next phase of my life.

When I was growing up, I had a poster on my wall with a quote from Cervantes: "Too much sanity may be madness and the maddest of all, to see life as it is and not as it should be."

The brave knight Aaron has reminded me that I can choose to live another way. I can choose to believe in magic, in possibility, in life as it should be.

Claiming my True Identity

2009-06-12T16:48:00.013-05:00

Terry Pratchett has written one of my favorite characters: a failed wizard named Rincewind. Rincewind can't correctly spell wizard and, most of the time, can't do any magic. (A Great Spell has taken up residence in his mind, refusing any other spells entrance...you gotta read the books.) Still, he IS a wizard; he claims that as his identity, regardless of what other people might think.

In much the same way, I am an artist. I have only sold a few paintings. I self-published my book, Dancing with Monsters (not, I pridefully point out, because it was rejected but because I have the patience of a gnat and wanted to hold it in my hands rather than schlep it to publishing houses). Like Rincewind, reality seems to disagree with me. I find comfort, however, in the assertion of the great MythBuster-philosopher, Adam Savage: "I reject your reality and substitute my own."

I was worn out by weeks spent in the nasty bowels of medical recommendation and social service bafflement. There, I am a patient, a person with disability, a supplicant to the labyrinthine God of Benefits. I realized I had to think about—and do—something else. I needed to return to my center, practice my identity: I needed to make some art.

Even that idea comes with extra baggage of fear these days. For several years, my ability to use my hands has been decreasing. My left hand is strong, but it shakes and has never been very coordinated. My right hand and arm are weak. Earlier this year, I passed a milestone: the paintings I did for Lent were created using my left hand as much as my right. I felt as if there were a stop watch counting down the amount of time I would be able to make art.

I find inspiration in the work of Henri Matisse who, when he started using a wheelchair, shifted his art from painting to paper cut outs. Because painting was too physically rigorous, he found another way.

When I first started painting, it changed the way I looked at the world. Instead of just seeing a tree, I would notice the colors in the bark and the leaves and wonder what paints to use to mix those colors. I would think about what movements of the brush I would need to make to communicate the textures in front of me. The world became a magical puzzle and I love seeing the world that way.

Here in eastern Minnesota, we have been in near drought conditions. I looked at the sky. The sky that day moved from a light blue at the horizon to a deep blue right above me. It was like a clear, crisp, sustained note—a crystal chime. I sang back to it. I didn't have time, that day, to respond with an image. I did remember, though, and that working on the computer allows me to paint with light.

For several days, I looked at the sky and try to memorize what I saw. Finally, the weekend came and I had time to play with images and colors. I created "Five Skies."

It felt good to be making gratuitous art again.

Not too long ago, exhausted by the media harping on the bad economic news, I put some CDs in my car player. I was listening to Sweet Honey in the Rock. One of the things I love about that group is the rich texture they create with their voices. Thinking about that, I remembered that texture speaks to me. I want to touch things.

The clear blue sky, though, doesn't have a texture. It has depth. My digital drawings weren't capturing that depth.

I came back about a week later and made some refinements:

I don't know if the changes are even visible to the casual observer, but I felt better about the piece after making them.

When I updated my website to add the new sketch, I said I was working on "Five Series of Five." As soon as the words were out of my mouth, I started envisioning what the next five would be. (This time, I am definitely going to get to play with texture!)

Looking at the world through artist eyes, I feel interested and hopeful. Those days of sky gazing taught me that the seeing may be enough. If my hands and arms fail me completely and all I can do is watch and imagine, that will do.

I will be a maker as long as I can be. I will be an artist as long as I live.

Reset, Restart, Focus or Saved by Cheese Curls

2009-06-07T15:06:00.006-05:00

Lately, I have caught myself being jealous of my computer software. "Microsoft Word has encountered a problem and needs to close." I wish I could close every time I encountered a problem. Instead, I slog onward,trying to soldier past all of my problems. I have felt myself stretch thin and thinner. The problems seem to weigh more and more, pressing me down until I am a smear. Finally, something gave.

I have been trying for weeks to figure out how to get some home health help. Advertising for a PCA through the Metropolitan Center for Independent Living hasn't worked, possibly because I don't live on an easy bus route and/or because I don't need enough hours of help. Market rate is about $20 an hour for a minimum of four hours. If I paid that, I would be spending my entire income on the help. I make too much for any of the programs to which I have been referred. Should I move? Should I quit my job? Would it "help" to get divorced? Investigating all of this has been time-consuming and maddening.

Two things helped. First,a friend of mine suggested that reviewing my "core values" would make any decisions easier. Second, in a totally immature response to my towering anger over the way "the system" works, I decided to stop eating. If "the system" wasn't going to help me, I would literally take my marbles and go home. My family (after a certain amount of grief) would be better off. No more living their lives around my limitations. No more sacrificing their financial health on my behalf. (A recent study found that multiple sclerosis is one of the most expensive diseases one can have.) My determination to starve myself to death lasted about two hours and then Ralph opened a package of cheese curls. "I will just have one or two," I thought. Of course I ate a handful. In no time, I had decided that any resolution so easily undone by cheese curls was not destined for success.

A quick trip through the history of this blog and it's obvious my life has become focused around playing defense against the medical and financial repercussions of my illness. This is not my core value! This is not what I want to be about!

I decided to use my computer software as a role model: I shut down. I kept up appearances. I kept going to work. I did church tasks. I provided transportation to my daughter. Underneath, though, I was waiting.

After time spent in Overwhelm, I purposely moved into Incubation. Now I am out.

I have chosen for my life to be about the creative process. I will not give that up, not for the disease, not for the system. That is my core value. My life and this blog will focus on understanding every part of my life as creative process.

A new beginning.

Medical Update: Baclofen Pump (part 2)

2009-04-28T15:05:00.003-05:00

[View Baclofen Pump Part 1]

I spent April 14 in the hospital having the baclofen trial. Physical therapists visited me first, assigning numbers and measurements to the spasticity in my legs and arms. Then a doctor (and team)injected baclofen into my spine.

The spinal injection was the scariest part for me. In 1981, I had a spinal tap and myelogram to diagnose my MS. The injection site somehow didn't get closed. For several days thereafter, I threw up every time I lifted my head. It felt like my brain was scraping against my skull. The nurses this time warned me of the possibility of what they called a "spinal headache." The injection itself was not a big deal. (They do topical anesthetic first.) The next hour, waiting to see if the spinal headache developed, was the scary part.

Happily, it didn't.

The rehab doctor checked me about an hour after the injection and I was still very stiff. She told me it was early days and went away again. The physical therapists and doctor returned to check me two more times. At the height of its effect, the baclofen made it so that my legs were very easy to bend and move around. (Not for me to move them, because the MS damage has limited those signals.)

A representative of Medtronic stopped into my hospital room to answer any questions I had about the pump.

The main point of the trial was to see if my body responds to the baclofen, and it did.

I have decided to go ahead with the baclofen pump surgery. (To be scheduled sometime in the future.) I have confidence that I will be in less pain and will be able to sleep better. I don't know that, overall, it will make our lives easier. It's impossible to predict how hard transfers will be when we don't have my stiff legs on which to pivot.

At the moment, my legs are so stiff that I don't know that anyone who isn't as strong as my husband could help me transfer. We have to figure out how to get him some backup and making it possible for someone else to do the job seems like a first step.

Medical Update: Baclofen Pump (part 1)

2009-04-10T13:09:00.005-05:00

I get a fair amount of e-mail about my "Botox bladder miracles" post. It is from other people who are considering having the same treatment. Describing medical adventures is a strange way to make online friends, but it's also rewarding. It is one of the ways I can be of service in this little strange life I lead.

Next Tuesday, I am due to have a test to see if baclofen will ease my spasticity when it is injected into my spinal column. It is the penultimate step toward getting a Baclofen Pump.

My rehab doctor and the nurse practitioner who works with her have both remarked that my level of spasticity is one of the highest they've seen. I am usually happy to excel at something; this is an exception. The best way Ralph and I have found to get my legs to bend is to stand me on them and lean the back of my knees against something until the eventual collapse. That would be on days when my legs have decided to extensor, rather than flexor, spasm. Every now and then we have a flexor day. Those are worse for me because I'm afraid my weight, dangling with my arms wrapped around Ralph's neck, is going to totally wreck him.

I have my feet strapped to my wheelchair foot rests with Velcro ties to keep them from kicking. I wear my wheelchair seat belt all the time. Without those two precautions, I would spasm right out of my chair.

Last week we took delivery of a Hoyer lift, which now stands like some truly ugly sculpture near the door of our living room. It will fit into the bathroom, but I'm not sure how we will manage to use it. The fact that we haven't used it yet leads me to suspect it will not be our favorite option.

The nurse practitioner asked me what I hoped to get out of having a baclofen pump. I've recognized this as a trick question: she was checking for realistic expectations. I told her I hope to be dancing down the hallway, but reassured her in the same breath that I know that won't happen. My dearest hope is that I may be able to transfer independently again. I'm afraid that is about as likely as the dancing scenario. More likely, I will be in less pain and spend less time and energy fighting involuntary movements of my body.

The first step in this process was to try to combat the spasticity with increased dosages of oral baclofen. At the doctor's advice, I slowly increased my baclofen dose until I was taking 80 mg a day. We didn't notice a difference in the level of spasticity, but I did feel sleepy and stupid. I slowly tapered down. At too low a dosage, I started noticing that leg spasms would jerk me away from my desk (and my mouse) a couple times a day. I was also waking up more often during the night. I have settled on 10 mg three times a day and 20 mg before bed.

There was another medication we could have tried, but the rehab doc was as unimpressed as I was with my body's response to the oral baclofen. We skipped that experiment and are heading on to the intrathecal test.

[View Baclofen Pump Part 2]

Spinning Plates: The Efforts are Ours...

2009-03-30T07:51:00.004-05:00

I have been finding it useful, lately, to resurrect the spinning plate metaphor I used to use for my life. As a freelance web designer, I used to think of my job as one of being a circus performer spinning plates. I would have several customers at once and, moving between their projects, would give each job a spin. I thought of my life for a while that way, too, but let it go at some point.

I think it would serve me well to return.

My plates include (in no particular order): family, job, church, book, writing/art, activism, philosophy/theology, getting doctored, life logistics.

Happily, one motion often spins more than one plate.

While I have been away from this blog, I have been spinning like crazy. I wrote an essay for the Presbyterian Church in America's Access Packet. The packet is mailed to churches once a year to encourage them to include people with disabilities in church activities. That project combined church, writing, theology and activism. I did a talk for Andrew Riverside Presbyterian Church that combined writing, theology and getting the word out about the book. I have designed Lenten and Easter liturgical art for my own church.

Yes, okay, part of this is a why-I-haven't-been-blogging confessional. But it's more than that.

It is easy for me to worry over the pieces of my life that aren't getting attention. It helps if I remember that sometimes I can let momentum carry them while I attend to other things.

If I take Woody Allen's "90% of life is showing up" and marry it with the 12 step slogan "the efforts our ours, the results are God's," then my life works. I can spin 90% of the plates 90% of the time, stand back, and let God take care of the rest.

There is a more elegant take on this given by Elizabeth Gilbert in the video posted below.

[I had never heard of her before I watched this video. Impressed, I went to Amazon and looked at her book reviews. Wow! People either loved or hated Eat, Pray, Love." I decided to go with my gut: I liked the woman on video, I thought I might like her writing. It was a good choice. I enjoyed the book. I understand the envy or pain or simple personality differences behind the bad reviews, as I felt some of all of that while reading. But it's a fun and thoughtful journey.]

Minnesota's Budget: (A letter to my representatives)

2009-02-07T13:55:00.003-06:00

(I have been a bit overwhelmed lately, what with trying to deal with my own healthcare issues, wanting to be more politically active, and being an employee and a parent. Part of me longs for a sharp focus for this blog, but I have to make every expenditure of energy serve more than one purpose. This is a copy of a letter I am sending to my state legislators.)

What an exciting and terrible time to be a policymaker and a US citizen! There is a feeling of possibility in the air, a sense that things can change for the better. At the same time, we are facing horrendous budget deficits and financial insecurity.

In November, I was inspired by a video produced by AARP to take a more active interest in public policy. I am not yet quite old enough to be an AARP member, but I have had multiple sclerosis for 27 years and recently started using an electric wheelchair. I also have a long history of volunteering and working for nonprofit organizations. I am currently working as Web Coordinator for the Minnesota Child Care Resource and Referral Network.

A recent Star Tribune editorial said that “Under Pawlenty’s approach, the burden of closing a $5 billion budget gap would be felt most keenly by the poor, the sick, the very young, renters, the noninstitutionalized elderly and disabled.” That would be me and the people I care about most.

My first steps in my new hobby of political activism have been to read the legislative priorities of groups who share my concerns The Minnesota Consortium for Citizens with Disabilities and The Joint Religious Legislative Coalition to name two) and to subscribe to e-mail updates from them. To be frank, I have been feeling completely overwhelmed by the challenge facing us and the details to be wrangled. I can only imagine how you must feel.

The Organizing Apprenticeship Project and the Minnesota Budget Project helped me gain some clarity with their Kitchen Table Budget Principles. Their five principles include:

Solve the challenges for the whole community. As you look at who will be impacted, make sure that we are all sharing both the benefits and pain.

Include us in solving budget challenges. Before you make budget cuts or implement reforms, ask our communities what the impact might be, and solicit our ideas.

Invest for the long run. We cannot undermine the core infrastructure —access to education, investments in children and families — that ensures opportunities to thrive.

Look for additional resources. Reclaim our legacy by fairly raising the revenues needed to maintain core institutions that promote equity and the good life.

Invest wisely on priorities. The way to spend wisely and avoid inequities is to ensure that policy choices do not disproportionately hurt low income people and people of color.

I encourage you to read the whole document and move forward with these principles in mind.

Because of my job, I was privileged to spend Thursday helping to prepare notes for our Executive Director, who testified in front of the higher education committee about the importance of the T.E.A.C.H. program, which helps child care providers to get a college education. Taking such direct action in support of a cause in which I believe was hugely satisfying.

I am pleased that a series of town meetings is planned to get citizen’s responses to the proposed Pawlenty budget. I will not be able to attend because of my physical energy level, but I wanted to let you know that I hope you will find ways to balance the budget that do not rely on sacrifices made by those of us who are already scraping to get by.

Thank you for all you do for the citizens of Minnesota.

My Visit to the Rehab Doctor

2009-01-25T14:49:00.004-06:00

I've been waiting to write until I had something grand to say. Finally I realized that I need to get the minutiae out of the way first. It's wonderful to think that I will be philosophical and creative in my approach to disability, but the reality is that I have to spend a certain amount of time and energy dealing with the physical aspects of it. Living in the muck is part of the job. This posting is about the muck.

Last Wednesday, I had my long-awaited visit to the rehab doctor. I'm happy to report that I liked her: she has a sense of humor and, more importantly, she "gets it." she seems to understand living with a disability in ways my neurologist, sadly, doesn't.

She started by explaining that her role is to do what she can to improve my functioning. Her specialty is spasticity, and that has been my biggest challenge of late. She explained what she called a "pyramid approach" to treating spasticity. exercise first, then medication, then (perhaps) surgery.

My body is so clenched that stretching is a challenge. Ralph wrestles with my legs each morning to try to stretch my Achilles tendons. It's a workout for both of us. To add any more stretching would be difficult. But I have a standing frame, so we'll start by doing what I've been meaning to do anyway: use it three times a week.

The doctor also gave me a protocol for increasing my baclofen dosage to (potentially) quadruple what I've been taking.

We will reconvene in six weeks.

Looking at the bigger picture, she did not offer me a return to what was. It's possible, she said, that the spasticity will subside, but if it does it will probably leave total paralysis of my legs in its wake.

It was surprisingly easy, after four months of struggle, to give up the idea of "getting my legs back." From that standpoint, the long wait to get in to see a specialist worked in my favor: I am ready to move on to whatever is next.

I've been delaying the hunt to find a PCA because it's obvious it won't be easy. Getting the prognosis has given me a sense of energy about doing that. It won't be wasted effort.

The doctor also suggested that I talk to my urologist about urinary diversion surgery. She realizes that if I didn't have to transfer to the toilet, I could probably get away without a PCA as long as Ralph is in town.

It's interesting to notice that our health care system is more willing to pay for an invasive procedure then it is for ongoing care. If I do end up taking this route, I intend to make some political noise about it.

Being and Doing in the New Year

2009-01-06T16:11:00.010-06:00

Welcome to the new year. It is a time of New Year's resolutions. I don't like them. They play into my perfectionistic tendencies and are therefore an invitation to frustration. I am, though, lured by them.

This year, there is something else inviting change: my 11-year-old daughter prefers the company of her friends (even by phone) to the company of her mom. (I totally understand. I am not sure I enjoy my company much of the time.) I was trying to remember who I was before I was a mom. Eleven years ago, I was much less disabled than I am now, not to mention plain old younger. I can't do what I used to do.

So what do I do now?

When I did my first Third Step, turning my will and my life over to the God of my understanding, I was worried. I suspected that God would want me to Do Something and wasn't sure I would like it. Beyond that, how could I figure out what it was I was supposed to do? I spun around that question for several weeks. I remember the night I told my group I had figured it out. "I think God is not so much concerned with what I do as who I am. If I am who God wants me to be, then I'll do the right thing."

Who does God want me to be? That's a good question for every morning, for every situation.

I am always looking for answers from outside myself, so I spent a while surfing the web for ideas. I kept finding things that didn't fit. Then I remembered a sermon I gave more than five years ago. I read it again, cried over it, remembered how right it felt. I re-posted it to my personal website. I called it The God of Lost Causes and it is about how God heals.

God values us and values our stories

God calls us to move beyond the limitations we think we have, beyond the strictures others may place on us, beyond our comfort zones

God brings us to wholeness and affirms us as part of God's family

That begins to tell me who to be: someone who honestly shares her story and listens to others' stories, someone who recognizes that we all are family, someone who moves beyond her limitations. As I'm writing this, I realize that I'm using "doing" words, not "being" words. Let me try again: honest, genuine, interested, open, compassionate, loving, free. That feels like I'm getting somewhere.

I had another "aha moment" during a class at the Jung Association. The teacher suggested that one way we can tell what God wants us to do is by noticing what gives us joy.

I think it's important to understand what joy is as our culture often confuses it with a sort of Bacchanalian revelry. [I have to confess, here: that last phrase popped out of my mouth and then I had to look it up to make sure I meant what I was saying. This is the danger of being raised in an academic family. It turns out, I was right.] There is a desperate boisterousness that we mistake for happiness. That is not joy. When I look for a guide to discernment, the phrase that comes to me is "life enhancing." Drunken parties are rarely life enhancing.

I made a list of what gives me joy: reading, writing, nature, art (making and appreciating). Using the word "art," I stumble on another tool for discernment. The books, music, TV, etc. that bring me joy are Art. The ones that leave me tired and disappointed aren't. (Mood plays into this too and it explains why "one man's art is another man's trash.")

In honor of the new year, I am going to post both my "being" and "doing" lists where I will see them and watch what changes...

Holy Pesistence

2008-12-21T12:19:00.003-06:00

This blog has a dual function, which sometimes makes it hard to write. I'm trying to document the process of living with increasing disability. That has a practical aspect: symptoms, management of symptoms, society's supports and lack thereof. There is also the interior aspects: being a thinking and feeling person on this journey. if I were a better writer, perhaps I could blend these gracefully. Today, at least, I'm going to rely on headings.

The practical blow-by-blow

In late November I made a series of phone calls aimed at getting a personal care assistant (PCA) so someone could help me with a transfer in the middle of the day. I called my County Human Services Department, the disability linkage line, and my local Center for Independent Living (MCIL).

The county social worker was primarily interested in getting me into a program that might help me pay for a PCA. She suggested that I call another social worker who handles the MA-EPD program. I did and left a message and have heard nothing since.

I exchanged a series of voice and e-mails with folks at the MCIL and visited there last week. It was the most encouraging thing I've done in the last few months.

Centers for Independent living were started in the 70s part of the disability rights movement. The idea was that people with disabilities should be able to participate in public life as much as possible and be the directors of their own care.

The MCIL has a program that helps people hire and manage their own PCAs. The woman who runs the program described what they do and was helpful in letting me know what my next steps should be.

There are of course challenges. Getting on MA-EDP is a bit complicated, but MCIL has advocates who will help me work my way through the system. if I want to try to pay privately, MCIL will help me find and hire a PCA. The finding would be easier if I lived on a bus line and wanted more hours. It all makes perfect sense, but it's a bit daunting.

The inside story

Getting advice about what my next steps might be was part of what encouraged me about my visit to MCIL, but there was a deeper satisfaction that has taken me a while to identify: they accepted me as I am.

Part of the dance is that I want to be as physically healthy as I can be, but I have to realize that the disease is at work. The physical therapist was trying to make me better. He was trying to do what he could to restore lost function. Bless his heart. We had to try, but that opens me to grief and disappointment and feelings of not having done it right. The folks at MCIL didn't ask for me to be any different. They accepted my description of what was going on, gave me some stories about how other people have dealt with similar situations, and offered their support. It was such a relief to leave there feeling like there is a road forward, other people have traveled it and I do not have to be alone.

It is bitterly cold out here and snowed 5 inches last night, so I decided not to go to church this morning. This means that I don't know what my faith community has named the last advent candle. I suggested to my family that we think of our own name for it. (My rascally housemates have suggested that we name it Fred.) This morning, after a pain filled night (spasticity), I decided that, for me, the candle will be named "persistence." It's not as poetic as the usual hope and faith and love, but it is a gift I need to nurture these days.

It was certainly part of the Christmas story: a desert journey on a donkey, finding a place to stay...so I'm heading into the holidays trying to practice holy persistence.

Reonciliation...again

2008-12-05T16:19:00.003-06:00

I was crabby at the doctor for not sending me to physical therapy. I was hoping that going would help a feel better. So I kind of forced the doctor into prescribing it. As it turns out, the doctor was right.

Physical therapists seem to be positive thinkers (nature or nurture? ). My PT was no exception. My first visit was wonderfully encouraging. We talked about regaining use of my left leg. Failing that, we wondered if I might be able to transfer using my right leg. Failing that, we talked about the possibility of a brace helping to stabilize one of my legs to make it possible to transfer. We spent the next month exploring those possibilities.

While the PT kept his hopeful attitude to the end, suggesting I could take the brace home to try to make it work even though we had no luck at the therapy office. But, as we crossed each possibility off the list, his positivity seemed a bit more forced. He apologized before I left, and I reassured him that even he could not accomplish the impossible. Sometimes, if a body won't, it won't.

Life has changed. The speed of change has been a bit shocking. The “good old days” were the beginning of October.

I am less upset than I might have expected. If I had given up immediately, if the physical therapist had given up immediately, I think I would be more distressed. Having experimented with different options and having lived in this changed body for a few more weeks have helped the adjustment. I was noticing yesterday that Ralph and I are learning what we have to do to get me and my body washed and dressed in the morning. We understand more about what works and doesn't work and vary our techniques to fit the spasticity level of the day.

So I am living through another cycle: the frustration and panic of Overwhelm, the falsely courageous veneer I wear during Incubation, and now the beginnings of Reconciliation. That word is so perfect for me. It combines the idea of being reconciled to the change that is taking place as well as reconciling with my changed body. That is the work I have in front of me right now.

There have been—and will be—many tears, but a measure of peace is returning.

Not Dead Yet

2008-11-19T15:57:00.004-06:00

Last time I saw my neurologist, he suggested I try Tysabri. I have been using Avonex for about 10 years. Both are "disease-modifying drugs" for MS.

I chose Avonex because it is a once-per-week injection. The day after my injection, I always have flu-like symptoms: I feel tired and weak, like I'm under water. There are other medications that require more frequent injections. Doing the shot more frequently (and perhaps feeling crummy more frequently) has never had a strong appeal for me, even though some doctors think Avonex is not the most effective drug.

All the disease modifying drugs have the promise of delaying the disabling effects of MS. This has always seemed to me way too easy for the pharmaceutical companies: "Take this drug. If you don't feel any different, it's doing its job." The drugs were invented after I was already living with significant disability, but as the doctor who first precribed Avonex said, "Things could always get worse."

Tysabri is slightly different. The glossy packet of information my doctor gave me does show in colorful graphs, how it is longer before those who take it will use a wheelchair. Too late for me. The once a month infusion (administered at an infusion center) had some attraction. The info packet also included information about PML. Progressive multifocal leukoencephalopathy is a rare and usually fatal disease, incidence of which is increased by taking Tysabri. Six patients receiving the drug have contracted PML; four deaths have been linked to Tysabri. My doctor suggested it would be an appropriate medication because my MS is progressing.

Every time I worked the equation in my mind, the fact that "could kill me" was on the Tysabri side made the medication switch seem like a bad idea. It seemed that the doctor was suggesting that it would be better for me to risk death than to become more disabled. That made me remember the disability activist group called Not Dead Yet, formed to combat the spread of legalized assisted suicide.

When I think about suicide (and that is fairly frequent), I realize that I don't really want to kill myself. I want to kill a difficult situation. I want to kill the limitations that my care places on my family. I want to kill the lack of care I get from the medical system. A recent editorial in the New York Times pointed out that chronically ill Americans suffer far worse care than their counterparts in seven other industrial nations. For me, the antidote to suicidal thoughts is often to think, "If [name some level of care I am not receiving] were in place, would I still want to die?" Then I realize how much I want to live.

For instance, if I had someone who could help me to the bathroom in the middle of the day and someone who could take over my care so that Ralph and Alexis could travel, I would feel so much less a burden on them that I would stop wondering if there is a bridge over which I could drive my wheelchair.

Samuel Johnson wrote, "when a man knows he is to be hanged in a fortnight, it concentrates his mind wonderfully." My neurologist's suggestion that I risk death by taking a new medication has invited me to a new appreciation of life.

Birth of a Disability Activist

2008-11-07T14:21:00.005-06:00

It must've been five years ago that I first had the thought that maybe I should work to change the health care system. It is so obviously broken. On the other hand, that seemed like an entirely self-serving activity. Poverty seemed like a more far-reaching and important issue. I did some volunteer work for Habitat for Humanity and felt like I was making a contribution.

Since this latest increase in my disability, I have called a local agency that serves people with disabilities. I explained my situation and asked them what they could do for me. They suggested Meals on Wheels. I visited my neurologist and asked him for a referral to a physical therapist. (Each day I feel myself getting more and more clenched up and spastic.) The doctor talked about a change in medication(more about that in a later post) and gave me a referral to a rehab doctor.

Time passed. Spasticity increased.

My husband, Ralph, discovered that, according to our insurance, we could access physical therapy services without a referral. I called a PT office near me to ask about it. They explained that while I didn't need a referral, I did need an order.

healthcare speak:
Order: to give a prescription for
referral:
the process of directing or redirecting (as a medical case or a patient) to an appropriate specialist or agency for definitive treatment

I called the neurologist's nurse. Before calling me back, she must have called the rehab doctor's office. She reported that they had not hurried to contact me since they have no openings in the near future. She convinced the doctor to sign an order for PT in the meantime. The rehab doctor's office called me that afternoon to set up my appointment for late January. I have a physical therapy appointment on Monday.

Since the health downturn, Ralph has been lifting me several times a day to and from my wheelchair. He is having back pain, possibly related to lifting, possibly not. Either way, I'm sure the lifting isn't helping.

I called my local MS Society office to ask about what help we could get. Their equipment guy told me that a Hoyer lift is one of the most frequently purchased items by insurance companies. He said that he would have a social worker call me back about home health aides, but so far I have heard nothing.

The slow pace of this process and the amount of dead ends I am discovering are frustrating me.

At the same time, the world has been focused on an economic downturn and the United States' presidential election. Because of the gadget I inserted into my last blog entry, I was invited to insert another.

When I used it at the end of a day of dead-end phone calls, it felt like a Sign.

To help my family and to help myself, I must become a health care activist. The only way to make its so it is not totally selfish activity is to make it a broader effort. It cannot be about me, it has to be about us.

Bladder Botox, Take Two

2008-10-30T14:36:00.006-05:00

I am in recovery from my second set of bladder Botox injections. They were done between 11 and noon this morning and I am just little achey now.

My urologist suggested that I save both of us time and trouble by getting them as an outpatient procedure at his office. It sounded good to me. Last time, I went to a hospital and spent the morning shuttling from one department to another before I received a general anesthetic and was taken to the operating room. Simpler sounded better.

This surgery scheduler checked with the pharmacy and the insurance company and discovered that insurance would not pay for Botox given to me directly. They would pay for it to be sent to the hospital, but not for me to pick it up. The urology office has decided to experiment: I am one of four patients for whom they paid for the Botox up front, hoping that the insurance company will cover it after the procedure. Of course, they also made me sign a piece of paper saying I will pay for whatever insurance doesn't cover, so I may be paying the price for their experiment.

Another difference is that the nurses used a "numbing agent," administered through a catheter, rather than a general anesthetic. That means I got to watch one nurse to train another as she prepared the injection. My urologist uses a bright blue dye in the Botox so that he can see where his last injection was. "You would think he could tell by looking at the blood," said one nurse to the other. She looked over at me. "You have that iPod turned on, don't you?" she asked. I did, but I could still hear her. "Pay no attention to that man behind the curtain," she said, evoking the Wizard of Oz.

The new guy on staff did the actual injections, with my urologist advising while he helped two nurses wrangle my spasming lags. I had warned the nurses about my new level of spasticity and they shrugged. "We'll handle it," they said and with the nursely practicality I adore, they did. they pointed out that, because of the dye, I was getting my bladder tattooed. I asked the doctor if he could do it in the shape of a rose, but he said urologists prefer kidney shapes. It's hidden, of course, so I have only their word for it. It is fun to consider some personality adjustments in keeping with my new, tattooed, self.

Even with a half hour wait for the numbing agent, we were done in an hour.

I am taking tomorrow off work, but judging by the way I feel now, I wouldn't really need to do so.

I hope the result of this set of injections is as helpful as the first set. When Western medicine has an answer it does a fine job.

Dreaming Health Care Advocacy

2008-10-23T18:31:00.004-05:00

A few days ago I had a dream:

I am at the doctor's office. He tells me I have a tumor in my breast that needs to be removed.

I say to him, "First of all, it isn't cancer. If it turns out to be cancer, I will make sure to tell everyone and have my family tell everyone how quick you were to offer an invasive surgery and yet you have nothing to offer to help me with this chronic illness!"

End of dream.

Last Sunday, we went to after hours care so that I could get an x-ray to make sure there were no fractures as a result of the fall that has put me in such pain. We went on Sunday so that Ralph could come along and lift me on to the x-ray table. Oddly enough, hospitals and doctors offices don't have anyone available to help me transfer from one surface to another. The x-ray came back clean. The physician suggested I follow up with my regular doctor in a week if I'm still in pain.

I got a massage yesterday, buying me a couple of hours of pain-free living. I have another scheduled for tomorrow. Also scheduled for tomorrow is a call to a local agency that helps people arrange care for their aging or disabled family members. This call is the first of what will probably be several as I try to get some help for myself and my "primary caregiver."

My dream tells me that at some future time I need to expand from self advocacy (at which I am a complete beginner) to advocacy for systemic change.

AARP has a fantastic viral video that teaches about the source of change. Enter your name into the widget below and enjoy.

AARP 08 Video

Collateral Losses

2008-10-16T09:05:00.005-05:00

I am still not doing very well at keeping this blog up, am I?

I have been dealing, lately, with several physical issues, most of which aren't caused by the MS, but are part of living with disability.

My hands have been increasingly affected by the MS. By the middle of the day, it's hard for me to type. By the time I get home from work, I feel like I have flippers on the ends of my arms. This does not encourage me to write.

New solution: software called Dragon Naturally Speaking. It is a wonderful program that enables me to talk into a microphone while the software takes dictation and the computer types. As advertised, it took only a few minutes of training until the software was very accurate. I tried similar software about four years ago and it was pathetic. I would get so distracted by all the mistakes the software was making that I couldn't follow through with my thought. Here I am, at my new desk using my new software and completely out of excuses for not writing. We'll see what happens from here.

Getting Dragon software didn't cost too much money but it did have a significant price: it doesn't run on the Mac. I have been self-righteously a Mac person since I started using a personal computer. Switching to a PC ha s been a bit of a wrench. Sometimes reasonable accommodations aren't convenient or enjoyable. I end up choosing the lesser of two evils.

I have one last toenail than when I last wrote. A few years ago when we moved from California, my big toes experienced some injury that I didn't feel. My two big toenails were bruised and damaged and haven't looked quite right since. Using the wheelchair all the time, I travel the world feet-first, my footrests holding my toes out in front of me. Sometime in the last couple months, my right toe was damaged again. I assume I smashed it against a door, since the only way I can get through doors without handicap buttons is to push them with my feet. The podiatrist I visited removed my toenail. It may or may not grow back.

A couple of weeks ago I fell. It was my usual not-quite-making-the-transfer and sinking fairly slowly to the floor. This time, though, I pulled a muscle in my right thigh. Since then, not only have things been painful, but I am unable to transfer without Ralph lifting me from one surface to another. This is a big blow to my independence.

I went to church la st Sunday and the service included an anointing for people praying for healing. I didn't expect it, and as soon as I went up front, I started to cry. I hope not many people could tell. My friend Carolyn, who is one of my angels, lent me her shoulder. She had polio as a young woman and uses a wheelchair, so she knows the frustrations.

I hope that this injury will heal and I will be able to regain some independence. Meanwhile, this is a wake-up call that I need to identify some additional support for us. Carolyn helps me understand that I need to take responsibility for getting what I need.

I am mad that I can't just turn my case over to some social worker who can identify resources and get me connected to them. Case management seems like a huge, tiring, undertaking. I complain that it isn't fair and that the health care system is broken. That may be true, and I often think that I should become more of an advocate for systemic change. What I need to do right now, though, is start making some phone calls. It is better to light a candle than to curse the darkness.

Trial and Error and the Serenity Prayer

2008-08-19T14:41:00.003-05:00

Two things happened four months ago that made blogging almost impossible for me: I started using a wheelchair and increased my work hours. I was using an old "student desk" with a knee hole about fifteen inches wide. My wheelchair footrests don't fit in that width so, for some weeks, I sat at an angle to the desk with my arms stretched out to reach the keyboard. After six hours using the keyboard at my office, my arms were too tired to type without support. I stopped typing at home. Terse emails. No blogging.

It took me a while to realize that's what was happening. I had to live through a few weeks when I thought I just wasn't getting around to it before I realized I was avoiding my desk. It took a bit longer to figure out a solution and implement it. Now I my desk is a sheet of plywood, set high enough so my knees and chair roll under it easily. Today I reached a switch at the back of my computer, something I couldn't have done prior to the desk switch. Yay, an unexpected benefit. I'm hungry for those.

I'm still learning how to live with the wheelchair. It's all trial and error. This morning I tried putting the wheelchair in a different spot when I transfer to the toilet. I've been asking for help with that transfer almost all the time. That means I have to be accompanied to the bathroom—a pretty limiting factor. I've made the transfer once with the chair in the new position. It's promising, but I won't know until I've tried it several times whether it is the new "procedure." That's the nature of this beast.

I've been thinking about the nature of the adjustment process. It's really the process of learning, the process of experimenting.

First, (as I discovered with my blogging impediment) I have to recognize a problem. I have this informal goal of adding to this blog every other week. The "missed that one" signals had to add up to a noticeable point. Life does intervene and I want to allow it, but I want to honor my commitments to myself, too. I had to be conscious that something wasn't right.

Then I had to identify the characteristics of the problem and apply the serenity prayer. ("God g rant me the serenity to accept the things I cannot change, the courage to change the things I can, and the wisdom to know the difference.") One of the things that's not right is that my hands and arms are increasingly affected by my MS. By afternoon, my fingers are missing as many keys as they hit. I can't change that. I do better if I can rest my arms against the edge of the desk and, with that old desk, I couldn't do that. That was something I could change, so I (with help) did.

My husband built my new desk. The project description: the new desk had to be high and wide enough to roll under. It had to be positioned so I could drive to it. It had to be near power. Ideally, it wouldn't be in our living room. Here I am, enjoying all those features. I'm at the "trying the solution" part of the process and I'm mostly happy.

This solution involved rearranging, basic carpentry skills, some time and some screws and plywood: a low-risk trial. My toilet transfer difficulties might be solved by purchase and installation of a $500 grab bar...or they might not. I'm experimenting with wheelchair placement because it's a cheaper alternative. The "error" part of this equation requires being willing to be wrong. It's a risk of time, money and those most precious commodities (especially with chronic illness in the picture): physical and emotional energy.

When the solution doesn't work, I'm back around to recognizing and analyzing the problem again. The good news is I have more information. The bad news is I have more emotional baggage. I (like much of the world) have been watching parts of the Olympics. For me, watching someone walk is miraculous. Imagine my stupefaction at seeing the edges of human capabilities. More wondrous, these kids can make major mistakes and then return to super-human perfection for the rest of their performance. These athletes are not just demonstrating physical skills; they are psychological Olympians as well. When what I try doesn't work, I have to get over it and find something else to try.

The hardest part, for me, is to be willing to do this over and over, to be willing to have this be my life. There seems to be so little stability, such a small amount of coasting. My life is an effort. Wishing for it to be otherwise, I lose my patience and my peace. It is better for me to accept the never-ending process.

Recognize the problem
Identify the characteristics of the problem
Find a potential solution
Try the solution
Be willing to be wrong
Analyze—and release—the failure
Try something new
Be patient with the process
Repeat steps 1 through 8 forever

The Real Wheels: When OCD Comes in Handy

2008-04-25T08:20:00.003-05:00

I took possession of my very own wheelchair ten days ago. I've been working hard ever since. I used a scooter most of my waking hours for ten years. With a wheelchair, EVERYTHING is different.

Years ago, I remember watching my toddler niece moving through her world. She was discovering the basics of moving with an upright body: When you're standing on something, you can't pick it up. When you climb over something, you swing one leg over first, get your balance on the new side and then swing the other leg over. She was a problem-solving critter. Everything was experimenting; everything was learning.

That has been my world for the last ten days. I need to discover and remember new procedures for moving to and from the toilet, the shower, the bed and the driver's seat. I need to learn how to maneuver the wheelchair down ramps and narrow passages and through doors. I am conducting a constant time-and-motion study.

OCD, obsessive-compulsive disorder, is popular in the media these days. I believe most of what we label mental health disorders are human tendencies carried to an extreme. We are all on an obsessive-compulsive continuum. It's a disorder when it gets in the way of living our lives. My OC behavior is actually working in my favor lately as I try to wrangle my body and wheelchair through the world.

So far, the transfer with which I've made the most progress is the one to and from the toilet in my home bathroom. It goes something like this:

Position wheelchair facing the grab bar, but at a slight angle.
Turn chair power off.
Unclasp seat belt and move belts to sides of seat.
Use hands to move right foot on to left foot rest.
Swing away right foot rest.
Use hands to move feet off left foot rest.
Swing away left foot rest.
Shift left hip forward in chair until left leg has an extensor spasm.
Lean body forward to keep spasm from traveling into torso.
Grip grab bar with left hand.
Position left foot about five inches from wall.
Push with right hand against wheelchair arm rest while pulling grab bar with left hand and maintaining spasm in left leg.
Swing body into standing position with weight on left leg.
Hold grab bar with left hand.
Use right hand to pull up dress.
Hold dress hem in teeth.
Use right hand to lower underwear.
Move right hand to left wheelchair arm.
Release left leg spasm.
Lower bottom to toilet, pulling on grab bar and wheelchair arm to avoid torso spasm.

That completes that process. I'll spare you the next one, which is the catheterizing procedure.

Steps 12, 13 and 19 are the trickiest ones, as I try to create, sustain and release a spasm. A spasm is, after all, "a sudden, involuntary, muscular contraction or movement." Involuntary is "done without conscious control." I'm dealing, by definition, with the impossible.

Then there are steps 15 and 17, where my increasingly weak and floppy right hand sometimes loses its grip, necessitating a "do-over" for which my pitiful left leg may not give me time.

Let's not think about the number of times I've tried to stand without unclipping the seat belt.

Some day—in a month or six—I will have figured out how to do all these new movements and won't have to think so hard or retry so many times. Until then, I have to make my peace with a background buzz of mental and physical exhaustion.

Road Trip Report

2008-04-08T13:07:00.004-05:00

Two days ago we returned from a trip to Walt Disney World. From our house to our hotel was 1.565 miles and Alexis had a week for her spring break. We left Friday afternoon, spent two nights in transit and arrived on Sunday. A week later, we did it in reverse.

I'm glad we went, but it was a hard trip for me. We last visit WDW five years ago when I was able to transfer from my scooter, often without help. This time I basically needed to be lifted for every transfer. I was just getting over the cold/flu from hell and that made me weaker and sadder.

We asked for accessible hotel rooms and got them all but one night, but what that means varies wildly. The best stop gave us lots of room between furniture, grab bars near the toilet, a roll-in shower and a lowered sink in the kitchenette area. The least convenient accessible room just had some grab bars in a fairly small bathroom with tub and no shower stool.

Disney does a great job of serving people with disabilities and we also had a good book, PassPorter's Open Mouse. Disney makes their buildings pretty accessible, provides information about the accessibility of rides (sometimes you can stay in your wheelchair, sometimes you have to transfer to a standard wheelchair, sometimes you have tø transfer to a ride vehicle, etc.) They have special seating areas for performances and parades that provide relief from the typical experience of using a wheelchair in a crowd--what I (inelegantly) call "the butt show." They also train their staff ("cast members") to be helpful and friendly. Passporter's provides detailed info covering a good range of disabilities, including autism and ADHD.

I didn't attempt any rides this visit and that reality was a bit difficult for both me and Alexis. We have fond memories of riding Test Track twice in a row because a kind cast member, having seen how difficult the transfer was for me. suggested we go around again.

Happily, Disney has a good amount of "companion rest rooms," where Ralph could help me transfer. Most states have them in rest stops, too, which made the car trip easier. If everybody would stop installing toilet paper dispensers right above the grab bar, it would be even better. (It's so common it must not be part of the ADA. It would be great to add it but, last I looked, we are playing defense.)

What with needing help in the bathroom and not going on rides, it was easy for the "I'm-a-burden" monster and its sibling to roar loudly. I kept thinking (and sometimes saying), "I should have stayed home." (But, as I'm not independent, we would have had to hire help or impose on friends and relatives, which gives that monster even more to say.)

My favorite parts of the trip were the Disney fireworks shows and riding through Tennessee. One of the best things about humans is our capacity to appreciate and create beauty. and surprise. Disney increases both beauty and surprise by adding lasers. water, fire and good stories to the shows. Tennessee's Smokey mountains surrounded us with green pines and purple redbud trees. Rust-colored rock faces beside the road opened for small waterfalls. Beautiful and elemental.

A coworker took her four year-old to Florida and when we asked what his favorite part was, he said, "coming home." I was delighted to return home to a bathroom I can often manage on my own. That's part of travel, isn't it? Appreciating what you find when you get home.

Smaller Life, Part 2

2008-03-18T09:29:00.002-05:00

When my daughter, Alexis, was about three, she rode a variation of a merry-go-round. As she came towards where I was sitting, I would wave at her. "Are you going to wave every time?" my husband, Ralph, asked. "Yes," I said and I did. There are many things I can't do for my child, but I can always be her audience: watching for and acknowledging her accomplishments.

I've been thinking about my role as audience as I've been moving towards a smaller life. Since I last wrote, I've resigned from two volunteer activities. Both of them involved Saturday morning meetings. I take my Avonex shot on Friday nights, which means I often feel lousy on Saturdays. I don't trust myself to drive when I feel weak and muzzy, so Ralph and Alexis have been driving me to the meetings. They've been gracious about the whole thing, but I've been longing for some slow-moving Saturdays.

The first time I worked through Step 3 of the Twelve Steps, I was in my mid-twenties and obsessed with "what God wants me to do with my life." I hadn't been in the program too much longer before I decided that God cares much more about who I am than what I do. I need a God who will nudge me away from my unhealthy attachment to accomplishment.

When I consider what I mean by "a smaller life," my fear is that I will become a useless couch potato. What I'm trying to move away from is a level of activity that might work for some people, but has been leaving me exhausted, resentful (from whence I go easily to guilt-ridden) and frequently in tears. There has to be some middle ground.

It seems to me it's about setting priorities. Googling "setting personal priorities" was dangerous because it led me to many goal-setting, success-oriented sites. Those easily suck me into heroic models that don't fit my life.

So I return to the idea of myself as audience. Suppose I made it my mission to watch for and acknowledge the accomplishments of those around me? Rather than pretending I can give up my focus on Doing, it tweaks it a bit. I don't have to give up my natural tendency to admire accomplishment, I just have to give myself permission not to be the doer. That sounds like it's worth an experiment.

P.S. The insurance company has approved a wheelchair.

Moving Towards a Smaller Life: Strategic Withdrawal and Yieldedness

2008-03-04T09:48:00.005-06:00

It's a hard time of year and a hard year.

In Minnesota, the below-zero wind chills (and temperatures) are over-staying their welcome. I can look out my window and see a snow pile five feet high. I'm ready for the return of warmth. I'm ready to be rid of these layers of clothing that make it harder to move. I'm ready for less effort.

Some of my exhaustion IS about the time of year and some of it is about the way I've been living my life. I recently got a fortune cookie that advised me (in words more poetic than I can recall) to spend my energy in ways that give me more energy. It sounded like good advice, under the circumstances.

My life is full of balancing acts and this is one of them. On one hand, I want to be active and involved. I want to be LIVING life. This desire is made stronger by the knowledge I have—a body-knowledge deeper than head-knowledge—that next year I will be able to do less than I can this year. This idea of my being in decline is rejected by many people around me. They imagine it is pessimistic or, worse, that it will be self-fulfilling prophecy. My experience, in this body, is that it is a realistic expectation.

This is not a post about the power of positive thinking though, that, too, is one of my balancing acts. This is about the tides of activity level and how to surf them.

In the last few years, I have been increasing my activity level. We returned to Minnesota and I wanted to get back to some groups I had missed. New opportunities (including a part-time job) presented themselves. My "strike-while-the-iron-is-hot" attitude was in ascendance.

Now I find myself over-extended and tired. I need to decrease my activity level and that isn't easy. I feel like I'm letting people down. The pop-psychology idea that I'm "not saying no to others, I'm saying yes to myself" seems like selfish drivel.

The phrase in my mind this morning (I grew up in the waning days of the Vietnam conflict) was "strategic withdrawal." "One of the reasons for withdrawing," (says someone who has some connection with the "military classroom") "is that the terrain cannot be defended, and thus we withdraw to terrain that can be defended."

In my personal life, it's about deciding what I want to "defend." That's where it gets sticky because my withdrawal from something is saying it's not important to me and I worry about hurting people's feelings.

I bumped into another word this morning: yieldedness. In my reading, the context was Amish thought (Amish Grace) and surrender to God's will. In my life, I saw it as an invitation to accept the realities of living with chronic illness.

A friend of mine recently died after a couple years of wrestling with pancreatic cancer. In her eighties, she opted for surgery and chemo and fought more aggressively than I would have. She bemoaned the fact that all she could do some days was sit on the couch. She hoped to return to a more active life.

Visiting with her was a gift to me because she was a gift to me...even as she sat on the couch. Her life took place in a very small space and yet she continued to teach and give even when she was not aware of it.

I have been imagining that doing and being active is somehow a measure of my worth. I have thought that "living large" is somehow a virtue.
i exhausting, one that does not have to be defended. I am feeling called to yield.

[This feels like part 1 of something longer...we'll find out.]

Botox bladder miracles

2008-02-19T13:14:00.002-06:00

Warning: this post concerns incontinence, a subject that disturbs some people. It disturbs me, too, but I'm in the process of convincing myself that we human beings could support each other better if we talked about it.

So I've been telling people about my recent experience: A couple weeks ago, I received botox injections that were definitely NOT cosmetic. They were, rather, a treatment for incontinence.

I first started having MS-related bladder symptoms in the late 1980s (not quite ten years after being diagnosed). MS-related nerve damage affects bladder function in a few ways. Nerves fire causing muscles around the bladder to spasm. That causes the brain to think, "I gotta go." Conversely, when the brain tells the sphincter to let go, the message doesn't always get through. So I felt like I always wanted to pee, sometimes peed without warning and sometimes couldn't pee when I tried.

My first response was to wear pads in my underwear to avoid accidents. That worked for a while, but I reached the point where my first stop at any venue was the restroom. My neurologist referred me to a urologist who promised, "I'll give you your life back."

The first step was a urodynamics test: the bladder is filled and emptied through a catheter so medical folks can watch what it does. It showed I had urinary frequency, urgency and hesitancy. I started taking oxybutynin, a medication that reduces spasms in the muscles around the bladder. I also learned to self-catheterize. When I needed to pee, I'd insert a small plastic tube along my urethra so that I could fully empty my bladder. Because that increases risk of infection, I also took nitrofurantoin, an antibiotic targeted to bacteria that cause urinary infections.

I did feel like I had my life back: less fear of embarrassing moments, less needing to know the location of every restroom in every port of call.

That combination worked well for about ten years. At some point, leaks started occurring again, often enough that I began wearing "disposable underwear." Luckily this was at about the same time that bladder taboos relaxed enough that such products were available at Target and Walgreens, rather than only by special order.

A little more than a year ago, I realized I was going through three or four pairs of underwear each day and was wet much of the time. Two factors were at work: my urinary symptoms were increasing and my legs were weaker. I would delay or avoid visiting the restroom because I was afraid of falling when transferring to the toilet. My neurologist suggested another urologist consult.

After trying some alternate medication (which didn't work as well), my urologist scheduled me for another urodynamics test and an ultrasound to make sure my kidneys were not being damaged by urinary back-ups. Then he suggested the Botox treatment. Botox injections into the muscles around the bladder paralyze them. No spasms means no urgency and no frequency. He made it sound like an easy, in-office procedure, but cautioned we'd have to get insurance pre-approval.

I was surprised and anxious when the scheduler called to set me up for "surgery" and advising that I see my regular doctor for a "pre-op exam." My doctor declared me "healthy, aside from the obvious" and assured me pre-op exams are the norm these days "just to cover somebody's backside."

The surgery was surgery: six hours at the hospital with a flurry of forms, repetitious checks of name, birth date, drug allergies. The (20 to 30) injections were done, thank goodness, under general anaesthesia. I was sent home with pain pills I didn't use.

Symptoms increased slightly for a few days and, the Tuesday after the Thursday surgery, a miracle occurred. No urgency; no frequency; no leaks. After all these years, this is a heaven-opens-angel-choirs-sing miracle.

The downside is that this is a temporary condition that will last some months. At some point, symptoms will return and we'll have to do it all again. Until then, I have my life back. Again.

Second Attempt at a Wheelchair

2008-01-22T09:49:00.000-06:00

For the past week, I've been driving (off and on) an Invacare wheelchair. As promised by the Rehab Specialist, this model addressed many of my earlier frustrations.

The mid-wheel drive made the chair much easier to steer (even with a joystick) and made for a tighter turning radius. Swiveling sure beats the forward-back motion of the scooter!

The smaller size meant I could (with some planning) reach the floor.

Shorter armrests allowed me to get closer to sinks, computer keyboards, etc.

With swing-away footrests, I could transfer more easily. (The bathroom at work continues to baffle me, though. If I get a wheelchair, I will have to ask for some accommodation, but WHAT, exactly?)

There were still some problems. With my vast, two-wheelchair experience, I can separate (I think) the ones that come with wheelchair territory from the ones that can be addressed.

Carrying stuff with a wheelchair is going to be tricky.
Getting through doors will take caution and strength.

But, we can find a different headrest (the loaner had a Stealth headrest) that will not spear passing ten year-olds.
We can adjust the footrests so they're not at odd angles.

The wheelchair is definitely more comfortable and maneuverable than the scooter. Assuming I get one, it will usher in a whole new learning curve. After today, the issue will be in the lap of the insurance gods.

Dealing with Difference

2008-01-08T09:46:00.000-06:00

Almost thirty years ago, in Professor Wu's Chinese Philosophy class, I fell in love with the Confucian idea of corrective action moving from the personal to the global. First you change yourself. That changes your family, which changes your village, which changes your country, which changes society. (I do see the counter-argument here that this leaves individuals safely navel-gazing rather than challenging the existing power structures, but I like the practicality of reachable first steps.)

I realize that my own relationship with disability is moving from the personal to the political.

So far, I've been focused on my own internal experience of living with disability and chronic illness: coming to terms with the unexpected abnormalities of my body. I'm choosing that word deliberately. The imaginary construct of "normal" may be one of our least useful. I grew up expecting a normal life. I hoped secretly to be extraordinary, but never considered the root meaning of that word: "outside the course of normal events." For twenty-five years, I have been learning how to cope with being abnormal.

Perhaps most of my work has been internal because my disability has stayed within the bounds of "inconvenience." Yes, I have been visibly disabled for the last ten+ years, but I have been able to function, for the most part, as a normal person. In the last year or so, that has been changing. Until recently, changes in my environment could compensate for my physical limitations. That is no longer true. There is very little "normal" left in my life.

On the other hand, this is a fairly normal situation."According to the U.S. census in 1997, roughly one out of every five Americans qualified as disabled. That is 55 million people; 33 million people qualified as severely disabled. The numbers are probably much higher than this. And as Americans live longer, their chances of being at least temporarily disabled rise significantly. Yet the irony of disability is that it is both present and absent." (Who’s Not Yet Here? American Disability History
Susan Burch and Ian Sutherland) Twenty percent of us are abnormal because of disability. If we start adding other abnormalities into the mix, there will be no one drinking at the "Normals Only" fountain.

For the last several years, I've struggled with accepting my own differences. Now I'm wondering how to apply what I've learned to the wider world. To be honest, I'm also wondering how to teach the wider world to respond to me. This connects, I think, to my earlier post about mutual help

For the last twenty years, I've been working to apply my understanding of the creative process to the rhythms of chronic illness. My new "research project" is: What does it look like to be a person (family, village, nation, society) that responds compassionately, courageously and creatively to the differences among us? How do I embody that in the world?

There's a good project for the next twenty years.

A First Attempt with a Wheelchair

2007-12-18T08:12:00.000-06:00

Last Thursday, Shawn, the Rehab Specialist, loaned me a Permobil C300 wheelchair to try for four days.

The idea of switching from the scooter to a wheelchair came from a phone conversation with a driving specialist at Courage Center. Earlier this year, I fell frequently when transferring to the driver's seat in the van. The woman at Courage explained that, if I used a wheelchair, I could drive right up to the steering wheel, use an automatic lock-down device, and drive with no transfers. This would, it seemed, prolong my independence. My neurologist agreed and signed a prescription for a wheelchair evaluation and purchase. My husband agreed and arranged for an ibot test drive. That was loads of fun, but I was not surprised when the insurance company (after months of consideration) said we would have to pay most of the $29,000 ibot price.

I set up an appointment with a vendor of more traditional wheelchairs, who sent Shawn to visit me. We probably went off in the wrong direction immediately because we discovered we're both Renaissance Festival fans. Shawn suggested a couple of chairs with good cross-country capabilities and delivered the Permobil as a test.

Understand that, in the intervening months, I'm noticing everything I hate about the scooter. It's uncomfortable; my butt is frequently aching by noon. Several times a day, I have to use my hands to lift my feet from one side of the tiller to the other. If I want to get close to something, I have to parallel park the scooter and swivel the seat. When working in our little kitchen, I have to go out, turn the scooter around, and bring it back in.

By the time I get the loaner chair, I've built a fantasy of how great this is going to be.

I hated it.

First, due to a misspent youth reading books instead of playing video games, the joystick control is difficult. My right hand feels so weak so soon that we change the controls to the left hand. That feels safer, but I later discover opening doors is difficult. (I have to reach the door knob with my left hand and then can't drive through the doorway without the door starting to close on me.) The wheelchair is actually wider than my scooter, so getting through the doorway is harder.

Transferring is more difficult (this, I expected) because I don't have a tiller-height handle to push against. Also, I have to bend down and flip up the foot rests. Not an easy manoeuvre, as I have no control of my feet.

After a few days using the wheelchair (off and on, because I don't trust myself to transfer from it without help), I have a whole list of cons...and a few pros. I'm wondering whether this switch is really what I want.

Sunday night, I'm testing the wheelchair in the bathroom at work. Yay, it fits in the stall! How the heck do I get the door closed? I swivel one direction and still can't reach the door. I swivel the other and reach it. I can (with difficulty) get those foot rests flipped up. I can cling to a grab bar, get my dress up and underwear down, swivel and sit. How am I going to get up? The other grab bar has a mongo toilet paper dispenser two inches above it AND the two grab bars are so far apart I can't reach both and push against them to stand. I need my scooter tiller!

Other people with disabilities make wheelchairs and bathrooms like this work for them. I must be doing something wrong or missing some obvious solution or I could make it work, too. Okay, I think, if I get the surgery to install the supra pubic catheter, I won't have to transfer and can use a wheelchair. I'm considering surgery to make up for the limitations imposed by technology and architecture.

Yesterday, I heard a radio report about the Little Rock Chili Incident, a story from the struggle to integrate schools in 1957. Minnijean Brown Trickey, the African-American woman (then girl) who was involved said she tried hard to be perfect, but couldn't be. The message she got was: "You have to be perfect to come to our imperfect school." She says, "That is the nature of racism: you can't measure up. We'll make sure you don't measure up. We'll do everything we can to keep you from measuring up, for as long as this country exists...And we'll do that so well, you'll think it's your own fault."

Once again, I am surprised to recognize that my situation is a human rights issue. I realized I have been thinking it's my fault.

I have one mentor in this whole disability thing: a lovely woman named Carolyn who had polio as a young mother (of four). Over the years she has been a quiet advocate of disability rights. Her advice to me was to make sure I get what I want. "You're the one who will have to live with it," she said. "Don't let them sell you something that doesn't meet your needs."