Wednesday, October 14, 2009

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

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.

Wednesday, October 7, 2009

Meshing with Mistakes

(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.

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

  2. an interwoven or intertwined structure; network.

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

  4. 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:

  1. to become enmeshed.

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

  3. to match, coordinate, or interlock.

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

Weaves, knots and open spaces

weave artIn 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.

gears art

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.

Friday, September 11, 2009

Creating Who I Am

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:
  1. making a drawing every day was a concerted effort.

  2. I felt good about them after doing them.

  3. 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...

Wednesday, August 19, 2009

Advocacy: healthcare reform

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.


  • 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.

Tuesday, August 4, 2009

Cyborg Serenity (Baclofen Pump, part 3)

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.

Sunday, June 28, 2009

A Reminder from a Brave Knight

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 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.

Friday, June 12, 2009

Claiming my True Identity

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 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.

Sunday, June 7, 2009

Reset, Restart, Focus or Saved by Cheese Curls

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.

Tuesday, April 28, 2009

Medical Update: Baclofen Pump (part 2)

[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.

Friday, April 10, 2009

Medical Update: Baclofen Pump (part 1)

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.

PHOTO OF LIFTLast 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]

Monday, March 30, 2009

Spinning Plates: The Efforts are Ours...

line drawing of guy spinning platesI 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.]

Saturday, February 7, 2009

Minnesota's Budget: (A letter to my representatives)

(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:

  1. 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.

  2. 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.

  3. Invest for the long run. We cannot undermine the core infrastructure —access to education, investments in children and families — that ensures opportunities to thrive.

  4. Look for additional resources. Reclaim our legacy by fairly raising the revenues needed to maintain core institutions that promote equity and the good life.

  5. 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.

Sunday, January 25, 2009

My Visit to the Rehab Doctor

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.

Tuesday, January 6, 2009

Being and Doing in the New Year

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...