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

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

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...

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.

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)

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

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

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

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.