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.