Drawing the Chicken 4: Art and Illness

Because the body never leaves you alone.

As I write, I am in the midst of a bit of a health scare. No, not scare, that’s the wrong word. It’s more of a new piece of information that needs to get interpreted and incorporated into my everyday.

I have lived most of my life with two major illnesses— a corneal dystrophy for which I have had an average of one eye surgery every year over 30 years, and a gland disease that surfaced in my teens and has also led to major surgery, lots of pain, and the need for endless doctor visits. For years, we assumed that my generally low energy levels are simply a by-product of all of these surgeries and all of the healing my body is constantly working on. But now it’s looking more complex: even when I’m not actively unwell or recovering from something, my blood work suggests very high inflammation and infection in the body. As I speak, my doctors and I are beginning to look more intensively for autoimmune disease, and simultaneously, I am finding ways to preserve heart health with food and exercise.

It’s another step in a long medical journey, and for the most part I’ve gotten very good at being poked and prodded in hospitals. I’m not devastated: It’s a new version of a challenge I’ve undertaken many times before, and while it isn’t fun, I do feel more equipped than most to take it on.

But then, there is the fatigue.

How to describe this fatigue? Can you imagine your bones yawning and stretching and and trying to catch a nap while you go about your day? And then can you make that image less cute in your head? That might be one way to describe it. It slows you down when you need to coast. It makes it necessary to have an office with a bed for power naps, sometimes several in a day. It makes a 10 minute bicycle ride into an intense morning workout.

When I was in college, dealing with the worst months of my gland disease leading up to my surgery, I used to write letters back and forth with my body. I don’t remember the content of those letters (I wish I had kept them!), but I remember the anger I felt then at my body, refusing to keep up with my brain. I was that geeky kid who absolutely loved reading, writing, and learning (who are we kidding? I’m still that geeky kid), but I spent a whole year of college awaiting transplants in both my eyes, walking around with my right arm in a sling — bleeding and incredibly painful — and on codeine painkillers that made it impossible to think clearly. I’m not really sure how I got through that, but I know that those angry midnight letters when I was in too much pain to sleep made a big difference.

And then, months later, I took my first creative writing class. I took those angry letters, and I turned some of them into poems. Not wonderful poems, but just enough to know that something powerful could come out of such powerlessness— that the loneliness and isolation of illness could be something to connect around through my words. It felt like magic.

I don’t write very much about illness any more, not as an act of self-censorship, but perhaps simply because it has become the background of my everyday life, something I only notice occasionally, like the sound of the ceiling fan whirring overhead as I write. I have gotten used to planning my annual work calendar around a surgery— there’s nothing much to say about it, you just set a month or two aside and make sure it’s not at any peak moment in your other work cycles (I kid you not, I put “have eye surgery” on my quarterly to-do list this month, and about 10 points down on the list because I almost forgot to make a note of it!). And I have gotten used to planning on lower energy than most, knowing that there is no way my body could handle an eight hour workday, and finding ways to adapt, constantly, as my body changes.

Many younger writers who live with illness reach out to me to ask how I do it— and I recognise that they are often simply looking for hope, the hope that maybe they can do this too. Of course they can. I wish I had more answers, some kind of grand plan that would work for everyone. I don’t. All that I have learned over time is to stop writing angry letters to my body, to start finding ways to be gentle with it, cook for it, put it to bed, and to reassure it: My art can wait if it needs to, you get better first. My body is doing its best with the resources it has, as I believe most people are too. It doesn't deserve anyone’s berating, mine least of all.

I’m not much of an advice giver, but if I had to, I would only say this to anyone else who is ill and hoping to create anyway: Ask your body questions, write it letters, let it write and talk back— and then, listen. Show up for your body like you would show up for a friend. Your body will never abandon you; don’t abandon it either. You art and your life will both be better for it.