Here’s what happened. After our seven-year old son Andrew was tucked into bed and Jay was snoring with the New Yorker on his face, I decided to draw. When we were in Portland, Jay bought this very cool book that gives easy instructions on how to draw mythical creatures, like dragons, Quetzalcoatl, Greek gods, and Thor. Andrew, is intensely interested in these things. He’s reading a series of books that involve the Greek gods. He’s also a blossoming artist, so the drawing book seemed like the perfect fit for him.
As all you parents out there know, predicting what your kid will like—as opposed to what you think he or she should like—makes reading tea leaves look easy. It’s not that Andrew didn’t like the drawing book. But he was decidedly whelmed. I, on the other hand, was enchanted at the prospect of drawing Medusa. So, last night, when the house exhaled with the sound of Jay and Andrew’s sleeping, I found the book, paper, and a pencil, and started to draw.
Let me be clear: I don’t draw. My mother is a talented artist, and I’ve always admired, respected, and envied people who can make a recognizable reproduction of a slice of the world on canvas or paper. I like viewing art, and even did well in a college art history class. But my talents have hewed to the written—not the visual. Drawing a straight line or a stick figure has vexed me. Rather than push the boundaries of my definition of myself as someone who doesn’t draw but who writes, I’ve reified them, fortified them, and then militarized them.
Then I had a kid—a kid who seems to have inherited his Grandmother’s gift of making something beautiful with a few lines, a kid who wants company while he doodles, a kid who won’t take “No, I don’t do art, I do writing” as an answer. “Draw with me Mommy,” is something I hear a lot. I hate disappointing Andrew. I worry that my sickness has robbed him of too much of me, so I can’t arbitrarily reject an activity that I’m physically capable of doing.
In the past few years, I’ve learned that I can draw a stick figure—and sometimes a little more. Even more valuable, I’ve grasped that it doesn’t matter—if the lines in my drawings are crooked, if my people look like rabbits and my rabbits like raccoons, if it’s all “wrong.” No matter how shoddy my drawings are, Andrew always studies them and says something like, “Good job, Mommy” before lowering his head back to his own page. Somehow that kid pushed me to accomplish something that years of therapy, loads of self-help books, and hours of “positive thinking” couldn’t. When I’m drawing with Andrew, I’m able to let go of the gnawing, nagging perfectionism that dominates too much of my life and leeches the color from activities I want to be “fun,” but instead become slogs to achieve something adequately “good.”
Until last night, though, I’ve never drawn something on my own. I’ve kept it as one of those mother-child activities. But I had a blast drawing first a grumpy looking troll and then a regal Quetzalcoatl, the feathered serpent god of the Toltecs and Aztecs. The drawing book broke the process down into easy steps that even I could follow. I lost all sense of time as I penciled in the troll’s long toe-nails and the snake’s plumage. I turned the drawings into “good morning notes” for Jay and Andrew to find at the breakfast table. I was having such a good time that I was a little sad when I finished getting the drawings down on paper, but I also felt refreshed and creatively “re-charged.” In other words, I had fun.
This got me thinking about fun. Why was the experience of making these sketches so rewarding? I’ve believed that the writing I’ve chosen as my profession is something I find fun. So why don’t I feel a similar sense of being caught in a river of fast-moving creative juices when I sit down to write most days? And why don’t I find my chosen recreational activities—reading, listening to books, writing blog entries, playing piano, exercising, watching television with Jay, and cooking—half as fun as my night of drawing?
I think it’s partly because I tend to take everything way too seriously. It’s the dark side of the perfectionism that pushes me to do things well. It can cause me to dwell not on the process of chopping vegetables to choosing words, but instead on the end product, be it a “good enough” dinner or essay.
But it’s more complicated than perfectionism run amok. I think my lack of fun is related to living in Chronic Town. Sarcoidosis steals so much of life. The exhaustion many of us with chronic illnesses contend with means that I sleep away half my life—and then I barely feel like I’ve got enough energy to make it through a day. The surgeries, chronic pain, all-day drug infusions, and constant medical appointments erode even more of my life. With so little time and even less energy, I suppose it’s no mystery why I don’t devote more of my limited resources to activities like drawing. It’s logical that I spend my finite energy on the activities that give back to me: work and my relationships with Jay and Andrew.
I’ve written before that we all live in Chronic Town, whether or not we’re sick with a chronic illness. Plenty of people who aren’t sick read this blog. I think it’s because the topics I write about—trying to live fully in a body that’s falling apart, living with an awareness of mortality, contending with ever-changing variables, searching for balance—are what life—not just sickness is about. We’re all trying to make time for fun in lives that are crowded with obligations. Women, especially, are at greatest risk to become the caregivers who make sure everyone else in the family is able to have fun—expect ourselves. We drive the kids to art classes and soccer camp, cook nutritional dinners so the family will have the energy to pursue their passions. We work to make others happy. But what’s left for us?
I wish I’d been able to experience motherhood without the long shadow of illness. I got diagnosed with sarcoidosis when Andrew was only three months old. As he’s grown, the disease has grown too, in its insidious way. My guess is that some of my struggle for time and autonomy and my own space to work and have fun aren’t the dark side-effects of illness, as I often think of them, but are instead the normal consequences of rearing a new human being. There’s nothing I can do about the timing of sarcoidosis, but I know I’m lucky to have Andrew, lucky to have time with him, lucky that I can learn from him.
I’m not giving up my responsibilities as a mother so I can have more fun. I’ve fought too hard to beat this disease that I’d even consider ceding my obligations to Andrew. I’m also not abandoning the hard work I’m doing to return to work as a writer. I’m not shutting down this blog either. Nor am I planning on quitting spending time with Jay. I’m proud of my family, my work, on the many roles I’ve accepted—and I won’t give them up.
But I am going to draw more, play the piano more, color more. For a few minutes here and there, I’m going to make something beautiful that is mine and that exists for no reason other than being beautiful and mine.