Limbo (20 page)

 

Sixteen years have
passed since I gave up the piano, since one door shut and a window opened, since I entered the life I am living today. It's a good life, made up of the people I love, the novels I've written and those I plan to write, the students I've taught who have come and gone, the places in the world I have seen and the places I long to go. In four more years, at forty, I will have been disabled for half my life, but although “probable multiple sclerosis” continues to appear on my medical charts, I still do not have a definitive diagnosis. Recently, I've started treatment at an integrative medical center; my physician there believes I'm
struggling with an autoimmune disorder brought on by childhood inoculations. Who can say? I have altered my diet, as instructed. I have acupuncture treatments twice a week. I've weaned myself off my latest anti-inflammatory prescription; instead, I swallow fistfuls of nutritional supplements and Chinese herbs.

Is it helping? friends and family want to know.

I tell them that I think so. I tell them that I have to wait and see.

There was a time in my life when I would have said this kind of uncertainty was unbearable. When I believed I could not live without a prognosis, a reliable map by which I might plan out my future. When I believed that an explanation was nothing less than my due. When I fully expected a closure as final, as satisfying, as the end of a Beethoven symphony.

I was formed by a place where the roads met at right angles, a landscape in which cause and effect were visible for miles. I was raised to believe that every question had its single, uniform answer, and that answer was God's will. But the human body, like the life it leads, is ultimately a mystery, and to live my life without restraint, to keep moving forward instead of looking back, I have had to let go of that need to understand
why
what has happened has happened and, indeed, is happening still. In some ways, my health has gotten worse in recent years. My vision blurs when my
eyes get tired, and this means I have had to learn a whole new way of writing, arranging ideas in my head, doing the bulk of my work off the page. I've given up movies and watching TV; I read very little; I no longer drive.

On the other hand, the inflammation in my arms and legs has stabilized since my early twenties. As a result, I'm in far less pain. I can write with a pen if I take frequent breaks. I use a scooter instead of a wheelchair, and months will pass in which I'm able to use it for distances only. I can stroll into a restaurant if somebody pulls the car up to the door. I can pace a few laps in a swimming pool, provided I don't do it every day. But I've learned not to take such luxuries for granted. Without warning, I can have flareups, bad spells that can last weeks, even months. During those times, night pain keeps me from sleeping, and I move through the day as if in a cloud, relying on the scooter for everything I do. Motion and light leave my head aching; I write in ten-minute snatches, the font size set at sixteen. These are the times I need stiff wrist supports to type, to handle silverware, to hold a telephone receiver to my ear. These are the times I wake up in the morning and wrap my ankles and elbows and knees before hauling myself out of bed. These are the times when it's hard not to dwell on the larger issue at hand: what if I don't snap out of it this time? What is going to happen next?

Yet, in one way or another, this is everybody's question,
and one of life's few consistent blessings is that we cannot know the future. At any moment, all that we claim as our own might be instantly swept away. But perhaps it's this precarious balance that drives us to value what we have, to cling to the world as we do. And isn't it all we do not know that constitutes possibility?

I think of the ancient mapmakers charting the flat reaches of the world.
Here there be dragons
, they wrote along the edges of the known continents, warning ships away from the uncharted waters beyond. No doubt there could be dragons, and worse, out in the mist. But one might just as easily sketch an island of flowers, rainbows, and flying fish, wonders that have yet to be imagined.

This, then, is the map of my own making. This is the story I am learning to live.

Cover design by Eric Fuentecilla

Cover photograph © Photonica