November 1, 2009
I used to be a player, but now I am a spectator, sitting in the stands as others scramble for the ball I once slammed across the net or carried down the field. I used to hike with my wife, climbing the steep slopes of summer or trudging the back roads of fall as the foliage changed from green to gold and inevitably into a dark, withering suggestion of what it had been.
Perhaps the crumbling leaf is a metaphor for the conventional life, in which all seasons are known and change comes at its own rhythm. Such a time on the planet is to be cherished and celebrated.
Autumn comes early for people with chronic illness, sometimes very early. For those who learn loss in their youth, the physically active world stands at a distance, and they are forced to sit it out. For those of us who knew the exhilarating expectation of the limitless life for at least a few decades, the quality of loss is different. Our hands grasped the fullness of what might be. We had it all before we had to watch in horror as it slipped away.
Arms, hands, fingers start to fail. The silver screen of vision begins to fade to black. Standing turns to sitting. Muscles shrink. The list goes on.
My diagnosis of multiple sclerosis came at 25. My eyesight was ravaged by age 30. Function faded through the years, and the crumbling continues. But one thing I can say with conviction is that I’ve had—I still have—a great life.
The question the chronically ill must answer is this: are we going to be victims? Not me. When I first heard my diagnosis, I made the instant decision to keep going for the gold. It must have been in my DNA; I grew up with a sick father who never gave in. I had no illusions about defeating MS, but I knew that I would win in my life. My determination was never in question.
There is no prescription for perseverance. We have to reach down deep to find it from within. When the world says we can’t, we have to tell ourselves we can. On the theory that this is our one shot in this world, we must go for it with gusto. We must never let illness cause us to lose faith in ourselves, to become spectators of life rather than players.
Truth is, I’m only stuck in the bleachers when I get down on myself for being less than I was, too often forgetting I am, in fact, more because I have learned the hard way.
When the day arrived that I could no longer run or toss a ball with my young children, it hurt me more grievously then it hurt them. They hardly seemed to notice. We substituted chess for football and learned to talk about ideas as we struggled to kill each other’s kings.
Today, my children are in college. There is a palpable joy in our house when they return home with the portion of tales they are willing to share with their parents. Only the laughter upstairs hints at what the other portions say. Success in life can be viewed in the eyes of happy children.
Long ago, I wrote an essay in which I said that a diminished man lives in my house. I believed that back then. I used to measure my life by the flawed yardstick of physical abilities alone. I have since discovered the cerebral world; I know now that who I am is in my head.
I’m no longer sure what diminished means, even as my body continues to fail and cognitive problems plague me. Shouldn’t a life be judged by what it means to others? Shouldn’t we be measured by more than the power of our biceps or the strength of our legs?
I have helped raise a successful family. My beautiful wife lies next to me every night. I have chased news around the world, written books, and said what I have to say. Maybe we all should be so lucky. Too often, we who are chronically ill fall into the trap of measuring ourselves by conventional means and not by what we are able to give to those around us.