For as long as I can remember, people have told me my life would make a good book. They say this because I was born with a severe, progressive neuromuscular disability. I've never walked or stood. I've always used a wheelchair. I'm also a Harvard graduate, a husband of 17 years and the father of two girls under the age of 11. I suppose people envision a sort of "My Left Foot" meets "The Paper Chase."
I couldn't see writing a book about my life. I've always rejected being an "inspiration." Like most people with a disability, I've simply lived my life using whatever resources were at my disposal. It's not like I had any choice. Besides, there are dangers in being put on a pedestal. It may be flattering, but it can also be marginalizing. You're too lofty to date or get job offers, yet not free to feel bad, sad or angry. You can easily be left out, segregated and trampled on.
Yet several months ago I began writing my memoirs. Why did I change my mind? At 43, I'm seeing my experiences in a different light, although I worry more about what legacy I'll leave my kids than what other people think of me.
The truth is, I'm not the only one who has to deal with physical problems. I've had friends my age die. And last summer, at my 25th high-school reunion in New York City, nearly everyone had some sort of health-related restriction. No fat, please. No salt. I'd like to say they all looked great, but honestly, there were wide variations. The funniest were the ones who had facial features--noses and ears, especially--that seemed to have stretched to clownish proportions with age. Our bodies betray us.
Even mine. If I ever thought I was exempt from acquiring other ailments--I've paid my dues, haven't I?--I was embarrassingly, emphatically wrong. Two years ago I developed ulcerative colitis, an incurable digestive disorder. It's manageable, but figuring out which drugs to take and at what dosages is a grueling ordeal. Plus, there are still awful flare-ups.
But dealing with life's curveballs is not entirely unfamiliar. At my lowest points, I wonder if my wife and I will remain healthy enough to enjoy the rest of our lives. But my mood always bounces back. Somehow I'm able to draw on an ever-filling well of optimism. It's a coping mechanism that I've learned from years of living with disability.
Reflecting on this and other lessons I've gleaned from my unusual life is precisely what motivates me to write about it. I know all about accepting, even embracing, variations from the norm. Some limitations are maddening, of course, but others become opportunities for flexing my creativity. For example, when someone is trying to help me but doesn't understand what I'm asking, I can't demonstrate. I'm forced to come up with different words to explain it. "Please move my right hand forward. No, to the front more. Uh, toward the table ... " I think of this when my computer suddenly doesn't do something it's supposed to do. My 78-year-old father marvels at my know-how. But the reason I'm able to solve its glitches is that I'm conditioned not to give up hope.
For me, persistence has been necessary--lifesaving, in a sense. I've had to learn to absorb what's thrown at me, and go on. That doesn't make me anything special. Many, many people face extraordinary odds every day. It's entirely feasible to keep going. Don't get me wrong. I'm too cynical and smart-alecky to be anyone's idea of a Pollyanna; I get angry and depressed. Yet I know firsthand that anything is possible, and so, deep down, how could I be anything but hopeful?
In an era of terrorist attacks, unthinkably high gas prices and a tight job market, perhaps this is a worthy message. As a nation we feel vulnerable, confused, enraged. A sort of nihilism besets our days. How many were killed today in Iraq? What's the latest verdict in the Enron/Tyco/DeLay case? Which hot author is under fire for plagiarism now?
Part of what keeps me optimistic is knowing I've benefited from incredible progress in technology, which has enabled me to drive a motorized wheelchair with the slightest of finger movements and use a computer by voice. I've seen the flowering of the disability-rights movement and the enactment of access regulations. Perhaps most of all, I've managed to find love and have a family. Why shouldn't my luck continue?
And if other people find my story inspirational, I guess I'll just have to live with it.
