At what age do you suppose it's appropriate for a person to begin harboring the idea that he's destined for greatness? For me, it was 7. My parents convinced me that I'm capable of accomplishing anything I set my mind to. They were also misguided enough to encourage me to pursue my dreams. They meant well.
When I wasn't under their watchful eye, TV was my tutor. Marcus Welby, M.D. and Medical Center, two shows from the late 1960s, had a profound effect on me. Ironically, I was also deeply moved by Pride of the Yankees, the story of Lou Gehrig, starring Gary Cooper.
The first time I saw the Gehrig movie, mortality wasn't on my radar. I was just a kid, and I didn't understand what was so heroic about being strong when a doctor tells you you're going to die. But in the face of those early images, I decided that when (not if) a doctor tells me I'm dying of the most horrible, crippling disease imaginable, I'm going to make a cheesy joke and pretend I don't give a hang.
Around the end of 2001 I started to have some problems with my voice. If I wasn't careful I would sound drunk. I also became short of breath more easily than usual. A couple of months later I began to feel a slight loss of dexterity in my fingers. When a few months of excessive drinking didn't fix the problem, I decided to give the medical community a crack at it.
On September 10, 2002, after almost a year of symptoms, a lanky neurologist in his late forties, with a pudding-bowl haircut and a Burt Reynolds mustache, told me I have amyotrophic lateral sclerosis. I smiled and said, “Today, I consider myself the luckiest man on the face of the earth,” the famous line from Lou Gehrig's farewell speech at Yankee Stadium and a highlight of the movie. His face twisted into a question mark. So much for my corny joke.
ALS robs you of virtually all mobility. Breathing and eating eventually become impossible without a breathing machine and feeding tube. There is no known cause, cure, or treatment, and usually within two to five years of the first symptoms, it's punt city…the big snooze…the final bow, no encore. Get the idea?
I don't remember much about the time between leaving the doctor's office and getting home. I called my mom because I promised her I would. It was like no one on the street or on the train had a face, and I wondered how many of them had just been told they were terminally ill. I was in a bad mood.
Now begins the party, i.e.: breaking the hearts of all the poor fools who once depended on me for strength, wisdom, humor, and the light of meaning in their otherwise bankrupt lives. It's no fun to witness the reaction of someone who loves you in the face of news like that.
At first I experienced an incredible amount of support. But as I became more dependent, there was a sharp decline in calls and visit. Once people become accustomed to bad news they tend to get on with their lives.
Now, a handful of friends stay in touch with me. Along with my family and home attendants, they help me maintain the delicate balance between being physically dependent and maintaining control of my life.
I'm in my sixth year of living with ALS. By maintaining a strict diet and by taking vitamins and supplements, I believe I am much further from death than I would be had I not become educated and involved in my care.
Rosa Parks and Dr. Martin Luther King Jr. were heroes. But if Lou Gehrig hadn't been famous when he got sick, how many people would see him as a hero today?
I suspect everyone is a hero to somebody, if only themselves. I never became a teen idol, and I still haven't perfected that recipe for chocolate-covered bacon. Nevertheless, I don't feel like a disappointment to the 7-year-old I used to be. My life, just as it is, provides me with countless opportunities for greatness. And even if it goes unnoticed, I often feel pretty damned heroic.
Who's my hero? Whoever comes up with a cure.