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11/6/97
COMMENTARY: Why I reach out to the public and discuss my life with ALS
By BRIAN DICKINSON
ILLNESS TRANSFORMS US. I am learning that my own illness has transformed my mind as well as my body. These changes, I tell myself, are not all bad. I feel compelled to share my experience - my "journey," as one doctor described it - with others. I hope that this sharing helps them.
Is it presumptuous to imagine that other people may want to witness the progress of my incurable nerve disease? Probably. Yet, after four years of wrestling with amyotrophic lateral sclerosis (ALS), I realize that public interest in my situation still runs high. The interesting question is: Why?
Illness, after all, is presumed to be a private matter. The decorum of disease suggests dim lights, drawn shades and nurses speaking in hushed tones. So it often is. But sharing has its value, too, in no small part because health (good or ill) is perhaps the most universal element of the human condition.
America today is conscious of health as never before. We learn the habits of good health early (although many of us will not adopt them as our own). We avidly follow the news of medical research, gaining an education along the way. And we track the national health care debate with a scrutiny unmatched on any other public issue.
This focus suggests why some strangers pay attention to the way my family and I are coping with my ALS, or Lou Gehrig's disease. It is a rare malady, striking only one American in 10,000. But ALS belongs to a family of cruel neurological disorders that includes Alzheimer's, multiple sclerosis, stroke and Parkinson's disease. Innumerable families have had to confront one or another of these diseases. Interest in their mysterious origins, and in possible treatments, runs deep.
I will often muse on such wide-ranging questions of a morning, before my "activity" starts for the day. Thankfully, I have not lost the capacity for reflection. With arms and legs useless, and with my speaking voice long since eroded to nothingness, I can do little else. So I think, and not always - actually, not even often - about my own predicament.
I think about people I know who are ailing - a rather long list. Mentally, I trade in the coin of memory, recalling our sons when they were small and unpredictable, recalling friends in my minuscule high school class (32 seniors). I recall watching stupendous sunsets from the front porch of my wife's girlhood home in western Colorado. I recall piloting a sailboat along the coast of Maine through a dense fog; walking with my wife, Barbara, on our snow-hushed street after the 1978 blizzard; travels, holiday gatherings, memorable snapshots and vignettes of every sort. No matter how many mental visits I make, the harvest is always rich.
This meandering through my past is surprisingly sustaining. Why? Partly because, in deciding which memories to call up, I am in control. Not so when I consider my present routine, dominated by the mechanics of keeping my invalid self comfortable. I am exceedingly well cared for by my family, a couple of superb physicians and dedicated nurses. Even so, I acutely feel the loss of control over my own doings. I am dependent on others in nearly every way for my survival. I dare not dwell on the faculties and kinds of experience that I've lost since 1992, when ALS swooped down. But I know that it would make a numbingly long list.
Yet as I type these words on my special, eye-activated computer, the same questions keep intruding. Why do I stay in the fight, knowing that ALS is going to win in the end? And how do I imagine that writing for the public about living with this damnable disease will do anyone any good?
As to the first question: I still enjoy life, surprising as this may be to some. The world has so much beauty. I long to drink in all of it that I can. I have unfinished writing projects before me. There are friends to see, music to hear, old movies to watch. (Sounds like a character from Dr. Seuss.) I want to see our three sons launch their own families and careers. Further, my family and I agreed when this craziness began that we were in this fight together; I'm not about to let them down. What's more, researchers keep learning more about nerve disease and - who knows? - they may find a way to halt ALS while I'm still around.
As to writing for a public audience about my experience: Why not? Information is power. My going public multiplies the awareness of ALS, which in a small way could bolster support for research on neurological diseases generally. I believe that it can help other patients to see how one family copes with a grave disease. We in the sick portion of the population can cheer each other on, so to speak. This sharing reinforces an understanding that, ultimately, we are all in this together.
To be honest, I also have a perfectly selfish reason for reaching out to strangers with accounts of how I am dealing with a malady that has left me a voiceless quadraplegic. This sharing reaffirms my identity, my existence. It reinforces the fact that I am alive. I'm still me, despite what anyone may think, looking at me in a wheelchair, silent and motionless. Appearances can deceive. I am still here. To me, no other statement could be more important.
The brittle fact of my disease still carries a surreal quality. Although it is hard to overlook the evidence of illness - tubes, hospital bed, wheezing ventilator - I sometimes look on it with a kind of detachment. Lying in bed awake in the early morning, watching through the treetops as the sky slowly lightens, I feel perfectly fine. The radio brings music. Barbara comes in with a cheerful greeting. The sun begins to warm my bed.
Is mine a strange life these days? Perhaps, in the eyes of some. But it's not a bad life, even so.
Brian Dickinson is the Journal-Bulletin's editorial columnist.
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