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10/19/97
COMMENTARY: How I decided to tough it out: My unlikely battle with ALS
By BRIAN DICKINSON
I WATCHED through my window the other day as yellow leaves drifted down from our big backyard hickory, and the thought struck me that I have now been seriously ill for nearly five years. Neurological disorder, y'know. Most people refer to it as Lou Gehrig's disease if they must refer to it at all, which thankfully is not often. My malady always kills, sooner or later. Even after five years, I have trouble accepting this icy shred of truth. How can this be? I ask myself. I find that I am in a state of continuous surprise, like Alice falling down the rabbit hole. How unlikely this circumstance into which I have blundered! How improbable! How inappropriate! How wrong!
At least "Lou Gehrig's disease" is a handier label than the one doctors throw around. Amyotrophic lateral sclerosis. What a mouthful! Nasty disease, nasty name. Would it be a less insidious ailment if it were called, say, "Bob" ? We could experiment, thinking up shorter names for all the diseases with windy Latin-sounding or Greek-sounding names. Why not try it? Nothing else seems to work.
My disease is something of a medical black hole, with clearly discernible effects but only generalized theories as to their cause. For some reason, the body's motor nerve cells, which normally transmit vital electrical instructions from the brain and spinal cord to the muscles, simply cease to function. That's all it takes: a sit-down strike by billions of specialized cellular operatives that all together would not begin to fill a teaspoon. It doesn't take much, as my Grandfather Dickinson might have said, to gum up the works.
In truth, I should be surprised to realize that my disease has left me surprised. After all, the customary order of things is stillness, rest, decay, entropy, stasis. Even primitive organisms are driven by such a complex array of chemical processes that the very existence of any life is astonishing, or should be. The wonder is not that most species are eventually laid low by disease, but that so many species, in such extraordinary variety, have adapted and survived the stresses of organic existence.
Yet our culture has placed such high importance on the individual, and has attained such skill in safeguarding the individual physical self, that most of us chug along for decades untroubled by having to confront our own mortality.
This widespread perspective - that good health is the norm, is a given in most lives - may be unique in human history. I'm not knocking it. For most Americans, long and healthy lives are the norm, bolstered by good nutrition and access to a matchless system of medical care. Our attainments in this area can hardly be overstated.
For me, though, it is precisely this overwhelmingly positive mainstream assumption (that health and long life will nearly always prevail) that left me so incredulous when ALS arrived. As diagnosis after diagnosis ruled out other possible causes of my symptoms, I ducked the implications of the gathering evidence.
I simply could not conceive that I, a healthy American male of 55, who had never been visited by a malady worse than a rotting appendix, should have collided with a rare killer disease. It was more than a shocking piece of medical news. It was outlandish. It was utterly warped and nonsensical. It went so beyond my frame of reference that I might have been living in some weird parallel universe, where flowers spoke aloud and the sun always rose in the west.
I suppose that my continuing disbelief, as my arms shriveled and my legs gave up their power to stand, meant that I was engaging in some egregious act of self-deception. In refusing to accept the evidence of my failing body, my subconscious was trying to protect me. To a certain extent, that self- deception has continued right up to the present. Intellectually, I know that I am in the grasp of an invariably fatal disease, and there are moments when I am acutely aware of this nasty fact. But I also have times when I nearly forget that I'm gravely ill. If my eye-activated computer is behaving itself, I can write in relative comfort for hours, even to the point of forgetting that I am hooked up to a ventilator machine for the rest of my life.
All true. All intrusively, wrenchingly sad. I must not be understood as in any way trivializing my present predicament. That would be hubris of the most dangerous sort. Yes, I do have times when I fall to musing on the prospect of my own death. How will IT be? Fast? Slow? In peace? In abject terror at what may or may not lie ahead for me? But I also have trained myself to push those sentiments into the background, most of the time.
This mental conditioning did not come naturally. In the first dark days after receiving the dire ALS diagnosis, in December 1992, I floundered about in a choking miasma of disbelief, confusion and fear. Quite soon, however (and aided, it must be stressed, by the courage of my remarkable family), I resolved to stay in the battle as long as it made sense. Nothing was said to establish this as a covenant. For all I know, my wife and sons assumed from the outset that we were going to tough it out.
Why? Really, now: Why should I put myself and my family through this rough time?
For answers, I might recall Sir Edmund Hillary, who in 1953 became the first person (along with his heroic Sherpa guide, Tensing Norkay) to conquer Mt. Everest. Asked why he had undertaken such a challenge, Hillary replied: "Because it is there."
In roughly the same vein, I have considered my ALS as far and away the stiffest challenge that I ever could face. It is There, unmistakably. In the end, of course, "it" will win. It always does. But along the later stages of the journey that we call Life, big challenges can mean difficult choices. That many have such options - essentially, to flee or fight - is for me a remarkable example of the independent human spirit. I have elected to stay in the game - for now. Others in my medical situation would choose differently, and that, blessedly, is their prerogative.
As for me, I still feel fine. I've just listened to the audio version of the prize-winning nautical thriller, The Perfect Storm. I followed the twists of a bang-up World Series. I am writing a book. I am indeed fortunate to have a devoted family, whose doings I avidly follow. And I'm grateful to think that by publicizing my situation, I may help others who are ill.
Brian Dickinson is the Journal-Bulletin's editorial columnist.
Editor's Note: It was George Leigh Mallory, not Sir Edmund Hillary, who said "Because it is there" when asked why he wanted to climb Mt. Everest. The attribution was inaccurate in the above column.
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