I’m a painter. I make the largest part of my living as a salesman for an optical company, but for the past 10 years painting has been the major part of my life, the leading edge. It seemed ironic that this thing would attack first the part of my body I used to keep the rest alive.
It started about 18 months ago. I was painting, and I’d only been working for about 15 minutes, when my right hand suddenly became weak. I looked at it; it was as though the hand had become a foreign object.
I went to a doctor. He couldn’t find anything. But the strangeness in my body continued. Small muscles would begin to jerk, twitch, without reason; a finger would dance. I went to a hospital in Toronto, then was transferred to another, and there they made the diagnosis: motor neuron disease.
Motor neuron disease is a progressive condition. The signaling apparatus of the nerve cells deteriorates; you lose fine control first, and develop weakness in some parts of the body. Then, as the disease proceeds, entire parts of the body begin to cut out. Eventually, in the classic case, the loss of function extends to the respiratory system. The body removes itself from life, piece by piece.
I was 41. Nobody told me flat-out that I was going to die. I finally asked one doctor, and he said, “If I were you I’d live 20 years in the next two.”
My right hand has become almost useless, the fingers have lost their plasticity. The flesh is sinking into the join between the thumb and the palm.
But there’s no pain, at least not yet. Motor neuron disease is a civilized disease, a process of reduction. Perhaps that’s why medical researchers haven’t concentrated on it; that, and the fact that it’s rare. Maybe one in 20,000 per year in Canada.
Lou Gehrig, the American baseball player, died of motor neuron disease, if that interests you.
So, I’m dying. I don’t know exactly when. Motor neuron disease is progressive, but not smoothly progressive; the condition can become stable for months at a time, then suddenly fire up and destroy sections of the body within weeks, then level off again. If I were a classical case, I’d be dead. Or flat on my back in the hospital. But not yet.
Before my illness was diagnosed, my marriage had broken up.
Not because I was ill, certainly. Our lives together had become incomplete, until the lack of completion was the most important thing about the marriage. I fought hard for her to stay. Too many things were changing at the same time; too many things were coming apart.
I’ll make this point right now: I am not encouraging pity. (That sounds pitiable, in itself.) I am writing this, creating this,
for a number of reasons. Because I’m an artist — if I can’t paint, I’ll write, I’ll sing songs, I’ll get out of me what I can. Because I’ve lately heard of a woman, a friend of a friend, who was told she was terminally ill and crawled into a hole and won’t come out. Because I’ve found the last year and a half to be the best of my life. I have a chance to face and plan my death, to control it, even to make it a work of art. Somebody said once that living well was the best revenge. Dying well is the last painting.
When the hand gave out, when I couldn’t paint anymore, I began to write, to talk into a tape recorder in the middle of the night. Writing presents the same problems as painting: images, economy, effect, idea. For example:
Tape: I’m getting close to the end of my ball of string now. Sometimes I feel like throwing it so my sheep dog can catch it and play with it. But she’s smarter than me. She’d bring it back, drop it at my feet and I’d still have to pick it up, unravel it. Undo the knots. Like everything else, it does have an end. I can’t run away.
Dying well is like assembling a collage. Take the best bits and pieces from here and there, assemble them, make them mean something.
I met Cathy in the hospital. She’s a neurological nurse. She saw my charts, my measurements, before she saw me. She knows what motor neuron disease does to people.
I can’t explain it; it is as though we have never loved before, either of us.
When I am holding her, she can feel the tremors moving through my body.
It’s a field day for the macabre, of course. I’m 43, she’s in her early twenties. I’m sick, she’s not. But what are we supposed to do? Shrug our shoulders, say wouldn’t it be lovely if he didn’t have it, and walk away from each other?
Someone asked, “Well, is he rich?”
My real friends didn’t pity me when I told them about my illness. My real friends understand about Cathy.
We will live well, as long as we can. Nobody can do more than that. We will get married, we will be happy.
I’ve never been frightened. I’ve béen frustrated: why, for God’s sake, me? I’ve been angry. And, at one point, I was depressed. I thought about suicide. Not after I met her. Then, I didn’t have anything to live for; now I have.
But I will not become a vegetable. I’ll make sure of that, if I have to.
I think about death, about the point of death, the instant it happens. I’ve heard that people rescued on the point of death are angry, fight against
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being returned. For them, death is ecstatic. Maybe for me. And maybe there’s something else to come, something beyond death; I’ll leave that open. There’s certainly not much reason to make up my mind at this point, is there?
At first the disease tried to humiliate me. I couldn’t do things a man should do; I couldn’t open a wine bottle, I couldn’t strike a match, I couldn’t cut a tough steak, I couldn’t move the gear lever in my car from park to reverse with one hand.
Now I don’t care. I will not be humiliated by a condition. Cathy’s a nurse, and has firm ideas about what I can do, and what I can’t; she makes me pour, lift, shake. Other things she does.
I see my children, my two girls, Jennifer and Laurel, 11 and eight years old. Not as often as I’d like, but then I could never see them as often as I’d have liked. They know I’m ill, but they don’t know what I have, they don’t know what it does. There’s a lot of private pain associated with this, but so far that’s the worst of it.
I keep their pictures in the apartment.
Death as liberation.
I discovered I loved so many things already, and found so many new things to love. Good wine, good paintings; I’d always lived well, without effort, but now I am deliberately living well. Reducing life to essentials.
I would never have met Cathy without this. Or perhaps, if I had, if I’d been the routine man I was before, I would never have seen her as she is; she’d have been another pretty girl with dark hair and a smile.
My painting changed, the colors became lighter, the shapes less defined. I’d always painted from the inside of my head, and the geography of that place had changed.
Cathy says I can paint again, if I try. Maybe. I’ll strap the brush to my wrist, if I have to.
New friends, and the loss of some people who had been friends, but
couldn’t handle my illness. It seems it’s almost shameful to die, as though you were a counterfeiter of life.
T ape : I can’t stay on the periphery forever. Sooner or later I will have to step over the line and let my deepest thoughts come to the surface. They can’t and won’t be denied. Like everything else, they need room to breathe. They will have their way.
Well, that’s what this is, months later. Then I thought I’d have to start thinking; now I am thinking. It isn’t as hard as I was afraid it might be.
Part of the frustration is that the disease is always with me; not a sharp pain that comes and goes, but a constant gentle spasm, running along my body. It’s almost ludicrous. It’s as though I were losing focus, slowly becoming indistinct. A reminder from my nerves: enjoy yourself, friend, listen to music, drink wine, talk with friends, we’re here with you, all the time.
The ripples are memoranda of signals not received. I’m a victim of bad signaling.
They don’t know much about motor neuron disease. That sounds vague, but everything about the disease is vague, including the symptoms. It almost always affects people between forty and sixty, but God alone knows what sets it off: a latent virus, perhaps. But why? How?
Maybe somebody will come up with something. I’d be a damned fool to count on it.
My future is indistinct, so I think about the past, and live in the present. Memories: a girl in Reno, Nevada, who supplied me with an idyllic summer. My cottage north of Toronto, where I keep my paints.
I’ve never been around anybody with a serious illness; my father died, very suddenly, but it was too fast to think about. I’ll be the first person I know to die. Interesting.
“I complained that I had no shoes, until I met a man who had no feet.” I once met a man who was suffering from
a similar degenerative disease. He couldn’t move. I was bouncing around, full of energy; he lay there, envying me. You can live for 20 years with something like he has, just a pair of eyes in useless flesh. Thank God it’s not that, anyway.
This is all a very delicate business, isn’t it, writing about death? I hope I don’t offend anybody. Somebody accused me of being on an “ego trip.” Well, who the hell is more entitled to have an ego, and to take trips with it?
After mature consideration, I have concluded that I am a good man, worthy of love and friendship. Is it any wonder I want to explain such an excellent fellow while there’s still time?
I sold almost all my paintings, but then called some of them back, to photograph them. Strange to see them again. I can’t think, really, of anything different that I would do to any of them, any mistakes I would correct: I’ve changed so much lately that they were done by somebody else, maybe a brother. I like them, though. They’re not bad. They’re really not bad.
Tape: An artist once, with paint I put my feelings on canvas. No longer able, I turned to words. A parallel so close. I painted what I saw and loved. Now I write about what I feel and want.
John B. Parkins, 43, five-foot-eight, 170 pounds, brown eyes, brown hair (greying), painter, writer, optical salesman, traveler who will never get to all the places he wanted, husband, father, lately loved.
Conceivably all this is artistically invalid. Perhaps you can’t make a work of art out of a thing like this. But I’m trying to; that’s the only possible response.
Perhaps it’s even pompous to die with your mouth open, talking about what you see. To send messages until the very end. Maybe it is ego: hey, world! Look at me! I’m doing something that’s really interesting!
I hope not. Judge for yourselves. I have things I love, people I love, and I’m not afraid. ■
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