A Self-Destructing Suicide Plan
In 1988, at the age of 42, I stumbled into a disease process that is technically known as diffuse progressive systemic sclerosis. The common name for the disease is scleroderma which translates loosely to ‘rock skin.’ But the name is seriously misleading because it isn’t just the skin that can get hard. Scleroderma is a kind of designer disease, affecting everyone that it gets differently. Some people get a very mild form which has its own name, morphea, and manifests as little white spots on the skin. In other people, the process moves inward, muscles and tendons harden, crippling them from the outside in. In some cases aggressively ambitious collagen — which is what is doing the hardening — goes after the internal organs as well, affecting everything from breathing to digesting. That’s the type I lucked into; it was additionally tagged ‘rapidly progressing,’ because it was taking over so much of me so fast. My body, on a mission sent straight from hades, was being turned bit by bit by bit, slowly and painfully into scar tissue, inside and out, as though it had been mistaken by my immune system for a terrible wound that needed to be healed over, (which it kind of was).
It hurt. It hurt like hell. This is one of the diseases that the give the right-to-die movement reason to exist. It hurts if you move; it hurts if you stay still; it hurts if you breathe. Everything hurts — a lot — all the time. Even crying hurts and that hardly seems fair. There is no known cure for the disease and death is almost inevitable; it’s usually a slow death that can sometimes take many years, a death that you pray will just please come and get you.
I spent the first year of the disease process, thanks to the generosity of my mother, going from doctor to doctor trying to get a diagnosis. In the beginning, just my joints hurt; the pain was exquisite. I could not rest my elbow on a tabletop without a lightening strike of pure fire shooting through my arm. But it didn’t look like much on the outside. I was also utterly exhausted and that didn’t look like much, either. A couple of doctors told me that I was “just getting old.” I knew damn well getting old didn’t feel like that; I’d seen people get old. It wasn’t until I was well into the disease, had been living with it for about six or seven months, that enough damage had been done to enable some good doctor, who turned out to have been a student of my mother’s in medical school, to diagnose me correctly and give me the bad news.
There was almost nothing that I could enjoy in life and almost nothing that I could do without enduring a pain that was startling. My skin was starting to make me look like a mummy and because of my bent arms and legs, I had an insect-like quality that lent me an alien look. That particular look is the reason why most people don’t know about scleroderma, because most of people that have it stay inside, well out of sight. I didn’t. I couldn’t drive because my hands were so crippled and, like everything else, it hurt, but when it was time to go grocery shopping, I would go along for the ride and ‘to help’. I knocked more cans off the shelves than I actually got hold of, but some people were kind and would assist me even though I looked like something out of a freak show. The bold ones would ask what was wrong with me and I was happy to explain it, glad for the opportunity to have more people know about this disease that I knew mostly affected women and was for the most part unknown.
But when explaining the disease that’s killing you is the best part of your day, death still seems like a pretty good option. I thought about suicide daily… and nightly as well. Sleeping did not come easily. I thought about all the possible approaches that were available to me for the purpose of ending my life. In my condition there were many fairly simple things — like wrist slitting — that I simply could not do for lack of dexterity and strength, and the things that I could do were the sorts of things — like drug overdose — that might’ve landed me in even worse shape and I couldn’t bear to think about what that might look like. But one night as I lay awake, thinking about the dinner I hadn’t been able to eat much of that night, it suddenly occurred to me to just stop eating.
I’d launch a hunger strike essentially, against life. My God, it would be so easy. No one would notice because everyone else in the house was at work during the day and I could just say that I’d eaten earlier and no one would be any the wiser. With that realization, I actually fell asleep. It was heaven.
When I awoke in the morning something very strange happened. I was lying still on the bed, allowing consciousness to overtake me, feeling a pleasant surprise at having been able to sleep so well, when all of a sudden, in my mind’s eye, I saw a picture. Despite being an artist, I don’t often see pictures in my head, so this came as a surprise, as did the picture itself which was of seven odd-shaped little bushes on a prairie-like hillside underneath which were the written words “seven reasons to live.”
Immediately upon seeing the picture, as if I’d been tapped with a cattle prod, I leapt out of bed, immune to whatever pain might have presented itself. On a good day for me I could barely move, so that was odd. I knew that I had to get that image down on paper or canvas or something. I got myself dressed, went down to my studio, wrapped up a brush in foam rubber and stuffed it into my mostly clenched right hand so that I could make a crude version of the picture I’d seen. Upon completing it I noticed that my whole attitude had changed. I felt lighter, almost cheery. I did not know why. Something had overtaken me… life, perhaps.
I finally figured out what had gone on: once I knew that I could kill myself if I wanted to, I’d felt in control. My life was in my own little crippled hands. The decision was mine to make now; the disease was no longer in charge of my life; I was. Just knowing that I was in control of my own destiny, even if that meant ending my life, had apparently made all the difference in my world.
The pain had not really gone away; it had just stepped aside for a few minutes, allowing me to do what had to be done but when it returned, I was ready for it in a whole different way. My life changed that day as I began to institute practices that would help me maintain a better state of mind: meditation, watching funny movies, self-awareness — things that allowed me to make changes that would make my life feel a little less painful.
It would be another year and a half before the symptoms started to disappear but they did, to everyone’s amazement. And the doctor’s pronouncements that even though the disease had gone away, my body would stay as it had been, turned out to have been incorrect. The only remnants of the disease are my crippled hands. If it were not for them, no one would ever believe what I’d gone through. I love them for that. They are my badge of honor and an open invitation for people to ask, “Is that arthritis?” and learn then about a disease they’ve may only ever have heard of in passing.
Since the day that my suicide plan self-destructed I have found a whole lot more than just seven reasons to live.
Postscript: the writing of this piece was inspired by the music of one of my favorite musicians: Amy Winehouse whose CD, Back to Black, is something I treasure and often listen to while painting, and her emotional pain was something with which I can resonated deeply.
