My father has late-stage Lou Gehrig's disease. Actually, he's technically not my father since my stepfather legally became my father in an adult adoption a few years ago. But Stephen was my father for the first two years of my life, and I look a lot like him. One reason we moved from Connecticut to California was to be near him at the end of his life.
When he was first diagnosed with ALS about two and a half years ago, the only symptoms were some trouble walking and difficulty holding things. The doctors gave him only a few months to live before his lungs succumbed to the disease and stopped working.
In the beginning, I said, “Welcome to my world,” a lot, if only in my head, because many of his problems were similar to my Multiple Sclerosis. He stumbled; I stumbled. He dropped things; I dropped things. Etc. But since then I've stayed the same, probably due to the interferon medicine I've been taking since the onset of my MS. Meanwhile his ALS has marched inexorably on, as it always does.
He always was a very active man, so I can only guess that having this particular disease is doubly difficult for him. He does, however, credit his decades of surfing and running with prolonging his life far beyond the few months the doctors expected.We've seen him gradually lose the ability to walk, talk, feed himself and even use the computer. Now he's limited to being able to turn his head slightly and use his fingers in a very small range of motion.
The computer has kept him connected with other people and the world. There was a gap of time in between the loss of most of his fine motor ability and gaining an assistive computer that has a clickable keyboard on screen during which he could not even type his own emails. That was a rough period for him, as he already had lost the power of speech and was relying on email to communicate a great deal of the time.
I visit him as often as I can, on the Sausalito houseboat that he built virtually from the hull up. He has hospice care, so he's rarely in the nursing home. We communicate by the use of a laser pointer strapped to his eyeglasses and a chart on the wall that lists the alphabet and common words and word endings. It's emotionally difficult for me to visit him, but I think about how much harder it is for him and for my stepmother and half-brother.
I remember, about a year ago, coming back from our first visit to the houseboat since moving to California, I was depressed. (Not the clinical kind, but the temporary kind.) Stephen no longer could speak, not even in a whisper. His loss of the ability to communicate was a blow.
As we were walking down the dock to the parking lot, my husband and I had that conversation you always have when you find out that someone you know has a terminal disease.
“God, that's a terrible way to go,” he said.
“I know, “ I answered.
“How terrible to have your body betray you like that bit by bit,” he said.
I replied, “Well, at least he still has all his mental faculties, and will have them until the end.”
“But I wouldn't want to know what was happening if that was me,” my husband said. “I'd rather just be out of it.”
I was taken aback. I always assumed that my husband, with his active mind, would feel the same way I did about any kind of mental deterioration. But it turns out that while one of my greatest fears is Alzheimer's Disease, his is any kind of disease that removes your ability to walk, talk and hold utensils.
I thought for a while about the difference in our outlooks. We both have very active minds. Granted, he said that his stint as a lifeguard when he was a teenager at a beach for handicapped people had an impact on him. Multiple Sclerosis was always one of his fears. I, on the other hand, was so calm during my MS diagnosis that a nurse corralled him in the hall and asked, “Is she all right? She's taking this too well.”
But here's the thing – after suffering from major depression, I am not frightened by anything that attacks my body, as long as it isn't terminal, of course. I'm not sure how I would handle that. But my mind betrayed me when I was depressed, and it's much harder to separate yourself from that than from a physical disability. I never, ever want to go back to that place where I wasn't in control of my mind. It may be hard to believe if you haven't been depressed, but after that, handling my Multiple Sclerosis diagnosis was a piece of cake.
I don't know how Stephen would have preferred to die, by losing his mind or his body. We never had that conversation before his diagnosis, and it seemed irrelevant to have it afterward. I hope, like me, he would rather end his life this way, with his mind intact, than by losing it.
Published On: April 02, 2007