Unit 18
Disability -- My Experience with ALS
I am Stephen Hawking. People often asked: How do you feel about having ALS? The answer is, not a lot. I try to lead as normal a life as possible, and not think about my condition, or regret the things it prevents me from doing.
As a child I had never been good at ball games, and my handwriting was the despair of my teachers. In my third year at Oxford, I seemed to be getting more clumsy, and I fell over once or twice for no apparent reason. My family doctor referred me to a specialist.
The realization that I had an incurable motor neuron disease was a bit of a shock. Not knowing how rapidly the disease would progress, I was at a loss. The doctors told me to carry on with the research I had just started in general relativity and cosmology. After all, if I were going to die anyway, I might as well do some good. But I didn't die. In fact, although there was a cloud hanging over my future, I was enjoying life in the present more than before. I began to make progress with my research, and I got engaged to a girl called Jane Wilde. That engagement changed my life. It gave me something to live for. But it also meant that I had to get a job if we were to get married. I therefore applied for a research fellowship at Cambridge. To my great surprise, I got a fellowship, and we got married a few months later.
The fellowship took care of my immediate employment problem. I was lucky to have chosen to work in theoretical physics, because that was one of the few areas in which my condition would not be a serious handicap. And I was fortunate that my scientific reputation increased, at the same time my disability got worse. Up to 1974, I was able to feed myself, and get in and out of bed. Jane managed to help me, and bring up the children, without outside help. However, things were getting more difficult. In 1980, we changed to a system of private nurses, who came in for an hour or two in the morning and evening. This lasted until I caught pneumonia in 1985. I had to have a tracheostomy operation. Before the operation, my speech had been getting more slurred, so that only a few people could understand me. However, the operation removed my ability to speak altogether. A computer expert in California heard of my trouble and sent me a computer program he had written. The program could be controlled by a switch, operated by head or eye movement. When I have built up what I want to say, I can send it to a speech synthesizer. This synthesizer is by far the best I have heard, because it varies the intonation. The only trouble is that it gives me an American accent. However, the company is working on a British version.
I have had ALS for practically all my adult life. Yet it has not prevented me from having a good family, and being successful in my work, thanks to the help I have received from Jane, my children, and a large number of other people. I have been lucky, that my condition has progressed more slowly than is often the case. But it shows that one need not lose hope. |