Stephen Hawking’s Story

Amazing article by Stephen Hawking about his journey with ALS/MND

Very well written and I recommend reading it all but here’s a quick summary if you don’t have time:

  • Tells us about his symptoms
  • His tests
  • His diagnosis
  • How he coped financially
  • His wife
  • Problems he encountered due to ALS

And he finishes by saying: But it shows that  one need not lose hope

 

Full Article

I am quite 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, which are not that many.

It was a great shock to me to discover that I had motor neurone disease. I had never been very well co-ordinated physically as a child. I was not good at ball games, and my  handwriting was the despair of my teachers. Maybe for this reason, I didn’t care  much for sport or physical activities. But things seemed to change when I went  to Oxford, at the age of 17. I took up coxing and rowing. I was not Boat Race  standard, but I got by at the level of inter-College competition.

In my  third year at Oxford, however, I noticed that I seemed to be getting more  clumsy, and I fell over once or twice for no apparent reason. But it was not  until I was at Cambridge, in the following year, that my father noticed, and  took me to the family doctor. He referred me to a specialist, and shortly after  my 21st birthday, I went into hospital for tests. I was in for two weeks, during  which I had a wide variety of tests. They took a muscle sample from my arm,  stuck electrodes into me, and injected some radio opaque fluid into my spine,  and watched it going up and down with x-rays, as they tilted the bed. After all  that, they didn’t tell me what I had, except that it was not multiple sclerosis,  and that I was an a-typical case. I gathered, however, that they expected it to  continue to get worse, and that there was nothing they could do, except give me  vitamins. I could see that they didn’t expect them to have much effect. I didn’t feel like asking for more details, because they were obviously bad.

The realisation that I had an incurable disease, that was likely to kill me in a few  years, was a bit of a shock. How could something like that happen to me? Why  should I be cut off like this? However, while I had been in hospital, I had seen  a boy I vaguely knew die of leukaemia, in the bed opposite me. It had not been a  pretty sight. Clearly there were people who were worse off than me. At least my  condition didn’t make me feel sick. Whenever I feel inclined to be sorry for  myself I remember that boy.

Not knowing what was going to happen to me,  or how rapidly the disease would progress, I was at a loose end. The doctors  told me to go back to Cambridge and carry on with the research I had just  started in general relativity and cosmology. But I was not making much progress,  because I didn’t have much mathematical background. And, anyway, I might not  live long enough to finish my PhD. I felt somewhat of a tragic character. I took  to listening to Wagner, but reports in magazine articles that I drank heavily  are an exaggeration. The trouble is once one article said it, other articles  copied it, because it made a good story. People believe that anything that has  appeared in print so many times must be true. My dreams at that time  were rather disturbed. Before my condition had been diagnosed, I had been very  bored with life. There had not seemed to be anything worth doing. But shortly  after I came out of hospital, I dreamt that I was going to be executed. I  suddenly realised that there were a lot of worthwhile things I could do if I  were reprieved. Another dream, that I had several times, was that I would  sacrifice my life to save others. After all, if I were going to die anyway, it  might as well do some good. But I didn’t die. In fact, although there was a  cloud hanging over my future, I found, to my surprise, that 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, whom I had met just about the time my   condition was diagnosed. 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 Gonville and Caius  (pronounced Keys) college, Cambridge. To my great surprise, I got a fellowship,  and we got married a few months later.

The fellowship at Caius 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 that my disability got worse. This meant  that people were prepared to offer me a sequence of positions in which I only  had to do research, without having to lecture. We were also fortunate in  housing. When we were married, Jane was still an undergraduate at Westfield  College in London, so she had to go up to London during the week. This meant  that we had to find somewhere I could manage on my own, and which was central,  because I could not walk far. I asked the College if they could help, but was  told by the then Bursar: it is College policy not to help Fellows with housing.  We therefore put our name down to rent one of a group of new flats that were being built in the market place. (Years later, I discovered that those flats  were actually owned by the College, but they didn’t tell me that.) However, when we returned to Cambridge from a visit to America after the marriage, we found  that the flats were not ready. As a great concession, the Bursar said we could  have a room in a hostel for graduate students. He said, “We normally charge 12 shillings and 6 pence a night for this room. However, as there will be two of you in the room, we will charge 25 shillings.” We stayed there only three nights. Then we found a small house about 100 yards from my university department. It belonged to another College, who had let it to one of its fellows. However he had moved out to a house he had bought in the suburbs. He  sub-let the house to us for the remaining three months of his lease. During those three months, we found that another house in the same road was standing  empty. A neighbour summoned the owner from Dorset, and told her that it was a scandal that her house should be empty, when young people were looking for  accommodation. So she let the house to us. After we had lived there for a few  years, we wanted to buy the house, and do it up. So we asked my College for a  mortgage. However, the College did a survey, and decided it was not a good risk.  In the end we got a mortgage from a building society, and my parents gave us the  money to do it up. We lived there for another four years, but it became too  difficult for me to manage the stairs. By this time, the College appreciated me  rather more, and there was a different Bursar. They therefore offered us a  ground floor flat in a house that they owned. This suited me very well, because  it had large rooms and wide doors. It was sufficiently central that I could get  to my University department, or the College, in my electric wheel chair. It was  also nice for our three children, because it was surrounded by garden, which was  looked after by the College gardeners.

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, so we took to having one of my research students living with us. In return for free accommodation, and a lot of my attention, they helped me get up and go to bed.  In 1980, we changed to a system of community and 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 tracheotomy operation. After this, I had to have 24 hour nursing care. This was made possible by grants from several foundations.

Before the operation, my speech had been getting more slurred, so that only a few people who knew me well, could understand me. But at least I could  communicate. I wrote scientific papers by dictating to a secretary, and I gave seminars through an interpreter, who repeated my words more clearly. However, the tracheotomy operation removed my ability to speak altogether. For a time, the only way I could communicate was to spell out words letter by letter, by raising my eyebrows when someone pointed to the right letter on a spelling card.  It is pretty difficult to carry on a conversation like that, let alone write a  scientific paper. However, a computer expert in California, called Walt Woltosz,  heard of my plight. He sent me a computer program he had written, called  Equalizer. This allowed me to select words from a series of menus on the screen, by pressing a switch in my hand. The program could also 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. At first, I just ran the Equalizer  program on a desk top computer. However David Mason, of Cambridge Adaptive  Communication, fitted a small portable computer and a speech synthesizer to my  wheel chair. This system allowed me to communicate much better than I could  before. I can manage up to 15 words a minute. I can either speak what I have  written, or save it to disk. I can then print it out, or call it back and speak  it sentence by sentence. Using this system, I have written a book, and dozens of  scientific papers. I have also given many scientific and popular talks. They  have all been well received. I think that is in a large part due to the quality  of the speech synthesiser, which is made by Speech Plus. One’s voice is very  important. If you have a slurred voice, people are likely to treat you as  mentally deficient: Does he take sugar? This synthesiser  is by far the best I  have heard, because it varies the intonation, and doesn’t  speak like a Dalek.  The only trouble is that it gives me an American accent.

I have had  motor neurone disease for practically all my adult life. Yet  it has not  prevented me from having a very attractive family, and being  successful in my  work. This is thanks to the help I have received from Jane, my children, and a  large number of other people and organisations. 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.

Stephen Hawking

Taken From: http://www.hawking.org.uk/living-with-als.html

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