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.
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Stephen Hawking
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