STEPHEN HAWKING SPEAKS ABOUT HIS LIFE WITH A.L.S.
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
For more information on Motor Neurone Disease and Amyotrophic Lateral Sclerosis,
as well as other progressive conditions, please follow one of the links below:
The Motor Neurone Disease Association (UK)
International Alliance of ALS/MND Associations on the internet
There is also a helpline on 0345 626262 (Monday to Friday 9.00 - 22.30, calls
charged at local rate within the UK).
