Iam quite often asked: How do you feel about having ALS注1? 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.

I had never been very well coordinated[协调] physically as a child. I was not good at ball games, and my handwriting was the despair[失望] 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[划艇时做舵手] and rowing[划船]. 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[笨拙的], and I fell over once or twice for no apparent[明显的] 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[专门医师], 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. After all that, the doctors didn't tell me what I had. I gathered that they expected it to continue to get worse, and that there was nothing they could do, except give me vitamins[维生素]. I could see that they didn't expect them to have much effect.

The realisation that I had an incurable[不可治愈的] 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[夭折] like this? However, while I had been in hospital, I had seen a boy I vaguely[有点] knew die of leukaemia[白血病], 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.

Before my condition had been diagnosed[诊断], 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[处死]. I suddenly realised that there were a lot of worthwhile[值得做的] things I could do if I were reprieved[缓刑]. 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[和某人订婚] 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.

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. This lasted until I caught pneumonia[肺炎] in 1985. I had to have a tracheotomy[气管切开术] operation. After this, I had to have 24 hour nursing care.

Before the operation, my speech had been getting more slurred[含糊的], 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[发表会] through an interpreter[翻译], 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[更不必说] write a scientific paper. However, a computer expert in California, called Walt Woltosz, sent me a computer program called Equalizer. This allowed me to select words from a series of menus on the screen, by pressing a switch[开关] 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[合成器]. At first, I just ran the program on a desk-top computer. Then David Mason of Cambridge Adaptive Communication fitted a small portable computer[便携式电脑] and a speech synthesizer to my wheelchair. This system allowed me to communicate much better than I could before. 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. This synthesiser is by far the best I have heard, because it varies the intonation, and doesn't speak like a Dalek注2. The only trouble is that it gives me an American accent[口音].
　　I have had motor neurone[神经元] 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.
　　经常有人问我：患上ALS是怎样一种感觉？答案是：没什么大不了的。我尽可能试着像正常人一样过日子，不会为自己的病况忧心忡忡，不会为自己因病不能做的事情而遗憾不已—实际上这类事情并不多。
　　我身体的协调性自幼就不太好。我不擅长打球，书写也糟糕得让老师们失望至极。或许正是这个原因，我不怎么喜欢体育锻炼。但是在我17岁考入牛津大学之后，情况似乎发生了变化。我开始参加划艇。虽然算不上划船高手，但我也达到了参加校际比赛的水平。
　　然而在我就读牛津的第三年，我发现自己好像变得越来越笨拙了，还无缘无故地跌倒了几次。但直到我在随后一年入读剑桥时，我爸爸才注意到这个问题，并且带我去看家庭医生。他推荐我去找这方面的专家，于是刚过完21岁生日不久，我便入院接受检查。我在那里呆了两个星期，期间进行了很多测试。那之后，医生还是没有说我到底得了什么病。我想他们认为我的病况会越来越严重，他们也无能为力，唯一能做的事情就是给我开维生素，但我知道他们自己也不认为药物会对我有多大帮助。
　　得知自己患上一种几年内可能致命的不治之症，我感到有点震惊。这种事情怎么可能会发生在我身上？我为什么会英年早逝？但在住院期间，我看着自己认识的睡对面床的那个男孩死于白血病，那并不是什么赏心悦目的景象。显然，有不少人比我更不幸，至少我的病还不会让我觉得太难受。
　　在病情确诊之前，我对生命感到非常厌倦，似乎已经找不到什么值得做的事情。但就在我出院后不久，我梦见自己将要被处决。我突然意识到，如果我能获得缓刑，我还有很多有意义的事情要做。另一个梦我也做过几次，在梦里，我牺牲自己去拯救他人。毕竟，如果无论如何我都会死的话，这也算做了件好事。但我并没死。事实上，尽管总有阴霾笼罩着我的未来，我还是惊奇地发现，如今的自己比过去更加享受生活。我在研究上逐渐取得进步，还跟一位名叫简·王尔德的女孩订了婚—我在自己的病情刚被确诊时认识了她。这改变了我的人生，它给了我一个活下去的理由。
　　直到1974年，我还能自己吃饭以及上下床。在没有外界帮助的情况下，简一边设法帮我，一边把孩子们养大。然而，我的情况逐渐恶化，于是我们让我的一个研究学生跟我们一起住。这种情形一直持续到1985年我患上肺炎为止，当时我必须做气管切开手术。此后，我必须接受24小时看护。
　　手术之前，我演讲时的声音已经变得越来越含糊，所以只有少数几个非常了解我的人知道我在说什么—但是至少我还能够与人沟通。我通过向秘书口述来写科学论文，召开研讨会时则通过译员把我的话复述得更加清晰。但是，那次气管切开手术使我完全丧失了说话的能力。有一段时间，我和人交流的唯一方式就是把字母一个个地拼出来—当别人在拼写卡片上指出正确的字母时，我就会挑一挑眉示意。要那样进行一次交谈已经非常辛苦，更不要说写一篇科学论文。但加利福尼亚州的一位电脑专家瓦特·沃尔托兹给我寄来了一个名为“均衡器”的程序，让我能够通过按着手里的开关从屏幕上的一系列菜单中选择词语。这个程序也可以让我通过头部或眼部运动来操控开关。当我写完自己想说的内容，便可以把文件发送给语言合成器。一开始，我只是用台式电脑来操作这个程序。后来，剑桥大学适配通信系的大卫·梅森给我的轮椅装上了小型移动电脑和语音合成器。这个系统让我与人沟通起来比以前要容易得多。通过这个系统，我出了一本书，发表了几十篇论文。我还进行了多场科学报告和大众演说，都取得了良好的效果。这部语音合成器是我迄今为止听过最好的一部，因为它有不同的语调，发音听起来也不像机器人戴立克，但唯一的问题是它让我听起来一口美国腔。
　　自从长大之后，运动神经元疾病几乎一直伴随着我。尽管如此，我还是组建了一个非常幸福的家庭，并且在工作上获得成功。这要多亏我从简、我的子女以及其他许许多多的人和机构的帮助。我非常幸运，因为我的病情发展速度比常见病例要慢。事实证明，一个人绝不能失去希望。