For a very long time, I dreamed of being cured. I was born in 1981. I learned to walk early enough, but I stumbled(踉跄，绊倒) and fell more easily than other children. My parents began to worry that something was wrong, that my muscles were weaker than they should be. Eventually, at the age of three, I was diagnosed with a form of spinal muscular atrophy (SMA). In the 1980s, the precise mechanics were not yet understood, but the condition was known to be hereditary, probably linked to a recessive gene.(20世纪80年代，人们还不清楚这种病的确切机制，但已知它具有遗传性，很可能与一种隐性基因有关。) It was also known to be progressive(进行性的，逐渐加重的). As I aged, my muscles would not keep pace(跟上步伐). At eight, I began to use a wheelchair for longer distances. By the time I was 18, I rarely walked outdoors any more.
很长一段时间里，我都梦想着能被治愈。我生于1981年。我学会走路还算早，但比别的孩子更容易踉跄摔倒。父母开始担心我有什么问题，担心我的肌肉比应有的状态更弱。最终，三岁那年，我被诊断出患有某种脊髓性肌萎缩症（SMA）。20世纪80年代，人们还不清楚这种病的确切机制，但已知它具有遗传性，很可能与一种隐性基因有关。人们也知道它会逐渐加重。随着年龄增长，我的肌肉跟不上身体的需要。八岁时，我开始在走较远距离时使用轮椅。到18岁时，我已经很少在户外走路了。
It is hard to be young and to know that you are growing weaker rather than stronger. I had all the same aspirations(抱负，志向) that my nondisabled friends did, but I lived in fear of(生活在对……的恐惧中) the future in a way they did not. I spent a lot of time thinking about what my life would have been like if I didn’t have SMA.(我花了很多时间去想，如果我没有SMA，我的人生会是什么样。) The images in my head were of something like a double: myself, only rid of this one deficit(缺陷，不足), imprecisely defined, but encoded(编码的) somewhere in my body.
年纪轻轻就知道自己正在变得越来越弱而不是越来越强，这很难受。我和我那些健全的朋友有着同样的抱负，但我对未来怀着一种他们不曾有过的恐惧。我花了很多时间去想，如果我没有SMA，我的人生会是什么样。我脑海中的画面像是一个分身：还是我自己，只是去掉了这一个缺陷，轮廓模糊，却编码在我身体的某个地方。
In the 1990s, the human genome(基因组) began to be mapped. Medical genetics grew ever more precise. I was vaguely(隐约地，模糊地) aware of this, of the fact that genetic conditions such as mine were being better understood with every year(一年又一年，逐年). With that understanding came the possibility, however faint, that there might be some form of treatment for me beyond the interminable hours of painful, barely-worth-it physical therapy I took after school.(伴随这种理解而来的，是一种可能性——尽管极其微弱——即除了放学后那些没完没了、痛苦又几乎不值得的物理治疗之外，也许还会有某种形式的治疗适合我。)
20世纪90年代，人类基因组开始被绘制。医学遗传学变得越来越精确。我隐约意识到这一点，意识到像我所患的这种遗传病每年都在被更好地理解。伴随这种理解而来的，是一种可能性——尽管极其微弱——即除了放学后那些没完没了、痛苦又几乎不值得的物理治疗之外，也许还会有某种形式的治疗适合我。
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