vulnerability

probably one of the greatest books on vulnerability i've read is His Brother's Keeper by jonathan weiner. it's about stephen who has lou gherig's disease (amyotrophic lateral sclerosis or als) and his brother jamie who takes his every passion and puts it into developing a foundation that will raise money for research of a cure for als. his goal is to cure als, and weiner does an excellent job at describing the scientific and economic venture that ensues, but he mixes it with jamie's personal goal: saving stephen.

a passage i'd like to share comes from weiner's own interaction with stephen:
It was painful to watch him strain. I wanted to turn polietely away, but if I did then I could not understand what he said. I had to keep my eyes locked on his and watch him carefully. This forced me to face what he was facing and hear what he was saying, and he was putting all he had into saying it. [. . .]
Stephen was as sensitive and observant as ever, concerned about everyone around him. He often thought his disease was harder on others than it was on himself. (p 345)

weiner continues on p 346: His illness was a normal accident, and he refuesed to mythologize it.

i do not have als. i do not have a life-threatening disease. my muscles are not wasting away. though i do not know what my illness is, it's fairly certain i will not die from it. i have learned to live with the uncertainty of it as well as living with a level of vulnerability. i have tried to hide my vulnerability as much as possible lately. however, i was paralyzed at community group last night, and it was extremely awkward for me. perhaps i needed a reminder that i am not in control. what has been more painful for me from the beginning has been watching those around me feel so helpless. i like the part about stephen's illness being 'a normal accident'. in learning to live with my 'new' body, have i reduced the entire mystery of my illness to a simple brush-off, thereby actually making others helpless when they ask me if i need anything when i am physically vulnerable?