Hal Finney is not a household name, although he is a Name in one of the communities I have inhabited, the crypto/cypherpunk community.
Now, it transpires, Hal is not just a very smart guy, he is a pretty heroic guy. In Less Wrong: Dying Outside, he writes movingly and bravely about his recent diagnosis with Lou Gehrig's disease (AKA Amyotrophic Lateral Sclerosis or ALS). That is what Steven Hawking has, and it leaves you paralyzed, unable even to breath without mechanical assistance.
Patients lose the ability to talk, walk, move, eventually even to breathe, which is usually the end of life. This process generally takes about 2 to 5 years.
There are however two bright spots in this picture. The first is that ALS normally does not affect higher brain functions. I will retain my abilities to think and reason as usual. Even as my body is dying outside, I will remain alive inside.
The second relates to survival. Although ALS is generally described as a fatal disease, this is not quite true. It is only mostly fatal. When breathing begins to fail, ALS patients must make a choice. They have the option to either go onto invasive mechanical respiration, which involves a tracheotomy and breathing machine, or they can die in comfort. I was very surprised to learn that over 90% of ALS patients choose to die.
Hal is planning on joining the 10%. And to make the best of it. How many people could write, sincerely, as he does in response to comments on his original announcement,
Everybody with ALS talks about how terrible it is, all the things you can't do any more. But nobody seems to notice that there are all these things you get to do that you've never done before. I've never used a power wheelchair. I've never controlled a computer with my eyes. I've never had a voice synthesizer trained to mimic my natural voice. If I told people on the ALS forums that I was looking forward to some of this, they'd think I was crazy. Maybe people here will understand.
I understand, but I don't know that I have it in me to be so brave.
