Creative Destruction

Dying Outside

Tonight I just learned through the grapevine that Hal Finney has ALS. He is approaching the disease with a very courageous and powerful outlook:

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. And even among those who choose life, for the great majority this is an emergency decision made in the hospital during a medical respiratory crisis. In a few cases the patient will have made his wishes known in advance, but most of the time the procedure is done as part of the medical management of the situation, and then the ALS patient either lives with it or asks to have the machine disconnected so he can die. Probably fewer than 1% of ALS patients arrange to go onto ventilation when they are still in relatively good health, even though this provides the best odds for a successful transition.

With mechanical respiration, survival with ALS can be indefinitely extended. And the great majority of people living on respirators say that their quality of life is good and they are happy with their decision. (There may be a selection effect here.) It seems, then, that calling ALS a fatal disease is an oversimplification. ALS takes away your body, but it does not take away your mind, and if you are determined and fortunate, it does not have to take away your life.

[. . .]

I hope that when the time comes, I will choose life. ALS kills only motor neurons, which carry signals to the muscles. The senses are intact. And most patients retain at least some vestige of control over a few muscles, which with modern technology can offer a surprisingly effective mode of communication. Stephen Hawking, the world’s longest surviving ALS patient at over 40 years since diagnosis, is said to be able to type at ten words per minute by twitching a cheek muscle. I hope to be able to read, browse the net, and even participate in conversations by email and messaging. Voice synthesizers allow local communications, and I am making use of a free service for ALS patients which will create a synthetic model of my own natural voice, for future use. I may even still be able to write code, and my dream is to contribute to open source software projects even from within an immobile body. That will be a life very much worth living.

Hal was one of the people who inspired me in the early days of cypherpunks to get out there and write code and implement it, and get it running. He was a remailer pioneer, which inspired me to start my privacy-enhanced Internet service. Words cannot express the debt I owe to Hal Finney.

Hal continues to be an inspiration, as he chooses life. His brain will continue to function, and I expect he’ll continue to add value to the world, even as his body ceases to operate.