A life in code
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How one software developer plans to continue programming despite being diagnosed with Lou Gehrig’s disease
Hal Finney is a software developer best known for his work on the open source cryptography system PGP. Sadly, he was recently diagnosed with Amyotrophic Lateral Sclerosis (also known as Lou Gehrig’s disease), a neurodegenerative disease that is in most cases fatal.
Most cases, that is, but not all.
“When breathing begins to fail, ALS patients must make a choice,” Finney recently wrote on a blog. “They have the option to either go onto invasive mechanical respiration, which involves a tracheotomy and a breathing machine, or they can die in comfort. I was very surprised to learn that over 90% of ALS patients choose to die.”
“With mechanical respiration, survival with ALS can be indefinitely extended,” he added, and this is what Finney plans to do, using technology to live life to the fullest even as his body deteriorates.
“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,” he writes. “I hope to be able to read, browse the net and even participate in conversations by email and messaging.
That, Finney hopes, will be enough to allow him to pursue his principal passion. “My dream is to contribute to open source software projects even from within an immobile body,” he writes. “That will be a life very much worth living.”
