When Stephen Hawking was diagnosed with motor neurone disease (ALS) at the age of 21, he was told he had two years left to live. Astoundingly, he lived another 55 years with this disease. Average life expectancy with ALS is 3 years. About 20 percent of people live five years after their diagnosis, 10 percent live ten years after, and 5 percent live twenty years or more.
How did Hawking live so long with ALS? This disease typically strikes between the ages of 40-70. Some physicians theorize that Hawking’s younger onset might reflect a version of the disease that proceeds more slowly and plateaus.
Yet, his ALS did proceed. The motor neurons that fed his voluntary muscles degenerated. He lost the ability to walk, type, chew, swallow, speak, and eventually breathe. Without a trachestomy, invasive mechanical ventilation, and 24/7 life support, he would’ve died of respiratory failure 33 years ago.
Invasive ventilation can, in theory, allow someone with ALS to achieve an unabbreviated lifespan, but living on a vent is typically fraught with difficulties that make a long life improbable. Mucus accumulates and regularly forms a plug that blocks the airway and needs to be vigilantly detected and suctioned else the patient will suffocate. Pneumonia, bed sores, infections, and human error are persistent threats. Life on a ventilator must be constantly monitored and tended to, and so, unless a family member like Stephen’s first wife, Jane Wilde, has devoted her or his life to this role, it is expensive, costing $200-400,000 per year in private care. Only 7% of people with ALS choose to go on invasive ventilation, and of those, very few live as long as Stephen Hawking.
So aside from the possibility of slow-moving neurodegeneration and top-notch care, what kept him going for 55 years? I think it had something to do with the will to live a meaningful life.
Most people with ALS become prisoners in their paralyzed bodies, only able to participate in life as passive passengers. A life of adventure, productivity, and inspired purpose is not easily imaginable or achievable.
But Stephen Hawking didn’t need his body. He flourished in his mind. I touch on this in my new novel, Every Note Played, in which the main character is a concert pianist with ALS:
Stephen Hawking is a theoretical physicist and a genius. He can live in the realm of his mind. Richard can’t. He looks down at his dangling hands. His world, his fascination, his reason, was the piano. If he were a brilliant theoretical physicist with ALS, he might hope for thirty more years. As a pianist with ALS, he’s not buying any new calendars.
75% of people with ALS remain intellectually intact. A quarter develop symptoms of frontotemporal lobe dementia. Here, Hawking caught a break. He trained his mind to think without the use of pen and paper, chalk and board.
He did the mathematical equations that led to his discovery of Hawking radiation in his head. In his quest to find a single complete theory that would explain the beginning and the laws of universe, he contributed to ideas, conversations, and advancements in thought on the singularity theorem, black holes, wormholes, baby universes, and more. His extraordinary imagination, curiosity, and brilliance were unaffected by the ravages of ALS, and he found great meaning in living, leaving his mark in space and time far beyond the confines of his wheelchair.