Stephen Hawking did indeed have ALS. When the diagnosis was made in 1963 at a hospital in London, he was twenty-one years old. The prognosis was straightforward: two years, possibly less. He would go on to live with the illness for fifty-five years, a period of time so dissimilar from the typical course of amyotrophic lateral sclerosis that experts in the field are still perplexed.
The nerve cells that regulate voluntary muscle movement are attacked by ALS, which is sometimes referred to as Lou Gehrig’s disease in the US. Usually, it moves along quickly. Only roughly 10% of patients survive for more than ten years after diagnosis, with the majority surviving for two to five years. Hawking did more than simply outperform those figures. In a manner that scientists are still unable to fully comprehend, he destroyed them.
Looking back at his early years at Cambridge, it’s remarkable how nearly the illness ended everything before it started. When the diagnosis came, he had just begun his doctoral studies under Dennis Sciama. According to his own account, he fell into such a deep depression that completing his PhD seemed futile. A young man who had been “bored” at Oxford suddenly facing his own mortality in his early twenties, long before most people give it much thought, has an almost cinematic quality to that time.
The illness did not progress as the doctors had anticipated. Instead of progressing steadily as is usually the case with ALS, it did so slowly and in fits and starts. He was no longer able to walk without assistance. His speech declined until, by the middle of the 1980s, a pneumonia episode and an urgent tracheotomy completely eliminated it. After that, he was dependent on a speech-generating device that was initially controlled by a handheld switch and, as his condition worsened, by a single cheek muscle, which was the only voluntary movement he had left in his last years.
It’s important to focus on that particular detail because it’s simple to reduce Hawking’s story to a triumphant fable and ignore how physically terrible the illness truly was. He wasn’t merely “living with” ALS in a vague way. For the majority of his adult life, he was confined to a wheelchair, required 24-hour care, and spoke at a fraction of normal speed even with the best technology. The fact that he wrote A Brief History of Time, a book that spent 237 weeks on the Sunday Times bestseller list, under those circumstances says more about the man’s unwavering stubbornness than it does about the disease’s mildness.
Over the years, medical professionals and ALS researchers have proposed explanations for his exceptional longevity, but none of them provide a conclusive solution. Some have attributed his case’s early onset to the fact that ALS can sometimes progress more slowly in younger patients than in those in their fifties or sixties. Others point out that his unique pattern of weakness, which began in his limbs rather than his breathing or swallowing muscles first, might have given him an advantage over other patients. It’s also possible—though impossible to prove—that the exceptional care he received for decades at Cambridge had an impact that most patients are never able to.
Hawking, who demonstrated that a body in decline does not always imply a mind in decline, has been cited by the ALS Association as a kind of north star for recently diagnosed patients rather than as a medical anomaly. Late in life, Hawking himself seemed to lean toward that framing, encouraging people to concentrate on what was still possible rather than what had been lost.
In the same Cambridge home where he had completed much of his later work, he passed away in March 2018 at the age of 76. It hasn’t been repeated since, and ALS experts continue to characterize his case as one of the most unusual on record, regardless of the biological and environmental factors that allowed him to outlive his diagnosis by fifty years.
