Long before the neurodegenerative disease ALS (amyotrophic lateral sclerosis) became more well-known thanks to the Ice Bucket Challenge, it was very much a part of physicist Stephen Hawking’s life. In fact, it was a significant challenge that Hawking lived with for more than 50 years, which is astounding given the debilitating nature of the disease and the fact it is usually fatal within five years of a diagnosis.
Getting the ALS Diagnosis
Hawking was just 21 and studying cosmology at the University of Cambridge when his father noticed he was tripping and falling frequently, so he sent his son to a medical clinic where he took a series of tests. Eventually the diagnosis came back—he had ALS, also known as Lou Gehrig’s disease, and doctors estimated he had two and half years left to live.
A type of motor neuron disease, ALS causes nerve cells in the brain and spinal cord to weaken and eventually die. When these motor neurons die, the brain can no longer control muscle movement and the body is paralyzed. Symptoms start as muscle twitching and weakness in the arms and legs and slight slurring of speech. Eventually, ALS affects the muscles needed to move, speak, eat, and breathe.
Gaining a New Perspective
The news was, of course, devastating, but Hawking derived hope from the fact that he still had some time left and he began to take new interest in his studies and his research. “I was bored with life before my illness,” he said. “There had not seemed to be anything worth doing.” His illness, as is the case with many major life obstacles, seems to have spurred him on to achievements he may not have reached otherwise as he now showed a new intensity for his work. Thinking he would die soon gave Hawking a new perspective on his life. “In fact,” Hawking has said, “although there was a cloud hanging over my future, I found, to my surprise, that I was enjoying life in the present more than before.”
Though extremely intelligent, Hawking ranked third from the bottom of his class in high school and tended to put only minimum time into his studies in college before his illness, despite graduating with honors from Oxford University at the age of 17.
Focusing on Abilities
After his diagnosis, Hawking began studying black holes and the origins of the universe. As his health diminished—he began using a wheelchair—his life and his research flourished. He married in 1965 and had three children, and his research received public recognition in 1974 when he demonstrated that black holes are not information vacuums as once thought, but they emit a stream of particles. His “Hawking Radiation” discovery provided essential information into how gravity relates to other forms of energy. His discovery and publications made him famous in the scientific community and eventually around the world. He was soon named a fellow of the Royal Society, earned the prominent Albert Einstein Award and received the Pius XI Gold Medal for Science from Pope Paul VI. His subsequent theories continue to further the world’s understanding of the universe.
His disease continued to progress, however, and by the mid-1970s he needed more care and his speech was so slurred only his family could understand him. But still he learned to manage and overcome the significant challenges of his condition. In 1985, Hawking had another health scare when he contracted pneumonia. He became so ill that his doctors put him into a drug-induced coma and asked his wife if she wanted to stop life support efforts. Instead she had him flown back to Cambridge where he received a tracheotomy, which left him without the ability to speak at all. “The weeks of intensive care that followed were the darkest of my life,” Stephen admits in a new film about his life.
He did make a full recovery however, allowing him to finish writing A Brief History of Time, which sold 10 million copies around the world. Although he continues to defy the odds living with ALS for so long, his condition is always challenging as he needs 24-hour care and can communicate only with the aid of a computer device, which he operates using the remaining muscles he still controls in his cheek. “For the last three years I have been on full-time ventilation,” Hawking recently told 200 delegates at the European Global Tracheostomy Collaborative in London, “but this has not prevented me from leading a full and active life.”
Benefiting from a Positive Outlook
From the time he was diagnosed, Hawking did not let his condition stop him from achieving his goals. “I am quite often asked: ‘How do you feel about having ALS?’ The answer is, not a lot,” Hawking said. “I try to lead as normal a life as possible, and not think about my condition, or regret the things it prevents me from doing, which are not that many.” Although it would be easy to think about what this disease has cost him, Hawking chose to focus on all that he still has. His brilliant mind remained unaffected by ALS, so he could continue to enjoy the benefits of that. Hawking had 12 honorary degrees and he received multiple awards, medals and prizes. He has even appeared on a number of television shows, including Star Trek: The Next Generation, The Simpsons, and The Big Bang Theory. There have been documentaries about his life and a film called The Theory of Everything. He also co-authored a children’s book with his daughter called George’s Secret Key to the Universe to educate young children about the universe and black holes.
It is not known why Hawking defied the odds and lived with this deadly disease for so long, though the fact he contracted ALS at such a young age is thought to contribute to his ability to survive longer than those diagnosed over the age of 50. Generally, fewer than 10 percent of ALS sufferers live longer than ten years, however. “I have been lucky that my condition has progressed more slowly than is often the case,” Hawking said. “But it shows that one need not lose hope.”
Hawking’s life story serves as an inspiration to children and adults, especially those who are struggling with a chronic or serious illness. His lessons of positive thinking, focusing on what can be accomplished, taking advantage of the time provided, and ignoring the difficulties, can be taught in all areas of life.
This post was updated in 2018.