Stephen Hawking was a revolutionary scientist who made many discoveries about the intricacies of black hole mechanics and singularities. In addition to be an incredible scientist he was a sufferer of ALS. He was diagnosed with ALS at the age of 21 and proceeded to live a remarkable life. His dedication to his fellow man and his drive to succeed is an inspiration to us all, but especially to those suffering with a debilitating illness. We can learn a great deal from the way that Stephen Hawking lived his life, but first it is important to understand what exactly ALS is and life with ALS.
What is ALS
Amyotrophic lateral sclerosis (ALS) is a class of rare neurological diseases that impact the nerve cells which control voluntary muscle movement. This illness is also called Lou Gehrig’s disease after the baseball player who suffered with it in the 1930s. ALS impacts motor neurons which send messages from your brain to your spinal cord and cause muscles to move. As these become disabled by the disease, simple movements become impossible, and the body becomes paralyzed. While ALS does affect the brain, it does not impact cognitive function. People with ALS can think just like a person with a healthy body would.
What does the progression of also look like?
Early Stage ALS
Early ALS sufferers will usually experience muscle weakness, twitching, or stiffness. In this early stage the sufferer will typically experience muscle weakness or atrophy. Indications of ALS at this point typically impact one part of the body, such as the arms or legs. This can start to make activities of daily living very difficult. For example, those whose hands are impacted may have a very difficult time making clothes or buttoning clothes.
Middle Stage ALS
As ALS progresses all muscles under voluntary control will be affected. Muscles continue to atrophy so those affected lose their strength and the ability to speak, eat, move, and even breathe. Infrequently used muscles may become permanently shortened as well. Because of this, jointed limbs may no longer be able to fully straighten.
At this phase people will develop problems in walking, swallowing, and chewing food. Additionally, people may be unable to speak or breathe. During this period sufferers are still completely mentally competent and are fully aware of the painful changes occurring to their bodies.During this phase sufferers will likely require constant care.
Late Stage ALS
During the later phases of ALS the majority of voluntary muscle function is paralyzed. Even the muscles that control the mouth and throat will become paralyzed. Because of this eating, speaking, and breathing will likely become compromised so ventilators and feeding tubes are commonly used. Because of these difficulties, ALS sufferers will need 24 hour care.
Most people with ALS die from respiratory failure, usually within 3 to 5 years from when the symptoms first appear. However, ALS is not an immediate death sentence. 10% of people diagnosed will live for 10 or more years. Stephen Hawking, for example, lived for over 50 years with the disease.
What can we learn from Stephen Hawking about Living With ALS?
1. ALS is Not an Immediate Death Sentence
When Stephen Hawking was initially diagnosed with ALS at the age of 21 he was given 2 years to live. As we know, Stephen Hawking lived over 50 years with the disease passing away in 2018 at the age of 76. He was able to live a full life in the face of his debilitating illness. He was able to raise a family, enjoy a fulfilling career, and enjoy himself throughout his life.
Stephen Hawking attributes his long life to two things. First, the incredible care that he was able to receive thanks to the National Health Service (NHS) which afforded him caretakers and equipment to remain independent. Second, he maintained hope and a sense of humor through it all. If you or a loved one has been diagnosed with ALS, simply look to Stephen Hawking’s long and full life for inspiration.
2. You Can Still Make a Difference in the World
Despite his diagnosis Stephen Hawking made discoveries that changed the world of physics. When he was diagnosed at the age of 21 he expressed that he thought his life was over. While he was wrought with grief over his diagnosis he did persist and pursue knowledge. During his life he wrote over a dozen books on cosmology, physics, and his life. Additionally, he appeared in over 30 episodes of various television programs as himself. Beyond this he made progress in the fields of both cosmology and physics make such discoveries as “Hawking Radiation”. His life is a testament to human will power and the impact you can have on the world regardless of your circumstances.
3. Access to Proper Care is Critical
Stephen Hawking has always been an advocate for the funding of assistance for disabled people. He primarily was active in his nation of origin, the United Kingdom. When presenting, he made it abundantly clear to policy makers that without the assistance of the National Health Service (NHS) he would not have been alive long enough to make the progress he did in the field of physics. When he advocated he would ask policy makers how many incredible minds they would be condemning if they cut funding for the NHS.
After his death Stephen Hawking remains as a critical reminder that health care for the disabled is vitally important. This is not only important to the disabled and their loved ones, but to all of humanity as well.
4. Avoid Isolation and Embrace People
One thing that is notable about Stephen Hawking is his enthusiasm for life and connecting with others. Beyond his scientific career, he embraced life as an author and celebrity, establishing himself as a scientific role model. Despite the isolation that ALS can impose on a person, he did not allow it to separate him from humanity. A testament to this was his incredible sense of humor. Theoretical physicist, Jim Al-Khalili spoke on this saying “He was a fun-loving guy. Inside that shell, inside that body that was paralyzed, was someone who was full of vigor, full of passion for life.”
5. Never Give Up
It can be difficult to look at someone with Stephen Hawking’s resolve and relate to them. But he too felt depression at the onset of his diagnosis. “I felt it was very unfair – why should this happen to me,” he wrote in his 2013 memoir, “At the time, I thought my life was over and that I would never realize the potential I felt I had. But now, 50 years later, I can be quietly satisfied with my life.”
He went on to say this about hope, “It’s important not to become angry, no matter how difficult life is, because you can lose all hope if you can’t laugh at yourself and at life in general”