For a man whose passion involved solving the mysteries of the universe, Stephen Hawking remained a mystery to many. First and foremost he was a British physicist, earning accolades and respect for his many contributions to science. Secondly, as a person living with ALS, his fame came from simply living a long life of more than 50 years with a disease better known for cutting lives short.
As the announcements of Stephen Hawking’s recent death on March 14, 2018 circled the globe, I noticed familiar criticisms following in their wake. These comments didn’t come from the scientific community, where his opinions certainly pushed accepted theory and thought, but from members of our own ALS community!
Even though medical experts still can’t explain the reason for Hawking’s longevity, questions circulate on social media. What was his special diet? Why wouldn’t he reveal his medical protocol? Why didn’t he throw himself into fundraising and awareness events? And that ultimate insult of all: of being an impostor, declaring that Stephen Hawking didn’t have ALS at all — not real ALS.
It all proved to me that they weren’t listening. Because through the years, Stephen Hawking indeed gave us his secret sauce. He led by example, and he left us words to follow.
“However difficult life may seem, there is always something you can do and succeed at. It matters that you don’t just give up.” –Stephen Hawking
Like many ALS patients, Hawking felt depressed following his diagnosis. But rather than drifting in sadness, he chose to follow his passion for understanding and explaining the cosmos. From his example, we learn the value of believing in ourselves and knowing what makes us excited. What excites us becomes “something to live for.” That can include our unique skills and knowledge. Finding that alone and sharing it with others brings balance to our well-being.
Some of us are naturals at fundraising for ALS while others are passionate about legislative awareness. Remember: Just because we have the disease, it doesn’t mean we can’t contribute in other arenas as well. I’d rather follow my passion than stand on the sidelines in judgment.
“I want to show that people need not be limited by physical handicaps as long as they are not disabled in spirit.” –Stephen Hawking
Throughout his disease, Hawking took advantage of available technology to help him continue to be productive. Following pneumonia that resulted in a tracheostomy and subsequent loss of his ability to speak, he added a voice synthesizer to his electric wheelchair. Following the loss of the use of his hands and fingers, Hawking relied on eye controls, and eventually controlled his computer by a jaw muscle.
Hawking taught us that being disabled is merely a perception. How we see ourselves, and our worry about how others see us, should not factor into whether we pursue our dreams. Using technology is not a sign of defeat. Rather, to me, it is a sign of strength, a willingness to stay in the fight, a strong sense of self.
“Look up to the stars, not down at your feet.” –Stephen Hawking
Here, I believe Hawking is telling us to look at the big picture, the possibilities, the opportunities.
We can get caught up dwelling on the past and what we’ve lost. How having ALS prevents us from doing things the way we used to do them. Or, we can choose to continue, to move forward, and have a life well-lived. We can live well while living with ALS.
Thank you, Stephen Hawking!
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