The ALS community lost a very special life last week, the one and only, Stephen Hawking. He was an incredible human being in so many ways, but most importantly, he was an inspiration to all ALS patients around the world. Hawking was proof that patients could live a full life after their diagnosis, and a long one at that – his spanning more than 50 years.
Speaking of his diagnosis, let’s take a look at his early life starting with his younger years in England. Hawking was born in January 1942 in Oxford, England to Isobel Walker and Frank Hawking, a well-known research biologist. He was the oldest of four children and although he was an average student in primary school, everyone could tell he had brilliance within him.
Hawking went on to University College in Oxford, where he discovered a passion for cosmology because it dealt with “the big question” of the origin of the universe. He enjoyed his studies and then continued on to finish his PhD in Cambridge. It was at this time the “terrible thing” happened to Hawking at the young age of 21. He had been experiencing weakness in his muscles and would have frequent falling spells without a cause. In 1963, doctors officially diagnosed Hawking with ALS and gave him about 2-3 years to live.
As you would expect, his first reaction to the news was severe depression. His symptoms started to get worse and he was growing weaker and weaker by the day. Then out of the blue, the disease started to stabilize and the progression slowly halted. He was still losing control of his muscles, but Hawking was able to walk very short distances and perform a few simple tasks. It was a very small win, but it gave him hope and a new sense of purpose.
We would soon come to find out that Hawking was a lucky one of the few who had a different type of ALS, a slow-progressive variant. To this day, I don’t know if doctors even have a real reason for why the disease affected him so differently than others. Maybe it’s because he had a juvenile-onset that was diagnosed right after his teenage years? Maybe it’s because the motor neurons running his breathing and swallowing muscles weren’t severely impacted? Whatever the reason, he was a true miracle.
Although his disease was progressing at a slower rate, Hawking was aware that it would and could kill him at any time. But this death sentence didn’t slow him down one bit. If anything, it motivated him to accomplish even more with his life.
Hawking on death: “When you are faced with the possibility of an early death,” he recalled, “it makes you realize that life is worth living and that there are a lot of things you want to do.”
Hawking was a brilliant theorist and scientist. He had an amazing sense of discovery of the unknown and determination to prove/disprove his various hunches on the universe. After years of work, he went on to become the generation’s leader in exploring gravity and the properties of black holes.
His research led to a turning point in modern physics with a discovery that black holes were not really black at all. In fact, he found, they eventually fizzle, leaking radiation and particles, and finally explode and disappear. This discovery of “Hawking radiation,” as it is known, turned black holes upside down and transformed them from destroyers to creators & recyclers.
Hawking on depression: “Black holes ain’t as black as they are painted. They are not the eternal prisons they were once thought. Things can get out of a black hole both on the outside and possibly to another universe. So if you feel you are in a black hole, don’t give up — there’s a way out.”
Hawking & Technology
Unfortunately, the disease was still taking a toll on Hawking’s body at this time. He was still able to feed himself, get in/out of bed, and thanks to his wife Jane, preserve some of the remaining muscle strength he had by going up and down the stairs. Hawking was even able to retain some of his speech for quite some time.
A few years later, the care became too much and he had to be supported by a group nurses and home aides. Then in 1985, Hawking fell ill to pneumonia on a trip to Switzerland and was hanging on through life support. His wife wanted him to keep fighting and decided not to turn the support off, instead, the doctors inserted a breathing tube to save his life. The only drawback, Hawking’s voice had been completely silenced.
Hawking began to communicate by pointing at letters on a board before a computer expert developed a program called Equalizer. The program functioned by the user clicking a switch to browse through menus with letters and over 2,500 words, making it easier for Hawking to build sentences faster. The program would use a speech synthesizer (attached to his wheelchair) to vocalize what he was trying to say. Later on as he grew weaker, the program would be activated by twitching a cheek or blinking an eye. Hawking’s only complaint with the system – it gave him an American accent!
This new technology gave him the freedom to continue living his life. Hawking was a long-time professor at Cambridge, authored & released his first book “A Brief History of Time” which would go on to sell more than 10 million copies, traveled to different countries, took part in a zero gravity space flight, and became a celebrity of some sorts through his rare condition. Hawking’s life was depicted through tv specials and even on the big screen through the movie “The Theory of Everything” where he was portrayed by actor Eddie Redmayne.
Hawking & The ALS Community
Hawking is also a pioneer within the ALS community, a voice for those who have lost theirs. He showed strength and determination to remain curious and active whenever possible, despite the challenges that came with diagnosis. He wanted patients to enjoy and embrace life instead of letting the disease define every minute of every day.
Hawking on disabilities: “I want to show that people need not be limited by physical handicaps as long as they are not disabled in spirit.”
That’s why he is such an inspiration to so many people struggling with this aggressive disease. He showed them how to live regardless of their debilitating condition, and how to embrace all that life has to offer – the good and the bad. His highs and lows, his struggles and his accomplishments are all incredible lessons for ALS patients to keep fighting for another day. You may have been diagnosed with a disease that is taking control over your body, but don’t let that fool you, you are still in control of your life.
Outside of the ALS community, Hawking’s life raised awareness around the world and showed the importance of assistive technology like power wheelchairs & speech generating devices in the lives of people with the disease. This equipment allows them to live again and to have a higher quality of life, regardless of how much they might have left of it.
But I think the biggest impact Hawking left on the ALS community is a sense of hope for a better tomorrow. Hawking discovered the unknown with a curious and open mind – if he can decipher the mystery of black holes, ALS researchers can and will eventually crack the code of this terrible disease.
And I think the one thing that amazes me the most is that through all 50+ year of battling this disease, he never lost his sense of humor. Family, friends, colleagues all say that Hawking had a hilarious spirit. Take a look at an interview he did for late night TV show, Last Week Tonight with comedian John Oliver:
John Oliver: “You’ve stated that there could be an infinite number of parallel universes. Does that mean there’s a universe out there where I am smarter than you?”
Hawking: “Yes. And also a universe where you’re funny.”
Hawking & Life Lessons
I think everyone can learn something from Hawking’s life, regardless if you’re a brilliant scientist or fighting a terminal illness. He was a man that beat the incredible odds stacked against him his whole life. He was determined to accomplish everything he set his mind to and didn’t think twice about a silly little disease slowing him down. Hawking is a true inspiration for our generation.
Hawking on the meaning of life: “Remember to look up at the stars and not down at your feet. Try to make sense of what you see and wonder about what makes the universe exist. Be curious. And however difficult life may seem, there is always something you can do and succeed at.”
His life, his works, his teachings, and his wisdom have definitely made an impact on my life not only through my connection with ALS, but now through my marathon training. I have a goal in mind; I see it, I want it. I’m not letting anything stop me from succeeding – not an injury, not fatigue, not even my own doubt. I’m taking off from the starting line in Hopkinton and not looking back until I cross that finish on Boylston.
Check out my Crowdrise page to make a contribution to the ALS Association benefitting research & patient care services: http://bit.ly/BostonBeginnings262