Neuro Note #2: The Theory of Everything

For my second neuro note, I decided to write about the Oscar Award winning movie, The Theory of Everything. This movie is about Stephen Hawking and how the devastating disease, ALS, impacted his life. I chose this movie because when I think about ALS, I think of Stephen Hawking as the famous figure that I learned about when I was younger, but I mostly only knew about his accomplishments as a physicists and cosmologist. As I study occupational therapy more and learned more about what ALS was, I was intrigued to know more about his personal life experiences and how he was affected by the disease.

To give a little background, the movie skips ahead to when Stephen was 20 years old, studying physics at University College, Oxford, and then as he went on to study cosmology at Cambridge University. While studying there, he began to have slight symptoms such as weakness and twitching in his hands and impaired balance, causing him to trip and fall. One fall in particular hurt him very badly, causing him to go to the doctor to get tests ran. Just shy of his 21st birthday, Stephen was diagnosed with Amyotrophic Lateral Sclerosis (ALS), also known as Lou Gehrig's Disease, and was given only two years to live. Shortly after his diagnoses, his ALS began to progress fairly rapidly. Stephen began to experience muscle spasms in his wrists, muscle stiffness of his hands, and muscle weakness in his legs, causing him to use a cane, which quickly became two, because of how difficult walking was for him. His girlfriend at the time, Jane Wilde, vowed to fight the disease and symptoms with him, and they were married two years later. Soon after they were married, they had a son, and the symptoms of his disease kept worsening. Stephen had to slither down the stairs to get down them, his speech started to become slower and slightly slurred, and the muscle weakness started to make it hard to even eat on his own. Through all of this, he obtained his Ph.D. from Cambridge University based on his black hole theory. Shortly after, Stephen started to use a manual wheelchair and was assisted by his wife to do his self care activities such as dressing, feeding, and transferring. The Hawking's then had a baby girl, but Stephen wasn't able to help take care of the children, causing a lot of stress on his wife to take care of everything and everyone. Stephen eventually got a motorized wheelchair that he could control with his hand. He soon became even more rigid, being barely able to move at all, had trouble swallowing, causing him to choke very frequently, and his speech was so slurred that people could barely understand what he was trying to say. Due to the progression of his symptoms, the Hawking family finally got a friend to help take care of Stephen, and he was especially helpful when Stephen and Jane had their third child because Stephen could not help take care of, or even hold their new baby boy.

A catastrophic event happened to Stephen where he went into a coma and was put on a ventilator caused by pneumonia, and the doctors weren't sure he would survive it. They told Jane that the only way he would have a chance was for him to undergo a tracheotomy, which would cause him to never be able to speak again, but Jane insisted that they keep fighting. (Here's where some OT strategies really come into play for Mr. Hawking!) Stephen survived, and because he could no longer talk, his wife began communicating with him through a spelling board. He would blink to indicate which letters he wanted to use to form words so he could still be able to communicate. Soon after, the Hawking's finally got the money to hire a full-time in-home caregiver. She worked with him on using the spelling board, and pushed him like no one had in a long time. He respected her because she didn't pity him, and he knew she just wanted him to have the best life he could living with ALS. Not too long after he became a pro at the spelling board, Stephen began using some very high tech equipment that was able to speak for him. This speech-generating computer spoke in a robot voice and allowed him to select words by using a remote control. Eventually, Stephen used the muscles in his cheek to control the device when he couldn't control the remote with his hand anymore.

Stephen defied many odds that ALS threw his way. While in the later stages of ALS, he wrote his award winning book, A Brief History of Time, that sold more than 10 million copies worldwide, with his speech-generating computer. He achieved a multitude of awards, including the Presidential Medal of Freedom, the Albert Einstein Award, and the Wolf Prize in Physics, just to name a few! Before he was diagnosed with ALS, Stephen loved to ride bikes, play croquet, hang out with his friends, and study science. Though he had to quit most of these things when ALS forced him to, he never gave up on his true love of science. Stephen Hawking died at the age of 76 on March 14th, 2018, living 55 more years than doctors told him he would.

I think what I learned the most from watching this movie is that when someone is determined to do something, they can achieve the unimaginable. Who could've predicted that Stephen would live until he was 76, be able to write books when his hands and speech quit working, or even be knighted by the Queen (which he actually declined)? Stephen never gave up, and his story really touched me and gave me a whole new perspective of how to view my clients one day. This movie showed me how devastating the disease is not only for the person with ALS, but also for the family. Jane's whole life was revolved around taking care of Stephen and their three children all day, everyday. This affected her emotionally and physically, as well as her marriage with Stephen, and their relationship with their children and families. I'm reminded to be an empathetic OT one day, and to encourage not just my clients, but also their families. The families are affected greatly as well, and may need help just as the client does. The last lesson that I gained from this movie is to always be mindful and respectful of everyone's beliefs. I almost didn't watch this movie because I disagree with some of Stephen's scientific theories, but I'm so glad I did! I was inspired by the life of Stephen Hawking and how he lived with passion and courage until the day he passed. This taught me that as an OT one day, I will have clients who believe or think differently than I do, but it is my job to remain client-centered and support them in whatever THEY love or love to do. I'm reminded to support and encourage my client's thoughts, beliefs, and activities that are important to them whether I agree or not (as long as they're not causing them harm), because my job will be to help them achieve their best quality of life, and not my own.

PS: I highly recommend this movie to everyone! Go check it out on Netflix while you can!

Citations:
Redmayne, E. (Actor). Marsh, J. (Director). Bevan, T (Producer). (2014). The Theory of Everything            [Movie].

Photo retrieved from: https://www.irishnews.com/magazine/science/2018/03/14/news/stephen-                      hawking-delighted-at-redmayne-s-oscar-for-the-theory-of-everything-1278297/