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As an ALS Patient, Here's What I Thought About The Theory of Everything

02/19/2015 03:44 pm ET | Updated Apr 21, 2015
Karwai Tang via Getty Images

It was with a twinge of trepidation that I attended the movie The Theory of Everything, one of the films vying for Best Picture at this Sunday'sAcademy Awards. I have traveled the same road as Stephen Hawking, facing similar issues and challenges ushered into our lives by ALS. He and I were both diagnosed earlier than the average age (21 and 44 respectively) and we have lived with the disease well beyond the normal survival time of 2-3 years. My 22 years is dwarfed by his 51 years.

So how would I react to a Hollywood conjured representation of a nightmare that I am forced to live every day? How would I feel seeing a personal hero portrayed by some actor trying to interpret our grim realities of living in a body ravaged by paralysis juxtaposed with a vivid, robust intellect and a joie de vivre?

I was not disappointed. Eddie Redmayne was almost picture perfect in his overall accurate portrayal of Hawking. He captured minute details such as contractures of Hawking's hands due to prolonged muscle spasticity caused by ALS. Even Hawking's iconic body slant, head tilt and smile, common byproducts of muscle wasting with ALS, were effectively recreated by Redmayne's portrayal. His lines and later contortions made him appear to be a patient, acting as a patient. I marveled at how well Redmayne was able to depict the physical manifestations of the disease.

One of the poignant moments was when I watched him innocently trip and fall while walking on the campus lawn when he still did not know he was sick. I also experienced those unsettling falling episodes. They were the final straw that compelled me to see a neurologist. Watching it on the screen happening to someone else was a familiar, bittersweet flashback. So too was the scene in which he was diagnosed. It pained me to relive it.

Redmayne tried to illustrate the challenges of walking with ALS. The advancing paralysis in Hawkings legs depicted in the film by walking pigeon toed was one of the few inaccurate scenes I noticed. Patients cannot walk due to muscle weakness and foot drop. These conditions are nearly impossible for an able bodied person to replicate so the actor attempted to create another visual to convey the idea but in real ALS life, walking is much more hesitant, imbalanced and limb dragging.

I resonated with the frustration and anger shown in the scene where Hawking was being encouraged to use an augmentative communication device, an alphabet board to spell out his thoughts. The audience has no idea the isolation and terror that scene illustrated. Imagine this brilliant, prolific mind limited to expressing a single letter at a time. I am losing my ability to speak and only a few people are able to decipher my words. Watching Redmayne's rejection of the overtures to communicate stung. How will I be able to handle that final day of speaking when it comes?

Like Hawking, I am independent to a fault and I enjoyed the movie's focus on continuing to live despite overwhelming challenges. He raised a family, pursued a career and fell in and out of love (the resemblance ends here as I am still in love and married to my childhood sweetheart of 50 years). The audience was treated to a guidebook on living life to its fullest. Hawking is a model for all of us. There is no excuse for saying I can't do it and simply giving up.

My final thoughts are about something that underscores the entire movie. I am reminded of a TV show from 20 years ago when Morrie Schwartz ("Tuesdays with Morrie") appeared on "Nightline" with Ted Koppel. When asked when Morrie would know it was time for him to give up, he said when he could no longer wipe his ass without help. At the time, I was very early in my diagnosis. I had no idea how significant those words would become. Vanity ends when ALS begins. One cannot live long with ALS unless they are willing to embrace help. Stephen's wife, well played by Felicity Jones, was emblematic of caregivers everywhere who try keeping their loved ones well cared for, focused on the future and alive. I vicariously was also carried to the toilet, fed, dressed and transported as Redmayne was cared for in the movie. Without caregivers, I would not be writing this Op Ed piece. I would be dead.

Through The Theory of Everything, moviegoers were given a reasonably accurate glimpse into the lives of ALS patients. While seeing a story about a remarkable man who taught the world about astronomical concepts in the universe, the audience also learns about the limitless power within each of us. This is the message that I hope everyone who sees the movie and knows someone with ALS, someone like me, takes away from the theater.