Neuro Note 3: Trans Fatty Lives
Trans Fatty Lives is a documentary about a man named Patrick O'Brien who was diagnosed with ALS at the age of thirty. Prior to his diagnosis, his persona was TransFatty and he enjoyed making music, films, and artistic photography and continued his passion of these things throughout his ALS journey. At the time of his diagnosis, he was making a film about an old restaurant he loved named Howard Johnson's. He asked his film crew to instead turn the cameras onto him once he was diagnosed with ALS. Patrick seems to be dedicating several messages and his story to a little boy, his son, who we aren't sure about until later. This documentary took me on a very emotional ride where I often was laughing while I had tears running down my face. Patrick had a great way of turning the unthinkable into some odd humor that you couldn't resist laughing at. For example, in one very powerful scene where Patrick was pleading to not have a tracheotomy as he was gasping for air, the paramedic asks him how he is doing and his response was "Never been better," with a smile on his face.
The documentary begins with showing the fun, adventurous life of "TransFatty" merged with his first visits to the doctor. Patrick had been falling and having leg spasms and his sister and brother-in-law, who are physicians, suspected that there was a neuromuscular dysfunction going on with him. Once given a positive diagnosis, Patrick cracks jokes and makes it his mission to raise awareness for a disease that has no cure and show the world what ALS looks like in it's rawest form. Very early on, the film shows Patrick falling and losing mobility in his hands. There was then a quick progression to him being in a mobilized wheelchair and depending on his father to somehow get him in the shower without his spastic legs prohibiting it. Patrick loses the ability to swallow and opts to have a feeding tube inserted where even then he still would have fun with friends as they poured beer through his tube. An acquaintance comes into Patrick's life to help and eventually falls in love with Patrick. He makes a point to comically say how one thing on his body still works just fine as he next shows their pregnancy announcement. Sean Patrick is welcomed into the documentary and Patrick's life is changed forever. A new sense of "fight" was instilled in him and he was going to stay around as long as he could for his son. Caring for Sean and Patrick became too much and Patrick moved in with his sister where the trache scene is aired. His ability to breathe was lost, a trache was inserted, and he moves to a facility where he can have around the clock care for his ventilator. In this facility, Patrick takes us with him as he faces depression, anxiety, and loneliness. The mother of his child will no longer let him see their son and said that Sean deserves a "father with two working legs." At this point nearly ten years later, Patrick cannot move any part of his body, cannot breathe, swallow, full B&B dysfunction, and can only communicate through a visual system he uses with his eyes directed at a screen. Still, he spreads awareness and stays in touch with his supporters! Thankfully, the documentary has a better ending where he gets to see his son, is staying at a new facility where he was the inspiration for the foundation, and he is feeling more upbeat.
One thing I did not realize was that the "Ice Bucket Challenge" was to raise awareness and produce funding for ALS. Oddly enough, I did this challenge and even said the letters "A-L-S" in that video yet it still never registered in my head! At one point, we see Patrick having a bucket of ice water dumped on him and the lightbulb turned on for me. I did some research about where the challenge began and the positive outcomes from it and the results were amazing. The challenge didn't begin about ALS but rather another charity and eventually it took off as for ALS after just the first few videos. Tens of millions of dollars were raised during this seemingly silly trend that we all participated in. So cool! I cried more in this film than I have in awhile but in a way I haven't before. I felt so sad for someone who didn't feel sad for themselves and never once let this diagnosis put him down or stop his smile. It put a lot of things into perspective on what a "bad" day actually looks like. I plan to watch this documentary again and recommend it to anyone who wants to know about ALS. Truly, I'd recommend it to people who even think they know about it because I learned so much in this film that I didn't realize happened. Primarily, the progression of the motor loss and life after swallowing and breathing subside. This was a great learning experience!!
The documentary begins with showing the fun, adventurous life of "TransFatty" merged with his first visits to the doctor. Patrick had been falling and having leg spasms and his sister and brother-in-law, who are physicians, suspected that there was a neuromuscular dysfunction going on with him. Once given a positive diagnosis, Patrick cracks jokes and makes it his mission to raise awareness for a disease that has no cure and show the world what ALS looks like in it's rawest form. Very early on, the film shows Patrick falling and losing mobility in his hands. There was then a quick progression to him being in a mobilized wheelchair and depending on his father to somehow get him in the shower without his spastic legs prohibiting it. Patrick loses the ability to swallow and opts to have a feeding tube inserted where even then he still would have fun with friends as they poured beer through his tube. An acquaintance comes into Patrick's life to help and eventually falls in love with Patrick. He makes a point to comically say how one thing on his body still works just fine as he next shows their pregnancy announcement. Sean Patrick is welcomed into the documentary and Patrick's life is changed forever. A new sense of "fight" was instilled in him and he was going to stay around as long as he could for his son. Caring for Sean and Patrick became too much and Patrick moved in with his sister where the trache scene is aired. His ability to breathe was lost, a trache was inserted, and he moves to a facility where he can have around the clock care for his ventilator. In this facility, Patrick takes us with him as he faces depression, anxiety, and loneliness. The mother of his child will no longer let him see their son and said that Sean deserves a "father with two working legs." At this point nearly ten years later, Patrick cannot move any part of his body, cannot breathe, swallow, full B&B dysfunction, and can only communicate through a visual system he uses with his eyes directed at a screen. Still, he spreads awareness and stays in touch with his supporters! Thankfully, the documentary has a better ending where he gets to see his son, is staying at a new facility where he was the inspiration for the foundation, and he is feeling more upbeat.
One thing I did not realize was that the "Ice Bucket Challenge" was to raise awareness and produce funding for ALS. Oddly enough, I did this challenge and even said the letters "A-L-S" in that video yet it still never registered in my head! At one point, we see Patrick having a bucket of ice water dumped on him and the lightbulb turned on for me. I did some research about where the challenge began and the positive outcomes from it and the results were amazing. The challenge didn't begin about ALS but rather another charity and eventually it took off as for ALS after just the first few videos. Tens of millions of dollars were raised during this seemingly silly trend that we all participated in. So cool! I cried more in this film than I have in awhile but in a way I haven't before. I felt so sad for someone who didn't feel sad for themselves and never once let this diagnosis put him down or stop his smile. It put a lot of things into perspective on what a "bad" day actually looks like. I plan to watch this documentary again and recommend it to anyone who wants to know about ALS. Truly, I'd recommend it to people who even think they know about it because I learned so much in this film that I didn't realize happened. Primarily, the progression of the motor loss and life after swallowing and breathing subside. This was a great learning experience!!
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