In 2005 at age thirty, filmmaker Patrick O’Brien’s leg started shaking and wouldn’t stop. Soon after he was diagnosed with amyotrophic lateral sclerosis (ALS). When he was told he had between 2–5 years to live he decided to film his descent into the black hole of ALS. There is no cure or treatment, and every patient with the disease has a 100% chance of succumbing to it. TransFatty Lives is result of nearly ten years of footage documenting the heartbreaking story of a young man being robbed of his ability to talk, walk, and even breathe, and showing where he is now.

Before his diagnosis, O’Brien was already an accomplished filmmaker. He’d won numerous awards for his films which include, Suicidal Eggplant, Cancer Zoo Review, and Born Again Porn Star. He was also well known for his music as DJ TransFatty. At a certain point in the film O’ Brien becomes totally unable to care for himself, and since the footage spans so many years, we see many of the people that have come and gone through his life. There are those that were around in the beginning but left as the illness took control, and then there are the few that actually stuck it out, all the way from beginning to end. His sister shines brightly here.

While this film is about highlighting the horror of ALS, and showing firsthand what it does—how many films actually document the entire degradation process in this way? —an even more pertinent issue is how ALS patients are forced to live if the they choose to live at all, after they no longer have bodily control. At a certain point, the ALS patient looses his/her ability to breathe and so must make the crucial decision whether to end his/her life, or to continue living using a ventilator. O’Brien has a son he wanted to watch grow up, so he chose to live.

Once O’Brien goes on the ventilator he is placed in a facility where he is stagnant. He sits in a room all day without any stimulation, and passes his days hoping for things to get better. He spends five years like this before finally moving to a facility where he gains the capacity to live a more comfortable life. But most ALS patients do not have such success stories, and many never get out of their drab hospital rooms, to quote director O’Brien, “ALS isn’t incurable. It’s just underfunded.”