Steve Gleason was a professional football player who ended his season with the New Orleans Saints. The highlight of his sports career was a blocked punt which symbolized the birth of New Orleans after being so devastated by Hurricane Katrina. A statue of him stretched out with a flying leap to accomplish this feat is present in front of the Saints’ football stadium.
A few years after Gleason retired from football at the age of 33, he developed some mild physical symptoms which turned out to be ALS-Amyotrophic Lateral Sclerosis also known as Lou Gehrig’s Disease. This is a progressive muscle paralysis which over time results in total paralysis of all muscles, requiring a wheelchair and even a tracheostomy in order to breathe and survive. There are no cognitive or intellectual deficits with this disease. The course of the illness can be gradual over a few to several years usually resulting in death and as you can imagine, it can be devastating.
Shortly after he and his wife Michel were told about his terrible diagnosis, they learned that she was pregnant. It was at that time that Gleason decided that he was going to make an ongoing video blog of his life. His purpose was for him to record his daily life which would include expressing his memories and thoughts so his unborn offspring would come to know him and also know about the bond that he felt with his child. Sometime after this process was started, Clay Tweel, a documentary film producer learned of this project and met with the Gleason’s. They trusted Tweel and agreed he would help them with the video production, with the idea that he would eventually make a documentary film.
This project in one sense has become the ultimate reality show. The viewer of it becomes a fly on the wall to the everyday interactions in the lives of this very brave couple. We see Gleason’s speech gradually become difficult, his gait unsteady, and ultimately leading to a wheelchair. We are in the delivery room when he participates in the birth of his son, Rivers. We watch Rivers gradually developing into a toddler and ride with his dad on the electric wheelchair. We see the tears in Gleason’s eyes as he looks into the camera and imagines that he’s talking to a more grownup version of his son who he hopes someday will view his video. The viewer also realizes what a remarkable woman his wife Michel has turned out to be. It is hard to imagine how she handled being a wife, mother, caretaker and also finding that she was a skilled artist. The interaction between Gleason and his father is a story onto itself. His dad is a religious Christian who believes in faith healing. This is a source of great conflict between Gleason and his dad. There is a church scene where a faith healer exhorts Gleason to be cured and run which is quite heart-wrenching.
When people with this disease begin to lose their ability to speak, they often can use computerized speech synthesizers. You probably recall seeing video clips of the famous physicist, Steven Hawkings who has ALS himself and talks with an artificial electronic voice. An even more advanced device is one which records the voice of the patient while he still can speak and then the miracle of a special computer program will talk in the person’s voice when they type or even choose letters and words with their eyes. This was particularly dramatically demonstrated during a recorded conversation of Gleason and his wife during some difficult times. Unfortunately, this marvelous machine is not available to people without financial resources or even to people on Medicare. It turns out that Gleason along with family, friends, various donors including some people from the sports world set up a foundation which provided this equipment for people who needed them. They also lobbied Congress and eventually “Gleason’s Law” was passed. So now the US Government will provide this equipment for all who need it.
On one hand, this documentary movie is a sad story but it is actually a very affirming tale. It shows one man’s determination to establish a conversation with his unborn son, the amazing support of a dedicated wife, and the fortuitous involvement of a talented filmmaker. We have here the opportunity to see a very remarkable and uplifting documentary film, which we would strongly recommend to our readers. (2016)
Category: 4 Stars, Documentary | Tags: 2016, ALS, Amyotrophic Lateral Sclerosis, Clay Tweel, Gleason, Gleason's Law, Lou Gehrig's Disease, Michel Gleason, muscle paralysis, New Orleans Saints, speech synthesis, Steve Gleason, tracheostomy, wheelchair Comment »