Yesterday, I saw an incredible movie called Gleason. It is currently out in theaters in limited release. Though it is a documentary, I hope this movie will have a much wider release soon. It is already getting Oscar buzz and is getting a 96% on rotten tomatoes. I can't imagine what 4% of people didn't like it. The movie follows the life of retired New Orleans Saints' football player, Steve Gleason, who is from Spokane, Washington and played college football at WSU. While playing for the Saints, he met and went on to marry New Orleans native, Michel Varisco. Before the birth of their son, Rivers, he was diagnosed with ALS. The movie follows their journey as a family through the progression of the illness.
I have seen other movies about ALS including The Theory of Everything and Jason Becker: Not Dead Yet. Both are incredible movies but this movie offers something different. Before losing his voice, Steve starts making video recordings for his son since the life expectancy for ALS is typically 2-5 years following diagnosis. The movie focuses on the father son relationship with Steve and his own father as well. Steve's father, who is highly Christian and religious, goes on his own journey of accepting Steve's way of having faith, accepting Steve's condition, and accepting that there is only so much he can do other than develop compassion to help his son. I cried early on in the movie and didn't stop crying until the end. But the part where I had to keep myself from wailing was when Steve, with slurred speech and as loud as he can, almost yells at his father, "my soul is saved!" At that, his father takes him into his arms and holds him and they both cry together in a deep embrace. The whole thing reminds me of that excellent, powerful, Christian song "He's My Son" by Mark Schultz.
The movie also does a great job of including the caregiver's perspective through Michel's experience of becoming Steve's main caregiver and how exhausting it can be. Being a caregiver is highly stressful, exhausting and undervalued in our society. It is the patient who gets all the attention, sympathy and compassion while very few stop to ask the caregiver how they are doing. I like how the movie doesn't shy away from Michel's journey through anger, frustration, depression and apathy as a caregiver and spouse. In some ways, it is almost harder to be in the position of caregiver or spouse to a person who is diagnosed with a life-threatening condition. You have no control over the situation as you watch your loved one go through incredible pain. Mental health experts say that it can be more traumatizing to witness something traumatic than to actually go through the traumatic experience yourself.
Above all, the movie is so inspirational. Steve starts an organization called Team Gleason with the slogan "No White Flags" to bring awareness to ALS and to assist those with ALS and their families in getting equipment and in funding the experiences one might miss out on due to the limited mobility and functioning those with ALS contend with. It brings in ideas about healthcare and Team Gleason's fight to get things like Speech Generating Devices covered under Medicare. These devices are what help those with ALS have a voice. If they aren't covered, you are in effect saying that their voice doesn't matter. The movie makes you think less about and complain less about the things in your life that aren't ideal. Since seeing the movie, I have adopted a new mantra to remind myself of this when I start getting in victim mode or start complaining about things that don't really matter: "No white flags."