I saw the movie "Gleason" yesterday at the Landmark Cinema on Clark Street in Chicago. I went with two dear friends, who sat, protectively, one on either side of me. Given that it's a movie about a young man's fight with ALS, and my own son, 29 years old, is also battling ALS, I had to steel myself to go. I was afraid of feeling very bad afterward, but that's not what happened.
There's a lot of hard stuff in the movie. ALS takes a lot of stuff from people (including their modesty). It's a disaster that happens not just to individuals but to friends and families—spouses and parents and children. And the movie shows all of this honestly--in caregivers' exhaustion, altered relationships, constant fighting to hang on to meaning. Chances are, if you see it, you'll cry, and it may be that where you cry might have as much to do with your own life and where you're hurting, as it has to do with Steve Gleason and others with ALS.
In the end, I walked back to the car, through the maze of urban theatre ramps and stairs, feeling exhilarated. It's not that I've survived the challenges of ALS, and certainly I know that the pain and fear my son and his wife face daily are much greater than my own. But there's something about being knocked back on your ass that brings life and love into focus. Go see the movie and be reminded of what it means to be human and just how sweet that is.
Choose your slogan—#nowhiteflags, #kissmyals, #speed4sarah, #gronksgrace, so many more. Do an Ice Bucket Challenge, participate in an ALS Walk, or just make a donation at alsa.org or the ALS Therapy Development Institute. Because we have to beat this thing someday. But meanwhile--go see Gleason. You'll be glad you did.