Rob and I watched the movie Gleason last week. He was out of town when I attended the San Francisco screening, so this was his first time seeing it. Now that it’s on iTunes and Amazon, I highly recommend that everyone check it out if you haven’t seen it already.
Seeing the movie for the second time was eye-opening for me in new ways. The first time I watched it, I was very focused on the relationship between Steve Gleason and his wife Michel as they navigated ALS. It seemed like they came to the disease from such a place of strength and connection, yet it was and is an incredible challenge to maintain a relationship. Rob and I know all about that, and judging by the conversations I have with other ALS patients, we are not the only ones. So this time, I set the relationship stuff aside, and I just watched Steve.
I watched him as a strong professional football player, muscled and aggressive and fast. I watched him as a groom, and as a traveler. I watched as he fell while attempting to run across the rug of a church. I watched as his voice failed him, as he ate via a tube, as he got a tracheotomy. I watched him watch his little boy, and I felt that I knew what it was like. Even though I don’t have a feeding tube, even though I don’t have a tracheotomy, even though my voice can still be heard. I understood when he cried and said he was having a bad day. I understood when his nose was itchy and he tried to scratch it on a countertop. I understood when he wanted his son, and he had to ask someone else to bring him close.
I understood what it felt like to be in a melting body. I understand that every day.
At bedtime, I asked Rob to tell me about some of his memories from when we lived in New York. I wanted to go back to our life there, if only in my mind. I was wearing a breathing mask and braces on my feet, and my hands were in my lap, the way a person is arranged inside a coffin. So I wanted to talk about what it was like when I had everything, when the word progression signified a move in the right direction. Rob said sweeping things about friends and fitness, but I was craving something more specific. The time we both wore white pants out to dinner, and I felt way too matchy as we walked down the street. The time I took him to a yoga class and didn’t tell him it was 90 minutes long until it was halfway over, and he was extraordinarily unhappy. Our first date at a restaurant that made me so sick the next morning that I had to rush down a flight of stairs to the doorless basement bathroom of a West Village bookstore. My life before ALS. And yes, that’s right, I am glorifying a memory of having diarrhea in a public place. Because that required independence, and I had an overabundance.
For the most part, Steve Gleason seems unfailingly positive. I understand-I think-that it is his sense of purpose that allows this to be true. Steve is doing incredibly important work, both for the ALS community and for his family. As his wife Michel says in the movie, Steve is a hero two times, two different ways. He gave hope to an entire city when he was a football player, and his second act has been even more impressive. I know that Steve is only a man, that he also requires inspiration, that he still has bad days. I don’t know what he thinks about when he lies down to sleep, but I wonder if it’s less about the past and more about what he plans to do next. It wouldn’t surprise me, because that must be what you do when you are a person who refuses to melt away.
Dear Sarah,
I am thankful that I have the opportunity to have met you through your written words. Your blog reminds me to be grateful for what I have, and puts things in perspective, when I am complaining about trivial issues — Everyday !
Happy Thanksgiving
Sarah, your writing continues to be so beautiful. I always think of you and Rob at your gorgeous, fun and totally amazing wedding reception in Chicago. You were and still are STUNNING!! You literally took my breath away when I walked in the door and you greeted us so happily and warmly. Dollard and I were so happy to be included in the celebration. And of course there is always the random run-in in Miami- another fantastic memory.
My heart and love are with you and Rob and Scarlet and your whole family. Always. You and Steve Gleason and the ALS community inspire us all.
Beth