I suddenly have so many friends on Facebook who either have ALS or have some sort of relationship to it. That means that my feed is often full of ALS related news, including deaths. This week, the ALS community lost Kevin Gosnell, the founder of ALS One.
ALS One is a collaboration between different groups who are working to end the disease. Kevin, in his short time living with ALS, managed to get these groups together in a way that is admirable, but also shocking in its necessity. Why would it take a man who was diagnosed in 2015 to get Mass General, Harvard, UMass, the ALS Association, ALS TDI and others into a room together? Those people should have been in the room together a very, very long ass time ago. So, while I’m grateful for and impressed by Kevin’s initiative and achievements, I’m also frustrated by how they highlight a lot of what is wrong in the world of ALS.
I didn’t know Kevin. I had never met him, never spoken to him, and therefore have no right to feel anything but sympathy for his family and sadness over a life lost too soon. Many people are saying beautiful things about him in tributes and posts. It sounds like he was an incredible guy, and it’s bullshit that ALS took him.
But, I have to be honest, the news of his death brought up other emotions for me as well. Kevin lived with ALS for 15 months. 15 months. And I know that this will sound terrible, but when I heard of his death, part of me was relieved for him. I don’t mean to offend anyone with that statement. I know Kevin’s family is grieving right now, and I know how they wish ALS had never affected their lives. But it did. And it affects mine, and sometimes I just wonder if the shorter battles are the easier ones to bear. I’ve been living with ALS for five years, diagnosed for four, and I can say with certainty that dealing with the disease for this long changes your relationships. I don’t know if a shorter disease span is as corrosive. In some ways, maybe it’s more turbulent, as progression happens so quickly that it must feel like whiplash. One day you have a healthy father and a year later he is gone. I don’t envy the families who have to deal with that, and I certainly don’t mean to downplay their struggle.
But I’m tired. I’m tired of feeling like a burden, tired of how my disease is ruining other people’s lives. This is such a sensitive topic, and I already feel as though I’ve crossed a line. I’m admitting to something I’m not proud of, because I figure if I feel like this, there may be other ALS patients who feel this way, too. People who don’t want to die, but who are tired of living in a place where death announcements are more frequent than birth announcements. I don’t want to die. But It’s hard to live like this.
Living with this disease feels like playing a game of Chutes and Ladders, where you’re always losing, always sliding down. But in this game, there’s no discernible bottom. Meaning you just keep sliding, and although it seems like it should be a good thing that you don’t reach the end, sometimes it just feels bad. How long can you play the game? How much energy do you have?
Obviously, I don’t always feel this cynical and fatalistic. I’m describing a moment in time. I’m so sorry for everyone who has lost their life to ALS, and for every family member who is missing a loved one, or who is watching a downward trajectory. This disease is a monster, and living with it can bring some of the deepest joy and most extreme pain I know I’ve ever experienced. I wish that Kevin Gosnell and many others were still around to experience the joy. But I’m also somehow, just slightly, comforted by the end of their pain.