I recently joined an ALS support group on Facebook, the first time I’ve interacted with fellow “sufferers”. The ALS community actually calls us “pALS”, people with ALS. I’ve already felt a lot of support from a group of people who understand what it’s like.
I commented on a few posts before thinking I should introduce myself. Writing yet another description of my history with ALS, I posted “then and now” photos and ended by telling them about my book. “Then” was from Lenny and Laura’s wedding in 2009; “now” was in my chair on the Raven’s Ridge trail in 2020.
I find myself in a strange place: I’m an O.G. (Original Gangster, a term of respect for those who came before) and a newbie at the same time. It’s been more than twelve years since my symptoms began, yet compared to so many pALS, my journey has only just started. So many of the contributors are caretakers for pALS who can no longer move or speak, or indeed, have already passed. I was (and mostly, still am) afraid they’d be jealous or angry at my relatively good fortune.
But then, I’m only 38 years old. Whether group members read my introduction―explaining, among other things, that my symptoms began at 26―or have only glimpsed my profile picture, they should know I’m much younger than the majority. So, maybe I’m the one who should feel envious of their 50, 60, or 70 healthy years on this planet.
I’ve always avoided these groups like I’ve avoided my future; it’s much easier to take one day at a time. Indeed, I’m sure that’s the only way to keep my mind semi-functional. Accepting the present is tough enough; embracing a thoroughly terrifying and hopeless future doesn’t seem possible.
It feels good to help pALS and the people around them learn from my experience. I’m not sure that I’m offering any entirely original insight, but everyone’s experience is so different, I’m happy to be another voice. Sometimes I might see things from a different angle.
Admittedly, I purposely avoid some posts: they’re too heavy and I’d very much rather stay in the dark. Some begin with disclaimers, like *Spoiler Alert* in a movie review. I’ve even, in only a few weeks of sporadic viewing, seen *This May Be Removed*. But this wasn’t any conspiracy theorist claiming censorship, it was a post about suicide. It seemed to be seeking practical advice, but I didn’t get past the first line. The user obviously felt it violated the rules or spirit of the “Support” group. I don’t know if it was taken down and I’m not going to check.
Upon publishing my book, a few friends asked me if I minded that they told some people. As if I were writing to a limited audience. No, the band-aid is fully torn off; my story is out. This is a big part of who I am, and I’ve flipped that switch in my mind.