So, then. In my adopted home state of Minnesota, people use that phrase once they’re past the pleasantries. It clears throats and cuts the silence. Cuts to the chase. The “so” is emphasized and elongated, requiring the speaker to slightly purse the lips and lift the vowel.
My name is Jason Carr. I’m writing to you because I have ALS, or Lou Gehrig’s disease. Before illness found me, I used my body to express myself, relieve stress, and earn a living. All systems were go. I played guitar, cooked, swam with my family, and worked as a carpenter. I ran up snowy hills and down sand dunes, mowed the lawn, drove my truck, and walked dogs. Those pleasures are no longer accessible to me. They gradually slipped away over the past two years. At the time of my diagnosis, I was a fit and trim 40 year-old husband and father. I was comfortable with who I was and with the trajectory of my life. The loss of my physicality has been brutal. The disease tears at my self-image, my sense of well-being, and even my masculinity. Oh, and it’s terminal. It sucks, and there’s a lot more sucking to come. We’ll talk more about ALS, but for now you should know that it’s a progressive neurodegenerative disease that destroys the wiring connecting the brain to the voluntary muscles. Once in motion, it’s unstoppable. There just are no proven and potent treatments, and before dying from respiratory failure, victims will become mostly or completely paralyzed. In a sick twist, senses and thinking usually remain sharp. Yay!
So, I’m in dire need of release. Like I said, I can no longer go down into the basement and take out my guitar and rip into a minor blues. Can’t pummel any heavy bags or sprint through the woods. I can write to you, though. I think it could be really good for me, and maybe for you, too. I’ve read several blogs and memoirs by and about others who’ve been through this. Some have been deeply introspective, philosophical, and spiritual. Others have chased humour and adventure through the nightmare. And some have detailed the lengths to which they’ve gone in order to stay alive. Most were a blend of these elements, with a unique mix for each author. I want to give you an idea of what it’s like to suspect that something is horribly wrong with your health, to receive a hopeless diagnosis, and to then steadily lose things that make you, “you”. I also want to share the ways that I’ve been looking to adapt and learn and hopefully grow in spite of this shit. I want to revisit past chapters from my life. I want to lay a few of my favorite things on you. I want to give unsolicited opinions and advice and make closing arguments. I definitely want to share some recipes and handyman tips. I hope you’ll indulge me.
My family and I just returned from a two week tour of the southeast. It stirred me up inside, seeing people and places from ten, twenty, and thirty years ago. We saw my elementary school, sadly shabby in a revitalized Atlanta neighborhood. We gathered with high school buddies at a place along a river where I’d had the highest times, laughed in Athens with the echoes of my rock band, detoured to the Carolinas to learn from friends about refurbishing national parks and flying small airplanes, and stopped in Savannah to see the exact spot where I realized who my wife would be. I stuffed myself with shrimp and grits in St. Augustine and we drank strong coffee with cousins in Auburn, Alabama. It was great! It was also heavy. Remember how in the movie, “Back to the Future”, Marty McFly keeps saying, “That’s heavy…”? Then Doc asks him whether, in the future, something is wrong with the earth’s gravitational pull. When you have ALS, something does feel increasingly wrong with gravity and it’s hard to stop noticing it and the implications.
I believe that it’s good to be mindful of one’s mortality. It makes life more vivid as you realize the stakes of your choices and the fleeting nature of your options and abilities. You’re invested and present. But being mindful of one’s ALS is a drag. It spoils experience like burnt garlic or rancid nuts in an otherwise delicious dish. You can’t get past it. It’s an out-of-tune instrument at a live performance. The other night, a friend remarked that he sometimes forgets I have ALS. I forget, too, for blessed moments. But when I recall the full picture, what I sometimes feel is envy for what I used to have and who I used to be and for other people. I feel I’m being cheated. And envy sure isn’t conducive to happiness.
We all have our troubles, though. I see that more than ever now. I have had amazing luck in the main of my life, and I hope that I can make it clear just how fun and interesting it’s been and still is. This writing will remind me. I probably should have started a long time ago. Thanks again for indulging me.