“Mitchell, I’m concerned you have ALS.” The Doctor’s statement stopped me in my tracks. My first thought was, wow, only my mom calls me Mitchell, and only when I’m in big trouble. This must be bad.
I know, in reality that’s not really funny. But if I don’t laugh, I’m gonna cry. And candidly, I’m about all cried out.
Yeah, my life changed forever that morning. One year ago. May 3, 2021. 9:38 AM. (Not like the moment stuck in my mind or anything). As I left his office, aimlessly wandering back towards the truck, everything was so surreal. It’s likely one of the closest things I’ve ever had to an out-of-body experience. My mind was blank, yet racing at the same time. The drive home took ten minutes or three hours, I’m really not sure which.
Once back home, I immediately consulted with Dr. Google. There I found tragic stories and magic cures. I found more information than I ever cared to know, and came to the stark realization that at that moment I was like anyone else who had never been directly impacted by this devastating disease. I knew a little, and I knew absolutely nothing. I understood, but yet I had no clue. And like most people when I tell them about my situation, I was left without words. (So if that’s happened to you when you heard, it’s ok, just know I understand) 🙂
The deeper I dug, the worse the reality became. Then it really hit me… how do you break something like this to your family. Remember the date? It’s the week before Mother’s Day. And two of the kids are still away at college. No way I can do this yet.
So I sat on the information for over three weeks. Yes, three long, lonely, excruciating weeks. Alone with this knowledge, every day a challenge to maintain my composure and put up the strong facade of a normal, everyday existence. (The Oscar for best Actor goes to … ) (again, humor, or attempted humor?, is a coping mechanism for me). 🙂
Sharing the information with Melanie and the kids was harder for me than the initial diagnosis. I’m not going in to all those details, but suffice to say it was likely the most emotional, stressful, and painful thing I’ve ever done in my life.
Here we are a year later. The past year has flown by. I think that happens when you’re presented with the ultimate deadline. The concept of ‘Live Like You Were Dying’ sounds great in a song (fantastic song, really). Being forced to play it out in real life is a little more intense. But if you really think about it, the tenets of the concept really should be embraced everyday, long before that reality is forced upon you, or before you miss it completely. All things considered, I feel incredibly blessed to actually have the opportunity to live out this philosophy. Or at least try to do so.
Selfishly, I have more to share at some point about the disease itself and my journey to diagnosis and beyond. Apologies in advance, but awareness is important, and the process is cathartic.
Hope you’ll hang around.
Peace, Hugs, and Love from here.