2 Years, Feels Like 10
Firstly I’d like to thank everyone who donated to the GoFundMe. It’s never where I wanted to be but knowing there's a robust network of folks ready to support me, financially and otherwise stifles the sense of dread that arises when you start to do the math around ALS care, especially late stage (many forms of cancer are cheaper than ALS, woof). So thank you!
This past Saturday marked 2 years since diagnosis. I had a “shitty things only” party to commemorate the occasion, the suggestion being that you bring something of poor quality, generally uncool, or anything one might look at and say “I don’t want that”. One person brought cinnamon twists from Taco Bell, and then ate them all in front of me. Another person brought half-inflated balloons. Floating half-heartedly as if it were a chore, my favorite one read “Feel Better!” It was a gathering of equal parts friends and family and I had a really good time. If you missed it, you can catch the next one.
Looking back on the last 2 years is a surreal activity. It simultaneously feels like so long ago and just yesterday. There are periods where your life changes dramatically and times where you feel your life is firmly cemented where it is. One thing I know for sure: I will never view time in the same fashion. I look back at pre-ALS Grayson and he seems like a completely different individual, like someone else entirely. I know that I had a whole life before this, but these days it is hard to recall, like the memories aren’t my own.
At times, ALS can really monopolize your thoughts, conversations, and attention. It sort of feels like you're stuck in an enclosed space with someone who won't stop talking about something you have no interest in. The tremors and fasciculations metastasize into a quotidian drip-drip-drip-drip that becomes etched into your consciousness until you can’t remember ever feeling differently, (so how’s your Tuesday going?) and that’s enough ruminating for today.
On a positive note, I’m working to organize a screening of “Stitching Strength”, an ALS documentary by my neurologist Dr. Rick Bedlack. I’m hoping the Fine Arts Theatre here in Asheville will be amenable to hosting a night, or a few, to raise awareness and money for ALS research. The film aims to highlight the parts of us that ALS can’t touch, the positive aspects of people living with ALS that shine despite the disease. Stay tuned for more details.
-Grayson
Media I’m into right now:
