It’s May, ALS Awareness Month, and high time I re-launch my blog. I’ve just been having so much fun living (oh, and moving) that I’ve gotten out of the habit of writing on a regular basis.
Except I don’t want to write about ALS awareness. It’s exhausting and scary. A couple of people told me recently that ALS ruined their marriages, several more told me they would never stop grieving for their loved ones lost to this disease. I hate wading through words like apoptosis, necrosis, and macroautophagy (all of which mean “cell death”). I’m sick of the industry ALS supports, the politics of it all. Honestly, I’m even a little tired of ALS awareness posts.
From my little corner of the world, people seem pretty damn aware already — either from their own experiences, or mine.
Besides, when I think about my journey so far, what comes flooding to my mind are the people who I have met because of it. The deep friendships I never would have made (or re-made), the beautiful, unbelievably strong souls I never would have read about. The experiences I wouldn’t have had. We certainly wouldn’t have moved back to NC for me to spend more time with my parents or my friends here.
But I’m still a newbie in this space. I don’t know what it’s like (yet) to not be able to get up and move around when you want to, be fed through a hole in your stomach, be reliant on someone else for every single want or need. To know your own death is not somewhere nebulous in the future, but imminent.
I sure would rather spend my time and energy building sustainable cities, raising $ for bikes for kids with special needs, raising children with DP. But for whatever reason, God/the universe/fate/random chance ordained this to be my path and so I will fight alongside all of my fellow ALS warriors to bring attention and research dollars to this miserable, dignity-stealing disease until there is an effective treatment or cure. Something else because right now there’s just a whole lot of nothing. Just a bunch of elaborate, expensive technology to keep you as comfortable as possible until you die.
There are a lot of important dates within May — my friend Lisa’s birthday, the anniversary of her death, Ramblin’ Rose Raleigh triathlon which a bunch of Team Drea members (and I!) are doing, the 9th anniversary of Jon Blais’s death, the two-year mark of my initial diagnosis. So check back often (at least weekly) and I promise not to be so quiet 🙂