My mom asked the other day if I cared if people knew how old I was. I believe I said something like, “Hell no, I’m supposed to be dead by now.”
And that pretty much sums up how I feel about turning 40. Amazing what a shift in perspective will do. Sarah’s 40th birthday post was her last. I miss her so, and Cory, and Lisa, all of whom will never make it to 40.
So when people kept asking me what I wanted to do for my birthday, my reflexive thought was, whatever I want, because I’m still here. Party? No, pandemic. Zoom party? No, awkward. Presents? No, being alive is gift enough. A cure for ALS? Bingo. For that, I defer to my friends who have been cooking up a fundraising scheme that I promised not to click on to discover what they were up to 🙂
As to what I want to do, I was not kidding. I made a list of 40 things I want to do on my birthday-slash-birthday-weekend. Here is a sampling:
2. Sola Coffee when I wake up (Check!)
4. Pool with my parents
5-8. Dinner with my DP & my parents, consisting of all my favorites: steak, stuffed mushrooms, sweet potato tots, tiramisu
10. Whatever I want to listen to on the drive to the cabin we rented for the weekend
16. Summit Coffee in Asheville and I actually want to go inside and see it
25. Figure out how to see Jody safely for a beer
40. Reserved for DP for something he actually wants to do (…for me)
You see, this is all gravy. This is the birthday I never dreamed I’d live to see. When I was diagnosed with ALS at 33, I’d gone from a half Ironman to walking with a cane in 8 months. My voice changed. It’s no wonder I assumed I’d be gone in the typical 2-5 years. Jon Blais was my age when he was diagnosed, did an Ironman, and was dead by 35.
Those were the facts I confronted then. It was all I could do to wrap my head around it, and that didn’t leave any room for hope.
But hope fought back anyway.
It fought back in miles run (or triked), hours in the pool, money raised, creative fundraisers, care packages, new friends and reconnected ones, challenging ourselves to do hard things, plowing our losses into something positive, miracles big and small…in short, love.
Love and hope can’t always save the ones we love, but it saves us. And it saved me.
Thank you, friends. I love you all.