[*Yes, as Elizabeth Gilbert’s new book, Big Magic. If you have not read it, I suggest you or your fingers run-not-walk to Amazon, Audible, or your local independent bookseller. NOW.]
On Saturday, the day after I stopped the drug, DP and I spent the morning becoming ALS.net “ambassadors”* for their outreach in the coming year.
It was the very same passion that drives Mary Ann & Bob Blais, and Jon before his death, with the Blazeman Foundation. I’ve never seen that depth of conviction so up close and personal anywhere else in ALS-land.
The other big event of Saturday was ALS.net’s fundraising gala, the White Coat Affair. I’d been asked to give a short, 3-minute speech as part of the program. After dinner, there were 3 pairs of speakers – a person with ALS and an ALS.net staff member – sharing their stories and discussing the research.
I spoke last and was more than a little intimidated to be following Pat Quinn, one of THE founders of the Ice Bucket Challenge that brought in $220 million worldwide in 2014. At the last minute, I made DP come up to the microphone with me to hold my speech and calm my nerves…or at least keep me upright.
|ALS.net ambassadors: Teresa, Beth, me. LOVE THESE LADIES!!|
I’ll just give you one example. Arthur “Arty” Cohen and his wife, Janet, were at our table. Arty is the Chief Pickle Officer (CPO) of PickALS, a nonprofit in Maplewood, NJ that sells pickles to raise money for ALS research. Cukes for a cure.
Even though ALS has taken his voice completely, we carried on like old friends as he typed with one thumb on his iPhone. When he wasn’t “talking,” his hand was over his mouth, shoulders shaking in silent laughter. We discovered our tuxedo cats, Charlie and Lizzie, must have been separated at birth because they’re practically twins. Tomorrow was his 29th anniversary with Janet. He was genuinely happy – no, he was brimming with joy – just as caught up as I was in the enchanted energy of the evening, watching the beautiful souls swirling around us who’d endured so much heartache that could have stolen their spirit. And still, there they were laughing, hugging, taking photos, connecting.
“I don’t want it to end!” he typed to me at close to 1am.
|Our AWESOME Table #28! Arty & me (with our uber-important thumbs) in front. ALS warrior Rob behind Arty.|
My FB newsfeed is totally schizophrenic these days.
One post from an ALS group reads: “My sister has stopped wearing her bipap because it dries out her mouth. We’ve adjusted the humidity and used biotene before she puts it on but nothing seems to help. The strap they gave us to help keep her mouth closed doesn’t work. Any suggestions?”
Next, a post from Swim Bike Mom’s triathlon group, the Tri-Fecta, reads: “Anyone have a Specialized Alias bike? Thinking of getting one. What do you think? Which model do you have? TIA”
It’s wacky. I have thought about dropping out of the Tri-Fecta – what do I care about wetsuits, aero position, or new sneakers these days? But I haven’t because I still consider myself a triathlete and I’ve made friends in the Tri-Fecta who have supported me since my diagnosis who I like to keep up with.
Then the Tri-Fecta came through for me in a way I never expected.
When Meredith Atwood, the SBM herself, approached me with her idea to do a “virtual race” honoring me and benefiting ALS, my eyes bugged out. My idol, my triathaHERO since 2013 when I listened to her book on repeat all summer leading up to the 70.3 said what the what?? I had no idea what a virtual race was but of course I said yes.
I loved reading the posts roll in over the weekend. There were my sweet friends and Team Drea members with their families, all who have become like family to me – they’ve already done so much for this cause, for me, and yet were back out there again, smiling and appreciating. Then there was the Tri-Fecta – more or less complete strangers out there doing the same for some woman they’d never met for a cause they likely didn’t have a personal connection with. But they got it.
So I implore you to ask yourself the question: “what else can I do?”
"Mo…Ciushla"…(pulse of our hearts)…(Andrea, "poet" and Jon "poet-spirit")…let us join in "the good fight"…believe in FREEDOM…(from ALS)…so all shall live…G-D bless…"Remember, Pick a stronger word than Hope…Cure", -blazeman…bmom and bdad…Jon's mom and dad.
Andrea…we love your spirit…it reminds us of Jon…you have the same thoughts and feelings he had…we are blessed to know you…keep making those positive memories!
truly beautiful! Thank you for writing this Andrea! It was a complete honor to meet David and you last month. much love – Rob
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