My Tribes

Now that the tirasemtiv submarine is no longer a threat, I now feel free to write about all the magic* in my life that has exploded into being over the past month.

[*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.

[*Don’t bother getting confused. The ambassador training in Clearwater was completely different. ALS.net operates a nonprofit biotech lab called ALS-TDI in Cambridge, MA which is the only one in the world 100% dedicated to finding a cure and treatment for ALS. You may remember that I was asked to be a Young Faces of ALS ambassador for them back in May, in fact, the day Lisa died.]

 

This training started with the ~15 of us introducing ourselves and the story of our connection to ALS. It took well over an hour, but as the newest members of the group, DP and I were both moved. Each person spoke passionately about their loved one (or themselves) and why they believe ALS.net is the most innovative, cutting-edge, dedicated and promising hope for a cure. They weren’t proselytizing for our sake; they’re smart people who have done their research – otherwise, they wouldn’t spend (/have spent) precious hours left in their loved one’s lives working so doggedly on behalf of the organization.

 

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.

Because of my ALS speak, what would have been a 3-minute speech actually lasted six. Here is the only video that I know of that exists (thanks Katie!). If you’d prefer a shortcut (and because the cell phone audio and my ALS speak are not that clear), I’ve pasted the text at the bottom of this post.

 

I had NO idea that my little speech would have the impact it did. I spent literally the rest of the magical evening having one heartfelt conversation after another with the most resilient, open, loving strangers I’ve ever met in one night. They cried, I cried, we laughed, we hugged, we took photos, we connected.

I think it’s important to explain that, up to this point, I never actually met my best friends with this disease because most of them died long before I got it. I met Darcy Wakefield through her book, Jon Blais through NBC and his parents, even Lisa I only met in person twice. I know her best through the time I’ve spent with her mom and siblings after her passing. So to be in the presence of real life LIVING people with ALS, all doing amazing, courageous, inspiring things with their lives to raise awareness and money to find a cure…that was when I knew I’d found my ALS tribe.

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.

Me neither. Ever.

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.

The Be Brave Be Thankful virtual race turned out to mean that anyone, anywhere could sign up to run any distance over the Thanksgiving holiday, email the results (+ photos and why they were thankful, optional) to receive a medal and t-shirt. A portion of the registration fee and any additional donations would go to ALS research. Honestly, I loved the idea even if it didn’t raise much money – encouraging people to take on a physical challenge, or at least get out and be active, and be grateful especially for what their bodies can do – hmm, that felt smackingly familiar. It’s why I created Team Drea in the first place.

 

The event didn’t disappoint. We had the most beautiful Thanksgiving weather I can remember, so my parents, DP, local Team Drea members Sapna and David, and I headed out to the greenway. DP and I took off at our own speeds (expecting everyone else to do the same) but Sapna walked with my mom and David walked with my dad. It was very sweet. I’d expected to go into some nirvana reflective state swept along by my carefully orchestrated playlist, but when an earbud fell out, I heard children shouting and dogs barking nearby and well, I never put it back in. I just rode along happy and thankful that I could.

 

It was the cherry on top – or, I guess this being Thanksgiving – the whipped cream on the pumpkin pie (or my personal equivalent – the stuffing in the mushroom 😉 )

 

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 these are also my tribes. The one I built with my friends and the one that materialized out of the very BEST of the multi-sport community to support one of their own.

Brave, yep. Thankful, you betcha.

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So I implore you to ask yourself the question: “what else can I do?”