Tuesday, December 1, 2015

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.]

ALS.net & the White Coat Affair

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.
ALS.net ambassadors: Teresa, Beth, me. LOVE THESE LADIES!!
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.
Our AWESOME Table #28! Arty & me (with our uber-important thumbs) in front. ALS warrior Rob behind Arty.

Be Brave, Be Thankful

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.

Photo credit: PopSugar
Brave, yep. Thankful, you betcha.

***

Transcript of my "3 minute" speech

Before I was diagnosed with ALS, I was the senior program manager for a nonprofit focused on sustainability. We preached the message that our communities should strive to meet the current needs of our planet, while leaving it better for our children and future generations.

Now that children are no longer feasible for me – my husband and I don’t even qualify to adopt a starving child from a slum in India – my life’s mission to leave our world better for future generations of ALS patients. 

I was diagnosed in 2014 at the height of the Ice Bucket Challenge, so I have never known ALS without hope. Pat, Pete, and countless others paved that way for me.

And so I asked: “what can I do?”

I’m a half Ironman triathlete and marathoner and those activities have taught me a lot about life, including being grateful for what the human body can do. So this year, I challenged my friends and family to take on a race that represented a challenge to them and to use it as an opportunity to raise money for ALS research. We have everything from my 70-year-old mother who ran her first 5k -- to me. Two weeks ago, on my recumbent tricycle, I completed another marathon.

But my wallet and my network of friends are only so large. In looking around I asked “what else can I do?”, I realized that a valuable gift I can contribute is my body to advancing the cause of ALS research is what I can do to help future generations with this disease. So that eventually, there are no more generations with this disease.

That’s why I'm here with ALS.net. Every interaction I’ve had with the staff and everyone associated with this organization has reinforced that they are laser-focused on the cure.

I’m only up here because I haven’t lost my voice or the ability to travel. But I represent a huge community of people who don't have this opportunity. For all of us, I’m doing everything I can, while I can. But unless I’m Stephen Hawking, that won’t be very long.

To be honest – I’m scared. I’m scared for my elderly parents since I’m an only child. I’m scared for my husband who has to watch me decline, and then has to figure out life without me. And I’m scared for myself – I'm scared for the loneliness and the humiliation as I lose my abilities. I really don’t know how to do this, but I am trying to make as many positive memories. While I can. For all of us.

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

Thank you.

4 comments:

  1. "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.

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  2. 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!
    Love,
    Mary Ann,

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  3. 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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  4. I have been suffering from (ALS) disease for the last Three years and had constant pain, especially in my knees. During the first year, I had faith in God that i would be healed someday.This disease started circulating all over my body and i have been taking treatment from my doctor, few weeks ago i was searching on the internet if i could get any information concerning the prevention of this disease, on my search i saw a testimony of someone who has been healed from ALS by this Man Dr Ehi and she also gave the email address of this man and advise we should contact him for any sickness that he would be of help, so i wrote to Dr Ehi telling him about my (ALS) he told me not to worry that i was going to be cured!! hmm i never believed it,, well after all the procedures and remedy given to me by this man few weeks later i started experiencing changes all over me as the Dr Ehi assured me that i have cured, after some time i went to my doctor to confirmed if i have be finally healed behold it was TRUE So friends my advise is if you have such sickness or any other at all you can email Dr Ehi on shomorikaspelltemple@yahoo.com or call him on +2349038669448 I am indeed grateful for the help, i will forever recommend you to my friends!!

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