This Is My Fight Song
I am supposed to be at Bobby’s soccer game right now - something I rarely if ever miss. But I’m in so much pain today, I opted out. No doubt a big part of that pain is a result of my Parkinson’s climbing class I went to yesterday where I absolutely refused to give up trying to do the same route that an 82 year old gentleman named Erwin easily conquered. I, after three failed different tries, gave up. It has left my arms in agony today even while leaving my heart full.
Here’s 82 year old Erwin, showing off.
The other pain today is no doubt because of my actual Parkinson’s. On any given day, it runs down my right side from my lower back to my foot. It’s a stabbing pain and a dull ache at the same time, and I try not to talk about it too much for fear of giving in and somehow breathing life into it. But today it has rendered me couch bound and full of emotions and so of course I am writing about it because…well it’s what I do.
While I am sitting here feeling a bit defeated, I clicked on the link to watch a screener of a documentary that will soon be released called No Ordinary Campaign. It tells the remarkable, almost incomprehensible story of Brian Wallach and Sandra Abrevaya who founded I AM ALS.
A few years ago, I came across Brian and Sandra’s story. I am not sure how, maybe in a tv segment or online but I was immediately drawn in when I learned that they found out he had ALS on the day they brought home their second daughter from the hospital. He was young (37 years old), motivated, accomplished, connected and living what was surely one of the most exciting times of their lives. None of it mattered when ALS came to find them. Told there was nothing to be done and he should get his affairs in order, they said, “Umm…yeah. Thanks for that offer, but no. We politely decline” and instead they did this:
At at time when NO ONE would fault them for packing it all up and moving to Fiji, they instead advocated for changes in legislation on Capitol Hill, started a nonprofit (which I can tell you from multiple personal experiences is nothing short of Herculean), AND they created a whole company focused on helping other people with ALS, Parkinson’s and Alzheimer’s. They are relentless and in every way, incredible.
Recently, the First Lady hosted a screening of their documentary at the White House and several friends and former colleagues of mine attended. After it ended, more than one of them texted me to say that I had to meet Sandra and that they would connect me. I didn’t wait, I pounced on the opportunity and wrote to Sandra myself. A long, long, meandering and mushy email came pouring out. I told her I had Parkinson’s and I needed to glean everything I could from her about how she was changing the world so I could have just a tiny fraction of their impact.
As I always do, I immediately regretted sending it and waited for either no reply at all, or a brief “Thank you so much. You’ll be receiving a restraining order soon.” Instead, despite being in an epic battle to save her husband’s life, while simultaneously leading a nonprofit, running a start-up, and raising their two little girls, she immediately wrote me back the most lovely response. We met via Zoom shortly thereafter and it turns out she’s also theatre kid who went to a Big Ten powerhouse football school (you’re all laughing at that if you know which one I went to). We are each in our own respective battle with a neurodegenerative disease, and we are both pissed off about it and unwilling to accept the status quo. I’ve known her for less than a month and I’ve already forced her to become one of my best friends (not sure she’d categorize it in that way but it doesn’t matter.) I’ve gone ahead taken the liberty of ordering our broken heart BFF necklaces to give her when we finally meet in person. (Mike just read that and said to himself “Oh my, Allie…too far” but we all know that’s my favorite type of far.)
All joking aside, to say that I am in awe of what she and Brian have accomplished would be an understatement. The company they created is called Synapticure and it is helping people - including those with Parkinson’s - find and connect with incredible doctors who provide comprehensive virtual care including movement disorder neurologists, nutritionists, mental health, physical and occupation therapy and more. In a time when there is a national shortage of movement disorder specialists and a long waiting list to see most, this company will be a game changer for many people living with this disease. I have invited Sandra to do an Insta Live and I can’t wait for you all to meet her and learn more.
Halfway through the documentary, the Rachel Platton song “This Is My Fight Song” came on. I was instantly taken back to 2015. This Sunday marks the 9th anniversary of the passing of one of my besties, Laura Scott. That song came out around the same time and I remember listening to it on repeat as I sobbed in my car sitting by her grave when I went to drop off fresh flowers at the cemetery.
So much has changed since Laura died and I often wonder what she would say about the situation I find myself in now. No doubt she’d have all the right words and never miss an opportunity to show up and be supportive. She’d, without question, bring me the most disgusting healthy foods and force me to walk miles and miles and MILES with her. She’d also likely have some really fun jabs at my expense just like I had at her’s. Like the time her very cute oncology doctor came to chat with us in the hospital waiting room and she immediately turned bright red and giggly. I never let her forget that moment. Most importantly, she’d tell me to keep going. To keep reaching and to keep advocating so that I get to live out the life that she was robbed of. I miss her, every day and I am so proud of the beautiful women her girls have become.
This was one of those weeks where incredible things have been happening and I am excited to share more of that with you soon. But the underpinning of all of those experiences is the fact that my getting Parkinson’s is why they are happening. I can’t tell you how many times people have said to me “well, I am sorry that you had to get Parkinson’s for this opportunity or that meeting” and my instinct is to always say “oh, well, it’s ok.” And really, it’s not ok. It sucks on many different levels - not just for me, but for Mike and the kids and my family who have to bear the worrying weight of what is happening and what is coming.
But the other thing I hear often these days is that I was made for this fight. And while I used to bristle at that notion - like really? I couldn’t have been made for being a Tik Tok dancing queen who goes on extravagant brand trips instead? But now I consider that a massive compliment because if I can have even a fraction of the impact on this disease that people like Brian and Sandra have had on ALS, then I will gladly accept that I was made for this.
So, THIS is my fight song. Parkinson’s is my fight and even though it has kicked my ass (literally) today, I will get back up tomorrow because there is hope out there to be had and people to be inspired by. People like Laura who literally did not quit - not even until the last day of her 38 years on this Earth. And Sandra, and Brian who instead of quietly sitting by, sadly accepting the incredibly unfair hand they have been dealt, are instead reaching out to the people behind them and saying, “we got you.”
On the morning of Laura’s funeral, we drove by the middle school by our house and this was on the front lawn in the snow that had fallen the night before. I think of this every time I drive by that hill and know that it was her way of telling me she’d always be my guardian angel. I like to think of her up there, watching what I am doing, laughing a bit (hopefully), groaning a lot (definitely) but mostly I hope she’s proud of me.
