- Well, hell.
The most emotional part of the Tri-State Trek is on Saturday night. After a picnic dinner at the University of New Haven, everyone gathers for open mic night. Anyone who wants to speak can come up to the microphone and share their story, talk about someone they’ve lost, and describe what the Trek means to them.
I did not plan to speak. After all, we’d just shown up that morning. I would be riding the final 9 miles on Sunday, but didn’t feel that bonded camaraderie that comes with riding (or supporting riders) for 200+ miles over two days.
But as I sat listening to the stories of riders who didn’t feel ready but rode anyway, people that would do anything to feel close their loved ones again, the friendship born of such a physical challenge – I knew once again that this is my tribe. I wanted to say thank you.
Besides, I bargained with myself, who knows if my voice will hold out to speak next year? I spoke at a fundraiser a month ago and it was fine – people even said my voice was stronger than the year before.
I made three critical miscalculations in this reasoning, though: 1) I’d had a glass of wine. It might have given me liquid courage, but alcohol makes my voice much harder to control, 2) At the fundraiser, I’d been introduced so I didn’t have to cover my whole backstory, and 3) I underestimated the electricity of emotion in the air. It was as thick as the humidity. SO many lives upended by this rotten disease – so much longing, frustration, and bittersweet memories. It hit me full force the moment I pushed my walker into the spotlight to speak in front of 200 people.
I got through my backstory okay: diagnosed at 33…Team Drea…still racing…I’ll be the chick in the lime green trike going turtle speed with you tomorrow. But when it came to what I *really* wanted to say – THANK YOU – a lump welled up in my throat, making it impossible to choke the words out.
I started to speak a half dozen times (maybe a dozen), my amplified gulps and strangled breaths booming through the sound system and the night sky as I tried to compose myself. I was humiliated but couldn’t quite give into the tears because then I’d have to live with regret in addition to my embarrassment. Well, hell.
I only managed to get one sentence out…over what seemed like an hour…one quasi-understandable word at a time:
That’s it. That’s all I could manage.
Instinctively, I was mortified by what happened. I know that I’m the least bit nervous or emotional (and I was a lot of both), I’m unintelligible. But I’m proud (maybe too proud) of what I’ve been able to sustain through luck and hard work – my walk, my swimming, my breathing. I am NOT used to ALS winning the battle of wills.
Many kind people came up to me afterwards to and thanked me for speaking. That it was a powerful message, real and raw. Maybe, but I just nodded, afraid I’d start bawling. They understood, all too well.
I woke up Sunday morning feeling calmer, but my confidence was shaken. Why did I think I could keep up with bikes? I was used to runners. What did I know about the hills of Connecticut? Nothing, but it couldn’t be flat considering the rest stop/starting point for the last 9 miles was at the top of a 13% grade hill – the infamous John Street.
Then someone told me that the ALS TDI team, mostly research staff, would ride with me “for safety purposes.” So nice, but I hated the idea that they would have to slow down for me. Why do I keep putting myself in these situations??
Starting out, mercifully, was a lot of downhill and I wanted to buy myself some time for the inevitable uphills to come, so I let the trike GO. I probably topped 35mph. Actually, no one caught me. A couple people said later that I scared them to death. Oops :).
When the inevitable uphills came, Rick aka Hot Pie Guy cruised next to me, blaring music from his portable speaker and encouraging me with “You got this!” Riders took turns in the lead and shouting “Car up!” and “Hole!”, followed by a chorus of cyclists behind me repeating the call.
Anyone who runs with me knows how damn slow I am going up hills. Breathing hard, I kept pushing and praying I had the power to keep grinding it out. I tried to be most grateful in these moments – that I was out here at all, surrounded by my incredible ALS family.
All in all, I managed okay – except for one hill where I just didn’t have the strength. Unbeknownst to me, Val, a scientist at TDI (who also does bike racing), was riding my back tire and managed to catch me AND hand off her bike in one fluid motion and run me the rest of the way up the hill. #impressive
As we approached the final descent into Greenwich, we stopped to wait for Team Niblock. Andrew Niblock, recently diagnosed with ALS at age 41, is the lower school principal at Greenwich Country Day School (watch this profile on Good Morning America). Team Niblock has raised almost $120,000!!!!!!!!! So far.
Andrew and I led the final pack of riders on our trikes, down the hill through the central retail district. We came upon 50+ kids and their parents from GCDS SCREAMING at the tops of their lungs and waving signs like crazy. It could have been a Taylor Swift concert.
Tears sprang to my eyes but I was laughing too hard. Once again, I marveled at how such a devastating disease can produce so many joyful events and memories.
Cruising through the finish line, my Trek family immediately surrounded me – TDI staff, friends new and old, and DP. Always.
There’s a reason it’s dubbed “Trekmas” and why the first three people we saw literally bounced up to us saying, “My favorite weekend of the year is here!” It’s special and there’s nothing else like it.
I can’t wait til next year. I hope you’ll join us.
Next post tomorrow by my friend and TDI staffer, Kate Lockhart. Don’t forget to sign up at the bottom of TeamDrea.org if you want to receive an email when I put up a new post!