Sometimes things don’t go exactly as planned.
For example, I had been planning on blogging often during Make Your Mark: MSA Awareness Tour 2014, but this is my first post in nearly a month. That’s in part because I didn’t take a computer with me on the tour because we ended up not having a support driver and because, well, I was just so spent at the end of most days.
Having to carry things with us on our bikes slowed us down considerably. A couple of wrong turns didn’t help things. There also was a semi-emergency stop in DeMotte, Ind., on just the second morning to have an infection on my right knee treated at a CVS MinuteClinic. (No, the bandage I wore for the entire trip was not from a cycling injury. An insect bite from a few days earlier somehow turned into cellulitis.) We also encountered severe thunderstorms on Day 4 that forced us off the road three times, a hilly road in Southeastern Ohio torn to gravel by heavy trucks supporting an oil and gas boom, plenty of headwinds and a couple of uncomfortably warm and humid days — par for the course in the middle of summer.
We did cheat a bit. We cut out a planned stop in Celina, Ohio, because it made more sense to ride through Muncie, Ind., than to head due east from Kokomo, Ind. Instead of riding through Western Maryland to meet up with other riders in Hagerstown, Md., on July 12, we rerouted to Pittsburgh, rented a car, then drove to Hagerstown, with an overnight stop in Morgantown, W. Va. We still clocked 727 miles (1,170 km), and had some incredible experiences along the way. I’d call that a success.
The medical issue, plus a road turning into a freeway — no bikes allowed — meant that we didn’t make it to Kokomo the second night. Instead, we backtracked a bit and found a place to stay in the town of Logansport, about 30 miles to the north. It was there that we first realized that the trip was as meaningful as we hoped it would be.
We got Room 117 at our hotel that night. My dad’s birthday was January 17.
Yeah, he was with us. We felt energized and inspired after a very long, tiring day.
When we finally got to Kokomo the next morning, we felt obliged to take a selfie at the city limits. We earned it.
Then, what was supposed to have been dinner the night before turned into brunch with three people affected by MSA: Chris Markiewicz, who has been fighting the disease for a remarkable 11 years — and still speaks pretty clearly and walks without assistance—plus Renate Sharp and Francie Hutton, who both lost their husbands to MSA. They were wonderful hosts and a great support network for each other. Importantly, it was the first time my Uncle Malcolm had met others t0uched by this horrible illness. It was another sign that we were not alone on this journey.
We met some great people along the way. Two days after Kokomo, as we were headed to the Dayton suburb of Kettering, Ohio, we stopped for lunch in the tiny town of Eldorado, Ohio, population 505. The only restaurant in town was Suds, a prototypical dive bar that happened to have very good food. There were just two other patrons in the bar, local farmers named John and Gary. We told them why we were passing through town, and explained what MSA is. They were so touched by our story that John gave us $10 and Gary $20 as they left. Those are small donations in the grand scheme of things, but for farmers in rural Ohio, that may have been a lot of money. What a kind gesture.
Later, as the skies opened up for the third time that afternoon, we ducked behind a shed to shelter ourselves from the wind, if not the rain. Well, the family inside the adjacent house saw us, opened their garage door and invited us to wait out the storm in their garage. Nearly an hour later, after lightning, hail and perhaps some frogs and vermin too, they wouldn’t let us go without offering us some water and Gatorade to take with us.
That evening, we got to Kettering hours behind schedule, but no matter. Frank and Susan Cervone were still there, at La Rosa’s restaurant, with friends and family, where they raised about $800 for the MSA research lab of Dr. Charles Ide at Western Michigan University. We helped draw raffle prizes, and were featured on the local news in Dayton. One of the raffle winners gave us part of her prize, a free night at a local hotel. It was much appreciated, and again highlighted the generosity and kindness of so many people we encountered along the way.
One night later, Frank Cervone had to go to the emergency room due to dizziness, one of many symptoms MSA patients have to deal with. This disease is not a laughing matter.
Hours before Frank was hospitalized, we rode into Columbus, again way behind schedule, but to a rousing welcome on the patio of Logan’s Roadhouse for an event hosted by Cathy and Marv Rapenport and Multiple System Atrophy Coalition board member Judy Biedenharn. Judy is another MSA widow, and Marv is dealing with MSA right now; in fact, he wasn’t feeling so great, and went home before we got there, but Cathy was gracious enough to invite us to stay over with her that night, so we were able to meet Marv. That event brought in $778, as Logan’s donated 20 percent of the checks of everyone in the party, including one woman who had lost her husband to MSA just three weeks earlier.
Two days later, we had planned on stopping at the home of MSA patient Scott Greenlee and his wife, Lori, in St. Clairsville, around lunchtime. But we took a wrong turn and ended up on a hilly, gravelly nightmare known as Oxford Road. That misadventure cost us at least two hours, probably more. We were not happy when we got to the end of it.
The weather got hot. We got tired and hungry. We kept slowing down. We eventually made it to St. Clairsville an hour before sunset, where Lori Greenlee was waiting for us on the corner with a welcoming sign, and a whole lot of hospitality.
She invited us for dinner. Then she invited us to stay over. More importantly, she introduced us to Scott, who hasn’t wanted to leave the house as his motor skills have declined due to MSA. He still walks on his own, but stairs are tricky, and his speech is slurred, just like my dad’s was. He can’t work anymore, and can’t enjoy his art hobby. It’s so sad to watch, but I think the Greenlees were genuinely uplifted by meeting others who understand exactly what they are going through.
No, I’m absolutely certain they were uplifted by our visit. A couple days after I got home to Chicago, a package arrived in the mail. It was a printed copy of an article about the tour (with the above photo) in the St. Clairsville Times Leader, as well as a special surprise: one of Scott’s paintings. (Malcolm got a similar package the same day.) What an awesome gesture. I can’t tell you how touched I was, and honored to call Scott and Lori my friends.
After our roundabout trip to Pittsburgh and drive to Hagerstown, we met up with some other riders for the final full day, including my brother, David. Davi Cohen’s cousin out in Arizona is declining rapidly from MSA, so she and her husband Rich, an incredible cyclist even at age 71, drove down from New Jersey to Rich could ride with us. Thanks also to Mike Guerrieri, whose mother died from MSA in 2011, and his friend Richard. (Check out the song Mike wrote in memory of his mom.)
The temperature soared to close to 95 degrees Fahrenheit, with a dangerous heat index of 105 on that Sunday afternoon, July 13, so two riders didn’t finish. There’s no sense in pushing it when you get overheated. Again, this time due to the heat and despite the fact that we had drivers to carry our bags for the first time on the whole tour, we were slower than I had hoped, but we got to my mom’s house in Rockville, Md., where close to 40 people were waiting to welcome us to the Washington area.
The crowd included new MSA Coalition board member Philip Fortier (below, left) and MSA New Jersey founder Cynthia Roemer (below, right). Philip brought Tim’s Shoe, an important symbol of MSA awareness. (I’ll post a video explanation of that later.)
We barely had time to recover before we had to be up at dawn the next morning to ride the final 23 miles to Capitol Hill in order to meet the Dysautonomia International bus, which brought dozens of people downtown from the group’s annual meeting near Dulles International Airport to lobby members of Congress. We celebrated with a victory shot on the steps of the Capitol.
It doesn’t matter how tired you are. The bike feels light at this point.
I’d be remiss if I didn’t thank our sponsors: Nestlé Waters North America, MapMyRide and Sportique Brands. (After all that riding, I had no saddle sores, thanks to Sportique’s Century Riding Cream. The joint & muscle gel, lip balm and foot spray came in handy as well.) You can check our routes on my personal MapMyRide page, and I’ll try to share them on the tour site when I get a chance. I’m far behind on my regular work as it is. :)
Also, thank you to everyone who donated in support of the tour. To date, we have raised about $9,000, including from the events in Columbus and Kettering, from money given to us along the way (my stepniece collected $19 from partygoers at my mom’s house), from checks sent directly to the MSA Coalition and from our Crowdrise page.
If you would like to donate, please visit the Crowdrise page, or send a check, made payable to the Multiple System Atrophy Coalition, to: 9935-D Rea Road #212, Charlotte, NC 28277. Please write “MSA bike tour” in the subject line.
Will we do it again next year? Stay tuned. If we do, we will stretch it out over at least a couple more days.