From Sea to Shining Sea: MS Bikeathon Raises Money and People’s Spirits
January 4, 2019
“I feel like this affects everybody,” says Brian Joseph of Buffalo, NY. “It seems like everyone I talk to knows someone who has MS, a family member, brother, sister, cousin, or even a college friend.”
Joseph’s experience in this case isn’t unique. It doesn’t matter who you are or where you come from. Whether you live on one of the coasts, in the heartland of the US, or along the southern border, chances are you know someone personally who has Multiple Sclerosis or you have a friend or family member who does. How people deal with this disorder that effects so many, that varies widely.
For Joseph, he’s dealing with it by biking across the United States.
He’s biked for other causes in the past, including cancer research. This is more immediate though. Joseph’s aunt died from complications due to Multiple Sclerosis, or MS, and his uncle, who’s been diagnosed with the disorder for several years, has more recently taken a turn for the worse. So Joseph felt like now it was time to do something more.
He quit his job so he could do the full 69-day fundraising journey.
Joseph’s not the only one giving time, energy, and heart to battle the potentially crippling disease. Joseph is one of 17 riders making their way across the country to raise awareness and funds for MS. It’s 4,295 miles from the coast of Bar Harbor, ME to the coast of Seattle, WA. That’s a long enough trip by plane, and this team is doing it by bike. It’s a rough but beautiful journey where they meet people of all walks of life, eat dinner on the road, and camp at night along the way, or maybe if they’re lucky sleep in the occasional hostel.
The goal of each cyclist is to raise $1 per mile. They’re joined by segment riders who cycle in for anywhere from one to three days or more of the journey. Everyone does what they can.
Most of the core group of riders met for the first time in person in Maine. They vary in age from 21 to 66 and come from different walks a life – a college ballplayer, an IT network administrator, a chemical sales rep, a retired business owner, and so on. Some are biking for the first time. For others this is the fifth year they’ve slapped on helmets and spandex to support the cause.
Some of the riders have immediate personal connections and for others, like Amanda Piorkowski their connection is an advocate on the team. Piorkowski supported Bike The US for MS last year as an intern, and this year she’s joining them as a route leader.
“I just heard all the awesome stories about the trip,” Piorkowski recalled, “and I wanted to come back to be a part of something just really important, you know.”
For those who don’t know, MS is a degenerative disorder. Doctors don’t know exactly what causes the body’s immune system to attack the fatty myelin sheath necessary for nerves to send signals across the brain and body. They also don’t have a cure for the over 400,000 Americans who slowly lose the ability to walk, use their limbs, and take care of themselves. Eventually, MS can cause complications so severe they result in death. That creates a sense of urgency for the many organizations that strive to support finding a cure.
Bike The US for MS raises funds for MS treatment and research through a variety of cross-country cycling trips. With multiple short and long routes, they raise money and give participants the chance to explore parts of the US they’ve never been to, as well as discover a new community.
“There’s four of us that did the Trans-Am (Trans- America Route) from New York down Virginia to San Francisco in 2015 that are back together for this one,” Said Bob Smith, who’s retired and a great grandfather. “And then meeting new people who we’ll know for the rest of our lives. It’s amazing.”
For some there’s also no better way to get to know the beauty of America than at 12–15 miles per hour. It’s an opportunity to see things in a way that they would have never seen them before.
“I had no idea how beautiful this part of the country was,” says Richard Ellis from San Antonio Texas, a smile suddenly breaking the seriousness of his face as he paused from tossing grass seeding on a patchwork lawn. It’s another aspect of what they’re doing which we’ll get to momentarily.
“Seeing the country from the seat of a bike rather than a car or flying in on an airplane, you see quite bit. That’s one of the greatest parts.”
Angel Kowalski from Columbus, OH agrees. The 54-year-old joined the team this year as a segment rider. He drove up to bike with the team for three days. This isn’t his first ride. He’s biked to raise money for other groups, like the American Cancer Society, but pushed himself even further for MS
“Last year I did the southern tier from San Diego, CA to Saint Augustine, FL.”
There are a variety of different trips available for anyone interested. However, even for veterans of the cause there’s something different about this trip.
Every week or so the team gets one to two rest days. It’s a much-needed respite from cycling 60-75 miles per day in rain or shine. But today wasn’t a normal rest day. Instead of calling home, sightseeing, or just catching a few extra hours of sleep, the team was pulling up old carpeting, tossing mulch, re-seeding a lawn, and doing a host of home improvements at a home for three ladies who live with MS. They get around in wheel chairs, so this isn’t work they could do for themselves.
For the volunteer cyclists it was a way of immediately doing some good for a few people with MS.
“It’s a lot of fun. It’s better than working,” offers Kurt Rishel, taking a brief break from the yardwork.
Rishel just wanted to bike across the country. It’s hard to believe it’s “just” about riding bikes when Rishel, who is also a board member, has biked for the past 5 years and is doing so again in spite of blowing out his knee 8 months ago and recently having surgery to repair it.
On June 14, 2017, the team got off their bikes and split into two work groups to do some hands-on community service. One of the groups went to a property owned by North Coast Community Homes. It’s a quaint house on a cul-de-sac that is shared by three lovely ladies with MS: Mary Namy, Rosemarie Burns, and Jodi Robbins. Thanks to a variety of modifications including ramps, widened doors, lowered counters, and ceiling track lifts, they’ve been able to live independently with some occasional help from home health aides. Each of them had lived in nursing homes. For women who crave independence, having a home where they can prepare their own meals and do their own laundry is a dream come true. Not only does it give them more freedom and joy, it’s far less costly than living in a nursing home.
“When I moved in here, I felt like I won the lottery” Said Burns, still beaming with joy over one year later. She’d still be in a nursing home if it wasn’t for North Coast Community Homes, a nonprofit which owns and manages over 200 properties for adults with developmental disabilities, mental illness, and other disabilities so they can live more independent lives. The Euclid home was specially designed and customized to meet the needs of adults who have MS, and is believed to be one of a handful in the country in that regard.
Without the good work NCCH does, many of their more than 700 residents would still be in nursing homes, other institutional settings, or even on the streets. It’s a lot of work for the very dynamic but relatively small NCCH team. Having the volunteers from Bike The US for MS has been a help.
“Everything’s a process – just to get all this done, it would take a hours,” notes John Urban, one of the maintenance team members from NCCH. “It’s great to have all these extra hands.”
The cycling team worked with maintenance crews to pull up carpeting and scrub floors so new laminate flooring could be installed in the living room. Not only will the new floor be more attractive, but it’ll be easier for the ladies to get around in their wheelchairs, plus it’s easier to clean.
Afterward, they moved into the back yard, working hard under a hot sun to re-seed areas of the lawn that had become sparse, and to lay mulch for existing and newly created flower beds.
“Now if only I could get my chair out there where I could see it better,” said Namy, who’s been in the house two years and in spite of her difficulty getting around, also volunteers her time as an advocate and educator on MS.
For some of the cyclists this was an up close and personal opportunity to interact and do some immediate good for people living with the disease. That’s important, because for all of them this has been more than just a trip across the US, it’s been an opportunity to contribute to something bigger.
Pamela Farrington took a break from sweeping up dust and foam remnants from the recently removed carpet padding to share a thought.
“I’ve wanted to do something challenging and I wanted to go across the country, and all the other rides just weren’t me. Like, I wanted to do some kind of volunteer aspect. And so the other rides were like 20 (mile) runs and sleep in wineries,” Farrington laughs. “It sounds nice, but that’s not really what I wanted. That’s not me.”
Farrington also has a personal connection to MS.
“I had a college friend. She announced that she had MS on Facebook. We were pretty close in college. It was pretty rapid. It was like ten years of just like ‘Oh, I’m fine.’ And then with a cane and then with a wheel chair. And now she can’t move. It’s really scary.”
In spite of the work, the sweat, the efforts, or maybe because of them, they’re doing something really good. It’s the sweat of their brow and a sacrifice of money and time.
First-timer Eric Eldred stands in the open bed of a pick up on top of a pile of mulch. He uses a pitchfork to fill wheelbarrows for other team members. As a rising senior at Case Western Reserve University (CWRU), he gave up his opportunity to work or just relax during his final summer as a student so that he could do something for a cause bigger than him.
Eldred played baseball at CWRU, which has helped him with the physical part of the trip, but he’s never been a cyclist
“I had to go out and buy a bike just for this.”
It seems like such a small thing. They bike. They lend a hand here and there when they can, when they should be resting. But the impact of each of these small gestures changes the landscapes of the hearts of those they meet along the way.
“It makes me feel good inside. You see so much negativity on the news, and it’s just great to be looking out the window and seeing all these people helping,” said Sharon Traver, mother of one of the residents of the home.
“When I see them doing all this, it just restores my faith in humanity.”