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Major Taylor Journal: My cycling comeback story

Desiree Peterkin rode almost every day until she was diagnosed with a rare disease. After that, cycling became the focus of her comeback.

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Named for Marshall ‘Major’ Taylor, the country’s first Black cycling champion, and the U.S. Army’s 25th Infantry Bicycle Corps, an all-Black unit known as the ‘Iron Riders,’ the Major Taylor Iron Riders club of New York City is comprised largely of Black, Latino, and Asian-American riders. We are honored to share their thoughts in a regular column series on velonews.com in the coming months.  

I had no idea that a spin class would fill a void that had suddenly entered my life — but it did. There I was at the REV cycle studio in Baltimore, in 2017, sitting in the back of the class in a dark room. I weighed 260 pounds, I did not fit any of my old cycling apparel, and I waddled. I sat on the last bike in the last row next to the corner of the wall — out of sight!

The first few months were a joke. I struggled to turn the pedals over, and getting out of the saddle — let alone moving between the positions — simply didn’t happen. I just didn’t have the energy. But I continued to show up at 6 a.m., and I got stronger and gained confidence as time went on. I started moving down the rows in spin class, but I still chose the bike near the wall. Before I knew it, I was spinning in the front row, dead center.

My instructor, Esther Collinetti, was dope. Every class Esther was dropping knowledge on us that made me feel like she was talking directly to me. My progression didn’t go unnoticed, and Esther would find ways to compliment me and motivate me during class.

So, one day I shared my situation with her. I told her how I used to be an athlete and a dedicated cyclist, and that I rode hundreds of miles each year. And then, one day, I was diagnosed with the autoimmune disease Sjögren’s Syndrome. And that sent my life on a challenging path.

Life-changing diagnosis

The author on one of her last big training rides before her 2016 diagnosis. Photo: Desiree Peterkin

Imagine this scenario: You wake up early every day, do your workout, go to work, ride your bike a couple of times a week, hang out with friends, referee a couple of NCAA Division 1 women’s basketball games a week, rinse and repeat. Then, one day, you start to recognize hiccups in your ability to walk straight and sustain balance. You struggle with sunlight and fatigue. When you try to do a 30-mile bike ride, it feels like Shaquille O’Neal is pushing down on you.

That was what happened to me. In 2016 I noticed something was not right, so I started journaling about my symptoms like disorientation, fatigue, light sensitivity, and weakness. Things got serious during a group ride on July 27, 2016 — and I remember it like it was yesterday. I was doing our regular route and I struggled to keep up. A friend of mine whizzed by me and I was like, “Oh hell nah, he does not pass me!” Then, other people passed me, and I couldn’t catch my breath, no matter how slow I kept pedaling. I pulled over and sat down, and realized that something was up. I decided it was best to head back. That was a slow roll home.

Cycling has been a major part of the author’s life as an adult. Photo: Desiree Peterkin

On September 26 my life changed drastically when I was admitted to the emergency room at Johns Hopkins University. After 11 days, four lumbar punctures, daily visits from a team of therapists, I was finally diagnosed with Sjögren’s Syndrome with neurological manifestations. I had always feared getting this, because my mom had lived with it for over 30 years. I saw the struggles she went through with it. Muscular Dystrophy also runs in my family. In some ways, I was just waiting for this to drop on me, and boy did it.

The diagnosis took a lot out of me, and the disease stunted my life mentally and physically for years. I had to relearn to walk and talk. Depression set in quickly. I was at the hospital all of the time.

And throughout that time, I missed cycling so bad. I could barely walk or talk, yet I only wanted to ride my bicycle. Throughout the whole experience, the only thing that was on. my mind was riding a bike.

I realized what a freeing outlet cycling had been, and I missed it. My bike hung on the wall in my house, and I saw it every damned day. I touched it every day. I even talked to my bike. My mom, who lived with me for two months, would console me. I would look out the window and see people riding their bikes, and I would get emotional.

I realized that we cyclists are a different breed. We dress up in what we think are fashionable outfits to ride endlessly and aimlessly, climbing and panting like it is the end of the world. When we get done, we are happy because we did it together, and it wasn’t that bad!

My aunt and uncle on my mother’s side never got to ride because of their muscular dystrophy. When I am riding, I channel Michael (my right leg) and Lorna (my left leg).

The comeback

The author after completing her first 10-mile ride in 2018. Photo: Desiree Peterkin

My chiropractor was the first person to encourage me to ride again. My mom was my biggest cheerleader. Rest, therapy, spin class, repeat. I just kept trucking along. During my comeback, I started a cycling club called the Velo City Riders, a Major Taylor associated club, with some friends. I would show up to the ride to greet everyone, and then get in my truck to go home. I missed the camaraderie.

In June of 2018 something inside of me told me to take my bike to the shop for a tune-up. I took the bike for a test ride in the parking lot and it was euphoric. I was grinning from ear to ear. Riding my bike in that parking lot was amazing. I got in touch with a cycling buddy and we did the BWI airport loop, about 10 miles. It was euphoric. When we got back, the club was suiting up for the ride. They saw me on the bike and reveled in the excitement, even though I knew I had a long way to go to get back.

The author out enjoying a ride in 2021. Photo: Desiree Peterkin

After that, all I wanted to do was ride my bike again. I was fat, slow, and uncoordinated, but happy as hell. The process for my comeback was slow, and I was totally OK with it. I just relished in every moment that I could ride.

I always loved riding my bike ever since I was a little kid growing up on Long Island. I remember my first road ride with an uncle of mine. I was hooked. After almost losing cycling, it lit a fire in me. My friends and family know that I love cycling, and I ride all the time, both indoors and outdoors. Cycling has introduced me to so many people. Today, I support as many clubs as I can by participating in their rides. I also pay it forward. When I meet new cyclists, I share what I know.

I am not an expert by any stretch of the imagination, but my love for cycling is contagious.