“Why don’t you bike to next year’s conference?”
This was a comment from a mother to Jen Horonjeff at the 2014 juvenile arthritis (JA) conference. Never one to say no to a challenge, Jen — who has JA herself — and her partner, Keegan, decided to do just that and use the ride to raise awareness of the disease, as well as funds for The Arthritis Foundation. I spoke to Jen a few days ago, when they had stopped in Darien, GA, for the night.
30 years with JA
“I’m celebrating my 30th anniversary with JA,” Jen told me. Considering she is 31 years old, that’s a significant anniversary. Currently, her JA is largely well-controlled, although she still has active disease.
Jen is a busy woman. A few months ago, she finished her PhD in ergonomics and biomechanics. Living with JA has influenced her career in many ways. One of these was the topic of her dissertation, research on physical activity and JA, and the factors that are associated with engaging — or not — in physical activity.
Jen believes staying active is important. “In the past, the opinion was that kids with JA shouldn’t be physically active,” she said. However, her family was quite active when she was growing up and she attributes her level of ability to “my activity and good treatment.” She has been a professional dancer and is now a Pilates instructor, as well as an ergonomics consultant. “I help people with physical limitations do what they want,” Jen told me, and she is passionate about this.
She is also passionate about JA and is very involved with The Arthritis Foundation’s JA initiatives. In addition to being involved with the JA Conference for the past 12 years, “I am the lead on the Arthritis Foundation’s young adult initiative. The transition from pediatric to adult medicine is very challenging.” Jen went on to say that “the young adults initiatives are my wheelhouse, that was the age I engaged with a lot of people with arthritis.”
Riding from NYC to FL
“I took a liking to biking and have biked all my life,” Jen explained. She went to college in California and used a bike as a tool to get where she needed to go. “When I moved to New York, it became a way to commute. When I met my partner Keegan, who is an avid cyclist, it bumped it up a notch. His love for biking made me more secure and he’s helped me flourish with it.”
Having taken several bike trips, both Jen and Keegan were excited about the challenge of riding from New York City to Florida. “We made it public late — I was scared to get myself and others pumped up in case I flared and couldn’t do it.” Still, they prepared mentally and physically for the ride, planning the 1,400 mile journey.
Jen put out a call on social media asking for people who could host them every night and the response was overwhelming. “The magnitude of people interested is amazing; it captures the JA community,” Jen said. She told me of messages from families with JA kids, telling her and Keegan what the ride means to them. “It brings tears to my eyes; it’s profound.”
Many people assume the pair has a support vehicle. “It’s just us and the cars,” Jen said. “Keegan is the expert bike mechanic, he fixes our flats.”
Impact of the ride
I asked if riding 75-118 miles a day has had an impact in terms of Jen’s JA. “I’ve been doing remarkably well, given the demands of the ride,” she told me. “Yesterday we hit the 1,000-mile mark, and only today did that pure arthritis pain in the left knee truly kick in. But at this point, we have come so far, I really couldn’t imagine aborting the journey. Instead, I just had to be thoughtful about it.” She changes the position of her hands and arms often, does a lot of stretching, and uses ice and NSAIDs when necessary. They are also resting more now as Jen’s body requires. “I’m grateful my body has hung in as it has, I know it can help me complete the challenge I took on, perhaps on its own time, but I’ll do it.”
I asked Jen if she would do this ride again. Without missing a beat, she said, “Absolutely.” Her big takeaway from this experience is wanting to convey what challenging yourself means. “Not everyone can do a bike ride, but what can you do to challenge yourself and feel proud of your accomplishments?”
Jen believes that this ride will have a powerful impact for parents of children with JA, hoping it will show them that “this disease does not have to put a stop on the life that they had or what they want for their child.”
The ride has also had a profound impact on Jen herself. “I really do cherish the opportunity to be able to give back to the community that had such a profound impact on my development and my life trajectory. I’m so happy to be able to pay it forward to the next generation of people who are going to grow up with this disease and hopefully be able to make some impact on how their life develops.”
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Lene writes the award-winning blog The Seated View. She’s the author of Your Life with Rheumatoid Arthritis: Tools for Managing Treatment, Side Effects and Pain and 7 Facets: A Meditation on Pain.
Lene Andersen is the Community Leader for HealthCentral’s RA Community. Lene (pronounced Lena) is an award-winning writer, health and disability advocate, and photographer living in Toronto. She’s written several books, including Your Life with Rheumatoid Arthritis: Tools for Managing Treatment, Side Effects and Pain, and 7 Facets: A Meditation on Pain, as well as the award-winning blog, The Seated View. Follow Lene on Twitter @TheSeatedView and on Facebook. Watch her story on HealthCentral.