Jen Horonjeff decided to celebrate what she calls “the hardest six years of my life” (the time she spent working toward her PhD) with a bike ride – a 1,400-mile, 20-day ride on a tandem bicycle with her fiancé Keegan Stephan. “I called it my PhD honeymoon,” says Horonjeff, who was diagnosed with juvenile idiopathic arthritis (JIA) when she was 11 months old.
The pair traveled from New York City down the Eastern seaboard to the Juvenile Arthritis Conference in Orlando, Florida, where Horonjeff presented research based on the doctoral dissertation she’d just completed. Appropriately, the study highlighted the importance of physical activity for the development of strength, coordination and other motor skills for kids with JIA.
Like her bike ride, which included many stops to meet with children with JIA and their families, her graduate studies combined her love of biomechanics with her desire to help others (read more about their ride on her blog). Before she could start the highly specialized program in kinesiology and ergonomics at New York University in New York City, however, she needed to pass an unexpected medical hurdle – one of many she’s crossed in her life with arthritis.
A few weeks before her program began she went to an emergency department for what she thought was a bad flare of uveitis. A brain scan revealed the severe headache and facial pain wasn’t caused by the inflammatory eye complication of JIA as she’d thought, but by a new problem: a benign tumor on her pituitary gland.
Her doctors advised “watchful waiting,” and undeterred, she began her graduate work. She had reason to be confident in her abilities.
As an undergraduate at University of California, Irvine, she studied dance and biomechanical engineering, graduating early despite having to withdraw for a time after fatigue and flares made study impossible. Then she spent four years in New York working as a modern dancer and certified Pilates instructor before deciding to earn an advanced degree.
“My passion is helping people, and I wanted to combine that with my of love engineering and biomechanics to help people move more efficiently and be pain free,” says Horonjeff, now 31 and an independent consultant in ergonomics in New York City, where she helps people set up their living and working spaces to promote healthy biomechanics.
Battling Flares, Infections
During her pursuit of her PhD, Horonjeff would experience her “worst arthritis flare ever,” in 2011, and in 2013 undergo brain surgery after the tumor, quiet for four years, began to grow quickly, causing debilitating headaches. It was successful and she recovered well, but repeated infections related to arthritis medications that suppressed her immune system meant even more time away from study.
“I had so many fungal infections the doctors eventually tested me for plague, Legionnaires’ disease and HIV,” she says. (She was negative.) “If my joints weren’t flaring, I was just getting sick all the time.”
Her graduate advisors were “sympathetic, but at the same time didn’t really get it,” she says, noting the PhD process is different from undergraduate work – self-directed, but also requiring the student’s and advisors’ schedules to mesh, something that didn’t always happen for her. For the driven Horonjeff, the progress she considered slow was a source of worry and frustration.
“Over the years, I’ve come to terms with understanding that I work on a different timeline, but you can still start to beat yourself up. It was just very difficult,” she says.
Her greatest source of strength was her circle of friends with arthritis.
“These people, who have been through the same kind of experiences, can empathize in a different way,” she says. “They grounded me and got me through. I could text or call during any of the crazy situations I found myself in, and they could understand.”
Many are friends she made through Arthritis Foundation events she attended during her childhood in California. “Those relationships are profound and have stuck with me – to this day they are some of my very best friends,” she says.
A Family Crisis
In December 2014, as Horonjeff worked to finish her dissertation, her grandmother and grandfather in Alpharetta, Georgia, suffered strokes within weeks of each other. She has a special bond with both.
“My dad’s parents died before I was born, so they are the only grandparents I’ve ever known. I’ve always been close to my grandmother – she has severe rheumatoid arthritis and feels I understand her,” says Horonjeff. “My grandfather is the only other person in our family to complete a PhD – he served as my inspiration and motivation that I could also do this.”
Horonjeff flew to Georgia to care for her grandparents. In the evening, when her grandfather experienced “sundowning,” confusion that can affect elderly patients, she read to him.
“I kept him calm by reading him his own dissertation, which was published as a book – his PhD was in European history,” she says. “He held onto his every word, it was magical. That first night I finished reading to him he teared up and started clapping and told me how wonderfully I read it.”
Her grandparents improved, and she returned to New York, graduating the following spring. Her grandparents couldn’t make the trip, but she returned briefly to Georgia just before the ceremony so they could hug her in her graduation robes.
In December 2015, Horonjeff and Stephan will marry in her grandparent’s church, where her grandfather, a preacher before he was college professor, has married most of her family members. “Our wedding day will be my grandparent’s fifty-fifth anniversary, and though my grandfather isn’t well enough to officiate, he and my grandmother will be there,” she says.
The church will be filled with roses, the flower her grandfather has given his wife every year for their anniversary.