A Free Spirit with Juvenile Arthritis: An Interview with Gabi Rojasby Lene Andersen, MSW Patient Advocate
Photo by heir apparent graphics design
Gabi Rojas grew up in the circus, traveling through cities in the US, making friends wherever she went. When her mother changed jobs from being a trapeze artist to a dance instructor in Albuquerque, New Mexico, Gabi went from tumbling to dancing and found her happiness in expressing her thoughts and feelings through movement to music. She became known as The Dancer in school and appeared in talent shows. Until the pain started. Until she was diagnosed with Juvenile Arthritis. Until at 13, she had her first full-blown flare and stopped dancing, stopped walking.
I Wanted to Be Invisible
Gabi's JA started small with pain in her fingers, then it got bigger and added pain in her shoulders, elbows and wrists and at 13, she began to "really understand the nature of my disease" when consumed by a bad flare. "There were times where I couldn't walk, I needed help with brushing my hair and I had trouble sleeping. My mother heated blankets throughout the night to help my joints because they were so stiff." During this time, Gabi tried a lot of different medications that either didn't work or give her bad side effects, like losing her hair.
She considers herself lucky that she went to a school with a disability center that enabled her to get "extra help, like a laptop, help with walking down the hall." She "had to learn to process differently in class, because I couldn't take notes" and there were times where she went to school in a wheelchair. There were also times when she was isolated at home - "being still was terrible for me and I bottled up a lot of feelings."
Becoming someone other than The Dancer changed the social aspect of school. "People distanced themselves from me" and she spent her time at home listening to music. Sade was a particular inspiration because of "the beauty of her voice that had a sadness in it. I cried a lot during that time and was very depressed." Gabi shared a story about creating a chart where she logged the number of times she cried in a day as she tried to cry less.
Gabi describes herself pre-JA as "very physical, with high energy, a free spirit." During her JA flare, she "wanted to be invisible."
At 16, her mother brought Gabi to a new rheumatologist who prescribed Enbrel "and that was the change." She started the new medication just before going to a marine biology summer camp in San Diego and by the end of the summer, she started feeling strong again. In her junior year, she joined the dance team and by the time she was a senior, she became the dance captain, working on routines after school. She won a dance scholarship to college and after she graduated, auditioned for So You Think You Can Dance and got great feedback from the judges. She didn't make it to the final 20, but got a job with the the Cleo Parker Robinson Dance company in Denver. Unfortunately, earlier this year she injured her back and had to stop dancing while she heals.
I Want to Give Back
Gabi is still on Enbrel and says she "feel[s] almost fully healthy, although weather changes gives me some aches and pains." She is currently taking some time to heal her injury and is doing a lot of thinking. "I've been ignoring RA to do dance and I want to get healthy, I'm tired of beating up my body."
The time between days 13 and 17 are an important part of developing socially and Gabi feels that there is "a big gap" because she spent those years fighting JA. She describes herself as in some ways feeling older than her contemporaries due to learning to process pain and challenges, but young in other ways. Her illness has had ripples and she still has "a lot of social anxiety, I don't know what to say." To challenge herself, she's purchased a copy of the book The Art of Mingling and got a job bartending to get "a bit more socially equipped."
Gabi still feels "a disconnect, a dichotomy like I am part free spirit, part cautious" and wants to get more in touch with the free spirit part of herself. She is considering letting go of dance for a while to go back to school for a degree in physical or occupational therapy because she "wants to give back, be more involved. I've pushed it so much aside to have a 'normal' life and now I want to embrace it all."
We wish you the best of luck in your journey, Gabi!
Lene is the author of the award-winning blog The Seated View.