Tyler – Age 17
When I was 9, my mom noticed I was walking funny in the morning when I first woke up…kind of stiff-legged. She was alarmed because arthritis runs in our family. My mom practically had to threaten my doctor to get him to order a blood test for me, which would determine if I had the HLA-B27 gene that can signal spondylitis.
I was diagnosed with Ankylosing Spondylitis a year later. The news was devastating, but it also helped to answer so many question marks in my life. For instance, when my 6th grade PE instructor had the class jump rope on blacktop for an hour, why were all my friends fine the next day, but I couldn’t walk? When Razor scooters became popular, I would ride through the neighborhood with my friends, up and down hills. Why was I too sore to get out of bed the next day? Playing an aggressive game of Ultimate Frisbee is exhilarating and so much fun, but I know I’ll have to pay for it later, with incredible pain and stiffness. Or what about a simple activity like bowling, which puts so much stress on my arm, it leaves me unable to hold a pen and write the next day.
I’m learning to make adjustments in my life. Even though some of my friends know I have A.S., they’re not looking out for my best interest. They’re constantly trying to get me involved in fun activities that I know will leave me stiff and sore. My swim coach knows I have A.S., but he still pushes me to do more than my body can handle. I’m realizing that I have to look out for myself, learn to say no to friends and coaches, and be my own advocate. It’s tough, because I look healthy and strong on the outside, so when I tell people I can’t do something, it appears that I’m just being lazy or making excuses.
I’m hoping to connect with other teens with A.S. to learn what works for them and share my successes and challenges. For instance, I’ve found that having an extra set of school books at home has made my backpack lighter and saved my back from extra strain. I’ve noticed that aquatic sports, like swimming and water polo, put a lot less impact on my joints than other sports, plus water sports maximize my mobility and flexibility. Also, remembering to take my medicine twice each day is critical to how I feel, and I’m trying to make it a priority.
I’ll be going off to college in a year. I’m trying to use this time to learn how to protect and take care of myself, to understand my limitations, but never let A.S. limit my success or happiness in life.
March 2008 Update: Age 19
I’m currently majoring in Screenwriting at USC, where I’m finishing up my freshman year. I’m having the time of my life and enjoying every minute of being on my own.
Choosing a college was an enormous challenge for me. I was diagnosed with spondylitis at age 10, so it was a big factor in deciding where I would go to school. I narrowed my choices down to two universities: UCLA and USC. I visited both campuses and walked from the dorms to the film schools, where I’d be spending most of my time. At UCLA, the walk to class was about a mile, uphill and downhill all the way. The USC campus was totally flat and compact.
I called the Office for Students with Disabilities at UCLA and USC before I made my decision and asked what they could offer me in the way of assistance on days when I was in a lot of pain. Both schools had systems in place, like shuttle vans from the dorms to class and on-campus parking. UCLA also had a Disabled Student Housing Appeals Board to assist students with specific dorm accommodations.
Ultimately, my decision came down to which school had the best academic reputation for my major, but second on the list of importance was campus layout and size. USC was the right choice for me on both accounts.
It’s been a big adjustment, managing my pain with medication as needed, filling prescriptions myself, keeping physically fit and trying to eat healthy food in the dorm dining halls. I’ve taken up skateboarding, which I was never allowed to do at home, because of my spondylitis. I’ve had a few big wipeouts, but it’s okay. I can skateboard to class in half the time it takes to walk, which means I can sleep a little bit later each morning.
The biggest problem I encountered at school was my dorm mattress. It was like sleeping in a hammock (no support). So I went to a store called L.A. Mattress and bought a $50 “bunkie board,” a twin-extra-long foundation that’s only 2″ thick. It’s designed to be used on bunk beds. I put it under the dorm mattress and it firms everything up pretty well. I still miss my bed at home, though.
I’ve written a script that’s in pre-production and filming is scheduled to start at USC later this spring. I hope to have a career as a screenwriter, or perhaps take my writing skills to the advertising industry or write a novel. In any event, I plan to live a full and active life, in spite of having spondylitis.
August 2011 Update: Age 22
I’ve just graduated from USC with a degree in Writing for Screen and Television. I’ve leased an apartment in West L.A., bought a gym membership, and joined the cast of an online movie review team at JustSeenIt.com. I get to discuss new film releases and offer my opinions, which is great fun. In the meantime, I’m pitching my film scripts to various industry execs and hoping to score a sale and representation.
I’ve been taking Humira and Azathioprine for the past six months and I’m hoping to feel some serious pain relief soon. Looking forward to getting back in the pool again, which should also help combat pain and fatigue.
There are lots of new adventures on the horizon. My challenge is to learn to manage my spondylitis in a way that lets me live my life and accomplish my goals. I haven’t got it all figured out just yet, but I’m on my way!