One of my “favorite” things about having Freeman-Sheldon Syndrome is finding others who also have it. I first met Julie when she wrote to me after reading So About What I Said. She was interested in my experience with FSS and it was amazing talking to someone who went through some of the same things I did. I asked Julie to share her story, and I’m so glad she said, “YES!!”
My name is Julie Roda. I am 29 years old and live in Massachusetts. I was born with a rare genetic disorder called Freeman-Sheldon Syndrome. This syndrome causes severe contractures in the joints of the body. I have had 32 orthopedic surgeries to correct the abnormalities. I have scars on my arms, legs and back. I have a steel rod down my spine, screws in both my knees and a metal implant in my hand. I walk with a limp and wear a knee brace. My hands are visibly malformed and don’t work as they should. I am DISABLED. And you know what? I’m okay with that.
It took me a long time to admit that about myself. Growing up, my parents’ expectations of me were no different than any other child. I could do anything anyone else could, which sounds nice in theory. But the older I got, the more I realized that just wasn’t true. Instead of honing in on the things I excelled at, I spread myself too thin with activities that I just wasn’t meant for in order to prove to them — to the world — that I was just like everyone else. Because of that, I often failed, quit or worked myself beyond my physical limits.
For a long time, my dream was to become a nurse, work with children and give back to the community that had given so much to me. I got into an accredited private college with an excellent program. It was my dream coming true and I excelled in my classes. The problem came during my sophomore year when clinicals were starting to be scheduled. Before I was accepted into the college, I met with the board of the nursing program. I let them know about my physical limitations, specifically my concerns about the amount of time I could stand and how much I could lift, but that I was more than capable of becoming a nurse in a manner that could be accommodating. I was ‘assured’ that they would work with me and place me in more suitable settings. They prided themselves in being handicapped-accessible in all aspects of the school. Well, here I am, almost two years later in front of the same people now telling me they ‘are very sorry, but [they] don’t handle the scheduling anymore and can’t guarantee what positions I’d be placed in.’ I fought. I had people in my corner. I had the grades. But I was young and only had their word that they would be able to accommodate me. Do I risk hurting my body even more? I was already scheduled for two knee surgeries. I knew my limitations and watched my dream crash into a million pieces.
I tried majoring in hospital management, but quickly lost interest in anything school-related and ended up leaving at the end of my second year. I then started the tortuous task that is job hunting. With no education, experience or skills, I rarely got a call back. When I did, it wasn’t those lacking attributes that didn’t land me the job. It was often me. No one would ever say anything, but I knew the routine. I could tell if I’d be offered the job just by the expression on the interviewers face when we first met. I got the ‘You’ve-got-to-be-kidding-me’ expression as we shook hands limply. They’d lead me to the interview room, ask if the seat is ‘OK for me’ and sit as far across the table as possible. They’d browse my resume for half a nanosecond, and then look up at me with an uncomfortable smile. They’d ask two irrelevant questions and back out the door I went, never to return. Interviews are awkward enough; knowing my disability could be so unnerving to some people has always been a hard pill to swallow.
I was getting nowhere, so I went to the Massachusetts Vocational Rehabilitation Office. This office helps people of all disabilities find and maintain work in accommodating settings. I was offered a job working remotely from home for a company in Florida. I finally found the perfect workplace — home! I had everything I needed. I could accommodate myself in any way. I could get up to walk around, and I could even go lie down if I needed to! Unfortunately, I was laid off a year later, but that job put ideas into my head about my future career path. I had heard there was a lot of opportunity for working at home in the medical coding and billing field. I decided to go back to school after 3 years. I went to a local community college and had an excellent experience. Everyone was accepting, the campus was accessible and my professors were more than accommodating. I worked with a wonderful woman from disability services who guided me through assessing my needs and making modification plans for each school year. I graduated with honors, received an award for my achievements in the medical coding and billing program and became a Certified Coding Associate.
Although it was my plan to work from home, I received a job offer shortly after I graduated. I made the decision to take it because I wanted the experience. I was working six hours a day five days a week. I felt fine at first. The office understood my limitations and allowed me to make any adjustments I needed. Even though I brought my arsenal of pillows, a stool, an ergonomic chair, everything I needed to be comfortable, my back pain came in slow but strong. I had scoliosis as a teenager and a metal Harrington rod was inserted into my back to straighten it. Since that surgery, I’ve acquired indescribable pain in my upper back, neck and shoulders. It came to a point where I just couldn’t do it. I spoke with the Human Resource Manager and to my surprise, they offered me a lighter job with less hours. But the damage had been done — the strain from repetitive motion caused me to pull a muscle that left me in so much pain that I couldn’t drive to work, let alone sit there for 4 hours. This was an exceptionally accepting business office, though, and I appreciated my experience there.
Right now, I’m in what I like to call ‘limbo.’ My pain is so severe that I am having surgery to remove the metal rod this fall. I don’t want to start a new job right before this, and that’s if I were able to work. I’m on government assistance right now. Yeah, I said it. It isn’t easy to. I hear how people talk about ‘those leeches‘ using and abusing the system, and there are some. I pulled up to the Food Stamp office once and saw a person, card in hand, get into a brand new candy-apple red Jaguar. It made me as angry as it makes everyone else. I don’t plan to be on it forever. I hate not working. I’m praying this surgery will help so I will be able to work and be a contributing member of society.
I’ve had quite a few bumps in the road, but I chalk it all up to experience. I still have so much more to learn. My journey is far from over. I am thankful that I live in a country that gives the disabled the same rights as everyone else. Those of us that have disabilities share the same dreams, goals and aspirations as any other person. The Americans with Disability Act of 1990 made it possible for us to achieve them.