2016 did not go as planned. I’m learning to understand this is okay, but getting to this point has not been easy.
Although I wouldn’t put this past year in my “top 10 list”, there were still some incredible moments.
I joined MDA Team Momentum, ran a half-marathon and raised over $3,000 for the Muscular Dystrophy Association. I volunteered for an amazing week at MDA Summer Camp. I bought a new road bike. I completed my first triathlon. I visited a friend in Washington and saw the mountains.
Looking back on these moments make me proud of the life I’m living. Many of my greatest accomplishments come from doing things I was told I would never do. I thrive off the ability to be in control of my body and push my limits through various endurance sports.
Despite being able to overcome the symptoms, every so often EDS knocks me down. It comes with the territory of having a rare, chronic illness. This is what happened in 2016.
Chronic pain is an unfortunate symptom of EDS. Each patient feels this pain differently, but for me my spine, knees, ankles and hands bear the brunt of my pain. My spine pain was a late addition, but began in 2013. The pain was tolerable until I pushed myself past my limits with a new physically demanding job in 2015. This did not end well and my pain soon became intolerable. Some days just a deep breath was enough to aggravate my spine. Initially, I was diagnosed with Juvenile Degenerative Disc Disease, a herniated disc and a stress fracture. Super fun. A round of steroids and an injection brought my pain back down to a tolerable level.
Through all this I maintained my position as a coxswain on my University’s rowing team, a position I loved. However, during Spring of 2016, my spine pain increased again. Sitting in the boat for practices and races became increasingly difficult, but I was determined to continue until I thought that it was no longer possible. I wanted to live my life on my terms, not ones set for me by EDS.
Unfortunately, this was not in my cards. A new flare in the Fall of 2016 brought me to a new orthopedist who requested another MRI, a DEXA scan, multiple x-rays and blood tests. And this is where 2016 really went downhill.
I learned I developed another stress fracture as well as a chronic compression fracture, resulting in a 50% loss of vertebrae height. It was also revealed that my EDS has caused low bone density, which is why I have a fracture that usually occurs in the elderly population. At first, this information wasn’t that hard to digest. Just another thing I’d live with, I was used to it.
That is until at a follow-up appointment my doctor and athletic trainer determined I was no longer medically eligible to continue being a coxswain for my Senior season.
This hit me hard. Most of my friends were on the team. My social life involved being with my teammates. I loved the thrill of racing on the water. And now, in the span of one 30-minute appointment, it was all taken from me. The visions I had of my senior year. My hopes for the season. The identity I’d built for myself as a collegiate athlete. For the first time, I was not in control of my health. My health had taken control of me. My health determined when my season ended, not me. My mind and body are not in agreement and this reality scares me.
This was is harder to understand than the physical pain. I’d love to talk about these emotions in the past tense, but I’m not there yet. The initial shock, confusion and “lost” feelings have lessened, but thinking about the upcoming Spring semester and season I won’t be a part of still makes me sad.
I’d like to be cleared to run again. I’d like to be able to sit through a class without pain. I’d like to be in control of my body again.
This is where my writing project comes in. I’m writing to gain personal clarity, and help others along the way. This is my story. It’s not pretty, simple or easy to understand. It’s often complicated and confusing. But it’s also full of love, beauty and amazing accomplishments. Ehlers-Danlos Syndrome will always be a part of my story, but it doesn’t get to be the main character. It might be raining now, but I might as well smile.