Accepting the 'Rare' Roadblock in My Active Life

For the third time that week I sat quietly in a room with icy tile floors and Disney characters stamped on the walls, my legs dangling from a blue leather bench lined with thin, coarse paper. Apprehensively, my eyes glanced up to the clock above the computer monitor in the corner while the stethoscope to my left became a palpable reminder of what was becoming my new normal.

• What is Ehlers-Danlos Syndrome?
• What Are Common Ehlers-Danlos Syndrome Symptoms?

Ever since I can remember, I was in continuous motion. As a toddler, I was enrolled in “Little Gym” classes and frequently used our household furniture as gymnastics apparatuses. Continuing in cheer and dance through my junior year, I can confidently say my body was always doing something extraordinary.

As humans, we have this innate ability to perceive situations — and how we would react to them — long before they happen. Unfortunately, there is a rare roadblock that erupts through the concrete, much before we can anticipate the need to ease on the brakes or consider another route. We crash into the warning sign, disoriented and a bit beaten, temporarily clueless about which direction to stumble toward next. My roadblock came in one of those rooms from a compassionate women in a long white coat, as complicated words expelled from her lips like “Ehlers-Danlos,” “mutation,” “orthostatic tachycardia,” and “connective tissue.” My once active self was now put on restraint with little opportunity for escape.

I did not expect to be told I am chronically ill, that there is currently no cure for my condition, and that I will never make a full recovery. I sure didn’t tell my joints to give up on me or for my autonomic nervous system to run its own show. Twenty one pills amongst my meals wasn’t something I voted for, nor did I expect to be surrounded by such a loving community or to have my teacher’s children pray for me. My sweet grandmother’s words resonate here as I’m reminded although my physical body is defying me, I am “never to waste that God given brain.”

I will not lie: acceptance is challenging. On occasion my symptoms demanded I stay in bed with a heating pad on my back and pillows supporting every limb. An assortment of colored pencils lay in my lap as I worked in my anatomy coloring book between study breaks, listening to psychologist Brene Brown’s TED Talk on empathy play the background. On occasion I’d reach over to my nightstand for my phone; graciously, I’ve been given the opportunity to connect with girls through online support groups who fight alongside me every day against pain and the societal implications of what it means to be sick when you “look healthy.”

While not in my ideal physical state, I’m well aware there are others fighting battles of a greater caliber than I could ever perceive. Eagerly, I feel indebted to contribute to the medical community. The doctors who have helped me serve as optimal inspiration for what I now expect of myself. I welcome the idea of working with professors on research opportunities and have hopes to team up with other students to promote awareness and funding for rare diseases, much like my own.

Although I do not refer to my disease as a gift, I never would have expected to be content with what is now my perception of normal. These challenges seek us out and size us up. Being ill has become a small part of my identity, and it became something I care about. It has given me gracious acceptance of myself and welcoming arms to others, as there no way of telling if the person sitting next to you goes home to worry about something the human eye cannot see.

Thinkstock photo by grinvalds