*Note* This was written in 2018. I did not feel brave enough to publish it until now, September 30,2020.
In the still moments between peace and pain, I find myself questioning my identity. Am I the girl with invisible stripes, forever marked by the zebra, the mascot of rare disease? Am I the adventurer I always dreamed I would be? A titanium heart, a body made of glass; every day involves fighting for the strength to keep me from shattering.
Ehler-Danlos Syndrome is my enemy. It’s a rare connective tissue disorder that affects the makeup of collagen. Imagine discovering the most beautiful home in the world. Everything about it is perfect. Then, without reason, the house begins crumbling. You research for days, months, even years, before realizing that the brokenness is resonating from within.
Welcome to my life with EDS: joint hypermobility.
It began with scoliosis along with an unexplainable bulging disk. Years later these symptoms were followed by repeated spontaneous knee dislocations, shoulder subluxations, and rib dislocations. I used to believe I could protect myself from injury by limiting risk and adventures. I was wrong. In reality, EDS is a relentless battle. The fear of pain has all but choked the life out of me. The thing about EDS is that the flare ups are unpredictable. It doesn’t take much to trigger a flare. A simple wrong step or breath can be a personally cataclysmic event.
There was a time where I was filled with wanderlust. I saw myself as a world traveler, a musician, a motivational speaker, a volunteer distributing restoration to impoverished communities. As a teen I built houses in Mexico on spring break trips. In my early 20’s I visited Australia and raised awareness about human trafficking in local community outreach projects. Currently I find myself in my mid-20’s aspiring to hike as often as possible. Music is becoming more of a passion as I sing and write and learn the language of guitar. I’m entering into the world of nonprofits and grant writing by volunteering at a local foster care agency.
The truth about my glory days is that they weren’t without problems. There were sleepless nights in Mexico from migraines and the effects of scoliosis. The adventure to Australia occured just weeks after completing physical therapy and learning how to walk again after a severe knee dislocation. At the time I was still undiagnosed and my physician dismissed my feeling of patellar instability, explaining that it was my subconscious causing the insecurity. Therefore,(believing my doctor’s diagnosis), I began my travels without any knee support while also recovering from tendonitis. The dislocations resumed the moment I stepped off the plane. Add into the equation that my ribs were also dislocating without benefit of proper aid and diagnosis. I simply lived with my ribs out of place for the six month excursion.
While the good days are full of hope, the bad days are completely defeating. Living with an invisible illness can feel suffocating. I know how to smile through the pain. I know how to hold myself together with tape and braces and compression garments. I hide my fear: fear of another injury, fear of continuing to break apart until all that’s left are shattered pieces, fear of not being able to accomplish my life goals. I hide my depression that comes with the realization that I am slowly losing the job I love. Teaching preschool has been my identity and my passion. However, as my condition worsens, I find myself with infinite work restrictions such as limited bending and lifting. While understanding that these restrictions are in place for the safety of myself and the children, I silently struggle with feelings of incapability. I hide my anger that is rooted in the fact that my body is failing me. It’s painful to see able-bodied peers loading their own groceries, jogging on the street, carrying children; all carefree and without trepidation. I hide my uncertainty of motherhood and child bearing. As is it right now, any change in weight can throw my body off and cause multiple dislocations. I don’t dare let myself imagine what it would be like to grow a little human inside of me, knowing that there’s a 50% chance of passing this disorder onto my children. I hide my heartbreak, locked away inside–just like my invisible illness.
One of the breaking points in this journey came before my diagnosis. I had been sick for months, with what turned out to be pneumonia. I remember attempting to quietly enjoy a choir concert while being plagued by uncontrollable coughing attacks. Suddenly I felt a shift and twist in my entire right side, accompanied by a crunching noise and extreme pain. By this point I had become familiar with the unusual workings of my body, enough to know that I had just dislocated multiple ribs. The next few weeks were spent lying in bed and doing my best to hold back the tears. The smallest movements, even those made from breathing or crying, felt like being stabbed by with a sword with was then ripped through me several times over. I became angry that chiropractor visits brought no improvement, because as soon as I’d sit up everything would slide out of place. Depression and despair filled every inch of me. Paralyzed by pain, I held on to this spiritual phrase “Now I know just what they mean. In you I live and breathe and have my being”.