The Art of Becoming a Successful “Zebra” I never fully comprehended the phrase “You wear the dress; the dress does not wear you,” until I was diagnosed with Ehlers Danlos Syndrome, in December of 2014. When I was diagnosed with a disease that could affect every aspect of my life, I learned what it meant to take control of my life. Waking from surgery is akin to rebirth. The third day following each surgery is the worst. The pain becomes real on this day and realization of the next recovery steps hit me. Unaware that I had Ehlers Danlos syndrome when I had the first two surgeries, I assumed that…

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    “Goodbye Drew,” I exclaimed as I did every time I left his house after an action-packed hour of play therapy. Every Wednesday when I arrived, Drew would immediately pull me into an array of activities. First of course we would, or rather I would sing our weekly playlist of Drew’s favorite songs, which include “The Wheels on the Bus,” “If You’re Happy and You Know It,” and “Happy Birthday.” Drew, a non-verbal eleven year-old boy with autism and Down Syndrome, would just clap and babble along with a grin. But this particular Wednesday afternoon was different. As I was waved goodbye, he said for the first time, “Bye…

Accepting the idea of normality would be a gross understatement of the challenges I have overcome. I am not normal, nor have I ever been society’s version of “normal”. Walking two hundred feet is a marathon. A flight of stairs is nothing short of a miracle. I live with Spinal Muscular Atrophy, a rare neurological disease similar to ALS in that my muscles have deteriorated to a point where it is incredibly difficult to function without the use of a wheelchair. There is one thing that the weakness of my legs will never take from me – the ability to control my future. Growing up, I felt the constraints of…