My Whole World Changed

Myasthenia Gravis came and took my breath away, quite literally. Just shy of my twenty-third birthday, my whole world changed. In the beginning of August 2011, I was running on a beach with a glorious tan, laughing and carefree with my younger cousins. My future beckoned to me, the possibilities endless, my dreams just in sight. By the end of August, I was in a wheelchair, paralyzed in the legs and wondering if I was ever going to walk again. The ensuing weeks were terrifying and exhausting. They were also only the beginning.

MG propelled me through a rotating door of frightening non-stop ER visits and clueless doctors who berated me, ignored me, mocked me, threatened me and dismissed me. I endure endless testing and sardonic questioning that ultimately left me in a place that caused me to question myself, my own sanity. Even after my hard fought diagnosis, I struggled to find a sense of balance. I was overdosed or under-dosed, misunderstood and afraid. Each doctor had their own opinion and none could agree with the other. All held one unifying opinion, however. Each emphatically believed that I was exaggerating, that I could not possibly be THAT sick. After all, Myasthenia Gravis was “easily managed”, right?

I did not learn to respect where Myasthenia Gravis can take you until I was faced with my first life and death encounter, until that agonizing span of time where my life slowly ebbed away as my mother held me choking and gasping in her arms in a small hospital room, surrounded by professionals perplexed at how to help me. Each time a crisis washed over me, I learned anew what fear was, what life really meant and how fleeting it can be.

I learned right then and there the foolish frailty of believing that MG was ever a simple disease for the majority it inhabits.

I will always be a Myasthenic. It quite literally runs through my veins and is in my blood. That thought used to frighten me. While I must acknowledge the hell of MG, I too am given to honor the blessing that it can be. MG taught me that moments matter, that we are not promised the future and that God can bring beauty from the ashes. It has been a refining fire in my life that has brought new depth and a better understanding of my fellow warrior. It has also propelled me into the heat of the fight for awareness, for keen understanding on what MG often is, not what we have so long believed it to be. MG also served to hone my passions I once thought long lost to a rare disease, into a desire to showcase the humanity behind our suffering so that solidarity and hope may shine through.

Myasthenia Gravis is just the beginning for me.

– Rebekah Dorr

Myasthenia Gravis Warrior since 9/22/11

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