In The Minority - Tell us about a time you were in the minority. 500 word limit.
I'm everything but a majority. For as long as I can remember, adults have labeled me "unique" and "advanced" and "extraordinary." This year, they diagnosed me with a unique, advanced, extraordinary connective tissue disorder. They believe I've had it all my life. Until recently, I believed it was getting worse.
Ehlers-Danlos Syndrome, Hypermobility Type (EDS-HT) does more that weaken my joints. My nervous system remains on constant alert, finding danger in even my mother's touch. My eyesight--though medically a perfect 20/20--is a strain to maintain. When I pick up a child or brush my hair, my shoulders "subluxate" or slip out of socket. Though many of these things have been present throughout my life, some of my symptoms only developed this year. Episodes of uncontrollable shaking and screaming accompanied by feelings of being on fire pushed me to devote my gap year to solving a life-long disruption in my identity. When I did so, they found EDS-HT.
Perhaps my body-mind has always known of this disturbance; residing in my youth was a sense of wrong so inherent I thought everybody had it. It lived in my muscles and my emotions, coloring my childhood a shade no one else recognized. Running felt wrong, hugging felt wrong, and being told that I was okay definitely felt wrong. Playing felt most wrong of all.
A wise woman once noted that we hate in others what we fear in ourselves. This is the only explanation I've ever found for the rage I encounter when I tell people I'm in pain. Universal suffering is perhaps the most difficult notion to reconcile in our individualist society. When people see their strife reflected in me, it scares them. In a great disabling paradox, I am isolated by accepting the ubiquity of pain.
This year, when I discovered that I'd have to face my disability or face arthritis that could put me in a wheelchair before I was 20, I chose to face my disability. Due to the rarity of the condition, I've had to patchwork together a group of specialists from the great grey areas of Western medicine. Even the doctors that diagnosed me didn't understand the scope of the condition, and trust me, no ER doctor likes hearing that I can't take any non-steroidal anti-inflammatory drugs-no, not even Aspirin. I comb medical papers for tools to advocate for myself in what is often a hostile, undereducated medical environment. Even my treatment plan places me on the fringes of Western medicine. Perhaps I am meant to function in that capacity, for I find myself shifting into a different sort of minority: I am one of the only ones getting better. For the first time in my memory, I can play.
Words: 456 of 500 limit
I'm everything but a majority. For as long as I can remember, adults have labeled me "unique" and "advanced" and "extraordinary." This year, they diagnosed me with a unique, advanced, extraordinary connective tissue disorder. They believe I've had it all my life. Until recently, I believed it was getting worse.
Ehlers-Danlos Syndrome, Hypermobility Type (EDS-HT) does more that weaken my joints. My nervous system remains on constant alert, finding danger in even my mother's touch. My eyesight--though medically a perfect 20/20--is a strain to maintain. When I pick up a child or brush my hair, my shoulders "subluxate" or slip out of socket. Though many of these things have been present throughout my life, some of my symptoms only developed this year. Episodes of uncontrollable shaking and screaming accompanied by feelings of being on fire pushed me to devote my gap year to solving a life-long disruption in my identity. When I did so, they found EDS-HT.
Perhaps my body-mind has always known of this disturbance; residing in my youth was a sense of wrong so inherent I thought everybody had it. It lived in my muscles and my emotions, coloring my childhood a shade no one else recognized. Running felt wrong, hugging felt wrong, and being told that I was okay definitely felt wrong. Playing felt most wrong of all.
A wise woman once noted that we hate in others what we fear in ourselves. This is the only explanation I've ever found for the rage I encounter when I tell people I'm in pain. Universal suffering is perhaps the most difficult notion to reconcile in our individualist society. When people see their strife reflected in me, it scares them. In a great disabling paradox, I am isolated by accepting the ubiquity of pain.
This year, when I discovered that I'd have to face my disability or face arthritis that could put me in a wheelchair before I was 20, I chose to face my disability. Due to the rarity of the condition, I've had to patchwork together a group of specialists from the great grey areas of Western medicine. Even the doctors that diagnosed me didn't understand the scope of the condition, and trust me, no ER doctor likes hearing that I can't take any non-steroidal anti-inflammatory drugs-no, not even Aspirin. I comb medical papers for tools to advocate for myself in what is often a hostile, undereducated medical environment. Even my treatment plan places me on the fringes of Western medicine. Perhaps I am meant to function in that capacity, for I find myself shifting into a different sort of minority: I am one of the only ones getting better. For the first time in my memory, I can play.
Words: 456 of 500 limit
