My earliest memories are of pain.
That sounds rather dramatic to say, but it’s true. I was the kid who was always limping through Elementary School, who constantly complained of this or that ache. But as a child, I was assured that it was all growing pains. I distinctly remember being told by a physician that “one day I would know what real pain is, and [my growing pains] aren’t it.” Little did they know.
In the 8th grade, I managed to dislocate my jaw by biting into an apple slice. It locked entirely shut. After a few months bouncing from doctor to doctor, I was sent to Children’s National, who admitted me in the ER after a failed relocation attempt. I have no consistent memory of the next three months, only flashes here and there. I’m told that after six days of treatment with no results, I was taken to the OR to have my jaw surgically reduced. Coming out of that surgery, I had what looked like a seizure (but wasn’t), and when I became lucid again discovered that I was paralyzed from T10 down.
Neurology couldn’t find a reason for the paralysis, and decided I must be faking it for attention. I was sent to a rehabilitation hospital where I slowly learned to walk again. Through this process I dealt with quite a bit of medical abuse and gaslighting, as my physicians didn’t believe that I was legitimately ill. I left nearly three months later with peripheral neuropathy in my feet, dislocating knees and ankles, and a fair amount of PTSD.
Months later, I finally got in to see genetics. During my jaw adventure a medical student mentioned that I might have hEDS, and I was diagnosed with it in the waiting room of the Genetics Clinic. Years of unexplained pain and other health issues were explained and validated in that three-hour appointment. I actually remember crying on the car ride home- not out of sadness, but because I finally had an answer for everything that had happened to me. Despite what I’d been told for months, I wasn’t crazy.
Now, after two years of proper treatment and testing, I’m a part-time wheelchair user and rely on crutches or my cane to get around without my chair. I have a GJ feeding tube in order to receive nutrients that I can’t get myself because of my digestive tract paralysis, and am awaiting Port placement because I’m reliant on IV saline infusions four times a week to hydrate myself and control my PoTS. I take a variety of medications daily and spend the majority of my time bouncing around from doctor to doctor.
But in spite of my poor health I’m a pretty normal teenager. You can always find me either hanging out with friends, reading, binge-watching crime shows and studying for my upcoming SAT. I aspire to become a novelist, and plan to go away to college. Despite my illnesses I’ve accomplished good grades, great friendships, and an acute understanding of who I am. The experiences I’ve lived through have been horrible, but I’ve come out the other side strong. That strength has been well-worth the growing pains.
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