I was born at 24 weeks gestation – I wasn’t supposed to survive. The doctors told my parents if I did survive I’d be unable to talk and have brain damage. However, despite being born weighing less than 1lbs and being only 8 inches long, I beat the odds. However, even as a baby in the NICU, everyone (nurses and doctors as well) all noticed that my skin was translucent, extremely fragile, and I was extremely flexible. But, everyone just thought it was “life according to Hannah” and no one thought much about it. As I grew up I battled severe bone pain (blamed as growing pains) and was frequently getting injured. I was often in a chiropractors office getting adjusted as my spine was frequently coming out of alignment – which was effecting the way I walked. I developed a retina hemorrhage in my right eye at age 9 and almost lost my vision (thankfully I only had minor vision loss). As I got older and older more things came into light: headaches, glaucoma, osteopenia, cervical instability, gastrointestinal delay/slow bowel, jaw pain (possibly TMJ).
In 2017, my teeth began to rot and crumble, despite always having great dental hygiene. In a matter of 7 months I went from healthy teeth to having them removed. The surgeon who did the surgery said that he’d never seen anything like that before. He said my teeth were rotting from the roof downwards. My left wisdom teeth was so impacted he had to leave it in or else he’d have to remove some bone in my jaw. My jaw was extremely small, my teeth were crammed together, and my pallet was very high. He then asked my aunt if I’d ever been diagnosed with EDS. Since I have POTS we’d heard of the condition but had never suspected it. So, for the next 2 years, we searched for answers. I saw several rheumatologists and numerous other doctors – but no one was willing to help me. However, in mid September 2020, I finally saw a doctor willing to help me and (after testing) I was officially diagnosed with hEDS. Over the next 2 years, my health declined rapidly. I developed cervical instability (still searching for an official diagnosis), seizures, cataracts, fixed pupils (don’t react to stimuli), urinary retention, scoliosis in my lumbar area. I have broken bones, torn ligaments, and constantly dislocate and subluxate my joints – often countless times per day.
However, despite all of this, I have found a love for writing poetry to help share my story. I’ve had some of my poetry shares on various chronic illness blogs and websites. I was nominate for the “Rising Star” Award for the Dysautonomia Support Network’s Patient’s Choice Awards of 2019. I’d submitted a poem in the Ehlers Danlos Society’s Talent Show a few years ago. Writing poetry has saved me – I can express my feelings and share my story. I am no longer hide my emotion because writing poetry is my outlet and allows me to be who I am and express myself in a safe manner.
I can now share my chronic illness journey though writing and sharing the struggles and triumphs of being a zebra – EDS (along with my other conditions) won’t stop me from doing what I love.