Jemma-Tiffany is 16 years old and lives with hyperacusis, a rare, debilitating and poorly understood and under researched disorder that causes her to experience physical pain from normal, everyday noises.
Here is Jemma's powerful poem about her personal experience and how lockdown is bringing her relief and a new purpose!
I was born rare, with cataracts so right people knew I was different
Tested and monitored as a baby and toddler, but only showing signs of and diagnosed with sensory processing disorder and several other strange and quirky symptoms
Late in first grade sounds started to hurt, I wore earplugs to the cafeteria, music, gym and other loud activities
In second grade the pain began to turn into full out noise induced chronic migraines, going to stores, restaurants, social gatherings became a thing of the past
School was pounding and stabbing pain migraines that landed me on Home & Hospital instruction year after year
Doctors appointment after doctors appointment with no answers
Losses—more vision, a diagnosis of chronic migraines and glaucoma
Third grade repeat scenario, finally though we got a diagnosis hyperacusis
People now subjected me to sounds exposure, pain worsening and being told that it was all in my head
Being sent to a school with screaming kids that stabbed my head and made my head hurt, put next to a drum room that pounded on my skull
Seizures and a diagnosis of epilepsy
Relieved to finally get Home & Hospital again, only to have it taken away from me the next year
No one understanding falling into despair from the pain, and attempting suicide
Put in a psychiatric hospital; screaming, banging, blasting music, pain of my skull being beaten and ears on fire
Crying and pleading, while people said that I was making it up, that it was in my head
Finally released, but with a sound exposure plan and Home & Hospital taken away
Forced to endure throbbing and stabbing from the invisible weapon of noise just to learn
Writing, researching, trying to get people to understand
Finally they got rid of the plan only to replace it with showers
The noise of the water stabbing at my ears making my head throb
Noise induced uncontrollable shaking
Hyperekplexia diagnosis
Thankfully this eventually stopped, still having to attend school though
Missing a day each week from lingering migraines
Pain building up and fear of even worse to come
Another suicidal attempt in the eighth grade
God worked a miracle and spared me from hospitalisation
Slowly over the next year little bits of research began to come out to support hyperacusis as physical condition made worse by sound exposure
Continuing to fight and research, a year later finally being able to write a medical research paper to my doctors, speaking and telling my story to the department of special education in my county
People finally beginning to listen to me, now a fire inside of me, determine to prevent others from going through what did
The quarantine, virtual activities, distance learning finally freeing me from intense daily pain
Rejoicing at the relief from pain, and blossoming using my energy and new virtual ability to advocate, educate, and raise awareness and help others like me
Written by Jemma-Tiffany
To find out more about Jemma-Tiffany and hyperacusis please visit:
or follow her on Instagram @hyperacusis_awareness
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