My Story: How I became an Advocate

I have suffered from hyperacusis since I was six years old. I also have several other medical conditions, including being low vision legally blind. Growing up, my childhood has been very different than most kids, I have been unable to attend social events, go to the store or most public places, listen to music, wash dishes, go on vacation, or even take showers because the noise causes me extreme physical pain and lingering migraines.I have loved listening to and reading books for as long as I can remember. When I was younger, I would often be laying down resting due to pain. I loved listening to books softly during such times for hours on end. I enjoyed fantasy, sci-fi, historical fiction, realistic fictio, non-fiction about science, history, etc. I learned a lot from all of the books that I listened to, and often times found comfort and strength through the characters. I have also always enjoyed making up stories ever since I was littl, I would act out stories with my dolls (I still do)

Most of the time I would (still do) stay in my soundproof bedroom, closet, or grandmas underground basement. I experience pain on a daily basis just from noises like airplanes, or phones ringing. Imagine that silverware touching a plate felt like you were being stabbed in the temple and ear, and that people talking and laughing felt like you were being punched in the head, and you get a migraine afterwards.

Unfortunately growing up most Doctors didn’t believe me about being in physical pain and often thought that I had an emotional or psychological condition. There is also very little research done on pain hyperacusis, so I didn’t even have any evidence to use in my defense. Due to the rarity of hyperacusis and the lack of research, I was often subjected to sound exposure treatments that increased my pain and worsened my hyperacusis. When I was about 9 years old, my vision teacher had me start brailing letters to my doctors and IEP team, to explain about my hyperacusis and communicate my needs. Throughout the rest of elementary school, I would often write letters to try to help my doctors and educators better understand my medical situation. I have been on and off of Home & Hospital many times and in elementary school, attended several different educational placements. The school system has not been able to meet my needs even in a small Special education program with a lot of accommodations, attending school is intensely painful for me, and I am often absent due to the lingering migraines I get from noise.

In the sixth grade, I was put into an extremely physical painful situation regarding my hyperacusis (behavioral therapy). I felt very misunderstood all the time because no one else could understand what it was like to have your head and ears hurt all the time from normal sounds, no one understood what sounds physically feel like for my body. I realized that I couldn’t just write about how I was feeling physically, but I needed to write an actual medical research based argument to convince my doctors and parents to stop this treatment. So I did a lot of research and just before my 12th birthday, I wrote my first medical research paper. Throughout midd school, I learned how to improve my research argument and wrote several other argument papers about the rights and accommodations of people with hyperacusis. In the Eighth grade, I wrote and published my first big, long term story on Whattpad, called The Moonstone Girls. Unfortunately my mother did not want me to continue to write on Whattpad, for fear people would take my ideas and I would not be able to make money off of them. I also began to do a lot of medical research on pain hyperacusis, to try to find information to show my Doctors and parents that it was a physical condition that was made worse by sound exposure.

I also wanted to try to connect with other people who had hyperacusis, so I joined the Facebook group hyperacusis support and research. Joining this group made me feel like there were other people who understood my situation and gave me empowered me to keep fighting for myself medically.

I also discovered Hyperacusis Research, a non profit organization dedicated to finding a cure to noise induced pain. I have been in contact with President Bryan Pollard ever since then. Hyperacusis Research was very new, founded in 2011, but they didn’t make there first major research discovery to support the existence of physical mechanisms until 2018 (when I was in ninth grade).

In the ninth grade, Hyperacusis Research also published several articles in peer reviewed medical journals about pain hyperacusis, that supported what I’ve been trying to tell people all along. This new research helped my doctors and other adults in my life to gradually start to change there perspective about my hyperacusis and how it should be treated. I began to write research papers to my doctors to make arguments in favor of sound avoidance and siting Hyperacusis Research.

I also began my first major book with plans of formal publishing called, Alien Princess: The Mertopian chronicles book one. It is a sci-fi story, but main character a teenage girl named Emerald suffers from hyperacusis.

In Tenth grade, I had a project where we had to create a bill proposal for government. I decided to do my proposal on having the state of Maryland create a Hyperacusis school program. In February, for the first time I was given a chance do to speak and tell my story about being a student with Hyperacusis and what it’s physically like for me every day. I did a presentation in front of the Howard County Department of special education and made several recommendations. Hyperacusis Research also continue to publish more peer reviewed articles in medical journals about pain Hyperacusis, and for the first time they were given a grant by NIH. My goals are to finish writing, get Alien Princess edited and formatted by September 5th 2020, and then begin the publishing process. I have already started planning the rest of the Mertopian chronicles series, as well as several other books that I plan on writing. Educate and raise awareness about hyperacusis, help connect people who have hyperacusis or other rare or chronic pain conditions with each other, put in place laws and policies to help people with Hyperacusis and other disabilities. Once the COVID-19 quarantine began and I’ve been able to stay in my bedroom and closet most of the day and I’ve been in so little pain, I decided to take things a lot further. I created a website, Facebook, Instagram, and YouTube called Hyperacusis awareness to try to help people with Hyperacusis. 

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