I’m a 17 year old writer & advocate for my rare disease, hyperacusis. I love writing poetry, non fiction articles, & short stories on a variety of topics: mermaids, fantasy, emotions experienced throughout human life, sci-fi, fantasy, ect.
A reverse Cinderella story
I woke up to the sound of trumpets blowing that morning, this is when things really changed for me. My handmade came and dressed me and quickly ushered me to my father’s court. By the looks on everyone’s face I knew something frightening was happening. Then I saw them, the Portuguese trader and his interpreter standing in front of my parents. I took my seat next to my father, my father nodded his permission to the man. The man said “ I am here to establish a trade relation between our two peoples” “what type of trade do you speak of sir?” I could tell even then what my father was thinking “here comes one of these no good portuguese slave traders”. The man said, “gunpowder and horses in exchange for slaves” “ I will not give my own people away to a life of tyranny in exchange for wealth,” My father said. Then the two men left just like that! Well my mother said sighing I bet that won’t be the last of them, and she was right.
My name is Amythest and I am 17. I was created by scientists who used remains of alien DNA from a space rock that they found on Mars. I live at a science laboratory run by NASA and SETI. Doctors and scientists have been studying me my whole life to try and figure Out what planet I come from and learn more about my species. The main things that the scientists have learned about me is that I posses strange magical powers, turn into a mermaid when I get wet, and can not see. As I have grown up the doctors have learned that my intelligence is at least the same as most humans if not highier. Every day doctors run tests on me to try to find out more my body and brain. This morning a doctor named Emily came to my room. Emily told me that she wanted to do some tests to learn more about my magical powers. The doctor hooks up a bunch of electrodes all over my body and head. First I would like to see you levitate the doctor says to me.
Growing up with Hyperacusis
I was born with cataracts and am low vision legally blind I was also diagnosed with sensory processing disorder when I was five. When I was six years old I began to experience pain from very very loud sounds such as the cafeteria, weddings, and birthday parties, I was ok though as long as I wore earplugs. At age 7 I started having awful migraines that would last for up to months at a time and were exacerbated by normal everyday sounds. I became unable to attend school and was put on home and hospital. My mother took me to a lot of different doctors but none of them really know what was going on, they said that I had chronic migraines with extreme sound sensitivity. I became unable to go to the store, attend parties, go to restaurants, or even watch TV on a normal volume due to the physical pain these things caused my head and ears. Around this time I was also diagnosed with glaucoma and lost even more of my vision. In the beginning of third grade my mother took me to see an audiologist as she felt like my sound sensitivity was more extreme than that was just a normal migraine. The audiologist said that I had a rare disorder called Hyperacusis, unfortunately many of the treatments that he had me do for my Hyperacusis only intensified my pain. In third grade they started me off at school which was very painful for me The pain eventually built up to the point where I was lying in bed for about a month and ended up on Home and hospital again. Except now my Hyperacusis was even worse even the sound of wind blowing or birds chirping was physically painful and I was no longer able to go outside. My mother took me to see many different doctors and therapist unfortunately many of them did not believe me about experiencing physical pain from sounds. Many of the doctors thought that my condition was psychosomatic or and emotional disorder. Even the few doctors who did believe that I experienced physical pain was still forcing me to do desensitization and sound exposure therapy. These plans only increased my pain level which in turn led to me being even more sensitive to sound, I felt so misunderstood and alone and it was so frustrating being in pain and having no one believe me. In fourth grade, this was also around the time that I started to have seizures and got diagnosed with epilepsy, I was transferred to another school that had a specialized program for students with emotional disabilities. Unfortunately many of these students would scream and bang loudly which was excruciatingly painful for me. The pain just continue to build up day after day and eventually I was no longer able to continue attending school and once again ended up on home and hospital. Hyperacusis was even worse now all of the noise from my school had caused a long-term increase in my hyperacusis. I was no longer able to eat in the kitchen the sound of the refrigerator humming caused throbbing pain on my forehead and the side of my head above my ears. The sound of silverware clanking together felt like I was being stabbed in the temple and ear. I could not even sleep in my own bedroom because I was able to hear the sound of traffic from the road which sent throbbing pain to my forehead. My parents soundproofed my bedroom and I sleep in a closet inside of the soundproof bedroom with both of the doors closed. Whenever the people would come to mow the grass or blow the leaves my mother had to drive me away because the sound from the power tools felt like I was being punched on the forehead and ears. I spent most of my time either in my grandmothers underground basement or my closet. I have to watch all of my TV shows on volume one and am unable to listen to music. When my friends come over we just hang out in my bedroom and talk softly. I was receiving home and hospital instruction at an office building and this was working quite well for me it was quiet and I was able to learn without it being extremely painful. In fifth grade they decided to have me go back to that school again only this time they said they would put me in a separate room by myself. Only the room they got me in was right next to the music room! The sound of the drums was so painful for me I felt like I was being beaten in the head and ears. The pain once again continue to build up and I could no longer attend school anymore and ended up on home and hospital once more. I spent most of my time in my closet or in my grandmothers underground basement and although I was in less pain as my environment was much quieter, I was under a constant high level of stress and fear as many of my doctors were still wanting me to do sound exposure therapy. I felt miserable because no one understood and Hyperacusis no one understood what it was like to experience pain from every sound and I was so afraid they were going to make me do exposure therapy as they were always talking about it. In sixth grade they started me off in the very beginning of the year on home and hospital but it was there a louder building. This increased my pain level and I thought that I just couldn’t take it anymore I knew that something really bad was about to happen to me and the people were going to start making me do things it was very painful and then I would have to experience that pain but I have experience in the past, so I tried to prevent myself from having to go through that pain again I attempted suicide. I ended up in a psychiatric hospital The doctors there not that I was just being manipulative and they do not believe that I experienced physical pain from sound they thought that my Hyperacusis was something that I was making up. They forced me to go to group therapy and eat meals with the other children who were nonverbal and would often scream and bang. I was in more pain now than I have ever been in my life who is even more painful than the time I fell and fractured my wrist. I felt like my head was going to explode my ear felt like they were on fire, often times I wanted to cry because the pain was so bad. They tried to convince my parents and I was just being manipulative and that my Hyperacusis was purely a behavioral problem and that I did not experience real physical pain from sound. My mother did not believe this however she and my family did implement the behavioral plan that they sent home with me when I was discharged. I went to a day program for about a week after being discharged and the doctor they’re decided to take me off of home and hospital. I started going to school at a special program and although it was quieter than some of the schools I’ve been in the past it was extremely loud and painful. Every day I was in extreme pain and the adults in my life did not believe me at home or at school. At home my parents try to implement behavioral plan which mostly involves me doing things in the kitchen or on the main level. I refused as I was in so much pain and people thought that I was simply being uncooperative. Every day I wanted to die because the pain was so bad. Finally I decided to do a lot of research of my own to try to find out more information about Hyperacusis I want to research paper to my doctor and after about six months of me refusing to do the plan and trying to explain to them that it was causing me extreme pain they finally got rid of it. Unfortunately I still continue to attend school for me attending school not only caused me pain while I was at school but also lingering pain on the weekends and days off. I often miss at least one day of school every week due to the pain from sounds. My migraines were awful and the Hyperacusis was not improving at all. I still wanted to kill myself because I was in so much pain and I didn’t know if it would ever end. Around this time I was also diagnosed with hyperekplexia. My mother decided to take away my headphones and start forcing me to take showers that summer. The sound of the shower water running sent throbbing pain through my forehead on the side of my head. The sound of the water hitting the bathtub sent sharp pain into my temples and ears. I cried every time I had to take a shower because it was so painful and the pain lasted long after the shower was finished so even though I showered only every other day I was still in heightened and elevated pain in between. Without my headphones to cover my whole ears I only have my earplugs. This further elevated my pain level and I continue to make frequent suicide attempts. I was never able to escape from the pain. Finally my mother stop forcing me to take showers and my father was willing to run my bathwater. I was still in extreme pain though from attending school and not having my headphones at home although thankfully mother would allow me to wear them at school. I spent all of middle school wanting nothing more than to die just somehow escaped from this pain, I just wanted the pain to go away and no one understood. I made another major suicide attempt in eighth grade because I just wanted to escape from the pain. I ended up in the emergency room although I was able to convince the psychologist on duty to let me go home. Things did begin to improve slightly after this my doctors and parents agreed to look at some of the more recent research on hyperacusis and different therapies that did not involve sound. I started using different electrical nerve stimulation devices which helped reduced my pain level some. I was now able to sit in my bedroom without any human protection as well as sit in the upstairs bedrooms when it was quiet without hearing protection without exacerbating my pain. I am still in extreme pain every day and every day small sounds still hurt me though. This was when I found out about Hyperacusis Research a nonprofit organization dedicated to finding a cure to Hyperacusis with pain. Their research was what started to help my parents and doctors to understand more about Hyperacusis. I reached out to President Bryan Pollard of Hyperacusis Research and shared many of their research articles with my parents and doctors. I also found an online support group on Facebook called Hyperacusis Support and Research. This was so helpful for me as I was finally able to talk with other people who had pain Hyperacusis and well were made worse by sound therapy and I have had similar experiences with doctors and family members who did not understand. In ninth grade they had to shorten my schedule as my pain was just too intense from all of the noise to do a full day of school as I had several classes in core a noisier part of the building, I also received home and hospital instruction from math class which was helpful. Although my mother is more understanding she still continued to believe in auditory gain theory that if I overprotective then it will make my Hyperacusis worse. I continue to follow Hyperacusis Research and show this information to my parents and doctors. I am now in the 10th grade and attending school is extremely painful for me even though I am in a small specialized program with accommodations. Now that my mother understands the situation much better we are trying to find a way for me to be able to receive home and hospital instruction but we must find a doctor willing to sign. Every day I am still in a lot of pain and my main focus is trying to avoid as much noise as possible and to stay in quiet places and looking to different treatments to try to reduce my pain. I am still on able to attend parties, go to the mall, go to restaurants, eat in my kitchen, do normal activities at school such as going to art or the cafeteria, Watch TV on a normal volume, take a shower, use a microwave, and lots more. I have reached out to some of the researchers who are researching pain Hyperacusis and told them about my situation. I have decided that I want to dedicate my life to raising awareness and advocacy about Hyperacusis and getting accommodations in place for people with Hyperacusis and helping to inform the medical community about pain Hyperacusis. I have now started a Facebook page as well as an Instagram business page and YouTube called hyperacusis awareness to help educate policymakers doctors in the community about Hyperacusis. I also continue to closely follow Hyperacusis Research and want to participate in clinical trials for treatment of Hyperacusis once I become 18.