My name is Jemma-Tiffany. I have a rare condition called hyperacusis. My childhood was very different than most kids, I have been unable to attend social events, stores, 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 love books, when I was younger I would often be resting due to pain, and I would listen to books on volume 1. I have enjoyed making up stories ever since I was little, I would act out stories with my dolls.

Most of the time I would, still do, stay in my soundproof bedroom, closet, or grandmas underground basement. Imagine that silverware touching a plate felt like being stabbed in the temple and ear, and people talking and laughing felt like being punched in the head, and getting a migraine afterward. I also have several other medical conditions including: legally blind, chronic migraines, and seizures.

Unfortunately most doctors didn’t believe that I was in physical pain and thought that I had a psychosomatic condition, as there is very little research on pain hyperacusis. As a result, I was often subjected to sound exposure treatments that increased my pain and worsened my hyperacusis.

I have been on Home & Hospital many times, and attended several different educational placements. The school system has been unable 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 lingering migraines from noise.

In the sixth grade, I attempted suicide, as I could not bear the pain and misunderstanding of others associated with my hyperacusis. I ended up in a psychiatric hospital, and they didn’t make any accommodations during my stay. I was forced to participate in activities all day with kids constantly screaming and banging. I was exposed to loud music, movies, guitars, vacuum cleaners and much more, despite altering staff that I was in extreme pain. It felt like someone had broken the bones in my skull and my ears felt like they were on fire. I was discharged with a sound exposure plan, which was very painful for me. For the next two years I begged God to please do something to ease my pain.

I realized I needed to write a medical research based argument for my doctors and parents to stop this treatment. I did a lot of research and just before my 12th birthday, I wrote my first medical argument. The next three years, attending school was still intensely painful for me, and I attempted suicide again in eighth grade. I was sent to the ER, and I prayed hard that God would prevent me from being hospitalized, and help me to have a less painful life. I promised God, if he would do this that I would get baptized and give my life to him. God worked a miracle, and not only prevented me from being hospitalized, but provided me with enough medical research that I showed to convince my doctors and parents not to do sound exposure. I kept my end of the promise, and had a private baptism.

Despite continuing to endure intense pain from noise, God quickly began to pour out blessings into my life.

The summer before ninth grade I published a short story on Wattpad, called The Moonstone Girls.  I joined a hyperacusis Facebook group. I discovered Hyperacusis Research, a nonprofit organization dedicated to finding a cure to pain hyperacusis.

In ninth grade, Hyperacusis Research published several articles about pain hyperacusis. This new research helped my doctors and adults in my life to start to understand my hyperacusis better. I began to write more research papers to my doctors in favor of sound avoidance, citing Hyperacusis Research.

I began my first novel with plans of formal publishing called, Alien Princess. It is a sci-fi story, but the main character has hyperacusis.

In tenth grade, I started working to try to get Maryland to create a school program for students with hyperacusis. In February, I was given a chance to talk about being a student with Hyperacusis, in front of the Howard County Department of special education and make recommendations.

Once COVID-19 quarantine began I’ve been able to stay in my bedroom and closet most of the day and been in less pain, and do a lot more. I created a Hyperacusis awareness: website:https://hyperacusisawareness.wordpress.com/  to try to help people with Hyperacusis. My hope is that my books will be able to touch other young people like myself who have rare/painful conditions, and raise awareness about hyperacusis, put in place laws to accommodate those with hyperacusis, and push for more research to be done on hyperacusis.

I believe that God has used my Hyperacusis to teach me how to put my faith in him, as well as how to stick to and fight for something you know to be true no matter how hopeless the circumstances. To anyone living with Hyperacusis or any type of chronic pain/rare disease/ environmental illness, remember that you are the expert in your own body. Continue to fight, continue to research, and continue to try to educate your medical professionals, friends, family, and community. Above all, pray. You may not know it now but your simple existence is helping to educate and raise awareness about your condition to make things better for those who come after you.

I am so thankful to God for everything that he has done for me, my experiences have shown me that he truly can perform miracles.