Tales of a Deaf Musician

My story doesn't start here but I think it's the best place to dive in to explain why I am who I am and it leads to a gateway for my next story. This is my story. My honest truth. I talk about some sensitive matters and everyone has their own side of a story this just happens to be my own.

My name is Delainey and I am 23-years-old. I love music, videogames, reading, and my service dog Boston. I'm a preschool teacher and absolutely adore my job. I've led an interesting life a bit out of what would probably be considered the norm.

When I was seventeen-years-old I was diagnosed with moderate to severe hearing loss. I was at the start of my senior year in high school. I should have been enjoying my senior year and hanging out with friends but in all honesty, I didn't have any. I didn't fit in. Instead, I was freaking out about losing my hearing and thinking I could no longer be a musician.

(It is important to note that I refer to myself as Deaf and not hearing impaired. This is a cultural aspect of Deafness and although I had no pride when originally diagnosed I could not be more proud to call myself Deaf and to be a part of the Deaf community.)

On October 31st of 2014, I was diagnosed with severe hearing loss. My world crashed down around me. I honestly thought I was going to die. I am a musician. Music is my life. How was I supposed to go to college to study music if I can't even hear?

Shock and sadness came with the news but also relief and acceptance. For so long I had been wondering what was wrong with me. Why was I so different and why couldn't I fit in? All these questions were now answered. I couldn't hear.

The world around us is a very hearing centric world. There isn't much room for Deaf people and if we want to be seen we have to scream. I was attending a mainstream school with thirty plus kids in a classroom. No one noticed I was struggling but me. I was mostly a straight-A student but that was because I had no life outside of school. I involved myself in ventures such as studying, reading, practicing music, and playing video games. I definitely wasn't participating in any social extracurriculars.

My grades really started to slip during my junior and senior years. I could only lip-read a teacher when they were facing me not when they are at a board or turned away. With most of my residual hearing on its way out, classes became harder and kids started to bully me more often.

I was fourteen the first time I noticed the hearing loss. I was practicing piano and having trouble hearing some of the notes. I thought the piano was broken. I started to complain to my parents that I didn't feel like I was hearing correctly.

My parents took me to several doctors all of whom MISDIAGNOSED me with bilateral ear infections. Every doctor said the same thing: "When the ear infections clear up your hearing will come back". What we know now is that I have TMJ (grinding of the jaw) and that caused swelling and redness in my ears that doctors mistook for infections.

It took over three years, several different doctors and my mom having to send my dad in with me since the doctors wouldn’t listen to her. We had to get a referral to see a specialist at the time because of the type of insurance we had. My dad and I saw a medical student who thought something seemed off with my ears and wrote us the referral to finally see an E.N.T (Ear, Nose, Throat) doctor after my dad insisted that we see a specialist.

Knowing what we know now, we can trace the hearing loss all the way back to elementary school. I would often get in trouble for not paying attention or repeating the same question someone just asked. The diagnosis set off multiple light bulbs. Finally, we understood. We now had an explanation for all my struggles.

While I was sitting in the waiting room the E.N.T came out to deliver the results. The diagnosis came in the form of a graph. It was explained to me where my hearing should be at, and then the doctor pointed to a much lower part of the graph and explained that was where I actually scored. He didn't say it sadly or with support. He did it just as stating facts, I was nothing important I was just another patient with hearing loss that he was going to slap some hearing aids on. He spoke quickly and then left us in the waiting room not even giving us a chance to ask questions. It took me only a few short seconds for it to hit me. I needed hearing aids. I was never going to play music again. I was never going to hear again. The tears came thick and fast and wouldn't stop.

After the diagnosis, many people had to share their opinions. People would see me and look at me with sorrow. They’d apologize saying, “Oh Delainey, I’m so sorry.” That sentence crossed what felt like thousands of lips. I’ve read that line so many times, lip-reading it has become so familiar now. Six years later that phrase is still a constant in my life. Having all these people tell me how sorry they were was hard enough but some people went beyond that.

My mother would say she felt like it was a game for some people. "Well, I'd rather be deaf than blind, so look at it that way." "It could be worse you could be blind." "You poor girl you can't do music anymore. All that talent wasted." "Music was your life what are you going to do now?" Each statement drove a dagger deeper and deeper into my heart. Why would it matter if you would prefer to be deaf? I wasn't given a choice, there were no options. This just happened to me. There was so much sadness, frustration, and anger. People meant well but a lot of what they said just made me feel lost and dejected.

After a few weeks, when people told me how sorry they were and how sad it was that I couldn't do music anymore, I found myself nodding in agreement. I found truth in their words and started believing them. I was clearly no longer capable of creating music. My musical gifts were wasted on someone who could not hear. I sank deeper into darkness and misery.

Shortly after the diagnosis, I quit vocal lessons and attempted to quit piano. Quitting piano didn't work out so well for me. My teacher, who is one of the most amazing women I have ever met refused to accept me quitting. She slapped me upside the head and hugged me. "You're not quitting. You've been doing this far too long to quit. You love the piano too much to quit." She was one of the only people besides my parents that told me I could and I should continue music. I'd been with her ten years and knew her even longer. Her support kept me sane.

I didn't play piano for months after the diagnosis but she would sit with me and play the piano for me and talk about music and practice music theory. She accepted I needed to step back but she never allowed me to quit, and I thank God for that. She had me play at my last recital. I severely mangled the piece because of how nervous I was. I bawled my eyes out and she wasn't even angry with me. She was proud of me for getting up on that stage just a few short months after my diagnosis and trying my absolute best.

What little support I had felt like it was completely wiped out by the responses of my family. Family members had no problem sharing their disbelief. My grandmother on my mother's side questioned it to the point where she even said she didn't believe I had hearing loss. I don't know if she thought it was all in my head or if she believed I was lying but either way, it was very hurtful for me to be going through such a huge life change and not to have that support. My grandmother on my other side didn't know how to respond so she just laughed stating that we know other people with hearing loss. I had one grandmother who made me feel completely hopeless and the other made me feel unimportant. I'm sure neither meant harm but it hurt me badly to not have that support.

I was alone. I had never felt such loneliness in my life. A large portion of my family wasn't supporting me, I didn't have any friends and now my life was just mostly melancholy silence. Months later I would take a brain test that would prove how severe my hearing loss was but none of that mattered. I had proof of something I already knew to be true so it didn't really matter to me the results. I just needed to not be alone. The sadness that found its way to seep in was becoming worse as each day I lost myself deeper into depression, anger, and what felt like inescapable loneliness. It felt like the world around me was restricted and I did not have access.

When I finally received my first set of hearing aids it was one of the most amazing days. They were a practice pair and I picked up on the sounds of a door closing and papers rustling; both things that I forgot even made noise. I was so excited to try on the practice ones that my audiologist didn't have the heart to take them from me and she let me take them home until my new hearing aids arrived.

My hearing aids HAD to be blue. The only way I would wear them was if they were my favorite color. The hearing aids, though an amazing tool, were really only useful the first two years after the diagnosis but we will move on to that in a later post.

With my hearing aids equipped, I returned to school only for the bullying to become worse. Kids started to pull my hearing aids out of my ears. Other times they would run to the bathroom and pretend to flush them. Once in my A.P government class, one of the kids called me a moron for repeating a question just asked and the teacher did absolutely nothing to stop their laughter.

After the school didn’t take the bullying seriously my mom decided to get involved. After she threatened to show up every day if the school didn't fix things they finally reached an agreement. They would not offer me disability services instead they would allow me to graduate early. Honestly, they just didn't want to deal with me or my mother any longer.

I graduated in December of 2014, just two months after the diagnosis. Already my world was changing drastically because of the hearing loss. I now no longer had to attend school and even though I had plans for college they definitely weren't the plans I originally had. My whole senior year and part of my junior year I was doing early college where I attended half the day at high school and then I went to college. I had plans to join a music program that I had auditioned and been accepted into. Everything had changed though. Going to school for music was no longer on my radar and my life which once was filled with singing and sheet music was now filled with silence and longing glances at my unplayed instruments.

On my birthday, June 2nd, I had another hearing test that I failed even more drastically than the first one. My hearing aids were modified to fit the new hearing test but I just felt hopeless. I could not wrap my head around why this was happening to me.

Even after a few months, I wasn't doing any better. If anything I was getting worse. I had never been so alone and at this point, I was starting to believe life was never going to improve. I began learning sign language as a way to cope and try to better communicate and understand my disability better.

Sign language opened up so many opportunities for me that I will talk about in my next post. I will also talk about what it was like working before heading off to school and I'll touch on the journey of getting my service dog. She was the real game-changer in my life. She brought me peace and friendship.