If three years ago someone had told me March 4th was World Hearing Day, my response probably would have been something along the lines of “that’s cool I guess…” without truly caring. At that time I had a diagnosis of spondyloarthropathy (a form of arthritis), but that doesn’t affect your hearing, right? I wouldn’t know it until several months later, but my world was about to revolve around audiology, otolaryngologists, and neurotologist appointments.
My experience with hearing loss has played a significant role in my becoming involved with YP AREA. It began one November morning as I was catching up on lectures from the week before. It was 2021 and I was a sophomore in college. Like most college students, my life revolved around school. Midterms were among us and my arthritis was giving me a very hard time like it had every fall, so I was feeling especially stressed. It was already 1 o’clock and I needed to rush off to make my 1:20 lecture across campus. I started to pack up my computer and notebook when, out of nowhere, I could only hear a static-like ringing in my left ear. At first, I thought I imagined it. I scurried out the door, thinking all was fine, but when I sat down for class, I knew all was in fact, not fine. I couldn’t hear a thing my professor was saying. I was in the front and he was standing on my left side, so it was pretty obvious to me that I truly could not hear anything from my left ear.
I called my parents after class who were equally as baffled as I was. My mom asked me seemingly endless questions trying to make sure I hadn’t had a stroke or seizure. I went home and played full volume music while holding my phone speaker directly up to my ear. Still silence. I was able to see a nurse practitioner at my school’s health center the following day who sent an urgent referral to ENT, whom I got an appointment with two days later.
“Profound sudden sensorineural hearing loss” is what they call it officially, but really, that just means you suddenly and completely lost your hearing with no explainable cause. My initial hearing threshold was 103 decibels. When referencing how well someone can hear, a lower decibel threshold means you can hear quieter sounds. Most people can hear sounds at 0 decibels. Whispering is about 40 decibels, regular speech is about 60 decibels, and concerts are about 100 decibels. In other words, this was about as bad as it could get. I was immediately started on the only known treatment for sudden sensorineural hearing loss: steroids. A week passed with no improvement, so I got steroid injections directly into my eardrum. This helped some in improving my hearing threshold, but I quickly reached the maximum dosing. By the time all was said and done, I had “recovered” to 70 decibels, but my speech recognition was only 15%. This means that even when things were loud enough for me to hear, my cochlea (the very inside of my ear) was still so damaged that I could not understand speech. Not even a high-powered hearing aid would allow me to hear.
The otolaryngologist I was seeing near my college campus then told me “I’ll follow up with you in three months if you still can’t hear.” Excuse me? I was just supposed to live like this for three months with absolutely no help? I was falling behind on my class because I couldn’t hear and had missed many classes for my appointments. My entire world was turned upside down. Most people do not understand the impact that only hearing out of one ear has on day to day life. I now use the motto “if I can’t see you, I can’t hear you” to assist in explaining how to make communication accessible to me. Having only one functioning ear meant I heard absolutely nothing unless the person speaking to me was on my right side. I entirely lost my ability to locate where a sound was coming from, and I could no longer filter out background noise. It was incredibly socially isolating, and I quickly found my mental health plummeting as I struggled both in school and in social settings as simple as watching a movie with friends. Along with that, I had people in my life making naive comments such as “but your other ear is fine, so it doesn’t really matter.” My only safe space was with my very closest friends, who were incredibly accommodating and went out of their way to make social activities as accessible as they could for me. Everywhere else, I was sad, frustrated, and generally going through a roller coaster of emotions knowing my life was never going to be the same.
Largely out of frustration with my situation and the lack of support I had received from my doctor, I looked up research about my condition and other treatment options. Surely there had to be something that would help me, right? I quickly learned there were special types of hearing devices that could be an option for me that hadn’t been presented by my first doctor. I made an appointment with a neuro-otologist near where my parents lived, and saw her over winter break. At my appointment, she was very realistic with me in saying that it was extremely unlikely my hearing would return. However, she also confirmed what I had read about! A special set of hearing aids or even a cochlear implant could be a good fit for me! Two months later, I got a special set of hearing aids called CROS (contralateral routing of signals). The hearing aid on my left ear picked sound up from my left side and put it into my right ear. This made me more aware of people speaking around me and lessened the need for awkward social repositioning, but I still struggled with terrible tinnitus, situations with background noise, and had no ability to locate where a noise was coming from.
Nine months later, after giving the CROS system a solid effort and giving myself time to focus on my mental health and adjust to such a large life change, I went back to my doctor and asked to try the cochlear implant. I’d read a ton of research myself and knew that many other people were having extremely good results with it, and it had recently gotten FDA approval for people like myself who were deaf in one ear. Cochlear implants are a much more involved option (requiring surgery), but it was the only thing that would allow me to sense sound out of my left ear.
On March 15, 2023, a year and a half after I first lost my hearing, I had cochlear implant surgery. Having surgery mid-semester made for an incredibly hectic time, but I have absolutely no regrets. Minus some minor issues related to my arthritis, surgery went very well and I had my implant “activated” (turned on) a month later. It’s not perfect and I still have some difficulties with background noise, but overall my quality of life has improved dramatically. I have significantly less anxiety surrounding social situations, and I really appreciate the ability to control the noise level so it doesn’t get too overwhelming. My tinnitus isn’t noticeable when I wear it and I have about 75% word recognition right now; this number will only improve as I have it longer and wear it more. Stay tuned on the YP AREA blog for more information about cochlear implants, but to sum it up, I can hear in my left ear!
If it weren’t for my own information seeking and advocacy, my life would look significantly different. My cochlear implant has helped me build confidence despite my hearing loss and challenges it comes with. My own ability to read and understand research using skills I learned in school put me on this path, but I realize not everybody has the time, resources, or skills necessary to truly understand or participate in research. That is exactly why I joined YP AREA: to help make research more accessible to young people who might otherwise be unable to access it.
So, happy World Hearing Day. I feel extremely grateful for my friends, family, and medical team who have helped me through one of the biggest challenges in my life. It took a significant amount of time and effort, but I’ve found my village, learned to advocate for myself, and learned a whole lot about hearing through this experience. Everybody’s experience with hearing loss is different, and there is no right or wrong way to react. Some will choose to proceed with hearing devices. Some will learn sign language. Others will do both. It’s an incredibly personal process, but ultimately, people with hearing loss deserve access to communication: that’s what is most important.
