My life has lost all meaning. I spend almost my entire day inside a bedroom at my father’s house. I go outside only occasionally wearing double hearing protection for fresh air and to walk up and down the driveway to get some exercise. All I can do is hope that in time I can heal again and get back to my children in some capacity.
Growing up, I developed a deep love of music that came from always being surrounded by it. My maternal grandfather always had oldies playing on the radio. My mother was a huge Rod Stewart fan. When my father would pick me up every other weekend, we’d listen to ’70’s rock. My paternal grandfather played guitar and sang at family gatherings.
My own personal tastes as a child were ’80’s hip-hop and early ’90’s grunge rock. As a teenager, I got into playing the drums for several years, then transitioned into hobbyist music producing and audio engineering. When I was old enough to drive, one of my first purchases was a set of 10-inch subwoofers for my car. Music was my one true passion, until I became a father.
Being a father was the greatest experience of my life. It gave me new meaning that transcended anything I thought defined me before. I have three amazing children, now of primary-school age: a son and boy-girl twins who are two years younger.
We were an active family and every day was an adventure. We traveled to museums, parks, nature centers, splash pads, play cafes, zoos, and everywhere else where fun and learning intersected.
One summer day three years ago, I went to Lowe’s for supplies needed for yard work at my mother’s house. I was going through a contentious divorce.
I was feeling pretty good for the first time in ages. I was out of town, away from my standoffish wife. I was listening to the radio while I drove and decided to really crank up the music to further elevate my mood.
That decision was a turning point that thrust me into a world of aural misery. During those few loud minutes, I felt a snapping sensation in my right ear.
The next day, driving home from visiting my mother, I was hit with tinnitus.
Over the next few days, I noticed that background sounds were becoming consistently louder. My tinnitus would then react to those sounds, increasing in volume until it overshadowed any sustained noise in my environment. I was unable to sleep for more than 15 minutes a night, when I would nod off from sheer exhaustion. I was hitting the point where I was struggling to function in daily life and to care for my children.
Desperate, I began searching for help restoring sleep. I was given a variety of medicines that only made my symptoms worse. My tinnitus became so loud it seemed to emanate from my environment, not from my ears. I also had hyperacusis, which worsened to the point where sound lost almost all dynamic range. Everything seemed practically the same volume and was sensorially overwhelming. I struggled to get my bearings, with the most basic of tasks becoming especially difficult.
I also experienced periods of extreme ear fatigue accompanied by a raw feeling throughout my ear canals. It felt like a chisel was being run back and forth through my head. Certain sounds were coupled with distressing physical sensations: The hum of the air conditioner felt like it was drilling into my skull.
Thankfully, the symptoms receded somewhat as the many drugs I’d been given left my system. I was finally able to find one that allowed me to sleep and didn’t aggravate my tinnitus or hyperacusis. I decide to ask my mother if I could live with her for a while because I had quit my job as a service coordinator for people with intellectual and developmental disabilities, and wasn’t able to pay my bills. I was grateful when she agreed.
I began researching online and coming to better understand my hyperacusis. To give myself the best chance at healing, I used extra caution. I started wearing hearing protection to do household activities like cooking, vacuuming and running the garbage disposal. I stopped doing most things that exposed me to artificial audio, limiting myself only to brief phone calls of absolute necessity. I barely left the house, and wore hearing protection everywhere except the park.
After a few months of adjusting to my new lifestyle, I began commuting from my mother’s house to my ex-wife’s new place to take care of the children. When the Covid-19 lockdown struck, we made an agreement that I would move in to take care of the children full time in exchange for room and board. While I was still doing poorly, it was great to be able to reunite with my children on a more consistent basis.
Slowly, over time, many of my ear-related issues began to improve. My tinnitus quieted considerably. My issues with experiencing sounds as too loud and lacking dynamic range went away entirely.
Unfortunately, even as those things were improving, I began experiencing a new issue. I started feeling physical pain from noise. It was mild but still debilitating. I would feel burning pain in my ears plus aches combined with a cool menthol sensation along my left jawline. At times my upper teeth would ache and have shooting electrical pain. Roughly a year later, this issue became dormant and I no longer experienced pain from noise.
After two exhausting years since my issues started, I was finally able to return to a more normal life, at least in some ways. I began going into stores to shop instead of ordering everything online. I started watching television and listening to music at low levels. I was able to take my children to places other than remote parks.
At this point, I was wearing hearing protection only at loud places and for loud household chores. On my typical outings and in day-to-day tasks, I had no issues when not protecting.
Unfortunately, I had a false sense of security.
A year ago, I went to a store. As I shopped, the clerk turned on some music. I checked the decibel level with a sound meter app on my phone. It registered around 55 dB. That level seemed — and felt — perfectly safe to me, so I continued to shop for about 15 minutes. Within an hour of leaving the store, my ear pain and jaw pain had returned.
I had experienced setbacks with my pain hyperacusis before, but this one was completely different and brought me to my knees.
Previously, I had a threshold of worsening that I never exceeded when it came to pain and sensitivity. After a setback occurred, I would limit myself to what had always been acceptable soundwise, and within days or weeks I would recover. This time I kept getting pain from unexpected activities and my tolerance level would reduce further. Gradually, over the next few months, it whittled away until I bottomed out completely.
Now I have pain even in quiet settings. I must wear hearing protection 24/7 and isolate in a bedroom alone. The pain has become exponentially worse, and often lasts for days. I feel it in my ears and sometimes in my entire face.
I tried to recover at my ex-wife’s townhouse. During those months, I had to limit my interactions with my children to the bare minimum.
While my children aren’t particularly loud, my twins occasionally scream. All my kids regularly watch videos on their iPads and play video games, but now I’m completely unable to tolerate artificial audio. I was unable to take them on any outings and could no longer drive them to school. Finally, my ex-wife ordered me to leave. I had to move in with my father six hours away from my children.
Things continued to take a turn for the worse. My pain hyperacusis is now so severe I can barely talk or whisper. I can’t even video chat with my children with live captions enabled. Our only form of communication is texting. I am once again unable to be a provider or caretaker to my children.