By David Vance
In 2017 I was diagnosed with lymphoma, a type of blood cancer, and went through chemotherapy and radiation for a duration of six months. Three quarters of the way through radiation, I noticed that my ears started to have a mild ringing and would not go away. When working as a musician for years, rapping, I would leave events with my ears ringing from the loud music. Waking up the next day, it was all gone, but this time it was not the case.
Following my cancer treatment I went back to work as a server, and after a few weeks in, chatter in the restaurant was loud and the clanking of dishes was bothersome. I saw a doctor to check for an ear infection and was told that yes, I had an ear infection.
But it never went away, even with antibiotics. This left me clueless as to what was going on.
I went to see a different doctor and was told that I had no infection, but that maybe the reason why my ears were ringing and I was sensitive to sounds was from having TMJ (temporomandibular joint) dysfunction.
I found a specialist and was assessed. After doing an MRI, the physician told me that my jaw joints were slightly off. He prescribed medication to relax the muscles in my face, to see if it would help. The medication worked, wiping everything away entirely—only for everything to return again two weeks later.
I moved to the quietest part of the restaurant, the host stand, to continue my job. After nine months of pushing through, I could not push anymore, and that (in 2019) was the last time I worked at a physical job.
I still had no clue what I was going through. Doctors said that my auditory symptoms were present because my jaw joints were misaligned and because of chemo.
I looked online and found people going through the same thing. Apparently what I have is pain hyperacusis and reactive tinnitus. I get pain from everyday sounds. The pain can be burning, aching, stabbing, etc.
Almost every sound sets off my tinnitus as well. And then I read that there was no cure for either. I found an organization online, Hyperacusis Research, and started to read some of the patient stories on their website—and finally I found people like me.
My family didn't understand what was happening. I was a recluse and still am to this day. I was looking for more information online, but could not find it. I wanted to relay to everyone around me what I was going through in detail.
So I started my own awareness outreach to help explain. I even had media outlets reach out to me to do interviews. With no hesitation I agreed to partake in order to try to get the conditions better known on a larger scale, such as on an NPR podcast.
Getting through cancer was difficult. My oncologist assured me that I could still live a healthy life following treatment since I was young, age 35. But for me, cancer was a walk in the park compared with hyperacusis and tinnitus.
I was able to 90 percent live my life while dealing with lymphoma but with hyperacusis and tinnitus, the sounds of even the bathwater sets me back and potentially creates more damage that is permanent. I’m locked between four walls from sound, and it is no way to live.
To cope, I use meditation to try to keep myself grounded, forget about yesterday, forget about tomorrow, and try to live each moment, the best I can. So when my head hits the pillow each night, the day was a success.
I do guided meditations on YouTube with subtitles and no sound. These are two favorites: Healing Chronic Pain and Clarity & Guidance.
I also do meditation for anxiety in silence with my eyes closed, sitting in a comfortable position. I pinpoint why I am having anxiety (“Ears are sore”). My judgment about it (“It's not fun”). The story around it (“I had a phone call for too long, with sound”). The next step (“Rest for the remainder of the day/week/however long it takes me to feel better”).
Since I am not able to rap anymore I also write poetry, and this gives me a sense of purpose and helps me to stay creative and release my emotions.
As I work to raise awareness, like with this story, it is positive feedback from fellow sufferers, their families, and friends that helps me to keep the momentum going. To know that I am still doing something good in this world warms my heart, and it goes both ways as speaking with other sufferers also helps me to get by, to know that I am not alone.
I also remind myself that I have gotten through each challenging day over the past six and a half years. I wear protective earmuffs and plugs 24/7 as every sound causes me pain and risks worsening both my hyperacusis and tinnitus. Time and quiet heals.
The journey has not been easy. Having hyperacusis and tinnitus has taught me that every human on earth has a different mission. Some people have things easier, some harder. We are all on our own unique paths. These are the cards I have been dealt, and I try to work with them every day, the best I can.
David Vance lives in Ontario, Canada.
I wanted to create a story that not only celebrated the beauty of differences but also conveyed the importance of empathy and understanding. My heart was set on crafting a tale that could empower children with hearing loss while also educating their peers about the significance of inclusivity.