When Hyperacusis and Tinnitus Turned My World Upside Down

A few years ago, prescription medication damaged my hearing. I now have tinnitus, which is a constant ringing in the ears, something you may have experienced temporarily after seeing a concert. I also have hyperacusis, an uncommon condition where loud or percussive sounds physically hurt me — and aggravate my tinnitus. This means I am vigilant about protecting my ears, wearing earplugs or a headset virtually all the time I am not by myself. It turned my world upside down.

When this first happened, I went into crisis. It felt like my life was ruined. It took me about a year to wade through that, to get past the put-one-foot-in-front-of-the-other stage. I eventually discovered I am still able to fully participate in my life, just not in the way I had envisioned. There are a lot more hurdles for me than there used to be, and a lot more sacrifice.

I still collapse about my hearing from time to time, though the frequency is decreasing. I get sad and angry about letting go of so much I once had. At my worst, when all the raw sadness and anger bubble up to the top, I feel like I want to fold in on myself until I do not exist. Returning from that raw place usually involves talking a lot with friends. One of the skills I developed through being in a men’s group (which I never would have joined had I not had my hearing crisis) is reaching out when I need help. It also involves recognizing that these overwhelming feelings are rooted in my younger self, and then having compassion and love for that person. I truly understand what he is feeling. My adult self has a better perspective. I list all my blessings, and I sit with them, knowing that otherwise I would take them for granted. I practice gratitude. I try to notice all the things in my body that are working well. When I am my strongest self, I comfort little James. Then I try to pour some of that compassion and love into my life and into those I am lucky enough to share it with.

There are some things in my life I can no longer participate in, like events and gatherings that involve my family and friends. It sucks. There’s no getting around that. But there is so much I can do. I’m glad I can still make music, and that is because I control the volume knob in my studio. It took me over a year to find my way back to music.

There are still times when I’m around my son or small group of people without any hearing protection, and then something funny happens and we all laugh. I experience the initial joy of the moment immediately followed by the pain of the sound. Then the ringing in my head gets louder and captures more of my attention. It is hard to sit with. It is not something anyone I know has experienced before, and that is isolating.

I am stronger now, and quite frankly, much more satisfied with my life than I was before tinnitus. Before my hearing issues, I spent a lot of time searching for things to do, constantly feeding my need to be engaged with an activity. I hadn’t considered what I really needed was more stillness and depth to feel more fulfilled with my life. I’m able to access my emotions more, and feel far more present in my life and my family. Overall, I’ve never been happier to be alive.

Follow this journey on General Fuzz.

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