A few years ago, prescription medication damaged my hearing. I now have tinnitus, which is a constant ringing in the ears. This is 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 that I am able to still fully participate in my life, just not in the way that I had envisioned. There are a lot more hurdles than they 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 about letting go of so much that I once had, and angry that I feel like I’m too young for this. 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 it is that he is feeling. My adult self, has a better perspective. I list all my blessings, and I sit with them, and know 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, and then try to pour some of that compassion and love into my life, and into those who I am lucky enough to share it with.
There are some things in my life that I can no longer participate in. Events and gatherings which involve my family and friends. It sucks. There’s no getting around that. But there is so much I can do. I feel so incredibly blessed that I can still make music. I control the volume knob in my studio, which really works for me. I struggle making aggressive loud music, even though that is what I want to make sometimes. Today I find something something beautiful about that.
I am grateful that I have a milder form of hyperacusis. For many sufferers, it means complete isolation. That is not my life.
There are still times when I’m around a 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 very 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.
Now, almost four years later, my wife is really starting to properly grieve the sacrifices in her life that my condition brings. I am in a pretty solid place, so the time is right, but it is definitely reopening some wounds. For years, the focus in our relationship was on me. This year has been her year. She’s had a couple independent international traveling adventures, started a new job, building new communities, and adding in new support structures. I believe that next year will be the year of us, with more focus on nurturing our family and community.