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.
A year ago I was incapable of imagining a future where I could be happy. The mere idea that I could be happier than I have ever been was so far off the radar that that idea didn’t even know what a radar was. But here I am. Teaching idea about radars, and with a capacity for happiness that I have never known.
I still have tinnitus and hyperacusis, though it isn’t as severe as it was initially. That counts for a lot. Having dived deep into the community of people who are afflicted with these issues, I believe that the severity of the symptoms can directly correlate with the quality of your life.
I can’t overstate that my recovery from this crisis was the result of the work I put into it and the support I received. There were so many people, modalities, and events which contributed to my recovery. The love I got from my family and friends was what propped me up.
Discovering that I could still work on my music was a pivotal point for me. I believed for a while I had to leave that part of me behind. I probably would have eventually grieved sufficiently and moved on, but it would have taken a lot longer.
I’m not physically strong. For the first time in my life I do perceive myself as weak. I’m learning how to show up powerfully. After putting so much work tearing down the barriers that separated myself from my emotions, I’ve discovered that life is so much richer. It’s not always happy and easy, but it is intense and fulfilling.
Through The Men’s Circle I discovered that connecting deeply with people, being authentic, vulnerable, and opening deeply nourishes me. It was missing in my life, and I didn’t know it. These skills need to be modeled and practiced over and over again to develop fully. I’m improving at respecting my limitations and undesirable reflexive behaviors. I was also lonely, and now I am not. I feel seen. I’m so lucky to have found this support structure, along with my amazing coach, Adam Coutts. I’m also extremely grateful to have a partner in life who supports me in these investments.
Due to this personal growth, I’ve started showing up differently for other people. And to be honest, some people don’t enjoy it. It’s a new muscle I’ve started to develop, and I need to learn when it is appropriate to flex it. On the other hand, when it is well received, the richness of these experiences fills me up.
I still find myself getting angry or depressed about tinnitus and hyperacusis. What I’ve learned is that the healthiest thing to do is to feel into in those painful emotions instead of reflexively pivoting away from them.
There are still limitations and sacrifices in my life due to my hearing issues and physical pain. It sucks that I have to wear earplugs or a headset in most situations outside of my house. I unlocked something critically important about my life though, and I doubt I would have gotten there had I not been through this crisis.
If nothing else I want to be an example of someone who was transformed for the better from getting tinnitus and hyperacusis. I’m shocked as anyone else, but there it is. I know what it is to feel broken. I know what its like to simply have to put one foot in front of the other, because people depend on me. A little hope during my descent into darkness would have been very welcome.
It turns out there are a few treatments for tinnitus. Most of these treatments involve sound therapy, where the ultimate goal is to help retrain your brain to tune out the tinnitus. These therapies have been shown to be effective for some percentage of people with tinnitus – probably less than 50%.
So I recently finished it, and put it up @ http://www.generalfuzz.net/acrn/
If you have tinnitus, give it a whirl. It’ll cost you nothing. It may or may not be exactly the same as the $5000 ANM ACRN treatment, but it should give you a good idea what it would be like. I’m always open to suggestions/feedback to improve the project.
I’m both proud and relieved to report that I’ve turned a corner in my life. I have trudged through the darkness and come out on the other side.
In many ways, this was my first true crisis. I didn’t believe that life would get better. My condition is likely permanent, the options in my life narrowed, and many ordinary life situations became more challenging. I was unable to see the path forward, so I just kept putting one foot in front of the other, since people depended on me.
The tinnitus bothers me more than you can imagine. It is no longer the bane of my existence though. I am adapting, re-aligning, and rebuilding my life with my new limitations. I’ve discovered that I am capable of being happy again. I am not happier than I was before tinnitus, but I am certainly stronger.
Friends are now telling me that I’m looking better, and that is an honest reflection of how I’m feeling. It has been the slow turning of a giant ship, but it has most definitely turned.
How did I get to this place? By having an amazing support structure and trying a many different things. Here are the things that made a significant impact:
I saw an awesome and very compassionate cognitive behavior therapist. He helped me understand that my automatic reactions and behaviors to challenging situations can be changed. I made thought log after thought log under his tutelage, and it became very clear that my behaviors were cyclical and predictable. We worked on better coping responses to my automatic thoughts, and over time I was able to monitor my automatic thinking and graft in these new responses reflexively.
Friends and family really stepped up. They saw I was hurting and needed help, and supported me in any way that they could. Most of that was just hanging out and being present for me. My parents and in-laws came out to help multiple times. It made a huge difference.
I joined a men’s support group called the men’s circle. It has been a transformative experience, and the circle has become a big part of my life. It has pushed me hard to lean into my edge, live my life with purpose, and to be in support of my community. It is not often that you make a lot of new personal connections that have nothing to do with your kids when you a parent in your late 30’s. Getting initiated into the circle was a herculean task that I take a lot of pride in completing.
I moved into a new home. The timing of the move was perfect. It gave me an opportunity to re-establish my identity. The packing / unpacking / house projects filled up all my time so I had less time to wallow in my circumstances.
We determined that physical weakness is a big issue for me, so I started working with a personal trainer. It’s amazing how quickly I’ve gotten stronger, and now my knee pain is much less intrusive than it has been.
I saw a naturopathic doctor who told me my diet was really out of balance. For some reason, this advice really stuck (possibly because I paid $350 for the visit). I eat far more fruits and vegetables now, increased my protein intake, and for the most part try to avoid unhealthy food.
But really, the thing that made the biggest impact was my wife, who was my rock. She never gave up on me. She guided me to try CBT, pushed me hard to join the men’s circle, frequently checked in with me, and insisted that life would get better. She challenged my attitudes and assumptions. She made sure that our life was on track, burning her candles at both ends, and never complained. This experience really tested our relationship, but she was determined to make it work. I am so grateful that she chose me as a partner. At this point, I probably owe her two ponies.
For the record, here are things that I tried that didn’t stick:
Mindful meditation and breathing techniques. I may return to this though – it seemed like it had potential.
I saw a homeopathic doctor a couple times, and I tried a few homeopathic “remedies”.
I tried a few different modalities for body work and chiropractors. I went so far as to try NUCCA adjustments.
I attended several tinnitus support meetings. I was the youngest person there by 30 years, and simply didn’t take away much from the meetings.
Extreme diets to see if salt or sugar affected my tinnitus
A surprising discovery is an latent interest in nature. I’m really excited to discover more of the beautiful spots in the bay area, of which there are many. I would like to do some hiking when my knee is up to it.
Also, I have dipped my toes back into music, and have found that it is still available. That part of my life is not over, but my relationship to music has definitely changed. Several close friends independently told me that its ok to take a break from music. There is definitely truth in that. I think I will just casually play music when I’m feeling motivated, and see where it goes. I do have a seventh album that needs wrapping up, but it may be awhile until I finish it. Rest assured, general fuzz will ride his melodic unicorn once again.
If you had asked me a year ago what my future would look like, I could have responded pretty quickly. I feel like I had reasonable handle on how my life would unfold. Today, I am unable to do so. Sometimes life veers sharply from the anticipated path, and unfortunately that is exactly what happened to me.
Last July I tore the meniscus in my left knee while doing a fairly routine yoga pose – one that I had done hundreds of times before. It took four months to get this diagnosed properly. Somehow this initial injury transformed into bilateral knee pain, which I experience primarily while sitting. I’ve seen a number of doctors and specialists trying to understand the underlying issues behind the bilateral knee pain, and to date, have made little headway on diagnosis. I also am not sure what is the correct path for resolving this issue.
In the course of seeing different specialists, I saw a sports medicine doctor near the end of 2012 who prescribed an NSAID called “Relafen” to see if would reduce the pain. The drug seemed to have some minor positive effect. After taking it for two weeks, I became aware that I had tinnitus – non stop ringing in my ears. I immediately stopped taking the drug, but it turned out the damage was done. The tinnitus is intrusive and permanent.
Tinnitus is truly the worst malady I’ve ever had to deal with. Compromising my hearing, which is my primary sense, has been a deep psychological blow. There is no cure for chronic tinnitus. The treatment options are limited, expensive, huge commitments of time (2 years+), and results are mixed. Habituation is the only ultimate goal. I will likely live with this condition for the rest of my life – and it can get worse.
For the first couple of months, anxiety ruled my existence. I lived in a world of despair, disbelief, regret, and hopelessness. With a lot of support, I pulled through that phase into a more lasting and deep depression, which I’m attempting to deal with right now.
I’ve added a lot of new mechanisms of support in my life. For the first time in my life, I’ve really asked for help from family and friends, and they have all stepped up. My wife has been my anchor while I weather this storm. She has been extraordinarily patient, caring, consoling, and supportive. I’m seeing a cognitive behavior therapist, joined a support group, and am leaning hard on anyone who can offer support.
My life going forward is markedly different from my life before tinnitus. There is no way to continue living the way I was – there has to be a lot of compromises, sacrifices, and behavioral changes. I now avoid places and events that are loud. Going to rock concerts, a favorite former activity, may be a thing of my past. The few times I’ve tried to work on my own music, the ringing in my ears intensifies, and it ends in tears. Critical listening, the skill set I’ve developed and honed for the past 20 years, is frustrating and painful. I’m currently unable to engage in things that I was most passionate about.
I’ve never experienced this level of mental suffering before. My knee issues remain unresolved. Tinnitus is going to be part of my life going forward. Hopefully I will learn to manage it better as time goes by. The good news is that there is no obvious hearing loss or balance issues. In theory, I should be still able to create music. For the time being, I’m taking a long break from my music projects. I might dip my toes in from time to time to begin building a new relationship and methodology for creating music. I had a lot of new album put together prior to the end of the year – I will certainly get around to finishing it at some point in the future. Of course, it will represent a very different time in my life.
I am keenly aware that things could be much worse. I still have so much to be grateful for. Yet, this is my reality, and I have to face it, and it is really hard. I do not have the option to stop being a father, husband, or provider for my family. Even though tinnitus is a fairly isolating affliction, I am not doing it alone. The future is intimidating and scary, but I’m old enough to know that how I feel right now does not represent how I will always feel.
I will emerge stronger from facing this.
I will find happiness again.