Categories: family, open source, personal projects, tinnitus, woo
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tinnitus

Tinnitus

June 13, 2013

In 2013, I felt like I had reasonable handle on how my life would unfold. I had an established career, a stable marriage, a small child, and a hobby or two. Sometimes life veers sharply from the anticipated path, and unfortunately that is exactly what happened to me.

In 2012 I tore the meniscus in my left knee while doing a fairly routine yoga pose – one that I had done hundreds of times before. Over the following year, it transitioned into bilateral knee pain, which I experience primarily while sitting. In the course of seeing different doctors, I saw a sports medicine doctor near the end of 2012 who prescribed an NSAID called “Relafen” to see if would reduce the pain. Nothing else was working, so it seemed like a reasonable option. The drug seemed to have some minor positive effect on my knee pain. After taking it for two weeks, I developed 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. I also developed hyperacusis, which is an extreme sensitivity to sound.

Tinnitus and Hyperacusis are the worst maladies I’ve ever had to deal with. Compromising my hearing, which is my primary sense, was a deep psychological blow. There is no cure for these chronic conditions. The treatment options are limited, expensive, huge commitments of time (2 years+), and results are mixed. Habituation is the only ultimate goal. I will most likely live with this condition for the rest of my life – and it can get progressively 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.

I added a lot of new mechanisms of support in my life. For the first time in my life, I really asked for help from family and friends, and they stepped up. My wife was my anchor while I weathered the storm. She was extraordinarily patient, caring, consoling, and supportive. I started up with a cognitive behavior therapist, joined a couple support groups, and leaned hard on anyone who offered support.

My life became markedly different than from my life before tinnitus. There is no way to continue living the way I was – there are a lot of compromises, sacrifices, and behavioral changes. I have to avoid places and events that are loud. Going to rock concerts, a favorite former activity, is a thing of my past. Critical listening, the skill set I’ve developed and honed for the past 20 years, is frustrating and occasionally painful. During that first year, the few times I tried to work on my own music ended in tears. I was unable to engage in things that I was most passionate about.

I had never experienced this level of mental suffering before, and my knees were no better off. It took a couple years before I could really accept that Tinnitus is going to be part of my life going forward. I took my first sustained break from my music projects, lasting almost two years.

I was keenly aware that things could be much worse. I still had so much to be grateful for. Yet, my daily reality, was really challenging. I did not have the option to stop being a father, husband, or provider for my family. The future was intimidating and scary, but I was old enough to know that how I felt then now does not represent how I will always feel.

Even though tinnitus is a fairly isolating affliction, I did not face it alone.

I had faith that I would emerge stronger from facing this. And I did. In more ways than I could imagine.

I couldn’t imagine ever being happy again. However, I would say the past few years I’ve been the happiest I’ve ever been. I still have tinnitus and hyperacusis. That hasn’t changed. What changed was my perspective and engagement with life.

How I turned the corner

September 6, 2015

I’m both proud and relieved to report that I turned a corner in my life. I have trudged through darkness and come out on the other side.

There was almost a year in my life when I didn’t believe that life would get better. My hearing conditions are permanent, the options in my life narrowed, and many ordinary life situations became more challenging. This was the time when 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.

How did I get to a better place? By having an amazing support structure and trying many things. Here is what made a significant impact:

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:

When Laughter Hurts

May 6, 2016

A few years ago, prescription medication damaged my hearing. I now have tinnitus, which is a constant ringing in the ears. 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. These conditions turned my world upside down.

When this first happened, I fell into place of 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. Eventually, I discovered that I am able to still fully participate in my life, just not in the way that I had envisioned. There are now a lot more hurdles than there used to be, along with more sacrifice. I honestly did not have much practice with sacrifice before then.

I still have collapses about my hearing from time to time, but it’s pretty infrequent these days. I get sad about letting go of so much that I once had, angry that its feels unfair, and jealous of everyone around me who gets to do the things that I can’t. 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. However, I know what to do what this happens. I journal a lot. I do some congnital behavioral therapy work. Most importantly, I talk 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. Therapy helped me see that these overwhelming feelings are rooted in my younger self, and then taught me to have compassion and love for that little person. I truly understand what it is that he is feeling. Then I can more clearly access my adult self perspective, and seperate that from the younger self feelings. 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 around me.

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 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 sharp 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.