The Unheard Agony of Tinnitus.
My story of discovering a new world of sound.
I was the one who was always asking people to turn down the volume of music or the one who avoided loud places. I found noise hard to bear and would find solace in the quietude of a walk with my dog. I had loved these strolls in the park with the soft whispers of the wind, the gentle rustling of leaves, and the comforting hush of a tranquil evening. My world of sound was preferred when it was soft and quiet.
One fateful day, my world of silence was shattered forever. A day I will never forget and that is imprinted as trauma in my memory. A persistent ringing crept seemingly, from out of nowhere in my ears. It was abrupt, disturbing and frightening. It came for no real apparent reason. However, my fiancé would later insist that I had complained for months that my ears were ringing every now and then. It had always been temporary however and would go away and I’d think nothing of it. I always forgot about it.
This time was different. The unwelcome visitor kept on ringing and wouldn’t stop. Days would pass and the sound became painfully unbearable. I began to panic. An anxiety welled up inside me of which I had never felt before. How could my brain do this to me and why? I had never been to loud concerts. I had always been protective of my ears, and yet I had this awful sound destroying my world of peace.
The Panic Attack
It was the first time in my life that I experienced a panic attack and it was horrendous. I wanted to run away from myself and yet I couldn’t. My body began to sweat, my hand shook uncontrollably and my heart pounded. I thought I was going to die. In fact, I wanted to die, just so the infernal noise in my head would be gone. Never in my life had I felt this low and it both shocked and frightened me. Was it even possible to feel this dark inside? I suddenly cried like I had never cried before. It turned into a sob and then a wail. How could I live with an eternal scream in my head and stay sane? I truly felt that I was being punished and that God had forsaken me.
My once comforting silence had been replaced by an unrelenting, high-pitched hum. My silent sanctuary had become a cacophony, and the absence of silence began to leave a dark imprint on my soul.
I would later find out that I had a condition called tinnitus. A symptom characterized by the perception of ringing, buzzing, or other sounds in the ears when no external sound source is present. In other words, a sound in my brain that no one could hear but me. A sound that my brain was compensating for because something had suddenly rewired incorrectly.
As the days turned to weeks, I found myself becoming more and more depressed and I no longer wanted to participate in the world. I barely slept and when I did, I’d wake up and hear the sound like a roaring jet engine and fall back into panic. All I could hear was the maddening scream and then only as a secondary sound, the world. My relationship with sound had dramatically changed. The scream was all-encompassing like a kettle on a stove whistling. The only problem was I couldn’t turn it off. Why wouldn’t it just turn off?
The inability to hear silence was a profound loss to me that no one seemed to understand. I was a fixer and whenever something in my life was broken, I made every attempt to fix it. Nothing I did stopped it. I was broken and shattered. There was something deeply wrong inside me and these thoughts, anxiety, and lack of sleep, were taking their toll. I was exhausted. All I wanted was to be normal again.
I had to do something. I just didn’t know what.
The Community of Support
As the months passed, I turned to the medical community which promised little hope. The ENT specialist couldn’t help and told me to just get used to it. My family doctor simply prescribed anti-anxiety meds which ironically could worsen my tinnitus. I had an MRI scan and I secretly wished they would find something. At least if they found something, it would mean I could be fixed. My scan came back fine. I then saw an audiologist who informed me that I had high-frequency hearing loss. I started wearing hearing aids. I’ll never forget the first time I put them on. The world became a symphony of sounds I had never realized before. I had no idea that I was missing so much sound in my world. And yet this happy moment was darkened by the fact that I could still hear the roaring whistle in my head. Nothing truly helped. I wanted it gone.
My world remained dark for six full months and I didn’t know how to find the light.
Eventually, I was sent to another audiologist who specialized in tinnitus and sound therapy. Could this be the light at the end of the tunnel? I was told I should listen to white or pink noise during the day, at a volume just slightly lower than the sound of my tinnitus. The theory was that my brain would eventually realize that the sound of my tinnitus was no longer important. Tinnitus sound therapy is designed to alleviate the symptoms., This form of therapy aims to provide relief by utilizing external sounds to mask or modify the perceived noise, which should help me cope better.
I tried the therapy but felt like this wasn’t the answer, at least not for me. Instead of hearing just a high-pitched whistle, I now heard a whistle and a fuzz. It was maddening. My hope had been shattered. There had to be something else. I frantically searched the internet. Which, for anyone who is first suffering from tinnitus is not something I recommend, unless you focus on positive stories or sources only. The more I read, the more frightened I became. All I could find was that there was no cure and that one would just have to learn to live with it.
Live with it?
Living with this seemed unbearable, or so I believed during my moments of profound despair. Slowly, a glimmer of light pierced through my dark world when I stumbled upon two remarkable support systems. The initial beacon was Treble Health, an organization centered around sound therapy for achieving habituation. While I didn’t feel like this would help me, I came to understand there could be hope through something called habituation. This meant reaching a point where the noise no longer disturbs you, sometimes almost fading into the background—much like the constant hum of a refrigerator that you never consciously notice. I decided I was going to habituate and get on with life.
Secondly, I discovered a Podcast focused on tinnitus hosted by someone who also suffered from it, along with hearing loss. The Podcast was called “Tinnitus Relief Podcast by Outring Tinnitus.’ It was here that I found a group of kindred spirits who understood the ache of missing the silent symphony. Through our shared experiences, and ACT (Acceptance and Commitment Therapy) I learned coping mechanisms and began to feel a renewed sense of hope. Frieder, the host of the Podcast and the creator of the MyTinnitus Club, had become another glimmer of light.
Online I had also connected with another fellow sufferer and together we’d lift each other out of our darkest days. She became an angel for me. No one can understand this condition unless you have it. We navigate our suffering in silence—or rather, within the pervasive sound that echoes loudly in our heads, an unwelcome whistle that persists whether we consent to it or not. It’s a persistent companion that may never fade away. So in some sense, it was true. I’d have to learn to live with it.
While my family couldn’t quite understand what I was going through, they did what they could for me. Just listening to me lament about the constant sound helped me feel that I wasn’t alone in my battle. My fiancé also held my hand through it all. He coached me over and over through my endless nights of tears and self-pity. Through his unwavering support, he helped me pick myself up from the mud and pulled me out. Over and over and as many times as I needed, until I could do it myself.
A New Way of Being.
Slowly, I began to learn a new way of being in the world. I discovered regular sleep once more and I began to appreciate other’s suffering and plights with a deep and heartfelt sense of empathy. The human condition is hard and sooner or later we all experience some kind of suffering. Through this journey without silence, I’ve also learned about the art of adaptation and resilience.
While the persistent buzz remains and I still wish it would go away, I’ve discovered that, even in the absence of pure silence, there exists a harmony within the noise. Eventually through my suffering, I began to appreciate the rhythm of life, the beauty of the world around me, and the resilience of the human spirit to find solace even in the midst of deep despair and discord. One just looks at small things with more gratitude and silence has new meaning for me now. Don’t get me wrong, it’s still a daily challenge. My walks with my dog aren’t quite the same as I now listen to podcasts or audiobooks and focus on learning. Sometimes I even just bring ‘Susie’ the name I call my tinnitus friend along, without any masking. Now there’s light where there was once only despair. I even have days where I feel like I’ve forgotten all about it. Those are the days I cherish. I love life and its small gifts, more than I ever have before. Perhaps that is the great lesson. To appreciate what you do have.
In the end, I hope that I can be a testament to the transformative power of acceptance and the ability of the human soul to discover new melodies, even when the familiar tunes have been altered forever.
Wishing you the utmost healing wherever you are in your spiritual and healing journey.
Stay tuned for part II of this post.