Sitting on the sofa, legs folding in, with my head on a cushion. Watching the usual evening tele, the lulls of the living room were as comfortable as I was, curled up. Everything was, as it always was. Same habits, routines and just a sense of familiarity about the moment.
And then, just like that, it all changed.
As I watched the television programme’s picture move, a gradual increase in volume of the piercing sound that began to tear through my usual hearing of my left ear. I could feel my whole-body tense, as this alien tone, gate-crashed my senses. A wave of fear hurtled through me as my human instinct kicked in and I frantically moved my ear with my hand, rotated my jaw, tried to relieve what I’d hoped was an air-block. I’d experienced slight tinnitus before, but it was only mildly obstructive to my hearing and fleeting. Usually dying down before I’d had a chance to fully recognise it.
But this was different. It wasn’t going away. My chest tightened and gave me a shooting, burning sensation that I’d quickly come to know as anxiety. The mundane only seems so, when that comfort is taken away. And even just a few minutes into this experience, I was longing to rewind to what I knew.
Everyone else around me completely unaware, I took myself off to the bathroom to see whether the sound would change, if in a different environment. I shut the door and crouched on the floor. Pressed my fingers hard against my ears, to hear what was going on inside my head. To my horror, I could now hear three sounds in my left ear and one in my right. All competing for my attention. My breathing became short and I began to panic. This can’t be happening. When is it going to stop?
I called my boyfriend at the time, up to the bathroom. I was sobbing uncontrollably. Fighting to get my words out to try and explain, something that he could not see. I pressed my ear up against his, in sheer desperation, to try and see whether anything in my head could be heard. But it was no good. It was seemingly invisible to the rest of the world.
I spent the rest of that evening stiffened with fear. Eyes widened and continuously analysing the sounds and frequencies that were constant. I stayed awake and the quiet, calm of bedtime, suddenly became loud and ugly. There had been no break from the sound and sleep deprived, it became the only thing I could hear.
That was my first night with tinnitus.
Days and weeks passed and I became more and more unwell. The mental strain seemed to exacerbate the physical symptoms and every doctor, consultant and specialist I saw, concluded with the same ending line, “There is no-known cure for tinnitus. It’s just a case of learning to live with it.”
But I didn’t want to learn to live with it, I just wanted it to go away. In fact, I couldn’t see how I could live with it. That prospect was the scariest of all.
I was exhausted. Exhausted from thinking about the noises, learning their changes, tonal qualities and variations. It was the central point of everything I did. I feared making any of them worse, so I stopped socialising. I walked down busy streets with my fingers in my ears, I drank excessively to try and block everything out. I spent evenings in the freezing cold, because the outdoor sounds and cold air, somehow made me calm.
At 22, my life had changed and it was never going to be the same.
Reluctantly, I packed my bags and moved home. I needed to stop and adjust. I had become quiet, as if I somehow didn’t need to make more noise than I was already experiencing. There didn't seem to be any sense of ‘normality’ anymore and even with family support around me, the invisibility of the sounds meant that I was detached.
It took two years for me to accept that it wasn’t going away. Friends and family gave polite hope that it would one day just fade. But I knew it wouldn’t. It was with me for life.
I spent the rest of that decade, idly battling against something that I had no control over. Unfortunately, at that time, I just couldn’t see that fact. Socially, this meant I was the awkward one. Not really wanting to go to loud places, but not wanting to be left behind. Trying to build new habits, but feeling isolated in doing so. My twenties had become a relentless tug of war between pleasing others and preserving my symptoms as they were. And I was resentful that I had been mentally robbed of what should have been carefree years.
So, what changed?
Well, I became selfish. Self-absorbed, self-centred and downright selfish! No two ways about it, I began to put myself first.
Even this small tweak made me realise, that I’d not just been looking for all the answers to be handed to me on a plate, but also, that I’d been asking all the wrong questions.
I began to make changes. Big changes, and with each one, I felt a sense of identity again. Something, I’d completely lost. Whatever didn’t work positively in my life was removed and I made space for new ideas, ways of being and new opportunities. Not all of this was easy. In fact, there were times when I thought I’d completely lost my mind.
It meant tough decisions.
The ending of relationships, friendships… I changed career, I changed city and I began to forge a new direction for myself. Learning became everything to me. It was something in my control that I was giving to myself. It gave me the breathing space to think and consider other things other than the sounds in my head.
Learning became my therapy.
With knowledge, comes wisdom and so, instead of shunning the medical world, I went back, tail between my legs, to see what else I could do, to help myself, instead of expecting them to simply cure me.
It didn’t take too long before my perspective shifted and with the help of referrals from the healthcare system, I found myself not just developing new coping techniques, but learning more about the world than I ever had. About who we are, our capabilities and how powerful human beings can be.
This opened a whole, new world of possibilities to me. Ones I would have never been in touch with, if I hadn’t developed tinnitus.
Fast forward twenty years from that first night and I'm in a good place. The noises in my head are still there. They never went away and I didn’t have a break from them. But now, I don’t fear them. They’re part of my life and that’s it.
Accepting that I've forgotten the sound of silence has been a challenge, but what that eventuality has brought me in return is an enriched life, where learning is both a pleasure and a sanctuary. A new perspective on people, their challenges and how ultimately we are all just here to experience life in as best a way as possible.
Without tinnitus I was sleepwalking through my life. Now wide awake, I can safely say I'm staying put to live it.
For more information on tinnitus, visit: https://tinnitus.org.uk/
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