It Gets Better

Hello everyone,

I've been meaning to write a post about my T for a very long time, and I've decided to drop everything and finally do it today. My hope is that my story will help someone struggling with Tinnitus, whether they just started to experience T or have had it for years.

I developed Tinnitus literally out of nowhere in December 2015. I was at a very low point in my life, and I'll never forget the moment it first started. I was sitting in my parents' home on the couch, and suddenly noticed that my mother had ear drops for Tinnitus. And I didn't even know what the word meant, so I looked at the little bottle's packaging and read about it. I remember thinking, ringing in the ears? What could that possibly be like? And how is it my mother has it? Then out of nowhere, the loudest ringing I could image totally overwhelmed my hearing, a loud-pitched, shrill and endless tone. I wasn't sure if I was imagining it at first, and I was in such a low place emotionally, and had started withdrawing from people, that I didn't even want to talk about it, perhaps out of the child-like fear that acknowledging it would make it real. I very much doubt that I even had the capacity to talk about it, even had I wanted to.

The first days and weeks with my T were some of the hardest of my life. I was overwhelmed, to think that I had completely lost control of my own body. I loved and still love silence, and live for music, and I believed those two things were lost to me forever. I couldn't sleep, and felt that - on top of everything I had been dealing with at the time - my life was hopeless. I fell into a very deep and abiding despair. I had a number of nights where I cried myself to sleep, not knowing how I could possibly deal with this condition on top of everything else I had to deal with in my life. This unhappiness was all compounded by the fact that all my online research - and eventual Dr visits - led me to the conclusion that that awful ringing sound would never, ever leave my consciousness, for the rest of my live. I was heart broken to think that in my late twenties I had developed a chronic condition that stole all my joy and sense of purpose in life. I almost felt worse for feeling that bad, for allowing myself to get so low when there were a million other worse, more painful and debilitating conditions that could befall a person, but try as I did I could not get myself to feel grateful. I was already in a low place, and for a variety of reasons thought very long and hard about ending my own life. But I had reached such low points many times in my life, and eventually I picked myself and decided that I had to find a way to live with this.

I tried everything. I tried ear drops - which did occasionally help, but which I resisted using, for fear of becoming dependent on them. I googled endlessly and downloaded music iPhone apps which were meant to help, but I was too listless to even try them out. I tried to force myself not to hear the noise - to focus on everything, anything else, any other sound - but it was forever there. It felt like an endless bloody battle which I was destined to keep reliving, and it always ended with me losing. But my life took a drastic turn for the better, when several months later I saw a message on a forum not unlike this one.

The anonymous person who posted that message will forever have my gratitude. She wrote about how she went through all the cycles that I had gone through. Until finally she realized she couldn't fight her T, and she chose to accept it. Acceptance is one of the hardest things to do, because it's asking the body to stop its frantic fight-or-flight response, to stop reacting to whatever is making us afraid or causing us pain. This lady talked about how, after she stopped fighting it, little by little she grew accustomed to the noise created by her T, until for large periods of time it became very faint and even intermittently disappeared. She shared her story hoping to give other people hope, and to let them know that things really could get better.

I won't tell you that my experience of T changed immediately after reading about this lady's story. But it opened me up to the idea of total, unconditional acceptance, and that set me on an entirely different trajectory. Not long thereafter, a friend of mine told me about a short animation which a classmate of hers at art school had created. The story revolved around a young woman who suddenly started hearing bird song wherever she went. At first she was enchanted by the experience, thinking that it made her special. But later, when she realized no one else heard the birds, she grew sullen and ashamed. Though it didn't correspond exactly to my experience of T, as soon as my friend finished explaining the story, I said to her 'I'm going to try to think of my T as bird song!'. And little by little, whenever I felt really distressed by the ringing - and I will not sugar-coat it, that happened frequently for a long time, and really quite intensely - I tried to imagine that it was the sound of birds singing. And as time went by it really helped me feel better. Soon thereafter, while doing a course on the history of science, medicine and technology, I came across the greek concept of The Music of the Spheres (more on that here https://en.wikipedia.org/wiki/Musica_universalis) - this idea that music and mathematics are deeply intertwined, such that the planets themselves (the spheres) made music - either literally, or metaphorically as they followed their mathematically-determined orbits. And right after reading that, I said to myself 'I'll try to think of my T that way! As this music of the planets which no one else can hear!'. Though that may seem quite fanciful (because of course it is), trying to imaginatively conceive of my T as this source of wonder and pleasure, rather than anguish and despair, helped me a very great deal. Little by little, I became a lot less distressed by it. It took a lot of hard work, to associate this thing that almost ruined - even almost ended - my life with all these good things, but I feel it definitely helped.

As more time passed, I started realizing that the brief intervals during which I stopped hearing the ringing at all - at first only brief, fleeting moments in a day - stretched into hours and hours. And that was when arguably one of the most important mental shifts I experienced was made possible. I had been trying for a while to not think of myself as defined by my diagnosis or how it made me feel, and to still find purpose and joy in my life regardless of it. But as the intervals of silence got longer, I realized that I had to change how I saw my T again. Rather than thinking and feeling that I 'had' T - that is was something with me, always and forever - I started to say that I *experienced* T - which more accurately reflected that it was something that came and went into and out of my consciousness. I know this might sound like splitting hairs, but the linguistic and even emotional distinction is very important here. The difference was that I stopped expecting to hear my T because I 'had' it, but rather *expected* that I could go long periods without experiencing it at all.

In the time since having made all these mental shifts, and having gone through all these very painful but ultimately rewarding thought processes, I've experienced entire days - and sometimes, even an entire week if not longer! - without once hearing my T. I've gotten to the stage where I quite literally forget that I have it. And even when I do hear it - as I do now, typing this - it's become a faint, innocuous presence. I think it is so remarkable that it verges on fiction writing, the idea that this thing which almost totally wrecked my life ended up serving the purpose of teaching me to enhance my capacity for acceptance, and which then walks in and out of my life so uneventfully. But I swear to you this is all that happened, and exactly how it happened.

From the bottom of my heart, I hope that reading this story will help at least one person struggling as I was or even worse, just as the story I read almost a year ago helped me. One of the main take aways from this entire period has been that the meaning we ascribe to the events in our lives will very much determine what we get out of them. I tried my hardest to imbue the experience of struggling - and really, suffering - from my T with meaning, and to use it as a learning and growing experience, and I am beyond grateful that that is what I received from it. I sometimes feel that perhaps I should be grateful for having had this experience - harrowing as it was - because, if at the end of the day I learned so much about acceptance - and not as many have had to, in much harder ways, through bereavements or truly insurmountable tragedy - then I can say that I got the lesson 'at a discount', as it were. And that is something to be grateful for, and to celebrate. I'm going through a very tough time now too, but I try to remind myself that since I was capable of surmounting that obstacle, I must have within me the resilience I need to make it through this.

Wishing you all a great evening, wherever you are. I hope and pray that things get better for you too. It's possible. I promise!

Take care,

Mohammed

 

I realize that if a person's tinnitus sounds like a furious fire alarm going off in the head that they may not be able to do this kind of recharacterization of the sound. But my understanding is that most sufferers have either moderate to mild tinnitus, and so they might benefit from rethinking the sound.

When I found this forum, I remember reading someone here describing his/her tinnitus as insects scratching across a plate of glass. I could relate to that because I had a more muted version of that sound.

But what horrible (if accurate) imagery.

So when my tinnitus got bad at bedtime, I rethought the sound as ice crystals blooming across a snowy landscape. I closed my eyes and could see it, like in an animated movie. It was much less threatening to me.

Tinnitus is such a mind-f*ck.

 

How loud is your T?

 

Right now? I think probably as loud as it was when I just got it. Difference being that in those first days it was practically all I could hear, as loud as or even louder than everything else. But now, as I hear it as I type this, I'd say it's like a 3 out of 10 in terms of volume.

To clarify, I think what's happened is that habituation to it has made me often totally forget about it's existence most of the time, so I only actually experience my T intermittently. Ironically enough I hear it a lot more now that I'm thinking more about it and writing about it, but that's fine. Hearing it just feels like a fact I suppose - like the constant sound of traffic in a busy city - not threatening or distressing, mostly neutral.

 

My T was more like the furious fire alarm you described, a maddeningly loud and shrill shriek. My T did not and does not actually resemble the sounds I tried to re-perceive it as. My hope is that even someone with a very intense T like mine will consider recharacterization as an avenue to explore, to achieve relief and peace.

The distress T causes is largely attributable to the extremely-justified freak out that begins - and continues most-often indefinitely - when so-threatening a stimulus is experienced, and fight-or-flight can't help the situation because there's literally nothing we can do to force the T to stop. My understanding of habituation is that it entails recharacterizing this threatening thing, down from the level of an existential threat - including abandoning the thought that something is deeply wrong with your body and that it's a harbinger of disease/decline/death - to the level of something that 'just is'. Although certainly not on the same level, there is an element to this acceptance not unlike the acceptance associated with healing from grief, in that it is accepting that something has changed forever or been lost, and to stop fighting the pain of that loss while accepting that it will remain a part of one's life for good, because that's when healing can begin. As I wrote in my story, for me it was a very long and painful process, but my hope is that someone will read this and at least try. I never dreamt I would experience silence again, but I've come to learn that it's possible.

I like the image you came up with of ice crystals. Very creative.

 

That's the freakiest thing ever.

Maybe we should all rethink Tinnitus awareness outreach. 'Cause in some cases awareness can cause Tinnitus?

I know that's not the point of your post nor your intention, but it is freaky. Maybe the awareness caused something that was always there to finally assert itself.

I've know that I've had a very low-grade ringing for years, but I never heard it except in the still of the night. I never had trouble sleeping because there was always a fan running on low in the bedroom. But I knew something was there, a seed of something, and I ignored it.

Then finally it came to the foreground and really bothered my sleeping. I finally had Tinnitus, even though I previously had a bit of it that never bothered me.

Maybe something like that happened in your case? Not sure.

 

I'm glad you made this point, because that was something I forgot to mention when I first posted. I distinctly remember having experienced T very briefly once or twice before as an early teen, but it happened so briefly, and I was always in the middle of something - like reading a history book that I was totally engrossed in - that I just tuned it out, and then never noticed it again. It may be the case that my expectation at the time was that this was something that happened to everyone from time to time, like a head rush, so it didn't alarm me - but that when I became aware that it could possibly be a chronic/recurring experience, I actively looked for it and then realized it was always there.

Both my grandmother and mother have/experience T (and I don't know about anyone else in the family, they may as well but perhaps just never talk about it or don't realize it's a 'thing'). I believe it started in my mother's case around her late 40s and in my grandmother in her 70s. So it does make me wonder if there is a hereditary aspect to T onset. I am also very convinced by the research I came across saying emotional wellbeing plays a part in its outset and its continuation. It may very well be the case that when I experienced when I was younger I was in a better place emotionally, so my mind was able to habituate to it very quickly and without much anxiety. So I'd add to what I my post that dealing with anxiety in all it's forms is also a major boon for T relief or even abeyance.

 

Hi Mohammed,

Thank you for your post. It's really inspiring! How are you doing these days?

Kind regards,

Tjeerd