HYPERACUSIS CENTRAL

Farewell Letter from Dietrich Hectors

by | Nov 7, 2022 | Awareness, Patient Stories | 3 comments

Farewell letter from Dietrich Hectors

Trigger warning: suicide

Dietrich Hectors, a 29-year-old young man from Essen, retired from life in July 2009 because he suffered unbearably from his tinnitus and hyperacusis. He posted his farewell letter on his
Facebook profile to draw attention to the issue of noise and hearing damage.

June 15, 2009

I feel incredibly bad… It’s hard for me to describe what I feel, hard in the sense of hard to understand. But I am going to try to explain it anyway.

I really don’t feel like living at the moment. I am 29 years old and I should be in the prime of my life. But I have an incurable ailment called tinnitus and hyperacusis, which controls my whole life. Tinnitus means hearing sound that is not there; hyperacusis means hypersensitivity to noise. But the ailment encompasses even more things than these two. The medical aspect will be discussed later; for the moment I am going to limit myself to a description of the symptoms.

I cannot speak at the moment because it hurts my ears. The tapping on the keyboard even hurts my ears a little. I can just about tolerate the hum of the PC. It is obvious that this hyperacusis is torture for your life. Talking is difficult, social contact is limited to a minimum. For a 29-year-old this is very painful. All the “fun” (social) things I do I have to pay with extra pain afterwards or a permanent aggravation of the ailment. This is very taxing, as it is not only physical pain but it is especially heavy on mental health. The physical pain of the ears cannot be compared to other pains. Normally, you can take a pill against it, but with this pain it doesn’t help. You can only let time pass and wait for weeks at rest until it gets a little better. The mental side is even heavier: it makes you despondent and you get scared of getting worse.

Pain is not the only thing; I am burdened with a constant beeping and humming sound that haunts me everywhere. That’s tinnitus. Everyone has the occasional occurrence of coming out of a too-loud party/club, and the ears tingle/beep. It’s terrible. But this is permanent, not temporary. I have adapted my life to it: next to my bed is a PC. With its buzzing, I hardly hear my tinnitus anymore. That way I can still sleep well. As already mentioned, I usually have enough background noise not to realize that it’s there. But the problem is that the background noise cannot get too loud, otherwise I get more pain in my ears again. So I have to be in a certain noise band, between two well-defined levels. The drawback is that these levels are getting closer and closer together, but more on this later.

Third, there is another constant feeling of pressure in my ears. It’s similar to the feeling when you drive uphill-downhill in a car, then you get a kind of pressure in your ears, and you swallow once and it’s gone. But I might swallow a million times and that annoying pressure just won’t go away. Another way to describe it is as if there is water in your ears, constantly pressing on your eardrum. That’s what it feels like. It’s exhausting to worry about that pressure, so I don’t think about it too much and then it’s not too taxing. When I play sports the pressure gets much worse. I want to address how I got my ailment over the years and how I gradually found out everything.

The hyperacusis is terrible, as the ailment eats up an awful lot of energy. Just imagine that every word you say hurts and that you’re sitting with a constant whistling steam boiler in your ears. I have had to change my life drastically since suffering from this ailment. Before, I was a hyper-social person, I wanted constant interaction with people, going out every night to the pub or socializing, sitting together with people. Now I am constantly sitting at home, lonely in silence. I would so love to have children in my life, but I could never handle them because of their noise. This frustrates me immensely.

How did I get this ailment? Well, it didn’t happen overnight, from nothing, to the level that I have now. It happened in stages, worse and worse and worse. To explain it properly we have to go back in time a good 15 years….

1993

I’m 14 and I don’t know quite how to adapt well through puberty. I had never really listened to music much, until I discovered Nirvana and Smells Like Teen Spirit. In those, I found what I was looking for.
A whole new world opened up for me. I discovered the radio station Studio Brussels, and along with it many other hard rock bands: Smashing Pumpkins, Therapy, Metallica, Helmet, Soundgarden, DEUS, Clawfinger, Silverchair, Green Day, Offspring…, but Nirvana remains in the lead. I totally love my discovery of the hard rock genre. The death of Kurt Cobain grips me, and only motivates me harder to listen to the genre. I become passionate about music. It becomes my biggest hobby and all my money goes to it.

1995

I had never thought about making my own music until a friend suddenly came up with the idea of starting a band together. I hesitated at first, but I was jealous of him when I saw him playing his brand-new electric guitar. Because I didn’t have enough money for an electric guitar, I bought myself a 3000 franc folk guitar at the end of August 1995. The thing probably didn’t sound right, but when I started playing it, I loved it. I learned simple grips through some books, and further on myself some songs by Nirvana. However, my playing of the guitar remained very amateurish, and if I could play a few notes in a row I was already satisfied. Gradually, my playing got better, but I did not set my standards too high.

In the meantime, as a strong teenager, I began to scour the parties and pubs in the neighborhood with friends. I loved headbanging to solid rock music, wearing my T-shirt of Nirvana or Therapy. It probably would have looked ridiculous, but so what, I felt cool anyway. It was during that time that I had my first contact with T (T for tinnitus and H for hyperacusis). It showed up sometime on a Saturday-Sunday night in April 1996 with my friend Geoffrey outside a party at the Rex. That’s a party hall fairly close to our home. We’re walking home and he says to me, “Oh my, my ears are ringing!” I also admit it, my ears too are ringing tremendously loudly. The party had just been too loud. The next morning, however, I woke up without whistling ears. Geoffrey and I used to go out together, usually with no ringing ears as a result. But it sometimes happened, and in the morning, our ears would never bother us again, so who cares. It was small compared with what awaited me a few months later…

Gradually my music genre shifted. I had been playing Nirvana a little too much, and the other hard rock bands couldn’t give me as much satisfaction as Kurt Cobain’s work did. So I started listening to harder music to get satisfaction from my music; metal became my new favorite genre. I started listening to bands like Biohazard, Pantera, Metallica, Sepultura, Machine Head, Fear Factory…. The day I’m typing this (June 15, 2009) I still lament and regret that switch, and why will become clear in a moment.

November 20, 1996

Concert of Sepultura in the Brabanthal in Leuven, Floodgate and Strife as supporting act. Since listening to metal had become one of my greatest hobbies, I was eagerly looking forward to this performance of one of my favorite bands. I went there with fellow metal fans: a friend and two girlfriends. The problem was that it was on a Wednesday, so I had to go back to school. My father was kind enough to take us, and meanwhile go for a drink in Leuven, and pick us up afterwards.

Before the performances started, I walked around the hall. I see people everywhere with t-shirts showing bands I like. I feel at home. I see people with ear plugs in and laugh at them internally. “Don’t put in earplugs before a concert,” I think to myself, and I think I’m oh so cool. I think I’m oh so tough.

It is 8 p.m., Strife begins to play. From the first note, I can hear that something is not right. The music is just way too loud, I can feel the guitars and drums thudding in my ears. Something that loud I have never experienced before. I look around a bit but no one looks back. Everyone seems to think the volume is normal; no one looks up. The music is terribly loud but I just don’t leave. I am too stubborn to leave. I must and will see one of my favorite bands, I thought. I tell myself I am just imagining that loudness. And if it’s that loud, it would certainly not cause any lasting damage. Also, the other bands, Floodgate and Sepultura, play equally loud. When they put in a song, I didn’t recognize it until about two minutes later because it was so loud. Around midnight the gig is over, we leave the hall. My ears rang louder than ever before. Everyone experiences that; their ears are ringing after a party or performance. But my ears had never been this loud. We find my father and we drive home. I’m not worried yet. After all, I saw a great band.

The next day I wake up. The ringing in my ears is less, but not yet gone. I feel very bad and I decide not to go to school. I want to go to breakfast; my mother is already clearing the table. Every time she touches something else with cutlery or plates, it hurts with terrible pain to my ears. I don’t know what is happening to me. As I write this I know that this was my first real contact with hyperacusis. My mother calls the family doctor and tells him my symptoms. According to him, I had noise trauma caused by exposure to too much noise. After a few weeks, my ears should be back to normal, and I would have no permanent injury. That reassured me. I flip open the newspaper, and it contains a report from Sepultura. “Sepultura played well, but the crowd was rather tame. Not difficult when the music is so loud. Jumping through the wall of sound is still not evident. The music was just way too loud!” So said Het Nieuwsblad on November 21, 1996.

In the afternoon I decide to go to school. The squeaking is already a little less but I am still sensitive to sounds. I meet some friends on the courtyard and start talking to them. Every time they say something or laugh the sound cuts me to the bone. It’s just a lot of pain. I am scared and I don’t know what is happening to me. I lock myself inside that day, say nothing and try to shield myself from sound. When I put on some music at home, my ears start immediately ringing louder when listening to it, so I decide not to listen to too much music. A few days later, the ringing in my ears subsided a bit again and we had history class at school. The teacher shows us a movie. But the sound of the movie is way too loud for me. Fortunately, I had yellow ear plugs with me and put them in; that was my only way to protect myself from the sounds.

Gradually the ringing in my ears lessened, but I still had a slight persistent ringing. So the family doctor was wrong: the sound trauma had left me with something new. I had indeed been left with something. I only heard this squeaking when it was very quiet, when I was in bed. In complete silence I heard a soft squeak. Day by day I feel better and the sensitivity disappears. After a good month I went back to parties, where I endured the noise level without any problems. The sensitivity had apparently gone away. A few months later, another favorite band of mine, Machine Head, was playing at the AB in Brussels. This time I decide to be careful. I really don’t want to experience that earache a second time! I take standard yellow ear plugs with me. Because I am embarrassed to put them in, I put a hat over my ears. When Machine Head starts playing, it’s completely different. The music is not at all as loud. After a while I take off my ear plugs, to test how it goes without them. It goes okay, without problems. After a great performance, I come out without an earache. The next day I have no trouble, and I think of myself as having been smart. No, no, that ear damage would never happen to me again.

———————————

Six months later, I graduate from high school. I have to choose a field of study and I choose industrial engineering at the industrial college GroepT in Leuven. I am 17 years old and take my first tentative steps towards adulthood. I go to the Thomas Morus residence in Heverlee. Both in digs and at school, I quickly get to know nice people. I obediently always go to class during the first semester, because I don’t know how advanced the course content is, and I don’t want to waste my parents’ heavily spent money needlessly. Still, I have enough time to go out a bit with friends. We regularly go to our favorite hangout, the Wierdo’s. It is a narrow and long bar with sturdy stalls. I had regularly gone out there without problems until one night. The music is way too loud for me. I ask my friends if the music is too loud. They say they have no problem with it. Wisely, I decide to go to my dorm, away from the infernal noise.

Combined with the very slight ringing in my ears, which I only hear when it is dead quiet, I wonder if there is something seriously wrong with my ears. I make an appointment with a nose, throat and ear specialist at Sacred Heart Hospital in Leuven. She checks my ears, and they are perfectly fine according to her, so I shouldn’t worry. My hearing is normal, the pressure in my ears is normal, all possible tests on my ears are normal. The ringing in my ears I imagine, according to her. The designation hyperacusis or tinnitus does not come up. So according to her it was an imaginary ailment, but I knew better. When I went out I always took earplugs with me as a precaution, and I had to put them in occasionally at parties that were too loud. I told myself that this noise trauma would never happen to me again.

At digs, we once had a conversation about the ailment. A friend of mine told me that a friend of hers had been to a Metallica concert that was too loud. It left him with a permanent loud ringing in his ears, and nothing could be done about it. That boy went to a psychiatrist to learn to live with the ringing in his ears. I mentioned that I also had a similar sound in my ears, only not as loud. Then I decided for myself that it would never happen to me again; I didn’t want to incur any new noise traumas… I would always take ear plugs to parties, gigs etc….

The following years are great. Student time is great. I have a great time going out. I skim parties, cafes and various places with friends. I go to classes occasionally to regularly, and am always doing well through to the end of the year. My ears don’t bother me very much, only once in a while I have to put in earplugs at a party that is too loud. When I go out, I always have my earplugs with me. In 1998 the Internet world opened up for me and I started to download mp3s a lot. Listening to music shifts from CDs to mp3s. During this time, I also discover the earlier CDs by Metallica: “…. And Justice for All” and “Master of Puppets”. I become obsessed with Metallica’s work, and see them in 1999 at Rock Werchter. I am fairly far from the front. Although the music is quite loud, it does not hurt my ears. I don’t need the ear plugs that are in my pocket. Afterwards I am not bothered either. The following year I go to Rock Werchter again without any problems, an indication that my hyperacusis had clearly diminished after all.

I remain possessed musically. Inspired by Metallica, and convinced by a friend who also played guitar, I buy myself an electric guitar in December 1999 at age 20. I pay for them with the money I had earned during my vacation work. I buy myself a used Gibson, The Paul II. From then on, I begin to focus passionately on playing music. For years I had played my acoustic guitar somewhat amateurishly, but from then on I really wanted to become a good guitarist. I practice 2-3 hours a day and make rapid progress.

A few months later, I’m doing pretty well, having a great time playing guitar (combined with singing). I have finally found the passion of my life. I decide I would like to try playing in a band. I post an announcement in a music store in Leuven: “Guitarist (and singer) seeks band. Genre: hard rock-metal, something between Nirvana and Metallica.” Less than a week later, someone contacts me. He turns out to be guitarist of the band Astronomy from Herent, and they cover Metallica and they are still looking for a singer/guitarist. The band consisted of Tom (16 years old, guitar), Steve (16 years old, drums) and Yann (19 years old, bass guitar). We meet for an audition. At the audition it turns out that the three are great musicians, technically super good. I’m a level below them in my opinion, but they think my audition is super. They have finally found someone who can sing reasonably as well as play guitar. I’ve never thought my singing was great, but I know I can hold some tune. I’ve been hired as a singer/guitarist. Over the next few months we rehearse regularly. I am having a great time playing music together. We don’t play quietly, but my ears never squeak after a rehearsal, and I never had an earache after or the days after. Playing guitar and singing by yourself is fun. But when you can do that together with other musicians, and you hear that it sounds good, that’s another dimension higher. The highlight comes in August: we play at Marktrock in Leuven on August 13, 2000. It’s only a small stage — we play for a few hundred people, but we don’t care. We play some covers of Moby, Pennywise, Metallica and Radiohead. I can hear it sounds good and the audience responds enthusiastically. This really can’t be compared to anything else. I’ve always called it “musically ready.” We play well and get nothing but nice reactions from the audience. I had performed before, but this was still a dimension higher. That moment was a high point, but unfortunately also a turning point. Due to time problems, we were no longer able to rehearse regularly. Steve and Tom were still in high school, and could only rehearse on weekends. I was only in Leuven during the week and in Essen on the weekend, so we couldn’t find any common time off at the beginning of 2001. At that time I was sorry but it was not a disaster. I already had little time, and I thought I had already found love. After all, with An, my best childhood friend, I had recently started a relationship. At times a person is foolish enough to give up everything for “love” without any problems.

September 24, 2001

In June 2001, I graduated as an Industrial Engineer, and because it was a little too easy for me, I decided to go on for Civil Engineering in two years. To be admitted to that, at the time, you had to pass an entrance exam. You were sent a stack of courses of four subjects from the 3rd year of Civil Engineering, which you had to study and take exams from.

I had changed rooms because I was tired of the old one after four years. It had been great there, but in my opinion it could only get worse there. I was ready for a new challenge. But at the new dorm I turned out to be sitting next to a noisemaker. He wouldn’t turn down his music while I studied. So I was forced to study with ear plugs. Sometimes he made so much noise that ear plugs were not enough. I put ear plugs in my ears, and ear muffs around them. That was the only way it was quiet enough. I studied for a month for my exams, took them in one week and passed. During those days, the 9/11 Twin Towers attacks happened, but I was so busy with the exams that I didn’t know about them. However, my personal towers had yet to collapse. An didn’t see things between us anymore. That was a big blow for me, because I was still very much in love with her. Then I collapsed emotionally. I had seen it coming somewhat, but had hoped it wouldn’t happen, or I was too blind to see that it would. The worst thing was that we had planned another trip for two right after that. I didn’t feel much like going on a trip for two, but because I felt I deserved a trip after studying for so long, I decided to just go on the trip.

So Thursday was done, and on Monday we left on a trip to Italy. We flew from Charleroi to Pisa on Monday, Sept. 17. Over there we went to the Cinque Terre region, a beautiful coastal area. We did excursions, hikes, kayaking, biking and a lot more. The trip in itself was still pretty fun for the circumstances, but I felt emotionally devastated. For months I had been looking forward to a great trip, but due to circumstances it was obviously less than I hoped for. I wish I had never done that trip. Not for the trip itself, but because of something that happened on the way home on Sept. 24. On the way home, I got into a bit of an argument with An over just a minor thing, but the mood was ruined anyway. I felt really bad, and was really emotionally all tangled up. “No worries,” I thought. “Soon the plane will land in Charleroi, and we’ll each go our separate ways.” Then the plane descended from the skies to Charleroi, but it descended tremendously fast. I had terrible pain in my ears. I looked around me on the plane, and many on the plane were reaching for their ears. Almost everyone seemed to have pain in their ears. I also asked An, and she too appeared to be in pain. Once the plane was on the ground the pain disappeared, and with that I also thought the misery was over.

The following days the lessons of civil engineering began. But I felt bad psychologically and physically. Psychologically because I was nowhere near over An, and physically I felt pain in my ears. The professors in the classes seemed to be talking too loud, and it sounded so dull in my ears. My ears felt like I had suffered another sound trauma. I started to get scared; I didn’t know where the pain was coming from. Then I began to think about it. I hadn’t been at a party that was too loud, had I? I had always protected my ears, hadn’t I? It occurred to me that it could be from flying. Too much noise can cause sound trauma. Sound is actually pressure pulses, a plane sinking also causes pressure in the ears. Then the connection was quickly made. I had suffered noise trauma from the return flight! I did not know at all that that was even possible, and I did not know at all why I had contracted it now; after all, I had flown years before without any problems (including a trip to China). I asked myself many questions. Why did this noise trauma have to happen to me now? Was it because I already had slightly damaged ears that I contracted this again? Was it because the plane was sinking way too fast? Was it because I was emotionally in knots that it came out physically? Was it because I had studied for weeks with ear plugs in and ear muffs over them and that I could no longer stand that high stress on my ears? I didn’t know, the questions troubled me. I suspect the answer was a combination of the various possibilities. I felt very bad; I had tried so hard all the previous years not to suffer further noise traumas, and now this was happening…. I was so scared that I decided never to fly again; this would not happen to me again.

Slowly I recovered from the sound trauma: after a few weeks all sounds hurt my ears less, but I found that I had suffered permanent damage again. Fortunately, there were the wonderful Kotstones, which I amused myself very hard at. That way I could repress my sadness for An. Several times at parties and cafes I had to put in my ear plugs, much more than before. In November 2001, the exhibition match was between the rising tennis talents Clijsters and Henin. I followed the match at home in Essen in front of the TV. Other than the racket strokes, it was mouse quiet during tennis play. But I noticed that in my ears it was not mouse quiet… there was a ringing in my ears, louder than the ringing I had had since 1996. And that was months after that fatal escape for my ears! I had apparently once again sustained permanent damage to my ears! I got scared, and once again resolved that I would do everything in my power to prevent further ear damage in my life. I would always bring ear plugs, and when it was too loud I would always put them in!

The year 2002 was super fun. I was having a great time in the last years of my college days. I spent all my time going out, playing guitar, singing, playing sports and hanging out socially. These were my passions. Also the occasional little bit of studying if I had to. I already had a fair amount of experience studying, and knew perfectly what I could afford. I didn’t have to take many classes to get through. After months of partying and going out, I flipped the switch shortly before exams from party nerd to monk. I had to catch up on my missed classes, so I stayed in to study for whole days at a stretch, almost without going out. That way I could get through without too much trouble.

The year 2003 would definitely change my life. For the first time I was tormented daily by tinnitus and hyperacusis, and lapsed into depression. Sporadically, I had kept some contact with drummer Steve. In February 2003, he asked me to come back and play with them. Since he and Tom were now no longer in high school, it was no longer a problem to rehearse during the week. I did another audition for several hours, and it was once again awesome. It clicked well again, and our musical interplay sounded good again. I became the singer/guitarist of a band again. But my ears had obviously become more sensitive since the plane incident. Every rehearsal I played with my yellow earplugs in all the time. For months we rehearsed one night every week for 4 hours at a stretch. Because as a student I could not afford a car, bassist Benno always came to pick me up at my dorm in Heverlee for the rehearsal 10 km away in Herent.

On a Wednesday in April 2003, however, after we arrived in Herent, I noticed that I had forgotten my yellow ear plugs in the rush to rehearse quickly. “No worries,” I thought. “One rehearsal without ear plugs would be okay.” Every day since that day, I curse myself for not forcing myself to go get my ear plugs first. We played loud that day. Tom turned his guitar amp up loud, and to hear my guitar playing I had to turn my amp up a little louder too. After a while, Steve’s mother came to say that we were playing really loud anyway. I didn’t budge, showing weakness is not an option in the metal world. Besides, I didn’t want to bother Benno to drive back to Leuven especially for me. Silly me! When we drove back to Leuven after the rehearsal anyway, my ears were buzzing and they were ringing loudly.

The following months I was first confronted with the high sensitivity of my ears, and the slow recovery of the ears in terms of sensitivity to noise. The first time in my life I had to cancel appointments with friends because it was too painful for the ears. Not only going out or going to the pub was painful, but even just going out for something to eat together or playing sports. My ears had to rest. Fortunately, I still had a thesis to finish, which was in disastrous shape at the time. Before that, I had resolved to do nothing more for school than just get through it. For the thesis, I planned to do the same. But since the ear problems, my social life suddenly fell silent, and in the thesis I looked for a way to vent my frustration in a positive way. That way, the thesis still had a happy ending, and I had vented my frustration in a healthy way. I also visited the Laperre hearing center in Leuven. I made an appointment with the audiologist there. He was the first to tell me that I indeed had to watch out for my ears. That I should stay out of noise, and if I went into it, that I should wear ear plugs. The classic yellow ear plugs were good enough, they stop most of the noise, and you are safe with those. He also measured the strength of my tinnitus, and my pain threshold. If I am not mistaken, they were 50 and 90 dB respectively at that time.

My ears recovered well over the following months. I did suffer permanent damage, but the sensitivity and pain threshold went down to an acceptable level. Sleeping very short for a week to finish the thesis gave me a different reaction afterwards. I got sick for a week. Since I still had to catch up on some missed classes, it was impossible for me to pass all the exams. So I made the rational decision to postpone two exams to a second chance sitting and to study hard enough to pass the other five. I gave up during this exam period. It was also during this time that Metallica – still by far my favorite band – released a new CD, St. Anger. I bought the CD but was immediately disappointed. The power and aggression were back, but you couldn’t hear the melodic, good-sounding music from before on the CD. Meanwhile, Metallica began touring. Between studying, I followed it on the Internet. I looked at the setlists Metallica played. It was incredible. They played almost all their good, old songs from the past. They were coming to Rock Werchter in early July, but I didn’t have tickets. I surfed eBay and there were tickets for sale on a Saturday, the day Metallica was coming. For a moment I wondered if I would do it, if that wouldn’t be too loud for my ears. “But no,” I thought to myself. “That guy at the hearing center said that with my yellow ear plugs I’m well protected.” And I had been to Rock Werchter a few times without any problems, even without ear plugs. I end up buying tickets through eBay and paying way too much for them: 113€ while an original ticket cost 50€. But I didn’t care, I could go see my heroes, who played all my favorite songs live.

The day had arrived, I finally went to see the reborn Metallica. I thought I deserved this after my tough exam series. I left for the meadow at Werchter, making sure I had my yellow ear plugs because I didn’t want to go through the same thing as a few months before. At the meadow, I had agreed to meet up with Steve and Benno, my former band members. We stayed away from the performances all day, and only went to see them once The Queens of the Stone Age performed. Then it was Arno’s turn. We wanted to set ourselves up well, we wanted to see our heroes up close. We were not quite at the front, certainly not closer than where I had stood without problems several years before. I had my yellow ear plugs in cleanly, as deep in my ear canals as the man from the hearing center had advised me. I was safe, I thought. Metallica’s performance was all orgasm. They played their best songs, roared again like 10-15 years before, and the gig was over in no time. Because of the ear plugs, I didn’t understand the songs very well, though. After all, yellow ear plugs distort the sound. I usually didn’t realize what song they were playing until a minute later. But that didn’t spoil the fun, I was having a great time. My heroes were back and wow! I had seen them live! I took the bus home with Steve and Benno. I didn’t hear an extra beep in my ears. I thought it went good.

I wake up the next day with no extra sound in my ears. All good, you’d think. In the evening we have a family party and coincidentally an uncle of mine puts on Metallica quietly. The next morning I wake up. My room is quiet as a mouse but my ears are not. I listen to the beeps in my ears, which have been strong for months. They are still the same. Not softer, but not louder either. What is new, however, is that I have a humming sound with it. It wasn’t there before! I come downstairs, see my mom, dad, brother and sister. Every word they say hurts beyond belief, every sound cuts through the marrow. A new noise trauma is my part, even though I had protected my ears with yellow ear plugs! In retrospect, the extra hum is easy to explain: the yellow ear plugs protected my ears from the high frequencies. But the bass just vibrated along the ground through my body toward my ears, damaging them. Very slowly and laboriously I recovered from this sound trauma. My ears and my life would never be the same again. The annoying thing was not this hum in itself, but rather the fact that its frequency was in the human speech range. Since then I have been sensitive to voices, especially my own. After all, everything can be muffled with ear plugs except my own voice.

All sound began to hurt my ears. Everywhere I went, sound hurt. My friends did not understand me because there was nothing externally about me that looked odd. Throughout my life I was usually cheerful, happy and full of energy. Almost always positive and optimistic. I was almost never bored; I could always keep myself busy on my own. From this moment on, things would change. Because of the tinnitus and hyperacusis, I became a passive, lifeless and negative person. I didn’t always find the energy to recharge myself. From this I sank into depression, without knowing it at the time. I graduated in the summer as a Civil Engineer, in lesser economic times. It was not so easy to find work. The few places I was able to start working were in manufacturing environments, so this was not possible for my ears. I started getting more and more scared to do things. Almost everything hurt my ears. For months I sat lifelessly at home, not daring to go outside. Friends, I heard less and less and less from. The feeling of people slipping away from you is terrible. I can understand them not understanding me, because externally there was nothing odd looking. However, the unfailing support of my parents kept me going. I really have to thank them immensely for this.

I wondered, why did this have to happen to me? I had been in noise without ear protection twice in my life, TWO times! There are so many people who get into noise so much more often, and don’t catch anything. From those two times, I had suffered so much permanent damage. In 2003, I learned that there are other people in my family who have a similar ailment, albeit much less pronounced. My grandfather, a niece and an aunt also have a mild form of hyperacusis. Apparently the sensitivity is hereditary, and I’ve just been unlucky. This combined with my adoration of metal, and my stupidity in not moving away from too loud noises those two times, brought me to where I was in 2003, a deep depression.

Resurgence- 2004

Thanks to Dr. De Ridder at the University Hospital in Antwerp, I had a resurgence. He was the first doctor who understood me, and for the first time I felt comfortable with a doctor with my ear ailment. He explained tinnitus and hyperacusis to me for the first time. At the back of your ear are very many cilia. These convert the pressure pulse (which is sound) into an electrical signal through the nerves to your brain. When there is a certain sound at a certain frequency, the vibrating hair associated with that frequency vibrates. This is transmitted to your brain. This is how you hear. However, these cilia can vibrate to pieces if the sound is too loud. Then they break off, and it seems to your brain that the vibrating hair is constantly vibrating. So you hear a constant sound that isn’t actually there. This is tinnitus. Everyone experiences this from time to time, if you’ve been to a party that’s too loud. Then you come out at night, and you have whistling ears. The following morning, however, they are usually restored. But if the sound was too loud, they don’t recover. You are stuck with that permanent sound for the rest of your life. The sensitivity to noise can be explained by the fact that your brain senses that something is wrong: it hears a constant sound from the vibrating hair that is broken. Instinctively, your brain thinks, “Something is wrong.” In response, they start listening harder to that frequency, and so all the sound is amplified in your brain. A kind of hyperactivity of your auditory cortex. Tinnitus/hyperacusis is basically a miscommunication between your ears and your brain.

Finally I had received an acceptable explanation for my ailment, even though it was way overdue. He was the first doctor to categorically warn me to stay out of noise. But the harm had already been done. He prescribed me the medication Rivotril and Deanxit. These are respectively an antidepressant and an antiepileptic, but the cocktail works well for tinnitus and hyperacusis, as it suppresses the brain’s hyperactivity. You don’t get rid of your ringing and sensitivity to noise, but it takes the edge off. I took the medication, and my life became a little more bearable. Gradually I dared to go outside and do things again.

At the hearing center in Laperre, I had my ear plugs custom-made. They injected a liquid into my ears, which coagulated to form the shape of my ear canals. Afterwards, a hole was made in this, and a filter of 30 dB was inserted in it. Thus, I had earplugs that made the ambient noise quieter, without distorting it. These earplugs really helped me a lot.

A few months later, I ended the rotten year “depressed at home” by being able to start a doctorate at ELECTA, at K.U. Leuven. I never wanted to do a doctorate per se, but circumstances made it happen. I was very afraid to go to work, for fear of noise. But I had to try something. I rented myself a quiet studio and started working at ELECTA. The noise level turned out to be not so bad. I sat at a desk with two quiet people. Gradually, my terror of sounds began to subside, the stress in my head lessened, and my sensitivity to noise lessened. I got to know cool people at ELECTA and they asked me out to a bar. I was afraid, but wanted to try it. For the first time in a year and a half I went to a quiet café with some friends. It worked, with earplugs in, of course. I hadn’t tried the cinema for years because I was afraid. With earplugs I managed. Gradually my self-confidence grew and I dared more things, always without problems. Even flying was possible with specially adapted ear plugs. I could even go back to bars with louder music. Even though I had ear plugs in, I felt it the next day. But only one day of earache is not so bad. Thanks to the Rivotril and Deanxit, my life became bearable again. I could do a little socializing again, speaking no longer hurt, and I had fun in life again. I could even stay at weddings at the dance party with ear plugs in. I could sing a few songs in a row again without an earache. I felt better. This was truly a revival for me. Performances, however, I continued to avoid like the plague. From late 2004 to 2006, I had relatively few ear problems, at least a lot less than in 2003. Occasionally I would have a relapse due to a slightly too loud activity, but due to the quietness of the community center where I lived in Heverlee and the quietness at work, it was no problem to slowly recover from that. In March 2006, I met the love of my life, Sharon, by chance on an internet forum. We chatted and clicked immediately. A few days after getting to know each other we met to see if we would get along in real life. And from the first moment we saw each other, it was right. I fell in love with her immediately. She was so cool, so sweet, so beautiful, so likable, and it was great. We were a couple almost immediately. I told her about my ears, but not as dramatically as before, because after all, things were a lot better with me.

Setback – July 2006

In the summer of 2006, after a few months of our relationship, Sharon asked if I wanted to meet her friends. We were going to the Tielt Festivals. I asked no questions because I was curious to get to know her friends and I went along. However, there turned out to be performances there. No worries I thought, I’ll keep myself very far from the performances, and I put in my heaviest ear plugs. We had a nice evening, I took great care to stay away from too much noise. We were getting ready to go home, and far from the music I took out my ear plugs. Then suddenly it happened. Near where we were standing people started setting off fireworks. By the time I had my ear plugs in, a few bangs had already happened.

The next morning I woke up without an earache. I thought nothing was wrong. Gradually during the day, however, my ears hurt more and more. The next day they felt terribly painful, all sounds hurt. I was angry at Sharon for taking me to the Tielt Festivals, but of course it was my own fault for going to another gig. Now still I think the damage sustained was from the fireworks, and not from the performances. After months of ear pain, the ears gradually got better. I had to keep very quiet, having to keep silent for a long time because my voice hurt my ears, being antisocial at work, not agreeing to anything outside of work. My salvation was the internet. Through forums and chatting I could still be social in a quiet way. A few months after Tielt, it turned out that I had sustained permanent ear damage there. My ear pain was back to its former level. The pain and squeak you still feel three months after too loud of an activity is permanent.

Once again, my life became more limited. Many things again proved too loud. And then when I went out to do something social or fun, I usually had to pay for it with months of ear pain. These rehabs became harder and harder. Shrouding yourself in silence again and again for months on end eats away at you, especially if you are socially inclined. Telling friends for the umpteenth time that you cannot come because you have earaches… locking yourself in your room for months on end and ignoring all social suggestions… This is what my days looked like during periods recovering from noise trauma: getting up, going to work, seeing people at work, nodding goodbye because speaking hurt, working all morning in silence, going out to eat alone in the afternoon, turning down all requests for conversations, working, surfing the internet a little, going out to eat alone in the evening, and going back to work until night.

I had trouble relaxing. I could no longer pursue my greatest hobbies. Playing guitar and/or singing was not doable. Listening to music was no longer possible. Going to bars or parties was out of the question. Talking to people was not an option. Another passion of mine was sports. But I struggled with a bizarre pain in my shins, which I could not get rid of. I tried everything: resting, kiné, exercises, gait analysis, bone scan, ultrasound, orthotics made in a static way, orthotics made in a dynamic way, osteopathy, adjusting nutrition… nothing helped! I tried for years, but I could no longer play sports. Sports kept hurting. Thus, I couldn’t do any of my hobbies anymore. I tried to relax in other ways: reading and surfing the internet, but I felt constantly frustrated.

Three things dragged me through this. There was the incredible support from my parents. Relentlessly they always supported me, and I thank them so much for that! Second, there was Sharon, who was tremendously understanding. She studied in Ghent, while I worked in Leuven. Very regularly she chatted with me, she encouraged me to rest, and made me feel that I was not alone. Thank you for everything, Sharon! I think she often felt powerless, but she really dragged me through this period. Third, there was my doctorate. I was incredibly frustrated with the ears, and turned this negative energy into positive energy by working on my doctorate for godlike days. It was silent research work, so no problem for my ears. At ELECTA, there were not many meetings, so I did not have to speak and could rest my ears. The result of my hard work could be seen. The people at the company for which I was doing my doctoral work were extremely satisfied, impressed even. Still something positive about the ears, then.

In mid-2008, I started looking out for work after my doctorate. I finally found work at OCAS in Zelzate, a reputable research center of ArcelorMittal and the Flemish government. I was able to start working here in February 2009. I thought I was safe in research, that my ears could handle it. For this, however, I had to move to Ghent. But not to worry, my girlfriend was in Ghent, and a social person like me would quickly make friends. Living with Sharon was not an option, because she still had a dorm until the summer. From a social and financial point of view, and because I had had good experiences with it in Leuven, I looked for a community house for myself for six months. Scared that I wouldn’t find anything decent, however, I chose a particular community house too quickly. I was impressed by the garden at first, but didn’t see how bad and dirty the house was.

The transition to Ghent was tough for me at first. I found myself in a company with all unknown people, in a city I didn’t know, and a house I never really felt comfortable in. I also immediately felt that the workload in such a company was a lot higher than at the university. But no complaints about this, after all, this is what I was looking for. Before I went to Ghent I had my reservations about the move. Would I be able to settle down in Ghent? Would people come to visit me? Several friends reassured me as, after all, Ghent was not that far and they would all come to visit. I never saw anyone there due to circumstances. I felt abandoned.

Deathblow – March 2009

Then there was a friend’s bachelor party. I didn’t feel like going at first, but Sharon urged me to go because I wasn’t feeling so good about myself, which was true. (I don’t want to say anything bad about Sharon by this at all.) I went and it was a great day. Lots of laughter and entertainment. After a while, however, I began to feel my ears. But at that point I couldn’t resist, “I don’t want to leave here, I want to keep having fun!” I remained at dinner, during which I had my ear plugs in, and very briefly in a karaoke bar. There I noticed that the music was too loud and wisely decided to go home. However, I had left too late. Once again, I had sustained permanent damage. This first became apparent two months later, when Sharon and I had invited a friend of hers to the community center in Wondelgem. Just an evening of quiet chatting with friends hurt my ears a lot. All sounds again hurt my ears. I began to lose my faith in life, and told Sharon that I couldn’t take it anymore if things continued like this. Of course she burst into tears and I didn’t want to hurt her, but my life really couldn’t go on with that much ear pain. However, the situation was not the same as before. In Ghent I was in not such a quiet community center, and it was also noisier at work. I went to the doctor and he prescribed a week off for sickness. After that, work went reasonably well and I rested properly, antisocially again. I was ignoring people, being antisocial, eating alone, working, surfing the internet a bit. I was moderately frustrated. I rested well for a month and we invited another friend over, again the same thing: earache. A month and a half later, however, I had my preliminary doctoral defense — the jury and me alone. I had to spend hours defending my work, then saw my cool ex-colleagues again, and I wanted to chat with everyone. Doesn’t that make sense? Yes, of course, but not with sensitive ears. This is my own big fault. Thus, the ear pain kept dragging on. Trust me, I know how to feel my ears. Again, the ears have permanently worsened. The ringing in my ears for the first time is really no longer bearable. It rises above everything else. I could still live with that, but the sensitivity to sound has become so bad! Despite even heavier medication, EVERYTHING hurts my ears, especially my own voice. I can’t communicate, just at a time when I feel so much need to talk to people. I have really great colleagues, but I am unable to speak to them! I love my job at OCAS, and intrinsically I am certainly capable of doing it very well. But I feel that with these ears I am not going to be able to continue doing my job. They are no longer recovering to an acceptable level. My quality of life is too low to continue with this life. Hundreds of times I have fought back after sound trauma, shrouded myself in silence, behaved anti-socially, turned down all proposals for social activities, and locked myself away, until improvement came. But there is a limit somewhere. That limit has been reached. Please respect my choice, my life has become hell.

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If you are having thoughts of self harm or suicide, we encourage you to reach out to the Crisis Text Line at www.crisistextline.org or contact a Crisis Counselor by text or WhatsApp at:

  • US: Text 741741
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3 Comments

  1. Anonymous

    I know… I feel the same hyperacusis, even my voice is painful… And it's frightening. I hope I won't overtake the limit.

    Reply
    • christina

      My poor mother is dealing with this struggle now too. Severe pain Hyperacusis and tinnitus. She can’t leave the house and is debilitated. How have you managed to continue. She says she does not have the strength to go on for much longer with the noice.

      Reply
      • Travis Scott

        Christina is she ok?

        Reply

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