Daniel’s story

I’m what I’d like to consider to be a typical guy in his 40s. I’m a husband, I’m a father of four fantastic children, I’m a tech nerd. I love superhero movies and science fiction and everything that goes with that. I also happen to be profoundly deaf.

I have a cochlear implant in my left ear and I wear a super high-powered hearing aid in my right ear.

I still remember the very moment that I first discovered that I had hearing loss. I was about 13 years old and I was at my local doctor and he had a device called a tuning fork which he held up to one ear and then the other and he asked me if one was louder than the other. It was at that point that I realized, “hang on, I actually don’t hear that sound from my left ear”.

I left that doctor’s appointment very much in a state of shock and disbelief. It was almost like I needed to convince myself when I got home that my left ear didn’t hear that well and I remember listening to things around the house and covering one ear and then the other as if I almost needed to convince myself that this wasn’t just a bad dream.

My mum was also diagnosed with a hearing loss when she was in her early teens.  She had a surgical procedure, which unfortunately was not successful, and left her with permanent profound hearing loss. Her family wasn’t very supportive and Mum was encouraged to basically hide her hearing loss and not tell anyone about it.

So, given Mum’s history and the fact that whatever afflicted her was likely a hereditary thing, not knowing any better, I decided that I probably should hide my hearing loss from anyone who didn’t know about it.

When I was about 14, I got my first hearing aid. Being a typical teenager there was no way in a million years I was going to be seen in public, let alone at high school, with a hearing aid. Every six months or so I got called out for class to see a visiting audiologist to test my hearing. I would try to hide this fact from my school friends making up some lie as to where I was actually going. I remember feeling really anxious in the days leading up to this test. I thought to myself that maybe if I tried hard this time, I’d actually be able to pass the hearing test, but that wasn’t going to be.

I was far from being a problem-child while I was at school but now that I think back on it, I begin to wonder how many of my so-called behavioural issues actually came down to the fact that I just wasn’t hearing as well as I thought I was.

Fast forward now to the end of high school: I was about to begin a university course and during the summer break I was scheduled to have a surgical procedure called a stapedectomy. This was the first ever surgical procedure I ever had. Naturally, I was nervous and apprehensive about that, but this was also the type of surgery that didn’t go right for mum and effectively made her hearing worse. The surgeon assured me saying that this was generally a procedure that had a high success rate, so I went into it with high expectations.

Waking up from that surgery I remember waking to the worst sense of dizziness and nausea I’ve ever had in my entire life. It was like being on a continuous roller-coaster ride that I just couldn’t get off. Eventually that did subside and when they did testing afterwards they determined that the procedure was initially successful. However, about two or three months after that, something happened. One moment I was fine, next moment I just it’s almost like somebody just pressed a button, like this instant dizziness button, and I just collapsed to the floor in a vomiting mess.

To this day I still don’t know what actually occurred, but it totally wiped out all the hearing in my left ear, so at this point I could no longer pretend that I was like everybody else. I had no remaining hearing in my left ear and the hearing in my right ear actually started to get worse. I was constantly worried that the dizzy episode was going to come back and I got really angry. I literally started blaming every person that I possibly could blame. “What did this happen to me?” I just wanted to be normal.

My hearing specialist at the time advised me against having a cochlear implant. Cochlear implants were still relatively new and there was there was still a lot we needed to know about them. The advice he gave me that was because the right hearing in my right it was still okay, my brain would not be able to cope with the difference in signals. In addition, no surgeon would even touch me because if something went wrong with my right ear I was going to be permanently deaf, so I just had to deal with it.

It was at about this time I got my second hearing aid. I’ve never really had to wear glasses, but I still didn’t want people to know I had hearing loss. So the device I got was quite clever. It was disguised as a pair of glasses and the device transferred the sound from my left ear through the bridge of the glasses over to a little receiver that was in my right ear. It was a hearing aid in disguise.

University life wasn’t easy for me as this was really the first time I needed to grasp the reality that my hearing loss was a problem. It was the first time I ever spoke up to anybody who wasn’t immediate family about it. At La Trobe University there was somebody called a disability liaison officer and she got me connected with somebody who basically sat next to me in lectures and took notes, which meant that I could then record the lecture on a little a little tape device.

When I got home at night I’d have to replay the recording with the notes that she had taken and then, once I’d understood what the lecture was about, I could actually commence my homework. It was exhausting to say the least.

After uni it was time to find a job. I suppose we all hate going through job interviews. They’re a daunting process as they are and I think it’s safe to say that I made an absolute mess of quite a number of job interviews simply because I just wasn’t hearing that well.

I still recall one particular interview where the guy just gave me this look like I was an absolute idiot and I walked out of there feeling about this small and I think what had happened was I obviously misunderstood the question that he had asked me or answered totally inappropriately.

Eventually I did secure work with an internet service provider and I worked in their quality assurance department. It was at this particular point in my life that I got my hearing wake up call.

I was crossing a street in the CBD of Melbourne and I didn’t hear that there was a tram coming down on my left-hand side and if it wasn’t for the intervention of one of my colleagues who literally grabbed me and yanked me back, I’ve no doubt in my mind that it could have been fatal.

That was a massive wake-up call for me, but in my ignorance I still decided to trudge along and just ignore the hearing loss and pretend like everything was okay. I moved into another role at a different company, probably one of the biggest telcos in Australia, and at this point I had a return incidence of this dizziness which then affected the hearing in my right ear quite substantially and I needed to ask for help.

This was the first time in my professional career I’d actually asked anyone for help and I don’t think my employer was really understanding or supportive of what it meant to have a hearing loss. We were in a large open plan office area and where my desk was placed, I basically had my back to where the majority of the office traffic, so if anyone needed to come up and ask me something they were literally coming up from behind me on my left side. So unless they stood in a certain position or tapped me on the shoulder, I didn’t know they were there.

I started to develop this reputation in the office of being standoffish. And I had a simple solution – I just asked them “Can I just be moved to this desk which is over there so I’m actually facing the other direction?”, but they weren’t really accommodating and I couldn’t see why the amount of effort that was involved in moving my desk was worth it.

I had to come up with my own solution, which was to I ask my wife for those little mirrors that women use when they put makeup on. When I asked, she looked at me really weirdly, but I put one of those in the bottom corner of my monitor at work so if anyone was coming up I’d actually see their reflection.

Going through this sort of environment at work when you have a hearing loss…I literally went through the absolute deepest pits of hell and that’s not an understatement. Nobody understood what hearing loss was like. If people wanted to get my attention, they thought the best thing to do was just stand up and call out my name loudly and then, when I didn’t respond, it was this big joke. Then they came up with this really fantastic idea to get my attention by throwing a tennis ball at me. There’s no way in hell that I would stand for that now, but back at that time my sense of self-worth and my self-esteem was so low and I hated not being able to hear well so I just accepted it.

With meetings at work, I found it was often easier to just not contribute at all. There’s nothing worse than when you want to take part and you ask a question or you share your input and you’re told “we already addressed that point” or “what you’re saying has no relevance at all to what we’re talking about” so it just became easier just to shut up and not say anything. Even when I got to work my routine more or less, I’d get to work, take out my iPod, put the earbuds on, and just listen to music through the whole day because if I was doing that, it meant I didn’t have to talk to anyone. I became really socially withdrawn. I became really depressed.

I hated where I was. It was a toxic environment but I was so scared to leave and go through the whole daunting process of having to look for a job and go through interviews again. And I thought “who on earth is going to want to hire a guy who can’t hear?”.

My biggest saving grace was my wife. She had this unique way of getting me to change the way that I was thinking and I started to slowly accept that I can’t change the fact that I don’t hear so well, but I can change my attitude.

Up until that point, if I misunderstood something that somebody said, I would say nothing or just say “I don’t know what you’re saying”. What I started doing instead was repeat back to them exactly what it sounded like to me and often with a really confused tone. I’ll give you an example: we had gone away on holidays and we had had a really busy day out and as we’ve got back to our accommodation my wife said “oh geez! After all that activity I need a nanna nap” and I just looked at her and I said “what do you mean you need an enema?” because that’s what it sounded like to me. And she laughed and she said “Daniel, you’re an idiot”, but I learned that the biggest thing was basically learning to laugh at yourself because if you can laugh at yourself you’re not so concerned about people laughing at you.

I knew I had to get out of this toxic environment at work because it was killing me, so I looked around at other options that were available and I discovered that there was a course that I could do on audiometry. I thought “what better job for me to get into? I’ve got this experience that I can share with other people and nobody has to go through the crap that I did”. So I got into that course.

Someone who I will always be indebted to is Dr Elaine Saunders. I needed to find a clinic to do my clinical placement at and I just randomly mailed people – her among them. I said “look, can I do voluntary work?” and she saw me for who I was and for the value that I could bring to the role and she said “look, no, Daniel, I want to offer you a job”.

I started working there as an intern audiometrist and I’ve been working for them ever since. This change in attitude was what prompted me to re-look at cochlear implants and see whether or not they’d be a possibility for me. I went through the assessment process, and in the end, I had the cochlear implant. That was probably the best thing that I could ever have done.

Denial of hearing loss is a negative thing. You don’t do yourself any favours. The moment I started accepting my hearing loss and not letting it define me, that’s when things turned around. I’m hearing better now than I ever have. What was once by biggest weakness now became my greatest strength. We’ve just got to keep advocating for ourselves and break through the stigma of hearing loss.

Read more about Daniel’s story: https://talkinghearingloss.wordpress.com/