I Recently Lost Over 60% Of My Hearing…… What Now?!

Around March 2022, I noticed I was hearing music differently. Anyone who has seen my background on a call has probably noticed the drum kit and guitars (that’s my 4 year old’s kit beside mine, in case you were wondering!). I was finding songs to be particularly ‘bassy’ and I couldn’t make out frequencies the same way as before.

Being a typically useless individual when it comes to having things checked out by a Doctor, I was finally referred for a tinnitus and hearing loss check in the latter part of 2022. The results weren’t initially all that bad; some high frequency hearing loss and tinnitus where no further treatment was advised, perhaps all rather normal for someone my age who has probably spent a few too many nights close to speaker stacks and DJ’s!

I got on with work and life.

As the months progressed, I noticed things were getting worse. I was struggling to hear my wife and kids properly at home, I couldn’t watch the TV at night without subtitles and despite continuing to listen to music and attend gigs, it was clear something wasn’t right. All the signs pointed to “Glue Ear”, which is what children often suffer from and it can be fixed with a simple operation.

As 2023 progressed, I found myself getting progressively more tired. Everything was becoming more difficult, from getting the kids ready for school, to conversations in the office, to missing out on normal daily activities like chilling out to watch a movie.

I attended multiple workshops in Copenhagen with my wider Tech team and also with Google and AWS where it was becoming apparent that I simply couldn’t hear people. It all became very stressful. I even had to take 2 weeks off work on doctor’s advice due to pure exhaustion.

I finally received a date for a further consultation for Glue Ear. During that, I was told that if the audiology reports came back as expected, they could operate on me the very next day! I absolutely bounced home and told my kids that “Daddy’s ears will be fixed tomorrow”.

I attended a brilliant Audiologist in Edinburgh who ran through multiple hours of in-depth tests. However, he quickly discounted Glue Ear, saying that my ear drum was actually perfectly healthy. The next test gave the following audiogram and a rather shocking discovery.

I was told I had suffered a moderately severe hearing (and permanent) loss called “Cookie Bite Hearing Loss”. It’s where there’s significant loss of mid frequencies, which is where things like speech and music tend to sit! It is apparently genetic and very rare. I am only the third case my audiologist has ever seen.

He asked how long I had been suffering. "Oh, over a year now". His response was "wow, huge well done for getting by for so long with no help, you have the hearing I normally see in 90 year old men, you must be absolutely exhausted with the constant concentration effort".

I had to go home and tell my kids that my ears weren’t going to be fixed that day.

3 days later, I spent another long session getting hearing aids configured and tested. They are top of the range, “kick ass amplification” (his words, not mine!). The difference is immediate and, frankly, pretty amazing. That said, there are major limitations, they aren’t perfect in every scenario such as very busy and noisy environments, but they have given me the chance to hear people again, especially in the office.

I was told that my brain is going to re-wire itself over the next 6-12 months as it re-learns to hear sounds. That’s going to come at a physical and emotional cost and I am treating the whole thing as an extended rehab, along with some limited talking therapy, which I have found very useful.

I am almost entirely positive about the whole thing. Life can sometimes present you with significant difficulty and you need to be able to adapt, even when things are bloody hard.

I also believe there are two choices in these scenarios; slide into a depression, feeling sorry for myself and becoming angry at something I can’t change, or make positive strides in my attitude and approach. I've got a job to do and kids to raise.

Yes life became more difficult. Work became more difficult. But it’s through adversity that we can achieve amazing things. I'm still playing those guitars and drums and I won't let it take that enjoyment away.

Why am I sharing such a story?

Numerous reasons; I believe vulnerability, especially in leadership, is important. I’m a human being, not a robot, navigating a crazy life as you all are. Even those of you I have engaged with in person in the last year may not have even known (I was largely lip reading you!).

In sharing the story at work and on LinkedIn, I've now spoken to industry colleagues with similar struggles and even another amazing Trustpilot employee who is battling with their own hearing loss.

But mainly I share it because resilience is one of the most important skills you can learn and will stand you in great stead for whatever comes next.

Also, amen for the staggering advancements in technology, which give people like me their lives back!

What Next?

I have a significant period of adjustment and rehab but I am buzzing with ideas about how this can be a force for good. I'm likely to use social media in a constructive way to raise awareness. I've already started exploring charities I could raise money for and am even considering learning sign-language.