There are so many ways a person can lose their hearing; age, trauma, from birth. Me? Chemotherapy.
Most people assume I was born with a hearing loss, which is fair, I don’t even remember a time when I didn’t wear hearing aids. I feel like as open as I am about my hearing loss now, I’m still not as open about what caused it. I do everything I can to fight against just being labelled and known as “The Deaf Girl”, that I don’t want to add another label to the mix as “The Girl Who Had Cancer”, I felt like that growing up, which I think is a reason I was so in denial and wanting to hide my hearing loss for such a long time.
So here we are, because what better thing is there to do in a pandemic than to face your fears and insecurities via social media!
I was diagnosed with Neuroblastoma at nine months old. Neuroblastoma is rare childhood cancer that forms from left over nerve cells that continue growing even when the rest of your cells have stopped as they should.
The tumour was removed, but came back again when I was eighteen months. I can’t imagine what it must have been like for my family, I can’t even think of what to say to describe what they must have gone through.
A type of chemotherapy called Cisplatin can cause irreversible hearing loss. I had quite high doses of chemotherapy, so my chances of getting out without hearing loss were pretty slim.
However, for some unknown reason, I didn’t have a hearing screening after my chemo, so it wasn’t until I was around three years old that I was tested and found I had Bilateral High Frequency Hearing Loss.
What is does this mean? Let’s break it down.
• Bilateral: both ears
• High Frequency: the hearing loss I have is mainly severe in my high
frequency range - sounds like water running, birds, the letter S T, sounds
like “sh” or “th”
• Hearing Loss: Well that’s quite obvious I think aha
Although it’s labelled as “high frequency”, I still have moderate hearing loss in the other frequencies, so overall my hearing loss is labelled as “moderate to severe”. While I can hear more sounds in the lower frequency than the higher frequencies, it’s still not quite up to scratch. For example, I remember getting, and changing to, new hearing aids when I was nine and hearing a car engine at full sound for the first time. It was quite a low sound, but it’s crazy how even sounds like that aren’t fully picked up. Because despite popular belief, hearing aids DO NOT make your hearing perfect, they just amplify sounds - although as technology has developed over the years, and there are sooo many new settings and types available. In no way am I slating how amazing these tiny little gadgets are!
So what part of my ear is actually damaged? You might ask, great question, I say! So a part of your ear called the Cochlea (shaped like a snail shell), has tiny, little hairs inside it. As it’s commonly known, chemotherapy can cause hair loss, and just like I lost my head hair, eye lashes and eyebrows, it also caused the loss of these hairs inside my cochlea, which usually pick up vibrations that sends a nerve impulse to the brain to let it know there’s a sound. And that my friends, is what my ears lack to do!
So there you have it, my hearing loss in more scientific terms! This is new to me, not something I’d usually talk about as publicly and openly. As always, if anyone wants to talk or ask questions, my messages are always open!
Hope you’re all well and staying safe!
You’re so amazing! 🤍🤟🏼