Lynsey Neilson: Why I chose to lose my hearing when I was 21 years old

Posted on October 10, 2017

-So you were born like that?
-you were born deaf?

My hearing impairment always makes itself known at inopportune moments; be that through a squeaky hug or through me completely missing an entire conversation. When asked how I lost my hearing, I have a variety of smart answers, but the truth is that it was a choice.

I chose to lose my hearing when I was 21.

Hearing loss is one of the lesser known, more permanent side effects of some cancer treatments. In my case it wasn’t the cancer which caused the issues; it was the platinum-based chemotherapy which blasted the decibels. Should a man ever win my heart it will certainly not be with a platinum engagement ring.

My consultant was nonchalant. I was sent for monthly hearing tests and told that she could cope with me losing a few of the top notes. I merrily signed the paperwork; if she could cope, so could I. When you’ve got aggressive, late-stage cancer, maintaining your hearing tends to be the least of your problems. And anyway, the hearing loss wasn’t guaranteed; the odds were good that I’d get by unscathed.

Three rounds of intense treatment saw off the high pitches I’d retained into adulthood but I barely noticed. Sadly, the chemotherapy was as ineffective at killing off the cancer as it was my hearing; the tumour had reduced in some places but was making short work of my liver. High dose chemo with stem cell transplants were required and with that came the likelihood of more substantial hearing loss. At that point, however, my options were clear. Drop a few decibels or drop dead.

I didn’t lose my hearing overnight. In fact, it was the noises I could hear which alerted me to the fact that things weren’t quite right. Slowly little sounds were creeping inside my head. The worst was a ringing in my ears. It was a noise I’d heard before; that heady buzz the morning after a gig. Usually by mid-afternoon following the concert it would wear off, but this was different. No matter what I did it only grew louder and lasted long into the night.

As the days went by I made my visitors move ever closer to my hospital bed so I could hear them speak. The sterile whiteness of the hospital room was deafening; I just needed to get outside and I’d be fine.

Once treatment was over I was passed to different teams of medics to take stock of the carnage cancer had left behind. It soon became clear that the issue was not the hospital room at all, but that I had a lost a lot of my hearing.

I say I lost my hearing; I’m not Deaf and I’m not fully hearing. I’m caught somewhere in between, in the no man’s land of the hearing impaired. Clarity of speech is largely lost which often leaves me repeating conversations in unintended cockney rhyming slang, trying to decipher sentences like hieroglyphics.

Once an intrepid traveller, I had to re-learn airports, train stations and public transport through less able ears. Even now, some 7 years later, flying alone leaves me anxious as so many of the announcements are for hearing ears only.

So many sounds are different to what I remember. I’ll hear a memory of a song I used to love but now the orchestra has taken on a menacing tone; the delicate flutes and piccolos have been culled but the cello plays on.

The thing I miss most of all though, is hearing nothing. Cancer stole my hearing, but it stole my silence too. Whether the drone takes on the guise of running water, a tuneless radio or a high-pitched pinging noise, I never, ever have peace and that’s what I crave the most.
In some ways tinnitus is more annoying than the hearing loss. I slam a broom against the ceiling, determined to make my neighbour turn down his TV only to discover it isn’t on at all. The noise I am surrounded by and which I cannot escape is not real. It’s not in my ears; it’s in my head.

I was told at diagnosis that my future would be about living with cancer. What I didn’t understand is that I must live with its consequences all of my life. The hearing loss, the tinnitus, they will never leave me. The tinniness in my ears is like the ringing of a shotgun blast; long after the shell is fired and the damage is done. My body has healed but the echoes of the shot remain for only me to hear. Constant reminders of a time I’d rather forget; the cost of survival.

Still, ask me once more, decibels and death or silence and survival? I’d choose the same again. I’d pull the trigger myself.

Lynsey Neilson is a (late) twenty something, Community Fundraiser based in Glasgow. A cancer diagnosis at 21 caused bi-lateral hearing loss, a career change and lots of worry for her family.  Lynsey likes sewing, flamingos and empire biscuits. She has been cancer free for 6 years and hopes to stay that way. 

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