CF and Deafness

A disclaimer before I start, I am not as deaf as I portray, I wouldn’t even consider myself “deaf” per say, more like “hard of hearing” or having a “hearing impairment”. I think one of the reasons for calling myself deaf is that I think I’ll be taken more seriously, or people are less likely to question me when I ask them to repeat themselves or I “huh” them a million times across a room (sorry Henry).

I lost some my hearing when I was about 15 years old, although I was in denial for a while… well maybe not denial but I was just so mortified that I was told I needed hearing aids before I’d even left school it was easier to just tell them no. The reason for my loss of hearing was that I was on a whole cocktail of IV antibiotics for the mycobacterium abscessus in my lungs at the time. There is a group of antibiotics that can cause hearing loss (ototoxic) called aminoglycosides, the one that I was on was Amikacin, which is a brutal medication by the way, it made me so unwell, I lost about 10kg in the space of a month simply because I just couldn’t eat.

While powerful against certain infections, aminoglycosides can damage the sensory cells in the inner ear that detect sound and motion which can result in dizziness, tinnitus (buzzing / humming in the ears) and of course hearing loss. I hadn’t actually been consulted that this could’ve been a risk to begin with, but I can’t imagine it would’ve made much difference to whether I accepted the treatment or not because even at that age, I would’ve chosen my lungs over my ears.

I’m not sure how I realised my hearing was going, I think I just very nonchalantly mentioned to the doctor that I was having difficulty hearing the difference between B and D sounds at which point he replied, “yes that doesn’t surprise me” and as you can imagine I was a bit like “?? hmm sorry what” (literally hahahaha). So off I go to audiology in the middle of one of my three-week stints and am told I’ve lost some of my high frequency hearing which is what enables us to distinguish similar sounding sounds, known as consonants (like the Bs and Ds and Gs and so on). Because of the nature of this particular type of hearing loss, I mostly struggle in busy / loud environments, with people who mumble, and when someone tries to spell something out to me letter by letter. Which is why I’m trying to learn the NATO alphabet without having a prompt to hand so I don’t come across as a complete moron who doesn’t pay attention. 

I finally accepted hearing aids when I was 17, but still at this point was still quite self-conscious, I hadn’t reached the place of peace I have now with how people perceive me so very infrequently wore them. But as time went on, I realised there was no shame in having to have an aid in the same way so many people wore glasses, why should hearing aids be any different? But as we find numerous times throughout this life, nothing is ever equal or fair and having a hearing impairment isn’t treated with quite as much patience as a visual impairment.

I was talking to one of the various audiologists whom I’ve met throughout the years, and we were talking about how people with a hearing impairment can be considered as rude or impolite, children are often seen as “naughty” simply because we / they hadn’t quite picked up on what someone has said or we’re “ignoring” their attempts at getting our attention. I’m not sat here trying to tell you all that this is the worst miscarriage of justice ever, but it is bloody demoralising that I feel I always have to defend myself which is why I frequently find myself announcing “sorry I’m deaf”, “sorry I’m not wearing my hearing aids today” (even if I am) just so they don’t even have a chance to think I’m deliberately ignoring them or being careless in my listening.

What I do find interesting about my own experience is although I can’t lip read, it wasn’t until covid hit that I realised how much I go off facial expressions when formulating what someone is saying to me. So when everyone started wearing masks, I had no bloody idea what was going on, the mask must have muffled their voice of course but it really was just noise to me, almost as if I had been stripped of a whole other sense.

Now, being deaf is always going to result in a couple of funny exchanges. So, as I find crowded spaces particularly difficult to hear in, I have a note on my phone that says “I can’t hear, please write it down” or words to that effect. So this usually means I end up having conversations with boys in the club in my notes app (which I keep forever by the way and let me tell you they make for some interesting reading a couple of years down the line). Sometimes boys will try to talk to / dance with me, put in quite a bit of effort to get my attention, so when I whip out my phone, I can look into their eyes and see them get the ick and they (without shame), write their name down and walk off and I’m like right cool that’s the end of that then. But, the majority of the time, I think they find it quite endearing, and it makes me so much more intriguing to them.

I did, however, once get into a spot of bother with it. I was in the club, talking to a guy I knew, just having a friendly conversation but because I couldn’t hear him, I was very close to his face and his mine purely so he could talk straight into my ear. Within a couple of minutes, his girlfriend comes storming over, “omg Annabelle let’s do some shots” pulls me by the hand and drags me to the bar, buys us both a shot, does a little clink and cheers, looks me dead in the eye and says “just so you know, he’s in a relationship so don’t bother trying any of that” and I was GOBSMACKED, I mean I can see why she thought it looked like that but this guy had literally introduced me to her not two hours before this. I can’t remember if I went to him after that to apologise and explain that I wasn’t trying to get with him or if someone else told him what had happened, but I did see them have a screaming match in the smoking area later that night, so I made a beeline for the exit because I did not want to be dragged into that.  

So, in a nutshell, that’s my antibiotic induced hearing impairment. A pain in the arse most of the time, but always creates a bit of entertainment and character building so I’m not mad about it and let’s face it, that’s a welcome walk in the park compared to six week hospital admissions and bleeding lungs.