Invisi-disability

I have a disability. Not really a life limiting one. Not a physically obvious one. Not one that makes people utter stupid, thoughtless phrases such as “oh! Poor you!” Not one that means I need a blue badge to enable me to park closer to the store. None the less, one that still forces me to tick that little *yes* box on a job application “do you consider yourself to have a disability” (keeps employers happy, they can then refer to themselves as an “equal opportunities employer”) and the one that I still have to declare on my car insurance application-DVLA aware, no restrictions. 

I find myself apologising. 

-I’m terribly sorry-

Or explaining myself: can you please stay to my right, or make sure you are looking directly at me when you speak to me, could you please try not to mumble so much. No, I don’t need to lip read, I just need to be able to process that you are talking, to enable me to hear you. Just because you’re sat on my left, can you let me know you’re talking to me by placing a hand on my arm, or waving at me, or whatever. 

-You see, I’m partially deaf- 
My disability is completely invisible, I don’t have a hearing aid like a homing beacon pointing out my faulty ear, I don’t walk with a crutch, I don’t have a dog or a stick. Most of the time, people are unaware of my deafness. This also means that when I do feel the need to inform people, for example in a busy hospital ward, where I’m trying to hear what the consultant is saying, or at a Christmas party, where the music is booming, but I’d really like to join in on the conversation going on to my left, I constantly run the risk of being treated differently, just because I sometimes have to ask people to adapt something ever so slightly.

 The change in people’s behaviour  is immediate. It’s obvious and it’s cruel. 

It’s like I suddenly become less of a person. People feel the need to dramatically slow down their speech, to address me in monosyllabic tones, they look at me like my IQ just dropped 50%. They sometimes even defer to my husband. “Can you explain to your wife” 

You could say, at this point, that I am asking people to treat me differently, by politely requesting that they adapt things slightly. I’m not. Does someone who is wheelchair bound deserve lesser facilities because they request a ramp up some steps? Does a blind person expect their food in a restaurant to be thrown willy nilly on to a plate, because, why should a blind person need it to look pretty?! 

Are we (those of us with disabilities) any less of a person, just because we have a part or two that doesn’t quite work like it does with the majority? Look at cars. We could both buy an identical vehicle, but one could get a puncture. Is the car less of a car? Is it less valuable because of one single puncture? No.
Adapting to deafness, and the way people can sometimes treat me as a result has probably been the most difficult part. I wasn’t born with it. In my very early 20’s, I was diagnosed with a brain tumour. The subsequent surgery to remove the tumour meant that I woke up after 3 days in ICU with the connection between my ear and my brain completely and permanently severed. I knew it would happen. It was discussed at length between the surgeons and myself. I knew it would never be reparable. That modern medicine wasn’t quite clever enough to find a way to artificially assist my hearing. 

What I wasn’t prepared for, is how loud and overwhelming it can be to be partially deaf. 
Loud? Did I say loud? I did. Now hear me out for a minute (pun intended!) before my op, I had two channels through which I could process noise. Two receptors. Filtering out the background noise from the conversation I was in. 

After my op; just one. 

One massive rush of noise, noise from all around me like stepping outside in to a storm with howling winds so loud you can’t hear yourself think. One huge confusing jumble of sounds, that my brain just couldn’t separate in to any kind of useful information. I would often find myself screaming at everyone to just shut up! Sitting there with my finger firmly wedged over my “good” ear, or bursting in to tears because someone has interrupted me whilst I was speaking, and I could no longer process my own words, or hear theirs. 

 

this is what brain surgery looks like!
 
Even now, 5 years on. I find myself overwhelmed sometimes. It can be simple things, like a busy queue in a coffee shop, music playing too loudly in a store, my husband trying to talk to me without pressing mute or pause on the tv, the combination of the fan in the kitchen and the toddler whining, or the teenager mumbling about something makes me feel dizzy, the noise of an open window in the car disorientates me. I cannot go out cycling with my husband, because it’s dangerous for me to be in traffic. I cannot judge the speed a car is approaching from behind, because my stupid hearing doesn’t tell me the car is behind me, it tells me the car is all around me. 

I can never ever locate where a noise comes from. 

Calling my name to get my attention will see me do a full 360 unless I already know where you are stood. The noise of sirens when I’m driving means I am on edge until I can see the blue lights and know that I won’t be *that* person that didn’t clear the way for an emergency vehicle. 
I also can never tell if a horn beeping is aimed at me, but I’m a sensible driver, so it probably never is 😉 

So there we have it. I’m partially deaf. Look at me with my special label! 
But I am not my label. I am me. A human being. It’s Just sometimes you won’t know if I genuinely can’t hear you, or if I’m actually ignoring you 😘
For more about my journey, take a look at the blog post by Mama Baby Bliss

Zx 

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11 thoughts on “Invisi-disability

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  1. Sorry, I couldn’t find a way to respond directly to your comment. No I don’t speak BSL. I did sing and sign with my little one but he dropped it as soon as he could speak. I can hear pretty well it’s just I don’t hear certain tones so people sound like they are mumbling. And Americans on tele just sound muffled.

    I’m fine if we sat in a room together talking. But put me in a noisy restaurant and suddenly I can’t decipher what people are saying as easily. I’ve heard you listen with your eyes as much as your ears. I have a friend who can’t hear if she’s not looking at you. She doesn’t lip read. She just can’t recognise you speaking to her unless she sees you. I also have had permanent tinnitus since the vertigo started 4 years ago. I’m used to it now but it’s annoying ne we being able to fully enjoy silence. I was told the tinnitus is making up for the hearing loss. The brain is a clever, complex thing huh.

    It’s nice to know others experience similar. Albeit yours is for a different reason. We should start calling it the deafness spectrum lol. We aren’t all the same lol

    I also don’t declare mine on forms as I don’t feel it affects me enough. I’m pretty good if I wear my hearing aids but they can irritate me after a few days.

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  2. This post is so interesting for me Zoe. I have inherited hearing loss which is no where near anything like yours. I have hearing aids I can choose to wear to make my life easier. I suffer with vertigo too. It’s interesting to read you describing how sound affects you. I often say to people “sorry I can’t hear, I didn’t put my hearing aids in ” and they laugh. And I’m like “no really” or even with them in I’m like “I’ve got them in but I can’t hear you”. I do often look at hubby like ” what” and wonder how he’s knows what people said when it just sounds like muffle to me. I’ve got used to watching TV with subtitles and hate watching it without them now. I say it’s like reading a book and watching the program/film all in one.

    Thanks for this honest post.

    Liked by 1 person

    1. I always watch with subtitles on! Mainly because I hate having loudness in the room (which probably doesn’t sound as weird to you as it does to others!) I have vertigo too, or something similar. They cut through the nerve responsible for balance on that side, so I had to learn to balance/walk again Even now I wouldn’t be able to “walk the line” like they do in the US for sobriety tests!

      It’s strange isn’t it, how people don’t expect you to be deaf, after publishing this post I had friends/acquaintances saying they didn’t have a clue!

      Thank you so much for taking the time to pop over an comment.

      Can I ask. Do you speak BSL? I’ve had a couple of times where I’ve said I’ve struggled to hear and people have switched to sign language, which I don’t speak at all 😩. It’s almost embarrassing saying I’m deaf, but not being able to sign. Xxx

      Liked by 2 people

  3. ‘I just need to be able to process that you are talking’. Exactly! Great blog.
    I have partial hearing loss and wear a hearing aid. The sounds that I hear the least are human voices, and those I hear ok are all the crispy, crackly and metal-clanking ones. Eating out at restaurants, I rarely understand what’s being said, and I struggle to get the gist of movies at the cinema without subtitles. Just to be extra-unkind, my brain gives me tinnitus to make up for the sound lost.
    Thanks for sharing. Best wishes 🙂

    Liked by 1 person

  4. Goodness, you really have been through so much. Thank you for sharing your story. I know someone who lost hearing too, but in their teens. It’s partial as you have described. Unseen disabilities can be so difficult for people to understand. Thank you for sharing with the #DreamTeam x

    Liked by 1 person

  5. Oh I am reading this and nodding like the Churchhill dog. I have approx 50% congenital hearing loss in both ears. The bit about everything being too noisy made me laugh because its true but confuses people no end when you mention it. I simply cannot seperate out different noises so if there is more than one noise present it just becomes a big loud muddle (as you know)
    #dreamteam

    Liked by 1 person

  6. What a wonderful honest post we as a society probably don’t take deafness as serious but it is if you have to live with like yourself thank you for sharing very important message to get out there. Happy that you well now that must been very scary to go though what courage you have #dreamteam

    Liked by 1 person

    1. Ahh thank you! I’m in my 6th year with no change to the tumour, so technically in remission! I still have scans every 2 years. I don’t think of myself as brave, I just keep swimming (as the saying goes!) thank you for popping over x

      Liked by 1 person

  7. Thank you for sharing your story. I can understand how strange it must have felt for you after your operation but the important thing is that you are well. Some people have no idea how to deal with someone else’s disability and I think they just panic when they realise. I was an SEN teacher and most of my students had mild learning disabilities which means really you wouldn’t be able to tell just from looking at them. Everytime we were out on visits people would start being overly nice and quite frankly a little patronising as soon as they realised we were from a special school. So I completely understand how annoying it must be for you. Thank you for sharing with #StayClassyMama

    Liked by 1 person

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