My Hearing Loss

For a long time, I’ve struggled to come to terms with my hearing impairment. I don’t have any desire to be different to the hearing world, yet I am. Every day I face some kind of struggle, whether it’s a stranger in the street asking for directions, a trip to the Jobcentre where I know they are going to forget I can’t hear them shouting me across the room, ordering food at a cafe, sitting with a large group of people and not being able to keep up with their conversations – all of this and more are things I go through every day.

I always say to myself that my hearing doesn’t define me, but sometimes it’s hard to listen to my own advice. Looking for jobs is something I find extremely difficult because of things like ‘needs good telephone manner’, ‘good oral communication skills’ ‘customer service’ makes me feel uncomfortable inside. I know I’m smart, and I know I can do a lot of things, but I lack the confidence. And the ears.

I don’t use sign language, and I think that is something that surprises people. The only thing I really know in BSL is the alphabet and how to say ‘My name is Nicola’. I’ve always been able to hear my own voice, so I’ve never needed sign language. I can talk very well, a lot of people say to me ‘you wouldn’t know you were deaf because you talk so well!’ It’s not because I can’t hear things, it’s because voices don’t sound so finely tuned as they should do.

I have a disorder that I share with my mum and brother called CAPOS Syndrome. It is very rare, in fact we seem to be the only people who have it. You’ll probably want to know what CAPOS stands for, so here goes…

Cerebellar Ataxia

Areflexia

Pes Cavus

Optic Atrophy

Sensorineural deafness

A lot of complicated things, basically. The Ataxia makes our balance quite bad, we all had ‘Ataxia attacks’ when young which started all this off. Areflexia points to the fact that we don’t have any reflexes – for example if you hit our knees we wouldn’t jerk our legs upwards. Pes Cavus means that we have high arches in our feet (or at least my mum and brother do, I seemed to have escaped this one slightly) which is caused again by our balance issues, needing to clench our feet in order to stop falling over so much. Optic Atrophy highlights the damage done to the nerves in the back of our eyes, meaning we have poor eyesight, but again I’ve largely escaped this one, only suffering from distance issues and a squint, whereas my brother needs a guide dog. Both my mum and brother have got ‘wobbly eyes’, in the sense that their eyes seem to be wobbling around like jelly constantly. Mine don’t do this unless I’m really concentrating on something far away.

Then the biggie: Sensorineural deafness, the one I really struggle with the most. I find it unbelievably frustrating to not be able to follow conversations, even with hearing aids in. My mum and brother are again, worse than me with this one. This kind of deafness is to do with the middle ear, and the damage caused to the nerves.  It reduces our ability to hear faint sounds, and so even when talking at a normal level voices may still sound muffled or unclear. Think of an out of tune radio – that’s the kind of noise we hear.

Throughout school I was bullied for my hearing problem, which I didn’t help with because I was too shy and quiet to say anything to shut them up. I’d have people mouthing ‘can you hear me?’ at me, get told I ‘wasn’t really deaf, just pretending to be to get attention’. It hurt and it really didn’t help my confidence. I didn’t do as well in school as I could have, skiving off frequently, getting into trouble with teachers and school nurses, falling out with friends. I definitely had problems with concentration fatigue, zoning out in lessons when the teacher was talking because I couldn’t keep up with them. But I genuinely tried hard in the lessons I enjoyed, such as English. I came out of school with an A in my GCSE English, which proved I was capable. I just would’ve been better as a student on her own or with a couple of students, rather than a whole school.

What I would love is to be able to communicate and hear well, but that’s never going to happen. I know i can work as I’ve done lots of volunteering, I’ve worked in a nursing home as a cleaner, I’ve done an internship in Reading Resources. I even went to university to study English, which amazingly I came out with a 2.1 degree in. It’s just about finding my feet really, finding the courage to get myself out there, and working out exactly what I want to do. I know I’d like to try to get somewhere with writing, but I have no idea where to start.

I do love my life as it is currently, I’ve got my own flat, a lovely partner, a great family and some sweet friends. The only things I’m lacking in are pets (no pets allowed in my flat), enough money to save for a mortgage and a nice job that I enjoy. I hope something will come along and I’ll have the whole lot, maybe I’ll get married and have children. I’d love to get married. I think it would be lovely. I’ve had my partner for 8 and a half years now. He’s so kind and understanding. I don’t honestly know where I’d be without him now.

What I’m trying to say with this article, I suppose, is that deafness is a barrier to a lot of things but at the same time it makes me who I am. I might have been a totally different person if I wasn’t deaf. I like who I am now, even though I never used to. It’d be great to hear of any other people with Sensorinueral deafness and what they do, do you work, how did you get there? I’d really love to know. Inspire me, please, sometimes I feel so down.