Why is hearing ‘loss’ seen as a negative?

So many of you reading will already know, I’m more deaf than hearing. I was born profoundly deaf in my right ear and as i have got older, the hearing in my left has started to deterioate. At times, it can be difficult especially in settings with lots of background noise. Although i like to think i have the art of lip reading down to a tee.

Something I’ve always struggled with is my identity. I don’t quite cut it as a deaf person, i don’t identify myself as part of the deaf community and have often been made to feel ‘I’m too hearing for it’ but i also don’t identify as a hearing person either. This is something that had previously made me question my place in society. The truth is, i still don’t feel as though i fit in BUT i am more than okay with that. I am just me and i can live with that.

I never used to tell people of my hearing or lack of. It’s something i felt embarrassed of but as I’ve got older, I’ve realised I’m proud of my difference. In a lot of ways, it makes me who i am. The experiences I’ve gained throughout my life have made me more compassionate, understanding and aware of the internal battles everyone faces; just because you can’t see something, it doesn’t mean it isn’t there.

Although i have noticed, hearing individuals have a negative perspective of hearing ‘loss’. The more open and honest i am, the more comments I’ve noticed such as “poor you” or “can’t they fix it” because of the type of hearing loss i have, hearing aids/ devices do not help. Even if i could “fix” it, I’m not sure i would want to. Some may gasp in horror and think “why would you not want to hear?” It’s simple, I’m proud of who i am, that includes my bad hearing. As i mentioned earlier, it’s made me who i am.

A while ago, as part of an assignment i had to look at ‘deaf gain’. To begin with, i thought it was a strange concept. It looks at how deafness is a gain to not only deaf individuals themselves but society as a whole. For example, deaf people gain increased and improved visual abilities, alternative ways of thinking and problem solving and social structure. Whereas society gains from the contribution of deaf individuals i.e. BSL.

It wasn’t until i read further into deaf gain that i realised, actually, this is part of me. In a way, my deafness can and will be used to help others.

I’ve often said, i wouldn’t want anyone to feel how i did growing up which was alone and isolated. However, if i can make a difference to at least one person’s life from my own experiences; I’ll know it will have been worth it. I stand by this but i know now that even if i can’t possibly impact someone else’s life in the way that I’d hoped although, i don’t think I’ll ever stop trying. It has still been worth it, my experiences have made me a better and stronger person.

 

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Bone Anchored Hearing Aid

So today I started the trial of my bone anchored hearing aid.It’s different to say the least. 

I think because I’ve had no hearing at all in my right ear for the past 22 years and the hearing in my right side has dropped over the past few years it is a massive change, one I’m not too sure of at the moment.

The plus side, I can hear absolutely everything! So there’s no more of my son rooting around in the kitchen cupboards because he thinks I can’t hear him.

There’s a bit of an annoying noise continously in the background. I’m not sure if that’s there for people with normal hearing but if it is, makes me glad I’ve missed out on it for the past 22 years. I also don’t have an excuse to miss hear inappropriate things anymore. Immature, I know but it was always entertaining!

Although I can see why others find them extremely helpful because they are, it’s life changing. It is only day one though and I’m still a bit skeptical as it is a massive change but I shall update you all as time progresses.

It’s not all bad

When I was younger I used to think there were so many disadvantages to having microtia. 

In a way I felt like I was on the outside looking in on everyone else, I found that it took me a little longer to register what had been said. By which point it was a little too late to join in conversations. Or I never had the confidence to speak up and give answers just in case what I heard as the question, wasn’t right. 

That’s why now I try to encourage people to talk about it, so they have a better understanding and don’t feel alone. 

I didn’t have a true understanding of microtia. So I felt as though no one else could relate. But the more and more I find out about others with microtia, the more I feel like I have a sense of belonging. I didn’t feel like I needed to try fit in with others because there were others out there. 

The more I talk about it, the more confidence I gain. The more I realise that actually having microtia makes me who I am and that isn’t a bad thing. 

My aim is to help others like me, so they don’t have to feel alone by it or even to help them realise that it has its perks. Like saving on Cottom buds, you make up pretty cool stories on how you got it… let your imagination run wild! Miss hearing things, the things we hear instead can be funny and inappropriate making it that little bit better. Or my personal favourite, “sorry I didn’t hear you” to get out of things when I was younger. 

If we were all the same it’d be very boring. Besides, as I’ve grown up I think being different has made me more passionate about helping others, compassionate and opened my eyes to the world a little more. 

Proud to be different

For years I tried to hide the fact I had microtia. Feeling it was something to be ashamed of. Over the past few months I’ve gained the confidence to be open and honest about it. Something I wish I had done along time ago. The more open I am about it the more understanding I find people are and interested to know more.

I now realise that the people who would laugh and make fun were the people with the problem, not me. I spent so long wishing I was different, wishing I was “normal” but now I can hold my head up high and say that I am proud to be different. If I didn’t have microtia and hearing loss, I probably wouldn’t be going into the career path that I am now. In a funny kind of way, it’s given my life more meaning. A purpose, to help others like me. Especially children, to help them be proud and no know that they aren’t alone.

I’d previously been torn between whether to have surgery or not but now I’m 100% certain surgery isn’t for me. Simply because I’m proud to be different.

Surgery or no surgery?

I recently had an appointment with a Plastic Surgeon and a Maxillofacial Prosthetist. The surgeon talked me through the procedure of using cartilage to make a ‘new ear’ and shown me pictures of his work, it was fascinating to see the various stages involved. I was also pleasantly surprised at how ‘normal’ they looked.

The Maxillofacial Prosthetist spoken to me about the possibility of having a prosthetic ear. Which would involve having part of my Microtian ear surgically removed, pins inserted into the bone and then a prosthetic could be made identical to my left ear. Although the prosthetics are very realistic, the thought of it being removable and not truly apart of my body is off putting.

I was also informed that if I had the surgical option and was unhappy or decided I wanted the prosthetic at a later date, I could but it wouldn’t be possible to do it the other way around.

At this appointment, I also had another hearing test. I’m profoundly deaf on my right side and have moderate hearing loss on my left. After the hearing test, I spoken to a Doctor about trialling a Bone Anchored Hearing Aid and also spoken to a lady from a charity called National Deaf Children’s Society who informed me of all the various help out there for people like me and their families. It was eye opening to see just how much help there is out there.

The staff at Birmingham Children’s hospital were amazing and although I’m 21 still made me feel comfortable and informed. Each and every single person I spoke to was helpful, not only that but seemed to enjoy the job they were doing.

I’m still struggling between the decision of having surgery or not. On one hand,  I feel I have lived this long with it and have begun to accept its a part of me and it makes me unique and and on the other hand it would be nice to freely wear my hair up without worrying.

Is surgery the answer?

The more I’ve looked into Microtia and the people it affects, the more I’ve learnt.

It makes me sad to see how many young children having corrective surgery to “fix” their Microtia. It makes me wonder if bullying comes into the final decision of such a big operation, for such young children.

I myself, was often taunted for “not having a proper ear” and at times it made me feel as though I wanted to be like everybody else. I wouldn’t talk about it, I’d hide it effectively allowing those who put me down to win. I’ve began to realise that it is a part of me. This is why I’m leaning against not having corrective surgery. It has made me the person I am today and given me the passion and determination to strive for a career in audiology, in the hopes of helping other children.

Despite being bullied myself, I do not think surgery is the right option. Children need to know that they are beautiful not despite it but including it, it is a part of who they are.

They need to be made aware of the fact there is nothing at all wrong with the way their ear looks they are unique and perfect in their own way, they should be taught to love themselves rather than change things because society does not fully understand it.

It’s a new world

As well as unilateral Microtia,  I have poor hearing on my “good side”.

When I was at school I would regularly see the audiologist for hearing assessments, something I chose to stop at 16. Even in school, lip reading is something I relied on but over recent years it’s something I became more and more reliant on. It wasn’t until I started college again I realised just how bad my hearing loss was. During group discussion I would hear noises rather than words and it would make me feel anxious because I felt unaware of what was happening around me. I’d always find myself asking people to repeat what they’d said 2 or 3 times and eventual give up guessing what they’d said because I still hadn’t caught it. Sometimes it would take me a little longer to register what had been said because I’d only heard curtains words and had to piece it together, by which point people already think i’m a complete weirdo because i’m only just replying to something they said 5 minutes ago. I used to be good at placing myself where I needed to be in order to hear to the best that I could but college threw me out of that comfort zone. That’s when I decided I needed to do something about it so I got myself referred to a ENT doctor, this is so he could discuss my options of corrective surgery for my Microtia with me too.

I had my appointment and was then referred on to a specialist surgeon and for a hearing aid fitting. My first appointment for my hearing aid moulds, I found out my ear canal is considerably smaller than that of a “normal” person’s. So when I had my hearing aid fitted, it was something even the audiologist hadn’t come across before because I had to affectively have two different hearing aids made into one in order to accommodate my ear. At first it was strange, I could hear everything! Things I’d never heard before. I walked back into the waiting room and I could hear people’s conversations rather than just sounds. I could hear each foot step I took and best of all I heard how truly beautiful my son’s voice really is. While I’ve always been able to hear him to an extent it’s always been a case of assuming what he’s said more sound than words. I went for a walk and I could hear on coming traffic, people’s movements. While it’s not something I’ve previously admitted, the outside world used to be daunting because I couldn’t hear fully what was going on around me so I’ve always been wary but it felt like I was stepping out into a new world. One that I was actually apart of rather than feeling withdrawn from and instantly, boosted my confidence.

I’m still waiting for my appointment to see the specialist surgeon to discuss my options but I’ve been researching different methods they use. Having numerous operations, cartilage removed from my chest and skin grafts doesn’t particularly appeal to me right now but it’ll be intreging to see what other options there are.