The journey to getting a Cochlear Implant (CI) by Eleanor

To Cochlear Implant, or not to Cochlear Implant.....


 Making the choice is the first step. Did I really want a CI? Would it actually improve my life? Would it really be worth the constant appointments? What are the chances it could go terribly wrong and I'd end up with no hearing? What about the six weeks before switch on, could I really cope with no hearing? Would I have to hide away like a hermit, frustrated at what a hearing world we live in?

(For adults, you are only allowed one CI unless you are vision impaired. You are able to wear HAs whilst waiting for the switch on. This was just my irrational thoughts.. going irrational).

 The truth is, this hearing world is not going anywhere. And my hearing isn't getting better by itself. Instead I'm often sat at the end of the day wondering where I will find the energy to listen again tomorrow. Wishing everyone would be quiet, that I could walk around the house without my hearing aids in and ignore the world.. at least for a few hours. Why does everything require listening?

 So, eventually, and I had to do it on my own, I decided to take the step and at least go for an initial consultation to see if I was actually eligible to have a CI. Some of you may know that a few years ago I went to an initial consultation and was told that my speech discrimination was too good. I was too good at finding the bits I could hear and filling in all the rest, because, basically that is what I do everyday, all day. These days, it feels such a slog. It feels different, harder somehow, but mostly it feels more frustrating.

 Today was the day of the initial consultation (for the second time) and I was sent to an audiology assessment. Basically they look for two things to see whether you 'meet the criteria' to have a CI.

 The first being that you must have a profound loss at particular frequencies (your audiologist will know more, it can also differentiate between CI centres). I already knew I met this criteria from the previous consultation and talks with my Audiologist.

The second is that your speech discrimination should be lower than 50%. If it is higher than this (which I found the first time I went) they believe that giving you a CI would not give you any more advantage than what you currently have and therefore would not be worth the risks of going through the process.
 The speech discrimination is measured by placing you in front of a speaker. The audiologist sets a tape to play, first of a male voice, who is saying sentences. You simply repeat back what you've heard, not what you've worked out. Then, a female voice plays. Then you take alternative hearing aids out. My results were pretty shocking with both ears getting just 14%, my left just 7% and my right a mere 4%. During the test I was reminded how much I hate watching the TV without subtitles. I literally get nothing and it feels like the most boring thing in the world. It's the same for pub quizzes by the way, if you happen to be reading this bruv - it's just torture.

That is basically the initial consultation. At the end of this, you are told whether, based on your results you'd be eligible for CI. The next stage is to have medical assessments and a whole host of other assessments. You can usually get all of these appointments on the same day but in this one off example, mine have been booked for different days. But, in a way I'm glad. It has given me more time to process my thoughts and look to the future. A CI isn't a cure, I know that much, but I do know it will give me a fighting chance of hearing, of letting me listen without staring intensely at your lips, without having to feel embarrassed about declining meeting up with friends because frankly I'm just too tired to look.

 There are many sides to the argument of CIs. Some believe that deafness is not an illness, that it isn't a problem to be fixed, that we should be proud of our culture. Others believe that CIs mean better access to speech, an opportunity to listen and to be heard in our predominately hearing world that we live in. As a Teacher of the Deaf myself, I completely understand both views. From a personal point of view, this is the decision I have to make for myself, that would best fit my needs. I'm glad I've waited this long because it has been my choice to make (I've had a progressive loss since the age of three) and I'm excited for what it could mean. I know there are risks of course I do, and I still have to pass all the other medical assessments and await for a group of professionals to discuss whether they want to do the operation before any of this can happen, but I'm in the journey.

I'll be going back in a few weeks for the medical assessment, the rehabilitation assessment and the objectives assessment, thankfully all on the same day... I'll be sure to fill you in on the next stage :).

We've Been Featured!

Back in early July we got an email from the lovely Editor of British Deaf News, Anna asking if we'd like to provide an interview for their August Magazine - we of course jumped up and said we would love to!

Anna came across us and found 'Deafness & Friendships' and 'Is Deafness a Disability?' interesting  and wanted to ask us a little more about them and some other burning questions they wanted to know. We of course love to spark conversation and discuss frankly all matters of our lives and Deafness as many posts of ours have displayed.

One thing I think was apparent during the writing of this interview was how different our opinion was on our 'Disability' and it's something we really love to discuss with you guys because we are different, despite being best friends we do see a variety of opinion between us (although it does have
to be known we agree on near enough everything else) and I think this made it a readable article.

I'm so proud of this and everything that we achieve, it was really great fun to write and even more exciting to see it come through the post in print! It felt very surreal seeing our photo on paper with all our words placed together. It holds a marvellous memory for us both and it wouldn't be possible without you guys reading our posts - so many heartfelt thanks!

It's holding pride of place on my new desk - I can't bring myself to pack it away yet!

What I've seen floating around by Imogene

I've recently been seeing 'Deaf' related articles/pictures pop up in all types of scenarios recently and I really like it. There's definitely that instant thought of 'Ooh, I'm one of them!' and you tune in, and they're actually pretty funny, sweet, cringy or damn right odd. (Even if sometimes they're at our expense)

I wanted to share some of the ones I've seen floating around..

What do you think of them?

Is Deafness a Disability? by Imogene

I recently read a comment on a Facebook Deafness page that I follow. People write on there very often sharing tips or asking questions related to a Deaf matter. I follow it because Els sent me a request once to read an article and I've yet to delete it.. not that I have a reason to.

I often find reading other peoples thoughts and feelings on being Deaf really interesting, it seems so many people find so many different degrees of Deafness and love sharing what it means to them. I love this, regardless of saying that I didn't like admitting I was "Deaf" but despite it, I like to know how people view themselves - I have such respect to all them that are very open and honest about their situation. It takes guts to show what can be a weakness to others (and yourself) and see it in the best possible light, it's wonderful and there's definitely something we can all learn from it.

The other day something stood out to me. It was a young girl just throwing a question out for debate and of course many had a opinion to throw in. I watched for a while seeing how this conversation was going to play out and it was really lovely to read so many genuine answers.
The question being:

I have a question, i'd like to think what you think about this question.
Definition of disabled - a physical or mental condition that limits a person's movements, senses, or activities.
So do you (deaf people) class yourself as disabled? ...
& Why do you think the answer?

No nasty comments please thank you!

by Chloe'Lian Fisher

Deafness & Friendships by Imogene

I first want to apologise as I've neglected this blog for my own family one Little and Big and this one has been on the back burner of many ovens I have to juggle.
Life is very much like that busy time when you're cooking tea and there's so much to be done, yet everything happens at once! But I'm making a mid year promise to you readers that I'm going to make more of an effort with this blog. I love this blog and I love what it stands for. I love that I can share things that I maybe wouldn't on my other blog.

I know that may seem like an odd thing to write but I'm not one to feel like I need to broadcast my Deafness and it does pop up over there occasionally but I mostly write about my every day life and the things that are important to me in that time. I write passionately about my little family and to be honest, I don't like to feel that my Deafness holds me back in any regards. (clearly does - hearing aids, hello!)

Eleanor (or El as I know her as - feels odd to call her by her proper name!) asked me the other day if I was ashamed of wearing hearing aids. I replied, ' I don't like them no' and she asked 'why not? Without them you wouldn't be able to hear.' She had a point.
But I honestly don't like wearing them. I don't like how they affect my hairstyle choice. I know it seems such a trivial matter in life but I don't like them on show and I always feel like they are. I feel I want to do plaits and them scruffy top buns - obviously I can, and I do around the house but in public I don't have the confidence to do so.
I don't like meeting new people and them finding out as it changes things so quickly. They look at your face more and over pronounce the words - they treat you like you're deaf. I hate that so much, I don't want to be treated like that, I want them to talk to me like they do other people because I usually am fine and pick it up, there's only odd parts I may miss. I'd rather play dumb and be like 'oh pardon?'.

Honestly, I'd love it if any of you feel this way, mention it in the comments :)

I'm aware that most of this is probably my own insecurities and awkwardness to the whole Deaf persona. I guess I don't like that I depend on my hearing aids, and I don't like glorifying my Deafness. I've never used it to my advantage and I've never been one to show it off. I'm a Deaf person, living in a hearing world. I'm just not.. proud to be Deaf I suppose. There's many downsides to being Deaf that I can't really see why people would be 'Deaf and Proud' and sometimes I have to be brutally honest that the Deaf community can make me feel so awkward and cringy at times. I find at times that I can't see why it's different to any other disability. People live with all types of disabilities, so I don't see why mine's an issue. God, I've probably offended you all, but hear me out. I think it's honestly amazing that people can be so positive about Deafness and are really open, share tips and attend Deaf events. It's fabulous that people can genuinely embrace it. (like El, building a signing choir! It's going places - it's amazing! I probably should give it a go at some point.) The support is amazing in the Deaf community and I find it really lovely.

But somehow, I think I find myself feeling selfish if I think on it too much, especially with a young family. I have to work through being Deaf to make me the best possible Mum and Wife I can be. I guess I ijhjust feel stupid if I mishear things, so I feel I need to keep on top. I don't feel I have time to bother. But, I know without my hearing aids, I'd be useless. Completely crap at everything but I'm glad I'm not. I do depend on my hearing aids whether I like it or not. I will always be Deaf whether I like it or not and I'll live with it as well as I have done up to now. I'm incredibly grateful that hearing aids have been made and brought out.
I'm also pretty damn lucky to have met my best friend through being Deaf as well. There's many plus's to being Deaf as I can take my hearing aids out and sleep in silence (that has got to be the best thing right?!) and I've made some of my best friendships through it.
I guess I've probably just got to get over it and why should I hide it? There's nothing wrong with it. It's all me isn't it? This post probably doesn't make that much sense as I totally contradicted myself in most ways - but I'm sure we've been on that route to self acceptance.
Maybe I have, maybe I haven't.

I'd love you to share your thoughts with me x