Monday, 28 May 2018

Dear My World by Eleanor

At the weekend I went to a talk about 'd/deaf writes back' featuring the inspirational Joyce, a deaf children's author and Raymond, a deaf poet. I was also lucky enough to chat with them afterwards in the delightful beer garden set up in Chapelfield Gardens as part of the Norfolk and Norwich Festival. 

 Joyce admitted herself that she did not know many deaf people and was inspired by the day. We all sat together in the tranquility of the beer garden, sharing stories and difficulties of being deaf. After a while Joyce said 'its just so nice to feel normal, I don't feel that very often'. 

 But what is normal? A while ago I was teaching deaf studies to a group of year 3-6s, we were gathered in our usual set up, the children in a horseshoe format with my interpreter behind them ready to plug in the gaps so I could then rephrase or repeat anything that needed it. The topic had gotten onto what does 'deaf' mean and one of the girls pointed at all of us and said 'we are deaf' and pointed to the interpreter behind her 'she is normal'. This made me sad. I instantly responded with "Normal? What's that? Nobody is normal. She is hearing yes, she can hear, her ears work which makes her different but we are all different. None of us are normal, that doesn't exist." I'd hoped by saying this she would start to break the barriers already taking place in her mind 'us' and 'them'. 

 Many deaf people refer to the world as a hearing world and a deaf world and many of them tell me they don't fit in either. As someone who has grown up in a hearing family, I too have gone through the motions. 'It's not fair, we are dominated by hearing' (but what do you expect when we are such a small minority) 'why do deaf people have to work twice as hard to learn speech just to fit in?' 'the deaf community rejected me because I can't sign very well'. Believe me, I have felt angry at the world, angry at the situations I find myself in everyday. But then, something happened, I'm not quite sure when or how, I don't think I even realised until I listened to Raymond speak, but I let go. I let go of the idea of a deaf world, a hearing world. I said goodbye to the anger, the resentment, the injustice inside me and I opened my eyes.

 I took a look at the world around me. I looked at the hearing world that deaf people are so desperate to fit into. I saw the groups of people, the ones with accents, the ones that speak slang, the ones that reject others if they don't fit in, if they don't talk the same way or look a certain way. I saw the groups of people that I had absolutely nothing in common with and I saw my frustration seep out of me, the pent up anger at not knowing what they're talking about, not being able to hear them and realising that I wouldn't be interested anyway. The years of straining to hear conversations and realising I'm not interested but not being able to leave because so much time and energy has already gone on. Desperate to feel wanted and being accepted was usually enough to keep me hanging. I'm not saying the deaf world is any better. There are groups of people in the deaf world who do the same, if you don't sign a certain way or be a certain person you can feel yourself on the outside looking in. 

That's when I saw it. The barriers disappeared, faded into the distance and I saw MY world. The world that I created. The friends that I have selected, some deaf, some hearing. The places I go when I feel alone. The happiness I feel when I'm with them. Some sign, some speak. I make the effort for those I'm interested in, and they do for me. My world isn't very big and it's probably very selective but it's mine. When I heard Raymond read his poem, I sensed so much turmoil, so much anger inside him that I used to feel also. Anger at feeling different, not feeling accepted in either worlds. It gives him fuel for his writing, his raw, painful writing that gave me goosebumps when I heard him speak. His fantastic writing that I hope people can read and learn from. Towards the end of the talk I felt myself taking a step back from the situation and feeling a sense of sadness. It has taken me 28 years to get to this place where worlds no longer exist for me, but for many of the children and adults I see they still exist in their minds. I believe there is a strong correlation between deafness and poor mental health. I never ever used to consider my deafness as a disability until my work as a teacher of the deaf but legally it is because it potentially hinders our ability to communicate. I say potentially because it is very much dependent on other people's perspectives. If others don't believe in us of course we won't do well but isn't that typical of anyone? Hearing or deaf, blind or learning difficulties? For any type of disability? I'm not just talking about verbal communication but any type of communication, whether it's through sign language, body language, gestures or even the powerful medium of writing. 

It's time to let go and make your own world. Be who you are, find the people that won't settle for anything less than you. Be inspirational, don't be angry, it's just wasted energy that only hurts you in the long run. You are amazing.

Thank you world.

Sunday, 31 December 2017

The Cochlear Implant Journey 2017

It's officially the last day of 2017. What a year it has been.

On the 14th November 2016 I went for surgery for a Cochlear Implant. On the 16th February 2017 I was activated and became a Unilateral Cochlear Implant user. It was a really hard few months I have to be honest and it wasn't until 3 months later that speech actually made sense. Everyone has their own journey to take when undergoing Cochlear Implantation, for some it may be instant (this generally tends to be adults who had hearing beforehand), yet for others take months or even years.

One thing I found that really helped me when I was struggling was NOT to look at social media. NOT to google how long it takes to hear again because you will come across success stories that make you feel stupid. You must remember, everyone is individual, our brains are individual and we do not have remote controls to adjust our understanding of sound. That is what it comes down to at the end of the day, your own interpretation of the sound and how your brain makes sense of that. There is no right or wrong, there is only you, your Cochlear Implant and you.

 It takes a lot of work. It isn't easy. There aren't any shortcuts either (trust me, I looked). But I can tell you 100% that it is worth it.

 In August 2017 I became Bimodal, wearing a hearing aid in the left ear and a speech processor (the external part of the Cochlear Implant) on the right. This was another journey which also required more work. Some have told me it was easy, put it on and go, others have said they hate it and refuse to wear the hearing aid, finding they get by with just one speech processor. I let it all get to me. I wasn't clever enough or fast enough. But does it really matter how fast or slow you are? All that really matters that you reach your final destination. I have to say though, I don't believe there really is a final destination with Cochlear Implants. What exactly are you aiming for? To hear like a hearing person? Then you're looking in the wrong place.  However, if you're looking for a chance to access sound and speech then you're in the right zone.

On the 31st December, I am sat here reflecting on the year of my Cochlear Implant. I went for a run this morning and I ran past a gentleman who kept a steady pace throughout. It took me a few kilometers to realise he was keeping up with me. I wondered how I did not know this, surely I would be able to hear his footsteps or his breathing. I concentrated, listening hard and I could hear something. I couldn't tell you exactly what it was, whether it was his breathing, the paper number cards pinned to his t-shirt rustling in the wind or perhaps it was neither, perhaps it was a bird. The point is that 10 months later I'm still learning more everyday. I don't aspire to be a hearing person, that would be silly but I do aspire to hear things that enhance my life. I went to see the Phantom of the Opera a few weeks ago and I could hear the different parts of the music, I could pick out that someone was singing. The first few seconds of the play I could even tell what the actors were saying without having to read the captions because it was a familiar context and situation.

Predictably is half of listening (maybe more, maybe less, I'm not sure on the specific percentage) but this is still something I get caught up on. I hear, or at least I think I hear the main point, some other parts of the sentence, whack them all together, think of an appropriate response and hey presto I sounded really intelligent there. I've got it wrong. I still get it wrong. But hearing people do just the same. Listening all the time is hard work. Even hearing people get tired (shock horror) and I think sometimes deaf people forget that. I know I do. Perhaps that should be a new years resolution for me, to consider hearing people more.

I will end this blog with my top three reasons of why I do not aspire to be a hearing person and I'm sure some of you will agree with me on some of these points...

1. I get to sleep in complete silence. Those poor hearing people that are kept awake by every little noise or snoring...
2. There would be no funny misheard quotes. My brother asked me what I thought he would be best at: tiddly winks, farming or vegetable throwing. I of course immediately responded with vegetable throwing but it turns out he said vegetable growing..
3. Being hearing would mean I would not have met any of the amazing deaf people that I know. Your abilities continue to astound and amaze me everyday. You are all amazing.


Have a wonderful night tonight, enjoy the last day of 2017 and I hope 2018 brings you everything you want. If you are on the route to a Cochlear Implant then hang in there, it'll be worth it. I hope my journey has helped inspire you or at the very least reassured you that you are not alone.

As for me, I'm on the list for a hearing dog and I've got my fingers and toes crossed that my 2018 will be the year of the dog.

Wednesday, 25 October 2017

Becoming Bimodal. The CI Journey continues.


What is Bimodal I hear you ask?

 Bimodal is using two different modes. In my case I am now using a Cochlear Implant and a Hearing Aid to hear, two very different bits of equipment. This means I am now 'Bimodal' *Yay*

About a month ago I was invited to get my 'Naida Link' Hearing Aid from the Audiologist, a hearing aid that has been especially designed by Advanced Bionics (the clever makers of my Naida Q90 Cochlear Implant Processor) in collaboration with Phonak (the clever makers of the Natho hearing aids that I was wearing previously). Although this had always been the plan all along, to become bimodal, I was nervous about this next step for various reasons:

 1. After 23 (I was three when I started wearing them) years of wearing ear moulds, I relished not having to wear anything in my ears. I was loving it! With just one CI on my right side which does not need ear moulds, I felt light, as if there was nothing in or on my ears. The sensation of the wind blowing felt strange at first but I found something about it so comforting. I didn't want to give it up so soon.

 2. When I was first activated in February, my brain was overwhelmed and it impacted upon my work and my health. Was this going to be yet another huge hurdle to overcome? I still felt like a newbie at work, always three steps behind everyone else. Was this going to be another step back?

 3. What if I didn't like it? What if it was a huge let down after all the anticipation? What if, having finally gotten used to the sounds of the Cochlear Implant, my brain would give up on all that I had learnt, ignore the new frequencies that I could now hear, the 's' sounds that people always seem to add to their words that never used to be there before, and simply reset to factory settings? The old reliable hearing aid that at least provided me with the low frequencies, just enough to get by with the nod and smile.

All at once it was time for the appointment. In theory, it was a long wait but at that time it felt barely long enough. The appointment was short, just an hour for mapping. I was given a choice of colours but I felt compelled to take the same colour as my processor (sandy beige), even if the silver did take my eye. The hearing aid was programmed based on my Audiogram, a click of a button. I wasn't even sure I'd remember how to put it on after all this time, but I did.

 "How does it sound?" A question I always dread. I never know what to say nor find the right words. It sounded squeaky and surreal. Like voices didn't match the pattern of lips again. I wasn't actually disappointed, I was expecting another adjustment period but it was frustrating that lipreading would be difficult again. The Audiologist really helped though. She put absolutely no pressure on it at all. She said I should take my time with it, maybe wear it an hour a day to build it up and go from there. She even asked if I wanted to take it off for the journey home. I declined, I knew I had a long way to go and I was determined to start right there. The low frequencies from the hearing aid combined with the high frequencies of the processor meant that voices went up and down, like a mix match of sounds, squeaky. My voice sounded much deeper than I expected and very  metallic. It felt like having just been activated again, when voices had lost their natural touch that I'd spent months on identifying. I reminded myself, again and again, it won't always be like this, my brain just needs time.

 And I was right. Although I have to admit the first week after the appointment I had been swamped at work and didn't have much motivation or energy to wear it in the evenings but I did try an hour here and there when I remembered. About two weeks later I wore it for a whole evening and I decided to take the plunge and wore it for the next day at work, and then the next and the next. Within a few days of wearing it all day, it all began to sound natural again but with the added bonus of lower frequency sounds. Men sounded like men and women, although some still squeak, began to sound clearer, as if being Bimodal added clarity. Sounds were no longer always happening on the right side (CI side) of my head, they were sometimes happening on my left (HA side).

The first time I did a Parkrun with Bimodal hearing, two ladies were talking to each other as they ran past my left side and I remember turning to them and thinking, its been a long time since I've heard anyone on that side. Don't get me wrong, I'm still terrible at localisation but now I have a fighting chance. One of the benefits of wearing the Advanced Bionics CI and HA duo is that they are programmed to work together. They have different programmes depending on what functions you'd like, for example, music, focus (good in small groups) and also the option to stream all the sound into one side. I'm still playing around with all of the functions and I've still got lots to learn but isn't technology just amazing?

 I've now been activated for 8 months and Bimodal for 1. I recently went back to the hospital for a check up and to assess how well I am hearing with them. These are my results of the speech test whereby sentences were read out and I had to repeat what I had heard.

In Quiet
Hearing Aid Only          18%
Cochlear Implant Only  94%
CI + HA                         94%

In Noise
CI Only                          44%
CI + HA                         76%

When it is quiet the Hearing Aid doesn't provide much support, yet when it is noisy it really begins kicks in. For example previously when I am in noisy situations e.g. the staff room and I am trying to have conversation with just one person I found it really difficult with just my CI on. Now it feels slightly easier but I still get distracted easily. I now have the hearing aid of an 8 month old so, really it is understandable that I get distracted by shiny things and in particular things that crinkle and scrape (ouch!).

 For those of you who are unsure about getting a Cochlear Implant or becoming Bimodal, I'd just like to say, I understand. I've been there, arguing with myself about it, worrying about all the potential outcomes, but ultimately, it is your decision. Whatever you decide, embrace it.

 I took the journey, I have no regrets and I'm never looking back.