Tag Archives: cochlear implant

Unmasked

Since I regained my hearing, non-signing hearing people have opened up to me, and there has been a lot of new bonding with people, some of whom I barely know. It is quite intense, the increase in human intimacy. And I have to admit, I’m fearful of it.

Previously I was only regularly intimate with a handful of people. This includes people who can sign, such as my deaf mum, deaf sister, and my hearing husband and friends who I persevered with, and who persevered with me.

Back in the days when I had real hearing, I’d could share and receive personal intimacy verbally. When I was deaf I was intimate by email with some friends, or else some people would sign.

When I talk about intimacy here, I don’t mean sex. I define intimacy as sharing deeply personal details, and being trusting. It’s something that involves social risk and vulnerability. Intimacy happens in an unplanned way, and can occur suddenly in a conversation that begins with quite mundane topics.

Hearing people can fear intimacy too. Maybe that’s why the scripted environments of global branded shops and services are so successful. The arse-clenching gamble and potential humiliation we fear in face to face social interaction and consumer activities is something that branded chains of shops, cafes, gyms are geared towards removing. You pays your money; you accept the downside of global, high street uniformity and soulless, formulaic, professionalised service as a fair trade for the warm and comfortable predictability that does not unsettle the wounded depths/ shallows of your soul/ego.

However, for me, the predictable comfort of branded chain formulas was in fact uncomfortable. The consumerist exchange dialogue was something I had to learn through a process of awkward repetition. The chain outlet patter differed from brand to brand, the “do you have a loyalty card”,” a nectar card”, “do you want a bag?” “Do you want milk?” “Do you want ice” “do you want a school token” “do you want a blah?” “blah blah?” and “Blah blah bla – “I said have a nice day!” Sometimes I’d just hedge my bets and say no. It wasn’t always the right answer.

If they had to repeat something like “have a nice day”, their face would betray they were repeating a really obvious and mundane, scripted comment.

So if intimacy was tricky, the consumer antidotes to the time consuming risks of intimacy were also a headache for me.

On the rare occasions a waiter or shop assistant would sign “thank you”, I’d either blank it before I realised what had happened, or else feel an urge to lunge over the counter and give them a hug.

In my social life, when I was going deaf, I initially liked to butterfly and bluff. Then when that became untenable I had to learn how to enjoy my own company. I also acquired excellent deaf friends and used internet social networks.

After my implant switch on, I regained most of my long lost hearing and learnt new things about old hearing friends. And about my family, some of whom I barely knew. I heard how some people in my family really sounded for the first time. Everyone was and is happy, including me.

But the increase and expansion – the explosion – of intimacy to include people I don’t know well (including family), feel unexpectedly disturbing. I like it, I know it’s good for me, but it is simultaneously unsettling.

I sometimes feel inadequate and unprepared. I sometimes want to cringe. What’s wrong with me?

I panic inwardly, this will all end in tears, it surely must. I’M A DEAF PERSON GET ME OUT OF HERE THE HEARING PEOPLE ARE COVERING MY FACE WITH PERSONAL DETAIL SPIDERS.

Some residual warning is triggered in me. I’m filled with a sense of dread. What’s the worst that could happen? My neural pathways must be hardwired to get out of conversations as soon as possible, to avoid lipreading fatigue maybe? It’s a redundant dread these days, because I don’t always have to lipread. I no longer get tired from following speech.

It feels like quite a responsibility to listen to all the personal details that people share as a matter of course, as a way of human bonding. I’m fearful I might make a mistake, or not listen with the right sort of facial expression. Because humans give so much away in their face and eyes.

So, it feels hard to let my guard down on such a regular and spontaneous basis. Or I forget to do it. I’m not sure how much I’m allowed to talk. I’m not sure how much other people are allowed to talk. Are you allowed to stop them? Sometimes I don’t talk at all and I can feel myself disappearing, and so sometimes I jump in too much.

I’m surrounded by lovely people overjoyed to be able to make contact at last, now I’m returned to the hearing fold. But as I said, sometimes my neural pathways are on high alert, as though my brain’s old department for deaf and hearing world relations is desperately trying to justify its continued existence.

I went to an East German castle once, about six months after the Berlin Wall came down. The communist soldiers stood around over armed, under used, having a fag, cluttering up the pretty gardens.

Maybe some of my sense of dread is a left over default mode. If a police force or army isn’t needed, it tries to invent scary sounding threats to justify continued state funding. My metaphors are a bit jumbled here but it’s like I’ve got some left over defensiveness clattering around my psyche.

I’m like a neurotic rescue dog and my family and friends have some serious patting to do before I come out from under the armchair where I’m growling and chewing my special bone that is no one else’s but MINE and if they carry on patting me I will go a bit bitey and everyone will see how bad I am and the hospital will have to take my implant away and I will be deaf again.

There is also another, maybe sour and almost bitter thing going on – another unhelpful thought I have to bat off during some conversations.

If someone says “It’s so good to be able to finally speak” I agree, because it is. It feels good. But at the same time my internal defence force wants to step in and protect me – as if to say, “They couldn’t be bothered to talk to you properly before so why should you bother listening now?

I mean, they’ve just said that they gave up on you. That you made them feel sad, it was sad to be with you. What gives them the right to deserve to enjoy the benefits of your new hearing?”

But in a more positive light, the feeling is bittersweet I guess. Or a happy ending clouded with unnecessary dread, or some kind of imposter complex. Occasionally when I’m besieged with candid personal information I feel like a fraud. How can you trust me with all this stuff? I’m not one of you. I’m only just back from the Deaf Wars and I’m not what you think!

And then I remember that I also played a big part in being a stranger to people. For example, sometimes people would ask me “how are you?” and I’d reply at length, they’d listen politely and then I wouldn’t return the favour, or else not be able to hear a reply.

Is my fear of intimacy caused by my deafness? Or was it already there, and allowed to flourish unchecked when I went deaf? Did it become a useful tool that also served to alienate me from potential intimates? Did my fear of intimacy spread like a rash to all my relationships as I went into shutdown? I remember being open. I certainly share fewer details about myself than in my 20s. Maybe that’s part of being grown up and polite. I haven’t been switched on long enough to find out.

All through my 20s I told people my hearing wasn’t getting worse, even though everyone could see it was. The destruction wreaked by years of denial took their toll and I fell into a depressed fug one summer. The reality hit me.  I told one friend I couldn’t remember how to do my personality anymore. Friends organised a 28th birthday party for me. Everyone came. They made a cake. They cared a lot. They were amazing. But I knew these days were numbered.

I didn’t get organised about my hearing loss until my 30s. But getting professional help was, ironically, an invasion of privacy. It is an oddly intimate relationship. Looking at one face all day, often a stranger’s. Some hearing colleagues very occasionally commented, that it put a wall up between me and them. When they talked, I was looking at my interpreters face or a laptop screen. “It feels weird to communicate with you through someone else”.  I’d think, ‘that’s your best bet, so deal with it’. But I suppose, my averted eyes for many people, might appear an act of passive aggression, a rejection of intimacy and human bonding.  Actually, it does feel a pretty safe place, watching an interpreter or a screen and using the time delay to make considered responses. But these highly trained professionals allowed me to be more part of the world, and closer to people, not less so – at least at work.

So I let total strangers into my strange career. Fortunately it was usually a positive experience, so long as I stuck to the rules of engagement – booking preferred interpreter enough in advance, sending out briefs, scripts, notes, employing co-worker interpreters for longer shifts, arranging enough rest breaks, informing colleagues on how to work with an interpreter and so on, so long as I did all that, my support workers enjoyed working with me. They often enjoyed it even when I didn’t!  I had a real person, with me, all the time on most jobs. Can you imagine?

After a few newbie hiccups in 2005, I learnt how to work with interpreters, my sign language got better, I learnt the rules so I could make sure I wasn’t abusing my staff, not breaking their hands and minds – because terping is tiring and brain cell-destroying like lipreading. This was the new me. The organised me. Spontaneity was better if it was pre-arranged. I settled into my new shell. But the interpreters didn’t become very close friends. I wasn’t that type of deaf person. I wasn’t that type of person. I had boundaries.

So anyway – this fear of intimacy issue I’ve been noticing. I know this sort of fear can be due to childhood trauma. A therapist – if I’d ever been able to follow one – might have said something about my parents splitting up when I was six, that sort of thing. It is possible it was always there. and I was in denial about that too.  Bloody hell. where does it end, you know?

Although losing hearing is widely known to result in people becoming withdrawn. It’s very important to point out that this is probably just me that became more fearful of intimacy at the same time as going deaf. Not all deaf people will be blundering around in the world with the emotionally repressed social skills of an Old Etonian. It’s just me okay? There are plenty of magnificently warm and generous deaf and Deaf people around who will warm the cockles of your heart.

And it’s important to note that I probably don’t usually come across to others as very intimacy phobic. I worry that some people confuse my self-protectiveness – or whatever – for what they call ‘cool’. I’ve been accused of being cool in the past. Well sod that.  At the heart of every cool dude is an anxious individual too scared to love.

Writing this reminds me of a conversation a friend relayed to me (after the fact) about 18 years ago.

Friend A: Why do you like Sophie?

Friend B: Well because, well, essentially she’s an enigma.

Friend A: She’s not an enigma! She’s just deaf!

I was still hard of hearing back then. And I’m not sure if friend A definitely used the word ‘just’.

But anyhow, on reflection, maybe there was a grain of truth in these flattering remarks– although maybe not for the reasons Friend A meant.

Friend B also once told me, that in genetics, that it is difficult to tell the function of anything until it malfunctions. So if you want to understand an enigma, you must first see it malfunction – e.g. through a mutation.

My deafness is due to a genetic mutation. What does that mean for my understanding of my function? I’m not a gene, I’m a person, obviously; but why not try and Dawkins this up a bit?

Crudely speaking, did going deaf allow me to understand my function? Did my hearing loss cause me to malfunction and therefore understand my function?

As my hearing regains its function, what function does my deafness have?

Against nature, against genetics, I feel like the excision of my deafness – for argument’s sake let’s call the hearing loss the malfunction – although I didn’t consider it as such, deaf and proud and all that –I feel like that reversal of the “malfunction”, to make my auditory nerve re-function – this miracle Is allowing me to unravel the enigma that is myself.

And sometimes, not always, thanks to the easy access to intimacy with the hearing people in my life, it feels like the re-functioning of my hearing unmasks me. And I feel shame. It unmasks me to others. It unmasks me to myself.

But this is okay. It’s not a down side. It’s all A okay.

Access to racism and sexism

Its five months since my cochlear implant was activated. I’m bowled over at how being “hearing” again has expanded my potential as a moral agent in the world. By which I mean – I have better, instantaneous,  access to spoken information which enables me to make my own decisions based on notions of right or wrong.

That isn’t to say that as a deafened person that I didn’t have moral agency. But it feels like I’m having to make more moral choices or that I’m coming up against a wider range of moral dilemmas more often.

To give a couple of the most obvious examples:

  1. I now have regular access to racism. Before I had to struggle to get access to people’s racism, and even then I wasn’t sure if I hadn’t just ‘got the wrong end of the stick’. But now I can hear people’s spoken streams of consciousness, I can join up the dots, and sometimes it’s just blatant. The culprits probably don’t think of it as racism, but I sure as hell do.
  2. With my CI I have full access to sexism. I’d also presumed in recent years (coinciding with me reaching the  profound and total deafness threshold)  that my married status had cloaked me with a sort of ‘off limits’ respectability. Something about me had altered to deflect unsolicited sexual advances (and don’t get too excited because I’m mainly talking about drunk tramps or workmen shouting “Alwight darling?” or drunk men scatter gunning inaccurate compliments at exhibition launches: “You look like Sophia Loren”.)

However I now realise my hearing loss had been protecting me from this sort of thing. The only shouting I heard on the streets when I passed through some sort of indefinable ‘atmosphere’ was that of what I assumed was my own clamouring paranoia.

The usual shouted or mumbled ‘compliment’ isn’t something that people want to repeat, especially not five times and then have to rephrase it. Looking back, maybe all those times I’d ended up cornered at parties, answering questions about why British Sign Language isn’t international and so on, maybe that conversation had started off with a wholly different topic:

e.g. “You look like Blah bluh bloh”

“Pardon?”.

“Nothing…I mean…what sort of music do you like?”

“I’m deaf I have to lipread you.”

“Really? My cousin is deaf. She signs, I don’t sign, do you sign? It’s a beautiful language I’ve always wanted to learn to sign”

“You can learn at your local college if you google BSL Level 1 class”

“Is sign language international?”

“No”

“No?! But that’s mad. It should be international”

“It’s not international, every country has its own sign languages and dialects, like spoken languages do.”

“They should make it international”

By the by, I’ve written a similar vein of dialogue in a new play script I’m working on. “Is sign language international?” is a very imperialist question don’t you think?

What if you applied the same logic to other, spoken languages?

“You speak English? Wow. I’ve always wanted to learn English. They should make it international.”

“They did”.

Or how about:

“Wow German, is it international? No? Why not? It should be international. So should Mandarin, they should totally make Mandarin international. Crazy not to”.

Or how about,

“Is Esperanto international?”

“Yes”

“Great, I will learn Esperanto, that will be really useful.”

Anyway, hopefully the above digressive rant should iron out any confusion on this question for all time. Oh hold on…

Back to my earlier point…It had been so long since I had to react to anything more than my husband dutifully telling me I looked beautiful or a friend telling me I looked well, that the surprise of hearing random chripses from strange men leaves me cringing inside. But maybe that’s a reasonably blanket reaction – whether you’re a cyborg or not.

The first time I heard a tramp shout out to me in Victoria Park in London, I thought maybe my CI was making it up. Then a week or so later, in Leytonstone, a mechanic on a tea break did a shout out as I walked past the garage.  Clearly my CI wasn’t making stuff up. I was so surprised I said, ‘hi’ as I walked on. I felt foolish, then thought -‘ ha! back in the game, what!’, then ‘no, that’s not what I’m after’.

Now when I come face to face with any cringe worthy sexism, I think this – if only I hadn’t spent so many years with de facto immunity to this sort of thing, maybe I’d have thought up some good comeback deflector lines to ensure that I’m not bolstering the imperialist, white supremacist capitalist patriarchy by cringing and smiling with embarrassment like a simpering drip.

This is what I mean when I say my moral agency has altered. I can be clearer now that something wrong – or right –  has happened. Or I can investigate things more easily if I think something needs sorting out or better understanding.

Going already

As a deaf person my everyday moral agency often became focused on issues relating to my deafness. My main aim in many of the social arenas was to get out of situations as soon as was politely possible because it was hard, because the noise was horrible, because I was wasting my time etc etc. I had to get out quick before I got to the point where I’d have to spend a while getting over the depressing fact of my inability to understand the spoken form of that beautiful and very international language of English.

I’m trying to explain the before and after CI difference. I’ll be honest; pre-implant it was in some respects “easy” to float around not becoming too involved. It was easier to butterfly than to engage with people in depth. It was easier to talk about myself and maybe get the bare basics from others. There was little investment required other than the immensely fatiguing skill of lipreading – a massive brain killer. There was no way I could understand a load of spontaneous, racist or sexist information and then react to that in a way that I’d feel comfortable with. To me, the world presented as  anti-deaf, but it rarely revealed itself as racist or sexist in the verbal sense – although I could certainly see structural racism and sexism.

Racist tourist information

On holiday in South Africa last month, I was treated to a few instances of racism in guest houses. We were advised to avoid bathing on such a beach or lake on the bank holidays because “it will be full of coloureds drinking” or “it will be packed with blacks drinking”.

Wow. Having missed the opportunity to question such a comment last time round, the second time I asked, “What will happen if we go to the beach?”

“You will have an experience and you mustn’t go. You’re just not in the right bracket. I can see you’re doing a face like you’re thinking I’m wrong but the beach is a no go area on New Year’s Day for people in your bracket”.

Beach army

That particular beach felt rather militarized, with camouflage uniformed security guys riding around the sand on quad bikes (we saw one guy being “arrested”),  and searching cars for illegal beach booze. The only thing that we saw drink-wise was black families filling bottles with sea water and sand which they took home to drink and vomit up as a detox cleanser. I never heard of this before but found out it is common.

Pre-cochlear implant I had a preference direct information rather than vague, manipulative sentences that imply things. Quasi diplomatic beating around the bush was annoyingly confusing. I suppose if I’d visited this guest house when I was deaf and been told not to go to the beach because I was in the wrong –

“What – wrong what? Black people doing what? What black people? A lot of them?  A lot of black people – where? On the beach? Oh, great – not great? Why? Oh, drinking, No I won’t be drinking on the beach, what? …”

… I indeed might have been confused by the vague reply, by the implied racism in the words ‘having an experience’ and  ‘wrong bracket’. I wouldn’t have understood the word bracket at all – too weird and random. In fact the word bracket would not have have come up as I wouldn’t have asked her a question.  I might have noticed odd body language and the guest house manager’s pointed – we both know this is the REAL truth – facial expression, but been unaware of  the tone of voice that assumed that I too would be frightened by the thought of being in the minority on a beach, race and class-wise. Worse still, I might have nodded and smiled! I might have smiled and nodded at racism by mistake.

After the manager had gone away I might have consulted my husband, who would have said, “She said we shouldn’t go to the beach as it would be crowded with black people. She was being racist”. If my husband didn’t give me that information (and there is no way I think he would have been able to interpret it to me at the time), my moral agency as such (deciding whether to avoid a place on the grounds of irrational racial prejudice) would have been delegated to him. Alternatively I’d have just decided to go to the beach with a vague sense of unease that the guest house owner had told me something negative about the beach which I didn’t fully understand. Or if I hadn’t understood her at all I’d have gone to the beach in blissful ignorance.

In truth what usually happened on past holidays is that when my husband and I arrived at guest houses was that the manager would chat for what seemed an eternity to Tom, whilst I waited. Whilst I looked at things and tried not to look rude or too mouse-like. At the end of the spiel Tom and the guest house owner would turn to me and ask, “Any questions?” And I’d try and think of a question, which would then usually turn out to have been already answered.

Not all South African guest house owners give racist tourist advice, but I suspect a good few do. What is disturbing is that they should believe that this advice is not only necessary but welcomed. The assumption and maybe the truth is that many white tourists expect and welcome this sort of advice. “Do check out the local Boer War museum, don’t go swimming in the beauty spot, it’s full of blacks”. Shame, as they say in South Africa.

Racism and ropey chat up lines aren’t the only area where I find myself less impervious. Racists and sexists excluded, the fact that I can get to know hearing people more deeply, quickly, means that I make more decisions based on knowing or on trying to find out what the other person’s needs are – rather than acting in a self-protective way – as I say – getting out of there (wherever) as fast as I politely – or as I often feared – rudely could.

All these parenthesis and awkward brackets I’m bombarding you with – I hope – give you a sense of the sense I have of ploughing a long neglected field. I have to keep stopping and working on stuff. Some sort of analogy like that.  I used to over think things when I didn’t have enough information but now I have the information –well! I have a lot more to chew on.

This moral agency idea might seem a really dodgy thing to say, as though deaf people are not capable of it- which isn’t the case. After all, information comes in many forms not just spoken. Deaf people can consult multiple written and visual sources. But I do find I’m now getting more information from and about people than before – through speech.

Pre-implant, I sometimes intuited that something was up, felt a sneaking sense of unease. I’m now finding out I wasn’t paranoid, I wasn’t having an overactive imagination. It’s great. I generally have less anxiety, less of a sense of powerlessness, and this has a noticeable effect on my physical well-being.

When I was first switched on I said was glad to be able to hear the barrage of information humans excrete in abundance. Friends said – “People talk a lot of shit don’t they! Isn’t it boring!”  World weary hearing people do believe there are some things you’re better off not having to hear.

It can indeed be irritating and annoying listening to some of the infernal human guff,  but I stand by my previously stated belief that there is a lot of information, it comes at speed and it is – well maybe not pertinent – but it feels crucial that I know where other people are coming from, morally, psychologically and philosophically.

Interpreter moral agency interlude

As I mentioned before, I did have access to spoken information via interpreters, pre-implant,  but people often behave differently in informal settings and so perhaps aren’t as candid at work.

And the presence of an interpreter often makes people say out loud “Don’t interpret that!” There is an element of increased self-consciousness, self-awareness and self -editing when I’m visibly deaf due to an interpreter at my side.

I have worked with some excellent interpreters who labour to provide social interpreting at work as they know how crucial this is to advance one’s career. I’m thankful for this for providing a world where I had more power than I did socially. But I’m not going to digress at length about interpretation here.

My CI identity is still under construction and I’ve been  using – on a default setting –  the dusty remnants of my hearing youth, recently rescued from a box in the attic – I’m picking up from the early twenties me  who sometimes did, sometimes  didn’t have a quick  comeback when people said something ‘out of order’. Back then I had a gang of friends with enough wits and self-respect to go round, and we inspired, disagreed with and stuck up for each other.

These days I suppose my peers are probably under pressure from much more convoluted and weighty moral concerns than some bloke shouting ‘phwoar’ in the street. I feel like I have a lot of catching up to do, because I didn’t have all this information before, or I was caught up in fighting to get information all the time, or giving up and delegating.

The main skill I’m trying to improve now beyond actual hearing is of truly listening and absorbing. Maybe deafness helped me with that. But not always.

Maybe I don’t always need to react right away. People want to be listened to, which I already knew but frequently – still –  forget and interrupt. People want to tell their stories. And I might not like what I hear.

But I believe the increase in directly understood information has made me more powerful, independent and secure.  With a bit more practise, and armed with my deaf experience and new hearing, I will be taking no prisoners.

Hearing rehabilitation – week 3

6 September 2013
I’ve been switched on for 17 days.   Last Thursday I went to Book Slam, to test my cochlear implant with some literary readings. I went with low expectations and high hopes. I’m finding that is the best way to proceed with hearing rehabilitation. “I’m going to do something difficult; it’ll be rubbish or brilliant”. Not that Book Slam is rubbish. Plus they always booked a sign language interpreter for me when I went down, which is brilliant. This time I asked them to not book a terp. The compere started talking. I braced myself for that sinking feeling I always get at readings. Of wanting to escape the horrible bluh bluh bluh noise. But I was amazed to be able to follow some sentences by the poets and comedians, even though I was still trying to lipread them around the mic. But although I could follow bits, I couldn’t follow the whole. Maybe it will improve with practise. I don’t see why not. Thabo and the Real Deal also played at Book Slam. There was a keyboard, an acoustic guitar, a vocalist, a drummer. It sounded good! How could this be? A cochlear implant surgeon said in a TED talk that CI users cannot enjoy music. He insisted that music as heard through a CI is not beautiful. That talk was delivered in 2011. I wonder if the CIs are better at music than in 2011?  He said the brains of CI users brains cannot experience pleasure at music. But I definitely did. My brain had a big music happy party. So he’s probably wrong. The music didn’t sound off key. It sounded pretty much how it should sound, even the vocals. I couldn’t follow the lyrics though. Back on my old laptop, Amy Winehouse still sounds like a smurf. Some music sounds bad but some good.  Technical interlude On Friday I had my hearing rehab and tuning at the hospital. The speech and language therapist  said “I want you to know that you are doing very well, you have progressed extremely rapidly and after 10 days you’re at the stage people would normally be at after 6 weeks.” Next the audiologist upped my volume levels across the 16 electrodes. She decided to keep electrode 16 switched off because when she played the sounds (highest frequencies) at a loud enough level, I felt a buzzy feeling in my head, sort of around the edge and at the top. This means that electrode 16, the outer one on the array, is partly external to the cochlear. It’s not a surgical mistake, it’s just that the electrodes are very long and this sometimes happens. Before surgery I was very worried that I would have to have some of the electrodes switched off for this reason, (I read that deafened Americian radio shock jock Rush Limbaugh had some of his CI electrodes turned off because they were shocking him – making his face twitch). But the audiologist reassured me that the high frequencies represented by electrode 16 would now be channelled by another electrode instead, so I don’t lose out with it being turned off. So I think even if there is that side effect, and even if some channels are switched off – it’s fine. I feel fine. The volume is set at the right level now. The audiologist added the 5 programs, clearvoice (for speech) ultra zoom (for hearing one person’s speech in a crowd), general noise (good for listening to traffic), ‘T’ switch (for theatre, cinema and TV with a loop) and back-up mic program in case of t-mic failure. Then the appointment took an unexpected turn. I had an old school audiogram test. This detested test involves sitting in a dungeon with headphones, pressing a clicker as soon as I hear a stupid boingy noise. Afterwards the audiologist asked me in a suspenseful way how I thought I was hearing now. She looked excited. I said I was heard of hearing now. She showed me the old graph, where on the right ear (the lower line on the attached photo) I was profoundly deaf in some frequencies and totally deaf in others. She said normal hearing is 20db and above. She showed me the new graph, an almost straight line through 25db with a dip to 30 db at one point. She said “You have just below normal hearing now and I expect you to improve on that test in two weeks’ time.” I have to confess that cried slightly, and said thank you, as though I’d just got through to the next round on X Factor. Then remembered I had to go to an audition straight after the appointment so pulled myself together. I had to sit with a strong cup of tea in the hospital for a bit. I was overwhelmed.  I wanted Thomas to be there. Just someone to sit open mouthed with. I wasn’t expecting the appointment to be like this. It’s still very difficult to believe this has happened, after all the not letting myself believe it could happen. And X Factor? Hell I could probably win it now. The other stuff. As it turns out the technical stuff can get a bit emotional (see attached), so let’s move on. I’ve been trying to catch up with friends after being away for nine months so I’ve continued to race around London on slow trains. Although I’ve been away less than a year, it does often feel like I’m catching up on nine or more years sometimes. The first thing everyone comments on is my voice. With friends I’ve known a long time, for them it’s like I’m early 20s again – both in how I speak and how I hear. It’s difficult for friends to believe, without seeing it in action. I even had to ask my husband to stop shouting! I could hear that he was straining his voice, when he didn’t need to anymore. When I was deaf and he spoke loud, if he didn’t know a sign, I only discerned a tension in his body and face. A few friends also say they were too nervous to phone me because it seemed too crazy to believe that I would hear them. I’ve been doing quite well on the phone, the only problem is I’m often on a bus or a train and so can’t hear on the phone as well, although I can keep up with more in noise than before. Spending so much time on trains, one day I noticed I’d got blasé about not missing my stop, reading and relying on my hearing to catch the station announcer on the tube. At the weekend I spoke to people in lots of noisy settings. I’ve been very impressed at how gossipy hearing people are. I’d forgotten how much. Previously I just assumed hearing people led dull, limited lives. But there’s a lot going on for them, it’s clear. I also understood speech in noise on topics like art history, books and more gossip. The hardest place acoustically was an experimental music night (Eavi) at Amersham Arms. I got tired from all so much social whirling and this affected my mood and progress. I’ve not had time to do all my hearing rehab homework. And I started looking back. CI users often seem to say, “I never looked back!”. But I’m looking back! Why am I looking back? How will that help? It’s a kind of reverse identity vertigo. I’m going deaf in reverse. At a party I was hearing so much stuff, even in noise, that I went home a bit cross that I’d been missing all that for so long. A lot of deaf people will hear this phrase many times in a lifetime: ‘You’re not missing much!’. Without wanting to sound a sour note, it’s a reassurance that doesn’t console. That’s why I worked with interpreters and palantypists. At the risk of sounding like an over tired grump, It’s now talking and at me in the face on a daily basis how much I was missing socially, and it’s loads. Loads and loads. Even the apparent verbal diarrhoea is useful information to a human. Every deaf person knows that. But a hearing person might not agree. Now that I’ve infiltrated the hearing world with my bionic ultra zoom I can report back that there is a lot of information, it comes at speed, and it is all pertinent. I’ve had spontaneous conversations with strangers, grumbly British conversations, about the stupid queue, about the rubbish air con. I could do this as a deaf person to an extent but they didn’t play out the same way. This week I’ve come away from these inconsequential exchanges feeling overjoyed and amazed that it’s possible. My favourite was hearing a Spanish barrista telling me to bring my loyalty card next time to get an “esstamp.” I can hear accents, and so most of them are now less of a lipreading barrier. I’m still deaf in my head, still transitioning, so sometimes a minor mundane development will crop up and I’ll go into post-traumatic disaster aversion mode. To give you an example: I’ll think  “Someone is coming round and I have to let them in the house! What!? Do they know I’m deaf? I don’t know! Even if they know they probably think deaf people can hear on the phone and they’ll ring my mobile instead of texting!  And how will I hear the doorbell with no pager if I’m in my room? Through osmosis? How? It’s a new intercom system and I need to do a practise run with the doorbell before the person comes round so I know what it sounds like and whether I can hear it. I need to set up a practise run and then a plan B in case I can’t hear it. Then I will need to keep checking my phone and stay near the doorbell instead of working otherwise the person will be outside getting annoyed.” Cocking up letting someone into the house happened many times over the years. Doorbells, intercoms, it was always a mistake to leave that one to chance. But I realised I didn’t have the time to do anything about it this time. What happened was the person rang my mobile to say they’d be half an hour – and I heard that, including the accent – and I didn’t hover by the bell. I just got on with stuff and forgot about the bell. Then I heard it, and recognised her voice on the intercom saying ‘hello sophie’. Hello, come up. So that might sound like a small breakthrough, but one of the many small perks that will free up my time for (hopefully) big new things. Things are sounding natural but sometimes I still hear some bleeps on traffic. The footsteps in station tunnels sound like hundreds of plinky plonky piano notes – kind of repetitive music. I like it. But that will go I expect. People’s speech sounds natural, although with clearvoice program it deadens the sound of the room somewhat. Digging deep into my auditory memory I would say it’s a bit like listening to  someone talk inside a hollow tree. When people are outdoors, their voice will be in a smaller space than that, because the processor is subduing some of the environmental sounds a little. I think that’s what is happening, I’ll have to check that. I don’t know if that acoustic will disappear in time. It does seem to get better and better. After the retune last Friday, speech has more depth and accents are coming through really clear. People sound like them more and more. Only my voice still has a very slight residue of Darth Vader (to me not you). I like being part computer, it feels good, and this liminal state, this transitional period from deaf to hearing, is an adventure.

Hearing rehabilitation – week 1

This account was written on 28 August 2013, one week after my cochlear implant was switched on.
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What can I hear? What does it all sound like? So much changes every day, over the seconds sometimes. I’m in a near constant state of awe.

I’ve gone from feeling like a happy cyborg, because of off the techno noises I was hearing, to feeling like I’d gone back in time, or entered the body of a ‘parallel I’ – a more hearing me – a person I’d actually sometimes wondered about, and whether she would live life differently to the deaf me? I usually decided the parallel universe hearing me would be a massive bitch, and felt sorry for her even though she was rich and had a yacht and a helicopter and a better career than me.

Now I’ve stepped through some kind of quantum sliding door into this other life of sound, I feel more and more optimistic. The rate things are going I expect to lose the (alas) the remaining robotic sounding effects and acquire more and more naturalism of sound. Things get more natural every day. I’d heard from some CI users that things would sound metallic. Maybe I’m letting my expectations run away with me in my post switch on euphoria, but that hollow metal clank acoustic and vocoder double voice effect seems to be on the way out in most areas. Shit just started sounding real.

The process of hearing rehabilitation has amazed me. I’m astonished by the interaction of my brain with the electrical signals that stimulate my auditory nerve inside my head. Progress since I last wrote has been very rapid. When I went back to hospital on Friday the CI audiologist was amazed. She said ‘that’s amazing; you’re hearing all the sounds already’. I’m sure she has lots of similar post-activation amazements in her job – there is a high success rate with adult CIs, but I can see how this process wouldn’t ever lose its sense of wonder for the people who make it happen. Then she turned up the volume. Five programs of increasing volume to get used to before this Friday.

There have been plenty of perplexed pauses in conversations this week, not because I didn’t understand, but because I did. Listening to whole sentences without butting in to say ‘can you say it again?’, and instead just letting the words tumble in – like I can hear or something. Like one of the dreams I used to have about being able to hear.

I’m a bit rusty on the old quick-fire repartee. I keep reminding myself not to monologue at people, to ask questions and listen instead. At the same time I’m really excited and want to tell people everything I’m hearing, what they sound like, how they sound like a smurf, a robot, how they sound like themselves. As the days go by I’m telling more and more people that they sound like them. But how does the computer, the implant know how people sound? How does the brain know how to accept the electrical signals and instantaneously make Lulu sound like Lulu or Gemma sound like Gemma? So I’m still a bit rusty on the question and answer front. When I listen to friends I hear brilliant news and stories. I laugh at funny things they say, after hearing it the first time, without them having to tell a quip five times until it’s dead, or write it down. There is a new rhythm to real life dialogue. There are so many friends in my life whose jobs and personal lives were shrouded in mystery to me for years. Most people don’t email their updates (like I’m doing now), they talk.

But enough talk and more information. People have written to ask what the implant sounds like and what it does for me. Is it just a powerful hearing aid, or is it a cure? (Kind of both). Have other deaf people been annoyed with me (no! they understand why I did it).  As I said, things change every day so to make itself, I’ll break things into topics. There is loads, so before that I’ll break it into bullet points for people who can’t read the whole, rambling  essay.

Breakthroughs in week 1 as I moved up the program settings.

  • Day one I could understand my husband on Skype without signing and could hear a lot of sounds out and about.
  • Day two I could follow speech in quiet places so long as I faced the person
  • Day two I could understand numbers on the phone – male voices sounded normal, female voices skidded around the register like crazy
  • Day three I could understand strangers in noisy environments, ask directions, hear the price of things
  • Day 2  I managed to convince the squeal of the tube to become one continuous tone instead of broken into rapid bleeps
  • Enjoyed music at a synth club at Goldsmiths
  • Day 5 I could understand the Radio 4 headlines (listening on headphones). Whole sentences jumped out at me.
  • Day 5 speech lost the R2D2 bleeps and gained The Clanger whistle effect – although with the layer of naturalism and familiarity underneath.
  • Day 6 speech more natural and sounded good, with some vocoder.
  • Day 6 Followed complex (non small talk) conversation and jokes with previously impossible to follow Glaswegian friend whilst walking down the high street, sat on roadside café.
  • Day 6 went to party and didn’t want to leave within the first 20 minutes. Didn’t have to pretend to enjoy myself. Didn’t have to struggle and force myself to be confident. Understood what friends and accented strangers said.
  • Made phone calls every day, was able to make arrangements over the phone with male voices but not female voices.
  • Am able to enjoy music. This feels incredible. Some music sounds rubbish, some great. Not confined to tunes I know well, some tunes I know well sound wrong, some I don’t know sound great.
  • Day 3 heard small sounds such as car tyres (natural sounding) on wet roads and the pebbles being dragged back by the sea in Brighton (electronic pebbles) and children’s speech and laughter, whistles…
  • Was able to follow audiobook if I read at same time. And track news stories read out by someone else
  • Able to hear someone coming into the house and up the stairs (always used to be a bit of a surprise).
  • Can follow some speech in car without looking
  • Listened to Elgar’s cello concerto no 5 and it sounded great. Apart from some high freqs which went whistly. This will surely change as I am not fully mapped yet
  • Heard sirens and seagull and planes
  • Next week I hope ultra zoom’ will be enabled on my ci. This is for zooming in at people at dinner party and cutting out everyone else. A skill humans do not possess and is a feature exclusive to the Advanced Bionic Naida processor.
  • Friends told me my speech sounds different. I don’t yet understand what they mean. But it’s all for the good.

Hearing speech

After I wrote to you I travelled to north London on a train. I heard what the platform announcer said over the tannoy. The traffic and train were very bleepy still. When I arrived, I phoned my friend who said, “Oh right, okay, see you in 5 or 10 minutes”. I understood the whole conversation. I haven’t been able to do a call like this in nine years (longer for more complex phone chats). It was my second phone call of that day, the first to someone else had gone wrong when her voice distorted from helium smurf to Barry White.  So I resolved to keep trying, to make as many calls as possible, because some would be good. That evening as we walked in the part I could understand my friend! I still had to lipread but I could follow far more easily. I wished I hadn’t spent the morning indoors on my own – trying ‘not to overdo it’. I was wasting precious hours of possible hearing rehabilitation.

In Brighton the next day, I was very excited to understand a stranger at a bus stop when I asked directions, and the bus driver tell me the fare. I could follow my friend’s voice well, but not in the street. I couldn’t hear the waitress in a café over the counter because of the music. Hopefully future tunings will give me the programs to deal with that. I had similar problems at a restaurant lunch on Saturday, when the waiter came to clear and asked if we’d like to order coffee. Part of my Friday rehab had been about practising how to hear someone asking me if I wanted tea or coffee – but in the restaurant I asked the waiter to repeat five times until my sister (also deaf) signed to me he was asking about coffee. In his confusion at my confusion at not understanding such a simple question, the waiter got in a tangle with the other waiter and they dropped all the plates of half eaten food by our table. My mum’s hearing dog/food vulture moved in and cleaned up, and the splashes off the legs of Barney’s high chair. My sister burst out laughing, realising she now had two implanted rehabbers to deal with (her husband Billy Mager was implanted 9 months ago).

I’ve gone back in time, I haven’t ‘gone hearing’, I’ve reverted to being hard of hearing. Sometimes I can hear and sometimes I don’t know what the hell is going on. My brain naturally prefers to understand speech over lip-reading because it’s easier. So when the sound suddenly malfunctions – because of background noise or the wrong setting maybe – then I tumble back to deafness.

It’s worth noting now that I’m still deaf – more deaf as the implant destroys residual hearing and I cannot revert to hearing aids if the device fails. I still use sign language with friends and family. At night I take off the implant and cannot hear anything at all. But when I’m switched on, I’m like a hard of hearing person at the moment. I remember what that’s like because I went from hearing to profoundly deaf.

I went to a party with the Clearvoice program switched on and had a fun time. I was flabbergasted. Usually at hearing parties I spend my time trying to manage and squirming inside, masking embarrassment and paranoia, working overtime to lipread, and using all the communication strategies to make sure I’m not standing in a corner like a lemon – or standing in a group feeling ignored – often unavoidable. This party I was part of it. I had fun. It felt incredible. I could follow a stranger there with an accent.

I can do things more spontaneously, I feel like in future I won’t have to over plan things and avoid doing things in case I get too tired from lip-reading. I’ve been very social this week and haven’t had the lobotomy after effects of lip-reading which brings a vicious fatigue unlike other types of tired. At the time of writing, people’s voices sound like I remember, but more nasal. I guess this is because the auditory nerve is rehabbing the high frequencies. It’s nearly there. The high frequencies have stopped bleeping and now are just nasal. The acoustic needs a bit of work.

Traffic

In the first 4 days after switch on I was caught up in the noise of London traffic. Consciously and unconsciously I was trying to tame the electronic strings of bleeps that signified a passing car or bus. A few days in and the squeals sound like I remember. I hear the clatter of the train on the tracks and the ticking of the tube escalator as it reels around at the top.

Motorbikes were quick to get their audio act together – farty from day one and pretty much ‘there’ natural sound wise by Saturday. In the park with a friend I heard a siren 400 yards off. Before switch on my friend asked if I was afraid I’d regret being able to hear the horrible noises like UK sirens, but I like them. They’re electronic and I feel inappropriate joy whenever I hear one, because I can hear and recognise them. Buses sounded more rumbly and less bleepy from within as the days went on. I could hear the door bleeps on transport. I could hear people’s accents on the tube, and people asking me for directions at second repetition.

Radio and Music

I can follow talk radio news if I sit and listen but not if I do something else at the same time. The speech skids around the register a bit but I can control it with hard focus. I tried to listen to Kathy Burkes old desert island discs interview on iplayer but either my sound card on my laptop is rubbish or my ci isn’t ready yet. I hear radio better on my phone through headphones. I tried to listen to my Radio 4 sitcom Absolutely Delish: Grazing (still available on iTunes) whilst reading the script but although I could follow it some of the important sound effects (people eating) were missing. I decided to wait until I have more programming to finish listening. I have listened to French radio via iTunes and it was just wonderful listening to my hearing skid around until it fixed on the language and tuned into the Frenchness, although lacking any comprehension at this stage. I also flicked through the music stations and on YouTube (before I realised spotify has better sound!) trying out different music genres and testing old songs.

I was amazed and surprised how good music sounds.

After volume was turned up at hospital on Friday and new programs tuned I went to a synth jam where people played electronic bleeps and music on synths, my brain and implant were very happy. It sounded beautiful and right. I liked this music before I went deaf, but even more now!

If you are hearing and suddenly had to start hearing other forms of music the way it sounds to me at present you might say – ‘ugh’ – but for me, knowing that I’ve only just been switched on, and knowing my hearing will continue to improve in time, to be able to hear the melodies and for it to sound like music, not just a horrible mess of noise. Last night I decided I wanted to listen to Elgar’s cello concerto no. 5 after I’d heard a cello on my rehab sound recognition software. It sounded good, really good. Beautiful. Moving. Like proper music, like a cello. Like Jacqueline du bloody Pre.

I thought of all the times I tried to imagine it from memory. The times I found myself accidentally thinking about how I’d never hear music again, wondering what the new stars like Amy Winehouse sounded like (like a smurf so far). I knew I’d never hear music with much enjoyment again, not without someone asking me if “I could feel the vibrations”, not without my brain collapsing in horror at the disgusting cacophony of discordant audio lies fouling my brain.

In quiet moments I’d run through my memorised track list and play one in my head. Dusting off the old imaginary cassette tape, reeling the tape back in, playing it back until it got mangled halfway through. Half remembered intros and choruses mostly. I would look up lyrics and sing to myself when alone until in 2011 I could hear that I could no longer sing in tune. I would remember listening to things like this cello piece full blast in my school days in my room. I had a deaf mum so I didn’t need to play Metallica to annoy her and assert my right to rule the world. I played Shut Up and Dance records at full volume to no effect back then. No one cared, it was Harlesden and music was played loud with windows open.

Last night I was thinking all this as I listened to the nice cello music. And I wanted to know – why didn’t anyone tell me? Why the big secret? Why didn’t anyone tell me I could hear music again? That this was possible? That this happiness was possible? Was it only recently possible? Was it previously impossible? Why didn’t anyone tell me I was eligible before 2011? Was I really that blinkered to technological possibility? Yes.

And there is so much in the media about the controversy (which is not so controversial nowadays as more born deaf adults go for implantation) and very little information (unless you hunt for it) about late deafened adults who heard before and then regain that, and to what effect. It’s incredible. It DOES, at times, feel like a “cure”. This IS what hearing is like. It is not like a simulation. It’s not a bunch of vibrations in my head that I need to decode. Although there is some kind of audio decoding going on as I rehabilitate. Every day the everyday sounds are becoming less and less artificial. And the CI massive all tell me it gets better and better.

I should say now that even when I met up with the CI user in 2012 whose deafness path mirrored mine; even he said music wasn’t that good with his implant. He has a different make of processor than me, but also, more probably, maybe he had not been as deaf as long as me, or maybe he feels less happy with music one year on. So everyone’s experience and perception will be different. I’m happy though. Very happy and excited. That CI user I met who inspired me to go through with the op was still euphoric about getting his life back one year after switch on. I was suspicious of this euphoric exuberance which seemed to me to be almost evangelical – “Do it NOW!” He said, batting aside all my ‘buts’. I thought it would never be as good as it looked but it is.

I have just had an email from my speech and language therapist who has read my rehab diary notes and says I must take more time to relax as tiredness will affect my progress. So I will stop writing now and take a break. I hope this update gives you more of a sense of what I’m hearing – and not hearing!

Switch on

Before my cochlear implant surgery I searched for online accounts by deafened people. I couldn’t find many by people like me, who’d grown up hearing then done deaf.

When I decided to implant, I never expected such incredible results.  So, I’m sharing a few emails I sent out to friends and family in the first few weeks after switch on.

My background? I grew up hearing, then nearly lost all my hearing in both ears from my late teens onwards. I wore hearing aids for ten years and started using sign language interpreters and palantypists at work.

That’s the deaf me in a nutshell. Here is my first account, written the morning after my CI activation:

My cochlear implant surgery was quick, an hour and half. I recovered swiftly, without much pain or side effects.

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A month later, on 20 August 2013, my Advanced Bionics Naida CI Q70 was ‘activated’.

Immediately following the initial ‘switch on’ procedure, where the audiologist played a series of beeps,  I was able to hear my voice, which rapidly sounded more like my voice as the seconds went by. It was as if my brain was decoding and descrambling some 1990s bleepy electronica and turning it into speech – vocoder style.

When I speak R2D2 similtaneously mimics my words in bleep language. These bleeps will go away in time as my brain rehabilitates to the high frequencies that were missing for years. Speech will sound more natural in time.

After my appointment I called my husband on my mobile. His voice was clear and I understood him (at first but not when he said “I love you” because I laughed before he said it and the sound fragmented from then on). He was away working so later we video skyped and I could follow everything he said without him signing and typing.

The initial, intensive hearing rehab will take a few weeks, I go to hospital for weekly tweaks and rehab sessions. On skype Tom’s voice was crystal clear but with a metallic edge. . I’m exposing myself to lots of sounds, training my brain to interpret the electrical signals that are being sent to my auditory nerve via electrodes inserted into my right side cochlea.

I was with friends yesterday and their voices sounded low in the mix – distant. Frustrating. This was because the CI mapping is not complete. I have to go back on Friday. Sound quality and speech comprehension will continue to get better and more natural.

Traffic sounds like cars made of skidding bleeps, although yesterday after many motorbikes, one sounded farty instead of bleepy. More like a motorbike. This demonstrates the process of habituation.

I can hear everyday domestic sounds well like water running and appliances bleeping. This morning I tried to hear a cat purring but he bit me.

I listened to an audio book whilst reading – that was good and now I’m listening to the Radio 4 Today show, presented by people who’ve overdone the helium. The helium effect is another early days thing. I don’t know what is being said yet, but it’s miles better sound quality than before. It sounds nice! Maybe one day soon I will understand it.

It’s an adventure. Getting implanted felt like a drastic option. But meeting an implanted person who had been deafened like myself, swung it in the end. He said he’d got his life back and had never looked back. He could speak to people on the phone and everything. After many tests, the surgeon and audiologists said unreservedly that an implant would help me a lot, more than hearing aids, and that I would do very well.

It’s tempting to up the jeopardy I faced in undergoing surgery (they drilled into my skull etc). It’s tempting to raise the stakes to you, in order and replicate the magnitude of the ‘journey’ I and others go through with implantation. There are risks, I was scared, but when I looked at the whole thing rationally and took a lot of time to inform myself, and speak to other implantees, it seemed like a very good idea. I’d tried everything else and I still had lots of communication problems.

But it was still tough to suspend my disbelief and believe surgery would work for me, not after so many years of adapting and “managing my expectations” about my hearing, It was tough to dare hope I could reverse what I’d lost. Because to hope is to expose myself to having those hopes dashed, which I eventually decided I’d be fine with. FINE, dash my hopes, I said. I love that all dashing stuff. It’s like music to me.

It would take several pages to explain the emotional back end, or why it was important, and such a block, when everyone is naturally more interested in the switch on results, but I just wanted to convey a little bit of what I was feeling in the last year, in order to give you an idea of how I am now feeling. I haven’t had time to start feeling it in fact. I still daren’t. Not until I can follow live speech in conversation. That’s what I’m after.  Crossing my fingers for Friday’s mapping bringing more breakthroughs.