Hearing rehabilitation – week 1

This account was written on 28 August 2013, one week after my cochlear implant was switched on.
CI2SOPH
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CI2SOPH

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!

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