Tag Archives: hearing rehabilitation

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.
CI2SOPH
CI2SOPHCI2SOPH (800x600)
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!