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.