02/01/23
Day before activation
We put in a full touristy day in Berlin. It was a great distraction. There was a degree of disbelief that I had reached this stage. I was like a dog chasing a car. Unlikely to catch it and wouldn’t know what to do if he did. Amazingly, it seems to have worked out. Now I just need to keep my expectations low and realistic. My son prank called us from the room next door every 5 minutes with an ever expanding array of characters.
We went out for dinner, back to the restaurant where I went after being told that the CI was a runner. It’s great to be back and in good company.
03/01/23
Activation day
We sat in the hotel room watching the sun rise slowly over Berlin. Light glinted off the sphere of the TV Tower. There was nervous excitement and hope and fear. Expect the worst and hope for the best. My family spent the time exploring Berlin and I went to the activation. We planned our rendezvous and I imagined what it would be like to hear in stereo again. I considered my privileged position, how lucky I was to get to this stage and hoped that writing this down will help someone else through the process.
I think about what is going on in my brain. The tinnitus has definitely been subdued- in both quality and volume. I wonder if they’ll measure it again today? There is a significant research opportunity to objectively measure tinnitus with an appropriate brain imaging technique before surgery, pre-activation and post-activation as there must be a pretty unique series of events happening in the brains of people in my situation that could shed a light on causes of tinnitus and ultimately lead to effective treatments. Noisy silence no more?
It is a beautiful blue sky day. There is a Light that Never Goes Out by The Smiths comes on shuffle as I walk to the hospital. I arrive early and hand over my magic S2 form. The joys of the EU. The receptionist is younger than me and has excellent English. She phones a colleague to talk her through the convoluted process that magically works, again!
I’m back in the hotel room prior to some celebratory tacos. I’m savouring snippets of silence between the kids popping in and out of our room and the regular prank calls. The activation was incredible. The doctor had a Kanso 2 (Cochlear off the ear processor) ready for me when I arrived and we got the right magnet strength for it to stay on my head. He then connected the device and started testing, individual frequencies initially. When he played each frequency it sounded like a note from an old Wurlitzer organ. He was pretty happy that I could tell the difference between the frequencies as he moved along the length of the electrode array. There was a huge relief that all the electrodes worked and that the cough/cold did not cause any problems. I was amazed with how high-pitched some of them went. I don’t think I’ve ever heard sounds that high-pitched. He then swept across a series of tones going from one electrode to the next and checked how each of the 22 electrodes sounded relative to their neighbours. This allowed a balance of sound across all electrodes. At this point it was time to turn on the microphone and see what I could hear. There was a moment of tense anticipation while he adjusted the settings.
I could hear in my left ear again. It sounded like a robotic voice coming down a big plastic pipe. Like something from a 1970s episode of Doctor Who. Despite the strange sound quality I could understand what he said. Obviously I had my good ear making it a lot easier, but as time progressed the echo diminished and I could understand words with my right ear blocked. It felt incredible to have a sense of balance in my head again and to hear things in stereo, albeit strangely. Pretty much straight away my tinnitus disappeared. The scourge that had accompanied/haunted me every waking hour for the past year and there it was, gone, or not noticeable. If I searched very hard I could find it, but why would I be doing that? The doctor went outside the room with a microphone connected to the CI processor and I could hear a robot on helium saying “testing, testing, 1 2 3 4 5 6 7”. After going through some general tips and tricks about the implant he sent me on my way giving me two appointments, one for six months’ time and one for one year after the surgery. In the meantime I’ll have 10 mapping and auditory rehab sessions with the cochlear implant rehabilitation centre across town, starting tomorrow.
It was fantastic to see my family again at the archway entrance to the hospital. My kids’ voices in robot chipmunk stereo competed with the surrounding cacaphony of traffic and people coming and going from the hospital. We went back to the hotel for some afternoon tea and I drank in all the sound that was thrown at me. When the sound stopped briefly back at the hotel room, I heard silence for the first time in a year.
It’s very strange to be able to sit in silence after a year of severe tinnitus. What is left of the tinnitus, if there’s anything there at all, is a very quiet high frequency tone standing alone, something that is easily lost in everyday sound. I take a pair of over the ear headphones, placing one over the sound processor, and play Here Comes the Sun. While it isn’t perfect stereo hearing like before my sudden hearing loss, it is some kind of stereo. Some elements of the song sound perfect like the snare drum and some of the higher pitched frequencies like cymbals or hand-claps. The voice and the guitar sound atrocious, but music is a long game. This is a pretty good start and with lots of practice it will only get better. It has been a good day and it’s time to leave the hotel to go to Taqueria el Oso for the best tacos in Berlin and some margaritas.
04/01/22
Day 1 after activation
Coming up out of the U-Bahn station into purple morning light, the wind rushes past me as another train comes into the station. I’m slowly getting used to stereo input and getting my brain to match up the different versions of sound on each side. I can tell the direction that some of the cars are coming from.
In the auditory rehab session, we went through a similar process to yesterday and dial down the volume to avoid overstimulation. I leave with three programmes: 1, 2, and 3 that get successively louder. Programme 4 is my original Charite map that is very loud relative to the others. It also scans to detect the kind of environment that I’m in and adjusts accordingly.
Things I heard through the CI today:
Directionality- someone dropped a bucket while loading their car and I instinctively turned to see the source of the bang
Morning birdsong
The children running up the metal steps of the U-Bahn station
Lots of distorted noise throughout the train and plane ride
The sound of running water and crinkling crisp packets
After the trip I’m back at home talking through the past few days with my wife, eating hot, buttery toast. I heard the scrape of the knife across the toast, sibilant speech sounds, the chi-hissss sound of opening a can of coke and the click-clack of the dog’s nails on the hall floor as she paces, waiting patiently for everyone to go to bed.
My job is to work up through ascending programmes in terms of volume and for my brain to start learning to filter signal from noise. I’m told not to practise with CI rehab apps yet- too early. I still open them on the phone, just to have a look. I appreciate how it could be disheartening not being able to distinguish simple words at this stage of the process.
Everyone’s gone to bed. There were still a few creaks of beds and floorboards, but there was pretty much silence. On Programme 1, which was a gentle start to the incremental process, I can hear a reduced version of my tinnitus in silence. When I switch back to Programme 4 (the original Charité programme) even that faint tinnitus broadly disappears. I hear the second hand of the clock ticking clearly and see the speech therapist’s point of sticking with a gentle introduction to help my brain adjust to all the new input. Noisy silence will be a thing of the past soon, hopefully.
05/01/23
Day 2 after activation
I walk the strand in Dollymount, the processor under a hat as it was super windy and microphones and wind are a bad combination. I don’t want to take the processor off as my brain needs to learn to filter noise. It felt like wasted rehab time though, a staticky mess, not contributing to the recovery process. I was keen to combine my auditory rehab with beach walks as they have been a big part of how I’ve handled this situation so far. As an alternative to the wind sounds, I switched to Programme 4, turn the mic to zero, and streamed some Seamus Heaney poetry. The combination of a wooly hat and earbud in my good ear gave me silence from the wind. I know and love these poems. They have been a balm for bereavement, for the grief for my mother, and the grief for my hearing and former life. I recognise them all. I can pick out a lot of the words. Am I hearing them properly, or do I just know them? Seamus Heaney’s delivery has been raised up the frequency spectrum due to how the CI registers sound, but I’m hearing it through the CI alone:
“I was a nuisance, tripping, falling, yapping always”
“A four-foot box, a foot for every year”
“Like thickened wine, summer’s blood was in it”
I reached the car and “When all the others were away at mass” comes on. It was overwhelming to hear an approximation of it (in stereo). Tears heated up in my eyes. I switched the processor back to Programme 1 now that I’m out of the wind. I need to continue the slow incremental work that will transform what I now hear into normal speech that integrates with my normal hearing on the other side. Operating at too high a volume for too long might lead to overload or sensitivity to sound. Of surgical necessity, the electrode array is in the part of the cochlea that usually registers higher frequencies. This is why everything sounds high pitched. Apparently, over time your brain adjusts these frequencies, pulling the pitch downwards to what you should be hearing. There will hopefully be a slow process where I graduate from chipmunk Seamus to the real thing over the coming weeks and months. People with CIs tend to look back fondly on this phase of robots, chipmunks and Mickey Mouse voices as it was the start of new hearing for them too and the first step in an ongoing process.
06/01/23
Day 3 after activation
We’re getting back out into the world. The isolation of hearing loss and the need to avoid COVID as a threat to the surgery and activation have now passed. We go to see John Huston’s adaptation of The Dead by James Joyce. Hearing is still a challenge in the restaurant and pub afterwards, but what hyperacusis and reactive tinnitus used to make impossible is now possible.
I don’t really care what anyone thinks of the thing sticking onto the side of my head. Will anyone ever ask me: “What’s that thing on your head?” As comfortable as I am with it, recognisability as something to help with hearing is a factor in choosing between my current “off-the-ear” device and a “behind-the-ear” device, which the general public are probably more familiar with. I think about how I would explain it: it’s not a hearing aid, as I have no hearing to aid. I suppose it’s a prosthesis. Imagine you have lost a leg-you get a prosthetic leg. This is an electronic ear that sends sound signals to my brain and helps me navigate the world around me. You really don’t appreciate how essential binaural hearing is until it is gone. As I explain this to myself in my head, I get a bit pissed off. We would never expect someone with one leg to hop around all day. Why are people with single-sided deafness not able to easily access a prosthesis that will dramatically change their lives if they choose that as an option for them?
08/01/23
Day 5 after activation
I document new hearing (#NH) so that I can pull it all out of the narrative in the future to produce a timeline of how the CI hearing developed over time.
#NH watching the Matrix- sound of gunshots, tingling of bullet casings hitting the ground, some of the dialogue (with the help of subtitles)
#NH sound of dry kitchen paper wiping down breadcrumbs from the counter top
#NH sound of a light switch
I misbehave and switch to Programme 4 and bring Seamus Heaney out for a walk up and down Griffith Avenue with the mic on silence. Is his voice deepening? Too early yet.
The kids are gone to bed and my wife is away with work. I savour the silence. It picks up every crackle and movement of the dog or of sounds that I don’t even recognise, but it’s the gaps between that are golden. There are tinnitus remnants there, but they’ll fade and I’ll get on fine. I pick at the banjo a bit. Sound kills tinnitus. I’ve got my natural hearing and a lo-fi version on the left. Distorted, high pitched, going through a wah-wah pedal, but bloody glorious relative to the year gone by.
09/01/23
Day 6 after activation
#NH my son playing with lego
I’m sitting in silence, reading a book, with my son playing with lego on the floor and the clock ticking beside me. I move to sit on the floor with my eyes closed and block my good ear. The dog thinks it’s time for belly rubs and runs around me intermittently licking my face. My son walks to random places in the room and shakes a biscuit tin filled with lego. I can point out his position five times in a row. This is probably not the best test in the world, but I’ll take some sense of directionality a few days after activation as a big win.
#NH pressing buttons on the remote control
#NH bubbles from can of coke
#NH cracking of logs on the fire
10/01/23
Day 7 after activation
My daughter and her friend are home from school at 10 in the morning. There’s an electrical fault in the school and everyone gets the day off. There’s a Minecraft marathon ongoing with a (sometimes dubious) accompanying playlist. I hear my daughter exclaim “Oh I love this song!”, worried about what’s coming next- she doesn’t disappoint and the two of them tear into Dolly Parton’s Joelene. Tinnitus is not a concern. We talk about Dolly Parton having a “good writing day” and penning Joelene and I Will Always Love You on the same day.
#NH sound made by taking the skin off a clove of garlic
#NH scratching the plastic of the Kindle while changing pages
11/01/23
Day 8 after activation
#NH razor sound on skin while shaving
#NH sound of deodorant spray
Musical genius Beck has a wicked snare sound on his song Colors. It punches through and sounds crisp and clean. Likewise Road to Nowhere’s marching snare drum tinkles through the CI. Sibillant sounds also get through more clearly “We’re on the road to paradISE”, “The future is CERtain”.
Music is so much more accessible to me now that I don’t have to pay the price of nasty tinnitus. We’ve a new bass guitar in the house after Christmas and a serious hunger to learn new songs for my eldest daughter. We play lots. Hey Joe, This Must be the Place, Dried Roses, Call Me Al. My younger daughter joins in singing Here Comes Your Man and playing the mandolin. This was something I missed and swore I’d do more of. It was also a significant regret that I didn’t prioritise playing music enough when I had perfect hearing. Playing music together is a way to delay screen time or avoid them watching some brain bubblegum on TV. It’s fantastic.
I listen to Seamus Heaney again while out for a walk. The mic muted, there’s no wind noise and chipmunk Seamus sounds great. Postscript is there in full. When I get back to the house and stop streaming I can hear every movement of the keys in my pocket and the dog’s poo bags. The level of hearing for some frequencies is incredible. I’ll be able to hear a fly farting or a one-eyed mouse weeping soon (thank you Tommy Tiernan).
noisy silence 