11/01/23
Day 8 after activation
I drop my kids to their piano lesson. In the relative silence of the car, I turn on Programme 4 (the loudest) and listen to the rain pelting the windscreen. Cod Liver Oil & the Orange Juice by the Mary Wallopers comes on. With little background noise it sounds pretty good in stereo. The snare drum sounds presentable. The banjo and the singer’s voice are pretty high-pitched and come through a little too. When the full band come in, it turns to sonic mush- too many different things going on for me to get clearly. As it’s raining heavily, I drive a little to get closer to the piano lesson pick up, leaving on the loud programme. The rattling sound that has been in the car all afternoon is now coming from behind and to the right. I reach back when I’m at traffic lights and pull a plastic bottle from the pocket in the rear passenger door. The noise is gone. Cars drive past in the opposite direction. I close my eyes and hear them passing by and locate them in my mind’s eye from my new binaural sound input. Proper spatial hearing like before will take a lot of work (if I ever get there), but this is better than my single-sided deaf days. I switch back to Programme 3 before the kids get in the car.
13/01/23
Day 10 after activation
It was an early start at 4am and I’m currently sitting on the plane with my son. We’re off to Berlin for mapping number two. I feel ready for more sound and am happy with the progress since the last visit 10 days ago. There’s great excitement about the trip to Berlin. We plan for the kids to get a special weekend each and to come again as a family before the last one. The deaf dividend!
The CI processor pops off during the flight and goes between the seats into the row behind me. When it’s off, I get a sense of fullness/a dead feeling on the left side of my head and the tinnitus takes off. The family behind me are sleeping and I can’t wake them up to look for it. I was misbehaving not wearing the tether, but am I going to tether forever? I’m sticking with the highest strength magnet, so that the CI processor will stick with me. This kind of scenario would drive me towards a behind-the-ear processor which is a little more stable with two anchor points- the coil/magnet and the processor that sits on the ear.
There was a quick airport transfer and we settled in the hotel before heading out to Cochlear Implant Centrum. The appointment involved a quick catch-up and summary of the last week; connecting my CI to Cochlear’s software, checking if all the electrodes are behaving; a review of my use during the week, lots of hours spent in speech- a good learning environment; and mapping. This essentially involves going through every second electrode at increasing amplitude to measure how my auditory nerve responds. This needed to be done with an old behind-the-ear Nucleus 6 processor that can take these measurements. I’m still not sure how I feel about behind-the-ear versus off-the-ear. Once my nerve response was measured, we set out a new map and tested the levels to see if they were too quiet or too loud. It’s a super technical and tiring process and difficult to get your head around. Apparently the impedence is decreasing, signalling the reduction in resistance to electrical current, as expected. This is a good sign. Does it reflect development of new connections/pathways or decreased inflammation following the surgery? More reading required. We also swept through all the electrodes to look at relative loudness and to try to keep the sound level consistent across the board. This informed three new programmes of increasing volume that I’ll have for the next couple of weeks.
We agree the plan. It’s too early for apps looking at speech sounds. I’ll listen to audiobooks with the text to follow and poetry/podcasts, sticking to what’s comfortable. It was a very positive session and we head out for a nice celebratory afternoon: ice creams, TV tower, tacos, gazing into the axe-throwing pub and a movie night in the hotel room. My hearing is improving all the time and I’m delighted to get more input.
15/01/23
Day 12 after activation
At the airport following a fantastic weekend with the agenda set by a 10-year-old boy. It was pure magic. Trips to the computer game museum, a tour of Berlin’s Lego stores, movie nights in the hotel and time in the Natural History Museum with an emphasis on Dinosaurs. Then there was the fantastic food: tacos, hand-pulled noodles, falafel, Korean fried chicken, New York-style cookies and plenty of pretzels fresh from the oven. The weekend overall was a beautiful experience. It was notable for how little my hearing featured. We went straight for the mapping on day 1 and have been fun-focused since. There were minor issues like a good few hours of rain, but a new hat secured the CI processor, kept it dry, and stopped me from knocking it off when putting up my hood. It’s constantly on my mind that I’ll knock off the only processor that I have and watch it roll in slow motion along the path, just going beyond my grasp as it plops into a drain.
18/01/23
Day 15 after activation
First trip back to do the full length of Dollymount for a while. I had a great trip home to see my Dad the last couple of days. Isolating prior to surgery and the recovery time/avoiding COVID prior to activation combined with his subsequent holiday meant that we hadn’t met in ages. It was great to get out for a pint with him and my brother without frying my head with tinnitus. The pub was quiet and there were no barriers to conversation. It was the same catching up with multiple friends and family- I was part of the conversation and it flowed because I went undistracted by hairdryer-volume tinnitus. I can’t say how much the CI is adding to my speech understanding at this point.
In the sitting room after the kids have gone to bed. It’s a cold January night and there’s a fire on. I couldn’t hear anything and wondered if the CI was on, but then I realized that what I was experiencing was actually silence. I tuned into the sporadic sounds of the house and noticed the gentle crackling of the logs in the fire. We played some songs this evening. Belting out Atlantic City (The Band cover version) on mandolin and bass. There’s no tinnitus as the last chord rings out, just the transition from music to silence. That tyrannical Pavlovian deterrent to music (listening and playing) is practically gone.
I go hammer and tongs at the rehab. I sit here listening to an audiobook using Kindle WhisperSync. This highlights the words on the Kindle app as the Audible edition plays. I’m replaying chapters that I listened to earlier on the beach. Picking up the words and meaning that I missed the first time around- mostly the names of people or places or other elements of stories that wouldn’t be obvious from the context or surrounding words. It’s hard to be precise and it depends on the background noise, but I’m probably getting over 85% of the words. In one way, this represents huge progress since activation a couple of weeks ago, but in another way, it shows the journey left to travel to get maximal word recognition scores before I go back to work. I’m also conscious that there’s a big difference between streaming via Bluetooth to the CI and listening acousticly through the CI’s two microphones. This is my work now and I spend all day at it.
19/01/23
Day 16 after activation
I spend time writing. I want people in my situation to be able to advocate for themselves. If you don’t advocate for yourself or get someone to do this for you, you could end up living a fraction of a life.
I’m in the platelet clinic. My mother died from acute myeloid leukaemia. She got through a lot of platelets and I feel close to her here. When the Blood Bike volunteers pass me on the road I’m reminded of nights in the oncology ward in Galway waiting on the platelets or red cells to arrive, delivered from Dublin by Blood Bike volunteers in a relay. While the machine spins my blood and extracts the platelets, I flick through Twitter and see a story about CRISPR: “Experimental CRISPR technique has promise against aggressive leukaemia”
A 13-year-old girl whose leukaemia had not responded to other treatments now has no detectable cancer cells after receiving a dose of immune cells that were genetically edited to attack the cancer. This medical miracle is just spectacular.
My own miracle continues. I’m listening to an audiobook and following on the Kindle app when needed. I stream to the CI and mute the mic input. WhisperSync is fantastic for this job. It’s a section that I listened to earlier on a beautiful beach walk in the winter morning light. I go over it again to see what I missed. Not too much! As I’m listening the narrator’s voice seems deeper. The chipmunk-pitched tinny version was still there, but the proportion of the sound that seemed normal, i.e. with the right frequency seemed to have increased. Like the sound signal was split in two, with half being sent to the speaker normally and half going through a pitch shifter that gave the effect of digital helium.
22/01/23
Day 19 after activation
The kids are spending half an hour gradually going to bed and as I type, the volume seems to be increasing. Using the loudest setting from the latest map, my word recognition is good with the audiobook, with the exception of walking near traffic where the competing sounds block out some words. If I turn on the original Programme 4 map, it’s louder and easier, but I feel I need my brain to be able to pick out meaning with less volume and avoid Programme 4 when streaming.
We were out for dinner twice this weekend. A side effect of ditching tinnitus. Both times I switched to the louder Programme 4 map and did not struggle with tinnitus, word recognition or any degree of overwhelm from the louder volume. I feel that in louder environments I need more volume from the CI to match the volume going in to my good ear.
23/01/23
20 days after activation
I’m waiting at the bus stop to go into town. It’s my first time ever going to the cinema on my own, aged 42. I feel I need to defend a solo cinema trip in daylight on a Monday. Not sure why. I’ve had the 6am swim, got the kids out to school, gone for the 12km walk on the beach, dropped off the forgotten homework, corresponded with the hospital and the Heath Service Executive about bills for the initial outpatient visit and paid the TV license. I think I’m good to go. It’s a movie called North Circular about the musicians and life on a main thoroughfare through the Northside of Dublin. An auditory and visual spectacular.
24/01/23
21 days after activation
An audiobook accompanies me on the first 6km of the walk, with a short interruption for some work calls. I need some variety for the return leg. More female voices. Maeve Higgins made the best podcast I ever heard- St. Valentine’s Bones. I search for her on Apple Podcasts and get a recent episode of her being interviewed. The laughing comes across badly on the CI and I will not last 6km with it. I dig out the Valentine’s Bones documentary from the RTE Doc on One app to see how much I’ll get. Very little is the answer. On Programme 3 the background noise of the waves and the growing wind drown out the narrative. Not much luck with female voices so far. I switch to Programme 4. I tend not to use this now, choosing instead to work with the quieter more recent mapping on advice from the Speech Therapist. The original mapping volume is too high for now and I need to work up gradually. I’ve been listening a lot on programme 3, the loudest of her maps and I’m getting decent levels of word recognition, if the conditions are right. Background noise cuts this. Not just background noise going in the microphone of the CI processor, this can be muted, but the sound going in my good ear. Just like the tinnitus in my bad ear competing with my good ear through every conversation, song and moment over the year before activation, my good ear is now competing with the CI input. By listening at lower volumes I feel that I’m making my brain chase the sound.
With a switch to Programme 4, I’m blown away. I can hear her. I can hear the pitch of her voice and it sounds clear, near normal. There’s a tinge of robo-chipmunk, but where this was once the dominant sound, it is now a minor element of the mix. The music is mush, but even the male dialogue is pretty clear. There are only a couple of bits I miss. Something about her ideal boyfriend and banana bread and a segment where she interviews a guy central to the documentary and the mic is closer to him than her. I give Seamus Heaney another spin. Chapter 44. 57 seconds. While all the others were away at mass. His chipmunk alter ego has receded. His voice is closer to normal. Robo-chipmunk Seamus is still there, but again it’s making up about 20% of the mix.
I’ve worked up a hunger and get lunch at Happy Out. An iridescent starling lands beside me. A professional groker, coveting my food. His clicking noises, whistles, chirps and mimicking of diving bombs and small dogs barking are in clear stereo and the direction of the noise from the other starlings around me is clear. I think a chattering of starlings is the right collective noun for this situation- they don’t have the numbers or altitude to constitute a murmuration. Starlings are professional mimics- Mozart kept a pet starling, it was either the inspiration for Piano Concerto No 17 or it learned motifs from it (singing two notes sharp). The starling died around the same time that a young prodigy called Beethoven came to visit Mozart in 1787. Starlings can mimic speech too. Their mimickery sounds like an approximation of what I hear through the CI. As they mimic words and phrases that they have been exposed to, their diminutive anatomy obviously leads to a degree of pitch shifting. Listen for yourself here. I’ll work on my Garage Band skills and make a mock up of what I hear at some point- this is one advantage of giving CIs to people with single-sided deafness- we can tell people what it sound like.
High pitched sounds are great: the rustle of a crisp packet, running water and starlings, but I can’t sit beside a river eating crisps all day and I don’t work with starlings. I need to be able to understand humans with varying voices, accents and diction amidst complex auditory environments where everyone competes to be heard. I’m not ready for that yet and slowly realise that all the intricacies of human hearing cannot be completely replaced with technology.
noisy silence 