25/01/23
22 days after activation
I try to surround myself with sound and increase opportunities for streaming to the CI. A long walk to a seawater pool across town combines badly needed exercise and streaming time. The trucks trundle to and from the port, some with trailers clattering like crazy. There’s no juice in my noise-cancelling earbuds so I keep going on the loudest map and get a good proportion of morning radio with a mix of voices despite the crazy background noise. The sound quality, pitch and volume are a long way from my good ear, but it’s hearing where there was deafness a little over three weeks ago.
27/01/23
24 days after activation
Another 4am rise to go back to Berlin. These blog posts have been pretty positive so far, but this process has its ups and downs. There was a wobble last night. A mix of being overwhelmed and bone-tired. Exhaustion from the past couple of months and the grim year that preceded them. Many people have used the analogy of this process being a marathon, not a sprint, and to extend that analogy, I’ve just hit the wall. There was a dose of wishful thinking: imagine if I never lost my perfect hearing, imagine ditching this whole process and going to work as normal in the morning, imagine a much less complicated life. Wishful thinking will get me nowhere, if my granny had wheels, she’d be a bike. Acceptance is the right route. This is what’s happening now and the road that I’m on is the best way to get back to some semblance of normality. Head down, keep going.
We dash to make it from the airport to the CI Centre for the 11am appointment, but it’s good to frontload the CI stuff before a weekend of fun (read shopping) with my 12 year old daughter.
The appointment opens with a general chat to see how I am doing. The Cochlear software is used to record the lowest thresholds at which I can hear across the electrode array. We sweep through the different frequencies setting the quietest and loudest sounds. I can see how the impedance has dropped over time since activation. Less juice required to transmit signals- possibly due to decreased inflammation post-surgery. The new maps are transferred to the Kanso 2 (off the ear processor) and a grey loaner Nucleus 8 (behind the ear processor).
28/01/23
25 days after activation
It’s a shopping-oriented weekend. I spend a lot of time sitting in the shop’s Dad zone waiting to be collected. Loud environments are just static with the CI at the moment, with closer voices or loudspeakers punching through as a distorted, high-pitched version of what my good ear hears. I step back the programmes sometimes to a quieter version to give my brain a rest. I need to give myself permission to relax.
My super sociable daughter votes down a movie night in the room, opting instead for some people watching in the hotel lobby. It’s the end of a long (great) day. There’s a little work on this and some chats about the weekend and tomorrow’s plans.
Back in the room I remember that a lot of people reported great experiences using over ear headphones with the Cochlear Nucleus processor. (Warning- music appreciation is VERY context dependent- experience with headphones in a quiet hotel room cannot be extrapolated to speakers, more complex listening environments, concerts or music sessions- where music through the CI remains a jumbled mess; music appreciation is a moving target depending on time since activation, the amount of time spent working on it and luck!!)
I had tried headphones with the Kanso on activation day, but not much since as it was tricky with the position of the Kanso and I always ended up knocking it off. I also know that music is a long term project and that it is quite early to expect any degree of music appreciation. It was a major revelation all the same. The Mary Wallopers go on again and Cod Liver Oil and Orange Juice sounds pretty, pretty good, except when there’s too much going on. The distorted guitar-driven rock or grunge from my youth fares well: Today by the Smashing Pumpkins, Say it ain’t so by Weezer, Bombtrack by Rage Against the Machine. All in stereo. Not crystal clear surround sound by any measure, but stereo sound with some elements of the song faring better than others. Amazing.
29/01/23
26 days after activation
We wake up and my daughter squeals with joy at the pristine white blanket over the city below. We look down at Alexanderplatz and the TV tower and watch the snow falling softly upon Berlin.
I got through my hearing test playlist from Jan 2022 on the train to the airport and it’s passable. Just yesterday I was thinking about the futility of me walking around the headphones section of MediaMart and today I’m listening to a form of stereo that might develop into something enjoyable, hearing way more than I did this time last year on my trips from the chamber. One issue with stereo music appreciation is the breakthrough of any environmental sounds – the train, the wind, other voices. Ideally I would be able to split the Bluetooth signal between the CI and a right ear bud, controlling the volumes independently to get the mix right. When you mute the mic in the CI during streaming, it removes the distraction of any background sound. I haven’t figured out how to do this yet though and the feedback from a few sources is that this is not currently feasible.
30/01/23
27 days after activation
There are little pangs of frustration again. Progress is slow. Running water is crystal clear. Plastic packaging too. As I have mentioned before, if my life revolved around eating crisps beside a river, I’d be sorted, but alas. I think some of the malaise is a combination of a lack of patience and a degree of guilt around taking a chunk of time out from work to focus on this process. I’m keen avoid another period of auditory fatigue like I had in the previous year. When I think along these lines, I also consider the potential for regret around not putting as much as possible into the recovery process.
Routine helps. I try to nurture a routine and accept that not every day will be super and, medical miracle aside, I have a lot of climbing to do to get anywhere near where I was when I walked out of work on Christmas Eve 2021. It was a good time to happen upon this video on Twitter. I’m not in the same situation, but I know what listening fatigue is from the past year and I also get the sense of overload from some situations from my brief CI experience. In the replies a hearing science researcher shares the following studies from their group on hearing fatigue:
Fatigue from effort & emotional drain of hearing loss necessitates breaks and recovery
Fatigue can have an impact on wider well-being
Getting a first-ever hearing aid can reduce daily listening fatigue
I look for a concise comparison of the Kanso 2 (Off the ear) and the Nucleus 8 (Behind the ear) processors, but can’t realy find anything other than disparate threads on discussion forums. I put together this comparison which might help others:
02/02/23
30 days after activation
My batteries ran out while cooking the dinner. There was a warning briefly (5 minutes) before. Not sure I could do disposable batteries in the long term. I need a proper gauge and a sense that I’ve got x hours left when I start each day. I won’t always be in a scenario where I can change batteries quickly. Getting through dinner and the drop offs to music lessons meant that I got reacquainted with my tinnitus for a while.
03/02/23
31 days after activation
Away for the bank holiday weekend. I treat myself with the Charité map while watching an amazing directorial debut: Sunscreen. #NH (new hearing) fire crackling.
06/02/23
34 days after activation
Fantastic weekend in Clare. 3 swims. Catching up with some of the people that I swam with back in November when isolating prior to the surgery.
#NH sound of the sizzle- rashers, scrubbing brush – cleaning. I am no longer irritated by sound, my hyperacusis seems to be a thing of the past. I hoover and cook more. I’m generally a better, less grouchy contributor to the household.
07/02/23
35 days after activation
Out in Dollymount for the morning walk and a dose of CI streaming. I try over the ear headphones for some of the time. I feel I need a mix of direct streaming and some binaural hearing. The bank holiday weekend meant that it was hard to squeeze my rehab regimen in.
This is where my rehabilitation/habilitation routine stands at the moment:
10 exercises on Hearoes first thing in the morning, taking a screenshot of any words that I miss. I look at the final tally and might do some extra exercises focusing on whatever I scored lowest in. I seek sound all day. The radio is on. Podcasts and audiobooks accompany all walks 12-15k per day. Swim each day. Repeat auditory exercises in the evening, focusing on whatever is currently getting the lowest score. Work with my family to revise all the screenshots of what I got wrong (this might be every few days rather than daily). To do this they look at the screenshots of what I got wrong and speak those words quietly using the Live Listen option on my phone. This streams the phone mic to my CI. They quietly say the words (I block my good ear and look away to avoid lip-reading) and I say what I hear. To be honest, this regimen is an ideal, I don’t succeed every day, but this gives a sense of what my focus is on for now.
I’m sure this will evolve in time. I’m reading The Brain that Changes Itself and a lot of it resonates with my experiences since I developed hearing loss. #NH Rattle of the shopping trolley.
10/02/23
38 days after activation
Back to Berlin for another mapping, flying solo this time. I do my Hearoes exercises in the queue, which is a lot busier than usual. I drop back the loaner Nucleus 8 today.
My appointment isn’t until 3 so I have time to head into town and go to Zeit für Brot for my elevenses. They’re famous for their cinnamon rolls. I can’t go there after traumatic college experiences with Goldschlager 🤢, so it’s a chocolate scroll for me. I will be first in the queue tomorrow morning to get a selection for the folks at home before getting to the airport in time for my morning flight.
It’s a beautiful crisp spring day. All the kindergarteners are in the playground across the road, the last vestiges of a blanket of snow are melting on the ground. The giant TV tower looms in the distance. I’ve a few hours to kill before the appointment. I was finalising the Seeking Silence post on the plane and reading about my low mood last summer. I’m far from that now.
I buy a new bluetooth keyboard to make the writing process a little easier. A lot of this has been tapped out with thumbs on my phone. I’m in the lobby of our usual hotel in Alexanderplatz recombobulating and charging my phone before making my way to the suburbs for the rehab session.
For today’s session, we discuss the volume mismatch between my CI and the good ear, that my speech recognition is pretty high in quiet environments on programme 3, that the level of speech recognition drops in wind/near waves and that I still sometimes use the Charite scan programme for restaurants/one on one conversation in noisy environments. I flag that the tinnitus has become noticeable in silence, but that over all, from a tinnitus perspective, I no longer suffer from it. I get the sense that the tinnitus is silenced with louder input from the CI, but I can’t be certain about this.
We look at the letters that I’m mixing up on Hearoes e.g. M/N, F/SH and D/G at start or end of words. Overall we’re both very happy with progress.
Part of today’s session was a hearing test with a speaker rather than the usual headphones. With an ear plug and a noise cancelling ear defender on my right ear, it drove home the importance of the CI as insurance against any future hearing problems in my good ear. I was hearing tones down around 20dB (compared to around 95-105dB without the CI). I got 60% on a word recognition test with German numbers. She was nice to me saying that the ones that I got wrong were still half right. I struggled a little with the German reversed word order and found myself counting up ein, zwei, drei, vier, fünf, sechs, sieben, acht, neun and stopping at the one that matched what I had heard.
I leave with a couple of new maps. One based on my subjective responses to my hearing experience through the CI and another based on objective measures of how my cochlear nerve responds to stimulation. I leave with the latter activated as it sounds better from the initial experience in the office. There’s a fantastic sense of satisfaction walking away from the mapping session with better hearing that when you went in. There’s a serious sense of satiety from getting enough input and enjoyment of all the detail of the birds’ evening songs as I descend into the din of the U-Bahn station.
Back in the hotel room I write on my new keyboard and I drink in the sound. I went today with the aim of getting more volume and now I have it. I’m feeling much more balanced. I drink in the roar of the trains passing by my window in stereo and savour the satisfying clacking of the keyboard keys. I’ve inadvertently chosen Berlin’s loudest hotel, between the train tracks running in to Alexanderplatz and the Fire Station. There’s just time for a few tunes through the headphones before I meet an old friend for dinner.
11/02/23
39 days after activation
#NH sound of my footsteps in stereo again, particularly on the gritted paths of Berlin.
I get stuck into my auditory rehab exercises on the bus from the airport. With my new mapping I started with a swagger, but still make plenty of mistakes.
We walk the beach at Spanish Point that evening. The Atlantic on my right, my wife on the left. My good ear is masked by the sound of the waves. She says numbers between 1 and 100 quietly and I get lots right.
We tried turning off the subtitles and I survived without them. This is not sustained though- background noise on the TV and in the real world means that I still need them.
The batteries on my temporary N7 die while I’m deep into doing dinner (again). My daughter pops on the Kanso and it’s great to have my ear “free” again. I find myself tracing the outline of my ear absentmindedly with my finger over dinner.
12/02/23
40 days after activation
We drive for 40 minutes to a woodland trail. I’m never 100% convinced of woodland walks when the ocean and a range of beach walks are a shorter trip away. I’m dead wrong this time. The wonderful stereo sound of the initial gravel trail led to a leaf-lined path deeper in the forest. I could walk all day with the crunch of each footstep on the dried leaves.
15/02/23
43 days after activation
We went to Galway for the kids to spend their ill-gotten gains from busking. I played with them for some of the practice sessions and it was totally feasible without tinnitus/hyperacusis shutting it down. I ended up on LiveLine, a national phone-in talk show, today. I had written to them to complain about an ad from a big company that was essentially making a joke of hearing loss. I wanted to use the opportunity to raise awareness of sudden sensorineural hearing loss. I think I got the point across. It’s available here. The CI batteries gave their usual 5 minute warning while driving home, so I got a half hour tinnitus taster and a reminder of how lucky I am.
I’m at the Pine Barrens episode of the Sopranos. If I need to stream as much as possible, then it needs to be good stuff. I always loved this episode. It was extra special with Paulie and Christopher sounding like chipmonks.
17/02/23
45 days after activation
Another 4am rise and another brilliant weekend in Berlin ahead with the eldest this time. My new keyboard is paying dividends and I might get two blogs out this week.
I’m loving some elements of the auditory rehab. Not the bits where I can’t distinguish Ds and Gs, but all the streaming and the mountain of books that I’m getting through. I get to stream high quality stuff like this Patrick Freyne article directly into my brain. First with just the audio, then a second listen while I follow along with the text (it’s a noisy train). This takes me all the way from the airport in to Alexanderplatz. At first I don’t know if he’s reading the article himself or if it’s a robot- this gives you a sense of my current level of auditory fidelity- I am getting a basic level of audio that lets me understand words, but the subtleties of the voice’s timbre, inflection and the rise and fall of the cadence of speech eludes me still. Also, I need to be careful with the processor coming off. The one below was OK, but another CI user somehow got theirs stuck to the top of their oven and baked it 😬.
20/02/23
48 days after activation
I go to a family funeral. The noise levels are managable and my understanding of speech in noise is good for one on one conversations. There is still a lot of work to do. Group conversations are very tough, I’ll need to look at options for remote microphones for people further away in group conversation. It’s a reminder of how far I have to travel. I haven’t broken through the wall yet.
noisy silence 