I’m writing this on December 26th 2023, St. Stephen’s Day in Ireland. It is two years to the day since I woke up with no hearing in my left ear. On Christmas Night 2021 I played some songs with my daughter- the last one was a guitar and piano version of In the Bleak Midwinter. After the kids went to bed we watched a couple of the Royle Family Christmas specials. The theme tune, Half the World Away by Oasis, was the last song I heard in stereo.
There was no sadness waking up on the anniversary. I’m in a happy place, considering all the progress that I’ve made since the CI was activated at the start of this year. I check in with the various SSD and Cochlear Implant Facebook groups. I’m always learning and I’m also keen to pass on anything that I can that might help someone else. I have found a lot of meaning throughout this process from helping other people in a similar situation.
So on St. Stephen’s day we go through our annual routine for this part of the year, but with stereo hearing this year- potato cakes for breakfast, playing with Santa’s gifts, a long seaside walk, movies and the left-overs Christmas dinner #2. All of this with the knowledge that I’ve gotten through what I thought was a hopeless situation, with years of progress yet to come. This long post takes you through the six months up to this point with a significant focus on music and more recent progress with my CI.
01/06/23
I’m pretty flaked out after yesterday’s over and back to Berlin. Up at 4 and back to bed for 12. The day went well, they’re happy with my progress and my word recognition testing went as well as can be expected in a second language. I got 70% on the single word testing and 54% on the speech in noise testing. Honestly, I could hear the words, but didn’t recognise a lot of them and just repeated them phonetically. keift- yep, frups- yep, creiss- yep. I was happy to be tested, but it would be nice to know my results with an English test. I know myself what my word recognition is like in optimal conditions. It is a long time since I’ve needed to go to a hardcopy book to pick up words or meanings that I missed with the audiobook.
The trip involved a quick dash to the CI centre on the way to the hospital to pick up my rechargeable batteries. I charge two of the new batteries overnight. I ordered three large capacity batteries and one smaller battery for when I want less weight on my ear or when I want to add in a receiver device that sits between the battery and the processor for meetings at work or other complex listening environments. I try out the smaller one. It’s a huge difference from the battery adaptor for the disposable batteries, probably about 40% of the size, while the larger capacity rechargeables clock in at about 80%. It feels great to decrease the footprint of the device. I put on over-ear headphones and the battery casing doesn’t press in behind my ear at the scar site. I have the house to myself (last day before the kids’ summer holidays begin). I put on Frightened Rabbit and experiment with the different maps and popping the processor into the headphone cup.
Music isn’t perfect, but it’s improving all the time and the transition from single sided listening to stereo when fiddling with the processor and headphones demonstrates the clear superiority of the latter. I go back to the eighties and This Must be the Place by Talking Heads. There’s something about the production and recording that it just sounds great, the bass and snare drums, the strolling bassline, David Byrne’s vocals, the keyboard fills (the higher pitch part faring better than the lower pitched flute sound), the subtle xylophone. All great. The multiple voices sound muffled or slightly distorted, but overall it’s a delight, and I know that my brain will fix the distortion in time.
04/06/23
It’s the first heatwave for a June bank holiday since 1995 according to Preacher, the surf instructor and Sage of Spanish Point as we come out from the Sunday morning swim. I was doing my Junior Cert during that heatwave and it’s my eldest’s turn now. She’s left back at the house doing some last minute prep for the first exams on Wednesday.
It was my second tinnitus-free swim in stereo and it was glorious. I used the Cochlear aqua kit for the first time yesterday. When I was choosing the accessories for my CI, swimming wasn’t a priority, but I got it as one of my included extras as I anticipated kayaking or surfing with it at some point. It felt like an extravagance to use it for a daily solo swim, but yesterday was the right time when we would all be in the water together. It takes faith to put your only way of accessing sound into a little rubbery case and jump into the Atlantic, but it was well worth it. Apart from the joy of being able to hear my family in the water (I’m relatively deaf on land and with added earplugs at sea, I’m hearing very little), there was the simple pleasure of hearing the water with each swim stroke. It’s worth noting that I wouldn’t be able to use the aqua kit if I had chosen to go with disposable batteries instead of rechargeable ones as my routine source of power.
This weekend also involves some playing with my new Roger On and Roger Select. I got these as the performance is supposed to be better than the MiniMic 2+ that comes with Cochlear CIs. This video gives a great comparison of the two. I’m lucky that my employer provided these in order to facilitate me in meetings and other challenging listening situations. I practice with these so that challenging hearing environments at work are easier.
12/06/23
Just back from a scorcher of a weekend in Berlin with my super little traveling companion. We cycled all over the city as I got used to my new louder map. I missed the last day of the Tinnitus Research Initiative conference this week to come here on Friday.
I got a few chances during the trip to get my talk from the conference transcribed and up as a blog post. I was keen to get it up shortly after the conference while people were still in tinnitus mode, with that dose of post-conference optimism. Various people got in touch sharing their experiences of tinnitus. It’s quite harrowing to see the impact that tinnitus can have on people’s lives. People seriously consider selling their house to access treatments that might help. It’s crappy, but reassuring that my description of reactive tinnitus resonates with a lot of other people. I was not imagining it and it’s not just hyperacusis.
23/06/23
I’ve been busy of late with limited time for writing. I’m watching the Foo Fighters at Glastonbury. It’s a warm summer’s evening. The kids are out in the garden screaming on the bouncy castle that’s rented for the weekend for my daughter’s birthday. My son had half his class over for a test drive earlier. It was noisy and my hearing played no part in the afternoon- they could make as much noise as they liked. My job was to pick away at the banjo and watch them to avoid a hospital trip for me or some other parent.
Glastonbury is streaming to my CI via a Roger Select device. This is plugged into the optical output of my satellite box and it’s coming down a corridor and through a wall to be picked up by a little receiver that sits between my battery and the CI processor. The drums sound great. The bass drum in particular. It has depth. If there’s lots of simultaneous stuff, the sound still turns to mush though.
29/06/23
I don’t constantly fear losing my hearing in my good ear, but it is a possibility. A consequence of this is my immersion in music. This is manifest in listening to music again, playing at home or in sessions and a drop-of-the-hat willingness to go to gigs. I refuse to have regrets about making good use of my natural hearing if anything ever happens to it. So we find ourselves at a Steve Earle gig in Vicar St. It’s a solo acoustic show and a lot gets through clearly. I use the Roger On microphone clipped to my T-Shirt. This transmits to a receiver that sits between the CI processor and the battery. I experiment with maps and volumes. In the end I completely mute the CI mics and rely on the input from the Roger On. It is joyous to witness music slowly opening up to me. It is beautiful. Transcendental Blues shimmers, shining with jangly 12-string stereo magic. I Feel Alright resonates, in many ways. Solo acoustic works well. I do have to contend with crowd noise being picked up by the Roger On. I need to get cracking advocating for Auracast to beam the sound desk output straight to my head, making live gigs much more accessible.
07/07/23
It’s the end of a music-heavy week. We’re in West Clare again for the Willie Clancy Summer School, a week of traditional Irish music lessons and sessions. The kids are in fiddle and concertina lessons and it was delightful, even if the weather didn’t totally play ball.
After a week of chauffeuring, catering and cleaning, I finally have the house to myself and stick on Siamese Dream by the Smashing Pumpkins. I know every twist and turn of each of these songs, making it all the easier for my brain to make sense of this new audio input.
A few moments from the week stuck out. We had our kid’s friends over for a sleepover and it was brilliant to be able to let them make as much noise as they wanted, unimpeded by me. I think of this week last year when I was getting my application for the Treatment Abroad Scheme submitted and the tinnitus was raging.
I experimented with the Roger On mic at some of the music sessions this week. I found that it gave extra input that the internal mics in the N8 could not deliver. I could also ask the folks in the session if they’d put the mic on the table in front of them, if I could get close enough. This gave me decent, but far from perfect input on the left. My brain is still learning to mash the two signals together, but, sans tinnitus, this was a much better experience than last year. My slowly developing hearing skills struggled with lots of instruments which would drop what I was hearing into sonic mush, particularly with the loud background sound level in the various pubs the sessions were in. In quieter afternoon sessions where there were fewer instruments, the signal came through clearly and melded with my good ear. Some instruments punched through better than others.
Another revelation has been the use of the Roger Select to take the audio signal from our TV’s optical output and send it directly to my CI. This has transformed watching TV. Subtitles are gone (except where other people need them). I can hear the faintest sounds and stereo effects. Footsteps, background noises, water, crickets, whispers are all crystal clear. Again, it’s about learning the limits of the CI and how sometimes you need an adaptation to make life easier. There is definitely a lot to be said for learning to hear with the CI alone, but you also need to be aware of the technical limitations of two little microphones picking up sound across a room from a TV speaker and accept that accessibility devices like a TV streamer can enhance your experience and make life easier. Listening to music from the TV now lets me balance the room volume with what I’m getting via the CI, giving me clear, balanced sound with none of the ambient noise of the kids, the dog and life in general going into the CI. I realise that gigs would be much better with this kind of setup, killing the annoying crowd noise and letting my brain focus on the music.
Playing music with the kids has also been a joy this week. They’re a great little band, managing bass lines, rhythm and basic chords for some bluegrass staples like Cripple Creek and Foggy Mountain Breakdown. My own banjo picking skills are coming along, slowly- my neuroplasticity side project is progressing just like my main job of learning to hear well again.
The only slight wrinkle in the week was the lack of an Aquakit. I returned one that leaked on the third use and have yet to receive any feedback from Cochlear. There were a couple of times in the week where I would have liked to have had better hearing at a water activity centre or when out in big waves with the kids (under my wetsuit hood of course- I don’t want to be walking the beaches looking for it). This affects my confidence in the Aquakit. I only have one processor and the thought of it taking a saltwater bath horrifies me.
We’re going to another gig next week in Dublin’s Iveagh Gardens. I’ve emailed the promoter to see what accessibility options are for people with hearing loss. If people don’t start asking for technologies like Auracast, they’ll never arrive. Let’s see what comes back. I’m not expecting much, but I have a friend with lots of contacts in the sound engineering scene and from some preliminary work that we’ve done together, we’re pretty sure that where there’s a will, there’s a way. We’re also pretty sure that no one should say they don’t have any available outputs on the sound desk.
11/07/23
We went to see Wes Anderson’s Asteroid City. I emailed the Cinema beforehand to see what accessibility options they had for people with hearing loss. Much to my surprise, I get a fantastic, detailed reply from someone WITH A COCHLEAR IMPLANT! It’s great to get in touch with other people in a similar situation and I hope that there will be some advocacy outputs from combined efforts to make the arts (and gigs in particular) more accessible for people with hearing loss. The film was great and this was one of the few Telecoil/hearing loop experiences to date where I got great sound quality. I think a future section of Noisy Silence could detail the quality of accessibility/hearing loop systems in various venues and advocacy to improve sound quality, because many of them have been terrible or simply a clicking, staticky mess so far.
19/07/23
Up at 4 for my 9th mapping visit to Berlin. It’s a day trip on my own this time. Someone in Aer Lingus decided that it was a good idea to do some routine maintenance on a difficult to access part just as we boarded. We sit on the plane for over two hours before being told that we need to change planes. That’s my appointment gone. The rehab centre were aware that I was delayed, but I don’t know what they can do for me if I completely miss my appointment. To get on the replacement plane or not?
In the end my amazing therapist saved the day, moving the appointment to the end of her working day, just when I thought the day was lost. There’s time for a quick trip to Zeit Für Brot when I land.
At the airport gate LCD Soundsystem’s Someone Great wins the prize as the most intact sounding song with the CI. Hopefully, it’s a good omen for future progress with music.
Over the following weeks our summer holidays are remarkable for how my hearing loss didn’t feature at all. I just put on the CI every morning and forgot about it.
25/08/23
After coming home from holidays mild vertigo sends me back to my local hospital (fortunately with an ENT department and our national CI centre).
I was in two minds about going in, but the thoroughness of my work up reassures me that I was right. It was a relief to get an audiogram and to know that my good ear is fine and that this isn’t a recurrence of whatever affected my hearing initially. Through the day and the assessment process in the ER, I repeated my story a few times and the previous recommendations from my initial ENT care for my episode of sudden sensorineural hearing loss and from the CI team: if you have any symptoms of concern, go see an ENT specialist for urgent assessment and treatment if required.
I’m privileged that our health system facilitates rapid access when needed. I bypassed the GP and potential delays to go straight to the ER and went through the normal wait to be triaged, seen by the medical team and referred for same day audiogram and ENT review. The cost for attending ER without a GP referral is €100. Pretty good value. It’s hard not to wonder what the outcome would have been if I went to this hospital straight away with my sudden hearing loss on day one.
My brush with a potential recurrence of SSNHL sends me out to a series of gigs. In a few months I see The Sawdoctors, Franz Ferdinand, Boy Genius, Nickel Creek, The Arctic Monkeys, Lisa O’Neill, The Mary Wallopers, Lankum and Damien Dempsey. Music is sounding better and better. I get talking to sound engineers at some of the gigs and the general consensus is that, where the artist/promoter gives permission, there are no good reasons not to let me connect to the sound desk to get something like what I have at home with the TV streamer. However, without advance planning, it’s difficult to arrange this at short notice.
31/08/23
I’m at a three day work conference for a serious road test of the CI. The night before there was some jitters triggered by a lost battery, but it probably relates more to frustration and anxiety about my hearing abilities.
The actual experience was fantastic. My hearing never impeded me, even in very challenging listening environments e.g. conversation with someone with a strong accent in a loud social setting on my CI side. The auditory fatigue that tinged the year after my initial hearing loss wasn’t there with the CI.
06/09/23
It’s strange walking out of the CI centre after rehab session number 10. Graduation day. Moving on to the next phase of the process.
There’s a significant feeling of relief with progress to date and being able to access this healthcare. I stick Heartbeats by Jose Gonzalez on over-ear headphones and sit in a sunny beer garden drinking Augustiner Hell. Job done. For this phase. It’s bittersweet to think about the trips to Berlin slowing and ultimately stopping, but I am delighted with the lost hearing that I have found again because of this process. The testing in the CI centre confirms what I know myself, the CI plus my normal hearing outperforms what I can do with one good ear and bad tinnitus. I sit at the airport gate again marvelling at my improved hearing from the latest mapping session. Lost Weekend by Lloyd Cole and the Commotions, and the Killing Moon by Echo and the Bunnymen both sound great.
24/09/23
My auditory training has moved on from testing in silence. I now do all the exercises with background noise and my results are not as impressive as usual. That’s what this process is- slow incremental improvements over time. The testing is also getting trickier, with much more subtle differences between tested words/sounds.
Sunday is one of the few times I get to sit in silence, put on headphones and listen to some music while reading the papers. I Bleed by the pixies- beautiful Bassline slugging it out, Stereo by Pavement- how perfect, bouncing between left and right channels, volume a little down on the left, vocals on both sides, but higher frequencies more pronounced through the CI, rhythm guitar on the left sounds different from the other part on the right, but I can hear it- it’s an alternate lo-fi version, but it doesn’t significantly detract from the joy of music for me. It’s still a wonder to be able to put on music and not have my tinnitus go bananas. Lua by Bright Eyes sounds delicate but distorted. The vocals are clearer than they were a few months back and the rhythm of the solitary guitar is clearly centered in my head. I think my brain is normalising the sound from the CI and blending it with my normal hearing side, so that it sounds centred. It’s getting better at this with more exposure. Half Right by Heatmiser sounds expansive and magnificent. Elliott Smith’s double tracked vocals on Division Day are becoming better matched left and right. The rhythm track is clear and the bass line sounds great. Subtle vocal harmonies are there on both sides. The Scan programme is great when it detects music and optimizes the sound, but sometimes there’s a time lag before this kicks in. It would be great to be able to manually select what you expect the processor to do.
15/09/23
I go to a gig (Jinx Lennon) with a dear old friend. I have been in touch with Jinx on Twitter, explaining my background, and bring along my Roger Select and various connection options for the sound desk. The sound engineer is super helpful. He plugs me in via one of the headphone outputs and I get crisp clean sound direct from the desk. I turn off the CI mics (and the sometimes overwhelming crowd noise). It sounds glorious. There are still some limitations in terms of sound quality via the CI, but my brain does a pretty good job of adding up the two inputs to produce more than the sum of the parts. This is what accessibility looks like. I need to make this the norm, so people with hearing loss don’t go to gigs wondering whether or not they’ll be able to get the best possible sound for them. I’ll always be grateful to Jinx Lennon for breaking this seal when a few bands and promoters before him just used the “nobody plugs into the sound desk” mantra.
30/09/23
I try to get organised for upcoming gigs and reach out to Steve ‘n’ Seagulls and CMAT via Twitter. Both get back to me straight away. In my experience to date, you will get two kinds of reaction when you make these requests. The more common is: how can we help? Unfortunately, the response is sometimes: how can I find a quick excuse to justify not helping. As this blog is founded on positivity, I won’t be documenting the bands or promoters who went to a lot of effort to be unhelpful. Instead I’ll talk in detail about those who helped me (and buy merchandise at these gigs).
02/11/22
My wife and I head into town to see Steve ‘n’ Seagulls at the Academy. There are three phases to the evening: anxiety, relief and amazement. I’m anxious at the start of the evening, because I really don’t know how, or if, this will work out. This anxiety is relieved when the sound engineer is incredibly helpful. He also has a spare headphone jack that connects to my Roger Select. He suggests getting a female XLR to 3.5mm cable as this would open up more options for him in terms of giving me my own output with dedicated volume and EQ controls. The gig itself is incredible. Sonic magnificence from all-singing, all-dancing, virtuoso musicians. Beautiful bluegrass covers that will fix whatever ails you.
03/11/23
Tonight it’s a trad session in Friel’s in Miltown Malbay. The more sound stimulation the better.
02/12/23
It’s my second time this week seeing CMAT at the Olympia. I got in touch with the venue and CMAT’s management beforehand. I go into the gigs with contact details for someone who looks after accessibility. We try a couple of options. The first is a commercial accessibility system that has just been installed. It’s like Auracast, but it involves using your phone to receive the sound via the venue’s WIFI, whereas Auracast is transmitted directly to the CI. Unfortunately, there is significant latency by the time I send this signal from my phone to the CI. So much, that it’s unusable for me, but the sound engineer was willing to look at potential solutions and I gave him my newly-acquired XLR cable attached to my Minimic 2+. Unlike the Roger Select device, the Minimic 2+ works without any additional receiver. I get beautiful, clear sound for the support act, but a switch of sound desks for the main act leaves me without a signal. The sound engineer tries to rectify this, but we are unsuccessful. Afterwards, he says that he’ll get it sorted if I can wrangle tickets for one of the other nights. Having haunted the Ticketmaster app for resale tickets, I get lucky and my wife and I are back chatting to the engineer before the Saturday night gig. He has sorted the output and the sound was spectacular relative to the first gig- like night and day. This was my gig of the year and I’ll be forever grateful to The Olympia and Team CMAT for making this gig accessible.
We’re beside the wheelchair accessibility area at the gig. This takes the format of a small platform that the person in a wheelchair is on. They raise the platform to a comfortable height and have no problem seeing over the people in front of them. This looks like a venue that takes accessibility seriously. As we talk to the engineer afterwards he’s thinking on his feet about how our approach can be scaled up to help more people with hearing loss.
After this gig, I call a national talkshow to discuss the impact of single sided deafness, the joy of finding lost sound and accessibility at gigs. This is prompted by an interview that they did with Paul Simon after the death of Shane McGowan in which he described the impact of his sudden hearing loss on his ability to play music live. The podcast is here My part starts at 37:15.
15/12/23
I’m in the Zoologischer Gardens train station on my way back to meet my family in Alexanderplatz following my one year follow-up appointment at Charite and a quick trip to get the best falafel in Berlin.
This blog is coming back to me a lot this week- I got tagged on Facebook by a UK Doctor who also experienced sudden hearing loss and extreme vestibular (balance) symptoms. Her fantastic blog is documenting her experiences and it was great to hear that this overly long therapeutic writing exercise is out there helping people. It was also funny to hear from one of the Charite Team that they have international patients who have been reading it too.
My phone is taking me on a sonic mystery tour with my new post-mapping hearing. It was a great appointment, with a quick test of my word recognition and a detailed mapping. I’ll never cease to be amazed at walking away from an appointment with better hearing. I also left with a dedicated music programme that removes all processing and lets my brain do the work to hear the music in all its detail. The songs are an eclectic mix. I don’t know how Journey got in there, but as usual 80s production values suit the CI. The person who tested me and did my mapping extolled the virtues of Kraftwerk for CI recipients- that German precision combined with sparse instrumentation and repetitive rhythms makes for a great sounding CI music.
22/12/23
We have a house party for some neighbours and the children’s friends. As I’m keen for the kids to grow up in a musical household, we have a small band setup in the kitchen in anticipation of any session that might or might not happen. Hearing in a busy party setting with background music is a challenge for anyone, but I don’t struggle with the CI. Me and one of the other dads accompany some of the kids singing Highway to Hell by AC/DC and that kicks off a session that lasts till the small hours. The first song sung by one of the adults was Half the World Away by Oasis. As we drew the songs to a close at about three, my daughter sang In the Bleak Midwinter. One year on from the CI activation I had come full circle and could hear these two very important songs in stereo again.
noisy silence 