noisy silence

So tinnitus sucks and I try to find ways to avoid it and to deal with what is unavoidable. 

I learn Vampire Weekend’s Harmony Hall as a challenge before I go back to the second therapy session. It’s a chance to play music with my kids. It’s a challenge playing with others- you need to place yourself so that you can hear the other instruments and there’s the tinnitus toll too. While I had used ear plugs and avoidance to deal with hyperacusis/noise sensitivity earlier in the process, this was not a sustainable option. I needed to find a way to incrementally get back to being better able to tolerate sound, including music.

There are lots of long walks. One is out as far as Dollymount Strand from our house. This was our traditional St. Stephen’s Day (Dec. 26th) walk with flasks of tea, hot chocolate and a good cache of Chocolate Kimberlies. A walk we didn’t do this year as there was something weird going on with my hearing. I wonder where I’ll be by the first anniversary? Right now I’m nearly out to “Mary Far Away”. So christened by my son when he was three. To distinguish the Mary Star of the Sea statue at Dollymount from “Mary Up the Road” who lived up the road. The walk is a chance to seek silence, which can be hard to find in Dublin.

Daily walks involved the use of two sets of noise-canceling earphones (dampening down background noise) and the phone set to only send audio to my beleaguered ear. This is a form of constraint induced sound therapy. I was not very hopeful. The original constraint induced research was carried out in the context of various brain injuries that led to one-sided paralysis. Patients went through intensive therapeutic sessions learning to use an affected limb while their good hand was in an oven mitt/sling. Theoretically this constraint allowed the formation of new neural pathways, a neuroplasticity response,  that could lead to some return of function. I don’t think this will work for me- I probably have dead hair cells in my inner ear. My brain is missing input. No amount of neuroplasticity will replace lost input. I don’t feel it’s a hopeless endeavor though. This process will potentially send some signal through the cochlear nerve and maintain some form of pathway to the auditory cortex. 

Some songs manage to punch through. Lyrics jump out of the auditory murk every now and again. I realise that most of the sense of “hearing” that I have in my left ear is a function of conductive hearing with sound crossing over to my good side. This happens more clearly in quiet conditions. With background noise it’s diminished. There is a little hearing. When the sound is all diverted left I get a sense of some high pitched sounds, if they’re loud. The tinny ting ting of a text message pierces through an unrecognised song. Some snare and cymbal sounds break through as a distorted and diminished version of themselves. If I lie in silence and put 98% of the sound on the left and 2% on the right, I get an approximation of stereo if the music has some high frequency elements, nothing compared to my former hearing though and useless in terms of recognising any words. I felt that my hearing might have receded. What I had in my original hearing test playlist mentioned in The Chamber has decreased. The consultant had mentioned the possibility of hearing gains with hyperbaric treatment that could reverse after the course is complete. I suppose whatever damage was done before getting treatment was not salvageable by flooding my inner ear with steroids or oxygen.

There are some places where I can’t avoid noise. I have a certain amount of noise dollars to spend each day. I try to spend them wisely. Work, obviously, gets a substantial proportion. After work there’s a quick sleep to replenish the account. Then there’s the wonderful ordinariness of the normal school week: the joy of homework, the tyranny of sandwiches, and everyone landing at the dinner table at approximately the same time. The day ends with a pre-bed time Young Sheldon with the kids: ear plug in, volume down, subtitles on, tinnitus roaring. Tinnitus Thursdays didn’t disappear when I stepped back to a four day week, but the time to rebalance definitely helped. 

Later on I will learn that my “seeking silence” is a form of avoidance and that advice to get out there and live is good advice. Isolation was a theme that had run through my many months’ experience of hearing loss. The isolation and shock of the initial days and the prospect of permanent hearing loss; the isolation of the hyperbaric chamber and separation from my family to access treatment in Galway; the continued isolation to dodge high circulating levels of COVID and avoid cutting the treatment course short; the isolation of sound therapy and seeking silence; and the social isolation of not being able to hear in most settings where there’s fun to be had. I wonder, am I seeking silence or is it the condition gradually changing my life and stripping me of some of my sources of joy. I’m conscious that avoidance behaviour may also give tinnitus too much space in my head allowing it to constrain my life.

Eight weeks of counseling helped soften the blow and eased me back into work with a safe space to discuss everything from significant concerns (what if the other side goes) to minor niggles (I’m getting sick of repeating this story- maybe I should write it down properly once and be done with it). We deal with deep dread, subtle positives and everything in between. When the counseling ends, I open up new avenues to focus on other than my hearing. I focus on the process of trying to get fixed or acceptance and getting on with it (or getting by).

It’s nearly 5 months in and I’m at the University of Limerick Creative Writing festival. I don’t think I would have gone if it wasn’t for my hearing loss. My four day week is helping with the adjustment and doing new things seems like a healthy coping strategy. I sat like a super-Poindexter in the front row with a degree of acceptance: “I’m going to hear what’s going on and not be held back. I accept that things have changed.” I had a literal front row seat to hear Lisa McInerney, Kevin Barry, Sarah Moore Fitzgerald, Kit de Waal, Donal Ryan, Louise Kennedy, Roddy Doyle, Sebastian Barry and Joseph O’Connor talk about their craft. 

Not everything can be heard though. There were soft talkers and mic dodgers, background noises and chatty attendees. Talking to an organiser after one of the sessions, I spoke up for myself:

“I can’t hear if the speakers don’t use the mics. I recently lost a lot of my hearing.” 

A half turn of the head to show the evidence. 

“I’ll just be sitting there missing it unfortunately.” 

This got me thinking about advocacy, accessibility and how people in positions of power can and should/must help. There are people out there with much bigger accessibility issues than me, but it made the issue more visible for me that day as a new entrant to the world of barriers that people with disabilities have to deal with. I thought about more visible accessibility issues like wheelchair ramps and started to get a sense of the sometimes invisible struggles of the Irish d/Deaf community.

The determination to get a cochlear implant (CI) grew and I began the labyrinthine process. I went to see an ENT consultant in a private clinic to get a sense of the lay of the land. I was doubtful that I would be able to access a CI in Ireland. I was not eligible for the public programme as I could hear in one ear; the severe tinnitus and quality of life effects were not taken into consideration. They indicated that previous attempts to do private CI surgery in Ireland were limited due to constraints with the rehab process in the sole publicly-funded unit that seemed to be stretched beyond capacity. I’m in 100% agreement that children and double-sided deaf patients get prioritised. The treatment abroad scheme has not been fruitful in the past apparently and there was uncertainty about their ability to refer me to that scheme. There might be potential to get the surgery privately and travel to the UK for the rehabilitation process. They say that they’ll look at potential options and get back to me. It may be feasible to get into a UK clinic or research project that will provide the necessary sound mapping and auditory rehabilitation. We’re happy leaving the consultation. Our questions were all answered. A CI was the best option for me- CROS and BAHA were not going to restore binaural hearing or deal with the tinnitus. Surgical complication rates were rare, but possible. This was a routine procedure for experienced surgeons- the nearby critical structures that crowd the surgical route into the inner ear were carefully avoided.

Results were not guaranteed- hearing success was variable and the tinnnitus may not improve, but my chances of success were better than my chances of having a bad outcome. We had no doubts that a CI was the way to go for me.

We sat in the Botanic Gardens afterwards. The sun shone and the squirrels scratched around the bench for crumbs. There was a potential pathway. It might be a long and winding one and we might have to choose a favourite child who will get to go to college after we’ve paid for it all.

The initial responses are not encouraging. No joy on any accessible route to rehabilitation in the UK. No potential to apply through the treatment abroad scheme due to previous refusals. Time to start pricing the UK?

I read about the criteria for the treatment abroad scheme (TAS). I could not see how I could be unequivocally ruled ineligible. The scheme had been investigated by the Ombudsman in 2017 due complaints from rejected applicants. The Ombudsman’s report was incredibly useful and is a good starting point for anyone in a similar position. In essence this scheme is derived from an EU directive and it provides for equality of access to treatments which may not be available to all citizens of EU member states. Essentially, if a German citizen in my situation could get a CI, I should have the same level of access, provided it is not available to me in Ireland. The TAS should not be confused with the Cross Border Treatment directive. This is designed to enable access to treatments that are available in Ireland, but cannot be accessed in a timely manner. The cross border scheme has a funding cap of somewhere near €45,000, which should cover the cost of a CI if it is accessed through a public health system. As a self-pay patient, you could end up paying private prices, which may exceed this threshold.

A friend has used the treatment abroad scheme before. She tells me what she can remember about it and we go on to discuss the importance of advocacy and an example where a doctor fought for, and won, the right to access fertility preserving treatment in advance of her cancer treatment. This had set a precedent. It is now routine for women and men to be able to access fertility-preserving treatment to mitigate the side effects of chemotherapy or therapeutic radiation. I’m also aware of the scheme being used for newborns who have extreme pulmonary issues. Select cases are flown to The Karolinska Institute in Sweden to access life-saving ECMO treatment that bypasses their lungs and gives them the best chance of recovery. I always thought that this was an amazing demonstration of humanity- a baby will possible die for want of this ultra-specialist treatment that is not available in a country as small as Ireland. An urgent referral process is kicked off by consultant neonatologists; the Swedish team review the case and fly to Ireland, getting a blue-light escort to the hospital; surgery is carried out to place the necessary vascular access and bypass the baby’s lungs with a machine that will oxygenate the baby’s blood; the parents fly with or after the baby, with passports or documentation sorted by social workers if necessary; the baby and the parents are cared for by the Swedish team; the baby hopefully returns as a healthy rosy puddin with recovered lungs. This is a carefully choreographed dance of life and death that probably involves a hundred different dancers, with the entire thing paid for (at Swedish public patient costs) by the Irish health system. It amazes me. I think it is one of the high points of human society how we can provide such cutting edge care for someone so small and vulnerable, and bureaucracy does not stop it.

I’m no ICU baby, but I will see if this incredible scheme can help me. I need to see what’s available in other EU countries to patients in my situation. The Facebook forums provide a few suggestions, but not a complete list. I ran a search something like this in Pubmed and wrote to the corresponding authors for relevant research papers. This is usually the senior author who takes responsibility for the research. It looked like France, Germany, Switzerland, Spain, and possibly Denmark were options. I was veering towards Germany. I had some German. I met my wife there when we were both students working in the factories, offices and kitchens of Munich in 1998. Most importantly, the response from the hospital that I ended up attending was the most positive, and hopeful. It was the first time that anyone emphatically said “We can help you”.

Spoiler alert- I’m writing this as I fly to Berlin for my fourth mapping session, listening to the greatest Irish emigration song (The Sawdoctors- N17) and flying over the windmills and massive industrial smoke stacks of the Ruhr valley, the smoke drifting east. Incidentally, the second best emigration song also came from Tuam  (DK Gavan- The Rocky Road to Dublin). Immigration is front and centre in the news at the moment with the far right trying to make the most of a housing/accommodation crisis. I’ve learned a lot from the museums and WW2 bunker tour guides in Berlin over the past few months. It’s sad to see the same old tactics and same old racist tropes being rolled out again. I’m able to get this treatment as a result of the post-war peace and cooperation project of the EU. I’m not discriminated against. I’m lucky. I hope that there’s a groundswell of action from ordinary people in the coming weeks to drive the facists and racists back underground. 

Returning to the chronology- July 2022. It has been a strange week. I brought a printer/scanner with me on our weeks’ holidays. I am on a tight timeline to submit an application to the treatment abroad scheme. I have to return forms within two weeks of being assessed by the ENT consultant who is referring me. There was a significant amount of documentation to print, fill and scan as a backup of what was submitted. There was a lot of back and forth organising the required consultant referral, but I got there in the end. I submitted the cover letter, referral form, insurance refusal, hearing tests and the supporting document below which I had compiled to make it easier for the medical reviewer to get a sense of the extent of the supporting literature around cochlear implantation as a treatment for single sided deafness and severe tinnitus. I was super cautious and scanned everything in case the registered post never got there.

My mood was low, despite my privilege and all the good things in life. We were at a music festival where the children went to a traditional Irish music summer school, the famous Willie Clancy festival in West Clare. I was beyond delighted that they are all interested and engaged in music. They’ve brought their friends and they are super engaged with zero arm-twisting, practicing for hours together as a band with the draw of a potential cash haul from busking. I test the limits of my tinnitus by going to various tin whistle and uileann pipe recitals. I’m far from silence. My head doesn’t explode.