5. The Sound of Silence

Looming Cochlear Implant operation...

I am writing this one, partly for therapeutic reasons to help me untangle my thoughts, partly to update on progress, and partly because many kind people have asked how I am and what’s next, and it’s just less tiring to link you all to here than repeat the same again and again. Sorry.

The last week has been unexpectedly stressful, and I’m still picking my way through various bits and pieces, so please bear with me.

ExCoL Commitment

Last week, Wednesday 17th April, was a 9-5 all day induction with Exeter UNESCO City of Literature, a charity I am honoured and very excited about being a Trustee for. The charity exists as part of the wider UNESCO Cities of Literature network, which seeks the advancement of education and the arts, so is right up my street. It has been great to build on my educational work and bring together lots of complementary interests, such as the Bibliotherapy course I did at Exeter College over winter, my trusteeship at the Devon and Exeter Institution, and my Advisory Board work at the UCL Centre for Inclusive Education. Naturally, I wanted to make a good first impression, so it was a long day. First contact with new people and the cognitive stresses of adapting to new voices etc was quite tiring. Well worth it, but still exhausting as I believe in giving everything. I don’t have a half-setting.

Consultant Opinions

We then drove for 4ish hrs to Alice’s parents, getting there gone 10pm, as we needed to be in place for the next day’s 2hr drive down to the Royal National Orthopaedic Hospital for an appointment regarding leg amputations. We were hoping this was just a routine step on the path to amputation, but this appointment did not go well. The surgeon almost immediately stated that he did not want to amputate due to the quality and volume of flesh on my lower legs, the potential healing issues, and concerns over whether the ‘stump’ would be able to tolerate the pressures of a prosthetic socket.

I had at the very darkest and quietest recesses of my mind worried about this, and never seriously entertained it, but it was still a shock. I won’t go into huge detail now, as that’s another topic for another time, but over the last few months I have essentially restructured my entire identity and future around being an amputee and the potential mobility improvements it will offer me. To have those revisited dreams stifled is something I’m still processing. As other writers better than I have claimed, “it’s the hope that kills you.”

Anyhow, in fairness, the surgeon has referred us onto a colleague Rehabilitation Consultant who is much more experienced in dealing with ‘difficult' case’ prostheses, and may offer an alternative opinion or solution. Original surgeon is happy to defer to this more experienced colleague. So, that is who I will need to argue strenuously with, when the appointment comes through.

The reality is I cannot afford to spend any emotional stress or focus on the ‘amputation op’ at this time, when I have the ‘cochlear implant op’ imminently. So put it away in a box and come back to it when I have the available capacity. Priorities.

Conference Speech

After the disappointing appointment we drove 4hrs back to Exeter in time for the 7pm Study Group on Genetics in Diabetes conference dinner - where I was privileged to be able to speak to the 200 attendees on genetics, rare disease, and the powers of effective science communication. Exeter is privileged to be one of the absolute leading centres for diabetic genetics research, globally, largely as a result of luminaries such as Professors Hattersley and Shepherd, so it was a very great privilege to be asked to speak here. I am big fans of both of them, personally and professionally. They heard via judicious SoMe stalking that the amputation appt had not gone well, and very thoughtfully asked if I would like to bail and skip the conference speech in favour of a quiet night in. I certainly did want to, but I made a commitment. My feelings are temporary. My word is not. I’m pleased to say the speech seemed to go quite well, and there was some very kind feedback given to the organisers.

Consequences

So, a busy 2 days. About 12hrs of driving, an all-day workshop, an unexpectedly troubling appointment, and a conference speech and dinner. I suppose it was almost inevitable to be a bit under the weather after this, and that inclement weather did indeed hit me on Monday night with a bit of a sore throat. Usually, this would be fine. But if you have a serious cough or cold, surgeons are liable to postpone surgery and, to be frank, I’m not fucking delaying any more. So, cue the Berocca, extensive application of Islay woollen mill knitwear, committed hibernation, and lots of fluids. Tactic seems to have worked, and I am almost normal in time for the op (tomorrow, at time of publication). Final work emails have been dispatched. Out of Office auto-reply set. Bristol tomorrow for the operation.

Next Steps

On the road for 8:30am, with an 11am check-in at hospital. They’ll provide me with their finest general anaesthetic and then compassionately drill into my skull, inserting the electrode array into the cochlear of my inner ear. They tidy tings up, leaving the external port in place, wrap your head up in bandages, and then kick you out. Well, kick you into the nearest bed for one night. Then home.

Rehab is 1-4 weeks recovery. Wooziness, fatigue, headache, swelling. After 3-4 weeks they give you your external processor (the large outside bit which looks like a hearing aid and connects via a magnet to the port now on the side of your head, and switch you on. There begins the process of learning how to hear again.

New Sounds

“It takes time and training to learn to interpret the signals received from a cochlear implant. Within 3 to 6 months of use, most people with cochlear implants make considerable gains in understanding speech.”

I was talking to my friend Caspar recently, as he hoped post-op I would be back into full hearing (he’s looking for a lead guitarist and knows I am easily pliable with very modest amounts of alcohol- curiously, my musical skills increase in line with my inebriation). Sadly, I had to dispel such notions. Cochlear implant sound, to the user, is a world of difference away from hearing aid sound.

If you can imagine, hearing aids are essentially fancy amplifiers. They amplify certain frequencies and your residual hearing, the organic apparatus you’re born with, handle the rest. Cochlear implants are very different in that they don’t give ‘you’ sound. They convert sound picked up on the microphone into what the technology hopes is an appropriate electrical impulse, and mainlines that directly into the auditory nerve. Your brain has to then interpret these signals and hope they are similar to the signals your ‘real’ hearing transmits. Needless to say, there’s a big difference. But the brain is an incredible thing and neuroplasticity and some effort go a long way to making those new signals recognisable and reliable representations of sound, in time.

I’m not concerned by the op - usual tiny tiny surgical and anaesthetic risks- nor the very tiny tiny risks of CI surgery like facial paralysis, or a minutely misplaced electrode requiring redoing. I am concerned, though, by the fact after the op it is likely I will have no hearing whatsoever on that side. At least, without the CI unit being plugged in. This means I will be totally dependent on my other (right) ear, which has a hearing aid but is profoundly deaf. As anyone who has ever had SSD (single-sided deafness) will tell you, losing one ear is more than losing 50% of your hearing. They work together, cognitively. So essentially, if you see me during the month of May, assume I’m completely deaf.

Nostalgic Tunes

The other thing which concerns me, though, is music. Every CI user is different, and has a different relationship with music, just as those with ‘normal’ hearing do, but CI hearing as I’ve explained is drastically different from natural organic hearing. I realised over this last week that the songs I listen to now, it will be the last time I ever listen to them. At least, with ‘my’ hearing. So I’ve been trying to revisit all of my old favourites, all genres, and appreciate all the wonderful music I have enjoyed. Because when I come back to them in the next few months they might be unrecognisable. Some music I may like more. Some I will like less. Maybe I won’t really ‘do’ music anymore. I don’t know. Nobody does. See how my brain adapts.

It’s a sobering and bittersweet thought, though. I have always been an audiophile. From about 12 through until 16 or 17 music, and guitar, was my #1 focus and enjoyment in life (replaced by cycling soon after). And I’ve been a committed music nerd since, 8 guitars and counting.

Life moves on, though. Certainly my deteriorating hearing and my stiffening Right hand (another topic, another time) have had a hugely negative affect on my guitar-playing and music enjoyment over the last few years, but these are obstacles to be overcome. Problems to be managed, which I’ve mostly been doing. My ‘new’ hearing, as essential as it is now for basic communication and speech understanding, may be an insurmountable obstacle. Connection with people vs connection with music.

Will I still be Tom if I can’t argue with music friends like Caspar how the KLF are the sampling heroes we needed, or how Frusciante is heir apparent to Hendrix, or how more should be made of Kraftwerk’s influence on the 1978-1982 golden age of British synth pop? What will my religion be if I can no longer worship Mark Knopfler? These are profound, weighty questions.

Thank you for reading.

I’ll be dipping in and out of work email(s) and Social Media over the coming few weeks, but make no guarantee you will receive a timely (or any) reply. If it’s urgent, feel free to WhatsApp. If you don’t have my mobile number, chances are you don’t know me well enough to claim your issue is urgent.

Onwards.