Surfacing
ONE DAY IN THE SUMMER of 2009, I went for my regular appointment with the audiologist Jacqui Sheldrake. But this time, instead of just taking the standard audiogram and adjusting the amplification on my hearing aids, she ran a different series of tests. This wasn’t just the usual headset-on, clicker-in-hand pure-tone audiometry, this was bangs and tuning forks and things against the side of my head.
When she’d finished, Jacqui sat back. Behind her was a fireplace with a dark Edwardian mantelpiece and emerald tiling round the edge. Once, the mantelpiece had displayed only a few items, but over the years the silver-framed family photographs had been joined by a small tribal grouping of international travel ornaments, pencil sharpeners and defunct phone chargers.
‘You should go to France,’ she said.
‘France?’ I said.
‘I think,’ she said, picking her way across each word with even more care than usual, ‘That what we’re looking at here is otosclerosis.’
I shook my head. Whatever it was, I’d never heard of it.
‘Remember there are two kinds of hearing loss? There’s sensorineural, which is the one most people have where the cilia in the cochlea wear out, and then there’s conductive?’
I nodded.
‘Sensorineural loss takes place in the inner ear. If you had sensorineural loss the probability is that your high frequencies would be poor but your low frequencies would be better and you’d struggle to hear in very noisy places. But you don’t, do you? Your low frequencies are poor but your high frequencies are better and you’ve always said you can hear fine in very noisy places.’
She pulled her keyboard towards her, tapped, and angled the screen around. On it was a diagram of the middle ear, showing the malleus, the incus and the stapes. ‘Otosclerosis is a condition of the middle ear, not the inner. What happens with this is that bone starts to build up around the stapes. And as it builds up, the stapes can’t move properly which means it’s not vibrating against the tympanum and therefore it’s not conducting sound properly. With me?’
‘Mmmm.’
‘The tests I just did were for conduction, not for sensorineural loss, which is what we’ve been concentrating on previously. If otosclerosis is not that severe then it can be confused with something else, but this time it seems to be coming up loud and clear.’
She paused. ‘With otosclerosis there’s a very specific window of opportunity where it’s severe enough to be easily identified but not so severe that the hearing has completely gone. I would say you’re down to about twenty per cent of normal hearing now, which is still within that window.’
‘Oh,’ I said.
‘In France, there’s a group of people who have been doing private operations called stapedectomies on people with otosclerosis for a long time. There are people here in the UK who do the same operation but they don’t do it often, and most of them will have been trained by this French lot. They pioneered it and they’re really good at it because that’s what they do, all day every day.’
I felt heat sweep through me. ‘Could this improve my hearing?’
Jacqui made calming motions. ‘The results they get are mixed. Some people find the operation works amazingly, some it makes a difference to one ear or the other, and I should tell you that for some it makes it worse. But why don’t you do a bit of research and see what you think? I’ll write a referral letter and we’ll go from there.’
I was hot and cold, neither here nor there. I cycled home, thinking about what she’d said. Don’t be daft – there’s no such thing as an operable ear condition. I didn’t know what I knew any more, and I didn’t know what I was. Dithered. Walked upstairs. Walked downstairs again. Made calls, spoke to my partner Simon, wrote emails, tried to put it out of my mind. Sat there at my desk with a pad of paper in front of me drawing the same thing over and over again. Maybe there’s a cure. Probably there is none. Googled otosclerosis. Otosclerosis: A hereditary condition causing progressive deafness due to overgrowth of bone. Took the dog out. Came back, googled it again: medial fixation … stapes ankylosed … multifocal areas of sclerosis within the endochondral temporal bone … I didn’t understand, and whatever I did understand I certainly didn’t understand enough. I called my sisters, talked it through with them. This wasn’t cochlea implants, this was something else entirely – some kind of internal prosthesis thing; I didn’t know. Oh, right, said Flora, that sounds great. So when exactly do you get these cognitive implants?
A couple of days later, I called a patient of Jacqui’s who had already had the operation. Adam Sieff is a record company executive who started to develop otosclerosis in his thirties. When Jacqui had told him about this clinic in France, he hadn’t taken long to make the decision.
‘If you go for it,’ he said, ‘then they don’t do both ears at once. They operate on the worse ear first, and they like you to leave at least six months in between.’ He and his wife had travelled to France for the first operation two winters ago, and he’d had the second operation the following summer. The surgeons operated the day after he arrived, he’d spent nine days recovering, and then on the tenth day, they’d taken the bandages off his ear to reveal his sparkly new hearing.
‘And did it work?’ I asked.
‘Yes,’ he said. ‘Absolutely. Not perfectly, and I’m still using hearing aids, but whereas before I was down to about thirty per cent of normal hearing, now it’s more like sixty to seventy per cent, and stable.’
‘What kind of difference does that make to your life?’
‘On a practical level it’s just made everything that much easier. And on an emotional level, it’s huge. I’m still adjusting to it.’
‘So do you think the operations were worth it?’
‘Yes,’ he said. Unequivocal. ‘It’s not perfect, but it’s a damn sight better than what I had before.’
I put the phone down. My head hurt. My head seemed to hurt a lot these days. Even that – just the making of a phone call – was getting harder. It wasn’t just that the volume never seemed to be high enough, it was the murk and drift at the end of the line. Unless it was someone I knew so well I could second-guess their diction or use my image of them to fill in the visual blanks, I’d got so used to reading someone’s expression on their face that it was difficult to do without it. With someone like Adam whose speech pattern I didn’t know, I’d end up with the receiver rammed so hard against my ear I felt like I was trying to pour myself down the wires.
There was an operation. There is an operation. Oh my God!! There’s a bloody operation!!
After work that day I met Simon and as we walked across the park in the dusty summer sun, I told him about the conversation with Adam.
‘It’s expensive,’ I said. ‘Around seven thousand euros.’
‘What do you want?’ he asked.
I stopped on the path and looked at the dog, who was leaping through the golden grass like a shampoo advert straight into the waiting jaws of a Doberman. ‘This isn’t small stuff,’ I said. ‘This is head surgery. Twice.’
‘Do you want things to stay the same?’ he asked.
‘No.’
‘So go. Go and see.’
IN A ROOM in a town crossed with trees and pharmacies in southern France, an old man pushed a little box across his desk towards me. Inside, lying like a jewel on a special moulded lining, was a tiny titanium hook on a stick. It looked like a long metal question mark. I picked up the box, bringing it in close. A question mark, I thought; how apt. The stick was tiny, perhaps five millimetres long, and for a second I felt only stillness. I saw myself in X-ray, the flesh of me vanishing into translucency, nothing visible except my bones and these little crescents. Like earrings, but inside.
Four months later Simon and I set off on the Eurostar, heading down France towards Montpellier. Trees, ploughed fields, frost stilling the grass. Crows in the fields and the ploughed distances of the north. Telegraph lines, looping past to a rhythm, swoop, swoop, woop, woop … I sat by the window and looked down at the pattern of hairs on Simon’s arm, overwhelmed by his aliveness. In 48 hours, I would be lying on a table while someone cut holes into my head. What was I doing, risking the sound I’d still got?
There are two records of the next fortnight. The first is the chronological one – timetables, check-ins, surgery, reveal – but the second is always there behind it, an alter-image burned out of extremity. The crimple of waterproof hospital mattresses and the gangrenous stink of microwaved stews under the plastic cloche. The slop of slippers on lino. Low north winter light flickering through the plane trees along the Canal du Midi. Simon, arriving and leaving from his hotel near by and the expression on his face as he looked at me, lop eared, cross eyed. Walking slowly along lines of winter vines, their branches stumped, looking at the desiccated white soil beneath my feet.
Dr Vincent’s arrival on the ward was always marked by a shift in air pressure. A neat man in his late fifties, he wore the same crocs and comfy white fleeces above his scrubs as the other medical staff, but when he emerged from his office and walked down the corridors, something seemed to swirl in his wake. While the rest of the clinic was rendered in standard plastics, his own office was full of light and plants, a civilised space away from the impersonality beyond. He had been doing these operations for years, he assured us. Sometimes the results were good, sometimes they were very good, but there was almost always a significant improvement to hearing. The risk of side effects was very low – only 0.5 per cent – and he was proud to say he’d never yet had a patient who had regretted the operation. The only tricky thing for foreign patients was the trip back home. To get to the stapes he would cut a flap in the skin beside my eardrum, which meant that the cut would need time to heal. To give it a chance to do so successfully, there must be no alteration in air pressure around it for the next month or so. Which in turn meant that I couldn’t fly or take the TGV home, and that I must stick as close to sea level as possible.
On the second day he operated on my left ear. When I woke up I was told that it had all apparently gone fine and all I had to do now was to lie there with a lump of cotton wadding covering one ear hallucinating Californication Series 2 in sentence-sized bites. Every morning afterwards I’d get up and get dressed. Then I’d sit on the chair in front of my laptop. Not touching the keyboard, just sitting there staring wonkily at the screensaver and the clock, hoping that if I waited long enough the words and the colours might mean something.
It was strange, but since the operation something had happened to my sense of balance. My surroundings seemed suddenly to have become animate. Nothing stayed where it was put. The floor rolled up at me and the walls rebounded. Trolleys leapt from the side of passageways and plates flew off tables into my face. I’d reach out to pick something up and find I’d misaimed – my hand was too close, or it was too far away, or it was a few inches to the right or left. I kept knocking into things, or find myself conducting a one-woman food fight. My legs and arms were splottered with bruises I didn’t know how I’d got. Several times a day I’d find myself at the top of the stairs unable to figure out how they worked, or where I stood, or how exactly I was supposed to operate these extraordinarily complex pieces of spatial geometry. What are these things? Where do I put my foot? Where is my foot?
I tried everything I could think of to calm the Roaring Forties inside but none of it made much difference. I was drunk without drink, seasick far beyond sight of sea. In the evenings, when Simon had gone back to the hotel, I’d talk to the nursing staff, mugging up on my knowledge of French otology, or sit on the sofas in reception with the other stapedectomy patients, bobbing at each other like overwintering flamingoes. ‘Oh! Pardon, c’est à votre gauche. Moi? Oui, c’est la droite.’ Simon returned home and my sister Lucy came from London to see me. We sat in the town in pavement cafés wrapped in winter scarves, eating macaroons and gazing uncomprehendingly at the Christmas decorations. I kept trying to be myself but I couldn’t grasp these new laws of misrule. Everything seemed so foggy. I was back in the gale, back on the boat, back in the dark with the lostness rising.
Lucy returned to England, and on the tenth day I wobbled down the corridor for the Grand Reveal. In the light of his office, Dr Vincent removed the surgical tape covering my ear and pulled away the wadding. I couldn’t hear anything in that ear but that, he assured me, was normal – the eardrum needed time to heal.
Over on the other side of the building, the audiologist conducted another set of tests. She came round to my side of the booth with a tuning fork, banged it against the side of the chair and held it against the centre of my forehead. When this had been done after I first arrived, I’d felt the fork’s vibrations equally on both sides. Now, I only felt them on the right. Before I’d been able to hear residual sounds in the left ear. Now, I could hear only a hollowness. Something, it seemed, had got lost in translation.
‘Come,’ said Dr Vincent, gesturing to the chair in front of his desk. ‘Sit.’
When he looked at me, I saw that some of the wood-panelled distance between surgeon and patient had faded. There was a lot more of him in the room than there had been before.
‘It is very unfortunate,’ he said, ‘but this is not the result that we wanted. The results of the audiogram show a drop in your hearing in the left ear.’
He seemed upset. Something had gone wrong that shouldn’t have gone wrong and the wrongness had offended his sense of himself as a professional. Nought point five per cent or no, it was clear that Dr Vincent didn’t like mistakes. I saw his offendedness and liked him the more for it.
‘Has it gone?’ I asked. ‘Is it gone completely?’
‘It is not the usual result,’ he said. ‘It is not right.’
‘Can anything be done?’
‘Right now, we will start you on a course of steroids.’
‘Oh,’ I said. ‘I have to stay here?’
‘Three days,’ he said. ‘You will need to stay for three more days.’
‘Please,’ I said, my heart dropping, ‘I want to go home.’
‘Let me try.’ He was pleading too. ‘I ask you – let us try another way. I am so sorry for this.’
I went back to my room. A nurse stuck a canula in the back of my hand. Another nurse arrived with a ligature and a tray of needles. When the nurses had left I turned over on my left, smothering the dying ear with the pillow.
The following day things had not changed. What I could hear through the left ear sounded like someone trying to whisper down the barrel of a flute – strange plasticky clank-ings with the meaning rinsed out. I was supposed to be in London at a meeting. A friend from Scotland was coming to stay this weekend. Another friend’s mother who I had known since childhood had died but I couldn’t be there at the funeral or the flat or the meeting because I was here with the canula and the barrel. But Simon, bless him, had returned.
After three days it was clear that steroids hadn’t done the trick. ‘I am so sorry,’ said Dr Vincent. He looked stricken. ‘I am more sorry because you are from London and it is not so easy for you to travel.’ He waived his surgeons’ fees and assured us that, should we choose to come back, he would do whatever he could to put this right. As he said goodbye he gave us a vexed, equivocal smile.
By the time we left the clinic it was late Friday afternoon. If we wanted to get the last ferry back to Dover on Saturday night, we’d have to be quick. We tried to rent a car, but it was a public holiday and all the cars were gone. Please, we said, any car, any car at all, honestly. A bicycle. A donkey. A donkey with a puncture, even. Anything. At the Hertz desk they looked at us (Simon, pulling a deck of cards from his wallet: RA, Tate, British Library … ‘Um – do you take Oyster?’ Me, ripping through the French phrasebook for ‘Are there any significant changes in barometric air pressure between here and Calais which might in some way impact on recent oto-logical surgery?’) and gave us something to sign. We signed it. I drove. We got to a hotel. The hotel was all orange, a Hefneresque relic of the seventies. I don’t know whether I dreamed or stayed awake.
In the morning, I drove and kept on driving while Simon tried different kinds of music on the car stereo. Everything had an industrial quality as if it was being played from the back of a spaceship, all the words loaded with gravity. Before, deafness had been fog, but this was sound all fed back wrong, an acoustic mess. I couldn’t position myself in a way to get the sound in and I couldn’t find which way to turn. If I couldn’t hear music, if all music was corrupted, then what then? Sod it, I said to Simon, sulky and melodramatic. I’d rather just gaffer-tape the stupid thing shut and stick a big notice on it saying, ‘Gone.’ Don’t be daft, he said. Just wait.
A service station, somewhere north, rain sleeking. I was wearing the one-sided ear defender and as I stood by the fuel pump I watched the bandage around my hand come unfurled, spooling out in a long white flag. It fluttered in the wind till the rain pulled it down. The man at the pay booth looked at my one-sided headgear and as he gave me back my change, he leaned as far back in his chair as he could. Blimey, I thought, we must look like fugitives from justice.
Back in London. As time passed – Christmas, New Year, the middle of January – I noticed a change. Things in that left ear seemed to be getting louder. It was strange, but the previous week I’d been unable to hear planes on the Heathrow flight path and now there they were, obvious. How could I have missed them? And individual voices – Simon, my sisters, my mother, friends, colleagues – had begun to sound like themselves again. Something was going on, some kind of internal shifting. Was the ear healing itself?
One day in early February, the phone rang, and when I picked it up and put it to my left ear, I could hear my cousin’s voice better than I could with my right even without the hearing aid. By spring, there was no question any more. The ear had sorted itself out. Not only had the distortion gone but the hearing in that ear was immeasurably better than in the right ear. I was astonished, grateful, wobbly. For a while I was wary of washing my hair or taking a shower in case my ear canal filled with water and drowned my good fortune. When someone called my name I turned my head carefully. Perhaps something vital might get rattled out of place. But every day the hearing was there, solid and real. Hear to stay. Each morning I could hear the world outside – radio, drills, sirens, train sounds. I’d lie there for a few minutes savouring the sheer pleasure of being woken by a mobile.
It took a certain amount of nerve to make the decision to go back to France for the second operation a year later. But this time, it was different. This time, Dr Vincent’s surgery went without a hitch. I knew it was different as soon as the anaesthetic had worn off – no nausea, no rolling floors. When he took the wadding from the ear this time, the sound was raw, but it was – undeniably, absolutely – true sound.
A month or so after getting back I went to see Jacqui Sheldrake again. She did the tests and when she sat back, she beamed at me.
‘Fabulous,’ she said. ‘Outrageously good.’
‘You told me,’ I said, ‘that in the very best-case scenario I’d probably get back about eighty per cent of normal hearing.’
Jacqui prodded the fresh audiograms on her desk. ‘It’s more than that. This is just fabulous.’
Those head injuries, it turned out, had been red herrings. It had never been the skiing accident or the car crash which had caused my deafness, it had been the otosclerosis all along. The injuries may have accelerated its progression, but they had nothing to do with it – they’d just acted as decoys. If audiology is all otological detective work, then the clues had led directly to the wrong suspect.
‘So basically,’ I said to Jacqui, ‘did I go deaf for twelve years unnecessarily?’
‘No,’ she said, ‘definitely not.’
As she pointed out, the otosclerosis was there when I was first tested but it had been hiding behind the other symptoms. The cochlea won’t submit to a photograph or an MRI so there was nothing that Jacqui or Steve or anyone else could do but put together the various bits of conflicting evidence, balance the sizeable probability that it was nerve damage, and come to the conclusion that the head injury had caused the problem. It had needed time – time to progress to the point where the clues were undeniable and the suspect stark.
The truth was, if I’d known, I probably could have had the operation a few years earlier. But if I had, I would have done so at the lowest point in that silence. As it was, I’d come up the other side. I’d discovered that deafness had its compensations and that there were ways of interpreting the world which had nothing to do with hearing. I had made – and found – my peace.
A FEW YEARS LATER, I ran into Jack Kartush. I say ran, but really it was the result of a series of coincidences so extravagantly far fetched as to make me wonder briefly if there might be something in this cosmic design idea after all. In a country far away, there was a man who introduced me to a man who told me over dinner there was a man he thought I should talk to. At the next table were a group of people sharing things with rum. Jack, said Barry, leading me towards a figure in the middle of the group, meet Bella. Bella, meet Jack. Jack does stapedectomies. In fact, he practically invented stapedectomies, and he certainly invented a lot of refinements to prosthetic stapes. Once I’d done with all the ohmygodthat’ssoamazings and ofallthelobstershacksetc, we fixed a time the following day to meet.
Jack … well, the only word which really works is ‘trim’. Everything about him is trim. He’s an economical sort of size, he’s physically trim (late fifties, careful hair, engineered beard) and he exudes a sense of absolute delineation and containment – the way he rearranged his cutlery before he ate, the way he asked the waitress about each dish, the way he structured his sentences and lined the trajectory of his thoughts. I did not find it difficult to imagine him in an operating theatre laying out pieces of steel on a tray, and if his table manners are anything to go by, I assume he did surgery the way Fabergé did eggs.
Which is fortunate, since it wasn’t until I talked to him that I truly understood the white-knuckle ultimacy of the extreme sport that is ENT surgery. First off – as Steve had pointed out long ago – the ear and the brain are effectively joined, which means it’s impossible to be a surgeon of the ear without also being a neurosurgeon. Secondly, the ear is very, very well protected – better, in fact, than almost any other part of the body. And finally, for both those reasons, very few people ever get to meet it. The temporal bone is one of the hardest and most inaccessible in the human body, and thus the vast majority of medical students will pass through the full five to seven years of training without examining more than a two-dimensional textbook representation of a human ear. During cadaver dissection they’ll see the brain, they’ll see the spleen, they’ll become intimate with the workings of the human heart, but none of them will ever actually see how we hear. Only those who then go on to specialise in otology will anatomise the real thing. ‘Most people,’ Jack points out, ‘haven’t the slightest idea of the complexity of the ear. Of course, the brain is complex and the heart is complex, but the inner ear has all that complexity, all that variability, within eighteen millimetres.’
Those who do qualify then find themselves drawn ever inwards. With heart surgery, there are several ways in and several ways out. With ear surgery, there’s only one entrance – down the ear canal and through the skin at the side of the eardrum. Once in, they’ve entered a deeper chamber of secrets. ‘The other name for the inner ear is the labyrinth, so it looks a bit like a maze. The cochlea looks like a snail. So you have the coil for hearing, and then the three little balance canals, and wrapped tortuously right through that is the facial nerve, and next to that are the stapes, the incus and the malleus. And then the eardrum. And if you drill too far in the wrong area, you have the carotid artery that comes up from your heart to your neck to your brain, and if you enter too far into the carotid artery then the patient will exsanguinate on the table and die …’ – for some reason this really makes me laugh – ‘… and then just behind the carotid artery,’ Jack continues, imperturbable, ‘is the top of the jugular vein. Same thing.’
Just in case any of this seems a bit too workaday and straightforward, there’re the potential knock-on effects of doing anything at all so close to the cochlea. Whatever movement the surgeon makes sets up a vibration which moves the cilia like little fields of wheat. ‘You do this …’ he claps his hands ‘… and depending on the frequency, it will preferentially stimulate all those hair cells. So a small gesture is a huge tsunami for the inner ear.’
And, since this is all taking place in the immediate vicinity of various important bits of facial musculature and brain, there’s less than minus room for error in the other direction as well. ‘If you’re an orthopaedic surgeon and you’re doing big stuff, you’re drilling a hole in a femur or an arm, then there’s a little bone dust, you squirt a little water on it and then you put the screw in. But if you’re doing microsurgery of the ear and brain, you have to do it under a microscope and if you’re off by two mil, it’s the difference between paralysing someone’s face, or deafening them, or making them dizzy. Because the inner ear is one of the most sensitive organs of the body. If you think of sound as vibrating molecules, your ear has to pick up this nanometre vibration in order to be able to transduce it to your brain. So if you inadvertently go two mil too far into the inner ear when you’re doing stapes surgery, if you catch an edge with the burr of the drill and spin off, then in a fraction of a second it’s gone from where you want it to be to bumping into the facial nerve and paralysing your face.’
I consider this. Finally, I say, ‘You must get good at breathing carefully.’
‘Actually,’ says Jack, ‘that’s true – and there are some moments with laser microsurgery where it’s so critical that you have to watch the patient’s in and out breath – when she exhales is the best time to shoot the laser.’
Thus, given his knowledge of just how high the stakes are in this particular game, what really puzzles him is why anyone would submit to the operation. ‘I would be interested in examining why a person like you would put themselves under the knife when it also places you at risk for total deafness and dizziness. Why would you do that?’ Because, I say, I’m sitting here surrounded by kids and voices and muzak in the background, and I can hear every word you speak. I understood that the risks were big, but I also understood that the potential benefits were bigger. My incentive is obvious. What’s less obvious is why any surgeon should choose the anatomical equivalent of the North Face of the Eiger.
The clue, he says, is in the music. When he was growing up in Michigan in the 1960s he didn’t want to be a doctor, he wanted to be a rock star, same as everyone else. At high school he had a band, grew his hair long, started writing his own stuff. When it became clear that stardom was unlikely he dropped out of the band, got his grades up and progressed to med school. Even so, and however far up he got, he always felt that he was ‘a spy in the house of love, a bohemian long-haired guy pretending to be an academic’.
During a paediatrics placement, ‘A nurse came in and said, “There’s a kid come in with a torn outer ear.” So I opened up my textbook and there was a German illustration, black and white, of the anatomy of the outer ear, the middle ear, the inner ear and the brain. And before I went in to see the child, I said, “This is beautiful, from both the left- and the right-brain perspective.”’ Though captivated by surgery, he never let go of the music but chose to spend his professional life getting up at 5 a.m., doing a full day’s work, and then putting in his hours on the guitar. From the beginning he always understood that medicine and music have an entirely symbiotic relationship, and that the practice of one could enhance his skills in the other.
As a parting shot, he shows me a video of a stapedectomy. In terms of complexity it looked to me like an astronaut sewing buttonholes on the dark side of the moon, and if I hadn’t understood before, I definitely understood then. It wasn’t until the conversation with Jack Kartush that I realised just how lucky I’d been. How far beyond lucky, in fact. Out of the 11 million with hearing loss I had been one of the 2 per cent who had lost that hearing young, one of the one in a hundred who developed the clinical symptoms of otosclerosis, one of the tiny percentage of those who fitted the criteria for stapedectomy, and then one of the almost-nothing-sized club of people who got a perfect result from the operation. I was – I am – lucky beyond all imagining. I am bionic. I have two tiny titanium question marks in my ears, and I am rich beyond all the dreams of avarice.