When you hear someone say your name, you get a feeling of inclusion, of the world being familiar with you, of being recognised, wanted. There’s so much more to the saying of someone else’s name than just trying to catch their attention. They are soliciting you, personally. I find myself reacting in the staff room differently when people say ‘Morning, Ben,’ as opposed to plain ‘Morning.’
I was in the supermarket last weekend, wheeling Iris round in her buggy, stuffing packets of pasta into the basket beneath while Iris pulled stuff we didn’t need off the shelves on her level and held them close to her. I was hoping neither of us would be arrested for shoplifting, when I heard a woman calling, ‘Ben,’ and instinctively turned towards her. We exchanged a look and a shrug and she pointed towards a boy who was leaning over one of the freezer cabinets, not quite tall enough to reach whatever it was he was trying to pull out. Clearly he was the Ben she was seeking out, but the hearing of my name, the looking up, the recognising of my mistake and shrugging it off created an exchange between me and the mother of the other Ben – a small, insignificant exchange but nevertheless one born out of hearing my name.
It’s daft really, making things like that more significant than they are. But that’s how I feel. Suddenly, hearing my name spoken seems like this huge, momentous thing, and it gets me every time someone like Ruth comes in all cheery and says, ‘Hello, Iris,’ and Iris takes no notice.
Julie Effingham says that when she is in a crowded place with her daughter – yes, I’ve been making an effort and taking in the details and I know now she’s called Ruby – Ruby calls her ‘Julie Effingham’! Apparently she worked out, at quite an early age, that if you called out ‘Mum,’ in a busy environment nearly half the women turned round.
When she told me, I had to swallow hard.
‘Are you OK?’ she asked.
‘Yes, that’s funny,’ I replied, but actually her anecdote didn’t make me laugh. It choked me up.
And this morning, we are going to find out about a way of maybe one day enabling Iris to hear her name spoken.
That’s why Ruth is still here. That’s why I’ve taken the morning off school and a supply teacher is taking my Shakespeare class. We are going to visit an audiology unit, and the options for Iris will be explained to us.
The audiology unit is at the top of a very tall tower block, with views over London. From the windows of the waiting area you can make out the Shard, the Gherkin and the London Eye.
‘Great views for the hard of hearing!’ I quip, and Maggie laughs politely, but I don’t think she finds me funny. She’s anxious.
‘Mr and Mrs Deakin?’ A young woman, a woman who looks far too young to be a professional in any field, relieves Maggie of the possibility that I might make any more jokes and introduces herself.
‘I’m Claire Joiner.’ She smiles and extends her hand to each of us. ‘Would you like to follow me?’
She leads us down a long corridor into a room with a wall of computers along one side.
We know now that Iris’s hearing loss is probably too severe to benefit from hearing aids. Claire Joiner is going to talk to us about cochlear implants.
Of course we’ve done our research – looked them up on the internet – but Claire Joiner has something better than that to show us.
‘I’ll give you both a set of headphones,’ she says, tapping away on the keyboard, bringing up various files which I can see contain sound waves. ‘And then I’m going to play various extracts of speech and music and you will get some idea of how things sound to someone who has a cochlear implant.’
We are both keen, Maggie and I, for Iris to be able to ‘hear’ again. Yes, she could learn to sign, and Maggie has already begun signing to her, but we will never both be able to learn enough to communicate with her fluently and I – well, both of us – want her to hear, something, somehow.
‘It will sound quite strange to you at first,’ Claire says to us. ‘But what you have to understand is that the brain is very accommodating.’
‘What do you mean?’ I ask.
‘Well, the headphones will give you a realistic impression of what your daughter might be able to hear, were you at some point to go ahead with cochlear implants. But it will sound strange to you at first. It might help if you just listened, and then I’ll explain some more after.’
‘OK.’ Maggie and I put the headphones over our ears.
‘So first of all I am going to play you an extract of speech.’ Her voice sounds slightly muffled with the headphones on but is still audible.
The voice she plays sounds scratchy and jagged, like an old radio recording that is being played on damaged vinyl and broadcast on medium wave. I can make out the words, but only just. It requires a huge effort of will and concentration. I can’t listen for long and I take the headphones off.
‘Enough?’ Claire asks, and looks from me to Maggie, who takes her headphones off too. She pushes the stop button on the screen in front of her.
‘It was doing my head in,’ I say, negatively.
‘It’s quite hard to listen to,’ Maggie agrees, but as always she is more positive. ‘But it’s amazing if someone like Iris, who really doesn’t seem able to hear anything now, might be able to pick up speech like that. Don’t you think?’
She addresses this to me but I still feel disappointed. I don’t know quite what I was expecting, but something better than what I just heard.
I think of Iris and wonder for the first time if maybe it would be better for her not to hear anything, to live in her own silent world, rather than to have to hear the world distorted so grotesquely.
‘Do you want to hear some music now?’ Claire Joiner asks.
‘Is it any better?’ I hear myself saying, even though, seconds before, a voice in my head had urged me to be positive for Maggie’s sake.
Maggie addresses herself to the audiology specialist. ‘I’m a musician,’ she tells her. ‘Or, rather, I was. I’ve not really worked since having Iris. I was on the verge of starting again, but then we found out about her deafness.’
‘Deaf people can enjoy music. But I’m sure you’ve been told that already.’
‘Yes.’ Maggie nods. ‘It’s one of the things that made me – us – want to think seriously about implants. I know there are people in the deaf community who think it’s trying to make a hearing child out of a deaf one.’
‘I wouldn’t put it quite like that,’ Claire says.
But Maggie came across this phrase on a deaf community forum. One of the members she’d been talking to made it very clear she regarded it as butchery, almost, to force an operation on our child which she regarded as unnecessary and potentially harmful. I had no sympathy with her at the time, but now, after hearing what I’ve just heard, I have more.
‘Music is very important to me,’ Maggie continues. ‘I can’t imagine a world without it. I can’t imagine my own daughter never being able to hear me play, never being able to enjoy a melody or a cadence. I know she might be able to pick up a beat or a rhythm but that doesn’t seem enough, to me. I don’t want her never to experience something that gives me so much pleasure.’
‘Do you want to put the headphones on again?’
Maggie nods and places them over her ears.
I wait a little longer, watching the audiologist bringing up another file on the screen, clicking the Play button so that sound begins to seep from the phones while they are still on my lap.
Only then do I pick them up and place them over my ears.
What I hear is terrible. To say it sounds like a school orchestra tuning up would be unfair to the school orchestra, even though it’s pretty bad. But that’s the best way I can think to describe what I hear. It’s a cacophony of screeching. It sounds as if I am listening to something underwater with the volume turned up.
I am suddenly reminded of my mother, who used to walk into my room as a teenager when I was listening to music on the stereo I’d bought with money from my Saturday job. Her disapp
roval used to filter across the room to me before I actually realised that she was there with it. She hated popular music; even contemporary classical was beyond her.
I’d turn it down, so she could say whatever she’d come to my room to say, but it would always be prefaced with, ‘What on earth is this ghastly music?’
It used to puzzle me then – how she could hear something so completely different from what I was hearing. I know people have different musical tastes but she used literally to cringe, as if it was painful to hear it.
I think of her now saying, ‘What on earth is this ghastly music?’ and begin laughing out loud, probably louder than normal because of the headphones, a little hysterically too.
The audiologist looks alarmed. Maggie takes her headphones off. ‘Are you OK, Ben?’
I carry on laughing, aware that I must be a ridiculous, slightly manic spectacle.
‘It’s unbearable,’ I say, when I manage to calm myself down and stop. ‘That’s not music. It’s just noise. Is that really the alternative to hearing nothing?’
‘It’s not as bad as it seems at first,’ Claire Joiner says quietly.
‘It’s fucking terrible.’ I feel angry now with everyone for having offered us hope, especially with Claire because she is sitting there in front of us, trying to be calm, trying to tell us that what she’s presenting us with is a solution.
‘It sounds distorted to you.’ She carries on regardless of my outburst, and Maggie reaches across the space between us and puts her hand on my leg. ‘But, as I said before, the brain is very accommodating. Yes, when implants are first fitted, that is what people hear. But the brain gradually adapts to the way the sound is transmitted and starts to process the information it receives in a different way. So, once people get used to it, they are able to hear more clearly.’
Maggie is looking at me anxiously, clearly disturbed by the manic laughter.
And that’s when I cry, for the first time since we got the diagnosis. Maggie cried at the time, and has often cried since, muted bouts of mourning for the part of Iris we have lost, but I’ve simply been angry.
A part of me feels I should be embarrassed, sitting there with this young audiologist looking unsure what to do.
‘Would you give us a minute?’ I hear Maggie say, and Claire nods and gets up to leave the room, closing the door gently behind her.
I’m not quite sure how long we are there for, me sobbing like a baby, Maggie holding me tightly to her chest, stroking my hair, kissing the top of my head until I still, and realise Claire Joiner is back in the room with us.
‘I’m sorry,’ she says, quiet still. ‘But I’m running late for my next appointment.’
Isobel, Wednesday, later
The solicitor is brisk and efficient – helpful, even, from a legal point of view.
‘Right, well, I don’t think they have much of a case,’ Roberto says, looking at the letter, having listened to my account of the events that took place over the summer. ‘There are several factors in your favour. There were various outbreaks of measles last summer, including one in the part of France where you were holidaying. It is quite possible that Iris Deakin caught the virus from another source. And for their case to be successful you would have to have definitely known Gabriella had measles and left her in Iris’s company with the deliberate intention of infecting her with the virus, and you clearly didn’t do that.’
‘No,’ I replied. ‘Of course I didn’t. The worst thing I did was not think. I knew Gabs was ill, but I didn’t know it was measles. I just thought she had a cold. I even thought it might help Maggie, having her there, when we all went out for the day. I never meant any of this to happen.’
Hearing Roberto even ask me that is unnerving. It makes it seem too real. This is what they are accusing me of: deliberately harming their baby! I can’t believe they really think that, but that’s what they’re saying.
‘So what happens next?’ I ask him, trying to remain calm.
‘Well, I will send a letter saying that, while you are sympathetic to their plight, you have no legal responsibility. They will probably contest this. But in my opinion they don’t have a case and it will be a waste of everyone’s time pursuing it.’
‘So you think you could make them drop the case before it gets to court?’
‘I’d certainly hope to,’ he replies. ‘They’ve not laid out any specific cost yet, so they may be hoping to settle out of court anyway.’
‘But how much are they likely to ask for?’
‘I really can’t say at this stage. But hopefully it won’t come to that. I’m sure we can sort something out before it gets to court, anyway.’
‘That’s good.’ I feel a little relieved, although even the prospect of settling out of court is daunting. We don’t have any extra money. Ben knows this perfectly well.
‘Indeed. So I’ll send them a letter, and we can see where we go from there.’
‘And how much will that cost?’ I ask nervously.
‘Five hundred pounds for this meeting and sending the letter.’
I gulp and wonder how we will even find the money just to pay him for his advice and letter-writing, let alone any settlements. Eric earns enough to cover the bills and the mortgage, but it’s always a balancing act trying to fund the extras.
As if to reinforce this point, Harvey comes home from school later with the details of a school trip he wants to go on. No, not wants to go on – has been singled out for.
‘It’s a G and T trip,’ he says.
This is how they refer to the pupils who’ve been chosen to have an eye kept on them in the huge comprehensive school that he and Gabriella attend. There are nearly sixteen hundred pupils at the school – over three hundred in every year. The numbers are so huge, it’s easy for kids to get lost. So they are singled out at both ends – special needs at one end and G and Ts at the other. Harvey is on the Gifted and Talented register for English, art, design and technology and maths.
I imagined them all being taken out for cocktails when I first heard the term being used. Gabriella is G and T in a few subjects, too, though I wonder if Vinnie will be, by the time he moves up to the school, or if he’ll still be a slow reader and given extra attention on account of his special needs rather than his talents.
Harvey’s G and T trip is residential – a sort of expressive Outward Bound-type week which only twenty pupils have been selected to go on. It will involve a strange combination of art and abseiling – unleashing their inner creativity though outdoor pursuits and workshops. It’s a week’s holiday in Wales, really, and I can see from the look on his face how much Harvey wants to go.
‘I know it’s a lot of money,’ he says, acutely aware, in a way I wish he weren’t, that our finances are limited. ‘But I could put some of my savings towards it and maybe try to earn some money too. I could sell some of my stuff on eBay.’
‘What stuff?’ I ask, more as a delaying tactic than a question.
‘My Lego.’ He seems to have thought about this. ‘I never really use it any more.’
This is true, but the range of multicoloured brick edifices and structures gathering dust on his shelves are testament to his creative talent. It seems a shame to get rid of them.
‘And my DS games,’ he continues. ‘I could sell my DS too, and the Build-a-Bear stuff!’
Harvey shrugs at the latter admission. Every now and then, when I’m trying to get them all to give their rooms a bit of a clear-up, I ask Harvey if he still wants to keep it all and he has always replied with a slightly embarrassed, ‘Yes.’ The bear still sits on the end of his bed. I imagine he passes it off to his friends as ‘ironic’, the way they pass off any interest they deem too young or too uncool, but its bags of clothes and accessories are stuffed in the back of his wardrobe. They haven’t actually seen the light of day for years, but until now he’s been reluctant to part with them.
‘Are you sure?’ I ask him.
He may be willing to part with some of the trap
pings of his childhood, but I’m not sure I am. The Lego models he spent so many hours painstakingly assembling and then dismantling so he could have the pleasure of building them again, the bear outfits and the funny games that went with them… I am more attached to these trappings of their childhood than the kids are.
‘I’ll speak with Dad about it, when he gets home,’ I tell him.
But I know it’s not going to be easy to find the money, not on top of the five hundred pounds we need to pay the solicitor’s initial fee and whatever other charges follow.
‘About what?’ Gabriella walks in the door and catches the last sentence.
‘A school trip,’ Harvey says, happy to leave it now that he’s asked me if he could go. ‘I’m going to watch telly.’
‘What’s the trip?’ Gabriella asks, and I notice she is not wearing her uniform.
‘It’s a G and T art trip to Wales,’ I tell her. ‘Why are you in home clothes?’
‘It was a non-uniform day,’ she says, but she looks as if she’s lying.
‘Harvey wore his.’
‘Just Year Eleven,’ she says, cooler now. ‘Will he be able to go? On the trip?’
‘We’ll have to see,’ I say. ‘It’s a week. So there’s a lot to consider.’
‘Such as?’ Gabriella appears to be spoiling for a fight.
‘Well, how much school he will miss, and whether they can cater for his nut allergy for that period of time,’ I say vaguely.
‘And the cost.’ She hits the nail on the head. ‘Now Ben and Maggie are suing you, we won’t have any money for anything, will we?’
‘It’s not quite like that,’ I say.
‘Then what is it like?’
‘It’s complicated.’
‘Jesus Christ, Mum,’ she says, and turns to leave the room but stops in her tracks. ‘By the way, Dad called. He said he has to work late tonight. He won’t be back until after nine.’
She says this triumphantly, as if there is some minor victory in the fact of Eric not coming home until later than usual, and I suspect she is right. We seem to have changed, over the course of a couple of weeks, from a family that was reasonably happy to one where standoffs and petty arguments are the norm. Why would Eric rush to get home?
Living With It Page 21
