Living With It Read online

  ‘But it hasn’t finished its cycle.’

  ‘It has. I just heard it beep.’

  ‘That was the washing machine,’ Maggie says, too patiently.

  ‘What’s that supposed to mean?’

  ‘It doesn’t mean anything. All I’m saying is there is no point you jumping up to unload the dishwasher because it hasn’t finished its cycle. It was the washing machine which beeped.’

  ‘You’re implying I don’t do enough around the house,’ I snap. ‘Because I can’t tell the difference between the particular beeps our various household appliances make.’

  ‘I’m not implying anything of the sort, Ben. I’m just saying that the dishwasher hasn’t finished. Jesus…’ She bites her metaphorical lip.

  ‘What?’

  ‘Nothing.’

  Iris, who’s been sitting in a chair that clips on to the table, rolling wax crayons over a sheet of paper and seeming happy enough, suddenly emits one of her horrid high-pitched screeches.

  ‘You’re pissed off with me now,’ I say, ignoring our daughter.

  ‘I’m not,’ Maggie replies, but of course she is. Why wouldn’t she be? I am tetchy and irritable and taking it out on her. ‘Look, Ben, if you need to be doing something, then by all means unload the washing machine and hang the washing up. All I asked was if you wanted to finish your coffee.’

  ‘Well, clearly it’s time I acquainted myself b-b-better with the household appliances.’ I curse myself for stuttering, riled by the stupidity of the argument but determined to have it anyway. ‘Where’s the laundry basket?’

  ‘By the back door,’ Maggie says, wearily, getting up herself, lifting Iris out of her chair, even though she’s stopped screeching and returned to crayon-rolling.

  Maybe we should have gone to the party. I’d wanted to make a big angry statement by not going, but Yasmin had just seemed to accept it when I’d phoned to tell her we couldn’t make it – and why. ‘Of course, I understand.’

  Her reaction was disappointing. Too understanding and sympathetic. No outright condemnation of Isobel. No real sense of shock at what had happened. No ‘Jesus, that’s terrible’ or stunned silence. She was the first of our friends to hear the news and I’d wanted her to be outraged. I didn’t want a measured, ‘That’s awful, Ben, I’m so sorry.’

  I suppose I should have expected it. Deafness, to her, with crazy Conrad for a son, is probably not that bad. Maybe she stopped herself saying, ‘That’s great, Ben. She’s deaf, not autistic. Lucky you. Get on with it. You’ll learn to live with it.’

  Paddy was more shocked, when I told him, but the old group loyalties are still there. Sympathy for Ben, but we’re not going to condemn Isobel outright because she’s our friend. Why not, though? She’s in the fucking wrong. It wouldn’t have hurt Isobel if Paddy had said as much, and it might have helped me.

  So we’re at home, knowing some of our friends will soon be glugging wine all day, marking a milestone in the traditional way. And it’s getting to me, not really doing anything while elsewhere life is going on.

  ‘Will you watch her while I take a shower?’ Maggie asks. She’s put Iris on the floor of the kitchen now, in front of a shape-sorter.

  ‘You know I will,’ I say, as I drape wet clothes over the laundry maid.

  She doesn’t need to ask me to watch my own daughter. She knows I could watch Iris all day. Her every action still captivates me. Her infant beauty bowls me over. I just can’t stand that when I say, ‘Hey, pumpkin!’ she no longer turns to look at me and smile. She just carries on with what she’s doing, and if she gets bored, which seems to happen increasingly quickly, then she starts to cry.

  Our post lands on the floor of the hall mid-morning. There’s a lot today: mostly junk, a few bills and a subscription magazine for Maggie. The letterbox has a brass flap on the inside to keep cold air out, and every time a letter is posted through it makes a loud clanging sound, followed by the ‘phut’ as the piece of post hits the floor. It’s a noisy process, and today it culminates with ‘Alan with an ampersand’ ringing our doorbell.

  We call him this on account of his Christmas card. We had no idea what our postman was called, until he sent one last year. Even when we opened it, it took us a while to work it out. ‘Happy Christmas from &lan,’ it read.

  ‘Oh, it’s Alan!’ It dawned on Maggie first.

  I still wasn’t convinced. ‘Alan with an ampersand?’ I asked.

  From then on our post was delivered by ‘Alan with an ampersand’, just as one of Maggie’s old boyfriends, Iain, was always referred to as ‘Iain with two eyes’, differentiating him from other Ians we knew, who were Cyclopes.

  Our doorbell is loud and insistent. It makes you jump if you’ve not heard it before; in fact it makes me jump now, even though I already know Alan with an ampersand is on the other side, struggling to push something through. I’d thought he might give up and ring the bell.

  But Iris, sitting on the floor chewing shapes from the sorter she’s apparently ‘too young’ to master, doesn’t react at all: not to the clanging, or the landing, or the insistence of the bell. She just carries on exploring the red triangle-shaped block with her tongue, as if it were a lollipop rather than a bit of wood painted in primary-coloured non-toxic paint.

  And I feel like snapping at her now, ‘Can you really not hear?’ – the way old people whose hearing is going start snapping at everyone around them for mumbling, refusing to admit they have a problem, making it everyone else’s.

  I stomp to answer the door, glancing back at Iris to see if she notices. I want her to be fooling us. Is she too young, I wonder, to have decided to pretend to be deaf, just to annoy us? Of course she is. But it doesn’t stop me thinking or hoping it, or wanting to jolt her into hearing by yelling at her.

  I open the door and Alan with an ampersand says he has a parcel for Maggie, although he calls her Mrs Bisseker, because that’s what it says on the parcel. It’s wrong because we are not married, so officially she is Ms Bisseker.

  ‘More books,’ I say, feeling an irrational need to explain why we’ve been having so many parcels lately. It’s not really any of Alan’s business and I doubt he cares. But I want to impress upon him that we are not simply shopping and making his mailbag a little heavier than usual, but also improving ourselves, or rather improving our knowledge about our daughter’s condition.

  That’s been Maggie’s response: to read as much as possible, as if knowing about it will make it easier to handle. She can spend whole hours on the National Deaf Children’s Society website, when she’s not on Amazon finding books.

  I suppose she’s right: the more we know, the better. But my response is different. I’m angry, because it’s so fucking unnecessary. I’m furious that this has happened to our beautiful baby girl and I’m furious with Isobel, because it’s her fault.

  Maggie cautioned me against calling her as soon as we found out. ‘It’s not going to help.’

  She was so calm, but these things hit people in different ways. I knew she was upset too. She hasn’t picked up her trumpet in days and that’s unheard of. She used to play all the time, but it’s been quiet in our house since we found out. Too quiet. A quiet only punctuated by the doorbell.

  ‘Maybe someone else should tell her,’ Maggie said. ‘She needs to know, I agree, but maybe she needs to hear it from someone else and get her head round it before you actually speak to her.’

  Sometimes Maggie can be so understanding I almost can’t stand it. It makes me want to shake her and work up a bit of the rage that I feel, just as I want to shout at Iris, tell her to stop closing her ears to the world and react to a sound.

  I actually thought, when we went to the hospital two weeks ago, that the trip was just a formality: a reassurance for anxious parents whose children had had a previous spell in hospital; a box that NHS staff needed to tick on the records of kids who’d had measles. Have they been in for a follow-up appointment? Check. Did they take their children to be checked over by an
audiologist? Check.

  ‘She’s just not as responsive as she used to be.’ Maggie was more anxious, especially when the GP referred Iris to the hospital, saying something about ‘ruling out deafness’.

  But I still thought that was all we were doing: ruling deafness out, not having it confirmed. I hadn’t even thought I needed to go with them, but Maggie had insisted. ‘I don’t want to be on my own if there is anything wrong.’

  ‘I’m sure there isn’t.’

  After Iris had come out of hospital before, we had both done the whole internet thing, even though the doctors had advised against it. I’d looked up the effects of measles and the possible complications. Again and again the online reports had stressed that these were ‘rare’. My older brother had measles, and he was and is fine. Younger, I’d had a jab and been immune to the few weeks’ unpleasantness that the virus brought with it.

  Iris had been ill too – horribly, alarmingly ill. I never wanted to see her so poorly again. But she’d recovered quickly and seemed fine.

  She was sitting happily on Maggie’s lap, looking about the room exactly like a child who was engaged with the world, when the consultant spoke.

  ‘Your daughter appears to have suffered Sudden Sensorial Bilateral Hearing Loss.’

  ‘What do you mean?’ Maggie and I both said this at once.

  What I was actually thinking when he said this was, Why can’t they use plain English when they tell you something?

  I tried to catch Maggie’s eye. I wanted to raise my eyebrows in a way that conveyed Isn’t it daft, the way they talk?

  But Maggie was ahead of me. ‘You mean she can’t hear?’ she translated. ‘And that it happened suddenly? Will it return?’

  ‘Well, there are things that can be done.’ The consultant looked from me to her. ‘But I’m afraid the damage appears to have been caused by the virus your daughter contracted earlier this year. Her hearing won’t return naturally, though of course it is possible for her to have hearing aids and – ’

  ‘Hearing aids?’ I suddenly linked the plural with the ‘bilateral’ from the consultant’s earlier sentence. ‘You mean she’s lost the hearing in both her ears?’

  ‘It would appear so,’ the consultant said, tidying his notes into a pile, as if delivering this bombshell was a natural conclusion to this particular consultation.

  I think someone must have passed the news on to Isobel by now. Or they will soon. Fuck knows how she’ll react. Will she be shaken out of her smug ‘I work so hard at being the perfect parent’ mode and feel as terrible as she should? Or will she dredge up some list of selfish justifications for landing this on us?

  ‘Are you regretting not going to the party?’ Maggie is washed and dressed and on the money. She has scooped Iris off the floor and is talking to her, even though she can’t hear a word. ‘Do you think Daddy would rather be getting drunk at a party?’

  Maggie curls her hand into a C shape and tilts it towards Iris, as if drinking. Already she has bought a book on signing and is communicating with our deaf daughter in a way neither of us ever imagined. I am still obstinately resistant. What about hearing aids? What about implants? I am not willing to consign her to this other world.

  ‘This came for you.’ I ignore Maggie’s question and hand her the parcel. ‘Another book.’

  ‘Yes, another book,’ Maggie replies. The standoff continues. She could put a stop to it, if only she’d share some of my anger.

  It’s not that she’s entirely accepting. There have been tears, lots of futile ‘what if’s, defiantly questioning, ‘Why didn’t she tell us it could be measles?’ ‘Why do you think the kids weren’t vaccinated?’ But she’s more focused on working out how we’re going to cope than on pointing the finger.

  So she’s a better person than me. So what? I think as I hand her the parcel containing what I suspect to be more books on deafness: Coping with Deafness, Living with Deafness, Coping with a Deaf Child. There are hundreds of books on the subject and Maggie seems determined to work her way through all of them. Well, at least the ones about children. There are books on living with deaf parents or siblings, on working with deaf colleagues. There’s even one – and I’m glad it’s out there because when Maggie found it, searching on Amazon while Iris was napping after that hospital visit, she called me over and we laughed – called Living with a Deaf Dog. I thought it was a spoof when she showed it to me.

  ‘A deaf dog enjoys life just as hearing dogs do,’ Maggie read from the description of the book. ‘He still has his fine nose and his eyes, which are far more important faculties to a dog.’

  ‘Is it for real?’ I asked, sounding strangely American to myself, wondering if an American wrote the book.

  ‘I think so.’ Maggie read on. ‘This invaluable book will help owners of deaf and hard-of-hearing dogs not just to accept their loyal companions for what they are, but also to establish a closer bond as they help each other find new or adapted ways to live together.’

  ‘Do you think deaf dogs have hearing people trained up to react for them?’

  Maggie laughed, not at my lame joke but at the fact that the author had a deaf Dalmatian called Chocolate. ‘It seems a bit cruel to confuse the poor dog by calling it chocolate when it’s black and white,’ she said.

  ‘Well, it can’t hear her,’ I replied and Maggie laughed at my joke, this time.

  But it pissed me off, that I’d made the joke and that she’d found it funny. It seemed cruel. I pointed this out. ‘Do you think we’ll start making jokes about Iris?’

  Maggie stopped laughing and started to cry.

  Isobel, Saturday afternoon

  At what point would I have had to act differently for it to have made a difference?

  That’s what I keep asking myself, as I close my eyes on the train back home, trying to block out the world and focus on what I’ve just been told. Eric still thinks I’m not feeling well. I think he thinks I drank too much.

  ‘Why don’t you have this seat, Bel?’ he says. ‘I’ll sit over there with the kids. You could maybe try to sleep.’

  ‘Thank you.’

  I am grateful for the thinking space, for the chance to ask myself ‘what if’, and, because we’ve just been with the same group of friends, I keep going back to the time when we were last all together and wondering how things might have played out differently.

  When I was a child, our family holidays always had a particular day to look forward to, a day that was imbued with some sort of expectation and mystique – a day we’d save for the end of the week so that even while we were away, doing the thing we’d been looking forward to all year, there was still something else, something better, to anticipate.

  In our case it was getting the ferry to Padstow. These were the days when Padstow was a very touristy fishing village in Cornwall but not yet a place of foodie pilgrimage. The excitement lay in waving the flag from the other side of the estuary to let the ferry that traversed the narrow point know you were there, then the ten minutes chugging through the often choppy water, rewarded with a few hours wandering round gift shops and eating ice cream.

  It was the one day of the holiday when I didn’t have to swim before being allowed a cornet – a peculiar rule of Dad’s. Pleasure was not just to be taken; it had first to be earned by swimming in the freezing Atlantic. The rule only applied to myself and him, but it is a rule I still use with my own offspring. ‘Why don’t you go on the trampoline before we have cake?’ ‘Don’t you want to come for a walk before lunch?’ ‘Why don’t we save the sweets until after the water park?’ I am a chip off the old block.

  Mum was allowed to stand on the shore, holding towels, ready for when we got out. But she still got her raspberry ripple cone. She was an adult already. There was no point in Dad trying to instil an element of toughness in her.

  Or perhaps she already knew she was ill. I did not.

  There was no trace of Rick Stein in Padstow then; no scattering of artisan bread shops attracting Notting Hill
habitués. Nevertheless Padstow was always held up as the thing we would do when the weather was good, or when all the other fun had been had and could only be topped by this pinnacle of holiday outings.

  Paddy and Sally, at their house in Gascony, had created a similar ritual: a thing that at some point we would all do, when we began to tire of lying round the pool and buying oysters in the ‘disgusting’ shacks. Harvey coined this phrase for the dégustation sheds where you could taste oysters. He thought disgusting was more apt, given the delicacy on offer. ‘Why on earth would anyone want the world to be their oyster?’ he would remark, every time Eric threw a slippery morsel of mollusc to the back of his throat and pronounced that it was. ‘If your world has got to be a fish, why can’t it be battered cod from Jenny’s fish and chip shop?’

  The thing Paddy and Sally had spent the weeks whipping up enthusiasm for was a trip to the Dune du Pilat. ‘One day we’ll go and climb the biggest sand dune in Europe,’ Paddy had promised early on. Harvey and Vincent were closer to frenzied excitement than enthusiasm.

  ‘I’m in training!’ Vinnie had been rushing up and down the stairs of the house daily, ever since the outing had been outlined. ‘Should I bring all this?’ he’d ask, laying out an array of items for this ‘expedition’ on his bed.

  Preparation was well under way before Paddy even decided on the date, and by the time the weather was slightly cooler and we’d tired of lounging we were all looking forward to the change of scene as much as the boys were.

  But by then Gabriella was really quite ill. Her cough was worse; the slight temperature she was running was higher; her eyes were sore and she seemed listless.

  ‘Should I bring my torch?’ Vinnie was winding up his battery-free flashlight and directing it at various spots on the wall. I feared the anticipation of the Dune du Pilat might prove more exciting for him than actually climbing it.

  ‘Do you know it has a volume of sixty million metres cubed?’ Paddy was further heightening the anticipation with hard facts, on the morning we finally got ready to go.