‘So Evie,’ he said – now he had dealt with her mother. ‘Tell me what happened.’
‘I fell off the swing,’ she said.
‘Anything else?’
‘Nope.’
‘Good girl,’ he said. ‘Did anything happen before you fell? What were you looking at?’
She gave him a keen and suspicious glance and said, ‘The clouds.’
‘Were they nice clouds?’
Evie did not answer. But she did not take her eyes off him, either then or subsequently, and when, at the end of the consultation, he offered her a lollipop she said, ‘No thank you,’ which, from her, was a very great insult indeed.
Malachy O’Boyle sat back in his swivel chair and, in his easy, adenoidal way, told them Evie had bumped her head, and that she would be fine. It was also possible, he thought, that she had suffered an event, a convulsion or seizure, what people used to call a fit. He was by no means sure of this, and even if she had, most children who do never have a second one. But just so they were aware of it. Just so they could keep an eye.
They left his room and they paid the receptionist fifty-five euros. Then they went out to the car. Aileen said, ‘We are going to casualty.’ She was white and trembling in the passenger seat beside him. Seán said, ‘It’s Friday evening.’
But they went to casualty, and they sat in casualty for four-and-a-half hours, in order to be seen by a tired girl in a white coat who repeated pretty much what the fake-Irish GP had said. The girl, who looked about sixteen, resisted all talk of seizures and MRI scans, allowed that she could keep Evie in for observation but it would have to be on a trolley. And so they sat, or paced, or stood beside the trolley where Evie slept the delicious, heartbreaking sleep of a child, while, all around them, Friday-night Dublin wept, bled and cursed (and that was just the porters, as Aileen tartly said). They had one plastic chair between them. From time to time, Seán bent over the end of his daughter’s mattress, and set his head on his folded arms, where he lurched asleep for thirty seconds at a time.
They stayed, itching with tiredness, until, at ten o’clock in the morning, a more important-looking doctor swept past, checked the metal clipboard, pulled Evie’s eyelids open, one at a time, and with a breezy bit of banter, gave them all permission to go home. They had no idea who he was – as Aileen pointed out later, he might have been a cleaner in drag – but they were, by this stage, pliable, grateful, almost animal. All their normal human competency was gone. The rules had changed.
Aileen swung, in the next while, from efficiency to uselessness. She bullied or she froze; there was nothing in-between. She became convinced, after many late nights on various websites, that there was something seriously wrong. Evie had been crying out in her sleep for months – perhaps a year – before she fell off the swing, and sometimes they found her confused and on her bedroom floor. Aileen dragged the child around three different GPs (‘The medical equivalent of a stage mother,’ as Seán described her), until she got a referral for a paediatric neurologist with a two-month waiting list, and that night she got, for the first time since he had known her, rat-arsed on champagne.
Meanwhile, the au pair did not so much leave as flounce out, and although they needed another, and urgently, Aileen stalled at the idea of ringing the agency again. She took half days off work, and sometimes made Seán take the other half, she rang neighbours and got babysitters in. The childcare, which had been until then a smooth enough affair – at least as far as he was concerned – became insoluble. It was as though she did not want it to work, he realised, one day when the handover went astray, and she ended up screaming down the phone at him: You said two o’clock but you meant three o’clock. How many lies is that? How many lies are there, in a whole fucking hour?
The guilt and the worry had overwhelmed her, she said later. She just wanted to stay with Evie, all the time.
And Seán said, ‘She’s fine.’
It happened at breakfast time. Evie was always a joy in the morning – ‘You put them to bed screaming,’ Seán said, ‘and they wake up all new.’ Evie sat up in bed at first light and read a book – or just talked to the pictures – then got up at the sound of the alarm clock to slip between her waking parents. She talked non-stop, she wandered and chatted and got distracted. Her mornings were spent in a state of loveliness and forgetting: looking in her wardrobe and not remembering to dress, helping to make the porridge then letting it go cold, trying to walk out the door before she had located her shoes.
On this morning, she was neglecting her porridge for a black-and-white stuffed hen, which she danced across the table with squawks and cluckings, in the middle of which she rolled her eyes back and slid on to the floor. Seán watched her for many seconds before he even tried to make sense of what was happening. Under the table, Evie shook and rattled. Her eyes were open and fixed. She didn’t look at him, but at the wall behind her head, and what disturbed Seán, in retrospect, was the gentle, thoughtful look he saw in her eyes, like someone examining the idea of pain. Her hands were clenched, her right foot throbbed or kicked, and it seemed to him that her body was outraged by her brain’s betrayal, and was fighting to regain control. This was an illusion, he knew, but nothing could quite convince Seán that Evie was not suffering. She made small mewling sounds, as tiny and uncomprehending as when she was newborn, and her mouth drooled and snapped.
Aileen had pulled the chair back, to give her space. She stood over her daughter. Then she ducked down quickly to cushion her head from the hard tiles.
‘Don’t,’ said Seán, who had some idea that Evie should not be touched, at all.
‘Don’t what?’
Aileen’s calm was almost unnatural. She held her daughter by the shoulders, then slipped easily on to the floor and set Evie’s head on her lap, reaching up to hold on to the tabletop with her free hand.
Seán remembered this image with great clarity: the unflattering fold of fat between her knee and thigh, and Aileen, usually so fastidious, with drool smearing her skirt. Meanwhile, Evie’s clenched hands pumped more slowly, and her lips seemed almost blue.
She was not breathing, he thought.
Evie bucked and bucked and then stopped. She looked as though she had forgotten something. Then, after a moment of great emptiness, her body pulled in a rasping breath. After this came another breath. Aileen rubbed and patted her, making soothing, whimpering sounds and it took a long time to bring the child back to herself – or perhaps none of it took a long time, perhaps the whole thing happened in a very short time; it just felt endless and messy. Evie was confused, Aileen was confused, calling her name, rubbing her back and arms. And then, something shifted and caught.
Evie sat up. She roared. She struggled out of her mother’s restraining arms; outraged, calling the world to account.
He was so proud of her.
There are times when Seán seems to blame me for the failure of his marriage, but he never blames me for what happened to Evie. I coaxed it all out of him on the car journeys we took down to the west; the beautiful small roads along the Shannon beyond Limerick: Pallaskenry, Ballyvogue, Oola, Foynes. We drove with the wide river showing through sun-dappled trees; Seán concentrating on the driving, me safely dressed, neither of us looking at the other, sitting side by side.
Talking about her makes him simple. Seán, a man, as he would himself admit, addicted to winning and to losing – when Evie got ill, all that fell away, and the world opened up to them in a way that amazes him yet.
The morning Evie had the seizure, Aileen rang the neurologist’s office where they had an appointment in a fortnight’s time. They were on their way into casualty. Aileen was in the back of the car, holding Evie around her seat belt, and managing the phone. The doctor’s secretary said, ‘Hang on a minute,’ and she put her hand over the mouthpiece. Then she came back on to say, ‘Dr Prentice will send down the team.’
‘Sorry?’
‘When you come to casualty. Dr Prentice will see you after you talk to her
team.’
And she did.
It was, for those first few hours, a kind of bliss. A doctor, two doctors, a bed in the day ward. The consultant arrived; a small, profoundly powerful woman, trussed up in a navy crêpe suit. The consultant was kind. She allowed for an MRI scan and an EEG. She used the word ‘benign’, which made them think about brain tumours. She wrote a prescription. She said a lot of nice and reassuring things, many of which were hard to remember.
They walked the hospital corridors looking for an exit, with Evie still exhausted in her father’s arms, and they felt – at least Seán felt – the heaviness and beauty of her head, as it rolled on his shoulder, the mystery of bringing her into the world, and the way she escaped the mystery by being so absolutely and pragmatically herself. They looked around them, memorising their future in this place: the signed football jerseys in their frames, the wire games on wooden tables, and yellowing murals of cartoon characters long gone out of fashion. A cleaner asked were they lost, which they were. A passing nurse said, ‘Do you know your way out?’ There were only two kinds of people in this place – people who were nice, and people who were lost. They held hands. They had never been closer; heading for the swing doors of the children’s hospital and the daylight beyond.
For the next several months they bought and wrangled their way up the waiting lists and the house was run according to Evie’s medical schedule. They rose in darkness, wrapped her in a blanket and carried her to the car. Seán drove as the dawn slipped down the hillsides, filling the bowl of Dublin Bay with a pale mist, and the sun rose out of the sea in front of them, washed and white. In the hospital, Evie was hot and damp and delicious to the touch, as they carried her down one corridor or another to the right waiting room, or the wrong one, where nice people (they were all nice, all of them) took their paperwork or redirected them, and they walked on, looking through the glass panel on each door in case they should stumble into a ward where the bald children were, or the children with scars too big for their small bodies: all the hopeful little freaks. Very quickly, they stopped seeing the children’s diseases and saw them as real children, and this frightened them too: the idea that this reversal of nature could be an ordinary thing. They did not look at their own reflections. Not ever. Each sick, or even dying, child – beautiful as a flower – seemed to be attached to some unwashed parent, who slept on the floor, and forgot to get her roots done, and looked like a refugee.
After the first few appointments, Aileen said there was no point in the pair of them spending their lives down there, she could manage on her own. Then, when the tests were clear, she threw it back at him, saying, ‘You couldn’t even come to the hospital, you weren’t even there.’
It was the relief that made her shout. The diagnosis, when it came, was very terrible, or very hopeful – it was hard to say which. Dr Prentice said that Evie would, in all probability, grow out of the seizures. She did not have a tumour, she would probably not die – unless in her sleep, suddenly, for no reason at all: unless in the bath, or under a car, or in their living room, if she had a seizure while standing beside the fire. There was nothing wrong with her, she seemed to say, except for this thing that was wrong with her. The medication was presented as a choice: seizures or no seizures, you decide.
‘Most people,’ said Dr Prentice, in her kind, crisp way, ‘opt for the latter.’
The pills made Evie confused – at least Aileen thought so. A contented, almost biddable child, she got frustrated and threw tantrums, even in the morning – when all that lovely forgetting was now turned into something more sinister. Aileen thought she might be having hallucinations.
‘You think?’ said Seán.
It was hard to tell. The child was four years old: she spent her day in a state of constant imagining. But Aileen said she stopped dead in the street, or startled at nothing. Every so often, she lifted a hand as though brushing cobwebs from in front of her eyes. She said strange things. Aileen did not know if this was some kind of shadow of the seizures that had now stopped, or a side effect of the pills she took to stop them. Seán privately thought it was a symptom of Aileen’s anxiety, but they both listened to Evie’s prattle with a more attentive ear.
After months of this fretfulness and concern, and many hundreds of hours on the internet, Aileen decided to take Evie off her medication.
‘I want my little girl back,’ she said.
Aileen’s worry had become impossible. She had worried so hard and for so long, it had transcended itself and turned into a rapture of care.
‘It’s not her anymore,’ she said. ‘It’s not Evie.’
Seán argued that the child was only four: ‘She’s changing every minute,’ he said. ‘She’s never the same.’
To which Aileen answered, ‘How can you not know?’
So Evie was weaned off her tablets and the seizure, when it happened, was almost a relief, after so many days of waiting for it to come. Days and weeks of being present and mindful, waiting for the crackle in her brain, fearful of the shadows, as the sun was cut to flitters by the roadside trees. Do you smell something, Evie? Do you see something? What are you thinking, Evie?
It happened in the crèche where Evie now spent her days. The woman in charge didn’t seem to bat an eyelid. It was an event. She had managed it.
‘I just held her in my arms,’ she said. ‘Poor little mite.’
Not that they liked her for it.
‘What a cow,’ said Aileen, because reality had shifted for them, one more time. They were now looking at a world in which an absent, juddering child was a normal thing. Their child. Their beautiful, ever-present Evie.
There is no doubt that Aileen, who was above all things rational, was not behaving rationally when she decided to put an end to this nonsense, once and for all. She put Evie on a diet. It was a medical diet. The hospital they attended did not supervise it, but some hospitals did, she said, though it was usually for children much worse off than Evie. It was a ketogenic regime – like Atkins but weirder and stricter – it seemed to involve endless but very exact amounts of whipped cream. No carbohydrates were allowed. None whatsoever. Not an apple, not the stain of sauce on a baked bean. One crisp and the child would be foaming at the mouth and falling under the nearest bus, no question.
Seán should have argued it out, he said. Or he should have talked to her more – Aileen that is – made her feel less lonely in it. But it was all unstoppably itself, he thought. And there was nothing so terribly wrong with whipped cream. So he just let her at it.
The diet never worked. At least, Evie never stuck to it – Seán suspected, besides, that the crèche woman was feeding her Hula Hoops, out of sympathy. They started fresh every Monday, by Thursday Evie would be discovered with sugar on her breath. Aileen would go into the next room in order to compose herself, then she would come back to discuss things with Evie.
‘Remember, Mrs Mooch, how we talked about your brain?’
One evening, after finding a nest of peach stones stuffed down the back of the sofa, Aileen stood and wept. They were turning their daughter into a failure, she said; their fabulous daughter, who was now a constant disappointment to them; also, when it came to food, an accomplished thief and liar. And though Aileen saw all this happening, she did not know how to fix it, and there was nothing Seán could do except stand outside the circle and tell her that everything was going to be all right when it was not all right. It was all impossible. And it was all her fault.
It was during this phase of their lives, the ketogenic phase, that I saw Seán for the first time, standing at the bottom of my sister’s garden in Enniskerry. I do not know what he was thinking about. He might have been thinking about Evie, or about work, or about a woman at work. He might have been admiring the view, or wondering how much the houses were worth, between here and the sea. Perhaps he was pining for my sister Fiona, who is so pretty and sad. Or he might have been thinking about nothing. The way men often claim to do.
‘What are you thinking
about?’
‘I don’t know. Nothing much.’
It is fairly clear, however, that he was not thinking about Evie in any practical way, because, when she came up behind him there was a stolen smear of something sticky and very purple on her little face.
He said, ‘Oh for God’s sake, Evie,’ and he sighed. He watched Aileen scrub at the gunk with a paper napkin, then he looked over to me.
Of course, I know Evie’s story mostly from Seán’s point of view, and I know that Seán does not always tell the truth. Or he does not remember the truth. The way he tells it, he met Fiona’s sister (as he used to think of me) for the first time, walking in Knocksink woods, with the kids up to their knees in muck. He has no recollection of me at the party, standing by the fence.
But whatever way he remembers it, there is something in Evie’s story that Seán is constantly trying to understand. Something about himself, perhaps.
And then there is Aileen.
Evie marched into Terenure – quite early on – and handed me a battered-looking envelope, then she rolled her eyes, and clumped off to switch on Joan’s crap little TV. Inside was an information sheet, headed ‘What to Do When Someone has an Epileptic Seizure’. This was clipped to a pathetic note from Aileen – typed, unsigned – that began, ‘When Evie was four years old, she was diagnosed as suffering from benign rolandic epilepsy of childhood (BREC). Recently that diagnosis has been under review.’ I read it all. I didn’t understand a word of it. I said to Seán, ‘So what exactly is wrong with her?’
‘Actually nothing,’ he said. ‘She’s fine.’
Evie, still off the medication, went to school the autumn after the party in Enniskerry, and Aileen had a whole new reality check. The very nice and very young teacher listened to her tale and blinked twice. She said, ‘Could you run that by me again?’ Seán and Aileen then spoke to the head-mistress who was completely reassuring. She also reminded them, on their way out the door, that there were twenty-nine other children in Evie’s class.
Forgotten Waltz, The Page 17
