I took a mouthful of orange juice, then spat it out and yelped.
‘What?’ Ryan had appeared. He was never good in the mornings. He was never good in the evenings either, come to think of it. He might have been in top form in the middle of the day, but I never got to see him then, so I couldn’t comment.
‘The orange juice,’ I said. ‘It burned me.’
‘Burned you? It’s orange juice; it’s cold.’
‘It burned my tongue. My mouth.’
‘Why are you talking like that?’
‘Like what?’
‘Like … your tongue is swollen.’ He grabbed my glass and took a swig, and said, ‘There’s nothing wrong with that orange juice.’
I tried another sip. It burned me again.
Jeffrey materialized at my side and said accusingly, ‘Did you put butter on this toast?’
‘No.’
We played this game every morning.
‘You’ve put butter on it,’ he said. ‘I can’t eat it.’
‘Okay.’
He looked at me in surprise.
‘Give him some money,’ I ordered Ryan.
‘Why?’
‘So he can buy himself something for breakfast.’
Startled, Ryan handed over a fiver and, startled, Jeffrey took it.
‘I’m off,’ Ryan said.
‘Grand. Bye. Okay, kids, get your stuff.’ Normally I ran through a checklist as long as my arm for all their extra-curricular activities – swimming, hockey, rugby, the school orchestra – but today I didn’t bother. Sure enough, about ten minutes into the car journey, Jeffrey said, ‘I forgot my banjo.’
There was no way I was turning around and going back to get it. ‘You’ll be fine,’ I said. ‘You can manage without it for one day.’
A blanket of stunned silence fell in the car.
At the school gate dozens of privileged, cosmopolitan teenagers were milling in. It was one of the greatest sources of pride in my life that Betsy and Jeffrey were pupils at Quartley Daily, a non-denominational, fee-paying school, which aimed to educate ‘the whole child’. My guilty pleasure was to watch them as they traipsed in, in their uniforms, both of them tall and a little gawky, Betsy’s blonde curls swinging in a ponytail and Jeffrey’s dark hair sticking up in tufts. I always took a moment to watch them merge with the other kids (some of them the offspring of diplomats – the light bulb of my pride glowed extra-bright at that bit, but obviously I kept it to myself; the only person I ever admitted it to was Ryan). But today I didn’t hang around. My focus was on home, where I was hoping for a quick lie-down before going to work.
As soon as I let myself into the house, I was overtaken by a wave of weakness so powerful I had to lie down in the hall. With the side of my face pressed against the cold floorboards, I knew I couldn’t go to work. This was maybe the first sick day of my life. Even with a hangover I’d always shown up; the work ethic went deep in me.
I rang Karen and my fingers could barely work the phone. ‘I’ve the flu,’ I said.
‘You haven’t the flu,’ she said. ‘Everyone says they’ve the flu when they just have a cold. Believe me, if you had the flu, you’d know all about it.’
‘I do know all about it,’ I said. ‘I’ve the flu.’
‘Are you putting on that funny voice so I’ll believe you?’
‘Really. I’ve the flu.’
‘Tongue flu, is it?’
‘I’m sick, Karen, I swear to God. I’ll be in tomorrow.’
I crawled up the stairs, stumbled gratefully into bed, set my phone for 3 p.m. and fell into a deep sleep.
I woke dry-mouthed and disoriented and when I reached for a swig of water, I couldn’t swallow it. I focused hard on waking myself up and swallowing the water, but nothing happened: I really couldn’t swallow it. I had to spit it back into the glass.
Then I realized that, even without the water in my mouth, I couldn’t swallow. The muscles at the back of my throat just wouldn’t work. I concentrated hard on them, trying to ignore the rising panic, but nothing happened. I couldn’t swallow. I actually, really, couldn’t swallow.
Scared, I rang Ryan. ‘There’s something wrong with me. I can’t swallow.’
‘Have a Strepsil and take some Panadol.’
‘I don’t mean my throat is sore. I mean I can’t swallow.’
He sounded bemused. ‘But everyone can swallow.’
‘I can’t. My throat won’t work.’
‘Your voice sounds funny.’
‘Can you come home?’
‘I’m on a site visit. In Carlow. It’ll take a couple of hours. Why don’t you go to the doctor?’
‘Okay. See you later.’ Then I tried to stand up and my legs wouldn’t work.
When Ryan came home and saw the state of me, he was gratifyingly contrite. ‘I didn’t realize … Can you walk?’
‘No.’
‘And you still can’t swallow? Christ. I think we should ring an ambulance. Should we ring an ambulance?’
‘Okay.’
‘Really? It’s that bad?’
‘How do I know? It might be.’
A while later an ambulance arrived, with men who strapped me to a stretcher. Leaving my bedroom, I had a stab of sudden shocking grief, as if I had a premonition that it would be a long, long time before I saw it again.
Watched by Betsy, Jeffrey and my mum, who were standing at the front door, silent and scared-looking, I was loaded into the van.
‘We could be gone a while,’ Ryan told them. ‘You know what A&E is like. We’ll probably be hanging around for hours.’
But I was a priority case. Within an hour of my arrival a doctor appeared and said, ‘So? Muscular weakness?’
‘Yes.’ My speech had degenerated so much that the word emerged like a slurred grunt.
‘Talk properly,’ Ryan said.
‘I’m trying.’
‘This the best you can do?’ The doctor seemed interested.
I tried to nod and found that I couldn’t.
‘Can you squeeze that?’ The doctor gave me a pen.
We all watched as the pen fell from my clumsy fingers.
‘How about the other hand? No? Can you raise your arm? Flex your foot? Wriggle your toes? No?’
‘Of course you can,’ Ryan said to me. ‘She can,’ he repeated, but the doctor had turned to talk to someone else in a white coat. I caught the occasional phrase: ‘a fast-moving paralysis’, ‘respiratory function’.
‘What’s wrong with her?’ There was panic in Ryan’s voice.
‘Too soon to say but all of her muscles are shutting down.’
‘Can’t you do something?’ Ryan beseeched.
The doctor was gone, being dragged across the room to another crisis.
‘Come back!’ Ryan ordered. ‘You can’t just say that and then not –’
‘Excuse me.’ A nurse pushing a pole ushered Ryan out of her way. To me, she said, ‘Just get you on a drip. If you can’t swallow, you’ll get dehydrated.’
Her search for a vein hurt, but not as much as what happened next: a catheter was put into me.
‘Why?’ I asked.
‘Because you can’t get to the toilet on your own. And just in case your kidneys stop working.’
‘Am I … going to die?’
‘What? What are you saying? No, of course you’re not.’
‘How do you know? Why am I speaking so funny?’
‘What?’
Another nurse showed up, wheeling a machine. She put a mask over my face. ‘Breathe into that, good woman. I just want to measure your …’ She watched yellow digital figures on the screen. ‘Breathe, I said.’
I was. Well, I was trying to.
To my surprise, the nurse started speaking loudly, almost shouting – numbers and codes – and suddenly I was on the move, being whizzed on a wheely bed through wards and corridors, on my way to intensive care. Everything was happening really fast. I tried to ask what was going on, but no sounds came
out. Ryan was running beside me and he was trying to decipher the medical language. ‘I think it’s your lungs,’ he said. ‘I think they’re shutting down. Breathe, Stella, for God’s sake, breathe! Do it for the kids if you won’t do it for me!’
Just as my lungs gave up, a hole was cut in my throat – a tracheotomy – and a tube was shoved down into me and attached to a ventilator.
I was put in a bed in the intensive care ward; countless tubes ran in and out of my body. I could see and hear and I knew exactly what was happening to me. But, except for being able to blink my eyes, I couldn’t move. I couldn’t swallow, or talk, or wee, or breathe. When the last vestiges of movement left my hands, I had no way of communicating.
I was buried alive in my own body.
As tragedies go, it’s quite a good one, no?
Saturday, 31 May
06.00
It’s Saturday but my alarm goes off at 6 a.m. I have agreed a writing routine with myself: every day I will ‘rise’ early, ‘ablute’ in cold water and be as disciplined as a monk. Diligence will be my watchword. But I’m knackered. Last night, the news that Ryan really was going ahead with his fool project meant it was gone midnight before I began my Sleep Coaxing Routine.
For most of my adult life, my sleep has been a shy, unpredictable creature, who has to be shown how much it is welcome before it will appear. There are many ways I demonstrate my love – I drink mint tea, eat yoghurt, swallow a fistful of Kalms, have a bath in sandalwood oil, spray my pillow with lavender mist, read something very boring and listen to a CD of whales singing.
I was still tossing and turning at 1 a.m. and finally – God knows at what time – I fell asleep and dreamed about Ned Mount, from the telly. We were somewhere sunny and outdoors – it could have been in Wicklow. We were sitting at a wooden picnic table and he was trying to give me a big box containing a water filter. ‘Please take it,’ he said. ‘I’ve no use for it. I only drink Evian.’
I knew it wasn’t true about him only drinking Evian; he was just saying it because he wanted me to have the water filter. I was touched by his generosity, even though he’d got the filter for free, from a PR company.
Now it’s 6 a.m. and I’m supposed to be getting up but I’m too tired, so I go back to sleep and wake again at 8.45.
Down in the kitchen, Jeffrey watches in silent disapproval as I make coffee and throw granola into a bowl. Yes, in my heart I too know that granola is, in fact, many small pieces of biscuit, with the odd ‘healthy’ cranberry and hazelnut thrown in. But it’s an officially designated ‘Breakfast Food’, therefore I am entitled to eat it guilt-free.
I hurry away upstairs to escape my son’s judgement and I grab my iPad, get back into bed and check on Ryan. No more posts from him since last night. Thank Christ. But it’s still horrifying.
His video Mission Statement puts me in mind of a suicide-bomber thing – the rehearsed delivery, the zeal; he even sort of looks like one, with his brown eyes, dark hair and neat beard. ‘My name is Ryan Sweeney and I’m a spiritual artist. You and I are about to embark on a unique undertaking. I’m giving away everything I possess. Every single possession! Together we’ll watch as the universe provides for me. Project Karma!’ He actually raises a clenched fist. I swallow hard. All we’re missing is an ‘Allah Akbar’.
I watch it four more times and think, You knob.
But the video has been viewed only twelve times and that was by Jeffrey and me. Nobody else has picked up on this. Maybe Ryan will change his mind. Soon. Before any damage is done. Maybe this video will be taken down in a moment. Maybe the whole thing will just go away …
I contemplate ringing him, but, on balance, I’d prefer to live in hope. Until recently I never knew I had such a talent for denial. I take a moment to praise myself: I really am very gifted at it. Very!
While I’m here online, I decide to see how things are with Gilda – a couple of clicks is all it will take. Then I manage to force myself to stop and in my head I say the mantra for her: May you be well, may you be happy, may you be free from suffering.
Moving on, it’s time for my pill – the likelihood of me getting pregnant at the moment is non-existent, but I’m only forty-one and a quarter and I am still very much in the game.
God, I’d better do some work!
I jump out of bed and prepare to ablute – ‘ablute’ sounds so much more admirable than ‘shower’. I don’t want to ablute – or, indeed, shower – but standards must be maintained. I can’t put clothes on over my unabluted body, I simply can’t. It would be the beginning of the end. But until I get curtains I can’t sit at my desk in my night attire for any interested passers-by to see.
I ablute in cold water. Because Jeffrey has already had a shower and all the hot water is gone.
For God’s sake! My clothes! In one of his many attempts to hurt me, Jeffrey has taken to doing his own laundry – which I have to say isn’t at all hurtful – but he’s after accidentally washing some of my stuff and he’s over-dried them to the point where they’re as stiff as cardboard. And he’s shrunk them. I tug on a pair of jeans but I can’t close the top button.
I try another pair and it’s the same story. I’ll just live with it for the moment. My one other pair of jeans is in the wash-basket and I’d better make sure Jeffrey doesn’t get his hands on them.
I sit at my desk, I fix a small smile to my face and I read the inspirational words I will read every morning until this book is written. They’re from Phyllis, my agent, and I’d transcribed them exactly as she’d barked them at me that day in her office two months ago. ‘You were rich, successful and in love,’ she’d said. ‘Now? Your career has tanked and I don’t know what’s up with that man of yours but it’s not looking so good! You’ve a lot of material there!’
I pause in my reading, to let the words sink in, as you would with a prayer. I’d felt sick then and I feel sick now. Phyllis had shrugged. ‘You want more? Your teenage son hates you. Your daughter is wasting her life. You’re the wrong side of forty. Menopause is racing towards you down the track. How much better does this get?’
I’d moved my lips but no words had come out.
‘You were wise once,’ Phyllis had said. ‘Whatever you wrote in One Blink at a Time, it touched people. Try it again, with these new challenges. Send me the book when it’s done.’ She was on her feet and trying to move me towards the door. ‘I need you out of here. I’ve got clients to see.’
In desperation, I’d clung to my chair. ‘Phyllis?’ I was pleading. ‘Do you believe in me?’
‘You want self-esteem? Go to a shrink.’
I was wise once, I remind myself, my hands hovering over my keyboard, I can be wise again. With vigour, I type the word ‘Arse’.
12.17
I’m distracted from my scribing by my phone ringing. I shouldn’t even have it in the room, not if I’m serious about doing uninterrupted work, but it’s an imperfect universe we live in, what can we do? I check the caller; it’s my sister, Karen.
‘Come over to Wolfe Tone Terrace,’ she says.
‘Why?’ Wolfe Tone Terrace is where my parents live. ‘I’m working.’
She makes scoffing noises. ‘You work for yourself. You can stop any time you like. Who’s going to sack you?’
I swear to God, no one has any respect for me. Not for my writing, not for my time, not for my circumstances.
‘Okay,’ I say. ‘I’ll be there in ten minutes.’
I throw my phone in my bag and vow, afresh, that I will be disciplined soon. Very soon. Tomorrow.
In the hall I meet Jeffrey.
‘Where are you going?’ he asks.
‘To Granny and Grandad’s. Where are you going?’ Like it isn’t obvious, the defiant way he and his yoga mat are staring me down, like a couple on the verge of eloping. We love each other, they seem to be saying. Whataya going to do about it?
‘Yoga? Again?’
He looks at me, all sneery-faced. ‘Yeah.’
‘Great. Goo
d … er …’
I am uneasy. Shouldn’t he be going out and getting drunk and into fights like a normal eighteen-year-old boy?
I have failed him as a mother.
Mum and Dad live in a quiet side street in a small terraced house that they bought from the council a long time ago.
Mum opens the front door and greets me by saying, ‘Why in the name of God are you wearing boots?’
‘… Aaaahh …’
She eyes my jeans. ‘Aren’t you roasting?’
It was early March when I arrived in Ireland and since then I’ve had the same three pairs of jeans on rotation. There’s been so much on my mind that clothes were at the bottom of my list.
But the season has gone ahead and bloody well changed and suddenly I need sandals and floaty pastel garments.
Mum, a short, roundy creature, has always felt the cold but even she’s going about without her cardigan.
‘So what’s happening here?’ I ask.
I can hear a whirring noise, then Karen’s eldest child, Clark, bursts past Mum and yells at me, ‘They got a stairlift! For Grandad’s bad back!’
I can see now. A contraption has been fitted to the wall by the stairs and Karen is strapping herself into a seat with three-year-old Mathilde on her lap. Then she lifts a lever and the pair of them start their whirry ascent. A very slow whirry ascent. They wave at Mum, Clark and me and we wave back and the mood is celebratory.
Mum lowers her voice. ‘He says he won’t use it. Go in and sweet-talk him.’
I stand at the sitting-room door and stick my head into the tiny room. As always, Dad is sitting in his armchair, with a library book open on his lap. He radiates grumpiness, then he sees that it’s me and he becomes a little more cheery. ‘Ah, Stella, it’s you.’
‘Are you coming for a go on the stairlift?’
‘I’m not.’
‘Ah, Dad.’
‘Ah, Dad, my eye. I can climb the stairs on my own. I told her not to get it. I’m grand, and we haven’t the money.’
He summons me closer. ‘Fear of death, that’s her problem. She thinks if she buys yokes like that, they’ll keep us alive. But when your number’s up, it’s up.’