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Over the years, the lungs become increasingly damaged and eventually stop working properly …
Debbie Carfax, twenty-three, was diagnosed with cystic fibrosis at the age of two and has been told she has less than …
Catching the common cold could kill this young man with cystic fibrosis as he waits for a life-saving lung transplant …
End-stage cystic fibrosis and how to manage the final days …
One in every 2,500 babies born in the UK has cystic fibrosis …
Average age of death …
Like drowning …
Just breathe.
A piece of hold music droned on, vanilla and classical, chosen to calm interminable situations.
I could feel the adrenalin rise inside me. Everything sharpening, narrowing, ready for flight as I stared at that single question.
Her levels looked abnormal.
I understood that there was a level to everything.
Under the right level, you drowned.
Above the right level, you overflowed.
Finally, a new crackle as the hold music was killed.
‘Yvonne says it’ll be something called a sweat test. You’ll need to bring lots of blankets for the baby to make her sweat. Do remember that. Blankets. And maybe some snacks and mags to pass the time?’ I had no time to reply before she said, ‘And make sure that your husband is with you. Have you got the address? Paediatric outpatients …’
‘Yes. Thank you.’
‘Best of luck.’ And with that, Kirsty was gone.
I hung up, the appointment details scribbled on the back of a tea-bag box with a free T-shirt promotion.
Make sure your husband is with you is the same thing as saying: Are you sitting down? It’s what a person says before they give you the news that will knock you to the floor and turn out the lights.
The consultant with a blunt fringe took a deep breath before she said, ‘I am sorry to have to tell you …’
The hospital, God, just the smell of the place – the mashed potatoes and disinfectant and newly opened bandages – the only way to have kept that air from crawling into my cells would have been to stop breathing altogether.
I threw up when she told us, but I made it to the sink. Still holding Mia, there was no time to pass her to anyone.
Everything emptied.
Chapter 1 (#ueb14dd0a-e299-5bae-b9a3-20dc9be1ac8e)
Late one afternoon, on a day that was hot and thick and had been promising a storm for too long, I boarded a red London bus. Three passengers on the top deck, dotted far from each other, heads bowed to their phones. Windows closed, greenhouse conditions. I pushed hard at my nearest window pane and was the only one to flinch when it opened with a bang, like something being fired.
I sat, felt the scratching nylon pile beneath my fingertips and resented the electric blue and fluorescent orange chosen to cheer the commuter. Don’t tell me how to feel with your upbeat seat fabric! I will make my own decisions about how I feel.
And I felt fine, actually. Probably better than in the three weeks and six days since diagnosis because now I was on my way to do something. I was on my way to meet people who shared my new language, to ask them: What is this island we have been exiled to? How long have you been waiting for the boats and how do we bring them here quicker?
Mum would be pleased because the kind of thing she might have said if it hadn’t sounded so harsh in the circumstances was, You’re a mother now! Take responsibility! Then I could say to her, But that’s exactly what I’m doing! Taking responsibility for my family. And my feelings.
Because the truth was that no one else – no husband, doctor, sister or friend – was actually doing anything to change the fundamental facts of it and so it was up to me. That was how I felt.
The bus sped through the paint-splatted, urine-stained, poster-torn mess of a city with its crammed stacks and storeys, its ripped holes and soldered joints. If it were up to me, I’d wipe the whole lot away with a bulldozer and start again.
Learn to clean up your own mess, Mum used to say when I was growing up.
I’m doing it, I’m doing it. Once I’ve finished, can I go out?
I was dealing with the mess. I was taking action.
The consultant with the blunt fringe had said: Delta F508 is the name of the mutated gene that you both carry. Mia has taken a copy from each of you.
Then I had said, She didn’t take them. We gave them to her.
She’d said something nice like we mustn’t blame ourselves. But who else was there?
I had plugged Mia into my own life source and helped her build her heart and lungs and organs using my blood and my oxygen and my energy.
I was her mother. I had given her life.
I was her mother. I had given her a death sentence.
Those were the fundamental facts of it.
I rested my head against the bus window, trying to stop my stomach from swimming and heaving, studying the tiny greased honeycomb prints of other people’s skin on the glass. I watched the sunlight thin under gathering clouds and reached for my belly, longing for the solid, reassuring curve of pregnancy and life – instead feeling fabric and loose, scooped-out flesh. Evidence of that life released into the world, my genie out of her bottle. And now I wished and wished and wished.
The panicky stuff had started small – the hours lost to finding my phone (in the fridge) and my keys (in the door). Those things might have been fine, the kind of thing a person does when they aren’t sleeping enough, but in the back of my mind I recognized the pattern in it all – the way my thoughts splintered and the tears came and any light in me felt dimmed by a choking smoke. But I couldn’t dwell too much on patterns and pasts because there was too much going on, what with the nappies and the feeds and trying to quell Mia’s tears and my tears and the anxieties of other people when they said to me How can we help? as I forced a smile and struggled to find an answer for them.
I got more frustrated and panicked as the words people spoke (mother, mother-in-law, sister, friends and other in-laws) rang hollow, fell flat, downright collapsed on the road to meet me.
Pavlova and lasagne? How lovely! It was kind of them, honestly it was, to think that they could change things with a meringue and a béchamel. They weren’t to know that, along with so much else, taste had been blunted in me.
The letters people wrote were sending me into a tailspin. The last time I’d even got a letter, in proper ink on paper, had been after Dad’s funeral. After someone had died, for God’s sake.
One of them started, ‘Of all the people for this to happen to …’ It made me think of a film I once saw, ‘Of all the gin joints, in all the towns, in all the world …’ People were amazed by the news. Privately relieved, some of them, I think … because statistics had to happen to someone. That’s the nature of the beast. My misfortune kept them safer. At least some good was coming of this.
But none of them did anything. None of them changed anything.
I wanted to throw up on the deck of that bus, like it was the only way I would rid myself of that grinding, persistent angst.
Fat drops of rain had started to fall and I was glad of it. I would be able to wash my face in them. Feel their chill on my skin.
As my stop approached I made my way to the top-deck stairs. The driver braked suddenly, before the lights and before the stop, and if I hadn’t been holding on so tight I would have fallen headfirst. A double tragedy, people would have said of our family. And then, when Mia was old enough, they would have said stupid things about chance and randomness and accidents – things they thought would reassure her. Leaving her equipped to deal with her mother’s death-by-bus-stairs.
A ridiculous balancing of deaths, one stupid but fast, the other lifelong, grinding and airless.
I had thought about running away, every single day since diagnosis. I had a credit card and phone – all that I needed to set up life elsewhere.
She loved you, they would tell her. She just couldn’t … some people simply don’t know how …
It must happen all the time: leaving it for someone else to deal with, telling yourself that someone else will be better equipped to meet the needs of the child. Believing it too, maybe.
Would you teach yourself to forget their face? Would that be the key to it?
My feet made hollow, violent hammering sounds as I ran down the stairs, unable to disembark quick enough into the rain, people on the lower deck looking alarmed and suspicious as I banged at the closed sliding doors with flat palms; Get me off this fucking bus! I couldn’t breathe. I was going to be sick.
Chapter 2 (#ueb14dd0a-e299-5bae-b9a3-20dc9be1ac8e)
All the windows were opened wide in the main meeting room of Cystic Fibrosis Now’s HQ. It smelt of cleaning product and the kind of damp and mossy earthiness that emerges from old walls with the onset of rain. The lighting was stripped and white, headache-bright. Chairs were arranged in a circle, ten or twelve in total perhaps, and the carpet was office-block blue-grey. The few people who had arrived before me stood in pairs. Were they officials who knew what was what, or were they new parents like me? I twisted a button round on my raincoat, as far as it would go, wondering when the threads that anchored it might snap, considering what would happen if I didn’t have the strength and the words for the strangers in that room, if I left that room a few hours later with nothing changed.
I searched the room. A tea urn on a trestle table. Everyone congregated around tea. It gave you something to do while you found the words. Make the tea, drink the tea or beat the walls and chew your fingers. I went to the table and began to make tea I didn’t want.
Teaspoons knocked on the sides of mugs and biscuit wrappers crackled. Conversation was at a constant low murmur, as if a church service was about to begin.
‘Can you pass the sugar, please?’ A woman leaned across the trestle table and touched me on the sleeve. She was petite and she carried a plastic mac dripping rainwater in the crook of her arm. ‘I know I shouldn’t, I’m trying to lose a bit,’ she said. I felt my shoulders drop as she smiled and the thin skin beneath her eyes crinkled to reveal pale, unblended smears of make-up – the kind applied to cover dark shadows. ‘But I can’t do tea without it now.’
Sugary tea is what they brought me after I was sick in that hospital clinic. They let me finish the tea, and then the lessons began. Administer this, administer that, was about the shape of it. Administer medicine to help her absorb nutrients because her digestive organs are clogged with mucus. Administer physiotherapy to get rid of the mucus on her lungs. Administer antibiotics to protect her from the ravages of environmental bacteria that might stick in the lungs and cause damage. By the end Dave had taken copious notes, even drawing a bar chart at one stage. He was strong when it came to administrative tasks so I suppose it made a kind of sense for him to pretend his daughter was a problem that might be solved methodically.
I passed the sugar bowl and smiled. ‘Are you a …?’ I tried, faltered because even memories of numbness lodged in my throat like tickling kapok.
‘Parent, yes. I’ve got a one-year-old boy.’ She smiled. ‘With CF, obviously. You?’
‘Two-month-old girl. Just diagnosed.’
She put down her cup after dropping in two lumps. ‘Amazing you’re here. I was still weeping in my pyjamas at your stage. My little bugger didn’t sleep at all, which made things ten times worse.’
‘How is your little boy? If you don’t mind me asking?’ I asked her the question before I realized I didn’t want to hear the answer, at least not if it was about hospitals, or worse.
‘Doing very well. Started walking the other week and it’s adorable: he looks like a penguin. Kind of tips side to side.’ She put her arms on her side and moved her neck, and we both smiled.
‘What about his medicines?’ I said, emboldened.
‘Oh, spits them out, hates them, but you find a way to get them in. My husband covers that kind of stuff. Amazing how creative you can be. It’s a shame he’s not here tonight, but he’s got a rotten cough and nobody needs that from us. He hates missing things like this. What’s your partner like? Is he doing OK?’
‘Endlessly practical, my Dave.’ I smiled weakly. ‘He’s got a list for medicines, a list for before breakfast, one for after breakfast. A list to keep track of his socks. He loves making lists.’
‘Sounds useful to have around the house.’
‘Yes, he is. Tonight he’s at home training his mum to look after Mia …’
‘Wow.’
‘It’s so he can go to football. He didn’t want to come here. Says he’d rather talk to his friends than a bunch of strangers.’ She raised her eyebrows and I worried then, about being disloyal. ‘Don’t get me wrong … I don’t want to be unfair. Being so practical is the way he’s always been and it definitely has its uses. His ability to categorize and look at, you know, what really matters, took the stress out of organizing our wedding. I don’t always agree with … anyway, the real thing here is that he wants to take Mia swimming at some point. It’s on one of his lists.’
‘Oh, that’s good,’ she said, dunking her biscuit. Her face was soft and kind and calm and being like that seemed such an impossible achievement in the circumstances that she was god-like to me. ‘It took me and my husband ages to work out what we were doing.’
My fingers traced a seam inside my pocket, feeling its ridge, searching for another thread to unpick as I fought the urge to grasp her arm and say, I’m so glad you said it takes a long time because I’m still waiting, I am. But I held back because I wasn’t sure whether by ‘doing’ she meant the practical stuff or the emotional stuff you ‘work out’ together as a couple.
To talk about being a couple with someone I had only known for a minute might be too much, too intense, but I wanted her to say more so I said, ‘Sometimes I’m not sure how much my husband gets it … I mean, at the moment, you know. As we work out … what we’re doing.’
Dave was the one who, in that clinic, holding his full cup of sugary tea, had said, How do you cure it? And I’d felt so sad to watch the penny drop. He wasn’t one for in-depth research at the best of times and after we’d got the call, he’d been the one to say, It’s probably nothing. And I’d tried to believe him. Then, in that room, I’d wanted to hold his hand when his eyes filled with alarmed tears as the consultant said, ‘There is no cure.’ But his gaze was fixed, watching the moment of impact when they said our daughter would have a record with them for life.
And then he asked for a pen so he could take some notes.
I put my mug down on the table. ‘When the consultant – you know, the consultant at …’
‘The hospital?’
‘Yes, the one at the hospital, but the one specifically at …’
‘Diagnosis?’ She looked up at me, hands curled around her cup, chewing her biscuit thoughtfully as I spoke.
‘She told us to get rid of our fish tank because the pump aerosolizes bacteria from its stagnant water. She told us to get rid of it at the same time as saying we should make sure Mia avoids mud and wet sand and lakes and ponds and rivers. I mean, it felt like she was saying avoid life. Avoid fun.’
‘It’s all a balance.’
‘Dave said maybe we could hide the tank in the roof. Practical, I guess. But when bacteria is out there, I mean, when something is out there, it’s out there and it can do damage. Isn’t that right?’ I unbuttoned my raincoat from round my neck to make space for breath, for words. ‘So I said, Dave, let’s throw the fucking fish away. I thought, you’ve just been told your daughter will live a half-life and most of what she wants to do will be off-limits and all you can think about is where we house the fish?’
‘Hey, hey,’ said the woman, laying down her mug and grasping my arm. My eyes stung and my cheeks tickled where they were damp. ‘That’s men. Isn’t it? Not to be a feminist or anything, but they do tend to take their time, you know, processing things. That’s how they are.’
A hand held at last.
The rest of the words I wanted to say were desperate to get out of the airless place they had been living inside me, but I kept my mouth shut, sealed it all in, all the reckless damage those words wanted to do to me.
‘You should help yourself to a couple of those biccies,’ she said. ‘The sugar will do you good. But come and find a seat first.’ She led me to a chair at the circle. ‘They’re about to start.’ I looked round, to smile and thank her for her kindness, but her attention was already turned to her phone and to finding her own seat.
I rubbed at my tired eyes and wiped where mascara had run with the pads of my fingers, remembering why I hadn’t worn make-up in weeks.
Another woman walked into the room at the kind of speed that suggested her day had a momentum that could not be broken. She waved a greeting at someone and settled down in the circle with a clipboard. I laid my coat on the back of my chair and smoothed down my T-shirt, canary yellow – too bright, too try-hard in a room of people shaking off navy rain macs, brushing down grey trousers, adjusting khaki suede boots and pulling out black pens from dark bags.
‘Welcome to our biannual new parents’ meeting,’ said the clipboard woman loudly and abruptly. ‘My name’s Joanna and I’d like to thank you all for coming, both those for whom the experience is still very new, and those who have lived with cystic fibrosis for a long time and are here to show their support tonight. We do appreciate you taking the time to help newly diagnosed families find a path through what can be a very challenging period.’
I looked over at the woman I had cried in front of and she gave me a thin smile before gazing out at the rain still hammering the window panes.
Joanna swiped at her ponytail. ‘A bit of health and safety first. Our cross-infection policy is very strict. For the benefit of newer parents I’ll quickly go over it. The longer you have cystic fibrosis, the more likely it is that your lungs will become colonized with disease-causing bacteria, some of which can become resistant to antibiotics and get harder to treat. We don’t want those infections passing from one patient to another. That’s why people with CF can’t mix.’ She adjusted the position of her biro at the helm of the clipboard. ‘It’s very important to understand that indirect transmission is a possibility too because certain bacteria can survive for hours, sometimes even days, on clothes and skin and surfaces. So I know it sounds rude, but we encourage you not to shake hands with fellow parents because you may be the unknowing vehicle for some nasty bugs. Use the antibacterial gel provided when you leave the event. I don’t want to sound grim but we think it’s crucial that we get this bit right.’
Everyone adjusted themselves for comfort and checked their phones one last time.
‘Onwards! I want the agenda to be driven by you. Let’s start by discovering what your main concerns are.’ She motioned to a man in khaki cargo pants and a black T-shirt. ‘Mark, perhaps you could expand on what you were saying to me the other day about diagnosis being a steep learning curve?’
Mark looked to be in his mid-thirties and losing his hair. He cleared his throat and sat forward on his chair, scratching his forehead, talking to his lumpy leather boots. ‘There seems to be so much to get your head around. What I’d like to know is how you tell a normal cough from the kind of cough that might signal an infection?’ He caught the eye of a few people around the circle, waiting for an answer. ‘I don’t know … that’s it, I suppose.’ I could see the bright but shy flicker of hope in his eyes as he voiced a concern that until then had probably circled his head like a bat at night with the relentless pit-pat flapping of wings.
