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.
‘Yes, I worry about that too,’ said a woman hiding in an oversized cardigan, ‘but the other thing … the thing that keeps me up? Like makes me insomniac, and I’ve never been a great sleeper and now I’m like the world’s worst ever sleeper, it pisses my bloke off no end because I’m tossing and turning … The thing for me is the antibiotics? Everyone’s always going on about taking less of them, right? Because, like, you don’t really need them most of the time, right? You go to the doc and they’re like It’s a virus and they leave it because they don’t want everyone on antibiotics and making it so that none of them work. But what about our kids?’ She shuffled on her seat. ‘If our kids are on them a whole lifetime, to treat and protect them … well, they say it in the news all the time. What happens when the antibiotics stop working, like what Joanna said before about the bugs getting resistant. That’s proper bad news for our kids, isn’t it?’
The charity worker nodded her head. ‘Yes, it’s a serious issue.’ She stood up, pen in hand, and wrote BACTERIAL RESISTANCE and COUGHS on the whiteboard in cramped letters. ‘We’ll cover this. Any other questions to get on to the board?’
‘Does the physiotherapy hurt them?’ said a man quickly, the white-skinned bones of his knees jutting through torn jeans. ‘All that bashing at their chest to loosen the mucus in their lungs. You never know with a tiny baby. They cry all the time anyway. Our eldest saw me do it the other day and he started crying because he thought I was hurting his little sister. And then his little sister started crying. It was chaos.’
‘I think it’s so sad.’ A woman with a thick fringe and a broad Scottish accent spoke. ‘How are these kids with CF going to find a community to support each other when this risk of them cross-infecting each other stops them from meeting? I know we’ve got the internet, but it’s not the same as face-to-face. Seeing the whites of a person’s eyes, right? It’s lonely for them. Can we at least get them Skyping or something?’
CHEST PERCUSSION – HURTS?
The squeak of pen on whiteboard.
COMMUNITY/SUPPORT. The charity worker turned to consult her notes and I looked at those faces, wide and afraid, all their fears out there, swimming around trying to find which way up the surface was.
I understood it, I did, and yet most of their questions were practical and could be worked out by asking doctors and looking at the internet. I knew; I’d spent hours researching that kind of thing.
In the days after diagnosis Dave often found me in the dark parts of night gazing at the shining bright of my computer screen as if it were an open casket of jewels. The talk boards, news sites and pharmaceuticals headlines that kept me enchanted, appalled and gripped, an infinite reel of possibilities and answers and endings.
Cystic fibrosis sufferer Stacey marries her childhood sweetheart only days before her death …
One in three die waiting for a lung transplant …
The first time Dave found me like that, he sat with me and cried and said, Well, this feels like old times. The second time he found me, he kissed me on the head and cleared up the research papers at my feet. The third time he stood at the doorway and offered to make me tea. The fourth time he said he should cut off the broadband, like I was a teenager that needed to be told a thing or two. Then I wasn’t just sad, I was angry. But we have to do something, I’d said, gripping the duvet or my jumper sleeve or the skin on my arm. That’s when he said something like all we could do was try and keep her healthy, day to day, and that we should do something useful like enrol her in swimming lessons until the doctors told us to try something new.
After that, things mostly ended with me crying and him saying he’d put the kettle on and that we should talk again when I’d calmed down.
But we never did, and soon enough all the times I cried and he put the kettle on became one big blur and he’d pick a phrase to console me, one plucked from a carousel of options that turned and turned:
Are you all right?
I don’t know what you mean.
