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.
There’s no magic wand.
You should get an early night.
Did you speak to your sister yet?
Things will seem better in the morning.
I won’t be out late.
‘I feel lonely,’ I said to the empty floor at the centre of the circle. The words took me by surprise. ‘And I feel breathless, all the time, like I can’t keep up with everything that has to happen to keep my daughter healthy. It’s only been a few weeks – God, she’s only two months old, but already it feels like a lifetime. I feel like I’ll never get to where I hope I’m going because that place doesn’t exist yet. There’s no end in sight. This is our life now. Constant medication and physiotherapy and protecting her from endless threats hidden in normal places. And then the waiting … waiting for the day it gets worse and worse.’
On another day I might have stopped there because I saw the faces of the people around me and one person looked away from me, like she was embarrassed, but I didn’t, I couldn’t. ‘I … I don’t know if I can live like that. And so my question is, if I don’t know how to live with this illness, well … how am I supposed to teach my child to live with it?’
A crow cawed outside. Maybe it had been there a while, but we all heard it now in the silence I had made. The charity worker crossed her arms as she mused on how to translate my sentences into a single penned and capitalized word. Several throats cleared and for a moment I wondered if what I’d said would be passed over. Too awkward, too ruined. I felt bad and exposed and a failure for not having the right words to share with these strangers.
‘That’s easy,’ said a man in a blue suit sitting opposite me. His voice was clear and deep, he was clean-shaven, broad-shouldered and slim, his shirt white and his tie orange. He held a pen and pad and nothing else. He looked so tidy, so unencumbered by his life.
‘Teach your child not to be an arsehole,’ he said. There was an amused ‘Ha!’ from somewhere inside the circle. ‘That matters. And then work to cure CF. That way you’ll raise a healthy adult with half-decent manners.’
A relieved ripple of amusement travelled the room and everyone looked gratefully in his direction. But my heart crumpled into disappointment at his flippancy.
‘And while you’re waiting for their adulthood and the arrival of their manners and the cure,’ he said, seemingly emboldened by everyone’s laughter. ‘While you’re waiting for all that, I suggest you drink vodka and dance to Phil Collins.’
More laughter filled the room. Joanna uncrossed her arms as if she was enjoying herself too, and meantime I was even more annoyed.
‘And what are you supposed to do …’ I said over the laughter. ‘What are you supposed to do,’ I said, louder now, ‘if mixing a bottle of antibiotics feels like quantum physics because your brain is exhausted from being up all night worrying? I dream about flowers on her funeral casket.’ My words were piling out at speed again, and they were getting louder, so that by the end I was almost shouting, as if this was my last chance to ever be heard.
The Scotswoman nodded gently. ‘It’s all right, pet, we get it,’ she said.
The man smiled and then his brow creased. ‘Sorry, I didn’t mean to be crass. I’m not denying it’s hard. It’s very hard. All I’m saying is, there is light. You can experience being a normal parent.’
‘But how? How are we supposed to dance around knowing how badly all this is going to end? I don’t see it.’ I slid forward on my seat, confronting him in a way I had never confronted anyone before. I wanted to know how and why his smile was so full and so very alive.
Everyone in the room seemed to hold their breaths in one collective lung-filling exercise.
‘I dance to Phil Collins in the knowledge that all my friends and family are going to die. All of us. Life is short and Phil is a gift.’ There was more laughter as the man looked to me for a response and, perhaps seeing something in my face, changed tack. ‘You need to remember that it’s different to the way it was even five years ago. There’s a lot of hope now. There are so many new treatments coming out of America and they will be game-changing for the CF community.