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. Your kid’s going to be OK.’
‘Yes, thank you, that’s useful,’ said the charity worker, cutting him off when I wish she hadn’t, but she’d picked an opportunity to slash through a conversation that was awkward at best and threatened to derail her whiteboard bullet points at worst. ‘There is indeed a wonderful pipeline of drugs in development. Let’s talk through some of the more practical things you’ve all raised, like physio and antibiotics and psychological support, and then we can end with the treatments on the horizon. I think we have a nice full agenda.’
PIPELINE OF NEW DRUGS.
The man in the navy suit and citric orange tie pressed the pen hard to the page of his notebook and wrote quickly, as if the words were too important to lose. I would have craned my neck to read them, had I been sitting closer.
As the event drew to a close everyone gathered back at the trestle table but I buttoned up my raincoat to leave. To return to Mia. To cuddle her.
I turned towards the door but the man in the suit and orange tie stopped me, holding out his hand to shake. ‘My name’s Richard.’
‘Ah, Flippant Richard.’ I held out my hand. ‘Cath. Pleased to meet you.’
He grasped mine heartily. ‘I bet you’re only slightly pleased to meet me, at best, but I am honestly pleased to meet you. And I’m sorry about earlier. I’ve been living with my daughter’s CF a long time. You find a way of looking at it, of living with it. But my way doesn’t suit everyone.’
‘I was probably a bit …’ I looked down, taken aback by his new humility. I saw his polished shoes and it made me wish I’d worn the red ones I’d bought while pregnant that were still wrapped in tissue paper.
‘My daughter is a teenager now. Black humour has probably become my … Anyway, I wanted to apologize for behaving badly.’
‘How’s your daughter doing?’
‘She’s doing very well. She’s healthy and … stroppy but happy. Her name’s Rachel. But what about you? Look … what I wanted to say in that discussion – and I didn’t, because I wasn’t sure it applied to the rest of them – was that you have to believe. Believe that your daughter will be cured. Be positive. Know this can end happily and then help make it happen. I’ll continue to pitch Phil Collins as a good soundtrack to that endeavour though. Some of his work, particularly with Genesis, is very emotional.’
I smiled as I turned the possibility of feeling differently about CF around in my mind, like I was examining the facets of a diamond. I looked back at him and his face was an invitation to say anything, so I told him, ‘Diagnosis felt like failure to me. Perhaps because the consultant looked like my old maths teacher and I always did badly in maths. She had exactly the same fringe.’ He laughed. ‘They told me my baby’s sweat test scores were in the nineties and eighties and the first thing I thought was, who doesn’t want 87 per cent on a test? But then they said those scores actually meant her symptoms would be severe. Requiring daily pills and antibiotics and physio. High scores equals bad results. Fail.’
‘Your world’s been turned upside down. I get it. What’s your kid’s name?’
‘Mia.’
‘Mia will be more than fine. You,’ he said, ‘will also
