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 be fine.’
My eyes stung, staring at him like that: like I didn’t want to miss anything about that moment. The idea that she might not …
I looked at his suit and how well it fit him, at his clear skin and dark eyes, at the clean and scruffy coal-black hair.
‘But is that true?’ I asked him.
‘I don’t know you well enough to bother lying to you.’ He had a smile that was generous and full of china tea-cup white teeth.
I laughed and sneezed, covering my face. ‘Sorry, I’m getting a cold. It’s not bad but …’ I scooped a plastic bottle of antibacterial gel out of my handbag and poured it into my palms.
‘I should use some of that too. You shook my hand.’
I looked up and we locked eyes. ‘Sorry, I forgot. We weren’t supposed to do that because of cross infection. Sorry.’
‘They’re only being careful. It makes sense: as a charity, as an expert in the field of CF, it’s their responsibility to give you the worst-case scenario. But just because something could happen, doesn’t mean it will. Right?’
‘Right.’ And I smiled again because there was something about him that insisted on it.
‘The research is still being done and it’s not conclusively proven that bugs can transfer from patient to patient via a third party and survive long enough to cause symptoms. It’s a bit of a stretch, in my opinion.’
I saw a loose thread at his collar and a patch of stubble he had missed.
‘I’ve read some of the papers,’ I said. ‘There actually is some evidence to suggest …’ He raised his eyebrows as I spoke and it occurred to me that though I may have read a lot, he had experienced CF for years longer than I had. Of course he knew more. ‘In any event, you really don’t want to take my cold back home to your daughter.’
He smiled. ‘No, I do not. She’d kill me if she missed any more school.’
I poured antibacterial gel in to both our hands. I rubbed it into my palms and then around my fingertips as the CF nurses had taught me to do. My broken cuticles stung.
‘I suppose people aren’t used to meeting without shaking hands. Without touching,’ he said. ‘But it can be done. Life with CF can be done. You just have to find new ways.’
He looked at me then, like he recognized me. Perhaps I looked like someone from his past. I had one of those faces, lots of people said it.
Joanna’s voice tore through the moment. ‘A few final things, folks.’ She held her arms aloft and called out again to address the still chattering room, ponytail swinging obediently in her slipstream. ‘Please, folks! A moment of your time before we have to lock up for the evening! Thank you all for coming. There is more advice and further tips for getting involved in fundraising on the website. And our annual conference is coming up in the last week of August. That’s in only six weeks’ time and we’re still hoping that the parent of a newly diagnosed baby will speak. Please do give me a shout if you’re interested. We want to make sure that all the research talks are balanced with the real-life stories of people actually living with the illness. Thank you, and good night!’
‘I need to go,’ I said, glancing at my watch face. Mia would need a feed.
‘Me too.’ Richard walked with me.
‘Is your husband babysitting?’ he said, opening the fire door for me to step through.
‘Kind of. Not exactly. My mother-in-law. She’s trying, I guess.’
Outside the rain had stopped, the rush-hour traffic had thinned and soon the sun would set. The air was still warm but clearer for having been washed by the rain.
‘Let me get you a taxi,’ he said, as he tried to hail one without an orange light.
‘No, it’s OK. Thank you.’
‘You should think about talking at the conference. You’re the kind of person they need.’
‘The kind of person who rambles about how they don’t understand anything any more?’
‘Someone who’s honest, and brave, but doesn’t know all the answers.’
‘But I don’t know any of the answers.’
‘Exactly my point.’
My stomach knotted. ‘I have to go. It’s getting late.’
He touched me lightly on the sleeve as I turned to leave. ‘My daughter and I are very close. There’s nothing I wouldn’t do for her and CF has given me countless opportunities to fight for her. To make her proud of me. In a strange way, it’s been a gift. Be brave. Go out and fight for your cub’s life.’
He looked down at his feet then, overcome by emotion or else