“Cystic Fibrosis (CF) is a genetic condition affecting more than 10,800 people in the UK. You are born with CF and cannot catch it in later life.” Cystic Fibrosis Trust
Before going to University and still certain that I could change the world (single-handedly) I volunteered with a charity that supported parents with disabled children. I met the volunteer co-ordinator, Davina at a predesignated spot and she told me all about the charity. This was in the days before safeguarding and DBS checks so I happily got into her car to go and met the parents I would ‘baby-sit’ for (not my words!) All was going swimmingly until, as we walked to the house, Davina told me that she had got involved in this charity because two of her children had died and she just felt that she needed to put something back by supporting parents in need.
I’m aging myself here but this must have been 1982/3 and she was evidently reconciled – if deeply sad – about this shocking thing that had happened to her.
“I got all kinds of support from all sorts of people. I was devastated of course, but I was expecting it. They had CF and their prognosis was always terrible.” Davina walked with purpose onwards towards the front garden of the house we were visiting.
“Does it help knowing that? That they had a terrible prognosis?”
“No,” she said, “It didn’t help at all. But the schedule of caring for them was unrelenting. Day and night I would have to help shift the mucus from their system and their hearts and lungs were compromised. Some families get luckier – their children are less severe, they live a little longer but they still die sooner than they should.” Davina sighed and then she put on a bright smile.
I didn’t know what to say. But she was a woman of purpose, and strode towards the house…and I trotted behind hoping she couldn’t see the waves of sadness I felt on her behalf.
The family I met lived on a housing estate called Bransholme, and their house was absolutely boiling hot. “Sara likes it hot.” I have always been a cold person but still I found myself removing layers. The job I was to undertake was to come back on a Saturday night and look after Sara whilst her parents went to the pub. Sara had a learning disability and I learnt a very important lesson: in spite of the myth that everyone with Down’s Syndrome is jolly and loving, she was a royal pain in the arse. I looked after her 3 weeks running and each time she basically wanted to eat her body weight in confectionery, biscuits and cake – and I’d been told that she absolutely could not have these items because she had a very bad heart and was on a diet. This was not something Sara was interested in at all. In fact, I spent the whole evening trying to wrestle Mars Bars and digestive biscuits our of her sticky paws (her fingers fat with poor circulation) which was followed by mass weeping, and tantrums. I was very relieved when her parents arrived home. And even more relieved when a few weeks later I went to university and could, with total honesty ,say that I wasn’t available to look after her any more.
I have 3 degrees (I know, greedy) and my first is in English. It’s probably hard to believe this given this piece of information but I was a working class kid on my first course (and the first in my family to go) and I was very much out of my depth. It was a well-subscribed course but even so I was staggered to discover that two people had Cystic Fibrosis, both women Helen and Anna. They were very different: the first, Helen, was a tiny waif like girl, who was bent almost double and who shared with Sara the bulbous fingers of someone whose heart was failing. Helen’s hands seemed huge relative to her body, and as I was still in my changing the world mode, I tried very hard to make friends with her. She was frail but I wittered endlessly as Helen walked with me to my room and we spent an awkward hour over cups of tea. She was in my writing class and she was brilliant. She had lived a hard life attached to machines. Helen said that her dad was a doctor and he could not help. I thought about this for a long time – imagine understanding the body and medication and actually being totally helpless.
I remember one of Helen’s poems still – an extraordinary feat for an 18 year old, about the marking of time and how it was slipping away. The poem drove through a rhythm of the heartbeat, and the machines that kept her oxygen levels up through the night. And still I did not anticipate what was inevitable. Half way through the spring term Helen died and the writing tutor told us in hushed tones. I was sad, but as she had been absent for a few weeks and as my overtures of friendship had been well-meaning but futile, I think I just shrugged sadly and moved on.
The other girl with Cystic Fibrosis on the course, Anna, was a whole different kettle of fish. She had a reckless attitude to her condition but she enjoyed much better health than poor Helen: if death was was going to get Anna she was going to make sure she had enjoyed large quantities of alcohol and a number of illegal substances before she went. She was mostly well – but the diet, the lack of sleep, the cigarettes (unbelievably) and the occasional e meant she had periods were she disappeared, and retreated to her parents’ home to recover. I don’t know what happened to her – Anna graduated like the rest of but as that was in 1986, I expect she is no longer with us. That was 31 years ago and she’d be 52 if alive. Nowadays the mean age for survival with CF is 41 in the UK so my feeling is she has gone the way of all things.
It was a strange business encountering this condition so often when I’d never heard of CF and then seemed to find it at every corner. A part of me wanted to share what I learned about it with Davina, so I rang her about volunteering offering once again look after the difficult Sara.
“Davina here,” she said, bright and breezy.
“It’s Mary – I wondered if Sara still needed looking after on a Saturday evening?”
“Oh love,” she said, “Did no-one tell you?”
I knew what was coming, “How did it happen?”
“She just didn’t wake up.”
“Her heart, love. Her mum and dad are fine though. They knew it was coming. Want me to find someone else?”
“Probably not worth it, I guess?”
“I’ll have a look and get back to you,” and with that Davina signed off and why I thought she would open up to a woman of 20 I couldn’t say.
Davina never got back to me and I then got a job at a printer’s.