I call Cystic Fibrosis a series of small brutalities. But small brutalities multiply and before long you’re deep within Trauma Land. On Monday, my Mum and I returned to the Royal Children’s Hospital for a site visit after it was demolished last year and it feels as though I’ve abandoned my tribe.
I said a tentative goodbye last year when I saw the buildings being torn apart; seemingly eaten by strange looking machines. I hadn’t been into the bowels of the Royal for twenty-four years, and the bones of my childhood resembled a modern ruin. It was the place where I fell in love for the first time. So many firsts and lasts. I cried. A lot. I ugly cried in front of confused workmen who so kindly asked if I was alright.
Monday was something entirely different. There was very little sadness. Instead, the encounter was strange and tender, with stories shared (mostly stories of sacrilege and mischief), hugs with the two lovely women who organised our visit and a chaplain I know from the P.A hospital.
I grew up in two places; my familial home and the Royal Childrens Hospital. My earliest memory is looking through the bars of a prison, but I now know that I was gripping onto the bars of my cot, either crying for my mother or a nurse, or simply because I was crotchety and didn’t like being contained.
If you want the definition of a double life, then read on.
Living with CF was akin to being a spy. I would live my ‘normal’ life at home, have my ‘normal’ friends at school, and do ‘normal’ stuff. Then I would go into hospital for a few weeks at a time where I had my hospital life complete with hospital school and my CF friends.
I would turn it on and off at ‘normal’ school when I was with my friends, in social situations, and especially when I was at school. If a friend died, then I would go to school as normal the next day and try to focus on my schoolwork. Study was my escape. Throughout primary and secondary I basically had to keep my shit together – more for other people than myself. And so there was home and there was hospital. But like any good spy, I could seamlessly go from hospital to ‘normal’ with barely giving it a second thought. It also helped that my illness was invisible.
Although I’d be physically better, I’d often start back at school spent and raw. Any admission had the probability to cut you to the quick, especially when a friend had died and often in horrific circumstances. In hospital I had my tribe. And it was tribal – I’m not using cultural appropriation here. We had elders, there was a hierarchy, there were short lived disputes, and we were unusually close.
I doubt my school friends would have known the gravity of my situation, but I really didn’t want them to. Ever the actress, I was always ‘fine’. I’d rocket in to the school grounds with my big voice, drop my bag and I’d be back to myself. It never failed to please me when I returned to school, because I could get lost in the minutiae of being a teenager – music, boys, exams, who was doing what. I was just like every other school girl, and that’s how I wanted it to be. That’s how I needed it to be. Adaptation was one skill I had mastered by the time I was six.
And so through all phases of my life until I turned eighteen I was tethered to this place. As I stood with Mum I felt a gentle cadence flow through me. The place was silent thanks to a public holiday, so there were no people, no noise, and no dust. That morning I was trying to think of something I could take with me to the site, so I took a piece of tumbled rose quartz and after a little prayer of thanks, I threw it into the pit. Half of my heart will always be there, so I thought that fitting.
If there’s a feeling that describes our visit on Monday, it would be peace and the sense of an ending*. Not closure, because closure doesn’t exist in the tumult of grief.
I had a friend tell me this week that I am ‘terrible at dying’; tell me the odds and I’ll fuck them up. I’m happy with being an under achiever in that field and an outlier in others. Rest easy, RCH. And for the thousands of souls who died on that site, I will remember you.
*Julian Barnes has written a brilliant book with this very title.