Published as ‘Thursday nights’
Big Issue, Australia
Issue 595 (Sept 2019)
A few months ago, the young-love-complicated-by-illness film Five Feet Apart hit the cinemas here. It’s the story of two young adults living with cystic fibrosis (CF) who fall in love but are challenged by the risks of cross-infection, forcing them to stay a certain distance apart from each other. I’m generally a sucker for tear-jerkers, happy to pay for a cathartic cry in a darkened cinema. But I have steered away from it so far; though the movie is fiction, both the distance rule and the emotional rollercoaster of life with CF are far too real for a group of mums like me.
It has been over ten years since our first Thursday night mothers get-together. No one can recall the exact year—was it 2007 or 2008? —but we can identify it by certain defining features of the time. Jon was healthy and playing soccer; Murray wasn’t thinking about a transplant; most of our kids weren’t old enough to even date, much less marry or have babies; they were all still at paediatric hospitals. Coen was already doing it tough and Genevieve was singing, riding horses, and so alive.
We meet in small cafes; on occasion the owners have asked me casually ‘How do you know each other?’ They’re assuming a benign response, such as ‘through a mothers group’, or ‘we went to school together’. Maybe work or even church. I don’t quite know what to say or how to explain the meaning of these relationships. That we’re helping each other steer through the chaotic CF world of nebulisers, nasty infections and Medicare rebates? That we share frustrations with clinic wait times and the challenge of blindingly expensive ‘miracle drugs’? That we meet to help each other cling to the slippery hope we all depend on?
CF is complicated, unpredictable and infuriating. It is a genetic condition, passed down unwittingly by us mums (and the dads), and impacting most importantly on our kids’ lungs.
One Thursday night, years ago now, I poked at my pumpkin risotto while listening to Sue unpick months of confusion and frustration of watching her son’s lung function slide without an identifiable reason. Another month, a different Thursday, and we’re laughing as Lisa describes how her then-young son—who, like everyone with CF, needs a high fat diet—is the only kid at the birthday party ignoring the party pies and nuggets to munch on carrots and cut up apples. There’s more wry laughter over food battles with schools and zealous ‘healthy lunch’ teachers. My own trick for getting extra calories past teachers was to take the wrappers off Mars bars and cut them into little pieces to be less easily identified as verboten in the lunchbox.
A few years later we all sit silent around the table, heartbroken, as Dawn replays a conversation from earlier that week with her 14-year-old son Coen’s medical team. He needed a new set of lungs urgently. She didn’t know, the doctors didn’t know, how long he could wait. The lungs arrive in time, just in time, celebrated with tears, hugs and relief. They gift him with unexpected years.
But, equally unexpectedly, five years later Dawn is having similar conversations with the medical team and our Thursday nights are heavy and frightening. Tragically, there are too many unfixable problems this time and no transplant can pull Coen through. Transplants aren’t always successful, we knew this from watching Genevieve survive 14 months only to get an infection that she couldn’t overcome. Taking her in the prime of life, as CF does far too often.
Even though CF can have devastating outcomes, its impacts vary enormously between people—and over time. So, most of us mums experience weeks, months and years where our kids are healthy, not in hospital, not needing antibiotics, when the worry recedes. Over years of Thursdays we have celebrated boyfriends becoming husbands, great ATARs, intrepid international travel, dream jobs, first homes. Murray and Jon both went on to have transplants, marry and have babies. Last month there were more hoots of joy at the arrival of another baby from that generation. Normal, healthy milestones. At times, our conversations are ordinary, even pedestrian; we could almost be that group of school mums. Almost.
For my family, the camera is rolling on this film and—thankfully, knock-on-wood, fingers crossed, prayers offered—most of the footage makes me smile and lacks the heaviness of the Hollywood version. Two of our three sons, now 23 and 20, have CF. Of course, we hold the future gingerly, maybe the way we all should because of life’s unpredictability. But the fear and uncertainty usually sits in the background. Because the foreground—today, tomorrow, next week and next month—is full of possibility and hope.
Through it all, our monthly Thursday nights roll on. No kids allowed, because of the infection risks, as Five Feet Apart makes clear. But what keeps our kids apart, will just keep drawing us mums together.