CYSTIC FIBROSIS
Five Feet Apart and My Reality
The controversy of cross-infection between people with Cystic Fibrosis is still a hot topic
Five Feet Apart, a simultaneous book and movie package, was a hot debate topic before and after the release date in 2019. From the moment the trailer was released, mixed reviews emerged from the online Cystic Fibrosis (CF) community virtually overnight, and they crossed a wide range of emotions.
Some held the belief that any publicity for CF is beneficial. Five Feet Apart gained attention and public understanding — sure the details weren’t quite right, but that’s just Hollywood.
On the other end of the spectrum were those appalled by the very concept of Five Feet Apart. Holding the belief that no good can come from any publicity with the balls to suggest that people with CF may stand in the same room, let alone touch.
The issue of cross-infection has been the subject of a raging debate in the CF community for decades. Guidelines, also known as infection control protocols, differ from country to country, and even from clinic to clinic.
But this wasn’t always the case.
Born in the early ’70s, I grew up surrounded by other children with CF. We played together, shared hospital rooms, and our social highlight was always the annual camp. CF Camp was a place where we were no longer the only child who had to take handfuls of capsules before we ate, no longer the only child who couldn’t play because it was time for physio. Instead, those things that marked us as different were our shared normal.
In the early ’90s, cross-infection was a buzzword I dismissed. At the time, my housemates also had CF. As part of their duty of care, my health care team warned that cross-infection was inevitable with my lifestyle choices. That cross-infection would play a role in the decline of my lung function, and subsequently, my overall health.
I accepted that cross-infection was inevitable and did nothing to prevent it because the risk had rewards. My CF family were my tribe; no-one knew me better than they did. Our shared experiences created a bond closer than friendship.
When Burkholderia Cepacia reared its ugly head, whirling through our tight-knit community, it fractured life as I knew it. Cross-infection, the buzzword I’d managed to ignore, became a much bigger deal. We were segregated, classified, and ranked by the bacteria we cultured — into those who had Burkholderia Cepacia, and those who did not.
The segregation designed to stop cross-infection saw policies designed that treated some people as walking health hazards. They were not welcome on the same clinic day or invited to officially organized events and fundraisers.
This time I paused to take note. But I choose to view the cross-infection guidelines for what they are.
Guidelines.
I work within those guidelines by following good practice and not taking stupid risks. Still, ultimately, outside the hospital and clinical settings with a duty of care to their patients, the decision to remain in personal contact with my friends with CF is my own.
Other people with CF are my family, my tribe, an essential part of my identity, my sense of self. I was not and will never be prepared to cut them out of my life altogether. While our social gatherings were a risk, they remained a known, and therefore manageable risk.
Despite all these preventative measures, which can include cleaning and sterilizing clinical rooms between patient visits, even those people with CF who have never had known contact with another are still contracting Pseudomonas, Burkholderia Cepacia, and other infections.
Is it the fault of the cross-infection guidelines?
Are even these extreme measures not enough?
Here the answer is more clear-cut, bacteria that thrive in CF lungs also grow in the environment. Naturally.
People with CF might be able to avoid one another successfully, but they can’t avoid life.
I cannot begin to imagine the isolation of growing up feeling different and never seeing a reflection of yourself in another person. Without my CF friends, my mental health would have suffered.
Another person with CF is a known risk, one that I can manage.
Despite personal opinions, whether you are a rule breaker or someone who follows the guidelines to the letter, the desire for contact, for your tribe, is an inbuilt human trait. We need to thrive, and as much as an online community can try to substitute, it will never replace personal interactions.
Sandi Parsons lives and breathes stories, as a reader, writer and storyteller. She believes that every child is entitled to see themselves accurately represented in literature and the arts.
Sandi’s creative nonfiction has been published in MiNDFOOD and Frankie. She is a contributor in the Growing Up Disabled in Australia Anthology.
You can find her on the web or subscribe to her newsletter & recieve a free copy of The Last Walk & Other Stories
