in my last post, I explained how I felt isolated from the machine-like, normal, world outside of my illness, and so, I thought it would also be important to explain how I can feel isolated from my own community at the same time
Throughout my whole life I have, consciously, met two other people with Cystic Fibrosis.
Because of the faulty mucus we create, little bugs that would be harmless to healthy people, can create chain reactions in our lives. Little lung infections snowball into pneumonia and within days they’ve awoken a black hole and we have no choice but to fold to their demands. We then depend on mechanical antibodies in the forms of drugs and antibiotics, but because we have been taken these our whole lives, our personal little germs have become stronger day by day. Like villains in comic books, they mutate.
Usually, in our lives, every infection gets worse, and every treatment gets harder.
The danger comes from the possibility that adult patients may pass on their now-drug-resistant bacteria to younger, and in a way, purer patients. This illness comes in so many different shapes and sizes that we already all experience different degrees of CF, and what makes each experiences very different is how many infections one hoard’s over the years. So, in a way cross-infection is like fast-forwarding your fall from health.
the history of cross-infections is a dark subject in itself…
In the 80’s and early 90’s there were summer camps specifically for kids with Cystic Fibrosis. The dream behind this initiative was to help kids connect with each other, but as we know, the road to hell is paved with good intentions. In these camps we saw hugs become translators of death, we witnessed that simply sharing toothpaste could become a weapon against some, it is where we understood that staying in one cabin for two weeks could change the future for many children. Without realising it, these camps became breeding grounds for pseudomonas and cepacia and the lives that were contaminated, were probably never free again.
(there are a few infections that we have no cure for to this day)
These camps had initially been moulded to help strengthen patients whilst fostering an atmosphere of adventure and fun that distracted from the differences of our realities compared to our peers. Scheduling was structured to include time for therapies and aerosols. The activities were physical and focused on endurance instead of power, whilst always keeping the games away from mud and dirt. In other words; joyful physiotherapy. The food was high-fat and covered in salt, which to be fair would’ve been enjoyable as a kid.
french fries were religion in my community
It was a dream, a hope when we still didn’t know a lot about the illness. But as science pushed through the mysteries, we understood that the only people that could understand us were also our biggest threat. To put it simply the dangers of cross-infection between our own feeble and wet lungs were far greater than anything we could do for each other.
Since the 90’s we have come a long way and CF patients take the responsibility upon themselves to not cross paths, understanding that what we have in our lungs could actually hurt others who are trying to survive just like ourselves. The fear of truly harming a child terrifies me. It has in fact, convinced me to avoid all social gatherings that are specifically about CF. And I know many other adults in my position, who have done the same.
A rule that is also applied to medical conferences. Organisers are usually aware if there are patients who decide to join and they are obligated to warn CF patients about each other. We live by the 6-foot rule. A little bubble of safety.
a concept not too dissimilar from the social distancing we see now…
I have friends who have CF, but calling them friends is a romanticised illusion of what I actually have with them, they are penpals. They are all halfway across the world, far enough to know I will never be tempted to say “fuck it” and go see them.
But even without ever meeting them, I know they understand how I feel.
And I know they understand how I hurt.