I Started Talking About Lung Transplants Instead
"If you haven't, do me a favor and watch it this week as your homework"
Yesterday, I started answering a question about how I could avoid being too close to someone else with Cystic Fibrosis when there is no way to know you're accidentally near a stranger with CF...
And I started talking about lung transplants instead.
If someone has CF (or even a variant of it, as clinics are becoming more and more versed in seeing and treating the spectrum of lesser known genes that can contribute to our mutantdom), they are supposed to be 6 feet apart from another CFer.
This is why I often say, "Have you seen the movie Five Feet Apart?" any time someone asks why I have a particular scar or bionic part, because it's the easiest way of not sounding like WebMD.
And, if you're reading this right now, I really mean it: Have you seen it?
If you haven't, do me a favor and watch it this week as your homework (and then feel free to reach out to me with your thoughts or questions). It might help inspire more of this discussion and, in the least, goes a long way in a lot of us feeling a lot less alone because it really DOES get a lot of components of the illness right, but in a way that connects to other's empathy. It was the first and last time I'd ever seen someone on screen in a leading role with a feeding tube like mine, which was when I felt, firsthand, how much representation matters. (The next time you see a feeding tube on your big screen it won't be a prop one... It'll be me. Because our work here isn't done!)
The movie actually focuses on lung transplants a lot, so it might be worth reiterating that transplants themselves are such a fine balance of being "healthy enough' to survive the transplant- which means some people are still low-key lifting weights on oxygen while waiting for the call- but also sick enough to have no other option. The window is so narrow and so upside-down-world that you have to be super sick and also sort of super well, all at the same time, in order to qualify.
A lot of people think of CF and "lung transplant" and that's all that comes to mind.
They don't realize how many of my friends have had liver transplants instead of lung, or pancreas operations instead of lung, or full joint replacements in their hips (or spine like me) instead... or all of the above. Somehow, I've witnessed peers have a liver and lung transplant at the same time, or many a kidney transplant because of CF, or open heart surgery because of the strain it can all take on our hearts, or they've had cancer because - though rare- our cancer risk goes up exponentially when we have CF for whatever sciency-sounding reason.
The stereotype of "just a lung transplant" still persists (so they next time you hear that, feel free to kindly say, "Actually, it impacts lot of organs and bone health, so it's not always lungs that are transplanted") or we perceive a transplant as a "fix" or "cure" when most people say the popular and incredibly true catchphrase of: "Getting a lung transplant is just trading one disease for another."
Does it save lives, in no uncertain terms? If someone is lucky enough for it work (some of the most amazing humans who've ever walked this planet have passed during the operation, after thinking it would be what would save them): Yes.
Does it bring it's own new set of upkeep, problems, and the risk of not lasting very long? (The median survival after one is between 5 and 8 years.) You can guess the answer.
The 6 Feet Apart Rule used to not be a thing.
Before the 1980s, kids were able to make best friends with those who could understand at summer camps or CF support groups, until a epidemiologists realized that eventually-deadly bacteria (to us) were spread through 'direct and indirect contact; by kissing or holding hands, coughing, or by touching anything a person harbouring the bacteria has touched'.
It's one of the most tragic things about CF, when you think about... It is a disease where few can understand what you're going through except those going through it, but we aren't supposed to be around those who understand.
"At least half of people with CF harbour pseudomonas in their lungs and it's very hard to kill" is the bare bones about it, and we can't run or hide from it because it's literally... the earth. (Imagine that in the voice of Steve Carell's character in Anchorman saying "lamp").
"It's in drains, it's in lakes, in dirt," the president of Cystic Fibrosis WA was quoted saying, which basically means: Unless I stop showering, I'm always at risk. Some patients don't garden or swim in lakes because of these bugs (especially if they have open stomas like my feeding tubes) and some are more like me and are like, "Water IS living, so I'm not Gyllenhaal" (Guess the reference?)
But what happens if you're going about your daily life, living with an illness that many feel is "invisible" (especially when my cough is completely under control and my portacath-cleave is covered) and you don't realize that your classmate or colleague or Target-Lady Cashier is secretely another person with Cystic Fibrosis (and you inexplecibly accidentally makeout with them, because that's an obvious concern that happens to all of us a couple times a week)....
What do you do?
Hopefully you're enjoying this review study session because...
You're not going to like what I have to say tomorrow.
Part Two. More Tomorrow.
THANK YOU my Word Nerd friends and to all those helping this independent memoirist continue to work by upgrading to paid (which also helps my goal of gifting my every-weekday-writing for anyone who asks for a reading scholarship, no questions asked)….
I saw “Five Feet Apart” several years ago and it was very eye opening. How hard it must be to want comradery with others with CF but not being able to get close to each other😔
Over the years of following you, and many other cfer's, I've been able to learn so much more! I've lost many friends, one in particular I was very very close to. Close enough that I flew across the country (at her momma's request) to officiate her memorial and burial. I also have a very dear friend who received the blessing of a double lung transplant and proceeded to complete her Master's, Doctorate and is now a Doctor! CF is an individual disease, affecting each person differently. While it follows it's own path, I believe how an individual deals with it both mentally and physically can make a difference. You, my precious love, are one of those people who choose to fight, and live...LIVE!!! I respect you, I admire you, I love you beyond my ability to describe. I always will. I want to be available to you, dear Bailey, you fill my thoughts and prayers daily.