I might explain that this actually isn’t my first column (having started my lifelong long dalliance with op-ed at the tender age of 13), or that writing often is the only thing in life that makes me feel free. As artistic director of a professional dance company and a dancer myself, pirouetting does much the same, although physical confounders sometime push me to the brink.
Maybe I’d tell you that neither writing nor dance — although equal components of my soul — hold a candle to the two other pieces that make up its entirety: My daughters. As a relatively young mother, and eventually a single one, raising my two ladies easily has been the greatest privilege of my life (adding their Papa to the mix years later was pretty cool, too).
I could tell you a variety of facts about myself, but my health likely would be last on the list. You see, even though writing, advocating and even vlogging about battles with wellness have been a secret passion of mine, it is hopefully one of the least interesting things about me.
Of course, in order to actually know one another, perhaps it’s easier to explain how we are similar, since relating often is the path to recognition. And even though I spent the better part of my 20s advocating for and living like a CF patient (after a late diagnosis), I actually am not the same as you.
That’s right. Plot twist: I am fundamentally different, because genetically I do not have CF. Despite years of searching and testing, my diagnosis eventually settled on something similar to, but inherently different from my many cystic fibrosis friends: Primary Ciliary Dyskinesia, going by the acronym PCD (bringing to mind a troupe of semi-talented, scantily clad female singers). I follow the same treatment protocol, grow the same bugs, take the same meds, and even visit the same clinics as you, but I reside somewhere in the Bermuda Triangle of disorders about which we know little about.
In short, I’m a mucus mutant. Just like you. Just like many others in the gray area of disease. And just like Snot: an actual Marvel Masters of Evil/Avengers amalgamation who kills his foe with potent mucus. (Yes, I actually researched it for this article. You’re welcome.)
So, how DO we relate?
Aside from the more obvious factoids (the taste of Tobi, G-J tubes, portacaths and pseudomonas, cannulas and Creons), here are some lesser-known commonalities between CFers, which most people don’t think about. Yes, we all do nebulizers, vests and wheeze like a Dave Matthews solo album. Some of us are even obsessed with gummy bears and salt (I even salt my tortilla chips, counterintuitive as that may be), but there is still more to our kinship than often meets the eye.
Case in point? Our voices. Hear me out: So, although every patient is different, I have found that most cystics fall into one of two categories. Either super husky and hoarse (thanks Tobramycin and coughing cocktails), or super obnoxiously infantile (like a prepubescent tween who can’t blow their nose).
You may be wondering how I know this, since I also happen to have severe hearing loss from years of (presumed) untreated infections. Well, thanks to my American Sign Language interpreter best friend (and a rather impromptu trip to meet a bunch of cystics a couple of years ago), we have done extensive recon and now consider ourselves experts on the following data. (Experts subject to disagree.)
Unfortunately, I fall into the latter category of voices more often than not (there goes my Demi Moore dreams of yore!). Although I tend to lose mine at least once a month due to infection, cough or medication adjustments. This means I vary between being mistaken audibly for my 11-year-old daughter, or being a chesty, cigar-smoking mob boss. Either way, the distinct voice of CFers should be medical science. We just, you know, need to present our thesis proposal or whatever.
Now, many of us have read about the classic terrible CF posture. Even as a dancer (which means good posture is literally my job), I still struggle with scoliosis and disc-narrowing from all the intensive coughing. On the contrary, something many physicians may not recognize is a dreaded, crippling condition that besets our very existence — the “chicken leg.”
Even the aforementioned best friend, who has about as much body fat as Chris Pratt before he films a movie (not after), commented that her calves felt obese upon meeting a group of CFers. The truth is a lot of us have weirdly skinny legs, even if it’s in contrast to a more “normal-sized” upper body. This disproportionate truth holds absolutely no significance in any possible way, except that it’s annoying when you’re a dancer, and putting on leg muscle takes the focus of Bill Nye saving the world on Netflix.
A cough like no other
Another community correlate is our distinctive cough. And even though the cacophony varies, it likely is the duration and intensity that makes it so unique. I honestly never have witnessed a single friend or family member who coughs for as long and hard as I do — unless it was someone with CF.
And, after asking the best friend (“CF Scientist”) who helped collect data years ago what she thought was the most little known linkage, she simply said, “The weird affinity for tattoos.” Touché. Thankfully, this one is the easiest to explain. If your body is constantly being dealt pain, scars and torment that you cannot control, why not choose your own scars once in awhile?
I have saved the least offending correlate for last: How young we look. In the same way that I detest when actresses complain that being beautiful makes it hard to get roles (barf, Jessica Alba, barf), I am sure kvetching about a youthful appearance at 30 is just as gross. However, my point is not just that a lot of us look younger than we are (pretty sure it’s called irony), even if it’s true, but the fact that it’s so oxymoronic.
If anything, our tired bodies and faces, which are are put through more general anesthesia, hard-core medications, antibiotics and trauma than most endure in … well, never … should look sort of like Mick Jagger after a bender. And in the same way, it makes no sense that Jagger bagged a gorgeous prima ballerina with her own career and clout (can you tell I like ballet a little?) it makes no sense that so many of us easily pass as high-schoolers.
Hopefully, knowing a little bit more about what connects us, helps you feel a little more connected to me. In the end, even if our disease is the last thing we want to be known for, sometimes the beauty of it is that it brings us closer together, whether we like it or not.
And, fortunately for us, and the case of lifelong mutant memories and friendships, it almost always is the former.
Note: Cystic Fibrosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Cystic Fibrosis News Today, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to cystic fibrosis.