The worst thing about being a writer is being unable to escape old drafts of yourself.
Would you believe that the photos you see here were taken on the same day? (See also the Facetune skills, circa 2015, that have since been forgotten.)
The one on the left was, weirdly, widely publicized at the time. I was on a trip with my family when a friend texted to say a relative in England had just glanced at the Daily Mail and seen an article on … well, me.
I had no idea that these homespun snapshots would be plastered online for the world to see.
I have always been a writer. For as long as I can remember, I’d forgo TV and video games to climb a tree and fill 99-cent steno notebooks to my heart’s content. By 13, I was writing an op-ed for my local newspaper, and by 19, I was editor of my own website. In short, I’ve always been completely open about thoughts and feelings, much to the chagrin of my mother and my high school boyfriend.
But the hard part about detailing how you’ve lived (which may or may not be a plug for my novella, “The Details of How We Lived”) is that you can’t outgrow the versions of yourself that hadn’t grown up yet. (You also can’t outgrow sentences that feel like Dr. Seuss, apparently.)
You can totally understand why the Daily Mail would grab my Gram, rewrite my own captions and commentary, and create a piece sensationalizing the inspiration porn that comes from being a person who sometimes is sick and has very little filter (metaphoric, not Mayfair).
Still, the problem with rough drafts is that they leave rough, regurgitated examples of who we really are, even after our medical circumstances or treatment regimens have shifted. And, unlike my newspaper writing days when the worst that happened were letters to the editor, we now have trolls and trepidatious territory at every turn.
In looking back at previous writings and posthaste diagnoses — remember when we thought I had primary ciliary dyskinesia? Remember when we thought my pancreas was unhealthy, and then healthy, and then unhealthy again? — I sometimes cringe at fake news. And most of the news, for better or worse, came from my own pen.
Context, it turns out, really is everything, even when it comes to portraits of patients we see online.
At the time this photo was broadcast, I was in the process of recovering from a Nissen fundoplication surgery, which took a toll on my ability to eat. That resulted in unexpected weight loss and weakness. In navigating many mobile miles amid a Miami vacation, time off my feet and on supplemental oxygen were more than a little bit needed.
I now know that I not only regained my strength and muscle mass once I could eat (and continued to make Seuss proud), but I also reclaimed a hefty bit of lung function thanks to no longer aspirating acid. In fact, since fundoplication surgery, my experimental stem cell procedure, and tackling Brugada syndrome with heart medications, my oxygen needs are semi-normal and my lung infections — while still prevalent and pains-in-the-puffers — are much easier to manage.
It’s hard to chicken-or-egg what exactly helped the most, or whether it was a psychological adjustment to the scary world of tools and treatments, but finding a better balance as a ballerina and bionic being has, in fact, been possible.
Sure, I’ve had major medical interventions since then. I’ve had organs removed and others aided by instrumentation, but both photos were the same person enjoying the same escape with her family.
It’s hard to be “inspo-po” for anyone, let alone the catacombs of dusty content on a medium that truly means forever. But if we are going to be open about our medicinal journeys online, we have to be open about our mistakes as well.
Even at my sickest, it is possible to be two people at the same time: the patient threatened by pessimism, and the person propelled by purpose and passion. Although these images are from the past, and my data and day-to-day have long since developed, I am still somewhere in the middle.
Bodies are unpredictable. Medicine is constantly changing. Tools are sometimes needed. There is no way to predict exactly when a new edit will upload.
So until then, all we can do is appreciate the past, prepare for the future, and be patient with all the sides of being a patient, no matter how rough the rough drafts may feel.
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.
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