I am becoming a supermodel.
OK, not really. But, perhaps I can pretend?
I’m traveling to New York with my daughter to take part in a beauty campaign for a company I’m passionate about. The reason I love them is that they base their entire campaign on not retouching photos. In the world of Photoshopping imagery, they’re hoping to show women with, like, pores and stuff (ew, gross).
Although I am unbelievably honored and elated, I’m also nervous. No matter who you are, the world doesn’t take kindly to scars.
And though Charlie Puth’s eyebrow and Dermot Mulrooney’s upper lip beg (ever so sexily) to differ, the “beauty world” doesn’t consider widespread scarring.
I’m not talking about the etchings on either side of my chest or across my stomach, or the blemishes from prednisone-related breakouts meticulously disguised on my chin. No, I’m referring to the scars you can’t see.
If you glanced at me right now, you’d probably see a “normal-looking” 30-something with a few odd lumps and bumps under her shirt — but nothing off-putting by society’s screwed-up standards. But if you were to look inside of me, you’d see a cosmos to conceal.
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If I could retouch my life, it would have nothing to do with rosy cheeks when running a fever, or unicorn tattoos (bruises) smattered down forearms like pollocked afterthoughts of phlebotomies gone wrong. Instead, it would have everything to do with how fearful I am.
I’m not sure if we are what we eat, like, and do — but sometimes it feels as if my entire personality consists of these things. The farther I go through life with this body, the further these fragments fade.
If my core was sketched for a beauty campaign, it’d be a watercolor of my happiness when seeing water outside my window every day or my excitement at bedtime at the prospect of coffee the following morning. I maintain memories based on what I’ve eaten or seen.
Frustratingly, the more pain I face, the greater my fear of the small pleasures defining my day-to-day.
Now, I worry about drinking coffee on an empty stomach. Will my previous fundoplication and arsenal of proton-pump inhibitor medications offset this comforting ritual? I worry about lake water, Pseudomonas, and open stomas. I fear that for every worry, I’m losing a puzzle piece of my pleasure persona; the parts of me that have nothing to do with pain or prescriptions. The elements that do a whimsical happy dance because eel sauce and fatty sushi (avocado, cream cheese, and tamago) taste that darn good.
Each time I have a pain attack (I’ve had several lately with no warning), I connect it to the flavors, favorites, and freedoms I’ve enjoyed. “Was it the amazing meal I had yesterday? Was it how long I drove in the car with my girls? Was it how I slept, what I wore, what I said?”
Nearly everything I do provokes fear that I’m somehow responsible for what’s gone wrong inside, even when the things outside – escapes and embraces — are what makes it all worth doing in the first place.
I want to Photoshop it all away.
I wish I could Photoshop how impatient I am as a patient. At watching treasured treats become ticking time bombs. At feeling like life’s big things ruin the little ones — and now even the small moments ruin the larger experiences. I wish I could avoid the people who subscribe to the psychology of “Maybe If You Just.”
The “Maybe If You Justs” love to remind me (well-meaning as they might be) that, “Maybe if you just” cut out fatty sushi, travel, joy, or stay in a bubble your entire life and avoid all glimmers of humane glitter the globe has to offer, maybe then you wouldn’t bring unwanted pains upon yourself.
I wish I could say these paranoid, prescient perceptions were beautiful and worthy of a supermodel snapshot, but the truth is they’re not. For each untouched scar on the outside of my person, there is a deeper, darker scar on the inside to match. This is the ugly side of living with an often-unpredictable body and hoping that pain doesn’t strike at the worst possible moment.
I can’t retouch the parts I can’t control, any more than the ones I can, but I can Photoshop my perspective to find freedom in fearfulness. Perhaps if we appreciated the pleasures while we have them, forget the pains when they’re paused, and celebrate wounds as much as whimsy, we’d find beauty in the broken?
Maybe if we just stopped wondering about the “If We Justs,” we’d just let go once in a while?
Scars aren’t always beautiful or visible, but even when we can’t touch them, we can treat them one taste and tamago at a time.
I am fearful, broken, and bruised. But I’m also beautiful on the inside and inside.
And trust me — so are you.
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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