The Mara Hoffman dress was the moment I knew: I would never again use clothing to hide. I was out and proud and never going back.
It was a crisp white cotton-linen mini with balloon sleeves and a tie back that dipped way, way down. I couldn’t not have it. Once I had it, I couldn’t not show it off. “Would you take a picture?” I asked my photographer friend, Melissa, and she obliged. Then I posted it to Instagram.
I had been inching there—exposure, freedom, revelation—over a course of years, experimenting with two-piece bathing suits, clingy dresses, and leggings. But this was momentous. The pendulum had swung before, but this was more like a dam breaking. It was 2019, and I was forty-two.
I was born with Klippel-Trenaunay Syndrome, a congenital vascular disorder that means I have a massive fatty deformity on my back and torso, along with a giant port-wine stain, legs that are different sizes, tilted posture, and lots of other trickle-down effects. I have always loved clothes, but they haven’t always loved me back.
When I was a kid, I “fought” with my underpants. My mom still chuckles about it. “Every morning,” she’ll reminisce with a giggle, “fighting with your underpants.” I remember it, too. I’d get my undies on, then thrash around, trying to make them comfortable, knowing I couldn’t. Most underwear is made for people with thighs and bum cheeks that match, which means mine never fit quite right; so I fought with my underpants. Another kind of kid might have just forsaken undies, altogether. But my mother passed down her love of fashion to me, and thank god for that. She made sure I was always impeccably dressed (I was wearing Norma Kamali sets in elementary school) because clothes brought my mom joy. Though my body meant I had to search a little harder for that joy, I always had it in me to find.
In my adolescence, the fight turned emotional and metaphysical, mirroring the peaks and valleys of hormonal mood shifts. I always wanted most that which didn’t want me back, and I settled for what I could have. The act of acquiring became the thrill I sought most, and the more competitive the acquisition, the bigger the rush. As a teenager on Long Island in the 1990s, I poured myself into skintight Farlow jeans, which ran only from sizes 1–5. (I barely made it into a 5, and how they looked—skintight on the right leg, baggy on the left—was beside the point.) I held my breath to zip up my Z-Cavs, whose tapered waists happened to hit at the bulkiest part of my middle, where a mass of flesh a classmate once referred to as “a meatball” sits. I happily wore screaming-neon Hotdogger parachute sets, which would have shouted “Look at me!” if every other girl in my middle school didn’t also have one.
There were times my body felt innocuous. There were times it felt like icky goo, as if someone who accidentally touched me might recoil when they realized that their hands were now infected, dripping with deformity. I never loved my body—at best I tolerated or ignored it; at worst, I considered it an adversary to conquer—and there were times clothes conspired to help me not-love it.
As a teenager, I desperately wanted Justin boots, but they fit only on my slimmer left foot, no matter how much lotion or butter I slathered on my right, which is very, very wide. I remember watching Stacy Gartenlaub easily slip her Justins over three pairs of slouch socks because her feet were so narrow, it was the only way she could keep them on. It felt like we were from different planets. I told myself I couldn’t wear the clingy ribbed 1960s-inspired poor-boy sweaters that came back into fashion around the same time, even though, unlike the Justins, I could physically get them on my body. I wanted to—I liked them—but I had decided at some point that my back had to remain concealed at all times. It was as if I had signed a contract with the world to keep parts of myself out of sight.
Because so many mainstream brands were untenable for me and my weird body, my taste became unwittingly elevated early on. I wore flimsy slip dresses under flannels when Marc Jacobs moved grunge to the catwalk. I wore Betsey Johnson babydolls over bellbottoms with Fluevogs. I snatched Alberta Ferretti and Moschino from the Loehmann’s Back Room, and T-shirts by Kim Gordon’s X-Girl line from the pages of Sassy magazine. I dressed sort of cool, sort of by accident.
I proudly paraded my asymmetrical legs around the summertime streets of New York City in jean shorts until one day, around junior year of college, I woke up and suddenly thought, “I can’t believe I’ve been wearing shorts this whole time!” After that, my naked legs didn’t see the light of day for at least another decade. It felt like waking up from a dream and immediately descending into a worse one that was safer but bland. Skirts went over jeans; sweatshirts went around my waist. I still loved clothes, but their ability to bring beauty into my world became secondary. They instead became utilitarian: What could I wear that would also hide me? And once I was hidden, did I like the thing I had gotten onto my body? The sweatercoats of the early aughts were my most trusted frenemy.
Throughout my twenties and thirties, the fluctuations got more dramatic, teetering and tottering between exposure and hiding, like a camera aperture auto-adjusting to light. How much exposure was I willing to give my body? How vulnerable did I feel like being? The answer changed depending on many factors: If I was dating, who I was dating, whether I was dieting, whether I was depressed. I wasn’t always aware of the shifts when they were happening; I could trace out the peaks and valleys only in hindsight.
Then age happened—and there is no greater antidote to the nauseating seesaw of giving a fuck than age.
In my forties, I have a fashion equation: Does my desire to have the thing outweigh my self-consciousness? The results have gotten more predictably lopsided. If I want it—the gold-foil Molly Goddard dress with the stretchy shirred middle that shows off every bulge and ridge of my back; the Rachel Comey bubble mini that falls at the exact spot where the asymmetry of my thighs is most noticeable; the Isabel Marant blouse with very short shorts and No. 6 sandals (for a TV segment, no less)—and I can get it onto my body, then yes. My desire always wins, and the reason is simple: Life is too short not to dress however I want. When you’re young, you think you’ll always be young, and it’s impossible to think of ever running out of time for anything. That’s not the case when you’re in your forties, and I mean that in a good way.
I have never fallen in love with a person quite the way I have with fashion. I have never met a man or woman who made my knees wobble the way getting Katherine Ratliff’s sold-out Alémais Everly pool dress into my cart after a surprise restock did. No book or painting has given me the rush of the ApplePay confirmation tremble under my thumb on a Khaite leather dress or Simone Rocha x Crocs collab, and I am so grateful for that. I think it means amazing things for my sense of self—almost unbelievable things given the way I hid at certain parts of my life. And the fact that the breadth of what I buy has only expanded over the years—all the way to backless dresses—is even better.
I try to prioritize designers who keep size-inclusivity and accessibility in mind, who, say, choose elastic over a fixed waist. I don’t know that they owe me this—designers are artists after all, and their clothes should look however they want—but I can’t help feeling enraged anytime I fall in love with a zip-back dress that I cannot get on my body and would have been able to had the designer simply opted for a pull-on style. Maybe one day designers will work with more people in mind. Until then, I’ll take what I can get and put my money toward the brands that seem to have the most humanity in mind. (Designers that make garments in “one size fits all,” can fuck right off.)
At 48, I am not young. I am not thin. I am not “normal” (based on society’s extremely limited view of what normal looks like). I am not, perhaps, what certain designers have in mind when they are at the drafting board. But I don’t care. What I wear is determined by one thing only: Do I want this particular thing on my body, regardless of what others might think or say or do once it gets there? When I love an item of clothing—because my wonderful mother indoctrinated me early—the answer is always yes.
There was a time when the mere word “back” was a potential trigger. The phrase “let’s go back to that bar,” might make me flinch—because anything that could draw attention to the most deformed part of my body was to be avoided. Little Me would have never predicted that grown-up me would not only say the word but show it off.
I have no interest in treating my body like a temple—or a monastery. My body is a party hall, a room to be decorated, a gift to adorn with bows and patterns and leather and lace—not to be draped in drab gray bunting in order to make me disappear. It is a vessel to be loved, and which I love. I am lucky to see every new day—and the people I encounter are lucky to see me—so I plan to present myself like a present for as long as I can.
Carla Sosenko’s memoir, I’ll Look So Hot in a Coffin: And Other Thoughts I Used to Have About My Body, is out now from The Dial Press.