Photo by Autumn Luciano
First of all, let me say what an honor it is to speak on behalf of all of my hardcore femmes with IBD out there. When I had my first surgery, I couldn’t stand the thought that anyone could understand what I was experiencing. I felt very isolated. I grew resentful of anyone who claimed to understand my position in life. I owe a great debt to supportive women in the IBD community, for it is through them that my resentment passed and became acceptance. For anyone struggling with these feelings, know that you are not alone.
I was diagnosed with Ulcerative Colitis in January of 2007. At 17, I had absolutely no way of comprehending what that meant at the time. Looking back, I envy my own naïveté at the time. In many ways, I think it saved me a great deal of emotional agony. It wasn’t until after my first surgery in 2011 that I began to understand that Colitis was a very destructive, very permanent diagnosis. I thought I knew what “tired” meant. I thought I knew what dying felt like, prior to my first surgery.
With four years of flare-ups under my belt, I was no longer a candidate for Remicade. My lymph nodes were swelling, and a major concern was Lymphoma. Imuran, steroids and various other medicines I can’t recall, were also no longer options. Immunodepressed and exhausted, I was 22 and living with a houseful of my closest friends. After several trips to the ER, I was greeted by a surgeon who coldly explained that I could either have surgery or die within the next few days. She left the room after explaining that I would “Never feel normal again.” And that I would have to get used to it, which would be hard for a “Pretty girl.”
Let’s be real. I was far from feeling like a pretty girl. I was on steroids for senior prom, and my boyfriend at the time (now husband) had to nair my back so I didn’t look like a chipmunk. I had bloated until my skin hurt, broke out into acne hell, and now I was expelling blood at a rate that was both horrifying and fascinating to my doctors. I was already pretty used to not being a pretty girl. I was the girl who cried watching the Olympic gymnasts because they could move.
Three surgeries, a surgeon change, failed j-pouch, two ostomies and an astronomical amount of pain drugs later, I came out on the other side. I do mean that literally. I had lost 40 pounds and weighed a mere 90 pounds soaking wet, fully clothed. You could count every bone in my body, and the surgeries had ravaged my once adorable tummy. I didn’t just have a thigh gap, it was the Grand Canyon. My hair had fallen out from lack of nutrition, and I could barely walk to the bathroom, only feet from my bed. My skin was sallow and pale, my body was limp and fragile. But I was alive.
Being pretty was the last thing on my mind, I felt like I had been thrown into battle without armor. You didn’t make it out pretty, much less alive, without armor. But I did.
Being who I am, with some authority issues, being told what I couldn’t do was a challenge. After waking up every day for a year thinking you might die, nothing seems beyond your reach. So I started to play again. I ran, I worked out three hours a day and started to kick box. I taught dance at a summer camp. I got married. I started killing it with my dream job. I had a normal life.
It wasn’t just good enough to have a normal life. (Even though that was all I begged for all through my surgeries. Just a chance to be normal.) I wanted so much more, being finally capable, three years later. Looking at my body, and knowing that it hadn’t really been mine for nearly 10 years, I wanted ownership of it again. I had eaten well, I had trained it, groomed my muscles and rewarded years of struggle with a strong and healthy body.
Pinup was an unknown universe to me at the time. I had grown up with a love of old things, partially raised by my grandparents. It was well known that I enjoyed dressing in vintage clothing, and I had begun experimenting with my hair and makeup. I was starting to feel like myself again. Blow drying wasn’t exhausting. Getting ready was fun again, not a daunting tedium.
I was invited by a high school friend of my husband’s to a Retro night/Pinup competition at a local bar in the winter of 2013. I was prim, in a vintage 40s silk dress, with modest and frazzled victory rolls. I watched the girls (who were all so perfect in every way) compete, and I knew I was so in love with their culture. Everything about what they were saying and doing spoke to my core. After the competition, the musicians began to play and I noted that nobody was dancing. Since my health had been regained, dancing had become one of my very favorite things. I walked to the table to girls and leaned in over the shoulder of the dainty pin up who had won. “You know, everybody here will dance if you do.” I said, and we launched the dance floor. There I was. The very first night I had been able to do everything the doctors told me I would never do again. Dancing merrily and embarrassing the heck out of my introverted husband.
It snowballed from there. I didn’t know then that the winner that night would become one of my best friends, Ada Vice. Or that Gabbey Music, joined at her hip, would fold me lovingly into the world of Pinup. With the help of those two, and the lovely Alfie Jean, I had begun practicing the art of vintage beauty. It wasn’t until a year later that I would realize I had not only reclaimed my life, but all of the things fate stood to take from me before I ever knew I wanted them.
My body has become such a beautiful thing to me. Not because it seems to fit the societal standard, I feel very much that I won the genetic lottery there. I feel that way because it has carried me through some of the most terrible and devastating things a human can live through. With more resilience that I had ever given it credit for previously, it stretched, and it shrank. It is beautiful because it is mine. Scarred, tired, radiant, strong, and mine. It is through pinup that I realized this, and I continue to model for me. For the girl who dreamed of a normal life, and got so much more.
Originally published on http://www.girlswithguts.org/2016/01/14/your-stories-stella-swoon-pinup-model/