This June, I officially tied the knot. As I look back on my wedding photos, I see joy in my eyes, love beaming off my husband’s face, and my gown—which was big enough to cover the two ostomy bags attached to my body.
My medical condition is hard to quantify. I don’t have a formal diagnosis or illness. I may not have a stomach, but I sure am hungry for life. It started in 2005 — a week before my senior prom. It was our second night of Passover, and my stomach started hurting. My dad said it might be gas, but he took me to the ER for an X-ray, just in case. On the way there, my cheeks actually puffed up, soon after, I collapsed, and I woke up from my coma months later. Apparently, there was a blood clot on the mesenteric artery that caused a thrombosis, and when they cut into me, my stomach actually burst to the top of the OR. Both of my lungs collapsed, I went into sepsis shock, and I needed 122 units of blood to keep me alive. I nearly died.
When I woke up from the coma, doctors told me I had no stomach and I couldn’t eat or drink anything. They didn’t know when or if I’d ever be able to again. Instead, I had ostomy bags attached to my body. What do you say to that?
I was shocked — I had been too sleepy to be hungry, but now that I knew what the real circumstances were, I was devastated. I was confused, like I had woken up in someone else’s life — where was I? Who was I? I remember I was once so desperate for answers that I googled, “How do I find myself?”
Part of me wanted to curl up in a ball and disappear, part of me wanted to throw something. I was frustrated — I had just gotten my college acceptance letters — was I the victim of some cruel joke? My biggest goal in life was acting on the Broadway stage — and now I couldn’t even walk or talk. That’s when I made the conscious decision, that as long as this was my life right now, I would not let myself feel like a victim or hospital patient. My extremely supportive family and I found the humor and fun in everything, and made our ICU stay as pleasant as we could — whether it was setting up bowling pins in the hallway, serenading the doctors on guitars, or even my parents sneaking me out of the ICU in my hospital gown to go shopping, my attitude always remained to make the best of whatever circumstances I was dealt.
I survived by creating hope, one day at a time. I started a chocolate business, starred in shows, discovered painting, taught nursery school, learned karate, got my yoga certification, wrote a musical comedy about my life, kept a sense of humor, and hoped that every day might get better. After 27 surgeries, I was miraculously reconstructed with my remaining intestines. But for six of the past 10 years, I didn’t eat or drink a drop, not even an ice cube.
Once I was able to have my first bite of food, life finally seemed enjoyable — I could eat and I thought any surgeries were a distant memory. I went to California on vacation, and suddenly my wound ruptured. I was immediately air-vacced to Yale Medical Center. Once again, I was told that I could not eat or drink so the wound could heal. When life felt shaky, I deferred to my rock — my paintbrush and my creativity. My mother went home and gathered every scrap of fabric she could find, an old set of acrylics, and a glue gun. Every day, I worked feverishly in my hospital bed, gluing, painting, and letting my imagination set me free. Every day I would create a new work of art, a new source of hope, and display it outside my hospital room. Soon, nurses and even mobile patients would stroll by my room to see what I had created.
Suddenly, I felt like I had a mission to share my story with the world. A message that with hope, strength, and little creativity, anything is possible. I delved through my literally thousands of typed journal pages that I kept over the years I decided to take some of my journal writings, combine both original and established songs, and make a one-woman musical of my life so far.
My show dared to explore a very personal topic — what could have been a tragedy — in a comedic, yet poignant musical. “Gutless & Grateful: A Musical Feast” was the culmination of years of struggling in the dark, and the spark in me that refused to die. It told my triumphant survival tale in a way that inspired many theatregoers and prompted them to rethink the ways they live their lives. It was such a powerful experience to share my story and have it affect so many people, that I truly felt firsthand the transformative power of creative expression.
To quote a line from my show:
“They say that everything happens for a reason. But that’s not always true. Sometimes, you have to make it happen. I think about my old life, and I miss it. I miss the simplicity and straightforwardness of it. I look at old pictures and I miss the innocence, the joy, the carefreeness in my eyes. I can’t be 13 again, but I can be the best 26 I can. But sometimes I wonder what life would be like if this never had happened —This is not the path that I planned for myself — but does anyone’s life ever work out exactly how they plan it? I was led astray, and hurt, and betrayed, and dehumanized, taken apart and put back together, but differently. But my passion never went away. I kept my hunger alive. Now I know that my role in life is still to be that same performer I always wanted to be when I was 13. But now with an even greater gift to give. A story to tell. “
The story I tell is not one you hear every day.
But on my wedding day, all I wanted was a story you dream of — that picture perfect day of Happily Ever After. A normal story.
Many brides fret about the details of how they’ll look on their wedding day. I had other concerns. I looked at gown after gown in bridal magazines and cried, wondering how my medical equipment would fit inside a tight, beaded bodice. Each photo I looked at seemed to promote skin and shape. How would a backless gown look with a colossal surgical scar down my back? And how could I wear six-inch stilettos after going through severe neuropathy, which I experienced after being left on my right side for six months while I laid in a bed, comatose?
As a bride, I had longed to feel beautiful and feminine or like a life-size Barbie doll complete with voluptuous, womanly curves. Now, I was wishing I had chosen December as my wedding month, just so I would have an excuse to bury myself in a huge, furry, winter-white cape.
The more magazines I browsed, the worse I felt. My self-contempt pushed me to the point where I started to believe that the man I was marrying was annoyed with me. Brandon was the most compassionate man and moreunderstanding than I was of my ostomies, the plastic bags attached to my body that collect waste. But every now and then I’d think to myself, “Don’t these bags bother him? Can he feel them when he’s holding me? Doesn’t he just wish I were…normal?”
In the real world, beauty comes in all shapes, sizes, colors and circumstances. In wedding world, beauty becomes much more narrow: young, thin, healthy. I had spent months scrolling through Pinterest pages and ripping out magazine ads with the latest backless bridal designs. I had schlepped to department stores, sample sales, boutiques and seamstresses, struggling to keep my balance as I stepped into oceans of tulle. It wasn’t my future husband I was trying to impress—he knows that my white Asics are my “dress up shoes.” It wasn’t my mother or my patient maid of honor who did everything she could to make me feel like every other bride.
It was me. I had done more in these 10 years than most people do in a lifetime, and I still wasn’t happy with myself. I was angry at my body—frustrated that I couldn’t just be like everyone else. Upset about the hours spent changing bags, preparing medical supplies. Furious that wherever I went, my bags were with me, meaning they could leak, pull or cause discomfort at any time. Mad that wherever I went, I had to bring an emergency bag with tape, glue, adhesive, scissors, gauze, sprays, powders and a hair dryer to melt the bag in place.
What I’d really been doing was trying prove to myself that despite my medical circumstances, I could feel “normal.” But, really, what is normal?
It was me who didn’t feel like, with the ostomy bags, that I was ready to be a bride. Sometimes I still don’t feel ready for everyday life. Sometimes I wonder if I can ever truly be happy as long as I have to constantly have medical circumstances on my mind.
But this was my wedding. And I was not going to let myself get in the way of my own happiness.
I still had a fantasy of a tight-fitting bodice with an enormous, fairy tale ballgown. I basically wanted to look like a giant wedding cake. The dress had to have enough give for my ostomy bags, which expanded whenever I ate. After a snide comment from a bridesmaid that I could “Always just not eat that day,” a brief pity-party and a little me-time, I told myself that the dress would look as beautiful as I felt in it.
With my medical situation in mind, the dressmaker and I were able to meet in the middle. My dress was not “skin-tight,” but it fit me in all the right places and embraced the medical bags that saved my life years ago.
Brandon thought I looked stunning in my gown, but no more stunning than I do with my North Face fleece on. (Well, maybe a little.) I was a proud, glowing bride—in the body I have. When I first had my ostomy, I didn’t know what it was, and I didn’t know anyone else who had one. I felt alien. But my ostomy is my quirk, my lifesaver. It is my uniqueness. Maybe when we pick our wedding gowns, we should focus on highlighting our uniqueness, not our toned arms or cookie-cutter hairstyles.
My scars haven’t faded, and my ostomies haven’t disappeared. Looking back on my wedding day, I cry when I see myself floating across the dance floor in that giant cake of a dress. I look beautiful, happy, in love—and married. Isn’t that the point?
Throughout these eight years, I’ve been strong, determined, and willing to do whatever it took to stay alive. Yet I still wrestle with being grateful that this happened to me, wanting answers, wanting my old life back, being ambivalent, and just being confused. But the one thing I refuse to be is unhappy with who I am. I am changed by all of this, but alive nonetheless. With creativity, passion, and that little spark, anything is possible. You can find happiness in the little moments — you don’t always have to be thinking about the big picture.
The picture of my wedding day is my picture of health, happiness, love and life. I am the bride I’ve always envisioned myself to be.
I think we all are.
Top image: Disney’s Cinderella
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