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After organ failure, a coma and 27 surgeries, I wasn’t your typical bride. So why was I trying to be?

I wanted to hide my medical history on my wedding day.

September 9 at 6:00 AM

Amy Oestreicher is an actress, musician, teacher, composer, dancer, writer, artist and yogi.

Last month, 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. But in 2005, my stomach exploded two weeks before my senior prom. I was in a coma for months; both my lungs collapsed and I needed 122 units of blood. 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.

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. I’m now a mixed-media artist, started college at 25 and have found gratitude for the obstacles that I’ve somehow turned into opportunities.

When it came to my upcoming wedding though, the obstacles didn’t feel like opportunities.

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?

They Dance Through a Dream

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 more understanding 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?

 

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