I wanted spiritual fulfillment, to find God again, but I’d give him up in a heartbeat for a hunk of steak.
When I was 18 years old, I was your typical well-fed Jewish girl, partial to Chinese food and non-alcoholic Shirley Temples. It was the night of our family Passover seder — a favorite holiday of mine. As always, there were 30 joyous and over-stuffed friends and family surrounding us; we told the Passover story with our mouths full of laughter, song, brisket and kugel; I felt snuggly embraced by the love and warmth of the people in my life and the safety of a time-honored family tradition.
And then I felt something that I had never experienced before.
It felt like a very simple, harmless stomach ache, perhaps from too much matzoh. Nowhere in my teenage view could I ever had anticipated a coma right before my senior prom, and months later, being awoken by doctors who solemnly shook their heads and shrugged as they said, “You can’t eat or drink right now. And we don’t know when or if you’ll ever be able to again.”
But that’s what happened. The night of Passover, in 2005, my stomach literally burst to the top of the operating room from so much pressure building up inside my abdomen. I had barely survived a horrific episode of sepsis, organ failure, and mesenteric artery thrombosis resulting in “ischemic necrosis of the stomach and large and small intestine.”
While I lay in a coma for months, I owed my life to intravenous nutrition: IV fluids that injected nutrition directly into my bloodstream. With an empty abdominal cavity, any fluid or food that I ingested had the potential to kill me on the spot. For the six years I was unable to eat a morsel of food or drink a drop of liquid, IV nutrition kept me alive. But psychologically, I was constantly starving.
Apparently, you don’t need a stomach to survive. Intravenous fluids were enough to give me the energy of a racehorse. My days were filled with karate, weight-lifting, tap-dancing — all to get my mind off of what I really wanted the most: to feed my hunger.
Imagine waking up from a very sedated sleep, months after what felt like an innocuous stomach ache, and learning I wasn’t going back to high school, or going to any of the colleges I had “just” been accepted to. Or, I’d never be seeing my old house again — my family moved us to a brand new town the day I was discharged from the hospital. I learned that while I was in a coma, my childhood dog had developed a tumor, and that both of my grandparents had died.
And then, once doctors felt I was “ready” to hear about my real situation, I was completely floored. I was told about changes that were out of my control and the circumstances that I had to accept. Now that I had no stomach, doctors couldn’t predict when or if I’d ever be able to eat again. Suddenly, water and ice cubes were a forbidden pleasure that I’d taken for granted all of my life. Now, the sound of water running at a nearby sink was torture to me — another reminder of things I couldn’t do.
The more alert I became, the more I remembered of my old life PC — pre-coma. Things like water. I missed water so much — drinking it, touching it, or even playing with it. The first time they let me splash water on my face, I cried. It reminded me of washing my face in my old bathroom, in my old body, and I didn’t know if it would never feel the same way again. In the hospital, the highlight of my day was finally being allowed to brush my teeth, just for that soothing gargle of ice-cold water that would kill me if I ever dared swallow it.
Those basic human needs I couldn’t fulfill reminded me of other primal needs I couldn’t fulfill, like being outside, feeling the cool air on my skin, or casually taking a sip from a water fountain.
I was starving for some kind of oral stimulation, and the glycerine swabs the nurses would give me were just not doing the trick. Even though it was torture, I’d make whatever nurse came in also tell me what they drank with breakfast that morning. Every straw I passed, pleasantly reclined in a cool shiny glass of Pepsi, made my lips tremble. Every plastic bottle of Poland Spring firmly clenched in a visitor’s hands felt like a glamorous magazine ad of a model flaunting the finest diamond necklace. I saw every slurp from a hospital Styrofoam cup in glorified slow motion, like a model tossing her hair in the wind and the extravagant symphony of strings playing in the background.
Basically, it was awful.
It’s one thing being stuck in a hospital unable to eat or drink, but imagine being home, in the real world, and not being able to ingest a thing. I had this fantasy that on the day I would finally be discharged from the ICU, I would get all dressed up, have no medical devices attached to me, skip out the door, grab a burger on my way out, and waltz back into my old life. Except my waltz partner was my IV pole, and burgers don’t go down so well without a digestive system.
My parents felt like we all needed a “new beginning,” so they surprised me with a new house. It was empty — no memories of my former life, like my life before the coma never existed. Who was I now? What was this body covered in adhesive, plugged into machines, leaking out of openings I didn’t even know I had? The only good thing about an empty house was an empty fridge. Thankfully, there was no food in the house; any trace of edible delights would have sent my hunger cues reeling.
Instead, our fridge was filled with liters of intravenous fluid. In the house, at least my hunger was “safe,” until a family friend came over and brought us a dozen bagels, and whitefish salad, and a bucket of cream cheese as a “house-warming present.” I just remember standing there at the counter mindlessly picking the poppy seeds off of a bagel, carving out its doughy insides with my fingernails, making that crust feel as hollow as I felt inside. And then when I had mutilated this poor mound of dough — this evil thing that threatened to kill me if I even attempted to eat it — I had no idea what to do with myself. I was hungry for a purpose. And food.
I’ve always loved food. I’ve also always been human, and a girl with her own insecurities. I’d read the latest magazines and learn about the new “superfoods,” how to incorporate the newest foodie trends into my diet. Now, all I wanted was a sip of water. I missed the social elements of food. I realized that food wasn’t just about solving our physical hunger — it was a catalyst to connecting with people.
Knowing that, to me, food was a lethal danger, I shut myself away from the world. I was afraid that any outside stimulation might make me feel alive, and to feel alive meant satisfying basic human needs. It was such an unnatural way to live, but I felt I had no choice.
I felt like a completely different person. I used to eat without thinking, grabbing snacks from the pantry on my way upstairs, or ordering takeout with friends after school. Now, my parents were clearing out our refrigerator. More than that, since I started not being able to eat, I no longer felt like a person, let alone the musical theatre girl I had always thought myself to be. I was in a body I couldn’t recognize. My smooth, rosy-pink skin was now tough, painful, slathered in stitches and gauze. I was frightened of my body; frankly, I didn’t want to look at it. When the nurse came to do my dressing change every morning, I shut my eyes as hard as I could; I couldn’t care to look at my stomach covered with bags, scars and wounds. Without a body I knew,or food to put into that body myself, who — or what — was I?
I wanted spiritual fulfillment, to find God again, but I’d give him up in a heartbeat for a hunk of steak. Instead, I had what my dad would call my nightly “piña colada cocktail,” which happened to be a three-liter bag of milky white IV vein-food that I would carry around in a purse for 16 hours a day, in addition to a feeding tube in a backpack. My parents were heartbroken that I couldn’t eat, so after they saw how a simple poppy seed bagel had “traumatized” me, they rid the house of all food. My mom hid trail mix in her purse, and my dad would come home from work and hide in the garage eating his eggplant parmesan. But my sense of smell at that point was superhuman, so I was definitely onto him.
I missed having contact with food. What people don’t really understand is how playing with food, seeing it, smelling it, actually gave me some kind of vicarious satisfaction. What seemed like self-torture was actually how I kept myself sane. I saw examples of this “food porn” obsession all around me: in the hospital, all the kids who couldn’t eat were always the ones who wanted to play in the toy kitchen; we’re obsessed with what we can’t have. So I was actually going crazy with no food in the house.
Not being able to eat was difficult, but not being able to drink — especially in the heat of summer — was just torture. I became obsessed with the forbidden world of water even more. I would spend hours playing with my sink. I amassed a secret collection of every possible drink container — flasks, baby bottles, pitchers — and I’d spend the night just pouring liquid from one vessel to the next, imagining how that cool, crisp, clear water would finally feel down my throat. I even tried to talk my mother into purchasing one of those water playtime tables for toddlers, but she insisted that at 20 years old, I might be a bit too old for that.
After a full year of not even an ice cube, I was finally allowed to drink clear liquids: HEAVEN! I was allowed to drink two ounces of water the first week, then four ounces and, then finally six ounces of beautiful, crisp, clear, cold water. I couldn’t wait to take my very first sip of water with the tiniest straw I could find. I took a sip… and then I remembered that water didn’t have any flavor.
Day after day, week after week, month after month, I waited patiently to be able to take my first big bite of anything. It wasn’t until years later that I was finally able to eat, thanks to a 19-hour surgery and three shifts of nurses and doctors. As I was recovering, every other person came up to me and said, “Oh yeah, I worked on you!” and “I worked on you, too!” (I felt like quite the celebrity.)
But my 19-hour surgery was only the beginning. Thanks to the handy work of 13 surgeons in eight hospitals, 27 surgeries, and a lot of free hospital socks, I was given a “makeshift” digestive system with whatever intestines I had left.
The grand total? Six of the past years unable to eat a morsel of food or drink a drop of liquid.
When surgeons miraculously reconstructed my digestive system, food was a thrilling discovery. A lot of people ask what the first thing I ate was. Believe it or not, I brought a little frozen waffle with me to the doctor’s office. A mini one. For some reason, I REALLY wanted to have a frozen waffle. So I had a bite, but quickly I realized, after I almost went into a choking fit, I had to start with baby food. Oh well. Nothing is as glamorous as it seems.
But, baby sips turned into slurps. Slurps turned into gulps. Gulps turned into chugging and now I’m happy to say that “supersize me” is a household phrase around here. I’m happy, healthy and hungry as ever now.
Like everyone else, I sometimes forget how hard life was when I had to take it day by day, wondering if I’d ever drink again. Because I lost of much of my intestines, I only absorb 20% of what I eat. So quite fortunately, I “have to” eat 8,000 calories a day. My wallet isn’t happy, but I sure am!
Life still has its ups and downs, but I always come back to remembering how very grateful I am, how blessed I feel, and how tasty food and drink can be!
And I’ll never forget what it was like to have that very first sip.