Content Warning: This essay discusses disordered eating patterns.
For just over 7 weeks, I did not eat or drink. No food, no water. Just IV fluids.
The very last thing I expected from one gynecologist check-up in November 2015 was the eventual diagnosis of two very rare life-threatening conditions: moyamoya and midaortic syndrome. No kid is truly as invincible as they feel, but after that fated routine blood pressure check at a mundane doctor’s appointment, my invincibility vanished in mere seconds. With a systolic blood pressure far above 170, it was a miracle I hadn’t had a stroke yet. I was an asymptomatic ticking time bomb that had somehow managed to never go off.
Once we realized my blood pressure was not just a fluke resulting from some sort of heightened anxiety, I checked in to Maria Fareri Children’s Hospital, the closest children’s hospital to my family. There, they discovered the mid-aortic syndrome, a very rare condition when the aorta, the heart’s largest blood vessel, becomes too narrow. Because mid-aortic syndrome is so rare, only certain hospitals were fit to treat me. I had to be flown to Boston. In Boston, a series of tests were done to prep me for surgery. That was when the moyamoya was found. Moyamoya means “puff of smoke” in Japanese, which refers to the wispy appearance of the blood vessels near the brain.
The moyamoya surgery, which occurred in mid-March, 2016, rerouted the healthy blood vessels on my scalp to my brain, decreasing my risk of stroke and increasing the efficiency of blood flow. The recovery for this particular surgery was surprisingly miraculous; the left side of my head was shaved and cut into, and within less than two weeks I was out in the world again, awkwardly wearing baseball caps that put too much pressure on the fresh stitches.
The success of the moyamoya surgery made it all the more obvious to me that I was due for another disaster. Surgery #2, I thought, was bound to go awfully, awfully wrong. Spoiler alert — I was right.
"I was due for another disaster. Surgery #2, I thought, was bound to go
awfully, awfully wrong. Spoiler alert — I was right."
In January 2017, a graft was placed near my heart to create a new path for blood flow, and my kidneys were moved to a new, frontal location in my body. These two surgeries are known as bypass graft surgery and autotransplantation surgery. The recovery process of this combined surgery is typically 3 to 5 weeks. My recovery lasted 9.
The first food I tried to eat after my second surgery was waffles without syrup. I vomited almost immediately. In previous hospital stays my parents and I had determined that the best hospital meal was the egg white, cheddar, and avocado breakfast sandwich from Au Bon Pain, a café chain that has become synonymous with sickness to me. Any visit to Boston Children’s would go amiss without that sandwich, but for my first meal post-op, the fatty avocado seemed too risky. Waffles, we thought, were a safe bet.
The avocado didn’t even end up mattering. Everything I ate came right back up, no matter how plain it was. Even ice chips were too much.
As it would turn out, the reason why I couldn’t keep any food down was because my pancreas had been punctured in surgery. Not only was my pancreas leaking fluids that were pushing down on my stomach, causing an excruciating amount of abdominal pain, it was also unable to perform its primary function of digestion.
So you don’t eat — you can’t eat — until the pancreas is fully healed.
This is where the IV fluids come in. If your body cannot perform digestion, it has to get nutrients from somewhere else. Sustenance is injected right into your bloodstream, thus cutting out the middleman that is eating. You aren’t ever hungry when you have a steady stream of energy injected into you multiple times a day. Being hungry, however, is different than having cravings. Man, did I have cravings.
I remember the day my favorite nurse, Desh, told me I was a “foodie.” She was a night nurse, and on this particular night, I was catching her up on everything in my life through pictures on my phone. Amidst group pictures of my high school friends and videos of my dog, there were many, many photos of food. Yes, I’ve been known to photograph my food. Yes, I make sure to get it from every angle before I take a bite. Yes, I meticulously look for the right Snapchat sticker to accompany the image. There is no shame in that.
I enthusiastically showed Desh these photos. I showed her all the crepes, the tacos, the sushi, the ice cream, the cheeseburgers and the ramen I had eaten (and deemed worthy of a picture) over the past year or so.
When Desh called me a “foodie,” I scoffed. I thought the word was reserved for uppity vegans that have a Wordpress blog.
Upon second thought, I realized that Desh might have been right. One of the worst parts of being in the hospital was not being able to eat. Every now and then I would peruse the menus of local restaurants, fantasizing about what it would be like to have the ability to eat anything at all. I wanted a burrito, a poké bowl, chicken fingers, macaroni and cheese. Not being able to eat started to feel like a form of torture. Being trapped in one room in one building sucked, of course, but not being able to eat was on a whole new level of painful.
"One of the worst parts of being in the hospital was not being able to eat."
When people have near death experiences, they sometimes vow to branch out in their life. They decide to travel, or do things they never would have done before. For me, this new outlook on life was channeled into food. Since regaining the ability to eat, I’ve promised myself to not turn down the opportunity to try new foods. Growing up, I was always a picky eater. Why try new foods when you have tried and true favorites? Pasta is great. Chicken fingers are great. Why branch out?
However, there’s a whole universe of food outside of what is offered at any local diner. Sticking to the food I’ve eaten my whole life would be an injustice to the human experience. With a limited time on Earth, why waste it eating food within narrow confines? So far, the best new food I’ve tried is oysters. Oysters are incredible.
It’s not just new foods I love. Past Stephanie would be reluctant to say, “Screw it. I’m ordering a small order of Medium Buffalo Wild Wings instead of the snack size. And if no one wants to share fried pickles, I’m going to order fried pickles all for myself.”
Throughout middle school, I obsessed over food. At 13, I was counting calories, longing to become even thinner than I already was. I was not overweight by any means, but that doesn’t stop a young girl from believing her body is somehow wrong. Remember when wanting a thigh gap was a thing? I wanted a thigh gap.
"At 13, I was counting calories, longing to become even thinner than I already was. ... Remember when wanting a thigh gap was a thing? I wanted a thigh gap."
Now, there is nothing more disheartening to me than hearing a friend say, “I can’t eat that.” I can’t help but feel horrified watching a friend order an egg white omelette at a diner when I know how badly they want to order a big, juicy burger. Don’t get me wrong, there is nothing wrong with choosing the healthier option. But I do believe that, if you want a burger, there is no harm in indulging every now and then.
I know that feeling compelled to eat healthy constantly, even when you wish you could treat yourself to something different, isn’t always a conscious choice. The reason I feel so horrified is that it hurts me to think that people I love so much would have such negative associations with food. So much of our life is spent eating that it is truly disheartening to think about how many people struggle with their relationship to food. It is even more disheartening to consider the circumstances in our society that make this negative relationship fester, such as the all-too-powerful emphasis placed on achieving the “perfect body.”
"The reason I feel so horrified is that it hurts me to think that people I love so much would have such negative associations with food. So much of our life is spent eating that it is truly disheartening to think about how many people struggle with their relationship to food."
— Stephanie Philo
Food is something to be loved, not scorned. Not eating for seven weeks made that more obvious to me than ever. In the words of one of my closest friends, “Stephanie’s the Antoni of the group, because have you ever met someone more passionate about avocado toast?”