Lunch was inevitable. In the few months I’ve been rock climbing, I’ve learned to recognize the predictable rhythms of angling my foot just so, willing energy into my shoulders to grasp for the final hold, and listening to the ache in my stomach telling me it’s time to call it a day. We set off for Whole Foods, my new friend and I, rubbing our sore forearms, digging chalk out from under our fingernails, and laughing about the belay test he nearly failed.
I had secretly been hoping we’d decide on Whole Foods. Amongst the wealth of options in the prepared food section, we could both get the food that made our respective digestive systems happy. No mental calculus as I decoded the menu, looking for red flags. Plus, I could pick up the oat milk that had been sitting on my shopping list for a week, the kind without too much sugar that I can never find at Safeway.
“I’m not much of an exotic eater,” I told my friend. “Eating can be kind of complicated for me.”
“Why’s that?” he replied, with a look of mild curiosity and confusion as if eating should be one of the simpler parts of life.
***
Each time I have to tell someone I only possess half of my small intestine, I feel familiar and opposing tugs. One side of me doesn’t want it to become a Big Deal because in many ways I’m not limited much by my short bowel syndrome. I stay up late with friends. I enjoy 10 mile hikes. Last spring break, I travelled across two continents and four time zones. Many people don’t see anything “wrong” with me until I tell them. But the other side of me hopes the person in front of me will ask me a question, and then another, and ultimately understand that for me this really is a Big Deal.
I am made up of many stories. My health saga is just one of them, but it has intertwined itself into many elements of who I am. Part of the reason I felt so drawn to the boy I fell for in high school was because I saw in him someone who also knew the frustration of challenges you could not escape. Even eight years after the surgery that started this whole journey, I still catch myself standing sideways in the shower like I had to when I had a PICC line giving me intravenous nutrition. I take great joy in delicious, simple food, but have lost aspects of my identity as a foodie due to the stringency of my diet. I’m maybe the least patient person you’ll ever meet. I have an urgency to take action right now—reach out to someone today, take a class this semester—because part of me still doesn’t quite trust that my whole life isn’t going to change again. I am exceptionally good at fixing toilets.
Last fall I stood in the Prado, unable to tear my eyes away from the rippling back of the central figure in Velázquez’s Vulcan’s Forge. Simultaneously, I felt my willpower draining as I attempted to keep from crying. There are moments when I am crushed by the feeling that it’s all just not okay. Someone had innocently asked me at lunch if I was grateful for my lack of a full functioning small intestine because it meant I was forced to eat an incredibly healthy diet. “No,” I wanted to reply, “I’m not grateful for wondering if I’m giving myself a kidney stone every time I eat a handful of nuts. I’m not grateful for mornings I wake up cranky and exhausted, symptoms of acidosis, because I couldn’t resist a cupcake. I’m not grateful for the dinners I’ve had to say a quick goodbye and flee from in search of a bathroom because I’d eaten something a little too rich. I’m not grateful I don’t get cheat days.” And that afternoon in the Prado, even as I was overcome by the beauty of the masterpieces around me, I was struck by how much I wanted someone to wrap their arms around me and tell me it was okay to sometimes feel like it’s not okay.
Not that it would have been easy for me to let them.
A week into my hospital stay, my parents asked my doctors if there was anyone I could talk to—perhaps another 13-year-old with short bowel syndrome? They explained that all the other patients in my situation were only a few days old, that what had happened to me was exceedingly rare, that I was “unique.” Unique became a sort of inside joke between my mom and me, brought up whenever I began to exhibit a new rare symptom brought on by my rare condition. Yet, when my mom looked into getting me into a digestive disorders support group, I was rejected. “She’s too healthy,” the leaders said—a response which reinforced how I was thriving, and at the same time one that didn’t leave me any less alone.
A friend of mine told me a few summers back about how she shut down the first time she and her boyfriend tried to have sex. She’d been assaulted and worried that her anxiety about being intimate again made her in some way unlovable. Her boyfriend assured her that wasn’t the case, she’d just have to teach him how to take care of her.
What a lovely thought, teaching someone to take care of me. I’d have no idea where to start. As I walk the grocery store aisles, I know exactly what to buy so I’m not eating too much sugar or fat or oxalate, a compound that will form a kidney stone. Navigating the bureaucracy of CVS and UnitedHealthcare and remembering to take my medications have become second nature. Shouldering the responsibilities and emotions on my own has felt like the only option, never having met someone who shares my condition. And above all, I like the feeling of control that comes from being the sole shepherd of my health.
While I used to contemplate why the world grants misfortunes for seemingly no reason, today I reckon more with my everyday needs and limitations. I know to be kind to myself after doctor’s appointments, to not be surprised by the difficult emotions that still come after each visit. Not being able to get an ice cream cone at the end of a date may never get easier. I’m learning that I need a bit of moral support to give myself my B12 shot each month. I really wish I had a sexier symptom to talk about than gas.
Over these past few months, when someone has asked how everything’s going, I’ve tried to bring up my health, just as I would my nerves about writing a thesis. I’m trying to be more open about this element of my reality because it’s something that’s going to stick with me, even as other parts of myself change. I want to be seen, just as anyone does, but until I start talking more about my health, I’m not even giving someone the chance.
Dearest Julia, Having just read your heartfelt article I want to wrap my arms around you and give you comfort and understanding. You have been given a burden to carry which is hard and inescapable; you do so well. I admire you so very much and wish I could give you more support. There is nothing wrong with what you have let out in your wonderful writing, with such honesty, which you do so well. You have to be strong, and you are amazingly so, but wishing for support and wanting to let go sometimes is only human. You are so loved, just remember that. You are wonderful and remember we are here for you. You are not on your own but you do have to be strong, disciplined and aware. Trust me, you are.xx
I came across your article through a labyrinth of search words and page clicks. You managed to put all my complicated emotions down in writing.
Like you, I never get a cheat day. Ever. In fact, eating gives me so much anxiety, it’s almost impossible to enjoy. Food without a nutrition label? No way (I have to limit my fat intake to 5g per meal) – if I “cheat” it can cause my body to go into a tailspin. No cupcake or glass of wine is worth a week in the hospital. And yet, people will exclaim “I wish I had a problem with MY pancreas so i would be forced to eat healthy” and it drives me crazy. I even had a bride-to-be look at my feeding tube and inquire where she could get one so she could lose weight.
It’s nice to know I’m not alone, at least there’s someone else out there who recognizes how it feels to be a functional eater vs a social one. Thank you!!