Brina Patel

@brinapatel | contributor
Brina Patel is a freelance writer from Northern California with a passion for storytelling, traveling, and all things bookish. Since 2018, she's lived with mysterious GI issues, as well as chronic pain, which have led her to slow down and reexamine her life's ambitions. Through her health challenges, she aspires to cultivate a greater sense of community, vulnerability, and awareness. You can catch her on Instagram @brinapatelwriter.
Brina Patel

The Emotional Toll of Chronic Illness-Related Dietary Restrictions

Like many, food had never solely been a form of sustenance for me. No, no… It was an integral part of my cultural identity. A source of solace at the end of a long day. An excuse to meet up with friends when I knew I should be studying for a midterm. I refer to this in the past tense because my relationship with food has changed since chronic illness entered my life. For the past three years, I’ve lived with a mysterious gastrointestinal motility disorder. And last year, I was diagnosed with an esophageal stricture. Essentially, my stomach and esophagus don’t move food through my system as they ought to, making eating a painful and anxiety-ridden act. Prior to my illness, my relationship with food wasn’t the healthiest. While I’d never been diagnosed with an eating disorder, I did have obsessive tendencies, swinging like a trapeze artist from one diet to the next. I went through cycles of bingeing and restricting. But the thing was, I always felt a sense of control. Food was at my mercy, not the other way around. Until my gut shut down. Suddenly, food was dangerous — it had the power to physically hurt me. To render me supine for hours at a time, heating pad pressed against my chest. When I eat certain foods, I never know if they’ll get stuck in my throat or lead to a frustrating bout of indigestion. The types and textures of food I can tolerate have dwindled. Most of my meals are in pureed form, and the solid foods I can eat are softer, like sweet potatoes and nut butters. As someone who comes from a Gujarati American family, in which food is its own love language, this has proved an adjustment to say the very least. The social side of my health situation has borne a heavy load of challenges. Whereas invites to dinner with friends were once an exciting prospect, they now spur me into overthinking. And though I’ve been blessed with support, nothing prepared me for the onslaught of insensitive statements. I’ve been accused of having an eating disorder. Several specialists have sifted through my medical records, then insisted antidepressants were the antidote to my ailments. A guy I dated told me I should be glad because many women would love to have a body that was unable to eat more. (Shocker — we didn’t last long.) It can be difficult to detach from the emotional pain that arises from dietary restrictions. On the one hand, you know that, from a rational standpoint, you’re doing what’s best for your body. But on the other, you watch your loved ones consume glutenous, dairy-laden delicacies as you’re eating pureed food for the umpteenth meal. There’s no denying how isolating that feels. And let’s be real. We live on a food-centric planet. TV advertisements, aromas at the grocery store, sounds of sizzling sausages — these sensory inputs are tough to escape. And the evolutionary hardwiring even more so. From the beginning of time, our species has used food to bond. Recipes are passed down from generation to generation, a sentimental form of keeping our traditions alive. Science has even shown that when we share meals with others, we feel happier and more connected. Unlike regimented healing protocol, there’s no roadmap for navigating the emotions that arise during chronic illnesses. The line between doing what’s best for your mental versus physical health can be porous. Do I eat this food I’m craving even though I know it’ll leave me doubled over afterward? Should I eat a meal even though I have zero appetite? Therapy has been a major source of understanding my attitudes around food. It’s allowed me to examine the detrimental narratives I’d been feeding myself (pun not intended). It’s shown me to lean into my body’s cues, to be patient with it. A lot of the work involves digging into my own internal landscape, like an excavator searching for fossils of faulty belief systems wired into my brain. I know I’m hardly the only one with a distorted relationship to food because of chronic illness. Those with food allergies must remain vigilant to avoid anaphylactic shock. Individuals with IBD and IBS have their own gastrointestinal and bathroom-related repercussions. Even people with other chronic illnesses reduce or restrict foods to keep symptoms at bay. The biggest thing we can do is show ourselves compassion. Accept where we are in our journeys. And understand that there are other ways to derive joy, connection, and a sense of meaning in this world that don’t center around food. For so long I felt alone, resentful, scared, and mournful. But I know the catalyst for change comes from sharing my story. Hopefully, psychological studies will look deeper into this phenomenon and there will be a greater dialogue. Wherever your relationship is with food, know that your feelings are valid and worthy of acknowledgment.

John

How Frida Kahlo Made Chronic Pain and Disability Visible Through Art

“I paint self-portraits because I am so often alone, because I am the person I know best.” — Frida Kahlo At the Frida Kahlo: Timeless exhibit that closed recently at College of DuPage’s McAninch Arts Center in Glen Ellyn, Illinois, what gripped me as much as her artwork, the 26 paintings on display, was how profoundly her life and art were shaped by disability. I knew from the biopic with Salma Hayek that she led a life of physical pain, but had no idea she was bedbound so often and so long that she created a lot of her great art there. They even placed a replica of her bed right in the exhibit! At age 6, Kahlo contracted polio that left one leg shorter than the other. At 18, she survived a bus crash that killed several passengers. Kahlo was pierced by a metal handrail that fractured her pelvis and punctured her abdomen and uterus. Her spine was broken in three places, her right leg in 11, her collarbone was broken and her shoulder dislocated. That fateful moment dealt her a lifetime of agony, isolation, and miscarriages, but also tempered her artistic vision and strengthened her resolve to realize it no matter what. At times she saw herself and others in an almost disembodied way. She created surrealist paintings that looked like medical charts of her miscarriages, vehicular accidents, and the metal rods that propped up her back and caused chronic pain. She turned that same almost clinical eye on her portrait subjects and on the way women are treated. One of the paintings shows the brutality a woman from the headlines had suffered at the hands of a murdering man, and Kahlo pulled no punches on the details, making sure viewers got to see how many women are treated. But on the other hand, her eye could capture the lace as fine as dewdrops on the sleeve of an otherwise poor and plain young girl whom she painted, signaling the beauty she saw inside of her young friend. The exhibit highlighted the disability theme throughout the exhibit, and amplified the message by mounting a side gallery of works by Tres Fridas, a collective of artists Reveca Torres, Mariam Paré, and Tara Ahern. Tres Fridas (the name is a nod to Kahlo’s painting, Dos Fridas) stage disability-related recreations of famous paintings. The nameplates of their works show the original artworks to compare with, as well as explain issues that people with disabilities are dealing with today. Kudos to the McAninch Center for taking this opportunity to underline important issues that the general public gets little exposure to, and highlighting disabled artists. Kahlo embraced her own disability as an intrinsic part of her whole self. She wore support braces around her torso, three of which were re-created for the exhibit. One was of burnished leather that resembled a hunting vest or leather armor. Another was molded plaster, decorated with exotic painted flowers and designs. Kahlo also had a leg amputated later in life and decorated her prosthetic. Another way that disability was manifest in her art was in her subjects, especially herself. As a young woman (she died at 47), her energies and mind engaged with the wider world, yet for much of her life, her body would not let her. She and her famous and influential husband, the painter and muralist Diego Rivera, reveled in the company of artists and thinkers in Mexico and worldwide. One item in the exhibit is a short film showing her and Rivera with the historic revolutionary Leon Trotsky after he came to Mexico in exile from Russia. (Soviet Premier Joseph Stalin would send an assassin to kill him shortly afterward.) All this, and still Kahlo led much of her life in her bedroom, alone. And yet, even forced to lie on her back, she created art. To create requires willpower even for someone able-bodied. That she continued to do so through pain and depression is a testament to her power as a person and artist. As I deal with similar issues, she amazes me. Of course, Frida Kahlo is not only a disability artist. She was also a painter, provocateur, fashionista, and proud Mexicana (in the Mexican Revolution of 1910, Mexico threw off the yoke of dictatorship, and the society of Kahlo’s day embraced and celebrated its native culture and history). All of these things made up Frida Kahlo as a person and as a life, and she incorporated it all into her art and expression. Even her disability and isolation were not overlooked or kept hidden: they were turned into a source of power that made her work unique, that is, uniquely Frida Kahlo. Until recently, disability and depression were forbidden subjects. Now think about the taboos back in Kahlo’s time! Things like these seem like common sense, and yet we (me) sometimes have to learn basic truths like this, and it can take a great artist and museum to help us understand. Viva Frida Kahlo!

Mike Antonacci

Declaring a 'Day of Low Expectations' in My Life With Chronic Pain

I had such high hopes for today. The week had been good overall. My pain levels were low, I felt energetic, and so I assumed Saturday would be just like the rest of the days. I had a few important tasks I wanted to do, all of which I categorized as “high brainpower tasks,” a category I use for things I know will be mentally demanding and I can’t just squeeze them in when I’m tired. Turns out there’s research backing up my category of high brainpower tasks: when mentally exerting yourself, the brain uses up oxygen and energy, and you feel tired. Ever felt exhausted after a long day of final exams? That’s why. On a normal day, I know I need to do my high brainpower tasks in the morning, which is when I’m most alert. Not everyone is most alert in the morning, but I am, so that’s how I structure my day. I expected this Saturday to be just like most Saturdays. Unfortunately, when you have a chronic illness that can vary from day to day, you can’t always count on that. That’s why I always give myself permission to declare some days a “day of low expectations.” What actually happened on Saturday: I woke up more tired than normal, which isn’t automatically a dealbreaker for high brainpower tasks, but pain levels were higher as well. Not a good combination. On top of that, the first task I decided to tackle ended up being way harder than I expected. The info I needed was hard-to-find, it took longer than I planned, and was much more emotionally draining. By the end of it, I was wiped out, and it wasn’t even 11 a.m. So, I did what most people would do: I complained about it and got mad. Reality is hard to argue with, and as much as I try, I’ve never won. Letting go of plans is hard for me to do, especially when those plans are related to productivity, but this is why I do my most important tasks first, just in case those are the only things I’m able to do that day. So, I declared it a “day of low expectations” and told myself I didn’t have to finish anything I originally planned. As a recovering perfectionist, I know I have to give myself that permission. At that point, I figured I might as well nap. If I already woke up tired, and if mental fatigue was setting in, and it sounds like I need to make an appointment with my pillow. Best decision of the day. Not only did I wake up feeling more energized, but my pain levels were also lower because I had an hour of not using any of the body parts that hurt. I found myself able to tackle the other two tasks I had put off, which wasn’t what I was expecting, but was a nice surprise. And best of all, it led me here, to write this for you. I knew I didn’t have to do either of those things, a day of low expectations means I don’t have to, but I can if I want. Perhaps you had high hopes for today, just like I did, and while your day might be different than you wanted it to be, different doesn’t have to be bad (though of course, it can be). Perhaps today is a day where you only got the first thing on your list on and not all of them. Perhaps today isn’t going as planned and you’re more exhausted than you wanted, whether physically, mentally, or emotionally. Perhaps today is one of those bad symptoms days for you and you might need to declare it a day of low expectations. If that’s you today, do it. Today isn’t all there is. Rest up, and remember that like many video game characters and superheroes, sometimes you have to recharge before you can unleash your power move.