When I hate My Body, I Remember What It Has Given Me
It is day twenty-seven of strict social distancing. I only know this for sure because I checked my most recent Instagram post, which says that two days ago was day twenty-five. Today is Wednesday, April 8, 2020. I only know this because I checked my watch. The days feel long and short at the same time, and I’m not sure how that can be. There are many things I’m unsure of, these days; and I trust that we all feel that way to some extent. This pandemic has shattered our collective sense of normalcy and routine, as it’s disrupted weddings, graduations, proms, birthdays, and funerals—rituals that many people cannot fathom living without. I cannot go another day without confessing what I know to be true: it’s easy to live without those things when you have no choice.
At some point over the past twenty-seven days—they all blend together—I was talking to my friend, Liv, who was impacted by cancer. I hate how people use words like “fighting” or “beating” when putting verbs alongside a beast like cancer. Because no verb in any language can describe the deeply physical, emotional, and spiritual experience of being sick in that way. Sometimes when I imagine her being pulled from what was her happy and blessedly normal life, I see her being dragged into an arena, and cancer is not the lion—she is the lion—and cancer is this dark amorphous force that engulfs her body. I imagine that she roars, and her voice is so strong that I can see the sound released from every fiber of her being, and then watch as her very essence tangles with that darkness. Other times, I imagine her as she is in a photograph: dressed as Muhammad Ali, strutting down a hospital hallway, bald and in a mask, donning boxing gloves and a cape, staring down the camera. Everyone felt the need to reassure her that even without hair, she was beautiful. This pisses me off, because they all confront that photo with the unconscious premise that hair is a vital part of the human body, and my God, do they not notice the cape?
The Muhammad Ali quote that she boldly posts alongside that photo: “I hated every minute of training, but I said, ‘Don’t quit. Suffer now and live the rest of your life as a champion.’’
I turn to my conversations with Liv in the moments when I feel most defeated. She is one of my only friends my age who knows what it’s like to be chronically sick—sick in a way that doesn’t get better. Our diseases are extraordinarily different, but our shared experiences unite us in a unique bond. Today, I feel a humiliating level of defeat. And of course, it’s all rather absurd, because today isn’t different from any other day. The catalyst for my defeat: a bike ride to the mailbox at the end of my dirt road. I can’t put the words together to confess how difficult this exercise was for me. I’m just too disappointed in myself, and too ashamed. It’s only a mile to the mailbox and a mile back, but the road is hilly, and the terrain is rough. I’m grateful no one saw me. What had begun as a leisurely ride quickly became the most difficult exercise I’ve done in memory. I pushed myself way further than I should have, and my endurance was fueled by a profound anger towards my body’s many inadequacies. It was also fueled by the simple fact that I had no choice but to keep going; I needed to get home, and putting one foot in front of the other was the only way to get there (at that point I was walking alongside the damn bike). When I finally collapsed onto the living room floor, I Facetimed my family in Kalamazoo . . . their first reaction was to laugh. I don’t blame them for this, because I really did look pathetic, and it always takes people a minute to switch from the superficial observation, “Jess is horribly out of shape” to the more somber realization, “Jess is sick”. Nevertheless, I put on an almost childlike tantrum as I raged against my body. I said to my body, “You are weak, and pathetically inadequate. I’m ashamed to look at you in the mirror. Your scars are ugly. You are undesirable. No one likes you.” We all know the guilt and remorse felt after being mean to someone who doesn’t deserve it. My poor body. It has endured so much for me, more than most bodies endure, and I’m ashamed of it. I forget that it has made me a champion.
There was a brief period at the beginning of the pandemic when the chronically ill imagined that the rest of the world would finally understand what it’s like to be us. We saw people voice dismay over missed sports games, over canceled proms, and over abandoned vacation plans. We hoped their dismay would turn into empathy, and we waited for them to realize that the sacrifices being asked of them are sacrifices that we’ve had to make for years. It quickly became evident that such empathy could not be expected. We watched from afar as young people descended upon Florida beaches, as friends took advantage of cheap airline tickets, as communities gathered at packed bars, and as people selfishly hoarded toilet paper and hand sanitizer. They will never know what it’s like to be us.
I’ve heard all sorts of justifications for the social shenanigans plastered across our Facebook timelines and Instagram feeds. Mostly, people claim they deserve such festivity, and the use their feelings of “missing out” to rationalize having a good time. There’s the infamous youth on spring break who went viral for saying, “If I get Corona, I get Corona. I’m not going to let it interfere with me partying.” What it comes down to is this: people believe they are entitled to undisrupted lives. Our culture is based on comfort, indulgences, and personal gratification. For many, the mandated social restrictions have quickly become the worst thing to ever happen to them. If social distancing is the worst thing to happen to us by the time this is all over, we will be incredibly blessed.
I could say that I wish we lived in a world where bad things didn’t happen to good people and where life was fair. But I don’t wish that. Not even a little bit. Life is often ruthless, unpredictable, and unjust. When my complex autoimmune disease caused me to go deaf five days before starting college, I involuntarily put my life on hold to get Cochlear implants; and when I recovered from that I then faced a series of dangerous infections over the years, as all immunocompromised people are prone to do. Liv learned she had Leukemia while on a school trip and had to drop everything to return to California for life-saving treatment—a treatment that went on to cause its own disease. Years later, few of our past dreams or expectations for life turned to reality. None of this is fair. Bad things happen to good people. Good things happen to bad people. And we are better for it. Having our lives spontaneously disrupted proves to us that life is hard but reminds us that we can do hard things.
When I was fifteen—before I got sick—I encountered a proverb that fundamentally challenged how I viewed the world: “Tell me what you need, and I will tell you how to live without it.” Sometimes I find myself randomly reciting those words, as a reminder to reevaluate my values and priorities. It’s amazing what we can live without. As this global health crisis unfolds, we are all forced to question what is necessary, and to make the distinction between comfort and survival. I pray that on the other side, we can all call ourselves champions.











