Left unspoken

on beauty and being sick

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The glucose drink coats my tongue. It almost makes me sick, but I’m used to it after eleven years of this test. Something like Sprite that’s gone flat in a hot car. I have to drink it all now that the first vial of blood has been drawn. Then we wait. Another hour to draw again, another few days for the results, another few years to start treatment.

A dietician enters the room. She asks me how much I eat, how many bowel movements I have a day, whether or not I feel weak or strong and what times of the day change that. We talk briefly about our favorite dinners, allowing me to glimpse into her humanity when mine has been laid bare by quantifiable facts. Everything, she writes down. She leaves, the revolving door of people whose names I don’t remember until I’m in this very exam room.

I have cystic fibrosis. I list this on every intake form I’ve ever filled out. But this blood test today is to determine if I have a form of diabetes related to the disease, a possibility that has doggedly pursued me for the last decade. The details of how this complication can manifest don’t matter. They are, as the specialists’ notes show, facts that vary only slightly one appointment to the next.

What matters is how badly I don’t want another illness to list on any form. What matters is that you probably don’t know me as a sick person, but I am.

Illness is a palimpsest. Since my diagnosis when I was an infant, my disease has been rewritten over and over. The baseline condition comes with more complications, adding new symptoms every few years that I must remain vigilant in preventing their worsening. I’ve become intimate with these possibilities often as the symptoms make themselves known.

I leave the appointment after my veins surrender six more vials of blood. A fair trade if the prize is good results. Woozy, I walk a few blocks to McDonald’s and gorge on grease and fat and diet soda. Once I’m done I don’t feel much better. The cold outside air flushes me as I head to the train for another appointment.

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Last summer, I rewatched Agnés Varda’s Cléo from 5 to 7, a film about a woman going through the mundane motions of her day while waiting for a cancer diagnosis. Waiting, Simone Weil writes, is a spiritual practice. I’ve been Cléo many times. The world hurrying around you as your private life is under threat of illness. Waiting for results requires resignation, a relinquishment of control, a love affair with the void. Waiting defines the movements of my life.

I’d written about the film in my grad school poetry thesis, but on my rewatch, I was struck by one of Cléo’s most quotable lines. “Ugliness is a kind of death,” she says. “As long as I’m beautiful, I’m alive.”

I’ve been preoccupied with the idea of beauty for a while. I want to devote my life to it. I don’t remember how or when this new ethics came to be. I could attribute it to an acceptance of my physical self as beautiful or a renewed investment in pleasure, but maybe it’s something simpler. Beauty has become the lens through which I prefer to look at the world.

Throughout last year, I read (and re-read) Elaine Scarry’s On Beauty and Being Just. Scarry argues that beauty not only deserves academic attention, but also it could be the very key for discovering truth, and through truth, a path to justice becomes viable. Her argument is full of impressive leaps, many of which I don’t perfectly follow or agree with, but I buy into its basic premise: through appreciating beauty and our subsequent desire to replicate it, we make the world better.

The argument is idealistic, strange, and I still don’t know what to make of her ultimate thesis other than to employ the term “beauty as a path to justice” in response to certain media and puzzle my friends, as I recently did after watching The Brutalist.

If injustice begets pain, then justice begets beauty. Are pain and beauty opposites? We’ve all heard “beauty is pain,” and perhaps that is true to a degree. We do ridiculous things to stay beautiful, and with good reason. We all have bent ourselves to cultural standards, and lost beautiful things at the expense of our carelessness or greed.

But my concept of beauty doesn’t involve pain. Beauty is predicated on pleasure, on a desire for more. Like Cléo’s poeticism, I believe beauty is a sign of life.

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With deep sickness occasionally comes a brush with the divine. I don’t know if you have ever been sick enough to experience hallucinations, but I have. Or at least, I’ve stumbled into a space that is not quite living, and not quite dying either. That contact—somewhere between the body and self and God—makes the return to life all that more joyous. As scary as sickness can be, it can also bring us closer to beauty once we’ve reached the other side.

Simone Weil writes, “The beauty of the world is almost the only way by which we can allow God to penetrate us.” Weil writes too, that beauty is not a means to anything—it is an end in itself.

Any time I’ve recovered from an exacerbation, I make it a point to walk around my neighborhood, soaking in signs of life. I’ll buy flowers to fill my former sick room. I’ll look up at the buildings, such gorgeous architecture if you let your eyes wander. I will be, unironically and unabashedly, happy to be alive in the endless beauty I encounter. I’m amazed at the smallest possible things that can make me happy. Scarry writes the beautiful can also be small, which makes me think of a line in an Henri Cole poem: I want a feeling of beauty to surround the plainest facts of my life.

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I won’t lie to you. There are times I worry that my sickness will steal beauty from me. I worry it will maim me in some way, or it will rob me of the beauty I’m able to experience. Bedridden, the world goes madly on without me to bear witness to it.

What I’m really afraid of is the absence of beauty, that is, to no longer be alive.

Was it beautiful when I once coughed up blood? Is it a thing of beauty when I inhale vaporized antibiotics twice a day for three months? Am I beautiful when I’ve been drained of my color, my eyes vacant, when I ape Victorian beauty standards just by existing? How can it be beautiful to be sick?

No. But if I’m sick, I’m still alive.

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— My mystery is simple: I don’t know how to be alive.

— Because you only know, or only knew, how to be alive through pain.

– And you don’t know how to be alive through pleasure?

Throughout Clarice Lispector’s An Apprenticeship; or the Book of Pleasures, the two lovers circle around the necessity of pain and pleasure to experience life. Through Lispector’s winding prose, the lover seems diametrically opposed to suffering, whereas the protagonist Lóri finds solace in punishment and discomfort.

Physical pain mimes death, Scarry writes elsewhere in a more controversial essay on pain. The protagonist of An Apprenticeship flirts with suicide early on in the novel. It’s only when she begins her apprenticeship—her pursuit of the beloved and his ethics of pleasure—that she learns how to be alive. Beauty, for the protagonist and for all of us, is generative, lifesaving, reciprocal.

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The glucose results are inconclusive. I’ll have to do more testing. My iron is lower than usual. On the brighter side, I’ve cleared a months-long bacterial infection in my lungs. My pulmonary function is higher than ever. I try to quiet the part of my brain that says “for now.”

To be in this holding pattern is a fact of my life. I will have flares, I will go months without so much as a cough. I will be extra medicated and I will be routinely medicated.

“But our desire for beauty is likely to outlast its object because, as Kant once observed, unlike all other pleasures, the pleasure we take in beauty is inexhaustible,” Scarry writes.

My desire for beauty will outlast any transitory pain. I want to live, and I want to live beautifully, and I want beauty to save me. So I let it. I wake up to birds cooing on the fire escape. On my dresser sits a half a dozen roses my boyfriend sent to me a week ago on the day of my appointments. They’ve survived the week, still full and brilliant ivory. Throughout the day, the light changes in my room, altering the flowers’ beauty. If their beauty can persist, if the light can grow brighter and put things into a new perspective each hour, then I can too.

Cléo from 5 to 7, dir. Agnès Varda (1962)