Fall 2016: One Ill Body
Donald Trump is elected president on November 8, 2016. A few days later, I start to weaken. At first, I think I’m just suffering from somaticized depression. Who isn’t? But by the following week, my temperature has climbed to 105 degrees. By the end of November, I can’t walk and am admitted to the hospital. Three days later, I am diagnosed with systemic lupus. The average lupus patient, with her chameleonic symptoms, takes six years to be properly diagnosed. Perhaps the fever—or the political crisis—has imploded time.
Meanwhile, bitter partisanship cleaves the United States in two. At the time, I am teaching in Kofu, Japan, but living abroad can sensitize you to the bumps and sways of your native land, like how some drivers feel carsick when they’re made passengers. If you don’t enjoy the illusion of control, sudden movements alarm you even more.
This collision of personal malady and a sickening nation makes me reflect that troubled times have always boded ill for ill women. I think of Anna Akhmatova, the great poet who lived long enough to see her glamorous world of prerevolutionary Russia mutate into a totalitarian prison. In photographs, Akhmatova’s bobbed hair anchors her to her times. Unfortunately so, because her times condemned her to the scouring of Stalinism, the murder of her husband, constant threats against her son, and poverty, then illness. She wrote, “I seem to myself, as in a dream, an accidental guest in this dreadful body.” As her privilege collapsed and her homeland was skinned clean of poetry, she kept going, the dreadful body she referenced not just individual but national. She could choose to be a prisoner within it or—by the pen if nothing else—to be free. Akhmatova braced herself in 1939: “So much to do today:/Kill memory, kill pain,/Turn heart into a stone,/And yet prepare to live again.”
But in December 2016, as I fight against my own immune system, I wonder if I am ready to live again. I can’t eat or stand, my ribs stab me with each breath, and the news cycle razes hope. Still, I try to counsel myself to accept life’s patches of scorched earth. Seventeenth-century haiku poet Masahide Mizuta captured this idea in few words: “Barn’s burnt down—now I can see the moon.” When there’s nothing left of what you had relied on, you’re free to be startled by the little things—like haiku themselves.
Poetry, with its surprising line breaks and epiphanies, seems to me the perfect medium to turn to when sickness had upended the life of a person and nation. I second Virginia Woolf: “Illness makes us disinclined for the long campaigns that prose exacts.” She hazarded that fever dreams allow us to encounter sound and sense over meaning, so that “the words give out their scent, and ripple like leaves, and chequer us with light and shadow.” This is true. While hospitalized, I try reading the second volume of Elena Ferrante’s Neapolitan Novels, but the fever is indeed torching my mind. The narrator Lenù, burning with jealousy on an Ischia beach, bleeds into me on my hospital bed until I can’t distinguish between us or follow the story. Besides, when joint pain from a lupus flare makes it painful to hold up anything weightier than a pencil, poems beckon more than a female Proust. I put novels aside.
Woolf’s “chequer us with light and shadow” reminds me of Gerard Manley Hopkins’ “Pied Beauty,” and I find brief relief reading about dappled, brindled things. Afterward, I skydive into his “Terrible Sonnets,” landing in a “No worst, there is none” ravine. Then I inhale Derek Walcott, Czesław Miłosz, John Donne, and other favorites. I’m comforted by Donne’s portrayal of the dignity and intelligence of the body in “Of the Progress of the Soul: The Second Anniversary,” a poem he drafted in honor of the daughter of his patron, who died at fifteen. “She, she embraced a sickness, gave it meat/The purest blood, and breath, that e’er it eat,” as if a human body nourishes an illness out of maternal kindness. Even better was Donne’s conceit that the flesh, sick or well, has its own mind: “we understood/Her by her sight, her pure and eloquent blood/Spoke in her cheeks, and so distinctly wrought/That one might say, her body thought.” Maybe my body is not just a vessel to be poisoned but a nurturer, philosopher, and crisis negotiator for any affliction that alights on it.
My whole adjustment to my diagnosis is poetic as my mind and body struggle to understand their new, idiosyncratic forms. As a genre, poetry articulates the difficulty and joy of living in the present, a mission with which some of our greatest poets have themselves contended. In an article about Elizabeth Bishop, Lloyd Schwartz muses, “Bishop was morbidly worried about an old age of illness after lingering illness, and was terrified of becoming senile. I think if she could have known that she would die of an aneurysm, suddenly and without warning, at sixty-eight, as she was putting on her shoes to go out to dinner, she’d have lived a happier life.” I sympathize. The chance aspect of mortality has been driven home for me, and what I need to learn from it was not to fritter away my life, or this day, on worries about the future.
One of my favorite poems is Bishop’s poignant, sort-of villanelle, “One Art,” a Serenity Prayer for all who have suffered great losses. The final couplet counsels, “the art of losing’s not too hard to master/though it may look like (Write it!) like disaster.” Whenever I teach this poem, my favorite moment is when students catch the play on “write”/“right” in the last line and connect with Bishop’s wild strike at redemption. So I begin writing about lupus and my history of mental illness, but I fail to right the fact that thanks to chemotherapy drugs, my hair is falling out in handfuls. I chop it to my chin so I will lose less, and thus suffer less keenly, with each wash. Akhmatova would have approved.
In dire need of spiritual isometrics, I reach for mystical writings, a love of mine since my junior year in college, when I made the happy discovery that Catholicism has a voluptuous flipside. Simone Weil’s idea that creation can only occur where God isn’t has long been like cool hands on my spirit. But now, in my illness, something written by Saint Therese of Lisieux, the “Little Flower,” speaks to me more clearly: “If I did not simply live from one moment to another, it would be impossible for me to be patient, but I only look at the present, I forget the past, and I take care not to forestall the future.” This idea becomes my lodestar as I heal. After all, “illness” is an ugly word for change and almost-slang for time, and chronic illness amounts to a continual reckoning with flux. Perhaps refuge can only be found by dwelling deeply in the present moment. Deep within its poem.
Summer came, and I step outside again. Like the speaker in Emily Dickinson’s poem, “My first well Day – since many ill –”, I marvel at how Mother Nature has “dealt a fashion to the Nut –/She tied the Hoods to Seeds”, styling them like Coco Chanel while I was busy battling antibodies. I take night walks to avoid UV rays, kryptonite for those with lupus. Lavender, grape, and honeysuckle flash on air. Permanence stinks to high heaven.
I learn the answer to Dickinson’s final question in that poem: “My loss, by sickness – Was it Loss?/Or that Ethereal Gain/One earns by measuring the Grave –/Then – measuring the Sun –”.
Or in my case, the moon. Yes, I can see it now.
Spring 2020: Billions in Recovery
We have all become choreographers. I have never been so aware of strangers’ bodies as I am now that I must avoid them. Out on daily walks in April 2020, I sense others feel the same. We see each other, feel one another’s rhythms, pulsing like dancers in the instant between wings and stage, staggering space between us. Every city block is turned into a Balanchine ballet, with fewer muses.
By the time I had fully recovered from my lupus flare, in autumn 2017, it seemed the entire world was ailing. Racism and xenophobia had metastasized from pole to pole. I moved to Canada and became a permanent resident through my husband so I would have access to the provincial healthcare plan. Even here, though, far-right views lesioned the land. Strange to emerge from the body’s dead skin and find myself stuck inside a global carapace of hate, shiny and hard. I grew stronger as millions withered. It was not what I’d expected.
And now, this.
Yet spring hasn’t heard of COVID-19. Lilacs, tulips, and daffodils stitch Victoria, British Columbia, into a rainbow quilt like they would in any other year. There has been a run on hydroxychloroquine, the medication that has kept my lupus under control for three years, as Trump and Fox News hawk it like nineteenth-century snake oil. But that is my sole excuse for anxiety; I am luckier than most. My university classes simply moved online, my husband and I are healthy, and we just bought our first home. (We had to sign medical affidavits to view it, every purchase now a trust exercise.) My plague hair has reached pre-lupus length and thickness and is still growing, its inches sand through quarantine’s hourglass.
I know that many of us are not thriving, and not all of us are moving together. The poorest are forced to the frontlines. Sex workers—blamed for disease outbreaks for centuries—are among those struggling the most. At the same time, white supremacists plot to blow up hospitals treating coronavirus patients, and Canada just suffered its worst mass shooting in history. In her essay, “Dear Friend, from My Life I Write to You in Your Life,” Yiyun Li explains that she studied immunology because she “had liked the working concept of the immune system. Its job is to detect and attack nonself; it has memories, some as long lasting as life; its memories can go awry selectively, or, worse, indiscriminately, leading the system to mistake self as foreign, as something to eliminate.” In developing lupus, my immune system had gone indiscriminately awry, mistaking my body as nonself, but so have the minds of many others, as these plots and slaughters prove. If a country can be compared to a human body, millions of citizens have been ravaged by autoimmunity. Instead of protecting their kind, they attack.
Three years ago, lupus gave me a chance to see the limits but also the potential of my individual body. I realized that we all exist within a body yet view it from the outside too, this Milky Way of flesh and promise to be returned to, restored to, again and again for as long as we are lucky to live. And finally, due to COVID-19, I no longer feel alone in this shimmering galaxy.
At our first meeting, my Canadian rheumatologist warned me, “Don’t get sick.” The flu or a cold could catalyze a life-threatening lupus flare, which meant I not only got vaccinated against everything I could, but I also had to avoid physical contact with just about everyone but my spouse. Handshakes and hugs during flu season were out of the question. Meeting friends with young children was complicated by the fact that they were constantly contracting bugs from them. I felt left out. Apart. Now, though, I am just like everyone else. Under lockdown, I shake gloved hands with the entire human race.
In terms of place, what’s important is not just where we are privileged to be on the globe—or unlucky enough to live during an eventful time. What also matters is where we stand in relation to each other. Health hinges not on whether we can locate ourselves within the blanket-fort of a long-loved poem but on the white space between our discrete stanzas.
In the essay collection Braiding Sweetgrass, botanist and Potawatomi citizen Robin Wall Kimmerer writes of her struggle over the years to figure out why asters and goldenrod look so wondrous together. Eventually she determines, “That September pairing of purple and gold is lived reciprocity; its wisdom is that the beauty of one is illuminated by the radiance of the other.”
The COVID-19 crisis has proven this doctrine: health relies on reciprocity. We all have a place in global well-being. My aster cannot thrive if your goldenrod doesn’t stretch toward the sun.