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How Library Books Help Me Survive Long COVID

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I lay on my side on the couch, my face centimeters away from a plate of canned green beans, every cell in my body shrinking in decay, my bones disintegrating. My arms, functional just yesterday, are useless sludge. I heave one hand up and push a few green beans into my mouth without moving my head, resting before I am able to chew. A fork sits outside my line of vision, so it does not exist. I am spectral. This is long COVID after a year and a half.

My husband comes in, carrying an armful of books from the library. He sits down and begins to read to me out loud, an act of love performed frequently since I became ill. He reads poetry about nature, a trashy thriller we both mock, magazines about space, Toni Morrison, a book of bizarre short stories. Severed from the hockey games and concerts we used to attend, unable to even walk down the street, watch a whole movie, or reliably sleep in the same bed together, we connect through this ritual formed via the library.

Becoming disabled by a condition that is trivialized, ignored, politicized, and judged is to be marooned in a parallel universe. The former body and former life slip away into quicksand; the surrounding society remains in all its selfishness and vitriol. It is not survivable without immediately claiming a reason to keep waking up.

I have claimed books.

I download library audiobooks like other people shop online. While the physical act of reading and concentrating is exhausting and induces post-exertional malaise, listening is more tolerable. I “read” a historical fiction book about Versailles, remembering walking miles around Paris, my husband spilling crumbs from his macaron pistache on the train, riding a bike past palatial fountains. I give in to the grief, unsure if I will ever again board a plane.

I read about Rosemary Kennedy, born disabled but very functional, who was lobotomized at 23 before informed consent existed, a sickening decision based on eugenics. I think about how much has changed since then, and how much has not. I read Virginia Woolf, who struggled with post-influenza chronic illness, and a romance novel with a disabled protagonist. I fight my own internalized ableism.

I read what I never made time for: Zora Neale Hurston, John Irving, James Baldwin. I read classic children’s tales that make me smile, and about a woman in Tokyo who, defying social expectations, is perfectly happy to work at a convenience store her entire life. I read about los lectores, who would read out loud to their peers in Cuban cigar factories, passing the tedious hours. I read about chess, religion, art, and magic. I look for magic in the mundane, even though it is hard to find through the fog.

I look forward to a new release, one small investment in an uncertain future, placing it on hold so the library can tell me how many weeks to keep trudging along. Words coax me to remain connected to the outside world, transporting me, living for me when I cannot. Books are an easy topic when I am able to briefly interact with friends and family, when the reality of illness is too difficult to mention – a safe topic when others are in denial about what I mean for their own vulnerability and humanity.

I read the autobiography of Nelson Mandela, admiring the immense strength it must have taken to build a purposeful life from a 27-year political prison sentence. I feel a kinship with stories of people who are trapped, catapulted into lives they did not choose, involved in natural disasters. I read about a man who feels deep longing and abandons society to trek through the Alaskan wilderness. I remember being dropped off on a roadside by a Denali National Park bus, hiking out into the Alaskan tundra, never once wondering whether or not my body would carry me back.

My husband checks out recipe books from the library, since I can no longer do the cooking I once enjoyed, watching helplessly as the life of his independent, adventurous partner shrinks to the size of the living room, stranded on his own type of island. He borrows video games to distract himself while I constantly rest: a conscious act of maintenance requiring grit, earplugs, and an eye mask, complete isolation, a torturous stillness for a body that is screaming.

I discover I am able to read short physical books, reserving from the juvenile non-fiction section, making my way through small poetry anthologies. I learn to watercolor with an instructional book from the library, though only in increments of 15 minutes. I hold space for the people without help who do not have the privilege of books, because every solitary ounce of their energy goes to keeping themselves clean or fed.

I do not find solace in stories of sick people who are immediately believed and given a clear treatment, their suffering granted an expiration date. I instead become furious and envious. The medical care of a misunderstood chronic illness is medieval, reminiscent of books about prairie settlers lying for weeks in their beds with malaria or scarlet fever, too weak to warm a kettle, waiting for a single doctor to ride by and save them, or waiting for death.

I add books by Laura Hillenbrand and Susanna Clarke to my list, award-winning authors living with myalgic encephalomyelitis. I connect with the resilience they find in enclosed corners of life, how they exist when wreckage cannot be rebuilt but must be sustained. I search the online catalog for HIV activists – Marina Alvarez, Katrina Haslip, Peter Staley, Vito Russo – whose dedication to changing the patient role in science and research changed medicine, providing an outline for long COVID advocates of today.

Yet I am often reminded that few healthy people understand the truth: for 7.7 to 23 million Americans, long COVID is not a prolonged recovery from a virus, but a chronic disease of its own pathology. Wishes to get better soon and suggestions of common sense solutions do not land as they are intended. Even if I somehow find healing, never again will I want to sit across from the people who treated the virus that maimed my body and destroyed the life I knew like a joke.

Many of us are now diagnosed with debilitating, incurable, often untreatable illnesses triggered by viruses such as myalgic encephalomyelitis, dysautonomia, postural orthostatic tachycardia syndrome, mast cell activation syndrome, small fiber neuropathy, fibromyalgia, or craniocervical instability. Decades of ignorance and neglect have led us down a path toward this mass disabling event, a path that those with long mono, long flu, long Ebola, etc. have walked before. We stand upon their shoulders, straining to reach through the bureaucracy together and toward a better future, one that will only happen if we demand it.

Hanif Abdurraqib, a local author of national acclaim recently featured by the library wrote, “But the way I think about grief is that it is the great tug-of-war, and sometimes the flag is on the side you don’t want it to be on. And sometimes, the game has exhausted all of its joy, and all that’s left is you on your knees. But, today, even though I am sad, my hands are still on the rope.”

And so I wait, for research and science and medical treatment, sequestered in my home and body and the grip of this never-ending sickness, trying to live in echoes and shards. I keep hold of the rope. And on the worst days, I know that I will never run out of books.

Getty photo by Johner Images.

Originally published: June 1, 2022
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