A friend texted me the other day while I was lying on my back under the glaring light of my dental surgeon’s chair.
How are you?
I’m still sick. [Attachment: photo of me on laughing gas.]
You have had the (poop-emoji-est) January ever!
[Interpret ‘poop-emoji-est’ as you wish: wasteful, crap-natious, grossest, unbelievably garbage, and so forth.]
It made me lopsided smile through the dental dam, needles, drills, suction, and mind-altering medications. Because she put it quite right. It has been a doozy of a winter.
If you would permit me a moment of painful honesty and at the risk of exposing myself to be less than super-powered, super-positive, super-super Sarah:
I have Celiac Disease, a severe gluten allergy. I was diagnosed in 2002. For the most part, I have it well controlled with diet, exercise, and strict precautions. That said, it’s a lifelong autoimmune disease that has weakened my body’s ability to fight off most passing viruses. I try to keep as far from infectious disease as possible. Hard to do, right? Even harder when you’re a traveling author handshaking, hugging, and sharing meals with reader friends and strangers. Needless to say, I catch things. But never has it been like the winter of 2019.
In the spans of five weeks, I contracted a malicious fever virus, followed by an upper respiratory flu that turned to bronchitis; paroxysmal coughing from infected airways put me on an inhaler all hours of the day and night, unable to sleep, to breathe, to speak, and producing extreme exhaustion, dehydration, and medication induced GI distress. In the midst of this, I could not put off having planned dental surgery: a tooth abscess and a number of cracked teeth. I stress grind… a lot. All of this. In five weeks. That was just the physical. Emotionally, I hit a major low, which was more debilitating than the illnesses.
I didn’t feel like getting out of bed some mornings. I didn’t feel like getting in bed some nights. What was the point? I was miserable either way. Never before had I experienced such an out-of-body pessimism. I couldn’t read: it hurt my eyes. I couldn’t write: it hurt my head. I couldn’t watch movies: too loud! I couldn’t go outside: I’d catch my death of cold. I couldn’t get warm inside: shivering with fever. There were moments at my writing desk when all I could do was cradle my teacup and close my eyes; block out everything else, remove myself from reality, and float in the nothingness.
In the midst of one of those dark moments, I began to think about writers with chronic illnesses. No, I became obsessed with them. It seemed the only Internet search for which I had the strength. I wanted to know their stories. Because I could not imagine if my malaise and suffering continued for months, years, even decades. What I found gave me a whole new respect for many of my favorite authors; men and women who silently bore lifelong diseases, pushed through the depression that comes alongside of extended illness, and created powerful art.
Here are a handful of the many, living and gone, who exemplify endurance and inspired me to speak up about the realities of being a chronically ill, flawed, less than super-powered, human.
April Gibson, poet, essayist, and educator. April writes eloquently about her Crohn’s Disease, an inflammatory bowel illness that affects the digestive tract. April’s colon was surgically removed due to the disease. Instead of hating her body for being weak, she honors it for how much it has overcome: “It holds together my bones and blood, and for this I am grateful, for understanding the nature of body through the form of my own, realizing just how much it fights and chooses, how much it wants to live.”
Laura Hillenbrand, lauded author of Seabiscuit: An American Legend, and Unbroken: A World War II Story of Survival, Resilience and Redemption, which were both made into blockbuster films. She bravely sat down with the New York Times  to discuss her battle with chronic fatigue syndrome. “I don’t remember what it’s like to feel well,” Laura admits. “I’m 43. I was 19 when I got sick. It’s a lifetime ago. It’s hard for me to imagine what I would have been as a writer without the history I have now. We’re all sitting in our particular circumstances and writing from that place.” It’s a powerful message of perseverance: not to excuse weakness but to make it our strength and write from that place.
James Joyce, Irish novelist who penned Ulysses, A Portrait of the Artist as a Young Man, and Finnegans Wake. He suffered from venereal diseases, eleven barbaric eye surgeries, and chronic autoimmune illness. In the end, he died of a perforated stomach ulcer. Yet, reading his work, would we guess how much he privately suffered? “Welcome, O life! I go to encounter for the millionth time the reality of experience…” He wrote. “Better pass boldly into that other world, in the full glory of some passion, than fade and wither dismally with age.” It seems to me that one reason he may have written of heroic transcendence, perseverance, and humor was to combat the physical realities of his pain.
Porochista Khakpour, the critically-acclaimed author of Sick, The Last Illusion, and Sons and Other Flammable Objects. Her memoir Sick is a poignant recounting of debilitating, undiagnosed symptoms of Lyme Disease. Porochista underwent years of being poked, prodded, pricked, and sometimes even dismissed by physicians far and wide; all while continuing to write, publish, book tour, and being a public figure. In Sick’s epilogue, Porochista writes that it is “a story of triumph, of how a woman dove into the depths of addiction and illness and got well. She got herself better. She made it. The Book I Sold might even imply you can do it too. Or anyone can.”
George Orwell, English novelist of Animal Farm, Nineteen Eighty-Four, and other writings for which Time magazine named him one of the all-time greatest British writers. He struggled to breathe every day of his adult life. A severe case of juvenile bronchitis left his bronchial tubes permanently damaged. He habitually battled pneumonia before dying of tuberculosis. Famously quoted as saying, “Writing a book is a horrible, exhausting struggle, like a long bout with some painful illness.” Knowing his medical history, he clearly understood incessant suffering.
Nafissa Thompson-Spires, author of National Book Award long-listed Heads of the Colored People. In the Paris Review , she wrote about her chronic struggle with endometriosis, an excruciating female disorder in which abnormal tissue grows outside the uterus. Nafissa continues to struggle with the disease to this day. She does not flinch from the details of her pain nor does she want us to. “The other bright side of my pain,” she explains, “is that I have all these stories to tell, and I’m telling them…” I, for one, am so glad she is.
Esmé Weijun Wang, author of The Border of Paradise, The Collected Schizophrenias, and the writers’ blog “The Unexpected Shape.” Esmé is a leading voice for writers struggling with lifelong illness. After years of infirmity, she was diagnosed with schizophrenia and late-stage Lyme Disease. Her dedication to bringing understanding and empathy to chronic disease is one of the most powerful today. “These conditions create boundaries for my life;” she explains, “they also inspire me to guide and support others who are dealing with difficult times.”
This winter has reminded me that we are flesh and bone, spirit vapors on earth for a time and then gone. That fact doesn’t make me anxious or sad; it frees me to live bolder. I needn’t maintain a façade of immortal stamina. Being of perfect condition isn’t what produces legacy. It’s the story of our refusal to be conquered by adversity, even those that come from within.
If you battle a chronic illness, please know, you are not alone. There is a community of writers here who understand and support you.
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