The human body: a horse gliding through a field. A monkey skipping between branches. A comet hurtling through the black moors of space. The human body can be these things, or anything, without pain.
*
Sontag famously declared that “everyone who is born holds dual citizenship, in the kingdom of the well and the kingdom of the sick.” For some, illness is a visit to that other kingdom. For others, it is banishment, exile, a one-way ticket to a strange and unwelcoming foreign land.
*
The most famous debate about Darwin’s theory of evolution took place in 1860, at the Oxford University Museum of Natural History. But the author was not there to defend his work. He was too sick.
*
It starts with a rash on her face, a florid rash that stains her cheeks and radiates outward like starlight. A doctor looks at her face through an enormous magnifying glass that turns him into a cyclops. He says it is nothing to worry about, but still orders a test of the immune system. The test is positive. She is referred to another doctor, Dr. A, a specialist, a doctor of the joints. Even though she feels well, even though she feels no pain.
*
The physician and scientist Paul Ehrlich, who invented the first effective cure for syphilis, insisted that the body could not harm itself. Horror autotoxicus, he called it, arguing that the immune system exists to make the body well. He did not believe that the body could engage in civil war.
*
Wildebeest were “discovered” in the eighteenth century by Dutch settlers in South Africa. Despite their fearsome name, they are not dangerous. They are antelopes! Why did the Dutch call them “wild beasts”? Because they did not know what they were.
*
Dr. A becomes her fellow traveler. On her first visit, he says, “You might get sick, or you might not. It is impossible to predict.”
*
Blank slate, black monolith, sheer cliff face. Sheer terror.
*
Her veins are small and difficult to find; they roll. The phlebotomist cannot get the needle in. She tries three times, and then gets someone else, someone older, more experienced. Apparently, the hospital has a rule about how many times one person can stick another with a sharp object.
*
Frida Kahlo’s art documented her pain. When she was eighteen, she was on a bus that was hit by a trolley. A metal rod pierced her pelvis and exited through her vagina; it broke her back. For the rest of her life, she had surgeries to relieve the pain. They failed.
*
After a bad flu, she has odd, lingering symptoms. Pain, itchy eyes, stiffness. Her skin is as dry as a field after harvest. She is a castaway, adrift on a raft, tongue parched, mouth open for the tiniest drop of rain.
*
Wildebeest can weigh up to six hundred pounds and grow to five feet long. Sometimes called gnu, they are a herd animal, usually living with dozens of their kind.
*
Eventually, aided by technology, she diagnoses herself. Named Sjögren’s syndrome after its Swedish discoverer, it is a disorder of the immune system, a disease characterized by dryness, fatigue, and joint pain. She jokes with a friend, bad disease for a writer—
*
A famous tennis player has it. A friend of a friend of a friend has it. A distant relation has it. She is told that it’s not that big of a deal. She is told that the symptoms can be managed, that usually this illness is an irritant, not a death sentence. She is given prescriptions. She fills the prescriptions, telling herself that things could be worse. She reminds herself all the time that things could be worse. She wonders, What if things get worse? She wonders, How much worse would things have to be?
*
Albatross. Blasphemy. Cyanide. An unbiased opinion. A moon in the shape of a sickle. Neighbors slamming doors. Quicksand. Delayed adulthood. A body in the shape of a woman. Balustrade. Safe harbor. A woman in the shape of a body. Jade beetles. The shapes you see when you close your eyes. A shape in the woman of a body.
*
Dr. A is rough-handsome and funny, with Hugh Grant hair and dandyish shoes. She is a little in love with Dr. A—so cliché, but what can you do? She looks forward to seeing Dr. A, who calls her cool Amy, almost dancing into the examining room with neat steps, How’s my favorite patient today? He examines her gently, saying always, You’re getting better.
*
Possible causes of Darwin’s ill health include, but are not limited to:
Chagas disease
Chronic fatigue syndrome
Crohn’s disease
Cyclic vomiting syndrome
Dyspepsia
Lupus erythematosus
Ménière’s disease
Panic disorder
Prolonged seasickness
Tick-borne disease
Terror of open spaces
*
Two people look at an abstract painting. One says, I see a woman eating an apple. The other says, I see a horse riding a wave. They both stare at the artwork. They tilt their necks. They back up. It doesn’t matter. Neither sees what the other one sees.
*
Says Dr. A, I will always listen to everything you say. I will always take you seriously.
He does not know it yet, but this is a lie.
*
Pain is gravity, magnified. Stones in your pockets, bricks at your feet. Pain is the anchor, the tie that unbearably binds. Circuit, circulation, circumference. Pain is a perfection: it connects what nature would divide.
*
No one else believes she is ill.
*
Hypochondriacs are magicians; they create symptoms out of nowhere like illusionists pull rabbits out of hats. Also like magicians, when the show is over, they get to leave the stage.
*
After five years with the Swedish disease, Dr. A gives her another diagnosis: fibromyalgia. Etymologically, pain in the fiber of the muscles; it’s a disease that causes relentless widespread pain in the nerves and muscles. She refuses this diagnosis, because only hysterics have this disease. Her doctor is unmoved by her refusal, pressing and pressing the tender spots on her flesh.
*
After her return from the Crimean War, Florence Nightingale became ill, suffering aches, fevers, palpitations, shortness of breath. She wrote, “I am entirely a prisoner to my room from illness and almost to my bed.” She wrote a lot—thousands of letters. Her doctors and friends implored her to rest, but she could not. She refused the inertia of illness. For decades, she could not leave her bed, but she did not leave her work. She worked compulsively, campaigning for cleanliness, sunlight, open windows. She worked for others, the ones who could not write letters, the ones who could do nothing other than rest.
*
Thus begins her secret life. It helps that she looks well. It helps that painkillers boost her energy. It helps that she is a teacher, because she can grade in bed. It helps that she is a college teacher, because she goes to campus only two days a week. In her former secret life, she drank and had sex. Now her secret life occurs while she is sleeping, twelve or fourteen hours a day. Now her secret life is pain.
*
I just noticed, says her friend, that the word invalid can also mean invalid.
But I don’t think of you either way, her friend says hastily, invalid or invalid.
*
The patient’s mother has cancer. This is a real disease. But her mother does not feel sick. Her mother gets up and gets dressed every day, goes out to get coffee, goes shopping, goes to the movies.
I feel okay, her mother says. I feel fine. How’s your pain? How’s the pain? How’s the pain today?
*
Coleridge drank laudanum to ease his rheumatism. Later, he drank laudanum to ease the pain in his mind. First, he was tethered to pain; later, he was tethered to what released him.
*
You shouldn’t take all those pills.
I never knew you were sick.
You look so good!
Have you tried gluten-free?
Are you off sugar?
Have you cut out dairy?
It’s all in your mind.
It’s probably candida.
It’s probably mold.
It’s probably allergies.
Have you tried bone broth?
You shouldn’t eat carbohydrates.
You’re such a smart girl. You’re too smart to be sick.
Have you tried acupuncture?
Have you tried the parasite cleanse?
Have you tried iodine?
Have you tried exercise?
Have you tried meditation?
Have you tried yoga?
Have you tried hot yoga?
Have you tried prayer?
It’s such a shame.
*
She tells her boss that she has a disease. He says that is fine. She tells her boss that she misses one class a month. He says that is fine. Then she tells him, the day before the semester starts, that she must drop a class. She is too sick to teach a full load. He says that is fine. But it takes two years before she finally teaches three classes again, even after she tells him she is entirely well; she tells him she is cured. She crosses her fingers behind her back when she tells him this, hoping that saying it will make it true.
*
Descartes is wrong. There is no boundary between the body and the mind.
*
The wildebeest. Its gentle sounds, its slow progress across the savanna. It is wild and it is beastly, but it is not a lion, a tiger, a bear. The herd is its primary means of protection. Wildebeest stay alive by staying together.
*
She lives with a man for two years, until he breaks it off by text message. Dr. A suggests she try to win him back, because her health has never been better. The man will not take her back, saying cruel things, hurting her. Dr. A: Ah well, better alone than wrong.
*
Proust had to ride in a hermetically sealed car to avoid dust or pollen. No one knows what Proust actually suffered from, but then they called it asthma. Sufferers were suspect. They were blamed.
*
Is she to blame? She is. Or she thinks she is. In any event, she blames herself. Blame and pain, two sides of a coin. An off rhyme or an assonance, depending on your point of view. As if point of view matters. Perspective diminishes when your central focus is the washed-out riverbed of total body pain. Perspective fails amid flood.
*
Wrote Dickinson, quite possibly from her bed,
The heart asks pleasure first
And then, excuse from pain;
*
A friend suggests acupuncture. After great reluctance, she gives in and goes. The acupuncturist is seventy years old and barely five feet tall.
“You take pill? Oxy? Vicodin?”
She nods to the woman, whose name is Mimi.
The woman shakes her head. “I cure. You no take pill after treatment. But treatment will hurt. You be strong. You strong, and I cure.”
Mimi puts in a lot of needles.
“You have mommy pain. I right, right? You mommy no love you. So now you pain. I tell you secret: my mommy? She die on toilet in Taiwan. This so embarrassing secret. I never tell anyone but you.”
Mimi leaves for twenty minutes. The patient lies on the table, afraid to move, afraid of the needles. It feels like twenty years, not twenty minutes. When Mimi comes back, she is carrying what looks like a giant tampon filled with leaves.
“This is healing wand,” Mimi advises. “You burn it little bit every day and hold over belly button. This cure you mommy pain.”
Mimi lights the healing tampon and wafts it in a circle. Pungent smoke fills the little room. It smells of burning hair.
“You smart girl,” Mimi tells her. “You come back every two days and I cure.”
After paying $150 (cash only), she is handed some paperwork and the healing tampon. She has every intention of doing the bullshit ceremony. But the next day she can’t get up, not even to pee. Electric shocks jolt her muscles.
A friend remarks, That acupuncture did something. It just didn’t do anything good.
*
The romance of pain. You fall headfirst into the dark well, you lose your name, you become nothing. A slave. Pain is an oubliette, a cave, a crevasse. Into the maw goes light. The sunrise is swallowed, followed by the horizon. Thought ceases. Desire flees. Hunger ends. Sometimes there is sleep. Then you awaken, but the pain remains.
*
A group of medical students was interviewed about how to treat a patient with chronic pain. When asked how they would cope with a pain patient, one student answered for the group, saying: “Run.”
*
In Sylvia Plath’s poem “Tulips,” the beautiful and innocuous becomes the dangerous and unlovely. The speaker, in a hospital bed, is distanced from her body and her self; she wants to be distanced from both body and self. “I have no face, I have wanted to efface myself,” she declares. Earlier, she avers, “I am nobody.” She tells us that she has given away her name to the doctors and nurses. She compares her body to a pebble and a cargo boat: she revels in thingness. Her illness has peeled away her identity, and she experiences this as relief. She feels free, loosed from human connections: “I am a nun now, I have never been so pure.”
But the tulips, a gift—elaborately real, steadfast, assertive—will not let her go. They bring her back, “a dozen red lead sinkers round my neck.” The tulips, so red (red like the speaker’s wound, and heart), with their phony sentiment, root her back in her body; they are keeping her from death. In Plath’s poem, all the obvious signifiers trespass upon themselves: illness is good, family is bad, death is preferable to life. This is no lament about being ill: it is an embrace of illness, an embrace of the escape from reality that illness offers. And those red blooms, so corpuscular, so declarative, so relentless, do not permit escape. Flowers for the ill are an offering, but this offering is a warrant and a threat, telling the speaker you cannot leave, you cannot disappear into this illness, you won’t get off that easy. Plath has put her finger on the doubleness of being ill: you are neither here nor there. You are alive and dead. You are alone among the many. You are not in the “country far away as health.”
*
And then, those little anodynes
That deaden suffering;
*
Dr. A gives her shots, all over her back. The little needles are full of cortisone and lidocaine. He tells her that the steroids will retrain the brain, that they will reset her body and make the pain go away. He puts little round Band-Aids all over her back, and she leaves them there for days. They comfort her, little wafers, beige petals. She wears them till they fall away, rings of sticky grime, dirty reminders, badges of honor, badges of shame.
*
A partial, semi-historical list: Trazodone. Ultram. Zanaflex. Flexeril. Cymbalta. Zoloft. Seroquel. Percocet. Vicodin. Klonopin. Valium. Abilify. Restasis. Evoxac. Hydroxychloroquine. Salagen. Methylprednisolone. Methotrexate. Meloxicam. Vitamins B12, C, and D.
*
She asks her aunt, Do you think I’m pathetic?
Her aunt says, No: unlucky.
*
A former lover visits, makes love to her, makes a case: It’s not a real thing, you know. The body can’t harm itself. It’s all made up by doctors. Medicine is for-profit. I never take their tests. I never take their pills. The body can’t hurt itself. That would be like suicide, and the body wants to live. It’s illogical. The body wants to live.
*
Coleridge tried to give up the laudanum. Documenting the number of grains each day, he tried to lower his dose. He tried and failed and failed and tried again. He lived out the end of his days at his physician’s home. Dosing and talking, talking and dosing, prompting Carlyle to write of Coleridge, in a letter to a friend: “[H]is mind seems totally beyond his own controul; he speaks incessantly, not thinking or imagining or remembering, but combining all these processes into one; as a rich and lazy housewife might mingle her soup and fish and beef and custard into one unspeakable mass and present it trueheartedly to her astonished guests.”
*
Tell me what it feels like, says her friend L.
It feels like having menstrual cramps in every muscle in your body.
Oh noooo, cries L.
*
A woman named Lilah gives her cranial-sacral massage. After a year, Lilah says, My name is really Natalie. The patient feels startled, almost betrayed. A lot of us use different names, says Lilah/Natalie. The patient thinks: Like strippers? She is supposed to keep her eyes closed during the massage, but once, she opens them and sees Lilah/Natalie standing over her, humming, skinny arms extended and slightly quavering. Natalie looks like a witch; worse, she looks silly. The patient does not go back. The pain remains.
*
When the word autoimmune is uttered, people’s faces close. You can see their thoughts: Oh, she’s crazy. She wants attention. She’s a malingerer. She’s one of those.
*
Sufferers of rheumatic conditions commonly face years of misdiagnosis or lack of diagnosis. Many patients visit doctor after doctor, without help or hope. Many are misdiagnosed with depression and anxiety. Many are insulted, called “chronic complainers.” They want to be told there is something wrong with their bodies, not their minds. They want to be told there is a cure. They want to be told they are not imagining it. They want to be told they are not insane.
*
Oh, yes.
*
Damaged goods. Broken china. Ripped cloth. Soaked newspaper. Stained sheets. Chipped crystal. A necklace with a broken clasp. A doll with one leg. A scratched lens. A sock with holes. A zipper that doesn’t zip. Dead battery. A bicycle without a chain.
*
She goes to therapy with a sweet gay man who tells her, regularly, how much he cares about her. He cares about her so much he charges her only $50 an hour, even though his usual rate is $200. They talk and talk and talk. But sometimes she cancels. She cancels because she is in pain. He cares so much he stops charging her the cancellation fee. She keeps cancelling, and because he cares, he keeps calling, until he stops calling and she stops scheduling, and then she doesn’t go to therapy anymore. The pain remains.
*
In a 1901 article about Darwin in American Anthropologist, W. W. Johnston commented, “Monotony benefited him; unusual excitement broke him down.”
*
Lights are too bright, sounds are too loud, smells are too strong. She leaves a popular sushi restaurant halfway through a dinner with friends to wait in the car because she cannot bear the noise. She avoids malls, concerts, lectures, parties, readings, marches, and movie theaters on weekend nights. She avoids going out. She avoids lines at the supermarket. She avoids the supermarket. Her life becomes a series of avoidances and evasions until she cannot remember the last time she willingly left the house.
*
The male wildebeest is called “the clown of the savanna” because of the behaviors he exhibits during mating season. The female wildebeest typically bears only one calf at a time, and the calf can walk soon after being born.
*
Fatigue plagues her. Dr. A recommends injections of vitamin B12. Can’t I just take a pill, she asks. He shakes his head no and writes a prescription, for insulin needles and little vials of viscous red fluid, like raspberry cordial. She cannot make herself do it, until her mother sits beside her. Do you want to get better? her mother asks. The patient swabs her skin with alcohol and stabs the little needle into the soft fruit of her thigh. In goes the red fluid, not quite the color of blood, not quite the color of life.
*
One of the “victims” of Jack Kevorkian was a woman with chronic pain. She wasn’t terminal. She didn’t have cancer. But she was already dead. Her life was already over, living with what her father called “intractable and unrelenting pain.” She died in a motel room, with a note directing authorities to call Kevorkian’s lawyer. Her father told reporters, “[T]here are things in this world worse than death.”
*
Occupational therapy with a chirpy girl named Lindsay, who says, We’re gonna maximize your functionality! Lindsay makes a chart: days, hours, minutes. When is your best time of day? Lindsay writes grading in the hours between 11 a.m. and 2 p.m. She writes sleeping between 10 p.m. and 8 a.m. You probably need more sleep than other people. Lindsay says, You need to manage your time more carefully. Lindsay tells her a lot of things. Lindsay tells her, Never give up, especially on romance. The pain remains.
*
The patient is not Florence Nightingale. She is not Darwin. She is not Frida Kahlo. She is not Plath. She is just herself, although sometimes she fears she might be a little like Coleridge. She is just one woman in a Los Angeles apartment, a woman trying to live a life with pain.
*
A dream, a ghost story, a hymn. A river. No, none of these. A knot that draws tighter when struggled against. A constriction, like a snake. A long, beautiful snake, striped brilliant green and orange, a snake that kills not with a bite, but by pressure, choking the breath from the body.
*
What word is she trying to say? It’s just one syllable, one letter, the homophone for eye. This word has become unsayable, unsyllable, choked down in her throat, dammed in her demyelinated nerves, negated by nociceptors, axed in her axons, entrapped in her T-cells.
*
Patiently
Annihilated
Into
Nothing
*
She is not married. She has no children. She does not own a home. Her credit is questionable. Her apartment is a mess. She is losing her sense of humor. She is easily irritated. She is easily embarrassed. She tries to avoid self-pity but generally fails.
*
But Darwin was undeterred. “Even ill-health, though it has annihilated several years of my life, has saved me from the distractions of society and amusement.”
In 1864, he wrote, “Ill all January, February, March.”
In 1869, he wrote, “As yet I have hardly crawled half a mile from the house, and then have been fearfully fatigued. It is enough to make one wish oneself quiet in a comfortable tomb.”
In 1882, he declared, “I am not the least afraid to die.”
*
Dr. A tells her, For a long time, I thought you were just depressed. I didn’t actually think you were sick. Now, you’re sick.
She asks him, with a laugh, But am I still depressed?
Dr. A says, You tell me.
*
Chronic pain patients are twice as likely to experience suicidal ideation as the rest of the population.
*
Pain is like a drug: it creates oblivion. The body becomes Dresden; the body becomes a village in 1970 Vietnam. Pain is fire; pain is napalm. A ceaseless burning, fire that burns even when doused, an ocean of flame, lapping and lapping, an ocean that consumes all the houses and all the people.
*
Why was Carlyle so unkind? Because people in pain are dull. Because Coleridge never shut up. He was talking about Schiller or God or alchemy or candle wax. Coleridge, polymath of the Romantics, chief failure and complainer-in-chief, the one always saying things no one wanted to hear.
*
Pain is the edge of the map. Pain is what the mapmaker could not imagine, here be dragons. It is what the mapmaker was trying to describe when he wrote, here be dragons.
*
Her doctor begins to talk about taking away the pain pills. This terrifies her. He does not really want to do this. Political pressure is operative; the news is full of words like “epidemic,” “scourge,” “national tragedy.” Her doctor, her ally, becomes her adversary. She resents him while she needs him. She worries, and frets, and tries not to take her pills. This makes her pain worse. Sometimes she feels faint. Sometimes she feels like she will vomit. She is terrified, terrified, terrified.
*
And then, to go to sleep;
And then, if it should be
The will of its Inquisitor,
The liberty to die.
*
She has thought about it quite a bit: the end. Pills, car wreck, curtain rod with belt, razors. Might as well live. The patient does not want to hurt her family or her friends, who love her, who have watched over her and listened to her, who have endured her. So, she just thinks. She hugs the idea like a plush toy, like a pet; she licks the candy off the thought. The possibility of an ending. An actual end. Because there are things in this world worse than death.
*
Dr. A says, I thought you were going to see the psychiatrist guy? I think a lot of this is psychological . . . In his defense, he mutters this, almost as though he is embarrassed. Almost.
*
Wildebeest can live up to twenty years in the wild. How long, she wonders, how long would a wildebeest live alone? How long in a cage, how long without a herd, how long without mating or clowning? How long without the savanna or the lovely coolness of the watering hole? How long without the sounds and smells, the comforting rub of haunches, the lowing in the nighttime? Without the other gnu, how long? How?
*
Even when others are right beside her, they are far away. Miniature people in a miniature world, as though she were looking through the wrong end of the telescope. Her own body is like this: distant and tiny.
*
Still, life goes on, goes by. The days, the in and out of it all. The sun surprising in its pink mantle and then settling into its blue and purple wrapper. Giftwrap for the sky, the sky in the country far, far away, the sky of exile. She has no return date, no ticket home. Exile is prison. Like Dante, longing for Florence. Like Socrates, who took hemlock rather than be banished—because exile is a fate worse than death. Horror autotoxicus. She is undisguised, undecided, unconfused, unnatural. She knows the truth. The truth is in the body, and the body is in pain.
*
I am in pain.
No.
Yes.