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“And once it comes, now that I am wise in its ways, I no longer fight it. I lie down and let it happen. At first every small apprehension is magnified, every anxiety a pounding terror. Then the pain comes, and I concentrate only on that.” –Joan Didion, “In Bed”
It’s happening, says the woman I love to someone in the other room. The someone is most likely her sister, and I hear the shuffle of clogs on the ruined carpet, the swish and swirl of her turquoise dress. I feel the shadow of her body in the doorway. I hear her breathing, tiny bursts of air through the nose and mouth. I feel and hear everything, but I am not a body. And because I am no longer a body, I do not register sound or voice. I do not register anything. Even my presence on the scratchy carpet. I do not know that I have been lying in the lap of the woman I love as she soothes my sweat-drenched hair, as she whispers that this will pass. I do not hear her because I do not have ears. I do not have eyes. I do not see the hazy outline of her humid-frizzed hair or the worry etched in her face or how she looks down at me and then out the window, out past the dilapidated houses of this rundown block in Lafayette, Colorado, past the Rockies rising in jagged edges to snowy peaks, past logical explanation. Because right now, I do not register logic. Because this pain is not logical. This pain makes me whimper, makes me produce a noise that is octaves higher and sharper than I can otherwise make. I become a supplicant to its needs. I have a mouth. Of this I am sure. I have a mouth but it acts without my guidance. Saliva seeps from corners. Lips chapped as cracked earth. The woman I love feeds me water. I sip from a straw, but all of it dribbles out from the corners of my mouth. All of it wetting my cheeks and chin, like a child sloppy with food. I am a child. I am helpless. I am without strength. I am without will. I believe I might die. That this might be the end of me, this moment. I believe that death would be a relief from it all.
Hang on, she says. It’s almost over, she says. The end is in sight, she says.
* * *
I want to tell you about a headache. I want to tell you when someone says they are having a headache we never take it seriously. We say go get some sleep. We say relax. We say it’s only a headache. I want to say there are seven different types of pain medication in my medicine cabinet right now, and I’ve used all of them. Two of them are prescribed. One can knock me out for twenty-four hours and leave my mouth sandpaper dry. I want to tell you that a headache made me overdose on pain medication once, and all I remember was lurching up my lunch at the student health clinic in Carbondale, Illinois, and a beautiful nurse patting my back because I was crying at the same time, crying and lurching, crying and lurching, because the pain didn’t go away, the one in my head, the one pulsating like a heart about to explode. I want to tell you that I know someone who had a headache and the only way he got rid of it was he shot himself. I want to tell you that I’ve thought about shooting myself.
* * *
Testimonial from clusterheadaches.com
“I keep telling myself that I am strong enough to deal with it. I’ve been doing it for a long time now. But then the next one hits, and I become a w[h]impering little baby with no strength what-so-ever.” – Marcus
* * *
Q: How did it start?
A: It started like fairy tales do: once there was a peaceful land, and then black clouds gathered and lightning lit forests on fire and the talking animals scurried away; their cries for help were drowned by the rain that pelted the land in savage punches. And suddenly, there was no sound, the world on mute, and a blanket covered the sky, thick and suffocating. This was the apocalypse. This was the world’s end. This was the kiss-your-ass-goodbye moment. A baby hedgehog shivered in the corner of a hollowed-out tree stump. A prince fell off his steed. A princess screamed until she was hoarse.
Am I being dramatic? Yes.
* * *
Cluster headaches. Suicide headaches.
A female sufferer likened the pain to giving birth to a hundred babies at once without epidural. Some sufferers have banged their heads repeatedly against brick walls, turning their foreheads to mangled meat. Some have attempted to take power tools, drills in particular, to the source of the pain. Some have begged friends and family members to end their misery.
Once, when the pain came, I grabbed for a knife, my fist tight around it, contemplating digging out my right eye. I was twenty-one.
When the pain passed, I realized I grabbed the blade instead of the handle.
A four-inch cut almost to the bone.
A pool of blood on the flower-patterned couch, like the stain from a murder.
* * *
“It’s somewhere between 11:00 P.M. and 3:00 A.M., and I wake terrified, hopeful that I’m dreaming, and knowing that I’m not . . . I am careful not to wake the children as I make my way down the stairs. If they were to witness my nightly cluster ritual, they would never see me the same way again. Their father, fearless protector, diligent provider, crawling about in tears, beating his head on the hard wood floor.” —Anonymous
* * *
By nature, the cluster headache is consistent. For me it came every other year since I was fifteen. It came at roughly the same time each day—about 2:00 p.m.—and lasted for two hours. It came and settled in my life for a period of six weeks, and afterwards it would leave, disappear, become a trembling memory.
The headache was an unwanted guest. And my unwanted guest was a serial killer with an ice pick. When the right side of my face started to tingle, I would announce, “He’s coming.” This headache became personified. This pain took a pronoun. I planned my days around him, like how I planned my travels around snow when I lived in upstate New York. In my daily planner, I blocked out the hours between one and six. I would be occupied during those times, writing in my planner: “Down time.”
* * *
The woman I love and I often joke that when a headache happens there is one sure way of getting rid of it: decapitation.
* * *
Q: When did it start?
A: It started one day. One day.
And I remember it.
I remember it.
And I repeated myself in threes, my brain as flighty as a junco, my concentration leaping in a million avenues in milliseconds. The sun filtered through the high-school window, and I thought it was too bright, and I thought someone should dial down the light, and I said in my Southside Chicago voice, “Dial down that fuckin’ light.” The sprinklers chattered on the football field, and I could hear it two floors up, and it sounded like someone stuttering the word cheetah, and I said, “That shit’s too loud. Too loud. Too fuckin’ loud.” And the bell rang and I sat in Mrs. B.’s American literature class, my sophomore year, and we were going over A Wrinkle in Time. And then my right eye blurred. And then Mrs. B.’s voice became muffled, as if she spoke through cotton. And then pain, a music of pain, sharp thumping, a heartbeat in the temples. Drumming, thrumming, strumming. And then I closed my eyes and I pulled at my hair. I could hear my roots creak. Pain. Someone was stabbing me,
In the right eye,
I had stepped through L’Engle’s tesseract, her fictional interdimensional portal that carried Meg, Charles Wallace, and Calvin away from the world. But I wasn’t among centaurs or the Black Thing. I was on a planet of red. Hazy red. Pulsing red. Pumping blood. A bleeding rose. Dripdripdrip, and thorns were piercing the inner cavities of my brain, blood blossoming, dripdripdrip, and the pain was delicious because I was crying. I was silently crying. And someone far off said, “Mrs. B., Ira’s crying.” And I could hear people turning to stare,
shifting in their chairs, and someone said, “He’s probably crying because of Jean Lind,” but I wasn’t because Jean Lind—though she broke my heart—was not stabbing,
in the eye. Jean Lind was a pain of a different sort, and right then, she didn’t matter because the world was about pain—the physical kind—the kind that erases all your woes, a pain so intense it steals your ability to speak, because when Mrs. B. asks you if you are okay, you can’t say anything. You manage to shake your head, and someone says, “His right eye is closed,” and it was because pain had stolen my eye, had plucked,
it out of the socket. And my boys, my Chicago boys, were like, “Dude, what’s up?” And Mrs. B. says, “Take him to the nurse,” but I couldn’t move,
until fingers laced under my arms and lifted me out of my seat, and I don’t remember anything after that. Only that I woke in a cot. Only that my tears had stained the pillowcase, and the only pain left was a slight throb, a slight pulse in my temples, the fading remains of a sidewalk chalk drawing.
* * *
I do not consider myself a weak person. I am over six feet tall, over three hundred pounds. I have the build of a professional football linebacker—more fat than muscle—and I have a high tolerance for pain, loving long hours under a tattooist’s needle, loving my strange little quirks like pressing bruises and scorching my body in a hot shower or playing with the fire of a candle. Once, I stabbed my hand with a pencil because of a stupid adolescent dare and it stuck.
I don’t say these things to brag. I say these things to try to explain pain. The pain I felt when experiencing a cluster headache is intolerable. I would crumble under it. I would do almost anything to get rid of it. I understand why some soldiers collapse under torture, understand weakness, understand helplessness.
This is not about headaches. This is about tolerance. This is about pain and how it has the ability to crumple us.
* * *
My family is plagued with migraines. My mother doesn’t have them—she’s thankful—but her four other sisters are cursed, especially the twins. This is what they call headaches, a curse carried over from another life. My aunts tell me I must’ve suffered a terrible death in my past life. An elephant crushing my skull, perhaps. Or a spear through the eye. Their mother had cluster headaches, my grandmother, a woman who died before I was born. On days when pain settled between her temples, she moved like a ghost, her hands over her eyes to block the harsh Thai light, her feet shuffling on teak floors. She would respond in nods and grunts, but she still managed to take care of all nine kids while Grandfather worked at the government office in town. My mother said she was a strong woman, but strong is an understatement. Strong doesn’t fully capture what it is like to endure pain and still be productive, to still exist in the world of the living. Because headaches, bad headaches, terrifying headaches, horrifying headaches, propel us out of ourselves and we dwell somewhere no living being can reach.
The twins have them once a week, and on those days, their doors are closed to the world. And on those days we walk silently, speak in whispers.
* * *
I’ve tried pure oxygen bars and deep meditation. I’ve tried weekly massages and chiropractic adjustments. I’ve tried fancy pillows and even fancier beds. I’ve tried acupuncture and eastern medicine. Nothing worked. But if you offered me a list of other things to try, I would. I would have climbed Everest, if I believed it would take the pain away. I would offer to be locked in a tiny room of spiders, one of my great fears, if I thought it would help.
* * *
Q: Why did it start?
A: Who the fuck knows?
Ten doctors, seven specialists, five MRIs, twenty-five x-rays of the spine, uncountable blood tests. No one could determine what was wrong.
“Are you sure you’re not exaggerating about this pain?” one doctor said. Earlier in the year, when I broke my ankle, he said I had ogre feet.
I nodded. “I’m not exaggerating.”
“Are you sure it’s not psychological then?”
“I’m fifteen,” I said. “Everything’s psychological.”
Two years later: “You’re normal,” another doctor said.
“This is anything but normal.”
“Your tests,” he said, “all normal.”
“If you knew how I felt, normal would not be a word you’d use.”
I didn’t blame the doctors. Though at the time, I wanted to bludgeon each one of them. I wanted to take a scalpel to the right side of their faces. “You see,” I wanted to say. “This is what I feel. But worse. Much, much worse.” I cried most days. I cried just thinking about the pain. I cried when the pain arrived. I cried when the pain left. I cried the whole day, and I was not a crier—in fact, I was and am adamantly against crying. But crying was all I could do. This pain reduced me into a shell of a person—no—I wasn’t a person. I was a gelatinous mass of pain.
* * *
I was a rarity. I suffered from something only a sliver of the human population had. When doctors said this, it was as if I had won a prize, something I should be proud of.
My winnings? Pills.
I had a collection of them, different sizes and colors. I took them like M&Ms.
Once, in the midst of pain, I chewed one and it tasted like a cloud of chemicals, acrid and chalky. Sometimes I passed out and did not remember where I was. Sometimes, most of the time, the pills failed to work and the pain persisted, like a megaphone in the ear, like an artist chipping on the inside of my eyelids, like a truck rolling over my head, and for the rest of the day I was a zombie—body without mind, movement through murky water.
* * *
The Colorado Shakespeare Festival is going on in Boulder, and my favorite play, “A Midsummer Night’s Dream,” starts at seven. My headache comes late today, after five. If we wait it out, we’ll miss the play. I don’t want to miss the play, don’t want to miss one of my favorite literary characters, Puck, cause mischief in the world.
I organize a plan a couple hours before the headache arrives. I’ve packed a cooler with cold compresses and bottles of water. I’ve cleaned out the back of the Nissan station wagon, filled the back seat with pillows and an oversized stuffed animal of a white tiger, which I’ve named Cheyenne. For reasons unclear to me, I love to burrow my head into the scruff of his mane when the headache hits. I moan into his plushness, weep into his synthetic fur, beat my fists into his cottony cush.
“I’m not missing this fuckin’ play,” I say. “Fuck the headache.”
The woman I love says, “Are you sure?” She sighs.
I know my headaches are hard to witness. But day after day, she stays with me, whispers to me, lets me hold her hand a little too tightly. I love this woman for sticking through my bouts of pain, but I know my headaches have taken a toll on her too. How tired she looks. How she has very little appetite for anything other than chocolate. How she stays up after I have passed out, because her adrenaline leaves her anxious and worried.
For this reason alone we are not missing “A Midsummer Night’s Dream” because of this fuckin’ headache, like we’ve missed planned hikes in the Rockies, like we’ve missed dinners with friends, like we’ve missed picnics in wildflower meadows.
“Everything is in place,” I say. “This is the perfect plan.”
And then he comes. There is a moment of lucidity, a moment where my muscles relax. It’s like the green time before a tornado, where the earth stills before havoc ensues. “He’s coming,” I say. This is the last lucid sentence I utter for the next two hours.
The woman I love nods.
We put our plan into motion. I get into the back of the car and lie down, dark sunglasses on. Already the light is too bright, and the first stab happens in the cortex of my right eye. I suck in a slurpy breath.
The woman I love says, “It’s okay.” She turns on the air conditioner full blast, but I don’t feel it. I am gone. The rest of the car ride is a radiant blur. I’m told I cursed a lot, alternating between fuckshitfuckshitfuckshit and other nonsensical words and sounds. I’m told that I bit into Cheyenne’s ear and screamed. I don’t remember how I got into the seat of the outdoor theater. I imagine the woman I love carrying me like an elderly hospital patient. I don’t remember much, except when the curtains parted, my headache left me, and I grabbed for the woman I love’s hand and squeezed, lightly, a pulse, to tell her I am back, to tell her I’m okay, to tell her thank you.
* * *
“I feel so helpless when it comes to comforting him. After a while it starts taking its toll on me and our children. I dre[a]d for the night to come…” – Loretta
* * *
Q: When did it end?
A: Has it?
I don’t know. I look around corners, waiting for him to return. I wish to be rid of him forever, but I understand what I wish for is unrealistic. The cluster headache, you see, always comes back.
It’s been fourteen years since my last cluster headache. I remember that last pain. Remember the magnitude of that pain. In Stephen Kuusisto’s essay “Flawless Memory,” he writes that memory theorists say that humans misremember experience and that our misapprehension becomes our experience. But like Kuusisto, when faced with such extreme pain—witnessing his mother in a malfunctioning hospital bed with an open chest cavity—theory goes out the window, and our memory of that moment shapes us, haunts us.
This pain haunts me. This headache.
That last pain—how it shook me, how it was so intense I found myself on my knees in front of the toilet in Gunnison, Colorado, a rented cabin, losing my dinner, the one I love watching from the bed, helpless. The next day, we rode a ski lift up Mount Crested Butte, the wildflowers blooming on slopes of green, and I asked her to marry me.
It seems too perfect—doesn’t it?—that this pain should leave me then, that it hasn’t come back, that it remains in remission. It seems like a horrible, unrealistic short story, one where I would tell my student that the world doesn’t work like this. I would tell him to go back and make me believe this moment. But the truth is the world does work like this. It did. That summer day in July, the woman I love twirling her engagement ring in the car, the setting sunlight projecting prisms on the roof, I shielded my eyes—not from pain—but from how brilliant the world was and how every shadow—in my brain—for the time being, simply disappeared.
But I fear.
Even now, when a headache comes, I brace myself for the worst. It’s as if a hurricane approaches, and I have to board up all the windows and extricate all the furniture from the bottom level of the house for fear of flooding. This is the dread this pain brings. I think every headache is a hurricane.
Still, I never talk about it. I keep this pain a secret. To give voice to it is to acknowledge its existence. To acknowledge its existence is to dare it to come back, is to summon it into being.
Existence. Summon. Being.
Words for the supernatural. Words for the unreal.
Once a friend asked at a bar, “What was the worst pain you’ve ever felt?”
Too drunk to stop my mouth, I said, “A headache.”
“Really?” He took an incredulous sip of his beer, shaking his head. “Yep,” I said.
“A tractor ran over my foot,” he said. “You’re lucky. Only thing you need is some aspirin.”
I was not lucky. I could’ve told him the severity of the pain. I could’ve spoken about how I wanted to end it all. Could’ve said I wished one thousand tractors would run over my foot, flatten it into the texture of the blacktop. But I didn’t want to burden him with my pain. Would he believe me anyway? Would he be able to conceptualize the enormity of what I felt? Would he believe a headache is capable of debilitating a person?
I don’t want him to know. I don’t want anyone to. I want the world to be blissfully ignorant of pain like this. There is so much pain out there already. Eating at us. Digging through us. Pain of the mind. Of the body. Of our culture. Our lives. Pain that erodes. Pain that dissembles. Pain that obliterates and erases.
No, he doesn’t need to know. No one does.
* * *
Originally published by River Teeth Journal, Fall 2014.