By April Blevins Pejic
On our back porch, my husband fiddles with the telescope’s knobs and buttons. I stand beside him, sweating in the June heat. “Here,” he says. “Check it out.”
I look through the eyepiece, and Saturn’s rings materialize, the color striations, the elements of another world. I step away, look up, and the planet shrinks to a point of light against a black sky. Intellectually, I know Saturn exists, that it is a body as real as my own, but it’s so far away from my own experience I cannot fathom it. I try to imagine what it’s like to be on Saturn, the azane pungency of the atmosphere, intense 1,100 mph winds, and 62 moons floating across a sky. I cannot imagine.
Later, I’m on my bed, curled over my knees. My head screams with a pain somewhere deep behind my right eye. I rock back and forth, the feeling so intense I cannot sit still. I dig my knee into my eye socket so my eyeball won’t fly out. I pull my hair, a lesser pain distracting from the larger agony consuming me. I groan, stand up and pace. Change my mind, bury my face back into my knees. I try to disassociate from the pain in my head. I focus on breathing. Inhaling and counting to five, exhaling, counting to five, repeat. You aren’t dying. It feels like it, but you aren’t dying. Inhale count to five. Exhale. You’ve done this before. You will not die.
My husband, a physician, walks inside, smooths my back, and asks, “How are you?” We are in the same room, inches apart, and his experience of this moment, this shared space, couldn’t be further from my own. I may as well be Saturn.
In 1859, an English astronomer, Richard Carrington, visually observed a solar flare. The sun’s outer atmosphere, its corona, burns at more than a million degrees, hundreds of times hotter than its surface. These extreme temperatures fuel violent explosions like the solar flare Carrington saw. In the days following his observation, powerful coronal mass ejections, large clouds of plasma and magnetic field, launched from the sun’s molten corona on a collision course with Earth. Intense geomagnetic storms ignited Northern Lights as far south as Cuba, disrupting telegraph operations worldwide and setting some telegraph offices on fire.
Cluster headaches affect as many people as multiple sclerosis, but are less widely known and even more misunderstood, even by medical professionals. According to the Mayo Clinic, cluster headaches are one of the most painful conditions known to man, deriving their name from the headaches’ cyclical pattern. During a cluster cycle, sufferers experience bouts of extremely painful, one-sided headaches for a number of weeks or months, usually around the same time of year. But the word “headache” is really a misnomer: the pain is in the head, but isn’t like any other headache. John Fletcher, president and founder of The Cluster Headache Foundation says, “It is not a headache in any descriptive sense, but a very powerful, violent, brutal, and traumatic attack that feels physically like you’re taking or just took a cruel beating on the inside of your eye and side of your head. People describe a beast in your head doing severe physical damage. It is absolutely nothing like any typical headache of any kind.” The Mayo Clinic also says cluster headaches are not life-threatening, but arguably that isn’t true. They are also called suicide headaches because the suicide rate for cluster headache sufferers is twenty times the national average.
I teach English at a university sixty miles southwest of New Orleans. I enjoy my commute over the Mississippi River, beside the sugar cane fields lining the bayous. I routinely see alligators along the roadside and bald eagles circling the swamps. One morning, a squall line rolled through, the sky turned black then green, and a tornado touched down on the highway in front of me. I pulled over, waited as the storm uprooted trees, threw roofs to the ground, and battered my car with hail, wind and rain. I sat shaking long after it passed, looking at the oak limbs and utility poles scattered across the highway, ruminating on how easily I could have been picked up and thrown among them. But that tornado wasn’t the closest I’ve come to dying on that drive.
Early one morning, I cross the Mississippi over the Hale-Boggs Bridge, midpoint of my commute, when the electric hum seizes the side of my face, the tempest before my own private storm. I am forty-five minutes from work and forty-five minutes from home. I will not reach either in time.
I stop, turn off the car. Call my department chair, tell her I won’t make it, please cancel my classes. The sunlight burns the windshield. I crawl into my SUV’s cargo area to escape it. Then wait.
The attack begins, a stabbing in my right eye’s cortex. A serial killer with an ice pick inside my head.
Stabbing my eye.
A demon owns my face. Pulling. Yanking. Stretching nerve-endings.
Cars whoosh, their passing loud. Too loud. The light too bright. Pull my hair. Hear it creak. Too loud.
If I open the door and take two steps, it will be over.
Spend the next hour gurgling, cursing the pain. Fight the urge to open the door and step into that speeding traffic.
In these moments when the cluster headaches are at their worst, I truly want to die. I beg for an end, and don’t care if that end means a total annihilation of self: I have already been annihilated, my identity obliterated, exiled from my own head, reduced to a single feeling.
These headaches eventually end as abruptly as they start—like a flipped switch. Attacks can last from thirty minutes to several hours and may happen several times a day. My record was eight separate attacks in one day. This worst cycle occurred in June 2015, and coincided with a geomagnetic storm caused by another solar coronal mass ejection. Since Earth’s magnetic field absorbed most of the polarized particles, the effects of this particular space-weather event were mild, no spontaneous fires or power outages, but we did get some killer aurora borealis. Curtains of green, blue, and purple light danced across the night sky.
June 21st, the summer solstice, when the Earth’s 23.5-degree axial tilt dips the Northern Hemisphere toward the sun creating the longest day of the year. For thousands of years, cultures around the world have created gods and rituals celebrating the awesome power of the sun, that burning ball of plasma making life on Earth possible.
For me, the summer solstice marks a new cluster cycle’s onset, an unmaking of my world. Every year as it approaches, I get a prescient tingle, a prodromal clue the longest day is upon me, and I will live in a darkness for the next six weeks. I feel like a balloon inflates the right side of my face, and as the pressure builds, a hum like static electricity attacks the trigeminal nerve at my temple and radiates down the optic, maxillary, and mandibular nerves. My face vibrates electric current, visibly swells, and feels hot to the touch. Thus marks the beginning of a fugue state, my personal dark age.
During a cluster cycle, time doesn’t function normally. My life has no consistent schedule of sleeping and waking, working and resting. There is only pain’s time, waiting for it to pass, and anticipating the next attack. There are no days, no nights, just pain and the dread of its recurrence while the rest of the world carries on without me.
The New Orleans Naval Air Station’s website updates atmospheric and weather information every two hours, five minutes before the hour. As barometric pressure changes can trigger a cluster attack, I find myself obsessively refreshing the site.
“Why only post every two hours?” I complain to my husband. “I’m sure they’re getting readings in between.” An altimeter’s one-hundredth-inch increase can spell the onset of another headache. I am trying to divine the unknowable, gain some control over this uncontrollable pain.
“Actually, every two hours seems like a lot,” he says.
Until then, I haven’t recognized how desperation has clouded my judgment. Who needs to know the exact barometric pressure throughout their day? But knowing feels better than not knowing, so I refresh, refresh. Obsession fills the anxious hours between attacks; it’s one thing I can do, one thing I can know.
As my cluster cycles always begin on the summer solstice and return for the September equinox, when the sun crosses the equator into the Southern Hemisphere and days and nights become once again equal, I have decided my symptoms are related to the sun’s proximity to me. This pattern is probably coincidental, and hardly constitutes rigorous scientific methodology, but surely the uncanny, regular onset of my cycles at the exact dates of the sun’s same position can’t be mere coincidence. If electromagnetic storms from solar flares can disrupt radio waves in our outer atmosphere and knock out electric power grids here on Earth, why can’t space-weather and solar activity make my brain’s electrical impulses go haywire? It is at least an explanation better than the shrugs from physicians.
Describing my own experience of pain feels self-indulgent and gross. I know other people have it worse. I am in pain twice a year for six weeks and otherwise get to be normal, active, me. Knowing my pain is temporary is the only thing making it bearable, and I feel obligated to acknowledge my incredible luck, having that transience to cling to when I have nothing else.
Essential facts of my life don’t change when I am in pain; I am still writer, wife, mother, teacher. All the joys and responsibilities still exist, as do the opinions I hold about life, the universe, and my place in it. But all that shrinks away until I am only this pain, like Saturn viewed by the naked eye. Pain becomes my reality’s central fact, and unlike all the other facts of my life, I can’t share it with anyone. In that moment, someone in the same room with me will have no idea of my truest fact because the pain isn’t in that room, something tangible to look at or hold.
Typically, humans express our innermost thoughts, feelings, and experiences through language. We talk, tell stories, read, listen. In the case of pain, though, words fail. Hearing about someone else’s pain never gives the listener one’s true experience of it. In her landmark work, The Body in Pain: The Making and Unmaking of the World, Elaine Scarry writes:
For the person in pain, so incontestably and unnegotiably present is it that ‘having pain’ may come to be thought of as the most vibrant example of what it is to ‘have certainty,’ while for the other person it is so elusive that ‘hearing about pain’ may exist as the primary model of what it is to ‘have doubt.’ Thus pain comes unshakably into our midst as at once that which cannot be denied and that which cannot be confirmed.
The pain of others defies our understanding because we cannot share the experience, words cannot make us feel it, and this illuminates the semiotic problem with pain. Signifiers, at least the English language’s signifiers, can never truly communicate the experience.
When I don’t understand something or can’t find the right words, I always go to literature. But even writers have shied away from the subject. Despite physical pain’s universality, it is a distinct black hole in literature, a lament Virginia Woolf echoes in her lyrical yet humorous essay, “On Being Ill.” She writes, “English which can express the thoughts of Hamlet and the tragedy of Lear has no words for the shiver or headache…The merest schoolgirl when she falls in love has Shakespeare or Keats to speak her mind for her, but let a sufferer try to describe a pain in his head to a doctor and language at once runs dry.” Perhaps this failure of language to adequately describe pain is why there are so few literary descriptions. We do have Sophocles’ Philoctetes’ lament:
How very poor a wretch must I be then,
That Greece should never hear of woes like mine!
But they who sent me hither, they concealed them,
And smile triumphant, whilst my cruel wounds
Grow deeper still.
Lonely Philoctetes, left for dead on the desert isle of Lemnos with his grievous wounds—I can relate. Like an animal who crawls away to die, I sequester myself in my dark bedroom. We are socially conditioned to conceal weakness or illness. How are you? should always be met with Fine, thanks and you? Bootstraps, toughen up, carry on. Debilitation makes us uncomfortable, a violation of the social contract.
Well-meaning friends and family offer suggestions like caffeine and Excedrin, eating coffee beans, yoga and massages, sinus drugs and neti pots, hypnosis, cures for their past headaches. Empathy necessitates personal experience to appreciate another’s. Thus, our capacity for empathy is limited to what we have experienced. I feel obligated to tell these kind people I’ll give their suggestions a try. It’s easier than explaining cluster headaches in all their mystery, but I hate to lie. Instead, I retreat, hide in my room, avoid interaction altogether. Words fail in the case of pain, even kind ones.
In The Gay Science, Nietzsche declares, “I have given a name to my pain and call it ‘dog.’” When describing my pain, I, like Nietzsche, am reduced to metaphors, signifiers relying on completely unrelated experiences.
“How was your head today?” my husband asks.
“Lots of shadows,” I say. “Only one full attack, but I’ve had shadows all day.”
These words, “attack” and “shadow,” are shorthand I have developed, but they are essentially meaningless as descriptors. A shadow is benign and ignorable, nothing like the experience I try to describe. Maybe instead I should say nuclear shadow, those dark marks on the walls and sidewalks proving someone was once there, but no longer is.
When I say “shadow,” I mean my eyeball hurts, an electric throb at my temple pulses down my cheek inside my jaw, my teeth ache, and my nose runs. I wouldn’t call a shadow excruciating, I reserve that word for the full-blown attacks, all those symptoms exploding until everything else is obliterated.
This semiotic difficulty belies the essential problem of treating pain. Not only does pain obliterate me, pain obliterates language, too. Scarry writes, “The person experiencing pain is reduced to a pre-language state, to the sounds and cries a human being makes before language is learned.” In the moment, I can’t articulate pain as I have here. I groan, whimper, cry, yell, sigh.
Physicians have created pain scales to try compensating for this communication problem. The 1970s hospice movement introduced the practice of quantifying pain to provide better care for patients who would not be recovering. But can a number ever adequately express pain? The word “zero” doesn’t come close to describing what life is like when I am not in pain, just as the word “ten” can’t contain a cluster attack. I have ten fingers and toes. Ten is the age of my son. “Ten” can never mean “My head hurts so bad that I want to die.” Terrance Knighton, a former defensive player for the Washington Redskins, described his cluster headaches in an ESPN interview: “On a scale of one to ten, the pain is a 50.”
Aside from the scale’s semiotic problem, it also only measures intensity. It does nothing to describe the sensation of pain, its duration, or the accompanying anxiety and depression.
Most mornings, I walk my shaggy golden-doodle along the Mississippi River and loop back through our New Orleans neighborhood of shotgun homes and creole cottages painted like Easter eggs. A mile from home, I feel the right side of my face swell and tingle. It’s happening.
Oh god, it’s happening.
Hazy red. Blood-pulsing. My right eye seethes crimson. Vision blurs.
I sit on the curb. I can’t breathe. Sunglasses dig into my face. Pull them off. But the light.
Oh god, the light.
Glasses back on. Head between my knees. Will I pass out? Brain boiling. I will boil over and spill out all over this sidewalk.
I have to get up, get home, cool down. I have to get up. Keep walking. I stand. Knees buckle.
Make myself walk. A music of pain. The red throbs, pumps with each step. If I stop, I will die.
It’s 1000 degrees. My head is boiling. I pass a bowl of water someone has left out for stray dogs. Dump the sun-warmed water over my head. It does nothing. Jaw aches. Teeth burn.
I hold the leash in one hand, my right eye with the other. Must keep walking.
I wake hours later on my foyer’s cool marble, a pool of spittle beneath me. A slight throb pulses at my temples, the faded remains of a sidewalk chalk outline.
I had my first cluster attack at twenty-one. Certain I had a brain tumor, I visited my family physician, described the headache as best I could, and left with a bottle of Percocet and an appointment for a CT scan. When the scan was negative, I heard the worst words a person in pain can possibly hear, “Everything is normal.”
The doctor said I had migraines and Percocet would help. The next time I got a headache, I took one pill, but it didn’t touch the pain: I felt high, and I can assure you being high while still in pain is not in any way comforting. I threw the rest of the bottle away, and spent thousands of dollars over the next fifteen years on chiropractors, acupuncturists, hypnotists, massages, vitamins, herbs, eye glasses, and even special pillows. I would have eaten glass if you told me it would ease the pain. After each failed attempt at a fix, I was left wondering, is this all in my head?
In March 1989, astronomers observed a huge solar explosion that sent a billion-ton gas cloud and magnetic particles shooting toward Earth at a million miles per hour. The flare’s impact with the Earth’s magnetosphere jammed the frequency of Radio Free Europe’s broadcast to Russia, and conducted electrical current below most of the surface of North America. Those electrical currents found a weak spot in Quebec’s electric power grid, and the entire province’s power grid shut down for the next twelve hours. . Satellites orbiting Earth tumbled out of control for hours. Across the United States, over 200 grids experienced problems, and Floridians glimpsed the Northern Lights.
In 2011, I met the man I would later marry, a family practice physician at Tulane University. One night we were at dinner with his family, celebrating his birthday. We had just finished the main course when the electric buzz shot down the side of my face. I tried to ignore it. We ordered coffee and dessert as the pain crescendoed, my eyelid drooping and right sinus draining.
I tried playing it cool, not wanting to ruin the meal, but he noticed something wasn’t right.
“Are you okay?” he said.
“I get these weird headaches sometimes,” I said. I was getting hot, the lights and hum of the busy restaurant like daggers in my head. “I just need to go sit in the car a few minutes.” I got up and walked outside. The cool air and relative quiet of the street was better, but I wanted to collapse on the sidewalk.
He followed me and asked questions. Where does it hurt? How frequently do you get these? Have you ever seen a doctor about them?
I answered as best I could, but coherent thought is difficult during an attack.
“Come on,” he said. “Let’s go to my office.”
Once at the clinic, he said, “Sit here, I’ll be right back.”
He returned with a large oxygen canister, put the mask over my nose and mouth and set the dial to ten. I breathed deeply, inhaling as much as I could of the oxygen. Within a minute, the pain subsided to a dull throb. After five minutes, the attack was over.
I smiled at him. He smiled back. “You’ve got cluster headaches,” he said. “They respond to oxygen. It’s the best way to diagnosis them.”
After fifteen years, I finally had a diagnosis and knew how to treat it: Oxygen. Something so simple, freely available in the atmosphere. After wasting money and time and hope on false promises, I was both relieved and furious.
I am lucky. All I had to do was fall in love with a physician who actually knew what cluster headaches were and how to treat them.
The medical community frequently talks of the importance of caring for patients versus treating diseases, espoused most notably by William Osler, the famed Canadian physician and founding member of the Johns Hopkins Hospital, form a cornerstone of the physician/patient interaction, the questions asked, answers absorbed and noted, diagnosis and treatment given. In “The Master-Word in Medicine,” Osler writes, “The practice of medicine is an art, not a trade; a calling, not a business; a calling in which your heart will be exercised equally with your head.” I see this empathy exercised in my husband’s eyes when he comes home from work, exhausted. So much of his day is dictated by the business of medicine, insurance company directives based on the most cost-effective way to treat a disease, instead of the patient-centric view he favors. On a bad day, he pours two fingers of scotch and retreats to his study. He’ll crank Rush on the stereo to play along on his bass guitar for an hour before re-emerging. Then it’s my turn then to question and listen, empathize and soothe.
“Some people are just really sick,” he says. “And I can’t do anything to help them.”
These are the ones keeping him up at night. The ones I hear him calling to check on after we’ve put the kids to bed. I see the toll this caring takes, and I offer the only thing I can in these situations, my own kind but failing words.
In 1958, Eugene Parker, a professor at the University of Chicago’s Fermi Institute published an article in the Astrophysical Journal, “Dynamics of the Interplanetary Gas and Magnetic Fields,” theorizing that high speed matter and magnetism constantly escape the sun, affecting space and all the planets of our solar system. We now call this phenomenon solar wind, and it’s repeatedly been proven to exist through observation, although there is still much about it we don’t understand.
In July 2018, NASA plans to launch the Parker Solar Probe to within four million miles of the sun’s scorching surface. Scientists hope to finally gather data on why the corona burns so much hotter than the surface, why solar wind accelerates to a million miles an hour, and what this plasma-puzzle and resulting space-weather means to us.
Cluster headaches are caused by abnormal activity in the hypothalamus, that oldest, deepest part of the brain controlling circadian rhythm, temperature regulation, thirst, hunger, and our autonomic nervous system. A recent study compared MRI images of patients in an active cluster cycle with MRI images after the cycle’s completion. Results indicated during a cycle, the hypothalamus is actually larger and operating in overdrive, explaining the cyclical nature of the attacks always happening at the same time of year. It also explains why I’m always hot during a cycle, why exercise and overheating can cause an attack, why my head seems to be uncannily attuned to changes in barometric pressure. My lizard brain, that most primeval and essential regulator of homeostasis, turns traitor. But, no one knows why, or why this hyperactivity causes pain.
My husband and I sit on the back porch discussing a recent Atlantic article about what pain actually is and how it is measured. “You know,” he says, “how we treat pain is actually pretty barbaric. Opioid derivatives have been around since the Middle Ages. Years from now, people are going to look back at us like we look back on bloodletting.” He takes a sip of wine. “We don’t even know how pain pathways work.”
I slap a mosquito buzzing at my ankle, feel the tingle of the impact on my palm. How is it possible that humans understand how black holes form but not the sensations within our own bodies?
Nociceptive pain, pain caused by some visible trauma to the body, is easy to treat. Fix the problem and the pain goes away. But how do we treat neuropathic pain, pain with no discernable cause, or with a cause that we don’t yet understand? How can physicians even know that the pain is real when they can’t see it or touch it, when language, the very thing they rely on to know of its existence, is completely obliterated by the pain?
Saturn is the brightest planet during the longest days of June because it’s opposite the sun in our hemisphere, reflecting the sun’s light back to us and becoming visible to the naked eye. I find myself tracking Saturn obsessively in those long summer days when I, too, sit in opposition to the sun, waiting for the next attack, waiting for a real explanation, waiting for this pain to pass.