Leslie Kendall Dye | Longreads | November 2017 | 10 minutes (2,770 words)

The onset of a southern California rainstorm, as seen from the back seat of my mother’s Toyota Corolla: A single raindrop lands with the sound of a bullet against an armored car. A splash across the windshield — heart stopping. As the sky shifts from pearl gray to dense slate, the fusillade comes faster, staccato, rapid fire. The car is engulfed in water, great pooling streams slide across the windshield; the wipers can barely keep up. The rainwater mixes with oil drops on the road — a hazardous blend: The tires struggle to gain traction and the car swerves on the suddenly slick pavement.

I awake tonight to a first bullet in such a cascade, but it is not rain.

It is pain.

Pain is a short, sharp word that sounds like what it is — a drumbeat, a jab, the thrust of a knife. Still, the sound of any one word can’t contain the sensation of pain’s total dominion over body and spirit. At first pain​ is staccato, but it becomes a wash, a downpour, a drenching. It flows through every pipe in the body, pooling in all the corners, mixing with the oil of your joints and forcing your vessel, your own body, to swerve madly off course.

I’ve driven through these deluges all my life. I was 5 when I was first jolted awake in the middle of the night by a riotous awareness that rats were gnawing through my muscles. I called out and my mother came, nodding and shaking her head. Pain found her at the same age.

My memory of our midnight ritual: My mother lifts me from my bed, carries me to a running bath, and places me under a waterfall​ of heart-stopping heat. She hands me two chewable St. Joseph’s baby aspirin.

I gasp as the scorching water engulfs my legs. I adjust quickly though, enjoying the heat as it penetrates my muscles and confounds my nerve pathways, blocking the pain like a crossing guard for human electrical impulses. Heat holds a STOP sign up to the pain signals and a WALK sign up to the sensation — whatever it is called — for the body’s experience of heat. Another way to see it: My brain sends signals for heat down the same route that it does for those of pain, and since heat is the newer, abrupt sensation, it interrupts the chronic flow of pain. Eventually, the pain will find another neural path, some parallel path, or maybe it will squeeze into the same canal — it amounts to the same thing — heat and pain will at some point co-exist in my pathways. The heat cannot override the pain indefinitely. My mother’s method is designed to stay a step ahead. First, hot bath. Then, aspirin. By the time the heat loses its power, the little chewables should do their job.

This concept — that we can interrupt pain with other sensations that block the pain signal’s path to the brain, is known as the Gateway Theory. Non-painful input closes the “gates” to painful input, so pain impulses can’t travel to the central nervous system. If you’ve ever vigorously rubbed a leg after banging it on the coffee table, you have supplied a competing input that shuts off the pain input. You have disrupted the insistence of pain.

A question for science: is the pain still there, then? And if there is no injury that causes the pain, why is it ROUTINELY flowing down the pathways of an otherwise healthy child’s nerve cells? A question for a 5-year-old driven to philosophy by her body’s self-produced torment: Can I force my mind to shut this down? Who is in charge here, anyway?

My mother holds me in the steaming tub, turns the temperature higher in safety-defying increments, until my skin begins to itch, and only when I can stand it no longer does she lift me out, and in a crude effort to trap the heat, wraps my legs tightly in towels. Then she carries me to bed. Her mother had done the same for her, securing the towels with rubber bands. The bath has increased my circulation; my heart throbs and jumps. I sink into the pillows, reassured by the tightness of the towels and the promise of the baby aspirin.

In this memory my mother is my guardian angel. But was she also whispering a hex into my ear?

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“I’m sorry I cursed you with this,” she says over and over, an incantation that casts a spell of despair. “This is your life’s companion.” Her face tells me that pain can never be vanquished. Her choking regret compromises the power of her maternal sorcery; she is part angel and part enemy.

A hint of the dusty pink Los Angeles sunrise seeps through my curtains. I drift to sleep.

No one knows the bodily origin of these peculiar aches. Doctors have tested me for rheumatological abnormalities, discovering some markers of pathological immune activity, but not enough to diagnose me with any particular illness. One doctor told me it was “subclinical lupus.” The blood work, the skin tests, the mysterious and mysteriously unconnected recurrent symptoms did not fit the profile of any discrete condition. My skin throbbed with periodic hives; my tonsils were chronically infected, my hair fell out in terrifying amounts after every minor virus. If it was a syndrome, it had no name.

Medicine is often more questions than answers, it is often muddy pseudo-diagnoses, and even muddier treatment plans.

Medicine is often more questions than answers, it is often muddy pseudo-diagnoses, and even muddier treatment plans.

“Leg aches.” That’s what my mother called them. Now the ache is opportunistic, seeking out areas of my body that have suffered injury.

* * *

I’m a ballet dancer. I was a ballet dancer. In twelve months, I’ve had both hips refashioned in an elaborate surgery to correct congenital hip dysplasia. Healthy hip sockets ought to provide full “coverage” to the ball, making for a smooth glide whenever the leg is activated. Dysplastic hips are those with shallow coverage, which leaves the ball exposed to wear and tear. The soft protective cuff of tissue that surrounds the hip bone — known as the labrum — wears through when the pelvis does not fully protect the ball of the hip. And so the surgeon sawed into my pelvis twice — once for each hip, slicing and repositioning to secure the balls of my hips more firmly into my pelvis. The hope is that this will preserve the joint, prevent the need for an immediate hip replacement, and afford pain relief. And it does. Still, these areas of my body are now damaged: My brain interprets this tissue as scarred. My old foe, the invisible agent that has yanked me out of sleep all my life, seeks out this weakened flesh, like a vampire hunting for prey.

* * *

The hip surgeon offers a wan smile and looks at the floor: “We can fix what’s structurally wrong, but pain is as mysterious as the brain itself. I can’t say you won’t be in pain after the surgery. Some people don’t have very much pain. Other people have a lot of it.” He shoves his hands in his lab coat pockets.

* * *

Tonight, I awaken on a breezy spring night to the sound of the first bullets on the windshield: Pain-pain-pain. Rat-a-tat-tat. Three bullets fired.

It is no easy task to swim through waves of pain to consciousness, but trying to sleep through it is far worse. “Relax into it,” some say, “that will help.” “Don’t try to change your state of being, just observe it, and the pain will loosen its grip.” To this, I say: fuck off. Ignoring pain only increases its determination. At least aspirin does something tangible; it shuts down the release of prostaglandins, which cause inflammation in the body. Aspirin might work. But in “observing” my pain passively — as though it were just another sensation — I come to this conclusion: It isn’t like any other sensation.

My husband lies peacefully next to me. One groan from me, the click of the heating pad, the light of my cell phone guiding me to the dresser, the rattling of the Advil bottle, these all threaten to wake him. I stumble through our pitch-black room. It faces a brick wall, and even in the daytime it gets almost no light. Sometimes a neighbor across the alley turns on a reading lamp, casting through our sheer curtains a glow like artificial moonlight in a stage play. Otherwise, once the sun goes down, our bedroom is a vortex of pitiless darkness. There is no distraction from the pain, the pain, the pain.

Some people have more “electric” pathways. This is how a physical therapist explained it to me as she rubbed a thin red line of angry scar tissue across my left breast last week. The scar looks like a knife wound, and I usually cover it up, ashamed of the violence it suggests. The scar is overstimulated, she says. Rub it with a towel, up and down, up and down. Block the pain by creating a new sensation. The Gateway Theory, this is what she is describing. It always comes back to the pathways. She teaches me to guide my finger up and down the scar, breaking up its knotty tissue, separating fascia from skin. The goal is desensitization: A permanent disruption of the signal that causes itching and burning. The signal will seem like a pulsing light that just suddenly goes out, stops blinking, ceases — if the therapy works.

I bear this scar because in the same year that my two hips were refashioned as though I were a damaged doll, a hemangioma blossomed in my third rib, growing so quickly it fractured the bone. A surgeon cut through my soft breast skin — deep into my thoracic cavity — and sawed out four inches of rib. GORE-TEX mesh hangs, hammock-like, between the two stumps of rib, and the area throbs. The scar itches. This time the signal tells me more than pain pain pain; it tells me something is wrong. An error has occurred. Your door is ajar. There’s a hole in your chest!

Some people don’t have very much pain. Other people have a lot of it.” The surgeon thrusts his hands in his pockets — a gesture of apology, or defeat.

Doctors are frustrated by untidy ailments. Nobody wants to be confounded. I empathize with them, offering apologies to the people from whom I seek answers. I was wrong to bring to your doorstep this irksome, unmasterable problem. So sorry to bother you. I’ll see myself out.

No one likes a complainer. No one likes to complain, either, the pain patient least of all. We are so tired of our own voices lamenting insoluble problems.

Tonight, the bullets have turned into a cascade, a runaway storm. Thunder and lightning. Storms are my metaphor for pain. Funny then, that bodies of water are its most effective treatment.

It’s time to run the bath. I grip my muscles en route to the bathroom, afraid to wake my spouse and my young child sleeping down the hall. The waterfall of heat awaits. When I was 5, I could count on it to work. Now, I never know. It might at least sedate me. Dazed yet hyperalert, I teeter toward the bathroom. I sit in the tub as the water runs but I don’t turn on the light — my husband needs his sleep. I try to breathe evenly, to imagine my muscles softening like butter. I try to merge with the heat, the water, the thunderous noise of the faucet, the groan of the pipes in the darkness.

* * *

It’s not all in your head. These are words of comfort offered to the pain patient going mad.

But pain is in the head. It may originate in tissue pathology or trauma — it also may not — but once the brain awakens to a fired pain impulse, it interprets the signal. Some brains interpret more dramatically than others. It’s not all in your head, but it’s definitely in your head.

If my mother had not framed it as a curse, as a very regret for having birthed me, would I feel less agitation during these episodes? Can useless regret be passed down as unfortunately as a gene for pain? Is it a habit, easy to develop but nearly impossible to break, one that perhaps her mother passed down?

I will myself toward optimism. My hips will heal. I have some days when I can move through space, attend a ballet class even, without torment. The leg aches vanish as mysteriously as they arrive; if looked at the right way, there is hope in this.

My little girl occasionally awakens to pain in the night. It may be “the gene,” as my mother called it, but it seems more like growing pains.

Still — if she does have “the gene,” I will never tell her that I cursed her; I will never lament her condition as my crime. I know that there is at least one thing worse than pain — and that’s processing your terrified mother’s guilt. I will not speak of “genes” or “curses.” I will not choke back sobs. Instead, I will tell my daughter that the sun comes out after a storm, and with it comes a rainbow.

She may believe me if I begin to believe it myself, if I find a way to believe that pain is conquerable. Accepting pain as perpetual and resigning oneself to defeat, these are acts of madness that usher in a yet more monstrous despair.

I will encourage my daughter to think of pain as transient. If I stretch the truth, lie even, and tell her that life is merciful instead of arbitrary and often cruel — maybe then I will believe it too. And perhaps when I believe, I will be granted the most that I can hope for: Longer periods of peace.

Accepting pain as perpetual and resigning oneself to defeat, these are acts of madness that usher in a yet more monstrous despair.

In this quest, are chronic pain patients different from anyone else?

Pain patients are often racked by fatigue, by a regret at times for having been born, if life is but something to endure.

In my early twenties, as a young performer, I fell in love with a character in a play. I saw a production of “The Seagull.” I watched the actress who played “Nina” transform from romantic to cynical in one act, from tall and straight of spine and light of voice and foot to bent and bowed and weary, to heartsick and broken. For years, I clutched the play to my chest, reciting Nina’s last lines — her message to us, the audience, before she breathlessly leaves the stage. What does she so urgently wish to impart?

Lines from Chekhov rise from my youth as the bathtub drains:

What matters for a writer or an actor is not fame, glory, or the things I dreamed about, but knowing how to endure — how to bear your cross and have faith.

I laugh at my histrionic memory. What meaning did I see in these words, memorized so eagerly and so long ago? I do not wish to bear a cross. I don’t have faith, not in the religious or spiritual sense. Of what consequence are Nina’s words to me?

The lines rise again, insistent over the gurgle of the drain. Sweating from the heat, I sift through the words for the ones I want.

What matters is knowing how to endure.

My 20-year-old self had already grasped the lesson she would need over twenty years later. She seized upon it, held it close, and saved it for a rainy day.

It is a question, I realize, of courage.

It is a question, I know, of determination.

In our quest for psychic and physical relief, in our mad and wondrous attempt to stretch our capacity for endurance, are pain patients any different, are we at all different — from anybody else?

* * *

Leslie Kendall Dye is an actress and freelance writer based in New York City.

Editor: Krista Stevens