Kyle’s Hair

Michelle Dyer

I am sitting on a small couch, in the dim light of room 1142. I’m in the neuro-ICU of Phoenix’s Level-1 trauma hospital. My husband Kyle is lying in bed, motionless, presumably asleep—but there’s no way of knowing, really. A ventilator is breathing for him. He cannot move anything—no muscle, no joint—except his eyes, which are, at the moment, closed.

Thalia, Kyle’s nurse, comes in. I jump inside my heavy skin. It’s been seven days since Kyle’s brainstem stroke; four since he was diagnosed with locked-in syndrome, a condition in which a person remains cognitively intact but completely immobilized. There is a chasm inside me, all around me, in whatever room I occupy. When Thalia enters, she is sweet and earnest and warm, a woman in her early thirties like me and Kyle, so I force a smile. She checks the machines and fluids, scribbles on a little notepad she pulls from her scrubs pocket. She adjusts Kyle’s blankets and fluffs up his pillows, humming softly. I reprimand myself for not thinking he might need fluffed-up pillows.

“Kyle’s hair looks like it needs a wash,” Thalia says. She’s right. His hair, blonde and wavy and sitting at his collar bones, is oily and matted. Thalia looks at me and I stare back. I’m unsure of what to say. She looks at her watch. “My shift ends in fifteen,” she says. “We could wash his hair.”

“Sure,” I say. I feel a knot in my stomach. I don’t know how to wash his hair. I don’t know how to touch him anymore, not really, not when he’s like this.

Thalia grabs supplies from the closet: combs, hand towels, miniature shampoo bottles, a vomit bucket. She fills the bucket with warm water and brings it to the side of the bed. She soaks the small hand towel, then dabs his whole head. I follow, feeling out of place. Kyle is a stranger to me now. I am a stranger to me now. Thalia is perhaps the real stranger, but I trust her more than I trust myself. We squeeze shampoo on our fingertips and make circles on his scalp. The smell is intoxicating. I drift to a meadow of lavender and lemon balm. The ventilator gurgles, Kyle’s phlegm catches in his throat, he violently coughs, his whole body jackknifing, and I’m no longer in that meadow but on the brink of some abyss I can’t yet name.

Thalia begins to rinse Kyle’s hair, the same way we got it wet: stippling his scalp with a wet towel in her tender clutch. She cradles his head—a heavy yet fragile bowling ball, I think—and asks me to scoop up his hair. I do, and she finger-combs it out. It splays, a messy starburst hanging off the edge of the pillow. I run my fingers along his meandering hairline, down the curve of his ear, over his coarse beard. His eyelids flutter.

Thalia makes a clearing in the wires and tubes at the head of Kyle’s bed and stands behind him. Not up for much more, I sit on the small couch as she detangles his hair, one section at a time. Methodically, meditatively, like a weaver immersed in her craft. I continue sitting and staring.

Thalia breaks the mounting silence. “How long have you been married?” she asks.

I take a moment to think. “A week and four days.”

Thalia looks up at me, wordless.

“We’ve been living together for four years, though,” I add, trying to justify my grief.

“I’m so sorry,” she says, whispering. I look away. She returns to combing Kyle’s hair.

After some time, she breaks the silence again. “I wish this is what all nursing was.”

“Oh?” I say.

“Don’t get me wrong, I love my job,” she says. “But I don’t get to do enough of this stuff.” She holds up strands like horse reins. “This is the stuff that matters.” Sometime later, I will understand what she means by this: tenderness. Compassion. Dignity. Care of the soul through care of the body. In this moment, however, none of this registers. I’m wiped blank.

When she finishes, she swings over to the side of the bed so she can look Kyle in the eye.

“Kyle,” she says sweetly.

Kyle’s eyes open. The rest of his body remains immobile.

“Would you like me to braid your hair?” she asks. “I will give you the three options.”

Kyle closes his eyes, the sign he is ready to answer.

She begins, “Yes—”

Before she continues, Kyle opens his eyes on the word “yes. ”

Thalia begins knitting his hair. She starts at his hairline and stitches her way down to the tips. When she’s finished, she stands back to admire her masterpiece: two tightly bound and symmetrical French braids. For the first time in a week and a half, Kyle looks fresh and bright.

Thalia holds a mirror up to Kyle’s face. He can’t smile, but I see in his eyes he is delighted. The wry juxtaposition of beard and braids, the feeling of cleaned hair, the new look. She pats the top of his head to reinforce her handiwork. “There,” she says. “That’ll keep your hair from getting knotted.”

A week later, I am sitting in the room of a long-term acute care hospital where Kyle has been transferred. It’s the in-between place from intensive care and inpatient rehabilitation. Kyle has survived the initial trauma of the stroke, the confusion and chaos of the ER, the procedure which removed the near-deadly blood clot from his brainstem. He has been weaned from the ventilator and now has a tracheostomy tube to protect his airway. Several days ago, his doctors articulated a dismal prognosis for locked-in patients. Most people with locked-in syndrome, they said, will spend the rest of their lives physically confined but cognitively alive. Unable to move any part of their body except for their eyes, tethered to feeding tubes, breathing tubes, and catheters, they live internally, creatures of intellect and imagination. Through a series of yes-no questions, they asked him whether he wanted to pursue rehab. Kyle blinked a yes. He believes he will beat the odds. The doctors believe he will be no different than the statistics they described. I am not sure what I believe.

Kyle’s nurse is off somewhere right now, doing everything else except tending to him. When Ali, Kyle’s longtime friend, arrives for her weekly visit, I relish the help and opportunity to wash his hair again. We proceed, just as Thalia and I had done, only this time I take the lead. We are clumsy and messy, two rookies woefully unprepared.

After Ali and I finish washing, I ask her if she knows how to French braid.

“I have no idea,” she says. We inspect his hair as if it were suspicious mold on a loaf of bread, wondering what, exactly, we could touch. Ali says, “I could braid it, but that means we’d have to lift his head.”

I don’t want to do that. I’m too afraid I’d break it. I try to remember how Thalia had done it, but I can’t recall. Was it something she learned in nursing school? Was it plain common sense?

Sensing my hesitancy, Ali says half-jokingly, “We could do a man bun.”

“I can do that!” I perk up. I peel the black elastic hair tie from my wrist and, in quick motion, tie a messy bun in Kyle’s hair. The first time I tied his hair into a bun was years ago. It was morning, and he was getting ready to coach the varsity girls’ volleyball team in a regional tournament. I sneaked up behind him in the bathroom, combed his hair with my fingers, then tied it into a messy bun. Show up to the tournament like that! I said. I brushed his shoulders, smoothing out his jersey. The girls will love it. I kissed his neck, pressed my body against his.

Now, I wonder if I will ever take pleasure in Kyle’s body again. I wonder if life for us will be paralysis in every sense of the word. A suspension we did not ask for nor want.

“There,” Ali says, tapping the sloppy bird’s nest atop Kyle’s head. “That’ll do.”

When I arrive at Kyle’s hospital room the next morning, the bun has mysteriously moved. Instead of perched on the crown of his head, it has fallen underneath, right at the nape of his neck. It’s now in the spot where his head and neck meet—right at his brainstem. But I can’t touch it. I am afraid of it the way a child is afraid of spiders or an adult is afraid of cliff ledges. If I get too close, I might jump. It’s ground zero, the site of the blockage that caused his catastrophic stroke. It’s radioactive, the danger zone, all rubble and debris and total devastation—a spot, the size of a thumbnail, I do not and cannot go near.

So I leave the messy bun alone.

Days later, when I attempt to wash his hair again, I discover the hair on the back of his head has become densely matted and tangled. The hair tie, swallowed by the thicket, is irretrievable.

I can’t wash his hair, either—not with this impenetrable fist-sized clump.

Realizing I would need to cut all of it—the ratty bun, the hair tie, his long hair I so loved—I excuse myself out of the room. I need to compose myself. I rebuke myself for not braiding his hair like Thalia did, for being dumb enough to try the man-bun again. For encouraging him to grow it long in the first place.

“I need to talk to you about something,” I say, entering Kyle’s hospital room. I sit on the edge of the bed. At this point, he had obtained and mastered the eye-gazer, a device that tracks his eye movements so he can type on a screen.

“You probably know by now that your hair is really tangled,” I say.

Kyle’s eyes dart across letters on the screen of the eye-gaze device, typing the words, “I know.”

“And the thing is, you’re going to rehab soon, and you can’t have a giant hairball on your head.”

Kyle listens.

“So, I’m afraid—I really don’t want to do this—you can tell me no if you don’t want to, and I won’t, but I really think—I really think it’s time.”

 I stop, not knowing how to say it, so I begin again. “I need to cut your hair.”

His eyes dash across the screen again, now typing “OK.” If this were normal Kyle, I wouldn’t have questioned his easygoing, amenable nature. But now he is locked-in, unable to do much of anything except comprehend the world around him and communicate via a device. I’m sensitive to his agency.

“Are you sure?” I ask. “Are you sure you’re okay with this? Because I don’t want to do something you don’t want me to do. Tell me now what you want.”

He responds on the screen: I know it’s best to cut it. I’m okay with it. I trust you.

I stand, adjusting the bed to waist height and Kyle into an upright position. At this point, five weeks after the ICU, he can lift his head and hold it somewhat steadily. I lean into him, wrapping my arms around his neck. With scissors in my right hand, I cradle his head in the hook of my left elbow, his face firmly planted in my chest. Without looking, only feeling, I find the hair tie and begin cutting. At first, I snip, snip, snip. But the scissors are dull, so I saw and sever my way through. In one final cleave, I pull the tuft from behind his head and show it to him.

Kyle types on his machine, I liked that. He moves his gaze to my breasts, then back to my eyes. The left corner of his mouth lifts ever so slightly.

The next day, when Kyle sits on the edge of the bed for the first time with the help of occupational and physical therapists, I notice a jagged hairline along his neck, a horrific rat tail from a section I missed. I’m grateful his hair is now short and easy to manage. I’m grateful, too, he’s not able to see it.

Shortly after my whack job to Kyle’s hair, we left Phoenix and flew to Chicago via a medical flight so he could attend a world-renowned stroke rehabilitation hospital. We could only bring two suitcases and a backpack on the plane. For nine weeks, Kyle spent six hours a day in intense rehab. In speech therapy, he regained movement of his lips and tongue and began making intelligible sounds. In occupational therapy, he practiced pinching with his left index finger and thumb. In physical therapy, he hung from a harness while a therapist and her assistant moved his legs so he could walk on a treadmill. In recreational therapy, he putted golf balls one-handedly from his wheelchair.

I didn’t have another place to stay, so I slept on the small couch in his hospital room and showered before the medical team arrived for morning rounds. I explored Chicago during the daytime and brought back food from nearby restaurants for dinner. Sometimes I’d get lost in a library. Most of the time I daydreamed in a park.

After nine weeks in inpatient rehab, Kyle began an outpatient rehab program through the same hospital. The program was for people who have graduated from the level of care a hospital provides but who aren’t ready to return to full community life. We continued to exist in some kind of suspension. We weren’t home and we weren’t back to normal life, yet Kyle continued to regain motor function. By this point, he was using a power wheelchair. He could mostly dress himself, but I assisted him as he put pants on in the morning. He could eat solid food, but I prepared his meals. He could talk, but his sentences were slow, his words soft and slurred. I transferred him from his power chair to the toilet, tied his shoes, and talked to servers at restaurants on his behalf. Everything—brushing teeth, opening a door, scratching an itch—required conscious, laborious effort.

Days after starting the outpatient program, we enter the Great Clips salon in downtown Chicago. No other customer is here, despite it being lunch hour. Darcy, the stylist, greets us at the front desk. “You must be Ky-le!” she says in singsong. I assume she knows this because I had called earlier, asking if the salon was wheelchair accessible. I wonder how many times she gets that kind of call, how many clients of hers use power wheelchairs.

Darcy sports a pixie haircut, bleached blonde with pink highlights. She leads Kyle to her booth, practically bouncing along the way. Kyle jerks his wheelchair around the desk and other salon fixtures, the gears clicking and clacking. He nearly knocks over the shelf with shampoo bottles as he snakes his way forward. Darcy giggles and says it’s all good, all good.

 A man walks out of the back room. He pushes a broom, a towel slung over his shoulder. He sees Kyle and Darcy trying to weasel their way into her space, and, wordlessly, pulls a salon chair out of the way. He motions for Kyle to center himself in the mirror, which Kyle does with surprising grace, despite my vision he’d shatter the mirror. Darcy, undaunted, stands behind Kyle, contorting around the chair’s headrest to reach his hair. It’s awkward, but she shifts around to make it work. Before she can say anything, the man taps the headrest. He flips the knob and releases it. He gives the headrest to me and goes back into the room from which he came.

I am sitting in the Great Clips salon, holding the headrest to my husband’s power wheelchair, and I am wondering how to do this. Do I tell Darcy that he had a stroke, so his speech may be difficult to understand? Should I tell her that, despite his slow sentences, single-toned sound, and slurred enunciation, his intelligence—the beautiful kaleidoscope of his mind, the thing that made me fall in love with him—is unchanged? Should I tell her that he might have trouble tilting his head to the right and holding it there while she clips his hair? Should I warn her that he may laugh randomly and uncontrollably, and that it’s nothing she did, just ignore it? Or that she should be extra careful with those scissors because doctors didn’t give him much chance of ever breathing on his own again, let alone getting a haircut at a salon in downtown Chicago? Should I tell her how I still don’t forgive myself for not braiding his hair properly, for letting it get to the point of butchering the knot off? Or that actually, what I really want is his hair to be long again, the way it once was?

I don’t know what to do, so I sit. I’m not a mother, but I feel motherly—putting on his pants and tying his shoes, constantly running around the city to pick up things he needs or making one appointment after the other, maintaining the endless vigilance I feel in crowded places—I never did these things when I was just his partner. As I watch him with Darcy, I sit on edge. I want to speak for him, but somehow I can’t. It’s not that I can’t find the words—it’s that I’m not sure which ones are right.

Kyle, meanwhile, is getting a haircut by a cute pixie girl. She has platform shoes, a crop top showing her belly button ring, discreet tattoos dotting her forearms and biceps. As she snips his hair, she converses with him: she asks if he likes to watch movies, what his favorite TV shows are, what his favorite season in Chicago is. Her head bobs, syncopating with each snip. When she asks—with either remarkable unawareness or complete lack of assumption, I’m not sure which—what he does for a living, he responds with great effort, “I had a stroke. I’m doing rehab.” Her response to this is like all others: right on, man, right on. At the end of the haircut, she stands behind him. She runs her fingers through his hair. She massages his scalp. They both stare ahead in a kind of reverence. She says, “look how handsome you are!” Kyle turns his head an inch. The left side of his mouth hikes as if caught in a fishing line. His left cheek squeezes the corner of his left eye. The right side of his face remains still. Darcy brushes stray hairs off his neck. He says something I don’t catch, then she giggles. She nudges his shoulder, the way I do when I flirt with men. I like seeing this: a woman adroitly touching and teasing him, him responding with delight.

Fourteen months later, Kyle and I sit near the entrance of Barber Bud’s Barbershop in western North Carolina. We’ve just moved to the area after completing rehab in Chicago. Chris, Kyle’s dad, brought us to Barber Bud’s. He’s been seeing Bud for years now, and Bud knows all about Kyle from Chris’s monthly appointments. Taxidermied animals—moose, deer, fish—adorn the walls, as do yellowed newspaper clippings of school sports teams. Reclaimed church pews form a waiting area along the perimeter, and behind us is a mural of business cards affixed to a cork board, which itself is covered in a camo-patterned sheet. Near the barber station, a neon green poster board has “Haircut: $15.00” written in permanent marker on it. I can’t believe how cheap it is, but then again, Barber Bud is the only barber in ten miles.

After Bud has brushed off hair clippings from an old man’s neckline, he says, “alrighty, friend,” taking the drape off. The old man, a bit wobbly, stands up, and pays Bud in cash. “You holler next time you need a haircut, ya hear,” Bud says as the old man leaves.

Bud deftly sweeps the fallen hair off the chair. Then, as if wiping the seat of a throne, he gestures to Kyle.

Kyle stands clumsily, his right arm bent at the elbow, hand and fingers curled as if holding a can opener. He chooses not to use his cane. He lets me know this by dramatically pushing it aside. It clanks on the ground. He stumble-walks over to the chair, hobbling from his unbending right knee. As Bud stabilizes the chair and offers a hand at the small of his back to spot him, Kyle braces himself, then sits down. Putting his left hand under his right knee, Kyle lifts his leg and secures his foot inside the metal footrest.

“Man, it’s a true pleasure,” Bud says, his Southern accent thick. “Your dad has told me so much about you.”

“Likewise,” Kyle says.

“You’re a miracle, I hear,” Bud says. He prepares his razors and clippers for the haircut.

“That’s what they say,” Kyle responds, a well-rehearsed line.

Bud doesn’t need to ask what kind of haircut Kyle needs—he just clicks the razor on and begins. As Bud works, he asks Kyle about his stroke and his recovery. Having heard this conversation play out before, I tune it out. My mind drifts. I see what I often see now when Kyle is engaged in everyday tasks: the man he used to be and the man he was prognosed to be, images simulcast in some alternate reality. Kyle pacing the court as he coaches high school volleyball; Kyle tethered to hospital machines. Kyle vigorously serving the ball in tennis; Kyle flanked by physical therapists moving his limbs. Kyle headbanging to heavy metal as he cooks over a sizzling skillet; Kyle suspended by harnesses over beds and treadmills.

Bud finishes cutting Kyle’s hair. He twirls the chair around, and I see my husband, hair tidied and freshly trimmed. His face lights up as he looks at me, the corners of his mouth more even than they have been in months. He casually lifts his left arm and touches the back of his neck, a gesture that, only months before, took excruciating effort. Feeling his smooth hairline, he remarks at how nice it feels. He looks like he did when we first met, years ago: shy, clean-cut, content; a man worth getting to know.

Michelle Dyer is a writer originally from Albuquerque, New Mexico. Her poetry and prose have been published in The Examined Life Journal (2022), Psychological Perspectives (2022), The Fourth River (2021), and Intima: A Journal of Narrative Medicine (2020), among others. She currently lives and teaches in Asheville, North Carolina. You can read more of her work at linktr.ee/dyerwrites.