LURLENE MCDANIEL KEPT ME COMPANY in the hospital. Her young adult novels—which included Six Months to Live, I Want to Live, So Much to Live For, I’ll Be Seeing You, A Season for Goodbye, Sixteen and Dying, and Someone Dies, Someone Lives—featured stories of teenage love for the terminally ill. I was not terminally ill, just plagued by chronic asthma that sent me to the hospital twice a year, yet her novels hit a sweet spot for me. By the time I was a sophomore in high school, I had logged over one thousand hours in the pediatric ward of St. Elizabeth Hospital in Edgewood, Kentucky, but had been kissed only twice. My lopsided social development placed me squarely in the center of McDaniel’s target audience. I was a romance-hungry teen with an encyclopedic knowledge of the ER triage process and not a clue as to the symptoms of true love.
McDaniel’s books perpetuated this imbalance. Her stories were equal parts medical reality and romantic fantasy. Scrupulous research informed her characters’ ailments, and patience was exercised in the progression of each disease. McDaniel deftly allowed the physical and emotional torment to play out in real time, the plot beholden to the disease and not the other way around. She enabled me to feel, as a reader, the wrenched nature of waiting for test results and treatments, the sensation of being slowly pulled into a future that doesn’t belong to you, a future where punishments are doled out for crimes no one committed. Such nuance was nonexistent when she wrote of young love. The passionate tension between her characters played out exactly as it did in my own daydreams. It was all declarations of undying love with no follow-up explanation as to what any of it meant. McDaniel’s good Christian values—an ever-present subtext in each book—prevented her characters from doing the deed or even copping a feel; still, the scenes in which young lovers pressed their lips together in ecstatic bliss had all the buildup and release I dreamed of.
Each novel had a predictable formula designed to illustrate how in sickness love metastasized. Within the first fifty pages, at least one of the characters would be diagnosed with a deadly disease. In my favorite, Don’t Die, My Love, it was brown-eyed football quarterback Luke who developed Hodgkin’s lymphoma and his blonde-haired, blue-eyed girlfriend Julie who remained by his side through the radiation and chemo treatments. Julie was Luke’s personal cheerleader, so tirelessly enthusiastic in her belief that he would recover that she had no energy or will left to consider her own destiny. Her college applications were left incomplete. Submitting them was pointless until Luke morphed back into his muscular quarterback self and the Division I colleges came calling. Julie was swimming in such a deep sea of denial that she couldn’t fathom Luke’s demise even when he brought it up himself. He had given her a promise ring after all, a silver band set with a turquoise, to signify his love. To Julie the promise ring meant they would get married when Luke got better. To Luke it meant if.
Julie’s interior life, to say the least, was fraught. Her exterior life, on the other hand, the way others perceived and described her, was tailored no better than a hospital gown. Luke told her again and again that she was beautiful, but he never said why. What made her so attractive to him besides her blonde hair and blue eyes? Other than being a good student and good girlfriend, she had no distinguishing characteristics. Luke’s declarations of love were similarly generic: carving their initials into a tree trunk; shouting, “Luke loves Julie!” into the echoes of a deep ravine; and bringing her flowers, always flowers, to show he cared. According to McDaniel, “Julie and Luke went together like ice cream and cake, sunlight and summer.” I didn’t question this logic. The saccharine similes and generously apportioned kissing scenes were enough for me as I lay on my hospital bed, killing time between nebulizer breathing treatments.
My own asthma was chronic, but also pretty well controlled by a host of medications and semiannual hospital visits. I never truly feared that my breath would be taken away, bronchial tubes tightening until oxygen could no longer pass through them. Unlike McDaniel’s characters, for whom the fear of death was immediate, I became concerned about death only in an existential sense.
A childhood of Sunday school had informed me of God’s plan to send Jesus as a get-out-of-hell-free card for all mankind, but somewhere around age ten I started to worry about eternity. It seemed like a really long time. While I was grateful to Jesus for preemptively saving me from the flaming underworld, I wasn’t keen on the idea of going to a party that never ended. Everything I knew had a start and a finish. Spring soccer matches gave way to summer swim meets, which were replaced by fall soccer games until snowflakes covered the fields and plastic sleds were dug out of the dusty back corner of the garage. I was never stuck in one spot. But after my final breath, God promised to scoop me up from an earth of seasons, a world that followed the curve of a narrative arc even closer than it followed the sun, and set me in the clouds for a never-ending reunion with those I loved. It was too static to comprehend. What age would I be? Did I have to serve my afterlife sentence in the body I had upon death, or did everyone get to spend eternity in the glow of youth? If so, wouldn’t my mother, grandmother, and I be weirded out to all be the same age, feeling less like family than doppelgangers across the decades?
I posed these questions to Ted, the youth minister at my family’s church. Tall and gangly, Ted still had the awkwardness of a teenager despite being in his early thirties. He was married, but thus far without children, so he poured all of his paternal instincts into guiding the middle- and high-school students of our church on the path to righteousness. Though I often felt situated just outside the clique of youth groupers my own age, Ted was an expert at inclusion. He would smile with both his mouth and eyes when he saw me walk into the church basement on Sunday nights, leaving no doubt that I belonged. Youth group meetings often ended with a testimonial, and Ted’s personal go-to story was about how, as a freshman in high school, he had survived intense locker-room hazing, which he received because he had no hair on his body except what was on top of his head. Ted would repeat it exactly that way, “No hair…except what was on top of my head,” until everyone figured out that he was alluding to a conspicuous lack of pubic hair. Every time he told the story my eyes wandered up his body. In a cruel twist of fate, the early baldness between his legs had migrated upwards, and he was already borrowing fine brown hairs to comb across his now bare crown. When he spoke of the locker-room humiliation, I knew he meant it. The words hurled at him by other boys had bruised his heart. But Jesus Christ had tended to him, the good Lord’s saving grace giving him the courage to walk into the locker room day after day. Ted knew that the only thing that lasted forever was the heavenly kingdom. I asked Ted my questions about the afterlife, told him how its incomprehensibility troubled me. He tried his best to sympathize but couldn’t. The eternity that I feared was Ted’s final refuge, the promise on which his entire faith hinged.
I found that the easiest way to silence my hypothetical questions about life and death was to find someone with real problems, and McDaniel’s characters had these in spades. In addition to the chemo, Luke was ordered to undergo radiation treatments for growths on his chest and groin. The radiation, if successful, would likely leave him infertile, meaning he and Julie would never have the biological children required for a fairytale ending. Luke worried this might make Julie love him less. In the fictional world they inhabited, where young women could only be beautiful and young men could only be strong, Luke’s nosedive in virility challenged the destiny of their relationship. Luke still made his promise-ring proposal, but he was up-front about what husbandly duties he would and would not be able to fulfill. Julie brushed this fear aside like all his others. “You’re my choice,” she said. Reading this, I breathed a sigh of relief. Their kismet had clicked back into place. Luke and Julie were indeed meant to be.
I’d had an inkling that my first boyfriend Ryan wasn’t going to be my one true love—I was already his fifth girlfriend of our seventh-grade year—but it didn’t lessen my enthusiasm for the relationship. Ryan had asked me to “go out” after an evening of watching Beavis and Butt-Head cartoons in his basement rec room. I’d been permitted to attend his coed get-together, my first ever, because my friend Amber was in tow and Ryan’s parents were home, peripherally supervising our activities from two floors above. Beavis and Butt-Head repulsed me with their guttural snickers and nostrils flared wider than their beady little eyes, but for Ryan and his friends the duo’s laughter fed their own. A crotch shot of a cartoon Suzanne Somers working her ThighMaster hard set them all off immediately. Listening to their laughter gave rise to a new type of nausea that I’d never before experienced. Was this desire to ogle and sneer at girls’ nether regions the driving motivation behind every kiss, compliment, or flower that teenage boys bestowed? Was my newfound queasiness a natural consequence of the allure all girls attempted to conjure in their bathroom mirrors? Perhaps. Regardless, my evening of silent suffering gained me the first boyfriend of my life. And I relished the thought that come Monday morning the entire seventh grade would learn I had been catapulted to the status of a girl who was liked.
Ryan kissed me once, right after a slow dance at our middle school. Dances were held in the gym, where our principal made a regular effort to police the DJ, who played popular songs like Boyz II Men’s “I’ll Make Love to You.” The principal told us that twelve- and thirteen-year-olds should not be swaying in pairs to such lyrics. I didn’t see the problem, though. The Boyz II Men songs were catchy and romantic, and besides, I didn’t think anyone in middle school was actually having sex. I had heard rumors that a few popular girls with high school boyfriends might have lost their virginity, but I had trouble believing such gossip. My own first kiss with Ryan had been a quick, closed-lipped peck that lasted just a second. Why would anyone take the risk of wanting more?
At youth group, Ted always warned us of the slippery slope that was sexual desire. Sex, he said, created a chasm between you and God, an abyss that prevented you from receiving God’s guidance and left you at the mercy of your own bodily urges, a slave to shame. It was the devil’s greatest tool. Ted always included the caveat that sex was perfectly fine and sanctified between husband and wife, but this was of little help. My parents were fervent believers in the gospel of College Before Marriage, making the prospect of consummation seem light years away. It didn’t matter that I had no immediate desire for sex—the prospect of French kissing was intimidating enough. I still resented its forbidden nature. What if one day I wanted someone to hold me tight all through the night, just like Boyz II Men sang? Would that be so wrong? Ted made no bones about it. The answer was yes. Sex was an immense force for pleasure and destruction with which a God-fearing person must battle until it relented, backed down, and cowered in the corner of matrimony.
While denying bodily urges was the key to saving my virginity, it was a recipe for disaster when it came to the treatment of my asthma. I needed to breathe. I needed oxygen to careen through arteries and reach the tips of my fingers, the bottoms of my toes. Breathing enabled movement: drilling a soccer ball into the corner of the net, sweeping arms across the water with the lunge of each butterfly stroke, chasing speed in a sled down snow-covered hills and then climbing back up to do it again and again. Respiration, at its finest, was a bodily function that went unnoticed. An asthma attack was the reverse: a keen awareness of every vibration in the lungs. I could always feel the start of an attack at the top of my register. I inhaled and suddenly found that my lungs felt like a balloon enclosed in a box. I breathed in deeper and deeper, but the balloon just pushed with greater force into the tight corners. As an attack progressed, the box got smaller. Sometimes I tried to trick myself into thinking that the box was not shrinking. I would inhale very slowly—as if the duration of an in-breath was all that mattered—and tell myself it was not that bad, it was not time to go to the hospital yet, I could probably last a little longer. The better tactic, though, was always to be on the lookout for that the first constriction; it was a tightness only I could sense. If a doctor were to hold a stethoscope to my chest, my inhalations would be crystal clear. At first, the box of an asthma attack was so large that the balloon could fully expand and just barely graze the lid. It was up to me to perceive this faintest of pressures.
Early treatment sometimes meant the quick puff of an inhaler, but more often than not it called for the nebulizer. Dubbed “the machine” by my family, the nebulizer was a piece of medical equipment that created a steady stream of pressurized air. To use it, I mixed vials of drugs together in a plastic reservoir that was hooked up to the motor via green tubing. The top of the reservoir was capped off by a mask when I was young and a mouthpiece as I got older and could be trusted to steadily breathe in the opaque vapors the machine emitted. The treatments lasted only ten minutes—just until the gurgle of an empty reservoir could be heard—and left me with a nice, full breath and the shakes. All nebulizer meds quickened my pulse, but with Bronkosol my heart pounded as if I were an Olympic track sprinter who had just broken through the tape. It felt incongruous to sit on the family-room couch post-neb with my heart about to explode through my chest, but Bronkosol worked by righting one organ at the cost of another. To ensure the scales didn’t tip too far, my Bronkosol use was restricted outside of the hospital; if I couldn’t make it at least two hours between treatments, then I had no choice but to be admitted.
Many times I felt relief when I walked through the sliding glass doors of St. Elizabeth Hospital. I was ready to give up the reins of my condition and let the pulmonologists, pediatricians, and nurses take control. There was comfort in knowing that within a matter of days the rattling in my chest would disappear and I would be able to breathe once again without conscious thought. Sometimes, though, the attending physician at the ER questioned whether my asthma attack was severe enough to warrant admittance. My numbers on the peak flow meter—a device used to measure how quickly and forcefully one could exhale—were often on the high side for a chronic asthmatic. Regular swim practice that required me to hold my breath between strokes had expanded my lung capacity beyond the sick-kid range. The doctor would smirk as he eyed my peak flow number and suggest that my parents might have been jumping the gun a bit by driving me to the ER at four in the morning. I didn’t seem that bad off. He knew a whole slew of asthmatic kids who wished they could blow a 320. This was the moment when I would break. I flipped from yearning for a full breath to desperately wishing the attack would worsen, binding me so tightly that it would be impossible for him to ignore the blueness of my lips. I wanted what the McDaniel’s characters had: to be unequivocally sick. I wanted a disease that was so dramatic and horrifying that it commanded everyone’s respect and fear, even a jaded ER doc who’d seen one too many psychosomatic “emergencies” over the years. I wanted it to be impossible for anyone to question that what I felt in my body was real.
As either the sickest healthy kid or healthiest sick kid I knew, my particular strain of self-pity sometimes morphed into a case of schadenfreude, enabling me to both covet the awe-inspiring maladies McDaniel’s characters suffered and take pleasure in their pain. A part of me loved reading stories where the most beautiful and faithful were brought down from their thrones to experience frailty. There was a deliciousness in watching prom queens and football kings not get what they wanted. Yes, they had the luxury of experiencing true love, the kind of all-consuming soul-to-soul magnetism that left Ryan and me and our quick peck in the dust, but in the end the body failed them. The eventualities could not be escaped by anyone, and this warmed the coldest part of my heart. I wondered if Lurlene McDaniel felt the same way. Beneath the swirling script that looped her name across book covers—text raised so that it felt good to the touch—did Lurlene wield a spiteful sword? Did she delight in watching the chosen ones try to wriggle away from the fates she divined for them? She told fans that the diabetes diagnosis of her firstborn son was what had spurred her to write these stories. She told reporters that composing these “crying and dying” books, as some librarians called them, was therapeutic for her. I’m sure it was, though I know not to what end.
I was without a McDaniel’s book when I was admitted to Cincinnati Children’s Hospital the spring of my freshman year of high school. An asthma attack had closed in on me quick, and my pediatrician had instructed my parents to bypass our customary route to St. Elizabeth and cross the Ohio River to Children’s instead. The nurse processing my admittance paperwork clipped a pulse oximeter over my finger to measure the oxygen levels in my blood. I enjoyed how the red light that passed through my fingertip gave me an ET glow, but was disheartened when the nurse announced that my oxygen blood levels were ninety-seven percent. “Seems like you’re doing okay to me,” she said. She begrudgingly completed the paperwork and called an orderly to wheel me up to my room.
At St. Elizabeth, all the rooms in the pediatric ward were singles, but Children’s was the hospital of choice for the sickest sick kids in the tri-state region and only those in the ICU or with communicable diseases got suites all to themselves. I was delivered to a room in which the bed by the window was already occupied by a short, slight girl. I could tell immediately that she was in for something much worse than an asthma attack. My eyes ran over the skeletal outline so clearly drawn joint by joint under her skin. Rather than tucked inside layers of muscle and fat, her bones appeared embossed, pushed to the surface by the disease that inhabited her. I had no way of sensing the other means by which the disease cruelly announced itself: salty skin, greasy stool, lungs weighed down by globules of thick mucus. It had not yet wormed its way into her personality, though; she was self-possessed and spirited. Once the parents and nurses had cleared our room, Tara quickly introduced herself and kicked off our swap of medical stories. Whereas I normally visited the hospital twice a year for a couple-night stay, Tara’s cystic fibrosis forced her to take up residence at Children’s for months at a time. She had missed more than half of the school year already. For me, hospital visits were a sphere removed, opportunities for healing and basking in the warmth emitted by others people’s sympathies and the occasional get-well present. But for Tara, hospital time was ordinary time, existing in no way apart from her ongoing social, academic, and familial responsibilities. The gossip exchanged at high school lockers between the bells must still be shared via our hospital room phone. Algebra homework must still get done, broken pieces of each equation reassembled so that x could be solved for, an answer found. Parents must be allowed to voice their usual displeasures and admonitions; even their sympathies wear with time.
Respiratory therapists visited our room every couple of hours to give us nebulizer treatments, rousing us even at two and four a.m. to sit up and inhale our medicated mist, calling our names whenever they saw the mouthpieces droop between our lips, knowing our heads would soon follow. During the day, Tara received additional visits from a male nurse whose only medical instrument was his hands. “I have fluid in my lungs,” Tara explained. “So he has to beat my back and sides so that the mucus loosens and I can cough it up.” The curtain between our two beds was always drawn when the male nurse came in to do what Tara called “chest percussions.” I couldn’t see the force with which he pounded her body, but every strike made a loud popping sound. Whop, whop, whop, whop, whop came the blows, one right after the other. Not even a whimper escaped her mouth. I couldn’t fathom how her delicate frame withstood such abuse.
My dad worked off of Fountain Square in downtown Cincinnati and stopped by on his lunch break to visit me during my second day at Children’s. Tara was out of the room, and I told him with wonder about her cystic fibrosis and the strange chest percussion therapy she had to do. I was captivated by her condition, how it seemed a mutant version of the asthma I knew, both more glamorous and terrifying. “Amye, you know she probably isn’t going to live past her twenties,” my dad said. He lowered his voice, slowed his words to ensure each would land. “Cystic fibrosis is a very serious disease.”
He was trying to explain to me the meaning of the word “terminal,” the concept that illness could end with something other than a car ride home from the hospital. He was trying to say that unlike asthma—thought to eventually be outgrown—some diseases overgrew the body, their tendrils choking it and arresting the movement of breath and blood. He wanted me to understand that death could inhabit my hospital room as easily as it occupied my existential worries and McDaniel’s paperbacks.
A day or two later during morning rounds, the attending said I was nearing a full recovery and would be discharged the following day. Tara, on the other hand, must have received a different bit of news, because when the male nurse arrived to administer his first set of whops for the day, instead of hearing the steady beat of his hands on her body I just heard her saying, “No!” louder and louder through the divider. He started to remind Tara calmly about why the chest percussions were necessary, how they would help her, but this only prompted her to scream with greater force, “I don’t want to!”
With each refusal and decibel climb, another nurse bolted into our room, so many so fast that I had no idea of the number standing on the other side of the curtain. They joined together in a frantic melody, pitching their voices higher and sweeter in hopes of mollifying Tara.
None of it was working.
Another nurse shot in our room and skidded to a stop at the corner of my bed. She gave me a broad smile and settled herself next to my feet. “So, your parents tell me you swim, huh? That sounds like fun. What’s your favorite stroke?” She wanted me to play make believe that we were the only two in the room even as screams ricocheted off the walls. My mouth responded dutifully to her questions while my mind stayed focused on Tara’s cries.
I was scared for Tara in a visceral way that had never been prompted by McDaniel’s characters. There was something wholly different about listening to someone scream for her life and mean it. Part of me wanted to scream with her, scream in horror at the impending doom that could not be averted. True love, torrid sex, the heavenly kingdom—these never seemed less important. They all fell away in the presence of a desire to live. And living meant having the choice to be left alone.
Tara was unable to sustain her screaming indefinitely, and her protests grew quieter and quieter until they were eventually replaced by tender sobs. A hushed agreement was made among the nurses that Tara could skip her morning chest percussions provided that there were no such outbursts when the male nurse returned for her second treatment of the day. Tara must have silently nodded in acceptance of this offer because slowly the contingency on the other side of the curtain began to file out. The nurse beside me, who minutes before had seemed so interested in my swimming pursuits, patted my leg as if to say, “Isn’t it good that’s all over,” and left as well. Tara kept the curtain closed between our beds. She didn’t pick up the phone to call her friends or complain to her parents. When the male nurse came back hours later, Tara acquiesced and assumed the position. I could sense that she was weeping, but imagined she buried her face in a pillow to dampen the sounds. As promised, there was no scene.
Tara had learned to smother her sorrows.
The same was true of McDaniel, though she went about it in a different way.
At the end of Don’t Die, My Love, she has Luke use his final words to tell Julie of his total confidence in his creator. Time spent poring over the Good Book has put to rest his worries about the afterlife, giving him serenity going into a last-ditch surgery. His chest is about to be cracked open so doctors can remove a new tumor butting up against his heart. Neither this image nor the high-risk nature of the surgery troubles him. Rather, Luke professes to Julie that his soul, their love, will survive any outcome. “Heaven’s a real place, Julie—a beautiful place—and if I can’t wait for you at the end of an aisle on our wedding day, I’ll wait for you in heaven.”
Julie scrambles under this talk of death. “I can’t think about losing you. Don’t make me.”
Luke remains calm, thanks to his abiding faith and the sedating medications that have been injected cold into his veins. “If it’s possible to send a message from heaven, I’ll get one to you.”
Fiction makes it easy to keep promises, and McDaniel ensures Luke makes good on his. Months after the winter of his death has passed and the earth has thawed, Julie finds tulip buds poking out of the high school football field. As they inch taller and open wide, the message Luke planted back in the fall becomes apparent: I ♥ U. A message from heaven, indeed. Grief moves aside and Julie finally basks in the full certainty that Luke awaits her somewhere “on the other side of all her tomorrows.” Absent are the whops and screams of terror, gone life’s searing cruelty, its deep fathoms of unknown. Like a youth group testimonial, McDaniel’s concluding words are comprised only of slender reassurances. Together they form a hollow hope, like the sound of a cupped hand striking your back.
The Image archive is supported in part by an award from the National Endowment for the Arts.