You Imagine Death

Justine Payton

You imagine death the way an athlete envisions success: in preparation.

It isn’t the first time, but it’s different. This time it’s not in your control. You can’t drop the knife, leave the edge, ditch the pills.

The hospital room is covered in vinyl fish stickers, and their colorful bodies swim across the white walls with perfectly formed bubbles spiraling out of their mouths. You imagine that you will die like a fish—eyes frantic, mouth agape, body twisting.

You rehearse the details over and over again: the final breath, the pronouncement, the cloth being pulled over your head, the way the mascara still clinging to your eyelashes sizzles in the heat of cremation. The question of whether there is life after death haunts in the background. As a baptized but nonpracticing Catholic, you know you haven’t done enough to ascend. The vague version of hell from the Christian denomination your mother converted to seems a likely destination, if only because you made a habit in your high school years of rolling joints with pages from the Bible.

You close your eyes, allowing the images of death to dissipate. For now, you think, just breathe. Your mouth opens to inhale, and you feel the air rush past your dry lips to fill vulnerable lungs.

Maybe it’s moments later, maybe hours have passed—you’ve lost the ability to keep track of time—but your eyes suddenly open, triggered by the sound of the door. The harsh, fluorescent lighting of the hospital corridor tumbles into your room. The ICU night nurse, flustered and mumbling apologies, shifts a butterfly needle beneath the skin on your arm. The limb has become unrecognizable, with hues of purple, blue, and green obscuring pale skin. The previous night, a nurse from a different floor was brought in to find a new site for your IV since the original had become too inflamed. The IV is your lifeline—dripping dextrose and electrolytes into a body that is unable to take in anything else. The nurse had apparently volunteered at animal hospitals and was used to finding veins in creatures as small as guinea pigs. In the weeks that you have been sick, your veins have deteriorated to a similar size. 

She eventually finds a vein, and blood begins to flow. She leaves a few minutes later with vials in her hand, crimson red sloshing around. Your chest rises and falls with each breath, supplemented by a steady stream of oxygen flowing through plastic tubes into your nose. Nothing else moves. Just five months ago, you hiked to the summit of Mount Kilimanjaro, whitewater rafted down the Nile, climbed volcanoes in Rwanda. Now, from the neck down, your body is unresponsive.

You watch the flickering of the various numbers that verify life: heart rate, blood pressure, oxygen saturation, respiration, temperature. The sounds emanating from the machine are the only indication of time passing, a metronome of unwilled stasis. You close your eyes again, lulled by its familiar beeping.

Guillain-Barré syndrome is a rare disorder in which the body’s immune system becomes its own enemy, attacking the peripheral nervous system and causing muscle weakness at best, and paralysis or death at worst. It affects approximately one in 100,000 people in the United States each year, usually older adults.

It was mid-January of 2013 when a doctor delivered the diagnosis to you. You were twenty years old. The cause remains a mystery. Ask your mother, and she will say it was from your recent family vacation where the Zika virus—potentially associated with GBS—was present in mosquitoes. Ask the chaplains who came into your hospital room uninvited, and they will say it was the will of God. Ask the Vedic astrologer you go to for answers years later, and he will blame it on the maleficent influence of the shadow planet Rahu. Ask the doctors, and they will give a plethora of possibilities: the surgery you recently had to remove a bone spur on your toe; the infection on your foot that was treated in Rwanda; the viral meningitis you were hospitalized with just five days before the Guillain-Barré set in; the onset of Raynaud’s syndrome a few weeks prior that caused your extremities to randomly blanch and then turn blue.

No one ever asks you, but you sometimes think the sickness took root during an argument with your father in the wake of media awareness about sexual assault on college campuses. He stood firm in the opinion that a girl who drank too much was not free of responsibility. You know his response would have been different if he knew you were that girl, if he knew that your travels around the world were actually attempts to escape the memory of being raped while drunk and high; that you now stared at yourself as a stranger, slapping your face and watching with indifference as blotchy red marks blossomed across your cheeks; that you scrubbed your body raw with soap and hot water until it burned. Years later, your father will say he doesn’t remember the conversation ever happening. Whether it’s his memory or yours that is faulty, you know he would have spoken differently if he knew that while hearing his words, you became paralyzed by the awareness that you would have to continue navigating this dark secret alone. You still half-wonder whether the GBS wasn’t your body’s last-ditch effort to make the choice for you. 

Before your body succumbs to GBS, you arrive home from a county hospital in Illinois where you were treated for meningitis. Between broad-spectrum antibiotics, a botched spinal tap, a blood clot, a spinal leak, a blood patch, and a continued craving for Dilaudid, the doctors had arrived at their conclusion: viral, not bacterial, meningitis. They told you this was good news; this was meningitis you could survive. You felt no relief.

When you’re discharged five days later, your naturally full and curly hair is knotted and flat, and your face is the gray-white color of marble. The doctors send you home with a prescription for rest, Advil, and patience to allow the virus to run its course. Lying on your parents’ couch, you wonder if you will be healthy enough to make your flight to France next week. You had taken time off from college to live and work in Rwanda, traveling often to the surrounding countries, but had committed to a study-abroad program in Paris for the spring. Your best friends will be in Europe at the same time, and you have dreams of clichéd and rebellious adventures: backpacking through the French Alps, sleeping in hostels in Portugal and Spain, drinking wine in Italian vineyards, and eating fancy chocolates in Switzerland. Beneath the veneer of privileged, adolescent adventure is the pulsing need to run, to escape, to live in a state of perpetual shock and intoxication. But you’ve learned to wear a smile like a mask, obscuring the reality of a festering and malignant devastation.  

Within three hours of returning home from the hospital, an onslaught of new symptoms begins. First is the sensation of weightlessness. Your feet and lower legs begin to tingle, feeling as if they are falling through the fabric and springs of the couch. Your Grandmaman has come to stay with you since both your parents work. Panic begins to rise in your chest and constrict in your throat. You’re finding it hard to breathe.

“Something’s wrong,” you tell your mother over the phone, voice shaking. “Something’s wrong with my legs.” Your mother thinks you are having a panic attack, exhausted mentally and physically from the previous week, but you insist, “No, Mom. Please come home. Please. Something is really wrong.”

When your mother arrives, the sensations have intensified and you are struggling to breathe. Your mother still thinks it’s just exhaustion, but when she tries to help you stand, your legs collapse. You both realize, at the same time, that your legs are no longer capable of holding you. Your mother’s eyes widen and she calls 911, her voice now shaking too.

When the EMTs, a middle-aged man and woman both dressed in navy polo shirts and khakis, walk through the door, they speak to your mother as if you are not there. You watch their brows furrow with concern. They lift you onto a stretcher, place oxygen tubing around your ears and into your nose, turn on the sirens and drive off to the hospital you’d just left hours earlier. After a brief analysis the doctor declares, “Well, worst case scenario, it’s Guillain-Barré syndrome.”

Within minutes, arrangements are made for you to be transferred to a different facility—a research hospital in Chicago, straight into their pediatric neuro-intensive care unit. At twenty, you are still allowed to be cared for in the pediatric wing. You’re grateful for this, thinking pediatric nurses tend to be kinder. Before you are transported into the ambulance, a nurse sticks an IV into the soft crevice just beneath where your thumb and finger join together. You cry from the pain as they flush the tube, but they insist nothing is wrong with the site they have chosen. No one ever listens to you.

“Do you want us to bring you anything?” your mother asks, brushing her hand across your forehead.

“Some clean underwear?” you whisper, hoping the doctors and nurses won’t hear your request. You have been wearing the same underwear for five days and the cotton has grown grimy against your skin.

“You want me to bring you some clean underwear?” your mother repeats loudly, as if an increase in volume is somehow a stronger affirmation. Your Grandmaman begins to laugh, as she tends to do when someone else is the subject of embarrassment.

“Yes,” you hiss between clenched teeth. 

“Okay, honey,” your mother says, oblivious to your discomfort, “clean underwear it is.”

As a new pair of EMTs rolls you back out to a waiting ambulance, you close your eyes. These ones are young and handsome, maybe even sexy—the kind of men you would’ve danced with at parties or kissed in dark corners—and here you are: oxygen in your nose, a needle in your hand, matted hair, wearing five-day-old underwear. You don’t even bother to offer them a smile.

By the end of the first night at the new hospital, your legs are immobile from the waist down. The paralysis is advancing so rapidly that the doctor diagnoses you with GBS in order to justify starting a daily regimen of immunoglobulin IV therapy, a three-hour transfusion of a thick serum that will attempt to overcome your destructive immune system. Your father sits by your side as the doctor delivers his prognosis, and the stickered fish watch from the walls.

“Right now, you have a 10 percent chance of dying, but that percentage will increase significantly if the paralysis reaches your lungs. It will be 100 percent if it reaches your heart. We’re hoping the IVIG prevents any further paralysis.”

The words sound hollow. When the doctor leaves, your father kisses your forehead. His voice is barely audible above the machine’s beeping when he finally says, “You’ll be fine, honey.” His words feel more like a prayer than a prophecy. 

On the second day, the paralysis moves from your right hand up through your arm with accelerating speed, seemingly eager to conquer your body. The tingling from the day before has become a thousand fire ants, swarming and biting beneath your skin. You try to sleep, but the assault is relentless. At night, your father holds your left hand tightly as you feel the paralysis ascend from fingers and palm to elbow and shoulder. You are in a delirium of pain and exhaustion. 

You begin to vomit, but are unable to do anything about it. Your father sits you up, holding you steady with one hand, and the bucket beneath your mouth with the other. He murmurs words of comfort, but you can’t hear them. The sound of your heart pounding against your chest and the beeping of machines fill the space between your ears. The stickered fish float in and out of your vision and time blurs between each breath.

A sudden chill seizes you, making your teeth chatter and your limbs shake. Minutes later, you’re overheating, sweat soaking through the hospital gown. You alternate rapidly between states of extreme heat and extreme cold in what the doctors call autonomic dysfunction. Your father stays awake all night, alternately placing blankets on top of you and then removing them as you cycle through sweating and shivering. You think you see tears in his eyes. You wonder if tonight is the night you will die.

In the morning, your mother arrives to take over. You hear your father whisper to her, “Last night was the worst so far. She can’t move at all anymore.”

By the third day, visits from the night nurse to collect blood are just one of many daily entrances—a rotating door of doctors, nurses, and staff checking your vitals every hour, performing tests, listening to your lungs, teaching.

The teaching is always the worst. The attending neurologist enters with a cadre of residents who can’t pass up the opportunity to see your rare case. They are but a few years older than you, full of curiosity. The women wear makeup and the men are clean-cut. You haven’t seen yourself in a mirror for over a week, but you can imagine the knotted, greasy hair you came in with has only gotten worse. Your teeth are coated in an ambiguous substance that feels like dirty velvet, but the most you have been given is mouthwash after you vomited the night before. “Twenty-year-old female, presenting with Guillain-Barré syndrome,” one of the residents announces, reading from his clipboard. You feel sick with shame.

The attending lifts your limbs one at a time, tapping each one at the points where a reflex is supposed to show, inviting the residents to come closer to see the lack of movement. “Signs of continued paralysis are apparent, including development of incontinence in the last twenty-four hours.”

You fight back tears. Earlier that morning, the nurse had noticed the bed was wet. You hadn’t done it consciously; the urine had come out without your consent. The nurse called in a colleague and together they moved you side to side, changing the sheets and wiping down your backside with a wet cloth.

“Please try to move your arm.” It takes you a moment to realize the attending is speaking to you, and he has to repeat himself. “Please try to move your arm, so we can see.”

You try. You will your arm to move, the same way you have done throughout your entire life. Nothing happens. The limb is attached to you, but it is no longer your own. You look down at your body, covered in a blue-and-white hospital gown. You haven’t eaten for over a week, and your stomach sinks in where it once protruded. Your legs are flabby and deflated. Who does this sack of blood and bones belong to now?

“Note the completeness of the paralysis. The hope is that continued IVIG will halt and reverse this presentation.”

As the doctor and residents file out of the room, you finally allow yourself to cry. Your face becomes hot and sticky. You can’t raise a hand to stop the tears from running down your cheeks and into your ears. You cry until you feel like you’re suffocating, inhaling mucus alongside the oxygen, feeling it settle at the back of your throat. When the nurse comes in, you pretend to be asleep. You hear her approach the bed and whisper, “Oh, sweetheart,” as she uses a warm towel to wipe away the wetness from beneath your eyes.

A new set of medical staff comes into the room one day, pushing a small cart of equipment. By now, you have learned to associate new visitors with pain; the competing desires of the neurologists and infectious disease doctors at the hospital have turned your body into an object of research.

“We’re going to do a little test today,” they tell you. “To test the responsiveness of your muscles.”

You glance at your mother, who is as curious as the doctors as to the cause of your sickness. “What’s it for?” she asks, putting down her cell phone briefly to make eye contact with them. She has a new full-time job keeping everyone updated on your illness through Facebook and phone calls, as well as occasionally anointing your forehead—against your will—with holy oil.

“Since Guillain-Barré syndrome is a diagnosis based on symptoms,” they say, “this is a test to confirm it.”

Your mind is unfocused, but you know that you have already been diagnosed. You don’t understand why they need to do another test. You don’t have the energy to ask. Your mother acquiesces and watches as they begin to prepare you for an electromyography. Placing dozens of needles into the muscles of your legs, they start to send electrical shocks from the machine into your body. Your eyes fly open, as the pain sears like a piece of meat held to a fire, rippling through your tendons and muscles. The nurse who has been caring for you holds one of your hands. Your mother holds the other one.

“Shh, it’s okay,” they assure you. “You’re going to be okay.”

But you aren’t. You haven’t been okay for a long time. All you know now is pain—pain to satisfy a doctor’s curiosity, pain of being violated, pain you can’t move away from. You howl for them to stop, your head thrashing from side to side. The technicians continue the test with indifference. You stop speaking words and simply scream.

Your mother finally asks them to stop. When a mother demands it, tears in her eyes, the medical staff obey. They drop their equipment onto the cart and move to quickly extricate the needles from your legs. They never return to perform the test on your arms.

Your body heaves with sobs you can’t control. I can’t do this, you think. I am so tired. You look at the stickered fish, and hope the death of your body will be the death of yourself. 

Growing up with a loosely Christian mother and atheist father—both formerly Catholic—your understanding of death was vague and contradictory. Your mother believed in heaven and chose to ignore the possibility of hell; your father believed there was nothing after death, that it was a complete cessation of existence.

For a long time, you were unsure what you believed. You’d always been curious about religion, but never landed on a firm conviction of devotion. The questions you had about God and death seemed unanswerable, and your father’s nonbelief seemed bleak and unattractive. You faltered between ideologies, settling on a deep inquisitiveness that lent itself to ambiguity. Once you were old enough to learn on your own about the existence of other religions, you studied their books for answers. All you got were more questions.

A week after your arrival at the hospital, your gaze is once again on the multicolored fish. As you watch them swim toward an unknown destination, you imagine your death, as you have come to do every day. Your eyes become heavy. For the first time in weeks, you dream.

You are standing atop Mount Kilimanjaro, more than 19,000 feet above sea level, and everything looks different. Instead of white walls, there are blankets of clouds in every direction. The sunrise pierces through the vapor, unveiling delicate hues of pink, orange, purple, and blue. Your face is wrapped in a black balaclava, and your eyes water from the cold. You walk to the edge. Ice lies beneath the scree, vibrating with the songs of the 11,000-year-old glaciers that shift beneath your feet. Your legs thrum with the strain of exertion. Removing the balaclava from your mouth, you breathe in deeply, feeling the sharp bite of frost on warm lungs. The world expands before your eyes. A vast and shimmering horizon beckons.

Back in the hospital room, the machines continue to beep, your body continues to lay immobile, the oxygen continues to flow through your nose. But a novel thought has taken root and begins to grow: that you are, in fact, still yourself. For the first time, you sense that something in you exists beyond the functionality of your nerves and limbs. You don’t know if it is mind or spirit. You don’t know if it is biological or incorporeal. It doesn’t feel like God, but whatever it is, it is an essential version of yourself. It is an identity distinct from your physical body, an essence you can connect with at the deepest level. You feel, intuitively, that it has been there all along. You think that maybe it is there at that arbitrary line of the horizon. You think, maybe I can reach it.

You open your eyes and your body flushes warm. Tears begin to fall, silent and heavy. Your oxygen levels dip, and the nurse comes rushing into the room as the beeping escalates in volume and speed. She adjusts the amount of supplemental life flowing through your nose and asks if you are okay. You nod, and she wipes your face dry.

You stare again at the stickered fish. You see them swimming along the walls of the hospital room and consider the possibility of life. You allow yourself to consciously enter your body and mind, to feel how pain and hope collide and collapse. Images flash as a montage: purple sheets as you say no; your father placing a fairy ornament on the Christmas tree; the cold kiss of glacier winds on the summit of Kilimanjaro; the burn of vodka down your throat; your mother’s kiss on your upturned palm before you go to school; lying down in barren woods during winter’s first snowfall; the red lights of a machine in a hospital room.

You close your eyes again and inhale deeply. You feel the tears move across your face, following the contours of your cheeks and chin, touching your lips. You feel the thump of your heart in your throat. You decide you want to live. You smile.

The next morning, under the gaze of the stickered fish, your toes twitch.