It is never pleasant to watch a child die. Sydney was diagnosed with stage four neuroblastoma. An altogether rare and morbid cancer diagnosis considering her twelve years of age. I sit at her staffing tucked away at the long end of a polished oak table next to my fellow intern. I can adjust the comfortable blue office chair to rise or fall to my desired height. My body sinks slowly into the worn leather upholstery like wrapping up in a favorite winter coat.
The psychiatry resident begins, “Twelve-year-old African-American girl. Admitted for fifth chemo cycle post refractory NB. Possible stem-cell transplant candidate. Vitals within normal limits. IV morphine for pain. Hematology resident wondering if she’s depressed—”
“Well of course she’s depressed!” the attending interjects lightheartedly. “Wouldn’t you be? The girl is terminal.”
A light chorus of chuckles escapes from the table, including one from my own lips. Someone makes an underhanded comment about the medical team’s incompetence to understand basic psychology. This elicits a few more laughs. I don’t blame them for creating some levity. If we became too emotionally attached to these patients, well, I fear no one would be back to work in a week. Still, the laughter is incongruent—like wearing socks that don’t match, or drinking cold chai.
“They’re asking for a psych consult to see if there is anything they should be concerned about.”
“Does she know she’s terminal?” someone asks.
“No, not yet. They haven’t broached it with the parents.”
The attending turns to me. “You have time to swing over to the hospital and do a diagnostic, right?”
I nod my head. “No problem.”
I gather my yellow note pad and begin the long walk to the children’s hospital. It is interesting, the thoughts that accompany solitary journeys down long corridors. Is her skin smooth and soft, or rough and discolored? Does she have any hair left? Will her mother be crying over her while she sleeps? All of these questions, of course, seem to serve as armor for the statement that keeps trying to force its way onto my lips. This girl is going to die. My god. She is going to die.
There is a fear that envelops my body as I ride the elevator to the 4th floor of the hematology-oncology wing. I want to make a beeline to the bathroom, fake the stomach flu, and get reprieved of my duties. Or maybe I can plead ignorance. Return to my office and say I was handed the wrong room number. Instead, I walk from the elevator into the nurses’ station and search for room 406. Her room is directly to the right. I turn left. Appearing as if I have something very important to attend to, I circle all the way around the wing until I am back to 406. I wipe my hands down with sanitizer and don the protective mask and disposable white scrubs required to curb infection. There is a moment of overwhelming anxiety before I open her door, and then suddenly, peace.
My father died two years ago. After treatment from the best doctors at The University of Iowa Medical Center and a subsequent autopsy, the cause of death could only be described as an unknown immunological disorder. I spent the better half of three months driving from Chicago to Iowa and back in a desperate attempt to fulfill my roles as a graduate student and a son. During the last month of his illness, when he was regulated to the intensive care unit, I would drive through the night to be with him in the morning. It is interesting, the thoughts that accompany solitary journeys down dark highways. All of them, of course, seemed to serve as armor for the statement that kept trying to force its way onto my lips.
When I would park my car in the structure at the hospital, I would become overwhelmed with fear. Then I would walk into his room. His body was emaciated and frail. That once meticulous hair, parted and gleaning of coconut oil, had become disheveled. He progressively became attached to more tubing and rendered into a human plumbing experiment. But this all somehow calmed me. An innate biological mechanism slowed my heart rate, shallowed my breathing, and left me with a pulsating diffuse glow.
I was not there the moment he died. I was driving to Iowa City and had stopped at an incredibly inconvenient sandwich shop right outside the Chicago city limits. I never stop when I drive home. My mother called me with the news. I heard what I had prepared myself to hear, finished my sandwich, and got back on the highway.
I walk into 406. The lights are dim. The curtains are closed, fettering a dull grayish illumination into the room. This room is enormous. There is a fine line between space that whispers freedom and comfort, and space that screams isolation. Sydney is partially asleep, curled and tucked under blankets which remind me of the towels in a bad hotel. She startles a bit as I come in the door, rights herself in the bed, and pierces me with eyes I have seen before. Her mother sits in a chair next to her reading a massive book. I can’t see the title. It is apparent, however, that she hasn’t made it past the first ten pages. I can feel Sydney’s gaze on me.
My father was born in Hyderabad, India. He was nine years old when the Razakar militia and Indian Army butchered the state. Ten years old when his own father died. Twelve years old when his mother, aunt, and five siblings were taken in and housed by the local university. I was nineteen when I realized I grew up with a man I actively chose to know nothing about. In my self-absorbed epiphany, I would pepper him with questions, craving details of India during partition and his subsequent exodus to the United States. Gentle and meek, he would respond with general truisms: “We had to stay strong” or “We had to look out for each other.” It did little to satisfy my curiosity. I asked him once how he was able to make meaning of his experience after all he’d been through, how he was able to find happiness. He looked at me with those eyes, those very same eyes, and said, “You survive.”
Sydney’s mother hands me a warm smile. Her body shifts in the chair as she closes her tome.
“Hi,” I say. “I’m from psychiatry. I wanted to check in on Sydney…see how you both were holding up.” Sydney’s glare softens. I turn to her. “You think it would be ok if I talked with your mom for a little bit, then maybe come back here and ask you a few questions?”
I take Sydney’s mother to a family consultation room on the wing. These small rooms are very calming with warm glowing lights, a comfortable couch, and some indeterminate plant growing on a coffee table. I go through my standardized assessment: No suicidal ideation. No auditory or visual hallucinations. No symptoms of anxiety. In the meantime, Sydney’s mother sits stoically, compliantly answering my questions, and giving details of her family history and her child’s illness. I put my pen down, turn my head up, and for the first time, look directly into her eyes. There is a pause of silence. It maybe lasts three seconds. Within that moment, I feel the gravity of the earth suck my insides down to the floor. My lungs drop to the tips of my toes, making even the thought of breath a sheer impossibility. Sydney’s mother begins to sob. Sydney’s mother begins to weep.
“She’s going to die,” she repeats over and over. “My god, she’s going to die”.
I am unable to relate the next ten minutes, not so much because I do not recall, but because it would seem quite inadequate. I can say that neither of us spoke. And I can say that it was imbued with the sacred.
I escort Sydney’s mother outside the family consultation room.
“I’m feeling a little weak” she says. “Will you let Sydney know I’m just going to get a cup of coffee while you talk to her?”
I nod my head and start back toward 406. I wipe my hands down with sanitizer and begin to slip on the protective mask and white scrubs. The soft, thin, fibrous fabric forces an image into my head. In my father’s last week, he was unable to move from his bed to shower or use the toilet. When he was lucid enough, we would wash his hair with an elastic cap made of the same soft, thin, fibrous material. My mother and I would put a dollop of shampoo in and put it over his head. We’d use a syringe to squirt a half-cup of water underneath the seal, and then massage him. His face would grow docile, he would hum “Om Jai Jagdish Hare,” and then he would disappear. That touch was so powerful, we would wash his hair five times a day.
I open the door to 406. Sydney hasn’t moved.
“Hi Sydney. How are you doing today?”
“Just had a chance to talk to your mom. She’s going to get some coffee right now. Sounds like things have been pretty difficult for you lately.”
I sit down next to her in the big leather chair beside the bed. The gray light from the curtains hits her face. I see her for the first time. Sydney has smooth, dark, almost blue-black skin, but her arms are ashy and riddled with tiny swollen needle bruises and tape residue. Her lips are cracked and peeled. She smacks them occasionally, and I see bits of skin stick to each other and yank away. Her hair is a patchwork of little tufts sprouting from her head like moss on a bald rock.
“What has it been like for you here in the hospital?”
Sydney stares at the wall. “It’s OK.”
I stop my ridiculous line of questions and sit in silence. She sticks the toes of her feet out from under the blanket. They’re covered in the compression socks used to prevent blood clots. I place my hand on her foot.
“How’s your mom?” I say softly.
Sydney’s face contorts. Her eyes clamp together. The shaking begins in her toes, travels up past her knee, into her stomach, through her chest, and stays for a moment quivering on the tip of her lips. Then, Sydney begins to sob. Sydney begins to weep.
Through a whimper, the words escape, “I have to stay strong for mommy…”
The diffuse glow returns. My heart rate drops, my breathing shallows. I squeeze her foot as tears push through her eyelids. We sit for a minute until the worst subsides.
“I had to stay strong for my daddy, once,” I say. For the first time, Sydney turns and looks directly into my eyes. “But I couldn’t be strong alone. My daddy and I, we had to do it together.”
She takes a moment in my eyes, nods her head, and turns away.
“I’m tired.” She sighs. “I’m so tired.”
Sydney presses the button on her bedside controller, moving her head back to the desired height. Her body sinks slowly into the soft sheets like she’s wrapping up in her favorite winter coat.
IMAGE CREDIT: wan mohd / Flickr Creative Commons