Documenting the final moments between critically ill children and their families helped me come to terms with my cancer diagnosis.
Ms. Catlin is a writer and photographer.
A nurse hands me a sterile blue gown, a mask and thin covers for my shoes. I coat my hands in sanitizer, feeling the stick of the liquid on my camera’s dials. I scan the space, my eyes noting the woman on the operating table, and make a quick calculation of where the light hits each corner, which parts of the room are too dark to photograph.
I volunteer about three times a month with Soulumination, a nonprofit organization that provides free photo sessions for terminal adults and families with critically ill children in hospitals around Washington State. The photo shoots can document individuals at any stage of illness, but sometimes we are asked to document the end of a child’s life. When I enter a hospital room as a photographer, I stand ready to pay attention, ready to capture the way that love honors the dying. Witnessing these small moments helps me come to terms with my own mortality.
In October, after three years of unexplained headaches, fatigue and worsening memory loss, I persuaded a doctor to order an exploratory M.R.I., which revealed a mass in my right parietal lobe. Three months later, following a craniotomy to remove the golf-ball-size tumor, I sat on crinkled paper on an exam table and waited to hear the pathology results.
My parents, who had flown across the country, waited with me. I watched as my mom’s leg shook in the seat and my dad took his glasses on and off. I kept waiting for them to grab hands, but they didn’t. Eventually, the doctor entered the room with the news that the tumor was not benign as expected, but malignant.
My story took a turn — the plans I had to become a social worker or a photojournalist were replaced with a list of treatments for grade 3 anaplastic astrocytoma brain cancer: six weeks of daily radiation, six months to a year of chemo, possibly another craniotomy. Within a month, the hair on the right side of my head fell out, leaving a bald spot next to my c-shaped scar. I’m 27. The type of cancer I have is incurable.
The fact that I am sick and young has helped me form new connections with the people I am photographing. During a session with a teenager who would be stopping cancer treatment soon, I offered to take my hat off if she took off hers: We’d be bald together.
In the operating room with a woman in labor, a floor above where I’d had surgery four months earlier, I took a test shot of the waiting plastic bassinet, lined with blue and pink striped blankets. The long labor turned into a C-section, and the mother was exhausted. Her head rested on the operating table, a blue plastic curtain protecting her stomach from view. The infant had a congenital hernia that had prevented his lungs from developing properly. The doctors were unsure whether he’d live a few minutes, a few hours or a few days.
I stood behind the mother’s head with the camera waiting, careful not to knock over any of the medical equipment that surrounded us. Above the curtain I could see the shoulders and heads of the surgeons as they pushed down on her stomach. The mother groaned from the pressure. With one pull, they lifted a baby into the air above the curtain, slick with blood. The baby’s grandmother stood to see him and placed a hand on her heart for the split second he was visible before he was moved to the bassinet and a crowd of doctors descended upon him.
He was perfect, but he did not cry. I watched as his mouth opened and closed silently. I adjusted the dials on my camera to focus on his tiny clenched fists and his matted curly hair, letting the tubes, wires and gloved hands blur in the background.
“Let’s bring him to his mama,” the doctor said.
I was there as they lay him on his mother’s chest. There, just moments later, as his pink skin began to turn to dusk and his mouth stopped reaching for air. His arm was gentle across his mother’s face — I clicked the shutter to save this gesture. And then she wailed so deeply that I felt my own bruised grief meet me in the room.
It is a peculiar thing to step into someone’s worst day with a camera in hand. There’s no rule book for how best to navigate it. There was no one to tell me when to stay or when to step out on my first end-of-life shoot, where I hovered in a hospital room as a family said goodbye to their 3-year-old girl dying from a rare metabolic disorder.
Often, I am asked why I choose to photograph the end of a child’s life. When I am in those rooms, I am present with the sole goal of finding the moments within grief that feel the most gentle and human: Watching a mother brush the hair of her dying child, I was able to recognize the love and tenderness that accompanies us even in death. Listening to a child cry over the loss of his sister, and then get back up and start playing again next to her body, reminded me of the resilience we all carry with us, that my family and friends are capable of as well. They will also continue to live on if I die too soon.
Those who have traveled to that pitch-black room of grief, into the depths of it, know well how in our most horrific of moments we are met with small pricks of bright light, piercing and strong. I carry my points of light with me every day — the I.C.U. nurse who helped me take my first shower after surgery, chemo care packages that have shown up at my doorstep for each round of poison, the abundance of groceries ordered for my family in the days after my diagnosis.
Martín Prechtel says in his book “The Smell of Rain on Dust,” “Grief is praise, because it is the natural way love honors what it misses.” In facing the reality of a shortened life, I like to remind myself that grief is centered not in pain but in love.
The families I work with often don’t learn my name. I am the quiet presence in the background, stepping in only to save the image they will want to hold onto later. I have no communication with them once I leave, despite having spent hours at the bedside of their dying child. There is nothing left between me and them but the images, the precious evidence of a bright life lost but loved fiercely.
At night, editing the photos alone on my computer, I often light a candle and turn on music. I click through the set, adjusting the brightness, the cropping, pouring careful attention into each one. I save a folder with each child’s photos and send them off to the organization to be delivered to the families in the form of photo books and gifts. And then, before I shut down the computer and climb into bed, I sit for a moment, alone with the images, feeling the weight of each loss, matched only by the magnitude of each family’s love for their child.
Just as I hope someone would do for me.
Caroline Catlin (@caroline_catlin) is a writer and photographer in Seattle.
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