The Origin of Nurse Papa: A Guest Blog by David Metzger, R.N.
Trigger warning: This blog post has content that may be inappropriate for sensitive readers. David discusses pediatric cancer in a hospital setting. Please be advised.
As a pediatric oncology nurse, I am accustomed to often being the most positive person in the room. In the face of so much pain and sadness experienced by the children I care for and the anxiety and anger often experienced by their parents, it is personally helpful for me to try and discover another, more positive view. In fact, along with all the sadness, I have witnessed a great deal of happiness, joy, and even transcendence in these very same rooms. These children, some of whom are indeed dying, are also very much experiencing their lives. They are learning. They are loving. They are laughing. They are living. My goal, when I began my book Nurse Papa, was to capture and describe what I could of the rarified and impactful moments which occur within these hospital rooms – the good and the bad. What it turned into was an emotional exploration of the lives of these children and a journey into the complicated and nuanced experience of parenting to a child with cancer. It occurred to me very quickly that there was so much to be learned and cherished from these children and their families. So much to pass on to every parent out there about these experiences that, thankfully, most people do not have to live out firsthand.
But before all that, my inspiration to even begin writing Nurse Papa began with a short-lived, but very meaningful relationship with a dying boy. His name was Jason.
When Jason first came to us, he was broken and close to death. From the perspective of the nursing and medical team, there was little pretense of a cure or significant life extension. I can’t say if this reality was fully understood by Jason or his family, but such acceptance often lags behind the knowing experience of caregivers who have seen it many times before.
Jason had been expecting to receive a new liver to replace his failing one. Before this could happen, his surgeons discovered a giant tumor. It was wrapped around Jason’s liver and intestines like an octopus clinging to a coral reef. It was inoperable. This, of course, made Jason ineligible for the expected transplant. The tumor would kill him before his dysfunctional liver would.
Meeting Jason for the first time was like walking into a cinematic memory. He was a teenager, but his appearance reminded me of the extraterrestrial from the movie E.T. His body was a study in contrasts. His torso was so cachectic from poor nutrition that his ribs pushed against his skin like steps leading up to a hugely distended belly. His arms and legs were long and lanky like those of an awkward adolescent, but atrophic and knobby at the joints like those typically found on an old man. When he tried to stand up, his body swayed side to side, and his limbs wobbled like bamboo stalks in the wind.
Jason’s skin was pale yellow and marked by bruises on his arms where peripheral IVs had been placed, lost, and placed again. His hair, ruffled and unkempt, was reddish-brown. It stood on top of a pale and slightly pocked face that was dominated by thick eyeglasses resting upon a sharp and narrow nose. He often squinted myopically through the lenses at his slender fingered hands, contemplating his fingernails, which were unexpectedly long.
Listen to David read “That Kid Look”, the touching first chapter of his book Nurse Papa: 16 Meditations on Parenthood from a Pediatric Oncology Nurse.
At times, Jason’s room seemed more like a setting for a family reunion than a hospital room. There was a rotating cast of aunts and uncles milling about above a troop of young, cow-licked cousins playing among themselves on the floor. I sometimes needed to strategically weave through a few relatives to get to Jason. Despite the noisy chaos of his family, Jason did not interact much except to occasionally ask for something he needed or to whisper some soft, secret words in his dad’s ear. When the effort of speech was too much for him, he would slowly raise a shaky arm, tethered by IV lines. It was a gesture meant to silence the room enough to allow him an audience. His family, loud and boisterous, quickly hushed as we all awaited direction to assist him. More often than not, Jason’s hand returned to earth with no clear message delivered other than his obvious frustration.
When Jason first spoke directly to me, I couldn’t make out his words. His muffled voice came out in a nearly indiscernible whisper from a set of pale, chapped lips, as if some invisible hand
was pulling the words back down his throat. In order to understand what he was saying, I had to place my ear very close to his face. In this very intimate position, I could feel his irregular breaths on my cheek and see his heart beating softly on the surface of his chest. “Where’s my dad?” he asked again after clearing his throat, and this time I understood him.
Jason’s dad—a small man with buzzed hair and a receding hairline—had sad, squinty eyes that did not match the ever-present grin on his face. He had stepped out to get something from the nearby van he had been sleeping in. Normally, though, he was a fixture in Jason’s room. He was constantly joking around with his son, affectionately touching him, and engaging with him in a goofy way. Although his encouraging quips were often strange and slightly inappropriate, he seemed to be the perfect antidote to the sometimes impenetrably somber situation Jason found himself in.
At one point, Jason’s dad admitted to me with a secretive smirk that he had been circumspectly supplying his son with medical marijuana suppositories to help ease his discomfort. “I’ll do whatever I have to do to make him feel better,” he told me.
Before having children of my own, I wondered how these sick children could face their circumstances in a way that was positive and heartening rather than just depressing. How did their parents support and nurture a process that’s end was often the death of their child? Jason’s dad and many parents like him have shown me that there is a way to reframe the pain by accepting it and finding the joy that exists in living while also dying.
I have marveled at how one mother I worked with engaged with her sick boy in a physical and playful way. Instead of reacting to her own fears and his stress, she showed him an entirely different path. Whenever her son began to cry or scream out of fear, she drew his thin body close to hers. With her face pressed lightly against his cheek, she whispered sweet words into his ear. She pulled playfully at his toes, each of which had a name, until he was once again giggling and smiling. Most likely, she was quieting her own inner turmoil too. Although he eventually passed away, the life he lived in those last few months seemed somehow so full and meaningful. It was his mother who made that possible.
I learned to use a very similar tactic of redirection with my own kids at home. When my daughter is intractably upset and writhing on the floor because I will not give her what she wants, I try to get right down on the floor with her and provide the very thing she needs—my love, my attention, and my presence. I gently tickle her ribs or her tiny feet until she can no longer suppress the giggles she is trying so hard to hold back. If more is required, I nuzzle a piggishly snorting nose upon her neck and pretend to feast on her chin until she is laughing and has forgotten that she was ever sad. This silly connection also helps me forget how annoyed I just was. It resets us both. Without altering the circumstances that were causing her pain, I helped change how she relates to it. These are the moments when I am the most successful in my role as a parent. The times when I fail miserably are when I question her existential pain altogether, when I disregard it rather than nurture and reframe it.
As his days in our care passed into weeks, even Jason’s father was unable to comfort his son. Jason’s intense, physical agony would often break through the strong medications he was receiving. Nothing was working to cool the fire within him and, lacking any other resource, Jason just began to shut down, to fully retreat within himself.
“Without altering the circumstances that were causing her pain, I helped change how she relates to it. These are the moments when I am the most successful in my role as a parent. The times when I fail miserably are when I question her existential pain altogether, when I disregard it rather than nurture and reframe it.”
In a way, Jason’s pain became his whole identity, the only face he presented to the world around him. It was difficult to know anything about him beyond the physical torment that dominated his daily existence. Just as he had no foreseeable future, it seemed to me, illogically, that he had no past as well—that he had always suffered like this. He was a body in pain, waiting to die.
Even though Jason was not the first patient I had seen suffering before death, the experience touched me in a new and uncomfortable way. My son, still incubating in his mom’s womb, was to be born a few weeks into the future. In my mind, I could not reconcile the hopeful anticipation I felt for the arrival of my new child with the grotesque pain that was Jason’s, as he prepared to leave that same world. I desperately wanted to change it, to make it alright, but it was not. That reality left me feeling impotent and useless. I thought that I was powerless to help this boy, but I was wrong. Although they influence each other, physical pain is different from existential pain. I stumbled upon a way to help Jason relate differently to his emotional distress, even though I could do little to soothe the distress in his body.
Jason had not allowed us to bathe him in many days—even the most modest exertion left him dazed and sapped of energy. Also, I imagine that something as mundane as a bath must seem so trivial when you are young and dying. After some gentle coaxing, and mostly so I would finally leave him alone, Jason agreed to let me wash him. He was so weak that it required three of us to do the job in a way that he could physically bear. Like dance partners in some sad waltz, Jason and I stood facing each other, his arms draped limply over my shoulders. He was fully naked. I held him firmly under his arms as my colleagues bathed him: scrubbing his boney back, shampooing his stringy and mussed hair. The side of Jason’s face lightly touched mine as we stood there, and again, I could hear him breathing sharp, clipped inhalations. Though we washed him quite gently, it was clear that the experience was very uncomfortable. When one of us touched him in the wrong way, his long fingernails pressed firmly into my skin. It felt as if his hands were trying to claw their way out of a deep hole. He was shivering and shaking.
When we were finally done, though, Jason glowed like a brand-new boy. His skin was scrubbed and sweet-smelling. His damp hair was now neatly parted to one side. As he lay back on a freshly made bed, he clasped both of his hands gently behind his neck in a state of gentle repose. I smiled at him. Regarding me through his thick eyeglasses, he seemed to actually see me for the first time, and a faint smile, which I had never seen before, rested on his pale face. He shifted his gaze to the ceiling and took in a deep, cleansing breath. At that moment, Jason looked more like a relaxed sunbather on a balmy beach than a dying boy in a hospital bed.
While bathing Jason, it had not been my intention to do much more than clean his body. I was not trying to fix him. I knew that was not possible. In the five short minutes, it took us to bathe him, I was completely present with Jason. I saw him in a whole new way, and I believe he saw me from an altered vantage too. Similar to my perfectly healthy children at home who often feel that their entire world is tumbling down, the understanding presence of a caring human was what Jason needed then. It did not fix him, but I think it fed his soul.
“While bathing Jason, it had not been my intention to do much more than clean his body. I was not trying to fix him. I knew that was not possible. In the five short minutes, it took us to bathe him, I was completely present with Jason. I saw him in a whole new way, and I believe he saw me from an altered vantage too.”
Later that day, it was just him and me, alone in his room—a rare moment when his loving yet somewhat dysfunctional family had stepped out for their own self-care: cannabis, cigarettes, and cafeteria food (or some combination thereof). A late-summer afternoon sun tried in vain to invade the room with its soft orange light, but it was foiled by the heavy shades on the windows. The room felt womb-like—a cave for two people. It was so quiet I could hear the soft motor of the IV pump delivering its medication to its target—this boy. Jason was still basking in the glow of his bath, and I had thought he was sleeping when he suddenly spoke to me.
“David, do you have any pets at home?” he asked in a rough but resolute whisper that cut like a scalpel through the silence of the room. I was surprised when he used my first name.
“Yes,” I answered, “we have a cat, but she gets mostly ignored these days because we have a baby girl too.”
“We have cats too, three of them,” he said, “but we had to put one of them down. She was old and she wouldn’t eat.”
“It’s sad when that happens to someone you love,” I told him.
“Yeah, it is,” he responded, “but it is something you have to get used to if you love cats.”
I had never heard Jason put together so many words out loud, much less words that were so self-reflective and metaphorical. I can only believe that the calm and intimate moments we had experienced that afternoon had helped him find those words to share with me. It is something you have to get used to if you love cats. Those words echoed in my mind again and again as I and many others cared for Jason over the next couple of weeks.
Then, as we all expected he would, he died. Mikko, the nurse who was taking care of Jason the night he passed away, instinctively placed her hand on the head of Jason’s dad as he knelt crying beside his son. As she comforted this grieving father, tears streamed silently down her cheeks too.
You can learn more about Nurse Papa at www.nursepapathebook.com and you can listen to the very first chapter on the Nurse Papa podcast. You can purchase Nurse Papa in paperback or ebook form on Amazon and other booksellers.
