An excerpt from Mirrors and Windows: Reflections on the Journey in Serious Illness Practice.
I’m sitting next to Tony in the surgical intensive care unit doing my best to make out what he’s writing. He’s intubated and I’ve just asked him, “what’s the hardest part of all this?”
He writes out, “I just don’t understand why I’m not getting better.”
This is my first meeting with Tony. There’s a good reason he can’t understand why he isn’t getting better. He’s twenty-four years old. He has terminal cancer. Despite all the best treatment the tumor continues to grow. This is simply not supposed to happen to someone so young. Of course, he doesn’t understand.
I pause after reading his words. At this point I’ve been a palliative care clinical social worker twenty years. You’d think the most therapeutic words would just roll off my tongue. Instead, I’m struck by sadness. I take a brief moment to gather myself.
“Tony, I don’t understand either. I wish we knew why.”
Two months after meeting Tony, our team is invited into his room during a dressing change. I’m not prepared for what I see. His tumor has continued to grow leading to a sizable wound. He’s being physically disfigured by his cancer. Edges of his skin are eroding.
I feel horrified by what the cancer is doing to him. I’m also feeling overwhelmed and completely heartbroken mustering every ounce of my training and experience to avoid revealing to Tony my reaction to his appearance.
While driving home Tony’s wound keeps flashing in my mind. I arrive home, walk through the front door, and am greeted by my family: My wife Tessa and two daughters, Sage and Nico, ages thirteen and ten. Nico, my ten-year-old, immediately starts telling me about the art project she completed. As she’s talking, I can tell I’m not present. I’ve missed half of what she’s said. I’ve had this experience before after certain intense days at the hospital where the transition from horror and heartbreak to kid’s art projects is especially jarring. I haven’t left the image of Tony behind. He’s here. In my living room. I do my best to listen to what Nico’s saying but I’m somewhere else.
I’ve developed a practice for moments like these. I tell my family I need a moment to get out of my work clothes and get dressed. During this time, I practice grounding techniques I’ve learned in my personal therapy to become present. After getting dressed I practice the techniques and shift my focus to being a dad and husband through the evening.
In our next visit we arrive again during Tony’s dressing change. This time it’s Tony’s mother performing the dressing change. I watch as she patiently and consistently places one piece of white gauze after another into Tony’s wound. There’s a calm about his mother’s demeanor. She’s being so gentle and loving in tending to him. It’s truly beautiful to witness this act of motherhood. Suddenly I’m feeling awe in the presence of Tony’s mother’s love and there’s a shift in my mood from tension to peace.
I arrive home that evening. I walk through the front door. It’s quiet. I stop to notice the stillness in the living room.
I knock on my daughter Sage’s door, and she says, “Come in.”
I lay down on her bed next to her desk where she’s playing Minecraft on her computer. I watch as the flickering light from the computer screen dances across her freckled cheeks. She glances over at me finally noticing that I’m watching her. Our eyes meet.
“Hey daddy, how was your day?”
I notice time standing still. I’m overcome by this sensation of profound love and gratitude for Sage and this moment with her.
I respond, “Actually, today was a really good day.”
She replies, “I’m so happy to hear that.”
My visit with Tony today has me fiercely present with my daughter, savoring this moment and drinking it all in. It also has me realizing the love in Tony’s family being present no matter what the cancer brings. And it’s got me feeling the kind of love that will carry my family and I through whatever this life brings through our door.
Vickie Leff is a palliative social worker and an adjunct instructor, UNC School of Social Work, Chapel Hill, NC. She has worked in the field of medicine for over 35 years, specializing in oncology, palliative, and hospice settings, and can be reached at Serious Illness Conversations. She recently held the position of executive director, Advanced Palliative and Hospice Social Work Certification organization, as well as serving as the interim executive director, Social Work Hospice & Palliative Care Network. She is one of the four editors of the book, Mirrors and Windows: Reflections on the Journey in Serious Illness Practice, and serves as a palliative care education consultant on topics such as provider wellness debriefings, teams, and sustainability.