Kristen dies suddenly on a Sunday night. We hear about it on Monday when her younger sister Jeannie comes in for dialysis, but Kristen doesn’t. Kristen was eight-years-old and shared a genetic defect with Jeannie. Both girls require dialysis and need kidney transplants. Transplants are costly, even with insurance, so their parents held a fundraising barbeque on a sweltering summer afternoon. Unsupervised during the festivities, Kristen drank too much fluid. Water, juice, soda, tea: the beverage is irrelevant. Too much is too much. Because her kidneys don’t work, she doesn’t urinate. Her body was flooded with excess fluid. Her heart rate sped up. Her overloaded system became exhausted and her heart stopped.
Her nephrologist, Susan, stops by the unit to see Jeannie. “I can’t believe what happened,” she says to me, throwing her hands up in disbelief. She paces the nursing station, running her fingers through her short curly brown hair.
“I know. We’re all still stunned.”
“Are you going to the funeral?” Susan asks.
“What?” I don’t anticipate this question.
“Are you going to the funeral?” she repeats. She cocks her head, her eyes wide, chin jutted forward awaiting my answer.
“No,” I reply.
“No? Why not?”
“Why would I go?”
“Why would you not go?”
I arch an eyebrow. I don’t have a good answer. I don’t know why I am not going to Kristen’s funeral.
“Why would they want us there?” I ask. “Isn’t it just a bad memory for them?”
“I don’t think so,” Susan says, looking down at the order she was writing. “I think families find it comforting.”
“She died on dialysis. We’re dialysis. I feel like I’d be a symbol of something that went wrong. That I couldn’t do enough. That maybe I’m to blame.”
Susan stops writing and meets my eyes. She is a physician deeply attached to her patients. “I don’t think that at all. Have you ever been to a patient funeral?”
“No. I’ve never thought of going.”
Her stare lasts a few seconds. She finally lets it go.
~~
The patients return for dialysis on Wednesday. By now, we’re aware that Jeannie knows about her sister. She is understandably quiet. We don’t put anyone in Kristen’s dialysis spot. The last time Kristen was in her chair, the child life specialists did an art project with her. There is still royal blue glitter in the vinyl chair creases. It will stay that way for months.
~~
Our social worker and child life specialists speak to the patients and parents, informing them of Kristen’s death and offering support. No one thinks to ask the nurses what we might need. They invent an exercise for us a few days later. Using the bulletin board at the staff end of the hallway, we are invited to write something about Kristen. Our sentiments are to be coded and anonymous for patient confidentiality. The attempt feels like a forced afterthought. I walk away, contributing nothing.
~~
“Have you ever gone to a patient’s funeral?” I ask my friend Debbie. She is also a nurse and we’ve cared for mutual patients over the course of our careers.
“Yes.”
I tell her about Kristen.
“Are you going to the funeral?” Debbie asks.
“No.”
“Why?”
“I don’t know. Why do you go?”
“Different reasons. But,” she adds, “I always need to decide if I’m going for me or if I’m going to support the family.”
~~
I don’t go to the funeral. Instead, I retreat to the barn where I ride a palomino horse named Sundrop. I get her tack ready, but I’m early for today’s trail ride so I set about mucking stalls and scrubbing buckets. The sweltering Carolina summer crushes in on me. Heat, straw, manure, and urine combine in a clump and I shovel it into the dump bucket. I couldn’t save Kristen, but I can at least scrub a bucket. I feel prickly and it’s not from the heat. I’m still licking my wounds from a badly misread romantic interest, and while convenient to blame my mood on unrequited love, it isn’t all that. The manual labor provides a welcome distraction but Susan’s question swarms at me like horse flies.
~~
I lug forty-pound water buckets from the spigot to the stalls and hoist them into the stall clips. I feel judged by Susan and I resent that. Never in the newborn intensive care unit, where I started my nursing career, was I ever made to feel that way. We had frequent deaths in the NICU. Some of my mentors went to patient funerals but they never judged my absence. I grab another bucket and dump out the stale warm water. My own family barely does funerals. Why would I go to a patient’s?
~~
The herd’s owner is a nurse who works in an adult methadone clinic. “Have you had many patients die on you?” she asks.
“Enough.” We’ve discussed patient issues before, so I don’t elaborate.
“Are you going to the funeral?”
“No, it was today.” I stare at the empty bucket in my hands. “Does this make me a bad nurse?”
“I don’t think so. I guess it’s what you’re comfortable with.” She looks at me sympathetically, and then changes the subject.
“Can you guide today? I need to ride Tomahawk and he’s not ready to lead.”
“Sure.” I’m grateful to be given the additional chore, to be caught up in the level of presence required for horseback riding. For an hour, I can focus on the horses and the trail, not love and death.
~~
After the trail ride, the horses get their grain. I wait for Sundrop to finish. When she’s done, I’ll turn her out to pasture. The sun streams through the wood slats and her rump is a golden glow. With nothing to do but wait and no tasks to focus on, my thoughts drift to Kristen. “Did I miss something, Sunny D?” I ask Sundrop. She eats her grain, ignoring me.
______
Four years later, I’m tucked into one end of a darkly polished wood pew with my youngest stepdaughter Isabel flanked on my left. Her grandfather died two weeks ago; she lost her grandmother the year before. I barely knew Bob-Bob and Nana. Parkinson’s and Alzheimer’s were firmly rooted when I entered the scene five years ago. We’re sitting in the once regal Episcopalian church where they worshiped, waiting for the funeral to begin. Discolored, rippled splotches of water damage spread out from the crown molding. Jewel tone colors drench the plaster walls while dust motes drift languidly in the sunlight streaming through the stained glass windows.
~~
During the eulogy, a sniffle escapes from Isabel. Her cheeks are flushed and moist. She is not a crier, nor am I. But at fifty years old, I have stepchildren and now seem to cry more easily. Isabel’s tears make my own well up. With a logic I can’t explain, I don’t want to cry in front of her; I don’t want to look weak or vulnerable to this little girl that I’m still getting to know. I put my arm around her and she leans into me for a fleeting moment. I rummage through my purse with my free hand. No tissues. I forgot them last year too.
~~
Lucy and Alicia, the two private duty nurses who cared for my in-laws, are at the service. It looks natural for them to be here and they seem comfortable attending a patient’s funeral. I don’t recall anything about this in nursing school. Maybe we had a class session or an hour of instruction on coping with patient deaths, but I don’t remember. I think that topic fell into the “learn as you go” category.
~~
I wasn’t always a nurse. My first career was as an art therapist and I was trained to compartmentalize: don’t socialize with clients; don’t share anything intimate; keep your personal details private; don’t make first acknowledgements if you see clients in public. In short: don’t get attached. I’m not here to be your friend. That training carried over to nursing, first as a bedside nurse, then as a nurse practitioner. While nursing colleagues are more fluid with patient boundaries, I stay resolute to my therapy training. It always felt more professional, but maybe it was a excuse to hide behind so I wouldn’t have to get too close.
~~
Lucy and Alicia join us at the country club for the post-service reception. We were here last year too after my mother-in-law’s funeral. Lucy and Alicia attended that as well.
“Thank you for coming today,” I say to them as we eat. “It means a lot.”
“Of course,” Lucy says. “He was a kind man. We wouldn’t miss it.”
Alicia pulls her purse to her belly and smiles.
“Do you have a new assignment?” I ask.
“No,” Lucy replies. “Not yet.”
Isabel scuttles between the buffet table and me. She likes the bread and fills my purse with purloined dinner rolls.
“We should be going. I need to pick up my daughter,” Alicia says, pushing back from the table.
I hug them both. I will never see them again.
“Is there still room?” Isabel has appeared with another napkin bundle in her hands.
“Yes.” She slips another roll into my purse.
~~
We bury Bob-Bob almost a year after his funeral, as we had to wait for availability at Arlington National Cemetery. He was a Navy captain and is entitled to full military honors. At Arlington, we are instructed to meet in a different location from the burial site. We drive to the designated spot in our aging green minivan.
"Oh my goodness,” my husband Scott exclaims, braking to a stop. Six majestic white horses are harnessed to a caisson - a carriage with a flag draped coffin. Dozens of uniformed honor guards stand in formation. A marching band waits alongside seven riflemen. "I thought we were going to have a bugler and a pistol. Not a full band and a firing squad,” he says.
The cemetery coordinator is waiting for us.
“You may walk or drive,” she says. “Unfortunately, the cars can’t stay here so someone will have to follow.”
Scott and the kids want to walk. So does his uncle.
“I’ll drive,” I say. “It’s your dad. It’s fine. You all need to walk.”
Scott squeezes my hand as I return to our minivan.
~~
Bob-Bob’s urn is removed from the coordinator’s car trunk and handed to a petty officer. With well-practiced precision, he places it in the waiting coffin. Another officer on a gray horse takes his position in front, barks a command, and the caisson begins the solemn procession.
I trail behind them, watching the backs of my family and thinking of all the funerals I’ve never attended. One grandfather had a ceremony six months after he died and the same was true for his wife. My other grandmother had nothing at all. In fact, I’m not sure how she got to her final resting place. We don’t seem to do funerals and no one is particularly bothered about it. My mother starts to straggle away from the group, taking pictures. My dad plods ahead. He is a retired lieutenant colonel and my parents will be buried here. Sniffling, I wipe my eyes, turn Luke Bryan off the radio and take a deep breath, grateful to be cocooned in the silent car, alone with my thoughts.
We inch along the winding asphalt roadway, framed by crimson maples and honeyed oaks. Orderly rows of identical white marble slabs line the rolling landscape. Slab after slab, they resemble dominos, upright, like soldiers at attention, lucent in the autumn light.
Tourists cluster along the roadside, taking pictures. What a sight to observe – a full military funeral. We will forever be in someone's vacation photos. But they’re focused on the horse and carriage, not the weeping middle-aged woman driving behind.
I watch Scott and my stepchildren walk beneath the dappling tree canopy. We came to our union late in our lives; I wonder how much time we will have together. We crest a final hill and approach the burial site.
White plastic chairs are set up at the graveside. A columbarium of black granite marks the outer edge of the cemetery. Arlington is situated under the flight path of Reagan National Airport. During the interment ceremony, a Southwest airliner descends as the band plays Dvorak’s New World Symphony. Isabel is next to me. My eldest stepdaughter leans her head on my husband’s shoulder. Tears well up but the October wind dries my eyes before any spill over. The gun salute cracks the air. A naval officer presents my husband with the flag, and the cemetery coordinator hands me the shell casings. It’s over.
~~
“We should have asked Lucy and Alicia,” I say to my husband later that evening.
He sighs. It’s been a long two years with his parents dying and settling the estate. “I didn’t think about that. I guess I didn’t want to bring it all up again,” he says.
I nod, fingering a brass shell casing. Would they have wanted to come? Will they be sad they missed it? Do they want to grieve him too? Maybe Susan was right, all those years ago. Maybe it would have been a comfort if they’d attended. For them, and for us.
___
I receive a call from our transplant coordinator over the holidays.
“Do you believe in Christmas miracles?” she says.
“Maybe. Why?”
“Jacob is getting a kidney.”
My heart skips a beat. “How?”
“The paired exchange came through.”
I suck in air. “When?”
“January.”
“Oh, my god. Finally.”
“Miracles do happen,” she says.
~~
A newly legal adult, Jacob has been on dialysis since infancy. I have known him for a little more than three years. He had his first transplant from his mother when he was a baby. That kidney stopped working as is sadly expected. Transplanted kidneys don’t last forever and patients usually need a second or third transplant. A rare mash up of factors has made it virtually impossible for him to receive a deceased donor kidney. None of the living donors who would like to give him a kidney are matches. He’s been waiting seven years for his second transplant.
It’s hard to be Jacob. He has limited mobility because of cerebral palsy as a baby. He is captive to our hemodialysis unit three times a week for four hours. He has had infections and catheter issues. He is out of dialysis access: all the veins that we would need to put in a dialysis catheter are clotted. He’s had four permanent accesses placed: three fistulas and one graft. The graft and two fistulas failed. We’re able to dialyze him with the remaining fistula and worry what we’ll do if it clots off as well. He is on borrowed time. Every day that he doesn’t get sick is a success.
Jacob gives everyone in the dialysis unit a Christmas card. It was his year to write the family letter. The card is a collage of him and his family on a beach. I arranged his vacation dialysis for them to be on that beach. In one picture, he’s standing between his sisters. They are holding hands, back to the camera, looking out onto the water. I wonder how he managed to get to the surf in his wheelchair or walker. Grit? Determination? His diminutive body hums with energy. Every day is a smile. He excels at school, participates where he can and has never let his disability hold him back. He is the same age as my eldest stepdaughter. They go through the college application process at the same time. They apply to the same college. His mother and I share a hometown connection. He follows my dog on social media. In short, I’ve broken some of my therapy boundary rules. He gets transplanted early in the year and is finished with dialysis. Three days a week for three and a half years in our unit, and he is gone.
~~
Jacob graduates from high school in June and because of the COVID-19 pandemic, his ceremony is not in person. His family hosts a virtual celebration and invites his medical team. Jacob specifically asks a nurse, Carol, who has taken care of him his whole life to speak. She and I are the only two on the team who join the call.
“OH! Diane! You’re here!” his mom says when she sees me. She looks surprised.
She introduces Carol and me as nurses who have taken care of Jacob. As Carol speaks about his time in dialysis, my eyes moisten. I’m ambushed. Me, with the therapist’s boundaries and Heisman stance on patient attachment, am surprised by my reaction and irritated that other team members aren’t participating. My husband walks by the computer and glances at the many faces on the screen.
“Wow. He has a lot of support,” he says.
“Yes. He does.”
~~
I don’t know what imperceptible shift happened within me between Kristen’s death and Jacob’s transplant. I used to distance myself but now I’ve joined in. Was it having children of my own, albeit stepchildren? Debbie doesn’t have children and she goes to patient funerals. Was it Bob-Bob, whose funeral I actually attended? I was invited to Kristen’s but did not go. Should Jacob pass away, the faces on his graduation celebration call will be the faces at his funeral. Thankfully, he has a second chance. But with his remaining dialysis accesses so limited, he faces an uncertain future if this transplant fails. There may not be a third chance.
___
Jacob’s transplant was almost one year ago. I have not seen him in person since he left dialysis. I run into his mother and sister one afternoon in the hospital cafeteria.
“Diane!” she shouts from across the noisy room. She is waving to me.
I’m touched that she noticed me walking by and thought to say hello. I stop and we chit-chat for a few moments. She looks happy and relaxed. Jacob is well. They are well. We don’t talk about the future. Jacob’s family wanted me at his graduation. Would they want me at his funeral? After all this time, I don’t know. But would I go? Absolutely.
