Love and Compassion

I just finished reading Paul Kalanithi's masterpiece, When Breath Becomes Air. The writing is exquisite.

A neurosurgical residency graduate who is struck by advanced cancer in his mid-thirties, he writes about his life, his studies, his work, his family and how all of these aspects tie together.

I have to take the book back to the library, but need to keep this one passage:

"As a resident, my highest ideal was not saving lives -- everyone dies eventually -- but guiding a patient or family to an understanding of death or illness. When a patient comes in with a fatal head bleed, that first conversation with a neurosurgeon may forever color how the family remembers the death, from a peaceful letting go ('Maybe it was his time') to an open sore of regret ('Those doctors didn't listen! They didn't even try to save him!') When there's no place for the scalpel, words are the surgeon's only tool.

For amid that unique suffering invoked by severe brain damage, the suffering often felt more by families than by patients, it is not merely the physicians who do not see the full significance. The families who gather around their beloved -- their beloved whose sheared heads contained battered brains -- do not usually recognize the full significance, either. They see the past, the accumulation of memories, the freshly felt love,* all represented by the body before them. I see the possible futures, the breathing machines connected through a surgical opening in the neck, the pasty liquid dripping in through a hole in the belly, the possible long, painful, and only partial recovery -- or sometimes more likely, no return at all of the person they remember. In these moments I acted not, as I most often did, as death's enemy, but as its ambassador. I had to help those families understand that the person they knew -- the full, vital independent human -- now lived only in the past and that I needed their input to understand what sort of future he or she would want: an easy death or to be strung between bags of fluids going in, others coming out, to persist despite being unable to struggle."

*I would add "their hopes for the future."

A little more than five months ago, I was part of what is a hospital chaplain's worst fear: A Pediatric Level One Trauma. A child the same age as my granddaughter had suffered a febrile seizure while taking a bath. By the time her father found her, her face was under the water and her brain had been deprived of oxygen for several minutes.

"Andrea" was put on a ventilator and the parents were told that she needed to be in a pediatric intensive care unit, so she was choppered to the children's hospital to undergo what my supervisor told me was a last hope procedure: her body temperature was deliberately lowered in the hope of reversing some of the damage to the brain.

This patient has stayed with me like few others. There is a Facebook page where 8-year-old Andrea's parents post daily updates and photographs. They report progress. Daily, they say that she is "working hard." God forgive me, I am skeptical. I so admire their hope, their determination. But sometimes we see what we need to see and these parents need to believe that the girl who went upstairs for a bath will be back with them. I see a vacant look in her eyes, but I so want to be wrong, for them to be right. One of my colleagues said, "It would have been better to have let her go." The words sound heartless; I waiver between condemning her and agreeing.

The community in which the family lives has been astonishing in their support. Fund-raisers of every possible kind have been and will be held. Dozens of meals have been prepared and shared, the neighborhood men have come together to build the first-floor home addition that is now needed. I've never been prouder to be part of this town.

Years ago I spent a weekend at a Quaker retreat center attending a program on medical ethics. One doctor spoke at length about a phenomenon that strikes the children of the Amish community not terribly far away. These children progress normally for a few years and then, without warning, begin to regress until they are once again infants, but in growing bodies. They are kept with their families, brought to all gatherings, groomed, dressed, and cared for. The doctor said, "These children are not the objects of our love and compassion. They are the source."

The Smell of Evil

Sunday's Gospel was the story of when Jesus went to visit his friend Mary and she massaged his feet with expensive, fragrant ointment. The pastor did a fine job with his sermon, getting us all to think about distinctive, beautiful aromas. He talked of what Mary had done as "the smell of love and kindness." It was a good sermon, and I smiled to myself as I remembered my experience of Friday night.

I could smell something the minute I set foot in the trauma bay. It was a terrible smell -- kind of a strange combination of the dirtiest feet in the world and, erm, poop. I expected the patient to be filthy dirty. Sometimes we'll get a homeless patient who hasn't had a bath or a change of clothes in a long time, and he'll smell pretty ripe. And that is pretty much what I expected.

But when I got up close to him, he wasn't dirty at all. He was neatly shaven and his face was clean. The clothes piled at the foot of the gurney were relatively clean. But the smell was overpowering. It was my  job to ask who I should contact to come to the hospital. He was soft-spoken and he was a bit drifty. He nearly fell asleep while giving me his girlfriend's telephone number. He seemed pleasant enough and I found myself wondering why this young man had been assaulted.

After I contacted his friend, I went out front to update the triage desk with the patient's name. The triage nurse said, "Oh, the assault patient. How's he doing?" I said that he had gone off to CAT Scan but was moving all of his body parts appropriately. Then I added, "He's kind of stinky." Everyone in the trauma bay had been aware of it. The triage nurse said, "Oh, that's the heroin. Heroin addicts have that very distinctive smell about them."

I had no idea.

The smell of love and kindness. And the smell of evil and heroin.

A Visit with Bessie

When I got to her room, there were three visitors surrounding Bessie's bed. There were cards taped to the wall, a couple of flowering plants, and a balloon or two. One of the visitors was by her side, spooning bits of vanilla ice cream into her mouth. The little blue referral card indicated that Bessie was the mom of the hospital's compliance officer.  "Oh, I didn't know you had company," I said, and promised to return later. The visitors wouldn't hear of it. "She can really use a chaplain visit today. She's been kind of down. We'll go get a cup of coffee." I protested, but they prevailed. I settled into the visitor chair.

I don't know all of this lady's details, but we had the best visit. We started with what had brought her to the hospital and, clearly, she had been through a lot. She had had to give up many things that she enjoyed due to her failing body (if I remember correctly, she was 86), but her mind was totally intact. My patient spoke of having been responsible for the Thursday night dinners at the place where she used to live, and her eyes filled with tears as she described the pleasure of planning the menu, preparing much of the food, and shopping at the dollar store for seasonable paper plates, napkins, and table decorations. This had been a big loss amidst her many losses.

Bessie shared that she and her husband had recently moved to a retirement center and they had had a major cleaning out of 39 years' worth of accumulated "stuff" before moving. And when she got settled in her new digs, it turned out that outside the apartment's front door, in the hallway, there is a little shelf and the residents like to decorate their little shelves -- some seasonally and some just whatever. And this poor lady had nothing to decorate her shelf!

She had a bazillion stitches in her scalp and discolorations bruises in many locations, and her motor coordination (or lack thereof) was such that she had eaten her apple pie with her hands because she couldn't manage the fork. What was foremost in her mind was her undecorated shelf at home. Just what would the neighbors think.

I really, really liked Bessie, and we set a goal of her getting well enough to be discharged so she could go to the dollar store and replenish her knickknacks. And when I took her hand for prayer, she apologized that it was sticky, but she just had to have that apple pie!