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."
