The bird of death, the bird of love

When I went to see B for the last time, his parents were in the hospital bed with him, his mother beside him, his father squeezed crossways at the foot of the bed. They were all barefoot and his father had one hand on his wife’s foot and the other on B’s foot and I could see how similar they were, these two sets of feet. Genetics alone do not a parent make but there is something about the uncanny likeness of parent and child that always catches in my throat. I felt tentative, worried about interrupting this intimacy, but his father waved me in, smiling. I had just finished my first call as a supervising resident on another floor and I was exhausted, pungent (can other people smell the post-call smell?), still roiling from the overwhelming responsibility that had abruptly been mine overnight. I was wearing one of C’s sweatshirts, several sizes too big, and an old maternity shirt, the middle deflated around my no-longer-pregnant belly, for luck. “Your first day as a senior resident and that’s what you wore?” B’s father quipped. I had to laugh. He had taken an unusual interest in me and his other providers and the workings of the hospital and as a result I had shared more than usual with him about myself and the challenges of residency.

It was to be the day of B’s death, the day his parents had decided to withdraw the care that was keeping his lungs expanding and his heart beating but doing nothing to reverse the irreversible damage to his brain. It is a cruel and unwarranted term — “withdrawal of care” — and it’s more politically correct cousin “withdrawal of support” is not much better. A better term might be “the hardest thing you’ve ever done or will ever do in your life” or “the ultimate act of putting your child’s needs before your own” or at least “releasing your child from the pain of futile interventions.” I was expecting the mood in the room to be very dark but B’s parents’ tears were intermixed with funny memories of their son, pride in B and in the family they had built together, and so much tenderness.  We took turns playing a little word game that B had liked to play. We talked about the course of his ICU stay, the milestones of hope and despair, the various providers they had interacted with along the way. We talked about their children, about my child, about parenthood. I could tell from our conversation that we might not agree if the topic shifted to politics (when they asked about my husband, instinct told me to go along with it instead of doing the whole “actually I have a wife” thing), but they were the kind of parents I aspire to be — thoughtful, generous, loving, engaged. As we talked, I held B’s hand. It was the first time I had touched him without a clinical purpose.

There is an inherent asymmetry to the relationship of doctor and patient. I touch my patient’s bodies along their entire length, examining their cavities and contours. I witness their tears, their anger, their caresses, ask them questions about their families, their diet and personal habits, their sexuality, whereas they neither touch nor see nor know almost anything about me. There is also an uncomfortable power dynamic related to knowledge, whereby I often understand the context and trajectory of their illness better than or before they do.  Try as I might to communicate the facts and my impressions, there is often an unbridgeable gap that is the product of the sheer complexity of the medical situation or the emotional context which causes patients and parents to receive information in a particular way. There is a certain trading back and forth of significance and anonymity. Sometimes I walk into the room of a patient I care deeply about, about whom I have spent a lot of time thinking and talking with other doctors, and it is clear to me that they have no idea who the hell I am (“I’ll have to call you back,” they say into their phone. “The nurse is here.” Proving that gender is still complicated here in 2013.)  I am one of the dozens of faces that are passing through their lives at a stressful time. On the flip side, sometimes I am stopped in the elevator or the hospital lobby by a parent who tells me I took care of their child on so-and-so floor and I am disturbed to realize that I have no memory of them. They are one of the dozens of patients that have passed through my life at a stressful time.

Then there is the awkward question of love, which I feel toward my patients but which cannot be spoken. I wanted to tell B’s parents how much I admired the strength of their love and care for each other in a time when guilt and blame could just as easily rule the day. I wanted to tell them how deeply I mourn for their son and for them. Holding B’s hand I wanted to whisper, “Go in peace, beautiful boy.” But instead I just said, “I have been thinking of you all” and hoped that they would somehow understand that I was feeling for them and with them, beyond the blood pressures and infusion rates and MRI findings.

The moment came when it no longer made sense for me to linger. I said goodbye and then we talked a little more and then I said goodbye again. I was halfway out the door when B’s dad called back to me “Be the best parent you can be.” I turned to him and nodded and awkwardly put my hands over my heart. There was nothing more to say.

I once heard a Zen saying: Live as if death is a bird always on your shoulder. No one likes to talk about death and certainly not the death of a child, but I think it’s bound up with love, especially parental love, in ways that people don’t acknowledge. The passionate, euphoric, desperate love of a parent for a child contains within it the terrible awareness of how much might be lost. If I were to face that loss, I would want to be able to say to myself, to my partner, to my child: I loved with my entire self, as well as I could.

B passed away a few hours later as peacefully as possible. I will probably never see his parents again but I think of them almost every day as I kiss E’s neck  and tumble with her on the bed and listen to her breathing from the door at night and try like hell to do a good job at being her parent. On one shoulder the bird of death, on the other the bird of love.