“You know I can’t die.” Nina spoke the words with a strained patience, as if to an old friend who should have known better. “I have a daughter. She’s three months old. You know this, God.”
Nina had a neurological disease that destroyed her optic nerves, leaving her blind. The disease was also gradually attacking her spinal cord, leaving her weak in the limbs. She struggled with a painful burning sensation throughout her body as a result of the progressive nerve damage.
“ ‘You know this, God.’ That’s what I told him.” She began to recount her dialogue with God in the middle of a routine office visit.
“How are you tolerating your pain medications?” I asked.
“Just fine, doctor.”
“Any side effects?”
“The itching, as usual.”
Then: “Can you rate your pain on a scale from zero to 10, with zero being no pain and 10 being the worst pain imaginable?” It was after this question that she began to tell me, unbidden, the story of her discourse with God.
I ask my patients to do this often: to imagine the worst pain possible and then map what they feel in relation to this lodestar of suffering. On the one hand, it’s a practical and necessary question that helps guide treatment. On the other hand, it injects a bit of metaphysics into the exam room, requiring patients to conceptualize something that is thought to exist but that cannot necessarily be seen or experienced in the present moment.
Nina’s response forced a pause in my hectic day. I stopped typing notes on my computer—that omnipresent appendage of modern medicine—and listened as she went on to tell me about escaping, in the midst of her battle with debilitating illness, from an abusive husband. About how, despite everything, she prayed to God to save her from the affliction that he knew better than to give her.
In moments like these, the gap between the tools we use to describe human experience and the reality of that experience lays itself bare. Whether that tool is a crude numerical pain scale used in the clinic or something as fundamental as language itself, our instruments for apprehending the world often fall far short of their mark. (Consider the unintended implications of the Latin root for the word pain, poena, which means “penalty” or “punishment.”) It’s in this space between the thing and the thing described that I often find myself while practicing medicine—a profession that is predicated, in culture and in practice, on obliterating (or ignoring) the fissure between reality and representation.
I don’t know if any of this was on Nina’s mind when she answered. It may well have been an impulse to resist the reductive pressures of the exam room that compelled her to share her story. But looking past me as I sat in front of her, she sounded like a person simply relieved to unburden herself of a heavy load, even if only for a moment. As she spoke, I pictured Nina facing the dual terrors of her illness and her husband: her vision already blurring, her future increasingly unclear. While we talked in an exam room designed—with its unflinching lights and gleaming instruments—to be a reliquary of detachment, Nina’s sorrow unfurled itself between us.
After she finished telling me her story, she paused and looked where she thought my eyes might be and apologized for talking for so long. I reached out and held her hand. We sat together for a few moments. Long enough to feel a sense of expansion but brief enough to register a twinge of disappointment that daily clinical practice so often skates on the surface of things. I thought about Nina’s God and her complicated love for him. In her telling, he sounded simultaneously cruel and compassionate. Whatever he was, he dissolved—however briefly—some of the accrued hardness of the world.
If we had had more time, we might have sat longer with each other. I might have asked Nina more about her God. How did she come to know him? Did she feel he had wronged her? If so, did she forgive him his sins? But her transportation van was waiting. As were my other patients. The cursor on my computer screen blinked, waiting for me to enter a pain score. I asked her the question again.
“Three,” she said.
