What It Means to Still Be “There”

Watching The Diving Bell and the Butterfly, I did not expect humor to be such an important part of how I came to know Jean-Dominique Bauby. The people around him encountered a largely unresponsive patient, while we heard someone who was constantly reacting, judging, and making jokes. When someone called him a vegetable, he wondered whether he was a carrot or a pickle, turning a dehumanizing comment into a private joke. Later, I was ready to be angry for him when the phone installers mocked his inability to speak, while Bauby privately teased Henriette for taking the joke so seriously. His humor gave me a fuller sense of him than simply knowing that he remained conscious. It revealed a perspective that was distinctly his, often surprising, and never fully available to the people trying to interpret him. I thought I was empathizing with him by taking the joke seriously, but I was really imagining the response that made the most sense to me. I could correct my assumption because the film let me inside Bauby’s mind, while Henriette still had to interpret him from the outside.

I began to see a similar problem across our readings, as doctors tried to infer pain, awareness, or understanding from patients who could not confirm or challenge their assumptions. In Levinson’s study, the operating-room staff watched for some sign that their anesthetized patients could hear them and felt reassured when they saw no response. Yet when Levinson interviewed the patients under hypnosis a month later, four repeated everything the anesthetist had said and four more recalled parts of it. As with my reaction to Bauby, the interpretation that made the most sense from the outside did not necessarily match the experience within. That assumption also shaped how the staff behaved. Goleman noted that surgical teams often felt free to joke or make disparaging comments once a patient was “asleep,” even though patients might still register what was said. Bauby happened to find the joke made around him funny, but his stillness could just as easily have concealed anger or humiliation.

Henriette showed me what good care can look like without perfect understanding. Although she sometimes misread Bauby, she continued to treat him as someone who could speak for himself. She stopped the telephone installers from talking about him as though he were absent and developed the alphabet system he used to answer through blinking. Through that system, Bauby could finally show the people around him that his stillness concealed a rich inner life. In Jahi McMath’s case, however, the meaning of her movements remained unresolved. Her mother saw Jahi’s warmth, heartbeat, and occasional movements as signs that her daughter was still present, while her doctors understood those movements as reflexes that could continue after the brain had stopped functioning. Reading about Jahi made me realize that a medical definition of death can be clear on paper and still feel impossible to declare beside the patient’s bed.

Together, these cases made me think differently about what it means for someone to still be “there.” It was one thing to learn that Bauby could still hear and understand what was happening, and another to hear his jokes and realize that he was still making sense of it all in his own way. After seeing how much Bauby’s body had concealed, I wondered whether there was still a Jahi on the inside, experiencing something her body could no longer communicate. This may be what makes consciousness so difficult to pin down, as other people can observe the body, but only the person inside it can experience what it means to still be there.