The Other Side of Change: Who We Become When Life Makes Other Plans

The next thing Olivia became aware of was the footsteps of her roommate, who'd burst into Olivia's room, annoyed by the incessant beeping of alarms. Olivia heard her roommate scream, "Oh my God!" The alarms continued to go off. Beep. Beep. Beep. Her roommate was now calling 911. Olivia registered all of this as if it were coming from far away. She could hear the wails of an ambulance siren. Soon, a medic was leaning over her, asking her questions. "Olivia! Olivia, can you hear me?"

When Olivia woke up, or sort of woke up—her eyes were still closed—she was lying flat in a bed and hooked up to a ventilator. The metronomic noises of hospital machines filled the air. Two people were talking. They sounded like her parents, and they sounded distressed. Do they even know I'm alive in here? Olivia thought, with sudden panic. Are they going to pull the plug? But, before she could do anything, she again drifted out of consciousness.

The next time she came to, her eyes opened. A nurse in blue scrubs was dabbing a wet sponge against Olivia's lips, while doctors talked to one another by the side of her hospital bed.

When she woke up again, a kind-looking woman she didn't know was strumming a guitar at her bedside, singing a song by Maroon 5, one of Olivia's favorite bands. When the woman finished the song, she asked Olivia if there was another one she might like to hear. Olivia heard the question, but the words passed over her like air.

And then, later, her aunt was sitting next to her, looking at her intently and holding up a board with each letter of the alphabet printed on it. What were the letters for? "Olivia," her aunt said. "Olivia, if you can understand what I am saying, please blink."

Olivia blinked.

*  *  *

Olivia had suffered a massive brain-stem stroke, which damaged the regions of her brain that control voluntary muscle movement for the entire body—except for the eyes. The stroke had left her with a condition called locked-in syndrome. Unable to voluntarily move, speak, make facial expressions, chew, or swallow, people with locked-in syndrome can mistakenly be thought to lack consciousness altogether. They do, however, retain their full cognitive abilities and personality traits; they are able to think, reason, and feel the same emotions as before. Their cardiovascular, digestive, urinary, and other autonomic systems also generally continue to function, though breathing support is often required. Some people with locked-in syndrome can make noises or vocalizations, like crying or laughing. 

The condition gained greater recognition after the publication of the memoir The Diving Bell and the Butterfly, by Jean-Dominique Bauby, a former editor in chief of the French magazine Elle. Bauby suffered a brain-stem stroke in December 1995. After being in a coma for twenty days, he awoke in a hospital to find that he was unable to initiate any muscle movement, except for the muscles controlling his left eyelid, which allowed him to blink. To help him communicate, his speech therapist would recite the letters of the alphabet, and Bauby would blink when she arrived at the correct letter. Using this method, he could slowly spell out words, letter by letter. (In other cases, like Olivia's, caregivers will slide a finger along a board that lists the letters of the alphabet, and patients blink when they arrive at the correct letter.) Bauby completed his memoir this way, spending at least three hours a day on it for two months. He wrote about what it was like to grieve the loss of basic pleasures, such as hugging his son. The memoir's title offers a metaphor: his body is the diving bell, a rigid, heavy chamber that divers use to go deep into the ocean, and his mind is the butterfly, fluttering about but trapped within. 

Locked-in syndrome is exceptionally rare; it's estimated that fewer than one thousand people in the United States currently have it. There is no cure, and, although some people are able to recover limited voluntary motor function after extensive rehabilitation, the long-term prognosis is very poor: the vast majority of patients never regain significant motor control. They continue to live with severe constraints, requiring round-the-clock care to meet their daily needs and to prevent complications that can result in death—Bauby himself died fifteen months after his diagnosis, from pneumonia. 

Olivia did not know any of this as she drifted in and out of consciousness, her mind one big jumble from the steady stream of narcotics and other medications that were being pumped into her body through an IV. She didn't know that she was being kept alive entirely by machines, or that she'd had brain surgery days earlier. Nor did she know that the hospital chaplain had informed her mother that Olivia was, per the hospital's judgment, "past the point of reasonable return." Physicians were recommending that Olivia move into a nursing facility. Her grandmother, a school psychologist, was mentally preparing the family for Olivia's death. All Olivia knew was that she had to focus on blinking so that she could communicate her needs.