On Friday, December 8th, 1995, Jean-Dominique Bauby, the 43-year-old French editor of the fashion magazine Elle, suffered a major stroke. He was behind the wheel of his BMW after picking up his son, and suddenly felt as though he were “functioning in slow motion.” His vision blurred and he broke out in a cold sweat. He barely managed to get himself and his son to the home of his sister-in-law, a nurse, who promptly took him to the hospital. At this point, Bauby could not speak or move his body. He slipped into a coma and woke up twenty days later to find that he was completely paralyzed except for his left eyelid. He could hear, see, and feel but could not move or speak — a condition known as locked-in syndrome.

Bauby’s once vigorous and ambitious life was reduced to a hospital bed in a rehabilitation facility at Berck-sur-Mer in northern France. Despite this fate, Bauby managed to “write” a book using eye blinking,

The Diving Bell and the Butterfly (1997; adapted for the screen in 2007). His assistant slowly listed the letters of the alphabet and Bauby blinked his left eye to indicate the letter of choice. And so he wrote the book, letter by letter. Two days after its publication, Bauby died of pneumonia.

The French editor experienced a rare stroke in a relatively small area of the brain. In most cases a stroke, or death of brain tissue, is due to the blockage of an artery (ischemic stroke), but strokes can also be due to bleeding (hemorrhagic stroke). In Bauby’s case, a clot likely wedged itself into the basilar artery, a vessel supplying blood to the cerebellum and brainstem. This caused an ischemic stroke in an area of the brainstem called the pons. Because the brainstem connects the spinal cord to the brain, all of the motor fibers from the body converge here as they move up into the cortex. Given the relatively small size of the brainstem, it is unfortunately possible to knock out nearly all of these motor tracts, leading to Bauby’s clinical presentation.

I thought about the book and its author after encountering a patient experiencing a similar tragedy. Like the French editor, she was relatively young. She was a writer, too. She had collapsed in a supermarket and opened her eyes to the cold and dark reality of complete paralysis, relying on a ventilator to help her breathe. I saw her every morning for two weeks. I listened to her heart and lungs or drew her blood. When she opened her right eye on a regular basis, we asked our speech pathologists to help her communicate. They trained the patient to look up for “yes” and down for “no.”

There were days when the patient was too exhausted to participate in these exercises or when she had an infection, or seemed to decline and failed to answer or understand basic questions asked of her. Her mother sat at bedside each day conversing with her and encouraging her. In these situations we typically speak with family members about the goals of care for their loved ones. What would the patient say if she could speak? Would she want us to do everything we could to keep her alive, such as cutting a hole in the throat, a tracheostomy, so she could breathe without a breathing tube? Or would she want us to withhold surgeries? These are always difficult discussions for doctors and family members as we all attempt not only to predict what the patient would want but also to separate ourselves from what we want. The mother, however, did not hesitate — she asked us to do everything to keep her daughter alive.

What, indeed, would the patient say if we asked her? And what was she experiencing at that very moment? Fortunately, Bauby left behind a view into the world of locked-in patients. They are very much aware of the world around them even if they cannot demonstrate it. Some of this occurs within the imagination, as Bauby writes: “You can visit the woman you love, slide down beside her and stroke her still-sleeping face. You can build castles in Spain, steal the Golden Fleece, discover Atlantis, realize your childhood dreams and adult ambitions.” These fantasies can bring relief to patients:

For pleasure, I have to turn to the vivid memory of tastes and smells, an inexhaustible reservoir of sensations…. Now I cultivate the art of simmering memories. You can sit down to a meal at any hours, with no fuss or ceremony. If it’s a restaurant, no need to call ahead…. Depending on my mood, I treat myself to a dozen snails, a plate of Alsatian sausage with sauerkraut … or else I savor a simple soft-boiled egg with fingers of toast and lightly salted butter. What a banquet!

But rumination can turn to tragic thoughts as well. Bauby thinks of his ninety-two year old father who can no longer descend the staircase of the apartment building. Bauby used to shave his father; now someone needs to shave Bauby. He watches his children play and feels them embrace him without being able to respond.

Such helplessness leaves one vulnerable to the outside world, too. An ophthalmologist examines Bauby without his consent — Bauby cannot tell this physician to stop. He is aroused by the terrifying sight of a doctor standing over him while sewing up his non-functional eye. After all, when a patient lies in bed without speaking, it can be tempting to see him or her as a specimen rather than as a human.

What is most disturbing, though, is the way life seems to march on without Bauby. He writes,

I am fading away. Slowly but surely. Like the sailor who watches the home shore gradually disappear, I watch my past recede. My old life still burns within me, but more and more of it is reduced to the ashes of memory.

When doctors bring him to Paris for more specialized examinations, Bauby notices the building where he used to work and people he used to know, all engrossed in the day-to-day business of life, while he is seemingly frozen in time: “The treetops foaming like surf against glass building fronts, wisps of cloud in the sky. Nothing was missing, except me. I was elsewhere.”

Jean-Dominique Bauby’s book is tremendous and beautiful not simply because his story and words are so affecting. It gives voice to the patients we are often tempted to brush off — there is a person within the heavy immobile flesh. And if there is a book inside the mind of one, of course there are books inside the minds of others. (However, as I’ve pointed out elsewhere, great accomplishments are unnecessary to demonstrate the value of a human life.)

Thankfully, locked-in syndrome is not a death sentence; nor is it necessarily a fate worse than death. Patients can recover after such a devastating injury. The Guardian published a story in 2012 about a patient who regained most of his motor function after being locked in. A 1995 study of 11 patients with locked-in syndrome found that all of the patients regained enough control of fingers or toes to use a digital switch. In a 2003 study, authors concluded that five- and ten-year survival rates for patients with stable locked-in syndrome were 83% and 83% respectively (that number dropped to 40% at twenty years). Of the patients in the study, only one wanted to die, but seven of them never even considered euthanasia, while six did but rejected it.

To become locked-in is not the end. This should give us pause about withholding aggressive treatment from these patients. They are still very much with us, and with luck and modern medicine perhaps we can bring parts of their bodies back.