Locked In: What It’s Like to Be Fully Paralyzed

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.

Empathy in Medicine

“You’ll h-h-h-have to… excuse m-m-m-me. I’m a little slow because I had a stroooooke,” he told us before we explained to him what his wife’s treatment would be.
His voice was nasal and his speech deliberate as he slowly and poorly enunciated each word. He wore sweatpants and a long-sleeved shirt with a
blue and white hat pulled down over his eyes. Stubbornly refusing to stay tucked away, gray hairs peeked out the sides of his chapeau and covered
his ears. He looked to be in his seventies. His wife lay on the bed in a hospital gown, slippers still on. She wore a winter hat that
concealed a bald scalp, one of the many side effects of potent cancer medications. Her eyebrows were gone and her sinewy frame was exaggerated as cachexia set in. She needed extra rounds of chemotherapy for metastatic cancer.

Image via Flickr: Tim Hamilton (CC)

That afternoon, I ran into the husband in the hospital lobby. He had just bought food and was going to bring it back to his wife, but he was heading the
wrong way. He asked a fellow student and me (he recognized both of us) how he could get back to his wife’s room and we pointed him in the right direction.
We watched him shuffle tow
ards his wife in the cancer ward. This couple was neither wealthy nor well-educated; they were suffering and attempting to
navigate the healthcare system as well as the overwhelming size of an academic hospital. They seemed helpless together.

It’s in such moments, as in many others, when empathy wells up in medical practice. I
could clearly imagine myself or my family members in their position. Their emotions became all too familiar and upsetting to me. I wanted to do everything
in my power to help them and to fix their situation. But this strong sense of identification seemed odd given how brief my interaction with them had been.

In reality, however, such a feeling is not so unusual. Robert Louis Stevenson, the famous nineteenth-century Scottish writer, co-authored a short story called The Ebb-Tide. It is an account of three criminals who steal a ship and the deeply
troubling moral situation they subsequently encounter. When one of them falls sick, Stevenson describes the healthy comrades’ feelings:

A profound commiseration filled them, and contended with and conquered their abhorrence. The disgust attendant on so ugly a sickness magnified this
dislike; at the same time, and with more than compensating strength, shame for a sentiment so inhuman bound them the more straitly to his service; and even
the evil they knew of him swelled their solicitude, for the thought of death is always the least supportable when it draws near to the merely sensual and
selfish.

Image via Shutterstock

Given the power of this selfless commiseration shouldn’t we cultivate it in medicine? No doubt
it will help us to act altruistically even when we see the worst in patients or colleagues, thus leading to a better bedside manner and better patient
care. Jean-Jacques Rousseau, the Genevan philosopher, saw such feelings differently,
however. In

Emile, or On Education
, Rousseau points out that empathy is really an outlet for selfish passions, even if its effects can be positive. Rousseau writes that,

if the enthusiasm of an overflowing heart identifies me with my fellow-creature, if I feel, so to speak, that I will not let him suffer lest I should suffer too, I care for him because I care for myself, and the reason of the precept is found in nature herself, which inspires me with the desire for my own welfare wherever I may be.

Such cynicism about the underlying nature of empathy still has its advocates today. In the September 2014 Boston Review, Yale psychology professor Paul Bloom questions our high regard for empathy. I recommend reading his essay and his
exchange with other scholars, including Peter Singer, Sam Harris, and Leslie Jamison.
Bloom points out the dangers of unchecked empathy: “Strong inclination toward empathy comes with costs. Individuals scoring high in unmitigated communion
report asymmetrical relationships, where they support others but don’t get support themselves. They also are more prone to suffer depression and anxiety.”
And this is especially the case, Bloom points out, in the medical field in which a doctor can lose a sense of objectivity and a cool head in an emergency.
Bloom distinguishes between cognitive empathy, which is empathy tempered by rational feeling, and emotional empathy, which can be dangerous. Bloom writes
of an older relative of his in the hospital:

He values doctors who take the time to listen to him and develop an understanding of his situation; he benefits from this sort of cognitive empathy. But
emotional empathy is more complicated. He gets the most from doctors who don’t feel as he does, who are calm when he is anxious, confident when he
is uncertain. And he particularly appreciates certain virtues that have little directly to do with empathy, virtues such as competence, honesty,
professionalism, and respect.

This makes sense. I can imagine how exhausting it must be to feel so strongly about every patient. It would cause burnout and depression. But the
psychologists Lynn O’Connor and Jack Berry respond to Bloom in the
following way: “We can’t feel compassion without first feeling emotional empathy. Indeed compassion is the extension of emotional empathy by means of
cognitive processes. Only if we have the capacity to feel empathy toward loved ones can this sentiment be generalized by the imagination and extended to
strangers.” This addition to Bloom’s argument is absolutely vital. Both types of empathy are important.

Such balanced empathy keeps the physician honest. There are many times when, in a rush to complete the work of the day or under the pressure to see every patient,
physicians take their frustrations out on patients. Empathy tames our impulsivity and gives us pause. It forces us to consider the actions we
are about to take. And we can project empathy using reason and emotion. If an elderly woman is being difficult, instead of reacting with frustration and
annoyance we can step back and ask ourselves, “What if is this were my grandmother or my mother? How would I want her physician to behave?” To do this is
not easy, but it can make an immense difference in how one interacts with a patient.

Empathy may or may not spring from selfishness, and too much of one aspect of it (like too much of any emotion) can be a bad thing. But physicians do need
empathy, both the emotional empathy that we feel towards some and the cognitive empathy that we can extend toward all. In the cogs of an impersonal
medical system, it leads to the dignified treatment of a suffering patient.