Paralysis

“I saw a great movie over the weekend.” The faces of my companions turn toward me, silent with expectation.

We are relaxing in the Jacuzzi after our morning workout in the pool. Our group has waxed and waned over the years, but all told, we’ve been swimming together for more than a decade. The oldest member, now 89, moved to Maine last year. Our youngest member just hit thirty. At 54, I’m now the grandfather of the group.

“It’s called ‘The Diving Bell and the Butterfly,’” I say. “It’s a true story about this French guy, Jean Dominique Bauby, the editor of Elle magazine, who had a massive stroke at 43 years of age.”

I’ve got their undivided attention now. Most of these fellows have logged four decades in life. They know that forty-three is young for a stroke.

“The stroke knocked out his brain stem, but left his cerebral faculties intact.”

“So the guy’s a quadriplegic, but he still can think?”

“That’s right—he can think, but he can’t talk. The only way he can communicate is by blinking his left eye. One of his therapists comes up with a scheme where she reads the letters of the alphabet to him and he blinks to select the letter he wants to make words.”

“Man, that must take forever!”

“You’d think so—but the guy actually wrote a book about his experiences in the hospital after the stroke. The movie’s based on the book.”

Once again silence descends on the group for a brief moment, then one fellow says: “I don’t know if I’d want to see that. I mean, how much can he have to say?”

“He says he’s left with only two things: his imagination and his memories.”

From their facial expressions, I can tell this spontaneous mini-review is not going over well. I feel a need to redeem myself. So I say: “Of course, the best part is that all of these beautiful women take care of him.”

“Ah, now we get to the meat of the matter,” one fellow smiles. “Sex!”

Everyone laughs. I laugh too. But what I want to say is that there is no sex in the film at all—only love-making with words. I open my mouth, then momentarily think better of it, and elect to say nothing. I’m not entirely certain they would understand.

It’s only a movie, after all.

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The Eye of the Beholder

“When I came to (from a coma) that late-January morning, the hospital ophthalmologist was leaning over me and sewing my right eyelid shut with a needle and thread, just as if he were darning a sock.”

These are the words of Jean-Dominique Bauby, painstakingly dictated letter by letter through the blinking of an eye from his hospital bed.

The horror of this scene is masterfully depicted from the perspective of the patient in the 2007 film “Le Scaphandre et le Papillon,” (“The Diving Bell and the Butterfly”), an adaptation of Bauby’s book.

At 43 years of age, Bauby suffered a massive stroke, which knocked out his brainstem, leaving him paralyzed from the mouth down, with his cerebral faculties intact. For the rest of his life he would remain a prisoner trapped within his own body—his scaphandre, a deep-sea diving suit.

Although many caretakers treat him with loving respect, the hospital ophthalmologist is not one of them. “This man—who spent his days peering into people’s pupils—was apparently unable to interpret a single look.…he was the very model of the couldn’t-care-less doctor: arrogant, brusque, sarcastic—the kind who summons his patients for 8:00 a.m., arrives at 9:00, and departs at 9:05, after giving each of them forty-five seconds of his precious time.”

It is only later that Bauby learns—from another source—that his right eye was sewn shut to preserve the integrity of the cornea. The lid was not working and needed to be sealed as a protective cover for six months—a proper medical procedure performed with no explanation given to the patient at the time.

How many of us in medical practice fail to take the time to offer our patients simple explanations for our treatments to allay their fears? The procedures we perform may well be appropriate for the patient; yet I would argue that such procedures offered without explanation do not comprise good medical care.

“To cure sometimes, to relieve often, to comfort always” needs to be our guide for compassionate care.

And what of Bauby’s ophthalmologist? “If he leaves Berck, which seems likely, who will be left for me to sneer at? I shall no longer have the solitary innocent pleasure of hearing his eternal question: ‘Do you see double?’ and replying—deep inside—‘Yes, I see two assholes, not one.’”

The Surge

The problems are three in number. Two are skin deep; the third lies deeper.

This teenager shows me the rash around her right wrist. She’s had it since Christmas, she says. Little red bumps that itch. Several are grouped into small clusters. Ringworm, the school nurse said. Better go see your doctor and have it checked out.

I turn her hand over, rotating the wrist to study the eruption, all the while conjuring up mental images of skin lesions that I have seen in the past. This rash doesn’t fit the criteria for ringworm, yet I am at a loss to explain it.

“She also needs this form filled out to exempt her from swimming class,” the mother explains, handing me a paper. “She’s sensitive to the chlorine, breaks out in rash from head to toe if she gets in the pool. It’s just like the metal allergy she’s got.”

“Metal allergy?” I ask.

“Yes, she breaks out when metal touches her skin. Belt buckles, cheap earrings and such.”

“It looks like some sort of contact dermatitis,” I muse, still studying the eruption.

The mother opens her purse and pulls out a shiny bracelet. “She got this for Christmas—from her brother,” she says.

I reach for the bracelet and run it through my fingers. “You’ve been wearing this bracelet on that wrist?” I ask.

The girl nods her head.

“Metal allergy,” I say, this time as a pronouncement, not as a question. “I’ll give you a prescription for an ointment to use.”

“Then there’s the pain in her stomach,” the mother says.

“Tell me about it,” I say to the girl.

“Not much to tell,” she says. “It hurts right here in the middle.” She points to the pit of her stomach. “Anytime I eat something, it sets it off.”

“How long does it last?”

“A couple of hours, then it goes away.”

I pose a few more questions and ask the girl to lie down on the exam table. I listen to her abdomen, feel her belly, ask her to take a deep breath while I push in with my hand.

“Any stomach problems in the family?”

“I had ulcers when I was young,” the mother says.

“I’m not convinced it’s an ulcer, but I do think she’s got some hyperacidity. I’ll prescribe a pill for you to take every morning before breakfast. Let’s see if that doesn’t help.”

I write out the prescriptions, explaining the directions as I do so. I sign the form to exempt her from swimming class. “Has she been under any duress lately?” I ask, as I hand the papers to the mother.

“Lots of stress,” the girl answers. “Mid-term exams….”

“And my son,” the mother says.

“Your son? How so?”

“He was in the Marines, over in Iraq. He came home with PTSD. He yells a lot. It bothers her—and me.”

“Is he getting some help?”

“He goes to see somebody. The state pays for some of his care. But he can’t hold a job.”

“How long has he been home?” I ask.

“Two years—” she says in a halting voice. “He came back when he was twenty-two, and he’s twenty-four years old now.” Her face turns red, her eyes well up with tears; yet she continues to smile. “I tell my daughter it’s just how things are right now with our family. This is our life now together.”

I offer her a tissue. She dabs the tears on her cheeks. For the moment, the surge has settled.

“Thank you for seeing my daughter.” The mother shakes my hand and turns to go.

This family—a mother, a daughter, a son. The problems are three in number. Two are skin deep; the third lies much deeper.