Unemployment Assistance

My pulse kicked into overdrive when I read the subject line of a recent e-mail from a friend: “Bad News.”

I took a deep breath as I opened the message and read the lines of text. My friend had lost his job. The previous day, with no prior warning, he had been let go from a position he had occupied for the past seven years. The company was undergoing reorganization. His boss had decided to wipe the slate clean and start fresh—new younger workers with less experience could be hired for considerably less money. Needless to say, my friend was left in the lurch. He’s married, the father of a 2-year-old toddler and has a mortgage on his home.

What’s so odd about that scenario, you might ask. In these difficult economic times many folks are in the same predicament. Ordinarily, I would have to agree with you. Except in this instance, my friend is a family physician. He’s bilingual and has spent most of his career working with the poor and the indigent. He’s competent, conscientious and cares deeply about the patients he serves. So why was he let go? Although he’s asked, his questions have fallen on deaf administrative ears. Perhaps he wasn’t productive enough to pump out yet another patient with a myriad of medical problems every 12 minutes, who knows?

My friend subsequently drew up a list of the medical needs of his most complicated patients and forwarded it to the administrator of the clinic where he worked—the same administrator who had in fact let him go. My friend wanted his replacement to have the background information to be able to deliver good care to his former patients.

In the interim period, as luck would have it, my friend happened to reestablish contact with an acquaintance from years ago—a wandering sort of sage, who was practically homeless at the time. Out of the blue this fellow called up my friend to chat. When he learned that my friend had recently lost his job, this fellow offered to send him a bit of money to tide him over.

My friend was astounded at the offer. It wasn’t as if he needed the money; he has always been prudent with his finances and will do just fine in the long run. No, it was the fact that this homeless fellow had made a sincere gesture to help, even though he had little to spare for himself.

My friend wrote that he felt like the Jimmy Stewart character in “It’s A Wonderful Life”—George Bailey returns home after his Walpurgisnacht wanderings through the streets of Pottersville to be greeted by family and friends, who dig deep into their pockets to raise the funds to support him in his time of need.

I am confident that my friend will soon have another job. People with his skills, talent and experience don’t stay unemployed for long. But even the unemployed man who has the poorest of true friends is rich beyond measure.

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Father Figures

Years ago, when I worked at an inner-city clinic, many of our pediatric patients were born to single mothers. Often I would inquire about the father. Was he involved with the child? Did he offer any emotional or financial support? Sadly, many times the answer was “no” on all accounts. I distinctly remember one young mother’s response to my questions: “Why—do you think it matters?”

What a sad state of affairs when even mothers themselves feel that a paternal presence is unnecessary for adequate rearing of their children.

For me, this issue surfaced again during my recent viewing of “The Diving Bell and the Butterfly,” a French film about the life of Jean Dominique Bauby, the former editor of Elle magazine, who, at 43 years of age, suffered a massive stroke that left him paralyzed and mute. Bauby eventually learned how to communicate by selecting letters of the alphabet to spell words by blinking his eye. A victim of “locked-in syndrome,” Bauby spent the remaining year of his life in the shell of his body with only his imagination and memories.

One poignant scene takes place the week before his stroke, when Bauby visits his 93-year-old father and proceeds to give him a shave. During the interaction, the father chides the son for not visiting his three children often enough, for not being an integral part of their formative years. “Children need a father,” he says. A few lines later the father tells the son how proud he is of him. “Every son wishes to have such praise from his father,” Bauby replies.

This scene lingers in the viewer’s mind when Bauby’s father telephones him at the hospital. The old man knows he will never hear his son’s voice again, in fact will never see his son again, for he too remains a debilitated prisoner in his fourth-floor walk-up apartment, physically unable to descend the stairs. Yet the viewer senses this all-important bond between father and son. Indeed, in a recent New York Times interview, Max von Sydow, the actor who plays the role of Bauby’s father in the film, states that he had great difficulty getting rid of his emotion after making the movie—“the sorrow and the compassion were overwhelming.”

Paternity issues run deep. Witness James Joyce’s treatment of the theme in Portrait of the Artist as a Young Man or Ulysses. In the final pages of the latter work, Stephen Dedalus meets Leopold Bloom, his spiritual father, in a poignant encounter. Cyril Connolly writes: “The whole climax of Ulysses is a single moment of intimacy, when Bloom, the comic character, rescues Stephen in a drunken brawl … in an instant of spiritual paternity.”

Lately, more of my pediatric patients are brought to the office by their fathers, who seem every bit invested in their nurture and care. In the rearing of children, fathers figure. Today more than ever children need to experience the presence of a father figure in their formative years—and beyond.

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.

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.’”

A Poet Gets His Final Wish

Piergiorgio Welby, the Italian poet who suffered from muscular dystrophy for 40 years, had his final wish granted when Dr. Mario Riccio, an anesthesiologist, sedated Mr. Welby and removed the artificial life support that had been keeping him alive for the last three months.

“The case of Piergiorgio Welby is not a case of euthanasia,” Dr Riccio stated. “It’s a case of refusing treatment.” According to the doctor, such cases happen every day—quietly, without the public attention that Welby’s case had received.

The New York Times (December 22, 2006) reported that Italian law “does not allow anyone to assist in a death, even by consent. Two recent legal decisions on Mr. Welby’s case questioned the legality of a doctor detaching life support, while upholding Mr. Welby’s right to decline treatment.”

Emma Bonino, a leader in the Radical Party, of which Mr. Welby was a member, said: “Piergiorgio Welby did not invent a phenomenon. He gave a voice to a reality — voice, body, suffering — to a reality that exists, and to which it is more simple, if more cruel, to close one’s eyes.”

While I think that it’s morally wrong to willfully take the life of another human being, I don’t pretend to be able to speak for the individual patient who finds himself in that dilemma. As the Galician quadriplegic Ramón Sampedro wrote in Cartas desde el infierno (Letters from Hell): “I don’t speak for all quadriplegics. I speak for myself — Ramón Sampedro.”

As I wrote in my review of Mar Adentro (The Sea Inside): “The sea that rages deep within the soul touches upon that universal profound question of what constitutes a human life. For Ramón Sampedro the answer becomes clear. But for many viewers the answer will remain elusively hidden in the heart. Perhaps none of us can know it truly before his or her time.”

Petitioning for the Right to Die

Today’s New York Times (December 20, 2006) carried an article highlighting the cause célèbre of Piergiorgio Welby, an Italian poet, now bedridden and ventilator-dependent after suffering with muscular dystrophy for 40 years. Mr. Welby has petitioned the Italian government to allow him to end his life. “I find the idea of dying horrible,” Mr. Welby says, “but what is left to me is no longer a life.”

An Italian court has denied legal permission for a doctor to sedate Mr. Welby and remove him from his respirator. He says he is not seeking to commit suicide, but to remove himself from medical treatment he does not want. “What is natural about a body kept biologically functional with the help of artificial respirators, artificial feed, artificial hydration, artificial intestinal emptying, of death artificially postponed?” Mr. Welby has written.

“If it is done privately, there would be a way to accommodate his desire to discontinue life support as a burdensome therapy,” said Dr. Myles Sheehan, a Jesuit priest and physician at Loyola University Medical Center in Chicago. “But if it is done publicly, it’s a big mess, because of the direct link to euthanasia.” Dr. Sheehan is an expert on ethical issues surrounding euthanasia.

Welby’s book, Let Me Die, brings to mind another book, Cartas desde el infierno (Letters from Hell), written by Ramón Sampedro, a Galician quadriplegic sailor who petitioned the Spanish government to permit him to end his life. Sampedro ended up committing suicide with the help of a friend. His story is told in the motion picture Mar Adentro (The Sea Inside), which I reviewed in the Summer 2005 issue of Cell2Soul. Interested readers can access my review here.