Tagged medicine and health

Pretty Girls Are Supposed to Smile

Jon Krause

“There is no one who has not smiled at least once,” writes Marianne LaFrance, a Yale University psychology professor, in her 2011 book “Lip Service: Smiles in Life, Death, Trust, Lies, Work, Memory, Sex and Politics.” Her book explores how smiling unifies us. Like breath, the smile is universal. We smile to connect, to forgive, to love. A smile is beauty, human.

But I have never smiled. Not once.

I was born with Moebius syndrome — a rare form of facial paralysis that results from damage in the womb to the sixth and seventh cranial nerves, which control the muscles of the face. I was born in Britain, on the same day in 1982 the country’s first test-tube twins were born. But while science has created medical miracles like test-tube babies, there’s little that doctors can do for someone with Moebius syndrome.

Decades later, I still cannot smile. Or frown. Or do any of the infinite subtle and not-so-subtle things with my face that I see others in the world around me doing every day.

Doctors describe people with Moebius as having a “mask-like expression.” And that is what strangers must see. A frozen face, eyes unblinking. My mouth always open, motionless, the left corner of my lips slightly lower than the right. Walking down the street, I can feel the touch of casual observers’ eyes.

A child’s very first “social smile” usually occurs six to eight weeks after birth, eagerly awaited by new parents. Because, as an infant, my face remained so expressionless, when I began laughing it took my mother a while to realize that the sound I was making was laughter. At what point, I wonder, did I begin to compensate for the absence of my smile.

I am constantly touching my own face, making it move with my hands. I like the sensation of my fingertips shifting my otherwise motionless lips. It’s something I’ve done since I was very young.

I remember, age 5, kneeling at my grandmother’s dressing table, while my grandmother, without my noticing her, watched from around the doorjamb. Very quietly, I leaned toward her mirror, my elbows pressing into the cool granite top and, with two fingers, lifted the corners of my mouth into a tiny smile — a smile I only dared to share with my reflection.

This was the beginning of my understanding that I was different.

Not until I was 16 did Granny tell me that she had been watching me that day, saying, “It broke my heart.”

Through childhood and adolescence, I continued secretly “smiling” at myself in the mirror. Seeing the appearance, however awkward, of a smile on my own face helped me feel better about the day-to-day missed connections with others — schoolmates, girls in my ballet class, or adults on queue in the supermarket — who perhaps wanted to see me smile back at them.

Not smiling is about much more than surface image, though. It takes real stamina. To swallow a mouthful of food, for example, I use a few delicately placed fingers to press my lips closed. After swallowing, I try to lower the helping hand so that it looks as though I am merely brushing a stray crumb from my mouth, hoping no one notices that I do this many, many times more than a normal person would.

Going to sleep is another challenge. Because I can’t voluntarily close my eyelids fully, I have to either hold my eyelids closed with my right forefinger and thumb until they stay shut, or lie on my back with a cotton tank top laid over my eyes in such a way that their lids are sealed. Sometimes this gets exhausting. Sometimes I shed tears, and that speeds up the process.

I try to act around my disability. To pass. The one missing gesture I can never fully compensate for, though, is smiling. My body feels the smiles my face has never shown. When I explain to new friends why I don’t — can’t — smile, they say, Wow, that must be really hard. Not really, I lie, by now I’m used to it.

Still, there are moments when I feel the smile my face cannot physically make. It might be while I’m laughing over a shared joke with a friend, or when a child passing on the street smiles up at me. It translates as instantaneous pleasure throughout my whole body — a kind of minute awakening, both within and without. For a long time I wondered whether it showed. But close friends tell me my smile does come through, that they can see my smile.

Yet, recently, an elderly man passing me at a bus stop looked me up and down, caught my eye, and said, “Pretty girls are supposed to smile.”

I was speechless. I shook my head and laughed uncomfortably, hoping he wouldn’t pursue the subject. As he walked away, I remembered a high school photographer cheerily calling “Smile!” just before the blinding white flash. “Smile,” someone says, and again I’m 5 in the mirror, or 16, cringing, trying to do something I cannot do, and waiting for the uncomfortable moment to pass.

Effy Redman, a graduate of Hunter College’s creative writing M.F.A. program, lives in Saratoga Springs, N.Y.

Read Books, Live Longer?

Bryan Thomas for The New York Times

Reading books is tied to a longer life, according to a new report.

Researchers used data on 3,635 people over 50 participating in a larger health study who had answered questions about reading.

The scientists divided the sample into three groups: those who read no books, those who read books up to three and a half hours a week, and those who read books more than three and a half hours.

The study, in Social Science & Medicine, found that book readers tended to be female, college-educated and in higher income groups. So researchers controlled for those factors as well as age, race, self-reported health, depression, employment and marital status.

Compared with those who did not read books, those who read for up to three and a half hours a week were 17 percent less likely to die over 12 years of follow-up, and those who read more than that were 23 percent less likely to die. Book readers lived an average of almost two years longer than those who did not read at all.

They found a similar association among those who read newspapers and periodicals, but it was weaker.

“People who report as little as a half-hour a day of book reading had a significant survival advantage over those who did not read,” said the senior author, Becca R. Levy, a professor of epidemiology at Yale. “And the survival advantage remained after adjusting for wealth, education, cognitive ability and many other variables.”

A Doctor on Schedule, Rarely on Time

James Yang

The minute I got on that bus, I knew I was in trouble. The driver sat at the stop just long enough to miss the green light. Then he inched along till he missed the next light and the one after that. He stopped at every stop even though not a soul was waiting.

The 20-minute trip to work stretched to a half-hour, then longer. I was late, late, late.

But this was a driver with a mission, clearly way ahead of schedule and trying to get back on track. He was very early; now I was very late. We were two people with competing, mutually exclusive agendas, and the one in the driver’s seat was bound to win.

A half-hour later, still sweating from racing the last five blocks on foot, with patients piling up in the waiting room, I became the one in the driver’s seat, with the mission and overriding agenda. Woe betide those with competing plans.

Just like that driver, I work under two mandates. One is professional: getting my passengers from point A to point B without breaking the law or killing anyone. The other one is less exalted but generally far more visible: I run according to a schedule that I ignore at my peril.

“She’s running late,” they mutter out in the waiting room. And indeed, she runs late for exactly the same reasons your bus runs late: too many slow-moving passengers lined up to board. Not enough buses or drivers. A person in a wheelchair requiring extra attention. Horrible traffic.

Not only does she often run late, but your poor driver — er, doctor — can run only so late before disaster ensues. She has obligations not only to you and your fellow passengers twitching in annoyance, but to a host of others, including the nursing and secretarial staffs and the cleaning crew at the end of the line. She can’t pull that bus in at midnight if everyone is supposed to leave by 7 p.m.

So when there is enough work to last till midnight, my agenda shifts, and not so subtly. Everyone can tell when I begin to speed. Every visit is pared down to the essentials. All optional and cosmetic issues are postponed, including most toenail problems and all paperwork. Chatting is minimized.

As a bus driver once said to me when I was foolish enough to start a conversation about his speed: “Lady, just get behind the white line and let me drive.”

Medicine is full of competing agendas. Even at the best of times, the match between the doctor’s and the patient’s is less than perfect, sometimes egregiously so. Some residents are now trained specifically in “agenda setting,” the art of successfully amalgamating all concerns.

But when it’s all about speed, an advanced skill set is required.

A patient has been waiting weeks for his appointment, anxiously rehearsing his lines. Bad luck that he showed up on a day I need him in and out in 19 minutes. He spends his first 18 unwisely, pretending everything is fine, making small talk, not quite mustering the courage to say what’s on his mind.

Then just as he is being ushered gently to the door, he pauses. “Oh, by the way …”

“Oh, by the way” is an infamous schedule buster. It means something bad: a suspicious lump, a sexually transmitted disease. Further, it is so common that an entire literature now addresses the “oh, by the way” phenomenon and how to tame it.

One favored tool is: “What else?” That question, asked by the doctor early in the visit, is intended to probe the patient’s agenda before it trumps the doctor’s.

As one set of researchers wrote: “The ‘what else?’ technique uncovers pertinent fears and anxieties up front and prevents an ‘oh, by the way, I have been having some chest pain’ from surfacing at the end of a visit.”

In other words: My agenda is to adopt your agenda, and then rework it so that I can drive on. Brutal, perhaps, but effective.

Very rarely do things work out for me the way they did for that driver who made me so late to work. Occasionally I have so much time that I can dawdle along the route.

I remember clearly the last time that happened. “How’s work?” I began. “What are you doing for exercise?” “Any hobbies?” “Your family, are they well?” I progressed rapidly through seatbelts, bike helmets, family medical history, end-of-life preferences — every single stop my bus typically has no time to make.

Every answer was “fine,” “yes,” or “I dunno.” Then the patient stood up: “Look, I have places to be. Are we done?”

We were two people with competing, mutually exclusive agendas. But that time the one in the driver’s seat lost.

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After a Stroke at Age 30, Making Our Own Luck

Giselle Potter

On our flight to Hawaii for our “babymoon” last June, Dave turned to me and asked, “Does my right eye look weird?”

It did. His pupil was asymmetrically dilated, a seeping pool of black that blocked out all of the beautiful green. He couldn’t see.

Two minutes later, Dave lost consciousness. We made an emergency landing in Fargo, N.D.

An ambulance whisked us to the Sanford Medical Center, as a team of medical personnel buzzed around him. “Does your husband smoke? Drink? Have a history of stroke in the family?”

No, no and no.

Dave — only 30 years old, a lifelong athlete, an aggravatingly healthy eater — had suffered an incredibly rare, often fatal stroke; a clot had blocked an artery to his brain, starving his neurons of critical oxygen, leaving several graveyards of dead cells in his mind.

The babymoon was to have been a much-needed rest after a bruising year of Dave’s medical residency and a huge round of edits on my latest novel.

Five months pregnant, I played many roles. Wife to Dave, my college sweetheart and hard-charging, fun-loving orthopedic surgery resident. Writer of historical fiction, sister, friend, daughter to two great parents, one of whom had just announced his candidacy for president.

Our parents would arrive in the morning, but in those first hours I was alone, and terrified. And freezing — I could not stop shivering.

I pulled out my iPod and clicked on my favorite playlist, songs Dave had introduced me to in our 12 years together.

“Helpless.”

“Comfortably Numb.”

“Knocking on Heaven’s Door.”

I tossed the iPod. My mind was a dizzying highlight reel of Dave. What was the last thing he’d said? I saw images of Dave in college, graduating from medical school, on our wedding day.

The day after Dave and I got engaged, we found three four-leaf clovers in less than five minutes. We’d never found one before, we haven’t found one since — but that day, we took it as a propitious sign.

I glued those clovers under a photo of us and wrote: May we always remember how lucky we are.

Now, years later in Fargo, some of that luck kicked in: Dave woke up.

He opened his eyes.

But the man who woke — vacant eyes, no voice, fractured mind — was not my Dave. We didn’t know if that Dave would ever return.

Once medically stable enough to travel, Dave, hooked up to wires and machines and being fed oxygen through an endotracheal tube, flew via air ambulance back to Chicago.

There we settled into the neuro-intensive care unit at his home hospital, Rush. Over the past three years he had spent more time there than at home, but now he had no idea where he was.

My days were full of holding Dave’s hands and signing paperwork, meeting doctors and nurses, tracking heart monitors, feeding him gelatinous meals and repeating every few minutes where he was and why he was there.

I’d always lamented how often Dave’s medical training took him away from me. Now, there wasn’t a moment of his day in which I was not intimately involved; I knew when he’d last been to the bathroom.

There was a packed schedule of physical, cognitive and occupational therapy. It was hard not to grow disheartened when Dave, who had excelled at Yale before going on to medical school and his first-choice surgical residency, could not think of a woman’s name beginning with the letter “A.” My name begins with the letter “A.”

May we always remember how lucky we are.

After long days, I would return to our empty apartment and I’d look at that photo with the four-leaf clovers and I’d want to hurl it across the room. Had I really needed to revel in my good luck, gloating before the gods, daring them to rob me of my fortune?

I had always prided myself on having it more or less together, but this was beyond me; I learned to ask for help, and to keep putting one foot in front of the other, even when the path before us was littered with fear and unknowns.

When you’re swimming in the ocean, there’s always that one scary moment when you have to confront the white, roaring wall of breaking water. I swam directly at the breaking line of my fear, anger, sadness and loss.

I hugged Dave tighter in the middle of the night.

There was laughter, too, as Dave healed. There were so many loved ones who showed up for us. There was celebrating, like the day when Dave officially emerged from the state of amnesia and remembered we were having a baby girl.

When she arrived, Dave was beside me in the delivery room — he counted me through contractions. I studied his face the moment he held our pink, healthy little girl. He was immediately and irrevocably in love with his daughter.

I’m tired a lot these days. I’m tired from having a new baby, from the early feedings and the mental and emotional attention that is required of new moms. I’m tired from the work of writing and launching a new book. I’m tired from being a caregiver — lying awake at night worrying about Dave’s recovery, wondering when the plateau will come, wrestling the many unknowns that lurk in our family’s future.

We are fighting hard not just to reclaim the memories of the past, but to reclaim our present. Our right to our future.

I’ll always bear the scars from that plane ride, the Fargo intensive care unit, the Chicago hospitals and the long days of rehab. I’ll never again look into Dave’s soft green eyes without making sure his pupil is not dilated.

May we always remember how lucky we are.

I can finally stare at that photo again without wanting to hurl it across the room.

We aren’t lucky because life is easy or smooth, or because it makes sense or because we are in control. We are lucky because life is fragile and entirely out of our control, but it is ours to live.

Allison Pataki is the author, most recently, of “Sisi: Empress on Her Own.”

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Bad News Delivered Badly

Susan Gubar

Susan Gubar Vivienne Flesher

My friend Dana had become alarmed at a canker sore under her tongue: “a white patch, the size of my pinkie fingernail.” Canker might be cancer, she immediately suspected, possibly signaling a recurrence of her endometrial disease. She called an ear, nose and throat practice and made an appointment for what turned out to be a biopsy.

A week later, a nurse phoned to read the pathology report: “Superficial fragment of moderate to severe dysplastic squamous epithelium, cannot rule out invasive squamous cell carcinoma.” Although Dana urged her to define these terms or explain their significance in this particular case, the nurse resisted, stating that the doctor would explain them in a follow-up appointment the next week.

Needless to say, Dana immediately went online where the definitions did not comfort her. At bedtime, she wept herself to sleep, worrying that she would again lose 15 pounds in radiation, imagining her tongue cut out, brooding over a recurrence and her father’s earlier vocal cord cancer, grieving over putting her children and husband through yet another round of treatment. Finally at the appointed consultation, the doctor said the patch was “probably not cancer.” The pathologists were just “covering themselves” by saying they could not it rule out. She was incensed at having been put through unnecessary distress.

As any medical practitioner knows, uttering the words “severe,” “invasive” and “carcinoma” to a patient in remission cannot but escalate terror. Why couldn’t the nurse or the doctor find the ways and means immediately — in a brief phone call or email — to put those fears in perspective?

Given the paperwork, the patient load, and the long hours of medical professionals, we all understand the constraints within which physicians and nurses operate. Surely neither the nurse nor the doctor was willfully unfeeling. However, their tardy and cryptic announcements resulted in callous care. Whether a medical judgment is optimistic or pessimistic, its inept conveyance can upset or infuriate already anxious patients.

Some of the women in my support group were alone, groggy from anesthesia, and in pain when a poorly articulated diagnosis of gynecological cancer unhinged them. After a debulking operation, Julia recalls, a resident involved in the surgery stood near the door, avoided eye contact, and declared, “Stage 3 — we’re not talking cure now, we’re talking treatment.” When I heard similar words, I was in a crowded emergency room with only a privacy curtain between me and other patients.

Julia, a practicing therapist, believes that “these events are so traumatic that medical professionals need to look out for our emotional welfare . . . to reduce the possibility of PTSD. The person in a life-threatening emergency needs specialized mental health care.” Upon hearing a diagnosis of cancer, patients can plummet into the depressing supposition that their life is effectively over and their rapidly impending death will be painful.

Another very private member of our group — I will use her initials, I.M. — suffered through a delay between intimations of bad news and a diagnosis. After a CT scan, a hospital technician warned I.M. that she might have cancer, but he did not have the authority to discuss the matter with her. She would have to wait until her gynecologist could meet with her — the longest and most harrowing period in her life, she said with a shiver.

None of us were eased by communication strategies that have evolved since 2000 when Dr. Walter F. Baile and his associates published their paradigm for delivering bad news in The Oncologist. This article advocates a program called Spikes: S stands for finding the appropriate setting; P for gauging the perceptions of the patient; I for obtaining the patient’s invitation to hear bad news; K for providing the knowledge that the patient needs to receive; E for dealing with the emotional reactions of the patient with empathy; S for concluding with a needed summary.

Despite such a thoughtful template, miscommunication does not taint only diagnosis, as I.M. realized when she went on to confide about a more recent exchange. At her last meeting with her oncologist, they had discussed the sorry fact that the current cycle of chemotherapy had not inhibited tumor growth. The doctor gave her three choices: returning to the drug used in her first cycle, trying a clinical trial or “opting to do nothing.” Alarmed and shaken by this last proposal, she felt as if he were throwing up his hands or she had somehow been fired.

Because the members of our group had visited a hospice facility, we could assure her that she need never choose “opting to do nothing.” Even when patients decide that the struggle to combat cancer will be ineffective, they can gain access to palliative specialists who will alleviate pain and anxiety while rescuing them from pointlessly aggressive, time-consuming, expensive and debilitating treatments.

It cannot be easy for oncologists to deliver bad news so frequently, but it must be worse for them when they deliver bad news badly. The manners of patients erode as we become maddened by confusion and dread. Injurious words should never add insult to the injuries medical professionals witness and patients suffer daily.

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Out With the Old

Illustration by Sam Island

Experiments involving health and well­-being typically require their subjects to change just one aspect of their lives. Focusing on a single variable like diet or exercise makes it simpler to collect data and draw conclusions. But some researchers at the University of California, Santa Barbara, recently wondered if this minimalist approach might be shortchanging people’s potential to improve their health. Maybe it’s better to address all of our bad habits at once rather than try to make incremental changes to our lives.

For their study, published in March in the journal Frontiers in Human Neuroscience, the researchers put 31 college students, who tend to have flexible daily schedules, through a series of physical, cognitive and emotional tests and gave them brain scans. Roughly half the students served as a control group and continued their daily routines; the other half overhauled their lives completely. Every morning, they visited the school for an hour of supervised stretching, resistance training and balance exercises, followed by an hour of training in mindfulness and stress reduction, which included quiet walks and meditation. In the afternoon, they exercised for an additional 90 minutes. Twice a week they completed two interval-style endurance workouts on their own. They attended lectures about nutrition and sleep and kept daily logs detailing their exercise, diets, sleep patterns and moods.

After six weeks, the students retook the original tests. Those in the control group showed no changes. But the others were substantially stronger, fitter and more flexible. They performed much better on tests of thinking, focus and working memory. They also reported feeling happier and calmer; their self-esteem was much higher. Their brain scans showed a pattern of activity believed to indicate a greatly enhanced ability to stay focused.

These improvements, especially on measures of mood and stress reduction, generally exceeded by a great deal what had been seen in many past experiments whose subjects altered only one behavior. The study’s authors suggest that one kind of change, like starting an exercise regimen, may amplify the effects of another, like taking up meditation. What’s more, the improvements persisted: According to Michael Mrazek, the director of research at the Center for Mindfulness and Human Potential at U.C.S.B. and the study’s lead author, another set of tests six weeks after the experiment’s end showed that the change-everything students still scored much higher than they originally had on measures of fitness, mood, thinking skills and well-being, even though none of them were still exercising or meditating as much as they did during the experiment.

Of course, this study couldn’t isolate which elements of the lifestyle makeover were essential, or how the various changes influenced one another. There were too many moving parts. Dr. Mrazek says that he and his colleagues plan to tackle these issues in future experiments. For now, he says, the results suggest that “the limits of the human capacity for change may be much greater than we, as scientists, have given people credit for.”

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Loneliness May Be Bad for Your Heart

Loneliness may make you sick.

Researchers, writing in the journal Heart, pooled data from 23 studies and found that social isolation or feelings of loneliness were tied to an increased risk for coronary heart disease and stroke.

The studies included data from 181,006 men and women 18 and older. There were 4,628 coronary events and 3,002 strokes in follow-up periods ranging from three to 21 years. Three of the papers measured loneliness, 18 looked at social isolation and two included both. Social isolation and loneliness were determined with questionnaires; the researchers depended on medical records and death certificates for determining coronary events and stroke.

The scientists found that loneliness and social isolation increased the relative risk of having a heart attack, angina or a death from heart disease by 29 percent, and the risk of stroke by 32 percent. There were no differences between men and women.

“People have tended to focus from a policy point of view at targeting lonely people to make them more connected,” said the lead author, Nicole K. Valtorta, a research fellow at the University of York in England. “Our study shows that if this is a risk factor, then we should be trying to prevent the risk factor in the first place.”

The authors acknowledge that this was a review of observational studies and did not establish cause and effect.

Circumcision May Not Reduce Sensitivity of Penis

Circumcision, many contend, reduces the sensitivity of the penis. But a controlled experiment has found no evidence for the belief.

Canadian researchers studied 62 generally healthy men ages 18 to 37, 30 of whom had been circumcised as infants, and 32 who remained uncircumcised. The researchers controlled for age, education, occupation and religious affiliation, and concluded that sexual functioning did not differ between the groups. The study is in the Journal of Urology.

The scientists tested the men for tactile and heat sensitivity of the penis at four points: the midline shaft, the area next to the midline, the glans and, for the uncircumcised, the foreskin. As a control, they also tested a site on the inside of the forearm.

Uncircumcised and circumcised men did not differ in sensitivity to touch or temperature at any of the four sites tested, and sensitivity at the forearm was lower than any penile site for both groups.

While pain thresholds at the foreskin did not significantly differ from any other site, the foreskin was more sensitive to temperature detection than the glans but less sensitive than the shaft.

“Neonatal circumcision doesn’t make the penis less sensitive,” said a co-author of the study, Caroline F. Pukall, a professor of psychology at Queen’s University in Ontario. “We can conclude that there are no significant differences in sensitivity between the circumcised and uncircumcised groups.”