Tag: Voices

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.

My Vacation With a Brain-Eating Amoeba

Water rushes along the course at the National Whitewater Center at dusk. The chlorination and filtration systems at the artificial water rapids course were inadequate to kill a rare, brain-attacking organism this summer.

Water rushes along the course at the National Whitewater Center at dusk. The chlorination and filtration systems at the artificial water rapids course were inadequate to kill a rare, brain-attacking organism this summer. Robert Lahser/The Charlotte Observer, via Associated Press

I expected a bumpy ride on a whitewater trip, so when I fell off my raft and coughed up the water I’d inhaled, I wasn’t afraid. But at the time I didn’t know I was swimming with a deadly parasite.

I’d been at a bachelorette party at the U.S. National Whitewater Center in Charlotte, N.C., but after returning home I learned that I had shared the churning rapids with Naegleria fowleri, a single-celled amoeba found mostly in soil and warm freshwater lakes, rivers and hot springs. An Ohio teenager had contracted the amoeba infection after visiting the center around the same time I did, and some of the waters and sediment at and around the center had tested positive for the bug.

News that my friends and I had all been at risk of exposure triggered a few days of worry. The illness is rare and, if infected, symptoms show up between one and 10 days after exposure. Chances were that we were fine (we were), but the experience prompted me to learn more about the parasite.

Naegleria fowleri lives in fresh water, but not in salt water. If forced up the nose, it can enter the brain and feed on its tissue, resulting in an infection known as primary amebic meningoencephalitis. Death occurs in nearly all of those infected with the parasite, usually within five days after infection.

The 18-year-old Ohio woman who died most likely contracted the parasite when she sucked water through her nose after falling from a raft during a church trip.

Samples from a channel at the rafting center, collected by the Centers for Disease Control and Prevention, tested positive for the bug. The center’s channels are man-made, and it gets its water from the Charlotte-Mecklenburg Utilities Department and two wells on its property. The center has announced that it disinfects all water with ultraviolet radiation and chlorine, and it added more after the water tests.

Sediment from the nearby Catawba River, where visitors to the center can paddle board and kayak, also tested positive for the amoeba, although the actual water from the river did not test positive. Dr. Jennifer Cope, an epidemiologist at the C.D.C., said natural bodies of water might have their own ways of controlling the bug. The parasite possibly entered the artificial river through storm water runoff or people tracking it in on their shoes, said Dr. Cope.

Between the time of the young woman’s visit in early June and when the whitewater center voluntarily shut down its rafting activities a few weeks later, thousands of people could have been exposed to the parasite, but there were no additional reports of infections.

“The interesting thing about this infection is it’s almost always one single case that occurs in one location,” said Dr. Cope.

Experts say record-breaking temperatures that week may have enabled the presence of the bug, which thrives at warmer temperatures, and murky water possibly disrupted the effectiveness of the UV and chlorine disinfectant.

The amoeba is more frequently reported in southern states, especially Florida and Texas in the summer. However, after the C.D.C. received a report in Minnesota in 2010, they started tracking the bug to see how climate change might be influencing its habitat. Infections have also been documented in Kansas and Indiana. According to Dr. Cope, cases in Minnesota and other places have followed heat waves or a number of days where the temperature was above 90.

According to the C.D.C., since 1962 only 138 people have been infected, and all but three of them have died. Between 2006 and 2015, there were only 37 documented infections, mainly associated with recreational swimming, but one involved contaminated water on a slip-n-slide, and three cases were from rinsing sinuses with infected tap water, including two involving Neti pots.

Clearly, Naegleria fowleri is not your biggest risk in the water. By comparison, between 2005 and 2014, 3,536 people — which averages to about 10 a day — died of unintentional drownings in the United States.

“Millions of people participate in water activities all the time, and this is a very rare infection,” Dr. Stephen Keener, the medical director for the Mecklenburg County Health Department, said at a press conference. “It’s not the kind of thing where just getting in the water with Naegleria is going to cause you to get sick.”

There are ways to reduce exposure, and even though the risk of infection is low, you should follow them. Avoid putting your head under water in hot springs or other warm, fresh bodies of water. If you do go under water, hold your nose, or use nose clips if you know there is a risk of submersion. Avoid digging scum and sediment up near the water. Avoid fresh water activities during very warm weather, which is not very practical advice for people who enjoy swimming or water skiing in lakes or kayaking in streams and rivers. But you can remind yourself about precautions, especially after several days of 90 degree weather.

“Living in Arkansas, one of my favorite things to do is spend time at the lake,” said Dr. William Matthew Linam, a physician at Arkansas Children’s Hospital, in an email. “Having said that, I make my children hold their noses if they are going underwater.”

If you’ve been playing around in warm fresh water, especially during summer months, and come down with a headache, fever, nausea or vomiting, experts say to tell your doctor where you’ve been. And the sooner the better. Later symptoms include stiff neck, confusion, loss of balance, seizures and hallucinations.

Dr. Linam thinks early detection is critical. In 2013 he saved a 12-year-old girl named Kali Hardig, who was exposed at an Arkansas water park and is one of only three documented victims of the amoeba to ever survive the infection. He called the C.D.C. immediately, and the amoeba was found in a sample of her spinal fluid. He administered a cocktail of drugs that the C.D.C. has proven effective in the lab, including miltefosine, a breast cancer drug that the C.D.C. is working to make available in hospitals in Texas and Florida, where reports are more common.

But “even with early detection and treatment, survival is not guaranteed,” he said.

Would I go whitewater rafting again? Yes. But probably only on a cool day. And I’d wear nose plugs.

Cancer in the Family: Compliments on Being Thin

The author with her daughter, Devon.

“I’m so jealous. You’ve lost so much weight, you look amazing,” a friend says to me. “I’d love to catch the stomach bug this year and lose a few pounds myself.”

I smile. I don’t know what to say.

Since January, one of my 12-year-old twin daughters, Devon, has been in isolation in a Boise, Idaho, pediatric oncology unit receiving chemotherapy for acute myeloid leukemia. Her sister, Gracie, remains behind, in a little town south of Sun Valley. To cope, she has assigned herself as captain of Devo’s Fight Club, a band of peer supporters started with a sweatshirt she designed in the first 36 hours of her sister’s diagnosis.

Their dad and I have been driving the two and a half hours between home and hospital, splitting the week between our daughters, our jobs, middle school’s demands, puberty’s capriciousness, sports, music and running a household that includes cats, dogs, horses, cows and fish.

Devon’s cancer was as random as a dice roll. She had swollen gums for a week and then, a simple blood test to rule out mono instead declared that this sleek, athletic, freckle-faced cowgirl had a rare and often fatal leukemia.

My husband says he has gained weight since Devon’s diagnosis. I have lost weight. A lot. Neither one of us notices the other because we relate over phone or email mostly, and offer a country-style, four-finger half wave from the steering wheel as we blow past each other on the highway between towns.

Over the next 120-mile drive I am perplexed and obsessive.

“I’m so jealous. You look amazing.”

I’m nearly 51 years old and was prepared for the idea that menopause would keep me round despite my best efforts. How much weight have I lost? Was I really that fat before? Should I eat before I get to the hospital or after? The smell of food makes Devon sick. Eating in front of her seems torturous and unfair.

After I arrived at the hospital, a friend stopped by to visit. Before acknowledging Devon, she looked at me. With purrs of envy, she commented on how thin I looked. Again, I was at a loss for words. My daughter was not.

“My mom is not skinny because she worked at it,” Devon told our visitor. “It’s because I’m sick.”

The friend waved it off in the way that one deflects praise of a nice outfit with “this old thing,” and we all moved on. But every time someone notices my weight loss with a tinge of envy it makes me cringe.

Please, I want to tell them, do not admire how thin I have become since my daughter’s diagnosis — unless you are suggesting I look undernourished and want to give me a cupcake. My weight loss is not a goal you should aspire to, nor should it be confused with health and well-being. I was perfectly happy and fit in my pre-cancer-kid size, and a little hurt to hear that this shrinkage that could cost me a lot more than new pants makes me more beautiful than ever.

But what is most painful for me is the collateral damage to my daughters. When they hear that Mom is enviably thin, they hear that this is a reward, a take away for the suffering. That thin is best no matter the circumstances.

Gracie, a minute ahead of her twin, but always an inch and a pound behind, is now getting stretch marks from growing so fast. When her peers note how she “swims” in her choir dress, her mind begins the dance with body consciousness. Weight fluctuations are somewhat inevitable in adolescence and during menopause, but certainly magnified under the circumstances.

Devon’s physical changes are pushed to the bottom of most people’s thoughts now, because in this setting of a hospital room, she’s supposed to look wan and pale. Instead, her inner beauty and sense of humor are noted.

I’ve been sick and thin enough times to know I don’t want to be either. But my girls are facing this for the first time, and the ripple effects of this entire traumatic episode will surface the farther we get from the cancer. Hospital social workers are preparing us to watch for anxiety, regression, depression, eating disorders, apathy and sleeping issues. And signs of cancer returning, of course. And survivor’s guilt in Gracie, which could carve out a whole new emotional journey.

Devon, thankfully, is home now. But I’ve just been told that five months in the hospital have cost Devon nearly a third of her body mass. That her overall strength is that of a 90-year-old, and that after the chemo, her heart, which once pounded fearlessly, is in danger of failing. Her brain is wobbly from the lack of nutrition and her skin is translucent and cold where it once was earthy and warm.

When she returns to school next year, navigating the social riddle of middle school — now half a year behind her peers — and still mostly bald, and undoubtedly still thin, she will return with a self-consciousness she has never known.

Do not covet her thinness. Admire her resilience, and tenacity, and sheer will to live.

And, if you look into her eyes and you can see they are dim from the struggle, a happy-to-see-you smile or just saying nothing at all will do more than you know to help her find her way to loving herself as life has created her in this moment.

If you want to know how someone is, look in their eyes, because their size is not where the information is.

Keeping the Disruption of a Move in Perspective

Camilla Engman

At midnight, the ice cube dispenser on the refrigerator is not merely dripping. Water pours onto the floor. I drop down towels, empty the accumulated cubes from their plastic container and pop it back inside the freezer.

“Was that the right thing to do?” I ask my husband, who is trying to sleep. “For goodness sakes,” Don says, getting out of bed. We must leave for my monthly cancer blood test at 8 a.m. tomorrow.

Don pulls out the tray, puts it in the sink, and props up a little stick in the freezer, pushing up the ice maker’s metal wand in an attempt to stop the leak. Might work, might not… I’ll stay awake to see whether the deluge stops. When an unexpected disaster arises, I diminish its significance by comparing it to the worst of my cancer treatments a few years ago. I can do this because my current condition remains stable with an experimental drug.

Yet as I contemplate all the chairs and sofas and rugs that have to be donated to Goodwill, the mattresses and box springs to be given to the St. Vincent de Paul society, my late mother’s files and cabinets, Don’s late wife’s luggage and papers, his massive collection of 78 r.p.m. records, the yards of books on the shelves in the studies, our daughters’ stored memorabilia and their children’s baby equipment, the sheer volume of stuff seems daunting.

We are moving from a house of 4,000 square feet to an apartment less than half that size. One reason for our relocation: Don and I want to release our girls from the responsibility of dealing with the detritus accumulated over decades. We also have to leave because he cannot negotiate the stairs and both of us together cannot manage the upkeep.

Throughout the weeks and then the months when our beloved but aging house has to be repaired so we can sell it, workers arrive to shore up the porch, to fix the bowed ceiling supports in the garage, the cracks over the foyer doorway, a foundation that needs to be anchored to keep the structure from shifting, broken screen doors, mold in basement closets, chipped kitchen cabinets, and (oh!) a tree appears to be growing out of the chimney, and (yup!) an inspector found clogged drains — which suggest there might be trouble with the septic tank.

People tell me that moving ranks high up there on the stress index. But the commotion comes nowhere close to the terrifying havoc of cancer and its traditional treatments. Throughout the weeks and then the months of removals and renovations, the rhythms seem downright soothing, if measured against the ghastly tempos of surgeries, radiological interventions and chemotherapies.

The magnitude of cancer provides a scale against which everything else falls happily short. Cancer can be so bad that it imparts a sense of proportion. The poet Jane Kenyon once said that leukemia and a bone marrow transplant dispelled her fear of flying.

In the midst of all this chaos, I will postpone treating my recently diagnosed osteoporosis — I’m not clear yet about the efficacy of various remedies — but what about the cataract surgery? With or without glasses, I cannot see clearly and I have become the designated driver. Given the boxes mounting everywhere as well as the appointments of various people who are coming to take away the piano and the records and some paintings we won’t have room for, should I cancel? No way, I decide: a piece of cake, in contrast to cancer.

Ever shifting, the cancer terrain is treacherous to negotiate, its perilous landscape always unstable. There are roadmaps, but they often seem indecipherable. With surgeons, radiologists, and oncologists, I advance without a clear sense of how I will end up where and when.

As a cancer patient, I feel like an immigrant in a strange land. The customs of the country bewilder me. Dazed by unfamiliar sounds, sights, tastes, and touches, I had to learn a whole new language quite distinct from the idioms of every day discourse. I will never master it.

I speak of genetic mutations, chemicals and my anatomy in a grammar so simple that it resembles a 2-year-old’s. Terms must be adopted — debulking, PICC, port, PARP inhibitor — for processes I cannot really conceptualize. Frequently, physicians and nurses have to write down or spell out their prescriptions or directions. I mispronounce or stumble over words — anastomosis, extravasation, Gastrografin — that seem foreign.

So even this unsettling removal from a country house to an apartment strikes me as a change I can take in stride. After all, I know the address of my destination, the date of my prospective arrival, the route the truck will take and the neighbors speak my native tongue.

I’m staying up very late and can attest to the fact that the kitchen floor has remained dry. Don and I will travel to the hospital tomorrow and return. I will have cataract surgery and we will reside in a town whose byways may be easier to navigate with improved vision.

When you have cancer, you don’t just have cancer: You might have a broken refrigerator and cataracts and osteoporosis and loads of other issues. But you also have a unique perspective which, in a curious way, helps me keep on moving on.

Susan Gubar is the author of the new book “Reading and Writing Cancer: How Words Heal.”

Parenting Our Children After We Die

Accounts of the grief children suffer after the deaths of their mothers or fathers reinforced my desire to use the time granted by treatment to help my adult children cope with my demise. We always parent our offspring to survive us, but cancer intensifies the urgency to do so.

I am not a fan of “anticipatory grieving,” the term psychologists use to describe how some people with chronic disease mourn their expected death with their partners and kids. While I am alive, I do not want to subject my daughters to a long sojourn in the stony valley of the shadow. The idea of converting our present into a prelude of my absence distresses me.

Nor am I thinking of the medical and legal forms — advance directives, living wills, medical powers of attorney — that too many of us leave to the last minute, for those papers are in my husband’s keeping. I am also not considering the words dying people are advised to speak to their beloveds. On my deathbed, I hope I will express my gratitude and love. Given the drugs I will probably need for pain management, however, I cannot count on being coherent then.

Following the lead of other patients with cancer, I have composed two different documents to buffer my girls from the misery that ensues when a parent dies: letters my daughters will receive before and probably after my demise. Though I may never find out if these words ease their loneliness, I like to think they will. And they have certainly afforded me a respite from anxiety.

A page from “When David Lost His Voice.” <a href="https://static01.nyt.com/images/2016/06/30/health/well_gubar1/well_gubar1-articleLarge.jpg">See a larger version.</a>

A page from “When David Lost His Voice.” See a larger version.

The first is called “What’s Where.” In it, I provide the locations of my lawyer, financial adviser, bank account, will, computer passwords, the girls’ juvenilia, and my personal effects. This one-page sheet of paper concludes with the name of the funeral home that will oversee the cremation of my remains and the site of the cemetery plot for the ashes. If nothing else, I hope that the existence of such a document demonstrates to my kids that I have reconciled myself to my fate.

The second, “Letters to My Daughters,” I began a year after diagnosis and extend periodically. Here, I relate specific memories I have of my two daughters and two step-daughters and more recently of their families. Each time I write a new section, I date it. It has the look of a journal, but consists of a succession of missives, some addressed to all of them, others to one of them.

In this computer file, I recount jokes, recall musical or sports performances during their school years, thank them for material and nonmaterial gifts, characterize their temperaments at birth or what I made of them when I first met them, embarrass them with stories about gaffes they and I have committed, regale them with cooking adventures and vacation misadventures, remind them of celebrations we relished together. Periodically thickening “Letters to My Daughters” inspires me to treasure our shared past. At some point I will print it out and put it in addressed envelopes.

Recently I encountered a short story and a graphic novel that crystalized my obligations and clarified what a terminal patient with younger children can do to help them.

In “Pretending the Bed Is a Raft,” a story by Nanci Kincaid that was made into the movie “My Life Without Me,” 23-year-old Belinda realizes that she will soon die from a gynecological cancer. In a list of things to do before death, she jots down: “tape-record birthday messages for my kids up until they turn 21. Tell them I love you every day.” For her 6-, 4-, and almost 2-year-old, she spends weeks recording instructions and assurances “until she had them all legally grown.”

A page from “When David Lost His Voice.” <a href="https://static01.nyt.com/images/2016/06/30/health/well_gubar2/well_gubar2-articleLarge.jpg">See a larger version.</a>

A page from “When David Lost His Voice.” See a larger version.

Belinda suspects that if she gave the tapes to her husband, “he would listen to all of them the first night and after that he might lose them altogether.” So she determines to give them to a lawyer “who could dole them out one message at a time on the proper dates.”

About a father with larynx cancer, the graphic novel “When David Lost His Voice” considers what happens to a family when a reticent man becomes more silent during treatments for larynx cancer. In especially poignant pictorial sequences, the Belgian author and illustrator Judith Vanistendael focuses on David’s 9-year-old daughter, Tamar.

Pictures abound of Tamar’s last boat trip with her father, her swimming with the mermaid friend she encounters in the sea and sending a letter to a real friend via a balloon, her later conversations with this boy about how to preserve her father’s soul in a jar, her lying with David in his sickbed. These beautiful images convey the young girl’s fear of abandonment and her imaginative means of sustaining her attachment.

In the hospital, when Tamar hugs David’s emaciated body after his larynx has been removed, she wants her father to stay with her. Unable to speak, he writes her a note: “My darling, I am with you.”

Amid Ms. Vanistendael’s experiments with all sorts of visual forms — anatomical diagrams and scans, traditional comics, impressionist watercolors, pen and ink sketches, children’s book illustrations, surrealistic dreamscapes — I am especially moved by the small frames of David penning his note and of Tamar putting it into a vial she then strings around her neck, to remind herself that her dying father’s undying love will sustain her for as long as needed.

Susan Gubar is the author of the new book “Reading and Writing Cancer: How Words Heal.”

With Cataracts, My Own Private Light Show

Tivoli Gardens amusement park in Copenhagen at night.

Tivoli Gardens amusement park in Copenhagen at night. April O’Hare

Over the past three years I’ve been plagued by one of the common curses of aging: cataracts. During that time my vision gradually deteriorated, as the normally transparent natural lenses of my eyes became increasingly opaque, going from a gentle soft focus, to gauzy, then cloudy, and ultimately downright foggy. This was apparently the result of some unhappy combination of sun exposure, age, a number of potentially insidious environmental and dietary factors, and just plain genetic bad luck. (My mother and two of my brothers also suffered from this condition.)

Every patient experiences the development of cataracts a little differently. For me, the symptoms weren’t just the inevitable cloudiness and fogginess. They also included a problem with diminished depth perception, which I became aware of one evening when I went to pour my wife a glass of wine and ended up suavely splashing it across the adjacent tablecloth. Even more disturbing, for a period of half a year or so, I had occasional brief episodes of double vision. Naturally I feared these were serious neurological red flags, perhaps indicating small strokes — my father and one of my brothers had those — until my eye doctor reassured me that they were much more likely just another, if somewhat rarer and scarier, symptom of cataracts.

Along with these daylight deficits, I also experienced the phenomenon of night glare. On the road, the headlights of approaching vehicles struck me as painfully bright and disorienting, like some kind of blazing “Close Encounters” spacecraft streaking toward me out of the darkness. In addition, my night glare symptoms took the only slightly more benign form of halos appearing around light sources. If I looked up at, say, a full moon on a clear night I would see not just the old face of the man in the moon, but that familiar glowing visage wreathed by a ring of smaller spheres — half a dozen mini-moons sprouting around its circumference like the petals of a flower.

Likewise, if I directed my attention toward smaller light sources — say the windows of distant buildings across from my apartment — instead of registering as single bright points of light, each little window appeared as an arcade of stars, a shimmering necklace of gleaming beads. Thus my normally prosaic neighborhood cityscape of gray and beige high-rises became a jeweled fairyland, reminding me of the famous Tivoli Gardens in Copenhagen. (Actually, I’ve never been to that storied old amusement park, but the travel-poster images I’ve seen invariably show a radiant nighttime lightscape of sparkling fountains, shimmering ponds, rainbow rows of colored lanterns and, on summer nights, dazzling displays of fireworks.)

Of course, that magical panorama outside my window was ultimately more the result of pathology than pixie dust. And unfortunately, there’s no little pill you can pop that will miraculously make things clear up. So as time went by and my cataracts gradually “ripened” — my ophthalmologist’s charming expression for getting worse — my only option became surgery.

Not surprisingly, the very thought of anyone wielding sharp, shiny objects anywhere near my eyes induced a case of the major willies.

Modern cataract-removal surgery, though, turned out to be hardly the nightmare assault I’d feared. The operation involves removing the diseased natural lens and replacing it with a synthetic one, much as hip replacement surgery consists of removing an arthritic or damaged hip and inserting a metal and plastic version in its place. Certainly it’s a delicate procedure, but not one that requires flashy recent advances like prosthetic robot arms that move in response to mere thought. In fact, cataract surgery is among the most commonly performed operations in the country. The procedure for each eye took less than an hour, during which I remained awake but comfortably sedated. I was aware of lights, sounds and occasional gentle pressure, but it was all virtually painless. And the results have been remarkable.

The new world that floated into focus on an ocean of post-surgical eyedrops over the next few days has been strikingly — sometimes even alarmingly — clear, crisp and bright. And for the first time in years I find myself able to effortlessly read a book (including footnotes), peruse restaurant menus in low light and make out the fine print on medicine bottles. I can decipher distant road signs and foreign film subtitles, recognize faces from afar, and even distinguish the expressions on those faces.

The only downside has been that when I now scan the neighborhood outside my window at night, my private Tivoli is nowhere in sight. The curtain has descended on that alluring light show. Not that I’m complaining.

The benefits far outweigh this small deprivation. In the world I navigate these days, the colors are richer, the outlines sharper. For a change I’m looking forward to really enjoying a vacation with the prospect of doing some sight-seeing and actually being able to see the sights. Right now, in fact, I’m thinking of Europe, perhaps, say, Denmark, maybe Copenhagen, which I’ve been told at this time of year can be … wonderful.

Richard Liebmann-Smith is a writer and editor based in New York who, thankfully, can now read again.

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Talking to Younger Men About Growing Old

For Robert Goldfarb, 85, resisting the decline of old age goes beyond the treadmill.

For Robert Goldfarb, 85, resisting the decline of old age goes beyond the treadmill.

An electronic display on the treadmill in my local gym reminds me I’m not only running on the machine, but out of time. Its graph comparing changes in the runner’s heart rate to that of peers goes no further than age 70. I’m 85, and find it ominous that the machine presumes that anyone that old shouldn’t be on the thing.

Reminders that I’m now officially one of the old-old appear with greater frequency. Some are subtle, like the treadmill display; others are more jarring, like my daughter’s approaching 60th birthday. Most reminders are well-meaning: a young woman offering her seat on a bus, an airport employee hurrying over with a wheelchair, happily telling me I won’t have to walk to the gate or stand in line. I graciously decline their kindness, struggling not to protest, “But, I’m a competitive runner!” That I feel robust doesn’t matter; the man I see and the man they see are two very different people.

I recently read something the philosopher Montaigne wrote over 400 years ago: “The shorter my possession of life, the deeper and fuller I must make it.” His words inspired me to seek a path through old age without surrendering to it or ignoring its reality.

I began by fighting memory lapses. Rather than substituting “whatever” for an elusive word, I now strain to recall that word, even if means asking others to bear with me for a bit. I avoid phrases that suggest the end of things, like “downsizing” or “I no longer do that.” I subscribe to internet memory games. To recapture the excitement I felt in long-ago classrooms, I began rereading books I read in college.

I also decided to reach out to men my age to learn how they navigate through growing old. Like most of the men I began speaking with, I’m a product of the 1950s and its pressure to conform, to avoid risk, to shun anything that marked one as “different.” Many young people then were warned by parents that signing petitions bearing words like “protest” or “progressive” would get them rejected for a job or fired when they grew up. Men in my platoon didn’t embrace when we parted after serving in the Korean War. Closer than brothers, we settled for a handshake, knowing that’s what men did.

Almost immediately, I found conversations with men my age awkward. Attempts I made to discuss aging were met with jokes about the alternative. With few exceptions, those I spoke with regarded feelings as something to be endured, not discussed. It quickly became clear I was free to contemplate growing old, but not with them.

My wife suggested I meet with younger acquaintances to learn if they would talk with me about aging. I did, and found that men just 10 years younger spoke openly about changes in their minds and bodies. No one joked or changed the subject when one of them confided, “My father had Alzheimer’s, and I’m beginning to forget the same things he did,” or, “My firm’s managing partner said I was slowing younger associates and had to retire.”

It puzzled me that they felt so much freer to discuss feelings than men born just a decade earlier. Could it be because they were shaped by the ’60s, rather than the ’50s? Growing up, they protested what we accepted, challenged authority we obeyed, celebrated their individuality while we hoped to be one of the men in a gray flannel suit. They were the “me” generation, defined by Woodstock and rock ‘n’ roll, while my generation found comfort in Eisenhower’s paternal leadership and listening to soothing ballads like George Shearing’s “I’ll Remember April” and Margaret Whiting’s “Moonlight in Vermont.” Separated by a sliver of time, the two decades seem an eternity apart.

As I seek to reinvent myself, questioning what I do out of habit and what I’m not doing that could be liberating, it’s the voices of these younger men that I hear as I run on the treadmill today. That and the voice of Frank Sinatra from the ’50s, crooning a line from “September Song” that captures what I’ve been feeling: “But the days grow short when you reach September.” It’s realizing that I’ve reached November that presses me forward, ignoring the treadmill’s display, hoping I can lead a deeper and fuller life before I run out of time.

Robert W. Goldfarb is a management consultant and author of “What’s Stopping Me From Getting Ahead?”

An Artist Takes On Cancer

Susan Gubar

Susan Gubar Vivienne Flesher

In 2010, at age 29, the songwriter and performer Benjamin Scheuer was given a diagnosis of stage 4 Hodgkin lymphoma, a cancer of the lymph nodes. He recounted his experience, along with other family perplexities, when he played himself in his one-man autobiographical musical, “The Lion,” which opened Off Broadway last year. In the new video “Cure,” directed by Peter Baynton and premiered here on Well, Mr. Scheuer conveys the dread that brands cancer patients, whether or not their type of disease is treatable.

As sung by a self-proclaimed optimist who has been given the good odds of an 85 percent chance of full remission, “Cure” begins with a defenseless Mr. Scheuer, supine on a bed. The camera fragments him into body parts: a mouth, a limb, a trembling torso. From an area near his heart, where a port would have been implanted, rivulets of ink streak down his arms to the tip of his fingers, down his legs to cover the soles of his feet, branching over his quivering or convulsing midriff.

The chemotherapy Mr. Scheuer received was called A-B-V-D: Adriamycin, Bleomycin, Vinblastine and Dacarbazine. “Cure” depicts the chemicals striking like lightning, as if to shock the body or map it with bombed roadways, tracking a jagged terrain. The speed of the tattooing brings to mind the words “invasive” and “systemic.” We are looking at a representation of cancer treatment, but the video evokes terror at the disease’s malevolent capacity to spread quickly.

For viewers familiar with Franz Kafka’s story “In the Penal Colony,” the calligraphy on Mr. Scheuer’s skin may recall the sentences, etched by torture machinery, on a condemned prisoner’s body during the 12 hours it takes for him to die. Remarkably, though, the tone of the singer remains less shocked or shocking, more ruefully contemplative.

In a quiet voice, Mr. Scheuer sings about learning the results of testing done after 12 treatments. Although throughout the ordeal he has been fighting panic and fear, they threaten to engulf him as he worries about ending up like his father, with cancer in his brain and his spinal cord. Clothing starts to grow over him, covering his marked body. Does his being passively clothed mean that he is being costumed for a coffin?

After the doctor informs him that the treatment has worked, after his jacket is buttoned, Mr. Scheuer finally sits up, hearing the words “You’re cured.” But the sad final tones of his voice and guitar reflect his isolation in a room with bed sheets that remain indelibly imprinted with the sinister designs.

Although “Cure” seems quite distinct from the more amiable and upbeat folk tunes in his album, “Songs from the Lion,” its hermetic room with its isolated inmate raises issues that Mr. Scheuer addressed with the photographer Riya Lerner in their book, “Between Two Spaces,” namely the alienating landscapes of treatment. (Some of their collaborative work will be on exhibit at the Leslie-Lohman Prince Street Project Space on June 7.)

Cancer patients, who must shuttle between their homes and hospitals, frequently experience the clash between familiar, comfortable environments and strange, anxiety-producing settings. Mr. Lerner explores the disparity but also the blurring of these worlds in a book composed of portraits of Mr. Scheuer interspersed with snippets of texts from his journals. For me, as for Mr. Lerner and Mr. Scheuer, the contrast involves clothing: One of the humiliations of the hospital entails my flesh being exposed in cubicles where doctors, nurses and technicians are fully clothed.

“Between Two Spaces” opens with a picture of a suited but barefooted Mr. Scheuer bending over to choose between two pairs of shoes. It concludes with him sporting a coat and hat in a snowy park. Inside his recording studio or at home he appears blanketed or costumed: “I could control, to the tiniest detail, what I wore,” he explains in a reprinted journal entry, “so the worse I felt the more care I put into the shine of my shoes, the knot of my tie.” But in a PET scan or undergoing chemotherapy, he is only partly robed or completely undressed beneath or entering massive machinery.

The cover of “Between Two Spaces” features what looks to be a soothing picture of a naked Mr. Scheuer partly submerged in a bathtub. At least in my experience, bathing in a tub occurs only in the security of home, not in the hospital. Yet the journal entry, appended to this image within the book, mentions his watching a frightening video of Japan’s tsunami: “The land is now the sea, the churning, angry ocean. Black, filled with unwilling passengers, debris, creating clouds of mist, blindness, dust dirt smoke all grey and brown, all the houses and their red roofs are squeaking clean of their foundations like boats unmoored.”

What had at first seemed a serene portrait of the artist with his eyes closed, floating on the surface of the water, now portends drowning and death. Out of the hospital, as inside it, the patient endures an inexplicable natural disaster.

To my aging eyes, the youthful vulnerability of Benjamin Scheuer makes both the video and the photographs moving. Although, unlike me, he deals with a curable disease, he resembles all cancer patients who must come to terms with the term remission. The poignancy of Mr. Scheuer’s and Mr. Lerner’s images arises from the implacable effect that estranging clinical spaces impose on previously secure domestic places.

Even the cured must take their cancer experiences home with them where, paradoxically, remission — untrustworthy as a safe haven — continues to unmoor us.

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After a Cancer Diagnosis, Reversing Roles With My Mother

Steven Petrow (left) with his siblings, Jay and Julie, and mother, Margot Petrow, on her 84th birthday in February.

Steven Petrow (left) with his siblings, Jay and Julie, and mother, Margot Petrow, on her 84th birthday in February. Caroline Petrow-Cohen

If anything about my mother was conventional, it was the smoking. Like many of her generation she smoked early and often, and I swear she waited to light up until we were hermetically sealed in our family’s Ford Country Squire. My brother, sister and I hated it — we tried over and over to get her to quit. She made some attempts: Patches and gum, even hypnosis by a Russian. She had some short-term successes, but soon enough I could smell the smoke on her breath or see the burnt-out butts hidden in her desk drawer ashtray.

The last time I begged Mom to quit, she shot back with a stern rebuke: “I very much appreciate your concern,” followed by an expletive. The message was clear: Mind my own business. Indeed, Mom has always been “spirited.”

From both ends, ours was not an easy relationship.

Four years ago, at 80, Mom wound up in the emergency room after she passed out in bed; her carotid artery was 90 percent blocked. The doctor ordered a routine pre-op chest X-ray and found a mass that turned out to be lung cancer. “Did my smoking have anything to do with this?” Mom asked the handsome cancer surgeon, almost flirtatiously. “Yes,” he told her. “Then I’ll quit,” she said. And that, finally, made her stop, once and for all.

A few weeks later “Dr. Handsome,” as the family began referring to him, took out part of her left lung at the very same New York cancer hospital where I’d had cancer surgery three decades before. I’d wound up there only because Mom had insisted that I get a second opinion after my first operation, an orchiectomy to remove my cancerous testicle, at a hospital on the opposite coast. While I’d been overjoyed when the oncologist told me I was a candidate for “watchful waiting” and that he’d “never lost a patient,” Mom thought the latter comment quite odd for a doctor who treated cancer patients. I caved, flew east, and learned I needed more treatment, stat. Score one for Mom.

During Mom’s first hospitalization for her cancer our roles flipped. I became her caregiver, and she became my charge. With nurses busy elsewhere, I made sure her bedpan got changed, or contacted the surgeon to boost her pain medications when needed. On a no less important matter, I made sure she got a chocolate, not vanilla, milkshake daily. After my own stays in the hospital, I had learned how to “work” the hospital staff, using genuine praise, patience and small gifts of candy.

I also had that firsthand knowledge of what it meant to suddenly become a cancer patient, dependent on the kindness of strangers and family alike. I knew what it was like to face the mechanical roar of the CT scanners, not to mention the anxiety and fear that your book of life may be coming to an end sooner than you’d expected.

Some days I held Mom’s hand, her Jungle Red manicure always perfect, as the nurses pricked her repeatedly to get a good line. Other times I’d just sit with Mom and let her talk. About my father. My sibs. And herself.

Increasingly, she asked me about my cancer travails, which included multiple surgeries and four rounds of chemo. “I can’t believe you went through all this,” she said time and again. Still, I’d been in my 20s; mom was now in her 80s. As different as our cancers were, not to mention our ages, I’d become her travel guide in this new country of illness.

Then one day she piped up, her voice an octave or two higher than usual: “I’m afraid.”

“Afraid of what?” I asked.

“Of the pain of dying. And leaving you kids.”

I told her we’d make sure she didn’t suffer. And as for the three kids, I told her not to worry about us. “We’re all in our 50s now,” I reminded her.

As I had decades ago, Mom recovered from her first operation. And also like me, she moved into a netherworld I knew all too well: The “after” stage, during which you struggle to believe it’s over, all the while dreading its return.

Last year I moved her semi-annual scan from late December to mid-January. With bad news always a possibility, why risk ruining the holiday? I was glad I’d done that when the scan showed a new mass. Although the doctor was the official bearer of the bad news, it was left to my brother, sister and me to explain what that meant, all the while reassuring her we’d be there to help.

As it turned out, one of the most important decisions she’d have to make was what treatment, if any, she should soldier through to combat this new malignancy. Dr. Handsome recommended radiation, but he didn’t sound very optimistic. I decided Mom needed a second opinion, maybe even a third, and with some cajoling — just as she had urged me on so many years before — she sat down with a radiation oncologist. He was much more encouraging about what to expect, and she took his advice.

And so it was not too many months ago, after helping her back into her street clothes and into the Uber after her daily radiation, that we were headed home from the hospital. She grasped my hand tightly and told me how glad she was that I was with her. “Whatever our problems were,” she said, “I’m happy they’re behind us.” I squeezed her hand back.

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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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