Tagged Voices

Pretty Girls Are Supposed to Smile


Credit 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.Credit 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


Credit 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


Credit 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.Credit

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.Credit

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.Credit 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.Credit

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 GubarCredit 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.Credit 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 GubarCredit 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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Learning to Walk in My 60s


The author, Jacques Leslie, taking a step.

The author, Jacques Leslie, taking a step.Credit Blink Inc.

I knew about my limp before I knew much else about myself. It was 1951, at the height of the polio epidemic, and I was a 4-year-old in Beverly Hills, Calif. My father took me swimming in the pool of a club where he played tennis. Sometime later, a woman who’d swum in the pool a week or two before me was stricken with polio. A few days after that, while we were on vacation, I began limping and developed a fever.

After a doctor paid a visit to our hotel room and somberly conferred with my parents, they drove me to the Los Angeles County Hospital, where I spent a night or two in a hallway with dozens of other patients because the polio wards were full. For reasons I never grasped, I was sometimes tied to the bed, even though I clearly wasn’t going anywhere. I’d noticed that my right leg was numb, and I could no longer move it.

By the time I got home from the hospital a month later, I could walk, but only a few steps at a time. I remember once collapsing at the top of our staircase and waiting for someone to carry me back to my room. The disease shortened my right leg, partially atrophied my calf muscle, limited my ankle’s flexibility and curled my foot perceptibly inward.

Over the next decade I saw doctors regularly, performed daily exercises supervised by my stern father, and for months at a time wore corrective plaster-of-paris casts intended to twist my foot back toward normalcy. None of this kept me from an active childhood. I loved baseball — I played catcher, of course — and loathed the coach who yelled at me for running slowly, as if I could will speed. I dreaded running laps in phys ed class, where I’d inevitably come in last. Because my balance was poor, I fell down often. And I hated dancing, which seemed to require everything I lacked.

But in some ways polio felt like a distinction. It handed me a knowledge that others didn’t have. It made me serious when most kids around me were anything but. I understood Chester, Marshal Dillon’s sidekick on “Gunsmoke,” who limped his way though television’s longest-running series. I grasped his isolation, his lack of confidence, his compensating insight into everyone else. If I wasn’t already destined to be an observer, polio made certain that I was one, and laid the foundation for my career as a professional observer, a journalist.

By the time I reached adulthood, I more or less forgot about my limp. I spent six years as a foreign correspondent, including two covering the Vietnam War (while I was classified 4-F because of my leg). I zealously exercised and paid no attention to the dipping of my right shoulder each time I put weight on my right leg. If someone asked me about the limp, I’d mention polio and told them I must be tired.

My polio story would have ended there if I hadn’t consulted a physical therapist named Lisa for an unrelated problem a couple of years ago.  “We have to change the way you walk,” was one of the first things she said to me, with an urgency that took me by surprise. I was 67, and the idea of changing my walk struck me as at least a few decades too late, if it had ever been possible at all. “No,” Lisa said. “If you don’t learn to walk properly, the older you get, the more likely you’ll fall down.”

After a close examination of my leg, she stunned me once more: “Your limp is probably unnecessary.” In becoming accustomed to limping as a child, she concluded, I’d sacrificed the tone of healthy muscles, from my abdominals to my toes, that supported walking. If I reawakened them, I’d have enough muscle to achieve a normal stride.

Over the next year and a half, I saw Lisa nearly 50 times. At the beginning of each session, she’d watch me walk, then devise a treatment plan on the spot. She didn’t go for broke, as a previous therapist had: Her approach was gradual and intuitive. The exercises she assigned me were challenging but not overwhelming, and seemed to build upon themselves.

Each day at home I worked with straps, bands, assorted balls and a low tottering platform on which I learned to keep my balance while standing on my right foot — something I’d always considered impossible. As the muscles kicked in, one by one, I realized how I’d maneuvered around their weakness. As I walked, I often held my left my arm slightly behind me, stiffly, as if on call to provide balance. When I sat down, I planted my left foot on the floor and curled my right foot behind it — only my left side was rooted in the ground.

My foot eventually flattened out. The shoulder dip disappeared. Walking stopped feeling like a chore. My daughter said she no longer heard the familiar ker-CHUNK ker-CHUNK of my old gait. My spirits improved. My confidence grew. My writing career even enjoyed an uptick. And why not? For the first time in my life, at nearly 70 years old, I was standing on my own two feet.

A former Los Angeles Times foreign correspondent, Jacques Leslie is the author of “The Mark: A War Correspondent’s Memoir of Vietnam and Cambodia.”

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Picking Up an Infection in the Hospital


Credit Stuart Bradford

When the emergency room doctor pulled the blanket aside, looked at my elephant-size inflamed leg and said, “Whoa!” I knew that wasn’t a good sign.

Nor was the reaction of the emergency room nurse, who glanced down at my bizarrely swollen extremity, then started nervously backing away.

Health care practitioners are trained not to show their feelings, but there are clearly times when things look so bad that even they can’t hide their reactions.

I was in the emergency room at Los Robles Hospital in Thousand Oaks, Calif., because a few days earlier I had undergone what was supposed to be a relatively straightforward outpatient procedure to remove a skin growth on my leg. A couple of days after the surgery I felt fine. The surgeon told me I could drive whenever I was up for it, so we took our grandchildren to the Magic Castle in Hollywood. Running from room to room to see the different sleight-of-hand acts, I no longer felt fine. Now I felt a searing knife-like pain in my leg, which soon began to swell in size.

I went back to see my surgeon, who looked a little concerned. You have an infection, she said. Take these two antibiotic pills, schedule a Doppler scan for the next day, and all should be well.

That night, my leg got even bigger; from the waist down one side of me looked like I weighed 350 pounds (I’m not even half that.) My wife and I spoke to the surgeon, who was vague. “You could go to the E.R. if you want,” she said. “Or wait.”

I went and was admitted immediately. That night, a Doppler study showed no life-threatening blood clots. With no beds available, I was kept in the emergency department overnight, taking catnaps while trying to blot out the screams and moans from down the hall, before being given a room, and intravenous antibiotics, the next morning.

“This is very serious,” said Dr. Barry Statner, the infectious disease specialist who came to see me the next day in my hospital room. “We’ll cure you,” he said while firing questions at me about my medical history. “But you need to know, this is very serious.” I wondered if I was going to lose my leg.

For the first time in my life, I had entered the world of the powerless sick. Like most people, I had long heard about the dangers of contracting infections in hospitals or surgical centers, but I never took them seriously. I assumed that, except for the worst cases, such as those caused by improperly disinfected scopes and other instruments, they were little more than a minor annoyance.

In fact, infections kill, and they do so regularly, even to people who are otherwise healthy.

“There are diseases that can take a regular healthy person and destroy them within hours,” Dr. Statner told me. “You don’t get a second chance. People don’t realize how rapid and lethal infections can be.”

In the United States in 2014, one in 25 patients contracted a hospital-borne infection on any given day, according to the Centers for Disease Control and Prevention. Some 722,000 Americans developed such infections in hospitals in 2011, and about 75,000 died during their hospital stay.

I count myself as somewhat lucky. My wound was infected with a relatively run-of-the-mill strain of Staphylococcus aureus, and after a week in the hospital, followed by two weeks hobbling around the house, where a nurse visited daily to pack my wound with prodigious amounts of gauze, I was on the road to recovery. I was fortunate it wasn’t one of the more serious infections that lurk around hospitals, like MRSA, a “super bug” strain of Staph that is resistant to most antibiotics, or C. difficile, which can cause months of relapsing and severe diarrhea.

No one knows how my infection happened. It was the first, and only, case of this type of infection at the surgical center that year, I was told by Dr. Richard Hoberman, the medical director and the anesthesiologist who had put me under general sedation during my surgery. Clearly shaken by what happened to me, he unexpectedly popped in to my hospital room early in my stay to apologize.

My infection resulted in my being “the subject of several very uncomfortable meetings with the hospital administration” and a five-page written report, Dr. Hoberman said. (They passed on sharing a copy of that report with me.)

Hospitals are anxious to reduce hospital-borne infections, to reduce deaths and improve their reputations. There are also immediate financial incentives: Medicare may penalize hospitals for infections acquired in the facility.

The medical center I’d gone to for my surgery, associated with Los Robles Hospital, practices all the well-known standard forms of infection prevention: constant washing of hands; sterilizing equipment; giving patients preoperative antibiotics; cleaning operating room surfaces and thorough cleaning at night. In addition doctors are not allowed to enter the operating room wearing the same scrubs they wear in the street. To prevent the spread of microbes, cellphones and jewelry are banned, as well as ties.

But infections still happen. While most infections happen at the time of surgery, according to Dr. Statner, they can occur in the hospital room as well. A break in the skin, a lapse in the handling of a paper surgical cover, lackluster cleaning, intravenous lines or catheters that remain in too long — all can result in infection.

In the end, stamping out infections depends on the vagaries of human behavior. “Medical care is done by people. There can be gaps in quality. People must remember to do certain things,” said Dr. Arjun Srinivasan, the associate director for health care associated infection prevention programs at the C.D.C.

“Far too many Americans get sick in the hospital,” said Dr. Thomas R. Frieden, director of the C.D.C. “The importance of making care safer cannot be overstated.” One limitation is that the C.D.C. can only recommend, not mandate, practices to reduce infection, he said. And because hospitals are owned by various corporations, it can be a challenge to know how effectively patients are being protected in any one hospital. If a patient is moved from one hospital to another across town, he said, it “can cause problems,” given that one hospital may have less rigorous infection-reduction policies than another.

Hospitals are experimenting with new disinfection techniques. For example, some disinfecting machines using ultraviolet light are so powerful that no one is allowed in the room when they are in operation. And routine measures like thorough hand washing, and having patients thoroughly shower using chlorhexidine before surgery is helping bring infection rates down in the United States in recent years. In the three to six years before 2014, depending on the type of infection, the rate of surgical-site infections has dropped by 17 percent, C. diff by 8 percent and hospital-borne MRSA by 13 percent, according to the C.D.C. However, there was no change in the rate of urinary tract infections caused by catheters between 2009 and 2014.

Infection rates have dropped even more steeply in Britain, where total MRSA reduction from 2004 is now 80 percent, according to Dr. Mark Wilcox, the head of medical microbiology at Leeds Teaching Hospitals and the head of the C. difficile task force for Public Health England. Leeds Hospital used to see 15 to 25 MRSA infections per month; now it gets five per year, he said.

Dr. Wilcox attributes their success in part to having a coordinated, single health system for the entire country. To encourage hygiene, National Health Service hospitals post current infection rates on boards that can be seen by doctors, patients and visitors. Hospitals are “obsessional” about hand hygiene, Dr. Wilcox said. To do the best cleaning job, health workers must be “bare below the elbows,” with no watches on the wrist. Lab coats, while making a doctor look professional, are also banned, as they can brush up against patients and transfer bacteria from one patient to the next.

Hospitals that fail to meet infection reduction targets are visited by a “hit squad improvement team” that demands a new plan, Dr. Wilcox said. Those that fail lose the right to decide how to spend some of their annual budget.

“A decade ago, people would say that only a small proportion of infections are preventable,” said the C.D.C.’s Dr. Srinivasan. “Now we know that a large proportion are preventable. We’ve turned that paradigm on its head.”

Pricing a Year of Life


Credit Stuart Bradford

A radio producer investigating cancer costs once asked me, “What is another year of your life worth?” During my flummoxed silence, she informed me that experts mention the figure $50,000. Can patients like me — older people with recurrent disease — estimate the expense of a future year of cancer treatment to decide whether it’s worth it?

I began to understand the origin of the number when my nephew sent me an article in The New England Journal of Medicine, “Updating Cost Effectiveness.” Its authors explain: “For more than two decades, the ratio of $50,000 per quality-adjusted life-year (QALY) gained by using a given health care intervention has played an important if enigmatic role in health policy circles as a benchmark for the value of care.”

Used by economists, the QALY calculates quality and quantity of life to judge the monetary worth of medical inventions. Since my cancer was diagnosed in 2008, I have wondered how to make this reckoning within our for-profit health system. So with misgivings I set aside the plight of the uninsured and began considering not generic measurements of cost-effectiveness but how much I — as an insured patient — had paid for one year of cancer treatment.

It turned out to be impossible. Never — during four years of operations, radiological interventions, and cycles of chemotherapy — had I been informed beforehand about the cost of any consultation, procedure, equipment or drug. Nor did I understand what would be covered by insurers and (when I got older) Medicare or what would have to be paid out-of-pocket.

After the consultation or procedure, I received impenetrable statements from providers, stamped in large letters, “This Is Not a Bill.” They were followed by cryptic printouts from the hospital that clearly were bills, although next to many entries the word “pending” appeared.

Now, given my erratic bookkeeping, I cannot calculate what I ended up spending.

The camouflaging of cancer costs poses an unprecedented problem. There is no analogue in life — including the approach of death — in which I remain so ignorant of expenditures. Although I have ascertained what cremation, a grave site, and a marker cost, I have no idea what the costs of my treatments amounted to.

During those same years, I could not predict treatment complications that required subsequent procedures and outlays. When an operation necessitated another, the bills multiplied. Humbled by my own unknowingness, I took to heart Kierkegaard’s insight that we must live life forward, even though it can only be understood backward.

Obviously, I was in neither the physical nor the psychological state needed to adjudicate the paperwork. Dazed, frightened and depleted by the alarming threat to my mortality and the debilitation of treatment, I demoted the bills to a nasty irritant. An excellent job with good benefits buffeted me from facing what less lucky people confront: a financial crisis triggered by cancer treatment.

Stints in the hospital enlighten many patients about prohibitive co-pays and costs above coverage ceilings for the large sums charged by surgeons, anesthesiologists, radiologists and oncologists; for operating and hospital rooms, tests and scans, medicine and equipment as well as a box of tissues. The title of an article in The Oncologist about the financial distress of insured patients speaks volumes: “The Financial Toxicity of Cancer Treatments.”

Add to these expenditures exorbitant out-of-network fees, the loss of wages resulting from treatment-related appointments and disabilities, the cost of travel to and from the hospital, and the need to hire child care or housekeeping or elder care assistance. All these combined payments can be staggering.

As for the new cancer drugs, pharmaceutical companies apparently charge whatever the market will bear. A new type of medication, a PARP inhibitor similar to the one I receive in a clinical trial, has been approved by the Food and Drug Administration for recurrent ovarian cancer patients. Lynparza, produced by AstraZeneca, costs about $11,000 a month. That would come to $132,000 a year. After a media flap a few years ago over Zaltrap — doctors at Memorial Sloan Kettering boycotted it, saying it was no more effective than a less expensive drug — its producers cut the price in half.

No wonder, then, that people with cancer are more likely to go bankrupt than other Americans. The authors of The New England Journal of Medicine article conclude that the QALY has been underestimated. For a single threshold now, they would suggest either $100,000 or $150,000 per QALY.

Whatever the estimate, a crude ratio of cost effectiveness, like the QALY, seems presumptuous. How can qualitative factors (nausea, fatigue) be converted into quantitative numbers? How can general calculations account for individual variations (my preference for fatigue over nausea) or overriding personal beliefs and principles about what constitutes a valuable existence?

Yet it would help patients like me to participate in sober public conversations on these issues since many of us are aware that individual decisions about medical costs sidestep vexing social questions of why they are inflated and how they will tax our children and grandchildren. At the least, more transparent communications would alleviate widespread fears that living life forward could trip us backward into penury.

For the past three years, the clinical trial in which I participate has covered most cancer-related expenses. When the drug in my trial fails, I want to have some say about whether another year of my life is worth the cost of treatment. But it will take a change in the current way of doing medical business to make that possible.


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A Bittersweet Passover: Cancer, Remission and Change


Credit Camila Engman

Despite good news about my cancer treatment, it has been a hard winter, so I am looking forward to Passover. By retelling the story of the Jewish people’s escape from slavery in Egypt, the Haggadah — the text recited at the annual Seder — celebrates deliverance and springtime renewal. How would its rituals and prayers resonate for me this year, when cancer concerns were unexpectedly supplanted by other tribulations?

Alesha, the research nurse of my clinical trial, informed me in February that she and my oncologist were requesting an amendment of the Phase 1 study rules on my behalf. Since August 2012, I have driven up to Indianapolis every month for tests that have charted my vital signs and the CA-125 blood marker of ovarian cancer. The signs remained good, the marker stayed low, and each month Alesha passed over another bag of the experimental pills. Soon the leash tying me to the hospital will loosen. Maybe I will get two or even three months of pills all at once.

My jubilation was tempered by the difficult circumstances with which I currently contend. Over the past year, my husband, Don, has suffered a series of debilitating accidents, surgeries and infections. Just when I was priding myself on caring for Don as devotedly as he had cared for me, I slipped and fractured my pelvis. Once energetic seniors, Don and I now hobble around on canes, a geriatric duo. Grounded, we realize that we must move out of a country house we love but cannot maintain.

As I turn over the pages of the Haggadah in preparation for the last of some 22 Passovers we have commemorated here, I find myself startled by its images of the inextricable collocation of joy and sorrow. On the Seder plate, parsley, celery and scallions represent nature’s regeneration; however, they are dipped into salt water, signifying the tears of oppression. We read that the lettuce on the plate starts out sweet, but it becomes bitter if left in the ground too long, just as people do in bondage.

The Hillel sandwich best exemplifies the discord of elation and distress. It consists of matzo eaten with charoset (often a mixture of apples, honey, cinnamon and wine) and maror (horseradish). The horseradish, if strong enough, can elicit yowls from guests simultaneously savoring the honeyed fruit which, oddly, represents the mortar used in making bricks for the pharaohs.

Dissonance resounds throughout the Seder story. The sustaining matzo we are enjoined to offer all who are hungry and needy is the bread of affliction, baked hastily by migrants fleeing for their lives. Although the story says that the Angel of Death passed over the houses of Jews, the first-born babies of the Egyptians died. Liberation from slavery occurred centuries ago, yet the Haggadah states that in every generation, all participants should regard themselves as if they have personally come out of slavery. We are each and every one of us strangers in a strange land, but the Jews arrived at their promised destination.

The state of cancer survivorship has everything to do with this weird sort of discordance, or so it seems to me. Life-saving protocols produce injurious side effects, impairments or mutilations. The relief of remission is shadowed by fear of recurrence. While I profit from a targeted drug, two members of my support group report the failure of their chemotherapies. Those in the group who exult at being cancer-free mourn the three participants whose lives have been cut short by the disease.

According to the essayist David Rakoff, living with cancer may also blur “the borders between the micro and the macro,” leading people to conflate private with public woes: “The world seems lethally friable.” As the political becomes personal, the incivility and violence of presidential contests in this country scare me. Then there are the bombings overseas. That politicians recurrently refer to terrorist cells as cancers rightly suggests that cancer terrorizes its hosts, but the victims of terrorism have no recourse to treatments.

This year, the narrative of the Seder will remind me that we all remain in captivity while millions of refugees suffer in exile and populations across the globe struggle with anti-Semitism, racism and sexual slavery. To symbolize the need for a renewal of faith in forces that can right these grievous wrongs, after the meal we will open the door for the stranger and sing a hymn to the prophet Elijah, who heralds harmony and redemption.

Considering cancer research, I rejoice that the clinical trial in which I participate means a little bit of redemption for women who test positive for the BRCA1 or BRCA2 mutations. Drugs called PARP inhibitors, like the one I take, will extend the progression-free survival — the length of time during and after treatment of a disease that does not worsen — of women whose ovarian cancer was caused by these genetic mutations. But I grieve over the majority of ovarian cancer patients besieged by a miserable prognosis.

For me, living longer means getting old — which, my mother always told me, is not for sissies. As I welcome Elijah this April, I will be hoping that Don and I garner the strength to open another door next year — not in our spacious country home, rich in the memories of Seders past, but in the promised land of a one-story, in-town apartment we can manage to negotiate. It is a bittersweet prospect for which Passover will prepare us.

Susan Gubar is the author of “Reading and Writing Cancer: How Words Heal,” which will be published May 17.


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After Physical Therapy, Why Not Cancer Therapy?


Susan Gubar

Susan GubarCredit Vivienne Flesher

In mid-January, after a fall on invisible ice, I was informed by an emergency room doctor that my fractured pelvis would heal in six to eight weeks. To help me recover from the injury, therapists started coming to my house. Their ministrations posed a question that nagged at me: why aren’t trained professionals made available to cancer outpatients in the way occupational and physical therapists are routinely assigned to orthopedic patients?

The occupational therapist appeared only a few times, when I was completely incapacitated. With extraordinary tact, she taught me how to unclothe in a narrow bathroom and then positioned me on a bench in the tub where I could use a hand-held shower.

Throughout February, my physical therapist, Sherry, rang the doorbell twice a week, entered as she heard me yell “Come in,” and placed a clean pad under the large bag she put on the floor near the blue couch on which I reclined. Out came the equipment she used to check and record my vital signs. The rituals that followed slowly raised my levels of mobility and confidence.

At the beginning, Sherry suggested ankle pumps and a few stretches. She would watch me rise to the walker and shorten its legs or tell me to change my gait. A week later, she had me move to the bedroom to show me the least painful way to get into or out of the bed. So I could sleep on my side, she propped a pillow between my legs.

Later in February, Sherry taught me the Clamshell: lying on my right side with my knees bent, feet together, I moved my left knee up a few inches. I could feel the muscles strengthening. In early March, she encouraged me to place my hands on the kitchen counter and raise my strong leg off the floor for 20 seconds in a pose I called the Flamingo. Putting weight on my weak leg gave me the sense that I might meet my goals: to graduate onto a cane, go up and down steps and become a functioning biped again.

Not one comparable sequence of instruction occurred during my eight years of cancer treatments, although I was much more incapacitated and traumatized at the start. Reeling with anxiety back in 2008, I never received any professional assistance at home for wounds, edema, neuropathies, fatigue, weakness, eating disorders, drains, elimination problems, rashes, insomnia, infections, a PICC line, and other complications that were especially shocking during the first year after diagnosis. I relied only on family and friends.

What escalated the injury of cancer for me was the passivity medical protocols produced or required. I was knocked out by anesthesiologists, cut up by surgeons, and infused with chemicals by nurses. “The very word ‘patient’ (Latin root, patior, ‘to suffer’) is a giveaway,” the columnist Max Lerner once explained. “Patients suffer things to be done to them, becoming thereby the acted upon, the diminished.”

Cancer patients like me would profit from supportive care aides who could spring us from this induced passivity and its accompanying fear. In my case, such a counselor would have allayed the bewilderment of treatment and also empowered me to exert a modicum of control over the broken rhythms of everyday existence.

Perhaps very wealthy people find and hire staff with the requisite expertise, but it never entered my mind. My new oncologist, Dr. Mina, assures me that breast cancer patients do receive physical therapy after mastectomy to prevent lymphedema. After a massive debulking operation for ovarian cancer, however, no physician or nurse ever hinted at the possibility of my obtaining outpatient therapy. Wouldn’t people with prostate or lung, throat or colorectal cancer prefer to receive help at home than go to the emregency room — a prospect that terrified me?

Sherry’s interventions persuade me that therapists could provide cancer patients a multitude of ideas — on pain management, nutrition options, personal hygiene strategies, psychological and sexual prompts, meditation and massage and workout routines — to ameliorate the harms cancer and its treatments typically cause.

Is this sort of therapy unavailable because insurance companies will not cover it? Or it is unavailable because it brings no profitable returns to hospitals? Yet paid therapists might be less expensive than recurrent E.R. visits as well as the psychic toll exacted by the depression that frequently burdens cancer patients.

Why not use the model of the occupational and physical therapist in orthopedics to create a central role for therapists in oncology, advisers who could help cancer patients help themselves in taking small, strengthening steps? After surgery and at the start of chemotherapy, my family and I would have given anything for the house calls of a creature we never imagined: an oncological therapist.

“What a comfort such a person would have been,” I said to Sherry after one of our sessions. “An oncological therapist might have given me what you give me — a sense of agency.”

Sherry said she had done extensive training in a host of proficiencies that would be useful for cancer patients, as have many of her peers. “Physical and occupational therapists with all sorts of skills pertinent to cancer treatment abound, but to enlist them, specialists in surgery, radiology, and chemotherapy need to think outside their specialization.”

Then she added, “Maybe the oncologists need to be educated.”


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Reinventing Yourself: Stories From Our Readers

In a recent column, Jane E. Brody wrote about several people who had reinvented themselves. Some had changed their lives because they were no longer happy in their chosen careers, while others simply needed a change or were driven by a new-found passion.

We asked our readers to tell us how they had reinvented themselves. As usual their stories did not disappoint. Here are a few of our favorites, from a woman traveling the country as a volunteer to the late-in-life rabbi to the 70-year-old yoga instructor.

From Mailman to Teacher


Frank spends some time with one of his students.

Frank spends some time with one of his students.Credit

“Upon retiring from a 30-year career as a humble mailman, I began volunteering in my granddaughters’ school. I quickly found that I really, really liked working with kids, and I spent a year training with Americorps as a reading tutor for struggling students. This training has given me an encore career as a substitute special-education assistant in the public schools. It’s joyful, very challenging and immensely satisfying, maybe even rejuvenating. Compared with my old days, as Bob Dylan says, ‘I was so much older then, I’m younger than that now.’”

Frank Robertson, Seattle

The Professional Volunteer


Ms. Traynor rides a water buffalo while volunteering at Heifer Ranch in Arkansas.

Ms. Traynor rides a water buffalo while volunteering at Heifer Ranch in Arkansas.Credit

“After a 45-year career as an administrative assistant, most of that time as a single parent, I would have loved to retire, but without adequate financial resources, what could I do? It it was time to be creative.

I received a call from friends saying they had found a a small college in Sitka, Alaska, where the administration welcomed volunteers, offering free room and board. I began to rethink retirement. After all, all I needed do was get there!

It was a full calendar year before I was ready. In July, 2005, I retired. Feeling like Joan of Arc, I drove out of my driveway on my way to Alaska and never looked back.

I found that I was welcomed by any organization I approached to help, that college in Alaska, Heifer Ranch in Arkansas, Menaul School in New Mexico, a wildlife refuge in Florida, plus many others. I have traveled the entire country on a fixed income, getting out and giving back, always receiving more than I contribute, making many new friends in the process.”

Barbara M. Traynor
Slingerlands, N.Y.

The Later-In-Life Rabbi



“After having a successful career as a screenwriter for 25 years, I decided to become a rabbi. I entered rabbinical school at age 54 and it took nine years for me to graduate. Today, at age 66 I am one of eight rabbis at Wilshire Boulevard Temple, the biggest and oldest synagogue in Los Angeles.”

Susan Nanus
Los Angeles

The Lawyer Who Became a Chaplain

“After 40 years working as an attorney, I retired from the law in 2014 to enter a six-month chaplaincy internship program at Brigham and Women’s Hospital. This led to volunteering as a chaplain at Boston Medical Center for six months and then a six-month chaplaincy internship at Boston Medical Center. I was later hired by Boston Medical Center as a per diem chaplain to help out on the weekends and one day a week.

The chaplaincy work is intense, typically comforting patients and families whose lives have changed dramatically and precipitously. As a 70-year-old, I feel incredibly fortunate to be able to engage the world in this way.”

Bill Crane

The Financially Savvy Actress



“In 2008, I graduated college with a degree in drama and boarded a plane to the Philippines as a cast member on the international tour of ‘Cinderella,’ the musical. While performing in Asia, however, the American economy was in the midst of a meltdown. So, by the start of 2009, I was back in New York City, a young, recently unemployed actress at the height of the financial crisis.

I dove deep into personal finance, learning as much as I could. I sat at the back of the show’s tour bus every evening, plugging my daily expenses into spreadsheets. I studied investment principles while taking the subway home after late-night restaurant shifts.
As I began to share the tips and tricks I had uncovered with peers, I stumbled upon an eager audience: Regular people were struggling to get a grasp on their money, lost in the jargon and obscurity of traditional financial institutions and media.

I now use my love of theater and storytelling to teach young audiences how to leverage the powerful tools of personal finance and entrepreneurship to build a life on their own terms. The messages of change, progress and gratitude I receive in reply are more gratifying than any curtain call or on-stage bow I’ve ever taken.”

Stefanie O’Connell
New York

Back to School at 53



“After 14 years doing a combination of engineering, teaching English in China and social justice work, I decided to take stock of my life. I’m now 53 years old and in my second year of graduate school studying for a master’s degree in clinical mental health counseling.

Reading articles, writing papers and engaging with my much-younger peers has invigorated my mind and energized my desire for my soon-to-be new vocation. While many of my peers are trekking to work, I’m in my jeans and sneakers making my way to classes with plenty of caffeine and snacks as I plow through my coursework. Frankly, it’s hardly work to me. Rather, it’s just part of a journey of not only reinvention but rediscovery of who I am and what I care about. It’s taken me nearly 30 years but I’m getting there!”

Elena Yee
Providence, R.I.

The 70-Year-Old Yoga Instructor



I” retired from a job with the state of N.Y. about 15 years ago. At the time, I had been practicing yoga for about 20 years. I was offered an opportunity to teach at a senior center in the area and agreed to do it. I based my classes on what my teachers had been teaching me over the years. About seven years ago, I began training to be a yoga teacher at the age of 70. That was very challenging for someone who had taken her last college course many years earlier. I was the oldest person in my class to complete the training.

Today, I teach about five classes a week, some at my home where I have transformed my former dining room into a small studio. Most of my students are older and have some limitations physically and I try to accommodate my students’ needs. This ‘new’ career brings me great joy and satisfaction. I consider myself to be a very lucky woman!”

Claire Malone
Delmar, N.Y.

A New Career Working With Seniors



“After 25 years of working in financial services, I am now the executive director of an assisted living community. When the job market for financial executives became more challenging during the recession, I looked around for a back-up plan.

I found assisted living after helping a friend’s mother who was sick. After helping her, I volunteered at a local assisted living. I loved working with seniors! I got my master’s degree in gerontology and started a position as business director of an assisted living community within a few months of each other. In 2013, I was promoted to executive director of our assisted living community. Every day is a good day. I love what I do and I think it shows.”

Betsy Connolly
Wayland, Mass.

Meeting My DNA


Marie Tae McDermott and her dog, Cody, at Bushwhick Inlet Park in Brooklyn.

Marie Tae McDermott and her dog, Cody, at Bushwhick Inlet Park in Brooklyn.Credit Andrew Renneisen for The New York Times

I was adopted when I was 6 months old, so I don’t know much about my family medical history. I don’t know, for example, whether I’m at increased risk for breast cancer, heart disease, mental illness. But home DNA testing is changing all that.

The tests are sent through the mail, no lab visits required. And they’re not limited to the human genome.

I tested the DNA waters with Cody, my four-legged adoptee. After shelling out $69 for a Wisdom Panel DNA test kit, I swabbed the inside of Cody’s cheek with a cotton swab from the kit and dropped it in the mail. Six weeks later I received Cody’s genealogy chart by email. While I’d always considered him pure mutt, with his apple-shaped head and stocky middle, results showed an uninterrupted lineage of Chihuahuas going back three generations.

I could only hope for such clarity. I ordered a kit from 23andMe, one of a handful of companies that now offer home testing for humans. Unlike the other major genetic testing companies Ancestry and Family Tree DNA, 23andMe offers both health and ancestry results. The cost is $199.

As with Cody, I collected a saliva sample and dropped it in the mail. A few weeks later, I got an email saying my results were ready. I logged on to the website to see my ancestry composition distilled into a pie chart. The chart showed that my ancestors hailed from Korea, something I’d already been told. What I didn’t expect to see were the smaller slices indicating I had Japanese and Chinese ancestors scattered in. Seeing my genealogy for the first time was thrilling.

23andMe also scanned its database of others who had submitted their genetic material to the company for potential DNA matches. It identified over a hundred of my relatives, ranging from fourth to eighth cousins. 23andMe predicts that the average person has around half a million eighth cousins. The number gets exponentially larger as you go back generations. Some geneticists believe that all humans are at least 50th cousins with one another.

A messaging tool on the 23andMe website also allows you to connect with DNA relatives who’ve also taken the test. I eagerly exchanged messages with four of my distant cousins: the parent of a Chinese adoptee living in the Netherlands, the stepfather of a fifth cousin in the Philippines and a fellow Korean adoptee. Nobody could tell me more about my genealogy.

Only a fourth cousin named Henry who lives in California could shed light on a common ancestor who lived in Japan in the 1700s. He wrote in an email: “It would be an okay assumption that you may have genes to my father’s side, as his family was not in the bushi/samurai class, but comfortable merchants. Also, my patriarchal prefecture was sort of a ‘doorway’ to Japan.” Henry and I became Facebook friends, but I still have no tangible information about my ancestors.

Joy Lieberthal, a clinical social worker who specializes in issues related to adoption, said that for adoptees digging into their past, it’s important to look at the big picture. She explained that genetic testing kits really just give adoptees a history lesson in migration and land conflict over time, and that it’s important not to overstate the importance of the results. The bottom line: Just have fun with it.

In my health report, some of the inherited traits ranged from the frivolous (my sensitivity to bitter tastes) to T.M.I. (my type of earwax). It did pinpoint some of my physical attributes, like eye and hair color. It confirmed that I was lactose intolerant and predicted my athletic performance, based on my type of muscle fiber, compared to world class athletes. It suggested that, were I a runner, I would be better suited for sprinting than cross-country. It also confirmed that I lacked an enzyme to process and detoxify ethanol, making me sensitive to alcohol.

Over all, I was tested for 122 health risks and 53 inherited conditions. It showed I had a slightly higher than average risk for developing rheumatoid arthritis and ulcerative colitis and no inherited conditions. I had an elevated risk for developing restless leg syndrome. Was that why I felt that strange, jumpy sensation in my legs a few months ago? I made a note to mention this to my doctor at my next physical.

Through social media, I found other adoptees who had used DNA testing. An adoptee named Bee told me that her DNA test confirmed that she suffered from a rare and incurable genetic disease that affects her kidneys; with the results from her test, she was able to go to her doctor for an official diagnosis. She later learned that she had passed on the disease to her daughter, she told me.

Another adoptee named Janine, who was born in Korea and told by her adoptive parents that she was of mixed race, ordered a DNA kit so that she could learn about her biological father’s European lineage. Her ancestry results indicated she was 99.9 percent East Asian and only 0.1 percent European – hardly mixed race.

For me, DNA confirmed what I already knew: that the past is murky. After Henry’s email, follow-up messages from the relatives I was in contact with remained unanswered. It’s fun to think that I share some of my 20,000 genes with total strangers. But I think I’ll leave it at that. Piecing together a 20,000-piece jigsaw puzzle is a task too monumental to think about.

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