A Film and Story-Telling Festival Focuses on Disability

Recently I had the opportunity to attend part of the New York ReelAbilities Film Festival. The 6th annual event in New York involved all five boroughs, but was based primarily at Manhattan’s Jewish Community Center. The program featured a dizzying spectrum of disability perspectives and concerns on film. It also included talks, photographs, parties and story-telling in presented by The Moth.

RealAbilities NY Disabilities Film Festival, 2014

RealAbilities NY Disabilities Film Festival, 2014

I liked everything about this festival. Perhaps the best aspect is that individuals with all kinds of issues can come, in real life, and meet other people with similar kinds of concerns. And so might their parents, or spouses and others who want to know, to gain a better sense of the experiences of people with varied physical forms. I don’t know that I could have imagined this kind of event happening, when I was a child or a young doctor.

For this post, I’ll stick to “the Moth” presentations, which numbered five. My instincts tell me not to declare favorites, so I’ll just provide a tidbit about each of the stories:

The first speaker walked onto the stage with just a bit of guidance. He was young, blind, handsome and funny. He spoke of growing up in a suburb. He was assigned chores and minded those. When in his early 20s, he signed up to participate in  a program that involved cleaning on Coney Island, the people in charge tried to keep him standing at the edge of the project, to not let him help out in a meaningful  way. He felt marginalized. By speaking with the other participants, gradually he entered the workspace. He got to get his hands dirty, doing grunt work with the rest of the crew. Happiness ensued.

Next, a dark-haired, smiling woman who has aphasia – difficulty speaking, casually stood as she told her story. Her name is Yvonne Honigburg, and she advocates for the National Aphasia Association. She described growing up with a sometimes secretive mother, of learning she was adopted, and of searching for her biological mother. Eventually the three met in a restaurant in New Haven, CT. Upon meeting Yvonne’s natural mother, the adoptive mother said something surprising. It ended well.

A woman in a wheelchair delivered the third, marvelous story. Millie Gonzalez has long curly reddish hair. She wore a sequined, shiny top and spoke of how she has always loved to dance. Evidently she has spina bifida, and after years of dancing with crutches, as a child and in high school, she’s learned to dance in a wheelchair. A while back she attended a previous ReelAbilities festival and saw the film Musical Chairs. After the event, upon trusting a man, perhaps the film director, he “twirled” her in the air, or something like that. Her heart stopped, momentarily, for the thrill of it all. It was very romantic. After that, she’s gone belly-dancing and advocating for people with disabilities.

The fourth speaker told of a moving story of her life with severe kidney disease and impaired vision. When she was a child, and the doctors finally explained to her what was wrong, she felt a sense of relief, knowing at least that there was an explanation for what she was experiencing. After some dark times, and dialysis, she received a kidney from her mother. Still, she lacked self-esteem, and hibernated. She spoke openly and vulnerably, about what led her to see the value of living. #uplifting

The final speaker walked on stage and, after a few minutes, mentioned that she had a prosthetic arm. She’d spent most of her childhood, adolescence and college years trying to hide her deformity. She didn’t want to be perceived as defective. In becoming a mother, she realized that her child had certain expectations….I cried, just a bit.

Seriously, you should listen to the Moth to find out what happened. And next year, or in your city, check out the ReelAbilities Film Festival.

No favorites. Each story is distinctly beautiful, and instructive (like people…)

All for a while,

ES

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Learning About Lou Gehrig, his Diagnosis, Disability and Pride

I can’t resist mentioning that today I caught part of another old baseball flick in the gym. Pride of the Yankees, on TCM, features Gary Cooper as Lou Gehrig. Sam Wood directed this 1942 MGM classic in which Babe Ruth appears, briefly in cameo, as Babe Ruth. A Times reviewer, writing after its July 1942 release, complained that the film didn’t include enough baseball, nor sufficient drama until its end. That may be true. But your athletically-challenged author was moved by this film, and stopped by some of the scenes depicting how information was conveyed in that era, about the star’s declining health.

movie poster

movie poster, 1942 film “Pride of the Yankees”

I learned about Lou Gehrig in medical school. Amyotrophic Lateral Sclerosis (ALS, aka Lou Gehrig’s Disease) is a progressive and serious neurological disease that tends to affect a person’s voluntary (“motor”) muscles, such as those of the arms, legs and face. The CDC maintains a national registry for the condition, which is of unknown cause and, to the best of my knowledge today, remains on the shortening list of incurable conditions. The NIH estimates that 20-30,000 people are living with ALS, and that some 5,000 or so are found to have this condition each year in the United States. It typically affects, or “strikes” – as it’s almost universally metaphored, people in their forties or fifties.

(Forgive me the verb, this post is both serious and personal.)

A former colleague, whom I admire and will always remember for what he has taught me about immunology and even more by his working through illness, has ALS and has continued contributing for the long time, over 20 years, that I have known him. What enables some people with illness, i.e. patients, to keep contributing in their field of expertise is, first, their wanting to keep working. But it also requires a sensitive and encouraging environment – a workplace that allows people with knowledge, who become disabled or limited by health concerns, to work as best they can.

I learned that Lou Gehrig was a New Yorker. He was born to German immigrants in Yorkville, near where I live in Manhattan. According to his biography in the Baseball Hall of Fame, the left-hander was born in June 19, 1903 and died on June 2, 1941, a few weeks shy of what would have been his 38th birthday. He was called the Iron Horse and played first base for the Yankees. In the movie, it takes Gehrig a while to realize, or admit, that he can’t play baseball – that he’s stumbling and struggling to even hold a bat, or run or walk. Once the athlete acknowledges his limitations, he is treated kindly and generously by his manager, teammates and fans. At first, the doctor in the Scripps Clinic doesn’t want to tell him the truth about his condition. But Gehrig wants the numbers, the statistics, facts. Finally, after Cooper, playing Gehrig, asks him if it’s “three strikes.” The doctor answers that, yes it is. The patient understands his meaning. No one in the room can pronounce the words “amyotrophic lateral sclerosis,” but Gehrig gets the picture. The patient doesn’t want to tell his wife but, as these things usually go, she figures it out.

The Yankees and Gehrig’s manager try to keep his illness a secret, but after he gives up his spot on the roster, it becomes progressively evident that something is seriously wrong. One nugget in the film is an interaction with what might be considered a peer patient. Early on, Gehrig encounters a boy who can’t walk, and offers him encouragement. Later, once Gehrig’s condition has become evident, the young man comes to tell him thanks, and to show Gehrig he’s gotten better, by not giving up. But the boy becomes tearful and appears not to enter the stadium. It seems his hero’s deteriorating condition is too much to watch.

On July 4, 1939, Gehrig gave a speech before a packed Yankee stadium. He thanked his teammates, coach, sportscasters, athletes of other teams, fans, his parents and his wife, and concluded, famously, that he was “the luckiest man on the face of the Earth.”

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Old and New Music, on Dying to Give Birth

Recently I saw Inside Llewyn Davis, the new Coen brothers’ film about a folksinger in Greenwich Village. The moving, fictional story takes place in the early 1960s. The protagonist, handsomely portrayed by Oscar Isaac, can’t quite make it as a musician. He roams from one friend’s apartment to another, never quite sure where he’ll go next. There’s a lot you might explore, intellectually, about his journey, a cat named Ulysses and a trip to a Chicago club called the Gate of Horn.

I liked this sad movie, a lot.

What I nearly missed, though, was the significance of one of the songs, “The Death of Queen Jane.” Fortunately an obstetrician-gynecologist and neighbor, Dr. Peggy Polaneczky, reminded me by her post on its relevance to women’s health. The English ballad tells of Jane Seymour, a wife of Henry VIII. She died in October 1537, at less than 30 years of age, days after delivering a male heir. Queen Jane’s labor was prolonged, her death attributed to complications of childbirth.

Image of the actress Carey Mulligan, Inside Llewin Davis

The actress Carey Mulligan, Inside Llewin Davis

Fast-forward 475 years and a bit more…

In 2012, the WHO reported that approximately 800 women die each day from preventable causes related to pregnancy. That figure translates to over 300,000 unnecessary deaths each year, worldwide. Pregnancy-related deaths declined sharply in the United States and most of the world in the 20th Century. The CDC indicates that U.S. maternal death rates have been on the up since 1987. The reasons for this trend are not established. That some are having children at an older age may be a factor. But most pregnancy-related deaths in occur in young women. The problem is particularly grave among African Americans. Likely contributing risks, from 1987 to 2009, include lacking of access to health care, and having chronic medical conditions like diabetes, hypertension and obesity.

Shifting notes –

The music Inside Llewyn Davis is lovely, haunting. Seeking details on the traditional English folksong, “The Death of Queen Jane,” led me through a different sort of journey. Here’s a link to some information on it from the Mainly Norfolk English Folk and Other Good Music ProjectOn YouTube you can find versions performed by Joan Baez, among others. Wouldn’t you know it, the music of her sometimes lover, Bob Dylan, plays toward the closing of the Coen brothers’ film? Dylan has a song, “Queen Jane Approximately,” that was picked up by the Grateful Dead. The consensus on Wikipedia, though, would suggest that Dylan’s lyrics have nothing to do with the Tudor Queen.

At that point I stopped searching for answers about Jane Seymour’s cut life, whether she was in labor for two or nine days, and the meaning of the song. And I’ll close with this sound clip of “The Death of Queen Jane” from Inside Llewyn Davis, performed by Oscar Isaac. You can catch a fragment of the desperate woman’s plea.

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“The Dallas Buyers Club” Takes on AIDS, Peer Patients, and Not Taking “No” for An Answer

If you’re a doctor or nurse of a certain age, the Dallas Buyers Club will jog memories. If you’re among those who lost a loved one or friend to AIDS maybe 20 or 30 years ago, or not, this new film might wrench your heart. Anyone watching will be pushed to think hard about drug development today, the slow pace of progress for metastatic breast cancer and other young life-takers, and the FDA’s role in sanctioning, or blocking, treatments for adults with terminal illness.

Dallas Buyers Club image from FOCUS films copy

scene from “the Dallas Buyers Club” (Focus Films)

The movie draws loosely on the story of Ron Woodroof, a Texan rodeo rider who developed AIDS around 1985. A rail-thin Matthew McConaughey, who says he dropped nearly 50 pounds for this role, somehow nails the look of young, HIV-infected men who were filing into hospitals and clinics back then. After absorbing his diagnosis and said prognosis of 30 days to live, the cowboy teams up with Rayon, a (fictitious) transgender woman portrayed, memorably, by Jared Ledo. Together with an oddball group of sympathetic accomplices, the pair set up shop, to procure and distribute unapproved medications the doctors won’t prescribe. Jennifer Garner plays a sympathetic young physician, Dr. Eva Saks, who in the movie crosses lines a bit incredibly, too personally in the second half, to help the AIDS patients and commiserate. But otherwise the film is spot-on. It captures the desperation, determination and clinging together of people, then, affected by what was incurable disease.

One question that sticks with me, as a physician reflecting on the story, is how unclear it is which drugs, exactly, helped the protagonist. Woodroof, as depicted in the film, briefly takes AZT and then moves on to all kinds of substances including DDC (Zalcitabine) from Mexico, interferon of unknown purity or dose from Japan, protein supplements and more. Through a mix of stuff he lives until 1992, seven years beyond what the doctors first told him to expect. An old-school clinical trialist, almost any of my former teachers, and anyone who appreciates evidence-based medicine (as I do, for the record) would know and state and insist that you can’t draw any conclusions based on what happened to the movie’s protagonist, or Woodroof in real life.

On the other hand, clinical trials are painfully slow. Published trials can be flawed. Even if they’re randomized and well-analyzed, the findings can be hard to interpret when it comes to a single patient’s course and well-being. What’s a dying man to do?

Another relevant point, for people affected by almost any health problem, is the extent to which the patients took charge in the Dallas Buyers Club. They found and shared information about their disease independently of their physicians. The image of an AIDS patient using an old computer in a library, looking up articles about his condition, anticipates patient networks of which there are hundreds, on-line and in communities, today.

I came away from this movie feeling optimistic. Because when I was a student, 30 years ago, I wouldn’t have believed that a man afflicted by AIDS, as McConaughey portrays, could now, likely, live for a long time.

#hope, and happy Thanksgiving,

ES

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50-50, A Serious Film About a Young Man With a Rare Cancer

scene from "50/50"

The other evening I watched 50/50, a film about a 27 year old man with a rare kind of cancer, a malignant schwannoma. The tumor is growing and pushing into the protagonist’s lower spine. The movie, based in part on the true story of scriptwriter Will Reiser, surprised me by its candor.

Actor Joseph Gordon-Levitt smoothly portrays Adam Lerner, who soon finds out he has cancer. The opening scene captures him jogging in an early morning. He seems a nice, cautious and perceptive young man in a relationship. His rowdier buddy, played hardily by Reiser’s real-life friend Seth Rogan, proves loyal during Adam’s chemotherapy and, later, big spine surgery.

By its cast, I expected this might be a guys’ flick. Yes, there are jokes about sex and cancer. But the film reveals the young man wincing during sex because he’s in pain and can’t hide it. The young women are pretty much all attractive, but they’re not interchangeable props; the relationships are complicated and plausible.

An unexpected perk in the movie is the realistic family dynamic. Lerner’s mother, a worrying sort, wants to be there for her son and doesn’t trust that his girlfriend will sufficiently help him. Anjelica Huston effectively fills the mother’s role. Lerner rarely answers her calls, while she’s biding her time with a husband who, due to Alzheimer’s, doesn’t comprehend what’s going on. She respects her son’s privacy, but feels, understandably, isolated and scared.

The doctors are flawed, of course. The oncologist at the start doesn’t directly tell Lerner of his diagnosis but, instead, speaks into a dictaphone about the malignancy. He refers Lerner to an analyst of some sort, a young woman with little experience, for talk therapy.

When Lerner goes for surgery, the pre-op scene is frighteningly realistic to anyone who’s ever had a young family member go through this kind of surgery. The family and friends are worried. The patient, calmest of all among the group, can’t determine what will be his fate.

The term schwannoma derives from Schwann cells. These elongate cells normally envelop long nerves and rarely become malignant. Most schwannomas, or neurofibromas, are benign; these can cause pain and other symptoms by pressing on nerves, but don’t usually don’t spread or grow quickly. The names can be confusing, as there are several similar-sounding terms for these growths. Some people inherit a disposition to these non-malignant tumors. Rarely, as seems to have been the case in this story, a schwannoma takes an aggressive, invasive and sometimes lethal course. Another name for the cancerous form is malignant peripheral neural sheath tumor, or MPNST.

50/50 refers to the odds of Lerner’s survival, about which he read somewhere on the Internet shortly after his diagnosis. I’d give the movie a high score, 90+, mainly for its lucid, accessible approach to a cancer patient’s experience and concerns.

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The Iron Lady, a Film About an Aging Woman

image, "the Iron Lady"

Over the weekend I saw the Iron Lady, a movie about Margaret Thatcher, the former Prime Minister of England.  I expected a top-notch, accented and nuanced performance by Meryl Streep, and got that.

The film surprised me in several respects. It’s really about aging, and how a fiercely independent woman withers. The camera takes you within her elderly, blurry, husband-conjuring mind. She’s forgetful and rambling, but maintains an interest in current events, and ideas. She looks back on events in her life with pride and, seemingly, some regrets.

Well done, worth seeing!


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Medical Aspects of ‘The Help’: The Plight of a Woman with Recurrent Miscarriages

the character Celia, in "The Help"

Last weekend I saw The Help, a movie on race relations in Jackson, Mississippi 50 years ago with lingering implications for people who hire “help” to take care of their children and tend to their personal business anywhere in the world, including now. It’s a heavy-handed, simple-message and nonetheless very enjoyable film, with fine acting and imagery, based on the book of the same title by Katherine Stockett.

One element of the narrative interested me from the medical perspective, having to do with the plight of a pale, thin and sexy young woman who’s marginalized by the white Jackson social elite. The character Celia, portrayed with flair by Jessica Chastain, lives, isolated, on an out-of-town plantation. She spends her days alone while her husband’s at work. The nominally proper women in town, while playing bridge and otherwise gathering, call her “white trash,” and she sometimes lives up to their prejudices by drinking too much and behaving erratically.

It turns out the young woman’s having a hard time because she’s unable to bear children. She feels inadequate and fears her husband might leave her if he found out. Her history of recurrent miscarriages is discovered by the African American maid, Minny, who comes to work with her. In a revealing scene Minny finds Celia locked in the bathroom, severely bleeding from a miscarriage and crying. The maid, played with conviction by Octavia Spencer, helps her to recover, clean up, and bury the fetus in a shoebox in the yard, nearby three other small burial sites. With this, the young woman’s odd behavior becomes comprehensible.

I couldn’t help but think of countless women of earlier eras, and friends I’ve known in my adulthood, and women I’ve treated as a physician, who felt really bad about their inability to bear children. These days, with fertility treatments and work-ups for miscarriages so prevalent in communities like mine, we don’t see so many cases like Celia’s. It used to be a common problem, and it still is in many regions in the U.S and certainly in other parts of the world, for women who have difficulty conceiving or carrying babies to term, not just to not have children, but to become sad, and feel inadequate about themselves as women.

The Help is a worthwhile film at many levels, with fine acting, a good, PC message and story. I hope movie-goers will take special note of Celia’s predicament.

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May I Call You ‘Doctor’?

Last week I considered the relationship between the Prince Albert and his speech therapist in The King’s Speech. One aspect I wanted to explore further is why the future king initially insisted on calling the practitioner “doctor.”

In real life, now, patient-doctor relationships can be topsy-turvy. This change comes partly a function of a greater emphasis on patient autonomy, empowerment and, basically, the newfangled idea that the people work “together, with” their physicians to make informed decisions about their health. It’s also a function of modern culture; we’re less formal than we were a century ago.

Patients enter the office with their own set of information and ideas about what they need. The recent Too-Informed Patient video highlighted this issue, effectively.

Doctors are human, we are painfully aware in 2011. They make mistakes and they sometimes need to have dinner with their families. They may even let us down.

When I was a young physician, my patients almost universally called me

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The King’s Speech is Not Just About Stuttering

Over the weekend I went to see the King’s Speech. So far the film, featuring Colin Firth as a soon-to-be-King-of-England with a speech impediment, and Geoffrey Rush as his ill-credentialed but trusted speech therapist, has earned top critics’ awards and 12 Oscar nominations. This is a movie that’s hard not to like for one reason or another, at least most of the way through. It uplifts; it draws on history; it depends on solid acting.

What I liked best, though, is the work’s rare depiction of a complex relationship between two imperfect, brave and dedicated men. At some level, this is a movie about guys who communicate without fixating on cars, football (either kind) or women’s physical features. Great! and, dear Hollywood moguls, can we have some more like this, please?

The film’s medical aspects are four, at least: the stuttering, the attitude of physicians toward smoking, a closeted sibling who had epilepsy and died at an early age – just mentioned in passing, and, finally, the king’s trusted practitioner’s lack of credentials.

King George VI (Wikimedia Commons)

At the start, Prince Albert (young King George VI) has a severe speech impediment. It’s said that he stutters, and on film Firth does so in an embarrassingly, seemingly extreme and compromising degree. He’s the second of George V‘s sons, and might or might not succeed to the throne depending on events in history, his older brother’s behavior, and his capacity to serve the Empire at the brink of war. Being effective as King of England in 1936, and especially at the start of war in 1939, entails speaking confidently.

Prince Albert’s been through the mill with doctors who’ve tried to help him talk. Some recommend he smoke cigarettes; these, they advise, would help him to relax and, they say, is good for the nerves. One asks him to speak with a mouthful of marbles, on which this doctor watching the film worried he might choke. Eventually Albert’s wife, Elizabeth (Queen Mother to be), finds a speech therapist in London, Lionel Logue, who uses unorthodox approaches with, by rumor, exceptional results. Eventually Prince Albert – or “Bertie” as the therapist insists on calling him – trusts and accepts help from this peculiar Australian who, it turns out, developed his methods of assisting stutterers through his work with shell-shocked soldiers in WWI.

According to MedlinePlus, stuttering affects as many as 1 in 20 children, with typical onset before the age of 5. The problem can persist for weeks or years, of manifold causes. Some families are disproportionately affected, but there’s no known genetic cause. Stuttering can arise upon emotional trauma. It’s more common in boys than in girls.

As for doctors recommending cigarettes, the concept is familiar from some old literature regarding schizophrenia. In a recent post, I included a curious TV ad featuring doctors smoking Camels. I don’t have a good sense of just how comfortable most physicians were with smoking prior to 1950, and would like to know more. Did they have their suspicions?

Finally, on the relationship between the king-to-be and Mr. Logue, it’s fascinating: Prince Albert prefers to call his therapist “doctor,” but Logue is adamant that they refer each to the other on a first-name basis. Well into the film, we learn that Logue hasn’t ever attended speech therapy school, or medical school, or whatever it is that someone who treats another person in London circa 1930 should have completed before providing quasi-medical, essentially psychological care as he did to his royal highness. Nonetheless, the king trusts Logue more than any suitably-credentialed therapist recruited by his staff. This topic – of the therapeutic relationship, trust and expectations – warrants separate attention.

Meanwhile, I hope you have the chance to see this movie, if you haven’t already. The Oscars are scheduled for February 27, just two weeks away.

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On Precious

This is my first film review, if it is that.

I was tempted to write about Ethan Hawke, hematologist among vampires in Daybreakers, but gore’s not my favorite genre. A mainstream choice would have been Harrison Ford solving the enzyme deficiency of Pompe disease in Extraordinary Measures, but I didn’t get sucked in. I chose Precious, instead.

Poster for Precious, the film based on the novel “Push,” by Sapphire

This luminous movie relates to the practice of medicine everyday, big-time. Directed by Lee Daniels and based on the novel Push by Sapphire (Ramona Lofton), the film follows a very obese Harlem teenager who’s pregnant with a second child by her abusive father. She’s humiliated daily by her welfare-dependant mother who forces her to cook greasy food and perform sexual acts all-the-while telling her she’s worthless. She’s 17 years old and can’t read. Things can get worse, and do.

What’s relevant to medical lessons?

For doctors –

The message of Precious, that every human life has value, should be obvious to every person employed in the health care system. But I know too well that’s not true.

When I was a medical student in 1985, working with a team of surgery residents, we cared for an obese young woman from Harlem who came in with a life-threatening case of pancreatitis. Her internal insulin-manufacturing organ was so inflamed that her entire gigantic abdominal cavity was tender and bloody. During what seemed like an endless operation in the middle of the night I stood and held firmly a retractor as best I could. The next morning and thereafter, when we made rounds, the residents called her “the whale.”

I learned a lot about pancreatitis and surgery that month. But I couldn’t understand how she, my patient, tolerated the team’s attitude. She didn’t seem to mind, perhaps because we saved her life and the care we provided was free. In retrospect, I wonder if maybe, like Precious, she was too-accustomed to disrespect.

Of course, this is an extreme example from 25 years ago. And I know from my experience working for years in a hospital, and in my years as a patient, that most doctors treat most patients with appropriate dignity. But those residents I worked with then are senior practicing physicians now, likely some on the faculty of medical schools. The disposition to disparage patients, more often subtly – in keeping them waiting without good reason, in dismissing their long lists of real concerns, in somehow putting ourselves above them and even, still, occasionally expressing frank contempt for some unfortunate souls still permeates the hospital culture.

For patients –

When Precious is abused, her mind runs elsewhere. She imagines herself, huge body and all, cast glamorously among television stars or dancing with popular singers. She pretends that she’s all right even when she’s not, really. Finally she speaks up for herself, telling a social worker about her predicament.

Ultimately that’s what makes the difference – her confidence in the value of her own bruised life. She recognizes that, despite everything, she’s a full-fledged human deserving better and has the guts to ask for help. By insisting, by knowing, that her life matters, she pushes herself out, if only partly, from the bleakest of circumstances.

If you’re disabled, hurt, wounded, damaged – ask for help when you need it. Respect yourself, as Precious did. That sends a signal to doctors that you value your life, and they should treat you accordingly.

Hopefully they’ll be paying attention.

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