Sickness was a major part of early American life. Many people suffered from poor health their whole lives.
But scientifically valid medical knowledge was limited. The world in 1820 was not a much more comfortable place to fall ill than it had been two hundred years earlier. No one knew about germs or the significance of human contact or insects in spreading disease. Medical theory of the time held that sickness resulted from a body out of balance. It was an idea that went back hundreds of years to Roman physician Galen in the 2nd century. To restore balance, mainstream doctors bled, blistered, and sweated patients to large and often painful degrees. They administered large doses of drugs like calomel, a form of mercury, to purge patients. Doctors chose treatments that caused quick and drastic changes in a patient’s condition, which could be interpreted as progress. Though well-intentioned, these mainstream treatments also caused as much, if not more, pain than the sickness itself. As a result, doctors could rarely offer sick Americans a medical means of getting better.
You'll get a behind the scenes look at medical practices and hospitals, biases doctors have, how their tribulations affect their interactions with patients in bad--and good ways, and what can be done to improve things.
Grey’s Anatomy was not that far off.
Ofri confirms that all those mean jokes they made at the expense of obese patients and drug addicts are du jour in hospitals.
She also talks candidly about politically incorrect stereotypes doctors hold about patients, Asians are stoic, Hispanics: hystrionic.
At the same time, Ofri offers cases where doctors go out of their way to help patients whom they care for. One of Ofri’s patients in the book needs a new heart, but can’t get one because she’s undocumented. Ofri cares for her for eight years trying to make her life as comfortable as possible.
A look at the emotional side of medicine–the shame, fear, anger, anxiety, empathy, and even love that affect patient care
Physicians are assumed to be objective, rational beings, easily able to detach as they guide patients and families through some of life's most challenging moments. But doctors' emotional responses to the life-and-death dramas of everyday practice have a profound impact on medical care. And while much has been written about the minds and methods of the medical professionals who save our lives, precious little has been said about their emotions. In What Doctors Feel, Dr. Danielle Ofri has taken on the task of dissecting the hidden emotional responses of doctors, and how these directly influence patients.
How do the stresses of medical life-from paperwork to grueling hours to lawsuits to facing death-affect the medical care that doctors can offer their patients? Digging deep into the lives of doctors, Ofri examines the daunting range of emotions-shame, anger, empathy, frustration, hope, pride, occasionally despair, and sometimes even love-that permeate the contemporary doctor-patient connection. Drawing on scientific studies, including some surprising research, Dr. Danielle Ofri offers up an unflinching look at the impact of emotions on health care.
With her renowned eye for dramatic detail, Dr. Ofri takes us into the swirling heart of patient care, telling stories of caregivers caught up and occasionally torn down by the whirlwind life of doctoring. She admits to the humiliation of an error that nearly killed one of her patients and her forever fear of making another. She mourns when a beloved patient is denied a heart transplant. She tells the riveting stories of an intern traumatized when she is forced to let a newborn die in her arms, and of a doctor whose daily glass of wine to handle the frustrations of the ER escalates into a destructive addiction. But doctors don't only feel fear, grief, and frustration. Ofri also reveals that doctors tell bad jokes about "toxic sock syndrome," cope through gallows humor, find hope in impossible situations, and surrender to ecstatic happiness when they triumph over illness. The stories here reveal the undeniable truth that emotions have a distinct effect on how doctors care for their patients. For both clinicians and patients, understanding what doctors feel can make all the difference in giving and getting the best medical care.
Ofri adroitly balances presentation of her own experiences and those of others, with research into the emotional aspects of medical practice. The result is a fascinating journey into the heart and mind of a physician struggling to do the best for her patients while navigating an imperfect health care system that often seems to value “efficiency,” measured in dollars and minutes, more than the emotional well-being of either physician or patient.
Students are not just learning medicine during the third year of medical school; they are learning how to be doctors. Despite the carefully crafted official medical curriculum, it is the “hidden curriculum” that drives the take-home messages. The students astutely note how their superiors comport themselves, how they interact with patients, how they treat other staff members. The students are keen observers of how their supervisors dress—and how they may dress down those around them. They figure out which groups of patients can be the object of sarcasm or humor, and which cannot.
On a daily basis, the students witness fear, anger, grief, humiliation—in patients and doctors alike—all of which are largely unacknowledged. They see egos rubbing up against each other, hierarchies at play, bureaucracies in action. They observe that many of the niceties of patient care fall prey to the demands of efficiency and high patient turnover. Much of what they learned about doctor-patient communication, bedside manner, and empathy turns out to be mere lip service when it comes to the actualities of patient care.
I never told anyone about my lapse — not my intern, not my attending physician, certainly not the patient’s family. I tried to rationalize it: the radiologist had caught the bleeding, and no additional harm had come to the patient.
But what if I had discharged the patient? What if I had started her on a medication like aspirin that could have worsened the bleeding? My error could easily have led to a fatal outcome. The patient was simply lucky.
Over the past month, a petition asking the governor of
Minnesota to investigate a research scandal at the University of Minnesota has
been steadily gathering momentum. The scandal in question originated in 2004
with the suicide of Dan Markingson in an AstraZeneca-funded study of
antipsychotics. The petition to investigate the scandal is backed by a number
of high-profile supporters, among them Lancet editor Richard Horton,
former BMJ editor Richard Smith, three former editors of the New
England Journal of Medicine (Marcia Angell, Arnold Relman, and Jerome
Kassirer), Wellesley College historian Susan Reverby, who uncovered the
Guatemala syphilis studies, Hastings Center co-founder Daniel Callahan, and
over 200 scholars in bioethics, clinical research,
medical humanities, and related disciplines.
The petition also has a noticeable gap. Very few signers come from
the University of Minnesota. In fact, only two people from the Center for
Bioethics have signed: Leigh Turner and me. This is not because any faculty
member outside the Department of Psychiatry actually defends the ethics of the
study, at least as far as I can tell. What seems to bother people here is
speaking out about it. Very few faculty members are willing to register their
Why not? Well, there are the obvious possibilities—fear, apathy,
self-interest, and so on. At least one person has told me she is unwilling to
sign because she doesn’t think the petition will succeed. But there may be a
more interesting explanation that I’d like to explore. For those who are
unfamiliar with the scandal, however, let me backtrack briefly and explain the
events in question. (You can read the longer version in Mother Jones magazine
and additional background in a Bioethics Forum post.)
In late 2003, Dr. Stephen Olson, the head of the schizophrenia
program at the University of Minnesota, recruited an acutely psychotic young
man named Dan Markingson into an AstraZeneca-funded research study of
antipsychotic drugs. Olson enrolled Dan despite the fact that he had been
repeatedly judged incapable of giving informed consent, despite the fact that
his mother objected to his participation, and despite the fact that Dan had
been placed under an involuntary commitment order that legally compelled him to
obey Olson’s recommendations. For months, Mary Weiss, Dan’s mother, tried
desperately to get her son out of the study, warning that his condition was
worsening and that he was in danger of committing suicide. Her warnings were
ignored. In May 2004 Dan stabbed himself to death with a box cutter so violently
that he nearly decapitated himself.
The research study itself was plagued by ethical problems: financial
incentives to keep subjects in the study as long as possible, conflicts of
interest for the investigators, an inexplicable gap in the exclusion criteria,
and a questionable scientific rationale. AstraZeneca was eventually forced to
pay $520 million in fraud penalties, and some of its misconduct was traced back to the University of Minnesota.
You might think that events this alarming would prompt a
university investigation. That is not what happened. Instead, the university blocked Mary’s efforts to get Dan’s medical
records, and when her lawsuit against the university was dismissed on grounds
of sovereign immunity, it filed a legal action against her, demanding $57,000
in legal costs. Even as evidence has accumulated suggesting a much larger
problem involving more psychiatric studies and more mistreated
subjects, the university has stonewalled every effort to get to the truth.
Why would faculty members remain silent about such an alarming
sequence of events? One possible reason is simply because they do not feel as
if the wrongdoing has anything to do with them. The University of Minnesota is
a vast institution; the scandal took place in a single department; if anyone is
to be blamed, it is the psychiatrists and the university administrators, not
them. Simply being a faculty member at the university does not implicate them
in the wrongdoing or give them any special obligation to fix it. In a phrase:
no guilt, hence no responsibility.
My view is somewhat different. These events have made me deeply
ashamed to be a part of the University of Minnesota, in the same way that I
feel ashamed to be a Southerner when I see video clips of Strom Thurmond’s
race-baiting speeches or photos of Alabama police dogs snapping at black civil
rights marchers. I think that what our psychiatrists did to Dan Markingson was
wrong in the deepest sense. It was exploitative, cruel, and corrupt. Almost as
disgraceful are the actions university officials have taken to cover it up and
protect the reputation of the university. The shame I feel comes from the fact
that I have worked at the University of Minnesota for 15 years. I have even
been a member of the IRB. For better or worse, my identity is bound up with the
These two different reactions—shame versus guilt—differ in important
ways. Shame is linked with honor; it is about losing the respect of others, and
by virtue of that, losing your self-respect. And honor often involves
collective identity. While we don’t usually feel guilty about the actions of
other people, we often do feel ashamed if those actions reflect on our own
identities. So, for example, you can feel ashamed at the actions of your
parents, your fellow Lutherans, or your physician colleagues—even if you feel
as if it would be unfair for anyone to blame you personally for their actions.
Shame, unlike guilt, involves the imagined gaze of other people.
As Ruth Benedict writes: "Shame is a reaction to other people’s criticism.
A man is shamed either by being openly ridiculed or by fantasying to himself
that he has been made ridiculous. In either case it is a potent sanction. But
it requires an audience or at least a man’s fantasy of an audience. Guilt does
In scandals, this imagined audience can produce very different,
even opposite, reactions. On the one hand, it is what leads many people to try
so hard to keep scandals secret. This impulse to cover up wrongdoing can be
toxic, as the Catholic Church has discovered. But it is also what leads
insiders to speak out publicly against a scandal. By speaking out, you show
that you are separating yourself from the wrongdoing in order to maintain your
honor and self-respect. You are saying to the world, “Do not think that I am a
part of this.”
Shame and honor may seem like old-fashioned ideas, but if you read
the comments left on the petition by University of Minnesota alumni, you cannot
help but be struck by their language. “How shameful for UMN, my alma mater.” “I
am a graduate of the University of Minnesota and want to be proud of my school,
but following this case has made me deeply ashamed.” “I am a University of
Minnesota alum, and I am ashamed of my alma mater right now.” “To call this
merely shameful would be wholly inadequate.” “Attended U of MN Medical School
and then U of MN Psychiatry residency – ashamed of the Psychiatry Department.” “I
am a graduate (CLA, 1981) and ashamed of the way the University continues to
handle this tragic case.” “The University's legal team should also be ashamed
of their behavior in further victimizing this family.”
Obviously, this shame is something I understand, or else I would
not be working so hard to raise awareness of the petition and convince others
to sign on. (You can sign the petition here.) I also believe that the
truth will eventually come out, and when that happens, there will be more than
enough shame to go around. The refusal to investigate will only make things
worse. As Jesse Ballenger writes on the petition, “As a faculty member at a
university (Penn State) now notorious for failing to investigate abuses, I find
the refusal of the University of Minnesota to confront this scandal sadly
Editor’s Note: Beacon Broadside’s editor, Jessie Bennett, is
one of the University of Minnesota alumni quoted above.
New York TimesWellBlog regular contributor Danielle Ofri has been praised for turning the triumphs and trials of medicine into riveting and compassionate stories. This eBook exclusive edition offers 98 pages of her best work for $3.99.
This eBook original exhibits Danielle Ofri's range and skill as a storyteller as well as her empathy and astuteness as a doctor. Her vivid prose brings the reader into bustling hospitals, tense exam rooms, and Ofri's own life, giving an up-close look at the fast-paced, life-and-death drama of becoming a doctor. She tells of a young man uncertain of his future who comes into the clinic with a stomach complaint but for whom Dr. Ofri sees that the most useful "treatment" she can offer him is SAT tutoring. She writes of a desperate struggle to communicate with a critically ill patient who only speaks Mandarin, of a doctor whose experience in the NICU leaves her paralyzed with PTSD, and of her own struggles with the fear of making fatal errors, the dangers of overconfidence, and the impossible attempts to balance the empathy necessary for good care with the distance necessary for self-preservation. Through these stories of her patients, colleagues, and her own experiences, Intensive Care offers poignant insight into the medical world, and into the hearts and minds of doctors and their patients. These stories are drawn from the author’s previous books and one is from her forthcoming book, What Doctors Feel: How Emotions Affect the Practice of Medicine.
Praise for Danielle Ofri
“The world of patient and doctor exists in a special sacred space. Danielle Ofri brings us into that place where science and the soul meet. Her vivid and moving prose enriches the mind and turns the heart. We are privileged to journey with her from her days as a student to her emergence as a physician working among those most in need.” —Jerome Groopman, author of How Doctors Think
“A gifted storyteller … Ofri describes how her patients’ histories stirred her to practice medicine more compassionately, inspired her with their hope and fortitude.” —Sarah Halzack, The Washington Post
“Danielle Ofri is a finely gifted writer, a born storyteller as well as a born physician, and through these … brilliantly written episodes covering the years from studenthood to the end of her medical residency, we get not only a deep sense of the high drama of life and death that must face anyone working in a great hospital but a feeling for the making of a physician's mind and soul, and for her bravery and vulnerabilities as she goes through the long years of apprenticeship.” —Oliver Sacks, MD, author of Awakenings and The Man Who Mistook His Wife for a Hat
“Danielle Ofri stands observing at the crossroads of the remarkable lives that intersect at Bellevue. She is dogged, perceptive, unafraid, and willing to probe her own motives, as well as those of others. This is what it takes for a good physician to arrive at the truth, and these same qualities make her an essayist of the first order.” —Abraham Verghese, author of The Tennis Partner and My Own Country
“Dr. Ofri is an exemplary model of professional compassion. Her beautiful stories linger at the curtains of disease, of class and culture of life, and of inevitable death. The stories challenge us to create new narratives of caring and listening.” —Bruce Hirsch, Tikkun
“Danielle Ofri has so much to say about the remarkable intimacies between doctor and patient, about the bonds and the barriers, and above all about how doctors come to understand their powers and their limitations.” —Perri Klass, MD, author of A Not Entirely Benign Procedure and The Mercy Rule
“Her writing tumbles forth with color and emotion. She demonstrates an ear for dialogue, a humility about the limits of her medical training, and an extraordinary capacity to be touched by human suffering. . . . an important addition to the literary canon of medicine.” —Jan Gardner, The Boston Globe
Carl Elliott is the author of White Coat, Black Hat: Adventures on the Dark Side of Medicine. Elliott is a professor at the Center for Bioethics at the University of Minnesota. His work has appeared in The New Yorker, Atlantic Monthly, the Believer, Slate, the London Review of Books, and theAmerican Prospect. His six previous books include Better Than Well, Prozac As a Way of Life, Rules of Insanity, and A Philosophical Disease.
Another spectacular winter morning in Dunedin, New Zealand. Clear blue sky, frost on the ground, lush green hills plunging into the South Pacific. It is hard to complain about the setting, still less about the kindness and decency of the inhabitants. It has been nearly 22 years since my wife and I first landed in Dunedin, in August of 1990, when I began a postdoctoral fellowship at the newly established Bioethics Centre at the University of Otago. I still wonder why we ever left.
It was an extraordinary time for bioethics in New Zealand. In 1990, the country was still reeling from the shock of a medical research scandal—the “unfortunate experiment” at the National Women’s Hospital in Auckland. In that study, which had begun in 1966 and continued for another two decades, Dr. Herbert Green, an obstetrician-gynecologist, deliberately withheld treatment of 160 women with abnormal cervical smears in an effort to prove his misguided hypothesis that the cervical abnormalities would not lead to cervical cancer. Green enrolled women in the study without their knowledge or consent. Three of Green’s colleagues at Auckland University, Bill McIndoe, Jock McLean, and Ron Jones, tried to put a halt to the experiment for years, but they were ignored until they published a 1984 article in Obstetrics and Gynecology showing that the untreated women were 25 times more likely to develop invasive cancer. According to the Cartright Inquiry, the governmental commission set up to investigate the scandal, this amounted to a total of approximately 40 women developing invasive cancer, many of whom died.
The Medical Council of New Zealand eventually brought disciplinary action against Green and his superior, Dr. Denis Bonham. While the charges against Green were dropped because of Green’s poor health, the Council found Bonham guilty of disgraceful conduct. More importantly, the results of the Cartwright Inquiry led to dramatic changes in the oversight of medical research in New Zealand—among them the establishment of regional ethics committees, the creation of an Office of Health and Disability Commissioner, a code of rights for health consumers, and the appointment of an independent patient advocate at Auckland Women’s Hospital. Many of my friends and colleagues at the University of Otago were involved in the Cartwright Inquiry and its aftermath, perhaps most notably Dr. Charlotte Paul, who served as a medical adviser.
Two decades later, it is hard for me to avoid contrasting the ”unfortunate experiment” in Auckland to the psychiatric research scandal at the University of Minnesota, where I work now. The circumstances surrounding the suicide of Dan Markingson in an AstraZeneca-sponsored clinical trial of Seroquel were very different from those in Auckland, yet they were no less shocking: a floridly psychotic young man under a commitment order, who had been repeatedly judged incompetent to make his own medical decisions, was coerced into a highly profitable, scientifically dubious clinical trial over the objections of his mother, whose desperate warnings were subsequently ignored until the young man finally stabbed himself to death.
The two scandals have some similarities. In both cases, the wrongdoing was brought to public attention not by regulators or oversight bodies, but by journalists. The “unfortunate experiment” in Auckland was brought to light by Sandra Coney and Phillida Bunkle in Metro magazine, while Paul Tosto and Jeremy Olson exposed the Markingson scandal in the St. Paul Pioneer Press. Also, in both cases, the scandals were symptomatic of deeper ethical pathology. At the National Women’s Hospital, medical students had been performing vaginal examinations on anesthetized women without their knowledge, and house staff had practiced inserting and removing IUDs on anesthetized women before their hysterectomies. At the University of Minnesota, administrators have repeatedly covered up or minimized questionable financial dealings and conflicts of interest, even in the face of sustained public scrutiny. (See this, this, this, this, and this.)
Most importantly, administrators at both institutions downplayed or ignored the warnings of their own faculty members. In late 2010, after my article about the Markingson case appeared in Mother Jones, several University of Minnesota faculty members and I wrote a public letter to the board of regents asking for an external investigation. In February 2011, when the regents refused our request, Dr. Aaron Friedman, the Dean of the Medical School and Vice-President for Health Sciences, sent an email to the faculty making it clear where he stood on the matter. “As a result of this case, our department of psychiatry has experienced significant scrutiny and withering criticism over the past five years, and through it all, the faculty of the department have performed remarkably well in fulfilling its mission,” Friedman wrote. He went on to praise the psychiatrists behind the trial in which Markingson died, Dr. Stephen Olson and Dr. Charles Schulz, and to voice his strong support for industry-funded research. As for the death of Markingson, Friedman wrote, “I see the Regents’ statement as the end of the University’s review of this specific patient’s case.”
Here is where the responses to the Markingson case and to the “unfortunate experiment” differ. In Auckland, the Metro article by Coney and Bunkle set off a national debate, and eventually, sweeping reforms. These reforms came about in part due to the refusal of many New Zealand academics, physicians, and feminist activists to let the matter die. But at Minnesota, the forceful responses by Friedman and the general counsel, Mark Rotenberg have successfully silenced internal dissent at the university.
This silence is understandable, but unfortunate. The issues at stake go well beyond the death of Dan Markingson. If more research deaths are uncovered, will the faculty at the University of Minnesota be able to say, “We did all we could to prevent them”?
Carl Elliott is the author of White Coat, Black Hat: Adventures on the Dark Side of Medicine. Elliott is a professor at the Center for Bioethics at the University of Minnesota. His work has appeared in The New Yorker, Atlantic Monthly, the Believer, Slate, the London Review of Books, and theAmerican Prospect. His six previous books include Better Than Well, Prozac As a Way of Life, Rules of Insanity, and A Philosophical Disease.
In June, I will be returning to Washington for the annual Pharmed Out conference, a project located at Georgetown University Medical Center. It is one of my favorite events of the year, in part because of the wide array of academics, journalists, and activists who attend, but mainly because of its extraordinarily committed, outspoken director, Dr. Adriane Fugh-Berman, and her merry band of student volunteers. Adriane agreed to an interview by email.
Would it be fair to say that your project was funded by a felony?
Yes, we were funded by the Attorney General Consumer and Prescriber Grant program, a novel and never-to-be-repeated program that resulted from a settlement between Pfizer and all 50 states and the District of Columbia. We promised so much that before we got the grant, the grant administrators asked us to cut down what we promised to do. We refused — and in the end, we exceeded what we promised.
Just by chance, we had begun our project by shooting an interview of Shahram Ahari — a former drug rep for Eli Lilly who is now a medical student — talking about how he had sold Zyprexa. That was just days before the story broke in The New York Times about how Lilly hid data about adverse effects. Jim Ridgeway, the investigative reporter and filmmaker we worked with, realized that what we had was newsworthy and insisted that we release a quickly edited video clip. We didn’t even have a phone line yet, let alone a Web site. So we released the video on YouTube, crediting the not-yet-existing PharmedOut, with Georgetown’s media office as the contact number. It received a lot of media attention. The video “Zyprexa Drug Rep” has been viewed more than 150,000 times.
Since then, we’ve done novel research on, for example, promotional tone in medical journal articles, and how marketing messages are inserted into CME. We created the first educational module that has convinced physicians that they are personally affected by promotion. And we’ve had groundbreaking conferences, the third of which will be held at Georgetown on June 14-15. It’s called “Missing the Target: When Practitioners Harm More Than Heal,” and will cover the potential adverse effects of marketing drugs and medical devices.
How did you get started as an activist?
I came out of women’s health advocacy work, and we were fighting medicalization of childbirth, menopause, and menstruation, so I feel I always had that bent. Being a reformer suits my crabby nature.
I come from a family of utterly fearless women. I’m the most cautious, but apparently still less afraid than most. My parents were both anti-Vietnam war activists. My mother was very active with Women’s Strike for Peace, and met with Vietnamese women in Djakarta. My brother was president of SDS [Students for a Democratic Society] at Rutgers. I think I learned to walk at demonstrations.
I got involved in feminism, women’s health, worked at Planned Parenthood as a teen, then a reproductive health clinic as a counselor and medical assistant. I would sometimes ask docs to treat women who couldn’t afford care. I decided it would be easier to become a doc then beg docs to help people. Anyone who hasn’t been through medical training romanticizes medicine; med school and internship were so tough in unexpected ways.
I know exactly what you mean, but maybe you should explain.
Med school was anti-intellectual and inhumane. First there was the vast quantity of mind-numbing rote memorization of largely irrelevant material in the basic-science years, followed by the clinical years, in which we learned tradition, myth, and ritual. The overwhelming amount of material in the preclinical years makes students pine for shortcuts. No wonder they’re ripe for the simplistic, definitive messaging of drug reps later. Third year was one long hazing ritual; then in fourth year we were accepted into the fold. And in gratitude, we would accept and perpetuate the whole dehumanizing training system.
Questions were punished. Empathy for patients was discouraged. I was horrified that there seemed to be no connection between medicine and public health, and only a tenuous connection between medicine and science. (Whenever docs are caught out doing something nonscientific, they say, medicine is an art, not a science.) And only lip service was paid to the concept of patient autonomy, or making medical decisions in the context of a patient’s own life and values.
So when they removed your soul in medical school, did it hurt? I was under the impression that soul extraction was a pretty simple procedure, but to be honest, I found it excruciatingly painful.
Yeah, they need to work on the informed consent for that procedure.
I think all of us found ourselves doing things or thinking things we would not have imagined being capable of. Being deprived of sleep, food, and the company of loved ones is terrible for the soul. I remember reading an account of a hungry, exhausted intern who wolfed down the dinner of a patient who had just died. No physician would be proud of that, but we would all understand it. We need to change the training system. Physicians-in-training who are treated compassionately will treat their patients with compassion. Medical training is changing, but not fast enough.
Can you think of any particularly bad moments that seem emblematic to you?
The interns discussing how we envied patients because they were lying in bed and eating and watching TV. It’s terrible looking back on how distorted our thinking was. One of my internship mates ended up in a mental institution; another intern attempted suicide. Standing in a supply cabinet looking for a kit to cath someone who hadn’t peed in 18 hours and realizing, “Hey, I haven’t peed in 18 hours either.” On a psych rotation, handing out an account of a patient permanently damaged by electroconvulsive treatment to fellow students and having them hand it back, saying, “I don’t want to hear the other side if it involves more reading.” Being criticized for putting my arm around a pregnant teen on the way to the exam room. Realizing that preference in IV fluids or antibiotics varied by medical specialty as opposed to patient or disease characteristics. The utter exhaustion — falling asleep on a bus to my clinic for four hours, as the bus crisscrossed the Bronx. The guy I lived with didn’t make it home one night because he fell asleep on a dumpster at a subway station.
What about your writing? When did that start, and how?
I always wrote. I come from a family of writers and activists. Words were important. My father was a professor working on his fourth book on American government when he died at age 39. My mother wrote as well — a column for a small newspaper, letters to the editor. She would have written more had she not been left widowed and penniless with a nine-year-old and a 19-year-old. She never finished a cookbook she started, but my brother, a chef, later wrote one. I was made to write letters as a child, and my family wrote letters to each other. I remember coming home once to an eight page screed from my mother unfurling from a kitchen cabinet.
Anyway, my mother went into the restaurant business, which she ran like a social-service agency. She hired a busboy too damaged to speak, poor single mothers, a prostitute from Chinatown. She brought in chefs from China. Our restaurant launched many others in DC. She was so generous to everyone. We never had money, but we had lots of fun and ate like kings. Food, in my family, was the most important thing. My grandmother believed you should be able to recreate any dish you taste. Not that she deigned to make much non-Chinese food. She did make a great apple pie, from sour, quarter-size apples from a tree in her backyard. I didn’t realize that she had learned to make apple pie in some YWCA American acculturation course she took after coming to the U.S.. As a child I thought apple pie was a Chinese dish. The day my grandmother made a bad dish was the day we knew she was dying.
How have you managed to keep Pharmed Out going?
Those of us who started the project came out of nonprofit groups so we knew how to work crazy hours, convince volunteers to work harder for free than they ever worked for pay, and stretch a penny until it screams. We have an incredibly smart, savvy, responsive, creative team.
Our strength has always been the industry insiders who have provided us invaluable information on marketing practice, and the utter dedication of the doctors, scientists, students, artists and all the individual donors — who have kept the project going despite our having no external funding support since 2008. Every single person whom I paid off the initial grant continued to volunteer for the project after the money ran out. Our Web master supported the site for years; every academic stayed on. Even our work-study student continued to work for free after our funds ran out. Our fabulous anonymous team is what makes this project great. Because so many team members — not just industry — must remain anonymous, we made a decision not to name those team members who could be named. Our staff has been phenomenal. Alicia Bell, now a med student at the Medical College of Virginia, was the founding staff-person who became an amazing colleague over our first four years; without her we would not have achieved the impact we did. Beth Johnson and Nicole Dubowitz have also been great. But every one of our projects is a team effort. As director, I get way too much credit. I have a brilliant, efficient team that reminds me often of one of my mother’s favorite quotes: “The difficult with ease, the impossible with time.”
A couple of years ago, Beacon Press published White Coat, Black Hat: Adventures on the Dark Side of Medicine, a book that Lauren Slater recommended as "required reading for anyone who has ever been a patient—in other words, for everyone." In WCBH, author Carl Elliott skewers drug-industry reps, exposes how Pharma companies ghost-write "scientific" research studies in support of their products, and introduces us to the world of human guinea pigging--a "career" path for those desperate enough to serve in drug study after drug study in exchange for mediocre pay and few benefits.
Carl sent me an email this week to tell me he had just returned from the Tribeca Film Festival, where he had attended screenings of Off Label, a new film "for which my writing is given credit as the inspiration." He put me in touch with filmmakers Michael Palmieri and Donal Mosher, and I spoke with them via Skype as they were getting ready to leave New York. If you're familiar with WCBH and Carl's other writing in The New Yorker, Mother Jones, The Chronicle's Brainstorm blog, and elsewhere (including Beacon Broadside), you will certainly recognize the themes and people in the film. If you haven't read the book yet, get to it! And keep an eye out for screenings of Off Label. --Jessie Bennett, Blog Editor
Jessie Bennett: What is Off Label about?
Michael Palmieri: It's a film that examines the medicated margins of American society, and it does that initially through human guinea pigs. But it's personal stories of these people, so we're interested in the personal ramifications of the pharmaceutical culture that we live in, and how we're all sort of implicated in that process.
JB: How did you come to make a film about human guinea pigging?
MP: We were showing a rough cut of our first film, October Country, at a film festival in late 2008, and these two producers--Anish Savjani and Vincent Savino, who we ended up working with--they saw the film and they followed up with us and said, "Hey, would you guys be interested in making a film about human guinea pigs? " And we said, "Yeah, sure, maybe. It sounds interesting..."
Donal Mosher: And they said they had money.
MP: Yeah, they said they had money, and we said, "Okay, sure!" They actually did have a budget to make it, and it was an intriguing subject, but we didn't know if it could become a whole film. It seemed to us initially like a 60 Minutes-length, investigative reporting piece more than what we're interested in doing, which is a broader view of a subject or a viewing from sort of left field. But the first articles they showed us were Josh McHugh from Wired magazine ["Drug Test Cowboys: The Secret World of Pharmaceutical Trial Subjects"] as well as Carl's article called "Guinea-Pigging" [The New Yorker], which we really latched on to. We really liked the way he wrote the piece. So we ended up contacting him and discussing what we were doing, and he gave us more leads, more information. We eventually ended up meeting him. It kind of developed organically from there. "Guinea pigs" was the initial interest, but then we expanded the idea once we understood on a deeper level what was going on that was somewhat suspect in the guinea pigging world. If the testing is messed up, then what's messed up about the marketing? And what are the end results?
DM: We also began to see how the issue didn't just lie in the zone of the issue itself, but it was pervasive. Every time we'd have a conversation with someone, they had a relative or they themselves were on pharmaceuticals. And the stories were multiplying in a way that made us think this is an issue that pervades many layers of culture far beyond medicine or taking medicine itself. So we wanted to start working those ideas into the film.
JB: Who were some of the subjects that you spoke with? I recognized a few of the characters from Carl's writing.
DM: Originally we spoke with Bob Helms [of Guinea Pig Zero]. A lot of the well-known names in the human guinea pig scene, the people who are testing the drugs. And then from there, we moved on to Mary Weiss, who is also in Carl's writing.
MP: Robert Helms was in the original article that Carl wrote for the New Yorker. So we contacted him and spent time with him, and while we were in Philadelphia, Donal had initiated contact with a writer who had written a book called Acres of Skin, which gave us Eddie Anthony's story. He was an inmate in a prison at Holmesburg when it was actually legal to conduct medical testing on prisoners. And it really screwed up his life because some rough tests occurred when he was in there. We had initiated contact with Paul Clough through his website [Just Another Lab Rat]. Paul is based in Austin, but he has a website very much like what Robert Helms has with his fan zine Guinea Pig Zero, set up for people in the guinea pigging community to speak with one another and share. "Oh, this test actually pays good money." "These people have terrible food." It's kind of amazing, because these people are doing this for a living.
JB: This is the thing that really shocked me about White Coat, Black Hat. "There's a human guinea pigging community?"
MP: And beyond that, it's a community of people who have no... there's no health plan for them. They're doing this because they don't have any other option. But for us, we could clearly understand that the testing is somewhat dubious on certain levels. I mean, obviously we need tests, there's a lot of positive, real things that come out of that testing. But people are lying to get into studies, and it's not exactly as clean of a population study as you would think it is. So the results are going to be skewed. Once we saw, "Okay, skewed results," we started moving more towards marketing, and we were introduced to [former pharmaceutical representative] Michael Oldani, through Carl. Again. Which is why, in a certain sense... how did we say it now? Not dedicated...
DM: "Inspired by."
MP: The film is truly inspired by Carl's writing. It's not just the characters that he led us towards, of which I think he led us toward five of the eight characters. But it's the endless numbers of hours spent with him in Minneapolis. At a coffee shop, where we would meet to discuss something, and we'd look at our watches and eight hours had passed. It's the types of conversations you dream to have all the time. We just got to know each other really well, and his style of writing is so expansive, and it moves from one idea to the next idea. He's such a big brain on a stick, you know what I mean? We wanted to try to do something like that with this film, that followed a line of reasoning as opposed to a specific plot. As a means to take in all of the complications of the issue that we were examining. But rather than having it point a finger at pharma and say, "This is the bad guy, and this is the problem." Which is the "call to action" documentary. We wanted to make a film that was a call to reflection, which is what Carl's writing is like, or the feeling at least that we got from it.
JB: Mary Weiss, the mother of the test subject who died in Minnesota, who Carl writes about in WCBH, is featured in the film. Can you tell us about her story?
DM: In short, she attempted to get her son into a mental hospital. And when she couldn't, she found him space at the University of Minnesota. At first, he was assessed that he couldn't make any rational judgment about his own medication--that he wasn't sane enough. And then, within twenty-four hours, that was reversed. The full details of the story are in an article that Carl wrote for Mother Jones, but essentially it was a doctor who placed his own psychiatric patient in a very lucrative testing study. Not a study testing the efficacy of the drug that was prescribed for this young man, but a comparison marketing study where the dosage was fluctuating. The result was an incredibly sad and grisly suicide. From that point on, his mother has been fighting to change Minnesota laws, and to make those changes nationally.
MP: And to clarify, this happened at the University of Minnesota, where Carl works. And the study that Dan Markingson was entered into was not only a marketing study, but it was a study that was conducted by the same doctor who was his attending physician. So the conflict of interest was so obvious in this case, but it was still legal. So Mary Weiss has helped pass the law to make that illegal.
JB: You just finished up at the Tribeca Film Festival. How did it go?
MP: It went great. We showed the film four times. We finished yesterday, and the screenings were all pretty full. Carl was there for the first two screenings, with a couple of other people from the film. We are kind of thrilled with the response. It's gotten some fantasticreviews as well. So we're really happy.
JB: How was the audience reaction to the film in Tribeca?
MP: I usually read it from the perspective of, "How many people left during the credits who didn't want to stick around for the Q&A?" An overwhelming number of people stuck around, which was a good sign to begin with, but the questions, they kept coming until they had to kick us out of the theater. So people are, I think, really engaged with the film. Everyone seems to be invested, so we're really happy. And if it causes people to pause and think about what medicine is going inside their bodies, I think we have succeeded, at least on that level, and it makes us very happy.
JB: And where are you headed next?
MP: We're headed to HotDocs in Toronto, where the film is premiering internationally. The Toronto documentary crowd is insanity. We've already sold out most of our screenings, and they're gigantic places. We're looking forward to that. And we're hoping that there's a lot of European interest in screening the film.
JB: Well, it's an international issue.
MP: But it's a very American film, so we're curious to how Europe responds.
DM: We're really curious to see, when there's an international audience, what stories they give us about the situation in whatever country the film might land.
JB: And you have a screening in San Francisco as well?
“The author’s clear rending of the tough questions surrounding this knotty topic should make it required reading for anyone touched by this issue.” Kirkus Reviews
Over the last two decades, we have seen a dramatic spike in young people taking psychiatric medication. As new drugs have come on the market and diagnoses have proliferated, prescriptions have increased many times over. The issue has sparked heated debates, with most arguments breaking down into predictable pro-med advocacy or anti-med jeremiads. Yet, we've heard little from the "medicated kids" themselves.
In Dosed,Kaitlin Bell Barnett, who began taking antidepressants as a teenager, takes a nuanced look at the issue as she weaves together stories from members of this "medication generation," exploring how drugs informed their experiences at home, in school, and with the mental health professions.
For many, taking meds has proved more complicated than merely popping a pill. The questions we all ask growing up-"Who am I?" and "What can I achieve?"-take on extra layers of complexity for kids who spend their formative years on medication. As Barnett shows, parents' fears that "labeling" kids will hurt their self-esteem means that many young children don't understand why they take pills at all, or what the drugs are supposed to accomplish. Teens must try to figure out whether intense emotions and risk-taking behaviors fall within the spectrum of normal adolescent angst, or whether they represent new symptoms or drug side effects. Young adults negotiate schoolwork, relationships, and the workplace, while struggling to find the right medication, dealing with breakdowns and relapses, and trying to decide whether they still need pharmaceutical treatment at all. And for some young people, what seemed like a quick fix turns into a saga of different diagnoses, symptoms, and a changing cocktail of medications.
The results of what one psychopharmacologist describes as a "giant, uncontrolled experiment" are just starting to trickle in. Barnett shows that a lack of ready answers and guidance has often proven extremely difficult for these young people as they transition from childhood to adolescence and now to adulthood. With its in-depth accounts of individual experiences combined with sociological and scientific context, Dosed provides a much-needed road map for patients, friends, parents, and those in the helping professions trying to navigate the complicated terrain of growing up on meds.
Kaitlin Bell Barnett is a journalist and blogger based in Brooklyn. She also blogs about the experiences of young people taking psychiatric drugs at PsychCentral.
Her work has appeared in the New York Observer, Parents, the Huffington Post, Berkshire Living, Gastronomica, Prevention, InTheFray, Hungry, the Brooklyn Rail, and the Boston Globe, among other publications.
Kaitlin grew up in Williamstown, Massachusetts, and attended Columbia Journalism School and Dartmouth College, where she served as executive editor of the independent daily student newspaper. From 2005 to 2007, she worked as a reporter at the Monitor, a daily newspaper in McAllen, Texas, on the Mexico border. There, she covered city government, politics, schools, crime and general assignments.
Kaitlin Bell Barnett is the author of Dosed: The Medication Generation Grows Up. She is a freelance writer whose articles have appeared in numerous national and regional outlets, including the Boston Globe, New York Observer, Parents, and Prevention. This piece originally appeared at Huffington Post.
Journalists love declaring that psychiatric medications symbolize some slice of the zeitgeist. So I can't say I was entirely surprised when I opened my mailbox the other day and saw New York magazine's cover article proclaiming that "If the 90s were the decade of Prozac, all hollow-eyed and depressed, then this is the era of Xanax, all jumpy and edgy and short of breath."
Translation: Depression is out, anxiety is in, antidepressants are passé (Statistics showing continued robust usage be damned), and anti-anxiety benzodiazepines, around since the 60s, are trendy again, the perfect no-commitment chill pills for a nation of "panicked strivers" contending with a new age of anxiety but without time or inclination to commit to actually changing their lives or going to therapy.
How convenient, I thought. My psychiatric problems -- and corresponding psychopharmaceuticals -- match up with the trends! First I was depressed and angsty and got Prozac, then I got anxious and got benzos! Of course, I happen to be getting depressed again lately, but one can't be completely on-trend all the time.
In fact, if you didn't know me better, you might well mistake me for one of the "functionally anxious" types who dominate journalist Lisa Miller's New York story, rather than the sort of person she quickly shuffles off into another category altogether -- the people with an actual, you know, anxiety disorder.
The people without anxiety disorders who do populate the New York piece are the sort most of us love to hate, but also can't resist reading about in these sorts of articles: Manhattanite professionals who in the Annie Hall era would have been called "neurotic" but who now like to describe themselves as "super stressed," like it's a badge of honor.
According to the article, they're turning more often these days to drugs like Xanax or Ativan when anxiety from their legitimately high-pressure lives gets to be too much. Prescriptions of these drugs, collectively referred to as benzodiazepines, are up 17 percent since 2006. The article does not mention that prescriptions for other psychiatric medications have increased, too -- antidepressant use in adults grew nearly 30 percent between 2001 and 2010 at Medco, one of the nation's largest pharmacy systems, and atypical antipsychotic usage grew a staggering 350 percent. Writing the New York article with a different thesis in mind, one could contend that we're all demoralized over the stalled economic recovery and turning to antidepressants -- or that we're frustrated and adding antipsychotics to our antidepressant regimens to give them a boost.
But back to benzos and anxiety.
The article makes it sound as though it's terribly easy to distinguish between the ordinary, high-functioning people who turn to benzos every so often when the stress of their lives overwhelms them and the people with diagnosed anxiety disorders. In fact, it can be quite complicated -- and that's why psychiatrists are fighting so bitterly over the definitions of the various disorders to be included in the DSM-5, the profession's diagnostic manual, which is under revision and due out in May 2013.
Doctors are curiously absent from the New York piece, though they are, of course, the ones responsible for actually doling out the prescriptions for benzos and all other drugs. They are quite rightly very concerned about how to determine which anxiety is pathological and overwhelming and warrants such a drug, and which kind might be better dealt with through other means.
This is a subject that has been troubling the medical profession for decades, In the 70s and 80s, benzodiazepine misuse became enough of a public health problem to prompt doctors to cut down on prescribing -- and publish a lot of anguished articles on the subject in medical journals. Some of the increase in use the New York article discusses may even reflect a return in doctor's attitudes to more comfort prescribing the drugs after years of shying away from them. (Recent articles in trade publications have made a case for their judicious use.)
All this difficulty distinguishing the casual users from the truly stricken lies in the nature of the conditions for which benzos are typically prescribed. Although sometimes given in high doses as sedatives to seriously agitated patients in psychiatric hospital settings, they are more commonly given to people whose anxiety is self-described and not necessarily readily observable to the doctor. This is true even when we are talking about anxiety of the sort that impairs people's day-to-day functioning, as opposed to the kind Miller focuses on in her New York article, which we might call the "just as easily dispatched with a glass of wine variety."
Anxiety is a funny thing, because although it seems the most all-consuming and obvious thing in the world when you are experiencing it, in fact it's actually quite difficult to detect. When I've been at my most anxious, I suspect that I've struck my psychiatrists and therapists as, at most, a bit agitated. Perhaps they've noticed some circles under my eyes, or that I look a little thin. Conceivably, I would talk a little faster than usual, or my eyes would dart around the room. But they have told me that, frankly, I don't seem all that different. I put on a good façade of normality.
In contrast, here is what I do experience: When I arrive at the psychiatrist for a "med check," I won't have slept a solid eight hours in weeks. I will have awoken early every morning with a jolt, my heart racing at some threat I can't place. It will continue that way all day until I go to bed. My stomach will churn and the room will spin and I'll be unable to eat. My thoughts will race from one unarticulated worry to another. I will feel desperate for companionship yet unable to listen or focus on conversation. I will feel constantly on the verge of tears. But I would have to tell my doctor all of this. She is not likely to go offering me a benzodiazepine prescription on the basis of some dark circles and a little hurried speech.
Once procured, such a prescription usually works magic, however. During the three periods of sustained anxiety I've suffered, I have taken a small dose of Klonopin, a long-lasting benzo, every few hours, as a way of keeping a steady level in my system. I've also taken it many other times when I've felt my anxiety flare on isolated occasions.
Despite the drug's effectiveness -- or perhaps because of it -- I never feel good about taking it. When my anxiety is pervasive, I need to constantly watch for a resurgence of panic. This makes me feel dependent, like a drug addict eyeing the clock for my next hit. When my anxiety returns in isolated episodes, I wonder if I'm simply the equivalent of the functionally anxious people in the New York article -- someone who happens to have a Klonopin prescription but who really doesn't need to be taking it and could just as well go to a yoga class. I tend to feel guilty about it until I get the telltale early morning waking -- and then I start to worry that I'm entering another terrible extended anxious phase.
The other reason articles like the one in New York make me cringe is that benzos, being controlled substances, already carry the taint of misuse, and talk of overworked PR execs popping pills to deal with anxiety over a work presentation or helicopter moms doing so to handle separation anxiety from their preschoolers is likely to make doctors, already cagey about prescribing, even more so.
Even for those of us with an anxiety disorder diagnosis and a history of benzo prescriptions, there's already an awkward dance involved in procuring a refill. Since benzos are controlled substances, doctors can't call in prescriptions (and may not have emergency appointments available go hand over the precious slip of paper). Anxiety, however, has a tendency to spiral -- and quickly. Many people find it useful, therefore, to have a bottle around in case of an emergency. But that means requesting a refill when you are not, technically, quaking under the covers in a fetal position.
Some doctors are sensitive enough to realize this, but, wanting to avoid tolerance and misuse, the responsible ones generally don't go around offering up refills out of the blue. For many people, especially young people in their 20s and 30s, who happen to be the group most likely to abuse psychotherapeutic prescription drugs according to federal government statistics, this makes asking for refills a delicate and awkward affair. I'm sure that my requests, for example, are accompanied by far too much justifying. One young woman I interviewed for my book on the topic of growing up on psychiatric medication suffered from debilitating anxiety and was so terrified of being judged an addict (She had a family history of alcohol abuse) that she refused to ask for benzo refills at all. This, even though it was patently obvious from the most casual encounter with her that some benzos would have done her good.
After my last psychiatrist's appointment, during which my doctor upped the dosage of my antidepressant to deal with a creeping recurrence of my depression, she ended the appointment by asking what I was doing for the rest of the day. I told her I was working on a column responding to the apparent news that benzodiazepines were the hot new drugs. She rolled her eyes as though this were the height of ridiculousness. "Benzodiazepines are the hot new drugs? Since when?" She did not ask if I would like a refill on my Klonopin.
Carl Elliott is the author of White Coat, Black Hat: Adventures on the Dark Side of Medicine. Elliott is a professor at the Center for Bioethics at the University of Minnesota. His work has appeared in The New Yorker, Atlantic Monthly, the Believer, Slate, the London Review of Books, and the American Prospect. His six previous books include Better Than Well, Prozac As a Way of Life, Rules of Insanity, and A Philosophical Disease.
If Texas ever decides to secede from the Union, I’d be mighty tempted to go along. Lightnin’ Hopkins, Molly Ivins, Bob Wills, Kinky Friedman, the 1966 Texas Western basketball team: Without the Lone Star State, American life would look pretty anemic. When Steve Earle declared, “Townes Van Zandt is the best songwriter in the whole world and I’ll stand on Bob Dylan’s coffee table in my cowboy boots and say that,” I nodded and said, “Amen.”
Most of all, I like Texas crazy. There is no better value for your entertainment dollar. As a native South Carolinian, I claim some expertise in the topic. My brother says: What Mississippi is to the poverty index, South Carolina is to the index of crazy people. (Our unofficial state motto, provided by James L. Petigru in 1860: “South Carolina is too small to be a republic, and too large to be an insane asylum.”) For many years now, my Texan friend Kathryn Montgomery and I have had a contest over which state has a higher proportion of crazy people, and for many years, thanks to our remarkable politicians, South Carolina has been flat-out killing it. Over the last few months, however, Texas may have pulled ahead.
The reason is stem-cell tourism. It started when Gov. Rick Perry had a surgeon friend treat his back problems with adult stem cells processed by RNL Bio, a South Korean company famous mainly for its commercial puppy cloning business and “cosmeceutical” preparations such as Dr. Jucre’s Million Stem Cell Magic Concentrate (available online for $1,220.) Pretty soon an entire stem-cell operation called Celltex Therapeutics was up and running, partnered with RNL Bio and backed by a group of Texas oil and gas investors. Unfortunately for the company, there has been a minor bump in the road called “medical research.” Reputable stem cell researchers say there is little medical evidence to show that adult stem cells are effective for the conditions they are supposed to treat (which, according to a RNL Bio spokesperson, range from wrinkles to Alzheimer’s disease). Even worse, the cells may be dangerous. As Paul Knoepfler, a stem cell researcher at UC Davis pointed out recently, “The worst case scenario, even for autologous transplant, is death. The second worse case scenario is severe, life-changing injury.”
You don’t need a marketing degree to understand that “death” and “severe, life-changing injury” are not going to sell a lot of stem cells. So those words don’t appear in the patient testimonials RNL Bio uses to market its services. In fact, the stem cell treatments are illegal in South Korea, where RNL Bio is based, so the company partners with facilities in other countries such as China and Japan to exploit regulatory loopholes. Patients with debilitating chronic illnesses can travel to those countries for stem-cell treatment. Last week, we learned from Nature that Texas has joined that list of countries. A Houston doctor told a Nature reporter that he is paid by Celltex to give adult stem-cell treatments to patients with multiple sclerosis and Parkinson’s disease, who may be charged up to $25,000.
A few months ago, I had reason to hope that South Carolina might be making a comeback in the craziness sweepstakes. An assistant professor at the Medical University of South Carolina was arrested by the FBI for supplying adult stem cells to an illegal operation in Mexico. But my hopes fell when I read the FBI press release. His co-conspirators, unfortunately, were from Texas.
Carl Elliott is the author of White Coat, Black Hat: Adventures on the Dark Side of Medicine. Elliott is a professor at the Center for Bioethics at the University of Minnesota. His work has appeared in The New Yorker, Atlantic Monthly, the Believer, Slate, the London Review of Books, and the American Prospect. His six previous books include Better Than Well, Prozac As a Way of Life, Rules of Insanity, and A Philosophical Disease.
The pharmaceutical industry gets a bad rap. To listen to the critics you’d think pharmaceutical companies are in the same sleazy category as oil, finance and tobacco companies. But pharmaceutical companies invent life-saving medications, not to mention countless other psychoactive products that many of us enjoy on a recreational basis. Pharmaceutical companies get blamed for fraud, kickbacks, and research deaths, but they never get the credit for oxycontin.
That is why I was thrilled to see that GlaxoSmithKline is sponsoring the prize for the British Medical Journal's annual Research Paper of the Year. Sure, the pharma-bashers will whine like infants at the BMJ’s decision to brand a medical research prize with the name of multinational drug company, just as they’re whining about an American editor’s decision to re-locate a leading bioethics journal to the Texas headquarters of a stem cell tourism clinic. These people just don’t get it. This is not about propaganda or corruption. It is about developing innovative medications for diseases that we didn’t even know existed.
In that spirit, my nomination for the GlaxoSmithKline (GSK) Research Paper of the Year goes to a ground-breaking article about GSK’s very own antidepressant, Paxil, which was published in the Journal of the American Academy of Child and Adolescent Psychiatry. The title of the article is “Efficacy of Paroxetine in the Treatment of Adolescent Major Depression,” but seasoned pharma-watchers know it better as Study 329. The data behind Study 329 showed that Paxil didn’t actually work in adolescents – that, in fact, it was no better than a sugar pill. However, as any marketer understands, bad data cannot be allowed to interfere with a good paper. By the time Study 329 appeared in print, GSK had used the magic of biostatistics to transform the raw data into a gleaming advertisement for Paxil. As a result, when FDA eventually decided that Paxil had a few minor side-effects, such as suicide, Study 329 had already done its work: getting a GSK product into the hands of troubled teenagers. And wait, here’s the beauty part: although the published version of Study 329 was “authored” by leading academic psychiatrists, it was actually written by a GSK ghostwriter.
Of course, the pharma-bashers have been complaining about Study 329 for years. Some of them even want the journal to retract it. The lead “author” who signed the paper, Martin Keller of Brown University, has been beaten up by the Senate Finance Committee, harassed by the New York attorney general, and vilified in the press, all because he put his name on a ghosted article and forgot to report half a million dollars in pharmaceutical income. To which I say: stand strong, GSK. Ignore the naysayers and the nitpickers. It’s about time you gave these good people some public recognition. Yes, it’s true that Study 329 is eleven years old, but you’re paying the BMJ over $47,000 tosponsor this prize. Surely they can bend the rules, just this once.
Today's post is by Patricia Harman, a certified nurse midwife and author who lives and works near Morgantown, West Viriginia. Her first book, The Blue Cotton Gown, was called “luminescent, ruthlessly authentic, humane, and brilliantly written” by author Samuel Shem. Her second book, Arms Wide Open, was described by Tina Cassidy, author of Birth: The Surprising History of How We Are Born, as "A sparkling, vivid story of how a midwife is born-and survives."
As a nurse-midwife and women’s health care provider, I see the issue from the front-line when my patients who don’t have insurance come to me with breast problems. Follow me into my exam room and you’ll see what I mean.
Forty-five-year-old Gail Wilson lies on the table with her left breast exposed. I don’t even have to touch her to see there’s a mass. A lump the size of a quail’s egg shows in the upper right quadrant and I inwardly cringe.
“It’s bad isn’t it?” Gail asks me.
“Well, it’s not good, but not all lumps are cancer. How long have you had it?”
“About a year.”
“A year! Weren’t you worried?"
“Not at first, but finally my husband insisted I get an exam. He was laid off at the shirt factory three years ago and we don’t have health insurance…” Her voice trails off apologetically. “There isn’t a Planned Parenthood in my area and it took a few months to find a provider that would see me.” I let out my air wondering how and where I will get this woman a mammogram. I can do her visit for free, but it’s $350, at the hospital, for the scan.
It takes me four days and I’m getting worried, when I finally find a program through the health department that will fund Mrs. Wilson’s mammogram. Unfortunately the news isn’t good; the test shows breast cancer, stage 4, with metastasis into the lymph nodes. Gail waited too long. She won’t last the year.
Approximately 1 in 8 U.S. women will develop breast cancer during their life time, that’s around 300,000 new cases each year and 20% of those women don’t have health insurance.
In a nation as rich as the United States, it is a travesty that people like Gail and her family cannot get diagnostic tests when they need them, cannot get an examination when they’re ill, cannot get medication when it’s prescribed.
The Susan Komen incident should be a wake up call. There are those on the religious right who are willing to sacrifice important health care services to the poor in order to advance their pro-life agenda. Until everyone has access to care, no matter what our personal beliefs about pregnancy termination, we must support Planned Parenthood and other women’s health organizations like it. That’s Pro-life too.
Half a million babies are born prematurely in the United States every year. In this gripping medical narrative, Dr. Adam Wolfberg brings readers into the complex world of newborn intensive care, where brilliant but imperfect doctors do all they can to coax life into their tiny, injured patients. As a specialist in high-risk obstetrics and the father of a child born prematurely, Wolfberg explores the profound questions raised by such fragile beginnings, both from the front lines of the NICU and from his daughter’s bedside.
His daughter Larissa was born weighing under two pounds, and he describes the precipitous birth at six months that left her tenuously hanging on to life in an incubator. Ultrasound had diagnosed a devastating hemorrhage in her brain that doctors reasoned would give her only a 50 percent chance of having a normal IQ. Through Larissa’s early hospital course, Wolfberg examines the limitations of newborn intensive care medicine, the science of “neuroplasticity,” and the dilemmas that surround decision making at the beginning of life.
Wolfberg also takes us into the lab where researchers are working to improve the futures of children born too soon. He follows a young scientist, Jason Carmel, who was inspired to study how the brain adapts to injury when his twin brother was paralyzed in an accident. Through lucid medical reporting, Wolfberg details current scientific practices and discoveries, and explores the profound emotional and ethical issues raised by the advancing technology that allows us to save the lives of increasingly undeveloped preemies.
As they make decisions about life-saving care in the first hours of a premature infant’s life, doctors and parents must grapple with profound moral and medical questions: How aggressively should doctors try to save the life of a premature baby, who will be severely neurologically and physically impaired? What might that child’s quality of life be like after millions of dollars are spent on her care? Wolfberg traces the fits and starts of the physicians, government policy makers, and lawyers who have struggled over the years to find the best way to make these wrenching decisions. Written from Adam Wolfberg’s unique experience as a reporter, as a medical specialist and researcher, and as the father of a prematurely born daughter, Fragile Beginnings lays bare the struggles, discoveries, and triumphs of the newborn intensive care unit.
"One of the big strengths of this relatively small book is that if you are inclined to ponder medicine's larger questions, you get to tour them all. What is health, really?... In the finite endeavor that is life, when is it permissible to stop preventing things? And if the big questions just make you itchy, you can concentrate on the numbers instead: The authors explain most of the important statistical concepts behind evidence-based medicine in about as friendly a way as you are likely to find."—Abigail Zuger, MD, The New York Times
Going against the conventional wisdom reinforced by the medical establishment and Big Pharma that more screening is the best preventative medicine, Dr. Gilbert Welch builds a compelling counterargument that what we need are fewer, not more, diagnoses. Documenting the excesses of American medical practice that labels far too many of us as sick, Welch examines the social, ethical, and economic ramifications of a health-care system that unnecessarily diagnoses and treats patients, most of whom will not benefit from treatment, might be harmed by it, and would arguably be better off without screening.
Drawing on twenty-five years of medical practice and research on the effects of medical testing, Welch explains in a straightforward, jargon-free style how the cutoffs for treating a person with "abnormal" test results have been drastically lowered just when technological advances have allowed us to see more and more "abnormalities," many of which will pose fewer health complications than the procedures that ostensibly cure them. Citing studies that show that 10 percent of two thousand healthy people were found to have had silent strokes, and that well over half of men over age sixty have traces of prostate cancer but no impairment, Welch reveals overdiagnosis to be rampant for numerous conditions and diseases, including diabetes, high cholesterol, osteoporosis, gallstones, abdominal aortic aneuryisms, blood clots, as well as skin, prostate, breast, and lung cancers.
With genetic and prenatal screening now common, patients are being diagnosed not with disease but with "pre-disease" or for being at "high risk" of developing disease. Revealing the economic and medical forces that contribute to overdiagnosis, Welch makes a reasoned call for change that would save us from countless unneeded surgeries, excessive worry, and exorbitant costs, all while maintaining a balanced view of both the potential benefits and harms of diagnosis. Drawing on data, clinical studies, and anecdotes from his own practice, Welch builds a solid, accessible case against the belief that more screening always improves health care.
In her new memoir, Remembering the Music, Forgetting the Words: Travels with Mom in the Land of Dementia, Kate Whouley strips away the romantic veneer of mother-daughter love to bare the toothed and tough reality of caring for a parent who is slowly losing her mind. In an interview we conducted at Whouley's home on Cape Cod, she recounted some of the lessons she learned as dementia took away her mother's ability to care for herself.
Patricia Harman, Certified Nurse Midwife, is the author of Arms Wide Open and The Blue Cotton Gown. Harman has published in the Journal of Midwifery and Women's Health and the Journal of Nursing Scholarship, as well as in alternative publications.
The exam room is like a confessional; I’ve thought this before, so intimate, patients tell me their secrets.
“So, how you doing?” I ask Verona Jenkins, a 50-year-old high school teacher. Her straight brown gray hair is cut in a bob and she sits on the end of the rose vinyl exam table in her blue cotton gown with two strings in the back, swinging her legs like a girl. She has a few small red varicose veins on her calf, but her ankles are tan and slim.
“Ok, I guess. Better.” This interests me. I have her lie down to check her breasts and her abdomen.
“What’s your stress level lately between 1 and 10?” I smile. “Ten means you are about to check into the psych hospital.”
“It was eleven last year, but I’d say only a seven now,” the patient gives me a short laugh, indicating this is a joke, but not much. That’s when our real conversation begins.
The exam room is also like a classroom, a place where I learn countless lessons, and these women, my teachers.
I study Vernona’s face as I palpate her lower pelvis, “Any pain?” She shakes her head no. Occasionally I find a tender ovary or sore uterus that needs further attention, but more often in these encounters I find pain in the heart.
This time Verona looks right at me. “Remember my exam last year? It was the first time I’d seen you.” I finish her internal, take off my exam gloves and settle myself on the rolling stool. The patient sits up and primly straightens her blue cotton gown. “I was a real mess. My seventeen-year-old daughter was out of control. She’d dropped out of school and moved in with her boyfriend. I was so scared; this was my baby, now out of my reach, running hell-bent toward disaster. She was using drugs, marijuana and ecstasy. She told me right to my face…no birth control. She wanted to get pregnant.”
Verona stops and tucks a strand of her hair behind her ear. “I was so frightened for her. We were fighting all the time, and my husband was no help. He just withdrew into his work, even told me once, if I mellowed out and got off her case, things would be better.”
Verona smiles, lets out her air and wipes the few tears with the back of her hand. I reach over and offer her a tissue. “Better. The boyfriend didn’t last long and she came home. She was treated for an STD at the health department, but never got pregnant, thank God.”
“So, is she back in school and everything alright?” I am waiting for a happy ending.
“No.” Verona tips her head to the side with a little regret. “She doesn’t do much of anything. Sleeps late, watches TV, reads a little; sometimes she cooks.”
I squint. This would be difficult.
“So isn’t that hard for you?”
“At first, it was, but I was just so glad to have her home and safe, I decided to give up on the lectures and just accept her for who she is.” The voice in my head goes quiet. “Just accept her for who she is.”
“And guess what?” the patient goes on. “The other day, the three of us went out to dinner and Kayla said to us, ‘You know Mom and Dad. You are my favorite people. You accept me unconditionally.’ Twelve months ago we were wolverines at each other’s throats.
“Just the way she said it, unconditionally. I knew she had been reading or maybe only watching Oprah, but she was going to be ok.”
Now I have tears in my eyes. Just accept them for who they are. I’ve read of the miracles it brings when you just love someone unconditionally. I do that with my patients, but with my own boys, Zen, Mica and Orion, I must constantly be shepherding, trying, with my wooden crook, to steer them away from cliffs, lead them down into the green valleys. And does it work? No. I just meet resistance.
I write Verona a script for her hormone replacement and give her a hug. The woman can’t know the gift she has given me. Outside the exam room, I place my hand on the cherry wood door, palm open, fingers spread. I look down the carpeted, hall, and seeing no one, bow from the waist.
Three months ago I heard my mother's voice for the first time since I was nine. When I first heard her voice I said, "Mom! You have a Texas accent!" All those years of reading her lips and I had never really known that. We both laughed ourselves sick.
When she was six months pregnant with me, she'd been given an antibiotic that saved both our lives, but left me with a chemical imbalance that insidiously ate away at my hearing.
As I wrote in my memoir, "By the time I was nine the voices of everyone I loved had all but disappeared."
That was my life for 51 years. Then, last May, I was given a cochlear implant. I'd resisted it like crazy. I was used to my hearing aids and couldn't believe the operation (which is, after all, a brain surgery) could offer anything better than I already had. I'd worked hard to understand as much as I could and to be myself in the world. But one day, after attending a meeting with my Vocational Rehab counselor and me, my lover and sweetheart Donna Marie said to me, “Why should you have to work so hard?"
So there was that. And the fact that my counselor had almost exactly the same type of hearing loss I did (profound) and she had two implants. Her audiologist, who is my audiologist, told me that to watch her after she had had the implant was like seeing someone put points on their IQ.
So I had the operation. They implanted receivers in my brain, tucked a magnet under my scalp. It took me a month to heal. And then they brought out the gem-- the cochlear computer itself. When I first began thinking of the cochlear I had imagined the machine to be the size of half my head-- a huge, robotic, unabsorbed twin.
The real deal looked sweet in its little box. It slipped easily behind my ear. And the coil that ran from the computer to the magnet inside my head was no bigger than the thumb of an alderman.
When they first turned it on, I was in a soundproof room alone with Katherine Gray the audiologist, an intern, Donna, and Diane Wilkins, who was taping it for a documentary about the process we're doing called Rewired.
They turned it on and that soundproof room turned on in my head like a space shuttle-- filled with sounds that everyone else in the room had long learned to ignore. It tore my head off.
That's why Katherine had insisted on holding my hand. The rush of sound is like the rush of blood and makes you sick with the excess.
I was terrified that I wouldn't be able to adapt. And then Katherine let go of my hand and took out a small child's bell and rang it.
And that tiny little bell sounded in my brain so sweetly, so clearly, my whole soul turned to it.
That was the beginning of my new love affair with sound. The world is exactly what I thought it would be -- a miraculous, buzzing confusion. And my brain is already beginning to categorize the different meanings of different sounds. So, yes, there are birds -- which I kind of believed in because I had seen the fluttering through the skies but never really believed that they made the cacophony that everyone claimed. But then I heard them clanking and clattering. And they were all one until again my brain became to sort through them and tell me, well, this is one kind of bird and it makes a sweet trill; and this other yaks like a gossip. And this one over there -- and, god, I actually could locate it by its singing-- and the song sounded (or so I imagined) first like yearning and then changed. Of course in my state of mind I defined that change of tone as happiness.
Photo of Terry Galloway enjoying piano taken for the documentary Rewired.
This week, we've been sharing stories by Terry Galloway, author of Mean Little deaf Queer: A Memoir. Today, we're posting an excerpt from that book, in which she explains the difference between Big-D and Little-d deaf.
We're giving away five signed copies ofMean Little deaf Queer. To enter, leave a comment on today's post, like any post about the book on our Facebook page, or share a link on Twitter. We'll choose winners at random at the end of the week from entries across our social media empire.
I recently read that hearing is the last of the senses to go. I’ve taken this to mean I’m going to be buried alive, because, deaf as I am, I won’t know I’m not already dead. This alarming new bit of information moved me to take up the nonhearing exercises I used to indulge in when I was younger. I put my hearing aids aside, stretch out on the bed, and get myself ready for what’s in store. The mattress trembles with every passing car and so do I. When a train rumbles and chugs along the tracks three blocks to the north, my body rumbles and chugs right along with it. Thunder shakes the walls of the little house where I live and the shocks of it make the headboard and my own heart thwack. Lying there awake too long breeds in me a deep unease, a fear that I ought to be feeling something I’m not. My longtime love, Donna Marie, calling for help in the back room; our cat, Tweety, yowling piteously to be let in. Those are the times when going deaf the way I have, in fits and starts, seems most akin to dying. I’m losing, will lose, have lost. And each step of the way, my body seems to have been trying to tell me something new, something it seems I ought to have known all along.
In 1961, the year after I was diagnosed, my body reached a tipping point and I began to lose my hearing in big old chunks. It was a loss as erratic and unsettling as a Ukrainian train schedule. I’d lose a decibel or two of sound, then my hearing would stabilize. A day, a week, a month later, whole conversations would fade into gibber- ish. Familiar noises like the purr of the refrigerator would simply vanish and I’d have to adjust all over again. One late afternoon I fell into a doze on the couch listening to my parents’ muttered lazy Sunday conversation, then woke a handful of minutes later to what seemed like nothing. For two days even my own voice was an echo in my head.
I loved the crispness of my own speech, a trait both Trudy and I picked up from our German maids. When we first moved from Germany to Texas my precise enunciation marked me as somehow superior to those who drawled or squeezed words through their noses. After my deafness took hold, my speech began changing, every vowel out of my mouth taking on a soft slur that people took for south- ern. I didn’t love the South then, the way I love it now. And that change to my voice embarrassed me, but not as much as it did to see the new incongruities of my voice reflected in people’s faces, the wince when I was talking too loudly, the grimace when I wasn’t talking loudly enough, or the skeptical twist of brow when I’d swear I didn’t mean my tone to be angry, that I had no idea I sounded sardonic when I’d meant to sound sincere. I could feel all the lilt and color draining from my voice, feel it becoming a monoto- nous drone. I’d forget to give the end of a sentence a vocal twist to make it mean this one thing, or drop the sound in the middle to make it mean another. I found it hard to remember how words I knew sounded, harder still to learn new words I couldn’t quite hear. My two sisters loved playing teacher, and made exaggerated facial displays, showing me how my lips should move to form the new syllables. But even with my new hearing aids it was hard to piece the muted gabble of sounds together into any kind of sense.
Hearing aids or no, I was constantly being taken unawares, and that made me jumpy, almost paranoid. I didn’t realize someone was running around the corner until the body was upon me, didn’t answer the voice calling from the bathroom until they’d got up off the toilet to scream, didn’t know anyone was pounding at a locked door unless I accidentally opened it and they came tumbling through. I was a private child, made even more private by the con- fusion and intensity of my sexual desires, and everyone seemed to be sneaking up on me. I needed a big hunk of uninterrupted solitude to play out my needs to their natu- ral conclusions, and it divided my focus having to keep one eye on my closed bedroom door and the other on my Barbie and Midge dolls having sex.
At the same time, I was discovering, to my repeated embarrassment, the Freudian element in lip reading. One memorable afternoon as I was inching forward in the lunch line, I looked up at the lips of the fourth-grade sex bomb who had just cut in front of me, and was wonderfully taken aback when she deigned to address me: “Hey kid, you’ve just made my day!” My heart started thumping like a happy Disney bunny until her flat inflection, her narrowed eyes, and the pinchy look around her nose clued me in to what she’d really just said, which was, “Hey pig, get out of my way.” Who knew deafness could be so ironic?
All my mother and father knew of deafness was what they’d seen in a film called Johnny Belinda, about the rape of a tragically clueless deaf and mute girl doomed, like me, always to be taken by unwelcome surprise. All they knew about the deaf was that they signed. My parents didn’t know what to think of Sign. They knew it to be a real lan- guage, but it was an alien one, something neither one of them—even my father, with his spy’s proficiency in Ger- man and Russian—could ever imagine learning. When the Texas school system offered them the choice of leav- ing me in public school or enrolling me in a school for the deaf, they had no idea how to choose, and left it up to me. I’d seen only one person sign before, and the symbols her hands carved out of air seemed akin to the soundless lan- guage of the TV Apaches I so admired. I was already using my hands anyway—to gesture, touch, and feel. Sound was quickly seeping away from me, leaving me in a void I was anxious to fill. I would have welcomed that new way to understand. But for my mother’s sake I wanted to appear whole again. I already knew how to do that—act cool and pretend all was well. Over pancakes one Sunday morning, my parents asked me if I wanted to transfer to a special school where they’d teach me to sign. I didn’t even bother to think about it, just downed my cocoa and rolled my eyes as if they’d told the biggest joke in the world. “Sign? Hah. Not for me, thank you. And pass the syrup, please.”
At public school in Fort Hood, I sat up front and did the best I could to learn, and each afternoon served out a two- hour sentence in the gulag known as special ed. Special ed was usually held in a one-room annex that looked like a trailer on stilts. There was a steep ramp with handrails running from the ground to the door. The room was dark and close and stuffy, just big enough to hold the handful of us special kids. There was usually someone in a wheel- chair, someone blind, someone dull and thuggish, and at one point a sister and brother who seemed old to be in elementary school—they both had a shadow of a beard and a look about their eyes that reminded me of dogs turned mean after being poked at, beaten, and teased. I realize now they were probably mildly retarded, because when- ever they talked, which was seldom, their faces would con- tort in rubbery exaggeration, as if they had to fight their own muscles to get the words out right. We did nothing productive those two hours we were together. Zero. Zilch. We sat, fidgeted, or stretched out and whiled away the hours. Since I was able-bodied I helped empty the pee bags and sometimes I’d read aloud while the volunteer assis- tant, whose Texas twang thrummed like an overtightened string, would correct my pronunciation, teaching me to say “fir” instead of “for” and “enny” instead of “any.”
I was a clever little schemer and a voracious reader, so I managed to keep up in my regular classes at school, getting hard-won B’s and A’s even though the teachers had a bad habit of turning their backs as they were speaking to write on the blackboard. I’d read their lips as they said, “We call the theory that there is only one . . .” then they’d turn their backs and the rest would be lost in puffs of chalk. It didn’t occur to me to ask my teachers to change their behavior, to look at me when they were talking, to slow down so I could read their lips. I was a child and thought I had no agency. But I knew I was flying by the seat of my pants, that every answer I gave was guesswork, that I couldn’t really spell or diagram a sentence; and at age ten, then eleven, then twelve, I was still using my fingers to add and subtract. It wasn’t until years later that I found out I’d been one of the lucky ones.
As a child I didn’t pay much heed to other deaf chil- dren, because I didn’t know any. The deaf as a people don’t regard themselves as disabled but simply a culture entire, like the Amish. And, like the Amish, they keep to themselves. There is a definite hierarchy in that deaf cul- ture. If you are deaf of deaf—a deaf person born to deaf parents—and your language is Sign and the company you keep is primarily deaf, you are Deaf with a capital D. If you are hearing-born to deaf and you sign and live and play primarily within the deaf community, your blood is still pure. It dilutes a bit with every variation from those first golden means, but lowest on the deaf totem pole are the waverers like me who came to deafness gradually or late and were “mainstreamed” to be part of the hearing world. As a general rule we suck at Sign. My own Sign is on par with my Spanish, which can get me to the bathroom, but after that, nada. We are known as the little-d deaf.
Growing up, I knew none of this. I was twenty-five before I went to my first deaf gathering, and I was taken aback to encounter hostility and suspicion there. When I introduced myself as Deaf, overenunciating and gesturing broadly with my hands, one of the women signed to me furiously, her eyes getting harder by the second as she re- alized how little I understood. I wasn’t Deaf but deaf, and when she signed the lower-case d I could almost smell its rotten tang. I’d gone there thinking I’d be embraced like a prodigal daughter and instead found myself under fire for, so I thought—the same curse that had befallen me at the Lions Camp for Crippled Children—not being disabled enough. Hostility makes me hostile in return. It was all I could do not to stick out my tongue and grimace and pos- ture like a Maori warrior. I walked out of there thinking they were a closed, provincial bunch and I was better off outside their preachy little circle. I remained smug in my lowercase superiority until a few years later when I devel- oped a crush on a deaf woman who was a consultant for the PBS television series for disabled children I was cowriting. She spoke as well as signed and it was she who told me these stories.
Once upon a time in certain institutions for the deaf, Sign was out of fashion and something called total communication was in. Total communication simply meant that deaf children would be taught any and all ways to communicate, and that meant lip reading as well as Sign. In some places the message got skewed and in those places the fashion of the day became for deaf children, all deaf children, to learn to lip-read and speak. Sign was frowned upon if not strictly forbidden. As an expert lip-reader I can tell you, lip-reading is a true talent and hard as hell to learn. Most people never can.
The children who couldn’t learn to lip-read tried to please their teachers by moving their lips while mimicking what they thought were the right sounds. But the sounds they made were random, based on raw physicality, the feel of air moving through the throat and head. Hearing par- ents didn’t like their children vocalizing this way, because it was too close, they complained to the teachers, to the grunting of animals. If the sounds the children were mak- ing weren’t the “perfect” ones, their teachers would tape the children’s mouths as punishment. The children were trying their hardest to please, to communicate, so they’d gesture as they tried to form the shapes of the words in their minds, shapes for which they had no sounds. That struck their teachers and their parents again as looking too animal, too vulgar, too much like Sign, so to teach them better, the teachers would tie the children’s hands to their chairs. “Read the lips,” they were told over and over again, but those children couldn’t do more than guess what they were being asked to read. It was next to impossible for them to find the essence of elusive sounds in the swift mo- tion of the mouth. Many of them grew up without language—a whole generation who couldn’t speak, couldn’t sign, and could barely read or write.
She had other stories to tell me too, of unbearable disregard. A child was born to hearing parents, both doctors, full of high expectation for their children, but this infant girl wasn’t thriving like her two brothers. She seemed indifferent to language, slow to respond to the simplest commands. They were ambitious, busy people who had no time to waste on a child who was, for whatever reason, less than perfect. They diagnosed her themselves as being mentally retarded and had her committed as a toddler to a state institution. Years later a new attendant who was fond of the child noticed her collecting gum from under the tables and chairs. As he watched her fashion intricate and fantastical figures from the raw material, it began to dawn on him that a mistake had been made. He stood behind her and clapped his hands. She didn’t respond. That was all it took to find out she was simply deaf.
Years later I met that girl. By then she had become an artist, living on her own. She wore two hearing aids like mine and also had pulled off a miracle—she not only signed, she lip-read. She vocalized too. But when we talked, I remember thinking how interesting it was that her facial expressions were identical to those of the brother and sister I knew from special ed. I never shared my observation with her. I didn’t want her to be disturbed about something she couldn’t change. Besides, she probably already knew the oddities of her own speech, the same way I know that when I talk—despite all my pains—the words out of my mouth are cottony, blurry around the edges, as if they’re in danger of being swallowed back down my throat. Exactly the way a little-d deaf like me would speak.