Reading Toms River

When I was a medical resident working at Memorial Sloan Kettering in the late 1980s, some of us joked about the apparently high cancer rate New Jersey. It seemed, though none of us could prove it, that too many of our patients came from the state across the Hudson. Statistics can be tricky, I knew. Sometimes we notice clusters of disease that are just random blips, constellations or flukes.

river landscape, by Frits Thaulow

river landscape, by Frits Thaulow

So when Dan Fagin’s book, Toms River, came out two months ago, I was drawn. The narrative opens with a gripping portrait of a young man whose frame was irrevocably altered by a childhood cancer. It moves on to the history of the small town in central NJ where Ciba, an international chemical company now subsumed by BASF, set up shop in the early 1950s.

The residents hadn’t a clue what was happening to their water. Fagin, an environmental journalist, wades through a half century of dumping, denial, Greenpeace efforts to expose the situation, local citizens’ mixed responses, real estate, some basic and theoretical chemistry, cancer registries and more.

I value this book highly. Toms River could be a lot of places – pretty much anywhere pollution goes unchecked. As the author points out near the end, the problem’s manifest in China now, and elsewhere. It’s a lesson in business ethics, among other things.

The tale intersperses epidemiology and statistics with local politics and individuals’ lives. It reveals just how hard it is to prove cause and effect when it comes to cancer – which, as I’ve said before, is no reason to let industry go unregulated. Because we’ll rarely if ever get definitive, 100%-style evidence that a particular compound causes cancer in humans. Rather, the story points to the need for lowering the threshold for chemicals on the list, and for regulating toxins in manufacturing.

A subtler point, deeper in some ways, is that there are people who don’t want to think about their neighborhood’s water supply or the food they like to eat…”Out of sight and out of mind,” Fagin says in the thick of it. He’s spot-on, there: when a toxic exposure is disconnected from its outcome by decades – and diluted, we tend not to notice or worry.

#humannature

 

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Dr. Edward Shortliffe, on the History and Future of Biomedical Informatics

Last week I had the opportunity to hear and meet Dr. Edward Shortliffe at the New York Academy of Medicine. He’s a maven in the field of biomedical informatics (that would be the “other” BMI), and a pioneer at that. He mentioned that he began working on an electronic health record (EHR) when he was an undergraduate at Harvard in 1968.

Shortliffe emphasized the multidisciplinary nature of the field – that clinicians and computer science-oriented types need be involved for health information technology (HIT) to be effective. “Human health is at the core of it,” he said. The goal of biomedical informatics isn’t for computers to replace humans, he said, but for doctors to learn how to use it – as a tool – so that we (human doctors) can practice better medicine.

He reviewed the 50-year history of the field. The super-simple summary goes something like this: in the 1960s hospitals developed early information systems; in the 1970s, early decision support and electronic health records (EHRs) emerged at hospitals and large institutions; in the 1980s clinical research trials led to databases involving patients across medical centers; in the 1990s, progress in science (especially genetics) led to modern biomedical informatics. Now, the vast work includes clinical, imaging, biology (molecular, genomic, proteomic data) and public health.

Clinical informatics is the newest field supported by the American Board of Medical Specialties.  The first boards will be offered in October of this year, he mentioned.

If you’re interested in the future of health IT, as I am, you might want to take a glance at a perspective published recently by Dr. Shortcliffe and two coauthors, Putting Health IT on the Path to Success, in JAMA. The authors consider the slow pace of implementing HIT, and suggest that the solution rests with patient-centric Health Record Banks (HRBs):

“…Health record banks are community organizations that put patients in charge of a comprehensive copy of all their personal, private health information, including both medical records and additional data that optionally may be added by the patient. The patient explicitly controls who may access which parts of the information in his or her individual account.

I’d like to see these emerge.

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Finding Kindness and Introspection in ‘Half Empty,’ a Book of Essays by David Rakoff

Regrettably, I found the essayist David Rakoff by his obit. It happened last August. The Canadian-born New Yorker died at age 47 of a malignancy. In a reversal of a life’s expectancy’s, the writer’s death was announced by his mother, according to the New York Times.

I was moved to read one of Rakoff’s books, Half Empty, and in that discovered a man who, I like to think, might have been a friend had I known him. It’s possible our lives did cross, perhaps in a hospital ward when I was a resident or oncology fellow, or in Central Park, or through a mutual friend.

The last essay, “Another Shoe,” is my favorite. Rakoff learns he has a sarcoma, another cancer, near his shoulder – a likely consequence of the radiation he received for Hodgkin’s in 1987. He runs through mental and physical calisthenics to prepare for a possible amputation of his arm. He half-blames himself for choosing the radiation years before: “I am angry that I ever got the radiation for my Hodgkin’s back in 1987, although if it’s anybody’s fault, it is mine,” he wrote. “It had been presented to me as an easier option than chemotherapy.” He reflects on his decision as cowardly and notes, also, that it didn’t work.

He wound up getting chemo anyway, a combination – as any oncologist might tell you, but not in the book –that’s a recipe for a later tumor.  So one take-away from this sort-of funny book, among many, is that how doctors explain treatments and options to patients – the words we use – matter enormously, not just in clinical outcomes, but in how people with cancer feel about the decisions they’ve made, years later.

The other part on words, which I love, is a section on the kinds of things ordinary people – friends, neighbors, relatives, teachers…tell people who have cancer. It appears on pages 216-217 of the paperback edition:

“But here’s the point I want to make about the stuff people say. Unless someone looks you in the eye and hisses, ‘You fucking asshole, I can’t wait until you die of this,’ people are really trying their best. Just like being happy and sad, you will find yourself on both sides of the equation over your lifetime, either saying or hearing the wrong thing. Let’s all give each other a pass, shall we?

I look forward to reading more of Rakoff’s essays, and appreciate that he’s given me so much to think about, on living now.

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Image Share Project (Finally) Enables People to Share and Access Radiology Results

Today Laura Landro reports in the WSJ on the Image Share Project. According to her Informed Patient column, people who want to access and share radiology images pertaining to their health, such as MRIs or CT scans, can do so using this program. The platform enables easier transmission of electronic versions of large, detailed images. Pilot medical centers involved include New York’s Mount Sinai Hospital, UCSF and the Mayo Clinic.

a doctor looks at a medical image on a computer (NIH, NIBIB)

a doctor looks at a medical image on a computer (NIH, NIBIB)

The Radiological Society of North America is on board with the program. This makes sense, among other reasons because funding comes from the NIH’s National Institute of Biomedical Imaging and Bioengineering (NIBIB). According to the WSJ: “This is all about giving patients control of their health information and engaging them in their own care,” said David Mendelson, director of radiology-information systems at Mount Sinai and a principal investigator on the project.

I’m fine with this – how could I not be? Great, super, and of course patients should have access to electronic files of their x-ray images! Except why has it taken so long? Hard to fathom that in 2013 we’re exploring “pilot” sites where patients can enroll in a program that allows them to transmit their electronic health images to doctors in other cities.

Sooo 2003, you’d think.

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News on Occupational Exposure to N-PropylBromide, a Neuro-toxin

Yesterday’s NY Times drew my attention with a front-page article on the Occupational Safety and Health Administration (OSHA) and its inability to prevent harm among furniture and cushion factory workers in the U.S.  Even though hundreds of workers in North Carolina handling nerve-damaging glues have developed neurological toxicity, OSHA failed to suppress use of likely chemical culprits.

structure of n-propyl bromide (Wiki-image)

structure of n-propyl bromide (Wiki-image)

Regulating industry is complicated. The Times reporter, Ian Urbina, focuses on a compound, n-propyl bromide, aka nPB or 1-bromopropane, that’s used by “tens of thousands of workers in auto body shops, dry cleaners and high-tech electronics manufacturing plants across the nation.”

Problem is – it’s hard and possibly impossible, based on studies of factory workers, to prove cause and effect. He writes:

Pinpointing the cause of a worker’s ailment is an inexact science because it is so difficult to rule out the role played by personal habits, toxins in the environment or other factors. But for nearly two decades, most chemical safety scientists have concluded that nPB can cause severe nerve damage when inhaled even at low levels…

The lack of absolute proof – that a particular chemical substance has cause disease in an individual –is exacerbated by the fact that many cushion and glue workers’ symptoms, like numbness and tingling, are subjective: At one company, Royale, a ledger of employees’ illness is said to list “Alleged Neurologic Injury.” This phrase reflects the evaluators’ doubt of the handlers’ complaints and, by insinuation, adds insult to injury – some so severe the workers couldn’t button a shirt, feel a cut, bleeding foot, or stand for more than a few minutes.

The government agency that might respond, OSHA, is woefully understaffed. According to the Times:

“OSHA still has just 2,400 responsible for overseeing roughly eight million work sites — roughly one inspector per 60,000 workers, a ratio that has not changed since 1970. The federal budget for protecting workers is less than half of that set aside for protecting fish and wildlife…

Regulation of industry kills jobs, some say – it’s for this reason that some individuals most likely to suffer harm from manufacturing align with corporations. What’s more, if people lack education about chemistry and need employment, they may not choose or know what’s in their long-term best interests. This piece, like the story of Toms River, points to the unfortunate reality that many citizens tolerate and even take pride in a damaging local business, especially if the health problems it causes are insidious, affect some but not all exposed, and the facts aren’t in full view.

 

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Reading and Hearing ‘Bang the Drum Slowly’

image from the 1973 film

Recently I read Bang the Drum Slowly, a 1956 novel by Mark Harris about players on a fictional baseball team. According to the University of Nebraska Press website, this book was once ranked among the top 100 sports books of all time by Sports Illustrated.

This is a rare cancer narrative. I’d give it 4 stars, or maybe even 5 – depending on my mood and your scale. The story’s told from the perspective of the New York Mammoths’ reliable and usually-winning pitcher, Henry Wiggen. With reason, his teammates call him “Author.” Early on, Author learns his team’s less verbal catcher, Bruce Pearson, had traveled, covertly, to Rochester Minnesota for treatment of Hodgkin’s disease.

In the patient’s words, he’s “doomeded.” Author’s immediate response reveals a clear sense of obligation to his teammate: “I will come,” he says, despite that it’s far away and his wife is pregnant. When he gets to the medical center in Minnesota, he finds Bruce looking deceptively well:

“…and in he come, all dressed, all fit as a fiddle, looking as tip-top as I ever seen him, and I said, ‘This is sick? This is why I dropped everything back home and risked my life in a snowstorm and went to the expense of a new wardrobe in Minneapolis?’   (p. 11)

Harris’s insights and skepticism about physicians in white coats and research funding are familiar now. As his protagonist (Author) remarks:

“’…You are the boys that send me 50 letters a day looking for contributions for your rotten hospitals. What do you do with the contributions I send?’

‘We done many great things,’ said the first doctor. ‘We are only human and cannot do everything.’ (p. 13)

This slim work, oddly elegant in its tenderness and guyish language, resonates today. Some of the pertinent issues include Author’s difficulty in keeping the knowledge of his friend’s illness to himself, the others’ varied responses to the catcher’s disease and cope with his looming death, some acquaintances trying to take advantage of the situation while others reach out and help, fear of the disease…It’s loaded!

An unmissable medical message – apart from the work’s cultural aspects – is that the young player with Hodgkin’s lymphoma had what was accepted as an incurable illness back then. Today, approximately 90 percent of young people with that cancer type survive for decades after the illness and may have a full life after treatment. With so much talk about the costs of care, and research, it’s easy to forget that this was a usually-lethal disease, even at the best of medical centers six decades ago.

I plan to see the two cinematic versions of this story. The first appeared on TV in a 1956 episode of the United States Steel Hour, with Paul Newman as Author and Albert Salmi playing the infirm catcher, among others. More of you may be familiar with the 1973 movie, called Bang the Drum Slowly, starring Michael Moriarty and Robert DeNiro.

Toward the end of the book, a character nick-named Piney sings an old tune about a dying cowboy with this verse: “O bang the drum slowly and play the fife lowly, Play the dead march as they carry me on, Put bunches of roses all over my coffin, “Roses to deaden the clods as they fall.” Some of the players mind the music more than others. The author admits feeling sad.

Though I didn’t find much on the original music behind those verses, which probably exists and has a long history, I did find a clip of Emmylou Harris singing a newer song of the same name.

Emmylou Harris sings another version of "Bang the Drum Slowly" (YouTube)

Emmylou Harris sings another version of “Bang the Drum Slowly” (YouTube)

All these “lessons” – stories of patients, from patients, about patients, form a trail.

ES

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Can Anyone Be a Patient Advocate?

The first time I met an official patient advocate, it was the spring of 1991. I was a first-year fellow, learning by treating patients with blood disorders and all kinds of cancers.

A young gay man with low platelets came to see me in consultation. It was his first visit to the clinic. As I walked by the desk on the way to greet him, the receptionist mentioned that the patient was accompanied by an advocate. “He’s from an organization,” she whispered. “Just thought you’d want to know.”

“OK,” I agreed, not sure what to expect.

My patient was a frail, tired-appearing and polite young man in his 20s. He lived in the West Village and was no longer employed, suffering from AIDS. The man who accompanied him was also thin, perhaps 30 years old – like me, then – and what you might call assertive. The advocate explained that he’d stay with the patient during the evaluation and discussion of recommendations. He added that he’d seen a file on me at ACT UP, and that I was “all right.”

We walked into one of the small consultation rooms. I took detailed notes on the patient’s medical history – too long for his age, approximately 23 years. His body was frail and bruised. A bouquet of tiny red spots lined his palate. Similar marks, a bit darker, coated his legs over and above both ankles. We called those – a manifestation of low platelets – petechiae. I reviewed the patient’s prior blood tests, and drew a sample that I might examine his cells under the microscope.  Later on, the patient, advocate and I spoke about his likely diagnosis and treatment options.

This encounter – my first with an advocate – happened approximately 22 years ago. I don’t know the long-term outcome of the patient’s story, but it’s likely he died of AIDS within a year or two of that encounter. He’d already had several serious infections, and his T cells were quite low as I recall. The advocate may have died, too, but I was not privy to his medical history. All I learned about the advocate – over the course of a few visits, and never by my asking him questions – was that he was involved with ACT-UP, that he was extremely familiar with AIDS manifestations, and that he cared that my patient have access to treatment by a considerate doctor.

So who’s a patient advocate, today?

I’ve been wondering about this, in part because I’d like to serve as a patient advocate on a committee and help decide on priorities, meeting agendas and funding for, say, breast cancer research. Some agencies consider that someone like me – a physician who’s had significant illness – can’t serve as a patient advocate at a table with limited chairs, because I have a medical degree. The problem is, I’m on “the other side,” or something along those lines.

"The Sick Woman," aka "The Doctor and His Patient," by Jan Steen, 17th Century, Rijksmuseum Amsterdam (WikiCommons)

“The Doctor and His Patient,” by Jan Steen

It happens that some physicians, including your author at Medical Lessons, are among the fiercest proponents of patients’ rights I know. I support patients’ unrestricted access to information about medicine and new research, to reasonable treatments matching their preferences and values, and to respect from health care providers. At the same time, I’ve seen doctors who, it seems, promote or outright advertise themselves as “patient advocates” on blogs, websites, in books and elsewhere. Suspicious, yes, but not necessarily untrue –

So here’s the question for the crowd: Can a good doctor, or a nurse, or a physical therapist, or any other person employed by the health care system, serve as a patient advocate?

I’m sure I served an advocate for my patients, years ago, while I was practicing, just as I might now, for people with various illnesses. Tell me I’m wrong.

Comments please! How, exactly, might we define a patient advocate? And, while we’re at it – who’s a patient navigator, and what’s the difference?

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What Do We Need Doctors For?

One of the first questions I asked on this blog was, Are Doctors Necessary? In  2010, I wondered if the Internet and other open resources could replace physicians’ advice. Say you’re feeling OK and not obviously sick, you might prefer to just read and draw upon the wisdom of the crowds, Google and books. If you have a pesky symptom, you might just look it up, or pretend it’s not there, and see if it goes away, without seeking a doctor’s input.

Marcus Welby, M.D. (1969–1976), IMDb image

Marcus Welby, M.D. (1969–1976), IMDb

But if you’re sick – if you’re a patient, and not a consumer, in this blog’s lingo – well, then, of course you need a doctor if you want to get well. Physicians are necessary, still, especially if you’ve got a serious illness, like colon cancer, malaria, catatonic depression, rheumatoid arthritis or Type I diabetes, to name a few doctor’s attention-worthy conditions. Even for someone like me, who’s gone through med school, residency, fellowship and spent years giving medical care to other people, having a thoughtful physician – someone whose experience and intelligence I trust – is indispensible.

My doctors help me sort through the literature, if I choose to read it (I don’t always) and figure out what makes sense for me to live without pain and as fully as possible. I value their work immeasurably. But, as much as I have been helped by nurses, physical therapists, pharmacists and peer patients, the doctor’s opinion matters most. Admittedly, I’m lucky in this. Over the years, I’ve accrued a team of excellent physicians whom I trust. That’s not a common scenario now, which is part of why this question matters so much.

The updated part of the question, now, is whether nurse practitioners (NPs), straight RNs, physician assistants (PAs), pharmacists, social workers and others including, yes, peer patients, should take up much – or even most, of doctors’ tasks. As outlined in a recent editorial, these non-physician health care workers can be paid less and may do a better job at certain chores that, historically, have been carried out by MDs. They can order scans and contact patients about the results, fill out forms for home physical therapy, measure your blood pressure and give injections, like flu shots.

At one level, assigning minor and not-so-minor tasks to other kinds of health care providers sounds great. It’s a partial, 2-for-1 solution, because it relieves the physician shortage and, simultaneously, lowers health care costs. It makes perfect sense, to a point, for efficiency.  There are, legitimately, some tasks that nurses are better-trained to do, such as giving medications. Pharmacists are more likely to pick up on dangerous drug combinations than busy pediatricians, because that’s the focus of their work and training. Peer patients are valuable too. Etc.

But if doctors are just thinking about your “case” or doing complex  procedures, and not being the ones to call you back, or putting in intravenous catheters, or even just sitting and taking a thorough history – they’ll know you less well. And if they spend less time with you, a patient with a serious illness, they – according to the laws of human nature, and my observations on rounds on hospital wards over many years – will not care so much about the outcome of your case. When and if a doctor spends time with a patient, that builds trust, concern, and – possibly, better outcomes.

Reality dictates that we have to protect doctors’ time so they can read, sleep, and spend at least a few minutes each day with the people they care about outside of the workplace, and take care of themselves. If we don’t unload some of the tasks to other health care workers, we’d have to assign fewer patients to each physician. That would exacerbate the shortage…

No simple answer –

ES

 

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Contemplating Breast Cancer, Beyond October 2012

It’s foggy today, October 3, ten years since the last mammogram I had and will ever need. I’ve been remiss in updating the blog. The reasons include family concerns and other projects. Meanwhile, I’ve been thinking about the big picture – what’s most important for progress against breast cancer in the decade ahead.

So here’s what I see, now – in terms of three priority areas: improving treatment, prevention, and education to inform treatment decisions.

Pumpkins, organized by subtype (WikiCommons image)

As an oncologist, I perceive huge strides in understanding BC since the time of my diagnosis. But these advances are largely invisible to patients because they’re in the realm of pathology and classification of different subtypes. What was essentially a 3-type malignancy with a handful of treatment options has expanded under the molecular microscope to a spectrum of 4, 10 or – what’s probably most accurate – hundreds or thousands of patient-particular conditions, depending on the level of precision by which you define a disease. I’m optimistic, because it looks as though, in my lifetime, BC treatment will be tailored to each patient. There’ll be less surgery and better drugs.

The hitch, now, is not so much with science as with funding– funding to analyze each patient’s tumor at the genetic and protein levels, funding to pay for treatments selected by patients (which might include less treatment and/or palliative care in advanced cases), and funding to educate doctors about BC subtypes and medical progress, so they might offer “modern” advice to each patient in ordinary clinics, apart from clinical trials and academic centers. Newer is not always better in medical care. Same goes for more treatment (especially when it comes to higher doses). Still, the lag between advances in BC science and application of distinct, targeted and better treatments is frustrating at best.

Some of my colleagues call for patience – emphasizing that studies need be confirmed, drugs tested in mice, etc. Their point is that we can’t jump from pathology research and new BC classifications to new therapy. But one lesson I take from progress against AIDS is that maybe we shouldn’t be so patient. At least not for young people with poor-prognosis BC subtypes or stage. We could do studies and studies of particular BC treatments, and studies of studies (those would be meta-analyses) and debate 8 or 10 years from now whether a particular drug or combination of drugs worked in clinical trials that selected for patients with an antiquated subtype of the disease. Or we could move toward “n=1” trials, with smart, well-trained physicians assessing each patient by a combination of old-fashioned physical exams and the most modern of molecular studies of the tumors, considering the options, and moving forward with individual, mini-experimental treatment plans.

I vote for the latter. If the drug works in a patient with advanced BC and the patient feels better, why not?

For people with early-stage BC, prescribing or taking new and essentially untested drugs makes less sense at first glance. That’s because standard treatments are “successful” – leading to long-term remissions and possible cures in over 80 percent of those affected. But these relatively good results may have, paradoxically, hampered development of better drugs that could obviate the need for breast-deforming surgeries and radiation in many women. The possible application of BC drug cocktails, in lieu of surgery for early-stage patients, is a huge question for the future, and one for which trials would be necessary. Just getting those projects going – applying BC science to treatment of early-stage cases – would be a step in the right direction.

As for BC prevention, of course that would be infinitely better than detecting or treating the disease. Unfortunately, I think we’re farther away from preventing the disease than we are from having effective and less brutal treatments for most patients. The problem with lifestyle modification – like staying active and not obese – is that it’s far from full-proof: You can be seemingly fit as a fiddle and get a lethal case of BC. Still, there are plenty of other health-related reasons for women to exercise and eat sensibly. As for avoiding carcinogens or, first, just knowing what chemicals contribute to BC formation and growth, the science isn’t there yet.  It’ll be a long haul before anyone can prove that a particular chemical causes this disease. That said, I advocate research in the slow-growing field of environmental oncology and wish there’d be more enthusiasm for regulating our exposure to likely-toxic chemicals.

The third priority is for improving education in math and science, starting at the elementary school level. Doctors need to understand statistics, but many don’t. They need to know about genomics and basic science in medicine. Patients need this kind of knowledge if they want to have a clue, if they want to engage meaningfully in decisions about which antibody to take, or pill, or whether they want to participate in a clinical trial of pills instead of surgery for a Stage II tumor with high levels of Her2, for example. That’d be a tough decision for an oncologist. I only wish that we could reach the point where we could have those kinds of truly informed conversations about clinical treatment of breast cancer, which happen every day.

We’ve got a lot of information in hand, but we need to learn how to apply that to more patients, faster and more openly.

All for a while. I’m open to ideas on this. Happy October!

ES

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A Comedian Tells the Story of His Child’s Cancer

Yesterday a video came my way on Facebook. It’s a stand-up piece by Anthony Griffith, who tells what it was like working as a comedian when his 2-year old daughter had recurrent cancer and died.

This 9 minute clip packs sadness and pain:

The Moth Presents Anthony Griffith

“If you don’t know about cancer, when it comes back it comes back hard.” It’s “meaner and stronger,” he explains. To compensate for its added aggressiveness, doctors raise doses of chemo and radiation. That’s not easy for anyone, a child no less.

He reflects on his daughter’s condition back then: “So she’s bald, which she doesn’t mind because every kid in the ward is bald, and she thinks it’s a part of life…”

He recalls his predicament, as a parent: “You’re not prepared for this. There’s no books, there’s no home-ed class to teach you,” he says.  Therapists were off-limits in his community. “So you try to figure it out.”

“What did I do?” he wondered, trying to make sense of his daughter’s illness. His musings cross all kinds of barriers.

Griffith was thrilled to appear several times on Johnny Carson’s Tonight Show. But NBC is “all about nice and everything is going to be OK.” He felt pressured to keep everything “light” when he wanted to speak honestly.

He recounts how he felt. “And I’m hurting, and I want everyone else to hurt because somebody is to blame for this,” he shouts, two decades later. He suppressed his anger, bucked up, and performed.

Rage persists, understandably, still.

The powerful clip is produced by the Moth, an NPO dedicated to storytelling. H/t to Jen Singer.

Thank you to Mr. Griffith, the comedian and actor, for telling it like it is.

 

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