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What Cancer Takes Away

April 8, 2019

Anne Boyer writes, “When I got sick, I warned my friends: Don’t try to make me stop thinking about death.”

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Before I got sick, I’d been making plans for a place for public weeping, hoping to install in major cities a temple where anyone who needed it could get together to cry in good company and with the proper equipment. It would be a precisely imagined architecture of sadness: gargoyles made of night sweat, moldings made of longest minutes, support beams made of I-can’t-go-on-I-must-go-on.

When planning the temple, I remembered the existence of people who hate those they call crybabies, and how they might respond with rage to a place full of distraught strangers—a place that exposed suffering as what is shared. It would have been something tremendous to offer those sufferers the exquisite comforts of stately marble troughs in which to collectivize their tears. But I never did this.

Later, when I was sick, I was on a chemotherapy drug with a side effect of endless crying, tears dripping without agency from my eyes no matter what I was feeling or where I was. For months, my body’s sadness disregarded my mind’s attempts to convince me that I was O.K. I cried every minute, whether I was sad or not, my self a mobile, embarrassed monument of tears. I didn’t need to build the temple for weeping, then, having been one. I’ve just always hated it when anyone suffers alone.

…continue reading ‘What Cancer Takes Away’

thumb image via The New Yorker – illustration by Bianca Bagnarelli

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The New Yorker

The Hospital’s Gift of Downtime

December 19, 2018

The hospital, especially during the holidays, crystallizes an unavoidable truth: There’s simply no substitute for being there

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The Hospital’s Gift of Downtime

Wednesday, December 19th, 2018

Christmas week is a strange time in the hospital.

There’s an added melancholy for patients who spend the holidays hospitalized — a sense that their illness, whatever it might be, is so bad they must lie in bed while the world hangs ornaments and roasts chestnuts on open fires. It’s a time when the doctors and nurses on call start to feel the weight of jobs that too often keep them close to computers and far from their families.

And yet, a certain camaraderie emerges, an extra measure of meaning and gratitude growing from the recognition that we’re all there together. Santa hats emerge. Ugly sweaters replace white coats. Candy canes flow freely.

…continue reading ‘The Hospital’s Gift of Downtime’

Image: By Kgbo – Own work, CC BY-SA 4.0, https://commons.wikimedia.org/w/index.php?curid=64463397

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NY Times

Gene Editing Might Mean My Brother Would’ve Never Existed

August 10, 2017

On August 2nd, scientists achieved a milestone on the path to human genetic engineering. For the first time in the United States, scientists successfully edited the genes of a human embryo. A transpacific team of researchers used CRISPR-Cas9 to correct a mutation that leads to an often devastating heart condition

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Gene Editing Might Mean My Brother Would’ve Never Existed

Thursday, August 10th, 2017

Responses to this feat followed well-trodden trails. Hype over “designer babies.” Hope over new tools to cure and curb disease. Some spin, some substance and a good dose of science-speak. But for me, this breakthrough is not just about science or medicine or the future of humankind. It’s about faith and family, love and loss. Most of all, it’s about the life and memory of my brother.

Jason was born with muscle-eye-brain disease. In his case, this included muscular dystrophy, cerebral palsy, severe nearsightedness, hydrocephalus and intellectual disability. He lived past his first year thanks to marvels of modern medicine. A shunt surgery to drain excess cerebrospinal fluid building up around his brain took six attempts, but the seventh succeeded. Aside from those surgeries’ complications and intermittent illnesses due to a less-than-robust immune system, Jason was healthy. Healthy and happy — very happy. His smile could light up a room. Yet, that didn’t stop people from thinking that his disability made him worse off. My family and those in our religious community prayed for Jason. Strangers regularly came up to test their fervor. Prayer “circles” frequently had his name on their lists. We wanted him to be healed. But I now wonder: What, precisely, were we praying for?

Image via TIME The author (left), with his brother Jason Courtesy of Joel Reynolds

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TIME

When Your Doctor Is Fitter Than You Are

July 13, 2017

“I enjoy working out at the gym,” declares one profile. “To keep myself fit, I like to hike, bike and exercise,” says another. These comments aren’t part of a dating site. Rather, they come from physicians’ online profiles that prospective patients view when they are looking for a new doctor

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When Your Doctor Is Fitter Than You Are

Thursday, July 13th, 2017

There are good reasons doctors might strive to lead by example. “I practice what I preach by living healthy every day,” declares one physician on Kaiser Permanente’s online doctor search portal. Patients may trust or be inspired by such a doctor, the thinking goes. And if health care professionals fail to follow their own advice, they may be accused of hypocrisy.

But for some patients, particularly those battling weight issues, a doctor’s declarations of personal fitness may not have the intended effect of attracting new patients. Instead, rather than inspiring them, it can drive them away.

Recently, my colleague Benoît Monin and I studied doctors who advertise their fitness online. Past research has shown that people worry that those who claim the moral high ground will look down on others whose behavior seems unfavorable by comparison. For example, meat-eaters worry that vegetarians will judge them because of their diet. We wondered: Could emphasizing fitness make doctors seem “healthier than thou” and turn off patients?

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NYTimes

It’s Time For Doctors To Hang Up The White Coats For Good

September 17, 2015

You wouldn’t want to be cared for by a doctor who doesn’t wash his or her hands. You wouldn’t want to be operated on with instruments that weren’t sterilized or stay in a hospital room that wasn’t cleaned regularly. Why would you want to be treated by a doctor wearing a white coat that hasn’t been washed in a week? Many white coats are covered in bacteria like MRSA – they are dirty

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It’s Time For Doctors To Hang Up The White Coats For Good

Thursday, September 17th, 2015

By Philip Lederer:

On a warm August 2004 day in Philadelphia, I joined 150 first-year medical students on stage at the University of Pennsylvania to celebrate the start of our medical careers. The dean called our names and, one by one, draped short white coats around our shoulders. We then stood together as a class and recited the Hippocratic Oath, reflecting on the importance of becoming humanistic physicians. My parents had driven up from Kentucky and proudly sat in the audience. It was a powerful ritual and a memorable day.

During my four years of medical school, I wore that short white coat on the hospital wards. After graduation, I moved to California and traded in the short white coat for a long one. Residency was exhausting. I was on call for 30 hours every few nights, my coat became sullied, and it was difficult to keep it pristine even with frequent washing. Once, after rounds in the intensive care unit, the attending physician took me aside. “Do a better job washing that coat,” he admonished me. “Patients and their families shouldn’t see you like that.” But even with bleach, my coat never regained its original luster.

Several years later, I am an infectious diseases fellow at Massachusetts General Hospital and Brigham and Women’s Hospital and help teach the Harvard Medical School students when they do their infectious diseases clinical rotations. When I came here, I was given new white coats embroidered with the names of the prestigious institutions where I work. But I have never worn them.

(image: Samir CC BY-SA 3.0)

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The Conversation

Seeking Respect and Trust in Sickle Cell Disease

May 23, 2014

Growing up with sickle cell disease, Carlton Haywood Jr, PhD, MA, learned early on just how important respect and trust are for patient-provider relationships. Now, through his studies, we are all learning more

What Cancer Takes Away

What Cancer Takes Away

The Hospital’s Gift of Downtime

The Hospital’s Gift of Downtime

Gene Editing Might Mean My Brother Would’ve Never Existed

Gene Editing Might Mean My Brother Would’ve Never Existed

When Your Doctor Is Fitter Than You Are

When Your Doctor Is Fitter Than You Are

It’s Time For Doctors To Hang Up The White Coats For Good

It’s Time For Doctors To Hang Up The White Coats For Good

Seeking Respect and Trust in Sickle Cell Disease

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