Randi Hutter Epstein M.D. M.P.H.

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A New Play Shines Light on Women Long Forgotten

In the years leading up to the Civil War, about a dozen or so female slaves were part of a series of gruesome experiments that culminated in a huge advance in gynecology.

They were operated on over and over in a ramshackle shed in Dr. J. Marion Sims’ Alabama backyard. Sims was determined to figure out a way to heal vaginal tears caused by long labors.

He succeeded and became world famous. In addition to his surgical cure—a technique that would spare women worldwide some of the ravaging consequences of giving birth—Sims also invented the speculum and founded a woman’s hospital in New York. For more than a century he was hailed as one of the great humanitarian physicians.

For years, the story of J. Marion Sims focused on his achievements. But lately, his story has been revived without glossing over his journey to prominence, culminating not only in heated discussions.

Yet, however the story is told, the spotlight has always been on Dr. Sims. Harriet A. Washington wrote about him in Medical Apartheid. Her book along with subsequent articles prompted protests that resulted in the removal of a Sims statue that had been on Fifth Avenue in New York City. Deborah Kuhn McGregor wrote about him in From Midwives to Medicine. I also wrote about Sims and his legacy in Get Me Out: A History of Childbirth from the Garden of Eden to the Sperm Bank.

But who are these women? There are no diaries, nothing about what they had to say. We know the names of three of them. Lucy. Betsey. Anarcha. So when we write, they become two-dimensional, lumped together in one group: “The slave women.” To be sure, Washington dug deep to bring a voice to Anarcha Wescott, but so many of the women have remained anonymous because we just don’t have the information.

Now, Charly Evon Simpson, a playwright, has given voice to the voiceless. Her new play, Behind the Sheet, is inspired by the real events allowing her to shift the spotlight from Simms to the slaves.

We meet these young pregnant slaves who endured operations—some of them had up to 30 surgeries. But for the first time we are forced to imagine them in three dimensions, as yearning, bonding, compassionate, jealous, hurting women. Simpson gives these women agency.

Ben Brantley in the New York Times said the production “takes on cumulative power in its steady, clear eyed depiction of a time when it was a given that pain would be borne uncomplainingly by human beings regarded as chattel.”

While some of the dialogue is lifted right from J. Marion Sim’s autobiography, Simpson adds a plot twist.

In her play, the doctor is George Barry. We also meet Philomena, his assistant/pregnant mistress/slave. In real life, there was no Philomena. Or rather, there’s no record of Sims having a mistress or impregnating a slave. I found the injected storyline added heft to the play—we see his own mistress suffering and we see happens to her after her child with him causes her to suffer from tears. We see what happens to her after Sims finds his cure and heads north.

Harriet Washington, the Medical Apartheid author, ethicist and historian, applauded the play as a must-see—but, as she wrote in Nature,  the Philomena addition “muddies the already murky ethical waters of volition, coercion, sentiment and motivations.”

The night I went, there were audible gasps from the audience. The woman behind me sobbed. I assumed people went for the reason I did. We knew the story and were curious to know how this fictionalized version would come alive on stage. But perhaps this was news to some of them. And that’s a good thing. This is an important chapter in medical history that needs to be debated in wide circles outside of academia.

Simpson, in an interview with Science Friday, said that her goal was not to bring what has been written to the stage but to infuse life to the women, long forgotten. “I’m a black woman and have ancestors who were enslaved,” Simpson said. “I wanted to give them back the humanity that society at the time stripped way.”

Behind the Sheet had sold-out performances at the Ensemble Studio Theatre and is now extended until March 10th. Here’s more information about the show.

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Tuning in to Stressing Out

Having spent most of my career on college campuses (I’ve basically never left since I got my undergraduate degree in 1984), I’ve had the opportunity to meet amazing students. Their list of achievements never ceases  to astonish me. But at the same time, their remarkable successes concern me. I worry that in their race to collect awards to bloat their already swollen resumes, they lose sight of the point of it all. What will happen when everything they do isn’t graded? What will happen when they reach their goals but there’s not another award in sight? How will they find fulfillment?

As the Writer in Residence at Yale School of Medicine, I read a lot of essays. One of my second-year medical students penned a piece that articulates the pressures that she and her peers feel. But she also offers advice—words of wisdom that she is trying to follow and hoping others will too. I’m happy to post her essay as a guest piece on my blog:

HAMSTER WHEELS: BREAKING THE CYCLE

BY CHAARUSHI AHUJA

When we were younger, my sister wanted a hamster, but my parents were quick to deny her request. They had heard too many frustrated stories from other parents who were annoyed by the critter’s incessant spinning in place. They found the hamsters’ habit of tirelessly chasing the ladder in front of its eyes to be pointless, and so they figured, not interesting, for a pet.

Ten years out, it baffles me that the quality my parents rejected in a hamster is what we are now embracing as a society. When I look around, I see young people, like my peers and me, running on our own wheels, pursuing fleeting goals with no real end or pauses in sight.

The National College Health Assessment reported recently that 60% of current college students felt “extreme anxiety” within the last two months of the survey.  Younger generations, the Gen Z-ers and millennials, consistently report the highest levels of stress compared to any other generation so far.

The number should shock me. But it doesn’t.

It’s because what my generation often takes pride in is our relentless ability to collect accomplishments. We win some and then wake up the next day to keep winning some more. We don’t take breaks; we are constantly plugged in, constantly accessible, and constantly on the go. Our drive is applaudable. It brings about innovation, inventions and positive changes in our world. But it comes at the cost of our own sanity.

When I started medical school last year, I felt immense pride for all the hard work, sweat and tears that went into getting admitted. I beamed at the white coat ceremony, excited to enter training for a profession that I had been dreaming of for years. My enthusiasm, though, was short-lived.

One week into school and I moved on from my “win” and was already thinking of goals that lay ahead. What research should I do? What was my strategy for the next time I would have to apply and get admitted? In other words, what was going to be my next set of accomplishments that would shine on my wall, lead to respect, and maybe give me the same rush of excitement that I had gotten when I got my letter of acceptance.

This story, consciously or subconsciously, applies to almost everyone I know. We are running and running, until the thrill of the chase turns to utter stress, which morphs (for three out of five) into a health hazard: extreme anxiety.  The irony, for me, is that I’m training to be a healer.

So, to prevent this pervasive culture from seeping into my life, here’s my new goal: I vow to create time for “reset weekends”. Once every month or two, I disconnect from my work completely; I hop off my hamster wheel and just sit in my cage. I go and find hobbies and passions that give me as much satisfaction as the thought of winning or accomplishing does. On my last reset weekend, I played badminton with my family, checked my phone a mere 4 times that day (a decrease of about 196% ), journaled extensively for 3 hours, and read a novel that had been on my mind for months.

These weekends strengthen my drive. I retune by reflecting on my actions and why the goals I am chasing are meaningful. I pause the journey, and make sure that I am not just spinning, but rather moving forward in a meaningful and satisfying way.

Resetting doesn’t have to be entire weekends; it can be a day, or mere hours—as long as the time reprograms the pursuit and revitalizes it to be more meaningful. One of my friends resets by taking week long vacations twice a year. Although not frequent enough and too long for my taste, it works for him. He is incredibly productive, healthy, and content.

Just imagine this: what if each one of us took moments to hop off the hamster wheel to celebrate, to feast, and to appreciate how far our hard work has taken us. Then rather than downtrodden hamsters fatigued by the constant squeak, squeak, squeak, we all stepped on again, refueled, reenergized, and re-motivated.

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19th Century Climate Change Debates Sound Woefully Familiar Today

This morning, NPR reported on the United Nation’s recent and “sobering” new report about climate change, saying that we are doomed to live in dangerous conditions unless new technologies can remove greenhouse gasses from the atmosphere. For anyone writing or thinking about climate change issues today, it would be worth your while to pick up Deborah Coen’s Climate in Motion: Science, Empire and the Problem of Scale. Of course, for me, the fun facts were the ones that had to do with medicine.

In the early 1900s, scientists created devices to record factors in the environment that were linked to health, such as measuring ultraviolet radiation, ozone levels, and the “feel” of temperature. Humidity was measured using none other than a strand of hair. Scientists back then realized what women have probably known for millennial: your hair gets frizzy in sticky weather. But here’s what most of us didn’t know:  The way humidity effects the length of a strand of hair is standardized, meaning that you can calculate the amount of humidity based on how much hair shrinks or lengthens. It’s not willy-nilly but linked to the amount of moisture in the air. Thus came the Hair Hygrometer. Here’s a piece in Scientific American about how to make your own hair Hygrometer using rubbing alcohol, cotton and other household items.

Around the same time, scientists started to worry about the impact of deforestation, urbanization, and the draining of wetlands on climate. In other words, as Coen explains, these 19th century experts worried about the human impact on climate. Doctors, she writes, believed that climate had a powerful influence on human sexual function. Coen writes why this 19th century tumult matters today in this recent piece in The Conversation. They even prescribed climatic cures to relieve their ailments. Their fears fomented into political infighting—that often had nothing to do with the science but more to do with assumptions, egos, and short-term solutions to development. Sound familiar?

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The Most Amazing Body Part of All

We tend to think of the placenta as a sponge that transfers the mom’s nutrients to the growing fetus—if we think about the placenta at all. Emerging research has been showing that this oft-ignored organ is a lot more complicated than we ever imagined. As a neonatologist explained to me recently, the growing fetus’s nutrient needs change on a day-to-day basis. Somehow, the placenta knows just the right amount of this or that bit of nourishment to provide. It’s a stunning feat.

This month’s Scientific American reports on a study that shows that the body is programmed for symmetry. (The original research was published in PLOS Biology) Researchers injected a substance into a mouse fetus that restricted the growth of one leg. They found that somehow, the cells surrounding the suppressed tissue sent a signal to the placenta to slow growth in the other leg. The study focuses on the ability to maintain symmetry. I also think it’s another shout-out to the remarkable abilities of the placenta.

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A Life-Saving Demonstration

Elizabeth Pfiester, 30, is a medical refugee, of sorts.

It’s a term that makes her cringe, but consider this: Pfiester was born and raised in Illinois. She now lives in England where she can afford to live with Type 1 diabetes. If she moved back to the U.S., she’d have trouble paying for the drugs and equipment necessary to keep her alive.

I’ve written about diabetes for years—the new pumps, the new kinds of insulin, the so-called external pancreas. I focused on advances in endocrinology, leaps in our ability to control and attempt to cure this hormone ailment. But until recently, I’ve ignored the cost. That’s because I started noticing tweets and Facebook posts by diabetes-activists (I didn’t even realize there was such a thing).

So I called up friends and relatives who either have the illness or care for someone who does.

My cousin, whose teenage son has Type 1 diabetes, told me that battling with the pump companies and insulin-making companies and insurance is a full-time job. She knows their numbers by heart. So many mothers told me the same thing. They want their child to have a back-up pump because if the one they have fails, the consequences could be fatal.

That got me thinking that if you’re going to have this condition, you better be really rich or have the moxie and time to keep fighting to get the drugs you or your loved one needs to survive.
Another friend put it this way to me via email:

Welcome to my world.  Pharmacy, glucose monitor, pump people and insurance folks hate me.  Some black comedy for ya..

“Sorry Mr H we can’t ship the insulin”

‘Oh why is that”

” Hope needs her doctor to update her prescription”

“Ummm excuse me why would that be, she’s had Type 1 diabetes – for about 9 plus years. So did I like miss it?” 

“Miss what?”

“Miss the flippin’ front page article that they cured Type I Diabetes – other than checking to see if Hope is dead—I imagine you would not want to ship to a dead person – how is her prescription ever going to change?”

“Well maybe if she changed her diet and exercised she wouldn’t need so much insulin”

“She’s Type 1 not Type 2”

“There’s a difference?”

And so it goes, .9 years every month some other nuttiness. And yes every year premiums go up, deductibles and co-pays go up and the prices for the drugs go up. And every year quarter by quarter need to get reapproved for everything. It’s idiocy.

Next week, on September 30th, Pfiester, who runs an organization called T1International, is flying in from the U.K. for the second annual rally outside of the headquarters of Eli Lilly in Indianapolis. Last year, about 30 people showed up but it was a powerful day, launching several state groups where activists have since gotten insulin price on legislative agenda and continue to push it to the mainstream.

“First and foremost,” said Pfiester, “people should be able to afford to make a choice to take whatever is available and best for their health. Right now, there is a two-tiered system. Those who have good insurance coverage or who can afford it by other means get analog insulin that enables them more flexibility and less unpredictability in blood sugar levels.”

There are older, cheaper forms of insulin but, Pfiester, who used that insulin when she was young, explained that older insulins cause more dangerous highs and lows of blood sugar levels.

Nicole Smith-Holt, is among those planning to speak at the September 30th demonstration. Her son died last year because he couldn’t afford his insulin. He was 26 and was no longer on his parent’s insurance. When he got to the pharmacy, he was shocked by the cost of his insulin. He left the pharmacy without buying any and attempted to ration what he had left. He was found dead in his apartment.

Smith-Holt is not alone. Kevin Houdeshell, 36, died four years ago because the pharmacy did not have his prescription and he could not reach his doctor. It was the afternoon of New Year’s Eve.
The families showing up to the protest next week want to ensure that these tragic stories will never happen again. Those involved with T1International are determined and optimistic. “People who were never active and engaged before are now meeting with legislators, getting commitments from them to tackle drug pricing issues,” said Pfiester. “With tragic stories getting more traction every day, I think the fact that patients are rising up to put an end to corporate greed is something worth amplifying.”

 

If you want to join them, here’s the EVITE: https://www.eventbrite.com/e/indianapolis-insulin4all-demonstration-tickets-48870082733