Americans view death way differently than other cultures. This woman wants to change that.

Joanna Ebenstein's grandmother confessed to her in private — not because she had a secret to tell, but because no one else wanted to hear it.

Grandma was in her 90s by then and had been with her husband for over 70 years before he passed away. She was eager to die herself and join her beloved, and she told Ebenstein as much.

"It was painful for me to hear, and it made me sad," Ebenstein says. "But at the same time, it made me think: How did we get to this point in our society where just about the most important thing you could say to another human being has become taboo? And what does that say about us?"


Dina and Benno Ebenstein. Image from TEDx Talks/YouTube.

When Ebenstein visited Europe for the first time after college, she was struck by the presence of death in culture and art.

"Contemporary American attitudes towards death are so jarringly different from any other time or place," she says. "It’s almost paradoxical to us, the idea that death and beauty could be intertwined in one object. And yet if you go to Europe and you visit churches and museums, you see literally thousands of objects that do this."

She wondered: how did we become the ones who don't talk about this?

"Americans want the good without the bad," Ebenstein says. "Life without death. Pleasure without pain. Light without dark. But that doesn’t exist."

Ebenstein began to collect and analyze death-related objects, images, and customs from around the world in hopes of better understanding American perspectives around death. Some of that research led her to create a photo exhibition about medical museums in 2007.

A few artifacts from Ebenstein's collection. Photo provided by Joanna Ebenstein. Used with permission.

As a supplement to the project, Ebenstein launched a blog called Morbid Anatomy, which quickly took on a life of its own beyond the photo exhibition. It grew into a lecture series, then a dedicated gallery space in Brooklyn, New York, called the Morbid Anatomy Library, where visitors could check Ebenstein’s collection of books and artifacts.

Morbid Anatomy grew a cult following and expanded until it was more than the space could contain. There was clearly an interest and need for this kind of open, honest examination of death and our relationships to mourning.

After a lecture one Halloween, Ebenstein met Tracy Hurley Martin.

Martin and her twin sister, Tonya Hurley, came from a family in the mortuary business, which had always informed their aesthetics and interests. They were traveling to Mexico to learn more about Santa Muerte, a popular new religion also known as the church of Our Lady of the Holy Death. The sisters ended up donating some artifacts to the library, and Martin and Ebenstein got to talking about how there should be an entire permanent cafe or shop just like Morbid Anatomy.

A shrine to Santa Muerte in Mexico. Photo by Yuri Cortez/AFP/Getty Images.

With help from a talented team of architects, they turned a vacant bakery space into the Morbid Anatomy Museum, which opened its doors in 2014.

The museum drew visitors from all over the world — some from the same group who supported the original space. But it also drew families, medical professionals, and, interestingly enough, lots of young people. Ebenstein credits the museum’s appeal to its irreverent playfulness and intentionally amateurish, almost DIY aesthetic.

Martin recalls the first exhibition, "Art of Mourning," which showcased how people during the Victorian era memorialized their dead through hair art, photographs, death masks, and jewelry. "Visitors came and felt an openness to share their own personal experiences and talk about traditions surrounding death in their own families," she says. "I remember being there and people opening up about death, this taboo topic. That’s when I realized we did something special."

Outside the Morbid Anatomy Museum. Photo provided by Joanna Ebenstein. Used with permission.

But changing America's taboo around death was not financially viable, and the museum closed after two and a half years.

The rising costs of New York City real estate and a decline in charitable donations meant the death of the museum.

“We always said our mission was devoted to things that fall between the cracks. Well, we also fell between the cracks of funding," Ebenstein says. "We tried to apply for art grants but were told we weren’t 'art' enough. We tried to apply for cultural grants, but we weren’t quite that. We weren’t any one of those things, which is what made the museum special — but also what made it difficult to fund."

Inside the museum. Photo by Neilson Barnard/Getty Images for Showtime.

While the Morbid Anatomy Museum itself might be dead, the movement to change America's mourning culture is more alive than ever, and women like Ebenstein and Martin are at the forefront.

It’s making a resurgence everywhere from coloring books to rock 'n' roll musicals to sustainability in the funeral industry. There are death salons where people gather to talk about the topic and a whole new movement taking shape around the idea of "death positivity" — and just like the Morbid Anatomy Museum, they're all the brainchildren of brilliant women.

"Why does this stuff appeal to women more? If there was an easy answer, it wouldn’t be interesting. But I know it’s an important question,” Ebenstein says. “Birth and death are linked to the feminine in ancient gods. Maybe it was something to do with natural cycles that we’re more attuned to. Or maybe women are more embodied in themselves, arguably. We bleed every month. We have babies. So we can’t be as squeamish about the body. We just don’t have that luxury."

Femininity can be seen in deities across cultures, including Santa Muerte, the Chinese moon goddess Chang'e, and Persephone, queen of the underworld in ancient Greece. Images via Not home/Wikimedia Commons, the Metropolitan Museum of Art/Wikimedia Commons, and Jebulon/Wikimedia Commons.

Death used to be a part of everyday American lives. People used to die in their homes instead of hospitals. Life expectancy was lower, and child mortality was more common.

Then something changed.

Ebenstein suggests the shift happened in the early 20th century. While the rest of world was dealing with destruction from world wars and conflicts in emerging nations, Americans moved death offstage. It was outsourced to funeral homes for profit, and the parlors where we once laid our dead were turned into "living rooms." Death became distant to us, and we continued to push it further away, until it became an even more terrifying mystery.

But ignoring something doesn’t make it disappear. Perhaps if we come together to acknowledge our shared humanities — and the fact that we all meet the same end — we wouldn’t have to be so afraid. Because without death, it's impossible to celebrate life.

The airline industry was one of the hardest hit by the COVID-19 pandemic, as global and domestic travel came to a screeching halt last spring. When the pandemic was officially declared in March of 2020, no one knew what to expect or how long the timeline of lockdowns and life changes would last.

Two weeks after the declaration, Delta pilot Chris Dennis flew one of the airline's planes to Victorville, CA for storage. He shared photos on Facebook that day of empty planes neatly lined up, saying it was a day he would remember for the rest of his life.

"Chilling, apocalyptic, surreal...all words that still don't fit what is happening in the world," he wrote. "Each one of these aircraft represents hundreds of jobs, if not more."

He added:

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The airline industry was one of the hardest hit by the COVID-19 pandemic, as global and domestic travel came to a screeching halt last spring. When the pandemic was officially declared in March of 2020, no one knew what to expect or how long the timeline of lockdowns and life changes would last.

Two weeks after the declaration, Delta pilot Chris Dennis flew one of the airline's planes to Victorville, CA for storage. He shared photos on Facebook that day of empty planes neatly lined up, saying it was a day he would remember for the rest of his life.

"Chilling, apocalyptic, surreal...all words that still don't fit what is happening in the world," he wrote. "Each one of these aircraft represents hundreds of jobs, if not more."

He added:

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True

Each year, an estimated 1.8 million people in the United States are affected by cancer — most commonly cancers of the breast, lung, prostate, and blood cancers such as leukemia. While not everyone overcomes the disease, thanks to science, more people are surviving — and for longer — than ever before in history.

We asked three people whose lives have been impacted by cancer to share their stories – how their lives were changed by the disease, and how they're using that experience to change the future of cancer treatments with the hope that ultimately, in the fight against cancer, science will win. Here's what they had to say.

Celine Ryan, 55, engineer database programmer and mother of five from Detroit, MI

Photo courtesy of Celine Ryan

In September 2013, Celine Ryan woke up from a colonoscopy to some traumatic news. Her gastroenterologist showed her a picture of the cancerous mass they found during the procedure.

Ryan and her husband, Patrick, had scheduled a colonoscopy after discovering some unusual bleeding, so the suspicion she could have cancer was already there. Neither of them, however, were quite prepared for the results to be positive -- or for the treatment to begin so soon. Just two days after learning the news, Ryan had surgery to remove the tumor, part of her bladder, and 17 cancerous lymph nodes. Chemotherapy and radiation soon followed.

Ryan's treatment was rigorous – but in December 2014, she got the devastating news that the cancer, once confined to her colon, had spread to her lungs. Her prognosis, they said, was likely terminal.

But rather than give up hope, Ryan sought support from online research, fellow cancer patients and survivors, and her medical team. When she brought up immunotherapy to her oncologist, he quickly agreed it was the best course of action. Ryan's cancer, like a majority of colon and pancreatic cancers, had been caused by a defect on the gene KRAS, which can result in a very aggressive cancer that is virtually "undruggable." According to the medical literature, the relatively smooth protein structure of the KRAS gene meant that designing inhibitors to bind to surface grooves and treat the cancer has been historically difficult. Through her support systems, Ryan discovered an experimental immunotherapy trial at the National Institutes of Health (NIH) in Bethesda, MD., and called them immediately to see if she was eligible. After months of trying to determine whether she was a suitable candidate for the experimental treatment, Ryan was finally accepted.

The treatment, known as tumor-infiltrating lymphocyte therapy, or TIL, is a testament to how far modern science has evolved. With this therapy, doctors remove a tumor and harvest special immune cells that are found naturally in the tumor. Doctors then grow the cells in a lab over the next several weeks with a protein that promotes rapid TIL growth – and once the cells number into the billions, they are infused back into the patient's body to fight the cancer. On April 1, 2015, Ryan had her tumor removed at the NIH. Two months later, she went inpatient for four weeks to have the team "wash out" her immune system with chemotherapy and infuse the cells – all 148 billion of them – back into her body.

Six weeks after the infusion, Ryan and Patrick went back for a follow-up appointment – and the news they got was stunning: Not only had no new tumors developed, but the six existing tumors in her lungs had shrunk significantly. Less than a year after her cell infusion, in April 2016, the doctors told Ryan news that would have been impossible just a decade earlier: Thanks to the cell infusion, Ryan was now considered NED – no evaluable disease. Her body was cancer-free.

Ryan is still NED today and continuing annual follow-up appointments at the NIH, experiencing things she never dreamed she'd be able to live to see, such as her children's high school and college graduations. She's also donating her blood and cells to the NIH to help them research other potential cancer treatments. "It was an honor to do so," Ryan said of her experience. "I'm just thrilled, and I hope my experience can help a lot more people."

Patrice Lee, PhD, VP of Pharmacology, Toxicology and Exploratory Development at Pfizer

Photo courtesy of Patrice Lee

Patrice Lee got into scientific research in an unconventional way – through the late ocean explorer Jacques Cousteau.

Lee never met Cousteau but her dreams of working with him one day led her to pursue a career in science. Initially, Lee completed an undergraduate degree in marine biology; eventually, her interests changed and she decided to get a dual doctoral degree in physiology and toxicology at Duke University. She now works at Pfizer's R&D site in Boulder, CO (formerly Array BioPharma), leading a group of scientists who determine the safety and efficacy of new oncology drugs.

"Scientists focused on drug discovery and development in the pharmaceutical industry are deeply committed to inventing new therapies to meet unmet needs," Lee says, describing her field of work. "We're driven to achieve new medicines and vaccines as quickly as possible without sacrificing safety."

Among the drugs Lee has helped develop during her career, including cancer therapies, she says around a dozen are currently in development, while nine have received FDA approval — an incredible accomplishment as many scientists spend their careers without seeing their drug make it to market. Lee's team is particularly interested in therapies for brain metastases — something that Lee says is a largely unmet need in cancer research, and something her team is working on from a variety of angles. "Now that we've had rapid success with mRNA vaccine technology, we hope to explore what the future holds when applying this technology to cancers," Lee says.

But while evaluating potential cancer therapies is a professional passion of Lee's, it's also a mission that's deeply personal. "I'm also a breast cancer survivor," she says. "So I've been on the other side of things and have participated in a clinical trial."

However, seeing how melanoma therapies that she helped develop have affected other real-life cancer patients, she says, has been a highlight of her career. "We had one therapy that was approved for patients with BRAF-mutant metastatic melanoma," Lee recalls. "Our team in Boulder was graced by a visit from a patient that had benefited from these drugs that we developed. It was a very special moment for the entire team."

None of these therapies would be available, Lee says without rigorous science behind it: "Facts come from good science. Facts will drive the development of new drugs, and that's what will help patients."

Chiuying "Cynthia" Kuk (they/them) MS, 34, third-year medical student at Michigan State University College of Human Medicine

Photo courtesy of Cynthia Kuk

Cynthia Kuk was just 10 years old when they had a conversation that would change their life forever.

"My mother, who worked as a translator for the government at the time, had been diagnosed with breast cancer, and after her chemotherapy treatments she would get really sick," Kuk, who uses they/them pronouns, recalls. "When I asked my dad why mom was puking so much, he said it was because of the medicine she was taking that would help her get better."

Kuk's response was immediate: "That's so stupid! Why would a medicine make you feel worse instead of better? When I'm older, I want to create medicine that won't make people sick like that."

Nine years later, Kuk traveled from their native Hong Kong to the United States to do exactly that. Kuk enrolled in a small, liberal arts college for their Bachelor's degree, and then four years later started a PhD program in cancer research. Although Kuk's mother was in remission from her cancer at the time, Kuk's goal was the same as it had been as a 10-year-old watching her suffer through chemotherapy: to design a better cancer treatment, and change the landscape of cancer research forever.

Since then, Kuk's mission has changed slightly.

"My mom's cancer relapsed in 2008, and she ended up passing away about five years after that," Kuk says. "After my mom died, I started having this sense of urgency. Cancer research is such that you work for twenty years, and at the end of it you might have a fancy medication that could help people, but I wanted to help people now." With their mother still at the forefront of their mind, Kuk decided to quit their PhD program and enter medical school.

Now, Kuk plans to pursue a career in emergency medicine – not only because they are drawn to the excitement of the emergency room, but because the ER is a place where the most marginalized people tend to seek care.

"I have a special interest in the LGBTQ+ population, as I identify as queer and nonbinary," says Kuk. "A lot of people in this community and other marginalized communities access care through the ER and also tend to avoid medical care since there is a history of mistreatment and judgement from healthcare workers. How you carry yourself as a doctor, your compassion, that can make a huge difference in someone's care."

In addition to making a difference in the lives of LGBTQ+ patients, Kuk wants to make a difference in the lives of patients with cancer as well, like their mother had.

"We've diagnosed patients in the Emergency Department with cancer before," Kuk says. "I can't make cancer good news but how you deliver bad news and the compassion you show could make a world of difference to that patient and their family."

During their training, Kuk advocates for patients by delivering compassionate and inclusive care, whether they happen to have cancer or not. In addition to emphasizing their patient's pronouns and chosen names, they ask for inclusive social and sexual histories as well as using gender neutral language. In doing this, they hope to make medicine as a whole more accessible for people who have been historically pushed aside.

"I'm just one person, and I can't force everyone to respect you, if you're marginalized," Kuk says. "But I do want to push for a culture where people appreciate others who are different from them."