Sociologist Stephanie Canizales examines the lives of unaccompanied migrant youth in her groundbreaking book, Sin Padres Ni Papeles. Drawing from years of immersive research in the Pico-Union neighborhood of Los Angeles, Canizales sheds light on the systemic challenges these young people face, from exploitative labor conditions to emotional isolation.

She connects their experiences to historical U.S. policies in Central America and Mexico, revealing the deep ties between migration, policy, and economic inequality. This conversation explores resilience, identity, and what must change to ensure justice for migrant communities.

“The conditions that force young people to migrate aren’t inherent to them—they’re rooted in histories of U.S. intervention and inequality.” — Stephanie Canizales

Writers Voice— in depth conversation with writers of all genres, on the air since 2004.

Connect with Us: Follow us on social media to stay up-to-date on the latest episodes and news. Find us on Facebook at Writers Voice with Francesca Rheannon, on Instagram and Threads @WritersVoicePodcast or find us on Bluesky @writersvoice.bsky.social. Read transcripts at the Writer’s Voice Substack. 

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Key Words: Stephanie Canizales, Sin Padres Ni Papeles, unaccompanied minors, migrant youth, labor exploitation, U.S. immigration policy, Central America migration, systemic inequality, undocumented workers, migration

Key Topics

• The personal and structural factors driving unaccompanied migration from Central America and Mexico
• The emotional and material struggles of unaccompanied youth in the U.S.
• Historical U.S. policies and their impact on migration patterns
• The role of labor exploitation and systemic inequality in shaping migrant experiences
• The intersection of identity, resilience, and community among unaccompanied minors
• Broader implications for U.S. immigration reform and social justice

Read an excerpt from Stephanie Canizales’ Sin Padres Ni Papeles to explore the untold stories of unaccompanied migrant youth.

If you found this episode insightful, please share it and leave a review on your podcast app!

Sherri Goodman, a leading voice in climate security, discusses her book Threat Multiplier: Climate, Military Leadership, and the Fight for Global Security.

Goodman explores how climate change amplifies instability, from the Middle East’s water crises, to migration in Latin America, to potential conflicts over emerging shipping routes in the melting Arctic. Goodman also shares insights on geopolitical dynamics involving Russia, China and the Indo-Pacific.

“Climate change is a threat multiplier, exacerbating instability in already fragile regions.” — Sherri Goodman

Writers Voice— in depth conversation with writers of all genres, on the air since 2004.

Connect with Us: Follow us on social media to stay up-to-date on the latest episodes and news. Find us on Facebook at Writers Voice with Francesca Rheannon, on Instagram and Threads @WritersVoicePodcast or find us on Bluesky @writersvoice.bsky.social. Read transcripts at the Writer’s Voice Substack. 

Read The Transcript

Key Words: Sherri Goodman, threat multiplier, climate security, Arctic geopolitics, water weaponization, net-zero military, U.S. military energy goals, climate resilience, renewable energy, China Belt and Road, global security risks.

Key Topics

• The concept of climate change as a “threat multiplier” and its national security implications
• Water scarcity and weaponization in Syria and other conflict zones
• The Arctic’s melting ice: geopolitical tensions and environmental risks
• Efforts to decarbonize the U.S. military and achieve net-zero energy goals
• China’s Belt and Road Initiative and its impact on global climate and security
• Building resilience through military leadership, diplomacy, and renewable energy innovation

If you enjoyed this episode, please share and review!

Listen to Michael Klare on the US, China and Climate

In this episode of Writer’s Voice, we speak with Daniel Fryer, author of How to Cope with Almost Anything with Hypnotherapy, about the science and uses of hypnotherapy in mental health and well-being.

Then, we honor the late Nikki Giovanni with a replay of our 2009 conversation about Hip Hop Speaks to Children, celebrating poetry’s rhythm and its deep cultural roots.

“Hip hop is the vernacular turned into art—it’s gossip, rhythm, and rebellion rolled into one.” —Nikki Giovanni

Writers Voice— in depth conversation with writers of all genres, on the air since 2004.

Connect with Us: Follow us on social media to stay up-to-date on the latest episodes and news. Find us on Facebook at Writers Voice with Francesca Rheannon, on Instagram and Threads @WritersVoicePodcast or find us on Bluesky @writersvoice.bsky.social. Read transcripts at the Writer’s Voice Substack. 

Read the Transcript

Key Words: hypnotherapy, Daniel Fryer, self-hypnosis, Nikki Giovanni, Hip Hop Speaks to Children, hip hop history, poetry, mental health

Key Points:

Daniel Fryer:

• Hypnotherapy works by accessing the unconscious mind and implanting positive suggestions, bypassing conscious resistance.
• Concerns about losing control during hypnosis are largely unfounded, as the participant remains in control and can resist suggestions they do not want.
• Self-hypnosis can be as effective as going to a practitioner, and involves recording and listening to self-guided hypnotic inductions.
• Hypnotherapy is an effective therapy for a wide range of issues, including anxiety, depression, stress, pain control, and addiction.

“Hypnosis isn’t giving up control; it’s about reclaiming control over your mental habits and responses.” — Daniel Fryer

Nikki Giovanni:

• Hip-hop and poetry have shared roots in rhythm, cadence, and the African oral tradition of call-and-response.
• Nikki Giovanni’s poetry celebrates women’s strength, empowerment, and their central role in creation and life.
• The role of rhythm and cadence in storytelling and its cultural significance across generations
• Celebrating the democratic spirit of hip hop and its ability to transform deprivation into creativity

Enjoyed this episode? Share it and leave a review on your podcast app! Read an excerpt from Daniel Fryer’s How to Cope with Almost Anything with Hypnotherapy for practical tips.

In this episode, we dive into the world of eels with Ellen Ruppel Shell, author of Slippery Beast: A True Crime Natural History with Eels. From ancient mysteries and ecological importance to international crime syndicates and sustainable farming, Ruppel Shell unravels the fascinating and complex story of one of nature’s most enigmatic creatures.

The conversation traces the mysterious lifecycle of eels, their pivotal role in ecosystems, and their entanglement in a global black market. Ruppel Shell also highlights efforts to sustainably farm eels and the cultural significance of these creatures to Native American communities.

From Aristotle to the international criminal trade in wildlife, this episode offers a riveting exploration of eels and their connection to humanity.

Writers Voice— in depth conversation with writers of all genres, on the air since 2004.

Connect with Us: Follow us on social media to stay up-to-date on the latest episodes and news. Find us on Facebook at Writers Voice with Francesca Rheannon, on Instagram and Threads @WritersVoicePodcast or find us on Bluesky @writersvoice.bsky.social. Read transcripts at the Writer’s Voice Substack. 

Read The Transcript

Key Words: Ellen Ruppel Shell, Slippery Beast, eel lifecycle, global wildlife trade, freshwater eels, ecological importance of eels, eel farming, eel conservation, wildlife crime, ecosystems services

Key Topics

• The mysterious lifecycle of freshwater eels and their migration to the Sargasso Sea
• Eels’ ecological importance as predators, prey, and ecosystem engineers
• The global eel trade: poaching, organized crime, and unsustainable practices
• The decline of eel populations and its environmental consequences
• Efforts in sustainable eel farming and Native American conservation initiatives
• The paradox of human desire driving both exploitation and conservation

Key Quotes

1. “Eels are like the bottom block of a Jenga tower—remove them, and ecosystems collapse.”
2. “The illegal eel trade is the largest wildlife crime by dollar value, rivaling international drug cartels.”
3. “Nature assumed eels. They’ve been here for millions of years, shaping ecosystems in ways we’re only beginning to understand.”

If you enjoyed this episode, please share it on your favorite podcast app and leave a review.

In this special holiday edition of Writer’s Voice, journalist and author Petrina Engelke shares her journey exploring iconic American cuisine along Route 66, detailed in the book she co-wrote with food blogger Gabriele Frankemölle, Cook Across America: 66 Iconic Recipes Along the Legendary Route 66.

Engelke delves into the diverse cultural traditions that define American food, from maple syrup production in Illinois to fusion Tex-Mex dishes in Texas and barbecue’s African American roots. She also highlights the intersection of food, history, and climate change, discussing how environmental challenges threaten beloved traditions like winemaking and maple syrup harvesting.

“Barbecue is a testament to resilience, born from hard labor and innovation by enslaved African Americans.” — Petrina Engelke

Cook Across America is written for a German readership (Engelke reports on America for German news outlets) but our conversation is an engaging exploration of the many-splendored diversity that makes American food traditions so rich that any English-speaker can enjoy.

Writers Voice— in depth conversation with writers of all genres, on the air since 2004.

Connect with Us: Follow us on social media to stay up-to-date on the latest episodes and news. Find us on Facebook at Writers Voice with Francesca Rheannon, on Instagram and Threads @WritersVoicePodcast or find us on Bluesky @writersvoice.bsky.social. Read transcripts at the Writer’s Voice Substack. 

READ THE TRANSCRIPT

Key Words: Petrina Engelke, American cuisine, climate change, Cook Across America

Key Topics:

• The origins of Cook Across America and its connection to Route 66
• The diverse cultural influences shaping American cuisine
• Maple syrup production in Illinois and its climate challenges
• Barbecue’s Indigenous, African American, and colonial roots
• Tex-Mex fusion cooking and debates over “authenticity” in food
• The impact of wildfires and climate change on California winemaking

Learn more about Petrina Engelke’s work on her Substack blog Climate Culinarians and her journalism website. Happy Holidays!

If you enjoyed this episode, please share and review the podcast!

In this episode, Rebecca Nagle, journalist and author of By the Fire We Carry: The Generations’ Long Fight for Justice on Native Land, unpacks the history of the Cherokee Nation and broader Indigenous struggles for sovereignty.

Nagle intertwines personal family history with systemic injustices, tracing the consequences of the Trail of Tears, the Indian Removal Act, and the ongoing fight for Native land rights. She examines how these histories intersect with larger issues of capitalism, democracy, and climate justice.

The conversation also highlights recent landmark Supreme Court decisions and their implications for Indigenous sovereignty and U.S. democracy.

““If you think that lawlessness towards one group can’t eventually affect you, history tells us otherwise.” — Rebecca Nagle

Then, we continue our Thanksgiving week tradition of hearing Native American storyteller and ethnohistorian Marge Bruchac talk about the holiday from the Native point of view — and her re-telling of the Story of Corn.

Writers Voice— in depth conversation with writers of all genres, on the air since 2004.

Connect with Us: Follow us on social media to stay up-to-date on the latest episodes and news. Find us on Facebook at Writers Voice with Francesca Rheannon, on Instagram and Threads @WritersVoicePodcast or find us on Bluesky @writersvoice.bsky.social. Read transcripts at the Writer’s Voice Substack. 

Key Words: Rebecca Nagle, By the Fire We Carry, Indigenous sovereignty, Cherokee Nation, Supreme Court, Trail of Tears, McGirt v. Oklahoma, Native land rights, Indian Removal Act, democracy and genocide, environmental justice, Neil Gorsuch

Key Topics

• The legacy of John and Major Ridge and their controversial role in Cherokee history
• The Trail of Tears and its ongoing impact on Indigenous communities
• The Indian Removal Act: greed, violence, and the roots of U.S. capitalism
• Supreme Court cases Murphy v. Oklahoma and McGirt v. Oklahoma and their significance
• The resilience of Native sovereignty and environmental challenges
• Lessons from Indigenous struggles for addressing democratic backsliding

Timestamps

• [0:00] Introduction
• [4:35] Rebecca Nagle’s family history and connection to Cherokee Nation
• [12:15] The Trail of Tears and the Indian Removal Act
• [20 :30] Supreme Court cases Murphy and McGirt: reclaiming Indigenous land
• [25:45] Capitalism, environmental justice, and Native land exploitation
• [39:00] Democracy, systemic injustice, and Indigenous resilience
• [43:47] Lessons for today’s democratic struggles

Listen to or read an excerpt from Rebecca Nagle’s By the Fire We Carry.

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Summary

In this episode, Julie Sedivy, author of Linguaphile: A Life of Language Love, explores her profound relationship with language as both a scientist and a writer.

Sedivy shares her journey from a multilingual childhood to becoming a linguist, reflecting on the complexities of multilingualism, the emotional weight of language, and its profound ties to time, identity, and human connection.

She also delves into how language shapes our social interactions, cultural divides, and even our final moments.

“The last word my brother said was ‘love.’ And that’s what remains when everything else falls away.” — Julie Sedivy

Writers Voice— in depth conversation with writers of all genres, on the air since 2004.

Connect with Us: Follow us on social media to stay up-to-date on the latest episodes and news. Find us on Facebook at Writers Voice with Francesca Rheannon, on Instagram and Threads @WritersVoicePodcast or find us on Bluesky @writersvoice.bsky.social. Read transcripts at the Writer’s Voice Substack. 

Key Words: Julie Sedivy, Linguaphile, multilingualism, psycholinguistics, linguistics, aging and language,

Key Topics

• Sedivy’s multilingual upbringing and the influence of her cultural journey on her love of language
• The science and art of linguistics: exploring psycholinguistics and time-dependent language processing
• Misconceptions about multilingualism: debunking the “confusion” myth
• The emotional resonance of first languages versus learned ones
• How language differences contribute to cultural and political divides
• AI’s limitations in replicating the lived, human experience of language
• The intersection of love, loss, and language in Sedivy’s personal life and writing

Timestamps

• [0:00] Introduction
• [3:10] Julie Sedivy’s multilingual childhood and journey to linguistics
• [10:25] Misconceptions about multilingualism and the science of language learning
• [18:00] The emotional weight of first languages
• [25:30] Cultural and political divides reflected in language
• [35:20] Reflections on language, time, and mortality
• [44:15] AI and its disconnection from human experience
• [50:00] The enduring power of love and connection in language

If this episode resonated with you, subscribe, rate and review our podcast on your favorite podcast app!

Read an excerpt from Julie Sedivy’s Linguaphile: A Life of Language Love

Next Week On Writer’s Voice:

We spend most of the hour talking with Native American journalist Rebecca Nagle about her book, By The Fire We Carry: The Generations Long Fight For Justice On Native Land.

It’s a gripping account of the landmark Supreme Court ruling that recognized the sovereignty of tribal lands and the long and tragic history that led to it. Don’t miss it!

“When I first learned about the court case, long before it went to the Supreme Court, I felt this visceral sense of justice at the possibility that the land that my ancestors had died for could be recognized as Cherokee land for the first time in over a century.” — Rebecca Nagle

Summary

In this episode of Writer’s Voice, celebrated novelist Ann Patchett discusses the annotated release of her beloved novel Bel Canto, exploring how themes of love, art, and humanity resonate in times of crisis.

Patchett reflects on her writing process, the tenderness of her characters, and how art can provide solace in difficult times.

The, poet and activist Kathy Engel discusses her collection, Dear Inheritors, touching on the intersections of poetry, social justice, and the ongoing struggles against racism and privilege.

Engel’s work reflects on her life experiences and the contradictions of beauty and violence in society, emphasizing the importance of holding space for vulnerability, honesty, and collective healing. We last spoke with her in 2014.

Writers Voice— in depth conversation with writers of all genres, on the air since 2004.

Connect with Us: Follow us on social media to stay up-to-date on the latest episodes and news. Find us on Facebook at Writers Voice with Francesca Rheannon, on Instagram and Threads @WritersVoicePodcast or find us on Bluesky @writersvoice.bsky.social. Read transcripts at the Writer’s Voice Substack. 

Key words: Ann Patchett, Bel Canto annotated, Kathy Engel, Dear Inheritors, poetry, writing process, art and activism, podcast, Writer’s Voice

Key Quotes:

1. “Art is the point. In critical moments, art really does surge forward.” —Ann Patchett
2. “If we believe we are all connected, we are all of one life, all deserving of love and forgiveness.” —Ann Patchett
3. “I will not write a poem over the graves of children… Give me a language for the stem that loves the root fully.” —Kathy Engel

Key Topics:

• The power of art in times of crisis and Patchett’s reflections on the role of storytelling
• Annotating Bel Canto: Patchett’s process and insights on themes of time, tenderness, and resilience
• Engel’s Dear Inheritors: the struggle with privilege, white supremacy, and social justice through poetry
• The importance of vulnerability and connection in addressing social and personal conflicts
• Contradictions in beauty and violence in nature and human relationships

Timestamps:

• [0:00] Introduction
• [3:30] Ann Patchett on the inspiration for annotating Bel Canto
• [8:20] Exploring themes of time and humanity in Bel Canto
• [12:40] The role of art in times of social and personal crisis
• [20:15] Kathy Engel on Dear Inheritors: poetry, privilege, and activism
• [32:45] Confronting privilege and vulnerability through poetry
• [42:00] Nature, beauty, and violence in Engel’s work

In this thought-provoking episode, acclaimed author Olivia Laing shares insights from The Garden Against Time, exploring the concept of gardens as both physical spaces and metaphors for paradise, exclusion, and resistance.

Laing recounts restoring a historic garden and reflects on themes of ecological stewardship, historical gardens, and the philosophical tensions between control and collaboration with nature.

Their book juxtaposes the beauty of gardens with the historical darkness behind some, revealing how spaces of natural beauty have sometimes been exclusionary or rooted in colonial wealth.

We also replay our 2017 interview with Timothy Snyder about his book, On Tyranny: Twenty Lessons from the Twentieth Century. The book was intended as a kind of vaccine to inoculate us against acquiescing to authoritarianism.

Writers Voice— in depth conversation with writers of all genres, on the air since 2004.

Connect with Us: Follow us on social media to stay up-to-date on the latest episodes and news. Find us on Facebook at Writers Voice with Francesca Rheannon, on Instagram and Threads @WritersVoicePodcast or on Bluesky.

READ TRANSCRIPTS ON OUR SUBSTACK

Key words: Olivia Laing, The Garden Against Time, historical gardens, utopian communities, ecological gardening, Paradise Lost, environmental stewardship, gardening and mental health, public gardens, Timothy Snyder, fascism, Donald Trump, authoritarianism, resistance.

Key Topics:

• Restoring Mark Rumery’s historic garden: beauty, decay, and ecological stewardship
• The symbolic meaning of gardens as both paradise and places of exclusion
• Philosophical themes: the balance between control and natural growth
• Historical contexts of gardens, including Milton’s Paradise Lost and utopian communities
• Gardens as communal spaces and “commonwealths” against environmental and social challenges

Key Quotes:

1. “The garden is a time capsule as well as a portal out of time—a space that reminds us of the need for slower, ecological rhythms.”
2. “In a time obsessed with dystopia, Milton’s Eden offers an important reminder of hope, the possibility of imagining a better world.”
3. “What would it mean to make gardens that are inclusive, shared, and restorative spaces—a cherished commonwealth for all?”

Host’s Note on The Election & Timothy Snyder’s Warning

Gutted by the results of the election, I went in search of comfort. I found it in Rebecca Solnit’s powerful clarion call for solidarity. Listen to it here.

But, aside from building solidarity, to go forward, we need to also think about how we got here. So we replay our 2017 interview with historian Timothy Snyder, discussing the insights from his book, On Tyranny: Twenty Lessons from the Twentieth Century.

Key Topics:

• The dangers of American exceptionalism and historical complacency
• Lessons from Nazi Germany: Carl Schmitt’s “state of exception” and how tyrants exploit crises
• The risk of paramilitaries and privatization of military and police forces
• “Politics of inevitability” vs. “Politics of eternity”
• Importance of individual action: “Do not obey in advance”
• Building resilient institutions and protecting democracy

Key Quotes:

1. “If you say ‘it can’t happen here,’ you’re choosing not to act, making it more likely that it will happen here.”
2. “Democracy is not just about elections; it’s about how we choose to comport ourselves in between elections.”
3. “The idea of ‘the state of exception’ is central to how authoritarian regimes gain power.”

Keywords for SEO: Timothy Snyder, On Tyranny, American exceptionalism, democracy, authoritarianism, 20th-century history, preserving democracy.

In this episode, we speak with epidemiologist Caitlin Rivers about her book Crisis Averted. From the successful eradication of smallpox to navigating the COVID-19 pandemic, Rivers delves into public health challenges, funding gaps, and the “panic and neglect” cycle that threatens our preparedness for future outbreaks.

Host’s Note

We are less than a week away from the most consequential election in US history. A lot is at stake, including the fate of basic freedoms and democratic rights. But one huge matter life and death matter has gone largely ignored: the fate of our public health system.

Everything from access to clean water, life-saving vaccines, reproductive and maternal health, and so much more, is on the ballot — but few voters know that. That’s because public health — the infrastructure that keeps us safe and healthy — is the invisible half of our health care system. We only think about it when we are in danger, like during a pandemic, not when we are well.

The choices made for President and Congress in this election will determine whether we can meet challenges by strengthening our public health system — or whether we will fail because that public health system has been utterly dismantled.

The American Public Health Association has published a terrifying description of what would happen if Donald Trump is able to put Project 2025 into action — It was created by the most extreme members of his previous administration and widely considered to be the plans for his next, whatever he may deny. The report says, “while Project 2025 is aimed at the executive branch and intended as guidance for the next administration, many members of the U.S. House and Senate and those in state government support many of the policies proposed in Project 2025,” and are looking for ways to enact them.

Here’s just some of what the APHA warns about Project 2025:

• It would politicize the Centers for Disease Control, replacing scientific experts with political loyalists to Donald Trump and MAGA ideology. Project 2025 would cripple the use of data collection on disease outbreaks and prohibit it from issuing health guidance on vaccines and masks.
• Project 2025 would nationalize strict anti-abortion measures, including requiring states to report abortion data — meaning states would have to monitor women’s pregnancies. It also would limit or ban access to reproductive health care drugs like Mifepristone.
• Project 2025 would limit access to Medicaid: adding work requirements and capping benefits, which would disproportionately affect those with chronic conditions or disabilities, affecting the poor and disproportionately people of color.
• It would entirely privatize Medicare, skyrocketing costs — and profits to insurance companies — while limited access to seniors and people with disabilities
• Project 2025 would cripple our response to the climate crisis, ending government research on climate, stripping away environmental protections and encouraging the use of oil and fracked gas, putting the dangerous impacts of climate change on human health on steroids.
• And it would also privatize the weather service, so that Americans would have to pay to know if a hurricane or tornado was coming their way.

But we don’t have to speculate about the future impact of another Trump administration. Donald Trump already has a track record on public health, with his epic failures in responding to the Covid pandemic. He claimed the virus would go away “like magic.” He told Americans to drink bleach or take horse tranquilizers to cure it. He set governors of different states against each other competing for masks and medical supplies in a kind of Pandemic Hunger Games. He favored Red states over Blue states in providing funds.

If re-elected, Trump promises to put a purveyor of anti-vaccine lies—RFK Jr— in charge of the Health and Human Services and let him “go wild.” These are the stakes. Vote accordingly.

Episode Topics Covered

• Personal story and the challenges of twin-to-twin transfusion syndrome
• The eradication of smallpox and lessons learned
• Underfunding of public health and its consequences
• The “panic and neglect” cycle in public health
• New threats: Mpox and H5N1
• Public trust, transparency, and public health communication
• The balance between public health mandates and individual autonomy
• Advocacy for the creation of the CDC’s Center for Forecasting and Outbreak Analytics

Writers Voice— in depth conversation with writers of all genres, on the air since 2004.

Connect with Us: Follow us on social media to stay up-to-date on the latest episodes and news. Find us on Facebook at Writers Voice with Francesca Rheannon, on Instagram @WritersVoicePodcast or find us on X/Twitter@WritersVoice.

Key words: public health, pandemic preparedness, Caitlin Rivers, Crisis Averted, infectious disease, smallpox eradication, public health funding, CDC, public trust in health, Mpox, H5N1, health policy, epidemiology

Summary

In this insightful interview, Caitlin Rivers, epidemiologist and author of Crisis Averted: The Hidden Science of Fighting Outbreaks, discusses the complexities and triumphs of public health. She explores critical themes, from the eradication of smallpox to the lingering risks of pandemics and epidemics.

Rivers highlights key concepts like the “panic and neglect” cycle and the importance of continuous investment in public health infrastructure. Additionally, she addresses ongoing concerns such as the persistence of smallpox in labs, new threats like H5N1, and the delicate balance between individual autonomy and public health mandates.

Key Quotes:

1. “Public health is something of an invisible shield. It protects our health but is woven into our everyday lives in a way that does not often surface.”
2. “We are in a cycle of panic and neglect, where investments in public health surge during crises but dissipate once threats seem distant.”
3. “The eradication of smallpox is one of humanity’s greatest achievements, and it’s a reminder of what public health can achieve.”

Transcript

Caitlin Rivers, welcome to Writer’s Voice.

Thank you.

It’s great to be here.

This is a terrific book and such an important one because we really live in an era where public health is as important, if not more important than ever, because as you say in the book, some people call this a pandemic scene.

We are facing the possibility of more and more pandemics, epidemics.

And yet the public health system is so under threat.

But I want to begin by asking you about your own personal experience with which you begin your book, with a very difficult pregnancy with your twins.

Briefly tell us about that and then tell us what your story illustrates about public health.

Sure.

In 2018, I became pregnant with my identical twins, and many people don’t realize that identical twins are very risky, much more risky than fraternal twins because they share a placenta.

And this can lead to imbalances in the blood supply between one twin and the other, which is exactly what happened to us.

So I actually underwent two fetal surgeries, had multiple fetal blood transfusions and spent a long time on bedrest and in and out of the hospital trying to maintain the pregnancy and keep my twins as healthy as possible.

And thankfully, we did make it to 31 weeks, they were delivered at 31 weeks, which for our situation was probably better than we hoped.

But of course, left a long road ahead with about two months in the NICU and a lot of support from our medical providers to get my babies home and healthy.

And for me, this really illustrates the difference between the way that we experience health and well-being as individuals, and how it relates to public health.

So what happened to me with becoming pregnant with identical twins, which is not hereditary.

This is identical twins are completely spontaneous.

Becoming pregnant with identical twins, developing twin-to-twin transfusion syndrome, which is what we had, experiencing so many interventions and early delivery, the odds of this happening are so rare, astronomically rare.

And so when you see a statistic like one in a million or one in five million, you might think, oh, who cares?

You know, that’s never going to happen to me.

And statistically, that’s true.

But when it does happen to you, when you do experience something so traumatic and so engulfing, it really took up every second of my family’s lives and mental capacity.

When it happens to you, the statistics don’t mean quite as much, right?

Because you’re really in the thick of it.

And so I wanted to offer that story to my readers, because public health, when we’re thinking about millions of people and, you know, millions of lives saved, it can become abstract.

It can become a little bit difficult to really absorb what that means for families and communities.

And so I wanted to draw a line between my experience and how difficult it was for me and the way that public health can spare people from difficult experiences, maybe not identical to infrequency, but there are many afflictions and diseases that public health has really chased away from our daily lives.

And I think it’s really important to help people understand how meaningful that is.

And just to start with a huge success first, talk about smallpox and the eradication of it, the campaign to eradicate it.

How did it come about?

This really took a long time, but it is the only disease that has been completely eradicated.

What had to go right for that to happen?

The eradication of smallpox is really one of humanity’s greatest achievements.

It’s such an incredible success story.

Smallpox is a disease that listeners may not be familiar with because we no longer contend with it, but it is spread very easily from person to person.

It caused very large, painful, unsightly boils, basically, full-body rashes, and the mortality rate could stretch above 50%.

The average mortality rate was more like 10%, but you can imagine what a ferocious and fearsome foe that was to face a disease that had a very good chance of killing you.

After you survive, the survivors were likely to develop unsightly scarring, pocking, and eye problems and other sequelae were also very common.

One of the unique things about smallpox is that it didn’t circulate in animals.

It only circulated in humans, and there was also a very effective vaccine that could prevent it from spreading from person to person.

Now that characteristic is actually unlike, say, the flu vaccine or COVID vaccine, which can protect you from severe illness but will not likely stop transmission.

The smallpox vaccine was so effective that it did stop transmission.

Well, epidemiologists in the first half of the 20th century leveraged these two insights to set the intention to make the decision that they were going to pursue smallpox to the end of the earth.

They were going to set out to completely wipe it from humanity.

Now for the first several decades, actually, of the eradication campaign, they pursued this by maintaining at least 80% coverage of smallpox vaccination in every community in the world.

And you can imagine what an onerous undertaking that was.

That means vaccinating not just the vast majority of the world, but keeping those vaccination rates that high as new babies are constantly being born.

And so it was just an enormous undertaking to try to protect people and communities from this terrible virus.

Eventually, it became clear that although that strategy was effective in most places in the world, there were a few countries that it was just too difficult to maintain a level of coverage.

And so epidemiologists came up with an additional innovation, as if deciding to eradicate smallpox and getting so close was not amazing enough.

They realized that if they could visit smallpox cases quickly enough, if they could move quickly enough, they could vaccinate the people who had been in contact with that person and protect them from becoming infected.

This is called ring vaccination.

And this strategy required a lot of coordination, it required a lot of urgency, but it really was the key that allowed epidemiologists to travel that final mile and make that final push towards eradication.

And indeed, smallpox was declared eradicated in 1980, and there has not been a case since.

It’s an incredible story.

And you know, there were not a lot of people who thought it could be done until it was done.

But I have one question about smallpox, because the smallpox virus still does exist in two high-security labs, one in the United States, one in Russia.

Why is it being kept around, and could that pose an eventual risk?

This has been a continuous discussion in the public health community since eradication in 1980.

You’re exactly right.

There are two stores of smallpox remaining in the world, both in high-containment laboratories.

And the justification for keeping those viruses in those laboratories is so that scientists can continue to study the virus, and most importantly, try to develop new vaccines, treatments, collectively what we call medical countermeasures.

Now, this may seem like a low priority, given that there has been no cases of smallpox in nearly 50 years, but there are actually cousins of smallpox, including mpox, which you may have heard in the news over the last few years, which continue to circulate.

And actually, much of the research that has emerged from modern smallpox research has been leveraged into developing medical countermeasures, vaccines, and treatments against mpox.

And so there has been benefits from that over the years, and those benefits are what have kept alive the discussion or kept alive permissions that allow these labs to maintain smallpox stores.

I just worry that some unscrupulous regime will unleash it.

Is that really a realistic worry?

It’s realistic in the sense that the consequences, if that were to happen, would be very severe.

But I think the probability is very low.

And so you can see how difficult it becomes to weigh those two dimensions.

I will say there’s a WHO committee, World Health Organization committee, that oversees these two labs.

They conduct regular inspections to make sure that the proper security protocols and biosafety protocols are being adhered to.

And any experiments that either of these labs wish to conduct on the virus must first be approved by this WHO committee, which evaluates the risks and benefits.

So there are checks and balances in place to make sure that scientists are proceeding with appropriate caution and wisdom.

But there are and have been for decades calls by experts in the field to destroy those stocks.

And so I think it’s a very reasonable position to hold to feel that those should be destroyed.

Now Caitlin Rivers in Crisis Averted, you talk about many instances where competing needs, costs and benefits need to be balanced and weighed.

So let’s kind of move out for a minute, take a larger view of public health itself.

You write in the book that public health is the invisible other half of the health system.

You know, if you say one half of the health system is the medical infrastructure that we have, public health is the invisible part of our health system.

Because when it works, you don’t notice it.

We haven’t had smallpox, people forget what it’s like.

So we’re not necessarily thinking about that.

But there are many, many cases like that.

So it’s only when it fails that it becomes visible.

So first tell us, what is public health?

You talk about four major areas that comprise it.

That’s right.

Public health is something of an invisible shield.

It protects our health, but it’s woven into our everyday lives in a way that does not often surface or become visible in the same way that the medical system does.

So a few of the key areas of public health are infectious disease and epidemiology, which is my specialty, environmental health, which is really about protecting our environment and therefore human health from things like dangerous chemicals, pollution.

There is social and behavioral sciences, which really looks at the decisions people make.

If we’re thinking about how to encourage people to quit smoking or to reduce their alcohol intake, those are really behavioral changes that we need people to participate and buy into.

And so social and behavioral health examines how to partner with communities for that purpose.

And the fourth area is health policy and management, which really looks at the kind of legal and policy structures that we need to promote health.

If you’re wondering what all that means in terms of concrete implementation or concrete evidence of public health in the world around us, sanitation is perhaps one of the biggest changes to public health over the course of history.

When we turn on our faucets, clean water flows.

When we flush the toilet, waste is safely discarded.

And for a lot of human history, that was not the case.

And of course, sanitation is absolutely critical to prevent the spread of disease.

And it’s something that is now so common, so universal that we all take it for granted.

And yet this system that we depend on to protect the health of the public is severely under threat.

Just tell us what kind of resources go to public health and how do they compare to other things that we spend our public monies on?

Public health is perpetually underfunded, and it’s been a challenge for decades really to make the case for why it’s so important to continue to support public health and to provide it adequate funding.

The funding that goes to support public health is a teeny tiny fraction of what’s spent in the medical system.

But in my opinion, we have that entirely backwards because it’s public health that keeps people healthy.

We really only rely on the medical system in most cases when something has already gone wrong and you need to try to rebuild or restore health.

And so I think if we put a lot more attention and resources into public health, we would be able to really save money and improve the health of the population in a way that is a lot more cost effective.

Just to give you a sense, less money is spent on a per capita basis for public health than for things like parks and recreation, roads and transport, schools, nearly every line in a local community’s budget will be exceeded by every other priority compared to public health.

And I think there’s a lot of opportunity there to make some changes that could really benefit all of us.

Yeah, you, this is a shocking statistic is in your book, Caitlin Rivers, three out of every four Americans live in a state that spends less than $100 per person per year in public health.

That’s probably less than people spend on going out to the movies.

It really is incredible.

And when you think of the kinds of changes that public health has made, even in the last, say, 25 years, it’s clear that it’s very cost effective and we should be keen to invest in it more.

For example, the rate of people who smoke has declined precipitously since the 80s, and the diseases and the poor outcomes like lung cancer that have been averted from those changes is enormously beneficial and cost-saving, and I think we should promote that as much as possible.

Similarly, maternal and fetal health, close to in the same genre, if you will, of the health crisis that I experienced, although we’ve made enormous strides in protecting the health of pregnant women, fetuses, and babies in the last, say, 100 years, we still have one of the highest rates of maternal and fetal deaths compared to our peer countries.

Again, a lot of opportunity there to improve those statistics, which would not only improve the lives of those women and babies, but would also save a lot of money.

Yes, and these are issues that affect different groups of people differently.

Of course, we learned that in the COVID-19 pandemic when black and brown people and poor people were not able to isolate at home.

They had jobs where they had to go out into the community, were at much higher risk.

But these cases, these kinds of examples abound.

I mean, I just think of Flint, Michigan, and the crisis of lead in the water pipes, the contamination of lead in the water pipes there.

Talk about the determinants of health and give us some illustrations of things that people might not have thought about as being absolutely critical to boost the support for public health in order to prevent disease.

When we think about our individual health, we often think about things like our family history, our diet, our exercise, things that we have control over, at least in theory.

But one of the teachings of public health is that our ability to make decisions or the infrastructure context that influences those decisions are really influenced heavily by things that are outside of our control.

So things like our race and ethnicity, where in the world we were born, or even where in the United States we were born, our income levels, these are things that are actually enormously influential on our health.

So for example, I live just outside Baltimore City, and like Flint, Baltimore City has a persistent problem with homes, particularly low-income homes, being serviced by lead pipes.

There are also still, in the year 2024, efforts to remediate lead paint in homes, and lead paint has not been in use in the United States in decades.

The consequence of lead, particularly in homes that have young children, is it can cause permanent neurological damage, so it’s a very, very severe and troubling affliction, and the problem is really concentrated in low-income communities.

That is an example of how a determinant of health can really permanently influence the outcome and the health span of children who deserve every opportunity to survive and thrive in the world.

And we are talking with Caitlin Rivers about her very important book, Crisis Averted, The Hidden Science of Fighting Outbreaks.

You talk about a cycle that you call panic and neglect, or I believe it’s called panic and neglect in the field of epidemiology.

What is that cycle?

I specialize in outbreaks.

Panic and neglect is one of the strongest forces I have seen over my career in the way that we prepare for and respond to outbreaks.

The cycle of panic and neglect is what happens when something like the COVID-19 pandemic or like the 2001 anthrax attacks, which were deliberate, deliberate attacks in the United States.

These kinds of large events that shake us to the core, inspire a lot of action, a lot of investment, a lot of attention on public health, and that boost results in additional funding, additional support, new programs, it really drives a lot of energy in the field.

But what happens over time is those investments work.

We reduce risk, we avert poor outcomes, we really prevent bad things from happening.

And so, over time, the nothing, the all quiet calls start to draw down people’s attention and they think, what are we spending all this money for?

Nothing ever happens.

Why are we trying to prevent bad things from happening when of course there is nothing happening?

And the case starts to deteriorate.

It starts to really be difficult to justify.

But of course what happens when the funding and the attention recedes is the threat comes back exactly as you would expect.

And so the cycle begins again.

And we’ve seen this over and over again.

And every time it happens, what public health officials and public health professionals say is, if only we could maintain that level of funding and attention and not let it dry up, we could keep things in this state of relative improvement.

But of course that’s not what happens.

And so I think if there were one kind of structural or perspective change that I would want for the field, it would be to end the cycle of panic and neglect and really realize that continuous investment is what we need in order to prevent a huge number of the next threats.

Yeah.

And let’s talk a little bit about the COVID-19 epidemic because, well, it’s fresh in our mind and it is still not over, yet we don’t even have testing and tracing at any level that is free to the public anymore.

Why is that?

You know, it was terribly mismanaged under the former president, President Trump, but under the Biden administration, just about everything has gone away.

Why is that?

And what are your, what’s your judgment of that?

What is your comment?

It really does relate to this cycle of panic and neglect.

It really is in evidence everywhere all the time, unfortunately.

It’s true that during the pandemic, there were a lot of important investments made.

There were cash payments to families who were affected by the widespread closures.

There were programs to bring testing and vaccines for free, I might add, to really the whole country, but with a particular emphasis on low income or minority communities.

And several, I want to say two to three years into the pandemic, those programs just expired and they were allowed to end.

And so those really important investments that we made in reaching people and helping them to access the tools that they need to stay healthy just went away.

And of course, that leaves us enormously vulnerable, not only to the continuing effects of COVID-19, but to the next threat that is sure to roll through.

And that’s another point that I think is really important for readers to understand is the COVID-19 pandemic is widely understood as a once in a hundred year event, because the last major respiratory pandemic was in 1918.

From my perspective, as someone who specializes in outbreaks, epidemics, and pandemics, these kinds of events that really worry me and require attention and concerted effort to control happen about every two years.

And in fact, that is what we’ve seen.

COVID-19 started in 2020, and in 2022, we saw the Mpox epidemic.

And now here we are in 2024, and a variant of Mpox is again, really concerning me.

So right there, just a easy example that about every two years, there’s something quite serious that emerges.

A variant of Mpox?

That’s right.

The 2022 Mpox epidemic was caused by what’s known as clade 2, which describes the specifics of that virus.

And clade 2 spread around the world, primarily spread to men who have sex with men.

What we’re seeing now, two years later, is that a new type, clade 1b, again, just describing the characteristics of the virus, is really spreading very easily and quickly in parts of Africa, particularly the Democratic Republic of Congo.

And anytime we start to see an epidemic that’s really getting around very easily, it’s important to take notice because there’s a possibility that it could affect the United States.

And so that’s what I’m watching in my professional capacity as an epidemiologist right now.

And you haven’t yet mentioned bird flu, which, although by and large seems not to have the current variant of bird flu, H5N1, you know, largely seems to have been transmitted to the few human cases from animals.

However, there have been recently, because I read your newsletter, Caitlin Rivers, there have recently been some worrying transmission that doesn’t seem to have come from animals, although I’m not sure that’s been proven.

But that’s really the big epidemic.

So talk a little bit about bird flu and, you know, what’s in place to avert disaster or to warn us of it coming.

That’s right.

So H5N1, which is a particular type of influenza, has been circulating very widely in birds for years now, actually causing mass die-offs, occasionally spilling into animals like sea lions and causing mass die-offs.

And so I’ve had my eye on that situation in birds for a while now, but the situation really changed in an unexpected way this spring when H5N1 was found in dairy cows.

Now this is particularly striking because influenza is not known to infect cows.

That’s not its usual home.

And so this was a very unexpected and startling development.

And with influenza, my rule of thumb or my personal rule is never trust influenza because it loves to change, it loves to mutate, and it has long been identified as one of the candidates to cause the next pandemic.

And so this unexpected development really put me on edge.

Now as H5N1 has now been circulating not only in birds, but also in dairy cows, it’s had a lot of opportunities to interact, if you will, viruses don’t interact, but it’s found a lot of opportunities to find humans.

And so we’ve seen over the summer months and now into the fall, occasional cases of H5N1 in people who work with dairy cows.

But of course, the longer this is allowed to go on, the longer that the virus is allowed to circulate and try new things, the more opportunities it is to hit jackpot and find a way to spread easily between humans.

We have not seen that yet, but what we did see just recently is a H5N1 case in a Missouri person who was hospitalized, which right there makes me nervous because that suggests this person developed fairly severe illness.

But what was particularly striking is the person was not known to have contact with dairy cows.

Epidemiologists, even now, two weeks later, are not sure how this person got infected.

Even more unsettling is that several people who were in contact with this person, household members, healthcare workers, developed flu-like symptoms at the same time that they were sick.

Now, it’s a little bit of a puzzle, and this is one of the interesting things about epidemiology.

It’s very much detective work.

The close contacts were not tested.

We don’t know whether or not they had H5N1 because they did not get the test that could determine either way at the time.

And so epidemiologists are still puzzling together how did this person who was hospitalized become infected?

Did any close contacts also become sick, and what’s it all mean?

So definitely something that I’m watching closely and hoping that it kind of dies down and recedes, because that does happen sometimes, but of course a more concerning outcome would be if there’s evidence of human-to-human transmission.

Yeah, and it’s terrifying.

You write, Caitlin Rivers, in Crisis Averted, about the first SARS-CoV epidemic that was in 2003, where a pandemic did begin to happen, basically, but by and large was averted.

I mean, people died.

What did they do right there, and do we still have the capacity to do what they did?

In my mind, that was one of history’s near misses.

We came very close to experiencing a terrible pandemic in 2003 with the emergence of SARS.

SARS is actually a cousin of COVID-19.

They even have the name of the virus that causes each disease is even SARS-CoV and SARS-CoV-2, so that tells you how closely related they are.

But the original SARS caused much more severe illness, so you can imagine just how scary it would be if that had really made its way easily around the world.

But that’s not to say that it was a small event, because it was very serious, and we came very close to losing control.

It’s thought to have emerged in China, potentially in 2002, but it wasn’t identified until 2003.

And it was carried around the world, as viruses often are, by travelers, people who were traveling between countries, got to their destination, and a few days in, realized that they were actually quite ill.

Epidemiologists, fortunately, identified fairly quickly, I should say epidemiologists and astute clinicians, because doctors, nurses are very important partners in finding new diseases.

But they realized fairly quickly that there was a new disease afoot that was very dangerous, spread very easily between people, and they started coordinating with their counterparts around the world.

The first step, really, to getting this virus under control was case identification or finding people who were sick.

And so identifying exactly what the disease looked like in humans was one important component.

Now once epidemiologists and clinicians around the world were able to identify cases, and I should add there was not great diagnostic testing at the time, because this is more than 20 years ago, so a lot of it was just made based on signs.

A lot of the diagnoses were made based on signs and symptoms.

But that contact tracing that many people became familiar with during the pandemic became very important.

And so the people who were in contact with a case or with a person who were sick were very quickly, speed is important here, very quickly identified and quarantined or asked to stay home.

Another important distinction between SARS and COVID-19 is that during SARS, people were sickest, people were most infectious when they were sickest.

That’s an important, it sounds like a subtle thing, but it’s an important distinction, because with COVID-19, you can spread it without even knowing you’re sick, because you haven’t developed symptoms yet or because you have a very mild illness.

With SARS, it was mostly people who were hospitalized who were very infectious, and so infection control or really being cautious in hospital settings was also very important.

But there were hundreds of cases of SARS in something like 23 countries around the world, and so I really want to emphasize how close the world came to experiencing an absolutely devastating event.

And in the street there’s a virus, it’s affecting everyone, they ate a bat out in China, even people.

You know, there were differences, as you point out, I mean, this key one, that people could spread the disease without knowing that they were sick.

But let’s talk a little bit about the response.

Because you write a lot in the book, Caitlin Rivers, in Crisis Averted.

You write about the necessity of developing trust, of having people trust public health, public health officials.

Now we know that former President Trump tried to downplay the virus.

He famously said, yeah, it was going to magically disappear in a very short period of time.

But I kind of expected that from him.

It probably cost many, many lives.

But what I didn’t expect was, you know, some of the failings of the CDC in warning people, not just the CDC, but the World Health Organization, these are the people who are in charge of public health.

What did they get wrong?

One of the arguments that I make in my book is that the root of trust, you cannot move forward with trust without truth telling.

I think one of the biggest missteps with COVID-19, which I continue to see in responses today to MPOCS and H5N1, is a reluctance of public officials to be frank with the public about the severity of what is likely to come.

In the early days of the COVID-19 pandemic in the United States, we heard a lot of reassurances that the risk to the American public is low.

And again, as someone who specializes in epidemics and pandemics, I was looking very closely at the data coming out of China, for example, and it was clear to me that this virus was coming.

It was coming to our shores, and it would likely spread easily.

Because it did so, it had done so already in China and Italy, and then of course in New York City.

And so it was simply not true that the risk to the American public was low.

And I think that we really did a disservice to the American people by not telling them the truth about the difficulty of the situation that we were likely to face.

And those kinds of impulses to reassure or to obfuscate difficult truths is something that I think happens too often in public health.

And if there was one change to communication that I would like to see in my field, it’s really a move towards taking on those difficult truths and walking with people as we experience these kinds of tragedies together instead of saying, oh, it’ll be fine, don’t worry about it.

Or we don’t have any reason to believe anything is going to go bad when, in fact, it’s very likely that or at least there is some substantial risk worth acknowledging that things could be difficult.

And I was really disappointed in someone who otherwise, I think, deserves a lot of respect.

But I think this was emblematic of what you’re talking about, and that’s when Dr. Anthony Fauci went on television, and I watched it.

And he said at the time that not only should the general public not wear masks, that wearing masks could be counterproductive.

Now, before this interview began, I told you that I used to work in the field of occupational health.

I’m very well aware how effective masks can be if they’re worn properly.

And they can be worn properly.

It’s not that difficult a thing to do.

And I was really shocked that he would say that.

Now, why did Fauci say that?

And, you know, ultimately, he corrected himself, but I think there was a huge amount of damage to trust that happened as a result.

I think that’s a really important example.

And as you highlight, when Americans were originally told that not only did they not need a mask, but they should not wear a mask, there were a lot of spurious justifications that accompanied that.

You don’t know how to wear it if you haven’t been properly trained.

You’ll just touch your face and the risk of touching your face to adjust your mask will be worse than breathing contaminated air.

I think that all of these justifications were offered to back up the assertion that not only do you not need a mask, but you should actively avoid wearing masks.

In fact, I think there was a secret kind of secondary reason why people were told this, and that’s because there were not enough masks.

The supply chain was not designed to supply enough masks for 300-some million Americans to wear one every day, and so the masks that were in circulation were needed for healthcare workers who, of course, are at very high risk of becoming infected with COVID-19 or with any infection because they’re caring for people who were sick.

Now eventually, this did kind of come out, and the messaging was changed to say you can wear a mask if you want, but you should save the good ones for the healthcare workers.

And I think people, people being the public, really understood that justification, which was the true one.

We saw people choosing instead to wear cloth masks, even because many people, of course, were made to stay home from work and had a lot of free time, choosing to sew dozens or hundreds of cloth masks and distributing them.

I think once the ins and outs of the true situation were just shared, that the public really understood the need to save good masks for healthcare workers.

And again, this really points to the need to just always default to truth-telling.

Just lay out the uncertainties, the difficulties, the complexities, and trust that people are ready to listen and to be partners, I think, in keeping their communities safe and healthy.

Yes.

And I was one of those people who sewed masks in a project that we had here for local essential workers, yet they weren’t just cloth, because just cloth by itself doesn’t really do that much.

We actually sewed in medical-grade filters into the masks, and you know, I think they were quite effective.

But what that set up then was, I think it didn’t set it up, it allowed a huge politicization, it gave fuel to the fire of the right-wing culture war against public health measures that continues to today.

And you write about this, because this is always an issue, you know, public health versus individual autonomy.

You know, I remember people saying when I asked them to wear a mask that they would say, well, my body, my body, my right, you know, taking a page from the reproductive rights movement.

But there’s a difference between women’s power to control their own body, you know, the bodily autonomy and what you need in an epidemic.

So how do you negotiate that?

This is a really active legal area, actually, to really distinguish the line between where individual autonomy starts and where public health kind of picks up, obviously, in the case where your choices and actions can directly result in someone else being harmed through, for example, transmission of a virus, it becomes, that’s where the law does allow for public health officials with sufficient justification to impose, for example, mandatory quarantine or mandatory isolation, meaning you have to stay home.

But that is always a very last resort for public health because it’s contentious.

It can be difficult for the trusting relationship, obviously.

And so it really is a last resort.

But public health officials, particularly those at the local level, who spend a lot of time in their communities, are very skilled at building relationships with people, hearing their concerns, answering their concerns, and really making public health actions into a voluntary kind of whatever intervention is needed.

And actually, despite the highs and lows of mask wearing and later vaccination, what we saw in the early days of the pandemic was enormous compliance and enormous willingness to participate in things like voluntarily staying home, in creating cloth masks for the community, as you just described.

And so people really did pull together.

And I think that we should trust that people will rise to that occasion and really band together.

I’m not so sanguine, Caitlin Rivers, I have to say, because now this kind of distrust of public health is becoming institutionalized in laws in different states where public health measures have been, especially in Republican states, we have to say, I don’t think it’s happened in any states that are run by Democratic legislatures, but where public health measures are actually being criminalized or at least not allowed anymore.

And in Project 2025, which if Donald Trump does become president again, is likely to be the plan, actually seeks to prevent public health agencies from doing things like requiring vaccination in school children.

And this is at a time when we’re seeing outbreaks of measles and whooping coughs that get greater every year.

So talk about the road ahead.

And then I’m going to ask you to also talk about what can we do to change the political will to be able to fight against those restrictive measures?

I’m a perennial optimist.

It’s hard to do this job with any other perspective on life.

So I do tend to just hope, I guess.

I won’t say trust, but I tend to hope that this is a difficult moment in public health history, but that there is still enormous capacity for goodwill and wanting good things for our community and expecting that community members will participate in manifesting those good things.

But you’re exactly right that the pandemic created, and in some cases deepened, existing friction between public health and state legislatures, for example, because you’re exactly right that in many states there are efforts, some are already successful, in removing public health powers that have been granted to public health authorities, in some cases for a century or more, and are now being rolled back.

And I do think that that is a direct backlash of things like the stay-at-home orders and mandatory mask orders, mandatory vaccination, that the public really, some parts of the public, I don’t mean to imply that this was widely felt by everyone, but that some constituencies felt was overreach.

And it does worry me because it really degrades our ability to respond to and manage threats.

And what we’re talking about is the kind of institutionalism of this erosion of public health in one political party.

You say that politics is a part of public health.

And so, what can public health advocates do to do the politics right?

There’s been a refrain in public health over the last five or so years that we have to get politics out of public health.

And of course, this was a very reasonable reaction to things like the Trump White House involving itself in public health guidelines, for example, around school reopening, really interfering in the guidance-making process.

And so, that created an urgency or an imperative to separate political machinations from the creation of public health guidance.

But I argue in the book that I don’t think that’s entirely the right direction because politics and politicians are the ones who make and enforce laws.

They are the ones who hold the power of the purse, which is to say that they grant funding for things like public health priorities.

And so, I would actually like to see more engagement from my public health colleagues in political matters.

Because if we’re not out there making the case for why our work is important, why it deserves to be funded, then we’re not going to see the kinds of funding and authorities that we need to do our best work.

And so, I think that we should actually be leaning in more instead of endeavoring to separate the two worlds.

And Caitlin Rivers, finally, you are a good example of doing that kind of advocacy.

You advocated for the creation of the Center for Forecasting and Outbreak Analytics.

It was established under the first national security directive signed by President Biden.

What is that center?

What does it do?

The Center for Forecasting and Outbreak Analytics is the newest center at CDC, and it’s meant to be something like the National Weather Service, but for outbreaks.

It is meant to really create the kinds of advanced models and advanced analytics that decision makers, which could include federal leaders, state leaders, or even the public, rely upon to make decisions.

So examples of the kinds of products that this center creates are forecasts, what’s happening with outbreaks next, interventions, so you can test in the model different kinds of interventions.

What happens if we increase vaccination levels?

What happens if we encourage people to social distance?

You can really test those interventions in the model and see which is more effective.

And it is something that I’m really proud of.

My colleagues and I spent years advocating for the creation of this center.

And as you said, it was first established, or the directive was issued in 2021.

And it is now, I think, a really important piece of our pandemic preparedness capability.

Oh, it’s interesting you mentioned the National Weather Service, because another provision of Project 2025 is actually to shut down the weather service, to privatize weather forecasting, which would wreak havoc with preparing for tornadoes and hurricanes.

Are you concerned that that might happen to your newest Center for Forecasting and Outbreak Analytics?

Yes, the House budget for the last few budget cycles, and this is in Congress, has proposed very, very steep cuts to CDC and has zeroed out funding for the Center for Forecasting and Outbreak Analytics.

Now those budgets have not become law, they just remained in the House budget.

And those kinds of proposals to draw back public health funding is exactly what I was describing when I described the cycle of panic and neglect.

We create new capabilities, new investments, we create the Center for Forecasting and Outbreak Analytics, and then just a few short years later, it’s in danger of being defunded.

And I think that’s a real mistake.

Well, hopefully enough people will read your book so that they vote accordingly as well and they tell their representatives, their leaders, that they want public health to be supported.

The book is Crisis Averted, The Hidden Science of Fighting Outbreaks, and it has just been great to talk with you.

Thank you so much for coming on to Writers Voice.

Thank you for the opportunity.

In this episode of Writer’s Voice, we explore the intersections of personal and ecological narratives through two powerful interviews.

Francesca speaks with writer and musician Eiren Caffall about her memoir, The Mourner’s Bestiary, and naturalist Betsy McCully, author of At the Glacier’s Edge: A Natural History of Long Island from the Narrows to Montauk Point. These conversations explore the interconnectedness of environmental degradation and restoration, personal story, and the history of place.

Topics Covered:

• Environmental Parallels: How personal narratives of illness can reflect larger environmental crises.
• Climate Change and Coastal Resilience: Insights into Long Island’s history of glaciation and ongoing environmental restoration efforts.
• Ecological Restoration and Community: The importance of grassroots efforts in restoring and protecting local ecosystems.
• The Human Connection to Nature: How loss, grief, and recovery in our own lives can mirror those within the environment.

Writers Voice— in depth conversation with writers of all genres, on the air since 2004.

Connect with Us: Follow us on social media to stay up-to-date on the latest episodes and news. Find us on Facebook at Writers Voice with Francesca Rheannon, on Instagram @WritersVoicePodcast or find us on X/Twitter@WritersVoice.

Key words: marine ecology, Long Island Sound, Gulf of Maine, Eiren Caffall, Betsy McCully, global warming, climate change, PKD, Writer’s Voice, environmental memoir

Eiren Caffall: A Personal and Ecological Grief

Caffall’s The Mourner’s Bestiary intertwines her experience of living with polycystic kidney disease (PKD) with her deep concern for environmental issues, particularly the degradation of aquatic ecosystems.

Caffall describes how witnessing environmental collapse, such as the mass die-off in Long Island Sound in 1987, paralleled her family’s history with PKD. She uses this backdrop to reflect on the broader implications of how humans and the environment experience collapse and healing.

As Caffall states, her work seeks to “ground our understanding of what’s happening to the planet in something as physical as our own disease progress.”

Key Quote:

“I was born in a flooding body, on a flooding planet, in a flooding family.” — Eiren Caffall

Betsy McCully: Long Island’s Fragile Ecosystem

In At the Glacier’s Edge, McCully examines the natural history of Long Island and how human intervention has reshaped this delicate landscape.

From coastal erosion to the loss of barrier islands, McCully explores how unchecked development threatens not only human settlements but also diverse habitats.

She stresses the urgent need for sustainable practices to preserve Long Island’s unique natural history. As McCully explains, “Barrier islands were never meant to be built on… as the sea level rises, we are essentially erasing these natural systems.”

Key Quote:

“We are ourselves as a human species, in a way, being on an edge… a metaphor for how precarious our position has become.” — Betsy McCully

Transcript

Francesca Rheannon

This is Writer’s Voice Today, a Venn diagram of sorts, two books that share a look at the natural history of one of America’s richest waterways, the Long Island Sound. But one of those books adds a personal memoir of illness to natural history.

Eirenn Caffall

It was at that point that I realized I couldn’t write about the ecosystem from my perspective or my understanding without writing about my family and our bodies at the same time. For so many reasons. But part of it was because that connection felt impossible to avoid for me personally, but also because I think it’s an important way to ground our understanding of what’s happening to the planet in something as physical as our own disease progress, to be able to understand in a visceral way what it is that’s happening on the planet so that it’s not outside of us. Because it isn’t actually outside of us. Not for anyone.

Francesca Rheannon

We talk first with Eirenn Caffall about the Mourner’s Bestiary, which weaves together a literary memoir on loss, chronic illness and generational healing with the author’s stories of the creatures of two collapsing marine ecosystems, the Long Island Sound and the Gulf of Maine.

Later in the show, we talk with naturalist Betsy McCulley about her beautifully rendered portrait of the natural history of Long island at the glacier’s edge.

That’s all coming up on today’s Writer’s Voice, in depth conversation with writers of all genres on the air since 2004.

Thanks for joining us this hour on this station, your favorite podcast app, [email protected] I’m Francesca Rheannon.

Eirenn Caffl isn’t supposed to be alive.

Diagnosed at an early age with an inherited kidney disease called pkd, she was told she’d probably not make it past the age of 40.

Her disease has been a constant in her family for 200 years, and she’s the mother of a child who may inherit that legacy.

Illness and loss have been part of her family culture, but so has silence about them.

With her memoir, the Mourner’s Bestiary, Cathal eloquently breaks that silence, but she goes further, linking mourning on a personal level to mourning for the loss of the species she grew up loving in the Gulf of Maine and the Long Island Sound.

She reflects on what it means to inhabit a flooding body on a flooding planet and draws compelling parallels between the way disease alters bodies and how human actions disrupt the environment.

Her connection to creatures and ecosystems adds a profound layer to her story, exploring grief, survival and resilience.

Eirenn Caffel is a Writer and a musician, her writings on loss and nature, oceans and extinction has appeared in Guernica, Los Angeles, Review of Books, Literary Hub, and elsewhere. The Mourner’s Bestiary is out from Simon and Schuster.

Eirenn Caffel, welcome to Writer’s Voice.

Eirenn Caffall

Thank you so much, Francesca.

Francesca Rheannon

This book, the Mourner’s Bestiary, right up in the title, it tells you that it has something to do with animals and the natural environment and it also has something to do with confronting loss and death.

The book weaves the story of your own history of a genetic illness, pkd with the larger assault on the health of our waterways and our oceans from climate change and also from other forms of human assaults on the environment.

You say I was born in a flooding body, on a flooding planet, in a flooding family. What do you mean by that?

What do you mean by that?

Eirenn Caffall

Yes.

Well, I was born into a family that had over 150 year history of a genetic disease, polycystic kidney disease, that creates fluid filled cysts in the kidneys until the kidneys are overwhelmed and go into kidney failure. And the disease is really, it’s about flooding the body in a way that is unmanageable. So you have a relationship as a kidney patient to the way that your body processes fluid and water. And as a person with this disease, you spend a long time slowly filling up with unmanageable water. I had a family history of it. My father had it, his father and his father before him. And I watched the work of it on my dad’s body, the flooding planet. Obviously I was born into a planet already undergoing the processes of climate change. I was born in 1971. My mother was a hydrogeologist, so she began her training in that field when I was 10. And I came of age in this space where I was thinking a lot about water and what we were doing to water and waterways and how they worked and how they were changing. So it felt very much a part of my consciousness, not only of the landscape, but also of my body at the same time.

Francesca Rheannon

Now tell us more about the parallels you draw because they’re not just about being on a flooding planet, but you actually interweave the creatures, the bestiary of the title, into the story.

Talk a little bit about how you found the reflection of your own life in the creatures that you study.

Eirenn Caffall

Yeah, absolutely. I mean, I’ve joked with people before in interview situations that I really just wanted to have an excuse to write about fish because I grew up as a kid really obsessed with aquatic creatures and with whales and aquatic mammals. And so for a long time when I was trying to write this book, this has been something I’ve been working on for over a decade. At this point I really wanted to try to avoid writing about my body because I couldn’t make a one to one parallel between my genetic disease, which is not environmentally constrained or created, and the ecosystems that I was really interested in. And it seemed strange to weave the two of them together for a really long time until I got deeper into understanding the mechanisms of pollution and collapse and warming and the ways in which the kind of complexity that we’ve introduced into the ecosystem creates these extremely complex responses in the bodies of animals. And as I did that work as a researcher, as a science journalist, I started noticing that there were, I mean, they’re almost like little mirrors of what I understand about my disease and the ways in which the toxins building up in my own body mirror that toxic environment in aquatic ecosystems and in the bodies of animals. And so it was more that even though there wasn’t a one to one correlation, and my story isn’t my family got a disease from pollution that was involved in the environment, it was the systems and the mechanisms and the feelings of the connection between my body and the bodies of my non human kin were so evident in the language, in the scientific reference points, that it felt like I was creating something that was rhyming or mirroring anyway.

And it was at that point that I realized I couldn’t write about the ecosystem from my perspective or my understanding without writing about my, my family and our bodies at the same time. For so many reasons. But part of it was because that connection felt impossible to avoid for me personally, but also because I think it’s an important way to ground our understanding of what’s happening to the planet in something as physical as our own disease progress. To be able to understand in a visceral way what it is that’s happening on the planet so that it’s not outside of us, because it isn’t actually outside of us, not for anyone.

Francesca Rheannon

Yes, that’s so true. And I was really struck by that. When you talk about the mass die off in the Long Island Sound in 1987.

I live in East Hampton, New York and I live near a bay that’s on the Long Island Sound.

My favorite beach is there.

And I’ve been in this house since I was a teenager.

I’ve seen incredible changes over that time.

My mother lived here throughout and I can remember when I came to visit her after that mass Die off.

How totally transformed were the beaches?

Gone was the eel grass, and it’s applied so much habitat to animals. I haven’t seen a starfish on the beach since the 1980s, and I’ve seen only one horseshoe crab, which, you know, their malted shells just used to litter the beaches.

Eirenn Caffall

Oh, everywhere. Yes.

Francesca Rheannon

Talk about that as an example of what you were just saying.

Eirenn Caffall

Yeah. You know, I mean, I was lucky enough to have a grandmother that rented a cottage on the Long Island Sound for my whole childhood. And it was the same beach that my mother had grown up on since the late 40s. And so we had a generational relationship to that waterway that was really. You know, I don’t remember a time when I didn’t go to the Long Island Sound.

And I remember versions of it that no long longer exist, but that were incredibly formative. I remember the 70s version where you could find radial tires washed up on the shore in Connecticut, where you couldn’t swim because of red tides, because the jellyfish population had exploded. All of these signs and symptoms of a waterway that was getting sicker and sicker. And then 1987’s mass hypoxic event. I actually didn’t have a relationship to the sound at that point. We had stopped going to that beach. And so I learned about it afterwards in reading a really great book called this Fine Piece of Water, which is An Environmental History of the Long Island Sound that’s written by Tom Anderson. And in framing his understanding of the environmental history of the Sound, he talks about this event, which I went back to the sound later as an adult and saw it as this completely changed waterway, where, yeah, there wasn’t as much sort of what I remember about the vibrancy of that waterway, the way that you could find sanderlings on the. The beach all the time, constantly flooding the place, the way that you could find horseshoe crabs. And there were so many of them that you couldn’t even walk on the beach on some days.

That sound was gone. And in its place was this waterway that was trying desperately to come back from almost being completely destroyed. And the mass hypoxic event extirpated almost all the life in the sound, everything in the center of it. And so there was only life at the edges, closer to New York and closer to the Atlantic. And the last three decades have been about trying to return as much balance as possible to an incredibly destroyed ecosystem. For me, it was really similar to what had happened in my family life, because at that point in 1987 was kind of in A way the nadir of our family story when we were at a place where technologies were beginning to be available to save the lives of my family. But it wasn’t quite soon enough. And my father lost his brother and sister to the disease. He went through a failed transplant.

And so we were kind of experiencing this transformation that was going on in our family of just the worst version of our experience of illness. And at the same time, my mother was training to be a hydrogeologist who was looking at the waterways that had created the pollution event that created the hypoxia in the sound and kind of finding that moment and realizing that as a family, we’d been coming back from that worst case scenario through the help of enormous amounts of legislative support, medical innovation, and economic change.

At the same time, that the sound had been trying to rebuild from the same kind of almost evisceration of its entire existence was really fascinating to me and not something I would have understood unless I had been able to go back to that waterway and think about the version of it that I knew when I was a child.

Francesca Rheannon

Right. I mean, we’ve entered the era where we have to intentionally create the conditions to regenerate what used to be created by nature without any restrictions.

Eirenn Caffall

Yes.

Francesca Rheannon

And we are talking with Eirenn Caffel about her book, the Mourner’s Bestiary. It’s a memoir. It’s a book of natural history and an exploration of family dynamics in the face of mortal disease.

And so you mentioned the red tide, and I was struck. You say that red tides used to be part of a healthy ecosystem back in the days before the white settlers came and upended everything.

What happened to make the red tides go so out of balance?

Eirenn Caffall

I mean, in a word, really, it’s the mass industrialization of consumer life in America. And that starts as far back as the 1700s in New England, when we begin not only having destroyed the relationship of landscape that existed with the indigenous management of the ecosystem, but also we begin doing things like damming the rivers and creating factory structures on these huge waterways. The Long Island Sound especially, and this is true of the Gulf of Maine as well, which is another subject of the book. These are waterways that are fed by enormous watersheds full of rivEirenne ecosystems that pour into the waterways of the estuary in the Sound and of the Gulf in Maine. And everything that comes down those rivers comes into the estuary and changes it.

If you are suddenly doing hat manufacturing that requires mercury, or you’re producing copper, small parts for small manufactured goods, you’re starting to Change what’s in the silt and what’s in the land. And as you begin to industrialize farming and nitrogen becomes part of what you’re doing to enrich the soil enough to support mass agriculture, you’re starting to add nit nitrogen into the soil. And all the soil then sheds its nitrogen because it’s not a natural part of its soil ecosystem. And that goes down the rivers as well. And so what you’ve got is this incredibly over enriched space that is coming from all of the waterways. And at the same time you’re also seeing the increase in population in places like New York City and the problem of sewage and the problem of car pollution. And all of those things are changing the, the aquatic chemistry of the sound and allowing overgrowth of types of animals that used to be a part of the natural ebb and flow, the seasonal changes to the waterway.

A red tide was a way to rebalance the production of certain types of plankton. And when that gets out of balance and there’s this incredible overgrowth, you have these red tide events that are actually just incredibly toxic to fish life and can be toxic to humans as well. And it’s a sign of just this overabundance of incorrect chemical distribution that’s part of capitalism. It feels almost like you’ve got this capitalist output pouring into the sea and the sea can’t actually rebalance itself without these extremely drastic measures of something like a red tide.

Francesca Rheannon

Yes, exactly. Capitalism that forces a kind of overproduction in order to drive consumption.

Let’s talk a little bit about the personal side of this story.

Just going back to PKD.

You were diagnosed at the age of 24 and your first nephrologist told you that he knew how to end PKD in one generation.

What did he tell you and how did that make you feel?

Eirenn Caffall

Yeah, I was in his office and he said to me, oh, well, you know, you’re young. Are you considEirenng having children? And I said, I thought so. I would like to have children. And he said, I know how to end PKD in one generation. And I asked him how and he said, people like you should never have children.

And I mean, it was such a shock to my system at the moment because I mean, that’s.

I know what eugenics looks like. I had studied it in college. I knew that it was an absolutely horrifying thing that he was saying in this intimate space that was supposed to be about my care and my thriving and also my personhood. And I obviously never went back to him. But it reinforced a story that my family had told itself over the generations. You know, when the first of us had the mutation that created pkd, we started hiding it as a story. We didn’t talk about it publicly.

I actually took a long time to convince myself to write about PKD because it was so ingrained in me that we don’t reveal this because it’s so shameful. And we can mostly pass for a long period of our lives as healthy people because the safety net is not there for people like.

Like us, people with chronic genetic diseases. Especially in my youth, when I was diagnosed, there was still a preexisting condition clause that meant that I couldn’t get health insurance for many years until the Affordable Care act was created.

And so in that moment, I also was seeing the story of my family because my father’s brothers and sisters didn’t actually have their own biological children. One adopted. The others opted not to have children of their own because they were so cognizant of the pain that they had experienced as people with pkd, that they had seen their parents experience as parents of people with pkd. They made the voluntary decision to try to opt out of it. And my father and mother thought my father didn’t have the disease and decided to have me. And then when I was one, my father was diagnosed with the illness, and they never had any more kids. So it was the simultaneous horror that my personhood was being reduced to my genetic cost to society.

But also it felt very familiar, because the decision to have a child, the decision to try to claim my own right to exist, and the right to exist of people who are born with genetic disabilities, genetic chronic illnesses, felt like a really radical act, even within my own family.

Francesca Rheannon

Yeah. So say more about that.

Why did you decide to have a child, and what have you struggled with in terms of that decision?

Your son, Dex just comes across as such a wonderful child, a really sensitive being, someone who, very much like you, has been passionate about animals since a very early age.

You know, I wouldn’t have regrets, and I’m sure you don’t either.

Eirenn Caffall

No, I don’t. None at all.

And I think that the question that I was wrestling with was a question that so many people wrestle with, about whether their life matters enough, whether they matter. And I go back to. I’ve got a really good friend who works on questions of reproductive justice in the era of climate change. And the thing that she always says, and I love this so much, is that it’s not that people are asking themselves whether to have children in the face of climate collapse.

The children aren’t the question, the quest. The problem is that we’re asking ourselves that question anyway, as if denying ourselves our own existence, denying the existence of any children we might want to have is going to fix a problem that actually is not going to be fixed by individual choices and decisions.

And it was in watching my father die. I was, I was at his bedside taking care of him in hospice as the disease was claiming his life. And I was in my late 20s and I. I was with a good friend of the family who asked me if I wanted to have children. This is maybe five years after the conversation with that nephrologist. And I said I wasn’t sure and I didn’t know if I felt like I had the right. And she said, would you wish that your father hadn’t existed or that you hadn’t existed? And it was an instantaneous. Of course not. My father’s life was wonderful.

He had an incredible existence. He offered an enormous amount to the world. He was a great dad. And I didn’t feel like I could look at my own life and decide that I didn’t deserve to be alive. And so why was a genetic illness that could be treated, that could be healed, that could be managed. The disqualifying factor that seemed to me as if I hadn’t purged myself of my own eugenic notions of whether I was fit enough to be alive. And I feel it was an instantaneous and almost spiritual biological decision where I was like, oh, yes, no, I’m going to have a child. I’m allowed. Because I’d rather push back against this conversation that says that if you are not fit, you are less than if you are a drain on the, on the culture that you don’t get to exist because capitalism and the structures of it are a bigger drain on all of our future. And we don’t question them the same way that we question whether disabled people or people we just don’t happen to believe deserve resources, get to be here on the planet with us. It’s the wrong question. And I have not had a moment of regret of becoming a parent. We still struggle with the question of whether Dex is going to have pkd. He hasn’t been diagnosed yet. He’s waiting. I’m supporting that.

He doesn’t need to know until he wants to know.

And that’s an internal project that’s supported by lots of really good therapy and lots of really good soul searching and open conversations and has nothing to do with the value and the glory of his life or my life. And it felt like an important thing to say publicly in a way that I didn’t expect to do. I expected this to be a private story, but especially given what we’re all living through at the moment. It didn’t seem possible to talk about the way in which we write off whole ecosystems and whole species without talking about the way that we write off human beings as well, with this idea that somehow if we sacrifice the vulnerable, we’ll all be safer, which is never true.

Francesca Rheannon

And we are talking with Eirenn Caffel about her book the Mourner’s Bestiary.

Now I just have to ask you, how are you doing? Now?

You’re not supposed to be alive as you write at the beginning of the book.

Eirenn Caffall

Nope.

Francesca Rheannon

So how are you doing?

Eirenn Caffall

I’m doing really well right now, which is so surprising to me every day because not only did I expect not to be alive based on my early diagnosis in my 20s, but also I expected at this age to be experiencing what the rest of my family did, which was the ones that survived past 50 were all, at this point many years into dialysis or several years into a kidney transplant. And right now I am still using my native kidneys. I’m not on dialysis. My blood pressure is controlled.

And the reasons for that are really about innovations in access, good health insurance.

I’m married to a union organizer. We have Teamsters health insurance. It’s better than most of the people in the United States has. It’s enabled me to see a specialist who’s at the forefront of working towards medications that can change the outcome of my disease. I’m currently on one of those an experimental medication that is available globally but wasn’t available until about I’m forgetting the year that it was added to the FDA roster. But I’ve only been on it for four years, and it’s been transformative physically, and it’s slowed the progress of my disease down to almost nothing.

You know, I think that the story of my illness is really important for that piece, too. It’s not just the emotional resiliency or the decisions about resiliency, reproductive justice that come into my story, but it’s also about what each generation gets to experience in terms of innovation, if we can survive long enough to get to that point.

And for me, you know, this is a disease I manage. There are many symptoms that are deeply annoying.

My kidneys are six times their normal size. There’s a component to that that’s got Body shame involved in it. There’s physical discomfort that I experience. I definitely don’t have the stamina I did as a 20 year old. But the basics of what my disease looks like are so well managed at this moment in a way that the 22, 23 year old version of me just could not have imagined.

Francesca Rheannon

And just for our listeners who may be interested, what is that medication and is it available or is it still in experimental trials?

Eirenn Caffall

It’s available and it’s available to most patients who qualify with this stage of pkd. PKD is one of the most common genetic illnesses in the world. Actually, there are about statistics vary, but I’ve seen up to 12 million people who have the disease worldwide. And the medication that I take, the brand name is Genarq, but it’s also called Tolvaptin if it’s available in other countries as that. And I have to go through a specialized pharmacy and be enrolled in a program where I am routinely tested for negative side effects that do accompany this for some patients. But I’m part of a huge cohort of people who are all eligible for the disease. You need to be at a certain point in your disease trajectory to be able to go on it. But at that point they estimate that it slows your cyst’s growth by about 30%. And also some studies have resulted in stating that it can cut your pain experience because there’s a chronic pain element to the disease by about 40%.

So most people who have a nephrologist can ask about it if they’re not already enrolled, if they have this condition. And it’s for me, and it’s not true for everyone. Obviously results may vary, but for me and my disease progression, it has been life changing. It’s given me back a lot of energy and health that I didn’t have five years ago, even so. Yeah.

Francesca Rheannon

Wow. So glad to hear that. And I want to go back to something that you said earlier about the silence in your family.

Talk a little bit about how that silence impacted your family dynamics and then how you have made a completely different way of relating to your son. What’s been important to you about helping him prepare for dealing with the possible eventuality of finding out he has pkd.

I mean, you’ve mentioned you’ve supported his decision not to know until he has to, but what are some of the contrasts that you’ve made in your own decisions to be a model to your son from how it was in your own family?

Eirenn Caffall

Yeah, I mean, that’s such A great question. And I think that, you know, the more that I.

So I parented very intuitively and I approached my disease very intuitively. So I didn’t go through, I had great therapy, but I didn’t go through a kind of investment, investigatory process in terms of looking at the psychological impacts of this disease until I started writing this book. And what I understood intuitively from my family was that the more silence there was about our disease, the more we were separated from community, from support, from the care and healing that we needed to deal with the psychological impacts of it, the more that our grieving was private and internal, the less support and the less growth and the less care we had.

So from my diagnosis, I really started to try and think about what it looks like to be in a state of permanent mourning in relationship to my health and to think about how mourning is different than grieving. For me, I think of mourning as the public face of loss and the one that involves community and that involves a ritual and that can involve a joyful transition into living with, with loss.

I did that in my own life. I made sure that I, whenever I was afraid of what I might be risking as a person with this disease, if I tried something that I wanted to do, being a musician, being a writer, being a mother, I would try to remind myself that it was in the openness, to the fullness of my experience as a human being apart from my disease, that I had a better relationship to my disease.

My parents psychology in relationship to their loss turns out to be very, very common to people with our disease. There are a lot of really wonderful psychological studies that were done in the 70s and 80s that when I started reading them, was like a blueprint for what my family faced. And it was about the denial and the rejection of the story within the internal family system that was the real danger to how people psychologically coped with the long term effect of the disease. And so I started thinking of it as, especially because I was writing about climate when I was a new mother, that I was looking at the statistics and the, and the language around. How do we teach children about climate collapse or ecological collapse in a way that feels safe, appropriate to their age, manageable psychologically? How do we accompany them on the understanding of what is fearful that could come in their lifetime?

And it seemed to me that it was exactly the same as trying to teach someone that they might inherit a disease that could affect their health outcomes.

It was the same set of tools and the same set of skills, which was never lie, never say something age inappropriate for the kid, never resist the emotional upwellings of it. Be present, accompany the person through their understanding and their revelation and meet them where they are every time with the grace that you might be able to find.

And as I’ve done that as a parent about climate change and about kidney disease, it’s been challenging. For sure. There’s a lot of rest that is possible if you ignore things, you feel like you’ve got a nice, calm life. Certainly confronting the most difficult and dangerous things that can happen to you or your child is not relaxing sometimes. But at the same time, the intimacy and the trust that it fosters in terms of I see you, I know what’s scary. And also, look, it’s also very beautiful here.

Yes, we have a deadly disease. That’s terrifying. I’m so sorry. But also, your life is amazing and vibrant and look at all the things you get to do by being alive. And also this is universal. Something comes for everyone.

And so trying to I talk about it with my students a lot. You know, that what I’m trying to do with my book, with my writing, with my parenting, it’s the same. It’s building up a muscle that allows me to look at the things that are the most terrifying and then pull back and look at the things that are beautiful because I think it’s the muscle that we need. We’re not going to lose the tragedies of climate collapse or of generational illness or individual illness, but we are going to try to build up a consciousness that allows us to see both so that we can act from a place.

Francesca Rheannon

Of strength that’s so moving and so beautiful, as is this wonderful book, the Mourner’s Bestiary. Beautifully written, truly a book of the heart as well as a book about science. Eirenn Caffall, it has been such a privilege to talk with you.

Eirenn Caffall

Oh, thank you so much, Francesca. This has been an absolute delight.

Francesca Rheannon

Eirenn Caffall, you can find a link to a video excerpt from the mourners [email protected] Next up, a natural history of Long Island.

Stay tuned after the break.

That was the Water Song by the Incredible String Band.

Welcome back to Writer’s Voice. I’m Francesca Rheannon.

Betsy McCulley is a nature writer and historian. Her first book, city at the Water’s Edge, was a natural history of New York City.

With her new book, at the Glacier’s Edge, she’s expanded her view eastward to explore the natural history of Long island from the Narrows to Montauk Point.

McCulley’s book is a deep exploration of Long Island’s unique landscapes shaped by ancient glaciers and its delicate ecosystems now threatened by climate change and human intervention.

She shares the island’s geological past, the processes that shaped its coasts, and the ongoing battle to preserve its natural habitats against rising sea levels.

McAuley’s writing is animated by the credo she expresses on her website, New York Nature.

Whether we are urban, suburban, or rural dwellers on the land, we are part of the larger biological community.

Put simply, we share our living space with other living things.

Let’s listen to my conversation with Betsy McCulley.

Betsy McCulley, welcome to Writer’s Voice.

Betsy McCulley

Thank you very much for having me.

Francesca Rheannon

This is just a wonderful book. At the Glacier’s A Natural History of Long island from the Narrows, which is in New York City, to Montauk Point.

It is such a remarkable system.

First of all, it’s the largest island in the continental United States.

Tell us first about your own connection to Long Island.

Betsy McCulley

I moved to New York 1984, when my son was born, and I moved to Brooklyn, and we were in a community in Manhattan beach, which is on the water.

And as I was raising my little boy and I became interested in where I was living. And that came out of a sense of not feeling connected to a place. And I that sense of displacement when you’re moving from somewhere else to a new place.

And there was that sense of, well, how do I connect?

And to me, who’ve always been connected to nature, and here I am in an urban kind of neighborhood, I felt that the way to connect is through nature and through knowledge of nature. And I became curious about the place where I live.

Not just in the sense of the cultural human history, which is very important to know, I believe, but digging beneath all those layers of concrete and beneath the city and what was here before and who was here before and how did they live?

And I just delved deeper and deeper. So I embarked on a long journey to get to know the place where I lived. And I realized that Brooklyn is not just part of New York City, just a borough. It’s part of an island, Long Island.

Francesca Rheannon

And the title is at the Glacier’s Edge. So let’s start with the glacier that formed Long Island.

Tell us about that glacier.

You say that.

I mean, describe what it was like when there was a glacier and then when it retreated.

Betsy McCulley

Well, I tried to describe that in the first chapter. It’s always fascinated me, this sense that, hey, once this place was covered by ice. Well, Long island wasn’t completely covered by ice. New York City, Manhattan was. It didn’t reach all the way across Long Island. But to learn this glacial history, the glaciers advanced and retreated and really shaped and created Long Island. It was not an island always.

The ice itself sculpted the land, made the moraines and outwashed plain, the flats and the highlands of Long Island. So we understand the topography in terms of the glacial advances and retreats. It didn’t recede from the area till around 18,000 years ago and then took thousands of years melting back. And all that melting back, of course, sluiced all these melt waters that created what’s called the outwash plain and also has left us with an incredible sort of lacy network of streams and rivers and creeks and reservoirs and springs. So we’re a well watered island, you might say. What was south of the ice was tundra, just as you would see today, where glaciers still are, of course they are melting back. And that gets to one of the reasons of calling it at the glacier’s edge. And also having that first chapter be about the Ice Age, about Ice Age Long island is to capture that sense that the Earth has undergone these cycles of what they’re called like ice house and greenhouse cycles.

And of course we’re in a greenhouse cycle which has been accelerated by global warming.

So you have a natural cycle that has taken place many times over of warming and cooling, of glaciers advancing and retreating.

But we, our human activities are causing such accelerated warming that we can hardly predict just how devastating this could be in terms of, say, drowning so many of our coastal cities, a lot of low lying land as the sea level rises, not to mention communities all along the coastal areas, and not to mention the effect on all species.

I wanted to give this historical perspective which reading about the Ice age can give us and to humble us in the face of these huge natural processes and then to see how we are disrupting many of the natural processes.

And I get into that, into my chapters on shoreline development, for example, that blocks the natural migration of barrier islands and shores and marshes and dunes where our hard shoreline developments prevents their migrating as the sea level rises, they’re not able to do this kind of natural process.

We’re disrupting it.

Francesca Rheannon

You know what struck me, one thing that struck me? I live not too far from the Montauk Lighthouse, which is on the very tip of Long Island.

It used to be 300ft from the shore. From the ocean, it is now 50ft. 50ft. Where do you think it’s going to be by 2050?

Betsy McCulley

I think. Well, I Suggest in the end of that first chapter, as I’m standing on the cliff by the lighthouse and thinking about this very same thing, is where will we be? Well, underwater, at least the. Where the point is, we’ll probably be surrounded by water. They are trying to bulkhead all around the lighthouse, but those cliffs are falling away all around it.

So it could well become on an island or islanded.

But yeah, that’s the question I raise. Where will we be? And I like to put myself right there on the ground in the land, which is something I do. I walk those cliffs by the Montauk Lighthouse and. And I have observed over 20 years on the east end where the Montauk lighthouse is located, those bluffs eroding. And the scale of erosion is incredible. And it keeps increasing and it seems to be going faster and faster. So the old walkways now are completely gone. They’ve sort of crumbled and gone down to the shore, and they’re going to have to keep rerouting the pathways there because the cliffs keep collapsing at the edges. So there again is that idea of the edge glaciers, edge shoreline, edge coastal edges. And we’re ourselves as human species in a way, being on an edge, to use that as a metaphor.

Francesca Rheannon

So explain the process.

You know, you say that Long island was never meant to be built on.

Why? What do you mean by that? Talk about the process of migration, sand migration, how coastlines actually work, and why is it not a good idea to build on them?

Betsy McCulley

Well, I don’t say Long island was never meant to be built on. I say that the barrier islands were never meant to be built on. And I think this is probably true of all coastal barrier islands. And it’s astonishing to me how they continue to be built on, even knowing that the sea levels are rising faster than was predicted, say 10 years ago, that it’s accelerating, yet people continue to build.

I think that coastal retreat is eventually going to become a necessity.

The reality is sea levels are rising.

Our hard development on barrier islands and shorelines is preventing a natural sort of migration inland of barrier island and marshland. I should say I have a chapter given to our wetlands as well.

So they are getting drowned as well, the marsh islands, they have nowhere to go. So the sea level, the sea is simply reclaiming them.

So that’s what I mean by they should never have been been built on. But alas, the reality is they have been built on and are still being built on.

Yet what will happen in the future with those communities?

And I feel for. But I understand, I’M one who lived by the water myself in Manhattan Beach. So my heart breaks for people when I, for example, after hurricanes, and I see people whose homes were destroyed in a place that they love. So my heart breaks for people. So there’s an understanding, is what I’m trying to say, that I understand why we’re drawn to the sea, to living by the sea, but I don’t think we should be continuing to build by the sea.

Francesca Rheannon

And you do tackle this idea of hard armoring of the shoreline versus soft structures.

For example, in Montauk, again, in order to protect the resorts, the hotels that are right on the beach, the town and the Army Corps of Engineers built a very controversial armoring of the beach with geotextile bags, these enormous bags. People called it dirtbag beach, and people, in fact, protested it.

Why were they protesting? What’s wrong with those so called called soft structures?

And what’s wrong with, you know, building hard structures as well, like groins and the actual seawalls?

Betsy McCulley

Well, what happens is when you build groins and seawalls is, well, the groins especially, which are built out into the ocean perpendicular to the shore. They starve sand down the beach from downshore communities or downshore beaches. So they may be there to prevent the erosion of the beach in that particular place where they’re placed. But then they’re starving the shores further down, away from the groins.

So the hard structures do that. The dune project with the geotextile cores.

Some argue in the protests, among the protesters that these are not really soft beach structures, they’re hard structures. And that as soon as the storm comes along, they’re going to erode just the same. They’re not truly soft dunes like natural dunes, in other words. And in fact, the next storm did erode them.

The Army Corps of Engineers, I praise their work where they are doing some really excellent work, for example, in Jamaica Bay with the Marsh Islands trying to rebuild them. You know, they’re involved in many good projects, but there’s one huge project on the eastern end of Long island of about shoring up the shores, basically. And even they say that a project which extends from Fire island all the way to Montauk, and it’s designed to shore up the beaches with sand, lots of sand, that it’s not going to last forever, that eventually it will 10 years, 20 years, it will all be gone. They’d have to start over again.

So that’s where you get to the question of, well, maybe coastal retreat is the only solution if we wish to save our communities.

I make a point in the chapter, and this is all based on research and studies by specialists, and that is that sand is a finite resource, and we don’t think of it as such. We think that we can continually just rebuild our beaches. It’s called beach nourishment, and it’s thought of as quite benign. It’s soft shore development in that sense, but it can only go on for so long.

Francesca Rheannon

This is Writer’s Voice, and we’re talking with Betsy McCulley about her book at the Glacier’s A Natural History of Long Island. San.

And you actually also say that, well, it’s really not so fine because a beach is a living biome.

And so I’d like you to describe that biome and the kind of sand that is brought in. This dredged sand.

It’s like, you know, dumping something that has nothing to do with what was there before and pretending that it’s actually reclamation.

Betsy McCulley

It’s not the beach itself, of course. It’s another ecosystem. It’s that habitat, the living web of life.

We don’t think of the sands and the beach as being alive. You know, there are eroded grains of rocks that have eroded over millennia by the water.

But within those grains of sand, you have all what’s called myofauna, microscopic fauna. There is a living world within even the sands on the beach. So all those grains of sand, not to mention, of course, the whole. The interconnected web of species, from the barnacles on the rocks, you know, to the birds who forage in the kelp that washes up the seaweed, to the little crabs that dig their little burrows in the sand, and the fiddler crabs, so. So there is a whole world.

The beach is a living biome. We don’t think of it that sand underneath our feet. Well, we think, well, sand is just sand. So they just dredge some sand from offshore and dump it and think they’ve created a beach. Well, yes, it becomes a beach for beach walkers, for humans to use and rec for recreation. And that’s all very nice. And it’s something that they’ve done for a long, long time. Decades. You go back to Coney Island, Coney Island Beach. They have to replenish it every single year. And they’ve been doing this going back from the time the amusement park was created. You’re going back over a century.

So it’s a long, practiced thing that they have done to constantly re. Nourish the beach.

They call it beach nourishment for the sake of people and, and of course, I understand we want our beaches. We love our beaches. But we need to understand, too, the ecological costs of constant renourishment as sea level rises and erodes the beach. How long can we continue to do this with a finite resource?

Francesca Rheannon

This is Writer’s Voice, and we’re Talking with Betsy McCully about her book at the Glacier’s A Natural History of Long Island Sound.

You mentioned Nepeague Beach. I know it well. Nepeag was the word by the indigenous, I guess, Matauket people for drowned land.

So it was drowned at one point, and it will certainly be drowned again before centuries end, is the estimation.

It’s the low lying land that connects Amaganset, which is up on a bluff, to Montauk, which is also kind of hilly. But this is the part that’s in between.

You say Nepeak beach is one of only seven remaining undeveloped beaches on Long island, but there’s a huge controversy over it. I’d like to ask you about it, the truck beach controversy. There were a group of private homeowners who objected to the fact that there was.

I mean, when we’re talking about truck beach, we’re talking about a line of maybe 50 to 100 vehicles in the summer every day lined up on the beach. Not just vehicles, but of course, these monster trucks.

And I have always been opposed to driving on a beach because I think, first of all, it really destroys the peace and beauty of the beach for the other people who are there.

But it’s also, I cannot think that it is good for that living biome of the beach to drive on it. So weigh in on this controversy.

Betsy McCulley

Well, there had been a tradition going back decades that allowed working fishermen the rights to drive onto the beach.

However, the tradition came from a time before cars.

So, yes, fishermen were allowed to use the beach, but it was never expected that there would be cars driving on the beach eventually and really eroding it. That was another way of eroding a beach, by the way. Not to mention nesting birds, like piping plovers, whose nesting becomes disturbed, and they’ve been so disturbed to the point that they’re having to cordon off piping plover nesting areas to protect them. And then you get all this resentment from beachgoers, including the drivers who want to drive on the beach, and they don’t like the fact that there’s an area cordoned off to protect birds. But the problem was that once you allowed cars and cars became trucks, then what happened was in the height of summer, with people from out of town. These are not the traditional fishermen or shellfish gatherers that go back centuries on Long island and have a right to their livelihoods. These are tourists driving on the beach and it became a kind of trek party.

And of course that’s. That ruins the beach for not just other species, but of course for people who want that peace and quiet that walking the beach and walking by the water can give one, as you mentioned. Yeah, so that’s on the Napig, the Atlantic Ocean side of Napig. Whereas the harbor side is a much quieter place and happens to be my favorite place, place to walk. It’s an absolutely beautiful little beach set up against the walking dunes and fairly quiet.

Francesca Rheannon

It’s very beautiful there in the hither hills. And finally, I’d like to ask you, I mean, we’ve been talking about the terrible damage that humans have done to this really fragile and incredibly biodiverse ecosystem of Long Island.

You also talk about remediating the damage, restoring the land and the waters. What’s being done to do that?

Betsy McCulley

I think one, I mean, there are many, many things being done to answer your question directly to remediate the ecological damage that we have done.

And I wanted to tell these stories.

It gets to why I want to tell the stories of eco restoration and the people who do the eco restoration and recovery.

It’s habitat restoration, habitat recovery, and in some cases even habitat creation where possible.

As for example, rebuilding marsh islands in Jamaica Bay, rebuilding dunes, truly rebuilding dunes, not with geotextiles, but actually planting dune grasses and, and encouraging natural dunes. But I wanted to do this because I think we can become so devastated, depressed at the sense of loss and the sense of the damage we humans have done. The sense of loss as species are declining, going extinct. We live in the sixth era of extinction.

I wanted to balance, balance that negative.

The fact that we are capable as human beings of truly being destructive as a species on the planet. I wanted to balance that with the creative, compassionate roles that we may play as restorationists.

So yes, I tell various stories. For example, the Central Pine Barrens of Long Island.

It really took the work of people from the grassroots, local people who loved the Pine Barrens, who cared about the place. But it took years of advocating and being active for preserving that ecosystem, that habitat.

Another example is Hempstead Plains.

Often it starts with one person. In the case of Hempstead Plains, for example, Betsy Gulata was the person who really started the organization of group, a conservation group, to conserve whatever was left of our only prairie, the only prairie east of the Appalachians. It’s our little prairie that Long island used to have. It’s a little prairie now, but it was once 50, 60,000 acres in size. So they were fighting, even if it’s just a remnant that they’re fighting to save, is their efforts to restore, recover and protect. And so I wanted to tell the stories of what people can do so we don’t walk away feeling, oh, we’re damaging the earth beyond repair. Well, we have a creative role to play.

Francesca Rheannon

And there’s so many more stories in this book. Really a lovely book with so much information and so much heart. At the Glacier’s A Natural History of Long island from the Narrows to Montauk Point. Betsy McCulley, thank you so much for talking with us here about this book.

Betsy McCulley

It’s my pleasure. Thank you for having me.

Francesca Rheannon

Betsy McCulley’s book at the Glacier’s Edge is out from Rutgers University Press.

That’s it this week for Writers voice. Go to writersvoice.net to listen to or download past shows. Plus, find out more about our guests or read book excerpts.

Stay connected with Writer’s Voice. Find us on YouTube, Facebook X and Instagram. Just search on Writer’s Voice. I’m your host, Francesca Rheannon.