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Learning From Grief

Estimated reading time: 16 minutes, 34 seconds
Visiting Jan During COVID

Visiting Jan During COVID

Knowing What Needs to be Done and Doing It Are Not the Same

I held the cold cup of milkshake from Cranford Vanilla Bean Creamery, looking over at my wife, Jan, who sat beside me in the hospital room. The milkshake tasted terrific, but Jan had already expressed that she couldn’t drink. Trying to conceal my emotions, I observed her closely, knowing what would happen at 3 pm today. We were sitting in the familiar Overlook Hospital, a place I knew so well that I could navigate without asking for directions. Visitors even came to me for help. It was a reality I never imagined that my beloved wife would fall ill and that we would spend so much time in hospitals. Due to the COVID-19 restrictions, I couldn’t leave the room, so I offered to call the nurses’ station. Waiting was the only option, forcing me to chat with Jan as if everything would be OK. Despite the hard truth I knew, she did not.

Jan Lilien and Richard W. Brown, Wedding Day, August 9, 1975
Jan Lilien and Richard W. Brown, Wedding Day, August 9, 1975

In 1975, I married Jan and committed never to keep secrets from her consciously. Trust and honesty were the foundation of our relationship. However, there was one instance where I almost didn’t tell her the truth. Our older son, Jon, had planned a surprise visit for her 60th birthday party, and I didn’t want to ruin it. It was a moment of weakness, and I felt guilty about it, but I also knew how happy she would be to have both of her sons home. I knew that keeping secrets could lead to a breach of trust and harm our relationship.

But unlike that instance, it was not easy for me to keep a secret from her when we found out that there were no more options available to treat her Lymphoma and COVID. It felt like I was carrying a massive weight, and it was challenging not to tell her the truth. Whenever I looked at her, I realized that our time together was limited, and keeping such a big secret from her was painful. However, I knew it was necessary to wait until the arrival of my sons, Rabbi Renee and Dr. Saksena. It was a difficult time, but we found strength in each other and made the most of every moment.

The Previous Night – April 6, 2021

Three days ago, my wife Jan underwent emergency stent surgery, and I rushed to the hospital to visit her in the Intensive Care Unit. The previous three nights were a nightmare for me as I had stayed up all night, worried sick that I might lose her. However, in a miraculous turn of events, Jan underwent a midnight stent surgery that gave me the confidence that we had finally turned the corner. When I saw her at the hospital, I was relieved to find that she was no longer in pain and was her usual vibrant and engaging self. Although I was too exhausted to stand, I leaned in and kissed her lips, feeling the warmth of her love and the promise of her speedy recovery. Despite the challenges ahead, I was optimistic and determined to help her get back on her feet and recover as quickly as possible.

Last weekend, my eldest son, Jon, arrived from Portland, Oregon, on Saturday night. We had breakfast the following day before he left to see his mother. During our conversation, I expressed my concerns about Jan’s health, saying how weak she looked when she was last released and how much I was struggling to provide her with the necessary help. Jon listened attentively and agreed that we might need to explore other options, such as rehab or more intensive physical therapy at home.

After breakfast, I suggested scheduling a group call with Dr. Strair, one of her two oncologists, to discuss Jan’s health and explore possible treatment options. By including my sons in the call, we could all be on the same page and better able to help their mom recover fully.

Grateful for Jan's Love
Grateful for Jan’s Love

As I visited Jan, I noticed she was becoming more robust, so I postponed contacting Dr. Strair. However, Dr. Saksena visited Jan today and said, “I’m sorry you’re back in the hospital, but the stent has made a difference. How are you feeling today?”

Jan shook her head up, down, and sideways, then replied, “I’m OK, just extremely tired of being in the hospital and worried about the lymphoma returning.”

Dr. Saksena tried to comfort her by saying, “We’re in touch with Dr. Strair and his team, and we’re monitoring it constantly.”

Jan then asked, “How aggressive is it?”

Dr. Saksena replied, “It’s not where we would like it to be, but we’re exploring various treatment options.”

After hearing this, I realized I couldn’t postpone speaking with Dr. Strair any longer. I immediately texted him while my wife was napping in the hospital. I informed him that I was at the hospital with Jan and shared the details of Dr. Saksena’s visit. Jan asked if she would survive, and Dr. Saksena gave a realistic response. I then asked Dr. Strair when we could speak that evening. My main goal was to connect my sons to the call as soon as possible to get everyone on the same page.

Dr. Strair responded quickly, suggesting 7:30 pm that evening, which I agreed to. I then texted Jon and Mike to inform them of the details.

The Call with Dr. Strair – April 7, 2021

Walking towards the parking deck, I felt optimistic even though the Lymphoma had returned. I called Mike first, and he said he and Jon would step out onto his deck and join the call on the speakerphone since they were together.

As I eased my car out of the parking deck and started driving, I explained to Mike and Jon that I needed to pull over to the side of the road to call Dr. Strair. Dr. Strair answered my call on the second ring, and I introduced Mike and Jon to him.

I explained to Dr. Strair that we wanted to discuss the next steps in treating Jan’s Lymphoma and how to ensure her subsequent discharge goes smoothly. Dr. Strair welcomed all of us to the call and got straight to the point. He explained that they couldn’t effectively treat Jan’s Lymphoma due to COVID-19, and the Lymphoma prevented them from treating COVID-19. He stated that her Lymphoma was very aggressive, and they had tried three treatments, but the efficacy of each new treatment had declined. Dr. Strair said there was little they could do even without COVID-19.

As Jan’s Prius turned onto Shunpike, Dr. Strair paused momentarily. He then explained that the only option left for Janice was hospice. Jon asked if there was no other option, to which Dr. Strair replied no. Mike then asked how long Jan had left, and Dr. Strair suspected that she only had a few weeks to live.

Despite the tough conversation, we continued until the car reached its parking space. I thanked Dr. Strair for his honesty before the car parked itself and ended the call. I knew I needed to leave the car, but my legs felt like rubber. Suddenly, my iPhone rang, and it was Mike, saying he and Jon were on their way to be with me, “You should not be alone after hearing this news.”

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Mercury: A Novel

Read: January 2024

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Mercury: A Novel

by Amy Jo Burns

Today, I started reading Mercury: A Novel about a roofing family. The family’s bond of loyalty is tested when they uncover a long-hidden secret at the heart of their blue-collar town. The book is written by Amy Jo Burns, the author of the critically acclaimed novel Shiner, which I read and enjoyed in 2022. I highly recommend it.

The story is set in 1990, and it follows the journey of a seventeen-year-old girl named Marley West, who arrives in the river valley town of Mercury, Pennsylvania. She is a loner who is looking for a place to belong. The first thing she sees when she gets to town is three men standing on a rooftop, and they soon become her whole world.

Marley becomes a young wife to one of the Joseph brothers, The One Who Got Away to another, and an adopted mother to all of them. Marley guides these unruly men as their mother fades away and their roofing business crumbles under the weight of their unwieldy father’s inflated ego. Years later, an eerie discovery in the church attic causes old wounds to resurface, and suddenly, the family’s survival hangs in the balance.

With Marley as their guide, the Joseph brothers must decide whether they can save the family they’ve always known or build something more substantial in its place.

The Jan Lilien Education Fund sponsors ongoing sustainability and environmental awareness programs. Regarding gifts made this month, I will match dollar for dollar. All donations are tax-deductible.

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We Were Eight Years in Power

Read: September 2020

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We Were Eight Years in Power

by Ta-Nehisi Coates

We Were Eight Years in Power by Ta-Nehisi Coates is a collection featuring the landmark essay The Case for Reparations he wrote for The Atlantic. Even though I am a subscriber to The Atlantic and have read many of the pieces, this is a must-read book as it reflects on race, Barack Obama’s presidency, and its jarring aftermath, including the election of Donald Trump.

We were eight years in power as the lament of Reconstruction-era black politicians as the American experiment in multiracial democracy ended with the return of white supremacist rule in the South. In this sweeping collection of new and selected essays, Ta-Nehisi Coates explores the tragic echoes of that history in our own time: the unprecedented election of a black president followed by a vicious backlash that fueled the election of the man Coates argues is America’s first white president.

But the story of these present-day eight years is not just about presidential politics. This book also examines the new voices, ideas, and movements for justice that emerged over this period and the effects of the persistent, haunting shadow of our nation’s old and unreconciled history. Coates powerfully examines the events of the Obama era from his intimate and revealing perspective—the point of view of a young writer who begins the journey in an unemployment office in Harlem and ends it in the Oval Office, interviewing a president.

We Were Eight Years in Power features Coates’s iconic essays first published in The Atlantic, including Fear of a Black President, The Case for Reparations, and The Black Family in the Age of Mass Incarceration, along with eight fresh essays that revisit each year of the Obama administration through Coate’s own experiences, observations, and intellectual development, capped by a bracingly original assessment of the election that fully illuminated the tragedy of the Obama era. We Were Eight Years in Power is a vital account of modern America, from one of the definitive voices of this historic moment.

I recommend this book to all readers.

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The Field of Blood: Violence in Congress and the Road to Civil War

Read: March 2019

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The Field of Blood

by Joanne B. Freeman

The Field of Blood: Violence in Congress and the Road to Civil War by Joanne B. Freeman, Professor of History and American Studies at Yale University, is a must-read in our hyper-partisan times. The partisanship and divisiveness of the period before the Civil War have many parallels to our time, and the difference is the violence of the Civil War era. Professor Freeman recovers the long-lost story of physical violence on the floor of the U.S. Congress.

She can do this by first source materials from Benjamin Brown French. He was never elected to office but was an acquaintance of twelve consecutive presidents, from Andrew Jackson to Ulysses S. Grant. In addition, he maintained a diary for forty years that highlighted the violence and his and the nation’s political transformation.

During much of this period, he was the Clerk in the House.  His diary documents the violence that did not get covered by the press. Legislative sessions included mortal threats, canings, flipped desks, and all-out slugfests. When debate broke down, members of Congress drew pistols and waved Bowie knives. One representative even killed another in a duel. Many were beaten and bullied in an attempt to intimidate them into compliance, particularly on the issue of slavery.

The Field of Blood is one of four books I purchased after my first One Day University class.

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Victory City: A Novel

Read: February 2023

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Victory City: A Novel

by Salman Rushdie

Victory City: A Novel by Salman Rushdie is an epic tale of a woman who breathes a fantastical empire into existence, only to be consumed by it over the centuries from the transcendent imagination of Booker Prize-winning, internationally bestselling author Salman Rushdie. It is well written and was a page-turner from page one to the end. I highly recommend this novel and encourage everyone to read it.

Brilliantly styled as a translation of an ancient epic, this is a saga of love, adventure, and myth that is a testament to storytelling’s power. After witnessing her mother’s death, the grief-stricken Pampa Kampana becomes a vessel for the goddess Parvati, who begins to speak out of the girl’s mouth. I was hooked when Pampa Kampana provided the seeds that created Victory City out of thin air.

David Remnick’s interview with Salman Rushdie in The New Yorker provided background I would have missed.

“The first kings of Vijayanagara announced, quite seriously, that they were descended from the moon,” Rushdie said. “So when these kings, Harihara and Bukka, announce that they’re members of the lunar dynasty, they’re basically associating themselves with those great heroes. It’s like saying, ‘I’ve descended from the same family as Achilles.’ Or Agamemnon. And so I thought, Well, if you could say that, I can say anything.”

Above all, the book is buoyed by the character of Pampa Kampana, who, Rushdie says, “just showed up in my head” and gave him his story, his sense of direction. The pleasure for Rushdie in writing the novel was in “world building” and, at the same time, writing about a character building that world: “It’s me doing it, but it’s also her doing it.” The pleasure is infectious. “Victory City” is an immensely enjoyable novel. It is also an affirmation. At the end, with the great city in ruins, what is left is not the storyteller but her words:

I, Pampa Kampana, am the author of this book.
I have lived to see an empire rise and fall.
How are they remembered now, these kings, these queens?
They exist now only in words . . .
I myself am nothing now. All that remains is this city of words.
Words are the only victors.

The Goodreads summary provides a brief overview,

In the wake of an insignificant battle between two long-forgotten kingdoms in fourteenth-century southern India, a nine-year-old girl has a divine encounter that will change the course of history. After witnessing her mother’s death, the grief-stricken Pampa Kampana becomes a vessel for the goddess Parvati, who begins to speak out of the girl’s mouth. Granting her powers beyond Pampa Kampana’s comprehension, the goddess tells her that she will be instrumental in the rise of a great city called Bisnaga–literally victory city–the wonder of the world.

Over the next two hundred and fifty years, Pampa Kampana’s life becomes deeply interwoven with Bisnaga’s, from its literal sowing out of a bag of magic seeds to its tragic ruination in the most human of ways: the hubris of those in power. Whispering Bisnaga and its citizens into existence, Pampa Kampana attempts to make good on Parvati’s task: giving women equal agency in a patriarchal world. But all stories have a way of getting away from their creator, and Bisnaga is no exception. As years pass, rulers come and go, battles are won and lost, and allegiances shift, the very fabric of Bisnaga becomes an ever more complex tapestry–with Pampa Kampana at its center.

The Jan Lilien Education Fund sponsors ongoing sustainability and environmental awareness programs. Gifts made this month; I will match dollar-for-dollar. All donations are tax-deductible.

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Invisible Child

Read: December 2021

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Invisible Child: Poverty, Survival & Hope in an American City

by Andrea Elliott

Invisible Child: Poverty, Survival & Hope in an American City by Andrea Elliott was a gift from my son Jon. The New York Times selected “Invisible Child” as one of the best books published this year. It is indeed one of the top books on my all-time list.

GoodReads summary provides a good overview,

The riveting, unforgettable story of a girl whose indomitable spirit is tested by homelessness, poverty, and racism in an unequal America—from Pulitzer Prize-winning journalist Andrea Elliott of The New York Times

Invisible Child follows eight dramatic years in the life of Dasani Coates, a child with imagination as soaring as the skyscrapers near her Brooklyn homeless shelter. Born at the turn of a new century, Dasani is named for the bottled water that comes to symbolize Brooklyn’s gentrification and the shared aspirations of a divided city. As Dasani grows up, moving with her tight-knit family from shelter to shelter, this story goes back to trace the passage of Dasani’s ancestors from slavery to the Great Migration north. When Dasani comes of age, New York City’s homeless crisis explodes as the chasm deepens between rich and poor.

In the shadows of this new Gilded Age, Dasani must lead her seven siblings through a thicket of problems: hunger, parental drug addiction, violence, housing instability, segregated schools, and the constant monitoring of the child-protection system. When, at age thirteen, Dasani enrolls at a boarding school in Pennsylvania, her loyalties are tested like never before. As she learns to “code switch” between the culture she left behind and the norms of her new town, Dasani starts to feel like a stranger in both places. Ultimately, she faces an impossible question: What if leaving poverty means abandoning the family you love?

By turns heartbreaking and revelatory, provocative and inspiring, Invisible Child tells an astonishing story about the power of resilience, the importance of family, and the cost of inequality. Based on nearly a decade of reporting, this book vividly illuminates some of the most critical issues in contemporary America through the life of one remarkable girl.

Jan and I were involved and knew that child poverty and homelessness needed repair. In addition, Jan lived on Washington Park across from Ft. Greene Park in 1974-75. We knew the neighborhood where much of the book’s story takes place. 

Before meeting Jan in 1973, I was both a community/tenant organizer and a youth worker. In the latter role, I made weekly hostel trips for eight to ten young boys from East Williamsburg during 1973. The trips were the first the boys had ever been outside of their neighborhood.

Many of them had imaginations like Dasani. They also had her instinct to fight. One of my first tasks was to check for any weapons.

Decades later, when I would see any of them, now adults, they would ask when we were going on another trip. I wish I had met Jan when I made those trips. She would have helped me improve them and document the impact. If I could re-write history, I would have her join me as the second adult on the hostel trips.

After that summer, it was clear my primary skills were as a community/tenant organizer. Over the next few years, my work focused on creating affordable and supportive housing.

Jan and I did meaningful work that made a difference, yet the need for a permanent solution to the crisis remains. The book highlights the crucial role of resilience, the importance of family, and the cost of inequality. As a nation, we cannot undermine those values by breaking up families, impeding resilience, and maintaining racial and economic inequality. 

The current debate in Washington over the Build Back Better legislation needs to focus not on how much we spend but on its impact on children and families. 

David Brooks, a conservative commentator, has supported these expenditures for what they can do to address this country’s cultural and economic crisis. 

These packages say to the struggling parents and the warehouse workers: I see you. Your work has dignity. You are paving your way. You are at the center of our national vision.

This is how you fortify a compelling moral identity, which is what all of us need if we’re going to be able to look in the mirror with self-respect. This is the cultural transformation that good policy can sometimes achieve. Statecraft is soulcraft.

If you can only read one book this year, this is the one to read. Child poverty, homelessness, and inequality impact all of us. Ending child poverty and homelessness will make us a healthier and more inclusive nation. It is time for a compelling moral call to action!

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Midwives

Read: June 2022

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Midwives: A Novel

by Chris Bohjalian

Midwives by Chris Bohjalian is “a compulsively readable novel that explores questions of human responsibility that are as fundamental to our society now as they were when the book was first published.” Forty years after the book was published, it is just as relevant, if not more so. Indeed, the book’s topics are more relevant today with the current set of decisions by the Supreme Court.

After reading The Pull of the Stars and watching every season of Call the Midwives, this was the logical next book for me to read. It is also one that I know Jan read and liked. 

I highly recommend this book!

The Goodreads summary provides a concise overview. 

The time is 1981, and Sibyl Danforth has been a dedicated midwife in the rural community of Reddington, Vermont, for fifteen years. But one treacherous winter night, in a house isolated by icy roads and failed telephone lines, Sibyl takes desperate measures to save a baby’s life. She performs an emergency Caesarean section on its mother, who appears to have died in labor. But what if—as Sibyl’s assistant later charges—the patient wasn’t already dead, and it was Sibyl who inadvertently killed her?

As recounted by Sibyl’s precocious fourteen-year-old daughter, Connie, the ensuing trial bears the earmarks of a witch hunt except that all its participants are acting from the highest motives—and the defendant increasingly appears to be guilty. As Sibyl Danforth faces the antagonism of the law, the hostility of traditional doctors, and the accusations of her conscience, Midwives engages, moves, and transfixes us as only the best novels ever do. 

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