Human Frailties

The publication of Laura Hillenbrand’s book, A Literary Ending, inspired a global resurgence of interest in prion diseases, many of which had been previously misdiagnosed and mislabeled as a rapid progression of Alzheimer’s or other neurological conditions. Without the book, the children and grandchildren of those afflicted with Fatal Familial Insomnia would have found it incredibly difficult to distinguish the subtle boundaries between these conditions unless they had been genetically tested early in life. While a simple blood test had eventually become all that was necessary to predict the onset of Alzheimer’s, the search for a rare, specific mutation like FFI had historically remained a mystery.

Realizing that Hillenbrand’s work was a catalyst for her own survival, Jen set out to become a prominent spokesperson for the disease and the book. She even went as far as to add a subhead to her own “Unbroken” title, proudly printing “Lab Rat” on the T-shirts she wore while volunteering her veins and body to any test program or clinical trial that might lead to a cure.

Through Cheryl’s enduring friendship with Sabina Wister, Sharon was introduced to the Wister Institute’s Dr. Chengyu Liang, the Co-Leader of the Molecular and Cellular Oncogenesis Program. Dr. Liang was deeply familiar with FFI and had already appeared in Hillenbrand’s early notes, as his laboratory was recognized for its pioneering study of autophagy—the process by which cells consume their own cellular waste. It was the exact cellular machinery Sharon believed she needed to rid prion proteins from her sister’s brain.

Dr. Liang subsequently introduced Sharon to Dr. Maureen Murphy, the Director of the Cancer Center, whose research focused on cellular responses to stress and the genetic instructions required to prevent misfolding. Although FFI was not a target of Murphy’s current research, after speaking with Sharon she contacted the Institute’s chemist, Dr. Joseph Salvino—a specialist in small molecule discovery who designed the precise “molecular bullets” needed to hit the targets Sharon had first identified in her lab at Johns Hopkins. Through this fortuitous introduction, Sharon was hired to work alongside Salvino to build an AI-driven protein model designed to completely silence the mutant FFI gene.

Sharon called her mother immediately after leaving Salvino’s office, giving her the joyful news that she would soon be returning home from Baltimore. She followed it up by contacting Laura Hillenbrand, who, unfortunately, was once again bedridden.

“It seems like the demands of completing the book and working with the filmmakers on the screenplay have taken their toll on me,” Laura said, her breathing heavy over the line. “I’m finding it difficult to swallow, and I’ve lost weight. Even the light from my computer screen is painful. But I am so glad to hear that you are doing well, Sharon. I also heard that your sister has scored a massive success with her new book, Lab Rat.”

“She’s tearing it up with all kinds of projects,” Sharon responded warmly. “Much of it even overlaps my research on FFI. With her lectures, proactive work on promoting genetic testing, and her book signings, she’s beginning to get picked up on the talk show circuit. She is truly making the most of her young life. Hopefully, I can help her extend her term on Earth by a few decades. I also read that the movie will be ready for release this coming August, starring Jeremy Strong and Jessica Chastain as my parents. I don’t quite see Mckenna Grace as me, though. She’s far too pretty. But Madeleine McGraw is a great pick for Jen.”

“They fictionalized the ending,” Laura noted somberly. “I really had no control over the screenplay, except on the technical aspects of the script.”

“I thought your epilogue was great, Laura. It allowed Jen, Mom, and me a lot of latitude for our futures. I don’t know if you heard, but Mom is planning to tour France with Sabina.”

“No, I hadn’t heard that,” Laura responded softly. “I haven’t spoken with your mother in quite a while.”

“Well, like Jen, she’s busy and seems genuinely happy.”

“I’m glad to hear that... but if you’ll excuse me, Sharon, I really am exhausted and need to rest. Goodbye.”

“I’ll call you next week, Laura. And, by the way, thanks again for everything you’ve done.”

An Update: March 2029

By the spring of 2029, a definitive cure for FFI had not yet been found, though it seemed hopeful that one was finally on the horizon for those who carried the deadly mutation. A massive breakthrough did, however, arrive for patients suffering from Chronic Fatigue Syndrome (ME/CFS)—the very condition that had kept Laura Hillenbrand and many others like her bedridden for most of their adult lives.

The breakthrough came from the dedicated research of Dr. Sharon Halpern and her team at the Wistar Institute, collaborating with bioengineers from Johns Hopkins. Together, they developed a capsule-like, remotely charged micro-stimulator embedded beneath a patient’s skin near the collarbone. Unlike preexisting handheld models that offered only limited relief, this new device provided perfectly timed bursts of parasympathetic tone that drastically reduced inflammation of the vagus nerve.

“Although we still have not been able to target the specific virus or gene that affects the nerve,” Dr. Halpern explained in an interview, “we found a solution that silences, or jams, the negative signal through a continuous bombardment of electrical pulsations. Ironically, years back when the medical community believed the syndrome was entirely psychosomatic, they were technically right that the problem was neurological—but instead of being caused by a lack of willpower, the condition was actually a wiring problem in the brain.”

Fortunately for Laura, her symptoms completely disappeared after receiving the implant, enabling her at the age of 62 to return to her lifelong passions of tennis, horseback riding, and active journalism. Laura Hillenbrand’s highly anticipated memoir, It Was All In My Head, was scheduled for release by Penguin Random House in July 2030.

In a glowing pre-review for The New York Times, critic Jonathan Smoot wrote:

It Was All In My Head is a surprisingly humorous and triumphant account of the author’s life as she dealt with a terribly debilitating condition since the age of nineteen. Laura is a remarkable woman who most recently published the story of a literary agent, Jerry Halpern, titled A Literary Ending. Jerry unfortunately passed away in 2026 from Fatal Familial Insomnia (FFI), a disease which still remains incurable. His younger daughter, Jen, who carries the genetic disease, is an activist and author of her own autobiography titled Lab Rat. She continues to volunteer for trials and treatments that might stop the heritable cycles of FFI before she reaches the age when symptoms inevitably destroy the thalamus, the control center of her brain.

Jen’s mother, Cheryl, who had confessed many times over the years that she was never a reader or a writer, became an avid world traveler. After her husband’s death, she visited dozens of countries while keeping in daily contact with her daughters.

In a retrospective interview written by J.F. Pirro for Philadelphia Magazine, Cheryl addressed her relationship with her late husband beautifully: I never realized how important Jerry was to me when he was alive. As a child of abuse, I took advantage of my husband’s love, the lifestyle, and the security he granted me, without ever really understanding the depth of his commitment. It took his death for me to learn the truth—that without my husband, I might never have been able to break the cycle of mistrust that remained with me my entire life.

In one of his clearer moments near the end, Jerry told me that he never felt entirely worthy of me. He didn’t blame me for my many faults or the emotional chilliness I maintained throughout our marriage; he just wanted to prove his love to me. Except for my children, I never thought of a legacy as part of a life. I see now that Jerry is more alive in me today than he ever was when he was physically with us. After his death, he became a north star for our family’s philanthropic giving. His authors’ books finally became bestsellers, and his daughters have both become his agents in helping others live better lives. Sharon has dedicated herself to finding cures for the disease that claimed her father, and Jen lives life on the edge every single day, realizing that life is to be lived, not stored away, and that giving back is the greatest reward of all.”

The Final Alteration: 2036 and Beyond

In 2034, geneticists officially eradicated FFI from the future lineage of affected families, publishing their landmark success in The New England Journal of Medicine and the Journal of the American Medical Association. The brilliant team that developed the cure included Dr. Sharon Halpern and her sister, Jennifer, who had courageously volunteered for every clinical test and trial launched since their father’s death.

The faulty gene was located, and the revolutionary procedure was tested in late 2034 through the injection of an AAV Capsid carrying a synthetic genetic tape. It floated through Jen’s bloodstream, unlocked the blood-brain barrier, and sought out the precise neurons in her thalamus where the mutation resided. Once inside, the capsid placed a permanent molecular tape over the gene’s “on” switch, completely silencing the mutation for the rest of her life. After replicating the procedure with others affected by FFI, researchers confirmed that those receiving the treatment were entirely saved from an earl

How long a person really stays alive is a question for the ages, and a conundrum for philosophers, poets, and physicists alike. Some leave the Earth early, as did Anne Frank, who was killed at age 15, but whose diary, written while hiding from the Nazis in World War II and published by her father, Otto, has outlasted her physical self by more than 80 years—thus far.

Wolfgang Amadeus Mozart composed more than 600 works, including some of the most famous symphonies and operas ever written, before succumbing to a mysterious illness at the age of 35.

The poet Sylvia Plath struggled with clinical depression and took her own life in 1963, while her only novel, The Bell Jar, and a collection of poems published after her suicide at the age of 30, served to break the mask off the 1950s plight of the domestic woman and paved the way for the modern feminist movement.

It was these voices, along with Jerry Halpern’s story, written by Laura Hillenbrand, that inspired Jerry’s daughter Jennifer to jump-start her own career in writing after finishing high school and heading off to Bryn Mawr College to study literature and creative writing.

Carrying her father’s gene that caused his death, she was well aware that she might perish early, but she was also blessed with other skills of his, newly exhibited during her junior and senior years of high school.

As well as being one of the cast of characters in Hillenbrand’s biography, Jennifer’s story, as composed by reporter J. F. Pirro and published in the April 2028 issue of Philadelphia Magazine, expanded her notoriety as a “survivor,” even though she might be destined for a shorter life than most due to Fatal Familial Insomnia, or FFI.

The cover of the magazine depicted Jen holding a stick while standing on the Agnes Irwin School playing field, smiling broadly and wearing her symbolic “Unbroken” sweatshirt.

Included in the Philly-centric story was a brief subplot about her mother, a former Llanerch Diner waitress; her sister Sharon, a junior and pre-med student at William & Mary; and her father, Jerry Halpern, the subject of the much-anticipated book, A Literary Ending, written by the celebrated author Laura Hillenbrand.

Jen, prior to matriculating into Bryn Mawr College, had already found a publisher for her own short work that focused on the lives of famous people who died early, but who had made lasting impacts on the world during their short stay on the planet.

According to Jen, then 18, as stated in Pirro’s six-page editorial titled “Survivor, ”there was no guarantee of a long life for any of us, and no time to waste in becoming all one can be during the time omne has left left.

Her message was not only inspired by her father’s story as revealed in depth by Hillenbrand, but also by her awareness at the age of 14 of her genetic inheritance of a disease that could most probably, over a period of 18 months, eat away at the control center of her brain.

Her mother had contributed greatly to Pirro’s story by revealing personal kindnesses granted by her late husband that were not mentioned in Hillenbrand’s book, including an exchange between Jerry and a male customer at the diner where she had worked as a waitress.

As stated in Pirro’s story, a well-dressed man frequently came to breakfast but always had a complaint about something he was served. One day his eggs were runny, and the next day his coffee was cold, and because of that, his tips were always small. Jerry would often see the amount of change left by the man after he walked out the door and, when he noticed it, he’d compassionately add a bill or two to the coins.

One day, the man came back in to get the paper he’d left on the table and noticed the bills Jerry had left. He glanced to see if anyone was watching, picked up the bills, and put them in his pocket. Jerry, who had not yet finished eating, left his table, approached the man, and said in a forceful voice, “Put that money back!”

The man was surprised that he was caught, but acted as if he’d done nothing wrong. Jerry confronted him again with the facts. “These girls who work here make barely enough to pay their rent, and I’ve seen you short-change them many times. But this time you went too far. After dining here, I’ve frequently added to your tips, such as they are, and have noted that you excuse your pecuniary gratuities by pointing out the flaws of nearly every  meal brought to you by your server. My question is, if you don’t like the food and the service, why do you keep coming? 

“But today you went too far. You stole the money I left for your waitress on your table, and although no one else saw you pick up the bills, I did. So please return them to the table now.”

In Pirro’s story, Jerry, who was taller, younger, and more fit than the man he faced, stood his ground against the grudging bully until the man reached into his pocket, returned the crumpled bills to the table, and left the premises. The patrons and staff remained silent and business continued as usual, but several people who left the diner before Jerry had smiled at him and nodded, with a few even quietly whispering a “thank you.”

“I wasn’t on duty that day,” said Cheryl to Pirro. “And Jerry never mentioned the episode to me. But I noticed that when Jerry’s orders were handed to me by the cooks, his meal often had an extra egg, his juice was poured into a larger glass, and his coffee was always piping hot. He never told me what he’d done, but others have.”

Because of her friendship with Sabina Wister, Cheryl, who had no need for a job and whose children were both in college, joined the committee of Class Representatives who reach out to other parents to solicit donations for the school’s endowment and annual fund. Cheryl’s major focus became the school’s Financial Aid and Diversity Initiative and the Bridge Scholarship, to which she provided a significant contribution.

The scholarship was reserved for girls with backgrounds similar to hers, to ensure that even girls from a diner background could have a similar chance in the world as a Wister. She also took on a leadership role in organizing large-scale fundraisers such as the winter coat and prom dress drives.

As the years went by, with her close ties to Sabina, Cheryl became a chair for several fundraisers, and eventually the Halpern name was mentioned alongside those of the Chews, Hamiltons, and Wisters.

Several years after Jerry’s passing, Sabina said to Cheryl at lunch, “You know, Cheryl, it’s ironic that you, a waitress, have gained such respect and authority at the school. Many parents here have no idea of your past unless they’ve read Hillenbrand’s book. But all of them speak your name with reverence. I’ve never asked you this, but was your husband brought up in a Jewish household?”

“Yes, but no,” answered Cheryl. “I don’t even know that Laura knows that Jerry’s father was Jewish. Since his mother was Protestant, he grew up in the Episcopal church, until he lost faith in all religions after attending Villanova. Is there a reason that you ask?”

“No, but I’m a bit curious, since I’ve learned that Halpern is historically a Jewish name.”

“Frankly, I never thought about that,” said Cheryl.

“Apparently, neither have most of the waspish parents at the school. I was recently asked the question by one of the Jewish mothers, since she knows of several Halperns in the area.”

“Interesting,” answered Cheryl.

“And yet, another landmark for diversity for good old Agnes Irwin. Bravo!” said Sabina.

Sharon graduated from William & Mary in 2031, was accepted into the Biotechnology Program at Johns Hopkins, and chose the Molecular Target and Drug Discovery track, focusing on biochemical pathways of diseases. Since FFI is caused by a misfolded protein (prion), Sharon’s coursework centered on how to identify these broken proteins and methods of designing molecules to stabilize or destroy them before they could reach the brain.

Instead of a standard professional Master’s, Sharon chose the Thesis option, which involved two semesters of hypothesis-based research. Hopkins, being home to some of the world’s leading experts in prion research, required Sharon to spend many nights in the lab, working with transgenic mouse models or “mini-brains” that had the prion protein mutation.

Her mission was not to get a perfect grade; she instead was searching for a therapeutic window—a way to stop the domino effect of misfolding in her sister’s brain before the disease could begin to develop in fifteen years or so.

She was schooled by some of the leading specialists in general research, who turned to Sharon for her personal experiences with an FFI-afflicted family, and she was asked by Dr. Edmond Cleric, the Director of Neurodegenerative Diseases, if her sister could assist in the discovery process.

Sharon was direct with her answer. “Jen has her own life and goals. She’s comfortable knowing that she might get the disease in the future, so I’d rather not see her focus redirected by becoming a lab rat for experimentation.”

Dr. Cleric emphasized the importance of Jen as a presymptomatic carrier and stated that she would be a valuable partner in the race for a cure. He also assured Sharon that the tests would take less than a day, be conducted yearly, and be scheduled so as to create as little interference in her daily life as possible.

Dr. Cleric added that her sister would serve as a co-investigator on the project. But the most impactful way she might serve was by allowing researchers to take a small skin biopsy to use in pre-programming her cells into stem cells that would then grow into live neurons. The rest would be done without Jen being present, since the researchers would have what they n

Prior to Jerry’s passing, Sharon and Jen were both genetically tested for FFI. Sharon was proven to be free of the mutation causing the disease, while Jen’s test, unfortunately, revealed her to have a predisposition for the condition. Surprisingly, after Jen learned of her likelihood of contracting FFI, it didn’t have much of an effect on her. The doctors stressed that she would most likely not show signs of the disease for 25 years, whereas scientists had already begun research and testing on animals for genetic adjustments to end FFI, along with other prion diseases.

Sharon, however, was hit hard by her sister’s diagnosis, and matured quickly past the selfish teen she’d become to take on the role of researcher and advocate. In doing so, she and her mother bonded, since Cheryl was hit harder by Jerry’s death than she would ever have expected.

Laura Hillenbrand unexpectedly traveled to Pennsylvania from Oregon to attend Jerry’s funeral, and to personally meet the cast of characters she’d accumulated for inclusion in her book. She was accompanied by Dolores Southworth, her personal assistant, who had arranged all of the reservations, including the airline tickets, hotel accommodations, and a rental car to chauffeur Laura throughout her short visit.

Laura had previously contacted many of the people on the list she’d copied from Jerry’s phone to construct a cohesive vision of her book’s protagonist. Dave and Cheryl provided additional names of those who had known Jerry over the years and had been beneficiaries of his kindnesses.

The results of Laura’s interviews confirmed her own assessment of Jerry during the brief time she’d spent with him at her home. One author who had been mentored by Jerry into publishing characterized him as “priestlike” in his manner.

“What I remember most about Jerry,” the author recalled, “was when I was struggling with a difficult segment about the fidelity of my character’s marriage. Jerry reflected on the paragraphs and suggested I consider the ‘stubbornness of love’ as a starting point. He told me that in his own relationship with his wife, he’d often thought of straying. He explained to me that it often required every ounce of strength he had not to bolt and bust everything apart. He said that in those moments, he had to leave the room, take a long walk, or find a quiet place to reevaluate his marriage, remind himself of the reasons he married Cheryl, consider the effects of a split on his daughters, and dig deep to remember just how much Cheryl meant to him.”

When contacting a member of Jerry’s staff, Laura thought back to a time when the staff member had decided that the demands of her job were too great for her, and that she was considering a teaching position at a high school. It offered her the freedom and time to hone her writing skills and pursue her dream.

Jerry had not scolded her, but had reminded her of what she’d be giving up. “As an agent for fledgling writers, you are much more than a teacher, and your job is far more complex than just critiquing the words your authors write. You are their Sherpa walking beside them, guiding them along their chosen paths, and their safety net from the pitfalls that are invisible to them. You are the one who encourages each of them to reach deep within their souls to reveal their finest selves. You’re with them on their journey, one to which they’ve committed in words, pen, or keyboard, with hopes you might only wish for, if and when you’re truly ready to pursue your own dream.”

Another staff member recounted Jerry’s personal confession: “I thought I wanted to write fiction, and then discovered I didn’t have the talent or staying power. As an agent, I see my job as a disciple of my authors, as well as the manager of their careers. Thinking about your job in that context may enable you to improve your own writing skills as you support and encourage others to push forward.”

From editors to publishers, and vendors to film producers, and then by nearly every writer Jerry had worked with over the past 25 years, he was praised for the devotion, dedication, decency, conviction, and integrity he had brought to each job and relationship.

“He never told me, even once, that what I was writing was crap,” said another author. “He just helped me navigate around what he called potholes that needed to be filled with words forceful or eloquent enough to smooth out a sentence. I’ve followed his advice and have applied it to every book I’ve written since his tutelage, often recalling his words as I edit out an unnecessary word or phrase that might weaken the structure of a sentence, paragraph, or chapter.”

During Laura’s visit to Philadelphia, she found time to meet Cheryl and her daughters, and informed them of the interviews she had recorded and the new direction she was considering for the book.

Laura wrote in her notebook, “When I was first contacted by Jerry or Dave (I’m not sure who I talked to first), it appeared that the book’s focus would be on Jerry’s disease and his battle to draw attention to it in order to save his daughters. Since then, I’ve considered multiple subplots, including AI’s threat to the publishing business, the shift of readers from physical books to MEMS, the increase of self-published books in the marketplace, and the shortened attention span of the reading populace in general.”

Addressing Cheryl specifically, she said, “In my brief time conversing with Jerry in Oregon, he spoke mostly about you.”

“Anything specific?” answered Cheryl with apprehension.

“Jerry revealed to me that he’d done some research on your parents, and your father’s abuse of you before you and he met. He told me that your father had remarried shortly after you left home, and that you’ve never seen or spoken with him since. He died several years ago, but before he passed away, Jerry met with him at his home in Lansdale, Pennsylvania. Jerry said that your father’s new wife, Gabrielle, was with him during the visit, and right in front of her he admitted to abusing you after your mother died. Apparently, he repented after joining a Christian religious sect where he met Gabrielle and soon afterwards found God.”

“You’ve got to be kidding!” exclaimed Cheryl with a laugh. “Did Jerry believe him?”

“He didn’t say much else about it. But Jerry told me that he let your father know that he had two granddaughters, a fact about which the man had seemed indifferent. Jerry said that he looked mean, and that Jerry decided then to never contact him again. He also told me that he felt guilty about visiting him behind your back, but that the visit made him understand you a little better.”

“That must have been at least 10 years ago,” said Cheryl. “I’d heard from his sister, my aunt, that he’d passed away, but I didn’t go to the funeral and I haven’t desired to keep up with my aunt either.”

Laura continued, “I learned a great deal about Jerry from a lot of people over the past few months. Your husband’s story is fascinating. Hopefully, you and I can chat, and you can provide me your own story about Jerry sometime soon.”

“I’d like that, Laura. Anytime. One thing I know is that Jerry was a better husband to me than I was a wife to him.”

“Would you mind if I interview your girls for the book?” asked Laura.

“Not at all. With Jen having the same gene confirmed in her that caused Jerry’s death, we’re hoping that your book can lead to a cure so that she doesn’t have to worry about it as she continues to grow, and if and when she chooses to have children.”

“I’m still hoping for a cure for my own illness, Chronic Fatigue Syndrome,” answered Laura. “It’s a bitch of a disease to live with.”

Dave met with Tabana, and in interviewing her spoke about the difficulties of representing authors in the modern age. They were seated at a table by a window looking over the Delaware and talked on unrelated subjects as well, including Tabana’s desire to continue her role as a mother to her children. Dave spoke of his business and how he knew that Jerry’s clients were nervous about a new person stepping in to manage their projects.

Tabana liked the idea of working one-on-one with her clients, and noted that, if taken on in a role as a freelance editor, she would really like to read the books her authors wrote rather than just gather impressions. “Before this meeting, I read Phil Capone’s novel, The Better Man. It’s a literary work and not a thriller or a romance novel; it requires the reader to draw from introspection to be appreciated.”

Dave was impressed that Tabana referenced an author and a book brought to Knopf Doubleday by Jerry, commenting on the selection, “Phil’s books aren’t the easiest reads, but he’s received his share of accolades, including The Better Man being shortlisted for the Booker Prize. I can see where it isn’t for everyone. It reminds me a little of Cormac McCarthy, but not quite as cynical.”

By the end of the meeting, Dave decided to bring Tabana in as a temporary replacement, and accepted the limitation she imposed on the hiring: that she work in the office only three days a week. Under other circumstances, Dave would have balked at her request, but he needed someone quickly to fill Jerry’s position, and since Tina had vouched for Tabana’s professionalism, he decided to bring her in as a freelancer, realizing that she could do as much work from home as she could in the office.

Dave’s priorities changed after he heard of the $2 million insurance payout and tabulated his personal take from Laura’s advance. Because Tina would be managing most of those details for him, he decided to investigate a buyout from a larger firm. He was almost 64 years old and Jerry had been his retirement backup plan. He currently had no one in his firm capable of taking over the agency. Wi

Prior to Jerry’s passing, Sharon and Jen were both genetically tested for FFI. Sharon was proven to be free of the mutation causing the disease, while Jen’s test, unfortunately, revealed her to have a predisposition for the condition. Surprisingly, after Jen learned of her likelihood of contracting FFI, it didn’t have much of an effect on her. The doctors stressed that she would most likely not show signs of the disease for 25 years, whereas scientists had already begun research and testing on animals for genetic adjustments to end FFI, along with other prion diseases.

Sharon, however, was hit hard by her sister’s diagnosis, and matured quickly past the selfish teen she’d become to take on the role of researcher and advocate. In doing so, she and her mother bonded, since Cheryl was hit harder by Jerry’s death than she would ever have expected.

Laura Hillenbrand unexpectedly traveled to Pennsylvania from Oregon to attend Jerry’s funeral, and to personally meet the cast of characters she’d accumulated for inclusion in her book. She was accompanied by Dolores Southworth, her personal assistant, who had arranged all of the reservations, including the airline tickets, hotel accommodations, and a rental car to chauffeur Laura throughout her short visit.

Laura had previously contacted many of the people on the list she’d copied from Jerry’s phone to construct a cohesive vision of her book’s protagonist. Dave and Cheryl provided additional names of those who had known Jerry over the years and had been beneficiaries of his kindnesses.

The results of Laura’s interviews confirmed her own assessment of Jerry during the brief time she’d spent with him at her home. One author who had been mentored by Jerry into publishing characterized him as “priestlike” in his manner.

“What I remember most about Jerry,” the author recalled, “was when I was struggling with a difficult segment about the fidelity of my character’s marriage. Jerry reflected on the paragraphs and suggested I consider the ‘stubbornness of love’ as a starting point. He told me that in his own relationship with his wife, he’d often thought of straying. He explained to me that it often required every ounce of strength he had not to bolt and bust everything apart. He said that in those moments, he had to leave the room, take a long walk, or find a quiet place to reevaluate his marriage, remind himself of the reasons he married Cheryl, consider the effects of a split on his daughters, and dig deep to remember just how much Cheryl meant to him.”

When contacting a member of Jerry’s staff, Laura thought back to a time when the staff member had decided that the demands of her job were too great for her, and that she was considering a teaching position at a high school. It offered her the freedom and time to hone her writing skills and pursue her dream.

Jerry had not scolded her, but had reminded her of what she’d be giving up. “As an agent for fledgling writers, you are much more than a teacher, and your job is far more complex than just critiquing the words your authors write. You are their Sherpa walking beside them, guiding them along their chosen paths, and their safety net from the pitfalls that are invisible to them. You are the one who encourages each of them to reach deep within their souls to reveal their finest selves. You’re with them on their journey, one to which they’ve committed in words, pen, or keyboard, with hopes you might only wish for, if and when you’re truly ready to pursue your own dream.”

Another staff member recounted Jerry’s personal confession: “I thought I wanted to write fiction, and then discovered I didn’t have the talent or staying power. As an agent, I see my job as a disciple of my authors, as well as the manager of their careers. Thinking about your job in that context may enable you to improve your own writing skills as you support and encourage others to push forward.”

From editors to publishers, and vendors to film producers, and then by nearly every writer Jerry had worked with over the past 25 years, he was praised for the devotion, dedication, decency, conviction, and integrity he had brought to each job and relationship.

“He never told me, even once, that what I was writing was crap,” said another author. “He just helped me navigate around what he called potholes that needed to be filled with words forceful or eloquent enough to smooth out a sentence. I’ve followed his advice and have applied it to every book I’ve written since his tutelage, often recalling his words as I edit out an unnecessary word or phrase that might weaken the structure of a sentence, paragraph, or chapter.”

During Laura’s visit to Philadelphia, she found time to meet Cheryl and her daughters, and informed them of the interviews she had recorded and the new direction she was considering for the book.

Laura wrote in her notebook, “When I was first contacted by Jerry or Dave (I’m not sure who I talked to first), it appeared that the book’s focus would be on Jerry’s disease and his battle to draw attention to it in order to save his daughters. Since then, I’ve considered multiple subplots, including AI’s threat to the publishing business, the shift of readers from physical books to MEMS, the increase of self-published books in the marketplace, and the shortened attention span of the reading populace in general.”

Addressing Cheryl specifically, she said, “In my brief time conversing with Jerry in Oregon, he spoke mostly about you.”

“Anything specific?” answered Cheryl with apprehension.

“Jerry revealed to me that he’d done some research on your parents, and your father’s abuse of you before you and he met. He told me that your father had remarried shortly after you left home, and that you’ve never seen or spoken with him since. He died several years ago, but before he passed away, Jerry met with him at his home in Lansdale, Pennsylvania. Jerry said that your father’s new wife, Gabrielle, was with him during the visit, and right in front of her he admitted to abusing you after your mother died. Apparently, he repented after joining a Christian religious sect where he met Gabrielle and soon afterwards found God.”

“You’ve got to be kidding!” exclaimed Cheryl with a laugh. “Did Jerry believe him?”

“He didn’t say much else about it. But Jerry told me that he let your father know that he had two granddaughters, a fact about which the man had seemed indifferent. Jerry said that he looked mean, and that Jerry decided then to never contact him again. He also told me that he felt guilty about visiting him behind your back, but that the visit made him understand you a little better.”

“That must have been at least 10 years ago,” said Cheryl. “I’d heard from his sister, my aunt, that he’d passed away, but I didn’t go to the funeral and I haven’t desired to keep up with my aunt either.”

Laura continued, “I learned a great deal about Jerry from a lot of people over the past few months. Your husband’s story is fascinating. Hopefully, you and I can chat, and you can provide me your own story about Jerry sometime soon.”

“I’d like that, Laura. Anytime. One thing I know is that Jerry was a better husband to me than I was a wife to him.”

“Would you mind if I interview your girls for the book?” asked Laura.

“Not at all. With Jen having the same gene confirmed in her that caused Jerry’s death, we’re hoping that your book can lead to a cure so that she doesn’t have to worry about it as she continues to grow, and if and when she chooses to have children.”

“I’m still hoping for a cure for my own illness, Chronic Fatigue Syndrome,” answered Laura. “It’s a bitch of a disease to live with.”

Dave met with Tabana, and in interviewing her spoke about the difficulties of representing authors in the modern age. They were seated at a table by a window looking over the Delaware and talked on unrelated subjects as well, including Tabana’s desire to continue her role as a mother to her children. Dave spoke of his business and how he knew that Jerry’s clients were nervous about a new person stepping in to manage their projects.

Tabana liked the idea of working one-on-one with her clients, and noted that, if taken on in a role as a freelance editor, she would really like to read the books her authors wrote rather than just gather impressions. “Before this meeting, I read Phil Capone’s novel, The Better Man. It’s a literary work and not a thriller or a romance novel; it requires the reader to draw from introspection to be appreciated.”

Dave was impressed that Tabana referenced an author and a book brought to Knopf Doubleday by Jerry, commenting on the selection, “Phil’s books aren’t the easiest reads, but he’s received his share of accolades, including The Better Man being shortlisted for the Booker Prize. I can see where it isn’t for everyone. It reminds me a little of Cormac McCarthy, but not quite as cynical.”

By the end of the meeting, Dave decided to bring Tabana in as a temporary replacement, and accepted the limitation she imposed on the hiring: that she work in the office only three days a week. Under other circumstances, Dave would have balked at her request, but he needed someone quickly to fill Jerry’s position, and since Tina had vouched for Tabana’s professionalism, he decided to bring her in as a freelancer, realizing that she could do as much work from home as she could in the office.

Dave’s priorities changed after he heard of the $2 million insurance payout and tabulated his personal take from Laura’s advance. Because Tina would be managing most of those details for him, he decided to investigate a buyout from a larger firm. He was almost 64 years old and Jerry had been his retirement backup plan. He currently had no one in his firm capable of taking over the agency. Wi

Gerald M. Halpern,
 49,
 Philadelphia  Literary Agent and “Author’s Advocate”

 Jerry Halpern, a cornerstone of the Philadelphia publishing community and partner at the Brunhaufer Agency on Rittenhouse Square, died August 1 at his home in Villanova following a courageous battle with Fatal Familial Insomnia (FFI). He was 49.

Born in 1978 and raised in Havertown, Mr. Halpern was a proud product of Delaware County. He parlayed a lifelong passion for the written word into a distinguished career, earning his Master’s degree in Creative Writing from Villanova University in 2001. Known for his “red-pen integrity,” Mr. Halpern was revered by editors and novelists alike for his ability to bridge the gap between raw manuscript and literary art.

Under his leadership, the Brunhaufer Agency grew into a premier boutique firm, representing a diverse portfolio of voices that stretched far beyond the city limits. “Jerry didn’t just sell books; he championed legacies,” said his partner, David Brunhaufer.

In his final year, Mr. Halpern turned his own tragedy into a mission for scientific discovery. He collaborated with acclaimed author Laura Hillenbrand on a forthcoming biography, A
 Literary
 Ending, intended to shine a light on a rare prion disease that claimed his life. The project also marked a return to long-form reporting for Ms. Hillenbrand, a fellow traveler in the world of chronic illness.

Beyond the office, Mr. Halpern was a devoted family man. He is survived by his wife, Cheryl (née Davis), and his daughters, Sharon and Jennifer. While the family has faced the genetic complexities of FFI with startling bravery, they remain steadfast in their support of the research that Jerry’s story has ignited.

A private graveside service will be held at the Halpern family mausoleum at Westminster Cemetery in Bala Cynwyd.

In keeping with Jerry’s commitment to solving the “invisible” diseases of the brain and body, the family requests that tributes be made to the Open Medicine Foundation (OMF). Contributions made in his name will support ongoing research into Myalgic Encephalomyelitis/Chronic Fatigue Syndrome and Fatal Familial Insomnia.

Donations may be directed to: www.omf.ngo

------------------------------------------------

After Dave discovered that Jerry had an incurable disease, he knew that he had to scramble to find a replacement—either a partner or an agent—who was as capable and multifaceted as Jerry. He had always known that Jerry not only provided assistance to his writers, but also mentored other agents on his small staff and educated them as to what authors and publishing houses expected of them.

Since shortly after Jerry joined his firm, Dave knew that his new partner was the prime mover of the organization and carried the heaviest load. During the year 2023, the agency received 500 queries a month. By 2026, the number had grown into the thousands. The increase was partly due to AI’s ability to research, edit, and provide alternatives that enabled existing and novice writers to complete a book in only a few months, rather than a few years.

Most publishing houses were no longer interested in new writers. They needed top-selling books with star power behind the author’s name, which usually dominated the cover and reduced the artwork and the title of the book.

Since Jerry became a partner ten years earlier, the agency had grown significantly, and Jerry’s portfolio of writers contained new names, such as Caldwell Taylor, Jennifer Watts Sinota, and Jefferson Stood. By the time Jerry was diagnosed with FFI, Taylor was in the process of writing his third book—a literary thriller that Jerry believed would be his best and most salable novel yet. But Taylor depended specifically on Jerry for legal advice, edits, and content revisions.

Jennifer Sinota had once again signed up with the agency to help her publish her second novel, which was based on the challenges of a 58-year-old woman who becomes homeless, yet in less than three years becomes a senior partner in a Wall Street investment firm.

The only welcome news generated by Jerry’s quick departure was the increased value of the life insurance policy they’d originally taken out when Jerry became a partner. Instead of a $1 million death benefit, the agreed amount was $2 million, with a suicide clause existing only for the first two years of the agreement.

After reading the agreement two more times, Dave relayed the message to Cheryl, knowing that her half of the additional $1 million she’d be entitled to would not only pay for her daughters’ Agnes Irwin tuition, but also the cost of any college and advanced degrees they might desire in the years ahead.

Dave spoken with his attorneys and they suggested that he might consider dissolving the business after receiving his share of the benefits from the policy, or partner with a larger firm like Jerry did and bring to it his own cache of authors.

But just as Dave was ready to start the process of terminating his business, he received a call from Laura’s agent, Tina Bennett.

“I just wanted to make you aware that Laura has decided to take on Jerry’s project, and that she has personally requested that I work with you and your agency to bring your partner’s story to Penguin. I’ve discussed this with the publisher, Nihar Malaviya, and he’s excited about the project as well as the fact that Laura will be writing again. He is well aware that Jerry is your partner in the firm and they respect the fact that you approached me with the concept. As a powerhouse in the industry, Penguin Random House is in a position to broker any and all translation and film rights, which they believe will enable the book to seamlessly transition to film, as they did in the case of Laura’s previous books.”

Dave interrupted Tina and put a question to her. “You do know that our firm is able to broker film deals on our own?”

“I’m sure you are, Dave, but although your agency is well-respected, my credentials with Random House are essential to the commercial success of this particular book.”

Tina then also reminded Dave that Laura was still ill, and it might take some time for her to complete the book.

“Penguin Random House will provide a significant advance that will assist us both financially. And although I am facilitating the publishing, you and your agency are integral to Jerry and Cheryl’s story.”

Dave responded without an edge, “I’m sorry, Tina. I sounded like a prick, but things are not great here at the agency right now. Jerry’s unable to service his clients and I have to find a new agent. Do you, perhaps, know of any young, talented agents I might hire or partner with to replace Jerry?”

Without a pause, Tina responded, “Yes! I may just have the perfect person for you. It’s a she, if that matters at all to you, and she’s a mix of Asian and African descent.”

“I don’t care if the person’s a Martian. How do you know her?”

“Her name is Tabana Nigoci. I worked alongside her at my previous job, and she’s really rather amazing. She’s 38 and has a home near New Hope, not that far from you. She stopped working after she had a child, and now wants to jump-start her career again while maintaining as much ‘home’ time as possible in order to raise her son. She’s been approached by a few New York agencies recently, but she’d be working full days and most likely replacing agents, and she’s not up for that. The trade is getting tougher for all of us.”

“It is, but tell me about her.”

Better than that, I’ll provide you a link to her website.”

Tina emailed Tabana’s website access, email address, and phone number to Dave, and then Dave called Cheryl to tell her the news and catch up on news about Jerry.

“It’s rather amazing to see him when he wakes up from his stupor,” said Cheryl. “It seems that he still has moments of great clarity of thought, which are erased almost immediately after by the disease. He’s losing weight since he doesn’t eat much, and he is always very tired and looks something like those Margaret Keane ‘big-eyed kids,’ which were sad but endearing.”

“Does he ever ask about the agency?” asked Dave.

“In those moments, he worries about his clients but knows that he can’t help in any way. He also worries about you and the business, but his mind floats away in the middle of a thought as he stares into space. It’s like the power that shuts down during a thunderstorm. The lights flicker and then come to life, and then the world goes dark.”

“How are you handling it?”

“Better than I’d expected,” answered Cheryl. “I had this interesting conversation with Sharon, and she told me she knew that she and Jen both might have the same disease, but Sharon’s investigated it and isn’t particularly troubled by the prospects of contracting it. She’s nicer to me now and seems more grown up. And all of a sudden, I’m able to take on the care of my husband without hating him for it. Frankly, it’s miraculous.”

“Do you think it has anything to do with finances?” asked Dave.

“I thought it might, but no. I think it has more to do with my daughters and how they’re taking it. They’re so sweet to their father, both when he’s lucid and when he’s just staring. They help me more with things I need and aren’t looking at me like I’m their enemy. I’d love to tell Jerry about it, but in our time together when his thoughts are clear, he wants to discuss his dinners at the diner and the people we met there. He remembers them more vividly than I do, and I think I love him more than I ever have. It’s very strange.”

Dave passed on the news to Cheryl about Tabana, the agent referred to him by Tina, with whom he hadn’t yet spoken about Jerry’s position. He then segued back to Jerry and how insightful he was in business and how he cared for his clients.

“He was always too good for me,” said Cheryl. “We never should have married. I played him and I struggled to maintain the personality I adopted in exchange for stability, security, and children. Now I’ve got what I wanted, and am soon going to lose the best thing that ever happened to me.”

Dave had no words of wisdom for Cheryl, since he was in much the same position. He had underestimated Jerry’s value, and now he might gain from it or not, but he realized that his partner was also his most valuable asset.

After ending the call with Cheryl, Dave located the email from Tina that contained Tabana’s number and called it. When Tabana answered, he heard children’s voices in the background as she spoke into the phone. “Hello!”

“Is this Tabana on the line?”

“Yes, sir,” she answered.

“Hi, Tabana! I’m Dave Brunhaufer. I was talking to Tina Bennett and she referred me to you for a possible position in my literary agency. She says you’re the best, so would it be possible for us to meet and talk about it?”

“I’ve heard of your firm, Mr. Brunhaufer. You’re located not too far away in Philly. I’ve passed your building on occasion and wondered about your business, but never looked it up.”

“We’re small but powerful,” chuckled Dave. “And please, call me Dave! I can come to you if it’s more convenient,” he continued. “I love New Hope... the Playhouse... and the winding River Road.”

“I live in Lumberville, right along River Road.”

“Your place overlooks the Delaware River? Can we meet at the Black Bass Hotel?” asked Dave.

“If it’s not out of your way,” responded Tabana.

“How about Thursday?”

“I’ve got the kids on Thursday. So, Friday’s okay?”

“Noon?” replied Dave. “I’ll reserve a table by the water.”

“See you then...Dave!

“Is Dad home?” asked Sharon.

Cheryl responded sarcastically, “Where would he be? He’s not out playing golf.”

Sharon then peeked into the living room and saw her father sitting calmly in his chair, paging through a book. He looked over towards her and smiled.

“What are you reading, Dad?”

“A story that I somewhat remember from a long time back,” said Jerry. “It’s titled To the Lighthouse by Virginia Woolf. Do you know of her?”

“I’ve heard the name, but know nothing about her or her books,” said Sharon, pleased to hear her father speaking as he did before his illness.

“You probably know of Edward Albee’s play, Who’s Afraid of Virginia Woolf? The play was written long after she had died. The book I’m reading   was written in the 1920s and is about the lives of family members over the course of many years. It begins with a vacation at their summer home, and continues a decade later, after the death of the mother and two of their children. The central theme’s about time, and how a single afternoon can feel like a lifetime, while a decade can pass in a heartbeat.

“That’s similar to the way I feel now, Sharon, with my illness. Years in the past are far more vivid in my memory than moments experienced just yesterday.”

“How far have you gotten into the book?” asked Sharon.

“Frankly, I don’t know what page I’m on, but I’m able to remember the ending, which is about how one of the sons and their father formed a bond they never had while the children were growing up.”

“Sounds fascinating,” interjected Cheryl, who had been listening from across the room. “Similar to our family now.”

Sharon dismissed her mother’s comment, and instead put down her book bag and stated, “Speaking of that, Dad, I’ve been doing some research on my own about your illness. In the process, I’ve learned that Jen and I might both at risk of contracting the disease you have when we reach our forties. I’ve also learned a lot about the disease, FFI, which is an acronym for Fatal Familial Insomnia, And, yes, I’ve also learned the word ‘acronym,’ and that as of today the disease is incurable and ultimately fatal.”

Cheryl looked over at Sharon as if she was listening to a girl she’d never met, amazed to find out that her daughter would take the time and make the effort to investigate the disease and be able to remain calm while talking about it.

Sharon looked away from her father to her mother and continued. “For Jen and me, 20 years is a long way off, but it’s still kind of scary to know that you have something inside you that is destined to cripple and kill you. I haven’t yet told Jen about what I’ve learned. But I will. Especially since it’s very possible that one of us might get it.” 

“How... where did you learn about it?” asks Cheryl, mystified by this new version of her daughter.

“You’ve spoken about the disease with us in the room, but never provided details. From what I’ve overheard from you and others, I looked the information up online, and after I got the name, I searched it using AI.”

Sharon reached down to her book bag to find her notepad. “I wrote down what it told me,” she said, “and jotted  down the term it used.

“Here it is: FFI is a neurodegenerative disorder caused by prions, or misguided proteins that destroy the brain. Doctors and scientists haven’t found a cure yet, but scientists are currently working on a possible a cure for FFI and other prion diseases.

“I’ve also learned that people can now be tested to determine whether they are prone to the disease or not, but that parents of a child under the age of 18 must have the approval of a parent or guardian to be tested.”

There was a pause, during which time Sharon looked directly at her mother. Finally Cheryl, broke the silence and asked, “Would you really want to know?” 

“I believe I would, Mom. I know that it will be hanging over me no matter what, but it could also save others, as well as Jen and me... decades from now. Since I revealed to the program that my father has undergone tests that confirmed the location of the gene, I was directed to medical papers that revealed that scientists know exactly where to find the gene and can confirm it in the child of a person with the disease. So, if Jen and I don’t have it, we won’t die of it, and we can’t pass it on to our children. If either one, or both of us, tests positive, doctors can monitor the gene and predict whether the disease will progress rapidly, like Dad’s has done, or more slowly.”

Cheryl interrupted, “But if you test positive for FFI, you then are destined to contract it and die of it, as well as any children you might have.”

“That may or may not be true,” responded Sharon, looking at her notes. “If I test positive, I will become a ‘pre-symptomatic carrier,’ like Dad. To reduce my odds of passing it on to any children, there is currently a way of removing embryos and screening them for the disorder before replanting only those without the FFI gene. This can greatly reducing the risk of any  child, either of us might have, contracting it.”

“But there could still be a chance,” emphasized Cheryl.

“Nothing’s chance-free in life, Mom!” answered Sharon. “I was terrified at first, but I also found out that our greatest hope is the 10 to 20 years between now and an eradication of the disease, another word I learned, due to advances in gene therapy.”

During Sharon’s explanation, Jerry slipped off into a state of opened-eyed oblivion, which was signaled to his wife and daughter by the sound of his book falling from his lap. Sharon and Cheryl were both immediately aware that Jerry would not remember any of the previous conversation, but the two continued to talk.

“Since I now know that I may have the gene,” said Sharon, “I’ve decided that I want to know what the future holds for me and be tested now. But I’m only 16, and Jen’s 14. So both of us must have permission from you to get the test.”

Cheryl answered, “You already know that you have a 50-50 chance of getting the disease, so of course I won’t stand in your way.”

“But how about Jen?” asked Sharon. “I haven’t told her anything.”

“Does she have to know this soon?”

“Come on, Mom. Do you really believe that you could keep this secret from either of us?”

“I’ve withheld other secrets from you,” Cheryl replied.

“Kids are curious,” Sharon answered, “even though we often choose to appear oblivious to our parents. Jen knows more than you think she does about a lot of things you don’t know about. After all, I’m 16, and do you really think she and I don’t talk?”

“Yeah, but that’s just crazy kid stuff,” says Cheryl.

“You may have noticed that Jen has never asked you about her first ‘period,’ replied Sharon. “And who helped her buy her first bra? You never had a sister, so you don’t have a clue of what your innocent 14-year-old daughter knows.”

Sharon put her notebook back in her pack and began to provide her mother with some of the details of her parents’ life that she and her sister  had discovered. 

“When you and Dad would be having sex, we’d sometimes listen at your door. It was one of the only times we heard you giggle. We haven’t heard any sounds coming from your room in a long while, so we figured that something was wrong... my guess was that you were having an affair. I assumed that you were the type to do that, but Dad would never cheat on you.

“Jen thought it was probably due to menopause.”

Cheryl was shocked about what her daughters discussed. She had really thought they were clueless about most of the things their parents thought and did. She recalled that Sharon had cringed from her when she began explaining about sex a few years back. Neither girl was comfortable with the conversation. Cheryl realized that discourses on sex became difficult early in her childhood since she hadn’t had a mother or other female close to her to instruct on the changes to her body. Her father, however, had approached her when she started growing breasts. At first he wanted to see and hear about her changes and watched her undress in front of him. Then he acted differently toward her, appearing sweet and caring. He never was nasty, just touchy-feely, like a doctor when examining a patient. By the time he went over the line and showed himself to her when aroused, and asked her to touch his manhood, she knew something was wrong between them and tried her best to avoid him.

It was only when she graduated from high school and got a job that she cut most ties with him, but it took a lot of courage and began her  doubtfulness of men.

Before working at the diner, Cheryl had learned how to gain control over men, and knew how they responded to women. She used the knowledge to her advantage, and acted out a part that gained her higher tips. She smiled at their suggestive remarks, and cringed at the crude jokes they made that they knew she heard. She’d seen and heard it all before, but knew how to avoid them gaining any access to her inner self.

Jerry was different. He never made sexual advances, but she could tell he wanted to. So, after dating for a few months, Cheryl initiated their first encounter, which was over quickly and for which he apologized. Despite her reticence to sex, she was able to feign enjoyment and cooperate, but was never quite sure that even Jerry wasn’t a man with motives similar to the others who courted her day in and day out.

If Jerry showed any indication of aggressiveness during the act, it immediately stood in the way of her own enjoyment. Her answer was to make sure that she maintained control and could enjoy her own pleasure after he was spent.

Cheryl didn’t know if Sharon was a virgin, and had never

On a day when Jerry was lucid, he called Laura to provide more information on his history. She coached him on what she’d need to make his story resonate, so as not to be a technical thesis, but a readable book for the general public. She asked for his approval to contact individuals on the list she had compiled from his iPhone, including that of his doctor, lawyer, and family members who might have more information on Jerry regarding his aunt’s and grandmother’s illnesses and their possible early cause of death.

“My mind’s fuzzy now, Laura. Please tell me what you need and I’ll get a notarized letter written that will enable you to be my proxy for all of my medical and legal information.”

“Working with what I have so far,” said Laura, “I’ve begun an outline draft that includes your early childhood, education, and literary accomplishments prior to the diagnosis of your illness. I’m currently drafting the segment that I’m familiar with of your disease’s progression through FFI, and then will follow your attempts, until your death, to save your daughters and descendants from the disease that is destined to kill you.”

“A happy story, isn’t it?” said Jerry cynically.

“It’s the story we need to tell, with a conclusion for you that’s inevitable.”

“I get it, Laura. How far into the future do you intend to follow the story?”

“I’m not quite sure, since I have my own personal limitations. The truth is that the conclusion may extend beyond my ability to follow it, and that the story will need to be completed by a younger and healthier writer. Hopefully, the code to your disease will be cracked in plenty of time to save your girls, perhaps even before the book goes to press.”

“Yes, that would be the best outcome.”

“Not necessarily. A better outcome would be that science gets ahead of the disease due to the press coverage about the book’s completion. Speed is of the essence, in order to assure your daughters that they can rest easy without thoughts of their possible fate overwhelming them and limiting their lives in young adulthood.”

Laura reflected on her own health issues that had forced her to quit college, a period in her life that still haunted her. “I truly hope that the disease can be conquered before your girls become defined by it. I fought my battle through the writing of Seabiscuit and Unbroken; many times it seemed impossible to just get out of bed. Until this day, it still does.”

“I trust that you’ll make it through the book, Laura. Dave and Tina will work with you as a team to provide the publicity needed. Online chats weren’t as ubiquitous back when you wrote your books. And with AI as a researcher, you’ll not have to wait for newspaper clippings to be mailed to you from archives.”

“I’m not so sure I like all of the new ways of doing things,” said Laura.

“Even though you weren’t in top-notch shape when you visited, it was to my advantage to have met with you in person, and get to know you outside of a computer screen or a phone call.”

“The world’s not going to slow down to accommodate us,” answered Jerry. “I used to enjoy doing my editing with pencils and red felt-tipped markers. I’ve missed those days when I could personally explain in a short note to a writer the salient points of a manuscript, as well as the room for improvement he or she could incorporate into a final draft. In recent years, all I get to see is an AI-written synopsis and 20 pages of a draft in .pdf format. Our desks are piled high with these printed segments, along with complete drafts by writers who we know to be reliably marketable. It never ends,” added Jerry, who for the moment seemed perfectly capable of continuing with his work.

Laura then used this moment of clarity to find out more about Jerry’s childhood, teen and college years, previous jobs he’d held, and his introduction to his wife at the Llanerch Diner.

“I’m captivated by stories with great characters,” offered Jerry. “You are too, from what I gather from your books. Cheryl was one of those characters, right out of a Mickey Spillane novel: red and white paper cap, wide stiff-collared blouse, a crisp white apron over pleated black slacks, and red shoes with high heels—always high heels. I was just one of the guys at the diner who adored her Philly accent and the napkin that peeked out of her vest pocket. Most of the guys were married, but I wasn’t. And how I missed her on the days I couldn’t be there for breakfast, or on the rare occasions when she took the morning off.”

“Sounds like you were smitten immediately,” said Laura with a slight giggle in her voice.

“I was,” answered Jerry. “But it took some time to reel her in. Despite her allure, she was damaged from her early years of abuse and strife.”

Jerry continued telling Laura his wife’s story until he zoned out and Laura had to stop the interview.

“Get some rest, Jerry. This was good. Whenever you want to talk, I’ll make time for you.”

Jerry put down his phone and immediately forgot the conversation and the name of the person on the other end of the line. He then got up, walked into the kitchen, saw Cheryl standing by the sink, and burst into tears.

She walked to him, took his hand, and guided him back to his reading chair in the living room. “Would you like me to get you something, dear? A glass of water or a cup of tea?”

He did not recognize her as he stared into her face. She put on the smile of the Cheryl during her diner years, patted her husband on the head, and walked back to the kitchen. Out of sight of Jerry, she grasped the counter with one hand while putting a kettle of water on the stove.

How long will this go on? she thought as she leaned into the counter, put her head down, and screamed as silently as possible. She knew he would not hear her, since Jerry only stayed aware for a few hours, at the most, before disappearing behind an invisible wall of despair.

She waited for the water to boil, then brought him a cup of tea, setting it on the small table next to him that contained two books from the shelf near his chair, one of which he seemed to have been reading—To the Lighthouse by Virginia Woolf. The second was Sylvia Plath’s novel, The Bell Jar. Not a reader, Cheryl had seen the books before but had heard the names of the authors. Jerry remained unfocused on a window across the room. Cheryl left him there, took her iPhone with her to their bedroom, and called Sabina. “I don’t know how much longer I can take this,” she said flatly.

“You could bring some help in to care for Jerry, or place him in a home,“ said Sabina.

“I can’t justify the cost for a home,” answered Cheryl. “I know that there will be money coming in, but I don’t want to jeopardize the girls’ education. Besides, I have no reason not to take care of him myself. I took care of my father for years, but I thought those days were behind me. So here I am, back where I started, only with two daughters whom I adore, both in jeopardy.”

“You’re stronger than you think, Cheryl,” said Sabina. “And our lives aren’t fixed in time. They remain dynamic, always. You’ll need to set your own limits and priorities, and then stand by them until those limits change and you find your direction within all of the confusion. How are the girls holding up?”

“Sharon’s keeping her distance, but Jen’s supportive and helpful. She tries to talk with Jerry even when he’s not responding.”

“It’s Sharon’s age, as well as her own issues, Cheryl. This was bound to happen. You can’t avoid those teenage years, and Jerry’s illness doesn’t make it easier.”

“I don’t know where she is most of the time, and she won’t talk to me. It’s not just me. Sharon even snaps at Jen and is dismissive of her father.”

“She’s also a little like you, Cheryl. She doesn’t have an idea in hell of how to deal with any of it.”

“I think she knows.”

“Knows what?” asked Sabina.

“About the disease.”

“Has she said so?”

“No,” answered Cheryl.

“But you think she has the clues?”

“That’s my guess.”

“She needs to know that it’s not Jerry’s fault,” answers Sabina.

“It’s nobody’s fault!” exclaimed Cheryl.

“I hope what I’m about to say doesn’t get in the way of our friendship, but I do believe that you blame Jerry.”

Cheryl remained silent.

“And,” continued Sabina, “you seem far more angry than despondent over your situation.”

Still silence from Cheryl.

“I’m not blaming you, Cheryl. I’m just stating a fact. Give Sharon some slack. She’s still a kid. But she may come out of it better than either of us have the knowledge or ability to expect.”

After a further pause, Cheryl said, “Thank you, Sabina! You may be right on all points, except about my anger. What I feel is disappointment.”

“Anger and disappointment can present themselves the same way.”

“I’m trapped,” said Cheryl, pleading for an answer.

“That’s why many in the world believe in God, my dear. It doesn’t really matter if God exists, but it does matter how we respond to situations when they happen.”

“I didn’t think that you were a believer,” said Cheryl.

“I believe in a lot of things,” said Sabina. “One of those things right now is you. I also believe you love your husband more than you know, but you just can’t deal with his abandonment and eventual demise. I’ve also learned that people need to believe in something that’s larger than themselves, because we’re all only on this Earth for a short time, and we can’t waste that time on useless worry. Jerry’s done all he can to protect you and the girls. And from what you’ve been telling me, he’s using the precious time when his mind is clear to save the girls from their fate. Jerry’s a good man and I believe that he’ll die kno

Sharon, now 16, and Jen, at 14, led comfortable lives. Their father, a literary agent, was revered by authors and editors alike for his integrity, insights, and the mentoring he provided to young authors, clients, and publishers. Since partnering with David Brunhaufer, Jerry had positioned himself and his firm as a major player in the publishing world, helping to build it into one of the most successful boutique literary agencies outside of New York City.

At 48, Jerry Halpern had reached what many would call the pinnacle of his career and, thus, had been able to provide his family with the luxuries afforded them by his hard work, talent, and intelligence.

Jerry did not come from money, and had not expected that his passion for good stories would lead him to a life of better than modest privilege. He had married for love, not for wealth, and had maintained his passion for the written and spoken word while working his way through Georgetown University, climbing the ladder of success in business and mentoring young talent whose voices he had helped bring into prose, screenplays, and poetry. Along the way, Jerry had broadened his own vistas and had awakened others to new genres within the art of writing.

Neither of his daughters had yet matured to a point that mimicked their father’s intensity for a specific field of endeavor. Jen was perhaps too young to show signs of innate talent or to find a commitment to any endeavor, and Sharon, his oldest, was caught up in the frivolities of the moment and the opportunities afforded to her by her wealthy friends, neighbors, and school.

Cheryl, who had viewed her life through the accomplishments of her daughters, had envisioned few obstacles in the way of success. She was content to have used her adaptive skills to dress, speak, and act like other women in her realm. She had honed her mimicry to provide camouflage for her ignorance, while using the grit she had grown up with to position herself to be far more formidable in appearance and confidence than the damaged schoolgirl she had left behind.

She was thankful that her daughters would read books and make wise decisions because of the early relationships they had formed with other children of self-worth and knowledge. She had chosen, or had accepted, her role as an observer who continued to emulate the moves and high-tone speech and patter as accurately as she could.

In her job at the diner, she had met many men who would have been delighted to have her for a night or two. She had tempted them, but she had also seen through them and had never been angered by their suggestive jokes and comments. She had the posture of a runway model and a walk that she had practiced to perfection as she carried dishes to and from her diners’ booths.

When Jerry had come along, Cheryl, still young, had all but given up on men. They were greedy, small-minded, and interested in her only for the way she made them feel: youthful, charming, handsome, and important. It had not taken much to please them; after all, it was a diner where she worked, for God’s sake, and not a country club.

Like many other patrons, Jerry had found her vulnerable, endearing, and a woman with potential. He had courted her over breakfasts of eggs, bacon, omelets, French toast, and scrapple, and had tried to peek behind the mask she wore so well. But even as he and Cheryl had grown closer, she had remained hidden behind her apron, hairdo, nails, and the care she used when serving him his meal. He had succeeded in defining himself by proving his love for her. He had never thought it was his right to educate her, refine her, or make her feel the least bit inferior because, to him, she was perfect as she was.

Cheryl had married Jerry and had carried the burden of her early self as she grew into the role of a wife, not a waitress. When the first of her babies was born, her new daughter had taught her what it meant to be a mother and the skills and levels of responsibility it required. With the birth of her second child, she had begun to enjoy the fullness of her life—a gift that she had never believed was possible.

Cheryl had made attempts to express her love for her husband, at least as much as he expected, but her daughters were her inspiration and her release from the curse of a loveless youth to the blessings of an inspired world.

When the girls were still in elementary school, Cheryl had found Agnes Irwin, a school with costs exceeding the limits of Jerry’s financial position. She knew it would be worth it, and her husband had provided her with her wishes. His work had become ever more demanding, but he had continued to push past the safety nets to provide the illusion of wealth that Cheryl was sure would ultimately protect them all.

But recently, the chords of the nets were wearing thin, as Jerry’s mind was becoming withered, threatening Cheryl’s existence. It was not only Jerry, her bold knight who had won her love, who was destined to perish. It was, perhaps, also her own dear daughters who might succumb early in their adult lives and fail to have children because of their inherited disease, leaving Cheryl without any continuity beyond herself.

To her daughters, she now seemed hard and distant, most likely because she depended so much on them and feared for them so strongly. She had little of her strength left to show concern for her husband who, in her mind, had unwittingly provided a false sense of security.

Now, what did she do?

As Sharon grew into a formidable teen, she had perceived her mother’s ambitions being filled through her, but never to the extent to which she saw them now, following her mother’s loss of the oblivious self she had coddled before discovering this most recent revelation. The child in Sharon did not fault her lack of understanding, while the episode the previous evening had awakened the emerging adult in her, and with it, the responsibilities it entailed.

One might have looked at this as a chance for her to find a “sense of purpose,” the opening of a gate to pass through. After a restless night, she reached for her laptop from the table beside her bed and began to search keywords and passages brought up in the conversation the previous evening: insomnia, fatal diseases, the thalamus. Her search led her first to Parkinson’s disease, then to prion diseases, and finally settled on Fatal Familial Insomnia, or FFI.

While digesting the synopsis of FFI, Sharon froze as the impact became too personal. She prompted her AI app: Provide all you know about the impact on children of a parent dying from Fatal Familial Insomnia.

After reading the stats of the disease, and the possible deadly 50% impact on children of a single parent afflicted by the condition, Sharon realized that her mother’s “hardness” had not been coldness, but rather terror, and her father’s desire to protect her and her sister was a canopy of hope to shield them from his fate.

Sharon rolled over on her side and closed her laptop, but instead of sleeping, she traveled back in time for clues to her parents’ silences, since neither had chosen to waken her or her sister from the peaceful bliss of childhood.

--------------------------------------

It took a while for Cheryl to calm herself after arriving home to see Dave and her daughters in the living room waiting for her. Unbeknownst to her, Jerry was upstairs in an incoherent state, staring blindly at the ceiling. Once she noticed that no one else was panicking, she relaxed and asked Dave why he was there. He let her know that her husband had cut his visit short and was in their bedroom.

Instead of rushing upstairs to see for herself how her husband was, she asked Dave, “Why didn’t you call me to let me know that Jerry was coming home a day early?”

“In the confusion of it all, I simply forgot, and then when I finally remembered to let you know, your phone passed my message on to your voicemail.”

Cheryl still made no move toward the stairs, but instead said to Dave, “Knowing that Jerry wouldn’t be home until tomorrow, I took the night off and went to dinner with a friend. I turned my phone off when we arrived at the restaurant. I seldom look at my voicemail.”

“It was my fault, Cheryl,” Dave answered apologetically. “I thought it would be helpful if I picked him up for you, but then... I’m sorry, I screwed up.”

Sharon then spoke up. “Remember, Mom, I asked you if Jen and I could have some friends over for a get-together. Mr. Brunhaufer arrived here with Dad shortly after everyone arrived. Two of the boys helped Dad up to bed, and I asked everyone to leave soon after he came. Mike and Dan thought Dad was drunk, but Mr. Brunhaufer explained to Jen and me that Dad has been sick, and then told us that Dad was so sick that he was most likely going to die of his illness. Did you know about this, Mom? If so, why didn’t you tell us?”

Instead of answering Sharon’s question, Cheryl turned toward Dave and shouted, “You told them everything?”

Dave responded, “I told them the truth about their father. He has a disease and most likely has only a short time to live.”

Cheryl realized from Dave’s disclosure that he had not mentioned the possible heritable consequences of the disease, so she backed off any challenge, faced her daughters, and said, “I should have told you both, but there didn’t seem to be any right time to bring up the subject. I hope that your father will still have time to personally tell you the seriousness of his illness, since we agreed that it was best that we wait until his illness became more obvious.”

“So, you can see now, Mom... you missed that opportunity,” said Sharon sarcastically.

“I don’t know that any time would have been the right time,” answered Cheryl with a sigh.

Dave redirected the discussion by updating Cheryl on Jerry’s visit to Oregon. “Just so you know, Laura’s decided to take on the challenge of writing Jerry’s story.”

“What story?” asked Sharon.

Cheryl looked over to Dave with concern, and then attempted to answer Sharon’s question without fully disclosing the reason. “Your father’s disease is rare, and Ms. Hillenbrand is a famous author and has written two best sellers that were turned into movies.”

Dave stepped into the discussion, offering a more definitive synopsis. “Laura hasn’t written a book in 15 years,” he said. “Since she has a disease that shares similarities with symptoms of your father’s, she believes, as we do, that his story might encourage further research that may prolong the lives of those with illnesses similar to theirs.”

“What makes Dad’s disease so special?” questioned Sharon.

“It’s very, very rare,” offered Cheryl. “And we all hope that scientists will find a cure for it, if and when they become more aware of it.”

“How rare is it?” asked Jen.

“In your Dad’s case, only 1000 people in the world suffer from it, so, it’s that rare.”

“Could scientists save Dad’s life if they find a cure?” continued Jen.

“No, but if they create a vaccine for it, or modify a gene to stop it from harming people, other people in the future may be saved by it. And that would make your dad a hero.”

“So all of the doctors, at this moment, agree that there’s nothing that can be done to save Dad’s life. Correct?” questioned Sharon.

Dave took over the answering from Cheryl. “It will no doubt take many years for researchers to develop a drug for a disease that only presents itself after it’s inflicted severe damage to the thalamus, the region of the brain that is the control center. Scientists first need to find a method of diagnosing the disease prior to the development of symptoms.”

“And Dad didn’t know he had it until he couldn’t sleep?” asked Sharon.

Dave answered, “The doctors thought he might have had another problem, but then they used a machine that showed that his brain had already been affected by the disease.”

“That’s awful,” said Jen. “There must be something we can do to help him.”

“You can be kind to your father, and tell him you love him,” said Cheryl.

“There are still times that he is able to hear you, and he’ll cherish the kind words and know that you care,” added Dave.

“I‘m going upstairs to see how he is,” said Cheryl. “I’ll call down if he’s responsive enough to talk with you. And, Dave, you should be getting home now. You’ve done enough for now. Thank you for driving Jerry home. We can talk later.”

Dave looked at his watch and nodded. “Yes, I should be going. Please call if you need anything, Cheryl.”

As soon as Dave left the house, Sharon called to her mother, who was on her way upstairs, and confronted her.

“When did you find out that Dad was sick?”

“Just a few days ago,” Cheryl answered.

“And why didn’t you choose to tell us?”

“I didn’t want to upset you.”

“But he’s not just sick, Mom. He’s dying!”

“I thought he’d be able to tell you himself. I didn’t think he’d be this bad... this soon.”

“We knew something was wrong. At least, I did,” said Sharon. “It might have been caused by his job, or maybe you had something to do with it. Speaking of that, where were you tonight?”

“That’s none of your business... but I was with Mrs. Wister.”

“Does she know that Dad’s going to die?”

“We spoke about that, along with other things.”

“Other things! My God, Mom. Dad’s going to die and you talk to Mrs. Wister and not to us, your daughters! Do you think we’re that fragile? And now we had to learn about his diagnosis from Mr. Brunhaufer.”

“As I said, I wanted your dad to talk with you about it. I didn’t think it was my place...” continued Cheryl.

“And tonight, Jen and I have been laughing and carrying on with friends here at the house, while you were out chatting and having a nice dinner with your closest friend. Why didn’t you go to Oregon with Dad to help him and make sure he was able to travel?”

Jen began sobbing again as she watched her father walking carefully down the steps, holding onto the banister with both hands. Cheryl turned as he released his hold with his right hand and waved it in his wife’s direction.

“It’s my fault,” Jerry said feebly. “It’s not your mother’s.”

They all watched him shuffle from the bottom of the stairs into the living room.

“I was the one who didn’t want your mother to tell you. But it seems I waited too long.”

Both girls rushed forward and put their arms around him. Jerry smiled weakly as he looked toward Cheryl, hoping she’d come to his side with the girls, but she remained rigidly in place.

Jerry asked Sharon to help him get seated, and both girls walked beside him, propping him up as he settled into his reading chair. Some of the color came back into his face as he adjusted his position and crossed his legs.

“I shouldn’t have gone on that trip, but I thought I’d be okay,” he stated emphatically. “Your mother tried to talk me out of it,” he lied. “But I was determined to go, before I reached the point when I wouldn’t be able to travel.”

“Why now, Dad?” asked Sharon, as if not totally convinced by the version of the story that she had been told by her mother.

“I believed I had to personally meet Ms. Hillenbrand, who Dave and I hoped might write a convincing story about my illness. The purpose would be to assist with expenses for you and your mom.”

“And you’re sure doctors can’t help you?” asked Sharon.

“Unfortunately, they have no way yet of knowing that I was stricken with it until they saw the PET scan, and once they saw that an area of my brain was dying, they knew they had no way to reverse the damage. I didn’t want to tell you girls about my condition until after I met with Ms. Hillenbrand and was assured that she’d take on the project. But I started to feel weaker after I arrived at her house, and by the next day I knew I had to return early since I was clearly non-responsive. I swore your mother to secrecy because I didn’t want you both to be needlessly worried. If I could have kept it from her I would have, but I needed her help. I’m sure it was painful for her to hide the news from you.”

Sharon looked toward her mother, who, despite being quiet, was dressed nicely, with her hair recently trimmed and her face fully made up. “You don’t look all that upset, Mom. There’s got to be more to this story.”

Jerry again defended his wife. “She had to pretend everything was the same as usual. It’s all my fault.”

Jen reached around the back of Jerry’s chair and hugged her father. She told him that she loved him, and Sharon followed suit. Cheryl remained still, having no idea of what to do or say, before finally walking over to Jerry and kissing him lightly on his forehead.

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