A Literary Ending
This short novel is a work of fiction that weaves real history, living individuals, and imaginative narrative together.
Certain characters in these pages—including the author Laura Hillenbrand, members of the Wister family lineage, and related historical figures—are real individuals whose public achievements, published works, and documented personal resilience I hold in the highest regard. Their inclusion is intended as a sincere literary tribute to their enduring contributions, strength, and cultural impact.
However, while the professional achievements, historical backgrounds, and public contexts mentioned are drawn from reality, all personal interactions, private conversations, relationships, and specific dramatic scenarios depicted in this narrative are entirely the product of the author’s imagination. They are used solely to serve the thematic and creative needs of the story and should not be construed as factual accounts, historical records, or reflections of the actual private lives, opinions, or future plans of the individuals portrayed.
Jerry Halpern had just brought the suitcases down from the attic for himself and his wife, Cheryl. His two teenage daughters used backpacks and weren’t bothered by the wrinkled clothes they stuffed in their sacks, nor by any of the other preparations for their trip to the rental house on 34th Street, a block from the beach in Avalon, New Jersey.
Jerry and his family lived in Radnor, Pennsylvania, in a 150-year-old stone and clapboard house with a swimming pool dating back to the 1950s. Over the years, the house had become his hobby, since the upkeep and improvements had occupied any free hours with tasks he and Cheryl took on when they began occupying the property twelve years prior.
Jerry understood the math of Avalon, even if he didn’t like the result. He was paying a premium for a smaller pool, a crowded waffle house, and a lack of privacy. But the girls loved the scent of the salt air and the hierarchy of the beach—the invitations from friends whose parents owned the grander homes on the dunes. Jerry was a renter, a man providing a backdrop for his daughters’ summer, and he was fine with that. It was part of the contract.
His girls, Jen and Sharon, loved the beach, the atmosphere, the summer breezes, and the scent of the ocean. They also loved the freedom from responsibilities, as there were few rules for them in New Jersey. Cheryl cooked, and Dad paid for the pizza—and they had friends down there whose parents owned homes even bigger than the one they rented and also had the financial luxury to invest in a home used only on weekends, or sometimes only once a year. The girls just knew that they were invited guests, while their parents were renters.
It was a topsy-turvy world of wealth over intellect, of birthright over skills.
His stash of books was a mountain of first impressions. Most hadn’t enticed him past page three. They’d already been filtered by twenty-something readers, judged for “vibe” and marketability—stories designed for airport stands and seaside shops. Jerry’s talent was the “fix.” He looked for the 70,000-word thriller or the 120,000-word epic that actually had a pulse. It was a gladiatorial trade in a dying arena, but it was the only one he knew.
His hope, at that point in his career as a literary agent, was to discover a novel nearly ready for a film adaptation—a script written for a producer or a screenwriter who knew the vibe of an audience with the patience to endure a two-hour blockbuster film or an eight-hour series that might survive a second season.
But now the tables had turned once again, and the AI generation of films had been zeroing in on plots previously unsustainable for an audience previously unattainable, using characters that appeared so close to being human that they just had to be real... but often weren’t.
Actors were still somewhat necessary, but their words or actions were of little consequence, since they could be altered later.
Jerry kept hoping for one memorable character, a plot, or a storyline that touched his soul as well as the interest of a listless reading public. But as the years crept up on him, the stories stopped mattering, the plotlines had thinned, and the attention span of the readers had been reduced to explosions, expletives, and words that wandered aimlessly from scene to scene.
The majority of his angst he kept from Cheryl and the girls. It was they who craved the scent of the ocean and the hot sand under their feet. It was also they who longed for friends on a higher financial plane than theirs. His trip home or to his office was less than two hours from the beach if he left early enough. Meetings and workload were Jerry’s excuse to make an exit at 6:00 a.m. and return to the not-quite-seaside rental by 5:00 p.m. for cocktails. He hadn’t been sleeping well for months, a condition that left him diminished and inarticulate by the time he returned to the shore every other evening.
The pressures were real, while the rewards were smaller. His staff was younger and could party later, while all he longed for was a good night’s sleep, which he rarely got. Often he was awakened by a car horn behind him at a stoplight or became drowsy to the point of pulling over at a yet-to-open fruit and vegetable stand near Mullica Hill in the early dawn.
He had been prescribed Xanax by his doctor for anxiety, and he could dangerously lose consciousness any second while driving. He refrained from other sleep aids, often picking up a book during the night while remembering none of what he had read that very evening.
Despite the difficulties, Jerry loved his job... or the job he used to have. He’d grown up a reader, but discovered early on that he had too little patience to write essays, stories, or non-fiction of any length. But he could toss off a review in twenty minutes or less, and so began his career as a syndicated columnist after earning a post-graduate degree in creative writing from Villanova University in 2001.
Still living with his parents in the Philadelphia suburb of Haverford, and realizing that he’d have to have a “real job” in order to live productively on his own, he applied for several writing jobs based on his columns and was recruited by the William Morris Agency as a literary assistant, sharing a city apartment with a friend as he progressed through the Morris Agency Training Program.
His skills were recognized early on by the firm. He was a talent spotter, a man who could find the “fix” in a messy manuscript and turn a newbie into a mainstay.
But the arena was emptying. The new threat wasn’t just a lack of readers; it was the arrival of the “automated ghostwriter.” AI was saturating the market with stories designed by algorithm to hit every emotional beat of a Nora Roberts romance or a Tami Hoag mystery. These books were technically perfect, heartless, and—most alarmingly—profitable. The public didn’t care that the bios were fictionalized or the authors were lines of code. They just wanted the “vibe.”
To Jerry, it felt like the world was moving toward a “wealth over intellect” model he couldn’t edit his way out of. He kept hoping for one memorable character—a storyline that touched his soul—but the plots were thinning, and the public’s collective attention span had been reduced to explosions and aimless expletives. He was a man trying to sell fine wine in a world that had developed a sudden, violent taste for stout.
Without the resources, he reached out to smaller publishing houses, and through them he was able to merge his catalogue of authors with the Brunhaufer Agency, housed in a subdivided bank building on Philadelphia’s Rittenhouse Square, understaffed but recognized for the quality of its authors, especially in the area of speculative fiction. Prior to his interview with Dave Brunhaufer, the 62-year-old co-founder of the firm, Jerry critiqued five works by Brunhaufer authors as a way of showing his enthusiasm and professionalism for a partnership, all while attempting to maintain the interest of the publishing industry’s catalogue of authors.
With two pre-teen daughters, a wife, and a mortgage on his overvalued home, Jerry pushed forward, working long into the night while trying not to let his work interfere with his family life.
Jerry could tell that the industry was changing, as many in his catalogue of authors were looking past the sale of their book rights to licensing agreements with movie studios, often without obtaining a publisher. Then AI came along and began to saturate the market with well-written and interesting stories designed to appeal to specific segments of readers. Although never settling on a specific genre such as romance novels similar to those of Nora Roberts or mysteries by writers like Kelly Garrett, the artificial books were being marketed and promoted as works of a new breed of writers with pseudonyms and bios that obscured their AI identities.
Jerry had read a few of the works of these automated “ghost writers” and after some research learned that although the plots, characterization, and language were captivating, the authors were not, in fact, human. What was most alarming was that even after these books published by fictionalized authors were discovered, the readers didn’t seem to notice or care about the identities of the writers, leaving human authors, agents, and publishers in a quandary about copyright credentials, contracts, and royalty payments.
It was concurrent with the issues faced by his industry that Jerry first began to experience frequent bouts of insomnia, so he assumed that his anxiety was the logical result of his wakefulness, and his GP kept providing him with a prescription for Xanax. From a medical standpoint, Jerry’s vitals, as assessed by his blood tests and recent physical examination, showed no abnormalities requiring further tests. His blood pressure and his cholesterol were a bit elevated, so his physician also recommended atorvastatin to reduce his cholesterol as well as lower his blood pressure, but that was all.
At 48, Jerry had reached the prime of his working life and believed he could endure industry changes as well as satisfy the needs of his family. It had only been during the preparation for the Avalon vacation that Jerry had begun to experience intense anxiety over his sleeplessness. To counter his worries, he had upped his dosage of Xanax to twice what his physician had prescribed, rather than ask for a different medication or seek therapy.
Instead of improving his ability to relax, the elevated dosage of Xanax had only increased his drowsiness, a danger especially while driving to work in the early mornings and then returning in late afternoons to the shore.
The exhaustion triggered a memory Jerry had spent thirty years ignoring: the winter of 1990. His Aunt Hazel, once the most animated woman in the family—a high-speed realtor who gardened with a fierce perfection—had vanished between Christmas and February.
He remembered the hushed, urgent tones of his mother, Dorothy, on the upstairs phone. “It’s the same sickness as my mother had, Ed. She lasted less than a year.”
When the funeral came, Jerry was barred from the room. His mother had dressed in a cold, conservative black, her eyes hard and dry. “You’re too young, Jerry. It was sudden. She just needs rest.”
The “rest” had turned out to be a mahogany casket and a family pact of silence. No one ever spoke Hazel’s name again. No one explained why a vibrant 43-year-old woman had simply stopped sleeping until her heart surrendered. At 14, Jerry had accepted it as the “adult mystery” of death. At 48, staring at the flicker of his own dashboard lights near Mullica Hill, he realized it wasn’t a mystery at all. It was a preview.
As the years went by, Aunt Hazel and the cause of her death were never brought up, and Jerry’s questions were left unanswered. Whatever his aunt had died of remained a mystery. Although Jerry was inquisitive by nature, he had found no urgency to address the issue, especially as he himself passed the age of her death and displayed no symptoms.
Knowing that he was hyper-anxious because of his workload and the fragility of his business, Jerry didn’t choose to elevate his anxiety, but did finally contact his doctor and let him know of his sleep dilemma. He took the Xanax for the nerves and the statins for the heart, treating his body like a manuscript that just needed a few more edits to pass final reviews
Because of the dangers on the road, his doctor referred him to a sleep specialist in Paoli for a sleep study, during which a technician would attach electrodes to various parts of his body and then monitor his brain waves, heart rate, and movements.
Jerry was fearful that he wouldn’t be able to sleep through the night, but his doctor told him that the specialist would only require about two hours of uninterrupted sleep for the test.
The sleep study was a red flag. The report showed thathis brain flatlined at “light sleep,” never reaching the restorative depths of REM. It wasn’t a psychiatric glitch. The subsequent PET scan of his thalamus came back dark and cold. In the clinical language of the neurologist, the control center of Jerry’s brain was being dismantled.
Since Jerry was otherwise healthy, the neurologist asked Jerry for his genetic family history, which Jerry didn’t have. The only clue to his diagnosis was the genetic tie to his mother’s sister, who had died at the age of 43 of a newly discovered genetic disease named Fatal Familial Insomnia, or FFI, in the 1980s, and her mother, who had died mysteriously in her late 40s in a similar fashion, well before the brain disease became known.
The secret had been held in the hushed tones of his childhood. His mother had watched her sister vanish into the same darkness in 1988, just as her own mother had years before. She had kept the truth from Jerry to protect his peace, even as he married Cheryl and fathered two daughters. Now, the 50% gamble of his birthright had come due. The “medical mystery” had turned into a nightmare, closing in on a man who just wanted a night’s sleep.
Even after Jerry began to exhibit symptoms of FFI, his mother was still in denial, until she could keep the secret no longer.
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A Literary Ending - Chapter Two - The SecretAfter consulting with his doctor, Jerry called his mother, who answered the phone pleasantly, but with a trace of hesitation, as she had done many times in the past when hearing from her son.
“Well, hello, Jerry. How are things going in Avalon?” Dorothy had just turned 83, but always seemed younger than her age on the phone.
“Hello to you, Mom,” Jerry answered back curtly, and proceeded to tell his mother about his recent sleeplessness, the tests, and a possible cause of his imminent illness.
Dorothy listened quietly as Jerry spoke in an measured tone about the very real possibility of having a rare inherited disease that was, at this time, incurable. As part of his questioning, he asked his mother if there was anything she needed to tell him about his condition.
There was a pause on Dorothy’s end of the line, after which she began to speak haltingly. “I don’t know what to say, Jerry. Except that I am...so sorry.” And after that Jerry heard crying over the line. He waited a while until the sobbing became a sniffle, and then responded softly, “So, what happened, Mom?”
At first it was difficult for Jerry to understand her, since she blurted out a series of disconnected facts that made little sense. Finally, she calmed down enough to explain the circumstances of her mother’s death in the 1960s. Jerry’s grandmother was in her late forties at the time and had told her husband, Walt, one night that she recently had become very tired and couldn’t seem to get a good night’s sleep. Finding nothing physically wrong with her, her doctor prescribed Valium for anxiety. Over the next few months the drug seemed not to help her sleep, and she then began to experience bouts of shaking and twitching. Her blood pressure increased, so her doctor put her on a new drug, verapamil. After two months with no improvement, she was losing weight and experiencing hallucinations. Her doctor decided for her to discontinue the use of all drugs. The symptoms continued and within six months she began to experience paranoia and other signs of severe dementia. She died within a year of the onset of her illness without any clear prognosis.
“I tried to find out what had turned an otherwise healthy person into an invalid so soon, Jerry, and since she seemed to die of natural causes, no autopsy was performed. There was some talk from her doctor of her having a neurological disease, but all he could do at the time was offer ‘guesses.’
“Then when her sister, your Aunt Hazel, developed some of the same symptoms in the 1980s, Walt and I told her doctors about our mother. But at that time there were no PET scans, and the disease remained undiagnosable and untreatable after her death.
“The doctors had suspicions that Hazel’s death was caused by the same disease that our mother had, but their consensus was inconclusive.
“I, of course, had concerns that the two deaths were connected, and it appeared that they might be genetic, but not enough information was known in the 1980s to research the problem. I had only the hope that you or I wouldn’t contract a similar disease.
“By the time you and Cheryl married, and you had the girls, more information had become available. But at that point I didn’t know what to think or what to say. It was only after both of your daughters were near school age that I heard of FFI, and of it being a very rare and incurable disease. The worst news was that there was a 50-50 chance of a close family member contracting it at some point during their mid-life.”
Jerry interrupted his mother and asked, “So, why didn’t you let me know what you knew, Mom?”
“It’s a poor excuse, I know,” answerd his mother.“ I didn’t want to worry you. I was over 50 and in good health, and after you aged past 40, and you didn’t show any signs of the disease, I intentionally blocked it from my mind. Having become quite sure that with all of the genetic testing being done, and no signs of any illness in any of us in the family, I assumed we’d all be okay. You, me, the girls... all of it caused by a misunderstanding on my part.”
“But you knew...Mom! I can’t believe that there wasn’t a time that you could have alerted me to the possibility of a disease when you knew about the possibility of a devastating out-come .”
“I didn’t really know, Jerry. I only suspected there might be a possibility. I didn’t want to be an alarmist. In many ways, I’m as surprised as you are. What could I have done? Tell you not to get married or have children? Let you know that you might not live to see your grandchildren?
“That was the hardest part. Imagine me giving you and the girls a 50-50 chance of a death sentence without any concrete proof.”
“Did Dad know?” asked Jerry.
“He knew what I knew, but that was all. We even talked with our doctor and our minister about our fears. They were of no help. We spoke with a neurologist about it after Hazel died, but there wasn’t enough evidence for them to go on. If Hazel had had a brain scan, they might have found the tiny holes and shrinkage of her thalamus, but MRIs weren’t sophisticated enough in the 80s to catch a rare disease like FFI, and doctors could only hypothesize concerns, not having any means to act on them.
“So, yes, we knew something about a genetically passed on disease, but not enough to frighten you and your family. There was nowhere we could turn to confirm our suspicions of Hazel’s or our mother’s brain metabolism.”
Dorothy apologized once again, but Jerry, although still angry, was able to put himself in his mother’s position, since some of his concerns were hers. He had two daughters. Either one, or both, could die early without having children of their own and harboring their same fears.
In that moment, Jerry realized that he had limited time to rescue his daughters from his own fate. And even if he couldn’t live to alter the path for them, he could do everything possible to fight for them to secure their future...besides serving them a death sentence.
Jerry understood that his mother really had had no choice. The technology hadn’t been available to save his grandmother, aunt, or him, but he was living in a time when he could play an active role in preserving the lives of his children, grandchildren, and many future souls in his family from an identical fate.
“Mom,” Jerry said quietly. “This isn’t your fault, but I’m glad I know my mission. It’s a much grander plan than any I might have chosen. While I’m able, I want to take care of my family and protect them from our family’s demise.”
“The first thing I’ll do is speak to my partner at the firm, and work out an arrangement. And then I’ll speak to Cheryl and the girls so that they have the time to understand my fate... but also my mission to do all I can to protect them all from the position we’re now in. They’re old enough to know what’s going on, and Cheryl’s a strong and resourceful woman.
“So, thank you, Mom. Let’s work together on this with Dad. I’m sure he’ll understand.”
“In his way, he’s always understood, Jerry. It’s always been me who hasn’t.”
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Jerry was exhausted, fearful, and confused by the information his mother had confessed to knowing. On one hand, he was shocked by the limited time he had left to live, and the realization that he would immediately need to confront his wife with the grim diagnosis of his disease. What was worse, though, was the thought that he would have to pass on to Cheryl the knowledge that their daughters might devastatingly be impacted by the diagnosis and that their lives, from this point forward, would carry the burden he had brought on to them.
Jerry realized that he’d need to select a friend, or a confidant, someone he trusted implicitly, to assist him on his journey. And he also knew that he had to make this and other decisions while being sleep-deprived, and experiencing a decline in his mental abilities and the nightmarish hallucinations that would soon pervade his thoughts.
Unlike his parents, who identified themselves as Christians, Jerry had lived his entire adult life without a belief in God. Cheryl was also a non-believer, but had gained an innate understanding of her purpose in life the moment she knew she was pregnant with their first child, Sharon.
Jerry knew that Cheryl was the more essential parent to their daughters. She was more than a mother, wife, and companion; she was the stabilizing force of the family and the glue that held their relationship together. Jerry had been comfortable being secondary in value, and understood that Cheryl would, by her nature, hold him responsible for the transmission of the disease to them, at whatever age they might develop it after he was gone.
Reflecting on his mother’s reason for holding back information on a disease that she might have suspected to be heritable, he understood that there had been no easy choices for her over the years. Either way she might have been wrong, and had counted on God to answer her prayers.
The $1 million life insurance policy he had purchased ten years ago might assist in his family’s financial survival after he was gone, but the policy mught not be enough to cover the cost of the care he’d require prior to his death. He also knew that if he chose to “do himself in,” the policy might become null and void.
On his way out of the parking lot, Jerry received a message from Cheryl, telling him that she and the girls had just returned home from the rental. Thus far, she had been made aware only of the sleep test and the PET scan prescribed, but had not yet received the results of any tests or the prognosis.
Under the circumstances, Jerry realized that there was no time to waste before taking action. Any delay would only add to his upset and would appear evasive to Cheryl rather than constructive. Although he and his partner had never been the closest of friends, he made the decision to trust in Dave’s judgment prior to confronting his wife.
Dave, 14 years Jerry’s senior, was respected by clients and publishers alike for his thoughtful approach to literature. Although Jerry’s diagnosis would no doubt be a shock to Dave, he knew that his partner processed information quickly and was most likely the optimal person to confide in, especially now, during the initial planning stages.
While veering right on Walnut Street, Jerry picked up his phone and called Dave.
His partner was cheerier than usual and asked, “Welcome back! How was the shore?”
“What can I say?” answered Jerry. “It was the shore [he forced a chuckle], and you know that I’ve been working rather than enjoying the sand and the surf.”
“I’ve suspected as much. Why the call?”
Without hesitation, Jerry blurted out, “I’ve just come from my doctor and have been given some unpleasant news. Because of it, we have to talk. But I’m also in need of your advice and counsel.”
There was a pause, as Dave struggled to comprehend Jerry’s message, but he answered flatly, “Whatever you need, Jerry.”
“Are you busy now?” asked Jerry. “Or should I stop by later today?”
“Nothing that I have going on is that important that it can‘t wait,” responded Dave.
“I’m only a few minutes away, Dave... I really do appreciate this.”
He found his way to the parking lot and took a ticket while formulating his thoughts for his talk with his partner. What he didn’t want to do was overwhelm Dave with details or the emotional magnitude of the upset he was feeling.
Upon arriving at the agency, Jerry was welcomed back by the staff and escorted to Dave’s office. He put on a smile and tried his best not to show the gravity of the situation.
Dave’s door was ajar and he knocked before entering. Dave got up from his desk, walked towards Jerry and put an arm around his shoulders, something Dave’d never done in all the time Jerry’d known him.
“It must be bad, Jerry,” said Dave. “You know that we’ve seldom talked about our lives over the years. Sit down and let’s go through it.”
Dave led him to the leather chair that faced his desk, and then walked around the stack of manuscripts he moved so that they could face one another.
“I’ll start with the worst of it, Dave. I’ve got less than a year to square up everything in my life before I’m either dead or not worth shit.” Jerry paused. “At best, I have another six months before I’ll be a burden to myself, my family and the world.”
Dave folded his hands together and looked squarely into Jerry’s eyes. “I’m here to help, however I can. Tell me what’s happening and what you need of me.”
For the next thirty minutes, Jerry poured out a condensed and somewhat confusing report of his symptoms, including the sleepless nights and weariness, and his final diagnosis of Fatal Familial Insomnia. He also spoke about his discussion with his mother and his family history that, if not hidden, was ignored by his parents and other family members. He also spoke with great emotion of having to tell his wife the truth about the disease that would possibly pass on to one or both of his daughters, as well as any children they might have.
“Imagine, Dave, you do everything right in life, as Cheryl has, and then she finds out that there’s a time bomb ticking in her husband and her daughters.”
Dave stopped him at this point and asked, “Is there absolutely no cure on the horizon? Something that might stop this disease from being passed down?”
“Frankly, I don’t know,” answered Jerry. “And neither does my neurologist and my doctor.”
“This isn’t the 14th century, Jerry. Cures are being found every day for little-known diseases.”
“There are only 50 to 70 families in the world known to carry this genetic mutation. At this exact moment, Dave, I am one of less than 1000 people in the country who have it. They’ve told me it’s a prion disease, whatever that is, but what it means is that the odds of one or both of my daughters of having it are 50-50. What I do know is that it’s a rare and a rapidly progressive neurological disorder that is always fatal.
“In answer to your question, yes, there’s an outside chance that a gene-editing device called CRISPR could, in the next few years, find a way to ‘silence’ the single gene that causes it, if they can find and correct the ‘typo’ in the gene. If discovered and fixed prior to any signs of the disease, my daughters may be granted immunity. But this specific gene is such a rarity, that it’s at the bottom of the list of thousands of diseases being studied for genetic alteration.”
“But there is hope?” asked Dave. “Not for you, but for your daughters?”
“There’s always hope, but that’s going to be a hard sell for Cheryl and the kids. Nobody even knew about FFI—that’s what it’s called—until the 1980s, so my mother had every reason to keep quiet about the deaths of her mother and sister. But there’s no place for me to hide it from my family, or offer any great “hope“ of a recovery.
“My life is over, Dave, and that’s the next thing on my agenda. How I manage the financial burden along with the emotional trauma I’ve inflicted on my family as well as my responsibilities to this business.”
“I understand the issues with your family, Jerry. But as we all know, anyone can be replaced in a business. As far as your financial concerns, you not only have an insurance policy for your family, but our firm also has a life insurance policy on you as a partner.
“When you pass away, your wife will succeed you as a partner in the firm. This was contracted when we first entered into the partnership. And we both were required by law to have an insurance policy on each other.”
“And how much was that for, Dave?”
“I believe each was for $1 million. Since you know that you’ll most likely die within a year, you will help us find your replacement. With that person in place, you remain a partner until death and then the firm gets a payout. Your wife sells your share to the firm for your half of the policy amount, which would be $500,000.
“So she won’t be broke, Jerry. And the firm’s medical policy will cover a great deal of your medical expenses, while you continue to get your salary paid until you pass away. This all was stated in our agreement.”
“But I won’t be really working after a few more months. I’ll be worthless here,” said Jerry.
“I don’t think that will be the case.
“As I’m listening to your story, I find it fascinating. I believe that many others will also find it equally interesting. My suggestion is that you consider becoming a client of our agency as well as a partner.”
“But you know that I’m not a writer. I’m good at what I do, but I’m not skilled at the craft... or have that kind of talent.”
“Let me stop you there, Jerry. You work with many skilled writers, and you’ve sold many of their stories to publishers. Pick a writer from your list, or I will from mine. He or she will do the heavy lifting of the writing, while you provide the story now and your co-writer will follow it along until your death, or maybe even afterwards.
“I know it seems crass,” continued Dave as he sat back in his chair, “but imagine you’re being interviewed about the rarity of your disease and the plight of your family. I can see the film rights being sold even before you pass on.”
Despite the horror he felt, Jerry had to smile at the gleam in Dave’s eyes as he seemed entrenched in his partner’s death.
“Why are you smiling, Jerry?”
“Perhaps because you seem so enthused about the possibilities, or maybe because it could be an answer to my dilemma. If the disease gets attention through interviews with me, as well as a book or a film, scientists may just spend some time on this little-known disease. Cheryl might use some of the money earned to create a foundation for finding a cure. The girls are only in their teens now, but their story would be of greater interest to the public than my death, and they might also play a part in helping those 50 to 70 other families who carry the same gene mutation.”
“That would be the big payoff for you and your progeny,” answered Dave.
“Thanks for giving me some hope. It doesn’t make my trip home any more palatable, Dave, but I feel better about the news than I had before talking with you. Now I’ll see how Cheryl will react.”
“It won’t be easy, Jerry. But then, life isn’t always a picnic. How are you feeling right now?”
“Not great, but not too bad.”
“Well, then, after you’ve spoken with Cheryl, let’s talk seriously about the plan.
“I’ll be sorry to lose you, but you may not fade away quickly, especially if we can put together the right package.”
“I can see why you’ve continued to be sought after as an agent, Dave. You’re always looking for a good story.”
“Yep, and some of them, just by chance, drop in one day with a blockbuster.
“Go home and make peace with your family, and then, if you feel well enough, come back in tomorrow and we’ll see if we can find you a writing partner.”
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Jerry picked up his coffee at the counter, paid the barista, and zeroed in on a small table facing the parking lot. His mind spun with thoughts of the interpersonal experiences he had missed by focusing on his career. As he added sugar to his drink and took a sip, he looked back on moments he had put off or never shared with his family: a Christmas holiday in Germany, a Caribbean cruise, backpacking along the Appalachian Trail. He realized that he had raced to keep the momentum guided toward the impending costs to maintain a provisional safety net for his daughters and wife. Both girls were then approaching college age, and the expenses, including their private school tuitions, had mounted since they had reached their teens. The future no longer existed. He had placed too much importance on it, and now it was gone.
He then focused on Cheryl’s life without him. She was 46 and still a very attractive and appealing woman. She would no doubt find a man and remarry, and that “some other” man would be standing at her side at both daughters’ graduations, would walk them down the aisle at their weddings, and would be the grandfather to their children, who would never really know Jerry except from photos taken long before their mother had given them a new father.
Jerry did not choose to be jealous, but he knew that he was already seething at the thought. He did not want to be angry about his fate, but could not seem to help himself when it would also affect his family.
Staring at the cars lined up waiting for their orders at the pickup window, Jerry anticipated Cheryl’s reaction while looking into her eyes as he confessed his nightmare. The pep talk Dave had given him about hope for his family’s future had dulled since their meeting, and his anxiety had already amplified, catching hold of him since he had left Dave’s office with a “better than expected” vision presented by his partner. After gulping down the remainder of his drink, Jerry got up from his seat, tossed the Starbucks cup into the trashcan, and headed to his car.
He looked at his watch and noticed that he had now delayed his confrontation with Cheryl. Pulling into his driveway, he viewed his house and yard and saw them, as if for the first time, and realized how good he had had it. The 40-year-old Tudor-style home with its manicured lawn and trimmed hedges had been his sanctuary—a reward he had assumed he deserved from the long hours he had worked, as had been the BMWs he had leased every few years as a bonus for his diligence.
Soon he would not be able to drive his Bimmer, and those little luxuries would not sustain him as his functions continued to die and memories melted away along with whatever new dreams he would still desire.
When Jerry reached his home and got out of his car, he slapped his face with both hands to fully awaken himself and spotted a car he did not recognize as it pulled to the curb. A thin male driver jumped out and ran toward the same door Jerry was going to enter. Jerry watched the man, most possibly a teen, dressed in skinny jeans and a t-shirt, with at least one arm darkened by tattoos. Jerry ducked behind a hedge located at the corner of his property as he spotted his older daughter, Sharon, opening the door, looking left and right before tumbling forward into the boy’s arms, and then closing her own arms around his neck and planting a kiss firmly on his mouth. Jerry had no idea whether Cheryl was home or not, or whether the boy had seen him standing by his car. He stayed where he was, not quite sure about what to do, and then sneaked back along the shrubs and quietly reentered his car to wait.
After settling into his seat, he suddenly fell asleep, and when he awoke, he noted by his dash-mounted clock that he had been asleep for twenty minutes and that the car previously parked at the curb was gone.
Meanwhile, despite his pledge of secrecy to Jerry, Dave almost immediately contacted Cheryl after Jerry left the office. He was not sure if it was the right action, but from the manner in which Jerry had spoken during their meeting, he believed that it would be better to break his promise to her husband than to conceal the information.
Cheryl answered her phone on the second ring, and sounded harried to Dave as she explained that she was just then loading up her car with groceries from the supermarket.
“It’s important that we talk, sooner than later, Cheryl,” said Dave, without explanation.
“Did something happen... to Jerry?”
“No, not quite yet, but yes. May we meet somewhere between my office and your home?”
“How about if I just stay at the market, Dave? There are tables inside, near the exit, and a coffee bar. I’ll finish loading and I’ll see you here in twenty minutes.”
During the wait, Cheryl’s mind raced over thoughts of business troubles at the agency, or perhaps issues that Dave and his wife, Stella, might be having. Only after considering these options did Cheryl arrive at an issue with Jerry’s health. She steeled herself for whatever Dave had to tell her as she returned inside, ordered a coffee, and found a table.
In less than 15 minutes, Dave arrived and joined Cheryl at the table. He saw her seldomly, usually only at the annual office Christmas party, but also occasionally at a golf outing at a club where Dave was a member.
“Thanks for meeting me here, Cheryl,” said Dave, who noted her demeanor and the nearly finished coffee on the table. “But I thought you might find it best if we talk before you return home. Jerry’s probably there now and waiting for you. Are the girls home?”
“No, Dave. Sharon’s got something planned with her boyfriend and Jen has headed out to a movie with a friend. So what’s so urgent?”
“Jerry’s just received the results of his MRI, and the prognosis isn’t good.”
Cheryl snapped back, “He’s got insomnia, Dave. He’s not on his death bed.”
“That’s just it, Cheryl,” Dave answered, being confident that he couldn’t sugar-coat this. “Jerry’s found out that he has inherited a rare, incurable disease named Fatal Familial Insomnia, FFI, and he’s going to die from it... probably within months.”
Cheryl looked at him with incredulity. “Dave? That’s impossible!”
“Unfortunately, it’s not just possible. The disease has no cure, and he’s most likely been showing signs of it for several months.”
Not choosing to appear to understand the prognosis presented, Cheryl looked over toward the large window facing the carts and took a sip of her coffee, wondering to herself if Dave was the one with the problem.
“I know this is hard to believe, but there’s more... the disease had taken Jerry’s grandmother and his mother’s sister, and from what is known at this time, there’s a 50-50 chance of the disease passing along to one or both of your daughters as they reach early middle age.”
Cheryl turned her head slowly toward Dave and refocused on the man’s features as she just began to grasp the implications.
“So, Jerry’s going to die, and my children and their children may all be subjected to his same death sentence?”
“At this point in time, that’s what the doctor said would happen.”
“Has Jerry obtained a second opinion?”
“As far as I know, the disease is so rare that many doctors have no knowledge of it, so, despite a second opinion, the MRI results aren’t lying. What I want to emphasize is that Jerry didn’t have a clue about the disease until his recent scan. Nothing much was known about FFI when he was growing up. According to Jerry, it’s a brain disease that can’t be detected until symptoms occur. In Jerry’s case, his MRI detected a dark patch where his thalamus is located. It’s supposed to show up bright and active on the screen, but it didn’t. The MRI showed it as dark and primarily inactive.”
Cheryl reacted to the news by grabbing Dave’s hand as he continued to speak with emotion.
“Jerry and I spoke at length, and although he seemed rational about his fate, he seems to believe that you’ll hate him for passing the disease to either or both of your daughters, and any children they might have.”
Cheryl turned her head toward the window and the cars, settled herself while slowly bobbing her head in acknowledgment of what Dave had said, and then slowly turned back toward him. “He’s right, you know!” she said in resignation, her mouth straightening to a line after her statement. “At this moment, Dave, I have to say that although I love Jerry, I’m so angry with him I could kill him with my bare hands. So tell me what else you have to tell me.”
Fearful that he, the messenger, was about to be shot, Dave cautiously related the remainder of his conversation with Jerry as Cheryl sipped her coffee and attempted to comprehend the new realities of her life, and the responsibility of letting her daughters know of their chance of being plagued by a disease transmitted down through their father.
Dave pressed on, explaining the concept of a biography or film co-written by Jerry, and also informed her of the insurance policies in place to secure her and her children from financial catastrophe.
“The best news I have is that the technology is, or will soon be, available to silence the gene that is destroying your husband’s brain. I also wanted you to know all of this before Jerry attempts to explain it to you. If you’re angry at him, that’s one thing to deal with, but if you want to save your daughters, you’ll need to work with him to follow him through on the plan to the very end, rather than have him shoot himself in the head, leaving you and the girls without the financial assistance of the insurance policies currently in place.”
“He wouldn’t do that!” exclaimed Cheryl.
“We have no idea of what Jerry will or will not do. But I believe that whatever you’re feeling, he needs to know that you and the girls are there for him throughout this journey. You not only need to be there for him, but also for yourself and your daughters. If you can figure a way to control your rage over his family not informing you about the disease, you’ll have far more of a chance for your family’s future than if you turn the ‘loving and caring’ switch off at this point and try to move forward as if he’s already a burden.”
“I know that, Dave!” Cheryl shouted. “You needn’t lecture me on my responsibilities. I’m glad you’ve told me about the prognosis ahead of me finding it out from Jerry. The toughest part will be explaining it to the girls. They’re a lot more like Jerry than like me. Unfortunately, Jerry’s the glass half-full spouse, while I’m the Debbie Downer—more practical. But I’ll do my best to handle this. So, since Jerry confided in you, Dave, I now need you to walk me through how I go about hearing his confession.”
“Just listen without judgment. And then let him know that you’ll explain it to your girls. That will be a big help for them, as long as you can put your negativity aside. I wouldn’t mention any diagnosis to them at this time. What we’ll all need from Jerry is his commitment to his cause, so he can choose how to use his remaining time wisely. The more supportive we are, the better it will be for you, him, our business, and your kids. You have to trust me on that.”
“I trust you on that, Dave, but I’m not so sure I trust myself. Jerry will know if I’m faking it. Just as I can tell when he’s dishonest with me, although he hasn’t given me much to worry about—until now. At the moment, I’m feeling prepared enough for anything Jerry tells me. You’ve helped with that, and I appreciate your honesty in what I need to do to provide compassion, sincerity, and support. But that’s going to be difficult.”
“You could pray for that,” said Dave.
“Don’t start in on me with that religious bullshit. I’ve got a greater hope for science to find a cure for that fucking disease before my daughters reach forty-something than I do in praying for the intervention by some pretend God.”
“It’s not God that you’d be praying for, Cheryl. You’ll be fine financially as long as Jerry thinks life is worth living despite the hellish pain he’ll endure to pursue a risky plan, at a point when he doesn’t have the strength of willpower to save you all. Once he stops caring, he may choose to find a way to end his life. So, you need a way to prove yourself to Jerry. And that’s why I brought up prayer. Not for him, but for you. Right now, I don’t know if either of you have the strength for this mission. But I’m fairly sure that I do, and I will provide whatever help I can for you and your husband. And that might take some doing, too, on my part.
“Getting back to earlier today: the moment Jerry left my office, I knew that I had to speak with you, a woman I barely know, and offer you some of the worst news you might have in your life. But now that I’ve done it, I can already see that you’ll quickly find your way past all of that. Like Jerry, I don’t know enough about you to gauge how much you love him, but you’re mighty strong, and that’s what he needs most at this point in his life.”
Cheryl responded, “I have no need to defend any feelings I have or don’t have for my husband...or my girls. Jerry’s the one who’s always taken on the fights with the dragons and windmills. And I’ve always been there for him. And I can stand on that. So, I’ll play it your way and see if I can conjure up enough emotion to convince him to follow your plan.”
“That’s a smart move, Cheryl. You know that if you succeed at this, you’d possibly make a good literary agent.”
“Why’s that?”
“A writer needs his or her agent to appear emotionally connected to their project, while in truth, the agent is really only responsible to his or her self and to their publisher. If a book doesn’t sell, the agent doesn’t trouble about the writer’s needs, but only how well the writer’s book will sell, their commission, and that the publisher will continue to trust the agent’s picks. Jerry reads people pretty well,” continued Dave, “and it seems he’s picked a woman to pair with who’s strong enough to take whatever is thrown at her. Right now, he’s anxiety-ridden, and over the next few months, that and his functioning will become far worse as he reaches the end of his journey. So if you want to keep our partnership instead of selling us your half of the insurance money when this is all over, maybe we can strike a deal.”
“I don’t think so, Dave. I think I’d rather have the money. I don’t really like to read, and I have no real head for business.”
------------------------------------------------------
“Come in!” Dave called from under his desk, hunting for a dropped pen. He peeked up from behind the cluttered surface. “Dropped something... Found it! How’d it go with Cheryl yesterday?”
“Better than expected,” Jerry said, sitting down across from his partner. “My paranoia must be setting in. My wife was incredibly calm, even when I brought up the subject of our daughters. It wasn’t like her. She hugged me and told me she’d be there for me. She said there’s a long time before the disease could harm Sharon and Jen, and that a cure might be found by then.”
“Well, that’s great news,” Dave said. “Have you given any thought to the story we were talking about yesterday?”
“I have, Dave. And I think I have just the writer I’d like to work with.”
“Go on.”
“Laura Hillenbrand. She isn’t one of our writers, but she’s well respected. She suffers from Myalgic Encephalomyelitis—it causes severe cognitive and physical exhaustion. It has some overlapping symptoms with what I’m facing, but it isn’t fatal.”
“If I remember properly, she wrote Seabiscuit and Unbroken,” Dave replied.
“Yep. Ever since I read Unbroken, I’ve been amazed by her ability to capture that kind of survival. Louis Zamperini enduring forty-seven days on a raft and years in a prison camp... she understands grit.”
“Unbroken was a massive bestseller, and both became films,” Dave added. “I believe she’s represented by CAA.”
“She is. But I want to see if she’d be willing to co-write this with me. Would you have any problem working with her team or her publisher, Penguin Random House?”
“We work with them on occasion, Jerry. It wouldn’t be an issue. What made you think of her?”
“I was awake last night, as usual. I realized I need someone who truly understands what it means to write through physical limitation. The only issue is timing. I have a year at the most. She’d have to postpone whatever she’s working on.”
“It’s a powerful angle, Jerry. She’s also a prime candidate for a film adaptation.”
“I found her number,” Jerry said. “She lives in Oregon, and I’d like to call her as soon as possible.”
Dave glanced at his watch. “It’s barely dawn on the West Coast. I’d wait a few hours.”
“I have other work to do,” Jerry said. “And you and I still need to talk about restructuring the business.”
“That can wait a few days,” Dave responded. “What won’t wait is finding the right person to take over the projects you’re managing.”
“I’ve already begun doing that, Dave. I can get a lot done since I can’t sleep. But then again, I have to be careful not to fall asleep while I’m driving.”
Slightly before noon, Jerry called Laura’s cell phone and left a concise message describing his disease, his timeline, and his partnership at the Brunhaufer Agency. He concluded by leaving his contact details and a link to his bio on the agency site.
Because he had little control over his sleep patterns, he tried to rest on his office sofa after lunch, taking two Xanax tablets to keep his anxiety at bay. He was awakened from a heavy nap at 2:30 by his phone buzzing.
“Hello?” Jerry said, his voice thick with sleep.
“Hello, Jerry. This is Laura Hillenbrand. I just listened to your message and am incredibly moved by your story. I spent the last hour reading up on FFI.”
Her voice was warm but focused. “I can see why you reached out. There is a strange kinship there. My condition keeps me confined to my house for long stretches, though thankfully it isn’t fatal, and I don’t have children who carry the risk. But I know what it means to fight your own body to get words on a page.”
She paused. “The primary hurdle is that I am deep into another book project, and your timeline requires immediate action.”
“That’s the reality of it, Laura. My time is short. The only legacy I can leave is to jumpstart research into FFI to protect my daughters.”
“I saw in your bio that you’re a partner in a literary agency,” Laura said. “Why look outside your own roster?”
“I needed someone who understands the psychological battle,” Jerry explained. “When I re-read your background last night, I knew you were the only one who could capture the stakes. I asked Dave this morning if he minded me going outside the agency, and he told me to jump at the chance if you were willing.”
“Let me see what I can do to clear my desk,” Laura said, her tone shifting to one of quiet determination. “I’m certain my agent, Tina Bennett, and the team at Random House will see the power in this—especially writing it in realtime. Your involvement in the early stages won’t just help sell a book or a film; it will actually put a public face on a disease people need to know about.”
“That’s exactly what I’m hoping for,” Jerry said. “I’m coming to terms with the end, but not the suffering. This gives me a reason to keep pushing through the fog.”
“I promise I’ll call you back shortly, Jerry,” Laura said. “This is far too important to walk away from.”
-------------------------------------------
Cheryl knew she had passed her test in dealing with her husband’s illness by Jerry’s response to her kindness as she listened to him, expressed sympathy, and asked questions. She accomplished her goal by focusing on his words, without interruption, and was genuinely moved by his honesty and his expression of love for her and their daughters. Jerry tried to hold back tears, mostly because he knew that Cheryl despised weakness in a man—any man, not just him. But each time he choked back sadness, Cheryl took his hand in hers, just as she had done with Dave’s earlier in the day.
Jerry explained that she and the girls would be left financially sound after he died, and laid out the project that he and Dave had created. She listened intently to what she had already learned from Dave, and although she remained angry, she kept reminding herself of Dave’s urging to respond without any negative feedback to the plan.
Cheryl shed some genuine tears when their daughters were mentioned, and she responded to his expression of hope as he spoke of the breakthroughs in science that would likely put an end to the disease in the next decade, protecting Sharon and Jen later in life when they had families of their own.
“I’ll use every ounce of the strength I have until there’s no more to give to provide support and raise awareness of FFI,” said Jerry. “And I’ll need your help with that, so we can help them as a team, as well as thousands of other families threatened by the disease.”
Cheryl knew that Jerry was right, but she merely hoped that he could do enough on his own to “save the world” and himself. Her real motives were totally directed toward the survival of her girls and her hopes for the grandchildren she might never have. If anything else came from a cure, she thought, so much the better. But if and when her girls were saved, that was enough for her. In the meantime, she knew that a great percentage of her time would soon be occupied by becoming a caregiver for her husband—a job to which she knew she was not well suited.
Cheryl’s ambivalence about the male species hearkened back to her father, who had been anything but a good husband to his wife. He had cheated on Cheryl’s mother repeatedly, and had been oblivious to his own aversion to her needs—an attitude he had openly expressed.
Cheryl had been an only child, since sexual intimacy between her parents had ended prior to her birth. Her mother had pleaded for sex but had been ignored, yet could not bring herself to leave her husband because she had never worked at a real job and had little money to survive on her own, besides child support, which would not even cover living expenses.
Though Cheryl despised her father for his neglect, she grew to be more like him in temperament, especially after her mother became ill and Cheryl became a surrogate for the object of her father’s abuse. With nowhere else to turn, she assumed the role of cook, cleaner, and replacement for his wife, and, on occasion, the object of his abuse. By the age of 14, she slept with a large kitchen knife in her bed, just in case he did not have a current girlfriend to satisfy his sexual needs.
After high school, Cheryl applied for a job as a cook at the Llanerch Diner in Havertown, an iconic eating place that later gained fame when used as a setting for the 2012 film Silver Linings Playbook. She lobbied to be a server and soon became a favorite among the patrons, especially the men, who tipped her well because she was cute, shapely, and had a tough but sweet personality that customers liked.
She worked long hours, six days a week, and with the money she earned, she was able to rent a walk-up apartment on the second floor of a vacuum cleaner repair shop located just a block from the diner on West Chester Pike.
Following a few years of living and working in New York City, Jerry Halpern moved back to Pennsylvania with the objective of starting his own literary agency. He rented a bungalow in Havertown that was easy to maintain and offered convenient access to Philadelphia by trolley and subway. He had broken up with his girlfriend in New York and was having difficulty establishing a social network in the area, despite the fact that he had grown up and gone to high school there. The Llanerch Diner was only a few blocks from his house, and he made it a ritual to start his day with breakfast.
It was there he met Cheryl, a girl who was pretty and nice, but was not naturally well suited to his interests or lifestyle. He was bookish, and she enjoyed bowling and watching TV soap operas. But she laughed at his jokes, and he was taken in by the ease she had in handling her customers, as well as her lovely figure and air of self-confidence. He invited her to his house for dinner one Sunday and cooked for her. This became a ritual after he learned how to bowl at the Wynnewood Lanes. Although Cheryl carried emotional scars caused by her father’s abuse, the two began to date.
Jerry was gentle, but Cheryl appeared innocent, distant, and seemed to derive little enjoyment from the sex they shared. But Cheryl liked Jerry, and he was good to her, so she learned how to project enthusiasm and faked satisfaction rather than turn him away or let him down.
After a few months, Cheryl gave up her apartment, moved in with Jerry, and continued to work at the diner as he diligently continued to build his portfolio of authors.
When his business became too difficult for one man to manage alone, Jerry approached Dave Brunhaufer with the idea of merging his client base with Dave’s, and proposed a partnership in his agency. Dave could see his business changing and recognized a need for new energy in his firm, so he took a gamble on Jerry and welcomed him into the Brunhaufer Agency.
Jerry still stopped at the Llanerch Diner for breakfast, Monday through Friday, and was served by Cheryl before continuing down the pike to the 69th Street Terminal to catch the subway to Center City.
Six months after they met, Jerry proposed marriage to Cheryl, presenting a heart-shaped diamond ring to her after kneeling next to the booth in the diner where he was having his breakfast served.
Cheryl and Jerry were married in a magistrate’s office in Upper Darby. Their witnesses were Joan, a friend of Cheryl’s from the diner, and Jerry’s partner, Dave, along with his wife.
Since the wedding later drew significance from the success of the movie Silver Linings Playbook, the couple held a reception for friends and employees at the Llanerch Diner, with champagne poured into water glasses and the diner’s specialty, a “Decadent Chocolate” four-layer cake, for dessert.
Cheryl continued to work for several months before becoming a caring wife who brought her homemaking and cooking skills with her into the couple’s marriage. Cheryl had tried to keep pace with her husband’s intellectual tastes but fell short in patience, longing, and the ability it took to match the refinements Jerry had been taught and nurtured in from his childhood through to adulthood.
When Cheryl learned she was to become a mother, her focus shifted from catering to the needs of Jerry to a devotion to her new daughter, Sharon. By the time Jen came along, Cheryl had leaped into motherhood, desiring only the best for her girls. She also began to morph into the role of a mother who would fit into that very world she had previously expressed no desire to enter.
When it came to luxuries for her girls, Cheryl followed Jerry’s lead, and as the agency became more successful, so did the amenities. This included Cheryl forming social relationships with mothers of children far more educated, worldly, and traveled than she. But just as she had proved herself capable of working the customers at the diner, Cheryl became a master chameleon who assumed the accent and demeanor of the ladies she met—especially those with husbands who were most prominent—and joined in a circle of parents who had ascended from birth to a much higher plane than she.
By the time Sharon and Jen were ages 10 and 8, Cheryl and Jerry had moved into a small but well-appointed home in Villanova, with both daughters enrolled at Agnes Irwin, a K-12 school for girls whose parents could well afford the luxury of a premier private education. Dave’s partnership at the Brunhaufer Agency gave the family a cachet that enabled Cheryl to remain aloof, but accepted, as long as she never said anything stupid.
Over time, Cheryl developed a patter and used her husband’s relationships with well-known literary figures as a mask behind which she could hide her ignorance of anything beyond the names, credentials, and book titles of works they’d written.
Cheryl knew the exact moment when she had become accepted by the most distinguished of the ladies. Until then, she had managed to mimic their tone, facial expressions, and body language. It was at a meeting in which one of the parents asked about diversity, since the tuition had gone up again and she wondered if the rate was influenced by any increase in scholarship students.
The head of school, Sally Keidel, explained that the school operated with a “needs-aware” philosophy and “Net Tuition Revenue,” and that the school aimed for a specific enrollment to keep the school running while using financial aid to fill seats that might otherwise remain empty.
“But where does the money come from?” asked the parent.
“Many places, including our endowment, the annual fund, named scholarships, and PA Tax credit programs.”
Surprisingly, Cheryl raised her hand and was called on by the head of school. Cheryl introduced herself and directed a question to the mother who had asked the initial question.
“Do you have a problem with the fee you’re paying?”
Silence followed after a slight gasp from one of the parents in the room.
“No. But since this is about diversity, I just wanted to make sure that those of us who are paying the full rate are made aware of the methods used in determining the awards.”
“Can you afford to pay the tuition?” asked Cheryl. “Or is your child, or children, in need of financial aid?”
“No! Of course not. I just want to be sure that the money is fairly distributed and that the right kind of students are being admitted.”
“And who might they be?” asked Cheryl.
At that point, Ms. Keidel interjected, “Mrs. McDonald, I would be happy to schedule a private meeting to discuss that topic at a more convenient time. It’s a complicated process that will take time we now don’t have for a discussion.”
The meeting continued with different speakers providing information on class trips, athletic programs, and educational goals over the next five years, including an emphasis on AI studies, the changes in biological sciences, and an expanded program on the study of the U.S. Constitution for the middle grades.
At the end of the meeting, a refined, gray-haired woman dressed in a finely-crafted cardigan and pleated skirt came over to Cheryl and introduced herself.
“Hello, Cheryl. It’s nice to meet you. I just wanted you to know that every year we get a few like her,” she said in a soft voice. “She has no idea about the realities of our world or much of a concept about the mission of our school. To her, privilege is her right. And money is the key to all of it. I appreciate you standing up to her. So often they take over and try to control the meetings. She’s one of the wealthiest. I’ve heard that your husband’s a literary agent?” the woman continued. “My grandfather was an author and a personal friend of Ms. Irwin back when the school was started in Philadelphia. My name’s Sabina Wister, but please, call me Sabina. It’s nice to finally meet you.”
“You say your great-great-grandfather was an author?” asked Cheryl.
“Yes, he’s probably the most notable of us Wisters. He wrote the novel The Virginian back in 1902. They made a TV show out of it in the 1960s.”
“I’m sorry, Ms. Wister. I’m not much of a reader, and I was born in the early 1980s. I’m sure that my husband, Jerry, will know of him.”
“We’ve got a long history in this area,” said Sabina, “and also with this school. It’s good to see a fresh face and hear a new voice standing strong for Agnes Irwin.”
“We’re really new here, but I’m thankful the school stands up for women. That’s why I enrolled my daughters here.”
“And where did you grow up?” asked Sabina.
“Havertown,” answered Cheryl. “So did my husband, Jerry. But he’s the intellectual in the family. I used to wait tables at the Llanerch Diner, but now I’m a mom.”
“We need more of you,” said Sabina, digging into her handbag to find something and coming out with a card. “Let’s get together for lunch, Cheryl. Call me. And if you don’t mind, I’d like to go to the Llanerch Diner. I haven’t been there in an age.”
“You’re on, Sabina! We can also share a piece of their chocolate cake.”
-----------------------------------------
After only two days into the interview, Laura became frustrated by her talks with Jerry. Although she sympathized with the fog that reminded her of her own dullness during her flare-ups, she discovered on that first day that Jerry was having trouble answering the simplest of questions, pausing and then relating stories that had little or nothing to do with his story. The second day yielded even less, except for a list of contacts copied from his iPhone. It became obvious to Laura that Jerry had not been sleeping at all, as he often nodded off in mid-sentence.
When she knocked on the door of the guest house on the third morning, he didn’t answer, so she opened it slowly and found him in a chair gazing through the picture window toward the ocean. When she called his name, Jerry turned toward her and seemed to notice her, but turned back toward the window of gray water as if it were a television screen he couldn’t turn off. Laura came closer to him and tapped him on the shoulder.
In his lap was her book, Unbroken, which he apparently had thumbed through, and he asked a question about Zamperini. “How did you find Louis to write about him?”
“It was purely accidental,” answered Laura. “I stumbled upon him while I was writing my first book, Seabiscuit. His story appears in several articles in old sports pages from the 1930s.”
“Zamperini suffered through a lot, but turned towards evangelicalism after his struggles with alcoholism and anger after returning home. Did he ever tell you how he got over it... the anger and the pain?”
Surprised that Jerry could even speak, let alone read, Laura answered, “Louis was a survivor, Jerry, and a hero. He was extremely motivated, competitive, and had grit. After the war he hated the Japanese and almost lost his wife due to his drinking. He told me that it took a lot for him to heal both from alcohol and anger. It was only after hearing Billy Graham speak about forgiveness, that he decided to give up his life to Christ.
“The Louis I knew was a different man than the one who came home tormented by the cruelties he’d endured. It seemed that his greatest quality was his capacity to adapt to circumstances and survive them, as well as to transform from a man geared towards revenge to one of forgiveness.”
Laura watched him. She hadn’t expected the clarity. She sat forward and continued, “It’s probably why he lived so long. We remained friends and in contact until his death in 2014 at the age of 97.”
“I was thinking about God,” said Jerry. “And how angry I am at my fate, but by not believing in him, I have no one to blame for what’s happening to me. I hate myself for not being there for Cheryl and am angry at Cheryl’s disappointment in me for endangering our daughters. I don’t want to feel this way. I know that she’s trying, but she knows now that she made a big mistake in trusting me.”
Laura recognized the anxiety and paranoia that were working together to further torture a man who could neither sleep nor defend himself against his own agony. As she listened, she also remembered the times she had felt the same way about herself as she watched the man clutching the armrests of his chair, gazing at a landscape that was both beautiful and bleak.
She reached over toward him and touched his face in silence. There was nothing she could say that would calm him, no words of wisdom or consolation. Laura left the living room for the small kitchen attached to it. She put water in a pot and placed it on one of the burners of the stove to make tea. She didn’t know what kind of music Jerry liked, but she put on a CD of John Coltrane and Johnny Hartman and then got a soft pillow from her bedroom and propped it under Jerry’s back.
If it won’t calm him down, it may be calming to me, she thought.
After pouring the water over tea bags in two mugs she grabbed from the cupboard, she carried them along with a few cookies to a table near Jerry, pulled up a chair across from him, and put her hand over one of his. A few minutes later, his hand relaxed and he looked over at Laura. She smiled, and he picked up a cookie and chewed at its edges. He then leaned against the pillow and took a sip of his tea.
He said nothing more, and Laura didn’t interrupt the silence, which lasted until his cup was empty.
“I’ve been gone for a while?” Jerry said, looking over toward Laura.
“And how do you feel now?” Laura asked.
“Tired, but not awful. Thanks for the tea.”
“I wasn’t sure how this was working between us, Jerry, but I’ve decided to assist you with your project. I can rearrange my schedule. It’s far from full, and we’ll talk more about your life when you’re up to it. I should never have made you travel to me, but I didn’t know that your illness had progressed this much, or so quickly.
“Instead of you returning to the Portland airport on Wednesday, I’ll call your partner and have him change your flight ahead to tomorrow. I’ll accompany you and have my driver take us there. It will be more comfortable. We can sit in the back and talk about the things that are important to you, so that I have those words firsthand.”
“Cheryl isn’t expecting me until late Wednesday. The house is easier for her when I’m not in it.”
“Don’t worry about that. I’ll call her and let her know when to expect you. Then she can decide if she can pick you up, or if Dave, or someone else, should do it.”
“I’m sorry I’ve inconvenienced you, Laura.”
“No problem. I’ve been in your shoes, or at least in similar shoes. I’ve inconvenienced many people in my life, but so what?
“Now, do you want to continue to sit where you are, or go to the main house until dinner?”
“I think I’d rather stay here right now. I like the music. Maybe we can talk more a little later?”
“That’s fine with me, Jerry. I have a few calls to make. Would you like more tea?”
“I’d prefer bourbon,” Jerry said, forcing a smile.
“I think I can make that happen. After all, how much worse can it be?”
“But make it a small one.”
While Jerry was sipping his bourbon, Laura contacted Dave and let him know the status of his partner and the revised plan. While doing so, she apologized to Dave for not better assessing Jerry’s health before asking him to travel to Oregon.
“It’s not your fault, Laura. Jerry chose to come, and Cheryl and I both thought it would be good for him.”
“The good news I have is that after seeing him and talking to him about his issues, I’ve decided to make his story a priority, since most of what I’ve been doing is writing essays. I haven’t written a book in more than 15 years, and Jerry’s story, whether it ends up a book or a featured essay, may get him the attention he needs to save his daughters and get me back to what I believe I do best.”
“I’m glad to hear that, Laura. Maybe you should start with an essay, and expand it into a book after Jerry passes.”
“Before I do anything, I have to speak with Tina to find out if she can get Penguin Random House on board.”
“Wait a minute, Laura!” Dave interjected a bit strongly. “Jerry’s a partner in our firm. Tina’s going to have to make some concessions. This is our story, not Tina’s.”
“That’s true, Dave, but you know that you need me to write it. I’ll be the draw for the publishing house, and I’m the one who can best bring the story to the screen.
“I can certainly see your point that Tina and the Creative Artists Agency might need to partner with your firm on the project. I’m sure you and Tina can work that out. The loose cannon in this is me. I’m feeling fine now, but my pace is slow, and it may take some time for me to craft the story as I did for both of my previous books.”
“What about doing just an essay?” asked Dave.
“What Jerry needs is for the medical community to take on the FFI disease before it threatens his kids. My job would be to craft the story to my standards. That’s the only way Penguin will buy it. The wild cards are: will I be capable of completing the story while still having my own health issues, and will Jerry be able to communicate with me so that I can draft a story that captivates the public. For all we know, the story may eventually be about his daughters rather than him. From what I gather, Jerry’s girls have no idea of his issues, and no knowledge yet that they might face a future like his, if science doesn’t find a cure for FFI in the next two decades.
“That race against time is what makes the story so emotionally enthralling. We’ll both be working in real time to help make the outcome a good one 20 years from now, and neither of us will be alive to see it.”
“Let’s see if Tina can work with us. How long might it take for you to write a draft?”
“I have no idea. But once the story’s been outlined, Jerry may have two co-writers instead of one under the title on the cover.
“The real reason for my call is to let you know that Jerry will be arriving home a day early and will need a ride home from the airport when his plane arrives.”
“I’ll pick him up,” said Dave. “Cheryl will have her hands full once he’s home. The agency will make the arrangements from our end. I’ll call back with the schedule.”
“My assistant is about to start dinner and Jerry’s finishing his bourbon...”
“Bourbon!” shouted Dave.
“So, it’s going to kill him, Dave?” answered Laura sarcastically. “I can see him from the kitchen now. He looks happier than he’s looked at any time since he arrived.
“Leave it be, Dave. He’s the walking dead, and what he needs most is someone to care enough for him to break the rules. Nothing’s going to save him. So if he wants another, I’ll be glad to offer him one.
“I’ll talk to Tina tomorrow, and we’ll see what ideas she has for marketing the project.
“Just let me know what flight you’ve scheduled and I’ll have him there.”
“Cheryl will have her hands full. I’ll be waiting at the gate,” said Dave.
----------------------------------
Laura called Dave the next day from the Portland airport to let him know that her driver had just assisted Jerry in the check-in process and had directed him toward the proper gate. She also confirmed his departure time and provided Dave with the posted arrival time in Philadelphia.
Dave, however, had forgotten to alert Cheryl of the change of plans, so she had no idea her husband would be arriving back a day earlier than expected. Dave only realized it as he was driving back to Jerry’s house, and so he left a message for Cheryl on her phone.
Jerry had left with only a carry-on bag and did not need to pick up luggage at the carousel. Dave parked in the waiting area and watched the board for the announcement of the plane’s arrival. Once assured of its landing, he moved his car to the terminal and parked near the curb with his parking lights flashing. He checked his watch. Fifteen minutes later, Dave caught sight of someone quite disheveled, pacing back and forth outside the exit, approaching people randomly.
Dave pulled his car up toward the man and confirmed that it was, in fact, Jerry. He got out of his car, stowed his partner’s bag in the trunk, and then opened the passenger side door, and Jerry got in.
The man sitting next to him seemed little like the man who had left for Oregon less than three days prior. Though Jerry had shown signs of exhaustion for days, he had been rational, functional, and aware of his mission. The man who had just arrived was frightened and befuddled. Dave called Laura to let her know that Jerry had arrived and asked how he had been before he got on the plane.
“We had a rather good discussion on the trip to Portland. He seemed lucid the whole time. How is he now?”
“Not well. Sweating and non-verbal.”
“I should have never asked him to come out here,” said Laura. “I didn’t have any idea the disease had progressed this much.”
“I didn’t know that either, and I can’t seem to get in touch with Cheryl. I’ll be dropping him off in less than a half hour. Did you get enough from Jerry to create a story?” asked Dave.
“I’ll need a lot more information from others, but I, at least, have a sense of the man and his background.”
“We’ll talk later. I’ve got to get him home,” said Dave as he ended the conversation.
Dave pulled up near the entrance to Jerry’s home. There were several cars lining the curb and music was blasting from the house. Dave exited the car and approached the passenger side, and that was when he heard glass break, followed by some laughter and shouts.
He helped Jerry out of the door and walked him to the porch, where he saw his partner’s daughter, Sharon, through the window. He knocked loudly, and she opened it. She looked like her mother, only younger and frightened.
Sharon looked past Dave and saw her father. “Gees, Dad! You weren’t due until tomorrow.”
She then tried to hush the room, but the music stayed loud.
“I have to get your Dad in bed,” said Dave. “Where’s Cheryl?”
“She’s out, but said I could have friends over.”
“I heard a glass break,” Dave said as he looked around at more than a dozen teens, most with plastic cups containing beer from the empties left on tabletops.
“Oh, the glass. We had an accident.” Sharon looked past Dave at her father. “Is he drunk?”
“No, Sharon. He’s sick. Get someone to help me get him upstairs.”
She asked two big guys to come over. Each took a side of Jerry, and they walked him up the stairs.
“It’s the last bedroom on the right,” said Sharon before she turned back and examined her father. “Sick?” Sharon repeated back to Dave.
“Haven’t you noticed that your father’s been ill? Has your mother told you nothing?”
“Mom said that Dad’s been under a lot of stress lately at work. We haven’t seen much of him. He’s usually out of here before we get up, and we’ve got sports after school.”
“Is Jen around?” Dave asked.
She turned again and called, “Jen, it’s Mr. Brunhaufer. He wants to talk to you.”
Jen was almost 14, and obviously shorter than her sister. She was dressed more conservatively than Sharon, since her figure had not yet filled out.
“Dad?” she said, seeing her father being walked up the stairs. Jerry was unresponsive.
“I tried to call your mother,” Dave called out loudly as he assisted Jerry to the bedroom, “but she doesn’t answer.”
“She went out for a while,” answered Jen. “She didn’t say when she’ll be back.”
“I think you’d better end the party, girls. Your father will need any rest he can get. Does your mother know about this?” Dave gestured at the teens with the beer, most of whom remained oblivious to Jerry being carried to his bed.
“She just said to keep the noise down.”
“And the beer?”
“A couple of the guys brought it. We don’t drink, either of us.”
“This is a school night, isn’t it?” asked Dave.
“Not really. We’re off tomorrow because of some teacher’s conference.”
“And what about the boys? You go to a girls-only school, right?”
“We all have good grades, and none of us have gotten into any trouble.”
“I didn’t question that. Just end the party, and I’ll stay around until your mother gets home.”
“Okay. So what’s the real scoop on Dad?” asked Sharon.
“He’s very ill, girls. And he’s apparently been sick for some time. Up until now, he has had good days and bad ones... but now, it seems they’re mostly bad.”
“Is there anything we can do to help him?” asked Jen.
“Yes. Refrain from loud parties in the house, and be nice to him.”
“We didn’t know he was coming home today.”
That’s my fault, thought Dave. “Just clean up the house and get rid of the kids. Let’s start there.”
Dave grabbed his phone from his pocket and called his wife. “I don’t know when I’ll be home tonight. I’m at Jerry’s now, and I’ll be here until Cheryl gets home.”
The two girls seemed to return to their real selves and ages as they asked their friends to leave. The two boys who had carried Jerry up the stairs came down, and one asked Dave what was wrong with Sharon’s father. “He just keeps staring out into space. He doesn’t even blink.”
Dave did not mince his words, despite what Cheryl might not have wanted the girls to know about their father’s illness. “He’s very, very sick. And though he may seem better tomorrow, he probably won’t get better.”
“Is Dad going to die?” Jen’s voice was small.
“Yes,” Dave said without hesitation, pissed that he had to relate this information. “There’s no cure. Haven’t you noticed?”
“We hardly see him anymore,” said Sharon. “Mom said he was stressed. We’ve been busy. We never thought to ask.”
“Clean up the house,” Dave said. “Get rid of the kids. Start there.”
As Sharon and Dave gathered up trash, Sharon asked, “How long has Dad been sick?”
“Nobody’s sure, but he hasn’t been sleeping well since before you all went to the shore—possibly three or four months. He didn’t know how sick he was until recently.”
“Why didn’t our parents let us know?” asked Sharon.
“I think your parents just wanted you to live your life and not have to worry about them.”
“But we’re old enough to know. At least I am.”
“I’ll let your mother answer that question when she comes home.”
“Will you tell Mom about the party?” Sharon asked.
“I’m not sure. There are more serious things to discuss, and she should be the one to tell you, not me.”
Jen ran back down the stairs and said that their father might be sleeping with his eyes open, but Sharon interrupted her. “I’m sorry, Mr. Brunhaufer, for the party and everything. We thought Dad was going through something like men do in their forties when they chase girls or buy fast cars. Mom’s been strange too, but Jen and I just thought it was her onset of menopause. Isn’t that right, Jen?”
Jen was sobbing, but nodded.
“When your mother gets home, we’ll talk more about this. Do you have any idea where she might be?”
“My best bet would be with Mrs. Wister, her friend she’s made at our school. She doesn’t say much about her, but I’ve heard Mom mention her name, Sabina, when they talk on the phone. Mom’s been stressed too, but I guess she should be if she’s worried about Dad.”
“Since you girls and I haven’t been in touch lately, how are things going at school?” asked Dave.
“Fine,” said Sharon. “I’ll be a senior next year and am looking at colleges... or, I was until recently. I play lacrosse and basketball. And I have a lot of friends.”
“I don’t have many friends,” said Jen, still sniffling. “At least in my class, but I like hanging out with Sharon and her friends.”
At this point, Dave heard a car pull up and looked out the window. “That must be your mother.”
“Please don’t tell her about the party. Just say you’ve brought Dad home early.”
---------------------------------------------
A Literary Ending - Chapter Ten - The Weight of the TruthIt 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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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.
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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 knowing that he did everything possible to save all of you. It’s his only priority, and his reason to struggle through every day. If it doesn’t work out the way he hopes, Jerry will never know the outcome. But at least he’s done everything possible to alter the future.”
“Change the future?” asked Cheryl.
“Everything Jerry continues to do until his death will change the world a little or a lot,” said Sabina. “I believe that with all my heart. If it doesn’t change the world quite the way he hopes it will, his mission is sure to affect a positive change for others—those not yet born or who have contracted a disease similar to Jerry’s.”
Cheryl heard the front door close downstairs, and she told Sabina that she’had to go. “Thanks for the wisdom,” she said before ending the call.
From her place on the mezzanine, she saw Sharon downstairs by the door, dressed in her school uniform and removing her backpack. She didn’t look angry, so Cheryl guardedly descended the stairs to the hallway.
After she reached the bottom, Sharon tested a sympathetic smile. “Can we talk, Mom?”
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“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 asked. The truth was that Sharon had dated and experimented, but had never engaged in more than what was commonly known as “heavy petting”.
“Many of the girls at school are on the pill, and have been taking it since they were Jen’s age,” said Sharon. “And I’ve learned how to tease boys like you did with your customers.”
But even without the weight of abuse that her mother had carried with her, Sharon steered clear of aggressive boys, often befriending gay ones who had no sexual desire for females.
This awakening provided Sharon with the opportunity to catch her mother up the limits of her own sexual experiences.
“I don’t dislike boys,” she revealed, “and I’m not a lesbian. But I don’t appreciate boys pawing at me or trying to catch peeks down my blouse. I know that it’s normal for them to do it, but it bothers me when they pretend to be nice to me for favors.
“Dad’s one of the good men in the world,” Sharon continued. “Although I know he’s looked at other women, I also know that he always treats them with respect. It really hurts me that he’s sick and is going to die, when he has so much love in his heart for all of us.”
At this point Sharon broke out in tears and Cheryl hugged her daughter to her. She realized at that moment that she not only doubted the motives of her husband and other men, but also those of her own girls.
Cheryl broke the silence and said to Sharon, “See if you can find out where you can get a test, and then we’ll tell Jen about the disease and adopt a plan moving forward.”
Sharon shook her head “yes” with tears still in her eyes and thanked her mother with another hug.
“It’s I who am sorry,” said Cheryl. “I guess I haven’t been approachable most of your life.”
Sharon laughed through the last of her tears. “You were when we were little, but you’ve been quite a challenge as we’ve been growing up. Your hopes for us have rarely matched our own, which, I admit, have been kind of lame.”
Cheryl smiled and said. “I don’t know if I’ll ever change enough to be like my friend Mrs. Wister.”
“I’m glad you’ve found her, Mom,” said Sharon. “Although Jen and I have wondered if you are a closeted lesbian.”
At that comment, Cheryl laughed out loud. “I do not want to have sex with women. Or I don’t think I do. But certainly not with Sabina. She’s more like the older sister I never had.”
Sharon answered, “If you decide you are a lesbian, just know that we understand, and that we both believe that there’s nothing wrong with that.”
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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!”
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Gerald M.Halpern, 49,
Philadelphia Literary. Agent and Author’s Advocate
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
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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. With Tabana in place, the $1 million insurance premium and a possible windfall from Laura’s book, he began shifting his priorities to self-preservation rather than to the continuity of his business.
But as often happens when a boss begins to desert his or her post, other agents began to jump ship, and after nine months, with A Literary Ending far from being complete and no new bids for his agency, Dave was coming close to closing the physical doors of Brunhaufer, while trying to sustain his failing agency with the deal he’d already struck with Tina, and serving his existing clients by bringing in one temporary new agent, Tabana.
In the fall of 2027, Jerry’s daughter Sharon, matriculated into William & Mary in Williamsburg, a college offering premier programs in pre-med, science, and the liberal arts. During her senior year, she’d become a serious student and had taken on new responsibilities for her family as well as developed guidelines for her own future. She’d broken up with her sometime boyfriend and was using her free time to explore pathways to cures for prion diseases, most specifically FFI.
Although applying late to colleges, the letter that accompanied her application to William & Mary short-listed Sharon for acceptance. It included a brief summary of her father’s disease and death, and her wish to be personally involved in finding a cure for the genetic diseases that threatened the lives of the children of those afflicted, such as her own younger sister, Jen.
During the previous year, Sharon had become an avid reader, a practice spurred on by her interest in the books of authors managed by her father. Although she had no interest in Jerry’s business prior to his illness, she had questioned her father about his job while he was in one of his clearer moments. In response, he had pointed to a shelf at the top of the bookcase in the living room that contained the books he was most proud of.
“All of those up there were first novels and, although not always among the writer’s best books, they enabled each to become a well-respected author. I’m most proud of my contribution to those early works. Without their publication, the writers might never have continued writing.”
Sharon took down the first book on the shelf, and by the year’s end had read them all, guessing the possible phrases in each for which her father might have contributed guidance.
In September, Jen began her junior year at Agnes Irwin and, due to the spread of the information about the disease she carried in her and the optimistic attitude she exhibited, she became an unlikely poster child for positivity. She joined the lacrosse team as an attacker, took on the role of spokesperson for people overcoming adversity, formed a penpal relationship with Laura Hillenbrand and, after reading the author’s second book, adopted the word Unbroken as her sobriquet, having the moniker printed on a dozen sweatshirts, one of which she wore daily during practice and often over her uniform in class.
Thanks to Jerry’s desire to financially protect his family from himself, when he died, Cheryl found herself modestly well-off, with $2 million in benefits she received from the two insurance policies. The “life rights” payments, profit sharing, and consulting fees immediately yielded an additional $120,000 from Penguin Random House. The translation and film rights of A Literary Ending would ultimately provide additional income for Cheryl and the girls over the next few years; so much, in fact, that the family might possibly end up wealthier from Jerry’s death than he would have earned from a lifetime of self-sacrifice and hard work.
On hearing of her good fortune from Dave and Tina, Cheryl felt even worse about the masquerade she’d staged nearly her entire married life, and turned to Sabina Wister for consolation.
During one of her reflective moments, Cheryl called Sabina and poured out her guilt. “I have no doubts that I failed Jerry in every way possible. He was nothing like my father, but I attached my father’s guile and meanness to my husband without cause. And then I foolishly and internally blamed Jerry for the DNA he’d inherited and passed on. He was always looking out for us, and he forgave me my impervious heart as he granted me my every wish. I should have...”
“You’ve told me your story many times, Cheryl. And if I can remind you, I’ve kept saying that you should carry none of this burden on yourself. You literally got screwed over by your father, and then you lucked out and were well-cared-for by your husband. Hopefully, Jen will remain “unbroken” and both she and Sharon will prosper on their own and find husbands similar to their father, rather than men like your father or any of the ignorant and entitled fools out looking for wives to abuse or torture.
“There are few men in my family who’ve done anything much with their lives except for my great-great-grandfather, Owen. The women in our family seemed to have had fortitude back in the day. I had three aunts—sisters, and all who remained Wisters: Mary Channing, Frances Anne, and Ella Eustis, who during the 1920s and 1930s helped make Philadelphia what it is today. Mary petitioned for music in public schools, public parks, and the subway system. Frances was a founder of the Philadelphia Orchestra and a patron saint of preservation, rescuing Society Hill and Old City from modernization. And Ella became the public face and voice of the Philadelphia Electric Company during the Great Depression and beyond.
There was a moment of silence on the line before Sabina said, “It’s no wonder we’ve held on to the Wister name. It’s our statement that we’ve never lost our power to our men. Because of Jerry, you can celebrate the Halpern name, or perhaps your own. You may also age enough to watch your girls grow strong enough to defy defeat.”
Nearly too softly for Cheryl to hear, Sabrina said, “I almost envy you, my dear, in that you have risen from a life of poverty and abuse to be a woman of good standing, and soon, will become one of note, if not notoriety.”
Another pause before loudly exclaiming, “My God, Cheryl, your Sharon has already aged past the bumpy road of teenage frivolity to become a serious student of note at William & Mary.
“And Jen? Whatever happens later in her life, she’s already proven to be ‘Unbroken.’ I’m sure Ms. Hillenbrand will be watching and record all of their accomplishments, as well as yours, in that book of hers.
“Jerry’s given you a chance to become a woman, not of wealth, but of worth. And your daughters may have struggles ahead, but they’ll have the resolve and resources to meet whatever challenges they may face, perhaps even by creating their own dynasty of Amazons.
“So don’t brood over spilled milk; it’s beneath you.
“Now you can pick up the pieces of that Raggedy Ann doll you consider yourself to be and prove your worth even more than you’ve already begun to do.”
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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 needed of her genetics stored and used for the testing of thousands of experimental drugs without ever putting her at risk.
Dr. Cleric also informed her that they had already begun trials for antisense oligonucleotide (ASO) therapy, a program where Jen might choose to serve—somewhat like a lab rat—for the researchers to find out if they could silence her mutant PRNP gene and stop the production of the bad protein, thus delaying the onset of FFI indefinitely.
“This would, of course, be her choice,” informed the doctor. “But if she signs up, she could be instrumental in saving scores of people with FFI and thousands of others with known prion diseases.”
“I’ll let her know, Dr. Cleric,” said Sharon. “As you say, it’s her decision to make, and I don’t know whether she’ll want to devote whatever life she has ahead of her to such a speculative endeavor.”
“I understand,” said Dr. Cleric. “We’d make every effort to help her respect that balance.”
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A Literary Ending - Chapter Eighteen - An Epilogue
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 early death.
The report confirmed, however, that the silent mutation could still be passed on to offspring. To end the cycle completely, Jen agreed to have her embryos harvested, genetically modified to remove the mutation, and replaced using only healthy embryos. What made this historic procedure legal and accessible for families carrying lethal traits was a pivotal piece of legislation passed by Congress in 2028: the Genetic Heritage Protection Act. This law carefully distinguished the controversial “enhancement” or “replacement” of normal genes—such as those intended to make a child taller, brighter, or more athletic—from a strictly therapeutic “prevention intervention” designed to save a child from a lethal inherited mutation.
Because Sharon Halpern was an integral part of the team that engineered the fix, her sister Jen was the very first person to undergo the procedure, and their father, Jerry, was the true inspiration for the discovery, Fatal Familial Insomnia (FFI) became known universally as Halpern’s disease, in much the same way Amyotrophic Lateral Sclerosis (ALS) became commonly referred to as Lou Gehrig’s disease.
At the age of 35, Jen married Ned Pew, a financial advisor turned auto mechanic, who had been introduced to her years earlier by Sabina Wister. Within a few years, Jen became the proud mother of two healthy boys. Both sons tested completely negative for the mutated gene that caused Halpern’s Disease.
A subtle irony, noted years later by Sabina over a celebratory lunch, was that despite the time-honored pedigree of the Pew name on the Philadelphia Main Line, the boys legally took their mother’s maiden name. As the sisters grew into adulthood, “Halpern” became the far more dominant, revered name in the prestigious fields of science, literature, medicine, and global philanthropy.
The End
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Acknowledgements:
I’d like to thank my editors, Manfred Roesler and Bruce MacKenzie, for their advice and edits on this work. Their guidance has been central to the structure, clarity, and continuity of this and many other of my writings—a gift for which I am eternally grateful.
– George H. Rothacker
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