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A middle-aged couple struggles with the husband's descent into early-onset Lewy Body dementia in this profound and deeply moving novel shot through with Kirshenbaum's lacerating humor.
It begins with hallucinations. From their living room window, Leo sees a man on stilts, an acting troupe, a pair of swans paddling on the street. Initially, Leo believes the visions are related to visual impairment—they are something he and his wife, Addie, can joke about. Then, he starts to experience occasional, but fleeting, oddities that mimic myriad brain disorders: aphasia, the inability to perform simple tasks, Capgras Syndrome, audial hallucinations he believes to be real. The doctors have no answers. Leo, a scientist, and Addie, a collage artist, had a loving and happy marriage. But as his periods of lucidity become rarer, Addie finds herself less and less able to cope.
Eventually, Leo is diagnosed with Lewy Body disease. Life expectancy ranges from 3 to 20 years. A decidedly uncharacteristic act of violence makes it clear that he cannot come home. He moves first to an assisted living facility and then to a small apartment with a caretaker where, over time, he descends into full cognitive decline. Addie's agony, anger, and guilt result in self-imposed isolation, which mirrors Leo's diminished life. And so for years, all she can do is watch him die—too soon, and yet not soon enough.
Kirshenbaum captures the couple's final years, months, and days in short scenes that burn with despair, humor, and rage, tracking the brutal destruction of the disease, as well the moments of love and beauty that still exist for them amid the larger tides of loss.
Tonight or Tomorrow
You sit at the edge of the bed watching your husband who looks as if he were sleeping.
Hooked up to a high-flow oxygen tank, he might be sleeping, but mostly he is dying. A high-flow oxygen tank is not a ventilator. When the subject of things such as ventilators would come up, apropos of nothing other than stories on the news, stories of lawsuits and family battles, Leo invariably said, "No matter what. No artificial means of life support for me."
You have the document: Do Not Resuscitate and No Artificial Means of Life Support.
You, on the other hand, said, "I want to be freeze-dried. Or maybe one of those long-term induced comas."
The oxygen will not prolong his life, but it eases the pain of breathing.
The pain of breathing.
The oxygen eases the pain.
For him, the oxygen eases the pain.
But to ease the pain does not mean there is no pain.
For you, there is pain.
The hospice nurse says that if he shows indications of suffering, if he winces or groans or, because not all suffering is externalized, even if you just sense that he might be uncomfortable, you can give him morphine.
Not all suffering is externalized.
You eyeball the vial of morphine tablets.
The hospice nurse tells you that he will, most likely, die tonight. Tonight, or possibly tomorrow.
The hospice nurse leaves. She has other dying people to visit.
You take your husband's hand. You lean over, stroke his cheek, run your fingers through his hair. Such hair. Full. Thick. Boyish, the way it flops over his forehead, but not boyish because it's white. Eighteen years ago, soon after his fortieth birthday, his hair started going white. Within nine months, it was all white. Prematurely white. "It's you," he teased. "Living with you turned my hair white."
White hair, disease, death, all of it premature.
Now, you say, "I'm sorry that I wasn't always good to you. But more than anyone, anything, ever, I loved you. Do you know that I loved you?" Loved. Past tense. He's not yet dead, and already, you are in the in past tense.
Tonight, or possibly tomorrow.
Hurry up, not all suffering is externalized, please hurry up.
Because, for you, there is pain.
Do You See What I See?
Leo is at the living room window, the curtain pulled to one side, and he's peering out, like the nosy neighbor trolling for dogs peeing on flower beds or clandestine affairs, or—the snoop's jackpot—some perv peeking into a woman's bedroom. Except Leo is the opposite of a snoop. Insofar as the private lives of other people are concerned, he's pretty much a So what? kind of guy. But, as of late, every night he's posted himself there at the window. "Come here for second," he says.
Across the street, cars are parked bumper-to-bumper, and a sleek bicycle is chained to the streetlamp on the sidewalk in front of the red brick townhouse that's been there since 1902. Come late April or early May, tulips and daffodils will sprout and bloom from the patches of dirt that ring the trees, but it's neither late April nor early May. It's mid-February. When summer rolls around, the full view of the townhouse will be eclipsed by the foliage of the silver maples.
"What, who, is it now?" you ask.
"Under the light," Leo says. "You don't see Gandhi?"
"Gandhi?"
Leo sees Mahatma Gandhi stirring lentils in a pot. An iron pot that hangs from a tripod.
You don't see Gandhi. "Is he wearing anything more than a dhoti? If that's all he has on, he must be freezing. You might want to bring him a coat."
Because Leo realizes perfectly well that he is hallucinating, that Gandhi is not out there on the sidewalk stirring lentils in a pot, you feel free to add, "You might want to give him a pair of thick socks, too. I'm assuming he's barefoot."
Leo lets the curtain fall, and, not for the first time over the last couple of months, he says, "I should give Sam a call."
Sam is his ophthalmologist, and the way Thanksgiving happens not on a fixed date but firmly on the fourth Thursday in ...
Excerpted from Counting Backwards by Binnie Kirshenbaum. Copyright © 2025 by Binnie Kirshenbaum. Excerpted by permission of Soho Press. All rights reserved. No part of this excerpt may be reproduced or reprinted without permission in writing from the publisher.
Counting Backwards should be a sad story of neurological decline, but instead, author Binnie Kirshenbaum uses wit to further the conversation around illness and marriage. Addie is a collage artist married to Leo, a physician who has hallucinations. He sees Ghandi, for instance, stirring lentils. And a man walking on stilts. Aware he is seeing what cannot be there, Leo self-diagnoses and thinks he is suffering from Charles Bonnet Syndrome, in which visual hallucinations result from the brain's reaction to low vision. Leo's vision has always been crappy. Perhaps his brain is punishing his eyes. However, a trip to an ophthalmologist confirms this isn't the root of his hallucinations.
And so, the mystery begins. What is wrong with Leo?
Kirshenbaum brings a riveting story to life with a nightmare scenario. The beginning of the book reveals that Leo is now in hospice and Addie is his caregiver. A few pages later, the before-hospice story begins with Leo's hallucinations. Kirshenbaum's manipulation of time works as context. Her storytelling chops are evident. She has the unique ability to pair sarcasm and an occasional one-liner to deliver a marriage narrative that feels contemporary and very real. This makes Counting Backwards a truly special novel and Kirshenbaum its star.
The story is told from Addie's point of view. Frantic and needing to solve the riddle of Leo's
hallucinations, she finds comfort in her friends. Shelia owns the art gallery where Addie's
collages are displayed and sold; she continually pushes Addie to meet her deadlines. Addie's
best friend is Zachary; she calls him Z. Z believes his children are Einstein-level brilliant and
Addie has to bite her sarcastic tongue. Judy moved out of the city and has an opinion
on what is wrong with Leo. She thinks he has probably ingested a boatload of toxins.
Shelia, Z, and Judy represent a diverse group and are a comic diversion from the story's weight: beautiful Leo is unwell and nothing makes sense.
Leo's CAT scan is normal. He is then scheduled for an MRI and Addie wonders, "Why don't they call an MRI a DOG? Keep to the theme. CAT. PET. DOG." This amuses Leo, but because we didn't know Leo before he started hallucinating, it is hard to pinpoint if his amusement at Addie is, well, because she's Addie, or if it's his condition. While Addie is fretting, Leo is aware something is terribly wrong. Alzheimer's is a nascent fear, and he is desperate to rule it out. He wants Addie to take all his identification and put him on the R train, with the idea being that if he returns, he doesn't have Alzheimer's. Addie refuses. One of the most painful passages is when Leo insists Addie isn't his wife. He says, "You are not my wife. You look like my wife, but you are not my wife," and as if to confirm this for a fact, he says, "My wife is prettier than you."
In another passage, he goes to the house where he grew up. When the homeowner answers the door, Leo tells him, "You're not my father," before being escorted away by the local police.
Addie is in full-blown grief for what she is losing day after day. She is taking Xanax. She phones
a suicide hotline, not because she wants to kill herself, but because she needs to vent her frustration about the medical system, which can't seem to diagnose what is wrong with Leo. Addie has changed over months, no longer terrified when Leo puts on his thick winter coat in the middle of summer and leaves the house at 3 a.m. Now she hopes he runs into danger and succumbs to it because she is exhausted and at her wits' end. It makes her fantasize the worst. "You want the crazed meth head to shoot him; you want him to be the victim, DOA, of a hit-and-run; you want him to drown and accidental death in the Hudson River."
Marcy, a mental health consultant, is pretty sure Leo has Lewy Body disease (which the comic
Robin Williams also had and may have led to his death by suicide) and the knowing gives Addie a calmness. Perhaps predictably, when others who care about Leo suddenly discover he has been keeping a secret for two years, his deteriorating brain in the grips of this terrible disease, they are stunned and incredulous because, to their way of thinking, Leo is the smartest man they know. As if dementia-related illnesses hopscotch over intellectually gifted brains. Desperate to find a placement for Leo because she can no longer manage the stubbornness, delusions, and apathy that are part of Lewy dementia, Addie calls care homes in Boston, New
Jersey, and New York. The farther away the better; it speaks to her exhaustion and acceptance of the new normal. She cannot fix this. It will not magically disintegrate. After twenty-four years of a smart, engaging, funny, scientific husband, Leo is a new invention. She doesn't recognize him, and worse, she cannot help him.
I have long resented how dementia is referred to as the long goodbye: it is not goodbye. It is
treading water. It is surviving daily grief and violence and cruelty. It is years and years of
dissonance, and months of forgetfulness. It is the injustice of stolen goods. A thief rooting
around someone's brain and then, poof, the mind is gone but the body is still plodding along
haphazardly.
The poet Rumi once wrote, "You are not a drop in the ocean, you are the ocean in a drop." But
tell that to a caregiver whose lover has a deteriorating brain and doesn't recognize his life and
has delusions. Even for an artist like Addie, who carefully selects the pieces to use in her
collages, her humor, creativity, and wit cannot save Leo or their marriage. And therein is the
point of Counting Backwards, which is a contemporary document of the mentally unwell, a beautiful, terrible story of erasure. I shouldn't find it so remarkable given my personal
history of loving someone with dementia, but I do.
It's the wit. It's the fact that the author doesn't overwrite her characters. It's the valorization of
friends and how necessary they are in our lives. It's how the characters are amorphous cultural
figures with a lot of money. White people, yes, but this disease can and does happen to everyone; skin color is irrelevant.
Counting Backwards doesn't pretend to know everything about dementia and the passages about the worst of the illness aren't heartbreaking nor are they emotionally raw. What it succeeds in showcasing is a committed marriage and the veneers that marriage shows the public.
Kirshenbaum knows how to engage an audience with subject matter many of us are sadly familiar with, and yet we are not left nostalgic or feeling as if we have just read something tragic we have already experienced in real life. The characters oxygenate a personal story of sickness and survivorship, and they are the novel's pulse and grace. That is what makes Counting Backwards seem so heartfelt.
Reviewed by Valerie Morales
While planning her wedding at the age of twenty-four, after seven years of dating her fiancé, Erin Fortin was diagnosed with a rare blood disorder. Paroxysmal Nocturnal Hemoglobinuria, or PNH, involves the damage of red blood cells by the immune system. Because Erin and her future husband John both had a healthy sense of humor and loved to laugh, they tried to look at the bright side. "[O]nce we'd accepted my condition, we laughed about how we'd vowed 'in sickness and in health' before even getting to the altar."
In a blog on the website PNH News, Erin talks about what has helped over the six years of her marriage and laid out three concepts she and John prioritized. The first thing her soon-to-be husband did, along with her mother, was to research PNH. What was it exactly? How was it going to mature in her body long-term? What were the symptoms? John told her to "focus on feeling better, and I'll handle the research." The second thing they did was create one-word codes for when Erin was struggling to communicate how she was feeling inside her body. "Spoons" meant she didn't have energy. "Banana" was so they could lighten up and have a laugh. Lastly, they had to expand the idea of 50-50 teamwork, because sometimes Erin couldn't contribute to the relationship the way she wanted to and John had to do a little more, including after their first child arrived. Together, they have found a way to keep their marriage intact. It may have helped that they learned to deal with illness while newly married.
But illness in many marriages proves to be a heavier burden. For instance, Italian social scientists tracked 25,000 heterosexual couples in a longitudinal study that lasted 18 years, and discovered illness can sometimes be too much for a marriage to endure, particularly when the wife is in poor health. Of the 50-64 age cohort, when the wife was ill and the husband was not, the marriage was more likely to crumble than when both were in good health. When the husband was ill, like in the novel Counting Backwards (where husband Leo suffers from Lewy Body dementia), the marriage was just as likely to stay intact as if they were both in good health. For couples in which one or both partners were 65 or older, depression was more of a factor than physical health, but followed a similar pattern. Scientists discovered that a wife's depression was more often a factor in a marriage ending, while a husband's depression had little impact on the marriage's survivability.
Like most wives of sick husbands, Addie's job becomes saving Leo. She shepherds him to doctor after doctor, even after being told she is overreacting. She keeps a journal of symptoms as a reminder that what she sees in Leo is really happening. She even lies. She makes an appointment with a neurologist but tells Leo, who is now avoiding doctors, that he made it months earlier but forgot. After Leo begins exhibiting dementia symptoms and the life they once enjoyed has suddenly changed, Addie is lonely and depressed. In a conversation with herself, she says, "Face it. You are lonely, and worst of all is when Leo is with you. He's there but not there. Not Leo." She keeps remembering how they loved going out to restaurants with friends, but once he was ill they began to stay at home. Sometimes Leo is paranoid and violent. Sometimes all he wants to do is be by himself. She notes the change in her journal: "Refused to go for dinner with Miriam and Patrick Tore two pages from a book, threw them in garbage Bought dog biscuits for cat, then asked why I bought dog biscuits for cat."
"You have to rewrite the relationship's expectations. And the longer you've been married, the harder that is to do," says Zachary White, a professor who has taught courses on topics relevant to patients and caregivers.
The future of a marriage inevitably changes with illness. Plans may have to be shelved. Friendships may not be so easygoing. Wayne M. Sotile, Ph.D., director of psychological services for the Wake Forest University Healthy Exercise and Lifestyles Program, acknowledges this reality: "Coping with this illness will be part of your marriage from now on…Today, most illnesses aren't short events. They're processes that go on and on and on, possibly for the rest of your lives. And both of you will need different things at different times in the process. Couples who take responsibility for this can build stronger, closer marriages despite the presence of illness."
Married couple touching hands
Photo by Amanda Belec, via Unsplash
Filed under Medicine, Science and Tech
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