Showing posts with label dementia. Show all posts
Showing posts with label dementia. Show all posts

Wednesday, February 21, 2024

Four Years Trapped In My Mind Palace by Johan Twiss

Fourteen-year-old Aaron Greenburg has been locked in his mind for the last two years. He and his two friends, Mike and Leon had gone swimming in the "murky waters of Dingleberry Creek in Bradley, California during a scorching July afternoon. It was his last day in Bradley before he and his parents, Robert and Linda moved to a city in the Bay area, Concord. Aaron and his friends spent "the day flying from the rope swing into the old swimming hole at Dingleberry Creek." Three days later, Aaron was in a new city, without his friends and so ill he couldn't move at all. At San Francisco General, Dr. MacPhearson diagnosed Aaron with a rare form of cryptococcal meningitis. Although his parents weren't aware of where Aaron and his friends had been, Aaron knew that he had contracted this bacterial illness from Dingleberry Creek where eucalyptus trees had been planted around the swimming hole.

Dr. MacPhearson told Aaron's parents that he was "as good as dead. He is completely unresponsive and in a vegetative state. We highly doubt he can hear or even recognize you and that the meningitis has caused severe and irreparable brain damage."  This is shocking to Aaron who can hear everything being said about him but is unable to respond in any way. For three months, his parents attempted to care for him at home but with both of them being in their sixties, it simply too much. His mother was forty-six when she had Aaron, a surprise baby! Now he lives in Restwood Suites Senior Care Center in Walnut Creek. 

At Restwood, Aaron is fed through a tube in his stomach. His only form of entertainment at first looking at a painting of a bowl of fruit on a table. Aaron would pull this painting into a magical world he creates, called his mind palace, a sort of castle - where he and the fruit have adventures.  Eventually Nurse Penny donated a black and white television with a VHS recorder and two tapes of Sesame Street from 1976. Except it's now 1987!

Aaron's life changes drastically once again, when an elderly man, Solomon Felsher is placed in his room. Solomon is a former jazz musician, who is Jewish, has dementia and needs constant supervision. His daughter Talia helps him get settled in and promises to bring Betty, his saxophone the next time she visits in a few weeks.

Once they are alone, Aaron makes the astonishing discovery that Solomon can hear his thoughts in his head. This means for the first time in two years, Aaron can communicate with another person. Over the next few weeks, Aaron shares conversations with Solomon and discovers he can only hear Aaron's thoughts, observations and questions that Aaron directs towards him as if in conversation. If Aaron is just thinking thoughts he can keep them private. This is a relief to both Aaron and Solomon.

However, Aaron also discovers that when Solomon is having a dementia episode, he gets pulled into Solomon's memories and becomes a part of them, actually living out those memories in his mind. This extra mental stimulation has a profound healing effect on Aaron as he begins to make a miraculous recovery.

Discussion

Four Years Trapped In My Mind Palace is a unique novel that combines realistic fiction with historical fantasy novel by award-winning author Johan Twiss. 

Author Johan Twiss writes in his Author's Note at the back that the genesis of the novel was a news story about a man who contracted a rare form of meningitis when he was child. This illness resulted in full paralysis, and being trapped in his mind, fully aware, for fourteen years. No one recognized this but fortunately the man eventually achieved enough recovery to marry and have a life. This situation reminded the author of men he knew who were also trapped in their minds, but by dementia and Alzheimers. "Merging these two experiences together Aaron and Solomon's  story developed -- a coming-of-age story entwined with and end-of-age story written with a hint of nostalgia, a hint of whimsical unknown, and a heartwarming hope for the beauty of life."

In Four Years Trapped In My Mind Palace, the main story of the novel is the relationship between a teenage boy, Aaron Greenburg who is in a "vegetative" state, (a loathsome term that is used quite frequently and should be replaced by something more accurate like non-responsive state) and an elderly man Solomon Flesher, who is suffering from dementia. Inexplicably, the two, who are roommates in a senior's home, can communicate via their thoughts. This allows Aaron to experience some of the defining events Solomon lived through during a sixty year span from the 1920's to the 1980's.

Initially Aaron has created his own world which he calls his mind palace, a palace with many rooms. Aaron describes it as  " a giant castle surrounded by green rolling fields, bordered by a dense, dark forest..."   Aaron and the fruit from a painting in his room that he brings into the mind palace have grand adventures. However, while "...  most of the castle stayed the same, with a throne room, banquet hall, kitchen, and armory, other parts were also changing, like the north clock tower. No matter what we tried, we could never find a passageway that led to the tallest tower of the palace." For some reason, Aaron is unable to reach the north clock tower which seems to suggest that him reaching the north clock tower offers an escape from his locked-in syndrome.

When Solomon arrives, he is able to hear Aaron's conversations in his mind and is soon pulling Aaron  into his own memories when he has a dementia attack. Before Aaron arrives in those memories though, he first enters his own mind palace, but often in a new room. At first these rooms seem to be related to something Aaron cannot have in his own life. For example, the room he enters before being in Solomon's first memory of the Jack Dempsey fight, is a large dining hall with a table laden with fine china, silverware, crystal glasses and food. Aaron stuffs himself with the delicious food before passing through a door that leads to Solomon's memory.  Aaron is unable to eat in a normal manner and must be fed through a stomach tube and can only dream about eating real food. Before being drawn into Solomon's memory a second time, Aaron finds himself in an auditorium-like room, on a stage with his trombone which he misses playing. 

As he enters each of Solomon's memories, encountering a new room in his own mind palace, Aaron moves from the weapons training area before the World War II foxhole memory, to the castle dungeon before the World War II concentration camp memory, to the south tower of the castle - the second tallest tower behind the massive north clock tower before meeting Walt Disney. This journey through his mind palace mirrors the gradual healing that is occurring in Aaron's mind. For example, Aaron shed's tears at his father's pain over his impending divorce just before entering the weapons training area, then he blushes over Sarah and is able to groan before entering the castle dungeon. As Aaron's recovery continues and he begins to learn to speak again, he enters the south tower of the castle which is close to the north clock tower.  Finally, as he begins to become more physically responsive, Aaron is able to enter the north clock tower where he sees his future and is thanked by a dying Solomon for his friendship. The north clock tower represents Aaron finally being freed from his mind palace. 

It is only when Nurse Penny sees Aaron visibly blushing in response to Solomon's granddaughter Sarah that she decides to get the doctors involved in re-evaluating Aaron. Up to this point she has refused to believe Solomon's view that Aaron is awake. This leads his physician, Dr. MacPhearson to realize that Aaron is aware and healing and to begin working with him. Aaron's progress is slow but ongoing. By the end of the novel he is able to communicate verbally and is upright in a wheelchair.

Since the novel is set in the 1980's, from 1985 when Aaron contracted meningitis, to 1989 when he begins to wake up, little was understood about patients who appeared to be non-responsive but were still alive. It was assumed these patients were completely unaware and had no or little brain function. Over the years, with better medical support, some patients have recovered and revealed that though they were unable to respond, they were completely aware of everything happening around them. In some cases, patients could hear and understand family and medical professionals discuss removing life support. Readers might be interested in the research being done at Western University in London, Ontario Canada by Dr. Adrian Owen. His Owen Lab (https://www.owenlab.uwo.ca/ ) has much information on his work to determine whether a patient in a "vegetative state" is actually conscious and aware. His work has surprised the medical community and given hope to many families with members who are comatose or locked-in.

At the end of the novel Aaron has a chance to reflect on the friendship he had with Solomon and the role of sickness and suffering in life. He decides that although he wishes he had never been sick, he would not give up the friendships he formed with Solomon and his granddaughter, Sarah,  and the experiences his illness gave him. Aaron is now sixteen years old and even though he's been ill for so long, he is hopeful about his future.

Four Years Trapped In My Mind Palace is a thoughtful, engaging novel with a unique and fresh storyline that should appeal to teens and adults alike. Twiss invites his readers to consider what makes life meaningful, especially in situations like those of Aaron or Solomon.

Book Details:

Four Years Trapped In My Mind Palace by Johan Twiss
Fresno, California: Milk + Cookies     2023
320 pp.

Saturday, July 21, 2018

Hour of the Bees by Lindsay Eagar

"Once upon a time, there was a tree, living on the shores of a green-glass lake, breathing in hot desert air. Its black branches grew green leaves and snowy flowers, and bees lived in the blossoms. The tree was a gift, protecting the people in the village from injury, aging, disease. Death."


Hour of the Bees is an enchanting tale about several generations of a Mexican-American family with a connection to a magical past, and their struggle to hold fast to their roots.

The novel opens with twelve-year-old Carolina and her family enroute to her grandfather's ranch. Carolina dreads spending the next two months - her entire summer vacation - on her Grandpa Serge's two hundred acre sheep ranch in the middle of the New Mexico desert. Carolina's grandfather has dementia so her father (Raul) and her mother (Patricia) plan on moving him into The Seville, an assisted-living facility in Albuquerque and selling the ranch. Their number one goal this summer is "not to upset Grandpa".

The ranch contains an old barn, a farmhouse that is run down and a dozen boney sheep wandering in a browned pasture. Carolina notes that "there's a black scabby tree stump on the edge of the pasture". Carolina's grandfather, Serge has a thin green oxygen tubes running into his nose, watery blue eyes and pale skin. After Carolina and her one-year-old brother Luis (Lu) are introduced, she stays on the porch to watch Lu and her grandfather. Serge tells her that there has been no rain at the ranch for a hundred years, "and no rain for a hundred years means no bees." He explains that no rain means no flowers and therefore no bees. But Carolina is certain she has seen at least two bees when they arrived.

Carolina's father attempts to convince Serge that they need to move him into a home and sell the ranch to pay for his care at The Seville. This doesn't go over very well with Serge whose relationship with Raul is strained. Raul left home twelve years ago and never returned. Now with the impending sale of the ranch, Serge feels that his son Raul is turning his back on his heritage. Over the next few weeks, Carolina and her family begin cleaning Serge's home and packing up his belongings.

Curious about her grandparents including her deceased grandmother, Carolina questions her father about his parents and his relationship with them. He tells her that Grandma Rosa was stubborn, fiery and adventurous, loving to travel. She died of cancer twelve years ago on Raul's birthday. But he refuses to talk about why he doesn't get along with Serge.

Unlike her father and mother and her older sister Alta, Carolina seems drawn to her grandfather. When she can't sleep one night, after spending time helping her father in the sheep pasture, she sits on the porch with Serge. He tells her there used to be a lake just beyond the ridge near the house. While Carolina believes this is Serge simply exhibiting more "word salad" - random words due to his dementia, Serge insists on telling her a story.

The story is about a boy named Serge and a girl named Rosa who lived in a village. The village was founded in 1480 by a group of Spaniards, in search of gold. Instead of gold they found an oasis, a "green-glass lake" and a huge tree.  The tree was unlike anything ever seen before, having black bark and emerald green leaves. It bloomed all year long, with beautiful, fragrant white blossoms that gave off a "honey-vanilla fragrance". The tree, Father Alejandro told everyone, was a gift. "Bees made colonies in the branches, and like good tenants, they kept the blossoms tidy...The bees kept the whole tree alive." 

Father Alejandro, who accompanied the exploration party, founded the village and built the mission.  They built homes of stone and red desert clay and married the local women, keeping sheep and goats. "Their children and grandchildren built huts of their own on the lakeshore. No one ever left. No one ever died. Those sailors grew old, yes, enough to be called elders of the village., but their aging was slow. They were cheating time."

People were born and aged slowly. Infancy took decades, people grew up and stayed. Whenever someone was hurt, the injury simply healed. In the story Serge tells Carolina, the boy named Serge watched one day as a cut to the bone on his friend Rosa's leg heals instantly. Father Alejandro explained that in the outside world people suffered pain and even death from wounds. But within the village, the gift of the tree made pain and aging impossible. For the young Serge this was a puzzling notion. Nevertheless Serge loved the village and the beautiful tree and he fell in love with Rosa who always seemed so full of life and who always had a cloud of bees trailing behind her.

However, Rosa was restless. Whenever Father Alejandro spoke about his travels, Rosa glowed with excitement. While Serge was content to stay in the village, Rosa was determined to leave it. She seemed to have an insatiable wunderlust."I've had enough of this lake, these stars, this tree,...We've seen everything there is to see here." Serge understood Father's stories, "that the world was the empty clam shell and the tree, the pearl. Nothing outside the village would ever compare with what they had."

Eventually Serge and Rosa married and as a wedding gift, Serge promised to travel with Rosa. But when the time came for them to leave Serge kept postponing their departure until eventually Rosa packed a bag and decided to leave. To keep her safe, Serge made Rosa a bracelet containing the bark of the black tree. Rosa left and did not return for years. But when she did she revealed to Serge the bark from the tree protected her from harm. And this leads Rosa to a decision that changes the course of the village forever.

As the weeks of the summer pass with Carolina spending time with her grandfather and listening to his  story, she finds herself drawn to him. "If it was anyone else, I'd be bored to tears, but when Serge talks, it feels like the only sound. My ears are magnets for his words."  She also begins to understand his connection to the ranch and the land.  Perhaps Serge's story is not just a story after all but the key to Carolina and her family's past and their future. Will they be like Rosa and throw it away or like Serge and remain faithful?

Discussion

In Hour of the Bees, Eagar makes use of the literary device known as a story within a story. In the novel the outer or framing story is about Carolina and her family packing up her grandfather's ranch and helping him make the transition to an assisted living facility in Albuquerque. He has dementia so his random statements about the drought and the lack of bees seem like a symptom of his illness mixed in with his confusion about where he is. There also appears to be a strained relationship between Grandpa Serge and Carolina's father who left the ranch twelve years ago. Grandpa Serge feels that his son has "spit on his roots" and he advises Carolina not to do the same.

Within this story is the second story, a remarkable story about a village where no one ever dies. This gift is tied to a huge black tree with emerald leaves, its roots touching a "green-glass lake". As a result, no one ever leaves the village nor has the desire to leave. That is until Rosa,  who is determined to some day find a way to leave. Her leaving brings about a catastrophe of immense proportions upon the village and its inhabitants who, filled with a desire to see the world, also leave.Their abandoning of their heritage and their gift leads to their demise. The reader is never sure until the very end whether the story is based in reality or part of an old man's imagination and dementia.

Carolina is eager to hear more of the story throughout the summer months, as her bond with her Grandpa Serge grows. Serge is determined to share with her the meaning of the story. He tells her to imagine the beautiful black tree and states, "No matter how far away you are when you bloom, you are always tied to your roots...Your roots are part of you, Caro-leen-a. You must never spit on them."  Serge's story causes Carolina to begin to question her parents decision to sell the family ranch.  Serge tells her, "Some people are afraid of the future. Your father is terrified of the past."

As Carolina hears more of the story she becomes convinced that the story Serge is telling her  is a story about what really happened to the village, the ranch and how the hundred-year drought came about. It is a story about her family's heritage and she's desperate to hear the end of it. From the very beginning of the novel there are hints that the story might actually be based in reality. The reader follows Carolina as she makes discoveries on the ranch that are part of Serge's story. She notes that "there's a scabby black tree stump on the edge of the pasture" and in a foreshadowing of an event in the story, wonders "Whose bright idea was it to chop it down and get rid of the only shade for miles and miles?"  While cleaning out Serge's closet, Carolina and Alta discover all the treasures that Rosa accumulated from her travels. When she questions her father about the items he tells her that only Rosa travelled, just as in Serge's story.  In amongst the treasures, Carolina finds the bark bracelet Serge made for Rosa before she left the village, "Black bard strung onto a leather bracelet... The bark swirls, grains trickling into formation, a cellular wooden waterfall frozen in time. It feels like staring at eternity, looking at this bracelet." It is the one item Carolina chooses from the closet as a keepsake. Carolina also finds an unusual black seed which she decides to plant. Later on she wonders about Serge's story because "So much of his story is stolen from real life." She wonders if Serge was always such a masterful storyteller and if he believes the stories he's telling her.  As Carolina eventually discovers, Serge's story is all too real.

Her time at the ranch changes Carolina's perspective on many things including how she values her Mexican heritage, how her family lives and even how she views the elderly.As a result of her grandfather's story, Carolina is challenged to reconsider how she has rejected in a simple but significant way her Mexican heritage. For example she and her friends have changed their names to hide their Spanish origin but Grandpa Serge urges her to use her full name. "Caro-leen-a...is a beautiful, strong, Spanish name."  Carolina who goes by Carol considers, "My friends Gabby and Sofie are really Gabriela and Sofia, but we don't call them that, not since Manuela Rodriguez...started going by Manny."  Later on when Mr. Gonzalez the real estate agent comes to the ranch, Carolina finds herself telling her mother that her father should care about his history, his family, and his roots. "I'm surprised, too - this sounds nothing like me. Caring about my roots? Worrying about what will happen to this ranch, this land?" By the end of the summer when they do leave the ranch Carolina is distraught that her family is giving up the ranch. The city, once comfortingly familiar now feels strange. "It's loud. Not just the traffic, but the city itself. A million people talking at the same time, no one listening. A million televisions on full blast, no one watching. The humming and buzzing of the bees has been replaced with the sound of electricity...It's deafening." Carolina feels "There's no air in the city." The air is "not real air, not like out in the desert." Her "street is a row of birdhouse, all of us boxed into our own yards by identical picket fences."  Carolina begins to wish she lived in the desert.

Her perspective on her grandfather changes too. At the beginning of the novel she sees her grandfather as "a rusty old man parked on the porch like a leaky, broken-down car." When her sister Alta states that Serge is "like the Crypt Keeper" with "Old-man eyes", Carolina notices "But there's something alive behind them. Like he has X-ray vision to your thoughts." As she goes to help her grandfather with the sheep, Carolina admits that she feels differently about him. "When my parents told me we'd be spending the summer here, I expected to have stiff, forced conversations with this grandfather I'd never met. I expected he'd ask me about school, about my friends, about what I wanted to be when I grew up. I didn't think  he's have anything interesting to say. I didn't think he'd spin a magical story about a tree and a lake and a girl..." Carolina's inward change is mirrored by and outward change too. When she sees herself in the mirror while trying on her new clothing for the upcoming school year, she asks "Who is this girl?"  Her hair "notoriously frizzy but usually tamed by a straightening iron, is a ball of tangled black yarn" and her skin "is leathery with tan", her eyes "sunken into my face with exhaustion, are dull and black". She describes her look as "feral, wild."

By the time Carolina leaves the family ranch she finds herself worrying about "Things like a lonely grandfather who still has a story to finish." When she goes to the Seville with her family, Carolina is shocked at the changes in her grandfather. She recognizes only his blue eyes, and instead sees a person "bloated like a fish with infected gills, chalk-faced, drooling." He is sedated to calm him and unable to talk at all. She is shocked that Serge is locked into the Seville unable to leave for a walk and she fights to see him, for her family to make time in their busy lives for him.

Eagar ties up all the loose ends to craft a touching conclusion to this novel, where Raul is reconciled with both his father and his heritage, where Carolina begins to take pride in her roots and where Alta, black sheep of the family who doesn't share Carolina's roots with Serge, is invited to be a part of their family.  Ironically it is when Carolina begins to accept her family's past and plants the strange black seed that the rejuvenating rains return.

The only drawback to this novel, is the unimaginative, bland cover discouraging young readers from ever cracking the cover. Eagar has crafted a lovely story that deserves a beautiful cover and there certainly was enough material in the story to design something that would draw readers in. What a shame.This is a lovely, unique novel for young readers looking for something very different to read.

Book Details:

Hour of the Bees by Lindsay Eagar
Somerville, Massachusetts: Candlewick Press     2016
360 pp.

Sunday, November 27, 2011

Turn of Mind by Alice LaPlante

Turn of Mind tells the spellbinding story of Dr. Jennifer White, a sixty-four year old retired orthopedic surgeon specializing in hands, who is implicated in the murder of her neighbour and best friend, Amanda O'Toole. What makes this story so unusual is that it is told in the voice of an obviously intelligent woman as she slips between lucid moments and periods of dementia. Jennifer recounts what is happening to her in the present but also reveals pieces of her life as she remembers them. From this the reader must try to piece together what happened the day Amanda was murdered but also must attempt to understand Jennifer's past and her relationship with the murdered woman.

The novel opens with the police questioning Jennifer in her home at 2153 Sheffield Avenue in Chicago where she lives with her personal caretaker, Magdalena. Her neighbour, 75 year old Amanda has been found dead in her home just down the street from Jennifer. Jennifer is a prime suspect because Amanda's corpse has been found mutilated - four fingers on her right hand have been surgically removed. When Jennifer is interviewed by Detective Luton, she apparently has no idea that her friend has been murdered, nor can she really provide any information to police. The persistent Luton, however, is convinced that locked in Jennifer's mind somewhere is the truth about what happened to Amanda.

Discussion

Throughout the novel, the reader, through Jennifer's narration, gradually explores the complex relationship Jennifer and her husband James had with Amanda and her husband Peter as well as the relationship she had with her children, Mark and Fiona. Jennifer was married to James, an attorney, who recently passed away due to a heart attack which occurred while he was driving. Amanda and Peter, who had no children, eventually divorced after 40 years of marriage, with Peter moving to California to live with a younger woman. Amanda and Jennifer had a combative but close relationship; both women had strong personalities and were very controlling.

Jennifer's voice is authentic and very realistic when she is suffering through her episodes of dementia. This is especially so as she describes her actions and feelings whenever she wanders, whether it be from her home or from the care facility she is placed in later on. Jennifer's narration reveals that the two couples became emotionally entangled, and that secrets where discovered on both sides. It is difficult for the reader to determine whether or not Jennifer did murder her friend - an indication that Alice LaPlante succeeds brilliantly in masking the truth until the very end of the novel. There are plenty of hints and plenty of potential suspects too! The ending with its ultimate (and possibly even predictable) twist is quite satisfying.

Two of the more unusual themes in this novel are that of religion and hands, both of which are separate themes and yet also interconnected. The main character, Jennifer White is a lapsed Catholic who hasn't been to confession in forty-six years. Because she studied medieval history as a graduate student prior to medical school, Jennifer has managed to collect various Catholic artifacts over the years, such as a large statue of St. Rita of Cascia, the patron saint of impossible causes, and a St. Christopher medal (patron saint of travelers). But among her most prized is a copy of The Icon of The Three Hands. The latter item is worked into the novel in a fascinating way because it involves the loss of a hand, a healing and it also represents the nature of the relationship between Jennifer and Amanda.

The icon was painted by St. John of Damascus who lived under Muslim rule and therefore was forbidden to have images or statues. The Byzantine Emperor, Leo III issued a verdict forbidding veneration of holy images, which St. John wrote against numerous times. When the Emperor denounced John to the Caliph, his right hand which he used to write the treatises defending veneration was cut off. After begging to be given his amputated hand, he prayed for hours in front of an icon of the Mother of God and his hand was healed. In thanksgiving to the Theotokos, John of Damascus added a third hand - a copy of his own right hand made of silver. The Mother of God icon is thus known as the Icon of the Three Hands.

An expensive 15th century copy of this unusual icon was purchased by James for Jennifer who was drawn to it, perhaps because she is a surgeon who specializes in healing hands, something the icon represents. When Amanda sees the icon she immediately covets it but not for the same reasons as Jennifer. It is something Jennifer loves dearly and Amanda recognizing this uses this situation to warn Jennifer that she knows something about her and James - a secret that could unravel their life. The reader is presented with this view of Amanda as a manipulative and controlling woman who is determined to find a weakness in James and Jennifer.

Turn of Mind is a novel with a bit of mystery, told in a unique way and which touches on themes of love, betrayal, power, aging and identity, Turn of Mind, winner of the prestigious Wellcome Trust Book Prize, will more than satisfy.

Image of The Mother of God of "The Three Hands" credit: https://www.monastiriaka.gr/en/blog/mother-of-god-of-three-hands-trojerucica-hilandar-monastery?srsltid=AfmBOor3JyAaP6TC2ng-WoLuOHOfmGwhraZmRc5XtmPC_MRyMwvwJaqj

Book Details:
Turn of Mind by Alice LaPlante
Bond Street Books Doubleday Canada 2011
307pp.