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.

The Secret Language of Sisters by Luanne Rice

Sixteen-year-old Ruth Ann (Roo) McCabe is on her way to pick up her younger sister Mathilda Mae (Tilly) at the river museum. It's four o'clock on a February Saturday afternoon. The Connecticut River is almost frozen over and Roo wants to get a few pictures of the beautiful scene for her portfolio for a scholarship contest. She desperately wants to attend Yale University, where her father studied years earlier. Roo and Tilly's father died last summer from a massive heart attack.Tilly is waiting impatiently and continues to text Roo as does Roo's boyfriend Newton and her best friend, Isabel.

After taking a few photographs, Roo gets in her Volvo and while driving towards the bridge leading into the town of Black Hall, she picks up her phone and sends a text: "mins away." In the three seconds she's looked down at her phone she finds her car has drifted off the road and into the path of a woman walking her dog. Attempting to avoid hitting both, Roo swerves, causing her car to somersault down the bank and lands on its roof in the frozen creek. Hanging upside down in the car, bleeding, Roo passes out.

Tilly is eventually picked up at the museum by Newton who informs her that Roo's been in a car accident. When Tilly sees Roo in the ER she is conscious but nauseous as well as complaining about her head hurting and her neck feeling stiff.  Suddenly Roo has a seizure and suffers what doctors diagnose as a "brain stem stroke affecting the basilar artery system." Roo's doctors tell her family that she is comatose. Roo's eyes are open and protruding, her face covered in bruises and dry spittle and her mouth pulled back, frozen in a silent scream. Doctors say she is "incapable of emotion" and she's on a ventilator to help her breathe. A newspaper story states that Roo who is not named, is "expected to remain in a vegetative state" and that the accident is being investigated to see whether drugs or alcohol were a factor. This upsets Tilly but Isabel tells Roo's mother that she was taking pictures and that they were texting about this. This leads Tilly to wonder if Roo actually pulled over before texting her that afternoon. Could she have been responsible for Roo's accident?

Unknown to Roo's family however, Roo can hear and understand everything but she is unable to respond. "I commanded my limbs to move, but they didn't. How bizarre. I was trapped, mummified." Roo finds she can't speak and she cannot move her limbs. "Then I realized, No, there are no straps. It's me -- I can't move. I can't speak. I can't get anyone to hear me. I must have looked like a lifeless lump, but inside my mind I was wild, alive, in agony, going crazy." Even worse for Roo is "not having my family realize that I was awake and completely conscious, hearing everything. How could they not know?"

Neither her family nor the doctors are aware that Roo is conscious. Dr. Sarah Danforth, a specialist in pediatric neurovascular disease isn't and neither are her nurses. Eventually Roo begins breathing on her own and is taken off the ventilator. Tilly expects that this will mean a big change in her sister but when she arrives at the hospital, she finds Roo still unresponsive. Dr. Danforth tells Tilly that Roo still doesn't feel emotion. Tilly struggles with guilt because she believes she is responsible for Roo's accident and she asks her sister if she is guilty of causing her accident. But Newton tells Tilly the accident was partly Roo's fault leading Tilly to become extremely angry at him and getting herself placed on probation at the hospital. Roo understands all of this but cannot respond.

Being trapped in her body leads Roo to reminisce her how she and Newton first became friends, began dating, and planned to attend college together. She wonders what she looks like to him now. She also remembers how her father died suddenly last summer on a perfect summer day when he came home and went to lie down before dinner and never woke up. As the days wear on, Roo has time to think about the accident and realizes that she was texting before the accident and that she has done this to herself.

Meanwhile at school, Tilly struggles to cope with her sister's situation. This is further complicated by Isabel who takes Tilly to the place where Roo had her accident and reveals that she has found Roo's missing cell phone. Isabel tells Tilly that she felt guilty because she had been texting Roo when she had her accident so she came out to look for Roo's phone. When she found it she took it home, charged it and discovered that it was not her text that caused the accident but Tilly's text. Roo's last text, "5 mins away" was sent to Tilly. Isabel insists that they need to tell someone and Tilly reluctantly agrees to tell her mother. The two girls meet Martha Muirhead who is the woman who was walking her dog Lucan the night of the accident. Martha tells Tilly that she is just like her sister who was concerned for the her dog. Martha asks Tilly to let Roo know Lucan is doing just fine.

Tilly takes Martha's advice and decides to tell Roo that the dog she hit is now doing fine. But she also wants to tell Roo that she was the cause of her accident. As Tilly is talking to Roo and closely watching her sister's face she makes an astonishing discovery. It is one that completely changes the doctors diagnosis and gives tremendous hope to Roo, her family and friends. Life will never be the same, but maybe Roo has a chance to reclaim some of what she lost in the accident with the help of those around her and the bond she shares with her sister Tilly. And at the same time, maybe Roo's tragedy can save others from the danger of texting while driving.

Discussion

In the novel, The Secret Language of Sisters, author Luanne Rice tackles several themes including distracted driving and locked-in syndrome.

Regarding distracted driving, the message is that texting while driving seems harmless enough but can lead to unimaginable consequences. Rice pulls no punches in demonstrating just how devastating a few seconds of inattention can be. Roo is an accomplished, attractive young woman with a brilliant future ahead of her.  She has a boyfriend, Newton who adores her. She planned to gain early acceptance at Yale and was in the process of developing her photography portfolio for the Serena Kader Barrois Foundation Photography Contest. This award offers a thousand dollar scholarship which would help her get into Yale.; After her accident readers learn that Roo's photographs are especially captivating, making her injury seem all the more tragic. 

Dr. Howarth, a specialist in facilitated communication who will help Roo learn to communicate with the world around her, views Roo's photographs and tells her, "Your photos say so much about you Roo. You have a beautiful soul and a brilliant eye. You capture the perfect instant of beauty and action, and somehow you translate that exact moment, and the feeling that goes with it, to the viewer." Yet in mere seconds, Roo loses all this because of texting while driving. The message is not lost; distracted driving kills and ruins lives.

The second issue to be explored in this novel involves an unusual neurological disorder. Although initially it seems that she's just banged up from the accident, Roo has a stroke and passes out. It turns out that although her doctors believe Roo is in a coma and refer to her as being in a vegetative state ( now more accurately termed unresponsive wakefulness syndrome) she is actually conscious but completely paralyzed and unable to talk.

In Roo's case she cannot blink, but as her sister discovers, Roo is able to move her left eye up and down.
" 'Can you please just,' she began, and I must have been exasperated, because all I could do was look up at the ceiling, a heaven-help-me moment. My eyeball flicked up and down. Tilly stopped mid-sentence, mouth dropping open. And then...
'Roo?'
I'm here!
'Oh God,' she said. 'Did you just look up? Did you just move your left eyeball? If you did, and you hear me, do it again.'
I did it again."

This condition of being fully conscious but unable to move or speak is called locked-in syndrome (LIS). In LIS, a person loses the ability to voluntarily move with the exception of vertical eye movement as in Roo's case or blinking. It is extremely rare and is caused by damage in the brain stem as a result of head trauma or a stroke. Generally it is family who makes the discovery that their loved one is aware and capable of understanding everything happening around them. Sometimes neuro-imaging tools such as functional MRI scans are capable of showing that a person may be conscious but locked-in. If a person is medically stable, LIS patients can live for ten to twenty years, although recovery from LIS is rare.

As Rice showcases in The Secret Language of Sisters, those with locked-in syndrome are able to communicate with the world in a few ways. Roo begins with simple yes answers and then onto using a letter board. Also portrayed in the novel is the use of brain-computer interface technology which at this point appears to be an unusual option for someone with LIS. Because she is capable of moving her eye up and down, this means that Dr. Howarth can develop an operating system for Roo to communicate. He tells her "...instead of your eye movement telling me which letter you want, your brain waves will speak directly to the laptop, and the words will appear." After Roo has a computer chip implanted in her brain she is able to quickly learn how to communicate. It is this new ability to communicate that really helps Roo because she has many issues to deal with as a result of the accident.

First she must come to terms with the fact that she is partly responsible for the situation she now finds herself in. But she is also angry at her sister. "If I hadn't texted Tilly back, that wouldn't have happened; and if Tilly hadn't barraged me with a thousand impatient texts, I never would have reached for my phone."
She is also upset that what happened to her is in the media and her tragedy is being used in an awareness campaign by her mother and that Isabel has changed her portfolio submission to feature her situation. The pictures of how she now looks horrify Roo. Dr. Howarth puts things into perspective for Roo when he tells her, "As much as it hurts, Roo, this story will help others, keep them from texting behind the wheel. You have to know that. People's lives will be saved because of you." Roo also observes a growing attraction between her sister Tilly and her boyfriend Newton, making her angry, "crazed and jealous." Although Isabel and Newton both deny this possibility, Roo is certain of what she sees.

As Roo struggles to cope with significant changes in both her life and the lives of those around her, Dr. Howarth understands, telling her, "It's very hard to let go of things we love most, to accept that life changes." Roo remembers a line from her favourite poet, Rainer Maria Rilke, "We need, in love, to practice only this: letting each other go. For holding on comes easily; we do not need to learn it." Roo has done this with the father she lost last year and now must do it with Newton.

One of the themes The Secret Language of Sisters focuses on is the special bond sisters have with one another. Roo and Tilly had a special bond before her accident. Roo was the big sister, popular, pretty and smart who always looked out for Tilly. After the accident their roles are reversed as it is now Tilly who must advocate for Roo. Tilly who is wracked with guilt over texting her sister, believes that bond no longer exists. Her guilt over the text is also compounded by her growing attraction to Newton, whom she becomes close to and eventually kisses. Distraught over what has happened between herself and Roo, Tilly goes to see Martha Muirhead. Martha feels they have a connection because they both have sisters and they both feel responsible for what happened to them. She tells Tilly that a person has to use their talents to heal and survive and that it is the same with Roo. For Martha and her sister Althea, their love of singing was their secret language. She tells Tilly their bond may be damaged but it is not broken.

When Martha goes to visit Roo she reveals how similar she and Althea were to her and Tilly. She tells Roo that their relationship can't be broken because they are sisters and they speak the same language - they care about each other. "You get to be a sister only because you have Tilly. Without each other, that goes away. You're still beautiful and talented, but you're not a sister. It's the alchemy of sisters, Roo."

Rice ends her novel in an upbeat way, with Roo focusing on the positive, on what she still has and not on what she has lost. She forgives her sister and Newton, understanding that the relationships between her, Tilly and Newton have changed. Like the Martha and Althea relationship, Tilly and Newton realize that maybe because they both love Roo, they were hurting and sought solace in each other. Tilly begins to recognize Slater's interest in her and his support of Tilly draws her away from Newton. Meanwhile Newton demonstrates to Roo that he still deeply loves her and he is not planning to abandon her. He tells her, "You are my north star. Will you try to keep going with me?" He recognizes the girl he loves is still there, "Inside, you're the same as ever, so beautiful and smart, making me keep up with you."  and he makes it possible for Roo to continue to use her talent for photography.

The Secret Language of Sisters is a beautiful novel about the connections sisters share, and about how those connections can endure through even the worst of times. It is also a timely warning about the dangers of texting and driving and how life can change in the span of seconds.

Book Details:

The Secret Language of Sisters by Luanne Rice
New York: Point, an imprint of Scholastic Canada 2016
336

The Language Inside by Holly Thompson

Emma Karas has traveled with her family from Kamakura, Japan to America with her family so her mother can receive cancer treatment. Emma, her younger brother Toby and her parents left shortly after her mother was diagnosed with breast cancer.

Although Emma was born in the United States, she has lived most of her life in Japan and considers herself Japanese. When she was in Grade Nine, Emma transferred from a Japanese school to an international school. It was during this year that the devastating earthquake and tsunami struck northern Japan. Although her family was fine, some of her friends lost relatives. Emma and her father helped her best friend, Madoka and her dad clean up Madoka's grandparent's home in Miyagi. During the cleanup, Emma learned her mother was sick and that they must leave for America. Emma's plans to play varsity volleyball, attend a Model UN conference in the Philippines and to visit her friend Madoka were put on hold as their lives underwent a drastic change.

Now Emma finds herself, her mother and Toby living in a small town outside Lowell, Massachusetts, with her father's mother, YiaYia, while her father works in his firm's office in New York. She is enrolled in Grade Ten at the local high school. Emma misses her father and her friends, Madoka, Kako, Kenji, and Shin in Japan. In addition to coping with her mother's illness, Emma feels like she has abandoned her Japanese friends when their need was greatest. The stress of all these changes and her mother's illness leads her to suffer from severe migraines.

Hoping to help her granddaughter adjust to life in America, YiaYia arranges for Emma to volunteer at the Newall Center for Long Term Care as a poetry helper. Emma's first time at the center is marred by a migraine which causes her to collapse. A fellow student, Samnang, whom she was supposed to meet there, arranges for her to be taken to back to her aunt's home. Samnang's kindness to her is that start of a friendship that will blossom into a romance.

At the Newall Center, Emma is paired with a forty-six year old woman, Zena who has "locked in syndrome" and who can only communicate using her eyes. To communicate with Zena, Emma must use a special letter board.  Samnang  is paired with  two men Leap Sok and Chea Pen who are Cambodian refugees and who escaped the Pol Pot regime years ago.

Emma learns that Samnang is Cambodian and that there is a large Cambodian refugee population in Lowell, Massachusetts. He is part of a Khmer dance troupe and as Emma and Samnang's friendship develops she also learns that his life hasn't been an easy one. Emma can relate to some of Samnang's struggles to find his place in America. Although she is white, she feels Japanese. But in America, she doesn't look like she's out of place. As she tells Samnang, the language inside her is different from the language outside.
it's not just losing
Japanese words
and phrases

it's as if I've lost
half of myself here
but no one knows
because I'm a white girl

here
I don't look like I belong in Japan
here
I don't look out of place
here
everyone thinks I must be glad
to be "back" in Massachusetts

as if this were home
            but it's not 

Emma's work with Zena makes her realize how much her mother will need her in the coming weeks and months as she recovers from breast cancer. She wants to go back to Japan, but she doesn't want to be like Zena's daughter who "swam off with her sister" leaving her alone in the rehabilitation center. She begins to recognize that maybe she has a duty to help her mother as she struggles to heal from her illness. In addition to this Emma begins to realize that  she has many good things in her new life in America, not the least of which is her friendship with Samnang and her growing relationship with the Cambodian community. When her parents give her the option of returning to Japan with her father, Emma must make a difficult decision, one that will affect her life for years to come.

Discussion

The Language Inside is a beautifully crafted novel that tackles many different issues and does so very ably. There is the overarching theme of identity with Emma who is American but who feels Japanese inside and Samnang who is American but feels Cambodian. This struggle is reflected in the book's title about the language inside (that is how we feel and who we are) being different than what appears to be on the outside. Through dance both Samnang and eventually Emma begin to reconcile their two worlds.

This theme of identity is also expressed in the character of Zena who has "locked-in syndrome". On the outside Zena appears to be a person who can't communicate, appearing to have a life that is very limited. But Zena has a remarkable inner life that is trapped within her. Because she cannot readily communicate, her thoughts or "language" remains trapped inside her. Emma helps Zena to bring this "language inside" to those around her, through the creation of her poetry.

Zena was modeled after Julia Tavalaro, who was a 31 year old mother who suffered a debilitating stroke that left her paralyzed and apparently unconscious. Many years later it was discovered that Julia was fully aware of the world around her  but that she was only able to communicate using the motions of her eyes and head. 

Holly Thompson's free verse captures equally well the fear and hurt of a young girl struggling to cope with a new life and a family crisis, as well as the blossoming of a first love. Well written, evocative and fascinating, this lovely novel is for fans of poetry and also for those who wish to sample this genre. Thompson who was born in America, lives in Japan. This is her second verse novel.

Book Details:
The Language Inside by Holly Thompson
New York: Delacourte Press     2013
521 pp.