Showing posts with label Alzheimer's. Show all posts
Showing posts with label Alzheimer's. Show all posts

Monday, January 29, 2018

Stolen Secrets by L.B. Schulman

Livvy's mother, Gretchen has dragged her across the continental United States from Vermont to a new life in San Francisco. Livvy leaves behind her home with its beautiful backyard in Vermont, her friends that she's known since preschool and Sean, her first boyfriend. Her mother, a recovering alcoholic leaves behind her AA sponsor, Tom.

However it's soon apparent things are not what they seem. A friend texts Livvy to tell her that a help-wanted sign has been posted at her mother's old job, Gourmet City where she supposedly was laid off.  Her mother also seems to know her way around San Francisco quite well and she knows exactly which bus Livvy needs to take to get to her new school. Then on Livvy's first day of school, she watches from their apartment window as her mother. supposedly on her way to a job interview, scraps the resumes Livvy's printed out for her job interview, tossing them into the garbage bin.

Although she attempts to follow her mother, Livvy soon loses her in the streets of San Francisco and is forced to rush to school. On her first day at Grant High, Livvy meets Franklin D. Schiller, who introduces himself in their Algebra 2 class. It turns out Franklin D, as he likes to be called, is also in Livvy's International Debate class. Franklin D. decides he likes Livvy and sets out to try to win her over.

After school Livvy decides to check out 2846 Fillmore, the address she found on a sticky note, believing this to be the location of her mother's interview. Livvy discovers the address is not a business but a yellow Victorian house, occupied by an elderly lady. Her mother is there but soon leaves. Puzzled over her mother's presence at the house, Livvy goes to the front porch and meets the elderly woman and tells her that she saw her mother at the house. This leads the woman to remark that Livvy looks like her father, Lee Newman but not like her mother Gretchen and introduces herself as Adelle Pfeiffer. She invites Livvy in for tea and tells her that she has hired Gretchen to do odd jobs. Confused by Adelle's strange answers and random statements, Livvy eventually runs out of the house.

Back in their apartment, Livvy confronts her mother over the lies and tells her she met her grandmother whom she thought was dead. Her mother admits that Adelle is her mother, telling her that she moved to San Francisco because she was afraid she would be cut out of her mother's will if she didn't help care for her. Her mother's lawyer has arranged for Gretchen and Livvy to be paid a stipend and living expenses. Another caregiver, Vicki has been hired to work at night. Gretchen warns her daughter not to get involved with her grandmother who has a cruel streak. However, Livvy wants to get to know Adelle on her own terms.

At school Franklin D. continues to pursue Livvy inviting her to join him at lunch, but she declines giving the false excuse of having a prom planning meeting. Nevertheless Franklin D. remains persistent, even when Livvy provides numerous excuses. Finally she relents and begins eating with Franklin D. and his eclectic friends.

Livvy's mother refuses to tell her much about her grandmother or why she stopped visiting her when she was in college. Feeling guilty about staying away, Livvy decides to visit her one day. She notices a mezuzah, an ornamental box to hold a copy of verses from the Torah, on the door frame. This makes Livvy wonder if her grandmother is Jewish. During this visit, Adelle speaks a few words of German and mumbles about not being able to escape. When Livvy returns to her apartment, she discovers her mother has begun drinking again. Gretchen tells Livvy that caring for her mother with whom she has a poor relationship, with has triggered her relapse and she promises to call Tom. However, Livvy doesn't trust her mother and decides she will follow up with Tom on her own.

Livvy's time with her grandmother begins to raise more questions than answers. Her oma talks about journals, being a writer, about roll call and camp, being called Lazy Lillian by a sister she doesn't have. More random statements are made by Adelle including mentioning a place called Belsen, escaping on the last train and warnings to hide the jewelry. Livvy decides to search Belsen on her phone and discovers that Bergen-Belsen, was a women's concentration camp where Anne Frank and her sister Margaret died of typhus. The mystery about her grandmother begins to deepen.

At this time, Livvy's mother goes into crisis, having a serious alcoholic relapse that leads to her arrest and jailing for driving while impaired.  Tom travels to San Francisco and he and Gretchen tell Livvy that her mother will be returning to Vermont to do another session of rehab at Evergreen. Meanwhile Livvy is allowed to stay with her elderly grandmother, offering her the perfect chance to try to solve the mystery of her grandmother's past. With the help of Franklin D. who becomes more than just a friend, Livvy uncovers is a shocking past and a family secret that might explain her mother's serious problems but which also offers the possibility of forgiveness, recovery and redemption.

Discussion

Schulman's Stolen Secrets takes the tragic story of Anne Frank and imagines a fictional account of one woman's life as it intersects with Anne's. While Schulman was careful to craft a story  that "didn't invent a 'new' Anne Frank" her novel does include a fictional account of Anne's experience at Bergen Belsen. 

The novel, which  explores the issues of Alzheimers and alcoholism, also uses these illnesses as a means of driving the plot. Livvy's grandmother, Adelle Friedman has Alzheimers which allows Schulman to develop the mystery of her past.  Adelle's fragmented memories are mixed up between the truth of her identity and the identity she assumed at the end of the war but Livvy doesn't know this.  By having Adelle suffer from Alzheimer's, Schulman sets this character up as an unreliable narrator; her random statements to Livvy seem to suggest one thing, as do Adelle's short one or two page narratives in italics inserted between chapters. These short narratives tell of her time at Bergen-Belsen but they are vague enough to suggest to the reader the very opposite of what really happened. Eventually Livvy uncovers the unsettling truth.

Livvy's mother's alcoholism and her relapse set the stage for Livvy being left on her own and therefore being able, with the help of her new friend Franklin D., to investigate unhindered her grandmother's past. This also allows Livvy's friendship with Franklin D. to blossom. 

Bergen-Belsen at the time the camp was liberated.
Stolen Secrets is populated by a quartet of strong, well developed characters, the most appealing of which has to be Franklin D. Shiller. Franklin D. is eccentric, caring, and funny. Part of what makes this character so appealing is that he is part of a warm family and has caring, engaged parents - very unusual for young adult fiction. Franklin D. serves to provide some mild comic relief in what would otherwise be a dark novel.

In complete contrast, is Livvy's dysfunctional family; her parents are divorced with her father having run off with another woman to Australia (conveniently putting him out of the picture) and her alcoholic mother who has been sober for the past five years until her recent relapse. As is typical of alcoholic families, Livvy is forced to be the parent and care for her mother both physically and emotionally. This sets Livvy up as a sixteen-year-old, mature far beyond her years. Livvy is also unusual in that she loves facts and is gifted with a prodigious memory.

Just as her mother undergoes a journey of recovery in the novel, Livvy too experiences her own journey. With a mother who is very needy, Livvy hopes to establish a different relationship with the grandmother she believed to be dead. She's hoping her oma will be a heroine for her and quickly rushes to fit her into that identity. However, when Livvy discovers the truth about her grandmother's past, she feels angry and betrayed. She refuses to visit her oma's bedside. "Why should Oma have family at her bedside, stroking her hand, encouraging her to live? The Holocaust victims hadn't died with such love and care." 

But Livvy doesn't abandon her grandmother as her mother did. Instead of judging her grandmother "for her part in crimes against countless innocent people" Livvy decides to see her "as she had been, a girl around my age, who'd sold her soul to believe in a world of Hitler's creation-- one that promised jobs, solutions to economic problems, and a shiny new nation. A girl who'd ruined many lives, including her own." Livvy decides  "So in the end, I decided to accept Oma solely for who she was to me -- my grandmother. I was her last hope for absolution, the only person who could forgive her when she couldn't even forgive herself."  Livvy sitting by her dyig oma's bedside considers, "I weighed the facts one last time. My grandmother had made some horrific choices. But the reality was, I loved her in spite of it. Lifting her papery hand in mine, I bent down and kissed her cheek."

 Stolen Secrets is a very different novel that tackles many issues and yet works remarkably well. Well written, this novel is highly recommended.

Book Details:

Stolen Secrets by L.B. Schulman
Honesdale, Pennsylvannia: Boyds Mills Press   2017
302 pp.

Monday, October 3, 2011

Still Alice by Lisa Genova

Alzheimer's disease was an entirely different kind of beast. There were no weapons that could slay it. Taking Aricept and Namenda felt like aiming a couple of leaky squirt guns in the face of a blazing fire....Right now, everyone with Alzheimer's faced the same outcome, whether they were eighty-two or fifty, resident of the Mount Auburn Manor or full professor of psychology at Harvard University. The blazing fire consumed all. No one got out alive.

Dr. Alice Howland is a thoroughly modern, middle-aged professional woman. A brilliant, psycholinguist, she is the William James Professor of Psychology at Harvard University where she studies the mechanism of languages.But something isn't just right.

For Alice it begins with forgotten words during lectures, a moment in Harvard Square where she has no idea where she is nor how to get home, a forgotten trip to the airport to catch a plane to a conference she'd spent the day preparing for, and names on to-do lists that mean nothing to her.  Suspecting that something is seriously wrong, and without the knowledge of her husband John, Alice goes to see her doctor who refers her to a neurologist. After testing, Alice receives the stunning diagnosis of early-onset Alzheimer's. It is both numbing and terrifying for her. She is fifty-years-old.

Alice struggles to tell John, who is a cancer cell biologist, because telling him will make it all "real". When she does, his reaction is almost cerebral and clinical. At first reluctant to believe her, John offers Alice no comfort. Instead he tells her he needs to find out more about Alzheimer's.

They decide to have Alice undergo genetic testing, which if positive, would support the clinical diagnosis, but if negative, would not necessarily rule it out. When genetic testing confirms her diagnosis, Alice and John must now come to terms with her disease, what this will mean to them as a couple and individually, and the implications for their three adult children who are at risk. After John and Alice tell their children, two decide to undergo genetic testing.

As part of coming to terms with her illness, Alice must decide what it is that she wants most in the time remaining to her. Alice feels at this point, that her career at Harvard is far down the list and that she would also like to spend more time with her husband and family. She also feels that "...when the burden of her disease exceeded the pleasure of that ice cream, she wanted to die." And so Alice develops a plan to deal with that point in her life.

Discussion

Told in Alice's voice, Still Alice follows one woman's journey into the world of progressive neurodegenerative disease that is Alzheimer's. It is a journey that at times evokes strong visceral reactions especially when it is evident how painful Alice's loss of memory is to her family. These moments are present enough that they give readers a realistic view into the world of Alzheimer's. The heartache of seeing Alice, at times so blissfully unaware of her loss, is countered by the loving response of her family in these moments. Readers also experience Alice's confusion and anger when her symptoms flare. Alzheimer's is a disease that won't wait.

Genova incorporates a significant amount of information about Alzheimer's disease into the novel. Information is sprinkled throughout the story as Alice's family confronts her diagnosis and deals with the many issues that result from her disease - for example, medications and home care. There is much information on current treatments and drug regimens (current to 2008/2009 when the book was written and published). Some readers might find this tiresome,  but this contributes to the novel's overall storytelling.

Since the two main characters, Alice and John are brilliant scientists and two of their  children are also in the field of medicine, the discussions are naturally cerebral and scientific. These characters allow the author the liberty of doing inserting a great deal of medical information. When Alice goes in for genetic testing we learn that there are three gene mutations that a person can be tested for - APP, PS1 and PS2. Without going into too much detail, the reader is given some essence of the ramifications of genetic testing for Alice and her husband, and their children. The reader is allowed to formulate their own ideas on the usefulness of genetic testing and what having those results might mean for family members.

One of the main issues explored in Still Alice, is that of quality of life in terminally ill persons. Still Alice is a novel that presents the lives of those with Alzheimer's as being worthy and having meaning - even when their world narrows and especially when in the present they can't foresee such meaning in the future. In a culture in which preconceived notions of "quality of life" are benchmarks for assisted suicide and euthanasia, Still Alice offers the idea that we can't know what life will be like and how we will feel until we get to that point. This is theme is explored in the novel through the actions of Alice both before her disease has progressed and when a crisis occurs.

Not long after Alice has been diagnosed with Alzheimer's, she decides that when her disease develops to a certain point, she no longer wants to live. She programs into her Blackberry, five very basic questions which she will answer every morning. She decides that when she can no longer answer these questions she will follow the instructions in a file named "Butterfly" on her computer. The instructions are to take an overdose without telling anyone. Alice has a preconceived notion of what her life will be like, of what her "quality of life" will be like at this future point in time. It is something though that she really can't know until she arrives at that moment in her life.

Interestingly, it is other circumstances that propel her to try to commit suicide before she reaches her preconceived end time. John is offered a job at the University of New York, which he decides to take, despite Alice's worsening health. This will mean moving Alice from everything that is familiar to a strange and new city. When his family challenges him on this, he refuses to back down. Alice realizes that she has made many sacrifices for John and she has made it easy for him to love her,  but when it is time for his love to become sacrificial he is not interested. She decides she must make the "sacrifice". Fortunately, she does not succeed.

Instead, with the help of her daughters, Alice stands up to John, remains in Boston and her youngest daughter, Lydia stays with her. When John, who must know about the "butterfly" file which was on her Blackberry and on her personal computer, asks her if she still wants to go on living, she says yes. As Still Alice demonstrates, when Alice is long past her predetermined "criteria" for a happy and worthy life, she is still happy and feels intense love! She can still find things to live for - her daughters, her grandchildren. "She didn't need to go anywhere. She felt lucky  about this. She and the woman she sat with listened to the girl with very long hair play her music and sing. The girl had a lovely voice and big, happy teeth and a lot of skirt with flowers all over it that Alice admired.
Alice hummed along to the music. She liked the sound of her hum blended with the voice of the singing girl."

Genova's use of the butterfly motif both in the naming of the suicide file and in the image of the butterfly on the cover and the butterfly motif on each page of the book is significant to the story and the issue of quality of life. Alice wears a beautiful blue art nouveau butterfly necklace that her mother gave her. When Alice was a small child she cried over the fact that the butterfly, although very beautiful, had such a short lifespan. Her mother however, felt that a short life did not mean a tragic one. The life of the butterfly was still beautiful as it moves from flower to flower. In Alice's mind, she will be like the butterfly - she will have a short life but it will beautiful.

Neither Alice nor John are likeable characters. Alice is cerebral, a modern woman whose life work was her passion.  John seemed distant and never seemed to show Alice much comfort. However, as the novel moved forward, Alice's disease made them more human and more compassionate. Lisa Genova adeptly portrayed the inner conflict John experienced when offered an exciting new position at a different university.He was torn between his new opportunity and his responsibilities to Alice as a caregiver and husband. Nevertheless it seemed that he largely abandoned his wife to the care of their daughter Lydia. The part of marriage about "in sickness" didn't seem to be important to him. Perhaps he was willing to give up too soon on Alice, rather than helping her live out what was left of her life.  It was Lydia, Alice and John's youngest child and the one who had a difficult relationship with her mother, who had great compassion and care for her mother. Alice's disease brought their relationship back on track.

Still Alice is fantastic book for book clubs, teens interested in reading adult books dealing with specific issues and for those interested in realistic fiction. There are so many issues, especially identity and loss, that can provide the impetus for discussion and debate.  
Book Details:
Still Alice by Lisa Genova
Toronto: Gallery Books 2011
327 pp.