What Happened To Ivy by Kathy Stinson

David Burke's eleven year old sister, Ivy, suffers from cerebral palsy and is wheel chair bound. Everything in his family's life revolves around Ivy, who needs round-the-clock care. Things weren't always like this for David's family. His father, who is a Classics professor, used to take him to the museum. At the cottage he went fishing with his dad. 

However, after Ivy began suffering from seizures following surgery at age eight, her deteriorating health has meant that David's life has changed drastically. Ivy now needs diapers and uses a wheelchair. His parents are consumed with all aspects of Ivy's care and she's due for another surgery to correct her spine soon.

All fifteen- year-old David wants is a normal life, where he can do things with his dad, where things don't always revolve around Ivy and maybe where he can even have a girlfriend some day. David begins a friendship with the new girl who's moved in across the street from him only three weeks earlier. Hannah is sweet and seems to like David and she's good with Ivy. David was worried Ivy would drive Hannah away but she seems to enjoy sharing David with Ivy.

When David's parents invite Hannah to come along on the family trip to the cottage David is thrilled. Up at the cottage though, David's father seems very stressed out. One day Hannah and David walk into town to get a few groceries, but when they return they find that Ivy has had an accident while swimming with her dad.

After Ivy's funeral people begin talking about what happened and there are rumours that Ivy's death was not as it seemed. Eventually David is confronted with the awful possibility that Ivy's death may not have been an accident when his father confesses one night to the family that he didn't try to save Ivy. 

Discussion

What Happened To Ivy explores the issue of mercy killing, specifically the killing of the children with disabilities. Initially it is believed that David's sister, Ivy has died as a result of a swimming accident. However, David, along with his family learn that his father did not try to save Ivy but simply allowed her to drown. This revelation by his father is devastating.

In confronting the reality of what has happened, David must work through not only his grief but his feelings of resentment and guilt. While dealing with his grief David discovers he must also deal with his guilt over Ivy. Many times David was resentful towards Ivy and the difficulties her disabilities created. "I loved Ivy, too. But I bet she didn't know it. Besides all the times I didn't speak up for her -- like today, which was nothing compared to sometimes -- there were the times I did worse than not speak up for her." In reflecting on what his father has done, David attempts to reconcile what his father did with the care and comfort he gave Ivy throughout her life. "Last night, was Dad trying to say he did what he did because he loved Ivy? How is that supposed to make sense? I'd sure never try to claim I fed her those worms because I loved her."  

Among the questions David asks himself are, What makes a person's life worth living? And how do we know whether or not that life is a good one? "Or was Ivy's life tougher than I ever let myself believe? How do you weigh crappy stuff like seizures and physio and people hardly ever understanding you, up against giggles and grins and just being happy with birds and pretty flowers and your sunhat and your turquoise bathing suit? How can anyone know whether someone else's life is worth living or not, especially if that someone can't tell you about it?"

David has an interesting discussion with his elderly neighbour, Will, who is now in a nursing home. When David tells Will that his father let Ivy die, Will tells him that he wished he had the courage to "do something for my Vera" implying that the courage is in mercy killing rather than helping that person live better. But later on David questions this approach too. He recognizes that it is likely Ivy would have died eventually, if not in the lake, in the hospital - a place she hated. But he asks whether Ivy deserved to live life on her terms. "But even if it was like that - and maybe it wasn't - did that make it okay for Dad to do what he did? To decide - whatever made him decide - that her life would now end? Sure, she's free of all the crap life handed her. But didn't she deserve more chances to splash in her bath and laugh at Shamus's tricks? To talk to the birds and east orange gummy bears? "

In the end, David doesn't seem to know whether what his father did was right or wrong. When a witness comes forward to say that they saw what happened that day at the lake, David's father is taken in for questioning. So What Happened to Ivy ends with the question of Ivy's death unresolved.

This book attempts to address the thorny issue of mercy killing and does so reasonably well, but leaves the question open for the reader to decide. Predictably it leaves out the important point that there are usually options to murdering a person who is disabled and suffering. While Stinson does tackle the quality of life issue rather well, what is never discussed in the book are the options that might have helped Ivy's family cope with her overwhelming medical problems so that her father might not have considered doing what he did. It seems her family either didn't give this much thought or outright dismissed their options, as evidenced by the brief mention of putting her into a group home, which is immediately rejected by her mother.

This short novel closely parallels the story of Robert Latimer who was convicted of second degree murder in the death of his disabled daughter Tracy. Although Latimer served seven years of a ten year sentence, he maintains that his premeditated act of euthanizing his daughter by carbon monoxide poisoning was an act of love. Latimer was portrayed in the media as a loving father who did not wish to see his daughter continue to suffer. Similarly, David's father is portrayed as a caring father, so much so, that Hannah, whose father has abandoned her, refuses to believe that David's father did anything wrong.

In Canada there have been several recent incidents of mercy killing and not surprisingly, we see the case being made for the euthanizing of the severely disabled, those terminally ill, and the elderly. As the Council of Canadians with Disabilities correctly states, "murder is not mercy".

Book Details:
What Happened To Ivy by Kathy Stinson
Toronto: Second Story Press     2012
146 pp.

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.