Still Alice

Author(s):

Lisa Genova

Publishers:

Pocket Books

Edition:

2010

ISBN:

1847396240

 

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"Still Alice" is the story of 50 year old Alice Howland, a brilliant Harvard professor, wife, and mother of three who is diagnosed with Early Onset Alzheimer's. Whilst it is a fictional work, it tells the story from the perspective of the sufferer and provides both a factual and well researched dialogue of the disease as well as a heart rending account of the experience.

The author Lisa Genova has a degree in Biopsychology and has a Ph.D. in Neuroscience from Harvard University. She has done research on the molecular etimology of depression, Parkinson's Disease, drug addiction, and memory loss following stroke. Genova is able to realistically take the reader through the progression of the disease and the changes it brings on for both Alice and her family. It is the story of the unraveling of Alice's life as her disease progresses.

Alice Howland, a Harvard professor of linguistics has trouble remembering a few things. But like most of us, she doesn't initially worry that there is something seriously wrong with her. Initially Alice's forgetfulness is same as anyone might experience - misplacing keys, struggling to think of the correct word at a crucial point in a sentence etc. Alice puts it down to middle age, impending menopause and the stress of her job.

One day while out for a run near the home she's lived in for 25 years, she can't work out how to get home. That's a lot harder to explain away, so she sees the doctor and soon has this awful diagnosis. Her equally academic husband, another Harvard Professor, investigates every avenue for treatment and alternative diagnosis. Through genetic testing she learns she carries a mutated gene responsible for Early Onset Alzheimer's, which means her children could have it, and so could her future grandchildren. It turns out that her pregnant elder daughter does indeed carry the same gene.

Even though the book is fictional there is no "happy ever after" ending, it reads like a truthful account. Alzheimer's is a slow, emotionally wrenching, death of cognition that affects not just the patient but family and friends almost as brutally. The book navigates the reader through that demise accurately as it happens to the Howland family, as they all struggle toward acceptance and the central character finds unique ways to maintain her dignity and her loose hold on reality.

Alice compensates for the holes in her memory in all kinds of ways. Her Blackberry helps her to remember appointments, and she becomes an avid great list maker, although she can't always make sense of her lists when she needs them. She devises a way early on to gauge how she's doing, and a backup plan in case she's not doing well, a letter she has written to her future more ill self. She keeps the letter in a file labeled Butterfly on her computer. However, by the time she needs the backup plan, she can't retain the information long enough to put it into place.

Alice finds a support network of fellow sufferers and courageously speaks at a major Alzheimer's conference for Physicians and Academics. Even though in her career she spoke on many public platforms to distinguished audiences as a specialist in her field, her achievement here was poignant and compelling. Here is an excerpt:

"We, in the early stages of Alzheimer's are not yet utterly incompetent. We are not without language or opinions that matter or extended periods of lucidity. Yet, we are not competent enough to be trusted with many of the demands and responsibilities of our former lives......I am not what I say or what I do. I am fundamentally more than that."

She ends by asking for more research and for sufferers to be supported to maintain and celebrate who they are. And that is the heart of "Still Alice" as she, and her family, try to hang on to the fundamental part of her that doesn't change because she can no longer remember who they are. The author finds a good balance of showing the devastation in Alzheimer's but also the beauty in redefined relationships.

Even though fictional, this is a very real book - very tragic and honest, but also compelling and inspirational.

I highly recommend it as it offers real insight and hope from many perspectives and has compelled me to read further on the subject.

"Still Alice" is endorsed by the Alzheimer's Association and a portion of the sale of each book is donated to research.