Tag Archives: Alzheimer’s disease

Turn Back the Clock

The Memory Palace: A Memoir by Mira Bartok (Free Press, $15.00, 302 pages)

When she turned seventy-nine she wrote to tell me that although she was now legally blind she had decided to study medicine:  “I am thinking of going to nursing school…   That way, if I ever get sick or lose my sight completely, I’ll know what to do.”   I found a set of her teeth inside an old eyeglass case.

In The Memory Palace, Mira Bartok writes of a world that, sadly, too many of us will come to experience.   This is the world of the adult child whose parent is not only rapidly aging, but entering the throes of dementia or full-fledged insanity.   Whether caused by disease or mental illness, the results are the same – a parent terrified of having bad things happen to him or her brings those very results about through his or her own irrational behavior.   Bartok’s mother, Norma, was terrified of becoming homeless but became so after stabbing her own mother – who suffered from dementia – six times.

When her two daughters were young girls, Norma was diagnosed as having severe schizophrenia, and it cost her both a husband and a home.   Aside from the illness, Norma was a highly talented classical pianist who might have become a household name.   But it was not to be and Mira and her sister grew up in a hellish home with a mother who heard voices in her head, voices that caused her to lose touch with reality and normalcy.

As anyone who has lived through it knows, once a parent begins acting irrationally, their behavior will inevitably continue to deteriorate.   We no longer seem to have systems in place for properly dealing with the problems of the aged with mental illness.   They may be medicated or locked up for various periods of time (from hours to weeks or months), but they simply do not “get better.”

Bartok is to be commended for writing frankly about an adult daughter’s reaction to this, and it is mixed.   One third of her escaped by thinking back to the times when her mother was seemingly normal – a time before this parent’s rapid descent into madness.   One third of her lived in denial, literally trying to escape by hiding from her mother in Europe and elsewhere.   And the last third consisted of the daughter who sometimes had to take harsh actions against her mother – such as attempting to get a court to declare her incompetent – knowing deep down that the situation would only be resolved (made peaceful) with her mother’s death.

In this account it becomes clear to the reader that although Bartok lived a very difficult life due to their mother’s mental instability, she very much loved her mother and has wrestled with feelings of guilt (“I abandoned my mother to the streets.”).   As a young woman, Bartok was involved in an automobile accident that injured her brain and led to memory problems.   This provided her with a measure of insight into her mother’s faded connections with the world.

“…I go to the church and light a candle for my mother.   Not that I believe it will do any good; it’s just to remind myself that she is still lost in the world.”

By writing this blunt and painstakingly honest account of her mother’s troubled life, Bartok has performed an act of penance.   It is an act of humble penance in which she seeks to forgive her mother for literally losing herself.   It is an act of contrition in which she asks the world to forgive both herself and her mother for leading damaged lives.

This brilliantly written work reminds us that self-examination and self-forgiveness precede forgiving others for their real or imagined wrongs.   It’s a harsh world – a dark ocean – out there and we sometimes need assistance in navigating our way through it.   This memoir tells us that lighthouses exist.

Highly recommended.

Joseph Arellano

“If memory is a palace, let me live there, forever with her, somewhere in the place between sleep and morning.”

A review copy was provided by the publisher.   The Memory Palace was released in trade paper form on August 9, 2011.   “This is an extraordinary book.”   Audrey Niffenegger

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Yesterday’s Gone

Left Neglected: A Novel by Lisa Genova (Gallery Books; $25.00; 336 pages)

“I think some small part of me knew that I was living an unsustainable life.   Every now and then it would whisper, Sarah, please slow down.   You don’t need all of this.   You can’t continue like this.”

Once upon a time, a 37-year-old woman named Sarah Nickerson was a successful and driven executive working in New York City.   Not a moment was ever wasted, even while driving her automobile.   Work, work, work was going to result in Sarah’s having a perfect life…

“Ever since business school, I’ve had my head down, barreling a thousand miles an hour, wearing the flesh of each day down to the bone, pointed down one road toward a single goal.   A successful life.”

Except that one day Sarah was rushing down a freeway when she turned her attention away from the road for a couple of seconds too long.   Her car went over a guard rail, turned over and over, and she barely escaped with her life.   Just like that, she had brain damage, resulting in a condition that would not permit her to see things with her left eye.   This accident also left her with basic paralysis on the left side of her body.   In theory, her left eye still worked perfectly fine but her brain had lost the ability to process its signals and, therefore, the left side of her life disappeared.   This condition is known by many names but is often referred to – ironically – as “left neglected.”

Lisa Genova, a former neuroscientist and nurse, applies her medical knowledge just as tactfully and effectively as she did in her earlier self-published New York Times Bestseller, Still Alice (about an Alzheimer’s patient).   Genova writes with such precise focus and detail that the reader believes he or she has become Sarah Nickerson, and battles her physical and mental conditions right along with her.   Sarah is nothing if not a fighter, a very stubborn one.   She plans to beat this thing, and quickly:

“Thank God I’m a competitive, Type A perfectionist.   I’m going to be the best traumatic brain injury patient Baldwin has ever seen…  they won’t be seeing me for long because I…  plan to recover faster than anyone would predict.   I wonder what the record is?”

Like the journalist Nan Robertson in the recovery memoir Getting Better, Sarah decides she’s going to scam the medical establishment if it kills her, and it almost does.   She won’t give in and she certainly won’t back down.   However, she soon becomes exhausted trying to get a broken-down mind and body to work again and even begins to lose track of the days of the week:  “It’s the beginning of March, and I’ve been out of work for four months now.”

Eventually she views herself as fully recovering and re-entering the workforce for, after all, she’s Sarah Nickerson… But what if she can’t beat this thing?

“I have no interest in accepting or accommodating.   I have a brain injury that has not healed and no promise that it ever will.   I used to have a full and successful life.   Now what do I have?”

Well, Sarah has a son with his own medical issues who seems to need her, and a husband who would love to support her, but also loves the idea of her someday bringing in a paycheck again.   Just when they need the “old Sarah” back, she begins to realize the value of taking a time-out from the whirl of Manhattan life and living:  “I didn’t dream of having a brain injury in order to have the chance to sit and think…  That’s kind of a hard price to pay for a little R&R…”   But since she’s paid the price, she just might decide to take advantage of it.

The joyful part of this read is seeing how Sarah finds a new way of living that makes her whole, at least in terms of her spirit and soul.   She gets to see that life can be experienced without Gantt charts and due dates; without people needing her every second of the night and day.   It may have taken a brain injury, but our protagonist Sarah becomes a person who learns to live and love life without hesitation.

Who would have thought it?   Sarah Nickerson, a woman bathed in Gratitude.

Highly recommended.

This review was written by Joseph Arellano.   A review copy was provided by the publisher.

“Remember how you couldn’t put down Still Alice?   Well, clear your schedule – because you’re going to feel the same way.”   Jodi Picoult

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Out of My Mind

The Memory Palace: A Memoir by Mira Bartok (Free Press; $25.00; 305 pages)

When she turned seventy-nine she wrote to tell me that although she was now legally blind she had decided to study medicine:  “I am thinking of going to nursing school…  That way, if I ever get sick or lose my sight completely, I’ll know what to do.”   I found a set of her teeth inside an old eyeglass case.

In The Memory Palace, Mira Bartok writes of a world that, sadly, too many of us will come to experience.   This is the world of the adult child whose parent is not only rapidly aging, but entering the throes of dementia or full-fledged insanity.   Whether caused by disease or mental illness, the results are the same – a parent terrified of having bad things happen to him or her brings those very results about through his or her own irrational behavior.   Bartok’s mother, Norma, was terrified of becoming homeless but became so after stabbing her own mother – who suffered from dementia – six times.

When her two daughters were young girls, Norma was diagnosed as having severe schizophrenia, and it cost her both a husband and a home.   Aside from the illness, Norma was a highly talented classical pianist who might have become a household name.   But it was not to be and Mira and her sister grew up in a hellish home with a mother who heard voices in her head, voices that caused her to lose touch with reality and normalcy.

As anyone who has lived through it knows, once a parent begins acting irrationally, their behavior will inevitably continue to deteriorate.   We no longer seem to have systems in place for properly dealing with the problems of the aged with mental issues.   They may be medicated or locked up for various periods of time (from hours to weeks or months), but they simply do not “get better.”

Bartok is to be commended for writing frankly about an adult daughter’s reaction to this, and it is mixed.   One third of her escaped by thinking back to the times when her mother was seemingly normal – a time before this parent’s rapid descent into madness.   One third of her lived in denial, literally trying to escape by hiding from her mother in Europe and elsewhere.   And the last third consisted of the daughter who sometimes had to take harsh actions against her mother – such as attempting to get a court to declare her incompetent – knowing deep down that the situation would only be resolved (made peaceful) with her mother’s death.

In this account it becomes clear to the reader that although Bartok lived a very difficult life due to her mother’s mental instability, she very much loved her mother and has wrestled with feelings of guilt (“I abandoned my mother to the streets.”).   As a young woman, Bartok was involved in an automobile accident that injured her brain and led to memory problems.   This provided her with a measure of insight into her mother’s faded connections with the world.

“…I go to the church and light a candle for my mother.   Not that I believe it will do any good; it’s just to remind myself that she is still lost in the world.”

By writing this blunt and painstakingly honest account of her mother’s troubled life, Bartok has performed an act of penance.   It is an act of humble penance in which she seeks to forgive her mother for literally losing herself.   It is an act of contrition in which she asks the world to forgive both herself and her mother for leading damaged lives.

This brilliantly written work reminds us that self-examination and self-forgiveness precede forgiving others for their real or imagined wrongs.   It’s a harsh world – a dark ocean – out there and we sometimes need assistance in navigating our way through it.   This memoir tells us that lighthouses exist.

Highly recommended.

“If memory is a palace, let me live there, forever with her, somewhere in the place between sleep and morning.”

This review was written by Joseph Arellano.   A review copy was provided by the publisher.   The Memory Palace was released on January 11, 2011.

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Free Fallin’

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The Weight: The Story of Forgetting

We slouch under the weight of our memories…   This is just one of the brilliant notions revealed by first-time author Stefan Merrill Block in his unique and monumental novel, The Story of Forgetting.   I’m not going to play hide-the-ball, I’ll come right out and say that this novel (originally released in 2008) is one of the two best – along with Everything Matters! by Ron Currie, Jr. – that I’ve read this year.

Forgetting offers two stories melded together…   The basic story concerns the impact on a family of a parent’s early-onset Alzheimer’s; a family which is, shall we say, a bit odd.   “Abel…  is an elderly hunchback who haunts the remnants of his family farm in the encroaching shadow of the Dallas suburbs.”   And Seth may be a teenage near-genius who seeks to rapidly develop a cure for the dreaded disease that leads to forgetting – both mentally and physically – and death.

The other, imbedded, story is of a fantasy land named Isidora where people live near perfect lives in cities of gold.   Amnesia Clubs are formed “to discover a way to forget.”   In this imaginary and parallel universe memories are prison bars and forgetfullness is freedom.Forgetting large As with Everything Matters! it is virtually impossible to say anything more about the storyline without giving too much away…   What is clear is that Block writes laser-focus fiction in the manner one of our very best writers, Joan Didion, writes of real things and real life.   (What a gift.)   

This book may shake-up your way of looking at the past and present in your own life.   It is very much about the power of now:   “To remember nothing.   What more could one possibly ask of eternity?”

Recommended, recommended, recommended.

Review by Joseph Arellano.   Note:  This book was released in trade paperback form on April of 2009 (Random House).

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Coming Up Next…

forgetting (small)A review of The Story of Forgetting by Stefan Merrill Block.

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