Tag Archives: disease

For a Dancer

Five Days Left (nook book)

Five Days Left

Five Days Left: A Novel by Julie Lawson Timmer (Putnam, $26.95, 352 pages)

At first, it wasn’t a conscious decision, keeping her illness from them. She was in denial in the beginning, as loathe to admit to herself that everything was wrong as she was to admit it to them. But then, after her diagnosis, everyone around her became so overly concerned, so insufferably attentive that she started to regret anyone knew… (I)t was infuriating to watch herself deteriorate in the eyes of the people around her. Use the word “disease” and suddenly everyone will instantly treat you like you’re ill, Mara learned, even on days you feel fine.

Five Days Left is a close to perfect debut novel from Julie Lawson Timmer, whose background is in law. This is the story of Mara Nichols, a successful lawyer, wife and mother whose life is put on hold by a diagnosis of Huntington’s Disease. Mara fights to hide her symptoms from her co-workers and family members for months and years, but eventually realizes that her body is breaking down and out-of-control; the disease is going to take her life. So Mara decides that she will commit suicide on her next birthday. The narrative begins five days before the birthday on which Mara will end it all. Or will she?

(Her death by suicide) was a dreadful thing to do to a child, a husband, to such caring parents and friends, but really, who were any of them to judge? How could they ever truly know what she had gone through? Who were any of them to say they wouldn’t have at least considered the same thing?

Timmer does an excellent job of portraying how infirmity can make a coward out of the strongest individual. Mara goes from being a life-long workaholic to becoming a virtual invalid. Once proud, she eventually simply wants everything to be over with and no longer cares about how she’ll be judged upon her self-inflicted demise. It’s a timely, unique look at the mindset of a suicidal person.

Five Days Left (kindle edition)

There’s a secondary character and story that’s not as strong, and that story is a touch unrealistic. But all in all, this is a stunning work from Timmer.

Highly recommended.

Joseph Arellano

A review copy was provided by the publisher.

“…this impressive debut novel heralds the arrival of an extremely talented writer.” Jodi Picoult

Five Days Left is a heart-wrenching drama about a world in which there are no easy answers… This novel feels as true as life.” Christina Baker Kline

Leave a comment

Filed under Uncategorized

Every Day Is a Miracle

Every Day Is a Miracle by Victoria Jackson, Author of Saving Each Other: A Mystery Illness, A Search for a Cure, A Mother-Daughter Love Story (Vanguard Press)

Every day is a miracle.   That I do know, even though I forget it sometimes.

Isn’t that kind of the point of 2%?   It’s like by throwing a rare light show or random nightmare storm in our direction, the universe is just trying to get our attention so we don’t take anything for granted and just appreciate our days and the hours and minutes that make them up.

That’s what’s on my mind as I talk to a mom who has just lost her son, my daughter Ami’s age to Neuromyelitis Optica (NMO).   She sounds so strong.   For all these years I’ve been waging war with the image of Ali having to be wheeled across the stage at her graduation, maybe not even getting there.   Maybe that’s why I’m looking for ways to delay the ceremony.   And here is a mother whose son didn’t make it.   Not only that, incredibly, she’s calling not to talk about her loss but to thank us for the work of the foundation that gave him longer than they had expected.   She lets me know that friends and family have sent in donations for our Guthy-Jackson Charitable Foundation to be used in his memory.   Her voice is clear and resolute as she tells me to call on her for anything she can do to help raise awareness in the ongoing search for a cure.

When I get off the phone, sad and mad that we couldn’t do more, I fight a flood of fearful thoughts and just try to be in the moment to appreciate where we are.   The truth is that every worst fear that I could and did imagine for Ali – none of it has happened.   The dire prognosis that we were given hasn’t come to pass.

It’s true that I have lived too often with the subliminal concern that special events and usual rites of passage may be her last.   The irony, of course, is that she prefers low-key.   But my impulse was always to give the kind happy memories and make all the details so memorable that they’ll be able to relish them long into the years to come.

Even thinking that there could be a cap on the years to come for Ali is so sacrilegious, not even something I allow myself to think about, that I compensate by making every milestone the ultimate.

Senior prom, of course, had to be the absolute best in the world because (a) it’s prom, (b) there might not be another event like it and (c) I never went to prom and refuse to let her miss out on anything that life has to offer.

The logic and the love were really uppermost in my mind.   But then again, finding the most amazing dress and then having it altered — I went a little crazy, almost going so far as to tell the tailor that it has to be perfect because only God knew how much time she had left.

Evan once told me that you have to try to just have faith in the world.   That’s the lullaby I kept trying to sing myself now.   He has always said that to me.   Still, I looked around at other moms at the pre-prom party and realized that probably no other mother was thinking of her daughter in her very special dress the same way I was thinking of Ali.

This piece is an excerpt from Saving Each Other: A Mother-Daughter Love Story by Victoria Jackson and Ali Guthy.   Used by permission of Vanguard Press, a member of the Perseus Book Group.   Copyright 2012.   Saving Each Other will be reviewed in the near future on this site.

2 Comments

Filed under Uncategorized

Love is the Cure

In the 1980s, Elton John saw friend after friend, loved one after loved one, perish needlessly from AIDS.   In the midst of the plague, he befriended Ryan White, a young Indiana boy ostracized by his town and his school because of the HIV infection he had contracted from a blood transfusion.   Ryan’s inspiring life and devastating death led Elton to two realizations:  His own life was a mess.   And he had to do something to help stop the AIDS crisis.

Since then, Elton has dedicated himself to beating the epidemic and the stigma of AIDS.   He has done this through the Elton John AIDS Foundation, which has raised and donated $275 million to date to fighting the disease worldwide.   Love is the Cure is Elton’s personal account of his life during the AIDS epidemic, including stories of his close friendships with Ryan White, Freddie Mercury, Princess Diana, Elizabeth Taylor, and others.   It is also the story of the Elton John AIDS Foundation.   With powerful conviction and emotional force, Elton conveys the personal toll AIDS has taken on his life — and his infinite determination to halt its spread.

Elton writes, “This is a disease that must be cured not by a miraculous vaccine, but by changing hearts and minds, and through a collective effort to break down social barriers and to build bridges of compassion.   Why are we not doing more?   This is a question I have thought deeply about, and wish to answer – and help to change – by writing this book.”

Love is the Cure: Ending the Global AIDS Epidemic will be released by Little, Brown and Company on July 17, 2012.   All proceeds from the sale of the book will benefit the Elton John AIDS Foundation.

Leave a comment

Filed under Uncategorized

The Man Who Couldn’t Eat – Event Notice

What happens when a man who is obsessed with food is denied the taste of it?

“I have spent years of my life obsessing about my weight, feeling guilt over every mouthful.   Jon Reiner’s magnificent and devastating memoir accomplished the impossible.   It made me shut up and enjoy my food.”   Ayelet Waldman, author of Red Hook Road

“An engrossing and candid memoir…  fearless and singular.”   Publishers Weekly

On February 13, 2009, Jon Reiner – a James Beard Foundation Award-winning food writer – had just returned home with the week’s groceries (a task for this stay-at-home dad) when a near-fatal complication from his chronic battle with Crohn’s disease left him writhing on the floor in pain.   He was in desperate need of medical attention.

After emergency surgery to save his life, Reiner was placed on TPN (Total Parenteral Nutrition), meaning he was to receive nothing by mouth for 3 full months…  No food, no water, nothing but nutrition delivered by intravenous means.

“For a hospital patient, a (TPN) order is a condemnation.   It translates…  to: ‘starving on intravenous drip while your roommate groans over the vulcanized chicken, limp penne, and lumpy custard on his tray.'”

This memoir is the story of how Reiner’s body and his marriage – which had suffered from the stress of a chronic and potentially fatal illness – came to be healed at a difficult time in his life.   Kirkus Reviews called it, “An amazing, incredible tale.”   John McEnroe said, “I will never take eating for granted again.   Wow!   What a roller coaster.   All I kept thinking was, you cannot be serious!   But he was.”

The Man Who Couldn’t Eat: A Memoir (Gallery Books; $25.00; 320 pages) was released on September 6, 2011.   Readers in northern California who are interested have a chance to see Jon Reiner on Monday, October 17, 2011, at The Booksmith, 1644 Haight Street, San Francisco.   This reading and book signing event begins at 7:30 p.m.

You may want to eat dinner before you attend!

Joseph Arellano

1 Comment

Filed under Uncategorized

Heaven

Proof of Heaven: A Novel by Mary Curran Hackett (William Morrow; $14.99; 336 pages)

Grief never ceases to transform.

proof-of-heaven

Mary Curran Hackett has drafted a stirring and remarkable, life-affirming novel.   This is the story of a very sick and courageous five-year-old boy, Colm, who suffers from a rare disease that will kill him within two years.   He knows this and wants simply to see the father he’s never known before he departs this earth.

Colm’s mother, Cathleen, is an intensely religious Irish-American Catholic woman who will do anything to extend her son’s life, although she knows that “if her son were a dog, they would have put him out of his misery already.”   This includes taking him on a pilgrimage to the Abbey of San Damiano in Italy in the hope that Colm will be cured by a miracle.

Colm was one of a kind.

Colm’s disease is idiopathic, meaning that its origins and treatments are unknown to the medical world.   Colm suffers strokes  which put him into a condition of appearing to be dead before he returns to consciousness.   Colm believes that he has literally died on at least one or two occasions, and comes to accept that there’s nothing waiting for him after his death.

Colm (pronounced “calm”) is quite reminiscent of the character Tim Farnsworth in the novel The Unnamed by Joshua Ferris.   Farnsworth comes to give up hoping that the medical profession will save him, and he remains – despite having a wife and family – ultimately alone in his struggle against a unique, crippling disease.   Colm also thinks of himself as being alone, despite the smothering efforts of Cathleen to protect him, until a potential savior – a physician – arrives on the scene.

Dr. Gaspar Basu is a man who lost a son at an early age in India, and comes to love Colm as a type of replacement for his late son Dhruv.   Dr. Basu also comes to fall in love with Cathleen.   And so, he installs a pacemaker in Colm’s chest – in the hope of preventing further near-death experiences for Colm and agrees to accompany Colm and Cathleen on their journey to Italy.   Dr. Basu also joins with Colm’s uncle in supporting Colm’s efforts to find his father who was last known to be living as a musician in Los Angeles.

…by Colm’s seventh birthday he hadn’t had any other near-death experiences after leaving Italy.   To Cathleen it was a sign that God was answering some of her prayers.   Colm may not have been physically healed, but at least he hadn’t died again.   Perhaps the worst was behind him.   Perhaps the miracle took…

proof-of-heaven-rear

The other details of the story should be left for the reader to discover.   Kudos to Hackett for presenting a real world, gritty, yet soaring tale in which humans must make their own choices between hope and hopelessness (in a spiritual sense).   And rest assured that  once you’ve finished reading Proof of Heaven you may well look at life and its inevitable conclusion in a new way.

He had loved her.   She had loved him.

It was enough.

Highly recommended.

Joseph Arellano

A review copy was provided by the publisher. 

“…it was the tale of one boy’s search for heaven that brought me to tears.   I loved this book.”   Shelley Shepard Gray, author of Christmas in Sugarcreek

1 Comment

Filed under Uncategorized

Bobblehead Dad

Bobblehead Dad: 25 Life Lessons I Forgot I Knew by Jim Higley (Greenleaf Book Group; $14.95; 201 pages)

There is something about cancer that strikes a chord with nearly everyone.   Whether it is the fear that it could happen to anyone at anytime, the fact that nearly everyone knows somebody who has suffered through the dreaded disease, or some other mysterious quality that separates this affliction from others, there is no disputing the fact that the mere mention of cancer quickly gets people’s attention.

In his early forties, Jim Higley, a single dad with three young children was diagnosed with prostate cancer.   The prognosis was particularly ominous due to his family’s history of cancer and the fact that he had lost his brother to brain cancer just a few years earlier.

Bobblehead Dad: 25 Life Lessons I Forgot I Knew is his story.   The term bobblehead refers to the sports replica figurines whose heads bobble.   Early in the book, Higley recalls his fondness for them as a child and realizes that he has taken on that characteristic as a dad by routinely bobbing his head dismissively when he returns home from work and listens to his children’s stories of their days.

That is the beginning of the format of the book in which the author pairs childhood memories with his real-time cancer experiences to craft a series of 25 lessons focused on choices that allow for happiness and healthy relationships.

The writing is excellent.   The lessons initially appear to be a bit simplistic or quaint, but in the context of the author’s battle with cancer, the reader is much more inclined to internalize the inherent wisdom of many of them.   My personal favorite is Lesson 12:  Rest.   Some other examples include “Embrace Who You Are” and “Lessons Happen Every Day.”   Again, out of context, they might appear too unsophisticated for 21st Century America, but that appears to be exactly the point – they are not.   In fact, they are presented as foundational building blocks for life.

Due to consistency in voice and presentation, the book flows seamlessly from page to page.   The reader can easily relate to the anecdotes, topics, and relationships that permeate the true tale.   In no way is the book’s audience limited to males, cancer survivors, or other types of age ranges or subgroups.   It can be read quickly in a  few settings or in short segments as time allows.   Overall, Bobblehead Dad is a gem.

Well recommended.

Dave Moyer

A review copy was provided by the author.   Dave Moyer is the author of Life and Life Only: A Novel.   Note:  Readers who relate to this book might also be interested in The Happiness Project by Gretchen Rubin and/or Stumbling On Happiness by Daniel Gilbert.  

Leave a comment

Filed under Uncategorized

My Special Angel

One Summer: A Novel by David Baldacci (Grand Central Publishing, $25.99, 352 pages; Hachette Audio Unabridged version on 7 CDs, $24.99)

Take a break from your own life and get to know the Armstrong family of Ohio.   They are the central figures in David Baldacci’s poignant novel, One Summer.   This reviewer was captivated by the depth of character development, both male and female, that Baldacci brought to his tale of loss and redemption.   The added bonus was listening to the audio version narrated by two highly-skilled readers, Don McLarty and Orlagh Cassidy.   Together they provide a wide range of voices for the characters.   This blend brought the story to life in a way that would be hard to match with a print version of the book.

The story opens as Jack Armstrong, all around good guy and former military man, awaits his slow death from a rare and always-fatal disease while Christmas approaches.   Jack’s lovely wife Lizzie and three children are struggling to cope with the inevitable loss they face.   Each has their own way of doing so and 15-year-old daughter Michelle (Mickie) has alienated herself from everyone by rebelling against the entire matter with anger.   Deep down inside Lizzie knows she will have to go on without Jack very soon; however, she fantasizes about the entire family revisiting her childhood home in South Carolina during the following summer.  

Baldacci takes this premise and injects his own deeply felt take on loss by setting up a twist whereby Lizzie dies in a car crash and Jack miraculously survives.   Rather than playing on the sympathy of the characters he has created, Baldacci brings out the good and the weaknesses of everyone involved.   This is a tale that demands spirited action and dashing drama.   Baldacci delivers all this and more.   It is perfectly fine with this reviewer that the gritty reality of life coexists with a fairytale quality series of plot twists.  

There’s no mystery here, love conquers all.   Highly recommended.

Ruta Arellano

An audiobook review copy was provided by the publisher.   “In One Summer, (Baldacci) writes as beautifully and insightfully about the pathways of the human heart as he does about the corridors of power.   …(a) hugely emotional and unforgettable novel.”   Lisa Scottoline, author of Save Me.

1 Comment

Filed under Uncategorized

Simple Twist of Fate

The Immortal Life of Henrietta Lacks by Rebecca Skloot (Broadway; $16.00; 400 pages)

henreitta lacks

This begins as an excellent biography of a woman who might have remained unknown but for a miracle of medicine.   “At the age of twenty-one, Henrietta stared through the train window at rolling hills and wide-open bodies of water for the first time, heading toward a new life.”   Henrietta Lacks died in 1951 of cervical cancer but her cells are still alive.   To be exact, only her cancer cells continue to live but they may live for up to 100 years if frozen.   They are the so-called HeLa cells that are used by researchers throughout the world to advance the knowledge of how to fight and halt disease.

Author Rebecca Skloot has taken on the challenge of melding a family’s story with a tale of medicine and law.   The personal story is engaging and quite well done.   The reader will come to feel that he or she not only becomes acquainted with Henrietta Lacks, but also her late daughter Deborah, and her other children and grandchildren.   And, as Skloot gracefully notes, they are quite beautiful grandchildren.

This reader felt the telling was less effective when addressing the medical and legal issues.   That’s because the case is made that Henrietta’s cells were, in effect, stolen from her by Johns Hopkins Hospital.   Yet once you’ve read through two-thirds of the book, you learn that Hopkins explicitly met the medical research standards (and the legal requirements) of the day.   Indeed, it was a different time.   A relation of this reviewer gave consent for a cancer biopsy in 1950 in a northern California hospital.   Only later did the relative learn that her stomach cells were only removed in California; the cell slides were mailed to Johns Hopkins for the medical research and analysis.

There’s also an apparent contradiction in the events.   We’re told repeatedly that Henrietta did not consent to having her cells used for medical research.   Yet, her husband did authorize an autopsy and there’s also a reference to a death-bed conversation during which Henrietta was said to have told a physician that she was pleased that others might benefit from an examination of her cancerous cell tissues.   But even if this conversation never happened, the law at the time was what it was.

The author tells  us that the rights of research subjects were largely unprotected until 1966.   Yes, and this means that a lot of time is spent reviewing and debating the medical morality of an earlier time.   It is a moot point.

Henrietta’s daughter Deborah is the appealing figure in this account.   She is the family member who argued – passionately and perhaps appropriately – that one cannot hold yesterday’s medical professionals to today’s ethical and moral standards.   Deborah, in fact, jumps off the pages of The Immortal Life of Henrietta Lacks as the person who is brought back to life in the telling.

The descendents of Henrietta Lacks have never benefited from the use of her cells, leaving aside the issue of whether they were properly appropriated.   They have not received any money, and although HeLa cells are sold for medical research, the family does not have health care.   This is truly a shame, an injustice, and it is hoped that Skloot’s account will – in highlighting this issue – change things.

Henrietta Lacks deserves to be remembered, as does Deborah Lacks.   Rebecca Skloot has provided the tombstone that Henrietta’s family could never afford.   This true account is at its best when paying tribute to a woman whose life, in death, has benefited countless individuals worldwide.

It is encouraging to hope and think (and perhaps pray) that this account will result in a better life for the children, beautiful grandchildren and great-grandchildren of Henrietta and Deborah Lacks.   That would be the greatest tribute of all.

Highly recommended.

Joseph Arellano

This book was purchased by the reviewer.   

5 Comments

Filed under Uncategorized

A Hazy Shade of Winter

So Much for That: A Novel by Lionel Shriver (Harper; $25.99; 433 pages)

“…the biggest tipoff that she was not in as much denial as she feigned was that Glynis had no interest in the future.   That left everyone pretty much stumped.   When you weren’t interested in the future you weren’t interested in the present either.   Which left the past, and she really wasn’t interested in that.”

This is a fictional tale of two American families in 2005.   They are typical, yet atypical in that they are both being worn and ground down by the twin pressures of a fiscal recession and deadly diseases.   The primary family, the Knackers, is composed of Glynis, sculptress, wife and mother and mesothelioma victim (a form of cancer that is killing her quickly); Shep, the ever dutiful husband who is a millionaire on paper; their absent college age daughter Amelia; and their clueless teenage son Zach.   Their friends, presumably Jewish, are Jackson and Carol Burdina.   Jackson is an angry co-worker of Shep’s who is insecure about being married to the ever-beautiful Carol.   They have two daughters, Flicka, who was born with Familial Dysautonomia (FD) – which will likely kill her by the time she is 30 – and Heather, their healthy overeating daughter who is growing larger by the hour.

Shep Knacker’s longtime dream is to cash in on his home improvement business in order to live what he calls The Afterlife on an island.   However, just as he sells his business for a cool $1 million, Glynis is diagnosed with the cancer that gives her a little over a year to live.   The longer Glynis lives, the more Shep’s Merrill Lynch account will be drawn down.   Shep quickly learns that a million dollars does not last long in a world where an aspirin costs $300 and a regimen of chemotherapy goes for $30,000.

“That had been one revelation, insofar as there was any: everything was equal.   There were no big things and little things anymore.   Aside from pain, which had assumed an elevated position… all matters were of the same importance.   So there was no longer any such thing as importance.”

One of the ironies of this tale is that while 51-year-old Glynis fights to hang on to life to the point where she becomes a near madwoman, young Flicka looks forward to the day – at 18 – when she can end her own.   And while they trouble themselves with such basic issues, Jackson becomes obsessed with penis enlargement surgery – something he presumes will please his attractive spouse.

“(It was) a world where oblivion was nirvana, where one was never allowed the hope of no pain but only of less.”

Glynis eventually becomes angry as her supposed friends either treat her like a woman already dead, or fail to follow through on their original promises to be there for her when the going gets rough.   Yet, she stubbornly refuses to ever accept a fatal diagnosis, even while undergoing a year-long regimen of toxic chemo.   She begins to view herself as a marathon runner who never seems to be able to complete the 26th and final mile.

Shep is a man who has prided himself on being responsible his entire life.   He’s the man who has always paid his own way and played by the rules.   But others tell him that he’s a responsible taxpaying sucker especially when Medicaid won’t buy Glynis even a single aspirin for her pain.   He’s not sure what to do until, surprisingly, his ever raging and thought-to-be-dense friend Jackson sends him a message.

This is a work about human values and morals in the face of impending financial ruin and death.   What would we do – any of us – in order to keep our health and our homes for an extra day, week, month or year?   In this weighty and timely fictional tale you will find an answer.

Highly recommended.

This review was written by Joseph Arellano.   A review copy was provided by the publisher.   So Much for That is also available as an unabridged audio book and as a Kindle Edition download.

1 Comment

Filed under Uncategorized