Thursday, March 31, 2011

Review of The State of Me, by Nasim Marie Jafry

I loved Jafry's The State of Me.  The author did an amazing job of turning the horrible experience of living with chronic, disabling ME into a story that is funny, entertaining, and tender.   (ME is the U.K. term for what the U.S. calls CFS or CFIDS, and which the patient populations has recently begun calling ME-CFS.)

The story takes place in Scotland, where our protagonist, Helen Fleet is studying French at the University.  She comes down with ME soon after she departs for a year abroad in France.  Worsening symptoms force her to return home before Christmas break.  What follows are multiple ordeals:  getting a diagnosis; exploring experimental treatments; coping with a failing body and brain; navigating the complexities of relationships with lovers, family, friends, and well-meaning strangers; and dealing with the psychological trauma of becoming dependent upon others.  None of this is spectacular.  Those of us with the illness have all been through it to some degree.  But it is not something healthy people understand, nor do those with recognized, less disabling, chronic illness.

And good stories have been written about debilitating chronic illness.  Right away I think of the opera, La Boheme (tuberculosis), the film Hilary and Jackie (multiple sclerosis), the popular novella Love Story (leukemia).  Over three centuries of fiction writing, illness has been a common theme, most often fatal illness of its dramatic potential. After al, what could be more suspenseful than worrying that the hero or heroine will die?  Of course, if the hero or heroine dies, the novel comes to a screeching halt.  And so illness is almost always presented through the point of view of a lover or family member routing for the survival of the afflicted.

Few people die from ME-CFS.  Rather, most of them experience a moribund state in living, a state so devoid of mental enjoyment and physical activity that they often wish for the relief of death.
Doctor:  The good news is, your disease isn't fatal.
               The bad news is, you'll wish it were.
Jafry brilliantly takes us through the experience from the point of view of the patient.  With wit, sensitivity, pathos and hope, she leads us through Helen's transformation,  and so transforms our (the reader's) understanding as we empathize with Helen.

In fiction (at least in good fiction), we witness the way events cause people to change.  In the State of ME, most of the change takes place in Helen and her boyfriend, Ivan, as the other family members play a minor role in the situation..  We follow the trajectory of Helen's dashed hopes, we watch her reconstruct new hopes, and eventually share her joy at realizing two of her greatest dreams.  It is a journey from victim to survivor to thriver.

The success of the novel is due to Nasim Jafry's wonderful voice, which is wry, consistent, clever, and observant.  A few carefully chosen details convey a great deal.

Internal monologues are rendered with a variety of techniques, including one I found extremely effective for conveying the internal dialogue people with this illness imagine to justify their behavior to a confused, judgmental world.
    stranger  What do you do?
    me  I work one afternoon a week.  I've been ill (for fifteen years).
    stranger  You don't look ill.
    me  That's good, isn't it?
    stranger  You seem to have a lot of energy
    me  That's 'cos we're sitting down just talking.
    stranger  Why can't you do a job where you can sit down?
    me  Because it's not just my legs.  If I overdo it, my arms feel mashed up and my head shuts down. I can't think straight.
    stranger  I see.
     me   You don't believe me, do you?
    stranger No, not really
    me  I've got more fucking 'O' grades and Highers than you've had hot dinners, so please just leave me alone (into myself).
You can see from this excerpt how much content and emotion Jafry conveys in a few short lines near the beginning of the book (it's on p. 6)

If your fiction diet consists of mystery, thrillers, and romance, you'll probably find this book too slow.  If, on the other hand, you love classics like Jane Austin, Henry James, Marcel Proust, and modern writers like Andre Aciman, Joyce Carol Oates, or Anita Brookner, you'll enjoy The State of ME.


At first, I was a bit thrown by the slang --- "I went upstairs to finish hoovering, and Piedro made omelettes for everyone else.  He wasn't as glaikit as he looked"  but found that as I read, the context made it pretty obvious, and it wasn't crucial for me to know the exact meaning of hoovering and glaikit.

Clearly the story has a strong autobiographical foundation, as much fiction does (think of Sylvia Plath's The Bell Jar)  but that doesn't diminish the author's accomplishment in pulling together a finely-written story with all the elements of a good novel.

It's a shame the book isn't more widely read.  Tell your friends and family about it.  New are used copies are available online at amazon.com and abebooks.com

The front cover doesn't do justice to the book (see below).  The back cover is fabulous!



Comments:   I got quite a bit of heat from my review of Anderson's novel in the comment section.   I wonder if anyone will comment now that I have nothing negative to say?  Post your comments on the book, the review, or whatever you want.  

Wednesday, March 2, 2011

Review of Chronic Fatigue Syndrome: A Novel, by Caroline T. Anderson

Chronic Fatigue Syndrome: A Novel is a self-published work written with the intention of raising awareness about CFS.  This is a good thing, and I commend the journalist working under the name Caroline T. Anderson for her compassionate intentions.  I enjoyed parts of the book, but I also found (as in every other self-published book I've read), that it needed something to climb into the class of a fine novel.  I wished the author had worked with a publishing company to benefit from the advice of their experienced fiction editors.
  
However, the novel is fun for a person with CFS/ME to read  because the book has a happy ending. Furthermore, it is a very short novel, 160 pages, large print, double-spaced.  The characters tend to be stereotypes and could use some fleshing out so that readers better identify with the challenges they face.  I also wanted the author to tie up several loose threads, like telling us what really happened with the guy at the CDC. 

As narrator, Anderson clearly identified with the heroine of the book, the financial journalist Alistair McKenney, who lives in a small town in Ohio on a farm, tending to her horses and chickens as she writes and researches for a financial daily.  As the novel opens, we meet Alistair, a single mother with teenagers, researching the strange illness that has floored a high percentage of people in her small town, most of them women.  She soon dis;covers the mystery illness has appeared in other communities, and has been misnamed CFS.  And the more she researches, the more she starts to suspect something unfair going on.

Soon Alistair suspects a cover-up involving government and insurance companies, who would rather save money, rationalizing their obfuscation of the truth by denying the reality of the illness, especially of its contagious nature.  Alistair soon educates the only physician in town who is trying to treat the afflicted patients, and inspires this physician/friend to put her patients on anti-virals. Her teenage kids get involved in the research, being internet whizzes like all teenagers, as do several adults in town, who gather at Alistair's house at night with their laptops looking for information to connect the dots between what seems to be a conspiracy to prevent CFS from being studied and treated. The ostensible motivation for this evil collusion of government and insurance company is greed. The insurance companies don’t want to pay out claims for a million to four million Americans. The CDC's motivation is not clear.


It will probably annoy you, as it did mean, to read through the many boring quotations at the beginning of the book, most from researchers claiming CFS is a psychosomatic illness.  If I hadn't purchased the book, I surely would have put it down before I got through page 10.  Expanding the novel with a sub-plot, seen through the point of view of a patient getting this kind of treatment from a doctor, could have helped the reader feel the outrage Alistair feels on behalf of her friends and townspeople. Conflict leads to interest, whether an external conflict or an internal conflict in the mind of the characters.  The first part of the novel could use more of this.

The principle conflict in the novel centers on what the CDC, in cahoots with insurance companies and their paid ‘research’ scientists, are willing to do to prevent CFS from being identified as an organic illness of viral origin.  In a scene where Alistair confronts the CEO of a big insurance company, the author reveals the hypocrisy and cruelty of policies that deny payment for lab work and MRI’s that would show viruses and brain lesions while denying disability to the same individuals for failing to prove that they have a true illness.

The story gets exciting about p. 50, when websites which the researchers have bookmarked start disappearing overnight, and the next day, a black Mercedes swerves onto Alistair’s farm stopping a few feet from her pond.  Immediately we know the guy who gets out of the car is trouble (if you’re slower to catch on, the author gives you lots of signs, like the pregnant mare taking an instant disliking to him), but our heroine is taken with the driver’s good looks and begins dating him.  As the story progresses, the handsome mean guy tries to discourage her from moving forward with her intended newspaper expose' on the conspiracy while she, a gutsy heroine, becomes all the more determined.  I won’t give away the rest of the plot, except to say that there are several exciting encounters between Alistair, this guy, and the insurance company whose stock will plunge in value once her story is published in the financial newspaper.

One conceptual problem with the story is that Big Pharma is nowhere to be seen.  If antivirals were as effective as Anderson makes them out to be in the novel -- returning everyone in town to active lives --Big Pharma would be seeing billion dollar signs in the profits they’d make from getting their drugs approved as standard treatment for this illness.  They have the money and the political clout to accomplish this.  Yet we know that, while some people are helped immensely with anti-virals (see Martin Lerner’s work at http://www.treatmentcenterforcfs.com/), many cannot tolerate them, get worse on them, or take them without improving at all because their infections are bacterial, fungal, or environmental toxins have created the immune dysfunction that has allowed numerous opportunistic infections.

I wished the author had taken the time to educate herself more about theories and research on this illness besides the new retrovirus thesis, which may or may not turn out to be true.   I wish she had found a way to show the difficulties patients with this illness experience in their daily lives, and in their search for understanding and treatment. 

The patients are minor characters on the side lines, just as CFS patients are in real life.  The reader never gets to know a person with CFS as a human with hopes and feelings and conflicts.  Alistair is full of energy and grit.  We root for her because we want to be like her -- idealistic, courageous and determined.