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Author Roger King describes effects of chronic fatigue syndrome

Tuesday 29 May 2012

 

From US publication the Amherst Bulletin:

 

Roger King
Roger King, a native of England, settled in Leverett in 1997
because he says it is a good place to lead a quiet life.
(Photo: Gordon Daniels.)

Leverett author Roger King describes effects of chronic fatigue syndrome

By STEVE PFARRER
Staff Writer
Friday, May 11, 2012

In his early 40s, Roger King of Leverett seemed in the prime of his life. Born in England to a working-class family, he'd earned a doctorate in agricultural economics. He worked variously as a teacher and in fields such as rural development and regional planning, living for long stretches in Africa and Asia. Along the way he fashioned a parallel career as a writer, penning three well-received novels between 1983 and 1992.

Then, in the early 1990s, he crashed - literally and figuratively. Teaching literature at a university in eastern Washington state, he was suddenly afflicted with a mysterious illness, leaving him so debilitated that even basic tasks became almost insurmountable. He was eventually diagnosed with what's broadly known as chronic fatigue syndrome (CFS). That condition would radically change his life.

But now King has fashioned something positive from the experience. In his new book, the autobiographical novel "Love and Fatigue in America," he retraces his journey with CFS across the western United States and eventually to the East during the 1990s. It was a period marked by prolonged stays on the couches of friends, visits to multiple doctors and dubious alternative healers, and a teaching job that utterly drained him: Unable to stand during the class, he sometimes struggled even to remain upright at his desk.

Part memoir, part fiction, "Love and Fatigue in America," published by University of Wisconsin Press, is an intensely personal story. The narrative includes journal-like entries, poems, meditations on love, lists - such as all the medications and vitamins he's tried - and observations about the harshness of the U.S. health care system. The story is at once both poignant and comic, combining descriptions of painful loneliness and longing with wry humor, as the unnamed narrator considers the shrunken parameters of his new world.

But King's tale is never self-pitying. There is much to admire in the narrator's continued effort to put one tired foot in front of another, day after day, year after year.

"I didn't want to write a misery memoir," King said with a laugh during a recent interview at his home. "But I did want to write about the experience, and I had a vague sense that I also wanted to write about health care, about what it means to lead a successful life, and about America ... I had to sort through these ideas and decide how to present them."

Quiet struggle

King, 65, has lived in Leverett since 1997, and he has past connections to the area. He studied for a master's degree in agricultural economics at the University of Massachusetts Amherst between 1969 and 1972, and he spent a semester in a graduate creative writing program there in the early 1980s. During the following decade he visited friends in the area periodically.

His new book concludes with his return to western Massachusetts. King says the move made sense after his travels following the onset of his illness, when he migrated between Washington, New Mexico, California, Nevada and points in between in a restless - and ultimately fruitless - quest for some sort of home.

"This is a good place to lead a quiet life, and as much as anything else, that's what I've learned is really important for dealing with this," King said.

He still struggles with CFS - April was a bad month, possibly because of pollen counts, he noted - but he has longer periods of remission, and he's learned to avoid extended mental or physical activities that might produce a new flare-up. He now meditates, prepares for things like travel by resting beforehand and keeps on an even keel emotionally. "Getting angry or obsessive about things is not a good idea," he said.

In fact, as the narrator learns early on in "Love and Fatigue in America," there is no cure for CFS, also known as myalgic encephalomyelitis (ME), chronic fatigue immune dysfunction syndrome (CFIDS) and several other terms. Whatever its name, there are a host of symptoms: muscle and joint pain, profound weakness and lack of stamina, confusion and memory loss, headaches, poor sleep, even temporary loss of eyesight. There's considerable debate in the medical community about the source and treatment of the illness.

"My best understanding at this point is that it's a form of viral brain damage," said King. "It attacks the immune system. Suddenly your muscles won't respond. Your feet drag, and simply standing becomes a huge effort. Your muscles don't get the signals your brain is trying to send them."

Life changes

All this is unknown to the narrator of "Love and Fatigue" when he flies to Inland University in Spokane, Wash., to teach writing, film and literature in the fall of 1990. While he's never taught these subjects, throughout his career he'd taken on many jobs in foreign environments and figured he was up to the challenge.

But seven months into the job, he walks into a gym to reinvigorate himself after a bout of the flu, only to have his body revolt: "My heart is not playing the game. I give effort another kick, then I'm dizzy ... my eyesight is breaking up and a wave of wooziness is passing through me. The scene, the chromed machines ... has gone kaleidoscopic, shot through with shifting jags of light. The shaking isn't helping."

Soon he's flat on his back in his rented cabin, unable to teach his classes. Most of his acquaintances, uncomfortable with his illness, drop away. A few women, however, begin to confide secrets, all of them revealing sexual abuse at the hands of former husbands and boyfriends. It is his first sense that the new circumstances of his life will create a different dynamic in his personal relations.

That's underscored when he begins an affair with a married woman after he moves to a quiet village in New Mexico in search of a cure for his condition. His weakened state, paradoxically, allows love to enter where it might not have before.

"In time, I come to realize that it is the enforced patience and humility of illness, my new gentleness, that has most drawn Mary to me," he writes. "Her husband's domineering ways had come to offend her ... In health, I might have tried to match, impress, or capture her, and from this she would have shied away. But, in illness, she is mine."

The narrator comes as close as he ever will to his wish to have a family, living with Mary and her young daughter, Zoe, before a temporary remission from CFS allows him to take a teaching position in San Francisco. Then the relationship comes to an end, leaving him with only his job, his dog, Arthur, and an illness that is "something with its own intelligence. It has its personality and I have mine."

System's failure

Though the book is based on his experiences, King calls it an autobiographical novel, both because certain characters have been redrawn and because his memory of events has been damaged by CFS. Moreover, not everything that happened during this period is part of the book, he said: "I needed to find a way to compress the story, and not feel compelled to fill in all the gaps."

There are comic moments: A French woman who has undergone some sort of crude massage therapy is obligated to try the treatment on him, a medical version of a chain letter. There are also not-so-comic moments: the suspicions among some people that he's faking his illness; his sense that his condition is his own fault; and, at one point, suicidal feelings.

Both in the book and in person, King does not mince words about the U.S. health care system. "It's ineffective and wasteful and cruel," he said. "It leaves the weakest and most vulnerable members of society to fend for themselves." He depletes his savings paying out-of-pocket expenses and is forced to have someone sell his apartment and boat back in England to make ends meet.

Had he not believed that his illness was temporary, King said, he likely would have returned to England not long after its onset, where he would have received free care. "I kept believing, against increasing evidence otherwise, that recovery was around the corner ... I was very stubborn."

But he's made peace with his life, he says. He was able to complete his last novel, 2002's "A Girl From Zanzibar," during the worst stages of his illness. And his new book has been getting favorable reviews. Publisher's Weekly calls it a "stunning autobiographical novel." [Review here.] The Times Literary Supplement of London, meantime, says King "fashions a rich, compelling and often wry narrative out of a set of circumstances that could easily fatigue the reader's interest or sympathy."

Now busy on a new novel, King has also worked in film - he was the executive producer of a 2003 documentary on a remote ethnic group in India - and last year he received a fellowship from Amherst College to organize events on campus about international development. He's also working with a national organization that raises awareness of CFS.

"If the book can help people who have struggled with this, that's something I'm very happy about," he said.

 

The above originally appeared here.

 


 

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