Reviews

Sick and Tired: An Intimate History of Fatigue,
by Emily Abel

Reviewed by Dorothy Wall
for healthrising.org

 

What happens when a patient’s ongoing fatigue is misunderstood and dismissed, and she happens to be a medical historian? We get a smart new book, Sick and Tired: An Intimate History of Fatigue.

In 1993, after six months of treatment for breast cancer, including surgery, radiation and chemotherapy, Emily Abel experienced profound fatigue that did not go away. Her oncologist reassured her: “A year. It will take a year to feel like your old self.” That year passed, and another, and another, and Abel was not her old self. She reduced her teaching load at U.C.L.A., rested in her hotel room during academic conferences, and tried to keep up appearances. Friends told her she looked fine, colleagues tired of hearing her concerns. She was baffled by her continued exhaustion, wondering if it was somehow psychosomatic, and galled by the “celebratory breast cancer culture, publicizing survivors engaging in physically challenging activities.”

Frustrated, Abel decided to investigate fatigue herself. Fatigue, of course, is a huge and unwieldy subject. There’s no agreed upon definition, umpty-ump causes–from anemia to multiple sclerosis to traumatic brain injury–and many types. There’s the fatigue of ordinary life and pathological fatigue; acute and chronic fatigue; mental, physical or emotional fatigue. Any book on fatigue is an ambitious undertaking.

Abel’s stands out as one of the first to tackle the nature and representation of fatigue itself, presenting an absorbing, incisive cultural history. What is this amorphous thing called fatigue? How have medical and cultural ideas of fatigue evolved? Interwoven with her own fatigue story, she elucidates this history and how our understanding of fatigue may, finally, be changing.

To those with contested illnesses, Abel’s story is all too familiar. It’s not surprising that as she searched for understanding, she turned to the literatures on pain, and on other fatiguing illnesses, such as ME/CFS and Gulf War Syndrome, to find parallels with her own experience. As she observes, “...there are no diagnostic tools for fatigue. I thus faced the same issue as those suffering from pain and various contested diseases–without medical confirmation, we cannot convince others (and sometimes even ourselves) that our problems are real.”

As she delved into the historical and personal literature of fatigue, Abel found three broad themes: the denigration or dismissal of subjective knowledge, the knowledge that each person has of his/her own body; our cultural emphasis on productivity and the work ethic, in which a person’s personal worth is often tied to what she/he can produce; and the dominance of triumphal narratives, in which “with enough grit, hard work, and determination, individuals can overcome any adversity.” Obviously, these cultural narratives work against any chronically ill person whose reports of fatigue are not backed by laboratory findings, whose productivity is limited, and who doesn’t get all better.

Abel describes the broad arc of the fatigue narrative, beginning with its first appearances in the medical literature in the mid-1800s, along with an emerging focus on neurasthenia, industrial fatigue, and battle fatigue. Close on the heels of diagnosis came the cures, everything from the rest cure to exercise, from home-made nostrums to amphetamines. By the twentieth century, vaccines and antibiotics bolstered the belief that disease could be overcome, and increased the marginalization and disparagement of those who didn’t recover. They must not want to. They’re just depressed.

The parallels with ME/CFS run throughout Abel’s book, from the poor fit between chronic illness and our western medical system, to the isolation of the ill when those around them fail to understand their condition, to how gender, race, or socioeconomic status can impact disease perception. Her section on ME/CFS mostly gets it right, sketching the ways a psychiatric interpretation of ME/CFS has harmed patients and hindered research progress. She mentions the 2011 PACE trial that touted graded exercise therapy and cognitive behavior therapy for CFS, and the study’s debunking by journalist David Tuller and others; the Institute of Medicine’s updated clinical case definition for ME/CFS in 2015; and recent patient activism, such as Jennifer Brea’s video, Unrest.

Like so many stories of illness, the fatigue story is one of myth-busting, fueled by committed patient and medical advocates, the disability movement, and a growing body of new research. After almost two decades of struggle and confusion, Emily writes: “Finally I learn that as many as 25 percent of the women who undergo surgery, chemotherapy and radiation for breast cancer experience fatigue at least ten years after the end of treatment.” Once Abel understands the long- term nature of her fatigue, and the likelihood that a full recovery may not happen, she can finally listen to her body and do what’s best for her. “Once I abandoned my quest for a cure, I realized that my primary task was to learn how to manage exhaustion in a society that places a high value on personal energy and productivity.”

While the fatigue story is still in its infancy, Abel claims that “medicine has begun to place fatigue on its research agenda, slowly and somewhat haltingly acknowledging that the condition is far more serious and prevalent than widely assumed, highlighting the difference between chronic and acute fatigue, and searching for both diagnostic criteria and treatments.” Let’s hope so. Abel’s book should help.

***

Originally published in healthrising.org, August 16, 2021
Copyright © 2021, Dorothy Wall. All rights reserved.

The Pain Chronicles: Cures, Myths, Mysteries, Prayers, Diaries, Brain Scans, Healing, and the Science of Suffering,
by Melanie Thernstrom

Reviewed by Dorothy Wall
for CFIDS Link

 

Melanie Thernstrom’s important new book on chronic pain comes with a warning: The tough-it-out approach to persistent pain is likely to make things worse. If not treated, chronic pain can progress. There is, writes journalist Thernstrom, “increasing evidence pain eventually rewrites the central nervous system, causing pathological changes to the brain and spinal cord, and that these in turn cause greater pain.”

This insight is a game changer, initiating a major paradigm shift. Pain specialists now believe that chronic pain is not merely a symptom of some other underlying condition–multiple sclerosis, arthritis, back injury–but a disease in itself. Yet despite current research, the idea of pain as disease rather than symptom has not gained widespread acceptance. Some studies suggest persistent pain affects up to 70 million Americans or as many as 1 in 5 people, and costs the economy as much as $100 billion a year in disability and lost productivity. You’d think these numbers would be a wake-up call. In fact, we have a long way to go with regard to public and physician understanding of this insidious disease, or adequate investment in pain research. Sound familiar? For the millions with neuroendocrineimmune (NEI) illnesses such as ME/CFS (myalgic encephalomyelitis/chronic fatigue syndrome), fibromyalgia, multiple chemical sensitivity or Gulf War syndrome, the pain story is deja vu all over again. A poorly understood condition disproportionately affecting women, that is often dismissed or under- treated despite the fact that early interventions are associated with better outcomes. And because pain is often an ingredient of NEI illnesses, for those in this community, Thernstrom’s book has double relevance.

In 1998 at age 29, following an energetic swim across a Nantucket pond, Thernstrom, a New York Times writer, began experiencing pain in her neck and shoulder. It would be the beginning of a life colored by pain. Thernstrom intertwines a wide-ranging exploration of the history and science of pain and its depiction in literature, philosophy, religion and art, with her frustrating search for treatment and relief, throwing in a story of love lost and found for good measure (the bad guy is irritated with her limits; the good guy buys her three hundred boxes of ThermaCare heat pads because they’re on sale). Along the way she investigates opioids, placebos, positive thinking, stress, and everything in between. She visits pain clinics to interview leading experts and the patients they treat, and tells wrenching stories of the people for whom pain is not an abstract idea but daily reality. One patient describes pain as the punishing “shadow” that follows her every move. A woman named Dani tells of chronic pain’s destructive effects: “You lose friends; you lose co-workers; you lose everything....There was a different Dani before the injury.”

While there are multiple causes of chronic pain–muscular, nociceptive (pain caused by tissue damage or inflammation) and psychogenic (physical pain exacerbated by emotional factors)–the focus today is on nerve pain. “Much chronic pain is now understood to be neuropathic–a pathology of the nervous system originating either in damage to the central nervous system of the brain and spinal cord or in damage to peripheral sensory nerves.”

But the mysteries remain. Physical evidence of damage doesn’t necessarily match symptoms, making pain notoriously subjective. You can have a normal MRI but still have pain, and vice versa. Complicating matters further, “pain presents the same symptom regardless of how it is generated or what type of pain it is, yet different conditions require different treatment.” Then there’s the slippery matter of definition. Is pain a perception? Biological event? Cultural phenomenon? All of these? Thernstrom deftly illuminates these complex issues.

Brain imaging has opened a world of insight into brain function, yet finding the neural components of pain–or sadness, beauty, joy–is still beyond our instruments. Says one pain researcher Thernstrom interviewed, “We naively believed that pain is simple–it hurts or it doesn’t hurt–so there should be a single brain state we could see every time someone is in pain. But what we’ve stumbled into is the discovery that there’s a relative universe of hurt–that hurting is an immense, rich, and varied human experience, associated with an unknown number of possible brain states.”

This is not a tale of victorious science, vanquished disease. Sadly, the heroic narrative of science overcoming disease may not be available to the millions in chronic pain, at least not yet. When asked how her pain is, Thernstrom says, “Better than it used to be. Bearable, almost never unbearable. But still always there.” She struggles to accept her pain, not wanting it to define her. “On the one hand, I want to be satisfied with the progress I’ve made....On the other hand, to fully accept it feels as if I am settling for a pained life. I want to keep a candle in the window of my mind for my pathography to have something besides a philosophical ending.”

The Pain Chronicles is an ambitious and needed book, the most thorough and up-to-date treatment of this elusive, too-long-ignored, devastating condition, written with insight and grace. It will comfort and inform those who suffer pain, and encourage compassion in those who don’t. For those with ME/CFS or other NEI illnesses, it will be both a familiar story and enlightening new ground.

***

Originally published in CFIDS Link, September 2010
Copyright © 2010, Dorothy Wall. All rights reserved.

Crawfish Dreams,
a novel by Nancy Rawles

Reviewed by Dorothy Wall
for Lambda Book Report

 

Told with humor and grim panache, Crawfish Dreams is the story of the Broussards of Watts, California, for whom the 1965 riots were not TV spectacle, nor a brief footnote to history, but background to a life. We met this high-spirited, fractious Louisiana Creole family in Nancy Rawles' first novel, Love Like Gumbo, narrated by lesbian daughter Grace. In Crawfish Dreams the Broussards' lives tumble forward into the Reagan '80s, when the dispossessed were expected to be entrepreneurial, and Grace has become one voice in a multi-voiced story.

This time the seven siblings are grown—"two unattached, three unemployed, four unholy, two unashamed, seven unhappy, and one quite unwell"—and bent on finding refuge in less infamous corners of the Los Angeles basin. If their diaspora is weak on ambition, never stretching beyond Long Beach, the mother Camille, still rooted in Watts, has an ambition that is monumental: to make Watts a home.

When she puts out the call for delivery help for her fledgling meat pie business, children steam in from every corner of L.A.: unemployed Raymond from Long Beach, lonely Grace from Santa Monica, religious Louis from Crenshaw. They grouse, quarrel and resignedly serve their mother's dreams.

It would be an ordinary plot (stoic mother tries to sustain her family) if it weren't layered with other tales of disintegration—the decimation of a community and an earlier way of life—and with all the depressingly valiant individual struggles that go on when communities fail. The old hold on to the young, the young set out to preserve the old, all struggling fitfully under the same collapsed structure. Grandson Nicholas battles hostile police and alcohol; homeless son Joseph sleeps outside the boarded-up supermarket; Louis is about to divorce his wife; Raymond beats his son; daughters Grace and Yvette defy their mother and long for romance.

If it sounds gloomy, it's not. Rawles' pithy humor and the quirky vitality of her characters keep the story airborne. Here's neighbor Pep driving Camille, whom he's sweet on, in his heavily dented Ford pickup truck to retrieve her grandson Nicholas, just released from prison: "Pep struggled to gain control of the lunging demon. He jerked the wheel from side to side, an angler with a big one. 'Say your prayers!' he shouted. A sixty-two-year-old black man from Watts, he was already five years past his life expectancy."

Like the family it portrays, the novel is noisy and loosely hinged, with sons, daughters, neighbors and priests nudging each other aside to tell their version of events. While Camille plots ways to gather her children around her table, they convene in Anthony's kitchen and conspire to get her out of Watts, each one trying to foist her on another sibling. Exasperated kids crisscross L.A. in their exhaust-spewing orange Datsun or rusty blue Toyota, perpetually leaving and returning to the home with shuttered windows and dark, screened-in porch, "an improvement suggested by the 1965 Watts riots."

After the collapse of the meat pie venture comes the hot sauce idea. When that falls apart, the restaurant, "Camille's Creole Kitchen," takes hold. It rises, sputters, falls and rises again, rather like families and neighborhoods. That Camille's dreams are modest and extravagant at the same time is a comment on the odds she and her family are up against.

"'I've been having crawfish dreams,' she told [Pep]. They were sitting at her kitchen table cleaning crawfish heads.

"'What do crawfish dream about?' he wanted to know. 'Being stuck in the mud?'

"'Getting clean without getting cooked.'"

There are shortcomings. The satiric humor can reduce minor characters to caricature—as when the black Republicans suddenly appear to fund Camille's business—and prevent major characters from being more dimensional. And when so many characters vie for the story's voice, each one sometimes feels thin. But Rawles' sharp wit and her endearing if grouchy characters always motor things along.

The home-spun recipes—for Watts Riots Capon in Red Wine Sauce or Lester Pep's Bread Pudding with Rum-Soaked Apricots and Raisins—scattered through the book put a charming gloss on a story about much more than food. In Rawles' capable hands, cooking becomes healing art, capitalistic venture and family glue all in one. The feel-good crowd and young Republicans will both be happy.

***

Originally published in Lambda Book Report, April-May/June-July 2003, Vo. 11.09-11.11
Copyright © 2003, Dorothy Wall. All rights reserved.

Hallucinating Foucault,
a novel by Patricia Duncker

Reviewed by Dorothy Wall
for The San Francisco Review

 

In the middle of Patricia Duncker's arresting debut novel, the 22-year-old narrator, obsessed with the brilliant, schizophrenic writer Paul Michel, stands in front of the French asylum where the writer is incarcerated. "Hospitals are strange, intermediary zones where sickness and health become ambiguous, relative states," the narrator observes. These slippery zones, where gender, sanity, and knowledge are all challenged, fascinate Duncker. She's particularly intrigued with the love that exists outside bourgeois morality and traditions: homosexual love; the uncanny, guileless love between child and adult; and especially the intimate, passionate exchange between reader and writer.

The young narrator, never named, is pursuing a doctorate at Cambridge, studying the fiction of Paul Michel (Duncker's fictional rendition of Foucault, created in the image of the man Foucault said he wanted to be: an attractive fiction writer, irresistible to the boys). The narrator is an ordinary guy, with a regular roommate named Mike and parents who gladly send along checks. One day he lifts his head from his texts long enough to spot a woman in the rare books room of the university library.

"She was bony and quick in her movements, skinny as a boy, oddly dated in her manners, like a mid-19th-century heroine." The narrator calls her the Germanist, and they fall into an affair through which she remains strangely aloof. The real affair of the book, between the reader and writer, is yet to come. Acting as subtle guide, the mercurial Germanist leads the narrator beyond his study of texts to Paul Michel's letters and ultimately challenges him to abandon the dusty caverns of the Cambridge Library altogether and go find his writer.

The heart of the book is its central section, set in the lunatic asylum at Clermont-Ferrand. The images of the mad Paul Michel (Paul-Michel was Foucault's actual first name) meeting his reader in the cloistered gardens of the asylum obviously electrified Duncker, and the charge is passed on to the reader. The elegant Paul Michel is a brilliantly realized character, both mad and sane, charming and tormented.

"He was alarmingly thin. We smoked another cigarette. Then he said, 'Who are you?' I hesitated. I said, 'I'm your reader. Your English reader.' His whole body flared for a second, like a dormant fire, touched by the wind, then went out into utter darkness. He sat frozen. Then he said, clearly, slowly, and without any gesture of menace beyond the lowering of his voice, 'Get out. Before I kill you.'"

The deceptively simple plot, in which the narrator engages ever more intimately with his writer, unfolds as a complex structure of fluid identities and interlocking narratives--an impassioned exchange between multiple readers and writers. Paul Michel's letters reveal that he and Foucault (yes, the historical Foucault appears as a character) carried on an intense affair, through letters and through their texts. "We read one another with the passion of lovers. Then we began to write to one another, text for text." The Germanist is animated by her own ardent and hermetic love affairs with writers. Duncker's novel itself is an imaginative engagement with Foucault's ideas about knowledge, sexuality, and madness, and Duncker's reader is drawn into the conversation.

Indeed, this idea that everyone's talking with one another is both the book's strength and its shortcoming. Too often, the characters sit around and discuss ideas. As a result, their emotions, particularly the narrator's, are sometimes unconvincing. The narrator remains an oddly flat character, a vehicle for the passions of others.

But when Duncker leads us into the asylum, into Michel's mad, complicated mind, and to the story's surprising end, her book comes powerfully to life. Her writing is romantic, dark, disturbing. Hallucinating Foucault is ultimately a unique love story, a search for that writer every reader longs for: the one who, as the Germanist says, gives both "trouble and pleasure."

***

Originally published in The San Francisco Review, January/February 1997, Vol. 22.1.
Copyright © 1997, Dorothy Wall. All rights reserved.