Encounters with the Invisible

4. Encounters with the Invisible

Dorothy Wall opens her book on her personal struggle with Chronic Fatigue Syndrome (CFS) with a moving scene from March 1996.  As she lies in bed with her husband, after he gently caresses her head and body in a welcome but only temporarily successful attempt to relieve some of the pulsing aches that grip her muscles, Wall gains comfort from the knowledge that her brain is filled with clouds of tiny point-like lesions, unidentified bright objects (UBOs) that are perhaps the reason that in spite of her education and verbal prowess as a writing consultant and English professor she finds herself repeating the words of a slow moving documentary about Einstein, words that she finds unintelligible in the midst of her brain fog.

In the introduction, the history of the disease is outlined.  In June 1985 internists Paul Cheney and Daniel Peterson asked the CDC to investigate an outbreak of flulike illness in a cluster of some ninety patients in Incline Village, Nevada.  In the shadow of AIDS, there little attention was paid to this condition as it emerged and spread throughout the United States in the late 1970’s and early 1980’s.  One of the few exceptions was Anthony Komaroff at Harvard Medical School, who said “The fact that you could get a common virus and still be ill a year later – that was striking.”  Wall and others link this illness, finally named by the CDC in 1988, to the mysteriously mild polio outbreak in LA County in 1934, and London’s Royal Free disease in 1954, as well as George Beard’s 1869 characterization of neurasthenia, a fatiguing illness that has been interpreted by others as a precursor to modern stress-related conditions.  CFS appears to involve the nervous system, the endocrine system, and the immune system.  The disease is usually characterized by three phases, an ‘acute, flulike phase’ that leaves the patient for years in the ‘triad phase’ exhausted, overwhelmed with fatigue and confusion or brain fog and “a body that hurts all over” (Wall).  Finally, the patient enters the third ‘dynamic injury phase’ in which brain functioning has improved and the pain has subsided to a lower level, but mental or physical exertion can bring about a relapse.  The severity of the illness and debilitation typically cycles over a period of many years.

Wall describes how she first ‘fell into illness’ in June 1980, shortly after completing her MA in Creative Writing and before taking the Oral exam, while struggling as a single parent to support her 8 year-old daughter.  She had never fully recovered from a bout of mononucleosis following her divorce in 1978. Through the years until 1986-1987 she worked as a part-time lecturer at schools and colleges around the San Francisco Bay Area while at the same time suffering recurring bouts of flulike symptoms including fevers, swollen glands, sore throats and other aches and pains.  With her new partner, Bill, she was then able to travel to Venice.  She remembers saying to him in 1989 “I’m still exhausted much of the time, but I don’t get sick anymore.”  However, as she was soon to learn, increasing her level of activity was to have drastic consequences.

Wall quotes from Virginia Woolf, continuing the essay “On Being Ill” cited in Chapter 2: “But of all this daily drama of the body there is no record.  People write always of the doings of the mind.”  The narrative of Encounters with the Invisible goes back in time to September 1995.  After 15 years of struggling with CFS, Wall embarked on an ill-fated business trip to New York to conduct interviews for a book, although she knew she is beginning to get sick.  While there, she lost her ability to speak, reaching a state of physical exhaustion.  Staggering into her HMO doctor’s office in California, so weak she had to leave in a wheelchair, Wall was frustrated by her doctor’s skeptical gaze when her temperature and other vital signs appeared normal, ordering a multitude of fruitless diagnostic tests as well as the antibiotic Wall needed.  Wall bemoans the doctor’s ignorance of the studies mounting by the late 1990’s to show clusters of CFS around the country, population-based surveys that indicating a prevalence of 200-400 per 100,000 (figures now are as high as 1-3%, based on the CDC website).  But the illness is invisible to nearly all the tests modern medical science has to offer, yielding its secrets of fatigue, brain fog, excruciating muscular aches and pains, a sore throat or other flulike symptoms only to the subjective experience of the patient.  For 15 years, Wall cycled through bouts of illness and relative functionality, “passing” as a well person most of the time.  She wonders if thousands of her fellow sufferers also stumble through their lives, unseen, succumbing to the “pressure of skepticism and the enticement of normalcy” and remaining “silent in the face of disbelief and ignorance.”  Returning from the doctor visit that day on October 2 1995, she crawled into bed, welcoming a bowl of soup offered by her daughter Lisa who was back from college, and believing that with a couple weeks of rest she would “be able to carry on.”

After four weeks in bed, Wall fell into silence, able to communicate only by scribbled notes to her husband Bill and her daughter Lisa, who were to become her caregivers in her journey through illness.  “Silence is a measure of extremity, of how far removed I am from normal, daily life, from the ease and spontaneity of ordinary exchanges.  Removed from a physical place in the world.  Removed from language.”  (Wall)  By her bedside, as a reminder of the normality to which she longs to return, she kept a picture from June 1995 showing her, Lisa and Bill at a friend’s wedding, joyfully raising a glass of wine to the camera, their arms around each other’s shoulders.

Wall justifiably bemoans the focus in contemporary medicine on ‘objective’ imaging technology and lab tests that legitimize one illness like Multiple Sclerosis (MS) in favor of another, such as CFS, which has only subjective symptoms.  At the same time, she longs for the objective confirmation of the distress of CFS, latching her hopes on speculative research findings such as changes in SPECT imaging, and the UBO lesions found in structural MRI.

Wall struggled with the difficulty of expressing her pain in language.  She became irritated when her daughter, sisters, and friends suggested specialists, support groups, complementary medicine.  She felt like Philoctetes, abandoned by his fellow sailors on an island, to lament his pain alone; or Christina Rosetti, dying of cancer in such agony, alone in her house in London, that her neighbors pleaded with her brother to do something to stop her cries so that their children would not have to hear them.  “This is what it must be like to be dying,” she said to Bill, as he helped her to the bathroom.  Her weakness filled her with fear.

As an English scholar, Wall was reluctant to acknowledge the limitations of the magisterial power of words.  She did not wish to believe that language could fail her.  “Tell me I’ll be OK,” she whispered to her husband, appreciating his reply, “You’ll get better, you’ll get better.”  “I dwell alone, I dwell alone, alone,” she quotes Rosetti, saying that “Her poems sprang from her aloneness, a place teeming with language and noise.”  According to the poet Richard Wilbur, “Good poems release us from inarticulateness, which is a great misery.”

Wall first heard of chronic fatigue syndrome in 1989, when her friend Susan handed her a clipping from the San Francisco Chronicle, guessing this was what she had.  Until then, she had called it her “recurring virus” which no doctor believed was real.  Wall had asked her doctors about the Epstein-Barr virus she carried, but they said it was normal.  Only in 1986, six years into her illness, did she meet a doctor who acknowledged the possible existence of postviral syndromes, but knew very little about them.  Wall felt satisfaction identifying her symptoms in the 1989 description of chronic fatigue syndrome, and validation from the fact it was now recognized by the Center for Disease Control (CDC).  At that time, her health was much improved, and it was only in the years ahead when her disease lashed back that she first became aware of the controversy fueled by that name.

The name Chronic Fatigue Syndrome angered sufferers because of its seemingly psychogenic implications, and ever since it was adopted by the CDC patient groups have lobbied and advocated for a name change.  At a patient conference in 1988, Seymour Guttman, an epidemiologist, presciently suggested renaming the group (and illness) Chronic Fatigue Immune Dysfunction Syndrome (CFIDS) which is Wall’s preferred terminology throughout her book.  In the UK and Europe, the term Myalgic Encephalopathy (ME) is used, and Canada has adopted CFS/ME.  Outside the US, the diagnostic criteria center on post-exertional fatigue or malaise and not so broadly the fatigue itself, making this a narrower and less nebulous cluster of symptoms and patients.  At present, the CDC is reluctant to change the name since there is no evidence of a particular biological etiology, although it is evident that the immune system, the endocrine (hormonal) system, the hypothalamic-pituitary axis (HPA) responsible for the stress reaction, and the nervous system, in particular the autonomic nervous system, are all involved in the condition, and there is more tentative evidence of a role for some infectious process possibly involving both viral and fungal agents.  I think that the problem is in part the fact that both doctors and patients wish there were a simple, linear route of causation and hope to discover one.  The whole philosophy of modern medicine and the Western cultural approach to health and disease are ill equipped to deal with either chronicity or multisystemic, multiply caused conditions.  Perhaps CFS simply represents a common way for the body to break down early following certain patterns of lifestyle and environmental impingements, including (but not limited to) multiple infections, trauma and stress.

Wall talks about the strain her illness placed on her marriage, and how she and Bill found ways to reconnect over the comfort of watching videos together, particularly movies about family and food, and cooking shows which gave her unusual sensory gratification during the acute phase of her illness. 

Wall wonders whether her earlier promiscuity, between her two marriages, might have left her with viruses that led to the illness she experiences.  For years she believed that she was experiencing the repercussions of mononucleosis (Epstein-Barr) just like as a teenager and in her early 20’s she had repeated herpes sores after a first kiss.  Perhaps her liaison when she was in her 30’s with a tired professor who personally identified with her fatigue symptoms was a precursor or cause of her disease?  When she first met her future husband Bill, they were both on a schedule of early nights, so fortunately their common fatigue did not get in the way of dating.  She cites an interesting study showing that the drug interferon, used in the treatment of hepatitis C, mimics the symptoms CFS.  Interferon is part of the body’s response to viral infection, and this suggests that in CFS the body might be over-responding to viruses it has encountered in the past.

Wall experiences profound ambivalence about her need to stay home, as a result of her illness.  Her mother’s visit reminds her of the constraints of domesticity.  Her mother always seemed happy in her world of daughters, flowers and doilies, whereas Wall railed against the suburban constrictions of her first marriage, when she was left to tend her daughter and home alone and carless day after day in the Beverly Glen Canyon neighborhood outside Los Angeles.  She read Germain Greer and Betty Friedan, finally rebelling against this enforced domestic life and returning to her planned career of teaching in the Bay Area which she had never even started before her marriage.

She remembers a college English class in which she protested the professor’s dismissal of Christina Rosetti’s limited and uninteresting life, defending her inner life as an engaging substitute.  Lying groggily in bed, unable to walk more than a couple of houses from her front door on a good day, she finds this defense of Rosetti hard to live up to.  She feels deeply frustrated by “the conversations of old age: zucchini softer please, and could you tuck the blanket over my feet?”

Ironically, her self-imposed exile from the world resembles the cure for neurasthenia advocated by the infamous 19^th Century physician S. Weir Mitchell.  A former army surgeon, he thought that women suffered overexertion from their attempts at work, intellectual and social roles outside the home.  Charlotte Perkins Gilman wrote that he advised her to “Live as domestic a life as possible.  Have your child with you all the time…  Lie down an hour after each meal.  Have but two hours’ intellectual life a day.  And never touch a pen, brush or pencil as long as you live.”  After trying his cure unavailingly for several months, she got out of bed, got a divorce, and went back to her life of writing, speaking and political activism for women’s rights.  She continued to complain of mental exhaustion (“my mind like a piece of boiled spinach”) but quit the cure.

Wall wishes that she could slip the confines of her home, and yearns nostalgically for hikes along the Strawberry Canyon trail in the hills above it.  Research shows that most patients with CFS experience extreme fatigue after exercise, their pulse rate rising precipitously from small amounts of exertion.  Nevertheless, exercise can be helpful for a subset of the patients, according to Dr. Anthony Komaroff.  Within the CFS community, there is a move to make postexertional fatigue a major criterion, as it is in Europe and Canada.  For Wall, the most she could do in February 1996 (a few months after first taking to her bed) was an hour or two of light activity around the house.  “It’s maddening to think I’ve become the enforcer of Dr. Mitchell’s stultifying regime” she rails.

Wall quotes from Dr. Margaret Cleaves’ 1910 ‘Autobiography of a Neurasthene’ “I knew neither peace nor comfort night nor day.  There remained all the usual pain of nerve trunks of peripheral nerve endings, the exquisite sensitiveness of a body, the inability to bear a touch heavier than the brush of a butterfly’s wing, the insomnia, lack of strength … the inability to use my brain at my study and writing as I wished.”  She feels a great deal of sympathy and fellow feeling, recognizing her own symptoms in this account.  However, at the same time, she acknowledges “The American neurologist George Miller Beard solidified the term “neurasthenia” as a clinical entity in his 1869 article, “Neurasthenia, or Nervous Exhaustion.”  Beard defined neurasthenia as “an impoverishment of nervous force,” a definition that for all its scientific trappings rings with vitalistic echoes, as in weak chi or not enough prana.” 

At a time of rapid advances in medicine and physiology, prior to the emergence of psychiatry as a separate discipline and Freud’s popular account of psychosomatic symptoms as arising from unmet libidinal urges, Beard briefly rescued two whole pages of symptoms from the no-man’s-land between the physical and the psychological, with its stigma of mental illness, giving them instead the credo of his newly named disease publicized in his 1881 book American Nervousness.  The list included “insomnia, flushing, drowsiness, bad dreams, cerebral irritation, dilated pupils, pain, pressure and heaviness in the head, noises in the ears, mental irritability, tenderness of the teeth and gums, nervous dyspepsia, pains in the back, heaviness of the loins and limbs, shooting pains, cold hands and feet, pain in the feet, special idiosyncrasies in regard to food, medicines, and external irritants, local spasms of muscles, convulsive movements, especially on going to sleep, cramps, a feeling of profound exhaustion.”  His theory was that modern civilization demands more ‘force’ than some people have, and the weakest give out, like a faint, flickering lightbulb.  Using the metaphors of the age, steam power, thermodynamics, electricity, and economics, Beard claimed that certain people were apt to overdraw their balance and ended up ill as a result.  He treated his patients with rest (for the women), outdoor exercise (for the men), and galvanic currents applied to the eye sockets, temples, neck and spine.  Once, according to Wall, he discovered that the battery was dead but the cure was nonetheless successful, so he added “definite expectation” to his list of curative factors.

Beard believed that ultimately medical science and physiology would yield physical evidence for the process and mechanisms of neurasthenia, and in fact made claims (later disproved) regarding lab results including changes in the tissue of the neurasthenic nervous system observed under the microscope.  Beard’s fellow practitioner and friend Rockwell wrote that Beard possessed “a settled conviction that the surest way to establish the truth, as he understood it, was boldly and persistently to reiterate it.”  He was successful for a while, as  neurasthenia became all the rage from about 1890-1910, affecting up to 10% of both males and females of the middle classes, including no few doctors, and when the social workers noticed them large numbers of the poor and sick.  It swallowed up the prior categories of hysteria and hypochndriasis, echoing George Cheyne’s 18^th Century ‘English Malady’ that he believed was endemic to the upper classes, attributed to leisure, refined sensibility, and excess. 

Wall notes insightfully that what happened instead of Beard’s prediction was that certain other illnesses became discernible and separated from this general class of malaise (including diabetes, MS, lupus and Lyme disease).  The broad conglomeration of symptoms, evident since ancient times and noted by Dr. Dedra Buchwald in a 2000 year-old Chinese medical text, became instead subjected to the ravages of Freud’s psychosomatic explanations, the pharmaceutical industry’s promotion of antidepressants, and severe criticism from the growing feminist movement.  Only cultural historian Tom Lutz notes that the rejection of neurasthenia by doctors because of the diversity of patients and symptoms included under this heading is actually no more logical than trying to find a complex explanation for a complex, multiply caused illness.  However, while Wall welcomes a re-evaluation of neurasthenia and its links with CFS, most patients seek to distance themselves from this now obsolete and dubious past.

“Dear Madame,

I try every remedy sent to me.  I am now on number 87.  Yours is number 2,653.  I am looking forward to its beneficial results.”  (Mark Twain, in Albert Bigelow Pain’s Mark Twain: A Biography, Vol. III Part 2).

By February 1996, about four months after getting sick, Wall found she was able to walk a few houses up and down her street and appreciate her neighbors’ gardens.  Trying to regain a measure of normalcy, she started talking with a neighbor.  Somehow she mentioned that she had CFS, and promptly the neighbor turned expert advisor, pointing out a book in Cody’s and recommending an acupuncturist.  When Wall said that she already tried that, the neighbor blurted “There’s help out there if you want it,” promptly ending the conversation.  Most people, Wall notes, become instead “lovingly anxious” recommending treatments, being conciliatory, even talking in a different voice to the sick person.  Her husband Bill was not immune from this, trying to help with magnets, Udo’s oil, various treatments pushed on him by others as soon as he talked about his concern over his wife’s illness.  Wall says she has been “astounded and touched, annoyed and angered, by the pervasive urge to provide a solution and the fervor of each person’s belief in his or her chosen panacea.”  She acknowledges in herself the same urge to help others by pitching a favorite remedy, such as vitamins, calcium, herbs, and quercetin, but notes that this was not what she really wanted when she was really sick.

She recollects a touching moment when her neighbor Nancy, a midwife, walked in, to keep her company.  Previously, Nancy had tried to help by sending little notes with lists of remedies.  This time, she goes up to Wall, who is lying sick in her bed, and gently massages her sore feet without saying a word.  She herself is suffering from a hot flush, and she places Wall’s cold feet against the warm skin between her breasts.  “This is what I need.  No talking, no thinking, just the feel of body heat infusing my veins like new blood, warming me.  The heat of her body, the ice of mine, an intimate exchange of temperatures as we try to right these careening bodies,” recollects Wall.

Wall notes the 1816 invention of the stethoscope, that cartoon symbol of the medical profession, as the turning point at which doctors began the movement from listening to the patient, to listening to the patient’s body instead.  Confronted with a large-breasted young woman and wanting to avoid putting his ear directly to her chest, Lannec recalled the parlor trick of putting a stick to one’s ear as somebody scratched the other end with a pin.  “It occurred to me that this physical property might serve a useful purpose in the case with which I was then dealing.  Taking a sheet of paper I rolled it into a very tight roll, one end of which I placed on the precordial region, whilst I put my ear to the other.  I was both surprised and gratified at being able to hear the beating of the heart with much greater clearness and distinctness than I had ever before by direct application of my ear.”  Doctors learned to diagnose pneumonia, bronchitis, tuberculosis, based on fine distinctions in the sounds they heard inside the chest, anticipating modern developments that allowed them not only to hear but see inside the body.  The stethoscope, with its dual function of distancing the patient (expending with need for intimate physical contact) and bringing closer the strange interior of the patient’s body, with its almost inhuman sounds and murmurs, became the insignia of the medical doctor.

“What clues there are to this disorder lie presently in listening carefully to these patients…” (Dr. Paul Ceney, in Osler’s Web: Inside the Labyrinth of the Chronic Fatigue Syndrome Epidemic).  Wall recounts a litany of not being listened to by doctors, from the early beginnings of her illness in the 1980’s, through the 1990’s and to the present day.  She cites a 2002 article in The Journal of the Amercian Medical Association claiming that the rise in chronic illness “will irreversibly alter the traditional doctor patient relationship,” only to close with the words “shared expertise with active patients.  Professionals are experts about the disease and patients are experts about their lives.”  This is ironic, because it fails to acknowledge the simple fact that patients are experts about their bodies, a fact doctors persistently ignore, turning instead to endless lab and imaging results, while willfully contradicting the likelihood that patients are more knowledgeable about their own particular disease than a tired general practitioner many years out of medical school.  Recent years have seen a rise in Narrative Medicine, whereby doctors are trained “to recognize, absorb, to interpret and be moved by the stories of illness,” by Dr. Rita Charon at Columbia University and others.  However, Wall doubts the virtue of overloading young medical trainees with the literary reading this entails, and wonders if it will really stem the tide of the medicalization of illness.  Wall is particularly offended by the way psychiatrist Arthur Kleinman in his book The Illness Narratives twists a patient’s story of a postinfectious illness resembling CFS into evidence for depression related to the social tensions in her life.

Wall recounts her own tale of falling sick at a time when she was, ironically, commuting around the Bay Area teaching story-writing.  She tells of a particular class in the Napa Valley which required her to drive hours from her home and other jobs, in order to moderate the sharing of personal narratives that would probably never be read or heard elsewhere by a group of retirees.  She recollects the little Russian woman who, in her nineties, walked to her home two blocks away to bring Wall a cup of tea for her sore throat, the retired police officer who told a story about stopping a speeding mother with a diaper emergency, and the Eastern European man who poured out a prose poem about imprisonment in a free-writing exercise using the word ‘stone’ that left the entire class speechless. 

In the 1980’s, Wall went to doctor after doctor, telling a young intern she thought she had a recurring virus, like her teenage herpes, only to be ‘educated’ about how there are hundreds of cold viruses out there and she had simply caught another one.  One doctor asked if she could run up a flight of stairs, and when she replied that she could if she absolutely had to he said she was fine.  She was reminded of the 19^th Century attitude towards hysterics, who could reputedly run fine if there was a fire.  But at the time, like her doctors, Wall believed that she would just get better.  She became angry with a boyfriend who thought she might be seriously ill, citing to him the normal results of all her blood tests.  She herself had to learn to listen to her body.  “Listening to the body is not the instant, facile undertaking New Age promotors would have us believe.  Without a larger framework of knowledge, the body’s cues can be heard yet misinterpreted, the incongruities explained away or kept below the level of consciousness.” (Wall).

As an example of successful listening, Wall mentions Dr. Allen Steere’s discovery of Lyme disease in 1975, by listening to the patient Polly Murray and her family, who had been suffering from neurological symptoms, swollen joints, rashes and fevers for years, dismissed by other doctors as signs of hypochondria or depression.  After listening attentively to the patient’s description of her symptoms and their history, the doctors were finally able to isolate the pathogen causing the disease.  Wall suspects that human herpesvirus 6 (HHV6), similar to herpes simplex 1, and 2 that causes Epstein-Barr or mononucleosis, might play a role in CFS.  Over 90% of adults show antibodies to it, suggesting it is normally harmless, yet many CFS patients show reactivation.  Dr. Anthony Komaroff believes that it may play a role in CFS as well as in MS.

“Who says I am obliged to be what you think I am?  Or even what I think you think I am?  Or even what I think I am but sincerely wish I weren’t?” (Brooke Kroeger, Passing: When People Can’t Be Who They Are).  Wall discusses the years of passing as a well person, while she was working as an itinerant teacher and later as she built her editing business that would enable her to work from an office near her home.  In February 1992, she visited a doctor who was an expert on CFS.  They talked about her lab results (mostly normal, except for low IgG4, a common finding in CFS).  Finally, she asked about her chances of recovery.  “You’ll always have this illness,” replied the expert.  Wall no more wished to hear these words than all the other doctors’, who had told her over the past decade or more that there was nothing wrong with her.  In her personal narrative, she always imagined a time in the future when she would refer to “those years in the 80’s when I had that virus.”  She says, “As someone raised with that ramrod-straight Protestant ethic of self-reliance, that training in stoic perseverance, I found the idea of “coming out” as a seriously ill person hard to swallow.  All evidence to the contrary, I believed I could get better, believed I could soldier on with only small, private adjustments.  The truth about my body I held at arm’s length, like a disturbing object I could neither let go nor accept.”

“Avoiding disclosure allows claiming other identities than illness” (Kathy Charmaz, Good Days, Bad Days).  Investing others with the story that nothing is wrong makes them the carrier of the reality the patient can no longer maintain, and according to Charmaz, “may also provide a time buffer during which a person can begin to adapt to change.”  Wall kept one teaching job for the UC Berkeley extension during the early 1990’s, and recalls a class in Dwinelle Hall through the spring of 1992 when she only really felt well enough to teach for one of the ten weeks.  Browsing through the student evaluations at the end of the semester, she was deeply hurt by one that said “She seems low energy.”  Unlike comments from grumpy students disparaging her teaching, this one she destroyed and kept from her administrators.  “It pains me now to think how unspeakable those words were to me, how hard I worked to prevent their utterance.  Those words stung not only because they exposed my illness.  They revealed that all my efforts, all my performances, my willingness to continually hurl my ill self into the world, all that was not enough.  This illness was becoming stronger than all my impersonations, all my willpower” (Wall).

Another turning point was the moment a friend referred to her as disabled.  Marcy, a woman with a disabling back injury, was lying on the carpet when another friend mentioned something about being disabled, and Marcy said, “Oh, Dorothy’s disabled, too.”  Wall had thought of herself as ill, exhausted, “run down”, but never as disabled.  She later asked Marcy how she worked with her disability, and Marcy revealed that she let people know on a needs must basis.  Another friend, Myrna, a lesbian, advised that “It’s always best to be fully who you are.”  But one’s race, ethnicity, and sexual orientation can be sources of pride.  “The stigma of illness carries a particular tinge, reminding us of our bodily failings, from which… no one is immune.” (Wall).  Sociologist Erving Goffman talks about “spoiled identities” that fail to conform to society’s ideal and carry stigma.  He writes, “An individual who might have been received easily in ordinary social intercourse possesses a trait that can obtrude itself upon attention and turn those of us whom he meets away from him, breaking the claim that his other attributes have on us.”  Perhaps this is why Wall kept her invisible illness secret for so long, hiding it even from close friends and colleagues.

Wall returns to the story of Philoctetes, Sophocles’ character waylaid on his way to Troy with the Greeks when he was bitten by a water snake.  The wound became putrid and ulcerated.  It never healed, marking him with a constant sign of his otherness.  His pain was unbearable, and his shrieks and cries unbearable to his companions, so they abandoned him on the island of Lemnos for ten years and came back only because they needed his magic bow to win the Trojan War.  “This is where they abandoned me, alone with my wound… Can you imagine what it was like for me, waking up here after they’d gone?  Getting up that day?  Imagine the tears, the cries of anguish.  Picture me, seeing the ships I had travelled with all gone and not a soul here: no one to help me; no one to ease the weariness of my affliction.” Philoctetes laments.  This isolation from society is often the greatest burden of disability, a prison often disguised as an asylum or sanctuary, like leper colonies or “cities of the damned”.  Wall feared that if she disclosed her illness then, like Philoctetes, she would be left behind, abandoned by the company of the healthy.  It is easy to see these fears confirmed by everyday interactions, for example when she walked out after her long illness and greeted the neighbor in her garden, only to be brushed off by a suggested remedy when she longed for ordinary conversation.

Wall finds she is guilty of the same behavior, shrinking away from those more deeply wounded than her.  In summer 1993 she finally capitulated to the suggestions of friends and doctors, and went to a CFS support group.  After lugubrious carpooling arrangements to share the driving with the aim of staving off fatigue, arrangements of which Wall wanted and took no part, the group met in a dismal student apartment in Berkeley.  On the futon couch, a feverish man wailed in despair “I don’t think I can go on,” tugging his leather jacket around him.  A young, pony-tailed woman curled under an Afghan reached her blanket over him, as a petite speech therapist continued her monologue on healing spaces.  Wall was hoping to find patient empowerment, instead what she found was “The disabled trying to save the drowning.  Guilt ridden, I stayed longer than I should have.  I didn’t go back.”

“I could paint it many ways.  I only know that I was packing my body each day into sweaters and bright scarves – a crucial accessory for the pale-faced ill – the way a teenager crams herself into pants one size too small out of an intense need to have them fit.  It was what I needed to do.  As long as I could get away with it, I would.  In the end it was my body that spoke, no longer able to keep up my double life.  It was my body that brought an end to my time of passing.” (Wall).

Wall jokes about “the imagination of this bug”, which was how she thought of her illness, always giving her new symptoms.  In March 1996, shortly after her husband Bill left on a business trip, she was overcome with excruciating, prickling pains all over her body.  Frightened, she called a specialist, who thought she might have a magnesium deficiency.  Skeptical and reluctant to revisit the hospital, she tried a hot bath instead, her daughter Lisa, also scared, helping her and gently massaging her oversensitive shoulders.  Finally visiting the hospital, a doctor asked her to breathe into a paper bag and then asked if it was the same feeling.  Furious at this suggestion she was hyperventilating, Wall demanded the blood tests for electrolyte levels.  But already her symptoms were subsiding into a cold, that her daughter had a few days earlier, but it triggered in Wall’s “deranged body a deranged response, as if my nerve endings are frayed.”  Bill came home to this new drama of illness, and Wall felt abandoned by his coldness, fantasizing about calling her sister to pick her up.  Instead she reassured Bill in the morning, “I’m getting stronger every month, even with this setback.”  Trying to buoy her own support.

Faced with this profusion of symptoms that will not go away, described sarcastically by the famous 19^th Century neurologist Jean-Martin Charcot “L’homme du petit papier” patients are scared, and doctors are frustrated.  Given the history of recorded outbreaks and epidemics, from LA County in 1934, the Royal Free in London in 1955, Punta Gorda, Florida in 1956, each affecting about 100 or more patients, Wall wonders how physicians have remained unaware of the possibility of post-infectious syndromes. Dr. Anthony Komaroff explains the medical orthodoxy of doctors trained in the 1960’s and 1970’s, whose education never included the idea that a virus could cause long-term infection.  It was then the belief that the virus was ultimately eliminated from the body.

Wall quotes a poem by Emily Dickinson: “Pain – has an Element of Blank - / It cannot recollect/ When it begun – or if there were/ A time when it was not.”  By November 1996, a year after taking to her bed, Wall has become accustomed to her routine of sickness.  “Days meld, time is reduced to getting up for toast and lying back down and up again for soup.  Time loses its urgency, its workday, efficient meaning.  Dates and hours become an artificial concept concocted by a feverish world I’m no longer part of.”  Sociologist Kathy Charmaz calls this “Immersion time,” when illness becomes a new way of life rather than an interruption or an intrusion.  Wall believes that this restful time with its “anesthetized calm” is healing, like being in a coma.  She works a couple of hours every day, reading client manuscripts in bed, and for that short time can bring her thoughts together to give them feedback on the phone or in writing.  Driving turns out to be a much more difficult task and one that she regrets attempting.  Her brain cannot handle the speed, multiple cues, noises, traffic and pedestrians on the short one mile hop to her office to pick up the mail.

Studies show that people with CFS have an “intellectual scatter” of functions, with focal deficits in visual or verbal processing but not usually both.  Even with normal intelligence and memory skills, they are often distractible, and far less able than healthy adults to multitask by, for example, identifying letters at the same time as listening to random words through headphones.  Wall gains great comfort from the finding of UBOs, the impenetrable words of a scientific journal paper playing through her mind, “MR abnormalities consisted of foci of T2-bright signal in the periventricular and subcortical white matter and in the centrum semiovale.”  At least three studies have replicated these results, and one found a correlation between the number of punctuate (point-like) lesions in the brain and the physical deficits of the patients in the study.

More than that, though, Wall finds that her personality has changed.  “There is also the matter of the “not me” that has taken up residence in the altered ecology of my nervous system.  This “not me” is teary and labile and weak and distracted.  She can’t speak up, can’t calmly assert herself and her needs.  She cries at commercials, cringes at loud noises.  Who is this person who needs to be driven places, who can barely coordinate the task of paying her bills, dependent and deranged?”

She contrasts this with conditions that somehow seem to circumnavigate this core, inner self.  “I’m still me,” said Christopher Reeve after his paralyzing accident.  “I’m still here,” said Ram Dass after a stroke left him paralyzed and with speech difficulties.  Wall quotes from neuroscientist Antonio Damasio’s book The Feeling of What Happens: “When we discover what we are made of and how we are put together, we discover a ceaseless process of building up and tearing down, and we realize that life is at the mercy of that never-ending process.  Like the sand castles on the beaches of our childhood, it can be washed away.  It is astonishing that we have a sense of self at all, that we have – that most of us have, some of us have – some continuity of structure and function that constitutes identity, some traits of behavior we call a personality.”  Wall says, “I’ve felt chastened, as ill people do, by how vulnerable the self is to its neurotransmitters and hormones.”  She feels thankful that for her this mechanism is a “potent force for health” meaning, I think, that the changes in her personality that made her rest actually helped bring about her slow healing.

Accumulating medical and scientific evidence points to abnormalities in the immune and endocrine systems of CFS patients.  In particular, levels of a protein which is part of the response to viral infection, RNase-L, are elevated, and this protein takes a slightly different, lighter molecular form in 72% of people with CFS as compared with only 1% of healthy controls or those with other illnesses such as fibromyalgia and major depression.  There is a down-regulation of the HPA axis, producing hypocorticosolism that might explain the fatigue, myalgia and sleep disturbances in CFS, which are similar to those experienced by people with adrenal insufficiency.  This HPA down-regulation might also increase the immune reaction.  Wall acknowledges that many of the studies of CFS are preliminary, the results come from relatively small numbers of subjects, and the relative lack of funding in the field has contributed to the slow progress in understanding the disease.  Wall notes that while medical language “flattens and erases the lived complexity, the uniqueness of each individual illness,” it also “gives authority, shape, realness.  It assuages skeptical minds and brings our suffering into relief, makes it apparent…  These studies form the beginnings of a dialogue between the suffering patient and science, the beginnings of a shared vocabulary.”

In January 1997, Wall’s mother suddenly died.  Unable to go down there, Wall listened on the phone to her three sisters and other family members singing hymns around her deathbed and at the funeral.  Wall recalls, “My mother, an avid gardener, had had at her command this rangy, lyrical vocabulary of flowers.  When we strolled through the neighbor hood, as she loved to do, she’d name each plant, bending to touch or pointing a finger or tipping her eye.  My mother knew something not just about flowers but about a certain rhythm or pace of life that allowed for the time to pause and look and attach a name to what she saw.”  In the deep moments of her illness, Wall gained comfort from flowers brought to her by her sister, Suzanne and her husband Bill.  Months after her mother’s death, her friend Susan brought a book of photographs of natural objects by Andy Goldsworthy and Wall was elated by this “trip to a museum” in the comfort of her living room.  She speculates, “A thing of beauty is something that is not final.  You can return to it again and again and still be absorbed, drawn into its details and shadows and questions…  It provides an escape from the need for safe harbor, assuring a world not encased or limited by those needs.  It holds promise of something more to come.”

In March 1997 Wall “defected” from her HMO to the comfort of an acupuncturist office, where she was greeted by a woman who is “a cross between a cherub and a Buddha” and spends time looking at her throat, probing her shoulders, and prodding needles into her earlobes.  “Her fingers, playing my wrist like the keys of a flute, measure pulses I can’t feel.  She stares blankly into space as she does this, and I imagine her envisioning my body as an illuminated chi flowchart – moving fine here, some congestion there, kidney, liver, lung.”  Wall found the treatments exhausting, but persevered, she says, “if only because this woman speaks a language of the body that makes sense to me.  She nods knowingly at my symptoms, doesn’t seem to find unusual the intractable exhaustion, the constantly abraded throat, the monotony of my complaints.”  Wall purchases herbs and supplements to treat her perimenopausal symptoms, allergies, and sleep difficulties, spending thousands of dollars on this “biweekly ritual” over the next several years.  She eventually accepted that “this is the premium I have to pay for someone who speaks a language that takes in the whole, mysterious elusive phenomenon of the body.”

Unlike her mother, patiently naming the flowers, and the acupuncturist, slowly taking in all her symptoms, the medical establishment remained entrenched in its tug of war over the name of CFS with patient advocacy groups, stating that there is not enough scientific knowledge concerning the pathopysiology of the illness, a fact the patient groups blamed squarely on the circular lack of research funding that resulted from the name.  Wall rejoinders that “We shouldn’t have to exhibit a biomarker or pathogen, or die, to be taken seriously.  Those of us with CFIDS and other possibly overlapping chronic illnesses – Gulf War syndrome, chronic candidiasis, multiple chemical sensitivity, fibromyalgia – should be seen as what we are: emblems of the limits and weaknesses of a pathology-oriented, reductive bioscience.”

In parallel with her reluctant move away from the establishment and toward a complementary alternative, Wall discovered in April 1997 that her office building had been sold.  This loss of her independent identity outside the home grieved her more even than the loss of her mother, because she had never imagined losing this future although she had not set foot there for over a year and a half by this time. 

It was only when her grandmother died in 2001, age 102, that Wall learned the story of the Pierce Arrow, a formative tale in her family’s history.  Her grandmother was determined to go to her oldest daughter’s graduation at Northwestern in 1941.  A single parent, she packed her younger son and daughter onto the train where they ate sandwiches from a straw basket and slept sitting up.  With no money for the return journey, she purchased the Pierce Arrow with a jumpseat and a glass partition, drove it back to Santa Barbara and sold it to pay for the whole trip.  Wall recollects this grandmother feeding her a pock-marked cinnamon bun from which all the ants had been removed, her grandmother so determined that the ants would not win.  As a small child, she loved hearing her grandmother and her father read the story of The Little Engine That Could, with its feminine-eyelashed train repeating to itself “I think I can, I think I can,” as it chugged up the mountain, and “I thought I could, I thought I could,” all the way down.  Wall says, “It’s the tinge of masochism turned into a higher calling that in retrospect makes me cringe.”

Seen from the outside, as in Isaac Bashevis Singer’s story “The Washerwoman,” the self-sacrificing determination of the Protestant work ethic seems pathetic.  Singer describes an old woman who walks an hour and a half to and from her home, collecting linens from the Jewish household and bringing them back, determined to carry her burden in order not to be a burden on others.  “But there was in her a certain pride and a love of labor with which the Gentiles have been blessed.”  One bitterly cold winter day she arrives, shivering, and the young Jewish son watches, with a mix of horror and respect, as she steps back out into the frost under the heap of washing.

Wall recollects a TV show in November 1997 about the heroic disabled, the “supercrips,” that threw her into rage and tears.  The show followed a deaf musician, a blind lawyer, and a paraplegic journalist – the latter struggling in his wheelchair to cover the fighting in Afghanistan.  Wall wrote an angry letter to the producer, about the “simplistic, triumphalist coronation of our cultural myth of can-do optimism and rugged individualism… clichés casting the disabled as moral lessons… poster-child images as unrepresentative of and oppressive to the disabled as glossy, unblemished models are to women.”  She wrote about the luck and community support necessary to accomplish the feats shown in the show, and how such courage obscures the need for better public policy and funding.  At the same time, she longed to be one of those success stories.  “Sociologist Arthur Frank calls this culturally preferred illness story, braced by optimism and denial, the “restitution plot.”  In this story, illness is followed by a return to health, or at least a praiseworthy defeat of limits.”

Weeks later, in a Christmas Letter, Wall’s father reminded her of the story of The Little Engine That Could.  The letter brought her to tears recognizing the distance she had traveled since those times.  A positive acceptance of limits, hard to attain as it is, actually helps the chronically ill gain more control over their lives, according to psychiatrist Arthur Kleinman.  After the show, Wall also learned that the paraplegic journalist later saw his trip as foolhardy, coming close to death trying to change a catheter tube in unsterile conditions, and being abandoned for hours in his wheelchair amid a crowd of the poor and destitute, suffering from hypoglycemia and dehydration.  Wall recalled a hiking trip in Tahoe with her parents and older sister in 1957, when she got tired and enjoyed resting in the woods on a cold granite rock, only to be chivvied up by her father exactly 10 minutes later.  The rest of the family left and she promptly followed suit, catching up with them and skipping ahead saying “I’ve got a second wind,” to her father’s joyful chuckles.  This story brings home, though, how lost Wall feels now in her own wilderness of illness, her path no longer following the rails set down by her family.

In April 1998, Wall’s daughter Lisa was diagnosed with candidiasis, by Wall’s acupuncturist.  She had been sent to see her for her repeated colds and fatigue.  Lisa improved after she was put on an “anti-yeast” diet – no alcohol, yeasted breads, or sugar.  While Wall feared her daughter might be vulnerable to CFS through “bad” genes, contagion, or exposure to environmental stresses, she kept this to herself in the face of her daughter’s worries, reassuring her that an ascetic diet would do the trick.  It was years later, in 2001, that Wall put herself on the same “anti-yeast” diet and she too experienced a reduction in her sore throats, colds, fatigue, allergies and PMS symptoms.  This was regardless of the fact she asked her physician for a throat swab to test for yeast, which came back negative, only to find out years after that that in fact he had ordered a test for bacteria (strep) instead and she did have Candida.

Wall wonders about the impact of the c. 100,000 new chemicals that have been pumped into the environment in service of the ‘excess’ of our technological society, and their effects on increases in CFS, candidiasis, lupus, MS and other autoimmune diseases.  She cites a study in which a number of people submitted themselves to tests, finding in their bodies large amounts of heavy metals, long-chain polycarbons and other contaminants like DDT, some of them supposedly banned in this country.  Wall’s memories of summers in her mother’s garden are tinged with the sweet smell of melianin, a substance later scheduled by the FDA for cancer warnings but taken off that list as a result of industrial pressures.  Wall mentions the impact of antibiotics, which increase the risk of fungal infections such as candida when ingested.  A little known fact not mentioned in Wall’s book is that by far the largest volume of antibiotics in this country are used not by medicine but by agriculture, and are liberally sprayed on fruit crops such as apples and pears to combat fire blight.  Most apples grown in this country have been treated with antibiotics.  Almost all honey (unless it carries an organic label) comes from bees treated with antibiotics, and retains a significant residue.  Western medical science disputes the link between Candida and CFS or other illnesses, considering Candida a part of the normal flora of the gut unless it ‘mushrooms’ out of proportion or in cases of lowered immunity as in AIDS patients, or patients undergoing chemotherapy.

When Wall tries to explain to an aunt and uncle that people who have been sick as long as she has rarely get “completely better” they insist, “oh, you never know,” as if accusing her of a lack of optimism.  Her sister plans her wedding near Wall’s house, to her delight, only for Wall to find that attempting shopping for a gift exhausted her.  In August 1998, almost 3 years after getting sick, Wall finds herself still looking at the world mostly through her bedroom window.  She cites the debate across centuries between Wordsworth, who laments “The world is to much with us” and Denise Levertov, who retorts “The world is not enough with us.”  Ideally, Wall sees herself on the side of wishing to be with the urban, active, drive-ridden world, but finds that her foggy brain constrains her to Wordsworth’s bucolic idyll.  Wall is impatient, but finds that her illness has taught her a patience greater than she is.

Studies show that 10% of CFS adult patients make a “substantial” recovery, and a higher (80%) of children do.  However, when explored in depth it was found that many of the children who had recovered turned out to have made significant lifestyle changes, such as accommodating by reducing their level of activity and working on flexible schedules.  Wall herself acknowledges that in 1989, nine years after first getting sick, she would have declared herself to be “largely recovered.”  Nevertheless, six short years later, she was struck again by illness.  There are few longitudinal studies charting the longterm progress of CFS, and the adjustments people with it make to aid their functioning in life.

Wall talks about return, in a number of senses. She discusses Freud’s “return of the repressed” in the context of acknowledging the existential limits she is pit against by her illness.  She likes sociologist Kathy Carmaz’ observation that “The problems with which ill people struggle are often existential; their solutions are often organizational.” 

Wall reflects that she has never followed the advice of a fellow CFS sufferer, to take a pre-emptive rest before reaching a state of complete exhaustion.  She does not believe that her personality has changed.  And yet, she no longer wishes to return to the picture she cherished, from the summer of 1995.  The one showing her, Lisa and Bill cheeriliy raising a wineglass to the camera.  Instead, she remembers how that moment was snatched from a relapse following her trip to Costa Rica.  At the time, she was as much pretending as really achieving that state of picture-perfect health.  In August 1999, she notes, “I’m older, more gray hairs, more sags and bags in the expected places.”  Instead, she says, “I’m trying to return… to a participation that can be sustained.  If the sharp fracture with a previous life that took place that fall is to be redeemed, this is how.  By building this new life on solid ground.  By creating a life that supports healing.”

Wall acknowledges that her perspective has shifted.  She sees herself more than ever before “connected” to the suicidal young man at the support group years before, because she recognizes the “thin and precarious surface we glide along each day, and the ease with which an intact self can be shattered.”  She realizes how, in the face of all this pain, the self can be in Elaine Scarry’s words “unmade”.  She quotes cancer survivor Arthur Frank: “The realization that obsessed me during chemotherapy was how easily every strength I thought I had could be reduced to weakness.”  This appreciation of the body’s fragility makes Wall anxious, but it also makes her “a better listener to other people’s stories of suffering, someone who won’t turn away…  better able to meet and appreciate each moment on the way.”

Although she doesn’t explicitly discuss this, I wonder what role writing her book Encounters with the Invisible, conceived in 1997 and completed in 2005, played in this tide turn in Wall’s relationship between her illness, and the body’s intimate pain, on the one hand, and her public persona on the other.  Wall sees illness as an “outpost” not a “journey”.  Yet she describes her experience as a “pattern of ups and downs, exacerbations and rebounds, with a steady movement toward that place called “better”.”

Ten years after getting sick, in 2005, Wall is well enough to go out of the house twice a week.  She is delighted by her daughter’s marriage, and the birth of a grandson in the intervening years.  The CDC allotted extra funds for CFS research, without changing its name, yet public recognition for the illness has increased, and pharmaceutical interest has been ignited in the search for a genetic marker and perhaps a cure for this illness that affects, according to recent surveys, up to 3% of Americans.  Wall urges her fellow sufferers to become involved in self-advocacy, by connecting with support groups both in the community and on the internet.