Love and Fatigue in America

How to Arrive

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pp. 3-8

It could almost be Pakistan’s North-West Frontier, with the mountains over there, but it’s the Rockies not the Hindu Kush. From this height, the endless forests to the north could be—if I squint to confuse pines with palms—those of Liberia or Sierra Leone. Except there are no dotted village clearings. There are hardly any signs of humans at all, just the one brave, straight road and...

There Is This about Love

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pp. 9-10

Home I: Cabin in Spokane

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pp. 11-12

Got away, got away with it.

I am sitting, this October evening, on the cabin’s rough-wood balcony, my feet up on the rail, watching the day fade over the Little Spokane River below me. Deer mooch in the yard, then leap the fence silently, on a whim. I smoke a rare cigarette and feel content....

The Fall

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pp. 13-16

So, one day a man walks into a gym.

Tuesday, April 23, in fact.1991. An Englishman. The Sta-Fit gym. Spokane, Washington, U.S.A. 8 p.m.

I’m doing all right in this new life, seven months into it. Well, there was that bout of flu two weeks ago, but I’m over that. That’s why I’m here tonight. To get back into shape....

Doctor I: Grumpy

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pp. 17-20

The morning after I collapsed at the gym I am not, after all, better. Two weeks later I am still not better, and it’s time to see a doctor.

The doctor I have in mind is the one closest to my cabin. I’ve passed his roadside sign each time I’ve driven into town. It’s one of those glass cabinet signs that are most commonly found outside Spokane’s startlingly numerous churches, which include the...

Early Days

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pp. 21-24

Interesting this, getting beaten up by a rag-tag gang of misfit symptoms, which is now the content of my days. I struggle to my feet, stagger a few steps, and they knock me down again. There’s the dizziness, and the heart going slow, falling down on its job of keeping the blood rushing around. Then there’s this puzzling refusal of the legs to tense and flex according to instructions. The...

Army I: Krissy

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pp. 25-28

Krissy visits me at the cabin, carrying a pie, which she holds aloft on her finger tips. “OK,” she jokes, “you can have the pie, or me. Or both.” She’s breezy, sexy, reckless, kind. She was once a high jumper and still has a way of moving on her toes as if she might leap at any moment. But I’m stuck flat on the couch and Krissy looms above me, a giantess holding the pie high, like Liberty’s...

Army II: Sucking on the Teat

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pp. 29-32

“Spokane’s sucking on the teat, all right,” says Wayne the Baptist, “sucking on the teat of the military.”

Wayne’s my landlord, my age, glasses, a fussy moustache, soft voice, three kids. He always calls my cabin “the property,” and he has a dozen other properties around the city, inherited from Dad....

America through the Ages

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pp. 33-36

What Is Kind

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p. 37-37

I’ve been learning what is kind. Not supermarkets, it seems. And not action films, or antic comedies. Not TV, for the busy way it switches focus and subject. These send my neurons into disarray.

My injured self rather likes human faces and distant landscapes. Beauty, I suppose. It favors films about slowly shifting relationships that deepen as the story progresses. French films are often...

Doctor II: Happy

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pp. 38-41

“I’ve had it for seven years,” she says, her voice quiet and composed, economizing on energy. “It started when I was thirty-two.” She had been a student in my first quarter graduate seminar on Third World writing. At the time, I was told she was ill but gave it little thought. I had not heard of CFS—and she had looked well. Now we’ve arranged to meet at a pancake restaurant where we’re slumping...

List of Names (incomplete)

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pp. 42-44

Army III: Marianne

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pp. 45-49

Marianne is a vice president of Inland University and it is from her that I learn most about the place I’ve come to.

We meet first at an official dinner, after she’s made her witty after dinner speech, just two weeks before I collapse in the gym. I notice the wit, the poise, the fearless public speaking, the smile, the décolletage....

Reasons

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pp. 50-53

I am looking for reasons. This is my culture: sensible, secular, scientific. I possess the reflexive refusal to accept what is given, and a deep belief in the natural dominion of mind over circumstance. That native human willfulness. My mind has set itself upon this course. If cause can be established, remedies might be deduced and control of my existence reasserted. So, I make notes on my symptoms and...

Danger! Health Care

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pp. 54-57

You need to be healthy to do this. And of sound mind. It is my new job, and is entirely strange to me.

First pile up your bits of paper. On the floor by the couch are the folded sheaves you stuffed into your briefcase each time you left a doctor’s office, hospital, or laboratory, usually stamped with a receptionist’s smile. Next to them are the receipts you stuffed into...

Army IV: Carol

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pp. 58-62

In the weeks after Marianne leaves Spokane, my only human contact is with Wayne, the landlord. But now and again Carol, my former teaching assistant, calls to ask me how I am. In turn, I ask her about her career plans.

Carol was the best student in my graduate literature class. A single mother in her midtwenties, glasses and fussy clothes. Nothing to...

Quietness

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pp. 63-66

The quietness is complete now. And with this solitude grows a low-grade, persistent panic. All those I met while I was well have now left Spokane. The social capital of my healthy life is fully spent. This is my new American life: not much. It’s October and it’s taken me a year to go from everything being possible to nothing being...

Settlers I

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pp. 69-71

The roads are dirt and the houses are made from earth. Most of the inhabitants customarily speak Spanish. Their tiny farms are irrigated by hand-dug ditches that lead water away from the valley’s central river and release it into fields by means of simple wooden gates. It’s a peasant society in all its lineaments, except that many of the farms are neglected and the farmers often have menial...

How to Be Ill

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pp. 72-73

Home II: Adobe

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pp. 74-76

It’s in the old style: mud brick walls a foot thick, viga ceilings, single story, soft edges, painted window frames with the color bleached out by sun. Check out houses like this on the postcards sold in Santa Fe.

Mine is located in a mountain village between Santa Fe, Los Alamos, and Taos. The valley it occupies is shaped like an eye. You enter at the narrow end, through a crack between mesa cliffs, and it flares...

Doctor III: Stress

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pp. 77-78

Doctor III, a polished man, too far away in Santa Fe, asserts that he knows nothing of chronic fatigue syndrome, or myalgic encephalomyelitis, or such things. He wears this ignorance with pride, as if it is a specialized approach with which he combats the follies of fashion. He affects bemusement at the diagnosis and talks...

The Prize

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pp. 79-81

She says, softly into the silence, not looking at me, Zoe playing across the room, she says, thrilling me, “I think I’m a good mother, but I’m not sure I’m a good wife.”

Then Mary lifts her eyes to fix on mine, through the fall of her hair.

Five weeks now since the unexpected knock on the heavy door of the old adobe house. I’d called out, “Yes?” from where I lay on...

Doctor V: Anomaly

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pp. 82-84

Knowing no one, knowing no better, I find him in the yellow pages, under Physicians—Urology.

“This is what I do,” he says without inflection, his forefinger up my rectum, massaging my prostate to milk some fluid from it. “This is what I do all day, every day.”...

Waiting for Mary

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pp. 85-86

Mary’s visits have stopped without warning. One week, two, three, more. Thoughts of her tick away the endless, useless time. “Call!” I instruct her out loud, “Mary, call me!”

One day I run into her husband outside the post office where we all collect our mail—there is no home delivery down the village’s dusty tracks. He has always been friendly and now he asks me...

Luck

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pp. 87-89

Skepticism

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pp. 90-91

I’ve tried to explain my illness to my friend Jack and his wife, Clara. I suspect them of skepticism, and because I admire them it’s important to me that they should believe that my illness is physical and not something psychological that I could overcome with moral firmness. They are on my mind for much of the time it is not devoted to wondering about Mary, but I see little of them....

The Gift of Illness

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pp. 92-95

“God, I’ve missed you,” I say, not meaning to. I hug Mary close, then scoop up Zoe from the doormat.
Mary nods gravely before speaking. Then, “It was necessary for me to do that. To go away.”
“But you’re back now?”
“Yes,” she says, “in a sense,” and withdraws her eyes....

Doctor VIII: Medicine Lite

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pp. 96-97

A real doctor. But also a homeopath.

She’s a nice, cheery woman, short gray hair flopping forward jauntily. Fit. Sexy at sixty. She is delighted to hear of my symptoms. They are apparently terrific symptoms.

“OK,” she says, “let’s see,” and goes to a big book with battered hard covers of a faded blue. “It’ll tell me the remedy,” she explains....

Love at Last: Mary

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pp. 98-102

Mary manages everything.

In summer, after I meet Mary, I leave New Mexico for the first time, making the difficult but essential journey to London to claim in person from the United States embassy there a green card won by me in the American government’s oddly raffish immigration lottery....

Settlers III: How to Be a Communist

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pp. 103-105

You’re like Che Guevara,” Ben says, bless him. “He had asthma, you know, but it did not stop him doing what he believed in. He couldn’t breathe but still went into the hills to fight.”

I am on his white couch in Santa Fe, stretched out with my eyes closed, talking, comfortable in a comfortable room, the afternoon...

Illness as Metaphor

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pp. 106-107

Love at Last: Zoe

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pp. 108-110

What I like best about Zoe at seven is the way she backs away from the cartoons on weekend TV, a bowl of Cheerios in her hands, and transfixed by what she sees, without even looking toward me, or even noticing me, navigates her way back to my knee and sits on it, her bony bottom digging into my thigh, making herself comfortable...

Doctor XI: Not a Real Doctor

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pp. 111-113

Among the not-real doctors are Treeleaf the Reiki practitioner, who moves her hands over me at a safe distance, molding electricity from the air; Mr. Chou, the old Chinese man who has me filling the house with vile smells of stewing herbs; and Lila, the lesbian acupuncturist. Lila is the one who sticks....

Love at Last: Continued

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pp. 114-116

This, then, is why I came to America, isn’t it? To find love and family, the heart of a new life.

After Zoe has been bathed and has been read to sleep, Mary and I sip gin and tonics, mine without the gin. A single sip of alcohol jazzes my neural chemistry into comprehensive disarray, a marker, it seems, for CFS. I lie down on the couch and Mary sits by me....

Skating at Los Alamos

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pp. 117-120

We ice skate at Los Alamos, among the atomic bombers.

The rink is underutilized, like everything there, just some gangly PhDs with their families, the men bespectacled and bearded, no dress sense, the women suburban moms from anywhere. We sing Christmas carols there too, attend the birthday parties of the children....

How to Get a Job

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pp. 121-124

First of all, you don’t tell them you are sick.

This seems fair because you’re getting better, and you expect to be completely well by the time the job begins. You believe this. And, besides, you need the job and there are two hundred applicants.

Mary drives you to Albuquerque airport and puts you on a plane...

Doctor XII: Thumper

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pp. 125-126

My new doctor, I’ll discover down the road from yet another doctor, has a nickname. “Oh, old Thumper,” he will say, a smile spreading. “I know him.” In answer to my unspoken query, he adds, “That’s what we used to call him at medical school, Thumper.”
“Why?”
He shrugs, still smiling. Thumper is clearly the sort of joke you...

Pregnant

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pp. 127-131

Mary says, “I have something to tell you. I know we did not plan for this, but it seems to be true. I’m pregnant. We’ve been taking chances.”

We’re standing in the middle of our living room on a Saturday morning. Zoe is with her father this weekend.

I know what I am supposed to do. I am supposed to show my...

Doctor XIV: Definitely Not a Real Doctor

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pp. 132-133

A Frenchwoman, chic, petite, of a certain age, arrives uninvited at our door. I’ve never seen her before. She has heard about me, she says, and that I am ill. She can cure me. She can’t remember who gave her my name.

This is wonderful.

Herself, she lives by charity in the guesthouse of a rich person, but...

Leaving Love

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pp. 134-136

You should go on your own,” says Mary, the opposite of what she thinks.

I nod in reply, too disturbed in myself to choose words, but also unwilling to contradict her. My departure will end my nervous counting of the days of happiness.

Over a year has passed since I postponed the job in San Francisco....

Home IV: Guesthouse in Sausalito

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pp. 139-141

Sausalito has an excellent climate, an excellent location. If you can live anywhere and have neither roots nor purpose, you might choose to live here.

The town is nestled just across the Golden Gate Bridge from San Francisco, at the bottom of steep hills rising up from the vast lagoon that is San Francisco Bay. After you cross the bridge, coming home...

Work

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pp. 142-145

In New Mexico, I had long lain in my quiet bed. The snows had come and gone through three winters. And through my bedroom window I had countless times watched the ice form on the bush outside and melt again as the day advanced. The woodpeckers had arrived, pecked at the house, and then moved on with the seasons. I’d learned the lumps and rocks of the dirt track to our house, the...

Long Division of Body and Soul I: Strippers

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pp. 146-149

There is an etiquette, she tells the class, in elaboration of her story.

If a regular customer passes her in the street, the man should not ignore her but should offer a polite hello. He also should not ogle her, as if she was still a sex object. He should never approach her as a friend and never, never try to pick her up and make a date....

Lost Love I

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pp. 150-151

They are a family portrait when I arrive back in Santa Fe on the airport bus. Mary has arranged it so, to remind me. There she is, standing, Zoe on one side of her and Arthur on the other. Zoe and Arthur fly at me, not a reservation in them. Mary hangs back, in her way. I’ve been away a month.

In a month, Mary’s phone talk has become more distant, Zoe’s...

The Things They Say

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pp. 152-153

Doctor XVIII: Care

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pp. 154-155

My hopes for the long-term benefits of the enzyme potentiated desensitization treatment for CFS, based on the book my mother sent me from England, persist after I leave the ambiguous care of Thumper in Santa Fe.

I’m accumulating a pile of newspaper clippings and books championing a wide range of theories and treatments. Apart from...

A Treatment:Enzyme Potentiated Desensitization

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pp. 156-157

Take every two months until better, worse, worn out, or broke.

It is quite deliciously inconvenient.

Two weeks in advance of treatment: Stop all other drugs and medications, including aspirin....

Lost Love II

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pp. 158-159

She says, three and a half months after I have left New Mexico, she says, after one of the silences that are so much part of her— that inward distrust of words—she says into my aching brain, as I lie flat on the Sausalito couch, receiver balanced across my face, she says, “I can see another way.”...

Arthur on the Headland

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pp. 160-162

There’s this place I’d like to show you, Zoe. Not many people know about it. It’s where I go with Arthur every day on my way to work. You go toward the city but instead of crossing the Golden Gate Bridge—you’ve seen pictures of that—you go down under it, along some winding lanes that go through an empty area owned by the army. Then there’s a dirt track which leads to a little grassy...

Waitress: Zuleika

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pp. 163-168

The only women I notice these days, in my daze, are waitresses: young American waitresses who cross the radar of my weak attention. Unpromising of course, but with my heart gone and much of my mind too, they look right. In age, they tend to fall between Mary and Zoe, the woman and the child in one. I’m into my second year in California. Mary has long demurred from talking, passing...

Doctor XIX: Theater Doctor

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pp. 169-182

This is the one who knows the one in Santa Fe, and knows his nickname is Thumper, and that he is a joke.

A year and a half after being admitted onto the waiting list to see Doctor XIX, and a year after I first actually see him—by reputation the best specialist in the Bay Area—and in submission to whose wisdom I am, among other treatments, now injecting my own...

Dinosaurs

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pp. 172-174

What did I learn about dinosaurs?

That Mary had a secret one in the Rocky Mountains waiting for her, like a secret lover, for when she finished digging up the Seismosaurus, an animal so big its footsteps were like earthquakes.

I learned that two hundred million years ago is a reasonable stab at...

Long Division of Body and Soul II: Toni

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pp. 175-182

The relationship I can manage in California is the one with Toni. I pay for it.

She starts off well, by saving me. The man she saves me from— Rick, according to his tag—is a staff member at a health club in San Francisco. I’ve been booked in to learn stretching exercises that might ease the pains in my muscles and joints, and he, chest...

Nuts

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pp. 183-185

I am beginning to act strangely. I’m still teaching, inventing new courses and receiving good evaluations from the students, but I exist within an increasing level of distress. My brain, asked to do so much, so publicly, with so little of it functioning, has reached a new pitch of resistance....

Doctor XXI: Not a Medical Doctor

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pp. 186-188

Lying on Lila’s couch, I tell her that though I’ve thought of suicide, I do not believe I will ever actually do it. “It’s just that my brain hurts and I want to stop it.”
“Have you imagined how you might do it?”
“Suicide?”
Lila nods....

Long Division of Body and Soul III:Robin

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pp. 189-193

Robin is rich and she is kind to me. We are kind to each other. She’s my first real friend in Marin County. She goes to Russia, for the opera. To Italy, for the opera. To Santa Fe, for the opera. To France for the food. Owns a boat and expensive cars. Owns a view of San Francisco Bay as fine as Arthur’s. Is divorced. Is athletic. Is lonely, and dissatisfied with it. Is not naturally beautiful, but is...

It’s Over, Boy

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pp. 194-201

This is how the last day goes:

Four a.m.

I’m fed up with my brain. In spite of its exhaustion it’s been up all night, standing guard, alert against the defenselessness of sleep.

Four fifteen a.m.

Turn on National Public Radio in the hope that it will fill my head with something other than my own productions. I’m in...

Doctor XXI: Lila Again

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pp. 202-203

“Well, I did it.” I’m lying down, my eyes closed. “I told them I couldn’t continue.”
There’s a long silence.
“How do you feel about it?”
“Relieved. Upset. It feels inevitable now.”
“Upset, why exactly?”...

Doctor XXII

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p. 204-204

Doctor XXII is the one suggested to me by the departing theater doctor, a name pulled out of the air to get me off the phone. They have little in common. He is a bearded, bulky man working in an East Bay clinic with mostly Hispanic patients. No expensive Italian shoes for him, with the trousers breaking just so over them. He’s a...

California Story

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pp. 205-206

She’s a tall woman, this colleague, and is standing in the doorway of her home, unsmiling.
“Did you hear?” I say, “I had to stop teaching last week.”
“I heard.” She’s offering nothing.
“I reached my limit,” I say.
She takes a breath. “What I heard,” she says, “is that the night you...

Leaving

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pp. 209-211

To Stop

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pp. 212-215

It could not last, of course, my little burst of energy outside of Bakersfield, just a Roman candle in the night. Now, I’m back to driving the way that has evolved for the West’s long empty roads, and my limitations: reclined, limp, eyes defocused to the distance, hands resting in my lap at the bottom of the wheel, breaths taken with a slow deliberation, letting America pass. I’m not expected...

Tehachapi

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pp. 216-218

I’m taking this seriously. I’ve bought the local paper and over breakfast I intend to consider the situation and divine whether or not Tehachapi might be right for me.

The cafe is next to the motel. On the wall are photos of wind turbines on the hills outside of town—the same ones that I had the woman from Zanzibar admire for their graceful intelligence...

Into the Desert

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pp. 219-220

By Mojave, twenty miles downhill, I’m spent, though it’s only 9 a.m. I settle to the straight desert road. First there are fields of mothballed airliners stored where the air is dry and the land has no value. Later there are the long wire fences of shy government installations built back from view, their hidden intentions betrayed only by the warning signs....

Losing It

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pp. 221-222

In Laughlin I’ve discovered somewhere more immediately devastating than brightly lit supermarkets: the gaming room of a casino. If the delicate state of my body’s systems makes me particularly able to detect environments toxic to humans, I seem to have found the most poisonous....

Eureka

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pp. 223-224

Now, Eureka is a serious contender for my new life. This is my second visit. The first was last week on my way up to Montana, and this one is on my way down again. It’s cheap; that’s good. And it’s an old mining town and I’ve come to like old mining towns— I’ve visited them in Arizona, New Mexico, Utah, Colorado, and Nevada—which tend to have some fine brick buildings left behind...

Aunt Bee’s

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p. 225-225

Conversation

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p. 226-226

Vegas

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p. 227-227

Kink in the Road

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pp. 228-229

I’m finding it hard to leave Nevada. Thoughts of New Mexico and the rest of America graze my mind and are deflected. In the past week or two I’ve made excursions into all the neighboring states— Nevada doesn’t have enough roads to fill my time. Some towns in Montana, Idaho, Kansas, Arizona, and Utah have motivated me...

New Mexico

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pp. 230-233

I’ve made a date with Mary’s ex-husband. The one she left for me. Zoe’s dad.

There’s only Arizona to cross. I look for water as usual and find Lake Havasu, The Personal Watercraft Capital of America. Without meaning to, I am driving across London Bridge—the exact stones that I first crossed as a child, with my dad, damply cold in a red...

The Days

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pp. 234-242

The days go like this now, one after the other, not counted. I’m moving east, but not directly. I head north, then south, hanging out for days in anonymous motels when I become too sick to continue. I don’t know how long I’ve been on the road, and I’m reluctant to work it out. Every week or two I use a phone card to check up on my mother in London. I listen to the events of her...

Lingerie

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pp. 243-248

It’s my fiftieth birthday and I’m sleeping on a piece of foam on a cluttered and none too clean floor in Albany. This is not quite what I would have expected for my fiftieth birthday.

When I open them, my eyes are crowded by the backs of canvases leaning against a wall, and a wood floor speckled with drops of oil...

At Home

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p. 251-251

How to Make a Life

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pp. 252-255

First, do not hurry. You cannot seize life; you must wait for it to come to you. This is also the way to befriend dogs and children. While being patient, and refusing to flirt with hope, you make a life without others. It’s not a good life, just a life. The only requirement is that it must be rigid enough to support you. Every morning, from the first day of your arrival, you take exactly the same walk...

The Cost of Illness

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pp. 256-257

The cost of my first fifteen years of chronic fatigue syndrome was one million six hundred and twenty thousand dollars. Trust me; I’m an economist.

Or, the equivalent, say, of a million dollar house, a Bentley Continental, and a forty-five-foot sailing yacht equipped for circumnavigation....

Lost and Found

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pp. 258-261

It’s pleasant here.

When I lie down—as I have for much of the time since I arrived here—it is on my bed with its views of the garden and the birds, or on the daybed downstairs, or on the couch in the upstairs study, or on the futon in the guest room, where I keep the TV. It’s a house...

Doctors

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pp. 262-263

The idea of an illness, and individual health, being inseparable from all existence is generally too fancy for doctors, who have five minutes to listen to a stranger, make a decision, and write a prescription or order up a test. Though CFS is only one of many illnesses of similar complexity—and overall health is always of this complexity—doctors are forced by circumstance into a simpler...

An incomplete list of the ingested and tested, compiled from leftover medicine bottles and scraps of medical documentation (no need to read)

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pp. 264-265

The Benefits of Illness

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pp. 266-268

Permission to Be Human

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pp. 269-272

America is at war again, in Iraq again, as it was when I first fell ill. The reservists have it worse this time, the families split longer and hurt deeper than the tearful ones I first saw in Spokane. The chance of death and injury—receiving and inflicting—is greater and the justifications for all this suffering more spurious. The damage of...