My ideal life, at my age now, because of my chronic illness, would be to sit on a porch overlooking water and to watch the sailboats and
know that my cute sailor of a husband would be home soon to take me to a movie
and to lunch. ( We go to morning movies as I feel better in the morning.) Then we would meet with
our friends and sing praises to God and study His word encouraging each other
until the Lord returns. The only job
that I can do now is prayer, so I would do that.
Maybe God would make my pen to be one of a skillful writer. That would be a miracle! The following is the story of Laura Hillenbrand
the author of “Seabiscuit” and “Unbroken.”
She had a sudden onset of CFS. As
a result she became a writer:
A Sudden Illness --
How My Life Changed
by Laura Hillenbrand
We
were in Linc's car, an aging yellow Mercedes sedan, big and steady, with
slippery blond seats and a deep, strumming idle. Lincoln called it Dr. Diesel.
It was a Sunday night, March 22, 1987, nine-thirty. Rural Ohio was a smooth
continuity of silence and darkness, except for a faintly golden seam where land
met sky ahead, promising light and people and sound just beyond the tree line.
We
were on our way back to Kenyon College after spring break. Linc, my best
friend, was driving, his arm easy over the wheel. My boyfriend, Borden, sat
behind him. I rode shotgun, a rose from Borden on my lap. Slung over my arm was
a 1940s taffeta ball gown I had bought for $20 at a thrift shop. I was 19.
The
conversation had dropped off. I was making plans for the dress and for my
coming junior year abroad at the University of Edinburgh. My eyes strayed along
the right shoulder of the road: a white mailbox, the timid glint of an
abandoned pick-up's tail-light. The pavement racing under the car was gunmetal
gray. We were doing 50 mph or so. A balled-up bag from a drive-through burger
joint bumped against my ankle.
A
deer.
At
first, he was only a suggestion of an animal, emerging from the darkness by
degrees: a muzzle, a sharp left eye. Then the headlights grasped him.
He
was massive -- a web of antlers over his head, a heavy barrel, round haunches
lifting him from the downward slope of the highway apron. Briefly, his
forehooves rested on the line between the shoulder and the highway. I saw his
knee bending, the hoof lifting: he was stepping into the car's path.
In
the instant that I spent waiting for the deer to roll up over the car's hood
and crash through the windshield I was aware of my body warm in the seat,
Linc's face lit by the dash, Borden breathing in the back, the cool sulfur glow
of the car's interior, the salty smell of the burger bag. I watched the deer's
knee and waited for it to straighten. I drew a sharp breath.
The
bumper missed the deer's chest by an inch, maybe two. The animal's muzzle
passed so close that I could see the swirl of hair around his nostrils. Then he
was gone behind us.
I
blinked at the road. My eyes caught something else. A brilliant light appeared
through the top of the windshield and arced straight ahead of the car at
terrific speed. It was a meteor. It burned through the rising light of the
horizon and vanished in the black place above the road and below the sky.
My
breath escaped in a rush. I turned toward Linc to share my amazement. He was as
loose as he had been, his eyes slowly panning the road, his long body unfolding
over the seat. I looked back at Borden and could just make out his face. They
had seen nothing.
I
was about to speak when an intense wave of nausea surged through me. The smell
from the bag on the floor was suddenly sickening. I wrapped my arms over my
stomach and slid down in my seat. By the time we reached campus, half an hour
later, I was doubled over, burning hot, and racked with chills. Borden called
the campus paramedics. They hovered in the doorway, pronounced it food
poisoning, and left.
I
fell asleep sitting up on my bed, leaning against Borden's shoulder. In the
morning, my stomach seethed. I walked to the dining hall and sat with Linc,
unable to eat. In my history seminar, I drank from a water bottle and tried to
concentrate. After class, I walked to my apartment and heated some oatmeal. I
swallowed a spoonful; nausea rose in my throat and I pushed the bowl away.
In
the next few days, everything I ate made my abdomen balloon. I radiated heat,
and my joints and muscles felt bruised. Every day on the way to classes, I
struggled a little harder to make it up the hill behind my apartment.
Eventually, I began stopping halfway to rest against the trunk of a tree.
One
morning, I woke to find my limbs leaden. I tried to sit up but couldn't. I lay
in bed, listening to my apartment-mates move through their morning routines. It
was two hours before I could stand. On the walk to the bathroom, I had to drag
my shoulder along the wall to stay upright. Linc drove me to the campus
physician, who ran test after test but couldn't find the cause of my illness.
After three weeks of being stranded in my room, I had no choice but to drop out
of college. I called my sister and asked if she could drive me home to
Maryland.
I
sat in the doorway of the apartment while Borden and Linc packed my sister's
car. As they pushed the last of my belongings into the back seat, a downpour
broke over them. We pulled out, and Kenyon was lost in a falling grayness. I
turned to wave to Borden and Linc, but I couldn't see them anymore.
My
mother's house was a dignified Colonial that sat back from the road, behind a
pine tree that had been mostly denuded by Hurricane Agnes and an anemic cherry
tree that would soon collapse onto the den. In the back yard stood a hemlock
that had been missing its upper third since my brother and I accidentally set it
on fire. Inside, the house was a warren of small rooms that had suited our
two-parent, four-kid, two-Collie family when my parents bought it, in 1971. My
father had walked out in 1977, the elder collie had died three days later, and
the house had gradually emptied until my departure for Kenyon, which had left
only my mother and my cat, Fangfoss.
The
sun was setting as we pulled up to the back door. I walked upstairs and lay
down in my childhood bedroom, which overlooked the back yard and the charred
tree. The next morning, I stepped on a scale. I had lost 20 pounds. The lymph
nodes on my neck and under my arms and collarbones were painfully swollen.
During the day, I rattled with chills, but at night I soaked my clothes in
sweat. I felt unsteady, as if the ground were swaying. My throat was inflamed
and raw. A walk to the mailbox on the corner left me so tired that I had to lie
down.
Sometimes
I'd look at words or pictures but see only meaningless shapes. I'd stare at
clocks and not understand what the positions of the hands meant. Words from
different parts of a page appeared to be grouped together in bizarre sentences:
'Endangered Condors Charged in Shotgun Killing.' In conversation, I'd think of
one word but say something completely unrelated: 'hotel' became 'plankton';
'cup' came out 'elastic.' I couldn't hang on to a thought long enough to carry
it through a sentence. When I tried to cross the street, the motion of the cars
became so disorienting that I couldn't move. I was at a sensory distance from
the world, as if I were wrapped in clear plastic.
I
had never been in poor health and didn't have an internist, so I went to my old
pediatrician. I sat in a child's chair in a waiting room wallpapered with
jungle scenes, watching a boy dismember an action figure. When my doctor drew
the thermometer from my mouth, he asked me if I knew that my temperature was
101. He swabbed my throat, left for a few minutes, and returned with the news
that I had strep throat. Puzzled by the other symptoms, he prescribed antibiotics
and suggested that I see an internist.
The
doctor I found waved me into a chair and began asking questions and making
notes, pausing to rake his fingers through a hedge of dark hair that drifted
onto his brow. He ran some tests and found nothing amiss. He told me to take
antacids. A few weeks later, when I returned and told him that I was getting
worse, he sat me down. My problem, he said gravely, was not in my body but in
my mind; the test results proved it. He told me to see a psychiatrist.
I
went to Dr. Charles Troshinsky, a respected psychiatrist whom I had seen when I
was fifteen, after my high school boyfriend had died suddenly. He was shocked
at how thin I was. I was just under five feet five, but my weight had dropped
to a hundred pounds. Dr. Troshinsky said that he had seen several people with
the same constellation of symptoms, all referred by physicians who dismissed
them as mentally ill. He wrote my internist a letter stating that he would
stake his reputation on his conclusion that I was mentally healthy but
suffering from a serious physical illness.
'Find
another psychiatrist,' my internist said over the phone, a smile in his voice.
How did he explain the fevers, chills, exhaustion, swollen lymph nodes,
dizziness? What I was going through, he suggested, was puberty. I had just
turned 20. 'Laura, everyone goes through this,' he said with the drizzly
slowness one uses with a toddler. 'It's a normal adjustment to adulthood.
You'll grow out of it in a few years.' He told me to come back in six months.
'But
I'm not happy with my treatment,' I said.
He
laughed. 'Well, I am.'
I
called his secretary and asked for my medical records. I sat on my bedroom
floor and flipped through the doctor's notes. Couldn't handle school, he had
written. Dropped out.
My
next doctor was a plump, pink man with the indiscriminate gaiety of a golden
retriever. He was halfway through a hair transplant, and clumps of hair were
lined up in neat rows on his scalp, like spring seedlings.
I
again tested positive for strep, and he renewed the antibiotics. He ran a blood
test for a virus called Epstein-Barr and found a soaring titer, a measurement
of the antibody in my system. I had, he said with pep-rally enthusiasm,
something called Epstein-Barr virus syndrome. He had it, too, he said, but he
had discovered nutritional-supplement pills that cured it. 'Whenever I feel it
coming on,' he said, 'I just take these.' He talked about how much skiing he
could do.
I
took the supplements. They had no effect. Nor did the antibiotics; the strep
raged on. The doctor changed my prescription repeatedly, to no avail.
At
the end of one of my appointments, the doctor followed me into the waiting room
and asked my mother to make an appointment so that he could test her for strep.
She said she felt fine, but he insisted that she might be infected but
asymptomatic.
Our
appointments fell on the same day. I went in first and sat while a nurse
swabbed my throat. A few minutes later, the doctor bounded in, waving the
positive-test swab, and bent over to look at my throat. I'd had strep for
nearly three months. I dropped my face into my hands. He straightened abruptly
and backed out of the room, repeating that the pills would cure the
Epstein-Barr. 'I go skiing a lot!' he hollered from down the hall.
I
was still crying as I paid the bill. The receptionist gave me a sympathetic
smile. She understood how I felt, she said, because she had Epstein-Barr, too.
'It's amazing,' she said. 'The doctor has found that everyone working here has
it.'
I
sat down. Several other patients were sitting near me, and I asked if the
doctor had given any of them a diagnosis of Epstein-Barr. Each one said yes.
While we were talking, my mother emerged from the doctor's office. He had told
her that she, too, had Epstein-Barr.
That
year, millions of cicadas boiled up from the ground, teemed over tree limbs,
and carpeted lawns and roads. The TV news showed people eating them on skewers.
Cicadas burrowed into the house, scaled the curtains, swung from our clothes. I
sat in bed, watching them bounce off the windowpane and nosedive into the
grass, where they flapped and floundered as if they were drowning. Newton, the
Dalmatian puppy my mother had adopted, zigzagged around the yard and snapped
them out of the air. We called them flying dog snacks.
My
world narrowed down to my bed and my window. I could no longer walk the length
of my street. My hair was starting to fall out. I hadn't had a period in four
months. My mouth and throat were pocked with dozens of bleeding sores and my
temperature was spiking to a hundred and one every 12 hours, attended by a
ferocious sweat; in addition to the strep, I now had trench mouth, a rare
infection of the gums. Sleeping on my side was uncomfortable because I had
little body fat left and my bones pressed into the skin on my hips, knees, and
shoulders.
In
sleep, I dreamed of vigorous motion. I had swum competitively for 10 years,
from age 7 to 17. I had been riding horses since childhood. Smitten with
thoroughbred racing, I had spent my mid-teens learning to ride short-stirrup at
a gallop, and praying that I wouldn't grow too tall to become a jockey. At
Kenyon, I had been a tennis junkie. Now, as I lost the capacity to move, sports
took over my dream world. I won at swimming in the Olympics, out-pedalled the peloton
in the Tour de France, skimmed over a racetrack on a Kentucky Derby winner.
When I woke, I felt the weight of illness on me before I opened my eyes.
Most
of the people around me stepped backward. Linc said my friends asked him how I
was, but after one or two get-well cards I stopped hearing from them. Now and
then, I called people I had known in high school. The conversations were
awkward and halting, and I felt foolish. No one knew what to say. Everyone had
heard rumors that I was sick Someone had heard I had AIDS. Another heard I was
pregnant.
I
missed Borden. At Kenyon, I had often studied in a deli run by a groovy guy
named Craig, who cruised around the place in fluorescent-yellow sunglasses. It
was there, in September of 1986, that Borden had first smiled at me. He was a
senior, with a gentle, handsome face and wavy black hair. He had torn up his
knee running track, and to avoid walking he used a battered bike to get around
campus. The bike had no chain, so he could really ride it only downhill
wiggling it to keep it going when the ground levels out. On the uphills, he
stabbed at the ground with his good leg, Fred Flintstone style. Eventually,
some frat brothers kidnapped the bike and hung it from a tree over the Scrotum
Pole, a stone marker that had earned its nickname during a legendary fraternity
vaulting incident.
From
the day we met in the deli, Borden and I had been inseparable. Since I left
Kenyon, he had sent me off-color postcards and silly drawings, mailed between
papers and finals and graduation. I wrote dirty limericks and mailed them back
to him.
That
summer, he showed up at my door. He got a job as an assistant editor at a
foreign-policy quarterly, moved in with my mother and me and took care of me,
making plans for the things we'd do when I got better.
Of
my friends, only Linc visited. Home for the summer in Chicago, he drove Dr.
Diesel fifteen hours to my house, where he would sit in a dilapidated denim
armchair at the foot of my bed. The seat on the chair had collapsed, but he sat
there anyway, his long thighs pointing up at the ceiling. Each time he saw me
after a long absence, a wide startled look would pass over his face. He once
said that he could sense the disease on me. I knew what he meant. I was
disappearing inside it.
I
saw my next physician only once. My jeans slid down my hips as I walked into
the exam room, and he watched me tug them up. He asked how often I weighed
myself. Often, I replied.
You
shouldn't weigh yourself, he said, and you have to eat. I'm not dieting, I
replied. Girls shouldn't be so thin, he said. I know, I don't want to be this
thin. Yes, yes, but girls shouldn't be so thin.
After
the appointment, I went to the bathroom, and as I opened the door to leave the
doctor nearly fell into me. I was halfway home when I realized that he had been
trying to hear if I was vomiting.
The
next doctor was a pretty, compact woman with a squirrelly brightness. She found
that I still had strep and changed the antibiotics. She ran the same tests that
everyone else had run, and, again, the results were normal. I fought off the
strep, but the other symptoms remained. I kept returning to see this doctor,
hoping she could find some way to make me feel better. She couldn't, and I
could see that it was wearing on her.
In
September, I was so weak that on a ride over to her office I had to drop my
head to my knees to avoid passing out. When the nurse entered, I was lying
down, holding my head, the room swimming around me. She took my blood pressure:
70/50. The doctor came in. She wouldn't look at me.
'I
don't know why you keep coming here,' she said, her lips tight.
I
told her that I felt faint and asked about my blood pressure. She said that it
was normal and left, saying nothing else. She then went to see my mother, who
was in the waiting room. 'When is she going to realize that her problems are
all in her head?' the doctor said.
I
returned home, lay down, and tried to figure out what to do. My psychiatrist
had found me to be mentally healthy, but my physicians had concluded that if my
symptoms and the results of a few conventional tests didn't fit a disease they
knew of, my problem had to be psychological. Rather than admit that they didn't
know what I had, they made a diagnosis they weren't qualified to make.
Without
my physicians' support, it was almost impossible to find support from others.
People told me I was lazy and selfish. Someone lamented how unfortunate Borden
was to have a girlfriend who demanded coddling. Some of Borden's friends
suggested that he was foolish and weak to stand by me. 'The best thing my
parents ever did for my deadbeat brother,' a former professor of his told him,
'was to throw him out.' I was ashamed and angry and indescribably lonely.
For
seven months I had remained hopeful that I would find a way out of my illness,
but the relentless decline of my body, my isolation, and the dismissal and
derision I was experiencing took their toll. In the fall of 1987, I sank into a
profound depression. I stopped seeing my physician and didn't try to find a new
one. One afternoon, I dug through my mother's drawer and found a bottle of
Valium that had been prescribed for back spasms. I poured the pills onto the
bed and fingered them for an hour, pushing them into lines along the patterns
on the quilt. I thought about Borden and couldn't put the pills in my mouth.
I
went back to Dr. Troshinsky. He told me to make an appointment with Dr. John G.
Bardett, the chief of the Division of Infectious Diseases at Johns Hopkins
University School of Medicine. Bardett was the foremost authority in his field,
Dr. Troshinsky said. If there were an answer, he would have it.
At
Johns Hopkins, after a lengthy exam and review of my records, Dr. Bartlett sat
down with Borden and me. My internists, he said, were wrong. My disease was
real.
'You
have Chronic Fatigue Syndrome,' he said. He explained that it was one of the
most frustrating illnesses he had encountered in his practice; presented with
severely incapacitated patients, he could do very little to help them. He
suspected that it was viral in origin, although he believed that the Epstein-Barr
virus was not involved; early lab tests had liked the virus to Chronic Fatigue
Syndrome, but subsequent research had demonstrated that some patients had had
no exposure to the virus. He could offer no treatment. Eventually, he said,
some patients recovered on their own.
'Some
don't?'
'Some
don't.'
That
night, for the first time since March, I didn't dream of being an athlete. I
dreamed of being ill. In my dreams, I was never healthy again.
In
the ensuing months, I began to improve. I hitched Newton to a leash and she
tugged me through the neighborhood, first one block, then two, then three. My
feet, soft from months in bed, blistered. The fever remained, but I was less
prone to chills.
In
the fall of 1988, Borden began graduate studies in political philosophy at the
University of Chicago, and I felt well enough to move there with him. From the
airport, we took a cab to Hyde Park, where Borden had rented a one-room
apartment. The front door appeared to have been crowbarred for criminal
purposes at least once. Inside, there was a mattress splayed across plastic
milk crates and a three-legged dresser propped up on a brick. Roaches skittered
over the walls and across the floor. The bathtub was heaped with used kitty
litter. A weeks-old hamburger sat on the stove, shrunken into a shape that
resembled the head of a mummy. The roaches were in various attitudes of repose
around it.
We
gave the mummy head a proper burial, roachproofed our toothbrushes by storing
them in the refrigerator, and tried to make ends meet on Borden's $9,000-a-year
stipend and our savings. The apartment was four flights up, with no elevator,
so most days I spent my time inside, reading about the French Revolution and
listening to our neighbor throw things at her husband.
I
wanted to be useful but I wasn't strong enough for a conventional job. The one
thing I could still do, however, was write. Shortly after arriving in Chicago,
while watching a video of the 1988 Kentucky Derby, I had an idea for an article
on the impact of overcrowded fields on the race. I researched and wrote the
piece, then mailed it to an obscure racing magazine. I got a job offer. Fifty
dollars per story, no benefits. I took only assignments that I could do from
home and wrote them in bed. The magazine never paid me, but my bylines drew
assignments at better publications, ultimately earning me regular work covering
equine medicine and horse-industry issues at Equus.
I
was growing much stronger, but whenever I overextended myself my health
disintegrated. One mistake could land me in bed for weeks, so the potential
cost of even the most trivial activities, from showering to walking to the
mailbox, had to be painstakingly considered. Sometimes I relapsed for no reason
at all. Living in perpetual fear of collapse was stressful, but on my good days
I was functioning much better. By 1990, I could walk all over Hyde Park,
navigate the stairs of the apartment with ease, and, for half an hour on one
blissful afternoon, ride a horse. Three years after becoming ill, I wrote to
Linc about the curious sensation of growing younger.
In
the summer of 1991, while visiting my mother during Borden's summer break, he
and I decided to drive to New York to see the racetrack at Saratoga. A 10-hour
road trip was risky, but I had grown tired of living so confined a life.
As
we set out, the skies darkened. By the time we reached the interstate, a
ferocious thunderstorm was crashing around us. Rain and hail hammered the roof
of the car and gusts of wind buffeted us across the lane. We were caught in
speeding traffic, but because the sheets of rain sweeping down the windshield
limited visibility to a blurry tinge of lights ahead and behind, we couldn't
slow down or pull over. It was more than an hour before we were able to escape
into a rest stop. I sat on the floor of the bathroom, looking out a high window
and watching the trees sway. The rain tapered off. My hands were shaking.
We
had planned to stop at the New Jersey farmhouse where our friends Bill and
Sarah were staying, but we were very late. Borden called them on a pay phone
while I waited in the car, watching him through the beads of rain on the
windshield. He climbed back in, and we sat with the engine idling. I was
frightened by the draining sensation in my body.
Should
we turn around? I asked. Borden's brow furrowed. Sometimes you've gotten a
second wind, he said gently, as if asking a question. I wanted to believe him,
so I agreed. He put the car in gear and we drove in silence. I felt worse and
worse. I think we should turn around, I said, struggling to push the words out.
We're closer to Bill's than we are to home, he said. If we keep going, you can
rest sooner. He was scared now, leaning forward, driving fast. We entered New
Jersey. We have to turn around, I said. Please. My head was pressed against the
window, and I was crying. We're almost there, he said. We turned into the
farmhouse driveway. There were rows of melons in the field.
Bill
took us to a guest room. Borden turned on the TV and left me to rest. By the
time he returned to check on me, I was sweating profusely and chills were
running over me in waves. He took my hand and was horrified: it was gray and
cold, and the veins had vanished.
He
spread blankets over me and tried to help me drink a glass of milk. I couldn't
sit up, so he cupped my head in his hand and tipped the milk into my mouth
sideways. It ran down my check and pooled on the pillow. My teeth chattered so
much that I couldn't speak. Borden called an emergency room. The nurse thought
that I was in shock and urged him to rush me in. But we were far from the
hospital, and doctors had never been able to help. I was sure that being moved
would kill me.
Borden
lay down and held me. Wide awake, I slid into delirium. I was in a vast desert,
looking down at a dead Indian. His body was desiccated and hardened, his skin
shiny and black and taut over his sinews, his arms bent upward, hands grasping,
clawlike. His shriveled tongue was thrust into an empty eye socket. I lay there
and trembled, whispering I love you, I love you, I love you to Borden through
clenched teeth. I'm sorry, he said.
Hours
passed. The sun rose over the melon field.
Borden
drove me back to my mother's house. I lay exhausted for three days. When I
opened my eyes on the morning of the fourth day, I had a black feeling. I
couldn't get up.
For
as long as two months at a time, I couldn't get down the stairs. Bathing became
nearly impossible. Once a week or so, I sat on the edge of the tub and rubbed a
washcloth over myself. The smallest exertion plunged me into a 'crash.' First,
my legs would weaken and I'd lose the strength to stand. Then I wouldn't be
able to sit up. My arms would go next, and I'd he unable to lift them. I
couldn't roll over. Soon, I would lose the strength to speak. Only my eyes were
capable of movement. At the bottom of each breath, I would wonder if I'd be
able to draw the next one.
The
corpse of the Indian hung in my mind. Borden and I never spoke of it, or of the
events of that night, and we never spoke of the future. To corral my thoughts,
he made lists with me: candy bars from A to Z, Kentucky Derby winners,
Vice-Presidents in backward order, N.F.L. quarterbacks, Union Army commanders.
Over and over, I asked him if I was going to survive. He always answered yes.
Late
one night, as I walked down the hall, I heard a soft, low sound and looked down
the stairway. I saw Borden, pacing the foyer and sobbing. I started to call to
him, then stopped myself realizing that he wished to be alone. The next
morning, he was as cheerful and steady as ever. But sometimes when I looked out
the window I'd see him walking around the yard in endless revolutions, head
down, hands on his temples.
One
afternoon in September, he came in, sat on my bed, and told me that classes
were starting and he had to return to Chicago. Before he left, he gave me a
silver ring engraved with the words 'Vous et nul autre (You and no other).' I
slid it on my finger and pressed my face to his chest.
With
Borden in Chicago and my mother at work, I needed assistance to get through the
day. I went through several helpers hired from nanny services. The first one
clattered in with stacks of crimson-beaded Moroccan shoes and harem pants. She
dumped them on my bed. 'Twenty for the shoes, thirty for the pants,' she said.
She prowled through the house, appraising the furniture. 'How much do you want
for your refrigerator?' she asked.
When
I asked the woman who followed to take Newton into the backyard, she opened the
front door and shooed the dog onto the street. Lying in bed upstairs, I heard
the dog barking gleefully as she galloped westward. I called to the woman but
got no response. I sat up and looked out the window. The woman was standing
high in our apple tree, mouth open, gaping at the vacant sky. The dog returned;
the woman did not.
The
third helper sympathized and commiserated, then bustled around downstairs while
I lay upstairs in bed. It wasn't until she abruptly vanished that I discovered
she had been packing armloads of my belongings into her car each evening. I
went to the closet and found only a hanger where my taffeta ball gown had been.
On a
rainy afternoon in January of 1993, I was sitting on the bed reading a magazine
when the room began whirling violently. I dropped the magazine and grabbed on
to the dresser. I felt as though I were rolling and lurching, a ship on the
high seas. I clung to the dresser and waited for the feeling to pass, but it
didn't. At five the next morning, I woke with a screeching, metal-on-metal
sound in my ears. My eyes were jerking to the left, and I couldn't stop them.
My eyes, upper lip, and cheeks were markedly swollen.
I
went to a neurologist for tests. A technician asked me to lie down on a table.
He produced something that looked like a blowtorch and pushed it into my ear. A
jet of hot air roared out, spinning the vestibular fluid in my inner ear. It
triggered such a forceful sensation of spinning that I gripped the table with
all my strength, certain that I was about to fly off and slam into the wall.
The tests determined that my vertigo was neurological in origin and virtually
untreatable. The doctor prescribed diuretics and an extremely low-sodium diet
to control the facial edema, which seemed to be linked to the vertigo. He could
do little else.
The
vertigo wouldn't stop. I didn't lie on my bed so much as ride it as it swung
and spun. There was a constant shrieking sound in my ears. The furniture flexed
and skidded around the room, and the walls folded and unfolded. Every few days
there was a sudden plunging sensation, and I would throw my arms out to catch
myself. The leftward eye-rolling came and went. Sleep brought no respite; every
dream took place on the deck of a tossing ship, a runaway rollercoaster, a
plane caught in violent turbulence, a falling elevator. Looking at anything
close-up left me reeling. I couldn't read or write. I rented audiobooks, but I
couldn't follow the narratives.
Borden
called several times a day. He told me about Xenophon and Thucydides, the wind
off Lake Michigan, the athletic feats of the roaches. When I asked him about
himself, he changed the subject.
On
Valentine's Day, a package from Borden arrived in the mail. Inside was a gold
pocket watch. I hung it from my window frame and stared at it as the room bent
and arced around it. Weeks passed, and then months. The watch dial meted out
each day, the light sliding across it: reddish in the morning, hard and
colorless at midday, red again at dusk. In the dark, I could hear it ticking.
Outside,
the world went on. Linc got married, my siblings had children, my friends got
graduate degrees and jobs and mortgages. None of it had any relation to me. The
realm of possibility began and ended in that room, on that bed. I no longer
imagined anything else. If I was asked what month it was, I had to think a
while before I could answer.
While
I was lying there, I began to believe that we had struck the deer back in 1987,
that he had come through the windshield and killed me, and that this was Hell.
Two
years passed. In late 1994, Borden took his qualifying exams, and left Chicago.
When I first saw him, lugging his green backpack, he was so thin that I gasped.
In
1995, by tiny increments, the vertigo began to abate. Eventually, I could read
the back of a cornflakes box. My strength began to return. Instead of sitting
on the edge of the tub with a washcloth, I could sit on the shower floor while
the water ran over me. The first time I showered, dead skin peeled off in
sheets. A hair stylist came and cut off eight inches of my hair, which had been
growing like kudzu for several years and was now nearing my waist. In time, I
could walk down the stairs almost every day. I sat on the patio looking at the
trees.
Since
my visit to Johns Hopkins, I had searched for an internist I could trust. In
1988, C.F.S. had been officially recognized and described by the Centers for
Disease Control and Prevention. Subsequent research suggested endocrinologic,
immunologic, and neurologic abnormalities in many C.F.S. patients, though the
cause remained elusive. Physicians were becoming aware of the disease, but many
of them knew less about it than I did. Others hawked dubious treatments. For a
while, I tried almost anything. A few treatments caused disastrous side
effects. The rest did nothing.
Then
a friend referred me to Dr. Fred Gill, a renowned infectious-disease
specialist. He was an angular, elegant man with a neat, Amish-style beard
rimming a sharp jawline. As Borden and I told him my story, I found my stomach
tightening in anticipation of a dismissive verdict. But Dr. Gill listened for
the better part of an hour. When he had finished, he nodded. He couldn't cure me,
he said, but he would do everything he could to help me cope with the illness.
In the following years, Dr. Gill managed my symptoms and coordinated my care
with other specialists.
Eager
to be productive, I called my Equus editor, Laurie Pfinz, and asked if I could
write something. She assigned a story on equine surgery and told me not to
worry about a deadline. I did the interviews on the phone from bed. Because
looking at the page made the room shimmy crazily around me, I could write only
a paragraph or two a day. When I could no longer stand the spinning, I'd take a
pillow into the yard and lie in the grass with Newton, fixing my eyes on the
treetops while she dissected a bone. It took me six weeks to write 1,500 words,
but, four years after the abortive trip to Saratoga, I was coming back.
In
1996, with Borden and Fangfoss the cat, I moved into a small apartment in
northwest Washington, D.C. One block away stood a fire station, and if
Washington has an arson district we were in the heart of it. At the Taiwanese
consulate, which was next door, a group of protesters soon set up camp, hauled
in a loudspeaker and blasted a Chinese rallying song, sung by shrieky children.
They apparently had a loop tape, so the song never ended. It was like listening
to a bone saw. After a few weeks, I started dreaming to it.
I
turned up my radio and wrote as much as I could, mostly equine veterinary
medical articles for Equus. On breaks, I took brief walks. I bought new shoes
-- I'd been lying around in socks for years - and discovered that my feet had
shrunk two sizes. I had lived for so long in silence and isolation that the
world was a sensory explosion. At the grocery store, I dragged my hands along
the shelves, touching boxes and bags, smelling oranges and pears and apples. At
the hardware store, I'd plunge my arm into the seed bins to feel the pleasing
weight of the grain against my skin. I was a toddler again.
After
years of seeing people almost exclusively on television, I found their
three-dimensionality startling: the light playing off their faces, the
complexity of their hands, the strange electric feel of their nearness. One
afternoon, I spent 15 minutes watching a shirtless man clip a hedge, enthralled
by the glide of the muscles under his skin.
On a
cool fall day in 1996, I was sifting through some documents on the great
racehorse Seabiscuit when I discovered Red Pollard, the horse's jockey. I saw
him first in a photograph, curled over Seabiscuit's neck. Looking out at me
from the summer of 1938, he had wistful eyes and a face as rough as walnut
bark.
I
began looking into his life and found a story to go with the face. Born in
1909, Red was an exceptionally intelligent, bookish child with a shock of
orange hair. At 15, he was abandoned by his guardian at a makeshift racetrack
cut through a Montana hayfield. He wanted to be a jockey, but he was too tall
and too powerfully built. That didn't stop him, though. He began race riding in
the bush leagues and fared so badly that he took to part-time prizefighting in
order to survive. He lived in horse stalls for 12 years, studying Emerson and
the 'Rubaiyat,' piloting neurotic horses at 'leaky roof' tracks, getting
punched bloody in cow-town clubs, keeping painfully thin with near-starvation
diets, and probably pills containing the eggs of tapeworms.
He
was appallingly accident-prone. Racehorses blinded his right eye, somersaulted
onto his chest at forty miles per hour, trampled him, and rammed him into the
corner of a barn, virtually severing his lower leg. He shattered his teeth and
fractured his back, hip, legs, collarbone, shoulder, ribs. He was once so badly
mauled that the newspapers announced his death. But he came back every time,
struggling through pain and fear and the limitations of his body to do the only
thing he had ever wanted to do. And in the one lucky moment of his unlucky life
he found Seabiscuit, a horse as damaged and persistent as he was. I hung Red's
picture above my desk and began to write.
What
began as an article for American Heritage became an obsession, and in the next
two years the obsession became a book. Borden and I moved to a cheap rental
house farther downtown, and I arranged my life around the project. At the local
library, I pored over documents and microfilm I requisitioned from the Library
of Congress. If I looked down at my work, the room spun, so I perched my laptop
on a stack of books in my office, and Borden jerry-rigged a device that held
documents vertically. When I was too tired to sit at my desk, I set the laptop
up on my bed. When I was too dizzy to read, I lay down and wrote with my eyes
closed. Living in my subjects' bodies, I forgot about my own.
I
mailed the manuscript off to Random House in September 2000, then fell into
bed. I was lying there the following day when the room began to gyrate.
Reviewing the galleys brought me close to vomiting several times a day. Most of
the gains I had made since 1995 were lost. I spent each afternoon sitting with
Fangfoss on my back steps, watching the world undulate and sliding into
despair.
In
March 2001, Random House released 'Seabiscuit. An American Legend.' Five days
later, I was lying down, when the phone rang. 'You are a best-selling writer,'
my editor said. I screamed. Two weeks later, I picked up the phone to hear him
and my agent shout in tandem, 'You're No. 1!' Borden threw a window open and
yelled it to the neighborhood.
That
spring, as I tried to cope with the dreamy unreality of success and the
continuing failure of my health, something began to change in Borden. At meals,
he sat in silence, his gaze disconnected, his jaw muscles working. His
sentences trailed off in the middle. He couldn't sleep or eat. He was falling
away from me, and I didn't know why.
He
came into my office one night in June, sat down, and slid his chair up to me,
touching his knees to mine. I looked at his face. He was still young and
handsome, his hair black, his skin seamless. But the color was gone from his
lips, the quickness from his eyes. He tried to smile, but the corners of his
mouth wavered. He dropped his chin to his chest. He began to speak, and
fourteen years of unvoiced emotions spilled out: the moment of watching the
woman he loved suffer, his feelings of responsibility and helplessness and
anger; his longing for children we probably couldn't have; the endless strain
of living in obedience to an extraordinarily volatile disease.
We
talked for much of the night. I found myself revealing all the grief that I had
hidden from him. When I asked him why he hadn't said anything before, he said
he thought I would shatter. I recognized that I had feared the same of him. In
protecting each other from the awful repercussions of our misfortune, we had
become strangers.
When
we were too tired to talk anymore, I went into the bedroom and sat down alone.
I slid his ring from my finger and dropped it into a drawer.
We
spent a long, painful summer talking, and for both of us there were surprises.
I didn't shatter, and neither did he. I prepared myself for him to leave, but
he didn't. We became, for the first time since our days at Kenyon, alive with
each other.
One
night that fall, I walked to the back of the yard. As Fangfoss hunted imaginary
mice in the grass, I looked out at the hill behind the house. Beyond it,
downtown Washington hummed like an idling engine, the city lights radiating
over the ridge. I looked west, where a line of row-house chimneys filed down
the hill until they became indistinguishable from the trunks of the walnut
trees at the road's end. Borden came out and joined me briefly, draping his
arms over my shoulders, then he went inside. I watched the screen door slap
behind him.
As I
turned back, I saw a slit of light arc over the houses and vanish behind the
trees. It was the first meteor I had seen since that night in Linc's car. I
thought, for the first time in a long time, of the deer.
In
the depths of illness, I believed that the deer had crashed through the
windshield and ushered me into an existence in which the only possibility was
suffering. I was haunted by his form in front of the car, his bent knee, the
seeming inevitability of catastrophe, and the ruin my life became.
I
had forgotten the critical moment. The deer's knee didn't straighten. He didn't
step into our path, we didn't strike him, and I didn't die. As sure as I was
that he had taken everything from me, I was wrong.
The
car passed him and moved on.
©
Copyright 2003 The New Yorker
[Source: The
New Yorker Date: July 7, 2003]
