My syndrome, myself

A recent crop of memoirs chronicles our obsession with illness, from Tourette's syndrome to anorexia to obsessive-compulsive disorder.

Published June 24, 1998 7:00PM (EDT)

"I should like to die of consumption," Lord Byron once,
insensitively, told a tubercular friend. "Because the ladies would all
say, 'Look at that poor Byron, how interesting he looks in dying.'"
Among all diseases, TB was the Romantics' darling; Keats died of it, and
its preferred victim was imagined to be (in the words of Susan Sontag)
"a hectic, restless creature of passionate extremes, someone too
sensitive to bear the horrors of the vulgar, everyday world" -- a poet,
an artist, that is. Someone "interesting."

Antibiotics made short
work of this particular manifestation of artistic temperament, but
illness -- the right one, at least -- is a more popular way than
ever of making oneself interesting. The contemporary equivalent of the
feverish, ethereal, consumptive Romantic poet, swooning on his deathbed,
quill in hand, puffy shirt falling from one shoulder, is Elizabeth
glum-but-glamorous, waiflike visage on the cover of 1994's
"Prozac Nation: Young and Depressed in America." Extravagant, soulful
(and pretty) suffering has proven a reliable way to sell lots of books
since back in Byron's day, but in the 19th century, the truly
fashionable diseases were few. Today, it helps if you're photogenic,
like Wurtzel, but almost any old affliction can provide the occasion for
a searching work of autobiography and/or cultural history, from asthma
(Louise Desalvo's "Breathless") to stuttering (Marty Jezer's
"Stuttering, a Life Bound Up in Words"). It used to be that the story of
your life was a matter of what you did, where you went, who you knew.
Now, it's what your diagnosis is.

In her decidedly
nonautobiographical essay "Illness as Metaphor" (1978), Susan Sontag
claimed that "insanity is the current vehicle of our secular myth of
self-transcendence." That was more true in the '70s, during the heyday
of the idea that schizophrenia, like LSD, offered a mind-expanding
journey into the unconscious. (And it was easier to believe that
when the streets weren't full of deinstitutionalized travelers who never
returned from their Magical Mystery Tours.) Today, it's near-madness
that fascinates us, probably because most of us have visited that
territory once or twice, however briefly; we can identify. To be
stricken with depression, or manic-depression, or anorexia, or the urge
to self-mutilate, or obsessive-compulsive disorder, or any of a host of
other odd psychophysiological calamities, is to be handed the ideal
subject matter for a modern memoir: an extreme version of a common

Nevertheless, subject matter is only half the battle --
there's still the problem of execution. This hurdle turns out to be too
high for Lowell Handler, author of "Twitch and Shout: A Touretter's
Tale." After being written about by Oliver Sacks (the Chaucer of
neurological dysfunction) and serving as the narrator for a 1995
documentary about Tourette's syndrome, Handler, a photojournalist,
decided to commit his life story to paper. (Perhaps he was also
encouraged by his brother Evan's successful autobiographical one-man
show about battling leukemia, "Time on Fire.")

Although Tourette's
-- which is characterized by exaggerated tics, involuntary jerking
movements, grunting sounds and sometimes by profane verbal outbursts --
is a strange, dramatic condition, Handler's account of having it is
inert. "Twitch and Shout" meanders woodenly through the predictable
stages of the syndrome memoir -- the first surfacings of Handler's
illness during his childhood, the confused teenage years spent trying in
vain to fit in, going to the wrong doctors, finally finding the right
doctor, researching the condition, evaluating the treatments, joining a
support group, bridling at the stigma attached to the illness and,
ultimately, arriving at Lessons Learned as a result of it all. While a
book about a little-understood condition like Tourette's syndrome serves
the laudable purpose of increasing understanding and tolerance, in this
case that's all it does. No amount of virtuous intent can make it a
pleasure to read a sentence as wooden as the following: "Oliver is a
scientist and a writer, and I am a photographer, but I also had an
agenda of exploration and discovery and sought answers to my basic human
questions about this disorder such as why must I engage in actions I do
not want to do."

When your affliction is less exotic, you've really
got to come up with a more appealing approach. Emily Colas, author of
"Just Checking: Scenes from the Life of an Obsessive-Compulsive," opts
for a style somewhere between stand-up comedy and performance art
monologue, her story broken into evocative, sketchlike vignettes with
titles like "If You Know Your Party's Extension, Press 1 ..." and "The
Living Hell of Neatness." Colas' cool, droll tone makes a perfect
counterpart to the escalating absurdity of her disorder, the "insanity
lite" of a woman who freely partook of recreational drugs yet insisted
that her husband sample every restaurant meal she was served so that he
could screen it for poison and broken hypodermic needles. Her dread of
contamination (particularly from blood) becomes so severe she can't walk
down a sidewalk without triple-checking the soles of her shoes, refuses
to let anyone into her house (they might be concealing a cut finger) and
eventually decides she's contracted a disease just from watching a man
bleed on television.

One reason Colas' disorder makes for more
intriguing material than Handler's is that its causes seem more
mysterious. Once TB's onset could be traced to a mere microbe, the 19th
century's fascination with the disease quickly faded. Tourette's has
fairly straightforward neurological roots, and many would say the same
of obsessive-compulsive disorder, which often can be controlled with
medication. Nevertheless, Colas spends a lot of time in therapy and
musing over childhood factors (a mother who needed to flick the light
switch in multiples of four, a German nanny who "made the trains run on
time") that might have contributed to her perpetual anxiety and need for
ritualized structure.

OCD still hovers in those interstices between
the body and the mind, and the sane and the mad. When a New York Times
Magazine beauty column about the current craze for disinfectant soaps
casually mentions a young woman who waits for someone else to leave a
public restroom so she can follow her out without touching the doorknob,
Colas' disorder starts to look like everyday worry writ huge. That's
another reason why the syndrome memoir is so compelling, even to the
unafflicted. We all have our comforting little routines, our spates of
hypochondria, our control issues, so we can well imagine what it's like
to have the anxiety volume knob turned up to 11. Colas never loses her
rational faculties; they just coexist with the intrusive neurotic
thoughts that drive her to more and more fanatical feats of hygiene --
which is what makes "Just Checking" so funny. At an early age, Colas got
taught the lesson of great comedy -- that the human condition consists
of a perpetual tension between impulse and better judgment, with
judgment losing out most of the time.

Tourette's seems to have a
family relationship with OCD (the tics of a Touretter have the same
soothing effect as an obsessive-compulsive's rituals), and OCD bears a
certain resemblance to anorexia, the subject of Marya Hornbacher's
"Wasted: A Memoir of Anorexia and Bulimia." Hornbacher recalls a lot of
counting and categorizing, a "system" applied to food that often echoes
Colas' organization of the physical world into "safe" and "contaminated"
objects. To an outsider, these memoirs begin to blur together,
suggesting a continuum of neurosis, expressing itself differently
through different characters. If Tourette's is its most down-to-earth
manifestation, and obsessive-compulsives are its wry comedians, then
anorexics are surely the high divas of "insanity lite."

The model
for Hornbacher's memoir is Wurtzel's "Prozac Nation." The two books are
remarkably similar -- both amply quote suicidal poets Sylvia Plath and
Anne Sexton; both offer minutely detailed dissections of their authors'
unhappy childhoods; both contain frequent references to their authors'
exceptional talents, ambitions and intellects; both resort to a surly,
adolescent sarcasm that seems intended to disguise the underlying
melodrama of the whole enterprise. This kind of book tends to arouse
complex emotions in readers, who either completely identify with and
admire the author or find her infuriating. "Had we a god, it might have
been Dionysus," Hornbacher writes of the arts academy she attended with
a passel of other scenery-chewing teenagers, and you're either with her
all the way or you groan. Like Wurtzel, she's an incorrigible
exhibitionist, and although she proclaims that this book is an attempt
to "keep other people from going where I went," it often feels like an
extended opportunity to dwell on every aspect of herself.

illness memoir must arrive, ultimately, at the issue of the Cure.
Finding one makes for a satisfying climax to the book, but it also
erases the very thing that makes the life interesting enough to write
about in the first place. Both Wurtzel and Hornbacher opt out of this
Hobson's choice by announcing that, although the worst is over, they are
topic of discussion during the publicity tour for "Wasted") describes
her eating disorder as an "addiction," borrowing terminology and
concepts that originated in Alcoholics Anonymous. An organization based
on the idea that it's therapeutic to embrace your disease as chronic
("I'm X and I'm an alcoholic") and to publicly confess, in detail, your
personal journey to the point of "hitting bottom," AA may well be the
most significant force behind the proliferation of this kind of memoir.
The movement has transformed illness from a metaphor into an identity.

AA has also dragged many souls out of their own personal pits of
self-destruction using the venerable, nonpharmacological practice of
storytelling. For them, it recasts the basic maintenance of everyday
life -- staying sober, holding down a job and showing up for regular
meetings -- as an achievement worthy of Hercules. Likewise, in a world
where unadulterated heroism is harder and harder to define, let alone
accomplish, the syndrome memoir turns simple survival into a triumph.
Read a bunch of them, though, and the effect can be enervating -- as if
the best we can hope for is a world full of people just hanging on,
getting by, grateful only that they haven't killed themselves ... yet.
Easily intimidated readers might find such low expectations reassuring,
but it's not a vision with a lot of pizazz.

Of course, a gifted
writer can make the most shopworn tale resonant and moving: William
Styron's slim, harrowing "Darkness Visible: A Memoir of Madness" is a
case in point. But when a writer pushes the genre in new directions, as
Lauren Slater does with "Prozac Diary," even better. Slater's memoir, to
be published in September, isn't the story of her illness, it's the
story of her cure. Slater was one of the first patients prescribed
Prozac, a drug she has taken for 10 years. Its effects were sudden, "the
single most stunning experience of my life," and completely transformed
Slater, who had suffered from a case of obsessive-compulsive disorder so
severe that from age 5 she had been miserable, perpetually vexed and
"knew nothing of pleasure."

For Slater, becoming abruptly well was
like falling down Alice's rabbit hole into normalcy. She barely
recognized her life or herself. "Much has been said about the meanings
we make of illness," Slater writes, "but what about the meanings we make
out of cure? Cure is complex, disorienting, a re-visioning of the self,
either subtle or stark. Cure is the new, strange planet, pressing in."
She wanders her city in a delighted daze, eating ice cream bars,
drinking cocktails, watching street performers, flirting with men.
Ultimately, though, she has to face the implications of her cure: that
her experience of the world, even her own identity, could be utterly
changed by a mere pill.

In their own way, illness memoirs fret away
at a preoccupation that's on many people's minds today -- from
evolutionary psychologists to criminologists to ambivalent advocates of
psychopharmacology like Peter Kramer, author of "Listening to Prozac."
How much of you is you, and is what feels like your own, unique
self anything more than a cocktail of neurochemicals, subject to drastic
change should someone (or something) mess with the recipe? Slater
recalls a moment of crisis in her recovery when the Prozac began to fail
her and she contemplated upping her dose, feeling enslaved to the drug
and despair at suspecting that "when all is said and done, we are
ultimately beast." She stalks off into the Kentucky countryside and
faces down a devil duster (a tiny tornado), "sick of being sick ... sick
of being so thoroughly and pathetically passive." Although she chooses
choice: "So long as I could choose anything at all, I was more than my
chemicals, more than my cure."

And more than her illness. As long as
she was sick and impaired, Slater never had to wonder what she would do
with her life beyond getting well. Cure, for Slater, begs the question
of what she will do with her life once she gets it back again. That's a
question few illness memoirists ever get to, the hardest question of
all. But it's also the most interesting.

By Laura Miller

Laura Miller is the author of "The Magician's Book: A Skeptic's Adventures in Narnia."

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