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  Exiting Nirvana

  ( Elly - 2 )

  Clara Claiborne Park

  «„Exiting Nirvana" is a strong and affecting profile of an artist with autism, beautifully written by her mother. Skillfully weaving in theories of autism with the experience of raising an autistic child, Park goes beyond individual history to address the wider question of what it means to be human». — from the National Magazine Awards presentation.

  All illustrations are by Jessy Park.

  Clara Claiborne Park

  Exiting Nirvana

  A Daughter’s Life with Autism

  Praise for Clara Claiborne Park’s «Exiting Nirvana. A Daughter’s Life with Autism»

  To Jessy,

  who once couldn't talk and has spoken so much of this

  And to the memory of Ernest C. Pascucci

  «An eloquent memoir…. A loving and lovely book…. Park’s analysis of Jessy’s seemingly impenetrable systems is fascinating».

  Kevin Riordan, New jersey Courier Post

  «As much as Exiting Nirvana succeeds in bringing us into the world of autism, perhaps its greater accomplishment is in making us reconsider whatever we thought we knew about what it means to be human in the first place».

  David Royko, Chicago Tribune

  «This book will help both parents and professionals to have a greater understanding of the mind of a person with autism».

  Temple Grandin, Ph.D., author of Thinking in Pictures and Other Reports from My Life with Autism

  «A fascinating journey into the autistic mind… The anecdotes are compelling, the turns of phrase quite elegant».

  Sara Solovitch, San Jose Mercury News

  «Immensely readable. A frank, honest telling of how a mother refused to surrender A unique and invaluable case study of the nature of autism».

  Richard Nunley, Bersshire Eagle

  «An extraordinarily well-written, moving account of a mother’s struggle not only to bring her daughter into the world but also to teach her how to have an extraordinary life… The readership of this book is virtually the universe of readers. Anyone interested in child psychiatry should grab this book immediately. Any parent of a special-needs child of any kind will glean much from this book. Anyone interested in existential questions of being can learn from Clara and Jessy’s journey together. I would make this book required reading in the curriculum of every discipline in the mental health field».

  Jeffrey L. Geller, M.D., M.P.H., Psychiatric Services: A Journal of the American Psychiatric Association

  «I adore Clara Park and often reread The Siege to maintain my professional focus in times of overwhelming doubt about how to help children and their families Now she touches my mind, heart, and soul again through her poetic voice in Exiting Nirvana… There are insights into autism that can only be gained through the time-honored words of a mother’s love».

  Kathleen Quill, Ed.D., Director, Autism Institute, and author of Teaching Children with Autism

  «A masterpiece. Clara Park’s earlier book The Siege was also a masterpiece, but the two masterpieces are quite different. The first was about childhood. The second about maturity. Now we have prose instead of lyrics, serenity instead of passion. Clara has navigated through the storms and come safe to shore. Her daughter Jessy has grown slowly into self-awareness, and Clara’s work is done».

  Freeman Dyson, the Institute for Advanced Study, Princeton, and author of Origins of Life

  «A beautifully written portrait of a little understood illness.. Park has told Jessy’s story with clear objectivity but also with a mother’s warmth, sharing the bewilderment, frustrations, and triumphs of life with an autistic child. A keen observer of detail, she has patiently unraveled many of the mysteries of Jessy’s behavior, both for herself and the reader. Though this is a book about Jessy, it’s also indirectly about one of Jessy’s most fortunate accidents of fate — her remarkable mother».

  Donna Marchetti, Cleveland Plain Dealer

  Foreword

  In 1967 a remarkable book was published — The Siege, by Clara Claiborne Park, an account of her daughter’s first eight years. It was remarkable on several counts: it was the first «inside» (as opposed to clinical) account of an autistic child’s development and life; and it was written with an intelligence, a clear-sightedness, an insight, and a love that brought out to the full the absolute strangeness, the «otherness», of the autistic mind. It also brought out how much an empathetic understanding could help to lay siege to autism’s seemingly impregnable isolation.

  Jessy Park — «Elly», as she was called in The Siege — is now past forty, and Clara Park has now given us a sequel that is, to my mind, more remarkable still. The Siege could only relate the beginnings of a life, whereas Exiting Nirvana gives us a story forty years long, the whole of Jessy’s unfolding from the almost mute eight-year-old she was in 1967 to the richly gifted, though still clearly autistic, human being she is today.

  Over the years the Parks have studied as well as loved Jessy. They have kept detailed records of every stage of her development — the development of her language, her emotions, her interests and moods; of her capacities (or incapacities) for understanding other people, the social world; of her capacities for logical and systematic thought; and, not least, of her varied and singular (and sometimes hugely complex) obsessions and «systems». There is more «data» on Jessy, I suspect, than on any other autistic human being who has ever lived. And from this richness, Clara Park — a superb observer no less than a devoted parent — has distilled a lucid and beautifully wrought narrative, full not only of her own deep observations and thoughts, but of poignant and funny anecdotes of every kind («A book should consist of examples wrote Wittgenstein»), and the strange, mad poetry of Jessy’s own words. It reveals the life and mind and world of an autistic person with a depth and detail never before achieved.

  It shows, too, how at least some of what might be called the defects or strangenesses of autism can also become singular strengths. Jessy is incapable of lying, or of detecting lies; the concept of deceit is unavailable to her. She herself is such an innocent that she cannot comprehend the concept of innocence. She is extremely literal-minded. She was wholly incapable at first — though is now capable to a small degree — of putting herself in others’ shoes, of sensing their positions or perspectives, for it seems to be of the essence with Jessy, as with all autistic people, that she is «mind-blind», or lacking in so-called theory of mind.

  Jessy has been subject, from an early age, to sudden enthusiasms (her word) or obsessions (the medical word, which she has happily embraced), going from numbers and colors and unusual sounds and words to radio dials and heaters, to certain roads and houses, to atmospheric anomalies and the night sky. These obsessions, elaborated by an incessantly active and systematizing mind, have led Jessy to construct amazingly intricate systems in which weather, mood, flavors, colors — a dozen variables — are all interconnected and correlated with one another. (Jessy can instantly learn a word like «correlation», because this is already a concept she possesses, when, in contrast, she cannot read the expressions on people’s faces, or the intentions in their voices, cannot comprehend why she cannot instantly evict someone from a restaurant table she considers «hers», and is generally blind to all social meanings.) Though idiosyncratic, Jessy’s systems bring to mind the elaborate, pseudoscientific systems of numerology and astrology.

  In the past twenty years, Jessy’s obsessions have been transformed, or transmuted, into paintings — paintings, at first, of radio dials and heaters (very fresh, brilliantly colored, a sort of Pop Art), and now exquisite paintings of houses and churches, in which an uncanny accuracy of line is combined with colors of surreal brilliance
. Night scenes are her favorites, in which buildings stand out incandescently against a dark sky — cobalt, or ultra- marine, or (her favorite) «purplish black» — and in which every major star is portrayed in its exact position and magnitude.

  Exiting Nirvana is never sentimental, but it is often lyrical, and even allegorical in the universality of its themes. All of us, perhaps, have to move from some primal Eden of self-sufficiency, self-absorption, changelessness, timelessness, into the vicissitudes and frustrations and unpredictabilities of the world, into a life that may be full of growth and adventure, but that threatens continual contingency and risk. It may be — this is certainly a central theme of the book — that this sort of Nirvana can achieve in the autistic an overwhelming, engulfing, annihilating intensity, shutting out the world, in effect, by a timeless absorption in monotonous and repeated activities. Clara Park, in some of the most memorable passages of The Siege, described just this with the eighteen-month-old Jessy; and Temple Grandin (who in referring to her own autism once called herself an «anthropologist on Mars») tells us how she too as a child would «sit on the beach for hours dribbling sand through my fingers and fashioning miniature mountains», blind to the human beings, the human activities and interactions, all about her. We have all, perhaps, dribbled sand in this way, but for the autistic there is a very real danger that such dribbling will engross an entire lifetime. It was this sort of enraptured, timeless, self-stimulating nothingness that Jessy’s parents had to put under siege in the first place. But then the siege became a journey into the possibilities of coexisting in our world, partly by understanding it (which is still possible for Jessy only to a very limited extent), more by learning its (to her unintelligible) rules and customs and values by rote, while at the same time keeping, even strengthening, her own autistic singularity and identity — that immediacy and purity and simplicity of mind which lies at the core of her character and art.

  Though Jessy cannot live independently (and never will be able to), and though she requires supervision at work, she does work, with extreme competence and absolute reliability, as a mail clerk. She balances her checkbook; she pays taxes; and (the most difficult, perhaps, for anyone who is autistic) she has come to appreciate something of the feeling of other people, other minds, and of the nature of friends and friendship. And if she has left or renounced Nirvana to some extent, she can recapture it in the stillness, the timelessness, the beauty of her strange paintings. This may, indeed, be as crucial in balancing her life as anything else.

  For many years autism was seen as a defensive withdrawal from the world, on the part of a child neglected and alienated by cold, remote parents — Leo Kanner, who identified the condition and named it, spoke of «refrigerator mothers». But there is nothing whatever to support such a notion and everything to refute it. Jessy, the «baby» of her family, has been dearly loved — not only by her parents, but by her siblings — since birth; has perhaps had less trauma than most of us; and gives the impression, for much of the time, of an odd (and, as it were, secret) happiness. Clara Park speaks here of Jessy’s continuing capacity for «autistic delight»:

  Once she’d exult over her discovery that «70003 is a prime!»… Then her interest subsided; other things evoked her secret smile. Stars. Rainbows. Clouds. Weather phenomena. Quartz heaters. Odometers. Streetlamps. A strange procession of obsessions, for a year or two eliciting an intensity of emotion approaching ecstasy, then subsiding into mere pleasure. Wordless once, now a word, a phrase, could thrill her. «Asteroid explosion», «digital fluorescent number change».

  The obverse of this — and now much rarer — is the piercing cry of desolation that Jessy sometimes emits. The causes of these, Clara Park writes,

  were as inexplicable as the causes of her delight. Perhaps her milk was served in a glass instead of her silver cup.. Perhaps one of the six washcloths in the family bathroom was missing… Even when she began to put words together… we were no nearer understanding. It was, we could be sure, never anything that would make another child shriek, it was always trivial, what normal people would call trivial — trivial in everything but its effect on Jessy… By the time she was twelve or thirteen, she could tell us. But what good did it do to know that a lighted window had disrupted the darkness of the building across the street, that a cloud had covered the moon, that she had accidentally caught sight of Sirius…?

  These sudden raptures or desolations, though occurring in such trivial (but to her passionately charged) contexts, bring to mind some of the raptures and distresses that creative artists and scientists sometimes have — the ecstatic «Eureka!» of discovery or insight, the sudden feeling of calamity when things do not go right. This is all infinitely far from the emotional dullness, or muting, or «indifference», that is sometimes ascribed to the autistic.

  Clara Park speaks of Jessy’s strange happiness as characteristic of her condition. I am not sure that this is so — that autism alone can generate such a temperament or disposition or life-mood. Knowing the Parks somewhat, I can perhaps say what Clara Park herself is too modest to say: that this is a most extraordinary family — the mother a gifted teacher and writer, the father a theoretical physicist, and Jessy’s three older siblings intellectually gifted and accomplished. The Park household is one where eager interest and attention turn in all directions, and where intellectual play and fun are the constant atmosphere. And this is not only a creative and playful family, but a deeply supportive and loving one. Surely some of Jessy’s happiness and confidence, and the diversity of her own interests, must reflect this rare family situation.

  Most books about a «condition» or an «afflicted person» are sad if not tragic, even if they strike a note of heroism or bravery. Exiting Nirvana is a great exception, for while it is as deep and unsparing as reality itself, it has a joyous and lyrical quality from beginning to end.

  Oliver Sacks

  January 2001

  Exiting Nirvana

  Jessy Park: Judy’s House in Hastings-on-Hudson, 1996.

  Chapter 1

  Introductory

  I low to begin? In bewilderment, I think — that’s the truest way. That’s where we began, all those years ago. That’s where everyone begins who has to do with autistic children. And even now, when my daughter is past forty…

  This morning, at breakfast, Jessy reports an exciting discovery. It’s a word. She doesn’t say it quite clearly, but it’s recognizable: «remembrance». «A new fluffy-in-the-middle! Found in the newspaper! It is fluffy in the middle!» Her voice is triumphant, her face is alight. «I saw one! With five on each side!» Leave that unexplained, in all its strangeness. For now. Shift to something less bizarre. Somewhat less bizarre.

  * * *

  Jessy is painting a church. Her acrylics are neatly arranged on the table beside her. With her sable brush and steady hand she has rendered every brick, every curlicue of the Corinthian capital, every nick and breakage in the old stone, accurately, realistically, recognizably. Except that the capital is a vivid, penetrating, astonishing green. The elaborate details of the stonework are picked out in shade upon shade of rose and violet and turquoise and ultra- marine and yellow and green, a different green. The tower thrusts upward into azure sky. Into the blue (five shades, she tells me) she’s introduced three zigzags, one above another, exactly parallel, zig for zag. Lightning, she says. She’s painted lightning before, realistically, recognizably, working from photographs, since lightning, unlike a church, doesn’t hold still for her to sketch it. But no one ever photographed lightning like this, so neatly angular, so controlled. «I invented it!» Happily she explains: it’s what she sees when she has one of her brief migraine episodes. Migraine can be painless; Jessy is quite comfortable with hers. She points out that the zigzags too are colored: «Very pale mint, lavender, and yellow».

  Very pale; to me they all look white. Only a scrutiny as sharp as Jessy’s would notice a difference between them. Only a mind as free of conventional perceptions would make lightning out o
f a migraine illusion, or convert the dramatic disorder of nature into this orderly vision, or transfigure a deteriorating church with colors beyond the rainbow. Bizarre becomes original in the language of art, becomes surreal.

  * * *

  But Jessy’s life, and life with Jessy, is not all strangeness. Indeed, it is less strange every year, more ordinary, more like other people’s lives. We work, we shop, we do errands. So consider this recent incident, at the little post office on the island where we spend our summers. The parking lot is full. I’ll park at the curb and rush inside while she waits in the car.

  She doesn’t like that. «We could ask someone to move so we can park», she says.

  «We can’t do that», I tell her.

  She confirms this. «We can’t ask them because they were there first». She was just hoping; she really does know the rule. She learned it years ago, when she asked some people to move from her favorite table and had to leave the restaurant. Now I countersink the lesson: «How would you feel if someone asked us to move so they could park?»

  «Hurt my feelings».

  Still, evidently, more work to be done. «No, it wouldn’t hurt your feelings. Feelings get hurt when somebody does something or says something and you think they don’t like you. Or criticize you». (This is getting complicated.) «It’s not when they do something you don’t like; then you get irritated, or angry. That’s different».