After Schizophrenia: The Story of My Sister's Reawakening After 30 Years

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Overview

Schizophrenia affects more than 3 million American adults. Despite being classified as a severe mental illness, a brain disease that can be treated, it remains misunderstood. Schizophrenia still carries a stigma that too often devastates and silences families.

For 30 years, Margaret Hawkins' sister Barb lived cloistered in her family home in suburban Chicago, a prisoner of undiagnosed schizophrenia. Hearing voices and paralyzed with fear, she ...

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After Schizophrenia: The Story of How My Sister Got Help, Got Hope, and Got on with Life after 30 Years in Her Room

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Overview

Schizophrenia affects more than 3 million American adults. Despite being classified as a severe mental illness, a brain disease that can be treated, it remains misunderstood. Schizophrenia still carries a stigma that too often devastates and silences families.

For 30 years, Margaret Hawkins' sister Barb lived cloistered in her family home in suburban Chicago, a prisoner of undiagnosed schizophrenia. Hearing voices and paralyzed with fear, she was never evaluated, never treated, and refused to leave the house.

After Schizophrenia is the story of Barb's descent into severe mental illness and the healing that has come only in recent years: after her parents' death when Margaret became her guardian. With uncanny grace and humor, Margaret chronicles her family's struggle with Barb's mental illness, the love that carried them through, and the virtual army of healthcare angels willing to come to Barb's aid. This is an extraordinary story of severe mental illness and the healing that is possible with prompt diagnosis, good drugs, good care, and a fierce belief in the power to get well.

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Editorial Reviews

From the Publisher

"I was up all night reading After Schizophrenia. In writing this compelling and beautifully written book, Margaret Hawkins joins pioneers in truth, like John Nash of A Beautiful Mind, by opening another door on this strangely dark place and allowing the light of experience to shed understanding and compassion. After Schizophrenia gives hope to all. I loved this book and thank Margaret Hawkins for having the courage to write it, her family for living through it." -Judy Collins, singer/songwriter, social activist

"An outstanding tribute to the power of love and persistence." --Midwest Book Review

"An unflinching account of a family's struggle to come to terms with an adult child's severe mental illness and find hope and love on the other side. What is shows us, once again, is that most of what we think we know about mental illness is just plain wrong." --Mark Vonnegut, M.D., author of Eden Express and Just Like Someone Without Mental Illness Only More So

"A beautifully crafted story of immense compassion and subtle humor that held me in thrall from the first page to the last." --Margaret Moorman, author of My Sister's Keeper

"A compelling family memoir, written with a deep understanding of the complex ties that bind us." --Evelyn Renold, AARP

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Product Details

  • ISBN-13: 9781573245357
  • Publisher: Red Wheel/Weiser
  • Publication date: 10/1/2011
  • Pages: 256
  • Sales rank: 1,029,767
  • Product dimensions: 5.50 (w) x 8.40 (h) x 0.90 (d)

Meet the Author

Margaret Hawkins is a writer, critic, curator and educator whose reviews and essays have appeared in the Chicago Sun-Times, ARTNews, and many other publications. She teaches writing at the School of the Art Institute in Chicago and is the author of A Year of Cats and Dogs and How to Survive a National Disaster.

Carolyn S. Spiro is the author of Divided Minds.

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Read an Excerpt

After Schizophrenia

The Story of My Sister's Reawakening After 30 Years


By Margaret Hawkins

Red Wheel/Weiser, LLC

Copyright © 2011 Margaret Hawkins
All rights reserved.
ISBN: 978-1-57324-535-7



CHAPTER 1

On a promising summer day in 1974, my family's life blew up, though we didn't know it at the time. That was the day my beautiful, bright, and very American older sister returned home from Iraq.

We hadn't seen Barb in nearly three years, not since she and her Iraqi husband had moved to Basra in the summer of 1971. She'd been a radiant twenty-seven-year-old seemingly in her prime when Karim, finished with his two-year postdoctoral appointment at the University of Kentucky and unable to find a job in the States, was offered a full professorship in chemistry at Basra University. He'd had qualms about returning to the Middle East, but he wanted the job, so my sister, in love and eager for adventure, gamely went along.

Now three years later our beautiful Barb, the family star, was back for a visit. Except, she wasn't. Something had changed during those years she was gone, and the Barb we knew never really returned. The woman my parents collected at the airport that June day, whom I rushed home from college on a Greyhound bus to welcome back, was not the Barb any of us remembered saying goodbye to three years before. That Barb had vanished, and though her husband tried to bring her home, she was already gone, schizophrenic.

For the next thirty-two years, Barb lived, some might say languished, in the house she came home to—first with my parents and then, after my mother died, alone with my father until his death at the age of eighty-nine in December 2006. During that time she was never hospitalized, never evaluated by a psychiatrist, never prescribed medication, and after the first few years, she never left the house. Then suddenly my father was gone, I was her guardian, and both our lives were changing fast. I had no idea what would happen next, no idea that the dark tunnel we'd entered in June of 1974 was about to open into light.

But to explain how extraordinary these changes were—and continue to be—I need to go back to the beginning of the story, to the beginning of my sister's journey from suburban Chicago to Basra, Iraq, through schizophrenia, and back.


* * *

My sister was born in 1943 and grew up as the eldest of three children in a conservative, comfortable commuter suburb north of Chicago known in those days for its good schools and quiet streets. Three years later my brother, Tom, was born, and then eight years after that, when my sister was eleven, I arrived. We were a family of five, six if you count George the dog.

My real memories of Barb don't begin until I was four or five, when she was almost out of high school. Memory isn't always—or even often—real, though, and many of my recollections are composites constructed from family stories collaged together with pictures taken before I was born or at least before my own memories began to form.

I studied these photos as a child, memorized them as I sat on the floor leafing back and forth through the wide, black pages of big photo albums, trying to piece together what happened before I was there to see for myself. I'd come late to the party, and I could never learn enough about Barb, who always seemed to slip out the door just as I was arriving and who left for college when I was starting second grade. I could never catch up with her, and even before anything overtly strange happened, she was mysterious to me in ways that made me try to understand her without simply asking, which didn't seem possible. Instead, I chose the more indirect and secretive process of spying on the past through the peephole of someone else's camera lens.

Photographs of my sister as a child show a dreamy, pretty, dark-haired girl with a willowy figure and a faraway gaze in her big gray stunned-looking eyes. Even when she is smiling in the photos, which she often isn't, she appears distracted by some thought or only half awake, affable but abstractly so.

One early photo shows Barb with my father at a Camp Fire Girls father-daughter dinner. Maybe she is eight or nine. She wears her uniform, complete with a vest full of earnestly stitched-on patches and leans wispily, almost shyly, toward my father who, in his business suit at the end of a long day in the financial district, looks gruff and a little combative. Another photo, taken about the same time, shows my sister and brother looking waifish and sweet with their heads tilted together, tucked into a narrow bed with all their dolls and toys. There are studio portraits with Santa and a Halloween snapshot showing seven-year-old Tom, in my father's fedora, sticking my sister in the ribs with a toy gun. Ten-year-old Barb, always a bit dramatic, leans back to expose her vulnerable neck in a fair pantomime of death.

In the early photos, my mother, a cool, smoky beauty, looks lushly voluptuous in her shirtwaist dresses and pearls as she presides over cascades of children. She shows up less often and less happily later on. Off to the side stands my father, always in a suit, suspenders, and a crooked bowtie; he frowns and bites down on the stem of his pipe.

The surroundings in these photos are telling. Here we are, the so-called prosperous middle class, but of a sort constrained by WASP reserve and thrift. Our furniture is solid and old, slightly beat up and mostly passed down, with no sign of the 1950s anywhere except in my mother's waist-cinching dresses and my brother's ubiquitous Danny O'Day ventriloquist puppet. In the background, details of our genteel but already crumbling old house are visible—wide molding, bay windows, brick fireplace. What doesn't show is what isn't there and won't ever be. Modern conveniences—dishwasher, garbage disposal, laundry dryer, garage door opener, air conditioner—were not for us.

The pace of regular family photo taking quickened when Barb received a camera around the age of eleven. Even though she's not in many of the photos from that era, the subjects she chose reveal the texture of what appears to have been her very normal life. Two album pages devoted to My Slumber Party show a dozen or so grinning girls in pajamas and braces, circa 1955, lying in various arranged patterns on the floor. There are photos of George, looking like a canine tornado barely contained on a kitchen chair, and there's a whole page titled Baby Margaret, in which I appear as a somber, glowing bundle propped against various chair backs wearing a too-large cowboy hat.

Fortunately Tom got seriously interested in cameras early on so there are pictures of Barb too. One shows her standing on a beach in a wet, baggy bathing suit, straight and skinny as a stick. Another shows her at twelve or thirteen sitting on our scratchy old couch in a tight-bodiced, full-skirted party dress that shows off her slim figure. She wears a bow at her neck and appears perfectly symmetrical except for the slight, ingratiating tilt of her head that softens the pose from stiff to winsome. In another she stands on a tennis court, rail thin in shorts with a racket dangling from one wiry arm. Another shows her sitting at the secondhand Story & Clark upright piano my father bought her when she started taking lessons. She's a little older here, maybe fourteen, and fresh faced with her wrists raised gracefully over the keys. She smiles at the photographer over her shoulder. Behind her, we see sheet music for show tunes.

What strikes me most about these photos now is how cooperative my sister looks, how sweet. Childhood pictures of me show a different sort of child, a small girl with her hand on her hip and her eyebrows knitted, with one corner of her mouth raised in a wary half smile. I look challenging, intense, wry, dubious, cautious, worried. But Barb appears soft and unfailingly compliant, not eager to please, exactly, but willing to if asked. I look for clues in these photos but, honestly, other than a bit of dreaminess, I don't find them. All they're proof—and reminder—of is that her life, her many activities, her friends, and even we, her family, were once apparently quite normal.

Then the Barb in these photos changes. She goes from being a dreamy sylph, often photographed with my brother, who even as a small boy looks perpetually droll, to a stunning and self-aware young woman. Here is where the photos and my actual memories of Barb converge. She's fifteen, sixteen, seventeen, and though her figure never seems to really fill out—she'll be thin her whole life—she blooms, and her face sharpens a little. There is a new confidence, a consciousness of her own beauty.

Here is a photo I often returned to as a child, taken at some family gathering. It shows Barb sitting in the midst of a whirl of activity, detached and unsmiling. She wears dark lipstick and her dark hair is held back in a high severe ponytail tied with a crisp ribbon. She holds a Pepsi bottle and turns away from the camera, her elegant neck swiveling to show us her haughty profile, her slender legs crossed in a tight skirt. Here is the actual Barb I remember, suddenly a high school goddess.

In the background I see a blur of swinging white blond hair, me. I look about five, which means it would have been the year my mother's mother walked into the lake to die. Barb would have been sixteen. It is impossible to find the impact of that event in any of these photos except for the fact of my mother's absence from them for a long time.

Then a yellowed newspaper clipping dated a year later picks up the thread. It's a rave review of Publicity Mad, the story of aspiring actresses in Greenwich Village—that year's senior class play. Tucked in the back of the photo album along with the review is the program, which indicates that Barb Hawkins played a beatnik named Marcille Benedict.

My earliest memory of my sister in real time is Christmas morning when I was five and she was sixteen. She gave me an enormous stuffed bear I named Timmy, a grand gesture. The summer before, she'd had her first job; she must have felt flush, generous. Every year after that she gave me a different oversized stuffed animal, next a dog named Sam, and then a lion I named Gunther.

In these early memories my sister is nearly a young woman, and to me a distant figure, as radiant and unapproachable as a god, and as dangerous and capricious as one too, to be adored and feared. She was even less interested in homemaking than my mother was, and this indifference—she let it be known—included children. I don't think she ever babysat, and she wouldn't cook. The only concession she made to the domestic arts was to sew, and though she became very good at it, covering the dining room table with expanses of starchy-smelling stiff fabric pinned with tissue paper patterns I was not allowed touch, it was for her love of clothes and design, not out of any interest in housewifery.

I remember her clothes in aggregate but also as individual garments. I remember circle skirts and straight plaid ones hanging in her closet, and her neat piles of thick, bleached-white bobby socks. She kept a box of rolled silk hair ribbons on her dresser organized by color and ironed to perfection, and she wore them to match her outfits, tied in bows around the rubber bands that kept her ponytail in place. When she wasn't there I stole into her room to fondle them though she would have been furious if she'd known.

I remember her stacks of sweaters, first short-waisted ones with three-quarter-length sleeves and tiny pearlescent buttons down the front and later bulky mohair sweaters in every pastel color piled up in drawers that reeked of mothballs. Pink, cream, turquoise, chocolate, lavender, big and puffy on her tiny frame, all the rage in the 1960s. I remember her sewing machine and the clothes she made on it, the beautiful things she couldn't afford to buy, and I remember the beautiful things she did buy when she started working.

One summer she worked as a supervisor at the park district and came home tan and sinewy every day at noon in a white blouse and navy shorts that showed off her pretty legs. She'd sit at the kitchen table and wolf down mountains of food—ham salad, macaroni salad, and something called Hawaiian salad made from marshmallows, coconut, and mayonnaise that my mother bought at Barb's imperious request and, after that, big slabs of Sara Lee cheesecake—her dark brown ponytail swinging arrogantly as she complained about the brats she had to supervise. I was afraid of her that summer, afraid I was too much one of the brats she hated. Being near her was like getting too close to a fire. I might be burned by her random wrath or just by the heat from her immortal glow. She did glow, the red lipstick, the shiny hair, the perfect white teeth—she was as formidable and thoughtlessly cruel as any perfect sixteen-year-old girl could be.

In the summers she lay in a plastic lawn chair in the back yard wearing big dark glasses and reading fashion magazines, wetting her finger on her tongue before turning each page with a dramatic flick, hoping for boys to walk by so she could snub them. I remember how the house smelled of her perfume every morning and how the smell of it as she got ready for high school blended chokingly with the salty smell of bacon as my mother sadly cooked breakfast. Barb played tennis well enough to win trophies, played bridge with her friends, and played boogie-woogie on the piano.

More than four decades later, I dig her high school senior yearbook, dated 1961, out of a pile in the pantry. When I open it a cloud of mildew escapes, but there, untouched by time, is my sister's shining face on every other page. Here, she is kneeling in the front row of a group shot of girl gym leaders, smiling adorably. There, she is editing the school newspaper. On another page, she poses with the aspiring writers on the Wet Paint staff and on the next with members of the Quill and Scroll Society. Here she is yet again, twice, in a double-page spread on the school play, dressed all in black, reclining on a couch at center stage, staring moodily at the camera as the rest of the act unfolds around her.

Her face leaps out clear and bright among all these faces, most of which, in that era of helmet hairdos and terrible clothes, look strange and lost. My sister, though, looks neither strange nor lost. She looks anointed by luck, not only beautiful but self-aware, put together, confident, and even well coifed. Most of these others will grow up and out of their awkwardness into their own beauty and beautiful lives, but my sister's life is reversed, it begins with beauty. She appears not to have had an awkward day in her life.

Next to my sister's senior picture is a list of her school activities, the longest on the page. Barbara Hawkins: Pioneer [year] 4, Feature Editor 4; Senior Class Play 4; Gym Leader 3, 4; Quill and Scroll 4; Creative Writing Magazine 4; Class Council Representative 1; '61 Blueprint Staff 3; Biology Club 1, Social Chairman 1; Future Teachers Club 3; G.A.A. 1, 2; Chemistry Club 2; French Club 3; Stagecrafters Club 1.

Underneath this formidable catalog of accomplishments and memberships—social chairman for the biology club!—Barb has added her own list in blue ink. It names her activities outside of school: Model on Fashion Board, Church Choir, Corresponding Secretary for Community Church Youth Group. My heart seizes at the sight of this careful addition which, written so purposefully in her neat, round, girlish hand, reminds me of her patch-filled Camp Fire Girls vest. Both are proof of how much she cared about belonging, doing, and achieving.

Then she was off to college at the University of Illinois. What I remember about that year is not her absence but the way the house, and particularly my father, filled with excitement when she came home. On the Friday evenings of her arrivals television was banned. Instead of watching Route 66, as I would have preferred, we sat in a circle and watched Barb tell stories as if she were Marco Polo. Everything in her telling was larger than life—her professors, her friends, the books she was reading. Everybody and everything was brilliant, the world was wide, and she loved her life away from us.
(Continues...)


Excerpted from After Schizophrenia by Margaret Hawkins. Copyright © 2011 Margaret Hawkins. Excerpted by permission of Red Wheel/Weiser, LLC.
All rights reserved. No part of this excerpt may be reproduced or reprinted without permission in writing from the publisher.
Excerpts are provided by Dial-A-Book Inc. solely for the personal use of visitors to this web site.

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Table of Contents

Contents

Foreword          

Acknowledgments          

PART I: 1943 – 2006          

Chapter One          

Chapter Two          

Chapter Three          

Chapter Four          

Chapter Five          

Chapter Six          

Chapter Seven          

Chapter Eight          

Chapter Nine          

Chapter Ten          

Chapter Eleven          

Chapter Twelve          

Chapter Thirteen          

Chapter Fourteen          

Chapter Fifteen          

Chapter Sixteen          

Chapter Seventeen          

Chapter Eighteen          

Chapter Nineteen          

Chapter Twenty          

Chapter Twenty-one          

Chapter Twenty-two          

Chapter Twenty-three          

Chapter Twenty-four          

Chapter Twenty-five          

Chapter Twenty-six          

Chapter Twenty-seven          

Chapter Twenty-eight          

Chapter Twenty-nine          

PART II: 2007          

January          

February          

March 1          

March 2–31          

April          

May          

June          

July          

August          

September          

October          

November          

December          

Reading Group Discussion Guide          

ABOUT THE AUTHOR          

TO OUR READERS          


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Sort by: Showing all of 2 Customer Reviews
  • Anonymous

    Posted June 26, 2013

    Peaceclans Nursury

    Nursury is here.

    Was this review helpful? Yes  No   Report this review
  • Posted April 27, 2012

    A must read for families, mental healthcare providers, and stude

    A must read for families, mental healthcare providers, and students

    Margaret Hawkin's story is among the most compelling I have read on the subject of schizophrenia. If you
    have a family member who suffers from this dreadful disease, you will immediately identify with her and say,
    "That's exactly how I felt." If you are a mental healthcare worker, you will say, "On some level, it must be this
    difficult for every family." And if you are lucky enough not to have a family member afflicted, and have to take
    on the challenge of climbing what seems to be an insurmountable mountain, you'll say, "Thank God that didn't happen in my family." Because it IS that difficult. Ms. Hawkins honestly and colorfully describes the dynamics
    of her family members as they relate to Barb's illness. I found them to be quite human and very loveable.
    Margaret understands that Barb "is still in there someplace," treats her with love, respect, and dignity, but
    must wait patiently thirty years to impact her sister Barb's remarkable recovery. This is a story of love, hope, and endurance. Ms. Hawkins clearly describes the challenges of navigating our dysfunctional mental healthcare system, but was fortunate to come across some helpful social workers and get a few lucky breaks. I found this book to be brutally honest and deeply touching at once. I recommend that the author submit this book to NAMI for review post-publication. I shall take the book to my next NAMI affiliate's board meeting and request that we purchase it for our lending library. Additionally, I believe that the book should be on a recommended reading list for both high school and college students. In closing, all I can say to the author is, "Job well-done, comrade."

    Was this review helpful? Yes  No   Report this review
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