In 1974, Hawkins rushes back home from college to welcome Barb and her adoring husband Karim, who has brought his wife home from Iraq for medical help. Barb, Hawkins says, "didn't seem to quite understand who we were." Her big sister speaks in a variety of accents and shouts obscenities. But, ultimately, "Barb didn't seem unhappy, she just wasn't there."
After Schizophrenia: The Story of My Sister's Reawakening After 30 Years is Margaret Hawkins' self-effacing memoir of being the person who spent her own thirty years creating the circumstances in which her homebound, undiagnosed schizophrenic sister could stay the course and get the help to move beyond mental illness. We learn Margaret's story through her focus on Barb, returning as an adult to the protection of her loving parents. But once Barb returns home in 1974, until 2006, when both parents are dead, she receives not a single mental health intervention. No attempt is made to diagnose, cure or even to alleviate her symptoms.
Barb's parents simply accommodate their daughter and arrange their lives around her presence. Mrs. Hawkins feels less lonely having her daughter home. Mr. Hawkins's protective sense of purpose goes into overdrive. After his wife dies, Mr. Hawkins focuses his very considerable energy and intelligence on providing everything in the present and future for his disabled daughter—everything except the medical care she so obviously needs and the author is helpless to bring about.
If ever there were a topic for willful blindness; for spite disguised as concern; for grandiosity aping humility, it is when one is thrust into years as a caretaker one never aspired to be. Throughout After Schizophrenia, Hawkins struggles with the personal cost of her family involvement. She is unfailingly ambitious to see Barb cured. She is consistently empathetic in her desire that Barb not be lonely, and also that she not be bullied by their loving but overbearing father. During her father's lifetime, Hawkins lives like a guardian angel in a no-fly zone: She can neither get too close to the arrangement between Barb and her father without upsetting a delicate balance, nor can she stay away without the feeling that she is leaving Barb at peril.
But we are blessed never to feel ourselves in the hands of a martyr author. When their father makes a will, putting everything in trust for Barb and designating Margaret the trustee, Hawkins pulls no punches about her feelings: "When the time came," she declares, "I could blow it off, leave it to my brother...go AWOL, leave town, leave the country." In characteristic, woodpeckerish, non-nonsense prose she continues: "Specifically and selfishly, I didn't want him to pressure me to promise to move Barb into my house to care for her as my parents had, though it was exactly what he and the world at large expected of me. Once, years before, he'd said in his most sentimental way, after we'd both had too much to drink at lunch, that he imagined one of us...would build 'a little house for Barb out back' as the neighbors had done for their elderly father years before. At the time, all I could think of was Mr. Jones and how when little girls took him May baskets, he'd stand in the doorway and slyly part the folds of his bathrobe like theater curtains to display his musty crotch. That my father now romanticized that arrangement made me furious."
Hawkins doesn't divulge details of her work life, but she paints a convincing picture of herself as a fully-employed professional woman with a full calendar of obligations. Once she becomes Barb's guardian, this full life, lived in her own home with her partner, competes with the other full existence: regular visits to her sister, shopping for her, managing and maintaining the crumbling, hundred-year-old family house that Barb is literally unable to leave. Hawkins's wakeful nights are given to anxieties about financing home health aides, fixing the failing plumbing, and figuring out how to get medications for an undiagnosed, housebound schizophrenic.
The book's jacket identifies who the glossed-over narrator Margaret Hawkins is: "a writer, critic, curator, and educator whose reviews and essays have appeared in the Chicago Sun-Times, ARTNews, and other publications for over twenty years. She currently teaches writing in the Art History and New Arts Journalism departments at the School of the Art Institute of Chicago. Hawkins is the author of two novels, A Year of Cats and Dogs, and How to Survive a Natural Disaster." These are among the activities never specified in the background of her life as she continues—never without ambivalence—pouring vast physical, moral, financial and psychic energies into improving Barb's life and health.
Hawkins is alive to every nuance of change in Barb's social presence and she creates concern equal to hers in the reader. We are prepared to weep with relief when Barb, after years of skirting Margaret, matter-of-factly sits down next to her on the couch. When Margaret and a home assistant enable Barb to venture out the door onto the screened porch, we know it's a historic moment, a moon-landing, and we cheer the monumental achievement: We've been along for the thirty years of frustration and concern to get Barb a single breath of fresh air. But we have also seen that such victories are not achieved as tricks played on an unsuspecting child. Hawkins has faith in Barb's intelligent consciousness. She believes Barb to be aware and strategic; she never treats her as naive, stupid, or childish.
Through persistence, persuasion, and the help of others, Hawkins does manage the impossible: She finds the psychiatrist who comes to the house to meet and diagnose Barb. After thirty years, it's a successful encounter and its consequences are immediately positive, and lasting.
But the stage is set for every change in Barb by circumstances orchestrated with loving patience and keen observation over the years in which Hawkins respects Barb's reality, never trying to persuade her to be other than she is, nor belittling her behavior. She trusts Barb's nature, despite her disease.
Hawkins assumes that Barb's motives and needs are essentially like everyone else's. Once their father dies, Hawkins makes this wonderful observation: "Barb was emerging from her shell, beginning to take charge of her environment. Certainly she was very ill, but maybe her withdrawal hadn't only been a result of her disease, I thought. Maybe, partly, it was something more basic, a response to not having had any privacy, any say over the conditions of her adult life...It seemed more and more obvious that the key to her recovery, as much as anything else, would be for us to honor any reasonable choices she made."
People tend to think that those suffering major mental illness are completely defined by their maladies—that there is an equivalence of identity and disease. Without any shade of polemic or even argument, Hawkins demonstrates the far more humane reality, that disease occupies one aspect of personality while the rest of the individual's life and self-awareness continue. From the very beginning of her observations of her altered sister, Hawkins sees what's there: she does not augment Barb's loud debates with her voices by interpreting them as the acts of aggression or violence that they are not; she does not overlook Barb's unfailing good manners, neatness, and continued love of good clothing and fabrics. In short, she allows the normal characteristics to coexist—as they in fact do—with the sickness. Including even her painfully honest assessments of her own missteps and anxieties, Hawkins is the ultimate trustworthy narrator is a genre that invites misguided ones and less than subtle observers.
Hawkins has written not only a penetrating story of a remarkable case of schizophrenia, but a haunting memoir of a great hearted and humble woman who refuses the temptation she meets at every turn to simplify the problems posed by her sister and mental illness. Would the reader blame her for finding Barb placement in a group home where she would have twenty-four hour care? For taking her to a doctor's office, like it or not? For administering Barb's medication, once she gets it, rather than trusting her to take it herself—as she does? Like the guardian of any mentally ill person, Hawkins would never be blamed for subsuming Barb's story into her own. Rather, she generously and bravely blends her own life story with Barb's, where the potential for growth is greatest for both.
What a brilliant decision. What awe-inspiring struggles and discoveries. What an unusual portrait of lives genuinely blended. For a true love story of dignity and consequence, you will do no better than Margaret Hawkins' remarkable portrait of sisters keeping their eyes on one another, sharing growth and conviction across the years.
After Schizophrenia is available through bookstores (ISBN 978-1-57324-535-7) or through Amazon .