An Invisible Thread tells of the life-long friendship between a busy sales executive and a disadvantaged young boy, and how both of their lives were changed by what began as one small gesture of kindness.
When Laura Schroff brushed by a young panhandler on a New York City corner one rainy afternoon, something made her stop and turn back. She took the boy to lunch at the McDonald’s across the street that day. And she continued to go back, again and again for the next four years until both their lives had changed dramatically. Nearly thirty years later, that young boy, Maurice, is married and has his own family. Now he works to change the lives of disadvantaged kids, just like the boy he used to be.
An Invisible Thread is the true story of the bond between a harried sales executive and an eleven-year-old boy who seemed destined for a life of poverty. It is the heartwarming story of a friendship that has spanned three decades and brought meaning to an over-scheduled professional and hope to a hungry and desperate boy living on the streets.
When advertising executive Laura Schroff was approached by 11-year-old panhandler Maurice, at first, she ignored him: "His words were part of the clatter, like a car horn or someone yelling for a cab. They were, you could say, just noise—the kind of nuisance New Yorkers learn to tune out." A moment later, when she came to, she returned and invited her new acquaintance to lunch at McDonald's, the beginning of a human connection that would change both their lives. An Invisible Thread picks up the progress of two very different people with strangely parallel stories of "complicated pasts and fragile dreams." Uplifting, without an ounce of pretension.
A straightforward tale of kindness and paying it forward in 1980s New York.
When advertising executive Schroff answered a child's request for spare change by inviting him for lunch, she did not expect the encounter to grow into a friendship that would endure into his adulthood. The author recounts how she and Maurice, a promising boy from a drug-addicted family, learned to trust each other. Schroff acknowledges risks—including the possibility of her actions being misconstrued and the tension of crossing socio-economic divides—but does not dwell on the complexities of homelessness or the philosophical problems of altruism. She does not question whether public recognition is beneficial, or whether it is sufficient for the recipient to realize the extent of what has been done. With the assistance of People human-interest writer Tresniowski (Tiger Virtues, 2005, etc.), Schroff adheres to a personal narrative that traces her troubled relationship with her father, her meetings with Maurice and his background, all while avoiding direct parallels, noting that their childhoods differed in severity even if they shared similar emotional voids. With feel-good dramatizations, the story seldom transcends the message that reaching out makes a difference. It is framed in simple terms, from attributing the first meeting to "two people with complicated pasts and fragile dreams" that were "somehow meant to be friends" to the conclusion that love is a driving force. Admirably, Schroff notes that she did not seek a role as a "substitute parent," and she does not judge Maurice's mother for her lifestyle. That both main figures experience a few setbacks yet eventually survive is never in question; the story fittingly concludes with an epilogue by Maurice.
For readers seeking an uplifting reminder that small gestures matter.
It makes me incredibly proud to work on this effort to bring awareness to the plight of people with autism. I believe that all people with autism should be given the opportunity to learn to communicate, receive a suitable academic education and experience social relationships.
Only then can they truly live a meaningful life. Please explore our website and learn more about the many ways you can help!
"Even I can't believe it," says Winslet of the overwhelming willingness of stars wanting to be involved with The Golden Hat: Talking Back to Autism (Simon & Schuster, $29.95), out today. "The truth is, I don't really know these people. They're not my friends. I am just like everyone else … I don't really know that many famous people, that's not my life. I'm a mum, I go to work, and then I'm a mum. It really was a case of bribing people for phone numbers."
The premise was simple: take a picture of yourself wearing a "golden" hat provided by Winslet — a favorite fedora plucked from the actress' own closet — and answer the question, "if you could only say one thing, what would that be?" The resulting 100 self-portraits and their words are featured in the book. Proceeds go to the Golden Hat Foundation, founded in 2010 by Winslet and Margret Ericsdottir to improve the lives of people with autism.
Why autism? Winslet is a mother to 11-year-old Mia and 8-year-old Joe — neither of whom has the developmental disorder. But in 2009, she provided the English-language narration for the Icelandic documentary, A Mother's Courage: Talking Back to Autism (originally called The Sunshine Boy),produced by Ericsdottir about her son, Keli Thorsteinsson, now 14 . He lives with a severe form of non-verbal autism and is unable to speak.
Winslet and Ericsdottir became "very close, very quickly," says Winslet, 36. Upon returning home after working on the narration, "My daughter, who watched the documentary with me, turned to me and said, 'Could you imagine if I couldn't tell you I loved you?'"
The thought, says Winslet, was mind-blowing. "I had this feeling of, 'I need to do something else.' It wasn't just a case of 'what can I do to help the cause?' It was something much more profound than that." The idea for the book hit Winslet "while I was brushing my teeth. I'm like everybody else, in a way, you think of an idea like that, you know, we all have to start somewhere."
The celebrity photos, taken in wide-ranging locales including bathrooms, inside dressing rooms and on movie sets, all feature the exact same hat, which Winslet proudly clutches in her lap. "I've personally taken it everywhere (for the book)," she says. "If I couldn't, I'd try to find someone who could."
Winslet says her favorite photo in the book comes from Michael Phelps. "Phelps had just won his eight gold medals, and Mia and Joe are big swimmers and so they had seen him win every single one. I had an opportunity to go to a training session that he was at in Baltimore, so I drove the kids and they met Michael Phelps and swam in the pool."
The men, says Winslet, took much longer deciding on a photo than the women. "Ben Stiller was (with the hat) in the men's room of a cafe downtown, and actually, I'm sure he wouldn't mind me telling this story, but he was in there for like 20 minutes. I was like, 'Dude, what are you doing?' "
Stiller was no doubt searching for the perfect snapshot all in the name of a good cause. Winslet, who admits at first she knew "shamefully little" about autism, rattles off one statistic after another. "I'm not a doctor or a scientist, and I don't have a cure, and I'm not trying to find a cure," says Winslet, who speaks passionately on the subject. "But I'm certainly trying to get people to open up their mind to what this condition actually means to these individuals, and to also find a way of breaking down those barriers that do surround these individuals which more and more push them into a world of entrapment."
As for Keli, "he does know that I'm famous … he knew that I was the girl for Titanic, even though he'd never seen the film," says Winslet, who spent Thanksgiving 2010 with her children, Keli and his mother in Austin. "It is like family. He's so grateful, and expresses that. He still can't speak, and may never develop functional speech."
Winslet realizes there's much at stake. "Here's the other thing: None of this may work. And that's a huge risk that you take. But there's no point in life sitting around and saying, 'well, maybe.' I don't want to live my life on any kind of (expletive) maybe."
But what's in it for Winslet? "Nobody's asked me that," she says, pausing for the first time during her chat. "I suppose it gives me another choice in life. Another choice to be able to try and make some changes for people that really need some changes to be made. One more choice, one more privilege."
With that life of privilege comes many questions, and when one is raised inquiring into the actress' romantic prospects, she plays coy. "I tell you something, now, more than ever, there is literally no turning back on the personal privacy thing," says Winslet, who announced her split from husband Sam Mendes in 2010. "The gate has fully come down, and I just won't talk about my private life. … It's no secret I have gone through a substantial amount in my private life, and I'm just done with having that debated upon, and discussed and ultimately judged because that is what people do, without meaning it. I'm sure I do the same thing. I'm not up for discussion anymore when it comes to that stuff."
On a professional level, Winslet begins filming a drama, Labor Day, with Josh Brolin and director Jason Reitman this summer, but won't go into much detail. "I have such a tempting fate about talking about it before I play the character … just a little quirky (expletive) kind of thing."
One thing she will talk about is Titanic's return to the big screen on April 4, when it will make its 3-D debut. "I do feel very excited about it, because I can tell that a whole new generation is going to get to experience the film," says Winslet. "Mia and Joe still have not seen it. So it is very exciting that I can actually sit with them — together — and we can all watch it together in a movie theater, and that is going to be quite amazing, actually."
Seeing herself in 3-D form was something else, says Winslet. "I was literally like, ''Oh my God, make it stop! Is that me? Oh my God, that's me.' "
I thought with the recent Limbaugh wreckage as he can only cause, Fox deserved some attention just for being a great human being that gets up and starts his day like i and others with Physical or any kind of daily challnge. This is a *WONDERFUL* look at a person with Parkinsons,although does make me laugh cause i do identify with the getting out of bed daily scenario.
There are many words to describe Michael J. Fox: Actor. Husband. Father. Activist. But readers of Always Looking Up will soon add another to the list: Optimist. Michael writes about the hard-won perspective that helped him see challenges as opportunities. Instead of building walls around himself, he developed a personal policy of engagement and discovery: an emotional, psychological, intellectual, and spiritual outlook that has served him throughout his struggle with Parkinson's disease. Michael's exit from a very demanding, very public arena offered him the time-and the inspiration-to open up new doors leading to unexpected places. One door even led him to the center of his own family, the greatest destination of all.
The last ten years, which is really the stuff of this book, began with such a loss: my retirement from Spin City. I found myself struggling with a strange new dynamic: the shifting of public and private personas. I had been Mike the actor, then Mike the actor with PD. Now was I just Mike with PD Parkinson's had consumed my career and, in a sense, had become my career. But where did all of this leave Me? I had to build a new life when I was already pretty happy with the old one..
Always Looking Up is a memoir of this last decade, told through the critical themes of Michael's life: work, politics, faith, and family. The book is a journey of self-discovery and reinvention, and a testament to the consolations that protect him from the ravages of Parkinson's.
With the humor and wit that captivated fans of his first book, Lucky Man, Michael describes how he became a happier, more satisfied person by recognizing the gifts of everyday life.
It is 1968. Lynnie, a young white woman with a developmental disability, and Homan, an African American deaf man, are locked away in an institution,the School for the Incurable and Feebleminded, and have been left to languish, forgotten. Deeply in love, they escape, and find refuge in the farmhouse of Martha, a retired schoolteacher and widow. But the couple is not alone-Lynnie has just given birth to a baby girl. When the authorities catch up to them that same night, Homan escapes into the darkness, and Lynnie is caught. But before she is forced back into the institution, she whispers two words to Martha: "Hide her." And so begins the 40-year epic journey of Lynnie, Homan, Martha, and baby Julia-lives divided by seemingly insurmountable obstacles, yet drawn together by a secret pact and extraordinary love.
When The Story of Beautiful Girl came out, I kept getting asked two questions. Why was I drawn to writing disability-themed literature? And was it hard to write from the point of view of characters with disabilities?
My answer to the first question begins with this basic fact: for one month every year, I am a twin.
My sister Beth, who has an intellectual disability, was born eleven months after me. So every year when I visit her for her birthday, the first thing we both say is, "Now we’re twins!" And for the next thirty days, as she gleefully moves through her days wearing the Tweety Bird shirts and using the Scooby Doo stickers I bought for her big celebration, we are indeed twins. Then my birthday rolls around, and when I visit her for that admittedly more secondary occasion, and she thrusts dozens of handmade cards at me, all of which express her happiness at my coming to see her, the first thing we both say is, "Now we’re not twins."
As with any siblings who are so close in age, we’ve shared a lot: parents, a brother and sister, a challenging family history, bedrooms, opinions, dreams, tears, jokes, anxieties, secrets, unspoken understandings, and sideways glances. So I have a reasonably good sense of how my sister feels, what she thinks, who she cares about, and why she does what she does.
Of course, there are additional layers to our relationship because of her disability. I feel a sense of responsibility toward her and she feels a level of trust in me. We’ve both always known that, whenever necessary, I will act as a go-between: I will explain to her the things she doesn’t understand about the world, and I will explain to the world the things it doesn’t understand about her.
At the same time, since she is a person with a disability, I’ve spent my life noticing--and being annoyed at--how so much of the world has got it all wrong when it comes to my sister and others like her. How she gets ignored by waitresses, snickered at by teenagers, patronized by people who assume she’s helpless, underestimated by people who assume she’s angelic. In addition, I’ve pondered many of the deepest issues about the mind. What is universal about intelligence? About sorrow and longing? About pleasure and love? On top of all this, I’ve long wondered: Why does so much of the public just not get it? And how, given that some people like my sister never get seen or acknowledged or heard by the world, might that ever change?
In 2002, I tried to do what I could to answer those thoughts. I wrote a memoir about my relationship with Beth, Riding The Bus With My Sister, which is about both her present-day passion of riding city buses and our lives as siblings from birth to middle age. The book, which was also adapted for a Hallmark Hall of Fame movie by the same name, led to my getting asked to give talks around the country. At every talk, I met more and more people with disabilities, their family members, and the professionals who work with them. They told me their stories, and I started to feel a new urge. I wanted to do whatever I could to give voice to those who had never been heard.
I realized I was in an unusual position to take on that responsibility. As a family member, I wouldn’t get bogged down by cliches and stereotypes. As someone who’d already published two books of fiction before Riding The Bus With My Sister, I wouldn’t have to stick with nonfiction, nor was I daunted by the idea of a novel. As a sister who’d stood up for Beth since the day I was conscious of my own existence, I felt a sense of mission. And as a once-a-year twin, I had developed the skill of being a go-between.
This gets me to the second question. Was it hard to write The Story of Beautiful Girl through the eyes of characters with disabilities?
I wish I could say it took a huge amount of effort. But there’s another word that’s synonymous with being a go-between: being a translator. I’ve spent my life translating the world into terms my sister could comprehend--and translating my sister into terms the world could comprehend.
So when I sat down to write the characters of Beautiful Girl and Number Forty-Two, I just did what I’ve always done. I wrote about the world’s rules and injustices and rewards and irrationalities as those characters would perceive them. And I wrote about their wonderings and yearnings and motivations and joys in ways that readers would understand.
Neither character is like my sister. And both go through adversity and anguish the likes of which my sister has never seen. But I wouldn’t say that writing their experiences was hard for me.
I would say, instead, that it was heart-opening and soul-deepening.
I would say, instead, that it was fun.
From Publishers Weekly
In this enthralling love story, Lynnie, a young white developmentally disabled woman with limited speech, and Homan, a deaf African-American man, meet at the Pennsylvania State School for the Incurable and Feebleminded in the late 1960s. Despite strict rules, poor conditions, an abusive staff, and the couple's lack of language, Lynnie and Homan share tender moments. After their escape, a few days of freedom not only enables the secretly pregnant Lynnie to give birth outside the walls of the corrupt institution, it also secures the couple's admiration for one another. Fears of discovery force them to leave the baby in the hands of a nurturing widow, Martha Zimmer. Soon after, the school's staff apprehend Lynnie, while Homan flees. Although their stories diverge and unfold independently of one another, memories of their short time together sustain them for more than 40 years as they develop the confidence to eventually parent, learn to sign and speak, and finally, reunite. Simon (Riding the Bus with My Sister) who grew up with a developmentally disabled sister, has written an enormously affecting read, and provided sensitive insight into a complex world often dismissed by the "abled."
Leironica Hawkins recalls always having “social problems, sensory issues and bouts of depression,” while growing up in Crown Heights, Brooklyn, as well as behavioral tics like self-rocking and involuntary hand twitches. Finally, at age 28, she was given a diagnosis: Asperger’s syndrome, a form of autism, for which she has never received treatment.
After many years of family turmoil, short-lived jobs and psychiatric difficulties, Ms. Hawkins was released by a hospital nine months ago to a Lower East Side shelter, where homeless people with handicaps live four to a room.
The yelling, the perfumes and air fresheners, the byzantine regulations: it all led to her feeling trapped and anxious. So she adopted a daily routine of leaving early in the morning and returning for the 10 p.m. curfew. She spends her days walking the cacophonous corridors of Manhattan, and has grown adept at finding its nodes of serenity.
She takes refuge in museums — especially the Metropolitan Museum of Art — libraries, art galleries and “anywhere I can go for free that will calm me down,” she said. She wears ear plugs, avoids rush hours and passes up crowded trains. In recent months, she has used public library computers to research Asperger’s and to browse listings for jobs and rented rooms.
After a systematic search of many New York Public Library branches, she found the Grand Central branch, on 46th Street between Lexington and Third Avenues, to be the quietest. But three months ago, panic set in: She noticed a sign in the library soliciting artwork for display in the library.
Ms. Hawkins had always found escape in drawing comics. And she had talent. An eighth-grade teacher made one of her cartoons into T-shirts for the whole class. She got into Art and Design High School and then briefly attended Pratt Institute. As an adult, she did fewer drawings after she smuggled her portfolio into a comics convention and pushed it into the hands of the legendary Stan Lee. He never called.
But now there was this sign, and opportunity was calling. Several panic attacks later, she resolved to create a comic book about her condition, and to submit it to the library branch.
At night, she took to slipping out of her shelter bed and locking herself in the shower. Sitting on the shower floor, she taped her sketch-paper to the tile walls, put her headphones on, and worked for hours. She ignored the knocks on the door, and sometimes redrew the same picture 10 times — a repetitive behavior typical of Asperger’s.
“I was feeling trapped and the creativity helped bring me a lot of confidence,” Ms. Hawkins said. “It was a way for me to say I’m eligible for something.”
This wasn’t just a comic — it was a journey,” she said. “It changed me as a person.”
She emerged last month with a 22-page comic book, “Asperger’s Syndrome: An Invisible Disability,” which caught the fancy of the branch manager, Jyna Scheeren. The comic went up on the walls, where it will be on display until Dec. 30.
“It represents what the library is about,” Ms. Scheeren said, “lifelong learning and bringing different people together. I’d love to see it as a book.”
The comedic story line acts as something of a primer on the condition, with three teenage characters with Asperger’s, including the autobiographical Andrea, a klutz who has problems multi-tasking and following the boss’s directions. She cannot hold a job and at one point throws a furious tantrum and punches holes in a door, and then loses her job and her apartment.
Many drawings and story elements are based on Ms. Hawkins’s life, including a scene from a nightmare of a job at a Brooklyn Heights cafe.
For research, she sketched and photographed people and places to use as models for the comic. She forced herself past her panic and approached strangers.
The juggler in Union Square taught her some skills and became the inspiration for the scene in which Andrea is seen juggling impossible tasks at work. The cute clarinetist in the fedora near Union Square became a main character, as did the teenagers in the St. Marks Place pizza shop. A man in an art store gave Ms. Hawkins a discount upon hearing about her project.
“I had to get past my fears of approaching people, but the New Yorkers I met were open and friendly and their energy helped me along,” she said on Wednesday as she walked along rainy, crowded Lexington Avenue. She stepped into a coffee shop but could not decide what to order. Back on the street, she winced as an ambulance screamed by. It was raining hard, but she had seven hours to kill before curfew.
“I guess I’ll go up to the Metropolitan Museum of Art,” she said, and disappeared into the crowd in the rain.
An investigation into the surprisingly deep correlation between mental illness and successful leadership, as seen through some of history's greatest politicians, generals, and businesspeople.
Book Description
In A First-Rate Madness, Nassir Ghaemi, who runs the Mood Disorders Program at Tufts Medical Center, draws from the careers and personal plights of such notable leaders as Lincoln, Churchill, Gandhi, Martin Luther King, Jr., JFK, and others from the past two centuries to build an argument at once controversial and compelling: the very qualities that mark those with mood disorders- realism, empathy, resilience, and creativity-also make for the best leaders in times of crisis. By combining astute analysis of the historical evidence with the latest psychiatric research, Ghaemi demonstrates how these qualities have produced brilliant leadership under the toughest circumstances.
Take realism, for instance: study after study has shown that those suffering depression are better than "normal" people at assessing current threats and predicting future outcomes. Looking at Lincoln and Churchill among others, Ghaemi shows how depressive realism helped these men tackle challenges both personal and national. Or consider creativity, a quality psychiatrists have studied extensively in relation to bipolar disorder. A First-Rate Madness shows how mania inspired General Sherman and Ted Turner to design and execute their most creative-and successful-strategies.
Ghaemi's thesis is both robust and expansive; he even explains why eminently sane men like Neville Chamberlain and George W. Bush made such poor leaders. Though sane people are better shepherds in good times, sanity can be a severe liability in moments of crisis. A lifetime without the cyclical torment of mood disorders, Ghaemi explains, can leave one ill equipped to endure dire straits. He also clarifies which kinds of insanity-like psychosis-make for despotism and ineptitude, sometimes on a grand scale.
Ghaemi's bold, authoritative analysis offers powerful new tools for determining who should lead us. But perhaps most profoundly, he encourages us to rethink our view of mental illness as a purely negative phenomenon. As A First-Rate Madness makes clear, the most common types of insanity can confer vital benefits on individuals and society at large-however high the price for those who endure these illnesses.
Editorial Reviews
''Nassir Ghamei's book is a provocative examination of the link between leadership, depression, and mania. It will arouse enormous interest, together with anger and disagreement, and many people will want to read it.'' --Paul Johnson, New York Times bestselling author of A History of the American People
''With brilliance and courage, Ghaemi explores the relationship of mental illness to creative leadership in times of crisis. He explains with great clarity the myriad meanings of mood disorder and other illnesses and ties this analysis to compassionate historical discussions of many of the most--and least--successful major leaders of the past two hundred years. This is a first-rate book.'' --Michael Fellman, professor emeritus of history at Simon Fraser University and author of Citizen Sherman
''Nassir Ghaemi reinvents psychohistory as a serious form of scientific inquiry. Along the way, he presents a bounty of startling facts about some of history's great heroes and villains. Under his highly informed and skeptical gaze, our burnished icons--Lincoln and Sherman, Churchill and Hitler, Kennedy and Nixon, and others--are in for some serious resculpting.'' --Daniel Dennett, professor of philosophy at Tufts University and author of Breaking the Spell
''No one who reads this brilliantly insightful book will ever look at history or politics the same way. Ghaemi uses his deep knowledge of medicine and psychiatry to take readers on a fascinating voyage into the minds of great leaders. His conclusions are startling, provocative, disturbing and deeply persuasive.'' --Stephen Kinzer, author of All the Shah's Men--This text refers to the Audio Cassette edition.
About the Author
Nassir Ghaemi is a professor of psychiatry at Tufts University School of Medicine and the director of the Mood Disorders Program at Tufts Medical Center in Boston. He trained in psychiatry at, and also serves on the faculty of, Harvard Medical School, and has degrees in history (BA, George Mason University), philosophy (MA, Tufts), and public health (MPH, Harvard). He has published more than a hundred scientific articles and several books on psychiatry.
Ruth Sienkiewicz-Mercer was born in 1950. She has never spoken a word; never walked, never fed herself, never combed her own hair. Trapped in a body that is functionally useless, her mind works perfectly. This is her story. Absorbing and heartbreaking, it was written with the collaboration of Ruth's friend, Steven Kaplan. Without any self pity Ruth recounts her early childhood with a loving family and some happy years at a rehabilitation center, then virtual incarceration at the notorious Belchertown State School in Massachusetts. After 16 years she was released and now she enjoys a life of purpose and personal triumph. I Raise My Eyes to Say Yes will permanently alter your perception of the severely disabled and it will inspire you with the extraordinary power of love, thought, and the human spirit.
Editorial Reviews
From Publishers Weekly
Sienkiewicz-Mercer, a paralyzed cerebral palsy victim who communicates through eye movements and facial expressions, presents her autobiography with assistance from friend and interpreter Kaplan. "The imagery of escape from a useless body, a 'natural concentration camp,' pervades this inspiring account of victory over handicap," wrote PW. Photos.
From acclaimed medical historian Howard Markel, author of When Germs Travel, the astonishing account of the years-long cocaine use of Sigmund Freud, young, ambitious neurologist, and William Halsted, the equally young, pathfinding surgeon. Markel writes of the physical and emotional damage caused by the then-heralded wonder drug, and how each man ultimately changed the world in spite of it—or because of it. One became the father of psychoanalysis; the other, of modern surgery.
Both men were practicing medicine at the same time in the 1880s: Freud at the Vienna General Hospital, Halsted at New York’s Bellevue Hospital. Markel writes that Freud began to experiment with cocaine as a way of studying its therapeutic uses—as an antidote for the overprescribed morphine, which had made addicts of so many, and as a treatment for depression.
Halsted, an acclaimed surgeon even then, was curious about cocaine’s effectiveness as an anesthetic and injected the drug into his arm to prove his theory. Neither Freud nor Halsted, nor their colleagues, had any idea of the drug’s potential to dominate and endanger their lives. Addiction as a bona fide medical diagnosis didn’t even exist in the elite medical circles they inhabited.
In An Anatomy of Addiction, Markel writes about the life and work of each man, showing how each came to know about cocaine; how Freud found that the drug cured his indigestion, dulled his aches, and relieved his depression. The author writes that Freud, after a few months of taking the magical drug, published a treatise on it, Über Coca, in which he described his “most gorgeous excitement.” The paper marked a major shift in Freud’s work: he turned from studying the anatomy of the brain to exploring the human psyche.
Halsted, one of the most revered of American surgeons, became the head of surgery at the newly built Johns Hopkins Hospital and then professor of surgery, the hospital’s most exalted position, committing himself repeatedly to Butler Hospital, an insane asylum, to withdraw from his out-of control cocaine use.
Halsted invented modern surgery as we know it today: devising new ways to safely invade the body in search of cures and pioneering modern surgical techniques that controlled bleeding and promoted healing. He insisted on thorough hand washing, on scrub-downs and whites for doctors and nurses, on sterility in the operating room—even inventing the surgical glove, which he designed and had the Goodyear Rubber Company make for him—accomplishing all of this as he struggled to conquer his unyielding desire for cocaine.
An Anatomy of Addiction tells the tragic and heroic story of each man, accidentally struck down in his prime by an insidious malady: tragic because of the time, relationships, and health cocaine forced each to squander; heroic in the intense battle each man waged to overcome his affliction as he conquered his own world with his visionary healing gifts. Here is the full story, long overlooked, told in its rich historical context.
Editorial Reviews
“Howard Markel eloquently tells the parallel stories of these two pathbreaking physicians and how their stories intersect in remarkable and sometimes tragic ways . . . Markel's extraordinary achievement combines first-rate history of medicine and outstanding cultural history.” —Publishers Weekly (starred)
"Compelling and compassionate. . . a book that profoundly demonstrates the complexity and breadth of their genius. . . a richly woven analysis complete with anecdotes, historical research, photos and present-day knowledge about the character of the addictive personality." —Booklist
On a fall afternoon in 1988, Jon Sarkin, a 35-year-old Massachusetts chiropractor, was happily playing the eighth hole on a local golf course when he felt something “twist” in his brain. Three days later he began to hear a high-pitched screech, a siren that only grew louder with the passing weeks. Doctors shrugged; a brain scan suggested a vague abnormality near a nerve at the base of the brain that controls hearing and balance.
Eight months later, driven to distraction by the unceasing noise, Dr. Sarkin underwent a controversial operation to “decompress” the small vessels surrounding the nerve. The day after surgery — having woken up long enough to report that the noise had indeed stopped — he was rushed back to the operating room with a major stroke.
He didn’t survive, not really, but he did live and slowly came to thrive, and on that tangled paradox Amy Ellis Nutt builds a tale.
Ms. Nutt, a staff writer for The Star-Ledger in Newark, won the 2011 Pulitzer Prize for feature writing for her detailed account of a shipwreck off the Jersey Shore. Now she has turned to a medical shipwreck in the person of Dr. Sarkin, whose story is both Hollywood-simple (Tom Cruise has, in fact, expressed interest) and dauntingly complex.
The Jon Sarkin who emerged from the hospital months after his stroke bore little resemblance to his prior self. He was physically delicate and walked with a cane, but that was the least of it. His personality had morphed into a difficult teenager’s: self-centered, unreliable, obsessive. Bored, he began to doodle one day shortly after he returned home.
Two decades later he is still doodling, but now as a full-fledged artist of some renown, having sold small drawings to publications like The New York Times Magazine and large pieces to private collectors for thousands of dollars.
In this tripartite story of brain, art and family life (Dr. Sarkin is married and the father of three children, all born after his stroke), Ms. Nutt manages to ace the first part and come up surprisingly short in the other two.
We never do get the complete technical information on the extent of Dr. Sarkin’s brain damage, but apparently it involved most of the left side of his cerebellum (home of balance and sensory integration) and parts of the left cerebral hemisphere, where, in a right-handed person, most of the brain’s executive and analytic functions live. Dr. Sarkin’s right brain, chock-full of instinct and loose association, was left intact and more or less took over. Dr. Sarkin now draws constantly and obsessively, working on multiple pieces at once. He writes with the same rhythm, enthusiastically drafting long, garbled poems and firing off dozens of disjointed e-mails to a single recipient in the course of a day. His thoughts are scattered and tangential, his behavior unpredictable.
Dr. Sarkin’s difficulties give Ms. Nutt a platform for a freewheeling, admirably accessible discussion of how the brain works and how it survives damage. Her subjects range from Phineas Gage, the 19th-century railroad worker whose skull was shattered by an iron spike, to autistic savants, to many others whose injuries have replaced a former self with a different version.
Ms. Nutt has an advanced degree in philosophy, which serves her well in these far regions of neuroscience, where medical detail yields to the big questions of personality and personhood, mind and soul.
But for the more concrete parts of Dr. Sarkin’s story, perplexing narrative and publishing missteps manage to obscure the landscape effectively enough that the reader is sorely tempted to head elsewhere. (And there are quite a few other places to go: Dr. Sarkin has a substantial media presence, with radio interviews, magazine profiles and a segment in “Medical Mysteries” on ABC, among others.)
Those would be the sources to tap for such basics as what Dr. Sarkin looks like, what he sounds like, and how it feels to be around him. Ms. Nutt’s readers will have absolutely no idea, for her book is narrated from his perspective alone, in the fatuous, uncritical tones of a celebrity pseudomemoir.
That Dr. Sarkin deserves a sharper focus can be surmised from the contrast between Ms. Nutt’s effusions (“He was finding the edges of himself, filling in, at long last, the barren landscape of his bruised soul”) and Dr. Sarkin’s own response to a fan who asked him what his art meant. “It doesn’t mean anything,” he said. “You want meaning? Go get The Wall Street Journal.”
And what about Dr. Sarkin’s artwork? Is it any good? Would the reader like it? There is no way to tell from this book, despite some valiant descriptions of line drawings and giant, thickly layered collages, because it contains, incredibly, not a single reproduction, and even the colorful jacket is not Dr. Sarkin’s design.
A book reviewer is charged with producing a review of the book alone, even if it shows irritating signs of turning into a giant TV listing. And so this reviewer, ever dutiful, finished her assignment up to this very paragraph, and then could not stand it one more minute.
Off she went to Dr. Sarkin’s Web site, where a selection of his work is on display. Perusing it was like ripping off a blindfold: Suddenly she saw what all that verbiage was about. And that, sadly, should not be the bottom line on any book.
First shocked with horror and despair after her son's traumatic brain injury, Dixie Fremont-Smith Coskie and her family grow to find hope, healing, and even greater love.
Dixie's narrative of how she came to appreciate the simplest of things-when her son is able to blink his eyelids, lift his finger, utter a word-is powerfully moving. It will bring you into a realm where body, mind, and spirit are pushed to their limits.
UNTHINKABLE is about perseverance, filled with universal lessons of struggle and triumph. Dixie follows each chapter of the harrowing journey with vital insights to assist others through their tragedies.
A Companion for Caregivers - Powerful tips and tools to help any parent faced with a child's traumatic injury or illness.
Background on Traumatic Brain Injury
According to The Brain Injury Association of America, traumatic brain injury (TBI) is defined as a blow or jolt to the head or a penetrating head injury that disrupts the function of the brain. Not all blows or jolts to the head result in a TBI. The severity of such an injury may range from “mild,” ie, a brief change in mental status or consciousness to “severe,” ie, an extended period of unconsciousness or amnesia after the injury. A TBI can result in short- or long-term problems with independent function.
Brain Injury Facts
1.4 million people sustain a traumatic brain injury (TBI) in the United States each year; 50,000 die, 235,000 are hospitalized, and an additional 1.1 million are treated by an emergency department (Centers for Disease Control - CDC ).
A brain injury occurs every 23 seconds in the U.S. (BIA-USA, 2006).
Traumatic brain injury (TBI) is more prevalent in the U.S. than breast cancer, HIV/AIDS, multiple sclerosis, and spinal cord injuries (CDC, 2006).
5.3 million Americans are currently living with disabilities resulting from TBI, and 80,000-90,000 join their ranks each year (CDC).
Brain injury is the leading cause of death and disability for people between the ages of 15 and 24 (CDC).
The cost of TBI in the U.S. is estimated to be $60 billion each year (CDC).
Falls and vehicle crashes are the leading causes of brain injury.
Every year more than 37,000 Massachusetts residents go to the emergency room because of a brain injury (Massachusetts Department of Public Health Report, 2006).
What are the leading causes of TBI?
Falls (28%)
Motor vehicle/traffic accidents (20%)
Struck by/against (19%)
Assaults (11%)
For active-duty military personnel in war zones, blasts are also a leading cause of TBI. Certain military duties (eg, paratrooper) increase the risk of sustaining a TBI.
Who is at highest risk of TBI?
Males are about 1.5 times as likely as females to sustain a TBI.
The two age groups at highest risk of TBI are children from birth to 4 years old and adolescents 15-19 years old.
Military personnel
African Americans have the highest death rate from TBI.
What are the long-term consequences of TBI?
The Centers for Disease Control and Prevention estimates that 5.3 million Americans currently have a long-term or lifelong need for help to perform activities of daily living as a result of TBI. According to one study, about 40% of those hospitalized with TBI had at least one unmet need for services one year after their injury. The most frequent unmet needs were:
Improving memory and problem solving
Managing stress and emotional upsets
Controlling one’s temper
Improving one’s job skills
Seat belts are 57 percent effective in preventing traumatic and fatal brain injuries
Properly fitted helmets reduce the risk of brain injuries by 88 percent
Over half of all brain injuries are related to alcohol and drug abuse
More than one-third of teen driver fatalities involve speeding.
Fact Sheet on Helmet Safety
Head injuries suffered as a result of not wearing a helmet cause three-quarters of about 900 bicycle deaths each year (National Highway Transportation Safety Association, 2006).
Properly fitted bike helmets could reduce the risk of bike-related brain injuries by 88% (Center for Disease Control, 2006).
Bike helmets could prevent an estimated 75% of bike-related fatalities and 45,000 head injuries to children each year (Center for Disease Control, 2006).
Only 1 out of 5 cyclists, ages 5 to 14, regularly wears a helmet (Center for Disease Control, 2006).
Greater than 75% of persons treated in emergency departments for bicycle-related head injury are less than 15 years of age (Center for Disease Control, 2006).
1 in 8 of the cyclists with reported injuries has a brain injury (Bicycle Helmet Safety Institute, 2006).
Direct costs of cyclists' injuries due to not using helmets are estimated at $81 million each year (Bicycle Helmet Safety Institute, 2006).
At night, Ian Brown’s 8-year-old son, Walker, grunts as he repeatedly punches himself in the head and ears.
His face is distorted, with an over-large brow, sloping eyes and a thick lower lip. He cannot speak. He cannot eat solid food, and takes in formula through a tube from a feedbag powered by a pump. The tube runs through a hole in his sleeper into a valve in his belly. When Walker’s own punches begin to awaken him, his father must disconnect the tube and lift the 45-pound boy out of his crib, carry him down three flights of stairs and try to coax him back to sleep. He also must change Walker’s ballooning diaper, as the boy is not toilet trained, and prevent him from smearing excrement everywhere. He then feeds him a bottle and tiny doses of Pablum. The kitchen is covered with the film of Pablum dust. Brown’s tasks are performed as quietly as possible so as not to disturb his wife, Johanna, and Walker’s older sister, Hayley. In the first eight years of Walker’s life, neither parent slept two uninterrupted nights in a row.
Brown begins “The Boy in the Moon” this unsparing way because he wants to fling us into his story, alongside him and his family, and because as a writer he knows that an account of the plain facts will bring us to our knees more efficiently than a dressed-up version. Walker (the sad irony of the name) was born with cardiofaciocutaneous syndrome (CFC), a genetic mutation so rare that just over 100 cases have been reported worldwide. Over the course of this book, the truth that Brown learns from his son is also rare — that the life that appears to destroy you is the one you long to embrace. Whatever is human is disabled. Walker is unable to stop bashing himself, and his father is unable to understand him. The boy is likened to the man in the moon, whose face we see though we know it is not there. The face is revealed by our believing in it. As Brown searches for his son’s mind, he finds his own.
He proceeds by leading us through a series of questions and quests regarding the science of Walker’s condition, and the boy’s future. Will he change, improve? Can he be taught? Should he be institutionalized? No one would have blamed the Browns if they had placed Walker in an institution from the start. Mother and father put the question to themselves, and their answer is the same: “No, no, not now. Later.” The reason for the delay is love. Walker brings a strange, sweet love to his family, not because he exhibits love himself, but rather because he elicits their capacity for it.
Along the way, the parents despair, quarrel, blame themselves for Walker’s lack of progress, fall into dark silences. There are money worries. Walker’s formula alone costs $12,000 a year. Husband and wife have no privacy. They pay less attention to each other than to Walker. They learn to live with him as a sideshow attraction in public. The perceived normalities of other families insult and assault them. In his investigations Brown discovers that had Walker been conceived today, a test administered at 10 weeks of pregnancy might have been available to detect abnormalities. Johanna says she would have had an abortion. Brown says, “But then you wouldn’t have had Walker.” Johanna counters that a fetus would not have been the Walker they know now. Brown speculates about what the world would be like without imperfect people like Walker. What we take from such exchanges is how lovely the couple are in their candor. One cannot help wondering if, in his formless, undemonstrative way, Walker created them.
Brown’s scientific pursuit is largely fruitless. He meets other parents with CFC children, but they offer only a passing communal solace. Too little is known of Walker’s condition. Brown rejects the idea of his son’s life “reduced to a typing error in a three-billion-long chain of letters.” Life is more complicated than a genome. He learns more from his travels in France, and in Canada, his home country, where he consults those who have given their lives to both aiding and learning from the disabled. People like the researcher Gilles Le Cardinal and Jean Vanier, who has created networks of support groups and communities for the afflicted, teach him much about Walker’s hidden mind. The 82-year-old Vanier, who founded L’Arche (after Noah’s ark), an international organization of communities for the intellectually disabled, believes that the severely disabled challenge us by their existence. They implicitly ask, “Do you consider me human?” They suggest how arduous it is to be human. They remind us of death.
Brown’s research appears to give both father and son a raison d’être. As a journalist — a feature writer for The Globe and Mail — Brown knows the satisfaction of learning a foreign subject and writing about it with newfound authority. The difference here is that most of the time journalists treat learning as a buffet at which they taste and move along. The story Brown is working on is the justification of his and Walker’s life. Yet he maintains the reporter’s tone of cool inquiry, even as he delves into matters of the spirit, which gives his learning process the feel of a reasoned capitulation. Brown does not seem born to spiritual thoughts. When he expresses them, they sound all the more persuasive, as one feels the pull of his natural resistance.
Walker is nearly 13 when Brown’s story ends, and he has changed a little. He is drawn to the sound of a human voice, even though he cannot produce one himself. It is said that babies learn language in order to tell the stories already in them. Walker cannot tell the stories inside him, but his inability may be his story, the one told in silence, of frustration and gratitude. If he knows anything, it is that he needs. He may even intuit that he is needed. When inevitably the Browns place Walker in a group assisted-living home, a white bungalow on the edge of town, it allows him what the family never imaged for him — a life of his own.
Standing back, Brown contemplates the mystery of his son, which contains other mysteries — for instance, do people like Walker improve evolution by testing our sympathetic capacities, thus moving us toward a survival of the weakest? “What if Walker’s life is a work of art in progress?” he asks. “Would that persuade you to take care of him for me?” The hurling of this gauntlet is what we have been thinking (dreading) all along. The Browns live in “an underworld of Walker’s making.” Of course they do. Yet who does not live in a world of someone else’s making? The trick lies in the attitude one brings to the inevitably compromised life. In a way, the containment that Walker forces upon his family offers an invitation to become creative within strict limits. Richard Wilbur said the strength of the genie comes from its living in a bottle. As relentlessly difficult and sorrowful as is the life that Walker shapes, it also insists on something beautiful in reaction to it. Thus Brown’s book.
But still. To be sure, Walker has made the Browns greater people. He has alerted them to the value of living in the here and now. He has helped to enlarge their ethical nature. He has made them aware that in most important things — war, love, death — we are as helpless as Walker. Nonetheless, for all that and then some, would we assume the care and feeding of Walker Brown? The father’s challenge is insincere. He would not trade his life for any of ours.
A wonder occurs on Page 50 of this book. The reader has been immersed in the endless pain of living with Walker. Suddenly there is a photograph of him and his father as they loll in a chaise. And Walker looks very much like an ordinary child. There is something slightly off about the eyes, but no more than that. After our imagining a heartbreaking monster, we see instead that Walker is close to us. He is the underdeveloped us, the unreachable us of whom we are always dimly aware. The image shepherds us through the rest of the book even after we are shown other, clearer photos of the boy’s malformations — Ian reading a newspaper, Walker leaning back in his arms, and the two of them at peace.
Roger Rosenblatt’s most recent books are “Making Toast” and “Unless It Moves the Human Heart: The Craft and Art of Writing.”
gives us a brief glance at what is to come in subsequent episodes. We see disfigured subjects photographed in harsh but beautiful settings.
Episode Two:
Episode II introduces Sixx:A.M. band mates James Michael and Dj Ashba. Nikki, DJ and James want people to stand up and reject what the media tells us has to be beautiful.
Episode Three:
We meet Amy and hear her story. We dig deeper into the personal experiences of Sixx:AM during the making of This Is Gonna Hurt.
Episode Four:
In Episode 4, we meet Mat Fraser, a successful musician, actor, and performance artist. But, his road to fame was particularly difficult because for years he struggled with a severe genetic disorder and deformity, shortened arms caused by Thalidomide.
"Lies of Beautiful people"
THE BOOK
This Is Gonna Hurt: Music, Photography and Life Through the Distorted Lens of Nikki Sixx
NEW YORK
(BUSINESS WIRE)--Two-time New York Times bestselling author Nikki Sixx has released his new book This Is Gonna Hurt: Photography And Life Through The Distorted Lens Of Nikki Sixx (William Morrow) today. As a real artist who through quality of content has achieved international success on multiple platforms in a world of YouTube and TV talent competitions, Sixx, with his “other” band Sixx:A.M. (James Michael – vocals, Dj Ashba – guitar, Nikki Sixx – bass), will release This Is Gonna Hurt, the album soundtrack to the book, on May 3rd via Eleven Seven Music. The album’s lead single, “Lies of the Beautiful People” is top five at rock radio following Sixx:A.M.’s “Life Is Beautiful,” which was the most played rock track of 2008.
As a tribute to Sixx’s institutionalized sister, the book and album are for everyone who has ever looked at themselves or others and judged from the outside. This Is Gonna Hurt explores what true beauty is and embraces our own power around that. Written entirely by Nikki with no ghostwriter, the book is part journal, part memoir, part social commentary and features his original photography. With various themes such as society's concept of beauty, art, creativity, addiction, love, family and the process of dealing with one's demons, Nikki’s most honest and raw moment comes from his exploration of his relationship with his disabled sister - and her subsequent death and the profound impact she had on Nikki's personal and professional outlook on life.
“I love being inspired, so this book or this album or any of the pieces of this mad puzzle can inspire somebody to do something they’ve actually wanted to do – to play a guitar, or pick up a pen, or pick up a paintbrush, or pick up your feet and head where you want to go…that’s exciting for me.” - Nikki Sixx
Beginning with Barnes and Noble at The Grove in Los Angeles tonight, Sixx will be heading on an eleven-city book signing tour (Please see below for a complete list of cities and dates). While Sixx is out, rocker friends Duff McKagan (Guns N’ Roses, Loaded, Velvet Revolver) and Jacoby Shaddix (Papa Roach), among others, will be filling in as guest hosts for Sixx’s syndicated hit radio show Sixx Sense with Nikki Sixx (Premiere Networks). For more information on Sixx Sense with Nikki Sixx and The Side Show Countdown with Nikki Sixx, please visit www.sixxsense.com.
Nikki Sixx is an international rock icon, founding member and bassist of Mötley Crüe, New York Times bestselling author with The Heroin Diaries and the accompanying soundtrack with Sixx:A.M., co-founder of rock fashion line Royal Underground, philanthropist, photographer and syndicated radio show host of Sixx Sense with Nikki Sixx and The Side Show Countdown with Nikki Sixx. The creative force behind a multitude of projects, Nikki never stops inventing new ways to express himself. Mediums such as his books, radio shows, music, photography and others have given Nikki the ability to fully develop as an artist. In an age of overnight stars, one hit wonders and YouTube sensations, Nikki Sixx has created and maintained a career based on the uniqueness of his content and the creativity he exhibits tying together various projects.
CHECK OUTThis Is Gonna Hurt: The Documentaries From Nikki Sixx and Sixx:A.M. presented by Hulu:
A boy named“Vanya” was born in Russia with cerebral palsy and is abandoned by his mother. A British couple discovered Vanya and vowed to save him. On the other side of the world, a woman in the US found herself longing to save a child when she heard about Vanya through her church. One little boy brought them all together. The Boy From Baby House 10 is the real-life story of John Lahutsky, an American high school student who lived the early years of his life in Russia labeled an “imbecile” by the authorities, confined to bleak baby houses, imprisoned in a psychiatric hospital and denied the love of a real family. Brought to the attention of the authorities by Alan and Sara Philps, Vanya was adopted by Paula Lahutsky who brought him to the US gave him a home and became the mother he dreamed of in his darkest hours. In The Boy From Baby House 10, Alan Philps helps John tell his story, the saga of a small boy with a big heart and an unquenchable will to survive.
Kelly Pretz is a 15-year-old on a mission to raise awareness about epilepsy by being positive, going 'Purple' for National Epilepsy Day and publishing a novel that reveals her battle with the condition. TODAY.com's Dara Brown has her story.
The true life story of a dog who changed everything for one woman. For the first time in my life, I didn't need to pretend, I didn't need to be tough: I only needed to be honest. "I have cerebral palsy. I walk funny and my balance is bad. I fall a lot. My hands shake, too. That means I'm not so good at carrying things. And if I drop stuff, sometimes it's hard to just bend down and get it." I waited anxiously for the interviewer's response. She smiled. "It sounds like a service dog could be great for you." So began Leigh Brill's journey toward independence and confidence, all thanks to a trained companion dog named Slugger. The struggling college student and the Labrador with a "a coat like sunshine" and a tail that never stopped wagging became an instant team. Together, they transformed a challenge into a triumph. Together, they inspired and educated everyone they met. Now, Leigh honors her friend with the story of their life, together.
Brill’s memoir concerns her life near the end of her college years, a time when her cerebral palsy worsened and she began to struggle with everyday tasks. Learning about helper dogs trained to aid people with CP, Leigh applies and is matched with a big, lovable yellow Lab named Slugger. For nearly 10 years, he accompanies Leigh everywhere, helping her walk, picking up dropped pens, even turning on lights and opening heavy doors. With Slugger’s aid, Leigh gradually comes to accept and be able to talk about her disease and eventually finds love and a career. This touching memoir will warm the hearts of dog lovers everywhere; Slugger is the heart and soul of the book, and his dedication, devotion, and love make him an unforgettable character. While the writing is sometimes clunky and Leigh’s family is inexplicably absent, what remains is still irresistible: a sweet story about a woman and her dog. This canine version of Homer’s Odyssey (2009) will appeal equally to readers interested in coping or helping others cope with disabilities. --Jessica Moyer
How can we give animals the best life—for them? What does an animal need to be happy?
In her groundbreaking, best-selling bookAnimals in Translation, Temple Grandin drew on her own experience with autism as well as her experience as an animal scientist to deliver extraordinary insights into how animals think, act, and feel. Now she builds on those insights to show us how to give our animals the best and happiest life—on their terms, not ours.
Knowing what causes animals physical pain is usually easy, but pinpointing emotional distress is much harder. Drawing on the latest research and her own work, Grandin identifies the core emotional needs of animals and then explains how to fulfill the specific needs of dogs and cats, horses, farm animals, zoo animals, and even wildlife. Whether it’s how to make the healthiest environment for the dog you must leave alone most of the day, how to keep pigs from being bored, or how to know if the lion pacing in the zoo is miserable or just exercising, Grandin teaches us to challenge our assumptions about animal contentment and honor our bond with our fellow creatures.
Animals Make Us Human is the culmination of almost thirty years of research, experimentation, and experience. This is essential reading for anyone who’s ever owned, cared for, or simply cared about an animal.
Tonglen is a compassion practice from the Tibetan Buddhist tradition. Nonetheless, I find that Ryokan's Zen poem above captures for me the essence of tonglen. Of course, they are both inspired by the example of the Buddha.
When I first got sick, it didn't take long for me to accumulate a collection of healing CDs from a variety of spiritual traditions. They had one thing in common: I was instructed to breathe in peaceful and healing thoughts and images, and to breathe out my mental and physical suffering. In tonglen practice, however, the instruction is to do just the opposite. We breathe in the suffering of the world and breathe out whatever kindness, serenity, and compassion we have to give. It's a counter-intuitive practice, which is why the Buddhist nun and teacher Pema Chodron says that tonglen reverses ego's logic.
Tonglen practice was brought to Tibet from India in the eleventh century as part of a group of teachings known as the "seven points of mind training," a collection of 59 "slogans" for practicing the path of compassion. The practice of tonglen is described in the slogan: Train in taking and sending alternately; put them on the breath.
Those two sentences don't give us a lot of guidance, but for hundreds of years, this slogan along with the other 58, have been a favorite subject for commentary by Tibetan masters. Recent commentaries can be found in the writings of Chogyam Trungpa, Dilgo Khyentse, and Pema Chodron, among others. These commentaries flesh out the meaning of each slogan. And so, tonglen becomes: Breathe in the suffering of others; breathe out kindness, serenity, and compassion. We are, in effect, breathing out the sublime states of mind introduced above.
I had learned tonglen practice before getting sick, but I didn't use it very often. Now it's my principal compassion practice. My bond with tonglen occured on the first day I returned to work, six months after getting sick in Paris.
Like everyone else around me, I couldn't believe I wasn't well enough to continue with my profession, at least on a part-time basis. So, a half-hour before my scheduled class, Tony dropped me off at the front door of the law school. It was the second week of January 2002. I took the elevator up one floor to my office. I was to teach Marital Property to second- and third-year students. As soon as I sat down in my office chair, I knew I was too sick to be there. I began to panic, so I lay down on a couch in the office. Unexpectedly, my thoughts turned to the millions of people who must go to work everyday even though they're sick. I realized that many of these people were in a worse position than I was—if they didn't go to work, they wouldn't be able to pay the rent or buy food for their families.
I'd been in the work force for dozens of years but had never before thought about people being forced to work while sick. As I was contemplating this, I began to breathe in their suffering (which, as a sick person myself, now included my own suffering). Then I breathed out what kindness, serenity, and compassion I had to give. To my surprise, the panic subsided and was replaced with a feeling of deep connection to all these people. Even more astonishing was the realization that, as sick as I was at that moment and as preoccupied as I was about the task awaiting me in less than ten minutes, there was still some kindness, serenity, and compassion inside me to send to others on the out-breath.
A few minutes later, I arose from the couch, took a chair with me, and for the first time in twenty years, taught a class while sitting down. For the next two and a half years of part-time teaching, I used tonglen in my office, followed by adrenaline in the classroom to get me through the work week. Only Tony saw the devastating effect that continuing to work had on me as I went straight from the car to the bed and stayed there until the next class I had to teach. When I think of those years, tonglen and that couch in my office are inseparable in my mind. I don't know how I would have survived without both.
After that first day back at work, I began to use tonglen all the time. I'd use it while waiting for the results of medical tests. It took me out of my small world—out of exclusive focus on my illness—and connected me with all the people caught up in the medical system who were anxiously waiting to hear the results of tests. It never failed to amaze me that no matter how worried I was, there was always some serenity, some good wishes, some compassion inside me to send out to others in the same situation. Finding our own storehouse of compassion is the wonder of tonglen practice. Gradually, the fear over my test results would diminish, and I could wait with equanimity to see what the world had in store for me next.
I love that tonglen is a two-for-one compassion practice. The formal instruction is to breathe in the suffering of others and breathe out kindness, serenity, and compassion. But the effect of repeated practice is that we connect with our own suffering, anguish, stress, discomfort. So, as we breathe in the suffering of others concerning a struggle we share with them, we are breathing in our own suffering over that struggle as well. As we breathe out whatever measure of kindness, serenity, and compassion we have to give, we are offering those sublime states to ourselves too. All beings are included.
Yet there came a day when I reached my limit with tonglen. I tried the practice on Thanksgiving Day, two and a half years after I got sick, while lying in my bedroom and listening to the sound of my family chatting and laughing in the front of the house. I tried breathing in the sadness and sorrow of all the people who were in the same house as their family on Thanksgiving, but were too sick to join in the festivities. It was too much. I just couldn't hold everyone's suffering without crying. So I cried.
But four years later, in a similar circumstance, the practice worked. It was a measure of how tonglen had slowly worked its magic. My second grandchild, Camden Bodhi, was born in September 2007. I hosted a welcoming party for her that, as it turned out, I could not attend. When I set the plan in motion in the spring, I was halfway through a year-long experimental antiviral treatment that appeared to be working. But six months later, on the day of the party, I was too sick to take the hour-long trip to Berkeley. I lay in bed that day, thinking about friends and family who had gathered to celebrate my granddaughter's birth and I was overcome with sorrow.
First, I tried mudita practice—cultivating joy in the joy of those who were at the celebration. It helped, but I continued to feel sad and disheartened by my inability to attend, by thoughts about the good time I was missing, by the feeling that I had let others down. So, I turned to tonglen. I breathed in the suffering of all those who were unable to be with their families on a special day of celebration. As I did this, I was aware I was breathing in my own sadness and sorrow, but, unlike that Thanksgiving Day, I was able to hold the suffering—to care for it—without feeling overcome by it. I then breathed out kindness, serenity, and compassion for them and for myself. The connection I felt with all those people was powerful and moving.
If you feel hesitant to try tonglen for fear that breathing in other people's suffering could overwhelm you, you're not alone. Here's the response given by the eco-philosopher and Buddhist scholar, Joanna Macy, when that very concern was raised at a Spirit Rock workshop. First, she reassured the woman asking the question that her capacity to hold others' suffering was greater than she imagined. Then she said:
If you really could alleviate all the suffering in the world by breathing it in, wouldn't you?
Of course, this is a hypothetical and so not a realistic assessment of the effect of practicing tonglen. Indeed at times we may cry in response to breathing in the suffering in the world, but it's compassionate crying—a perfectly appropriate response. And those moments when we can hold the suffering of the world on the in-breath and breathe out whatever kindness, serenity, and compassion we have to give, are like turning straw into gold.
Every book is born alone, but sometimes a pair will surface in accidental synchrony, a single theme creating an impromptu pas de deux.
Such is the case with two new memoirs of schizophrenia. There is hardly a shortage of such books, but Mira Bartok and Patrick Cockburn have created mirror-image story arcs, one by the daughter of a schizophrenic mother, the other by the father of a schizophrenic son. Each is a model of narrative restraint, but in combination they combust, conveying the intensely painful experience of this disease in the literary equivalent of quadraphonic sound.
A foreign correspondent for the British press, Patrick Cockburn was on assignment in Afghanistan in the winter of 2002 when his son Henry, 20, was fished fully clothed out of an icy river back home. Henry’s mother had noted “sinister changes” in his behavior for months, but this was the big break, with hallucinatory voices and visions so threatening that the river seemed the best place to hide. He was taken to a mental hospital and since then has never lived unsupervised or entirely free of disease.
The Cockburns are a prominent Irish family of letters — Mr. Cockburn’s brother Alexander is the noted political journalist — and Henry, until his “final decline,” in Mr. Cockburn’s words, fell into the expected mold of verbal, artistically talented British schoolboy.
The elder Mr. Cockburn dispassionately reconstructs his own mental journey in the intervening years, from his first naïve assumptions that Henry would recover and resume his previous life, to his final stark, resigned descriptions of Henry at age 27, living in a halfway house in London, a person who “spent a lot of his waking life thinking about where he could get his next cigarette and where he could smoke it.”
Mr. Cockburn moves through the usual soul-searching — was his own peripatetic nonpresence to blame for Henry’s illness? Were family genes at fault? He muses at some length on the case of his father-in-law, a scion of the eminent Anglo-Jewish Montefiore family, who converted to Christianity after a teenage vision of Jesus: could that be construed as a family history of psychosis?
Meanwhile, Henry contributes his own version of the story in flat staccato prose, highlighting his obsessive need to be outdoors (he has escaped from even top-security facilities dozens of times) and his profound reluctance to medicate all his vivid hallucinations away. “The forest would come alive and speak to me,” he writes. “The tree roots would move at the touch of my finger.” Indeed, the book’s ending suggests that although Henry has made an uneasy peace with his meds, the trees are still not entirely silent.
Mira Bartok’s narrative begins almost exactly where the Cockburns’ ends, with an unstable young adult and her unnerved family. Her mother, Norma Herr, had been a piano virtuoso as a child, but at 18 the voices inside her head “arrived unannounced in all their terrible glory.”
Products of a brief marriage, Mira and her sister had a childhood punctuated by their mother’s agitated pacing, her fierce conversations with herself, her suicide attempts. Occasional family trips to the symphony were invariably cut short because “something inexplicable” happened that made their mother whisper obscenities in the aisle.
The girls grew up and moved far away, but their mother tracked them down by mail, by phone or sometimes in increasingly disheveled person. “Have I been a bad mother to you? Do you still love me? I need you here. We have things to discuss.”
She wielded knives, a broken bottle. Finally, in desperation, both daughters changed their names (“She took Isaac Bashevis Singer’s last name, I took Bela Bartok’s”) and severed all contact with their now homeless mother.
Or such was the plan; Ms. Bartok never quite managed to pull it off. She continued to send her mother letters and small presents for years, even as she concealed her own address and phone number. But only as her 80-year-old mother lay dying of cancer did they meet again, and did Ms. Bartok, by then an artist and prolific author of children’s books, experience once again the disease’s tangled words and thoughts.
That was not so much through her mother’s physical presence as through the wealth of diaries she found in a storage bin, with decades of entries stumbling back and forth along a thin edge of reason: “I see that little bits of my life in distorted form have gotten into movie stories. I still have received no compensation for that. Ultimately, what I do know is this: I am a homemaker, my records have never been straightened out, and my need for privacy and house is greater than ever. I write this in a motel room looking out onto garbage bins.”
As with the Cockburns’ book, the intertwined voices of grief-stricken, articulate sanity and not-so-sane but often quite poetic illness make a duet both wonderful and terrible. Sadly, it is not nearly so terrible as the worst detail of both books: the failure of the medical system to help much with the pain of either set of writers.
In the 60-odd years separating Ms. Herr’s psychotic break from Henry Cockburn’s, mental hospitals have closed in droves, community-based services have proliferated, generations of antipsychotic drugs have been patented. The disease, at least in the severe form represented here, remains undaunted. It is hard to think of one that requires more courage from patients or their families.
In the late-nineteenth and early-twentieth centuries, municipal laws targeting "unsightly beggars" sprang up in cities across America. Seeming to criminalize disability and thus offering a visceral example of discrimination, these "ugly laws" have become a sort of shorthand for oppression in disability studies, law, and the arts.
In this watershed study of the ugly laws, Susan M. Schweik uncovers the murky history behind the laws, situating the varied legislation in its historical context and exploring in detail what the laws meant. Illustrating how the laws join the history of the disabled and the poor, Schweik not only gives the reader a deeper understanding of the ugly laws and the cities where they were generated, she locates the laws at a crucial intersection of evolving and unstable concepts of race, nation, sex, class, and gender. Moreover, she explores the history of resistance to the ordinances, using the often harrowing life stories of those most affected by their passage. Moving to the laws' more recent history, Schweik analyzes the shifting cultural memory of the ugly laws, examining how they have been used-and misused-by academics, activists, artists, lawyers, and legislators.
Reviews
“This cultural history is a revelation, rich with insights that let us ponder our own encounters with disability and the categories we make.” - The Cleveland Plain Dealer
“Schweik draws on a deep index of resources, from legal proceedings to out-of-print books, to tell the story of individuals long lost to history.” - Publishers Weekly
“What is ugliness, and how ugly is too ugly? Perverse though such discrimination might seem today, Schweik suggests that re-examining such laws 'might prove very useful as a way of foregrounding the inevitable ambiguity of the category of ‘disability.’”
Say you have a "special child," which in the South means one between Down's and dyslexic. Birth him with his father away on Army maneuvers along East Texas bayous. Give him his only visitor in the military hospital his father's father, a sometime railroad man, sometime hired gun for Huey Long with a LouisianaSpecial Police badge. Take the infant to Manhattan, Kansas, in winter, where the only visitor is a Chinese Peeping Tom, little yellow face in the windows during the cold nights. Further frighten the mother, age twenty, with the child's convulsions. There's something "different" about this child, the doctors say.
Move the family to Kirbyville, Texas, where the father cruises timber in the big woods. Fill the back porch with things the father brings home: raccoons, lost bird dogs, stacks of saws, and machetes. Give the child a sandbox to play in, in which scorpions build nests. Let the mother cut the grass and run over rattlesnakes, shredding them all over the yard. Make the mother cry and miss her mother. Isolate her from the neighbors because she is poor and Catholic. For playmates, give the child a mongoloid girl who adores him. She is the society doctor's child and is scared of thunder. When it storms, she hides, and only the special child can find her. The doctor's wife comes to the house in desperation. Please help me find my daughter. Here she is, in the culvert, behind a bookcase, in a neighbor's paper tepee. Please come to a party, the doctor's wife sniffs, hugging her daughter. At the party, it goes well for the nervous mother and the forester father until their son bites the arm of a guest and the guest goes to the hospital for stitches and a tetanus shot. The special child can give no reason why.
Move the family to a tobacco county in Southside Virginia. It is the early sixties, and black families still get around on mule and wagon. Corn grows up to the backs of houses even in town. Crosses burn in yards of black families and Catholics. Crew cut the special child's hair in the barbershop where all the talk is of niggers and nigger-lovers. Give the child the responsibility of another playmate, the neighbor two houses down, Dr. Jim. When Dr. Jim was the child's age, Lee left his army at Appomattox. When Dr. Jim falls down between the corn rows he is always hoeing, the child must run for help. Sometimes the child just squats beside Dr. Jim sprawled in the corn and listens to Dr. Jim talking to the sun. Sometimes in the orange and grey dust when the world is empty, the child lies in the cold backyard grass and watches the thousands of starlings swarm Dr. Jim's chimneys, and the child feels like he is dying in an empty world.
The child is five years old.
Downstairs in the house the family shares is a rough redneck, a good man who brought a war bride home from Italy. The war bride thought the man was American royalty because his name was Prince. Prince was just the man's name. The Italian war bride is beautiful and has borne two daughters, the younger is the special child's age. The elder is a teenager who will soon die of a blood disease. The beautiful Italian wife and the special child's mother smoke Salems and drink Pepsi and cry together on the back steps. They both miss their mothers. In the evening Prince comes home from selling Pontiacs, and the forester father comes home from the forest, and they drink beer together and wonder about their wives. They take turns mowing the grass around the house.
The company the father works for is clearing the land of trees. The father finds himself clearing the forests off the old battlefields from the Civil War. The earthworks are still there, stuff is still just lying around. He comes home with his pockets full of minie balls. He buys a mine detector from an Army surplus store, and the family spends weekends way deep in the woods. One whole Sunday the father and the mother spend the day digging and digging, finally unearthing a cannon-sized piece of iron agate. The mother stays home after that. On Sunday nights she calls her mother in Louisiana and begs to come home. No, her mother says. You stay. She says this in Cajun French.
The little girl downstairs is named Debbie. The special child and Debbie play under the big pecan tree where the corn crowds the yard. One day the special child makes nooses and hangs all of Debbie's dolls from the lower limbs of the tree. Debbie runs crying inside. Estelle, the big black maid, shouts from the back door at the special child to cut the baby dolls down, but she doesn't come out in the yard to make him do this and he does not. She is frightened of the special child, and he knows this. If he concentrates hard enough, he can make it rain knives on people's heads.
Maybe it would be best if something were done with the special child. The mother and father send him to kindergarten across town, where the good folk live. The father has saved his money and has bought a lot to build a house there, across from the General Electric Appliance dealer. Because he spent all his money on the lot, the father has to clear the land himself. He borrows a bulldozer from the timber company and "borrows" some dynamite. One Saturday he accidentally sets the bulldozer on fire. One Sunday he uses too much dynamite to clear a stump and cracks the foundation of the General Electric Appliance dealer's house. The father decides not to build in that neighborhood after all.
In the kindergarten in that part of town there are records the teacher whom the special child calls Miss Perk lets him play over and over. When the other kids lie on rugs for their naps, she lets him look at her books. During reading hour he sits so close to her that she has to wrap him in her arms while she holds the book. The best stories are the ones Miss Perk tells the class herself. About the little girl whose family was murdered on a boat and the criminals tried to sink the boat. The little girl saw water coming in the portholes, but she thought the criminals were just mopping the decks and doing a sloppy job. Miss Perk told about the car wreck she saw that was so bloody she dropped a pen on the floor of her car for her son to fetch so he wouldn't have to see the man with the top of his head ripped off like he had been scalped. On Fridays is Show-and-Tell, and the special child always brings the same thing in for Show-and-Tell, his cat Mr. Priss. Mr. Priss is a huge, mean tomcat that kills other cats and only lets the special child near him. The special child dresses Mr. Priss in Debbie's baby doll clothes, especially a yellow raincoat and yellow sou'wester-style rain hat. Then the special child carries Mr. Priss around for hours in a small suitcase. When his mother asks if he has the cat in the suitcase again, the special child always says, No, ma'am.
Miss Perk says the way the other children follow the special child around, that the special child will be something someday, but she doesn't say what.
The father and the mother meet some new people. There is a new barber and his wife. The new barber plays the guitar in the kitchen and sings Smoke! Smoke! Smoke that cigarette! He is handsome and wears so much oil in his hair that it stains the sofa when he throws back his head to laugh. He likes to laugh a lot. His wife teaches the mother how to dance, how to do the Twist. There is another new couple in town, a local boy, sort of a black sheep, from country folk, who went away to Southeast Asia to be a flight surgeon and is back with his second or third wife, nobody knows for sure. At the reckless doctor's apartment, they drink beer and do the Twist and listen to Smothers Brothers albums. They burn candles stuck in Chianti bottles. The special child is always along because there is no money for a babysitter and Estelle will not babysit the special child. One night the special child pulls down a book off the doctor's shelf and begins to slowly read aloud from it. The party stops. It is a college book about chemicals. In two more months the child will start first grade.
At first, first grade is empty. Most of the children are bringing in the tobacco harvest. The ones who show up are mostly barefoot and dirty and sleep with their heads on the desk all day. A lot of them have fleas and head lice. Most of them have been up all night tying tobacco sticks, their hands are stained black with nicotine.
At first, first grade makes no sense to the special child. The child wants to get to the books, but the books are for later, the teacher tells him. You must learn the alphabet first. But the child has learned the alphabet already; Miss Perk taught him the letters perched in her lap at her desk when the other children napped, and he taught himself how they fit together to make words sitting close to her as she read from children's books and Life magazine. The special child thought the tobacco children had the right idea, so he put his head on his desk and slept through the As and the Bs and the Cs.
He won't learn, he doesn't learn, he can't learn, the teachers tell the mother. He talks back to his teachers, tries to correct their speech. He was rude to kind Mr. Clary when he came to show the class some magic tricks. You better get him tested. He might be retarded. And he runs funny.
The special child is supposed to be playing at the General Electric Appliance dealer's house with his son David. The son has a tube you blow into and a Mercury capsule shoots up in the air and floats down on a plastic parachute. The special child may have to steal it, but first he decides to go to visit Miss Perk's. Maybe she has a book or something. Miss Perk does not disappoint. She is glad to see the special child. She tells him that the Russians send men up in Mercury-capsule things and don't let them come back down. She says if you tune your radio in just right, you can hear their heartbeats stop. She says if you ever see a red light in the night sky, it's a dead Russian circling the earth forever. Can I come back and be in your school, Miss Perk? No, you're too big now. Go home.
Back at the General Electric Appliance deal..
Reviews
"Hot damn! And Glory be! Both. This is a wonderful book." —Roy Blount, Jr.
"Mark Richard’s memoir, House of Prayer No.2, is the finest book he’s ever written. No one writes like him. His prose style is both hammerblow and shrapnel. He has written the book of his life." —Pat Conroy
"In this unconventional memoir, we see the yearning of the artist transfigured into faith—an authentic faith that is both struggled for and struggled against in the midst of ceaseless and necessary doubt. Mark Richard says important things about finding one's way, about love in action, about being a father, and he does so with the precision and grace of an artisan from another time. This is some of the finest writing you will ever read." —Amy Hempel
"If Mark Richard could not write, you could not read this. Since he can, you can’t not read it. It is unreal, and Mr. Richard has the wit to make it real." —Padgett Powell
"The precision of the descriptions is marvelous in this memoir of growing up with infirmity. The depth of Richard’s heart is profound, exhilarating, frightening, instructive. House of Prayer No. 2 is a work of high art." —Rick Bass
My guest, Allen Shawn, has a fraternal twin sister, Mary, who is autistic. He's often wondered what her experience of the world is, what she sees, hears and feels. Allen and Mary Shawn were very close until the age of eight, when she was institutionalized. His new memoir, "Twin," is about how Mary's presence and absence affected his life.
Shawn also writes about a secret that his parents kept from him. His father, William Shawn, who was the long-time editor of the New Yorker, had another woman in his life, the New Yorker writer Lillian Ross. That relationship lasted from 1954 until William Shawn's death in 1992.
Allen Shawn wonders how his mother lived under the strain of having a disabled child and a partially absent husband. Allen Shawn is a composer and teaches at Bennington College. His previous memoir was about living with his many phobias, which include agoraphobia, fear of heights, fear of vast, open spaces and fear of closed spaces.
Allen Shawn, welcome back to FRESH AIR. I'd like you to do a short reading from the book, just to set it up for us.
(reading) Mary disappeared from my daily life when we were eight years old, when my parents placed her in an institution for the mentally disabled. And as a reader of my previous book will know, it took me painfully long even to recognize that the event had left a kind of ocean of disquiet in me that manifested itself in panic attacks and a lifelong struggle with agoraphobia and in my difficulties negotiating some aspects of public life, as well as in my reactions to trivial losses.
Indeed, that it was so hard for me to openly disclose my own problems was partially due to my fear of the mental illness that Mary had exhibited and which had led, or so it had seemed to me as a child, to her being ostracized from the family.
I suppose that as her twin, it was doubly hard for me to know how and where to draw the boundary line between her nature and mine, between the inherent strangeness of being a person and the kind of strangeness that led to what I saw as banishment from normal human society.
Yet, I wasn't aware of any of this when I was growing up. It wasn't until I reached late middle-age that I could even begin to acknowledge that being Mary's twin was a central fact, perhaps the central fact, of my life.
GROSS:
That's Allen Shawn, reading from his new memoir "Twin." It must have been so confusing to be a twin and do everything together - sleep together, eat together - and then suddenly your twin is moved to another room, and then your twin is moved to an institution for the mentally disabled.
Did you sense, before she was taken away, that something was wrong, that you were different or she was different?
Mr. SHAWN:
Yes, I think - from my earliest memories, I think I was aware of Mary as being on her own track and in a way, needing to be explained not only to my friends but even to my parents at times. I was sometimes like a kind of a go-between between Mary and my parents, as I remember it anyway.
But this was such a fact of life that, you know, I wasn't terribly conscious of the idea that there might be another way to be a twin or that there were families with no such issues in them.
GROSS:
There were things that she did that were considered very unusual. She had an obsession with her right arm. She would kiss it and smile at it, and when she was upset, she would scream unusually long and loud. She sometimes smeared the wall with feces. Did that just seem normal to you because you grew up with it?
Mr. SHAWN:
It did. It seemed completely normal. And to be honest, I may have written this book, but I still find it very difficult to talk about as something strange, and I feel a great deal of shyness about the subject.
There's a funny experience that you have when you're writing that is unique. You can say things that, on print, even knowing that others are going to read them, that are very hard to talk about in person. And...
GROSS:
It sounds like this is, in part, an impulse to protect your sister.
Mr. SHAWN: Definitely. Well, writing the book was very difficult from that point of view. I constantly was asking myself, well, what would she feel about my saying this? And yet, that question is - it's not only unanswerable, it's really unaskable.
I did talk to her briefly about the fact that I was writing this book, but I'll never really know if she understood what I was asking.
GROSS:
Yeah. When your parents realized that Mary had a disorder, they moved her to a different room. Then they moved her to an institution. And you say your parents started to try to protect you from her and encourage you to think of yourself as simply an individual, as opposed to a twin.
Mr. SHAWN:
Right.
GROSS:
How did being an individual feel different from being a twin?
Mr. SHAWN:
I don't think I've ever felt like an individual the way a non-twin does. And I haven't taken a survey of twins, of course, but I literally feel like a bookend, you know, as if there were a set of books next to me, and at the other end of those books, there was another bookend.
I have a sense of being a part of a pair of things. And even in relation to Wally, my brother, I feel in some sense that he's an individual but that I am part of something.
GROSS:
What did your parents tell you when they sent Mary away?
Mr. SHAWN:
Well, it happened in stages. The first stage was that she went to a summer camp for children with mental disabilities. And so, we were told that she was going to this camp, and certainly the impression was that she was doing very well there and very happy and far happier than she'd been in New York City.
And the next stage was that my parents said that Mary would be staying there.
GROSS:
What is your twin sister's official diagnosis?
Mr. SHAWN:
Well, today she's diagnosed as autistic and still says she suffers from schizoaffective disorder on her diagnosis, although I'm not convinced myself that that's accurate. And she's mentally retarded, as well.
It's possible to be autistic, as you know, and be very high-functioning. And she - she's in some ways like a third-grader or a second-grader in terms of her reading skills, for example. She's very good at certain mathematical operations. Other things mean nothing to her. But certain things, she's far better than I am, that's for sure.
GROSS:
When your sister was first diagnosed, it was a time when parents were often blamed for their child's autism, that it was something the parents did wrong. Did this happen to your parents?
Mr. SHAWN:
Well, obviously we weren't sitting around discussing this. As you know from the book, we barely touched on the subject. I certainly remember soaking up the idea that maybe Mary could be cured of her problems.
There was a tremendous amount of fantasy about Mary in the family, at least it seems like fantasy now. I used to wonder if she was pretending to not be well. I still feel that there is a kind of intelligence in her that simply is on a different wavelength from mine or yours and that we just don't have the right receiving instruments to decode what she's thinking and to comprehend her kind of intelligence.
But certainly a fantasy was that she could be cured. And that would imply that there was a cause in the world for what was ailing her, which suggests that on some level I wondered if I or my parents had harmed her in some way and made her withdraw into herself.
This thought was certainly not just a fantasy because at that time, most parents of autistic children were told by their pediatricians that it was probably the result of, usually, coldness on the part of the mother. And it's an appalling thing to think that parents in that era were first saddled with the unimaginably difficult task of trying to raise a child who is just not responding to them and secondly, being told that it's something they're doing that has caused this, even though they may have other children who are relatively OK.
GROSS:
And you're talking about the 1950s and the early 1960s.
Mr. SHAWN:
Yes. We were born in 1948. So we're talking about the '50s, early '60s.
GROSS:
If you're just joining us, my guest is the composer and music professor Allen Shawn, who has written a new memoir called "Twin," and it's about being the brother of a twin sister who is autistic and, at the age of eight, was sent away to an institution.
Allen Shawn's father is William Shawn, the late editor of the New Yorker magazine, and his brother is Wallace Shawn, the writer and actor. Let's take a short break here, and then we'll talk some more. This is FRESH AIR.
(Break)
GROSS:
If you're just joining us, my guest is Allen Shawn. He's a composer and music professor at Bennington College, and he's the author of a previous memoir that was about his phobias. His new memoir, "Twin," is about being the brother of a twin sister who, at the age of eight, was sent away to an institution because she's autistic.
Now, you later learned that there was another big problem in your family, which is that your father was having an affair with Lillian Ross, a writer at the New Yorker, and this is when he was editor of that magazine.
And this lasted until your father's death, and he'd have dinner with your mother every night and spend the night at home, but he'd also spend time most days at Lillian Ross' home or at least with her, wherever they were.
And I'm thinking, like, what a strain this must have been on the family to, on the one hand, have an autistic daughter who is sent to a special institution and, on the other hand, to have your father having such a long-term affair. It lasted until the end of his life. It started in 1954 and lasted until the end of his life.
Mr. SHAWN:
Right. I didn't, in fact, know about this relationship until I was close to 30 years old. And I certainly didn't know Lillian's name or anything in detail at all about the relationship. And I heard about it only by chance, in fact.
GROSS:
By chance, not from your father but from somebody else?
Mr. SHAWN:
No. In fact, to call it an affair when it lasted such a long time is - it's a funny word. We don't really have language for these things, do we?
GROSS:
No, it's almost like a parallel marriage.
Mr. SHAWN:
It is. I mean, there's so much one never knows about a marriage. My own memory of my parents as a married couple would certainly surprise any listeners who, you know, would expect to see a dead, finished marriage that's sort of just progressing in a pro-forma way, and they're imagining that my father's real life was elsewhere.
I mean, obviously he loved both women. Well, perhaps it isn't obvious because, as I say, we don't have language for these things. The extent to which he loved our mother can hardly be overstated. And he expressed it in hundreds and hundreds of little notes that he left her and an incredibly beautiful poem he wrote on their anniversary - in the last 15 years, anyway, of his life.
GROSS:
During an early evaluation of your sister at one of the institutions that she was in, the doctor wrote: "Father is a rather short, very anxious man who is editor of the New Yorker magazine. Mother is also a very anxious woman. Both parents seemed reluctant to convey any information about the nature of their anxiety or its cause. I have the sense of some sort of mutual protective alliance underway. I could not discern the basis for this or be sure who was protecting whom."
You know, I read that, and I thought, were they kind of unknowingly in this kind of protective relationship and the doctor picked up on it, and what the doctor was picking up on was this secret relationship that your father had?
Mr. SHAWN:
Well, they were born secretive. I mean, they were secretive about so many things, including my father's own phobias, the difficulty he had getting to that institution, for example; the fact that they were both seeing psychiatrists.
Nobody ever knew that, or at least very few people knew it. I certainly didn't know it. My mother used to say quite often, about many different things: Now, don't mention that. Don't mention this.
Our Jewishness was not actually denied but it was very much soft-pedaled. When I started having my problems with phobias, my parents said, well, just don't tell anybody about it.
So there was a lot of secrecy. So I don't think it was only his, what people call double life, by any means, that they were concealing. I think they had a very strong sense of privacy. I have it myself, and I'm sure Wally does, too.
GROSS:
Well, you're not helping with the memoir.
(Soundbite of laughter)
Mr. SHAWN:
Yes, it's a funny thing, isn't it?
GROSS:
Yeah, yeah. So - but I'm thinking about the burden it must have been to carry around so many secrets. I mean, like don't tell people about your sister, don't tell people about your father's phobias, don't let on you're really Jewish, don't tell people about your own phobias. And you probably sensed that there was a secret that your father was keeping, even though you didn't know it was there.
Mr. SHAWN:
You know, people have asked me that, and it sounds like it must be true. But it was a very complicated household, and it's very much like a late-19th-century, early-20th-century, you know, Viennese household.
It feels like I'm remembering something that happened at least a century ago or more. It was very, very complicated. There were lots of little hidden rules, and the rules were not explicit very often.
In fact, sometimes the rules themselves were secret. If you pointed out a certain thing - well, for example, you mentioned that my father was short. Well, we were all short, and those of us who are alive are still short. And I remember once saying that we were short, and that elicited an hour-long debate and discussion, and believe me, there was no doubt about it.
(Soundbite of laughter)
GROSS:
Do you think your parents did the right thing in sending your twin, who is autistic, to an institution?
Mr. SHAWN:
Well, the options available to them at that time were very, very few. I think - obviously, I've asked myself this question, and some people have already written me and asked me, you know, whether I think this was barbaric and so on.
Mary was a very, very unhappy child. There were very few people who could understand how to comfort her, how to soothe her. She would run through the corridors of the house screaming, sometimes screaming and holding her ears, as if her own screams frightened her.
Sometimes she would be peaceful and she would look very contented. Sometimes she would be very absorbed in things. But quite often, she was very, very unhappy.
Mary was an outsider at schools for the so-called normal. There really was no place for her to go to school with her peers. Then they found a place in a beautiful part of Cape Cod, Chatham, Massachusetts, on the water.
There was a routine there that was fun. There were kids there that Mary played with. She had her first real friends. She seemed happier. She looked happier. And as I say, there wasn't that much understanding of the kind of condition that Mary had.
But anyway, yeah, I mean, I think given the options they had, they made the decision that, you know, good people would make, you know, under those circumstances.
GROSS:
Allen Shawn will be back in the second half of the show. His new memoir is called "Twin." Shawn is a composer and pianist. Here he is performing one of his compositions. I'm Terry Gross, and this is FRESH AIR.
(Break)
GROSS:
This is FRESH AIR. I'm Terry Gross, back with Allen Shawn.
His new memoir, "Twin," is about how it's affected his life to have a twin sister, Mary, who is autistic. The memoir is also about growing up the son of William Shawn, who was the long-term editor of The New Yorker. Allen Shawn is a composer and teaches at Bennington College.
In trying to understand the mental state of your sister, you say that you think that maybe when you're composing and you're kind of in a composing trance, it may be the closest thing that you experience to what Mary, your sister, experiences.
Mr. SHAWN:
Mm-hmm. Yes.
GROSS:
Outside of other things that you think are close, like when you're sick or exhausted.
Mr. SHAWN:
Right. Well, yeah. In writing this book I was realizing more and more the degree to which I could identify with her. And one of the ways I can identify is in the isolation that she experiences. And when I'm writing music I'm in my own little world and I guess I like to think of that, after writing this book anyway, as my own kind of autistic state.
GROSS:
Why do you think of composing as being similar to being in an autistic state?
Mr. SHAWN:
I think one of the characteristics of Mary and people like Mary is a quality of absorption in small things and a lack of social connectedness. And although I'm reasonably sociable, not as sociable as I'd like to be, but when I'm composing I'm really, deeply alone and it's just me and these notes on the page and these sounds in the air. And that quality of absorption reminds me of the way Mary used to look when she would be studying some plastic necklace on the floor at the age of five and just getting lost in the way the beads connected to each other. So I guess I'm theorizing that we all have an autistic side.
GROSS:
What's your twin sister Mary like now as a woman in her 60s?
Mr. SHAWN:
She has a very different quality when you're with her than she does if you're trying to talk to her on the phone. I spoke to her a couple of days ago and I was thinking about that. She's not someone who's going to originate thoughts and perceptions or ideas or make comments on the phone. She'll be most likely to just answer your questions with either the most routine answer or even a repetition of the question.
But when you're with her, she's intense. She looks at you. She's full of personality. She's full of humor. There's a kind of vibrating, passionate quality to her. As I say, it's almost as if she's repressing all kinds of perceptions of the world that she can't articulate in the way we're used to things being articulated. But you can't expect the give and take with her, even in person, that you can normally with people.
GROSS:
For you, being a twin, and knowing that your twin sister is autistic and that she was taken away from you because of that and sent to an institution, this is a formative experience in your life. This is one of the basic building blocks of who you are emotionally and mentally. But do you have any sense of how much knowledge your twin has of you as being her twin, as somebody who she was once very very connected with and then at the age of eight, separated from?
Mr. SHAWN:
I really don't. She certainly asks after Wally as much as she asks after me. And all I can say is that when we're together she looks very, very pleased. She immediately takes my hand and the connection is instantaneous. I wouldn't differentiate it, though, from the connection she feels for Wally or that she felt for her parents.
I don't think the concept of twin means anything, but I think certain memories are ineradicable in her; you know, the passage of time doesn't mean a thing. So she must carry within her some sense of intense familiarity with me. That's all I can say for sure.
GROSS:
I think about what an extraordinary family that you're from. Your father being William Shawn, the former editor of The New Yorker. Your brother, Wally Shawn, an actor and playwright. You being a composer and music professor. Your sister, autistic. You and your father both sharing a lot of phobias. And also, your father having this huge secret that he was having an affair for most of his marriage, from 1954 till his death in the '80s, with Lillian Ross. It's such a mix of kind of like talent and secrecy and phobia and eccentricity.
And so, you know, I know you found out kind of accidentally when you were 30 that your father was having an affair. I know you kept it from your mother until your father got sick.
Mr. SHAWN:
Right.
GROSS
What happened after you found out from somebody else, who had a little bit too much to drink...
(Soundbite of laughter)
GROSS:
...that your father was having this affair? Did you tell your father that you knew? Like, what happened after that?
Mr. SHAWN:
Well, at that point I wasn't sure if I believed this. And, of course, it wasn't described as an affair so much as a way of life. I think the thing that disturbed me the most, to be honest - this may offend some listeners. What really disturbed me was that everybody else knew about this and that it seemed like we'd grown up in a strange bubble of not knowing this very, you know, simple and basic fact of his life.
I can see now how it happened. But rather than think, oh, what a terrible thing he did, I thought how terrible it was that both my parents thought it was fine that we would just find out, you know, 40 years later by chance, maybe when we couldn't even discuss it with them. So at that point, I was very eager to talk to him about it and we did have some wonderful long talks about it.
GROSS:
He told your mother. Your mother knew. Your mother decided that she was willing to live that way and they both kept the secret from you and your brother, Wally.
Mr. SHAWN: That's right. And I think it was something she never came to terms with and never accepted. But the one thing she couldn't tolerate was its being discussed with us - with the boys, as we were called at that point.
GROSS:
So when you told your father that you knew, he told you not to tell your mother that you knew?
Mr. SHAWN:
Yes. And he explained...
GROSS:
That must have been so hard to do. I mean, we were talking about keeping secrets in a family. But, like, to know that she knew and then to know yourself and yet not to be able to acknowledge to her that you knew and that you knew that she knew, I mean, what a huge secret.
Mr. SHAWN:
Right. Well, one of the ironies of this is that constraint of that kind really interferes with having a good loving relationship. So...
GROSS:
Well, it forces you to lie. It forces you to both lie.
Mr. SHAWN:
Yes. And to see her lying and to know she's lying, and it's a circular thing. The sad thing is that it wasn't until she and I talked about this that I felt as close to her as I really would have all along. It was a barrier. I hadn't known there was a barrier to full understanding of my father's life. But I was highly conscious of the fact that there was this barrier between me and my mother after I knew this.
GROSS:
When she started opening up to you, did you get a sense of what was in it for her to live in a relationship where your father had a lifelong relationship with another woman at the same time? She was willing to accept that.
Mr. SHAWN:
She was...
GROSS:
So what was in it for her, on her end of accepting that, as opposed to what a lot of women would do, which is give an ultimatum, like, you can't be married to two people so choose her or choose me, you can't live with both?
Mr. SHAWN:
Well, obviously they all decided at some point that you can be married to two people. I think it wasn't that she accepted it. She accepted him. She deeply loved him and their relationship was still alive. It certainly wasn't a matter of just convenience that they stayed together. But also for his part, I think that this kind of duality was something in him. He was incapable of making a choice either. And one way of looking at it is perhaps this was also necessary for their marriage.
As I say, there is a lot you don't know about any marriage. Because perhaps it was even more alive than it would have been otherwise. That's possible. When I think back to the atmosphere at home, yes, there were mysteries, but there was also love and romance in the air.
GROSS:
Seeing your parents' unusual relationship and watching them parent you and your brother, as well as your autistic sister, did that make you any more enthusiastic or reluctant to enter into a marriage yourself and to become a father? Were you afraid if you became a father that your child would have developmental problems? Were you afraid if you became a husband that you'd have to have two marriages instead of one? I mean, you were exposed to such extremes in your own family.
Mr. SHAWN:
Well, I probably should have been afraid.
(Soundbite of laughter)
Mr. SHAWN:
But I entered into my first marriage and parenthood of my first two children very unaware of how burdened I was by all of these issues. But I think the net effect of all of that was to make me feel quite strongly about family and to want to be a parent. So you're going to have to figure that one out, Terry. But I think that's the effect it had on me.
Collette Waller can't read her poems out loud any more. In fact, there are lots of things she can't do any more. She can't walk, can't talk, can't swallow. She is confined to her bed and her wheelchair, and fed through a tube in her stomach.
She can still smile though, grin even, and turn a pair of still-bright eyes on you and make a noise – an exaggerated exhalation, a sort of throat snort – that is, quite plainly, a laugh. She does this often. Even pale, puffy, unable (literally) to move a muscle, a cloth under her chin to catch the dribbles, she's a force of nature.
"She's a stubborn old mare," kids her partner, Paul Giannini, ruffling her hair. "To be honest, you couldn't print what we feel about what's happened, Collette and me. It's so often the good people, isn't it? People who make other people's lives better. She was so busy, so giving. So many friends. She'd played netball for south-east England, you know. She's no muppet."
Fortunately, a recording exists of Collette reading some of her verse, and a small anthology, Party Girl. You can tell from the DVD that her speech was beginning to go even then, a couple of years ago; she slurs some words, stumbles over others. It makes the poems, by turns bitter and humble, funny and furious, savage and insightful, all the more powerful.
They are about the dreadful, sometimes unbearable frustration of a young woman – Collette is still only 39 – who has a particularly aggressive form of multiple sclerosis. There are "shits" and "bollocks" and "fucks" aplenty, but also poignant, wrenching lines about mistaking a streetlamp for the sun; being manhandled by strangers; struggling to drink from a mug. About numb bums, and constantly having to say sorry, and desperately wanting a dog just so she could walk it.
"I admit to being," she writes in one, "somewhat miserable at times/ I think I have good reason/ It's not as if it's just a bad hair day." Or again: "When I'm around others who have MS/ It frightens the shit out of me/ All these poems are saying just one thing/ I'm scared of getting worse." Several mention her tears: "My quiet Niagara."
She's not crying today. We're all sitting in a sunlit residents' rest room in St Cecilia's, a Leonard Cheshire Disability home in Bromley, Kent, where she has been since last March. She was first diagnosed with multiple sclerosis in 1996. It had been pins and needles at first; a trapped nerve, they thought. Then she noticed she could no longer control the netball like she used to be able to. Then she started having trouble putting her earrings on.
She and Paul, a plasterer, had known each other since they were teenagers: "She was a friend of my sister's," he says. "Whenever she called, me mum used to say: 'There's that girl who speaks so nicely.' 'Fraid that all went rather downhill once she got together with me."
The first three years after the diagnosis "weren't too bad", he says. Collette was working, in the IT department of the Daily Telegraph. "She could walk, and talk. We had two great holidays, in Kenya and the Maldives. Then, in 1999 it must have been, we went to Cuba and I had to carry her back up the cliff from the beach." Paul says he knew "almost nothing" about MS, and still doesn't really understand exactly what it does, how exactly it stops the nerve cells in the brain and spinal cord communicating, how it "disrupts the signals".
In 2000, they moved in together, Paul going self-employed so he could organise his work around the increasingly hard and stressful task of being Collette's primary carer. In 2004, as she became progressively more incapable, they had to move out of their Victorian semi and into a bungalow. Sometime round about then he proposed to her, at a party on Denmark Hill in south London.
"She laughed at me," he says. Collette grins, and snorts. "She said we'd been to all these exotic places, and you propose to me on Denmark Hill." She still wears the engagement ring, though, around her neck; she had to take it off her finger a while ago because, with so little sensation left, she could never tell whether she was about to lose it.
The poems were published in 2008. Chris Rawlence, artist-in-residence at a hospice to which Collette was going a couple of days a week for respite care, helped nudge her frequently explosive words into shape. "Often when talking with Collette," he writes in an introduction to the collection, Party Girl, "I've been struck by a turn of phrase or an insight that on the face of things is comically mundane yet somehow conveys the essence of what she endures with disarming originality.
"These poems face us with the reality of disability in a way we cannot avoid. Through Collette's unique voice, that can render even swearwords lyrical, she pulls off the remarkable feat of enabling us to experience her isolation, depression, anger and exhaustion with a smile."
It was, frankly, a relief when she finally moved in to St Cecilia's, Paul confesses. He's strong, and willing, but working days and caring nights had become more than even he could bear. "I was against it at first, mind you," he says. "Wasn't ready. But it was the right decision." As with many MS sufferers, Collette's prognosis is now uncertain: she could live like this, stable, for years to come, or she could succumb tomorrow, most likely to an infection. All that's certain is that she won't get better.
But even in her current, cruelly diminished state, she's an almighty, even an uplifting presence. "Collette just gives off good vibes," says Clare Hardman, one of her carers. "There's an energy about her; the relationships she's formed with the staff and other residents . . . You can't help but connect with Collette. People just gravitate towards her." Another staff member, Jo Letts, agrees: "She's still a party girl, in her mind and in her spirit."
Collette always was, says Paul, a girl who "grasped life with both hands, who talked to everyone, who partied every night she could. She just can't communicate that any more. It's the not being able to do anything she hates. Sitting in front of the telly; she loathes it. It's not communicating with people she misses the most." (These days, Collette's communications are mostly confined to nods of the head at an alphabet board).
The whole business is just such a waste, Paul says: a big, total, horrible waste. "But look," he adds, hopefully, "without it all, there wouldn't have been these poems, would there?" Collette beams, eyes shining. "She'd never have written poetry otherwise. Never. Nor had journalists coming to see her. Because of what's happened, you know, she's done something . . . brilliant."
MS I've got MS. My Mum's got MS too. Fucking MS!
The traveller I like to say that I've been here and done this Been there and done that The fact is I ain't been nowhere Recently
The sun The other day I woke and said to Paul Oh, look at the sun And he said to me Collette That sun's the street lamp
My quiet Niagara I've cried more in the past year Than any time in my life. Alone. Alone.
My quiet Niagara I can't stop my silent tears
My quiet Niagara, my silent tears
Because I do not want to be a burden to anyone A lump, a lump.
My quiet Niagara, my silent tears
Scared When I'm around Others Who have MS It frightens the shit out of me All these poems are saying just one thing I'm scared of getting worse
Party Girl – A Collection of Poems, by Collette Waller, is published by Rosetta Life (£4.99). For a copy, contact info@rosettalife.org
PBS also did a great documentary in April called Through a dogs
A documentary about the human-canine bond as told through the moving stories of service dogs and the people whose lives they have changed. The film will transform how audiences see their own dogs.
A stirring, inspiring book with the power to change the way we understand and communicate with our dogs.Few people are more qualified to speak about the abilities and potential of dogs than Jennifer Arnold, who for the past twenty years has trained service dogs for people with physical disabilities and special needs. Arnold has developed a unique understanding of dogs' capabilities, intelligence, sensitivity, and extra-sensory skills. Her training method is based on teaching dogs to make choices — as opposed to following commands — through kindness and encouragement rather than fear and submission, and her results are extraordinary. To Arnold, dogs are neither wolves in need of a pack leader nor babies in need of coddling; rather, they are extremely trusting beings attuned to their owners' needs and they aim to please. Relationships between dogs and humans go awry when we fail to understand our dogs and when we send them confusing, mixed signals. Arnold's firsthand experience — from what moved her to start her exemplary nonprofit and how she developed her methodology — guides this book and gives it a powerful emotional heft. Stories drawn from Arnold's life and the lives of the dogs who were her greatest teachers are convincing, unforgettable, and compelling testimony and make this book a heart-warming, captivating read that will forever change the way you see your dog by showing you the way your dog sees the world.
** you can listen to npr's interview with author Heather Seller's here**
What if you came downstairs in the morning and there was a stranger in the kitchen making you breakfast? What if unfamiliar kids reached out to you at the supermarket? Or you introduced yourself to someone new at a party, only to discover she was someone you've worked with for years?
For author Heather Sellers, that's everyday life. Sellers suffers from "face blindness." She can't recognize or distinguish between different faces. And until she was in her 30s, Sellers had no idea what was truly wrong with her.
She writes about the experience in a new memoir,You Don't Look Like Anyone I Know: A True Story of Family, Face Blindness, and Forgiveness. Sellers tells NPR'sGuy Raz that face blindness isn't a vision problem, but a memory problem: She can see faces, but she forgets them instantly.
"So when I'm looking at your face," she says, "I see you. But if I look away from your face, I can't tell you if you're wearing glasses, or what color your eyes are, or if you have a beard or not.
"I go by your hair, I've got a really great memory for clothes," Sellers adds. She's also good at recognizing people from far away, just by watching them walk.
"I think that's what's most confusing about this disorder," she says. "I recognize people all the time, except when I don't, and I never know which is which. ... It's very confusing."
Chaos At Home
Sellers was in her mid-30s before she'd even heard of face blindness. And that discovery was intimately linked to another revelation: that her parents were not just quirky, but genuinely mentally ill.
She believes her mother was schizophrenic and paranoid, covering up televisions and paintings, nailing the windows shut and forbidding young Heather to answer the phone. Her father, an alcoholic cross-dresser, brought drifters home to sleep on the couch. Occasionally, they broke into her room and stole her jewelry.
In the midst of all this chaos, Sellers was struggling with her undiagnosed face blindness. "My parents noticed my confusion and anxiety," she writes. "They thought I was crazy. For most of my life, I thought they had that much right."
But Sellers says she loves her parents and feels no bitterness about the difficulty of her childhood. "I set out to write this book about how I came to terms with my own experience, how I came to see. And I ended up writing a kind of love story, this book about how we love incredibly flawed people."
"The Gift Of Face Blindness"
Sellers says that, in a strange way, her inability to remember faces served her well as a child, because it taught her to cope with uncertainty. That ability is still useful to her as an adult and a writer.
"I think a lot of brilliant, talented writers have a hard time staying in that chair long enough to get through the inevitable chaos that comes when you sit down to make a piece of art, and I've got a high tolerance for not knowing," she says.
"I can sit and not know the heck out of a thing; I've been doing it my whole life," she says. "And I've trained myself, when I don't know, to not freak out, to just keep looking closer."
For years, Sellers looked for a cure, an end to her face blindness. But now, she says, she would never give it up. "It's allowed me to engage with the world in a meaningful way, and to talk to people with depth and authenticity. I don't know that I would have come to that without this disorder."
Face blindness "forces me to say right away the most vulnerable thing I could say to someone: I may not know you, but I want to."
Excerpt:
'You Don't Look Like Anyone I Know'
We left for the airport before dawn. Dave was driving. His sons, David Junior and Jacob, were in the backseat. I was thirty-eight years old. The landscape we were leaving was like the landscape in a children's book. Shiny new cars beetled to office buildings. Below, the Grand River curved like cursive drawn with a thick silver pen across our part of Michigan. We zipped past bare sun-warm fields on the outskirts of Grand Rapids, down the new highway to the airport, and I snuggled into Dave. I had a strong family feeling. I was eager for him to meet my wild daddy, my dear peculiar mom. Dave was willing, the boys were excited. None of us were awake yet.
Earlier that week, I'd come back to Michigan from upstate New York, where I was working as a visiting writer during my sabbatical year, so we could all go to Florida together. Dave had picked me up at the airport. I saw him before he saw me, walking down the corridor, past the narrow sports bar. Dave always wore running shoes and his walk was a distinctive leaning-forward walk, springy and gentle. I'd noticed this was how fine runners walked: head level, leaning forward. "You're going forward, not up and down," Dave's coach had told him, driving the bounce out of his step and converting it to speed. In college, Dave had been All-Conference. He'd run with Brian Diemer, the Olympic medalist, and Greg Meyer, the last American to win the Boston Marathon. Dave's event was the 10K. Over and above being fast — five-minute-mile fast — the 10K required terrific strength and focus. That pace had to be maintained for a long time, for half an hour. The biggest problem wasn't getting tired, it was drifting, getting lost in the monotony.
Dave had a secret trick. He knew how to make himself see the beautiful cornfields near Caledonia, where he liked to run, instead of what was right in front of him. He could teleport, or bilocate. Dave was confident and sure of himself and calm and humble, all at once. His walk: fast-slow, leaning forward like he wanted to get where he was going while a large part of him was just along for the ride. The entire effect of Dave was hopefulness in running shoes.
I ran up to him and threw my arms around him and stretched up to kiss him; he drew back, pressing me away.
It wasn't Dave. I had the wrong guy.
Dave — my real Dave — came up a moment later; we laughed about my mistake. I was embarrassed he had seen me hugging another man. "So many people here look like you!" I said. "We need to move. To a place with fewer Dutch people." This had happened numerous times before, my mistaking someone else for Dave.
He told me I was funny, and he steered me toward baggage claim.
It had been a decade since I had taken anyone home to Orlando. I rarely visited. The last time I'd seen my parents was three years earlier; the visit had not been a success. My dad could be difficult. My mother could turn on a dime. I'd cut the trip short.
I'd told Dave everything — my dad's drinking, my mom's fragility — and Dave was sensitive, nonjudgmental, insightful. His first wife was a severely disabled schizophrenic: the bar for normal behavior was set reassuringly low. Whenever I called home to check on my parents, Dave held my hand while I shouted into the phone. He even talked to my father a few times. We'd been dating only a few months, and I was temporarily living in another state, but Dave and his sons felt like my family.
Everything was all planned out. My father lived by the airport: we'd drive by his house and the boys could go for a swim in his pool; we'd have a quick lunch. Fred would want to toast to something, so we'd have drinks, play cards, then go up to my mom's for dinner. She was making a roast, shrimp, four vegetables — corn, green beans, beets, carrots — and pies. "I know midwestern men," she'd said. "And I know you don't make pies yourself, Heather. Men like pie. I know you don't like for me to tell you helpful little things, but it wouldn't hurt for you to learn a pie or two."
We'd spend the night at my mom's house. She was setting up pallets for the boys on her living room floor. I'd assured her Dave wouldn't mind a cot in her study; I'd be happy in the guest room. The next day, we planned to take her to Disney World with us. I could see us on the Mad Hatter teacups, spinning, screaming our heads off, ecstatic. The Mad Hatter had been my favorite ride when I was a kid, and later, when I worked at Disney. No ups and downs, no scary things jumping out at you as you churned through dark water tunnels with strangers. You just spun.
Then maybe the boys would go swim in the Atlantic while I stole away to give my speech on the writing process. My speaking engagement was how we were paying for the trip, but I was keeping the talk a secret from my mother: I didn't want her to come.
The last time she'd seen me speak in public was when I was a graduate student and she visited a class I was teaching on Hemingway's short fiction. She'd promised to sit quietly in the back, but she raised her hand anyway. "Didn't Booth Tarkington sell more copies that year? By a long shot?" That evening, she supplied me with a numbered list of twenty-three items "to work on." Make more eye contact. Learn the students' names. She'd tallied the number of times I'd said um.
I felt bad about it, but I didn't want my mother in my world. I was never sure what she would do.
Dave felt it was important I work hard on getting along with her, let her have her way. "She's seventy-three years old," he kept reminding me. "Value the little time left."
So we'd have quality time with her, I'd do the speech in Winter Park on the sly, then I'd take the boys and Dave to my twentieth high school reunion. Dave felt this was too much for one trip, but to me it felt like success, redemption. I wanted my parents and my entire high school to see that everything was okay, that I'd turned out great. Anyway, to be around my parents, we needed a schedule, plenty to do. We had to keep moving. This was the extent of my worry. I was proud of this handsome man who was in love with me, and I was in love with his kids, whose grades had gone from Ds to mostly Bs since I'd come into their lives. As the four of us walked into the airport together, I felt, for the first time in my life, normal.
In the new People Magezine with Michael Douglas on the cover there is a great
interview with Actor Chris Coopers wife Marianne Leone regarding their son Jesse who had Cerebral Palsy , Quadriplegic, unable to speak and wracked by seizures. He past away a few years ago at the age of 17. Marianne wrote a book about her son which I think everyone should read!
Marianne Leone, a screenwriter, essayist, and actress known for her work as Joanne Moltisanti on The Sopranos, and her husband, Academy Award winning actor Chris Cooper, used to joke that if they ever appeared on a daytime talk show, the legend on the bottom of the screen would say “Tragic parents of a severely handicapped child.” But that’s not how it was. Jesse was the knot that tied his family together, the key that unlocked the gift of unconditional love.
In her fiercely honest, sometimes heartbreaking, and always inspiring memoir, Knowing Jesse: A Mother’s Story Of Grief, Grace, And Everyday Bliss, Leone chronicles her transformation by the remarkable life of her son. Jesse had severe cerebral palsy and was quadriplegic, unable to speak, and wracked by seizures; he was also an honor-roll student who loved to windsurf and write poetry.
None of his triumphs came easily. Leone knew that the light of intelligence burned through Jesse’s entire being, but strangers, doctors, therapists, and educators dismissed Jesse as a lost cause. But, she writes, her family was not looking for miracles: they were looking for grace. “See the child, not the disability” became her mantra, and she locked horns with those who would prefer to ignore her son, or worse, tell him he “don’t belong.” For years she battled doctors who treated her son with indifference, searched for caretakers who could connect across a nonverbal divide, and fought to make school districts live up to the law and accommodate her son’s special needs.
Leone also shares her delight when, finally triumphing over a hostile school district, she sees Jesse make friends and excel in his public school classroom. Then, after Jesse’s sudden death at age seventeen, Leone writes, “Everything in my universe was blotted out.” Throughout Jesse’s life, and now, after his death, Leone walks the line between happiness and pain as the outside world relentlessly intrudes.
With warmth and great humor, Leone speaks candidly to families who strive to do right by their children, and explores a mother’s perseverance, grief, and abiding, unconditional love. But Jesse’s story is also the story of millions of American families who are affected by physical and mental disabilities—families who need to know that their children can live life to the fullest, despite physical limitations or societal prejudice. Nothing is impossible. Or, as Jesse wrote in his Latin homework, “amor vincit omnia”—love conquers all.
A Foundation has been set up in Jesse's name, which supports inclusion and adapted sports for disabled people through the Federation for Children with Special Needs and AccesSportAmerica. The foundation also supports disabled orphans in Romania through the Romanian Children's Relief Fund.
Leone has also appeared in films by John Sayles, Nancy Savoca and Martin Scorsese. Her essays and op-ed pieces on a variety of topics have appeared in the Boston Globe. She and Cooper live on a tidal river in the South Shore of Massachusetts with their two rescue dogs, Lucky and Frenchy.
REVIEWS OF THE BOOK
“This book will break your heart. This book will make you angry. It will make you laugh and cry and cheer. But mostly, this book will lift you up.”—Ann Hood, author of Comfort and The Knitting Circle
“In prose so full of life and love and rage and grace it will fill the room where you read it, Marianne Leone tells the story of her son Jesse, a boy with cerebral palsy, a beautiful boy—brave, smart, funny and determined to live his life as part of society, not segregated from it. Sorrow and joy are found in the same breath, but grace abounds and justice finally triumphs.”—Abigail Thomas, author of A Three Dog Life
“Knowing Jesse is an important book for any parent to read. The Coopers’ story forces us to imagine ourselves in their shoes and to face the hard question of whose responsibility it is to speak for children who cannot speak for themselves.” —Richard Russo, author of That Old Cape Magic
“With the gritty honesty of an outraged mother, Knowing Jesse tells of Marianne’s family’s pursuit of justice through hope, courage and love. Knowing Jesse is a story that is familiar to every parent of a child with special needs who struggles with the challenges life places in the path of their child’s living and being, and who knows it is worth it!” —Rich Robison, Executive Director, Federation for Children with Special Needs
“Knowing Jesse’s title mentions grief and grace and everyday bliss. Yes, those elements are included. But that’s a fraction of the fun. Yeah—that's right. I said fun. As in funny. This book made me laugh and cry and then laugh again until I was crying with laughter….This kid’s journey is one of a kind and so is this book….Buy it, read it, and when you are done—read it again.”—Denis Leary, author of Why We Suck and co-creator of Rescue Me
“I was stunned. Stunned and moved to tears. This book is about unwavering courage, unbounded love, and perseverance in the face of adversity. It grabs you by the lapels and takes you on a wondrous, inspiring journey. I couldn’t put it down and I now carry Jesse’s journey in my heart.” —William H. Macy
“A mother’s passion-filled memoir of her fight to give her disabled son the life he deserved....Love for her son and rage at those who did not see him as worthwhile permeate the narrative, which surprises with its humor and frankness.... Leone’s character sketches are deft and humorous, and included throughout are selections of Jesse’s poetry and photographs of the boy with family and friends, attesting to a life that, though short and often painful, was filled with accomplishment, love and joy.”—Kirkus Reviews
Millicent Monks, a descendant of Thomas Carnegie (Andrew’s brother), on a Maine island her family owns.
The paved road has given way to dirt. At its narrowest stretches, with trees all around and hints of the craggy Maine shoreline ahead, it most likely looks the way it did when Millicent Monks’s great-grandfather first bought the entire island, in the 1890s.
Branches brush against the Lexus SUV, and its driver, Ms. Monks’s husband, Bobby, slows to make way for a woman, dressed for the summer rain, who appears on the path.
“That’s my ex-stepbrother’s ex-wife,” Ms. Monks, 75, says as she and the woman exchange waves. “That’s what it’s like around here.”
Indeed. There are 42 families, all loosely related, on this private island in southern Maine, one of the trio Ms. Monks refers to in her memoir, “Songs of Three Islands, a Story of Mental Illness in an Iconic American Family,” recently published by Atlas & Company.
The family of the subtitle is the Carnegies; Millicent’s great-grandfather on her mother’s side was Thomas, brother to Andrew. The first of the islands, Cumberland, off the coast of Georgia, is where generations of Carnegies (and a few of the Rockefellers they married) enjoyed the luxuries of the Gilded Age. It has since become a national park, and was where John F. Kennedy Jr. married Carolyn Bessette.
This second, near Portland, Me., is the one Ms. Monks named Crescent Island in her book, to protect its residents’ privacy. It belonged to her father’s side of the family and is where she now lives.
The third is Northern Island, near the Canadian border, rustic and isolated. Owned by her husband’s family, it is where the couple plan to be buried. Her original house on Crescent Island burned down years ago; it was replaced by an exquisite cottage, regal and homey at the same time.
Determined to maintain their privacy, they joke that it is the “world’s largest one-bedroom house” — with no room for overnight guests or live-in staff. Mr. Monks has learned to cook, so there is no need for a chef. Most of their time is spent on the window-walled second floor, almost Caribbean in its peach and yellow décor, giving it a perpetually sunlit feeling, even on a gray Maine day.
Chasing away the gray is the reason Ms. Monks wrote her slim, lyrical memoir, which tells the physical journey of a family from one island to the next. It also explores, for the first time publicly, the thread of mental illness woven through the seemingly glittering tapestry. Her family, as she tells it, is like any family struggling with a genetic shadow. Hers is also unlike any other family you might know.
It all seems to have begun with Ms. Monks’s great-grandmother, the one known as Mama Negie, left with nine children when Thomas died at the age of 42. She was a powerful matriarch, but she had “spells” of illness over the years, her granddaughter remembered, disappearing into the tower at her grand Cumberland home and not coming out for meals. She spent time at McLean Hospital, a psychiatric institution outside Boston. Her illness was not spoken of by the family, Ms. Monks’s mother told her. “You simply did not talk about such things in those days,” she says.
It’s not hard to glimpse her mother’s regal bearing as she says this, though the daughter, with sad eyes and a warm smile, seems both more fragile and more approachable than portraits of her mother seem to be. Silence was the expectation when Mama Negie’s granddaughter Lucy — Ms. Monks’s mother — began to have “spells,” too. Today, Lucy would have been known as “an unstable or troubled child,” her daughter says, but life on an island helped to “contain” her.
Lucy could be wild and dramatic and impetuous in that untamed space. But when she married and moved to the “real world” — specifically, Boston — and then when her husband left her for what ultimately would be three more marriages (and 11 children), Lucy “broke.” And Ms. Monks was trapped alone with her.
Her earliest memories are of nannies and chauffeurs, of summers on Crescent Island and Easter vacations on Cumberland. But then her mother became fearful, certain that Ms. Monks was filled with poison from the unpasteurized milk her husband insisted the family drink. Her parents began having screaming arguments, complete with shattering glassware.
Atlas & Co.-Mama Negie, Ms. Monks’s great-grandmother and the widow of Thomas Carnegie, and her nine children.
In the years after her husband left, Lucy became a spectral shut-in, hiding behind curtains or sitting motionless for hours in oversized chairs, leaving the house only to find the company of nameless men. For a time she had Ms. Monks hospitalized, begging doctors to clear the poison from her daughter’s blood. The nannies and maids and cooks all quit, saying, Ms. Monks writes, “it’s your mother, I can’t be around her.”
During an afternoon of conversation earlier this summer, Ms. Monks spoke matter-of-factly about her macabre childhood, describing an escape into music and writing and fantasy. With no adult in her life to consistently provide food, clothing or love, she began to fail in school, steal candy bars from newsstands and wear dresses that were several sizes too small. In her dust-covered house she developed odd fears of her own.
“Gradually I became afraid of looking in the mirror,” she writes, “terrified as the years went on that if I looked in the mirror, I wouldn’t see my reflection, but my mother’s face staring back at me ... Even more frightening, though, was my fear that I would look in the mirror and see no one at all.”
Her escape was her marriage to Robert Monks, Bobby to all, a 6-foot-6 member of Harvard’s varsity crew team. He still towers over his wife, and gives the feeling that he is protecting her.
His old Boston family had its own fortune, which, while somewhat modest if your yardstick is the Carnegies, was substantial enough that “when I graduated from law school I became the first member of my family to actually earn a living in 100 years,” he jokes. And, natch, his family owned an island, too.
The couple married in 1954, five months after they met, when they were each 20. Ms. Monks saw marriage as a new start, a chance to leave her mother’s secrets and sorrows behind. Their daughter, whom Ms. Monks calls Sandra in her book, was born two years later, and their son, whom she calls Angus, arrived 18 months after that. The girl was a difficult baby and a troubled adolescent. The only person who could calm her, or who seemed to understand her, was her grandmother Lucy.
It was a call from Sandra’s first-grade teacher that Ms. Monks remembers as the crystallizing moment. “We can’t control her,” the teacher said, suggesting a meeting with the school psychiatrist. It was the first time Ms. Monks remembers thinking, “What if my daughter was ill like Lucy?”
The years that followed were filled with Sandra’s rages, Ms. Monks’s depression, Sandra’s hospitalizations at McLean (where Mama Negie had spent time) and Ms. Monks’s feelings that she was the reason for her daughter’s troubles.
The diagnosis, at first, was paranoid schizophrenia, the same one given to Lucy. Psychiatry in the 1950s placed blame squarely with a patient’s mother. Years of Lucy telling her she was filled with poison left Ms. Monks thinking that she had somehow, psychically, poisoned her daughter, and she wondered if the doctors were right to blame her.
Over the years, Ms. Monks developed breast cancer, and she now believes that the trigger was a lifetime of stress. She founded a dance company, then disbanded it when caring for her daughter became too overwhelming.
She discovered Jungian analysis and Transcendental Meditation and stopped speaking to her own father, though he lived, until his death, in a house within view of hers. He was, she has come to believe, as ill in his own way as Lucy, who was as ill as Sandra. In time, Sandra married, had two children and then divorced. Now 55, she has a house on Crescent Island, and the company of a companion hired by her parents.
Not until 1978, when Sandra was an adult, did her doctors propose a different diagnosis: borderline personality disorder, a condition that was new to the field. Along with its description — a high suicide rate, a tendency toward uncontrolled rage, an inability to regulate one’s impulses, no known effective treatment — there was other news.
“Some in the profession no longer believe a dysfunctional family is the only cause,” Ms. Monks recalls being told, and all these years later her voice still breaks slightly with relief.
The glimmer of absolution in the diagnosis didn’t change life completely, Ms. Monks says in her study in the turret overlooking her father’s old house. But it was the start of a realization that her Carnegie inheritance was more than just a name or an island, but also a legacy of pain.
“Five of the young people” among the family members now living on the island “have been institutionalized,” Ms. Monks said, sweeping her hand across the magnificent view. “So sad.”
Her daughter’s home, though nearby, is not visible from here. According to Ms. Monks, Sandra does not agree that she has borderline personality disorder, but believes she was traumatized by unloving parents. She speaks to them sporadically.
Sandra declined to be interviewed, but sent an e-mail via her lawyer. Noting that her mother quotes directly from Sandra’s journals in her book, which Sandra allowed her to use, she wrote, “my poor mother has taken some of my stories and writings and mixed them all up and put them out of context and sadly created a fantasy of me that she wants others and herself to believe. That people do things like this to each other feels tragic; certainly not in accord with those of us who are trying really hard to bring Light, Love, forgiveness and PEACE into this world.”
She is working on her own book, she continued, “which I believe will shine a tremendous beacon of truth on my actual life.”
Though estranged, mother and daughter run into each other somewhat regularly — in the grocery store, or at the meetings of the family board that owns and runs the island. To live here you must be a relative or a relative of a relative. When children marry and start their own families, they are given land on which to build a house.
Eventually that process “will reach its Darwinian limits,” Mr. Monks explains, over a lunch of lobster chowder he cooked. As happened years ago with Cumberland Island, “sooner or later you have a divide between those who want to sell and take the money and those who see this as a refuge and don’t want to sell.”
When that happens, he predicts “the ones who have some money will buy out the others” and a last vestige of a once powerful family will end.
Ms. Monks seems of two minds about that inevitable moment. On the one hand, she says she feels disconnected from her family tree. When asked whether the moral of her tale is that even the Carnegie name and money could not buy real treatment for generations, she looks confused.
“I don’t think of myself like that,” she says. “I know how naïve I must sound, but I didn’t know, for most of my life, that this was anything special.”
True, the storied name can bring moments of pleasure, like “when Isaac Stern sat next to me at dinner and told me ‘I love Carnegie Hall, it’s the most wonderful place in the world to play.’ ” But more often she wonders “Where were all the Carnegies when I was sitting alone and miserable in my room all those years, hiding from my mother?”
On the other hand, she knows that her lineage gives her visibility, which she needs to spread the word. She certainly didn’t write this book for the royalties. In part she aired family secrets “because by writing about yourself you learn something about yourself,” and she had a lot to learn.
And in part she made this choice because she does not want to be another in a long line of relatives who have coasted on the success of long-dead ancestors, rather than building her own.
“If I can do something worthwhile to help people with children who are mentally ill,” she says, “I would think that was something worth accomplishing in my life.”
SAN
FRANCISCO — Even as audio versions of bestsellers fill store shelves and
new technology fuels the popularity of digitized books, the number of
titles accessible to people who are blind or dyslexic is minuscule.
A
new service announced Thursday by the nonprofitInternet Archive in San
Francisco is trying to change that. The group has hired hundreds of
people to scan thousands of books into its digital database — more than
doubling the titles available to people who aren't able to read a hard
copy.
Brewster Kahle, the organization's founder, says the
project will initially make 1 million books available to the visually
impaired, using money from foundations, libraries, corporations and the
government. He's hoping a subsequent book drive will add even more
titles to the collection.
"We'll offer current novels,
educational books, anything. If somebody then donates a book to the
archive, we can digitize it and add it to the collection," he said.
The
problems with many of the digitized books sold commercially is that
they're expensive, they're often abridged, and they don't come in a
format that is easily accessed by the visually impaired.
The
collections are also limited to the most popular titles published within
the past several years.
The Internet Archive is scanning a
variety of books in many languages so they can be read by the software
and devices blind people use to convert written pages into
speech. The organization has 20 scanning
centers in five countries, including one in the Library of Congress.
"Publishers
mostly concentrate on their newest, profitable books. We are working to
get all books online," Kahle said.
Marc Maurer, president of the
National Federation of the Blind, says getting access to books has been
a big challenge for blind people.
"Now, for the first time,
we're going to have access to an enormous quantity," he said.
Maurer,
who is blind, said that when he was in college, he hired people to read
books to him because the Braille and audio libraries were so limited.
"That
has been the way most students have gotten through school," he said.
"This kind of initiative by the Internet Archive will change that for
many people."
Ben Foss, a San Francisco man with dyslexia, says
having so many more books available is liberating. He compares it to a
million more ramps being added throughout a city for a person who uses a
wheelchair.
"For me, it's about access. They have provided
flexibility and freedom to get books in a format that I use every day,"
said Foss, 36, who is the director of access technology in the digital
health group at Intel.
The digitized books scanned by the
Internet Archive will be available for free to visually impaired people
through the organization's website.
It attacks the central nervous system and eventually renders most
patients disabled. Among its high-profile victims are celebrated cellist
Jacqueline du Pre, whose career was ended by MS, and Joan Didion, one
of America's greatest writers — but they are far from alone.
The National MS Society estimates that there are currently about
400,000 cases in the U.S. and more that 2 million suffer from the
disease over the world. Although there is currently no cure, a
breakthrough finding from a Tel Aviv University scientist and physician
may lead to earlier diagnosis, more effective intervention, and perhaps
even a cure for the autoimmune disease.
Prof. Anat Achiron of Tel Aviv University's Sackler Faculty of
Medicine and vice-dean of research at Sheba Medical Center has uncovered
a new way of detecting MS in the blood through her research at Sheba.
The findings, just published in the journal Neurobiology of Disease, are
expected to pave the way for a diagnosis of MS before symptoms can
appear, allowing for earlier treatment.
"We are not yet able to treat people with MS to prevent the onset of
the disease but knowledge is power," Prof. Achiron says. "Every time we
meet a new patient exhibiting symptoms of MS, we must ask ourselves how
long this has been going on. We can diagnose MS by brain MRI, but we've
never been able to know how 'fresh' the disease is," she says.
Clues for early intervention
If doctors can predict the onset of MS early enough, intervention
therapies using immunomodulatory drugs such as Copaxone or
beta-interferon drugs that stave off MS symptoms, might be used.
"We theorized that if we looked at the geneexpression signature of
blood cells in healthy people, we could look for possible biological
markers that characterize those who subsequently developed MS," says
Prof. Achiron.
Examining blood samples of twenty 19-year-old Israelis who were
inducted into the army as healthy soldiers, and the nine of them who
later developed MS, Prof. Achiron and her team at Sheba were able to use
a "high throughput analysis" using more than 12,000 gene transcripts
expressions. The screening compared similarities and differences in the
blood of those who developed MS and those who did not, eventually
establishing biological markers.
"Those who will develop MS will show a different blood signature from
those who will not," says Prof. Achiron. "When we compared the gene
expression signatures, we saw a similar pattern of the same working
biological processes."
Seeing nine years into the future
These early genetic markers may now be used to test for multiple
sclerosis up to nine years before healthy young adults start developing
symptoms. And because MS is thought to have a genetic component and a
tendency to be found in siblings, Prof. Achiron says the biomarkers can
be used as a tool for brothers and sisters of patients
Why test in advance of a cure? "The idea is that we'll know more about
the genetics of MS through this new discovery, with the hope that early
intervention therapies may be more effective, and help advance medicine
toward a cure," Prof. Achiron says.
By the time a person notices symptoms, significant and irreversible
nerve damage is already done. MS is classified as an autoimmune disease
that afflicts the brain and spinal cord. Symptoms vary, because the
location and severity of each attack can be different, and until now,
there has been no way of knowing who it will strike. The disease causes
the body's immune system's T cells to mistakenly regard the myelin
sheath around our body's neurons as foreign, so the immune system starts
attacking the sheath, causing neurons to short circuit. The disease is
more prelevent in cold climates and attacks twice as many women as men.
This new insight into who will develop MS in the future is a first on
the path of finding a cure to the disease.
Two of the most important drugs that shorten multiple sclerosis
attacks were developed in Israel, and Tel Aviv University is considered a
center of excellence in MS research. Other researchers in the study
include David Magalashvili and Anna Feldman of Tel Aviv University, and
Drs. Itamar Grotto and Ran Balicer of the Israel Defence Forces.
***
American Friends of Tel Aviv University (www.aftau.org) supports Israel's leading
and most comprehensive center of higher learning. In independent
rankings, TAU's innovations and discoveries are cited more often by the
global scientific community than all but 20 other universities
worldwide.
Internationally recognized for the scope and groundbreaking nature of
its research programs, Tel Aviv University consistently produces work
with profound implications for the future.
I
know people who arent blind who will want this (-:
T.O. artist's touchable book adds depth
to sexy subject matter
Lisa J. Murphy doesn't make ordinary books. Most books are meant to
be looked at, read only with your eyes. Hers are meant to be touched.Her book Tactile Mind, which she hand-crafted herself, is
meant to be felt up, to be precise. It is an erotic book for the blind
and visually impaired, though it can be enjoyed by the sighted as well.
A photographer with a certificate in Tactile Graphics from the
Canadian National Institute for the Blind, Murphy learned to create
touchable images of animals for books for visually impaired children.Then she realized that there was a lack of such books for adults
only. "There are no books of tactile pictures of nudes for adults, at
least the last time I looked around," says Murphy. "We're breaking new ground. Playboy has (an edition with)
Braille wording, but there are no pictures."She says that while we live in a culture saturated with sexual
images, the blind have been "left out."There are more than 836,000 Canadians living with significant
vision loss, according to the CNIB. As the population ages over the
coming decade, this number is expected to rise dramatically.
Though porn for the blind sounds like an oxymoron, Murphy assures
that it is not.Tactile Mindis half art object, half artisanal concept
book. It contains explicit softcore images that are raised from its
pages, along with Braille text and photos. The effect of the tactile,
plastic "images" is a bit like that of an ancient Greekbas-relief. Or,
somewhat less precisely, a smutty pop-up book.Creating a tactile book is far from simple, Murphy says. She
recruited some friends and photographed them wearing masks, streamers,
Christmas lights, or nothing at all. That was the easy part.Then she blew up the photos and built on top of them with clay,
being careful to mimic the photo in three (well, two and a half)
dimensions. She baked them until they were hardened, and then covered them
with a layer of special Thermoform plastic that molds to what it touches
when heated up.
A male torso from
Tactile Mind; the Braille message is informational more than lyrical —
he wears a mask, he has a muscular bare chest ...
After being heated in a special machine, the plastic-finished product
is ready to become a plate in the book. The whole process takes Murphy
between 40 and 50 hours. That's for just one image."I was just interested in the challenge," she says. "When you're
dealing with people who can read Braille with their fingertips, they can
feel every error."The book won't fit on just any shelf. It's 13 to 15 centimetres
thick when shut. It displays the visual photos alongside the tactile image based on
them. A Braille description describes what's in the photos, such as
articles of clothing. "It'll say, `He's wearing a mask,' (so readers know) he's not
missing a nose," says Murphy.At $225 per numbered, signed copy, the book is definitely upscale."People love to touch it and look at it," says Jesse Huisken,
co-owner of This Ain't The Rosedale Library. "People think it's
charming; they just can't afford it."The book also retails at fetish store Northbound Leather, where it
is at home among other things tactile. "It is something completely new, something completely different,"
says manager Enza. She says Northbound stocks other erotic toys that emphasize touch
over sight, such as a stimulation device that administers electric
current. It's controlled by manipulating a doll that's attached.The market is growing for erotic toys and pornography made for
people normally left out of the traditional demographic for such
things–that is, white, straight, able-bodied males.The Feminist Porn Awards took place in Toronto on Thursday and
Friday, honouring the kind of dirty movie that "expands the boundaries
of sexual representation on film and challenges stereotypes that are
often found in mainstream porn."Murphy's book lends, uh, depth to her sexy subject matter.Although she lists her CNIB credentials, she says it's unclear if
the advocacy organization would approve of her book. Representatives
were unavailable to comment by press time.
"I think they might be a little conservative," Murphy says.
I think any child being in horrible, intense pain like this, they need
something. And something that I knew that helped me was books.
--Mackenzie
Bearup
Alpharetta, Georgia (CNN) -- A disease that Mackenzie
Bearup compares to a bomb going off in her knee prompted the 16-year-old
to seek escape in the comfort of reading. Now she's helping thousands
of troubled children soothe their own pain -- within the pages of
donated books. "When I read, it's a real escape," Bearup says. "I
try to take myself into the book instead of in the real world where I'm
in so much pain." Her personal discovery that books could be
used to ease discomfort was an idea that Bearup ultimately chose to
share with homeless and abused children throughout the country. Bearup's
journey began six years ago when she was jumping on a bed and dancing
to TV's "American Idol." Suddenly her knee started "hurting
unexplainably, extremely bad," she recalls. The next day, the fifth
grader's knee swelled to the size of a grapefruit. After a week on
crutches, it was even worse. Her knee collapsed when she tried to walk.
After a series of misdiagnoses, doctors later diagnosed Bearup with
Reflex Sympathetic Dystrophy, also called Complex Regional Pain
Syndrome.
The disease causes the nerves and blood vessels in the
affected area to tell the brain "that the injury is still there," says
Dr. James Yost, Bearup's pain-management physician. There is no cure,
Yost said.
From 200,000 to 1.2 million people have RSD,
ranging from mild to severe, according to the Reflex Sympathetic
Dystrophy Syndrome Association Web site."The kind of pain I feel
is very hard to describe," Bearup says. "It will explode at random
times [and] when something touches it, it's like I'm getting stabbed
multiple times." Medications and treatments failed to alleviate
the constant pain in Bearup's knee. At some points, the extreme
discomfort forced her to remain in bed for months, unable to walk. The
only thing that took her mind off the pain, she says, was reading.
So
when her pediatrician told her about kids living in nearby
Murphy-Harpst Children's Center in Cedartown -- a residential treatment
center for Georgia's most severely abused children -- Bearup had an
idea.
"I think any child being in horrible, intense pain like this, they
need something. And something that I knew that helped me was books."
She learned that the center had just built a library, but had no
books to fill it with. "I asked everyone I knew to donate books,
and then I asked them to tell their friends," said Bearup, who spread
the word further by stuffing flyers inside mailboxes, placing ads in
newspapers, and launching a Web site. Bearup's goal was to donate
300 books, but she soon had 3,000
Once the library at Murphy-Harpst reached capacity, Bearup turned her
attention to other places -- providing reading material to youngsters in
homeless anddomestic violence shelters, children's homes and treatment
centers. "Reading isn't just an escape, you can learn a lot, too, and that's
very important for homeless and abused children," said Bearup. "Staying
in high school is one of the things that will help you most in life, to
be able to get a job and be able to support yourself."Since
2007, Bearup has collected and donated more than 38,000 books for
homeless and abused children in six states. With her mother's help, the
teenager launched her official nonprofit -- Sheltering Books
-- in 2009. Although donations are readily accepted, Bearup and
her mom scour garage sales in the suburban Atlanta area to collect
books. With the help of her brothers -- Alex, 14, and Benjamin,
11 -- Bearup sorts the books into categories, such as age, gender and
interest, and delivers them to shelters. She's so far donated
books for libraries and reading rooms in 27 different shelters. "Sometimes
a child will tell me how much they liked a book from a library I've
helped to create and it really makes me happy," says Bearup. "I try to
suggest books that kids will like. And sometimes, when I meet a
10-year-old girl, I'll suggest she check out the books I liked when I
was her age."
To help further encourage reading, Bearup developed
a pamphlet that suggests reading programs for groups, such as crafts
based on books and family bonding through reading. While Bearup still
lives with constant pain, she says she feels better helping others. "If one homeless or abused child finds a love of
reading through books that I've given them, then that will help them in
school and just turn their .
Children without homes
Approximately
330,000 children under age 18 are in emergency shelters or transitional
housing programs over the course of the year.
Source: U.S. Department of Housing and Urban Development
At 9:00 a.m. Jan. 31, 2009, journalistRoxana Saberi's doorbell rang.
She looked at her security system and saw a man standing on her front
porch. The man told her he had a letter for her, so Saberi assumed it
was the mailman and opened the door.
"He handed me a slip of
paper, and I couldn't make much sense of it," Saberi tells Terry Gross.
"I just saw on the piece of paper the word 'Evin.' And my heart started
to beat because I knew Evin prison, the most notorious prison of Iran —
and I said, 'Please, can I just have a moment to take a look at this
because my Farsi isn't very good?' and I tried to shut the door, but I
couldn't because his foot was propping it open."
A native of
Fargo, N.D., Saberi had been working for six years as a freelance
reporter in Iran. She watched as the man and three associates forced
their way into her apartment and confiscated many of her belongings.
"They
kept saying 'Cooperate. Cooperate and you'll be fine. And if not, we'll
have to take you to Evin prison,' " Saberi says. "I learned later that
their definition of 'cooperate' was to confess that I was a spy for
America, and specifically that the book that I was writing about Iranian
society, they claimed, was a cover for spying for America."
Saberi
spent four months in Evin prison, which she recounts in her new memoir,
Between Two Worlds: My Life and Captivity in Iran. Before
Saberi was freed last May, the Obama administration negotiated for her
release, calling the charges against Saberi "baseless." She was released
to her father after being convicted of spying for the United States in a
trial that accused her of "cooperating with a hostile state" and
copying top-secret documents.
"I didn't have any classified
documents," Saberi says. "I had a research article that was public
information, but my captors lied and claimed I had a classified
document, evidently to pretend that there was legitimacy to my case. And
they tried to make me think that the research article I had was
classified."
While in custody, Saberi was told by her
interrogators that if she did not confess to crimes of espionage, she'd
be sent to prison.
"I was under intense psychological pressure," she says. "They
threatened to keep me in prison for many years. My interrogators said,
'We can keep you in prison for 10 years, 20 years. When you come out,
you'll be an old lady. Can you imagine what you'll look like?' And they
also reminded me that espionage can carry the death penalty. And then
they started telling me that, 'We have agents all over the world. You've
seen how capable we are — we can even find your family.' "
Saberi
says she falsely confessed and almost immediately recanted her
statement — even though doing so could potentially cause her to lose her
freedom.
"I felt horrible," she says. "I felt I had lost my
dignity. I felt I had lost principles of truth and honesty that I had
always hoped that I would be able to live up to even under pressure."
After
Saberi recanted, she was tried and sentenced to eight years of prison.
That sentence was later reduced to a suspended two-year term. Saberi
says she believes she was singled out by the Iranian government because
of what she represented.
"I knew that this was the way, after the
Iranian Revolution, that political prisoners had been forced to give
confessions implicating themselves and others," she says. "Not everybody
is forced to give a confession, but it's usually somebody who
symbolizes something like an ideology or a group or a country — like
me."
Hasan Sarbakhshian/AP
After 100 days in Iran's Evin prison, journalist Roxana
Saberi was freed on May 11, 2009.
Excerpt: 'Between Two Worlds'
by Roxana Saberi
Chapter Two
I
sank my head into my flannel-covered pillow and pulled my down comforter
over my cold ears. It was the last day of January, and more than five
weeks had passed since Gholam had promised to send the handyman, but
still my heater was broken.
Most mornings, I was awakened
by the sounds of hammering, drilling, and sawing, as construction
workers erected one new apartment complex after another in my
upper-middle-class neighborhood. But on this Saturday, the first day of
the Iranian workweek, the only sound that reached my ears was the
ticking of my clock.
My eyes turned toward it: 9:00.
Ding-dong.
I flinched. So it was the doorbell that had woken me up. I
rolled over and closed my heavy eyelids. I wasn't expecting any
visitors. Someone was probably mistaking my doorbell for a neighbor's on
the console downstairs as usual.
Ding-dong.
If I
got up to answer it, I wouldn't be able to fall back asleep. Brain
won't function if don't get eight hours of sleep.
Ding-dong.
Whoever it was obviously wasn't giving up.
I
stumbled out of bed and across my living room. The monitor on my video
door phone was lit up, displaying a black-and-white image of an
unfamiliar middle-aged man.
"Yes?" I asked in Farsi.
"Miss
Saberi?" the man inquired with a friendly smile.
"You are?"
"You
have a letter."
It was a mailman, I realized.
"Could you
bring it up, please?" I was too groggy to go downstairs. "I'm on the
fifth floor."
"Certainly."
I buzzed open the door to the
building, then dragged myself back to my bedroom, put on a white
headscarf, and slipped a knee-length black roopoosh over my
pajamas.
A light rap sounded at the door. I opened it just a few
inches. The mailman was standing there with an indecipherable smile on
his face and a piece of white paper in his fist. Saying nothing, he
handed the paper to me through the crack.
My eyes scanned the
page, skipping over most of the words, trying to figure out what this
was all about. My modest Farsi-reading skills, combined with a growing
sense of unease, were hindering my comprehension of what appeared to me
as:
Qeruzjiojitenajkfasdf
azntxcjviorgtneafn
24
hours serjiojasfkjzfnty
znernagyrhgbfg Evin Prison
ewatngnmdfv.
Evin Prison?
I ran my
eyes over the last line again.
"Evin Prison."
My heart
began to pound. This Tehran jail was notorious for having held Iran's
most famous political prisoners, including students, academics, and
activists. Torture was common, and hangings and a mass execution had
taken place there. In 2003, Iranian-Canadian journalist Zahra Kazemi was
detained in Evin and shortly afterward, died suspiciously. No one had
ever been held accountable for her death.
"Excuse me," I said to
the man at my door, attempting to conceal my mounting fear. "I don't
read Farsi very well. Could you give me a moment to look at this more
carefully?"
I tried to shut the door but couldn't. He had propped
it open with his right foot and was now sneering at me.
"No," he
grunted, forcing the door open just as three other men filed out of the
elevator behind him.
I shuffled a few steps back in horror as
they pushed their way into my apartment and quietly shut the door.
Two
of them had the same look as the "Mailman": middle-aged, with scruffy
beards and untucked shirts hanging over dark trousers. The third was
well groomed and younger, perhaps in his early thirties.
No doubt
about it — these were Iranian intelligence agents.
What
could they possibly want from me?
"Did you just wake up?"
one of them asked in Farsi, as he glanced at my pajama pants sticking
out of my roopoosh.
Before I could answer, another
remarked, "Yes, she goes to sleep late and gets up late."
I
turned to look at the agent who had just spoken, shaken that he knew my
sleeping patterns. He was the youngest member of the group, a
clean-shaven man who didn't fit the typical intelligence-agent profile.
Wearing blue jeans, a black leather jacket, and hard-soled shoes that
clicked as he strolled across my tiled living room floor, he could have
fit right in with the youth—- or javan—- of northern Tehran who
often had a Westernized look. "Javan" (who as an agent would never
disclose his real name) surveyed my living room with indifference,
except for a faint look of disgust when he spotted my chador draped over
the piano.
"Do you know why we're here?" the tallest man
said, fiddling with a set of tasbih, or prayer beads, in his
right hand.
I opened my mouth to respond to "Tasbihi," but no
words came out.
"We have the right to interrogate you," he said
evenly, without waiting for a response. "And if we are not satisfied, we
can take you to Evin Prison tonight."
This had to be a very,
very bad dream, worse than any nightmare I could remember.
"Don't
worry," Tasbihi continued, flashing an unsettling grin. "If you
cooperate, you'll be back home this evening. Just do as we say, and
don't leave our sight."
I wanted to make a dash for either my
phone or the door, but all I could do was nod. I recalled what I had
heard about Zahra Kazemi. As the story went, she had been arrested after
taking photos of some prisoners' families outside Evin and then
responded defiantly to her interrogators. Hard-line authorities
initially tried to cover up the cause of her death and later said she
died from head injuries resulting from an "accident." But according to a
doctor who said he examined Kazemi's corpse and escaped Iran to
disclose his findings, the journalist had been raped, her nose broken,
and her skull fractured. She might have made it out all right, an
Iranian official had once told me privately, if she hadn't resisted.
The
four men started sifting through my belongings in the living room. The
Mailman was packing up my laptop and flash drive. Another was tossing
some of my notepads into an empty garbage bag he had taken from my
kitchen.
"You'll get all these back later," Tasbihi told me, as I
looked on, frozen in place in the middle of the room. "We just need to
do a little research first."
Javan began scanning the
titles on my bookshelf. A few books were in Farsi, including two or
three written by the leader of Iran's Islamic Revolution, Ayatollah
Ruhollah Khomeini. The agent skipped over these, as well as my favorite
classics in English, such as Plutarch's Lives, and turned to
other texts I had brought from America. Many had to do with Iran, the
Middle East, and Islam.
"I'm impressed, Miss Saberi," he said
with obvious sarcasm. "You are quite a scholar! What do you do with all
these books?"
"I've collected them over the past six years I've
been living here," I heard myself say, "and now I'm using some of them
to research a book I'm writing about Iran."
As if he didn't
know already. I had always assumed the authorities knew about my
book, which was an independent project I had openly described to the
dozens of Iranians I had interviewed to ensure the regime would realize I
had nothing to hide.
Javan didn't say anything and continued to
peruse my small library. He paused with interest when he came to two
English-language books covered with portraits of Iran's hard-line
president, Mahmoud Ahmadinejad.
"What are these about?" he asked.
They were ordinary books about Ahmadinejad and his policies, I
replied.
He threw the books into the trash bag, which was by now
half filled with the spoils his colleagues had collected. Then he
spotted my cell phone on the kitchen counter and stuck it in his pocket.
The four men made me move on with them to another room, where
they dug through my desk and file cabinet. They confiscated several
music CDs, old videotapes, and bank statements.
When the Mailman
came upon my American and Iranian passports, he smiled triumphantly. I
felt my knees weaken and had to lean against the desk to steady myself.
Without these documents, I wouldn't be able to leave the country. And
with no U.S. Embassy in Iran, there were no American officials here to
help me.
"Don't worry," Tasbihi said, echoing his earlier words.
"Cooperate with us, and you'll get these back later."
But I was
more than worried. I was frightened, bewildered, and furious: frightened
at the prospect of landing in Evin Prison, bewildered by the presence
of four strange men seizing my belongings, and furious at this violation
of my privacy.
My eyes followed the agents as they combed
through some notebooks from my college days that I referred to for
journalism tips and background on international relations. One of the
men began pulling dusty papers and folders out of the closet. He
sneezed. I had meant to throw out that useless stuff, but I had
procrastinated.
Meanwhile, Javan was peeling two photos, one of
Bahman and the other of my family, off the wall. He dropped them into a
fresh garbage bag. Then the men made their way to my bedroom where,
speechlessly, I watched them rummage through my closet and dresser.
"Change
into your regular attire," Javan ordered me, after the agents declared
their search complete. "We're taking you elsewhere for interrogation."
"Why?"
I asked. "What do you want from me?"
"Just cooperate," he said
curtly.
Cooperate. I had no idea what kind of cooperation these
people were talking about.
The men left me alone in my bedroom
with the door open a few inches. I looked out my window. I wished I
lived on the ground floor. From this height, I couldn't expect to
survive if I jumped, and I had neither enough guts nor enough bed sheets
to swing my way down to safety.
My impractical plots unraveled
with a knock on my door. It was one of the men, telling me to hurry. I
changed into jeans and a T-shirt and put on my wristwatch before
throwing on my hejab again.
The four agents escorted me out of my
apartment, lugging their loot with them. The hallway was eerily quiet,
just as it had been when they had entered two hours earlier. Usually my
neighbors or their kids were coming or going or socializing there. Maybe
they had seen the agents and were nervously peering through their
peepholes from the safety of their apartments. I thought of screaming
for help, but I knew that no one would dare interfere with these men,
who were undoubtedly armed.
I was instructed to sit in the back
of the first of two white Peykans, with the Mailman beside me and Javan
next to the driver. As we got onto the highway and headed toward central
Tehran, I stared numbly out the window. The scenes were so familiar,
yet they seemed otherworldly, as if I had fallen into a horrible
fantasy. If only I had known a few hours earlier what was in store for
me today.
I hadn't realized until I had climbed into bed at
four that morning how exhausted I was.
My weariness
stemmed from having sat at my computer for hours that night and from a
growing uncertainty about my future. During the previous few weeks, as
the date of my departure from Iran had rapidly approached, I had lost
much of my usual sense of optimism as I came face-to-face with questions
I had been trying to ignore.
What will come of my book?
I had wondered. I hadn't even found a publisher yet. And what will
happen to me once my book is finished?
As a journalist in
Iran, I felt I had discovered some purpose in my life through my work by
providing news coverage from a country where few foreign journalists
could live and operate.
That was why, when Iran's Culture
Ministry pulled my government-issued credentials in 2006, I felt a
sudden emptiness. I had lost not only my press pass but also a large
part of my identity.
A few other dual-national journalists before
me had been forced to give up their credentials, and many foreign
journalists had seen their visas either revoked or not renewed. The
situation had worsened after Ahmadinejad was elected president in 2005,
replacing a reformist administration with hard-liners. Iranian officials
gave me no clear reason for their decision to pull my press pass,
although they hinted it was part of a larger effort to restrict the
Western media from reporting in the country.
From Between
Two Worlds: My Life and Captivity in Iran by Roxana Saberi.
Copyright 2010 by Roxana Saberi. Reprinted by permission of
HarperCollins. All rights reserve
Jonathan Gottschall, who explores literature's links with science.
To illustrate what a growing number of literary scholars consider the
most exciting area of new research, Lisa Zunshine, a professor of
English at Kentucky University, refers to an episode from the TV series
“Friends.”(Follow closely now; this is about the science of English.) Phoebe
and Rachel plot to play a joke on Monica and Chandler after they learn
the two are secretly dating. The couple discover the prank and try to
turn the tables, but Phoebe realizes this turnabout and once again tries
to outwit them. As Phoebe tells Rachel, “They don’t know that
we know they know we know.”
Haskins Laboratories-An M.R.I. of a brain highlighting areas used during reading.
This layered process of figuring out what someone else is thinking —
of mind reading — is both a common literary device and an essential
survival skill. Why human beings are equipped with this capacity and
what particular brain functions enable them to do it are questions that
have occupied primarily cognitive psychologists. Now English
professors and graduate students are asking them too. They say they’re
convinced science not only offers unexpected insights into individual
texts, but that it may help to answer fundamental questions about
literature’s very existence: Why do we read fiction? Why do we care so
passionately about nonexistent characters? What underlying mental
processes are activated when we read? Ms. Zunshine, whose
specialty is 18th-century British literature, became familiar with the
work of evolutionary psychologists while she was a graduate student at
Stanford in the 1990s. “I thought this could be the most exciting thing I
could ever learn,” she said. At a time when university
literature departments are confronting painful budget cuts, a moribund
job market and pointed scrutiny about the purpose and value of an
education in the humanities, the cross-pollination of English and
psychology is a providing a revitalizing lift.Jonathan
Gottschall, who has written extensively about using evolutionary theory
to explain fiction, said “it’s a new moment of hope” in an era when
everyone is talking about “the death of the humanities.” To Mr.
Gottschall a scientific approach can rescue literature departments from
the malaise that has embraced them over the last decade and a half.
Zealous enthusiasm for the politically charged and frequently arcane
theories that energized departments in the 1970s, ’80s and early ’90s —
Marxism, structuralism, psychoanalysis — has faded. Since then a new
generation of scholars have been casting about for The Next Big Thing.The
brain may be it. Getting to the root of people’s fascination with
fiction and fantasy, Mr. Gottschall said, is like “mapping wonderland.” Literature,
like other fields including history and political science, has looked to the technology of brain imaging and the
principles of evolution to provide empirical evidence for unprovable
theories. Interest has bloomed during the last decade. Elaine
Scarry, a professor of English at Harvard, has since
2000 hosted a seminar on cognitive theory and the arts. Over the years
participants have explored, for example, how the visual cortex works in
order to explain why Impressionist paintings give the appearance of
shimmering. In a few weeks Stephen Kosslyn, a psychologist at Harvard,
will give a talk about mental imagery and memory, both of which are
invoked while reading. Ms. Zunshine said that in 1999 she and
about 10 others won approval from the Modern Language Association to
form a discussion group on cognitive approaches to literature. Last
year their members numbered more than 1,200. Unlike Mr. Gottschall,
however, Ms. Zunshine sees cognitive approaches as building on other
literary theories rather than replacing them. Ms. Zunshine is
particularly interested in what cognitive scientists call the theory of
mind, which involves one person’s ability to interpret another person’s
mental state and to pinpoint the source of a particular piece of
information in order to assess its validity.Jane Austen’s novels are
frequently constructed around mistaken interpretations. In “Emma” the
eponymous heroine assumes Mr. Elton’s attentions signal a romantic
interest in her friend Harriet, though he is actually intent on marrying
Emma. She similarly misinterprets the behavior of Frank Churchill and
Mr. Knightly, and misses the true objects of their affections. Humans
can comfortably keep track of three different mental states at a time,
Ms. Zunshine said. For example, the proposition “Peter said that Paul
believed that Mary liked chocolate” is not too hard to follow. Add a
fourth level, though, and it’s suddenly much more difficult.
Experiments have shown that understanding drops off by 60 percent, Ms.
Zunshine said. Modernist authors like Virginia Woolf are
especially challenging because she asks readers to keep up with six
different mental states, or what the scholars call levels of
intentionality. Perhaps the human facility with three levels is
related to the intrigues of sexual mating, Ms. Zunshine suggested. Do I
think he is attracted to her or me? Whatever the root cause, Ms.
Zunshine argues, people find the interaction of three minds compelling.
“If I have some ideological agenda,” she said, “I would try to construct
a narrative that involved a triangularization of minds, because that is
something we find particularly satisfying.”Ms. Zunshine is part
of a research team composed of literary scholars and cognitive
psychologists who are using snapshots of the brain at work to explore
the mechanics of reading. The project, funded by the Teagle Foundation
and hosted by the Haskins Laboratory in New Haven, is aimed at improving
college-level reading skills. “We begin by assuming that there
is a difference between the kind of reading that people do when they
read Marcel Proust or Henry James and a
newspaper, that there is a value added cognitively when we read complex
literary texts,” said Michael Holquist, professor emeritus of
comparative literature at Yale, who is leading
the project. The team spent nearly a year figuring how one might
test for complexity. What they came up with was mind reading — or how
well an individual is able to track multiple sources. The pilot study,
which he hopes will start later this spring, will involve 12 subjects.
“Each will be put into the magnet” — an M.R.I. machine — “and given a
set of texts of graduated complexity depending on the difficulty of
source monitoring and we’ll watch what happens in the brain,” Mr.
Holquist explained. At the other end of the country Blakey
Vermeule, an associate professor of English at Stanford, is examining
theory of mind from a different perspective. She starts from the
assumption that evolution had a hand in our love of fiction, and then
goes on to examine the narrative technique known as “free indirect
style,” which mingles the character’s voice with the narrator’s.
Indirect style enables readers to inhabit two or even three mind-sets at
a time. This style, which became the hallmark of the novel
beginning in the 19th century with Jane Austen, evolved because it
satisfies our “intense interest in other people’s secret thoughts and
motivations,” Ms. Vermeule said. The road between the two
cultures — science and literature — can go both ways. “Fiction provides a
new perspective on what happens in evolution,” said William Flesch, a
professor of English at Brandeis University. To Mr. Flesch
fictional accounts help explain how altruism evolved despite our selfish
genes. Fictional heroes are what he calls “altruistic punishers,”
people who right wrongs even if they personally have nothing to gain.
“To give us an incentive to monitor and ensure cooperation, nature
endows us with a pleasing sense of outrage” at cheaters, and delight
when they are punished, Mr. Flesch argues. We enjoy fiction because it
is teeming with altruistic punishers: Odysseus, Don Quixote, Hamlet,
Hercule Poirot.
“It’s not that evolution gives us insight into
fiction,” Mr. Flesch said, “but that fiction gives us insight into
evolution.”
The Immortal Life of Henrietta Lacks
tells the story of a forgotten woman whose endlessly dividing cells
have led to some of the most important discoveries of modern medicine.
Tissue taken without her consent when she was being treated for cancer
at Johns Hopkins Hospital in 1951 became the first line of cells that
could be grown in the laboratory, a holy grail of science at the time.
Lacks' unwitting contribution to science marked a major
turning point in research. The book also tells
the sometimes heartbreaking story of her family, who only decades after
their mother's death truly understood what had happened to her. USA
TODAY spoke with author Rebecca Skloot.
Q: Who was Henrietta Lacks?
A: She was a poor African-American tobacco farmer
from southern Virginia who moved to Baltimore during World War II so
her husband could get work in the steel plants. She was a mother to her
five kids and to sort of everyone else. She would open up her house to
anyone who came up looking for work. Sometimes she'd have 12 people
sleeping in her halls. She'd cook these huge meals. She was this real
caretaker.
Q: How did she die?
A: Henrietta had cervical cancer. She found the
tumor herself, in 1951, when she was 30 years old. She was treated in
the charity "colored" ward at Johns Hopkins Hospital, and she died there
eight months later, age 31.
Q: Why did doctors take her cells?
A: Scientists had been trying to grow human cells
in the lab for decades and had never been able to. The Pap smear had
been developed in the 1940s, so they were taking samples from every
woman who walked in.
Q: What happened to the sample?
A: Her doctors sent it down the hall to George
Gey, who was the head of cancer research at Johns Hopkins. His lab
assistant, Mary Kubicek, took the cells and cultured them. She labeled
them HeLa cells, for Henrietta Lacks.
Q: What was so special about the cells?
A: They never died. Gey had collected countless
other cells, and they all died. But hers lived. They're still living,
60-some-odd years later. No one knows why. It's the mystery of HeLa
cells. She had the human papillomavirus and she also had syphilis, which
weakened her immune system. The only theory at this point is that there
was some interaction among all of these elements that prevented them
from dying off.
Q: Did the hospital ask permission?
A: No. It was very standard at the time to take
cells and tissues from people without their consent.
Q: What happened to her cells?
A: A factory was set up to mass-produce them at
the Tuskegee Institute in Alabama. They were producing about 3 trillion
HeLa cells a week and sending them to labs around the world.
Q: What were they used for?
A: Everything. To create the first polio vaccine.
They went up into space, they were the first cloned cells. They were
used to develop cancer medications and drugs for Parkinson's disease.
Q: What are the ethical concerns?
A: The big one people raise is that the doctor
took her tissue without her consent. But really that's the least
controversial, as that was before scientists really could conceive of
the fact that cells could live this long or that you could look at her
DNA and know things about her children.
Q: What about her family?
A: That's been more problematic. Her family was
used in research years later without their consent. No one told them
about the cells until 25 years after she died. Her husband got a phone
call and what he essentially understood was: "We've got your wife, she's
been alive and growing in a lab for 25 years and now we need to test
your children to see if they might have cancer." That was in the 1970s.
Q: Did the family get any money at all from
their mother's contribution to medical science?
A: No. Her family is very poor and they don't
have access to health care or to buy the drugs that their mom's cells
have made possible. Legally, the question of who has the right to profit
off someone else's tissues or whether you have a right to control
what's done with your tissues still hasn't been decided.
Q: What are the cells worth?
A: You can buy a vial of HeLa cells for about
$250.
Q: What does her family think about their
mother's place in scientific history?
A: For her daughter, Deborah Lacks, her mother's
caretaking made the story of the HeLa cells make sense. She feels that
Henrietta was chosen and brought back to life as an angel to continue
taking care of people through her cells.
Handout
The
book cover. Henrietta Lacks' cells, which were obtained without her
consent, were special. "Gey had collected countless other cells and they
all died. But hers lived. They're still living, 60-some-odd years
later. No one knows why. It's the mystery of HeLa cells.
Nujood Ali and her lawyer Shada Nasser leave the stage after being
honored at the Glamour Women of the Year awards Monday, Nov. 10, 2008 in
New York. Ali, a former child bride, was able to get a divorce from her
abusive husband with the help of Nasser. (AP Photo/Jason DeCrow)
Nujood Ali is a 12-year-old girl from Yemen. She lived with her
parents and went to school and lived, by most reasonable accounts, a
normal life. There are a few things about Nujood Ali, though, that make
her a bit different from most children her age. First of all, she's a
published author. Secondly, she's divorced.
At the age of 10, Nujood's parents introduced her to a deliveryman in
his 30s, and informed her that this was to be her husband. She had to
leave school and cried all through her weekend.
As Nicholas Kristof wrote in yesterday's New York
Times, Nujood has become a heroine for women's rights in Yemen, sneaking
away from her home one day to a courthouse and requesting a divorce.
It’s hard to imagine that there have been many younger divorcées
— or braver ones — than a pint-size third grader named Nujood Ali.
Nujood is a Yemeni girl, and it’s no coincidence that Yemen abounds
both in child brides and in terrorists (and now, thanks to Nujood,
children who have been divorced). Societies that repress women tend to
be prone to violence.
For Nujood, the nightmare began at age 10
when her family told her that she would be marrying a deliveryman in
his 30s. Although Nujood’s mother was unhappy, she did not protest. “In
our country it’s the men who give the orders, and the women who follow
them,” Nujood writes in a powerful new
autobiography just published in the United States this week, “I Am
Nujood, Age 10 and Divorced.”
Her new husband forced her to drop
out of school (she was in the second grade) because a married woman
shouldn’t be a student. At her wedding, Nujood sat in the corner, her
face swollen from crying.
Nujood’s father asked the husband not to
touch her until a year after she had had her first menstrual period.
But as soon as they were married, she writes, her husband forced himself
on her.
He soon began to beat her as well, the memoir says, and
her new mother-in-law offered no sympathy. “Hit her even harder,” the
mother-in-law would tell her son.
Nujood had heard that judges
could grant divorces, so one day she sneaked away, jumped into a taxi
and asked to go to the courthouse.
“I want to talk to the judge,”
the book quotes Nujood as forlornly telling a woman in the courthouse.
“Which
judge are you looking for?”
“I just want to speak to a judge,
that’s all.”
“But there are lots of judges in this courthouse.”
“Take me to a
judge — it doesn’t matter which one!”
When she finally
encountered a judge, Nujood declared firmly: “I want a divorce!”
Yemeni
journalists turned Nujood into a cause célèbre, and she eventually won
her divorce. The publicity inspired others, including an 8-year-old
Saudi girl married to a man in his 50s, to seek annulments and
divorces.
As a pioneer, Nujood came to the United States and was
honored in 2008 as one of Glamour magazine’s “Women of the Year.”
Indeed, Nujood is probably the only third grader whom Secretary of State
Hillary Clinton has described as “one of the greatest women I have ever
seen.”
Nujood’s memoir spent five weeks as the No. 1 best-seller
in France. It is being published in 18 other languages, including her
own native language of Arabic.
I asked Nujood, now 12, what she
thought of her life as a best-selling author. She said the foreign
editions didn’t matter much to her, but she was looking forward to
seeing it in Arabic. Since her divorce, she has returned to school and
to her own family, which she is supporting with her book royalties.
At
first, Nujood’s brothers criticized her for shaming the family. But now
that Nujood is the main breadwinner, everybody sees things a bit
differently. “They’re very nice to her now,” said Khadija al-Salami, a
filmmaker who mentors Nujood and who translated for me. “They treat her
like a queen.”
There are a
couple of reasons countries that marginalize women often end up
unstable.
First, those countries usually have very high birth
rates, and that means a youth bulge in the population. One of the
factors that most correlates to social conflict is
the proportion of young men ages 15 to 24.
Second, those
countries also tend to practice polygamy and have higher death rates for
girls. That means fewer marriageable women — and more frustrated
bachelors to be recruited by extremists.
So educating Nujood and
giving her a chance to become a lawyer — her dream — isn’t just a
matter of fairness. It’s also a way to help tame the entire country.
Consider
Bangladesh. After it split off from Pakistan, Bangladesh began to
educate girls in a way that Pakistan has never done. The educated women
staffed an emerging garment industry and civil society, and those
educated women are one reason Bangladesh is today far more stable than
Pakistan.
The United States last month announced $150 million in
military assistance for Yemen to fight extremists. In contrast, it costs
just $50 to send a girl to public school for a year — and little
girls like Nujood may prove more effective than missiles at defeating
terrorists.
Jason Nelson is one of my friends brother. When I was told of Jason's story I had a ton of questions and wanted to learn more about him. The bits and pieces that i do learn of this remarkable guy make me think of the millions of other people i know and you the readers of my blog want to know him.
A Voice No Longer Silent
By Jason Michael Nelson
Editorial Reviews
Born with severe cerebral palsy that left him unable to move or speak, Jason Michael Nelson longed to express his thoughts, feelings, and desires. Though he could answer yes or no in response to questions, he was forced to remain a passive observer through events that dramatically affected his well-being.
Jason's life began to change when he was introduced to specialized software that allowed him to communicate more effectively. Using a headset and computer, he painstakingly typed his life story so that he could share his experiences with the world. What he has to say will inspire you.
Excerpt
Bill Shea had once been hospitalized for a thyroidectomy, leaving him unable to speak for a couple weeks. He asked a friend to bring him his computer and voice synthesizer to the hospital, where he nearly drove the nurses crazy as he worked at developing a new speech program.
One afternoon, Mr. Shea came to Miss Handlon's room and asked if he could take me for awhile. Miss Handlon said, yes because I had done all of my work.
Bill wheeled me down to his classroom, telling me nothing until we arrived. Then he told me he'd developed a computer program for me. It was a scanning program, and it talked. Within a few minutes, I was talking, through the use of a voice synthesizer.
A few minutes later, Mr. Shea was on the phone to my mom, saying, "Your son has something that he wants to say to you."
I cued in the phrase and said, "I love you, Mom."
Instantly my mom started to cry tears of joy. After I got home from school, I could see in my mom's eyes just how proud she was of me.
If you are interested in Jason's book you may buy it on Amazon.com
Two Pulitzer Prize winners expose the most pervasive human rights violation of our era...the oppression of women in the developing world...and tell us what we can do about it.
An old Chinese proverb says "Women hold up half the sky." Then why do the women of Africa and Asia persistently suffer human rights abuses? Continuing their focus on humanitarian issues, journalists Nicholas Kristof and Sheryl WuDunn take us to Africa and Asia, where many women live in profoundly dire circumstances...and some succeed against all odds.
A Cambodian teenager is sold into sex slavery; a formerly illiterate woman becomes a surgeon in Addis Ababa. An Ethiopian woman is left for dead after a difficult birth; a gang rape victim galvanizes the international community and creates schools in Pakistan. An Afghan wife is beaten by her husband and mother-in-law; a former Peace Corps volunteer founds an organization that educates and campaigns for women's rights in Senegal.
Through their powerful true stories, the authors show that the key to progress lies in unleashing women's potential, that change is possible, and that each of us can play a role in making it happen.
Half the Sky is a call to arms, a call for help, a call for contributions, but also a call for volunteers. It asks us to open our eyes to this enormous humanitarian issue. It does so with exquisitely crafted prose and sensationally interesting material. It provides us with a list of individual hospitals, schools and small charities so that we can contribute to, or at least inform ourselves about, this largely unknown world. I really do think this is one of the most important books I have ever reviewed. I may be wrong, but I don't think so.
Biography
Nicholas D. Kristof and Sheryl WuDunn are the first married couple to win a Pulitzer Prize in journalism; they won for their coverage of China as New York Times correspondents. Mr. Kristof won a second Pulitzer for his op-ed columns in the Times. He has also served as bureau chief in Hong Kong, Beijing, and Tokyo, and as associate managing editor. At the Times, Ms. WuDunn worked as a business editor and as a foreign correspondent in Tokyo and Beijing. They live near New York City.
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