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How storytelling about illness, crisis, disability, differentness, and survival can aid in healingArt, narrative, and healing• Personal narrative and healing (links) • The self we tell ourselves we are influences our decisions • Memoirs of illness, crisis, disability, differentness, and survival (a reading list) Partially sighted readers who want to listen to a title in audio should contact the National Library Service (NLS), which is part of the Library of Congress, or their state Library for the Blind. "I have learned from autobiography that humans are adaptable and it is quite likely that more attention will be given to integration of information from the viewpoints of science, society, and individuals. Autobiography represents a 'soft area' for research, one that would not have been very respected in past years when the behavioral and social sciences were trying to emulate the advances in physics and chemistry. More recently, however, there is growing opinion that our interpretations of our lives influence the decisions we make. The self we tell ourselves we are, the narrative self, appears to influence what decisions we make in life. I had the opportunity to interview a leading psychoanalyst in Los Angeles when he turned 75. I asked him about his psychoanalytic theory and how it related to individuals. He said, 'That is my theory, you have to realize that every person has a theory about his or her own life.' This seems to me a very integrative statement for my approach to autobiography; autobiography reveals the individual's theory about himself or herself, how they explain their life. It leads to the idea that one's self, the self we tell ourselves, is in a sense a personal theory, a theory that provides direction for decisions and actions in everyday life. Here lies a possible connection between the autobiographical stories of life and the decisions that individuals have made and the directions their lives have taken." ~ James E. Birren, How Do I Think I Got Here? (The LLI Review, Fall 2006) Read his life story here Memoirs of illness, crisis, disability, differentness, and survival (a reading list) Alden, Paulette Bates. Crossing the Moon: A Journey Through Infertility Angelou, Maya. I Know Why The Caged Bird Sings Ansay, A. Manette. Limbo: A Memoir Ascher, Barbara Lazear. Landscape Without Gravity Barron, Judy and Sean. There's a Boy in Here (life with autism, from both mother's and son's viewpoint) Bauby, Jean-Dominique. The Diving Bell and the Butterfly: A Memoir of Life in Death Beauvoir, Simone de. A Very Easy Death Bernstein,Jane. Loving Rachel Black, Kathryn. In the Shadow of Polio: A Personal and Social History Bragg, Bernard. Lessons in Laughter: The Autobiography of a Deaf Actor Breslin, Jimmy.I Want to Thank My Brain for Remembering Me Brodkey, Harold. This Wild Darkness: The Story of My Death Brookes, Tim. Catching My Breath: An Asthmatic Explores His Illness Broyard, Anatole. Intoxicated by My Illness Burroughs, Augusten. Running with Scissors: A Memoir (the amusing, bizarre story of the author's life from 13 to 16, when his mentally ill mother has him move in with her eccentric psychiatrist) and A Wolf at the Table: A Memoir of My Father (the more sober account of his childhood attempts to elicit warmth from his cruel and unfeeling, alcoholic father). The broad details of his story are at least partly corroborated in his brother's memoir, Look Me in the Eye: My Life with Asperger's. Casey, Nell, ed. Unholy Ghost: Writers on Depression Casey, Nell, ed. An Uncertain Inheritance: Writers on Caring for Family Clark, Clara Claiborne. The Seige: Cohen, Richard M. Blindsided: Lifting a Life Above Illness, a Reluctant Memoir Cousins, Norman. Anatomy of an Illness as Perceived by the Patient (a classic take on how attitude, and especially laughter, affects health outcomes) DeBaggio, Thomas. Losing My Mind: An Intimate Look at Life with Alzheimer's (the early memories and the daily struggle of a man coming to terms with a progressively debilitating illness) DeVita, Elizabeth. The Empty Room: Surviving the loss of a brother or sister at any age Dew, Robert Forman. The Family Heart: A Memoir of When Our Son Came Out Dubus, Andre. Meditations from a Movable Chair Finger, Anne. Past Due: A Story of Disability, Pregnancy, and Birth Fishman, Steve. A Bomb in the Brain: A Heroic Tale of Science, Surgery, and Survival Frank, Arthur W . At the Will of the Body: Reflections on Illness (explores what illness can teach us about life, drawing on his experience having a heart attack and cancer) Franzen, Jonathon. My Father's Brain (abstract of New Yorker story about his father and Alzheimer's disease, September 10, 2001) Fries, Kenny, Body, Remember Funderburg, Lise. Pig Candy: Taking My Father South, Taking My Father Home (a compelling and beautifully written memoir by a grown daughter a white-looking mixed-race girl raised in an integrated Philadelphia neighborhood who gets to know her dying father in a string of pilgrimages to his boyhood hometown in rural Georgia) Galli, Richard. Rescuing Jeffrey (an account of the gut-wrenching decisions Jeffrey's parents face in the ten days after an accident leaves him paralyzed from the neck down) Gilbert, Sandra. Wrongful Death: A Medical Tragedy Gordon, Barbara. Im Dancing as Fast as I Can Gordon, Mary. Circling My Mother (Gordon's memoir of her Irish Catholic mother, deformed by polio, eventually suffering dementia-and of their complex mother-daughter relationship) Grandin, Temple. Thinking in Pictures Grealy, Lucy. Autobiography of a Face Greenberg, Michael. Hurry Down Sunshine (memoir of his daughter's first manic episode, at 15, and how her bipolar disorder affects the family) Haddon, Mark. The Curious Incident of the Dog in the Night-Time (a work of fiction, not memoir, but it conveys insights from author's work with autistic children) Hammer, Signe. By Her Own Hand: Memoirs of a Suicide's Daughter Handler, Evan. Time on Fire: My Comedy of Terrors Havemann, Joe. A Life Shaken:My Encounter with Parkinson's Disease Hill, Susan. Family Hoffman,Richard. Half the House Holzemer, Liz. Curveball: When Life Throws You a Brain Tumor Hood, Ann. Do Not Go Gentle: The Search for Miracles in a Cynical Time Hull, John. Touching the Rock: An Experience of Blindness (from sight problems at 13, gradually becoming blind) Israeloff, Roberta. In Confidence: Four Years of Therapy Jamison, Kay Redfield. An Unquiet Mind: A Memoir of Moods and Madness Jezer, Marty. Stuttering: A Life Bound Up in Words Johnson, Fenton. Geography of the Heart Kamenentz, Rodger. Terra Infirma Karr, Mary. The Liar's Club (about growing up with a mentally ill mother in a dysfunctional family) Kaysen,Susanna. Girl, Interrupted Kincaid, Jamaica. My Brother Kingsley, Jason, and Mitchell Levitz. Count Us In: Growing Up with Down Syndrome Kleege, Georgina. Sight Unseen (marginally sighted and legally blind at 11 from macular degeneration, Kleege explores the meaning and implications of blindness and sightedness, reminding us that only a fraction of blind people see nothing at all) Kupfer, Fern. Before and After Zachariah Kusz, Natalie. Road Song Kuusisto, Stephen. Eavesdropping: A Memoir of Blindness and Listening (in this sequel to Planet of the Blind, the author learns to live by ear) Kuusisto, Stephen. Planet of the Blind (blind in one eye and nearly blind in the other, at his mother's urging he feigns sightedness until coming to terms with his condition) Lachenmeyer, Nathaniel. The Outsider: A Journey into My Father's Struggle with Madness Lang, Jim. Learning Sickness: A Year with Crohn's Disease Latus, Janine. If I Am Missing or Dead: A Sister's Story of Love, Murder, and Liberation Lear, Martha Weinman. Heart-Sounds: The Story of Love and Loss Lewis, Mindy. Life Inside Lord, Audre. The Cancer Journals Mairs, Nancy. Waist-High in the World: A Life Among the Nondisabled Maurice, Catherine. Let Me Hear Your Voice: A Family's Triumph Over Autism McDonnell, Jane Taylor. News from the Border: A Mother's Memoir of Her Autistic Son McLean, Richard. Recovered, Not Cured: A Journey Through Schizophrenia (a brief, readable memoir by a gay Australian artist whose drawings vividly illustrate the story he tells about his life and mind with schizophrenia) Monette, Paul. Borrowed Time Morrison, Blake. When Did You Last See Your Father?: A Son's Memoir of Love and Loss Neugeboren, Jay. Imagining Robert: My Brother, Madness, and Survival: A Memoir (his brother's 30-year struggle with mental illness) Neugeboren, Jay. Open Heart: A Patient's Story of Life-Saving Medicine and Life-Giving Friendship Nyala, Hannah. Point Last Seen Patchett, Ann. Truth and Beauty: A Friendship Pelzer, David J. A Child Called It: One Childs Courage to Survive (a memoir based on one of the worst recorded cases of child abuse in California history, involving an abusive mother and an alcoholic father), the first in an inspirational trilogy, followed by The Lost Boy: A Foster Childs Search for the Love of a Family and A Man Named Dave: A Story of Triumph and Forgiveness Phillips, Jane. The Magic Daughter: A Memoir of Living with Multiple Personality Disorder Price, Reynolds. A Whole New Life: An Illness and a Healing Ratushinskaya, Irina. Grey Is the Color of Hope Rhett, Kathryn, ed. Survival Stories: Memoirs of Crisis Rice, Rebecca. A Time to Mourn: One Woman's Journey Through Widowhood Richmond, Lewis. Healing Lazarus: A Buddhists Journey from Near Death to New Life Robinson, Jill. Past Forgetting: My Memory Lost and Found ( a compelling account of severe memory loss as the result of a seizure, by a fine novelist who grew up in Hollywood , as daughter of writer and film executive Dore Schary) Robinson, John Elder. Look Me in the Eye: My Life with Asperger's (an interesting book made more so by the fact that he is the brother of Augusten Burroughs, author of Running with Scissors, and tells from a different angle some of the same stories from their bizarre childhood) Roth, Philip. Patrimony Rothenberg, Laura. Breathing for a Living (on making the most of life with cystic fibrosis that takes her life at 22) Saks, Elyn. The Center Cannot Hold: My Journey Through Madness (a fascinating memoir of the internal chaos and external unfairness that have made a life with schizophrenia so difficult for this professor of law and psychiatry, and of the talk therapyindeed, psychoanalysisshe felt was as important as medication in helping her live a high-functioning life as a professor of law and psychiatry) Sarton, May. After the Stroke (the poet's journal about recovering from a mild stroke when she is in her seventies) Scheff, David. Beautiful Boy: A Father's Journey Through His Son's Addiction (chronicling a precocious teenager's spiral downward from abuse of mind- and mood-altering drugs to meth addiction) Scheff, Nic. Tweak: Growing Up on Methamphetamines (the son's story, companion book to Beautiful Boy) Schreber, Daniel Paul. Memoirs of My Nervous Illness (memoirs of madness, as recalled a century ago during confinement In a German mental asylum) Shawn, Allen. Wish I Could Be There: Notes from a Phobic Life part memoir, part explanation, a beautifully written and fascinating account of Shawn's own anxiety and agoraphobia, and a fine summary of what is known about how we form and can learn to manage anxiety and phobias. Shields, David. The Thing About Life Is That One Day You'll Be Dead (personal history melds with riveting biological info about the body at every stage of life an "autobiography of the body") Shreve, Susan Richards. Warm Springs: Traces of a Childhood at FDR's Polio Haven Sidransky, Ruth. In Silence: Growing Up Hearing in a Deaf World Sienkiewicz-Mercer, Ruth and Steven B. Kaplan. I Raise My Eyes to Say Yes. (Encephalitis at 5 weeks left Ruth, a healthy baby, paralyzed and unable to speak normally. Diagnosed an imbecile at 5 years, she was eventually institutionalized and severely mistreated at a school for the mentally and physically disabled until a staff turnover brought her help, including a method for communicating.) Skloot, Floyd. The Night-Side: Chronic Fatigue Syndrome and the Illness Experience (an account of how this mysterious and life-altering illness struck overnight, dramatically changing Skloot's life, and how he dealt with it) Solomon, Andrew. Noonday Demon: An Atlas of Depression Spradley, Thomas S. and James P. Deaf Like Me (parents of a child born deaf as the result of an epidemic of German measles waste years avoiding sign language before learning how to communicate with their child) Steinem, Gloria. "Ruth's Song, Because She Could Not Sing It," in Outrageous Acts and Everyday Rebellions Styron, William. Darkness Visible Sutcliff, Rosemary. Blue Remembered Hills: A Recollection (the memoir of one of Britains best-loved historical novelists, crippled and badly disabled from the age of three by Stills Disease, a form of juvenile arthritis) Tammet, Daniel. Born on a Blue Day (memoir of a life with synaesthesia and savant syndrome, a rare form of Asperger's syndrome) Taylor, Jill Bolte. My Stroke of Insight: A Brain Scientist's Personal Journey (a story that provides hope for the brain-injured, not just those who have had a stroke, as this young brain scientist did) Taylor, Nick. A Necessary End Vincent, Eleanor. Swimming with Maya: A Mother's Story (how the daughter's fall from a horse ended in organ donations transforming a mother's grief) Walker, Lou Ann. A Loss for Words: The Story of Deafness in a Family Walls, Jeannette. The Glass Castle Waxman, Robert and Linda. Losing Jonathan (losing a beloved child to drugs) Wexler, Alice. Mapping Fate: A Memoir of Family, Risk, and Genetic Research Wiesel, Elie. Night Wilensky, Amy S. Passing for Normal (a compelling account of life with a long-delayed diagnosis of Tourette's syndrome and obsessive-compulsive disorder and an "exploration of the larger themes of difference and the need to belong") Willey, Liane Holliday. Pretending to Be Normal: Living with Asperger's Syndrome (a mother's account of her own and her daughter's life with Asperger's syndrome) Williams, Donna. Nobody Nowhere Williams, Marjorie. The Woman at the Washington Zoo: Writings on Politics, Family, and Fate (the last third is about her losing battle with cancer) Wolff, Geoffrey. The Duke of Deception: Memories of My Father Wolff, Tobias. This Boy's Life Wurtzel, Elizabeth. Prozac Nation: Young and Depressed in America |
"Many descriptions of autism and Asperger's describe people like me as 'not wanting contact with others' or 'preferring to play alone.' I can't speak for other kids, but I'd like to be very clear about my own feelings. I did not ever want to be alone. And all those child psychologists who said 'John prefers to play by himself' were dead wrong. I played by myself because I was a failure at playing with others. I was alone as a result of my own limitations, and being alone was one of the bitterest disappointments of my young life. The sting of those early failures followed me long into adulthood, even after I learned about Asperger's." ~ John Elder Robison, in Look Me In the Eye: My Life with Asperger's, p. 211 "...illness is terrible but, with some luck, it can also be full of wonders. The terrors assault us at once; the wonders take longer to become visible. Stories help us gain some distance from the terrors and learn to perceive the wonders, but storytelling is a skill, and like all skills, it takes practice to be most effective. Stories offer witness to all that is badly wrong and needs to be changed, and stories offer imaginations of a more generous life that can be. In telling all kinds of stories, we find healing." ~ Arthur Frank, Stories and Healing the message of fred clifton i rise up from the dead before you a nimbus of dark light to say that the only mercy is memory, to say that the only hell is regret. ~Lucille Clifton "This packrat has learned that what the next generation will value most is not what we owned but the evidence of who we were and the tales of how we loved. In the end, it's the family stories that are worth the storage." ~ Ellen Goodman, Boston Globe "Time is a dressmaker specializing in alterations." ~ Faith Baldwin "You need only claim the events of your life to make yourself yours. When you truly possess all you have been and done, which may take some time, you are fierce with reality." ~ Florida Scott-Maxwell "The real family legacy is the stories, not the sterling." ~ Andrea Gross |