DYING, SURVIVING, AND AGING WITH GRACE


Not in that order
Resources on illness, death and dying, loss, grief, and positive aging

How storytelling can aid in healing


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.

• Alden, Paulette Bates. Crossing the Moon: A Journey Through Infertility.
• Anderson, Karen. The Spiral Staircase: My Climb Out of Darkness. Anderson's memoir of leaving the life of a Roman Catholic nun in 1969 to join the secular world, "a stunningly poignant account about the nature of spiritual growth" (complicated by years suffering from undiagnosed temporal lobe epilepsy, which she does not dwell on).
• Angelou, Maya. I Know Why The Caged Bird Sings (childhood memories of growing up black when prejudice was intense)
• Ansay, A. Manette. Limbo: A Memoir (an undiagnosed muscle disorder cuts short her career as a concert pianist)
• Ascher, Barbara Lazear. Landscape Without Gravity (about her brother's death from AIDS).
• Barber, Charles. Songs from the Black Chair: A Memoir of Mental Interiors. Haunted by mental illness (his own and that of a friend who kills himself), Barber becomes a psychiatrist, treating the mentally ill at Bellevue. Booklist: "a compelling and compassionate portrait of the struggle for peace and clarity of mind."
• 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 (immobilized by a stroke, the narrator discovers the life of the unfettered imagination). Also a major movie.
• Beauvoir, Simone de. A Very Easy Death (about the death of her mother)
• Berger, Suzanne. The Horizontal Woman: The Story of a Body in Exile. As she bent to pick up her toddler, Berger suffered a freak back injury that left her unable to sit or stand for more than five minutes. For six years she experienced confinement and chronic pain, anguish, isolation, and more.
• Benitez, Sandra. Bag Lady: A Memoir (the story of how Benitez coped with the debilitating disease of ulcerative colitis before and after deciding to have an ileostomy and commit to wearing a plastic bag on her stomach -- of interest also for those with Crohn's disease or colon cancer.
• Berhman, Andy. Electroboy: A Memoir
"Andy Behrman was Superman. He slept three hours a day. He learned new languages in a week. He was a dealer, a hustler and an art forger who made millions. He flew from Geneva to Anguilla then back again to balance out the hot and cold. He gave strangers spontaneous gifts of thousands of dollars from the cash he kept in a refrigerator. Then he was arrested for art forgery, went to prison and soon after that found out he was mad. Following intensive bouts of electric shock therapy, he was cured. No longer Superman, but Electroboy. This is his story." (This book got mixed reviews AS a book, but it does tell the story of bipolar disorder treated successfully with electroshock and the right medication.)
• Bernstein,Jane. Loving Rachel (about life with a blind daughter)
• Black, Kathryn. In the Shadow of Polio: A Personal and Social History (a memoir of Black's childhood experience of a mother in an iron lung, wrapped in the larger story of the search for a cure)
• Bouton, Katherine. Shouting Won't Help: Why I--and 50 Million Other Americans--Can't Hear You (Bouton tells her story about adult onset of profound deafness, and profiles others with similar losses -- an opera singer, a pastry chef, a psychoanalyst, and, as Jerome Groopman writes, "offers a wealth of information and insight about a frustrating and isolating condition."
• Bowman, Grace. Thin
• Bragg, Bernard. Lessons in Laughter: The Autobiography of a Deaf Actor
• Brennan, Karen. Being with Rachel: A Personal Story of Memory and Survival. How she coped with the severe brain injury of her 21-year-old daughter (in a motorcycle accident), and the long road to reconstructing her life and memory.
• Breslin, Jimmy. I Want to Thank My Brain for Remembering Me (on surviving a brain aneurysm).
• Brodkey, Harold. This Wild Darkness: The Story of My Death (the story of his confrontation with AIDS)
• Brookes, Tim. Catching My Breath: An Asthmatic Explores His Illness
• Brownsworth, Victoria A. and Susan Raffo, eds. Restricted Access: Lesbians on Disability . Contributors to this anthology write about the reality of being a "member of a doubly marginalized group in a phobic society," and often homophobic doctors--and write about a range of disabilities (including those from birth defects, AIDS, deafness, chronic fatigue syndrome, mental illness, cerebral palsy).
• Broyard, Anatole. Intoxicated by My Illness (critical illness, in his case from cancer, as a spiritual journey)
• 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.
• Callahan, John. Don't Worry, He Won't Get Far on Foot "Without self-pity or self-righteousness, this liberating book tells us how a quadriplegic with a healthy libido has sex, what it's like to live in the exitless maze of the welfare system, where a cartoonist finds his comedy, and how a man with no reason to believe in anything discovers his own brand of faith."
• Carr, David. The Night of the Gun: A Reporter Investigates the Darkest Story of his Life--His Own . A New York Times reporter spends three years revisiting his harrowing past as a drug addict and and fact-finding for a "reported memoir," because, as he says, "You remember the story you can live with, not the one that happened."
• Casey, Nell, ed. Unholy Ghost: Writers on Depression
• Casey, Nell, ed. An Uncertain Inheritance: Writers on Caring for Family (and some writers on being cared for). A wonderful book, highly recommended for caregivers.
• Chase, Truddi. When Rabbit Howls (introduction by Robert A. Phillips). Truddi Chase (a pseudonym) began therapy when she was building a successful career, marriage, and family--seeking explanations for her extreme anxiety, mood swings, and periodic blackouts. Subjected to violent, ritualized sexual abuse by her stepfather from the age of two, she retreated inside herself and developed symptoms of multiple personality disorder. Told from her viewpoint, this is Trudy's story of her journey with her therapist to discover the world inside herself that she didn't know existed.
• Chorost, Michael Rebuilt: How Becoming Part Computer Made Me More Human. Severely hearing-impaired since birth, Chorost abruptly went totally deaf in 2001. Fascinating account of the human side of cochlear implants.
• Cohen, Richard M. Blindsided: Lifting a Life Above Illness, a Reluctant Memoir (living with multiple sclerosis and later colon cancer, and how his illness affected his wife, Meredith Vieira, and their three children)
• Colas, Emily. Just Checking (some readers wish for more structured insight into obsessive-compulsive complex, but some value Colas's vignettes showing "how 'logical' OCD-caused rituals can seem to those who suffer from it and how you become trapped inside your own head with no reference to reality")
his book is too light and funny, but others this memoir of
• Cousins, Norman. Anatomy of an Illness as Perceived by the Patient (a classic take on how attitude, and especially laughter, affects health outcomes)
• DasGupta, Sayantani and Marsha Hurst, eds. Stories of Illness and Healing: Women Write Their Bodies
• 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)
• De Rossi, Portia. Unbearable Lightness: A Story of Loss and Gain (the story of a Hollywood actress's her long battle to overcome anorexia and bulimia, a "memoir of life in the spotlight and closet, her struggles to conceal her homosexuality and eating disorder, coping with burgeoning fame, and meeting--and marrying--Ellen DeGeneres."
• DeVita, Elizabeth. The Empty Room: Surviving the loss of a brother or sister at any age (partly a memoir of surviving the loss of her brother Teddy to aplastic anemia)
• Dew, Robert Forman. The Family Heart: A Memoir of When Our Son Came Out
• Draper, Nancy A. A Burden of Silence: My Mother's Battle with AIDS
• Dubus, Andre. Meditations from a Movable Chair and the earlier collection of essays Broken Vessels (both written after a 1986 highway accident left him largely confined to a wheelchair, and only some essays deal with his response to the accident and his view of life from a wheelchair)
• Esther, Eliaabeth. Girl at the End of the World: My Escape from Fundamentalism in Search of Faith with a Future
• Estess, Jenifer. Tales from the Bed: A Memoir. (Estess and her sisters founded Project A.L.S. after she contracted the fatal neuromuscular disease.)
• Farrell, Richard. What's Left of Us. A memoir of extreme heroin addiction and redemption: "a rollercoaster ride of ugliness and beauty."
• 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 (about surviving an aneurysm)
• Flyer, Karen. Loss and Found: A Memoir (a memoir of her tumultuous life as a survivor of parental suicide, substance and sexual abuse, a life-threatening eating disorder, and low self-esteem)
• 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 (born with incompletely formed legs, a congenital birth defect, Fries explores what it's like to be different)
• 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 (about the death of her husband after entering the hospital for routine prostate surgery)
• Gordon, Barbara. I’m Dancing as Fast as I Can (on addiction to prescription drugs)
• 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 (an adult with autism explains how it feels to her, and how she works as an expert in her field). Also of interest Animals in Translation: Using the Mysteries of Autism to Decode Animal Behavior
• Grealy, Lucy. Autobiography of a Face (about growing up with Ewing's sarcoma, a cancer that severely disfigured her face)
• Greenberg, Michael. Hurry Down Sunshine (memoir of his daughter's first manic episode, at 15, and how her bipolar disorder affects the family)
• Greene, Valerie. Conquering Stroke: How I Fought My Way Back and How You Can Too
• Gregory, Julie. Sickened: The True Story of a Lost Childhood. Munchausen by proxy (MBP) is an often undetected and dangerous form of child abuse, in which the caregiver (usually the mother) invents or induces symptoms in her child because she craves the attention of medical professionals. Gregory writes about surviving constant physical abuse hoping to please mommy, then learnng of MBP in college, confronting the lie foisted on her all her life, and escaping her mother's madness.
• 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
• Hanagarne, Josh. The World's Strongest Librarian: A Memoir of Tourette's, Faith, Strength, and the Power of Family. See writeups about the book: 'World's Strongest Librarian' strengthens writing voice in new memoir (Ben Fulton, Salt Lake City Tribune, 5-8-13 -- Josh Hanagarne finds refuge from Tourette's in reading, heavy lifting and now writing) and this Boston Globe review (Jesse Singal 5-21-13)
• Handler, Evan. Time on Fire: My Comedy of Terrors (recounting with grim humor his battle with leukemia and his hellish journey through the land of the sick)
• Havemann, Joe. A Life Shaken:My Encounter with Parkinson's Disease
• Higashida, Naoki . The Reason I Jump: The Inner Voice of a Thirteen-Year-Old Boy with Autism. Read online David Mitchell's introduction, A Peek Inside My Son's Head, by the author of Cloud Atlas on why he translated a book by a 13-year-old Japanese boy with autism. "Reading it felt as if, for the first time, our own son was talking to us about what was happening inside his head, through Naoki’s words," writes Mitchell.
• Hill, Susan. Family (about the death of a premature child)
• Hillenbrand, Laura. A Sudden Illness—How My Life Changed (from The New Yorker--The impact of chronic fatigue syndrome, or CFS, on the author of the bestselling book, Seabiscuit)
• Hockenberry, John. Moving Violations: Moving Violations: War Zones, Wheelchairs, and Declarations of Independence
• Hoffman, Richard. Half the House (about child abuse)
• Hofmann, Regan. I Have Something to Tell You: A Memoir (a frank and compelling account of life with HIV from one of its least likely targets--a straight woman, who has fought the stigma associated with the disease)
• Holzemer, Liz. Curveball: When Life Throws You a Brain Tumor (in her case, a baseball-sized meningioma--and remember, a brain tumor is different from brain cancer)
• Hood, Ann. Do Not Go Gentle: The Search for Miracles in a Cynical Time (her search for a miraculous cure for her father's inoperable lung cancer)
• Hornbacher, Marya. Wasted: A Memoir of Anorexia and Bulimia
• 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. A classic memoir about living with manic depression (including its positive aspects).
• Jennings, Michael Burch. They Cage the Animals at Night (the moving account of Burch's painful childhood experiencing abuse in orphanages and foster care, a stuffed animal ("Doggie") his chief source of comfort)
• Jezer, Marty. Stuttering: A Life Bound Up in Words. See Randy Holhut's obit for Jezer and Saying Goodbye to Marty Jezer (Joyce Marcel, Common Dreams)
• Johnson, Fenton. Geography of the Heart (about the death of a gay partner)
• Kamenentz, Rodger. Terra Infirma (a searing recollection of his mother's life and her death from cancer, his mother "yo-yoing between smothering affection and a fierce anger")
• Karr, Mary. The Liar's Club (about growing up with a mentally ill mother in a dysfunctional family)
• Kaysen,Susanna. Girl, Interrupted (a young girl's experiences with mental illness)
• Kettlewell, Caroline. Skin Game (a memoir of self-injury). Also recommended, for understanding self-mutiliation: A Bright Red Scream: Self-Mutilation and the Language of Pain by Marilee Strong.
• Kincaid, Jamaica. My Brother (account of her younger brother's death from AIDS)
• 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)
• Knox, Jen. Musical Chairs (the coming-of-age story of a teenage runaway who flees her working-class home, becomes a stripper and a drinker -- subject to (well-described) anxiety attacks. Her grandmother has schizophrenia. A book about identity, class, family dynamics, isolation and the need for recognition, learning to cope with family--and about the dark world of the stripper (and the creepy men who try to "save" them).
• Kupfer, Fern. Before and After Zachariah (about a brain-damaged child)
• Kusz, Natalie. Road Song (growing up in Alaska, being mauled by a sled-dog, undergoing reconstructive surgery)
• 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) and Eavesdropping: A Memoir of Blindness and Listening (in this sequel to Planet of the Blind, the author learns to live by ear)
• Lachenmeyer, Nathaniel. The Outsider: A Journey into My Father's Struggle with Madness (in which the author tries to reconstruct his father's downward spiral from a promising career as a sociology professor to his death as a schizophrenic vagrant, eluding police)
• 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 (heart disease)
• Lemon, Boyd. Digging Deep: A Writer Uncovers His Marriages (an honest appraisal of why his three marriages failed helps Lemon, a highly paid lawyer, understand himself)
• Lewis, Mindy. Life Inside (diagnosed as schizophrenic at 15, kept in a psychiatric hospital till 18, recovering for decades, believing she was never schizophrenic)
• Lodge, David. Deaf Sentence: A Novel I include this serio-comic novel here because it is so good at conveying the way the world "sounds" to a deaf person, and because it is at least somewhat autobiographical. Read How hiding his deafness ruined novelist David Lodge's life (Moira Petty's story, MailOnline, 5-20-08, about how Lodge concealed his deafness). "On average, it takes a person suffering from sight problems up to three years to do something about it, while those experiencing deafness wait up to 15."
• Lord, Audre. The Cancer Journals (explores her breast cancer and mastectomy)
• Luczak, Raymond. Assembly Required: Notes From a Deaf Gay Life . A personal account of growing up a deaf, gay man, straddling the worlds of the hearing and deaf, coming out as gay after enrolling at Gallaudet University, a university for deaf people in Washington, DC--his worldview shaped by issues of identity, literacy, technology, and family.
• Lukas, Christopher. Blue Genes. A personal account of family experiences with depression and suicide. His mother and his brother committed suicide, and not until later in life did he learn the truth of his mother's death.
• Madoff, Roger. Leukemia for Chickens
• Mairs, Nancy. Waist-High in the World: A Life Among the Nondisabled (wheelchair-bound from advancing multiple sclerosis, she offers "a Baedeker for a country to which no one travels willingly"). Check out also Carnal Acts , and Remembering the Bone House
• 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
• McKee, Steve. My Father’s Heart: A Son’s Journey (a tender memoir about suburban life in York, PA and Buffalo, NY, in the 1960s -- in every sense a “family history,” shedding light on heart disease, especially as inherited in families). Check out Steve McKee’s blog , too.
• 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, Becoming a Man, and Last Watch of the Night (a gay man battles AIDS)
• Mooney, Jonathon. The Short Bus: A Journey Beyond Normal. After growing up with severe learning differences (dyslexia and ADHD), riding the short bus to special-education classes, not learning to read until he was 12, Mooney as an adult buys his own short bus and rides cross-country, looking for kids who are also "not normal." “What makes this journey so inspiring is Mooney’s transcendent humor; the self he has become does not turn away from old pain but can laugh at it, make fun of it, make it into something beautiful.”—Los Angeles Times
• 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 (fleeing an abusive marriage)
• Olson, Rosanne. This Is Who I Am: Our Beauty in All Our Shapes and Sizes (photos of women with all kinds of bodies)
• Park, Clara Claiborne. The Siege:A Family's Journey Into the World of an Autistic Child The First Eight Years of an Autistic Child's Life (by the mother)
• Patchett, Ann. Truth and Beauty: A Friendship (about her strange relationship with Lucy Grealy)
• Pelzer, David J. A Child Called “It”: One Child’s 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 Child’s 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 (spine cancer makes him paraplegic, but liberates his imagination)
• Ratushinskaya, Irina. Grey Is the Color of Hope (remembering four years in a Siberian labor camp)
• Rehm, Diane. Finding My Voice. In the final part of her memoir, the popular National Public Radio host writes about her battle with Spasmodic Dysphonia, a neurological disorder that causes muscle spasms--in her case, affecting her voice, which for a radio host has been a major problem. See also National Spasmodic Dysphonia Association
• Rhett, Kathryn, ed. Survival Stories: Memoirs of Crisis
• Rice, Ed. If They Could Only Hear Me: A collection of personal stories about ALS and the families that have been affected.
• Rice, Rebecca. A Time to Mourn: One Woman's Journey Through Widowhood
• Richmond, Lewis. Healing Lazarus: A Buddhist’s Journey from Near Death to New Life (viral encephalitis sends him into coma, and in recovery he experiences an acute neuropsychiatric complication from a therapeutic drug)
• 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)
• Robison, John Elder. Look Me in the Eye: My Life with Asperger’s (the well-told story of life as a technologically gifted savant with high-functioning autism, with the added twist of an unusual perspective on his brother, who, as Augusten Burroughs, wrote Running with Scissors--apparently the nutty family psychiatrist was no exaggeration). Also by John Elder: Be Different: Adventures of a Free-Range Aspergian with Practical Advice for Aspergians, Misfits, Families & Teachers
• Roth, Philip. Patrimony (about a father's illness and about the father-son relationship)
• Rothenberg, Laura. Breathing for a Living (making the most of life with cystic fibrosis that takes her life at 22)
• Rousso, Harilyn. Don't Call Me Inspirational: A Disabled Feminist Talks Back "Rousso is an activist, artist, educator, social worker, psychotherapist, writer, painter and advocate who has worked in the disability rights field. The book follows her journey from 'passing' - pretending that she didn't have cerebral palsy - to embracing her disability. In the late '70s, she began exploring her disability identity, and she writes with honesty and power." --Jewish Woman, Winter 2012
• 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 therapy—indeed, psychoanalysis—she 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)
• Sebold, Alice. Lucky. Brutally raped during her freshman year at Syracuse, she was told by a cop that she was lucky not to have been murdered and dismembered like an earlier student. This incident, plus her upbringing as the child of alcoholics, led her into depression, post-traumatic stress disorder, and heroin addiction--and finally to recovery.
• 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. Shawn is son of the New Yorker editor (who managed his fears by becoming boss and therefore controlling his environment) and brother of Wallace Shawn, the actor.­
• Shea, Gerald. Music Without Words: Discovering My Deafness Halfway through Life After scarlet fever at age six damaged his cochlea, leaving him partly but severely deaf (unable to decipher consonants and certain vowels). How he compensated and adapted is fascinating, and as one reviewer says, his story is both an inspiration and a cautionary tale.
• 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 (an "indelible portrait of the psychic fallout of childhood illness").
• Shulman, Alix Kates. To Love What Is: A Marriage Transformed (love story of a husband and wife facing his traumatic brain injury and her transformation into caregiver)
• 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 stuck overnight, dramatically changing Skloot’s life, and how he dealt with it)
• Smith, Daniel. Monkey Mind: A Memoir of Anxiety. See NY Times review by Dwight Garner: Total Stranger, Unconditional Love
• 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 (about childhood with a mentally ill mother)
• Styron, William. Darkness Visible: A Memoir of Madness (about his struggle with crippling depression)
• Sutcliff, Rosemary. Blue Remembered Hills: A Recollection (the memoir of one of Britain’s best-loved historical novelists, crippled and badly disabled from the age of three by Still’s Disease, a form of juvenile arthritis)
• Swander, Mary. Out of This World: A Journey of Healing. About a severe allergic reaction, reflecting an environmental disease, and what Swander did to return to health. (Don't expect it to be a book about the Amish.)
• 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 (about death of parents)
• Tracey, Patrick. Stalking Irish Madness: Searching for the Roots of My Family's Schizophrenia. Tracey travels to western Ireland to unravel the family legacy of mental illness: two of his sisters, an uncle, a grandmother and a grandfather have been "taken" in young adulthood by schizophrenia. Writes one reviewer: "What I most appreciated was the research into the genetic and environmental factors that have gone into making this horrible disease such a part of the Irish experience."
• 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)
• Wakefield, Darcy. I Remember Running: The Year I Got Everything I Ever Wanted-and ALS (another moving memoir of living and dying with ALS--and about her "fast-forward" life, "in which she applies for disability, leaves her job, and plans her own funeral as well as meets and moves in with her true love, buys a house, and gives birth to her first child."
• Walker, Lou Ann. A Loss for Words: The Story of Deafness in a Family (what it was like growing up hearing as the oldest child of deaf parents)
• Walls, Jeannette. The Glass Castle (growing up in a decidedly eccentric, often homeless, family)
• Waxman, Robert and Linda. Losing Jonathan (losing a beloved child to drugs)
• Wexler, Alice. Mapping Fate: A Memoir of Family, Risk, and Genetic Research (on Huntington's Disease)
• Wiesel, Elie. Night (powerful account of surviving the nightmare world of the Nazi death camps)
• Wilensky, Amy S. Passing for Normal (a moving 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”)
• Will, Rosalyn. Chrysalis: A Memoir My Life Beyond The Cage Of Scoliosis
• 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: The Extraordinary Autobiography of an Autistic (after 25 years, the daughter of abusive parents begins to emerge from a hallucinatory world—a view of autism totally different from others here)
• Williams, Marjorie. The Woman at the Washington Zoo: Writings on Politics, Family, and Fate (the last third is about her losing battle with cancer)
• Wittman, Juliet . Breast Cancer Journal: A Century of Petals
• Wolff, Geoffrey. The Duke of Deception: Memories of My Father (about his con-man father)
• Wolff, Tobias. This Boy's Life (about escaping from his stepfather's abuse). Geoffrey and Tobias are brothers.
• Wurtzel, Elizabeth. Prozac Nation: Young and Depressed in America (atypical depression and bouts with drugs)
• Young, Joan. Wish by Spirit: A journey of recovery and healing from an autoimmune blood disease


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The Self We Tell Ourselves We Are Influences Our Decisions

"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)
Birren is a pioneer in life story and reminiscence groups.
Read his life story here



Good interview questions for the family


50 Questions for Family History Interviews: What to Ask the Relatives Kimberly Powell, About.com
Great Questions List (StoryCorps)
Guide for Interviewing Family Members (from Virginia Allee, A Family History Questionnaire)
Oral history interview questions and topics (JewishGen)
Questions We Should All Ask Mom (Lisa Belkin, Mother Lode, NY Times Adventures in Parenthood blog)
Script for Video or Audio Interviews with Family Members (RootsWeb, genealogy oriented)
20 Questions to Ask the Important Women in Your Life (Jewish Women's Archive)
Getting to Know You: A How-To Story for Kids on How to Interview Family Members (The Mini-Page, 12-25-10, PDF)
How to Ask Questions for Family History (Greg Lawrence and Kim Leatherdale, Lifetime Memories and Stories)
Interviewing Family: What Should I Ask? Major Life Events (Susan A. Kitchens, Family Oral History Using Digital Tools)
Interviewing Relatives (Ancestor Search)
Interview Questions for Family Interviews and Interview Techniques to Avoid (Ancestry.com)
Questions We Should All Ask Mom (Lisa Belkin, Mother Lode, NY Times Adventures in Parenthood blog)
Re-membering Pets: Documenting the meaning of people’s relationships with these family members by Barbara Baumgartner
Some sure-fire topics for your oral history interview (10 good questions from Delmar Watson)
Suggested Questions (Life Story Center, University of Southern Maine). Excellent questions listed by categories: Birth and Family of Origin, Cultural Settings and Traditions, Social Factors, Education, Love and Work, Historical Events and Periods, Retirement, Inner Life and Spiritual Awareness, Major Life Themes, Vision of the Future, Closure.
Links to top interview questions and guides (Telling Your Story, Pat McNees site)

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Far From the Tree: Parents, Children and the Search for Identity by Andrew Solomon. Solomon "begins by describing his own experience as the gay son of heterosexual parents, then goes on to investigate the worlds of deaf children of hearing parents, dwarves born into “normal” families, and so on. His observations and conclusions are complex and not easily summarized, with one exception: The chapter on children of law-abiding parents who become criminals. Solomon rightly points out that this is a very different situation indeed: “to be or produce a schizophrenic...is generally deemed a misfortune,” he writes. “To...produce a criminal is often deemed a failure.” Still, parents must cope with or not, accept or not, the deeds or behaviors or syndromes of their offspring. How they do or do not do that makes for fascinating and disturbing reading."~Sara Nelson

Pulse: voices from the heart of medicine (personal accounts of illness and healing, fostering the humanistic practice of medicine, encouraging health care advocacy). See Pulse's archive of poems and stories.

The Beneficial Effects of Life Story and Legacy Writing by Pat McNees (Journal of Geriatric Care Management, Spring 2009)

"Love, like light, is a thing that is enacted better than defined: we know it afterward by the traces it leaves on paper."
~ Adam Gopnik

My Words Are Gonna Linger: The Art of Personal History , ed. Paula Stallings Yost and Pat McNees, with a foreword by Rick Bragg ($19.95). Read excerpts here. Read a review here.

"At last, a collection that shows the "why, what, and how" behind memoir as legacy. Spanning more than a century, these intriguing reflections of personal as well as global social and political history are told in the unique voice and viewpoint of each storyteller."
~ Susan Wittig Albert, author, Writing from Life, founder, Story Circle Network

“This anthology sings with Walt Whitman’s spirit of democracy, a celebration of our diversity. Each selection is a song of self; some have perfect pitch, some the waver of authenticity. All demonstrate the power of the word to salvage from the onrush of life, nuggets worth saving.”
~ Tristine Rainer, author of Your Life as Story and Writing the New Autobiography

"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

"Time cannot vanish without trace for it is a subjective, spiritual category. The time we have lived settles in our soul as an experience placed within time. In a certain sense the past is far more real, at any rate more stable, more resilient than the present. The present slips and vanishes like sand between the fingers,acquiring material weight in its recollection."
~ Andrei Tarkovsky, Sculpting in Time