DYING, SURVIVING, OR AGING WITH GRACE


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

Selected Works

Enjoying the golden years
Autism, Asperger's syndrome, Savant Syndrome
Depression, bipolar disorder (manic-depressive illness), schizophrenia, and other forms of mental illness
Including suicide and assisted dying
Plus memorials and requiems
Plus cemeteries, coffins, headstones, memorials, etc.
(stories about specific diseases, conditions, syndromes)
Narrative medicine (or medical narrative) Memoirs of illness, crisis, disability, differentness, and survival
Assisted living, nursing homes, cohousing, or living in place (with or without caregivers)
What's wrong with American health care? Understanding the issues reform must address

Life story writing
(the healing powers of narrative)


How putting events into a story may aid the healing process


Why Write Your Life Story?
"Every time an old person dies, it's like a library burning down."~ Alex Haley

Adventure in Chinatown by Susie Silook
Alzheimer's: Mementos help preserve memories (Mayo Clinic staff)
Alzheimer's Patients Turn To Stories Instead Of Memories (Joanne Silberner, Shots, NPR's Health Blog, 5-14-12). For people with dementia, storytelling can be therapeutic. The idea of a program called TimeSlips is to show photos to people with memory loss, and get them to imagine what's going on — not to try to remember anything, but to make up a story. ("TimeSlips opens storytelling to everyone by replacing the pressure to remember with the freedom to imagine.")
Art for Recovery (UCSF)
Auntie's Awakening (Tamara Jones story in Washington Post about how the pretzel queen's personal awakening led her to start Seven Women, Seven Weeks, Seven Stories)
Autobiographical Writing: An Innovative Therapeutic Recreation Intervention (Nancy Richeson, Therapeutic Recreation, 3-12-02)
Bandaides and Blackboards (stories by kids and teens about growing up with medical problems--so you know how they coped)
The Beneficial Effects of Life Story and Legacy Activities by Pat McNees (Journal of Geriatric Care Management, Spring 2009). Get PDF file of journal article here.
Compelling Stories, if Not Literature (Abigail Zuger, MD, NYTimes, on the nature, benefits, uses, limits, and appeal of personal health-or illness-related memoirs, including tales of survival)
Creating a story of the self (an excerpt from Storycatcher, by Christina Baldwin)
Culturally Appropriate Storytelling to Improve Blood Pressure: A Randomized Trial (Annals of Internal Medicine 2011;154:77-84)
Dignity Therapy. For the Dying, A Chance to Rewrite Life (Alix Spiegel, Morning Edition, NPR 9-12-11). Listen or read transcript.
Dignity therapy: a novel psychotherapeutic intervention for patients near the end of life (abstract of story in Journal of Clinical Oncology)
A Facebook story: A mother's joy and a family's sorrow<. Ian Shapira, Washington Post, has edited and annotated Shana Greatman Swers Facebook page to tell her story from pre-baby date nights to a medical odyssey that turned the ecstasy of childbirth into a struggle for life.
• Friedell, Morris, writing My Alzheimer's Struggle, written in the early stages of Alzheimer's. Friedell is prominently featured in The Forgetting, David Shenk's fine book about Alzheimer's.
From Generation to Generation(Dara Kahn's story about Pat McNees's life story writing classes), Bnai Brith Magazine Fall 2010
Future Elder Caregivers Should Learn Life Histories. The social work and history departments at the University of South Florida designed a project to introduce the concept of "person-centered care": Working with a class of 22 undergraduates, 23 participants from a residential facility for seniors shared their life stories in various ways (talking, creating a scrapbook, being videotaped for an oral history, etc.).
Gratitude, the "forgotten factor" in happiness research. Highlights from the Research Project on Gratitude and Thankfulness (Robert A. Emmons and Michael E. McCullough, Fall 2003). PDF file
The Honor Page (Tom Golden's website, where those bereaved can honor Children's Deaths, Parents' Deaths, Loved Ones' Deaths, or post a link to a memorial)
How to Write a Memoir: Be yourself, speak freely, and think small, writes William Zinsser (American Scholar, Spring 2006)
The Implications of plot lines in narrative and memoir. Victoria Costello's essay on storytelling approaches to illness narratives (Nieman StoryBoard 7-11-11). Costello (the author of A Lethal Inheritance: A Mother Uncovers the Science Behind Three Generations of Mental Illness ) writes about illness narrative as an interactive experience, and about three common plotlines: the restitution narrative, the chaos narrative, and the quest narrative.
Life Review (Linda M. Woolf)
Memoirs and Memory (Frank Bruni, Huffington Post, 9-16-09)
Mrs. Brown's Beauty (see the artwork, read the bio)
My Motherless Mother (Candy Schulman, Opinionator, NY Times, 1-13-16)
Ongoing Psychological Growth with Aging: Autobiography and The Summing Up Phase by Gene D. Cohen. International Reminiscence and Life Review Conference 2007: Selected Conference Papers and Proceedings (November 15-16, 2007, San Francisco, CA), pp 33-39. Available free online or download here.
Our stories, ourselves (Sadie F. Dingfelder, Monitor on Psychology, American Psychological Association Jan 2011). The tales we tell hold powerful sway over our memories, behaviors and even identities, according to research from the burgeoning field of narrative psychology.
Secrets to a Successful Interview (Valerie Holladay, Ancestry Magazine)
Questions we should all ask Mom (Lisa Belkin, New York Times 5-6-09)
Stories and healing by Arthur Frank
Robert Butler's Legacy Lives On (Andrew Achenbaum, Aging Today)
Stories in Medicine: Doctors-in-Training Record a Different Type of Patient History (Margot Adler, NPR, 10-28-03)
Stories of healing and transformation (The Healing Bridge)
StoryCorps
Storytelling For Health: Doctor Promotes Intimate Patient Narratives (Dr. Annie Brewster, WBUR's CommonHealth: Reform and Reality, 3-11-14). How the Health Story Collaborative, a nonprofit that facilitates Healing Story Sessions .
The Tangled Neuron: A Layperson Reports on Memory Loss, Alzheimer's, and Dementia (excellent links to helpful material and sites)
Telling the Illness Story (Sharon Kilty
Telling your own (or someone else's) life story
Using stories for growing and healing by Christiane Brems
Veterans History Project
The View From the Victim Room (Courtney Queeney, NY Times, 6-27-13). This isn't about healing through writing, but it's well worth a read.
Welcome to Pine Point, an interactive documentary. Click on Welcome to Pine Point. Scroll toward bottom, click on Visit Website. (Or start here at Broadhead and click on Welcome to Pine Point.) Savor.
"It was the last truly iconic era.
"The last time we more or less went through the motions of change together, everyone excited by the same things, at the same time.
"I always found this comforting. We were all in the same boat - or at least swimming nearby. Now, we're all in our own little boats, in our own little oceans. It seems so much harder to be collectively surprised, exhilarated."
What We Can Learn from a Biography of Helen Keller's Teacher (Kim E. Nielsen, HNN, on Anne Sullivan Macy)
What Your 'Life Story' Really Says About You (Carolyn Gregoire, Huffpost, 11-18-13)
When a life story can be part of cancer treatment (Southern Reporter, 4-26-12). Watch the moving video: Helen Morton's digital story about her husband Forbes's life and final weeks, dying at home, surrounded by his family.
When Patients Share Their Stories, Health May Improve (Pauline W. Chen, MD, NY Times 2-10-11). Join a conversation about the article at Healing Through Storytelling Tara Parker-Pope, Well column, NY Times, 2-10-11). One contributor recommended Gratitude, a GlassHospital blog story about the book 365 Thank Yous: The Year a Simple Act of Daily Gratitude Changed My Life by John Kralik.
The Why of Memoir Writing (Martha Jewett's Blog, Write Your Memoir)
Why writers tweet about death, illness, rape (Mallary Jean Tenore, Poynter, 12-27-11)
Why write personal narratives? A doctor's experience, by Julie Connelly, MD (LitSite Alaska)
Why write personal narratives? A doctor's experience, by Julie Connelly, MD (LitSite Alaska)
Why Write: What Experts Say (Jean Norman, Life Stories, Nevada)
World War I diary as memorial (U.S. Marine Henry K. Kindig)
The Wounded Storyteller: Body, Illness, and Ethics by Arthur W. Frank
[Back to Top]


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)
Great interview questions and guides (Pat McNees, Telling Your Story) What to ask in a life-story or oral history interview
The art and craft of interviewing

I "ask myself this question every morning: ‘what would I be doing today if I only had 37 days to live?’ It’s a hard question some days. But here’s how I answered it:
'Write like hell, leave as much of myself behind for my two daughters as I could, let them know me and see me as a real person, not just a mother, leave with them for safe-keeping my thoughts and memories, fears and dreams, the histories of what I am and who my people are. Leave behind my thoughts about living the life, that “one wild and precious life” that poet Mary Oliver speaks of. That’s what I’d do with my 37 days. So, I’m beginning here."~Why 37 Days?, excerpt from Patti Nigh's blog
[Back to Top]

Healing stories and storytelling organizations and sites


Arts and Healing Network
Center for Digital Storytelling, a California-based community arts organization rooted in the craft of personal storytelling, with an emphasis on first-person narrative, meaningful workshop processes, and participatory production methods. Newsletter focuses on five core area: Stories of Health, Silence Speaks (stories to fight gender-based violence), Witness Tree (stories of place and environmental change),Immigrant Voices, and Women, Girls, and Leadership.
Doug Lipman's many good articles on storytelling (and you can subscribe to his newsletter)
Healing Heart (Allison Cox stories)
Healing Story Alliance, whose site has sections on Children in Crisis-Related Sites, Stories for Children in Crisis, Stories We Live, and more.
International Expressive Arts Therapy Association (IEATA)
The Mothers Living Stories Project, site of Linda Blachman, author of Another Morning: Voices of Truth and Hope from Mothers with Cancer
Narrative and Healing (LitSite, Alaska, rich material on the therapeutic properties of writing and storytelling, with examples of how people of all ages face life's challenges through the art of telling their stories)
The Narrative Playbook: The Strategic Use of Story to Improve Care, Healing, and Health (Business Innovation Factory, funded by Robert Wood Johnson Foundation) Tools and ways to make storytelling — in all its forms — an integral part of the way we “do” healthcare.
National Storytelling Network (connecting people to and through storytelling and advancing the art of storytelling – as a performing art, a process of cultural transformation)
National Storytelling Festival. And somewhere there must be a site that lists all the other storytelling festivals, such as Beyond the Border (Wales International Storytelling Festival)
Stanford Storytelling Project
Story Arts Online (Heather Forest’s site on storytelling in the classroom)
Storytelling group--Perspectives: A story about love and sweaters (Dan Yashinsky, Canadian Jewish News, 6-3-15) "In our storytelling gathering we’ve made a place where, through stories, we recognize and remember each others’ lives – including, like with the fine sweaters Susan so carefully chooses for her man, the small gestures of love, devotion, and sheer stubborn determination to find meaning in the middle of sorrow and loss."
Story Lovers World (many resources, geared to education)
Time Slips (creative storytelling for people with dementia). In an age when medicine offers few treatments for dementia, TimeSlips provides hope by opening avenues for meaningful communication and connection
Wisdom Tales: Bully prevention through storytelling (Eliza Pearmain's storytelling performances with a purpose)
[Back to Top]

I "ask myself this question every morning: ‘what would I be doing today if I only had 37 days to live?’ It’s a hard question some days. But here’s how I answered it:
'Write like hell, leave as much of myself behind for my two daughters as I could, let them know me and see me as a real person, not just a mother, leave with them for safe-keeping my thoughts and memories, fears and dreams, the histories of what I am and who my people are. Leave behind my thoughts about living the life, that “one wild and precious life” that poet Mary Oliver speaks of. That’s what I’d do with my 37 days. So, I’m beginning here."~Why 37 Days?, excerpt from Patti Nigh's blog
[Back to Top]



Writing and Healing: “The Best Therapy I’ve Had” (Sharon Lippincott's article about how a memoir writing class helped recovery from a brain injury, Women's Memoirs 6-26-11)

The Beneficial Effects of Life Story and Legacy Activities by Pat McNees (Journal of Geriatric Care Management, Spring 2009). Get PDF file of journal article here (61.9KB)

Some books that may be helpful:
• Aftel, Mandy. The Story of Your Life: Becoming the Author of Your Experience. Geared more to self-understanding than to memoir writing, this book is still useful for life writing. Focusing on what Aftel calls the three major life plots (love, mastery, and loss), she provokes reflection on things like How Money Complicates the Love Plot, How Children Complicate the Marriage Subplot, and How Escape Complicates the Mastery Plot.

• Charon, Rita. Narrative Medicine. The idea behind the field of narrative medicine, which Charon helped create, is that the doctor's job is to listen and by hearing the patient's story to know the patient more fully than numbers on a chart can convey. You'll find more resources on narrative medicine here, including books by Arthur Kleinman, Lewis Mehl-Madrona, and Arthur Frank.

• DeSalvo, Louise. Writing as a Way of Healing: How Telling Our Stories Transforms Our Lives. Cautioning that writing is no substitute for medical care, DeSalvo (who wrote about her own pain, anxiety, and depression in Vertigo: A Memoir) recommends writing five pages a week, uncensored, in spare moments, reporting every detail, to speed healing -- and sharing with other empathetic writers, to sharpen narrative. She refers often to James W. Pennebaker's Opening Up: The Healing Power of Expressing Emotions, based on his 10 years of clinical research. "Dr. Pennebaker has demonstrated that expressing emotions appears to protect the body against damaging internal stresses and seems to have long-term health benefit," wrote Daniel Goleman, in the NY Times.

• McDonnell, Jane Taylor. Living to Tell the Tale: A Guide to Writing Memoir. In this little book, McDonnell focuses on how to write "crisis memoirs," finding "our own meaningfulness, even in the midst of sadness and disappointment." In addition to teaching a related college course ("Witness Narratives: Memoirs of Survival"), she has written about life with her autistic son and about her own problems with alcoholism.

• Myers, Linda Joy. The Power of Memoir: How to Write Your Healing Story Step-by-step memoir writing, with healing from emotional pain as a goal; full of interesting psychological insights.

• Raab, Diana M. Healing With Words: A writer's cancer journey. Foreword by Melvin J. Silverstein, MD.

• Silverman, Sue Williams. Fearless Confessions: A Writer’s Guide to Memoir. In addition to covering traditional writing topics well, Silverman encourages writers to transform their life story into words that matter. She advocates finding the courage to speak truth about issues on which others might prefer silence. Her own confessional memoirs are about incest (Because I Remember Terror, Father, I Remember You) and sexual addiction (Love Sick).

• Stone, Richard. The Healing Art of Storytelling. This classic and insight-provoking guide to finding coherent narratives in our life experiences was out of print and is now available again. Not about memoir but about understanding the storylines of our lives.


[Go Top]

[Back to Top]


On dealing with variance from "normality"



Far From the Tree: Parents, Children and the Search for Identity by Andrew Solomon. In this fascinating, empathetic, and enlightening book, Solomon writes about parents coping with their children's deafness, dwarfism, Down syndrome, autism, schizophrenia, or multiple severe disabilities; with children who are prodigies, who are conceived in rape, who become criminals, who are transgender. From Julie Myerson's NY Times review: "Solomon spent 10 years interviewing more than 300 families with “exceptional” children. That is, children with “horizontal identities,” a term he uses to encompass all the “recessive genes, random mutations, prenatal influences or values and preferences that a child does not share with his progenitors.” He concludes that “the unhappy families who reject their variant children have much in common, while the happy ones who strive to accept them are happy in a multitude of ways....This is a passionate and affecting work that will shake up your preconceptions and leave you in a better place." I could not agree more. This huge book should be required reading for everyone in education and healthcare, certainly for all doctors, and anyone with any influence on parenting and childhood development. From another interesting review, in the Guardian, by Emma Brockes: "Fixing is the illness model," writes Solomon. "Acceptance is the identity model."

Stigma: Notes on the Management of Spoiled Identity by Erving Goffman). Drawing on autobiographies and case studies, sociologist Erving Goffman analyzes the stigmatized person’s feelings about himself and his relationship to “normals."
Asylums: Essays on the Social Situation of Mental Patients and Other Inmates by Erving Goffman, who analyzes life in "total institutions"--closed worlds like prisons, army camps, boarding schools, nursing homes and mental hospitals. He focuses on the relationship between the inmate and the institution, how the setting affects the person, and how the person can deal with life on the inside.
[Back to Top]

Memoirs of illness, crisis, disability,
differentness, and survival (a reading list)

"Frank identifies three basic narratives of illness....Restitution narratives anticipate getting well again and give prominence to the technology of cure. In chaos narratives, illness seems to stretch on forever, with no respite or redeeming insights. Quest narratives are about finding that insight as illness is transformed into a means for the ill person to become someone new."~from Amazon review of The Wounded Storyteller: Body, Illness, and Ethics by Arthur W. Frank.

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.
• Adams, Rachel. Raising Henry: A Memoir of Motherhood, Disability, and Discovery ""We learn from Adams what it means to have a son very different from most others in mind and body, whose future is uncertain, but whose life is infused with love and so worth living."—Jerome Groopman
• 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)
• Anner, Zach. If at Birth You Don't Succeed: My Adventures with Disaster and Destiny A "frank and devilishly funny" book about an award-winning comedian who "recounts his journey from being what he calls a “crappy baby” [with cerebral palsy. "the sexiest of the palsies," to] the host of his own travel show and an improbable workout guru. If there was ever a book that showed the importance of laughing at yourself, this is probably it.”~Mental Floss
• 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).
• 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)
• 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)
• Bragg, Bernard. Lessons in Laughter: The Autobiography of a Deaf Actor
• 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)
[Back to Top]

• Brookes, Tim. Catching My Breath: An Asthmatic Explores His Illness
• 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.
• Cahalan, Susannah. Brain on Fire: My Month of Madness. A medical mystery involving a pathogen that jump-started brain inflammation, paranoia, and seizures. "A fascinating look at the disease that . . . could have cost this vibrant, vital young woman her life” (People). An exploration of memory and identity, faith and love.
• 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.
• 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)
• Crosby, Christina. A Body, Undone: Living On After Great Pain. "n her surgically incisive descriptions of how it feels to live in her ravaged body and to redefine herself within extreme new limits, Crosby resists both self-pity and the too-easy narrative of hardship overcome. Instead, she asks readers to recognize how messy, precarious, and queer, in every sense of the word, life in a body can be."~ Michael M. Weinstein, A Professor’s Memoir of Life Inside a Ravaged Body (New Yorker, 4-11-16)
• 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)
• 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
• DiDonato, Tiffanie.. Dwarf: A Memoir. Tiffanie DiDonato was born with limbs were so short that she was not able to reach her own ears. A memoir of grit and transformation for anyone who has been told something was impossible and then went on to do it anyway.
• 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)
• Estess, Jenifer. Tales from the Bed: A Memoir. (Estess and her sisters founded Project A.L.S. after she contracted the fatal neuromuscular disease.)
• Fechter, Stir: My Broken Brain and the Meals That Brought Me Home. "“Pairing food with the nightmare of surviving a brain aneurysm shouldn't work — but under Jessica Fechtor's wise and wonderful narration, the pairing not only works, it shines.” ~Susannah Cahalan, author of Brain on Fire. See review (Huff Post).
• 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).
• Fishman, Steve (though not a memoir). A magazine story and not a memoir. How One Man’s Face Became Another Man’s Face (New York Magazine, 11-15-15) The story of a human transplant, on a man whose face had been shot off. It was the first surgery to replace, in addition to the face, the jaws, teeth, and tongue. With pre-surgery photo and post-surgery video of Patrick Hardison.
• 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)
[Back to Top]

• 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
• 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 (recounting with grim humor his battle with leukemia and his hellish journey through the land of the sick)
• Haskell, Molly.My Brother My Sister: Story of a Transformation. On a visit to New York, the brother of well-known film critic Molly Haskell dropped a bombshell: Nearing age sixty, and married, he had decided to become a woman.
• Havemann, Joe. A Life Shaken:My Encounter with Parkinson's Disease
• 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)
• Hoge, Robert. Ugly. Read NPR interview with Mr. Hoge (9-14-16)
• 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)
• 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).
• 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)
• Kennedy, Dan. Little People: Learning to See the World Through My Daughter's Eyes A week after her birth in 1992, Dan Kennedy's firstborn daughter was diagnosed with achondroplasia, the most common type of dwarfism. Reassured by doctors that Becky would have normal intelligence and a normal life span, Dan and his wife, Barbara, quickly adjusted to the reality of her condition. What wasn't so easy was grasping people's attitudes toward those with physical differences.
• 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
[Back to Top]

• 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 (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)
• Lewis, Mindy. Life Inside (diagnosed as schizophrenic at 15, kept in a psychiatric hospital till 18, recovering for decades, believing she was never schizophrenic)
• Lord, Audre. The Cancer Journals (explores her breast cancer and mastectomy)
• 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, David Stuart The Answer to the Riddle Is Me: A Memoir of Amnesia (On October 17, 2002, David MacLean “woke up” on a train platform in India with no idea who he was or why he was there. No money. No passport. No identity. The story of McLean's terrifying bout with an episode of amnesia, set off by his allergic reaction to a drug many of us place our faith in.)
• 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)
• Meissner, Tara. Stress Fracture: A Memoir of Psychosis (what its like to experience bipolar disorder)
• Monette, Paul. Borrowed Time, Becoming a Man, and Last Watch of the Night (a gay man battles AIDS)
• Morris, Jan. Conundrum (the story of James Morris’s hidden life and how he decided to bring it into the open, as he resolved first on a hormone treatment and, second, on risky experimental surgery that would turn him into the woman he truly was--one of the first books to discuss transexuality with honesty and without prurience)
• 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)
[Back to Top]

• 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)
• Pruchno, Rachel. Surrounded by Madness: A Memoir of Mental Illness and Family Secrets
• Ratushinskaya, Irina. Grey Is the Color of Hope (remembering four years in a Siberian labor camp)
• Rhett, Kathryn, ed. Survival Stories: Memoirs of Crisis, a wonderful collection of short memoirs, and extracts from memoirs, with stories by Lucy Grealy, William Styron, Natalie Kusz, Lauren Slater, Christopher Davis, Nancy Mairs, Floyd Skloot, and many more. First rate.
• 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)
• Russo, Richard. Elsewhere A powerful memoir of Russo's enmeshed life with his difficult mother, and his discovery at the end of his mother's difficult life that she had lived with undiagnosed and untreated obsessive compulsive disorder.
• 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)
• Serotte, Brenda. The Fortune Teller's Kiss (memoir of contracting polio just before she turned eight, in 1954 -- a funny and heartbreaking account of growing up a Sephardic Jew--a Spanish Jewish family from Turkey-- among Ashkenazi neighbors in the Bronx)
[Back to Top]

• 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.­
• Sheed, Wilfrid. In Love with Daylight: A Memoir of Recovery (about his experiences with childhood polio, depression, and an addictive personality from which he learned about the flaws in the medical system and the virtue of self-motivated recovery)
• 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)
• Solomon, Andrew. Noonday Demon: An Atlas of Depression
• Spencer-Wendel, Susan. Until I Say Good-Bye: My Year of Living with Joy. A celebrated journalist makes the most of her final days after discovering she has amyotrophic lateral sclerosis (ALS, better-known as Lou Gehrig's disease).
• 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)
• 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)
• 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)
• Witchell, Alex. All Gone: A Memoir of My Mother's Dementia. With Refreshments . At just past 70, her mother started showing unmistakable signs of dementia; Witchell responded by cooking family recipes to "come to terms with her predicament, the growing phenomenon of 'ambiguous loss'— loss of a beloved one who lives on."
• 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”)
• 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
[Back to Top]

Narrative Medicine

and Medical Narrative

Medical practitioners: Consider attending a Narrative Medicine workshop. The idea: narrative training with stories of illness "enables practitioners to comprehend patients’ experiences and to understand what they themselves undergo as clinicians." Check out this pageful of links to podcasts of Narrative Medicine Rounds, lectures or readings presented by scholars, clinicians, or writers engaged in work at the interface between narrative and health care. Rounds are held on the first Wednesday of each month from 5 to 6:30 pm in the Columbia University Medical Center Faculty Club, followed by a reception. Rounds are free and open to the public. Elisabeth Pozzi-Thanner of Oral History Productions took and recommended an excellent intensive four-day workshop on Narrative Medicine at Columbia University, which I took and found interesting, though it was probably less helpful to me than it was to medical practitioners.
A new sister site: Center for Narrative Practice (in Boston)

Here are some useful links:
Narrative Medicine blog (an extension of the work, discourse, teaching and learning that takes place in the Narrative Medicine Program at Columbia University -- "Practicing clinical care with the ability to recognize, absorb, interpret, and be moved by the stories of illness")
Why Oliver Sacks will be missed For the British neurologist, illness was always embedded in his stories, amidst the complexity of human lives, and the patient was always a person, not a case study. "As [Sacks] wrote: "(Case histories) convey nothing of the person… To restore the human subject at the centre - the suffering, afflicted, fighting, human subject - we must deepen a case history to a narrative or tale." With that prism, no one has done more than Sacks to contribute to the nascent field of narrative medicine, in which a doctors' ability to relate to a patient's story outranks his technical know-how." See also Doctors Who Tell Stories: Oliver Sacks and Narrative Medicine (Ray Barfield, Literary Hub, 12-16-15) "I don’t think [Dr. Sacks] thought much in terms of medical school curricula and requirements—he was not an institutional man. He disliked schooling in general, being largely an autodidact, though he loved seeing patients from the start. He was very happy to see the revival of case histories and medical narrative that has taken place over the last twenty years or so—he greatly admired the work of Atul Gawande, Jerome Groopman, Sherwin Nuland, Danielle Ofri and others who seek to bring narrative into medicine."
The difficulty of practicing narrative medicine ( Lewis Mehl-Madrona, FutureHealth, 9-7-15)
The Story Doc: How Storytelling is Changing The Way Doctors Treat Illness (Abigail Rasminsky, Oprah Magazine, July 2012). A simple, ancient philosophy that could transform the practice of medicine. This is particularly helpful: "Sayantani Dasgupta, MD, who teaches narrative medicine at Columbia University, says the key to sharing your health history is thinking of it as a story: Choose the turning points that you want to highlight—the ups and downs you've experienced over time. Who are the main characters? A supportive partner? An unsupportive boss? Mention the dramatic tensions. You might be concerned about meeting work deadlines, or caring for a sick parent. These details will help your doctor treat your illness in the context of your life. Finally, spill your fears. Maybe your mother died of a brain tumor and you're afraid you will, too. Your worries offer insight into your hesitancies and motivations."
‘Literature about medicine may be all that can save us’ (Andrew Solomon, The Guardian, 4-22-16) A new generation of doctor writers is investigating the mysteries of the medical profession, exploring the vital intersection between science and art. One "generation of older doctors, including Oliver Sacks, Lewis Thomas and Sherwin Nuland... Sacks wrote: “In examining disease, we gain wisdom about anatomy and physiology and biology. In examining the person with disease, we gain wisdom about life."
”In the last decade or two, a new generation of doctor writers – including Atul Gawande, Abraham Verghese, Henry Marsh, Danielle Ofri, Siddhartha Mukherjee, Paul Kalanithi and Gavin Francis – have undertaken the mission of seeing in this fashion. For them, the ability to string together twin narratives, that of the doctor and that of the patient, is the only path to truth. The first ingredient in their formula is humility....We mustn’t go back to the kind of medicine in which the benign smile of the doctor provides comfort because the cures are somewhere between hypothesis and quackery." The books reviewed:
---Complications: A Surgeon's Notes on an Imperfect Science by Atul Gawande
---Do No Harm: Stories of Life, Death, and Brain Surgery by Henry Marsh
---When Breath Becomes Air by Paul Kalanithi
---What Doctors Feel: How Emotions Affect the Practice of Medicineby Danielle Ofri

---The Emperor of All Maladies: A Biography of Cancer by Siddhartha Mukherjee
---Adventures in Human Being: A Grand Tour from the Cranium to the Calcaneum by Gavin Francis
---NeuroTribes: The Legacy of Autism and the Future of Neurodiversity by Steve Silberman. "Medicine’s inexactitude is a problem not only of primitive science, but also of a sometimes crude view of human beings. Literature about medicine may be all that can save us."
---Missing Out: In Praise of the Unlived Life by Adam Phillips

Perspectives On Patients: Narrative Medicine (Laura Lee & Frank Stasio, WUNC, North Carolina Public Radio, 4-12-16) "For many health professionals, treating patients is a matter of assessing their ailments, making a diagnosis and prescribing treatment where it is required. Then it is on to the next patient. But a new program in VA medical centers aims to make connections between medical professionals and their patients through narratives. The Charles George VA hospital in Asheville, NC, is one of the locations of the program called “My Life, My Story.” World War II veterans tell their stories to a staff writer who condenses their narratives. The resulting document becomes part of the medical chart and can be accessed by doctors, nurses and other healthcare workers."
Remembering Oliver Sacks, A Pioneer Of Narrative Medicine (Rita Charon, Health Affairs blog, 9-30-15) What must it have been like to be one of the patients he wrote about? "He entered the narrative world of his subject with his curiosity opened wide. Probably more important, he entered with the conviction that he could make sense of what he perceived. He was convinced that if he took enough time and discernment, he would be able to see the meaning of what to others seemed bizarre or crazy. This is what he taught me: to find the right words. To believe that I could find meaning in anything if I looked hard enough and tried hard enough to represent it in words. I have come to believe that narrative saves lives. Maybe I learned this from Oliver Sacks."
I am not a story (Galen Strawson, Aeon, 9-3-15) The dangerous idea that life is a story. Some find it comforting to think of life as a story. Others find that absurd. So are you a Narrative or a non-Narrative?
Literature, Arts, and Medicine database (NYU hosts)
Pulse—voices from the heart of medicine (excellent Web-only journal)
Intima: A Journal of Narrative Medicine (listen or read to online stories and pieces such as this one: Tell me a story: Using narrative history with older patients by Chris Frank)
Pulse: Voices From the Heart of Medicine - The First Year, anthology edited by Paul Gross and Diane Guernsey
Stories in Medicine: Doctors-in-Training Record a Different Type of Patient History (Margot Adler, NPR, 10-28-03)
Annals of Family Medicine (features "Reflections" -- a reflective essay)
Family Medicine (official journal of the Society of Teachers of Family Medicine; check out its feature “Lessons From Our Learners." Often publishes personal essays, 55-word stories and poems.
Poetry and Prose Rounds (Washington University, which provided the following links)
Fifty-five Word Stories: “Small Jewels” for Personal Reflection and Teaching by Colleen T. Fogarty (Family Medicine, June 2010), PDF
Narrative Medicine Heals Bodies and Souls (Lorrie Klosterman's interview with Lewis Mehl-Madrona, Utne Reader, Sept-Oct 2009)
Teaching Psychiatric Patients Writing, and Hope (Samuel G. Freedman, NY Times 8-26-11). The Rev. Bonnie McDougall Olson leads a writing workshop at Creedmoor Psychiatric Hospital.
What to do with stories: The sciences of narrative medicine (Rita Charon, Canadian Family Physician Vol. 53, No. 8, August 2007, pp.1265 - 1267)
Illness as More Than Metaphor (by David Rieff, Susan Sontag's son, NY Times Magazine, 12-4-05)
How to Do a Close Reading (Patricia Kain, Harvard University Writing Center)
Close Reading of a Narrative Passage (K. Wheeler, Carson-Newman College)
Wounded Storytellers: Narratives of Illness in Literature (Johanna Shapiro's syllabus for a course at the University of California at Irvine's Dept of Family Medicine; an excellent reading list)
Explorations: An E-Journal of Narrative Practice. See for example: Re-membering Pets: Documenting the meaning of people’s relationships with these family members by narrative therapist Barbara Baumgartner

And here are some books on the subject (there are many more!):
The Illness Narratives: Suffering, Healing, and the Human Condition by Arthur Kleinman
Narrative Medicine: Honoring the Stories of Illness by Rita Charon
Narrative Medicine: The Use of History and Story in the Healing Process by Lewis Mehl-Medrona author of Coyote Wisdom: Healing Power in Native American Stories
Narrative Medicine: Learning to Listen (Gina Kolata, NY Times, 12-29-09, about Rita Charon's program at Columbia)
Psychoanalysis and Narrative Medicine, ed. Peter L. Rudnytsky and Rita Charon
Theft of the Spirit: A Journey to Spiritual Healing by Carl Hammerschlag
The Wounded Storyteller: Body, Illness, and Ethics by Arthur Frank ("for academic medical collections"). Frank writes about restitution narratives (in which the narrator, expecting to get well again, is focused on the technology of cure), chaos narratives (in which the narrator sees illness lasting forever, with no respite), and quest narratives (in which illness is transformative, as the storyteller gains insights and becomes someone new). Frank is also the author of At the Will of the Body: Reflections on Illness
[Back to Top]

Organizations that help artists with disabilities


Or (resources described by the National Endowment for the Arts--check that link for more information about the organizations listed below)
Access to the Arts (Louisville, KY)
Accessible Arts (VSA, Kansas's state organization on arts and disabilities)
Alliance for Inclusion in the Arts (formerly Non-Traditional Casting Project)
American Federation of Musicians (provides grants to musicians with disabilities)
Axis Dance Company (strives to integrate contemporary dance and disability culture)
Coalition for Disabled Musicians, Inc.(CDM)
Culture! Disability! Talent! (works to correct disability stereotypes by providing access and opportunities for performers and media-makers with disabilities)
The Dancing Wheels Company & School (one of America's first integrated dance companies, comprising professional dancers with and without disabilities)
DeafMedia
Disability and the arts: the best of times, the worst of times (Jo Verrent, The Guardian, 3-23-15) Introducing a new series on disability arts, producer Jo Verrent looks at some of the key issues affecting disabled artists and organisations in the sector. See The Guardian's Culture Professionals Network.
Infinity Dance Theater
International Center on Deafness and the Arts
, exploring the experience of disability through literature and the fine arts (United Disability Services)
National Arts & Disability Center (promotes the full inclusion of audiences and artists with disabilities into all facets of the arts)
National Federation of the Blind (voice of the nation's blind)
National Institute of Art and Disabilities
New York Foundation for the Arts (NYFA). NYFA’s online searchable database provides listings of sponsors, art grants, and fellowship programs for the disability community. It also provides a hotline to help artists navigate NYFA’s programs and database (1.800.232.2789).

SignStage (a division of the Community Services for the Deaf and Hard of Hearing Department, within the Cleveland Hearing & Speech Center)
Theater Breaking Through Barriers (advances the careers of artists with disabilities in New York City)
VSA Arts, the International Organization on Arts & Disability (based at the Kennedy Center, formerly Very Special Arts, and before that the National Committee - Arts for the Handicapped)
VSA Arts Registry.
Again, see fuller descriptions, addresses, and so on, on the NEA webpage, Organizations that Assist Artists with Disabilities
[Back to Top]


How putting events into a story may aid the healing process
Healing stories and storytelling organizations
Stories, healing, and self-understanding (a booklist)
Memoirs of illness, crisis, disability, differentness, and survival
Narrative medicine and medical narrative
On dealing with people who are different (on "variance from normality")
Organizations that assist artists with disabilities


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


"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
[Back to Top]
“People disappear when they die. Their voice, their laughter, the warmth of their breath. Their flesh. Eventually their bones. All living memory of them ceases. This is both dreadful and natural. Yet for some there is an exception to this annihilation. For in the books they write they continue to exist. We can rediscover them. Their humor, their tone of voice, their moods. Through the written word they can anger you or make you happy. They can comfort you. They can perplex you. They can alter you. All this, even though they are dead. Like flies in amber, like corpses frozen in the ice, that which according to the laws of nature should pass away is, by the miracle of ink on paper, preserved. It is a kind of magic.”
― Diane Setterfield, in the novel The Thirteenth Tale

****The Life Report,. First "fascinating and addictive" life stories in response to David Brooks's request on the NY Times Op Ed page (10-27-11): If you are over 70... I’d like you to write a brief report on your life so far, an evaluation of what you did well, of what you did not so well and what you learned along the way." The first life reports were followed by Life Reports II (11-28-11).

The Beneficial Effects of Life Story and Legacy Activities by Pat McNees (Journal of Geriatric Care Management, Spring 2009). Get PDF file of journal article here (61.9KB)

"It's four little words. Tell me a story. And that's all we do....Even the people who wrote the Bible were smart enough to know, tell them a story. The issue was evil in the world. The story was Noah. Now, the Bible knew that."
~ Don Hewitt, creator of television's 60 Minutes, in a documentary on his career

"Every time an old person dies, it's like a library burning down."
~ Alex Haley

"Frank identifies three basic narratives of illness in restitution, chaos, and quest. Restitution narratives anticipate getting well again and give prominence to the technology of cure. In chaos narratives, illness seems to stretch on forever, with no respite or redeeming insights. Quest narratives are about finding that insight as illness is transformed into a means for the ill person to become someone new."~from amazon review of The Wounded Storyteller: Body, Illness, and Ethics by Arthur W. Frank

“Engaging in the storytelling process helped to return identity, stability, and hope. It also encouraged mothers to expand their vision. One mother said, ‘You go through all this stuff, [and] you’re just another person with cancer. You turn into cancer, you lose your identity, but, goddamn it, you have a whole story. [Reviewing my life] put it into perspective in a really good way. It gave me a chance to feel cancer has been a hard part of my life—but only a part. I’m not just cancer. I’m this person.’”
~ from Another Morning: Voices of Truth and Hope from Mothers with Cancer by Linda Blachman

“Like the wind crying endlessly through the universe, Time carries away the names and the deeds of conquerors and commoners alike. And all that we are, all that remains, is in the memories of those who cared we came this way for a brief moment.”
~ Harlan Ellison, Paladin of the Lost Hour


“Illness is the night-side of life, a more onerous citizenship. Everyone who is born holds dual citizenship, in the kingdom of the well and in the kingdom of the sick. Although we all prefer to use only the good passport, sooner or later each of us is obliged, at least for a spell, to identify ourselves as citizens of that other place.”
~ Susan Sontag, from the preface, Illness As Metaphor


"...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


"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


"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


"The real family legacy is the stories, not the sterling."
~ Andrea Gross


"In all of us there is a hunger, marrow deep, to know our heritage - to know who we are and where we came from. Without this enriching knowledge, there is a hollow yearning. No matter what our attainments in life, there is still a vacuum, an emptiness, and the most disquieting loneliness."
~ Alex Haley, Roots