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
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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
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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)
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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
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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.


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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."
A FEW MEMOIRS ABOUT PEOPLE WHO ARE
ATYPICAL, DIFFERENT, NOT “NORMAL”

• 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.
• 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.
• Fries, Kenny, Body, Remember (born with incompletely formed legs, a congenital birth defect, Fries explores what it's like to be different)
• Grealy, Lucy. Autobiography of a Face (about growing up with Ewing's sarcoma, a cancer that severely disfigured her face)
• 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)
• 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.
• Hoge, Robert. Ugly. Read NPR interview with Mr. Hoge (9-14-16)
• 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.
**** Kusz, Natalie. Road Song (fabulous memoir about growing up in Alaska, being mauled by a sled-dog, undergoing reconstructive surgery)
• 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
• Olson, Rosanne. This Is Who I Am: Our Beauty in All Our Shapes and Sizes (photos of women with all kinds of bodies)
• 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.)

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.
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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 page 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 sister site in Boston: Center for Narrative Practice. From that webpage: "Narrative Intervention: In a situation where people are struggling due to perceived ownership of certain deeply held beliefs or concepts related to work environments, the use of narrative, stories that no one 'owns,' can allow new elements to be seen and persons to re-connect and loosen their grip on whatever issues are affecting them." And:
"Critical Theory: "Narrative is our primary device for making sense of social action. The 'Narrative Turn' in critical thinking takes as its starting point the fact that individuals, institutions, nations and cultures construct their identities by locating themselves within plotted stories. What’s more, drawing forth and attending to stories that have no place among the repertoire of 'legitimate' narratives--those of the vulnerable or silenced-- require narrative skill."
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")
Hippocrates Poetry and Medicine NHS Awards (extracts from BBC broadcasts of poets and others involved with this prize in 2014, discussing how poetry can help create new conversations in medicine. Go here for general information about the 2017 prize
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. A brilliant young neurosurgeon ignores "flashing red lights," symptoms of his own cancer-- being surprised by a stage IV lung cancer diagnosis, seeing the disease as a patient, and learning what makes life matter. “Paul Kalanithi’s posthumous memoir, When Breath Becomes Air, possesses the gravity and wisdom of an ancient Greek tragedy....The narrative voice is so assured and powerful that you almost expect him to survive his own death and carry on describing what happened to his friends and family after he is gone.”"--Boston Globe
---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
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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.
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"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
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Memoirs of illness, crisis, disability,
differentness, and survival (grouped by category)

"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.

ABUSE
• 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 learnIng of MBP in college, confronting the lie foisted on her all her life, and escaping her mother's madness.
• Hoffman, Richard. Half the House (about child abuse)
• 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)
• Latus, Janine. If I Am Missing or Dead: A Sister's Story of Love, Murder, and Liberation
• Nyala, Hannah. Point Last Seen (fleeing an abusive marriage)
• 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

ADDICTION AND ABUSE, DRUGS AND ALCOHOL
• 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."
• Farrell, Richard. What's Left of Us. A memoir of extreme heroin addiction and redemption: "a rollercoaster ride of ugliness and beauty."
• Gordon, Barbara. I’m Dancing as Fast as I Can (on addiction to prescription drugs)
• 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)
• 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.
• Waxman, Robert and Linda. Losing Jonathan (losing a beloved child to drugs)

ALS, MD, AND MS (neuromuscular disease)
ALS (amyotrophic lateral sclerosis, often called Lou Gehrig's disease) is a rapidly progressive and fatal neuromuscular disease. MS (multiple sclerosis) is a scarring and hardening of the sheath around the nerves in the brain, spinal cord, and optic nerve. MD (muscular dystrophy) is a muscular disorder with specific kinds of MD involving different muscles in the body. As explained by ALS Society of Canada here: https:/​/​als.ca/​wp-content/​uploads/​2017/​02/​ALS-MS-MD-English.pdf
• Ansay, A. Manette. Limbo: A Memoir (an undiagnosed muscle disorder cuts short her career as a concert pianist)
• 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)
• Estess, Jenifer. Tales from the Bed: A Memoir. (Estess and her sisters founded Project A.L.S. after she contracted the fatal neuromuscular disease.)
• Gleason, Trevis L. Chef Interrupted: Discovering Life's Second Course in Ireland with Multiple Sclerosis "Don't think of this book as a how-to-cope tome. Trevis Gleason's' Chef Interrupted is a wide entertainment and a joy to read. Certainly his prose abounds in Celtic wit and American audacity."--Martha King, Editor, Momentum, the magazine of the National MS Society
• 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
• Parmalee, Marlo Donato. Awkward Bitch: My Life with MS
• Pietrangelo, Ann. No More Secs Living, Laughing, & Loving Despite Multiple Sclerosis Diagnosed at 44 with relapsing/​remitting multiple sclerosis, she deals with remissions and relapses over and over, never knowing when one or the other will occur. "MS puts me in a category of people who live a double life. One foot in the world of disability, one foot in the world of the able-bodied."
• Powley, Jen. Just Jen: Thriving Through Multiple Sclerosis. Jen Powley was diagnosed with multiple sclerosis at fifteen. By thirty-five, she had lost the use of her arms and legs. She is lively, bold and unapologetic, answering questions people are often afraid to ask about living with a progressive disease. And yet, these snapshots from Powley's life are not tinged with anger or despair. Just Jen is a powerful, uplifting and unforgettable work by an author who has laid her life -- and her body -- bare in order to survive. Here is an interesting story about HOW she wrote it: Halifax author with multiple sclerosis dictated memoir line by line (y Nina Corfu, CBC News, 5-8-17) Jen Powley can't type, or hold a pen, or speak clearly, but that didn't stop her from writing Just Jen.
• Rice, Ed. If They Could Only Hear Me: A collection of personal stories about ALS and the families that have been affected.
• 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).
• 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."

ALZHEIMER’S AND OTHER FORMS OF DEMENTIA
• Bayley, John. Elegy for Iris John Bayley tenderly recalls his passionate love affair with writer Iris Murdoch, his wife of forty-two years, poignantly describing the dimming of her brilliance due to Alzheimer's disease. Part "of the charm of this enormously affecting memoir lies in the ways in which he shows the affections of old age as in no way slower than the passions of youth."--Publishers Weekly
• 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)
• Franzen, Jonathon, My Father's Brain (abstract of New Yorker story about his father and Alzheimer's disease, September 10, 2001)
• Fuchs, Elinor. Making an Exit: A Mother-Daughter Drama with Alzheimer's, Machine Tools, and Laughter. Navigating the caregiver role at a distance, Fuchs progresses over the final ten years of her mother's life from hiring part-time and then full-time caregivers, then moving "Lil" into assisted living and finally a nursing home. She had not been a good mother. Carolyn See wrote in her review, "I felt guilty, sad and more than a little voyeuristic after reading this book. MAKING AN EXIT is the story of a child abandoned, by a woman who may never really have understood the extent of her ability to hurt. The final sentence here--"The last ten years, they were our best"--leaves sadness and a hard little chill."
• 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."

AMNESIA
• 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.)

ANXIETY AND PHOBIAS
• 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.­
• Smith, Daniel. Monkey Mind: A Memoir of Anxiety. See NY Times review by Dwight Garner: Total Stranger, Unconditional Love (11-13-12)

ARTHRITIS
• 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)

ATYPICAL, DIFFERENT, NOT “NORMAL”
• 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.
• 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.
• Fries, Kenny, Body, Remember (born with incompletely formed legs, a congenital birth defect, Fries explores what it's like to be different)
• Grealy, Lucy. Autobiography of a Face (about growing up with Ewing's sarcoma, a cancer that severely disfigured her face)
• 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)
• 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.
• Hoge, Robert. Ugly. Read NPR interview with Mr. Hoge (9-14-16)
• 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.
**** Kusz, Natalie. Road Song (fabulous memoir about growing up in Alaska, being mauled by a sled-dog, undergoing reconstructive surgery)
• 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
• Olson, Rosanne. This Is Who I Am: Our Beauty in All Our Shapes and Sizes (photos of women with all kinds of bodies)
• 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.)

AUTISM
• Barron, Judy and Sean. There’s a Boy in Here (life with autism, from both mother’s and son’s viewpoint)
• 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
• 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)
• 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.
• Maurice, Catherine. Let Me Hear Your Voice: A Family's Triumph Over Autism
• 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
• 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)
• Tammet, Daniel. Born on a Blue Day (memoir of a life with synaesthesia and savant syndrome, a rare form of Asperger's syndrome)
• 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).
• McDonnell, Jane Taylor. News from the Border: A Mother's Memoir of Her Autistic Son
• 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)

BIPOLAR DISORDER
• Behrman, 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.)
• Greenberg, Michael. Hurry Down Sunshine (memoir of his daughter's first manic episode, at 15, and how her bipolar disorder affects the family)
• Hornbacher, Marya. Madness: A Bipolar Life and Sane: Mental Illness, Addiction, and the 12 Steps "The difference between now and the years when I lived in chaos is that I now have the knowledge, the tools, and the support to handle any kind of challenge, any kind of change."
• Jamison, Kay Redfield. An Unquiet Mind: A Memoir of Moods and Madness. A classic memoir about living with manic depression (including its positive aspects).
• Meissner, Tara. Stress Fracture: A Memoir of Psychosis (what its like to experience bipolar disorder)

BLINDNESS AND VISION PROBLEMS
• Bernstein,Jane. Loving Rachel (about life with a blind daughter)
• Hull, John. Touching the Rock: An Experience of Blindness (from sight problems at 13, gradually becoming blind)
• 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)
• 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)


BRAIN TUMOR AND ANEURYSM
• Krista J. Breithaupt and Andrew G. Breithaupt. Into the Shadows: An Illustrated Memoir of Brain Injury. Dr. Krista Breithaupt was enjoying a family vacation when she suffered an aneurism that left her hospitalized for months. This book is an account of brain injury and her long journey of renewal, rediscovery, and growth.
• Breslin, Jimmy. I Want to Thank My Brain for Remembering Me (on surviving a brain aneurysm).
• 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).
• Fishman, Steve. A Bomb in the Brain: A Heroic Tale of Science, Surgery, and Survival (about surviving an aneurysm).
• 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)
• Bergman, Sarah. Lost and Found: Losing My Memory, Finding Myself. Learning she has a brain tumor, changes her perspective, in good ways.
• Ross, Maria. Rebooting My Brain: How a Freak Aneurysm Reframed My Life
• Roth, Philip. Patrimony (about a father's struggles, at 86, with a brain-tumor and about the father-son relationship)

CANCER
• Broyard, Anatole. Intoxicated by My Illness (critical illness, in his case from cancer, as a spiritual journey)
• Grealy, Lucy. Autobiography of a Face (about growing up with Ewing's sarcoma, a cancer that severely disfigured her face). Also of interest: Ann Patchett’s book Truth and Beauty: A Friendship (about her strange relationship with Lucy Grealy)
• Hall, Donald. The Best Day the Worst Day: Life with Jane Kenyon. A portrait of the inner moods of "the best marriage I know about," as Hall has written, against the stark medical emergency of Jane's leukemia, which ended her life in fifteen months.
• 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)
• 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)
• Kalanithi, Paul. When Breath Becomes Air. Kalanithi's best-selling memoir (a young neurosurgeon faced with a terminal lung cancer diagnosis attempts to answer the question What makes a life worth living?) argues that we need more doctors who assimilate the humanities and more artists who assimilate the science of medicine.
• 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")
• Lord, Audre. The Cancer Journals (explores her breast cancer and mastectomy)
• Madoff, Roger. Leukemia for Chickens
• Nepo, Mark. Surviving Has Made Me Crazy. Poet and philosopher Mark Nepo was diagnosed with a rare form of lymphoma in 1987. His journey back to health awakened a new life. Also of possible interest: The Exquisite Risk: Daring to Live an Authentic Life and The Book of Awakening: Having the Life You Want by Being Present to the Life You Have
• Riggs, Nina. The Bright Hour: A Memoir of Living and Dying. A much-loved, three-hankie memoir by a young woman with a loving husband and two children, who discovers she has metastatic breast cancer and has to say goodbye to all that.
• 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

CAREGIVING
• 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.

CEREBRAL PALSY
• 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
• Brown, Christy. My Left Foot by Christy Brown. The story of an Irish boy born in Dublin in 1932, who, after a difficult birth, was developmentally disabled, probably with cerebral palsy--spastic, and pronounced an imbecile by doctors. His mother refused to believe he was imbecile and taught him to read and write (and paint with his toes). Made into a movie featuring Daniel Day Lewis. See also Christy Brown: The Life that Inspired My Left Foot by Georgina Louise Hambleton.
• 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

CROHN’S DISEASE
• Lang, Jim. Learning Sickness: A Year with Crohn's Disease

CHRONIC FATIGUE SYNDROME, CFS
• 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)
• 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)

COLITIS, ULCERATIVE
• 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.

ETHNIC, RACIAL, CROSS-CULTURAL AND RELIGIOUS DIFFERENCES

• Esther, Elizabeth. Girl at the End of the World: My Escape from Fundamentalism in Search of Faith with a Future
• Fadiman, Anne. The Spirit Catches You and You Fall Down: A Hmong Child, Her American Doctors, and the Collision of Two Cultures. This fascinating book explores the clash between a small county hospital in California and a refugee family from Laos over the care of Lia Lee, a Hmong child diagnosed with severe epilepsy. Sherwin Nuland: "There are no villains in Fadiman's tale, just as there are no heroes. People are presented as she saw them, in their humility and their frailty--and their nobility."

CYSTIC FIBROSIS
• Rothenberg, Laura. Breathing for a Living (making the most of life with cystic fibrosis that takes her life at 22)


DEAFNESS AND HEARING PROBLEMS
• 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."
• Bragg, Bernard. Lessons in Laughter: The Autobiography of a Deaf Actor
• 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.
• 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."
• 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.
• 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.
• Sidransky, Ruth. In Silence: Growing Up Hearing in a Deaf World
• 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)
• 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)

DEATH, DYING, AND BEREAVEMENT
• Beauvoir, Simone de. A Very Easy Death (about the death of her mother)
• Butler, Katy. Knocking on Heaven's Door: The Path to a Better Way of Death "Exquisitely present[s] her personal story and a critical examination of the medical profession’s handling of end-of-life care. --Publishers Weekly.
• Doty, Mark. Heaven's Coast. A powerful memoir of losing his lover to AIDS--a poet's luminous account of love and loss.
• Hill, Susan. Family (about the death of a premature child)
• 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")
• Morrison, Blake. When Did You Last See Your Father?: A Son's Memoir of Love and Loss
• Rice, Rebecca. A Time to Mourn: One Woman's Journey Through Widowhood
• 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)

DEPRESSION
• Casey, Nell, ed. Unholy Ghost: Writers on Depression
• 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.
• 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)
• Solomon, Andrew. Noonday Demon: An Atlas of Depression
• Styron, William. Darkness Visible: A Memoir of Madness (about his struggle with crippling depression)
• Wurtzel, Elizabeth. Prozac Nation: Young and Depressed in America (atypical depression and bouts with drugs)

DISABILITY, LIVING WITH
• 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).
• Crosby, Christina. A Body, Undone: Living On After Great Pain. "In 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)
• Finger, Anne. Past Due: A Story of Disability, Pregnancy, and Birth
• 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)
• 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
• 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
• 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.)
• 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)

DOWN SYNDROME
• 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
• Kingsley, Jason, and Mitchell Levitz. Count Us In: Growing Up with Down Syndrome

DRUG REACTIONS
• 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 commonly prescribed antimalarial medication, one many of us place our faith in.)
• 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)

DYSFUNCTIONAL FAMILIES
• 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.
• 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.
• 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)
• 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)
• 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).
• 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)
• 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.
• Walls, Jeannette. The Glass Castle (growing up in a decidedly eccentric, often homeless, family)
• 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.

EATING DISORDERS
• Bowman, Grace. Thin. A grippingly honest account of life with anorexia nervosa.
• 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."
• Hornbacher, Marya. Wasted: A Memoir of Anorexia and Bulimia

EPILEPSY
• 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).
• Fadiman, Anne. The Spirit Catches You and You Fall Down: A Hmong Child, Her American Doctors, and the Collision of Two Cultures. This fascinating book explores the clash between a small county hospital in California and a refugee family from Laos over the care of Lia Lee, a Hmong child diagnosed with severe epilepsy. Sherwin Nuland: "There are no villains in Fadiman's tale, just as there are no heroes. People are presented as she saw them, in their humility and their frailty--and their nobility."

GROWING UP BLACK OR MIXED-RACE
• Angelou, Maya. I Know Why the Caged Bird Sings (childhood memories of growing up black when prejudice was intense)
• 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)


GROWING UP LGBTQIA (Lesbian, Gay, Bisexual, Transgender, Queer, Intersex, Asexual)
• Dew, Robert Forman. The Family Heart: A Memoir of When Our Son Came Out
• 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.
• 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.
• 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)

HEART DISEASE
Knocking on Heaven's Door: The Path to a Better Way of Death by Katy Butler is an important book to read if you are, or are caring for, a patient with heart disease. Through the story of her father, and with final chapters that provide concise practical advice, she provides "a map through the labyrinth" of a health care system that is geared more to saving lives (no matter the cost and extended suffering) than to helping people die a good death, when death is inevitable. In her father's case, a pacemaker was installed when he was in the early stages of dementia, without fully informing the family about what that meant, or consulting about what he wanted, and it kept him alive long past when he would have wanted to die the natural death that would have come, without it. Full of essential knowledge and practical explanations in the final two chapters.
• 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)
• Hayden, Brian M. Death: Living to Talk about It. "For over twenty-years I have found myself on the verge of death and fought to stay alive. My heart attack in 1989 marked the beginning of a life and death struggle that has lasted more than twenty-years. I have been in hospice, and my family told I had three weeks to live. I was on a heart transplant list, but was removed because they said I was too sick to survive surgery."
• Larson, Thomas. The Sanctuary of Illness: A Memoir of Heart Disease. ''This powerful book conveys one man's struggle fighting heart disease. Thomas Larson describes multiple heart attacks, interventions, and his decision to try to change his fate with a plant-based diet. His example and dramatic rebound are truly inspiring.'' --Neal Barnard, M.D.¸ featured in the film, ''Forks Over Knives.''
• Martha Weinman Lear's memoir, Heart-Sounds: The Story of Love and Loss "Martha has done a remarkable job balancing her love story with Hal, her desperate, angry struggle to save him, along with tough, specific reportage on the medical profession. . . . What a sense Martha has for anecdote, for character, for time and place . . . for life.” —Patricia Bosworth (about heart disease, among other things)
• 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.
• Neugeboren, Jay. Open Heart: A Patient's Story of Life-Saving Medicine and Life-Giving Friendship

HIV/​AIDS
• Ascher, Barbara Lazear. Landscape Without Gravity (about her brother's death from AIDS).
• Brodkey, Harold. This Wild Darkness: The Story of My Death (the story of his confrontation with AIDS)
• Brunt, Carol Rifka. Tell the Wolves I'm Home. “Brunt's debut novel is both a painful reminder of the ill-informed responses to a once little-known disease and a delightful romp through an earlier decade. The relationship issues with parents and siblings should appeal to YA audiences, but adult readers will enjoy the suspenseful plot and quirky characters”—Library Journal
• Doty, Mark. Heaven's Coast. A powerful memoir of losing his lover to AIDS--a poet's luminous account of love and loss.
• Draper, Nancy A. A Burden of Silence: My Mother's Battle with AIDS
• 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)
• Johnson, Fenton. Geography of the Heart (about the death of a gay partner)
• Kincaid, Jamaica. My Brother (account of her younger brother's death from AIDS)
• Lear, Martha Weinman. Heart-Sounds: The Story of Love and Loss (heart disease)
• Monette, Paul. Borrowed Time, Becoming a Man, and Last Watch of the Night (a gay man battles AIDS)

HUNTINGTON’S DISEASE
• Wexler, Alice. Mapping Fate: A Memoir of Family, Risk, and Genetic Research (on Huntington's Disease)

ILLNESS, HEALING, AND TRANSFORMATION
• 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
• 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)
• 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)
• 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)
• Kalanithi, Paul. When Breath Becomes Air. Kalanithi's best-selling memoir (a young neurosurgeon faced with a terminal lung cancer diagnosis attempts to answer the question What makes a life worth living?) argues that we need more doctors who assimilate the humanities and more artists who assimilate the science of medicine.
• Nepo, Mark. Surviving Has Made Me Crazy. Poet and philosopher Mark Nepo was diagnosed with a rare form of lymphoma in 1987. His journey back to health awakened a new life. Also of possible interest: The Exquisite Risk: Daring to Live an Authentic Life and The Book of Awakening: Having the Life You Want by Being Present to the Life You Have
• Price, Reynolds. A Whole New Life: An Illness and a Healing (spine cancer makes him paraplegic, but liberates his imagination)
• 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)
• 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)
• Shinoda, Jean. MENTAL ILLNESS, GENERAL (and psychotherapy)
• 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."
• 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)
• 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.
• 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 learnIng of MBP in college, confronting the lie foisted on her all her life, and escaping her mother's madness.
• Israeloff, Roberta. In Confidence: Four Years of Therapy
• 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.
• 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).
• 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)
• 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 commonly prescribed antimalarial medication, one many of us place our faith in.)
• Neugeboren, Jay. Imagining Robert: My Brother, Madness, and Survival: A Memoir (his brother's 30-year struggle with mental illness)
• Phillips, Jane. The Magic Daughter: A Memoir of Living with Multiple Personality Disorder
• Pruchno, Rachel. Surrounded by Madness: A Memoir of Mental Illness and Family Secrets
• Schreber, Daniel Paul. Memoirs of My Nervous Illness (memoirs of madness, as recalled a century ago during confinement In a German mental asylum)
• Steinem, Gloria. "Ruth's Song, Because She Could Not Sing It," in Outrageous Acts and Everyday Rebellions (about childhood with a mentally ill mother)

OCD
• 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")
• 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.
• 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”)

PARALYSIS (WHEELCHAIR BOUND)
• Crosby, Christina. A Body, Undone: Living On After Great Pain. "In 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)
• 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."
• 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)
• 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)
• Hockenberry, John. Moving Violations: Moving Violations: War Zones, Wheelchairs, and Declarations of Independence
• 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
• Price, Reynolds. A Whole New Life: An Illness and a Healing (spine cancer makes him paraplegic, but liberates his imagination)
• Shinn, Kelley. A Crippled Cassandra (Intima, Fall 2013). After barely surviving meningococcemia and sepsis at 16, her legs "slowly amputated just below the knees, [her] arms and thighs debrided and skin grafted, she defies doctors, gets pregnant, and has and raises two children. "I have travelled much of the globe, including war zones; I have been mountain climbing, kayaking, dancing, and I’ve breastfed an infant while operating a tractor. " Here, "Taking a Firm Hold on the Moment".
• 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.)

PARKINSON’S
• Havemann, Joe. A Life Shaken:My Encounter with Parkinson's Disease

POLIO
• 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)
• 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)
• 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)
• 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)
• Shreve, Susan Richards. Warm Springs: Traces of a Childhood at FDR's Polio Haven (an "indelible portrait of the psychic fallout of childhood illness").

PSORIASIS
Self-Consciousness: Memoirs by John Updike. "Mr. Updike's method is Lytton Strachey's in ''Eminent Victorians'': to intuit a life by taking samples of it, making forays into its hinterland and asking the reader to assume that gaps between the specified items could readily be filled by more of much the same substance," wrote Denis Donoghue for the NY Times in 1989.'''At War With My Skin' tells of his psoriasis. 'Getting the Words Out' is a fluent account of his intermittent speech problem, variously called stammering and stuttering. Gradually we hear of further ailments: bronchial asthma, emphysema, claustrophobia, dental trouble." And he didn't join the peace movement during the Vietnam war. Those who suffer with psoriasis may particular want to listen to Terry Gross's interview with Updike on Fresh Air (1-28-09) "And remember the title of the book is 'Self-Consciousness' so I fastened upon those things which either made me self-conscious, like the psoriasis, or which showed self-consciousness, like the stuttering."

PTSD
Lucky by Alice Sebold. 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.
Waiting for First Light: My Ongoing Battle with PTSD by Roméo Dallaire with Jessica Dee Humphreys. Self-portrait of a retired general and former senator, whose nights are invaded by despair, but who at first light faces the day with the renewed desire to make a difference in the world. Traumatized by witnessing genocide on an imponderable scale in Rwanda, he reflects in these pages on the nature of PTSD and the impact of that deep wound on his life since 1994, and on how he motivates himself and others to humanitarian work despite his constant struggle.
The Evil Hours: A Biography of Post-Traumatic Stress Disorder by David J. Morris. "THE EVIL HOURS is a provocative, exhaustively researched and deeply moving analysis of traumatic memory and how we make sense of it…an essential book not just for those who have experienced trauma, but for anyone who wants to understand post-9/​11 America. Reading it will make you a better and more humane citizen." —New York Times Book Review
Tears of the Silenced: A true crime and an American tragedy; severe child abuse and leaving the Amish by Misty Elaine Griffin. This memoir is based on the true life story of Misty Griffin, a severely abused girl who was held captive by her parents until she was almost 19 years old. Author's Note: Please never turn a blind eye towards child abuse or think someone else will report it. That is what happened in my case and no one ever reported. After the fact, some individuals came forward and admitted they had thought about it, but ultimately never did. You could be that child's last chance, be a hero and report- Misty Griffin


SCHIZOPHRENIA
• 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)
• Lewis, Mindy. Life Inside (diagnosed as schizophrenic at 15, kept in a psychiatric hospital till 18, recovering for decades, believing she was never schizophrenic)
• 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)
• 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)
• 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."

SCOLIOSIS
• Will, Rosalyn. Chrysalis: A Memoir My Life Beyond the Cage of Scoliosis.

SPASMODIC DYSPHONIA
The voice gallery: Travels with a glass throat by Keath Fraser. Years after a rare vocal disorder caused Keath Fraser to nearly lose his voice, another tragedy irrevocably altered the award-winning novelist and short story writer's life. As his wife lay unconscious beside him, he was unable to call for help. For twenty years, Fraser was told by the medical establishment that his voice difficulties were psychological; that was until he discovered relief in botulinum toxin, the drug favored by Hollywood plastic surgeons in obliterating wrinkles, which miraculously--albeit temporarily--smoothed out his choppy, strangulated speech. He finally had a diagnosis: Spasmodic Dysphonia, a misfiring of the vocal chords caused by faulty transmitters in the brain. This is a memoir about the wonders and frailties of the human voice.

Finding My Voice by Diane Rehm. 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

STROKE AND TRAUMATIC BRAIN INJURY (TBI)
After the Stroke by May Sarton (the poet’s journal about recovering from a mild stroke when she is in her seventies)
Before and After Zachariah by Fern Kupfer. (about a brain-damaged child)
Being with Rachel: A Personal Story of Memory and Survival by Karen Brennan. 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.
Conquering Stroke: How I Fought My Way Back and How You Can Too by Valerie Greene.
The Diving Bell and the Butterfly: A Memoir of Life in Death by Jean-Dominique Bauby. (immobilized by a stroke, the narrator discovers the life of the unfettered imagination). Also a major movie.
My Stroke of Insight: A Brain Scientist’s Personal Journey by Jill Bolte Taylor (a story that provides hope for the brain-injured, not just those who have had a stroke, as this young brain scientist did).
One Hundred Names for Love: A Stroke, A Marriage, and the Language of Healing/a> by Diane Ackerman. When Ackerman's husband, Paul West, suffers a debilitating stroke, losing the ability to speak, prescribed therapy is not helpful. Diane harnesses their deep knowledge of each other and her scientific understanding of language and the brain and devises her own methods for guiding Paul back to the world of words, her own method of dealing with stroke-induced aphasia.
To Love What Is: A Marriage Transformed by Alix Kates Shulman (the love story of a husband and wife facing his traumatic brain injury and her transformation into caregiver)

SUICIDE
• 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)
• Hammer, Signe. By Her Own Hand: Memoirs of a Suicide's Daughter
• 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.

SURVIVING LOSS or CRISIS
• 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)
• 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.
• Wiesel, Elie. Night (powerful account of surviving the nightmare world of the Nazi death camps)

TAY-SACHS, A DEGENERATIVE DISORDER
• Rapp, Emily. The Still Point of the Turning World. Everything changed when nine-month-old Ronan was diagnosed with Tay-Sachs disease, a rare and always-fatal degenerative disorder. Rapp and her husband were forced to learn how 'to parent without a future."

TOURETTE’S SYNDROME
• 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)
• 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”)

TRANSGENDER
• 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.

VIRUSES, BACTERIAL INFECTIONS, AND AUTOIMMUNE REACTIONS
• Bailey, Elisabeth Tova.The Sound of a Wild Snail Eating. Stricken with a mysterious virus, Bailey becomes fascinated with the life of a small snail imported on a gift plant.
• Cahalan, Susannah. Brain on Fire. Journalist Cahalan describes "how she crossed the line between sanity and insanity after an unknown pathogen invaded her body and caused an autoimmune reaction that jump-started brain inflammation, paranoia, and seizures....A compelling health story." ~Booklist. A medical mystery involving a pathogen that jump-started brain inflammation, paranoia, and seizures.

WRONGFUL DEATH
• Gilbert, Sandra. Wrongful Death: A Medical Tragedy (about the death of her husband after entering the hospital for routine prostate surgery)


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
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