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Memoirs of coping with chronic, rare, or invisible diseases, including mental health problems

July 15, 2011

Tags: memoirs, illness, mental illness, chronic diseases, disabilities, genetic disorders

Because I have a website providing resources about illness, recovery, dying, and grief, I am often asked to recommend books that will help people cope with a medical or mental health problem. I find that memoirs are often most helpful because they provide the narrative account of an illness that someone coping with a crisis is most likely to be able to concentrate on and get something out of (including understanding of their own emotional turmoil. These are some of the titles I recommend.

• Ansay, A. Manette. Limbo: A Memoir (an undiagnosed muscle disorder cuts short her career as a concert pianist)

• Barron, Judy and Sean. There's a Boy in Here (life with autism, from both mother's and son's viewpoint)

• Bauby, Jean-Dominique. The Diving Bell and the Butterfly: A Memoir of Life in Death (immobilized by a stroke, the narrator discovers the life of the unfettered imagination)

• Bernstein,Jane. Loving Rachel (about life with a blind daughter)

• Black, Kathryn. In the Shadow of Polio: A Personal and Social History (a memoir of Black's childhood experience of a mother in an iron lung, wrapped in the larger story of the search for a cure)

• Bragg, Bernard. Lessons in Laughter: The Autobiography of a Deaf Actor

• Breslin, Jimmy.I Want to Thank My Brain for Remembering Me

• Brodkey, Harold. This Wild Darkness: The Story of My Death (the story of his confrontation with AIDS)

• Brookes, Tim. Catching My Breath: An Asthmatic Explores His Illness

• Brown, Harriet. Brave Girl Eating: A Family's Struggle with Anorexia (by the author of Feed Me!: Writers Dish About Food, Eating, Weight, and Body Image)

• Brown, Ian. The Boy in the Moon: A Father's Search for His Disabled Son. Memoir of Brown's relationship with his son, Walker, born with a rare genetic disorder that leaves him profoundly developmentally disabled. Not yet for sale in USA; available through Amazon Canada (based on Brown's excellent illustrated series, The Boy in the Moon in Canada’s Globe & Mail).

• Casey, Nell, ed. Unholy Ghost: Writers on Depression

• Casey, Nell, ed. An Uncertain Inheritance: Writers on Caring for Family (and some writers on being cared for)

• 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)

• Costello, Victoria. A Lethal Inheritance: A Mother Uncovers the Science Behind Three Generations of Mental Illness ) (partly about her sons' depression and schizophrenia). See her essay: The Implications of plot lines in narrative and memoir.

• Cousins, Norman. Anatomy of an Illness as Perceived by the Patient (a classic take on how attitude, and especially laughter, affects health outcomes)

• DeBaggio, Thomas. Losing My Mind: An Intimate Look at Life with Alzheimer's (the early memories and the daily struggle of a man coming to terms with a progressively debilitating illness)

• Dendy, Chris A. Zeigler and Alex Zeigler. A Bird's-Eye View of Life with ADD and ADHD: Advice from young survivors (for children and teenagers with the disorder)

• 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)

• Edwards, Laurie. Life Disrupted: Getting Real About Chronic Illness in Your Twenties and Thirties

• Ellison, Katherine. Buzz: A Year of Paying Attention , captured partly in her Washington Post article, For ADHD, lots of snake oil, but no miracle cure

• Finger, Anne. Past Due: A Story of Disability, Pregnancy, and Birth (the politics of pregnancy with a disability, brought to life -- in this case from a woman whose childhood was made more difficult by surviving both polio and an abusive father). For more about the illness that left her disabled, read her Elegy for a Disease: A Personal and Cultural History of Polio

• Fishman, Steve. A Bomb in the Brain: A Heroic Tale of Science, Surgery, and Survival (about surviving an aneurysm)

• Frank, Arthur W . At the Will of the Body: Reflections on Illness (explores what illness can teach us about life, drawing on his experience having a heart attack and cancer)

• Franzen, Jonathon. My Father's Brain (abstract of New Yorker story about his father and Alzheimer's disease, September 10, 2001)

• Fries, Kenny, Body, Remember (a fascinating, beautifully written memoir of creating a life and identity based not only on being "different"--in Fries' case, being gay, Jewish, and very short, because he was born with incompletely formed legs). Contains explicit sex scenes.

• 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)

• Gordon, Barbara. I’m Dancing as Fast as I Can (on her addiction to prescription drugs)

• Gordon, Mary. Circling My Mother (Gordon's memoir of her Irish Catholic mother, deformed by polio, eventually suffering dementia — and of their complex mother-daughter relationship)

• Grandin, Temple. Emergence: Labeled Autistic (written with Margaret M. Scariano); Thinking in Pictures (the best-known of her books about growing up with autism); and Animals in Translation: Using the Mysteries of Autism to Decode Animal Behavior. Diagnosed autistic as a child, self-described as having Asperger's Syndrome more recently, Temple Grandin has probably done more than any other person to help people understand how it feels to be autistic, what "autism spectrum" means, and what special gifts and limitations autism may bring (in her case, understanding what animals need, which has created a unique professional niche for her, fascinating to read about).

• Grant, Linda. Remind Me Who I Am, Again. About how her mother's vascular dementia (brought on by small strokes) exacerbates Grant's troubled relationship with the woman.

• Grealy, Lucy. Autobiography of a Face (about growing up with Ewing's sarcoma, a cancer that severely disfigured her face)

• Greenberg, Michael. Hurry Down Sunshine (memoir of his daughter's first manic episode, at 15, and how her bipolar disorder affects the family)

• Hadas, Rachel. Strange Relation: A Memoir of Marriage, Dementia, and Poetry. Hadas's memoir of "losing" her husband to frontotemporal dementia.

• 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)

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

• Hoffman,Richard. Half the House (about child abuse)

• 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)

Hornbacher, Marya. • Madness: A Bipolar Life. Hornbacher's memoir of her life with rapid cycling type 1 bipolar disorder, starting as a toddler when she couldn't sleep at night.

• Hornbacher, Marya.Wasted: A Memoir of Anorexia and Bulimia . Written at 23 for young adults, this brutally candid memoir may "trigger" those still in grips or early stages of disease, say some readers, serving as a how-to guide for eating disorders. Good insight for families of those with ED.

• Hull, John. Touching the Rock: An Experience of Blindness (from sight problems at 13, gradually becoming blind)

• Hutchinson, Bryan L. One Boy's Struggle: A Memoir: Surviving Life with Undiagnosed ADD

• Israeloff, Roberta. In Confidence: Four Years of Therapy

• Jamison, Kay Redfield. An Unquiet Mind: A Memoir of Moods and Madness

• Jezer, Marty. Stuttering: A Life Bound Up in Words

• Kaysen,Susanna. Girl, Interrupted (a young girl's experiences with mental illness)

• Kincaid, Jamaica. My Brother (account of her younger brother's death from AIDS)
• Kingsley, Jason, and Mitchell Levitz. Count Us In: Growing Up with Down Syndrome

• Kleege, Georgina. Sight Unseen (marginally sighted and legally blind at 11 from macular degeneration, Kleege explores the meaning and implications of blindness and sightedness, reminding us that only a fraction of blind people see nothing at all)

• Kupfer, Fern. Before and After Zachariah (about a brain-damaged child)

• Kusz, Natalie. Road Song (growing up in Alaska, being mauled by a sled-dog, undergoing reconstructive surgery)

• Kuusisto, Stephen. Eavesdropping: A Memoir of Blindness and Listening (in this sequel to Planet of the Blind, the author learns to live by ear)

• Kuusisto, Stephen. Planet of the Blind (blind in one eye and nearly blind in the other, at his mother's urging he feigns sightedness until coming to terms with his condition)

• Lachenmeyer, Nathaniel. The Outsider: A Journey into My Father's Struggle with Madness (in which the author tries to reconstruct his father's downward spiral from a promising career as a sociology professor to his death as a schizophrenic vagrant, eluding police)

• Lang, Jim. Learning Sickness: A Year with Crohn's Disease

• Lear, Martha Weinman. Heart-Sounds: The Story of Love and Loss (heart disease)

• Levy, Andrew. A Brain Wider Than the Sky: A Migraine Diary ("part memoir, part historical inquiry, part philosophical meditation")

• Lewis, Cathleen.Rex: A Mother, Her Autistic Child, and the Music that Transformed Their Lives (the moving story of a mother and her child, a boy who is blind, autistic, and a musical savant)

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

• Linton, Simi. My Body Politic: A Memoir . Carol Tavris (author of Anger: The Misunderstood Emotion ) wrote of Linton's memoir: "Witty, original, and political without being politically correct, introducing us to a cast of funny, brave, remarkable characters (including the professional dancer with one leg) who have changed the way that 'walkies' understand disability. By the time Linton tells you about the first time she was dancing in her wheelchair, you will feel like dancing, too."

• 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").

• Maurice, Catherine. Let Me Hear Your Voice: A Family's Triumph Over Autism

• McDonnell, Jane Taylor. News from the Border: A Mother's Memoir of Her Autistic Son

• McKee, Steve. My Father’s Heart: A Son’s Journey (a tender memoir about suburban life in York, PA and Buffalo, NY -- in the 1960s, in every sense a “family history,” shedding light on heart disease, especially as inherited in families). Check out Steve McKee’s blog , too.

• McLean, Richard. Recovered, Not Cured: A Journey Through Schizophrenia (a brief, readable memoir by a gay Australian artist whose drawings vividly illustrate the story he tells about his life and mind with schizophrenia)

• Monette, Paul. Borrowed Time, Becoming a Man, and Last Watch of the Night (a gay man battles AIDS)

• Monks, Millicent. Songs of Three Islands: A Story of Mental Illness in an Iconic American Family. A memoir of the Carnegie family, also written about by Lisa Belkin in the Times story, One Family and Its Legacy of Pain (8-11-10)

• Neugeboren, Jay. Imagining Robert: My Brother, Madness, and Survival: A Memoir (his brother's 30-year struggle with mental illness)

• Neugeboren, Jay. Open Heart: A Patient's Story of Life-Saving Medicine and Life-Giving Friendship

• 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)

• Phillips, Jane. The Magic Daughter: A Memoir of Living with Multiple Personality Disorder

• Rhett, Kathryn, ed. Survival Stories: Memoirs of Crisis

• Richmond, Lewis. Healing Lazarus: A Buddhist’s Journey from Near Death to New Life (viral encephalitis sends him into coma, and in recovery he experiences an acute neuropsychiatric complication from a therapeutic drug)

• Robinson, Jill. Past Forgetting: My Memory Lost and Found ( a compelling account of severe memory loss as the result of a seizure, by a fine novelist who grew up in Hollywood , as daughter of writer and film executive Dore Schary)

• Robison, John Elder. Look Me in the Eye: My Life with Asperger's (an interesting book made more so by the fact that he is the brother of Augusten Burroughs, author of Running with Scissors, and tells from a different angle some of the same stories from their bizarre childhood)

• Roth, Philip. Patrimony (about a father's illness and about the father-son relationship)

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

• Sacks, Oliver. Migraine

• Saks, Elyn. The Center Cannot Hold: My Journey Through Madness (a fascinating memoir of the internal chaos and external unfairness that have made a life with schizophrenia so difficult for this professor of law and psychiatry, and of the talk therapy—indeed, psychoanalysis—she felt was as important as medication in helping her live a high-functioning life as a professor of law and psychiatry)

• Sarton, May. After the Stroke (the poet's journal about recovering from a mild stroke when she is in her seventies)

• Scheff, David. Beautiful Boy: A Father's Journey Through His Son's Addiction (chronicling a precocious teenager's spiral downward from abuse of mind- and mood-altering drugs to meth addiction)

• Scheff, Nic. Tweak: Growing Up on Methamphetamines (the son's story, companion book to Beautiful Boy)

• Schreber, Daniel Paul. Memoirs of My Nervous Illness (memoirs of madness, as recalled a century ago during confinement In a German mental asylum)

• Shawn, Allen. Wish I Could Be There: Notes from a Phobic Life — part memoir, part explanation, a beautifully written and fascinating account of Shawn's own anxiety and agoraphobia, and a fine summary of what is known about how we form and can learn to manage anxiety and phobias.

• Shields, David. The Thing About Life Is That One Day You'll Be Dead (personal history melds with riveting biological info about the body at every stage of life — an "autobiography of the body")

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

• Sidransky, Ruth. In Silence: Growing Up Hearing in a Deaf World

• Sienkiewicz-Mercer, Ruth and Steven B. Kaplan. I Raise My Eyes to Say Yes. (Encephalitis at 5 weeks left Ruth, a healthy baby, paralyzed and unable to speak normally. Diagnosed an imbecile at 5 years, she was eventually institutionalized and severely mistreated at a school for the mentally and physically disabled until a staff turnover brought her help, including a method for communicating.)

• Skloot, Floyd. The Night-Side: Chronic Fatigue Syndrome and the Illness Experience (an account of how a mysterious and life-altering illness struck overnight, dramatically changing Skloot's life, and how he dealt with it); a later memoir, In the Shadow of Memory, contains essays about Skloot's experience of losing his memory after being infected by a virus and struggling to regain lost memories.

• Solomon, Andrew. Noonday Demon: An Atlas of Depression

• Spradley, Thomas S. and James P. Deaf Like Me (parents of a child born deaf as the result of an epidemic of German measles waste years avoiding sign language before learning how to communicate with their child)

• Steinem, Gloria. "Ruth's Song, Because She Could Not Sing It," in Outrageous Acts and Everyday Rebellions (about childhood with a mentally ill mother)

• Styron, William. Darkness Visible (about his struggle with crippling depression)

• Sutcliff, Rosemary. Blue Remembered Hills: A Recollection (the memoir of one of Britain’s best-loved historical novelists, crippled and badly disabled from the age of three by Still’s Disease, a form of juvenile arthritis)

• Tammet, Daniel. Born on a Blue Day (memoir of a life with synaesthesia and savant syndrome, a rare form of Asperger's syndrome)

• Taylor, Blake E.S. ADHD & Me: What I Learned from Lighting Fires at the Dinner Table. Memoir and lessons learned by a college freshman, diagnosed with attention deficit hyperactivity disorder (ADHD) when he was five

• Taylor, Jill Bolte. My Stroke of Insight: A Brain Scientist's Personal Journey (a story that provides hope for the brain-injured, not just those who have had a stroke, as this young brain scientist did)

• Walker, Lou Ann. A Loss for Words: The Story of Deafness in a Family

• Waxman, Robert and Linda. Losing Jonathan (losing a beloved child to drugs)

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

• Wilensky, Amy S. Passing for Normal (a compelling account of life with a long-delayed diagnosis of Tourette's syndrome and obsessive-compulsive disorder — and an "exploration of the larger themes of difference and the need to belong")

• Willey, Liane Holliday. Pretending to Be Normal: Living with Asperger's Syndrome (a mother's account of her own and her daughter's life with Asperger's syndrome)

• Williams, Donna. Nobody Nowhere (growing up as an autistic child, and a far different story from others listed here)

• Wilson, A.N. Iris Murdoch As I Knew Her. A literary memoir that portrays "Murdoch as novelist & thinker, not Alzheimers poster child," as one reviewer put it, by contrast with the books by Murdoch's husband, John Bayley, especially Elegy for Iris.

• Wurtzel, Elizabeth. Prozac Nation: Young and Depressed in America (atypical depression and bouts with drugs)

• Young, Joan W.. Wish by Spirit: A journey of recovery and healing from an autoimmune blood disease. Joan contended with immune (idiopathic) thrombocytopenic purpura but this may be helpful for anyone with a platelet disorder.

This list is posted also on a website that has expanded well beyond its formal name:

DYING: A BOOK OF COMFORT. Turns out a lot of people who face mortality don't necessarily die when they expect to -- so there are lots of other things to think and read about. I built that website to provide material I did not include in the anthology of the same name, particularly material about copying with illness and disability.

Comments

  1. March 13, 2012 1:36 PM EDT
    "FOREVER MARKED: A Dermatillomania Diary" by Angela Hartlin is a memoir (her daily account) of living with Dermatillomania, the unknown skin picking disorder that plagues millions in North America. She goes through depression, thoughts of suicide, frustration, isolation, and emotional growth as she fights through the negative feelings holding her back from life. A 12 page preview can be read here: http://www.lulu.com/product/paperback/forever-marked-a-dermatillomania-diary/12189563 Pat inserts: You can also buy it at Amazon Here is a YouTube video of a TV interview with Angela, showing the visible physical effects of this disorder: CTV's "Live at 5" (on Dec. 8, 2009).
    - Serenity