I arise early in the morning to work on this project. For a few hours, I am at my peak. Then, after a few hours thinking about the subject matter of these pages, my mind is no longer as fresh as it was earlier in the day. My organic brain provides me with the tools to compose this work but it also limits me by growing weary.
So I go outside to refresh myself with a little gardening. After a few hours of weeding or shoveling, my back hurts, and that is on a good day. Of course, I am among the lucky ones.
You get the idea.
Real
True Narratives
World-renowned physicist Stephen Hawking became afflicted with amyotrophic lateral sclerosis (ALS) at the age of twenty-one but went on to author numerous scientific publications and make groundbreaking contributions to theoretical physics. Commenting on his disability, he writes:
I had been very bored with life. There had not seemed to be anything worth doing. But shortly after I came out of hospital, I dreamt that I was going to be executed. I suddenly realised that there were a lot of worthwhile things I could do if I were reprieved. Another dream, that I had several times, was that I would sacrifice my life to save others. After all, if I were going to die anyway, it might as well do some good. But I didn't die. In fact, although there was a cloud hanging over my future, I found, to my surprise, that I was enjoying life in the present more than before.
Biographies on Stephen Hawking:
- Kristine M. Larsen, Stephen Hawking: A Biography (Greenwood, 2005).
- Jane Hawking, Traveling to Infinity: My Life with Stephen (Alma Books, 2007).
Video presentations:
I include books by Dr. Hawking under the heading of true narratives because they illustrate the ability of this exceptional man to do great work despite physical limitations.
- Stephen Hawking and Leonard Mlodinow, The Grand Design (Bantam, 2010).
- Stephen Hawking, A Brief History of Time (Bantam, 1998).
- Stephen Hawking, On the Shoulders of Giants: The Great Works of Physics and Astronomy (Running Press, 2002).
- Stephen Hawking, God Created the Integers: The Mathematical Breakthroughs that Changed History (Running Press, 2005).
- Stephen Hawking, A Stubbornly Persistent Illusion: The Essential Scientific Works of Albert Einstein (Running Press, 2007).
- Stephen Hawking, The Universe in a Nutshell (Bantam, 2001).
- Stephen Hawking, The Theory of Everything: The Origin and Fate of the Universe (Phoenix Books, 2006).
- Neurologist Oliver Sacks has popularized recent work in the neurosciences about how the brain processes information to form the mind and how organic limitations can prevent normal functioning. He has also written an autobiography: Oliver Sacks, Uncle Tungsten: Memories of a Chemical Boyhood (Knopf, 2001).
- Oliver Sacks, The Mind's Eye (Knopf, 2010).
- Oliver Sacks, The Man Who Mistook His Wife for a Hat and Other Clinical Tales(Simon & Schuster, 2006).
- Oliver Sacks, An Anthropologist on Mars: Seven Paradoxical Tales (Knopf, 1995).
- Oliver Sacks, The Island of the Colorblind (Knopf, 1997).
- Oliver Sacks, Migraine: Understanding a Common Disorder (University of California Press, 1992).
- Oliver Sacks, Seeing Voices: A Journey into the World of the Deaf (University of California Press, 1989).
- Oliver Sacks, Awakenings (Summit Books, 1987).
- Oliver Sacks, A Leg to Stand On (Summit Books, 1984).
Works on how organic brain abnormalities can affect personality, perception and behavior:
- V.S. Ramachandran and Sandra Blakeslee, Phantoms in the Brain: Probing the Mysteries of the Human Mind (William Morrow & Company, 1998).
- Norman Doidge, The Brain that Changes Itself: Stories of Personal Triumph from the Frontiers of Brain Science (Viking Adult, 2007).
- Aleksandr A. Luria, The Man with a Shattered World: The History of a Brain Wound (Harvard University Press, 1987).
Here are first-person narratives from people with organic brain disorders:
- Heather Sellers, You Don't Look Like Anyone I Know: The True Story of Family, Face Blindness, and Forgiveness (Riverhead Book, 2010).
- Susan R. Barry, Fixing My Gaze: A Scientist's Journey into Seeing in Three Dimensions (Basic Books, 2009).
- Frigyes Karinthy, A Journey Round My Skull (NYRB Classics, 2008).
- Howard Engel, The Man Who Forgot How to Read: A Memoir (Thomas Dunne Books, 2008).
- Daniel Paul Schreber, Memoirs of My Nervous Illness (NYRB Classics, 2000).
More general narratives on the subject:
- Lyndall Gordon, Lives Like Loaded Guns: Emily Dickinson and Her Family's Feuds (Viking Adult, 2010).
- Daphne Merkin, This Close to Happy: A Reckoning With Depression (Farrar, Straus & Giroux, 2017). “The same tinge of self-aware narcissism that makes the book at times so annoying makes it finally triumphant.”
- Nassir Ghaemi, A First-Rate Madness: Uncovering the Links Between Leadership and Mental Illness (Penguin Press, 2011): “It may be fine to like Ike during periods of smooth sailing, but Lincoln and a little lunacy are the ticket when seas get rough: ‘For abnormal challenges,” Ghaemi insists, “abnormal leaders are needed.’”
- Sara Manning Peskin, A Molecule Away from Madness: Tales of the Hijacked Brain (W.W. Norton & Company, 2022): “. . . errant molecular activity underlies many serious mental afflictions . . .”
On other physical systems:
- Rose George, Nine Pints: A Journey Through the Money, Medicine, and Mysteries of Blood (Metropolitan Books, 2018): a “Brisk Biography of Blood”
- Heather Lanier, Raising a Rare Girl: A Memoir (Penguin Press, 2020): “Wolf-Hirschhorn syndrome, the genetic disorder that afflicts Lanier’s daughter, is characterized by the deletion of genetic material, leading to a constellation of severe physical and mental disabilities.”
- Taylor Harris, This Boy We Made: A Memoir of Motherhood, Genetics, and Facing the Unknown (Catapult, 2023), describes Harris’ “relentless, twisting quest to understand the genetics of why the gentle, dancing toddler ‘Tophs,’ with his chubby cheeks, comes to experience a maddening assortment of maladies and challenges over his young life.”
- John Hendrickson, Life on Delay: Making Peace with a Stutter (Alfred A. Knopf, 2023): “. . . part of what Hendrickson writes about so beautifully is the movement to destigmatize the condition; instead of trying to run away from it, some stutterers accept it as a part of who they are.”
Technical and Analytical Readings
- Antonio R. Damasio, Descartes' Error: Emotion, Reason, and the Human Brain (Putnam Adult, 1994).
- Adrian Raine, The Anatomy of Violence: The Biological Roots of Crime (Pantheon Books, 2013): an attempt “to persuade the skeptical reader to take biology seriously.”
- Eric R. Kandel, The Disordered Mind: What Unusual Brains Tell Us About Ourselves (Farrar, Straus & Giroux, 2018).
- Carl Zimmer, She Has Her Mother’s Laugh: The Powers, Perversions, and Potential of Heredity (Dutton, 2018): “ . . . Zimmer . . . uses history to offer a rigorous introduction to the basic principles of genetics, and molecular and developmental biology.”
- Alan Schwarz, ADHD Nation: Children, Doctors, Big Pharma, and the Making of an American Epidemic (Scribner, 2016): “ . . . should be required reading for those who seek to understand how a field that once aimed to ameliorate the behavioral problems of children in a broad therapeutic context abdicated its mission to the stockholders of corporations like Shire and Lilly. Schwarz is sounding an alarm for a fire that looks nowhere near abating.”
Photographs
Documentary and Educational Films
Imaginary
Fictional Narratives
In relating Cosette’s feelings and self-image, Hugo muses on the curse of many physically beautiful women:
Knowing that she was beautiful, she was thoroughly conscious, though in an indistinct fashion, that she possessed a weapon. Women play with their beauty as children do with a knife. They wound themselves. [Victor Hugo, Les Misérables (1862), Volume IV – Saint-Denis; Book Third – The House in the Rue Plumet, Chapter VI, “The Battle Begun”.]
. . . his whole person was a grimace. A huge head, bristling with red hair; between his shoulders an enormous hump, a counterpart perceptible in front; a system of thighs and legs so strangely astray that they could touch each other only at the knees, and, viewed from the front, resembled the crescents of two scythes joined by the handles; large feet, monstrous hands; and, with all this deformity, an indescribable and redoubtable air of vigor, agility, and courage,—strange exception to the eternal rule which wills that force as well as beauty shall be the result of harmony. Such was the pope whom the fools had just chosen for themselves. [Victor Hugo, Notre-Dame de Paris, or, The Hunchback of Notre Dame (1831), Volume I, Book First, Chapter V, “Quasimodo”.]
Novels:
- Anna DeForest, A History of Present Illness: A Novel (Little, Brown and Company, 2022): “The worst thing the doctors do is not even their fault, though: Powerful machines and powerful incentives drive them to prolong life artificially, when it serves only to draw out suffering.”
- Emily Habeck, Shark Heart: A Love Story (S&S / Mary Lou Rucci Books, 2023) “succeeds because it doesn’t function solely on the level of metaphor. In the world of the book, human-to-animal mutations are a lamentable but very real fate, like metastatic cancer or mental illness.”
Poetry
- Edgar Lee Masters, “Ami Green”
- Edgar Lee Masters, “Francis Turner”
- Edgar Lee Masters, “Willie Pennington”
- Jorge Luis Borges, “On His Blindness”
Music: Composers, artists, and major works
Many great pianists have exceptionally long hands. This may be an oddity in social settings but it allows them to cover the keyboard more easily than a person with fingers of normal length. Vladimir Horowitz is a case in point. His personal story also reflects important physiologically-based characteristics. “Despite his marriage, there is considerable independent evidence that Horowitz was gay. . . Horowitz underwent psychological treatment in the 1950s in an attempt to alter his sexual orientation. In the early 1960s and again in the early 1970s, he underwent electroshock therapy for depression.” “Famously high-strung, his art always a mental-physical high-wire act, Horowitz took four sabbaticals from public performance to deal with various issues, his returns much-ballyhooed events.” Horowitz’s recorded legacy is impressive; here are links to videos highlighting his pianistic romanticism (83’), live at Carnegie Hall in 1940 (48’), in New York in 1945 (97’), a recital in 1948 (93’), a concert at Carnegie Hall in 1951 (95’), a televised Carnegie Hall concert in 1968 (51’), live in Milan in 1985 (77’), live at Carnegie Hall in 1985 (90’), live at Wiener Musikverein in 1987 (91’), and a performance of Rachmaninoff’s Piano Concerto No. 3 (37’). Here is a brief visual display of the master’s hands at work.
Michel Petrucciani “was born with osteogenesis imperfecta, also known as ‘glass bones,’ a disease that stunted his growth (he was only three feet tall and weighed barely 50 pounds) and weakened his bones.” “Petrucciani had to be carried onto the stage and had a special attachment to use the sustaining pedal of the piano.” Despite that, he became a top jazz pianist. “He grew up surrounded by music as his father was a guitarist and his brothers were a bassist and a guitarist.” Though he died at an early age, he left an impressive set of playlists. His live performances include those at the Village Vanguard in 1985 (53’), in Barcelona in 1989 (53’), at Umbria Jazz Festival in 1991 (42’), at Brecon Jazz Festival in 1992 (37’), in Stuttgart in 1993 (65’), in Marciac in 1996 (44’), at JazzBaltica in 1996 (57’), in Munich in 1997 (79’), and in Stuttgart in 1998 (60’).
Country singer Hank Williams was born with spina bifida, which caused him pain throughout his life. He became dependent on alcohol, perhaps in an effort to ease his back pain. His brief but exceptional life is the subject of biographies and other books by Colin Escott, Colin Escott, Roger M. Williams, Patrick Huber, et. al., eds., and Randal Myler & Mark Harelik. Despite his early death, he is a country music icon, having made many recordings. Here he is live in 1952, and on his final televised appearance.
Compositions:
- Raga Komal Rishab Asavari (Komal Rișabh Āsāvari), “often simply called Asavari, is a raga in Hindustani classical music”, a raag for late morning, invoking allure. Performances are by Bhimsen Joshi, Amir Khan, Venkatesh Kumar, Ulhas Kashalkar, Bade Ghulam Ali Khan, and Bhimsen Joshi.
Music: songs and other short pieces
- Beyoncé, “Pretty Hurts” (lyrics)
- Meghan Trainor, “All About That Bass” (lyrics)
- James Bay, “Scars” (lyrics)
Visual Arts
Film and Stage
- The Elephant Man, about agrossly deformed and intelligent man in 19th century Britain, who is displayed as a carnival freak but then taken to a hospital for analysis. Though treated more humanely there, he never escapes being seen as a curiosity.
- Children of a Lesser God, about a woman, completely deaf from birth, whose resentments lead her to struggle with life and love
- Awakenings, based on the clinical work of Oliver Sacks
- Moulin Rouge, about Henri Toulosse-Lautrec’s struggle with physical abnormality
- Darling, about a beautiful womanwho commands men’s attention
- Cyrano de Bergerac: did his large nose prevent him from winning the affections of his adored Roxanne or did it merely get into his head? (See also the 1950 version.)
- A Hatful of Rain, about narcotics addiction
- Splendor in the Grass, on the lureof sexual attraction