5 inspiring autobiographies from people with brain damage
I frequently read biographies and case studies where people lose something dear. If you judge these books by their covers, you may presume them to be depressing. But if you read the right ones, they are quite inspiring, as stories of overcoming hardships.
I find reading these true stories useful for keeping my life and health in perspective. One area of books I am drawn to are those written (or co-written) by people who have experienced brain damage. The details of hardship in these books make me appreciate all of things that my brain does for me without me realizing it. Thank you, brain. Here are five of them that I recommend to anyone with a brain.
1) The Diving Bell and the Butterfly
This book was written by Jean-Dominique Bauby, transcribed by Claude Mendibil, and the English version that I read was translated by Jeremy Leggatt. I mention the transcribe and the translator not just because they deserve credit, but because Bauby wrote this book under extreme circumstances.
Originally written in French, this book was written by a man with locked-in syndrome, who communicated the entire book by eye blinks. Bauby, who was a writer for a fashion magazine, suffered an accident which left him almost entirely paralyzed. His transcriber (to whom he refers as “Claude”) patiently sat with him and read aloud letters until Bauby selected one by blinking, wrote it down, and then repeated this process. My favorite chapter of the book is the one in which Bauby describes this process, a chapter called “The Alphabet”
This book is not inspiring because Bauby overcame his illness. He did not, in fact, recover, as most people with locked-in syndrome do not. As explained on the inside flap of the cover of the book, Bauby died just two days after the French publication of this book. Instead, this book is inspiring because he was able to write the book in the first place.
At times it is profound, such as when attempts to describe his memories from before the accident and they come out “gray, muted, resigned…”
At times it is emotional, such as when he describes his relationship with his wheelchair as “a life sentence”, and the way that he can only wear clothing when someone chooses to put it onto him.
At times it is sensational, by which I mean tapping into the human senses of hunger. You’ll feel the pain when he describes his inability to eat and enjoy food, and the hearing disorder that makes him extra sensitive to the hospital noises outside of his room when someone forgets to shut his door after visiting (a problem he cannot remedy until another visitor shows up to close it).
Overall, this short book is worth reading over the course of an evening, just to dwell in the brilliant mind of someone who couldn’t escape.
2) The Ghost in my Brain
This book was written by Clark Elliot, PhD. He was in a car accident where he was hit from behind, resulting in a severe concussion. He did not, however, understand the severity of the brain damage that resulted from this crash until later. In fact, he gave a lecture at his university the same day following the crash. He delayed seeking medical help because the very act of the concussion had stolen his ability to understand what was wrong with him.
The greatest aspect of this book is they way that Dr. Elliot describes the events as they unfolded, with numerous examples of specific scenes and behaviors. He describes these in such a way that are extremely helpful for putting the reader into his shoes. His shares his own frustration with himself, for example, for the mistakes and problematic situations that he was getting himself into because of the concussion. The most notable example is nearly freezing to death in the opening chapter called “Midnight”, but I won’t spoil that scene for you.
Dr. Elliot had a long list of symptoms that began to appear. He began having memory problems, perceptual problems (such as failing to understand which objects he was looking at), and executive function problems such as issues with decision-making and initiating actions.
There is a passage in this book called “The Mystery of Choice” that sticks with me every time I try to make a decision. Dr. Elliot is hungry, and needs to eat some food. That sounds simple enough, but the real problem came when he needed to decide what to eat. He had placed two options in front of him: an apple and some salami, and all he needed to do was prepare the food and eat it. But he could not decide which food item to focus on first! After two days of being unable to decide what to eat, he finally called a friend, who decided for him.
This book is full of strange and unexpected problems such as this, and Dr. Elliot wrote it in a way that is highly intelligent and highly accessible. You’ll learn a great amount about processes that your brain is doing without you even needing to think about them. Dr. Elliot eventually recovers, and the way he approaches doing this is by itself, fascinating. But I won’t ruin it for you!
3) My Lobotomy
This book was written by Howard Dully and Charles Fleming. Howard Dully is one of the last surviving people who had a procedure called a lobotomy.
Brain surgery (or “psychosurgery”) is inherently terrifying. The brain is what makes consciousness and “humanness” possible, and the fact that it can be operated on with a scalpel and taken away from us is disturbing in a way beyond all other surgical procedures. But the lobotomy was a different beast altogether.
The lobotomy, historically called a leucotomy, was a procedure wherein the frontal lobes of a person’s brain were intentionally damaged. The idea was that because the frontal lobes influence a person’s behavior, they could change those people with behavioral problems for the better by operating on that part of the brain. And changed they were, but not for the better.
Howard Dully was just 12 years old at the time of his lobotomy in the year 1960. He received the procedure from Walter Freeman, the most famous of the doctors that would perform the procedure. Dully shares notes from the meetings leading up to the surgery, and notes from the procedure itself, revealing the heartbreaking details of an abusive step-mother who wanted her step-son brain-damaged because of some mild behavior problems.
Ironically, the lobotomy probably produced even more behavioral problems, because the frontal lobes are the areas that allow people to resist impulsive actions. Additionally, Dully began having memory problems.
Throughout the book, Dully tells the story of his life, including the many difficulties he suffered following the lobotomy. They include stints in asylums and juvenile detention centers, as well as problems with drugs and homelessness.
Were his problems with life and the law really just problems from the lobotomy? It’s hard to say for sure, but at least Dully gets a happy ending in the conclusion of this book.
4) Prognosis
This book was written by Sarah Vallance, PhD. She was thrown off of a horse and into a world where a blow to the head made everything from writing, to relationships, to work, exceedingly difficult.
At the time of her accident, she was in graduate school and working on her dissertation in order to receive her PhD in government and public administration. Following the accident, she was unable to comprehend the parts of the dissertation that she had written so far, as she describes in a heart-breaking scene where she opens the now-mysterious documents on her computer.
One powerful scene that depicts the severity of her brain damage is the scene in which she describes attempting to read some journal articles. She flips through the pile on her desk that she had left there before the accident, unable to grasp even a single title page. Eventually, she tries something new, and begins copying over the words from the page onto a new page, carefully transcribing the words that she could not comprehend.
The relationships in this book are the highlight of the read, from her loving and heartbreaking relationships with her dogs, to her difficult mother, to the people she loves along the way. As you read, you’ll experience her newfound social problems, especially anger, and self-frustration.
As Dr. Vallance progresses through her degree, several high-paying jobs, and international trips, she is often told by those around her that they don’t see anything wrong with her, and that “You’re just making excuses…” But as the reader, you’ll get to see what they couldn’t see in the pages of this book, from the long months spent alone with her dogs, to the daily struggles with memory and slow cognitive functioning.
5) Ghost Boy
This book was written by Martin Pistorius, with Megan Lloyd Davies. Pistorius developed a mysterious degenerative neurological problem when he was a young boy, for which “no conclusive diagnosis was made.” He lost control of his muscles, and appeared to be in a “waking coma” at all times. This led to him spending his days in a care home, where it was assumed that he was not consciously experiencing life.
And based on Pistorius’ telling of his story, that seems to have been true at first. But then, after a few years of nothing, his consciousness began to re-emerge. Over the course of about three years, he became fully aware of everything that was happening to him, although he could not respond by moving or speaking in any notable pattern. It was a sort of locked-in syndrome, although an unusual case.
Eventually, one caretaker did notice that he was responding in subtle ways when spoken to. He was able to smile and move his head to some degree, but others assumed that those were mere reflexes and not consciously intended actions meant to communicate that someone was trapped inside. Using such movements and help from those around him, he began to experiment with using computer-assisted speech.
One of my favorite parts of this book is when Pistorius describes the process of him slowly regaining awareness of the fact that he was experiencing life. He describes it as “coming up for air” and a process where he “came back to life.”
In this book, he expresses countless frustrations with being unable to choose when he ate, when he bathed, and what television he watched. He describes the strange feelings that being able to ask for things he wanted using his computer stirred in him, as he was unfamiliar with expressing his own desires in a way that people understood.
In the short and powerful chapter called “The Real Me”, Pistorius sends a woman that he is interested in an email. In the email, he describes all of things that he cannot, sharing the details of all of the extra care that she would be signing up for if she were to love him. I won’t share exactly how that works out, but you’ll be happy to know that Pistorius gets a happy ending.