Although I am not a literary critic nor a prolific reader, there are several books which I deem highly worthy of reading. This holds true for individuals with an interest in the subject matter and for anyone who seeks well-written non-fiction.
As a neurologist working with an indigent population (many with epilepsy), having a personal connection with epilepsy, a novice artist, and founder of the non-profit, Hidden Truths Project, Art of Epilepsy program, each of the following books have impacted me on various levels.
Below are five books, each with a with unique storyline, told by those whose lives have been impacted by epilepsy. As the prose unfolds on the page, the reader is provided with unparalleled insight into the layered complexity of epilepsy and the brain. The various stories encompass the anthropological aspects of epilepsy; the impact of epilepsy on family dynamics; the graphically rendered reflection of epilepsy told through the perspective of a younger sib; a memoir from an individual with epilepsy confronted with stigma, discrimination, and abuse; and a poetically written autobiography, by an author whose body and mind is consumed by epilepsy, medication side effects, and a brain tumor.
All to reveal the truths of epilepsy from the inside-out.
The Spirit Catches You and You Fall Down by Anne Fadiman
Quag dab peg. Quag: to fall over with one’s roots still in the ground. Dab: the spirit, which is soul stealing. Peg to catch or hit, in other words, epilepsy. In The Spirit Catches You, Ms. Fadiman accounts the story of a Hmong child in Merced, California diagnosed with a devastating form of epilepsy, Lennox-Gastaut syndrome. The story revolves around the conflict between the Hmong belief that epilepsy is spiritual in origin, caused when the soul separates from the body, and the American medical community approach to treatment of this condition based on scientific knowledge.
The Spirit Catches You brings to light the need to develop a better appreciation and understanding of these members of our society, especially as it relates to health and disease. For physicians, it is imperative to address not just the seizure experience, but overall well-being, to foster empathy and build an environment of trust.
Epileptic by Pierre François-Beauchard, pen name, David B.
David B. is a French comic book artist, who has written an emotionally charged, graphic autobiography about growing up with an older brother, who has epilepsy. Normally, I would avoid a book titled ‘Epileptic’ based on the negative connotations of this word, but David B.’s graphic autobiography will take you on an unforgettable journey, artistically and through an engaging story line.
For the author, what began as a normal childhood, slowly unfolds into a chaotic existence, when his brother Jean-Christophe, develops epilepsy at the age of 11. Told through David B.’s eyes, he encapsulates the reality and disruption epilepsy can have on a family’s life. Each member of the family is dragged along in this journey, as they seek answers to Jean Christophe’s condition. The book depicts this journey through intricate black and white drawings, with the images as chaotic as the disruption in the family life.
David B. reflects his personal anger, feeling abandoned by his older brother, and having part of his childhood stolen from him, creating a rollercoaster of emotions … hope when his brother wasn’t having seizures and defeat when they would recur with a vengeance. When the usual treatments failed to control his brother’s seizures, the family would resort to unconventional treatments such as acupuncturists, exorcisms, magnetic therapists, and macrobiotic communes, all to no avail. Each page is filled with detailed images of snakes, dragons, mystical beasts, and battles, as Jean Christophe’s seizures suck the life out of them.
Can we in fact get on with our lives? But it’s not our choice to make. When the illness took up residence here it didn’t seek our permission. It slumbers inside my brother and upon awakening, it slithers out and insinuates itself in our lives.
He is stalked by the ghosts of his illness. We try to breakout of the isolation of we find ourselves… the only thing inside … is his own self and he’s so very lonely in there.
The Guardian review of Epileptic states “in its clear, sharp, steel-bright cartoon-form, is how, when threatened and promised with the extinction of sensibility, one of our only possible defenses and responses is art”. This book captures it all!
A Mind Unraveled by Kurt Eichenwald
The Mind Unraveled is a memoir of Mr. Eichenwald and his life with the challenges of epilepsy. His story takes us on a journey of the psychosocial impact epilepsy can have upon one’s life, and the frustrations from lack of understanding by many members of the medical community, educational institutions, and society, regarding this condition.
There is a growing recognition of the failures of neurologists in the past to understand the psychosocial difficulties these individuals faced and the role the medical community can play in helping to address them. The Mind Unraveled, reads like a thriller, sometimes frightening, but in the end, it is about how the author rose to the challenges, and conquered traumatic experiences, misunderstandings, and stigma.
Autobiography and A Ray of Darkness by Peggy Eileen Whistler, pen name Margiad Evans
I cannot say enough about the writer, Margiad Evans, an English poet, novelist, and illustrator. She has disproven my belief that written words can never truly capture one’s internal chaos, whether it be related to mental health issues, epilepsy, dementia, or autism. I have previously referred to art as a unique representational language with the ability to better convey one’s subconscious. I no longer hold this bias.
Ms. Evans is a writer with an incredible ability to syntactically create a visual picture. Her prose was described by her niece as, painting with words. I am uncertain whether Ms. Evans appreciated the impact her work would have in regard to its ability to truly capture the seizure experience. Her words coalesce around many of the works of art, Hidden Truths Project, 1:26 The Art of Epilepsy has showcased over the past nine years. Both Ms. Evans’ writings and the many works of the art Hidden Truths Project’s has showcased over the years, support the intersectionality of these creative platforms to reflect from the inside-out the truths of epilepsy.
Language is demanded by epilepsy, as by poetry, that simply does not exist … Language, however, in the hands of a master, suggest that greater, wordless language within from which mental and spiritual discovery issues. It can suggest truths, which are the most certain for being inarticulate.
In Autobiography, Ms. Evans’ words unfold on the page as she becomes one with her surroundings.
One person, one plant, one of anything, lives infinitely….One is everything. One lives in the universe and beyond…Never shall I see nature passing without falling in with its order, myself mixing and coming consciousness in all life. I stand in the door, uncertain if I am inside or out.
It has been suggested that many of the experiences Ms. Evans described were auras, although I suspect, in addition to auras, some represented partial complex or simple partial seizures.
… people spoke to me; but I heard them through a kind of preoccupation. To-day has been like some one else’s dream, now I wonder, if when I am a little older and more homeless in my mind, I shan’t be … not mad, but … open. The spirit calls me too far away, calls to me in a language never invented far beyond the use of ‘merely’. To neither the life of thought nor the life of service do I entirely belong. I still have these stratling moments, memories from the first instant, which bring through my physical body a spiritual awareness indescribable.
Throughout her three books, her writings would transition, from a bright warmness heavily engaged in self and nature (Autobiography), to prose encompassed by a dark cloud (A Ray of Darkness), overwrought with the unknowns of her life and death.
The title, A Ray of Darkness, reflects Ms. Evans deep internal struggles with her imminent death, loss of independence, and perhaps the dulling effects of her medication.
Ray: A portion of a line, which starts at a point and goes off in a particular direction to infinity. The point where the ray starts is called (confusingly) the endpoint. (An apropos word to be used in the title of this book).
Why this ray of darkness on me, while it is day? To teach me death? Compassion? That it has done and for that, if I have lived wrongly, to bring this disease, I would praise the disease, for to understand grief is beyond the understanding and committing of art-even if a person’s art is the only way he can think of God’s self.
Having completed Autobiography and A Ray of Darkness, I eagerly await, my newly released copy of Ms. Evans, unpublished works in, The Nightingale Silenced.
The Nightingale Silenced, a posthumous publication, has been described, as a literary work that reflects Ms. Evans evolving emotions through ongoing seizures, living with a brain tumor, and recently having had a child. It has been said, The Nightingale Silenced, was her final quest in life, to compose yet another book of clues to inform others what individuals with epilepsy experience: an “outside inside story”. Ms. Evans prose has proven to be a tour de force in better understanding the seizure experience and the psychological trauma some individuals with epilepsy experience.
Every time I had an attack-which was often-it was as though a ghost walked through me, chilling with a faint draught every chamber of my body. The scar is not on the brain but on the heart. For disease goes very far towards truth.
Ms. Evans was found to have a gliomatous brain tumor, which eventually would lead to her death in 1958 at 48 years of age.
Mr. James Pratt, Ms. Evans nephew has embarked upon studying her life and writings, sharing the following, which will serve as a final comment: she was a woman very much in control of her brain, and this shows in her art. In A Ray of Darkness, Ms. Evans makes the point that, under an epileptic regime, she is no longer free, but is in chains to her brain.
Dr. Julie Thompson-Dobkin, Founder/President Hidden Truths Project
Artists credits: Laura Mellow Vincent Buchinsky