This is the question that plagues Ron Smith as he emerges from the carpet bombing of his brain. The Defiant Mind: Living Inside a Stroke is a first-person account of a massive ischemic stroke to the brain stem. Smith takes the reader inside the experience and shows how
recuperation happens, the challenges of communication, the barriers to treatment, the frustrations of being misunderstood and written-off, the role of memory in recovering identity, the power of continuing therapy, and the passionate will to live.Full of arresting anecdote, enlivened by a vivid and vigorous style, the book tells of successes and failures and draws on the newest research in stroke treatment.
This is a necessary book for stroke survivors still dealing with the effects of their trauma and for care-givers, vital to the process of recuperation, who feel hampered and harried by concern and confusion. The book is a caring companion, offering support to people navigating the fear and bewilderment that accompanies a stroke. For medical professionals, the book offers insights into the workings of the brain, the power of the brain to heal, critiques of conventional limits imposed on therapy, and suggestions for ways to improve care.
More than an evocative memoir, more than an incomplete history, more than a breathtaking journey out of stroke and back to a literary life, The Defiant Mind is a beautifully written love story; it is a glimpse inside the tender and fulfilling relationship between the author and his wife. Smith makes clear that defiance (with unconditional support) is the first step to making hope a reality.
This is a story about time which affirms life in the face of terror and death. A book for everyone.
“The importance of this superbly written book transcends occupation and knowledge of the disease, and should be read by all. Nearly 25 percent of everyone in Canada will suffer a stroke by the time they reach eighty years old, and almost everyone will be touched by it. This much-needed book fills a void in our literature by expressively taking the reader through the experience of suffering a stroke, which of course includes the physical disability, but also the cognitive, the emotional, and the experiential effects of this disease. The Defiant Mind is a story of survival and the continual path to recovery.
Stroke remains a disease that is misunderstood by most people in our society. The stroke patients that I have interacted with are in need of this type of book to better understand their disease even if their experiences are unique. Furthermore, the general public should welcome this entertaining, emotional and engaging book; it helps us to better understand this disease from the beginning and from the perspective of a patient. Finally, I would highly recommend The Defiant Mind for healthcare professionals and students to better understand the entire scope of this disease and not just the compartmentalized aspects that they are trained to treat, to better understand the variation in care that we provide, and to better understand what it is like to go through our healthcare system.”
— Noreen Kamal PEng, PhD, Alberta Stroke Program (QuICR)
“I thoroughly enjoyed Ron Smith’s book. I couldn’t put it down. Even without a stroke, his book is an amazing, lucid, literate, informative read. And to think he did this after a debilitating stroke leaves me grasping for superlatives.”
— Bruce Hunter, author of In the Bear’s House, Toronto
“In The Defiant Mind recovery is a sort of miracle, the literary enterprise even more so. An outstanding read, it is an extraordinary balancing of the various elements of narrative. The shift between the outside reality and the emotional response to the terrible ordeal of stroke takes place with naturalness and total ease. An analytical, dispassionate mind finds its counterpart in a deeply compassionate spirit, and together they converge in a dominant feeling that is love — for family, humanity at large, nature — a great monument to wholeness.”
— Ada Donati, poet, translator, art critic, Rome, Italy
“I finished reading The Defiant Mind and LOVED IT. Beautifully written by an accomplished writer and now stroke survivor making a clear point that defiance (with unconditional support) is the first step to making hope a reality.”
— Jean Woo, Heart and Stroke Foundation, Research, Ottawa
“The really important feature of Ron Smith’s book is that it emphasizes the effect that stroke has on the whole person. Stroke changes your very essence, changing what you can do, how you think and feel, how you experience the world and who you are. Stroke affects your family who become your caregivers. Stroke affects your community. Because there is a modular functional anatomy of the brain, stroke manifestations can be protean depending upon what part of the brain is affected. Stroke treatment is progressing on all fronts — acute care, prevention and rehabilitation. Much remains to be learned but there is progress and more stroke patients are having better outcomes every year. We are also making progress on the organization of stroke care. In Canada, we are fortunate to have a health system that does, overall and by comparison to the rest of the world, provide very good stroke care.”
— Michael D. Hill, MD MSc FRCPC, Calgary Stroke Program, Dept. Clinical Neurosciences, Hotchkiss Brain Institute, Cumming School of Medicine, University of Calgary
“Brilliant. The Defiant Mind: Living Inside a Stroke has given me a deeper and more human insight into an area that I have always tried to persuade myself I understood. Not only does this memoir illuminate stroke at a personal level, but it also brings clarity to the essence of “health care.” Its insights into the “culture” of our hospitals and services are often awakening and humbling. This book should be required reading for all leaders in health care and for student therapists. The writing is evocative — I felt such sadness when I reached the end of the book. Many experiences that are impossible to imagine if you have not suffered a stroke are brought to life. The description of learning to roll in bed and pull oneself up while managing one’s paralyzed arm and leg is the best I have read. Similarly, when Ron describes trying to put on his shirt and wheel his wheelchair for the first time, I felt panic and discomfort. And I was often overwhelmed by the “vulnerability of disability.” But I was heartened when he “took over” his rehab and became a stronger self-advocate. This is a well-documented account of a stroke experience bundled into a poignant story of life, love, and family.”
— Pam Aikman Ramsay, Provincial Director, Stroke Services BC, Vancouver
“I really enjoyed The Defiant Mind. The book does a remarkable job of drawing attention to the challenges and gaps in the healthcare system while still illuminating the bright spots. It is a clear and eloquent account of a personal stroke story that more than anything else reminds us that behind every stroke is an individual and that every stroke recovery journey is unique.”
— Stephanie Lawrence, Senior Manager, Communications, Heart and Stroke Foundation, Ottawa
“I know this may sound strange, but The Defiant Mind closed a gap for me . . . it allowed me to understand (and in a way come to peace with) my dad’s stroke all these years later. I really enjoyed the book . . . my favourite part was when the author’s granddaughter ‘comes back’ to him. It moved me to see her get closer again, and made me think of when I stopped looking at my dad differently. I don’t know if Ron Smith meant for that to be a tipping point in his recovery for his readers, but it definitely was for me.”
— Elizabeth Takac, Coordinator, Research,
Heart and Stroke Foundation
“Ron Smith has written a wonderful book about surviving a stroke. The Defiant Mind: Living Inside a Stroke is a MUST READ for stroke survivors, their caregivers, as well as a general audience. Every year, strokes permanently disable five million people worldwide; consequently, how to treat stroke survivors has become a fundamental health issue facing us today.
I honestly thought I knew something about stroke before reading this book. I have a doctorate in Neuroscience from the UCLA Brain Research Center and do research on cardiovascular diseases. I also have experience as a caregiver. Several years ago, when my parents were visiting us, my mother suffered a massive stroke at our house two days after Christmas. Despite her age, she was a very healthy individual with normal blood pressure who kept fit by playing tennis daily. The stroke was completely unexpected and devastating for our family. Although she was hospitalized within an hour of the stroke, she died about one month later. I never gained much insight into her suffering because of her severely debilitated state. Ron’s book really opened my eyes.
I started reading The Defiant Mind thinking it would confirm what I already knew. Nothing could have been further from the truth. We tend to judge a stroke survivor’s progress by external factors, such as the gains they make in strength, or their improved ability to walk and speak. But that is only a small part of the story. Here, we have a first-hand account of the perceived inner workings of a brain scrambled by a stroke, trying to make sense of the world around it. The subtle things that those of us on the outside normally miss or think irrelevant, Ron shows to be absolutely crucial.
Ron’s account of his recovery is fascinating, frustrating and powerful. How his mind goes from being decimated by oxygen deprivation during the stroke to the processes involved in trying to make new neuronal connections to understand the world is illuminating, and told from a perspective that most of us have never imagined. The resurfacing of archival memories in the author’s brain from forty to fifty years ago as if they had happened yesterday is truly insightful to me, not only as a scientist but as someone who has cared for a loved one who has experienced a stroke. The frustration of not being able to communicate with family and friends, the challenges the survivor faces in the often long recovery process and the determination it takes to make a strong recovery are compelling. A captivating read, this book helps us better understand stroke from the INSIDE. One of the ironies of my writing about The Defiant Mind is that I am about to take my son to the hospital to visit a thirty-five-year-old co-worker of his who suffered a stroke on the job last week. I’m having my son read Ron Smith’s book as a way to understand what she is going through and to help him see how he can assist in her recovery.”
— Glen Tibbits, PhD, Professor and Chair, Biomedical Physiology and Kinesiology, SFU; Canada Research Chair in Molecular Cardiac Physiology; Vice Chair of the Scientific Review Committee, Heart and Stroke Foundation of Canada
Every forty seconds someone
In North America suffers a stroke.
Every four minutes someone in
North America dies from a stroke.
Stroke is the leading cause of disability
in North America.
The Defiant Mind: Living Inside a Stroke took me over a year and a half to write, pecking one letter at a time with the index finger on my left hand. Eventually I learned to use my thumb to hit the space bar.
This process was by no means as slow as signalling each letter of each word by blinking one eye, as was Jean-Dominique Bauby’s method of dictation when he composed his exquisite The Diving-Bell and the Butterfly. Yet, compared to my typing eighty words a minute prior to my stroke, I lumbered along writing this book, like the tortoise in Aesop’s fable. I was determined to win the race, but my lone finger had difficulty keeping up with the pace of my thoughts. Those thoughts ran ahead like the hare, who stopped, every so often, to nap.
Meanwhile, my finger poked and plodded along, and I finally crossed the finish line, my thoughts and finger arriving at pretty much the same time.
The book is completed, even though my right hand and arm, foot and leg still suffer from the effects of spasticity. And even though, as far as I know, I’ve emerged a somewhat altered person. Later, much later in my recovery, an internist told me that the difference between a heart attack and a stroke is that after a heart attack you at least know who you are.
My story begins with the first hint that something unusual was happening to me, on a day that began like any other and ended with my body and brain suffering a frontal assault of such magnitude that I was left severely disabled. The actual attack lasted for several hours, perhaps days. No one knew for sure how long my brain was under siege or how many brain cells had been destroyed. The initial CT scan taken the evening I ended up in hospital showed nothing, but a few days later, after another image was taken, the damage was writ large for everyone to see. I now had the road map for the attack on
my brain stem, but no one seemed able or willing to explain why it had happened.
As is the case with all strokes, mine was haphazard and unique. Perhaps the most frightening thing for me was that I was rapidly losing contact with the world I knew. Suddenly nothing made sense anymore. On the one hand, I wondered why all the fuss; on the other, I knew I needed help.
But what would help?
To exercise my brain and in the hope of finding out what had happened to me, I spent a considerable part of the second half of my first year of rehab reading books about the brain and a few about brain attacks suffered by other stroke survivors, including books by Jill Bolte Taylor, Bonnie Sherr Kline, Robert McCrum, as well as Jean- Dominique Bauby. Each one gave a disturbing if not chilling account of their stroke. They talked about the loss of cognitive powers, about being “locked in” (like Stephen Hawking with his ALS), about being handicapped, about the stress put on relationships, especially family and marriage. And about the triumph of love and the power of the “will to be” as keys to the effectiveness of the lengthy rehabilitation process.
Their stories helped to show me some ways to recovery, and yet something important seemed to be missing from their accounts. No one discussed the role of mind and memory in reasserting a sense of self. Despite the huge pummelling I had taken, I began to realize that my fragments of memory confirmed not only “who I was” but gave me the “will to be.”
Another thing, their strokes were hemorrhagic — a bleed in the brain — the rarest form of stroke, while mine was ischemic — a clot or blockage in the brain — which is the most common type of stroke, accounting for approximately 82 to 87 percent of strokes.
One key point to know when reading this account: In the early days after my stroke, I lost my ability to forget. All the protective defences I had learned since childhood were destroyed. I was bombarded by the pandemonium of sounds, images, memories and emotions that flood our brains at every moment of our daily lives. At first I didn’t know how to cope with this explosion of sensations and thoughts, but slowly I learned to live again through my memories. As I lay in my hospital bed, memory became my salvation. As the world about me became more turbulent, I drew more heavily on my past. My hunger pains in the hospital triggered memories of nearly starving in my youth and caused me to relive a trip I took to Spain in the winter of 1964/1965. By recalling how I dealt with events that had dislocated me then — allowing me to survive — I found a way of relocating myself in the “now” and reclaiming who I was.
My stroke account moves in and out of past and present — between a past in which I lived amongst people inhabiting far-away lands who spoke in foreign tongues, and a present in which I lived amongst people who occupied a world where I now felt like a foreigner and with whom I struggled to communicate with my new thick and unresponsive tongue. The travel memories in my book, which serve as a metaphor for the recovery of my self, recount the ways I found of saying, “I am alive and I am still thinking.”
When I was able to stay awake, my brain was hyperactive, flooded with ideas and impressions, to the point where I began to feel overwhelmed. When I was on the edge of sleep and feeling under siege, I asked myself:
How am I to avoid being overwhelmed?
How might I find my way back?
How might I rediscover my old self?
From my perspective, I ended up living inside the stroke. I was no longer in the everyday walkabout world as a functioning member of society. In the following pages I have attempted to provide a day-byday account of what was happening to me, and what I learned that might help in future therapeutic practice. I describe the process by which my memories helped me to reassert who I was and gave me the will to continue. At times the endeavor was comical, at times fiercely depersonalizing.
I soon understood that I could either give in to the despair that haunts many stroke patients or figure out a way to rebuild all those bridges in the brain that define who I am. I knew I had to escape the bottle of voices and ideas that threatened to overwhelm me. I needed to rediscover the regulator or “governor” that keeps the traffic in the brain organized and at speed. Otherwise chaos would set in.
Since my stroke, as part of my self-directed therapy, I have read widely about brain research. The ability of the brain to recreate or modify its structure is the foundation of the important and exciting work now being done on what is referred to as brain plasticity. Therein, I believe, lies the promise of reconnecting and reformatting — in essence healing — the traumatized brain.
Months into recovery when I was doing research on strokes and was particularly interested in researching the brain, I dipped into A.A. Milne’s The World of Pooh, which seemed to sum up perfectly what a stroke entailed for the survivor and what it meant to many of the people a stroke survivor was likely to meet. A common response to someone who has suffered a stroke is that they no longer have a functioning brain and, if they do, it’s lost and they’re elsewhere. I suddenly found myself being treated like a curiosity at best, as an “untouchable” at worst. I felt I needed to keep saying, “I’m not a stranger, and I’m not a cabbage, I have eyes and, like Rabbit, I have brain.”
My recovery continues, and I’m optimistic that one day I will regain at least 80 percent of my previous mobility. A whole community of people has contributed to my recovery: friends, neighbours, family, nurses, doctors, therapists.
Over the course of two years I learned that many health professionals make a puzzling and disturbing separation between the body and the brain. While therapists and doctors helped with my physical recovery, I learned that the restoration of my cognitive “being” was up to me. No one seemed interested in what was happening inside my brain. No one seemed interested in my “subjective” thoughts — experiences which J. Allan Hobson (who himself suffered a stroke fourteen years ago and is professor emeritus of the Harvard Medical School) argues should be central to stroke research and understanding.
Each stroke event is unique because each brain is unique. This is the mantra which is continually repeated by health professionals, but is too often ignored in treatment. My book advocates for a greater focus on the brain in stroke assessment and recovery, and for placing a much greater importance on the subjective, anecdotal accounts of stroke survivors.
“Listen,” each stroke survivor should demand, “I need to be heard.”
At its heart, The Defiant Mind: Living Inside a Stroke is a book about the wonder that is the human brain, both before it has been damaged and after, when it’s struggling to pick up the pieces and make some sense of the muddle it has become — the jigsaw puzzle of scattered recollections, unidentifiable objects, inexplicable emotions, impenetrable ideas. Unfortunately, as our population ages, more and more people are going to experience strokes, although it is important to note that strokes hit at any age, from infants to teenagers to young and middle-aged adults. Disturbingly, the Heart and Stroke Foundation tells us, “. . . there has been an increase in strokes among people under sixty-five and an increase in all stroke risk factors for younger adults.”
At a time when the medical profession is bracing itself for an assault on the health system, health care professionals are actively looking for ways to make their interventions more patient focused. For this reason, months after I suffered my stroke, I decided I would write the story of my brain attack, giving an inside-out view of stroke and, more importantly, showing everyone that recovery is possible.
Since many stroke victims cannot speak for themselves, my goal has been to write a book that provides a voice for victims, and gives insight and encouragement to families, friends, caregivers, medical professionals and the general reader by demonstrating that rabbit (that would be me and my fellow stroke survivors) truly has brain.
Published by Ronsdale Press
Ron Smith, born and raised in Vancouver, is the author and editor of several books. For close to forty years he taught at universities in Canada, Italy, the States and the UK. In 2002 he received an honorary doctorate from the University of British Columbia and in 2005 he was the inaugural Fulbright Chair in Creative Writing at Arizona State University. In 2011 he was awarded the Gray Campbell Award for distinguished service to the BC publishing industry where he has played an essential role in the growth of literary, historical and public policy publishing. He lives with his wife, Patricia Jean Smith, also a writer, in Nanoose Bay on Vancouver Island.
OTHER BOOKS BY
A Buddha Named Baudelaire (1988)
Enchantment and Other Demons (1995)
The Last Time We Talked (1996)
What Men Know About Women (1999)
Arabesque e altre poesie
(Italian translation by Ada Donati, 2002)
Elf the Eagle (2007)
Kid Dynamite: The Gerry James Story (2011)