National Stroke Association: www.stroke.org
American Stroke Association: www.strokeassociation.org
Heart and Stroke Foundation: www.heartandstroke.ca/stroke/signs-of-stroke
If any of the F-A-S-T symptoms appear: FACIAL drooping; ARM weakness; SPEECH difficulty -- that means it is TIME to dial 9-1-1 and go directly to hospital.
Time is your enemy!
Once Upon a Time an Author Had a Stroke
Q & A with IPPY Award-winning Author Ron Smith
“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…The book is completed, even though my right hand and arm, foot and leg still suffer from the effects of spasticity.”
In his gripping memoir, author and editor Ron Smith gives readers a glimpse of what it is like "living inside a stroke," and the arduous journey to redefine oneself after experiencing a debilitating stroke.
Smith’s story begins on November 19, 2012. After giving a blow-by-blow account of the events leading up to his ischemic stroke—or as he terms it, “brain attack,” what stands out in Smith’s memory is a cacophony of sounds, which only create an odd twist to his overall sensation of being “unplugged” (disconnected) from his surroundings. In those first hours and days all he hungers for is “silence and sleep.”
During Smith’s time in the hospital he mentions his frustration to communicate: he clearly understands what he wants to say, but what comes out is garbled. In an interview with Smith I posed a couple of related questions: whether or not he had ever discussed with medical professionals why they haven’t attempted other forms of communication (i.e., emoticons, sign language, word imaging) with stroke patients, and their response—if any.
Ron Smith: Aphasia, as you probably know, is a common and complex consequence of stroke. Initially I had some difficulty communicating and reading but I don’t think I had one of the many forms of aphasia, even though my stroke was to the left side of my brain. My right side was paralyzed and I suspect the paralysis had more to do with my problems communicating and reading than an assault on my language centers. My ability to communicate returned relatively quickly when I compare my experience to serious aphasia victims. In this regard I was fortunate. I think the medical staff realized fairly quickly that I could understand them; my frustration was trying to make them understand me. My speech was slurred and there were words and objects I couldn’t access or didn’t know how to use. But those came back to me comparatively quickly and I think the medical staff could see the improvements. It was my physical recovery that took time. But, in answer to your question, I did see speech therapists using other forms of communication. I was advised to use music. I mention in my book a man using Morse Code. I believe stroke patients understand a lot more than therapists realize and they need to find the communication form, be it pictures, sign language, music, math, symbols, that will help them make contact.
I also asked what forms of communication he would recommend to the medical community.
RS: I see I’ve started to answer this question above. I think we need to place much more importance on anecdotal accounts, in other words, the stroke survivor’s story or stories, than we do. If we collect enough anecdotal information and view it as more than a ‘one-off’ story, I think we would start to see patterns or common images and experiences shared by many stroke survivors. We need to broaden what we consider reliable evidence of what is happening in the brains of stroke survivors. Our treatment protocols are far too rigid; too wrapped up in the ‘scientific method’. Our treatments do not have to be limited to evidence based, controlled experiments. Stories, if we collect and collate enough of them, might provide reliable information on which to base therapy; that is, use neuropsychiatry more. We can do what I’m suggesting with computers. Most stroke patients receive physiotherapy but not brain therapy! Most stroke survivors don’t talk about their stroke experience for fear of being thought crazy; for fear of the stigma attached to all forms of brain damage. I think all the arts, games (verbal and math), movement (dance) should be a part of the communication arsenal. We all know Bauby’s story! Or should! (Bauby’s story is The Diving Bell and the Butterfly, the book and film about “locked-in syndrome, in which the patientis aware but cannot move or communicate verbally due to complete paralysis of all voluntary muscles except for vertical eye movements and blinking. – Ed.)
Smith makes an alarming comment in chapter 7: “In my experience and from what I’ve read, stroke survivors are often shunted aside, because no one knows quite what to do with them. Brain ‘insult’ is still a huge medical mystery.” Certain that improvements have been made since the completion of his book, I asked whether or not he could confirm this. If the answer was no, I wondered what suggestions he could offer to hospitals that would remove or at least lessen stroke survivor’s dismal surroundings.
RS: Too often stroke patients are sent to a room at the end of an acute ward hall, essentially outcast and made to feel like hopeless cases. This still happens, although less frequently than it used to. But it still happens because a lot of hospitals are simply too small to have a dedicated stroke ward. So in part, having dedicated hospitals is solving this problem. In other words, you might bypass two or three hospitals to get to one that actually knows how and is equipped to “treat” stroke. This is an important evolution. Every hospital cannot be expected to deal with every medical emergency, especially when the problem is so complex and treatment so urgent. Those first hours after a stroke are vital.
Amid the chaos—both surrounding him and within his affected brain, Smith appears to have one saving grace that gets him through his ordeals in the hospital: an incredible ability to recall memories from the past—AND in great detail, to boot! Irony steps in as Smith’s “disengagement intensifies” (void of time, place, and especially self) concurrent to the rise of more distant memories. It is at this point when his family steps in to pull him back “to the familiar.”
From his book, Smith states:
“In concert with all the medications, recovery strategies and therapies used in the treatment of stroke survivors, the most powerful elixir, the most effective antidote to the ravages of a stroke,…is love. Love. Heavy doses of love and tenderness. And humour. It’s that simple.”
His comment begs yet another question: if love, tenderness, and humor play a vital part in the healing process for stroke survivors, then what should hospitals incorporate to ensure that these qualities become a part of the recovery plan?
RS: Healing needs to be far more patient focused. Inclusion is critical to recovery. I think most stroke survivors feel like they have dropped off the edge of the world. They no longer feel like they belong, at least I didn’t. Often medical people spoke as if I weren’t present; and I was! Fortunately my family was incredibly supportive. They did not talk around me, nor did they allow others to do so, in particular those who were caring for me. I think it’s important that stroke patients not hear any dire predictions, especially in the early going. And some incidents are comical ― don’t be afraid to laugh. I guess I’m suggesting that caregivers need to act natural and trust their instincts. Use common sense; don’t be hamstrung by some uncompromising rulebook. Too often stroke survivors feel abandoned. Don’t dismiss what you don’t understand; what a patient sees or comprehends may be the next exciting metaphor that connects two hitherto unconnected neurons.
Another fascinating aspect of Smith’s stroke mentioned earlier—and one that is NOT often a frequent side effect of stroke—is long-term memory. A true storyteller, Smith weaves in comedic moments amid devastating circumstances as he fills page upon delightful page with minute details from a trip that he took over fifty years ago to France and Spain, as well as vivid (forgotten) memories of his childhood that go back to when he was a toddler. That was then, but what about now? Four years have passed since his stroke. I was curious whether or not he still experiences detailed long-term memories, and if not, when did they stop?
RS: These early memories, from around the age of eleven months, were perhaps the most surprising and special side effect of my stroke. Brain scientists have told me they were impossible to have because the brain isn’t well enough developed to store them. All I can say is, they are wrong; we simply don’t know how to access or measure them. I no longer experience these early memories. I stopped having them three to four months after my stroke. My brain, at least in this respect, has returned to normal. I have relearned how to forget. My theory is that for a short time the “regulator” in my brain stopped working; was knocked out. I was flooded with recollections, which to be honest, were often overwhelming, and sometimes frightening.
In due time, Smith learns that his abilities to swallow and walk with help are two pertinent signs of a possible 90% recovery. He is then transferred from Acute Care to the Rehab unit. But Smith’s happiness is brief since recovery is a slow process. Feeling imprisoned within a frenzied state of confusion that includes loss of self (both physically and cognitively), a multitude of emotions, and erratic yet painful muscle spasms, Smith becomes depressed.
One could only imagine the difficultly of trying to stir up hope in the midst of hopelessness. On top of that, observing other stroke survivors (and how their strokes affected them) had to provide both a sense of hope as well as hopelessness. Based on Smith’s observations during his hospital stay, I raised new questions: which situations appeared utterly hopeless and which offered hope?
RS: During my hospital stay I wanted to believe that no situation was utterly hopeless. Perhaps I needed to believe that was the case to protect myself. This is such a difficult question because so many factors are involved. I think that lack of support from family and friends can be incredibly hurtful and harmful. Every stroke survivor needs recognition, affirmation, reassurance and massive injections of encouragement. When any one of these was lacking, I worried for my fellow patient. Depression sets in quickly, for many reasons; when I saw that taking hold of someone I despaired. Because you have lost a part of yourself, you aren’t quite certain who you are or if you can rediscover yourself. You start to slip away. You can see the loss in someone’s eyes. That’s when I worried. I looked for positive reinforcement everywhere and from everyone. I became a bit of a recovery zealot. Since I finished the book, I met a stroke survivor who was “locked-in” for two years and then spent ten more years regaining some movement and speech. His story is inspiring! Never give up, his story insists.
After two or three days lingering in “the depths of a dark hole,” Smith determines to turn his attitude around by meditating daily on “generating positive thoughts towards” paralyzed body parts, especially during his “mirror therapy." A few weeks later, a miracle occurs when his paralyzed right arm suddenly mimics the movements in his unaffected left arm. For the first time, Smith experiences a ray of hope.
Wow! What a turning point in Smith’s recovery! After reading his experience, I had to ask more about the meditation he chose to embrace, wanting to know if he could have achieved movement from his affected arm without the meditation.
RS: No, I think meditation and memory were essential to my recovery. Both helped to focus my mind. Memory led me back to myself while meditation told me that I was still a thinking human being. A stroke is accompanied by huge doubts and meditation fed me increasing doses of reassurance. Being able to travel to different parts of my body through meditation put me back in “touch” with my physical being. I also realized that my mind and body are intricately connected and that one can help the other in the recovery process. Mirror therapy, I believe, achieved a similar goal.
Smith has a purpose for capturing all of the above-mentioned moments. With all the advances in neuroscience, such as brain plasticity (neuroplasticity) and endovascular therapy, to this day the scientific community knows very little about thoughts, memories, and dreams and “how those might have been affected by a stroke.” That said, Smith wonders just what could have been accomplished if doctors had known what was going on inside his head.
Nonetheless, shortly after Smith’s miraculous shift in recovery, he is granted an opportunity to go home. The “visit” goes so well that his return to the hospital is just to retrieve the last of his possessions. Once home, Smith is quick to notice that his senses seem to be amplified—obviously another fascinating result of his stroke. I wondered how long this lasted and posed the question to Smith.
RS: My amplified or intensified senses lasted for close to a year and were a definite highlight of my stroke experience. I believe most stroke survivor’s senses become amplified or altered. Yet they are reluctant to talk about this for fear of being censored and called mad or crazy. These experiences can silence stroke survivors because they fall outside mainstream thinking. A Buddhist monk, for example, recounting such a story is respected, while someone who has suffered brain damage telling such a story is likely to be considered unstable or demented. So much depends on context and expectations; for the stroke survivor, those have changed.
Reaching out to other stroke survivors seems to be a natural next step in the recovery journey. I asked Smith if he’s given any thought to starting (or joining, if such exists) a stroke survivors’ action group—one that promotes visiting stroke survivors, both in acute care and rehab. This was his response:
RS: Shortly after I was released from hospital I joined a Stroke Recovery Group, which I attended for about half a year. I then hired a trainer with whom I worked out for two years while I wrote my book. Since the book was released I have talked to many stroke groups, worked with the Heart and Stroke Foundation in Canada, and talked to therapists in hospitals in Canada and the States. I feel very strongly that meeting and sharing stroke stories with other stroke survivors is a valuable therapy for all of us. We need to tell our stories. Most people don’t know what a stroke is; have no idea how devastating the outcomes of a stroke can be, nor do they know that stroke is the number one disabler of people worldwide. Five years after my stroke, I still walk with a cane and have limited use of my right side.
Since his return home, Smith has undergone various therapies including acupuncture, massage therapy and “forest bathing” (thepractice of taking a short, leisurely visit to a forest for health benefits). Although Smith has improved significantly, the journey to recovery is a slow process. That said, he continues therapy treatments of one form or other, and still pecks one letter at a time on the computer keyboard. Obviously, pecking has not squashed his literary juices since he has writing plans in the works:
RS: In 2007 I published an illustrated children’s book entitled Elf the Eagle, a book that was short-listed for the BC Book Prizes and the Saskatchewan Young Readers Award, a prize selected and awarded by kids themselves. My book placed second. Elf is a young bald eagle that is afraid of heights and the story follows him through his first thirteen weeks, until he fledges. I’m now half way through a sequel entitled Elf’s Family Tree. I’ve also started researching a novel set on the west coast in the 60s. While I have no plans to write further on my stroke experience, my wife has been keeping a blog on our travels and encounters with other stroke survivors: www.defiantmindjournal.blogspot.com. I would like to see her couple this journal with an essay on the role of caregivers. Both of us plan to continue to work with stroke organizations and survivors. We want others to hear our message: Recovery never ends.
In closing, Smith affirms why he went to great lengths to write his memoir:
"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 [from A.A. Milne's The World of Pooh] (that would be me and my fellow stroke survivors) truly has brain."