The Experience of Stroke: Beyond the Blood Clot (NBS Final Paper)

Sara Berman

NBS Senior Seminar

The Experience of Stroke: Beyond the Blood Clot

            Stroke is well defined in the medical lexicon as a disruption of the normal blood flow to a brain region, leading to a loss of neurological function. The common symptoms of a stroke, such as memory loss, speech impairment, and movement problems, occur when neurons die due to the lack of blood reaching them (National Stroke Association). It is important, however, to look beyond the causes or symptoms of stroke, and rather focus on the experience of stroke. What does it feel like to have a stroke? Are patients conscious during a stroke? How do people recover from stroke? Although we consider stroke a scientifically well-studied condition, communicating what it is like to experience a stroke is markedly more contentious.

            Jill Bolte Taylor is a neuroscientist, who at age 37 suffered a stroke in the left hemisphere of her brain from an arteriovenous malformation (Taylor, 2006a). After allowing herself eight years to fully recover, Dr. Taylor wrote a book about her stroke and stroke recovery experience entitled My Stroke of Insight: A Brain Scientist’s Personal Journey. This book spent a number of weeks on the New York Times non-fiction bestseller list and led to Dr. Taylor being named as one TIME’s most 100 influential people of the world in 2008 (Taylor 2006a). Although Dr. Taylor’s book is positively viewed by the media, many college seniors in an advanced neural and behavioral sciences seminar felt that Taylor’s message was too philosophical and personal, not having enough basis in actual, substantiated science.

           In a speech at the Technology, Entertainment and Design (TED) conference of 2008, Dr. Taylor urged audience members to “step to the right of their left brains” in order to find nirvana (TED, 2008). She discussed how as a society, we are too focused on the methodical and rule-based qualities of the left brain. In fact, Taylor describes her “stroke of insight” as her desire to regain the sense of self and the quality of “I am an individual being” provided by the left brain without recovering her previous egotism, argumentative nature, and fear of death, which she believes are also products of the left hemisphere (Taylor, 2006b). Members of the advanced seminar in neural and behavioral science felt that Dr.Taylor’s conviction in the “outdated” conception of the extreme difference between left and right hemispheric asymmetry invalidated much of her message. In the book “Hemispheric asymmetry: what’s right and what’s left,” Joseph B. Hellige, a Professor of Psychology at the University of Southern California, asserts that the dichotomous view of the right brain as creative and the left brain as logical is too extreme. Rather, he claims the brain functions as a unified network to allow for processing, thought, and output. Hellige does not dispute that some hemispheric asymmetries do exist; he discusses the speech localization in Broca’s area and Wernicke’s area, handedness, dominance of the left hemisphere in speech output and understanding of speech, and the dominance of the right hemisphere in rhythm and intonation (Hellige, 2001).

           Taylor’s view about the extremely different functions of the left and right hemispheres is scientifically obsolete (compared to Hellige’s careful analysis) and her push to experience nirvana almost seems religious; the college seniors in the neural and behavioral science seminar grappled with what value, if any, could be taken away from Dr. Jill Bolte Taylor’s experience of stroke. Focusing on the intense hierarchical climb of the workforce and achieving prominence without any regard to the well-being and stress level of oneself or others is definitely something with which our society is excessively occupied and listening to Dr. Taylor could possibly lead to fewer ulcers, and by consequence, happier people. But is this newfound appreciation for the simpler things and the belief in the equality of all people gained by Dr. Taylor during her stroke recovery experience even science at all? I think that although Dr. Taylor is a neuroscientist and her nirvana-seeking views were undoubtedly informed by her experience having and recovering from a stroke, I do not think that they have more or less legitimacy than the newfound beliefs of a racecar driver who recently escaped unharmed from a fiery crash or a diver recovering from a spinal cord injury.

What we can learn from Dr. Taylor’s experience, however, is the methods that may be successful for at least some individuals during recovery from stroke. In Stroke of Insight, Taylor discusses some of the things she needed for recovery. Some examples Taylor discusses (Taylor, 2006b):

1.              I needed the people around me to believe in the plasticity of my brain and its ability to grow, learn, and recover

2.              My brain needed to be protected, and isolated from obnoxious sensory stimulation, which it perceived as noise.

3.              It was essential that we challenge my brain systems immediately.

4.              I needed people to offer me only multiple-choice questions and never ask me Yes/No questions.

The main theme that can be gleaned from these recovery tips are that Jill Bolte Taylor did not want to be viewed as a vegetable without a possibility for recovery; rather, she needed to be stimulated gently and appropriately to allow her brain to form new connections to replace those that were damaged by the stroke. While some members of the seminar, many of whom have been conducting research grounded only in the scientific method and not in subjective experience for senior thesis projects, questioned the validity of tips that had no basis whatsoever in the scientific method, others felt these suggestions would be valuable and helpful to future sufferers of stroke and brain injury. This debate brings up an important issue in neuroscience today- given that many neuroscience conditions, including stroke, are rooted in subjective experience, is there a place for the subjective experience in treating these conditions/illnesses? Many of the suggestions by Dr. Taylor, detailed above, would not be something that could be obtained from a controlled scientific study. Even if someone could design a study to address the value of addressing stroke victims with multiple choice as opposed to yes/no questions, the study might not get funded in favor of flashier, more hard-science research. And if the study did get funded but did not have results with the appropriate p values or significance, that could be because of the irreducible subjectivity of the stroke experience. Although the multiple choice question “therapy” may not work for the majority of people, if Dr. Taylor’s non-scientific method based suggestions happen to help a few stroke sufferers, I believe that this makes at least entertaining the suggestions worthwhile.

            One of the other main components of My Stroke of Insight is the section in which Dr. Taylor details what it is like to actually experience a stroke. In describing her right-sided paralysis Dr. Taylor writes,

“When my right arm became paralyzed, I felt the life force inside the limb explode. When it dropped dead against my body, it clubbed my torso. It was the strangest sensation. I felt as if my arm had been guillotined off. I understood neuroanatomically that my motor cortex had been affected and I was fortunate that within a few minutes, the deadness of my right arm subtly abated…(Taylor, 2006b)”

Dr. Taylor’s training as a neuroscientist undoubtedly informed her stroke experience. While other individuals suffering from a stroke will recognize the paralysis, they might not know that this is due to interruption of blood flow to the motor cortex. Consequently, Taylor’s account informs doctors and researchers about what it is actually like to have a stroke, but from a scientist’s educated perspective. Even though her reports have not been repeated by other individuals (as supposedly all good and useful scientific results are), they still provide interesting and useful information about the self-awareness of loss of function during stroke, but the extreme difficulty in reaching out for her help. For example, when Taylor first attempted to call for help, she found that she could not remember the phone number for her work. Even when she slowly began to recall the digits, she found that even though she knew the phone number contained a “2,” she could not recall what the digit “2” actually looked like. Furthermore, Taylor was unable to remember what digits she had dialed and which she had not; in order to successfully dial, she had to press the appropriate digit and then write down what number she had just pressed (Taylor, 2006b). Perhaps doctors who treat stroke victims will now better understand and be more empathetic to the fear patients undoubtedly experience before they are able to get help or reach the hospital.

            Many students in the advanced seminar took issue with how Taylor communicated her experience in My Stroke of Insight and whether her career as a neuroscientist gave her work an undeserved legitimacy. This debate forced me to analyze the responsibility we have as scientists to communicate our findings to the public and what is the best way to do so. Oftentimes when science is reported in a medium accessible to the lay public (even a reputable one such as the New York Times), the details are left behind and only the big picture message is reported. This might be the only way in which the lay public will understand the scientific message and the only way that they would be even interested in reading or learning about the science in the first place (and can we realistically expect the lay public to be concerned whether Wistar rats of or Brown rats were used as the model organism of choice?). The troubling issue, however, is when the science gets irreparably distorted and an incorrect message is sent. Although this happened to a certain degree in My Stroke of Insight and Taylor’s speech at the TED conference, most notably with the overemphasis of the distinction between the left and right hemispheres, this does in no way negate Taylor’s influence. Her method of communicating to the lay public has been markedly successful in fact, evidenced by the book’s tenure on best-seller lists and widespread critical acclaim. The New England Journal of Medicine, a peer-reviewed scientific journal, writes about Taylor’s account,

“This book is a valuable addition to the narratives of stroke…to those in medical humanities programs, as well as to students and professionals in the many disciplines that are involved in the treatment of stroke. (in Taylor, 2006b)”

This statement by the NEJM means that at least tacitly, the journal recognizes the value of subjectivity in medicine. It is likely that the subjectivity and personal nature of My Stroke of Insight are what enticed many individuals, many of whom previously without a strong background or even interest in neuroscience, to read Taylor’s work and learn about stroke. Taylor’s book discusses many warning signs for stroke and offers information on resources; this information likely needed to be combined with Taylor’s personal account of stroke and urgings “to step to the right of our left brain” in order to be communicated effectively, as most people would not pick up a pamphlet on stroke warning signs as willingly as they would pick up My Stroke of Insight.

            Dr. Jill Bolte Taylor’s book and speech at the TED conference cause us to question both the role of the personal experience in the treatment of illnesses and the responsibility of scientists to communicate their findings to the community. We are forced to contend with both our intense attraction to the scientific method and our realization of the irreducible subjectivity of neuroscience.

Selected References

1. National Stroke Association (2009). What is stroke? Retrieved from www.stroke.org.
2. Taylor, J.B. (2006a). About Dr. Jill. Retrieved from: http://drjilltaylor.com/about.html
3. Taylor, J.B. (2006b). My Stroke of Insight. New York: Plume.
4. Hellige, J.B. (2001). Hemispheric Asymmetry: What’s right and what’s left. Cambridge: Harvard University Press.
5. TED, Ideas Worth Spreading. (2008). Jill Bolte Taylor’s Stroke of Insight. Retrieved from: http://www.ted.com/talks/jill_bolte_taylor_s_powerful_stroke_of_insight.html