A Blow to the Brain
Jill Bolte Taylor
She woke up with a throbbing pain. Within a few minutes, her orderly world began to unravel.
ON THE MORNING OF DECEMBER 10, 1996, I awoke with a pulsing pain behind my left eye. I got up to begin my morning routine and jumped onto my cardio-glider. The exercise, I thought, would get my blood flowing and banish the throbbing inside my head. While I exercised, however, the pain became more intense. Within a few moments I started to feel very peculiar–confused, yet clearheaded and alert.
When I got off the machine, I noticed that I was slightly off balance and feeling strangely detached from my body. I climbed into the shower, my movements slowed and deliberate, almost jerky. When I held my hands up in front of my face and wiggled my fingers, I felt as though my consciousness was suspended somewhere between normal reality and some esoteric space. I felt light, almost ethereal. The running water of the shower felt like little bullets spattering into my flesh, and my chest started to tingle.
At this point, I knew something was very wrong with my brain. I dimmed the lights, because they made the throbbing behind my left eye worse. Time seemed to stand still. The background sounds of the world outside faded away into silence, and that silence grew louder and louder. I was disturbingly aware that the intricate networks that operate the different functions of my mind were shutting down.
I tried to visualize myself driving to work, and in the next instant my right arm went totally dead. I couldn’t feel it or move it. In that moment I knew I was having a stroke. I was 37 years old and, testifying to the impact of my scientific training, my next thought was “Wow, this is so cool!” I am a trained neuroanatomist, and this was an opportunity for me to study my brain–from the inside out.
I witnessed the breakdown of my higher cognitive skills, the skills that make orderly sequential connections–A is followed by B, B is followed by C. I could no longer integrate and associate my thoughts with the incoming sensory information. I lost all comprehension of mathematics–even the concept of dialing 911. Numbers simply didn’t exist for me anymore. I knew I was in grave danger, but I felt tired and confused, and I longed to lie down in my warm, cradling waterbed. Although I felt no sense of urgency, I understood that the prognosis of stroke is often determined by how quickly a patient gets to the hospital. To save my life, I had to make a plan and then consciously hold it in my memory long enough to execute it. But I kept forgetting what it was I was trying to do.
After minutes of effort, I dialed the phone number of the Harvard Brain Bank at McLean Hospital, where I worked. I tried to ask for help, but although I could hear my voice speaking clearly within my mind, my throat wouldn’t form the words. The sounds I made began with a gasp … then a grunt … then a longer grunt. It was sort of like priming a pump. Eventually I blurted something out, but it was unintelligible. I heard my colleague speaking, and I knew that I knew what was being said, but I just couldn’t grasp the meaning. Fortunately, he sensed the danger of my condition and with soothing tones he assured me that he would get me help.
While I waited, I felt desperate to contact my doctor. Even in this debilitated state, I was terrified that my HMO would not cover the costs if I was brought to the “wrong” emergency center. But the task was daunting. Imagine holding a three-inch stack of business cards and seeing in your mind’s eye your doctor’s card, with its red Harvard crest at the top. Imagine realizing that you have absolutely no idea if this is your doctor’s card, because your brain is no longer capable of distinguishing colors, letters, or numbers from the card’s background. It took more than 45 minutes of intermittent waves of clarity for me to identify the right card.
When my colleague arrived, I handed him my doctor’s card. I felt my inner self shifting from an anxious alertness to a peaceful acceptance as my mental deterioration continued. Eventually, I welcomed the silence. I felt serene.
At the hospital, I was placed in a CT scanner. The resulting images revealed that I was indeed having a stroke, with severe bleeding in my left temporal lobe. I vaguely remember hearing the word stroke, and it brought me some sort of satisfaction that I had been correct in my diagnosis. But I was past the point of caring. My brain had shut down to a level of semiconsciousness, and I surrendered to the care of others. Later I learned that 10 percent of people who experience this kind of stroke die immediately. Another 50 percent remain in a vegetative state.
Most strokes are caused when a blood clot lodges in an artery that is supplying life-giving oxygen-rich blood to the brain. The artery that is blocked determines which cells will be starved and die. For some people there is extensive neurological destruction, while for others there is minimal effect. My stroke, however, was not caused by a clot but by an arteriovenous malformation (AVM). Normally, capillary networks–fine-mesh structures of tiny blood vessels–function as a buffer zone between sturdy arteries, in which blood flows forcefully, and thin-walled veins, which return blood to the heart and lungs. With an AVM, there is a shortcut between arteries and veins, and a low-pressure vein is directly hooked up to a high-pressure artery. Some people have the condition and never have symptoms. But in others the direct connection between the artery and the vein becomes so weak that the connection bursts.
In my case, the hemorrhage occurred over a fold in the left hemisphere of my brain: the superior temporal gyrus. There are two major language centers in the left hemisphere: Broca’s area, which is involved in speech production, and Wernicke’s area, involved in language comprehension. The bleeding in my brain placed pressure on the nerve fibers running between these two language centers, blocking my ability to speak or understand spoken language. The most lasting injury occurred in a nearby region that allows for the performance of both simple and complex mathematical calculations.
Later in the afternoon, when I regained full consciousness, I was actually quite surprised to be alive. I thought I had completely surrendered to my death. Instead I was awake, and to my dismay I was completely mentally disabled. I had stepped outside the “normal” rhythm of our society, and I experienced the isolation and other facets of mental illness that I had spent much of my professional life describing to others.
My interest in the human brain began when I was very young. I wanted to know why one of my brothers–18 months older than I–interpreted experiences differently from the way I did. As a sister and later as a scientist, I wanted to understand why I could tailor my dreams to fit into a reality that allowed them to come true, and why my brother lived in a tormenting world of delusion. When I was 24, I entered a doctoral program in neuroanatomy. The next year, my brother was diagnosed with chronic schizophrenia.
It is truly a marvel of the human brain that we can interpret a vast array of sensations from the external world and create a perception of reality that we can then communicate and share with others. But people with schizophrenia experience a thought disorder in which their version of reality is unique to themselves. In my brother’s mind, he is Prince Michael the White Horseman. He expects to be martyred and then resurrected in an androgynous form, when he will reign as the “bride of Christ” in Heaven. He spends hours every day writing what he genuinely believes to be “audibles” from God. Although medications help my brother function and be less confused, his delusional thinking and hallucinations persist.
Seven years after my brother’s diagnosis, I received my Ph.D. and began working in brain research at Harvard Medical School. Eventually I specialized in the post-mortem investigation of the human brain, with a focus on the brains of individuals diagnosed with schizophrenia. I wanted to help identify the underlying biological mechanisms for hallucination and delusion. However, because there is a long-term shortage of brain specimens donated by individuals with a psychiatric disorder, I began working as the brain bank’s national spokesperson for the mentally ill. Billed as the Singin’ Scientist, I travelled extensively, educating families of the National Alliance for the Mentally Ill about the beauty, fragility, and resilience of the human brain, as well as the scientific value of brain donation for research. In these informal lectures, I presented beautiful slides of the brain and explained its function. And I often sang and played guitar.
As I regained full consciousness the afternoon of my stroke, I experienced firsthand my own brain’s fragility. I had been cast suddenly into a chaotic world of sights and sounds. When I tried to recall information, I drew a blank. I knew that I knew all of this stuff, but where did it go? I remember thinking, “Can they take away my Ph.D.? I don’t remember any anatomy!”
Seventeen days after the stroke, I underwent brain surgery at Massachusetts General Hospital. The brain swelling from the hemorrhage, which was originally about the size of a golf ball, had receded, but my doctors needed to open my skull and remove the affected tissue and residual debris. The thought of brain surgery terrified me, but it was the only way to guarantee there would be no hemorrhages in the future. In addition, the stroke had robbed me of a feeling of brightness and clarity. The doctors assured me that if the remaining mass of debris was removed–relieving the pressure on my brain–the brightness of my character should return. However, by opening my cranium, my physical stamina would take a tremendous blow. When I awoke from surgery, the brightness had returned but I felt very weak.
I then faced the challenge of rebuilding my brain, with the support of those around me. A small amount of tissue had been permanently destroyed. Neuronal connections that had been broken by the injury would have to be reconnected, and in some cases I would have to build entirely new pathways. Exactly how this happens is not at all clear, but it is one of the marvels of the brain that neurons can be recruited to take on new functions. The recovery would not be swift: it would be two years before we would know how well I would recover from both the stroke and the surgery.
Some tasks came back more easily than others. Although I could remember what it felt like to do simple things like walking smoothly or taking stairs two at a time–my body wouldn’t cooperate. But I could visualize how I did things before. And I believed that if I held on to the memory of what it felt like to perform basic actions, I could more quickly re-establish the connections that had been broken before they completely deteriorated.
But some tasks I had to learn from scratch. When I was given a child’s simple jigsaw puzzle with a dozen pieces to fit together, I had no idea how to begin. I needed direction at every stage. I had to be told which side was right side up, what an edge was, and how to distinguish shapes. Yet the next day, when I sat down to work on the puzzle, I filled the middle of it right away.
For the first few months I had no ability to “filter” auditory information and maintain my mental concentration. When people spoke to me, I needed them to come close, speak slowly, and enunciate dearly. If two sounds were going on in the same room–either two people speaking at the same time or someone talking while the TV was on–they canceled each other out and I understood nothing. I quickly learned how much information we convey through facial expression and body language. For well over a month, talking on the telephone was confusing, frustrating, and virtually impossible.
Nearly two years have passed since my stroke. Besides having a beauty of a scar, I still have some cognitive impairment. I can handle only elementary mathematical calculations, and when I’m tired I have trouble finding the right word. But while the stroke left me physically and functionally intact, for the most part, I am far from unchanged. I have shifted away from being a superanalytical, confident risk taker who relied on the analytical skills housed in my brain’s left hemisphere. Instead I experienced a fascinating and pleasurable shift in my perspective. When my left hemisphere shut down, my right hemisphere became dominant. Now, after many months of healing, I am much more mellow and secure in my understanding of who I am and what I want to accomplish with the finite time I have.
One does not cheat death and continue to treat life the same as before. My brain will never be the same; neither will my view of my brother’s isolated and delusional world. I have experienced feeling overwhelmed by the abundance of confusing signals around me. Although I suffered a different type of confusion from that of people with schizophrenia, this has been my stroke of insight into a corner of my brother’s profoundly psychotic world. For several very disturbing and traumatic months, I lived inside a brain that could not comprehend the shared reality of our society.
I was unquestionably one of the lucky ones. I had the type of brain disorder that could simply be cut out of my head, and with time I can expect to experience a nearly complete recovery. But that is not the case for my brother and millions of others diagnosed with severe mental illness. They face a lifetime of medical treatment and cruel social discrimination.
I have crossed the bridge from the academic description of illness to personal insight, and my resolve is stronger than ever. Now I enjoy helping people understand what it is like to experience mental deterioration, with the hope that through our understanding, our fears of the mentally ill can be replaced with compassion. Comprehending the torment in the lives of those who suffer like my brother will help us become more humane.
JILL BOLTE TAYLOR (Vital Signs, page 18) is a neuroscientist and the Harvard Brain Tissue Resource Center’s National Spokesperson for the Mentally Ill. “I’m called the Singin’ Scientist,” says Taylor, who travels the country with her guitar, educating people about the beauty of the human brain. “There’s a shortage of brain tissue for research,” she says. “I try to talk to families about this, but the tension in the room is pretty thick when they realize `Oh my God, she wants my brain!’ That’s why I wrote `The Brain Bank Jingle.’ “
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