My Stroke of Insight: A Brain Scientist's Personal Journey (12 page)

To someone looking on, I may have been judged as less than what I had been before because I could not process information like a normal person. I was saddened by the inability of the medical community to know how to communicate with someone in my condition. Stroke is the number one disabler in our society and four times more strokes occur in the left hemisphere, impairing language. I think it is vitally important that stroke survivors share and communicate about how each of their brains strategized recovery. In doing so, our medical professionals could be more effective during those initial hours of treatment and assessment. I wanted my doctors to focus on how my brain was working rather than on whether it worked according to their criteria or timetable. I still knew volumes of information and I was simply going to have to figure out how to access it again.

It really was fascinating for me to watch and experience myself during those earliest stages of recovery. Because of my academics, I intellectually conceptualized my body as a compilation of various neurological programs, but it wasn't until this experience with stroke that I really understood that we all have the ability to lose pieces of ourselves one program at a time. I never really pondered what it would be like to lose my mind, more specifically, my left mind. I wish there were a safe way to induce this awareness in people. It might prove to be enlightening.

Imagine, if you will, what it would feel like to have each of your natural faculties systematically peeled away from your consciousness. First, imagine you lose your ability to make sense of sound coming in through your ears. You are not deaf, you simply hear all sound as chaos and noise. Second, remove your ability to see the defined forms of any objects in your space. You are not blind, you simply cannot see three-dimensionally, or identify color. You have no ability to track an object in motion or distinguish clear boundaries between objects. In addition, common smells become so amplified that they overwhelm you, making it difficult for you to catch your breath.

No longer capable of perceiving temperature, vibration, pain, or proprioception (position of your limbs), your awareness of your physical boundaries shift. The essence of your energy expands as it blends with the energy around you, and you sense that you are as big as the universe. Those little voices inside your head, reminding you of who you are and where you live, become silent. You lose memory connection to your old emotional
self
and the richness of this moment, right here, right now, captivates your perception. Everything, including the life force you are, radiates pure energy. With childlike curiosity, your heart soars in peace and your mind explores new ways of swimming in a sea of euphoria. Then ask yourself, how motivated would you be to come back to a highly structured routine?

I did a lot of sleeping that afternoon of the stroke -well - as much sleeping as one can do in a hospital! When I was asleep, I could block out the steady stream of energy that bombarded my senses. By closing my eyes, I could close much of my mind. Light was uncomfortable and my brain throbbed in agony when they shined that bright pen-light to check my papillary reflex. The IV in the back of my hand hurt like salt in an open wound, and I craved being unconscious to their physical manipulations. So I escaped by delving back into the sanctuary of my own silent mind.. .well, at least until the next neurological exam.

Behind the scenes, Steve called my mom G.G. (G.G. is my mother's nickname stemming from her maiden name -Gladys Gillman) to tell her about the day's events. G.G. and Steve had known one another for many years from attending the National NAMI annual conventions. They were quite fond of each another. I'm sure that this was a very difficult phone call for both of them. To hear Steve tell the story, he called her and asked her to sit down. He explained that I had experienced a major cerebral hemorrhage in the left hemisphere of my brain, and that I was currently at Massachusetts General Hospital. He assured her that the physicians had stabilized my body and that I was receiving the best care possible.

Later in the day, my boss Francine called G.G. and encouraged her to take a couple of days to get her affairs in order so she could come to Boston for an extended visit. It was clear to Francine that I would probably need surgery. She hoped G.G. would be able to come and give me long-term care in the Boston area. G.G. never hesitated. She spent ten years of her life trying to help my brother heal his mind, to no avail. However, she felt that she could help this child recover from her neurological trauma. G.G. turned all those years of frustration for not being able to heal my brother's schizophrenia into a plan for helping me recover my mind.

I awoke early the next morning to a medical student who came rushing in to take a medical history. I thought it curious that she had not been informed that I was a stroke survivor who could not speak or understand language. I realized that morning that a hospital's number one responsibility should be protecting its patients' energy levels. This young girl was an energy vampire. She wanted to take something from me despite my fragile condition, and she had nothing to give me in return. She was rushing against a clock and obviously losing the race. In her haste, she was rough in the way she handled me and I felt like a detail that had fallen through someone's crack. She spoke a million miles a minute and hollered at me as if I were deaf. I sat and observed her absurdity and ignorance. She was in a hurry and I was a stroke survivor - not a natural match! She might have gotten something more from me had she come to me gently with patience and kindness, but because she insisted that I come to her in her time and at her pace, it was not satisfying for either of us. Her demands were annoying and I felt weary from the encounter. I realized that I would have to protect my precious energy with keen caution.

The biggest lesson I learned that morning was that when it came to my rehabilitation, I was ultimately the one in control of the success or failure of those caring for me. It was my decision to show up or not. I chose to show up for those professionals who brought me energy by connecting with me, touching me gently and appropriately, making direct eye contact with me, and speaking to me calmly. I responded positively to positive treatment. The professionals who did not connect with me sapped my energy, so I protected myself by ignoring their requests.

Making the decision to recover was a difficult, complicated, and cognitive choice for me. On the one hand, I loved the bliss of drifting in the current of the eternal flow. Who wouldn't? It was beautiful there. My spirit beamed free, enormous, and peaceful. In the rapture of an engulfing bliss, I had to question what recovery really meant. Clearly, there were some advantages to having a functional left hemisphere. It would allow me the skills of interacting with the external world again. In this state of disability, however, attending to what I perceived as chaos was pure pain, and the effort it would take for me to recover, well, was that my priority?

Honestly, there were certain aspects of my new existence that I preferred over the way I had been before. I was not willing to compromise my new insights in the name of recovery. I liked knowing I was a fluid. I loved knowing my spirit was at
one
with the universe and in the flow with everything around me. I found it fascinating to be so tuned in to energy dynamics and body language. But most of all, I loved the feeling of deep inner peace that flooded the core of my very being.

I yearned to be in a place where people were calm and valued my experience of inner peace. Because of my heightened empathy, I found that I was overly sensitive to feeling other people's stress. If recovery meant that I had to feel like they felt all the time, I wasn't interested. It was easy for me to separate my "stuff" and emotions from other people's "stuff" and emotions by choosing to observe but not engage. As Marianne Williamson puts it, "Could I rejoin the rat race without becoming a rat again?"

Andrew, another medical student, came by that same morning to give me yet another neurological exam. I was wobbly, incredibly weak, and not capable of sitting up by myself, much less capable of standing up on my feet. But because he was gentle yet firm in his touch, I felt safe with him. He spoke calmly, looked me directly in the eyes, and repeated himself as needed. He was respectful of me as a person - even in this condition. I was confident he would grow up to be a fine doctor. I hope that he has.

Dr. Anne Young, who was, at that time, the chairperson of the Massachusetts General Hospital Department of Neurology (I call her the Queen of Neurology), was my neurologist. I had heard about the famous Anne Young for years while working at the Harvard Brain Bank. She served on the Advisory Committee for the Harvard Brain Bank and just two weeks earlier, it was my privilege to sit next to her at an Advisory Counsel luncheon held at the annual Neuroscience Meetings in New Orleans. At the luncheon, I presented the outreach efforts I was engaged in to increase the number of brains donated for research by the psychiatrically-diagnosed population. Dr. Young had met the "professional me" that day, so by the time she found me on her morning roster, we had already established a special rapport.

Among the many circuits in my brain that had gone off-line, it was my good fortune that my circuitry for embarrassment had also gone awry. Very much like a mother duck followed by her long row of ducklings, Dr. Young and her entourage of medical students arrived at my doorway for morning rounds. To my retrospective horror, I was buck-naked with my derriere in the air and in the middle of a sponge bath, when the Queen of Neurology and her party arrived!

Dr. Young's eyes were soft and kind, and she smiled as she looked me straight in the eye. When she approached, she immediately reached for my foot - much like a good horse handler will touch a horse on their backside as they pass behind it. Dr. Young helped me into a comfortable position. She then stood by my shoulder, gently resting her hands on my arm, and spoke softly to me - not to her students, but to me. She leaned over the edge of my bed and got close enough to my face that I could hear her. Although I could not completely understand her words, I completely understood her intention. This woman understood that I was not stupid but that I was wounded, and it was clear that she knew that it was her job to figure out which circuits of mine were still active and which parts needed healing.

Dr. Young respectfully asked me if it was okay that she teach her students about the neurological exam, and I agreed. As it turned out, I was the brain scientist who failed every task on cue and Dr. Young did not leave my bedside until she was confident that I had no more need of her. On her way out the door, she squeezed my hand and then my toe. I felt a huge sense of relief that she was my physician. I felt that she understood me.

Later that morning, it was time for me to have an angiogram that would outline the blood vessels in my brain. We needed a really good picture of exactly what type of hemorrhage I had had, and the angiogram was the test of choice. Although I thought it absolutely absurd that anyone would ask me to sign a form of consent while in this condition, I realized that policy is policy! How do we define "of sound mind and body" anyway?

Bad news certainly travels fast. Word of my stroke surged through the networks of both McLean Hospital and the membership of NAMI. Here I was, the youngest national board member they had ever elected, having a stroke at 37.

Two of my colleagues from the Brain Bank came to visit while I was in the Neurology ICU that afternoon. Mark and Pam brought a little stuffed bear for me to cuddle, and I was grateful for their kindness. Although I could sense their initial trepidation, they brought me positive energy and told me, "You're Jill, you're going to be just fine." This confidence in my complete recovery was priceless to me.

By the end of day two, I had accumulated enough oomph inside my body to roll myself over, sit up on the edge of the bed with assistance and then stand upright while leaning on someone for support. Although I found this activity to take every ounce of energy I had, I was making terrific physical progress. My right arm was very weak and continued to ache, but I could wield it around using my shoulder muscles.

On and off throughout the day, the energy in my body waxed and waned from a little bit of energy to a completely empty tank. With sleep, my reservoir filled a little and then I spent that energy trying to
do
or
think
something. Once my reserve was used up, I had to go back to sleep. I learned immediately that I had no staying power and once my energy was shot, I fell limp. I realized I had to pay very close attention to my energy gauge. I would have to learn how to conserve it and be willing to sleep to restore it.

Day two ended with a visit from Steve bearing news that G.G. would be arriving in Boston early the next morning. Initially, I didn't understand the significance of G.G. - as I had lost the concept of what a mother was. I spent the rest of my waking moments that evening trying to piece together
Mother, Mother, Mother. G.G., G.G., G.G.
I kept repeating the words to find those files, open them and remember. Eventually, I kind of understood what a mother was and what G.G. represented...enough so that I felt excited that she would be here tomorrow.