8. Neurological Intensive Care

Once my physicians were satisfied that I was no longer a medical emergency, they moved me up to the Neurological Intensive Care Unit. All I knew was that I had a roommate to my right, my feet faced the door, and my left side was close to a wall. Past that, I didn't have much awareness except for my head and right arm, which both continued to ache.

I experienced people as concentrated packages of energy. Doctors and nurses were massive conglomerations of powerful beams of energy that came and went. I felt rushed by an outer world that did not understand how to communicate with me. Because I could not speak or understand language, I sat silently on the sideline of life. I wish I had a dollar for every time I was given a neurological exam in that first 48 hours. Folks buzzed in, probed, prodded, and repeatedly sought neurological information. My energy was drained by these ongoing activities. I would have appreciated it if they would have consolidated their efforts and shared the information.

With this shift into my right hemisphere, I became empathic to what others felt. Although I could not understand the words they spoke, I could read volumes from their facial expression and body language. I paid very close attention to how energy dynamics affected me. I realized that some people brought me energy while others took it away. One nurse was very attentive to my needs: Was I warm enough? Did I need water? Was I in pain? Naturally, I felt safe in her care. She made eye contact and was clearly providing me with a healing space. A different nurse, who never made eye contact, shuffled her feet as though she were in pain. This woman brought me a tray with milk and jello, but neglected to realize that my hands and fingers could not open the containers. I desperately wanted to consume something, but she was oblivious to my needs. She raised her voice when she spoke to me, not realizing that I wasn't deaf. Under the circumstances, her lack of willingness to connect with me scared me. I did not feel safe in her care.

Dr. David Greer was a kind and gentle young man. He was genuinely sympathetic to my situation and took the time to pause during his busy routine to lean down near my face and speak softly to me. He touched my arm to reassure me that I would be okay. Although I could not understand his words, it was clear to me that Dr. Greer was watching over me. He understood that I was not stupid but that I was impaired. He treated me with respect. I'll always be grateful for his kindness.

On that first day, my condition progressed and improved rapidly in some areas, but not at all in others. Although recovery would take years, certain parts of my brain were still intact and eagerly engaged in trying to decipher the billions of bits of data making up the present moment. The most notable difference between my pre- and post-stroke cognitive experience was the dramatic silence that had taken up residency inside my head. It wasn't that I could not think anymore, I just didn't think in the same way. Communication with the external world was out. Language with linear processing was out. But thinking in pictures was in. Gathering glimpses of information, moment by moment, and then taking time to ponder the experience, was in.

One of my doctors asked me the question, "Who is the President of the United States?" In order for me to process this question and come up with an answer, I had to first realize that a question was being asked of me. Once I realized someone wanted my attention, I needed them to repeat the question so I could focus on the sounds being spoken, and then I had to pay really close attention to the movement of their lips.

Because it was very difficult for my ears to distinguish a single voice from background noise, I needed the question to be repeated slowly and enunciated clearly. I needed calm, clear communication. I may have had a dense expression on my face and appeared ignorant, but my mind was very busy concentrating on the acquisition of new information. My responses came slowly. Much too slowly for the real world.

Paying attention to what someone was saying took an enormous amount of effort, and I found it to be tiring. First, I had to pay attention with my eyes and ears, neither of which were working normally. My brain had to capture the sound and then match that sound up with a specific lip movement. Then, it had to search and see if there was any meaning for those combinations of sounds stored anywhere in my wounded brain. Once I got one word figured out then I had to search for combinations of words, and with an impaired mind, that took hours!

The effort it took for me to pay attention to what someone was saying was like the effort it takes to pay attention to someone who is speaking on a cell phone with a bad connection. You have to work so hard to hear what the person is saying that you may become impatient, frustrated, and hang up the phone. That's the kind of effort it took for me to hear a voice in a noisy background. It took a tremendous amount of willingness and determination on my part, and infinite patience on the part of the speaker.

For my information processing, I took the sounds of the key words and repeated them over and over again in my brain so that I would not forget what they sounded like. Then I would go on a process of exploration to identify a meaning that matched the sound of those words. President, President, what is a President? What does that mean? Once I had a concept (picture) of what a President was then I moved on to the sound United States. United States, United States, what is a United States? What does that mean? Once I found the file for United States, again, it was a picture in my mind. Then I had to put together the two images - that of a President and that of the United States. But my doctor was not asking me anything that was really about the United States or about a President. He was asking me to identify a specific man, and that was a completely different file. Because my brain could not get from "President" and "United States" to "Bill Clinton," I gave up - but only after hours of probing and exhausting mental gymnastics.

My ability to cognate was erroneously assessed by how quickly I could recall information, rather than by how my mind strategized to recover the information it held. After all the effort I had put into the task of trying to find the answer to the initial question, it ended up that there were too many associations for me to pick through. Since I was thinking in pictures, I had to start with a single image and then expand upon it. I could not start with the general and find the more specific without exploring the billions of possibilities - which was draining. Perhaps if they had asked me a question about Bill Clinton specifically, then I would have found an image of Bill and then been able to expand from there. If they had asked me, "Who is Bill Clinton married to?," then I would have found an image of Bill Clinton, an image of matrimony and then hopefully an image of Hillary standing by her man. When using pictures to navigate my way back into language, it was impossible to go from a general file to a specific detail.

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 threedimensionally, 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.