My Stroke of Insight: A Brain Scientist's Personal Journey (13 page)

On the morning of day three, I was moved out of Neurology ICU and ended up sharing a room with a very interesting character. This woman had been suffering from epileptic seizures so the doctors had her head all wrapped up in a large white towel, with numerous electrodes and wires protruding from her head in all directions. The wires were attached to a variety of recording devices that lined her side of the room and, although she was free to move about between her bed, chair, and bathroom, she was quite the sight! I'm sure all of my visitors thought she resembled Medusa. Out of boredom, she routinely struck up a conversation with everyone who looked in on me. I, on the other hand, was desperate for silence and minimal sensory stimulation. The TV noise from her half of the room was a painful suction of my energy. I considered it totally counterintuitive to my idea of what I found to be conducive for healing.

There was a lot of excitement floating in the air that morning. My colleagues, Francine and Steve, had already arrived and several doctors were milling about the immediate area. The results were in from the angiogram and it was time to get down to the business of setting my treatment plan. I remember clearly the moment G.G. came around the corner into my room. She looked me straight in the eye and came right to my bedside. She was gracious and calm, said her hellos to those in the room, and then lifted my sheet and proceeded to crawl into bed with me. She immediately wrapped me up in her arms and I melted into the familiarity of her snuggle. It was an amazing moment in my life. Somehow she understood that I was no longer her Harvard doctor daughter, but instead I was now her infant again. She says she did what any mother would have done. But I'm not so sure. Having been born to my mother was truly my first and greatest blessing. Being born to her a second time has been my greatest fortune.

I felt perfectly content all wrapped up in my mother's love. She was kind and soft and obviously freaking out a little, but overall, I thought she was nice and I liked her. It was a perfect moment for me, and who could ask for anything more? I was catheterized so I never had to get out of bed and this very nice woman walked right into my life and surrounded me with love!

And then the conference began. Introductions were made, reports were in, and all the key players were present. Dr. Young set the tone and spoke directly to me as though I could understand. I appreciated that she did not simply speak to the others about me. First, she introduced Dr. Christopher Ogilvy, a neurosurgeon who specialized in arteriovenous malformations (AVMs). Dr. Ogilvy explained that the angiogram confirmed that my brain contained an AVM, and this congenital malformation was responsible for my hemorrhage. I had a history of migraine headaches which never responded to medication. As it turns out, my physicians predicted that I was not having migraines at all, but was experiencing small bleeds over the years.

Although I could not understand much of what was being said during this pow-wow around my bedside, I was focused on what was being conveyed nonverbally. The expressions on people's faces, the tones of their voices, how they held their bodies as they exchanged information - were fascinating to me. In a funny sort of way, I was comforted to know that the gravity of my situation did actually warrant all of this fuss. No one wants to create this much commotion only to learn that, no, it was not really a heart attack - just gas!

The atmosphere in the room was tense as Dr. Ogilvy described the problems with the blood vessels in my brain. When he suggested that I have a craniotomy to remove the remnants of the AVM and a clot the size of a golf ball, G.G. became unglued and her nervousness was obvious. Dr. Ogilvy further explained that if the AVM were not surgically removed, I stood the likely chance of hemorrhaging again and next time, I might not be so lucky getting help.

Honestly, I didn't really understand all of the details about what they were proposing to do - partly because the cells in my brain that understood language were swimming in a pool of blood and partly because of the sheer speed of their conversation. In my condition, I thought I understood that they were planning on passing a suction instrument up through my femoral artery into my brain to suck out the excess blood and threatening tangle of vessels. I was aghast when I realized it was their plan to cut my head open! Any self-respecting neuroanatomist would
never
allow anyone to cut their head open! Intuitively, if not academically, I understood that the pressure dynamics between the thoracic, abdominal and cranial cavities are so delicately balanced that any major invasion like a craniotomy would certainly throw all of my energy dynamics completely out of whack. I feared that if they opened my head while I was already energetically compromised, I would never be able to recover my body or any of my cognition.

I made it perfectly clear to everyone that under no circumstances would I ever agree to permit them to open my head. No one seemed to understand that my body was already thoroughly deflated and I would not be able to survive another severe blow - even if it was a highly calculated one. Nevertheless, I knew I was vulnerable and at the mercy of the people in this room.

The meeting ended with the craniotomy option temporarily tabled, even though it was clear to everyone (except me) that it was now G.G.'s job to convince me to have the surgery. With tremendous compassion, G.G. intuited my fears and tried to comfort me, "That's okay sweetie, you don't have to have the surgery. No matter what, I'll take care of you. But if you don't have that AVM removed, there will always be the possibility that your brain will spit blood again. In that case, you can move in with me and I'll be attached to your hip for the rest of your life!" While my mom is a wonderful woman, living my life with her attached to my hip was not what I had in mind. Within a couple of days, I agreed to have the surgery to remove the AVM. It then became my job to get my body strong enough, over the next few weeks, to survive the pending blow.

For the next few days following the stroke, my stamina waxed and waned proportionately with my napping and exerted effort. I learned early that every effort I put forth was the only effort that was important. On day one, for example, I had to rock and rock and rock some more before I had enough oomph to roll upward. While in this stage of rocking, I had to recognize that rocking was the only activity that mattered. Focusing my success on the final goal of sitting up was not wise because it was far beyond my current ability. If I had decided that sitting-up was the goal, and then tried and failed repeatedly on every trial, I would have been disappointed with my inability and stopped trying. By breaking the effort of sitting-up into the smaller steps of rocking and then rolling upward, I found regular success along the way - and celebrated accordingly - with sleep. So it was my strategy to rock and then rock some more. Once I mastered rocking frequently, then I strove to rock with enthusiasm. By the time I could rock with ease, my body flowed into the next natural movement of rolling upward. And then again, my efforts were all about rolling upward, frequently, and then with enthusiastic vigor. Rolling upward with enthusiasm led me right into sitting up and I enjoyed the ongoing satisfaction of success.

Essentially, I had to completely inhabit the level of ability that I could achieve before it was time to take the next step. In order to attain a new ability, I had to be able to repeat that effort with grace and control before taking the next step. Every little
try
took time and energy, and every effort was echoed by a need for more sleep.

By day four, I was still spending most of my time sleeping as my brain craved minimal stimulation. It was not that I was depressed, but my brain was on sensory overload and could not process the barrage of incoming information. G.G. and I agreed that my brain knew best what it needed to do in order to recover. Unfortunately, it is not common for stroke survivors to be permitted to sleep as much as they would like. But for me, we felt that sleep was my brain's way of taking a "time-out" from new stimulation. We acknowledged that my brain was still physically traumatized and it was obviously totally confused concerning the information coming in through my sensory systems. We agreed that my brain needed quiet time to make sense out of what it had just experienced. For me, sleep was filing time. You know how chaotic an office can become if you don't take time to file? It was the same for my brain - it needed time to organize, process and file its hourly load.

I had to choose between physical and cognitive efforts because they both wore me out. On the physical front, I was making terrific progress regaining my basic stability. I could sit up with some ease now, stand and even walk a little down the hall with lots of assistance. My voice, on the other hand, was weak since I had no strength to expel air. As a result, I spoke in a soft whisper and my speech was broken and labored. I struggled with finding the right word and frequently confused meanings. I remember thinking water but saying milk.

Cognitively, I struggled to comprehend my existence. I still couldn't think in terms of past or future so I burned a lot of mental energy trying to piece together my present moment. Although thinking was very difficult for me, I was making cognitive improvement. I had grown accustomed to my doctor telling me to remember three things, and then at the end of our time together, asking me what those three things had been. G.G. says that she knew I was going to be all right the day he asked me to remember: firefighter, apple, and 33 Whippoorwill Drive. I had failed this task miserably up to this point, but I decided that today I was going to pay attention to nothing else that he said and just repeat the words over and over again in my mind, holding them in memory until it was time to blurt them out. At the end of our visit, he asked me to recall the three items. With confidence I uttered, "Firefighter, apple, something Whippoorwill Drive." Then I added that although I couldn't recall the exact address, I'd go up and down the street knocking on every door until I found the right house! G.G. breathed a huge sigh of relief when she heard this. To her it indicated that my resourceful brain was back on track, and she was reassured that I would once again be able to find my way in the world.

On that same day, Andrew came for his daily visit and one of the games he would play with me to assess my cognitive aptitude was to ask me to count backwards from 100 by sevens. This task was particularly difficult for me because the cells in my brain that understood mathematics had been permanently destroyed. I asked someone for the first few answers to that question and the next time Andrew asked me, I spewed three or four of the correct responses! I immediately confessed that I had cheated and really had no clue how to begin this task. But it was important to me that Andrew understand that although certain portions of my mind could not function, other parts of my brain, in this case my scheming mind, would compensate for lost abilities.

On day five, it was time for me to go home to get strong enough to endure surgery. A physical therapist taught me how to climb a stair, with support, and then I was released to G.G.'s care. I felt physically in peril as my mother drove like a Hoosier provincial in downtown Boston traffic! We draped my face to block out the sunlight. I prayed the whole way home.

On December 15, 1996 I returned to my Winchester apartment where I now had less than two weeks to prepare for surgery. I lived on the second floor of a two-family home so I had to sit on my butt and bop myself up the stairs (No, that's not the way the physical therapist taught me to do it!). By the time I made it up that last step, I was drained and my brain craved sleep. I was home. Finally. Home, where I could crawl into a hole and hibernate without extraneous interruptions. All of me longed for healing quietude. I collapsed on my waterbed and passed out.

I was totally blessed to have G.G. as my caregiver. If you ask her, she will tell you that she had no idea what she needed to do - she just let things unfold naturally, step by step. She intuitively understood that to get from A to C, I had to learn A, then B, and then C. It was as if I had an infant brain again and had to learn virtually everything from scratch. I was back to the basics. How to walk. How to talk. How to read. How to write. How to put a puzzle together. The process of physical recovery was just like stages of normal development. I had to go through each stage, master that level of ability, and then the next step unfolded naturally. Methodically, I had to learn to rock and then roll over before I could sit up. I had to sit up and rock forward before I could stand. I had to stand before I could take that first step, and I had to be relatively stable on my feet before I could climb a stair by myself.