My Stroke of Insight: A Brain Scientist's Personal Journey (15 page)

My brain remained in pain over the task of learning to read for quite some time. I had a real problem concentrating on something that complicated. Thinking literally was hard enough for my brain at this early stage, but jumping to something abstract was beyond me. Learning to read took a long time and a lot of coaxing. First, I had to understand that every squiggle had a name, and that every squiggle had an associated sound. Then, combinations of squiggles - er -letters, fit together to represent special combinations of sounds (sh, th, sq, etc). When we string all of those combinations of sounds together, they make a single sound (word) that has a meaning attached to it! Geez! Have you ever stopped to think about how many tiny little tasks your brain is performing this instant just so you can read this book?

Although I struggled and struggled with learning how to read again, my brain showed obvious progress each day. We celebrated when I could finally read the sounds (words) out loud, even though I displayed no comprehension. As the days went by, my recall about the overall content of the story improved and G.G. and I were both motivated to keep plodding along.

The next step, of course, was to associate a meaning to the sound. This was particularly difficult since I was already having a hard time recalling my verbal vocabulary. The blood clot was pushing against the fibers running between my two language centers, so neither of them was working properly. Broca's area in the front of my brain was having problems creating sounds while Wernicke's in the back of my brain was confusing my nouns. There seemed to be a serious gap in my information processing and often I could not articulate what I was thinking. Although I would think that I wanted a glass of water, and picture a glass of water in my mind, the word "milk" would still come out of my mouth. Although it was helpful for people to correct me, it was vitally important that no one either finish my sentences or constantly prompt me. If I were to ever regain these abilities, then I needed to find that circuitry within my mind, in my own time, and exercise it.

Day by day, I became stronger and more capable of physical exertion. The first time G.G. took me out into the yard was a fascinating learning experience. As I stood on the front walk, I needed to be taught that the lines in the cement on the sidewalk were not significant and that it was okay for me to step on those. I needed to be told that, because otherwise I didn't know. Then I needed to be taught that the line on the edge of the sidewalk was important because there was a dip there into the grass and if I was not careful, I could twist my ankle. Again, I didn't know that and I needed to be told. And then there was the grass. I needed to be shown that the texture of the grass was different from the texture of the pavement and that sinking down into the grass was okay

- I just needed to pay attention and adjust my balance. G.G.

let me feel what it was like to walk on snow, and she held me while my foot slipped on ice. If she was going to exercise me outside, I had to relearn that each of these textures had different features, characteristics, and their unique hazards. She kept reminding me, "What's the first thing a baby does with anything you give it?" The answer, of course, is that it puts it in its mouth to feel it. G.G. knew I needed to have direct physical contact with the world to learn kinesthetically. She was a brilliant teacher.

The upcoming surgery was going to be a huge hit to my energy, and I was committed to being physically capable of enduring it. I felt that I had lost my "brightness" when the hemorrhage occurred, and my body felt dull and weary. It seemed as if there were a veil separating me from the world outside. Dr. Young assured us that surgically removing the blood clot from my brain could potentially shift my perception and I might feel "bright" again. I figured that if I could get the brightness of my spirit back, then it didn't really matter how much I recovered, and I could be happy with whatever came my way.

My apartment was located on a busy street in Winchester, Massachusetts and my backyard abutted a complex of apartments for the elderly. The driveway through the complex made a loop and G.G. would walk me around this natural track for exercise. I couldn't make it far in the early days, but with perseverance we eventually made it all the way around the loop. Sometimes we would loop twice if the weather permitted.

On the really cold days and the days of fresh snow, G.G. took me to the local grocery store for my daily exercise. She would go in and do her shopping and I would start walking up and down the aisles. This was a painful environment for me for several reasons. First, the intensity of the fluorescent lights was so powerful I had to constantly look down. G.G. encouraged me to wear sunglasses to block out the glare but this did little for the overpowering enormity of the room. Second, there was so much written information coming at me from all of the food items that I felt totally bombarded with stimuli. Third, the exposure to strangers was difficult for me emotionally. It was easy for others to see that I was a woman with some sort of problem. My face had that glazed over look, and my movements were very deliberate and in slow motion when compared to the normal shopper. Many people rushed their baskets past me. Some even snarled and grumbled at me with what I interpreted as contempt. It was hard to shield myself from the negative vibrations in the environment. Occasionally, a kind spirit offered me assistance or a smile. I found facing the busy world to be intimidating and frightening.

I was introduced to the mechanics of everyday life by accompanying G.G. when she needed to do things. I became her baby duck in training, and when I had enough energy, I followed her everywhere. Who would guess that a trip to the laundromat was excellent rehabilitation? After spending time in my apartment separating the light colored clothing from the darks, we bagged them with care. Upon arrival at the laundromat, we dumped the bags into the washers. G.G. put a quarter into my hand and then a nickel and dime. I didn't know anything about money so this was her chance to teach me. Again, the cells in my brain that understood mathematics were no longer functioning, and my attempt to deal with something so abstract as money was pitiful. When G.G. queried, "What's one plus one?" I paused for a moment, explored the contents of my mind and responded, "What's a one?" I didn't understand numbers, much less money. It felt as though I was in a foreign country with a currency I didn't understand.

Repeatedly, G.G. and I engaged in monkey-see, monkey-do behavior. The washers all ended their cycle so close to one another that I suddenly went from having nothing to do to having an overwhelming quantity to do. First we had to empty the washers. Then before loading the dryers we had to separate out the heavier items from the lighter ones. G.G. explained our strategy to me along the way. With my energy level, the washers were bearable, but frankly, the grand finale of the dryers was more demanding than I could cognitively manage! It was impossible for me to perform the "dryer dance" of pulling dry items out along the way and slamming the door closed quickly enough to keep the dryer spinning. I felt confused and desperate and wanted to crawl in a hole, hide my head, and lick my wounds. Who knew that laundry could evoke such panic in someone?

Christmas was rapidly approaching and G.G. invited my friend, Kelly, to spend the holiday with us. Together, the three of us decorated my apartment. On Christmas Eve, we found a small Christmas tree and on Christmas Day we celebrated by going out to dinner at the local Denny's. It was the simplest yet richest Christmas G.G. and I ever spent together. I was alive and recovering, and that was all that mattered.

Christmas was a day for rejoicing, but in two days I would walk into Massachusetts General Hospital to have my head cut open. From my perspective, there were two things I still needed to accomplish before surgery. One was mental and the other physical. My language was slowly coming back and it was important to me that I thank the hundreds of people who had sent me cards, letters, and flowers. I felt an intense desire to let them know I was okay, thank them for their love, and rally their continued prayers for what would come next. Folks from all over the country had signed me up for prayer lists and prayer circles ranging from local churches to the Pope's list. I felt incredible love coming my way and I wanted to share my gratitude while I still had some linguistic ability.

The greatest threat surgery posed was not only the loss of the language I had recovered, but also the loss of all future ability to ever become linguistically fluent. Since the golf ball-sized blood clot abutted the fibers running between the two language centers in my left hemisphere, it was possible that language might be excised during the surgical process. If the surgeons had to remove some of my healthy brain tissue while resecting the AVM, the consequence could be permanent loss of speech. I had come so far in my recovery that the mere possibility of this setback was chilling, but in my heart I knew that whatever the outcome, language or no language, I would still be me and we would begin again.

Although I failed miserably at reading and writing with a pen (left hemisphere/right hand), I could sit at my computer and type a simple letter (both hemispheres/both hands) that followed my stream of thought. It took me a very long time as I hunt-and-pecked at the keyboard, but somehow my body/mind connection made it happen. The most interesting thing about this experience was that after I finished typing the letter, I was not capable of reading what I had just written (left hemisphere)! G.G. edited the letter and sent it out the night following my surgery, along with a handwritten note. Since my recovery, I have heard of many stroke survivors who, although they could not speak (left hemisphere), they were capable of singing their messages (both hemispheres). I'm amazed at the resiliency and resourcefulness of this beautiful brain to find a way to communicate!

I worked day-in and day-out to get my body strong enough to endure the very calculated hit of surgery. Yet, there was one more task I wanted to achieve before my head met the saw. Five minutes up the street from my apartment was the Fellsway, a magnificent wooded acreage encompassing a couple of small mountain-like lakes. The Fellsway had been a magic-land for me. Most days after work, I unwound by wandering the trails among the pines, and rarely did I see another soul. I would sing and dance and prance and pray there. For me, it was a sacred place where I could commune with nature and rejuvenate.

I desperately wanted to climb that steep slippery hill up into the Fellsway before surgery. I ached to stand on top of the gigantic boulders, spread my arms in the breeze and feel the replenishment of my life-force power. On the day before surgery, with Kelly by my side, I slowly climbed the hill and made my dream come true. There atop the boulders overlooking the lights of Boston, I rocked in the breeze and breathed in long, strong, empowering breaths. No matter what the next day's surgery held, this body of mine was the life force power of trillions of healthy cells. For the first time since the stroke, I felt my body was strong enough to endure the upcoming craniotomy.

At 6:00 am on the morning of December 27, 1996, flanked on either side by G.G. and Kelly, I marched into Massachusetts General Hospital to have my head cut open. When I think about courage, I think about that morning.

I have had long blonde hair since I was a little girl. The last thing I remember saying to Dr. Ogilvy before he injected me with some meds was, "Hey doc, I'm 37 and single; please don't leave me totally bald!" On that note, he knocked me out.

G.G. and Kelly were quite upset with how long surgery lasted. It was late in the afternoon before word finally got to them that I was in the recovery room. Upon awakening, I realized that I felt different now. There was brightness in my spirit again and I felt happy. Up to this point, my emotions had been relatively flat. I had been observing the world, but not really engaging with it emotionally. I had missed my childlike enthusiasm since the hemorrhage and was relieved to feel like "me" again. I knew that whatever the future now held, I could face it with joy in my heart and I would be all right.

Shortly after awakening from surgery, I discovered that the left third of my head had been shaved. A nine inch upside down "U" shaped scar - running three inches up in front of my ear, three inches horizontally over my ear and three inches down behind my ear, was covered with an enormous patch of gauze. How nice of the good doctor to leave the right half of my head covered with hair. The moment G.G. arrived at my bedside she blurted, "Say something!" Her greatest fear, of course, was whether or not the surgeons had to take some of my language center neurons rendering me mute. I was able to speak to her softly. We both welled up in tears. The surgery had been an absolute success.