11. Healing and Preparing for Surgery

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.

Most important, I had to be willing to try. The try is everything. The try is me saying to my brain, hey, I value this connection and I wantit to happen. I may have to try, try, and try again with no results for a thousand times before I get even an inkling of a result, but if I don't try, it may never happen.

G.G. started the process of walking me by taking me back and forth between my bed and the bathroom. That was enough exercise for the day! Then it was back to sleep for another six hours! The first few days were like that. Lots of sleep, lots of energy expended to get to the bathroom or be fed, maybe a brief time for snuggling. Then it was back to sleep until the next go around. Once I mastered the trek to the bathroom, I headed for the living room couch where I could sit up and eat some food. Learning to use a spoon with grace took some serious effort.

One of the keys to my successful recovery was that both G.G. and I were extremely patient with me. Neither of us bemoaned what I could not do; instead we always marveled at what I could do. My mother's favorite saying during moments of trauma had always been, "It could be worse!" And we both agreed, as bleak as my situation appeared on the surface, it could have been a lot worse. I have to say, G.G. was really wonderful during this process. I was the youngest of three and my mother had been a very busy woman during my toddler years. It was really sweet for me to get the chance to be mothered by her again at this level of dependence. G.G. was persistent and kind. She never raised her voice or criticized me. I was wounded and she understood that. She was warm and loving and whether I "got it" or not didn't matter. We were caught up in the process of recovery and every moment brought new hope and new possibilities.

To celebrate, Mama and I would talk about my abilities. She was superb at reminding me about what I could not accomplish yesterday and how far I had come today. She had an eagle eye for understanding what I could do and what obstacle was in my way for attaining the next level toward my goal. We celebrated all my accomplishments. She helped me clearly define what was next and helped me understand what I needed to do to get there. She kept me on track by paying attention to my details. A lot of stroke survivors complain that they are no longer recovering. I often wonder if the real problem is that no one is paying attention to the little accomplishments that are being made. If the boundary between what you can do and what you cannot do is not clearly defined, then you don't know what to try next. Recovery can be derailed by hopelessness.

I had a blow-up mattress that Mama filled with air and she built a little bedroom for herself on the floor of my living room. She took care of everything - the grocery list, the phone calls, even the bills. She was considerate and let me sleep and sleep and sleep some more. Again, we both trusted that my brain knew what it needed in order for it to mend itself. As long as I was not sleeping due to depression, we respected the healing power of sleep.

Once home, we let my brain set its own routine. I would sleep for about six hours and then be awake for about 20 minutes. Generally, the average length of time for a complete sleep cycle is 90-110 minutes. If I was awakened prematurely by external forces, I had to go back to sleep and start that cycle over. Otherwise, I would wake with a severe headache, an irritable attitude, and not be able to either sort through stimulation or focus my attention. To protect my sleep, I slept with earplugs and G.G. turned the TV and phone down low.

After a few days of intense sleeping, my energy reservoirs enabled me to remain awake for longer periods of time. Mama was a real taskmaster, and there was no wasted time or energy. When I was awake, I was a sponge for learning and she either put something in my hands for me to do or exercised my body. Yet, when I was ready to sleep, we honored that my brain had reached its maximum level of input and we put it to bed so it could rest and integrate.

Exploring life and recovering files with G.G. was fabulous fun. She learned quickly that there was no point in asking me Yes/No questions if she really wanted to know what I was thinking. It was way too easy for me to zone out about something that I didn't really care about and just B.S. her. To make sure she had my attention and I was actually working my mind, she asked me multiple-choice questions. "For lunch," she would say, "you can have minestrone soup," and then I would go on a search in my brain to figure out what minestrone soup was. Once I understood what that option was, then she would proceed with another choice. "Or, you can have a grilled cheese sandwich." Again, I would explore my brain for what a grilled cheese sandwich was. Once the image and understanding came to me, she went on. "Or, you can have tuna salad." I remember pondering Tuna, tuna, tuna and no image or understanding came into my mind. So I queried, "Tuna?" Mama countered, "Tuna fish from the ocean, a white meat mixed with mayonnaise, onion, and celery." Since I could not find the file for tuna salad, that's what we chose for lunch. That was our strategy if I couldn't find the old file; we made it a point to make a new one.

The telephone rang all the time and G.G. was a real trooper at keeping everyone abreast of our daily successes. It was important that she had people to talk to about how well things were going, and it was helpful to me to have her positive attitude cheering me on. Day after day she shared stories that would remind me about how far we had come.

Occasionally friends came to visit, but G.G. recognized that social exchange used up my energy reserve and left me totally drained and not interested in working. She made the executive decision that getting my mind back was more important than visitation, so she stood as the guard at my door and strictly limited my social time. TV was also a terrible energy drain, and I couldn't speak on the phone because I was completely dependent on the visual cues of lip reading. We were both respectful of what I needed to do, or not do, to recover.

Somehow we innately understood that I needed to heal my brain and challenge my neurological systems as quickly as possible. Although my neurons were stunned, technically very few of them had actually died. I would not have any official speech, occupational or physical therapy until a couple of weeks after my surgery and in the meantime, my neurons were hungry to learn. Neurons either thrive when connected in circuit with other neurons, or they die when they sit in isolation without stimulation. G.G. and I were both highly motivated to get my brain back, so we took advantage of every moment and every precious ounce of energy.

My friend Steve had two little girls, so he brought me a collection of their books and toys. Included in the bag were children's puzzles and games. G.G. was now armed with a repertoire of age-appropriate things for me to do, and it was her policy that if I was awake and had any energy at all, she worked me.

My energy reserve did not discriminate between cognitive versus physical activity. Energy use was energy use so we had to create a balanced strategy for recovering everything. As soon as I was able to walk around my apartment with some assistance, G.G. took me on a tour of my life. We began in the art space as I had an entire room set up for cutting stained glass. As I looked around the room, I was amazed. All of this gloriously beautiful glass! How delightful! I was an artist. And then she took me into my music room. When I strummed the strings on my guitar and then my cello, I marveled at the magic in my life. I wanted to recover.

Opening old files in my mind was a delicate process. I wondered what it would take to recall all those filing cabinets lining my brain, which contained the details of my previous life. I knew that I knew all of this stuff; I just had to figure out how to access the information again. It had been over a week since my brain had experienced the severe trauma of the hemorrhage, but the cells in my brain were still not capable of functioning correctly because of the golf ball-sized blood clot. From my perspective, I felt that every present moment was rich with experience and existed in absolute isolation. Once my back was turned, however, I was in a new rich moment and the details of the past lingered in an image or a feeling but quickly disappeared.

One morning, G.G. decided I was ready to tackle a children's puzzle so she put the puzzle box into my hands and had me look at the picture on the cover. She then helped me open the box by pulling up the lid and placed a little tray on my lap so I could dump out all the pieces. My fingers were weak and my dexterity poor, so this task would be an excellent challenge. I was very good at monkey-see, monkey-do.

G.G. explained to me that these pieces of the puzzle would fit together to create the whole picture on the box cover. She directed me to turn all of the pieces right side up. I asked her, "What is right side up?" and she took a piece of the puzzle and showed me how to distinguish between the front and back. Once I understood the difference, I spent a little time inspecting every piece of the puzzle and eventually all 12 pieces of the puzzle were right side up. Wowie! What a sense of accomplishment! Just performing that simple mental and physical task was extremely difficult, and although I felt exhausted to have endured that level of concentration and focus, I was excited and eager to continue.

For the next task G.G. said, "Now pick out all the pieces that have an edge." I asked, "What's an edge?" Again, she patiently picked up a couple of pieces with an edge and showed me the straight cut. I then proceeded to separate out all of the edges. And once again, I felt totally accomplished and mentally fatigued.

G.G. then said to me, "I want you to take these 'outsy' pieces and hook them together with these 'insy' pieces. Also, notice that some of these insy and outsy pieces are different sizes." My right hand was extremely weak so just holding the pieces and making comparisons took a lot of effort. Mama watched me very closely and realized that I was trying to fit pieces together that obviously did not belong together based upon the image on their front side. In an effort to help me, G.G. noted, "Jill, you can use color as a clue." I thought to myself color, color, and like a light bulb going off in my head, I could suddenly see color! I thought, Oh my goodness, that would certainly make it much easier! I was so worn out that I had to go to sleep. But the next day, I went straight back to the puzzle and put all the pieces together using color as a clue. Every day we rejoiced what I could do that I could not do the day before.

It still blows my mind (so to speak) that I could not see color until I was told that color was a tool I could use. Who would have guessed that my left hemisphere needed to be told about color in order for it to register? I found the same to be true for seeing in three dimensions. G.G. had to teach me that I could see things in different planes. She pointed out to me how some objects were closer or farther away, and that some things could be positioned in front of others. I had to be taught that items, which are positioned behind other items, may have some of their parts hidden, and that I could make assumptions about the shapes of things that I could not see in their entirety.

By the end of my first week at home, I was ambulating around my apartment pretty well and was highly motivated to find ways to exercise my body to make it stronger. One of my favorite chores, even before the stroke, was washing dishes. However, in this condition, it proved to be one of my greatest teachers. Balancing myself in front of the sink and handling delicate plates and dangerous knives was pretty challenging in and of itself, but who would guess that organizing a clean dish rack required the ability to calculate? As it turns out, the only neurons in my brain that actually died on the morning of the stroke were the ones capable of understanding mathematics. (How ironic it was that my mother had spent her entire life teaching mathematics!) I could handle washing dishes, but calculating how to get all those clean dishes to fit in that tiny little rack, well, that totally dumbfounded me! It took almost a year for me to figure it out.

I loved collecting the mail from my front box. Every day for six weeks, I received 5-15 cards from people who were cheering me on. Although I could not read what they wrote, I would sit on G.G.'s mattress and look at the pictures, touch the cards and literally feel the love radiating from every message. G.G. would read the cards to me every afternoon. We hung them up all over the apartment so I was surrounded by all this love - on the doors, on the walls, in the bathroom, everywhere! It was really wonderful to receive these cards with the fundamental message being something like, "Dr. Jill, you don't know who I am, but I met you when you keynoted in Phoenix. Please come back to us. We love you and your work is so important to us." Every day I received this touching reinforcement of who I had been before the stroke. There is no question in my mind that it was the power of this unconditional support and love that gave me the courage to face the challenges of recovery. I will always be grateful for my friends and NAMI family who reached out to me and believed in me.

Learning to read again was by far the hardest thing I had to do. I don't know if those cells in my brain had died or what, but I had no recollection that reading was something I had ever done before, and I thought the concept was ridiculous. Reading was such an abstract idea that I couldn't believe anyone had ever thought of it, much less put forth the effort to figure out how to do it. Although G.G. was a kind taskmaster, she was insistent about my learning and placed a book titled The Puppy Who Wanted a Boy in my hands. Together we embarked upon the most arduous task I could imagine: teaching me to make sense of the written word. It befuddled me how she could think these squiggles were significant. I remember her showing me an "S" and saying, "This is an 'S,'" and I would say, "No Mama, that's a squiggle." And she would say, "This squiggle is an 'S' and it sounds like 'SSSSSS'." I thought the woman had lost her mind. A squiggle was just a squiggle and it made no sound.

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.