My Stroke of Insight: A Brain Scientist's Personal Journey (14 page)

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 want it 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.