My Stroke of Insight: A Brain Scientist's Personal Journey (17 page)

In the best style I could, I put together a 20 minute gig that I practiced day in and day out for over a month. As long as no one interrupted me or asked any questions about the brain, I thought I could get by without anyone detecting signs of my recent stroke. Although I was rather robotic in my movements, I didn't miss a beat with my slides and I walked

away from Fitchburg feeling triumphant.

Although I did not qualify for occupational or physical therapy, I spent significant time in speech therapy for four months following surgery. Speaking was less of a problem for me than reading. G.G. had already taught me the letters of the alphabet and the sounds that go with each of those squiggles, but stringing them together as words, and then adding meaning, was really more than my brain wanted to handle. Reading for comprehension was a disaster. On my first meeting with my speech therapist, Amy Rader, I was to read a story that had 23 facts in it. She had me read the story out loud and then answer her questions. Out of 23 questions I scored two right!

When I first started working with Amy, I could read the words out loud but not attach any meaning to the sounds that came out of my mouth. Eventually, I could read one word at a time, attach a meaning to that sound, and then go on to the next word. I think a lot of the problem was that I could not attach one moment to the next or think linearly. As long as every moment existed in isolation, then I could not string ideas or words together. From the inside, I felt as though the reading part of my brain was all but dead and was not interested in learning again. With the guidance of Amy and G.G., week by week, I took the steps I needed in order to achieve my goals. It was very exciting because regaining vocabulary meant regaining some of the lost files in my brain. Just trying exhausted me, but slowly, word by hard-fought word, files were opened and I was re-introduced to the life of the woman I had been. With G.G. patiently steering from the helm, I found my way back into the veiled crevices of my gray matter.

For a successful recovery, it was important that we focus on my ability, not my disability
. By celebrating my achievements every day, I stayed focused on how well I was doing. I made the choice that it didn't matter if I could walk or talk or even know my name. If all I was doing was breathing, then we celebrated that I was alive - and we breathed deeper together. If I stumbled, then we could celebrate when I was upright. If I was drooling, we could celebrate swallowing! It was way too easy to focus on my disabilities because they were vast.
I needed people to celebrate the triumphs I made everyday because my successes, no matter how small, inspired me.

By the middle of January, a few weeks after surgery, my left brain language center started to come back online and talk to me again. Although I really loved the bliss of a silent mind, I was relieved to know that my left brain had the potential to recover its internal dialogue. Up to this point, I had struggled desperately to link my thoughts together and think across time. The linearity of internal dialogue helped build a foundation and structure for my thoughts.

One of the fundamental secrets to my success was that

I made the cognitive choice to stay out of my own way during the process of recovery.
An attitude of gratitude goes a long way when it comes to physical and emotional healing. I enjoyed a lot of my recovery experience as one process flowed naturally into another. I found that as my abilities increased, so did my perception of the world. Eventually I was like a toddler wanting to go out and explore - as long as my mommy wasn't too far away. I tried a lot of new things, had a lot of successes, and tried some things that I wasn't ready for yet. But I made the choice to stay out of my own way emotionally and that meant being very careful about my self-talk. It would have been really easy, a thousand times a day, to feel as though I was less than who I was before. I had, after all, lost my mind and therefore had legitimate reason to feel sorry for myself. But fortunately, my right mind's joy and celebration were so strong that they didn't want to be displaced by the feeling that went along with selfdeprecation, self-pity, or depression.

Part of getting out of my own way meant that
I needed to welcome support, love, and help from others
.

Recovery is a long-term process and it would be years before we would have any idea what I would get back. I needed to let my brain heal and part of that meant allowing myself to graciously receive help. Prior to the stroke, I had been extremely independent. I worked during the week as a research scientist, traveled on the weekends as the
Singin' Scientist
and managed my home and personal affairs completely on my own. I was not comfortable accepting help, but in this state of mental incapacitation, I needed to let people do things for me. In many ways, I was fortunate that my left hemisphere was injured, for without that ego portion of my language center, I welcomed the help of others.

My successful recovery was completely dependent on my ability to break every task down into smaller and simpler steps of action.
G.G. was a wizard at knowing what I needed to be able to do in order to proceed to the next level of complexity. Whether I was rocking and rolling-over with enthusiasm before I could sit up, or learning that it was okay to step on cracks while walking on the sidewalk, each of these little stages determined my ultimate success.

Because I could not think linearly,
I needed everyone to assume that I knew nothing so that I could relearn everything from the beginning.
Pieces of information no longer fit together in my brain. For instance, I might not know how to use a fork and may need to be shown on several different occasions.
I needed my caregivers to teach me with patience.
Sometimes I needed them to show me something over and over again, until my body and brain could figure out what I was learning. If I didn't "get it" then it was because that part of my brain had a hole in it and could not understand or absorb the information. When people raised their voices while teaching me, I tended to shut down. Like an innocent puppy that is being yelled at, I would become afraid of that person, repelled by their energy, and tend to not trust them. It was essential that my caregivers remember that I was not deaf; my brain was simply wounded. Most important, I needed my caregivers to teach me the 20
^th
time with the same patience they had the first time.

I needed people to come close and not be afraid of me.
I desperately needed their kindness. I needed to be touched - stroke my arm, hold my hand, or gently wipe my face if I'm drooling. Just about everyone knows someone who has had a stroke. If their language center has been disrupted, the stroke survivor can probably not carry on a conversation with visitors. I know it can be very uncomfortable for a healthy person to try to communicate with someone who has had a stroke, but
I needed my visitors to bring me their positive energy.
Since conversation is obviously out of the question, I appreciated when people came in for just a few minutes, took my hands in theirs, and shared softly and slowly how they were doing, what they were thinking, and how they believed in my ability to recover. It was very difficult for me to cope with people who came in with high anxious energy. I really needed people to take responsibility for the kind of energy they brought me. We encouraged everyone to soften their brow, open their heart, and bring me their love. Extremely nervous, anxious or angry people were counter-productive to my healing.

One of the greatest lessons I learned was how to feel the physical component of emotion. Joy was a feeling in my body. Peace was a feeling in my body. I thought it was interesting that I could feel when a new emotion was triggered. I could feel new emotions flood through me and then release me. I had to learn new words to label these "feeling" experiences, and most remarkably, I learned that I had the power to choose whether to hook into a feeling and prolong its presence in my body, or just let it quickly flow right out of me.

I made my decisions based upon how things felt inside. There were certain emotions like anger, frustration or fear that felt uncomfortable when they surged through my body. So I told my brain that I didn't like that feeling and didn't want to hook into those neural loops. I learned that I could use my left mind, through language, to talk directly to my brain and tell it what I wanted and what I didn't want. Upon this realization, I knew I would never return to the personality I had been before. I suddenly had much more say about how I felt and for how long, and I was adamantly opposed to reactivating old painful emotional circuits.

Paying attention to what emotions feel like in my body has completely shaped my recovery. I spent eight years watching my mind analyze everything that was going on in my brain. Each new day brought new challenges and insights. The more I recovered my old files, the more my old emotional baggage surfaced, and the more I needed to evaluate the usefulness of preserving its underlying neural circuitry.

Emotional healing was a tediously slow process but well worth the effort. As my left brain became stronger, it seemed natural for me to want to "blame" other people or external events for my feelings or circumstances. But realistically, I knew that no one had the power to make me feel anything, except for me and my brain. Nothing external to me had the power to take away my peace of heart and mind. That was completely up to me. I may not be in total control of what happens to my life, but I certainly am in charge of how I choose to perceive my experience.

The number one question that I am most frequently asked is, "How long did it take you to recover?" My standard response, and I don't mean to be trite, is, "Recover what?" If we define recovery as regaining access to old programs, then I am only partially recovered. I have been very fussy this time around about which emotional programs I am interested in retaining and which ones I have no interest in giving voice to again (impatience, criticism, unkindness). What a wonderful gift this stroke has been in permitting me to pick and choose who and how I want to be in the world. Before the stroke, I believed I was a product of this brain and that I had minimal say about how I felt or what I thought. Since the hemorrhage, my eyes have been opened to how much choice I actually have about what goes on between my ears.

Physical recovery from the brain surgery was minimal when compared to the task of rebuilding my mind and recovering awareness of my body. Following surgery, G.G. kept my head wound clean and the 35 stitches healed beautifully. The greatest challenge I faced was a problem with the left temporal mandibular joint (TMJ) of my jaw due to surgery, but with the use of a healing system called the Feldenkrais technique, it mended quickly. The scar, however, was numb for five years and I believe the three drill holes in

my skull completely reknitted by year six.

My mother was a very wise caregiver, and although she was protective, she did not stand in the way of progress. In the middle of February, two months after the stroke, I took my first solo adventure into the world. My verbal language was good enough to keep me out of trouble (we hoped) and I spent minimal time out and about alone. G.G. drove me to the airport and escorted me to my seat on the plane. A friend picked me up at the other end, so I didn't have to navigate life in the big world for very long by myself. I relished this first leap out of the nest as a huge step in my pursuit of independence. Based on this success, I was encouraged to take even bigger risks.

At the three-month mark, G.G. taught me how to drive again. Operating an enormous metal box on wheels at remarkably fast speeds with a bunch of other busy people doing the same thing while they eat, drink, smoke, and, oh yes, talk on their cell phones, reminded me that I was a fragile living being and life is a precious gift. My brain was still struggling with reading, and the hardest part of learning to drive a car again was to remember to look for written signs. Obviously this was a problem. And even when I did see the sign, my comprehension was painfully slow.
So, what's that big green sign up there saying? Oh s#*?! I just passed my exit!

By mid-March, G.G. decided I was ready to try living on my own again. Although I was far from really being back in the game, she felt that with the support of my friends, I was ready to try my wings. She reassured me that if I needed her, all I had to do was call and she would be on the first flight out. A part of me was thrilled about my increased independence. A bigger part of me was terrified.

Within a few weeks, the first major test of my readiness to resume my life was the gig in Fitchburg. That gave me something to concentrate on while I began fending for myself. My friend Julie drove me to the presentation and it went so well that I was heady with success (pun intended).