My Stroke of Insight: A Brain Scientist's Personal Journey (18 page)

Somehow I managed to not just survive, but to thrive again. I started spending time on Brain Bank responsibilities on the computer from my home. In the be
gin
ning, just a couple of hours every few days was all I could handle. Eventually I started commuting back and forth to McLean Hospital, a day or two a week. In actual fact, the commuting was more difficult than the work.

To complicate matters, following surgery my doctors insisted that I take Dilantin as a prophylactic to prevent my brain from having seizures. I had never had a seizure, but prescribing medication is a common practice when the temporal region of the brain has been surgically violated. Like a typical patient, I hated my medication because it made me feel tired and lethargic. My biggest complaint, however, was that the medicine masked my ability to know what it felt like to be me anymore. I was already a stranger to myself because of the stroke, but mix in some medication and I was even more disoriented. Because of this experience, I find that I am much more sensitive to why some people would choose insanity over the side effects of their antipsychotic medications. I was fortunate that my doctors agreed that I could take my entire dose at night before I went to bed, so by morning my mind felt much clearer. I took Dilantin for almost 2 full years following surgery.

At the six-month mark, I flew back home to Indiana to attend my 20th high school reunion. This was a perfect opportunity for me to open files about my past. Two of my best friends escorted me around, sharing stories about our time at Terre Haute South Vigo. The timing for this reunion was ideal. My brain had healed enough to absorb new information as well as open old files. Attending the reunion helped me piece together memories of my youth. But again, in this situation, because I was a stroke survivor, it was critical that I not see myself as less than I had been before. Friends from my past were very kind to me and I ended up having a great time retrieving memories.

Shortly after the reunion in June, I attended the annual NAMI convention in July. It was the end of my three-year term on the National Board of Directors and I was officially stepping down. I had prepared a five minute speech to present to an audience of over 2,000 NAMI members. With guitar in hand, tears in my eyes, and gratitude in my heart, I thanked those wonderful people for giving me the courage to come back. I will always cherish that box of cards they sent me, cheering me on. I know I wouldn't be here today, in this condition, if it hadn't been for my NAMI family.

Walking became a very important part of my routine. When you feel like a fluid it's impossible to know where your physical boundaries begin and end. Walking helped me become strong again, and within the course of that first year I managed to average three miles a day several times a week. I walked with small weights in my hands, swinging my arms here and there, flailing them about like a wild child - but in rhythm. I made sure I exercised all of my muscle groups -performing shoulder girdle, shoulder, elbow, and wrist activities. Lots of people looked at me as if I was odd, but having lost my left hemisphere ego center, I wasn't concerned with their approval or disapproval. Walking with weights helped me regain strength, balance, and posture. In addition, I worked with a friend who, through the use of massage and acupuncture, helped me identify my physical boundaries.

By the eighth month, I was back to work full time but still not completely competent either mentally or physically. There was a sluggishness about my brain that I could not shake. Unfortunately, my job description involved some complex computer database responsibilities that I knew my mind was not capable of performing. Moreover, due to the stroke, I became acutely aware of how precious little time I have here on the planet. I wanted to move back home to Indiana. Spending time with my mom and dad, while I still have them around, became a priority in my life. Fortunately, my boss agreed that I could travel for the Brain Bank as their National Spokesperson for the Mentally Ill from anywhere, and she gave me her blessing to return to Indiana.

One year after the stroke, I moved back home to the Midwest. My favorite place on earth is Bloomington, Indiana. It's the perfect-sized college town filled with interesting and creative people - and, oh yes, it's the home of Indiana University. Coming home to Indiana felt grounding to me and I knew I was exactly where I was supposed to be when my new home phone number turned out to be the exact date of my birth day, month, and year! It was one of those synchronicities in life that let me know that I was in the right place at the right time.

Post-stroke year two was spent reconstructing, as best I could recall, the morning of the stroke. I worked with a
Gestalt
therapist who helped me verbalize my right hemisphere experience of that morning. I believed that helping people understand what it felt like to experience the neurological deterioration of my mind might help caregivers better relate to stroke survivors. I also hoped that if someone read that account and then experienced any of those symptoms, they would call for help immediately. I worked with Jane Nevins and Sandra Ackerman of the The Dana Foundation on a book proposal for this story. Although our efforts were premature, I will always be grateful for their interest and assistance in helping me outline what I valued.

Eventually, when my mind was capable of learning large volumes of information again, it was time to reengage with academia. In my second post-stroke year, I was hired by Rose Hulman Institute of Technology in Terre Haute, Indiana to teach courses in Anatomy/Physiology and Neuroscience. As I saw it, they were paying me to relearn the details of my profession. I found that although I had lost my academic terminology (left hemisphere), I still remembered what everything looked like and their relationships to one another (right hemisphere). I ended up pushing my learning ability to the limit on a daily basis and for the entire quarter, I felt like my brain would explode from over use. I truly believe that challenging my brain in this way was exactly what it needed. Staying one lecture ahead of the students was demanding. For 12 weeks, I balanced work with appropriate sleep, and my brain performed beautifully. I will always be grateful to the Rose Hulman Department of Applied Biology and Biomechanical Engineering for their confidence in my ability to teach again.

To give you some idea of the chronology of my recovery, here is a brief summary of the highlights of my progress year by year. Prior to the stroke, I had been an avid Free Cell player (solitaire) but it was three years before I could wrap my mind around this card game again. On the physical plane, it took four years of walking with my hand weights, three miles a day, several times a week, before I could walk with a smooth rhythm. During the fourth year, my mind became capable of multitasking - even simple things like talking on the phone while boiling pasta. Up to that point, I had to do just one thing at a time, which meant everything required my full attention. And along the journey, it wasn't my style to complain. I always remembered what I had been like immediately following the stroke, and I counted my blessings and thanked my brain a thousand times a day for responding so well to my attempts to revive it. Having had a taste of the alternative, I spend a good bit of time feeling grateful for my life.

The one thing I thought I had lost forever was the ability to understand anything mathematical. To my amazement, however, by the fourth post-stroke year, my brain was ready to tackle addition again. Subtraction and multiplication came online around post-stroke year four and a half, but division eluded me until well into year five.

Working with flash cards helped me drill basic math back into my brain. Now I work with the Nintendo™ Brain Training and Big Brain Academy programs. I think everyone over the age of forty, as well as every stroke survivor, would benefit from using this sort of brain training tool.

By the end of the fifth year, I could jump from rock to rock along the beaches in Cancun without looking at where my feet were landing. This was a significant accomplishment, because up to this point, I had to keep my eyes looking at the ground. The highlight of my sixth post-stroke year was the fulfillment of my dream of having enough oomph in my body to climb steps two at a time. Imagery has been an effective tool for regaining physical functions. I am convinced that focusing on how it feels to perform specific tasks has helped me recover them more quickly. I had dreamed of skipping up steps every day since the stroke. I held the memory of what it felt like to race up the steps with abandon. By replaying this scene over and over in my mind, I kept that circuitry alive until I could get my body and mind coordinated enough to make it reality.

Over the years, people in my professional world have been very generous and kind to me. Initially, I was afraid my colleagues might see the post-stroke me as having less value and treat me patronizingly, or perhaps even discriminate against me. Happily this has not been the case. This stroke has not only opened my eyes to the beauty and resiliency of the human brain, but also to the generosity of the human spirit. Many beautiful people have nurtured my heart, and I am grateful for all the kindnesses I have received.

Although I had been traveling part time as the
Singin' Scientist
for the Harvard Brain Bank since post-stroke year two, during my seventh year, I accepted an adjunct teaching position in the Indiana University Department of Kinesiology. In addition, teaching Gross Anatomy has always been my greatest joy, and I began volunteering in the local IU School of Medicine's Gross Anatomy lab. Revisiting the body and teaching future physicians about its miraculous design has been a thrilling privilege for me.

Also in that seventh post-stroke year, my need for sleep at night had cut back from 11 hours to nine and a half. Up until this point, in addition to a full night's sleep, I was a happy napper. For the first seven years, my dreams had been a bizarre reflection of what was going on in my brain. Instead of having dreams with people and a storyline, my mind scrolled tiny unrelated bits of data. I presume this reflected how my brain pieced pixilated information together to form a complete image. It was shocking when my dreams started featuring people and a storyline again. In the beginning, the scenes were broken and nonsensical. By the end of that seventh year, however, my mind was so busy during the night that I felt little refreshment upon waking.

During the eighth year of recovery, my perception of myself finally shifted from that of being a fluid back to that of being a solid. I began slalom water skiing regularly and I believe that pushing my body as hard as I could helped solidify my brain/body connections. I confess that although I celebrate being a solid again, I really miss perceiving myself as a fluid. I miss the constant reminder that we are all
one.

I now live what I would describe as the perfect life. I still travel for the Harvard Brain Bank as the
Singin' Scientist.
I teach what I love - Neuroanatomy and Gross Anatomy to medical students at the IU School of Medicine. I regularly spend time as the consulting neuroanatomist at the Midwest Proton Radiotherapy Institute (MPRI), housed at the IU Cyclotron, where we use a precisely guided proton beam to battle cancer. To help other stroke survivors, I'm working on the creation of a virtual reality system whereby individuals can neurologically rehabilitate themselves through what I call "visually directed intention."

On the physical front, I love skiing across Lake Monroe early in the morning, and I faithfully walk around my neighborhood in the evenings. For creativity, I play in my art space creating stained glass wonders (mostly brains) and my guitar is a continual source of pleasure. I still talk to my mom every day, and as the president of the local Greater Bloomington Area NAMI affiliate, I remain active in advocacy for the mentally ill. Helping people liberate their own inner peace, joy, and magnificent beauty has become my personal agenda.

Over the years, I have had the opportunity to share my story with audiences ranging from readers of
Discover Magazine,
and Oprah Winfrey's
O Magazine,
to the
Stroke Connection Magazine
of the American Stroke Association (ASA), as well as the
Stroke Smart Magazine
of the National Stroke Association (NSA). My recovery story has been featured on PBS's
The Infinite Mind
and can still be heard on the WFIU
Profiles
program.
¹
In addition, there is a wonderful PBS program titled
Understanding: The Amazing Brain,
which airs internationally. I encourage you to tune in as they did a superb job teaching about the plasticity of the brain.

1

www.indiana.edu
/ ~wfiu / profiles.htm