ONE JILL'S PRE-STROKE LIFE
I am a trained and published neuroanatomist. I grew up in Terre Haute, Indiana. One of my older brothers, who is only 18 months older than I, is diagnosed with the brain disorder schizophrenia. He was officially diagnosed at the age of 31, but showed obvious signs of psychosis for many years prior to that. During our childhood, he was very different from me in the way he experienced reality and chose to behave. As a result, I became fascinated with the human brain at an early age. I wondered how it could be possible that my brother and I could share the same experience but walk away from the situation with completely different interpretations about what had just happened. This difference in perception, information processing, and output motivated me to become a brain scientist.
My undergraduate academic journey began at Indiana University in Bloomington, Indiana in the late 1970s. Because of my interactions with my brother, I was hungry to understand what "normal" was at a neurological level. At that time, the subject of neuroscience was such a young field that it was not yet offered on the IU campus as a formal area of specialization. By studying both physiological psychology and human biology, I learned as much as I could about the human brain.
My first real job in the world of medical science turned out to be an enormous blessing in my life. I was hired as a lab technician at the Terre Haute Center for Medical Education (THCME), which is a branch of the Indiana University School of Medicine hosted on the campus of
Indiana State University (ISU). My time was evenly divided between the medical human gross anatomy lab and the neuroanatomy research lab. For two years, I was immersed in medical education and, while mentored by Dr. Robert C. Murphy, I fell in love with dissecting the human body.
Bypassing the master's degree, I spent the next six years officially enrolled in the ISU Department of Life Science Ph.D. program. My course load was dominated by the first-year medical school curriculum, and my research specialty was neuroanatomy under the guidance of Dr. William J. Anderson. In 1991, I received my doctorate and felt competent to teach Human Gross Anatomy, Human Neuroanatomy, and Histology at the medical school level.
In 1988, during my time at the THCME and ISU, my brother was officially diagnosed with schizophrenia. Biologically, he is the closest thing to me that exists in the universe. I wanted to understand why I could take my dreams and connect them to reality and make my dreams come true. What was different about my brother's brain such that he could not connect his dreams to a common reality and they instead became delusions? I was eager to pursue research in schizophrenia.
Following commencement from ISU, I was offered a postdoctoral research position at Harvard Medical School in the Department of Neuroscience. I spent two years working with Dr. Roger Tootell on the localization of Area MT, which is located in the part of the brain's visual cortex that tracks movement. I was interested in this project because a high percentage of individuals diagnosed with schizophrenia exhibit abnormal eye behavior when watching moving objects. After helping Roger anatomically identify Area MT's location in the human brain, [1] I followed my heart and transferred into the Harvard Medical School Department of Psychiatry. It was my goal to work in the lab of Dr. Francine M. Benes at McLean Hospital. Dr. Benes is a world-renowned expert in the postmortem investigation of the human brain as it relates to schizophrenia. I believed this would be how I could make my contribution to helping people stricken with the same brain disorder as my brother.
The week before I began my new position at McLean Hospital, my dad Hal and I flew to Miami to attend the 1993 annual conference of NAMI, the National Alliance on Mental Illness. [2] Hal, a retired Episcopalian minister with a Ph.D. in counseling psychology, had always been an advocate for social justice. We were both motivated to attend this convention to learn more about NAMI and what we could do to merge our energy with theirs. NAMI is the largest grassroots organization dedicated to improving the lives of persons living with serious mental illness. At that time, NAMI had a membership of approximately 40,000 families with a loved one who is psychiatricallydiagnosed. Now NAMI has a membership of approximately 220,000 families. The National NAMI organization advocates at the national level while the State NAMIs advocate at the state level. In addition, there are over 1100 local NAMI affiliates scattered around the country providing support, education, and advocacy opportunities for families at the community level.
That trip to Miami changed my life. A group of around 1,500 people, comprised of parents, siblings, offspring, and individuals diagnosed with severe mental illness, gathered together for support, education, advocacy, and research-related issues. Until I met other siblings of individuals with mental illness, I had not realized what a profound impact my brother's illness had had on my life. In the course of those few days, I found a family of people who understood the anguish I felt at the loss of my brother to his schizophrenia. They understood my family's struggle to help him access quality treatment. They fought together as an organized voice against the social injustice and stigma related to mental illness. They were armed with educational programs for themselves, as well as for the public, about the biological nature of these disorders. Equally important, they rallied with the brain researchers to help find a cure. I felt that I was in the right place at the right time. I was a sibling, a scientist and passionate about helping people like my brother. In my soul I felt that I had found not only a cause worthy of my effort, but also an extended family.
The week after the Miami convention, I arrived at McLean Hospital stoked and eager to start my new job in the Laboratory for Structural Neuroscience, the research domain of Dr. Francine Benes. I was all a-buzz and thrilled to begin my postmortem investigations into the biological basis of schizophrenia. Francine, whom I affectionately call the "Queen of Schizophrenia," is an amazing research scientist. Just watching how she thinks, how she explores and how she pieces together what she learns from data was a total joy for me. It was a privilege to witness her creativity in experimental design and her persistence, precision, and efficiency in running a research lab. This job was a dream come true. Studying the brains of individuals diagnosed with schizophrenia brought me a feeling of purpose.
On the first day of my new job, however, Francine threw me for a loop when she informed me that the infrequency of brain donations from families of individuals with mental illness had created a long-term shortage of brain tissue for postmortem investigation. I couldn't believe what I was hearing. I had just spent the better half of a week at National NAMI with hundreds of other families with members diagnosed with severe mental illness. Dr. Lew Judd, a former director of the National Institute of Mental Health, had moderated the research plenary, and several leading scientists had presented their research. NAMI families love sharing and learning about brain research, so I found it mind-boggling that there could be a lack of donated tissue. I decided this was merely a public awareness issue. I believed that once NAMI families knew that there was a research tissue shortage, they would promote brain donation within the organization and resolve the problem.
The next year (1994), I was elected to the National NAMI Board of Directors. It was a thrill for me to be of service to this wonderful organization, a huge honor and responsibility. Of course, the base of my platform was the value of brain donation and the shortage of psychiatrically-diagnosed tissue available for scientists to do their work. I called it the "Tissue Issue." At the time, the average age of a NAMI member was 67 years old. I was only 35. I felt proud to be the youngest person ever elected to this board. I had lots of energy and was raring to go.
With my new status within the National NAMI organization, I immediately began keynoting at State NAMI annual conventions all around the country. Before I began this venture, the Harvard Brain Tissue Resource Center (Brain Ban k [2] ), which was positioned right next to the Benes Lab, was receiving fewer than three brains a year from psychiatrically-diagnosed individuals. This was barely enough tissue for Francine's lab to do its work, much less for the Brain Bank to supply tissue to the other reputable labs that requested it. Within a few months of my traveling around and educating our NAMI families about the "Tissue Issue," the number of brain donations began to increase. Currently, the number of donations from the psychiatrically-diagnosed population ranges from 25-35 per year. The scientific community would make good use of 100 per year.
I realized that early on in my "Tissue Issue" presentations, the subject of brain donation would make some of my audience members squirm uncomfortably. There was this predictable moment when my audience would realize, "Oh my gosh, she wants MY brain!" And I would say to them, "Well yes, yes I do, but don't worry, I'm in no hurry!" To combat their obvious apprehension, I wrote the Brain Bank jingle titled "1-800-BrainBank!" [3] and began traveling with my guitar as the Singin' Scientist. 4 As I neared the subject of brain donation and the tension in the room began to rise, I'd pull out my guitar and sing for them. The Brain Bank jingle seems to be just goofy enough to effectively dampen the tension, open hearts, and make it okay for me to communicate my message.
My efforts with NAMI brought deep meaning to my life and my work in the lab flourished. My primary research project in the Benes lab involved working with Francine to create a protocol where we could visualize three neurotransmitter systems in the same piece of tissue. Neurotransmitters are the chemicals with which brain cells communicate. This was important work since the newer atypical antipsychotic medications are designed to influence multiple neurotransmitter systems rather than just one. Our ability to visualize three different systems in the same piece of tissue increased our ability to understand the delicate interplay between these systems. It was our goal to better understand the microcircuitry of the brain - which cells in which areas of the brain communicate with which chemicals and in what quantities of those chemicals. The better we understood what the differences were, at a cellular level, between the brains of individuals diagnosed with a severe mental illness and normal control brains, the closer the medical community would be to helping those in need with appropriate medications. In the spring of 1995, this work was featured on the cover of BioTechniques Journal and in 1996 it won me the prestigious Mysell Award from the Harvard Medical School Department of Psychiatry. I loved working in the lab and I loved sharing this work with my NAMI family.
And then the unthinkable happened. I was in my mid-thirties and thriving both professionally and personally. But in one fell swoop, the rosiness of my life and promising future evaporated. I woke up on December 10, 1996, to discover that I had a brain disorder of my own. I was having a stroke. Within four brief hours, I watched my mind completely deteriorate in its ability to process all stimulation coming in through my senses. This rare form of hemorrhage rendered me completely disabled whereby I could not walk, talk, read, write, or recall any aspects of my life.
I realize you are probably eager to begin reading the personal account of the morning of the stroke. However, in order for you to more clearly understand what was going on inside my brain, I have chosen to present some simple science in Chapters Two and Three. Please don't let this section scare you away. I have done my best to keep it user-friendly with lots of simple pictures of the brain so you can understand the
anatomy underlying my cognitive, physical, and spiritual experiences. If you absolutely must skip these chapters, then rest assured they will be here for you as a reference. I encourage you to read this section first, however, as I believe it will profoundly simplify your understanding.
[1]: R.B.H Tootell and J.B. Taylor, "Anatomical Evidence for MT/V5 and Additional Cortical Visual Areas in Man," in Cerebral Cortex (Jan/Feb 1995) 39-55.
[2]: https://brainbank.mclean.org or 1-800-BrainBank
[3]: See Appendix A for the lyrics to the Brain Bank jingle.