Welcome to OpEdNews, Jill.
There is no question in my mind that I would not be back to highly functional much less completely functional, if it were not for my mother. We have always been the best of friends and when I became ill, she had to choose between going to LA to help my brother with his schizophrenia or come to Boston to help me with my hemorrhage. She had spent the last decade giving care to my brother and felt as though she had failed him because she could not make him better. He could have an improved quality of life when he took his meds, but he saw the meds as evil and was opposed to taking them. When I became ill, she had all this pent up desire to help her child recover and she was 100% committed to helping me get better. With her commitment to compassion and persistent care, she provided me with a wonderful environment within which I could heal.
Do you still enjoy that same level of closeness?
GG and I talk to each other at least once a day. We are still best of friends and intimately connected to one another's lives. We decided a long time ago that we would agree to disagree. This way, there is never a big deal or argument between us because we agree to love each other in spite of our differences. We don't scare one another when we think differently or act differently which makes it okay for us to be open, honest and supportive of one another. We do a lot of laughing and now my favorite thing to do is to work in a time to go visit, take her out to lunch and then snuggle and nap away the afternoon. I love my mom. She is a huge angel in my life.
As a mother, I find your live and let live strategy so practical. And I particularly love the snuggling part! Einstein said "I must be willing to give up what I am in order to become what I will be." That quote applies perfectly to your experience. Can you tell us how you are different from the pre-stroke you?
Before the stroke I was totally focused on the development of my career. I was happily climbing the Harvard ladder, winning the big awards with my research and advocating for the mentally ill at the National level. Everything I did was based on how it promoted my career. I was very analytical, very smart and very competent and driven. I aggressively pursued what I wanted and generally achieved. I was having a great time.
These are two very different value structures and ways of being in the world.
Very true. How did you become interested in how our brains work in the first place?
I have a brother who is only 18 months older than I am. When I was a little girl (four or five) I noticed he was very different from me in the way he perceived things that happened to us and then in the way he chose to behave. Because of my relationship with him, I became fascinated with the human brain. He was eventually diagnosed with the brain disorder schizophrenia.
Being a brain scientist put you in a unique position to witness and understand what happened to you during your stroke. It also affected your recovery.
I do believe that I had an advantage for recovery because I had been trained to think biologically. I was a cellular scientist, meaning that everything I thought about when it came to my body and brain had to do with the health and well-being of the cells making up my form. If I could not move my right arm, it was not because there was a problem with my right arm but rather a problem with the cells in my brain that were responsible for the movement in my right arm. Because I thought cellularly then my recovery was focused on the cells rather than me as a human or woman. In addition, I believed in the ability of my brain to recover itself. I did not define recovery as me growing up to be the exact same person I had been. It was not my goal to regain all of her thoughts or physical capacities. Instead, I believed in the ability of my brain to increase my quality of living and in the neuroplasticity of my brain to achieve more and more sophisticated levels of connection.
What is NAMI and what is your connection with them?
NAMI is the National Alliance on Mental Illness. It is the largest grassroots organization providing a voice for those who have mental illness. The national organization is made up of some 220,000 families with mental illness. I was serving on the National Board of Directors when I experienced my stroke. I remain an active NAMI member as the President of the NAMI Greater Bloomington Area here in Bloomington. I love NAMI because it is filled with other family members who understand exactly what my family has been through having a loved one with a severe mental illness. We provide emotional support, education, advocacy and research opportunities for families with severe mental illness. For me and other families like mine, it has been a lifeline.
This is a great beginning, Jill. We'll pick up in the second part of this interview!
How to get a copy of My Stroke of Insight - A Brain Scientist's Personal Journey
National Alliance on Mental Illness
My Stroke of Insight resource website: for those who have had strokes and those who care for them. Useful information and readers share their own stories as well.