North Bay Woman

NORTH BAY WOMAN 37 were suffering, with this disease. I heard from patients, I heard from caregivers, I heard from doctors and neurologists trying to treat patients during the day and then go home to be a caregiver themselves. I found myself in this unique position of snapshotting my journey with this disease. "Lewy body has over 40 symptoms; that's why it's so difficult to diagnose," Schneider Williams says. "Once I started learning more and more, I was hungry to get to the next bit of information and put them together to find justice for my husband, for me and to help anyone else out there who is on this path." The American Brain Foundation, a 25-year-old organization, came to the artist in 2015 and honored her with its Commitment to Cures Award. She was asked to write an editorial about what she has learned both as a caregiver and in terms of the science. That same year, she was invited to give an hour-long keynote speech to a roomful of neurologists in Vancouver at a medical convention. Afterward, she says, "I got a standing ovation. The line of doctors waiting to talk to me, with tears in their eyes; well I was forever changed. What I saw was that somehow, Robin and I in our experience with figuring out that he had Lewy body, were filling a gap of desperately needed information. This disease is bigger than all of us. It needs all of us, working together, doctor and patient and caregiver, to help find a cure." Among the projects Schneider Williams now has lined up, are gallery shows in the United States and Europe, with a significant percentage of the proceeds earmarked for the American Brain Foun- dation. Next spring she's partnering with the USC Keck School of Medicine and Suzanne Dworak-Peck School of Social Work to create a day- long symposium on how art heals the brain. In the summer she will be speaking at UCLA to the neurologist fellows and residents. In the fall she will be keynote speaker again at a conference for the American Neurological Association. As she describes it, "We are going to be having artists from five different disciplines each sharing about our experience, and literally having neuroscientists describing why the art heals the brain. And what happens in that process. In the next coming decades, I hope and pray that I get to push more into that arena." Schneider Williams says that her commitment to art, her brain research and her loving family were what helped her get through the agony of Robin Williams' death and the media hurricane that followed. Now, that work has become a new direction for what she sees as the rest of her life. "Those synchronicities between Robin and me, the way my art has led to my research, my understanding of why the two of us met when we did and came together — I could go on for days. I look back at why we came together when we did in our lives and it turns out, maybe it was for the work that we were to do together. And what we were to give each other. When he passed, everyone would say, 'You met him too late.' And I would say, 'Oh no, we met right on time.'" n To learn more about Lewy body disease visit: AmericanBrainFoundation.org. If interested in purchasing the "Outsmart Brain Disease" T-shirt, the link is at the bottom of the home page. From top to bottom: Artist Susan Schneider Williams takes a break from painting at her Tiburon home. – Photo by Stuart Lirette Schneider Williams drawing at home in Lucas Valley in 1975. She moved from Detroit to Marin as an adolescent. – Photos courtesy of Susan Schneider Williams Brushes and oils are at the ready in Schneider Williams' studio. – Photo by Stuart Lirette

• Cover