When Jennifer Ayers-Moore’s beloved older brother was diagnosed with schizophrenia, at first she tried to pretend that the person she grew up with would one day reappear.
“My brother and I always had this connection,” Ayers-Moore said. “After he was diagnosed, I was in denial for a long time. I thought, ‘I’m going to wake up today and it is going to be just like it was yesterday.’”
But Ayers-Moore’s brother, Nathaniel Ayers, the brilliant Juilliard-educated musician whose life was portrayed in the book and subsequent movie “The Soloist,” never did go back to being the same person Moore knew before his mental illness.
“I didn’t understand how my brother got ill in the first place,” Ayers-Moore said. “We brought him to school one way and he came back a different way. It took me a long time to get out of that frame of mind. He was my brother. I wanted the guy I knew before he went to Juilliard to come back. ”
Eventually, with the “love and support of others who had been in similar caretaking positions,” Ayers-Moore learned to appreciate the person her brother became after his diagnosis.
“I realized that I have a very unique person as a brother,” she said. “I’ve learned to really just let things go and not get so stressed about what he may say to me or how he might react.”
One way that Ayers-Moore was able to make that adjustment was through the National Alliance on Mental Illness (NAMI). “That organization has helped me out a lot,” she said, explaining that she has attended NAMI meetings and conferences around the country and in her hometown of Atlanta: “At first, I attended meetings just to get an idea of how I as a sister can be a better support to my brother. NAMI helped me with that, and it also helped me build connections with people who understand exactly where I’m coming from.”
After “The Soloist,” Ayers-Moore founded the Nathaniel Anthony Ayers Foundation, an organization dedicated to using the power of the arts to provide support and guidance for people with mental illness and their families. She travels around the country, telling her story of coming to terms with the reality of her brother’s mental illness and about what it takes to support him in living the healthiest life possible. She is the foundation’s board chair.
On Nov. 5 at St. Paul’s RiverCentre, Ayers-Moore will give the keynote speech at “Stories of Hope — Voices for Change,” NAMI Minnesota’s daylong statewide conference and 40th anniversary celebration. Tickets, which are still available online, are $60 for NAMI members, $100 for nonmembers, and $35 for students. Scholarships are available.
After years at the helm of the Ayers Foundation, Ayers-Moore knows her way around a keynote speech. She plans to focus her NAMI Minnesota talk on the importance of finding support for the difficult task of caring for a loved one with mental illness. Since their mother died, Ayers-Moore has been Ayers’ legal guardian.
“I always like to keynote on what I know,” Ayers-Moore told me, “and what it is like to be a sibling of someone who has had a mental health issue. In speeches like this one, I get to talk about the experience of living with my brother Nathaniel before and after his schizophrenia. I will also talk about how a family member with a serious mental illness pulls all the focus inward around them. Sometimes the rest of the family gets lost in the shuffle.”
The conference, which will likely draw some 250-300 participants, will feature Ayers-Moore’s talk, as well as a closing keynote on the connections between sleep and mental illness by Imran Khawaja, M.D., associate professor of Psychiatry, Neurology and Neurotherapeutics at UT Southwestern School of Medicine.
“We forget how critical sleep is to overall health,” said Sue Abderholden, NAMI Minnesota executive director. With mental illness, quality sleep is key. “Whether you are living with depression or anxiety or stress, we just forget about the importance of a good night’s sleep.”
There will also be as many as 16 breakout sessions for participants, some geared to families of people with mental illness, some for people living with mental illness and others for mental health professionals. Professional education credits will be offered.
“We want to reach a wide range of participants,” Abderholden explained. “We try to have breakout sessions for teens and young adults and one for parents of children. We also have a session that’s more experiential for adults, and lots of opportunities for professionals.”
On the policy front, Abderholden will lead a panel discussion that will update attendees on what happened during the 2016 legislative session and what’s on the agenda for 2017.
The luncheon will feature a celebration of NAMI Minnesota’s four decades of advocacy and an awards ceremony highlighting individuals who have made significant contributions to the state’s mental health community. “It’s always my favorite part of the conference,” Abderholden said.
For Ayers-Moore, one particular NAMI conference memory stands out. Once, several years ago, she brought her brother to the national conference in San Francisco. She even has a video of the event. Watching it reminds her of the power of the event.
“That experience really changed Nathaniel’s life,” Ayres-Moore said. “He had so much emotion during that day. When he found out what the NAMI acronym stood for, at first he said he wasn’t going to come. He doesn’t consider himself mentally ill. But we worked it out, and when he got to the conference, he couldn’t believe how much respect and adoration he received. People were so loving to him. They wanted to hug him get his autograph. He just couldn’t believe it. He’s talked about that day ever since.”
Ayers-Moore said that it’s memories like these that underscore NAMI’s critical importance in the lives of thousands of Americans.
“It’s a community,” she said. “It’s a way to draw people affected by mental illness together. And when we come together and support each other, we are so much stronger.”