In a new book, former state Rep. Mindy Greiling talks about her son’s schizophrenia — and her mental health advocacy

Growing up, Mindy Greiling knew firsthand about the shame and secrecy that often surrounds mental illness. Back in 1958, when her grandmother was sent to Rochester State Hospital after hearing voices coming from her radio, concerned relatives instructed Greiling and her sister not to tell anyone in the neighborhood.

This was an exercise in futility. “It was an extremely close-knit neighborhood,” recalled Greiling, a former 10-term member of the Minnesota House of Representatives. “It really was impossible to keep what was happening a secret, but that’s what we kids were told to do.”

Decades later, in 1999, when Greiling’s son, Jim, was diagnosed with schizoaffective disorder, she knew she was going to handle things differently.

“Right away I had my own initial thoughts,” she said. “It wasn’t shame. Instead, I was asking myself,  ‘Am I going to be strong enough to talk about this, to deal with it, or am I going to just sit here and cry?’”

In hindsight, Greiling now admits that some of her reaction may have to do with timing: “If I had had a chance to sit on this news for months or years, who knows what would’ve developed in terms of my hesitance about speaking out?” But, as a public figure, she said, “I had no choice. I had to speak publicly.”

Jim’s diagnosis was announced to the world with front-page stories in the Star Tribune and Pioneer Press. While the attention added to her stress in the moment, looking back, Greiling said she’s actually thankful that her family’s story went public so quickly. It set them on a course of openness and advocacy that is a hallmark of how they’ve handled Jim’s mental illness ever since.

“Luckily for me,” Greiling said, “I didn’t have time to hatch out secrecy or shame. I was outed right away.”

This month, Greiling took her trademark open and honest approach to the next level with the publication of “Fix What You Can: Schizophrenia and a Lawmaker’s Fight for Her Son” (University of Minnesota Press 2020), her memoir about her son’s struggle and her efforts  to change Minnesota’s legal system to better protect the rights of people with mental illness and their families.

As she sets out to publicize her book, Greiling said her goal is to “increase empathy for people like Jim and our family. One of the themes of the book is advocacy. There is no way we are going to have a better mental health system if we don’t tell our stories … and advocate at all levels of government.”

History of legislative advocacy

During most of the two decades Greiling spent representing the Roseville area at the Minnesota Legislature, she was known for her tireless work on behalf of individuals and families facing mental illness.

She is proud of her efforts. While Greiling had always been aware of the acute struggles of people like her grandmother and was supportive of legislative initiatives to change the state’s mental health system for the better, Jim’s life was the inspiration for her focused efforts.

After her son’s diagnosis, Greiling said, “I started working on mental health legislation wherever I encountered it.”

When Jim was in college, a psychotic incident landed him in a hospital psychiatric ward. Greiling was shocked and frustrated to learn that because her son was legally an adult, his medical team could not update her or her husband about his condition.

Greiling’s first legislative efforts were focused on paving the way for families to be able to learn more about a loved one’s state or plan of care when they were hospitalized for a mental illness.

“I worked on this bill after Jim had been in the hospital,” she said. “Doctors and nurses told me they couldn’t talk to us about his case. Nobody explained why. That was devastating. You’re already reeling and in grief because your son went to the psych ward in an ambulance. Then you are told that you can’t be talked to. I hit the roof.”

After working through her initial anger and shock, Greiling said, “I regrouped. I went to the Legislature and drafted a bill just to say common-sense things like, ‘You need to explain to families about medical releases and offer to have the hospitalized person sign one.’ That was my first [mental health] legislation.”

Another bill was inspired by her own behavior. After advocates criticized Greiling for using the phrase “mentally ill people,” because it puts the mental illness before the person, Greiling went to work to make a change. “My next bill was to put the person first and to say, ‘people with mental illness,’” she said. “We got all the statutes in the state updated to be person-first.”

Greiling also worked on improving Minnesota’s civil-commitment legislation. “I worked with the Treatment Advocacy Center,” she said. Recently, in a report grading all 50 states, the center gave Minnesota an A+ for its civil commitment statute.

“We would’ve gotten an F if I hadn’t made the changes I made in 2001,” Greiling said. She added that her work only got the state to a C+ level, but work led by NAMI and legislators this year earned the state its current exemplary grade.

She worked to take the word “imminent” out of statutes regarding civil commitment, and authored a bill that required the state’s hospitals to provide new parents with information about postpartum depression before they took their babies home. With the support of her peers, Greiling also formed the Legislature’s Mental Health Caucus.

“This caucus was House, Senate, Republican, Democrat,” she said. “On the topic of mental illness, we were consistently bipartisan.”

This “all hands on deck” approach, Greiling believes, has made it possible for Minnesota to become a leader in providing funding for the state’s mental health system. “By truly working together,” she said, “we were able to make real, significant change.”

‘Stories build empathy’

Greiling isn’t trained as a writer, but she’s always liked writing. When she decided to pen a memoir, she took classes at The Loft Literary Center. Though she was proud of her legislative accomplishments, she felt that there was still more she could do to help increase understanding and support for people like her son.

Mainstream society is slowly moving toward a greater openness around mental illness, Greiling said, but she believes that people with serious and persistent mental illnesses like schizophrenia are often left out of the picture. It’s a messy disease, she said, one that makes other people feel afraid and uncomfortable. She wants to change that attitude.

When she wrote a speech to present at her book’s launch, Greiling said, “I created a slide that says, ‘stories build empathy.’ That really was my overarching goal with writing this book — to help readers find empathy — because I think there’s not enough empathy for people with serious mental illness.”

While most people now feel free to talk openly about mental illnesses like depression and anxiety, Greiling continued, “I think still we don’t want to talk about the really serious stuff. Even bipolar has made it into the conversation because there are some public figures who have been open about their diagnosis. But schizophrenia just doesn’t clean up as well.”

She hopes that by telling her family’s story and outlining the many struggles Jim went through on his road to stability, more people will gain understanding and sympathy for people with schizophrenia.

“Generally speaking, when you are doing policy or designing the mental health system there are not as likely to be people with schizophrenia who are represented. Our mental health system is designed to work for other people.”

Greiling also wanted her book to provide an opportunity for her family to heal and learn from their painful past. While Greiling was writing the book, Jim reviewed and commented on each chapter as she completed it. Though she said the process was difficult at times, Greiling also found it to be therapeutic.

“I involved Jim from the beginning,” she said. “I was worried that he would be mad about it. I thought, ‘If he’s going to object and it creates a rift I can’t go on.’”

The two held their review sessions at coffee shops. “Every time I had a chapter he would take out his pen and mark it up,” Greiling recalled. “He gave letter grades for how much he liked a chapter. I found he enjoyed it very much.”

Jim’s participation made the book better, Greiling said. And the long process of writing and review was good for their relationship. It also helped her to write out her feelings, to remember her reactions to Jim’s different struggles, and to see them from his perspective.

“There are things in the book that wouldn’t be in there if he and I hadn’t discussed them first. I needed to talk to him about what was going on in his head. The book was cathartic for him too, and my whole family, especially my daughter.”

A different kind of happy ending

Most people like reading books that have happy endings, but Greiling believes that when it comes to schizophrenia, happy endings can be hard to come by.

As she finished her book, she said, “Jim wasn’t doing very well at all. He kept getting worse and worse. I was hoping for a classic happy ending, but it didn’t seem like that was going to happen.”

Case in point: As Greiling was wrapping up the book, Jim, who’s struggled with substance abuse for most of his life, burglarized her house with his girlfriend in a search for drug money.

[cms_ad:x104]“Every time something would happen it ended up being good material,” Greiling laughed, adding that she included the story in the book’s epilogue. At the time, Jim and his girlfriend were living in an apartment, their addictions in full swing. Then, last November, after Greiling’s book was with the publisher, Jim broke up with the girlfriend.

“She was his trigger for drug use,” Greiling said. Though Jim was on probation for burglarizing his parents’ house, “He asked if he could come and stay with us. He was too lonesome in his apartment.” Greiling and her husband, Roger, invited him to move into their Roseville home. Then COVID hit, and Jim’s still there most of the time. He still keeps up the apartment.

Greiling sees a good side to this development: “He’s sober,” she said of her son. “He works for NAMI two days a week for a couple of hours. He has a friend who lives near us who also has schizoaffective disorder, and he has a few other good friends he spends time with.”

While NAMI Minnesota provided key support for Greiling and her family at the beginning of their journey with Jim’s mental illness, she’s stepped back from the organization in recent years. “We gained so much from their ‘family-to-family’ classes,” she said. “But they are very geared to people who are new to mental illness. After some time it felt like I could teach the classes myself.”

Then, not so long ago, Greiling discovered that many of the state’s NAMI affiliates struggle to maintain membership or offer services for new members. She got involved with NAMI Ramsey, her local affiliate, and eventually became the board president. The new role feels right to Greiling, who needed a project on which to focus her inestimable energy. She’s busy building the organization’s board of directors, growing membership and focusing the group’s efforts on facing discrimination against people with mental illness head-on.

Though she believes that people’s attitudes about mental illness are improving, Greiling said that even among people with loved ones who struggle with their mental health, “that shame is still alive and well today.” She’s determined to keep working to change those attitudes.

Greiling’s own family has chosen to not feel shame about Jim’s schizophrenia and its impact on their lives. And somehow, after years of struggle — and the publication of a book — she said they might actually be experiencing a peaceful period of wellness and calm. Time living at home with his parents — combined with consistent medication management — has helped Jim achieve the stable footing he’d been missing for years. And the book project has brought everyone closer together.

Greiling knows she can’t guarantee that this peaceful feeling will be around forever, but for now she’s happy just living in the moment.

“The Greilings are on a much better footing than we were not so long ago,” she said. “Right now we’re living our own kind of happy ending.”