Ripples of Hope

NAMI Day on the Hill Part 1

Earlier this week I had a big day here in Iowa. I was honored to be one of the keynote speakers for the NAMI Iowa Day on the Hill event, which I co-delivered with my dear friend, fellow Iowan, and fierce mental health advocate, Leslie Carpenter.

Our pairing felt serendipitous, brought together by our mutual friend, Bethany Kohoutek, the NAMI Iowa Director of Marketing and Communications, and our interconnected stories of how we became involved in mental healthcare reform melded perfectly.

I’m pleased to share my speech with you here.

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Ripples of Hope: Community, Connection, and Change for Iowa Mental Health

I’m so honored to be speaking to you all today and to have the opportunity to share my story of how I became involved in mental healthcare reform in Iowa.

My story began on April 6, 2017 just before midnight when a Polk County Sheriff’s deputy knocked on my front door to ask my husband and I some questions about our longtime neighbors across the street, the Nicholson family. It quickly became apparent something terrible had happened in our normally quiet rural neighborhood outside Bondurant.

We would come to learn that earlier that cool April evening, Mark, Charla, and Tawni Nicholson, a father, mother, and their 24-year-old daughter, had been shot to death by their twenty-year-old son and brother, Chase, a young man with undiagnosed schizophrenia in the grips of a severe psychotic episode possibly induced by the wrong medication. In the days following the tragedy, I listened to interviews with extended family members of the Nicholsons, and their stories of how Chase had struggled with serious mental illness for most of his life, and how hard his family, particularly his mother, had tried to get him adequate help, only to face one obstacle after another. Just days before the tragedy, Chase had attempted suicide and told ER staff he needed hospitalized, but that day there were no psychiatric beds available in the entire state of Iowa, and he was sent back home with his parents.

The accounts of the Nicholson family’s challenges to get acute help for their incredibly ill son struck a deep nerve within me. These were my neighbors, my friends, and yet I’d had no idea of the painful struggles they’d likely been dealing with for years, and also of how deeply broken our mental healthcare system in Iowa had become and how badly it had failed Mark, Charla, Tawni, and Chase. While I couldn’t help the Nicholson family, I still felt compelled to do something, so I did what I know how to do best: I wrote about it. I started with a guest contributor column for The Des Moines Register titled “When Iowa’s Mental Health Crisis Lands Next Door” and chronicled the details of the case.

I wrote a follow up column a month later profiling three Iowa families also struggling at that moment to get adequate mental healthcare for a loved one, adults and children both. As part of my work on that piece, I posted a comment in a private Facebook group I was in at the time, and asked if anyone had experiences with the Iowa mental healthcare system they would be willing to share with me for an article. A woman responded by Direct Message that she and her husband would be interested in talking with me about their ongoing struggles to get adequate care for their adult son who suffers from a serious mental illness. I interviewed the couple and wrote a profile of their journey through our broken system, and after the article was published, I stayed in touch with the woman, eventually becoming great friends with her. And that woman was Leslie Carpenter, who now shares the stage with me today as one of our state’s leading mental healthcare advocates.

In 2018, one year after the tragedy on my street, Chase Nicholson pled guilty to the murders of his father, mother, and sister, and started serving three mandatory consecutive life sentences in the mental health prison in Coralville. But I couldn’t forget about the nice little boy who would sometimes play at my house with my kids while his older sister babysat, and decided to write him a letter. In it, I told him I used to be his neighbor and knew him as a child, and that I was a writer and had done some writing and advocacy work about mental healthcare reform. And also that I liked writing letters, so I was happy to become a pen pal if he was interested.

Right away, Chase wrote back. He said, in part:

Dear Kali,

Thank you for writing me. I don’t get many letters, so I’m grateful for yours. I remember you as well as your boys. You have a very nice family. I appreciate you getting involved with mental healthcare, especially in our state. I am doing better at this moment. I have survived two serious suicide attempts since my imprisonment but feel mostly stable now. I would enjoy being pen pals with you and think it would be good for me.

Write again soon,

Chase

We’ve been communicating ever since.

As I’ve gotten to know Adult Chase over the years through many letters, emails, phone calls, and eventually in person visits, we’ve built a genuine friendship, and now he feels like a family member. Today, he’s accurately diagnosed and medicated by a prison psychiatrist, though that is absolutely the extent of the “mental healthcare” he receives in prison. As he said in that first letter, he’s mostly stable but definitely still struggles with his complex diagnosis of schizophrenia and bipolar disorder. He’s incredibly bright and artistic, but also one of the most tortured souls I’ve ever met as he’s haunted by the memory of what he did during his psychotic episode. Whenever he’s experiencing an acute, serious mental health episode and needs to talk through it, he sends me an email with the subject line “988”—the national Suicide and Crisis Lifeline number.

As I’ve learned more about the complexities of his serious mental illness, I eventually came to a stark realization:

Back in 2017, without the long-term in-patient treatment he desperately needed, Chase and his family never had a chance. They were undoubtedly overwhelmed, frustrated, and in over their heads with a son who was far more ill than they and he even realized, or could help on their own with so little support. They were probably just getting by, doing the best they could to manage their situation. It’s been through Chase’s story that I’ve learned how critical gaps in our system are hurting so many Iowa families, and sometimes, in rare extreme cases, even costing lives.

After about a year of exchanging letters with Chase, I realized there was even more I could do through my unique relationship and experiences with him, in addition to writing about it: I could get involved in working to change mental healthcare legislation by sharing his story.

So five years ago I came here, to my first morning session for NAMI day on the Hill. I knew nothing about legislating, lobbying, house and senate files, or funnel week. All I knew how to do was tell the story of what happened in my neighborhood. A quiet, rural street that could’ve been anywhere in Iowa, and why this issue has to matter for everyone. Mental healthcare didn’t directly affect my family at that time, and yet I was still seriously affected by it just because of the proximity of my house. It’s not a private family issue anymore. It’s everyone’s issue.

Luckily, NAMI knows what they’re doing, and I literally learned how to become a lobbyist that morning during the training sessions, just as we’re doing today, and I went to the state capital that afternoon armed with my helpful little NAMI cheat sheet, feeling nervous and very out of my comfort zone. But each time my legislator came out to talk to me, I just told them the story of why I was there, of what happened to my neighbors. I had the unique perspective of tracing the critical gaps in our system directly to a family for whom those gaps had catastrophic consequences.

And to my surprise, the legislators listened, because that’s the power of personal stories. They make a general and sometimes abstract issue instantly personal. There’s no debate or argument with someone sitting in front of you sharing a powerful, personal story. It was the first time in my life I saw and understood how an average person can and does create real change in communities and governments. And while we’ve made progress along the way, I’ve also discovered that progress and change is slow, and requires patience, dedication, and tenacity. But we don’t have to do it alone.

In addition to learning how to lobby and becoming a mental healthcare activist, I also found an amazing community of support through NAMI, though Facebook groups, and through incredible people like Leslie, who has taken more than one phone call and email from me to answer questions for new articles, and offer advice for not just Chase, but now for my own struggling, mentally ill family members.

It’s been a six-year journey of community, connection, and change for me, and despite the work ahead of us, I still believe in Leslie’s mantra “ripples of hope,” and know that personal stories have great power. If there is a legacy left behind by the Nicholson family, I believe it’s this. The inspiration for advocacy, community, and believing that change is possible.

With that said, I’m proud and honored to turn the microphone over to my great friend and fierce fellow advocate, Leslie Carpenter. ~

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Next week Part 2: What it’s like to lobby state legislators as a private citizen.

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To follow more of Leslie’s ongoing advocacy work, you can check out the Iowa Mental Health Advocacy website.

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The Iowa Writers’ Collaborative

I’m a proud member of the Iowa Writers’ Collaborative. We’re a group of writers from all around the state and contribute commentary and feature stories of interest to those who care about Iowa. Readership and paid support helps keep us going!

Are you a writer or interested in learning more about the craft of writing? Check out The Okoboji Writers’ Retreat, part of the Iowa Writers’ Collaborative, now open for registration!