Mental illness took our son, so we aid others

At midday on June 3, 2017, my wife Mariel asked me if I knew where our 22-year-old son Louis was. I did not.

While it wasn’t unusual for Louis to take a short walk from our rural home in the Sierra foothills, we knew he was becoming increasingly psychotic and facing a potentially dangerous situation. We reported his disappearance to the El Dorado County Sheriff ’s Office, but we would never see our son again. His remains were recovered three months later from the nearby river.

Born in Miami, Louis was the youngest of our three sons. He grew up happy and healthy in a stable and loving home. We moved to California when Louis was 8. He made friends easily, took part in sports and did exceptionally well at school. In high school, he won math and social science awards, was on the school track and cross-country teams, and was in the madrigal chorus. But at 19, Louis’ brain chemistry would radically alter.

In retrospect, Louis probably showed signs of mental illness in late high school but, like many other families, we didn’t recognize the initial symptoms. Nationally, 50 percent of lifelong cases show symptoms as early as age 14, but on average it takes eight to 10 years before symptoms are diagnosed.

When we noticed that Louis had become introspective and seemed mildly depressed, we sought counseling, which helped a little. But his condition changed rapidly after leaving high school. In early 2014, he began expressing bizarre beliefs, throwing out possessions he had loved and exhibiting manic, repetitive behavior that would lead to auditory and visual hallucinations. Later that year came the first of four hospitalizations our family would experience in less than three years. His diagnosis was schizo-affective disorder with bipolar I.

We knew very little about mental illness generally and even less about schizo-affective disorder specifically. As we learned more, the cruelest aspect of Louis’ illness became his lack of insight into it. Louis never believed he was ill. He believed he had fallen into a medical system controlled by an evil empire of Big Pharma. It led to an all-too-common pattern of temporary therapeutic compliance and eventual rejection. At the time of his death, Louis had again stopped his medication.

Living with someone with a mental illness changes your perspective. Suddenly, I was thinking about how easily police officers could misunderstand Louis’ condition. We’re lucky he wasn’t violent or dangerous because public services, unfortunately, aren’t always equipped to deal with mental illness. Since his death, I’ve been volunteering with the National Alliance on Mental Illness to raise awareness of the resources available to communities and families in need. In our small community, 7 percent of people live with a serious mental illness, about the same as the national average. Yet, according to the National Institute of Mental Health, only half will get the treatment they need, creating extra challenges for their loved ones and caregivers.

This is why a close family friend has established a project in memory of Louis. The project is using the Johnson & Johnson-sponsored public health crowdfunding platform CaringCrowd.org to raise awareness of the NAMI Family to Family program in El Dorado County. Our family will be matching all donations to this project. We weren’t aware of this program during Louis’ life, but I wish we had been. I know now that its free and evidence-based course for families, caregivers and friends would have given us the tools to deal with the unsettling situations that can arise with people with mental illness. NAMI’s resources would have also assisted us during the onset of Louis’ symptoms, helping us identify the warning signs of mental illness.

I tell our story because I want to make sure other families know that they are not alone; that there are programs, resources and other people available to help them.

Mariel and I will always celebrate our son’s first 19 years and mourn his last three. We will remember his desire to be fast and graceful on his snowboard. We will always be proud of his intellect and his intellectual curiosity. We’ll cherish our shared love of music, and the keyboard compositions and recordings he left behind. One year after his death, we still ask why and what more could we have done.

We don’t know if Louis intended to run away last June, even though he’d gone missing twice before. This time was different: We had moved somewhere more rural and he made no preparations before his disappearance as he had before. The last day he was seen, and presumed drowned, was a beautiful day at our community park near the river. As he moved farther downstream, unknown to him and us, the river became dangerous. A week later, a cadaver dog found his clothes. The previous winter’s record snowfall kept the river high and fast through much of the summer until it finally released our son on Labor Day.

The proximate cause of his death was drowning, but in fact, our son had lost his battle with mental illness. He will be missed and loved forever.