If Tyler Skinner was going to live his life in a fight against schizophrenia, it would not — by God — be here, he told himself. Not in the Kansas state mental hospital at Osawatomie.
He was 20 then, two years ago, launching himself into the heart of the nation’s struggle to intercept mental illness at its most critical, but most elusive, point in people’s young lives.
It took fear of the troubled state hospital to light Skinner’s fire and inspire his grasp for new treatment strategies.
Never again did he want to fear the fights he saw. No more fearing the patients, men and women, sneaking through the halls.
“I hit that point where I knew my schizophrenia was going to be with me the rest of my life,” Skinner said. “It had to sink in. I wanted the help.”
There he was, like so many of the one in five American teens or young adults who experience a debilitating mental disorder.
20 percent of youths ages 13-18 live with a mental health conditionSource: National Alliance on Mental Illness
Most people with mental illness experience it first during those years. Indeed, the most critical time — and hardest time — to reach people who are vulnerable to severe mental illness is during their teen and early adult years.
But they might not seek help for several years, and relief efforts are hurt by a lack of Medicaid for young people who are often uninsured.
“The longer the symptoms go untreated, the greater the risk,” reads a report from the National Institute of Mental Health.
One psychotic break increases the likelihood — and intensity — of another.
But there is hope in new efforts that are aimed at early intervention.
This is why Skinner is determined to hold onto his new life here, in the community work of Wyandot Center’s young adult and Early Intervention Team program.
It is why survivors of mental illness are creating Active Minds support groups on college campuses.
It’s why Steve and Karen Arkin of Overland Park, whose son died by suicide at college, are creating a Speak Up effort to raise awareness and developing an app to ask for, or send, help.
It’s driving state efforts to require mental illness awareness training among teachers, and to seek Medicaid expansions to increase treatment options for such a mercurial, stubborn and often-uninsured age group.
Encouraging research from the National Institute of Mental Health is showing “it is entirely possible to halt psychosis” in many cases, said Cindi Keele of the Missouri National Alliance on Mental Illness.
“We can stop the trajectory” into debilitating illness, she said. “Young people can manage those symptoms and go back to school. They can go back to their jobs.”
Leaving the cocoon
Andrea Lockett seemed to float into the healing circle of art.
Her fingers played across the surface of swirling images that she and her new friends have been drawing under the care of the Wyandot Center’s Early Intervention Team.
Not at home. No longer cocooned in numbing isolation with her illness.
“I had anger issues,” the 21-year-old said. She once spent six months in Osawatomie.
“Now this is my life. I want to get out of the house and have fun.”
The caseworkers and therapists in programs like these struggle against the nature of teens and young adults who would sooner disappear alone than step out into the current that would help them.
It’s a circular mural, explains the studio coordinator, Tiffane Friesen-Masimbi. The energy radiates like light from the center, or ripples like water. It has a pulse, she says.
Other days they meet to meditate or stretch their bodies. Some days are for sports and games. Some days are for therapy sessions.
“I like lying on the ground, taking deep breaths and not thinking about anything,” said Tevin Platt, 20. “It eases my mind.”
Visits by police officers and 1 1/2 difficult years in foster homes brought him and his emerging schizophrenia into contact with the support group.
If only they’ll come and share this healing together, there is motivation to stay on complicated medications, the counselors say, to blend in again and hope again.
“The hard part is that many (young adults) won’t acknowledge illness,” said Jennifer Krehbiel, team leader of the Early Intervention Team.
“A lot of families don’t know what to do either,” she said. Parents will want to deny the illness as much as their child. Early symptoms can look a lot like adolescent defiance.
8-10 years is the average delay between onset of symptoms and interventionSource: National Alliance on Mental Illness
In the program’s first year, leaders sometimes have spent three months or more returning to some of the people they want to help, trying to get them in the door.
“At that age, you’re wanting to fit into your peer group,” she said. “You downplay (the illness). You don’t talk about it. You’re going to take care of it on your own. You stay with your friends and wait for something big to happen.”
Sharing secret pain
All that Joe Pickert’s new friends saw at the University of Kansas was the fleet, lean runner.
They didn’t know how much weight he’d lost. To hear them talk, they envied his vigorous health.
What they didn’t see was the anorexia eating him from the inside. They didn’t see his dry, cracking heels, his brittle nails, the colds, the nosebleeds. They didn’t know his running had become an isolating, psychotic exercise.
“I had no vocabulary to talk about anxiety,” Pickert said. It seemed no one did, whatever their ills. “An underground epidemic,” he said.
Only when he suddenly could not sleep anymore did he go home to see a doctor.
It’s better to be talking about it, he said.
The Active Minds chapter the 20-year-old helped start in his renewed academic career at Johnson County Community College hopes to help all students open up about mental health.
Jane Gray, 19, is doing the same at the University of Missouri-Kansas City with a new Active Minds chapter.
At first she kept her hospitalization for severe depression and self-harming during high school a secret between her and only her closest family and friends.
“I was good at putting the mask on,” she said. “I didn’t know anyone else had these problems.”
50 percentof students age 14 and older with a mental illness drop out of high schoolSource: National Alliance on Mental Illness
Her liberation came after she saw a story in her hometown, St. Joseph. A 19-year-old woman, Colby Harvey, was going into schools and telling of her fight with mental illness.
Gray found Harvey on Facebook and determined she had to follow the same path.
“I was almost relieved,” Gray said.
Once Gray spoke out, they came to her — friends and strangers with their secret pain.
Now she could see how many teens couldn’t tell their parents. Or how many tried only to see their parents shelter themselves in disbelief.
Nationwide, more than 1,100 college students die by suicide in a year.
“A lot of people are very lonely,” she said. “Suffering in silence.”
Jason Arkin of Overland Park was one of them. He killed himself at Northwestern University in Evanston, Ill., in 2015.
His parents, Karen and Steve, know that Jason called the campus clinic for help and learned there was a waiting list. The clinic gave him the numbers to other resources and urged him to call them, but he did not.
It should be easier to get the community to work together, Steve Arkin said.
Let sharing be easy and widespread, he says. The foundation he and his wife started and the Shuchart Foundation for Mental Health Awareness are developing an app that taps resources. It would connect someone in mental distress to a resourceful ear, or allow someone close by to seek help.
“Are we talking to each other?” Steve Arkin said. “Are we sharing ideas? Are we identifying who’s at risk?”
Breaking the cycle
Here’s another problem. An unfortunate intersection.
Mental illness most often emerges before an individual is 25 years old, hitting smack at the point in people’s lives when they often don’t have much money and might be uninsured or underinsured.
75 percentof all lifetime cases of mental illness begin by age 24Source: National Alliance on Mental Illness
They typically have not yet been identified as having a disability. And because neither Missouri nor Kansas has expanded Medicaid under the Affordable Care Act, treatment options dry up.
“They will be in a Saturday night crisis that may be resolved, but there is no follow-up,” said Rick Gowdy, director of the Division of Behavioral Health at the Missouri Department of Mental Health.
“Then two weeks later, they are back in the ER,” he said. “We are spending a lot of money on cop calls, courts, incarceration and emergency room workups, but all this money does not help break the cycle.”
70 percent of teens in state and local juvenile justice systems have a mental illnessSource: National Alliance on Mental Illness
Missouri is seeking a waiver with the federal Centers for Medicare and Medicaid Services by which $7 million in state funding would trigger some $12 million in matching federal funds in expanding Medicaid for these vulnerable young people.
Without it, many are headed to a lifelong dependency on disability income, said Mark Stringer, director of the Missouri Department of Mental Health.
The Mental Health Crisis Prevention Project, expected to be approved for a waiver later this summer, would aid some 2,400 young Missourians over the next five years.
They would be connected to therapy, case management and employment assistance that can lead to independent living.
“This is a path to Medicaid and then a path off of Medicaid,” Stringer said.
“They (people with mental illness) want to work,” Gowdy said. “They want to get a job. They want to be like anyone else.”
Good health is radiating like the ring of color and the paper flowers of the mandala.
Andrea Lockett will be earning her high school diploma through a special program in the Kansas City Kansas Public Schools.
She wants to continue in college, learn business and be an event planner, she says. And she can see it now.
Tevin Platt is taking classes in a technology school. He feels employable. He’s learning welding.
And he’s smiling. Telling jokes. Things he just didn’t do during his retreating years in high school, he said.
They feel saved, Tyler Skinner said.
He’s working at a food shop in Kauffman Stadium while studying business and marketing at Kansas City Kansas Community College.
“I want to be able to tell people this,” he said. “You can control this disorder. I can still do what I want to do.”
Active Minds: www.activeminds.org
Speak Up With Steve and Karen Arkin: Facebook
Wyandot Center: www.wyandotcenter.org
Johnson County Mental Health www.jocogov.org
Truman Medical Centers Behavioral Health www.trumed.org/ behavioral-health
Swope Health Services www.swopehealth.org/what-we-do/behavioral-health