They’re going to tell their stories of mental illness, the old fear and pain and unfair feelings of shame be damned.
One reason is that they can’t offer a proper requiem for NAMI-KC — the National Alliance on Mental Illness of Greater Kansas City — without telling.
Funding problems and staff health issues have compelled NAMI-KC’s small staff and board to shut down the 36-year-old chapter that launched a nationwide service for families.
That’s why you’ll hear how it was NAMI that Joe and Heidi Custin called for help from behind their locked bathroom door when their 20-year-old son stormed on the other side in the grip of his illness.
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Sybil Noble will tell how she had slipped back into illness and defiantly disappeared, and how NAMI helped her frightened husband get past hospital privacy barriers to locate her and see that she was safe.
Co-founders Joan and Jim Smith will tell how they started NAMI when their blind hopes for a cure for their son led them on a desperate search for other families in mental illness’s anonymous sea.
And there is another reason to tell.
Not only did NAMI help families find one another, it ignited their courage to step out of the dark so that families like theirs would not have to starve for help and understanding.
“NAMI gave us our life back,” Joe Custin said.
It couldn’t cure their son, Adam, of schizophrenia. But it allowed them all to face it with grace.
For about 2 1/2 years, the disease gave them a reprieve. A blissful time when the medications worked and they dared imagine a fruitful life for their “sweet son.”
But when the disease roared back, they left behind the old explosions and bitter fights, able now to wrestle with it openly, knowingly and lovingly.
In a bit of dark humor, Adam even wrote scripts for his parents to yell at the voices in his head that tormented him — the voices of multiple Josef Stalins living inside him.
“He had us shout at them, in words I don’t want to say, to shut up!” Heidi Custin said.
That last time around, Adam stayed with his medications and not the deadly drugs off the street. And though the disease destroyed his mind, the family held together in love, patience and empathy to the end.
NAMI made that possible, his mother said, “and that was a gift.”
‘Not a retreat’
Some things are hard for Joan and Jim Smith to talk about.
Like those desperately lonely years in the late 1970s after the state university in Rolla, Mo., out of the blue called and told them to come get their suddenly sick son, Mark.
Jim Smith’s work on oil refineries took him to far-away shores, often leaving Joan Smith alone with an angry, out-of-control son and four other adolescent children at home.
It is also hard to talk about how their chapter of NAMI, which they founded in 1980 to save themselves and others like them, has come undone after all these years.
“Where will (families) go when they need help?” Joan Smith said.
If there is some comfort, it’s that for now the support groups and classes that NAMI-KC provides are carrying on because the volunteers who run them are continuing to meet. The mental health training for police officers that NAMI championed goes on.
In Jefferson City, NAMI’s statewide director, Cindi Keele, called the Kansas City chapter’s shutdown a “transition, not a retreat.”
The state organization will support Kansas City services, she said, while NAMI looks for a way to bring back a local office.
The Kansas City office had been struggling with its finances, a difficult time made worse because key members of its small administrative staff were in ill physical health.
Nearly 30 percent of NAMI-KC’s revenue came from a share of the Jackson County Community Mental Health Fund tax levy. The executive director of that fund, Bruce Eddy, and its staff had grown increasingly concerned that NAMI-KC needed to reorganize.
“As a friend and supporter, it was frankly heartbreaking to watch this struggle,” Eddy said in an email to The Star.
For several months the fund intensified communication and oversight, he said, “hoping to help move the focus beyond day-to-day survival toward making the admittedly difficult business decisions needed to remain open.”
But NAMI-KC was ultimately dropped from the fund.
“I continue to believe,” Eddy said, “that reorganizing would be the best course of action for the organization and the community.”
It’s mostly out of the hands of its founders, now in their 80s and many years past their son’s death from brain cancer in 2003.
The fresh frustration over Kansas City’s closing contrasts with a rich legacy that now includes nearly 1,000 NAMI state and local chapters reaching every state, including 12 in Missouri, 14 in Kansas, 37 in New York, 64 in California, six in Alaska and three in Hawaii.
None of that existed for families in 1979. Doctors unloaded diagnoses on the Smiths for their lost, angry, swearing son, conditions they’d never heard of — schizophrenia, maybe, or schizoaffective disorder, or perhaps bipolar disorder.
First they stumbled around, Jim Smith said, looking for someone to tell them “the cure.”
Then they suffered alone, with no help in how to cope.
Are there any other families out there? Joan Smith wanted to know.
Yes, said Shirley Fearon, the director of Research Mental Health Services in Kansas City, which would become ReDiscover. There were others. And she helped the Smiths connect with some of them.
By 1980, the Smiths had met with similarly distressed families in St. Louis and Madison, Wis., and they created the first local NAMI chapters as well as a national organization, registered in Jefferson City.
In those first years, the Smiths gathered information for pamphlets that Jim’s business printed for him and that they put together in their basement.
The word spread and chapters began forming, even beyond the Smiths’ knowing. In 1990, Jim’s work took the family to Baton Rouge, La., for two years. Soon after they moved in, he looked in the Baton Rouge phone book. And there it was, a NAMI chapter.
The KC chapter soon had funders, an office, a staff and a director — a post Guyla Stidmon has filled for years — becoming a pre-eminent resource for families.
Joan Smith rests her head in her hands. Jim Smith stares past her out their mobile home’s window. The work can’t stop now, he says. So much has happened since 1980, but there is still so much to be done.
“So many members’ kids have killed themselves, but they can’t tell anyone,” he lamented. “Why? Because they’re ashamed? No. It’s because people are still ignorant of the facts of mental illness.”
Help for families
You wouldn’t know it now, but Sybil Noble has been living with schizoaffective disorder some 36 years, since she was about 15.
Medications, forever with their frustrating side effects, are serving her as well as she could hope. She’s at ease in her home with her husband, Jerry Armstrong.
She’s back at work on her art, at the moment pasting mannequins with scraps of words, emotional to her, that she cut from magazines during some of the many years of sitting in hospital and clinic waiting rooms.
But she knows how tenuous stability can be.
So sure was she one time that she was surrounded by police, she stepped out of a Kansas City restaurant and stood spread-eagled, hands in the air, shouting at them to arrest her. But no one was there.
She and Jerry have been married 26 years, having once started and operated a drop-in center for “consumers” of mental health services they called Ark of Friends for people who know how hallucinations, delusions or unbearable depression can happen.
NAMI picked up that role in the community, adding consumer support groups to its cadre of family support groups.
Noble worries that for the Missouri side of the state line, Kansas City “is losing the last mental health advocacy group.”
“I don’t know where people are going to go.”
Stidmon and the NAMI staff and volunteers were also powerful advocates and problem-solvers, Armstrong said.
“Guyla helped me personally,” he said, that day Noble had disappeared. She needed to be in a hospital, but Armstrong had no way of finding out whether she’d ended up in one or was in danger.
Stidmon persisted and found her, he said. “I knew my wife was safe.”
‘Never give up hope’
The phone call, Heidi Custin remembers, lasted two hours.
On the other end of the line was Jennifer Boyden, the NAMI-KC staffer who answered Custin’s desperate call for help.
Adam’s condition was turbulent, with growing and frightening symptoms that mental health professionals in the hospitals described in ranges from crippling depression to different psychoses. He was drugging himself in many different ways and his parents couldn’t stop it.
She needed to talk about it.
Boyden helped them meet up with a support group and then enroll in NAMI’s Family-to-Family instructional course. There they learned from a curriculum “written precisely for what we were going through,” Joe Custin said. All at no cost, run by volunteers.
That was where they realized, in a heart-stopping exercise of checking off symptoms, that Adam was clearly suffering from schizophrenia. Their sweet son, his brilliant mind and an incurable disease.
“We were terrified,” Heidi Custin said.
They anchored themselves in NAMI’s creed, its “Principles of Support.”
We will see the individual first, and not the illness. … We recognize mental illnesses are brain disorders. … We find strength in shared experiences. … We reject stigma in ourselves and others. … We forgive ourselves and reject guilt. … We expect a better future in a realistic way. …
We will never give up hope!
They hold onto it now, even though Adam’s struggle ended when he committed suicide at 24 on Christmas Day 2015.
The Custins, like many other NAMI families, carry on the work that Jim and Joan Smith started. Joe Custin was trained and teaches a Family-to-Family course. They have served on NAMI-KC’s board, Joe Custin most recently as its president.
“It gives you a drive to do something,” Heidi Custin said, “rather than sit and watch things happen to you.”
Their son deserved love, she says. The families deserve empathy and understanding.
She knows the way it was, and how it still is, she said, where “fingers get pointed” at the family with the sick child, “and people think, ‘How are you failing as a parent? … Who creates such a child?’ ”
So you tell the world about your son.
“You get out,” she said, “and you fight that stigma.”
A ceremony to recognize NAMI-KC and support Mental Health Awareness Month will start at 8:30 p.m. Tuesday at the Loose Park Pavilion, 5200 Pennsylvania Ave.