Editor's note: This story is part of a semester-long collaboration of nine senior journalism students called Project 573. Now in its second year, the project lets students with different journalism backgrounds (print, photojournalism, radio, television and strategic communication) work together to shed light on a topic that doesn't get much attention.
This year's topic is mental illness in mid-Missouri. People living with mental illness face a harsh reality. Stigma surrounds disorders and diminishing resources make help harder to find. While much of society ignores the problems, dedicated individuals work to fill the gaps.
An Unsung System tells the stories of these individuals. In upcoming weeks, you will find many of the stories in the Missourian, as well as on KBIA and KOMU. The entire project can be found at www.unsungsystem.project573.com.
JEFFERSON CITY — When they call, they hear her voice. Slow, deliberate and warm.
Some call for the first time. Others call every week. The voice remembers their names. It remembers their struggles.
Karren Jones answers the National Alliance on Mental Illness Missouri phone line in Jefferson City twice a week. It’s called the WARMline, and it’s meant to help encourage and support those who live with mental illness.
Jones always answers the same way:
“Good morning. This is NAMI Missouri.” She says Missouri like Missou-rah.
Some call for information about a particular disorder. She lives with four: post-traumatic stress disorder, major depression, schizoaffective disorder and dissociative identity disorder.
Some call for help with a problem or to share a recent success. Jones knows what to say — she’s found stability after years of struggle.
Jones has hit rock bottom.
She has worried about where to find treatment and how to pay for medication.
She has felt the sting of the stigma. Encountered whispers of “There’s the crazy one.” Fought the assumptions that she is dirty, stupid and someone to be afraid of because she lives with severe mental illness.
She has wondered how to get from Monday to Friday, to survive each day.
On a recent Wednesday morning, she talks to one of her regulars, then shares a mantra she’s embodied her whole life:
“Keep on keeping on.”
The road to recovery
It’s 1988. One minute Jones is home, the next she finds herself shopping in a mall.
She doesn’t know when or how she got there. She doesn’t remember what door she used. She doesn’t remember what shops she visited. The past three hours are missing from her mind.
She feels panic and confusion. Her daughter will be home from school soon and she doesn’t know where her car is.
She wanders the parking lot until a security guard helps her find it.
Jones struggles through each day with four severe mental illnesses. She doesn’t have any friends. She’s quit her job as an intensive care unit nurse because she hallucinates, loses time and suffers from depression. She is erratic about taking medication that is supposed to help — she can’t accept that she is sick.
She doesn’t know her way around town. She doesn’t know where her next paycheck is going to come from or how she’ll keep a roof over her kid’s head. She’s scared and she’s alone.
Jones has come a long way from that day in 1988 when she found herself wandering a mall by herself. A long way from the months she was homeless and lived at a Rape and Crisis Service shelter with her daughter. From the years she was unable to work full time and couldn't find treatment that worked for her.
Today, she is a WARMline responder, mentor and speaker for NAMI Missouri, an affiliate of a national organization that aims to spread awareness about mental health, primarily through educational classes.
But while Jones has triumphed within the system — she has leaned on many government programs and advocacy groups on her road to recovery — she’s also triumphed in spite of it.
She succeeded because of her own personal strength and a relentless dedication to seek help when she needs it. She succeeded thanks to individuals who provided a safety net when the system failed to.
She succeeded in spite of a world that often treats people with broken minds differently than those with broken bodies, that is slashing budgets and cutting resources essential to those with mental illness.
She’s become part of a network of mental health advocates who, for better or worse, take care of their own.
Jones began volunteering at NAMI in 1989 after mental illness forced her on disability leave from her job as an intensive care unit nurse. By 1990, she had become a paid employee through an employment program that allows people on disability to work without losing their health-care coverage.
Now, she works two days a week as a volunteer because she’s old enough to collect Social Security.
She credits work — paid or not — with helping her climb out of the worst depths of mental illness. When she was first diagnosed with a set of mental disorders in the late 1980s, she said, people living with mental illness retreated to their homes, drank coffee and watched TV.
Instead, between multiple hospitalizations and a struggle to find the right medications, she began volunteering at NAMI, which she heard about through a mental health support class.
Sherry Fischer, NAMI director of operations, has watched the ups and downs of Jones’ recovery since she started teaching with her five years ago.
She attributes Jones’ stability to these things: “Karren is the perfect example of what love, good doctors, medicine and working can do.”
Working the WARMline
On a recent Friday morning a man called the WARMline at NAMI’s Jefferson City office. He’s called every week for five years.
Unlike a traditional emergency hotline, the WARMline exists to provide more constant support to 31 Missouri counties. People who work the WARMline know what they’re talking about: All have been diagnosed with mental illness.
Jones is one of six responders for the Jefferson City office. She has worked the phone line since it opened five years ago.
On this day, the caller wanted to talk about anxiety attacks he was having at his new job. Jones asked about the recent medicine his doctors had prescribed. She also offered encouragement.
“I’m so glad you got a job,” she said. “It’s wonderful that you took that initiative.”
Her regular callers share intimate details about their lives. In return, she sometimes shares her own experiences to gain their trust. She says it’s easier to open up to someone who’s been in a similar place.
Fischer recalls a man who called the phone line and was disappointed to find her, not Jones, on the other end.
“Karren is on the other line,” Fischer remembers saying. “But you can talk to me.”
“I can talk to you,” the man politely said. “But I would really rather spend my 20 minutes talking to Karren.”
Even though the majority of Jones calls are from regulars, she says she never knows what she’s going to get when she picks up the phone.
The WARMline is not meant to handle emergencies. Phone responders direct such calls to the appropriate resources, like the state Access Crisis Intervention line that is also contracted by the Missouri Department of Mental Health.
But some of the calls are from people in crisis, often because of limited resources, such as a lack of hospital beds and affordable care.
Jones helps these callers the best she can. She took a call from a woman driving a car with a suicidal passenger who had lost control and was growing increasingly violent. Jones told the driver to go the nearest emergency room and try to attract the attention of a police officer along the way.
Jones says the callers are just as valuable to her as she is to them.
“I feel needed,” she said. “I didn’t feel needed before. I feel like I can make a difference.”
She knows from hard experience what it’s like to not have anyone to turn to.
A troubled past
It’s 1974. Jones, then 29, lives on a farm in the small rural town of Leeton, outside Kansas City. She works in a shoe factory riveting straps onto boots. She’s been married for nine years and has an infant daughter. She doesn’t love her husband — she married him to get away from her family.
She takes medication for bouts of depression, visits a counselor and has seen angels since she was 19. She has a history of severe childhood abuse but tells no one.
She doesn’t know that her attempts at a normal life are undermined by other mental disorders. She won’t know until years later that not everyone sees the angels that hover in the corners of rooms.
All she knows now is that she can’t stand her husband, the “emotional rock” who never smiles and never laughs, who’s never sad and never cries. All she knows is that she can no longer pretend to be the farmer’s wife. All she knows is the medication is no longer enough.
One day she comes home from work. She gets the mail. And suddenly she can’t take her life another minute. Another second. She loads up her car, grabs her daughter and takes all the household and prescription medicine she can find with her. Then she leaves.
She drives to a local preacher’s house. She asks him to take her daughter for a couple of days.
She swallows the pills and drives, trying to leave life behind her. Drugged and scared, she crashes into a ditch.
Police and paramedics arrive and take Jones from the itchy grass to Golden Valley Memorial Hospital in Clinton to get her stomach pumped. It is here that she is diagnosed with major depression. Later, she is evaluated but not committed at Fulton State Hospital, the oldest psychiatric hospital west of the Mississippi River.
The doctors tell her she’s had a psychotic break.
What do you need? She remembers them asking.
What will help you?
Even now, Jones remembers looking out the window on the drive to the Fulton State evaluation. The day was bright and sunny. She watched big fluffy clouds float by from the backseat of the car.
She’d been to Fulton before — on a trip for psychology class in high school. She was convinced patients went in but never came out.
“I thought that’s it, this is the end of the road,” Jones said. “I think that’s what gave me the fight to get out of there and do the right thing.”
So when the doctors asked Jones what she needed, she had an answer.
“I said, well, I need a divorce. And I need to move. And I want to become a nurse.”
Jones got her daughter back and lived briefly with her family before getting that divorce, seeking counseling and enrolling in nursing school. Her tuition was paid by the state, which had a shortage of nurses. Jones graduated in 1977 from the Missouri Board of Education School of Practical Nursing program in Kansas City.
Not long after that, she met the man who was to be the love of her life – and one of her greatest traumas. They married in 1980. He adopted her daughter. Together they moved to Hot Springs, Ark., where he got a job at a truss company and she at an intensive care unit in a hospital.
Only later would she realize that the relationship helped lay the foundation for her breakdown eight years later.
What she remembers before that: her husband’s drinking; the Labor Day weekend in 1985 when she discovered him molesting her daughter, then 13; an ensuing divorce; and two years later, a phone call when he convinced Jones that he had changed, and begged her to come back. She and her daughter moved to Jefferson City in 1988 to be with him.
Back in Missouri, Jones got a job in the intensive care unit at St. Mary’s Hospital. The three lived together for one month before she realized her ex-husband’s old drinking habits had not changed.
On their own again, the mother and daughter were homeless. They lived at the Rape and Abuse Crisis Services shelter for a couple of months until the program provided an apartment.
Jones says 1988 and the months that followed are a blur for her. Symptoms of disorders, some still undiagnosed, came to a head as she tried to deal with the emotional and physical repercussions of her daughter’s sexual abuse, the trauma of her marriages and her own childhood abuse.
She lasted one month at St. Mary’s. She was assigned to fill in at the psychiatric unit and realized she was sicker than some of the people there. She hallucinated often, lost time and was severely depressed and anxious.
“I always felt that nursing was a priority, and if you can’t do it and you can’t do it right, then you need to not be doing it,” she said.
Jones doesn’t remember who applied for Social Security disability on her behalf. She thinks it might have been an employee from Pathways, a community-based mental health center where she sought counseling and support during this period of time.
She was hospitalized five times that year for severe depression and suicide attempts. During these hospitalizations, she officially learned all of her diagnoses — major depression, post-traumatic stress disorder, schizoaffective disorder and dissociative identity disorder.
A history of abuse
As a child growing up in Lee’s Summit, Jones slept with her mother and two sisters in a potato cellar in her grandparents’ backyard. The children slept in the vegetable bins on the sides of cellar. Jones isn’t sure why they didn’t sleep in the house with her stepfather, grandparents and extended family.
What she does remember is that she was physically, emotionally and sexually abused. She says her mother beat her and then hid her when guests came to visit; her stepfather threatened violence and often acted on those threats; her stepfather and grandfather were sexually abusive.
When the abuse happened — horrible things Jones doesn’t describe — she’d find herself on a shelf near the ceiling of the trailer where the bad things happened. Looking down at what was happening, she’d feel nothing, disconnected. She’d leave her body and wouldn’t return until the horrible things were over.
When some people, especially children, experience something so horrific, so traumatic and terrifying that they do not know how to process what is happening to them, they need to find a way to handle the pain.
Today, Jones says dissociative identity disorder explains her out-of-body-experiences. Each time she left her body, the horrible things that happened to the children she watched take the brunt of her pain from the shelf near the ceiling were tucked away in a little compartment, a new personality.
“And they are all there, because they protected you from something so horrific that you couldn’t tolerate it.”
“So you didn’t have to feel it.”
In the past, if Jones became agitated or stressed enough, her mind shifted between those compartments. She’d be unaware of what was happening to her, causing her to lose time.
Jones says her traumatic childhood caused post-traumatic stress disorder and dissociative identity disorder. She thinks trauma also played roles in her depression and schizoaffective disorder, but she may be genetically prone to either of those disorders as well.
It is 2008 or 2009. Jones has a therapist in Columbia. During one session, the therapist pulls out a nail file and suddenly Jones finds herself panicking.
She shifts into one of her other personalities, one of her “compartment people.” Jones’ childhood traumas sometimes involved knives — she thinks the nail file is a knife and is going to hurt her.
She prepares to defend herself if she’s attacked. The therapist realizes what is happening.
“It’s just a nail file,” Jones remembers her saying. “See it. Touch it.”
Jones is brought back from the brink.
She visits a psychiatrist on Mondays who manages her medications and a different therapist on Thursdays who specializes in dissociative identity disorder.
During visits to her therapist, Jones sometimes goes to a place she’s created in her mind. There is a big tree and a tree house at the top of a sloping hill. The hill overlooks a crystal clear lake. There is honeysuckle. Lots of it. It’s peaceful, safe.
Her safe place helps her process the traumatic memories of her childhood that for years she would not talk about. She says she’s still working through new material and has discovered 12 separate personalities through her treatment, though there may be others.
When she began working with her therapist years ago, she couldn’t afford the sessions. But the therapist, who asked not to be identified for this story, offered to work with her for free. Jones says the therapist told her that she had one of the worst cases of abuse she had ever seen.
Therapy also helps Jones process her hallucinations, like the angels that she finds comforting.
“My doctors and therapist don’t like it,” she says, laughing. “But I enjoy them.”
Today, Jones pays her therapist when she can, giving her some money every month. She uses Medicare insurance to pay for her psychiatrist.
The right combination
In late March, Jones forgot to take her daytime medication but took her nighttime medication as usual. She had nightmares and frightening hallucinations throughout the night. She felt normal again after taking her medicine regularly for a few days.
She must be strict about taking the medication she’s been prescribed.
She’s taken various medications for her disorders since the 1970s but has endured years of different doctors and experiments with different medications.
Today, she’s on a combination that works. She takes medication daily for depression and anxiety. She takes other medication for chronic health problems, like hypothyroidism and osteoporosis.
Her medication costs more than $3,000 a month, but Medicare and Medicaid enable her to afford it. She pays a monthly “spenddown” fee, similar to an insurance premium, that makes her income low enough to qualify for Medicaid. The state pays her Medicare premiums and co-insurance because of her low income.
Jones pays for basic living expenses, such as food and rent, with her Social Security income, $906 a month.
She says it’s hard to make ends meet. Occasionally she goes to food banks. She lives in an apartment building owned by the Jefferson City Housing Authority, where her rent is prorated to her income.
The NAMI family
The Jefferson City NAMI office is made up of a tight-knit group of people touched by mental illness. These people are each other’s safety net and Jones refers to her co-workers as her “NAMI family.”
They have lent her money, fed her and reminded her that she is valuable and loved. They’ve watched Jones cycle through hospitalizations and struggle when her medications were off.
There is Fischer, whose puppy, Tallulah, often visits the office and follows Jones around wherever she goes. Fischer has fed Jones, housed her at times and taught her to keep a budget.
There is NAMI's executive director, Cindi Keele, who leaves big lipstick prints on Jones’ cheek when she kisses her at work. When Jones’ car broke down several years ago, Keele wrote a personal check to cover the damage, told her it was a gift and refused money in return.
There is Alice Kliethermes, another WARMline responder, who once discovered where Jones was hospitalized by calling every psychiatric ward and pretending to be Jones’ sister.
Other support groups have been there for Jones as well. She’s attended an Adult Children of Dysfunctional Families group for the past seven years. It’s a 12-step program, and this year she received her seven-year token.
Jones says the hardest thing is watching someone fall through the mental health safety net.
She remembers a family that needed NAMI's help to manage a suicidal son. The son eventually took his own life. She attended the funeral with other NAMI members.
“You think, if I had just done one thing different, maybe it would have made a difference,” she said.
"But you’ve got to keep on trying.”
Remission, not recovery
Jones still sees angels.
They are small, petite and pretty. Their bodies are the size of a finger. Their wings the size of a hand. They don’t speak, but they do look pleasantly at Jones and make her feel safe.
She knows they are hallucinations, part of an illness that she will likely always have.
“This is the way I look at it,” Jones says. “There’s remission. I don’t know if I believe wholeheartedly in recovery. I think you are on the road to recovery and you work toward recovery and that’s your goal.
"But very few people I know have ever reached full recovery, where they can say — no medicine, no nothing, I’ll never see a counselor or psychiatrist again. It just doesn’t happen that way.”
What she does know is that consistent care has helped her to a stable place, a place where she can safely process the trauma of her past and move beyond it, where she can play an important role in a community that helps those that need it — a place where Jones, who believes she will never live without mental illness, can laugh and say she feels incredibly lucky.