Story by Cathy McKitrick • Photos and video by Sarah Welliver • Standard-Examiner staff
OGDEN — When a radio personality recently joked about Utah’s up-and-down weather being schizophrenic, Paula Halley and Leslie Richards said they cringed.
Richards is a mentor with Utah’s chapter of the National Alliance of Mental Illness or NAMI Utah, and Halley chairs NAMI’s Weber County affiliate. Their lives revolve around working with people affected by mental illness.
“I think we generally misunderstand that it is definitely a disease,” Richards said from her office inside Weber Human Services in downtown Ogden. “I think a lot of people feel it’s a lack of character, a lack of ability to just pull yourself up. But we would never say to someone who is diabetic to just get their pancreas to make more insulin.”
Mental illness is incredibly varied and complex, and Schizophrenia can be as many as 10 different diseases, Halley said. Richards offered a standard definition: “a chronic, severe and disabling brain disorder where the individual may hear voices others don’t hear or may believe others are reading their minds, controlling their thoughts or plotting to harm them.”
According to data compiled by the Substance Abuse and Mental Health Services Administration (SAMHSA) almost one in five U.S. adults age 18 and up (43.4 million or 17.9 percent) wrestled with a mental disorder or illness in 2014. And nationwide, 4.2 percent dealt with a serious mental illness (SMI). In Utah that SMI percentage rose to 4.8 percent or about 97,000 adults age 18 and older.
“I think a lot of people feel it’s a lack of character, a lack of ability to just pull yourself up. But we would never say to someone who is diabetic to just get their pancreas to make more insulin.”
SAMHSA lumps a litany of disorders under the SMI umbrella: affective or mood disorders; bipolar disorder; major depression; anxiety disorders that include obsessive compulsive, panic and post traumatic stress disorder; disruptive behavior disorders that include conduct disorder, oppositional defiant disorder and attention deficit hyperactivity disorder; eating disorders such as bulimia nervosa and anorexia nervosa; and psychotic disorders including schizophrenia, delusional disorder, schizoaffective disorder, bipolar disorder with psychotic symptoms and depression with psychotic features.
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But diagnosing a disease of the mind can be difficult, and Richards noted those determinations tend to come toward the end of puberty or as teens age into their early 20s.
“By then the brain is developed enough that you can weed out the mental illness. About that time people get their first accurate diagnosis,” Richards said.
Once diagnosed, individuals then need to learn how to manage their illness — and flummoxed relatives must grow in their understanding of the disease and how to best support their loved one.
That’s where NAMI-sponsored classes can prove invaluable. These are held at Weber Human Services, 237 26th St. in Ogden:
- Peer to Peer — a free 10-session course “for adults with mental illness who are looking to better understand their condition and journey toward recovery.” Upcoming Peer to Peer classes are scheduled from 6:30 to 8:30 p.m. each Thursday beginning June 1 to Aug. 3, or from Sept. 7 to Sept. 9.
- Family to Family — a free 12-week course that meets 11:30 a.m. to 2 p.m. Thursdays, June 1 to Aug. 17. This class is designed to teach family members of an adult with a mental illness how to best care for and support both their loved ones and themselves.
Participants must register in advance by calling Leslie Richards at 801-625-3714.
The Weber affiliate of NAMI Utah also offers support groups each Monday from 6:30 to 8 p.m. in room E102 of Weber Human Services.
Life in the trenches
“Whatever it is I have — schizoaffective disorder — I’ve had for my whole life,” said John Boydstun of Morgan. “I’ve just learned to cope with it really well. That doesn’t mean I don’t have times where it incapacitates me.”
Now divorced and in his early 50s, Boydstun said he was first diagnosed in 1985 and has since learned the value of a support system where people understand each other.
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“We have to talk each other out of trees, off ledges, and all kinds of stuff. It’s kind of a game of survival, that’s what it is,” Boydstun said of his peers who make up that human safety net.
Boydstun, who writes poetry to express some of what he feels, connected with this group about five years ago through Layton resident Bob Hall, a volunteer with the Depression and Bipolar Support Alliance (DBSA).
DBSA is a peer-directed national organization that focuses on depression and bipolar disorder. According to DBSA, those two diseases “affect more than 21 million Americans, account for 90 percent of the nation’s suicides every year, and cost $23 billion in lost workdays and other workplace losses.”
Joe Call of Roy credited Hall as being the only “normal person” in the group — Hall does not have the illness himself but became well acquainted with its symptoms as he watched loved ones wrestle with it for years.
Call, who was diagnosed as bipolar about 10 years ago, found Hall and DBSA through his boss around the same time as Boydstun.
In the comfortable confines of Boydstun’s living room, Call described the heights and depths of the disease: “I was going to the gym, I was doing things and my life was going good, then I had a crash. I couldn’t even tell what the crash was about. But it was like falling out of a two-story window. It hurts like hell but you don’t die.”
That surprise attack from within one’s own mind makes the disease particularly perplexing.
“It’s nothing that people who have the illness do — there’s a physiological & genetic core to the illness,” Boydstun said.
Boydstun acknowledged hearing voices at times, telling him things that stuck in his head for decades.
“I remember being at my parents’ house when I had my first serious, nervous breakdown and they had to hospitalize me. And I heard a voice say ‘you are the Antichrist spoken of in 2nd Thessalonians,” Boydstun said. “And I said ‘Really? Really?!’ I had to fight it for 30 years after that … I still get it in my head where I think ‘you’re going down the tubes, you’re going to spend the duration of eternity out on the perimeter, staring back at the stars where everyone else lives.’”
Patricia Robertson — a transplant from Washington state now living in Ogden — also shared her thoughts about being bipolar as she sat in Boydstun’s living room with her 14-year-old Yorkie.
Divorced three times, Robertson said she’d been dealing with the disease since she was 12 “but didn’t know it until four or five years ago when I was properly diagnosed. So now that I’m on the appropriate medications, things are easier for me.”
Hall used to think that life triggered the condition. But after years of observation, he feels differently.
“What I’ve come to understand is that although triggers are certainly part of accelerating, changing and impacting a person with bipolar disorder, the illness itself has its own cycle,” which changes the individual’s emotional and mental energy, and even their perspective on life, Hall said. “It has a course of its own that is remarkably powerful. The alteration that occurs in both thought and emotion is unbelievable in its impact.”
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Their bipolar cycles differ significantly in duration. Hall described Call’s cycles “over weeks or months,” Robertson’s “over weeks,” and for Boydstun it’s a matter of “hours or days.” But all three agreed on the agonizing depths of despair and self-loathing they face in their depressive states.
For Robertson, it’s the overwhelming feeling that “everyone would be better off without me.” And for Call, there’s a sense of guilt over basic consumption.
“In the hospital once, I refused to eat for awhile because I believed even the air I was breathing was a waste, that these resources should be going to somebody who counts, somebody who can do something — not to me,” Call said.
Boystun said that he tries not to think of himself as a bad person and to “sustain my own self worth.” But that task is hard “because you feel so guilty about little things that don’t make any sense — unless you have viewed it through the lens of bipolar.”
Busting the place up
For Josh Drzinski of North Ogden, his mental illness takes a somewhat different form. Diagnosed with major depression, high anxiety and non-combat related Post Traumatic Stress Disorder, the 31-year-old U.S. Army Veteran has been hospitalized after episodes related to depression and rage.
“I always broke expensive stuff — laptops, a dryer, phones,” Drzinski said. “I was in Afghanistan for a year and was fine when I got out. I loved being at home with my kids. But about five months in, I just lost my mind … I’d walk around the house and break everything.”
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Drzinski detailed how it felt: “You know that really irritating feeling when it’s really hot and sweat drips down your back? It’s that same feeling but going up, and it gets into the back of the neck and it pops and I just lose it — I black out.”
Now separated from his wife, Drzinski takes medications, has learned coping skills and acquired a support network through NAMI. He’s taken up disc golfing with his younger brother, and also launched a mobile auto detailing business.
“I’ve been working since I was 18 and have had more jobs than I can even count because of layoffs,” Drzinski said. “I just got tired of working for someone … tired of playing the game.”
Drzinski said his biggest hope now is that mental illness becomes a fad — “What I mean by that is that one day people will focus on mental illness, and let it be known.”
His advice to others battling diseases of the mind is simple: “Don’t be afraid.”
“There are more people that have these problems than you realize. And who’s to say that your whole family is not that same way,” Drzinski said. “So you start seeking treatment and joining these organizations and learning about this stuff, and it might fall into them wanting to join up and then they start learning — and that’s just how it spreads.”
Mentally ill behind bars
The Utah State Prison population frequently fluctuates, but a snapshot last week indicated that 41 percent of its 6,219 inmates had some form of mental illness: 264 were categorized as having a serious and persistent mental illness while 2,566 had mental illnesses that did not rise to that level.
The Utah Department of Corrections’ Clinical Services Bureau now ranks mental health treatment for inmates on a scale from A to E, with A denoting severe impairment — 55 inmates currently fall in that category; B is moderate impairment, consisting of 366 inmates; C is mild to moderate impairment, consisting of 1,401 inmates; D is minimal impairment, consisting of 1,170 inmates; and E refers to the 3,220 who require no mental health services.
Blitch Shuman, deputy director of Clinical Services, described the state prison’s mental health program as very robust. But he acknowledged that has not always been the case.
“Around 2000, we were flooded with mental health patients coming in (to the prison) and we were the de facto for what was going on on the outside or what didn’t go well at the state hospital,” Shuman said. “But since then the program has really measured up.”
That meant beefing up professional staff with therapists, interns, psychologists and psychiatrists who could effectively handle the workload.
According to Clinical Services Bureau Director Tony Washington, the bulk of the prison’s mental health services are provided on an outpatient basis.
“We have an inpatient population that is relatively small,” Washington said, “and those are the folks that have to have 24-hour nursing and more advanced care.”
Some of the state prison’s inmate population gets housed in county jails, but only if they’re physically and mentally healthy, Shuman said.
“The acute population is kept here at the Draper site because it has better access to outside services such as hospitals and is kind of the heart of our medical and mental health programs,” Shuman said.
When asked how the facility handles costly medications, Washington said “We pay.”
“It’s one of our ongoing challenges,” Washington said. “With rising costs of healthcare and medications in general, we have to try to manage budget-wise.”
Sometimes that means using comparable medications that cost less but still treat the condition.
“We use a formulary and review it constantly. If exceptions are needed, we make those through a review committee and the clinical director,” Shuman said.
In addition to medications, inmates meet regularly for group therapy sessions and also receive individual therapy counseling, Washington said.
Having a captive audience has actually worked in their favor.
“Our population is fairly stable — a patient comes in and they’re here for 10 to 20 years, so we know these folks and we get pretty good at drilling down to the real issues of treatment,” Shuman said.
Both Washington and Shuman have participated in design sessions for the new state prison, and believe that future facility could make a big difference in inmate outcomes.
“It’s part of a changing philosophy nationwide. In the past prison was considered just a punishment, so it didn’t matter if it were dark, miserable and whatever,” Washington said. “But there’s a change and focus more toward rehabilitation so the new prison is being built with that in mind.”
Shuman acknowledged a connection between the prison’s mentally ill population and their ability to access treatment on the outside.
“Our mental health population fluctuates up or down depending on community funding,” Shuman said. “So if the funding is taken away, they commit crimes and end up here if they’re not treated.”