My daughter sleeps in jail tonight, not because she is a criminal, but because the voices told her to do something that was. Instinctively, I stop at her bedroom door and look in at the stuffed animals left untouched on her pillowed bedspread, and I try to accept the fact that tonight, my precious baby girl will rest her head on a cold and dirty mattress in a jail.
You see, the world sounds much different to Trina than it does to you and me. When she hears a person's voice, she can't always tell if the person is really there or not. If you ask her, Trina will tell you she's not sick and doesn't need psych meds. God has chosen her to hear voices no one else can hear (often calling it "telepathy"), and if you had any faith, you'd see it that way, too.
Today it was God himself speaking, telling Trina it would be okay to pick up the salesman's keys and drive off the Toyota lot in a new Camry. So drive away she did, and that's why my daughter sleeps in jail tonight.
I wrote those words almost three years ago, and still they bring tears to my eyes. Even today I shudder at the terrible shock Trina must have felt when the handcuffs clicked behind her back, believing--no,
knowing--that she had done nothing wrong and that her God had surely abandoned her.
Trina is now 23, and in the coming weeks we'll go to court to ask a judge to take away her right to make her own decisions. Why it has taken three years is one of the many great tragedies of how we treat the sick youth of America.
If you choose to read past the break, I'll tell you a father's story of a child trapped in a crisis she did not choose. Part I tells of of the early days through her inevitable incarceration; it runs from California to the White House and back again, with cameos by Pawn Stars and the Secret Service. Part II will tell of Trina's experience with the criminal courts, and a competency hearing process and involuntary commitment to a California Psychiatric Hospital. Part III will describe a go at probation that was doomed from the start and our decision to take away her rights and get a conservatorship in California. It will offer some final thoughts on policy change from the point of view of parents--one a criminal defense lawyer, the other a public health nurse--who despite their respective professional expertise could not manage to get their own daughter treated for an imminently treatable condition.
Of course, this is really Trina's story, but it is also an everygirl story: of mental illness in a sick world; of scarce resources in a land of plenty; of ignorance, apathy and an incomprehensibly uncoordinated system of mental health services; and finally, of a legal system that turns out to be wholly inadequate to protect our beautiful sons and daughters.
MENTAL ILLNESS: SCOPE AND STIGMA
The Centers for Disease Control and Prevention estimate that 13-20 percent of boys and girls aged 3 to 17 in America experience a mental disorder in a given year. Trina's condition, known as schizophrenia, affects 2.6 million people and usually begins in the late teens or early twenties. As common as mental illness is, though, we really don't want to talk about it. There continues to be a stigma associated with mental illness some 40 years after Rosalyn Carter very publicly talked about it, and we'd all really rather pretend it just doesn't exist.
State Senator Creigh Deeds on 60 Minutes
While there are signs the
stigma may be lessening, adolescent mental health rarely makes news in the absence of a tragedy such as the
stabbing of Virginia State Senator
Creigh Deeds by his son Gus last November.
Like Gus Deeds, Trina was an honor student; she spent summer camps at Stanford and Georgetown instead of surfing or mall-hopping with her friends in Southern California. And also like Gus, Trina had the advantage of two loving and educated parents trying to get her help. The voices promised each of them a heavenly reward if they would kill themselves, and each of them would try. Sadly, Gus would succeed.
Trina's first medical problem was with pain, not psychosis. When she was about twelve, she began to suffer debilitating migraine headaches, and by high school had to take classes by independent study because she would miss days of school at a time. We now know that chronic pain is often a precursor to mental illness, but we did not know that back then. A study just published by the Norwegian University of Science and Technology found that seven out of ten adolescents with mental health problems also suffer from chronic physical pain. Said Professor Marit Indredavik, who conducted the study,
These numbers are so high that the entire support system for children and adolescents needs to be made more aware of the link between physical pain and psychiatric disorders.
Trina's first signs of psychosis were not the voices, but
tactile hallucinations, which started months earlier. Trina would be doing her homework, and suddenly she felt as though she were being violated. We took her to the emergency room several times, but because the hallucinations were not threatening her with danger, there was
no place the doctors could place her to supervise the anti-psychotic medication regimen they prescribed.
From the earliest days, Trina was resistant to taking psychiatric medication. Dr. Xavier Amador calls this neurological condition anosognosia. He argues
that it is not stubbornness or denial in the more common sense that keeps these patients from taking medication. In their heart of hearts, they believe that they are not ill. Rejection of illness is essentially a symptom of their illness.
Would you take drugs for a condition you
knew you didn't have? What if that condition bore a social stigma? It was only later that Trina would admit the embarrassment she felt to be told she had a mental illness she did not believe she had.
The takeaways for other parents is that chronic pain is a warning sign for mental illness. The takeway for all of us is to start talking about mental illness the same way we talk about any other medical condition so that no patient ever again feel a stigma about being sick.
FINDING A PLACE FOR FIRST TREATMENT
I have to admit looking back that Trina's mother and I did not recognize the vital importance of that first prescription or how unlikely Trina would be to finish it on her own. The early signs of mental illness often are not full-blown, and I suppose as parents we naively hoped they weren't what we feared. We now know that compliance with treatment from the outset--from the very first prescription--provides the best chance of long term adherence.
Adequate mental health treatment can take months or years, and insurance companies do not want to pay for extended hospitalizations. There really aren't enough facilities to take care of all the patients anyway. As Scott Pelley noted in his introduction to the 60 Minutes segment Nowhere to Go: Mentally ill youth in crisis (the one featuring Senator Deeds),
in the decades after the 1960s most large mental institutions were closed. It was thought that patients would get better treatment back in their communities. But adequate local facilities were never built. The number of beds available to psychiatric patients in America dropped from more than half a million to fewer than 100,000. That leaves many kids in crisis today with one option: the emergency room.
Mr. Pelley did not mention the other "option," the county jail, which is where many of our sick kids eventually end up (let's face it, they're not going to
just get better).
What kind of civilized nation uses emergency rooms and jails as the primary instruments of care for kids in crisis?
Tragically, Creigh Deeds took his son Gus to an emergency room
just hours before the stabbing. Under Virginia law, though, the emergency room had to release him if they could not find a psychiatric bed for him after six hours. Senator Deeds is convinced the tragedy could have been avoided if only there had been psych beds available when they were in the emergency room that fateful night. This is where the
legal system compounds the problem of insufficient housing, by forcing the premature release of patients who are in no way able to take care of themselves. But more on the legal issue later; the
takeaway here is that as a civilized society we must find a way to
provide a place for treatment of mentally ill patients
before they become dangerous.
FOUR PHONE CALLS AND JAIL
Given our current state of care, I would posit that anyone who resists mental health treatment will end up incarcerated if she survives long enough. Against the backdrop of such tragedy, though, any parent of a child with mental illness will tell you there are funny moments along the way. Perhaps we use humor as a way to cope; maybe we are so emotionally exhausted that we can no longer suppress the laughter. If you find humor in any of these vignettes, don't feel guilty.
"This is the Air Force Calling, Sir"
Southern California is home to
Vandenberg Air Force Base, where many top secret and not-so-secret rocket missions are launched.
One day soon after the 2008
Presidential Election, I got a call from someone in the Base Commander's Office. "This is the Air Force calling, sir. Your daughter is here and is causing quite a commotion."
Like many of the conservatives we read about, Trina was convinced that Barack Obama was not the lawful president. Unlike most of them, however, Trina was convinced that she was. Equally sure that Air Force One was at Vandenberg that day, Trina demanded that the guards at the gate admit their rightful commander-in-chief so that she could board her plane.
The base staff handled the situation beautifully, transporting Trina to a safe location off base where her mother could pick her up. But when Trina returned the next day, they had no choice but to call the police, and my daughter was arrested for the first time.
"This is the Secret Service Calling, Sir"
Things got progressively worse for Trina. By the time she had turned 18, she moved out of the house and into her car, finding the rules at home too binding for her. Of
course we knew this was a recipe for disaster, but she was 18 and could do as she pleased. She never lacked for money, thanks to a personal injury settlement from her childhood. One day she decided she would drive her car back to Georgetown and visit friends.
I got the call over my lunch hour. I thought the staff was playing a joke when they told me the Secret Service was on the phone. "This is Agent Tapper of the Secret Service, sir. Your daughter is at the White House demanding to see the President."
I was horror-struck, sure that she was demanding President Obama's resignation, armed with all the birther nonsense she had read on the internet and all the Article II knowledge she had accumulated while at Georgetown. But apparently our little honor student had a kinder, gentler goal. "He'll see me," she had insisted at the gate, "because I know how to help him quit smoking."
"This is Pawn Stars Calling, Sir"
On her way back from D.C., Trina stopped in the midwest to visit her extended family. That was the last we had heard from her in several days, when the phone rang again. "This is
Rick Harrison calling from Las Vegas, sir. Your daughter was just arrested at our pawn shop."
Trina had stopped in Las Vegas on her return from the midwest and stopped at the pawn shop featured on the reality TV show. She was convinced that they held some property of hers and refused to leave until they returned it.
She was so insistent that Harrison had no choice but to call the Las Vegas PD. The responding officers took her to an emergency room for a psych evaluation (is this sounding familiar?), after which she was admitted on her first involuntary psychiatric hold at
Rawson-Neal Psychiatric Hospital in Las Vegas.
The doctors and nurses at Rawson-Neal were great, and extended her involuntary hold for two weeks to get Trina established on a treatment regimen before releasing her to us to continue it at home. And Trina even promised (sincerely, I believe) to continue taking the meds once she got home. We were hopeful that we had a permanent solution at last.
It would prove to be overly optimistic. Addendum: Harrison called back a week or so later just to find out how Trina was doing. We will never forget that small act of kindness.
"This is Toyota Calling, Sir"
Trina stayed on her meds about a week after returning home. Her condition worsened, and she became increasingly nasty toward us anytime she did not get her way. I had taken her car away from her in Las Vegas, so she was no longer mobile, but she did have some money remaining from the settlement. Apparently she decided to go shopping for a new car.
While she was in the sales office, God spoke to Trina, telling her she had done mighty works for the employees of Toyota. As a reward, He would give her the car she had test driven; she would not have to pay for it. I got the phone call in the late afternoon.
"This is the Toyota dealership calling, sir. Your daughter just stole a car from our lot." The police called a few minutes later. Sure that Trina would stop at home to pick up some clothes before leaving town, I gave the officer our address and waited for the news that my little girl had been arrested for grand theft auto.
And that brings the story back to me, standing at her bedroom doorway staring at stuffed animals on the first of many nights my daughter would sleep in jail.
Look for Part II on March 9 in KosAbility and Part III to follow.