NIKKI’s AND KEVIN’s STORY

Here is another look into the frantic “sub-universe” of families whose lives have been deformed by the presence of mental illness. It is a story of what can happen to a patriotic veteran who returns home to find himself overwhelmed not only by psychotic tendencies, but also by the bumbling ineptitude and bureaucratic rigidity of hospitals–in particular, in this case, a Veterans Administration medical center in Ohio. The story is told by Kevin Landis’s devoted wife Nikki.

NIKKI’S STORY

Nikki and Kevin Landis

I’m in that terrible place where I’m watching him fall apart, completely lost and separated from reality, and nobody seems to believe me.”

This is Nikki Landis speaking. Nikki Landis is a 37-year-old wife and mother of 16-year-old twins and three younger children. In her Facebook postings and in her communications with me, she comes across as a blithe spirit: bright, vital, endearing, fond of travel and books, an embracer of life, and devoted to her family.

I’m married to the most amazing, intelligent, strong, caring man in the world,” she has told me.

And yet her marriage has pulled Nikki Landis into a grotesque and broken realm: a parallel universe that that entraps people at random and imprisons them in a morass of nightmarish cruelty and suffering, and muffles the sound of their voices when they try to call for help. It is a universe mostly invisible to the mass of “normal” people who brush against it every day, and yet one that diminishes the “normal” as well, in insidious ways they seldom notice or suspect.

It is the parallel universe of the mentally ill, and, too often, of the loving relatives who try to help them.

“Why does nobody listen?” Nikki Landis asks. “Why does everybody insist, ‘It will be OK’?”

Nikki’s husband Kevin, who’s 39, is in the grip of psychotic behavior. He has suffered psychotic episodes for the past ten years. None of the support or treatment systems designed to help people such as Kevin seem able to do anything for him. In Nikki’s view, no one cares.

“I don’t understand why it is so difficult after 10 years of this for people to understand that I’m not being dramatic or exaggerating. But these same people will question, two weeks from now, why I didn’t do more. Why I didn’t react differently. Why I didn’t say the right thing that could have stopped all of this.

“Even the doctors act oblivious. ‘Why didn’t you tell us he was doing this or that?’ they will say. And I do. I tell them, and nobody hears the words coming out of my mouth. Then somehow everyone finds a way to blame me.”

Adding to Nikki’s burdens is the fact that her twins suffer from autism.

 

Kevin was Nikki’s high-school crush in Germantown, Ohio (pop. 5547), but Kevin, two years ahead of her, didn’t notice. He joined the a police department after he graduated. Nikki went off to college. A day after the terrorist attacks on the World Trade Center in 2001, Kevin showed up at the town recruitment center to enlist in the Army. After basic training, he was deployed to Kuwait as a machine gunner in February 2003 with the elite 101st Army Airborne Division, the “Screaming Eagles.” A month later he was in Iraq.

Near the city of Al Hillah in Babylon Province, Kevin’s company was ambushed. Enemy soldiers were firing at him from 30 feet away. “He can still feel the bullets zinging past his head,” Nikki told me. “A grenade rolled right past him.”

Somehow Kevin escaped injury—combat injury Other enemies were attacking him more subtly. Iraq is a sub-tropical region, and, like many combat troops in Iraq, he was issued a weekly dose of Mefloquine, a drug in tablet form that acts to prevent malaria transmitted by mosquito bites. Mefloquine can trigger side effects in some users, such as depression, severe anxiety, and psychotic symptoms associated with schizophrenia. 

After his three-year tour was up, Kevin returned to Germantown, where he and Nikki began dating in 2006. Kevin resumed his career as a policeman in another department. The two were married a year later. They started their family. Along the way, Kevin began behaving erratically. Sometimes his words and behavior terrified the children, and his wife as well. The assumption at first was that the young veteran was suffering from post-traumatic stress disorder.

Kevin has never been violent toward Nikki or the children. But his paranoia induced him to scream terrible things at his wife. “I’m the bad guy,” Nikki told me. “He shouts at me all of the things he wanted to scream at his parents thirty years ago. He mixes me up with his mom in his mind. He has left the house to live in his car more than a hundred times in the past ten years. Right now he is living at his parents’ house because I can’t do this anymore. I can’t watch.”

And, in Nikki’s view at least, the agencies of therapy and restoration have refused—or have been ill-equipped—to help Kevin, or her.

 

In April 2016, after years of resisting treatment, Kevin agreed to be examined at the Lindner Center of Hope, a leading private treatment center in Ohio. There, he was diagnosed with bipolar disorder—one of the “family” of brain diseases that include schizophrenia and schizoaffective disorder.

The doctors prescribed Depakote, a sodium-based medication used to treat seizures and bipolarity, and the couple returned home. The Depakote worked well for a while, then began losing its efficacy. By October, Nikki said, her husband was out of control. He had been ramping up to a big dysphoric mania, and the second week of October he blew. He raged like I’d never seen. He was sweating so badly that he looked like he had just stepped out of the shower fully dressed. He was raging and panting and very scary. I knew he was suicidal.”

 

By now, Kevin was off the police department and out of work. The Landises, fearful that their medical plan would not cover inpatient stays (they later learned that it would) turned to the federal agency created precisely to protect and restore combat veterans such as Kevin Landis: young patriots who would not hesitate to risk their lives when their country was under attack. This was the Veterans Administration—specifically its medical center in Dayton, Ohio.

 

The couple had avoided the VA because they had heard the horror stories that reached scandal proportions just a few years ago: waiting periods so lengthy that some patients died before they could receive treatment (the average backlog at one point reached 115 days); falsified documents; negligent care. But now they felt they had no choice. At least Nikki did. She called upon a desperate tactic to persuade her husband. “I told him if he didn’t go to the hospital, I would have to divorce him. I’d said this before, but this time it worked.”

It turned out that the stories they’d heard about the VA were a little on the rosy side.

 

“The Veterans Administration has been nothing short of evil in helping him,” Nikki says. “worse than I can describe. I have a hard time talking about it still.”

Kevin Landis entered the VA hospital on a Friday night in late October and remained there for eighteen days. During that time, Nikki said, psychiatric doctors refused to allow Kevin to discuss his combat experiences in Iraq. Given that most combat veterans have to be coaxed and cajoled to break their silence about what happened to them—a necessary “first step” on the road to recovery—this doctor-enforced gag imposed on Kevin seems to defy reason.

As for his diagnosis of bipolar disorder from the private hospital, it cut no ice with the VA, Nikki told me. “The VA has a policy that they don’t accept outside diagnosis.”

(My online check of Nikki’s assertion led me to an NBC News story filed on May 22, 2012. It detailed the frustrations of a veteran of the Afghanistan war named Daniel Hibbard, and contained this passage: “Hibbard, who lives in Louisville, Ky., has been twice diagnosed at Veterans Affairs facilities with post-traumatic stress disorder since 2010. But something unexpected happened last month: Hibbard received a letter reversing his PTSD diagnosis. His new diagnosis, which was assigned without an in-person examination or assessment, is personality disorder.”)

(“‘It makes me feel like I’m being called a fraud, a fake,’ Hibbard said of the diagnosis. ‘You might as well go ahead and burn my record and say I was never in the military.’”)

On the following Tuesday morning, Nikki received shocking news. “The doctor met with him for about ten minutes. He was in a paranoid state and told her that I had been researching bipolarity for years, and had a shelf full of bipolar books so that I could convince doctors he was bipolar and drug him up to control him and ruin his career.”

Kevin swore to his wife that he didn’t say this. “But to be honest, he very well may have.” Whatever the case, “she ‘undiagnosed’ him. She then spent days defending her actions, refusing to look at his chart from his outpatient doctor, and accusing me of terrible things.”

Nikki sensed that something was not right. “A nurse told me that this doctor went out of her way to make sure patients were labeled ‘malingerers’ so that they couldn’t get VA benefits. This doctor started saying he didn’t have PTSD or bipolar; he had a ‘personality disorder.’ On his chart she wrote that she believed both of his parents had personality disorders (she never met either one), and that I had a personality disorder as well.

“I googled ‘VA’ and ‘personality disorder’ and learned that there had been several VA scandals in which doctors were told to diagnose mentally ill veterans with personality disorders. If the VA says you have a personality disorder, it disqualifies you from VA benefits for mental health. When I brought this up to her, she accused me of being paranoid. And she wrote in his chart that he was doing all of this for money, and that his police pension would be big. In fact, Kevin just got approved for his police pension on Wednesday and it puts us below the poverty line.”

“In the end,” said Nikki of the doctor, “she sent him home on Effexor, which is one of the worst possible drugs for bipolar. It took four months and two more hospitalizations to detox him from the Effexor.

“It’s so hard for me to think about that time, how he was treated, the phone calls I got when he was crying, him not even knowing where he was or how long he’d been there. And the doctor treating both of us the way she did. It was exhausting and emotional, and just devastating. My kids saw me crying, my kids missed their dad, and my 8-year-old son said, “Mom, I’ll never be in the Army because they make the men fight and then don’t take care of them.”

 

Nikki Landis’s love and support for her troubled husband has never wavered. She does not deviate from her insistence that she is married to the most amazing, intelligent, strong, caring man in the world.

“But sometimes that man goes away. His body is there, but his ability to laugh, to be kind, to care—it’s gone. His ability to know who I am—it’s gone.

“His own kids don’t recognize him, and say things like, ‘Why is dad laughing so much when nothing is funny?’ Or, ‘Why does Dad think bad things about you?’ Or, ‘Dad doesn’t look like my dad.’ It’s heartbreaking. Literally, you feel the pain physically inside and it doesn’t go away.

“He hates me right now. It’s not the first time, but it never gets easier. And sometimes I hate him too. I hate the sick him, the illness that convinces him that I am hurting him or out to get him. I hate the part of him that can’t fight back.

“I’m pretty sure we are headed for another hospitalization but our insurance runs out in 20 days. I don’t know what I will do then. I’ve applied for Medicaid and we haven’t heard a word.

“It’s very lonely. I’m only 37. I loved to travel and explore and LIVE! I’m a fly-by-night, wild child, creative type, earthy sort of person. Kevin was the down to earth responsible one. I’m not cut out for this, but I’m doing the best I can. Most of all I miss my husband. My kids miss their dad.”

 

In January of this year, thanks to a generous extension of Kevin’s insurance coverage by a former police chief, the couple was able to return to the private hospital for a new diagnosis.

 

The psychiatric doctors found that Kevin was now suffering from schizoaffective disorder—the worst known variant of schizophrenia, combining this disease’s symptoms with the added ingredient of paranoia.

 

At this writing, the Landises are awaiting a hearing with the state agency that handles his disability pension. It has been postponed a time or two. Meanwhile, Kevin is on meds. Some sorts of meds.

 

On April 23, Nikki emailed me:

 

“He woke up today just fine. Completely the old Kevin. I won’t hold my breath, but I pray it lasts a few days. I cling to these brief respites.”

 

“This is torture.”

 

 

 

 

 

SPEAK OUT!

Scott Walker By Michael Vadon (Own work) [CC BY-SA 4.0 (http://creativecommons.org/licenses/by-sa/4.0)], via Wikimedia Commons
Scott Walker By Michael Vadon (Own work) [CC BY-SA 4.0 (http://creativecommons.org/licenses/by-sa/4.0)], via Wikimedia Commons
My upcoming book’s title, NO ONE CARES ABOUT CRAZY PEOPLE, is intended as ironic: it is taken from a notorious, subpoenaed email written in 2010 by an administrative aide to Scott Walker. The aide was trying to shield the then-Milwaukee County Executive from accountability for a mental-hospital scandal that was unfolding at the time.

In the few weeks that I have been publishing this blog, I’ve found myself thinking about an alternative title, one that lacks irony and only somewhat overstates the truth.

the screamThat title would be: NO ONE KNOWS ABOUT CRAZY PEOPLE.

For centuries, society has hired, or elected, custodians to see to it that the mentally tormented are kept out of sight and out of—well, out of mind. Those who take for granted their place in the “normal” world prefer to sidestep the colossal moral challenge—the primal fear—triggered by walking, talking evidence that people very much like them can go insane. (“There, but for the grace of jails. . .”) Thus, the mentally ill continue to struggle for their humanity under a cloak of social invisibility, and silence.

None of this is to suggest that people in the throes of psychosis should be left to roam the streets. Hospital treatment and supervision are imperative during such episodes. The problem is this: despite the growing consensus among research psychiatrists that a patient’s integration into a sympathetic community can dramatically reduce the symptoms of brain disorder, progress toward this goal remains slow: impeded by the cloak of invisibility and silence.

Dorothea Dix
Dorothea Dix

Few people have better understood the human spoilage guaranteed by this cloaking than the great pioneering reformer Dorothea Dix, whom I quote in the epigraph to NO ONE CARES ABOUT CRAZY PEOPLE. In remarks to the Massachusetts legislature prepared in December 1842, following her tour of mental asylums in the state, the small and sickly crusader declared:

“I have come to present to you the strong claims of suffering humanity. I come as the advocate of the helpless, forgotten, insane men and women held in cages, closets, cellars, stalls, pens; chained, naked, beaten with rods, and lashed into obedience. . .”

Time has brought improvement to the plight of insanity victims caught in psychosis—the untreated, the undiagnosed, the wrongfully incarcerated, those who refuse to confront their illness and aggressively repel efforts at help.

Time has not brought enough improvement. Not early enough improvement.

The cloaked suffering of the mad thrives, and it thrives. NO ONE CARES is laced with accounts of insane jail and prison inmates, many of them unindicted, who took their lives in their cells or in solitary confinement (I hope against hope that you might read this, Governor Chris Christie of New Jersey, and reverse your support for this gruesome form of soul-murder), and who thus died beyond the range of public attention, save for a few readers of transient news accounts.

Thus, “No One Cares” is fed by “No One Knows.” The two collide, and collude.

Thus far in this essay I have focused on the “invisibility” aspect of “No One Knows.” Of equal destructive importance, I believe, is the silence. The self-imposed silence that mutes the voices of those most entitled—and, I think, obliged—to break the silence.

I speak of the close friends and relatives, parents especially, of the afflicted. These people are qualified not by professional training or certification, but by a precarious vantage-point that no one else can share who are uniquely qualified by direct observation with psychosis.

And yet here is one of the most desolate truths about “No One Knows”: it is far too often a by-product of silence. Self-imposed silence. Silence maintained by those closest to the victims of mental illness who are in active psychotic states. This usually means their relatives. Typically, “relatives” means parents. And “parents” often includes the sub-category of single mothers, women who for one reason or another have been left to care for their volatile children—often male children, as a statistical fact. (Men typically develop schizophrenia between ages 15 and 24; women, between 25 and 34.)

Left to care, and left to scream in silence as police and community social-service agencies designed to help them often fail during episodes of crisis—or in pre-crisis. Police remain under-trained in this area, or not trained at all. In too many cases, the desk-man either shrugs off the frantic phone call or the squad arrives only to make matters worse. Paramedics and social workers feel hamstrung by coils of legal restrictions created to protect the civil rights of people in psychosis who “reason” that they don’t need help. (People in psychosis are, by definition, people deprived of reason.)

And so the family caretakers scream in silence—while their deracinated children scream aloud their suicide threats or violent threats against others, often including the caretakers, as the untreated psychosis deepens. and the cop on the phone explains (in essence) that the screamer cannot be detained unless he or she “constitutes a threat to others,” and that the uttered threat is not enough; the psychotic victim must actually carry out the threat, which, of course, in theory, law enforcement exists to prevent.

The caretakers scream in silence. And their urgent silent screams go unheard by the world around them. And the cloak remains in its suffocating place.

The reasons for self-imposed silence aren’t hard to track down. They’re rooted in human nature. The fear of embarrassment—stigma—is a fundamental one. To appeal publicly for help for a struggling insane relative is to acknowledge that one has an insane relative. Most people live their lives outside the community’s spotlight. To step into its glow for any reason can be terrifying. The imagined shame and ostracism such an admission might bring on is a powerfully, and sometimes fatally inhibiting burden.

Anxiety over the future of the victim is another. What if everybody knows she is schizophrenic? She will never get a job! She will never have friends! She will never marry!

And then there is the soul-crushing factor of futility. America, especially rural and suburban America, remains dotted—clotted—with service agencies, police departments, and courts that remain either stubbornly self-anesthetized to the gothic realities of psychosis, or else are paralyzed by the fear that any action they take might violate some law or statute or other restriction, real or imagined, that would make them civilly liable or criminally accountable for carrying out a good-faith intervention. Thus, far too many desperate mothers and fathers have called police, hospitals, lawyers—anybody—for help, against a background of menacing threats and the pounding upon a locked door, only to be told: “There is nothing we can do.”

This is surreal. This is grotesque. This is beyond the imagination of anyone in the “normal” world; only those who have endured it can appreciate the resulting dread that soaks the heart and blots out hope.

Schizophrenia has struck at both my children; once, fatally. I understand the heartbreak, the dread, the galactic frustration of my fellow survivors and sufferers who must watch their loved ones slip into a state that the world would prefer not to hear about, nor try to heal. I understand the powerful protective wish to remain silent.

And yet, in my core, I cannot accept the silence. I cannot accept it because silence is the lifeblood of “no one knows,” which in turn is the lifeblood of “no one cares.”

In my core, I want to confront all the silent sufferers—“confront” is the only word—and shout at them to shout their stories from the rooftops: to badger the newspapers and radio and television stations in their communities to pay attention to their stories, and amplify them, urgently and accurately, and damn the risks of stigma and anxiety and imagined futility. I want my fellow sufferers to raise a collective voice all across the nationwide archipelago of the mentally ill. I want an impassioned, fearless grass-roots movement to rise up and intersect with the hopeful, but top-down breakthrough of the recently enacted 21st Century Cures Act.

I want the “invisible” mothers and fathers and caretakers of our most helpless citizens to take up the banner of Dorthea Dix, and affront the conscience of emergency responders, police, doctors, judges, and the largely oblivious and benumbed legislators across the country. I want to see a great and vital conversation burst into public awareness: a conversation that until now has been conducted under the cloak: in furtive telephone calls, emails, hushed conversations, and within the several “confidential” websites where members may speak candidly under strict rules of confidentiality.

All these conversation forms are cathartic. None is enough.

I grant that my career choices have annealed me to public exposure and its consequences. My training and experience, now spanning five decades, has been in journalism, which has in turn led me to nonfiction narratives. Over this time I have learned gradually to overcome my own severe native reticence, and to place truth-telling (as I understand it) above all other considerations. I have grown comfortable with violating my own privacy. NO ONE CARES ABOUT CRAZY PEOPLE, if it is nothing else, is a testament to this.

I respect—I ache for—my good, grieving, terrified sisters and brothers who cannot yet imagine shouting their stories from the rooftops, seizing the world by its lapels and screaming, “YOU’VE GOT TO PAY ATTENTION!” I wish I could deliver them from their agony. I cannot. The hard truth (as I understand it) is that they must do it themselves, until their individual voices meld into one continuing thunderous voice. We must throw off the cloak. No one will do it for us.

More on this subject later in the week.