THANKS FOR ALL YOUR SUPPORT!

Announcement

With this message, I will be ceasing new entries on this blog related to my book, NO ONE CARES ABOUT CRAZY PEOPLE. I will leave the blog online for an indefinite period so that I might be of help for those of you looking for connections with others in the sub-universe of mental illness.

I thank the many people who have viewed and responded to my entries over these months. You have been thoughtful, brave, and generous with your responses and ideas regarding mental illness–your own, and those of people whom you love. And your kindhearted reactions to the music, photographs, and stories of and about my sons Dean and Kevin have warmed Honoree and me immeasurably. I hope that my essays and reportage about the scourge of mental illness has brought solace and encouragement.

I suggest that those of you seeking support and a safe place to share your stories will consider the private Facebook site Circle of Comfort and Assistance. Membership requires a sponsor, but I will be happy to consider sponsoring any of you who write to request it. I would like to thank my team of editors and publicists at Hachette, the publisher of NO ONE CARES ABOUT CRAZY PEOPLE, for believing in my book and committing themselves full-out to its success.

Speaking of books, I highly recommend that you seek out and purchase Dj Jaffe’s powerful, informative new work, INSANE CONSEQUENCES: HOW THE MENTAL HEALTH INDUSTRY FAILS THE MENTALLY ILL. It is a treasury of informed advocacy journalism and practical guidance for those whose lives have been disrupted by the afflictions I’ve been writing about.

I thank my blog administrator Beth Jones for her unfailingly prompt and professional work. And I thank my literary agent, Jim “Agent Jim” Hornfischer, for doing whatever it is that agents do. Seriously, Jim, you are a writer’s dream of an agent and a close friend. Without your encouragement and guidance, my book would never have happened.

NEW CBS WEB SERIES ON MENTAL HEALTHCARE

The crisis in mental health care is rapidly becoming a featured topic of mainstream journalism.

CBS News has commendably chosen to spotlight this subject as the launch-point of its new experiment in long(er)-form video journalism, making use of its online digital resources. To quote from the network’s announcement: 

CBS Evening News Uncharted: State of Mind” is a new five-part digital series airing in May with new episodes released every Wednesday. The series will examine the state of mental health care in America in conjunction with Mental Health Awareness Month. More than 43 million Americans suffer from mental illness.”

The first episode aired last night, and I repost it here. I was among the contributors, along with Congressman Tim Murphy, former Congressman Patrick Kennedy, and Dr. Glenda Wrenn, the psychiatrist and the director of behavioral health for the Satcher Health Leadership Institute.

Rep. Tim Murphy
Former Rep. Patrick Kennedy
Dr. Glenda Wrenn

 

 

 

 

Not surprisingly, the most compelling figure in this episode is an embattled mother: Rocky Schwartz, whose two sons are afflicted with chronic mental illness.  (The National Alliance on Mental Illness has estimated that 60 percent of Americans suffering from mental illness don’t receive the care they need.)

Rocky Schwartz

Battles with un-cooperative health insurance companies have cost Ms. Schwartz and her husband more than $300,000, draining their retirement, college savings, home equity loans, and other personal savings.

Roman Feeser

 

The series was assembled by a young production team headed by the gifted and determined associate producer Roman Feeser. I am honored to have been a part of the first and some of the succeeding installments in this bellwether experiment in immersive journalism.

http://www.cbsnews.com/news/mental-health-where-are-we-uncharted-state-of-mind-episode-1/

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.”