Mental illness: Stigma starts at home

In the aftermath of the horrifying killing spree at Sandy Hook Elementary, there has been lots of renewed attention on mental illness: how to keep the few mentally ill people who are violent from getting their hands on high-powered firearms; how our dysfunctional health care system fails to provide adequate treatment to people with mental illness. 

As usual, it takes a tragedy like this for Americans to summon the political will to consider budgeting more money for treatment programs. And, maybe a tragedy like this nudges people to want to better understand conditions like schizophrenia, bipolar disorder and depression, as well as autism and Asperger’s.

Circling around all these discussions are yet more calls to reduce the stigma around mental illness. 

“Stigma is out there and it makes people feel damaged, lesser.”

So writes Elyn Saks, a professor at the USC Gould School of Law, who described her life with schizophrenia in her 2009 memoir The Center Cannot Hold: My Journey Through Madness. A recipient of a MacArthur Foundation “genius grant,” Saks said in a 2011 Huffington Post blog that she continues to confront stigma, even though she has found, through a combination medication and therapy, a way to lead a fairly stable, happy, functional life. 

Many people with mental illness aren’t so fortunate. They don’t get the treatment they need. And it’s not always because of lack of resources. It’s because it's terrifying to take on the label “mentally ill.” That identity can have pretty far-reaching consequences in terms of gaining--or not gaining—work and housing and in moving through society. Many people with undiagnosed mental illnesses fear being locked up, or are at risk of losing relationships. Stigma, writes Saks, “encourages people to be in the closet when being able to get help from friends, when one is suffering, is very important. Stigma's worst effect is that it deters people from accepting their illness and agreeing to treatment. If mentally ill people didn't have the added burden of stigma, maybe more of them would seek treatment.”

My husband has schizophrenia, which affects about 1 in 100 people around the world, regardless of social, cultural or economic background. More accurately, he has schizoaffective disorder, which can most easily be described as a combination of schizophrenia and bipolar disorder.

He was diagnosed in 2001, and he’s actually a rare case of someone living a stable life -- though his stability is all relative. He still has many bad days when he wonders if he will ever feel any kind of happiness or joy. According to a University of Virginia study, he is in the small minority of people with schizophrenia who have remained  out of the hospital for 10 years or more.

He diligently takes his medication, even though it sometimes leaves him feeling sluggish and makes it hard for him to concentrate, causes his hands to shake, and puts him at high risk for diabetes and liver problems. He takes his medication because he prefers to be free of voices tormenting him all the time and telling him he's a piece of shit. The medications quiet those voices, and allow him to be a loving husband, father, brother and son-in-law. He balances our checkbook and looks after things around the house. He has been able to volunteer for his church and other local organizations, perform fairly well at jobs, though he’s unfortunately found that certain high-stress work environments bring on his most debilitating symptoms – the hallucinations, delusions and paranoia.

He faces stigma fairly constantly. Look, we live in a community where college-educated, professional couples like us, at this point in our lives, should be facing such major decisions as what type of counter tops to put into our new $100,000 kitchen remodels. I surely do envy people who have these sorts of choices to make. We might, in the next few months, be able to afford to buy a few new decent kitchen knives. 

Anyway, my husband is fairly open about his illness, but being open has put him at risk of losing job prospects or of people politely avoiding him in social situations. 

But as I write about how society stigmatizes the mentally ill, it occurs to me that I’m only just hovering around the truth. 

That’s because I think the greatest stigma he faces is at home. For one thing, he says he stigmatizes himself. As he writes in his blog: “My near-constant message to myself is that I am incapable of work, friendship, fatherhood, marriage - the list goes on - because I am mentally ill. I stigmatize myself, believing that I am too broken, too afraid and too dishonest to be someone other than a weak, narcissistic, crazy man. I live with fear surrounding almost every action, thought and encounter. Doing nothing and believing in only the worst are ways I protect myself. I disconnect because I am afraid of my feelings and this feeds my lethargy, isolation and depression.” 

What he doesn’t write about on his blog is how I treat him. He's very kind and circumspect in that way. He assures me that I am always loving and kind but I don’t believe him.  I stigmatize him, too.  I go through periods of being angry and being disappointed that he is sick. I have been quick to blame him for problems in our marriage or in our family.

I feel shame that he's sick and that we don't have certain things, decent health care coverage among them. 

There have been times when it was tough coming home after working, to find him sitting in a chair in our living room, reading a magazine or a book, usually on Buddhism. It’s the same place he was sitting when I left the house a few hours earlier. And it’s the same book. I grumble, I wish I could just sit around and read a book, and contemplate living in the moment and how the various things that scare me -- like financial insecurity or the possibility of him having another breakdown -- might just be figments of our imagination.

Not long ago, I interviewed a law student for a publication I was working on.  In our conversation about why he wanted to become involved in health care law, he revealed that his mother had schizophrenia. He was responsible for making sure she got in to see psychiatrists and get her medication. He said his father hasn’t been very helpful. That’s because his father, an immigrant who holds onto certain traditional ideas, believes that mental illness is a weakness of character. His father, this student said, doesn’t believe his wife is sick. According to him, she is  just “acting up” or “being lazy.”

I’ve been in and out of denial about my husband’s illness since his diagnosis. I sometimes wonder if my husband is being lazy – after finding him in the chair, reading one of his books or staring into space. I blame him and I blame myself for the circumstances we find ourselves in. If I had made different choices in life, maybe we could have weathered this crisis better. Maybe if I wasn't such a big, scared child inside, I would grow up, leave denial behind and live with a measure of serenity in accepting our lot in life 

But I'm defective and broken, too. I've told him on various occasions that I’m sad he’s ill. I mourn that he’s not the husband-protector I imagined him to be when we married, and that our life hasn't turned out the way I'd hoped.  He listens very patiently, kindly. He's always been good at listening to people. He knows I’m angry and says he accepts it. 

And then I feel guilty because I think my anger and disappointment can’t help his already fragile sense of self-esteem.  I know I’m blaming him for things outside his control, for example, the way it can be a daily struggle for him to get motivated. 

There are the so-called “negative” symptoms of schizophrenia. I had to remind myself of these recently. Such symptoms are what you often see in people with depression, and the symptoms cause a lack of motivation, an unwillingness to talk much and inability to enjoy life.  Most people are familiar with the “positive” symptoms of schizophrenia: the hallucinations and delusions, the difficulty in being able to distinguish between what is real and what is imagined. These are the symptoms, we've been led to believe, that prompt violent outbursts and the horrifying killing sprees like those at Virginia Tech or Tuscon, Arizona, and, perhaps in Newtown, Connecticut. 

But the negative symptoms can be even more debilitating, according to the website Understandingschizophrenia.org. 

I know I need to do a better job staying informed about mental illness, including the latest research on brain science and treatments. I also need to stay in touch with the folks from the local chapter of the National Alliance on Mental Illness. NAMI is a phenomenal group, and both my husband and I have been involved with NAMI's Contra Costa chapter on and off over the years. I took its very enlightening 12-week Family to Family course, where I received a pretty extensive education about various mental illnesses and up-to-date information about medications.

One of the purposes of the course was to help me and other family members gain empathy by understanding the subjective, lived experience of a person with mental illness.

I'm still working on the empathy part, and I thank my husband for his love and patience with me. Maybe reading all those Buddhist books helps him stay in the moment and show some loving kindness to his often-living-in-denial wife.  I appreciate him more than I tell him. He is my best friend and the heart and soul of my life.  

Many thanks to Amber Christian Osterhout, a Saratoga Springs, NY-based artist and designer and advocate for the mentally ill, who allowed the use of her image with this post. Osterhout's award-winning Gaining Insight website offers education about mental illness in order to reduce stigma. 

The lethal mix of aggrieved masculine pride, suicide and easy access to guns in Columbine, Virginia Tech and other mass shootings -- Newton, too?

Ever since details emerged about how Adam Lanza massacred 20 first graders with a military-style rifle at a Connecticut elementary, I’ve been thinking back to that group of gun-toting Bay Area Open Carry members who came to Walnut Creek in 2010.

Remember them?

They came to a restaurant in Plaza Escuela. As you can see in this photo at left, they wore their weapons—unloaded—and ammo strapped to their belts, to demonstrate their right at the time to openly wear handguns in public. (They’ve since lost that right under a state law that went into effect earlier this year.)

Some proudly and defiantly displayed their semiautomatics, including Glocks, which have become known as the weapon of choice for mass shooters in recent years, including the assault on U.S. Rep. Gabrielle Giffords in Arizona last year, the Aurora, Colo. movie theater rampage and now the massacre of students and educators at Sandy Hook Elementary. 

While Adam Lanza killed his young victims with a Bushmaster .223-caliber rifle, loaded with ammunition "designed for maximum damage," he also carried Glock and Sig Sauer handguns that his gun enthusiast mother, and first murder victim, legally purchased. 

I remember the Open Carry guys being friendly. Their talk about being responsible, law-abiding citizens sounded convincing. But their rhetoric revealed a mindset I tend to hear when I listen to the hysterical commentators on Fox news and conservative talk radio.

They sounded aggrieved, defensive, maybe a bit paranoid, and in possession of a sense of entitlement about their gun rights. "It's time for citizens to arm up," said Gus, a 50-year-old guy from Antioch said. Gus, who had introduced his two kids, starting at age 8, to firing guns, said it was especially important for citizens to arm up because of all the murder, raping, maiming and other mayhem that is occurring in our communities.

Again, he was speaking to me in downtown Walnut Creek. At the time I didn't recall lots of murder, raping, maiming and other mayhem happening recently. I don't think brawls breaking out in downtown bars -- as dismaying as they can be -- reached that level of civil unrest. Antioch may be a tougher town than Walnut Creek, but even it does not fit the image he summoned of armed and dangerous streets and roving bands of criminals. Maybe that image fits the worst parts of Oakland, or Richmond – or Los Angeles, during the Rodney King riots. Actually, it sounds closer to the landscape of post-apocalyptic horror fantasies. Yeah, I could see that possessing a stockpile of weapons would come in handy for a Walking Dead-style zombie invasion.

I don’t mean to make light of any discussion about firearms in the wake of the Sandy Hook rampage. But it’s hard not to be mystified when some gun proponents talk about the need to arm schoolteachers or how any new gun control laws would hinder their ability to protect themselves and their families.

Suburbanites—especially white suburbanites—who constantly express fears about being victims of violent crime seriously need to get over themselves. I’ve felt this way ever since covering crime in Richmond nearly 20 years ago. Now, there’s a place where people have good reason to fear being robbed, beaten or shot, notably if they are young men of color and they live in certain neighborhoods. 

Some brave gun owners are speaking up publicly in the wake of the Sandy Hook rampage and have dismissed the idea that anyone needs a Bushmaster or a Glock or any other semiautomatic to hunt or to protect themselves and their homes.  The main reason  anyone wants to own a Glock or a Bushmaster--weapons once mostly limited to armed forces personnel and law enforcement--is because they are fun to shoot, these gun owners say. 

 “I am a gun owner. I am an avid hunter. I have a weapon in my home for protection. I support — for the most part — the Second Amendment," writes John P. Lopez, a Texas radio show host. “But never has it been more clear that the United States should ban and buy back semiautomatic weapons. They kill. They kill children. That is their sole purpose — to kill.”

Lopez says that he has many friends who will argue that semiautomatics are their hobby and passion, and they like to shoot the guns in remote locations. “I hope they enjoy shooting these weapons at trees. Because having that right also gives disturbed individuals the right to kill children”

This love for the culture of guns and for shooting big powerful weapons, embraced by some of the Open Carry guys I met in Walnut Creek in 2010, fed into the thinking of the perpetrators of murder-suicides at three U.S. schools since 1999, according to a 2010 study “Suicide by Mass murder: Masculinity, Aggrieved Entitlement, and Rampage School Shootings.”

The study’s authors, Rachel Kalis and Michael Kimmel, with the Department of Sociology and SUNY Stony Brook, examined three mass shootings that ended with the perpetrators killing themselves as law enforcement moved in: the 1999 Columbine High School shooting that left 12 dead and 21 wounded; the Virginia Tech shooting that killed 32 and wounded 17; and the 2008 rampage at Northern Illinois University that killed six and wounded.

The shooters in the three tragedies share several characteristics, according to Kalis and Kimmel,who is one of the world's leading researchers on men and masculinity. With Stonybrook's Center for the Study of Men and Masculinities, he was awarded a John D. and Catherine T. MacArthur Foundation grant. 

“All the perpetrators were males, all were students in the rural or suburban schools they terrorized, and all evinced a self-justifying sense of righteousness to their actions,” the authors write. “Feeling aggrieved, wronged by the world – these are typical adolescent feelings, common to many boys and girls. What transforms the aggrieved into mass murders is also a sense of entitlement, a sense of using violence against others, making others hurt as you, yourself, might hurt.”

Connecticut police are still sorting through the remainders of Adam Lanza’s life, interviewing people who knew him and his family, to try to figure out what he was thinking in the days and months leading up to his mass murder and suicide. Was there something going on in his world or in his head that told him he had to kill other people, then end his own life? There are reports that his mother talked about wanting him to get out of the house more, or that she planned to move the two of them to Washington state. 

In any case, his actions show someone who wanted to make a point with his death, by targeting a school filled with young children. Connecticut authorities say he went to Sandy Hook elementary with enough ammunition to kill everyone in the entire school.

Not only are school shootings done to get a point across, access to high-powered weapons was crucial to carrying out their plans.

“These young men were all socialized to see violence as a way to prove their manhood,” Kalish and Kimmel write. “Additionally, they were socialized in an environment that provided access to firearms.”

We know that Adam Lanza was definitely socialized in this environment. His mother helped teach him how to shoot, and he lived in a community populated by gun owners, hunters and assault weapons enthusiasts. The rural, hilly areas outside Newton was home to scores of shooting ranges, including some operating under the radar.  The sound of gunfire, exploding at all hours, had become a common sound in otherwise bucolic Newton, according to the New York Times. 

Contrary to what some gun proponents argue, it’s not likely that Harris, Klebold, Cho, Kazmierczak, or even Lanza would have planned suicides that involved killing other people had they not been able to arm themselves with guns:

“The access to guns proved a crucial element of their trajectories, since without such availability, it is unlikely that these young men would have made the same decisions,” Kalish and Kimmel write. “They may have wanted to end their lives, but without access to guns, their suicides would likely not have been preceded by mass murder.”