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. 

How your cat really -- as in medically -- could make you crazy

Now, it all begins to make sense: Why I am the way I am: slightly disturbed, neurotic and given to bouts of melancholia and -- new cool word I've learned -- acedia.

The cats that were family pets when I was growing up. The cats I have now -- have made me crazy.

OK, maybe I am playing with the hyperbole here. But a Czech scientist, featured in the March issue of The Atlantic, is gaining renown for his theory that a parasite, carried by cats and excreted in their feces, quietly invades human brains and contributes to mental health disorders, such as dementia and schizophrenia, and to car crashes and suicides.

Until recently, evolutionary biologist Jaroslav Flegr, 63, has been toiling in obscurity on taxoplasma (T gondii), the microbe that causes toxoplasmosis, according to The Atlantic article.

Any woman who has been pregnant will remember the admonition against cleaning out cat litter boxes. The reason? Cats -- and their feces -- are the primary source of T. gondii infection in humans. Doctors have long recognized that if a woman becomes infected with the parasite during pregnancy she can transit the disease to her fetus, where it can cause brain damage or death.

I first heard about toxoplasmosis when writing about AIDS in the early 1990s. It was one of those opportunistic infections that afflicts AIDS patients, with their weakened immune systems, and causes dementia in the end stages.

Many people carry the parasite: more than half the people in the world and about 11 percent of the population in the United States, according to positive results in national health screenings. For most children and adults, the infection at most causes mild flu-like systems. Conventional medical thinking says the parasite lies dormant in brain cells. But according to The Atlantic, Flegr and other scientists believes this 'latent'" parasite may be quietly tweaking the connections between our neurons, changing our response to frightening situations, our trust in others and, subtly, our personalities.

My husband read The Atlantic story with great interest. He has schizoaffective disorder -- a mental illness that has features of both schizophrenia and bipolar disorder. As he set the magazine down to tell me about the story, he looked askance at our two cats, Fluffy and Pippin, who were both sleeping at a safe distance from each other on the couch. (Five-month-old Pippin, pictured above, likes to attack 13-year-old Fluffy, hoping she'll play with him; she just hisses, grumbles and swats at him.)

I told my husband he shouldn't blame Fluffy and Pippin. If cat-shedding T. gondii caused his schizophrenia, it's likely he was infected when he was very young. His family  had cats when he was growing up.

Flegr himself is T. gondii positive and his passion for the subject stems from his own belief that being infected with the parasite has caused his personality quirks, The Atlantic said.

He blames the protozoan for shrinkage found in the cerebral cortexes of schizophrenia patients. In one study cited in the Atlantic article, almost all schizophrenia patients, shown by MRI scans to have brain shrinkage, tested positive for T. gondii. Another psychiatrist interviewed for the story, reviewed infection data and the MRI scans and concluded: "To me that suggests the parasite may trigger schizophrenia in genetically susceptible people."

Flegr isn't telling people to stopping having cats, The Atlantic says. He has two cats himself. He says indoor cats pose no threat because they would never be exposed to the parasite by hunting and eating rodents and other animals. Even outdoor cats only shed the parasites for three weeks of their lives, "typically when they are young and have just begun hunting."

Pippin will soon start going outside and he will probably want to hunt. During his first few weeks of going outside, we should just be sure to keep the kitchen counters and tables wiped clean.

Mental illness, Occupy protest figure into Berkeley hills homicide

On Saturday night, a 67-year-old resident in the Berkeley hills was beaten to death outside his home in a neighborhood described as an affluent area. Police have arrested a 23-year-old man, whom they found nearby 15 minutes after responding to the attack.

Two very hot-button issues have emerged in the case.  The first is that the suspect, Daniel Jordan Dewitt, suffers from paranoid schizophrenia, his mother told the Oakland Tribune. The second is that police didn't respond to a first phone call made from the victim,  Peter Cukor, because officers were tied up in monitoring an Occupy protest that was moving from Oakland into Berkeley. 


Comments are streaming into a story on the case posted on the Berkeleyside blog.

With DeWitt's mother saying she had tried but failed for four years to get her son checked into a long-term mental health facility, debate has erupted over the nation's broken mental health system and the rights and wrongs of institutionalizing people with mental illness. 

"I can't tell you how many times he has been in and out of the hospital," Candy Dewitt told the Oakland Tribune. She said her son didn't appear to suffer any mental health problems as he attended Alameda High School and played football. But around the time he was 18, he started to show symptoms. He was diagnosed with schizophrenia. He would go into the hospital, respond well to medication and then get released, Candy DeWitt said. Once out of the hospital, he did what a fair number of people with mental illnesses do -- he stopped taking his meds.

“Our system is such that they go in, they shove them full of all kinds of antipsychotics and put them back out on the street again,” DeWitt told KTVU Channel 2.

The other touchy subject comes from Berkeley police saying they received a call from the victim's hillside address in northeastern Berkeley at 8:45 p.m.  In a statement, Berkeley police Capt. Michael Meehan said the department received a report of a suspicious person possibly trespassing. "The caller reported an encounter with an unknown person “hanging around” his property, and asked that an officer be sent to investigate.

Because of concerns about "the potential for violence" associated with a protest march moving from Oakland into Berkeley, the department would only respond to criminal, in-progress emergency calls, Meehan said.


A "source familiar with the case" told the Tribune that Cukor and his wife arrived home, found the suspect near their garage, asking to see a woman. They told the suspect there was no one there by that name and asked him to leave. Berkeley police Lt. Andrew Greenwood said the victim called the non-emergency line and "calmly reported" an encounter with a strange person on his property.

Cukor apparently walked to a nearby fire station, possibly to summon medical help for the trespasser. Firefighters were out on a call. When Cukor returned to his property, he was pushed to the ground, dragged into some bushes and severely beaten.

At 9 p.m., Meehan said, an officer offered to respond to one of two pending "suspicious circumstances" calls. One of those was the call made from Cukor. The officer's offer was declined because the call wasn't deemed an in-progress emergency call, Meehan said. Two minutes later, at approximately 9:02 p.m., Berkeley police received a phone call reporting an attack in progress.

Within a minute, officers were dispatched and drove to the crime scene with their emergency lights and sirens going. Paramedics arrived and treated Cukor but he later died.

With regard to the claim by police that their officers were tied up, save for in-progress emergency calls, one Berkeleyside reader bemoaned the department's readiness to point fingers at the Occupy movement.

 "If we're going to point fingers at Occupy," wrote another. "Why not also point fingers at the folks who cut California's mental health budget last year?"





 

Living with Crazy: Surviving Stigma

Another blogger once chided me for using the probably politically incorrect term "crazy" in the title of my blog, CrazyinSuburbia. He said the term might offend some people with mental illness.

I told him I could see his point, but that my husband, who is also mentally ill, likes to toss the word around, usually in a joking way. Maybe by using the word--in the same way as gay men use the word "queer"-- my husband is hoping to break down the stigma associated with mental illness.

But now I wonder: PC-wise, perhaps the only people who can use the word crazy are those who are mentally ill, in the same way that only gay men can use the word "queer" and only African-Americans can use that you-kn0w-what word.

But wait! I'm not so sane myself. Seriously, I've probably lived with a mild level of depression and a high dose of self-hatred much of my life. My husband's diagnosis 10 years ago of schizoaffective disorder only added to my depression, anxiety and self-hatred. It also made me ashamed. You know, the stigma can extend to family members.

I try to get by. My husband and I together try to get by, and he is of course much sicker than me. In simple terms, his illness combines schizophrenia and bipolar illness. Before medication, he was psychotic, in and out of touch with reality. He heard voices, he saw things, he would wake up not knowing where he was or how he had spent the previous week. He also had to deal with the mood swings associated with bipolar disorder. He was not very nice to people he worked with--but more on that long, unsavory chapter of our lives at another time.

Actually, even with the meds, he still hears those terrifying voices sometimes, he'll become disoriented about time, and he'll sink into depression.

Before I go on--and speaking of stigma and mental illness--a friend and I are attending a talk Thursday evening, "Sheding the Stigma of the Psycho Straightjacket," sponsored by the Contra Costa chapter of the National Alliance on Mental Illness.The speaker is Los Angeles Times award-winning writer, Robert Jaffee, who will share his personal journey with mental ilness.

"As a writer on mental health issues and as someone who has experienced psychotic breaks and hospitalizations, Robert aims to offer insight, hope and the opportunity to overcome stigma," the NAMI announcement reads.

The talk will be part of the chapter's regular general meeting, which starts at 6:30 p..m. and takes place at the John Muir Medical Center-Concord Campus.

My friend is going through something somewhat similar to what I went through 10 years ago: suddenly learning that her bright, successful, professional, seemingly wonderful, mentally healthy husband may have a mental illness. I imagine that, like my husband, hers did a great job of hiding his symptoms from other people for years, and probably denied the illness to himself.

Even as a child, my husband was terrified of what the voices and a diagnosis would mean. He feared being ostracized by society and of being locked up the rest of his life. After we got married, he was terrified of losing me, so he never told me about the voices. He only told me that sometimes he would get depressed. He covered his illness very well, being a loving husband and father, until a crisis forced it out into the open.

In the first year or two after my husband's diagnosis, I attended support family suppport groups sponsored by NAMI Contra Costa. I also took NAMI's excellent 12-week Family to Family course, to help me better understand all aspects of mental illness, including symptoms, medications, legal issues, and, very important, what it's like to be ill and to hear voices.

But as I recently told my friend, many of the family members I met through NAMI were parents dealing with a mentally ill child. I rarely met spouses trying to cope with their husband's or wife's mental illness--either by staying together or breaking up. Having a spouse diagnosed with one of these chronic illnesses involves a different set of challenges than having a child who is ill.

It's been 10 years since my husband's diagnosis, and this is the year that I finally started to face what it all means. As you can tell, I can cling to denial pretty well and for a long time.

Just a few examples of what I'm learning it all means.

1) My husband takes a buttload of medication to keep him stable, but some of it, mainly the anti-psychotic zyprexa, has serious side effects. This drug made my formerly skinny husband gain weight and it may one day compromise his liver, cutting his life span by 10 years. He's dedicated to taking medication. He likes being sane and never wants to go back to how he felt, thought before.

2) The medications slow him down. Some mornings, it's tough for him to get out of bed. Sometimes, it's tough for him to get through the day. Perhaps the combination of the meds and the illness affect his memory and concentration, such that he will probably be limited in whatever work he does, if he is able to work at all.

This is all sad, because he is a very smart, gifted man, and he has so much to offer, not just to his family but to the community. Currently he's offering his gifts to Fresh Start, the Walnut Creek-based homeless service agency. He's very good at talking with the clients, listening to their fears and helping them solve the immediate problems facing them.

3) Life is not what I expected it to be when we married 20 years ago. For the last 10 years, I've been living with a combination of denial and terror. I was in survival mode. The denial may be lifting but the terror never goes away. And with my husband's illness and this economy we're all dealing with, I'm back more than ever to survival mode.

I wish I could go through the rest of my life, saying the right things, doing the right things, and looking really lovely and noble--like Jennifer Connelly, who won a Supporting Actress Academy Award playing the wife of schizophrenic Nobel Prize-winning mathemetician John Nash in the 2001 film A Beautiful Mind.

Yeah, I agree that the film, though it won Best Picture, Hollywood-ized the real story of John and Alicia Nash. In the book by Sylvia Nassar, on which the film is based, both characters come out as much more complex, flawed, and therefore more human than their movie counterparts.

Still, I'd love to be able to occasionally pull out a line--brimming with love, support and hope-- like the one Jennifer Connelly says to Russell Crowe at a key moment in the film:

"I need to believe... that something extraordinary is possible."