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May 17, 2011

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."

1 comment:

lorrielovesparties said...

Hang in there and thanks for sharing. Love your blog.