Time Passes -- Part 1

On late Saturday, about 10:30 p.m., my 88-year-old mother called to me from her bedroom as I was getting ready for bed.  She was sitting beside a dresser and pointing to an open drawer, stuffed with letters and cards from all sorts of people -- her older sister, some nieces, her grandchildren. The correspondence went back 10, 20 years. "Should I get rid of some of these?" she was asking me.

"Oh no," I said, the writer/journalist/investigative reporter in me thinking, you don't throw away people's letters. Aren't they a part of one's history? Other peoples' memories?

My mother and I sometimes have different ideas about things you keep and things you throw away. She has always liked to keep things tidy, whether it's the spice rack or the carefully folded -- as if ironed -- leftover plastic bags from Safeway.  She doesn't have a problem throwing things out that she deems not useful, things that take up space. Very few of my childhood notebooks or private art projects are saved anywhere -- ones I can remember vividly working on quietly in my room. I wish I had made more of an effort to save them myself because these worlds meant a lot to me at the time. I wonder now, if I could look at them, maybe I could uncover a new understanding of the choices I've made in life, the roads I have taken that have landed me in the place I am now.

Meanwhile, my mother keeps all her piano books from childhood, her vinyl records of classical music records, and my father's Navy uniforms. She has kept his last pair of glasses, and carefully arranged photo albums of each of us kids. Of the records, she has recently been playing what was once a semi-controversial 1962 comedy album, "The First Family" -- a satire about life inside the JFK White House. Yes, the JFK years were in some ways the Camelot years for my mother. They coincided with my father becoming principal for the first time of a high school, Del Valle High, near the Rossmoor retirement community. The school was state of the art at the time and staffed by young, enthusiastic teachers who became my parents lifelong friends. Some of them are now dead.

Aside from our differing views of mementos that should be saved, my immediate thought at my mother's sudden request Saturday was how odd it was for her to be approaching me about a drawerful of letters at this time at night. It's something she'd bring up on a weekday morning, or earlier in the evening. But that Saturday night, her face was pointed with some strange new urgency, as if she knew something was going to change soon.

Early the next morning at about 1 a.m. Sunday, my husband heard her call out both his name and other names he didn't quite recognize. She had fallen in her room, in the dark, as she was getting out of bed and trying to make her way to the bathroom. We found her in her nightgown and robe, sitting on the floor, looking slightly confused. And then she showed us she was in a lot of pain when she moved her arms one way or another in attempt to hoist herself up from the floor. She fell back down. The pain was in her chest, and it hurt her to take a deep breath. We urged her to keep still, and called 911. We wrapped her in a blanket. She was vague about what happened in the dark, what piece of furniture she had fallen against. Maybe she had hit her head on the way down. She wasn't sure how long she had been sitting there, and maybe she had spent a few minutes crawling to the center of the room.

The ambulance came, with the paramedics, who were able, on that clear, cold Saturday night, with temperatures hovering in the 30s, to help her walk out of the house and into the ambulance. My husband told me to stay home. He would meet her at the emergency room. Selfish me, I was glad to be spared an overnight ER session. The excuse was that I should be home to greet our son in the morning, but I also thought, I'm sending my husband, whose own medical condition -- schizoaffective disorder -- means he should be getting a good nights' sleep. Instead he's going off to the ER land of artificial air and uncomfortable waiting room chairs. At least, I thought, he's got a good relationship with my mother, and he's good in these kinds of medical crises. I recently said to him, after writing a story for the UCSF School of Nursing magazine, about the growing number of men in nursing, that he would have made a good nurse.

As I've mentioned on my Facebook page, my mother, after X-rays and a CT Scan of both her chest, torso and head, was found to have two fractured ribs and a fractured sternum. Not much you can do about these in the way of surgery or wrapping them up. In fact, the course of treatment was to get my mother up and moving as much as possible, without letting her move in ways that would re-injure her broken bones. They gave her pain meds, and got her up out of bed, to walk around using a walker.

The doctor was very adamant -- that from now on she needs to use a walker. This order somehow tells us we have entered a new phase in our lives and in her fragility. Her balance has been a bit off for quite some time. There is weakness in her feet and legs, though she presumably can start counteracting that weakness with exercises she's learning in rehab for the next few days at a skilled nursing facility, which just so happens to be located off Tice Valley Boulevard, on the property that once housed the long-shuttered Del Valle High School.

On the Sunday and Monday after the fall, she was kind of out of it, disoriented, forgetful of people she had just talked to a few minutes earlier.  Her speech was slurred. No doubt, the pain meds were contributing to her disorientation. But then I worried: Had she suffered a stroke? One of her doctors mentioned that her chart noted an earlier visit -- years earlier -- where it was suspected she had suffered what they call a trans ischemic attack, a mini-stroke. The doctor speculated that she had suffered one just before her fall early Sunday morning. That could explain her confusion about her fall.

I started to wonder if the attack had started to happened hours earlier, after she returned at 7 p.m. Saturday from a party of old friends -- teachers and administrators my father used to work with at Del Valle High Scool. She walked into the house with a dish left over from the party and put it in the fridge. My husband, son, and I was were sitting having dinner, a bit tired from an all-day wrestling tournament. She sat down on the sofa near us. Usually, when she comes home from one of her parties, she regales us with old gossip, tales of people she saw, or about people who couldn't make it because they are in the hospital. Or people who are dead. The names passing from her lips are names of people I knew growing up.

She didn't say much as we ate dinner. She actually seemed out of breath, which is unusual for her. She's in pretty good shape, and never had any problem climbing the front steps to our house. But she was out of breath and quiet, and then my son overheard her mutter something, like "Merry Christmas, Bill."

Bill is my father's name. My mother, who believes in her version of heaven, is not afraid of dying, because she believes she will rejoin her husband of nearly 52 years somewhere in the afterlife.

My husband eventually heard from nursing staff at both the hospital and the nursing home that her confusion on Sunday and Monday is normal for older people who have been in a fall and who are in pain. It usually goes away after a few days. So, maybe she had not suffered any kind of stroke after all, but I'm still not sure what was going on Saturday night.

Yesterday, I gathered up some of the letters from the drawer she was worried about to take to the nursing home. She was sitting upright in a chair, feeling chatty about her day, her two rehab sessions, feeling fairly strong and confident -- and to the chagrin of us and her health care workers -- reluctant to use her walker. Yes, the confusion was gone.

I handed her the envelope of letters and told her it would be nice to save them, and pointed out, for example, a long letter from a favorite niece dated 1998. There was probably lots of important information about the niece's life in that letter.

My mother appreciated getting the letters, and I told her I would remove them from the drawer, and put them in a box, to free up space in the dresser. And then, with the box, she could take her time organizing them. My mother worked as a library assistant for the Contra Costa County Library system for some 20 years, so she loves the task of organizing, sorting and labeling.

"Do you think I should organize my date or name?" she asked.

"Name," I suggested.  She nodded and agreed.

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. 

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."

Waking up to Crazy

As I've written before, my husband has a serious mental illness. It's called schizoaffective disorder, which is a combination of bipolar illness and schizophrenia. That means, he has some of the symptoms of both the mood swings of bipolar disorder and the delusions, voices and paranoia of schizophrenia. In his case, he tends to be crippled by bouts of depression. As for the schizophrenic symptoms, well, they have come back recently, unfortunately, sadly.

In the past few months, he has enjoyed a period of feeling "pretty good." But that is starting to unravel.

He recently started a job, working for a very nice man he used to work for, and in a workplace that is low stress and with co-workers who are easy going. This casual, easy-going atmosphere is a big change from his former job. As in that last job, this one involves writing and editing but without all the annoying management responsibilities. (Yes, the writing and editing are occupations that are in the family.)

Lately, my husband and I have been checking in every morning, talking about our respective daily "dread." Basically, we ask each other, "what are you dreading this morning? What's your dread about right now?"

My morning dread tends to involve the endless list of things I have to get done each day to keep the Walnut Creek Patch news site going--writing and reporting my stories; assigning stories to freelancers; editing their work; making sure we're not missing anything; paying freelancers...

Over the weekend, my husband told me that his dread involved some kind of document he finished writing and editing last week, and that he was worried about mistakes he had made.

In all the time my husband and I have been together, I have rarely heard him talk about mistakes he has made at work--either small ones or big ones. At school and in the early part of his work life, he was always a bit of a whiz kid, and I'd always hear from his college friends or colleagues about how wonderful and brilliant he was. He is the smartest person I know. He soared through school, as a National Merit scholar and all that, and as a brilliant boy from a poor small-town family he was offered full scholarships to Yale and Northwestern. His professors in the Communications Department at Northwestern wanted him to continue on and earn a Phd.

That was long ago. He was sick back then but he somehow found ways to hide it. These days, he's not hiding his illness. Over the weekend, he told me he was feeling dread about some mistakes he made on a document. It sounded like the ordinary sort of dread a lot of us feel about an assignment we've completed, wondering, worrying if we did it correctly and whether we disappointed people. I said, "well, you can fix it on Monday, can't you?" And, he said, "yes."

During this morning's "dread" check in, he broke down and said that he was having paranoid thoughts about the mistakes he had made with that document, that people he worked with would be really upset with him. He said he knew that his thoughts were not real. "They're crazy," he said.

But he can know these thoughts are crazy, and I can say, "Yes, that's right, it's probably not that big of deal," but he can't stop the desperate, self-hating voices from flooding into his mind. He started to cry: "I can't control my thoughts."

"I'm sorry, I'm sorry," he kept saying. He was apologizing for not being well, for being sick, and for being crazy.

I asked, "Do you want to keep working?"

In his typical way, he sighed, wiped his tears, and checked the clock. He said it was time to get ready for work. He went to take a shower--and some extra medication to calm those wild, racing thoughts. He came out of the shower, saying he felt a bit better, and we both agreed that we would see how things went today. He'll also reminded me that he had an appointment with his psychiatrist Thursday.

From what I understand about the debilitating effects of his illness, it can be pretty tough for people with this illness to function, certainly in a job. My husband has said he wants to work, and I've heard from advocates for the mentally ill that employment contributes greatly to patients' self-esteem and overall well-being. Work, of course, can be stressful for any of us. For people with mental illness that stress can trigger some pretty horrible symptoms.

My husband, though, is likely to want to keep going. Despite his illness, which began to plague him when he was a child, he managed to accomplish quite a bit in his life. He once told me the reason he works hard to never give into his illness, why he didn't let it stop him from achieving certain goals in school, work, and in his personal life--including getting married and having a child.

That reason was: "I don't like to lose."

You can read my husband's version of the day at his blog A Life with Mental Illness.