Opening our eyes: Mental illness is all around us
by Meg Kissinger

According to the National Mental Health Association, one in five Americans suffers from a mental disorder in any given year, although two-thirds do not seek treatment because of shame or cost of care.

Who are they, and how do their mental illnesses affect the way they live? Three Milwaukeeans collaborated with reporter Meg Kissinger to tell how their conditions have changed them and how they are coping now.

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Cara Hansen Photo/ Gary Porter Cara Hansen (right) works alongside Angela Blanchette at the Mental Health Association in Milwaukee County. Getting Help Cara Hansen was on a medical leave from her job at an investment firm when she saw the ad in the newspaper 2 1/2 years ago. The Mental Health Association in Milwaukee County was looking for someone who could explain to the public what it is like to live with a mental illness. "I feel like it was fate that made me see the ad that day," Hansen said. "Believe me, up until then I had never told anyone, and I really mean no one, about my illness. I was even really nervous about mentioning it in my application, my hands were shaking, even to a mental health agency! You hear so many people talking about crazy people, psychos, all kinds of hurtful comments. I had always been embarrassed to even say the word bipolar because of what I thought people's reaction would be." Few know as intimately as Hansen what it was like to battle a mental illness every day. Hansen was diagnosed with bipolar disorder 10 years ago but has felt the impact of mental illness for more than 20 years. The condition causes her to have extreme mood swings and sometimes disorganized thinking.

I guess I knew something was wrong even before I was a teenager. I can remember the exact moment, what the weather was like, where I was standing - everything - the moment I absolutely knew something was very, very wrong. It was scary. It was also funny. I clearly remember that five minutes later, I was back home acting fine as can be just minutes after being in such a desperate spot. I couldn't understand it, so I kept it to myself.

I look back now and I can't even image why a child or a teenager would feel that bad, but they can. It's good that kids' symptoms of a mental illness are being recognized earlier now.

I had lots of stomachaches in those days, so the doctor gave me medicine to combat the aches. But what I didn't mention to the doctor was that I was also always terribly worried about everything. Not a normal worry, an extreme worry. My thoughts were always racing. I always felt sad, tired and strange. I became really good at hiding it. I was the oldest child, an overachiever and perfectionist. I always worked really hard not to let anyone know that I was "defective." That's what I called it then.

In college, I was "diagnosed" with anorexia. But, I didn't have anorexia. I knew that then, but I was too tired to get a second opinion. I just wouldn't eat. It was a way that I could punish myself for being "defective." I did the same thing by making cuts into my arms. I knew these were very strange behaviors, but I had no idea it might actually be a treatable illness. I just felt like a freak and I wasn't about to tell anyone.

Anyway, I resisted treatment even when it was offered. My mom took me to see my doctor, and once even a psychologist. But of course it didn't work because at the time I didn't care. I would quit taking my medication or miss my appointments.

Being on my own in college didn't help matters. There were lots of different kinds of totally reckless, self-destructive behavior I exhibited. From drinking to sleeping all day and staying up all night to acting out and having huge ups and huge downs. I can't even really describe what those years were like. It was awful.

When I was in college in Oshkosh, there was a group of people who always called me The Crazy Girl. In fact, for years I wouldn't even go back to Oshkosh because I was embarrassed and thought I might run into one of them.

There were some semesters when I wouldn't even go to class. Every once in a while, the resident assistant would talk to me. She would ask me if I felt suicidal. At that time I wouldn't have told her even if I were, because I still didn't care. I regret those years. I love learning and school. I think I would have really loved a more regular college experience.

I moved to Milwaukee in 1988 to start fresh and not be The Crazy Girl anymore. I was going to the University of Wisconsin-Milwaukee, and those were two really good and happy years. I guess I didn't have many bad cycles. I graduated, after lots of years of stops and starts, and got a job in human resources at a bank. This is where the story of my recovery starts.

Getting help

A few years into my job, I decided to call the employee assistance program. I don't know exactly why I first called. I guess because I noticed things started going downhill again and I didn't want to lose my job. It was a big step. The therapist recommended that I see a psychiatrist. I did.

She diagnosed me with bipolar, and I started getting treatment.

Still, it took a long time for me to get the right medication. Over the years, I'd be really happy one minute and very sad a few hours later. Not a normal level of happy or sad, extreme. There were days when I could not get out of bed until 5 or 6 at night. It took energy just to open my eyes or turn over in bed. I had a pet rabbit and, I swear, some days I only got out of bed to feed the rabbit.

Other times, I couldn't stop thinking or slow my head down. Sometimes I'd talk endlessly. I couldn't focus or concentrate. I never slept. To me, the best thing to happen was when I finally accepted the fact that I have a mental illness, to stick with treatment, and, finally, to be OK with the fact that it was just that - an illness. Doing all that took a long time, but I'm better now because of it.

I didn't tell anyone for so long and kept things hidden because of what I thought other people would think. I hope that other people will speak up sooner if they need to. I know now that I will still have mood swings, but now I also know that they won't last forever, and they won't get the best of me. I have a great doctor and a great psychologist who I know will help me when I need to adjust my treatment. I take my medication and I get counseling.

One thing I have to say is that I've been extremely fortunate to have had medical insurance and been able to have consistent treatment over the past several years. Not everyone has that "luxury." I think that things would have turned out very differently for me if I hadn't had insurance. There is no way I could have paid the full price for my medication.

My mental illness will always be with me. It took a long time for me to get out of denial, accept it, and be OK with it.

I've been doing well for several years now. I own my own home. I have a good job. Friends and family. I no longer think of myself as "defective." I have an illness that is real and treatable.

The evidence says that the best way for people to learn more about mental illness and to break down stereotypes is to know someone who has a mental illness. And, most people do that without even realizing it. Things like depression and anxiety are more common than people know or will admit. It could be the person in the cubicle next to yours at work or someone who lives down the block, or a family member - or you. For some reason it often seems to surprise people when they find out I have bipolar. And if, for whatever reason, people can relate to me and my experience, learn more about mental illnesses, or change their stereotypes, I'm glad about that.

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Michael Motamedi Photo/ Gary Porter Michael Motamedi, who is a registered nurse, was in graduate school at the University of Wisconsin-Madison when he suffered a series of psychotic episodes. Overcoming Isolation Michael Motamedi was 20 years old the first time his mental illness flared up. He was in his junior year at Washington University in St. Louis when he suffered what he calls a "nervous breakdown, stress mixed with depression, no real big deal." Seven years later, the big trouble would arrive. While studying for his master's degree in statistical biology at the University of Wisconsin-Madison, Motamedi suffered from a series of psychotic episodes. His mind wandered. He hallucinated and had episodes of magical thinking. Then 28, he started having paranoid thoughts, imagining that his father was out to get him. He struggled like that for four years, not getting treatment or medication. "My dark period," he calls it. Eventually, he agreed to be evaluated by doctors in Chicago. He was diagnosed as having schizoaffective disorder, a thought disorder like schizophrenia with the emotional instability of bipolar disorder. There is no known cause or cure. But medication helped Motamedi get in control almost immediately. "I could almost feel my cloudy, muddled thinking clear up overnight," he said. But it would take years of therapy to teach him how to manage his symptoms. In 1993, he enrolled at Marquette University where, five years later, he got a bachelor's degree in nursing. He now works as a registered nurse for an organization that provides community services for adults with developmental disabilities or chronic mental illness. Motamedi is a member of the Grand Avenue Club, a social, educational and vocational clubhouse for adults with mental illness, run by and for its members. Occasionally, he gives talks on living with mental illness. Motamedi lives in West Milwaukee with his cat, Muffin.

Mental illness distracts you from knowing who you are.

You can have a full and happy life, but you have to work at it.

When you have a mental illness, you have an ordinary life just like anyone else. People think of mental illness like a freak show. The truth is, I can just be the guy down the block. We struggle with symptoms just like anyone else. I'm doing well on maintenance medication but, still, I get low energy or a little bit of depression every now and then.

You have to put your life back together after a breakdown. I have a guy who I mentor. He is always talking about wanting to "get back to Camelot," the way things were before he got ill. I suffered with that kind of longing, too. It's a kind of death, or grief, to have mental illness. You suffer a severe loss. There are things you can't do, ways you cannot be anymore because of your mental illness. It's hard to let go.

The problem is, you can't go back. Only forward.

Mental illness is an invisible illness. There are plenty of doctors and lawyers who have this disease who will do anything to keep it quiet. They'll pay for their care out-of-pocket just so that there is not a record of it anywhere. I used to be that way, a little bit. But now I want to be more real about it, to be accepting of what I have.

As I get older, I have learned of ways to cope with the symptoms. I exercise. I make sure that I eat healthy food and that I get enough sleep. I took a class on how to manage symptoms at the Grand Avenue Club, which helps people like me, to make sure my symptoms wouldn't flare up again.

I have to take medication to make my symptoms manageable.

The key is learning how to appreciate yourself. Mental illness is not an easy thing to deal with. You have to be gentle to yourself. You need things to look forward to so you don't get stuck in the past. That's kind of a grandmother's wisdom, but it works for me.

Overcoming isolation

When you have mental illness, you have a tendency to be isolated. It's important to work at cooperation and communal behavior. If you drift more and more into isolation, you could become that lone wolf who goes postal. That's why I joined the Grand Avenue Club. It's a place where we can be together and talk about ways to cope. I don't want to hide from my illness.

There are two types of stigma - external stigma and internal stigma. You can't always control what others think of you. But you can work on getting a better image of what you think of yourself. You can bust some of that internal stigma. I am working on accepting myself more. You have to learn to appreciate yourself, because this is not an easy thing to deal with.

If you think of yourself primarily as a person with mental illness, you're going to get stuck in that. You need to make mental illness incidental to who you are. You are a father first, or a student or a worker who just happens to have a mental illness.

The guy I mentor is in college now and just getting through his first real bout with a mental illness. I tell him, "You've got to quit looking in the rearview mirror. Concentrate on the road ahead."

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Cheryl Banks Photo/ Gary Porter There was a time when Cheryl Banks was either awake for hours on end, or sleeping for hours on end. Now she's taking writing classes at the University of Wisconsin-Milwaukee and helping out in the clubhouse where she and others with mental illnesses get services and a chance to socialize. Working Through Difficulties All of her life, Cheryl Banks has been tripping over her heart. "I'm too sensitive for my own good," she said. Diagnosed with depression, then post-traumatic stress syndrome from her time in the Army Reserves, Banks still has a hard time sleeping and keeping her emotions in check. She talks about how her mental illness unfolded and how it has affected the way she lives.

I started sleepwalking when I was 19, in the Army Reserves. I guess that was my way of coping with stress. It got so bad that I had to quit. I moved home and got a job as a map recorder with a utility company. But I started having problems getting along with people. So, I quit. I worked for a while at the Milwaukee County Courthouse as a docent. But the medicine I was taking was making me too tired. I didn't have any energy.

After that, I could hardly get out of the house. There were times when I would go for days without sleeping and then stretches when I couldn't do anything except sleep.

When you are sleep-deprived, everything looks bad. I would literally go into a closet, curl up in a ball and pretend I wasn't alive.

There was no middle ground for me. I was either sleeping or I couldn't sleep at all. It was like my brain was getting too much stimulation. Any kind of noise or light would bother me.

My doctor prescribed something called Prolixin. I felt like I got hit by a bus. It made me so stiff, I couldn't put on my pajamas. Everything ached. I would drool. It was terrible.

Day after day, I would lie there in pain, too sore to move, my mind racing so much that I couldn't sleep. I'll be honest. There were times when I said, if this is the best I'm going to feel, it's not worth it.

But what can you do? You either you go on or you die.

My mother died four years ago. I had to sell the house to pay her nursing home bills. I was homeless for a while after that. And I spent some time at the county's Mental Health Complex. After that, I lived for three years at St. Catherine's Residence for Women on the east side. A few months ago, I got my own place on the east side.

Working through difficulties

I'm managing now, but I still have my rough spots.

One of my problems is that I get psychotic from time to time. I have some wild thoughts. For example, I look over there across the room, and I see those coffee cups stacked up and lying on their side. Those openings in the cups worry me. I think that they might be sucking my brains out. That sounds crazy, I know. That's how I think sometimes.

I'm not as quick on the draw as I used to be. I have a kind of fog over me. I can't answer things quickly. It might be the medicine. But I don't want to blame the medicine for everything. It's the illness. I wouldn't be on the medicine if it weren't for the illness.

People make assumptions about you when you have a mental illness. They think you're stupid. They treat you as if you're a third-class citizen.

I'm taking classes at University of Wisconsin-Milwaukee now, mostly in writing. I come to the Grand Avenue Club (on E. Michigan St., downtown) three to four times a week. I work as a clerk in our gift shop, the Ain't It Grand Shop. I sell stamps and bus tickets; sometimes, I answer the phone.

I also help to edit the Phoenix, the club's monthly newspaper. There are a lot more things that I would like to do. I would like to go on a trip. I'd like to get a job, again.

Relationships are tough for me. I don't have a lot of friends.

I don't know what will happen to me in the years to come. Things get good and then they get bad again. There's no real way to know. Right now, I guess I'd have to say that the glass is half full. It's not the greatest, but it is what I have.

For help with living with a mental illness, or for more information, call:
National Alliance for the Mentally Ill of Greater Milwaukee: (414) 344-0447
Mental Health Association in Milwaukee County: (414) 276-3122
Crisis Intervention Hotline: (414) 257-7222
Grand Avenue Club: (414) 276-6474

MORE INFORMATION

Bipolar disorder:
www.mhsource.com/bipolar
www.nimh.nih.gov/publicat/bipolar.cfm#bp1
"An Unquiet Mind" by Kay Redfield Jamison (Vintage paperback, $12.95)
"The Beast: A Journey Through Depression" by Tracy Thompson (Plume paperback, $13.95)

Schizoaffective disorder:
www.nmha.org/infoctr/factsheets/52.cfm,
www.merck.com/mrkshared/mmanual/section15/chapter193/193e.jsp

Post-traumatic stress syndrome:
www.ncptsd.org,
www.nimh.nih.gov/anxiety/ptsd.pdf

From the April  4, 2004 editions of the Milwaukee Journal Sentinel : www.jsonline.com

Story reprinted by HopeToHealing.com
with permission of Meg Kissinger.
© 2004 Meg Kissinger