I am always honored when someone wants to interview me or write an article about me. Having our voice heard seems like a human need to me, and I am thankful for those who amplify mine. I hope you will follow Rachael’s podcast A5ylum and listen to her interview with me.
I can name at least a dozen people with schizophrenia that are doing remarkable things. Three of the people I am thinking about have started non-profits to raise awareness or funds for the treatment of the illness. One woman started a business; one woman is an actor; one man is an incredible artist, screenwriter, and father. Of course, many people with schizophrenia write about their experiences as is evidenced, by the number of essays and memoirs on the topic (including one I wrote that I wish would disappear because I could write something so much better now).
Maybe, none of the things I wrote surprise you about people with schizophrenia. Perhaps, you have always known that people with the illness could live productive, creative, meaningful lives. What you might not be aware of is the network that exists between some people who have the disease. I belong to a group on Facebook started by one of the founders of the non-profit, Stigma Fighters, and everyone in the group has schizophrenia or schizoaffective disorder.
It might surprise you to know that occasionally one of the group members will experience suicidal ideation and other group members will call them on the phone, talk to them, make sure they are safe, schedule check-ins, and possibly call someone in their area to do a welfare check, or if all else fails, call the police.
Recently, I was talking to my psychiatrist about talking to other people with schizophrenia in the middle of the night because they were hearing voices, or considering harming themselves. My psychiatrist was as surprised by this as I am. And I am surprised that we, those of us with the illness, provide this level of critical care to one another because it seems alarming to me that people that are considered by so many people to be incompetent in one way or another are reaching out, stepping up, and possibly saving lives.
Why do we do this? We do it because there is a big hole in our mental health care system. Seriously, think about the fact that those people who belong to one of the most stigmatized and vulnerable groups in society, step up and care for each other because often there is no one else to do it. We don’t have enough hospital beds; we have areas in the country that don’t have a single psychiatrist (psychiatric deserts), and the police are not adequately trained to handle mental health crises even though they are frequently the first responders.
I wanted to write about this reality so that people would be aware when they think of the illness of schizophrenia that many of us who have the diagnosis care for those who might otherwise slip through the cracks. It’s a broken system, and we are trying to patch it together and be a safety net one crisis at a time.
Yesterday I read a short piece in Psychology Today (June 2019) called, “A Trick of the Mind.” The article introduced the words, nocebo effect, and the more common placebo effect regarding an experiment conducted by Brad Turnwald, a doctoral student at Stanford University and the lead author on the study they reported on.
The article was about an experiment where they told people that they were either predisposed to obesity or that they had a gene that protected against it. They tested the groups by having them exercise before they were given the genetic information and after. The people who believed that they were predisposed to obesity had a decline in performance on the exercise test after being given the negative information and the people who thought they had protection against obesity performed better.
Most of us are familiar with the placebo effect because we have heard it used in medications studies where people are given a sugar pill and feel better based on their expectations and possibly hope. I had never heard of the opposite, nocebo effect, though. Meaning those who are given negative information/expectations do worse.
When I received the diagnosis of schizophrenia, the doctor said, “I have bad news for you.” For over a decade I had lived with the belief that I had bipolar disorder and no one had ever said that was bad news. I had episodes of psychosis, and when I would fully recover, I would go back into the working world. I traveled and had lots of friends. I hiked. I played racquetball, practiced yoga, and I lifted weights. I had many friends and sat on committees for the city and graduated from an intense year-long leadership program. I regularly took classes to increase my knowledge or for fun.
My life looks completely different now. I have developed an anxiety disorder. I have a lack of motivation (different from being lazy), I can’t seem to find a job that I can manage (I apply for work regularly). I have fewer friends and am involved in far fewer activities, and the activities I am involved in are almost always things I do alone, like take a walk or write in journals. I have lost the motivation to make and keep friends.
I wonder if my psychiatrist had told me, “You have schizophrenia, but it isn’t going to make a difference in the way you live your life,” if that would have made a difference? I wonder if celebrities came out and said, “I have schizophrenia or schizoaffective disorder,” if that would make a difference? I can count the role models who have schizophrenia and are relatively famous (and only famous inside the mental health community, not the general population) on one of my hands. I can’t count the number of times I had read these words from parents when their child received a diagnosis, “Every parents’ nightmare.” I can’t count the number of times I have read that the average life expectancy of someone with schizophrenia is over 28 years less than the general population. I can’t tell you how many times I have heard jokes, seen stereotypes in movies and portrayed on the nightly news. I can’t tell you the number of negative messages I have had to filter through my brain and soul since I received the “bad news.”
I wonder, I really do wonder if the way we presented schizophrenia wasn’t so dire if people’s outcomes would improve? The studies done on placebo and nocebo seem to suggest they would.
This afternoon I was going to a used bookstore where I have $50 in credit from books I sold a month or two ago. I am attending a poetry workshop next weekend, and I offered to find odd books on hobbies for a poetry exercise that I encountered in graduate school and that helped me create my most widely published poem. The poem is about marriage and divorce, and I used fishing lures and tying knots as the metaphor.
The used bookstore is in a very congested part of the city, and we were lucky to find a parking space about five blocks away. As we were crossing at one of the lights, some young men yelled at me, “Hey, can I borrow your poncho?” And then they all laughed, spit food, and slapped each other on the back.
I wasn’t wearing a poncho; it is a handmade purple cover-up that my mom bought me on one of her many trips to Mexico. Nevertheless, I knew the young men were making fun of me.
I know that I’m not a fashion icon. When I was young, I tried very hard to be a unique and fashionable dresser. I often set trends or was way ahead of them. Setting trends and standing out in public is no longer important to me. I am happy I have clean clothes to wear.
When I was back in the car, I said to my husband, I wish I would have said to those young men, “Boy I bet your moms are proud of you for making fun of a woman who is probably her age, who has schizophrenia and often is overcome by symptoms and can’t leave the house.”
I didn’t say anything to those young men. I simply walked by while they laughed and jeered and congratulated themselves on being so funny. The incident made me sad though; it reminded me of how quick we are (within an instant) to judge people without knowing anything at all about them except maybe how they look (the color of their skin, the style of their hair, or how they dress).
As I get ready to eat dinner tonight what I am thinking about is how hard some people’s lives are and how we don’t always recognize or know each other’s struggles. Maybe, someone just lost a loved one. Perhaps, someone just lost their job, their house, or is in the middle of a divorce, or recently diagnosed with a frightening illness.
I know we see it all the time, “BE KIND.” But how do those two words that are so powerful and said so often they have almost become overlooked play out in our lives? If you find that you easily make fun of people, try to shame them, or make snap judgments about them based on the least significant thing about them (appearance). Maybe you need a refresher course in the meaning of those two simple words. I got one tonight, and I’m not sorry I did.
I loved May Day as a little girl. In grade school, we usually made small paper baskets to hang on doorknobs, and on May 1st, when I got home from school, I would fill the basket with bright purple and fragrant blooms from my mother’s lilac bushes. Then I would go to a neighbor’s house, hang it on the door, ring the doorbell and run. I am sure the neighbors always knew who had left the bouquet, but at the time I thought it was a secret and one that made me feel good.
Speaking about secrets, it is no secret that May is Mental Health Month. I am in the process of sending pitches to editors about different issues involving mental health to raise awareness in any way I can. But just because I am an advocate for mental health, I am not always speaking from everyone else’s experience. Unless I am doing research, every idea I present is my own.
I write, speak, and participate in panels about mental illness. I also follow many other advocates. One thing that is consistent across the board is that I don’t agree with every article, every opinion or every experience I read about schizophrenia. I don’t even agree with the use of language that some advocates choose to use.
Not agreeing with everything is okay, though. There is no way that thousands of people can all be in agreement about everything. I just wanted to throw this out there, so that you know, you don’t have to agree with every post I make to support me, follow me, or think that I am making a difference, and I don’t have to agree with you 100% to think you are marvelous and changing the world.
With those concerns out of the way, I hope you get an anonymous bouquet on your door today, and I hope we can work together to change the dialogue about mental illness.
Happy May Day, and let’s work to raise awareness this month! Ready? Go!
I assume that most people who make it to fifty, can look back over their years and feel as if they have lived more than one life. I am no longer the teenager who skipped school frequently and had low self-esteem. I no longer get into cars with other teens who have problems like mine and drive to Denny’s and drink coffee for hours never tipping the poor server who had to refill our cups and clean all the sugar packets off of the table.
I am no longer the young woman who is married but feels like she is playing house. Making meatloaf and garlic mashed potatoes, and trying to find ways to cook venison that will get rid of the gamey flavor. Letting the laundry stack up to a huge pile so that it takes a whole day to do it, but I did it, along with scrubbing the small gray and pink bathroom and the pink and blue tiled kitchen.
I no longer make reservations to fly to Europe or Africa, or South America and then make the trip without cell phones or laptops and somehow miraculously make it to all these countries with layovers and plane changes and cancelations and somehow make it to my parents waiting to pick me up in a place I’ve never been. And I wasn’t scared. And it all seemed normal. And I never knew that I had skills and was resourceful in ways that many people are not.
I still talk to most people I encounter in public at coffee shops, grocery stores, casinos, hotels, conferences, but I no longer invite them home with me to drink coffee or talk over a glass of wine or six-pack of beer. Where once I was fearless, I have become cautious, frightened, suspicious.
Where and what is the divide that separates one me from the other? It started with a hospital stay, but it didn’t happen clearly on discharge. The changes took years, many episodes of psychosis, hundreds of panic attacks. The changes were a slow erosion of independence, fearlessness, confidence and a carefree sense of adventure.
My mom who now has chronic pain in her back, says that a level of discomfort is her new normal. My new normal is something I am trying hard to get used to. I wave good-bye to a young woman that I never fully realized was talented, capable, and remarkable in so many ways. Before I ever got to appreciate her, she was gone, but not without leaving a memory that calls to me in a thousand ways every single day.
Lately, I have been participating in a lot of public events. For me, my social calendar is busy. I did a book signing at Barnes and Noble a few weeks ago. Not that many people showed up, but my friends, who are mostly social workers, said I did a great job with my topic of toxic positivity and how that related to the mental health guided journal I wrote (available on Amazon).
Two weeks ago, I was on a mental health panel for a large writing festival in my community. Next weekend I am on another mental health panel, and in June I will be making a presentation about my guided journal at the local women’s museum.
If you read all of this and attended the events, you would think that I am on the verge of possibly creating a role for myself (hopefully a job) in the community. What you don’t see is the effort that my husband makes to make all of these things possible for me.
My husband sorts and packs my medication. He brings extra anxiety medication in case of a panic attack. He packs snacks and water for me and carries them in a backpack. He attends every event with me to make sure that I am okay. He listens to my presentations several times so that I will be comfortable and familiar with the material that I present. He helps me get the necessary sleep, meals, etc. that I need the day before and day of an event. He cooks, cleans, drives, and takes care of all the details of everyday life.
What I am trying to point out, is my success (that I feel wildly grateful for) is the work of two people and the backbone of that work, the foundation of it, is the stuff my husband does behind the scenes.
I can’t even begin to tell you all that my husband has to do so that I can attend the occasional writer’s conference. Traveling anywhere away from home is a huge ordeal for us. It didn’t use to be this way, but we have had to adjust to new symptoms over time.
This post is simply a reality check for people who talk about people who are high functioning. My husband is what I would call super high functioning. But me? I have schizophrenia, and we deal with it as a team, a lopsided one, but a working one nonetheless.
I was interviewed in this article for Drive Magazine about humanizing schizophrenia. My part is about halfway through. If you scroll to the bottom, you can see they printed the cover of my book.
(My contribution to poetry month)
OUTSIDER AS ADULT
Like in junior high
Pick my classmates
One by one
With each name called
My name will be next
It is painful
Two or three
I am the final
On the second captain’s team
Before the game