Please head on over to Psych Central and read the post I wrote for today. You don’t want to miss the video I included in the article – it is the best.
Please head on over to Psych Central and read the post I wrote for today. You don’t want to miss the video I included in the article – it is the best.
adventure, al gore, creative nonfiction, happiness, hope, inauguration, inspiration, joy, life, mental health, mental illness, mentally ill, obama, president, presidential, schizophrenia, secret service, stories, writing
It is true that I have schizophrenia, but I have also lived a life with interesting and unique stories. Schizophrenia has not been my ruler or my king. There have been times when schizophrenia was what I had to eat, sleep, drink and breathe, but not always. I’ve lived a good life, and on most days, you won’t hear me complain about the road I have had to walk.
The picture above is me in 1996 with Vice President, Al Gore. I am the one with the light hair. We were working a catering event in Seattle where Gore was giving a speech. We had to go through a search by the Secret Service before work. There were sharp shooters on the roof at the event. During the speech, I kept walking over to several of the Secret Service agents and offering them food and asking about their jobs. One opened his coat and showed me his gun. I was such a flirt when I was younger.
Gore made sure that all of us working that night were lined up, and he walked down the line that we were standing in, and shook each one of our hands. Most people were telling him about their concerns or thanking him for one thing or another. When he got to me, I simply grasped his hand, and smiled.
A few minutes later, I asked if we could take a picture with him, and he said yes. After the picture was over, one of the Secret Service agents who I had flirted with earlier, whispered in my ear, you just hugged the next President of the United States, and as Gore was leaving in his limousine, I jumped as high as I could in the air. I hope he saw my excitement, and my reaction. We all know how it turned out in terms of who became President.
My other two brushes with political events are presidential inaugurations. I was given tickets to the last two inaugurations, once by my senator, and once by my representative. My husband and I were in Washington DC to see our first Black President sworn into office. It was history. It was moving. It was something to see. I have never been with so many people in one place in my life. I have never felt so much hope.
I have hundreds of stories that make up my life so far, and only a fraction of them have to do with schizophrenia.
My mental illness has never been my whole world. For those of you who suffer with mental illness, or any illness, don’t let it keep you from creating memories and life stories. You are more than your illness, you always have been, and you always will be.
Here’s to life! Here’s to living!
Over twenty years ago when I was working as a social worker with children and families, my colleagues would often say of their difficult clients, “S/he is borderline.” It seemed as if the diagnosis of borderline personality had burst on the scene and every client that social workers didn’t want to deal with all of sudden had it (they didn’t of course).
I’m not a social worker anymore so I am not up on the latest things that social workers talk about, but I am a participant on social media, and the same thing is going on today with narcissistic personality disorder. All of a sudden everyone who seeks attention on social media by constantly posting selfies or information about themselves is called a narcissist. Of course having narcissistic personality disorder is more complicated and disruptive than posting a high number of photos or seeking praise on Facebook or Instagram. People with this personality disorder lack empathy, and see themselves as superior to other people (to name a few of the difficulties).
I often hear jokes about having schizophrenia, but I rarely hear schizophrenia talked about with the same disdain as I do narcissism, or that I used to hear about borderline personality disorder. With schizophrenia most of the stigma comes from the media and their love of sensationalism (stories about killers, the homeless, etc.).
Now, there is a difference between schizophrenia, bipolar and a personality disorder. All articles classify schizophrenia and bipolar as a mental illness. But with a personality disorder, because it deals with character and personality some still define it as a disorder rather than a mental illness. In 2002, this article which supports changing personality disorders from a “condition/disorder” to a mental illness was written.
I hid my mental illness for almost twenty years, because of the fear of being judged and misunderstood. Thankfully, I wasn’t shamed or embarrassed into not seeking treatment though. For others it is different. The pressure not to be seen as sick, especially with a mental illness or personality disorder can keep them from getting the help they need. My psychiatrist said his patients prefer to see him in his clinic (a general practitioner’s office) because then people don’t know they are visiting a psychiatrist they assume they are there for high blood pressure or an annual check-up, or any other reason to see a general practitioner.
I want to help create an environment of acceptance where everyone who needs treatment, feels safe and comfortable to go and get that treatment. If one of us with “mental health issues” (OCD, PTSD, social anxiety, an eating disorder, narcissistic personality disorder, depression, borderline personality disorder, bipolar disorder, schizophrenia, etc.) is being targeted as a “negative” or a “bad” person by society, I think we need to step in and set the record straight.
I want everyone to know that people with schizophrenia don’t hear voices one hundred percent of the time. I want people to know we don’t all believe in conspiracy theories, or any number of other harmful stereotypes. I want the same truth to get out about other mental health issues. Not all writers are narcissist (I read an article that claimed that they were the other day), and not all people who seek constant approval and validation on social media are either. We throw that word around inaccurately in the same way we use the word depression to mean sad. “I’m so depressed today.” When anyone that has suffered true depression will tell you that it doesn’t last one day, and if you are at work, typing on Facebook, making plans to go out that night, you are most likely “sad” or “down” but not truly depressed. Depression does not equal sad or a lack of motivation. Depression is a serious illness that is deadly it is not something you feel because you missed a sale at Nordstrom’s. (“I’m so depressed that I missed that sale!”) No.
Until there is a better understanding and reduced stigma around all mental health issues, we need to speak up, and speak out. We need to correct people when they casually say that someone has narcissistic personality disorder, or that they are depressed. We need to help reduce the misinformation and negativity around all mental health issues.
The progress we make in educating about one diagnosis is a step in the right direction for all of us.
When it gets better for one, it gets better for all. No one is alone in helping make changes, we are in this together.
I’m going to the thrift store to buy a cape.
I want my cape to be long, calf length, with a little tie around the neck and a collar that stands up. If I could find something made out of grey wool, it would be perfect. Grey would match most of the things I wear. I want the cape to remind me that today, I am becoming a superhero.
I think my superhero name will be Stigma Buster.
My superhero powers will be words both spoken and written. My superhero equipment will be a tablet, a laptop, desktop computer, and a pen and notebook.
I will take this oath in front of you, and that will be my final step to accepting this superhuman role that I have been avoiding for the past twenty years. I know you didn’t bestow this great privilege upon me, I was born into it. My only hope is that I can do this job well, and not let down the millions of people who are counting on me. I know the full consequences of the position, and I am ready for my oath now. Go ahead, swear me in.
I, Rebecca, do here by commit to take on the superhero role of Stigma Buster. I promise to use all the equipment in my possession along with my superhero powers, words, to overcome stereotypes and jokes about schizophrenia where ever and whenever I encounter them. I also commit to take my medication and guard my health so I can be a successful example of someone living a “normal” life with the diagnosis of schizophrenia. I will work hard to become a writer and speaker, so other people living with the disease can look up to me as an example.
People may call me “crazy” behind my back, or even to my face. I may lose some friends and gain some enemies (even Batman had the Joker). After over two decades of hiding my diagnosis and fearing what others will think, I will take my chances.
I choose to believe people will take the side of the underdog. I choose to believe that people, when they see me, a superhero, swooping in to take a stand against stereotypes and hurtful jokes, they will join me, and thus gain some of my superhuman pixie dust that will bring joy and good will into their lives.
While I am at the thrift store, I will look for other capes, because I am hopeful that there will be an onslaught of applications for the role of Stigma Buster Sidekick. Get your pens ready, I’m taking applications now.
I want to go to Paris.
It is my husband’s and my favorite city. Every day we are there we walk miles and miles between museums, and take trips across the city on the Metro.
We always stay at the same hotel in the Latin Quarter. Every night, I buy a crepe filled with Nutella, and eat it while curled up in a cramped hotel room that we find charming. In the morning a ring of chocolate circles my mouth.
The bathroom has a window and the elevator only fits two people and even then it is tight.
I buy phone cards and call my mom most nights. Last time we were there, a pay phone was right down the street. We often spend an evening or two in an Internet café to catch up on our e-mail.
We always stop in coffee shops and order cappuccinos.
Why do cappuccinos taste so much better in a café in Paris? It’s one of life’s mysteries, but they do. They really do.
I’ll have to settle for a walk to a museum near my house, and a café where I can sip a coffee and write something in a notebook. If the music is loud, which is almost always, I will read a few poems from one of my favorite poets instead. I can’t write when there is noise.
That is as close as I’m going to get to Paris for a while.
The long trip, the medication, the anxiety, the paranoia…I’m not up to crossing the ocean even for a glimpse of Notre Dame, even for a walk along the Seine.
The jacarandas are in bloom. There are whole streets lined with purple flowers.
California is beautiful from the deserts to the mountains to the Pacific.
I can keep my windows open year round.
The food is fresh, because of all the agriculture.
There are songs about the place I live.
I am satisfied with my surroundings.
I may dream of Paris, but I have a little bit of paradise right before my eyes.
I made it! I accomplished something big. I went to a writer’s conference in Minneapolis (AWP15) for six days.
I only ran into problems once. I had an anxiety attack on the plane on the way there. The attack lasted about seventy-five minutes and was difficult to handle at thirty thousand feet in the air, but I survived.
As always, my husband was a trooper. He tried to calm me down the last half of the flight, but none of his usual tactics worked. I just had to live through sweaty palms, a racing heart, a nervous leg, and the feeling that I wanted out of my skin.
My husband was worried about how I would handle the actual writer’s conference, because there were thousands of people there, and so many panels, talks, readings, and of course a book fair with hundreds and hundreds of booths. My husband thought I would get overwhelmed, over stimulated, and have a minor breakdown.
I didn’t. I fell in love. I was so happy. I felt like I was at my very best.
I only went to two of the talks and panels. I found what interested me was the book fair with all the journals, presses, MFA programs, book signings, etc. I spent three whole days going from booth to booth to booth. Many of the booths I went to twice.
Although when I am at home, I spend the majority of my time alone without talking to any people, I was so talkative.
I told stories and jokes like how I accidently walked into the men’s bathroom, saw a man, screamed, and ran out. As they laughed, people assured me that would be the low point of my day.
I told people that I write poetry and creative nonfiction, but that I can’t write fiction, because my brain doesn’t work that way.
I told two editors that I mostly write about schizophrenia, because I suffer from it, and they were both interested in my work. One gave me his card, and told me to e-mail him some story ideas.
We saw snow for the first time in ten years.
We ate in some cool restaurants. One was called, Hell’s Kitchen. We tried to taste the local food. My husband had walleye fish prepared three different ways. We tried cheese curds, artichoke bruschetta, munched on tater tots, and had one of the best flat breads I have ever tasted. We tried local beers (well, my husband did, I don’t drink).
To let you know where my priorities are, I ended up bringing home over sixty pounds of journals, and books, and had to leave half of my clothes in Minnesota to do it.
I’m back now, and ready to write!
Before I was diagnosed with paranoid schizophrenia, I was a very trusting woman. I welcomed the world, and all the people I met, and they welcomed me. It was exciting to be so trusting, so open, and so free.
It has been years since I felt really safe and comfortable in the world. I feel safe with certain people and comfortable in certain places, but those people and those places are very few.
Because I miss the way I used to be, I am wondering if I can capture a bit of me, as a young woman, and my spirit, and train my brain to trust a little more.
I am taking two trips soon and I am very worried about the details. Normally, I think about a trip in steps; getting to the airport, getting on the plane, getting to the hotel, finding a place to get food so I can take my medications, looking around the neighborhood that we are staying in to see if it is safe. There are more steps than that, because each little piece of the trip becomes a step, and I mark them off in my head as each step or piece is accomplished.
In other words, there is no joy in traveling. I worry about each step, checking off each step, and as each step is checked off, I immediately start thinking about the next one. This is no way to enjoy a vacation. It is rather obsessive, and it strips traveling of all its adventure and fun.
On these two trips I am taking in the near future, I am going to try to relax. I am going to practice telling myself that as long as I have money, and my medication, that all will be well. Even if I don’t have money, I can get some wired to me, so again, all will be well. If the worst happens and my medication is lost or stolen, I can go to an emergency room, and tell them my diagnosis and a list of my prescriptions. Someone will help me. I am certain of it.
I will tell myself these things, and then I will try to enjoy. I will try to enjoy reading on the airplane. I will not worry about my arrival. I will try to enjoy the adventure of finding public transportation to my hotel. I will try to enjoy the days spent away from home and not think about every little step in the process of returning home.
I hope that if practiced enough, this act of telling myself that all will be well, can change my brain. The brain is an amazing piece of who we are, and who I am is not trusting. I want to be trusting, and enjoy the opportunities and adventures life brings to me.
These upcoming trips are going to be fantastic. I am going to have an adventure that changes my life (in a good way). I am going to try new food, and talk to new people. I am going to see art and architecture.
I have started the process of telling myself that all will be well. As I smile, laugh, and truly enjoy myself, the world will mirror my reactions. I can expect to trust and be trusted. I can expect to live my experiences to the fullest. I can hope to regain some of the self who was lost all those years ago.
When I was younger, before I developed symptoms of a mental illness, I loved to travel. I lived in Egypt for two years, and visited several times after that. I went with my family on a tour of Europe in a van. I visited Israel, Greece, and Cyprus, and I went of a boat cruise down the Amazon River. I have been to Brazil, Uruguay, Paraguay, and Columbia. Even after I got married to my current husband, we continued to travel. We went to Abu Dhabi and Dubai, and our favorite city is Paris. When we reached the age of forty, we had a midlife crisis and sold everything, lived in a van for six months, and toured the United States.
Now that my illness has progressed, I don’t feel as comfortable traveling long distances. I don’t want to be far from a pharmacy that has my records and can fill my medications. I always worry that something will happen to my medication (lost or stolen) when we travel and that I will be without. I have a terrible fear of being without my medication. It is a life line to sanity for me, and I don’t mess around with that fact. I’m not the kind of person who accidently misses a dose, or takes my meds only when I feel the need for it. I take my meds twice a day, with food, exactly how they are prescribed.
I miss traveling though, and my husband misses it even more than I do so, in order to compensate for fewer trips, we have found ways to travel long distances in our own city. One thing we do is buy annual passes to museums. Museums can transport you to Paris, to Cairo, or to ancient Rome. When there is a new exhibit at one of our favorite museums, we make a day of it. We usually walk to the museums because several of them are within a mile of our house, and that reminds us of visiting other cities where we walk most of the day, or use public transportation. After visiting one or two museums, we eat in a restaurant nearby. We try to eat in a restaurant with an outdoor patio (the weather is usually nice where we live), and afterwards we go to a café for a cappuccino, because that is something we always do when we visit Europe.
There is something else we do to transport ourselves to another place. We go to ethnic grocery stores and shops. We are fortunate enough to live in a city with a fairly diverse population. We can find Mexican, Vietnamese, Chinese, and Middle Eastern grocery stores within a ten mile radius of our house. Last week, while waiting for our car to be fixed, we stumbled upon an Asian shopping mall. It was fantastic. There was a huge Korean grocery store with very inexpensive produce, all kinds of candy and chips we had never seen before, and things like dried fish, the largest selection of kimchi we had ever seen, and to us, other exotic and wonderful finds. The mall also had a food court with one of my husband’s favorite meals, Pho, and for me, there was an incredible French bakery with a Vietnamese twist. We knew we would visit again.
Other things that can make you feel like you have traveled to a distant land, is taking an architectural tour of your city. Most cities have at least a few buildings that were designed by innovative architects. In our city, we have a library, a court house, many personal residences, and some churches that are definitely worth seeing. We love to read about the history of a building and then go and visit it.
Of course seeing a play, a poetry reading, a concert, or a movie can transport you for a few hours to another time and another place.
If you don’t have many opportunities in your own town, or city, consider taking a short road trip to a nearby town or city and exploring their local treasures. You don’t have to get on a plane to experience other cultures these days. Often times there are treasures worth exploring in your own back yard. Plan an adventure, and book that trip!