I received my author copies, and I want to pass a couple of them on to you! Like this post and comment for a random chance at winning one of two copies. I will pay for shipping.
I received my author copies, and I want to pass a couple of them on to you! Like this post and comment for a random chance at winning one of two copies. I will pay for shipping.
I need to work on my expectations and taking things personally. I know from years of being on this planet, and hearing the words of some wise people, that making things personal is most often just punishment to yourself. Most things that happen are not personal.
I am in a writing class and on the first meeting when the teacher asked me a question, I told her I have schizophrenia. The whole class heard, and now every time someone doesn’t respond to my homework, or my comments, I think it is because they think I don’t matter because I am just the woman with schizophrenia. Thinking that people’s response, or lack of response, has anything to do with me is self-defeating and ridiculous.
People don’t respond to us because they are busy; they prefer texting, they are shy, don’t want to, don’t need to, are rude, are sick, etc. I could go on with that list for ten more pages, and every excuse for people not responding would be more likely the real reason than it having anything to do with me or my having schizophrenia.
I need to take the advice of some strong women and toughen up buttercup! It is hard to put yourself out there, though and not to receive positive feedback in return – no smiles, no kind words, no words of support – just silence, nothing, nada. It is particularly hard considering the stories/essays/pieces I wrote were deeply personal. I have to remember though, that it is my expectation that people will respond, it isn’t a requirement of them. I need to keep my expectations in check.
I know for some people, especially those of us who have trouble with isolating socially, it would be easier not to take any risks (this is true of everyone not just people with a mental illness). Not taking risks, means you have nothing to lose. But that brings the flip side of that scenario into focus – if you have nothing to lose, you have nothing to gain.
I think it is so important for people (everyone) to push past their comfort zones at least a little bit on a daily or weekly basis. Those of us who are on the road to recovery need to try to push our boundaries, or our boundaries will keep getting smaller and smaller and threatening to choke the life out of us. Most of us need to grow a little more comfortable trying new things and the more things we get comfortable with, the bigger our world gets and that helps with healing.
I know I can’t completely regain all the functioning I had five years ago (an office job, lots of travel, very social, etc.). But I can work to regain some things and maybe even add some that I didn’t have before. To do that, though I will need to keep taking risks, lower my expectations and not take things personally! It can be done; I know it can. The only thing holding me back is fear and myself. Everyone with schizophrenia has dealt with fear; we are experts at it – this should be one we can easily conquer.
In March, I celebrated this blog’s third anniversary. In the three years that I have been writing about life with schizophrenia, I think I have tried to keep one message in the forefront, and that is, people with schizophrenia can look, act, care about, and live a life similar to everyone else.
Of course, I have also made sure to point out that everyone with schizophrenia is different. Just like everyone without schizophrenia is unique, so are we, and so is the way the illness manifests in each of us. Those of us who have schizophrenia may share similar symptoms, but how we experience those symptoms and the level to which they impact us varies tremendously.
I hope from reading my blog that people have more of a sense of compassion and understanding for those of us living with this brain disease. The biggest issue in helping is first to be able to relate to us as human beings. We were all born the same way everyone else was born. We all have or had a mother and a father.
Many of us have people who love and care about us, and that would be true if we were in the hospital, in prison or living on the streets. Just because someone has lost touch with reality and appeared to be a loner, doesn’t mean they don’t have family or someone looking for them, or that cares about their well being.
Schizophrenia is not yet curable, but for many people, it doesn’t have to be a life sentence. It is a chronic illness like other chronic illnesses, and it is possible for some people to manage it as such. (There are, of course, people who are medication resistant, or who doctors haven’t found the best or workable combination of medications to help them reach their full potential). And there are others who manage without medication at all (an impossible scenario for someone like me).
In my three years blogging, I have tried to write against stigma. I have tried to write against stereotypes. I have tried to put the most human face on schizophrenia that I possibly can. I have shared some of my childhood here. I have shared some of my heartaches here. I have shared some of my joys, my strengths, and my weaknesses.
I have tried to make myself as three dimensional, and as like everyone else as possible, because I believe before there will be a better treatment environment for the mentally ill, everyone has to see something in those struggling that reminds them of themselves.
This blog is dedicated to those people who can’t show you what they love, what makes them happy, what they hope for and dream about, I can only hope I have been a voice for those people. I want all of our lives to be better, and I hope I have created a bit of that here.
When I went to bed last night, I had no intention of waking up at 4 AM to watch the Royal Wedding. It just so happened, though, that I woke up at 4:30 this morning, so after I made coffee, and poured a glass of water, I sat on the couch and turned on the television. When I turned on the tv, Meghan and Harry were preparing to exchange vows. I spent the next forty to sixty minutes weeping. The tears were flowing so steadily out of my eyes that my hair and face were all wet. I can’t believe that this modern day fairy tale impacted me in such an emotional way.
When I was a little girl, I can’t remember ever wanting to be something when I grew up. In fact, I can’t remember ever answering that question that so many adults ask little kids as they grow. There were very few Disney Princesses in the early 70’s (Cinderella and Sleeping Beauty are the only two I can think of), and my first trip to Disneyland as a twelve-year-old was a disaster (for the record, I hated it). Because of these things, I don’t think I wished I was a princess growing up. So, that isn’t why the Royal Wedding made me so emotional.
Late this afternoon, I told my husband how I had wept through the ceremony, and I asked him why he thought I had that response. My husband thought it was because the news has been so bad, for so long, and there is so much negativity that the wedding was a chance to experience a love story, something beautiful, and all the hatred and racism we have been experiencing didn’t exist, at least for a moment.
I think my husband is right. The nightly news and bombardment of news on social media are impacting my mental health. Rarely do I see a story that is hopeful, uplifting, a connection between people and our shared humanity. I know that I can’t turn my back on current events entirely, because to do so is to be part of the problem. I am going to commit some of my days to reading stories or essays written by writers that deal with something besides Russia, war, guns, lies, investigations, impeachment, corruption, racism, bigotry, misogyny, etc. I can’t keep up this soul-crushing pace of bad news and negativity and keep a firm grasp on good mental health.
I hope that if you spend a good chunk of time on social media or watching the news that you will join me in adding some soul-enriching writing or entertainment to your day or week. I know taking a walk to the park helps clear my head a lot, but there is no substitute for reading an uplifting story of human compassion, love, selflessness, or heroism. I am going to be returning to my bookshelves with a renewed interest, and after that, I might take a trip to our city’s beautiful library. Hey, that’s a good idea for an outing. I’ll meet you in the biography aisle.
Along with many other people, I am a person who is always trying to make myself better. I don’t want to stagnate in my relationships, my learning, my life. I would consider myself a life-long learner, a phrase I first heard my uncle use approximately three decades ago.
Since I graduated from college, I have almost always been in one kind of class or training program. I graduated from college with a BA in Liberal Arts in 1989 and since that time I have taken diversity training, non-profit organization training, numerous writing classes, a year-long leadership training program, a culinary arts program, etc.
Occasionally throughout the years, there has been a teacher, a statement, an exercise that has changed the course of my life. I can name these people, quotes, and experiences on two hands. Last night I had one of those experiences in a class I am taking online from Lidia Yuknavitch.
When I received my first diagnosis of bipolar disorder in my twenties, I spent a lot of time romanticizing the illness. I thought maybe having bipolar disorder made me more creative or more intelligent, or unique in other ways. I spent many days reading about famous people with the disorder.
At nearly forty, when I received a diagnosis of schizophrenia, I didn’t romanticize the illness at all. Schizophrenia, unlike bipolar disorder, is rarely romanticized in writing, or in the media. I adapted an attitude that many people have about mental illness in general which is that people who are creative would be creative with or without the illness and it is possible that if they weren’t sick, they would be far more productive. I adapted this attitude because it was far better than the messages society gave about schizophrenia.
I internalized some of those societal messages, too. In other words, I could find a silver lining in being someone with bipolar disorder, but I only saw hardship and struggle in the diagnosis of schizophrenia.
Last night, for the first time since my diagnosis over a decade ago, this attitude shifted a little bit. Some of my internalized stigmas shook loose, and I looked at schizophrenia a bit differently than I ever have in the past.
Just to let you know, Lidia Yuknavitch is a bestselling author. She is magnetic in her beliefs and has an amazing spirit of creativity, and wildness. She is generous and kind, and she wrote the book, “The Misfit’s Manifesto.” (I recommend that anyone with a mental illness read this book to find acceptance and a way forward despite what society tells you.)
So, what did Lidia say to me last night that shifted my perspective? I can’t quote her exactly, but she said that I have characters, voices, and things to write because of schizophrenia that no one else can write and that there is deep creativity in that.
I don’t like that I once romanticized bipolar disorder. And I don’t want to romanticize any mental illness, but when you live with a diagnosis that so many people consider the “worst” thing that can happen to you and someone you respect says that that illness gave you a gift in a way you care deeply about, you take it.
You take it, you look at it, you circle it, you inspect it, and you write as you have never written before because gosh darn no one has ever said anything positive about schizophrenia, and you heard it. You heard it from her.
I found something that is life-changing for me. What is it? Routine. I imagine the concept of a routine sounds simplistic to some of you, and obvious to others, but I never knew what kind of difference it could make to my mental health.
I am not talking about a routine that is designed from the time I wake up to the time I go to bed, my routine is way more flexible than that, but it does pop up in and out of my day.
In the morning, if I am the last one to get out of bed, I make the bed. I know that sounds simple, but it helps me feel like I have tidied up a little bit and accomplished something before I even leave the bedroom. I also take care of my teeth not long after waking up, then make coffee, eat a banana and take my medications.
While I am having my first cup of coffee, I work through my day planner (set up to help with productivity). And I work one exercise in a book of lists that I write that are supposed to increase happiness. I also work in another book that is supposed to increase creativity, and then I write a paragraph or two from a writing prompt out of a huge writing prompt book I have. All of these exercises, take about a half of an hour, and that completes my morning routine.
Later in the day, I try to take two 15 minute walks in between writing, watching the news, reading or whatever else I am doing.
I have dinner around six o’clock every night and take my second dose of medication.
Before bed, I fill up my water jugs for the next day and put them in the refrigerator so they will be cold. I also clean out the coffee pot and floss and brush my teeth.
There is a lot of room during the day to do whatever else I want, need, or feel like doing, or handling a nap or panic attack or any symptoms that come up.
I have found since I have started this routine that I am far more productive (writing at least one essay, homework assignment, or blog post a day). I also get out and take walks more frequently (from 2-4 times a day), and I work on two projects (books) that I am working on with my writing buddy.
I just can’t stress how much happier I am now that I stick to a routine and I get so much more done during the day. Not every day runs perfectly because of symptoms of schizophrenia or one of my other health issues (back and stomach), but about 90% of the time I feel good about my day, my progress, and how I spent my time.
I never knew how much better I would feel with a little bit of work and structure. I’m all for the familiarity and boundaries of a routine!
Undeniably, there are times when I need special accommodations for my illness. There are times when I need people to be aware of the fact that I have schizophrenia and either help me out or give me the space to try and help myself. But there are those glorious times when I am not fragile, I am fierce and tough, and intelligent, and funny and I don’t need any special attention or care.
It is the space where I don’t need anything more than to be treated like any other human being that I live for and love. It is those people who treat me as if I belong, as if I’m not different, as if I won’t break or fall apart, or as if I am not fragile or needy or imperfect who makes me feel the healthiest, the happiest, the most energized, strong and capable. They help me in my healing and help me to become more and more of myself.
I have several people in my life who treat me this way both friends and family. I had an experience with a relatively new friend though, that was the epitome of empowering and normalizing and badassery.
I have a writing buddy who I have been talking to on Skype every Wednesday for months. We talk about our writing, share resources, occasionally read each other’s work, take classes together, and basically bolster each other up and along with our writing goals. She wanted to come out to California and see me. My husband was going to Miami to see his mother for a week, and he never leaves me alone.
My writing buddy, knowing about the fact that I have schizophrenia and that my husband doesn’t want to leave me alone for a week, offered to come and stay with me. She has never been to my house. We have never met in person. She planned on staying ten (which could have been long) days. And, the biggest part of this is my having schizophrenia didn’t scare her. Her coming across the country to stay with an almost stranger who she knows has schizophrenia is gutsy, brave, and speaks volumes about her as a person.
She obviously houses no stereotypes about my illness. She obviously expected things to go and be okay. She was not afraid; she was not reluctant. She just did it, and it was productive and fun. We were creative, talkative, ate good food, walked in the park, saw museums, and shared writing, writing, writing. We developed a morning routine together and worked well while we were both in the same room. We were two women together who love our art and are friends. We shared our passion, and we established our relationship.
I got to put my identities writer and friend before my identity as someone with schizophrenia. I got to be normal for ten days. I got to be a creative woman who loves words and can be a good friend.
I got to show someone my neighborhood, my home, myself and it went well, and I was well. And that is so much, so very much, it is a piece and a part of everything.
My writing partner, Joyce, is here from Virginia. We are creating a week-long writing retreat at my house. Last night, my husband, who loves to show people around our city, wanted to take Joyce out to Old Town. Old Town is the area where the Spanish first settled here. It is considered the “birthplace” of California. In Old Town there are dozens of Mexican restaurants, so we planned to go to one of the largest.
Joyce had never heard of or tried, potato tacos, and I happen to love potato tacos, so I told her all the wonders of them while we were driving in the car to the restaurant. When we arrived the line for seating was long, but we talked with each other and other people waiting in line, so the time went quickly.
Once we were seated and looked at the menu, Joyce decided to order the three taco plate, and she asked me if I wanted one of the potato tacos. I was going to order a side of refried beans and a taco, so Joyce’s suggestion was perfect.
The service was rather slow because the restaurant was packed (Spring break in Southern California), but when our food arrived Joyce offered me a taco off of her plate. There were tomatoes, and many other things mixed in with the potato that I can’t eat due to my diverticulitis. At first I tried scrapping the toppings off and away from the potatoes but there were too mixed up, so finally, I apologized and said, “I’ll have my beans. I’m sorry. I can’t eat that.”
In the past year, with health issues (diverticulitis and my back) I have had to say no, or no thank you, or sorry, I’ll have to pass, on more occasions than I can count. At first, I felt a lot of disappointment at not being able to indulge in things that I normally enjoy or consider my favorites. Now, I am so used to having to say no, that the disappointment doesn’t hit me very hard. Trust me, I wanted that potato taco, but for health reasons, it was a better choice not to take a risk and eat it.
I am learning through some of life’s challenges to be happy with what I can eat, enjoy, experience and not dwell on the things I miss out on. Not being able to eat popcorn (one of my favorite comfort foods), or tomatoes, or strawberries, or a whole list of other foods is not the worst thing that has happened to me. Me having to say no every day to things I want and enjoy has become like a meditation in gratitude.
I might not be able to have everything I want, but I am thankful for the things I can have, and I am starting to believe I take greater pleasure in the simplest things. Not being able to have everything I want is not a bad thing, it can build character and appreciation. I believe in self-care, but always saying yes to ourselves can lead to money problems, health problems, and other negative things. I’m getting good at looking for the positive in adversity and challenges, and I think it is serving me well. I’m happy, grateful and as healthy as can be expected and that is more important than handful after handful of buttery popcorn, or that scrumptious potato taco.
I type out the last sentence, sit back, take a sip of my coffee and read the whole essay through one more time. “I think this is good,” I tell myself. I make sure to save it one more time. It is under the file on my computer that no one else sees, the one named after the James Bond film, “For Your Eyes Only.” I sing a few words from the theme song out loud and try not to think how my work, probably my best work, is in that file that only I will see.
I once tried to post one of the files from “For Your Eyes Only” on my blog, but I couldn’t stop the racing thoughts. The article was about a company that makes video games. I thought one of their games was demeaning to people with schizophrenia. I wanted to have my voice heard. I wanted to publish my views on the game so others could read it and decide for themselves. I wanted to express another side of their story. The article was up for approximately one hour before the thoughts about internet trolls and how they make death threats and harass writers they don’t agree with defeated my publishing attempt.
This past year is different from every year prior. I watch the news every day. I feel strongly about and am outraged by many things. There are essays and articles that I don’t see written about the hypocrisy of so many politicians. I am a Christian and the things some of the most vocal Christian are saying about politicians being “ordained by God,” make me feel like Christianity has fractured more than just Methodist and Lutheran – there are fundamental beliefs that some people hold that are in direct opposition to the ones other’s hold. At this point, it is clearly a separate religion. I have an essay about it, but I fear to take a stand against the Christian Right.
So many people romanticize being an artist and having a severe mental illness. I once did the same thing. I thought reading the poems of Anne Sexton, and Sylvia Plath made me dark and edgy. I thought artists needed to be dark and edgy, especially poets which is what my younger twenty-something-self desired to be. I used to tell people that I thought I could drive myself over the edge, make myself crazy – like really crazy, like “Girl Interrupted,” crazy. That was all before I had my first psychotic episode. That was all before there was no more “acting” edgy, or “acting” dark. My mind was dark, and I wouldn’t call hallucinations, delusions, or suicidal tendencies “edgy.”
My first diagnosis was bipolar disorder. I still held on to some of the romance of mental illness – brilliance. I looked up every famous person with bipolar disorder. I read books about them. So much talent, so much intelligence. I might not be able to play at being edgy anymore, but I could show signs of intense creativity and intelligence. I wanted so hard to believe like so many people do, that mental illness is somehow a gift. Gift of the gods they say. I gave up all notion of romance when I ended up in a hospital room with doctor and nurses using paddles to start my heart. This illness, this disease of the mind, was trying its hardest to kill me and as far as I can tell there is no great evidence of creativity or genius after death.
I started taking my medication regularly, even though on the medication I no longer felt like writing poetry, or writing anything for that matter. I put the romance behind me to stay alive, and that included my desire to be a poet and identify with the ill geniuses, creative and otherwise. I married my boyfriend and lived a pretty quiet life for some years. My psychiatrist at the time said I was “too well” to be mentally ill and said that my previous psychotic episodes were caused by trauma. He took me off all medication. Within one year, I was having conversations with God, Jesus, and the Holy Spirit. I believed the second coming was just days away and I spent six months believing I was a healer. I made cakes. I made more cakes. I made three cakes a day. I gave them to the mailman. I gave them to everyone living in our apartment building. I believed my cakes could cure anything from cancer to MS. I wanted everyone well. The hall of our building smelled like a bakery for months. I ended up in the E.R. with suicidal thoughts, and that led to a diagnosis of paranoid schizophrenia.
It took almost twenty years to discover the root of my problem, but here we were, my husband and I, with a diagnosis that seemed bigger and scarier than either of us knew how to handle. The two words paranoid and schizophrenia even sound scary. Having them placed on me as an identifier as in, “I am someone with paranoid schizophrenia,” was almost more than I could take. But as with any illness, you keep moving forward – a step here, a movement there, a jump, and then without realizing it you have been living with that illness for a month, six months, a year, ten years, and you go on.
Even though I had received my bachelor of arts long ago, I was never one to give up learning. I enrolled in several poetry classes at UCLA’s Online Extension and Gotham Writer’s Workshop, and I even joined a local poetry group. I was rusty, but I wasn’t dead. I started publishing again and getting support and feedback from poets I trusted and respected. I applied and was accepted to an MFA program.
Once in the MFA program, I was required to take classes beyond poetry. Having never thought of an idea for a novel in my life, I avoided the fiction classes and took a non-fiction class. I fell in love with the longer form. I fell in love with writing essays instead poems. I asked to change majors but found out I would have to start the program over. I wasn’t willing to do that. I kept taking writing classes online, but this time they were non-fiction classes instead of poetry classes. I started to publish some of those pieces. And the more I learned, the more I wanted to write about what I saw, how I felt, and responses to popular culture and the world around me. I thought my biggest obstacle would be going public with my new diagnosis, but that wasn’t it. My biggest obstacle was a symptom of the illness I had thus far been hiding.
I went public with my diagnosis in an essay posted to Facebook by a mentor and friend. The post was how all of my friends and my husband’s family found out about me having paranoid schizophrenia. My husband and I planned for a year before we agreed to the announcement date. We thought people would disappear. We thought people would be angry, confused, and we braced ourselves for people making an exodus from our lives. Well, people were far more graceful than we could have imagined and if those two words that make up my diagnosis scared anyone away, we haven’t missed them, but what all this writing and exposing of myself did was make me hyper-aware of my symptoms.
Paranoia means I can’t publish essays that devel into my feelings about this president or any other. I am terrified of openly criticizing corporations; I fear their reach and power is so much bigger than a person like me. I’m not currently suffering from delusions like that the government is wire taping me (I have believed this and feared it in the past), or that I am in contact with aliens or hearing the voice of God. I do not hear voices at all. But I do live in a fragile state where I am afraid of what people will do to me if I oppose them, challenge them, or offend them.
Living with paranoia is my biggest challenge as a writer/artist. Not being able to fully express myself because I fear being targeted by internet trolls, the government or large corporations can keep me silent, and it can kill creativity. I might not be able to speak up, but I’m grateful my creativity isn’t dead. The proof of it is for my eyes only in a folder that sits on my hard drive where only me and James Bond, or someone posing as him, can gain access.