This is a piece from my daily writing practice that I cleaned up a bit and submitted to this magazine.
You can find it here.
This is one of my 15 minute writing practices. Pen never leaving the page, and no editing allowed.
There are no sides to take. There is only us. Each of us. The together of us. The ocean of us. How you can’t sort an individual cup of water from the substance that covers most of the globe. The salt in the water. The whales in the water. The seals, sea lions, manta rays, dolphins. The barnacles on the seashells. The coral reefs. The blue fish, yellow fish, oysters, crabs. The sand dollars. The starfish. All of us. The climate is changing, and together, we can stop using so many plastics: water bottles, shampoo containers, straws, cups, and bags. We can drive less and live in smaller spaces. We can buy fewer new things. We can upcycle, recycle, reuse. We can make the best things second-hand things. We can buy things that last not a few years but one hundred years. Bookcases, desks, beds. There are no sides to take. There is only we. Divided not by skin color or religion or lines drawn on maps. One. All aboard the same train. We are all going in the same direction. I love the saying we are each walking each other home. Each of us holding the hand of the other, therefore ourselves. Gently saying out loud, “It will all be okay.” We will all be okay. We can do this together for each other for ourselves. I have heard that the trees have their own language. They sort of sing as they bend toward the sun. We are like trees, only we live shorter lives, so we aren’t as wise. We haven’t seen as much, and maybe we don’t hear each voice calling out to us to join the parade. To join the circle. To come together and resist the urge to tug at what won’t break. We are all of each other. The same substance, soil, blood, bones, cartridge, and tendon. We are weak and strong. We are brave and fearful. We are at one pole or the other, but we belong like an instrument. One string high-pitched another low. Let’s sing. Let’s dance. Let’s carry each other on our backs or shoulders. Let’s do all the things for one another. Doing them for ourselves.
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Registration is here:
I applied for a blogging job (writing about schizophrenia), and the editor said I wasn’t a good fit. I waited months to hear from the company, and I held on to hope all of that time that I might finally have a part-time job. So, I cried when I received the e-mail rejecting me. I received a gift from my brother and his partner the same day in the mail that said, “We heart you” so, thankfully there was a band-aid for my wound.
Considering I wrote about happiness yesterday and trying to love the negative along with loving the positive, I tried to love the news about the blogging job (it took me a couple of days to get around to even considering loving this news).
For almost twenty years I hid the fact that I have a mental illness. I hid my diagnosis from family (my husband’s) as well as friends. I didn’t tell people about my illness because I was ashamed of it. Then, three years ago, I posted an essay on Facebook and opened up to the whole world. That opening up, revealing my diagnosis, has not been a bad experience. I have met wonderful people, and feel that I have grown into a role as an advocate/voice for people with schizophrenia and other brain illnesses.
Hiding an illness takes a lot of energy and the shame and embarrassment behind the decision to hide it wears on a person, too. Coming out in as bold a fashion as I did (starting a blog, writing dozens of articles and essay and publishing a book) puts the focus squarely on the identity of illness. I was saying loudly, clearly, and to everyone that would listen, that I have schizophrenia.
While I was shouting to the world that I have schizophrenia I was also trying to convince and tell people that I am a wife, sister, daughter, friend, aunt, writer, student, etc. but I don’t think that message was nearly as loud or nearly as obvious.
Well, not getting the job as a blogger who writes exclusively about schizophrenia pushed me a way I have not been pushed before. From now on, I am going to introduce myself to the world as a writer first and somewhere down the line as someone with schizophrenia (if that even comes up). I am no longer going to center my identity around someone who has schizophrenia.
If I had landed the job blogging twice a week about schizophrenia, I would have to be thinking about my illness all the time, researching, writing and constantly trying to find ideas to write about. I am currently taking a class for writing non-fiction (something I regularly do), and I am not writing about schizophrenia. I am writing about my life as a kid, growing up, my family, mistakes I made, etc. In fact, every assignment but one has been about my life before I even knew I had a mental illness.
So, am I happy now? Do I love the negative along with the positive? I don’t know if I love the negative, but if you read this blog, you can see I certainly have reason to be hopeful and even thankful I didn’t get the blogging job.
There might be something to this theory about happiness after all.
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 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.
*I am not referring to the horrible and tragic stories where family members have tried again and again to get a loved one help and have been unsuccessful (those stories need to be told over and over until we can change the system).
It seems remarkable to me that there is still stigma and stereotypes that are so prevalent surrounding mental illness. I feel like everywhere I turn someone is writing a memoir, essay or novel with a mentally ill character. The most common stories involve a child of a mentally ill parent or a parent of a mentally ill child. The stories an adult child of a mentally ill parent can tell are very different than the stories someone can tell about themselves. The same is also true when parents write about their children.
I understand how scary a mentally ill parent’s episode of psychosis can be to a child. I also understand the grief associated with having a child go from one level of functioning to another, but somehow other stories need to be told as well. I’m not saying these stories aren’t important or true, only that they seem to be the most common narrative. Many of them lack originality and don’t further our understanding of the range of what people with a severe mental illness are capable of doing, being, contributing.
I know with mental illness comes pain, sorrow, suffering. I know that those things do not just visit the person with the illness. I know these stories can interest a reader, but I think we need to advocate for and support writers who have a severe mental illness and help them tell their stories whenever we can (if you love someone with schizophrenia or schizoaffective disorder, please encourage them to write). Even with the surge of writers brought on by the Internet and digital culture, I feel like there still aren’t enough people who have a severe mental illness telling their stories, what their lives are like and their successes, dreams, etc.
It’s frustrating that editors seem to either love the “feel good story” or the “sensational story.” When I say a “feel good story,” I mean that I or someone else is an inspiration to others rather than just a common person doing their thing. When I say “sensational,” I mean that the editor wants me to include the details of hallucinations, delusions, etc. even though that isn’t always a huge part of having schizophrenia. It is the worst part, I will admit, but not always the most frequent symptoms especially if the person is on antipsychotics and isn’t medication resistant.
I will do my part to get more stories out there. If you have a unique story, or your loved one has a unique story, I will share resources with you to help get you/them published. We can either communicate via Skype or e-mail. Hit me up; I’ll help if I can. Let’s change this narrative and give a broader perspective of severe mental illness.
I have frequently written about caregivers and their role in helping, assisting, loving, organizing treatment, taking care of finances, etc. for those of us with a disability (whether it is schizophrenia, autism, or any number of other disabilities). Caregivers are essential, and I know they need their space, their groups, and their support, and they have every right to tell their stories.
Here is the thing though, and I say this with caution (as not to offend any caregivers): we have our voice, and many of us would prefer that the public learn about our conditions from our perspective and not always the perspective of the caregiver.
Recently on Facebook, a freelance writer who I am in contact with on social media, accepted a job writing about schizophrenia, from an online site (she doesn’t have schizophrenia). I know at least a dozen writers with schizophrenia who are trying desperately to make a living doing something they can do (because there are many jobs they can’t do) and this freelancer is not only taking a job from “us” but is going to be “our voice” as well.
I am a little tired of the story of parents of a child with schizophrenia turning up in the New York Times, or other prominent newspapers or magazines, (anywhere actually) because inevitably it is a story about how “awful” it is to have a child with schizophrenia. We have all read the story of the sad “before” – great athlete, great student, popular, outgoing, to the “after” – withdrawn, unable to read or attend classes, etc. I for one, am tired of that story – extremely tired. There is another story to be told. There are thousands of other stories to be told.
I think there is a place for caregivers, and their stories, but I think the ones who should be given precedence to tell the story of schizophrenia, or autism, or anxiety, or physical disability, are those who live it. Our stories, our voice.
I don’t want to see another Hollywood script about the creepy killer having schizophrenia. I don’t want to see another newscaster or journalist speculate about the possibility of a mass shooter being mentally ill, and I don’t want to read another story by a parent of someone with a disability about how that disability is lived out.
I want those of us with schizophrenia to define schizophrenia – not Hollywood, not the media, not parents or siblings. There are huge misconceptions about schizophrenia held by the majority of the public; I want to be on the front lines dispelling those misconceptions and myths.
I am thankful for every single person who cares and is an ally to anyone who has a mental or physical disability. It is time, though to allow us to speak for ourselves. And won’t that speaking, that writing, that telling be one of the most powerful tools in getting rid of stigma, ignorance, and all the other negative perceptions? Besides, allowing us to do and get a paycheck for the jobs we are capable of doing, it also lets us define our lives and what they look like – something people have been doing for us (incorrectly) throughout history.
It isn’t always easy to admit, but I am good at some things. One of those things is being honest and not being afraid to fail. When I was unable to be successful at the warehouse job, I wrote about it. I didn’t hide it. I didn’t make excuses. I wasn’t embarrassed.
Today, at the place where my husband volunteers many people asked how it was going with my new job. My husband told them he didn’t think it was going to work out. He wasn’t embarrassed by the truth of what happened, but he wasn’t sure if I would want people to know.
I don’t care if people know that I have limits, that I frequently receive rejections for my writing, and that when it came to this particular job, I couldn’t do it.
I try to do most of the things that other people do, but there are times when I am unable to. Those are the times that I have to admit to myself, “Oh my God, I have schizophrenia.” I know that sounds silly, but it is true. I have symptoms of my illness every day, so it seems obvious that my diagnosis would always be at the forefront of my mind, but it isn’t. When I see a part-time job that sounds interesting, I think, “That would be cool; I’ll apply.” A similar thing happens when I read about an interesting place, I think, “How cool. We could take a trip there.”
I feel like it is both positive and negative that I think this way. On the one hand, I don’t see any obstacles to my life, and at the same time, it sets me up for failure, disappointment, and some major episodes (if my husband isn’t successful in talking me out of whatever it is I am trying to do).
Is it better to see ourselves as completely and promisingly capable or to see ourselves as limited and frail? I think it is better to see myself and my abilities as one big possibility and deal with the failures as they come. I don’t want to feel beaten by this life or this disease. Am I unrealistic? Am I over-reaching? Yes, to both of those things. But as someone who usually thinks the worst thing is going to happen in any given situation, this belief that I am not bound by my illness is almost a relief. It is the one area where I happen to be an optimist, and I’m not going to criticize myself for that.
Somewhere deep inside I must know that when I stop being excited about possibilities when I stop trying, or constantly say to myself, “I can’t do that.” Then schizophrenia has taken over my life and defeated me in a way that will have an impact on my joy, enthusiasm, and creativity.
So, I’m good at failing and not at all ashamed of sharing my failures with others. It isn’t an award-winning characteristic, but it’s something rather unique in our social media (perfection driven) society. I am real and honest, and those qualities are rare today. I’m going to take pride in that – no failure there. Nope. No failure at all.