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.
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I am working on an essay about stigma, and I hope to place it in an online magazine. Working on the essay, got me thinking about the word, stigma and how we use it. Stigma is a word I see used over and over again. I mostly see it in the addiction and mental illness circles. It is a word that gets thrown around a lot and not always in the correct way. So, what does stigma mean?
The definition given when you type “stigma definition” into Google, is “a mark of disgrace associated with a particular circumstance, quality, or person.” It helps to read the synonyms which are: shame, disgrace, and dishonor, among other less common words.
So, most of us would agree there is a stigma around having a mental illness. What does that mean? Those of us with a mental illness have the “mark of disgrace.” It doesn’t mean that when you do something annoying and people call you out on it, that they are stigmatizing you. It also doesn’t mean that when people don’t like you (based on your behavior) that they are stigmatizing you. But if they are doing these things because of your mental illness, and because they believe you are a disgrace due to your mental illness, then yes, that is stigmatizing you.
I know it seems simple to talk about this, but I see people use their mental illness as an excuse and defense in almost every circumstance. It is one of my goals to point out what is and what isn’t a mental illness. I wrote the other day about the issue of flawed character vs. mental illness. Many of us with a mental illness are kind, compassionate, giving, loving, creative, honest, loyal, etc. In other words, we have a strong character. There are many people without a mental illness that are selfish, mean, dishonest, rude, and hurtful. (In my post I used the example of the people who didn’t bring Christmas gifts, but took a gift from the gift exchange even though it meant others who had followed the rules would go without a Christmas gift). I wouldn’t leave someone without a gift, and I have schizophrenia. I know right from wrong except when I am psychotic which is a whole different world and category.
So, I bring up the word stigma because I see people claim that others are stigmatizing them when it doesn’t appear to be the case. Don’t get me wrong, stigma is real and grows thick especially when you have “the most dreaded of all the mental illnesses.” (I have seen that quote written just that way by three successful authors now. And it doesn’t slip past me, that the quote contains its kind of stigma.) Those of us with schizophrenia are put at the bottom of the rung – having the illness that is the “most dreaded.” What do you think it is like to have schizophrenia and read that quote over and over again by highly educated people? I will tell you what it is like, but that is in my essay. I will post a link to it if I get it published.
Stay tuned, for more on stigma.
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.
The last two nights while we were eating dinner, my husband and I did some “couple’s exercises” just for fun. One of the things we were asked to do was tell each other our whole life story in four minutes. My husband started. He said he came from a traditional Catholic home in Lebanon. He talked about the stability of his life up until the war broke out when he was ten. He went on to talk about boarding schools and the American high school he went to in Cairo. He spoke about college in the United States and moving to Southern California. He went on to meeting me, getting married and ended with the present day.
When it was my turn, I talked about one of the things I love most about my life and that is spending the first eleven years in a small town in a blue collar environment and then when my mother remarried starting to travel and see the world. Having both of these vastly different experiences has made it possible for me to relate to the working class and also the more privileged. Spending time living in Egypt helped me to understand different parts of the world and to look at American culture from the outside. I also talked about my first marriage and divorce, and then meeting the love of my life my husband/partner and up to the current day.
As soon as I was finished telling my condensed version of my life story, it occurred to me that I never mentioned schizophrenia. I said to my husband, “I never once mentioned my illness. It never came up in my story.” Surprised, he said, “I didn’t mention it either.”
Even though we live each day around schizophrenia; we schedule our meals around medications, try to limit my stress, make sure I get enough sleep, deal with my symptoms when they are present and one hundred other life-disrupting things, none of that seems to matter in our bigger life story.
I find the fact that neither one of us thought to bring up schizophrenia in our brief telling of our history as an encouraging and hopeful truth. My illness isn’t what is important or significant or memorable about our lives. Even though we manage it in as responsible of a way as possible, it doesn’t run or rule our lives the way I thought it did. It is an afterthought to the things we find important.
I think my husband and I have truly found a balance with living with a severe mental illness. On the one hand, we do everything possible to limit the negative impact of that illness on our lives which means sticking to routines and making many choices about travel, events, etc. On the other hand, none of those choices and sacrifices is what we focus on when we are considering our whole life; the precautions we take and hours we spend trying to get me through a tough patch of symptoms doesn’t even warrant a mention in the telling of the story of our life.
I have always said that my life is more than schizophrenia and I have proved to myself that I believe that and behave in a way that makes that statement true. Those of us with a severe mental illness must create a life that reaches beyond our diagnosis – we need to stretch up and out and cultivate experiences that have nothing to do with our illnesses. Let’s do what exceptional people all over the world do, let’s reach for the stars and even if we never touch them think of all the benefits we will gain from trying. Tonight’s sky will be full of stars, let’s all look up at them when it turns dark and dream our most creative dreams and then let’s take the first step to making those dreams happen. If we do this, we will be one step closer to touching a star and that step can be the one that puts us within reach.
A few months ago I wrote a piece for a non-profit organization about living with schizophrenia. In the piece, I said that I thought writing was an important therapeutic tool: writing can help you document your symptoms so you can easily share them with your doctor. Writing can also help you work through difficult times, difficult memories, and help you gain valuable insight into yourself and your diagnosis.
After writing about the benefits of a writing practice, I wrote that eventually, I think that to be healthy people need to stop writing solely about their illness. The editors asked me to take that part of the essay out, stating that their readers almost all use writing to document their illnesses, and they might take offense to my suggestion that one can and should move beyond that.
I’m not talking about never writing about schizophrenia again. I plan to write about it as ideas come to me, but I feel like writing other stories, stories about my grandmother, my siblings, my childhood, things that are happening in the world, all of these things can be a necessary progression to living a happier and more fulfilling life.
I think a lot about my writing and I am sure other people who write think a lot about their writing, too. If my thoughts are almost always swirling around about the symptoms of my illness, it is my belief that more and more of my life will be that illness. If on the other hand, I create a love story, write down memories from childhood, or of my grandparents, then I believe my life will become richer and fuller as those thoughts take over part of my day and part of my life.
As advocates for people with a mental illness we are often trying to show people that we are more than our illness; I know I say it, and write it all the time. I think we need to live that in our creative lives as well and I think our mental health will increase because of it.
I like to read about people’s experiences involving their mental illnesses, but I also like to read about the type of flowers they like, their dream car, and whatever other things they care for or love. I even like to read fictional stories that they created out of their imaginations. This type of writing does a tremendous amount to normalize those of us living with a psychiatric diagnosis, and it also means we are thinking outside of our illness, and I think that is a sign of health and can lead to an experience of more happiness.
Happiness is not rare, but it isn’t always easy.
For hours I read the descriptions for writing classes. I look at UCLA Extension classes. I look at Gotham Writing Workshop. I look at the offerings of the non-profit writing organization in my city. I spend hours searching for online writing classes and writing groups in my area. I attend as many writing workshops as I can afford. I am searching. I am looking for discipline. I am looking for a magic pill or bullet that will keep me in my chair every day writing essays, prose poems, blog posts, articles. There must be a trick to being productive. It doesn’t help that on Facebook I am friends with a wide network of writers. Those writers report their daily word count: 2500, 3000, sometimes more. I feel inadequate. I feel like a failure. I hire a writing coach.
I have to accept that I am looking for shortcuts. I am looking for a guru with the answers to being a writer, but no such guru exists. The only true guru would tell me this one word, “write.” That’s it. I realize today as I am typing this that my problem is not that I need one more class, another critique, the input of one more teacher, assignments, encouragement, one more syllabus, or to participate in another workshop.
I need to sit down and do the work. I need to open a document and begin to type. I have been looking for something magical or mystical, some easy way out. There is no easy way out. It is just me, my thoughts, my hopes, my dreams, my words on a page that I either send into the world, or I don’t.
The time of reckoning is here: I either want to be a writer or I don’t. I either take this lonely step, or I give it up altogether. I think of all the money I have spent on advice. I think of all the time I have spent in classes. I think of how I was searching for someone to do the work for me. It doesn’t work that way. I need the determination. I need the motivation. I need to sit down and get down to business, the business of putting words on a page.
I have always believed that everyone has a book inside of them. I frequently meet people who tell me they are going to write theirs. I wish them well, I do, but this business of putting ideas on the page every day is not for everyone. It is both a pleasure and hard work. The words don’t always flow. The ideas don’t always make sense when you try to type them out. Not every piece is artistic or amazing.
I lost the ability to write for many years because I couldn’t focus while on my medication. I never want to lose that ability again. I don’t take this gift of time and the gift of desire for granted, but I have been looking for shortcuts and the path that has already been cleared for a few years now. It’s time to take out my machete, and start hacking away at the obstacles. No one can do it for me. I’m out in the jungle and the options are, move forward or stand still and perish without water.
I sat in my chair today, and I wrote. I wrote these words. I cleared the path a little bit. I took a step forward. Tomorrow, I hope I can make a little more progress, and after that, a few steps into the jungle each day.
It is work this writing, and although it is the best life I can imagine, I need to stop searching. If you want to write a book or make a living as a writer, you can pack your bags and begin to search for the best way to do that. But when you return home, you will find your computer waiting, and if you are lucky, there will be a sticky note on it that says that one word, “write.” And you will discover that you already had everything you needed before you left on your journey. That’s it. That’s all there is to it, “write.”
It’s so much harder than it sounds, you’ll break a sweat again and again, but that’s the secret, and it’s up to you to somehow find a way to turn it into magic one word at a time.
I hope you will read my latest essay on Drunken Boat. It is about “Outsider Art.” I think those of you who have any connection to mental illness will find the essay interesting. If you do read it, please let me know what you think of my opinion of “Outsider Art.”
If you have been following me for a while you will know that I have been trying to break out of mental health writing. Don’t get me wrong, I love mental health writing and all the positive things it can do by educating, raising awareness and saving lives. I love that stuff, but I have always wanted to be a writer. Just that, a writer. Not a woman with schizophrenia that writes. Please read my latest essay on Angels Flight literary west. It is about death, David Bowie, and how we mourn our losses. The title is The Extraordinary Ordinary Death. I hope you will read it and share it. It looks like I have made it to the title of, writer. I also have schizophrenia and will always write about that, but today, I am celebrating being an artist among other artists – disability or not.