Due to symptoms of paranoia the author of this post had to remove it. This is the third time I have had to take something off the Internet because of my symptoms.
The fact that this post is now gone, is a good reminder to everyone reading this that schizophrenia can be a difficult disease to live with.
I’m sorry you came to this post to read about stigma, and you found this message instead, but I think this message is educational – sometimes symptoms can change our lives and our behavior.
Thank you for reading.
People who suffer from a mental illness know disappointment and discouragement first hand: medications that don’t work, another psychotic episode, failure at things that seem easy for others. Those who are suicidal can’t find hope in the future, or possibly have had their dreams crushed. Those of us who have a mental illness don’t share all experiences, but we do share those heart crushing ones.
When I was young, my family was poor. I didn’t know we were poor, and I never felt like I went without anything. It was the late sixties and early seventies and the income gap wasn’t as wide as it is today, and maybe that is part of it. Advertising for all the latest toys went along with Saturday morning cartoons, but even though I wanted everything I saw on television, I don’t think I expected to receive everything. Maybe, one of the major differences between when I grew up and today is that we played outside more. Our bikes were important, forts were important, climbing trees was important. Computers and IPhones weren’t even a dream in any of the minds of kids of my generation. Toys were secondary compared to all the adventures we had.
I don’t know if it was the fact that we were poor, or the fact that my parents didn’t complete college, or the fact that I was a girl at a time when girls were still required to take home economics, or the fact that there were traumatic elements to my childhood (like alcohol and domestic violence), but I never had a dream about what I wanted to be when I grew up. I have no idea how I answered the question, “Becky, what do you want to be when you grow up?” that well-meaning adults certainly asked of me.
I never had a dream. I never planned for my future. I never had hopes of one day achieving anything, until I was in my late twenties, and a writer/therapist heard a few poems that I had written. Then I had a burning passion to write. I wrote poetry all the time. I organized and ran a reading out of an old theater turned coffee shop. I started my own literary magazine (when computers were starting to become common in homes), and I published in several journals. That dream, the only one I have had in my life, came to a halt when I was diagnosed bipolar after my first psychotic episode. I simply couldn’t read or write on the medication. It was impossible.
It has been nearly a quarter of a century since I was first diagnosed with a mental illness.
I am writing again.
Yesterday, I posted three places that published my essays. Last week, I had two publications ask me to write an article/essay for them. I spend a good deal of my time with tears in my eyes.
As a young woman I had a dream, one dream. I dared to dream one single dream, and I had that ripped from my life in what felt like an instant. I never stopped mourning the loss, the hope, the passion.
I am reluctant to grab ahold with everything I have to my writing. I am afraid it will be taken again, or that the interest in publishing my work won’t last. Although I am reluctant to give everything over to my writing, to really let loose and turn everything over to a dream, my successes are pulling at me.
I sit most days at my computer and have a good cry; the thing I mourned for nearly half of my life is at the center again.
I am almost ready to write the truth of it out here and now. Those words, the painful, joyous, life-giving, life-altering words: I have a dream. I have a dream to write.
So, for those of you who wonder about the heart and mind of someone who has paranoid schizophrenia, locked inside that complicated brain that behaves in an unusual manner, tucked deep inside the cavity of the chest, there may just be a treasure that is kept secret from the world, a hope, a dream, an unfilled passion.
Every day, here, I am excavating that treasure. I am sifting dirt and sand. I am searching for the gems and trying hard to polish them up for the world to see.
I have tears in my eyes. I have buried treasure. I have a dream. I have hope. I have paranoid schizophrenia, but that is not going to stop me again.
Yesterday afternoon my husband and I were sitting around the house when I said, “Let’s go up to Starbucks to get out of the house.”
We walked up to Starbucks and while I ordered us an Arnold Palmer (black tea and lemonade) my husband found us a table. I saw that he had chosen one of the few empty tables next to a homeless man. I waited for our drink and then joined him.
I took out an essay I was trying to revise and said, “This is hard for me to rework. I understood immediately what the editor wants, but actually editing this and making it better is tough.”
The homeless man sitting in the corner said, “Are you a writer?”
“Yes.” I answered him.
“How many books do you have?”
“I have one book that I wrote by myself, and my husband and I published an anthology of fifteen poets. So, I guess I kind of have two books.”
“I am a writer too.” He said.
“What do you write?” He asked me.
I had often told people I write poetry and essays but I had never told them what the poetry and essays were about. I made a guess about this man sitting near us, and decided to answer him honestly.
“I used to write poetry, but now I write essays about living with paranoid schizophrenia.”
“I was diagnosed with that too.” He said.
“What do you write?” I asked.
“My next book is going to be about the power of hello.”
My husband and I agreed that the power of hello was an excellent topic for a book. He told us his name, Brian. He recited a poem he wrote in high school that he said was published. We talked about Frank Lloyd Wright, Hillary Clinton, Monty Python Movies, a British television show, and how he was going back to Michigan at the end of the month.
“How will you get to Michigan?” I asked.
“The city has this program. If you do some community service they will buy you a bus ticket to wherever you want to go.”
“Is someone in Michigan waiting for you?” I asked.
“My father, he is eighty-five.”
Brian said he had some really expensive Coach glasses. He took them out of a bag and showed them to us. They were pink and maroon. My husband and I told him they were nice. Brain said he thought they were worth a lot of money. Then he handed them to me and said, “Here, I want you to have these.”
I tried to refuse the glasses. I told him I didn’t have any money to give him for them. He said, “A gift is a gift. I don’t need any money.”
A gift is not just a gift when it is one of the few things you have.
I hope Brian writes that book about the power of hello. I know his experience on the streets has taught him that most people won’t even look you in the eye. I also hope he takes that bus to Michigan, and receives the care and treatment he needs.
I’ll keep the glasses. I’ll fix them up with my prescription. I’ll wear them as a reminder of Brian, our shared illness, and I’ll try never to forget the power of hello.
Who can hope when they never know when the darkness will arrive?
I have a key that I wear around my neck. My husband bought it for me in a shop in Seaport Village. The word, CREATE, is stamped on the key. It was made by the homeless in Los Angeles as a program to help get people off the street. The key came with instructions. I am supposed to wear it until what I am hoping for, working towards, or dreaming about, comes true. Then I am supposed to give the key to someone else so they can wear it until their hopes, dreams, etc. come true. After giving away the key, I am supposed to write my story about the key and who I have given it to and why (they have a website for tracking keys and their stories, also they have other words to choose from besides, create).
The first few months I had the key it sat in its original powder blue box on our counter. I thought about giving it to one of my writer friends. Every day I would look at the box and think, I should wear that, or I should give it away.
About six weeks ago, I took the key and chain out of the box and put it around my neck. I’m not used to dreaming about things that I can accomplish. My illness and the consequences of bad choices, have kept me from having too many hopes or dreams.
Shortly after putting the necklace on, I sat down on my office chair with the chain around my neck and the key in my hand staring at the word, CREATE. “What do I most want to create?” I asked myself. The answer was simple, “Essays. Not poetry, the lost dream of my pre-schizophrenia days. Even though I have published a fair amount of poems, I want to write essays.” I answered myself.
The desire to write essays is relatively new to me. I always dreamed of being a poet. I wrote my first nonfiction piece in graduate school about fifteen months ago and it was very well received. I started falling in love with nonfiction at that time. My dream was to write a memoir about living with schizophrenia. I had that dream for months. I went to workshops about memoir, and I hired a writing coach. I entered a piece of the writing I was working on in a competition where the winning pieces would be performed as monologues in a theater. My piece was accepted and will be performed next Tuesday.
During the writing of the memoir, I published a short book of essays and poems about my life, mostly about living with schizophrenia. After the publication of the book, I started to lose all interest in finishing my memoir.
Now when write, I work on essays. I am having pretty good luck getting my essays published too. I have a dream of writing ten publishable essays over the next ten or eleven weeks. I have a short bucket list of publications that are my ultimate dream of getting accepted in.
For the first time that I can remember, I am starting to dream. It feels hopeful, bright, and good.
Once in a while I jump way ahead of myself and think about the story I will write when I give the key away. Back up, slow down, one word at a time.
Last night my husband and I went to a dance show. It was a ballet of Alice in Wonderland. Some of the music was by Pink Floyd, but played by an orchestra. It reminded me of this mash up piece I wrote in graduate school when I was trying to show some of the nonsensical nature of schizophrenia.
Syd Barrett was one of the original members of the band Pink Floyd, when it was called “The Pink Floyd.” Early in his career, he developed schizophrenia (at least that is what most people believe his diagnosis was) but he continued to write songs. This is a mash up of one of his songs and the tea party from Alice and Wonderland.
Syd Barrett Has Tea with Alice
Have some wine, Syd, said March Hare.
Syd replied :
Trip to heave and ho
Up to and fro.
Come, we shall have some fun now, said Alice.
So trip to heave and ho
Up down to and fro
You have no word
Exactly so, said Alice.
Close our eyes to the Octopus ride, said a voice in Syd’s head.
I do, said Alice.
Isn’t it good to be lost in the wood?
Isn’t it bad so quiet there in the wood?
Hatter said, Not the same thing a bit!
Meant even less to me than I thought;
With a honey plough of yellow prickly seeds,
Clover honey pots and mystic shining feed.
Well the madcap laughed.
Hatter asked, It is the same thing with you?
Close our eyes to the Octopus ride, said the voice in Syd’s head.
The madcap laughed.
Syd started a poem:
The winds ain’t blew and the leaves in white
They’ll never put me in their bag
The seas will reed you’ll always see
So high you go so low you creep
Have you guessed the riddle yet? said the Hatter.
Alice asked, Is that the way you manage?
Close our eyes to the Octopus ride, said the voice.
It’s always tea-time, said Hatter.
Alice asked, But what happens when you come to the beginning again?
At any rate I’ll never go there again…
And they all replied:
Trip to heave and ho
Up down to and fro
Close our eyes to the Octopus ride.
There is a lot of shame that comes from being psychotic. The bizarre things you say and do, and for someone who lived “undercover” for twenty years, it was almost impossible to explain away the hallucinations and delusions. Shame isn’t the only thing that periodic episodes of psychosis have left me with.
Psychosis has stolen my keepsakes. When I am psychotic, for whatever reason (some irrational delusion, or a voice tells me to) I throw away all the things I have been keeping that are sentimental. I have thrown away all my baby pictures, all the pictures of my grandparents, all my former writing, artwork that friends made for me, etc.
It is heartbreaking. I try not to think about it. The regrets from a mental illness already stack up like a Lego tower, and I don’t want to add more heartache to that tower for fear it will one day tip over and take me with it.
The things I have missed most are the pictures and my early writing.
Before I was diagnosed with a mental illness I was becoming a successful poet. After I was diagnosed, the medication dulled all of my creativity. I stopped writing completely for many years. The loss of the ability to write was one of the most painful losses I have experienced in my life. After twenty years, and the correct medication, I can write again, but I am still not even close to having the level of creativity I had in my twenties, pre-diagnosis.
Yesterday, a package arrived from a friend I have known for over twenty years.
When I opened the package, the tears started immediately. Inside, was some of my writing from 1993. I read through it immediately.
Wow, I miss that young woman. Wow, that young woman had guts, and hope, and ideas. Wow, that young woman was truly an artist and activist.
Here are a few things that young woman, who was smashed in her prime, had to say before the chemicals in her mind went in all different directions due to genes and medication:
“I don’t have a label for her. Maybe, that is why I love her. There is no container to keep her confined.”
Then there is this poem:
He is my everything, my all, my more (never less),
my hope, my dream, my soar to the sky,
my crash to the earth,
my tongue all tied,
his ears always open.
Our throats deep with the syrup we do drink
from one another.
And a very short poem:
Just Say Sleep
A little nap
a few Z’s
go to bed early…
wake up late.
Life’s internal way to cope.
Sleep is the dope,
I use too much.
There is much more. Mental illness is a thief. If had spent the last twenty two years building on her writing…twenty two years is a long time to grieve the loss of a young woman in her prime. I got a glimpse of her again through her writing. I missed her today, more than usual.
Leave it to a group of poets to create the best memorial (celebration of life) I have ever been to. The last funeral I went to, I got the giggles so badly, because the whole thing seemed so absurd. A pastor who barely knew the deceased read off a list of things he had been told by her family. There was nothing connecting me to the memory of the person I once knew.
But yesterday was different. Way different.
I wrote several weeks ago that my mentor, teacher, and friend, Steve Kowit, had unexpectedly died.
Yesterday a group of his students, that I have been studying poetry with for two years, gathered in the home of one of our fellow students. We sat around in a circle in the living room. There was coffee, homemade brownies, a variety of nuts, and bottled water.
We talked about our future as a group. We talked about how to proceed without our beloved Steve. We decided to meet as before, on the last Sunday of the month, and work our way through a poetry workshop book that Steve wrote called, In the Palm of Your Hand. We decided to take turns facilitating the group. We all agreed no one could step into the shoes of Steve.
After we had taken care of business, we started talking. It happened naturally. One person told a story about Steve, about the suspenders he always wore, about how he used to ask us to raise our hands if we didn’t understand the poem we just heard, about how he used to force snacks on us.
The stories continued. People brought out poems and we went around the circle, and most people read a poem or two that they had written about him since his passing. I cried so hard, that tissues were handed to me in every direction. Most people cried. I found it the hardest to keep my tears under control when the men cried. All of our hearts were breaking.
Then someone would say something and we would laugh, from the deepest parts of ourselves.
We sat that way for three hours telling stories about “Our Steve” about a man who had made such an impact in all of our lives. We laughed and cried together. We shared our grief, our heartache, our sorrow. We shared our incredible loss. We shared our love.
And we bonded. And we healed. And we found a way to go on, a way that would have made Steve happy. In fact, the whole gathering would have made him happy. We talked about the man. The real man, as we all knew him and loved him.
We honored his memory in our togetherness, in our laughter and in our tears.
Leave it to a group of poets to make me feel every high and every low for three straight hours and want to see them all again as quickly as possible, because they hold the magic of memory and healing in their words.
It’s not good-bye. We will still have his words to guide us maybe we will even leave the chair at the head of the table open, so he can join us as we critique our art in the way he taught us, with laughter and love.