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~ surviving schizophrenia

A Journey With You

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It Would Be Nice If Our Motto Was Do No Harm

06 Monday Nov 2017

Posted by A Journey With You in mental illness, schizophrenia, stigma, Uncategorized

≈ 6 Comments

Tags

demons, do no harm, Facebook, god, injury, mental health, mental illness, schizophrenia], stereotypes, stigma, wounds

I don’t usually lose my cool unless I’m in a car, but that is another story. Today, I lost my cool. On my Facebook feed, I saw a post by a woman that said schizophrenics (I hate that word) in America hear voices telling them to commit acts of violence but in India schizophrenics (that word again) hear voices that tell them to clean house. I have over one thousand friends in common with the woman writer who posted this and the last time I checked her post had eleven likes from other Facebook users.

At first, I left a comment telling her she was ignorant and wrong. Then I deleted that and left a message about it on my Facebook page with a big F.U. (something I rarely, if ever, do), and then I deleted that too.

When my husband got home from work, I couldn’t even bring myself to tell him what had happened. There is a wound that is caused by people’s ignorance. It is like being bullied. It is like being called names. It is like being an outsider who is misunderstood. Of course, the name for this type of incident is stereotypes and stigma.

People’s ignorance and terrible comments make me feel shame for an illness that I didn’t ask for or do anything to create. Schizophrenia is not a punishment from God or an attack from demons (no matter what some people would have you believe). It is a disease of the brain, just like brain cancer only it doesn’t require chemo or surgery – it disrupts the thought process (a tumor can do that, too). Also, schizophrenia doesn’t equal violence and what does some woman on Facebook know about hearing voices – her words are in reality preposterous.

What gets me about today, was that I lost my cool and that I was ashamed to tell my husband what happened. I didn’t want him to hear about how some people think about me, and people like me. I want my husband to be shielded from the cruel words and beliefs that others hold about my condition.

I want my husband to think the best of me, and I know that he does, because he knows me, loves me, and counts on me almost as much as I count on him. I just couldn’t take having him hear the negative way people think and talk about people with schizophrenia because I have schizophrenia so that woman was saying something about me.

Occasionally, the uphill climb to educate and inform people about my illness is too steep for me to get up. Today, I needed help, and I felt too weak to let the person in who loves me most.

So, does it matter when we stereotype, stigmatize and marginalize people – yes, it matters a lot. Words and actions are significant, and they can pile on injuries to people who have collected injuries all their lives in the same way that other people collect dolls or action figures. In medicine the oath is to do no harm, we should all claim that goal for our interactions. Do no harm. Do no harm. Do no harm.

It has a nice ring to it doesn’t it?

A Tiny Tale of Wonder

07 Wednesday Sep 2016

Posted by A Journey With You in Uncategorized, writing

≈ 4 Comments

Tags

articles, AWP16, essays, god, graduate school, magic, mentor, mermaids, MFA, teacher, universe, wonder, writer, writing, writing coach

So many people say they have magic or synchronicity or coincidence in their life. Maybe they mention fairy dust or mermaids. I call it all God. All those wonderful moments when you know the currents of electricity or the moon or tides or whatever have aligned in your favor and everything works out. It’s a mystery; those moments, those miracles are God for me, magic for you, amazing for all.

I had a writing mentor, but he passed away a year ago last April. I was heartbroken by the loss. He was a very successful writer and poet and extremely well loved. He was the first writer that I had met that believed in my work since I had returned to writing after a twenty-year hiatus. (The story of why I didn’t write all those years is sad, and I think I have shared it here on more than one occasion).

Steve not only told me what he didn’t like about my work; he told me what he thought was good about it. He wrote essays for me to get into graduate school to study poetry (and I got into both of the schools that received his essays). I knew that he was serious about what he said about my writing because he published some of my poetry in two different publications where he worked as an editor.

Sometime after Steve’s death, I hired a writing coach to help me write my memoir. I worked with the coach for many months before deciding I wasn’t ready or didn’t want to write my memoir. I have a serious problem with motivation which is a symptom of schizophrenia that gets harder to live with over the years. I stopped scheduling appointments with my coach.

I missed having the support of a mentor, an editor, a cheerleader and a friend.

On the one year anniversary of Steve’s death, I was at AWP16, the largest writing conference in the United States. Before attending the conference, I found out that a writer who I had traveled to Flagstaff Arizona to see (at another writer’s conference), was auctioning off a package of her writing services for a year. I looked at the schedule, and there were two other things I wanted to attend (actually, I needed to attend) booked at the same time as the party where the auction was scheduled. I was devastated, but then I discovered that I could bid in advance and not be required to attend the party.

My husband and I talked about how much we could afford to pay for me to work with this writer for a year. We decided to put the absolute highest amount we thought we could afford so that I would have a better chance at winning the auction. (At that time, I didn’t know that I could contact this writer and work with her. I thought the auction was my only chance).

The day of the auction I ran into a poetry professor who knew Steve and knew how much he meant to me. I told this professor that I had tried but been unable to find someone who filled those holes and gave direction to my writing life. Tears welled up in my eyes, and I felt the tremendous loss of such an advocate, teacher, mentor, and friend.

It was the day after the anniversary of Steve’s death when I was sitting in a disability panel as a representative of writers with a mental illness when I got the text. Mine was the winning bid at the auction. I nearly screamed out my excitement in that auditorium. I let my hands go over my head and pumped the air above.

Elizabeth Gilbert wrote a book, Big Magic; the book is about living a creative life. She writes a lot about those moments, those incidents when everything in the universe seems to be working toward a single goal that manifests itself before you, or in you, or around you.

I still miss Steve every time I write a new essay, or have an article published, but I believe in an afterlife and the continuation of spirit and energy. And I think he would have delighted in the fact that Anna and I connected. In fact, I think he arranged it.

 

Visitors

06 Sunday Sep 2015

Posted by A Journey With You in relationships, writing

≈ 10 Comments

Tags

baseball, brother, childhood, creative nonfiction, family, god, guests, heroes, hope, inspiration, magic, siblings, writing

My oldest brother is visiting. He is seven years older than I am. I can remember when I was a little girl, and my parents were separated, my brother would pack me and my other brother up and take us out to a neighboring town where our mom was waitressing, so we could see her before bed.  While we were visiting my mom, we would fold napkins for the tables, and when we left she would give us After Eight Mints which I thought were the fanciest chocolate in the world. My oldest brother would take us home and help us get to bed.

Today we are all going to a baseball game. Baseball has been a big part of my brother’s life. I remember going to watch him play when he was in high school. In grade school, like most young children who are exposed to both fantasy and religion, I believed a combination of the two, and I used to try to use “magic” prayers when it was my brother’s turn to bat in order to help him do well. I would sit there and hum, or recite the same word over again and again, with the full belief that I was changing the course of the game.

I loved my oldest brother, and I thought almost everything he did was “right” and “cool.” I am sure he is the first person in this world that I looked up to. I can remember that he used to keep Reeses Peanut Butter Cups in the freezer and tell us not to touch them. Even though I would open that freezer drawer and stare at that candy longingly, I never took one from his stash. I also remember that he had a pet mouse that he took with him to a baseball game one day and someone accidently killed it. My brother came home in tears. It was one of those times when I wished I knew the right thing to say or do, but I was still pretty young without a lot of emotional resources or experience.

When I was still in grade school, my brother made me a concoction of mouth wash and I’m not sure what else, and told me it was “White Lightening” and that it would give me super powers. I took the potion to school, and would drink it on the playground and then run as fast as I could. The teachers questioned me about it, and took it away from me. They may have even called my parents, I’m not sure. All I knew was that my brother had given me a bottle of super powers, and I was going to use it.

Today as I watch the pitcher warm up his arm, and the first batter step onto home plate, I will be thinking about the young boy who was one of my first caregivers and heroes – a boy who had a lot of responsibility placed on him at a very young age, and never took out the pressure on his younger siblings. I’ll be thinking about him swinging a bat and I might say a few “magic” prayers that this time he wins at something bigger than baseball. I want him to win in love and in life.

If You Don’t Like to Read About God, Skip This Post

05 Saturday Sep 2015

Posted by A Journey With You in writing

≈ 7 Comments

Tags

atheist, chiristianity, compassion, creative nonfiction, essays, faith, god, greed, heart, hope, illness, love, politics, religion, suffering, syria, war, writing

I saw a three-year-old boy in a red shirt and blue shorts, and baby shoes on his tiny feet. He was face down in the sand on the beach with the waves the only life left near his body.  And I wept because his death was man-made and with no consequences for the world that let him down.

Several of my nieces and nephews are atheists and we have had many discussions about Christianity, religion in general, faith and belief in God. So often, people will say “If there is a God, why is there so much suffering?” And my response is always the same, “The majority of suffering is man-made.”

I believe that God gave us most of the resources to prevent suffering, but we choose greed, politics, hatred, self-interest and a number of other things as a reason not to respond. There is no good excuse for anyone on the planet to go hungry. We have the resources to feed the world, and yet, there are people in the United States who are hungry, and people starving in various places of the world. We have the technology and money to provide clean water, and sanitation to the world, and yet it doesn’t get done. We have the means to vaccinate children to protect them from so many diseases that cut their lives short. And then there are the unspeakable tragedies of war – man-made killing and suffering at its most extreme, violent, and hateful.

Of course there would still be death and suffering even if we used our resources to truly help one another, but how different those deaths would be, and how different the experience of suffering would be if the person who was ill, or injured, or who had lost their home and family to an earthquake or tornado, knew that the world was a caring, gentle place, and that people would work together to ease their pain as much as possible.

Open arms. Open hearts. Open wallets. Action. Dedication. Compassion. Love.

You can tell me that “A Good God wouldn’t allow so much suffering.” And I will tell you that humanity is responsible for most of that suffering.

I saw the father of the three-year-old weeping. At first he held his three-year-old son, and then when that boy drowned, he held his five-year-old son, and when that boy drowned, he held his wife until she too died in his arms. There are only people to blame for the suffering of these lost lives and for the survivor’s grief. People created this tragedy.

God gave us the resources to ease each other’s suffering, but the resources are divided unevenly causing injustice, tragedy, and war. No matter how much you want to blame God, it would be more accurate to point at people, and in some cases, a mirror.

When I Go

18 Saturday Apr 2015

Posted by A Journey With You in mental illness, relationships, schizophrenia, writing

≈ 7 Comments

Tags

death, dying, god, mental health, mental illness, schizophrenia

I don’t know if it is a symptom of my mental illness, or just my character, but I think about death every day. If anything goes wrong or feels different in my body, I think it is terminal. That is an example of my anxiety, and fear.  There are other times though I think about developing an illness and dying, and I’m not frightened at all. I am totally at peace with it.

I have a couple of wishes about my dying. I want to have several months to prepare for it, and I hope that I go with a happy and peaceful heart. I want to be a person who is pleasant while dying. I want to share the experience with my husband and those who care about me without bitterness, anger, or depression.

I pray I can manage that.

If my wishes comes true and I have time to prepare for my death, I want to write my own obituary and plan my own funeral. I have already picked out one of the songs I want played several times (so people really hear the lyrics).  Here it is:  https://www.youtube.com/watch?v=yrotsEzgEpg

I also want to create a video collection for my husband over a month (or how much time I have).  I want it to be videos of me laughing, talking to him about things I think are important for him to remember, and a visual and audio recording telling him how much he is loved.  I want him to be able to turn on these videos and be reminded that someone thought he was the most precious person out of all the billions of people on the planet. He was, and will always be, number one for me.

I also want to have time to create twelve months of letters for my husband.  I want to give the letters to a friend to mail the first day of every month for a year.  That way I will be able to send my husband a message every month for the first year after I am gone. The letters would be encouraging. Telling him to try and be happy, to try and find things he loves to occupy his heart, his time, his mind.

When I think about what I want to leave behind in this world, it’s not much. I don’t care if I never make it to a best seller list. I don’t care if I never win a Pushcart Prize. I don’t care if I don’t have a lot of money to leave as an inheritance.

I want to leave some of my love behind, and the creative ways I found to love the most important person to me.

This is what I want my legacy to be:

Creativity and how I used that to honor love; a once in a lifetime love.

If you are reading this God, please take notes.

The Trouble With God

26 Thursday Mar 2015

Posted by A Journey With You in Uncategorized

≈ 1 Comment

Tags

christianity, god, hope, life, mental illness, religion, schizophrenia

I wish it was as simple as, do you believe in God?

Do you believe in the Bible?

Do you believe in Jesus?

Yes, to all of those things, but I have also believed I was Jesus.

I have spent months while psychotic, hearing the voice of God.

I have played video games with God and almost beat him.

I have walked through the streets of Los Angeles believing that I was not only witnessing the second coming of Christ, I embodied the second coming of Christ.

I have fed people food that I prepared while God told me which ingredients to add.  I believed that food would heal them.

God taught me to draw, to paint, to cook, and to sew.  God showed me how to make a Christmas tree out of copper wire and marbles that was one of the coolest Christmas trees I have ever seen.

God taught me how to decorate my apartment in a fantastic way.

I have known God intimately, at least while I was psychotic.  When I am stable on my medication, I go to church.

I try to sort out who the God of the Bible is compared to who the God of my psychotic mind is.  This is no easy task.

At times I miss the God of my psychotic mind.  He talks to me constantly and is wildly creative.  He shows me mystical and magical things.  He lets me in on secrets.  He tells me jokes that make me laugh.

The God of my stable mind is silent.

I reach out to him through prayer, but there is no clear answer.

I have a blessed life, and I thank God for each and every blessing that comes my way.  I believe he watches over me.  I believe he hears my prayers.  I believe he is ever present.

I believe someday I will meet him, and my first question will be, “If not you, then who?”

I think he’ll tell me he was there, watching over me, protecting me from myself.

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