I have a new post on Psych Central. The link is here. It would be great if you would pop over there and give my other blog some love. Thanks!
My husband and I went to several museums this past Monday. There was an exhibit (two videos) that an artist created to play with physical space and psychological space (I will write more about it on my Psych Central blog).
I tried to watch the video but after a couple of minutes my legs started to bounce up and down (a sign of increasing anxiety) and I started to wring my hands. After a few minutes of ever intense anxiety, I left the film.
I walked back out into the museum, and the docent was there. He looked at me questioningly. I said, “I couldn’t take that film. It made me so anxious.” Then I decided to do something I rarely do. In fact, I think I have only done it one other time. I said, “That kind of artwork is too much for me. I have schizophrenia.”
The docent didn’t flinch. He didn’t back away. He started talking about the film and said, “Did you watch the second film in the other room?”
“No,” I said.
I was distracted while he was talking to me because I kept thinking, “I can’t believe I just told him in casual conversation that I have schizophrenia, and he didn’t react at all. It was as if it was the most natural thing to say. No surprise. No confusion. No shock.”
The docent was telling me I should, at least, go back and see a little of the second film. I told him I would try. I went back down the hallway and sat in the second room of the art installation.
Both films dealt with voices. I know something about voices. I know about the type of voices that overtake my head, and I know about the type that helps me represent and express myself.
In the eleven months since I came out publicly with my diagnosis, I have found my voice in writing and speech. And each time it is heard or read with respect and dignity, I gain more strength, more power, more words, and more confidence to continue using it.
If all goes well, you’ll hear me at parties, business meetings, luncheons, and dinners talking about schizophrenia as if it were any other illness, and isn’t that the way it should be? I’m moving forward – one step, two steps, three steps. Soon I will be running, but we’ll hold hands so we can keep the pace of the change together. Let’s not leave anyone behind.
I have given up on the word, crazy. When I first became an advocate that was one of the words I wanted to hear less, but it is used so frequently and in so many ways that I don’t have a word to replace it.
I can’t think of a word to use in as many ways as crazy.
Last night, my husband and I were having dinner with some of his family, and almost all of us said the word, crazy, in a span of five minutes, even me.
My mother-in-law said, “We watch a show in France about crazy Americans.”
After listening to the details of the show, I said, “I think she means eccentric Americans.”
While we were still talking about the television show, my niece said, “That’s crazy!” into the screen of her phone.
Someone said the food was “crazy” good.
We couldn’t understand the accent of our very kind server, and I said, “This is crazy.”
I don’t know how many times we used the word crazy last night, but it was very popular at our meal. I know that all it would take is some thought, and a more creative and robust vocabulary to replace crazy in all of those sentences. But as people, most of us are lazy. We want to speak as we have always spoken, and we like to use words that are in fashion. We also want what is easy and what is comfortable.
I’m going to try to expand my vocabulary so that crazy is not a part of my speech, but I don’t expect everyone to do the same thing. Crazy has become an overused, lazy word for so many situations that it is going to be a while before it falls out of favor.
I can’t use my energy and wear out my welcome with people by pointing out that crazy is offensive every time I hear it. Besides, when people use it, it seems to mean everything from extraordinary to bizarre. There is no one way to define crazy; there are thousands.
Crazy is currently a catch-all slang word. It will eventually fall out of fashion, but until then I am going to fight battles that are easier and more important to win.
I’m going to make an effort to use my dictionary more and get rid of this word from my speech, but honestly, for right now, the whole thing makes me crazy.
Internalized racism is the closest term I can find for what I think happens to many people who are mentally ill. Most of us living with schizophrenia haven’t had the diagnosis all of our lives. I was twenty-eight before my first diagnosis. At twenty-eight, I already had an opinion on mentally ill people. At that age, I didn’t know anyone who was mentally ill (or at least openly mentally ill). I was frightened of people who showed symptoms of being psychotic –talking to voices, yelling, etc. Like many people, that was my idea of “crazy.” Of course, when I received my diagnosis, all the images in movies, music videos and all the characters in books, etc. that were a depiction of the mentally ill became internalized. I thought of myself as all the stereotypes, all the myths, etc.
I was ashamed of my diagnosis (which at first was bipolar). In fact, I kept looking up all the famous people who were diagnosed with bipolar disorder to find hope, to put myself among geniuses, to build my fragile self-esteem. Later, when I received the diagnosis of schizophrenia I was, even more, ashamed because like everyone else I had heard and believed that it was the “most severe of the mental illnesses – the worst of the worst – a lost cause.”
I prefer to be called a person with schizophrenia. I prefer that all people recognize the fact that I am a person before identifying me as a person with schizophrenia. I prefer this in the exact way that people with other diseases identify – someone with cancer, a person with diabetes, etc. There is a kind of movement among people who have schizophrenia to call themselves, schizophrenics. That word hurts my heart and burns my ears. I am not a schizophrenic. I fight every day to be defined by things besides my illness. I am a woman. I am a wife, daughter, sister, friend, writer, etc. There are so many facets to my life, and I would hope that the very last way that people choose to identify me or know me as is a person with schizophrenia. It is an illness. I don’t want to be identified with that part of me that is the part I would get rid of, or cure if only I could.
But I don’t get to dictate the experience of others who have schizophrenia. I don’t even want to. I don’t want to silence the voices or the opinions of people who have the same illness as I do. In fact, I encourage people who want to write about, create, or produce something with a character that has a mental illness to include people with that mental illness in the process. We should be consulted about artwork, books, movies, etc. that depict us. We should have our say in how our experiences and illness is portrayed to the public. In essence, we should be allowed to write our narrative.
So, with people who want to be called, schizophrenic, I am uncertain if it is pride they feel in their diagnosis – a way to identify that they are not ashamed of (in which case, that is great for them, but doesn’t work for me), or if they have internalized the messages that come daily from the media and from artists of all kinds suggesting that we are our illness. I don’t know the answer to this, and I assume there are some who have internalized negative messages, and others who are proud.
I do know that although I prefer one way over the other, my way is neither right nor wrong. People get to ask to be addressed or call themselves whatever they want. But I do hope that people who want to be called, schizophrenic don’t see themselves as their illness before they see the complexity of all the other things they are, but if they do, it isn’t my place to tell them to do things differently. I only hope it doesn’t create an atmosphere for me that I find insulting and limiting. I am so much more than a diagnosis, and I work hard for the world to see it and know it. I hope calling people, schizophrenic doesn’t become the norm – it doesn’t work at all for me.
Traditions can be the framework of a year, and they can tie one year to the next, marking each season for celebration.
My husband and I like to add small, easy to complete, traditions to our lives. We buy each other stocking stuffers each year, and on Christmas Eve, we fill the stockings and hang them before going to bed. We also make a list on New Year’s Eve of resolutions (goals and dreams) for the next year. Every year on Valentine’s Day, we remind each other that every day is about love, and we should celebrate our love 365 days, not one day and not by buying chocolates or jewelry.
Because we love little traditions, I look for ideas to incorporate into our lives throughout the year. Yesterday, on a writer’s Facebook page, she wrote about picking her word for the upcoming New Year. She said in a past year, she had picked the word, “rest.” I have forgotten the word she picked for 2016, but I think it was “outside” because she is a literary travel writer and spends a good deal of time hiking and camping in remote places in the world.
I love the idea of picking a word for the upcoming year. I think it is an easy ritual or tradition that my husband and I can complete while doing our New Year’s resolutions each year. I have already thought about it, and I am going to pick the word, “attempt.” It embodies my hope for 2016. I hope to try more things, and combat the worsening symptoms of my illness like social isolation, lack of motivation, and social anxiety.
In the Oxford Dictionary and Thesaurus it lists these words and phrases for attempt: seek to achieve, complete, or master (a task, action, challenge, etc.) try, undertake, take on.
I need to expose myself to more things. I need to try more foods, travel more places, write more essays, send more essays out, network with more people, build more friendships, in other words, I need to attempt so much in order to grow my life and world bigger (combating the crushing walls that my illness tries to build).
I love my word, “attempt.”
Can you think of a word you would like to define the upcoming year for you?
activist, advocacy, Advocate, bill, bipolar, congress, depression, governement, hospital, inpatient treatment, letter, mental health, mental health reform, mental illness, mentally ill, psychiatry, psychology, psychosis, schizophrenia, words
I wrote a letter to my representative in Congress about the Helping Families in Mental Health Crisis Act. After I wrote to her, I read the bill in its entirety, and discovered it is a pretty good bill, but it has a couple of things that alarm me.
Changing the rules regarding HIPPA is a concern for me. I think allowing anyone access to another person’s medical information leaves too much room for abuse. In a previous post, I explained how my husband and I get around confidentiality in terms of my treatment by signing a waiver to allow my husband access to my medical information and the opinions of my doctors. We always arrange this as soon as we see a new doctor so that the doctor can keep the paperwork on file, in case anyone questions him/her about talking to my husband.
My other concern is a part of the bill that funds outpatient treatment. I’m not sure exactly how this would work but somehow “they” could force people to take their medications in order for the mentally ill person to live in the community. It is called Assisted Outpatient Treatment or AOT. In theory I agree with this because I know that frequently if people would comply with their medications they would function at a higher level, and be able to keep their housing and possibly avoid a crisis. I said I was concerned about this but I am by no means completely opposed to it. I just worry about how this would actually work when transferred from paper to the real world.
I want to see more psychiatric beds available across the country and I pointed this out to my representative. There simply aren’t enough (not even close) beds for those that need this level of treatment. I would like to see a big portion of the money go to inpatient treatment facilities.
I also wrote that it would be nice if mentally ill people were asked these questions and helped to draft these bills instead of always listening to families and advocates. I pointed out that many mentally ill people are capable of adding input and experiences about things that will ultimately impact their/our lives. I wrote this because I saw that the bill had the support of some advocacy groups that I find very offensive and questionable in terms of the rights of the mentally ill and in terms of how they present issues regarding the mentally ill. I can think of one advocacy group in particular that perpetuates the worst possible stigma surrounding severe mental illness almost daily in their social media.
I let my representative know that I am available to talk, e-mail, come to her office, etc. I have no idea if she would ever take me up on this, but it would be great if she did.
If you have a chance to read the bill, I encourage you to do so. You can find it online. If you love it, hate it, agree with parts of it, or disagree with the whole thing, I suggest you write your representative. Now is the time to be heard. Even if you don’t agree with me, your voice is important. All of our voices are important.
This is one of those times when we can be heard about the mental health system in this country. It is time to stop complaining about the broken system and take action to fix it. There is power in your words, experiences, and circumstances – use your power to make a difference.
activist, Advocate, avocacy, bipolar, depression, hope, hospital, inspiration, medication, mental health, mental illness, mentally ill, psychiatry, psychology, psychosis, schizophrenia, voices, words, writing
She wrote, “Every mothers’ worst nightmare is to have her child diagnosed with a mental illness, especially schizophrenia.”
Really? I would think the worst nightmare for a mother would be to have her child die. There is no hope with dead. Dead is dead. With depression (which is a mental illness) there is hope. With bipolar disorder, there is hope. Even with the “dreaded” (and I can’t tell you how tired I am of reading this stuff especially from people who call themselves advocates and are trying to create and change policies) schizophrenia there is hope.
I understand clearly that schizophrenia is different for everyone. I write that truth on a regular basis. I have a cousin in a state hospital and she is battling her illness in a terrible way. But there is still hope for her. No one has given up on her. No one has given up on the hope for improvement or change with a new medication, or a breakthrough in the mind. It happens.
I was actively psychotic for six months, and I had no idea I was psychotic until one day I had a little breakthrough of fear and reason. That breakthrough made me call my husband at work and ask to be taken to the hospital. At the hospital the doctor on call, said, “I don’t know you, but I am comfortable upping your medications a little.” He did that, and within two days, there was only a strange echo of the voices left – like a hollow whisper. Then they cleared up completely.
It can happen. I know for a fact it can happen, because it happened to me. Six months is a long time to be psychotic. My husband could have threw up his hands and said, “My wife is never coming back.” But he didn’t. He knew nothing about a possible breakthrough, or the hope of changing medications, yet somehow he still managed to have the hope that things would get better.
I’m not saying schizophrenia is easy on a parent. I am sure it is heartbreakingly hard, especially when you have the memories of what your child was like before the illness – usually, very intelligent, happy, successful, social, possibly athletic, or even an artist, etc.
I know schizophrenia can be devastating, but to continually tell those of us that have it that it is the “worst nightmare” the “most dreaded diagnosis” “the most severe of the mental illnesses” and the other ways that so many people put this, is so damaging to those of us who live with the illness and have easy access to those opinions (blogs, a writing conference, articles in the newspaper, articles in magazines both online and in print, and on television).
What do you think it is like to live with what you know people think of as “the worst nightmare?” It hurts your self-esteem, and it makes you want to stay in hiding. I was in hiding because of stuff like that for over twenty years. I finally came out, and there are days when I wish I could take all that I have written back, and hide my diagnosis. I’m not living with my spouse’s worst nightmare. You can read what he told me living with a wife with schizophrenia is like here.
There is hope. There is hope. There is hope. People try to take the possibility of hope away from those of us who are suffering by the choice of their words. I will give those words back constantly, because without hope there is no point in living, and then people end up dead. And that is where hope ends.
Hope. Hope. Hope. I have enough to go around, just ask me and I’ll send you some. Don’t be shy, my heart is full of it.