Tag Archives: activist

Out Of The Closet For A Year

16 Wednesday Mar 2016

Posted by in articles I wrote, mental illness, schizophrenia, Uncategorized, writing

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Yesterday marked my one year anniversary of coming out of the mental health closet. Many of my family and friends found out by reading a Facebook post that I have schizophrenia. You can find that post here. 

I started this blog about living with schizophrenia on March 19th, 2015. I have written hundreds of short essays and posted over 370 times.  I missed posting 25 days in the last year (that means I posted on over 300 days).

I have a blog on Psych Central that receives way more traffic than this blog. I have posted over 30 articles on that site. You can find that blog here. 

I have written 13 articles that are posted on The Mighty.You can find them all here.

On Christmas Eve 2015, I was featured on the People website. The article was shared over 2000 times.  You can read the article here.  

I had a short book of poetry and prose published. You can purchase it as Amazon (it is currently selling for a fraction of the publishing price – last time I checked you could buy it for $1.62). Pick one up here. 

I have been interviewed by several websites, magazines and had my book reviewed by Wordgathering. You can find that review here. 

I also took several creative writing classes.

I didn’t accomplish all that I wanted to, but I do hope that some people understand schizophrenia a little better and that in some way, I have made life easier for people with a severe mental illness.

Incredible ride. Incredible year.

 

 

Your Blog: Using Your Words To Change The World

01 Sunday Nov 2015

Posted by in hope, mental illness, schizophrenia, writing

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Success and rewards is the only way I can describe what I feel after attending the last day of the conference. My husband and I came up with a plan after two days of debilitating anxiety, and the plan worked. What does this mean? It means I can sign up for other conferences in the future and continue to network with writers and learn from their experience – something I feel I really need while I am just starting to develop a career in writing.

What does this mean in even bigger terms? Schizophrenia didn’t get the best of me. Yes, I have limits, yes, I have set backs and bad days and experiences, but as long as I keep pushing and keep going forward and refuse to give up, the game is not over for me. Life is still there for me to live and to get the most out of it that I can. Not every little thing is good. Not every little thing is easy, but life is still beautiful and I am still on my feet and walking even if all those around me are running. I’ll get there. I may be slow, but there can be growth and contemplation in time spent moving slowly. Not everything has to be face paced.

If I wouldn’t have tried that one last time, I would have missed a talk that was so inspirational. The panelists talked about making our writing personal while also writing about things that concern the larger community. This is something that many of us do on our blogs. We write about our own lives while intersecting with issues that are important to society. For instance, I write about my own experience with a mental illness but I often write about a lack of treatment for people, the history of care of the mentally ill in this country, stigma and discrimination.

These issues are not just about my personal life, they intersect with the whole mental health community and society as a whole. And to make it all more fascinating, everything I write also intersects with the experience of being a woman. I also frequently tie the experience of one minority group (the mentally ill) with that of other minority groups (people of color).  This gives my writing layers that are not only interesting to read, but the writing becomes part of all of our experience. Of course, many bloggers are doing the same thing with their writing and blogs.

In other words, you bloggers rock the Internet world! I have often said that artists (writers included) are the culture changers. It is our ideas, and our images, photographs, graphic, paintings, words, movies, television shows etc. that influence the rest of society.

At the conference I learned there is a great responsibility to inhabiting that role in society. Not only can you educate, inform, generate conversation, expand minds, and interpret events, you can influence people in the choices they make, the way they see the world, the way they treat others, and the way they live their lives. That is a huge responsibility full of possibility.

We have all been given this incredible platform for using our voice, and with that comes an incredible responsibility – I was able to hear people talk about the importance of that today and it changed my outlook about my writing and your writing. If you have five readers or you have five thousand readers, your voice is having an impact on the larger world – something important to think about before hitting send.

Having Dreams and Having Schizophrenia

19 Monday Oct 2015

Posted by in hope, mental illness, schizophrenia, travel, writing

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I frequently tell people not to let schizophrenia steal your dreams. I have said, “Your dreams may change, but don’t let schizophrenia steal them.” What does that mean for someone who has symptoms every day, but still has a heart full of dreams they want to experience?

There is a writing fellowship that I want to apply for, and if I were chosen, it has the potential to change my life, but as a participant, I would have to go to another city for a month.

The first consideration is getting there. I rarely travel without my husband (on a few occasions I have flown to one of my parent’s houses by myself). What if while I was there, in a strange city, by myself, that I had a panic attack? My husband and I rarely spend any time away from one another. I feel like my husband is an extension of my body, and to be removed from that would be disorienting and painful.  If I had symptoms of paranoia (which are frequent for me) there would be no one to talk to me about reality. I know I would experience extreme homesickness which can make a person physically ill.

I’ve never lied and said that having schizophrenia is easy. I have said, “We need to work harder than other people,” and I believe that is true. We have to work harder just to get to the place where others are waiting on the start line. In order to get the finish line, we may have to battle monster after monster and still keep our feet and arms moving.

This disease is not for the faint of heart. I believe people with schizophrenia are some of the strongest and most courageous people I know – we fight real stigma, discrimination, and at the same time we fight the war that goes on in our minds. We also know that there are often casualties of war – I’m not going to let my hopes and dreams be one of those losses.

Those things and more are the mountain in front of me, but I have decided to submit an application to the program. If I get to the point where I am actually accepted into the program, I will begin worrying about the gear I will need to make that climb.

The strange thing about having a good life while living with schizophrenia is that you constantly have to overcome obstacles to get to the desserts. Where do we get the energy and resources to put up the fight every day? I don’t know. I do know that some days I am better at making my way up the mountain, to the finish line, to the dessert table than others.

No matter what, I keep moving though and I know there is chocolate lava cake just around the next corner and I want to get there, sit down, and take a bite.

Let’s get moving, there is certainly enough cake for everyone, and it’s no fun eating it without your fellow warriors.

To All The Kennys Everywhere

08 Tuesday Sep 2015

Posted by in mental illness, relationships, schizophrenia, writing

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Back in the nineteen-seventies when I was in grade school, kids with special needs usually went to a different school than children without special needs. When I was in fifth grade there was one boy, Kenny, in my class who was diagnosed as hyperactive. Kenny sat a seat or two behind me and would constantly kick the seat in front of him, drum on the desk, occasionally touch one of the other kids, and once in a while say something in the middle of class. All of the kids tried to avoid Kenny because we weren’t used to seeing kids with disabilities and Kenny was very disruptive.

One day the school psychologist called me out of my math class. “Do you know Kenny?” He asked.

“Yes.” I said.

“Kenny listens to you. I need you to help Kenny follow the rules and settle down in class.”

“Okay. I’ll try.” I said.

My heart sunk when I went back to class. If I befriended Kenny the other kids would make fun of me. I didn’t know what the adults expected me to do. I also wondered why Kenny picked me out of everyone in class to say he would listen to me.

After that day, when Kenny would kick the chair of the student in front of him, or start drumming loudly on his desk, I would say, “Stop it, Kenny.”

I tried to help without giving too much attention or kindness to Kenny. I didn’t want to be seen as someone who liked him, or wanted him as a friend.

Over forty years later, I am an adult woman with schizophrenia and every time someone posts about my diagnosis on one of my social media accounts many people unfriend me. I can only assume people don’t want to hang out or be seen with the woman with special needs.

If I could go back to fifth grade, I would pull up a chair beside Kenny and hold his hands to help him keep them still. I would talk to him, and eat lunch with him in the cafeteria. I would be a friend to him even if the other kids made fun of me (especially if the other kids made fun of me).

This schizophrenia has given me radical compassion and radical acceptance. I can’t be sorry for that. I just can’t. If there is someone uniquely-abled in your life, I encourage you to embrace them, because if you don’t, you may one day be filled with a sense of regret and a missed opportunity to love and that is always tragic and deeply painful.

Advocacy: The Time is Now

19 Wednesday Aug 2015

Posted by in mental illness

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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.

Don’t Take Away our Hope with Your Words

18 Tuesday Aug 2015

Posted by in bipolar, hope, mental illness, schizophrenia

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Yesterday I read a guest blog post from a mother whose son has schizophrenia.

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.

Stigma in the Writing Community

06 Thursday Aug 2015

Posted by in mental illness, schizophrenia, writing

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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.

Dear Corporate America

31 Friday Jul 2015

Posted by in schizophrenia, writing

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Dear Corporate America,

I am writing to you to inform you of my desire to work for your company. Let’s get one thing out of the way first, I have a mental illness. Why do I think you should hire someone with a mental illness? You say that you like people who can think outside of the box and that is a strength you are looking for. Well, those of us with a mental illness can easily and quite naturally think outside of the box. In fact, some of us have even experienced different realities and may be able to put a twist or a spin on that problem you are having that you never even imagined.

You mention that you value creativity. Most people with a mental illness are creative in one form or another. They haven’t proven it yet, but there have been several studies conducted trying to link creativity and mental illness. So far, the results appear to be in our favor.

You claim to value team work. We are masters at working on a team! We have a psychiatrist that we work with, a therapist that we work with, a general practitioner, group leaders, family, and anyone else who is concerned about our care. We work on a team considering the most intimate details of our lives. I am certain we can handle working on a team in a corporate environment where our lives are not at stake.

You wanted me to address my strengths and weaknesses. For those of us with a mental illness, that is the same thing. Our strength is that we battle a mental illness every day. Our weakness is that we battle a mental illness every day. It is really the same thing. Consider it for a moment, and you will see this is an example of us thinking outside of the box, or using our creativity. What forces us to be strong, also makes us weak.

You advertised that you want someone that is detail oriented. Those of us with a mental illness have trained ourselves to notice details. We pay attention to our environment for triggers that will set off our anxiety or paranoia. We pay attention to our sleeping patterns. We make notes about our moods, and our medications. We share most of these details with a team (back to our strength as team players).

I know you didn’t mention it in your ad, but I know it is of great concern to issues of morale, people with a mental illness won’t add negativity to the work environment. We will be so concerned about people judging us, and underestimating us, and seeing everything we do through the lens of mental illness, that we won’t have the time, courage or energy to gossip, complain, or bad mouth any of our coworkers, bosses, or policies.

You wanted me to mention my experience in regards to the position you are hiring for but I know the fact that I have a mental illness is the biggest obstacle you have to overcome before you hire me, so if you can do that, I’ll tell you about my previous experience in the interview. I have actually had some great jobs.

Thank you for your time and consideration.

You are more than your Illness

29 Wednesday Jul 2015

Posted by in bipolar, hope, mental illness, relationships, schizophrenia, stigma, writing

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For those of us with a mental illness we are often focused on the details of our lives, because the details of our daily lives often reveal our symptoms – so we pay attention. We might also see a psychiatrist and tell her/him about what is happening to us. We might also see a therapist and again talk about what is going on with us. Then there is writing. We might also keep a journal or a blog and write for therapy or write to educate others about what our particular mental illness is like from the inside.

That is a lot, a whole lot, of focusing on the self. How do you look so closely at the self, and focus so closely on your illness without completely defining yourself by your illness? If you spend the majority of your day going over the symptoms of your illness, then the majority of your life is given over to that illness. I don’t want the majority of my life to be given over to my illness.

I want to write about paranoid schizophrenia, but I want to be defined by much more than that diagnosis. It isn’t enough to just to say that, and hope that people respond to me in a way that proves they know there is far more to me than being mentally ill. I have to create the environment and situation where I treat myself, and show others those other parts of me. There are ways to help people see beyond our illnesses.

Volunteer – many of us can’t hold down a regular job, but may be able to use a skill that doesn’t bring on symptoms to help others. What I do has to be done from home, or with my husband because of my increased social anxiety. There are many non-profit organizations looking for help with their newsletters, or with grant writing. If you can arrange to spend a couple hours a week helping from home that will be a couple of hours that you are giving to others instead of focusing on yourself. Volunteering has been proven to have many mental health benefits, so this is really a winning situation – time off from thinking about you and time where you are benefiting others.

Ask a Friend to do one of Their Favorite Things – Do you have a friend that loves indoor rock climbing, or going to the latest movie release, or seeing their favorite band play live? Try to do something with your friend that they love to do and you will then have experiences in common and things you are sharing besides your mental illness. Your friend will begin to see you as a rock climbing partner, or movie date, or concert enthusiast rather than a person with a mental illness.

Feed your mind and soul – do something that forces you to take your mind off of your symptoms and the details of how you are doing. Occupy your mind with inspirational books, art shows, movies, etc. Not only will it give you so much to think about that has nothing to do with your illness, it will give you interesting things to talk about (and possibly more social confidence) when you are with others.  Of course, you may actually see or read something that inspires you to change your life.

Take a Class – I have tried to take in-person classes but have eventually failed at them because of the anxiety and the fatigue I feel from my medication that makes me have to take a nap. I can, however, take online classes. Online classes can help you learn something new, introduce you to people who are interested in the same things you are, and give you a complete break from dealing with anything regarding your illness. Also, if you finish, you will have a sense of accomplishment. And again, it gives you something new to talk about with people when you do find yourself in a social situation.

Find a Hobby – Try to find something that you are passionate about that is creative. There is a trend in the country right now for adults to color and there are many coloring books for adults on the market (search Amazon) or you can print out patterns from your computer. Learning to do Zen Tangles is another hobby where you teach yourself to make simple patterns (at first) and as you get better the drawings become increasingly complicated. You can look for instructions for free online. Photography is also a great hobby, because it is not very expensive to start out with and there are many places to show your work online and become part of a community.

Writing – If you love writing and you keep a journal or blog about your illness, then by all means keep that up, because it can be therapeutic, but also give yourself other assignments. For example make it a goal to write one short story a week, or two poems. Write on topics that have nothing to do with your illness.

Include Something Spiritual – You define this for yourself. Meditation? Yoga? Church? Temple? Synagogue? Mosque? (I’m sure you could list far more possibilities).

We are all so much more than a diagnosis, but we can’t expect people to see past our diagnosis if all we ever do is talk about it.

Today I am going to write an essay about a time I fell in love. It will have nothing to do with schizophrenia. I am more than my illness, and you are too, come on, let’s show people, let’s shine.