Tag Archives: Voice

A Look Back Over Three Years

23 Wednesday May 2018

Posted by in bipolar, caregivers, hope, mental illness, relationships, schizophrenia, stigma, Uncategorized

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In March, I celebrated this blog’s third anniversary. In the three years that I have been writing about life with schizophrenia, I think I have tried to keep one message in the forefront, and that is, people with schizophrenia can look, act, care about, and live a life similar to everyone else.

Of course, I have also made sure to point out that everyone with schizophrenia is different. Just like everyone without schizophrenia is unique, so are we, and so is the way the illness manifests in each of us. Those of us who have schizophrenia may share similar symptoms, but how we experience those symptoms and the level to which they impact us varies tremendously.

I hope from reading my blog that people have more of a sense of compassion and understanding for those of us living with this brain disease. The biggest issue in helping is first to be able to relate to us as human beings. We were all born the same way everyone else was born. We all have or had a mother and a father.

Many of us have people who love and care about us, and that would be true if we were in the hospital, in prison or living on the streets. Just because someone has lost touch with reality and appeared to be a loner, doesn’t mean they don’t have family or someone looking for them, or that cares about their well being.

Schizophrenia is not yet curable, but for many people, it doesn’t have to be a life sentence. It is a chronic illness like other chronic illnesses, and it is possible for some people to manage it as such. (There are, of course, people who are medication resistant, or who doctors haven’t found the best or workable combination of medications to help them reach their full potential). And there are others who manage without medication at all (an impossible scenario for someone like me).

In my three years blogging, I have tried to write against stigma. I have tried to write against stereotypes. I have tried to put the most human face on schizophrenia that I possibly can. I have shared some of my childhood here. I have shared some of my heartaches here. I have shared some of my joys, my strengths, and my weaknesses.

I have tried to make myself as three dimensional, and as like everyone else as possible, because I believe before there will be a better treatment environment for the mentally ill, everyone has to see something in those struggling that reminds them of themselves.

This blog is dedicated to those people who can’t show you what they love, what makes them happy, what they hope for and dream about, I can only hope I have been a voice for those people. I want all of our lives to be better, and I hope I have created a bit of that here.

 

 

 

 

The Power Is Yours

03 Thursday Dec 2015

Posted by in hope, Uncategorized, writing

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There are times in our lives when we have to stop and look outside of ourselves. We have to put down our morning coffee and say, “I am tired of the status quo. I want to make a difference in this world. Things have to change.”

Today is one of those days. I am sure it is one of those days for many Americans. This year alone there have been 355 mass shootings in our schools, theaters, streets, and homes. I used to be afraid to go to Mexico because of the violence there, now I question getting on a bus or going to the zoo. Our streets have become a war zone and the casualties are mounting every day. If today is like most days this year, there will be another shooting today with more innocent lives brutally taken.

It is easy to put back in our earbuds and play our favorite music. It is easy to get out our cellphone and take a selfie on our way to work or to meet a friend. It is easy to close our eyes and think there is nothing I can do about this. It is easy to say, “I am helpless.”

The truth is you are not helpless. Changing this violence takes a few minutes of your time. There are things you can do to make a difference. Pick up the phone and call your local representative today. Pick up the phone and call your senators today. Tell them all that you want a sensible and immediate response to gun violence (the most obvious is background checks). Did you know even people that are on our “Don’t Fly” list in the United States can easily buy guns online and from gun shows? It is true and it is outrageous.

The other thing you can do is register to vote, and actually do it. Get out there and vote for someone who promises to address this issue. This is a time in your life that you can actually do something.

I have learned in this life that I am not powerless. I have money to spend (did you know every dollar you spend is a vote for something? If you buy it, that tells corporations, that you are okay with the place it is made, the way the workers are treated, the resources that were used to create it, etc. Money is a powerful vote). I also have a telephone and e-mail and write and call my elected officials regularly. (Does this make a difference? Yes, it does). I have a vote in every election and I get to the polls and I cast it.

There are other ways that I am powerful too. If I say that I care about climate change, then it is up to me to change my life – eat less meat, use public transportation, buy local, recycle, etc.

Our daily choices make so much more difference than we can ever imagine. Our daily choices impact corporations, politicians, the environment, and in this case, our action can be the voice of all those innocent lives. Those people who died deserve our voice and deserve our time.

How often in our lives do we get to say, “I did something that actually saved people’s lives?”

Here is a link to find the numbers for your senators and here is the link to find the number for your representatives. A few phone calls, a few e-mails – change is ours to help create.  No more status quo – today is one of those days.

 

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.

Not All Doctors Have Empathy Or Understanding

26 Monday Oct 2015

Posted by in mental illness, stigma

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I belong to a blogging group on Facebook where bloggers can ask each other questions about traffic, fonts, product endorsements, etc. One blogger, a medical student, posted that she received an e-mail from someone on the Internet saying that her blog name was offensive. The blog name was a play on the diagnosis of OCD.

I am not going to reveal the name of the blog here, because I don’t need to cause myself any problems, but she asked the members of the group if they thought the name of her blog is offensive (she even said the psychiatry students thought it was “cute”). There were nearly 200 comments on this thread and some people tried to explain that, yes, the name is offensive, because it makes a very serious issue something light, fun, and playful. Most people (probably 99%) wrote that they thought people needed to stop being so sensitive, and to stop being so easily offended and basically to lighten up.

This was one clear example of trying to keep the status quo, and trying to keep a marginalized and voiceless community in their place. I don’t think anyone would dare tell a person of color that something they considered to be racism wasn’t really racism and they just needed to lighten up, stop being so sensitive and quit being offended by “every little thing.” The very act of telling a person of color those things is racism.

People don’t get to define what life is like for those of us with a mental illness. They don’t get to define what language we find offensive, hurtful or cruel. Many times in my life a person who is gay or a person of color has asked me not to use a certain word. I have always apologized, and discontinued the use of the word. I don’t try to defend myself by saying, “lighten up” or “stop being so sensitive.” I have believed those people’s experience of the world and of language. It is time to start believing people who have a mental illness.

After the medical student with the blog, asked her question about the name of her blog, she wrote, “Do you think I am just being paranoid?” I think this proves she has bigger problems than just an offensive blog name. I think she needs to go to sensitivity training before becoming a doctor. She proudly wrote to everyone in the group that she had already gone through her “psych rotation” All I can say is those poor patients.  Honestly.

I Was Once Invisible

25 Sunday Oct 2015

Posted by in hope, mental illness, schizophrenia, stigma

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Before I hit the send button on these blog posts, I start to cry. If someone leaves me a supportive comment, I start to cry. If one of my articles is accepted, I start to cry. For the last seven months I have cried so easily. I often sit at the computer looking at a screen made a little fuzzy from eyes full of tears.

I realized yesterday, that I am letting go of twenty years of shame. I am letting go of twenty years of secrets. I am letting go of twenty years of humiliation, grief, and pain.

All those times at my job when people talked about a client with a mental illness, and how difficult they were, all those words that were used to describe those clients, like nuts, wacko, crazy, cuckoo, etc. I took all that into my spirit, into my psyche. “So, if they knew about me, and my illness, this is what they would think and say about me, too.” I thought to myself.

All those times I saw people talking to people and voices only they could see and hear, and I thought, “That could be me.”

All those times I heard jokes, saw movies, read books, and had no way to respond. All those times I kept my secret while I felt the burn of shame. All those times my husband and I had to hide our reality, and try to go on together after a psychotic episode, rebuilding our world alone.

For most of our marriage my husband and I lived in a bubble. We burst that bubble ourselves but the pressure and pain it caused is being released every day.

After nearly twenty years of having to shove my feelings somewhere deep inside, I can now respond to the stereotypes. I can respond to the language of dehumanization and all of the belittling of an illness that can be deadly and is nothing like the sensational beliefs most people hold. I can now point out when someone is being hurtful or furthering the stigma around schizophrenia.

After nearly two decades of being as tight as a pressure cooker with no way to release steam, I have a space. I have a place in this world, carved from my tears, where people can read about the injustice, the shame, the fear, and the pain.

I have a voice that is sometimes loud, sometimes soft, and sometimes crackly from lack of use. I have a voice and that means I am seen, recognized and validated in a world that often goes speeding by or where people spend time with their heads in their phones instead of looking each other in the eye.

I see that you see me, and that brings tears to my eyes.

Are There Limits To Your Advocacy?

17 Saturday Oct 2015

Posted by in mental illness, relationships, schizophrenia, stigma

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I don’t want the people at my husband’s office to know that I have schizophrenia. I know that some of them already know, because I have come out so publically about it, but if I had my way none of them would know.

The reason behind this is sad but simple, I don’t want people to look at my husband and think   “Why would you marry a woman with schizophrenia?”

I am no fool. I know what the majority of people think about having a mental illness, and particularly schizophrenia. I know from experience that even knowing me doesn’t change the lifetime of stereotypes built up in most people’s minds.

I have written so many articles about the language we use that is degrading to people with a mental illness and I have “friends” (and boy, do I use that term loosely), who seem to delight in using that language more than ever. I know that these people’s thoughts are small. The fact that they make personal attacks against me is actually immature and lame. I think it is because I am now a threat. I study. I read. I call people out on racism, sexism, mentalism, and any other forms of hate and bigotry when I see it. I call them out, because injustice and discrimination against even one group is too many and there is an intersection between all inequality and injustice. The intersection for me is that I am a woman who has a disability. The intersection for someone else might be that they are a person of color with a disability, or they are gay and a person of color.

In any case, I am calling people out. I know people don’t like to be called out. They don’t like to think that they are the ones who are displaying ignorance, discrimination, and hatred publically and openly. I get it. I have become the voice that many people don’t want to hear. I’m that uncomfortable person who lets people know their jokes are offensive and not funny. I get their resentment. I get their desire to live in their current way of thinking. Change isn’t easy – it comes with a price.

I can’t imagine how lonely it is for some people who have stood up in the past, or that continue to stand up. I haven’t found my people yet, those people who understand exactly what I mean and what I am fighting for, and why it is important not to stereotype, demonize, or dehumanize any group of people. I have a feeling I’m closer to discovering my crowd – people that will take the risks necessary to make people uncomfortable, and force change.

The truth is I think that I have guts and courage when it comes to a lot of things, but I am a ragdoll without bones when it comes to people judging my husband. He doesn’t care about other people’s judgement. He doesn’t care if they don’t understand the depth of true love that really does honor the vow – in sickness and in health.

I have to tell you though, he’s my weak spot where advocacy is concerned and I want to hide my illness to protect him. For that, I feel like my advocacy has limits and that I am a coward.

The Voices of the Mentally Ill

13 Wednesday May 2015

Posted by in bipolar, mental illness, schizophrenia, stigma

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I talk to the youngest of my brothers on the phone a couple of times a week.  We were talking yesterday, and while we were on the phone, he found three letters from me that totaled over thirty pages. I wrote the letters in 1993.

He started to read them to me, and I had to ask him to stop. I could not listen to the words of my younger self, it was too uncomfortable. I was passionate. I was opinionated. I was dramatic. I was philosophical. I had dreams.

In one of the letters I was critical of popular culture and especially what was passing as art on television. I ranted and raved about the sex and violence and how they were used to sell and put into shows gratuitously instead of as a part of the actual story.

I also criticized people for not caring enough about the environment, or other people, and in particular children.

Today, I live very much outside the habits of the mainstream, but I don’t write letters about it. I am not vocal about it.  I’m not trying to explain my causes to anyone. I make choices that I can live with that I think are environmentally sound, better for animals and the planet, and better for people we share the planet with.  I am not on a crusade. I am silently living my life in a way that makes it easier to look myself in the mirror.  I’m not waving a banner about it.

Not being able to listen to the words of my younger self without feeling more than mildly uncomfortable made me think of something that has been bothering me lately.

The loudest and most active voices for the mentally ill are young people who have been diagnosed less than five years.  I think it is great that young people want to get involved and change the dialogue and possibly the perception of an illness they suffer from.  Stigma is big. Stigma is a hindrance to acceptance and care.  Care is pitiful in many states.  Prison is not a place to house and treat the mentally ill and neither are the streets.  Changes need to be made, and I am all for the people who can make that happen.

On the one hand I applaud the efforts of the young, but I don’t want young people to take over and be THE VOICE of mental illness.  There needs to be some balance between the newly diagnosed (five years or less) and the veterans of the illness who have been living with their illness for two, three or four decades.  We need the voice of wisdom and experience to go along with passion and enthusiasm and high hopes and dreams.

I feel like the scales are tipped a little bit toward the young right now, because young people are so successful at getting heard and getting noticed and generating a following and a campaign on social media.  I hope that they will seek out those with years and years and years of experience to balance out their ideas though.

Those older voices remember big asylums that dotted the country side.  We remember when most of the people being treated there were released to the streets. We remember the politics and arguments for and against it. We are not too far removed from insulin shock therapy, lobotomies, and straightjackets.

When the young are fighting for something, the older people can say, we have traveled that road as a country before.  We can also look at what works in our own lives those things that make us the best and most functional neighbors, teachers, writers, professors, architects, football players, parents, and friends.

Those of us who are older have a wealth of successes and failures built up that only time can give.  We need a balance between the current voices and the experienced voices so that others may witness a story that is true, long lasting and the best for all.  It can be done. I believe it, because we have easy access to one another through tools like social media.  We actually have a better chance than ever of making it happen.  Let’s do it! GO!

Out of the Closet

19 Thursday Mar 2015

Posted by in articles I wrote, schizophrenia

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I have been silent about my diagnosis for over twenty years.  A few days ago, I came out publicly by posting the following article on Facebook and Twitter:

ewriterscoach.com/need-a-shot-in-the-arm-of-courage-to-finally-speak-your-truth-meet-rebecca/

People who have known me for thirty years or more, as well as, many relatives found out for the first time that I have schizophrenia.  Preparing to come out, proved to be harder than actually coming out.  People have been supportive and kind, but the information is new.  Will people treat me differently?  I am certain some will disappear quietly from my life, and others will look at me with a new filter.  I could say it doesn’t matter, but it really does.  I am watching very closely, and if it didn’t matter, I wouldn’t be watching at all.