Tag Archives: community

Bridging the Divide

14 Thursday Jun 2018

Posted by in caregivers, hope, mental illness, relationships, Uncategorized

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The past two years have been surreal. I feel like reality is fluid. Reality used to be full of hard facts, things we could easily prove. Now, people we are supposed to trust throw conspiracy theories and “alternative facts” around regularly. Our country is changing at such a dizzying speed, and much of it is shocking, and some of it is alarming. One thing is for sure, as a group, as citizens, as a nation we are divided, and those divisions are causing people to feel hostile and angry. It is as though everyone is on the verge of snapping.
I discovered something, possibly one of the few things I can do to bring generosity, kindness, concern, love, goodness, friendliness, and all the positive things we can feel between two people back and that is to go small. I thought about it during breakfast this morning.
My husband and I had breakfast at a local hotel.  When we arrived, the whole room was loud, and every table was full. People were cutting in the buffet line, talking on video conferencing, having to raise their voices to hear their table mates. We learned from our server that ninety people eating in the restaurant were a part of a tour group. The people on tour were on a time limit, so it is easy to understand why they were in a hurry, not waiting in line, etc. but the impact this had on the servers as this person and that person asked for water, or coffee was noticeable.
Every time our server went by, we asked if she was okay. We told her it looked very stressful. We thanked her for everything she brought us and said we hoped her day started to look up. It was evident that our concern for her was going a long way because she made sure to come back to our table frequently to ask if we needed anything, or wanted anything.
My husband and I said working at a buffet when a large group comes in must be very hard. We didn’t see a single person tip their servers. We know from being on tours that the head of the tour should leave a big tip for all the servers to share, but there is no guarantee that that is the custom everywhere.
We decided to leave our server a larger than usual (about double) tip to make up for all the running around she had to do and for putting up with chaos with a smile on her face. When she received our tip, she was so grateful.
As we walked along the waterfront after our breakfast, I told my husband that the only thing I can think of to help out people right now is to go small – make every interaction, every conversation, every greeting, every time I talk or see another person an opportunity to show love and kindness. The only hope I see for rebuilding our relationships and communities and crossing this vast angry divide is to go small and take it one person at a time.

I know we can be the friendly and generous people we have a reputation of being if we heal each other one interaction at a time.
I’m going small, and hoping others will join me and that it can make all the difference.

Can You Do More To Be Happy?

04 Thursday Feb 2016

Posted by in mental illness, Uncategorized, writing

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Last night I watched the documentary, Happy.

I wish that everyone was required to watch it. It is all about the science of happiness. There is a country (Bhutan) where the government is more concerned with Gross National Happiness than Gross National Product. I wish Americans felt our citizen’s happiness was more important than money.

People in Denmark top the world in happiness and most cities in Japan top the world for unhappiness.

The scientists doing the research said that 50 percent of happiness is genetic, so there isn’t much we can do about that, but a whopping 40 percent of our happiness can be altered by how we act, what we think, and what we do. That is a substantial amount that we have control over.

What do they suggest we do to increase our happiness?

  1. Be social. Everyone that scored high in happiness had a network of family and friends.
  2. Think of something bigger than you. You don’t have to be religious to think of, or participate in, activities that benefit the greater good. You can volunteer at a place that provides hospice care or a shelter for the homeless, or any activity that helps your community and other people.
  3. Exercise. People that are the happiest move their bodies.
  4. Do activities that you love. The researchers talked about “flow.” That place where people go when they are in the “zone” and are experiencing something like being at one with the activity they are doing. The more you can create “flow” in your life, the happier you will be. People can experience “flow” in their jobs. In the film, they interviewed a chef who loves cooking so much that he is experiencing “flow” while he works each day. In my life, I think I experience “flow” at times when I am writing. Other people experience it while gardening, playing music, dancing, etc.
  5. Try to change your routine. Even minor changes in your daily routine, like walking to work a different way, increase your happiness. Our brains respond well to variety.

 

There was one other way to significantly increase happiness that I found controversial because the researchers said meditating on compassion and loving kindness proved to be as effective as antidepressants over a certain length of time. I would never recommend someone going off their medication to exchange that for meditation, but it seems like if the findings were that significant, it is worth a try to read up on meditating about compassion and loving kindness and possibly start a practice of meditation.

The documentary didn’t address mental illness. They did mention depression a couple of times, but they didn’t qualify that with any science. I didn’t know if they were talking about clinical depression or bipolar depression. Were they talking about situational depression? I’m not sure the severity of the depression they were referencing.

But, if for most people, 40 percent of our happiness can be influenced by our thoughts, actions, etc. then I want to focus on some of the things they mentioned. I think I am fairly happy, but who couldn’t use more good feelings in their life?  I plan to take steps to be happier this year – a goal that if reached, will spread to all those around me.

I Hear You, But I Can’t Keep Up With The Disabled Community

23 Wednesday Dec 2015

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

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I don’t think of myself as the most educated and updated person when it comes to all the issues regarding feminism, racism, transgender, disability, LGBT, etc. I care about all of these issues, and I particularly care about equality, but it is hard to keep up with the latest concerns, language, etc. inside each of these movements (and I realize that many of these issues intersect with one another).

There has been a controversy in the disability community about a site I write for called, The Mighty. The Mighty is being called out for not hearing the voices of the disabled, and instead posting mostly articles by caregivers with an ablest perspective, or a mommy martyr perspective, or exploiting the vulnerabilities of people who can’t speak for themselves (don’t worry if you have never heard these terms before. I read most of them for the first time yesterday, and I felt like I had been living in a hole in terms of the disability community because everyone else was using them frequently).

And my last sentence in brackets is what has me being thoughtful today. It is true, I don’t know everything going on in the disability community, and I should, or at least I should know more. How can I claim to be an activist and an advocate if I don’t read, read, and read some more about what is happening to the very community I am a part of?  I can’t.

Besides the issues I listed before, writers with disabilities are claiming that The Mighty publishes mostly “inspo porn” (inspirational porn). People are speaking out against this because they say it simply exists to make abled or neurotypical (for information regarding the neurodiversity movement click here) people feel good about themselves, and another way to exploit people with disabilities (the idea is, we don’t exist to be other people’s inspiration).

Okay, I am beginning to deepen my understanding here. I wonder though, where does my voice belong? I am someone who has a disability, and my particular disability is supposed to be one of the most severe in terms of mental illness. I want to write things that give people with schizophrenia hope. I want to write stuff that is inspirational. My whole goal in keeping this blog is to help people see people with schizophrenia as their neighbor, or their friend, or their hairstylist, lawyer, etc.

I have a diagnosis that is often portrayed as someone who is a mass murder in the media. Rock bands use people in straitjackets and asylums to sell albums. It is common (like daily) to hear language that is insulting to the mentally ill. These are big issues to overcome, and my main goal is to get out a new message about schizophrenia, and to report the alarming statistics and conditions many people with schizophrenia live with. I don’t know if with all of that, I can also worry about trying not to be someone else’s good feeling or inspiration. I am afraid that I might be a disappointment to the disability community as a whole, and it won’t be intentional, it will just be that I feel like schizophrenia is so far behind the train of acceptance, equality, lack of stigma, etc. that we don’t even see the smoke from the engine. Until we can see that smoke, I simply can’t take on every issue in the community.

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.

The Battle That is Mental Illness

11 Friday Sep 2015

Posted by in mental illness, relationships, schizophrenia

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Everything is going well. We are all laughing, joking, sharing appetizers, and telling stories. And then something turns and my mind leaps and twists, and I can no longer join in the celebration. Such is the reality of living with a severe mental illness. There is no clock telling you, “You will be fine for the hours between ten and two, you will become paranoid at three and you will have a panic attack at five.” It simply doesn’t work that way. Yes, at times there are clues and triggers, but not always. And even when there are triggers, like too much stress or over stimulation, you can’t always avoid it, unless you want to stop living all together, and just give up. For me, that is not an option.

Because some people have limited interactions with me (they only see me a few times a month, or even less, some people only see me a few times a year), but interact with me daily on social media, it can be easy to forget that I have a mental illness.

I am both thankful and frustrated that people forget that I have schizophrenia. I am thankful because I am treated like everyone else, but at the same time, I am frustrated because when symptoms do show up, people can have little tolerance for me, and my “special needs.”  People often expect more from me than I am capable of doing, handling, or giving. I can’t for instance, always meet someone for coffee even if I say I will. I may wake up that morning to intense anxiety or symptoms of paranoia making it impossible for me to even attempt a social engagement. Someone may buy me a meal, but because of paranoia, I can’t eat it. I may need to go somewhere and lie down for an hour unexpectedly.

So often when you are mentally ill you feel isolated and alone (because of thought disturbances) but the truth is mental illness isn’t a solo disease. It impacts friends, family and at times, the community.

There needs to be tolerance and acceptance that go both ways. The mentally ill person needs to accept that their illness has an impact on others, and friends and family need to accept that symptoms can’t be scheduled for the most convenient time.

It’s a battle this illness, but unlike cancer you know you’ll never hear, “You are schizophrenia free!” This is a battle that is waged over the course of a lifetime, and it is important to understand and support every member of your battalion so no one is left behind and there are no casualties.

Self Centered and Angry

25 Tuesday Aug 2015

Posted by in bipolar, mental illness, schizophrenia, writing

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The mental health community is actually quite small. I see the same names turn up over and over again on various mental health websites. In my estimation there are less than one hundred popular authors and bloggers who seem to be all over the place. Then there are ten thousand or more people who follow these popular writers and each other.

I like to read what other people who have been diagnosed with a mental illness are saying. And I noticed a few things; many of the authors and bloggers are much younger than me – some are in their twenties and many are in their early thirties. I will be fifty next month.

I believe all of these writers have important things to say and that each one can contribute to the conversation about mental illness in a beneficial way. I have noticed a difference between most of them and me though, and that is many of them are far more negative and angry than I am. They also tend to focus the details of their writing solely on themselves and not look at the bigger picture of institutions, prisons, community care, involuntary treatments, etc.

I don’t know why these younger representatives for mental illness seem so angry. I’m not angry that I have paranoid schizophrenia. I don’t want anyone to feel sorry for me, or to look at my life stories, and say, “You are amazing.” I’m not amazing. I am living the best life I can live with a mental illness, and I believe most people with a mental illness are striving to do the same thing. What good does it do to complain, to look for sympathy, to be angry (unless that anger pushes you to act by writing letters, calling senators, and representatives, corporations and anyone else who has the power to change the treatment of the mentally ill)?

I think a certain amount of acceptance, grace and gratefulness comes when you have lived with a mental illness for over two decades, and survived. By the time you are fifty you realize that terrible things can happen to you – psychosis, living in the street, living in a state hospital, losing everything, going to prison, being denied treatment.  If those things are not currently happening to you, then you can feel grateful in a way that is both heartbreaking and a huge relief. When I think of mental illness, I think of how much worse my situation could be, and how I want to change the worst conditions for the people who are experiencing them.

I’ve noticed these younger writers have an edge to them – they have no problem using slang and swear words, and they are frequently dissatisfied with one thing or another. I have read many excellent writers among this group, and I know they have the potential to contribute thousands of articles and essays over the life of their careers. I can only hope they will look deep inside and see their ties to the less fortunate and turn their personal anger into anger for the benefit of others.

There are times when I feel I have more in common with people in the streets shouting at voices only they can hear than people sitting behind a computer typing how tough it is at the doctor’s office, at the hospital, or at the grocery store. If you ever get the feeling I am trying to convince you that my life is “just too hard.” Please tell me to take a walk downtown and see the people sleeping on the streets or to open a newspaper and read the headlines.

I’m not amazing. I’m lucky, and at fifty, I want to use that luck to change the world for others who have never had luck or had luck and lost it.

I can’t hold thanksgiving and anger in my heart at the same time.

My Changing role as an Advocate

12 Wednesday Aug 2015

Posted by in mental illness, schizophrenia, writing

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I know that my experiences with schizophrenia are not the same as any other person with the disease. Some people have fewer symptoms than me, and some people have far more. Some people have recovered completely, and other people experience hallucinations, delusions and voices every single day.  I respond well to medications, and other people don’t respond at all.

It is not a one size fits all brain disorder. That is why I struggle with my role in the mental health community.

My goal as an advocate has changed over the years, and continues to change and develop. When I was first diagnosed with bipolar disorder in my twenties, I read everything I could about the illness and I saw every action, reaction, and detail of my life through the lens of mental illness. I see many people who do this on their blogs every day – they believe every emotion they have, and every action they take, has to do with the fact that they are mentally ill. This isn’t true.

I have a personality and experiences that dictate how I will respond to many things, and much of what I do during the day has more to do with my life experiences and my personality than it does with the fact that I have schizophrenia.

Over time, I have been able to see which thoughts, behaviors, and emotions have to do with my illness. I can tell when I am paranoid and I know that is a symptom of schizophrenia. I know the fact that I rarely leave my house is also a symptom (one that has gotten far worse with age) of my illness and not my personality. When I am at a writer’s conference and I start to panic, and the panic gets increasingly uncomfortable and urgent, I know this is a symptom of my mental illness. I know if I get irritated at my husband that schizophrenia is not to blame for my irritation – it is me, Rebecca, a woman like any other woman reacting to life events and her relationship in a way that is common for everyone.

I used to think I wanted to tell my story over and over again. I used to think I wanted to be a public speaker and mental health writer in order to educate as many people as I could about the truth of schizophrenia. I had big hopes and dreams. I have written my story many times for mental health magazines, and I have written a short book about my experiences. I have also been faithful in keeping up this blog.

After seeing what others are doing, and participating in the mental health community, what do I want now?

I want to grow my readership for my blog and I want that to be one side of the contribution I play in mental health advocacy, but I have decided to focus the rest of my writing on telling other stories, writing essays about other things, and getting published in mainstream literary magazines and not only ones that focus on mental health.

Why do I want to be published in mainstream literary magazines? Because I honestly believe the the other side of my contribution as an advocate for people with schizophrenia is to work my hardest to be as successful as possible. Not successful in mental health circle per se, but successful in the circles that writers without a mental illness are in.

The best I can do for me and for all of those who suffer from schizophrenia is to be a success. And how do I want that success to be judged? Not as someone who has schizophrenia, but in the same way any other writer would be judged – by the quality of their work.

When people refer to me as a writer, and not as a writer who has schizophrenia, I know I will have done my best to overcome stereotypes, stigma, and limits.

So, what is the best gift I can give to all those who suffer from schizophrenia? It is to compete and succeed in a world that demands creativity, intelligence, discipline, and lots and lots of rejection.

I’m changing my view of advocacy. I want to give hope to those who are battling voices and delusions by being someone they can look to and say, “If she can do it, I can do it too.”

And I’ll be rooting for you, and for me, and for all of us. I’ll be here, as always, and I hope you’ll stick around and give me a holler every once in a while. Your support can be the difference between sending out another essay and crying in my coffee over the last rejection.

This writer needs a community to be successful, and you are my community. We are in this together. Let’s get busy.

Being poor Doesn’t Necessarily mean Worse Mental Health

10 Monday Aug 2015

Posted by in mental illness, relationships, schizophrenia, writing

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Yesterday afternoon my husband and I watched the documentary: Living on one Dollar. I was so moved by the film, I cried almost the whole way through it. The film is about a group of four college students who go to a very poor village in Guatemala and try to live on one dollar a day.  They set up guidelines on how they will do this to best duplicate how the local people do it. For example, every day they pull a number between zero and nine out of a container and that is how much money they have for that day – this was supposed to replicate the villager’s day labor jobs that were not guaranteed and for which they never knew how much they would be paid.

What captured my heart about the film was there was often not enough for children to eat, and the villager’s explained that when children don’t eat enough they don’t grow. There was rarely enough money for emergencies in fact one family had to borrow the money from another family in order to save the mother of the family’s life – there simply wasn’t enough money to get her to a doctor or to pay for the medicine she needed.

One woman, Rosa, said she dreamed of becoming a nurse but had to drop out of school after sixth grade because her family couldn’t afford both food and education. This is a common scenario.

The people were so fun loving, and generous though. They shared in their community and they shared with the film makers. They were amazing in their ability to have so little but give so much.

The fact is, there are over one billion people living on our planet that live on somewhere close to a dollar a day. That kind of life constantly holds with it the reality of survival. (I understand that we have poor people in the United States, I understand that people struggle to make ends meet, and often can’t afford medical treatment or something else that they need, but the level of poverty shown in the film is not something often witnessed in the United States, because we have some safety nets for people like welfare, food stamps, Medicare, social security, disability, food banks, soup kitchens and charities – I understand these are not enough, but they help).

While watching the film, I started to think about mental health, and how it was treated in these villages. Do they have anxiety disorders in the poor villages of Guatemala? Do they have  ADHD? Do people suffer from depression at the same rate as we do here? This made me think about an article I read recently that people in developing countries recover at higher rates from Schizophrenia than people in the West.  

The study suggests this is from the large amount of stigma here and the better family support in other countries.

Have we, with our fierce love of independence, our desire to move away from our families, and no longer live in the same house and community as our extended family (our built in support network) made our lives better or worse?

For people with a severe mental illness, the studies seem to suggest their lives are more difficult and recovery less likely without this support.

Now, with our noses buried in our phones and our constant desire to communicate via social media we may be slipping further and further apart, making the healing support and connections that all ill people need, less and less likely.

I felt deeply for the people of Guatemala for their hard lives and their severe poverty, but they had something I envied that was just as distant to me as their hardship, and that is community, and family, and belonging.

I have never thought the richest people knew the best way to live. I have always wondered about the quality of their mental health and relationships.

I can buy a shirt that has some of Rosa’s weaving on it, and it will help her with her fund to go to nursing school. I can help her with that, that is easy for me, but do you think she can help me in return to live a simpler, less complicated, less technological life, one that puts people and their needs and their wants, and their stories, and their healing first? A life that rebuilds community, networks, and connections.

Rosa, I’m not sure if we need you, or you need us more. I’m guessing we need you. Teach us.