Tag Archives: streets

A Possible Source of Anxiety

25 Friday May 2018

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

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In the city where I live in California, we voted to ban plastic bags. The plastic bags were ending up in the Pacific Ocean, in storm drains, and on the beach, threatening wildlife and causing damage to the environment. I have been concerned about the environment and lessening my footprint on it for over thirty years (my first husband was an environmental scientist) so, I was 100% behind banning the bags.

It turns out that banning plastic bags increased the cases of Hepatitis A in our city. How are the two related? People who live on the streets and in encampments were using the plastic bags as toilets and then disposing of them. When plastic bags were no longer readily available people started eliminating on the street and in places where people walk, sit, sleep and walk their dogs.

Fecal contamination spreads hepatitis, and the best way to prevent it is to wash your hands frequently. People on the streets don’t have access to hand washing stations (they do now). So, the lack of a proper way to dispose of waste combined with no accessible hand washing stations created an epidemic in our city. It wasn’t just the lack of plastic bags that created the health risk, but it contributed to it.

Unintended consequences.

The plastic bag example is a case of unintended consequences and most of our actions, words, etc. even if well-intentioned have unintended consequences. I once warned someone about the lies and manipulation of another person, and the person I warned turned around and told the other person causing me continued problems for over three years. My desire to protect the person I gave the information to turned into an opportunity for her and her husband to hurt me and my relationship with several people. This example might sound like a small example but the stress the situation caused contributed to me being psychotic for over six months.

Unintended consequences.

They happen in our lives every day, all around us. There is no way to foresee them or to avoid them without living a completely sheltered life. As long as you are talking to people, going out in public, etc. there will always be unintended consequences.

Unintended consequences.

This reality, these possibilities, this path that we can go down without ever intending to, these ripples we can cause that can go on for miles, over mountains and for years, can create anxiety in people. I know they can create anxiety in me. Even though I have had bad results with unintended consequences, I choose to keep moving forward, but if I am more cautious, slower to make a move, more guarded don’t be surprised.

Unintended consequences can occasionally make you sick and can cause you hesitate before moving forward in case the landscape in front of you is about to burn.

What is Advocacy?

12 Thursday Apr 2018

Posted by in mental illness, schizophrenia, stigma, Uncategorized

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Almost everyone I have come into contact with that has access to the internet and has a mental illness (with current research, I am not sure how much longer that label will be around) calls themselves an advocate. I frequently call myself an advocate as well but will do so less and less.

Calling yourself an advocate makes it appear to people, not that you have the experience of one person, but that you are an expert or authority on one of those illnesses. Most of the advocates that I have met don’t even bother to keep up with laws, trends, research, etc. that have to do with the illness where they are viewed or seen as an expert or authority.

I will give you an example of advocacy that I think harms the larger community of people living with a brain illness. The disability community has long preferred people first language to refer to people with an illness so, a person would say, I have diabetes, not, I am diabetic, or I have cancer, not I am cancer, or I have schizophrenia, not, I am schizophrenic. Using this word may seem like a small issue to someone who is an “advocate,” and they may decide they don’t care about that issue at all and scream from every platform they can find, “I am schizophrenic! I am schizophrenic! I am schizophrenic!”

It is great that they don’t think this is a big deal. But view it like vaccinations. Many of us don’t get vaccinations to prevent ourselves from getting an illness we get vaccinations to prevent giving the illness to someone who is far more vulnerable than us. It is the cost, the dues, the responsibility of living in a community. We take care of the most vulnerable among us.

I will say that for many people being called a schizophrenic is harmful. People who call other people that are making that the key source of their identity, not allowing them to first be, writer, teacher, fireman, lawyer, wife, husband, son, father, mother, sister, brother, etc. We all have so many identities that we would prefer to be known for rather than the one that is seen as broken, or ill.

I think it is a matter of privilege that people can say the word schizophrenic doesn’t bother them. It means that being dehumanized and identified as an illness has no bearing on their lives and their happiness and their success. I challenge the people who think this way. I think “advocates” who think this way are unwilling to admit that there is a huge divide in the mental health community.

There are those with the privilege of having clear enough thoughts and the means to write on the internet every day, and there are those, living in the streets, in prison, those at risk of being shot by police, and those without access to treatment. Those people can’t afford to be demeaned anymore than they already are. Seeing them as a brother, mother, father, sister, is critical to their survival and seeing them as someone who is schizophrenic is harmful because let’s face it, people still believe people with schizophrenia are less than, not quite human, and in some cases capable of monstrosities.

In my world, until all the mentally ill are cared for, and treated with dignity, then none of us are free to claim that some issues that demean others are of no harm. It is our responsibility to stand up, and if we are going to call ourselves advocates, let’s get to it – people are dying.

The Value of Human Beings

18 Thursday Jan 2018

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

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I haven’t been able to write about this topic until now. I am so upset and disturbed by our lack of concern for the mentally ill that it almost makes me physically ill. I don’t think people without severe mental illness can know what it is like to realize that the majority of society thinks less of you than they do of a dog or a cat. If you think I am exaggerating, follow along for a moment.

During the latest storms on the East Coast, a meme was going around social media. The meme had these words on it, “Why is it you can get arrested for leaving a dog out in this weather but  ok for homeless people to sleep in it.”  Obviously, there are a few errors in this, but it is the sentiment I am after and not the grammar. On one person’s Facebook page underneath the meme, a commenter wrote: “…But to answer the question, someone has taken on being a responsible pet owner, and that pet is 100% dependent on that owner and does not have free will, so that is why.”

The fact that there was even a response that someone thought sounded reasonable tells us everything about how they feel about homeless people. I don’t know anyone who is an addict or has schizophrenia and is psychotic that is acting in a way we could describe as “free will.” I can’t  even dissect this answer because the fact that someone tried to justify caring more for pets than homeless people makes me simultaneously weep, nauseous and angry to the point that I can feel my blood pressure going up.

I grew up with cats and dogs. In my twenties and almost to my thirties I had either a cat or two dogs. I am currently a pescetarian, so the only meat I eat is fish (poor fish) and most of my adult life I have gone on again off again with being a vegetarian. No one can say that I don’t care about the plight of animals. I do, but I don’t care more about animals than I do about people.

There have been two times that people have threatened to beat me up, and both times it had to do with asking (asking, not yelling, not screaming) them to please put their dogs on a leash. I am terrified of other people’s dogs, and I won’t go near a dog off leash. (My dad was attacked by a pit bull while walking into a store. The dog jumped out the car window and took a bite out of my dad’s stomach. It took several people to get the dog off of him.)

When I say that two adult men have threatened to beat me for asking them to put their dogs on a leash, I am not joking – they chased me, screamed at me, and one tried to get his Rottweiler to attack me. They both told me if they caught me I would be more afraid of them than of their dogs.

Where I live in Southern California pet owners are some of the most difficult people (and dangerous) I encounter on a regular basis. There are laws against having dogs in places serving or selling food (the exception is for service animals). To get around this, most pet owners claim that their dogs are service dogs. I have no issue with real service dogs. I think they are great, but I also know that real service animals’ training is so extensive that it is almost impossible to know they are around.

So, every time I go to the grocery store or to a restaurant I have to share the space with dogs. There are over ten thousand homeless people in the county I live in, and most places of business don’t want “those people” anywhere near their storefronts, but they welcome animals.

They welcome animals. Just let that sit with you for a minute and sink in.

Stigma, it Gets in Our Hearts and in Our Heads

17 Wednesday Jan 2018

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

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The worst thing I have seen when it comes to the treatment of the mentally ill was the video of the Fullerton police beating Kelly Thomas on July 10, 2011. I am not going to post the video here. It is so violent and so disturbing it could cause some people emotional distress to watch it. Kelly had schizophrenia, and the beating resulted in his death.

Last week we had the video (again, I’m not going to post it although it is not violent, but upsetting) of the woman with bipolar disorder left outside of a Baltimore hospital with a hospital gown on in freezing weather. Articles came out discussing the lack of humanity in healthcare.

But who is it that the police and the healthcare system get caught on camera mistreating? The majority of the time, it is someone with a mental illness. Why is it so hard to see our humanity? Why once again are we reading about hospitals “dumping” the mentally ill off at bus stations with a one-way ticket? When those people “dumped” get to their destination, they have no contacts, no family, no way to get the medication and treatment they need. If I were in that situation, I would be as vulnerable as a lost child in an unknown city. Why can’t people say to themselves, “what if this were my mom, aunt, dad, uncle, cousin, sister, brother?”

Why is it so hard for some people to feel compassion and empathy for the mentally ill?

I recently read a study put out in 2008 by the Canadian Medical Association that found that one in four Canadians are fearful of being around someone with a serious mental illness. I saw another study (Canadian) circulating on Facebook (I can’t find it now, so I won’t be able to quote it exactly) that claimed a high percentage of people wouldn’t be friends with someone with a severe mental illness.

I have to ask myself what is serious and what is severe? I frequently read from parents who have a child with schizophrenia that it is “every parent’s nightmare.” I also frequently read that it is the most “dreaded diagnosis.”

How am I supposed to keep my head up or fight the urge to isolate or my lack of motivation (both symptoms of schizophrenia) if people aren’t going to see me as a valuable member of society or as their friend, or even as a fellow human with wants, dreams, desires, etc.?

Sure, you can tell me, it is getting better, those studies were conducted a decade ago, but is it? If those needing treatment the most are “dumped” at bus stations so that they can become “someone else’s problem.” Is that better?

I know, you can tell me, “You are different, Rebecca. You are married. You have a family. You have friends.” But it is precisely those things that I have (a support network) that keep me from being issued one of those bus tickets.

I never want to be a passenger on a bus to a city I don’t know. I never want to be in that bus seat as that passenger, but in a way, I travel with all of those victims because it is our diagnosis that others are responding to and I have that “dreaded diagnosis,” too.

Stigma, it gets in our hearts and in our heads.

More Than One Side of Schizophrenia

10 Wednesday Jan 2018

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

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I need to work harder. I wish that my blog and the articles I wrote for Teen Vogue, Good Housekeeping, Dr. Oz, Yahoo News, Ravishly, The Fix, Headspace, and even the fashion magazine, Byrdie, would go viral. Last night I got the feeling that people don’t assume it is possible that a person with schizophrenia could wake up in the morning, grab their coffee and sit down to an issue of the Washington Post, New York Times or Boston Globe. I’m here to say it is possible, and it is happening in more homes than just mine (although my subscriptions are not paper, but electronic).

Yesterday, I was furious, exhausted, and felt completely beaten by an article in the Washington Post. Of course, the article was about schizophrenia, and the first sentence pulled out of the article is, “Her “perfect child” was now schizophrenic and homeless.” It is hard for me to imagine that a staff writer at a paper as big and prestigious as the Washington Post, can’t even bother to try and use disability friendly language. I know not everyone who has schizophrenia is opposed to this language, but the majority of advocates, academics, and mental health professionals no longer refer to people as schizophrenic – something a writer at a major paper should be aware of if he is going to write stories about people in our community.

And of course, it is a story that we have all seen time and time again: A parent’s perspective. Homelessness. My once golden child is now defective. Do you know how hard this story is to read? I admit that homelessness is a shameful problem in this country (it is the cause I give the most time, effort and money toward), and yes, I think we should have way more psychiatric facilities for people who are medication resistant, or chronically psychotic, or even to get temporary treatment. And I even believe that there needs to be some change in the laws about getting someone treatment who may not be deemed a danger to themselves or others but is clearly at risk, but even with all that, the article hit me as stereotypical and highly stigmatizing.

Our mental health system is in shambles, but another story about how a person with schizophrenia is causing his or her family distress because they won’t take their medication, and have disappeared into the shadows and unknown territory of our urban streets does not help those of us who have the illness. And does another story about homelessness and mental health push people into action? I don’t think so. A story about how a fourth of the people living on the street are mentally ill doesn’t get people to act. If it did, things would be different by now, because this story is worn out, told again and again.

Why not tell the story of people who have received help and gotten off the streets? Doesn’t a story like that help us to realize that we need to do something different? Doesn’t a success story let people know that we are not (like many people believe) throw away humans without hope or value, but people who have an illness that is possible to manage and with treatment and care recovery is at least a possibility?

To be truthful, I don’t know the story to tell to get people to wake up to the plight of the most vulnerable members of our society. I don’t know which stories would get people to vote for representatives who make the treatment of the mentally ill a priority. I’m not sure that any story can get people to act. If seeing the faces of people, both women, men, and children living without shelter, in squalor, and having many of them be out of touch with reality, isn’t enough to change laws, hearts, and minds, then maybe stories aren’t enough. Especially the stories we have been telling. We have to find a new way to talk and write about the struggles of severe mental illness and what it does to a person, a family, a community.

I don’t have the answers, but I hope I can dig deep into my creativity and one day tell a story that gets people to see the whole picture of schizophrenia and those who have it. I’ve been a person who refused treatment. I have been that person who left the comfort of their home. I believe there is hope for every single person with this illness. I believe that a person living on the streets today, could one day be a person reading a major paper while they drink their morning coffee –if I didn’t believe that, I doubt that article would have made an impact on me.

Luck can be the Difference Between Homelessness and Help

31 Sunday Dec 2017

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

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Yesterday, my husband and I went to Starbucks. A young woman was sitting at the corner table writing in a notebook. I recognized her from a few months ago when the two of us sat at the same table, and we both shared that we have schizophrenia. Next to her, was a woman who was talking to her loudly. The woman talking looked like she was probably homeless. Her hair was matted, and her skin was dirty. I assumed, although I can’t be positive, that the homeless woman also has a mental illness.

In that small Starbucks that seats about eight people, there were three women with a mental illness (possibly schizophrenia). It was surprising that we were all in the coffee shop at the same time, but what struck me was how sad, eye-opening and heartbreaking the situation was. Neither the young woman writing in her notebook or I wanted to talk to the other woman.

My symptoms weren’t showing yesterday. I looked like an average middle-aged woman having a coffee with her husband (spouse, friend, boss, or whoever people assumed my husband was). The young woman writing looked like someone who was working hard, and busy with her own life and in her world. She wasn’t showing symptoms either. The homeless woman, on the other hand, was showing symptoms of a brain in overdrive – she was talking loudly, she was laughing nervously, and she was trying to engage strangers in conversation. The young woman, politely told her that she was enjoying her music and didn’t feel like talking at the time (she said it a little kinder than I just wrote, but the message was clear).

When the young woman tuned out to the music piped into her ears through earbuds, the homeless woman turned in the direction of my husband and I. I looked away so our eyes wouldn’t meet.

Normally, I will talk to anyone who wants to talk to me, homeless, mentally ill, etc. but there are times when I can’t bear the enormous weight I feel about mentally ill people living on the street. I know the kindest thing I can do is look them in the eye, listen to their story and treat them like a significant and valuable human being. Yesterday, I couldn’t do it though.

After just getting through the holiday season, after just talking with my husband about our hopes and dreams for 2018, I couldn’t carry the burden of our cruel and inadequate mental health system that leaves thousands upon thousands of men and women without care or shelter.

My husband and I give our time and money to an organization that feeds, delivers medical and dental care, provides social and legal services, and assists in securing housing for the homeless. In other words, we are trying to do something to alleviate the suffering of some of the people without adequate care, shelter or services. Of course, we also write to our representatives and vote in every election. And yet, the problem is massive, and the human toll is high. Things don’t seem to be getting better.

And I couldn’t look a fellow human being in the eye yesterday. A human being, who I believe suffers from the same brain disease I do. A human being who isn’t as lucky as I am. She has no protection, no treatment team; she may not have access to medication, she has no shelter, no shower, she may not know where her next meal is coming from, she may not have a change of clothes. And all she was asking for was attention that no one wanted to give.

Next time, no matter how difficult, heavy, how much it weighs down my heart, I am going to look at that homeless woman, and offer to buy her a hot coffee. I know one step left or one step right and I could be in the same shoes she is wearing just looking for some validation that I am still human.

I’m sorry that I’m not always strong enough to hold the enormity of mental illness, but next time, I’m going to heave the baggage off my shoulders and pull up a seat and have a long conversation.

I want to treat everyone as significant. We all deserve that and so much more. Much much more.

 

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.

I want you to meet Brian. Please tell him, Hello

04 Saturday Jul 2015

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

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Yesterday afternoon my husband and I were sitting around the house when I said, “Let’s go up to Starbucks to get out of the house.”

We walked up to Starbucks and while I ordered us an Arnold Palmer (black tea and lemonade) my husband found us a table. I saw that he had chosen one of the few empty tables next to a homeless man. I waited for our drink and then joined him.

I took out an essay I was trying to revise and said, “This is hard for me to rework. I understood immediately what the editor wants, but actually editing this and making it better is tough.”

The homeless man sitting in the corner said, “Are you a writer?”

“Yes.” I answered him.

“How many books do you have?”

“I have one book that I wrote by myself, and my husband and I published an anthology of fifteen poets. So, I guess I kind of have two books.”

“I am a writer too.” He said.

“What do you write?” He asked me.

I had often told people I write poetry and essays but I had never told them what the poetry and essays were about.  I made a guess about this man sitting near us, and decided to answer him honestly.

“I used to write poetry, but now I write essays about living with paranoid schizophrenia.”

“I was diagnosed with that too.” He said.

“What do you write?” I asked.

“My next book is going to be about the power of hello.”

My husband and I agreed that the power of hello was an excellent topic for a book. He told us his name, Brian.  He recited a poem he wrote in high school that he said was published. We talked about Frank Lloyd Wright, Hillary Clinton, Monty Python Movies, a British television show, and how he was going back to Michigan at the end of the month.

“How will you get to Michigan?” I asked.

“The city has this program. If you do some community service they will buy you a bus ticket to wherever you want to go.”

“Is someone in Michigan waiting for you?” I asked.

“My father, he is eighty-five.”

Brian said he had some really expensive Coach glasses.  He took them out of a bag and showed them to us.  They were pink and maroon. My husband and I told him they were nice. Brain said he thought they were worth a lot of money. Then he handed them to me and said, “Here, I want you to have these.”

I tried to refuse the glasses. I told him I didn’t have any money to give him for them. He said, “A gift is a gift. I don’t need any money.”

A gift is not just a gift when it is one of the few things you have.

I hope Brian writes that book about the power of hello.  I know his experience on the streets has taught him that most people won’t even look you in the eye. I also hope he takes that bus to Michigan, and receives the care and treatment he needs.

I’ll keep the glasses. I’ll fix them up with my prescription. I’ll wear them as a reminder of Brian, our shared illness, and I’ll try never to forget the power of hello.

Untreated Mental Illness: When the Switch goes off.

30 Tuesday Jun 2015

Posted by in mental illness, writing

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For several years there was a man who stood on the busiest street in my neighborhood during the morning and evening commute. He would stand at the side of the road for a couple of hours, twice a day, and salute all the cars that drove by.  After his self-imposed shift he would sit on a cement planter in front of an architecture office for most of the day.

My husband and I would always wave at him when we drove by while he was saluting.

When I started a job in the neighborhood, I walked by him several times a day. I would always say hi. One day I bought him a Starbucks card, and asked him his name. He said it was, Buddy.

I started to talk to him every week day. I asked him if there was anything he needed. He requested peanut butter (but not Trader Joe’s peanut butter because it needs to be refrigerated). I bought him peanut butter.

There were days when I would sit and talk to him for a while. On one occasion he told me, “I don’t know about you sitting here. The cops don’t mind one person, but when there are two, they come and throw you down on the street. They don’t like groups.” I told him I was sorry, and I walked home.

Most week days, I would ask him if there was anything he needed, and he would tell me when he was out of peanut butter. Once he asked for a pair of long johns. Once a week I would buy him a Starbucks card. I found out he would transfer the money from the card I gave him to another card and the woman at Starbucks told me he had over three hundred dollars on his main card. I guessed that other people also gave him Starbucks cards.

He told me that he went to Starbucks every morning for his coffee. The employees there knew him and several of them said he liked them, and one woman said, “I don’t know what it is. He won’t let me serve him. I can’t figure out what I did to him, but he doesn’t like me at all. He won’t even look at me.”

Buddy and I talked and I learned that his parents were dead, and that he didn’t like going to the soup kitchens or shelters, because the thought the people there were really rude. He also told me that there were two opinions on the street about eating cheese. One group thought it made you have to go to the bathroom, and the other group thought it helped keep you from having to go to the bathroom. Buddy refused to eat cheese.

One morning, when my husband and I both had the day off, we saw Buddy at Starbucks. Before we could say hi to him there was a commotion at the counter, and Buddy said a few words in a loud voice and slammed out. My husband and I followed him, and we both said, “Hey Buddy, are you okay?” He gave us a mean and hurt look, picked up all his bags off the street and tried to get away from us as quickly as possible.

I can’t remember what else my husband and I said to Buddy that day, but I know he acted hostile towards us and wanted nothing to do with us.

We tried stopping by the planter in front of the architecture office to talk to him but he became hostile and waved us away.

From that day on, I walked on the opposite side of the street. At first I would call out, “Hi Buddy!” and wave to him, but he would ignore me.

Something switched in his mind that day at Starbucks and my husband and I became a part of the problem in his life, a problem that kept him from treatment and sentenced him to life on the streets.

Buddy now spends his days sitting a few blocks away from the architecture office. He no longer salutes traffic and he doesn’t go to Starbucks. I haven’t bought him peanut butter in over two years.