Tag Archives: schizophrenia

My Sixth Year Anniversary

16 Wednesday Sep 2020

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Yesterday, I received a notice from WordPress that I started my blog six years ago. That means that I came out publicly with my diagnosis six years ago and started to write about living with schizophrenia.

A lot has changed in six years. When I first started my blog, I was one of only a few dozen people writing about schizophrenia. Now, I see YouTube channels, new non-profits (created by people with schizophrenia), and many Instagram accounts that deal specifically with the illness.

The whole landscape has changed, and I have to say I think this is good news. More people talking about schizophrenia and writing about it and being open about symptoms and what life is like can only have a positive impact on those of us who struggle to live our best life. I hope that increased awareness also impacts treatment for those on the street and in prisons.

To have those who are sheltered and work diligently with therapists, psychiatrists, support networks, and have access to medication, write about our lives helps reduce stigma and stereotypes, but does that translate into a better life for the most vulnerable among us?

It seems that even Hollywood might be taking notice that many people can have dreams, relationships, and get an education, or work while living with a brain illness. The new movie Words on Bathroom Walls is an example of that.

Although we have made incredible progress, I continue to hear stories from those caring for a loved one with schizophrenia that getting treatment is still hard to manage. Law enforcement continues to be first responders during a mental health challenge or crisis.

I’m grateful beyond belief that after six years, more opportunities continue to open up for me, but that doesn’t mean that I think the mental health landscape is beneficial to all those who desperately need treatment.  

As those of us who have support, treatment teams, and can manage to write or talk about our illness (when asymptomatic), I ask for you not to forget those who are in jails and prisons across the country. Prisons are still considered the most extensive mental health facilities in the United States. I also ask you to remember those without shelter who are struggling alone and possibly far away from people who care about them and might be willing to help them if only they knew their location.

It’s great that so many of us can give hope to the recently diagnosed and parents of children who receive the diagnosis and change the old boxes that society had us in. On the day after my blog’s birthday and a life I never imagined I be living (out in the open), I have one request: That all advocates work for a better life not only for those with the most but for those with the very least.

Happy Birthday, A Journey with You: Surviving Schizophrenia.

Twenty Years With A Mental Illness: Have Things Changed?

20 Sunday Dec 2015

Posted by in hope, mental illness, schizophrenia, writing

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I was first diagnosed with a mental illness in the early 90’s. At first my diagnosis was depression, then bipolar disorder, and then schizoaffective disorder and eventually paranoid schizophrenia. I think my final diagnosis was given to me in 2006 or 2007. But I have been living with a mental illness for over 20 years.

I’m an old timer. I’m old school. I’ve seen a thing or two and I am happy to report progress. There are certain aspects of being mentally ill that I would give an A to right now, and others I would give an F.

I know I frequently write about discrimination, stigma, need for more treatment (especially accessible treatment), homelessness, and the mentally ill in prison. All of the things I just listed are real, and they are very pressing and important issues, and I would give most of these areas a D or F if I were grading them.

I said I would give an A to some progress we have made about mental illness though, and that A would go to awareness. We have come so far in mental health awareness over the past 20 years.

When I was first diagnosed, there were therapy and group therapy and there was the organization NAMI. Those were really my only choices beyond my medication for talking about and learning about my mental illness. Now there are more organizations providing education and trying to raise awareness than I can count. There are new organizations springing up all the time and many of these organizations are set up around telling people stories about the lives of those living with a mental illness.

There are also huge sites like Psych Central, Psychology Today, and others, devoted to getting information out there about all the different mental illnesses.

There are online support groups. There is online therapy. There are more celebrities than ever coming out with their stories of addiction, bipolar disorder, anxiety and depression (I still don’t see too much about schizophrenia) and there are more movies, books and television shows being created with characters who are struggling with one or more of these illnesses.  And now there are blogs – thousands of online journals where people can read what it is like to have a mental illness from people who are actually living with one.

When I was first diagnosed, friends of mine who were doctors, told me not to tell anyone about my diagnosis. They thought people would judge me, and reject me. I only came out publicly with my diagnosis 9 months ago – the young psychiatrist that encouraged me to come out must have known the world had changed while I was in hiding. Well, I flung open the curtains and showed the world what it is like to have paranoid schizophrenia, and I have to admit, the world for the most part has been kind, compassionate, and accepting. I give us an A for progress in that area and although that’s not everything, I think it is something we can all celebrate.

I Don’t Know Everything About Schizophrenia, But Trust What Works For Me

19 Saturday Dec 2015

Posted by in mental illness, schizophrenia, Uncategorized

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I finished watching the series, River, on Netflix. After I had watched two episodes I wrote about it on Psych Central.  

Now that I have finished the series, I feel like, “Yeah, I wish that my experience was like his. I wish that I could treat the voices I hear when I am psychotic by talking to people, or learning how to handle the voices, or learning what they represent in my life: pain, loss, regret, self-loathing, etc.”

On social media (mostly Twitter) people often send me “natural” ways to heal schizophrenia, or they send me articles where the author states that a psychotic episode is similar to a Kundalini awakening. (Here is a short article on it, but usually people send much lengthier ones).

Not only would I love to treat my voices by talking back to them or discovering their meaning in my life, I would also love to be enlightened. No one wants these things more than me, but the truth is, the voices I hear often turn threatening (not toward others, but toward me) and I am afraid to try these techniques because what if I lose a battle with the voices and end up dead? Was going against “the medical establishment” that people often write to me about claiming it is killing me and a big scam, really worth it if I am no longer living? No. The answer is, no.

I can’t tell other people how to treat their mental illness. I can’t say what does, and what doesn’t work for others. I can’t say that a “Kundalini awakening” is a mental illness (maybe it is, and maybe it isn’t).

What I can say is that I have had some amazing insights into religion and life while I was psychotic (much of what happens when I am psychotic is simply nonsense or terrifying), and those insights have stayed with me. I say that to prove that I don’t have all the answers to mental illness. The fact that so many people believe they are Jesus when they are psychotic means something. I am not willing to speculate on what that means, because I don’t know. I don’t know why most of my episodes are highly religious in nature, and others describe this too. I’m not sure why that is. You’ll have to consider it for yourself.

I do know that I wish people trusted me to find my own path with my schizophrenia. I believe that I need to take medications in order to live the best life I can. I can respect that some people don’t believe that. Okay, then… you go your way, and I’ll go mine. I’m taking my chances on the treatment that has saved my life more than once.

Believe me, I would love to try something else and be successful, but I’m not willing to risk my life and relationships for it. Some people believe the medical profession is trying to kill me, but I know I would be dead without it.

 

The Power of Hello (revisited)

18 Friday Dec 2015

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

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Fridays are the days my husband cooks for the homeless and low income. Today is a special Friday because not only will my husband and the other volunteers be serving up a hot meal, they will be giving out Christmas gifts – tarps, blankets, flashlights, etc. And my husband and a few other people made their annual 100 loaves of banana bread and put a red bow on them to give out as well.

Thinking about the homeless at Christmas time made me think about Brian.  I wrote the following post about him months ago. Wherever you are Brian, I’m wishing you health and happiness and a warm bed this holiday season.

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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.

Helping Someone In Crisis

16 Wednesday Dec 2015

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

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A couple of years ago, my husband’s father bought a condo near us, so he could spend half of the year here. He lives the other half of the year in France, where he is a citizen. When he and his wife arrive here every year, we help them with their cable bill, medical, insurance, property taxes, etc. They simply don’t know the ins and outs of getting things done in the United States.

I’ve never really thought about how things work in this country until I have had to try to explain them to someone who has never dealt with our “system.” The way we have things set up is extremely complicated.

I know that most people don’t live on the streets by choice, but some do, and others live in camps or trailers off the grid. Seeing how complicated we have made everything, from hooking up your television, to going to the doctor, it doesn’t surprise me that people don’t want to participate in any of it. Don’t even try to fill out the paper work and make a claim to disability or file your yearly taxes, those two things have become almost too complicated for the average individual to figure out on their own.

I can understand how easy it is for someone in a mental health crisis to go from having an apartment, to being homeless in less than a year. During a mental health crisis like psychosis there is no way I could participate in the “system” we have set up. I would be unable to figure out my insurance. I would be unable to figure out the ins and outs of banking. I would be unable to pay my bills online. I would be unable to be an advocate for myself in terms of bills, medical, pharmacy, etc. (I think some of this applies to the elderly, too, particularly those with memory issues).

It must be terrifying for caregivers of people with mental illnesses, learning disabilities, and the elderly, etc. to imagine what would happen to the people they care for if they were not around to help them find their way through the hoops and mazes we have to work through in order to have shelter, heat, food, and a way to pay for those things. We have not made the necessities of life easy for people to acquire and manage.

I know my husband worries that if something happens to him, and I have a crisis, that my life will quickly spiral out of control as bills go unpaid, insurance is lost, and the complicated system we have set up is too difficult for me to find my way through.

With so many pressing problems like gun violence, mental health treatment, terrorism, the deficit, etc. there is no way anyone is going to campaign to make the details of life simpler for those people who are most vulnerable, it just isn’t going to happen, but there is something people can do. If you see someone who seems to be struggling to pay their bills, do their banking, or buy their groceries, call Health and Human Services (Adult Services). An early intervention can keep someone safely in their home and get them the support they need.

Let’s agree to watch out for each other. You never know when you, or someone you love, will need the concern of a stranger to help you survive.

 

Psych Central

15 Tuesday Dec 2015

Posted by in mental illness, schizophrenia, Uncategorized

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Here is a blog post I wrote for Psych Central this morning. It is about the issue of companion dogs – how they aren’t for everyone. If you are considering a dog, or even if you have one, pop over and see what you think.  It is here.

Here is an article I wrote last week about 5 ways to recover your self esteem after a mental health crisis. I think it is helpful. What do you think?  You can find it here.

It’s beginning to look a lot like Christmas…

Focus On Retail Workers

14 Monday Dec 2015

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Today I will be making snowman cupcakes, brownies shaped like Christmas trees, reindeer cookies, and star and angel shaped mints. The ingredients for these holiday treats are just a few of the things my husband and I have purchased lately. We also bought craft supplies to make 16 coworkers holiday gifts (just something small), stocking stuffers for each other and for my parents, and ingredients for my husband to make his annual 100 mini loaves of banana bread for the homeless. Of course while we were out, we picked up a few things for the house and for ourselves.

That is a lot of shopping. I think it is accurate to say that is at least 10 times more shopping than we do most other months of the year. During this time of year, when I am checking out at a store, I always ask the cashier, “Are you super busy today?” Of course, they almost always say, “Yes.” Then I ask them, “Are people being nice to you?”  They usually tell me that people are being nice to them. Then I say, “Because people can be rude this time of year when they are looking for sales, spending so much money, hurrying to this party or that one.” Then they usually open up and tell me about how rude and mean some customers are to them.

I know it doesn’t seem like much to remember to be nice to the people who work in shops, malls, grocery stores this time of year. But it could make a difference for someone who may be struggling with seasonal depression, bipolar disorder, schizophrenia, autism, cancer, heart disease, diabetes, etc. This is the busiest time of year for anyone working in retail. People with retail jobs are probably working long hours, dealing with every kind of person imaginable, and they are told to keep their cool, and keep a smile on their face. It cannot be easy to provide good customer service to everyone who walks through the door. And of course one in four of them are struggling with a mental illness, and many of them have other chronic illnesses.

It is hard to get out of bed every day. It is even harder to get out of bed, get yourself ready and go to a job. It is tough to put in 4-10 hours. It gets harder still when your job is dealing with the public. It gets more difficult still, when that public can be grumpy or rude because there are longer lines than normal, gifts are expensive, shops are crowded, some items they want may sell out, they may not have the money to spend but they feel they have to.

I know it is the season of giving and people do remarkable things for one another this time of year. I know there is more generosity and kindness in the air than at any other time or season. I also believe there is some magic to be experienced. But at the same time, people can forget that wonderful spirit when they walk into a store and start shopping. I’m just asking that we remember those people who work their tails off during the holidays and extend some of the wonder to them and joy to them.

If you believe our actions send out ripples into the world then start a chain reaction of kindness, compassion, peace and love – imagine how many people retail workers see every day and how many people they can pass the ripple onto. You may be the one who starts the ripple that changes a life or lives. We have the power to make the world better, let’s use it.

Artists Who Promote Stereotypes Of Mental Illness

13 Sunday Dec 2015

Posted by in mental illness, schizophrenia, stigma, Uncategorized

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I try to buy products that are handmade, recycled, upcycled, used, etc. I go to thrift stores, used book shops, and love the website, Etsy. The reason I do that is so that I can feel good about all of my purchases knowing I didn’t contribute to companies that harm their workers, use child labor, or pollute the environment. Of course I also support small businesses by shopping at Etsy and support many nonprofits by shopping in their thrift stores. It is a win-win situation all around.

I am not always successful at being a conscientious consumer though. There are times when I am in a hurry and buy products that I normally wouldn’t buy, or times, when I don’t do my research and find out later that I have supported a business, corporation, or in the case I am about to tell you about, some artists that I had no idea created stereotypical information about people with mental illnesses.

I saw this band, and a video they made, in my newsfeed on Facebook (the link I am sharing isn’t the same one I originally saw).   I listened to the song again and again because I loved their remake of the original (I like the original, too).

I posted the video to my Facebook page.

Yesterday, I decided to look up the band on YouTube and see if they had any more songs that I like. This is the first song I found (Trigger Warning – suicide).  Is it possible for the band, Disturbed, to be any more stereotypical about mental illness than they are in that video?  The part that really bothers me is that the video has well over ten million views.

I do not want to support a band that makes videos like that. I guess they think that mental illness and psych wards make you edgy, dangerous, different, and cool. It is easy to see why so many teenagers write poetry about mental illness and inaccurately think they are “crazy.” When the bands you listen to and look up to are making videos that you watch over and over again and those videos are about stereotypes of mental illness – when was the last time you wore a uniform in the psych ward? That isn’t of course the worst of it – the message of the video is that the “keepers” of the psych ward are “jailers” and they are out to punish, change, hurt, and subdue, and even kill you.

I find that people who fall back on stereotypes to sell their art are not very creative. They certainly aren’t edgy, different, or cool. To be truly cool and edgy you have to put a new message out there. This one is as old as lobotomies, and I give this band a thumb down. No, worse than that, I give them an F at social messaging that impacts others. They reached millions of people with images that harm millions of Americans. I wish the media would pick up on this type of “stereotyping” and call artists out and hold them accountable. It is a shame that they can make money by making our lives worse – we have to live with the stereotypes they promote. This band reminds me that we have such a long way to go in seeing mental illness as the disease that it is, and we can’t even count on artists to take us the next mile or so – we have to move ourselves forward and it feels like we have to do that by crawling on our hands and knees.

 

Having A Mental Illness But Thinking Of Others

11 Friday Dec 2015

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

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I took three coats out of my closet last night. My husband is going to take them to the church where he volunteers to feed the homeless and low income. I feel good knowing that I am giving a gift, even if it is a small one, to someone else today.

It is good to get out of my own head. It is good to stop thinking about my own problems and think about others for a while. Having a disability is not a competition. It is not, “My life is harder than yours, or they have it worse than me.” The important thing to remember is that as humans we all struggle. It isn’t easy for any of us.

And although it isn’t a competition, when I think of the lives of others – people who have survived war and lost limbs, people who have survived a fire and are badly burned, people who have a terminal illness, people who have no shelter this winter, people who are hungry, people who are living in war torn areas, and the list goes on of ways that people are suffering- I think to myself, “I will take my struggles over theirs.”

There is an old story about a group of people throwing all their problems into the center of the room, and each person being required to pick up someone’s problems and make them their own. All of the people in the group chose their own problems instead of trying to live with someone else’s problems.

People look at us and don’t want our problems, and we in turn look at them, and don’t want theirs.

I think it is important especially for those of us with a mental illness, to consciously think of the struggles of others. It isn’t that I think we are all narcissists and thinking only of ourselves, but we can spend a whole lot of time looking for our symptoms to manifest – changes in sleep, weight loss, weight gain, changes in thought patterns, anxiety, depression, etc.

It is easy to get lost in ourselves and our illness. Insight into our illness is important, but I have found that when I am concentrating on someone else, I suffer from fewer symptoms. When I am focused inward, I notice every small change in my well-being. The truth is I am healthier and happier when I am not so self-focused.

Let’s all give ourselves a holiday gift this year – let’s give some coats or sweaters we don’t use to a homeless shelter, let’s buy a few toys for foster kids, let’s make soup for someone battling an illness, let’s call a friend who recently lost a pet, or a job. Let’s reach out and try to ease, if only slightly, the suffering of someone else.

The gift you receive in return may be a little less of your own suffering. We are important to one another – everyone benefits from generosity, empathy, compassion and care. I think if we focus on others for a short time every day, we can make life better – that is such important work – the most important because it is love and we all know that love can get into the cracks and heal most wounds. Let’s be the ointment others need. It’s good for us, it’s good for them.

Netflix and Psych Central

08 Tuesday Dec 2015

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My new blog post on Psych Central is up. It is about a new series on Netflix called, River.  It is a cop show so it is not recommended for children, but for those of you who are curious, I think it does an excellent job of portraying schizophrenia. Although, in an interview, the main actor says it is not schizophrenia he is portraying – how disappointing.  I hope you enjoy the post. If you watch the show, let me know what you think.