Tag Archives: schizophrenia

I Can’t Do That Anymore

16 Friday Oct 2020

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I attended a virtual event yesterday about mental health. I was supposed to give my input, but I didn’t know exactly when I would be speaking. After an hour and fifteen minutes, I needed to log off because adrenaline had been pumping through my body the whole time, and I was sick from it. It took me an extra dose of medication and two to three hours to get back to a place of feeling okay.

One of the worst parts of this illness is the desire to do things that I cannot do. I want to feel 100% all the time. I want to be able to speak at events, travel, visit friends and family, attend conferences and workshops, but so often, it isn’t possible for me.

It is hard to accept that I was unaware of any limitations that held me back for much of my life.  I did what I wanted to do. I went where I wanted to go. I took jobs that I wanted to do. I flew overseas at the drop of a hat. I was strong and capable and didn’t even consider that the things I was doing were difficult or impossible for some people.

Now, I live with many limitations, but the reality hasn’t caught up to my desires. I still see what I want to do and try it, and often it turns out terribly. I don’t want to be someone who never tries new things or says no, out of fear of a negative result, but when things go wrong, and people are counting on me, or I have my hopes up, I feel like a failure.

I think many people are like I used to be. They are unaware that the everyday things they do are impossible for some people. I think this makes people less forgiving when those of us with an invisible illness say, “I can’t do that,” or “I’m having trouble and need to leave.”

It is easy to judge people and consider them unreliable or flakey or incompetent or even someone who lies about why they can’t do something. I hope that I have learned from personal experience that not everyone can produce at the same level, have a busy schedule, go to every event you or me, or others can.

I need to extend more grace to those people who have a more difficult time than I do. I need to believe that they are doing the best they can. I hope others will extend that grace to me and realize that I wish I could do all the things, but that simply is a life I have to let go of and accept that I struggle mightily with so much.

Let’s try to believe what people say, show compassion, and think the best of one another. I need this reminder, and I think some others do as well.

Let’s Not Forget

12 Monday Oct 2020

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Let’s not forget that, along with a year that many call a dumpster fire, there is still the ocean. Sharks and whales and orcas. I heard that a white orca was off the coast of Alaska. Remember, the orca that carried her dead calf around for two weeks or more? That orca has a new calf. I try to imagine her grief not entirely lifted, but the joy of swimming in the pod with her new baby very much in need of her, and very much alive.

Let’s not forget that chocolate is still delicious or vanilla if you prefer that. Last night we froze pumpkin pie to take out slice by slice whenever we need the comfort of the taste of Fall.

Let’s not forget that we have people who care about our well-being and if we are okay. I’m not doing okay each moment, but I still see each morning I open my eyes as a miracle, a wonder, a gift. How did I make it to fifty-five? That young girl who once smoked a pack of cigarettes a day skipped school, got called into the principal’s office. Teachers were so frustrated they lost their composure and yelled at me in class because they knew I was ditching, and I forgot a pencil or pen to a shorthand class. “Who does that?” My mother-in-law would say. I do. I did. I was.

Let’s not forget that people still say I love you and mean it. People even buy each other coffee or pay for a stranger’s meal.

Let’s not forget that most Americans are kind hearted people who would stop and help someone struggling. Maybe they would assist the elderly with their groceries or help a lost child find their parent.

Let’s not forget we are a people who smile when walking past people on the street, a practice my in-laws from France think is foreign.

Let’s not forget all of this because it adds up, and it’s not nothing.

I’m Learning New Skills, but I Still Cry Everyday.

09 Friday Oct 2020

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It has been over two hundred days since I had my hair trimmed, went to a grocery store, or ate in a restaurant. I’ve hardly been outside of my neighborhood in the past six months. Many people have gone back to work (or are essential workers and have always been working). My house has not returned to anything close to what it was like in January of this year.

In some ways, this pandemic is trying and challenging. In other ways, it has brought hard work and some much-needed tools and healing to my life. I thought that I was an expert in self-care and managing my schizophrenia symptoms the best way possible, but it turns out I had so much work to do and so much to learn.

Before the pandemic, I took my medications regularly, monitored my sleep, made sure to exercise at least five times a week, and ate at least five servings of fruits and vegetables every day. Along with these things, I wrote in guided journals, had regular appointments with my psychiatrist, and watched my stress levels closely. I still had symptoms, but I thought I was doing the best I could to manage them.

In March, I started seeing a therapist, she didn’t work out for me, and I began to see a therapist who works in my psychiatrist’s office in May or June. She was only allowed to work with me for twelve weeks, and during that time, we worked on tools to manage my anxiety disorder, healing shame, and healing trauma.

I never realized how much work I could do to lessen the impact of my anxiety disorder. It never occurred to me that so many thoughts that I had made me spiral into negative territory and have bad days. I also never realized the level of shame I carried. Although the shame comes from more than my schizophrenia diagnosis, that label alone and its weight can harm mental health.

Of course, not everything is rosy. I cry at least a couple of times every day. I don’t sob. I simply cry a little at the state of the world, the deaths, the stress of constant hand washing, and mask-wearing, and not being able to see family or friends (it has been over a year since I saw my parents or any of my siblings). 2020 has been a tough year in so many ways, and I find I worry about things that were never part of my reality before.

On the other side of that, my resting pulse rate has gone down between ten and twenty points (depending on when I take it), and my blood pressure is lower than I can remember it being in the past. These are the genuine health benefits from working on anxiety. I still have panic attacks, but they are less severe and are over in far less time.

The tool that has had the biggest impact on me is sticking to a regular writing practice. I have written regularly for the past six years, but I wasn’t writing every day. Something about sitting down every day and doing automatic or expressive writing has acted like a pressure valve releasing the steam before the pot boils over.

I have been using a writing technique I learned from a woman whose name is Laurie. If you want to join me in a group where I use what I have learned from her, please get in touch. I plan to run several groups starting soon, and I would love to have as many of you as possible write alongside me.

A Simple Message and a Writing Group

29 Tuesday Sep 2020

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There are times when a message so simple, delivered at the right time, can have a profound impact on our lives. I happened upon one of those messages yesterday. During the pandemic, I have tried to spend time working toward healing and bettering my responses to events and circumstances. I have watched every YouTube video by Brene Brown (if you haven’t done this, I highly recommend it). I also bought several workbooks on healing trauma and emotional regulation. Added to that list are two books by Brene Brown (because there can never be too much good advice and great stories).

Anyway, yesterday, while doing a CBT (Cognitive Behavioral Therapy) exercise, I ran into an explanation about fixed thinking and labels. Fixed thinking ( like saying, I have a terrible memory, or I am awful at math) doesn’t allow for growth. It leaves the person saying those things stuck. If, on the other hand, a person has an attitude of development, they will try math and try to get better at it, or practice techniques to improve their memory, etc. This type of thinking provides for a change instead of the more rigid fixed thinking.

One part of what I read yesterday was about labels and how labeling ourselves is falling into the trap of fixed thinking. Here is the most important statement that rocked my understanding of my illness and myself. The writer said being diagnosed gives you a label.

These past six years of writing publicly about schizophrenia, I have often tried to get other people to see beyond my diagnosis. I have written how I am a partner, a sister, a friend, an aunt, a daughter, etc. The whole time I was writing those words, I was labeling myself as someone with schizophrenia.

Labeling myself as someone with schizophrenia is fixed thinking. It can cause me to believe that it is something about myself that won’t get better and will never change. How I am today is unlikely to be how I will be tomorrow. I can learn to manage my schizophrenia better. I can learn more coping techniques, and equally important, I can add more interests and hobbies to my life. By adding hobbies or passions to my life, I may find things that I identify with more strongly than having schizophrenia. Having a big and complex life gives schizophrenia that much less meaning. It takes it out of the driver’s seat and puts it in the trunk among all the other odds and ends that get tossed in there.

As an example, I am spending much more time writing during the pandemic, and I am spending much more time teaching three different writing courses. Teaching and writing define much more of who I am than the fixed label of schizophrenia.

To continue along those lines, I want to create a community of writers who meet on Zoom once or twice a week. I would have to charge a small fee to cover costs, but I would make it low enough to be accessible to almost everyone who wants to participate. I have found writing in community has helped me generate many words on the page these last six months. If you are interested in being a part of a writing community please contact me with the days and times that work best. I will post again about this soon. Please get in touch if you want to take part in a powerful writing practice that helps you make writing a central practice in your life. The writing you do can be healing, centering, therapeutic, and spark more and more creativity. Reach out because I would love to have you. 

Looking Past the Cracks

25 Friday Sep 2020

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Like everything else, I have a crack in me. I think Leonard Cohen said that the cracks let the light in. I don’t know if anything about schizophrenia is light or a silver lining. I doubt it. I doubt the hallucinations, delusions, anxiety, lack of motivation, voices, psychosis in general, can be seen as positive. I would challenge the person who tried to make light of these things, but that isn’t to say that the crack in me can’t be handled with creativity, with uniqueness, with a type of resilience that makes me, not the crack, shine. Schizophrenia will never be the light, but the things I have faced, the difficulties, the obstacles, can make light of me. I am light. I shine.

Like everything else, I have a crack in me, and although my crack isn’t something I would want for others, I am stronger because of it. I am kinder because of it. I see the suffering of others and don’t turn away. I can meet suffering head-on. I can sit with those who suffer and give them space, hold their hand. I’m no savior. I can’t save anyone. The self must do all the saving. The desire to pass through, to heal, to move on.

Like everything else, I have a crack in me, but I am not the crack. I contain the crack, but it isn’t the sum or total of me. I am compassionate. I am creative. I am spiritual. There is a world inside that contains the crack but isn’t defined or made by it.

Like everything else, I have a crack in me, but I can still sing my favorite song. I can still hold hands with my husband as we walk down the street. I can always write poetry and prose. I can call a friend. I can play a video game and get excited about being one point or fifteen points ahead. I can try harder when I am behind.

Like everything else, there is a crack in me, and it’s not that it is small or insignificant. It’s not that it is hidden or that people can’t see it. It’s not that I don’t need to manage or take care of it. All of those things need to be, but it is that it is a crack, only a crack, not a break, not a missing piece, not a lost part, not smashed or completely broken, ruined of flawed.

Like everything else, there is a crack in me, but there is so much more to this container than the piece that the light can get through. I am an adventurer, a traveler, a human being complete, and full.

Like everything else, I have a crack, but it isn’t the most interesting thing about me at all. Not even close. A crack is a crack, and we all have some. Mine is just this way, and yours is another. Let’s not spend too much time there.  

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

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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

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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

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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

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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.