The Long Road to Recovery

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I know I wrote about identity recently; introducing and thinking of myself first and foremost as someone who lives with schizophrenia. I’ve thought more about it, and I discovered that the more I concentrate on developing a routine that includes journaling, sketching, blog posts, mini-essays for social media, and a few projects I am working on with other writers, the less I identify as someone with schizophrenia.

I have to say that I honestly think giving people with a brain illness something meaningful to do is an important part of helping them to live a fulfilling life. The more things I add to my schedule (like writing a blog post, or writing a poem, or sketching a picture, or taking a walk) the happier I am. At night before bed, I fill out a journal called, “Every Day is Epic” and I have found that the more productive I was during the day the higher I score my overall day on the “Epic Meter.”

I know that I can’t go back to working a forty hour a week job, and I am not having any luck finding a part-time job that I think would be a good fit for me. So, I have come up with some book ideas (to co-author with other writers), and I think that the book ideas (projects) are a good way to use my time, talents, and produce some income. I haven’t been successful at working on the projects for a set amount of time every day, but I am trying to work up to that.

No one taught me how to live a fulfilling life while managing the symptoms of schizophrenia. I have had to forge a path of my own making, and I think I am getting increasingly better at it. I am sure that therapists and counselors, and psychiatrists know that it isn’t healthy to think of your illness as who or what you are.

I am sure professionals also know that having meaningful tasks to do make a person happier, but they don’t usually spend enough time with patients or clients to discover how to implement those things into real life. Also, they may not be aware that someone thinks of themselves first as someone with schizophrenia before they think of themselves as say, a writer, teacher, painter, baker, cook, artist, quilter, knitter, etc. Also, they may focus on if someone is hearing voices or not, and not how that person is spending their days (like are they sitting around in a room all day with no one to talk to and no meaningful tasks to accomplish).

My goals are to write for two to five hours a day. I don’t know if I can do that, but I feel like it is possible and I am going to shoot for it (maybe starting with a half hour, or an hour at a time). Spending five hours a day at something may not sound like a lot to many people. It would be a huge accomplishment for me, though, and every minute I am writing, I am identifying not as someone with schizophrenia, but as a writer, or an artist or a business partner (with the co-authors of the projects).

I am working my way toward recovery one day at a time, and I think I am discovering some life-changing treasures along the way. I hope we can share the riches together and all live more productive, fulfilling, and meaningful lives.

 

Looking for Support? Don’ t Trust the Web

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Trigger Warning: Suicide

There is so much that is helpful and beneficial on the internet, and there is so much that is harmful and negative. Three of the things I love most about the internet is the ability to network with writers, and mental health advocates/agencies/nonprofits, the access to many university-level classes in writing, and the access to information to satisfy my curiosity or for research.

But like I mentioned before, the internet is not all healthy, rewarding, educational. Two of the things that I find harmful on the internet is the comment section under articles I write (I have written about suicide and had people comment that I should kill myself), and the support groups that are unmoderated on social media like Facebook.

There are several groups for people with schizophrenia, and so frequently I see young women posting pictures of themselves in the groups, and it appears they are simply looking for attention. I don’t see how that is at all relevant to schizophrenia or helping or supporting others. There are also posts that frequently say that the person is thinking of harming their self. I think it is awful to post those kinds of alarming situations anonymously in a group of people who are already dealing with mental health issues. Of course, those posts get hundreds of responses asking how to contact the person, how to report the post to Facebook, asking the person to call a crisis line, etc.

I realize that some people are all alone and have nowhere else to post their pain and their struggles, but it isn’t safe to do that sort of thing on social media or anywhere else on the internet. If you are in crisis, there are people just waiting to tell you to go ahead and harm yourself. There are also trolls that use those rooms/groups to play jokes on people (of course I don’t think it is funny, but they do).

I love the internet, and I am addicted to social media but other than using it to network with people (helping me stay less isolated), I don’t use it to better my mental health. I know that resources are few and money is tight for so many people, but if you are using the internet to get support, or get advice, make sure that you are dealing with a group or people who are safe and legitimate.

Please don’t post about a crisis and expect professional help. If you are having a crisis, please go to the nearest hospital or call your local crisis line. The internet is great and provides so many benefits to our lives but it can also be dark and dangerous, and I don’t want anyone to get hurt.  Stay safe friends.

It is all About the Risk

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People with schizophrenia (and those without) frequently have difficulty in social situations. I figured out what the big deal is behind some of the anxiety, discomfort, awkwardness of social situations for so many of us, and what I discovered was that it has to do with risk. We all have to risk something to be around other people and interact with them.

I am in a class right now, and I am required to critique other writer’s work. I critiqued one woman’s essay and completely misunderstood what she wrote. She may have thought that I am dense, or that I am a poor reader, others in the class may have thought that my schizophrenia impacts my cognitive abilities or many other things. The point is, to be in the class, I have to take risks. I have to risk looking stupid. I have to risk misunderstandings of all kinds. There is so much to risk just by taking a class.

Going to parties, or having a job, or going to coffee with a friend, all of these things require risks on different levels. Having a job involves a lot more risk than going to a party, and having coffee with a friend requires less risk than that of attending a party. But all social interactions require us to take risks. The better we are at taking risks, and recovering from flaws, mistakes, failures, etc. probably corresponds with our level of anxiety about being with people.

Before I was on medication, making a mistake or being embarrassed could cause me to spend the whole night awake thinking about what a fool or failure I was, and I would play the incident out in my head over and over again. I would torture myself. Now, that I am on medication, and my inner voice is very subdued, if not almost non-existent, I am not as hard on myself. I wonder if some of this has to do with age and the fact that I am more gentle with myself in general? I’m not sure, but for whatever reason, I recover much quicker from social “mistakes” than I used to.

I think this “recovery” from slip-ups, missteps, accidents, misunderstandings, etc. is what keeps me from slipping into complete social isolation. I am not “horrified” that I am an imperfect person and that those imperfections play out in the social arena every time I enter it. I also don’t consider myself a complete failure or idiot for making a mistake or looking foolish.

This discovery felt very relevant to me this morning after thinking about my class and my interactions with other people.

A Change of Identity

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I applied for a blogging job (writing about schizophrenia), and the editor said I wasn’t a good fit. I waited months to hear from the company, and I held on to hope all of that time that I might finally have a part-time job. So, I cried when I received the e-mail rejecting me. I received a gift from my brother and his partner the same day in the mail that said, “We heart you” so, thankfully there was a band-aid for my wound.

Considering I wrote about happiness yesterday and trying to love the negative along with loving the positive, I tried to love the news about the blogging job (it took me a couple of days to get around to even considering loving this news).

For almost twenty years I hid the fact that I have a mental illness. I hid my diagnosis from family (my husband’s) as well as friends. I didn’t tell people about my illness because I was ashamed of it. Then, three years ago, I posted an essay on Facebook and opened up to the whole world. That opening up, revealing my diagnosis, has not been a bad experience. I have met wonderful people, and feel that I have grown into a role as an advocate/voice for people with schizophrenia and other brain illnesses.

Hiding an illness takes a lot of energy and the shame and embarrassment behind the decision to hide it wears on a person, too. Coming out in as bold a fashion as I did (starting a blog, writing dozens of articles and essay and publishing a book) puts the focus squarely on the identity of illness. I was saying loudly, clearly, and to everyone that would listen, that I have schizophrenia.

While I was shouting to the world that I have schizophrenia I was also trying to convince and tell people that I am a wife, sister, daughter, friend, aunt, writer, student, etc. but I don’t think that message was nearly as loud or nearly as obvious.

Well, not getting the job as a blogger who writes exclusively about schizophrenia pushed me a way I have not been pushed before. From now on, I am going to introduce myself to the world as a writer first and somewhere down the line as someone with schizophrenia (if that even comes up). I am no longer going to center my identity around someone who has schizophrenia.

If I had landed the job blogging twice a week about schizophrenia, I would have to be thinking about my illness all the time, researching, writing and constantly trying to find ideas to write about. I am currently taking a class for writing non-fiction (something I regularly do), and I am not writing about schizophrenia. I am writing about my life as a kid, growing up, my family, mistakes I made, etc. In fact, every assignment but one has been about my life before I even knew I had a mental illness.

So, am I happy now? Do I love the negative along with the positive? I don’t know if I love the negative, but if you read this blog, you can see I certainly have reason to be hopeful and even thankful I didn’t get the blogging job.

There might be something to this theory about happiness after all.

Is it Possible to be Happy and Have Schizophrenia? Spoiler: Yes.

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Last night before going to bed, I read a long article about happiness. Of course, I thought I would remember which magazine it was in so I could write about it today, but I can’t. I tried Googling words and phrases from the article, but it turns out there are a lot of articles, essays, and general information about happiness on the internet.

What stood out about this article to me was the idea that you have to love the challenges and negative things in your life to be truly happy, and you have to look at life as a game. In the article, the author wrote about how if you view life as a game you wouldn’t want that game to be without challenges.

Okay, so before drifting off to sleep, I started thinking of my diverticulitis which has completely changed my life. I am so careful about what I eat, how much I eat, how much fiber I get, eating fruits and vegetables, and we used to go out to eat all of the time, and now I would prefer to eat at home. It also presents challenges when we are traveling, so we don’t travel as much.

What can I love about diverticulitis? Well, I eat 5-7 servings of fruits and vegetables every day. That is something to love about diverticulitis. Having the illness got me to eat a healthier diet. Also, I am by far more mindful of what I put in my body. This isn’t to say, I don’t eat potato chips and chocolate, I do, but I never engage in mindless eating now when before I did. Lastly, having diverticulitis helped me learn that I have willpower and a great deal of control over my actions. Okay, so those were the only things I thought I could stretch and say that I love about having diverticulitis.

After I did the exercise with diverticulitis, I had to try schizophrenia. Is there anything I can love about having schizophrenia? Even writing the word love and schizophrenia in the same sentence is difficult, but I am going to move past that and try the exercise.

I like the woman I am with schizophrenia, and I don’t know who that woman is anymore without schizophrenia. There are symptoms that I know are my illness, but there are other things about me where I can’t separate the illness from my personality. So, by loving/liking myself, I could also say I love/like schizophrenia (definitely not all of it!). But there are a few things worth mentioning; I think schizophrenia has increased my compassion, and having schizophrenia has made me more empathetic. Schizophrenia has helped me see the bigger picture which includes me, and many others who are both like, and not like, me. Schizophrenia has helped me make connections in my brain and my thinking that I might not otherwise make.

There you have it; I was able to love two of my biggest health concerns for some of the things they bring into my life. Am I one step closer to happiness? Well, I already consider myself happy, so no, but if I keep looking for the positive buried in the negative I might end up being deliriously happy, who knows?

Progress, but Beware

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A digital pill, one that allows doctors or family members to monitor compliance with medications, was approved by the FDA. It is revolutionary. It sounds like the perfect solution for seniors who have complicated medication routines and need help remembering when to take this or that pill. The dark side of the discovery is that the potential for overreach and abuse is enormous.

The pill, equipped with a sensor, is activated when it hits stomach fluid and sends that data to a patch worn on the rib cage of the user. The information is then transmitted via smartphone to everyone “approved,” by the user.

That all sounds on the up and up and if my grandparents were still alive it would have made life so much easier for me because getting them to take their medications at the right time was an obstacle we never fully conquered. But this digital breakthrough wasn’t approved for pills for blood pressure or Alzheimer’s, or statins. It was approved for Abilify, an antipsychotic medication used mostly for people with schizophrenia, bipolar disorder and in some cases depression.

If that doesn’t sound alarming to you, maybe you don’t know the history of mentally ill people’s treatment in this country. A quick Google search will reveal that before the time of World War II many doctors believed in, and practiced, eugenics. Up until the 1970’s some states still had sterilization laws on the books. And of course, there were life-long stays in institutions. Few can claim ignorance about the lobotomy with the last “procedure” performed in 1967. And today, it is difficult to get treatment for a mental illness, and many people who suffer from one are on the streets or in prison.

With that being our history can you blame those of us with an illness like schizophrenia from being concerned? Will the pill be used to coerce parolees to take their medications? Will psychiatric facilities require the use of the digital pill before recommending release back into the community? Will Social Security require those on disability to report their medication compliance?

If schizophrenia weren’t the most demonized of the mental illnesses, I wouldn’t be as concerned. But the fact is every time there is a mass shooting in this country the media is quick to bring up the possibility of schizophrenia, and Hollywood doesn’t help that image at all as they never seem to tire of writing the creepy, lone killer as someone suffering from schizophrenia.

The reality is that mass shootings are more tied to a history of domestic violence than anything else and that people with schizophrenia are more likely to be the victims of crimes than the perpetrators of a crime. Also, they are more likely to hurt themselves than others.

It would be convenient for the public, lawmakers, and caregivers if everyone with a mental illness could be chemically restrained and there was a way to monitor and track that. I think everyone would sleep better at night, but it is a false sense of safety and a violation of rights.

I would like everyone who suffers from the same brain disease as I do to have as close as possible to a “normal” life, but that should remain their choice even if most people believe those who are ill are incapable of making that decision.

Hopefully, the people prescribing this new technology set limits on its use.

Self-Help? Pop Psychology? Maybe, a Little

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As many of you know, I struggle with a lack of motivation, and I’m not a big fan of self-help or pop psychology to deal with this issue. I have found a morning and bedtime routine that helps me so much, though, and the whole thing would probably fall under the categories of self-care or pop psychology. I find this amazing because I normally stick to psychiatry as a way of dealing with my symptoms.

I bought seven books ( I will list them at the end of this post) all designed either to increase productivity, increase happiness, or to increase creativity. Each of them is available on Amazon.

Every morning, I work through one exercise in each of the six books, and then I do one book before bed. I recently added a color meditation to my morning routine where I sketch a color picture for 15-30 minutes a day as well.

The progress I have made in productivity and generating ideas for writing is significant. It used to be on a bad day, or low productivity day I wouldn’t get anything done. I would spend the whole day watching news and scrolling through social media with a little reading of essays and blogs thrown in. Now, even if I have a low productivity day, I can tell myself at least I did a sketch, a writing exercise, and six happiness/productivity exercises.

It isn’t much to brag about regarding accomplishing something, but the exercises do make me happier. So many of the exercises are about generating gratitude lists, thinking about things you enjoy, listing your favorite foods, or scents, etc. All these things get me to think about things that are positive. I rarely think about schizophrenia while I am doing my exercises. And each night I go to bed on a happy note having filled out the page about how my day was epic (it is an epic journal).

I am trying so hard to get my life on track and be a productive and contributing member of society as well as experience as few symptoms as possible. The only other thing I have added to my day is taking two to three short walks outside. I read a study that people who left their technology at home and took a walk every day making an effort to notice the trees, the houses, the birds, the flowers, etc. showed a significant and verifiable increase in their well being. So far, I use the time to call family members, so I am getting the exercise and the fresh air but not the benefit of noticing my surroundings (I’m working on it!)

Below is a list of the books I am using in this experiment. My new routine takes commitment to try to overcome symptoms and live a more productive life. For someone like me who lacks motivation, this seems like an impossible task, but honestly, after doing it for a month, I wouldn’t give it up. It makes a huge difference in my attitude, my wellness, and my days.  I’m not giving up my medication or my doctors, but I might need less help managing my anxiety and other symptoms.

 

Panda Planner

642 Things to Write About

Life by Design: 52 Lists, Questions, and Inspirations for Finding Your Happiness

How to be Happy (or at Least Less Sad)

52 Lists for Happiness

Start Where You Are: A Journal for Self-Exploration

Every Day is Epic

Many Sides to the Same Story

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We have to be complicated and complex enough to hold two extremes in our hearts and our minds.

I try very hard to present as someone with schizophrenia who blends into a crowd. I am someone who is college educated, married, has been both poor and middle class, struggles with health issues, and looking for work. I am someone who is happy, gets angry, envious, tired, anxious, etc. like almost everyone else.

That is the point; I try to show the world how much I am like the average woman at the grocery store, or gas station, or restaurant. I want this image of people with schizophrenia to be more common in our books, movies and everywhere in our lives, but the truth is, there are other sides to schizophrenia that exist as well, and we can’t overlook them or pretend that they are simply stereotypes.

Some people are suffering from hallucinations who can’t take care of their basic needs and who end up on the street. There are others who commit petty crimes and go from prison to street, prison to the street in an endless cycle. There are also people who have support or family that help them get into treatment or residential facilities, but who suffer too much from symptoms to live on their own. And there are those, the ones I hate to admit have the same illness I do, who are violent or dangerous.

Somehow in our advocacy, we must embrace, or address, all these different manifestations of the same illness because to not do so is either seeing schizophrenia through rose-colored glasses or seeing it as the stereotypes the media portrays.

We need more people speaking out and showing us their average lives because we have lived too long with the opposite of that reality, but it is important when we write letters and vote on election day not to forget those who are in different circumstances than us. Those people who refuse medication or who medication doesn’t completely eradicate symptoms.

The only way I know how to be an advocate for all of us is to continue to remember that I am not a spokesperson for everyone with the disease. It is different for everyone, and to remember to talk about those who are still overcome by symptoms, or lack of treatment, or poverty, or medication resistance.

The best I can do is write not only about myself but those on the streets and in prison and in other situations so that people don’t get the impression that schizophrenia is not an issue that needs further study, funding, programs, and legislation.

Oh, how cliché the truth – it’s complicated.

 

A Slice of my Life

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I got separated and divorced in the early nineties. I smoked a pack of Marlboro Lights every day in the early nineties. Even though I lived near Seattle, I had not yet tasted a Starbucks. I had a cellphone that was larger than a football that I carried for work that looked like a bread box with a strap. I was a social worker for the State of Washington.

Sinead O’ Conner, Madonna, and George Michael played on the radio. Songs from the eighties like I Still Haven’t Found What I’m Looking For by U2 and Need You Tonight by INXS still got stuck in my head and I would crank them up when I heard them come on the air.

AIDS was an epidemic, and a week didn’t go by without a friend, or a friend of a friend or a relative of a friend dying by suicide or passing away from complications from a depleted immune system.

It was a Friday night. I drove a white Subaru hatchback. I had missed the ferry from Seattle and drove around through Tacoma and Gig Harbor. Once in Bremerton, and close to home, the stress of being at my brother’s house where death dark and stigmatized and like the plague was close to his partner, caught up with me.

In my car, I forgot how to drive. I forgot that I could pull the keys out of the ignition. I forgot that I could hit the brakes without hitting the clutch and the car would sputter and stop. I forgot there were brakes.

I lost the ability to think through any of my options. I turned toward the 7-Eleven, put my hand on the horn, jumped the curb and came to a stop with the nose of my Subaru inside the cereal aisle. The people who were in line at the store surrounded my car. The glass from the front of the 7-Eleven was scattered across the store, the hood of my car and the sidewalk.

Not knowing what else to do, but having regained my capacity to reason and deal with the mechanics of driving, I backed my car out of the store and off the sidewalk and into a parking space. The police had already arrived. The first officer was a jerk. He spoke to me in a harsh tone and asked if I was drinking or using drugs. I told him no and offered to take a test. After a few more questions, he turned the situation over to an officer in a second patrol car, and he drove away.

The second officer was funny, but I was still shaken up and scared. I asked if I would have to spend the night at the hospital getting drug tests and he said no. While he was filling out his report, he asked me where I worked. I told him I was the on-call worker for CPS (Child Protective Services) and he could not stop laughing while he was still chuckling a call came over his radio of a child endangerment case and the person on the line said they needed CPS. The officer picked up his radio and pretended to respond by saying, “Don’t worry, I have her in my car.”

Those were the early nineties, and somehow I got out alive.

What Does Someone with Schizophrenia Think About Gun Control?

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I posted this on Facebook the other day, and it received more attention than most of my posts. What do those of you with a mental illness or with a loved one with mental illness think about this? If you hate this idea, there is no need to be disrespectful; we can disagree without disliking one another.

In the Wake of Waffle House

When I was married to my ex-husband, we went hunting for grouse on many evenings after he got home from work. Once, while camping, he wanted to teach me to shoot. I shot his pistol twice. That was a couple of years before I tried to jump off a bridge and before I took all of my medication and needed to have my heart jump started.

This might be an unpopular opinion, but I am someone who actually knows what it is like to be suicidal, delusional, paranoid, and psychotic. I want nothing to do with a gun. I don’t want to go to a shooting range. I don’t want to shoot at a tin can. I don’t want a gun in my house for safety, and I don’t want to be around anyone who has one, not in Arizona (open carry) or anywhere else. If I see a gun on someone’s hip when I visit Tucson, I immediately move away from them.

I know that the majority of people with a mental illness are not violent. I know the statistics, mentally ill people are more likely to be victims than perpetrators, but that doesn’t negate the fact that I have been out of my rational mind on more than one occasion. I could never live with the guilt of hurting someone even if I did it while psychotic and the court found me incapable or whatever. No. I don’t want that chance.

You see, I don’t completely trust the mind I have been given – it has deserted me before. When I am in recovery, I won’t hurt a human or animal (I do eat fish), and even though this is true of me, I can’t say with 100% certainty that I will never again be a danger to myself or others.

I get vaccines every year, not so much to protect myself but to protect those who are more vulnerable and could lose their lives if they contracted certain illnesses. I do this because I want to live in society and be a responsible and compassionate member. For this reason, I don’t believe those people with a brain illness should own guns. There are many restrictions to driving with certain illnesses, and I see gun ownership in the same way.

I should never be allowed to purchase a gun and society has every right to enforce that on me for the good of the whole (me included). Go ahead vote to take away my second amendment rights; I will be the person behind you, checking the same box you do. Don’t worry, my sense of freedom won’t be shattered.