11 Sunday Nov 2018
Posted in mental illness, schizophrenia, Uncategorized
Tags
depression, disappointment, employment, jobs, mental health, mental illness, mentally ill, schizophrenia], unemployment, work
When your mental illness shows up and knocks you off of your new found high. The pieces are scattered all over the ground, and you are on your knees with your arms outstretched reaching for the broken fragments of your life knowing you have to rebuild for the umpteenth time and wondering where you will find the strength or desire.
06 Tuesday Nov 2018
Posted in bipolar, caregivers, hope, mental illness, schizophrenia, Uncategorized
Tags
brain disease, disability, employment, health, hope, job, mental health, mental illness, mentally ill, schizophrenia], symptoms, wellness, work
I started my new job as an usher for live performances on Halloween. I have seen the first half of the musical Wicked eight times since then. I can not get the songs out of my head. At my polling place this morning as I was waiting in line to vote, I was singing some of the songs to my husband and people around us started to laugh. I had to tell them what my job is and that the only music I have listened to in the past two weeks is from the production. Several of the people had seen the show and others want to.
Ushering is my second job outside of writing that I have held in eight years. I worked for a day at an Amazon Warehouse, but that turned out not to be a place I could keep my symptoms at a minimum. This new job is stressful only in that I have to learn two theater’s seating charts, and one of the theaters seats almost three thousand people.
I know that sounds easy, but it isn’t easy at first, it is complicated. Each shift gets better because for instance now I am confident that the right side of the house is all even seats and the left side of the house are all odd seats. It seems simple, doesn’t it? I don’t find it simple, at least not yet. There are eight different sections to the theater, and each section has its own set of numbering. UGH! After a month, I am sure it will be second nature. It is just this first month that has me stress sweating every time I go to work because I want to do everything right and fear to make a big mistake.
Of course, I love dealing with the public. Customer service is something I have always enjoyed and the more confident I feel about the location of seats, the better customer service I can provide. I like to greet people, and chit-chat with them. I know that sounds strange because only a few weeks ago, I was writing about isolating socially. Well, for years, I did isolate socially, but now I am in the middle of the crowd smiling, laughing and talking.
I have worked hard these past seven days. I even worked three days of double shifts. I didn’t realize what I was signing up for at first, so November is more difficult than any month going forward. It is hard, and I probably won’t get a lot of writing done, but by the end of November, I should be completely familiar with the larger of the two theaters (the only one I have worked in), and that should make the job so much easier and fun. Because let’s face it, working for a theater is a fun job!
Even though I have been writing for the past few years, that is not at all the same as having a job with supervisors, co-workers, customers, etc. I answer to editors when I have an article or essay due, but for me, that isn’t every day. Also, with writing everything is online by e-mail. At my new job, I have to wear a uniform (instead of pajamas), put on make-up, take a shower, talk to people, clock in, do what is expected of me, smile, be pleasant, take direction, work as a part of a team, handle situations as they arise. And learn new information every day and adjust to that information.
There is one other huge difference between working at home and working outside of the home, my symptoms (except anxiety) are less. Of course, my anxiety is high because I am new and I am a perfectionist when it comes to jobs and school, but beyond anxiety, my symptoms of schizophrenia are less.
It turns out challenging myself and trying to reverse the damage this illness causes to the brain is a good strategy. Lack of motivation? Find an environment where you are accountable and expected to accomplish things. Isolating socially? Force yourself to be in the midst of thousands of people where you are required to laugh, talk and engage.
I know that not everyone with schizophrenia could handle a job with so much customer contact, just like I can’t do equations like John Nash, or practice law and be a professor like Elyn Saks. We are not all capable of the same things even though we have the same disease. I will say that I wish I could start a program to get all people with schizophrenia working. The jobs would be different for everyone, but I believe the benefits would be the same: an increase in self-esteem, an increase in independence, and possibly the reversal of some of the symptoms of an illness that can take so much from you.
I did cry at work once this past week because I felt overwhelmed by not being able to answer everyone’s questions and being slow to figure out where people’s seats were, but it was only once and only a little (no tears rolled down my cheeks, they stayed in my eyes).
Despite the crying, the gains from this past week are huge. After a few more weeks, I think I am going to love my job, and I will most likely be stronger, more confident, more capable, more resilient, more productive, more cultured (from seeing so many shows), healthier and happier.
Whoever said an honest day’s work is good for the soul was on to something, possibly something significant regarding schizophrenia. I have needed time to heal, rest, and be in a stress-free environment, but now, working seems like medicine the doctors forgot to prescribe me.
29 Monday Oct 2018
Posted in bipolar, hope, mental illness, relationships, schizophenia, stigma, Uncategorized
Tags
bipolar, brain disease, mental health, mental illness, mentally ill, psychiatry, psychology, schizoaffective disorder, schizophrenia], Voice, writing
I came out publicly (including family and friends) with my diagnosis three or four years ago. Since that time, I have fought very hard to try and show people with schizophrenia living lives that are similar to those without the illness. I have fought to make people like me seen as friends, partners, sisters, brothers, daughter, sons, aunts, uncles, parents, etc. And I still think we need more people with schizophrenia writing these stories. The stories of a successful life despite a severe mental illness.
I had something happen to me the other day that broadened my view and made me feel guilty, sad, and like I wasn’t telling the whole story. I met a mother online whose son’s life is nothing like mine. Many times I have written about the mentally ill who are homeless or in prison but rarely do I write about those with schizophrenia, or schizoaffective disorder who can’t live alone, who are medication resistant, or who never get to the point of managing their symptoms.
It isn’t that I was unaware of people who need more care like inpatient treatment or a group home. I am constantly aware of that because I have a cousin who currently requires that level of treatment. But I was fighting. Fighting for stories of success, fighting for stories of hope, and fighting for stories that I rarely heard, read, or saw in books, movies, or television.
There were many times when I was frustrated by parents and adult children for writing the stories about the illness and leaving those of us with the actual illness without a voice, or way of telling a different narrative. I realize now, that there is room, if we allow it, for all of the narratives about mental illness. There is room for us to talk and hear from those in prison, there is room for us to hear from those on the street, there is room for us to hear from the children of someone with a brain disease, and there is room for mothers, fathers, sisters, and brothers to tell their stories.
All of these stories matter and can help improve our understanding of schizophrenia, schizoaffective disorder, bipolar disorder and other illnesses that impact an individual and the ones who love them. I only hope that with so many people writing about the tragedy of mental illness that stories like mine and stories like other people I know won’t get lost, or not be as valuable (because they don’t fall into our comfort zone or understanding).
I hope along with the stories of sadness, pain, struggle, and grief that stories of hope and possibility continue to find space in popular culture. For years, the heartbreaking stories have captured our imaginations and driven the cultural response; I only hope that we continue to make room for the voices of those who have lived experience because like a kaleidoscope with one blacked out spot, the view is not complete, or as colorful, or as interesting without seeing the whole picture.
23 Tuesday Oct 2018
Posted in bipolar, caregivers, hope, mental illness, schizophrenia, Uncategorized
Tags
blood pressure, blood sugar, cholesterol, chrnoic illness, diabetes, diet, exercise, gratitude, health, hope, medication, mental health, mental illness, schizophrenia], thankfulness, wellness
I received an updated diagnosis from my psychiatrist. My current diagnosis is Chronic Paranoid Schizophrenia and Generalized Anxiety Disorder. I also have diverticulitis and have had to change my diet over the last two years to avoid surgery. I am going through perimenopause and have hot flashes and disturbed sleep. Lastly, I have masses that keep forming in my breasts that require testing, and for one year, I thought I had breast cancer (each time I have a new mass that is a possibility). This list doesn’t even cover the side effects of antipsychotic medication which are high cholesterol, high blood pressure, high blood sugar, and possible liver damage to name a few.
When I read that paragraph and think of all I do to try to live a healthy life, health for me is a full-time job. How much I sleep, and when and what I eat, how regularly I use the bathroom. Then there is making sure I exercise, making regular doctor appointments, having my blood checked regularly, getting mammograms every six months (or sooner if a mass grows), taking my medications twice a day, learning mindfulness exercises, and writing in guided journals that address happiness, gratitude, spirituality, health, etc. I am sure I am leaving out many details of care here.
I don’t believe that everyone can make all the changes and do all the things I do to remain healthy, and I don’t believe everyone, even if they did all these things, would be healthy (I’m not 100% healthy, some of my numbers are borderline). I’m not blaming people who have worse outcomes than me, for their level of illness – not at all. I think people can do everything right and still end up with psychosis, diabetes, cancer, surgery from diverticulitis, high blood pressure, high cholesterol, and many other illnesses. No one is immune from illness or poor health even though so many people would like to believe that it is all in their control because it makes them feel safe.
All I am trying to show by writing down what I deal with is that it isn’t easy to manage schizophrenia, or generalized anxiety or any health issue. Having to watch everything you eat, and having to eat at certain times, trying to get exercise most days, all of that stuff is hard. I wouldn’t be surprised if many people, especially those experiencing so many of the symptoms of mental illness (like depression, lack of motivation, etc.), are incapable of doing all or even half of the things necessary.
There is something else, though. In my latest note from my psychiatrist, he said, “Rebecca has wonderful skills and a positive attitude.” I almost cried when I read that. And I know it is true because despite how hard it is to try to stay well, I am so happy that I get this chance. I am so thankful, grateful, and in awe that I am alive.
On bad days, I feel a little sorry for myself, but most days, most days, I am full of gratitude to see the moon, the stars, feel the breeze and to know what it is like to be loved, and that is just the beginning of my thankfulness. I am thankful that I have food on the table, that I know how to read and write, and that I can come up with ideas to share with people. I could go on for pages, and pages and days and days about the things and people I am grateful to have in my life.
Is chronic schizophrenia hard to live with? Yes, all illness is hard to live with, but is my life worth living, and something I want to continue until I am old and gray (well, I am already almost all gray)? Yes. I want to see thirty more summers, thirty more winters, thirty more falls, and spring, yes, spring!
It’s hard. It’s tough. It’s demanding. It is difficult. But it is beautiful beyond measure and I wouldn’t change my life with anyone because no one is immune from hardship. It is my life, and I believe I only get one, so I will gladly live it, illness and all.
15 Monday Oct 2018
Posted in bipolar, caregivers, hope, mental illness, schizophrenia, stigma, Uncategorized
Tags
candy, costumes, creepy, crime, criminals, Halloween, Hollywood, hospitals, lobmotomies, mental health, mentally ill, movies, psych wards, psychiatric facilities, severe mental illness, sterotypes, stigma
I love October it is the first month after summer where days start to get cooler, nights longer and there are all of those great flavors like pumpkin, cinnamon, nutmeg, and maple. As a kid, October held one of my favorite days at the end of the month, Halloween. But that was long before I had the diagnosis of schizophrenia.
Now Halloween marks the most stigmatizing and stereotyping day of the year for people with a severe mental illness. There are straightjacket costumes, the horror films, the haunted asylums, and many other cultural favorites that make it look like those of us with a mental illness are terrifying, monstrous, and the places we go for treatment are houses of horror.
People have become more and more aware of how costumes, mascots, names, etc. are offensive to certain groups over the years. Look at the campaigns to get the Red Skins to change their name, and the pushback on Hollywood to hire transgender actors to play transgender roles as well as Asian actors and other POC to play roles intended for them. All good, every bit of it.
Many groups have experienced a tide of change about their identities, but that wave has not included severe mental illness. There has been a great deal of public acceptance of anxiety and depression, those two disorders have made it into the mainstream in ways schizophrenia has not. I have seen little shift in public awareness or acceptance of schizophrenia, especially in October.
There is hope, though with movies like Netflix’s Maniac, where the main character has schizophrenia and displays many symptoms, but isn’t a monster, a criminal, or even unlikeable. That is a huge change from the stereotypes on many crime shows that write in the killer as someone with schizophrenia.
The history of psychiatric facilities as places that tortured patients with treatments like lobotomies, ice baths, insulin shock therapy, and other stuff of nightmares, almost cements psychiatric facilities with a role on Halloween. The boarded up closed up, and long unused asylums that dot our countryside don’t help as many people and television shows report tales of ghosts and other haunting stories.
I don’t hate Halloween, though. On the bright side, at least it is a night that involves candy, and who doesn’t want to celebrate pillowcases, and plastic pumpkins packed full of sugary treats, especially candy bars that are full-size.
13 Saturday Oct 2018
Posted in bipolar, caregivers, hope, mental illness, relationships, schizophrenia, Uncategorized
Tags
bipolar, book, coping, exercises, giveaway, hope, journal, mental health, mental illness, recovery, remission, schizophrenia], wellness, workbook, writing
I received my author copies, and I want to pass a couple of them on to you! Like this post and comment for a random chance at winning one of two copies. I will pay for shipping.
08 Monday Oct 2018
Posted in bipolar, caregivers, hope, mental illness, relationships, schizophrenia, stigma, Uncategorized
Tags
bipolar, brain disease, communication, community, groups, mental health, mentally ill, schizophrenia], social media, support, talking, wellness, women
I’ve spent much more time out in public lately, and I have noticed that I enjoy talking to strangers. I usually start up conversations with servers in restaurants, and with cashiers in coffee shops and grocery stores. I frequently say something self-deprecating or humorous in another way, to start up a little back and forth.
Yesterday, my husband and I went to four museums by our house, and we talked to people viewing art, people working the doors, and as usual, I complimented a few women on their outfits as we passed them walking through the park.
Years ago, I noticed that my dad would talk to everyone he encountered and I found it annoying. Now, I’m just like him. I like talking to people. I especially like it when we share a laugh, a few smiles, or impart some information to each other like a favorite place to shop for sales, etc.
These interactions with people are like little fuel charges in my day. They don’t take energy; they give energy. Unlike how I feel about most social media. So many of the writers I am friends frequently encourage me (and others) to find “your community” “seek out your community” “rely on your community” “build your community,” but the writing communities and communities for women are less than supportive.
Some of the women writing communities I belong to have a call out culture of shame and humiliation if someone makes a mistake regarding a social justice issue. I don’t know how all of us are supposed to learn the ever-changing language, norms, preferences, etc. of different groups if we don’t learn it from somewhere and that learning can mean making mistakes.
It has to be okay to make mistakes without calling the person’s intelligence, character, intentions, etc. into question. I don’t know everything about the LGBTQA community or racism, and I am willing to bet that the people who try to make others look bad so they can look virtuous and knowledgeable and “above it all” don’t know everything about the mental health community. For instance, I bet they don’t know what those of us with a mental illness find offensive, degrading, stigmatizing, etc. Yet, I don’t try to shame people who make mistakes.
Other communities of women are supportive of you only if you have social capital. In other words, if you are a well-known writer, you will get hundreds, possibly thousands, of likes on anything you post, no matter how mundane. But if you are not well known, or don’t have contacts, or something that others feel they want to be a part of you might get one like or two likes and those come mostly from people who know you in real life.
So these communities that we are often told to seek out, join in, get support from are often not welcoming or supportive at all. I have found the same to be true of the mental health community. You would think that I would be a natural fit in the communities based on mental health. I write about severe mental illness; I have lived experience, I put myself and my story out there as an activist.
In the mental health communities, I find that the same hierarchies exist regarding social capital. I also find that in many of the communities, it seems like it is just people looking for attention. They don’t want to start real conversations or help each other to move up, move beyond, challenge, live better, etc. Frequently it is about someone posting a picture (I see this at least twice a day) with the caption, “Everyone says, I am ugly, do you think I am ugly?” Of course, it will be a photo of a young woman in her early twenties that is attractive. I can’t say that no one has ever called these young people ugly, but I can say that this happens so frequently it just looks like a way to get attention and hear people say positive things. Which, I have to admit is sad and possibly does belong in a mental health group. I don’t know.
But for whatever reason, this “find your community” mantra that so many people suggest, espouse, and recommend to others trying to find support, friendship, camaraderie, etc. doesn’t often work, and people are frequently left feeling more socially isolated and alone than they did before. I know I do. I belong to a dozen groups online and don’t feel real support from any of them.
I do, however, feel real happiness from interacting with people in real life. Of course, I love having lunch with friends; I think I am going to love my new part-time job (working with the public) and I like talking to strangers even if I only encounter them for a few short minutes.
If your social media life leaves you feeling hollow, lost, lonely and isolated, know that you are not alone. I feel that way almost every day when I try to reach out. It doesn’t surprise me that anxiety disorders have skyrocketed in this country. When you judge your writing, your creativity, your problems or whatever you post by the number of likes you receive (support you receive) or when people try to shame you for not knowing the latest changes in the world of social justice, you can end up feeling depressed and isolated, misunderstood or not seen or heard.
If that happens to you, try going to the grocery store and ask the cashier what the best kind of ice cream is. They may not know, but they may give you a recommendation that makes binge-watching old episodes of Golden Girls or MASH a Saturday night celebration. In any case, you will have started a conversation and those small conversations, the little ones throughout the day can revive you, lift you, carry you through the downfalls of what people thought would connect the world and open us up to each other in life-changing ways. The experiment of social media has failed to bring us together, people are more lonely and isolated and divided than ever. I’m relying more heavily on the old-fashioned version of social media – talking, and I’ve already discovered two new kinds of ice cream, and that is just the beginning of the benefits.
03 Wednesday Oct 2018
Posted in bipolar, caregivers, hope, mental illness, schizophenia, stigma, Uncategorized
Tags
advocacy, bipolar, brain disease, family members, help, hope, live life to the fullest, mental health, mental illness, mentally ill, schizophrenia], wellness
For the past few years, I have considered myself an advocate for the mentally ill. My advocacy corresponds with my coming out publically with my diagnosis after almost two decades of hiding it.
The problem with focusing on advocacy, writing dozens of articles, writing a blog, and doing many interviews about life with schizophrenia is that having a severe mental illness became my primary identity. Meaning, I focused a good deal of my time on having a brain disease.
I have written over and over again about how I am a wife, daughter, sister, friend, cousin, niece, aunt, writer, etc. and that I have many identities that have nothing to do with having schizophrenia. Although I wrote those words over and over again and said them in interviews just as many times, I wasn’t living that way. I was spending the majority of my time on things that were directly related to my illness.
I have seen many people (way too many to count) who receive a mental health diagnosis become advocates. It seems to be a way to try and make something positive out of something challenging, devastating, difficult, hard, and even at times, humiliating (because of stigma and stereotypes). I think advocacy is fantastic and I am glad that both family members and those with a brain disease are active in this work, but focusing on one aspect of your life especially one that can be as difficult as a severe mental illness is not good for mental health!
Doesn’t that last sentence sound ironic? Focusing too heavily on your mental health or diagnosis is not good for your health. For that reason, I am starting a blog (I’m keeping this one, too) that has nothing to do with the world of mental health (I hope to monetize that blog and make it a small business), and I am going to work part-time outside of the home in a job that is customer focused.
I don’t intend to give up my work as an advocate; I simply plan to start living a more full and varied life. At first I plan to work up to not thinking about schizophrenia for a few hours, and hopefully, after time, whole days will slip by where I don’t think about the world of psychiatry, mental health, stereotypes, stigma, or the world that consists under the branch of mental health.
Because let’s be real, what can be healthier than living such a great life that you forget you have a disease? Ignoring your mental health can be the best thing you do for your mental health. Riddle me this Batman.
24 Monday Sep 2018
Posted in hope, mental illness, relationships, schizophrenia, stigma, Uncategorized
Tags
Art, characters, Hollywood, Maniac, mental health, mentally ill, movies, Netflix, schizophrenia], shows, stereotypes, television
I spent the weekend binge-watching and reading articles written about the new Netflix series Maniac. From Slate to Rolling Stone, none of the writers for the magazines loved it as much as I did and not one of them gave enough attention to, what to me, was the most important, groundbreaking, enduring, and thrilling part of the whole show. The gem I am referring to is, there was a character who has paranoid schizophrenia (like me) and wasn’t a cookie cutter stereotype like almost every other character written into a movie or television show where the writers try to explore one of the most stigmatized and baffling of the mental illnesses.
As someone who has lived with paranoid schizophrenia for over two decades, I wouldn’t say I am an expert, but I do know a thing or two about the disorder that writers usually get wrong, mess up, or rely heavily on worn-out stereotypes like the mass murderer, the genius or the lovable clown.
One of the main characters (Owen) is sensitive, frightened, unsure, intelligent, heroic, courageous and has a sense of integrity and insight into his illness. I have never been more excited or pleased to see schizophrenia on the screen as I was this weekend.
Don’t get me wrong; the writers don’t ignore some of the more troubling symptoms of schizophrenia for example hallucinations, delusions, conspiracies, seeing patterns in random events, and the desire not to take medication. All those details are there, but so is a likable and complex character that people can imagine wanting to get to know it real life.
The show also deals with addiction, borderline personality disorder, loss, grief, and complicated relationships as well as a wide range of emotions. I found it to be a playground of delight for those of us who for whatever reason, through necessity or curiosity, love psychology, therapy and the world of the mind. The scenes are graphic (two are reminiscent of Pulp Fiction) and many are colorful, fantastic and a treat for the eyes.
Maniac is easily my favorite show this year, and it ranks as my all time favorite show that deals in any way with schizophrenia and it may become one of the few shows that I watch multiple times and put on my list of best I’ve seen.
23 Sunday Sep 2018
Posted in articles I wrote, bipolar, caregivers, heroes, hope, mental illness, relationships, schizophrenia, stigma, travel, Uncategorized, writing
Tags
anxiety, Art, artists, author, exercises, healing, heath, hope, mental health, mentally ill, recovery, schizophrenia], self care, self-confidence, wellness, workbook, writing, writing prompts
