Feeling a little down? Read my latest on Psych Central. I get down, too. I hope this helps.
Suffering. I suffer. You suffer. We all suffer. An illness. A loss. Hunger. No shelter. Bombs. Loneliness.
I frequently say, “Why can’t suffering be doled out equally?” Like if you have a severe mental illness you don’t also get a chronic physical illness, or if you lose your child, you don’t also lose a spouse. The world doesn’t work that way, though. And you can’t equate the loss of a child, or war, or starvation to schizophrenia. Suffering is not equal.
My diagnosis of diverticulitis almost two weeks ago, made me momentarily think that I shouldn’t have to deal with physical illnesses and a severe mental illness, too. For a short period, I felt bitter and sorry for myself.
I don’t like feeling bitter, or sorry for myself. Bitterness and self-pity do not suit me or feel right for any length of time, but beyond these feelings is an even more destructive force: fear.
Feelings don’t just fly away. There are times when we need to work to get our feelings on track (I certainly don’t mean you can think your way out of a mental illness, only that you can think your way out of some feelings both negative and positive).
So, I need to find a way back. A way to put my troubles in perspective, lighten my mind, heart, and soul. What I want to be is fearless.
When I was in the emergency room at the hospital, anxiety overcame me. My pulse rate was well above 100. I have felt that same anxiousness since that time. I am hyper concerned about the diverticulitis acting up again and sending me back to the hospital. During this time, I have had back problems for two months. I can lay down and stand up, but I can’t sit. I even stand at restaurants to eat (we haven’t gone out much lately). I am standing while typing this.
But back to fearless. I don’t want to be anxious or afraid anymore. I want to develop a skin of steel. Going to the doctor and hospital terrifies me. I want to overcome that. I want to be strong and brave and courageous. I want to laugh in the doctor’s office and make them laugh, too. I want to whistle no matter what the diagnosis or outcome. I don’t want to be afraid. I don’t want to be concerned.
Concern, anxiety, fear and worry have taken over my life these last two months. I have stopped doing the things that bring me joy because I feel an ache here and pain there and the worry begins. I am concerned by every bite of food I put in my mouth, thinking it may cause another infection in my intestines. I fear sitting down because it can cause my back to hurt for hours or even days.
I know it will take small steps to get me back to the laughter I so frequently enjoy. I know it will take time removed from these illnesses and pains to help my mind heal from their impact. I know all of this, and yet, today, I am going to get out of the house, experience a little living, get on with things.
Today, I step out, slowly, surely, and purposefully. I am re-entering the world. I miss my joy, and I want it back. I may never be completely fearless like I dream and desire, but I’m moving toward that goal – one toe out front – the rest of me is not far behind.
I knew a time when I didn’t consider turning a cartwheel a second thought – my arms outstretched my legs in a V and during those times falling wasn’t a concern. There was also climbing up on a horse and riding it as fast as it would carry me. I bent easily. I twisted with ease. Not so much grace, but flexibility. My body. My wonderful, beautiful, strong, capable, reliable body. Not everyone has a body that moves through the world without a struggle. I did, though, and now it is deteriorating.
My brother once said that Parkinson’s (which his partner has) is a series of letting go – saying good-bye to tasks and skills you once could perform easily and without effort. I am letting go. No cartwheels. No mindless walking where the tree trunks that have pushed up a concrete block in the sidewalk don’t make me slow down. I need a steady pace. No dashing from the shower without the fear of falling. No leaving puddles of water on the bathroom floor.
This body that for over thirty years was ready and waiting to bring a life into this world has even said enough to that as menopause begins to set in. There will be no children feeding on these breasts. No eggs. No build up of the uterine wall and then the shedding of that miraculous lining.
I grow older by the day. My body has become more fragile, less limber. I see some eighty-year-olds running marathons, that will not be me. For the past eight weeks, I have been bedridden because of an injury to my back and during that time I have dreamt of the lack of awareness I used to possess where my limbs and spine are concerned. I have drifted off to sleep imagining that I was floating in water, free from the aches and pains and weight of my out-of-shape body.
I’m not a person filled with jealousy. I rarely feel envy, but to watch the free-flowing movements of abled bodied twenty-year-olds brings a sting of missed opportunity and the lack of gratefulness and full appreciation of what this marvelous home I walk in could once do.
I know that aging brings with it pearls – treasures of a different kind: memories of how things used to be like life before the Internet, before cell phones, before selfies and if you are fortunate enough, age carries with it more wisdom and an eye and heart for what is truly beautiful.
As I let go of physical confidence and strenuous athletics, I keep my heart and mind open for the freedom to visit the past and soak up all that is precious there; grandparents who have passed on, friends who were taken much too young. I can entertain my young self and accept that she was right about some things, especially that the world is magic and she has mystical powers.
Last year, around this time, I picked a word that I hoped would define 2016. I picked the word, “ATTEMPT.” It is written and posted on my wall in black and red ink on the left side of my computer. I have looked at it all year. It has not defined this year at all. I did, attempt to go to work several times. Remember the Amazon Prime Now job I landed and didn’t make it through the first day? There were others as well. Regarding employment, I guess I did attempt to become employed. I didn’t attempt much else, though.
One of my big goals for 2016 was to have an essay about something other than schizophrenia accepted to a literary magazine. Well, I was successful at reaching that goal. I had The Extraordinary Ordinary Death published in Angels Flight: literary west. The essay will be published again in a book by Brightly Press early in 2017.
I think much of this year I was distracted, nervous, concerned, and extremely anxious about the election. The campaign was horrible to watch as the country dove nose first into vulgarity, intolerance, and division. I hated it. I hated watching it, and the leftovers of it, along with the increase in hate crimes and hate speech, fake news, possible corruption, and scandals, has torn a hole in my heart that I am not sure will heal completely. If that hole does heal, the scar tissue it leaves will forever impact the way my pulse beats. Much of what I thought about America may not be true, and because I love this country so much that is like a loss or like surgery, a removal of something dear. I want a breather from bad news, but it seems to come at me daily.
Because my word for 2016 was so inaccurate in defining the year, I wasn’t going to choose a word for 2017, but then I decided to give it one more try. At first, I thought I would choose the word, “RESIST.” I felt like I could work toward resisting intolerance, hate, division, despair and I felt like I could try my hardest to resist my symptoms of schizophrenia. When I say the word, it hits my ear as negative, though. I feel as if the word will make me feel as if I am constantly fighting. I don’t want to spend 2017 pushing against everything, some things, yes, but not everything.
I thought about choosing the word, “HOPE.” Hope is a word that makes me feel like the cliché: light at the end of the tunnel. It brings me thoughts that everything will eventually be okay. Hope is a good word, but I didn’t feel it would push me to act. I need 2017 to be a year of action. I need to do more. I need to work harder at advocacy. I need to work harder at my writing. I need to send more work out and write more letters to politicians and government officials. I would like to have even more of my writing that isn’t about schizophrenia published (this is important to me because it means I can define myself first as a writer not someone with schizophrenia).
For all of these reasons and much more, I am choosing the word, “ACT.” To act is what I hope for in 2017. Do you have a word for 2017? If not, will you join me in ACT(ing) out the steps that make your dreams possible? Let’s ACT out the best people we can be, today, tomorrow and all of 2017.
My head is spinning, and I don’t know which direction to take my thoughts. I have read much more than usual over these past two years trying to educate myself on racial issues, disability issues, LGBTQ issues and many other things that fall under identity politics. I have gone in so many directions by reading that I am at a standstill. I have been silenced for months now. I am afraid to speak up and afraid to have an opinion.
In the current political climate of increased hatred where people of color or people dressed in religious clothing fear harassment and possibly violence, I have watched actions of solidarity (like wearing a safety pin) to identify allies in public, be torn apart by people claiming it is a sign of privilege. People also claim it is too little too late, and generally a stupid idea. People have criticized the act of wearing a safety pin as something that only benefits the wearer making them feel good (like they can pat themselves on the back for not being a part of the problem).
When acts of hatred started to increase with a terrifying frequency in this country I wanted to do something to let people know, I didn’t feel the same way as the people perpetrating these acts. When I heard about the safety pin, I pinned one to my shirt the next time I went out. In a museum, a woman of color also was wearing a safety pin. We spoke about our fear, our sadness, our desire to represent something other than division and hatefulness in the world. We wanted people to know we would not sit idly by if someone decided to harass them. Of course, I didn’t think wearing a safety pin was the only thing I could do or even the only thing I should do. I made a renewed commitment to try and read more essays from marginalized voices. I immediately started calling on my senators and representatives.
Even though I had a wonderfully human moment while wearing the safety pin, I only left the house once wearing one. I read so much criticism and so many people trying to shame people who only wanted to find a concrete way to show support in public that I was afraid to act. I was afraid of offending the very people I was trying so hard to show that I am an ally.
I am not immune to hatred. I have a husband who is brown, and I have a severe mental illness (schizophrenia – the most stigmatized of the mental illnesses). Also, I have spent two years trying to educate myself on the reality of other marginalized groups. In other words, I am not the enemy. I may not always make choices that suit everyone regarding how I go about being an ally, but my heart is always in the right place which is to stay I stand beside and not in front of the oppressed. Can I use more education? Yes, I think that I will need to continue my education until I die. I will never be perfect. I will never be completely “woke” to every instance of racism, homophobia, transphobia, sexism, Islamophobia, etc.
I have read enough articles and essays to be aware that this piece of writing would probably be torn apart by some for what is called “white fragility.” White fragility is the inability of white people to accept the calling out of their privilege. Look, let’s get real here: I see the people like me filthy dirty, with torn clothes, matted hair and yelling in the street. I see the media portrayal of people like me as dangerous serial killers. I see the people like me (who account for half of all of those shot by police) killed by bullets. I see the people like me being warehoused in prisons instead of hospital or community treatment. I see the people like me dying an average of twenty years sooner than their peers. I know and live stigma and discrimination every single day. I may be white, but I am also a part of a group that is dehumanized every single day by huge numbers of people, organizations, the media, etc.
During this election cycle, I have seen derogatory mental health terms used over and over again to describe one of the candidates. I have seen hatred and bigotry ascribed to mental illness (which is so far from accurate). I have seen more use of the words, lunatic, unhinged, crazy, tinfoil hat, etc. It has been widespread and those terms repeatedly being used by many of the same critics of the safety pin and those who would shame others for not being fully “woke” on every issue.
I may always come under fire from those I want to support, but the same is not true for those who want to support me or people like me. If you want to be an ally to the mentally ill, I am going to ask you to keep reading what I and others with a mental illness write. Please keep supporting our voices in publications and on popular websites. Please try to understand us and if you can think of a way to let me know that you care about my experience and safety, I won’t shame you. I promise. I will welcome you as an ally. If you want to wear a safety pin to support people with schizophrenia, I would be thankful, and I might even buy you a cup of coffee. We could talk about the fact that my favorite breed of dog is the French bulldog and how I wasn’t a cat person until I inherited a cat from my brother’s partner who died from AIDS. You know, we could just talk and get to know each other instead of adding to this division we could add building blocks of friendship and humanity. Because that’s what it all comes down to folks – being human- it’s tough, and it’s beautiful, and we are imperfect as hell.
It isn’t always easy to admit, but I am good at some things. One of those things is being honest and not being afraid to fail. When I was unable to be successful at the warehouse job, I wrote about it. I didn’t hide it. I didn’t make excuses. I wasn’t embarrassed.
Today, at the place where my husband volunteers many people asked how it was going with my new job. My husband told them he didn’t think it was going to work out. He wasn’t embarrassed by the truth of what happened, but he wasn’t sure if I would want people to know.
I don’t care if people know that I have limits, that I frequently receive rejections for my writing, and that when it came to this particular job, I couldn’t do it.
I try to do most of the things that other people do, but there are times when I am unable to. Those are the times that I have to admit to myself, “Oh my God, I have schizophrenia.” I know that sounds silly, but it is true. I have symptoms of my illness every day, so it seems obvious that my diagnosis would always be at the forefront of my mind, but it isn’t. When I see a part-time job that sounds interesting, I think, “That would be cool; I’ll apply.” A similar thing happens when I read about an interesting place, I think, “How cool. We could take a trip there.”
I feel like it is both positive and negative that I think this way. On the one hand, I don’t see any obstacles to my life, and at the same time, it sets me up for failure, disappointment, and some major episodes (if my husband isn’t successful in talking me out of whatever it is I am trying to do).
Is it better to see ourselves as completely and promisingly capable or to see ourselves as limited and frail? I think it is better to see myself and my abilities as one big possibility and deal with the failures as they come. I don’t want to feel beaten by this life or this disease. Am I unrealistic? Am I over-reaching? Yes, to both of those things. But as someone who usually thinks the worst thing is going to happen in any given situation, this belief that I am not bound by my illness is almost a relief. It is the one area where I happen to be an optimist, and I’m not going to criticize myself for that.
Somewhere deep inside I must know that when I stop being excited about possibilities when I stop trying, or constantly say to myself, “I can’t do that.” Then schizophrenia has taken over my life and defeated me in a way that will have an impact on my joy, enthusiasm, and creativity.
So, I’m good at failing and not at all ashamed of sharing my failures with others. It isn’t an award-winning characteristic, but it’s something rather unique in our social media (perfection driven) society. I am real and honest, and those qualities are rare today. I’m going to take pride in that – no failure there. Nope. No failure at all.
I failed. I would like to say it is a small failure, but it is colossal. The worst part about it is I thought I could do it. I was excited to try. I had my hopes up that I would be successful. I was ready to put my illness on the back burner and rejoin the workforce.
I didn’t make it through orientation.
The first thing they made me do was to put my purse in a room because they didn’t want me to have it in the warehouse. I knew this was going to be a problem for me. My purse goes with me everywhere; I never lock it up, and I never let it out of my sight. I had two hundred dollars in my purse. I had my house keys and car keys. I had my medication. I had my social security number prominently displayed on my medical card. I had my driver’s license. And I had food; food, that they told me to bring for a snack. I can’t eat food that has been out of my possession because I am paranoid about contamination and poisoning. Food and food issues are one of my most frequent and persistent symptoms.
They took all of us new hires, about twenty of us, into a room. They gave us our identification cards and gave us a tour of the warehouse. While walking the warehouse I smelled all the laundry detergent soaps and other perfumed items. I am allergic to perfumed items, but that isn’t what hit me. I started getting paranoid and anxious about all those smells. Smell is a trigger for me regarding panic attacks and olfactory hallucinations. I was still worried about my snacks because I was starting to get hungry.
Back in the training room, we went over our login for work hours and a safety video. By this time my anxiety was so high and I was hungry, nervous, and paranoid. I told the man at the desk, “I’m sorry this isn’t the job for me.”
“Do you want me to walk you out?” He asked.
“Yes, please,” I said.
He walked me to the warehouse exit, and I asked about my purse. He apologized and led me to the room where I had left my belongings. I went to my car, drove home and had to take an extra dose of medication and have my husband come home to try and get me back to a stable place.
I learned a few things today. The first is I am no longer young. Also, I don’t have the courage and energy and resiliency I had in my youth. My symptoms have gotten worse over the years (I may not be actively psychotic but what I can handle, accomplish and push myself to do is greatly reduced from ten years ago). I will try to make working at home a priority again because I believe it is all I can reasonably handle. Although I believe people with schizophrenia can do anything, I cannot do everything. I have more limits than I imagined. I am not giving up (I will try to find some form of work that I am well suited for that doesn’t require me to have an episode just by going to orientation). People will still hire me, and I may give in sometimes, but I am not a quitter.
Today was a setback, a failure of sorts, for all of us with schizophrenia trying to lead a normal life, but I still plan to find a way to be a good example of successful living while dealing with active symptoms. I know it can be done, and I believe I can do it. I may not be able to do traditional jobs, but I will find some meaningful way to use my time and talents.
I hope you had a more successful day and a better experience than I did, but if you didn’t, let’s agree together not to give up. Let’s keep trying. Failure is nothing to be afraid of, it is not trying that dries us up and kills our spirit. Our spirit is our life force, let’s keep fighting to keep it vital, active and alive.
I am going back to work. I wanted to have writing and working from home be my new career, and I have taken many writing classes and applied to many home-based jobs, but it just hasn’t panned out for me. I don’t feel productive enough working from home, and getting paid writing gigs is competitive and requires a fire and hustle that I simply don’t have.
For the past year, along with writing, I have been applying for part time jobs that I thought I would enjoy and that I had a high chance of being successful doing. I finally found one. I am scheduled for my new employee orientation next Wednesday.
I am excited to go back to work. I will be working twenty hours a week at a fast paced job that is physical. I’m happy that it is physical because it is less likely for anxiety to grab ahold of me when I am zipping around trying to complete tasks.
There are many reasons I am happy to have landed a part-time job with a well-known company, and one of the most important reasons is advocacy. I feel like I am strong enough to work part time and I think that strength and accomplishment are important for others to see. I have worked outside of the home almost all of my adult life (with the exception of the last five years), and I think it will prove to people that stereotypes about schizophrenia are simply not accurate.
I want to succeed at my new job not just for me, but for everyone with a severe mental illness. I don’t want my success to be exceptional, though; I want everyone to know that many people with schizophrenia can write, attend school, and work (some can even work full time although I am sure I can no longer handle the stress or pressure of a 30-45 hour work week).
I have been dealing with personality tests, drug tests, background checks, and other details of this new job over the past two weeks and I have noticed that as the likelihood that I would get the job increased, I became more and more self-confident. Earlier this week, I took a bus by myself to a resort and outlet mall thirty or more miles from my home. I went and spent several hours having fun. It took me two buses to return home, and I did all of that without incident. I was so proud of myself and felt a sense of freedom and accomplishment.
When I was younger, I was so much more independent, fearless, and adventurous. I have lost a great deal of my confidence and strength over the past five years, and I feel like working will help me gain some of that back. Although I have written dozens and dozens of published essays over the past few years, I don’t feel as if I have been contributing or productive on a level that I desire. With a part-time job, I will feel certain that every week I have been productive and contributed to a team environment accomplishing many tasks each shift.
My biggest challenge with returning to work is going to be managing my symptoms, and I feel hopeful that I have the skills and resources to make it through a 4-5 hour shift four days a week. I feel ready to take on the challenge.
As I get ready to start punching a time clock, it is important for me to remember that I am not giving up my dream of writing essays and having those essays published. I am still going to have a couple of free days (down days) every week, and if I can get organized and use my time wisely, I will still be able to produce as much writing as I have been over these past few years.
I am embarking on a new journey, and I intend to keep you all posted about the rough waters, easy sailing, and the direction of the wind. I have the courage to get out there and try again. This trying is an example of the tremendous resiliency of many of us with a mental illness; we do more than put one foot in front of the other, we make huge leaps and hope that we will land in a better spot than the one we left behind.
Last night I was binge watching old episodes of Blue Bloods. My husband and I have always enjoyed the cop show mostly because of its focus on family. I don’t think either one of us will see it the same way again after the writers created a man with schizophrenia who had killed a young girl’s family but became stable (and remorseful) in prison after taking medication.
I can’t tell you how many times a very similar character or killer is part of the story on Criminal Minds, and other detective/cop shows. Will Hollywood never tire of the killer with schizophrenia?
In every beginning writing class students are urged to avoid stereotypes because they make writers look lazy and ignorant. Apparently, writers for Hollywood haven’t received the Composition 101 memo, or they think writing in a killer with schizophrenia is just too appealing to the general public to leave it out. I doubt the latter; It’s simply bad writing done by people who refuse to spend ten minutes researching the statistics regarding people with schizophrenia and instead turn to an old and tired story.
I can’t help but think that if the same writers created a stereotypical character from another minority, there would be some outrage on the part of the public (at least I hope so). But with mental illness, and particularly schizophrenia, the outrage seems to be limited to a few blogs and occasionally one of the larger mental health non-profits will have their members write letters.
How would I like people with schizophrenia to be portrayed? Realistically of course and that requires talking to people who have the disease and asking about their symptoms. Do they hear voices? Do they hear voices continuously or only sometimes? Do they suffer from delusions? If they experience paranoia, how does it manifest in their everyday life? What other symptoms do they have, and how do they manage those symptoms?
I have encountered dozens of people with schizophrenia and schizoaffective disorder, and they can all answer the questions that I just listed. In the disability community there is a saying, “Nothing about us, without us,” and that is how I feel about schizophrenia. If people want to write about it, that is great, but hopefully, they will care enough to do some research to make sure their characters aren’t just the same old stereotypes that are written about frequently now and over the past few decades.
It would be admirable if a few writers would like to do some good, and find out what living with a severe mental illness is like and how difficult it can be without trying to live with the views that they have reinforced over and over again by making us out to be dangerous killers.
We can all agree the pen is a mighty instrument that can be used for the good of others or to harm others. I hope that someday soon in Hollywood, the writers of popular shows will decide to help eradicate stereotypes about schizophrenia rather than perpetuate them. I can only think of one story where the hero has schizophrenia, and it was a blockbuster. The movie is, “Beautiful Mind.”
The success of “Beautiful Mind” should be an indicator that the public is hungry for a different narrative where mental illness is concerned. And the old cliche that says, “there is nothing new under the sun” simply isn’t true especially regarding characters with schizophrenia.