I hope you will check out my latest article on Psych Central. Let me know if you use mental health and mental illness interchangeably. I know I do and it is confusing!
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.
Content Warning: Language
I walk downtown to a busy Starbucks to wait for my husband to finish his work day so we can walk home together. On my trip to the coffee shop and while I am sitting at a table, I see at least a dozen homeless people. Some of these people are talking to voices only they can hear, waving their arms and cursing at no one in particular. I want to look away but I can’t.
While I sip my coffee, I stare at one woman who appears to be in her sixties. She is wearing a wool coat and gloves on a warm Southern California day. She walks up one side of the sidewalk and then back again, repeating her steps over and over. She looks as if she is pacing. She begins to yell, “Fuck you!” as people pass her. “Fuck you!” She screams again and again.
I don’t know if she is directing her words at the people on the street passing her or if she is yelling at a voice in her mind. I am almost certain she and I share the same diagnosis. Schizophrenia is not hard to recognize when you have lived with it intimately for over two decades. I don’t approach her. I sit, watching, thinking to myself…no, knowing, that she could be me- a medication that didn’t work, a divorce, the death of a parent, so many things could have placed me in her shoes on this street, yelling.
In contrast, I have a nice condo, in a good neighborhood, and a husband with a job. I try to contribute when I can by writing essays, articles, blog posts. I wouldn’t say life is easy for me, but in comparison to this woman before me?
I work hard for the level of functioning I enjoy. I take my medications with three hundred calories of food twice daily. I try to keep my weight down to avoid severe side effects like diabetes and high cholesterol. I keep pills with me all the time for the break-through of unexpected symptoms. I battle alongside my husband to control paranoia, lack of motivation and anxiety.
I can’t help but think, with the right medication, the right support, and if the opportunities for treatment existed, a network of support was available, would this woman before me fight as hard as I do? I believe she would. I think most people with schizophrenia would. Voices can be terrifying and torturous. Stopping the assault of voices on the mind is like salvation of the religious kind. The silence seems so life altering, in fact, it is life altering.
I want to do something for my fellow-sufferer out in the street, but I know she needs more than a phone number, a five dollar bill, or anything else that I could offer, except understanding and compassion. I have those two things in abundance as I watch her continue to yell, “Fuck you!” and point her boney arms in random directions. She could be cursing me above all others because I’ve been so close to where she stands and still can’t figure out the right thing to do.
Yesterday I wrote a blog post about what schizophrenia is and what it is not. This post is similar but rather than look at the personal (stories about me) I am looking at how people view severe mental illness on a national level.
This election cycle was difficult for many people to get through. The things that we had to listen to on the nightly news were vulgar, intolerant and upsetting in so many ways. We experienced Islamophobia, xenophobia, homophobia, misogyny, mocking of the disabled, and then those of us who have a mental illness experienced something else: we experienced more insults and misunderstanding than I have encountered in the twenty plus years since I received a diagnosis.
Insulting language about mental illness was everywhere I looked. It filled up my Facebook feed: lunatic, unhinged, crazy, bat shit crazy, insane. It was in mainstream newspapers and used by pundits on the nightly news. Derogatory language about mental illness had become the norm for those who normally fight for marginalized people.
Seeing so much reference in a negative way about mental illness was startling and painful enough, but the reasons why people were using that language was even more alarming. People were confusing intolerance, hate speech, aggression, bigotry, misogyny, sexual assault and all manner of other disturbing things with symptoms of mental illness. None of those things have anything to do with mental illness.
I have symptoms like, depression, anxiety, auditory hallucinations, tactile hallucinations, visual hallucinations, social anxiety, lack of motivation, and isolating socially to name a few. As you can see, none of the things I mentioned as symptoms have to do with discriminating against, disliking, or being intolerant of other people. Also, none of them have to do with aggression.
What people did, millions of people, during this election is make being a racist, sexist, etc. into the definition of mentally ill and those things are not connected. This climate of inappropriate and inaccurate cause and effect impacted me so much I am only now able to write about it. Since the election, I have only seen this addressed once in an article on a news outlet like Huffington Post (I think that is where it was but I can’t be sure).
I felt as if all the social justice people completely abandoned the mentally ill and the nation decided that whatever unfavorable characteristic someone displayed it was due to mental illness. It was as if the title mental illness had become a dumping ground for all the things people find distasteful in others. We became not the trash collectors, but the trash.
Since so few people recognized that this was happening, and did nothing to change their language, I am sure that we will see much more of this over the next four years. The progress the mental health community achieved over the past few years in educating people about mental illness may very well be eroded by the current political climate. I hope the damage is not severe. Those of us who have once again been characterized by the media and the public as “bad” people will suffer the consequences of this latest wave of ignorance and misunderstanding.
It’s Monday. I spent a busy weekend with my husband and had relatively few symptoms. In fact, other than some fear/paranoia, about the use of an ATM I was symptom-free. Because I had so few symptoms, I wondered, not for the first time, what part of me is my illness and what part of me is my character or personality?
In times when I am not psychotic or having a panic attack, I think what people see from me mostly is my personality and not my illness (even though they may think everything is my illness). Several things happened this weekend that made me think, even without schizophrenia, I am an imperfect person.
My husband and I went to a festive open house on Friday night. There were many galleries open, and people were ice skating to holiday music. A three-story Christmas tree lit up the courtyard, and we were in search of pumpkin pie. I love pumpkin pie and I didn’t have any for Thanksgiving, so I wanted to make sure I had a piece before it disappears from menus. I was walking around the corner of a sidewalk, and six young men came in the opposite direction, one of the men slammed into me with half of his body. I yelled, “OWWWWWW!” He didn’t stop. He didn’t look back. He didn’t say excuse me, or that he was sorry.” In my anger, I yelled, “F****er!” Immediately after I yelled it, I regretted it, not because I was worried about his feelings but because I was worried that the six young men might decide to start a fight with my husband. Obviously, there are times, when my anger gets the best of me, and I don’t have the best judgment. This incident is an example of my personality and not my schizophrenia, and I find it to be something I should work on.
On Saturday night my husband and I went to a holiday celebration that attracts over 350,000 people over two days. It was extremely crowded. There were times when people would stop in the path of where others were walking, and I would get frustrated. During one such time, I said quite loudly, “Seriously?” And a woman looked back at me with such a hateful look. When I got past the people stopped, I saw a person in a wheelchair. I felt terrible because it must be so difficult to want to attend a holiday function that is not easily accessible for the disabled. Also, I never want a person in a wheelchair to feel like they are a burden in any way. I felt bad about my impatience. This incident is again part of my personality and not my illness.
There were other things that happened over the weekend that I felt good about and they too have to do with my personality and not my illness. I let a young mother go in front of me in a long line in the restroom so her little girl wouldn’t have to wait any longer. I offered to share our table in a very busy outdoor beer garden with a couple that I saw walking toward the table at the same time we were, but I managed to get there first. The couple did share our table, and we had a nice conversation. We also told a group of young women we were leaving in advance so they could secure the table and not have to stand around.
I once read that in a relationship if you criticize your partner you need to say one thousand nice things to them to erase the impact of the harm you caused. I wonder if the same is true in the world: if we act negatively, hostile, impatiently or rudely to another person do we have to do one thousand nice things to set the world right again? I think maybe we do.
After this weekend’s events, I am going to be working on completing one thousand nine hundred and ninety-seven random acts of kindness to put the world right again, and it all has to do with my personality and not my illness. My illness isn’t to blame for everything; I am responsible for so much of what I think, say and do just like you.
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.