Madhouse Stories

 

No One Cares About Crazy People by Ron Powers, is written by a father whose two sons have been afflicted by schizophrenia. One of his sons committed suicide. The book alternates by chapter between giving a factual history of society’s treatment of the mentally ill and telling the story of his sons’ descent into mental illness. Powers says in the introduction that he initially planned on only writing the factual history of mental illness and leaving his sons’ story out of it. He then realized that he could not tell one story without telling the other. I could not read either of the stories without reflecting on my own or my cousin’s story of mental illness.

***

Last May my cousin Stefan died by suicide. When my mother told me the news I gasped in horror and I cried, and I grieved but the truth was I was not entirely surprised by Stefan’s death. In fact, I had long feared he would die by suicide. Stefan suffered from schizophrenia. I knew the rate of suicide among those afflicted by schizophrenia was high and I knew Stefan had attempted suicide before.

When I told a friend about Stefan’s death she asked if we had been close. We certainly hadn’t been close geographically, as he lived in Romania and I lived in New Jersey. We had not seen each other since I was twelve and he was eleven, when our families spent a vacation together in the mountains of Romania. We never saw each other again after that vacation and for many years we did not speak to each other either. About two and a half years before his death, we reconnected on Facebook. While we didn’t have some of the more traditional markers of a close relationship, we did form a bond over something we had in common: mental illness.  One of the first things he said in his initial Facebook message to me was “I think maybe you and I are the normal ones.” Then he directed me to a song he related to. It was the Gnarls Barkley song “Crazy.”

When Stefan first contacted me, he was in a mental hospital in Romania. I was surprised that he was allowed to use the internet from a mental hospital because that had never been an option for me when I was in mental hospitals. I was even more surprised when he posted pictures of the mental hospital, its surrounding grounds, and the other mental patients with the hashtag “madhouse stories” because in the United States that would be considered a serious breach of privacy. Within the mental health system in Romania, he seemed to have a level of freedom that was unfathomable in the United States. Stefan wondered which system was better and said he would go mad in an American mental hospital.

Stefan read my writing about the time I’d spent in mental health facilities. I’d expressed how isolated and dehumanized I felt by my lack of freedom; I’d been put in solitary confinement for days, I’d lost control over what and how much I ate, I was told that I could not hug my mother when she visited me in my prison. He said I’d been treated like shit and that perhaps I’d been treated worse than he had been. I felt that regardless of how he was treated, he had suffered as a result of his mental illness more than I’d suffered as a result of mine, for he had schizophrenia whereas I had depression. Powers says “But even among the many devastating diagnoses of mental illness, schizophrenia stands unique in its capacity to wreck the rational processes of the mind. It is to mental health as cancer is to physical health; a predator without peer and impervious to cure.” (xv)

I know that many, if not most people with mental illness have been treated much worse than either Stefan or I were. Society is not and never has been kind to the mentally ill. In chapter after chapter of No One Cares About Crazy People, we see just how cruelly the mentally ill were and are treated. We see countless examples of the mentally ill being abused, abandoned, neglected, persecuted, demonized and dehumanized.

We see that contrary to stereotypes of the mentally ill, both of Powers’ sons are kind, caring, charming, intelligent, hard working and talented. I remember how charmed I was by Stefan when he was a child and how devastated I was to learn that he had descended into schizophrenia as an adult. Yet I learned that schizophrenia had not changed his essential goodness and that I was still charmed by who he was as an adult.

A chapter of No One Cares About Crazy People addresses the deinstitutionalization movement. On the surface it seemed like a good idea because many institutions were awful places and this would give the mentally ill a chance at freedom but the movement ended up being a disaster because society failed to provide the mentally ill with appropriate supports in lieu of mental hospitals, so many mentally ill people ended up homeless. Stefan told me he feared ending up homeless one day and could picture himself deliberately getting committed to a mental hospital just so he would have something to eat. Both of us were dependent on and living with our mothers as a result of our mental illnesses and the fear of homelessness has crossed my mind.

I always knew a problem in the treatment of schizophrenia is that schizophrenics often decide that they don’t need to take their medicine because they feel there’s nothing wrong with them but until I read Crazy People I didn’t realize that denial of one’s sickness had a name-anosognosia. Anosognosia can strike after long periods of wellness and compliance with medication. It happened with Powers’ sons and I noticed hints of it in Stefan. He told me he’d been free of symptoms for three months and was preparing to start work again but that he missed his hallucinations because they kept him entertained. He posted statuses and messages that I found alarming, but I felt helpless to do anything about it. Those who are much closer to their schizophrenic loved ones often feel helpless as well.

I cannot begin to fathom the levels of pain Powers must have experienced at losing a son to suicide but losing Stefan was hard for me because I’d lost a flesh and blood connection who knew what it was like to walk the lonely and terrifying road of mental illness. I was furious to learn that the Romanian Orthodox church would not officiate Stefan’s funeral because they considered suicide to be an unforgivable sin. He had died from a very serious mental illness and I couldn’t blame him for his death any more than I could blame a cancer patient for their death.

Powers’ surviving son is doing well now. He has recovered from the worst of his mental illness and in many respects is thriving. I’ve also recovered from the worst of my mental illness and am mostly doing well now but recovery is not an all or nothing linear process and I did end up in the psych ER a few months after Stefan’s death. Once the terror of the episode had passed and I realized I was going to be discharged from the ER and returned to my regular life, a second wave of grief hit me as I thought about Stefan and how he would never have that chance. I do not hear voices in my head like those afflicted by schizophrenia do but as I walked into the sunshine of the hospital parking lot, I could hear eleven-year-old Stefan’s voice ringing out through the mountains of Romania.

In the forward of Crazy People Powers says he hopes you do not “enjoy” the book but are wounded by it. Indeed, it would be hard to enjoy a book that depicts such real and bleak suffering and I did not “enjoy” it, but I am glad to have read it.

The last chapter of the book is titled “Some one Cares About Crazy People” and in it Powers takes a cautiously optimistic tone about advancements in the treatment of and attitude toward the mentally ill. I hope those advancements continue, for the sake of people like Stefan, for the sake of people like me, for the sake of people like Powers’ sons, and for the sake of all those who battle mental illness.

Mental Illness in the Workplace

A few weeks ago I called out sick to work and while there was a physical component to my illness, there was also a mental component. But when my boss asked what was wrong, I described only my physical symptoms and didn’t dare mention my mental suffering. The previous night I’d been considering asking for some extended time off of work for mental health reasons, but I found the thought of  doing so terrifying. I feared I would be judged negatively and would lose my job permanently.

When I talked to my mom about it, she cautioned me against telling my employers about my mental illness, because they might think I was crazy and would hurt the children in my care. She suggested I stretch the truth and say I needed time off for “female problems.” I replied that I found the euphemism “female problems”revolting, and would rather just say I was experiencing mental illness. She said that if I was going to do that, I should specify that I had depression, so my employers didn’t assume I had a scary, dangerous mental illness like schizophrenia.

I countered that most people with schizophrenia are not dangerous and do not harm others and I said how frustrating it was that mental illness was not met with the same kind of acceptance and understanding that physical illness is met with. My mother acknowledged that all of that was true, but felt that since the fact is that mental illness is surrounded by misunderstandings and stigma, I would do well to protect myself from the consequences of that stigma.

A few weeks ago a coworker was overcome by headaches and vomiting in the middle of the workday. She told the boss she would have to leave early. I wish it would be as natural and acceptable for me to tell my boss I had to leave because my mind was hurting from all the bad thoughts and feelings I was having as a result of my mental illness, that continuing to work was impossible because I was incapacitated by all the mental vomiting going on within me.

I had to tell my boss I couldn’t stay late one day because I had an appointment. I wish I could have mentioned it was a therapist’s appointment, as freely as I mentioned previous dentist appointments. My bosses are really kind, understanding people, so it’s possible mention of my mental health issues would be met with compassion, understanding and accommodation, but I’m afraid to take the risk.

It’s a moot point for me right now, because I’ve realized not working is worse for my mental health than working is, but I know that’s not the case for everyone and it might not always be the case for me. So many people are suffering in silence.

I don’t think anyone would blame me for being reluctant to discuss my mental illness with my employer or coworkers, but in being too afraid to challenge the status quo regarding mental illness in that respect, I’m part of the problem and I’m reinforcing the vicious circle of stigma and isolation.

Although I started this blog in large part to speak openly about my mental health struggles, since getting a job, I’ve held back, for fear that my employers or co-workers will stumble across it.

At least I have the courage to post this blog. As a wise man once said, courage is not the absence of fear, but the mastery of it .

And I’ve discovered that for me, wellness is not the absence of mental illness, but the mastery of it.

If Children Were Taught About Mental Health

I work at a daycare center where we have weekly educational themes and one of the themes was dental health. I knew this was never going to happen, but as I sat in the assembly listening to the dentist lecturing the children on the importance of maintaining good dental health, I couldn’t help but wish that the school would also have a mental health week. We could have a psychologist come talk to the children about the importance of taking care of our mental health. Just like the dentist was showing diagrams of teeth on the screen, a psychologist could show diagrams of the brain on the screen. Diagrams of the brain actually have been shown on the screen before, but they weren’t shown to the children and they weren’t about mental health. They were about the plasticity of the brain in early childhood, and the resulting power we have as early childhood educators to shape a child’s learning for life.

It’s known that it’s far easier to learn a foreign language if you start learning when you’re a small child. When I see the kids being taught Spanish, I find myself wishing I’d been taught Spanish at that age, because then I’d probably be fluent in it, and that skill would come in handy in my life.

It’s not just academic learning that has a greater impact when imparted early in life either. It’s hoped and believed that if children are exposed to different races, sexual orientations, gender identities, etc, they will be accepting of those marginalized groups and won’t succumb to prejudice or attitudes that perpetuate stigma.

Maybe if kids learned about mental health from an early age, the societal stigma towards mental illness would decrease, and maybe mental illness itself would decrease. Maybe visiting a therapist would be as customary as visiting a dentist, and practicing self care to protect your mental health would be as customary as brushing your teeth to prevent cavities.

Any preschool lesson plan requires an arts and crafts component. I’m not sure what arts and crafts you could do for a mental health lesson plan. Maybe kids could trace little pink brains out of pink construction paper, and then put rain clouds over them to represent depression.

My idea seems crazy, but it’s the crazy ideas that change the world. I want to change the world for crazy people.

Reflections on 2018

I was looking at my New Years Resolutions for 2018 and I see that I failed miserably at nine out of ten of them. Yet I consider 2018 to be my most successful year ever.

The one resolution I did keep was to go back to college but I did even better than that. I graduated from college. Doing so well on that resolution was part of the reason I did so poorly on my other resolutions. Who has time to read one book a week and write three blogs a week when they have a bunch of reading and writing to do for school? Maybe people with good time management skills do, but time management has never been my strong suit.

I’m okay with failing at most of my goals this year because I achieved goals I was too afraid to set and wouldn’t have thought possible. I was published in Chicken Soup for the Soul and I got a job at a daycare center. The Chicken Soup for the Soul publication was a dream come true and gave me some real bragging rights. Getting a job at a daycare center probably doesn’t sound very impressive, but for me it was a big deal because I feared I was unemployable.

In addition to my paid work, I’ve gotten involved in some amazing volunteer work. In 2018 I started facilitating support groups for grieving children, providing online educational correspondence to prisoners, and blogging for a tiger sanctuary. I also continued with my ESL teaching and tutoring and my blood donations but unfortunately I fell short of my blood donation goal because my last blood donation of the year was a failed one. The phlebotomists tried so hard to get my blood but their efforts were in vein (I just crack myself up sometimes!)

I’m proud of all my accomplishments and they make me happy, but unfortunately I can’t say I’ve been happy overall. New Years Eve and New Years Day were miserable for me and I shed a lot of tears. I suffer over the things I want but don’t have and don’t know how to get. It’s painful to see all my peers getting married and having kids, while I remain a 33-year-old virgin. While I was happy to become a published author, I feel frustrated over all the writing of mine that gets rejected. While I was happy to get a job, I get upset when I’m unable to perform my job tasks adequately and I’m reprimanded by my co-workers.

The last few months of 2018 were an emotional roller coaster. There were periods where I was hysterical and hospitalization/ECT were considered. Then the next day my outlook would shift and I would feel fine. Sometimes changes in my mood would be precipitated by life events, but I think a lot of it had to do with medication changes and the shift in the seasons/weather.

I often feel worthless and inadequate when I compare myself to other people but I’m trying to live by the mantra that comparison is the death of all joy and the only person you need to be better than is the person you were yesterday. I’m certainly a much better person today than I was “yesterday”. Here’s to becoming an even better person in 2019.  I’m sure 2019 will be a rollercoaster as well. May it have more ups than downs and may impossible yearnings become possible realities.

Image may contain: 4 people, including Kira Popescu, people smiling

 

 

On Voting in the Midterms at my Elementary School

On the morning of November 6th, 2018, it is raining heavily. This is a disappointment to me, because I have a mission to complete that day and I want to complete it as soon as possible. I also can’t help but fear that this terrible weather is a harbinger of a terrible outcome at the end of the day. On the other hand, the day of the last major election had started out beautiful and sunny, but had ended in disaster. The heavy rain the following day had reflected the overall mood of the nation.

Finally, at around 2pm the rain starts to let up. I put on a rain slicker, and walk out among the puddles and fallen leaves. It’s time for me to vote.

The path I’m walking is a familiar one. My destination is a place I have been to many times before, a place where I spent many days of my childhood. Yet it has been many years since I’ve set foot in the building.

I can’t help but question the wisdom of allowing the public to vote at an elementary school while school is in session. Ten years ago I wouldn’t have thought twice about such a practice, but a spate of national tragedies has made me see things in a horrifying new light. As I walk to my former elementary school to vote, I don’t know that the next day there will be a mass shooting at a bar in California, but if I’d been told that then I would not have been surprised. Mass shootings have become commonplace and expected. Our country has a major gun problem but most of the politicians in power won’t do anything about it. I wrote to a state representative about gun control earlier in the year and was pleasantly surprised to a get a response. I hope to vote for candidates who will advocate for gun control.

As the stone face of my elementary school comes in to view, so does the tiny Special Services building, which served as the town’s library when I was a small child. I made use of special services all through elementary school and beyond. When I entered Kindergarten, I had a diagnosis of elective mutism. That meant I could talk, and I often did talk with people I knew and was comfortable with, but with strangers or people I wasn’t comfortable with, I would remain silent or near-silent.

It is not lost on me that elective has the same root word as election, that as an adult I am going to symbolically make my voice heard at a place where as a child I often refused to literally make my voice heard.

I follow the signs pointing to the polling location and realize I am standing in back of my first grade classroom. The sign plastered on the window of my first grade classroom says “Vote Here” in English, Spanish and Chinese. Gazing in to the window, I can see the students sitting at their desks. I can’t help but remember that in 2012 a man walked in to a first grade classroom with a gun and murdered 20 children.

While some people have only blurred or faded memories of elementary school, mine are quite vivid. Wicoff School holds a special place in my heart, and I have many fond memories of it, but I also have some bad memories. The worst memories relate to complications from my elective mutism. They relate to times when I was too afraid to speak up for myself, to defend myself, to advocate for my basic needs.

That cluster of desks in my first grade classroom evokes memories of the little girls who sat at the desks that bordered mine, accusing me of cheating on my spelling test by copying their answers. Rather than accusing me directly, they complained about me amongst themselves and within my earshot. I wasn’t really cheating on my spelling test. I had no need to, as spelling was my strong suit, but rather than tell my classmates this, rather than defend my honor, I sat in silence, my head pressed down close to my paper, tears pooling in my eyes.

One time, in first grade music class, I had to go to the bathroom really badly, but I was too afraid to ask the teacher if I could leave the classroom. Finally, after about half an hour had passed, I stood up in front of the class and said I had to use the toilet. The words had barely left my mouth when a stream of urine trickled down down my jeans and gathered in a puddle on the music room floor. I had peed my pants in front of the whole class. I had waited until it was too late to make my voice heard.

****

When I was in Kindergarten, my father became a U.S. citizen. He had immigrated to the U.S. from Romania a few years before I was born. When he achieved his citizenship, my family threw a citizenship party for him in our home, which was located across the street from my elementary school. My father still lives in that house and I visit him frequently, so the elementary school is often on my radar. I see and hear the children playing and shouting on the playground.

My father’s citizenship party included red, white and blue streamers, miniature American flags and a cake that said “Congratulations.” My godmother composed a song about my father’s immigration journey and serenaded him as she played her guitar. I got the impression immigration was something to be celebrated.

In third grade my class went on a field trip to Ellis Island. I proudly pointed out the names of my father and sister on the wall of immigration and I traced over a sketching of them with a pencil and notebook paper. Of those children in my class who had a relative on the wall, none of them had a relative closer than a grandparent, but there I was with a parent and sibling on the wall. I got the impression that immigrants were welcomed in this country with open arms.

The public discourse on immigration has changed now. The president of our country ran on an anti-immigration platform, and he regularly flings vitriol at immigrants. The immigration wall in this country that gets the most coverage is the hypothetical one, which is being proposed to keep immigrants out. As his presidency progresses, the president’s rhetoric against immigrants becomes more brazen and outrageous. Now he’s proposing an end to birthright citizenship, meaning babies born on American soil to immigrant parents who are not American citizens would not be considered American citizens themselves.

I know that Trump’s ire toward immigrants and their families is really only directed at those with dark skin, so people like my father and I are ostensibly safe from its ramifications, at least for now. The Latin American immigrants who I teach ESL to are not so lucky. I hope to vote for candidates who will advocate for immigrants and push back against anti-immigrant policies.

***

I did not vote in the 2008 presidential election, because I was locked up in a mental hospital. By the time I left Wicoff School, I’d shed my diagnosis of elective mutism and learned to talk to strangers but throughout my life, I would be plagued by all kinds of developmental and mental health problems. In 2008 my mental health was at its absolute worst.

“Obama’s going to lose by one vote,” my mom joked, as she visited me in the mental hospital on election night.

Another diagnosis had recently been added to the litany of diagnoses I’d received throughout my lifetime: schizoaffective disorder. My behavior had become so bizarre, that doctors assumed I must be experiencing hallucinations and delusions. I was not. My behavior was a reaction to mental anguish that I could not voice.

The doctors asked my mother if she wanted to become my legal guardian. My mother elected not to do that, but if she had, my right to vote may have been taken away.

***

When I was in elementary school, I had no way of knowing what the world would be like once I reached adulthood. I had no way of knowing that an invention called Facebook would allow me to reconnect with some of my classmates and teachers from elementary school. I had no way of knowing that the day of the 2018 midterm elections, Facebook would also allow me to have an argument with strangers over the importance of voting.

I had no way of knowing that one day my country would elect a president who had less maturity and self-awareness than most of my elementary school classmates and who displayed behavior that would not be tolerated at my elementary school. I had no way of knowing that one day I would see my country threatened by a mainstream agenda that went against all the morals, values, and even the science I was learning in elementary school. I had no way of knowing that one day I would return to my elementary school to vote.

As I step in to the voting booth and use my fingers to light up a vertical row of X’s in the column that says Democrat, I have no way of knowing how the midterm election is going to turn out. But I’m glad I’ve made my voice heard.

Image may contain: Kira Popescu, smiling

 

 

 

 

 

 

 

I’m not okay and I just want to sleep all day

I usually try to put some kind of positive spin on the miserable things I write about on this blog but today I won’t be doing that. Today I’m just going to admit that I’m really struggling emotionally and that I feel really helpless and hopeless.

Where do I begin? Well, I’ll start by saying that despite my very youthful appearance, I’m actually 33 years old.  Wow, that’s an odd preface for explaining why I’m horribly depressed but bear with me. At 33 most people have or have had a job, a partner and/or kids. I know not everyone has all of those things but everyone I know has at least one of those things.

Then there’s me. I have no job now nor have I ever had a job. I’ve only had one boyfriend  in my life and that was over a decade ago. I have no children. I live with my mother and I stay at home alone all day while she goes to work. I have no drivers license and little access to money. These days I spend much of my time either crying or sleeping.

I’m not sure if the intense fatigue I’m experiencing is caused by my depression but my depression certainly makes me want to give in to the fatigue. I know sleeping until 2:30 in the afternoon is not a good thing to do but it seems like there’s little point in getting up when I’m just going to cry and feel depressed and isolated.

Of course if I don’t like my life I should change it but I feel powerless to change it. I’ve worked with three different job counseling agencies that specialize in finding jobs for people with disabilities but none of them have been able to find me a job. I avoid entry level jobs like cashiering not because I think I’m too good for those kinds of jobs but because my disability means those jobs are too difficult for me. There just isn’t a market out there for people who are 33 and have no job experience.

I do volunteer work and I consider it valuable but I don’t care what anyone says, it’s not the same as having a job. I want to have the satisfaction of knowing I can provide for myself financially. I want a place I can go to from 9 to 5 every day and the social connections that come with it. I cannot help but feel deeply ashamed of the fact that I’ve never had a job.

I’m also ashamed of the fact that I’m a 33-year-old virgin but that doesn’t mean I want to hook up with just anyone. I want a life partner but I’m never in situations where I’m likely to meet anyone and I don’t think I’m very attractive as a mate when I’m unemployed and live with my mother. I can’t stand the thought of advertising myself on an online dating site when I have such low self esteem and when I know so many creeps hang out on those sites.

I know that I’d make a terrible mother but that doesn’t change the fact that I desperately, desperately want a child with every ounce of my being. I don’t begrudge anyone their happiness but it’s really hard to log in to social media and be bombarded with baby pictures, pregnancy announcements and birth announcements from my friends, just like it’s hard to listen to people talk about their kids, their partners and their jobs. Why aren’t I good enough to have the things that everyone else has? Why am I so uniquely defective that I cannot achieve even one of those things? It’s horrible to feel so triggered by people just going about their ordinary lives.

I know comparison is the death of all joy and I know everyone does things on their own timeline but I want those things for myself because they sound like amazing, fulfilling experiences, not just because everyone else has them and I’m left with little hope that I will ever achieve those things on any timeline. Fertility doesn’t last forever and society seems to have decided that since I didn’t get a job according to the proper timeline, I’m not worthy of ever having a job.

No one is going to make me feel better by telling me about all the negatives that come along with marriage, parenthood and employment. I’m aware of those negatives. I want those things anyway because the positives outweigh the negatives. I don’t need people who have a job, a partner or kids telling me it’s okay to not have those things. Obviously they wouldn’t really feel okay not having those things because they pursued them for themselves and they don’t know how devastating it is to be my age and not have any of those things. I’m also not under the impression that having those things would suddenly make my life perfect.

I don’t need people affirming my self worth by reminding me that I’m a published author or that I graduated from college or that I’m doing so much better than I was before. All of those things are true and I’m proud of all those achievements but they cannot make up for the gaping hole that is left in my life by not having a partner, a job or kids.  It’s just really, really hard to want those things so badly and feel powerless to achieve them. It’s really, really hard to feel left out of a club that everyone’s a part of and to spend your days in loneliness and isolation. I’d like to think I’m not alone but I feel very alone. I do not know of a single other person in my situation.

I feel imprisoned by a past I cannot change and I can only see my loneliness, my longing and my depression getting worse in the future. My time to have children will run out and the people I care about will die, while I’m left miserable and alone, watching everyone else’s lives go by, longing for a world I can’t have.

Help.

 

Daily Prompt: Courage

Courage

We often think of courage as being exemplified by grand acts full of bravado. We think of courageous acts as the kind of acts that win medals and make newspaper headlines, such as saving a puppy from a burning building or being a war hero.

Yet when I look around me and within me, I see acts that won’t make any headlines or win any medals but are courageous nonetheless.

It takes courage on my part to write about some of the things I do on this blog because I’m making myself vulnerable and opening myself up to criticism (I would like to reiterate that my misadventures in internet forums and depression are not being written in real time. I would not have had the courage to write about those events around the time they were happening.) It takes courage to continue to telling my story when the people who bullied me on that forum continue to try to bully me in response to my writing.

It takes courage to submit my blog posts I write through another site for the approval of clients when I’ve been declined and disappointed so many times (I think it was especially courageous of me to submit a blog post about gay sex toys. That one was accepted.)

It took courage for me to reach out to old and new friends when I’d spent so many years in self -imposed isolation, when I was so afraid of being rejected.

It took courage on my friend’s part to send her daughter to medical daycare for the first time when they’ve never been apart from each other for so long.

It takes courage on her daughter’s part to be away from her mother in a strange environment, to submit herself to needles and procedures every time she has to go to the hospital.

It took courage for me to reapply to college after I’d dropped out multiple times.

It took courage for me to put myself out there in the world and volunteer when I was so afraid of performing poorly, of being judged by the people I interacted with.

It takes courage for the ESL students I volunteer with to sign up for ESL classes because they too are afraid of performing poorly and being judged. It takes courage for them to show up to class every week, when some of their peers are afraid to leave their houses, when they are living under an administration that tells them they are not safe and are not wanted in this country.

It takes courage for me to challenge that narrative I have in my head that I’m a worthless failure who’s a burden and a disappointment to everyone, that I’d be better off dead.

They say courage is not the absence of fear but the mastery of it.

Sometimes just getting out of bed in the morning and facing the day is an act of courage.

When Online is out of line: Girl needs to get a life. Hell, a job

Why did I stay for so long on an internet forum that treated me so badly? It came down to attachment, addiction, stubbornness and fear. Over the years I’d gotten attached to the board and to the people on it, even to the people I didn’t like.  There were probably other places on the internet and places in real life that would have been a better fit for me but I’d grown to know and love this forum.  I’ve never done well with change or goodbyes and I’ve always been slow to warm up to new places and new people.

In my previous blog post about this I explained my philosophy behind the actions I took on that board but when I was in the moment, I was acting not so much on reason but out of compulsion and force of habit. I felt compelled to look for names and news stories to post on that board. When I had a question or wanted advice I felt compelled to ask the board about it.  I felt compelled to share my experiences with the board, to participate in almost all of the conversations that went on there and to read almost everything that was posted there, even if I wasn’t particularly interested in it.

There’s something addictive about that forum, about internet forums in general and about the internet in general. The concept of internet addiction is controversial. It’s not in the DSM and it was first introduced as a joke but these days many people take it seriously.

Addiction is usually thought of in terms of chemical dependence on drugs or alcohol. Addiction to the internet is both similar to and different from addiction to drugs. While there’s no chemical dependency on the internet and you’re not going to die of an internet overdose, being on the internet can activate reward centers in your brain like drugs do and internet addiction has negative effects on your health and your life like drug addiction does.

People with mental illnesses such as depression and anxiety are more prone to internet addiction. I have both depression and anxiety and I’m particularly affected by social anxiety. When interacting with people in real life seems scary and overwhelming, it can be tempting to try to fulfill your social needs by interacting with people online instead. I turned to that forum for socialization and friendship. The problem was that only a handful of the people on that forum were actually my friends and many of them were my enemies. When real life is hard and miserable, the internet can become a form of escapism.  You’ll know from my previous blogs that I went through some really hard times in my life over the past decade.

Some professionals object to characterizing internet addiction as its own disorder because they think its better classified as a symptom of other disorders. I’m reminded of the old “Which came first-the chicken or the egg?” debate.  Does internet addiction cause depression, anxiety and social isolation or is it caused by depression, anxiety and social isolation? I’d say both are true and that it becomes a vicious circle. The internet is a double edged sword and that forum was a double edged sword for me. It both helped me and harmed me.

There are some internet addiction tests available online. Some of the questions ask whether your internet use is interfering with your love life, your social life and your career. In my case there was no love life, social life or career to interfere with.  I had a huge hole in my life and I turned to that forum to fill it. The need to fill some kind of hole in one’s life is often what’s at the heart of any kind of addiction.

Many people on that forum felt that my use of it was problematic and pointed that out but most of them did not do it in a kind or compassionate way. They did it in a cruel and humiliating way.  Their intent was not to help me but to shame me.  Some people do subscribe to the misguided notion that by shaming someone for their problem you will motivate them to make positive changes in their life but that’s not how shame works.  Shame destroys the mechanism in a person that makes them capable of change. It makes you feel hopeless, helpless and worthless. I had plenty of shame in my offline life and combined with the shame I was subjected to online I felt as though I was trapped under a shame avalanche.

One time a woman who went by the screen name of Rudey Bozo (names and screen names in this blog series have been altered to protect the innocent and make fun of the guilty) went on a vicious profanity laden, typo filled rant against me that she ended with “Girl needs to get a life. Hell, a job.” In one of my favorite internet comebacks of all time, a fellow board member, Bernadette, replied “How nice of you to share those opinions. In my opinion you need to get some empathy, manners and a spellchecker.” It was at that moment that my friendship with Bernie really took off.

I had tried to get a job but I had been unable to find one and that left me feeling like a worthless failure so Rudey’s comment was especially hurtful. While Bernie and a few other members said that was a really shitty thing to say, there were also members who said it wasn’t that bad and didn’t qualify as a personal attack because she hadn’t called me a bitch.

Then there were members who acted as though they were concerned about me but I sensed that their supposed concern for me was not genuine. In the same thread in which I was attacked by Rudey Bozo, a member called Maleficent said that she’d been tracking my time online on the board for two days the previous week ( that board had a “Who’s Online?” feature). She’d noticed that I’d been online all day for both days and so much time online was not good for my mental health.  Since Maleficent had a habit of attacking me (and others on the board) with cruel insults that certainly were not good for my mental health, I did not believe she really cared about my mental health. She was just trying to embarrass me. Of course in order to have noticed that I was online all that time she would have had to have spent as much time online as I did but she excused it by saying those were two days when she’d been too sick to get out of bed and she certainly didn’t spend that much time online on a regular basis since she had a job.

I knew that the people who were were being jerks to me wanted me to leave the board. Since they were jerks to me I disliked them and since I disliked them I didn’t want to give them what they wanted. I once told a friend on the board that any reasonable person in my shoes would have left the board a long time ago. Yet I stubbornly refused to leave. If I left that would mean the jerks had won and I couldn’t let them win.

There were a few people who seemed genuinely concerned for me and expressed their concern for me in a kind, compassionate manner. Some even offered suggestions for improving my life such as volunteering to tutor English and offered me helpful links. I appreciated the suggestions and I recognized the wisdom in what they were saying but while kind, supportive friends can propel a person towards positive change, they alone cannot make the person change. Change has to come from within the person themselves and at that point I was too scared and too lacking in confidence.

I’ve never been a very confident person but after the mental breakdown I’ve chronicled in other blog posts, my confidence took a major nosedive. My confidence was lowered even furthered by the  barrage of cruel, insulting comments I was constantly subjected to from my stepfather and from that forum. I would complain on that forum about the way my stepfather treated me and would be told that he was a real asshole. The irony is that the comments he would make to me were similar to the kind of comments that were made to me on that forum and had the same kind of effect on me.

My stepfather also subscribed to the misguided notion that by shaming me for my problems he would motivate me to fix them (I may be giving some of these people too much of a benefit of the doubt. They may have never had any intention of helping me. They may have just been trying to hurt me.)  He would tell me that I was a lazy parasite who contributed nothing to the world and therefore I did not deserve to be treated nicely or to have a say in my life. He would constantly tell me how I was annoying I was.  Annoying was also an adjective often ascribed to me on that forum but my stepfather considered me to be annoying for different reasons than the people on that board did.

As most of you reading this blog know by now, I’m on the autism spectrum and have tics/sterotyped movements. My stepfather was always bothered by this and always got angry when he saw me engaging in them. He told me that it was annoying and unnerving to watch, that it was not normal. If I had to do it, I was only allowed to do it in my room where he didn’t have to see it. He’s not the only person who”s been bothered by my tics/stereotyped movements and he’s not the only one who’s made nasty or awkward comments about it. It’s made me self conscious. As annoyed as people got by me online and as many nasty comments as they made about me, at least online they could not see my tics and thus they could not be annoyed by or make nasty comments about them.

In real life I’ve never been popular socially. There have always been a few people in real life who disliked and said mean things to or about me. However, in real life, I did get the impression that once people got to know me, I was generally well liked. Before my involvement on that forum I had never been targeted or ostracized by such a large group of people. Before it had seemed that liking me and thinking highly of me or at least being neutral towards me were the norm. Disliking me or thinking poorly of me were the exception. After I was targeted on that board, it seemed that disliking me and thinking poorly of me was the norm, liking me and thinking highly of me the exception.

Outwardly I always defended myself against the people who attacked me because I felt they were being unfair and that they had some serious problems themselves but inwardly I suspected they were right about me. While I shared many details of my life on that board, I did not share every detail. Most of the details of my mental illness that I’ve shared on this blog, I did not share on that forum. The things I said and did when I was in the worst throes of my mental illness filled me with intense shame. I’d think to myself “If these people think this poorly of me based on what they know about me, imagine what they’d think if they found out the things they don’t know.”

My friends on that board would validate me and tell me that the people who targeted me were full of shit but remember that my best friend on that forum, Bernadette, was someone who was also targeted and ostracized so I figured that perhaps all those people were right about both of us.

In the end, it was my friends on that forum that made all the abuse I was subjected to on that forum seem worth it. They were the only friends I had. If I left the forum I was afraid I would lose them. The forum was where we had met and where we interacted with each other. It was our common bond and the center point of most of our private conversations. I did not know these people in real life and at the time I was not active on Facebook because I was too ashamed to show my face to the world.

The prospect of trying to branch out and make new friends or rekindle old friendships was too scary and intimidating. If the general forum opinion of me was correct, if I had become annoying and unlikable, than attempts to reach out would likely result in further rejection,humiliation and emotional pain. It wold be even worse than what I experienced on that board, especially if it happened in real life. As horrible as what I was enduring on that board was,  having no friends and no socialization seemed even more horrible.

A few month ago as I sat in Kate’s office with tears filling my eyes,  I said “Those people on that forum were so mean to me and they made me feel so awful. I could have left at any time but I didn’t because even though I had a lot of enemies there, it was also the only place where I had friends.”

Thirteen Reasons Why

Thirteen Reasons Why is a popular and controversial Netflix series that deals with the issue of suicide, which in a way is also popular and controversial. It’s based on the book of the same name.  I’ve read the book and seen the show so I figured I should share my thoughts on them.

Since my reviews tend to get long winded I’m going to start by answering three important questions in the most succinct way possible.

Is Thirteen Reasons Why a good book? No

Is Thirteen Reasons Why a good show? Yes

Does Thirteen Reasons Why glorify suicide? Yes

The story was an interesting one and it held my attention the whole time so I’ll give the book that much but Jay Asher is just not a good writer. It’s a good thing he had a decent editor. At the end of book the original ending of the story before the editor changed it was printed. It was so bad and ridiculous I found myself cringing in second hand embarrassment.

Movies based on books are almost never as good as the books but in my experience shows based on books tend to be better than the books. I wasn’t all that impressed with the book Orange is the New Black (although compared to Thirteen Reasons Why it’s a masterpiece) but I love the Netflix series (although I think it may have jumped the shark at season 5.) The series added all kinds of intriguing details and scenarios that weren’t in the book.

While I wouldn’t say I loved the Netflix version of Thirteen Reasons Why, I did like it.  Just like the Netflix version of Orange is the New Black, it touched on all kinds of details that the book just barely skimmed the surface of. Most notably we got to know the suicide victim’s parents and they filed a lawsuit against the school.

The lawsuit angle raises the question of how much responsibility other people have for someone’s suicide both legally and morally. Obviously the suicide victim is the one who chose to commit suicide and no one else forced them in to it but if you actively encourage someone to commit suicide, it seems pretty clear to me that you’re responsible for their death.  Recently there was a news story about a girl who was charged with manslaughter for encouraging her boyfriend to commit suicide and I agreed with that verdict.

What’s less clear is how responsible you are for a suicide victim’s death if you don’t encourage them to commit suicide but make their life a living hell.  In Thirteen Reasons Why this is what the school bullies did to Hannah. The story also explores the ways in which well meaning people who love the suicide victim can contribute to their death, not only through their actions but through their inaction. Most of the people on Hannah’s thirteen reasons why tapes were people who treated her cruelly but the main character, Clay,  had treated her kindly and cared about her.

There has been much concern that Thirteen Reasons Why glorifies suicide and I’ll get to that shortly but there was another aspect of it I found concerning that I haven’t seen anyone talk about. There’s a scene where Hannah and Clay start making out and Hannah freaks out and tells Clay to go away. He does so. It’s later revealed that Hannah told Clay to go away because she was scared but she really wanted him to stay and it’s suggested that if he had, maybe she wouldn’t have committed suicide. Clay regrets listening to Hannah and leaving the room rather than continuing to touch and talk to her.

I wouldn’t want anyone to get the wrong idea from that scene and think that it’s okay to continue to touch and talk to someone who’s asked you to stop. If someone has asked you to stop touching and talking to them, the proper thing to do is to listen to them, even if you suspect they really want you to continue. In this world of rape culture it is so important to take people at their word and not do anything to them that they haven’t consented to. I’m not going to say that the show glorifies rape or touching people without their consent though because Hannah’s rape and her witnessing of someone else’s rape factor heavily into her decision to commit suicide.

I do think that Thirteen Reasons Why glorifies suicide, not because it makes suicide seem pleasant or admirable but because it sends the message that suicide is a way to be noticed, to get your voice heard, to make the people who wronged you feel bad about what they did, to make them suffer for it.  The people who wronged Hannah didn’t seem to feel bad about what they did or realize how much they’d hurt her until she killed herself. They also were not held accountable for their actions until she killed herself.

For people who are not depressed and who are respected and treated well by their peers, I think the message this story sends is a good one and that it has the potential to influence their behavior in a positive manner. If you hold the social power, you should use that power to be kind to others, rather than to be unkind because you never know what kind of a battle someone is fighting or what effect your actions could have on them. Yet I have serious concerns about the effect this story could have on a depressed, tormented, socially rejected adolescent. Those are the people who feel powerless and this story presents suicide as a way to gain power.

Another criticism I’ve seen of Thirteen Reasons Why is that it portrays suicide as a revenge tactic and that stigmatizes people who commit suicide. There was certainly an element of revenge to Hannah’s suicide but I did not get the impression that was her sole or even her primary motivation for ending her life. Her suicide scene was graphic and maybe if I hadn’t heard about it beforehand I would have been shocked and horrified by it but I’d heard so much criticism of it beforehand that it ended up not being as graphic as I was expecting it to be.

I had a lot of sympathy for Hannah but I did not find her to be an entirely likable character. However, I do not see Hannah’s flaws as a flaw in the story. I don’t think someone needs to be a perfect angel in order for their suicide to be a tragedy or for us to mourn the loss of them. The truth is that if someone is suicidal or suffering from mental illness, there’s a good chance they will behave badly, that they’ll do things that others find hurtful and off- putting. That does not mean the suicidal person is a bad person.

It is often said that suicide is selfish. I don’t think that’s a fair criticism because while it’s true that suicide is devastating to the surviving loved ones, the mind of a severely depressed person can convince them that they are so horrible and such a burden to everyone around them, that they are doing their loved ones a favor by killing themselves.

I can personally relate to this story on multiple levels. I’ve never attempted suicide and I’m not sure that I’ve ever been truly suicidal but I have been severely depressed and had thoughts of wanting to die. I wasn’t bullied or ostracized by my peer group much as a child or an adolescent but I was as an adult.  The bullying did not make me suicidal but it did damage me emotionally. I’m not sure that the people who bullied me realized how badly they were hurting me or that they thought of what they were doing to me as bullying.

I’d like to say that I’ve never bullied or been cruel to anyone but that would be a lie. The truth is that when I was in high school my friends and I played a cruel prank on a girl who was emotionally vulnerable. Our prank did not result in the girl’s suicide but I know that it could have. In fact when the teachers found out about our prank we were required to write a play to show that we learned our lesson and I proved that by writing a play about our prank that did result in a suicide attempt. A few years later there was a news story about an adult who played the same kind of prank on a teenage girl and it resulted in her suicide.

The prank I participated in was not something I ever would have done on my own but people tend to be influenced by their peers and to do cruel things in groups that they wouldn’t do individually.  This was an extensive prank that went on for months and there were times when I did feel guilty about my participation in it but I always brushed that guilt aside. I told myself it was just a silly prank so it wasn’t really bullying and surely it wouldn’t hurt her that badly and if it did she deserved it because she”d been mean to me and she wasn’t a very nice person and….we can always think of ways to try to justify cruel, bullying behavior but at the end of the day there really is no justification for it.

As I said before, you never know the kind of effect your actions will have on someone else, whether they be acts of kindness or acts of cruelty. Something that seems insignificant to you could have a profound impact on someone else. At the end of the day, unless you’re a psychopath, you don’t want someone else’s blood on your hands so play it safe and don’t be an ass.  If you see someone being an ass to someone else stand up to them and reach out to the victim.

As Thirteen Reasons Why proves, cruelty and indifference to cruelty can have devastating consequences. I can only hope that the predominant consequence of Thirteen Reasons Why will be a decrease in cruelty in the real world, rather than an increase in suicide.

Adventures in Mental Illness: Part 11

Although ECT had taken away some of my bad memories, there were some things I would never be able to forget and all the experiences I’d had throughout my adventures in mental illness had left emotional scars on me that were as prominent and indelible as the physical scar my ECT port had left. All the stupid, gross, terrible things I had done and been through had become a part of me. They had affected and altered my self image.

I’ve struggled with low self esteem and poor self image my whole life. These adventures in mental illness had taken away feelings of self worth that I couldn’t really afford to lose. I was now someone who had dropped out of school multiple times, been sent to a residential treatment facility and spent time in the back ward of a mental hospital because I was deemed unfit to fraternize with other mental patients. I was someone who had masturbated in front of other people, spit in peoples’ faces both literally and figuratively and eaten out of garbage cans. I was someone who had been put on antisychotics and diagnosed as being delusional. I had baffled, horrified and frustrated many people including myself. Now I was left living with my parents with no job and no social life. I saw myself as a loser, a failure and a fucked up person.

A few months ago I read a book that pointed out that if your cancer went in to remission, you wouldn’t be ashamed of yourself if it came back so you shouldn’t be ashamed of yourself if your depression comes back after it goes in to remission. It seems like such a simple concept but it had never occurred to me even though I was familiar with the concept of treating mental illness like physical illness.

I was deeply ashamed of the fact that I had thought and acted as though I had defeated my depression for good and then sunk in to the worst depressive episode of my life. I was ashamed of the things I had done during my depressive episode and the resulting consequences of my actions. That shame spread to the things I had done before and after my depressive episode as well. Shame became the predominant theme of my life. It was a destructive force and a major obstacle for me.

On the surface it might seem like feeling shame about one’s life circumstances would motivate you to make changes and improvements but shame rarely works that way. It actually tends to have the opposite effect. It makes you feel hopeless, helpless and worthless, it damages the mechanism in you that’s capable of change.

Depression deprives you of energy and makes even the simplest of tasks seem overwhelming. ECT had lifted my depression and renewed my energy to the extent that it was no longer difficult for me to get out of bed, eat meals or read books but doing things like making plans with friends or looking for a job were still very intimidating.  It meant having to interact with people and for me interacting with people meant awkwardness, humiliation and judgement.

I felt so inferior to other people, not just to people who were in good mental health but also to other people who were mentally ill. It seemed like most people hadn’t allowed their mental illness to destroy their lives the way I’d allowed my mental illness to destroy mine. I knew there were people who had done worse things and ended up in worse situations than I had but I decided those people had some kind of reason or excuse for it whereas I didn’t.

I felt a distinct otherness from the people in my therapy groups and the people I read about in self help books. What did those people know about being a loser and a failure when they had jobs, marriages and children, things I would never have? I bet those people never masturbated in front of other people, ate out of garbage cans or spent time in the back ward of a mental hospital. There was hope for those other people but there was no hope for someone like me.

I fell in to the ‘I’m unique’ trap. All those suggestions for improving your mental health and life would work for other people but they would not work for me because I was fucked up in a way that those other people weren’t.  I thought back to the the time I’d asked Marlene if she’d ever had a client like me and she’d replied “No, you’re pretty unique.”

The word unique is such a double edged sword, especially when it comes to mental illness.  We’re all unique, just like everyone else. We shouldn’t judge anyone until we’ve walked a mile in their shoes and for the most part we have not walked a mile in another person’s shoes even if we suffer from the same mental illness they do because everyone’s circumstances are different.  Yet at the same time we shouldn’t get so wrapped up in the idea of our own uniqueness that we decide no one else can possibly understand us, relate to us or help us.

Mental illness often gives rise to a host of other problems, which are exacerbated and reinforced by the mental illness and vice versa, leaving the sufferer feeling trapped in a vicious circle. I’ve been on the autism spectrum my whole life and I’ve suffered from mental illness for a good portion of my life. I’ve heard of many people with one or both of those conditions being horrifically bullied throughout their childhoods and in to adulthood. Although there had always been a few people who disliked me and treated me cruelly, for the most part I had escaped bullying. That changed in the aftermath of my mental breakdown. I was cyber bullied by a large group of people on the internet and emotionally bullied by one person in real life.

My depression caused me to behave in ways that others found annoying and off-putting, as did my autism spectrum issues, both of which interacted with each other. My situation also left me vulnerable and made it hard for me to get away from the bullies. I knew that the things the bullies were saying to and about me were wrong and that they had issues of their own. Usually when they attacked me I outwardly defended myself but inwardly I suspected they were right about me (I’m vagueblogging about the situation now but the details will be revealed in time.)

There was also other life crap that got in my way. I experienced loss. My stepbrother died tragically and unexpectedly, my dog died tragically and unexpectedly, my grandmother died. I moved away to another state thinking I was getting away from a toxic environment and a month later I had to move back. Those situations weren’t caused by my depression but they made it worse.

I had good people in my life who encouraged me and tried to help me but they could only do so much. They could lead me to water but they could not make me drink. I had to take certain steps that I was unwilling or unable to take. I was encouraged to reach out to people, to reconnect with old friends and make new friends. I refused. A few of my old friends tried to call me and e-mail me but I did not respond. It had nothing to do with them and everything to do with me. The thought of having to explain my humiliating life experiences and circumstances to them and compare it with their much more positive experiences and circumstances was too much for me.

The thing about depression is that everything you see, hear and experience while depressed will be filtered through the lens of depression. If you suffer from low self esteem, everything you see, hear and experience will be interpreted to reflect the way you feel about yourself.  When people would tell me I was smart, funny and beautiful my mind would tell me that if I was smart, funny and beautiful my life shouldn’t have turned out as badly as it did and it must have turned out this way because I was such an awful, fucked up person.

I was still relatively young so I didn’t need to think my life had ‘turned out’ any particular way. I was told to let go of the past, to focus on the present, to create the future I wanted for myself.  I just couldn’t seem to do that though. Along with sadness and shame, another theme of my life was regret. I regretted so many of the decisions I’d made in the past. I tortured myself trying to come up with logical reasons for why I did what I did but the only reason I could ever come up with was that I was mentally ill.

All I could focus on were the bridges I’d burned and the opportunities I’d lost. I’d fantasize about what my life could have been like before if I’d made different choices and what it would be like now. I did not want to work with the circumstances I had now to build a future for myself because I was sure that now I could not create a fulfilling life.I wanted the life I could have had. I guess that by refusing to move forward with my life, I was in a way denying the painful reality of it and by dwelling on the past keeping alive the fantasy that it could be changed.

When I went back to school I did not feel proud of myself . Instead I was ashamed of myself for dropping out in the first place. I was embarrassed that I had been to three different schools on four separate occasions. Being back on the campus of the first college I had attended was a painful reminder of the ‘college experience’ I had ‘thrown away.’

One of the classes I took was Theories of Psychotherapy and one of the assignments for the class involved writing a personal essay. In my personal essay I shared some of the details of my adventures in mental illness and my struggles with it. When the professor handed back the essays, he’d written on mine “Finding happiness isn’t easy. It’s a process. Now begin the process because you do deserve it.”

I wasn’t sure I did deserve it.