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.

Adventures in Mental Illness: Part 7

The doctors at Payne Whitney ended up diagnosing me with Schizoaffective Disorder. Schizoaffective Disorder is ‘a mental disorder in which a person experiences a combination of schizophrenia symptoms such as hallucinations or delusions, and mood disorder symptoms, such as depression or mania’ (Mayo Clinic). I think that was a pretty silly diagnosis for them to give me considering my reality testing was perfect and some of the ‘psychotic’ symptoms they were observing could be accounted for by my developmental disability but I guess they felt they had to settle on a diagnosis and Schizoaffective Disorder was the best they could come up with.

Mental illness on its own can be hard enough to understand and autism spectrum disorder on its own can be hard enough to understand. Put the two of them together and people are often completely baffled even though it is common for the two to go hand in hand. The fact that the doctors were so convinced that I was experiencing hallucinations and delusions convinced me that they did not understand me, although I could hardly blame them for not understanding me when I didn’t even understand me ( I may have expressed those thoughts in previous episodes of this mental illness saga but now that we’re on episode 7 it’s hard for me to keep track of what I’ve said and I feel like they’re thoughts that are worth repeating anyway.)

Years later a friend asked me if I found my stay at Payne Whitney to be helpful. I think it was helpful to me only in the sense that it was a holding zone. Since it was clear that the doctors there could not understand me I certainly didn’t think they could help me.  They were not giving the kind of help I needed and I was not in a frame of mind in which I was receptive to help so there wasn’t much hope of me making progress.

As I said, I don’t remember much of anything that happened while I was there so it’s possible there were individual therapy sessions in which caring therapists tried to get to the heart of my issues and my mind just has no record of it, but I get the impression the doctors spent a lot more time talking about me than talking to me. I got the impression that I was more a patient/case study to them than a human being they cared about. For me and I’m sure for many others as well knowing that the person who’s assigned to help you really cares about you is the first and most important component necessary for healing.

I suppose it’s silly and unrealistic of me to expect a warm, caring atmosphere in a mental hospital but some mental hospitals are better than others. Some mental hospitals do provide individual therapy with caring professionals and encourage the loved ones who visit the mental patients to hug and touch them.There may have been good reasons behind Payne Whitney’s no touching policy but I really have to question the wisdom of enforcing such a policy. Hugs and loving touch have been proven to be beneficial for mental health and a source of comfort to those who are suffering.  Being deprived of loving touch has been proven to be detrimental to one’s mental health. I do realize that there’s no one size fits all rule and that some people are bothered by being touched but it seems a shame to have a blanket policy that’s harmful to the many people who want and need to be touched.

Another thing I have no memory of is ever going outside. Again, it’s possible it did happen and it’s possible it wasn’t feasible to let me outside but being deprived of fresh air cannot be good for the mind, body or soul.

I also have to question the wisdom of giving me antipsyschotics. I was being given a potent drug with adverse side effects intended to treat a disorder I did not actually have. I’m not going to jump on the “Big pharma is evil and destroying peoples’ minds and bodies for the sake of profit” bandwagon because I think psychotropic medication has helped a lot of people and I have certainly been helped by some of the medications I took but this was an example of medication being prescribed inappropriately.

I was talking to a relative of mine in Europe who had a very different experience at a mental hospital. His was a mental hospital where the patients were allowed to roam the grounds outside, use the internet, take pictures and have sexual relations. My relative was wondering which system was better. I don’t know which system is better but I do know that the state of mental health care in the U.S. is deeply flawed and broken. What I went through at Payne Whitney and at the treatment center I was is not unusual and it’s not one of the more horrifying stories out there.

I was in Payne Whitney for about six weeks but you could have told me I was there for six days or six months and I wouldn’t have known the difference. I had lost all sense of time. When the doctors decided to release me it wasn’t so much because I’d improved as because they didn’t know what else they could do for me.

They weren’t sure what should be done for me after I was released either. There was talk of sending me to a day treatment program and there was talk of sending me to a program for the mentally ill that was located on a farm, in which the residents helped to take care of plants and animals. I love animals so the farm program seemed like a good option for me but I was deemed to be too unstable for it.

Just like I have no memory of the day I entered Payne Whitney, I have no memory of the day I was released. I do know that the doctors said there was a good chance I would end up having to return at some point.

Adventures in Mental Illness: Part 6

I know that the Payne Whitney psychiatric clinic was named after a man named William Payne Whitney and I know that Payne is not the same as pain but I can’t help but feel that it’s not the best idea to have a name that sounds identical to the word pain in a hospital’s name. It’s inevitable that pain will be experienced in a hospital but this is an instance where we don’t need truth in advertising.

At the Payne Whitney clinic I experienced some of the worst emotional pain of my life. I was enveloped in a cloud of intense, non-stop, relentless, all encompassing misery.  I was overwhelmed with sadness, grief, fear, guilt, regret,anger, loneliness and shame.  I felt hopeless, helpless and worthless.  While I experienced all these intense negative emotions, I also experienced a kind of emotional numbness.  I shut down emotionally as a form of defense and as a coping mechanism. I went in to zombie mode as a result of the emotional trauma I was experiencing and as a result of the side effects of the anti-psychotic medications.

I had no motivation to get better because there was no getting better as far as I was concerned. I did not deserve to get better and I was not capable of getting better. This was the end as far as I was concerned. Maybe I would spend the rest of my life in a mental hospital. Maybe I would be released from the mental hospital but if I was not imprisoned by the physical walls of a mental hospital, I would be imprisoned by the metaphorical walls of my mental illness and all the horrible mistakes I’d made. I just couldn’t see myself recovering from something like this.

A few years ago an ex-boyfriend who was angry at me had referred to me on the internet as a piece of human waste. At the time I thought it was a cruel and ridiculous thing to say but now I felt like a piece of human waste.

I’m known for my good memory but I don’t remember much about Payne Whitney. The only thing I remember about the other patients was that there were a lot of Hasidic Jewish men with hats and curls on the sides of their heads. The only interaction I remember having with any of the doctors or therapists there was when a social worker told me that during group therapy she’d seen me picking my nose. When I just shrugged it off she said “Here’s a word of advice: Look around you and observe what other people are doing. If you don’t see other people doing that you shouldn’t be doing it either.”

I have no memory of how I filled my days at Payne Whitney. I just remember the visits my mom made to me at night and a few visits from my dad as well. I remember on election night my mom teased me that Obama was going to lose by one vote. I have this memory of my dad spoon feeding me green beans. That memory doesn’t make much sense because I don’t like green beans and I’m capable of feeding myself but I suppose I was so out of it that I was having trouble lifting a spoon to my mouth and that I had become indifferent to assaults on my taste buds.

One time when my mom visited me she was so stressed out that she started having heart palpitations and asked one of the doctors to examine her. When she would try to hug me goodbye at the end of our visit a staff member would step in and say “I’m sorry, we don’t allow physical contact here.”

My mom brought a friend along on one of her visits. At the end of the visit her friend burst in to tears. “This place is so horrible and it’s so horrible seeing Kira like this” she sobbed.

At one point my mom was offered the option of signing away my rights as an adult and becoming my legal guardian but she did not do it.

I remember getting phone calls from my sister and my godmother. I remember fearing that my sister would speak harshly to me and criticize me but she just said compassionately “I understand that you’re going through a rough time right now.”  I remember struggling to think of something to say to my godmother before asking her how her baby was doing. When I had first dropped out of school and my godmother was trying to talk some sense in to me I had helped bathe that infant. Now she was walking and talking.

“The doctors are having trouble diagnosing you” my mother said to me on one of her visits.

“Why don’t they diagnose me with Crazy -NOS (crazy, not otherwise specified)?” I quipped.

We both laughed.

“If you ever write a memoir, Crazy-NOS should be the title”.

At the time the idea of writing about my life seemed preposterous because I would never want to share something so shameful with the world but I agreed that if I ever did write about it I would call it Crazy-NOS.

Adventures in Mental Illness: Part 5

I wasn’t just going to the mental hospital, I was going to the back ward of the mental hospital. It was decided that my behavior would be too upsetting to the other mental patients so I was placed in solitary confinement. If I though the stabilization house was bad, this was much worse. At least in stabilization I could talk to the staff and the other residents who were there with me. At least there were occasional scrabble games and walks outside. Here there was nothing. I was confined in one room all day and the only times anyone at the mental hospital interacted with me was when they gave me my meals.

Suffice it to say, I was completely and utterly miserable. If only I was as crazy as everyone thought I was. Actual psychosis would have been almost welcome at this point. I would have given anything to escape the horrifying reality of being all alone in the back ward of a mental hospital.I felt as though I had hit rock bottom and would never be able to recover. I had been deemed unfit to fraternize with other mental patients. It didn’t seem like there was any hope for someone like that.

When I talked to my mother on the phone she told me I had been kicked out of Innercept because they had decided my behavior was too upsetting to the other residents. She had been looking around for another mental health facility to put me in and had tried to get me in to McLean mental hospital. I was familiar with McLean because I had read/seen Girl Interrupted (If only real life mental illness were as glamorous as Winona Ryder and Angelina Jolie made it seem.) McLean wouldn’t take me though. They said they had no place to put me. My behavior meant that I could not be put in the main ward with the general population but they couldn’t put me in the ward for the psychotic patients either because my reality testing was perfect.

“I want to die!” I cried in to the phone.

“No, honey bunny, you don’t want to die. You want to get better.”

“I can’t get better. I  want to be euthanized!”

Euthanasia did seem pretty appealing at that point. If only that guy who brought me my trays of food would also bring me a syringe that would put me to sleep forever. If only he could inject it in to my arm so that I could be enveloped by a blissful fog that would permanently release me from my physical and emotional prisons, from this hell on earth, from this world of intense, unrelenting psychological suffering.

One of the worst feelings I’ve ever experienced, one of the worst feelings in the world, the kind of feeling I wouldn’t wish on my worst enemy was that feeling I got every morning when I woke up in the back ward of that mental hospital. It was a feeling of horror, a feeling of unreality as I had to acknowledge over and over again that this was not all a bad dream. This was my truth, this was my life, this was what I had done to myself.

Eventually my mom called me to tell me that she was flying down to Idaho to get me. She had been told that if she brought me to an emergency room in New York she could probably get me admitted to a psychiatric hospital called Payne-Whitney.

Before my mother arrived at the mental hospital Marlene came to pay me a visit. The first thing she said to me was “So, you’re in the back ward of a mental hospital…” The last thing she said to me was “So, when I call your mom a year from now is she going to tell me you’ve been permanently locked up in a mental hospital?” I got the impression Marlene wouldn’t be all that surprised or devastated if that ended up being the case.

When my mother arrived at the mental hospital Marlene informed her that Innercept would be sending her a bill for the mattress I’d destroyed with my vomiting and diarrhea. And with that I was off on the next leg of my adventures in mental illness.

Adventures in Mental Illness: Part 2

When I returned to New Jersey I was sent to a mental hospital. As part of the admission process a nurse asked me a series of questions. One of the questions she asked was “Are you sexually active?” When I replied that I was not she said “Why aren’t you sexually active? You’re 22 years old and you’re very pretty. You should be having sex.” Sex was the least of my concerns at that point but at that point I could also hardly be bothered by the inappropriateness of such a line of questioning.

When I was admitted I encountered some familiar faces. A girl who was my classmate in the class for the emotionally disturbed I was in in high school was there as a fellow mental patient. I asked her why she was there and she said she was depressed because she had headaches that never went away. I asked her if she’d seen our teachers since graduating and she said no, they’d given her an invitation to an alumni event but they’d forgotten to put the date on it. Even in my distress I could laugh at that because it was so like them. I also encountered a familiar face in the social worker I was assigned to.

“Hi, Kira. Do you remember me from the last time you were here? I remember you.”

“Yeah, I remember you.” ( I have a really good memory so I didn’t just remember her. I also remembered her name, various facts about her and various things she’d said to me.)

“So what’s going on?”

“I got depressed, I dropped out of school and now I’ve ruined everything.”

“You haven’t ruined everything. You can still go back to school.”

“No, it’s too embarrassing. I can’t face my friends.”

“Come on. If one of your friends took a mental health withdrawal would you still be friends with them?”

“Yes, but it’s different with me. I’m a loser.”

“The last time you were here you told me you were having some social issues but you are not a loser.”

“Yes I am. I make bad decisions.”

“We all make bad decisions sometimes.”

“But I make really bad decisions. Not taking my medication was a really bad decision.”

“Yes, I would agree that that was a bad decision.”

“My whole life is full of bad decisions.”

“You have a lot of life left to live, more than you already have lived.”

“That is a horrible thought.”

The next day I met with the psychiatrist as well. I told her how upset I was about the bad things I’d done.

“You haven’t done anything that can’t be fixed. You need to stop blaming yourself.”

“Who else am I going to blame? God?”

“Kira, give yourself some credit, you stayed out of the mental hospital for years” the social worker interjected.

“But I was in special programs.”

“You have an illness.”

My mother, my godmother and my brother visited me in the mental hospital. They all told me that things would be okay, that I just needed to go back to school. I was fixated on how I’d made a horrible mistake, how embarrassed I would be to show my face again, how I couldn’t go back because things just wouldn’t be the same for me.

“So your attitude is ‘I can’t have everything I want, so therefore I’m going to have nothing?’ that makes no sense” my mother said.

She was right that that line of thinking was not very logical. As you’ll see later, in trying to avoid slight embarrassment, I was setting myself up for all kinds of horrible humiliations. In most respects I’m actually a very logical person and in general I’m not someone who’s easily embarrassed but mental illness can make you think and behave in ways that are out of character.

A few days in to my inpatient stay my social worker said to me “You need to shower and brush your hair. This is not a place for people who can’t take care of themselves.”

Around that same time the hospital psychiatrist said to my mother “Kira is in a very bad state right now. At this point I don’t think she’s going to be able to recover with medication and therapy alone. Her brain needs a reset. I suggest ECT.”

ECT, short for electroconvulsive therapy, is a procedure used to treat depression and other mental illnesses. It involves sending electrical currents in to the brain in order to produce a small seizure. It is controversial, has a heavy stigma attached to it and some potential negative side effects. It has a long history of abuse and improper use. It has been negatively portrayed in the media and in fiction. It is surrounded by fear and misinformation. Some people regard it as barbaric and dangerous. For those reasons my mother said she did not want me to undergo ECT at that time. She regrets that now.

My inpatient stay was followed by outpatient group therapy. The therapist that led the group said that the things I said to the other group members were so wise and compassionate, she only wished I could be that way with myself.

I also saw another psychiatrist. When he heard that I’d dropped out of school, he gave me a puzzled look and said “You were doing so well. Why would you do that?”

“I don’t know” was my response.

When someone behaves in a bizarre, erratic, maladaptive way, it is often expected that they will be able to explain why they behaved in such a manner. After all, they were the ones who chose to behave like that. The truth is that the brain is an organ just like the heart, the liver and the kidney are organs. Just like the heart, the liver and the kidney, the brain is subject to all kinds of biological functions and dysfunctions, the mechanisms of which the owner of those organs is not always privy to. Sometimes asking a mentally ill person why their brain went haywire is the equivalent of asking a physically ill person why their heart, liver or kidney went haywire. A lot is said about people who are not mentally ill being unable or unwilling to understand those who are mentally ill but sometimes those who are mentally ill have trouble understanding their own mental illness.

The general lack of understanding that surrounds mental illness means that a mentally ill person is bound to hear some rude, hurtful, insensitive comments about their mental illness. Sometimes these comments are well intentioned and sometimes they’re just fucking mean. I would put comments like the one made by the nurse who admitted me to the mental hospital in the former category but unfortunately I also had people in my life who made comments that fell in to the latter category.

One person in particular said that he didn’t believe that all my problems were caused by my disability because there were people with no arms and no legs who made lives for themselves, that his son was kind of a disappointment but I was more of a disappointment and that he would go on having fun with his life while I was locked away in an institution.

All of those comments involved comparing me to other people. Making comparisons to other people is usually pointless. It usually just ends up hurting rather than helping in any way. Temple Grandin is usually the example that’s trotted out when one wants to inspire or shame someone on the autism spectrum but this guy was bringing up all those wildly successful people with no arms and legs. I have no idea what purpose telling me I was more of a disappointment than his son was supposed to serve other than to make me feel bad and I was feeling bad enough as it was.

As for the institution comment, my mother was not ready to institutionalize me but it was becoming apparent that I was in no shape to go back to school and soon it became apparent that I was in no shape to remain at home either. I posted a trigger warning in the first part of this mental illness saga but I’m going to post another one now. Seriously, if you’re easily offended, easily grossed out or if it’s important to you that you maintain a high opinion of me, then stop reading right now.

After I was released from the mental hospital, I began calling my mother a cunt, spitting in her face and urinating in cups that I left on my bedroom floor. When asked why I was doing that I said that I found using the toilet to be too much effort. Than I engaged in an act so disgusting that I will not post the details of it on the internet.

I don’t actually remember doing those things though. My mother told me about them later. There are a lot of things I don’t remember about that period in my life even though in general I have an amazingly good memory. I did eventually get ECT and memory loss is a side effect of it so maybe that accounts for my memory gaps but it think it’s just as likely that I consciously or unconsciously chose to block those details out of my memory.

After the disgusting incident that shall not be named, my mother began searching for a residential treatment program for me. Finally she found one located in Idaho that seemed like it would be a good fit. They accepted me and she informed me that I would be going there.