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.

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.

 

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.

Adventures in Mental Illness: Part 10

Within a few hours of my first ECT treatment I picked up a book for the first time in over a year and started reading. I’d always loved books but for the past year I’d been too depressed to read. I’d lost interest in it and I did not have the mental energy or the concentration level that reading would require. Even when I’d spent long periods of time in solitary confinement in mental hospitals and treatment centers, when I’d had nothing to do, I had not read anything.

The fact that I was reading now was seen as a very good sign. A few days after I started reading the book I finished it and it was time for my next ECT treatment. By then I was showing additional signs of improvement. I was talking more and I was laughing more. My sense of humor seemed to have returned along with my desire to read. When I filled out the depression survey before my next treatment I was able to honestly rate the extent to which I’d been experiencing certain depression symptoms as lower on the scale than I’d rated them at my last appointment.

As I got more ECT treatments, I became more engaged in conversation and with life in general. I’d always had a loving relationship with my mother but lately I had become aggressive and defiant towards her. With ECT the lovingness returned and the aggression decreased. For a while my mother had suggested taking courses at the local university and working towards finishing my degree but I had adamantly refused. A few weeks after beginning my ECT treatments I agreed to return to school.

One of the most prominent and worrisome side effects of ECT is memory loss. One of the first courses I took when I went back to school was Learning and Memory. I got an A in it. I have always had an exceptionally good memory. Many people are amazed by the things I’m able to remember, some are amused by it and a few are even creeped out by it. I think I honed a good memory from an early age as a survival skill to compensate for all the deficits I had. My good memory has always been a source of pride for me so I was not thrilled at the prospect of losing it.

Luckily ECT did not cause me to lose my memory in any significant way.  I have lost a lot of memories for the things that happened in the year or so before I had ECT treatment but who knows if that’s the effect of ECT, trauma, depression or some combination of the three. Regardless, I do not think I am any worse off for not having those memories. In fact, a lot of  the things that happened during that time period were pretty awful, so I’m probably better off having no memory of it.

I started out having ECT three times a week and eventually tapered down to maintenance ECT once a month or so. When I went long periods of time without ECT I’d start to slip in to moodiness and aggression. Once I got the ECT my mood and behavior would improve.

The ECT procedure itself always went smoothly and was always painless for me. The preparations I had to undergo to get the ECT caused me more problems than the ECT itself did. If you’re a man you may have an easier time preparing for ECT than if you’re a woman because you will not have to take a urine pregnancy test. There was literally no chance that I was pregnant (if I were we’d be looking at the second messiah) but the doctors weren’t going to take my word for it. I’m not very good at peeing in a cup on command and there were times when I just couldn’t do it. Usually when that happened the doctors would waive the pregnancy test requirement and proceed with the ECT but on at least one occasion they canceled my treatment after I failed to pee in a cup.  I have to admit I was a little irritated by that, especially when I found out that ECT is considered safe during pregnancy.

When I started taking afternoon classes, my schedule did not match up with the ECT schedule at the hospital I was going to so I had to switch to a different hospital. The nurses at this hospital had trouble sticking my veins in order to insert the IV in so I had to have a port inserted in my chest.  I still have a crescent moon shaped scar on my chest from that port. It’s visible whenever I take my clothes off, whenever I wear a low cut shirt or a bathing suit. It’s not the most attractive thing and sometimes I wish it wasn’t there but there’s another part of me that kind of likes it. It’s like a battle wound from a difficult period of my life that I survived.

I consider both the scar and the having to pee in cups to be relatively minor issues.  They were a small price to pay in exchange for everything that ECT gave me. I say that ECT  shocked some sense in to me and my mom says it caused a switch to go off for me (puns intended.) We regret that we did not agree to it when it was first suggested but considering all the negative opinions, the fear, the stereotypes and stigma there is surrounding it we can hardly be blamed for that.

Many consider ECT to be barbaric but there was nothing barbaric about the ECT I got. I consider some of the ways in which I was treated at the residential facilities and mental hospitals I was in to be much more barbaric than my ECT treatments.

It has now been a few years since I’ve undergone ECT. I’d like to tell you that ECT completely cured my depression, that I was never depressed again and that I lived happily ever after but that wouldn’t be the truth. I did continue to be depressed after I had ECT but my depression has been much less severe. I read somewhere that ECT tends to be very effective at alleviating symptoms of depression such as loss of energy, appetite and interest in hobbies but not as effective at alleviating symptoms such as guilt and low self esteem. That has certainly been the case for me. I struggled with guilt and low self esteem for years after I had ECT and I continue to struggle with it to this day.

It is said that many people who experience relief from depression as a result of ECT eventually relapse. Although I have struggled with depression since getting ECT, I do not consider myself to have relapsed. I never returned to that all encompassing, mind numbing, zombie-like state of depression I was in before I had ECT and I hope I never do return to that state.

ECT gave me back my ability to take pleasure in the simple things in life-things like reading a good book, having an interesting conversation with a loved one or taking a walk outdoors on a beautiful day. It’s those simple things in life that provide me with joy and relief when I feel depressed, overwhelmed and hopeless. It’s the joy I am able to take in the simple things that prevents me from being suicidal.  When the ‘big things’ in my life are not going well and are stressing me out, the little things comfort me and I realize that some of the little things are actually the big things.

Based on my experience with ECT, I would recommend it to people who are suffering from severe treatment resistant depression but I realize that my experience with ECT is not everyone’s experience with it. I’ve talked to other people who have undergone ECT.  Some, like me, experienced a lot of positive results and minimal negative side effects. They are very glad they underwent ECT. Some people experienced some severe negative side effects but also experienced a lot of positive results. They consider ECT to have been worth it. Some experienced a lot of negative side effects and little or no improvement. They regret undergoing ECT.

I hope that in sharing my story on this blog I am encouraging people who will benefit from ECT to try it but I do also worry that this blog could push the kind of people who will experience severe negative side effects and no improvement as a result of ECT to try it. There’s no way of knowing for sure how you will react to ECT until you try it. You just have to decide for yourself if you consider it to be worth the risk.

If someone has had a negative experience with ECT it’s fine for them to publicly talk about that experience as long a they can acknowledge that their experience with ECT is not everyone’s experience with it and that some people have benefited from it. However, when people who have no experience with ECT and no real knowledge of what it actually entails decide to publicly spout off  about how horrible and barbaric it is, that makes me angry. It makes me angry when they spread lies and misinformation about ECT, when they base their opinions on it off of stereotypes that are perpetuated in the media, when they judge others for undergoing ECT or suggesting that their loved ones undergo it, when they call for the procedure to be banned.

I feel especially angry when the people who choose to voice such ignorant, misinformed opinions are people who have never experienced severe depression themselves. ECT is not anyone’s first choice but sometimes it is literally a choice between life and death, between having a decent quality of life and having a miserable shell of a life.

These days I’m in a much better place emotionally than I ever would have thought possible at the time I was locked in the back ward of a mental hospital, alone and miserable. I truly thought my life was essentially over then, that I would be miserable for the rest of my days, that I would never experience joy again. I’m so glad that has turned out not to be the case. I credit ECT for getting me to the point where I could experience  joy again.  While some of the changes I’ve made in my life are not a direct result of ECT, they may not have happened if ECT had not given me the initial kickstart that jolted me back from the land of the dead.

I will forever be grateful that ECT was a treatment that was available to me, a treatment informed professionals were able to guide me through, a treatment with minimal negative consequences for me and significant positive results, a treatment that worked for me, a treatment that changed my life for the better.

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Adventures in Mental Illness: Part 9

Before I got my first ECT treatment, I was instructed not to eat or drink anything for 12 hours beforehand. When the time for my treatment arrived I was driven to the ECT suite of the mental hospital I’d first stayed in at the beginning of this mental illness saga. I filled out a survey about my depression symptoms and I signed a waiver acknowledging the risks of ECT including confusion, memory loss, nausea, headache and jaw pain.

Once I had filled out the paper work I was given an ID bracelet and instructed to pee in a cup. Then I was taken to a bed and instructed to lay down. My bed was surrounded by curtains on both sides and on one side was the ECT machine. Nurses placed electrodes on my head and an IV in my arm. The nurses who attended to me were kind, helpful and gentle. They in no way resembled Nurse Ratched (the evil nurse from One Flew Over The Cuckoo’s Nest.)

Once the nurses had set me up a doctor came over to my bed. He told me his name and introduced himself as the anesthesiologist who would be performing the ECT. He said he was going to administer the anesthesia through the IV and I would be knocked out shortly afterwards. He asked me to state my name and the procedure I was undergoing. I did so. The nurses gave the all clear to begin the procedure. I felt a brief sting as the anesthesia entered my veins followed by a woozy floating feeling that lasted for a few seconds and then I was out.

I woke up a few minutes later. I experienced no confusion and no pain. I knew exactly where I was and what had happened. Physically I felt fine. A nurse came over and asked me how I was doing. She then helped me off the bed and guided me to the waiting room. In the waiting room I was treated to a selection of snacks and juices

When my mother came to pick me up she spoke to me and to the doctors. We acknowledged that so far the procedure had gone well with no complications. I was told to take it easy for the rest of the day and to call them if I started experiencing any serious side effects. They said it might take a while to see results and that if I didn’t see results from this unilateral ECT treatment they could try bilateral ECT. Unilateral ECT means inducing seizures in one hemisphere of the brain, bilateral means inducing seizures in both hemispheres of the brain. Bilateral ECT carries a greater risk of side effects.

As we got in to the car, my mother and I were both relieved that I had survived my first ECT treatment and that it had been painless. Now we just had to wait and hope that it would produce positive results.

Adventures in Mental Illness: Part 8

The days, weeks and months following my release from Payne Whitney are even more of a blur to me than the time I spent in the hospital is. I remember very little about that time period. I was still on anti-psychotics, I was still a zombie and I was still miserable.

Years after I was released from Payne Whitney I expressed interest in volunteering at a local preschool for disadvantaged children. My mother told me I might not be welcome there. Shortly after I was released from Payne Whitney she had sent me to volunteer there in an effort to get me out of the terrible funk I was in. I was asked not to come back because I was behaving inappropriately and ignoring the children. I had no memory of this. I’m sure it’s one of many things that occurred during that time period that I have no memory of.

In the years that followed Payne Whitney I underwent many different treatments for my depression. There were the conventional medication and therapy treatments as well as some more unconventional treatments. There was the Ketamine nasal spray that sent me on a cool ( and totally legal) drug trip but left a very unpleasant taste in my throat and did nothing to alleviate my depression. There was the Transcranial Magnetic Stimulation which filled my ears and head with very unpleasant noises and vibrations without alleviating my depression and without even giving me the benefit of a psychedelic trip. There was the Dialectical Behavioral Therapy that may have had some value but put me in a group situation that I just wasn’t ready for or comfortable with at the time and that gave me a diagnosis of Borderline Personality Disorder that was about as accurate as my Schizoafffective disorder diagnosis.

A few months after I was released from Payne Whitney I saw a new psychiatrist named Dr. Deerberry. Dr. Deerberry was an elderly man and in all honesty he was at a point in his life when he should probably be considering retirement. He was rather scatterbrained, frequently forgetting scheduled appointments and my name. Yet in many respects Dr. Deerberry still had his wits about him and was a very good psychiatrist.  Ultimately he ended up being very helpful to me. You might even say he saved my life.

Dr. Deerberry was skeptical of my Schizoaffective Disorder diagnosis. He said “If this is Schizoaffective Disorder, it’s much more affective than it is schizo.” He took me off the antipsychotic medications and he recommended an alternative treatment called electronconvulsive therapy (ECT, also known as shock therapy.)

You may recall my mention of ECT in Episode 2 of this mental illness saga but since it’s been a while let me refresh your memory.  ECT is a procedure done under anesthesia in which electric currents are sent in to the brain in order to trigger a seizure. It has a history of being used abusively and without the patient’s consent. It potentially has some serious negative side effects including memory loss.

If that sounds scary to you, you’re not alone in feeling that way. ECT is a widely feared, highly controversial procedure with a heavy stigma attached to it. Dangerous, barbaric and inhumane are words that are frequently used to describe it. There are groups of people who advocate to have it banned.  Its portrayal in fiction and in the media is overwhelmingly negative.

It was first suggested as a treatment for me when I was put in a mental hospital in New Jersey after I withdrew from school in Florida.  My mother did not want it done to me then because she was afraid and I wasn’t interested in it either. When it was suggested again by Dr. Deerberry my mom still had her hesitations but we were running out of other options. I was in a very bad state and none of the treatments were helping.  We were assured that despite the bad rap ECT has, for the most part it is safe and it is often effective in alleviating treatment resistant depression. We had reached a point where the risks associated with me remaining in the state that I was in seemed greater than the risks associated with ECT. My mom said she wanted me to try it.

As for me, I’d seen One Flew Over the Cuckoo’s Nest and Requiem For a Dream, which depict ECT in a very scary and negative light but I knew that fiction doesn’t always reflect reality and that ECT has come a long way since the days of One Flew Over the Cuckoo’s Nest. When I was in high school a classmate of mine underwent ECT. I hadn’t thought that what was being done to her was cruel or barbaric but I had thought that it was sad that she was in such a bad state that doctors were resorting to such drastic measures to help her. I never imagined that some day I would be in such a state.

Clearly I was in such a state now though and had been for some time. I had little hope that ECT would work for me because I didn’t believe anything could help me at that point but it seemed worth giving a try.  The potential negative side effects didn’t bother me because at that point I didn’t care much about my memory or my health and it seemed unlikely that it would produce side effects that were any worse than the things I’d experienced in the last year or so. I agreed to it.

 

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.