Thursday, September 17, 2009

The Conundrum: to force, or not to force people to get treatment? (this is going to be a long one)

I'm a little on the fence about this issue. I've discussed forced treatment before on this blog. The reason I'm on the fence about it is, while I agree with E. Fuller Torrey, author of Surviving Schizophrenia (which I think is an excellent book like no other that exists) and founder of the Treatment Advocacy Center on some points, I don't completely agree. Similarly, while I agree with The Bazelon Center for Mental Health Law, which has long been completely at odds with the Treatment Advocacy Center and Torrey, in some ways, I also understand the problems with their argument.

Basically it boils down to this: People on the Torrey side of the street believe that those of us with severe mental illnesses, such as Schiozphrenia, and Schizoaffective Disorder, should be forced to take medication whether they want to or not, as medication will help them, and prevent them from ending up in jail, homeless and on the streets, and unable to function.

Across the street at the Bazelon center, there are folks who are all in an uproar against the other side, because they think that people with mental illnesses have civil rights and that those rights are denied when these people are forced to take medication that they do not want, or locked up in a hospital which they don't want to be in, or forced to live in a group home where they don't want to be. Considering the historically deplorable conditions of most psychiatric hospitals, which have improved greatly since the days when people were chained to walls and locked in cages, but haven't improved nearly enough - the Bazelon side has some good points to make. Whose civil rights are being protected when someone is locked into a state hospital? The person with the mental illness? Or the public that hates that person and doesn't want her on their sidewalks?

That's the question.

Torrey would say, by locking someone into a mental hospital, you are protecting their rights as you are giving them forced treatment which will help them (hopefully) get better. He makes that argument in this OpEd piece about people in New York City being released from group homes and put out, essentially, to fend for themselves on the street (according to Torrey). According to Torrey, advocates for the mentally ill sued to get those people released from those group homes, in the name of civil rights. Torrey says that this is wrong for a few reasons. For one, he thinks the people will end up on the street and therefore be homeless, and ostensibly, he cares about this. But on his other point, he says that the public at large will be harmed by people with mental illnesses living on their doorsteps and in their public parks, and (and here's where I disagree), potentially becoming violent and harming people.

The number of people with Schizophrenia who actually become violent and harm others is very low - but you'll never hear that fact come out of Torrey's mouth or read it any of his writings. So I take offense. I have this illness. I have never, in my entire life, including during years when I was floridly psychotic and not on any medication, been violent or done anything to harm another human being intentionally, or unintentionally. I have met, through my travels in the mental health system, MANY people with serious mental illnesses, and I know of one of them who became violent and killed someone - but this person was also a serious drug addict. The other 99% have never done anything to hurt the public or any other individuals besides themselves. Most, of course, have harmed themselves at some point (and sometimes on a regular basis). The research supports my argument here. And the Bazelon Center folks, along with numerous other groups fighting for the rights of people with mental illnesses, make this point all the time. We're not really a big threat to the public. We're not a bunch of murdering psychopathic serial killers like the people you see on TV and in films with Schizophrenia, either. And we have human rights. So the Bazelon Center considers that recent court decision in New York to be a victory.

There are other patient advocate groups, too, that say medication should be an option and not ever a forced one, and some who say medication is a problem altogether. I recently found this group, the Icarus Project. Their website states the following: "We are a network of people living with and/or affected by experiences that are commonly diagnosed and labeled as psychiatric conditions. We believe these experiences are mad gifts needing cultivation and care, rather than diseases or disorders.". It is this kind of description of mental illness which troubles me. There is no other serious disease that I can think of which people would refer to as a "gift". I do not consider suffering through psychosis to be any sort of "gift", unless you're talking about a gift from Hell. Is hearing voices tormenting you and telling you to die, to kill yourself, to think you're a worthless piece of trash, so often that you can't think clearly enough to function in the world to be a gift which one would want to "cultivate". Destroy, maybe. Cultivate, no.

I am all for civil rights. I am all for creativity. I am all for people loving themselves and not being labeled with derogatory terms. I agree with the folks who think the term "Schizophrenia" has such a negative connotation in our society that it needs to be replaced with a new word or words. But I draw a line when it comes to thinking of an illness as a gift, when it comes to being "proud" that I'm "mad", when it comes to giving a positive spin to something that almost killed me and tormented me daily for a decade. I'm not mad. I don't really even understand the purpose of "mad pride", although I can understand people wanting to be proud of themselves. We all want to be proud. And I am proud. I'm not proud that I have the "gift" of Schizophrenia. I'm proud that I know how to live with Schizophrenia. And there's a difference. Schizophrenia doesn't enrich my life. I enrich my life by my own efforts, in spite of Schizophrenia.

And I'll go further, to say, medication saved my life, and that is not something I'm ashamed to tell you. If it were not for medication, I would still be wandering around hearing voices, seeing the same color everywhere, thinking I was Jesus, searching Scientology books for clues, hiding from the CIA, and attempting suicide on a regular basis. And the way that I got on that medication, was, in fact, because I was forced into a hospital by a judge for a period of six months, and I had no choice about the matter. And if I had to go back to that time period, and I was living with this same illness destroying my life, I would say, yes, go ahead, and lock me up and make me take that damn medication because it is only after I have a period with less psychosis, only after the voices stop or at least slow down and the delusions lessen, only after I understand that I actually am ill and that medication is actually not poison, only THEN that I even know whether or not taking medication is something I should do.

If I do not possess the ability to DECIDE based on real facts and clear, logical thinking, that I NEED medication, then, yes, I agree that I may need to be forced to take some.

I am an activist and an avid believer in civil rights. But I'm also just talking about reality here. In my own real life, this is what happened. And I also see the homeless people on the street where my apartment is, and I see them wandering with their bags, and their suitcases, and their shopping carts, sleeping in the neighborhood parks, looking dazed and confused, and I think, "THANK THE FREAKIN' UNIVERSE THAT I'M NOT THERE". Because I have been there. I never lived on the streets, but I was homeless and in homeless shelters more than once. And I would rather give up my civil right to NOT take medication, than to keep that right and be in that same situation of psychosis and homelessness again. But I can say that now, because, I'm not psychotic now. I know I have an illness now. I know how it affects me now. I have a great deal of insight into this illness now. Such was not always the case.

So, I guess, at the end of the day, I am closer to E. Fuller Torrey's side of the street, which is strange, really, since I do believe strongly in people's civil liberties. But I'm not so sure that the right to suffer and die should be considered a civil liberty as much as it is considered inhumane torment.

I am grateful for a gift, but the gift is not my illness. The gift is insight. Thank the universe for that.

That said, I do want to explain that I'm not trying to downplay the importance of human rights or the problems that do exist in the mental health care system we have, or the horrible side effects of medications, or the fact that for many people medications do not work at all, or the fact that there is no cure for any mental illnesses. I think in the article I linked to in the first paragraph of this post, the important point that Torrey made was that the group homes which were not up to par and were decrepit and awful needed to be improved, that the answer was to improve them, and not to shut them all down and leave the folks who lived there with no place to go.

I know very well that psychiatry is not perfect. I believe that people should empower themselves, and if there are alternative treatments that work for you, then great, go for it, do what you want. But for many of us, alternative treatments do not work, and in fact nothing much does work other than the pills. So we are stuck with this reality, and it is an important reality of which to be aware. If people do not understand this reality, they are not really empowered at all. They are stuck in the dark.

Then again, the solution is not to round up all the homeless people with signs of mental illnesses, cart them off in buses to a compound, and inject them all with Risperdal. The solution is more complicated than that. This is a discussion that has many sides to it, and there may be more questions in the air than answers, as I finish this post. But I am not a god. I don't have all the answers. Just some thoughts....

Tuesday, September 08, 2009

In my mind I'm going to Carolina.....

I sing when I'm driving sometimes. I guess a lot of people do this. Recently, I was listening to some James Taylor tunes. The song "Carolina in My Mind" reminds me of a time, five years ago, at my worst point of unmedicated hell, in a hospital, where my mom had given me a James Taylor CD with this song. I roamed the large living area of the ward listening, with those headphones that I cherished by that time for the horrific voices that music was able to drown out. I was hearing things all the time then, whenever someone spoke, I heard two or three or four statements coming out of their mouths, at the same time. It was hard to drown out that kind of noise, to make my brain calm down, to develop a space of calmness inside myself. I used James Taylor to do that.

It wasn't that I was a big fan of James Taylor. It was that those words "I'm going to Carolina in my mind," meant something significant to me. I was trying to escape the nightmare of my life. I wanted so badly to get out of my own head. I was terrified that I was being drugged with poisons as I was locked in this public mental hospital which is a horrid place to ever have to go to. And so now, five years down the road, when I'm having a hard time, I'll sing inside, "I'm going to Carolina in my mind...."

"Mexico" is another song on that cd. My roommate, Prudence, loved "Mexico". I'd share my CD player so she could listen to it. She was Schizoaffective and also incredibly intelligent and creative. We became fast friends. I still have a journal from that time with entries she made in it. We stayed in touch for some months later, but not after that. She went back to Washington D.C. to marry some guy who she had been having an affair with. She had very drastic mood changes. The last time I saw her, she wore a wig, because in a manic rage she had shaved her head bald. She taught me how to say, "Don't let the bastards get you down," in Latin. Her dad was a lawyer. He cut her out of his life because of her mental illness.

It's funny how songs can bring you back to another time and place where you listened to them before. I was very lucky to be in that particular hospital ward, because I was one of a few who were able to keep CD players - wires and all - with us, in order to distract ourselves from the voices. This is a rare gem of a treat in a mental hospital, where cords of any kind are usually considered contraband and never allowed.
But at the SRT unit, we were able to keep our music. One young woman walked in circles singing loudly with her headphones on, all the time. It was annoying, as she couldn't carry a tune, but we all got used to it.

The other day someone said, "Hello," and I heard the "Holo" as in "Holocaust" which I used to always hear when a person said "hello". This is how my brain works. I have special meanings attached to some words due to delusional thoughts. I have been at a point for a few months where I rarely hear them, though I still hear them on a regular basis - enough to notice them, enough to get worried about them.

When people say, "Gotcha", I think they're talking about beating me at something, or catching me in a lie, and that they really did "get me". I think they're talking about the concentration camps that my mind conjures up.

When people say, "You're welcome," I hear "You'll walk home." This is a reference to the future days when people will be forced to walk to concentration camps. There is a long trail in Florida that is used for exercise. I thought for years that this trail was there for people to walk to the camps. Sometimes, since I still hear the phrase, for a brief moment, I still believe the delusion. It sits there, caught in the air above my head, waiting for me to catch it and keep it, or to leave it alone and let it go. I choose to let it go most of the time.

My Risperdal injections do work for me. I am better than I was for many years. But I think, since I rarely ever talk to anyone about these symptoms, people assume I never have this kind of problem now. Or people - those I work with, for example - do not even know I have the illness in the first place, so they have no idea my brain plays these tricks on me. Sometimes I just want to tell someone, "Hey, this annoying thing happened yet again. I'm scared." That's when I come here to write. And there is always James Taylor.

And there are always words to remember:

Friday, September 04, 2009

the difference between satisfied and truly happy is large and looming

Things have been going okay lately. I am on the board of directors for the state of Florida branch of a national women's rights organization, as of last weekend. That is very cool to me. I am happy to join in and do volunteer work for feminism, as it is something I strongly believe in. At the same time, I am still my self. Which means, my brain doesn't always function up to par, and, perhaps more importantly, I don't feel that I amup to par. I particularly don't feel up to par when I'm around people who are smarter than I am, more educated than I'll probably ever be, more creative than I am, and more fully alive than I feel I am.

I would like to be more fully alive. I am not sure how to make this happen.

Tonight, after work, I went to a movie (four bucs on weekdays) with a close friend. That was fun, but what's lacking is more time with more close friends, I guess. I really only spend time with this one friend, and that's not always frequent. I guess, if I have to admit it, I miss some things about being in a relationship. I don't miss being "The Girlfriend" to "The Boyfriend" - a lot of things about my last relationship were screwed up, and dysfunctional. I do not wish to go back to that era where I cooked, cleaned, did all the dishes, and got insulted because I became overweight. I do not wish to feel subservient to a man again. I do not wish to fore go things that matter to me, like writing, and activism, because all my time is wrapped up around a man. I will not go back to being that way. After all, you're here, reading this, and that means the world to me, so how could I ever go back to never writing in my own blog??

But I do miss things. Little things. Someone to laugh with you at a funny TV show, or the cat acting crazy, or the bizarre behavior of some of my family members and/or myself. Someone to go to breakfast or dinner with, to go to the movies with, to be with so you're not always alone. I miss that. I have a feeling I won't have it again for a very long time. I have a mental barrier up at this point, because of my weight, and I wouldn't even be interested in dating someone right now. I want to be confident in my self and my appearance, and I'm not at that place at this time. Frankly, I don't know who would want to date me. I am 40 lbs. overweight, even though I have lost 33 pounds. That first look at a person means a lot in regards to whether or not there is attraction or the potential for any kind of relationships.

The other thing is that I haven't had a lot of lasting relationships with the opposite sex. I have had one very long dysfunctional connection to someone who did not care about me in the least. I've had short-term boyfriends who never really got to know me (luckily in some cases), and who I didn't really know very well either. And then I had Jim, my long-term, live-in guy. Jim and I are about as similar as oil and water. We had absolutely nothing in common, other than being at very vulnerable, scary points in our lives when we met, and perhaps being a bit needy and all-too-willing to jump into something that seemed like a sailboat for drowning loners. So we did that, and that went on for a couple of years. And then it ended. It ended long before he moved out. Then he moved out, and reality set in. Then I spent a year being seriously depressed and also having a lot of psychotic symptoms. Which didn't help matters.

And now. Now, I feel okay. I guess it is because I feel okay that I can look around and see what is lacking in the atmosphere of my life. There is furniture with no one on it. There is an apartment with no voice except my own. There is the computer, with people who are not-quite-real. And there must be more out there, to find. I need a map. Or something.

The other thing eating away at me is that I'm not in school right now. I'm not in school because I owe money on student loans which I cannot pay, and I am probably not going to ever be able to get another student loan, which means, I have no chance of ever finishing college. That is not a pleasant thought, so I try to keep it out of my mind.

And, of course, if I did have the money to finish college, there is the issue of not being able to read more than a paragraph, which continues to plague me. I cannot concentrate. I try. It doesn't work. None of my medications help me with this at all.

So that is bothersome. Obtaining a degree has always been my goal, one of my most important goals. Another goal has always been to write a book. I suppose I could start working on that, though I get a little overwhelmed by the prospect of starting, and do not have much faith that my book would be published even if I did write it. Though I know it's in me to write it. I have known that for a while. I have the story to tell, and I feel I could tell it, if I just knew where to start, and if I just had more faith in my own ability to write. I endlessly compare myself to people who are more accomplished than I am. Always coming up short does a number on your self-esteem. I need to work on this. I need to stop comparing. We all have our own cross to bear. We all have obstacles to overcome. We don't all start at the same spot in life.

If I can work through some of these problems, I think I will feel more fully alive. And for now, I do feel okay.

Tuesday, September 01, 2009

Freedom from Squalor

My apartment was getting into the disaster-area zone again recently. Well, almost, anyway. I had cleaned well a month or so ago, but didn't keep up with the cleanliness, as this is something that goes against my constitution, apparently. My case manager came over on Monday, and, knowing she would be coming, I spent Sunday cleaning. This is how it went: do dishes. sit on couch and drink iced tea, because I need a break from the dishes. clean kitchen counters. turn up the music playing on my computer so I can distance my thoughts from the act of cleaning. sit on couch a few minutes listening to Bright Eyes. straighten living room up. get tired. get depressed. "How will I ever get this done???", I think. Get up. make a sandwhich for lunch. sit down, and eat it. tackle the bathroom with toxic bleach-filled cleaner spray because I hate germs. get bored quickly with this. thinking again, "I can't get the rest done.". then, get the rest done.

Moral of the story: It took a while, but by Monday morning my case manager said this was the cleanest she's ever seen my apartment in the three years I've lived there. She was impressed. I was proud of it, having bought a few knick-knacks for decor at the Goodwill and other cheap shops since last time she was there, so I showed her, "Look at my kitchen," because I remember the days I was too depressed to make a decent space out of my kitchen, too psychotic to deal with the dishes, and too apathetic to really care. I care now. So I showed her my kitchen. My kitchen looks darned nice. I once took pictures of my apartment when it was sparkling clean and posted them on Facebook. Nobody probably understood why I did this. It's called motivation. Something I really need in ample supply when it comes to cleaning.

Perhaps you have seen the new show called "Hoarders" on the A&E network. It was on again last night. Exploring the links on that show's website, I came across this Children of Hoarders site, which is excellent! Even better, I found Squalor Survivors, a site that contains information I relate to on more than one level. My mother lives in squalor all the time. Occasionally, I do too, albeit to a slightly lesser degree. I have lived in Level 1 and Level 2 - as rated on this site - on my own, and my mom lives in worse. From that site I also found this Stepping Out of Squalor message board community, which made me feel like there are others out there who actually understand this problem. On TV, you see horrid examples of hoarding gone way out of hand, but you don't see examples of extreme messiness which isn't as bad as the hoarding but is another degree of the same exact problem. I'm convinced that in my mom's case, and in my own, and in my sister's, there is a biological element. As hoarding has been proven to be a form of Obsessive Compulsive Disorder, and genetic as well. Meds for OCD can, supposedly, help with the problem.

I've met all kinds of hoarders through the NAMI support group I used to go to. I didn't realize there were so many of us around. There was a guy whose situation was worse than mine or my mom's. He said he had no working plumbing in this house. He used a bucket to go to the bathroom. He went to the YMCA to take a shower. And he wasn't worried that someone was going to lock him into a state hospital, as I thought might not be a bad idea for him after I heard him describe his place. He just got used to living like that. So that's how he lived.

People who don't have this problem don't seem to understand it much at all. I understand it. I think it's partly a learned behavior and partly the OCD connection, in my family. My one family member hoards in the refrigerator and closets, but also keeps her house very clean and it doesn't look cluttered until you really start looking into things. My other relative, on the other hand, lives in a dump. Her house is owned by her father, and so, she's lived there for about 16 years. But he's never seen how it looks. He's dying now, and hopefully he'll never know about how bad her house is, because I'm sure he would be horrified if he had ever seen it. My relative's house is at the level where she can't have repair people come in to fix things. It's been like that for at least ten years, I think. She has a shower and sinks and an entire bathroom that can't be used. She used to have it worse than that, but she did get some repair work done in the past couple of years.

It's something that shames my relative. She is ashamed. When we see it, we are embarrassed (meaning people in my family). It's easy to blame her or assume she's lazy. But I know it's not that simple. She's not lazy. She's totally chaotic and disorganized and lives in squalor, but she's not lazy. She'll get a new job every month or two, and have fifteen other job interviews line up. She's bipolar. She needs therapy and won't get it. She needs her meds adjusted and doesn't care. But she's not lazy. My mother lives in a nightmare. You walk in and there are dishes in the sink that have been there for a month. You go to use the restroom and can't wash your hands because the sink in the bathroom hasn't worked in five years. For months, she couldn't take a bath or a shower because her drain was broken. So, she'd get the water out with a bucket after she took a bath, and then dump it down a sink that does work. She lived like that for months, because the place was in such bad shape, she couldn't let a plumber in to fix the drain, even when she had the money. A couple times she came to my place to take a shower.

It's hard to see your family member live that way. It's always been hard. Most of my life, I'm talking about, has been like this, but primarily it's been the past ten years. I don't really know what set it off. I don't know how things got so out of hand. I just know this is how she lives, and she doesn't know how to fix the situation.

But there are other people in this same boat. One of my online friends had a bad problem in her house too. I met numerous people through NAMI who had hoarding problems. The facilitator for the NAMI support group sometimes goes to their houses to help them throw things out. And, I will admit, my case manager has been to my apartment at times when literally, we just picked up stuff and threw it in the trash, bag, after bag of trash. I don't live like that now. But I did, and it wasn't that long ago.

My family member does try to clean up her mess. About a month ago, she had an entire dumpster delivered to her house, and she filled it up twice, with junk that was in the garage for years. She was full of energy and motivated at the time. I am not sure why she was able to manage that on that day, but she was. And she did a good job. Her place looks better now than it did a year or two years ago. She tries to fix it up. I have tried to encourage her to work on it. We've picked out fake flowers and vases and things together to decorate the place. It has white walls with almost nothing on them.

The house is, of course, just a sign of a more serious underlying problem. But regardless of the problems someone has, if a person is your mother, she is always going to be your mother. You can cut yourself off from people, but when I did that I was a very lonely person. I love my mom, and, if I could, I'd fix her house and the entire issue for her. But only she can do that. Just as, only I can keep my apartment looking good now that it's neat and clean again.