Monday, August 25, 2008

Budget Cuts Affecting Psychiatric Care

Recently, I learned that the one and only, longer-term care facility for people with mental illnesses in the county where I live was closed, due to budget cuts by the state of Florida. This program, known as SRT, was the place that literally saved my life three years ago, when I was sent there under a court order called the Baker Act (an involuntary commitment law). Before I went to SRT, I shuffled in and out of the revolving door of numerous psychiatric wards an hospitals, always staying just a short time, until I was sent back out into the world, no better than I was when I had entered the places. I never stayed on the antipsychotic medication outside of the hospitals, because I did not have the insight at that time to know that I needed to be taking it. I did not realize I was seriously mentally ill. In my delusional mind, the medications were actually poisons that were being used to kill me. Many people with Schizophrenia have this belief. It is a common reason why people who are psychotic do not take their medications.

I sent the following letter about this issue to the Governor (Charlie Crist), all of the Florida legislators in the State, all of the Florida Senators and Representatives for my area in Congress, all of the county commissioners, and ali I sent a slightly shorter version to the St. Petersburg Times. Because I did not feel comfortable signing my last name to this letter when I sent it to the Times, they did not publish it. As is usual when writing to government officials, I received several form letters in response, acknowledging that I had sent letters to these officials, but not showing that they actually read what the letters said. However, when I told one woman I know who used to work at SRT, and who was laid off due to the closing, that I had written these letters, she was very happy to hear it, which made me glad that I had done so.

Here is the letter:

Recently the St. Petersburg Times reported that, due to state and county budget cuts, related to the passing Proposition One, the one treatment center for people with mental illnesses in Pinellas County which provided care for longer periods of time than short-term crisis-care units, was closed. This program at the Personal Enrichment Through Mental Health Services agency (PEMHS), was known as SRT, or short-term rehabilitation. It served as an alternative to the state hospital, for those with severe mental illnesses. I am writing to you, as a voting constituent in Clearwater, who received services, which I needed very badly, at the SRT center, in 2005.

In 2005, I was floridly psychotic from untreated Schizophrenia. I had been in and out of hospitals, where I had received treatment, at least a dozen times in the preceding five years, however I never stayed on medication or sought regular treatment after I was released from hospitals, because I did not realize that I was actually sick. During those five years, I made several serious suicide attempts, the last of which was in May of 2005 and involved a gun with which I would have shot myself to death, if I had not been prevented from doing so by the police, who took me to Morton Plant Hospital to be committed to the psychiatric unit, under the Baker Act.

Unlike my previous hospitalizations from 2000 to 2005, this time I was not released within a week or two and sent back out into the world in the same state I was when I was admitted. This time was different. I was ordered by a judge, under the Baker Act, to receive up to six months of treatment in the SRT program of Pinellas County. Because the SRT program was filled to capacity, I waited seven weeks in Morton Plant before a bed was available at SRT. I then received three months of treatment at the SRT center.

If not for those months, I would be dead right now. I say this with absolute certainty, because while I was psychotic I did not realize that I was dealing with Schizophrenia and I believed that medication was poison which would kill me. However, during this hospitalization, I had to take the medication, and I did. This time, as I was in the hospital much longer than my previous stays, the medication had a chance to actually take effect. I became lucid, my psychosis lessened, and I came to understand that the illness which had caused my years of suffering had a name, and that it was real.

From my involvement with mental health treatment, as well as advocacy groups such as the National Alliance on Mental Illness, I have met numerous people who have also been through months of treatment at the SRT facility. In many cases, these hospitalizations were what brought these people back to functioning on a daily basis like a productive member of society, prevented them from long-term hospitalization in a state institution, kept them out of emergency rooms and jails, and provided them a place to recuperate, when it was sorely needed.

Thanks to my own treatment at SRT, I have not experienced homelessness in years, I live in an apartment on my own, I attend college, I work, and I have run support groups for people with mental illnesses. In the past three years I have had only one hospitalization, which was for six days. I take my medication every day, as I have for the past three years, and it helps me to contribute to the world, which is a world, unfortunately, where affordable mental health treatment is harder to come by than treatment for physical illnesses. SRT provided a safety net for people who otherwise fell through the cracks. Now the cracks have widened, the net is gone, and the only people who are concerned about it seem to be those, like myself, who live with mental illnesses, and people who are employed in the mental health field.

The voting citizens and the government of Pinellas County, and the State of Florida must provide necessary services to people with severe mental illnesses. Mental health care is a human right. The grave mistake of closing the SRT center will soon result in people with serious mental illnesses repeatedly going through the revolving door of the short-term crisis psychiatric units in the area, where they are not allowed to stay long enough for their medication to ever take effect. The passing of Proposition 1, unfairly punishes people who, through no fault of their own, are sick with biochemical imbalances. A society can be judged by the way it treats its members who have special needs, and Pinellas County and the State of Florida are doing a very poor job, at the present time, of caring for people with psychiatric illnesses. This must be rectified through swift action, as soon as possible. There must be funding for a short-term rehabilitation program in Pinellas County; lives depend upon the existence of such a program. The lives of people with biochemical brain imbalances are just as valuable as the lives of people who have no such imbalance. Yet, people with psychiatric disturbances are now being treated by Pinellas County and the State of Florida as if their lives do not count at all, and their well-being matters to no one. Please do something soon about this situation. A change in the State budget to provide a program such as SRT in Pinellas County is needed, and it is needed now.

Tuesday, August 19, 2008

Positive Occurences

I have not been able to sleep well, so it's 6:30 AM, and I'm going to write to you about some positive things that happened yesterday. In other words, this is a report of Good News.

This past Saturday, I opened my mail, which I had not done in a few days or a week, and I found an eviction notice from the mental health agency that owns my apartment. It said that, as of Friday, which was the day before I read it, I was supposed to have paid this month's rent or moved out of my apartment. It was a Three-Day Notice. This was baffling because, just last month, on the 31st to be exact, my case manager at the other community mental health center (which is where I go for everything besides housing, because they do not provide housing), had spoken with a woman at my landlord agency's office, and the woman is someone I have been familiar with for a few years because of a major mistake that she made a couple of years ago when I was living in a group home managed by the same agency (this mistake resulted in me having to pay a few thousand dollars over the next several years as back-payment for bills she forgot to bill me).

Anyway, the day my case manager talked to this woman, whose name is Sylvia, my case manager said, "Oh Sylvia's said that you don't have to pay the rent in August, since I explained to her how you have not worked in eight months and you do not have the money at this time, but you will have it soon. She said you can pay off your rent in increments over the next four months". Funny thing is, Sylvia, is the same person who signed the eviction notice which said I was being evicted for not paying the rent this month. In other words, she screwed up severely, once again.

All weekend, because these agencies are not open on the weekend, I was really worried that I was about to become homeless again, because of this three-day notice. My mom kept telling me to pack up my belongings and prepare to leave the place. However, on Monday morning, my case manager took control of the situation. I had already called and emailed the landlord's office several times, and she did the same. In the end, we ended up having to physically go down to their office, have a little meeting and sign my new lease. I brought with me Sylvia's eviction letter, which her supervisor said that she should not have sent. She never apologized, and never even admitted that she was the one who made the mistake. This woman is a completely incompetent imbecile, in my opinion, and I have no idea how she got her job, but they really need to replace her. The outcome, however, was good, because I am going to be able to pay off this month's rent in increments, as was the original plan, and I do not have to worry about being evicted right now.

Another good thing that happened was that I was able to borrow some money from a family member to pay for two classes, while I'm waiting for my financial aid to kick in, in a few weeks, at which time I will pay him back. I am really happy about this, because I only need a few more credits to graduate, and I should be able to finish my AA degree, finally within the next year.

So that is my good news to report from yesterday. Also, I like my job pretty well so far. I will even be working today, although we have a hurricane supposedly coming by here. I'm not worried about that because in Florida, every summer there are hurricane warnings, and usually, a hurricane never its. Of course, there have been times when they have hit, but those have been rare in comparison to all the warnings we get about the ones that never end up causing damage.

The hallucinations have lessened significantly from a couple weeks ago. I still have some auditory ones. For example, when meeting with that idiot at the landlord's office, I thought she said that I was going to be murdered. This is a frequent thing that I hear when I'm having auditory hallucinations. I have not had any more visual hallucinations in the past couple of weeks since I saw that woman hanging from my ceiling. I have had a lot of the suicidal ideation stuff, but this is just due to stress, and it is not anything that is serious. I have no intention of harming myself, and no desire to die at this time. Which is good. Sometimes, when I get stressed out, like about thinking I'm going to become homeless, I get those thoughts as a reaction because I can't think of anything else to do in that situation, so dying seems like the simplest response. This is just a habit I've formed (which I have worked on correcting for some time), over the years.

Well, that's it for this update. I'll write more soon. As always, your comments are appreciated (Hi, Ken!).

Friday, August 15, 2008

Issues in psychiatric treatment of psychosis

I was trying to read the rest of the book, The Center Cannot Hold, by Elyn Saks today. I could not finish it, because of my blurry vision (which I will have to address with my old eye doctor sometime soon). However, I did get near the end. I like the book, but there are some issues it brings up which warrant discussion, I think. For example, Saks states in this book that restraints, while commonly used on psychiatric patients in hospitals around the United States, have not been used in England for some 200 years. She argues that, when she was severely psychotic, and thought to be a danger to herself or others, she should not have been put in restraints because this is an inhumane, degrading practice.

On some level, I agree with Saks. Obviously, nobody wants to be tied down to a gurney or a bed, unable to move, losing the most basic human rights of freedom simply because they have a mental illness. It is also rather odd, since I have spent so much time in psychiatric hospitals myself over the years, for me to imagine a hospital where nobody was ever restrained, even when they got out of control. I do think restraints and forced medication are used too frequently. I know they were used on me, and that it was not remotely helpful at the time, but I've kind of always thought, in retrospect, that there must have been some reason why I was put through that kind of treatment. It must have, somehow, been warranted.

But what if it wasn't? I recall, clearly, seeing other people put in restraints and shot up with medication, while there seemed to be no logical reason for this to be happening. I remember seeing a woman, who was my roommate, named Patrice, in New Jersey at one hospital I was in who got injected by the team of psych techs and nurses because she was yelling and aggravating them too much. She did not appear to be psychotic (but then, I clearly was psychotic so my judgement may have been lacking at the time), and I recall telling the staff that they should not be treating her this way (at which time, I was told to go away).

I recall banging on the door of the seclusion room, when I was in another New Jersey hospital, begging and pleading with the staff to let the screaming woman locked inside that room out. She screamed in Spanish, and she did it frequently. They locked her up. I only knew, on a deep level, that no one should be locked up for the fact that they were upset and yelling. It was unfair, and I did not like it in the least. I tried to talk to her through the door, to calm her down. That said, I, myself, at that time, believed I was pregnant with a baby implanted inside me, that I was in a concentration camp and not a hospital, and that I was in some movie being made by my friends and Ani Difranco. I was not exactly thinking clearly or logically. Does that mean I had no idea how to judge right from wrong? I am not sure, but I don't think it does mean that.

I think Saks makes a good point in her book, foreign though this line of thinking is to me, as I have been on the receiving end of psychiatric treatment for so long I don't always question the things about psychiatry that may be questionable. I disagree, however, with the idea that people should not ever be forced to take medication. Saks leans toward this concept, and I know that there are many people, including all the brain-washed Scientologists of the world, who think that people should never be medicated at all.

I know that medication saved my life, and that I was unable to keep myself on that medication before the medication worked well enough for me to know that I needed to take it. Therefore, being forced to take it, actually, saved my life. So I don't agree that people should never be forced to take medication. I was forced, and I am quite glad about that today. If I had never been forced into the hospital, forced to take medication, and told point-blank what my diagnosis was, I surely never would have regained a healthy level of functioning in the world, because I would have continued to roam around thinking meds were a poison that could never help me, and I would have continued to be floridly, horribly psychotic, and probably killed myself as well.

I do think, however, that it the idea of whether or not people should or should not be forced to take medication when they're psychotic is certainly worthy of discussion. Saks, who is in the legal profession herself, as a professor, seems to think that people have the right to refuse medication. I tend to agree, however this is a complicated topic for me because I know that being forced to take medication really helped me more than anything else ever did. I was lucky, in that medication worked for me, finally, when I was kept on it for months. For many years before that I was in and out of hospitals, never remaining on medication for long after I was sent home, and never correctly diagnosed, and never knowing that I was psychotic. So I lived a very painful, difficult existence during those years, which I would not wish on my worst enemy. To be living in an unreal world is no pleasure trip. It is a heinous nightmare from hell. For a person in that state, in my opinion, giving medication is more an act of mercy and care than a violation of their human right to remain lost in the nightmare of psychosis indefinitely.

So, at the end of the day, I think I disagree with Saks on this point. I tend to agree more with the arguments of E. Fuller Torrey, psychiatrist, and author of Surviving Schizophrenia, which is a bible for this illness, though, of course, he cannot speak about the illness in the first person as he, himself, has never been through it.

Also, Elyn Saks is, of course, a bit of an anomaly. She went through Oxford while suffering from Schizophrenia, then completed Yale Law School, then became a tenured professor at the University of Southern California and a published author. Many people with this illness struggle to complete the most basic tasks of daily living every day, and making such accomplishments in academia as Saks has made is really not possible. I think her story provides hope for those of us who are struggling to finish college or make our way in the world of work, but it should not be mistaken for a common story, because it is not one. Perhaps, if those of us who have lived through this illness continue to discuss it, and open a dialogue with others about mental illness and the importance of necessary research and treatment that works, eventually, we will have more useful treatments available, and maybe, someday, there will be no more restraints in hospitals, no supposed need for them, and no more Haldol shots either. One can hope.

Wednesday, August 13, 2008

College and Schizophrenia: An odd mix

I was talking to my therapist yesterday about school, and my self-esteem issues related to that subject. This is something that I think about frequently, and yet, I have not written about it much here, at least not recently. I am currently working at the college where I have also been an on-again, off-again student since 1993. That's really humiliating to me - the fact that I started taking classes 15 years ago and still have not earned a degree. I have enough credits for a degree, but not enough of the right credits, in the required areas. The reason for that is that my brain seems to work okay for certain things, and not so well for others. It has been this way since well before I was officially diagnosed, so I frequently felt that I had some kind of learning disability (and perhaps I do, I don't really know for sure). I was also diagnosed, many years before Schizophrenia, with Attention Deficit Disorder. So for a while, I took Wellbutrin every day to treat that, and I thought that problem was what was causing me difficulties in college. But there was more going on than just ADD, as you know.

The kinds of problems I have with college are:
-inability to concentrate at times to read texts
-memory deficits that make me forget what I did read and what was said in a lecture
-inability to focus well enough on lectures
-difficulty taking notes and listening to a lecture at the same time (so I ask for a notetaker from the Office for Students of Disabilities when necessary; even though, years ago, I myself was a notetaker for the same office)
-complete confusion in regards to most math classes
-feeling overwhelmed by assignments, deadlines, tests, and requirements, and becoming full of panic, anxiety and sometimes suicidal depression or psychosis
-hearing voices while in class or while studying, which makes it basically impossible to focus on class or studying
-hearing double speak coming out of the professor's mouth when they are giving a lecture
For example, I once heard a professor speak ad nauseum about me and the ways I was going to be tortured and killed and what a horrible, worthless human being I was, and how my whole family was also going to be tortured and killed, when he was actually talking about literature. This was about four years ago when I was not on meds. I had taken his class at the recommendation of my short-term boyfriend who thought that I was a good writer and would enjoy it, but who did not know I was psychotic - as I did not know myself.

-trouble remembering anything related to mathematics for any quizzes or tests
-trouble comprehending algebra, at all
-trouble related to the fact I did not take higher math in high school, and therefore, never learned it, so I have had to take classes that were below college level for math, and last semster managed to fail one such class, even though I had a tutor every week at the Office for Students with Disabilities
-trouble being awake and alert in classes when I am tired from medication
-trouble reading when medication (and also dry eye from Sjogren's) makes my vision blurry so I can't (I use eye drops for this when it is a problem, and I have had plugs in my tear ducts)
-wanting to take all the classes that I see that look interesting, even though I can, actually, barely manage to take two classes at once (because I still long to do what I was supposed to be able to do before this illness catapulted my life into Failure Land)
-wanting to take only classes that interest me (like literature), and not the required classes I actually need for a degree (like math and biology), because the things I like are easier for me than the things I have trouble with and therefore dislike
-hating myself because I did not manage to go to a better college, complete a degree, and have a degree by now

One of the biggest issues I have as far as why I hate myself is, back in 1999, when I was becoming psychotic but did not know it yet (and would not know for a long time), I was supposed to go to Smith College through a program for students above the traditional age. I had been encouraged to apply for this program by professors at the community college I was then attending in Maryland, and I had gotten references, written the essay, gone for the in-person interview and tour of the campus, and gotten admitted with a large scholarship. I wanted, desperately to go there. Instead, I ended up in a homeless shelter that year, and alternately sleeping in my car.

Also, I applied to several other colleges, including Evergreen State College in Washington, which has an alternative format which I believe would have worked well with my brain, and where I really wanted to go. I was admitted there too, but, of course, never got there.

So, now that I'm working at the college where I have been taking classes since the Stone Age, and am constantly talking to people about their college courses, as that is my job, I am thinking about college more frequently again, and I am berating myself about my failure in this area. My therapist, of course, encouraged me not to berate myself, and instead to have mercy on myself the way I would for someone else who was in the same situation, with the same illness. I find this very difficult to do. She said that this is because I am ambitious, that I hate myself for not being able to fulfill my ambitions, so, technically, it's an asset, because it means I want to accomplish things. I said, "Isn't everyone ambitious??" She said, "No". I don't know if she's right about that or not. I know she has a lot of experience counseling people with problems, though, so perhaps she has a point.

She mentioned that perhaps I could just get the Associate's degree I've been trying to get forever, and forget about getting a Bachelor's or anything else. I don't really like that idea, though I have mulled it over many times in the past. College has always been important to me. When I was a kid, the positive feedback I got was mostly related to school and my performance there. It became ingrained in me that this was a way to get accolades and feel like worthy person. It is also important to me because I like learning and value education and - dammit- I don't think there is anything wrong with that. I want my damn degree. I want a couple of them, in fact. I should have them. I don't have them. This angers me. Sometimes I really hate Schizophrenia.

So, this semester, as usual, I'm having trouble deciding what classes to take, deciding if I should take any classes at all, and wondering if I will be able to successfully complete any classes that I attempt. These questions are never easy to answer, because the symptoms change, the effects of the medication change, and the effectiveness of the medications change, so I never know for sure what the next four or five months are going to be like. It is basically a shot in the dark. I am, however, going to take something this semester, and I am not going to give up on earning a degree. Not just yet.

The following quote is on a postcard I bought when I visited the United Nations building in NYC last summer, which I just found in an old purse the other day:

All human beings are born free and equal in dignity and rights. They are endowed with reason and conscience and should act towards one another in a spirit of brotherhood." (let's add, sisterhood)

-from The Universal Declaration of Human Rights, by Octavio Roth

Sunday, August 10, 2008

Psychosis, coping, and Elyn Saks

Well, today I have been sleeping a lot. Seroquel exhausts me, especially at the dose I'm on right now. I had plans to do other things, but I was too tired. Perhaps I'll get used to this dose, however, the last time I was put on it - some months ago - I had to have it decreased just to be able to wake up in the AM and function during the day.

I've been having a lot of disjointed thoughts. I don't often talk about my thoughts anymore. Usually, if I'm having intrusive, obsessive thoughts (which I do quite frequently), I tell myself "Oh, there's an intrusive, obsessive thought. Be gone, thought! Go away." and then I ignore it. I go on, and act like it's not happening. Unfortunately, there are times when the thoughts come in and disrupt my ability to do other things, like hold a conversation that sounds "normal" or read a book or focus on much of anything. Such are the kinds of thoughts I've been having the past couple days.

Yesterday, however, I made plans and went out anyway. I first went out with my mom and my sister, who is down here for the summer but who will soon be returning to New York, where she lives for college. Then last night, I met up with my good friend, Kathy, who was once my roommate in a group home where I lived before I moved into this apartment. Kathy's the same age as my mom, but we have a number of things in common. And, after knowing her for a few years, I found out we also have the common love of bookstores, so we met at one and stayed till they closed the place.

I was having some trouble reading, however, because of blurry vision, which is either from my Sjogren's Syndrome (something I just ignore most of the time and don't currently get any treatment for because it is not too severe at the moment), or from the increase in Seroquel. So we talked, and I looked at pictures in magazines. Trouble was, while we were talking, I was having intrusive thoughts that my friend was recording the conversation with some sort of recording advice, which she was going to use against me by replaying my words to people who I cannot trust, and, while I recognized these thoughts as paranoid and abnormal, I also had trouble getting them out of my head. I was careful not to say certain things, just in case I was being recorded. This tendency to think I'm being recorded has been with me for many years. It occurred for a very long time before I was ever diagnosed with Schizophrenia, and it is something that I have hardly ever talked about with anyone, ever. No harm in mentioning it here though. Perhaps, by talking about it, I can take away some of the power the thoughts have over my mind.

Today, I got up, went to the bookstore again, to continue reading the excellent memoir of Elyn Saks which I will mention more later, and found that my thoughts were too disjointed for me to read today. So I eventually came home, where I ended up falling asleep.

Also, interspersed with these other issues, I've had the old urges toward suicide and self-mutilation return. I quickly turn my mind away from them, whenever possible. If I was to dwell on them, I might, for example, start looking up gun stores on the internet, or go to a gun store, or actually buy a gun - as I did years ago. But I know better now, and I do not want to die, so I tell myself, "there's the old thoughts again. Ignore them", and I try to push them away. That's not easy to do, but I try. The phrase, "The time to die is nigh", came into my head today, and I couldn't shut it off for hours. It was like listening to a cd player on "repeat", with these words going over and over in my head, nonstop. Right now it's still going on a bit, but it's in the back of my mind, where I have managed to push it.

I've also been hearing my phone ring for the past week, quite a bit. When it's not actually ringing. I will ask someone, "did you hear that?" or I will look at my phone, since it's a cell phone and when it rings the numbers come up on the screen. I will note that it is not actually ringing, put it down, and go on. Sometimes things like this happen, and they're minor so I do not pay much attention to them. However, combined with the hallucination of the woman in my bedroom the other night, and the various intrusive and paranoid thoughts, it looks like I am having some trouble that will need to be addressed. The increase in Seroquel might help, and I might be able to manage to keep up with my job while on this dose, if I go to bed as early as possible every night and take naps if I ever have the time.

I'd really like to return to college this semester. I was putting off the decision while I was looking for a job, because it was more important to survival that I find a job. Now that I've got a job, and since my job is willing to accomodate my college schedule, I would like to take classes. But I'm afraid, because with the befuddled way my brain is at the moment, there's not much hope that I could keep up with most classes. I know when my brain can handle school, and I know when it can't. Right now, I don't think it can. I might, however, stubbornly try anyway. I have to see if I can get the financial aid first.

Meanwhile, and probably because this stuff has been going on, I've been reading a book by a woman with Schizophrenia, in increments, at the bookstores. Her symptoms were mostly a bit different from mine. For example, she talked out loud to voices that she heard, which is something I never did if other people were around, because I wanted to make sure no one new there was something a bit odd about me. But in other respects, she and I have some things in common. And the book is well-written. So I wrote an email to my family and friends about this book, and included a link and an article with more information about the author, Elyn Saks.

Before, I conclude, however, I'd like to just address Ken's comment. I understand what you mean about people obsessing about illnesses. I know how that can worsen depression and also lead one to think that an illness is defining their entire life. However, I really do make conscious efforts to avoid doing that on a daily basis. I have an autoimmune disease called Sjogren's Syndrome and a chronic pain condition called Fibromyalgia. There was a time, years ago, when I constantly thought about how sick I was, physically. I don't do that anymore. In fact, I don't even get treatment for those illnesses anymore (although I probably should). I found that thinking of my self as a sick person all the time was horribly depressing. So, I understand your point.

I don't think I obsess about Schizophrenia, however. I do write here about it, because that is what this blog is about. But I also do other things with my life, like writing funny things that have nothing to do with any illness, building websites, working (or looking for a job, as was the case for a while), participating in discussions on feminism on internet message boards, and reading a lot of books, for example. So while I appreciate your advice, I think that the attention I pay to the Schizophrenia might seem greater than it is to people who only know me through this blog, but people who know me in real life and know other things about me, would know that I don't talk about mental illness all the time. In fact, some months ago, I stopped running the Schizophrenia support group I started back in October, because I did not have the energy to try to help other people with mental illnesses every Saturday anymore. I found that running that group made me more depressed, and did not really help me much at all. So, I understand your point.

Now, then, here is the email I sent out to friends and family about Elyn Saks' book:

Not just because of its effect on my own life, but because 2 million Americans have Schizophrenia (approximately, though there may be more), I wanted to tell you about an interesting author and her book on the subject. Her name is Elyn Saks. She attended Vanderbilt University, Oxford, Yale Law School, and now is a professor at the University of Southern California. She also has Schizophrenia, and wrote a book about it that I have been reading, called The Center Cannot Hold.

This page has information on Elyn and her book, and a video of her speaking at the college where she teaches:

Also, I just wanted to point out a couple of things about this book, for anyone who may be interested:
-Many, if not most, people with Schizophrenia cannot accomplish the things this woman has done in academia because their brains are not able to function well enough, enough of the time (It's not about her having better willpower than other people; she had good healthcare, and she was also lucky, and probably a genius from birth). I point this out, because, I have known people with this disease who cannot take care of themselves, or manage a job or go to school or do many other things that many people take for granted, and because sometimes I have been unable to do those things myself for the same reason. For instance, years ago, when I was starting to hallucinate, I was supposed to go to Smith College. Didn't happen. Couldn't happen. I have explained this a number of times, but if anyone has questions on the subject, just ask and I'll tell ya what occured.

-This book makes some really excellent points. In particular, she mentions that she hid her illness, instinctively, because she did not want people to think anything bad about her, or to think she was crazy, even long before she was actually diagnosed with Schizophrenia and new she had a real illness. I did the same thing, for years. So I'm sure a lot of other people have as well. There are two sides to that coin: if you don't seem sick, people like you better. But if you don't seem sick, you never get better because you never get the help you need to do so. Basically, it's not worthwhile to feign normalcy.

-Saks points out in her book that the beginning (or Prodromal) period of Schizophrenia is often mistake for teenage depression, anxiety or normal growing pains. This was the case with me as well. I have never seen anyone make this observation before.

-Stories like this one can provide much-needed hope to people with mental illnesses, for whom society as a whole doesn't provide a whole lot of hope other than 'maybe a better medication which will cure me will come out some day before I die, and I'll get that healthy life I always wanted'. It's very easy, particularly after you've been homeless, and/or dropped out of high school and/or college, and/or lived in shelters or the back of a car, and/or been hospitalized more times than you can count, and/or been committed by a judge, and/or lived in an Assisted Living Facility, and/or a group home, and/or an apartment owned by a mental health organization, and/or gone on disability because you can't work full time, and/or taken 2000 different psychotropic medications, and/or gone through years of therapy, and/or been stigmatized by much of the planet earth, well, it's very easy to lose hope under such circumstances. I have had all these circumstances occur over the years, so I speak from experience when I tell you that this book can provide hope to people who otherwise don't have much of it in supply. (Another excellent resource is the book and the movie A Beautiful Mind, about John Nash, though some naysayers claim he never really had Schizophrenia because he is so intelligent and he won the Nobel Prize, so they assume he wasn't really all that sick).

-People with Schizophrenia are often viewed as subhuman freaks of nature. This is not fair, right, or good, and should not occur in 2008, but it still does. I , myself, don't particularly like running into homeless people who stop talking to the voices in their heads only long enough to ask me for money, because I do not know how to help them. However, I do know I could very easily be them. If not for proper medication. (There, but for the grace of God and all that). So it's nice when someone puts a face to the disease and isn't afraid to talk about it. Like Elyn Saks.

Saturday, August 09, 2008

hallucinations have returned

Right now, it's 3 AM. But I woke up, and can't sleep. I've been trying to get myself back on a regular sleep schedule at night, because I have a part-time job again now. But at the moment, this does not seem to be very successful.

I've been hallucinating again. At first, it was just very minor instances of auditory hallucinations. There is a big difference, for me, between severe auditory hallucinations, where I am hearing people say things to me that they are not really saying, or hearing people on TV or the radio talking to me and sending me messages, and the minor kind - where I just hear a noise that is not really there. Lately the noise has been my phone ringing. I will be in my car, for instance, and hear the phone ringing. Even if I don't have my phone with me. Often, the phone is with me, but I look at it and see that it is not actually ringing. This has also happened when my sister was in the car with me, and she stated that she definitely did not hear any phones ringing, and I must be hallucinating.

Then, last night, a visual hallucination occured, which was very vivid and seemed incredibly real at the time. I do not often have visual hallucinations. When I have had them, it was usually because I was in the middle of a terrible psychotic break. Right now, I don't know why I would be having one. Perhaps it is due to the stress of trying to manage a new job, although, really, my job is not very stressful. Perhaps my Seroquel just is not working well. I don't know.

So I woke up last night, or sometime early in the morning yesterday, and I saw a woman, hanging from the ceiling of my bedroom, right next to my bed, by a rope, which was tied around her neck. She was clearly dead. She had long, brown hair, tied in a bun at the back of her head. She was wearing a long, white gown, of the variety worn by people in the colonial days, or Laura Ingalls. My first thought: Oh, I'm seeing a ghost. Second thought: I wonder who this ghost is. She must be someone who used to live here and died (perhaps I have seen too many snippets of stupid shows on the paranormal on A&E, though I usually turn them off right away as they disturb me). Next thought: This apartment building is not over 100 years old, and this woman is definitely not from this century, so she could not be someone who used to live here.

Thought that came after that: Perhaps she is Fern, my grandfather's sister, who killed herself in Texas when she was 19 years old and my parents were not yet born. I wrote a poem once about Fern, because I imagined that she did it by hanging herself, though I do not know for sure which method she used. I always was very curious about her, since, evidently, we had some things in common. She must have had a mental illness.

Next thought, more lucid than the others: I have never seen a ghost before. However, I have hallucinatd before. Therefore, reason and logic would suggest that I am probably hallucinating right now.

I then began the routine argument in my head about whether or not the person I was seeing hanging from my ceiling was really there, or whether my mind was playing tricks on me. I finally concluded that I was most likely hallucinating. And then, eventually, the dead woman disappeared. I managed to go back to sleep. A couple of hours later, I got up, took a shower, got dressed, and went to work. I made it through my five-hour shift, and then immediately called the community mental health center, which I had to phone about 8809 times, before I reached an actual person and not a busy signal or a voicemail. The medical assistant had gotten my voicemail, and she called me back to tell me that the doctor said it would be okay for me to increase my Seroquel, which is what I requested the doctor do. So last night, I went back up to 600 mgs. of Seroquel.

Seroquel is a powerful, sedating drug. I know a couple of people who get knocked out immediately by doses much smaller than the amount I am taking. I had forgotten that I, too, get knocked out pretty heavily by the 600 mg. dose. I used to have trouble falling asleep at night, but would sleep all day long on this amount of Seroquel. Obviously, now that I have a job again, I cannot afford to sleep all day. So that is a problem. As it is 3 AM right now, obviously the medications are not making me sleep through the night, but I know from experience that I am going to be tired all day due to the sedating effects of this amount of Seroquel on my body. Seroquel, howerver, seems to work for my psychosis, so I am taking it anyway, as I do not want to be psychotic.

After I got off work yesterday, and got finished with my two hours of calls to my doctor's office, I went to the bookstore, and read a little bit more of Elyn Saks excellent memoir of Schizophrenia, The Center Cannot Hold. I highly recommend this bo ok to anyone who wants to understand what this disease can be like. After that, I went to my mother's house and watched a little TV with my sister, then took the Seroquel early and went home to go to bed. My mother, unfortunately, took the opportunity to tell me that the person I had seen in my bedroom while I was hallucinating was clearly, "demonic". I told her I do not appreciate her telling me that I am possessed by demons, when she knows very well that I have a disease, and that I hallucinate sometimes because of that disease. My mother seems to grapple with this weird denial that I am actually sick, sometimes, so she chooses to believe that the problem is Satan, and not a neurochemical imbalance. Since she has been treated for many years for Bipolar Disorder, herself, and she is a registered nurse, I do not understand these bizarre accusations and beliefs. I usually just ignore it, but sometimes these statements she makes really annoy me.

Anyway, tonight, when I went to bed, I was afraid I would end up seeing the woman hanging from the ceiling again. I did not see her, however, which is comforting. I have, though, been having some thoughts pop into my head that would indicate I am not doing so well. When I'm not doing well, and I'm driving, I often think about crashing my car, in an effort to kill myself. This has been happening again during the past few days. The urge is not severe enough to warrant staying off the road, because I've had this urge many times before, and never crashed a car. The one time I did, purposely, crash a car (and total it), was when I was hearing command hallucinations telling me to kill myself, all the time, everywhere I went, for some time. So I ended up crashing my mother's car on the top of the Skyway Bridge, which is 150 high. I was trying to drive over the guardrail, so I would land in the water, inside the car, and drown, as that is what the voices and the urges were telling me to do. That did not happen, obviously, and this occured at a time when I was not taking any medication and I was severely psychotic. I have not crashed a car since then, and I don't believe I will do it again, though, sometimes, I am not sure, since the urge returns.

I've been having fleeting thoughts of suicide, lately, but they are not the kind of ruminations that I get when I am just really depressed. They seem more like the kind that erupt from the miswired part of my brain where the psychosis resides. Not that these two things - depression and psychosis - are separate, but in some ways, they are different. With severe depression, I get very serious thoughts of suicide, desires to die, and make suicide plans. When the thoughts are just coming out of nowhere, or where the reason for them is not completely clear - it seems to usually be more connected to psychosis than depression. I am depressed right now. I do not, most of the time, want to die, however. But I have been having that urge return, at moments, and then it goes away and I go back to whatever I was doing before it came up.

Well, I think this explains a bit of what I was trying to say, though some of these things are hard for me to put into words right now, and hard, always, to explain to people who have not experienced them themselves. Hopefully this was clear enough to make sense to anyone reading it. I will keep you updated on what happens in the near future. Hopefully, the increase in medication will help, and hopefully, I will be able to tolerate this heavily sedating medication and maintain employment at the same time. Keep your fingers crossed! Thanks, as always, for listening.

Wednesday, August 06, 2008

cleaning and other impossible, overwhelming tasks

I found a book today, at the bookstore, which I had heard about some time ago, but had been unable to locate at any local stores. It is called The Center Cannot Hold, and it is the story of one woman's life with Schizophrenia. I cannot afford to buy it, so I stayed as long as I could and read the beginning in the store. It is well-written, accurately descriptive in reference to the disease, and interesting. I look forward to reading the rest. Apparently, the author is now a professor at a university. How she managed to do that with Schizophrenia is beyond me. I do not understand how certain people manage to accomplish such great feats even with a disorder that destroys one's mind as much as this one does. I am sure that the type of medical care one can afford to get has some degree of influence on whether one can manage such a recovery. Which leads me to my current thought: the community mental health center, for all the good, kind, underpaid people who work there, is not the place for me to get the optimal psychiatric care for Schizophrenia or Schizoaffective Disorder.

I think I could get better care, and perhaps function better, elsewhere. I do not know this for sure, of course, but it is an educated guess. After all about a billion people go to the community mental health center I go to. Medicaid and Medicare regulations dictate which prescriptions are paid for and which ones aren't (as will also be the case at any other doctor I ever go to), and the doctors are mostly not real doctors, but are, instead, nurse pracitioners, who can only see patients in increments of 15 minutes or less, because they have hundreds of patients to see. Perhaps, it would not be any better any place else. But perhaps it would. I have considered, many times, going elsewhere to a doctor in private practice. I have not done it, because, mostly, I am used to the routine of going the the community mental health center, and I also don't have a whole lot of faith in psychiatrists being able to help me much more than the already have. More importantly, like many people, I do not have good medical insurance. I have Medicare, and it only covers eighty percent of costs, so if I go to a doctor in private practice, I will have to shell out the other twenty percent, something which I cannot afford to do right now. But what if one could, and I, because I did not want to take the initiative to try to get to a different doctor, never found out?

There are certain problems I have which I think, from books I have read, are common to people with certain mental illnesses, and are not just personality defects. But these particular problems have not been helped, at all, by the medications I have taken thus far. One of the problems is that I am incredibly disorganized. It's not laziness, it's that my brain does not DO organization like most people's brains do. I know this because other people with Schizophrenia have the same exact problem. I cannot do housework anymore, because the entire concept is so overwhelmingly complicated to me, that it fills me with an intense panic at the mere thought of cleaning, and I cannot manage to physically actually do it. I don't get the impression that my therapist or my doctor/nurse actually understand this is a real problem for me, even though I have talked about it endlessly. I think they just figure I can snap out of this if I want to, but I really do not believe it's that simple, because, for God's Sake, I HAVE TRIED TO SNAP OUT OF IT REPEATEDLY for a very long time.

Cleaning in increments does not help me. That is not going to work for me. That is what they recommend, and I understand it probably works for other people, but it does not work for me. What I need is someone to FIX MY BRAIN so that I can organize myself.

In addition to the cleaning problem, I don't bother to take care of things like hygiene anymore, because the thought of taking a shower is so incredibly tiring and so complicated that it overwhelms me most of the time, so I just do not bother. My therapist is great, but she seems to not understand that things like this are not an aspect of my personality. I was not always like this. This is a problem related to my illness, with which I need some kind of HELP. Because I am living in a disgusting state, in a filthy, corroded apartment with dishes that have things growing on them lying all over the place, clothes on every surface and every inch of the floor, clothes not washed in months, a kitchen I do not even ENTER anymore because I cannot handle the act of actually going in there, so I eat only fast food or things that can be eaten without preparation, on paper plates or Styrofoam bowls or in Styrofoam cups with plastic silverware. My therapist was telling me yesterday to soak the silverware. I did not have the heart to tell her that I have not actually used silverware in months. It is beyond the point of soaking things. I am going to have to actually throw all my dishes in the garbage because they are completely destroyed with mold and fungus.

This is, of course, not something I am proud of. This is not something I am writing about here because I really want people to know I live like this. It is something I think is a problem for people with certain psychiatric disorders, and with which others might relate, so I am writing about it for them - the people who don't write about it, but do live through it every day. I also just want to point out, it's not like I am a pathetically lazy person. It's a mental issue, and one which I do not know how to solve, and apparently, neither does anyone else who I go to for help.

I have the same problem in my car. My car is filled with stuff - junk, empty cups, food wrappers, clothes, all variety of trash, books, notebooks, papers, mail....just stuff of all kinds. I stopped cleaning it out regularly months ago when I decided I just couldn't deal with it anymore. My desk, at work, used to always be a disaster area, because I do not possess normal organizational abilities. I am trying, at my new job, not to let this problem become obvious, as it did in my last job, where people actually discussed it behind my back.

I also had this problem with college work. I failed my math class last semester, because no matter how many times I stared at the book, or how many tutoring sessions I went to, I could not manage to understand the concepts, remember them, or implement them on tests, and this was not even a college level class. Also, I had to drop a Biology class because I could not keep up and was failing that. I have never failed any kind of class or schoolwork in my entire life until this past year. I don't think that is a coincidence. Right now, the thing that is preventing me from getting a degree is that I cannot do math anymore, and I cannot do the science either, apparently. So I will probably never get the degree I've been working on, off and on for fifteen years. Yes, I actually started college back in 1993.

I just don't understand why, with all the medication I am taking, I still have these problems. I also still have horrible, intrusive, disgusting thoughts that are vile in nature, which I despise having and which have plagued me pretty much for my whole life. Thoughts about things that I do not want to think about come into my head. Anafranil was supposed to help this, so I suggested the doctor/nurse put me back on Anafranil recently. She did. It is not helping with this problem.

And then I have this horrible, overwhelming, sense of despair and doom. With this painful loneliness and longing to not be so incredibly isolated and alone in the world as I am, but no idea how to fix that situation. That's why I write this blog. I write because I have no one to talk to about these things. So I write words that maybe no one will read, or maybe someone will, but either way, it helps to get it out somewhere. Because sometimes the pain inside me is suffocating and I cannot bear it all alone anymore, even with the assistance of my therapist.

I am sorry if this post sounds a little gloomy. I just wanted to point out some things, that I think are problems I'm having. My sister came into the apartment the other day and saw the mess I have been hiding from the world. She said, "You do realize your medication is obviously not working, right? Because you are obviously in a severe, severe state of depression or you would not be living like this." She is correct.

But what can I do? Go back, ask for another antidepressant, switch again, go through weeks where it is not yet effective, wait to see if it ever does work. And which one should I take. After all the doctors I've seen in all the hospitals and doctors' offices I've been in over the years, there are not a whole lot of antidepressants I did not already try at some point in my life. And trying to remember whether one worked or not is futile, because I do not have a memory that can handle that database of information. I have no idea which ones ever helped or did not help or why I went off them all, and my medical records are spread out in dozens of locations in several different states across the country. Since the doctor/ nurse can only see me for up to 15 minutes at a time, once a month, she doesn't really have time to track down dozens of medical record files spread out across the United States. So she just guesses about what will work. Or asks me what I think would work. And I guess. And that, it seems to me, is not the best way to be doing this. I am getting very frustrated, as I am afraid I will not be able to maintain my new job, or any other job, for much longer, and I will end up homeless again and in some hospital ward, locked up, because I cannot function. I have been in that situation multiple times, and would prefer to not fall into that type of fate again.

Thanks for listening...

Tuesday, August 05, 2008

New job, Disney trip, and troubles with housework

Well, I decided on the job issue (though I hate making decisions of any kind), and took the job at the college, which is in an office, answering phone calls and using a computer. This is something I know I can do without great difficulty. Being a home companion to disabled people was not.

Also, the home companion agency is a one-woman-run company where my boss would also be the company owner, the CEO and the human resources department, all wrapped into one, so, if I had any complaints or problems with anything, I would be screwed. Also, she has only been in business for a couple of years. Also, she does not appear to follow up on calling when she says she will and is generally not reliable. Also she wanted me to work in homes that are 45 minutes to an hour away from where I live, she was not going to pay me for gas, I have no air conditioning in my car so, I, and the people I was to transport, would be very hot, and I would have to increase my car insurance for the liability issue of driving people around, but she failed to tell me this.

So, because the college is a reliable institution who will give me a definite paycheck, even if it is the size of a paycheck one gets for flipping burgers at McDonald's, and because the job duties for the college job are things I am comfortable doing, I decided that would be the best thing to take.

I started yesterday, and it has gone pretty well thus far. I still have some things to learn with the computer software system they use, and it will be a little while before I really know what I'm doing, but that is true with any new job. At the same time, I am not really used to the act of getting out of the house at a certain hour of the morning, looking presentable for the public, and keeping up appearances in general as one must do to keep a job. I think because of my general depression, which has, recently, been rather overwhelming, and my problem with generally being overwhelmed easily by the duties of every day life, I have let myself basically fall apart in recent months. It was easy enough to do. My boyfriend moved out, I had no one coming over, and I don't care much about how messy things look when I'm the only one here besides the cat.

I also always find things that are infinitely more interesting than doing the dishes - like making webpages about the religion I invented, or going to the bookstore for six or seven hours to read, or watching TV - which end up replacing the washing of the dishes and the cleaning of the apartment, and the doing of the laundry. This is not a good situation of course, because neglecting all these duties eventually leads to a very disgusting situation that is an epic disaster beyond comparison. And that is the state my apartment is in right now. I have absolutely no idea how to clean it up. The mere concept of doing so overwhelms and terrifies me, so I do not even attempt to try it.

I know this probably sounds to someone reading this like I am just, plain lazy. But that really is not the case. I have even asked my therapist if she thinks I am lazy, and she does not believe I am. She knows me pretty well, and I think her opinion is reliable. It's not that I lack ambition, or that I want to lie in bed and do nothing all day. It's just that I don't feel quite capable of tackling a mess of this magnitude by myself. If I could, I would hire someone to help me clean up. But they probably would walk right out when they saw how bad the place looks. It is unfortunate, but I learned these lousy housekeeping habits from my mother, whose home is always a total disaster area - much like mine is now. I'm not using that as an excuse, or anything, just mentioning it because I think when you grow up in a home where there is no routine cleaning going on, on a regular basis, you never learn to do routine cleaning. I never learned it. My brother, somehow, learned it on his own or from my dad, because he's a neat freak and completely opposite of me in this regard. My sister (the one who is 26), is a messy slob like me and my mom. I don't really understand this, because in other aspects of life, we are not compltely dysfunctional human beings. But our housekeeping skills are really beyond the pale.

Having said this, I will, of course, clean my apartment, eventually. I know that I must, and it is a matter of forcing myself to face the disgusting mess and not let the mess overwhelm me.

Moving along to other topics....I mentioned in my last post that I would be going to Disneyworld with my mom to try to cheer her up about the death of her dog. As usual, going to Disney with my mom presented many difficulties, and it was not without humiliating moments of public screaming scenes, with my mom being the only one screaming. She told off the hotel staff at great length, which led to them giving her a free ticket to Disneyworld parks, and that shut her up. She screamed at me, because, as always, when things go awry, it must be somehow my fault, or, at least, that is how things work in her mind. I did go back to the hotel early the day we went to the parks, but that was mostly because of heat and exhaustion, and just partly because my mom was driving me nuts.

We did have fun at times. We went on rides, and watched shows, and tried to enjoy ourselves. The embarassing public scenes just put a damper on things. My mom has a very limited amount of tolerance for people of other nationalities than AMERICAN, and she pointed out to a few foreigners at Disneyworld that their behavior was not American enough. One group was kneeling on a blanket outside, praying to Allah, because they were Muslims. My mom took the opportunity to stop and sing, "My Country Tis of Thee", to which she knows all the words, to these people, reminding them that "This is AMERICA!"

Other than such scenes of racial tension, all was okay most of the time....It's very hard to make my mom happy, because she generally finds nothing but problems wherever she goes, and endless things to complain about, so she pretty much stated that the entire trip was a horrible disaster and she did not enjoy herself. But that was to be expected, and is just par for the course. In truth, she did have a good time, at least during a few select moments. She just doesn't want to admit that.

On to other website for the Church of the Righteous Heathens, which I recently created, has been up for a few weeks now, and has not managed to elicit one single donation of one cent from anyone! This is unfortunate, because I was following the advice of L. Ron Hubbard, who said once that the way to become a millionaire was to start a religion (and this seemed to work for him quite well), but, alas, it seems to take some time for the money to start rolling in. Good that I have an alternative, and more accepted form of employment, to pay the bills while I wait to become a famous and rich Prophet of the Feminist God.

Please note: Whereas, when I was psychotic, I really believed I was Jesus, I do not, now, really believe I am God or a prophet of God. This is a joke.

Well, I think I've updated you on recent events, and be sure to check back again soon as I feel the writing bug crawling around in my gut, and I will most likely be back here within a few days. Thanks for listening, and, as always, your comments are appreciated.