Belated Update

The reason I haven’t been writing here is that I’ve been posting on the NAMI schizophrenia message board a lot. But what I need is to find a balance between posting on message boards and writing this blog. I think my psychotic symptoms may be getting worse. I’m starting to feel a little paranoid and just uncomfortable in a way that’s hard to explain. I see my therapist on Thursday, so I will talk to her about it then. I think my symptoms started getting worse when I began distancing myself from my belief in a higher power. I think for my mental health that I personally need to foster my faith. I haven’t been praying lately, so tonight before I go to sleep I will start praying again for family, friends, people in general and the voices too. I’m not sure why I stopped because I always feel better when I pray for others. And being pretty isolated praying cuts through that isolation. When I pray I feel loved and loving, safe at least for a while.



Christina Bruni has brought up in her blogs her need to send out a positive message to people who suffer from schizophrenia and to their loved ones and I think she is right, but I’m afraid I’m still caught up in the psychosis. My blog is a personal journal and will show some of the negative sides of schizophrenia. I don’t mean to bring anyone down but it’s important for me to try to be honest about my experience with this illness and this is the only way I know how to be right now. So while I cheer Chris on, I have to struggle along behind her. She has worked hard in her recovery and I admire her example. I hope some day I can be as far along in recovery as she is.



I went to the NAMI schizophrenia board to cut down on some feelings of isolation and to offer help to others, but strangely I’ve felt isolated even there. I started writing about my belief in the existence of aliens. I still believe that I am telepathically connected to them, that they are “the voices”, but I know I sound delusional writing about it and I wonder--is it good for me to continue believing this? Or should I tell myself that schizophrenia is a purely biological illness and that the voices are just some kind of mistaken impression, an auditory hallucination? It would be a great comfort to believe that and people who recover do believe it as far as I can tell. Also can you recover and still hear voices (or have auditory hallucinations) because I have no way of knowing whether this is permanent or not. When I’m depressed I give in to the belief that they will never go away. But I’ve also heard, I think from one of Christina’s blogs, that a certain percentage of people stop hearing voices by the time their in their 50’s. That would be amazing. Sacred silence. Well, I can continue to take my medications and go to therapy and hope that that’s what is in store for me.

Why have I been feeling isolated on the NAMI message board? Maybe because everyone is very polite and won’t challenge any of my beliefs when I almost wish they would. Not to fight and spread ill will, far from it, but to deepen my understanding and maybe change my perspective. I started a thread called Living With Voices (I think) and invited anyone to talk about their voice hearing experience. About four people said they heard voices and I struck up a good dialogue with one of them, a very nice man who believes now that his voices are just hallucinations. And I found myself wishing I could be like him. Today another very nice man emailed me and we then chatted on Yahoo Messenger but both of us are convinced that the voices are real, each with our own particular slant on the particulars. But what good does that do us to believe in something that hurts us?

I hope we do become better friends. He is suffering so much and so are others and I want to be able to help him and them. Do I reinforce ideas that are ultimately harmful when I say I believe the voices are real? It would seem so. But it also starts to cut through the feeling of being so isolated. I mean I don’t talk to anyone about my beliefs except online and sometimes to my therapist. But while I’ve been writing too much on the NAMI board about aliens, I’ve also been feeling more psychotic and detached, not a lot, but enough for me to notice. One thing you learn to do when you’re trying to recover from psychosis is to be sensitive to any danger signs--an increase in voices or their negativity, delusional ideas, paranoia. It means that if the symptoms persist or get worse that you have to engage in some kind of action: talk to the psychiatrist and increase the dosage of your med, talk to a therapist, find a support group on and off line. Lately I’ve been talking into a tape recorder as a form of private talk therapy and it isn’t perfect but it definitely helps. Talking aloud can be a powerful tool and then listening to a recording is very revealing of who you are and what it is you really believe. It’s spontaneous talking and in that way an honest portrait of yourself. And it’s good to have a spoken (in addition to a written) journal to refer back to and try to get a reality check when you need it.

I want to get back to doing craft work, mainly crocheting, friendship bracelets/ and hemp jewelry. I know it will calm me down and focus me, plus I’ll have created something which is a great feeling in itself. I just have to get back to basics. Craft work and listening to audiobooks are other mental health tools. Singing and playing guitar, reading, painting. Getting creative.

On Self-Esteem

“Self-esteem has two interrelated components. One is a sense of basic confidence in the face of life’s challenges: self-efficacy. The other is the sense of being worthy of happiness: self-respect.” Nathaniel Branden, The Six Pillars Of Self-Esteem, p.26

“High self-esteem is intrinsically reality oriented....In tests, low self-esteem individuals tend to underestimate or overestimate their abilities; high self-esteem individuals tend to assess their abilities realistically.” ibid, p. 46

Self confidence and a belief that one is “worthy of happiness” are, according to Mr Branden, the cornerstones of self-esteem. Mental illness attacks self-esteem undermining self-confidence and repeatedly challenging the idea that one is worthy of happiness. Those that survive severe mental illness at some point have to fight for their right to exist. Along with fighting for the right to exist comes the fight to believe that one is not “evil” or “a loser” but essentially good and equal to others who are good. For many, this is an ongoing battle sometimes fierce other times mild. It is this battle with the unseen and often unknown that pulls the sufferer away from reality and balance. Everyone needs to strive towards a healthy self-esteem but especially the mentally ill. But how do we as victims of psychosis have confidence in and self-respect for ourselves after experiencing various kinds of hell on earth?

I suffer from poor self-esteem but I’m a survivor and though I get tired I still fight each day to recover a sense of balance so that I can be a confident, creative, life affirming individual. But while I fight the fight I lose perspective. I doubt myself and unknowingly I reinforce the belief that I do not deserve to be happy. I need to question my doubts. Why don’t I deserve to be happy? I look at all the mistakes I’ve made in my life that have culminated in severe mental illness and I think I must be responsible for my own downfall. If only I had made better choices maybe I never would have gone down the path of mental illness. But really did I or does anyone deserve the torture of psychosis? I don’t believe so. And yet, somewhere inside, I must believe that I am the exception. I give in to my insecurity and depression. I sabotage my efforts. I get overwhelmed by what I should be doing but don’t do. I isolate myself from others.

I don’t do this intentionally. I do this out of habit and because I don’t have the awareness yet to take another course of action. In the philosophy of the twelve steps there is something called the Three A’s: Awareness, Acceptance, Action. Reading this book on self-esteem is yet another attempt out of many to wake up to what it is I do and what it is in my power to change. In the first year of my delusions and paranoia the voices used to say cynically “Remember to forget” and “Forget to remember”. I still suffer from this negative programming. I find myself learning something and then forgetting it. Hence, I am out of necessity repetitive. I value awareness even as I struggle to achieve it. I do see it as the first step. Without awareness there is nothing and no possibility for constructive change.

But still I’m avoiding the basic premise for self-esteem and that is that I deserve to be happy. If I don’t reinforce this idea then I won’t intuitively reach for it. After surviving the hell of active psychosis I learned to be grateful that I was no longer suffering acutely. The more grateful I felt, the less I suffered. I found times of contentment. Still, I couldn’t exactly call myself a happy person. I wasn’t miserable and sometimes I felt good but I knew and know now that I am not truly happy. And part of why I stay in this not quite happy state is that I don’t take the time to consider what it is that would make me happy. Or rather I have some idea (a clean house, creative work, a friend) but I don’t take the practical steps needed to make my idea of happiness a reality. I don’t take the time to visualize myself as a successful person. I accept a kind of limbo existence, sort of okay and sort of not okay.

I have to unlearn the lessons my illness so painfully taught me. I have to learn to respect my courage, endurance and honesty in the face of overwhelming odds. I have to teach myself that I deserve love and happiness.

Darkness Visible

Tonight is the first snow of the season. I’ll wake up tomorrow to a white world, the first I’ve seen in months. It will be beautiful but I’ll be looking to see if the roads are clear. I go to see my psychiatrist for my prescriptions. I see him every three months. This visit lasts maybe ten minutes. He’s a nice man (the only psychiatrist I’ve ever seen) but I don’t feel comfortable talking to him about my illness. I just don’t know him that well. But lately I’ve been thinking about asking him about anti-anxiety medicines. I’ve been thinking a bit too much lately about death.

I finished reading Darkness Visible. Styron writes about death, his desire for it, friends who succeeded in committing suicide and other famous suicides. He stresses that the word depression does not cover the intensity and misery of acute depression. Many of his descriptions could also describe acute schizophrenia. I’m writing through the fog of a poor memory and dulled feelings but I remember some of what he writes about. I, too, felt suicidal and took time to consider how I would kill myself. He stopped himself and went into a hospital (which he said really helped him) and I just waited it all out while increasing the anti-psychotics to the maximum dose. It was so hard to go to my psychiatrist then because he (sensibly) raised the dose gradually and I had to wait and wait until I finally began feeling better. Now that I remember it, it was a drug called Provigil that finally snapped me out of the worst of the depression. My doctor prescribed the Provigil to counteract the soporific effect of the Zyprexa.

I was so miserable. I remember going out to eat with my brother and crying at the table part way through the meal, something I never did with him. Part of why I was crying was that I knew there was little he could do to help me, my isolation at the time was so complete but I needed to reach out anyway. It was like calling out in the dark. He was kind and gentle and said I could come visit him anytime. Ultimately I knew I had to work it out. For a while there the only thing I could do was lie down on the couch and listen to hours and hours of audiobooks ( I couldn’t watch tv or read much), sometimes I crocheted while I listened. I listened to stories. I needed to get out of my life and into the fantasy of some other more interesting, less painful life or lives. The pain still broke through but I fought against it. To listen and rest or to listen and crochet was enough to keep me in the world. The highlight every two weeks was getting more audiobooks from the library.

Darkness Visible is a short book but it is a good book. At one point Styron says that his experience of incapacitating depression was almost indescribable, elusive but here in writing this book he takes the courageous approach and not only shares with his public the fact of his illness but tries to describe the experience to the best of his abilities. And he has knowledge, skill and talent working for him. This is a book I want in my personal library and I recommend you read it. The book was published in 1990.

Does he succeed in making darkness visible? He touches on it and writes well about it but there seems to be so much more that needs to be said. I’m collecting memoirs from people who have suffered from mental illness. The more memoirs, the better. As Styron points out mental illness is individualistic rather than uniform. The world needs people to speak out about their experiences with mental illness, so we can get past the stigma and move towards better and better treatment, maybe even a cure.

A Brief Note

I did two things today, I read the first 17 pages of the William Styron memoir Darkness Visible and I saw the film SICKO by Micheal Moore.

I know of William Styron because I read a very good book of his years ago called Sophie’s Choice. There was also a very good film done of it starring Meryl Streep and Kevin Kline. I recommend both, but I picked up Darkness Visible at the library because it is an account of his experience of severe depression. I hadn’t known that he had suffered from mental illness. It’s a short book, a mere 84 pages, but so far he writes convincingly of the first major symptoms of his illness. He writes of “panic and dislocation, and a sense that my thought processes were being engulfed by a toxic and unnameable tide that obliterated any enjoyable response to the living world.” (16) He also writes about sleeplessness and “confusion, failure of mental focus and lapse of memory.” (14) This breakdown occurs while he is in Paris in 1985 about to get a $25,000 award. He makes it through the award ceremony, lunch and a publicized visit to a newly opened museum for Picasso but just barely and that is where I stopped...

I have experience with severe depression, mainly during the months after I came out of my major delusions. I remember feeling suicidal because of it. So I can identify with the image of thoughts being engulfed in a toxic force but for me that toxic force was most especially the schizophrenia. The depression just made it much harder to function. I almost dropped out of school. It’s weird, I still get depressed but it’s qualitatively different from before. I was so raw then, just coming out of my third and final psychotic break. Now, despite the blues, despite the anxiety I have more hope than I did then. There is some fragility but no more being devastated. This is an important difference to me.

More on this and SICKO hopefully tomorrow.

Hillary, Iran and Iraq

I didn’t start out picking Hillary Clinton over the other democratic candidates for president. In fact I felt ambivalent about her. But lately I’ve been turning more in her direction. I found out this week that she is the frontrunner and likely to get the nomination. This surprised me somewhat. Frankly, I didn’t have confidence in the American public to support a female candidate. I want to support a candidate who has a strong chance to win against a republican candidate. And whoever does get the nomination is the one I will support. I just watched a recent democratic debate with all seven candidates and I thought Ms. Clinton held her own fairly well. I’m willing to give her a chance in the next couple of months by paying closer attention to her. Does it matter to me that she’s a woman? Yes, it does. I think it’s long overdue. I think more qualified women should represent the population considering that about half the population is female. Hillary Clinton is in a unique position of having been the first lady of a popular (obviously not by all) president. She is thoroughly familiar with life in the White House and life in the Senate. Her husband is a very bright and capable man who could be an invaluable support to her as the first female president in U.S. history. I’m not saying she’s perfect but if she’s got a chance to defeat a republican administration, she’s got my vote. And I’m not saying that democrats are perfect but compared to Bush and his associates they are quite a few steps in the right direction. And the hard fact is that the U.S. is a two party system (independents don’t cut it yet), so there isn’t a lot of choice. Sometimes it’s a question of going with the lesser of two evils. Other times it’s just common sense.

All this speculation about the Bush administration pushing for yet another war, this time with Iran, is very disturbing to me. We are already overextended in Iraq and Afghanistan and under protected at home. Hillary and several other candidates stressed the need for diplomacy which I think is essential whenever interacting with another country, especially a potentially hostile one. Get to know the opposition, especially the cultural orientation, be respectful but firm and learn to compromise if it’s necessary. Iran says it wants uranium to create nuclear energy for their country and not to have a nuclear bomb. Many Americans are highly suspicious of this. The fear is that Iran, an anti-Western country, will become a nuclear power and will supply muslim terrorists with nuclear weapons, especially terrorists in Iraq. The facts are that Iran is supporting the insurgents in Iraq and I can see why people are nervous over the association but the utmost caution is needed for this very delicate situation, not threats of war.

Iran is a very ancient country, 5,000 years old. It’s not surprising that it should be a conservative culture considering its long history. In comparison the United States is a newcomer, powerful, foreign and intrusive but lacking in historical credentials. I think Iran deserves a certain respect. It has a rich past and a vital present but I do not believe in the current regimes religious and cultural repression of its people, especially women and young people. But it is not my country or my culture. As a pacifist I don’t believe that they should be supporting the Iraqi insurgents but neither do I think that the U.S. should be in Iraq aiding and fighting in foreign civil wars. Both sides are irresponsible in resorting to and supporting violence. When the irresponsible rule wars and repression and civil rights abuses are planted in fertile ground. And violence rains down openly and covertly.

My family are democrats but they are not pacifists. They still believe that war is sometimes necessary. Even my brother states plainly that while beginning a war in Iraq was a big mistake that we have to stay until the area stabilizes which might not be for a long time. I don’t voice my opinion on this to him because he would become derisive and argumentative but I think we should leave. We stirred up a hornets nest and now the Iraqis are fighting each other and us and it’s a horrible mess. I can see how some Muslims could look at the U.S. government and army as being presumptuous, intrusive and arrogant. I hate thinking of the American soldiers over there getting killed or being maimed because of a misguided patriotism. They shouldn’t be there. It’s not their country or their culture (and I’m afraid too many of them are still ignorant about the people, customs, religion, language). I want them to come home. They have not succeeded in eliminating terrorists, quite the opposite they have given terrorist sympathizers a focus to fight with and a place to organize. And it is the Iraqi men (for they are the ones doing the fighting) who are perpetuating civil war in their country to the point where the only viable solution seems to be to cut the country into pieces. I’m horrified by the death and destruction but I’m also disappointed in the human spirit that makes killing and maiming a legitimate approach to conflict, still.

Loner Thoughts

I’ve decided to try something new. I’m going to try to write in this blog once a day, long or short, for the next couple of weeks. I find that it improves my mood to write to you. I guess I already knew that writing is therapeutic, especially writing in a blog but as with most lessons, I need reminding and review.

On my way to my brother’s house I was pulled over by a policeman. I gave him my license and registration and when he asked if I knew why I was being pulled over I said no. Turns out my rear brake lights are almost all not working. He gave me a provisional ticket: if I get the problem fixed by Monday evening and go to the police station to prove it, the ticket won’t be valid after that. I’ve made an appointment to bring the car in to the last place I went on Monday morning.

I was unnerved by it nonetheless and began to worry--should I drive to the next town with my brother so that we can have lunch and go to the library? Would it be safe if people couldn’t see my brake lights come on when I braked? Would I be pulled over again? And even--would the car break down on the way there or back? I decided to go anyway. I decided I needed to get some books on coping with anxiety because that was what I was experiencing right at that moment. When we got to the next town I had my brother check out the rear brake lights. I wanted to know if all the brake lights came on when I turned my lights on (which I hadn’t done before), he said they did. That reassured me that people would be able to see my brake lights on the way home.

During lunch Rob talked about his friends in town and the bar scene on Halloween. I mostly listened. I asked after the young woman who was hearing voices. Someone had her brought to the psych unit of a local hospital one night a month ago because she was getting out of control, but she soon returned to town and the bars and her friends. Rob said she still wasn’t doing so well. It remains unclear what her diagnosis is and whether she’s taking the medication she was given. And I haven’t started the message board for the town yet. I’ve been avoiding it because I’m not sure how to set it up and that uncertainty just got swallowed up into Fall depression. And sometime during this depressed avoidance time I learned from my brother that a teacher at one of the colleges committed suicide by jumping off Niagra Falls. My only contact with town and the schools is through Rob and it’s becoming clearer that a community message board might help. It might have helped that man. I’ve got to start work on it tomorrow.

At the library I went looking for books on coping with anxiety and building self-esteem. There were quite a few so I picked up three on fear and two on self-esteem (one of which is a book by Gloria Steinem called Revolution From Within). I also found by chance two interesting looking books: Darkness Visible - A Memoir Of Madness by William Styron who is a major novelist in his own right and Party Of One - The Loners’ Manifesto by Anneli Rufus. It was Party Of One that I started reading, not ready to face the anxiety or self-esteem books yet. I’ve read the introduction and already I am identifying with the author who is a confirmed loner. She’s making me think and laugh too. What’s she’s making think is maybe it’s okay that I’m a loner. I’ve leaned in that direction since I was very young. I mean I had friends but only a few and then I had a boyfriend and no friends with Saul and then the same with Brendan. Then I was alone and except for having a young mother live with me for a short while I’ve been alone since I left Brendan twelve years ago. There was a time when I thought I would be with someone but then romantic delusions set in and I became psychotic. And now, I want to be alone. For now anyway. I’m an introvert, not anti-social just mainly non social and this book proves to me that there are others like me.

But hopefully most of them do not suffer from mental illness. I think my schizophrenia gets in the way of me being a healthy and well adjusted loner. I think for my mental health I need a certain amount of contact with others. But maybe not that much. Right now the only people I interact with are Rob, my therapist and the members of the Al-Anon group. It would be nice to have one local friend other than my brother. It would also be nice to have a mental health support group in town and meet a potential friend. But I do naturally pull away from it. I’m not exactly lonely. When I get involved in something, reading, writing, painting, songwriting, etc... I feel nearly happy. If I’m motivated I can spend hours and hours alone and I’m okay. Now that I think of it, some of my happiest and most productive times have been when I’ve been alone. What’s hard for me to understand is that a lot of people are the opposite, that they don’t want to be alone and are more productive in groups than on their own. They have spouses and children and friends and coworkers and that’s what is normal for them. I have to resist feeling like I’m less of a person for not having people in my life.

Ever since I was little I wanted to be some kind of creative artist. If I could have my ideal life I would earn a living wage from my art and I would find someone to be my best friend and lover. I’d have a clean, organized home and cats and plants and still spend chunks of time alone working and studying. I would stay close to my family and be trustworthy and responsible. I would be grateful and happy and dedicated.

Okay, that’s it for tonight, back to the books...

The Day After Halloween

Talked to/with my therapist today for the first time in three weeks. Told her I was struggling with depression and low self-esteem; I could feel it as I talked to her. I expressed myself awkwardly, there were a couple of pregnant pauses and I felt darker than I usually am with her. She was practical and supportive and talked me through some things showing me where my fears were exaggerated. I told her about my discomfort at discovering at the last Al-Anon meeting that the group was made up of conservative Republicans. There were a few jabs at “liberals” and I thought, “I’m a liberal.” So I felt defensive which is probably why I kept my mouth shut. The group is really not supposed to push any particular religious or political views so this was unusual and I could understand why that rule was included. The group is supposed to be all inclusive rather than exclusive. It’s supposed to be a safe place where everyone can talk and resolve issues regardless of their religious or political background. The group was laughing at liberal Democrats, they just didn’t know that that meant they were laughing at me in a way. I felt a little annoyed and a little ashamed at the same time. There is one woman in the group who I’ve been trying to become friends with out of the group. She is a strong Bush/Cheney supporter and despises the idea of Hillary Clinton becoming president. I just pushed that aside. But at this meeting I felt self conscious and somewhat dishonest. I went to the soccer game instead of the meeting this week and I haven’t contacted this woman, Beth. My therapist suggested that I should be honest with her. And I think she’s right. I avoid and repress and that makes me sicker. It also made me think that my own prejudice was getting in the way of a potential friendship. Why couldn’t I agree to disagree? Maybe I can but I have to get past my own bias’ and insecurities. I think the truth is that Beth and I are a product of where we grew up and what our parents believed. I grew up in New York City, a stronghold of Democrats and Beth grew up here in Western New York, a stronghold of Republicans. But regardless of this, I like Beth and I always have. Why should that change because I disagree with her politics?

I talked to my therapist also about how I’ve felt more fearful this year than I can remember being. I’m afraid of accidents and disease and general misfortune. I have a near phobia about making telephone calls to anyone other than my family. I am afraid to drive my car, especially at night. J. told me that becoming more fearful of dying and death is a part of getting older. My response to that was “Well, that sucks!” And it does. Especially since the schizophrenia takes that fear and exaggerates it, holds onto it, goes over it. So I’ve become morbid. I’m still afraid that the voices want to harm me. I don’t know what happens at death but they have been able to put me in hell on earth, what could they do with my soul? Worse, the thought that I deserve to go to hell with them. I resist the concept of hell because it is completely hopeless and I believe in hope and healing but still there is that fear that I could be wrong. I have to resist and hold onto the positive, glass half full philosophy. I have to live in the present and value what life I have and try to use my time well. Tomorrow I will go to the library and look for books on building self-esteem and fighting fear. I have to accept the things I cannot change (my mortality and the mortality of those I love) and change the things I can, my own attitude and actions. Looking for books and reading them is a small action and yet just the thought of taking positive action lifts my spirits.

It is ironic that I am listening to Vin Scelsa’s “Idiot’s Delight” replay of his radio show (Sirius Disorder), his Halloween show. He started out with Jim Morrison singing “This is the end...” And then went to the soundtrack of Psycho. Seductive death to cold and calculated violence, insanity in either case. Halloween and humans playing with their fear, acting out and having fun. But I didn’t act out with them. I didn’t dress up or go watch people who dressed up and there were no children coming to my door for candy. Instead I spent a quiet night writing and watching TV. One of the good things about Halloween is that it’s a holiday where people get the chance to face their fears and desires in an innocuous way. It’s also a public acknowledgment that we all do have fears, that we’re in this life together. That’s something I lose sight of, that I’m not alone in having fears.

Fear is hardwired into our bodies to make us very cautious in times of danger. It’s a survival mechanism. Sometimes it serves us very well. We need some fear and it’s got to be available at a moment’s notice. But we can also create fear in times of safety and perpetuate it with over active imaginations. Why create fear? Even before I got really sick I would imagine worst case scenarios. I thought if I imagined it that it wouldn’t happen. Magical thinking. It’s also a way of preparing for bad things. We all know that bad things happen to people, it’s in the news everyday and yes, I think we do need to prepare for the possibility without becoming obsessive about it. I don’t like fear but I wouldn’t want to be careless with my life and other people’s lives because I wouldn’t slow down driving in a snow storm. But I don’t want to live in fear either.