Doing Better

Thanks Christina for being concerned about me. I’m doing better now. I increased my Abilify by a quarter tablet. I did it without consulting my psychiatrist because I felt self conscious but I will call him tomorrow and let him know. I wish I knew him better but our relationship is pretty superficial. I see him for about 10 minutes every three months basically in order to get new prescriptions. He’s the only psychiatrist I’ve ever had. In fact, he’s the one who diagnosed me when I was in the hospital overnight in 1998. He’s a short but dapper looking Indian man, polite but firm and sometimes I can’t understand what he’s saying because of his accent. Before I got insurance he was very generous about giving me free samples of Zyprexa and Risperdal and I was grateful to him for it. My impression of him is that he knows his stuff but I don’t really know him. All I know is that his wife is also a doctor and that he has a son who is a senior in high school and was a key player on the high school soccer team coached by my friend Richard. I also know he is one of the few psychiatrists in this area and that he travels to several towns each week. Richard says Dr. N. is a workaholic and he might very well be but I don’t really know. Still I wish it was my therapist who did the prescribing of medicine for me because she’s the one who actually knows me and my story.

When I started experiencing some psychotic symptoms right around Thanksgiving, what I really needed was a support group to go to but there are none close by. In fact, I’ve never been to a support group specifically for mental illness since I became psychotic over nine years ago. The closest I’ve come is Al-Anon but that’s only a partial fit. This is because I live in a poor, rural area. And now my anxiety has become bad enough that I don’t want to drive at night which means I’ve stopped going to Al-Anon. I realized that I will have to move to some city/town with public transportation, good therapists, support groups for mental illness and possible job opportunities. I’ve started doing some research online and so far I’ve found two possible places but moving is something that I know won’t happen for 2-4 years. And I need a support group now. I’ve written about beginning a support group before but never got motivated enough to actually start the process. Ideally, I would have personal experience with a NAMI support group and then get training from them to start a new group but then if I had access to a support group in the first place I wouldn’t need to start a new group.

I really believe that a support group in my town would benefit not only my town and the schools here, but this general area. Yes, I think it’s a great idea but can I be the instigator? I’ve picked out where I’d like the meeting to be but I’d have to get permission from the local minister. I got her email address online and I’m planning to contact her after New Year’s Day. I’ll have to sell my point to her which is no mean feat for a recluse. And part of selling my point is telling her my story and then meeting with her.

This Fall I learned that at least one student here has been hearing voices. I also was very saddened to hear that a teacher committed suicide by jumping into Niagara Falls. A simple support group could help lessen people’s suffering and might have prevented that teacher’s death. But I have to be willing to not only ask for help but to follow through and put myself out there. And I feel shy and afraid to do it but if I’m going to be here for a couple more years I’m going to have to at least try mainly because I need the help to remain stable and recovering. I can’t keep up this self-isolation, it’s just not healthy and I know it and it’s just too easy to do it living where I live.

Speaking about self-isolation, I cancelled my trip to visit my parents in Florida for the holidays, so I’ll be on my own for about a month (my brother’s staying with them till mid January) and without a therapist till the end of January (it’s her mid term break). Why did I cancel? Mainly because I felt I couldn’t leave my cats alone for two weeks, especially the oldest one who is around 17. I should have realized this early and adjusted my plans to visit my parents for one week instead of two but I didn’t. Then I began feeling more psychotic and anxious and just wanted to stay home this year. My parents were not happy when I told them. For one thing, I don’t get to see them that often and for another thing, they don’t like the idea of me being alone for Christmas. But they’ve resigned themselves to it and I will go visit them in March for my mother’s 80th birthday.

Since I raised the anti-psychotic I’ve been feeling a lot better. Being alone isn’t getting me down right now. We had some really bad weather but it didn’t hit us as badly as some other places. I was expecting two feet of snow, a blizzard, but got more freezing snow and Richard came and snow blowed my driveway. He came inside afterwards and had a beer and we talked. That was real nice because I haven’t talked to him for a while and I do like him a lot. He’s always been kind to me and a really good friend to my brother. He and his wife have left an open invitation to dinner in the next couple of weeks. I really should go but my instinct is, as usual, to stay home. But, I’ll see, I might change my mind. I baked Richard a bunch of chocolate chip cookies because he said he prefers people to cook for him than to buy him presents, but I would like to make a spinach lasagna for him using Edam cheese, ricotta and parmesan. I used to have the recipe but I think I can figure it out.

Now, to get myself out of the house this week. I did some online shopping for my family and they should be getting those presents in the next few days but I’d still like to do some shopping for Richard’s family. I’d like to send something to Pam and J.P. (J.P. where are you? how are you?).

I’ve been listening to my old songs from 1995 to 1998 and writing down the words. I joined a song writing forum online but haven’t yet posted a song for a critique. Time to go back there. And I’ve been playing guitar and singing. I’m gradually improving. I have this one song I wrote about Dorothy from the Wizard of Oz and I keep going back to it but it’s kind of a mess. The rhymes are a bit off though they sing okay and the music is too repetitive but I have to do something with it. Actually, many of my songs are just fragments of a song and need reworking, but I’m more connected to them than I have been in a while.

I hope all of you have been doing well, staying safe and relatively happy. I’d love to hear from you.



(106 days without a cigarette.)

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.

A Question Of Faith

My parents and uncle are atheists. What faith they had in a higher power as children soon faded under the auspices of the Catholic church in New York City in the 1930’s and 40’s. By the time they were 18 they had decided that God did not exist. There was no heaven or hell. Death was final. The Bible was written by men who were all too fallible. They didn’t believe in faith, instead they believed in good works and personal morality. You do good things because it is the right thing to do and not because you will burn in hell if you don’t. They were more political (Democrats) than spiritual and invested their time in that rather than in church. Technically they were Unitarians but only because Unitarians embraced all religions and perspectives including atheists. Some of their friends in the neighborhood were Unitarians, but when they moved to another neighborhood they stopped going to any kind of church.

My brother’s favorite saint is doubting Thomas, the patron saint of skeptics. He admits that he does not know if a higher power exists or not; if the higher power did exist, he would need some proof of it. In the meanwhile and in the absence of proof he loosely follows a belief in the law of karma. So do good because it is the right thing to do but also because it will come back to you. If you help others, others will help you and you will become stronger. Good will generates good will. Still, like our parents, he is very critical of organized religion. Sees it as more often a force of destruction and hypocrisy than of healing and integrity.

Then there’s me, the only one in my family who believes in a higher power. I think I came to believe out of necessity. The trauma of living with an abusive alcoholic led me to Al-Anon and Al-Anon led me to consider the possibility of the existence of a benevolent power in my life and in everyone’s lives. I needed to believe, to have faith, and to hope. The alternative was despair. This need to believe became much stronger once I became psychotic. The voices, as usual, mingled the real with the false and led me to Christianity. I felt shocked and confused by this because my background was more agnostic/Buddhist. But in some ways this protected me from believing the delusions the voices tried to convince me of. I was not a holy woman or God’s wife or Jesus reincarnated as an abused woman and conversely I was not the Devil. I was Kate, neither very good nor very bad. But it wasn’t that easy and I went in and out of torment swinging from one extreme to another. The voices led me back to Al-Anon and to the daily readers which I read faithfully each day. During the months of severe depression that followed the delusions having a faith in a higher power probably saved my life.

But my faith is not fixed to any particular holy book. I don’t build upon a history of a chosen people. I don’t believe in Messiahs. I am freer than some because of this but also adrift. Lately I’ve been questioning my belief in God. The voices, these beings, are very much alive to me and more engaged in my spiritual struggle it seems than some God being. What is “God”? Don’t we all create our own particular versions of God. The aliens in Whitley Strieber’s books have referred their version of God as “The Source”. That makes sense, that God is the original source of everything. But beyond that they are vague and so am I. All I know is that God is much greater than me and much greater than the voices/beings. And God is in absolutely everything be it natural or man-made. But God does not talk to me like a friend or parent. God doesn’t talk. Instead I talk and the voices talk and other people talk. God listens, to me and all life it seems. How is that possible? I really don’t know. It flies in the face of human logic but I don’t believe humans have the last word in logic and reason.

I worked hard these past years cultivating the practice of gratitude. In order for gratitude to work you have to believe that something greater than yourself is receiving the gratitude, a higher power, God, Buddha, Allah, Krishna, whatever. To me God and gratitude are all mixed up together and that’s why I’m beginning to think that I may always believe in God in one way or another. I just hope I can deepen my understanding.

I read an article about Mother Teresa. The article was written in response to a book that recently came out containing “correspondence between Teresa and her confessors and superiors over a period of 66 years”. The letters reveal that for years and years until she died she felt somehow outside the presence of God. She accomplished so much but struggled daily with her own faith. I found this to be so sad and wondered if she had her own cross to bear in the form of mental illness. In the article a psychologist suggests that Mother Teresa’s despair might have been a form of self-punishment for becoming so successful, a kind of antidote to pride. She may not have heard voices but that doesn’t mean she couldn’t have been affected by them in her spirit. It is possible that the more dedicated to the higher power you are and the more successful you are, the more vulnerable you are to attack. But I don’t know.

I’m speculating and making assumptions. I don’t know, I believe. I can’t prove anything scientifically. I can’t make a doubting Thomas believe what I believe. I’m not sure that I’d want to if I could. Much of my beliefs are also surrounded by open ended questions. Questions like what happens to us when we die? I can guess all I want but I won’t know while I’m alive. I have to live with lots of uncertainties, we all do don’t we? But faith feels better and works better than fear for me (which I forget when I get fearful). John Lennon wrote in a song, “Whatever gets you through the night, it’s all right, it’s all right.” I’d have to add, whatever gets you through the night and doesn’t hurt yourself or others, it’s all right, but that wouldn’t have been a very good song lyric...

I think everyone has some kind of faith they just call it by different names. When I think of my family I don’t worry that they don’t have faith in a higher power. They have their own orientation. Logic and reason comfort them the way my belief in the positive side of the Unknown (God for lack of a better word) comforts me.

The Seriousness Of Competitive Games

I’m stuck, but it seems like I regularly get stuck. I have not been liking myself lately. But my own negative and self-centered thinking does me no good. Tomorrow is Halloween and very soon we lose a whole hour of daylight. Is my dark mood a result of the seasonal change? My sleeping pattern has changed. More days than not I’ve been sleeping all day. I don’t like that. And I haven’t been writing in this blog. But it hasn’t all been bad, I’ve spent more time with my brother listening to music. I’ve spent time learning favorite songs. I’ve been reading more. I’ve gone to several soccer games. I had lunch with an Al-Anon friend. The truth is I’m just aware that I am changing again and a part of change is ambivalence, part hope for the future and regret for the past. No matter how static we seem to be to each other, we’re always changing. We want to progress and we fear regression. Well, some of us do...I do. I don’t have the faith in myself that I need to progress. Some of the voices still want me to see myself as evil but I just can’t go there, but I can and do see myself as foolish and cowardly and this is enough negativity to pull me down. So what do I do? I remind myself that I have also been on occasion smart and brave. Well, actually I don’t do that but I should... I think I’m going to look for a book on improving self-esteem. I need self-esteem coaching because I have trouble with it.

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I went to a soccer game yesterday evening. It turns out to be the last of the season because the team I was rooting for lost. My brother’s friend Richard has been the coach of this local high school team for a few years now (in addition to being a nurse at a VA hospital). His son, who is a junior, is a star player on the team. And I thought while I watched the team work the field that being a coach for a soccer team is a very good thing. Richard has a love of the game and is a dedicated coach. He is also a hard worker and always has been. In training these boys and in coaching them he is giving them valuable lessons to apply to life, lessons about self-discipline, self-sacrifice, team work, the value of hard work and also how to accept losses gracefully. Life at its best is a teaching game. You will succeed and you will fail and you will make choices that define your character as you get older. The fun thing about games is that they can go on indefinitely and if you lose one, you might just as well win the next or at the very least you learn from your mistakes and play smarter the next time around.

I set up my chair on the right side of the field along with a growing number of other people. It was cold but I had come prepared with a couple of layers of clothing and gloves. One woman with her daughter set up practically on top of me which made me nervous. I didn’t want to talk to anyone and I discreetly pulled away a little. She kept up a running commentary of the game but I didn’t mind because she knew the players better than I did and it helped me to follow the game. My brother was on the other side of the field coaching from the side lines but that side was too crowded to set up in (he stayed standing), so I went off on my own. I was pleased that I had enough confidence to sit alongside strangers. If I had been paranoid, I would have felt too self-conscious to sit still which is a rotten feeling. I wonder if a lack of confidence and paranoia are linked? Anyway, I was happy enough watching the game but I also noticed the crowd around me. Most of them were rooting for the team I was rooting for (the community support for the other team was on the other side of the field) and it was funny listening to people trying to instruct the players on the field. Everyone was eager for a goal. But I couldn’t help but feel a kind of suppressed violence mingling with the excitement. Watching this innocent soccer match was like taking part in a mini local civil war. Several communities were involved, each backing their local team and underneath the fun there was a seriousness. Everyone was gambling for their team (both were fairly evenly matched), taking a risk to stand behind either the winners or the losers as fate and skill would have it. And in most people’s cases the players on the team were their children or grandchildren or friends. Something personal was at stake. Some piece of group identity and family identity was being forged here and people were in protective/defensive/offensive mode.

I was detached from it. I wanted Richard and his team (especially his son) to win but I did not invest much time, effort and emotion into it the way other people had. I was really just pleased that they had had such a good season (18 wins, 1 tie and now 1 loss) and would value Rich and his family a lot regardless of whether they won or not. In my book they already had proved their skill and talent as a team and as individuals. But I was also detached because of my illness. For many people schizophrenia is an illness fit for loners of which I am one for the most part. Being around people is not normal for me. But for the majority of this crowd normal meant being around people for most of the day either with family or at work. People adapt to being around people. I adapt to being alone with the voices. People take people for granted, friends, coworkers, family.

But perhaps my detachment affords a new perspective on human society. I saw the people at the soccer game as highly intelligent animals defending their territory in a mock battle. This element of discord, of potential violence is part of our history as animals. We are a violent species both towards ourselves and each other. If only we could settle our disputes with games of skill, intelligence and sheer luck and not in life and death combat. I can appreciate a good game and admire individual players but I cannot abide by games as preparation for war. The spirit of good natured, if serious, competition is one thing, training to kill is another.

Before the game started we all stood up while a recording of the National Anthem played which reminded me (and others I’m sure) of the war in Iraq. Our team in this case is the United States but I knew that the “game” of war was no game and that there were people in this crowd who had family involved with the war, some injured or even dead. I stood like everyone else out of respect to those people but the truth is I didn’t want to. I didn’t want to be blinded by patriotism to the point where I supported any war. I don’t believe in murder and to support war you must believe in the right to murder. That’s basic to the rules of engagement, to the rules of the “game”. I am an animal and I am afraid of other animals (I was a little afraid of this soccer crowd) but I would not turn my fear into violence. I am a peace loving omnivore. I’d rather be killed than to kill. I think we leave unexamined the great damage done to an individual who has killed, especially those who are trained and paid to kill in times of war.

I’m still amazed at how blood thirsty many “religious” people are, especially many American Christians. What part of “Thou Shalt Not Murder.” is unclear? And why do most people ignore Jesus’ instruction to aspire to the holy righteousness of God by loving those that despise you? Love your enemies is not like them or tolerate them and it is certainly not torture and kill them. Love is love, heartfelt and sincere. There’s no room for resentments and vendettas. Peace is a calling for all of us, but it means rising above the animal instincts of self preservation (which translates into taking sides and playing till the death, i.e. war). Sacrifice to end all war is the ultimate sacrifice. Sacrifice to continue power plays is wasted sacrifice I think. Jesus wanted to end human conflict. Would Jesus have stood up for a national anthem? I don’t think so. He followed his Higher Power and his Higher Power told him “Blessed are the Peacemakers.” Peacemakers don’t take sides. They unite, not divide.

The other team won fairly and fortunately none of the players were seriously injured. No one contested the win and there was no outbreak of violence. Everyone went home peacefully, some thrilled by the win and others crying for the loss. Maybe we’ve progressed. People are playing millions of games now where they might have in another time made many wars. Meanwhile the wars in Iraq and Afghanistan continue and most people in the world still accept legalized violence and murder with the same instinctive seriousness they give to a playoff between two young, local teams that are closely matched. If only that seriousness could be applied in the service of world peace instead of nationalism and the conflict that any kind of strong nationalism elicits from other nations/cultures.

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Ah, a few hours of written ranting is good for the soul. I’m feeling less stuck.

A Reaction To Brendan's Birthday

Brendan would have been 37 on the 20th. He was only 19 years old when I fell in love with him. I thought of him on Thursday afternoon while watching a high school soccer match. He had been the star of his high school team. I had seen him play and he had been beautiful, a smart, graceful player but sometimes hot tempered. The soccer team that year at the college had been unusually strong. Most of the players were good if not very good. Many of them had also been star players of their own home towns. They recognized each other having played against each other over the years. Now they were all on the same team. Unfortunately a large chunk of them would fail out of school pretty quickly including Brendan who I found out later had not been going to classes. So for some of them their first time living away from home meant an extended party. I was 27 years old and it was my first time living on my own and I fell right into that extended party. I was an irresponsible fool and I was sick though I only partially realized it. I had been hearing voices for about two or three years. I had been withdrawn, unemployed, living at home, going to art schools. Then I moved far into the country to be near my brother who that year was an assistant coach to his friend the coach. And so I met Brendan through my brother.

On the surface Brendan was very polite and respectful and rather quiet. He came across as a hippie, was into marijuana, playing the guitar and the Grateful Dead. He wore tie dyes and macrame necklaces and wrist bands. I mistook him for a peaceful person. It never entered my head that I could ever be afraid of him. Little did I know that Brendan had a reputation for being both a hard drinker and “a lean, mean fighting machine” as one of his closer friends put it a couple of years later. Most of the players on the team were respectful towards him. I was clueless. I can understand in part why I got involved with Brendan. I was lonely and insecure and he was vital and attentive and attractive but we were both sick and that’s ultimately what cemented the bond. But now I look back and I think, “Kate, how could you have done that?!”
I was not a shining example of virtue and yet I kind of thought I was a good person at the time. But almost from the beginning Brendan looked at me with a prejudiced eye, ignoring his own imperfections while using mine against me. He was someone who was consciously manipulative of people and situations. He had been manipulative long before I met him despite his youth. I, on the other hand, despite living in New York City, had almost unintentionally lived a sheltered life. I didn’t socialize. I didn’t use drugs. I kept to myself. I saw myself as an honest, creative person but I was also deeply ashamed of myself for not working, for remaining dependent on my family.

Why was Brendan manipulative? He grew up very differently than me in a wealthy suburb with Republican parents. He was the youngest and the only son. He had two older sisters. One thing I found out quickly was he disdained his parents, his mother openly and his father privately. He said that his father had been abusive towards him repeatedly, eventually he included, said in various ways at various times, that his father had raped him. I remember contemplating confronting his father about this but I never did. Brendan’s abusiveness towards me had a controlling effect on me and as the years went on I wasn’t sure what was really true or not. He had told me that he had a child by a former girlfriend, he told me he murdered a man to settle a cocaine debt and lastly he told me he had been raped. All of this would have happened by the time he was 18 before he met me. But at the time I believed him and it paralyzed me and I became afraid of him and self-protective. I became the scape goat for whatever happened to Brendan. He saw his father, mother and sisters in me and he would swing from a sentimental love to a merciless hatred. And he was that way, he would both defend his family and despise them almost at the same time.

All I knew was that Brendan had been abused and had become abusive and was a hardcore alcoholic because of it. But I had little experience with abuse and addiction and my inexperience left me wide open to attack. Brendan thought mistakenly that because I grew up in New York City that I was tough but I wasn’t. If anything I was soft and receptive and ignorant. I had even been warned by a couple of people in the City not to be so open. But open I was. I shared everything I had with Brendan before he proved his trustworthiness. My mistake and my choice. He was young and sick and I followed him because I was young (still) and sick too. What a mess both of us were.

But there were times when we just got along and liked each other despite it all and standing on that soccer field on Thursday made me think of Brendan then. It’s amazing that I’m still conflicted about him. I can’t accept that he’s dead. He didn’t deserve the last few years of his life and I feel guilty. I left him the last day of July 1995 and he died May 1999 almost a year after I became paranoid and delusional. I could have done more but he had hurt me in ways that made me just detach from him and his life. At some point I chose myself over him.

I realized yesterday that with this blog I’m actually doing a public 4th Step, trying to take a moral inventory of myself. And what have I found? That I am not as good as I thought I was, nor as bad as I’m afraid I am. I’m somewhere in the middle, neither a heroine nor a villain. What hurts is that I wish I could make amends to Brendan but I can’t. I have to sit with this and work it through. I believe that there is some kind of life after death and I pray that wherever he is, he has a healing reincarnation.

Return

I was proud of myself for getting to the airport and getting to Chicago okay and I was proud of myself on the return trip for getting home safely. Traveling alone can be both depressing and stressful but I managed it. My uncle met me near the baggage claim area. He didn’t look happy to see me but neither did he seem particularly dismayed. I got my bag quickly and we found his car. He drove me from the O’Hare airport to the hotel where he had reserved and paid for a two room suite for me for six nights. He took me out to lunch at a nearby sandwich place. Then he took me to a supermarket so that I could get some snacks. I got cereal and milk and bananas. He escorted me back to my room, put away the groceries and said he would return the next day again with the car so that he could take me on a driving tour of Chicago.

Chicago is situated north to southeast along the bottom of Lake Michigan. My uncle’s apartment and my hotel were about a block away from the lake and twenty five minutes north of the downtown by bus. My uncle first drove me north to his apartment complex and then continued to drive me farther north through Evanston and beyond. The farther we got, the richer the environs got. Landscaped mansions and very few people outside (mostly women pushing baby strollers or someone jogging). It was way up here in the wealthy suburbs of Chicago that my uncle took me to the Botanic Gardens. We walked for a while and then had lunch at their cafeteria.

I’m not going to go through the whole trip but suffice it to say my uncle gave me a thorough tour of Chicago, including several art museums which I love. He was attentive and talkative but we didn’t really click. I felt awkward at times and tongue tied. Here and there he would say fairly personal things about me and my brother and my parents, sometimes critical. I didn’t know how to respond and was mostly quiet. I think his main reason for having me come to Chicago was to show me his apartment which (if he doesn’t go into a retirement home) he will leave to me and my brother when he dies. Morbid yet practical. He had warned me that his apartment was a mess and I told him not to worry about it because I was used to it in my home and my brother’s home. He showed me where his important papers were and pointed out things that might be of modest value.

Seeing my uncle, whom I’ve never been very close to, in his private space made him seem all the more human and vulnerable, which was just how I was feeling myself. He told me that he rarely had anyone over except for a few close friends. His passions at home are reading and listening to music. Referring to his 30 year old furniture and cluttered rooms he said some people put their money into fixing up their homes over the years but that he chose to spend the money instead on going to concerts and theatre. In his way he was preparing me for the job I will have to do with his apartment when he passes away. But I find all this a bit premature. And ironic. I, who can barely take care of my own space and my brother who is the same... Personally, I don’t see my uncle staying in that apartment if he gets quite old but ultimately it is his choice.

My father and my uncle worry that there won’t be enough money left over to take care of me and my brother when they die. It’s something that will be out of their control. My uncle encouraged me to get a part time job saying that the added income could really help and so I will next Spring apply for help from VESID (Vocational and Educational Services for Individuals with Disabilities). If I can get a job and stick to it I think it will do wonders for me and will reassure my family. I hope VESID accepts my application when the time comes. It might sound strange but I like the idea of working for someone who knows about my disability but doesn’t stigmatize me for it.

I’ve suffered from this illness for years now but I’ve never been hospitalized for more than one night and because my family has some money I’ve never applied for social services. I haven’t been to a support group meeting for mental illness other than Al-Anon. And the tendency of this illness is to isolate and isolated I have been. I’m tired of it, living in a cocoon. I have to accept that I need help. I can’t do it all alone.

I was talking with my therapist on Thursday and she said my self esteem was pretty good when I first started seeing her but that over the years and due to the effect of the schizophrenia my opinion of myself has taken a nose dive. I started out thinking I was bright and perceptive but now I compare myself to others and keep seeing what I lack instead of what I have. I have to work on changing this.

A few days later... I’ve been sleeping too much again and the voices have been somewhat negative. Friday night I went out with my brother to hear a singer songwriter play. When I got home I picked up my guitar and starting writing a song and then another song. I didn’t get to sleep until early morning (I had had too much expresso while listening to the man sing and play). I made sure to record the song ideas on a cheap portable recorder so I wouldn’t forget it the next day. I really enjoyed singing and playing and I felt grateful when I finally did fall asleep. The next day I wasn’t feeling great but I did managed to make another better recording of the two song fragments in the studio. It struck me what a big difference there is between singing when I’m inspired and singing when I’m not. One has so much energy and the other struggles to sustain the minimum of energy. I guess all I need is to be inspired by a live performance each night (and drink a couple of large cappuccinos). That’s not going to happen but there are one or two open mic nights in town that I really should go to. I need to get up my nerve to be around people, most of whom have been drinking...Hey, I can do that for an hour or so...yes I can.

I hope everyone’s been well these past couple of weeks. Pam hasn’t written in her blog since September 6th. I think she’s in the hospital. I hope she’s okay. I miss her and her writing.

Next Stop -- Chicago.

I picked up a cold from my brother a few days ago and spent Sunday and Monday trying to sleep it out of me. It’s made me feel delicate. I even cried today. That’s something I haven’t done in a long time. I was watching a movie and at the point where the main character’s mother dies I began thinking about my own mother (who will be 80 in March). And suddenly I felt very sad thinking that I never did the things she had hoped I would do -- had a career and a husband, maybe a family of my own. When I cried I felt that old familiar bittersweet feeling from when I was a young woman and even the shocked hurt feeling from when I was a child. I don’t feel that very often. Why? I’ve lived through trauma in a relationship and in my mind and my reaction to it is to go numb. But then it also could be the result of the medication. And also just the negative symptom of the schizophrenia itself. Whatever it is, I don’t feel the way I did when I was young. Perhaps that’s just part of getting older too.

(Next day...) I wrote yesterday that the crying was bittersweet and that is true. Deeply sorrowful yet tender, open, even innocent. But I didn’t dwell too long there. I’m not sure that I could even if I had wanted to. I think I did want to stay there longer just to remember who I once was and who in some ways I still am. I’ve lost a lot of my memories due to this illness. Value your memories and the feelings they bring up because they make up who you are. I feel a little shadowy, a little thin. I wish there was some kind of memory therapist I could go to to retrieve my life. Sometimes I think I should spend some time each day just trying to remember. I do get the outline of a memory but much of the emotion is gone.

I rely on the anti-psychotic medications to keep me stable and they do, but what else are they doing to my body? I don’t really know. What I do know is that I don’t want to be lost in delusions and paranoia. And so I’ve made a compromise. Without the medications I would have an imbalance in my brain chemistry, with the medications I have less of one but still it is no cure. I have to face the hard fact that I have a mental disability. Why am I having trouble facing this right now? Perhaps it is because I am going to visit my uncle in Chicago starting on Monday for a week. That and getting this cold which has made me feel more vulnerable than usual.

My family is very small, just my mother and her brother, my father and my brother. The last time I saw my uncle was just about a year ago at my parents’ apartment in Florida. I don’t see him much at all but he wanted me to come visit him this year. He’s the first person, other than my parents and my brother when he lived in North Carolina, that I will be visiting since I got ill nine years ago. And I haven’t visited him in Chicago since I was 14 years old and that was when he had moved into his present day apartment (31 years ago!). Of course, I’ve seen him over the years but we’ve never been very close. We email each other but that’s as far as it has gone. This is an opportunity to deepen our connection and I worry I won’t be up for it.

My uncle, like my parents and brother, is a very bright, knowledgeable, and verbal person. He’s a retired English professor, loves city life because he’s so into architecture, classical music, opera and theatre. He actually has taken people on guided tours of Chicago for years now. He knows his stuff thoroughly. According to my mother, he is very fond of me. I think this has to do with his mother (my Nana) who I got close to towards the end of her life. He has told me that I remind him of her sometimes. I can’t see the connection right now but I feel honored by the comparison even so because I loved her too. She had a great sense of humor, was very honest and loved to read. She was perceptive and good with her hands (during the Depression she made all of her children’s clothes). But she, too, was reclusive, especially after grandpa died. I felt comfortable with Nana because she made me feel comfortable. Anyway, she doted on her son.

I hope I am up for the trip though. I should look at it as a small adventure. I just wish I was in better shape both physically and mentally, but I’ll have to make do and look on the bright side. The bright side is Chicago is a wonderful city and my uncle is a kind and capable man who will treat me well. He is already treating me extremely well: he’s gotten me a suite at a hotel near to his apartment. I will have time to myself each day (and he to himself) and I think that will really help me stay in balance. Though I won’t be able to go online, I’m bringing my computer because it has my journals, my encyclopedia, some music, an audiobook (Madeleine Albright’s The MIghty and The Almighty), poetry readings, and a course in Spanish. Also I can play DVDs. It will be like bringing a piece of home with me and that will comfort me. I know I’ll need that comfort. I’m used to staying in one place but this year I’ve been traveling more.

(Next day...) I saw my therapist today and found the visit reassuring. Except for a two year break I’ve known her since the first few months of my psychosis. She’s respectful, supportive, kind and smart and when I talk to her I generally feel bright and articulate. But around other people, including my brother and parents, I feel awkward often and a bit dumb. I’ve been worrying that I’ll feel this way with my uncle but talking to J. gave me some confidence. Back to looking for the positive instead of dwelling on the negative. I may not be as bright and knowledgeable as my family but I still have good qualities. And as J. pointed out, I do have two college degrees and I do know something about art. But the main thing is to have a good attitude, open and grateful. I will get to know my uncle better while he guides me through the city he loves. Instead of bringing myself down through worry I will stay hopeful that all will work out well. And it will be an adventure.

I also talked to J. about the message board idea. I was almost afraid she’d reject it but she didn’t. She’s a cautious person and she gave me tentative approval for it. Not that she has to but I would feel better if she supported the project. It felt good to air the idea out to another person and made me re-commit to the process of getting it started.

A Community Within A Community

I apologize to everyone who’s been stopping by that I haven’t been writing. Fall depression appears to be settling in and I’ve been sleeping more. I’ve also been trying to practice what I’ve been preaching--gratitude when things get negative. So far, it’s been helping.

I am 19 days, 20 hours free of cigarettes. I’m still eating too much and not exercising enough which is part of the depression pattern but I haven’t felt many extreme urges to smoke. Such a relief.

A week ago I invited my brother and his friend (who is an out spoken, kind hearted lesbian, a Democrat in a vast land of Republicans) to see a band in a nearby town. Despite my depression I managed to be social for a night and it felt good. At one point while the band was taking a break, my brother and I’ll call her Sam started talking about their mutual friends in town. One of the people they brought up was a 24 year old graduate student. She had told one of their friends that she was hearing voices. My brother and Sam both agreed that she seemed a bit mentally ill and that it didn’t really surprise them. But it did surprise me. In fact several people seemed to have emotional/mental problems in town and I found myself wanting to help this young woman. When I got home I thought about her. I remember how isolated I had felt when I first heard abusive voices. I wanted so badly for someone to tell me what was going on, someone who had experience with hearing voices. But there was noone and I withdrew into the illness.

I realized that I was assuming that this young woman was suffering from schizophrenia. Then I thought she could be suffering from bipolar disorder where hearing voices I’ve heard is also common. Regardless, I, the recluse, had little idea of how I could get in touch with her. I knew from my brother that she hung out at the bars but I had little desire to go do that because I have negative memories of drunkenness, because I’m very awkward socially and because I know I would want to smoke. Should I have my brother give her my email address and phone number? Would he be willing to do that? And what would I say to her if she did contact me? Then I went online to the NAMI schizophrenia web boards where someone had answered one of my posts. Something someone said there made me have a great idea: could I have my own message board for my town dedicated to mental health? If I did, I could put up the address around town and see if anyone would show up to post. The idea of generating a community within a community was exciting. I began to imagine creating a support group from there if there was an interest in it.

So I researched online to see if I could get a message board and found that there are lots of them. Too many, in fact, for me to deal with. I finally settled on a site called Delphi Forums. I could get a multiple message board for free but with advertising, which I decided that I didn’t want. So I went with Delphi Plus for $5 a month where not only could I have message boards without advertising, but I could also have a blog and a chat room. The problem is I did this on impulse and to host this forum takes more expertise than I have at the moment. I will have to go through all the help pages and figure it out. It will take me a few weeks, maybe a month before I can start to advertise the site to people in the community. So this is a project for me. But what does it entail? I will share that I suffer from schizophrenia with my community and I will offer a place of support for people to connect with each other online. Do I have the courage to be so open about myself with my town? My real motivation is to find support for myself and to give support to people in need. But am I ready?

A part of me feels ready, almost eager, to reach out and connect with others and another part of me wants to continue hiding away. I do feel ashamed that I’m not “normal” but I know this is preventing me from recovering. I shouldn’t be ashamed that I have a mental illness and neither should anyone else in town or in the schools. How will the stigma ever be broken if there aren’t people willing to come forward and admit that they suffer from mental illness and are still good people? How can people get the help they need if there isn’t a place to go to ask for help? Especially for students living away from home probably for the first time. And shouldn’t students be able to help each other by forming a support network? The tragedy at Virginia Tech would probably never have happened if there had been something like what I’m proposing.

When I had talked to my therapist about forming a support group in town for mental illness, she said that the counseling center at school had tried to do that on campus but that students felt too self conscious to go to it. The beauty of a local message board is that you can remain anonymous if you want to and still make the connections you need to make and get the information that could really help. All it takes to make the message boards work is a hand full of regular posters, even if it was just a couple of people that I helped that would be fantastic. But really I’m hoping that people can help each other by talking about their problems and ways of coping with them. Now that I think of it part of the inspiration for this message board springs from a message board site I discovered online for people trying to quit cigarettes and stay quit. There are a small group of regulars, most of whom have been quit for anywhere from 1 year to 7 years, and they really hold everything together by being supportive of each others and newcomers like myself. One man named Kevin started the site when he was trying to quit and stay quit. He even includes excerpts from his journal of that time in another section.

But the main topic of my message board will be mental health which is pretty broad. I want people to feel welcome whether they are suffering from psychosis or depression or anxiety or any kind of stress. I don’t expect a lot of turn out at the start, so I’ll have to hold up the forum myself and reveal myself to others. I know about schizophrenia, depression, physical, emotional and sexual abuse, addiction. I have a foundation to work from to reach out to others. I have to figure out what I want to say to this town and say it and stand by it. Then I have to invite the community to make the message board work by sharing their experience. How I advertise this message board will be very important. I need to catch people’s attention and challenge them. I don’t know whether I want to just put up a page and have sections with the web address to pull off or to still have a page and include cards that people can put in their wallets. One way is informal and another way is more business like. I’ll have to wait and see. All I know is if I do do this then I’ve got to really put myself into it and do a good job.

Just writing about it here is giving me some confidence to do it. It will give me a focus and keep me occupied for the Fall and Winter and I might be able to actually help someone in my community. And I might find a friend or two. I could stay hidden forever but what good would that do? Recovery means reaching out, giving and getting support. I think isolation is one of the top reasons why people don’t recover. There is power in numbers and power in sharing honestly.

The Place Of True Happiness (Gratitude/Modesty)

Satisfaction is not in smoking a cigarette or eating a piece of chocolate. I was aware of this when I smoked and I’m aware of it now when I eat sweets. I know I have to cut myself some slack about substituting eating some sweets for smoking a cigarette but I also want to look at the behavior because it’s the same addictive head set. I get more satisfaction out of drinking water, exercising and eating healthy perhaps because it takes some discipline and that’s also why I fall back into what’s easy and lose my way. I have to realize that I can’t just give in to instant gratification and expect to become happy and healthy. When I smoke or over indulge in food it’s a shallow happiness and it passes quickly. The final result is a sense of having let myself down. But where is that elusive happiness that I really want? I know it’s very close at hand and I know I turn a blind eye on it too often.

Today my brother was telling me about the troubles that some of his friends were having, couples breaking up, a friend having to sell his house to pay his taxes and other stuff. It was obviously starting to stress him out and I said to him “Try not to get too negative.” He said he was trying and then I said “Focus on the positives in your life.” And he said, “Don’t get New Ageish on me.” My response was “It’s true.” And I’ve found it to be so. When things get negative, I look to the positive. That was a lesson my psychosis taught me the hard way. I know how hard it is to look for the positive when negative thoughts and feelings are strongly present but that’s where real happiness lies. I know I have problems with mental illness, particularly withdrawal and poor self-care but when I stop and look around my living room I see/feel harmony everywhere, in the pictures on the wall, in the cats curled up and sleeping, in the bottle of water by my side, in the peace and quiet, in my essential goodness. Yes, I have made many mistakes but in this I am far from alone. Yes, there are still struggles to overcome but really I am okay. I’ve lived through hell and the relative calm of now is almost heavenly.

Christina Bruni interviewed me on the telephone yesterday and she asked what helped most in my recovery from the worst of schizophrenia and I think I said aside from therapy, support groups and anti-psychotic meds that practicing gratitude has been so important. As I’ve said before I think practicing gratitude is a form of prayer. When you are grateful, you are automatically humble and that humble place is a place of true happiness. In the span of everything you will always be a small part whether you realize it or not, but the part you play is also essential to the whole. Each life has value. The I Ching calls this practicing Modesty and it is considered a great achievement: “ When a man holds a high position and is nevertheless modest, he shines with the light of wisdom; if he is in a lowly position and is modest, he cannot be passed by. Thus the superior man can carry out his work to the end without boasting of what he has achieved.” (Wilhelm)

When I was in the acute stages of psychosis the voices tried to convince me that I was greater than I actually was, greater spiritually (Jesus) or greater in evil (The Devil) but I was neither. My true place was and is with the mass of beings in the middle between good and evil. Psychosis forcibly humbled me to the point where I had to get past my pride and reach out for help. Severe mental illness is a traumatic thing to go through but I see myself and others finding the light within the darkness. Before I was deeply unbalanced, caught in the egotism of being either too good or too bad. But gradually I learned to find a balance and a lot of that balance came from cultivating an attitude of gratitude. We take so much for granted. Our ability to use our five senses--sight, hearing, touch, taste and smell. Really it’s some kind of miracle. But it’s so a part of our being that we don’t focus our attention on it. When Brendan became paraplegic I began to realize how much I took walking for granted. It’s when we lose an ability that we start to appreciate just how great and amazing that ability was.

While I was suicidally depressed after coming out of my major delusions and paranoia, I remember watching a short film on television. It was about a man who could neither see nor hear and so relied on touch and taste and smell to give his life meaning. He spent his time weaving beautiful baskets and he even travelled to visit friends in foreign countries. He had learned how to make and read sign language purely from touch. And I thought to myself, My God I have so much to be grateful for and Isn’t the human spirit amazing? His life, despite his handicaps, had more focus and meaning in it than mine did. All my senses were still intact but I was miserable. I was taking too much for granted.

I learned this Attitude of Gratitude from Al-Anon. Their daily readers are full of focusing on what’s right in the moment instead of focusing on what’s wrong.
When the leaves change color in the Fall and are so beautiful, it is important. The way a hot bath makes you feel when it’s frigid outside is important. A good meal is important. A kind word from a friend or stranger is important. Having a home is important. The list can go on indefinitely. Seek and you shall find. It’s all around you and inside you. It just is. Something good is always happening. Just being able to take one deep breath after another is a wonder. To be alive is a gift. And we all know the gift is temporary which is why it should be valued all the more. None of us will live forever and if we’re fortunate enough to make it to old age, at some point we will start to lose those precious senses. Things will have to slow down but even then to be alive is a gift.

Nearly every night I send out this gratitude prayer to the Powers That Be: “ Thank you for this day and this night. Thank you for my life. And thank you for the lives of my family and friends. Thank you for all our lives.” And right away I feel comforted and safe and happy. Saying thank you is a big deal whether it’s to other people or to your version of a Higher Power. It puts everything into its proper perspective and it leaves a lot of room for goodness to manifest itself. I know bad things, situations, experiences, people exist, but if you look closely there’s always some redeeming virtue. We are not lost in a world of total negativity except when we allow it by focusing on it exclusively. Negative things can offset positive things. Even in misery a ray of sunshine can become a holy thing.

(10 Days, 20 hours Smokeless and counting)

Overcoming Temptation

There are heavy rains tonight and it is flooding downstairs and I am feeling stressed out. If I had a cigarette, I would be smoking it. It has flooded downstairs before because the outside drain in just not large enough to take a steady downpour for any length of time. And I know that I should call someone to help me with it but downstairs is such a mess and I feel ashamed to let anyone into the house. Self-defeating behavior I’m afraid. But for now, since it’s after 10 at night, I will shop vacuum the water up and pour it down the shower drain. This is going to take a couple of hours. I knew as my tension about it rose that it would lead me to thinking about smoking. And it did, so I stopped what I was doing and came back upstairs and decided to do some writing here to talk myself through this. I haven’t yet got to the point where I’m going to scrounge round the house to look for a spare cigarette that I forgot but I’m getting close to that. Right now, if I found a pack, I would start smoking again. And I’m almost into my 7th day of not smoking. Breathe Kate! Drink cold water Kate...suck on a tootsie pop, chew some sugarless gum but don’t smoke!

I’m reacting to stress but a cigarette will not reduce stress for more than a few seconds. I need to find better ways to handle stress.

I went looking and I found a cigarette. Twenty minutes I sat with whether or not I would smoke it. I sat in my smoking chair and held the cigarette, smelled the cigarette (not much smell, a very old cigarette), looked at the cigarette and said outloud a bit sarcastically, “Just one puff, right?” And that’s when I said no and headed to the kitchen sink with it. I put it under running water and pulled it apart and threw it away and went back to my water. Today I ate too much but right now I can’t go on a diet. I have to get through the next week. I can’t have it all, all at once. First, no cigarettes. I have been exercising the past three days and I want to keep that up. It relieves stress and cuts down the calories. But, wait a minute, I DID IT! I resisted a cigarette in my own home when I was under stress. This is a good thing.

What went through my head as I came to the decision to not smoke that cigarette by destroying it? I thought of my pristine quit and how I would feel honor bound to admit that I had slipped to others online and offline and how that would depress me and make me feel ashamed. I thought, it’s only been six days! I thought, I wanted to wait to smoke a cigarette when it would taste really bad and I wouldn’t want to smoke another puff and I was pretty sure that wasn’t now. I thought how I wouldn’t be satisfied with one and that would make me feel more stressed and maybe even spur me into getting a pack of cigarettes. I thought maybe I could save the cigarette for later. I thought that I would regret it if I destroyed it. But I don’t regret it...except that I’m eating again but better that for now than smoking.

I’ve got three index cards taped to my standing lamp. The first card says: I CAN QUIT SMOKING. The second card says: EASY DOES IT. And the final card says: FREEDOM.

Next day...

14th day on Chantix and 7th day without cigarettes.

Well I’ve made it almost through a week. Some of the online support groups refer to it as “Hell Week” but it really hasn’t been hellish, just a little tense at times. As the week progressed I began eating more so I decided to try to exercise once a day. The first two days I exercised on my stationary bike for 30 minutes and these last two days I’ve exercised for 45 minutes. I can’t get around it anymore. The liklihood of gaining weight when a person quits smoking cigarettes is high because you burn off about 200 calories (I think) each day smoking. So if I keep exercising for 30-45 minutes a day I should not gain any weight. That is if I don’t eat too much. The goal is still to lose weight but for the first couple of weeks of not smoking I know it’s not going to happen. So I will drink a lot of water and exercise daily and try not to overeat. If I can set up a good pattern, no smoking, exercise, eating healthy maybe I can really get healthy again. That’s one of the exciting things of trying to seriously quit smoking.

Went out to see a movie called KNOCKED UP with my brother today. It was really good, very funny but I felt a little sad at the end because I know I will never have the experience of being pregnant or giving birth. I made the decision when I was with Brendan not to have a child then because our relationship was so abusive and then I was too sick with schizophrenia and now, well, I’m not only too old but I have trouble taking care of myself let alone a child. It just is not meant to be in my case. I have to accept my own limitations and push on. I have to keep cultivating gratitude for what’s good and right in my life like a home of my own, a loving family, freedom from delusion and paranoia, my own artistic talents, the fact that I survived at all. When I think of all the suffering in the world, the wars, starvation, disease I know I have little to complain about. I’ve lived through some very hard times but so have many of us. I am not unique. It’s a shame that I didn’t lead a more “normal” life: husband, kids, job but that doesn’t make my life valueless either. I’ve learned to look for the positive in all situations and that hasn’t always been easy. Sometimes I just wanted to die but now I really want to live and hopefully will continue to do so for a while yet to come.

Smokeless

Almost 24 hours without a smoke. I guess the Chantix is working because I haven’t felt any major cravings but I do feel a bit strange.

(Next day) 42 hours without a smoke.

I’ve been preparing to quit smoking since I started taking the Chantix 8 days ago, spending a lot of time online going from one support group to another. Doing this helped me to get the courage to stop smoking cigarettes yesterday. Sunday evening I brought the remaining 7 packs of cigarettes over to my brother’s house for him to keep for the next couple of weeks in case I can’t pull this off. Someone online chided me a bit about doing this and he may be right but for now that’s how it stands. Close to 2 AM early on Labor Day I smoked my last cigarette, destroyed what was left of the pack by drenching it in water and pulling it apart and threw away my ashtray and my mug. Earlier in the night I had changed my position in the living room from my usual seat which I’ve sat in regularly for months and months smoking to a seat on the couch. I moved a standing light to that position and a small computer table for my laptop. On top of a storage bin acting as a table nearby I placed my pills, a quit smoking journal and two pens, audiobooks and my walkman, yarn and a crochet hook and suckers and sugarless gum. I don’t usually buy bottled water but for this occasion I decided to and put it in the refrigerator for the next day. People online said that I’d need to drink a lot of water for the first 3 days to flush the nicotine out of my system. Then I went to bed and slept.

The next day I woke up, made myself a cup of coffee ( I rarely drink coffee at home) and sat down on the couch and took all my various pills including the Chantix, now at a doubled dose. Then I ate a bowl of cereal (Chantix and my vitamins need to be taken with food or they won’t get absorbed into my body properly). Just sitting in the new spot and avoiding the old spot and just knowing that there weren’t any cigarettes in the house or car, made a big difference and I didn’t feel much of a craving to smoke. Nonetheless I did feel tense and I quickly got my bottled water from the fridge. Drinking water throughout the day whenever I felt tired or thirsty (and I found that I felt thirsty alot) greatlly eased the tension and kept it in check. Soon I was online and checking my emails. I got two emails from a couple of friends encouraging me on which made me smile and gave me some strength to continue. I alternated between doing extra sleeping and going online. Later in the evening I watched some television. It was a quiet day and I didn’t go out. The reason I didn’t go out or drink any sweet hot tea was because I knew they could trigger a craving to smoke. But all in all I didn’t have any strong cravings. I did feel sort of trapped in a zone, a no smoking zone that left me a bit tense. Today was similar only I felt less tense because I’d gotten familiar with the day’s position and rhythm and I knew I could get through the day without smoking as long as I stayed put. So I stayed put.

Tomorrow will be a test because I have to go out early in the morning and bring my brother to a nearby town where he takes a class for an hour. I will have to wait in the car and that’s where I usually smoke when I’m out of the house. So tomorrow I will bring with me my supplies: water, suckers, gum, audiobook, yarn, crochet hook and a book. I will keep myself occupied. I will not smoke. But I will be drinking and sucking and chewing a lot. There’s no doubt in my mind now that I am an orally fixated person which means that I have to watch what I eat and get some daily exercise. Still the priority is to not smoke, which means to reduce any kind of stress while I get through this first week. Eating does relax me but I don’t find that I’m eating that much more than I usually do, not yet anyway. I am, though, going through my sucking candy and gum and will continue to do so for now. And lots of water. I went into a chat room at one point and after someone asked if I had been drinking a lot of water, he/she asked if I was taking Vitamin C for my cravings. Well, I didn’t know that Vitamin C was a good antidote to cravings but I happen to take it several times a day anyway.

I am alone and I feel quiet. I know this is the right decision. After 3 months my body will really start to heal itself. Already the carbon monoxide is out of my system and the nicotine is on its way out. This is another new beginning. I do still feel the newness of this and it is a bit weird but I can get through the weirdness and into some better way of being. A cleaner, healthier, more focused way. I’m hoping this is one step in a series of steps towards a better recovery from schizophrenia.