Day 4 On Chantix

I started taking the Chantix (the smoking cessation aid) on Monday. As I said before you’re allowed to smoke for one week before quitting. I have four more days to smoke. My quit date is Monday September 3rd. Today I increase the dosage of the drug so that I get twice as much of it in my system. On Monday I double it again. So far, I don’t notice any major change. Chantix has an online individual support program that you are supposed to check into at least once a day. The first assignment was to keep a 24 hour smoking log. For each cigarette you put down the time, place, who you’re with and how you’re feeling. I’ve been keeping track since the first day and I’m finding 1) that I smoke most when I’m alone in my living room and 2) that I am often anxious just before and even during the time I smoke. It doesn’t really relax me, it just feeds me another dose of nicotine. I’m chained to an addictive pattern and I don’t like it.

I’ve found three places for online support that have been helping me to prepare to quit. The first place I went to was a message board (quit-smoking-support.woofmang.com/). I introduced myself and got a bunch of encouraging responses. There are people out there who have been smoke free for years but they still offer support to others online. I find that inspiring. I went to their links page and found another interesting site: www.quitsmokingjournals.com. Here each person has their own individual journal. I started mine the other day and have already gotten many responses once again. I’m also trying to do a lot of reading at these sites and posting my own encouraging words. There’s a sense of balance in this, a sense of give and take support which I find comforting. The last place I went to I found out from someone on the first message board. It’s a program sponsored by the American Lung Association and it’s called Freedom From Smoking Online (www.ffsonline.org/). Here they take you through many lessons and strongly encourage you to use their message boards. Ideally you start the program three weeks before your quit date so that you have enough time to prepare to quit. I’m doing it in one week because I only found out about it after I started taking the Chantix.

And I wondered, did I rush into this too quickly? I’ve felt nervous about quitting these past couple of weeks but I find that I really do want to give this a try. I’m almost excited about quitting on Monday. If I don’t succeed, I’ll just pick myself up and try again. But at least I’ve begun the process of committing to the idea of stopping smoking for good. It’s taken me a while to get here but now I’m starting to feel ready.

I smoked my first cigarette when I was twelve. I had a crush on a boy in my class and he smoked and so with a friend I tried it. I don’t remember the first time but I do remember how nervous and almost ashamed I was to go into a store to buy a pack. I mainly smoked with my friend in my room. My mother rarely came up to my room on the third floor. Instead she would yell “KATY!!!” to get my attention for dinner or a phone call. And my door was made of thick wood so as long as I kept my door shut the smell of cigarette smoke wouldn’t float down the stairwell. Occasionally my mother would ask “Have you been smoking?” but I would always deny it and she never pursued it. So, I got away with it. I can’t remember how often I smoked but I do remember trying not to and going through withdrawal and fishing through garbage to find a butt to smoke which was thoroughly gross. But I did do it. And I remember the rush I would feel when I smoked a cigarette after not having smoked for a while. Nicotine at work in my bloodstream. Most of my friends didn’t smoke. I mostly smoked alone or with the one friend who I first tried it with. My first boyfriend’s mother was obese and she was an alcoholic and she smoked, so he didn’t like any of that and I stopped smoking. It wasn’t because he asked me to, I just adapted myself to him. I could sympathize with why he didn’t like alcohol (or drugs) and smoking. He began spending more and more time with me and my family during high school and in college and less and less time with his mother. And so for about five years I was mostly smoke free.

As I got closer to my boyfriend, I became more distant from my two best friends (one of whom smoked cigarettes and the other of whom off and on smoked pot). All through college I was basically straight. My boyfriend and I would go out to eat and get a bit drunk on wine sometimes but we were never excessive about it and we didn’t go to parties or socialize. We did our work for school and we spent time together.

Then, just after the end of college in 1985, we decided to split up. I don’t remember it being traumatic. We stayed friends till I left N.Y.C. in 1989. But gradually I started smoking again. By the time I moved away from the City I was probably smoking maybe 10 cigarettes a day. It was a relief to be able to smoke freely (before that I had always hidden my smoking from my family).
I was 27 years old (a voice hearer for maybe two years) and about to begin a traumatic relationship with a cigarette smoking, pot smoking, alcoholic, abusive young man. As I adapted to my first boyfriend by being a straight A/B student, I adapted to this boyfriend by smoking more, drinking more, smoking pot, taking acid. I even snorted some cocaine with him once or twice. I changed. I got really, really lost and as the years past, I became more and more submissive. I smoked a pack of cigarettes a day and became a pot head but I stayed away from alcohol and Brendan kept me (and himself) away from acid and cocaine. My only addiction then as now was cigarettes and I was grateful for that as I watched the horrible effect of alcohol addiction on Brendan.

I tried to quit smoking while I was with Brendan but repeatedly failed and I tried to quit smoking after I left Brendan. That lasted for five months and then I stupidly picked up a cigarette again and fell right back into a pack a day addiction. The last time I tried to quit was in the beginning of my psychosis. The voices ordered me to quit smoking during the most traumatic time in my life and, of course, I couldn’t do it. If anything the torment I went through trying to stop reinforced the addiction afterwards. That was eight years ago. Then the voices said I would have to stop by the time I turned 48. I am 45 and I know it’s time to stop. I don’t want to scare myself into it which is the tactic for some of the online support sites. I know smoking is very bad for my health (for anyone’s health) and just as I want to recover from schizophrenia, so do I want to recover from the effects of smoking for all these years.

I just got back from seeing my therapist. I told her that I am going to quit smoking on Monday and then went into what I’ve been doing online to reinforce that decision. She seemed impressed with my resolve to do this. I’m still nervous about it but I’m working my way up to doing it. I’ve made a lot of poor choices in my lifetime and smoking cigarettes is one of them. It’s shocking to me that I first started when I was only 12 years old. That’s 33 years ago. I have to be patient with myself as I try to do this and not get discouraged if I can’t do it on the first try.

The Center Cannot Hold

I just finished reading Elyn Saks memoir The Center Cannot Hold about her struggles with schizophrenia and her determination to succeed in her studies, in her professional life and in her personal life. Though she still suffers from the effects of schizophrenia, she managed to experience all three of those successes. How did she do it? Her scholarly intelligence and sheer stubbornness along with a series of very good psychoanalysts, many good friends and ultimately anti-psychotic medicines all made for a good combination. They not only helped to pull her through the worst of her illness, they allowed her some great achievements like becoming a law professor, an author and a very happily married woman. She writes with clarity and sensitivity and I read the book quickly. I found it very interesting that her experience with psychoanalysis or what she sometimes refers to as “talk therapy” helped to steady her many, many times and this before she committed to taking the anti-psychotic meds faithfully. I found that this is true for me as well. I went to my therapist for three years before I steadfastly began taking the anti-psychotic medicines and during that time I also talked aloud to my voices when I was alone. Both had a deeply therapeutic effect on me and made me feel actively involved in the recovery process. I was literally and figuratively working through my psychosis by talking to someone grounded in reality and to the source of my illness: the voices themselves. It helped to counter a pervasive sense of helplessness. I had a voice and I could use it if only just with my therapist and with myself/the voices.

(Next day)
Towards the end of the book Elyn Saks asks herself “Who was I, at my core? Was I primarily a schizophrenic? Did that illness define me? Or was it an ‘accident’ of being--and only peripheral to me rather than the ‘essence’ of me?”(p.255) Once I accepted the diagnosis of schizophrenia, life got somewhat easier for me and I did think of myself as a schizophrenic almost with pride for having survived the worst of the illness. But still, then as now, I lived in isolation away from other people who were suffering under the illness. No support group. I think this isolation is part of why I still let the illness define me. The essence of me is so intertwined with the ongoing experience of schizophrenia that I have trouble defining myself outside my diagnosis. Some of the so called positive symptoms of my illness, the delusions and paranoia, have nearly gone but I still hear the voices and still believe in their reality. The negative symptoms, social withdrawal and a certain lack of emotion, are with me every day along with the voices. And so, I am not recovered. But compared to the torment of before I know that I am in recovery nonetheless.

We all have our limitations, schizophrenia just puts more emphasis on those limitations. I still hope that someday I will be well enough to find meaningful work, friendships and a healthy love relationship just as Ms. Saks has done. But I must admit that I am afraid of the responsibility that that would entail. Right now, I live one day at a time and continue to feel grateful for all that I have if only just in small ways. The truth is, though, that I need more support. On some level I keep believing that I have to do it all on my own and when I believe that, I lose confidence in my abilities. A big difference between me and Elyn Saks is that she opened herself up to friendships and that is part of why she accomplished so much. She valued people and they valued her. I haven’t been in a close friendship with anyone since my first boyfriend and that relationship ended about twenty years ago. And before that my two best friends from high school gradually pulled away from me (and I them). Since I graduated from Barnard College in 1985 I went from a shame filled isolation (because I didn’t get a job and move out of my parents house) to an abusive relationship with an alcoholic to severe mental illness to now. When I first became psychotic it was my voices who pushed and tormented me to be “of service to my community”. They said I must not isolate myself, that I had to go to the hospital, get a diagnosis, find a therapist, go to any support group even if it didn’t address severe mental illness. They pushed me into helping the women I met in my support groups (Al-Anon and a domestic violence support group). I made phone calls, I visited, I helped with their children, I took notes, I gave gifts, I offered my home as shelter, I helped to get a woman’s children back (children who were being sexually abused), I talked to school principles, I testified in court. I was very psychotic and yet I did all these things, in part because it felt good to help and in part because I felt overwhelmed by the voices punishing insistence that I somehow prove that I was not, indeed, evil. The people I encountered were good people and they helped me but I couldn’t really connect with them. Most of them didn’t know I suffered from schizophrenia. To tell them would be to lose credibility and at that point any credibility I could find I thought was precious. The psychosis was too intense and grueling and I felt powerless to make a bridge to other people on a deeper heart/mind level.

I still feel this inability to connect deeply with others. The online community has been a Godsend to me because at least I can break out of my shell to a certain extent with all the good people out there but offline I mainly keep to myself. Several of the women I knew and supported have repeatedly tried to make contact with me but I won’t answer the phone. I’m afraid to talk about myself person to person. I don’t have a husband and family, I don’t have a job and I don’t have friends. That is no one’s fault or responsibility but my own and I know it. I keep saying to myself “Later when I’ve lost the weight, when I’ve cleaned the house, when I’ve learned how to play the guitar, when I’ve gotten a job, then I’ll make friends and end this isolation.” But so far later hasn’t come and valuable time is passing by. But even if I wanted to, I can’t rush myself. I have to go one step at a time. I returned to therapy and I got a volunteer job within the last six months. I still want to start a support group for people with mental illness and next Spring, with the help of VESID (Vocational and Educational Services for Individuals with Disabilities) I may even get a part time job. At least now I am seriously considering these things whereas before I just wouldn’t have had the motivation to do that. The changes may not come as fast as I want them to but I believe they will come as long as I never give up. I don’t think I will. I do value my life and the lives of others and I do want to continue to try.

A Few Thoughts On My Return

Woke up at 7 am and took a shower, then dressed, had my last cigarette, stuck a nicotene patch on my inner arm and left with my parents to go to the airport. We arrived there before the ticket counter had opened and had to wait. My mother went to get a New York Times. When she got back they sat reading it while I waited on line. After I got my boarding passes my parents walked me to the security check point. We said our goodbyes and I left to go through security. I took my computer out of its bag and put it in a tray. One security guard pointed at my shoes and said “You have to take your shoes off.” I had forgotten worrying over the computer. I slipped off my new shoes (a gift from my parents) and put them in another tray. The security guard was busy talking to another security guard but waved me on through the metal detector. No problems. Got my stuff and waved a final goodbye to my parents. Then I was on my own. I got my breakfast: a bagel with cream cheese and a small latte. Comfort food. Sat down in relative solitude and ate and drank. Then I got on the plane and sat down.

Even though Jet Blue has built in satellite tvs in the back of every seat, I read. The book I’m reading was highly recommended by Christina Bruni. It’s called The Center Cannot Hold by Elyn R. Saks. It just came out this month and it’s a memoir of her struggles with schizophrenia. What’s immediately striking about the memoir is the information on the author on the inside back cover: “Elyn R. Saks is a professor at the University of Southern California Gould School of Law and an adjunct professor of psychiatry at the University of California, San Diego, School of Medicine. She is a research clinical associate at the New Center for Psychoanalysis.” By anyone’s standards this woman is highly successful in spite of having an incredible disability. So far I’ve read 220 pages and plan to finish it tomorrow.

After I got my seat on the second flight and was about to continue reading one of the flight attendants strongly tapped my arm as a youngish woman sat down besides me. “She gets very upset at take off.” It was both a warning and a plea for support. The woman herself then went on to say that she would probably want a hand to hold and she would probably do some crying but only till just after take-off, then she’d be fine. Ironically, I, too, do not like flying but I’ve never had the kind of panic attack this woman was having. I resolved to be supportive but I had little desire to talk her through it. I did say a few words of comfort and I held her hand tightly before and during take-off. I felt sympathetic, even a bit empathetic but not talkative. She said she had flown a lot but always had this reaction. She would worry about the plane exploding the day before, the night before and the morning before to the point where she just couldn’t relax. The man beside her looked as if he was trying to fall asleep and she said “He’s lucky.” After we took off and climbed to a high enough altitude she kissed my hand and thanked me. She was still a bit agitated and she got up to go to the bathroom. When she got back she soon got preoccupied with television and with eating a double portion of snacks that had been handed out. It was a short flight, under an hour and luckily the woman had no problem with the landing. (Of course I didn’t tell her that the landing is as dangerous as the take-off.) Trying to calm her made me strangely less personally afraid.

Reading a book about a woman’s struggle with schizophrenia and comparing my experience to hers I felt mildly self-conscious about my illness. Just that I had talked to no one but the agitated woman was typical of a person still suffering from the illness. And by the time I got to my car I was feeling anxious about the ride home but the voices comforted me and told me I would have no problems and that when I got home the cats would be fine. And they were right. But here I am sitting in my spot back to smoking two cigarettes an hour instead of the one an hour (sort of) I was smoking down in Florida. (I took off the patch again soon after we landed) And I’m thinking do I want to fall right back into my usual pattern or should I try to change? It’s hot and humid and I’m tired and so I do fall back but now it’s time to start thinking about taking the CHANTIX. I noticed that the nicotene patch really did calm me down and I’m sure this new drug will do the same. It was a curious feeling not to be caught by craving. All of a sudden I didn’t feel the need to plan for my next smoke as I had while I was visiting my parents. After I got home I soon smoked a cigarette. Then I lay on the couch and thought “What if I wait an hour before smoking another one the way I did in Florida?” For a few moments I considered what it would be like to not smoke at all. There would be more time, more freedom and I realized that I would need more support than I’m accustomed to asking for to keep myself focused and busy. I thought...I should find out if there’s a face to face support group that I can go to in this area. But really all this thinking is just putting off the inevitable. If I was really committed I would start taking the CHANTIX tomorrow. The first week on it you are allowed to smoke. The following week you must stop.

I want to change. The voices counsel me to stay positive and not berate myself for starting to slip back into my habitual pattern. They are right. A negative attitude is like a whirlpool, it sucks you in and down. A positive attitude allows for setbacks and fosters a sense of hope. I have to believe I do have the courage to change or I will not change.

(Next day) Slept for 12 hours straight. I feel rested but it’s still too hot and humid. Down in Florida everything except the out doors is air conditioned but here in my house I just have fans. They do help but I still feel slow. My main worry while I was away was about the cats but they are all okay. My voices did repeatedly reassure me that they would be but I still worried. I can’t pick up a phone and call them and say “How are you doing?” Richard looked after Allie at my brother’s house and stopped over at my house also but he didn’t see Ozzie or Moocher. That didn’t surprise me. They are frightened of strangers because I rarely have people over to my house. Sometimes when a car pulls up in the driveway one of them will growl and both of them will look for a good hiding spot. My brother is the only one they will eventually come out for.

Still smoking too much. I think I will start taking the CHANTIX pills on Monday. It will give me a week to get rid of cigarettes in the house and car. CHANTIX has a website and a special support program for those who are using their product. They say to start it on the first day of taking the medicine. I’ve done a little research online to find support groups for people who are quitting cigarettes. There are several with message boards. I should call the local hospitals and see if there are any face-to-face support groups there. I need extra support because I’m starting to realize that I’m scared to quit. Yes smoking cigarettes is an addiction but it’s also a psychological crutch. I was smoking half as much at my parents because I had to go outside their apartment building but I had the feeling that I could smoke even less if I put my mind to it. At my parents there was the rule--no smoking in the apartment or in the car. Here at home there are no rules and I get lax. If I feel restless, I smoke a cigarette. If I want to procrastinate, I smoke a cigarette. After I eat, I smoke a cigarette. I need to understand my habitual patterns if I’m going to succeed in fighting off this addiction.

Okay, time to finish reading Elyn Saks book.

One Day At A Time

Arrived in Fort Myers 6:20 pm. Both our flights were delayed but we arrived on time in Florida. Our parents were dutifully waiting for us as we were heading towards the baggage claim. Normally I would be racing outside to have a smoke after eight hours without one in the smoke free airports, but this time I cleverly stuck on my arm a nicotene patch and so I wasn’t desperate to smoke. That was a pleasant change and hopefully it will be a permanent change in about two weeks when I start taking the Chantix pills. I’m gradually working my way towards quitting my sole addiction. Of course, as soon as we left the airport I took off the patch. And an hour later I was back to smoking again but at a much slower rate because I’m not allowed to smoke in my parents’ apartment (I wouldn’t do that anyway), so I have to smoke outside. It’s so good to be around my parents and to enter into their clean, well-organized, attractive apartment. Right now everyone is asleep. I will be sleeping for the next eight nights on the living room couch which I prefer to sharing my mother’s room which is too small for the both of us. Plus I like her to have her own space and the living room at night gives me some private time as well. I find I need the private time, not because my family is unpleasant to be around, far from it but because I am in many ways an introvert. Schizophrenia has just accentuated my natural bent towards solitude. Still to be around my family this way is a treat. Tonight I had the added pleasure of listening to my mother read some of her writing aloud to my brother and me. She read a couple of short book reviews, a piece on an aspect of her childhood and a piece about a trip to Cairo, all very well written and filled with precise detail. Some of her pieces have been published for the residents of their retirement community but those pieces are all necessarily short, but it’s her longer pieces that I responded to and the shame is they don’t have an audience. So I said to her she should start a blog. It would be perfect for her and if she gave her address out to people she would get the audience she deserves. I will show her my blog, not for her to read (I feel a bit shy about my family reading my blog) but to try to entice her to start one of her own.
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Slept well last night. Woke up to the sound of my brother and mother talking around the dining room table. Soon after I woke up my mother lifted the shades from the windows and let the light shine in on all of her plants which look healthy and happy. She and my brother have the green thumbs in the family, so did my mother’s mother. Right now they are out looking at the plants outside, despite the heat and humidity. I, on the other hand, went out with my father and did a little shopping.

Friday evening -- It’s getting towards the end of the first day down here. We had an early lunch here at the retirement community. Then we went to see a movie The Bourne Ultimatum starring Matt Damon. It wasn’t a movie I particularly wanted to see but I was outnumbered so I keep quiet. I keep quiet a lot I’ve noticed. My brother gets more argumentative around my parents and I get more submissive. I’ve never been a brilliant talker and for a while there when I was most ill I barely talked at all to other people (though I talked a lot out loud to my voices when I thought I was alone) but I used to be able to hold my own in a conversation. Now I speak a bit here and there but I’ve lost a lot of confidence. I have this nagging lack of self esteem. But again, I have to count my blessings that I’m not really incapacitated. I could be in the torture as too many people still are. I could be catatonic. But no, I am in recovery. I may have misgivings but I am heading in the right direction.

I’m happy to report that my parents are doing well. My father turned 81 two weeks ago and my mother will turn 80 in March. I have to admit to myself that they are officially old now but they’re in good shape and don’t look their age. They are also in good spirits. May it last for a long time. The retirement community they live has, in addition to the regular apartments, an assisted living section and a nursing home and the hospital is very close by. About a year after I got sick they moved from a house on Sanibel Island to this community. That was eight years ago when they were in their early 70’s. They decided it was time to secure their future and they wanted to have access to both healthcare and community. Luckily they have not needed assistance but if they do they know they will be taken care of and that reassures me because I know I am in no condition to take care of anyone but myself at this point. Gradually they are coming to terms with mortality and illness. They’ve known people here who have died or who have become seriously ill but despite that they have made friends and have become useful. I’m sure they don’t like the idea of their own mortality but they are not running scared from it either. If I live to be as old as they are I hope I have their fortitude and courage.

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Saturday -- My brother is a very knowledgeable, very smart individual, so are my parents but sometimes I find him overbearing. I feel uncomfortable when I get annoyed with him because I want so much to get along with him. In some ways, he wants to spar and I’m just not good at it. I’m not as quick, as knowledgeable, as practiced in the art of arguing as he is and he knows this. To be fair he doesn’t really thoroughly attack me, just a few quick jabs at my lack of a memory or my withdrawal from people but he doesn’t seem to really realize that I suffer from schizophrenia. I don’t feel comfortable pointing this out though I know that I should. But what can I say? I am not willful and lazy, I live with a disability. My brother may be in denial but I suffer from mental illness still and I need forebearance and help, not criticism. Or rather if criticism is necessary, may it be constructive, instead of just hurtful. I think my brother has a lot of verbal confidence which he learned at a very young age because he had trouble with reading and writing but in other ways he, too, lacks confidence. He has been encouraged to do a radio show at one or both of the colleges here but he’s never been on the air (though I hope that will change this year). He has been told that he should write but he doesn’t do that either. He should be writing in a blog of his own, as should my mother but I don’t know if they will actually take it up. I really should show them both the ropes of doing it soon. Maybe my encouragement will get them to do it. I would love that, love to read what they write on a regular basis. And I know I could learn from them precisely because they are so knowledgeable and intelligent.

I guess I’m just trying to adjust to all this family togetherness and though I love my family I need to be alone for part of the day. I think it has to do in part with the way I grew up, in a house where I had a room of my own but also it is the schizophrenia. Though I must say I am in much better shape than before. Before the voices were so loud and intrusive that I would be off in my own world and unable to pay attention to my surroundings. Now I can interact to a certain degree.

Off To Florida

Thursday morning my brother and I will go to the airport and begin our journey down to Fort Myers. I’ll be there for eight days and my brother for eleven days. I really like to see my parents but I no longer enjoy traveling. Perhaps this is a temporary thing but for now I need a couple of days of preparation before I’m ready to go. I think I need to change my attitude from fearful to confident. Instead of thinking what might go wrong I should think of what will go right. Or at least have some faith that it will go right. I don’t want to be ruled by fear. It ruled me some of the time with Brendan and it ruled me with the voices before I began to recover. I do want to be cautious and responsible as far as I’m able but I also have to be willing to let go of control and accept wherever I’m at. One of the 12 step slogans is “Let go and let God”. It can be hard to let go when you want to grasp more tightly but it is possible if you cultivate a faith that something greater than you is intimately involved in your life. All I know is that these voices are with me always and if they can be, then so could a Higher Power. It’s an extraordinary idea, beyond the scope of our understanding but that doesn’t mean it isn’t possible. I feel this with the I Ching, this strong feeling that my life and all lives are important and witnessed. What you think does matter and so does what you say and do. You matter. I also now believe in some kind of afterlife, perhaps reincarnation, maybe even heaven/nirvana. I pray that if there is hell, it is only here on earth and not waiting for souls when they die. And I also pray that someday there will be no more hell on earth. Life is fraught with difficulties as is, there is no need to add to them.

(Next day)
Got some things done today. I finally mailed of the presents to J.P. Sorry they are so late! Then I went to the bank and deposited $110 in rolled quarters. I didn’t purposely collect so many quarters, I just happen to hoard things and I had a lot of change. Over the years I kept telling myself to deposit the change but never did it. I was motivated to do it because I’m a little tight on money and there happens to be a sale on for audiobooks. As a treat for trying to quit smoking when I get back home I decided to go ahead and place an order. The catalogue is called Sounds True and I’ve gotten several recordings of Pema Chodron from them. I’m getting a little over $60 worth of stuff. One is an audiobook by Ken Wilbur (I think) on Taoism. I have not been writing about Taoism and I thought it was high time to start some learning about it. After I deposited the quarters I dropped off a whole storage containers worth of videos at the library. I decided to switch over to DVDs and thought the library could really use the movies I’ve collected. Some might go in their permanent collection and the rest can be sold at their annual book sale in September. It was a little difficult letting them go but I have become enamoured with DVDs that I can watch on my computer and I just haven’t been watching the videos. Such a waste and that is true for books I have and clothes that I don’t use. When I get back I’m going to go through my books and clothes and give a bunch of stuff away to the library and to the Salvation Army. Actually it did feel good giving away those videos. I’ve been thinking lately that I just have too many possessions. Sometimes I imagine that if I live to be sixty five that I’ll become a Buddhist nun like Pema Chodron and live a simple communal life. Maybe some day I’ll be strong enough to do that.

About twelve hours till we head to the airport. I’m almost packed. Tomorrow morning I’ll bring Allie over to my brother’s house because Ozzie does not get along with her. A mutual friend will look out for her while I’m away. The other two, Ozzie and Moocher, I think will be fine with just a lot of dry food and water. I don’t like leaving the cats alone but I have to see my parents several times a year and this is the only way I can swing it. The worst is around Christmas time when I have to leave them alone for two weeks. I know cats are pretty independent but they rely on people for routine and comfort. But, again, that’s the way it has to be. I’m always so relieved when I get home and find them okay. So tomorrow as I leave I will let go and let God. My voices often reassure me too and that is a comfort.

As my Nana used to say, “I’m not the kid I used to be.” I’m starting to feel my age. Sometimes I think, if only I knew then what I know now, I would have taken much more advantage of youth than I did. And when I look at young people I think this is their golden time, they should enjoy as much of life as they can, within reason of course. I guess for a while there I thought I would be young indefinitely but alas, that is not the case. And personal trauma leaves its marks but at least I am alive and in relatively good health. I’ve taken some knocks as we all have at some point but my spirit is still resilient enough to start to bounce back. It just takes time and some patience. Part of being able to bounce back is in being able to let go of delusionary thoughts and feelings. Growing older is helping me to face reality and it is softening me. I can look back now on my life and see where I was lost and why. I can point out moments of delusion and I know, at the time, that I firmly believed in my delusion and I would hold on tight to it as if my world depended on it. Now I let it go. I acknowledge my own misperceptions due to the subtle (and not so subtle) attack of the illness. It’s a relief. But it took years to acknowledge the falsity of my delusions and this helped to create deep depresssion. No longer special and no longer young and very sick still. I just got through it, I survived it and that gave me a bit of courage. And so it’s okay now that I’m not the kid I used to be or thought I was. While I was actively psychotic I bought a framed picture. It has just three words on it plainly spelt: Faith, Hope, Love. Faith and love I cultivated and hope returned to me. I think they are all very important parts of recovery.

Okay, that’s it for now. I’m going to be bringing my laptop with me so hopefully I do some blogging during the trip.

The Good In Passing Moments

Still feeling somewhat scattered and detached and yet I’m not suffering. I act as if I am depressed (not cleaning the house, not going out to see people, sleeping in my clothes again) but I don’t feel depressed. I’ve lived through psychological torment and physical abuse and suicidal depression and so I know that I am essentially okay now in a way that I just wasn’t before. I have memory loss and I’m emotionally numb, no doubt due to the trauma I experienced before, but I also feel safe again. The voices are my shadowy companions but I don’t feel as if I’m under the intense and painful scrutiny of my early psychosis. I never feel as if I’m alone. I did, however, feel the sense of being alone with a malevolent force, as if all the world had gone dark and no one was alive and it was just me and my hostile alien counterpart. Sometimes I wonder what it would be like not to have the voices, to be free of them, to feel a sense of aloneness. As far as I’m able I miss that. I used to call it my sacred space. Those times I used to have during the day when I would be reflective with myself and perhaps God. I am still reflective but I know they are there and I know they are tough judges. They lend a different color to my thoughts. I’ve gotten used to this. I’ve come to accept it and not fight against it but that is only because they have stopped their out and out attack upon my psyche. This may be due to the anti-psychotic drugs or to having lived and learned some lessons, probably a little of both. Or maybe they have changed in the process of knowing me. I can listen to some of their thoughts but I can’t really know them. The only person that I can really know is myself but still I hope that I’ve had a good influence on them. For whatever reasons they no longer attack me, some still say unkind things to me but it is as if a child were saying it with a touch of spite. It is forgivable. I listen and do not judge or react. I let it go. The Serenity Prayer fits here: “God grant me the serenity to accept the things I cannot change, courage to change the things I can, and the wisdom to know the difference.”

It took me a while to get to this point. I was attacked, I fought back through my manic delusions and my paranoia. I defended myself and I tried to help them turn around toward the Higher Power. Then I was attacked and I submitted--depression. At some point as things got gradually better I must have come to accept my circumstances. I had already proved over and over again that my heart was in the right place towards myself and them and everyone else. I no longer had to keep trying so hard. But I did begin a practice of gratitude and prayer which I still follow. I had to make myself think: what’s right with this moment, instead of what was wrong with it. There really are a lot of good things in life that have little to do with wealth or position or power. Right now for me there is the sound of the crickets humming and a gentle breeze, there is peace in my house. I’m drinking warm sweet tea and sitting here with no distractions writing to you. My breath is easy, my limbs functioning, I’m in no pain. I may have voices but I still hold onto a sense of my basic sanity. For now, I am content. Even in my worst moments there were positive things around me, if only just a roof over my head and some food to eat. I never felt completely abandoned. I came close a few times, just barely holding on, but then the severity let up and I got through it.

The philosophy behind the I Ching is that life goes in cycles from birth to decay to birth again. If things are really bad, wait, they will get better and if things are really good be prepared for a change of fortune. That is life: up and down and round and round. Everything is involved in some form of change from youth to old age or from water to ice. If you look for change, you will find it even during times that seem static. The earth is always spinning and rotating and so are we with it. I think we’re all vaguely aware that change is happening every second even when we do the same things repeatedly each day and night. But that’s just it, day and night (at least for most of us), we can count on that change. Days pass, years pass and the up and down of time passing continues. We all move closer to the end of life as we know it. All the more reason to look for the positive in each moment. I think of a zen cartoon from a book of zen cartoons I own: a man is walking through the wilderness when he comes upon a fierce tiger. He runs to a cliff and starts climbing down a vine but discovers another fierce tiger at the bottom. Just then two rats start gnawing at the vine; it is just about to rip when the man notices a strawberry. He eats it and it is delicious. The end caption says, “Don’t dwell on the past. Don’t worry about the future. Experience and cherish the moment. Happiness is acting according to circumstances, whatever they may be.” (from Zen Speaks: Shouts of Nothingness by Tsai Chih Chung and translated by Brian Bruya) When I was delusional I did dwell on the past and then anticipate or worry about the future. I argued and I obsessed and I felt miserable but there still was a lot of good all around me. Sometimes I was aware of it even though I was in a lot of pain. A cat’s purr, a cup of tea, the sunshine, a person smiling at me, a good song, comforting written words. When I was most desperate it was the comfort of getting some sleep (without the voices attacking me even in my dreams).

I still worry about things but I’m beginning to remember that I can choose to focus on the good things in any situation. The voices used to say things like “Remember to forget.” and “Forget to remember.” But I want to remember my life the good with the bad. I want to remember so that I don’t continue to hurt myself with worry or aimlessness.
I don’t want to remember to get lost in it and avoid the present, I want to remember to appreciate the present and to share what I’ve learned. I think my memories are within reach, I just have to dig a little deeper and have more patience with my own process.

White Light, Black Rain

Last night I watched an HBO documentary called White Light, Black Rain. It was about the atomic bomb and Hiroshima and Nagasaki. Yesterday was the anniversary of the destruction of Hiroshima. Thursday will be the anniversary of the destruction of Nagasaki sixty two years ago. Most of the documentary was told by the survivors, many of whom were just children at the time. They describe hell on earth. Mothers, fathers, brothers and sisters burned to a crisp. People alive but with no eyes or eyes hanging out of their sockets. Many of the survivors had been burned and disfigured. After the bomb exploded they lived in physical agony due to the burns. One man said the worst thing was the maggots eating through his raw flesh. There were bodies everywhere and little help. Because the city was burning people jumped into the water which soon became filled with bodies. Many of the dead were children. Now most of the population of Hiroshima and Nagasaki was born after 1945 and the young people interviewed on the street had no idea of the importance of the date August 6th 1945. Neither did I till last night.

At least 100,000 people died some instantly, others over the next few days. The rest had and have lifelong illnesses along with physical disfigurement. Tumors, brittle bones, cancer. Women had problems with their reproductive systems, many couldn’t give birth and those that did many had deformed babies. Since 1945 the atomic bomb has not been used in war but we now have on earth enough bombs to create over 400,000 Hiroshimas and Nagasakis. The United States and Russia have the most bombs. The United Kingdom, France, China, India, Israel and Pakistan all have nuclear weapons. Several years ago India and Pakistan were on the verge of war and many worried that they would nuke each other. There are fears that North Korea has nuclear weapons and that Iran will soon also.

After the U.S. dropped the bomb on Nagasaki on August 9th 1945 the Japanese surrendered and World War II was over. About three months earlier Hitler had committed suicide and Germany then surrendered to the Allies ending the war in Europe. How necessary was it to use the atomic bomb? A bomb they had only tested less than a month before in New Mexico? The Allies had been winning against Japan but the Japanese had refused to surrender. The Allies planned to attack Japan itself in November of 1945 but the U.S. believed that a million Americans would die if they did and President Truman decided to drop the bomb on mostly innocent civilians instead. But once was not enough for him. He wanted Japan’s immediate surrender and when he didn’t get it he didn’t even wait a week before dropping the second bomb. Were American soldiers lives so much more precious than the innocent lives that were taken or ruined by the bombs? During World War II men freely enlisted. They made a decision to participate in war but what of all the Japanese women and children and elderly who did not. It’s horrible beyond belief that any country would resort to using the atomic bomb, especially against civilians.

Some people believe that having “weapons of mass destruction” helps to keep the status quo but to my mind it just escalates the potential threat. There has been some moves towards partial disarmament especially in the U.S. and Russia but not enough. Part of it is due to a kind of world amnesia about Hiroshima and Nagasaki. But how can we protect ourselves from annihilating the world if we don’t take a good hard look at what we have already done? Why do many of us make excuses for killing and destruction? The atomic bomb is more that a means of human destruction, it is a desecration of nature. It is obscene. It should never ever be used again by anyone. Right now we can only pray that it won’t be. I believe in total disarmament. I don’t believe in the validity of war at all. But that is not the world we live in. Somehow we still insist on painting war as some noble pursuit when in fact it is barbaric. For anyone, it is barbaric. More violence is not the solution to violence. It never has been and it never will be. If we tolerate it we proliferate it, we protect it and we say he are helpless against threat without it. And we stop looking for better solutions. We stop believing that a different world can exist.

Change for the better has to start somewhere, why not now? In many ways it is unfortunate but we are the stewards of the earth. If we won’t protect her, who will? We have to move from a world culture that accepts and promotes violence to a world culture that values and protects all life. Forgetting about Hiroshima and Nagasaki is not the way to do that. It’s important to remember.

Maitri Practice

I have a bunch of cds by the American Buddhist nun Pema Chodron and I’ve been listening to one group called True Happiness. In the last cd she discusses something called Maitri practice. Maitri means loving kindness towards oneself or friendship with oneself and all living beings. But you start with yourself and gradually spread the loving kindness out to everything. Ms. Chodron encourages “this complete friendship with yourself that includes all parts.” She also says that it’s very common to feel a “barrier” against this. Getting in touch with this barrier is an important first step. “Just by seeing it, there’s the potential of it beginning to dissolve.” By seeing and feeling the barrier you step out of ignorance and into awareness. You make a change, disrupt the habitual patterns in yourself. The practice is to say “May I enjoy happiness and the root of happiness.” From there you say it for those you care for, then those you are neutral about and finally those who you feel conflict about. I find it’s easier to say it for others than for myself. And I do this before I go to sleep and I do this when a car passes by my house. It’s not the same as doing the formal practice, which I would like to start doing, but too often I leave myself out and I shouldn’t. The daily problems I experience are not due to other people but to myself and my circumstances. I really need to be better friends with myself. Yes, I care about myself but I’m also critical, ashamed. I feel the barrier every day.

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Insanity comes in varying degrees. Generally it’s not as simple as: you are insane or you are sane. People are a mixture of balance and imbalance. Some have more balance than others, but I would say it’s the rare person who hasn’t had any crazy thoughts. That’s part of what puts drama in the human species. Crazy ideas create crazy stories and crazy ideas also can contain sparks of inspiration and even genius. I think of Vincent Van Gogh or John Nash. One chose paint and the other chose numbers but despite the drawbacks of their own mental illness they surpassed most of us in creativity and intelligence. I’m not saying that mental illness is good but that good can be found within it because good can be found within the mind.

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Yesterday was my brother’s 49th birthday. We went to Rochester and ate out at an Indian restaurant which was a treat for both of us. Then we went to see the Simpsons movie which was a lot of fun and we did some shopping at a nearby Barnes and Nobles. I got three gifts for J.P. whose birthday is tomorrow and I got two very inexpensive audio books for myself: Michael J. Fox’s memoir Lucky Man and Thomas Moore’s Dark Nights Of The Soul (A Guide To Finding Your Way Through Life’s Ordeals). Micheal J. Fox is an actor who was diagnosed with Parkinson’s disease in the early 1990s. He’s been struggling with the disease ever since, searching for a cure. I admire him and his attitude towards his illness and I know it will be good to listen to his story. Thomas Moore I don’t know very well. I picked up a book of his a while back but never read it. From the liner notes of the audio book I discovered he had been a Catholic monk for 12 years but later became a psychotherapist. I’m curious to listen to what he has to say. Maybe he’ll give me some new ideas to work with. As I’ve written before, I listen to the audio books while I crochet or exercise. I like to learn while I work. With some authors it’s a real pleasure to hear them read their own work.

The night before we went on our trip to Rochester the voices told me to check the oil level in my car which I dutifully did the next day and, yes, I was almost out of oil. I was very grateful to them for telling me because the car could have easily overheated on our drive to or back from the city. From now on I’m going to check the oil at least once a month.

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I won an award (along with Christina and Pam and several others unknown to me) for a top site related to schizophrenia. Very cool but I can’t put the award icon on my site. I’m practically computer illiterate. I don’t even know how to cut and paste. My own fault. I’m surprised to be selected but very pleased. And I send my congratulations out to Christina and Pam who thoroughly deserve it. It’s been a pleasure getting to know them this past year. Maybe this will draw more people to our sites.

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Obviously I’ve been writing sporadically this past week and I haven’t been posting it. What’s up? I’m not sure yet. There are the practical things I’ve done like celebrating my brother’s birthday, getting my acoustic guitar fixed, playing some piano, working on the afghan for my uncle and today I finished listening to an audiobook by a man (a minister) who was in a serious car accident. He was left for dead for 90 minutes and during that time he says he went to heaven. He became partially crippled after that and I think still lives with daily pain but he lived to tell the tale. It took awhile but eventually the experience strengthened his faith. He learned to share his story over and over again and people listened and were comforted. What didn’t comfort me was the fact that this man believes that there will be heaven for those who believe in Jesus Christ’s divinity but hell for those who don’t. He didn’t dwell on this, only mentioned indirectly several times but it struck me as soon as he said it. In my mind, if hell exists it is not created by the Higher Power. In my mind, God loves all beings. The more evil, the more sick, the more deserving of compassion. I think we are all chosen, not just one religious group or another.

While I was acutely psychotic I thought I was telepathically connected to a powerful serial killer, before that I lived with an abusive alcoholic and despite my deep fear I still prayed for them to be healed. I still believe it’s possible to heal the hardest of hearts and the cruelest of minds. Even Jesus said it’s no great thing to love those that love you (though it’s undeniably good), the great thing is to love those that hate you. In Buddhism this is maitri or metta practice. You cultivate the seeds of forgiveness and compassion. You try to put yourself in the other person’s shoes. I tried to walk in the shoes of an imagined serial killer. I found suffering there. I witnessed the suffering of an abusive alcoholic and I endured the acting out. Yes, people can act like monsters but they are not evil in essence. In essence (the inherent Buddha nature) we are all equal and all good. The bad that accumulates come from habitual patterns usually established early and from negative influences. We start out innocent. All of us. When things start to go wrong, especially with children, there is some real reason for it. Abuse, poverty, emotional neglect, hostile environments, physical illness, something to account for negative behavior.

In my brother’s case it was a less dramatic reason. For himself as a little boy, he had the wrong father. Not a sexually or physically abusive father but an emotionally absent father, a father with no interest in sports. A father who had himself had a mental breakdown that landed him in a mental hospital for two months and in therapy for two years. My theory is that my brother was both smart and perceptive as a baby and he intuitively knew that something was wrong with his father even at such a young age. Obviously my mother knew something was wrong with her husband and she may have transmitted this to her son as well. We were all very fortunate in that my father’s mental illness did not become debilitating. He went on to have a successful career as a corporate lawyer but some scars were left even so. My brother, who learned to read and write in late childhood, did erratically in school, especially high school. Instead of finishing high school he got his GED. He went to three colleges but eventually dropped out of those as well. Once he moved away from home, he began to improve. He needed distance from his parents to finally realize that he was a worthwhile individual. He needed to grow up and get past his initial anger at his father and his grandmother (my father’s mother who was controlling).

I believe in the goodness in my family but that doesn’t mean we were exempt from having problems. Mental illness has shadowed us on one level or another. Shadowed me most of all. I have gotten quite a bit of distance between myself and my illness at its worst. And I am grateful to my family who have been supportive and accepting and to therapy, support groups, medicine and my own will to get better. And I’m grateful to some of the voices for seeing me through the worst and treating me now with kindness. Sorry if this entry was a bit all over the place. I’ve just been feeling a bit scattered lately.