Becoming a schizophrenic has introduced me to many lovely people I would never have otherwise met. I met them in hospitals and online. I realize, from meeting them, that I am very lucky to have had some time before I was set upon with the schizophrenia. I was able to finish school, work, travel, get married, buy an apartment in London, live in Los Angeles... It was really good. But it all ended with my mental illness. I ended up back home, penniless and so on... I'm now on disability, which is a Godsend. I have had a lot of time to sift through my mind what was and is happening. I have perspective now on my years before schizophrenia. I had some growing up to do, but nothing that would call for the disaster that schizophrenia has been. I have put down my Pema Chodron at her chapter on loneliness. I just think there is loneliness and there is being marginalized and isolated. No one ever rings a gong for me to come back to the discussion, like it does for her. She has children and grandchildren. I am really alone, even though I live with my brother. He has schizophrenia too and we don't talk much. He refuses his meds and I am subdued by mine. I have decided though, that instead of refusing to reach out in my loneliness, as Buddhist practice dictates, I will try and reach out. It is a major uphill hike. I haven't belonged anywhere in 17 years. In a way, I am familiar with loneliness, which counts I think, but it's important to get involved somehow. I am not together enough to write a book or to speak in public about schizophrenia, I just want someone to invite for tea. I have, as of 2013, had an old friend take an interest and invite me for coffee two or three times a year. He lives out of town and comes by when visiting his mother, who lives in my neighborhood. It is nice, something I really enjoy when it happens. I am nervous about it, my conversational skills are very rusty and I feel like I'm apologizing for the speed at which I used to take life. I'm slower now, quite slow, but it's nice to get out. I want more of that with more people. I'm not in a natural friend-meeting way of life. Unless I make a real effort, I speak to no one all day long, weeks at a time. (I'm not counting phone calls with my good old mom.) I have scoured the paper and the internet for activities, meeting groups, things like that, to try and meet people. But there is nothing. There is a book club, but I feel a bit overwhelmed by that. I am not sharp and insightful like I once was and I succumb to stress very easily, so I'm thinking I probably couldn't keep up with a book club. One thing I would really love to do is a life drawing class. We have two universities and a community college in my town and none of them offer life drawing or any art, for that matter. (I tried going back to school after schizophrenia four times and ended up in hospital every time.) My therapist has given me a couple of numbers, one to a Buddhist therapy group (they are not accepting new members right now) and another to a place where NOW meets. I am wary of anything requiring commitment and am quite shy. I am just not as full of life as I was before I was sick. But I am overcoming my reluctance to mention the schizophrenia, which is a good thing. I kept avoiding the subject until I just thought, admit it, it's better than trying to explain how you don't have a job or a family of your own, all the things most people have. I am very self conscious when I talk about my life before schizophrenia. It was all a long time ago. On a cigarette break just now though, I thought of my showreel. Maybe I could do something with that. Of course, I threw it all out in the trash during an episode, but I think I know where to get the material to put it back together. I'm just very nervous. But I was thinking, what interests me? Where do I start with that? It's all up in the air now. I am searching for something. I probably wouldn't make enough money at directing to have to lose my disability. It might be something nice to do, I am not sure. I am completely out of the loop in technical terms. I haven't directed since the digital revolution came into play... Maybe I will think about it. Maybe it's the Latuda, I don't know, but I feel more confident these days, a nice change from Haldol. I also thought I could stretch my pennies to an exercise class nearby, it's $30 a month. That's about doable, if I'm careful...
0 Comments
I'm a little nervous at night I notice... I take my meds at night so maybe it's just that I am ready for my dose. I'm not sure. I am not as sensitive to medication as some, I have noticed, so I have to work a little harder to discern. Usually I just try to rely on myself, since the signs are so subtle for me. I am working my way through "When Things Fall Apart" by Pema Chodron and tonight's reading was on loneliness. Every schizophrenic I have met knows profound loneliness... I try to think that I am alone and not so much that I am lonely. Sometimes it helps. But I often find myself wishing for someone to call on the phone. I make one phone call a week to a dear friend in London and I call my mom every day. But I long for some local pals to get coffee with or to generally discuss with. I would like news from a friend I can meet up with, preferably more than one. But so far this has not worked out. My outings with friends happen with years in between visits so I am making memories that way, each meeting is precious, but I miss the years I had when I could count on an invitation - or give one - and it was a normal occurrence. I am hoping the Latuda will improve my ability to make conversation. I am a bit stilted with Haldol. This is just in case my luck changes and I need conversational skills. I haven't had a regular friend or conversation in 17 years. My mom jokes about listening to me breathe when I'm on the phone, which also means she knows when I'm smoking, which I sometimes try to hide... Mental wards can be friendly places, but after being released it becomes harder to meet up - life steps in with its anxiety making demands and it becomes clear that the rest in hospital is over. Families also can be wary of hospital friendships I noticed a couple of times. Of course, hospital is very serious too. I once was invited to commit suicide with a guy I met in hospital. It can be a very sobering experience. I walked away from that guy because I was just too vulnerable myself to deal with him. I couldn't take it on. I was medicated and confused and in over my head. I think of him now and then and hope he has found peace. I have been in hospital eleven times and I am glad to be where I am now. I just still have self-confidence blocks and all that. I am petrified of becoming homeless somehow for example. It wakes me up at night. It's ok while my parents are alive, but I am going to be the one responsible for myself and my brother having our home when they are no longer with us and I get really nervous. On Haldol, I just stay in check, but if Latuda doesn't do that for me to some extent, I'm going to have to come back to the Haldol. I have a tendency to go walkabout. My father has picked me up out of trouble all over the Eastern Seaboard. I depend on my parents and I know it. I am fairly functional, but I am not consistently taking charge of my life enough to where I know beyond doubt I will be fine. I don't think this is just my schizophrenia. Even before my illness set in I was just not in fine control of my life. I was happy, but the first disaster was always going to hit hard. I just don't have a lot of reserve. Maybe this is something I can develop. I do find my attempts at Pema Chodron's exercises to be surprisingly uplifting sometimes. Maybe this will help me. I hope so.
So far so good on the latuda... I am still taking Haldol with it until next month, then solo. I notice that I have a wider range of thinking, just slight, but promising. I also wake up happier in the morning for some reason and my dreams are more normal and pleasing - no more zombie trains... What I am most looking forward to with the latuda is some weight loss. Unlike other antipsychotics, it does not cause weight gain and it has been mentioned as an appetite suppressant. This could be great for me. I have accepted my size but I can't really accept the low motivation I suffer with Haldol, which is a sedative also. Having said that, I would enjoy losing some weight and becoming more active and involved in life. I have developed a life with Haldol, a routine that keeps me from wasting away in bed, which I did when I was depressed a couple of years ago. I wake up, get breakfast and go to the computer, which I am generally on throughout the day. I let it stay online while I get lunch and make tea and all of that. At 2.30, I click onto the BBC Podcasts of 'The Archers', a soap opera about farming in the UK. It lasts about 15 minutes. I love it, but I enjoyed it more while listening on our Roberts radio in the kitchen of our little flat, after work while making dinner. It's hotting up, there's a paternity dispute going on, lol. I chat a lot on Facebook and in The IRC Village, a chat page for the mentally ill. There is a lot of talent to be found on that chat page. Six or seven poets, one of whom, 'sosindi', is exceptionally talented, as well as artists - 'zeused' is a great painter, and musicians, 'tracks' is interesting. I am always impressed by what the chatters come up with, it encourages me to appreciate and to think about other people. Of course it has some lesser contributors, but there is an 'ignore' button for that. At some point, usually in the afternoons or evenings, I leave the computer to read. I am re-reading 'When Things Fall Apart' by Pema Chodron. I get a lot out of her books. It is not recommended for schizophrenics to meditate, but I get a lot of insight out of reading her books, it's close to meditating in a way. The first book of hers I read was 'The Wisdom of No Escape', which I happened to find sitting out, off the shelf, put there by another shopper. It was a real help as almost as soon as I got it I started having my first psychotic break. Schizophrenia is a no-escape situation, so her thoughts were a good guide for me. I very much enjoyed reading her 'Start Where You Are', which I found in my local Barnes & Noble a few weeks ago. It was in the self help section. I had long despaired at the dearth of good reading in that store, which was much more to my taste in its New York and Los Angeles locations. I am glad we are finally getting some books like that in our corner of the world. All of the things Chodron presents are factors in my schizophrenic life, austerity, both financial and aesthetic, but her thoughts on kindness and compassion are very good for anyone for whom life did not work out the way it was expected or planned. I am not a Buddhist, but I am attracted to - and depend on - Buddhist thought to help me with my, I hestitate to call it 'recovery'. For I will never not be schizophrenic, there is no cure, but there is working with the meds to try and have a life, and that's what I do.
It has been a busy time for me. My brother, also schizophrenic, who doesn't take his meds, had a daughter when he was 19 and she was put up for adoption. A couple of years ago she contacted the whole family and introduced herself. We were all delighted. She came to visit about a week ago and brought her children and fiancé and she wanted to meet her dad. But my brother refused to meet her. My mother and father and I were nervous that that could happen and it did. We did our best to entertain her while she was here, but I know she must have been disappointed. She was in contact with my brother over the telephone and all of us thought that was good. But my brother has not been on top form for about six months. It was just kind of awful, although I am glad I met my niece. I am not used to socializing at all and I started having hallucinations and voices on the first day of their visit. I was just tired and nervous. I was happy too, but my episodes seem to happen when I am under social pressure. I saw my psychiatrist on Monday and I allowed her to switch my medicine, Haldol, for Latuda. For the month of April, I will be taking both the Haldol and the Latuda and then we'll drop the Haldol. It is a bit nervewracking. So far I am doing well, but I was very used to my Haldol and had worked with it a lot in the six years I had been on it. But Haldol is a bit of a blunt instrument. It knocks out most emotions and doesn't allow background thought. I haven't been able to cry with Haldol, which is a weird feeling. Not that I'm a crier... The Latuda is meant to be very good, it's relatively new and it doesn't have as a side effect weight gain. In fact, it is an appetite suppressant and I have already noticed that. So I am looking forward to losing some of the weight Haldol and, previously, Zyprexa put on me. Some 90 pounds! I had complained to my psychiatrist that I had been struggling with low motivation and for the second time, she mentioned Latuda. So here I am. I am looking forward to some improvements and will be talking about them here when I can.
An online friend read a bit of my previous post and declared it too heavy. I think that was because of the way I talk about losing hope in the way Buddhists practice it. For a few years now, I have been working on losing hope as a way of accepting my schizophrenia for the fact that it is. I was tired of hoping and trying and failing. Schizophrenia for me has meant that my old approaches to life were no longer working. Now I just take each day as it comes. When I am bored, I try to reason with myself about it, remembering all the times I had tried to do what I know how to do and failed. For instance, four times I tried to go back to school. School is normally easy for me. I always did well. I was doing well each of the four times I tried to go back to school, but I still ended up in the hospital. Now that I have resigned myself to my medicine, I am too dull of wit to succeed at study. But I do read. I read Buddhist books because I like the way they explain how to deal with unwanted thoughts - schizophrenia brings a lot of unwanted thoughts with it. Buddhist books teach the cultivation of compassion towards oneself and others. This alone as calmed me down a lot about being mentally ill. Buddhism also deals with the demons that can plague thought and although I had no use for this when I was healthy - no demons - I find it useful now. But I have been thinking and studying this for a long time now and I think I can afford to stop thinking of myself as primarily schizophrenic and start opening myself up to more of life's opportunities. For example, this past weekend my niece and her family came to visit. It was my first time meeting her, she was adopted 28 years ago. And although I wanted to explain that I was schizophrenic and on medication that dulls my mind and therefore my ability to make conversation, there was no time for that. There was too much to learn about these family members and the children needed attention. I was glad not to have the occasion to explain. It made me realize how much of my own company I have been keeping these past years. I don't see friends in real life very often, only a couple of times a year if I'm lucky. And I haven't had much success in making new friends here. I spend most of every day online in my schizophrenia chat page. I think a Buddhist would say it's time to let go. Maybe I could spend less time on the computer being a schizo and spend more time being the real life me. I have no more questions to be answered about being a schizo and I know from the chat page that my problems with the disease are not limited to just me. We are all bored and lonely and smoking too much. We all have misgivings about medications and treatments in general. I would like to live irl now. I still keep in contact with my online friends, but I need to have more interaction. On Sunday I spent almost 8 hours entertaining my niece and her children and I started hallucinating and hearing voices toward the end of the day, probably just from exhaustion and anxiety. But I was still having a lovely time. I am very happy to welcome my niece and her family as part of our family. This was my overriding joy. So I learned that, contrary to my lonely, frightened musings, I am not alone and that other people will contribute. It was so nice to be surrounded by new faces and new ideas. I have become something of a hermit and I would like to leave my cave and rejoin society. One thought a friend suggested was baking something and inviting someone over. I thought I could make something for my neighbor. We speak every time we see each other, but it would be nice to do more. I noticed that making friends as an adult requires more effort, it's not like being in school or at work where contact with people can be taken for granted. If I want to make friends, I'm going to have to extend myself first. That is where I am.
|
Archives
June 2017
|