2.27.10
I am about to turn out my light and go to bed in the hopes of waking up perky and early tomorrow. "Perky" is one of my mother's words and although not completely accurate as to what I want to convey it does hold the optimism I feel when I wake up without my brain feeling like a shredded tire on hot asphalt under the August sun and my sternum feeling itself being split down the middle and my innards eviscerated. This is how I've been feeling for over a week, deciding and deciding again that I can move out of my halfway house, then deciding I can't then deciding I can, and so forth. I have felt frustrated with my conversations with Dr. M as if he is not listening to me, that our conversations are an exchange of lofty ideas and oft repeated yet unfulfilled plans. Then I realized what I wanted was for him to tell me could move out and to promise it would be ok; a fantasy along the lines of him being able to fulfill my plans for me. As he said in his office over a week ago when I said, "you really mean I can move out?!", "Oh, now we are going to pretend I am the boss?" That has been the frustration with this decision/non decision, I think--I have wanted other people not only to make it for me, but to guarantee its success, whether it is to stay here or go. I've been wrestling it in a million ways, but it always comes back to it being my decision. As I've written before, I've just come to the realization that all that lies between me and ruin is the thin membrane of myself, like the diaphragm muscle causing the lungs to inflate and separating the thoracic and abdominal cavities. My life depends on me.
This knowledge, new to the marrow of my bones at age 41, reminds me of the sessions I spent in my early twenties with my relational therapist, a young but kind and intelligent woman whom I immediately looked up to as someone of authority. We sat in her office for hours as I tried to force her to say that we are all ultimately alone. She would not say it. She hedged and qualified but would not come right out and agree with me. I wish she had, because then we could have started working on things from there--from my utter loneliness and my inability to take care of myself and my sickness or even able to tell the two apart; in fact I've just stumbled across the feeling that there is actually more to me than disease since I've been writing this blog.
I don't think I was asking her to doom me to a life of existential loneliness. I think, in fact, I was asking her to help me find a way out of it by retrieving my power from the jaws of my illness. Instead we endlessly analyzed my mother's and my relationship, with my family as I had grown up. We knocked on the door of a possible PTSD disorder but never found one. We analyzed each overdose I took, each new scar on my arm from a razor I had pulled apart and assaulted myself with, each time I refused my meds or dumped them down the toilet, each self-inflicted cigarette burn. I guess I'm saying we could have helped me so much more if we had just focused on wrestling me, my very self, out from under my symptoms and behavior. But I am honest, so I'll say it; she tried her best. She tried, in the later years, to tell me I had an illness over and over again but it I could not let it sink in, as much as I wanted to. The thoughts go like this--"If I have an illness and accept it then I will feel better then I will get well and fulfill my dreams and fly away from everyone I need and I will be all alone in the world and unable to take care of myself." This is the distortion that keeps me dead in my tracks, empty, dreams unfulfilled, meaningless. I simply can't shake it. So I could not let her help me. As hard as we both tried. My drive to be better is deep and ingrained but my attempts in the face of such backwards delusions were, and often still are, made to look Herculean while all the time I keep checking to see if everyone is looking and that I am doing just what they want me to do and will guarantee me a good outcome. It's like those scars on my arms--they are faint because they were not deep cuts; they were only communications, calls out to Dr. R., Dr. H, Dr.Y, Dr. K (all my early treaters) and my parents ultimately, to hold on to me, to not let me go. I didn't really want to be fixed, if so I would be alone and helpless my mind tells me. I just wanted to be held on to. And I have been. My family has stuck with me and Dr. M has been treating me for at least twenty years, and M. for around thirteen and I'm here at this halfway house for about three. I am being held in kindness and understanding and respect and a funny thing is happening-I am learning to make decisions of my own. I am learning, right now, that I, and only I, can decide whether to live longer here in this supported living house or to go to my own apartment. And even more important it is I, and only I, I repeat, that will live the consequences of either decision, like stains on my clothes--in inescapable.
Rereading this I am recalling a pastel drawing I made of a blue heron my uncle had photographed and published in a book and given to me for Christmas. I was in my art group and I was working on this drawing. It was hard and yet what I remember was letting all the harsh, distorted, paranoid thoughts consciously drift through my brain instead of letting them lodge there. I really started to feel like I owned that drawing. Pure ownership. It felt great.
I've been saying lately that every day is a work of art, given my illness and being in remission from thyroid cancer. Ever day is a work of art. Every day is MY work of art. My blue heron.
I'm drifting a bit here into the department where the elves start wrapping things up in nice little bows. Such completions don't exist,so I will leave you with what i have written. And just to say where i stand tonight; I am in no way ready to leave my halfway house. I am only at the beginning of building a meaningful life for myself. I know part of doing so will require me to shift my values. Instead of killing myself off just to get rid of this illness and achieve some great notoriety or something, I must let who I am change in the face of something as immutable as this illness. I must rethink what is important to me, how I value myself. A degree,a career, a husband may not be the path to freedom for me. Nor might be an apartment with cool furniture an space for an office and an easel to live in alone. I've always been terrified to change but maybe jut maybe it is the way to live an easier life.
I'll leave it at that. My butt is getting sore!
wow...
2.24.10
...a lot has happened since I last wrote. Well, a whole lot of nothing, really. Then a big decision, made yesterday, which I am already doubting--can I, can I not, can I, can I not, should I, should I not live alone? I know I shouldn't, but I don't know what else to do. I can't live with just one roommate--the dynamics there with all my insistent guilt and anger and fear mucking up my relationships would poison the household almost immediately. I'd always be thinking, "What did that look mean? Is she mad? Do I dare tell her to wash her dishes?" I'd be unable to make eye contact and most days the slightest annoyance would become a huge--unwarranted--rage.
At least I think this is what would happen. It happens where I live now but I can handle it. Could I handle it on my own? Without staff? Without fourteen other people do diffuse my anger, fear, guilt, suicidal feelings, distorted thoughts, etc.
Then I look back at those words, "I know I shouldn't [live alone.]" Why not? I've done it before and most of that time it was successful. It was only that last year or so when I had no structure and lived in those last two dreary apartments and had only one friend that I became so depressed and my life in such danger. Towards the end I also had a three month case of vertigo that kept me in bed. Then I was on Clozaril which had miserable side-effects.
The questions are, am I different now and if so can I maintain that change. Yes,I am much different. I am much more grown up and enjoy moments of confidence. What I mean there is that I know, deep in my heart, that the only thing that stands between me and the ravages of my illness is myself. Not my mother, not Dr. M, not M. Ultimately it is just me. And I am up to the cause. Granted, I get a lot of help form these people--they help sustain me, but they do not live for me.
I'm just blabbing here, writing a sort of groundless poetry of the mind, citing all the worn down points. What I really want to know is how am I going to survive waking up alone, without S. to smile at in the bed across the room from me? How am I going to make the morning transition from poor mood to ready to take on my day without the grunted good mornings from my housemates as we glide about the kitchen fixing breakfast and getting ready for the day. How will I wake up fully without shower negotiations and asking and being asked "What are you up to today?" How am I going to feel real without getting annoyed at the dishes being left in the sink by others? How am I going to feel effective and purposeful without being able to report inappropriate behavior on someone's part, speaking for one of our young residents who can't seem to speak for herself? How am I going to feel special without receiving from and giving notice to others at house meeting for the noteworthy things we have done throughout the week?
And how will I feel living in the somewhat depressed area I have chosen to live in and not have this gorgeous new library and be able to walk about these vibrant city streets for gourmet ice cream or delectable Indian food or at the crack of dawn along the famous river? How will I feel having my clubhouse as my sole community instead of living with a houseful of intelligent (very), functional, talented, active, people?
And how will I prevent myself from quitting? The first serious downturn in mood may bring on a rash of quitting--volunteering at the farm which I will start shortly, going to my art group, perhaps volunteering at a food pantry close to my "to be" neighborhood? I quit things when I live alone, because I wake to my pain alone and I am not forced to leave the house at 10am until 2pm. Maybe S.T at my clubhouse can help.
How about the nights. Will I become glued to Law and Order reruns again? How will I cook each night instead of the one meal a week I am responsible for now, with the rest of the week, being served up to me? How will I food shop when I am steeped in pain, recovering from pain? How will I spend my nights? I can't just sit in the living room and listen to the conversation and watch the traffic go by because there will be none. I will even miss our cat. I cannot have a cat--I tried before (both cats and a dog) and could not take care of them. I keep thinking I will have lots of plants, but it's not he same. Will I really be doing more art and writing or will it be just as hard as it is at my halfway house to get over that hump of sitting there staring, to creating? Will I get so lonely that I sit, holding my phone, going through my contacts and end up calling my mother more times a week than is good for us?
How will I afford it all? Rent is taken care of, but how about food, utilities, possibly some aftercare treatment (someone stopping by a couple nights a week with dinner,)cleaning service maybe once a month, cable, wi-fi? Do I have to get a job? I don't want to take any more money from my parents than I already do. I hate my living room furniture, but I have just realized, it is too expensive to replace right now. I must make do with the cool, dark colors when what I is warm beiges, golds, and whites. My furniture depresses me--brings back bad times, I wish I could trade almost all of it in, but I don't have the money to replace it and I don't want to dive into my investments.
Will the boundaries between me and my friends, once we are closer in miles, become blurred? Will my friends expect more emotional support from me, more of my time, more of my understanding, listening, cooing? Or is it me, that has fantasies of casual drop-ins and teas, seeing them more, getting more help from them (i.e. picking up stuff from my apartment when I am in the hospital?) Will I really be walking S.'s dog? Or will it remain the same. How will I survive the seemingly catastrophic guilt of saying no to my friends despite our proximity? I think the trick is not to hang on to them so they won't hang on to me.
What will I do when something breaks? Or a ceiling bulb needs changing or the toilet backs up? At my house now there is always an element of passing things off to some other mystery resident. I may have the energy to wash the kitchen rags one day, but I may pass by the dishwasher that needs to be empty another day. It evens out, but how will I be when I have to do it all? And I want cleanliness, order, threes squares a day. I know I will not be happy with dishes in the sink, ordering out pizza, calzones, chinese food all week. How will I do all this, plus...
...manage a super complicated medication regime, pay my bills, reminding my mum to pay rent, insurance, etc, deal with all the mail, manage my finances,etc. HOW WILL I DO IT ALL? I am not happy with disorder.
These are the struggles that lie ahead for me. Like Dr. M said, we just have to keep our fingers crossed. I wish I had a better answer. I wish I could talk about confidence and all that shit and really mean it, but these things, what I have just written about are what really matters. Ouch. I'm scared.
...a lot has happened since I last wrote. Well, a whole lot of nothing, really. Then a big decision, made yesterday, which I am already doubting--can I, can I not, can I, can I not, should I, should I not live alone? I know I shouldn't, but I don't know what else to do. I can't live with just one roommate--the dynamics there with all my insistent guilt and anger and fear mucking up my relationships would poison the household almost immediately. I'd always be thinking, "What did that look mean? Is she mad? Do I dare tell her to wash her dishes?" I'd be unable to make eye contact and most days the slightest annoyance would become a huge--unwarranted--rage.
At least I think this is what would happen. It happens where I live now but I can handle it. Could I handle it on my own? Without staff? Without fourteen other people do diffuse my anger, fear, guilt, suicidal feelings, distorted thoughts, etc.
Then I look back at those words, "I know I shouldn't [live alone.]" Why not? I've done it before and most of that time it was successful. It was only that last year or so when I had no structure and lived in those last two dreary apartments and had only one friend that I became so depressed and my life in such danger. Towards the end I also had a three month case of vertigo that kept me in bed. Then I was on Clozaril which had miserable side-effects.
The questions are, am I different now and if so can I maintain that change. Yes,I am much different. I am much more grown up and enjoy moments of confidence. What I mean there is that I know, deep in my heart, that the only thing that stands between me and the ravages of my illness is myself. Not my mother, not Dr. M, not M. Ultimately it is just me. And I am up to the cause. Granted, I get a lot of help form these people--they help sustain me, but they do not live for me.
I'm just blabbing here, writing a sort of groundless poetry of the mind, citing all the worn down points. What I really want to know is how am I going to survive waking up alone, without S. to smile at in the bed across the room from me? How am I going to make the morning transition from poor mood to ready to take on my day without the grunted good mornings from my housemates as we glide about the kitchen fixing breakfast and getting ready for the day. How will I wake up fully without shower negotiations and asking and being asked "What are you up to today?" How am I going to feel real without getting annoyed at the dishes being left in the sink by others? How am I going to feel effective and purposeful without being able to report inappropriate behavior on someone's part, speaking for one of our young residents who can't seem to speak for herself? How am I going to feel special without receiving from and giving notice to others at house meeting for the noteworthy things we have done throughout the week?
And how will I feel living in the somewhat depressed area I have chosen to live in and not have this gorgeous new library and be able to walk about these vibrant city streets for gourmet ice cream or delectable Indian food or at the crack of dawn along the famous river? How will I feel having my clubhouse as my sole community instead of living with a houseful of intelligent (very), functional, talented, active, people?
And how will I prevent myself from quitting? The first serious downturn in mood may bring on a rash of quitting--volunteering at the farm which I will start shortly, going to my art group, perhaps volunteering at a food pantry close to my "to be" neighborhood? I quit things when I live alone, because I wake to my pain alone and I am not forced to leave the house at 10am until 2pm. Maybe S.T at my clubhouse can help.
How about the nights. Will I become glued to Law and Order reruns again? How will I cook each night instead of the one meal a week I am responsible for now, with the rest of the week, being served up to me? How will I food shop when I am steeped in pain, recovering from pain? How will I spend my nights? I can't just sit in the living room and listen to the conversation and watch the traffic go by because there will be none. I will even miss our cat. I cannot have a cat--I tried before (both cats and a dog) and could not take care of them. I keep thinking I will have lots of plants, but it's not he same. Will I really be doing more art and writing or will it be just as hard as it is at my halfway house to get over that hump of sitting there staring, to creating? Will I get so lonely that I sit, holding my phone, going through my contacts and end up calling my mother more times a week than is good for us?
How will I afford it all? Rent is taken care of, but how about food, utilities, possibly some aftercare treatment (someone stopping by a couple nights a week with dinner,)cleaning service maybe once a month, cable, wi-fi? Do I have to get a job? I don't want to take any more money from my parents than I already do. I hate my living room furniture, but I have just realized, it is too expensive to replace right now. I must make do with the cool, dark colors when what I is warm beiges, golds, and whites. My furniture depresses me--brings back bad times, I wish I could trade almost all of it in, but I don't have the money to replace it and I don't want to dive into my investments.
Will the boundaries between me and my friends, once we are closer in miles, become blurred? Will my friends expect more emotional support from me, more of my time, more of my understanding, listening, cooing? Or is it me, that has fantasies of casual drop-ins and teas, seeing them more, getting more help from them (i.e. picking up stuff from my apartment when I am in the hospital?) Will I really be walking S.'s dog? Or will it remain the same. How will I survive the seemingly catastrophic guilt of saying no to my friends despite our proximity? I think the trick is not to hang on to them so they won't hang on to me.
What will I do when something breaks? Or a ceiling bulb needs changing or the toilet backs up? At my house now there is always an element of passing things off to some other mystery resident. I may have the energy to wash the kitchen rags one day, but I may pass by the dishwasher that needs to be empty another day. It evens out, but how will I be when I have to do it all? And I want cleanliness, order, threes squares a day. I know I will not be happy with dishes in the sink, ordering out pizza, calzones, chinese food all week. How will I do all this, plus...
...manage a super complicated medication regime, pay my bills, reminding my mum to pay rent, insurance, etc, deal with all the mail, manage my finances,etc. HOW WILL I DO IT ALL? I am not happy with disorder.
These are the struggles that lie ahead for me. Like Dr. M said, we just have to keep our fingers crossed. I wish I had a better answer. I wish I could talk about confidence and all that shit and really mean it, but these things, what I have just written about are what really matters. Ouch. I'm scared.
bats in the belfry
2.20.09
I've got the infamous bats in the belfry that crazy people are often accused of having, especially in the nineteen-twenties, I think.
Anyway, usually they are just nestled in the trees, shifting their weight, rustling the leaves, threatening me with their presence, causing my brain to be always aware,always on guard, always distracted by their presence, frightened. But sometimes they explode, swooping down from the treetops en masse with their mouse like bodies and their thin rubbery wings obscuring reality completely, enveloping me as I stumble into a bottomless swamp of guilt and fear and anger until I can't walk down the sidewalk with my grocery bags so I have to use a guest pass to park in front of the house.
What more is there to say? I know. I survived. Again, I survived. I took extra medication, I paged my doctor two hours after leaving his office and sobbed to him, "I know it (the guilt,terror, fear, anger, the scenarios being played out in my mind's eye) isn't true, I know it isn't real (because he has told me as much) but it FEELS real, I BELIEVE it," and I really do.Despite this, I accepted a little bit of help with dinner (I was in charge, solo, to make dinner for the house last night.) I talked to my dad without a trace of pain in my voice, wishing him a happy birthday. I fielded my pain and fear when he said "have a good weekend." (What do you mean? I won't talk to you all weekend? When did that happen?) I left L. a message that I couldn't see her on Sunday, which brought down the bats in a near blizzard of flapping blackness, entangled in my hair they caused me to writhe in pain and fear and guilt all night. I revealed my situation to staff. I left some pans for my cooking partner, doing clean-up, to clean instead of leaving a spotless kitchen for him as I usually do. I met with the same staff member and, when she tried to explore my guilt,snapped at her to not even try, that would not help, I just needed to get through the night. And I did. I told her I could not stay up until my "milieu" commitment was through at 9pm, that I would be short my four milieu requirements for the week and she pardoned me. I took my night meds and was in bed by 7pm.
I woke up distraught, still feeling my way through the blackness of the winged mice. Should I call L? Should I not? What should I say? How much should I apologize? Will our friendship last? Why does everyone glomm on to me so much. Why does S. drag me into the bathroom to pull down her pants and show me her bruise? Will L. really drop all her friendships for me once I live closer to her? How can I protect myself from other people. Why does everyone NEED me so much? I feel cornered, sucked dry, unknown, guilty,angry, mean, withholding, austere. This is dangerous stuff to say online but let me put in a foot note here--the depth of these feelings, the intractable nature of them, the inability for me to learn not to be guilty every time L. understands when I can't see her and carries on just fine, create a bat stew--a bubbling cauldron of bloody and black and still biting bats that I am sunken into, with my head barely above the sloshing sickness of it all.
And that's what it all is--sickness. Distortions, delusions, irrationalities, psychosis--pick a word, any word. At face value my complaints sound average and a striation of them are, but my cries are hysterical and deep because I yelling out for someone to come get me out of this f'in pot of bat guts where all becomes extreme and distorted. But no one can and that is why, though I will forget it in my next episode, it is worth saying that I made it through. That I've made good choices and ended up with the week-end I want (today to myself, tomorrow a movie with S.) That I am aware of the extra stresses that are on me (namely motion made toward the possibility of moving out of here at the end of the summer and also planning a vacation on my own to be taken in two weeks.) These, I'll briefly say, are stresses because they are actions and decisions I'm making on my own terms (aaarghhh! more guilt, fear, anger.) So I'm learning to say that making it through counts. That it almost counts more than the experience of pain, because that is just mostly sickness, mostly unreal,while my movie with S. tomorrow and my recuperating today are real. While this blog is real. While reading the book I got out of the library is real. While my decisions, even, are real. While the Indian food I will get myself today is real. While the nice conversation I had with K. yesterday is real. ( I'm trying to convince myself here, if you haven't noticed.) Bats, I know, are not real. But for something not real they can sure abscond with my brain. Every day in little bits, some days, the whole thing they fly away with. It is so painful to have something so out of control going on up there.
I have to say, I now understand why my meditation teacher of the course I am taking said that meditation is not for everyone, when I asked him if it could apply to mental disease, this Buddhist belief that there is an end to suffering. Meditation cannot touch the wild bats. It can really help with my attachment issues that make it hard to live with such an out of control force in my mind, but it hit me last night that, this, this storm that was so bad last night is out of the realm of rationality,immune to even kryptonite, shall we say, and no amount of meditation can take it way. But I maintain that meditation helps me when things aren't quite so bad and has helped me with my relationship with my mother mainly and helps me with my sense of equanimity while facing this illness. I could go on more but R. just called and I want to call her back.
I've got the infamous bats in the belfry that crazy people are often accused of having, especially in the nineteen-twenties, I think.
Anyway, usually they are just nestled in the trees, shifting their weight, rustling the leaves, threatening me with their presence, causing my brain to be always aware,always on guard, always distracted by their presence, frightened. But sometimes they explode, swooping down from the treetops en masse with their mouse like bodies and their thin rubbery wings obscuring reality completely, enveloping me as I stumble into a bottomless swamp of guilt and fear and anger until I can't walk down the sidewalk with my grocery bags so I have to use a guest pass to park in front of the house.
What more is there to say? I know. I survived. Again, I survived. I took extra medication, I paged my doctor two hours after leaving his office and sobbed to him, "I know it (the guilt,terror, fear, anger, the scenarios being played out in my mind's eye) isn't true, I know it isn't real (because he has told me as much) but it FEELS real, I BELIEVE it," and I really do.Despite this, I accepted a little bit of help with dinner (I was in charge, solo, to make dinner for the house last night.) I talked to my dad without a trace of pain in my voice, wishing him a happy birthday. I fielded my pain and fear when he said "have a good weekend." (What do you mean? I won't talk to you all weekend? When did that happen?) I left L. a message that I couldn't see her on Sunday, which brought down the bats in a near blizzard of flapping blackness, entangled in my hair they caused me to writhe in pain and fear and guilt all night. I revealed my situation to staff. I left some pans for my cooking partner, doing clean-up, to clean instead of leaving a spotless kitchen for him as I usually do. I met with the same staff member and, when she tried to explore my guilt,snapped at her to not even try, that would not help, I just needed to get through the night. And I did. I told her I could not stay up until my "milieu" commitment was through at 9pm, that I would be short my four milieu requirements for the week and she pardoned me. I took my night meds and was in bed by 7pm.
I woke up distraught, still feeling my way through the blackness of the winged mice. Should I call L? Should I not? What should I say? How much should I apologize? Will our friendship last? Why does everyone glomm on to me so much. Why does S. drag me into the bathroom to pull down her pants and show me her bruise? Will L. really drop all her friendships for me once I live closer to her? How can I protect myself from other people. Why does everyone NEED me so much? I feel cornered, sucked dry, unknown, guilty,angry, mean, withholding, austere. This is dangerous stuff to say online but let me put in a foot note here--the depth of these feelings, the intractable nature of them, the inability for me to learn not to be guilty every time L. understands when I can't see her and carries on just fine, create a bat stew--a bubbling cauldron of bloody and black and still biting bats that I am sunken into, with my head barely above the sloshing sickness of it all.
And that's what it all is--sickness. Distortions, delusions, irrationalities, psychosis--pick a word, any word. At face value my complaints sound average and a striation of them are, but my cries are hysterical and deep because I yelling out for someone to come get me out of this f'in pot of bat guts where all becomes extreme and distorted. But no one can and that is why, though I will forget it in my next episode, it is worth saying that I made it through. That I've made good choices and ended up with the week-end I want (today to myself, tomorrow a movie with S.) That I am aware of the extra stresses that are on me (namely motion made toward the possibility of moving out of here at the end of the summer and also planning a vacation on my own to be taken in two weeks.) These, I'll briefly say, are stresses because they are actions and decisions I'm making on my own terms (aaarghhh! more guilt, fear, anger.) So I'm learning to say that making it through counts. That it almost counts more than the experience of pain, because that is just mostly sickness, mostly unreal,while my movie with S. tomorrow and my recuperating today are real. While this blog is real. While reading the book I got out of the library is real. While my decisions, even, are real. While the Indian food I will get myself today is real. While the nice conversation I had with K. yesterday is real. ( I'm trying to convince myself here, if you haven't noticed.) Bats, I know, are not real. But for something not real they can sure abscond with my brain. Every day in little bits, some days, the whole thing they fly away with. It is so painful to have something so out of control going on up there.
I have to say, I now understand why my meditation teacher of the course I am taking said that meditation is not for everyone, when I asked him if it could apply to mental disease, this Buddhist belief that there is an end to suffering. Meditation cannot touch the wild bats. It can really help with my attachment issues that make it hard to live with such an out of control force in my mind, but it hit me last night that, this, this storm that was so bad last night is out of the realm of rationality,immune to even kryptonite, shall we say, and no amount of meditation can take it way. But I maintain that meditation helps me when things aren't quite so bad and has helped me with my relationship with my mother mainly and helps me with my sense of equanimity while facing this illness. I could go on more but R. just called and I want to call her back.
2.17.10
In two days it will be my father's seventy-first birthday. How did that happen? How did he get old? How did he stand trial against the federal government, have neurosurgery that left him without full rotation of his neck, have various procedures and surgeries to get rid of the polyps in his nose so that he could breathe better? How did he have cancer and survive, how did he develop high blood pressure, how is it that now when he gets off the couch or out of the car he has to lean back to collect momentum,lurch himself up or out and then sort of skip to catch himself once he approaches vertical? How is it that my mother tells me dad likes to sit under the sun on the lanai of their Florida home because it soothes the rash that has developed on his back that itches so badly. My father's body is rotting, I think. How is it finally, that my father and I sit on the kitchen couch one summer day a year or so ago and he tells me he used to be afraid of dying and now he is not? Shit, I'm afraid of his dying and I jump up and blur him out with what feels like nonsensical mumble.
But as I write down all of these ailments, all of these steps of living decomposition, my father, MY father, rises above them and I feel relieved. I'm not quite sure what relieves me. I don't want to sound trite and say it is his existence beyond the physical, his spirit, whatever. The only word that seems to fit at all is "trust." I trust my father. Implicitly. Fully. And he is teaching me to trust myself. I trust him to die when he knows that it is tight and I trust myself to survive it. I trust that I love my father, and I trust that he loves me. Simple, ordinary love.
Once, when I was,I think, nineteen years old, I was inpatient on a psych. unit at a general hospital. I had been at the private hospital I have since been to about fifty times but our insurance ran out and I was still too much of a danger to myself to be discharged--there was no question. I was a typical teenage mess with a bad psychiatric illness thrown in that was years from being diagnosed. I was being treated for the wrong things in the wrong way. I didn't know this except somewhere in my deepest places where real knowledge, real seeing resides. So I was angry, frustrated, tugging and pulling and at my doctors and my parents and there ministering like they were ill-fitting clothes I just wanted to rip off my body and stomp on. No one was getting it right, and I felt bad. Really, really bad.
So my insurance runs out and I am to be shipped off to a general hospital. But not quite shipped. There are two choices and my parents take a day to go and look at them both. A rainy, winter day and they go out and transverse the city to check out what might be best for their youngest daughter who missed Thanksgiving and missed Christmas because she was crawling around an empty room in a psych hospital trying to kill herself and getting restrained again and again for each suicidal gesture. I could easily have been abandoned but off went mum and dad, gravity in their hearts and picked the hospital that had the most organized group schedule and activity plan. And off I went.
We had some family therapy there with a guy who looked, my mother and I both agreed, a bit like Robert Redford. He was great. He used baseball analogies for my dad and kept it simple and straightforward, with little digging into the past and more of a focus on "what to do now." He was the one who set up the weekly dinners I would have with my parents once I got to the farm I lived at for three years after discharge. Still, when meeting with him individually once, I did manage to try to kick him then run out of the office. I wasn't easy.
And that is just what my father said one day while meeting with Robert Redford, there. He said, my dad said, "Love is a commitment and I don't know if I have the energy to stay committed to you." Wow. That scared me. Love is a commitment. Love can be withdrawn. Love can be too hard. Love must be respected. I must respect my dad's love. Love is hard work. Yes, that is it. Love is hard work. And dad was working so hard and didn't know if he could keep it up.
Lately as I go through my days I sort of think "what would my dad do?" like those bracelets people used to wear--"WWJD" (what would Jesus do.) But dad is not Jesus. He is a man. His love is ordinary. It is love of the working man. It is hewn of spirit and brawn. Inspiration and effort.
Dad is so real.
I don't know how to end this and my time is running up and I need to go shovel my car out so off I go.
In two days it will be my father's seventy-first birthday. How did that happen? How did he get old? How did he stand trial against the federal government, have neurosurgery that left him without full rotation of his neck, have various procedures and surgeries to get rid of the polyps in his nose so that he could breathe better? How did he have cancer and survive, how did he develop high blood pressure, how is it that now when he gets off the couch or out of the car he has to lean back to collect momentum,lurch himself up or out and then sort of skip to catch himself once he approaches vertical? How is it that my mother tells me dad likes to sit under the sun on the lanai of their Florida home because it soothes the rash that has developed on his back that itches so badly. My father's body is rotting, I think. How is it finally, that my father and I sit on the kitchen couch one summer day a year or so ago and he tells me he used to be afraid of dying and now he is not? Shit, I'm afraid of his dying and I jump up and blur him out with what feels like nonsensical mumble.
But as I write down all of these ailments, all of these steps of living decomposition, my father, MY father, rises above them and I feel relieved. I'm not quite sure what relieves me. I don't want to sound trite and say it is his existence beyond the physical, his spirit, whatever. The only word that seems to fit at all is "trust." I trust my father. Implicitly. Fully. And he is teaching me to trust myself. I trust him to die when he knows that it is tight and I trust myself to survive it. I trust that I love my father, and I trust that he loves me. Simple, ordinary love.
Once, when I was,I think, nineteen years old, I was inpatient on a psych. unit at a general hospital. I had been at the private hospital I have since been to about fifty times but our insurance ran out and I was still too much of a danger to myself to be discharged--there was no question. I was a typical teenage mess with a bad psychiatric illness thrown in that was years from being diagnosed. I was being treated for the wrong things in the wrong way. I didn't know this except somewhere in my deepest places where real knowledge, real seeing resides. So I was angry, frustrated, tugging and pulling and at my doctors and my parents and there ministering like they were ill-fitting clothes I just wanted to rip off my body and stomp on. No one was getting it right, and I felt bad. Really, really bad.
So my insurance runs out and I am to be shipped off to a general hospital. But not quite shipped. There are two choices and my parents take a day to go and look at them both. A rainy, winter day and they go out and transverse the city to check out what might be best for their youngest daughter who missed Thanksgiving and missed Christmas because she was crawling around an empty room in a psych hospital trying to kill herself and getting restrained again and again for each suicidal gesture. I could easily have been abandoned but off went mum and dad, gravity in their hearts and picked the hospital that had the most organized group schedule and activity plan. And off I went.
We had some family therapy there with a guy who looked, my mother and I both agreed, a bit like Robert Redford. He was great. He used baseball analogies for my dad and kept it simple and straightforward, with little digging into the past and more of a focus on "what to do now." He was the one who set up the weekly dinners I would have with my parents once I got to the farm I lived at for three years after discharge. Still, when meeting with him individually once, I did manage to try to kick him then run out of the office. I wasn't easy.
And that is just what my father said one day while meeting with Robert Redford, there. He said, my dad said, "Love is a commitment and I don't know if I have the energy to stay committed to you." Wow. That scared me. Love is a commitment. Love can be withdrawn. Love can be too hard. Love must be respected. I must respect my dad's love. Love is hard work. Yes, that is it. Love is hard work. And dad was working so hard and didn't know if he could keep it up.
Lately as I go through my days I sort of think "what would my dad do?" like those bracelets people used to wear--"WWJD" (what would Jesus do.) But dad is not Jesus. He is a man. His love is ordinary. It is love of the working man. It is hewn of spirit and brawn. Inspiration and effort.
Dad is so real.
I don't know how to end this and my time is running up and I need to go shovel my car out so off I go.
back in the saddle
2.16.10
Here I am again, after a two day hiatus. I'm feeling excited, relieved, overwhelmed, pressured and frightened. Happy to be writing, not knowing what to write, wanting it to come out perfectly. The perfect cocktail for a kind of buzzing urgent paralysis, as if I am horseback, digging my heels into the creature's flanks to urge him forward while pulling back on the reins to hem him in. I am both beast and rider. All in all a lonely situation.
I did however tell K. this morning that I was coming to the library to write this morning. I am telling no one I am blogging because when that gets played out in my mind there is an uprising in the house against me and a furious end to my friendship with L. too. But I did share that partial truth with K. and it felt pretty good--a whisper of relief of being known. I even told B. last night that I, too, like him, feel life should be easy and that I get angry at myself and others when it is not. I mean really, really, really angry. I left the last part out to B. I felt cold squiggly fear in my chest after I bared my secret to him, but it passed.
And that is it. I live in secret, and I am getting tired of it. I live in secret. I write in secret. I am hard pressed to create art in my art group because I am not alone. I am either going to soar on my stead over that Olympic jump or I am going to balk at it and be sent flying over the rails and break my neck, the metaphorical dreams of being an Olympic rider only remaining as a taunting nightmare. There is no in between.
I realized last week that while I have things that mean something to me--this writing, making art, farming, meditation--they are like blocks of chalk--dry, dusty,diminishing in my silence. At B.'s concert there were so many people there for him. I've always been surprised that B. has such a following, that people thing he is a "great guy," when I have had so many problems with him. Indeed, when I first met him a year and a half ago i couldn't stand him. He didn't have an emotional or social boundary to save his life and I had not way to control what came out of his mouth. When some invasive comment did fly out it invariable landed in my heart like a fish hook and I got terrified, with the requisite paranoid images flooding my brain.
But now he is so much better and I am able to sit with him lately and listen to him, giving him my time and attention and interest. And as I suspected, we have a lot in common. It's just that he says it, shamelessly, and I don't. His lack of guilt and shame is one of the last thing that perturbs me about him, while at the same time, I covet it. So last night, I let a little out with the comment about life should be easy, and that conversation had more meaning for me than this blog entry, or my paintings that hang on the wall in the living room for all to see. I've known it for a while now--a good, connected, conversation has more meaning for me than anything else.
So here's the question: can I bring people into my art, my writing? Can the blood of relationship, the lightness of social connection be infused into my dry assignations of meaning in my life? Can I have a conversation about something I've created and survive the criticism or the compliments? Either one, right now, stymies me and holds me in my tracks.
I have no idea who, if anyone, is reading this blog, yet I imagine I am getting all sorts of criticism: "dry writing," "self-indulgent," "boring," "examining her belly-button," just as an example.
But is it only my art and writing that needs opening up? Maybe I shouldn't even start there. I know when I do share I invariably stop doing whatever I am doing, even if it is just being me. Can "me" stand the test of "you?" Can my blogging stand the test of lousy comments if I were to allow comments? Or would the pressure to create constantly good writing cause me to shut down this blog if I got good feedback?
One might wonder what this has to do with being schizoaffective. It all sounds quite normally neurotic, doesn't it. But as my shrink said to me "you have a psychosis that masquerades as a neurosis." These struggles of meaning, isolation, loneliness and creative energy have deep and implacable tap roots, like beautiful water lilies on a pond that have roots down through the clouded, silty water down to the muddy bottom teeming with snapping turtles and underwater snakes (if they exist.) And that's the thing--my experience of these feelings are so extreme that they might not even exist and I am left to bushwhack my way through some fantastical underwater jungle. In the past year or so I have slowly given up trying sort through the roots, reeds, weeds, and dangerous reptiles and just tried to find a way to breath. Some would call this "keeping your head above water," a common phrase for an uncommon problem.
But I am a hybrid. Some part of the problem is uncommon--those underwater snakes. But they wrap themselves around what is often common--a wish to succeed, to have meaning, to love, to be connected--chocking these things and making them nearly impossible to achieve. (bad word if I'm thinking Buddhist.)
I must go now. My time is running up. More about this later.
Here I am again, after a two day hiatus. I'm feeling excited, relieved, overwhelmed, pressured and frightened. Happy to be writing, not knowing what to write, wanting it to come out perfectly. The perfect cocktail for a kind of buzzing urgent paralysis, as if I am horseback, digging my heels into the creature's flanks to urge him forward while pulling back on the reins to hem him in. I am both beast and rider. All in all a lonely situation.
I did however tell K. this morning that I was coming to the library to write this morning. I am telling no one I am blogging because when that gets played out in my mind there is an uprising in the house against me and a furious end to my friendship with L. too. But I did share that partial truth with K. and it felt pretty good--a whisper of relief of being known. I even told B. last night that I, too, like him, feel life should be easy and that I get angry at myself and others when it is not. I mean really, really, really angry. I left the last part out to B. I felt cold squiggly fear in my chest after I bared my secret to him, but it passed.
And that is it. I live in secret, and I am getting tired of it. I live in secret. I write in secret. I am hard pressed to create art in my art group because I am not alone. I am either going to soar on my stead over that Olympic jump or I am going to balk at it and be sent flying over the rails and break my neck, the metaphorical dreams of being an Olympic rider only remaining as a taunting nightmare. There is no in between.
I realized last week that while I have things that mean something to me--this writing, making art, farming, meditation--they are like blocks of chalk--dry, dusty,diminishing in my silence. At B.'s concert there were so many people there for him. I've always been surprised that B. has such a following, that people thing he is a "great guy," when I have had so many problems with him. Indeed, when I first met him a year and a half ago i couldn't stand him. He didn't have an emotional or social boundary to save his life and I had not way to control what came out of his mouth. When some invasive comment did fly out it invariable landed in my heart like a fish hook and I got terrified, with the requisite paranoid images flooding my brain.
But now he is so much better and I am able to sit with him lately and listen to him, giving him my time and attention and interest. And as I suspected, we have a lot in common. It's just that he says it, shamelessly, and I don't. His lack of guilt and shame is one of the last thing that perturbs me about him, while at the same time, I covet it. So last night, I let a little out with the comment about life should be easy, and that conversation had more meaning for me than this blog entry, or my paintings that hang on the wall in the living room for all to see. I've known it for a while now--a good, connected, conversation has more meaning for me than anything else.
So here's the question: can I bring people into my art, my writing? Can the blood of relationship, the lightness of social connection be infused into my dry assignations of meaning in my life? Can I have a conversation about something I've created and survive the criticism or the compliments? Either one, right now, stymies me and holds me in my tracks.
I have no idea who, if anyone, is reading this blog, yet I imagine I am getting all sorts of criticism: "dry writing," "self-indulgent," "boring," "examining her belly-button," just as an example.
But is it only my art and writing that needs opening up? Maybe I shouldn't even start there. I know when I do share I invariably stop doing whatever I am doing, even if it is just being me. Can "me" stand the test of "you?" Can my blogging stand the test of lousy comments if I were to allow comments? Or would the pressure to create constantly good writing cause me to shut down this blog if I got good feedback?
One might wonder what this has to do with being schizoaffective. It all sounds quite normally neurotic, doesn't it. But as my shrink said to me "you have a psychosis that masquerades as a neurosis." These struggles of meaning, isolation, loneliness and creative energy have deep and implacable tap roots, like beautiful water lilies on a pond that have roots down through the clouded, silty water down to the muddy bottom teeming with snapping turtles and underwater snakes (if they exist.) And that's the thing--my experience of these feelings are so extreme that they might not even exist and I am left to bushwhack my way through some fantastical underwater jungle. In the past year or so I have slowly given up trying sort through the roots, reeds, weeds, and dangerous reptiles and just tried to find a way to breath. Some would call this "keeping your head above water," a common phrase for an uncommon problem.
But I am a hybrid. Some part of the problem is uncommon--those underwater snakes. But they wrap themselves around what is often common--a wish to succeed, to have meaning, to love, to be connected--chocking these things and making them nearly impossible to achieve. (bad word if I'm thinking Buddhist.)
I must go now. My time is running up. More about this later.
winter saturday
2.13.10
How is it that the days that are going smoothly are the hardest in which to find something about which to write? I am used to mining the depths of pain and spewing it forth in deliciously vivid and visceral metaphors and calling it communication. And indeed it is; I am communicating my pain in a way that is most accurate, so (and this has been and remains the driving motivation of my life) some doctor, social worker, mental health worker, parent (in rare instances), of Buddhist monk may understand it and take it away.
But I'm finding there are all sorts of other kinds of communication which are vaguely, and in bits an pieces revealing themselves to me. Ones not based solely on the demand to be cured. Ones that are not handing over the self to have it be returned cleaned, pressed and hung, smelling vaguely like starch. Is this the life I want--wrinkle free by way of a chemical spray?
I'm not up for this today. Not up for a big exploratory piece. Not wanting to wrap up anything in that proverbial bow. And somehow I think you are not up to reading it either--that dry philosophizing and generalizing about relating to other. So I'll just tell you what I've done today, an insignificant winter Saturday.
Good god, that seems boring, too! A chore to write, a possible chore to read. I would rather be reading. I would rather be, dare I say, in conversation with people--friends, family, the owner of the flower shop down the street from whom I am going to buy tulips to give to R.,my housemate, who is giving his first concert in years tonight. I think it is classy and called for, to give flowers to the performer. When I was a young teenager I took part in summer theater in our hometown. Each summer was a different musical and we would audition and then chosen, would rehearse five nights a week and on week-ends for things like tech rehearsal as the performance dates drew near. Opening night there would be a table out front of the auditorium filled with bouquets for almost every cast member from parents, aunts and uncles, maybe even grandparents and friends. It was so exciting. We felt so special, so thrilled, so caught up in what felt like true theatrical professionalism. I loved it. So it only seems natural to buy flowers for R. and bring them along to the recital.
Of course nothing comes naturally to me. I've been worrying about the gesture a lot. Is it only a way to make the event about me? I don't really want to go, why am I professing a kindness I don't feel? I hate myself for ending up displaying affection, interest, intimacy that is false, an outright lie while others who don't want to go, just don't go. How do they manage that? If I don't go will R. retaliate with a mutual lack of support? I'm only going to be in with the in crowd. Hmmm. Now the in crowd isn't going. I don't dare drive, having never been to that city.
I announced in our house meeting that I won't be driving but like a trap door under the feet of the hanged, my conviction will open and I will fall through, directly into the driver's seat of my car, driving a crowd of house mates, heart pounding, head swimming, panic flooding my chest as I try to navigate my way to the venue.
And so on. Now, however, today, things are quite different. I am kind of excited to go. It will be lovely to hear an hour of beautiful piano music. And I mean really beautiful. This guy is good; it has been his life's work. I have secured a ride with M., even though I have to take on the role of navigator. I actually engineered that. I held back when anxiety wanted me to quell her and grab the certainty of a ride right away by asking S., but common sense knew he could not be counted upon. So the next day, at my clubhouse, I carefully asked M. if I could get a ride with him and looked up the directions on Mapquest as he asked. Then at dinner last night we discussed it with B., who M. also offered a ride to. R. is taking the T and I looked up the directions again, this time with the correct destination address. M. seemed to have a general idea of what they referred to but asked me to hold on to them and direct him as we drove. B. is worried about the time so we may leave earlier than 5:30 for the 7pm performance. M. assured me "we'll get there," and I responded openly and honestly and without forethought but with great warmth and cheeriness, "That's the confidence I don't have; that's why I'm not driving!"
Perhaps that is a glimpse of the communication I was talking about, honest and true, sometimes careful and planned, requiring assertivenss and revealing of personal idiosyncracies, a negotiation that develops over time into a solution. It was sprung from the depths (my terror of driving) but not vomited out onto everybody's lap as with a golden retriever who pukes up half a barrel of trash from the beach parking lot with an awful yakking and convulsing of body then looks up at you imploringly and without remorse, eager to forget the whole thing and be thrown the ball or fed dinner--to be loved.
Do I want to be loved like a dog, or loved like a person, a woman? A pet or a person? That seems to be the question lately and I seem to be the only one who has any potential for an answer. Beyond what I want, taking it out of the arena as a goal or expectation that I am in concrete control of filling or not filling, I will re-ask the question; can I be loved like a human? Then, probably most importantly can I love like a human?
Well, through all the trash in my head, I think I will go buy R. his tulips now. Step 1.
How is it that the days that are going smoothly are the hardest in which to find something about which to write? I am used to mining the depths of pain and spewing it forth in deliciously vivid and visceral metaphors and calling it communication. And indeed it is; I am communicating my pain in a way that is most accurate, so (and this has been and remains the driving motivation of my life) some doctor, social worker, mental health worker, parent (in rare instances), of Buddhist monk may understand it and take it away.
But I'm finding there are all sorts of other kinds of communication which are vaguely, and in bits an pieces revealing themselves to me. Ones not based solely on the demand to be cured. Ones that are not handing over the self to have it be returned cleaned, pressed and hung, smelling vaguely like starch. Is this the life I want--wrinkle free by way of a chemical spray?
I'm not up for this today. Not up for a big exploratory piece. Not wanting to wrap up anything in that proverbial bow. And somehow I think you are not up to reading it either--that dry philosophizing and generalizing about relating to other. So I'll just tell you what I've done today, an insignificant winter Saturday.
Good god, that seems boring, too! A chore to write, a possible chore to read. I would rather be reading. I would rather be, dare I say, in conversation with people--friends, family, the owner of the flower shop down the street from whom I am going to buy tulips to give to R.,my housemate, who is giving his first concert in years tonight. I think it is classy and called for, to give flowers to the performer. When I was a young teenager I took part in summer theater in our hometown. Each summer was a different musical and we would audition and then chosen, would rehearse five nights a week and on week-ends for things like tech rehearsal as the performance dates drew near. Opening night there would be a table out front of the auditorium filled with bouquets for almost every cast member from parents, aunts and uncles, maybe even grandparents and friends. It was so exciting. We felt so special, so thrilled, so caught up in what felt like true theatrical professionalism. I loved it. So it only seems natural to buy flowers for R. and bring them along to the recital.
Of course nothing comes naturally to me. I've been worrying about the gesture a lot. Is it only a way to make the event about me? I don't really want to go, why am I professing a kindness I don't feel? I hate myself for ending up displaying affection, interest, intimacy that is false, an outright lie while others who don't want to go, just don't go. How do they manage that? If I don't go will R. retaliate with a mutual lack of support? I'm only going to be in with the in crowd. Hmmm. Now the in crowd isn't going. I don't dare drive, having never been to that city.
I announced in our house meeting that I won't be driving but like a trap door under the feet of the hanged, my conviction will open and I will fall through, directly into the driver's seat of my car, driving a crowd of house mates, heart pounding, head swimming, panic flooding my chest as I try to navigate my way to the venue.
And so on. Now, however, today, things are quite different. I am kind of excited to go. It will be lovely to hear an hour of beautiful piano music. And I mean really beautiful. This guy is good; it has been his life's work. I have secured a ride with M., even though I have to take on the role of navigator. I actually engineered that. I held back when anxiety wanted me to quell her and grab the certainty of a ride right away by asking S., but common sense knew he could not be counted upon. So the next day, at my clubhouse, I carefully asked M. if I could get a ride with him and looked up the directions on Mapquest as he asked. Then at dinner last night we discussed it with B., who M. also offered a ride to. R. is taking the T and I looked up the directions again, this time with the correct destination address. M. seemed to have a general idea of what they referred to but asked me to hold on to them and direct him as we drove. B. is worried about the time so we may leave earlier than 5:30 for the 7pm performance. M. assured me "we'll get there," and I responded openly and honestly and without forethought but with great warmth and cheeriness, "That's the confidence I don't have; that's why I'm not driving!"
Perhaps that is a glimpse of the communication I was talking about, honest and true, sometimes careful and planned, requiring assertivenss and revealing of personal idiosyncracies, a negotiation that develops over time into a solution. It was sprung from the depths (my terror of driving) but not vomited out onto everybody's lap as with a golden retriever who pukes up half a barrel of trash from the beach parking lot with an awful yakking and convulsing of body then looks up at you imploringly and without remorse, eager to forget the whole thing and be thrown the ball or fed dinner--to be loved.
Do I want to be loved like a dog, or loved like a person, a woman? A pet or a person? That seems to be the question lately and I seem to be the only one who has any potential for an answer. Beyond what I want, taking it out of the arena as a goal or expectation that I am in concrete control of filling or not filling, I will re-ask the question; can I be loved like a human? Then, probably most importantly can I love like a human?
Well, through all the trash in my head, I think I will go buy R. his tulips now. Step 1.
No Name Politics
2.12.10
The "no name" was the name of restaurant in the North End of Boston my parents used to visit with other couples. I'm not quite sure if that was its real name or a pet name my parents had given it. They like to do that--draw on their feelings about a place, a person, or each other and affectionately baptize it or the other with a nickname. It's a little bit like that poetry technique of describing a part of something to capture the essence of the whole. The House of Pizza down the street from them has become the "5 Star," because the food is so good, the nickname dripping with irony because it is, after all, just a pizza joint manned by a salt of the earth waitress and owned by a huge Italian guy to whom my father calls himself "Rico." You bring your own wine. I think the whole thing captures the dichotomy of my family and the joy of my father--a common man done well, who has lived in the same town for his entire life, just moving out to the shore line and building himself a magnificent house. Growing up in this motion towards wealth with our souls still firmly planted in our Irish Catholic morals, values, ethics, and yes, sense of guilt, our family is unique to a lot or the people I've encountered who fall on either one side or the other quite squarely. And it REALLY makes it hard for me to know who to vote for. This quandary is deepened by my decades of travel through the mental health system.
You see, I've encountered more types of people than most anyone in my family but my father. When you are mentally ill suddenly all the mentally ill become your peers. You have that in common. You may not have wealth or financial hardship in common, you may not have ethnic background in common, you may not even have diagnosis in common, or IQ, or education but you have suffering, a very particular kind of invisible suffering, in common. Suddenly, sitting about the nurses station of an inpatient unit, killing time and holding on to a frozen orange to distract you from the storm in your head, you become friends with the other people sitting there doing the same. All other divisions just fall to the wayside and you can discover the most beautiful things about people that you would otherwise never have encountered in your life.
And it is in this environment that I've found many people like myself. People with family of means who live simply, on a tight budget either instituted by their family or by their own sense of pride, wanting to make it as much on their own as they can. Or maybe their families have disowned them.
Then there are people quite unlike me. People who are homeless or on the brink of being so . Then the other side--people whose families, steeped in "old" money, have financed exclusive private pay treatment for them. Either way, we're all living at the same halfway house in the end. Boundaries of means are washed away by illness and the struggle to recover.
I'm so glad I've met all these people. I'm so glad, that me, a societal mongrel, has carried on my father's tradition of being firmly planted in the salt of the earth. On the other hand I am so proud of him for making his dreams come true, for being unfettered by caps on his creativity and his outlandish capacity for hard work and building the life he wanted for him and his family. But it leaves me wondering, which side of the ballot do I mark? I really don't know.
I think that is all I will write today.
The "no name" was the name of restaurant in the North End of Boston my parents used to visit with other couples. I'm not quite sure if that was its real name or a pet name my parents had given it. They like to do that--draw on their feelings about a place, a person, or each other and affectionately baptize it or the other with a nickname. It's a little bit like that poetry technique of describing a part of something to capture the essence of the whole. The House of Pizza down the street from them has become the "5 Star," because the food is so good, the nickname dripping with irony because it is, after all, just a pizza joint manned by a salt of the earth waitress and owned by a huge Italian guy to whom my father calls himself "Rico." You bring your own wine. I think the whole thing captures the dichotomy of my family and the joy of my father--a common man done well, who has lived in the same town for his entire life, just moving out to the shore line and building himself a magnificent house. Growing up in this motion towards wealth with our souls still firmly planted in our Irish Catholic morals, values, ethics, and yes, sense of guilt, our family is unique to a lot or the people I've encountered who fall on either one side or the other quite squarely. And it REALLY makes it hard for me to know who to vote for. This quandary is deepened by my decades of travel through the mental health system.
You see, I've encountered more types of people than most anyone in my family but my father. When you are mentally ill suddenly all the mentally ill become your peers. You have that in common. You may not have wealth or financial hardship in common, you may not have ethnic background in common, you may not even have diagnosis in common, or IQ, or education but you have suffering, a very particular kind of invisible suffering, in common. Suddenly, sitting about the nurses station of an inpatient unit, killing time and holding on to a frozen orange to distract you from the storm in your head, you become friends with the other people sitting there doing the same. All other divisions just fall to the wayside and you can discover the most beautiful things about people that you would otherwise never have encountered in your life.
And it is in this environment that I've found many people like myself. People with family of means who live simply, on a tight budget either instituted by their family or by their own sense of pride, wanting to make it as much on their own as they can. Or maybe their families have disowned them.
Then there are people quite unlike me. People who are homeless or on the brink of being so . Then the other side--people whose families, steeped in "old" money, have financed exclusive private pay treatment for them. Either way, we're all living at the same halfway house in the end. Boundaries of means are washed away by illness and the struggle to recover.
I'm so glad I've met all these people. I'm so glad, that me, a societal mongrel, has carried on my father's tradition of being firmly planted in the salt of the earth. On the other hand I am so proud of him for making his dreams come true, for being unfettered by caps on his creativity and his outlandish capacity for hard work and building the life he wanted for him and his family. But it leaves me wondering, which side of the ballot do I mark? I really don't know.
I think that is all I will write today.
afternoon delight
2.11.10
Does anyone remember that song from the seventies? "ooooh, ooooh, afternoon delight!" It brings back bare feet on the newly laid asphalt of my parent's driveway. Summer afternoons spent alone--discounting my dog. Hanging around the slope and flat surface of grass that the house sits upon. Skinny legs but strong kneecaps. Shorts of a polyester cotton blend, if not all polyester. Perhaps throwing a slimy, mushy tennis ball down the hill to the dog. Perhaps riding my bike up and down the small incline of our driveway or up to the shared drive to the circular part at the top of the hill, hidden from view by a tunnel of rhododendrons three times as tall as me. Smelling the sweet ocean that lay down the driveway and around the bend of the street. Maybe searching for birds to capture or chasing chipmunks skittering in and out of the crevices of the stone drywall lining the main driveway. Lots of silence, except for the songs in my head. I liked it that way, except for the strange constraint I felt. A constraint that said it had to be that way; that I could not invite a friend over, that I could not knock on a neighbor's door--"Will you come and play with me?" Early on I had a sense that others could not handle me, as I've written before. That no one could understand me and trying to explain never occurred to me, as fraught with danger it seemed. After all, I didn't want to be misunderstood--the pain would be, is, too great. For misunderstanding came before advice that only, well, f'ed me up with its inaccuracy. Lonely. Lonely, I felt in this konundrum.
So thirty years later this is what I am talking about with M., my therapist, in his office this morning. We trace the whole path of thinking, feeling, history of having been institutionalized, of interpersonal patterns born self-preservation and paranoia
--all the factors that trace down to immutable isolation. "Help." I plaintively state partly to stave off the end of the session which I feel is drawing near and partly because I feel impossibility of the situation and want him to solve it. He makes it clear that he can't. What he, what we, come up with is far better than "three cognitive steps to healthy relationships!" or following Marsha Linenahann's (sp?) "DEAR MAN" acronym for interpersonal interactions. It takes a lot of back and forth, a lot of M. struggling to articulate himself in a way I'm not used to seeing with him and a lot of knitted brows and gaze raised to the ceiling on his part, which I watched with fear and waning confidence. Then I say "I wasn't talking about that kind of rat's nest [situtional] I was talking about an intrapsychic rat's nest" "Exactly, "he said. "What I am saying is that all your discomfort does not come from..." I join him in the last two words, "...my illness." Silence. Profound silene.
I turn my head to the left and down, couch my cheek in my left hand, elbow on the arm of the chair. When anyone has ever dared to say that to me in the past, even suggest it, I would refuse to listen and throw out any variety of behaviours from tears, to stonewalling, to angry tutorials on my illness through venoumously tight lips, to cutting, burning, running out of offices, outbreaks of fury--"What do you mean I don't have an illness!!??!!" ( as if that was what they were saying.) I felt gravely, grossly, and dangerously misundertood. I felt no one could help me. I felt alone. And mainly I felt accused of making up my pain and of pretending I couldn't make it go away. Of being underhanded and manipulative and dishonest and greedy for attention. I felt the gautlet down and pronounced guily of a terrible hate crime against myself and others. I felt demanded to fix what I knew I couldn't.
I had a lot of treatment in the eighties and nineties that seemed designed to make me feel this way and all I could do, powerlessly ensconced in the hospital or a residential program at the hospital and recieving the fashinable treatment of the time for the fashionable diagnosis of the time (Borderline Personality Disorder,) was too revolt with what was at hand--mainly what the treaters seemed to want--symptoms and behavior. My self-esteem, low as it was, took a dive and I became fully and wholeheartedly a patient for many years, a role I am slowly inching my way out of.
So when Mark and I chorused that "all my discomfort does not come from my illness, " I was surprised by my reaction: I smiled. Looking into the corner, cheek in hand, taking a moment to let it sink in and then the slightest rounding up of my bottom lip and tighening of the corners of my mouth, I felt relieved, and happy. Perhaps there is a human in me after all. It poses great threat, risk, and opportunity and must be coupled with this horrible disease that isn't going anyhwhere, but I am excited to explore the possiblities of looking at myself in a slightly different way.
Does anyone remember that song from the seventies? "ooooh, ooooh, afternoon delight!" It brings back bare feet on the newly laid asphalt of my parent's driveway. Summer afternoons spent alone--discounting my dog. Hanging around the slope and flat surface of grass that the house sits upon. Skinny legs but strong kneecaps. Shorts of a polyester cotton blend, if not all polyester. Perhaps throwing a slimy, mushy tennis ball down the hill to the dog. Perhaps riding my bike up and down the small incline of our driveway or up to the shared drive to the circular part at the top of the hill, hidden from view by a tunnel of rhododendrons three times as tall as me. Smelling the sweet ocean that lay down the driveway and around the bend of the street. Maybe searching for birds to capture or chasing chipmunks skittering in and out of the crevices of the stone drywall lining the main driveway. Lots of silence, except for the songs in my head. I liked it that way, except for the strange constraint I felt. A constraint that said it had to be that way; that I could not invite a friend over, that I could not knock on a neighbor's door--"Will you come and play with me?" Early on I had a sense that others could not handle me, as I've written before. That no one could understand me and trying to explain never occurred to me, as fraught with danger it seemed. After all, I didn't want to be misunderstood--the pain would be, is, too great. For misunderstanding came before advice that only, well, f'ed me up with its inaccuracy. Lonely. Lonely, I felt in this konundrum.
So thirty years later this is what I am talking about with M., my therapist, in his office this morning. We trace the whole path of thinking, feeling, history of having been institutionalized, of interpersonal patterns born self-preservation and paranoia
--all the factors that trace down to immutable isolation. "Help." I plaintively state partly to stave off the end of the session which I feel is drawing near and partly because I feel impossibility of the situation and want him to solve it. He makes it clear that he can't. What he, what we, come up with is far better than "three cognitive steps to healthy relationships!" or following Marsha Linenahann's (sp?) "DEAR MAN" acronym for interpersonal interactions. It takes a lot of back and forth, a lot of M. struggling to articulate himself in a way I'm not used to seeing with him and a lot of knitted brows and gaze raised to the ceiling on his part, which I watched with fear and waning confidence. Then I say "I wasn't talking about that kind of rat's nest [situtional] I was talking about an intrapsychic rat's nest" "Exactly, "he said. "What I am saying is that all your discomfort does not come from..." I join him in the last two words, "...my illness." Silence. Profound silene.
I turn my head to the left and down, couch my cheek in my left hand, elbow on the arm of the chair. When anyone has ever dared to say that to me in the past, even suggest it, I would refuse to listen and throw out any variety of behaviours from tears, to stonewalling, to angry tutorials on my illness through venoumously tight lips, to cutting, burning, running out of offices, outbreaks of fury--"What do you mean I don't have an illness!!??!!" ( as if that was what they were saying.) I felt gravely, grossly, and dangerously misundertood. I felt no one could help me. I felt alone. And mainly I felt accused of making up my pain and of pretending I couldn't make it go away. Of being underhanded and manipulative and dishonest and greedy for attention. I felt the gautlet down and pronounced guily of a terrible hate crime against myself and others. I felt demanded to fix what I knew I couldn't.
I had a lot of treatment in the eighties and nineties that seemed designed to make me feel this way and all I could do, powerlessly ensconced in the hospital or a residential program at the hospital and recieving the fashinable treatment of the time for the fashionable diagnosis of the time (Borderline Personality Disorder,) was too revolt with what was at hand--mainly what the treaters seemed to want--symptoms and behavior. My self-esteem, low as it was, took a dive and I became fully and wholeheartedly a patient for many years, a role I am slowly inching my way out of.
So when Mark and I chorused that "all my discomfort does not come from my illness, " I was surprised by my reaction: I smiled. Looking into the corner, cheek in hand, taking a moment to let it sink in and then the slightest rounding up of my bottom lip and tighening of the corners of my mouth, I felt relieved, and happy. Perhaps there is a human in me after all. It poses great threat, risk, and opportunity and must be coupled with this horrible disease that isn't going anyhwhere, but I am excited to explore the possiblities of looking at myself in a slightly different way.
Hmmm....
2.10.10
I have to say, I'm at a loss today--too much to write, too little passion or inspiration to write. Things, remarkably, are going fine. i got the news Monday afternoon that my father's polyp, found where he had cancer several years ago, was benign. At first I did the usual--gasp, smile, grin, laugh, exclaim "I knew it, I knew it!" (despite the fact that I well know--such things can't be known) to which my mother interjected "I did, too." They were "on their way out the door" to some sort of operatic outdoor concert at their gated community in FLA, so we couldn't talk for long. I did manage to get in there--"so when can I come down for a long week-end?" This was harbinger of things to come. Then, after hanging up, I did the requisite jumping up and down and telling anyone I could find suitable in the house to tell. "It's benign! It's benign!"
None of that did anything for me. Very little of those exclamations, proclamations, or turning figurative cartwheel in the living room seemed very accurate as to how I was feeling; I still felt like shit, but it had to be done, the excitement had to be expressed, if only as estimated interpersonal truth.
What did really happen was over the next several hours, the entire evening actually, as I watched t.v. and talked to Dr. M and took an extra anti-psychotic for my persistent symptoms, and ate dinner and walked to my meditation class and sat there and walked home, was that the relief slowly seeped in, like a cool maroon tide flooding a fecund marsh, feeding it, bringing the reeds and nesting birds back to life. The shroud of psychosis enveloping me populated with all those instant movies and paranoid fear, and the stinky, pungent smell of sickness, was lifted and I could breathe a bit better again. Left in my chest was the rock of despair, the insistent of suicidal rage but by morning that, too was gone. Note: none of this completely abandons me but believe you me, the air is much cleaner up here now.
Clearly the anxiety, the being on tinder hooks, waiting, waiting, waiting for this doctor to call with the biopsy results and waiting, waiting some more as he failed day after day to call in the time frame he said he would, ratcheted up my symptoms. Maybe this is a clue to my previous question: "where does disease end and human begin." Human stress, in this case, gave my illness a boot in the ass that shot it so far into the atmosphere on a wild arc of a ride that could only decline once the stress was removed. But then there was the other boot, this one shod on the foot of my family--we weren't allowed to talk about it. Hmmm...
It was hard, when I called my mother the first time, when I was sure the results to my dad's test were in, to hear her say to me breathlessly and urgently (almost violently) "Wendy, you've got to take a page from my book...you've just got to erase it, erase it from your head. " "But you know i don't work that way, mum. " (a daring response from me) "Well, you've got to try." (or something like that.) "But it doesn't always help, mum." "I know, I know, sometimes it comes around and bites you in the ass, but it is the only way..." And Then I heard the recipe for chicken caccitore at manic speed until she gave the phone to my dad and I heard about the palm rats in the attic in surreal detail. Then the phone call ended, me knowing I wouldn't be calling again soon.
I haven't written this stuff about my family in a long time and I can feel the sneaking snake of "my illness is not one at all but just emotional wreckage from living in a family where most stuff was "erased" I know this is not true. I know I have a bitch of an illness AND I know that it took years, my adult lifetime, for my parents to learn it can't be erased AND I think I know that most of this progress has been pushed onward by my learning--still in progress of course--to take care of myself. When I delivered my father's seventieth birthday cake to him amongst our entire family singing to him, he leaned a bit towards me, sparkling his eyes up at me and said softly "I never thought you'd make it here." At first I thought he meant to the house that day, then I understood. I can take care of myself. And when I call my mother without the strain of need in my voice, five times out of ten we have an enjoyable conversation and she ends with "I love you," which I return. She never used to say that Now, now that I can take care of my self, she is free to love me. There is space created in the cocoon that has bound us so tightly.
This freedom, this air to breathe and love, this space to enjoy comes out of decisions I have made. And to be fair, decisions my parents have made. When my first half-way house closed down, my instinct was to run home to my parents and live there until it was opened again. My mother's instinct was to get me an apartment ASAP. Instead, after crying, I breathed and made the best decision I've probably ever made. I agreed to go to another house in the system until they reopened the first one. I know living with my parents for a month or two rot would away any progress I was making in a beaker full of old patterns like following my parents around the house and long drawn out conversations with my mother about my emotional life and stuffed irritations and jealousy of my sister's life and fear of her children and resentment of her relationship with mum and dad, and so forth. Then, after finding the second house much better than the first, I, yes I and no one else, decided to stay and not go back to the first, newly staffed, house. It was the right decision by far and I made it on my own in the office with the director. I remember discussing it with my mother, telling her what I was deciding, getting her support, but clearly it was left up to me, and I felt confident about it.
Another decision I made, was to allow myself to see my parents aging and to change how I related to them. Especially, my mum. I started listening to her, and asking her questions as well as being a little more honest with her about myself--just the little things, like when she gasps and startles in the passenger seat of my car as I drive I've told her it is not helpful as she proposed but is harmful as it makes me a more nervous driver with her in the car. In the camera store, as we talk to the salesman I ask a question and she answers it. "Please let me ask questions, " I request and she snaps at me. I don't let it get into a fight. I listen to her about her bridge and golf and I look for common areas of interest. I mostly forgive her. I don't want to be mad at her, angry, furious, whatever. I don't want to blame her. If she is a tenth as anxious and fearful and paranoid as I am, I understand that she could not help me as a child deal with my own illness. What ensued that was a terrible tangling of our needs and obscuring of our boundaries and competition for my father's affection, and jealousy of each others success. What I'm left with in the end is this immutable belief that if I "get better" or if I am confident, talented, and take up space; if I lay stake to the veins, aortas, capillaries of my nature and my illness and treat myself and it with love and kindness, if I, in effect, take over her role--to save me--, as antiquated and impossible to fill as it is, she will die, as if we breathe from the same lungs and nourish ourselves from the same heart. My blossoming will kill her. I can only survive from her ashes. Guilt. Guilt. Unfathomable guilt is what I feel for growing up, because, after all, isn't that what I'm talking about, illness or no illness?
The odd thing is I know, too, that while all these wild beliefs and horrendous feelings about my mother whiz around in my head and chest and gut and taunt me with a deep sense of authenticity, I know they are not true. For am I not taking care of myself and is not my mother alive and well, and really, she's telling me she loves me. It is so damn hard for this stuff to take root!
Of course in the end, I am trading the fantasy of being instantly and dramatically saved forever by another for the reality something a previous therapist called my dad's love for me--"ordinary love." Is that enough when the devil is pouring oil on my body and my skin is peeling off and my mind is dank and burning all at the same time? Not not really. Then it is a case of surviving the unsurvivable and that is when my love, for myself, counts the most.
I have to say, I'm at a loss today--too much to write, too little passion or inspiration to write. Things, remarkably, are going fine. i got the news Monday afternoon that my father's polyp, found where he had cancer several years ago, was benign. At first I did the usual--gasp, smile, grin, laugh, exclaim "I knew it, I knew it!" (despite the fact that I well know--such things can't be known) to which my mother interjected "I did, too." They were "on their way out the door" to some sort of operatic outdoor concert at their gated community in FLA, so we couldn't talk for long. I did manage to get in there--"so when can I come down for a long week-end?" This was harbinger of things to come. Then, after hanging up, I did the requisite jumping up and down and telling anyone I could find suitable in the house to tell. "It's benign! It's benign!"
None of that did anything for me. Very little of those exclamations, proclamations, or turning figurative cartwheel in the living room seemed very accurate as to how I was feeling; I still felt like shit, but it had to be done, the excitement had to be expressed, if only as estimated interpersonal truth.
What did really happen was over the next several hours, the entire evening actually, as I watched t.v. and talked to Dr. M and took an extra anti-psychotic for my persistent symptoms, and ate dinner and walked to my meditation class and sat there and walked home, was that the relief slowly seeped in, like a cool maroon tide flooding a fecund marsh, feeding it, bringing the reeds and nesting birds back to life. The shroud of psychosis enveloping me populated with all those instant movies and paranoid fear, and the stinky, pungent smell of sickness, was lifted and I could breathe a bit better again. Left in my chest was the rock of despair, the insistent of suicidal rage but by morning that, too was gone. Note: none of this completely abandons me but believe you me, the air is much cleaner up here now.
Clearly the anxiety, the being on tinder hooks, waiting, waiting, waiting for this doctor to call with the biopsy results and waiting, waiting some more as he failed day after day to call in the time frame he said he would, ratcheted up my symptoms. Maybe this is a clue to my previous question: "where does disease end and human begin." Human stress, in this case, gave my illness a boot in the ass that shot it so far into the atmosphere on a wild arc of a ride that could only decline once the stress was removed. But then there was the other boot, this one shod on the foot of my family--we weren't allowed to talk about it. Hmmm...
It was hard, when I called my mother the first time, when I was sure the results to my dad's test were in, to hear her say to me breathlessly and urgently (almost violently) "Wendy, you've got to take a page from my book...you've just got to erase it, erase it from your head. " "But you know i don't work that way, mum. " (a daring response from me) "Well, you've got to try." (or something like that.) "But it doesn't always help, mum." "I know, I know, sometimes it comes around and bites you in the ass, but it is the only way..." And Then I heard the recipe for chicken caccitore at manic speed until she gave the phone to my dad and I heard about the palm rats in the attic in surreal detail. Then the phone call ended, me knowing I wouldn't be calling again soon.
I haven't written this stuff about my family in a long time and I can feel the sneaking snake of "my illness is not one at all but just emotional wreckage from living in a family where most stuff was "erased" I know this is not true. I know I have a bitch of an illness AND I know that it took years, my adult lifetime, for my parents to learn it can't be erased AND I think I know that most of this progress has been pushed onward by my learning--still in progress of course--to take care of myself. When I delivered my father's seventieth birthday cake to him amongst our entire family singing to him, he leaned a bit towards me, sparkling his eyes up at me and said softly "I never thought you'd make it here." At first I thought he meant to the house that day, then I understood. I can take care of myself. And when I call my mother without the strain of need in my voice, five times out of ten we have an enjoyable conversation and she ends with "I love you," which I return. She never used to say that Now, now that I can take care of my self, she is free to love me. There is space created in the cocoon that has bound us so tightly.
This freedom, this air to breathe and love, this space to enjoy comes out of decisions I have made. And to be fair, decisions my parents have made. When my first half-way house closed down, my instinct was to run home to my parents and live there until it was opened again. My mother's instinct was to get me an apartment ASAP. Instead, after crying, I breathed and made the best decision I've probably ever made. I agreed to go to another house in the system until they reopened the first one. I know living with my parents for a month or two rot would away any progress I was making in a beaker full of old patterns like following my parents around the house and long drawn out conversations with my mother about my emotional life and stuffed irritations and jealousy of my sister's life and fear of her children and resentment of her relationship with mum and dad, and so forth. Then, after finding the second house much better than the first, I, yes I and no one else, decided to stay and not go back to the first, newly staffed, house. It was the right decision by far and I made it on my own in the office with the director. I remember discussing it with my mother, telling her what I was deciding, getting her support, but clearly it was left up to me, and I felt confident about it.
Another decision I made, was to allow myself to see my parents aging and to change how I related to them. Especially, my mum. I started listening to her, and asking her questions as well as being a little more honest with her about myself--just the little things, like when she gasps and startles in the passenger seat of my car as I drive I've told her it is not helpful as she proposed but is harmful as it makes me a more nervous driver with her in the car. In the camera store, as we talk to the salesman I ask a question and she answers it. "Please let me ask questions, " I request and she snaps at me. I don't let it get into a fight. I listen to her about her bridge and golf and I look for common areas of interest. I mostly forgive her. I don't want to be mad at her, angry, furious, whatever. I don't want to blame her. If she is a tenth as anxious and fearful and paranoid as I am, I understand that she could not help me as a child deal with my own illness. What ensued that was a terrible tangling of our needs and obscuring of our boundaries and competition for my father's affection, and jealousy of each others success. What I'm left with in the end is this immutable belief that if I "get better" or if I am confident, talented, and take up space; if I lay stake to the veins, aortas, capillaries of my nature and my illness and treat myself and it with love and kindness, if I, in effect, take over her role--to save me--, as antiquated and impossible to fill as it is, she will die, as if we breathe from the same lungs and nourish ourselves from the same heart. My blossoming will kill her. I can only survive from her ashes. Guilt. Guilt. Unfathomable guilt is what I feel for growing up, because, after all, isn't that what I'm talking about, illness or no illness?
The odd thing is I know, too, that while all these wild beliefs and horrendous feelings about my mother whiz around in my head and chest and gut and taunt me with a deep sense of authenticity, I know they are not true. For am I not taking care of myself and is not my mother alive and well, and really, she's telling me she loves me. It is so damn hard for this stuff to take root!
Of course in the end, I am trading the fantasy of being instantly and dramatically saved forever by another for the reality something a previous therapist called my dad's love for me--"ordinary love." Is that enough when the devil is pouring oil on my body and my skin is peeling off and my mind is dank and burning all at the same time? Not not really. Then it is a case of surviving the unsurvivable and that is when my love, for myself, counts the most.
Good Morning Sunshine
This is how S. greets me in the morning. I manage to croak out "Good morning star shine," in response but it feels awkward, like the warmth of the greetings overestimates the warmth of my feelings for him. But I murmur it anyway, because I want that closeness, that warmth, that casual affection, even if I don't feel it. Can one chase after their dreams this way, by pretending they are already fact? Actually, I know the answer to that. No, it is not a good policy because all,at least all I end up doing is bearing down on myself mercilessly to fulfill some reality that doesn't exist.
I just got a call from the woman who is scheduling my Neuropsych. testing. It will be done with a man, a male doctor. It never occurred to me I will have a male doctor testing me. Somehow I want a woman, which is odd because both Dr. M, my psychiatrist, and MS, my therapist, are male. It's just that all the psych testing I've ever had was done by women. But if I didn't take that appointment, I wouldn't get one until March and I just want to get it done. (I just called and left a message for the scheduler, asking her could I keep the appointment and just switch doctors to a female doctor. If not I'll still keep the appointment.) The bottom line is I am nervous about the testing. It is hard. You have to define words, figure out spatial puzzles, figure out puzzles of things like hands and elephants. They are not only testing memory (my main complaint after 9 months of ECT) but they are also testing your ability to learn and, most dauntingly to me, your IQ.
I am an IQ snob. I have a high one, or at least I did, but I've always wanted it higher. It is my only proof that I am smart. My mother gets in on it,too, telling me she has the numbers filed away and my IQ is higher than my sister's who has a PhD. You see, I don't have a college degree. Not even near one. I have completed only three years of high school but racked up enough credits in those three years to graduate with a diploma from my prep school. I like to tell people "I did high school in three years, " but sometimes it is closer to the truth to say I dropped out of high school when I was seventeen, three weeks into my Senior year. I so badly want to be smart, to have an education, to excel.
In fact, I'm still furiously trying to find THE THING I will excel at. Will it be writing, art, photography, cooking the best meals at my halfway house, being the friendliest, the kindest, even if I'm hateful inside?
That's the thing about this illness. You have to make huge adjustments to what you value, to what you find meaningful. Shit, I would find a Harvard degree meaningful. I would find an MD helpful in that vein as well. I would find a published autobiography meaningful, but all I done got here is this little blog.
At our house meetings every week we go around the room and each person pays compliments to other residents. Such as, "Thanks for playing pool, that was really fun," or "congratulations on your new full time job," or "I've enjoyed our conversations together lately." As the months go by and the chemistry of the place changes and I have fallen farther and farther from the center I don't get as many compliments from people as I used to; I feel less included. But the one I get, more often than I get any others is "W. thank you for being you." No one else gets this. Or almost never.
I don't receive it as gracefully as I should. I kind of smile and roll my eyes at the same time and after the meeting adjourns I, teasingly but also seriously, wonder aloud, " I can't figure out if that is a compliment or a cop-out." And I really mean it. I can't figure it out. It is the crux of my crumbling sense of worth and the green shoots of grass and fiddlehead ferns growing at the base of the ruins. Am I really worth something inherently? Do I really have meaning in being? Am I really kind?
I feel so worthless and mean and hateful and meaningless most of the time, always struggling to meet what I wish was, demeaning myself inexorably. In meditation class it hit me last night, the big question: "Where does the diseased animal end and the human begin?" Scary not to know. Where do I hang my identity, like a woolen cap on a wooden peg, dripping from the snow--calm, solid, humble?
So, one thing I've always known is that I have a high IQ, that has been one solid touch point of who I am. I am afraid after all these years gone by--hospitalizations, ECT, medication galore, not reading much, watching stupid t.v. alot, just not thinking about anything but myself, not applying myself to any mental tasks, not learning anything new--that now I don't have that either--a high IQ I can call my own and derive the slightest sliver of identity, if not meaning, from.
You know, so much of this as I read it sounds like pure bunk. Rising from the distortions or my illness there is an other plane, smoky and ethereal. A hint of an other way to look at the cities of ashes below. Gray buildings with spires and domes and all sorts of dark gothic turrets and such; building that I live in most of the time. But meaning arises from this city of dark and doomed ash city.
I wish I could hang on to this separation long enough to write about it, but it is fleeting. So very fleeting, but it leaves a hint, a tiny doubt, a clue, that it perhaps I am something different than just "naught."
I wrote once, in a poem: "Sometimes I get a little bit confused/as to what is fantasy and what are truths/ And I have a fear that someday/ that I'll never find my way/ And I'll fall right through a seismic fault/And all I'll ever be is naught.
I just got a call from the woman who is scheduling my Neuropsych. testing. It will be done with a man, a male doctor. It never occurred to me I will have a male doctor testing me. Somehow I want a woman, which is odd because both Dr. M, my psychiatrist, and MS, my therapist, are male. It's just that all the psych testing I've ever had was done by women. But if I didn't take that appointment, I wouldn't get one until March and I just want to get it done. (I just called and left a message for the scheduler, asking her could I keep the appointment and just switch doctors to a female doctor. If not I'll still keep the appointment.) The bottom line is I am nervous about the testing. It is hard. You have to define words, figure out spatial puzzles, figure out puzzles of things like hands and elephants. They are not only testing memory (my main complaint after 9 months of ECT) but they are also testing your ability to learn and, most dauntingly to me, your IQ.
I am an IQ snob. I have a high one, or at least I did, but I've always wanted it higher. It is my only proof that I am smart. My mother gets in on it,too, telling me she has the numbers filed away and my IQ is higher than my sister's who has a PhD. You see, I don't have a college degree. Not even near one. I have completed only three years of high school but racked up enough credits in those three years to graduate with a diploma from my prep school. I like to tell people "I did high school in three years, " but sometimes it is closer to the truth to say I dropped out of high school when I was seventeen, three weeks into my Senior year. I so badly want to be smart, to have an education, to excel.
In fact, I'm still furiously trying to find THE THING I will excel at. Will it be writing, art, photography, cooking the best meals at my halfway house, being the friendliest, the kindest, even if I'm hateful inside?
That's the thing about this illness. You have to make huge adjustments to what you value, to what you find meaningful. Shit, I would find a Harvard degree meaningful. I would find an MD helpful in that vein as well. I would find a published autobiography meaningful, but all I done got here is this little blog.
At our house meetings every week we go around the room and each person pays compliments to other residents. Such as, "Thanks for playing pool, that was really fun," or "congratulations on your new full time job," or "I've enjoyed our conversations together lately." As the months go by and the chemistry of the place changes and I have fallen farther and farther from the center I don't get as many compliments from people as I used to; I feel less included. But the one I get, more often than I get any others is "W. thank you for being you." No one else gets this. Or almost never.
I don't receive it as gracefully as I should. I kind of smile and roll my eyes at the same time and after the meeting adjourns I, teasingly but also seriously, wonder aloud, " I can't figure out if that is a compliment or a cop-out." And I really mean it. I can't figure it out. It is the crux of my crumbling sense of worth and the green shoots of grass and fiddlehead ferns growing at the base of the ruins. Am I really worth something inherently? Do I really have meaning in being? Am I really kind?
I feel so worthless and mean and hateful and meaningless most of the time, always struggling to meet what I wish was, demeaning myself inexorably. In meditation class it hit me last night, the big question: "Where does the diseased animal end and the human begin?" Scary not to know. Where do I hang my identity, like a woolen cap on a wooden peg, dripping from the snow--calm, solid, humble?
So, one thing I've always known is that I have a high IQ, that has been one solid touch point of who I am. I am afraid after all these years gone by--hospitalizations, ECT, medication galore, not reading much, watching stupid t.v. alot, just not thinking about anything but myself, not applying myself to any mental tasks, not learning anything new--that now I don't have that either--a high IQ I can call my own and derive the slightest sliver of identity, if not meaning, from.
You know, so much of this as I read it sounds like pure bunk. Rising from the distortions or my illness there is an other plane, smoky and ethereal. A hint of an other way to look at the cities of ashes below. Gray buildings with spires and domes and all sorts of dark gothic turrets and such; building that I live in most of the time. But meaning arises from this city of dark and doomed ash city.
I wish I could hang on to this separation long enough to write about it, but it is fleeting. So very fleeting, but it leaves a hint, a tiny doubt, a clue, that it perhaps I am something different than just "naught."
I wrote once, in a poem: "Sometimes I get a little bit confused/as to what is fantasy and what are truths/ And I have a fear that someday/ that I'll never find my way/ And I'll fall right through a seismic fault/And all I'll ever be is naught.
A morning in the life
What do my readers need to know about "living schizoaffective" today? Or more to the point, what can I tell you all? I don't want to prove some hopeful, meditative, logical point true, all tied up with a red ribbon edged in gold. On the other hand, it may be harmful for me to try to bring you all into the wildly out of control gears and disks and pins (like the inner workings of an old fashioned watch) that reside in my head and color my emotions, my relationships, my ability to work (none), play (very little), think clearly (with great will power and determination.)
The rage is back. Like on Saturday I was ruefully tempted this morning not to take my meds. Revolt! Revolt! Against what, I'm not quite sure, but I was so tempted to call my kind doctor and cry to him, "I can't stand it! I can't stand it anymore!" What can't I stand? The videos that play in my head nearly all the time as judge, jury and trial of my slightest error? Just like in "Law and Order" I am questioned by the police for jaywalking. Or I am banned from Dunkin' Donuts on my morning walkd because, after using their bathroom I buy only a banana and don't have two pennies to make up the $1.02 cost. They say it's ok but I know they are looking at me funny and I know they think I am homeless and won't let me back in. Or worse, can I not stand all the self-recrimination, the constant assault on myself from every twist of my mind? I pass a mother yelling at her child to hold her hand as they cross the street and my attention alights on the fact that I have never had and never will have a baby and that that is a good thing because I would be a horrible, mean, dangerous mother unable to prevent myself from taking out the pain and rage of my illness on my unsuspecting child. Gauntlet down; I am guilty. Of course, my mind doesn't let me know until now that I am a good aunt, a gentle, warm, interested presence in my nephews' and niece's lives. That fact just won't take root.
How much longer can stand this twisted assault on myself? And the great pain and shame and sacrilege of writing yesterday that I want no friends? (Mother's face again, swollen from her Prednazone, looms above me.) I want so badly to go back and redeem myself from that entry. How much longer can I take the sensation that my body parts are being pulled in different direction like the hard pink taffy I used to buy at the penny candy store in my hometown? There are tears behind my eyes; searing pain is mounting in my muscles--How much more can I stand??!!
So I slipped, earlier this morning into the next phase--"Maybe it is time. Maybe it is time." I wonder if it is time to say good-bye, to end my life. I've gotten to this point many times before and will not act on it, but it is a seductive place to let my mind fall into. An answer, a decision, a finality, a cure (of sorts.)
I don't disclose this to anyone at the house. I sit at breakfast with a fellow resident and try, in all my heightened anxiety caused merely by his presence, to make the right kind of conversation-casual, relaxed, nonchalant, cool--and slam myself for the things I say that make me sound like a nervous old biddy. I embarrass myself; I know he thinks I don't count, am not worth much in the social circle in the house.
I don't talk to staff. She is useless to me. Telling her, a new addition to the house and the field, would only confuse the situation. Human contact is out. No one can handle me. I would get more enraged at her ineptitude rather than be open to what, if not much, she may be able to offer me. In all truth, I don't think many people can handle me. No one can help me. No one can take it away. No one can take it away.
And I guess that is the bottom line. I don't want help. I want a cure. I WANT A CURE!!! Not taking my meds, flirting with suicide, whatever, are only ways of letting out a little steam in an impossible situation. I am cramped inside a box that is far too small for me and can't get out, I'll never get out.
Ironically, I am starting a new meditation class focused on the Four Noble Truths which address suffering. And I know what they want me to say, that I want a different relationship with my suffering, and on my better days I want this, too. But after a week of stepped up psychosis and guilt and self-flagellation, and loneliness, and so forth, I want a cure, goddamn it.
But what at last happened this morning is that once all my preparations for the day were complete I sat on the living room couch with K. and S. and sipped my decaf and read a few pages of my book and slowly the urgency for the impossible slipped away and I was in the present again. The present only being, there is no fix.
This visceral knowledge will not last. I will fight this all day, this anger, this wish for some action to happen to relieve me, this urge to revolt, to not take my meds, to take too many. It will fill my mind and put great pressure on the inside of my skull, aching to be put into action. ButI will steel my will and clench my teeth, and maybe call my doctor if it unbearable, and it will pass. Maybe I will need the hospital, maybe not. Ultimately I will go through it alone. I will smile and appear kind while inside I raking any usefulness or value everyone has over coals in my head; I cannot love if I don't love myself.
My question I'll leave myself with is can my suffering ever turn me into a kinder person? Can I not use my suffering to love? Myself? Others? Even when intrinsic to my symptoms is guilt and self-hatred? Help me god, help me love. Help me not be alone and a let me be unencumbered enough to help others.
The rage is back. Like on Saturday I was ruefully tempted this morning not to take my meds. Revolt! Revolt! Against what, I'm not quite sure, but I was so tempted to call my kind doctor and cry to him, "I can't stand it! I can't stand it anymore!" What can't I stand? The videos that play in my head nearly all the time as judge, jury and trial of my slightest error? Just like in "Law and Order" I am questioned by the police for jaywalking. Or I am banned from Dunkin' Donuts on my morning walkd because, after using their bathroom I buy only a banana and don't have two pennies to make up the $1.02 cost. They say it's ok but I know they are looking at me funny and I know they think I am homeless and won't let me back in. Or worse, can I not stand all the self-recrimination, the constant assault on myself from every twist of my mind? I pass a mother yelling at her child to hold her hand as they cross the street and my attention alights on the fact that I have never had and never will have a baby and that that is a good thing because I would be a horrible, mean, dangerous mother unable to prevent myself from taking out the pain and rage of my illness on my unsuspecting child. Gauntlet down; I am guilty. Of course, my mind doesn't let me know until now that I am a good aunt, a gentle, warm, interested presence in my nephews' and niece's lives. That fact just won't take root.
How much longer can stand this twisted assault on myself? And the great pain and shame and sacrilege of writing yesterday that I want no friends? (Mother's face again, swollen from her Prednazone, looms above me.) I want so badly to go back and redeem myself from that entry. How much longer can I take the sensation that my body parts are being pulled in different direction like the hard pink taffy I used to buy at the penny candy store in my hometown? There are tears behind my eyes; searing pain is mounting in my muscles--How much more can I stand??!!
So I slipped, earlier this morning into the next phase--"Maybe it is time. Maybe it is time." I wonder if it is time to say good-bye, to end my life. I've gotten to this point many times before and will not act on it, but it is a seductive place to let my mind fall into. An answer, a decision, a finality, a cure (of sorts.)
I don't disclose this to anyone at the house. I sit at breakfast with a fellow resident and try, in all my heightened anxiety caused merely by his presence, to make the right kind of conversation-casual, relaxed, nonchalant, cool--and slam myself for the things I say that make me sound like a nervous old biddy. I embarrass myself; I know he thinks I don't count, am not worth much in the social circle in the house.
I don't talk to staff. She is useless to me. Telling her, a new addition to the house and the field, would only confuse the situation. Human contact is out. No one can handle me. I would get more enraged at her ineptitude rather than be open to what, if not much, she may be able to offer me. In all truth, I don't think many people can handle me. No one can help me. No one can take it away. No one can take it away.
And I guess that is the bottom line. I don't want help. I want a cure. I WANT A CURE!!! Not taking my meds, flirting with suicide, whatever, are only ways of letting out a little steam in an impossible situation. I am cramped inside a box that is far too small for me and can't get out, I'll never get out.
Ironically, I am starting a new meditation class focused on the Four Noble Truths which address suffering. And I know what they want me to say, that I want a different relationship with my suffering, and on my better days I want this, too. But after a week of stepped up psychosis and guilt and self-flagellation, and loneliness, and so forth, I want a cure, goddamn it.
But what at last happened this morning is that once all my preparations for the day were complete I sat on the living room couch with K. and S. and sipped my decaf and read a few pages of my book and slowly the urgency for the impossible slipped away and I was in the present again. The present only being, there is no fix.
This visceral knowledge will not last. I will fight this all day, this anger, this wish for some action to happen to relieve me, this urge to revolt, to not take my meds, to take too many. It will fill my mind and put great pressure on the inside of my skull, aching to be put into action. ButI will steel my will and clench my teeth, and maybe call my doctor if it unbearable, and it will pass. Maybe I will need the hospital, maybe not. Ultimately I will go through it alone. I will smile and appear kind while inside I raking any usefulness or value everyone has over coals in my head; I cannot love if I don't love myself.
My question I'll leave myself with is can my suffering ever turn me into a kinder person? Can I not use my suffering to love? Myself? Others? Even when intrinsic to my symptoms is guilt and self-hatred? Help me god, help me love. Help me not be alone and a let me be unencumbered enough to help others.
friendless
I'm fearful. I am in the computer lab of the library where the computers are lined up in rows of tables as opposed to the room I usually use where the computers are set into compartments of kiosks, so you are shut off from your neighbors by built in pine partitions. No one can see your screen there but I had to change seats here to try to quell my fear that the people at the tables behind me would look at the title of this blog and remember it and go to it and recognize my life somehow and suddenly everyone in my life will know what I am writing and undefined terrible things will happen. My housemates will file a human rights complaint against me, my mother will disown me, people will in general yell and scream at and abandon me. I'm not sure quite what yet, but I can see, really see in my minds eye against all my free will not to, these things happening. The quivering terror in my chest and my paranoia are heightened even more as I sense someone take a seat at a computer behind me to my right. I glance back, he has a perfect view. I think I should have taken an extra dose of my Olanzapine, a common atypical antipsychotic, before I left, not that it would do much good other than get me a little sleepy, which I don't want, in the middle of the day. Now there is a man beside me so I tilt my screen to the left; no, that will just give the guy behind me a better view so I tilt it back, almost back to its original position. I can't make up my mind so I make a half-assed decision and now the screen is sort of tilted. Now the guy next to me is typing; typing, typing, typing, typing...each keystroke jangling my brain like a set of old-fashioned brass skeleton keys on a ring shaking around first on his keyboard, then down my ear canal finally into my brain. I just want him to stop. He does. But there is coughing and voices farther away and more tapping of computer keys in the distant.
I wanted to write about my pain today. Ugh. That sounds narcissistic. Well, I'll 'fess up--I am narcissistic, hence this blog. All about me, me, me. Hmmm... I don't know how to qualify that, or if I should even try. I won't.
I wanted to write about not wanting any friends, what that really means, and how badly I want to page my doctor for a "check-in," but I am simply not up for trying to teach cyberspace about how hard it is for me to have friends and how that is not my fault but the effect of my illness. Proving the latter would be hard for me, because I do not entirely believe it. Moreover, I feel guilty for being interpersonally challenged and accepting it. I instantly see my mother's face espousing the importance of friends; she for whom her friends mean everything to her.
As well as guilty, I feel terrified that I am sinking into a state of not calling people back, not making plans, not writing e-mails, not sending notes back to people. It really feels, viscerally, like sinking and is accompanied by a vision, blood red and black of me descending into a pit of darkness. I am all alone. And I am letting it happen.
I am so scared that after living for three years at a halfway house where human contact is a given, without the demand to make intimate relationships with anyone there and spending a good portion of my week at a club house where I can have more human contact without needing to befriend anyone there either, I am turning into a social sloth. That not handicap but laziness and lack of foresight into and preparation for the future is driving this descent into irretrievable isolation.
Oddly enough, I also feel a little bit heady about this admission. Relieved? Connected to myself and what is true about myself? Identifiable to self?
Finally, there is that sneaky wish that if I let myself swim around in my isolation, in my lack of motivation to risk anything in friendship, if I add on to my identity--"loner"--then maybe, just maybe, this self-acceptance may someday be the fertile ground for starting a relationship. One is easier started on the solid ground of self-acceptance than on an eternal sprint away from who I am, is it not?
I always have that sneaky wish. If I accept some suffering aspect or undesirable aspect of myself, will it not then go away? What are my chances? I find this possibility scary, but that is for another time.
What do I tell you about why I don't want any friends? No, I desperately want friends, but it is exactly as Dr. M. put it somewhat sadly one day: it unfortunately not a question of helping me find relationships that are intimate and friendly and warm and close and enjoyable, but more a goal of me having some time with friends that feels doable and somewhat safe. Like a movie with a friend once in a while.
You might say, "What a terrible doctor, no hope for his patient," and in writing your script maybe I am thinking that a bit, but consider this:
My best friend and I plan a day together. It is in the middle of the week which I know will be hard for me but I quietly suggested we didn't have enough time to meet on the prior Sunday. I am often wracked with guilt re: this friend. I think she is mad at me for moving to the city, to this halfway house so far from her that she is too scared to drive to. I then carry a pot of boiling anger in my gut in reaction to this snot green swath of guilt that overflows from time to time making me furious at her; she's the one with the packed schedule, she is the one who has no time for me. So with all this guilt, her anger at me, my anger at her, I give away my Wednesday, knowing it will be hard for me to socialize in the middle of the week; my mental and physical energy will be sapped.
And indeed it was. Wed. morning I finished my routine early and lay on the couch until it was time to leave. I knew it would be a terrible visit yet I couldn't cancel. I just couldn't. She would be hurt, mad, disappointed and mean to me on the phone. I would ruin her day. She would hold it against me. My father's calls filled my head "Queen Me, Wendy. Take care of Number One. Queen me." I exchanged a few sentences about it with a housemate. I dragged myself up to the director's room and asked for a sick day. I called my friend. "You are not going to like this, " I said, "but I have to cancel. I don't feel well..." And you know what she said? She told me "That's all right, curl up with a good book." All that anger, terror, hatred, guilt, fighting for myself, blackness, envisioning of fighting, friendlessness in my mind's eye, cataclysmic seeming consequences met with "curl up with a good book."
This is why it is so hard. I don't "hear" "curl up with a good book." It does not rest with me. It does not find a home in my chest, my heart, my lungs, my soul, my pink flesh and grow. It is gone the minute it is said. It does not grow in me. I worried for days about how our friendship had ended and left apologetic, frightened messages on her machine to which she responded kindly and lovingly. I know I will forget this next time I have to cancel, or pick the movie, or the restaurant, or feel not quite up to listening to her. All the goodness drains a way with great velocity, like pulling the stopper from a tub full of water. "Woosh, chug, chug,chug, chug" reality of love goes violently down the drain replaced by a ring of sooty soil.
This is why I don't want friends. It's just too damn scary. But as you may have noticed, as did I while writing this, I really do want friends. And that, empirically, my actions replicate friendship and its inherent negotiations. Or even more than replicate--maybe I do keep up friendships, in my own, albeit strangled way. I just hurts so bad and brings me to such fantastical delusions that I can't seem to keep up much of a social calendar or bastion of friends. It's such a lonely pickle for which I blame myself. But also as I write, I know it is not my fault, leaving me in effect free to be friendless. Oddly enough that freedom feels good. Really good.
I'll leave it at that, without giving into my usual bent of tying it all up with a bow.
I wanted to write about my pain today. Ugh. That sounds narcissistic. Well, I'll 'fess up--I am narcissistic, hence this blog. All about me, me, me. Hmmm... I don't know how to qualify that, or if I should even try. I won't.
I wanted to write about not wanting any friends, what that really means, and how badly I want to page my doctor for a "check-in," but I am simply not up for trying to teach cyberspace about how hard it is for me to have friends and how that is not my fault but the effect of my illness. Proving the latter would be hard for me, because I do not entirely believe it. Moreover, I feel guilty for being interpersonally challenged and accepting it. I instantly see my mother's face espousing the importance of friends; she for whom her friends mean everything to her.
As well as guilty, I feel terrified that I am sinking into a state of not calling people back, not making plans, not writing e-mails, not sending notes back to people. It really feels, viscerally, like sinking and is accompanied by a vision, blood red and black of me descending into a pit of darkness. I am all alone. And I am letting it happen.
I am so scared that after living for three years at a halfway house where human contact is a given, without the demand to make intimate relationships with anyone there and spending a good portion of my week at a club house where I can have more human contact without needing to befriend anyone there either, I am turning into a social sloth. That not handicap but laziness and lack of foresight into and preparation for the future is driving this descent into irretrievable isolation.
Oddly enough, I also feel a little bit heady about this admission. Relieved? Connected to myself and what is true about myself? Identifiable to self?
Finally, there is that sneaky wish that if I let myself swim around in my isolation, in my lack of motivation to risk anything in friendship, if I add on to my identity--"loner"--then maybe, just maybe, this self-acceptance may someday be the fertile ground for starting a relationship. One is easier started on the solid ground of self-acceptance than on an eternal sprint away from who I am, is it not?
I always have that sneaky wish. If I accept some suffering aspect or undesirable aspect of myself, will it not then go away? What are my chances? I find this possibility scary, but that is for another time.
What do I tell you about why I don't want any friends? No, I desperately want friends, but it is exactly as Dr. M. put it somewhat sadly one day: it unfortunately not a question of helping me find relationships that are intimate and friendly and warm and close and enjoyable, but more a goal of me having some time with friends that feels doable and somewhat safe. Like a movie with a friend once in a while.
You might say, "What a terrible doctor, no hope for his patient," and in writing your script maybe I am thinking that a bit, but consider this:
My best friend and I plan a day together. It is in the middle of the week which I know will be hard for me but I quietly suggested we didn't have enough time to meet on the prior Sunday. I am often wracked with guilt re: this friend. I think she is mad at me for moving to the city, to this halfway house so far from her that she is too scared to drive to. I then carry a pot of boiling anger in my gut in reaction to this snot green swath of guilt that overflows from time to time making me furious at her; she's the one with the packed schedule, she is the one who has no time for me. So with all this guilt, her anger at me, my anger at her, I give away my Wednesday, knowing it will be hard for me to socialize in the middle of the week; my mental and physical energy will be sapped.
And indeed it was. Wed. morning I finished my routine early and lay on the couch until it was time to leave. I knew it would be a terrible visit yet I couldn't cancel. I just couldn't. She would be hurt, mad, disappointed and mean to me on the phone. I would ruin her day. She would hold it against me. My father's calls filled my head "Queen Me, Wendy. Take care of Number One. Queen me." I exchanged a few sentences about it with a housemate. I dragged myself up to the director's room and asked for a sick day. I called my friend. "You are not going to like this, " I said, "but I have to cancel. I don't feel well..." And you know what she said? She told me "That's all right, curl up with a good book." All that anger, terror, hatred, guilt, fighting for myself, blackness, envisioning of fighting, friendlessness in my mind's eye, cataclysmic seeming consequences met with "curl up with a good book."
This is why it is so hard. I don't "hear" "curl up with a good book." It does not rest with me. It does not find a home in my chest, my heart, my lungs, my soul, my pink flesh and grow. It is gone the minute it is said. It does not grow in me. I worried for days about how our friendship had ended and left apologetic, frightened messages on her machine to which she responded kindly and lovingly. I know I will forget this next time I have to cancel, or pick the movie, or the restaurant, or feel not quite up to listening to her. All the goodness drains a way with great velocity, like pulling the stopper from a tub full of water. "Woosh, chug, chug,chug, chug" reality of love goes violently down the drain replaced by a ring of sooty soil.
This is why I don't want friends. It's just too damn scary. But as you may have noticed, as did I while writing this, I really do want friends. And that, empirically, my actions replicate friendship and its inherent negotiations. Or even more than replicate--maybe I do keep up friendships, in my own, albeit strangled way. I just hurts so bad and brings me to such fantastical delusions that I can't seem to keep up much of a social calendar or bastion of friends. It's such a lonely pickle for which I blame myself. But also as I write, I know it is not my fault, leaving me in effect free to be friendless. Oddly enough that freedom feels good. Really good.
I'll leave it at that, without giving into my usual bent of tying it all up with a bow.
walk softly and...
...take your meds.
Sometimes that is all it boils down to, like today. Each strategy helps-- a little bit. Neither alone or together ends the suffering and each is a monumental challenge. Well, usually I have no problem taking my meds, despite having one of the most complicated med regimes I've encountered in anyone else. Every day I take over twenty pills. In the evenings before I go to bed I have to apply a cream to my abdomen and keep my shirt up until it sinks in (this can get cold when the winter wind is howling into our room.) Two days a week I have to change a small clear patch on to my lower abdomen (and yes, I have to put on the creme around this patch.) Both of these are delivering hormones gently to my system, as I have been in medical menopause for about ten years. I took this radical step because for years prior I would spend two and a half weeks out of a five week cycle curled up on bed in a psychotic suicidal rage. I lie. I curled up as much as I could but was pushed and pushed myself to plod my screeching body through paying bills, going to therapy, groups, volunteerships, social engagements and so forth. Many nights I spent in delirious despair on the phone to my psychiatrist. So now, every four weeks to the day, I get an injection that arrests the fluctuation of my hormones and receive a steady supply of hormones through my cream and patch. Again, it is a drop in the pot, this regimen, of things that help but do not cure.
Due to the menopause, once a week I take Actonel to fight against osteoporosis. This requires me to take it with a lot of water and then remain upright, with no food or drink, for half an hour. Now also on Mondays I take half of an extra thyroid medication, as my level was low in my last blood test ordered by my endocrinologist.
She's a whole other story. Two years ago, it was discovered, quite by miracle that I had thyroid cancer. Literally, a miracle. I was in the hospital--the psych hospital for upwards of my fiftieth visit in the last twenty-five years--and was having ECT (shock therapy). It is quiet a humane process now a days and the staff at the ECT clinic in the hospital were so kind to me. Some had known me forever and we would reminisce as the blood pressure cuff was inflating or the IV was going in. All of them would hold my hand while the IV went in as my veins go into hiding and the process was always difficult and painful and terrifying. Just as I drifted off--a terrifying feeling that in my depression reminded me only of death--anesthesiology nurse would say "We'll take good care of you."
One day, however I had some pain, albeit familiar, in the back of my neck. A little arthritis perhaps, or that I had slept wrong, and I casually mentioned it to the doctor who was visiting me at my bedside before I was treated. After a few minutes he came back and said they couldn't treat me without knowing what was going on with my neck. (God knows what happens to my body when I am under and the "juice" is applied!) I was so disappointed as the treatments were starting to help. Back I went to the unit. Nothing more was said about it. I guess I assumed my pain would clear up and by the next treatment day (they happened every other day) and they would take me.
Not quite. I was woken up the next day and told I was going to have an MRI on my neck. Later my slightly cynical mother would tell me that never would have happened if I didn't have the really good insurance that I have. Either way, I had the MRI, ordered by the kindly director of the ECT clinic whom had denied me treatment the day before. That's when they discovered the "nodule" on my thyroid. My neck was fine. Your teeth are fine, but your gums have to come out.
So from the MRI to my PCP's office in the internal medicine department of the psych hospital, to an ultrasound at the MGH building in a western suburb to a biopsy at Lahey clinic to a phone call from my new endocrinologist, "It's malignant." UGH
I've used up all my time--more tomorrow--must gO!
OOPs, My mistake, I have plenty of time left.
So without going too much into the cancer, you can see I have super complicated med regime. Somehow I managed my cancer, even though my parents were mostly in Florida. Even though my mother got mad that I scheduled my surgery during a gold tournament or something like that. I had couple of appointments that my goals person at my clubhouse brought me to and in the end my parents were there for my surgery, brought me home to their house, helped me with this super restrictive diet I had to go on for two weeks to prepare for a scan that would detect any more cancerous cells leftover and came and sat with me in my appointment with my doctor to hear that yes, there were a few renegade cells and radiation--in the form of a capsule--would be the best choice, but I would have to live in seclusion for a number of days after taking it. So back to my parents to live over the garage where we all took the restrictions perhaps a little too lightly.
I remember being mad and left alone that my parent didn't sit in the waiting room while I was in surgery. what if something had gone wrong and decisions had to be made? I remember being through with the radiation treatment and hugging my oldest nephew to assure him I was ok, even though he is too big for hugs from his auntie. I remember my best friend telling me how strong I had been through it and almost arguing with her,saying my inability to even let myself feel that I had cancer was a weakness, but now I see I had to do that to make every appointment, go through every procedure, write everything down, suffer the fear and uncertainty, and be in charge of it all, ultimately myself.
so now, while my second scan and first post surgery blood test were "fantastic!" (Quoting my doctor,) my second blood test showed a rise in values that I don't want rising, even though my ultrasound was fine. I didn't like this news and nearly had a fight with my friend over something else and was distraught for two weeks, unable to find a place to "put" this news. I decided i would call myself "in remission" which means it can or cannot come back and that I can hope for the best and live well. So now that I have "put" it somewhere in my head, not obliterated it's existence, but just found a place for it to rest, I can go on living my life. Remission, I've decided, is a good thing. It is, after all, better than cancer, is it not?!
So I guess I did go into my cancer. I tend to follow my trains of thoughts in long, winding, detailed paths. Dusty footpaths through densely green mountains, obscured often to anyone but me. I've had a couple of Rorsharch tests (inkblots) in my life and remember that I could go on forever about each one seeing endless shapes, figures and stories. A therapist I once had for 10 years told me that showed I had obsessive qualities. Whatever. If so, it really helps me keep my meds in order!
So today, though, I woke up in violent rebellion. I did not want to suffer. My brain in angry revolt. My body buzzing static-y pain. It's moments like these when my mind says if I do something radical then call my doctor he will do something to rectify the situation or my behavior or send me to the hospital and I will feel better. The latter three might be true and I might feel better for the moment but I will not escape the suffering. Better to tread softly, not wrestle my illness, and just take my meds. UGH. Where is there a better answer than that?
Sometimes that is all it boils down to, like today. Each strategy helps-- a little bit. Neither alone or together ends the suffering and each is a monumental challenge. Well, usually I have no problem taking my meds, despite having one of the most complicated med regimes I've encountered in anyone else. Every day I take over twenty pills. In the evenings before I go to bed I have to apply a cream to my abdomen and keep my shirt up until it sinks in (this can get cold when the winter wind is howling into our room.) Two days a week I have to change a small clear patch on to my lower abdomen (and yes, I have to put on the creme around this patch.) Both of these are delivering hormones gently to my system, as I have been in medical menopause for about ten years. I took this radical step because for years prior I would spend two and a half weeks out of a five week cycle curled up on bed in a psychotic suicidal rage. I lie. I curled up as much as I could but was pushed and pushed myself to plod my screeching body through paying bills, going to therapy, groups, volunteerships, social engagements and so forth. Many nights I spent in delirious despair on the phone to my psychiatrist. So now, every four weeks to the day, I get an injection that arrests the fluctuation of my hormones and receive a steady supply of hormones through my cream and patch. Again, it is a drop in the pot, this regimen, of things that help but do not cure.
Due to the menopause, once a week I take Actonel to fight against osteoporosis. This requires me to take it with a lot of water and then remain upright, with no food or drink, for half an hour. Now also on Mondays I take half of an extra thyroid medication, as my level was low in my last blood test ordered by my endocrinologist.
She's a whole other story. Two years ago, it was discovered, quite by miracle that I had thyroid cancer. Literally, a miracle. I was in the hospital--the psych hospital for upwards of my fiftieth visit in the last twenty-five years--and was having ECT (shock therapy). It is quiet a humane process now a days and the staff at the ECT clinic in the hospital were so kind to me. Some had known me forever and we would reminisce as the blood pressure cuff was inflating or the IV was going in. All of them would hold my hand while the IV went in as my veins go into hiding and the process was always difficult and painful and terrifying. Just as I drifted off--a terrifying feeling that in my depression reminded me only of death--anesthesiology nurse would say "We'll take good care of you."
One day, however I had some pain, albeit familiar, in the back of my neck. A little arthritis perhaps, or that I had slept wrong, and I casually mentioned it to the doctor who was visiting me at my bedside before I was treated. After a few minutes he came back and said they couldn't treat me without knowing what was going on with my neck. (God knows what happens to my body when I am under and the "juice" is applied!) I was so disappointed as the treatments were starting to help. Back I went to the unit. Nothing more was said about it. I guess I assumed my pain would clear up and by the next treatment day (they happened every other day) and they would take me.
Not quite. I was woken up the next day and told I was going to have an MRI on my neck. Later my slightly cynical mother would tell me that never would have happened if I didn't have the really good insurance that I have. Either way, I had the MRI, ordered by the kindly director of the ECT clinic whom had denied me treatment the day before. That's when they discovered the "nodule" on my thyroid. My neck was fine. Your teeth are fine, but your gums have to come out.
So from the MRI to my PCP's office in the internal medicine department of the psych hospital, to an ultrasound at the MGH building in a western suburb to a biopsy at Lahey clinic to a phone call from my new endocrinologist, "It's malignant." UGH
I've used up all my time--more tomorrow--must gO!
OOPs, My mistake, I have plenty of time left.
So without going too much into the cancer, you can see I have super complicated med regime. Somehow I managed my cancer, even though my parents were mostly in Florida. Even though my mother got mad that I scheduled my surgery during a gold tournament or something like that. I had couple of appointments that my goals person at my clubhouse brought me to and in the end my parents were there for my surgery, brought me home to their house, helped me with this super restrictive diet I had to go on for two weeks to prepare for a scan that would detect any more cancerous cells leftover and came and sat with me in my appointment with my doctor to hear that yes, there were a few renegade cells and radiation--in the form of a capsule--would be the best choice, but I would have to live in seclusion for a number of days after taking it. So back to my parents to live over the garage where we all took the restrictions perhaps a little too lightly.
I remember being mad and left alone that my parent didn't sit in the waiting room while I was in surgery. what if something had gone wrong and decisions had to be made? I remember being through with the radiation treatment and hugging my oldest nephew to assure him I was ok, even though he is too big for hugs from his auntie. I remember my best friend telling me how strong I had been through it and almost arguing with her,saying my inability to even let myself feel that I had cancer was a weakness, but now I see I had to do that to make every appointment, go through every procedure, write everything down, suffer the fear and uncertainty, and be in charge of it all, ultimately myself.
so now, while my second scan and first post surgery blood test were "fantastic!" (Quoting my doctor,) my second blood test showed a rise in values that I don't want rising, even though my ultrasound was fine. I didn't like this news and nearly had a fight with my friend over something else and was distraught for two weeks, unable to find a place to "put" this news. I decided i would call myself "in remission" which means it can or cannot come back and that I can hope for the best and live well. So now that I have "put" it somewhere in my head, not obliterated it's existence, but just found a place for it to rest, I can go on living my life. Remission, I've decided, is a good thing. It is, after all, better than cancer, is it not?!
So I guess I did go into my cancer. I tend to follow my trains of thoughts in long, winding, detailed paths. Dusty footpaths through densely green mountains, obscured often to anyone but me. I've had a couple of Rorsharch tests (inkblots) in my life and remember that I could go on forever about each one seeing endless shapes, figures and stories. A therapist I once had for 10 years told me that showed I had obsessive qualities. Whatever. If so, it really helps me keep my meds in order!
So today, though, I woke up in violent rebellion. I did not want to suffer. My brain in angry revolt. My body buzzing static-y pain. It's moments like these when my mind says if I do something radical then call my doctor he will do something to rectify the situation or my behavior or send me to the hospital and I will feel better. The latter three might be true and I might feel better for the moment but I will not escape the suffering. Better to tread softly, not wrestle my illness, and just take my meds. UGH. Where is there a better answer than that?
Good God, I don't know
Today has been one of those awful days, already I can say at 10 am. I often have awful mornings. Mornings like these when I wake up and for a moment or two feel clear and calm and smooth like melted milk chocolate in my chest. Then I am off and running. Is it my conversation with my roommate that gets me into trouble? We say nothing of import but do I resent her presence? Not want to hear her voice. Compete with her surreptitiously over who knows the staff the best? Who is more up on the happenings of the house? Do I wake up too fast, jumping out of bed into the bathroom, flinging on my walking clothes, collecting my keys, two dollars (in case I have to use the bathroom at Dunkin' Donuts which requires buying something,) my phone (in case I am hit by a car, attacked, raped, left for dead on some bricked side street,) and various warming devices--gloves, hat, scarf and jacket? Or is it peeking into the kitchen on my way downstairs to see if K. is home from the hospital and instead seeing B. grab the electric teapot off the gas stove as flames come out of the bottom? My instinct is to demean him. Instead I say nothing. And just retreat to the hallway and down the stairs and out the door.
I feel slightly collected as my walk begins, but the evil soon swallows me up. Over and over in my head I tell on B. I get him into trouble. I create a situation in which he is shamed, punished, humiliated. I am evil. I hate the hate in my chest. I cannot stop thinking these thoughts. I try to focus on anything but. I know I think of other things. I try to remember the Buddhist prayer I have taped to my mirror; I try to open my heart. I think of living alone where I wouldn't have to put up with people doing stupid things and ruining the teapot. I "tell" him he has to buy one to replace it. I wonder if he's put a note on it not to use. I wonder if he'll fess up. I wonder if I will have to put the note on it; will the responsibility fall into my lap? I hate this, I hate this, but I cannot stop. I am a horrible person. My other housemates aren't like this.
Perhaps it is the guilt. The pernicious guilt The overwhelming guilt. My body swamped, steeped, flooded in guilt that I don't really understand. I know I am full of guilty dread that my friend will not forgive me for canceling on her on Wednesday. I left her a "thank you so much for understanding" message last night, trying to draw forgiveness out of her, or more, to reestablish that we are friends. To me, canceling, has irrevocably broken our friendship. She hates me. She's angry at me. In terror I see that she has not called back last night or written me an e-mail. I am not safe in this world until we are friends again. And it is my fault. That story line is left hanging.
All this guilt makes me angry. Guilt for being annoyed at B. for melting our teapot turn poisoned anger. Guilt at failing my friend turns into anger at her. She resent my move to the city. She never drives in here. The list goes on. How dare these people make me so angry? It rocks my boat. I cannot handle this anger. It seems to call for retribution, if only to exorcise it from my body. I feel guilty for my anger. I feel angry for my guilt.
I, and you, I'm sure, can see this is going no where. Crap writing it is. A reflection of the snakes writhing about in my gut, chest, and brain. Nonsensical. Perhaps it is one of those days when my innards are best left alone. Sadly, this is true. There is no taming these snakes, no catching them, no forcing them to order.
So I meditate a little bit and then I just sit in the living room, in the corner of the couch which abuts the big desk and which catches the morning sun. I put my feet up on the table and just sit. A couple people are around. One of the guys asks me if I am hanging out at the local coffee shop today. I am surprised he would like my company. I feel I am nothing in the house; not "in with the in crowd" as the Momma's and the Poppa's used to sing. I am nervous when silence falls between us after some nervous babble on my part. I think, hey, he might like some silence to enjoy his coffee; he is often silent, it doesn't mean he doesn't like me.
Then I tell myself I can do this. I can hold these awful feelings--this nests of scaly snakes of blame, hate, guilt, anger, and terror--in kindness. I can hold them without messing with them, inciting them even more I can do it. I do it. Practically every day of my life. I tell myself they will pass. But mostly I focus on my strength and the novel intention of kindness to myself. I focus on my psychiatrist having told me I have confidence, I have power. I focus on my therapist telling me "You're doing it, " when I exclaimed to him yesterday "How can I manage this (my schedule, symptoms, responsibilities)?!"
And often, this ability, to live with this disease, makes me the guiltiest of all. Guilty for all those years when I said I couldn't. Behaved as if I couldn't. Misbehave to prove I couldn't. I am regretful. But I know all I was doing was trying to convince my parents mostly, then ill-informed treaters that something vast and deep and irrecovable was going on with me. That it was impossible for me to do what was being asked of me so I would just reject any expectation. It hasn't been until lately that my family, my treaters, and finally, a bit myself, have been able to work on the notion that while yes, something vast and deep and irrevocable goes on with me every day causing great and excruciating pain, barring me from so much in life, that there are some things I can do. And one of them is to just hold my pain.
I often notice I am most hateful when I am not feeding myself. It is a metaphor, this "feeding" word but ironically my mornings start to pull together a bit while I leaning over my bowl of oatmeal, with its glistening oats and plump wet raisins and dusty cinnamon mixed in, feeding myself. This, this moment is good and I give it to myself. Thus, I feel fed, and the barrage in my head slows down just a bit and I might be able to be kind to someone, feeling full of warm mushy goodness myself.
Congratulation to anyone who reads through this entry without coming up completely confused! Welcome to my world!
I feel slightly collected as my walk begins, but the evil soon swallows me up. Over and over in my head I tell on B. I get him into trouble. I create a situation in which he is shamed, punished, humiliated. I am evil. I hate the hate in my chest. I cannot stop thinking these thoughts. I try to focus on anything but. I know I think of other things. I try to remember the Buddhist prayer I have taped to my mirror; I try to open my heart. I think of living alone where I wouldn't have to put up with people doing stupid things and ruining the teapot. I "tell" him he has to buy one to replace it. I wonder if he's put a note on it not to use. I wonder if he'll fess up. I wonder if I will have to put the note on it; will the responsibility fall into my lap? I hate this, I hate this, but I cannot stop. I am a horrible person. My other housemates aren't like this.
Perhaps it is the guilt. The pernicious guilt The overwhelming guilt. My body swamped, steeped, flooded in guilt that I don't really understand. I know I am full of guilty dread that my friend will not forgive me for canceling on her on Wednesday. I left her a "thank you so much for understanding" message last night, trying to draw forgiveness out of her, or more, to reestablish that we are friends. To me, canceling, has irrevocably broken our friendship. She hates me. She's angry at me. In terror I see that she has not called back last night or written me an e-mail. I am not safe in this world until we are friends again. And it is my fault. That story line is left hanging.
All this guilt makes me angry. Guilt for being annoyed at B. for melting our teapot turn poisoned anger. Guilt at failing my friend turns into anger at her. She resent my move to the city. She never drives in here. The list goes on. How dare these people make me so angry? It rocks my boat. I cannot handle this anger. It seems to call for retribution, if only to exorcise it from my body. I feel guilty for my anger. I feel angry for my guilt.
I, and you, I'm sure, can see this is going no where. Crap writing it is. A reflection of the snakes writhing about in my gut, chest, and brain. Nonsensical. Perhaps it is one of those days when my innards are best left alone. Sadly, this is true. There is no taming these snakes, no catching them, no forcing them to order.
So I meditate a little bit and then I just sit in the living room, in the corner of the couch which abuts the big desk and which catches the morning sun. I put my feet up on the table and just sit. A couple people are around. One of the guys asks me if I am hanging out at the local coffee shop today. I am surprised he would like my company. I feel I am nothing in the house; not "in with the in crowd" as the Momma's and the Poppa's used to sing. I am nervous when silence falls between us after some nervous babble on my part. I think, hey, he might like some silence to enjoy his coffee; he is often silent, it doesn't mean he doesn't like me.
Then I tell myself I can do this. I can hold these awful feelings--this nests of scaly snakes of blame, hate, guilt, anger, and terror--in kindness. I can hold them without messing with them, inciting them even more I can do it. I do it. Practically every day of my life. I tell myself they will pass. But mostly I focus on my strength and the novel intention of kindness to myself. I focus on my psychiatrist having told me I have confidence, I have power. I focus on my therapist telling me "You're doing it, " when I exclaimed to him yesterday "How can I manage this (my schedule, symptoms, responsibilities)?!"
And often, this ability, to live with this disease, makes me the guiltiest of all. Guilty for all those years when I said I couldn't. Behaved as if I couldn't. Misbehave to prove I couldn't. I am regretful. But I know all I was doing was trying to convince my parents mostly, then ill-informed treaters that something vast and deep and irrecovable was going on with me. That it was impossible for me to do what was being asked of me so I would just reject any expectation. It hasn't been until lately that my family, my treaters, and finally, a bit myself, have been able to work on the notion that while yes, something vast and deep and irrevocable goes on with me every day causing great and excruciating pain, barring me from so much in life, that there are some things I can do. And one of them is to just hold my pain.
I often notice I am most hateful when I am not feeding myself. It is a metaphor, this "feeding" word but ironically my mornings start to pull together a bit while I leaning over my bowl of oatmeal, with its glistening oats and plump wet raisins and dusty cinnamon mixed in, feeding myself. This, this moment is good and I give it to myself. Thus, I feel fed, and the barrage in my head slows down just a bit and I might be able to be kind to someone, feeling full of warm mushy goodness myself.
Congratulation to anyone who reads through this entry without coming up completely confused! Welcome to my world!
All of the sudden
All of the sudden I am doing too much. Yesterday started at 6:30 am with a 45 minute walk through the heart of the city and down to the river, continued with meditation, shower, breakfast, a little respite in front of the news, off to the library to write then peruse the books for a while, then eat lunch in my car while it warmed up so I could drive to my once a week art class which I had little inspiration for. Escaping a group critique of my work I headed off for a half hour drive to my psychiatrist's office then back to my rented parking space near my half-way house, stopping at a coffee shop where I bumped into an old housemate and then walking in the bitter cold to a drop in meditation class for an hour then finally arriving back home at 7:30 pm. Once home I had a boisterous political conversation on the phone with my father, who is awaiting results on a biopsy they took over a week ago (my dad is in remission from colorectal cancer.) We have no results yet, hence the distraction of politics. I then had a dinner of cereal and yogurt at the kitchen table where there was loud game of "UNO" going on with cheating and alliances and all sorts of things happening with great glee and downright disgust, whether you were the cheater or the cheated. Then I left a message for my friend making plans to talk today to make plans to see eachother. She called back once I was already trying to sleep. I just could not settle down. I set my alarm for seven, thinking that not walking this morning would be enough of a respite to fuel me for a day with my friend walking in the tamed wilderness west of the city (i.e. conservation land or Audobon land or something like that.)
Impossible. With all my might, all my self-knowledge, all my courage, mustering all the things my friend, my mother, my father, my treaters have said to me I actually asked for the day off from our residence director (we are required to leave the house from 10am until 2pm each day unless sick) and called my friend and cancelled. It was terrifying, but L. was kind and told me to curl up with a good book. Instead I slept fitfully until 3pm, dreamng that I was stuck in fifities movie in which a group of women were serving cookies and lemonade in my parents house, complaing about and to their husbands for all the work and chidren that were getting dumped upon them. One women realized she was pregnant again and silently handed me a bag full of everything I needed to give her an at home abortion in my parent's old study. Silently I complied as all the mothers and children gathered at the bottom of the stairs to watch. The film stopped just as I was about to induce the abortion and my hope materialized into a potential end of the movie--the woman holding her baby happily at the bottom of the stairs.
What a dream. I woke up confused about its meaning and went downstairs to eat lunch and then took myself out for my weekly dose of ice cream. I then realized my dream was telling me I am doing too much. I am constantly looking for meaning and have just missed the target. I have a lot to do suddenly but still feel meaningless as it is all just stuff that circulates around me. Question--is that so bad. Don't most people arrange their lives, build their lives, around their wishes, wants, needs, and goals. Goals. Wishes. Hmmm. Wants. Needs are taken care of but how about the other stuff?
It's too much to settle here, but it is a window into the life of living with mental illness as well as a window from my perspective into a non-mentally ill life. Picking out priorities. Making hard decisions. Bowing to your limitations.
While a shower can take it out of me, or a chance conversation in the hallway with a housemate, I have to be very careful about how I spend my energy, but have to balance that with doing something for others. I just have to do something for a cause greater than myself. And not on an irregular basis. I've tried to volunteer at a woman's shelter serving lunch but it turned out to be just a tiny kitchen in an old house and demanded far too much interpersonal reaction with the streetwise woman who quickly took to calling me "dear" or "hon." I interviewd at MGH to be a flower delivery volunteer but the responsibility there was enormous--fire codes, security codes, infection controls--and the only available day was a Sunday afternoon, a time often chooses to celebrate birthdays and things or I am hunkering down for the week ahead or at a movie with a freind. Each of these times I disclosed and while I think that mattered little to the shelter I believe the man at MGH guided me away from them gently. Still, I'm finding disclosing is better than pretending (another subject)
The best volunteership for me has been at a local community supported agriculture (CSA) farm during the last two falls. They know I have an illness, as I was introduced to them by the vocational counselor and greenhouse director of my clubhouse, but that is not an issue. They are, however, sensitive to me in allowing me to do jobs I think I might be best at, giving me a little choice each day I am there. And they give 20% of their food to local charities. And it is a job that is manual and I can do it on my worst and my best days. And I love the outdoors and they are a great group of people. And I have skills in this area, as in my early twenties I spent three years living on a working organic farm for people with psych disorders.
So the farm starts accepting voluntneers in March. But man, I have a lot going on. I begin a meditation class on Monday nights next Monday. I have just started this blog and want to write every morning. I want to start volunteering in March. I want to continue to walk. I have my art group. I have therapy three times a week.. I have chores and cooking and meetings at my halfway house and an edict that I can't be home between 10 and 2. I have my clubhouse. I have recently started yoga again, once a week. I figured out how to organize my pictures on my computer from the camera I got from my mum. I have to manage all my very complex medication and my medical world (I have a PCP, a neuroendocrinologist to manage my hormoned which have a huge part effect on my illness, an endocrinologist who manages my thyroid cancer which is in remission, as well as my psychiatrist and psychologist.) I pay my bills, manage my finances (finally with the help of my sister,) and socialize a little bit, and manage living with 15 other people. I have just created a four page list of goals to research other living situations and have two to accomplish this week. Still, I feel like I am not doing enough. So what is the problem? What is the hole I am trying to fill?
I think I know. I think I am trying so hard to deny or obscure the effects of living with schizoaffective disorder. Sure, I'll admit to having it, but I won't live like I do. If I just do the right thing--meditate, think, the right way, make the right decisions--can't I live normally? Can't I manage it all? It's heartbreaking, but no, I can't. It just kills me.
I'm always asking "who am I?" and "What is my purpose?" But maybe those answers are not so hard to find. Maybe it is simply this whirlwind of expectations meant to obscure the truth that is hiding what is so evidently there. Maybe simply in being, I am.
Well, that is a show stopper. Sickens me a bit. But I know, I know, it is a realization that everyone must come to whether they are managing a running stream of psychotic thoughts or a household bursting with children (back to my dream.) When can I be enough for myself? I am enough for my family finally, my friends, treaters and a housemates. When can I be enough for myself?
Walking, meditating, writing, farming. Seems like a pretty decent life. Yoga could go. Art group could even go. The occasional therapy could go. Could my halfway house go? We'll see.
Enough,
Signing off.
Impossible. With all my might, all my self-knowledge, all my courage, mustering all the things my friend, my mother, my father, my treaters have said to me I actually asked for the day off from our residence director (we are required to leave the house from 10am until 2pm each day unless sick) and called my friend and cancelled. It was terrifying, but L. was kind and told me to curl up with a good book. Instead I slept fitfully until 3pm, dreamng that I was stuck in fifities movie in which a group of women were serving cookies and lemonade in my parents house, complaing about and to their husbands for all the work and chidren that were getting dumped upon them. One women realized she was pregnant again and silently handed me a bag full of everything I needed to give her an at home abortion in my parent's old study. Silently I complied as all the mothers and children gathered at the bottom of the stairs to watch. The film stopped just as I was about to induce the abortion and my hope materialized into a potential end of the movie--the woman holding her baby happily at the bottom of the stairs.
What a dream. I woke up confused about its meaning and went downstairs to eat lunch and then took myself out for my weekly dose of ice cream. I then realized my dream was telling me I am doing too much. I am constantly looking for meaning and have just missed the target. I have a lot to do suddenly but still feel meaningless as it is all just stuff that circulates around me. Question--is that so bad. Don't most people arrange their lives, build their lives, around their wishes, wants, needs, and goals. Goals. Wishes. Hmmm. Wants. Needs are taken care of but how about the other stuff?
It's too much to settle here, but it is a window into the life of living with mental illness as well as a window from my perspective into a non-mentally ill life. Picking out priorities. Making hard decisions. Bowing to your limitations.
While a shower can take it out of me, or a chance conversation in the hallway with a housemate, I have to be very careful about how I spend my energy, but have to balance that with doing something for others. I just have to do something for a cause greater than myself. And not on an irregular basis. I've tried to volunteer at a woman's shelter serving lunch but it turned out to be just a tiny kitchen in an old house and demanded far too much interpersonal reaction with the streetwise woman who quickly took to calling me "dear" or "hon." I interviewd at MGH to be a flower delivery volunteer but the responsibility there was enormous--fire codes, security codes, infection controls--and the only available day was a Sunday afternoon, a time often chooses to celebrate birthdays and things or I am hunkering down for the week ahead or at a movie with a freind. Each of these times I disclosed and while I think that mattered little to the shelter I believe the man at MGH guided me away from them gently. Still, I'm finding disclosing is better than pretending (another subject)
The best volunteership for me has been at a local community supported agriculture (CSA) farm during the last two falls. They know I have an illness, as I was introduced to them by the vocational counselor and greenhouse director of my clubhouse, but that is not an issue. They are, however, sensitive to me in allowing me to do jobs I think I might be best at, giving me a little choice each day I am there. And they give 20% of their food to local charities. And it is a job that is manual and I can do it on my worst and my best days. And I love the outdoors and they are a great group of people. And I have skills in this area, as in my early twenties I spent three years living on a working organic farm for people with psych disorders.
So the farm starts accepting voluntneers in March. But man, I have a lot going on. I begin a meditation class on Monday nights next Monday. I have just started this blog and want to write every morning. I want to start volunteering in March. I want to continue to walk. I have my art group. I have therapy three times a week.. I have chores and cooking and meetings at my halfway house and an edict that I can't be home between 10 and 2. I have my clubhouse. I have recently started yoga again, once a week. I figured out how to organize my pictures on my computer from the camera I got from my mum. I have to manage all my very complex medication and my medical world (I have a PCP, a neuroendocrinologist to manage my hormoned which have a huge part effect on my illness, an endocrinologist who manages my thyroid cancer which is in remission, as well as my psychiatrist and psychologist.) I pay my bills, manage my finances (finally with the help of my sister,) and socialize a little bit, and manage living with 15 other people. I have just created a four page list of goals to research other living situations and have two to accomplish this week. Still, I feel like I am not doing enough. So what is the problem? What is the hole I am trying to fill?
I think I know. I think I am trying so hard to deny or obscure the effects of living with schizoaffective disorder. Sure, I'll admit to having it, but I won't live like I do. If I just do the right thing--meditate, think, the right way, make the right decisions--can't I live normally? Can't I manage it all? It's heartbreaking, but no, I can't. It just kills me.
I'm always asking "who am I?" and "What is my purpose?" But maybe those answers are not so hard to find. Maybe it is simply this whirlwind of expectations meant to obscure the truth that is hiding what is so evidently there. Maybe simply in being, I am.
Well, that is a show stopper. Sickens me a bit. But I know, I know, it is a realization that everyone must come to whether they are managing a running stream of psychotic thoughts or a household bursting with children (back to my dream.) When can I be enough for myself? I am enough for my family finally, my friends, treaters and a housemates. When can I be enough for myself?
Walking, meditating, writing, farming. Seems like a pretty decent life. Yoga could go. Art group could even go. The occasional therapy could go. Could my halfway house go? We'll see.
Enough,
Signing off.
Make Up
"The seed of suffering in you may be strong, but don't wait until you have no more suffering before allowing yourself to be happy."
Tich Nhat Hanh
from The Heart of the Buddha's Teaching
This is what I aspire to but I'm always haranguing myself for falling short. My meditation, twice daily, is often a torture chamber in which I trail into my thoughts, away from my breath, away from feeling the moment I am in and castigate myself for it then castigate myself for castigating myself. I sink into the moment for a split second and my brain pops up with disturbing phrases that I do not understand, so I start to analyze that, then realize analysis has no place in meditation and take a good swipe at myself before I try to concentrate on my breath only to hear my inner voice tell myself I am not really concentrating on my breath, I am lacking or lazy or unwilling or recalcitrant or don't really want to get better. I simply cannot "quiet" my mind. It is in this manner that I take my morning walks, soap myself up in the shower, have an interaction with a housemate, drive my car, have a telephone conversation with a friend, pretty much from waking to sleeping.
But am I really falling short? Am I really not getting better? Am I really not following the wisdom of Tich Naht Hahn? Or my psychiatrist as well, a very wise and well adjusted man. Or is it as Hahn says--don't wait for the suffering stops to let in happiness. And is it how my psychiatrist says, that all I have just described to you is the nature of my illness--the guilt, the fear, the mental torture are symptoms that are out of my control.
As I wrote the first paragraph it was clear to me. That snake pit of self-abusive thought that I live in is indeed my illness. While writing it out it lifted off of me and I could feel, ever so gently, the space between me and it. And as far as the quotation at the top of the page, well, I surprised myself today--I put on make-up. Yup, you got it--mascara, blush and lo' and behold even lipstick! Well, just a little lipstick. Happiness, like the pre-Spring morning sun lighting up the garden fence outside my front door, chose a fleeting spot in me to alight upon.
What else? I really noticed this morning heading back to the house on my walk around 7:30 that the high school boys walk like they have a limp. This is their cool gangsta' walk I guess, but do they know they simply look injured? Just something I noticed.
I noticed the waning moon which brought back an ironic memory. I saw the sunrise over the river cast the pollution coming out of two smoke stack a pink glow on the underside of the steam, while the top remained a purple-y blue gray. I wondered how would one paint that.
I'm a little uncomfortable giving all this space to joy, curiosity, city inspired beauty. I'm so much more used to describing the gut wrenching pain in hopes that if I just say it right, if I just get someone to really understand, it will go away. I aspire to listen to both the chimes and the sirens, but it is going to take some practice. I hear they both exist.
Tich Nhat Hanh
from The Heart of the Buddha's Teaching
This is what I aspire to but I'm always haranguing myself for falling short. My meditation, twice daily, is often a torture chamber in which I trail into my thoughts, away from my breath, away from feeling the moment I am in and castigate myself for it then castigate myself for castigating myself. I sink into the moment for a split second and my brain pops up with disturbing phrases that I do not understand, so I start to analyze that, then realize analysis has no place in meditation and take a good swipe at myself before I try to concentrate on my breath only to hear my inner voice tell myself I am not really concentrating on my breath, I am lacking or lazy or unwilling or recalcitrant or don't really want to get better. I simply cannot "quiet" my mind. It is in this manner that I take my morning walks, soap myself up in the shower, have an interaction with a housemate, drive my car, have a telephone conversation with a friend, pretty much from waking to sleeping.
But am I really falling short? Am I really not getting better? Am I really not following the wisdom of Tich Naht Hahn? Or my psychiatrist as well, a very wise and well adjusted man. Or is it as Hahn says--don't wait for the suffering stops to let in happiness. And is it how my psychiatrist says, that all I have just described to you is the nature of my illness--the guilt, the fear, the mental torture are symptoms that are out of my control.
As I wrote the first paragraph it was clear to me. That snake pit of self-abusive thought that I live in is indeed my illness. While writing it out it lifted off of me and I could feel, ever so gently, the space between me and it. And as far as the quotation at the top of the page, well, I surprised myself today--I put on make-up. Yup, you got it--mascara, blush and lo' and behold even lipstick! Well, just a little lipstick. Happiness, like the pre-Spring morning sun lighting up the garden fence outside my front door, chose a fleeting spot in me to alight upon.
What else? I really noticed this morning heading back to the house on my walk around 7:30 that the high school boys walk like they have a limp. This is their cool gangsta' walk I guess, but do they know they simply look injured? Just something I noticed.
I noticed the waning moon which brought back an ironic memory. I saw the sunrise over the river cast the pollution coming out of two smoke stack a pink glow on the underside of the steam, while the top remained a purple-y blue gray. I wondered how would one paint that.
I'm a little uncomfortable giving all this space to joy, curiosity, city inspired beauty. I'm so much more used to describing the gut wrenching pain in hopes that if I just say it right, if I just get someone to really understand, it will go away. I aspire to listen to both the chimes and the sirens, but it is going to take some practice. I hear they both exist.
Chimes and Sirens
I never know what to listen to, the chimes or the sirens. Walking to the library just a few minutes ago I was attending to the tears behind my eyes and the frustration of my morning. I have been unable to hit the "sweet spot"--that good feeling, that alive and safe and confident feeling. I have instead been awash in amorphous fear and guilt and angry conversations in my head with my house mates. I have been furious at others and myself. I have been unable, in short, to keep myself safe from the delusions of my illness. I have wondered what I am really scared of; perhaps of the fear itself, perhaps of the delusions themselves, perhaps of the pain twisting in my chest, definitely of other people. I have been unable to plan my day--what set of activities will keep me away from danger--away from a deeper fall into emotional and mental chaos. My mind settled on worry about laundry; about having to make a decision whether to advance a housemate's laundry or leave it on top of the dryer if someone gets ahead of me in the laundry line this afternoon. I have ended up planning my day around getting home soon enough to be the first person in the laundry--no conversations needed, no decisions with possible dangerous repercussions to make. Perhaps someone will get angry at me for putting there clothes in the dryer, or for not. Maybe they will retaliate and throw my clothes on the floor. How will I survive if someone is mad at me--such terror it will bring me, such paranoia, such kissing ass to make sure they still like me, such complete lack of safety until they are no longer mad at me. So I must be the first in the washer today. Close up shop. The less communication needed the better. How lonely. It all feels like an emergency, all the time, to escape these spaghetti thoughts twisting around, these pancake thoughts piling up at amazing speed, these stuttering thoughts, trying to be born into my consciousness as my superego tries to shut them down. It is tiring to manage this fear.
This emergency of existence is often all I see, hear, talk about. But today, on the way here, I hear them both--the chimes of a nearby church and the sirens of a fire truck in the neighborhood. I am not all fear. It is a meditation technique, to be so open that you can focus on the breath, the sounds around you, and your body in space. Rarely can I do this, rarely can I even focus just on my breath. But today I hear both, the beauty in the bells and the wailing of the firetruck.
I am at a loss to name the parts of me that make music, but I'm told they exist. My psychiatrist, Dr. M, reminds me insistently from time to time that I am strong, confident, and powerful. He even told me recently that he was terrified of me the first few months we worked together. Somehow this made me feel good. I laughed, but I took it to heart.
But how about this? How about sitting here, writing into cyberspace, sharing my experience as I've dreamed of doing for my whole life. Telling my secrets, albeit anonymously, as I've always wanted to. With this blog, only in its third day of creation, I feel like my life has a little flavor to it. A purpose? I won't go that far--too much pressure. But definitely a little flavor beyond the coconut ice cream with hot fudge I allow myself once each week. A little flavor beyond my regimented life, a highly disciplined existence created for the sole purpose of staying safe, feeling safe. I picture my head as shaped like a coconut yet made of burnished steel, clamped shut unable to let anything out or anything in; inside it is rife inside with squirrelly thoughts and little movie shorts that pop up instantaneously, and so on. I picture my heart like an off white seed pod, wedged in my chest among my reddish, purple organs, sealed shut--no love gained, no love lost. I am, in this way, immune to change of the human kind. Borne of learning and interaction of tears and joy. I do not go there.
But here I am. Writing, like I've always said I wanted to. That's all I want to say. I don't want to turn this into a pressure, a potential cure (ha!) , a way out of my halfway house (although I've been thinking that all morning.) I've enjoyed this. Eighteen minutes left. I think I'll check my e-mail.
This emergency of existence is often all I see, hear, talk about. But today, on the way here, I hear them both--the chimes of a nearby church and the sirens of a fire truck in the neighborhood. I am not all fear. It is a meditation technique, to be so open that you can focus on the breath, the sounds around you, and your body in space. Rarely can I do this, rarely can I even focus just on my breath. But today I hear both, the beauty in the bells and the wailing of the firetruck.
I am at a loss to name the parts of me that make music, but I'm told they exist. My psychiatrist, Dr. M, reminds me insistently from time to time that I am strong, confident, and powerful. He even told me recently that he was terrified of me the first few months we worked together. Somehow this made me feel good. I laughed, but I took it to heart.
But how about this? How about sitting here, writing into cyberspace, sharing my experience as I've dreamed of doing for my whole life. Telling my secrets, albeit anonymously, as I've always wanted to. With this blog, only in its third day of creation, I feel like my life has a little flavor to it. A purpose? I won't go that far--too much pressure. But definitely a little flavor beyond the coconut ice cream with hot fudge I allow myself once each week. A little flavor beyond my regimented life, a highly disciplined existence created for the sole purpose of staying safe, feeling safe. I picture my head as shaped like a coconut yet made of burnished steel, clamped shut unable to let anything out or anything in; inside it is rife inside with squirrelly thoughts and little movie shorts that pop up instantaneously, and so on. I picture my heart like an off white seed pod, wedged in my chest among my reddish, purple organs, sealed shut--no love gained, no love lost. I am, in this way, immune to change of the human kind. Borne of learning and interaction of tears and joy. I do not go there.
But here I am. Writing, like I've always said I wanted to. That's all I want to say. I don't want to turn this into a pressure, a potential cure (ha!) , a way out of my halfway house (although I've been thinking that all morning.) I've enjoyed this. Eighteen minutes left. I think I'll check my e-mail.
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