WAGblog

IMPORTANT NOTE: to All Commenters

Do not worry if your comments do not immediately appear on the blog. I have set things up so I can screen out the sorts of comments that upset people, the spam comments and others of that ilk. There have been many of those lately, and I have had to go deep into the blog to remove them. But this way I get a chance to see each comment first, and approve or remove it, before it gets onto the comment page. Never fear, I will not pick and choose among the honest real commenters. I simply want to sieve out the grossly inappropriate ones.

I'm still in recuperation mode but will be working on an entry, possibly for Saturday or thereabouts. I must learn to say NO to Karen, as she will eat up all my time otherwise, and Joe and I need to find a hour each day to spend together without interruptions from her, just to sit and talk. But enough. I will be back soon.

I'm back

I'm back and eager to start writing, but need a few days to get myself oriented, and to read my mail and put things away and clean my apartment. Despite the good rest I had, and the help and medicine, it was a wrenching time, which I will explain eventually. Until then, let me just say that it is good to be back, if not at my best, hoping to get there as soon as I can. Kate, Ava, Paula, and all of the others who wrote to me or commented during my absence, thank you so much for caring about me when I have so little regard for myself. This always amazes me: that anyone could give a femtogram about me instead of running away screaming from the revulsion experienced by being near...me, the devil. I want to tell all of you to watch yourselves and watch your backs, because you never know when the big one will hit, but I realize this is useless. My saying anything right now will simply be disregarded as a "lack of self esteem." However, let it be known that such is what I would have said, had I felt anyone would have heard me: leave me, and leave now, because the big one is right around the corner!

Pam

Note to Debbie F.: I believe this episode was once again triggered not only by stress but by an exacerbation of CNS Lyme Disease, which fits so well with your paper's premise that I won't be surprised if it turns out that most M.I. stems from some purely medical, that is to say some infectious or toxic origin.

Re Mother's Day

"They" are telling me I won't get published, my book of poems about illness, not even by Femto's Kalmia book series on chronic illness. Their usual selves, they call me names: fatso, lardass, and Satan's Spawn, Whore of Satan (the last two being, just as The Beast, and Babylon, and the Beast ruling Babylon are one and the same, synonyms for Satan him or herself). "Remember Sunday? Sunday? Sunday? Funday? Remember Funday? Funday? Funday Sunday?" I do remember, as clearly or at least snippets of it as clearly as they do and I'm duly ashamed and embarrassed that They know about it. They put the command in my head to burn myself. I refuse to pay attention! I can't afford to, even though I know it would make them go away...LATER: So far, so good, I resisted, ignored the implanted demand. I have to fight them.

I see I haven't explained about Sunday, Mother's Day, yet, so I will now. Saturday afternoon, Karen and I went to the little specialty market nearby and I bought four kinds of cold salad dishes: penne with peppers, peppered steak and vegetables, sweet wild rice salad and antipasto. Plus bread, macaroons and a small "I love Mom" cake. I refrigerated everything and put the bread in a special "Fresher Longer" box that was guaranteed to keep it absolutely fresh overnight. I got very little sleep once again Saturday night (as I have for the past two weeks, turning off the 4am phone alarm and not taking the 2nd Xyrem dose, though it was sitting right next to the phone) so Joe drove all of us to Madison to visit my parents. Now, I was very tired and distracted, hearing voices and thinking thoughts I couldn't share. So I wasn't saying much at all. And I forgot entirely to take my narcolepsy medication all day, which didn't help matters one iota. When we had lunch, which we'd brought with us, I remained pretty quiet, letting Dad carry the conversation instead of helping out and being scintillating and charming, the way I was expected to be. I feel bad for that, but there was nothing I could or can do about it. Joe, in any event, was perfectly happy, and said he quite enjoyed the "gentle" conversation at the table, did not want the high-powered quick-witted intellectual tennis match I was used to providing. Later on, I thought my mother was unhappy with the day, but he said today she'd seemed fine, and that she participated in the conversation that so pleased him. Anyhow, caught up as I was in my own small world, I only half realized a conversation was going on until my father asked me a question (about the Indian god, Ganesh...I knew the answer; it would have been embarrassment city if I hadn't...).

When I was finally aware of what was going on in front of me, I noticed that Mom must have been on a diet, because she took very small portions, almost as little as I did, though she enjoys food a great deal more. Karen, on the other hand, while heavy, very unself-consciously loaded up her plate with generous helpings of all four salads, and later took liberal amounts for seconds. What a contrast! Karen, a big woman, but completely unafraid to be big, and unafraid to admit that she appreciates fine dining and good meals out. Also, unafraid to buy clothes, nice clothes, sexy clothes, big size and all. And my mother, who equally loves food but hates her medium-size body and constantly mortifies it in order to look more like her estranged and hated sister, oh so petite and tiny B. Much as I am sometimes ambivalent about Karen in so many ways, including one that will be described later on in this entry, I wish my food-loving mother had Karen's open enjoyment of food and her nonchalant, even innocent appreciation of her body. Karen is able to relish buying good clothes and eating good food without the negative self-talk that my mother treats herself to: You horse! You tub! Look how fat you are! I must say that this about Karen, for all her faults, is a breath of fresh air.

But, but, but...what I have to relate has to do with a negative aspect of that very thing, at least for me:

I slept in the car on the way home, exhasted from trying not to show my distress or reveal that I was hearing things during the visit. When we got back to the building where we all live, I gave Joe the rest of the pureed carrot soup I had made, because it is one thing he can actually eat/drink, at least in small amounts, for pleasure. And collected the leftover salads my mother had given me and prepared to go upstairs. Karen, seeing that I was not offering HER the leftovers, spoke up. "Pam, could I come up and have some salads for supper later on?"

Now, I had not eaten very much at my parents'. I never do in front of people. But I wanted some salad for supper and thought there would be enough for the next day's supper too, which would keep me from having to go shopping for another day. In short, I did not want to share the leftovers. However, for lack of any other prepared response, I answered, somewhat piqued, "Probably..." Inside I was furious. I knew that she would finish off everything that I might want to make last a few days. That if I let her, she would stay there and eat with me and take three quarters of what was in the containers to my one quarter and insist on finishing them off even though I might want some for later on in the evening, as I tend to, staying up late the way I do. Oh, I just felt so resentful of her constant eating, her eating MY food, free food for her, never offering me any of hers, and eating too much of mine at that, that I panicked. I wasn't going to let her have those leftovers this time, not even if it took desperate measures. Ignoring her, I pushed my cart into the elevator and pressed the button. Upstairs, I locked my door against her, then methodically and with little real enjoyment, I ate one salad after another. Until they were gone. Every last morsel.

When I was through I felt nothing except relief from the panic because now Karen couldn't deprive me of the food in my apartment, because I had already eaten it! Also, and most important of all, I'd found a way to answer her honestly when she asked for the leftovers. Now I could say to her, "I'm sorry, there's no salad left," without lying and without having to throw anything away in order not to lie. I'd won, I felt, as if it were a competition to see who would get to eat the salads. She got everything most of the time, or most of everything, for instance when she persuaded me to "share" a dish at a restaurant, and I took 1/6th to her 5/6ths but of course paid for half, a great deal for her, as she knew well enough. Why, she had it made it the shade going to a restaurant with me! So while I may have later regretted all the calories involved in eating a pound of deli salads, there was also a general triuumphant feeling of HAH, this time you didn't get it all! I did!!!

Karen called about 3 hours later, asking for the salads, but I didn't hear her, being sound asleep. I only heard her when she then came knocking. "You said I could have some salad for supper," she called through the locked door. I didn't go to open it but just stood in my hallway. "They're all gone. I ate them all." Silence. Then, "Oh..." Then, "My key to your apartment doesn't work in your door." WHAT? Had she been planning on coming in without my permission???? (Was SHE, despite her steadfast denials, the one who ate my lemon curd?) Now wait just a golddarned second! But I didn't have the energy to get into it then and there. Her key didn't work, that was the important thing. Good. I was safe for now. "I'm sleeping--!" and I left the hallway and went back to bed without waiting to hear her reply. F--k her! I WON.

Don't Know What to Do...

Paula wrote this comment (partial) to an entry a few days ago:

"...how dare you have the audacity to consider yourself the deadliest source of evil in this world. Do you truly believe that you can lord your evil over Hitler,Manson,Bin Landan,Judas,and the fictional Nurse Ratchet? You are aware of the historical facts that cannot be denied. You could not possibly have been responsible for Kennedy's death. You were a child. You were not in Dallas at the time of the murder, and you DO NOT have the ability to control the mind of ANYONE,thus negating your guilt by asserting your that you did not have to be present to do the dirty deed. Over and over you have told me in so many diverse ways that you are Satan, that your very being oozes over everyone and everything, rendering them helpless in the face of your odious power to kill, maim,control the politics of the world etc.,etc. You have told me that you did not even believe that I existed at all. I was simply a creation of you, the creator of the Matrix. I could say much more, but enough is enough. STOP ALL OF THIS FANTASY NOW, PAM. I know you are beginning to deteriorate, and if you don't get a grip, it'll be another glorious stay in the bin, your favorite place to be. You have risen above the heartbreaking pain and humiliation to which you have been subjected time after time after time. I WILL NOT LET YOU DO THIS TO YOURSELF. IS THAT CLEAR? YOU ARE PURE AND ABOVE REPROACH AND YOU HAVE GIVEN OF YOURSELF SO INNOCENTLY TO PEOPLE WHO CRUELLY TOOK ADVANTAGE OF YOU. HOW DARE YOU SAY THAT YOU ARE EVIL? IT IS THEY WHO HURT YOU TO WHOM THAT ADJECTIVE MUST BE APPLIED.

I am willing to lose you again as I did so many years ago, if my words will shock you into remembering that you CAN and MUST triumph over the feelings that I know are so real to you, but you have already proven that your MIND is superior to your emotions. Let me end with words from the inestimable Tracey Chapman.

"Remember the Tinman who finally found what he thought he lacked. Remember the Tinman, go find your heart and take it back."

Please reach deep within yourself and find the strength we both know you have. Do it for yourself, Pammy. I am real, I am here, and I am begging you not to leave me or all the others who love you. I bleed, I bleed, and I can plead no further."

This and other recent comments from others put me in a position I find truly untenable and unbearable. I feel like I am causing all of you more harm than good by writing here, just as I know I cause my twin sister a huge amount of grief and anguish just by being. I don't know what to do about any of it! THERE is the proof I am evil, right there!!! Not to mention all the rest. But Certain People are getting into my brain via my mind and tinkering around, trying to fix me (as in "We'll fix you!"), so I don't know what is going to happen or come out the other side -- it may be I'll end up a robot or automaton, doing their wishes, the airline crew, only, and therefore prevented from committing evil ever again. I need to stop writing, stop bothering and burdening all of you and let your minds be at ease, I did not mean to get you all worked up and emotional and upset. I apologize. The stolen lemon curd started it and I will find out who did that on my own, but I won't write about it anymore. I don't think I should write about anything at all right now as it only upsets people. Truly. If I stop doing so it is ONLY for your sakes. I can't bear to put you through the torment I have been subjecting you to; it's bad enough for me, but to include you, well, that is evil!

That's all I have to say right now. I haven't made up my mind yet, but I'm thinking about it. I think you all need a rest from me right now...

Another Comment on a Comment (Forgive me Kate)

Today's, that is, yesterday's entry elicited the following comment from Kate, which I reproduce in full. I will follow it with my response.

Dear Pam,

You absolutely must get the door lock changed for your own peace of mind. I know you will be more on edge than you should because of that and that will interfere with one very important thing: sleeping! I know from my own psychotic episodes that sleeping was one of the first things to go. The more I didn't sleep, the more paranoid I got. LIttle details that I normally would overlook would start to loom large, everything would be intensified by the perpetual feeling of fear. Perhaps that's what Dr. O means when she says "The feeling is primary." If you're feeling fear then it's very real to you and must be taken seriously by working harder at self-care. So be sure to keep taking the Xyrem.

Two things I'm happy to hear about in your blog today: that Joe is financially secure and that you see Dr. O for a full hour each week. Will you continue to email her till your visit on Wednesday? The more information she has I think the better she can help you and it will give her a few days to think about it, so she'll be prepared in time for your session. Dr. O sounds a bit like my therapist. My therapist doesn't go into the past and try to figure it out, though I do sometimes. She's uses common sense as an ally. And she follows strict boundary setting. She doesn't talk about herself unless I ask and even then will not necessarily answer my questions because she may not think it appropriate. She's someone who I would choose as a friend if she weren't my therapist. She's a good listener and has an excellent memory. And she's kind hearted. It's a very good thing that you trust Dr. O (as far as you are able). She sounds like an excellent person to have for support.

I think telling Joe in a email was a good idea. This gives him a head's up and an opportunity to be considerate towards you. Isolating yourself with all your intense ideas and feelings is a mistake. That's another thing I learned when I was deep into psychosis that my tendency was to withdraw from others. The more I did that, the greater the intensity became. Being straightforward gives you access to several levels of potential support from others and this you need in order to recover.

The question of the nature of evil, that's a tough one. You believe you are evil and have believed this ever since John F. Kennedy was shot, that's over forty years of believing. I have read nothing evil in anything you've ever written publicly or in private email. In fact, you lean more towards the saintly (yes, you do) than towards the devilish. You are refreshingly honest and articulate and despite getting annoyed at people in your life (as all of us do Pam), you have a definitely kind heart. You are generous and supportive towards others. But my saying this probably does nothing to reverse your negative beliefs because you have lived with them so long that they feel like second nature. Only you can chip away at this stubborn delusion. I think part of the problem is you don't get enough feedback from other people telling you that your life is appreciated. Joe loves you, but he has trouble showing it. And I'm sure others appreciate you more than you know. I know I do and that's why I try to tell you this when I can. Pam, people get sick and people die and bad things happen in the world, they just do without anyone necessarily being responsible for it. We are each responsible for ourselves. I think you're guilty more of underappreciating yourself than you are of causing harm towards others. And if you could undo the harm you believe you've done, wouldn't you do so in a heartbeat? How evil is that??

Posted by Kate K. at May 11, 2007 11:52 PM

Dear Kate, and all my other Readers and Commenters,

I have had the lock changed. It cost me $60 but it was changed as well as my mailbox. They recycle locks here so I have somebody's old one, but with 250 rooms and no one knowing which lock is on which door at any given time, it would be pretty hard to guess where an old lock had ended up. You'd have to try your old key in each and every door. This lock came from someone who had left an apartment on the 8th floor, either by simply moving out or by dying. Likewise, my old lock was recycled somewhere as well, though it was likely not a reciprocal exchange, because then I'd know my old key -- they don't take back all the key copies -- would unlock one of the 8th floor doors, a much easier task. Not that I intend to find out, but they'd be stupid to take that sort of risk as a matter of policy (or at least stupid to tell the new key owner where the new lock came from!). WAIT a Gosh darn minute here! IS THAT THE PROBLEM????? Did they in fact do a reciprocal exchange? Does the person...But he left, or isn't there any longer, the apartment was "vacated." That's what B, the super, said! He may have died, for all I know. But can the new person with my old lock somehow also have a key to what used to be the room's lock, which is now on my door?! And was he told, by chance, which door it is on?! If all those things are so, then maybe HE, or she, is the culprit, guilty of breaking and entering and tormenting me with this lemon curd business. Okay, okay! I won't mention the lemon curd again, because it isn't about the food, it is about the violation, the rape of my mind and my peace of mind. If I ever find out who, I'll give them a piece of my mind!

I dunno what to do about emailing Dr O. I don't want to inundate her with things to read as she gets hundreds of emails a week. What do you think about this -- giving her permission to read this blog from May 9 through the present, or from sometime in the past -- I dunno how far back to go -- up to the present. I already printed out and showed her May 8th MOODY, so...It seems the easiest way to inform her of what is going on. I just don't want to be a burden! And in general I do not want her reading it, as I consider this my private space and it is bad enough that some people keep tabs on me here, but I do not want her doing so, not ordinarily.

That's something people might weigh in on, by the way, even if very briefly, should I or shouldn't I? just this once.

After I finish writing this entry, I will be inserting something about trust into the comment section that belongs here. so feel free to check it out now or later. If you happen to be Dr O, please refrain.

I'm far from isolating myself! In fact, though, I need some isolated time by myself without interruption, and it shouldn't have to be after midnight the way it is now...Damn, I had no idea it was after 2 am! There goes the chance to squeeze in both Xyrem, as I have to get up early tomorrow morning, 7:30am to be precise. As for isolation, I have too much to do and not enough time by myself! I have been running around like a headless chicken for weeks, for months. I never could tolerate such a pace, never had to, always avoided a lifestyle where that was even necessary. Now if someone doesn't need me to do something or be somewhere at a certain time for a more or less lengthy chunk of time, I have somewhere I have to go or something I must do myself -- Dr O for instance, which trip both ways takes from 10am-1:45pm every Wednesday.

I don't get support from other people. I don't talk to them, even when they know something is going on. I won't talk with Joe or even look at him and I won't talk with Karen ditto. I will put on a good face for company and try to behave in a way that conceals my distress, especially this Sunday, Mother's Day. But I won't talk about "it" even when asked, because I do not want to burden anyone whose job it is not. If I feel I'm too much for Dr O, then most assuredly I'm too mu9ch for others. And if I ever feel that I'm a burden on Dr O again, and wearing her out involuntarily, I will leave her. I will have to, as I cannot help being me, but I can help where I allow my miasma and noxious influence to penetrate. Eventually, it will probably have to be done, maybe sooner rather than later, but I'm still in a wait and see mode. If she can protect herself from me, it will go a long way in staving off the end...but I have my doubts about her ability to do that.

Kate, as to your paragraph on the nature of evil and your statements about who and what I "am" all I can say is that to every item listed I could only and honestly say, I am not! Because, much as I call myself an atheist, there is a part of me who believes/ KNOWS that God reads my heart and mind and knows everything that is there, all the evil of my being, and prepares the punishment of hell for me. He has no forgiveness for me, except insofar as I give my life, my fully living, in service to Joe, cheerfully and in good will, out of my own free will.

Responses to Comments

I have been asked to respond to the recent comments I have gotten on my blog entries, so I will do so here.

Comments: Moody MAY 8 2007

Dear Pam,

You are NOT required to be a full time nurse for Joe. He needs outside help. It's just a fact. What are his finances like? Has he prepared somehow for this? Are any of his family helping with the cost of his care? My God, Pam, I'm amazed by all you do for him. I couldn't do it. I'm thinking about volunteering to help a disabled person in my area, but that would be ONE day a week not seven days! And you DO suffer from schizophrenia. It's not like you're all hale and hearty yourself. You NEED time to yourself to relax and to work on your writing. And I do miss your poetry! You have every right to be angry. If Karen is so willing to help Joe, then let her. She doesn't suffer from mental illness that I know of. I think you've been doing so well for many many months now, no hospital. So don't jeopardise your health for Joe's. I can't believe he would want that anyway. Being a caretaker is incredibly draining on anyone. I remember being with Brendan while he was so sick physically and emotionally all the time. It was a nightmare. You absolutely must demand a large chunk of time to yourself every day. I'm glad you told Joe you couldn't go with him to his doctor's appointment. He has to take responsibility for getting the care he needs without using his friends. I think it's time for you to write out a Bill of Rights stating what you're willing to do and what you are NOT willing to do in the months ahead. Once you've made it clear to yourself then read it to Joe or give him a copy. It's writing that makes you most happy. Writing every day is necessary therapy I believe and shouldn't be shirked. Why can't Joe and Karen respect the fact that you are a writer??
Posted by Kate K. at May 9, 2007 01:25 PM

Hello Pam,

I agree with Kate.

Do you have your own therapist? Or just Dr. O? I don't seem to remember you talking about a therapist in here. How often do you see Dr. O? I feel you may benefit from therapy, just a thought.

Have a good night and be well.

cb
Posted by Christina Bruni at May 10, 2007 07:22 PM

Dear Kate and Christina, and everyone else who reads this blog,

Thank you for your comments. THey do help and in fact I print them out and paste them into my journal each night, so do not think they go unheeded! Joe's finances are quite good, he has a large special needs trust to draw upon and his mother who freely administers it at 87, gives him whatever he needs, though he bears her such animosity that he yields her no credit for this and is certain she might take it away at any time. To explain, she was poorly equipped to be anyone's mother, but least of all of a possibly Asperger's syndrome child. She seems to have been largely neglectful and did the bare minimum necessary for him, though he also resents her for things that had to do with the fact that they lived on $35 a week of child support and couldn't be helped. These days though, she continues to be oblivious to his illness and it is hard to tell why. She insists on visiting without any warning, which infuriates him, and she fills his refrigerator with food for him, even though she has been told he cannot eat and has seen him with the g-tube in his stomach and the kangaroo pump feeding him through it. I wonder if she isn't a little senile, but he says she just finds it convenient to forget what she doesn't want to acknowledge...I dunno about that. But I no longer argue, it's of no use. Joe won't listen to reason about his mother. I have never met anyone so impervious over the decades to changing his thinking about his parents, so relentlessly unable to move on or forgive or understand or at least accept their foibles...But he is who he is and I can't change him so I don't try to change his mind anymore.

Anyhow, he has quite a bit of money, but is also very frugal, not to say stingy, and doesn't like to spend it, though has to now that he has medical expenses that are not covered by Medicare. Not as many as you'd think, though. So far, he is only using the interest on the total amount of the trust!

As for family, he is an only child and his father, long-divorced from his mother, is dead. He has many, many cousins and uncles and aunts (the latter in their 80s) but they do not freely or willingly come to him and pitch in. They may offer their help, from a distance, but Joe tends to turn them down, not wanting to discommode those who have responsibilities already or families they must see to first. I tried telling him that whole families can get involved, but no, he won't even call his favorite cousin, also "Joe", though he and his wife have offered to help. And even they don't call him often or in any active way, except to take him out to dinner once in a rare while. Cousin Joe may offer his services then, vaguely, I dunno, but if he does, Joe always turns them down. I don't know why, but apparently he either thinks he doesn't need any help or that Karen and I can do it and we do not have the responsibilities that his relatives do...

Karen supposedly has bipolar disorder, though she herself has told us that in getting social security disability she was informed that she'd not get it for her mental illness, it was too mild, only for "physical disability" -- so take that as you will. I myself have seen no signs of anything but a somewhat demanding, hyper-assertive very competent and capable woman in Karen, no indication of either mania or depression, so far at any rate. She says that she hasn't experienced either in years anyway. So, so much for that. I do know that when, the few times it came to pass, she was hospitalized, the nurses always told her it was unnecessary, that she should not be there, that she didn't need it. But Karen is somewhat dramatic too, so I think that plays a bit of a role, perhaps due to manic tendencies?

Chris, I meant to tell you that Dr O, despite being a psychiatrist, is my therapist. My twin sister, a psychiatrist herself, wants me to see an MD for therapy and so she pays her fee and I see Dr O once a week for an hour (such as a therapeutic "hour" is). If anyone is worth the money, she is. As a "double major" i.e. with both MD and PhD and a second specialty in Sleep Medicine, I couldn't have found a better psychiatrist/therapist in theory, and in practice I have found her to be the most compassionate and smartest doc I have ever been treated by. She seems as trustworthy as can be, though I have trouble trusting anyone, including her. Also she is one who doesn't transgress boundaries, which I have had problems with doctors and therapists doing, always always always to my detriment because I end up taking care of them! That's why I am wary about getting personal information from or about any therapist or psychiatrist. To my great relief, she doesn't share more than is necessary or than I absolutely want to know. We don't do a lot of digging up the past or figuring out where "things came from." Rather, we talk about what has happened during the week, my state of mind, what I've accomplished, concrete things, as well as how I am feeling and doing. Often she explains the brain to me, and tells me what symptoms are and where in the brain and why they occur, both psychologically and physically (an approach I instinctively appreciate as it doesn't blame anyone). And she reiterates it patiently and without annoyance when a symptom comes up, repeating the shorthand I remember but only sometimes understand: The feeling is primary. I keep misunderstanding that, or forgetting it, and even now I am just repeating meaningless words, but at least I know the mantra and can ask her next Wednesday what it means. Does it apply to the stolen lemon curd and soynut butter (which was taken by that abusive alcoholic ex-friend I'm pretty certain, cuz she can see my window at night and knows how zonked I am on Xyrem and would do something like that if she were hungry and not tell me...I barred my door last night with the laundry cart and rigged up an "alarm" -- did I write this already? -- with pots and pans balanced just so. If anyone so much as put a key in the lock, the pots and pans would fall with a crash and wake me instantly. And in fact, they did! At around 5am. You say it might have been the cat? No. It was NOT the cat. I remember distinctly that the cat was sleeping with me. As I flew out of bed to the bedroom doorway and looked out, I Eems stood right next to me, her back arched! But the lock was still turned the right way. And no one was inside, no one was at the fridge. No one was even turning the lock or coming in. I think the intruder ran away when she heard the commotion. So the alarm worked! So Chris, I got off track there, but I hope I've answered that question. I know you have more so I'll go paste those here and answer them too.

omments: Sacrifices MAY 9 2007

Dear Pam,

Please please consider that what you've written is not reality. You are not evil, and you have written in previous posts that you understand and accept that you are not evil. You are just going through a difficult, stressful time now which is distorting your thoughts. Pam, I am so afraid you're going to end up in hospital again if you don't create some boudaries. And, think about this...if you go in hospital, you can't help Joe at ALL.

Much love, Elizabeth
Posted by Elizabeth Grace at May 9, 2007 04:05 PM

Pamela! Elizabeth is very right, what you're experiencing now is not reality. Think about it, a part of you knows that you can not take care of Joe the way you would like, NOT because you are evil (you make me crazy when you say that!) but because you are human and you suffer from a serious mental illness. I know you love Joe and you don't want him to keep getting more ill, don't want him to die but his illness has NOTHING to do with you. Your illness is just telling you that you've got to make some changes, i.e. take care of yourself first either that or you are heading back into a deep psychosis and back into the hospital. The symptoms you're experiencing: feeling like you're evil and have to become a saint to atone and the mystery of the missing lemon curd, are classic symptoms of schizophrenia. You are one smart woman, infuse reasonable doubt into your psychosis and you can find a way out of the maze. I know you can do this. I care about you Pam. My eyes are tearing. You think you're evil and I think you're not only smart and talented but a good, kind, considerate person. You have to tell Joe that your schizophrenia is flaring up due to the stress. It's not your fault. It's not anyone's fault. It's the nature of the illness. Schizophrenia and stress do NOT go together. So, practically speaking, what can you do to start lessening the stress as opposed to increasing it? For one, you should see Dr. O as soon as you can. Good for you for sending her that letter. And keep posting! I'll be checking in each day. My love to you.
Posted by Kate K. at May 10, 2007 01:36 AM

I TRY to consider that possibility, Elizabeth, but now KAREN is sick too! Doesn't that prove I am evil and infect everyone close to me??? She may have a blood clot in her leg and is being admitted to the hospital even as we speak. At least, Joe and she rushed off, without even taking my cell phone, saying they were going to Admitting, not to the ER. So I assume she will spend the night in the hospital at the very least. I don't know exactly what a blood clot means in terms of consequences or dangers, but I know that Lynnie worried about Joe on the airplane getting a blood clot in his leg and having it cause pulmonary thrombosis, a life threatening condition. As I asked yesterday, Will I ever stop causing harm to people?????! What to do? What to do?!

Kate, I immediately took your advice and wrote Joe a brief email, telling him I was in trouble, relapsing, even though I try to put on a good front and not let him or Karen know. He usually doesn't open email until Saturday, as he hates the stuff, finds it overwhelming, but either he opened it early or he picked up on something this morning as, as soon as I came downstairs -- we were all going to his new neurologist's appointment and then Karen and I would wait while he saw S, his therapist in the same hospital building -- he asked, not typical of him, How are you feeling? I said, Fine. But didn't look at him (I can't look at anyone right now, too scary: I might cause damage and they might read my mind) only at his mouth in order to try and understand what he said out loud. Karen came in then and told me to move over on the sofa as she couldn't get to the other side, there was too much of Joe's stuff blocking the way. I moved. Joe continued, not letting the subject drop, You look drawn. I didn't understand him, but Karen did and repeated it for me. I'm okay, I said.

"Have you been sleeping?"

"I'm still worried about who took my lemon curd. I can't get that off my mind. It is --"

Joe smiled a bit, but not meanly. "I know, I'll buy you a new jar, so you can start with a full jar and won't have to worry about a half eaten one. Soy nut butter too."

"Joe, it isn't the lemon curd per se. It isn't the food. It's the, what's the word?"

Karen spoke up. "The violation."

"Yes, the violation."

I wasn't sure Joe understood that, but he kept at me, wanting to know what was wrong and if I would be okay. I frankly couldn't talk much, not in front of Karen and felt too confronted. Taken by storm. Didn't know where it was coming from, Joe or my e-mail. So I was glad when Karen interrupted and said we had to talk about questions we wanted to ask the neurologist before we got there, did anyone have suggestions?

Later on, after we got home (we'd made a mistake, or Karen had, the appointment was for JUNE 11! And Joe's therapy appointment had been cancelled, so we went there, a half hour trip, for nothing) Joe called, asked me to come visit him. We had just started talking about getting a real, professional door alarm for me, when Karen burst in the door and said, I have a problem...and that was when she told us about suspecting she had a blood clot. I wanted to reassure her, knowing something about what to look for, and asked her symptoms. But she only snapped, "Oh Pam, I don't have time! C'mon Joe, we've got to hurry!" I felt hurt by this but knew I deserved it, having caused it, so I went sadly upstairs and called Joe, after I knew they'd left. I left a message asking him to call me when he got home, tell me what transpired, how Karen was, what was wrong, what they'd found etc. Anyhow, to make that above story succinct: Yes, Kate, I did tell Joe, who I imagine will tell Karen. I don't know that Karen will care, though, or be anything but annoyed. It's Joe she looks out for and is committed to, not me. Now, though, all bets are off as to her reaction to me in general. If I made her have pulmonary thrombosis, which is more than likely, given my ill will towards her, all bets are off as to whether she will even speak to me! Who can blame her????

May 11th Exchanges plus Later Addendum

Dear Pam,

Thanks for posting today. Please keep posting each day. Okay, stick to the basics: take the meds (including the Haldol), it's VERY important that you get plenty of sleep, try to keep eating, don't isolate, tell Joe and Karen that you are relapsing due to stress and that you need their support, make an emergency visit to Dr O., keep writing, keep making jewelry. I hope you've had your lock changed and please do keep your door locked Pam. As best you can, try to feel safe--listen to relaxing music, watch an upbeat movie. This may sound silly but make a gratitude list when you feel most oppressed or frightened--food, shelter, clothes, Eemie, your writing, your jewelry, a hot cup of tea anything and everything you can think of. If you practice this it will help to change the balance from negative to positive. I know you're unhappy right now but this is temporary. Believe it. And attack the problem of fear and guilt with positive behaviors and thoughts and attitudes. Don't give into a negative world view. It's an illusion no matter how real it feels.

I will email you tomorrow. But remember, keep posting!

Posted by: Kate K. at May 11, 2007 01:29 AM

Dear Pam,

Please know that we care about you. I hope you feel protected with us and are able to just read our words and consider them.

At this point, it doesn't matter what exactly happened to the lemon curd, who did what or who didn't. What's more important is your response to it, and if you are still at the point where you can choose your response, I want you to let it go because it would benefit you to let it go and not keep the upsetment in your body and brain.

Pam, I care deeply about you, and about everyone living with schizophrenia, so much so that when I retire at 55, I'm getting a job as a peer advocate or job coach.

It could benefit you to rest and relax. I feel things have become triggering for you. You have done too much for too many people without getting much of anything in return.

I feel you could use the support of a therapist to set some goals for yourself and plan simple objectives for the day, week or year. One good plan is always to try to stay out of the hospital.

We care about you. I care about everyone haunted by this disease. I feel you need to see a therapist. I would like to see you write a response to our comments and let us know that you will at least consider them. Certain times of the year could be triggering for you and I hope you will at least consider our suggestions.

Chris

Posted by: Christina at May 11, 2007 03:43 PM

I do take your advice and suggestions seriously. Not all of them work for me, but I think about each one. I think it is important to find out who stole/ate the lemon curd in order to get it off my mind. I don't see how I can without that happening. I believe it was M--- but I need to know for certain! I may wait up tonight to see if she tries to get in again, let her actually get in, without the "alarm" set, then confront her with what I know. It may be the only way!

I set daily goals or at least make out a schedule with Lisa, the morning med nurse, and she and the night nurse Ana have decided to have me eat something while they are there, to make sure I get something in, though it might be only a yogurt each time. I'm eating some baby carrots as we speak and I had some black olives in oil and frozen red grapes earlier. I took both doses of Xyrem last night, but unfortunately only slept from 2:45 until 8:00 am with a waking in the middle when the pots and pans crashed to the floor. I dunno what else I can do, frankly. I try not to obsess on my essential (as in my essence, my soul's) evil, but it is hard not to think about it when it's overwhelming me and things are happening like Joe's possible bladder cancer and Karen's blood clot...God, what more harm can I do than I have already done???? Plenty, there are too many people around me to make sick! I should stay away from everyone! Instead I am going to see my mother on Mother's Day, not a good thing to do, except that not knowing or understanding why, she would be upset with me if I didn't come, so I'm damned if I do and damned if I don't. Since I deserve to be damned, I fully deserve that state of affairs!

I think I missed a whole lot of comments, since I know there was one by dfinn somewhere (Sorry sorry sorry, Debbie) and another from Kate, but I can't seem to figure out where. Anyhow, I'm tired and need to rest and want to write in my journal and want to go see if Joe and Karen or at least Joe is home to tell me what was wrong with Karen, so I'm going to stop here.

Exchanges plus later addendum

Dr O wrote at 12:30pm:

Pam, you should ask Karen who I think probably just helped herself to the food. It would be like her wouldn't it? Please try taking some Haldol, it may help.

Pam wrote at 6:20pm:

I did [ask Karen], and she didn't! She is a saint! [as I am Satan] Besides, someone got in between 4am and 8am, when she was asleep, and besides, Why would ANYONE do it? But I asked her! The thing is, NO ONE seems to think this is as mind-f--king as I do. Why eat all the lemon curd or someone’s soynut butter if not to drive them crazy? Joe says I ate it in my sleep, but I went to bed at 4am, and slept till 8am, and certainly didn’t wake up between times, and besides I would remember doing something like that! And it is NOT like me to eat those things! So now I’m totally scared and confused...Why would he laugh it off and say I did it, when it clearly was someone else?! No one seems to think it is serious or scary except the Lynn L, who has already forgotten I told her about it (her memory is gone). And she doesn’t seem to understand that it is a deliberate mind-f--k and manipulatively trying to drive me around the bend. I don’t see why or how an extra Haldol will make this go away. I will take one because you asked, and just to calm down about it. But I know I’ll be sorry after doing so...

Pam

--------------------------------------------------------

That exchange took place today, in response to yesterday's blog/letter, which I emailed as well as posted here.
Dr O clearly does not see the importance or the bizarre malevolence of this act against me, the subversive cat and mouse torment and fear it is meant to engender. Joe suggested I set a trap in case "they" came back, but I don't want them to come back and don't intend on giving them the least opportunity. If anyone comes back it would have to be someone with a key, Joe or Karen or an office person or maintenance person! That would narrow it down pretty much. My old keys were stolen and the lock changed last week, so those keys are useless, except for my car keys which were on the ring, so if that thief knows which car is mine she or he could take it out and drive it, run down the gas, get it into an accident, and I'd never know...I think I know who it was anyhow, did I write this already? Last week or so, a woman who lives in this building came to take my old bookcases, since Lynnie had bought me some taller new ones, and she got to telling me her life story (in such a rapidfire way that I could not get a word in edgewise, until she asked if she could borrow my Tracy Chapman CDs, which naturally I gave her). In the process I learned that as a problem -- bigtime -- gambler, she felt she had a right to win the big one, to get the all-time big lottery prize just like so many others were lucky enough to, and was going to keep gambling in any way she could until she did. (I pointed out, during a lull, that that might be why in her elderly years, after 35 years of working for the government, she was in low-income housing instead of a condo of her own...).

Anyhow, later on, after she took the bookcases, she came back with a small case full of jewelry-making supplies, beads mostly, and mostly wooden, but lots of them. She said that one of her quick money making schemes had been to make jewelry, but she'd never had the patience to teach herself. Would I want to give her ten dollars for cigarettes for the lot, plus the case? Hmmm, I looked through it, probably more than ten dollars worth there, so I said, Yes, I'll give you ten dollars. But my money was in the hidden place in the living room where I stash extra cash, and I knew she'd see me take it from there. Nothing to do about it, though I tried to take it surreptitiously. Ten dollars in her pocket, she left. I left too, with the door unlocked, to go to Joe's or Karen's briefly with some message. Then came back upstairs in a minute or two to get ready to go out to lunch with them. But where were my keys? I couldn't find them! They were nowhere, not that I could see, though I always put them on the hook by the door when I walked in, knowing how easy it was for me to lose them. But they weren't there, or anywhere else I looked. This made me so nervous I called Karen and told her we'd have to get take-out and eat in my apartment as I didn't want to leave without knowing where my keys were. I was thinking that the gambling woman had taken them, but had no real basis upon which to accuse her, just a feeling and the fact that she had had the opportunity and the motive and the knowledge of where I kept my money...I moved the money to another hiding place first thing, and after an hour-long search for my keys, gave up and called the office to report the problem and beg them to change the lock ASAP. So that's why I think I know who took the keys. I think she wanted my money for cigarettes and spending money, having gambled all hers away (she was already hard up, needing to sell her beads for cigarette money near the end of the month) and having mooched from me as it was. (I have a carton of cigarettes on the shelf, for nostalgia's sake I suppose. I do not smoke them, but they come in handy for those who do.) Anyhow I suspect that she saw my keys on the hook as she left, and simply impulsively grabbed them, probably has done things like it before...OR I will eventually find the keys in my apartment once it is actually picked up and clean. Then I will know for certain I am evil, accusing someone innocent of being a thief on NO grounds other than my imagination.

I'd accuse her of eating my lemon curd too, but I don't know that she is smart enough to want to torment me mentally. I think she is not that subtle, would go only for the saleable stuff, the computer, the money, that sort of thing. But who else?! Who could be so malevolent? A thief isn't malevolent, only bad or wrong or criminal. Malevolence is something darker and more complex, closer to what I am, evil! No wonder they come to me, evil is attracted to evil. But in my case, I'm terrified of the mind-f--k involved, the tease, the pleas, the cheese in the trap! If I make one wrong step, I'll be caught and killed...Someone could be in the apartment already as it is!

Oh, god, I'd better go take that Haldol and calm down before I proceed further. I'll post this, then maybe write more later.

LATER:

Here is the second reply I wrote to the same email from Dr O:

Pam wrote at 10:45pm:

Please give Karen a chance...You only know her through me and I honestly don't know how objective I can be. What I'm trying my best to tell you is -- I'm not entirely sure what I've been saying about her all along isn't/wasn't more or less, well, paranoid? She may be out to get a good meal from Joe, but she does a huge amount for him, really asking for nothing back, like taking him to the ER (cancelling her own appts at the last minute) and staying there 7-10 hours without complaint several times). Like driving him to the Clinic every two months, without complaint and without asking for anything more than meals at that famous seafood restaurant. I'm the evil one, not her! I make him ill, then I refuse to learn to drive on the highway because I don't want to have to leave like that at the drop of a hat or go out of my way and have to be "on" for 10 hours in a strange ER! The thing is, I am expected to do so, and to be able to do so! It is my turn next time! What do I do? What do I do?! I have trouble finding enough to talk to Joe about for an hour when I have to hold the conversation up, in the ER how would I even stay awake 10 hours, let alone deal with the situation or wait with Joe or do it at all, the noise, the uproar, the police, the questions and no place to sleep and waiting with Joe and having to talk with him to pass the time and nothing to say and getting sleepier and sleepier and scared and more scared...NO ONE WOULD UNDERSTAND THAT I CAN'T DO IT! Obviously, no one does, even now, though I have told them over and over how little stamina I have! Karen is MUCH better than I at dealing with these situations! SHe is a master at getting Joe what he needs, knowing how to throw her weight around when things aren't happening when they should be happening. Joe knows it and I know it. He also knows I killed him and I know it... What will become of us????!! Now he has a polyp in his bladder -- causing blood in his urine -- that we're told has a chance of being cancerous. JOE DOES NOT KNOW THIS. The doctor told only Karen, as he didn't want to worry Joe unnecessarily. Christ! Do I ever STOP???!!!! I dunno what to do. How do I keep from doing more harm????

---------------------------------------------------------------

Thank you, folks, for allowing me to write my thoughts "out loud" here and for not running away but sticking with me. I only hope my miasma does not work remotely or at a distance...The thing is, no one knows, except for Dr O, that these things are happening. I mean, I talk about the lemon curd all the time, but no one seems to understand how important it is to me, and so they keep changing the subject as if it is simply a passing whim that needs only glancing attention. Neither Karen nor Joe know the rest of how I feel or what is going on, and I don't tell them. Even Cy and Lynn see only the surface and I put on a good show so they have no clue. They don't need to know. It would only...I dunno. They don't need it right now. I don't want them to know, I don't want to burden anyone or otherwise upset Joe, who is overwhelmed with changes himself...I have to swallow everything! I have no choice, but I'm eaten up with guilt and fear, not knowing how to NOT do harm to people, how to stop making people sicken and die! I know what I know, but I also know I cannot tell anyone, for fear of harming them in the very telling! It's an untenable situation.

Ana, the night nurse, came just as I was getting up to take the extra Haldol, so I simply took the afternoon dose instead. Now I will go take the third dose, the extra one as I promised, and go to bed. I need to somehow get up at 4am and take the second dose of Xyrem, which I have been skipping. I set my alarm, but for some reason, I wake, turn it off, swear at whoever left it on, then turn over and go back to sleep, forgetting there was a reason for it: to take the second dose! Tonight I'm going to try putting the alarm and dose far away from my bed so I have to actually get up, wake up enough to think and see the dose and take it before I tumble back into bed again.

Enough for now. Have to try to eat something.

A Crazy-making Act Against Me

Dear Dr O,

In my phone message I told you there was nothing else I wanted to say, but there is. Something weird is going on. When I got home today, I looked in the fridge for something cold to drink and noticed my jar of lemon curd was sitting on the main shelf, not where I usually put it. I opened it on a whim, and lo and behold found it was pretty much gone, though the last time I had any — just a few days ago -- it was half full. I KNOW I did not eat it. I have nothing to put it on, and anyway I simply know I didn’t! Also, the soynut butter was clearly opened and some of that eaten as well, though I myself have not even tried it. Now tell me, how could this be????? I called Joe, asked him if he had eaten it, because it is the sort of thing that he CAN eat so he might have...But he said, no, the last time he had lemon curd and soynut butter was with me last December on biscuits. What the F--- is going on????? Who did it?! Did Karen?! I don’t dare ask her, but she and Joe both have keys (and need them, as I keep losing or misplacing mine) and could come in at any time. Plus, we all sleep with our doors unlocked so one or the other of us can get in in the event of an emergency...Makes me very nervous. I’m locking my door tonight, I don’t care what they do. If I die because no one could get in to save me, well, that’s how it goes. But obviously there has to be someone in there already to kill me, so he got in somehow and if he did, they can so there is nothing to worry about except rape, murder, and dismemberment, which would be my just desserts and I’d collapse if he came in, be unable to utter a syllable or even move to save myself, so what’s the use. So who stole, or who ate my food? I don’t care about the food per se. I can get more jam and soynut butter! But the idea that someone is coming in at night and eating out of my refrigerator, and scaring me like this is unbearable. Who would torment another person so??? Who would be so sadistic???? Who would do something so, so, well, so crazy-making????? Would M--- [a former friend, alcoholic and abusive] be doing it? She liked to eat lemon curd plain, out of the jar, as I do sometimes. Sometimes she would buy a jar just to eat, saying it was like lemon pie filling. I thought that was gross (it is made with butter, of which I cannot abide the thought of eating a spoonful). I might lick a spoon but no more than that. Could M---- be getting in late at night? But I didn’t even go to sleep until around 4 am last night...So unless someone ate it all during the daytime, when the door WAS locked, in which case it would have to be Joe or Karen or someone in the office downstairs or a maintenance person, somebody was in my apartment eating my food between 4am and 8am, and must have been watching my windows all night to see when I turned off the lights! But why would they do that and no more. Nothing else was stolen that I noticed, not my purse or computer or money or anything of value in plain sight. This is NUTS! Why would someone commit such a crazy-making, tormenting, nonsensical, but REAL and utterly confounding act?????

I am sorry to go on and on about it. The point is NOT the food so much as the torment the act engendered in me and how much it scared and confused me, no doubt deliberately. NO DOUBT DELIBERATELY.

Pam

Sacrifices

I now understand what I have to do. I caused Joe's illness, by my inherent evil, by the miasma, the aura of malevolence around me, but concretely too by getting him off lithium, which attentuates the effects of the neurotransmitter glutamate, an excess of which is thought to cause the motor neurons in ALS to die. In short, if he hadn't been taken off the lithium, maybe he would not have developed ALS! It could be that ALS was lurking there all along and the lithium protected him from developing symptoms, until I took it away by my saying he had no mood disorder...My evil was the actual cause of his illness, but it took the concrete form of this action. So because I have made him sick, and caused so much more evil in the world, I have come to understand that god has given me one last chance to atone, an actual way to be Forgiven: sacrifice my life for Joe, give over my life in service to him, all of it, all of my needs and desires and goals and wishes. Turn them all over to do only that.

Now, Joe does not need that much help right now. Mostly phone calls and some help organizing and scheduling plus my attendance at some doctor's appointments, simply to get the information that he will not get. He doesn't understand medical terms or know what questions to ask and hasn't the nerve to ask them even if he did. Frankly, Karen doesn't either, though she is good at asserting herself when she does. So most of these doctor's appointments fall to me, though all three of us go to the neurologist this Friday. But when he does need more help, I must give it freely, willingly and cheerfully. I need to turn my spirit into a completely selfless giving soul, who has no needs or wants of her own. It is the ONLY way to atone and gain Forgiveness, which I so desperately need. The ONLY way out of hell.

Moody

I've awakened two mornings in a row cranky and irritable, not wanting to get up or see anyone, let alone "do for" anyone, including Joe. I've had one snapping bout after another at Karen, all started by me, and none really deserved except that I am at the end of my rope in terms of the stress I can take and the amount of people contact I can tolerate.

Yesterday, I suggested that instead of my going with him, Joe could see his internist by himself if we simply wrote out "speeches" on his computer for his "voice" to explain his various needs. He does that for his therapist after all, and he also knows that his doctor ignores me completely, does not so much as acknowledge my presence in the room...and I do not have the assertiveness to force Dr I to do so the way Karen does. But no, Karen decreed that Joe was too confused by medical matters, he NEEDED my presence there, there was too much to tell the doctor for him to handle. Joe, by the way, is only 7 years old?

Well, that was the last straw. I raced down to Joe's and started typing in his NextUp Talker program. I wrote out a speech that enumerated briefly all the points that he needed to make, with all the details necessary yet put succinctly and clearly, without unnecessary verbiage. I played it for Joe. "Do you want me to add anything?"

He beckoned me to hand over the computer and started typing a bit, using the index finger of his weak right hand and the full complement on his left. Then he played it. Something came out wrong, a glitch, a misspelling. He fixed it and pushed the Speak button.

"Hand it over," I said. And added something myself, then played it again. Joe nodded, then held out his hands. I put the laptop in them, as close to his body as I could so he wouldn't have far to lift it.

That way we managed to get the speech the way he wanted it, most of it my work, but a few tweaks added by him. During this process we also talked, Joe in his garbled, nearly unintelligible way and I, trying to figure it out, repeating what I thought he said for corroboration before answering. I must have mentioned that I was awfully tired, because when I asked if he could go to Dr I's alone, he slowly typed, You are tired? Yes, I said. I'm pretty tired. Then he nodded that he could go alone. (It turned out that just as I suspected, the visit went fine and he got all that he needed -- all the records were sent that needed to be sent, all forms signed and all prescriptions written, thanks to the "speech". The real problem was not that he couldn't go alone but that he was afraid to go because he was leaving Dr I. He needs a more local one and Dr I is not nearby nor available enough and Joe was fearful of telling him.)

I felt like I'd won a battle but committed war crimes in order to do so. Why didn't I simply go with him? Because he has kept this doctor for years, despite the fact that every appointment is for 4:00pm yet no one is taken in before 5:00pm when the doctor actually arrives and Joe usually isn't seen until 6:00pm, at which time Dr I gives him 5 minutes tops. This even after he developed ALS! I was disgusted by this sort of treatment and said so, but Joe did nothing about it and kept going, largely because he doesn't want to change anything or rock anyone's boat. As if this would rock Dr I's boat! But Karen, of course, managed to talk him into changing doctors, since she has some influence over him, where I do not and never have (he never pays any attention to what I suggest, as I have long lamented). And so, by a roundabout route, he now just happens to have MY internist, known apparently for his caring and lengthy appointments (unknown to me), with an office right next door.

Where was I? I was speaking of my bad mood. Of the war crimes I committed in not going with him. Of how I felt worse when I didn't go than if I'd simply accompanied him. I didn't get anything done instead anyway. Didn't accomplish a thing all day, except for later helping Joe empty several bins of old books and papers, in preparation for getting his living room ready for delivery of a hospital bed in the next week or so.

Then Karen informs me that Tuesday is "our day of the week together" when Joe, Karen and I are supposed to do something fun, like taking a trip somewhere and eating a meal in a decent restaurant...WHAT???!!!! If I could have, I'd have hit the roof. That was fun??? For whom? For Karen, presumably. Joe can't eat, obviously. Though he can have thick smooth soups and eat mashed potatoes, he gets his daily calories through the g-tube (the feeding tube or gastrostomy tube). And I do not enjoy fine restaurant meals at all, hating to waste food as I am inevitably forced to do if I have to order an entree. I bring home whatever is leftover, but usually can't eat it all before it goes bad even then...So why bother? Still, it makes me feel really bad. But more than that, I had had enough of being with THEM and wanted a free day to myself, to solitude, to NOT helping anyone! I wanted one day of letting Joe do it all for himself, which he is still capable of doing, actually, much as he has acted like he can't.

He lets us do too much for him, and today proved it by clearing the living room of his junk and throwing away and sorting out the rest of the stuff he never could part with before. Lo and behold, Joe suddenly becomes capable of doing something when he doesn't have someone to do it for him...Maybe I should have refused to do something with or for him earlier, despite Karen's demands. Maybe Karen ought to lay off and stop doing everything but phone calls for him. Of course, she never did do the dirty work, but laid all that on me!

But my bad mood continues. I gained a couple of pounds -- I am ashamed even to admit it -- eating almost nothing and so I feel HORRIBLE. I feel evil and obtrusive and that I take up too much room on this planet and that I suck up too much air. I don't feel capable of taking any more stress or confusion of messages from people. I didn't sign up for "this" you know...I never claimed to be a saint, far from it, as you know. And I didn't marry -- Joe or anyone else. We were always JUST friends. Karen may -- does -- have no life of her own, she needs to be with someone all the time too much to have developed one. So she may glom onto "Caregiver" as a life-giving identity and be able to give her all to the job (and make me feel guilty for not doing so, not even wanting to do so). But I am/was just beginning to develop a life I enjoyed, a full life, a real life not based in and on hospital stays, when this happened and took it all away. How long will it last? Well, Joe plans to get a vent, a ventilator, and if all goes well, he could live for years! Am I expected to give up my life for his for all those years? Despite my love for him, he is/was never in fact the Love of My Life. He has too much the touch of Asperger's (very high functioning autism) to be that. That is to say, he is too lacking in empathy, through no fault of his own, but nonetheless lacking in it, for me to feel understood by him. And to not feel understood by someone is for me the worst thing in the world: why else would I take such care with language and my writing if I didn't want to be understood? And why would I fear psychosis so much but for its incomprehensibility?

Be that as it may, just because I am here and a friend am I obligated to give my life to Joe? If I were a true Christian, I know I would. I have tried to act like a Christian, unlike most Christians actually do, being selfless and giving up what I want for what Joe needs. I know I should continue to do so, and that even asking these desperate questions is impure and a sign of sin and lack of virtue...I should in fact be helping Joe out of the goodness of my heart, and not as it is beginning to be, unwillingly and partly resentfully, or at least, I dunno, angrily in the sense that I don't like Karen's demanding that I do this or that, while she takes over and decides what she wants to do. And I don't like the fact that he always defers to her. F--K it! I am ANGRY! I may be paranoid about Karen, god knows. I don't seem to have any objectivity about her whatsoever, and so I have to tell you NOT to judge her on what I say about her, or to take it with several grains of salt. She happens to be marvellous with Joe, and terrific in getting him what he needs, and in knowing the sorts of things and services he could use. After all, she was around her mother over the two long years it took to die, all in her care, and she has been in and out of hospitals for juvenile arthritis as a child and a couple of joint replacements as an adult and utilizes the health care system to the max as it is. She knows her way around and gets the best of the best care every time. So she obviously can help Joe out. She is also sociable to the max and while overly assertive and too willing to use her own questionable physical disability to get advantages, she also uses this assertiveness to cut through red tape on behalf of Joe, and outright manipulativeness when that doesn't do the trick.

The point being that my problems with her, which may be more me than her, and the reality of the situation are two different matters.

I am tired. I am tired. I am tired. And the work and commitment has only just begun. What happens when Joe is really and truly disabled? What happpens when he needs suctioning several times a day and care for his vent 24 hours a day? (An aide 24 hours a day employed at $8/hour costs approximately $60,000 a year.) As it is, the sound of his coughing, just the sound, is nearly unbearable to me. Coughing has for years been a sound that is nearly intolerable to me, almost to the point of making me sick to my stomach it is so upsetting. And the sound of suctioning is that much worse. But I bear it, and give no clue to my feelings. If I have to gag or retch I conceal it from everyone, what else can I do?

I don't know what to do. I'm NOT a saint. I'm the opposite, though I wish I could be a saint or behave like one in atonement for what my being, my essence is. I'd like to sacrifice with better grace; at the same time, I don't want to sacrifice the life I only just started to have...But I HAVE TO. No two ways about it. If anyone has any advice or suggestions for me, I'd dearly love to hear from you.

Resolution of Disney Problem

I am of course following the “demands” of Lynnie and Dr O’Malley due to the threat of hospitalization as much as anything, but am also relieved to have the decision taken out of my hands, as I was pretty much dreading the trip. Joe is on the fence about going. I am not sure he wants to, but doesn’t want to disappoint Karen. Karen thinks he does want to go, and she certainly does. So unless Joe can be honest with himself and with Karen, and really decide one way or another, they will go whether or not he wants to, simply because he wouldn’t speak up. I wish I could do it for him, but except for telling Karen what Joe told me, that he was afraid he would lose her friendship if he cancelled the trip (what he’s really afraid of is that she’d be so angry she’d never drive him to the Clinic again, which he desperately depends on) there is not much more I can do. She wants to talk with him herself, and I know she will try to persuade him to go. So I asked her to please start the conversation with her reassurance that she would never drop him as a friend over his canceling the trip, even though she would be disappointed.

As for Karen and me, I don’t know what goes on between us, nor how much is deliberate or even real on her part, and how much is pure paranoia on mine. For example, for a while I was certain Karen secretly drove my car to avoid using up her own gasoline, because my gas seemed to be going down at an alarming rate (my homemaker drives me 65 miles to Fairfield every week and back to see Dr O...that was why it disappeared so fast). I had no reasonable reason to believe this. She has NEVER DONE ANYTHING remotely suspicious. I simply suspect her of nefarious motives and behavior...This is the problem: she NEVER turns out to feel or corroborate much of anything my mind accuses her of, either secretly or to Joe or in my blog. Sure, she is overly assertive, but that comes in handy when Joe needs something and people are disinclined to give it, or if I need help with a difficult phone call. And she uses her handicapped status shamelessly to get what she wants. I also happen to believe that she could work and certainly could have worked twenty years ago instead of being given SS disability, but somehow wrangled enough doctors into agreeing with her desire not to work such that she got it...But that’s her problem not mine.

With respect to me, I have to admit she never seems to harbor the ill will that I believe she does and when I sit down to talk with her, or more likely explode at her, she usually calmly explains to me what I don’t understand, and seems entirely bemused by my accusations. She doesn’t seem to know that I am jealous or upset with her...YET I still feel — possibly a paranoid feeling -- that she intentionally tries to make me so. At the same time, I make spiteful remarks about this and other perceived slights, and they honestly seem to go right over her head as if she hasn’t the faintest idea what I am being so nasty for. And of course, I never come right out and tell her I am jealous, that I feel like she is trying to take Joe away from me, do I? Well, once I actually did, and she said she never could steal Joe, even if she wanted to. But she didn’t. He was attached to me completely. She was merely good friends with him, and that was enough.

I wish I could simply accept Karen with her foibles and not get so upset about her and Joe, or her-with-Joe. She has stopped talking about Harvard this and Harvard that ever since I pointed out that it was unpleasant boasting on her part. (I’ve already told her, did the first time she mentioned it, that belonging to a Harvard-Yale-Brown family, I have no illusions about the Ivy league, nor believe it is the be all and end all of academia. In fact, I counseled one of my nieces not to apply to Brown, because I thought she’d be miserable there, and suggested a smaller, less well-known, less "prestigious" school instead. A school I would prefer and would apply to now not Brown if I were sixteen all over again.) Sorry about the digression, where was I?

Ah, Karen and her foibles. She's too assertive, not humble in the least. That's my biggest beef with her. And she can be selfish, though that is coupled with a real concern for others. See, she has good points too, which I consistently overlook when I’m upset or angry or paranoid. She is patient, very, and calm and very organized and rarely gets angry, even when I am angry. She is also quick to forgive me when I calm down again. She is, of course, very intelligent, which is nice, as I always enjoy having an equal in that department, even if our interests lie in different areas. She is much more interested in cultural affairs, both popular and not so. She can go to the opera in the afternoon then tell me all about a certain well known film personality whose ex-wife was at the theatre that day or some such. I, on the other hand, prefer the sciences and poetry, personal essays and natural history, and have eclectic non-fiction interests that pretty much exclude popular culture. Yet we manage to find common ground with jewelry making, which I learned at Adult Ed and taught her, and each of us fell in love with it. Now we regularly get together to “bead” -- inaccurate term as we don’t just string beads but use wire to connect beads — and talk while we are doing so. Sometimes I will still get angry, but she usually doesn’t respond with anger unless I go over the top, at which point she’ll insult me back, or more likely trade accusations, as baseless as what I accuse her of but hers clearly not believed, while I am thoroughly convinced of mine!

A lot of the trouble between the three of us is in fact just me, not Karen and not Karen-with-Joe, though I often believe and report that it is. I cannot tolerate being with people all day, so up at the Clinic I began to decompensate after 36 hours straight in their company and several more to go. I started yelling at Karen in the hotel restaurant about something Joe was going to ask the waiter for her, without even knowing what it was. I accused her of being a prima donna and a spoiled princess etc and ranted and raved about how demanding and inappropriate she was...and here I was, yelling in the restaurant. Who was the inappropriate one, you well might ask! I have trouble being in any threesome, unless it is Lynnie and Sal and me, and then it is okay, though even then I feel sort of left out or ganged up on, as if it’s two against one. With Karen and Joe it feels more like it’s Karen driving Joe to be against me, largely because she is the assertive one and Joe more passive. But he makes up his own mind and decides to side with her, she doesn’t demand it. Frankly, I am often wrong about something, simply have old info or haven’t been told something due to their forgetting to tell me, and so can’t know, or often I have assumed something that isn'[t true or jumped to the wrong conclusion or forgotten something. (I forget ALL the time, all sorts of things. In fact, I depend on Karen to remind me about everything, or I’d not remember to do much. I write notes to myself, but I lose them. Or set alarms to remind me, then forget what the alarm is for. So Karen tends to call me and tell me what to do or remind me we were going to do XYZ at such and such an hour. She doesn’t get at all upset it I say I will visit at a given time, and don’t turn up then. She simply assumes I’ve forgotten again, and calls me. She is right, of course. I would not NOT go, not without calling first.)

Whoops another long digression. Gotta watch out for those as they make me, and you no doubt, lose track of what I was getting at! BD

There is no real reason for me to be jealous of Karen and Joe. After all, Joe told me before the StoryCorps interview that he believed in Love at First Sight, and that he had a Love of His Life: Me. Even Karen acknolwedges that and seems FINE with it. She doesn't seem jealous of me, which she might if she were after Joe. So what is going on here? Joe has tried time after time to reassure me; and Karen in her own way, without knowing it, has done the same. But I can't seem to be reassured...And I can't seem to give Karen any quarter, not truly. I might seem friendly to her, but deep down I feel only a profound animosity. I act friendly only out of a desperate wish to find a way to become friends with her; you know, smile and you'll feel happy, so act friendly and you'll feel like a friend. It works in its own way, too, in that I do feel sociable when we bead or do errands, for the most part, though I get irritable at times, for no good reason except that I impute to Karen some nefarious purpose in doing what she is doing. But there's aome amount of fellow feeling, at least part of the time.

I dunno how to resolve this. Karen seems to like me. But I mistrust this and assume she actually hates me, only acts as if she likes me to keep the peace. When she comments on something I say to Joe or adds to what I say to the therapists or nurses who see him, whether RT or PT or OT etc I feel like she is telling me I'm no good, I'm worthless etc. But if one analyzed the words, and even the tone of voice, I have a feeling that NONE of this would be borne out.
But even if this were possible, I doubt it would convince me, because my certainty -- a thought or brain configuration -- comes not from any concrete evidence but from, well, my certainty itself.

Disney Trip To Be Cancelled...

I think. At least my participation will be if Lynnie and Dr O have their way. I saw Dr O this morning and she said she and my sister had spoken the night before. She wanted to make an appointment to talk with Joe and me at her hospital office next week, but that cannot be arranged. She is concerned about my state of mind and Joe's state of bodily decline and does not think the trip is a good idea for either one of us. She was particularly concerned about Joe's respiratory status and my ability to tolerate five days away. She even offered to see us at my apartment on the 18th, a few days before the trip on her way through Hartford, if she couldn't see us at any other time, though it would be cutting things close. I told her I'd see what I could do but I didn't think Joe had the energy to drive all the way to N Hospital an hour away. Nor could he stand riding with the friend/homemaker who drives me because of her loud voice and constant talking (she adores Joe nonetheless and would do ANYthing for him). The last arrangement I made was that we would be available for a phone call on Friday afternoon, if she was able to call, though we understood it was her day away from the office. I did all this arranging without telling Joe that she was going to call, or might, because I didn't want to worry or upset him. I figured, it would be better that he simply get the call cold, with me there with him to talk all three of us on speaker-phone, than to have to anticipate the three-way.

However, later on tonight, I spoke with Lynnie herself, and she made it clear that she was 100% against my going, especially since she didn't think I really wanted to, and knew that the one time I went up to the Clinic with the two of them I nearly had a breakdown, it was that stressful. She said, "Who is taking care of whom?" I answered, " I'll be taking care of Joe, and so will Karen." She paused. "Really? I mean, Really? Pammy, who will be taking care of you? I mean it. I don't want to offend you but I'm being blunt here. You need taking care of when you travel. How long is that flight? Do you know how long you have to wait at the airport? What about the crowds, the new rules of security, what happens if by chance you get separated from Joe and Karen? Karen may be looking out for Joe, but she is also looking out for herself. She will not be looking out for you, and I don't think you are able to handle everything that happens on a trip of this kind. Not yet, not with Joe so ill."

I thought and thought. Did I want to go? The threesome business was certainly troubling, as was Karen's constant pushiness, her near bullying to go and go and do this and that, especially around food and restaurants.

"You know," added Lynnie. "I don't think you will be going anyway. I think you will be in the hospital."

"WHAT?! Of course I won't! There is no reason for that." I was upset by the very suggestion.

"It would be a good excuse not to go, wouldn't it? And you need it, you aren't in control, your thinking is out of touch, you've lost way too much weight and won't gain it back. Don't you remember all my speeches, and what I go through at night? Go back and reread what I said about my anguish and...Oh, I shouldn't even bother to talk about it. You won't listen. You never do. It is useless! I'm talking to a brick wall. I don't even want to continue about this...By the way, I love the necklace and bracelet you made for me. I wear them all the time."

I knew the non sequitor was meant to soften the impact of her venting but now I was upset. "I wouldn't go into the hospital. That's unnecessry. I don't weigh that little. Besides, what do they know? They couldn't help me..."

"You do weigh too little. You are doing yourself permanent damage. You could have spinal fractures and...Yes, I suppose you could refuse. Unless Dr O could hospitalize you involuntarily, the commitment laws in this country would probably permit you to leave. But you would be only doing yourself a disservice, harming yourself irreparably, and torturing me. But go ahead. Do what you want. You always do, and to hell with me!"

I can't remember everything else she said. I'm amazed I can recall this much in fact, though the conversation took place only 10-30 minutes ago. She did say that she worried Joe could have a pulmonary embolism, sitting for 3 hours on a plane, immobile, because of muscle atrophy in his legs. She also thought it was insane, the three of us, all disabled, only one of us truly competent to travel, going away to someplace we don't know, for 5 days. What would they do for me if I decompensated? Would they do anything at all? (I can think of other big questions: Where would Karen and I go if Joe got sick and needed to be hospitalized? It was Joe who was paying for the trip. I don't even have a credit card and Karen never spends her own money. What would we do? Where would we go? How would I cope? How would Joe get home? All good questions that even Karen has not prepared for, good travel executive though she is.)

Finally, Lynnie offered to speak with Joe alone, that is, without Karen and we arranged for her to call this Friday instead of Dr O, at the same time that Joe and I arranged some time to be together without Karen. She is planning to explain to Joe why I can't go, and I imagine she will say a few words about the inadvisability of Joe's going. But we are hoping that as soon as I decide not to go, Joe will lose his nerve and also decide he does not want to go without me, or that Karen will (I doubt that...). I think Karen needs me to come with her, for company when Joe is too pooped to see the sights, as much as Joe wants me for his own reasons. But maybe they will both be okay with just the two of them going. After all, Karen may reason, they spent 2-3 days in Montreal (when he was in much better shape) last year and did fine. Why not Disney World now? I hope I can muster up some words for Joe to consider in opposition, not too strong, but just to think about. But that will be useless in any event, because as I have lamented so many times here, he never does pay any attention to what I say, and won't do so in this case either. Karen is so much more persuasive, he listens to her. And if she intends to get to Epcot Center and Disney World, she will talk it up so well that Joe will believe he can do it without the slightest trouble!

Thanks to all who commented on the post "Difficulty Connecting"-- you were all right on, as they used to say in the late 60s-early 70s about someone hitting the nail on the head. I was simply too adamant about going for Joe's sake to hear it at the time. I am, however, certain of Joe's love for me, despite our differences and difficulties at the present moment, some of which we discussed yesterday and seem to have resolved. At any rate, I hope to have a good talk with him on Friday and find some of the old spark still there that used to animate our conversations. The topic may be different, now that he is ill, as well as the medium of his communication but he is still Joe, the inveterate engineer, and I am still Pam, his poet.

A New Poem

thanks to your kind and good advice. It is my first in months!

POEM IN WHICH HIS ILLNESS ASSERTS ITSELF

Amyotrophic Lateral Sclerosis otherwise known as ALS or Lou Gehrig’s Disease leads to total paralysis of the voluntary muscles due to death of the upper and lower motor neurons.

Leaving Bed Bath and Beyond,
I can tell from the barrel stave
curve of his spine, that rounded hump,
the worsening flap-flop of the bad right foot
we’ve overdone it. I blame myself
though it was his can opener we’ve returned.
Boary with stubble, his skin
gray with fatigue, even his hair,
lying limp along his skull, pleads exhaustion.
Come on—-I urge, let’s go home. I resist s/mothering,
the urge to help him into the car,
but dawdle before slotting the key
in the ignition until he struggles inside,
timing the two to be coincidental. All my words
about his needing responsibility, self-respect,
dignity, independence, scatter
like the puffs of a smoke circle. I ache
to reach out, to take away, to take care
of what in the end my care cannot
change, taken or given. We do
what we can for one another in this life,
hope, pray, wish and plead for someone
else to when we can’t. Who isn’t dying,
after all? And who does not sometimes
need special care? At home,
though his arm muscles quiver, he smiles
as he opens the heavy door—-for me.