WAGblog

My new art gallery website

A brief entry this morning before I go to PT for my shoulder. I just started a second website featuring my artwork and jewelry, which is now up for donation and sale, and also simply for viewing. If anyone is interested, follow this link (and let me know of any problems.)
http://artid.com/Turtleworks

What to do, what to do?

I don't have much time to write this morning but I did want to make a few notes about a dilemma, though not much of one since I don't have a great deal of choice in the matter, that presents itself today, a day that is predicted to reach 98° F with a heat index of >105° F.

Joe's mother, Betty, wants to visit Joe today, and so, because she can't get anyone else to drive her and she is at 89 unable to drive herself, J has offered to pick her up and bring her to the hospital, then drive her home after the visit. But she wants me to come with her for the company...J, doing this on a working day, instead of her usual jobs, gets paid for this, mind you, as is only fair, though we are using my car and my gasoline since she is only getting $100 for the entire day and gas would cost $40 for two round trips at a minimum...

Did I forget to tell you that one trip, one way, is an hour and twenty minutes? Aye, there's the rub, because not only does J want me to come with her on the way out, but after I run interference for Joe with his mother (he won't be alone with her, considers her ministrations abusive, when in fact she is 89 and only trying to care for him) then she wants me to make the return journey with her back to Betty's apartment, so she won't have to deal with Betty alone.

Now I have to tell you the one thing about J, whom I otherwise really enjoy and appreciate, I find exhausting is her constant yanging about her health or her sister's health or something that she is thinking about that she obsesses about or that is on her mind that she simply cannot not talk about...If I say I do not want to talk, then she switches on the radio so I can't even read. If I want to sleep- if I am falling asleep against my will (in the front seat of course, since I could never leave her and crawl in the backseat to really sleep) she might tell me to go ahead and get a cat nap, but she'll just go on talking and talking as if I weren't trying desperately not to hear her. Oh, I sound like such a shrew, and really J is very dear and so kind to me. She takes such care to see that I am okay when things aren't going well, and worries about me when I am upset or when, for instance, I had that kidney thing two weeks ago...It's just that I am so upset about this upcoming trip...I really do not mind J's talking usually, she's okay. And when I've had it, I tell her! She's not so dense she doesn't get it. She can't help her voice or the anxiety that propels her constant talking...

But today she gets to rest in the lounge for an hour or so while Betty visits Joe and I run massive interference between the two of them...Not getting any rest or respite myself, not having had ANY since 8 am...THEN I have to get back in the broiling car and drive back, or be driven (I cannot drive farther than 3 miles myself without falling asleep at the wheel) to Betty's apartment an hour and 20 minutes away, listening to J and/or Betty the entire way. Finally, once Betty is dropped off, I will ignore J's desires for me to stay up in front but simply crawl into back and sleep for the drive home, I don't care what she wants...

But I dread the entire day. I dread it as I used to dread simply getting up in the morning. I won't even have any time to eat...I only eat at home mostly, or if necessary a little bit in a restaurant, but usually bringing most of the food home to eat when alone. Today I have to get through till who knows when, in 98° heat, without even a chance to be by myself to recuperate in any fashion. My temper has already been fraying big time these days...

Speaking of which, I dunno why that is. I do know that I have been scream-startling BIG time to lightning, and to light knocks on the door, which has always been a sign of Lyme disease poorly treated. The fact that I have been blowing up at Karen, and even at J this past week bothers me. I feel myself short-fused, and usually I am not (though Karen may disagree, with almost everyone else I am even tempered for the most part, except this past week...). It worries me. Am I in for a flare-up of the Lyme? How would I know? Well, aside from psychiatric symptoms, which seem in check at the moment...I do not like this simmering just beneath the surface, an angry tension that has no basis for it except that it is there. It's a feeling and is its own reason for existing...As Dr O says, The feeling is primary...

Anyhow, I will write again soon, hopefully tonight, to report how things went, but for now I am just venting, trying to quell some anticipatory anxiety, indeed the profound dread I feel about the coming day. THere are few things I fear more than exhaustion, than having to plough through feelings of utter fatigue and sleepiness and un-doneness...and to KNOW that I will feel this way by the end of this afternoon is just too much for me to bear.

But it has to be done. I don't know what else I can do about it. I could ask J to drive me home before she drives Betty home. She was supposed to do that, promised she would last week. But I'd feel so selfish doing so knowing I was adding yet another half hour onto J's day of driving. but it doesn't feel fair that she gets to use MY car, MY gas, get paid to do it, and also get me to accompany her to Betty's and back when it will exhaust me and it is all in a day's work for her. SHe just has no idea how much this is going to cost me...

TTFN

Global Warming or Amazing Grace

This past week I spent the whole hour with Dr O talking about my fears concerning global warming, looming social chaos and the environmental catastrophe I felt was soon to overtake all of human civilization. Not only did I rail against our stupidity in overpopulating the earth, despite loud and vociferous warnings (remember calls for ZPG - zero population growth) in the 70s or 80s and our feckless overuse and wasting of earth's resources, including fossil fuels, but I likewise accused her of being unwilling to help me "opt out when the time came."

"And when will that be?" she asked. "Sometime soon?"

"I don't know, I don't know. But it could be within the next few years, the way the world is progressing towards disaster. If the permafrost continues to thaw and the antarctic to melt..."

"What? What do you anticipate will happen?"

"Well, seas will rise, maybe 100, 200 feet. Florida will disappear. All the coastline will be drowned. All of Connecticut will go, certainly the Connecticut valley, which means me. I'm right next to the Connecticut River...and I'm so afraid of drowning. I am afraid of the Big Wave..."

"You've always been afraid of drowning. It is your biggest fear--"

I became tearful at the thought that all of civilization, all those children born in innocence and hope would also perish in what I believed would be a sudden and devastating tidal wave as the Southern ice cap slid into the sea and sea level precipitously and catastrophically rose on the crest of an enormous tsunami...

Well, today I was roundly but gently disabused of this wrong-headed notion. Thank heavens! My good friend, Leila, to whom I also confided my grief for the species as well as my personal fear of death, managed to penetrate the gloom and doom. A Buddhist by temperament and conviction, and longtime meditator, Leila lives with the understanding that everything changes and that nothing is permanent, everything becomes something else and it is all of it good and natural and "the way things are." She has an attitude of acceptance about this that I truly admire but cannot yet share, though I find I depend on her belief to shore me up sometimes...One good thing about Leila as well is that she is a National park ranger and naturalist and self-taught cosmology and physics enthusiast who knows, well, all sorts of things about the paleo-history of the human race that I do not. So she was able to assure me that humans have survived many different climate changes. We may yet endure, she told me, even if all of us do not. Also, and even better for my immediate frame of mind, she reminded me of certain physics principles that contradict my dire predictions of an enormous tsunami wiping out the US coastal populations and indeed coasts around the world.

First of all, the Antarctic ice cap would never abruptly "slip off into the ocean" and even if it did, the ice would float. Floating ice does not displace water and therefore it would not cause sea levels to rise. Only the slow melting of the floating ice cap would do that, which would take a fair amount of time, leaving giving us some warning and a lag time in which to migrate inland...in what Leila believes is only an absolute worse case, even impossible, scenario. Mostly she told me I was succumbing to Hollywood's disaster-flick mindset and scare tactics. She reminded me that I have a choice to live in the present and enjoy life or live in the fear of the future and tear myself apart.

All of which makes me try to remember that we do not know what will happen, but it likely will not be the sudden world wide catastrophic cataclysm predicted in movieland. In any event, I can live my life in fear and trembling, or go about living it as I really want to: with the joy that I am in recovery and finally able to do the sorts of things I am now able to do, enjoy the friends I am finally free to make, look forward to the future I can still allow myself to hope for. Nothing is certain but that nothing is certain - neither disaster nor bliss. And I can accept that what is to come will come, and that every molecule that makes me and makes up the planet is stardust, borrowed from the universe. And it all eventually goes back to being stardust in the great revolving dance of becoming and of un-becoming.

But of course, I will not remember this for good. No, knowing me I will forget this as often as I recall it, and probably will sink again into the slough of despond once more, feeling that it is hopeless to dream and act and hope because "tomorrow we die" and it is useless to go on as if there is even a tomorrow. But I do know there is a way out of that hopeless way of thinking, I just need to remember how to trigger the healing response, the helpful non destructive thoughts...If nothing else, I need to remember to ask Leila to remind me how to change my thinking again. It would be better by far if I could self-generate such healing thinking, but so be it for now.

Someday, (if there is a someday...oops, you see what I mean?) I may have that sort of indestructible backbone assurance that disaster is not just around the corner. But right now personal disaster is not all that distant a memory, falling apart in the blink of an eye is not that impossible a thought to me for me to disbelieve the notion that civilization could not be wiped out in just such an instant. But if I can go a year, two years , three or five or six without a breakdown, then perhaps I will have a better sense of stability both personal and planetary, and come to trust that some things can, well, be trusted to stay more or less the same.

The climate will change, as we now know for certain, but the earth will remain more or less the earth, though its surface may appear different due to climate differences. The planet will go on, with or without us, and so will life of some sort...Meanwhile, when I grow sad to think that "we" must end, that geologic time is occuring in the blink of an eye, I will turn to those who can set me straight, change my pessimistic brain, lead me onto another path. I'll link hands with someone who takes me where it doesn't hurt so much, someone who sees the future as half full. I will learn to see through a clear lens rather than darkly through one unpolarized and de-colored, the one called fear.

TTFN

Probably a false alarm

Good news! Dr C said my worry about renal disease is likely nothing. Unless the numbers keep trending up and down, ie the numbers going higher keep going up and those going down keep going down significantly, where I am now is not bad. It would only be if the numbers got a great deal worse that kidney disease would be significant, according to what I "heard" in our conversation today. So I'm not going to worry. He did a few more tests and said he would call if anything further needed to be done, but I doubt anything will be. I think all is fine...I think Lynnie was blaming me and worrying me for no good reason and that in fact there had never been any reason for Dr L to notify me as to undue abnormal results in the first place. So all's well that ends well. I'm going back to making my papier mâché and jewelry and not being overly concerned about my health for the time being. Jeeze, what a waste of time. I've got better things to do!

One note I will add though is that Dr C did remark that he didn't believe extended use of ABs were a good idea or ever necessary...throwing me into a tizzy, unbeknownst to him, and of course now Josephine wants me to quit them too (she accompanied me to the appointment). I would do so, were I not afraid that I would become psychotic again and end up in the hospital! I know that Lynnie would say that I should not ever stop them and Dr L too. I suspect Dr O would agree...I think. So who to trust? NO ONE really knows...I myself don't really know! I don't want to continue to take ABs forever! I want to stop them, if I can! I wish Icould, I want to try! But I am terrified of ending up back in the hospital yet again, and of Lynnie's wrath if it fell out that way...I dunno. I just dunno what is the right thing to do, or what is the correct way to go. I don't know if it is really Lyme causing my relapses or just my imagination, the way these other docs must think! I believe it is Lyme, yes, but THEY don't...So who is right?

DAMN! I want off as many drugs as possible, and so I'd love an excuse to stop the ABs and if they are not actually keeping me sane, not actually working to keep me Lyme-free and out of the hospital, why take them? But I think they do in fact do that...If I only knew for certain! Big problem here: I hate to feel like people disapprove of me for taking them...But wait...Why do I care? Why do I care if people disapprove of me, if I am able to stay sane on them? Who cares what they think? Why in fact do I care? They don't care what I think! They don't care if I go crazy, or end up in the hospital or why! They only care that they have an opinion and that I know it...They have no stake in this but to vent their opinion. If I become psychotic and lose three months of my life to some hospital ward, what is it to them? It has no impact. It only ruins my life for three months or more! THEY DO NOT CARE. Why do I care what they think? I should not let their opinion matter to me...It should not play a role in my behavior or in my decision. They are not gods and should not have any power over me more than what I give to them. Why should their opinion be more important to me than my own experience? LISTEN to this, Pam! Hear what you are saying! Pay attention. Someone, anyone, tell me: Should the disapproval of others be the one critical factor that decides whether or not I continue to take the antibiotics? Come, tell me truthfully.

Sitting in the Dark...

It's late Sunday night and I've got to sleep so I'll probably start writing this then finish it on Monday or Tuesday...But I wanted to start it while I was still up. I am still a bit shaky vis a vis this Herxheimer business...Feel like I am in the midst of a hurricane at the moment, sitting in the dark of my bed/sitting room with the people all around me yelling and screaming and Indians whooping and hollering and all sorts of hallabaloo going on...even though I'm aware that I don't think any of it is actually happening. I feel like there are people sitting right across from me watching me type and staring at me doing it even as I sit here! So I dunno how to figure out any of it...I'm just trying to get out from under one thing without another faling on top of me....(I went to bed. What follows is written the next day, Monday.) What I wanted to explain was that It was Kennedy, Ted Kennedy's brain tumor this past Tuesday, that announcement , that really tipped me over into despair and anguish and started the downward cycle last week. I'm embarrassed to admit this, not wanting to seem a groupie or a celebrity hound or something, but because it was always my feeling that I had been responsible for JFK's assassination ( I was a sixth grader ignorant of the politics but not of the "romance" of Camelot ) that somehow whenever something bad has happened to the more nuclear Kennedy family, my heart crumbles...It happens more and more now, as the years pass, actually. I don't know why. But in any event, the news of Senator Kennedy's illness on Tuesday, coming just when I was leaving for my writing group, was probably a bit too much for me...along with the Herxheimer thing doing whatever it was doing and the two collided and combined to do a number on me.

My poor dear Joe is almost complete paralyzed now. Oh, his face is rather mobile, he can make faces, and lets me know when I've made a mistake in guessing what letter he wants on the alphabet board, but he cannot point to what he wants or even tap a bell most of the time (sometimes he is able to do so, and we can have a phone call of sorts). But he cannot communicate witih the nurses enough to tell them what he needs or let them know when he is in pain, unless they specifically ask him the right question. For instance, the other day, they did ask him if he was in pain, and he "said" yes, but when they said "where" he pointed as best he could to his back. He pointed only to his chest, meaning through his chest to his back. But naturally they could only see what he was pointing to and believed he was having pain in his chest. Few bother or have the time, lord knows, to spend it scanning the alphabet board, line by line, letter by letter to let Joe laboriously spell out the words to say what he wants to say. It is truly awful to know how nearly locked in he is, unless Gary or I or Karen is there to find out what it is he wants (and frankly I dunno how much Karen finds out, because she doesn't do the scanning well and is unable to stand up for very long to do it in any event...)

Karen is angling to get Joe to hire a case worker, a private social worker for some reason, probably because he won't pay her to do the few things that he needs, and she thinks she can wear me down by refusing to help ME, maybe even driving me crazy, and thereby forcing Joe's hand. Meanwhile, all she used to do for pay, has fallen on me, which is not that much, only scary for me because it involves phone calls, and also difficult for me to remember to do, given my memory problems, and time constraints...It would help a lot to have some, well, help, frankly, from SOMEONE...I just dunno who would help! Josephine would, I know, I just never think to ask her to do so. And I ought to call on Joe O, my Joe's cousin more. But I'm afraid that he works so hard and won't want to take on the added burden. He just has no idea how difficult all this is on me. Nor how much is on my plate at the moment, what with Cy and other things I don't want to mention until there is some resolution on them or at least some solid facts I can talk about, rather than fears and worries...

Fears and worries...I feel, yes, like I have to keep them to myself, suffer in silence and not bother anyone. Why? Because as I was always taught: Pam is stoical, Pam does not, must not show or even have any feelings. So I have swallowed them, forced them under, ignored them to the point that I refuse to feel anything I might ordinarily have felt.

But if I did have any feelings? Well, let me pursue this a bit.

First of all, What am I talking about? I speak of a series of blood tests that seem, and I emphasize seem since it is only information gleaned from the internet (and Lynnie's stated concern) that provides the occasion, blood tests that seem to indicate I may have renal disease, stage 3 (not at all mild, that is to say). Why do I say this? Oh, I shouldn't go into the details, except to cite both creatinine and the eGFR which numbers are both respectively higher and lower than they should be, by a significant amount and have been progressively getting higher and lower since at least December of last year. This itself is not good, since it passes the three month mark that the Internet sites I looked at mark as stage 3. Now, be assured, I do not know at all if any of this is absolutely true, and may not know even tomorrow, when I see my PCP, who is also, by happy circumstance a nephrologist . But I hope at least to have some clearer picture of what I am looking at or where we go from here. If not, I fully intend to switch docs immediately, as this one has given me nothing, been no help to me at all otherwise; he does nothing for me but refer me on to specialists, even when I don't want to see a specialist! But now he is the specialist I need, so push has come to shove and we'll see what he is made of...(I should explain that one HUGE problem is that this Dr C is a DO (doctor of osteopathy), not an MD, and there is a conspiracy of DOs in this area against me. I suspect he is in it and is colluding with all the other DOs to get rid of me -- by hook or by crook...This is what I have to fight against, evey time I see him, on top of all the other problems!)

But to get back to the Pam the Stoic theme: So, if I have stage 3 renal disease, what about it? How do I feel, now, worrying? And what am I anticipating I'll feel? Or what am I refusing to feel? Ah, big questions, hard questions...

One feeling that is on the tip of my tongue, so to speak, or forefront of my mind (?) is some anger, alas, anger that NO ONE bothered to tell me earlier to see a doctor...Not even Lynnie, no not even she. I can't understand it. Dr L, who did the blood tests, simply sent them to me, month after month, circling the results but never once told me what they meant or called me to alert me to anything being seriously amiss (which of course may mean that nothing is, in the end...But then, why is Lynnie so concerned?) What kind of doc does such tests monthly, routinely, and sends them to me, then doesn't keep track of the results closely enough to spot a trend and make note of it, and alert the patient to see another doctor? I live an hour and a half from Dr L. I could not easily see him, nor is renal disease his thing. But he should have told me to be seen up here by someone else! He should have been on his toes and noticed as indeed he did! he circled the result but did not tell me what to do or what it meant, so naturally I did nothing, he didn't tell me I should do anything! -- otherwise why bother to serially perform such tests????? As for Lynnie, she did notice the on-going abnormalities, and did worry, but she never told me to see a doctor about them. She got mad at me, BLAMING me for doing whatever I was doing wrong...Yes, she did do that. It was my fault, always, I wasnt drinking enough, or was drinking the wrong things, or wasn't eating enough or the wrong things...NEVER acknowledging that maybe the meds themselves were to blame. NO I was the one at fault ALWAYS...but never did she tell me simply to go to a doctor about it. Even tomorrow's appointment was made because I wanted to see Dr C about my osteoporosis, not possible renal disease...So, that's how I feel, or part of it, ANGRY...Angry...P.O'd...upset...worried...what's done is done and who knew and would anything have changed anything?...I feel, well, how do I feel? I feel more in limbo than anything. Invulnerable, not really scared. I don't believe anything could be wrong, or is wrong. I feel fine. Why should I worry? They are only numbers. Numbers can lie! Wouldn't I have symptoms? (Need to look them up...)

So I'm either the stoic, still, or I really cannot borrow trouble in advance of trouble's descending. I just don't feel like worrying. What is there to worry about? Dying? Feh! If I am going to die in, what? how many years? I don't think it would be all that soon, FINE, I do not want to live in the chaos and rioting and social instability of a globally warming world, esp one running seriously out of oil or once the seas begin to rise...So give me two, three , five years? I don't care -- that would be enough, as far as I'm concerned...I might want more, if social stability continued, but I could "live with" ie die with less.

Eek, I'm being awfully morbid. No one is saying I'm dying yet!!!! BD No one is even saying I have kidney disease! I've just indulged an urge to google a medical test I didn't understand and I may have completely misconstrued the explanation! If so, I deserve the worries and panic, such as they may be, that followed.

Readers, do not weep for me just yet. Let us wait and see what Dr C says tomorrow, okay? I suspect all is perfectly fine, and that I am in ideal health and tiptop shape, not a thing wrong from stem to stern. Okay? I just did want to allow myself the chance to say what I needed to say, without holding back for once, just for once. I will not do it again. It is simply too melodramatic for my taste and too over the top and risky in terms of others feelings, in case I am wrong...

Remember: I know nothing for sure, except that I know nothing for sure.

Lyme spirochete is a corkscrew-like bacterium

This is the corkscrew-like bacterium or spirochaete of Lyme Disease. The other famous spirochaete disease is syphilis, which is often itself treated with long term-antibiotics, a good model for Lyme treatment. My personal question concerns the corkscrew morphology: does it somehow aid the bacterium in penetrating the tissue more easily? Is it significant in terms of function? Would the spirochete form indicate anything special about its particular habit or "tastes" so to speak. I wonder...

Lyme tick is out and in force

This is the tick that carries the Lyme bacteria. You should ALWAYS wear long pants and socks, and use bug repellant when walking in tall grass or in the woods. I know, bug repellants might not be "good" for you, but I assure you that the risk they confer is a great deal less than the risk of getting Lyme disease, arthritic or neurological. So go outside and have fun, just take certain precautions because Lyme is everywhere...

Infectious disease can produce symptoms of schizophrenia

I'm slowly recovering from a "bout" with demons...All week long, well, ever since Tuesday night's writing group actually, where I became suddenly distracted by numbers and letters from random sources -- license plates, book spines, letters popping off the pages of writing in seemingly significant combinations...All week long I have been in a state of increasing distress, culminating yesterday, during a migraine with a call to Dr L, my infectious disease doc. The spur to call him was 1) an extremely exaggerated startle reaction when the morning nurse Lisa, knocked on the door -- I screamed and jumped, though I'd known she was coming! 2) I was thinking I didn't want to live any longer, that it might be better, the world might be better off if I were dead 3) the sudden nagging remembering that -- wait a minute, I have been here before, haven't I...? And what came of it? Oh, yeah, it turned out to be, what? Lyme disease!

So, I called Dr L, first to ask for my bloodwork to be faxed to me -- it seems I have kidney malfunction that needs to be looked into. And then asked to speak to his answering machine. I told it that I thought the antibiotics were not working despite the increase, that my symptoms were worse than ever, that I didn't know what to do...

Well, forgive me if I crib an entry I posted over at the Schizophrenia Connection but here's what I offered over there:

I've written elsewhere that my worst "break" -- my Y2K meltdown -- coincided with, was actually caused by I believe, a case of neuro-Lyme disease. Not only do I believe this, but so does my twin sister, one psychiatrist in my life as well as the "famous Dr O," the other psychiatrist in my life. (I should mention that there is also my brother, Chip, who is yet a third psychiatrist and there are others beyond those, but you get my point...). The reason we could link the two, the infection and the psychosis, was that I had an MRI during the psychosis, and an MRI nine months later and it turned out there was a noticeable difference between them. The later one showed multiple patches of scar tissue where none was seen in the MRI nine months earlier. This would indicate that something had been going on in January 2000 that, being fresh, might not show up in a scan but having consolidated into scar tissue nine months later finally did. Furthermore, according to my infectious disease doc, the pattern this scar tissue took, these patches, is often seen in Lyme disease in the brain (neuroborreliosis).

In addition, I thrice tested positive for the bacterial DNA in my blood and urine. This is really the gold standard for a positive test in this disease. Sometimes getting a positive blood test is often impossible, even when a person is floridly ill. According to what I've read, this is because the Lyme bacteria, the spirochaetes, do not "like" the blood but prefer to lodge in tissue, the muscle or fat of the body, and therefore they are not easily found during a routine blood draw. Hence the difficulty obtaining a positive test for infection, even when you are riddled with them! So when they were able to find, if not the bacterium itself, at least its DNA in my blood, we had undeniable evidence of its presence in my body.

I go to all that trouble of proving I had/have Lyme disease in my brain for a good reason: there is a huge controversy, largely concocted and for political reasons I will not go into, surrounding whether chronic Lyme disease exists or not. Some, the so-called Yale school ie the "establishment" asserts that no such thing can possibly be, yadayadayada and so they set up guidelines for treatment that virtually, no, absolutely ignored the possibility of a chronic form of the infection...In fact they gave no consideration to the question even when setting up the guidelines, did not even look into the research suggesting it might in fact exist. The other school, that is, everyone else, believes the opposite, that either a chronic form does exist, having seen it, or that something else is going on in Lyme, that 3 weeks of antibiotics does not in fact seem to cure it once and for all at all. If you do not believe that this is so, take a look at the charges of Richard Blumenthal Attorney General of CT, who is forcing the Infectious Diseases Society of America, through anti-trust law, to reassess and if necessary rewrite the guidelines, this time taking the chronic Lyme disease research and researchers into account.

Argh, this is so important to us Lyme sufferers, but I think I am digressing a bit from my point...My point? That this week I suffered a relapse of my psychotic symptoms, from which I am only slowly recovering. I still hear some voices -- a woman crying, some singing, hauntingly, with a message for me, other things -- and I feel very weak and sad and even suicidal. Yesterday I wanted to die, plainly speaking. What kept me going was holding on for dear life to the one hint I had that I thought just might be true: that it was Lyme that had put me in this place and state. I knew people were threatening me with the hospital, and that I was suicidal and non-functional. I knew I'd been that way before...And I knew this time, or thought I knew, suspected I knew, what the problem had to be. Dr L, my infectious disease doc had already suggested it when I called him that afternoon, worried that I had Lyme symptoms again.

"No, I think you are herxing from our increase of the antibiotics last week. We went up too fast and you are having symptoms from it," he told me.

Yes, that could explain it. It made sense. A Herxheimer reaction is one that happens in Lyme. It could happen in any bacterial infection but notably in Lyme where when you start ABs or increase them you have a temporary increase of symptoms suddenly once the bugs in you start to die, or so they think. Whatever the cause of the reaction, if your symptoms are physical, as in Lyme arthritis, you have an increase of aches and pain and such, but if your symptoms are essentially psychotic, whoa! So I think that is what's going on, I am reacting -- to be expected, but unexpected by me -- to the sudden upping of my ABs. And the weird thing is, we were upping my ABs to treat break-through Lyme symptoms that were worrying me to begin with!

So for today I am AB-free, and slowly feeling better, but tomorrow I have to start them up again, at the lower dose. I will up them much more slowly. I do want to go to the higher dose, as I do not like having this breakthrough symptom of exaggerated startling...I feel like the infection is just too close to the surface to be really safe. But I cannot afford even a temporary breakdown, certainly not if it produces such extreme symptoms!

You see why I entitled my entry as I did? It never ceases to amaze me how the little critters in my blood can change my emotions and thinking so completely. I will no longer go along with anyone who tries to tell me that there is a psychological component to schizophrenia: I have done and felt and thought too much and too many different things under the influence of 1) bacteria 2) medications 3) without either to not believe that it is ALL biochemistry in the end.

That does not make us less human, by the way, it simply means that we are less "guilty" than we believe we are for our various everyday foibles and follies. Knowing that, we really ought to forgive not only ourselves but each other a lot more than we do...

Picture of me and one recent artwork

I figure some of you might want to know what I look like. So here I am, in my favorite tee shirt and the one necklace -- remade since this photo using graduated real turquoise beads and sterling silver - I won't sell. This is the photo that I believe will be used for publicity for my book of poems.

I know, I know! I'm cheating with the date. But I'm in charge of this blog and I can do ANYthing here. That includes going into the future and writing my entries in advance. So there!

This is a paper mâché lampshade I recently made. I imagine there is not much else I need to say about it! BD

"Money": A Writing Assignment

Warning: If you happen to belong to my Sun Writing Group, do not continue on to the writing below as this will be offered as my contribution to our group this coming Tuesday. Naturally I prefer that you not read it in advance...To all you others, some words of explanation.

First of all, I usually write a poem in response to our writing prompts, meaning the one or two words we choose to stimulate an essay or story or poem -- in one page, no more -- that each of us composes for the next month's meeting. May's prompt was "money" and I struggled with it for weeks, failing to find anything I could write a poem about. Finally, finding the following quote, I gave up and wrote prose: "There is no money in poetry and no poetry in money." Now, this is not strictly true. For one thing, Joyce Carol Oates, a prodigiously prolific writer, wrote a whole book of poems called "Women Whose Lives are Food, Men Whose Lives are Money." But I cannot/could not get through those poems and so never did reach the title poem to know if it was good or bad...Some other poets have written poems about money or with money mentioned. I know. I myself have written such a poem.

FUSION

It was a frying pan summer.
I was playing croquet by myself,
missing the wickets on purpose,
rummaging my pockets for dime-sized diversions.
It was a summer of solitaire.
I laid the cards out like soldiers.
I was in command.

Then you came out
with a mallet and a stolen voice
that seemed to rise disembodied
from the gorge of your black throat
and you challenged me to a game.

You ate me with your mosquito demands
though I, I didn’t want to play with anyone!
I hid my trembling in my sleeves
refusing to shake your hand.
I thought: this is how the Black Death was
transmitted, palm to palm, hand to hand,
a contagion like money.

You smiled the glassy grimace
practiced for boys all summer in front of a mirror.
If I looked you in the eye I would die.

I knew then all the sharp vowels of fear.
It was late in the afternoon
and I was frightened
when our shadows merged.

But just because this poem uses the word "money" doesn't mean it is about money...and I think it misses the spirit of the assignment. Besides, it is twenty years old and not a new poem, not one written for the occasion by any means. And so, I wrote prose, as I said. The following incident did happen, and as Josephine said, laughing, "Exactly like you wrote it!" Well, maybe, maybe not. But I wrote it as memory recounted it to me, and that was the best I could do.

_____________________________________

“Gas is $3.99 a gallon at the Mobil station!” Josephine exclaims first thing on Friday morning when I slide into her car at 11:30. She has picked me up on her way to a cleaning job. She’ll drop me off first at the Hospital for Special Care so I can visit my friend Joe, who has Lou Gehrig’s disease and is on a ventilator.

“Now, at DP’s in Rocky Hill it was only $3.91 but as soon as I crossed the town line it went up two cents. And at your station” – why the guilt or innocence of the town line Mobil has fallen upon me I cannot guess – “it is six cents higher than anywhere else!” She is shouting now but she always shouts so I am used to it. Still, I’m sorry, I can’t help myself and I point out that with a ten gallon tank this comes to all of 60¢ per fill-up. When that costs $40, isn’t 60¢ rather trifling? She falls silent, digesting this.

Still, I can see her point. Pump prices are jumping five cents almost every day, so that 60¢ adds to the 60¢ before it until a fill-up has risen ten dollars since last summer. No one can say precisely why. Is it merely supply and demand? Is it speculation? Or something more sinister? Suddenly Jo changes gears.

“So how’s my pal Joey?” I share the fact that he is now barely able to communicate except by a head nod or eye blink indicating yes or no. Joe pays her to drive me back and forth to the hospital. This is only fair as it takes a good twenty-dollar hour out of her working day and costs her in gas and wear and tear on her car. But in truth, Josephine would get me there by crook or hook, somehow, even if she were not paid. Money simply makes it easier for her, and therefore for me.

On the way home, the gas tank is nearing empty. Josephine has not found a gas station with prices low enough to suit her. She had been certain that in a working class town like New Britain gas would cost less than in highly taxed Wethersfield. But no, to our amazement, we see $4.01 everywhere and in some places $4.05. Josephine shrieks in disgust, “Those gougers!”

“Jo, we’ve got to stop somewhere. The gauge reads empty. Stop at the next place, no matter what the price. I’ll pay the difference between DP’s and here.”

“No way.” She is determined never to take my money, certain I can’t afford to spend a penny on anyone but myself. I’ve pointed out to her that even the impoverished widow wants to share her mite. She doesn’t listen. Nevertheless, we do stop at the next Citgo, gas $3.99, and she fills up to the tune of $43.20, somehow her ten gallon tank sucking down more than it can hold.

Is it BPD or is it Lyme? A personal story

If you have never heard of BPD it stands for Borderline Personality Disorder and I will quote the psychiatrist's Bible, the DSM IV to explain what it is:

A pervasive pattern of instability of interpersonal relationships, self-image, and affects, and marked impulsivity beginning by early adulthood and present in a variety of contexts, as indicated by five (or more) of the following:

1. Frantic efforts to avoid real or imagined abandonment. Note: Do not include suicidal or self-mutilating behavior covered in (5).

2. A pattern of unstable and intense interpersonal relationships characterized by alternating between extremes of idealization and devaluation. This is called "splitting."

3. Identity disturbance: markedly and persistently unstable self-image or sense of self.

4. Impulsivity in at least two areas that are potentially self-damaging (e.g., spending, sex, substance abuse, reckless driving, binge eating). Note: Do not include suicidal or self-mutilating behavior covered in (5).

5. Recurrent suicidal behavior, gestures, or threats, or self-mutilating behavior.

6. Affective instability due to a marked reactivity of mood (e.g., intense episodic dysphoria, irritability, or anxiety usually lasting a few hours and only rarely more than a few days).

7. Chronic feelings of emptiness.

8. Inappropriate, intense anger or difficulty controlling anger (e.g., frequent displays of temper, constant anger, recurrent physical fights).

9. Transient, stress-related paranoid ideation or severe dissociative symptoms.

Now, in Dr O's hospital I fairly recently (about two years ago -- which is recently compared to how long I have been going there) discovered upon reading a discharge note that my official diagnosis, in the hospital at least, had been paranoid schizophrenia, bipolar mixed state (or something like that) and "borderline traits". That last threw me for a loop. What did that mean? And who wrote it? Did Dr O think I had BPD or did the hospital?

This was not an unfamiliar accusation: in St R's and at the university hospital, Lynnie had been told that I "had BPD", a diagnosis she flatly and decisively denied. In fact, when she told them that I was not my usual self, that I was not "like this" at home or when well, that ordinarily I did not have a temper, was known never to yell or scream or be aggressive -- when she told them this, they then decided that I had "acute BPD."

You have to understand that a personality disorder is essentially something you are born with, that may seem to manifest itself in adulthood, but which really begins in childhood, and which continues throughout one's life. As I understand it, being part of one's personality, these disorders are very hard to treat or change and usually it is a matter of learning to deal with them, adapt to them and work with them, rather than actually reverse them.

So to diagnose an "acute" personality disorder is a contradiction in terms and well-nigh ridiculous. It most certainly is torturing a concept that is not appropriate into fitting the person around whose neck you wish to hang it. Acute BPD, if it existed, could be used to diagnose anyone who had a temper tantrum or made a suicide attempt, because those are acute behaviors and apparently anything done once would be fair game. But all that aside, here they were telling Lynnie that while in my normal life I fit none of the categories, except perhaps self-mutilation (and that most likely for reasons that were different than in BPD) , while I was ordinarily even tempered, appropriate, emotionally rather stable and not particularly impulsive, in the hospital I developed an acute case of BPD. And this was so marked that it had to be diagnosed as part of my illness.

She demurred and continued to say they were absurd and wrong throughout. Doubtless she would say the same to Dr O and her hospital. But when I read the discharge summary at Dr O's hospital, this time I myself was incensed. Why? Well, I'll tell you why. Because 1) only women "have" BPD, only women are so dismissed and discarded into such a wastebasket diagnosis; men are taken seriously; they might be called "anti-social" or aggressive, but they would not be dismissed 2) BPD is a diagnosis given to women who cause too much trouble, who are loud or who bother people or who ask for too much or otherwise make themselves a pain in the ass, in other words, it is a diagnosis given to someone a doctor doesn't like very much (this was most certainly true in the past at any rate) 3) it meant they were imputing certain standard interpretations to my behavior that were simply wrong, and I had no way of explaining or clarifying...moreover, they had done so without ever asking me to tell them why I did what I did.

I was particularly incensed when Dr O admitted that she had written the Borderline traits part of the Dx. What did she mean by that? I asked, not a little angry.

"Well, you do have some borderline traits."

"I do? Name them. I defy you to name them."

She looked at the list I'd copied from the DSM IV. "You fear abandonment."

"I fear abandonment. What does that mean? By whom do I fear abandonment? And the symptom is "frantic efforts to avoid real or imagined abandonment" not merely fearing it. Who wouldn't fear abandonment? If your husband were going to abandon you, wouldn't you fear it? That's nonsense. I don't "fear abandonment" anymore than anyone else! Go ahead, name some other trait that characterizes me, that fits me now, when I am out of the hospital, since you say I have these borderline traits as part of my personality."

"You self-mutilate."

"Okay, for the sake of argument, I'll grant you that. I won't even argue what I think does matter, which is the question of why I do what I do. Touché. You get that one. But you wrote "traits" so name me more."

She looked at the list and then put it down. "It's only traits, Pam. I didn't say you had the entire personality. But you do have some of the traits. And frankly I had to write something. It affected your treatment."

I never did find out what she meant by that. I assume that she meant that the staff insisted I had BPD. I can see why they would, because they had no way of knowing, without trusting what Lynnie told them and why should they do that? that I did not usually have temper tantrums or suicide attempts or scream and yell and throw things etc. To them I seemed extremely volatile and on an emotional rollercoaster all the time. Some people were the good ones and others were the bad ones, and never the twain should meet, so I seemed to say. All these things would fit the BPD Dx. So I can see their point. Except that they did not listen to Lynnie tell them that this was NOT me, I was not like this when out of the hospital. All they wanted to believe, or know, was what they saw in front of their faces. So in fact, they did not want to know the truth about me, only the me that appeared on their unit, ill and disheveled and screaming more often than not.

What makes all this so sad and so angering to me is that I did not know 1) that they were diagnosing me this way 2) WHY I was like this when ill, only that I felt out of control 3) that every time I ended up in the hospital at least after Y2K was because I had Lyme disease and the antibiotics were not working or I was not on them at the time.

Even this last time, when was it, in Oct and Nov of last year at "Brook Hill". There I came to realize that it was Lyme that had caused my symptoms, Lyme that had exacerbated my psychosis and put me in the hospital, Lyme that was causing my rages and sudden "suicidal urges." I knew this because Lyme also caused acute dyslexia and a weird sort of extreme startling that made my hands fly up to my chest and made me shriek when someone knocked softly on my door. As soon as I experienced those two symptoms, I recognized the problem and knew to ask for antibiotics...and I also understood where the other behavior and uncontrollable emotions were coming from. But did the staff there believe me, or help me or understand? No. Most likely they too decided that I had BPD, that Lyme was merely incidental or a coexisting condition but not the actual cause of my so-called personality disorder.

This whole business really infuriates me. It should not be so. I realize that hospital staff can't be expected to immediately recognize Lyme as causing someone's strange BPD symptoms. But I think they should listen when a close relative tells them No she is not like this at all. This is not she and you should find out why she is behaving this way...I think they should listen when a patient explains that an infectious disease causes and has always caused these particular neurological symptoms, which cause certain behaviors due to the neurological changes. I believe hospital staff owe it to the patients to LISTEN, not to judge and throw people away just because an illness makes them difficult or even, as I have been called too many times, impossible.

This is the point that Debbie Finn made in her wonderful paper in the Yale Journal Of Humanities in Medicine, I think. That just as schizophrenia will eventually be found to be fundamentally a "medical" illness, whether of infectious or genetic or some other origin (the way the syphilitic insane were found to be, well, sufferers of an STD), so too will other so-called mental illnesses fall before the power of better diagnostic instruments. If Lyme caused both my psychotic and my supposed BPD symptoms after Y2K, who is to say that it doesn't cause them in others, at least in some people? Acutely at least. And if Lyme can cause acute BPD, or borderline traits maybe it could be a model for the real cause of BPD, such that BPD could be taken out of the MI category and might be treated as a true illness with a cause and a cure. No more dissing women or dismissing the difficult.

Mental Health Speech

The following is for those of you who have not yet seen or heard us speak or read my speech as posted elsewhere on the blog. Even so, if you have read the original speech written in 2005-6 and recognize some familiar parts, you will see if you proceed that there is also much that is new. I promise to tell you all about the gala event either later or tomorrow, but for now, I thought I'd post just the speech.

_____________________________________________

I am a poet. Metaphor means more to me than money. Similes make me smile. But sometimes mental illness, for which there is no adequate metaphor, defeats me.

Having schizophrenia in this world is like living, along with three million other people, in a desolate, dark little room with a large padlock on the door.

The room is stigma, the darkness is fear and the lock is ignorance.

I’d like to speak to you today, having been ill for more than thirty-five years, about fear, ignorance and stigma, tell you some reasons why medication compliance is such a difficult issue in schizophrenia and a little about how I began to recover.

Medication. Why on earth would I take medication? Medication meant I was sick. I feared being labeled crazy, I feared the very idea of that label. But what I feared most were the side effects...Never mind what medication did FOR me, I hated what it did TO me. And it did it to me for many many years.

What was so terrible? For starters there was dullness, deadness, lack of motivation, dry mouth, stiffness, shaking, agonizing restlessness, movement disorders....And that was just with the old drugs. Then came the so-called atypical drugs and feelings of impending doom, an inability to swallow my own saliva, overwhelming sedation, a sixty-to-seventy pound weight gain. Is it any wonder that time after time, I stopped taking them?

You know what happened, right? I went crazy again, I mean, psychotic...You are supposed to say, "psychotic" even though I really went crazy. People with schizophrenia are faced with this all the time. Either they refuse meds and stay psychotic or they can suffer side effects that may feel horrendous. Side effects have to be reckoned with or compliance will be zilch, even with meds that obviously help.

The right medications can help, though. My doctor worked patiently with me for five years and through innumerable hospitalizations to finally find a 6- drug combination that works without side effects. It made the difference between chronic illness and recovery. I admit I wouldn’t be standing here to day without them.

But “medication compliance” may be iffy for other reasons as well. Some take medication when they’re scared and psychotic, then stop it once they feel better, only to get sick again. This sets up a destructive cycle into which many have little insight. Other people with schizophrenia don’t believe their difficulties constitute an illness. If the CIA and FBI control me through a microchip implanted in my tooth, how will any pill solve that?

If I hear invisible voices that sound real, and think bizarre thoughts that feel true, how indeed is medication even relevant? The solution is to get rid of the radio in the wall or go to the Middle East, find 22 linguists, and translate Gray Crinkled Paper.

I asked my dentist about my tooth. For a moment, he looked taken aback, but he regained his composure and answered with something like, “I understand you believe there’s a microchip in your tooth. I don’t think that’s possible. I think it’s a symptom of your illness. But I’ll take a look if it will make you feel better.” The technician, on the other hand, passed over the tray of probes then backed a safe distance away. Stigma.

Did you know that stigma originally meant the brand from a hot iron that they’d burn into a wrongdoer’s face as a mark of shame? That’s why many young people won’t take medication. Because it sets them off from their peers. It brands them as different. But all of us with schizophrenia are stigmatized when people mock “mental patients” or “schizos” or imply that we’re axe-murderers just waiting to happen.

Ignorance plays a big role in stigma. Exactly one hundred years ago, Clifford Beers wrote of being locked in hospital rooms and treated with such cruelty he considered it torture. Because of this experience, he went on to start the mental health movement. Much has changed, but much remains to be done.

Beers was wrestled into strait-jackets. I’ve been kept, sometimes for days, in four-point restraints. Do you know what it’s like to be grabbed by a goon squad of who knows how many people, slammed onto a bed and forcibly shackled to it, hand and foot, at times even your chest restrained so that you can barely breathe? If that sounds awful, it is. It is.

Beers later wrote: “In every institution where the discredited principles of ‘Restraint’ are used or tolerated the very atmosphere is brutalizing...[In such places] the gentler or more humane methods of persuasion will naturally be forgotten or deliberately abandoned.”

I suspect in fact that it’s mostly ignorance of better ways to handle things rather than a shortage of staff that has many hospitals still using restraints in this day and age. The gentler modes of persuasion, as Beers suggested, have indeed been forgotten.

The effect of ignorance is also the stigma that keeps us locked away where no one has to see or acknowledge us. Out of sight being out of mind means we can be secluded or restrained. Mayors can clean city streets of us and put us away in shelters, supposedly for our own good. We can be arrested for minor infractions and the crime rate lowered. But someone needs to stand up and ask where we’ve gone. Have we been sheltered or imprisoned, have we been helped or just hidden?

****

In September 2004, voices compelled me to pour lighter fluid over my left leg and set it on fire. I had 3rd degree burns, skin grafts, the whole terrible shebang. February 2005 back in the bin. I’d spent a total of 8 to 10 years in the hospital by then. This time voices were ordering me to immolate myself, a whole body sacrifice to atone for countless sins.

That was it. I’d been tied down, locked in, shot up and kept inside too much to take it easily again. I had to decide: live or die.

One evening, Lynnie visited. She was tired of it all too. She said, “Listen, this is what I tell my patients: You can always go down the old familiar road. You’ve taken it a million times. Why don’t you try something new for a change?” She called this ‘bushwhacking,’ and it had nothing to do with George W. Bush. I could always switch back to my old way. It was always there. But bushwhacking a brand new path for myself might bring me somewhere I liked better.

It’s still a mystery to me why this took. Maybe I just had to be ready to hear it. I decided I would try her advice. What did I have to lose? My newly bushwhacked path was to follow my doctor’s orders and take every one of the medications prescribed me, as prescribed, without skipping a single dose. For a while at least, see where that got me.

This is where it got me.

You know, a lot of ordinary living passed me by in 35 years. I never dated. I didn’t marry. I haven’t held a paying job since early adulthood. But since 2005, when our book was published, I have learned a lot I did not know about how to live in the world. I have gained friends and lost one I loved. I have learned to drive again. I have become an artist. Recently I had a second book, poetry this time, accepted for publication next March.

What comes next is something no one can say. But for the time being alive and well, I look forward to all of it

Life is for living. Today is all we have and all we know. Enjoy what you enjoy; when you suffer, suffer well. Remember – and this is for anyone who has ever taken piano lessons: it’s all in the wrist.

Those are not bad lessons, and you can learn them from the same people once kept locked away in that dank little room. We have so much to teach you.

That’s what I mean, you see. Don’t leave us in the dark: amazing things can happen when the doors open and the walls come down.

"Slime molds" bowl with fake apple

This is one of my newest art projects. The bowl is papier mâché which has been gilded inside with composition gold leaf and painted outside then polyurethaned inside and out for durability. The pictures are really of slime molds, but in false colors.

I've been having a blast making various things out of papier mâché recently. Along with the tortoise and the Decorated Betsy, which you all have seen pictures of, I have made bowls and a bust and am making a "monster" and a lamp and jewelry -- all out of paper and glue and wall paper paste, and/or some variation thereof. I should be writing more but art keeps taking precedence, partly because it is so hard to see to read or write, even if partly beause I so enjoy it. I'd enjoy writing too, if I could see better, but my vision is so wonky -- double and more, that my eyes tire out easily even when they are able to see for a while.

Speaking of which, my friend and optometrist, L, solved the vision problem finally. Not even my ophthalmologist managed to do what she did, though he didn't even bother to look for a solution, just threw up his hands and tossed me out of the office as a complainer...But she took me seriously, didn't treat me as just a "mental patient" and lo and behold found the problem in no time: one eye goes outward while the other goes in the other direction downward. With the expected result: double vision and lack of depth perception.

I had no idea that I was lacking that last. I knew I had to brake the car carefully when approaching another car from behind...but I didn't understand my caution, only that things looked different and I had to be careful. I hadn't been able to define what the problem was until she stated it. Ah, so that is what it is! I see now, I see!

L said the only thing for it was prism glasses and she fitted me for some. We will go to choose some at her office in a week, when I have a ride out there (i saw her at a local office she was temporarily working at, not her own, several miles further away).
I can't wait to see if they really do help, and if reading and writing seem less of a burden once I can see better. It will be a blessing if so, and I am hopeful.

I would write more now, but I need 1) to get a cup of coffee to wake up (though it is evening, I will be taking my Xyrem in a few hours and it will not keep me up past a half hour after that, no matter what I do now) 2) to rest my eyes and take a break.

Tomorrow we have our speech at the CT MHA. I will write then to let you know how it went. And to tell you more about what I've learned about Clifford Beers, author of the very interesting 100 year old "A Mind that Found itself." Truly a classic of mental illness literature and well worth reading, even if he was bipolar not schizophrenic. I highly recommended it, though I would warn you about the archaic-sounding style...Remember it is 100 years ago when he was writing, and they spoke differently back then, had a different style of writing.

TTFN

Disappearing turned out to be a little more difficult...

The "art of disappearing" turned out to be a little more difficult than I thought (referring to my second to last entry and to Naomi Shihab Nye's poem, which I quoted there).

To continue the story, which did not end where I left it. The next day, I got home from the grocery store, where Josephine had taken me, to avoid another episode of paranoia (which still afflicts me despite an extra 5mg of Abilify, though it may be diminishing slowly...) and found a message from Nancy on my phone. She would be at my building by noon, it said, and would come in and we could meet in the dining room to discuss the jewelry I had already made and how much she owed me for it.

No way, José, I thought to myself. You will not meet me anywhere. I'm not getting within ten feet of you...I don't trust you as far as I can throw you, let alone enough to be within scratching distance.

Instead, I decided that when she rang the intercom, I would instruct her to go to the back door of the building, where the double doors were more secure and she she could not easily get inside when someone else went through the door.

To explain, as it was critical to my plans: the front doors are electrically operated and swing open automatically when you wave a fob in front of an electric "eye" -- leading to the situation that anyone following you can get in too, for as long as the door remains open, which is about 30 seconds. In the back, the door is only opened manually, even though the lock operates by the fob as well, so no one can easily follow you, as long as you pull the door shut after you. That's why I wanted Nancy at the back door. I wanted her to stay outside the outside door, so I could place her jewelry bag outside the locked inner door, pull the door shut behind me, then let her come inside and get her bag once I was safely in a locked building.

Well, she arrived at 12 as she promised, and rang the buzzer. I explained in as calm tones as I could muster what I needed her to do, and she screamed into the intercom, "F---k you!"

Ah, so now she was showing her true colors. I sort of thought she had this side to her. But now I didn't know what to do. Did that f--k you mean that she would do as I asked, or did it mean that she was going to get in and come upstairs despite my telling her she was not permitted to? I couldn't decide, and in not deciding, i made my decision, and stayed right where I was...I figured, if I didn't bring the jewelry downstairs now, she would ring again or simply have to come back another time. Either way, she would figure it out, and know why.

OR she would do something like call the police. I wouldn't put that past her, since she had already threatened to take legal action. I sat in my green recliner and thought and thought about what I'd do and say if the police came to my door. I knew they had no grounds upon which to arrest me or even demand the bag of jewelry from me. All they could do was try to scare me into giving it to them and I could decide whether or not to play along...But I didn't want that sort of confrontation, not in my own building where everyone might hear of it.

I sat and thought about the possibilities for about 3/4 of an hour, until I realized that nothing had happened nor, probably, was going to. I relaxed. Then it did. Someone knocked. softly enough, but someone knocked. Probably not the police, I decided, but you never know. W --- field police are nothing if not pollite and do not hammer on doors..."Who's there?" I called.

No answer.

"Who's there?" I called again.

Still no answer. So I got up from my chair and tiptoed to the door. THe spy-eye was covered up with a map so I couldn't look out, alas, but I put my ear to the door. Nothing. "Who's there?" I said, in a normal speaking voice, expecting silence for a third time.

"Evil spirits are here--" someone hissed. I thought I heard someone's clothing rustle, like Nancy was still standing there, not leaving. This scared me.

"You are not allowed in the building. If you don't get out NOW, I will call the police." I said.

But I didn't mean it. I was just trying to scare her. I didn't know what to do, but I didn't dare call the police, I didn't think. What I did do was call the office downstairs. Unfortunately, it was Saturday and only the answering service was on. They told me they would take a message, but the building manager would only get it on Monday and if I was scared I should call 911.

I thought about it and finally, after trying to call Lynnie (no answer) and Karen (absent, away in NYC) I decided I had to. The police answered immediately and said they would send an officer over in 5 minutes. We are a very small town, you see, and our building, housing elderly/disabled, is visited by the police and ambulances regularly, so the police recognized the address and they are never very far away.

When the officer came, I explained what had happened, and he said he would have taken the bag and driven it over to Nancy, but for the fact that no one had any idea where she lived, and she did not answer the phone to tell us. He called her then and told her that I would be happy to return the jewelry if she came over and followed my instructions, but she had to do that as I was scared of her and did not want to be in the same room with her. Then he left and I thought all was resolved except for her call back or her second arrival.

Instead, I waited until 9pm that evening, when I got a phone call from the police once again. This time a different officer asked me if I was willing to give back the jewelry...as if he knew nothing about the original call from me. As indeed I think he did not. I said, I would like nothing better. "Will you give it ALL back?" This was an insulting question, I thought, but I answered it with, "Not only will she get all of it back, but I am including a necklace I made and earrings, using my beads, free of charge." He made a noise that sounded impressed, but I didn't care. I just wanted the call to end and for him to come get the damn jewelry. "Did you fix her jewelry?" he grilled further, as if I were her employee and had stolen it. "Excuse me, but she didn't PAY me..."

Finally, he came to my apartment and I said to him, before I made any move to give him the bag of despised jewelry, "suppose she spent a long time telling you how wonderful and good she is, and how terrible I am..." He shook his head, but I didn't believe him. I handed him the bag. But I also explained my side of the story, a little, but I was so tired I didn't really care if he understood or not. I told him that I'd separated every necklace into a 2" by 3"plastic bag. I did not however tell him I had given her the jewelry I'd made her to teach her a lesson about real generosity (which she evidently, for all her talk talk talk about her acts of charity, did not understand) and about turning the other cheek...

Of course, I wasn't really "turning the other cheek" because to do that I'd have had to invite her to abuse me further, and I was trying in fact to avoid that. But I was letting her have something I'd made free of charge, which she did not deserve, which felt to me like...Well, you get my drift.

Sorry for that digression. IN any event, my tale is just about told. All I can say is that I found out that Nancy had actually called me 5 times to threaten legal action, the day before. The thing is, she had called Karen's number, not mine, so Karen had complained to a friend that she was being harrassed by Nancy and had taken her phone off the hook before she left for NYC. When she got home, she too wanted to return various items to Nancy, and in order to do so, called the police herself. She had it easier, because of my experience, and did not let Nancy get the final say, but forced her to come get her items, which she left in the foyer with the police at a certain hour, without waiting for a phone call back or a more convenient time for Nancy...

The only "good" thing to come from the whole thing is this: Nancy's reaction to Karen was an unmitigated, "She is a pathological liar, can't you tell?" This confirmed what I had feared and felt all along. Now I can trust my instincts more and also distrust Karen and what she tells me more freely. I don't tell her this, I just feel better about taking everything she says with many grains of salt, if not discounting them altogether. I don't necessarily distrust them immediately, because I tend to trust what people say in general at first. (At least certain things, certain times) But afterwards, I am learning to doubt the veracity of things that don't quite fit the picture of what I suspect is actually true...

So all's well (?) that ends well, though I wouldn't say all ended very well at all, nor that the lessons I learned were very good ones, either about Nancy or about Karen.

Forgive me if I do not proofread this tonight, but it is 11:30 and I must go to sleep as the visiting nurse comes at 7:30am and I cannot get less than 7 hours sleep (I won't fall asleep for an hour yet). TTFN

RE Comments on PARANOIA OR REALITY

Thanks for the comments. I did talk with Dr O and she pointed out that Stop and Shops do not have security guards in the first place, and certainly not young women with two dogs and walkie-talkies. She said that the spies were most likely shoppers and that I probably scared them but what really scared me most is that she observed that had any of them really been worried about my behavior they might have gone to a store manager and had him or her call 911, with predictable consequences -- EMTs or police and a trip to the hospital. I would so want to avoid that! But it never occurred to me to doubt any of my experience, not at the time. Even now, thinking back on it, it still feels like reality, though I can think it through another person's eyes and see how they might see it differently. But my feelings are still that the "shoppers" were spies, just dressed like shoppers. The one truly felt insight I do have is that I can fully understand that Stop and Shop does not have security guards, that is a fact. So the teenaged girls must have been talking to one another, as girls tend to do. They weren't communicating to the store then, even if they were talking about me. The girl may have been miffed about me, and telling her friend about it, but they were not telling the store about it...I dunno what to think about what happened inside the store, except to try to believe what Dr O and you guys tell me: that the spies were just shoppers, and that I was the one actively scaring people, not the other way around.

I went shopping today again, but this time at a different store and with Josephine. It went a lot better. No trouble at all, in fact. I usually am fine as long as I am with someone else and they stick close by as Josephine did. If she had wandered, I would have been at risk, but she didn't.

Disappearing is an Art and Other Thoughts

In the poem by Naomi Shihab Nye called "THE ART OF DISAPPEARING" she writes:

When they say Don't I know you?
say no.//

When they invite you to the party
remember what parties are like
before answering...//

It's not that you don’t love them anymore.
You’re trying to remember something
too important to forget.
Trees. The monastery bell at twilight...//

Walk around feeling like a leaf.
Know you could tumble any second.
Then decide what to do with your time.

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

It was with the final stanza in mind that I decided not to continue to try to be friends with a person(Nancy) I recently met, a high energy woman with a tendency towards wildly swinging moods, who 1) talks way too long on the phone, 2) talks only about herself and her own goodness and the worthiness of her charitable works 3) is unreliable and unpredictable and when she visits stays far too long 4) wants me to "enhance" dozens of pieces of cheap costume jewelry, would pay for it, yes, but it is really cheapo plastic stuff that I could not easily enhance except with equally cheap beads...

Nancy tended to talk and talk and only about herself for an hour or more on the phone, interrupting me every time I tried to speak, and I as usual had no ability to simply call her on it. Instead, I felt that I should listen to her, humor her, agree with her, sympathize with her...she who had asked for a free copy of my book, started it, then proceeded to tell me she couldn't be bothered to read it, so had skipped to the end and read that as a substitute! Of course, I said nothing in objection. I felt only that I was wrong to have expected her to read it. Of course, she shouldn't read it! She is far too busy and important to want to find out about me...Why, doesn't she tell me so every time she talks?

But let me quote what I wrote in my journal last night: " I had a major disagreement with Nancy today. I don't even remember how it started except that she ended some comments by essentially saying that because of meeting me (not in so many words but that was clearly what she meant) she would never trust anyone again. She would do her charity work yes, but not believe in anyone's fundamental goodness from the start. She was partly referring to Karen in this, because I had referred her to Karen as a person who might answer the phone for her, that being K's forte. But Karen it turns out is in fact a pathological liar, which I only now have understood from interactions between the three of us...

I nevertheless said to N, "You will not..." meaning that she would not stop trusting people just like that, in essence challenging her, not believing her histrionic statement.

"Oh, yes," she assured me, "My faith in people is completely gone."

I wish I could remember all of what she had been referring to, because it was not all Karen, some of it was that I had told her I myself feared she was a con woman, that her so-called charity work could be a con for all I knew...I told her I had a tendency to be paranoid, and that I had been taken in by people doing exactly what she was doing (collecting "donations for those less fortunate than others" -- and after all, I gave her many, many items of my own) and that since I had seen nothing but her and her brother putting things in a van, what did I have to go on? But I'd also explained that it was my problem, that she needed to do nothing but go on being herself, and that if she was on the up and up, well, then, I would find my trust rewarded not blown away...Anyhow, she clearly took this as a mortal and personal insult and made it her problem, not mine (perhaps not the most politic thing I could have confessed to her, but I had to put it on the table, frankly, or I'd have gone on assuming she was simply a con woman!). Also, another of my sins according to her was my telling her I would not be the middleman between her and K, who were themselves fighting, in addition to originally suggesting K for the telephone job.

Sorry if this is confusing, but it is hard to reconstruct from memory and stil explain it in some cogent fashion...

At this point I'd had it with her self-righteous and histrionic diatribe and I pointed out that she was kind of full of herself and was always talking about herself and her own goodness...etc at which point she then said, calmly, "Let's talk more when we are both less upset, shall we?"

I thought that was a good idea, and we hung up. But I later discovered she had no such intentions as she later left a vitriolic message on my machine, accusing me, threatening that if I "kept her jewelry" she'd take it to the "next level". Huh? Then a second message explained, in equally truculent tones that she was sorry to do this to a "paranoid schizophrenic, but 'next level' meant legal recourse"; she would bring the issue to her lawyer!

Now, as an aside, I have to tell you that from my bitter experience with that Chaplain, the pathological liar, Holly, to whom I gave so much money and so many things, and about whom I eventually went to the police, I learned a few things. One of which is that if you voluntarily give anything to another person, the police (lawyers are not police, by the way, they cannot compel one to do anything) can't force that person to give it back. It was given willingly, not stolen, and no crime was committed. Just so, this jewelry...Frankly, it would be her word against mine if it came down to that. IF i wanted to keep it, which of course I have absolutely NO interest in doing.

That said, I calmly called her to tell her I had no such intentions and would return her precious materiél at the earliest possible time convenient to both of us. In fact, I neatly packaged up all her necklaces in separate plastic bags and even donated to her the necklace I'd made out of her and my own beads and a couple of pairs of earrings I'd created that she'd asked for...Free of charge, though why, I dunno. (Yes, I do. Though they were more expensive than she deserves and worth more than any of the jewelry she currently owns, I wanted to make a point about turning the other cheek and generosity to those who injure you...) All was carefully placed in her overnight bag near my door awaiting her call. When she finally takes it, I hope never to see her again.

But that is my point. I was hurt at first, and disappointed. I felt like I was losing the chance at a good friend. Then I reread the poem by Naomi Nye, which a better and slower-to-develop friend, Jennifer reminded me of just today. Reading it I realized that NOT every high energy, engaging person who comes my way needs to be taken in and befriended. Some should in fact be avoided, or greeted, treated courteously, then shown the door.

This "relationship" if that's what it was, surely not a friendship yet, with Nancy? Well, thinking about the end of Nye's poem, it is NOT what I "want to do with my time." Nor is "enhancing" costume jewelry. I was pushed into it, lured into it even by the notion of making a little extra income, and also by Nancy's enthusiasm. But I am always attracted to enthusiastic, energetic people, who almost always then proceed to walk all over me, misunderstand my own lack of stamina, and demand more time of me than I want or have to give. I suspect that Nancy, despite her busy schedule, would be like that. And when not enthusiastic and up, would be down, down, down and just as demanding then. K may or may not be right in saying Nancy is bipolar. Nancy insists it is merely her brittle diabetes and wildly swinging blood sugar talking, but she is nevertheless way too unpredictable and moody for me.

No, I need people with Joe's calmness and even Karen's rationality to deal with my craziness...Even Josephine, who is by no means unemotional can be with me better than Nancy, who is so self-involved she has no time for anyone but herself (this despite her self-avowed dedication to charity work). In any event, I do need calm people around me for the most part, not Nancy's hysteria all the time. I do not need her to drain me of time and energy or need me to listen and constantly placate or agree or flatter her. I do not need someone in my life who is so convinced of her own virtue she talks about nothing except that. To the point of telling me how she donates money to people-- "anonymously...It is "between God and me, so it remains pure."

(Huh? If it is so damned pure, why are you now boasting about it to me???)

No, I should say to her, No, you do not know me. No, I do not want to attend your party. No, I do not have the time. I want to do other things with my time, not listen to your self-aggrandizing tales. If you are so good, let God reward you. You need none from me and I have nothing to give you. I'm just a poor struggling soul like anyone else, fighting to keep my head above water and the demons at bay...I do not need you in my life. GO AWAY.

My calendar and my life!

I'm totally overwhelmed with busy-ness and need to slow down. As you can see, I've had maybe Sunday off these past two weeks and I am virtually certain that I simply forgot to write in that day what I actually had scheduled. I have not had a truly free day to myself in a long time.

That said, I am working on an entry to post here, which I should be able to put up by tomorrow if I keep at it. In the meantime, know that I am here, just swamped and overwhelmed!

Paranoia or Reality?

This is what happened when I went shopping a day or two ago. I understand that many will say it is “paranoid” but I believe it did happen as I describe. Go ahead and read. See what I am talking about. Make up your own minds.

_______________________

I pulled into and through to the other side of a parking space at the Supermarket and came face to face with a young woman with 2 dogs and a wrist-held walkie-talkie, who looked a bit miffed. She stood to the side then walked by another way. I got out of car feeling like a big bruiser for “almost hitting her” though I hadn’t even come close, and went to do my dreaded shopping. As I approached the store, I came across other young women with 2 dogs each and wrist-held walkie-talkies...How strange I thought. A new kind of Supermarket security?

Inside, I was going to get some fruit and produce but for some reason felt too uneasy to get the fruit and went directly to the vegetable section to get just the things on my list. I needed carrots and eggplant and potatoes for the dish I was making for the Passover Seder at Cy’s. I found the potatoes and picked out three large ones. Suddenly, I noticed a man in a thin dark bomber-type jacket and dark green trousers standing close by, watching me. He walked away and half way down the aisle watched me from there. He talked to some woman for a while, then, as I got an eggplant, pretended to shop for dried fruit, keeping an eye on me all the while...I realized with a jolt he was a SPY, and he was monitoring my every move, trying to keep me from doing damage in the store. He started subliminally telling me what to buy and not to buy.

By this time, I was terrified and gave up trying to get carrots. It was impossible to stay in Produce a moment longer. The only thing I absolutely had to get, and it would take me away from the man in the green trousers too, was yogurt. This was essential as it helps me take all my morning pills. So I took off, leaving Produce. I headed towards the milk aisle. As I passed Green Trousers, I said to him, “You spy! I know you are spying on me!” Then I raced away. I felt terribly exposed as I pushed the cart across the store, talking to myself the entire way to give myself courage. There was another spy the first had handed me off to! "Spy!" I accused him, as I rolled my cart across his path.

At Dairy, I picked up 2 quarts of vanilla yogurt and once again made the long trek cross-store to the registers, but ran across more spies in my approach. I told them I knew who and what they were too. Each time I realized they were following me, monitoring me, I was filled with fear and dread. I needed other items but was not allowed to purchase anything else on my list. The whole situation scared the bejesus out of me.

Finally, at the registers, I dared not wait in line for a cashier. Instead, one of the very few times I've done so, I decided to use the automatic check out, which was empty. I managed to work it, much to my amazement. The only problem was that there was an impatient customer who came after me and rushed me when I was trying to get my few purchases into net bags after paying...I knew then he was a spy too. EVERYone was staring as I headed out of the store, and 2 more spies were waiting for me at the door. I hissed at them, “I KNOW who you are!” Then I was free, out of the store and in the clear.

But outside there was too much talking and music and buzzing and humming and NOISE NOISE NOISE! The world seemed to be made of all this noise and hubbub, so much that I could barely see what I was doing or where I was going, could hardly think for all the noise inside my head and outside my head. I got to the car, but thought, How can I drive home with all this noise?!

Suddenly, as if something popped. It ceased. It just stopped. The noise and the talking and music and buzzing ended and there was quiet again, normality. I could hear and think and see as I usually did. I don’t know what happened. I couldn’t figure it out then and can’t now but I got in the car, wary of the girls with the dogs and walkie-talkies, and drove home (with difficulty as my vision was very double, due to it being late twilight and hence much harder to see to drive than during daylight hours...)

__________________

I know the girls with the dogs were real and the man in the green trousers was, and the other spies...so what was paranoid? Just the fact that it sounds “paranoid”? I have complained about this before, I understand that. I see that. But, but...PART of this experience above was real, NOT paranoia. I feel certain of it. Maybe they weren’t ALL spies, but some or one of them was.

Update Et Cetera

Last week I called a woman Karen had run into at Office Depot who runs a small operation collecting used items from people who are giving them away and donating them to homeless families who are just getting established in apartments. She, and I, agree that this is a much better way of doing things than donating to Goodwill, where they simply resell everything. Though in fact I think Goodwill is not bad either, since many lower income people will buy from a thrift store but would not accept charity outright, so Goodwill's donations are actually very helpful.

Be that as it may, Nancy not only accepted and hauled away several items, including a large "chair and a half" that was taking up too much room in my small apartment, but offered to find me something upon which I could rest my TV, which at the moment squats on my dresser, having no other place to put itself. She also "donated" to me some much needed heavy duty "push pins" she just happened to have bought herself that she didn't need. I like the idea of second hand goods getting shared around: it is a good way to reduce one's "carbon footprint" on the earth, and not consume anything extra even when acquiring something one needs. Just so I got rid of a large chair and a table and many other things that I didn't need, and thereby ended up with my bed in my living room, acting as a sofa/day bed, and an art studio finally in my erstwhile bedroom.

The arrangement has proven beneficial in other ways as well, seeing as how it forces me to make my bed every morning, since I need to have my sofa available by day! :) The next project is to actually organize my papers and "stuff" so that I know where various important things are...rather than having to frantically search for things at the last moment as I usually have to. I don't have a particular place, for instance, for all the various manuals things come with, so those are scattered in who knows how many places, and I can't find any particular one at any given time...it is merely catch as catch can, and hope that I can find the right one when I need it. Ditto my car and apartment insurance papers, or my various Medicare and Medicaid papers...I have those in a stack with other important ones, but nothing is actually organized, so, every time, I have to go through the entire pile just to find the single paper I need. Not the best way to go, I assure you.

I do have a friend to whom I have taught jewelry making and will do so again, who has offered her organizing skills. I think I will take her up on it next time I see her. Maybe we can spend half the time on jewelry and half the time on getting me ship- shape a bit more.

An update on Joe: His ability to use the letter board is nearly nil. He can no longer point to the letters at all. Instead, we must hold the board over his fingers and try to guide it to where we think he wants it to go. So if he tries to point to K, I say Karen? And he nods Yes. Then he might start by pointing to "w" and I would say"wants" and he might shake his head and I'd hold the letter board over his hands trying out other letters: "a"? No, "i"? No. "o" Yes. Hmmm, what next? "U"? No, "r" Yes. "work" Yes "works"? No "worked" Yes, Yes. And so forth...It can be exhausting for me, but it is far more exhausting for Joe, and frustrating for all of us. Half the time I don't even get most of what he wants to say if he tries to truncate it...That's because he always insisted before in saying every last thing, refused to abbreviate. So now I assume he is NOT abbreviating, when in fact he is. Case in point was yesterday when they brought in 3 Burmese Mountain dogs to visit. I put his hand out for them to nuzzle, which he seemed to enjoy, and after they left and we were "talking" he spelled, "dogs on bed." Huh? "dogs on bed" "What dogs on bed, Joe? There are dogs on your bed?" The nurse didn't understand either. Finally we came to understand that he wanted the dogs to get onto his bed the next time they came...But only after much struggle and misunderstanding. Karen understood immediately, when I told her about it. But she had already seen him with the dogs on his bed, so knew exactly what he was referring to. Anyhow I felt like a fool...But it doesn't matter, except that when I did get what he was trying to tell us, he told me, No, that isn't what I mean! until the nurse asked him the same thing, when he said, Yes, that's it!

So I felt doubly like a fool...Who cares, it isn't a big deal. But I dunno, it was such a struggle to figure it out, and then to have him simply tell me No, you failed, you failed...It ...Oh, forget it, forget it!

Nevertheless,. he does need that ERICA device, the Eye Response technology, so he can actually speak through it again. This whole spelling business is simply not working any longer, and the longer it goes on, the less he is going to be able to communicate at all. He needs ERICA or the version of it that accounts for drooping eyelids and he needs it yesteday. But if the hospital is predictable, it won't come any time soon. I was afraid this sort of situation would develop. They told Joe a week ago that he would have use of the hospital's old ERICA, at least until his personal version arrived. But so far no sign of it. He hasn't even had a chance to try it out more than the one time. They brought it in a second time, yes, but wouldn't let him even use it. So why they brought it then I do not know. Oh, it is so frustrating, and even frightening, knowing he is approaching the point where he could be effectively locked in, unable to communicate, except by blinking or otherwise replying to yes or no questions. Even now, he can no longer talk on the phone, because he has no strength to tap the bell.

In contrast, Cy seems to be getting along better than anyone thought he would. So far. Leila and her partner just left for their road trip so I don't know what things will be like for him now that he is alone, but he still gets a lot of visitors, and I doubt that he will spend a great many days entirely on his own. I cannot see him much this week, as I am swamped to the max with duties of my own. But I will see him on Saturday at the seder, and next week looks much better in terms of visiting. He still cries when I ask him how he is doing, but when I don't bring Lynn up, he seems to do fine and can be persuaded to take walks and to get out of the house much more easily. It has been a month since her death now, and he said he needed that month to give himself over to grief, which I think was fair enough. I think he should take the time that he needs! But he seems to have been able to pull himself together in that time, and to be recovering okay. At least he no longer talks about wanting to follow her. When he did I simply reminded him that I needed him here! He acknowledged that that might be so, and didn't try to press the case for his imminent death any further.

I don't think it helps him to wallow in those kinds of thoughts, frankly. So if it takes my having to pull him back, tell him he can't go that road because I need him, then I will. He doesn't really want to die, I am sure of it, I think he is simply certain that he should not want to live, now that his beloved is gone. That he is not honoring her memory if he continues to live with any kind of contentment or happiness. But he can and should. Lynn would want him to. And so I don't let him get away with self pity or wallowing in thoughts of following her to the grave. He is 88 and death will come of its own accord soon enough. For now, he is healthy and I believe he still enjoys life. He doesn't need to feel guilty for that.