WAGblog

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 D Finn made in her wonderful paper in the YJHM, 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.

Two invitations and some thoughts...

For the first time in twenty-two years, I have been invited to the Passover Seder held by Lynn’s family. (For you Christians out there who do not know what a Seder is I can only say that it is thought that the Last Supper of Jesus was a Passover celebration and Seder meal...). I thought I would not be. Especially not after going out to dinner with her husband and Leila and a couple of other people I did not know, and having him invite those two to the seder but ignore me entirely. That hurt; I had always thought I was not Jewish enough, my mother being Christian, to be invited to their seder or indeed any Shabbat evening meal. But now he’d invited a Lutheran minister and chaplain! I knew another guest was the hospice nurse, a Catholic nun... So why was he so reluctant to include me? I frankly did not want to think about it. But of course I do, considering all the many terrible things about me that might cause him to reject me or not want me at any meal he shared with other people. It also got me thinking...Other people in fact are what I never ever saw when I visited him and Lynn at their house. Never, until the end of Lynn's life, did they have anyone there when I came, nor did they invite me over when someone else was there. Even when their own family was home, their son Danny had to come visit me at my apartment. I felt like I was not allowed to go there. That seemed to be understood...I never met a single friend of theirs, though they spoke of many. I do not know why. Were they trying to protect me, or themselves, or others? Why? Most of the time I was or seemed fine with them, as I rarely evinced any problems, not to them, rarely shared any difficulties, went out of my way NOT to tell them anything was wrong for many years...So why would they want to exclude me for any of the above reasons? I certainly did not behave in any bizarre way at their house, I do not think....I managed mostly to keep that to myself, or not go over there when I could not behave completely normally.

As I said, I cannot let myself think too much about that...They were always very kind to me, and it will only cause me pain to delve too deeply into the deficiencies of our relationship. I was not all that they could have wanted either, I am sure, and therefore they must have had to make compromises in how they dealt with me, just as I did with them.

Still, I enjoy spending more time with Cy these days. I find I can be more open with him now. I think I am always more comfortable with one person at a time than with two or more, which is unfortunate because with Cy and Lynn you mostly had them together. But it is hard to pay attention to two people at one time, or to know what both are thinking and to attend to both equally...and I had to stay vigilant to both at one time. It used to drive me berserk and I hated having to do it. That’s why I remained just social with them. It was impossible to trust either of them very deeply, because I could not learn who each one was, not without being alone with each one, and I never had that chance until Lynn and I started sneaking out and smoking together...What a terrible pity. And now, with Cy, the same thing, but only after a sad event has separated him from the woman he loved above all else.

I have had another invitation. This one to my publisher’s annual poets/writers get together. We are supposed to bring 2 poems to read out loud and generally enjoy ourselves. But I can’t drive myself there -- much too far away in NJ -- across 2 states. And I couldn’t possibly go alone, knowing no one! So I don’t see how I can go at all, since I don’t have a husband or significant other to take with me, as the others most likely do…Lynnie suggested I tell them I need a ride, expecting them to provide me one, since they did invite me there and they know I have this disability...But I did not do so. Partly because I think they would not, but also because I fear they would ask another writer to give me a ride and I do not trust they would not find me someone who would drink too much or drink at all and then drive...And then I would be forced to go with them or be stranded!

I don’t think that Dr O can accompany me (she is on vacation that week or away I believe) nor that she was invited, not being a poet or principal writer. If she could have it would have helped, but no, that is not to be either. Which brings me to the two other problems that also oppress me

One is the simple but not so easy question of what to call Dr O when in a situation with the publisher or in public, say at this get-together etc. I feel like a child calling her Dr O...and yet she has never given me permission to call her Mary. I have decided, though I suppose I should tell her, that I will simply call her Mary in those circumstances. It is ridiculous not to! But I resent that she has not simply told me to. Everyone else calls her Mary and here I am calling her Dr O. It is simply absurd...They must think, damn, who knows what they think. But I feel silly. Yet I do not know what her reaction would be, as if I were intruding or trespassing...Oh, it is so ridiculous!

And then there is the final issue...a brand new one for me, one I haven’t considered since 1979 when I left medical school: I want to start seeing Dr O -- Mary -- only twice a month instead of every week. I would increase that when or if I need to, say if things got worse or in a crisis, of course. But when things are going so well, why should I keep going so often? It is so expensive, and the money could better be spent elsewhere right now. Besides, I need the time to myself for other things -- visiting Joe or Cy or friends, or doing sculpture or writing--, and to go down there every week entails a good four hour trip plus the waste of an entire morning and early afternoon -- just for the preparation and then the travel back and forth...Plus, I get exhausted by the trip. She has been away a lot these past months so in a sense I have had a chance to test it out perforce, and I have done fine. I don’t doubt she would agree! And I think she would also agree to a trial of once every other week. I just don’t want her to think that...Ah, Josephine, my driver and friend whom I may or may not have mentioned before, says she is a professional so I needn’t worry, and she is right. She can take care of herself! As if she needs me!!! I am the one who thought I could not “get along” without her...Wouldn’t she be happy to find out that I can? That is the whole point of therapy, after all. To grow beyond it. After 20+ years, shouldn’t she and everyone else be glad?

Maybe it is I who am afraid after all. But I do want to cut down, fear or not. And I plan to talk about it if not this coming Thursday by phone, then the following Wednesday when I see her in person. It’s time, it really is.

Lemon and Peach

A Different Fruit Bowl

This is my latest art project-- a papier-mâché fruit bowl. What can I say? It speaks for itself, I suppose! (I can't get the photos of all the fruit together outside the bowl or that of the banana and the strawberries to upload, alas...)

Red bowl with black lining

Pear and Apple

grapes and watermelon

Two New Poems

Joe is losing function in his hands, can barely lift them to use the alphabet board to spell any longer. Unfortunately, he has not arranged to have an eye operated speech-generating device on-board (I had urged him to use his mother's trust fund to purchase one months ago but for various reasons he balked) and so it is difficult for him to communicate more than his most basic needs...Now I still don't know if he will buy one or use the one that rotates through the hospital at intervals and do without it more often than not. It makes me want to scream with frustration, that he has the money and will not spend it (his mother is the same way), would rather die or become utterly locked in...Especially because I know how much Joe loves to talk, how much he values a conversation!

That said, the following describes a real incident. Lynnie and I used to billow sheets over each other's headswhen we were kids, in order to induce otherworldly experiences, but in this case I did it in a shallow fashion in an effort merely to generate a breeze and cool Joe down!

RELIEF

Ten days after my last visit
and your hand can’t hold mine anymore
but only accept my fingers around your palm
until suddenly you need your own to speak,
struggling for the letters on the board
spelling in a panic of discomfort: Hot.
Your eyes clench and that’s when I panic too,
feeling the heat, wanting to heal and relieve...
But how do I cool you when already
you wear only a thin johnny? I lower
your one cotton blanket a modesty’s worth
but no modesty’s worth the sweat beading up
on your forehead, your face in a grimace.
Tell me then, spell it out, what do I do?
It’s an order I don’t expect you’ll obey.
But somehow, you manage, Keep the sheet.
No natural nurse, but finally I get it, separate
sheet from blanket and billow the sheet
several times for a breeze. It’s a breeze
to make you smile now and your smile is all
the relief I need and that billowing sheet
of a feeling that makes my day.

This next poem was written in response to seeing a photograph of paleolithic cave paintings of horses deep in certain French caves. The animals were so well drawn it made me wonder...

PALEOLITHIC

It was cold back then, even in the south of France;
everyone lived in caves, hunting and gathering in
for the daily grind or idyll, depending on how it looked.
But no matter how you look at the graceful horses depicted
in Chauvet cave, you know the hand of a master
-- generations of artist teachers-- someone with both skill
and the practiced love of horses and drawing horses put
these down with a sure eye. In the 21st century
in the 20th at least, in my childhood back in the 1950s
this would best be exemplified by those whose horse-love
could not be surpassed, nor their dogged persistence
in picturing them until the life of each one scintillated
in every detail. Which is why, when experts suggest
male shamanistic origin behind these animals, I say,
No, she painted them, one paleo-pre-adolescent Cindy,
Sheri, Carol, Marilyn, Andrea, Kerry or Michaela
like the girls in my 6th grade class, distinguished
by their horse-mad eleven years, who could never draw
a polygon to pass New Math or save their lives
but in one minute straight sketched the perfect Lipizzaner.

New Poem - Self-explanatory

HUSBAND WITH WIFE, DYING

(In her final illness, a friend kept mumbling she was on a journey
but somehow she could never remember the destination.)

Thirty-six hours up and he’s slurring words
demanding grits instead of sleep,
afraid she will die if he closes his eyes.
For if he closes his eyes, sleep will take him away
from her and every last second of her last hours
counts, wresting from fate a moment’s victory
over the plot in the cemetery they’d planned to share.
He wobbles on Xanax to her bedside
and leans half over her, precarious, bent from the waist
to bestow his kisses. But oh, he is so sleepy
he threatens to topple on top. We hold our breaths
and breathe again only when again he is seated
at the foot of the bed with hospice
attentively taking his blood pressure
which is much too high even for a grieving man.
Sleep, the family begs, but no, he deliberately
fends off unconsciousness, knowing the dangers:
if even once he allows himself the luxury
she could leave him on the next plane out.

The "Singing Scientist" and Nirvana Within

I just saw the most amazing 18 minute on-line video

http://well.blogs.nytimes.com/2008/03/13/when-a-brain-scientist-suffers-a-stroke/?em&ex=1206590400&en=a982aa9cdd7ef0d4&ei=5087%0A

at the New York Times website that I strongly urge everyone to take a look at. NOTE: the following radio interview is longer -- one hour -- but much more complete and more spontaneous, being older and therefore less rehearsed and polished than the video above:
http://www.drjilltaylor.com/resources/profiles-jilltaylor.ram

Jill Bolte Taylor, whose brother suffers from schizophrenia, is a neuroscientist who herself suffered from a massive left-sided hemorrhagic stroke (that is, bleeding into the left side of the brain) about eight years ago. During this stroke, she was able, at least at the beginning, to observe herself experiencing the brain event as it was happening: Here I am, a brain scientist and I'm having a stroke! This is so cool! And because of her training, she understood which side of her brain was functioning and how to erxplain her experiences, at least after the fact. One of the things that was so striking, to her and most certainly to viewers, is that with her left brain out of commission, and her right brain, or right hemisphere, almost completely "in charge" she felt a kind of oneness with the universe that her connection with the left hemisphere had always prevented. She explains on the video that the left hemisphere is what gives us the sense of an ego, an I, and hence the sense of separateness, which the right hemisphere by itself has no sense of at all. THe right brain, by contrast, is in tune with the oneness of all things, is expansive and universal.

Her point is that we need to access our right brain sides more, all of us. That whatever the state of ecstasy she experienced when "in" her right brain, whether you call it nirvana or simple peace or something else entirely, it is worth cultivating in everyone, and between all of us. It would foster fellowship and fellow feeling, and a sense of mutuality and interconnectedness with all people and indeed with all things, which is precisely what the world needs now.

I cannot possibly do the video or Dr Taylor's talk justice with this brief squib. It is filled both with humor and with emotion and it is just plain riveting. But take a look at it and then check out the book, MY STROKE OF INSIGHT, if you are interested. Also take a look at her website. http://www.drjilltaylor.com/index.html

For those of you who are followers of my particular saga and are interested in how I reacted to the above, continue on below.
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For some reason, I felt particularly bad after seeing this video...Oh, I was riveted, just as I promised all you readers would be, and as you probably were. And in some sense I was envious of her having had such as "marvellous" experience, though of course, not really envious, because it was within the context of such a truly dire and life threatening event. But what so "depressed" or worse, made me feel more evil than ever, what made me feel that I am...Wait a minute. Did I misunderstand entirely? The issue as she explained it was neurological, not good vs evil. The problem was access to left vs right hemisphere. I had felt evil, because I felt separate and unable to connect -- to anyone or anything. I have NEVER been able to truly connect to anyone, to truly care enough to MISS anyone after they leave...I do not miss Lynn even. I barely remember her! She is simply gone, and if not forgotten, well, absent and therefore somehow, not present, no longer a presence in my life. But I do not miss her...Why should I miss her? She is no more gone than she would be if she were in Australia...and I wouldn't miss her then! I never did miss friends who moved that far away, so why miss Lynn? But that is what I mean...I am or feel evil, because I do not feel connected enough to need people or want them near or even miss their presence. I do not miss hearing from them or seeing them...I, well, my point is this: according to Dr Taylor this could be due to an excess of left brain control and a lack of access to my right brain (if I understand her even rudimentarily). That my lack of feeling connected to other people has nothing to do with good versus evil but only with my relative reliance on my left brain versus my right brain, perhaps even with how much blood flow or brain tissue one side has over the other...Of course, it is more complicated than that, I am sure, but perhaps not, perhaps it does boil down, in its simplest terms to something like that.

But nothing to do with the brain is ever that simple. That has been shown time and time again. We used think, having been told, that the "right brain is creative" and the "left brain is logical" but it turns out this is not strictly so, because what about language and writing, which is...well, which is focussed on the left side, but if it is fictional or "creative writing" what then? Where does it come from? And if the writer is concerned with "good writing" versus business writing, where then? So many factors involved that I venture to say no one can yet decipher where exactly writing precisely issues from, right, left or both sides of the brain...And music too, listening is different from writing it, do they both involve the same side of the brain, or is one more logical than the other? Certainly, writing music, learning to write it, involves a great deal of logical skill. When does it become somehow "musical"? When is a person simply writing music rather than transcribing notes?

Ah, so much about the brain I do not know, and so much there is still to be discovered. Even about schizophrenia...They are now studying glutamate as a neurotransmitter of interest. Now this is fascinating as glutamate, which has been implicated in ALS as well, is not as "safe" a molecule to "play around with" as dopamine. You can't simply raise and lower levels in the brain with impunity or with relatively harmless side effects like sedation or EPS. With glutamate, you can actually have ALS-like side effects! Or worse. I understand that if you add too much or block too much glutamate the effects could be fatal. So the tweaking must be of a different sort than simply pouring some in or blockading the source. So far, though, one very small study on one drug has shown positive results, though it was much too small to extrapolate any conclusions from except that more studies should be done.

As for ALS, well, lithium, which moderates glutamate, is now being used with Rilutek, the only approved drug for ALS and one that only modestly adds to life span (a few months at best). THe two drugs are only under investigation, and nothing has been proved about the combination, but so far results have seemed promising for the two-drug combo being better than Rilutek alone for increasing ALS survival. By how much, though, I do not know. What I would be hoping for is a matter of a year or more, not simply a few more months, which seems to me to be a piddling improvement, and not really worth all the investigation. But who am I to say? With Rilutek's 3 months and Lithium-with-Rilutek adding a few more months, maybe to someone with ALS that would seem worthwhile. Any additional time is better than no time, at the start at least. But if the additional time is only end time, time added to the suffering, then I am sure the drugs are the benefit they are advanced as being. We were told that Rilutek adds to the healthy months, but I wonder how the hell anyone knows...Still, if I had ALS, I sure as hell would not NOT take it!

That said, I will end here, having touched a great many bases, and covered none very completely. I still feel very unattached, very disconnectd and separate from...well, all of my friends, from Lynn, from Cy and everyone else. Certainly I feel detached from Joe, always have, despite my trying not to be, and all my talk to the contrary...I try so hard not to be disconnected, but fundamentally I am, as I say so often in this blog for whatever its worth. I can't think of anyone in the world I would need or miss that I could not replace easily, no, not even Lynnie at this point...I think...That's how empty I am, how little fellow feeling I have, how disconnected I feel. But enough. The last thing you need or want to hear from me is about this much-worried issue yet again...I apologize.

Brief update (Edited 3/25)

(Have tried to edit this many times but the paragraphs will not register...do not know why...Sorry. I did put them in but for some reason they are not "taking"!) I have been visiting Cy and watching out for him, though his family has also been around (they are gradually leaving this past week, and the last one, the eldest daughter, will be gone as of tomorrow, except for Leila and her partner, who will be in and out and about town for 2 more weeks). The younger daughter lives nearby and will be "on call," I imagine, doing her usual cooking on Cy's behalf at the very least. But how Cy will cope on his own is anyone's guess. He has seemed reluctant these past number of months, even to leave the house to do the shopping he was able to do...Now that he will be alone, how will he accomplish those things he must do? And will he ask for help if he cannot get them done? I can do what I can do, and certainly will do anything at all that I can...if he simply lets me know what he needs. It's tricky because Cy is so proud and so determined to be independent that I doubt I could simply say, Let me do such and such...But you never know. I have offered to do certain things for him and he has indeed taken me up on the offer before. Unfortunately, either the errand has proven fruitless, or it has required my driving after dark or too far for comfort, and so I have not successfully accomplished what he has wanted -- far too often for my comfort and his pleasure...Though naturally he would not say so. For me, it still has not sunk in that Lynn is dead. Partly because I still see Cy so regularly that it is hard to believe that Lynn is not in the next room, though Cy's grief is palpable enough. In any event, I do not feel anything...no grief, no loss, no nothing...Just numbness and emptiness, emptiness of feeling that is, not of missing a friend. I wish it weren't so, but that is how it is... As for Joe, he seems to have decided that it is fine with him -- the ungrateful a-hole -- that I cannot get there anymore. It's either I pay $50/week to get a ride there and back or I can't see him...and despite his having a huge trust fund, he has decided not to ask his mother, the trustee, to pay for the rides, though he knows I cannot afford it myself ( I already have enormous medical bills of my own). He would rather feud with his mother, after 50 years of putting up with her. He wants to have it out with her, in her 89th year, she suffering with breast cancer, he dying of ALS -- you'd think he'd want reconciliation and peace with her, but no, he wants WAR, he wants to upset her and cause her pain. He has actually said as much...I am so disappointed in him I cannot speak. He wants to be cruel to her, because as he says, it makes him feel stronger than she is for the first time in his life! But what a way to do so...And she is so bewildered, because she doesn't understand why he is behaving as he does, and he won't explain himself. No he is too passive to explain what he does or why he does it; he is just passively aggressive enough to play hostile games with her and be overtly cruel without explanation. Oh, cripes, I cannot explain it all, and I know a lot of it is his misunderstanding and lack of empathy due to Aspergers...He cannot get into her shoes and see where she is coming from, or try to undestand her point of view. He is still ONLY that 5 year old little boy he once was, with the big mother with the booming voice that used to scare him...and he cannot get past that, no matter how much I or anyone else tries to urge him to see that he is no longer a child. But that is the problem, he is not that child, and she is not that mother, not any longer. She knows this and has moved on. But he does not, and does not realize that people grow up and change and learn from life...Now, Betty, his mother, may not have learned much, having been an incompetent mother pretty much from start to finish, but she does love her son, and he cannot see that, will not even entertain the notion. Not that this maternal feeling does much to make her loveable. She is still the most inept and self-centered mother I have ever met. But she does do the things that a loving mother must do: come in from out of town when her child is in the ICU and stay all night and all day, as she did (much to Joe's dismay and consternation). Visit him in the chronic ward of the hospital, regularly, until he threw her out for reasons completely unknown to her...She does do what a mother should do, even if -- when she visits-- she behaves completely self-absorbedly and even somewhat "crack-brained," as if she is not all there (as I suspect she never has been). Anyhow, the upshot of this is that Joe can see only that she was an inadequate "abusive" mother, and he blames her for it, accuses her of doing everything to him on purpose, as if she could have chosen to be a better mother and did not do so deliberately...In response to this belief, he treats her coldly and accuses her regularly of abuse, which is the reason he wants to cut her off: she is abusive if she stares at him, if she touches his arm, if she leans over him, if she...anything at all, practically. Yet we -- Karen or I -- could do any of these things, and none of it would be called abusive. So it is not the objective act, but the person performing it that is "abusive." And why? Because he fundamentally can't stand her, and so hates any contact with her, casual or otherwise. That being the case, he is aching for a fight, and has decided that the trade-off, ---putting up with his mother, in exchange for being able to see me --is not worth it, and so has opted NOT to see his mother, or talk with her about getting me rides in, and hence NOT to see me either. That is his choice, and it is an actively passive one, if you can see what i mean. He thinks I will find the money somehow and thinks he can force me to pay for my own rides somehow, that I would never not keep coming. But I do not have the money, one, and I will NOT ask anyone in my family to pay any more than they already do for my assistance! It simply is not fair, and Joe truly does owe me after so many months of my shouldering the costs of visiting...Let him swinng in the wind, then, and see how long he wants to hold out. Karen can get there; she drives, and will do so, because she won't stay away, has no life otherwise. But I can stay away and keep very busy, having Cy and a thousand other things to do. I will miss seeing Joe tremendously, but if he thinks that I will pine away from losing my days with him, he is sorely miostaken, I will only have more time for my own things, and will get much more done than I have time for now. Maybe I will be able to start the next big sculpture project then, or finish making my bedroom into my studio, or both! ----------------- Later: I had a screaming fit with the visiting nurse and later, partly on paper and partly by phone with Dr O a day ago...They accused me of being "more paranoid than usual" and wanted me to take 2.5mg Zyprexa in addition to the 2.5mg I already take. They insisted it was in fact my regularl,y scheduled dose. But neither of them remembered that I agreed ONLY to take ONE 3.5mg dose all along, that the other 2.5mg was PRN, that the pharmacy insisted that both doses be written as regularly scheduled, because they couldn't hand out a Rx for PRN drugs...But in fact the second 2.5mg was PRN only...I was furious when they kept insisting that I'd been refusing the second 2.5mg, when I hadn't refused anything; it was NOT prescribed! It so enraged me that they would not listen or even try to remember what I know was the truth, because I know I'd never have agreed to take 5mg on a regular basis...knowing how it would make me gain weight even more than the damage done by 2.5 mg, which was quite enough thank you. So that caused one screaming fit and then a second one...and upset me for hours. Then, there is the infernal Eclipse I witnessed that has had no reasonable explanation given me by anyone yet...I do not know what or why I saw what I saw, I only know that it was apparently real and not even a dream that happened while I was awake ( a strange enough experience of its own, in its own right. After taking the last Ritalin and coffee, I found myself still so tired and sleepy tyhat I gave up on the ms and came to bed, where I find myself typing away, sleepy and double-visioned, but enjoying writing as usual. I wrote three poems in three days...I have been reluctant to put my poems on the interent, due to a number of website writing contests that forbid it if you want to enter. Whatever I wrote -- I am editing this three days later afterwards because the website went down before I could do so last time -- in the last paragraph, I have no idea what it meant! If you read it and scratched your heads, well, so did I... I think I had taken my Xyrem and continued to write, such that I was half in dreamland and still writing, and not making the slightest bit of sense, because I truly was half asleep. Forgive me. Half my journal entries end in such nonsense, I fear and the ones that don't suffer from terrible repetition as the Abilify gets me to write write write but with no memory or discriminationi to protect me from writing the same things over and over and over...

Afterwards...

Lynn died early Thursday morning, in her sleep, with her husband right by her side and all her family (except for the daughter who lives nearby) there in the house with her. This is what I wrote in my journal the next morning at 2:30am (Friday):

"Lynn died yesterday morning. Her son woke -- for reasons he still is not sure of -- and went to check on her and found her not breathing. He waited a while, since it could have been the apnea of Cheyne-Stokes breathing and not death. But a few minutes later she still had not taken a breath. She was still warm. He had woken at the moment life left her body, as they say sometimes a person will do when a loved one dies. Uncertainty or lack of absolute certainty that Lynn had died led him to wake Leila and her partner C , because C would know, having a medical background. C confirmed that Lynn was dead and so they woke Cy, who mercifully had slept through it, and everyone else and gave them the news...I can only imagine the sadness in that household, the tears, perhaps even the relief that it was over, that she was finally at peace...

Leila called me at 8:30am on her cell and as soon as I saw the number and heard her voice, I knew. "Oh, it happened, she ---" I didn't know what to say, feel or do. "Yes, honey, Lynn died," Leila said, "and we're all feeling just the way you do. Stunned, sad, we don't know what to do with ourselves...." We talked a while but I was largely numb and didn't even feel that sad. When we hung up I sat for a few minutes, until the reality of what had happened hit me. I called Lynnie. As soon as I heard the sound of her voice, I broke down and started sobbing. Luckily, she was still home and not with a patient, so she spent some time with me. Eventually, though, she did have to go to work and I knew it, so I hung up, feeling calmer anyway. Eventually I did call Dr O, but not because she had anything special to offer in this matter (in the end it took an email to get a hold of her, since her emergency number never did get to her). In any event, I didn't need a psychiatrist particularly. What I really needed, I thought, was to be with the L's. Fortunately, Leila called back twice, inviting me to come over, so after the visiting nurse came, very late for her at 10:30am, I drove over and stayed maybe 2 or 3 hours.

(I didn't go over there yesterday, Friday, because 1) I got up very late, around noon, and had too much to do, but mostly because 2) I wanted to leave the L's alone, not bother them, because 3) I have developed this strong feeling that Cy dislikes me intensely! There is nothing I can point to, nothing he has actually done or said that proves this or that would indicate negativity if I repeated it to others. I feel indeed that I have done or been so awful or so despicable that I deserve to be so hated! But what I have done, I do not know! I only know that I should stay away, not bother people there unless it is absolutely necessary...THe thing is, I cannot say it to them out loud, no. Because it would only bring denials, only force them to say, Oh no, we do not feel that way! Cy "loves you, cares about you, doesn't blah blah blah"...All of which I would not believe, whether it were true or false. And I do not believe they would tell me so, even if it were the truth, that I was correct about it all. So I cannot bring it up at all, and in that sense I cannot even rock the boat by not appearing tomorrow as I promised to...Oh, I'll play the game, yes, and even be sucked into it, but I'll be wary and I hope I'll have my wits enough about me to stay "an arm's length" away from Cy, at least far enough away not to disturb his equilibrium!)

Back to what I wrote in my journal early Friday morning: "About Cy, he seems stunned but resigned. It is good, I think, since death is inevitable, that Lynn died slowly. I know so. He had time to say good-bye, to come to grips with losing her and his own feelings of loss and abandonment. When he finally was able to admit, "I've lost her" as he did that last week, that was when she was freed to go...Or at least he came to that point in time such that when she did die, he was able to let her go with as much "ease" as was ever going to be possible. Not ease, no, but with acceptance and resignation that she was dying and that she had passed the point of no return.

I too, reached a final point just in time. That day she'd seemed awake, conscious if incoherent. Not clearly recognizing who people were but not clearly out of it either. In fact, I did think she knew I was there, when I spoke to her, when I was alone with her. That was when I managed to say, among other things, "Lynn, I want you to know I'm going to be all right. I will be okay, you don't need to worry about me. You really don't. I love you and I will miss you. I will never forget you. But I'm going to be okay. You...It's okay Lynn, good-bye." I thought she seemed distressed during the time "we" were talking; she seemed to want to say something, but would get out a word or two I couldn't quite understand, then fall into gibberish and trail off into slurry non-speech. I felt that she might want oxyugen, and it seemed that she said Yes, when the hospice nurse, a nun, asked her if she did. But I don't think they ever did put it on her.

Laurie-Ann, the hospice nurse, did tell me that Lynn was not in distress or discomfort, that she was simply in the process of dying and that this was what it looked like, that I shouldn't worry about her being in pain. It was true, she was not moaning or moving about as if in pain. In fact, she seemed less in pain now than she had for the last two years. She told everyone what to do if Lynn became "rattly" in her throat or very short of breath, but apparently that never happened. Everyone went to bed as usual, and she simply passed away when all were still asleep.

Now "mom" is dead (if you recall my essay for the word "mom" in my writing group, about Lynn). For years I've worried about this day, how it would happen, how I would feel or respond. I didn't think dying would take so long nor in the end that it woudl be, well, predicted almost to the hour. In fact, E, my visiting nurse, told me late that afternoon that once regular Cheyne-Stokes breathing sets in, the patient usually has only hours to live.

Cy is alive and sad but resigned. Better than I thought he would be after Lynn's death. Better I venture to say than he thought he would be after she died, though he would never admit that, feeling it might be a betrayal of her and his much avowed love for her. I think her lengthy illness -- here there is a break I will put elsewhere -- I think her lengthy illness gave him a chance to come to some sort of reconciliation with the idea of losing her, and some peace with the idea of being alone for the first time, probably, in his life (since he went from school to the war to Lynn's arms, if I have the chronolgy correct, or perhaps it was the war, school then Lynn... Yes, I think that is the order, though I do not know if more intervened).

As to the "lengthy illness" spoken of in the obituary...What illness did she die of? She did have emphysema, but I don't think she died of it. In the end, she wasn't even using oxygen to breath, wasn't wheezing or breathing hard or short of breath at all! I think she had breathing problems only when she was smoking! But the final 2 weeks, when she no longer remembered about smoking, her breathing was fine, and even when she was smoking, it wasn't all that terrrible. She used oxygen as an assist, but didn't absolutely need it the way some people do...Or maybe she did, I wasn't there often enough or long enough at a time to know. But she could go periods of time without it, so it wasn't essential for life at all times...

So she didn't die of emphysema. And she didn't die of pneumonia or temporal arteritis, two othe