October 29, 2007

Joe's amazing progress and the progress of his illness

In the Five weeks I was gone, Joe has made some amazing strides "back" from where he was, having just gotten out of the ICU. He is now using a portable ventilator, and is free to roam the unit, small as it is, in a power wheel chair, which he does almost daily. After we, or one of us, learns how to suction him, he will be able to leave the unit and go outside when the weather is good, maybe even leave hospital grounds, though we have no idea what the policy of the hospital is on that right now. At the moment, it's mostly a matter of who and how to learn suctioning, which is a matter of Joe and one of us taking an hour and a half 3-4 days a week for a tutorial. Given that it takes us 30 minutes just to drive to the hospital, and every one of us -- Gary, Karen and I -- are disabled in one fashion or another, this poses some real problems. We have already resigned ourselves to having THanksgiving in Joe's room or in the Day Room at a portable craft table we bring in, because there is no way any of us could learn suctioning before then. It is hard enough to clear out Joe's apartment by the middle of November, let alone get across town and halfway across another to learn suctioning...

Dr O and Lynnie and the visiting nurses don't even want me to learn it at all, fearing that the training and the responsibility will put too much pressure on me. They both understand something that is difficult to put into words, which is that this relationship, for all that I call myself Joe's "girlfriend", has always been very unequal. Joe fell for me twenty one years ago, and it was a matter of committed love at first sight. He has never wavered, not even when he "dated" Karen for about six months, more enamored of the idea of dating than liking Karen, whose favorite topics were and are movie stars and fashion...Joe could never figure out why either mattered in the world, and while he was polite, always came back to me, he said, because with me he could have a decent conversation! Plus, the only reason he "dated" Karen in the first place was because the abusive friend I'd had for the same twenty years had convinced me to dump Joe, stop "stringing him along, and free him to do so...This other so-called friend managed to use tactics such as this whenever threatened by my having any other friend. I relinquished so many new friends over the years, giving in to that friends bad mouthing them, or convinced that I was doing them more harm than good by the "honesty" of this abuser...

So, Joe dated Karen for a short time, but eventually dumped her, unceremoniously, when she became so flagrantly greedy and profligate that he actually blew his stack and got angry. When, later, she told me he'd yelled at her I could not believe my ears. Joe, angry? Impossible. I literally had never heard him so much as raise his voice with me. I had done so with him, yes, but he never responded to my anger with anger, only with calm reasonableness, and a willingness to try to figure out why I was so enraged. In 20 years, I had never but once made him mad, and then his response was simply to get up and leave the room. Even then, I am not sure he was really angry, so much as sick of my anger and perplexed as to how to get me to calm myself. He certainly never held it against me, and was always ready to see me again and start things anew.

But back to the unequalness of the relationship: I understood from the first time I met Joe in the hospital, that he was "in love with" me. It was kinda obvious...But I did not feel the same way towards him, not at all; in fact, given his lack of social graces (he had not yet learned how to have a conversation, nor even how to be socially appropriate in the usual adult ways; I was not perfect at it either, but was not the bumpkin he was...) I was totally turned off!

I tried to avoid him, but he followed me like a lovesick puppy dog everywhere, and since he lived in the same town, and within the same support community of the mentally ill, I kept meeting up with him no matter what I did. So we were friends, whether I liked it or him or not. He grew on me, but slowly, and I never felt the passionate love for him that he felt for me...I only love him now the way anyone loves a loyal and true friend; I may be his "girlfriend" because he asked me to be and I wanted to do something for him; but he is definitively NOT "my boyfriend" -- if you can understand the difference, and I never do put it that way.

It is not that there is someone standing in the wings, and in fact if there were, I would not have agreed to this arrangement. Of course not! But I do not expect anyone to come along at this point either. And so I can do this for Joe, and not worry, and not feel too horrible about it...Am I wrong, or two faced, or evil to NOT be in love with Joe, yet let him call me his girlfriend, without, at least mentally, feeling that he is my boyfriend? Is keeping that mental reservation wrong of me? In truth, I don't feel capable of falling in love, and I am really surprised that Joe has been (able to fall in love, even love at first sight!), given the paucity of emotion he has been able to feel in his life. I don't even know what he considers "love." But he has indeed treated me with "unconditional regard" so he acts like he loves me, and that is good enough for me...

As for the progression of his illness: he cannot push his body to an upright position, if he slips in bed and gets tilted to one side. He cannot raise his upper arms off the bed, though his forearms work enough to use the aphabet board, and his fingers can still type, though both tire easily. I don't think he can stand any longer, or if he can, it's a useless ability, since he has to use a wheelchair, though it may help him get into one for now. His tongue is completely immobile, but luckily he is allowed to spray his mouth with water which subsequently drips down his throat, because his swallowing muscles themselves still work fairly well, though he cannot have anything sweetened, lest he aspirate. This was a huge relief to him, as his mouth had completely dried out once he was on the respirator, and his saliva was thick and distasteful in his mouth. Without the ability to scrape it off his tongue, he was frequently uncomfortable to the max. It was a situation he has always found troublesome, and on Zyprexa, even before his illness, he was never without a cup of water in his hand. Now, he cannot do this frequently, but when the speech and swallowing therapist visit, they allow it with supervision.

Finally, I gave up on the Speech therapist ever getting Joe a speaking device, and wrote to Voice for Joanie, an organization in the state that lends out such devices to those who cannot afford or whose insurance will not pay for them. She said she will put a Palm Pilot type of device in the mail for me tomorrow, and it should arrive Friday or Saturday at the latest. I realize that Joe will be ambivalent about using such a machine: he is practically a luddite when it comes to technology: he knows it inside and out, theoretically, but is scared of it when it comes to actually using it! And he is so change-averse that he would rather be stuck with the alphabet board and nearly complete silence, than deal with the frustration of learning a new skill. But it may be too late for him to use the Palm. His fingers may not have the fine motor skill need to operate it. He was supposed to get one back in April, but they were upgrading the machines then and they weren't sent out until July...and he got pneumonia on the 4th...And so he never got one, and then it was too late...

Well, it is after 11pm and I have to take my first dose of Xyrem or else. One last thing: Xyrem, Dr O told me, has the additional benefits -- or Delta sleep, slow wave sleep, does -- or producing human growth hormone, and promoting the growth of lean muscle mass. This is very interesting to me, because for 7 years I have done almost literally nothing but sit in my recliner and read or write, except for a few trips outside a week to do necessary shopping, errands and appointments. I have taken NO formal exercise at all. Yet today I went for a walk with the reporter who wrote that lolng article on Lynnie and me some years back and climbed a steep hill, while talking the entire way, without the slightest hint of difficulty. And this while going at a good clip, my usual 3 miles per hour. So I'm wondering if indeed I have not lost the muscle mass I "ought" to have, all because of this drug. I actually dread taking it but if the above is true, well, perhaps I should be grateful.

Enough for now. Gotta stop and I ain't gonna even proofread this, so there!

Posted by pamwagg at 10:24 PM | Comments (1) | TrackBack

October 26, 2007

The Center Cannot Hold -- Reflections on a book

By Ellen Saks (Hyperion, 2007)

You know from the dust jacket, even before reading the book, that this memoir about living with schizophrenia tells a most unusual story. The blurbs suggest an exceedingly “happy ending,” littered as they are with phrases like “a beacon of hope” and “the most lucid and hopeful memoir [about schizophrenia] I have ever read.” But it is the briefest bio on the inside, telling us that author Elyn Saks is not only a full law professor and a professor of psychiatry but also an associate at the New Center for Psychoanalysis that begins to paint a fuller picture. Who is this Saks, what was her madness, and how the hell did she get to where she is now in spite of it? When you have schizophrenia, and sometimes even if you do not, you hunger to know more.

I was first alerted to the book’s publication by another website, which wanted me and my twin to review it as a joint endeavor, along the lines of how we did our book, DIVIDED MINDS. This assignment was derailed, alas, by my recent five-week hospitalization. Before Brock Hill interrupted my reading, Saks, a Vanderbilt grad, had left Oxford with an advanced degree, obtained despite a severe active psychosis and concomitant hospitalization. Back in the States, she entered and did exceedingly well at Yale Law School, meanwhile surviving a couple of brief but brutal hospitalizations at Yale’s psychiatric facilities. I was halfway through the book when my own Lyme-induced psychosis forced me to quit.

Now, home again, I finished the book: in California, after Yale, Saks meets with new successes – tenure at USC Law School, publishing several books, qualifying as a psychoanalyst, marriage to a man she loves. These are predictably intertwined with just as many psychotic episodes -- as well as two very serious physical illnesses -- that follow on the heels of every success, as she herself explicitly notes.

Saks claims that the difference between her and the rest of us, besides her stubbornness and the life “lottery” is not so very much. Skills and talents are distributed among the mentally ill as among the general population and it is only that “resources” aren’t (distributed so equally) that apparently keeps the majority of other mentally ill persons from achieving their true potential. To be sure, Saks had parental resources, and thus she had the benefits of psychoanalysis, which is unimaginable for most, who cannot afford even one analytical hour a week, let alone five. She asserts that this did make a difference, the relationship, those uninterrupted decades of non-stop “speaking her [psychotic] mind” to an attentive audience of one.

But was psychoanalysis really the key? What about the reams of research that always said the opposite – we are told Freud himself refused to treat psychotics -- and as a result deprived us of any insight-oriented psychotherapy? If we had individual therapy at all, we were kept at arm’s length with “supportive” measures or else short-term CBT. Not for schizophrenics the long, arduous process of analysis; most were not even capable of forming a true relationship, let alone a therapeutic one. Analysis in such cases would be pointless. That was always the theory, or at least the excuse. Nonetheless, I remember that I did have one, maybe two friends with schizophrenia who were in psychoanalysis, only intermittently on medication, and claimed that the intensive talk therapy alone would cure them. I lost touch with both of them as the years passed and we grew apart. The one I miss the most would be around 65 today. If she is still alive, I wonder how she is doing. It would be fascinating to know whether her prediction did in fact bear fruit. I’d love to know, and hope indeed that she thrives.

Saks, if she is the sole author of the book (she mentions someone’s significant help), is a competent writer; the book moves along well, without the jargon or legalese one might expect from a lawyer. My worst criticism is that it suffers from some repetitiousness, given the unending cycle of success followed by predictable decompensation that characterizes her life. I would not necessarily want to know less information – she chose her life episodes well, clearly had decent editorial assistance in this, as we did not (and did nowhere near as good a job). But I think she might have used indirection rather than dialogue at times. For instance, the dialogue rendition of “disorganized thoughts” soon wearied this reader with its repeated and somewhat “staged” rehearsal on the page. It did not often ring true and hence suffered from its frequent repetition. On the other hand, her oh-so-accurate depiction of MU-10 at Yale New Haven Hospital and the “liberal” use of restraints made me shudder, knowing exactly how she felt.

Saks claims – and ultimately, don’t we all, we authors of memoirs of madness? -- she wrote the book to give people hope. But she also wrote it to dispel the myth “that people with a significant thought disorder cannot live independently, cannot work at challenging jobs, cannot have true friendships, cannot be in meaningful sexually satisfying love relationships, cannot lead lives of intellectual, spiritual or emotional richness.” Yes, well, fine, I thought upon reading this. That is indeed what we aim for, ALL of us, and good for you that you apparently have it all. You must be the very picture of mental health. I mean, what’s a touch of “significant thought disorder” after all that? (I was, of course, showing myself to be a touch bitter, which is to say, jealous and mean-spirited, as the above shows...but, I mean, really!)

Then I did a Wait a minute, wait a minute! doubletake. What is wrong with this picture? Is this reality? Is this how things really are, that is to say, the usual when a person has schizophrenia? What about all the mothers or siblings or husbands of those with schizophrenia who clearly are not pressing forward with their lives, who are not getting good grades or writing award-winning papers, not earning a living, obtaining bonuses, marrying, or if married, continuing to enjoy mutually satisfying sex and love lives in spite of such a devastating illness? How do they reconcile Saks’ message of hope – for a kind of super success, even as psychosis continues unabated -- with the bleak reality of what they see? It’s not that I’m against hope, as everyone knows perfectly well. But let’s name the ogre first, and go from there. It does no one any good to pretend that you can simply ignore the illness by sheer strength of will (if only you have it), and go on as before...

There have been other schizophrenic high achievers: to name just one, Carole North wrote “Welcome, Silence” several years ago, a memoir of her travels in schizophrenia-land during medical school. She was cured by dialysis – one in a million, she says now -- and became a psychiatrist who nonetheless does not recommend dialysis for anyone else. Cases like Saks and North are too much the exceptions to what is depressingly often the rule: a teenage boy or slightly older young woman gradually deteriorating before the puzzled eyes of family and friends, losing interest in school or work or even in socializing, perhaps becoming interested in new and bizarre subjects no one else can follow, becoming delusional or hallucinatory, and so on, or the sudden psychotic break that cannot be ignored, followed by hospitalization. Sure, there is always the 25-30% who fully recover and never have another episode. Though I am sorry they went through the pain of psychosis at all, I can’t concern myself with them. In some real sense, they do not have the kind of schizophrenia that I’m talking about.

It’s the other 70-75% I speak of, those who are either intermittently or chronically ill. Typically, many and I venture to say the majority of people with chronic/intermittent schizophrenia, do not work, or do so at a level not commensurate with their education or their potential. Many do not live independently, and those who do often have some formal “help” or structure in their day, whether through a partial hospital program or protected work setting, or a visiting nurse or social worker/case manager who comes to see them regularly. Few marry, and those who do, in my experience have trouble with sexuality, with functioning sexually as well, usually due to medication. As for rich emotional, intellectual and spiritual lives, I’d have to say that all are compromised when person is hampered by psychosis and/or chronic schizophrenia; even the obsessive spirituality that affects some psychotic individuals has a certain uncreative rigidity about it that is not truly free, nor as emotionally or spiritually rich as that which is less coerced. Playing tennis with Bible verses, which is the usual form it takes, does not prove a spiritual wealth, not by my lights.

However, if a schizophrenic person is lucky, as I am, as John Nash is, as are several others who have made movies or written recently released memoirs, around age fifty the illness begins to attenuate. Or else the medicines get better, or a little bit of both. Whatever the case, recovery begins to be possible and we start to blossom. No one can predict whether this will happen or not. Some illnesses merely “burn out,” leaving a shell of a person, neither ill, nor truly well, a double tragedy. Some have developed severe tardive dyskinesia from years on the older drugs and this already characterizes and disables their older years, despite improving mental health. No one knows what will happen as they pass into their fifties and sixties. I imagine some people simply stay sick all their lives but I would hope many more do not, or not to the same degree.

In the end, books like Saks’ make me feel bad about what I was never able to accomplish. And I worry that they suggest to the wider world – as does a recent review in the Hartford Courant -- that it should expect equal from the rest of us, from me. But don’t you see, I want to cry out, I’ve already done the very best I could! And I really believe that that is true of most people, especially those with schizophrenia. We are not lazy, we are not stupid or dull or willful, we fight to get through each and every day, no matter how hard that is. Saks’ “proof,” her massive achievements to the contrary, we have an illness that makes it devastatingly difficult for us to access, much less live up to, the potential we know, and yes, we know, is there inside us. We achieve by simply getting up each day and facing our many demons and pressing on. Do not count our achievements – however humble by comparison -- as nothing, just because they are not Saks’ or North’s.


PS I probably will cut this down by 3/4 if I actually submit it somewhere, as it is MUCH much too long and long-winded. But I indulge myself here and allow myself the bull-headed luxury of giving you everything, every stupid little thing I think and thought about this book. Relevant and important, or not! Feel free to discard or discount everything that you think unworthy of me or just plain disagreeable. I felt downright disagreeable at times! In point of fact, the book really irked me in places, I think because it just plain made me jealous...How come I couldn't do all that myself??? I berated myself. A useless preoccupation, singularly! I couldn't and I didn't, and that's just how it is.

So take it all with a grain of celery salt or sel de mer, and if I seem sour, take it with a spoonful of sugar. I will be sweeter tomorrow. Anyone else read this book yet? If you feel like sending me your own reviews or opinions, I will put them up on my next blog page if you give me permission. Or you can post them yourselves in the comments page if you prefer. (If you want them put up on the blog, publicly, send them to me at my gmail address above).



Posted by pamwagg at 08:25 PM | Comments (9) | TrackBack

October 25, 2007

Where I am today...

I'm tired, mostly due to two nights fighting sleep, working against the Xyrem and as a result getting under 6 hours bad sleep. Woke with a ferocious migraine, took a 50mg tablet of Imitrex, for lack of two or the 100mg one I usually take, then decided, fork it, I really need one of my precious injections. Luckily, the injector mechanism worked -- sometimes they do not and if I can't find one that does, I am out of luck -- and I lay down for a half hour to 45 minutes, hoping to get up migraine-free.

No such luck. It was clear that lying down made the headache worse in any event, so after several minutes, I got up and immediately noticed a difference: the pain subsided almost completely when I stood. Gingerly I tried sitting upright. If I didn't tilt my head forward, that too was painfree. Aaahh, a solution! At least until the headache relented and released its piercing grip on my left temple.

This afternoon, I drove across W---field to see Cy and Lynn, her sister Leila and, I hoped, Lynn's son Danny, who is in from Texas for a week. Danny was nowhere to be found, but I made a "date" to visit with him and Sherri, his wife, on Sunday. They are two delightful people I adore and wish I could see more often than twice a year.

But I wanted to update you on "Mom." It is hard for me to know what Lynn is like when I am not around. I hear tell that others find her sometimes difficult, with personality quirks she never had before and far less patience or tolerance for frustration. Everyone understands that this is not voluntary and that Lynn is not "herself." For one thing, she is torn this way and that by a dozen different medications she cannot NOT take, and lord knows what effect each one has on her mentally, let alone in combination. Oxycontin alone must do a number on her, and she is certainly dependent on that (and so what? She's at the end of her life, and if she is addicted to a prescribed narcotic, who is going to blame her? And why deprive her of it just to avoid addiction? The very thought is foolishness!).

It seems to me that she is newly jealous if I pay too much attention to others i.e. Leila and Danny, when I go over there, and do not attend sufficiently to her. I can see it in her eyes and even in her posture, and intuit it in her behavior, the way she sometimes says she is going to take a nap (but never quite gets there) when I have spent too much time on the computer with her sister. But that's okay, I realize that I have to make sure that when I visit, Lynn is the reason I go, and the focus of my visit, no matter who else is also there at the time. After all, Leila and Danny are sometime presences in my life (much as I love them), whereas Lynn has been there (here!) for me for more than 2o years. If nothing else, I owe her the loyalty of my attentiveness, especially now, when she has so few things to enjoy or look forward to. THe least she deserves is for her "third daughter" to pay attention to her!

Lynn's memory is awful these days. She tries to hide it behind rather skillful confabulations, so that when I refer to something she clearly doesn't remember, or perhaps could not possibly know, but doesn't know the difference, she responds so socially appropriately that it it's hard to fault her. Someone casually speaking with her might not realize that she has no idea what she or they are talking about. Sometimes she will say words to this effect, like, "My mind is so ---" well, I can't think of what she does say, but I've gotten the impression that she is well aware of her lack of understanding, and that it pains her. She seems so lost...I try to talk about things she can remember, and give her prompts so at least she can find something to say if I ask her a question. But it is scary how often she will ask me something twenty minutes after she has asked me the very same thing, or repeat telling me something she just told me an hour ago. This doesn't bother me per se, in that I simply listen and respond as if I have not heard it before. But it saddens me terribly. It seems like such a short time ago that Lynn was driving me to my doctor's appointments a hour away, and now to be reduced to this? But reduced to what? She has dignity. She has respect (from me at least). She is loved and taken care of. Is that something so awful about old age that we are to be taken care of again? Maybe that's what it is all about, the full circle, and maybe that is good. I don't know that Lynn is reduced or diminished by her physical and mental "decline" so to speak. Perhaps we need to see it merely as the way we....Oh dear, I cannot go on. I'm crying, because, well -- you know why. It's that same old same old. She wants to die, but...


We all -- I don't actually know who "we" are, so I will speak only for myself, though I believe that Leila has said as much to me and Lynn is surely much closer to her than she could ever be to me -- I know that Lynn is on her way out, and that that is probably true for Cy, as well. Which one will go first is really moot, because it seems clear that neither will live without the other for long. It has been, what, 60 years of true love, and one of the happiest marriages I've ever seen. Right up through this year, Cy has always spoken of Lynn as the "love of his life." And will no doubt do so till the end. If there were hard times, and naturally there had to be, no marriage is without them, the bond survived, perhaps even strengthened. I have never heard either say a nasty thing about the other, truly! Not the way my parents might, openly, to anyone who will listen. (Cy and Lynn also would not verbally put down their children, certainly not in public, much less make a habit and a virtue out of it).

But returning to Lynn, it is clear that she is not thriving, that she is unwell. She claimed to me that she weighs 100lbs, but that is impossible. Her legs are as thin as baseball bats (perhaps thinner, I don't even know if that is a good analogy) and just last week she fell getting up from her chair and broke her arm (no one knew it for 2 days, because the first x-ray wasn't good). Her arms themselves are like railings, and it feels like she has lost inches in every direction just in the five weeks I've been away. Leila said she weighs between 88 and 90 lbs when I last spoke with her about it, 2 weeks ago. But I can't believe she weighs even that much now, though they tell me she does consent to eat a little. I'd be SO happy to know she weighed even 95lbs, let alone 100, but I don't believe there's a chance, and even if there were, it wouldn't change things: she is on oxygen and still smoking and the projected trajectory, unless things change radically, is downward...

I don't want to finish this entry right now, because I am only giving facts, and that's not really the point of this blog. I cannot look her death in the face right now, and see no point in dealing with it before it happens, even if that would prepare me and reduce the potential shock to my system. I will not do so, I will not. It's one day at a time for me, I have to do it in terms of the environment, and all the other impending disasters, so I'm entitled to live in the moment in this matter too. Lynn is still alive and kicking, if weakly, and so I will be there to kick with her as long as she wants me to. Fork death. It comes for all of us, but why anticipate it when it comes eventually whether we look for it or not.

Tomorrow I see Joe for the second time since Brock Hill, and I will update you all about him then.

Posted by pamwagg at 08:44 PM | Comments (0) | TrackBack

October 24, 2007

New Poem on Paranoia

I believe this is pretty self explanatory, especially given the epigraphs that precede the poem. I wrote it for my Writer's Group, for which the prompt was, "Now or never..." But it derived directly from my hospital stay, as you will see. Not much more to tell you about it except that the one thing I hope you get from it is an appreciation for my experience of paranoia, which is not everyone's by any means. Mine is a personal, meaning a person to person paranoia, individuals near me are undermining me or planning or plotting against me...Yes, in the past it was the CIA and so forth, but these days it could be anybody and is as likely to be the guy sitting next to me on the bus, or Karen, as it might be the NSA or FBI. MORE likely now, in fact. In that sense, the confabulations of my brain, trying to make sense of the "I am afraid" message sent by the amygdala without stimulus, seem "saner" because they are less outlandish in their scope. They concern real people and regular situations, for the most part, though usually ones that are unlikely to occur and unthinkable to the one accused! What it looks like to outsiders who don't understand what is going on is too often that I get upset, furious even, by some little thing that displeases me and -- wildly misinterpreting what is going on -- I blow the whole thing out of proportion and cause a "scene" or have to walk away from causing one.

However, that deserves a whole 'nother discussion, and I have here a poem to show you that has nothing to do with that!



For Isabel Gill

The mechanism of paranoia is an electrical impulse, a feeling generated in the amygdala -- of fear, of certainty, which the brain instantaneously translates into a “story” that makes sense of it, the paranoid delusion.

The hippocampus, shaped something like the horseshoe for which it is named, is the brain center critical to memory.

Whenever you are sure a communication has a secret message or there is a secret plan or pattern to be figured out,
think: Paranoia.
Carolyn S Spiro MD, my twin, a psychiatrist

Three weeks into the five you’ll spend
at the best psychiatric hospital
in the state and your treatment team,
that competent octet behind the scenes in charge
of your handling and care, still concludes
your paranoia remains “incompletely resolved,”
even as those who talk behind your back talk
behind your back behind your back
scheming familiar conspiracies, which, the team notes,
you note copiously in a nearly filled journal,
all the entries recording your amygdala’s aberrant sparks
and an instant confabulation of “reasonable” fears.
Writing, you’re told, is an excellent coping skill
and, if practice for your poetry, better than acting out,
on impulse, or screaming. Fourth of the five weeks, it’s hard
up against the wall; you learn and forget, learn and forget:
Minds heal. Learning changes neurons. Doubt
everything you think is both “secret” and “certain”.
Fifth week, another amygdalar flare, the gauntlet thrown,
red cape and quickfire, and this time you just know
you know. Now or never! Seize the moment and---
A light blinks on in the horseshoe of memory:
you have been here before.
You breathe through the reflex, resist
the urge to plumb the abyss,
question perception, question feeling, question certainty.
You do not look around you.
There are no clues. You remember
all is in fact not as it seems.

Posted by pamwagg at 12:29 PM | Comments (0) | TrackBack

October 22, 2007

First Update and An interesting Website

I want to pass on a link to the Rolex Laureate website that I found while researching the two-pot method of cooling and preserving food (I confess to indulging a moment's panic surrounding how to survive a global Great Depression and the resulting social collapse, but I won't say any more on that).

Mohammed Bah Abba's work in Nigeria, spawning similar efforts in poor communities in other Third World countries, seemed to me truly useful and inspiring, an example of how one individual can have an effect on an entire large group. It's not that the idea has not been known or used before. Porous material and evaporative cooling has been understood or at least utilized for centuries, even millennia. But it was Abba who turned a desultorily applied concept into mass production, and mass distributed the inexpensive pots free of charge (also employing local pot-makers in the process).I should add that this had far reaching ramifications, such as permitting unmarried Nigerian girls the time free from vegetable selling to go to school.

I realize this project may be of little interest to many of my readers, but it deeply moved me. Since the article provides Mr Abba's address, I decided to pass it on.


I spent about 5 weeks at a psychiatric hospital I shall call, for lack of a better name, Brock Hill, a private, but now like most of those once posh institutions, open to patients with Medicare and Medicaid. (Title 19) as well. Appearances not withstanding, and the acreage was certainly "country club" though most of it inaccessible to patients and hence useless and unused, it was mostly a psychiatric unit like any other. The nursing shortage was as evident there as elsewhere, though they had plenty of mental health workers (MHWs) to call upon. Travel nurses made up a large part of the staff, RNs living in another state who signed on for approximately 12 weeks as a way to work and travel the country. My favorite nurse was a travel RN in her 7th week at Brock Hill. She will not be there if I ever have to return.

The nurses and MHWs were a mixed bag, some I liked, most I liked, but a certain few I detested, and the last weekend I was there I had a run-in with two that was truly awful. But that I will deal with another time. For now, just an overview.

As I was, as usual mute for the first few days, I was given a single room, which I kept for the duration of my stay, much to my relief as I spent almost all of the time on CO and in my room, except for the very last week (I was still on constant observation up till the very moment of discharge, but that final week I was encouraged to do some "power walking" down the corridor with COs who were athletically inclined). I ought to have attended groups, but alas, boycotted most of them, laboring under the flase belief that they were similar to those in city hospitals: designed to babysit only, not meant to encourage any therapeutic work lest wounds be opened that could not heal in the average 3-5 day stay permitted. My social worker, who saw me every day, seemed only to agree with this assessment, and failed to disabuse me of the notion, even though the average stay at Brock Hill was 2-4 weeks and the groups, as it turned out, were greatly appreciated, and productive.

I can only say that because I finally attended a music therapy group on my final day there...and actually dared to pound out my anger (then) on a drum in front of everyone, and drum unself-consciously, if softly, to an emotional song, making up my own rhythm as I went. The very fact that I trusted the leader of the group enough to do all this moved me, and amazed me, as I trust very few people, and then only after knowing them a long time. I understood then how powerful music therapy could be, how important it could have been to me, had I been going reguarly, rather than just that once. Extrapolating from that, I realized that most likely the other groups too would have been helpful, and not useless or babysitting at all. I should have been encouraged to try them. I felt cheated, and misled, and on my last day there, both angry and sad.

It's a long story why I was angry, but it was for another reason, having to do with my taking 20mg Zyprexa, then suddenly deciding to stop taking it the weekend before my scheduled discharge...Not a very enlightened thing to do, but I was desperate, certain that I was gaining weight, but even more certain that my food-obsessive thoughts in-hospital, controlled there by the unavilability of food, would translate to massive weight gain once left to my own devices outside. Everyone was POd at me, and unwilling to change the prescribed drug regimen at that point, leaving it all up to Dr O when I got home. But I felt left in the lurch, unwilling to take the Zyprexa but left with only PRN Haldol I wasn't sure I wanted either!

In the end, I took Haldol for a few days, PRN or no; my visitng nurse insisted on it. Then, a large bit of good news changed everything: it turns out that Femto Press is going to publish my manuscript of schizophrenia poems, with intro and commentary by Dr O, in their Kalmia Book illness and recovery series! I was so thrilled when I got the unoffical news, I started crying...and called everyone I could think of. But then the indecision set in. What would they want of me to get the ms ready for publication? Would they want rewrites? would I be ABLE to rewrite or add poems, subtract ones I no longer liked? How much could I change or edit? All questions that required a clear and active mind, which Haldol did not reguarly provide me, but which Zyprexa did...Would I take Zyprexa for the sake of the book?

I called Dr O, since she was a part-author...She asked me the same question, wanting the answer to be yes. Okay, I said, I'll try it, but only at a low dose, the lowest possible, and only with the Zantac that Dr G at Brock Hill said had been shown to prevent weight gain in certain susceptible individuals. Good for you! she responded. But let's talk about it again when I see you this Tuesday.

So that's where we've left it. We talk some more tomorrow. So far, I have taken 2.5mg of the drug three days in a row. My appetite is definitely greater than it was without the Zyprexa, but it is hard to know if this is due solely to the drug or partly to having been conditioned by hospital-scheduled meals to eat three times a day. I do know that I feel hunger pangs more, and cannot ignore them, or do not want to...And I think more about food, though I try to ward off the need to eat till meal times by drinking Fresca and Crystal Lite. (I should stick with only Brita-filtered water, that would be better for me, I know!)

But I understand that many people who fight weight problems deal with this successfully, and maybe, even if drug-induced, I can too. It's just hard knowing that it is artificial, and that all I'd have to do is NOT take the drug and I'd not need or want to eat so much. But I'd also not feel very good, or be as creative and productive or be able to read. What sort of a choice is that? That's the choice I'm forced to make. I realize it doesn't sound momentous now, when I've only gained from 92 to 97 pounds (involuntarily, mind you) but that's five pounds in three weeks I did not TRY to put on. If I continue gaining at that rate, I could be 112 by the end of the year and 132lbs by March and 152lbs by June...20lbs every three months and you see what I mean? My father says it's worth it; how many of you would agree (and would do it yourselves? -- I know one of you has, but I'd love to hear from the rest.)


Posted by pamwagg at 09:33 PM | Comments (4) | TrackBack

October 19, 2007

Home Again

Back, shaky, and exhausted. It will take some time before I get a longer entry started, but I wanted to explain that I was in a psychiatric hospital this time, not a unit of a general hospital...Left unwell, alas, but am doing okay nonetheless.

Thanks so much for all your comments on my last entry of September. I was hoping my sister would get a message of explanation to Brian for posting here, but it looks like that was not possible. Is anyone still out there?

Anyhow, I will be back in a while -- dunno how long exactly -- to retake up my postings. I hope to regain some readership eventually. Thanks again, everyone.


Posted by pamwagg at 06:18 PM | Comments (12) | TrackBack