Papier mache goose is painted with acrylics both metallic and non-metallic and it stands (yes!) on a “bed of pebbles and dirt”.
Papier mache goose is painted with acrylics both metallic and non-metallic and it stands (yes!) on a “bed of pebbles and dirt”.
I don’t know what happened, but I don’t believe I am seeing depth any more, or very rarely. I discovered this when I looked at some shelves, and again experienced the sensation of the incredible beauty of space, which told me that I was not in fact used to seeing it. If I were, I would not marvel so.
I immediately started the vision therapy exercises again, in part to test myself, hoping to reassure myself that I could still do them easily. In fact I cannot keep both my eyes “turned on”, even doing so-called pencil push-ups. During these, you wear red-green glasses and look at a white pencil held at eye level and about 12 inches away. The idea is to slowly bring the upright pencil to your nose, all the while keeping it “one pencil” i.e. not doubled, and the white color as red and green (due to the bi-colored glasses). When I do manage to keep both eyes on looking at the the pencil, the pencil itself goes double and blurry. Also, another exercise, when I manage to get both eyes on by holding a finger up and focusing on another object held behind it (the finger should double), then I notice that the background is crystal clear with jumbled intersections near borders, even though I know from experience that they ought to blur if I am seeing 3-D.
Then there is the Brock String, consisting of three balls on kite string tied to a door knob and extended out maybe ten feet. The red ball is 6 inches from the door, the green midway from it, and the yellow ball six inches from your fingers holding the other end at your nose. The idea is to focus on each ball, and see an X form in the string in front of a single ball, then switch seamlessly to another ball, over and over. Well, I do the green and red without too much trouble but forget the yellow ball (the near one). I cannot do that one at all, or at least very rarely. I see two balls and cannot bring them together; the X simply crosses and keeps on going until the balls appear at each end of the X rather than in the middle. It is only when by chance that I start out seeing one ball that I might be able to keep it that way, but then I discover that it is because I only have one eye “on” after all…or that one eye is dominating the other.
I never did get new glasses, the one Dr D prescribed at the end of my Vision Therapy when my eyes had so improved. I imagine there is no point in getting them now, since they were for better vision, right? But is there anything more I should be doing, except restarting the exercises? I wonder…I wrote to her by email, but received a weird “Auto reply” that said only that she would not respond at this time…Did not imply that she ever would…So now I am essentially on my own and I only remember those two exercises. If there are others, I don’t do them. But I do turn my eyes on by looking at my fingers, one in front of the other, several times a day, which is, I think, helpful in its own right, even if the effect never lasts and the desired doubling is small.
I guess it took several months the first time I did this, so I can’t expect miracles this second time, even though I do anticipate that it will take a somewhat shorter amount of time and less effort to get “space” back. After all, my eyes and my brain already know what they are looking for. But it doesn’t bode well for the 3-D phenomenon staying or sticking permanently without continued practice, or at least without continued vigilance…I would hate again to fall into the “not knowing I don’t see it again” non-awareness trap. I did subconsciously understand as I painted the goose that something was wrong, but I somehow refused the knowledge I ought to have looked square in the face. I guess I did not at that time want to know that I wasn’t “getting” the full pleasure from the experience that I ought to have. It might have spoiled it for me, maybe.
Now that I am free, however, I can concentrate on my exercises, and make jewelry, which uses these skills. And see how long regaining them will take. I hope not long. But I must be patient and let it happen as it happens.
On Thursday I will see what I hope will be my last shrink and then I will choose from amongst the three that I have interviewed, though I doubt highly that #1 will be among the real choices. I will certainly count #2 and hope that #3 also provides some real choice. The first is female the second is male, so there are some real differences between them, the female also being an APRN and the male an MD, which is not necessarily a plus. However, we will wait and see, until after I have met Dt Whats his name and have some idea what he is like. Wish me luck. I have my last in-person session with Dr O on Wednesday so I’d better make up my mind soon.
Before I start, I want to tell you about a wonderful site on the web, and recommend a visit there: Check out http://www.compassionatecooks.com for info on a plant-based diet and man’s cruelty to animals. Also, wonderful nutrition info you simply cannot find in one place anywhere else is here, easily accessible especially if you go to the podcast and begin with #1.
President Obama has said that in his search for a Supreme Court nominee, he is going to be looking for something with empathy. I am going to give him the benefit of the doubt of assuming the shorthand to mean that he wants the nominee to have the capacity for empathy. But what did he mean, or by extension what do we ourselves understand by this word “empathy”? The German term, coined by the German philosopher Rudolf Lotze, or Theodore Lipps (sources conflict) in the mid-nineteenth century (einfühlung) or the literal English translation, “in-feeling” was originally a term of art appreciation. “Empathize” was coined in 1924 came closer to the meaning it has today.
In explaining his vote against Chief Justice John Roberts, Obama wrote:”[w]hat matters on the Supreme Court is those 5 percent of cases that are truly difficult…In those 5 percent of hard cases, the constitutional text will not be directly on point. The language of the statute will not be perfectly clear. Legal process alone will not lead you to a rule of decision…. in those difficult cases, the critical ingredient is supplied by what is in the judge’s heart.”
Definitions of Empathy abound and here are just a few. Wickipedia: “Empathy is the capability to share your feelings and understand another’s emotion and feelings. It is often characterized as the ability to “put oneself into another’s shoes,” or in some way experience what the other person is feeling. Empathy does not necessarily imply compassion, sympathy, or empathic concern because this capacity can be present in context of compassionate or cruel behavior.” (Italics mine)
Hannibal Lector in the Silence of the Lambs had empathy, a terribe empathy, and he used it to horrific advantage as he was able to intuit volumes about a victim, having gotten, as we say, into the person’s head. He also had no comscience, since he seems to have had no regrets, he perhaps even enjoyed having inflicted pain and horror upon the persons he murdered in such grotesque fashion. But he did so because he understood just how much pain he would be causing them…Note, later I thought about this and wondered if it is true that he actually could experience the semi-vicariousness of empathy and still be so willing to inflict torment on others. It seems to me that if he truly understood — in the sense of feeling for and with the person — how he or she suffered, he could not possibly cause such pain. Also, is not implicit in the notion of empathy some indication of compassion? Well, you see how difficult the subject turns out to be!
To continue with others’ definitions: Carl Rogers wrote: “To perceive the internal frame of reference of another with accuracy and with the emotional components and meanings which pertain thereto as if one were the person, but without ever losing the “as if” condition. Thus, it means to sense the hurt or the pleasure of another as he senses it and to perceive the causes thereof as he perceives them, but without ever losing the recognition that it is as if I were hurt or pleased and so forth.”
Khen Lampert (2005): “[Empathy] is what happens to us when we leave our own bodies…and find ourselves either momentarily or for a longer period of time in the mind of the other. We observe reality through her eyes, feel her emotions, share in her pain..”
There is something else that precedes empathy, which seems to be innate to the human species. Emotional contagion according to Wickipedia is “the tendency to catch and feel emotions that are similar to and influenced by those of others. One view developed by John Cacioppo of the underlying mechanism is that it represents a tendency to automatically mimic and synchronize facial expressions, vocalizations, postures, and movements with those of another person and, consequently, to converge emotionally.”
Sympathy or “feeling with” on the other hand, used to mean what empathy has now come to mean. “In Eng., almost a magical notion applied to it at first; e.g. in ref. to medicines that heal wounds when applied to a cloth stained with blood from the wound. Meaning “conformity of feelings” is from 1596; sense of “fellow feeling” is first attested 1662. Sympathize “to have fellow-feeling” is recorded from 1605. Sympathetic “sharing the feelings of another” is from 1718.”
Now, my concern is not actually Obama’s use of the word, though I frankly believe he simply meant “humanity, or humane spirit or humanism” or something like that. It is rather with my own ability to feel empathy that I am concerned. I know that many people get anxious when I tell them I fear I cannot feel empathy, because to them it marks me, or might if true, as somehow less than the warm, caring and compassionate human being they take me for. Now, how I feel being whatever it is, I firmly believe that what I wrote back in 1984 remains as true today as it ever was then, that love, and forgiveness and compassion are decisions of the will and acts that flow from them, rather than pure feeling-states. In fact, I venture to say that the feeling itself is less important, if important at all, than the act.
Take Mother Theresa for example. After early spiritual experiences, she apparently led a life almost entirely bereft of the feeling of God’s presence in her life, a state of bleak lack of further spiritual connection. She was close to despair more than once. Yet she came to be regarded as a saint for her acts of humble compassion and altruism and few ever knew how desperate she sometimes felt. So good was she seen to be, such an example of true Christian values, that she may soon be declared an official Saint of the Roman Catholic Church
There is absolutely no implied analogy here, nor any claim that my acts resemble those of Mother Theresa in any imaginable way. I mention her only as an extreme example of someone who was clearly an exemplar of compassionate goodness, but who nonetheless felt different on the inside from what people always assumed. This does not, and should not, detract from the value of her acts, nor their purity as acts of love and kindness and selflessness. No, in my book they only point them up the more, for being driven only by her will and her conscious decision to act on what she knew she had to do, rather than on the easy impetuosity of emotion. The decision she made to give her life to the poor and sick of Calcutta must have been hard; it is always easier to act when emotions run high. But that only makes the fact that she did, and continued to make that self-sacrificing act her life for decades afterwards, all the more breathtaking.
Now where was I? Mother Theresa seems to have felt empathy, though of course we cannot know this. All we know is that she acted compassionately and humbly and with extreme kindness always. We want to think she felt empathic, but have little evidence to prove it (or disprove it) in the end. I think this is why I brought her up. There is no comparison between us, of course, my problem being the evil I cause rather than the good she spread. However, I rely on a display of compassion to others, which is deceptive, as I am ashamed of my evil essence, do not in fact wish to pollute and contaminate as I do. I do not lie and tell people I am harmless, but I try to act like a good person, to be seen as empathic and sympathetic, always ready with an open ear and a willingness to listen at all hours of the day or night. I do good things, go out of my way for people, believe that it is the acts of love, of compassion that is important, because I must: I cannot feel either!
I do not know why this matters so much to me, but I believe it has a great deal less to do with empathy than with something far more selfish: I treat people as I know I want them to treat ME. I want to be listened to, I want to be assisted when I need help and so forth. So I do it for them, hoping someone else might also do so for me. Not in return, mind you. No, I know the world does not work that way. But perhaps, in some fashion, I might “earn it”? And if not, well, I did not deserve benign treatment anyway, being evil and malignant from the start…In short, I practice the golden rule, perhaps, but a very self-serving kind of one.
But the difference between this and empathy is huge. I ask a fundamental question that is in fact the reverse of the essential one asked in empathy: Not how would I feel if I were that person, if I were that person with such and such happening to me. But how would that person feel if she were I? It is a subtle point, a subtle distinction, but a crucial one. On the one hand a person shows a capacity for true empathy — how does that other person feel? — and on the other merely demonstrating that he can recognize a feeling state in another person because he has felt something similar in himself and he can imagine himself feeling that way again.
Many years ago, my father put together a book on the subject of empathy in which he, revealingly, made precisely this semantic error, defining empathy as “how would that person feel if he were I?” I tell you this only because I believe that my own lack of empathy stems from his, from his inability to teach me to feel what he himself cannot feel or understand. My mother was not particularly close to me growing up, because she felt that I somehow felt superior to her, which was far from the truth. Nevertheless she took into her head that notion and could not get it out (her worst accusation to me, when angry, was “You are just like your father..!”) with the result that I felt shut out a lot, forced not to feel or reveal any stray feelings that might still arise (Note: the bulk of my emotions had long since been squelched or shut off in my extreme effort not to be hurt or let anyone ever know they’d hurt me, or know anything else I felt, for that matter…) ** She did feel compassion and empathy, but nonetheless her effect on me in this respect was minimal, her effect on me was hurtful. (Not in every way, mind you. She was a good mother in general, though she failed me in some crucial aspects.)
** Note that relations with both parents are vastly improved at present, that I love both deeply. I write of the past truthfully, but without rancor or even regret.
In any event, the result was that I had neither mother nor father to teach me either in words or by example or in action what empathy was, and it was my misfortune to be too shy and perhaps too ill already to meet or interact closely with any other adult who could substitute for them. The result of that, I fear, is that I cannot actually feel empathy, and without empathy I cannot feel real love. But hell, I don’t even feel affection, not really. I never ever feel like reaching out and putting a hand on anyone, or hugging them spontaneously…If I have ever done it, it has been stiffly and without feelings of desiring to or without “getting any good feelings,” only feeling reluctant and even repelled.
Did I say I could not feel affection. I must correct myself: I feel deeply affectionate for my cat Eemie, and this despite all my earlier avowals that I wanted to get rid of her for fear that I might kill her…I dunno why I said that. I think, no, I know it was because she was not sleeping alongside me anymore and was, for some odd reason, ignoring me, just sleeping in her spot behind the bookcase and eating secretly and sleeping at night by herself, so that I felt abandoned, and all she ever did to announce her presence was to knock things off the table when I was asleep, and break them!
But since I got out of the hospital in February, things have changed. Eemie is back to sleeping next to me, on top of me, or in between my feet. She crawls onto my lap when I am typing or reading and tries to get me to stop everything and pet her. And she ankle-dances around me all the time, as if she cannot bear not to be near me. In short, I no longer feel abandoned by her…
Which leads me to this: What can I do about all the above? Well, I do not know exactly. Dr O never quite believed, or never believed at all, that I felt neither empathy or love. I am not sure why…But I believe she was wrong not to do so. I think I feel it is unsafe to feel empathy for other humans. In that understanding, I have been visiting CompassionateCooks.com and listening to the podcast Food For Thought that comes out of that site. It is wonderful and informative and everyone should listen to it, for the nutritional information alone, even if you continue to eat animal flesh and secretions. After spending literally all weekend gorging on the 20-45 minute podcast episodes, I have decided that the cruelty-free vegan lifestyle is something I must try, that I can learn to feel empathy for animals first, and if I can do that, I will surely be able to feel it for humans. Because once I can really appreciate that pigs screaming when their throats are cut for slaughter, feel the same pain and fear that I would, and feel it with the empathy that might make it so painful to people, then I can’t imagine I won’t appreciate the pain/joy/sorrow etc that other human individuals may feel under the specific situations facing each. Maybe then I might have the capacity to feel affection and even love. I am 56. Can I hope for this before I die?
I know that many people accept that 9/11 happened as we have been told it happened. They believe that “Osama bin Laden” was behind a diabolical plot by 19 hijackers to attack America, crashing planes into the world trade center and the pentagon, killing thousands and traumatizing the country for years. They believe that the heat of the jet plane fuel was hot enough to melt the steel of both world trade centers’ construction and pancake all floors one onto the next into a neat implosion at free fall speed, just by chance. They believe, in short, what the 9/11 Commission has seen fit to tell us — whatever it has told us, though it stopped telling us anything from the very moment that the towers started to collapse, as if the rest were irrelevant. Well, the following video is something you should watch, and I hope you will watch it all the way through its hour and some more minutes length. It is both unnerving and fascinating, though it will be deeply distressing to anyone who wants to believe in our government’s complete beneficence and goodness (who believes in that anymore anyway?)
If you need any more convincing, I will ask you a couple of questions: what happened to the wings of the plane that hit the pentagon? Yes, I know, the plane itself disappeared in the hole it made into the pentagon, and was “vaporized.” But there is no hole where the wings hit that I can see! So where are the wings? And do not tell me they fit into that hole as this was a BIG jet not a Cessna. Measure the space by the windows. No way could an entire jet and wings fit in that circular hole!
Question #2: What happened to the plane that fell from the sky in Pennsylvania? The one we have been told the passengers forced the pilot to crash rather than follow the hijackers’ orders? We have been told it vaporized upon impact. Say that again? It vaporized upon impact. But what are they saying? Even the Lockerbie crash, which included a mid-air explosion, produced bodies and large pieces of debris. WHERE are the plane and bodies in the PA crash? NOTHING vaporizes in a crash from an ordinary jet flight. You have to pass at very great speed through much atmosphere to vaporize, so only something such as an meteor from outer space might vaporize, but often does not We can only hope that a piece of satellite space debris will. So think about those two inconsistencies in the story we have been handed, and ask yourselves: what else should I be questioning.
Then take a look at the beginning of the film before you write it and me off altogether.
Here he is, a Goose, painted “my way” but only half-finished.
Dear Dr C:
Today when I left your office, I had to get natural bug spray as I walk at the State Park at least once a week and I usually forget to use it for the mosquitoes and ticks…Well, I went in, made a beeline for where I thought the display would be (having really no idea, I had to traverse the whole store before I found it, unfortunately, given that people there — as I told you — were talking and thinking about me and looking at me and wanting me not to buy or to buy certain things as usual…). ButI found it finally. Luckily there were not too many choices and the choice was made for me when I saw the word “local” and “made in Connecticut” as I knew that would please the “locavores” who were monitoring my purchase — a locavore being someone who eats only from local sources.
Despite the fact that it was the most expensive bug spray on the shelf I took the bottle and found the shortest line…No, actually, the line I stood in was the one where the woman before me actually looked at me without a frown, and in so doing gave me permission to stand behind her. I paid with my last ten dollars, though the cashier made everyone wait, impatiently I am sure, because he didn’t believe it cost $9.99 and he “didn’t want to overcharge me.” Hah!
Finally, I emerged from the store safely, shouldered my bag, and headed for the car. But as I stepped near the curb, a red Mini- Cooper drove past me and I understood immediately that this was your car, Dr C, and that you recognized me coming from Whole Foods. This seems entirely reasonable to me, since there was not another patient waiting in the waiting room when I left, so it seems likely that you were heading elsewhere after I departed…And suddenly a red Mini-Cooper seemed only rightly and properly “your car.” But somehow this conjunction boded very ill to me and I immediately became apprehensive, or what my sister, Dr O and my friend Josephine all called paranoid.
On one level I see what they were saying. But on the most profound level, I KNOW that what I know is truer than their objective observations. I was/am certain beyond the faintest doubtful smudge that you are in with Them, capital T. Who are They? They are the osteopaths of H_____, who have had a conspiracy against me for years.
Lynnie – Carolyn — told me I should talk about this with you, so here you are: this is only one of the big problems I have with you at the moment. Another one, which may be insurmountable in the end, is that I want to know why you sit where you do, I mean, way across the room from me. I do not want you to change. Do not suddenly get up and sit elsewhere. I just wonder why your natural choice is to sit, what is it, 10 feet away? Do I, as I fear, repell you? (If yes, is that because of the Osteopaths and what they have shared with you?) Do you fear me? Fear something? I can barely see you. I feel like you cannot see me, which is more to the point.
I need…I need…Oh, Lynnie tells me to do something different from what I “usually do” – be brave enough to ask questions when I should then sit still and listen to the answers, and ask for clarification if I still haven’t understood. To discuss what I feel rather than letting my paranoia get the best of me, not simply accept it and go with it full speed ahead. But I do not know HOW to fight the absolute certainty that things are going on, nor the special knowledge that I have. Zyprexa helped more than anything, but that is utterly unacceptable. Nothing else has made a dent. Except possibly the 35mg of Abilify, which I went back on tonight, just in case…We’ll see.
Enough is enough. I hope you don’t mind that I wrote this. I didn’t want to leave a message on your phone nor ask to have you call me. In fact, though, I may keep this until the 13th and give it to you then, as I am afraid you might consider it a burden to read a letter “off duty.”
Now, that is what I wrote him, after the incident recounted in the letter, but in fact, I have found and called an APRN therapist, a female, who sounds and “feels” more to my liking, though I have not yet met her. Maybe I simply get on better with women than men? But that is not true, as I have had male docs in the hospital I preferred over the female therapists by far. I think, as I discussed it with Dr O, I found Dr C not so warm nor “safe” in the end, nor responsive to what I said. I had trouble talking with him, because he did not actually talk with me, only listened, which is not what I want in a psychiatrist. I do not want that sort of “therapy” — I don’t want to delve into my past or my inner feelings. I have a hard enough time dealing each week with what is happening in my life, let alone the deepest darkest secrets that my mind hides from me and in which I have no interest…My goals in therapy are mainly two: to gain some self-esteem and self-confidence, which despite how I may sound here, I have almost none of, and two, to somehow, somehow, if possible, learn how to cope with and not be so chronically paranoid. Of course, those were Dr O’s aims with me all along, I imagine. But perhaps if I myself commit to them and learn how to work at them, more headway can be made. I sort of think, now that I know what paranoia is and how to recognize it, finally, that I need concrete exercises to practice how not to succumb to my tendency toward it. Ditto self-esteem, which tendency is just as strong, if not stronger, since it produces as much paranoia as grandiosity does. I cannot imagine what form such exercises might take, but I can imagine that they exist. I cannot be the first person to need them, after all.
WE MAD is at the printers but apparently it takes a month to come out from there, so it won’t be finished until May 28th! Geeze, and I thought it would take a week at most…This is going so slow. I cannot see how they could possibly have gotten the book out in February, even had I not been ill and taken a “month off”. At best they would have gotten the book out in April! I should have known that anything a publisher says with a deadline has to be taken with a grain of salt. But I cannot seem to get that through my thick skull and so I still keep on expecting things to be done on time, and keep meeting deadlines that no one else ever does.
I’m in the middle of writing a poem when the phone rings. I read Joe’s number off the caller ID. It’s 9:30 A.M. I set aside my poem and push the button for speaker phone. It’s not that I don’t want to talk, but I know the shortest call will take at least a half hour and most likely more. I am not ordinarily a telephone person. If I had my druthers I’d take email any day, but Joe has no choice.
“Hi, Joe,” I say, carrying the phone into my erstwhile bedroom, now my art studio. “What’s up?” I push the button for speaker phone and set the handset on the table near my newest project, the two and a half foot tall papier-mâché goose that is my first commission. Picking up a brush, I paint while I wait for his reply. Changing gears is always good for my brain and now that I’ve made the change, I find I’m happy to talk.
A distant ka-chunk, ka-chunk, ka-chunk comes back, a pause, then Joe says, “Pam. Pam. Pam.” It’s actually a computer voice named “Fred” (or something) and it is not so different from Hal in the movie 2001, or more to the point, Stephen Hawkings. But it’s one with which I have become terribly familiar. If I did not have a single mini-tape of Joe and I talking in 2003 about Sister Wendy’s art criticism and what we think about a painting by Rousseau, I would have nothing by which to recall his old voice. As it is, I dominate the tape. Closer to the machine and apparently hypomanic, time after time I interrupt Joe in my enthusiasm, even when he does say something. But I can hear him in the background and when I deign to let him, he speaks fluently and without impediment.
The tape was made three years before everything changed, before slurring in his voice turned out to be the first sign that he had amyotrophic lateral sclerosis, otherwise known as Lou Gehrig’s Disease.
There’s a moment like a car-wreck, when your heart is crushed, no air-bag to cushion bad news. It happened like this:
My wrists bandaged from the day before, I was sitting on my hospital bed in the room without any furniture, only an aide guarding the doorway, when several people walked right in: my twin sister Lynnie, my psychiatrist, and the hospital social worker. My first thought about them was, A whole committee? What are they doing here? My second thought was, Uh, oh, nothing good can come from this! The fact that Lynnie was there struck me as particularly ominous; she had more power over me than the other two combined. I feared there were to be dire consequences to my previous day’s act of desperation: was I to be sent to the State Hospital, assigned a conservator, forced to have more shock treatments? Each of those things had occurred before and I could not bear them a second time.
I sat forward, my arms crossed protectively against my chest. “Why is Lynnie here?” I muttered to Dr O, whom I thought of as my only hope and protection, though that hope was fading fast. She didn’t seem to hear or understand. I frowned. The Committee stood, silent, around my bed, towering over me, or so it felt. I cowered. I waited for the blow of some hammer I didn’t want to fall. After several seconds, I couldn’t bear it. “What do you want?!” I finally snapped. “I’m not going to–”
“It’s Joe, Pam,” someone said with infinite gentleness.
“Joe?” You mean this was not about me but about my best friend? Suddenly I understood. Hadn’t I witnessed with concern as Joe’s voice became increasingly garbled over the past 6 months? He had several times choked on food. No one could seem to figure out what was wrong. He’d had test after test. I started looking things up on the internet. I had come across some constellations of symptoms that seemed to match, but the possibilities were simply too dire to contemplate…
“He has Lou Gehrig’s disease.” My heart plummeted; it was as bad as I’d feared. But why call it by what was practically a euphemism? Did they think I’d never heard of Amyotrophic Lateral Sclerosis, motor neuron disease, that I didn’t know what it was? I knew what was in store: with a mind remaining intact and progressive paralysis of every single skeletal muscle, ALS was inevitably fatal.
There’s a moment like a car-wreck. Your heart mangled and torn, no airbag can pillow the punch. No, it was not I after all, but my best friend, dying, the news like a gun-crack at silent dawn. A wail burst from me. I pounded the bed and I hit myself. “I knew it, I knew it.” And I had known, all along, but feared if I spoke the words the terrible truth would become true: somehow I knew it was I who had dealt him such deuces…
Added in Aug 2009:
That night, after the Committee left me in the care of aides still sitting one to one with me, I went to sleep alone in the room cleared of everything but my bed and nightstand and only my journal to write in. I had eaten little dinner, and spoken to no one that evening, only sat numb and silent, or writing by myself in my room, saying nothing to a soul about Joe or myself, about how I felt about either of us… But I was thinking about us, about how Joe, the dear man who was my most loyal and generous and deoted friend, must have felt when he got the news, wondering how he was feeling now…And I wondered how he dealt with it…I could hardly bear the thought of seeing him now, now that he was dying. Things felt to me almost unbearable, unbearably changed.
At the same time, I felt lonely beyond speaking of it to anyone. Despite all the commotion my temper tantrums caused there, and they did, I was alone most of the time trying in vain to control the self they believed i willfully chose not to…In fact I (Oh, I have been through this a million times, and it still rankles, but no more. It doesn’t matter what they thought. They were wrong and if they didn’t know it or care, why should I?) Anyhow, I felt sad suddenly, not just for Joe, but for all of us, Joe, me, and Cy and Lynn as well, who were elderly and Lynn was very frail after having caught pneumonia in Israel sometime earlier (was it just that January in fact?). I cried a little, quietly in bed, until I finally went to sleep. But I slept shakily despite the Xyrem and kept waking, thinking I heard the aides talking about me…which likely they would not be doing, since what would they give a damn about me for? The book, that trusty old book the Four Agreements has finally pounded that into my head: They had their own lives, their own problems… my losing my best friend to ALS, or at least his body being given over to that terrible illness, was surely not their issue, or their sorrow, so why would they care about me or talk about me? (You see, I know that now, but try to convince me of that then and Id have sworn to you you were crazy, of COURSE everyone was thinking about and talking about me! It was clear as the sound of the traffic on the highway! — which come to think of it, might not have been audible either, though I thought it was, all the time..)
Finally, I guess no one wanted to talk to me, everyone being afraid of me, so they enlisted the Jewish Chaplain to come and counsel me, figuring if they could hear me cry, if she could “get me to cry” they would know I was all right…and that they would not worry about me. I know that because — oh, what the hell does it matter? She was very nice, the chaplain, and very ecumenical, and I was gad to hear it as I would not have been happy with any religious rant…
When Joe did visit the next day, he looked great, smiling and almost joyful. It was weird. But he said that he felt fine, and he viewed the illness as a great adventure, even the propest of dying didn’t faze him. Besides he said, he was on the ten year plan…He figured if he could last three years, outliving expectations, then live five, he’d be good for the unheard of ten, maybe fifteen, or even twenty, who knows….And I believed him, just listening to him tell me his plans.
You know, I think his very optimism has carried him far. See how is he is now, but he hasn’t gotten pneumonia a second time, quite despite the ICU’s predictions of constant recurrences and his making an early decision to die…No, he had one infection with C. dificilis, but after that, which was cured, despite its reputation for hanging on and on, he seems to have been quite well, and very well taken care of. NO bed sores for one, which to my mind indicates excellent care of someone who hasn’t left his bed or his supine position for more than two years…Which brings me to the case in point: he has made it three years! He was diagnosed in August of 2006, after havaing been ill since at least January. And it is now Aug 2009. So that makes it Three years he has survived this crummy disease. I asked him how his movement was and he was able to make some shaking movements so he has some muscle fibers yet…All is NOT as “gone” as I’d thought! He even has a twitch or two in his fingers…So he could use switches for all sorts of things, if he would let the staff know he had the use of those muscles. But he doesn’t, for some reason. When tested, he lies completely still and doesn’t let on that a single fiber remains active. Its as though he doesn’t want to move a muscle fiber any more, doesn’t want to live, physically, only wants to live in his mind…Forgive me for saying this, but it felt that way from the moment he was hospitalized. He simply abdicated moving once he got pneumonia, he stopped fighting and surrendered completely.
Why do I say that? Well, he never again tried to walk or move his arms or do anything that he could do before he got ill, and I think he probably could have done them or been rehab’d to doing them, had he simply wanted to. But I think being sent to the Hospital where he would be on a vent and trache for the rest of his life gave him permission to take on the role of paralyzed patient early, and he saw no other way…Perhaps he didn’t know that there would be other freedoms, like the step down unit and going outside with a portable ventilator, if he had tried harder to use the muscles he still had (after all, even with pneumonia he had been walking and driving and doing everything a non-sick person does, though with increasing weakness and difficulty. He had not yet begun to use a cane and had only just caved to getting orthotics made for his ankles…). I know he was terrified of being wheeled into the dayroom and left there to do nothing all day but be captie audience for soap operas and cartoons, but he wasn’t even trying to let anyone know he had muscles for them to train, or rehabilitate….so no wonder no PT therapists came for him!
Oh well, it was his choice, unconscious or not. It is all water under the bridge now, I guess. I just feel bad that he won’t even now let anyone know that he has this remaining ability to, say, shrug that could be useful…I have to beg him to blink his eyes to say yes, when we are using the alphabet board, but it seems to me that there would be other easier ways to communicate with us without the ERICA, if he would admit to the SLP (Speech-Language Pathologist) that he had muscles they could use to arrange something, hook him up to something.
Enough of this for now. I have a headache and this ain’t helping nothing.
Before I relate the tale of my trip to DC I hasten to add one addendum to the discussion below on TLE: Dr C said absolutely nothing about schizophrenia and TLE and possible misdiagnosis. Nothing whatsoever. ALL he mentioned was that my ECT apparently triggered — he used the word kindled — classic TLE in my brain, as evidenced by the pattern of onset of the olfactory hallucinations and their response to treatment. ALL the rest of my theorizing about schizophrenia and TLE has come from my own conjectures and readings that have spun off from that one statement and not from a single thing he said or implied. Please understand this. He may not have meant and may never bring up the subject at all…The question remains, Will I?
Now then, about my solo flight, my DC adventure:
On Wednesday, Josephine drove me to New Haven and I took the high speed train, the Acela – going at a rather low rate of speed it seemed to me, most of the way – to Washington DC. The trip down was uneventful, except that in my anxiety to get a seat, I completely forgot to tip the porter who helped me get my bag down and up the flights of stairs in the station (the escalator wasn’t working). I had a five dollar bill in my pocket all ready for him but at the last minute plum forgot…for which I felt guilty the entire journey right ip until I got back into Jo’s car at the end of it…and even now, a twinge remains.
The four and a half hours passed quickly as I had to review the new edits the copy editor had made. It wasn’t announced that we had arrived. People just stood and started getting their things from the overhead rack. I had to ask if we were in Washington. Finally, off the train, I followed where everyone else seemed to be going, managing not to go near the uniforms with the dog, though it occurred to me that maybe it was where I was supposed to go, because I wasn’t going where the cars were, was i? Luckily just then, Sara waved to me from the opposite door , and I saw and recognized her so that misstep was averted…It occurred to me, however, that we have become like a police state, what with armed guards and police dogs standing around in train stations, only supposedly to protect us (after all, they tell you DO NOT TOUCH THE DOG!)
That first night we spent just getting caught up on Sara’s recent travels as she is head of an “abroad program” at a university there. Then the next day, I slept till 9 and she went off to work. At noon I was picked up by a friend of Sara’s who drove me, with a few mishaps, to the train again, for my trip to MD to talk to a senior psychology class at a small, private college in a town about an hour outside of Baltimore. During the drive to the school, I began to feel weird — thought it was low blood sugar or simple sleepiness– and asked if we could get some coffee once we got there. I felt too fuzzy to even pay for anything, couldn’t think straight to talk, just eating to prevent myself from fainting. Finally, it was time to go to the class, and so I pulled myself together, took a last bite from my muffin and threw the rest of coffee and muffin away.
In the class I gave my talk and did the Q and A with nothing untoward happening, except that I had to stop when the feelings reoccurred with fatigue near the end, at around 4:15 (the class ended at 4:30 so I made it almost the whole time). All the questions were really good, made me think. The only one I felt I did not do justice to was the one about Lynnie and whether or not she needed therapy and medication (!). If only they knew her and Sal…But in any event, I ought to have explained how psychiatrists are ordinary human beings with ordinary human emotions and flaws and faults, not superhumans, and they get angry and jealous and pissed off etc just as anyone else does. Jealousy in and of itself is not an illness, just an uncomfortable feeling that I know Lynnie has dealt with in her own professional and personal therapy over the years (as I pointed out all psychiatrists see their own therapists first). As for medication, she’d be the first to tell anyone she swears by it, and would not want to do without it!
After that class, I was blitzed completely, and could barely sit up straight in the car heading back to Baltimore and the train, and then my head blossomed into a migraine on the train. When I met Sara in the station again in DC I was utterly exhausted. I ate a little supper but basically fell asleep by 9pm and slept through until 9am.
Friday we took it easy. We drove around the Capitol area and stopped to walk into the Supreme Court, and walk around the White House. But we didn’t spend a great deal of time anywhere as the light was a brilliant blinding white and the temperature pushing 75°F. Also, that night I had a poetry reading scheduled at the Potter’s House Sounds of Hope gathering
The Potter’s House in DC — a bookstore and home-cooked-food restaurant, with a Let’s All Help Each Other theme…It was great to go in the door and find a seat at the table and know every, or nearly every song sung. I wasn’t scheduled until the last of the night, and was afraid everyone would leave before then…and they almost did until the MC asked some to stay for “dessert” ie me. So I finally had my reading and I think they liked my stuff…Hope they did, I didn’t hold back or read only easy things at any rate…
THe rest of the visit went supremely well, as Sara and I get along great. We ate in an Ethiopian restaurant one night, and at a Spanish open air market for lunch the next day. Only bad aspect of the visit, and it could not be helped, was that I brought a cold with me all unawares, so I was almost, but not quite, miserable the whole time. In point of fact, I was miserable only ONE night of the four, and miserable not a single day there, thanks to Sara’s good company and hospitality, plenty of kleenex and good food, with no pressure at all to do anything (once the class was over with — which was MY pressure entirely).
All in all, a great trip. Some paranoia developed on trainride home, with feelings/suspicions/knowledge that the people who sat down next to me in the Acela were accusing me of having stolen one of their tickets…to the point that I started talking to myself and had to get all my things and move seats to somewhere I felt more comfortable. Nowhere really felt comfortable after that, though, since everyone was looking at my book and what I was reading, so I had to switch to a harmless magazine. Finally the guy sitting in the single “disabled” seat at the back of the car got off at Grand Central so I quickly snagged that, having a disabled-discounted ticket myself. Things ought to have calmed then, only then I thought people were looking at me and wondering, Why is she sitting there, she doesn’t look very disabled to me! I was very glad to detrain at New Haven I will tell you that. But how was I to get my heavy “carry on” wheeled bag down the high stairs at the station? No way was I able to lug it myself, especially not carrying two other bags, and one being my purse/tote bag I could not see leaving it alone while I took the bag by itself.
Just then a burly older man, lifting his own carry-on in one hand, stopped and said, Let me get that for you. “Oh, would you? Thank you so very much!” I replied. Without a word, he took my bag by the vertical handle and carried it swiftly down the thirty of more steps to the bottom then walked away before I could thank him again. Oh, what a lovely gesture. I was more relieved than I could say, though it was easy enough for him, and I daresay he is used to doing it. I was very glad to have been today’s recipient of his gallantry! The rest of the way was easy, as I could draw the bag on its wheels and take the escalator the rest of the way. I swear I don’t know how they get away with making these trains to inaccessible to the handicapped. They are practically inaccessible to any but the very young and strong, so far as that goes…And nearly every station had that long staircase leading to the platform, except for, say, DC, which is flat from parking lot to train, and even minus a step getting onto the train itself.
Welp, that was my much anticipated, much worried about adventure and I’d say it went just swimmingly, despite cold and despite migraine and intense fatigue at the middle to the end of every day. One thing I did learn that was helpful was that eating three meals a day was good for me, rather than letting myself forget to eat until late in the evening and then cramming down the calories. Today I even tried to follow the pattern I did with Sara, and started the day with a healthy brakfast of fruit, cereal and yogurt. Then I did what the visiting nurse has suggested for many many months: I set a timer to remind me of lunchtime: I had an onion roll and dried fruit at one o’clock. At 6:00pm or so I plan to have…well, some mix of green beans and onio ns, cheese and soymilk plus strawberries and black berries with yogurt for dessert. Mainly because that is all I have at the moment. Or I will have Irish oatmeal made with soymilk, plus dessert, which would be a lot easier! I hope I can keep this regimen up, as it cannot but help my stamina, if it does nothing else.
In my further reading on TLE I have learned that while “TLE hallucinations” can be ecstatic visions or the sight of threatening people or actually hearing voices, usually they are of brightly colored lights or visual distortions, like objects appearing larger or smaller than usual, hearing music, feeling insects running under one’s skin etc. In addition, there is the awareness that these are hallucinations, though not always. A personality seems to be associated with TLE, some people think, though it is not clear to me how established this is as fact. And some with TLE and without it claim that creativity is directly related to it. Hypergraphia, the compulsion to write, write, write is definitely associated with TLE, along with a compulsion to draw or do art or think/talk about religious subjects. Heightened emotional state but reduced sex drive. Something called “stickiness” is described, which I construe as a kind of tendency to glom onto a person or to exhibit an extreme loyalty. Also, there is seen irritability and gross personality change, rages, a tendency to fly off the handle or perform outrageous acts like stripping in public etc.
In TLE you can have feelings of euphoria and floating as much as feelings of impending doom. A feeling of “rising into something” or of something rising through one’s body is a common concomitant of a TLE seizure or aura. An indescribable feeling according to many. And you can have psychosis, chronic or acute.
interestingly, while EEG is notoriously poor at picking up TLE, there are often punctate signal hyperintensities (precisely the abnormalities I have had at least since Y2K) seen on MRI in those with TLE in the book I am reading — SEIZED, by Eva LaPlante.
Now I do not want to jump the gun, because too many of my symptoms have been chronic and disparate, not following a single pattern of seizure, whereas at least one authority claims that once you have one seizure, all others look similar. Indeed, while you might say that Grey Crinkled Paper arose from a seizure, and the jacksonian seizure with Novocaine were definite, and too the feelings of impending doom were also seizure activity while I was taking Clozaril and other antipsychotic medications, the others, with different patterns yet, could not have been,since they were more varied even than those. The olfactory hallucinations had to have been seizure associated too, but then where does it all stop, and where does the notion that one seizure sets the pattern for all others go?
And yet even conservatively I myself would count all those instances as seizures even if I were not going to count anything else as seizure-related right now…So what to make of them, and the fact that ALL were so distinct and different from one another:?
Does it make the whole thing, the whole illness over all TLE or schizophrenia? Can you in fact have both, or does having TLE suggest that the schizophrenia was a misdiagnosis all along? And how does one know? Certainly, I have one trait that points towards the TLE diagnosis: I do well inbetween “attacks” of either illness, and seem to have not suffered any deterioration in brain function cognitively. Not massively. Though my memory and such is faulty, that is often the case in TLE itself!
I don’t have the slightest idea, but I suppose I will find out as the weeks go on and I continue to discuss it with Dr C, as I anticipate I will. I do plan to see him once Dr O leaves… I liked him enough to do so at any rate, and I liked this idea enough too, to want to pursue it too. I t will be very interesting to find out what happens, where it leads…If it redefines me entirely, I wonder how I will feel or deal with it?
I want to begin by quoting two websites on the symptoms of each. First the Mayo Clinic on the symptoms of schizophrenia and then Richard Restak’s excellent article on TLE.
By Mayo Clinic staff
In general, schizophrenia symptoms include:
* Beliefs not based on reality (delusions), such as the belief that there’s a conspiracy against you
* Seeing or hearing things that don’t exist (hallucinations), especially voices
* Incoherent speech
* Neglect of personal hygiene
* Lack of emotions
* Emotions inappropriate to the situation
* Angry outbursts
* Catatonic behavior
* A persistent feeling of being watched
* Trouble functioning at school and work
* Social isolation
* Clumsy, uncoordinated movements
In addition to the general schizophrenia symptoms, symptoms are often categorized in three ways to help with diagnosis and treatment:
Negative signs and symptoms
Negative signs and symptoms represent a loss or decrease in emotions or behavioral abilities. They may include:
* Loss of interest in everyday activities
* Appearing to lack emotion
* Reduced ability to plan or carry out activities
* Neglecting hygiene
* Social withdrawal
* Loss of motivation
Positive signs and symptoms
Positive signs and symptoms are unusual thoughts and perceptions that often involve a loss of contact with reality. These symptoms may come and go. They may include:
* Hallucinations, or sensing things that aren’t real. In schizophrenia, hearing voices is a common hallucination. These voices may seem to give you instructions on how to act, and they sometimes may include harming others.
* Delusions, or beliefs that have no basis in reality. For example, you may believe that the television is directing your behavior or that outside forces are controlling your thoughts.
* Thought disorders, or difficulty speaking and organizing thoughts, such as stopping in midsentence or jumbling together meaningless words, sometimes known as “word salad.”
* Movement disorders, such as repeating movements, clumsiness or involuntary movements.
Cognitive symptoms involve problems with memory and attention. These symptoms may be the most disabling in schizophrenia because they interfere with the ability to perform routine daily tasks. They include:
* Problems making sense of information
* Difficulty paying attention
* Memory problems
Complex Partial Seizures Present Diagnostic Challenge
Quotes from Richard Restak’s article in Psychiatric Times (Sept 1,1995)
Since the condition [Temporal Lobe Epilepsy] may involve gross disorders of thought and emotion, patients… frequently come to the attention of psychiatrists. But since symptoms may occur in the absence of generalized grand mal seizures, physicians may often fail to recognize the epileptic origin of the disorder.
In most instances, the emotion experienced as part of the seizure is a disturbing one variously described as dread or a feeling of impending doom; in others, the emotion may be experienced as pleasant or euphoric…Descriptions such as “a wave,” “something flowing upward” are often employed.
Controversy continues as to the validity of a so-called temporal lobe personality… Outbursts of irritability, rather than frank violence, are hallmarks of TLE.
[R]are presentations include anorexia nervosa (Signer and Benson 1990), multiple personality (Schenk and Bear.
Most common is a global hyposexuality (deficit of desire and feeling]…
TLE also may be responsible for chronic rather than just acute psychoses. While any of the symptoms of schizophrenia may be encountered, paranoid traits are the most common. TLE patients can be distinguished from schizophrenic patients by the maintenance, when not acutely ill, of warm affect and good rapport…
The treatment of TLE is complicated by the fact that many times improved seizure control via anticonvulsants leads to deterioration of the neuropsychiatric status. Schizophrenia-like epileptic psychoses often emerge when anticonvulsants are normalizing or improving the seizure activity…
While the illness is an epileptic one and treated by neurologists, many neurologists remain unfamiliar with and even uninterested in its neuropsychiatric components. But by ignoring the experiential symptoms, the neurologist deprives the patient of the opportunity to coherently integrate all aspects of the epilepsy. It may also cement the patient’s misconception that in addition to the epilepsy, he or she suffers from a “mental illness.”
I was going to go into a deeper discussion of this, but cannot at this hour (11:15pm as I must go to bed now. But I plan if I can to do so tomorrow. And if not then, well, then ASAP. Meanwhile, I would have told my schizophrenia.com readers to think back on all that I’d written over the years, and tell ME what is going on…but you cannot do that, not knowing me as well as all that. Needless to say, however, I do think there is reason to suspect that the second diagnosis might have some possible validity, though it is hard to see how all of my symptoms can have been only TLE…But wow, would I be relieved to have a name for it if they were!
There is an interesting discussion about schizophrenia and TLE etc here: Schizophrenia and spiritual experiences: Is there a link? http://livewithwonder.wordpress.com/2011/10/19/schizophrenia-and-spiritual-experiences-is-there-a-link/
Them’s the three subjects I would like to discuss tonight, if I have time to get to them all before I needs must get to bed.
I have been reading about prisons recently, a subject that has always interested me, but about which I have not been able to read much due to my general lack of attention span and an inability to stay awake enough to get through any printed material longer than a poem. Those two still affect me, but due to a change of narcolepsy medication forced on me by my Medicare Part D insurance company, the stronger drug I take now does keep me awake (who knew?) and so I can read more — and when I fall asleep reading, I read again after I wake. In such manner I was able to rather quickly read the 2004 book, GATES OF INJUSTICE: The Crisis in America’s Prisons by Alan Elsner and am halfway through another book, even more recent, written by a prisoner. Then there are the manuscripts I have by my pen-friend, 44 year old prisoner serving ” life without hope of parole” since age 18. In them, both fiction, non-fiction and dramas, he gives a completely raw and naked picture of life behind bars in one of the nations toughest and more decrepit prisons, Walla Walla, in Washington State. The prisoner, I will call him Lance, is perhaps the best writer and best source of all three — certainly his auto-didactics over the past twenty some years has worked wonders, as he is now articulate and highly skilled. In terms of material, Lance of course has what I need and tells a better story than the other prisoner, despite his published- by -a -St Martin’s imprint book.
That said, what have I learned? Well, in brief, that Abu Ghraib and the behaviors we know about there and claim to deplore, barely scratch the surface of what goes on routinely in most prisons in this country, in my state as well as yours. And if not in every state, then those states ship their overflow to others, where they are then treated the same as residents…But my state has, among other things, a reputation for using restraints and seclusion in prisons as in hospitals much too freely; naturally prisoners (and to a degree, though less so, patients) have suffered grievously as a consequence.
Lance writes about the details of routine strip searches and the deliberate humiliation to which all prisoners are subjected as a form of dominance assertion by the guards. He writes about the deadly abuse of power in violent cell extractions and beatings and use of SMU (“the hole”) in which some remain for years and from which some never emerge. He tells us about his life as a juvenile, sent to foster care and from one abusive “home” to another abusive “home,” where it seemed the only reason for taking him in, as well as others, was the money paid for each child by the state, money not actually used for the children’s welfare, but for the home owners’ welfare only. The foster children were routinely starved, beaten and forced to work at slave labor jobs instead of going to school, or to work after and before school if they did. Worse, if he ran away from foster care, Lance was sent to juvenile hall, and then to Reform school for being intractable…In other words, as a ward of the state, he gained a criminal record simply by virtue of the fact that his parents died.
But as a ward of the state, he knew nothing else but foster care, and then juvy and reform school, so what else was he to look forward to but…Prison was not unexpected and when it came, it was a shock but not a big one. It wasn’t all that different, after all, from juvy. Now that he’s been there, in Maximum security, and now I believe, medium security, for 20+ years, he has a slight hope of reprieve hope that his lawyer might be able to get him if not out then a new trial. He did not commit the act that earned him the sentence. He was simply “there” at the same time, and considered a conspirator by association. In any event, I believe that people can change, and I think he is not the same kid that went to prison. I hope he is freed one day and that he has someone waiting for him who has the patience to teach him the ropes about society and how to survive, because god knows he will need it. And a place to live and a job and and and…So much is stacked against prisoners when they become ex-cons. They can’t get welfare or subsidized housing, or work in some fields, good paying fields, and most employers won’t hire them any way, and they cannot get food stamps…so what do they do? Many do not have drivers’ licenses, and would Lance even know how to drive? How would they obtain a legal id? And for what purpose if they can’t get a job etc. But surely they would have something, getting out of prison, to show to police checking on them etc. Can they collect SS if they do end up working for some time? Are they eligible for that? It just seems so impossible with all cards stacked against success that recidivism seems sometimes the ONLY recourse, and return to prison almost appealing after a certain point.
I saw the lawyer, Sharon today to give her a poetry lesson, one in payment for the legal advice she gave me so freely. I’ve been worried lately that she was angry with me, and not letting the secretary answer the phone, and only answering it when I called with my cell phone, because that one doesn’t have my name attached to the phone number. In fact, I was certain that I would appear there today at 11am and she would not be there, that I would have been stood up, so to speak. Deliberately so, because she wanted to teach me a lesson, my having missed my appointment last time, due to my hospitalization. I was really afraid of this and afraid even to open her office door this morning, lest I read anger in her eyes, or a plot therein.s
But no, in fact she was happy to see me, and when she saw that I had prepared a lesson on the Haiku, she was thrilled. She said he had always wondered what Haiku was and how it was constructed. Not only that but I had planned some writing exercises . This too pleased her no end. So when we finished, she said, That was terrific, I had such a good time! Which made MY day too, I can tell you. She thought I “read people well” and said so, thought I had somehow intuited her interest in Haiku. That was when I had to tell her what I had really anticipated when I came in today. This surprised her greatly, but she needed to hear it, so she would know how wrong her impressions of me could be. I left, but not before she asked me to come back in June when she would have more time and we’d do more poetry. She was really psyched, which boosted my mood all day.
My plans are all coming together for my upcoming trip to Washington DC. If anyone out there is planning to be in that city on Friday the 17th of April, I will be doing a poetry reading at the POTTER’S HOUSE, a restaurant and bookstore at around 9pm (the “show” a fund raiser for My Mother’s House (donation $15) starts at 7pm) But I will upload the poster next entry. Other than that, I have to pack, and make sure I have my ID and disability letter and SS card for the train, and and and,.. I have made myself a list over the last three days, adding to it as I think of things I need to bring. I hope that way I won’t forget anything essential…I will not have any books to sell, alas, as WE MAD is still held up at the printers. But no matter. I will have some business cards and postcards and that I have had printed (free!) and I will give those out gratis just to remind people the book can be pre-ordered.
Enough! It is 11pm and I MUST go to bed. So sleep well all you on the east coast, and you on the other coast, don’t stay up too late! Everyone else, I know you are too sensible not to try to sleep the proper amount, if you can…Remember, if people get less than 7 hours, they tend to gain weight. (A true statistic!) In any event, sweet dreams to you all.
I’m very proud of this link, even if the two last lines are missing from the poem*…Enjoy! It was chosen as Poem for Today, April 8, 2009.
* I see my email to them got them to emend the poem at once. Pretty decent. No errors now.
Well, I said I would get back here and tell you about my first session with the new psychiatrist, but life got away with me and I haven’t had a chance to until now.
The first thing I noticed, walking into the waiting room, which was both good and a little off-putting, was that the radio was playing WNPR, national public radio. Now the good part of this is that it was indeed NPR, the news and liberal-leaning talk radio that I myself listen to. This boded well, I thought. But the fact that it was talk radio at all, rather than soft music I found by itself rather strange. I mean, what if someone didn’t like or agree with those points of view? It seemed a rather unfair thing to be throwing politics and other controversial subjects into the air right before someone was to see a psychiatrist. Now, right here I am tempted to play shrink to the shrink, and analyze why he might have done this, but in point of fact I have no idea and should not presume to know or even guess. After all I only met the man once.
So I noted this, and felt, well, those two ways about it, then filled out the forms waiting for me, and sat back to wait. It wasn’t long. He was only about 5 minutes late, if that. Then he ushered me into his office, which I noted at once was set out in a big square of large immovable chairs and a sofa. He told me to sit wherever I wanted. Uh, oh, I thought. How can I choose a chair? I had no idea, so I sat immediately in the one touching my leg, which happened to be the one farthest from his desk. He sat down in the chair directly opposite me, about ten feet away, or so it seemed. Maybe it was six feet? Hard to say now, but it felt very far away. I think I will try a different chair every time, maybe until I find one that feels right, or a different one according to my mood, I dunno. All I know is that that one felt wrong for me that day…
I didn’t notice much more about the office after that, not even the colors. I didn’t look around, not with my eyes. I mean, I did seem to look around, in that my head may have turned a couple of times, swinging from side to side, but my eyes didn’t actually take in anything. I was just “gazing into the distance” because I find it hard to make eye contact.
I was going to say, He asked a lot of the usual questions, but did he? Honestly I cannot say now what he did ask. Except that he started out by saying, What brings you here? Pretty standard question, but for the fact that I knew Dr O had spoken with him and that I thought he knew why I was there…So I just said, I needed to find someone to “take her place.” I didn’t mean in any sense but the literal: I needed another psychiatrist. No one could take her place in any other sense. At one point he mentioned that he knew about my book, or perhaps said that he did in response to my asking him if he knew about it. I asked him not to read it, yet, and he agreed, though now I am not sure why. Why not have him read it? It would get a lot of things out of the way. And maybe he would not have read it anyway, was just curious as to why I did not want him to read it myself.
At some point, I cannot recall how, we got onto the subject of my olfactory hallucinations, either gone now or controlled well by lamictal (it is hard to say, as I still reguarly get “whiffs” of burning smells that are unexplained). When I explained the genesis of these hallucinations — a week after ending ECT, starting first as soapy smells and then progressing to burning rubber, to the point where I could not eat anything but tomoatoes and apples, and under what conditions they abated, ie with my taking tegretol (I believe), he said it was absolutely classic for temporal lobe epilepsy.
But, I said, I’d had an EEG at the time, and they said they’d found no signs of seizure activity.
TLE is often missed on regular EEG, he said. Then he told me the kind that usually picks it up, but I failed to follow him…it got too complicated and I was still stuck on the TLE thing. No one had actually said to me Temporal Lobe Epilepsy before. Oh, people had said “seizure activity” many times, in many different circumstances. Like when I took Clozaril and Seroquel. Always, my side effects were Dx’d as “seizure activity” — and then ignored. Ignored! The doctors would simply have me continue to take the drug and ignore what they themselves called “seizure activity”. Is it any wonder that nightly episodes of terrible feelings of impending doom, and what I described every week I saw my therapist as the feeling of my brain building to a terrible electrical threshold that only sleep staved off — or did it? I wonder… Is it any wonder that I wanted to quit both drugs and did so as soon as I could?
But more than that, I’d had a seizure when my wisdom teeth were taken out. I was about 23 and I lways thought it was because of too much novocaine, though that was only my impression. Anyhow, in the middle of the procedure, one arm and one leg started moving up and down mechanically while I sat in the dentist’s chair. I remember the dentist saying, “She’s seizing” then “__ mg of Seconal,” and that is all I recall until they resumed the procedure, which I believe they did do, unless they were all finished…I cannot remember now. In any event, I did go to a recovery room to sleep afterwards, but I do not remember my parents, with whom I was still living, being told anything, or reacting in any way when I told them. Which I find strange to this day, seing as my father is a doctor and I had just graduated from college and was home to study pre-med courses myself.
Anyhow, I have been reading up on this and have even read a little about some mental illness being related to TLE, esp bipolar and even schizophrenia. Went looking for material on the internet, but have not found a great deal on these subjects, at least not that is available to me. It may be that there are specialized journals that would deal with them at greater depth etc but usually the cost of a subscription is prohibitive, as are most texts (over $100). The public library is useless in this regard as well, having so far as I could see, almost nothing on the subject except a few books written for parents and/or children. Finally, I found a couple on Amazon, and sent for used copies. We’ll see if I get any answers.
But I was talking about the new psychiatrist, Dr C. He is tall, his hair seems gray but could be white blonde, and I cannot for the life of me tell how old he is. Not too young at any rate, I do not think. He seems okay, will probably grow on me, so to speak. I had no immediate reason not to like him and I did like his telling me about his opinion of TLE so openly, even if we really have no proof in terms of an EEG.
I will see him again at the end of April, and then we will see. It will be the first time I have seen a male psychiatrist in a very long while, and I don’t know how that will be. but what the hey, I’m willing to try.
When I was in the hospital this past February, I made the tentative decision to leave Dr O, despite having seen her and indeed depended upon her for nine years. At the time, I was feeling, I dunno, burned? Not in the sense of angry but in the sense of, uh, oh, I’d better cut out while I am not too hated, because soon she really will be sick of me and won’t remember anything about me but how much she hated me…Where did that come from? Well, you might laugh, but I did not. It came from having called her on her cell phone, as she has encouraged me to do, on a working day, and reached her instead of her answering machine. I had wanted to know if she had informed the book publisher about my hospitalization. I was taken aback by the sharpness and peremptory note in her voice as she answered. It did not sound like her .
“I, uh, it’s me, Pam, I was calling to –”
“Yes, Pam, what do you want?”
“It sounds like you are sick. I’ll call back later. I was expecting your answering machine anyway.”
“Tell me now. I don’t want to have to answer my machine or call back later.”
“But it is clear you are in a bad mood. I don’t want to talk to you now…”
“I’m not in a bad mood, I’m ill and you are calling me at home.”
“How was I to know that. It is a work day and this is your cell phone, you shouldn’t have picked up if you are sick. You are allowed to be sick you know…”
“Why did you call?”
So I told her, then when she said she would call the Press, I hung up. But I felt terrible, because it was clear that she was angry and it felt personal, felt as though she was angry at me. But I didn’t know why, could only imagine, and so I did, I came up with 100 reasons why she might be angry with me, hate me, want to get rid of me or leave me…This is important, that reasoning, because is lies directly beneath my first impulse to leave her, though it is not and was not in the end my primary motivation. Because I feared she wanted to leave me, I determined to leave her first. It was an old old story, and not a healthy one at all.
But as I said, in the final analysis, it was not really the reason I wanted to find another doctor. No, that was for two other more reasonable, um, reasons: one was that I did not want to have to traverse the state to see her any longer. It took me all the morning and part of the afternoon to do so, which ended up exhausting me for the rest of the day. That, plus the fact that I did not even drive myself, so it cost me extra to pay Josephine to drive me there and back. But more than that was the fact that the doc at the hospital was so – what? not into power, not into authority, or at least played it that way. He would ASK me what drugs worked for me and at what dose. And then proceed to prescribe precisely those drugs, not just ask me and then ignore what I said. Dr O never asked me what drug I wanted or what drug worked for me, simply decreed what I would take and then asked me to take them. She only listened to me when i refused to take them, perforce.
Now, this is not to make Dr O seem like any sort of dictator, because in fact I was very resistant and noncompliant, and often refused any med at all that seemed to help, so I could be infuriating. Also I was in and out of the hospital when not taking her meds. It was only she who had the patience to work with me for 6 years to finally find a combo that worked for me without any undesirable side effects (except a little sleepiness) so that I’ll take it willingly. Nevertheless, I think she is so used to my being ill that she cannot actually treat me like an equal, and someone who might be getting better..For instance, I really need to be able to call my shrink by his or her first name, esp if they call me Pam, which i would insist upon (because I cannot feel comfortable sharing personal information with someone who still calls me Miss Wagner!). It is patently ridiculous at my age that I should call someone twenty years younger than me by a title when they do not use one for me…But I would rather be Miss W than Pam if he or she is going to be Dr so and so at age 35-45!
Anyhow, where was I? Reasons why I was leaving Dr O. Yes, well, be that as it may, I had a feeling as well that she herself was not going to be staying. Don’t know why, but I just had this strange niggling feeling that somehow it was time, or would be. Then I mentioned, in my first appointment post-hospital that I might need to have some help finding a local therapist. She did not seem surprised or if she did, did not object at all, mentioned in fact that she was leaving her sleep practice in June, which precluded my continuing on as her sleep patient in any event. That gave me the first indication. Then when I returned two weeks later, which was last week, I said to myself, I know she is ending her practice of psychiatry as well, because she is moving, moving away, moving, well, inland…I knew this with absolute conviction, not delusionally. I knew I could be wrong, and I was hoping I was. But somewhere deep down I suspected I was not.
I was so exactly on the money it was uncanny. She was moving, was ending her practice. I asked her if she was moving inland. She made light of it, said she wasn’t going closer to the coast if that’s what I meant, but that wasn’t the point of moving. I said I doubted that…And she said nothing. But it scared me, as it always does, because I still feel that I will drown when Antarctica and Greenland melt, as they will MUCH sooner than any scientist now predicts…
I will not continue on that path at this time, however. I was speaking of changing therapists. So now I have made an appointment to see someone new, and only 10 mintues away from me, close enough that I can actually drive there myself. Very close, in fact, to the Vision Therapist I used to see. I do not know how to interview a prospective psychiatrist, or to doctor shop. All the other switches have simply been handed me, and they stuck, or I stuck with them as they seemed reasonably good, and i liked them. But this time, I have no one to hand me someone with their imprimatur and am on my own. I don’t know how to do this. Will I know who is good, who I can trust? I am very bad at that, trusting all the wrong people. Well, this person at least comes recommended by someone Dr O knows well, or at least knows. That ought to count for something. But it is a he, and I have not seen a male shrink in many years, nor had a good experience yet. Dunno how that will go.
But things change and so do people. The doc in the hospital was male, both of them were, and I liked them both. So maybe this time I could tolerate it. Dunno, but we’ll see. If I can, I will write again on April 1, which is when I have the consultation. Will let you know how it went, if it turns out to have been productive in any fashion.
Note: All the information that I have been reading points to two things that I find very disturbing: one is that Inderal (propranolol) which I take for akathisia, a side effect of many psychotropics but for me of Geodon, apparently and quite effectively “blocks traumatic memory.” Now this would be fine, except that it seems to block the formation of emotional memories of ALL bad events, or at least block the bad emotional memories of the events, such that if you recall the event, you cannot actually go back and feel the way you did at the time. Now I imagine that this would be desirable for most people, who usually do not want to suffer from their memories, but I feel deprived of so much of my life, having been on Inderal or a beta blocker (the same class of drugs) for thirty years. I never knew why i could not quite feel the memories I wrote about the way others seemed to be able to feel their memories…I can see them, but I am outside of them, looking on. I feel nothing. I literally look in and see myeslf from the outside, that is how detached I am from the person I used to be, all because, as i believe, I have no emotional recall of the event. Which is why I want to stop taking the inderal…If my blood pressure rises (it is also effective for that) then I will deal with it another way, but I need to see if not taking the Inderal brings back something vital to my memory.
Number two is much more problematic, because it involves the very medications that keep most of usw with this ilness sane and this side of an institution: most antipsychotics and even the SSRI antidepressants block dopamine to a greater or lesser degree. Now no one knows where or even if people with schizophrenia are actually suffering from an excess in dopamine. That is the theory and it may be that dopamine is involved in some fashion but it is not the whole story, The newest drugs are now working on glutamate, another neurotransmitter entirely. Either neurottransmitter may not affect the entire brain the same way. What is certain is that the drugs tamp the dopamine levels down. Supposedly this is only down to a “normal” level, but who knows what a normal level of dopamine is? We know that dopamine is the pleasure molecule, that without enough of it people become thrill seekers, needing highly exciting situations in order to experience pleasure. But what does it mean that many SSRIs cause sexual dysfunction and/or loss of interest in sex? It implies that with suppression of dopamine (and cure of depression?) the dopamine falls below “normal” producing this lowering of normal pleasure and pleasure-seeking.
It is well known that many fewer people with schizophrenia marry, have children or even fall in love…I myself feel detached and cool, feel no particular sexual urge or even the desire to meet a significant other, let alone pursue someone with marriage in mind. Now I’m wondering if this was not me, not really, so much as the anti-dopamine drugs I’ve been taking most of my life…What a tragedy if the reason I feel no love for anyone is the lack of dopamine the drugs forced on me! What a pity if the coldness I feel towards all of my life and all people in truth, is due more to my drugs, the inderal as well as the anti-dopamines than to any deficient genetic make-up . It’s like the wind farms and the sonar of nuclear submarines etc. We build them as if they are reasonably green, having zero effect on the enironment. only to find out years later that the effect was devastating. (I suspect that the wind currents and subsonic vibrations given off by mega-windfarms might be discombobulating our honeybees and even undermining the vitality of our bats (both dying off alarmingly in 2009). What I mean is, we have developed all these so-called miracle drugs for schizophrenia and depression etc but do we really know what they do to the person, quite apart from the alleged antipsychotic effects? What about other costs to the individual? What are they and has anyone thought to look for them? Does anyone have a choice in the matter? Is it fair? (Obviously no, it is not fair, but then life isn’t fair, so that is a silly question…) Should they have a say, a choice?
These are notions that currently concern me. I wonder if anyone else has been pondering them…If the honeybees and bats and dying whales and dolphins deserve our attention, as most surely surely they do, the highest priority, I would hope that somewhere down the pecking order we with schizophrenia might deserve someone taking a good hard look at just what the suppression of dopamine might be doing to us in the larger picture as well as the smalller one. Just as schizophrenia, I am convinced , does NOT condemn one to obestiy, but the drugs do, just so I believe that the drugs do a number on us the full nature of which we have no inkling of.
Note: this is NOT to encourage anyone to stop taking their medication. Obviously I still take mine, fearing psychosis and the return of the voices far more than I want some dopamine at this point. But I ‘d like some input in the matter, too, and wish they’d develop some better drug or treatment protocol than the present one. Surely I can still be human even with schizophrenia. What with Inderal and the antipsychotics etc I feel more like an automaton, or Mr Spock or Data.
This is the one slide that didn’t make it into the mini artshow, even though I had meant it to. So here she is, about twelve inches tall or so, and of mixed ethnicity, given her lovely dark skin and incongruous Roman nose! But mixed heritages are in these days so I guess I can be forgiven, being her creator…
Judy Chamberlin was hospitalized for depression in 1966 and then against her will in a state hospital, which she found horrific. That experience spurred her life work as an advocate for psychiatric patients and better treatment, gentler, more dignified treatment in fact. But I should not tell her story, because I only today found her blog, thanks to Bill W. No, you can read it in part at the Boston Globe here
and then follow it in more detail at her blog here:
A WONDERFUL blog is Yin and Yang, Kate K’s blog at http://wanderer62.blogspot.com
Kate writes of her journey from schizophrenia down the road to become the person she is inside, the person she wants to be. This entails describing in her wonderful, meditative prose her efforts to regain her singing and songwriting, her ongoing painting enterprise and her struggles with weight and fitness, voices, and isolation. Along the way, there are forays into spirituality — both buddhist and otherwise, all laced together with Kate’s careful and exquisitely thoughtful reasoning.
As for Christina Bruni’s website with articles, memoir and blog, let her speak for herself, because she says it best: “My goal is to be the Rachael Ray of the recovery movement. Have you ever seen this chatty, gregarious cooking expert and lifestyle show host? One day I watched her on TV while I waited in the doctor’s office. Her infectious good humor cheered me so much that I wanted to tape her shows and replay them at night when I got home from work.
I seek to be a force of good in the world, because the illness destroys, and through my recovery I want to create things of beauty and show people a better way. Quite simply, I couldn’t bear to see someone go through what I did and feel there is no hope, or worse, not get the treatment that works. If I remained silent, I’d be complicit in perpetuating the stigma.”
Overcoming Schizophrenia, which is Ashley’s site, is also tremendous. She is in her 20s, an accomplished writer, and though younger than the rest of us, that is an advantage. She can talk about what it is like to recover from a first episode and the hope that recent diagnosis and rapid treatment now offers.
View Album at Shutterfly
You can see most of what I am exhibiting this weekend at the above site. I have displayed most of it here before, though perhaps not all of it. In any event, it might be nice to see most of it collected in one space. I hope it is not all distorted as this “cover picture” is…
At the moment, I have the Trudy child, Dr Jumoke and Decorated Betsy all sitting in my one room staring at me, not to mention the tortoise standing on its shellside glaring and looking most uncomfortable. The Muu’muu Mama is the only one who seems cheerful, enjoying her new youth with her black hair and big smile.
Ah, this is silly I suppose, but it is gettting crowded in here. Still I enjoy it, all these humans staying the night for the week!
I have been madly completing artwork for the show coming up on the 28th. So far have done three bowls and finished the Sitting Child Trudy…Have two more bowls waiting to be painted…And a goose to make for Ruth. Meanwhile, “The Book” is not yet printed, but it looks like it will be soon…The one poem I hate, Solo for Two, cannot be deleted, so I must settle for it staying in but the other corrections were made. I wish I had not been told that the book needed no editing, which is patently silly, ALL books need editing! But that is what they told me, so I did not look at it again, until it was too late to do much. I should have known better! I ought to have known better, as that is precisely what Diane K, our erstwhile editor told us about Divided Minds, and so opted out of helping us. But nothing could have been further from the truth, and luckily we knew it. She was basically trying to sabotage the book, even Lynnie thought so. ARGH, that is water down the sluices…What is important now is that the corrections I really needed made in WE MAD were in fact made, and the one poem I do not like may in fact appeal to someone. So I will put up with that one poem staying in, and hope it does not mar the entire thing…
That said, here are the new art works, first the three bowls, which take about a day to paint each, more or less, and then Trudy, which took several months of intermittent work.
Trudy is about three feet tall but on her hassock is somewhat taller. I’d say she is about the size of a seven year old? But I dunno, since I haven’t seen a seven year old in a while. 8)
I believe that I have written before about having narcolepsy as well as schizophrenia, and while it is up for grabs whether or not this sleep disorder as well might be caused by Lyme Disease, at this point it seems moot in both cases. I still seem to need the psych meds as well as the narcolepsy meds, so what difference does it make if the Borrelia bacterium originally caused the disorders? It seems that I have them now, so I must go on from there…
Anyhow, ever since college, at about age 22, I have had a terrible time with daytime sleepiness, no matter how much sleep I got at night. I could never stay awake during the day unless I were walking or physically active. Once I stood still, and god forbid if I sat down, I was immediately subject to an overwhelming urge to sleep and it seems to dream, the latter not always coming after the first.
The dreaming before I feel asleep only grew worse as I aged, until in my late thirties and early forties I began to have to ask others whether I dreamed something or if it really happened, because I could not tell the difference. I did have a kind of a touchstone, the very fact that I had to ask the question, seemed to mean that it did not in fact happen, but I never quite trusted that understanding until after I’d gotten the denial. In my late forties, it was happening every day, and in addition I was hallucinating visually, not scary things, but hallucinations like stories that I could discuss with Dr O objectively, but bizarre enough that she was concerned. It wasn’t clear how much of this was REM-sleep intruding into the waking state, a phenomenon of narcolepsy and how much was schizophrenia, especially when the hallucinations spoke to me and told me to harm myself, and I obeyed them.
The reason I relate all the above is that we eventually solved the problem, at least this one, and while I told the tale on my other schizophrenia site I feel it is important to tell it here as well.
I haven’t wanted to muddy the waters before now or get people’s hopes up for a drug that might help one person in a million. But who’s to say what might be helpful or not in other cases of schizophrenia. So here, forthwith, is a fuller story of how I recovered.
In 2004, I did something quite desperate. In response to voices telling me to immolate myself, and on an impulse to put an end to their tormenting me, I set fire to my left leg, with the result that I had third degree burns and skin grafting. I had burned most of my forearms before this, but incrementally, and had burned out cigarettes against my face too, but have never done anything quite so dangerous as this. I realized how close I had come, pouring lighter fluid over me, to setting myself on fire, not to mention the building itself. It could not happen again. So the first step, beyond choosing life over death, was vowing to take every medication I was prescribed as prescribed, without fail, until the doctor’s orders changed.
I made up a contract, after I got out of the hospital, and gave it to my visiting nurse, saying that I would not refuse a single dose of medication ever. And in fact, I did not. That certainly stabilized me to the point where I stayed out of the hospital, though I didn’t feel particularly well. Then, I finally agreed to try a drug Dr O had for a year been urging me to take. Xyrem, a night-time drug for narcolepsy, is meant to regulate sleep in narcolepsy, help the patient attain slow wave sleep, and thereby enable her to be more awake during the day. If I could be awake and alert during the day, the theory went, the spells of waking dreaming would happen less often, I would need fewer stimulants, and the sleep attacks would cease…among other things.
Xyrem is not a drug without a difficult past. Once known as the “date rape drug” it has faced bitter controversy. Hearing were held in congress over whether it had any therapeutic uses. Luckily, testimony by persons with narcolepsy convinced the powers that be not to ban the drug outright. Thanks to their efforts it is still available, under very special circumstances, and with careful supervision, from one central pharmacy in Michigan or Illinois, as an orphan drug, schedule III or IV.
It is however a difficult drug to take, and I admit that no matter how quickly I get it down, I dread it each time. A liquid, just a tiny amount, maybe 6ml, mixed with water or grape juice or non-acidic kool-ade and taken just before bed. It’s bad tasting — actually on the salty side — so you have to dilute it well, but not more than they say. Then, the worst part, you must pour a second dose, put it on your nightside table, set an alarm for 3-4 hours later, wake and take a second dose, no matter how deeply asleep you already were!
When I first started taking it, falling asleep terrified me, because I just tumbled into blackness after twenty minutes, and the plummeting off that cliff into unconsciousness was precisely what had always made me reluctant to sleep at night. I had a hard time falling asleep for weeks, feeling the bed rock beneath me, my body trembling and my ears roar, and all sorts of unnerving bodily sensations that turned out to be more fear than anything else. After about a month, though, I was able to take the drug without trouble, except for the middle of the night awakening, which bedevils me to this day…
I found a website, MyCalls.com where you can set up a schedule of recorded messages that they will play at a certain time at night when they automatically call you to wake you, but I find that I barely hear the phone after a certain number of calls, and when I do, I simply pick it up, press one, to cancel the call, and hang up, then fall asleep again. Even if I don’t manage to do that much, I know the phone will quit ringing eventually, and that the calls will cease after three repeats. I’m lucky if I manage even to hear them at all; if I’m in a really deep Xyrem-doze at the time I’ll simply sleep right through.
The effects of taking Xyrem can be felt within two weeks if you’re lucky, though it takes months for some, and for me it was a miraclous 12 days. My improvements however, had nothing whatsoever to do with narcolepsy, which was the strangest thing. Improvement in that sphere did take months to appear. What improved were the last symptoms of schizophrenia.
The last little but still important symptoms just fell away: I began to look at Dr O and finally knew what she, and certain other people, looked like; I began to gradually, shade by shade beome desensitized to the color red, which had terrorized me for decades; when the evening visiting nurse asked me if had been hearing any voices that day, I could honestly answer, No. I felt little paranoia, had no trouble distinguishing reality from non-reality, and for the first time began to understand why my delusions were delusions and that the voices were only false perceptions inside my head.
Since we hadn’t started or stopped or changed any other drug in a long time, it seemed clear that Xyrem was responsible for this miracle. I really don’t have any idea if it would work for anyone else. Dialysis worked for Carol North, a former schizophrenic turned psychiatrist, who wrote WELCOME SILENCE. Since then, according to her, it has worked for no one else and she does not recommend it. So I might be the ONLY one that Xyrem could help. Nevertheless, a nagging part of me reminds me that psychosis is often described as a waking nightmare, and perhaps this is for a reason. If Xyrem helped this go away, literally, for me, (it is part of narcolepsy), who’s to say what it would do in others with schizophrenia…
Now it is 2009, a couple of years after I wrote most of the above. I would like to add the following: when I get my 8 hours of good Xyrem-mediated rest at night, with the proper proportion of slow wave delta sleep, I feel like a million dollars the following day. That does not, however, keep all my symptoms at bay, nor does it enable me to cope with everything as well as I wish I could…My apartment seems to “fall apart” and it is hard to get it together by myself, so Lynnie pays my friend Jo to help me every two weeks (she is also a professional housekeeper) lest it get completely out of hand. My stamina is still limited, so I have to keep a careful watch on how much I commit myself to each day, and in a sense how far from home I go (lest I can’t get back before I get exhausted).
Exhaustion is my biggest fear…that and sleepiness. I am so afraid that I will end up somewhere, as I have, and suddenly find myself overcome with sleepiness, and have nowhere to fall asleep for a half hour. That feeling is such agony, and indeed can be overpowering. What then? is my worst nightmare…And the outcome has sometimes been negative to the max. I do my best to take my medication both at night and on time during the day to avoid getting sleepy when I can least afford it. ( I’m always sleepy at 11am, and usually sometime between 3-6pm) I have my cell phone set every day at 11am, but too often I ignore it or find myself somewhere too incovenient to stop and take a pill, to my great detriment later when I find myself suddenly drowsy while driving, or feeling a sleep attack coming on while visiting Joe in the hospital…
Nevertheless, Xyrem has been a miracle drug for my schizophrenia (Lyme-induced or not). First of all, the other drug cocktail apparently treated my more florid positive symptoms, but according to my twin, a psychiatrist, the Xyrem treated the negative ones, made me seem normal: all the things I could do truly did knit together. She didn’t know I was on it, but when I appeared at her door after taking it for about a month, she opened the door, took one look at me, stepped back, and said, “Oh. My. God.” Then she rcovered a bit, “You look wonderful, Pammy, normal.” She says I looked her square in the eye, was wearing something colorful for the first time in decades, had curled my hair and was even wearing make-up, (never again!) as if I actually cared how I looked. She couldn’t believe it. She said my walk was almost normal, that I was less awkward in my body. She felt like she had her twin back.
“In India when we meet and part we Often say, ‘Namaste’, which means: I honor the place in you where the entire universe resides; I honor the place in you of love, of light, of truth, of peace. I honor the place within you where if you are in that place in you and I am in that place in me, there is only one of us." ~~Ram Dass~~
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