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Good news! Dr C said my worry about renal disease is likely nothing. Unless the numbers keep trending up and down, ie the numbers going higher keep going up and those going down keep going down significantly, where I am now is not bad. It would only be if the numbers got a great deal worse that kidney disease would be significant, according to what I "heard" in our conversation today. So I'm not going to worry. He did a few more tests and said he would call if anything further needed to be done, but I doubt anything will be. I think all is fine...I think Lynnie was blaming me and worrying me for no good reason and that in fact there had never been any reason for Dr L to notify me as to undue abnormal results in the first place. So all's well that ends well. I'm going back to making my papier mâché and jewelry and not being overly concerned about my health for the time being. Jeeze, what a waste of time. I've got better things to do!
One note I will add though is that Dr C did remark that he didn't believe extended use of ABs were a good idea or ever necessary...throwing me into a tizzy, unbeknownst to him, and of course now Josephine wants me to quit them too (she accompanied me to the appointment). I would do so, were I not afraid that I would become psychotic again and end up in the hospital! I know that Lynnie would say that I should not ever stop them and Dr L too. I suspect Dr O would agree...I think. So who to trust? NO ONE really knows...I myself don't really know! I don't want to continue to take ABs forever! I want to stop them, if I can! I wish Icould, I want to try! But I am terrified of ending up back in the hospital yet again, and of Lynnie's wrath if it fell out that way...I dunno. I just dunno what is the right thing to do, or what is the correct way to go. I don't know if it is really Lyme causing my relapses or just my imagination, the way these other docs must think! I believe it is Lyme, yes, but THEY don't...So who is right?
DAMN! I want off as many drugs as possible, and so I'd love an excuse to stop the ABs and if they are not actually keeping me sane, not actually working to keep me Lyme-free and out of the hospital, why take them? But I think they do in fact do that...If I only knew for certain! Big problem here: I hate to feel like people disapprove of me for taking them...But wait...Why do I care? Why do I care if people disapprove of me, if I am able to stay sane on them? Who cares what they think? Why in fact do I care? They don't care what I think! They don't care if I go crazy, or end up in the hospital or why! They only care that they have an opinion and that I know it...They have no stake in this but to vent their opinion. If I become psychotic and lose three months of my life to some hospital ward, what is it to them? It has no impact. It only ruins my life for three months or more! THEY DO NOT CARE. Why do I care what they think? I should not let their opinion matter to me...It should not play a role in my behavior or in my decision. They are not gods and should not have any power over me more than what I give to them. Why should their opinion be more important to me than my own experience? LISTEN to this, Pam! Hear what you are saying! Pay attention. Someone, anyone, tell me: Should the disapproval of others be the one critical factor that decides whether or not I continue to take the antibiotics? Come, tell me truthfully.
It's late Sunday night and I've got to sleep so I'll probably start writing this then finish it on Monday or Tuesday...But I wanted to start it while I was still up. I am still a bit shaky vis a vis this Herxheimer business...Feel like I am in the midst of a hurricane at the moment, sitting in the dark of my bed/sitting room with the people all around me yelling and screaming and Indians whooping and hollering and all sorts of hallabaloo going on...even though I'm aware that I don't think any of it is actually happening. I feel like there are people sitting right across from me watching me type and staring at me doing it even as I sit here! So I dunno how to figure out any of it...I'm just trying to get out from under one thing without another faling on top of me....(I went to bed. What follows is written the next day, Monday.) What I wanted to explain was that It was Kennedy, Ted Kennedy's brain tumor this past Tuesday, that announcement , that really tipped me over into despair and anguish and started the downward cycle last week. I'm embarrassed to admit this, not wanting to seem a groupie or a celebrity hound or something, but because it was always my feeling that I had been responsible for JFK's assassination ( I was a sixth grader ignorant of the politics but not of the "romance" of Camelot ) that somehow whenever something bad has happened to the more nuclear Kennedy family, my heart crumbles...It happens more and more now, as the years pass, actually. I don't know why. But in any event, the news of Senator Kennedy's illness on Tuesday, coming just when I was leaving for my writing group, was probably a bit too much for me...along with the Herxheimer thing doing whatever it was doing and the two collided and combined to do a number on me.
My poor dear Joe is almost complete paralyzed now. Oh, his face is rather mobile, he can make faces, and lets me know when I've made a mistake in guessing what letter he wants on the alphabet board, but he cannot point to what he wants or even tap a bell most of the time (sometimes he is able to do so, and we can have a phone call of sorts). But he cannot communicate witih the nurses enough to tell them what he needs or let them know when he is in pain, unless they specifically ask him the right question. For instance, the other day, they did ask him if he was in pain, and he "said" yes, but when they said "where" he pointed as best he could to his back. He pointed only to his chest, meaning through his chest to his back. But naturally they could only see what he was pointing to and believed he was having pain in his chest. Few bother or have the time, lord knows, to spend it scanning the alphabet board, line by line, letter by letter to let Joe laboriously spell out the words to say what he wants to say. It is truly awful to know how nearly locked in he is, unless Gary or I or Karen is there to find out what it is he wants (and frankly I dunno how much Karen finds out, because she doesn't do the scanning well and is unable to stand up for very long to do it in any event...)
Karen is angling to get Joe to hire a case worker, a private social worker for some reason, probably because he won't pay her to do the few things that he needs, and she thinks she can wear me down by refusing to help ME, maybe even driving me crazy, and thereby forcing Joe's hand. Meanwhile, all she used to do for pay, has fallen on me, which is not that much, only scary for me because it involves phone calls, and also difficult for me to remember to do, given my memory problems, and time constraints...It would help a lot to have some, well, help, frankly, from SOMEONE...I just dunno who would help! Josephine would, I know, I just never think to ask her to do so. And I ought to call on Joe O, my Joe's cousin more. But I'm afraid that he works so hard and won't want to take on the added burden. He just has no idea how difficult all this is on me. Nor how much is on my plate at the moment, what with Cy and other things I don't want to mention until there is some resolution on them or at least some solid facts I can talk about, rather than fears and worries...
Fears and worries...I feel, yes, like I have to keep them to myself, suffer in silence and not bother anyone. Why? Because as I was always taught: Pam is stoical, Pam does not, must not show or even have any feelings. So I have swallowed them, forced them under, ignored them to the point that I refuse to feel anything I might ordinarily have felt.
But if I did have any feelings? Well, let me pursue this a bit.
First of all, What am I talking about? I speak of a series of blood tests that seem, and I emphasize seem since it is only information gleaned from the internet (and Lynnie's stated concern) that provides the occasion, blood tests that seem to indicate I may have renal disease, stage 3 (not at all mild, that is to say). Why do I say this? Oh, I shouldn't go into the details, except to cite both creatinine and the eGFR which numbers are both respectively higher and lower than they should be, by a significant amount and have been progressively getting higher and lower since at least December of last year. This itself is not good, since it passes the three month mark that the Internet sites I looked at mark as stage 3. Now, be assured, I do not know at all if any of this is absolutely true, and may not know even tomorrow, when I see my PCP, who is also, by happy circumstance a nephrologist . But I hope at least to have some clearer picture of what I am looking at or where we go from here. If not, I fully intend to switch docs immediately, as this one has given me nothing, been no help to me at all otherwise; he does nothing for me but refer me on to specialists, even when I don't want to see a specialist! But now he is the specialist I need, so push has come to shove and we'll see what he is made of...(I should explain that one HUGE problem is that this Dr C is a DO (doctor of osteopathy), not an MD, and there is a conspiracy of DOs in this area against me. I suspect he is in it and is colluding with all the other DOs to get rid of me -- by hook or by crook...This is what I have to fight against, evey time I see him, on top of all the other problems!)
But to get back to the Pam the Stoic theme: So, if I have stage 3 renal disease, what about it? How do I feel, now, worrying? And what am I anticipating I'll feel? Or what am I refusing to feel? Ah, big questions, hard questions...
One feeling that is on the tip of my tongue, so to speak, or forefront of my mind (?) is some anger, alas, anger that NO ONE bothered to tell me earlier to see a doctor...Not even Lynnie, no not even she. I can't understand it. Dr L, who did the blood tests, simply sent them to me, month after month, circling the results but never once told me what they meant or called me to alert me to anything being seriously amiss (which of course may mean that nothing is, in the end...But then, why is Lynnie so concerned?) What kind of doc does such tests monthly, routinely, and sends them to me, then doesn't keep track of the results closely enough to spot a trend and make note of it, and alert the patient to see another doctor? I live an hour and a half from Dr L. I could not easily see him, nor is renal disease his thing. But he should have told me to be seen up here by someone else! He should have been on his toes and noticed as indeed he did! he circled the result but did not tell me what to do or what it meant, so naturally I did nothing, he didn't tell me I should do anything! -- otherwise why bother to serially perform such tests????? As for Lynnie, she did notice the on-going abnormalities, and did worry, but she never told me to see a doctor about them. She got mad at me, BLAMING me for doing whatever I was doing wrong...Yes, she did do that. It was my fault, always, I wasnt drinking enough, or was drinking the wrong things, or wasn't eating enough or the wrong things...NEVER acknowledging that maybe the meds themselves were to blame. NO I was the one at fault ALWAYS...but never did she tell me simply to go to a doctor about it. Even tomorrow's appointment was made because I wanted to see Dr C about my osteoporosis, not possible renal disease...So, that's how I feel, or part of it, ANGRY...Angry...P.O'd...upset...worried...what's done is done and who knew and would anything have changed anything?...I feel, well, how do I feel? I feel more in limbo than anything. Invulnerable, not really scared. I don't believe anything could be wrong, or is wrong. I feel fine. Why should I worry? They are only numbers. Numbers can lie! Wouldn't I have symptoms? (Need to look them up...)
So I'm either the stoic, still, or I really cannot borrow trouble in advance of trouble's descending. I just don't feel like worrying. What is there to worry about? Dying? Feh! If I am going to die in, what? how many years? I don't think it would be all that soon, FINE, I do not want to live in the chaos and rioting and social instability of a globally warming world, esp one running seriously out of oil or once the seas begin to rise...So give me two, three , five years? I don't care -- that would be enough, as far as I'm concerned...I might want more, if social stability continued, but I could "live with" ie die with less.
Eek, I'm being awfully morbid. No one is saying I'm dying yet!!!! BD No one is even saying I have kidney disease! I've just indulged an urge to google a medical test I didn't understand and I may have completely misconstrued the explanation! If so, I deserve the worries and panic, such as they may be, that followed.
Readers, do not weep for me just yet. Let us wait and see what Dr C says tomorrow, okay? I suspect all is perfectly fine, and that I am in ideal health and tiptop shape, not a thing wrong from stem to stern. Okay? I just did want to allow myself the chance to say what I needed to say, without holding back for once, just for once. I will not do it again. It is simply too melodramatic for my taste and too over the top and risky in terms of others feelings, in case I am wrong...
Remember: I know nothing for sure, except that I know nothing for sure.
This is the corkscrew-like bacterium or spirochaete of Lyme Disease. The other famous spirochaete disease is syphilis, which is often itself treated with long term-antibiotics, a good model for Lyme treatment. My personal question concerns the corkscrew morphology: does it somehow aid the bacterium in penetrating the tissue more easily? Is it significant in terms of function? Would the spirochete form indicate anything special about its particular habit or "tastes" so to speak. I wonder...
This is the tick that carries the Lyme bacteria. You should ALWAYS wear long pants and socks, and use bug repellant when walking in tall grass or in the woods. I know, bug repellants might not be "good" for you, but I assure you that the risk they confer is a great deal less than the risk of getting Lyme disease, arthritic or neurological. So go outside and have fun, just take certain precautions because Lyme is everywhere...
I'm slowly recovering from a "bout" with demons...All week long, well, ever since Tuesday night's writing group actually, where I became suddenly distracted by numbers and letters from random sources -- license plates, book spines, letters popping off the pages of writing in seemingly significant combinations...All week long I have been in a state of increasing distress, culminating yesterday, during a migraine with a call to Dr L, my infectious disease doc. The spur to call him was 1) an extremely exaggerated startle reaction when the morning nurse Lisa, knocked on the door -- I screamed and jumped, though I'd known she was coming! 2) I was thinking I didn't want to live any longer, that it might be better, the world might be better off if I were dead 3) the sudden nagging remembering that -- wait a minute, I have been here before, haven't I...? And what came of it? Oh, yeah, it turned out to be, what? Lyme disease!
So, I called Dr L, first to ask for my bloodwork to be faxed to me -- it seems I have kidney malfunction that needs to be looked into. And then asked to speak to his answering machine. I told it that I thought the antibiotics were not working despite the increase, that my symptoms were worse than ever, that I didn't know what to do...
Well, forgive me if I crib an entry I posted over at the Schizophrenia Connection but here's what I offered over there:
I've written elsewhere that my worst "break" -- my Y2K meltdown -- coincided with, was actually caused by I believe, a case of neuro-Lyme disease. Not only do I believe this, but so does my twin sister, one psychiatrist in my life as well as the "famous Dr O," the other psychiatrist in my life. (I should mention that there is also my brother, Chip, who is yet a third psychiatrist and there are others beyond those, but you get my point...). The reason we could link the two, the infection and the psychosis, was that I had an MRI during the psychosis, and an MRI nine months later and it turned out there was a noticeable difference between them. The later one showed multiple patches of scar tissue where none was seen in the MRI nine months earlier. This would indicate that something had been going on in January 2000 that, being fresh, might not show up in a scan but having consolidated into scar tissue nine months later finally did. Furthermore, according to my infectious disease doc, the pattern this scar tissue took, these patches, is often seen in Lyme disease in the brain (neuroborreliosis).
In addition, I thrice tested positive for the bacterial DNA in my blood and urine. This is really the gold standard for a positive test in this disease. Sometimes getting a positive blood test is often impossible, even when a person is floridly ill. According to what I've read, this is because the Lyme bacteria, the spirochaetes, do not "like" the blood but prefer to lodge in tissue, the muscle or fat of the body, and therefore they are not easily found during a routine blood draw. Hence the difficulty obtaining a positive test for infection, even when you are riddled with them! So when they were able to find, if not the bacterium itself, at least its DNA in my blood, we had undeniable evidence of its presence in my body.
I go to all that trouble of proving I had/have Lyme disease in my brain for a good reason: there is a huge controversy, largely concocted and for political reasons I will not go into, surrounding whether chronic Lyme disease exists or not. Some, the so-called Yale school ie the "establishment" asserts that no such thing can possibly be, yadayadayada and so they set up guidelines for treatment that virtually, no, absolutely ignored the possibility of a chronic form of the infection...In fact they gave no consideration to the question even when setting up the guidelines, did not even look into the research suggesting it might in fact exist. The other school, that is, everyone else, believes the opposite, that either a chronic form does exist, having seen it, or that something else is going on in Lyme, that 3 weeks of antibiotics does not in fact seem to cure it once and for all at all. If you do not believe that this is so, take a look at the charges of Richard Blumenthal Attorney General of CT, who is forcing the Infectious Diseases Society of America, through anti-trust law, to reassess and if necessary rewrite the guidelines, this time taking the chronic Lyme disease research and researchers into account.
Argh, this is so important to us Lyme sufferers, but I think I am digressing a bit from my point...My point? That this week I suffered a relapse of my psychotic symptoms, from which I am only slowly recovering. I still hear some voices -- a woman crying, some singing, hauntingly, with a message for me, other things -- and I feel very weak and sad and even suicidal. Yesterday I wanted to die, plainly speaking. What kept me going was holding on for dear life to the one hint I had that I thought just might be true: that it was Lyme that had put me in this place and state. I knew people were threatening me with the hospital, and that I was suicidal and non-functional. I knew I'd been that way before...And I knew this time, or thought I knew, suspected I knew, what the problem had to be. Dr L, my infectious disease doc had already suggested it when I called him that afternoon, worried that I had Lyme symptoms again.
"No, I think you are herxing from our increase of the antibiotics last week. We went up too fast and you are having symptoms from it," he told me.
Yes, that could explain it. It made sense. A Herxheimer reaction is one that happens in Lyme. It could happen in any bacterial infection but notably in Lyme where when you start ABs or increase them you have a temporary increase of symptoms suddenly once the bugs in you start to die, or so they think. Whatever the cause of the reaction, if your symptoms are physical, as in Lyme arthritis, you have an increase of aches and pain and such, but if your symptoms are essentially psychotic, whoa! So I think that is what's going on, I am reacting -- to be expected, but unexpected by me -- to the sudden upping of my ABs. And the weird thing is, we were upping my ABs to treat break-through Lyme symptoms that were worrying me to begin with!
So for today I am AB-free, and slowly feeling better, but tomorrow I have to start them up again, at the lower dose. I will up them much more slowly. I do want to go to the higher dose, as I do not like having this breakthrough symptom of exaggerated startling...I feel like the infection is just too close to the surface to be really safe. But I cannot afford even a temporary breakdown, certainly not if it produces such extreme symptoms!
You see why I entitled my entry as I did? It never ceases to amaze me how the little critters in my blood can change my emotions and thinking so completely. I will no longer go along with anyone who tries to tell me that there is a psychological component to schizophrenia: I have done and felt and thought too much and too many different things under the influence of 1) bacteria 2) medications 3) without either to not believe that it is ALL biochemistry in the end.
That does not make us less human, by the way, it simply means that we are less "guilty" than we believe we are for our various everyday foibles and follies. Knowing that, we really ought to forgive not only ourselves but each other a lot more than we do...
I figure some of you might want to know what I look like. So here I am, in my favorite tee shirt and the one necklace -- remade since this photo using graduated real turquoise beads and sterling silver - I won't sell. This is the photo that I believe will be used for publicity for my book of poems.
I know, I know! I'm cheating with the date. But I'm in charge of this blog and I can do ANYthing here. That includes going into the future and writing my entries in advance. So there!
This is a paper mâché lampshade I recently made. I imagine there is not much else I need to say about it! BD
Warning: If you happen to belong to my Sun Writing Group, do not continue on to the writing below as this will be offered as my contribution to our group this coming Tuesday. Naturally I prefer that you not read it in advance...To all you others, some words of explanation.
First of all, I usually write a poem in response to our writing prompts, meaning the one or two words we choose to stimulate an essay or story or poem -- in one page, no more -- that each of us composes for the next month's meeting. May's prompt was "money" and I struggled with it for weeks, failing to find anything I could write a poem about. Finally, finding the following quote, I gave up and wrote prose: "There is no money in poetry and no poetry in money." Now, this is not strictly true. For one thing, Joyce Carol Oates, a prodigiously prolific writer, wrote a whole book of poems called "Women Whose Lives are Food, Men Whose Lives are Money." But I cannot/could not get through those poems and so never did reach the title poem to know if it was good or bad...Some other poets have written poems about money or with money mentioned. I know. I myself have written such a poem.
It was a frying pan summer.
I was playing croquet by myself,
missing the wickets on purpose,
rummaging my pockets for dime-sized diversions.
It was a summer of solitaire.
I laid the cards out like soldiers.
I was in command.
Then you came out
with a mallet and a stolen voice
that seemed to rise disembodied
from the gorge of your black throat
and you challenged me to a game.
You ate me with your mosquito demands
though I, I didn’t want to play with anyone!
I hid my trembling in my sleeves
refusing to shake your hand.
I thought: this is how the Black Death was
transmitted, palm to palm, hand to hand,
a contagion like money.
You smiled the glassy grimace
practiced for boys all summer in front of a mirror.
If I looked you in the eye I would die.
I knew then all the sharp vowels of fear.
It was late in the afternoon
and I was frightened
when our shadows merged.
But just because this poem uses the word "money" doesn't mean it is about money...and I think it misses the spirit of the assignment. Besides, it is twenty years old and not a new poem, not one written for the occasion by any means. And so, I wrote prose, as I said. The following incident did happen, and as Josephine said, laughing, "Exactly like you wrote it!" Well, maybe, maybe not. But I wrote it as memory recounted it to me, and that was the best I could do.
“Gas is $3.99 a gallon at the Mobil station!” Josephine exclaims first thing on Friday morning when I slide into her car at 11:30. She has picked me up on her way to a cleaning job. She’ll drop me off first at the Hospital for Special Care so I can visit my friend Joe, who has Lou Gehrig’s disease and is on a ventilator.
“Now, at DP’s in Rocky Hill it was only $3.91 but as soon as I crossed the town line it went up two cents. And at your station” – why the guilt or innocence of the town line Mobil has fallen upon me I cannot guess – “it is six cents higher than anywhere else!” She is shouting now but she always shouts so I am used to it. Still, I’m sorry, I can’t help myself and I point out that with a ten gallon tank this comes to all of 60¢ per fill-up. When that costs $40, isn’t 60¢ rather trifling? She falls silent, digesting this.
Still, I can see her point. Pump prices are jumping five cents almost every day, so that 60¢ adds to the 60¢ before it until a fill-up has risen ten dollars since last summer. No one can say precisely why. Is it merely supply and demand? Is it speculation? Or something more sinister? Suddenly Jo changes gears.
“So how’s my pal Joey?” I share the fact that he is now barely able to communicate except by a head nod or eye blink indicating yes or no. Joe pays her to drive me back and forth to the hospital. This is only fair as it takes a good twenty-dollar hour out of her working day and costs her in gas and wear and tear on her car. But in truth, Josephine would get me there by crook or hook, somehow, even if she were not paid. Money simply makes it easier for her, and therefore for me.
On the way home, the gas tank is nearing empty. Josephine has not found a gas station with prices low enough to suit her. She had been certain that in a working class town like New Britain gas would cost less than in highly taxed Wethersfield. But no, to our amazement, we see $4.01 everywhere and in some places $4.05. Josephine shrieks in disgust, “Those gougers!”
“Jo, we’ve got to stop somewhere. The gauge reads empty. Stop at the next place, no matter what the price. I’ll pay the difference between DP’s and here.”
“No way.” She is determined never to take my money, certain I can’t afford to spend a penny on anyone but myself. I’ve pointed out to her that even the impoverished widow wants to share her mite. She doesn’t listen. Nevertheless, we do stop at the next Citgo, gas $3.99, and she fills up to the tune of $43.20, somehow her ten gallon tank sucking down more than it can hold.
If you have never heard of BPD it stands for Borderline Personality Disorder and I will quote the psychiatrist's Bible, the DSM IV to explain what it is:
A pervasive pattern of instability of interpersonal relationships, self-image, and affects, and marked impulsivity beginning by early adulthood and present in a variety of contexts, as indicated by five (or more) of the following:
1. Frantic efforts to avoid real or imagined abandonment. Note: Do not include suicidal or self-mutilating behavior covered in (5).
2. A pattern of unstable and intense interpersonal relationships characterized by alternating between extremes of idealization and devaluation. This is called "splitting."
3. Identity disturbance: markedly and persistently unstable self-image or sense of self.
4. Impulsivity in at least two areas that are potentially self-damaging (e.g., spending, sex, substance abuse, reckless driving, binge eating). Note: Do not include suicidal or self-mutilating behavior covered in (5).
5. Recurrent suicidal behavior, gestures, or threats, or self-mutilating behavior.
6. Affective instability due to a marked reactivity of mood (e.g., intense episodic dysphoria, irritability, or anxiety usually lasting a few hours and only rarely more than a few days).
7. Chronic feelings of emptiness.
8. Inappropriate, intense anger or difficulty controlling anger (e.g., frequent displays of temper, constant anger, recurrent physical fights).
9. Transient, stress-related paranoid ideation or severe dissociative symptoms.
Now, in Dr O's hospital I fairly recently (about two years ago -- which is recently compared to how long I have been going there) discovered upon reading a discharge note that my official diagnosis, in the hospital at least, had been paranoid schizophrenia, bipolar mixed state (or something like that) and "borderline traits". That last threw me for a loop. What did that mean? And who wrote it? Did Dr O think I had BPD or did the hospital?
This was not an unfamiliar accusation: in St R's and at the university hospital, Lynnie had been told that I "had BPD", a diagnosis she flatly and decisively denied. In fact, when she told them that I was not my usual self, that I was not "like this" at home or when well, that ordinarily I did not have a temper, was known never to yell or scream or be aggressive -- when she told them this, they then decided that I had "acute BPD."
You have to understand that a personality disorder is essentially something you are born with, that may seem to manifest itself in adulthood, but which really begins in childhood, and which continues throughout one's life. As I understand it, being part of one's personality, these disorders are very hard to treat or change and usually it is a matter of learning to deal with them, adapt to them and work with them, rather than actually reverse them.
So to diagnose an "acute" personality disorder is a contradiction in terms and well-nigh ridiculous. It most certainly is torturing a concept that is not appropriate into fitting the person around whose neck you wish to hang it. Acute BPD, if it existed, could be used to diagnose anyone who had a temper tantrum or made a suicide attempt, because those are acute behaviors and apparently anything done once would be fair game. But all that aside, here they were telling Lynnie that while in my normal life I fit none of the categories, except perhaps self-mutilation (and that most likely for reasons that were different than in BPD) , while I was ordinarily even tempered, appropriate, emotionally rather stable and not particularly impulsive, in the hospital I developed an acute case of BPD. And this was so marked that it had to be diagnosed as part of my illness.
She demurred and continued to say they were absurd and wrong throughout. Doubtless she would say the same to Dr O and her hospital. But when I read the discharge summary at Dr O's hospital, this time I myself was incensed. Why? Well, I'll tell you why. Because 1) only women "have" BPD, only women are so dismissed and discarded into such a wastebasket diagnosis; men are taken seriously; they might be called "anti-social" or aggressive, but they would not be dismissed 2) BPD is a diagnosis given to women who cause too much trouble, who are loud or who bother people or who ask for too much or otherwise make themselves a pain in the ass, in other words, it is a diagnosis given to someone a doctor doesn't like very much (this was most certainly true in the past at any rate) 3) it meant they were imputing certain standard interpretations to my behavior that were simply wrong, and I had no way of explaining or clarifying...moreover, they had done so without ever asking me to tell them why I did what I did.
I was particularly incensed when Dr O admitted that she had written the Borderline traits part of the Dx. What did she mean by that? I asked, not a little angry.
"Well, you do have some borderline traits."
"I do? Name them. I defy you to name them."
She looked at the list I'd copied from the DSM IV. "You fear abandonment."
"I fear abandonment. What does that mean? By whom do I fear abandonment? And the symptom is "frantic efforts to avoid real or imagined abandonment" not merely fearing it. Who wouldn't fear abandonment? If your husband were going to abandon you, wouldn't you fear it? That's nonsense. I don't "fear abandonment" anymore than anyone else! Go ahead, name some other trait that characterizes me, that fits me now, when I am out of the hospital, since you say I have these borderline traits as part of my personality."
"Okay, for the sake of argument, I'll grant you that. I won't even argue what I think does matter, which is the question of why I do what I do. Touché. You get that one. But you wrote "traits" so name me more."
She looked at the list and then put it down. "It's only traits, Pam. I didn't say you had the entire personality. But you do have some of the traits. And frankly I had to write something. It affected your treatment."
I never did find out what she meant by that. I assume that she meant that the staff insisted I had BPD. I can see why they would, because they had no way of knowing, without trusting what Lynnie told them and why should they do that? that I did not usually have temper tantrums or suicide attempts or scream and yell and throw things etc. To them I seemed extremely volatile and on an emotional rollercoaster all the time. Some people were the good ones and others were the bad ones, and never the twain should meet, so I seemed to say. All these things would fit the BPD Dx. So I can see their point. Except that they did not listen to Lynnie tell them that this was NOT me, I was not like this when out of the hospital. All they wanted to believe, or know, was what they saw in front of their faces. So in fact, they did not want to know the truth about me, only the me that appeared on their unit, ill and disheveled and screaming more often than not.
What makes all this so sad and so angering to me is that I did not know 1) that they were diagnosing me this way 2) WHY I was like this when ill, only that I felt out of control 3) that every time I ended up in the hospital at least after Y2K was because I had Lyme disease and the antibiotics were not working or I was not on them at the time.
Even this last time, when was it, in Oct and Nov of last year at "Brook Hill". There I came to realize that it was Lyme that had caused my symptoms, Lyme that had exacerbated my psychosis and put me in the hospital, Lyme that was causing my rages and sudden "suicidal urges." I knew this because Lyme also caused acute dyslexia and a weird sort of extreme startling that made my hands fly up to my chest and made me shriek when someone knocked softly on my door. As soon as I experienced those two symptoms, I recognized the problem and knew to ask for antibiotics...and I also understood where the other behavior and uncontrollable emotions were coming from. But did the staff there believe me, or help me or understand? No. Most likely they too decided that I had BPD, that Lyme was merely incidental or a coexisting condition but not the actual cause of my so-called personality disorder.
This whole business really infuriates me. It should not be so. I realize that hospital staff can't be expected to immediately recognize Lyme as causing someone's strange BPD symptoms. But I think they should listen when a close relative tells them No she is not like this at all. This is not she and you should find out why she is behaving this way...I think they should listen when a patient explains that an infectious disease causes and has always caused these particular neurological symptoms, which cause certain behaviors due to the neurological changes. I believe hospital staff owe it to the patients to LISTEN, not to judge and throw people away just because an illness makes them difficult or even, as I have been called too many times, impossible.
This is the point that Debbie Finn made in her wonderful paper in the Yale Journal Of Humanities in Medicine, I think. That just as schizophrenia will eventually be found to be fundamentally a "medical" illness, whether of infectious or genetic or some other origin (the way the syphilitic insane were found to be, well, sufferers of an STD), so too will other so-called mental illnesses fall before the power of better diagnostic instruments. If Lyme caused both my psychotic and my supposed BPD symptoms after Y2K, who is to say that it doesn't cause them in others, at least in some people? Acutely at least. And if Lyme can cause acute BPD, or borderline traits maybe it could be a model for the real cause of BPD, such that BPD could be taken out of the MI category and might be treated as a true illness with a cause and a cure. No more dissing women or dismissing the difficult.
The following is for those of you who have not yet seen or heard us speak or read my speech as posted elsewhere on the blog. Even so, if you have read the original speech written in 2005-6 and recognize some familiar parts, you will see if you proceed that there is also much that is new. I promise to tell you all about the gala event either later or tomorrow, but for now, I thought I'd post just the speech.
I am a poet. Metaphor means more to me than money. Similes make me smile. But sometimes mental illness, for which there is no adequate metaphor, defeats me.
Having schizophrenia in this world is like living, along with three million other people, in a desolate, dark little room with a large padlock on the door.
The room is stigma, the darkness is fear and the lock is ignorance.
I’d like to speak to you today, having been ill for more than thirty-five years, about fear, ignorance and stigma, tell you some reasons why medication compliance is such a difficult issue in schizophrenia and a little about how I began to recover.
Medication. Why on earth would I take medication? Medication meant I was sick. I feared being labeled crazy, I feared the very idea of that label. But what I feared most were the side effects...Never mind what medication did FOR me, I hated what it did TO me. And it did it to me for many many years.
What was so terrible? For starters there was dullness, deadness, lack of motivation, dry mouth, stiffness, shaking, agonizing restlessness, movement disorders....And that was just with the old drugs. Then came the so-called atypical drugs and feelings of impending doom, an inability to swallow my own saliva, overwhelming sedation, a sixty-to-seventy pound weight gain. Is it any wonder that time after time, I stopped taking them?
You know what happened, right? I went crazy again, I mean, psychotic...You are supposed to say, "psychotic" even though I really went crazy. People with schizophrenia are faced with this all the time. Either they refuse meds and stay psychotic or they can suffer side effects that may feel horrendous. Side effects have to be reckoned with or compliance will be zilch, even with meds that obviously help.
The right medications can help, though. My doctor worked patiently with me for five years and through innumerable hospitalizations to finally find a 6- drug combination that works without side effects. It made the difference between chronic illness and recovery. I admit I wouldn’t be standing here to day without them.
But “medication compliance” may be iffy for other reasons as well. Some take medication when they’re scared and psychotic, then stop it once they feel better, only to get sick again. This sets up a destructive cycle into which many have little insight. Other people with schizophrenia don’t believe their difficulties constitute an illness. If the CIA and FBI control me through a microchip implanted in my tooth, how will any pill solve that?
If I hear invisible voices that sound real, and think bizarre thoughts that feel true, how indeed is medication even relevant? The solution is to get rid of the radio in the wall or go to the Middle East, find 22 linguists, and translate Gray Crinkled Paper.
I asked my dentist about my tooth. For a moment, he looked taken aback, but he regained his composure and answered with something like, “I understand you believe there’s a microchip in your tooth. I don’t think that’s possible. I think it’s a symptom of your illness. But I’ll take a look if it will make you feel better.” The technician, on the other hand, passed over the tray of probes then backed a safe distance away. Stigma.
Did you know that stigma originally meant the brand from a hot iron that they’d burn into a wrongdoer’s face as a mark of shame? That’s why many young people won’t take medication. Because it sets them off from their peers. It brands them as different. But all of us with schizophrenia are stigmatized when people mock “mental patients” or “schizos” or imply that we’re axe-murderers just waiting to happen.
Ignorance plays a big role in stigma. Exactly one hundred years ago, Clifford Beers wrote of being locked in hospital rooms and treated with such cruelty he considered it torture. Because of this experience, he went on to start the mental health movement. Much has changed, but much remains to be done.
Beers was wrestled into strait-jackets. I’ve been kept, sometimes for days, in four-point restraints. Do you know what it’s like to be grabbed by a goon squad of who knows how many people, slammed onto a bed and forcibly shackled to it, hand and foot, at times even your chest restrained so that you can barely breathe? If that sounds awful, it is. It is.
Beers later wrote: “In every institution where the discredited principles of ‘Restraint’ are used or tolerated the very atmosphere is brutalizing...[In such places] the gentler or more humane methods of persuasion will naturally be forgotten or deliberately abandoned.”
I suspect in fact that it’s mostly ignorance of better ways to handle things rather than a shortage of staff that has many hospitals still using restraints in this day and age. The gentler modes of persuasion, as Beers suggested, have indeed been forgotten.
The effect of ignorance is also the stigma that keeps us locked away where no one has to see or acknowledge us. Out of sight being out of mind means we can be secluded or restrained. Mayors can clean city streets of us and put us away in shelters, supposedly for our own good. We can be arrested for minor infractions and the crime rate lowered. But someone needs to stand up and ask where we’ve gone. Have we been sheltered or imprisoned, have we been helped or just hidden?
In September 2004, voices compelled me to pour lighter fluid over my left leg and set it on fire. I had 3rd degree burns, skin grafts, the whole terrible shebang. February 2005 back in the bin. I’d spent a total of 8 to 10 years in the hospital by then. This time voices were ordering me to immolate myself, a whole body sacrifice to atone for countless sins.
That was it. I’d been tied down, locked in, shot up and kept inside too much to take it easily again. I had to decide: live or die.
One evening, Lynnie visited. She was tired of it all too. She said, “Listen, this is what I tell my patients: You can always go down the old familiar road. You’ve taken it a million times. Why don’t you try something new for a change?” She called this ‘bushwhacking,’ and it had nothing to do with George W. Bush. I could always switch back to my old way. It was always there. But bushwhacking a brand new path for myself might bring me somewhere I liked better.
It’s still a mystery to me why this took. Maybe I just had to be ready to hear it. I decided I would try her advice. What did I have to lose? My newly bushwhacked path was to follow my doctor’s orders and take every one of the medications prescribed me, as prescribed, without skipping a single dose. For a while at least, see where that got me.
This is where it got me.
You know, a lot of ordinary living passed me by in 35 years. I never dated. I didn’t marry. I haven’t held a paying job since early adulthood. But since 2005, when our book was published, I have learned a lot I did not know about how to live in the world. I have gained friends and lost one I loved. I have learned to drive again. I have become an artist. Recently I had a second book, poetry this time, accepted for publication next March.
What comes next is something no one can say. But for the time being alive and well, I look forward to all of it
Life is for living. Today is all we have and all we know. Enjoy what you enjoy; when you suffer, suffer well. Remember – and this is for anyone who has ever taken piano lessons: it’s all in the wrist.
Those are not bad lessons, and you can learn them from the same people once kept locked away in that dank little room. We have so much to teach you.
That’s what I mean, you see. Don’t leave us in the dark: amazing things can happen when the doors open and the walls come down.
This is one of my newest art projects. The bowl is papier mâché which has been gilded inside with composition gold leaf and painted outside then polyurethaned inside and out for durability. The pictures are really of slime molds, but in false colors.
I've been having a blast making various things out of papier mâché recently. Along with the tortoise and the Decorated Betsy, which you all have seen pictures of, I have made bowls and a bust and am making a "monster" and a lamp and jewelry -- all out of paper and glue and wall paper paste, and/or some variation thereof. I should be writing more but art keeps taking precedence, partly because it is so hard to see to read or write, even if partly beause I so enjoy it. I'd enjoy writing too, if I could see better, but my vision is so wonky -- double and more, that my eyes tire out easily even when they are able to see for a while.
Speaking of which, my friend and optometrist, L, solved the vision problem finally. Not even my ophthalmologist managed to do what she did, though he didn't even bother to look for a solution, just threw up his hands and tossed me out of the office as a complainer...But she took me seriously, didn't treat me as just a "mental patient" and lo and behold found the problem in no time: one eye goes outward while the other goes in the other direction downward. With the expected result: double vision and lack of depth perception.
I had no idea that I was lacking that last. I knew I had to brake the car carefully when approaching another car from behind...but I didn't understand my caution, only that things looked different and I had to be careful. I hadn't been able to define what the problem was until she stated it. Ah, so that is what it is! I see now, I see!
L said the only thing for it was prism glasses and she fitted me for some. We will go to choose some at her office in a week, when I have a ride out there (i saw her at a local office she was temporarily working at, not her own, several miles further away).
I can't wait to see if they really do help, and if reading and writing seem less of a burden once I can see better. It will be a blessing if so, and I am hopeful.
I would write more now, but I need 1) to get a cup of coffee to wake up (though it is evening, I will be taking my Xyrem in a few hours and it will not keep me up past a half hour after that, no matter what I do now) 2) to rest my eyes and take a break.
Tomorrow we have our speech at the CT MHA. I will write then to let you know how it went. And to tell you more about what I've learned about Clifford Beers, author of the very interesting 100 year old "A Mind that Found itself." Truly a classic of mental illness literature and well worth reading, even if he was bipolar not schizophrenic. I highly recommended it, though I would warn you about the archaic-sounding style...Remember it is 100 years ago when he was writing, and they spoke differently back then, had a different style of writing.