Tag Archives: Schizophrenia

Health Care Reform, Lyme Disease, Mental Health, Prisons, Psychiatry, Schizophrenia, Uncategorized, Violence

The Mentally Ill in Prison and Out-patient Commitment Laws

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Dear Pam,

Thank you for the link to the Dr. Manny Show. There are indeed many faces of mental illness. Some people have mild cases and are able to work and function at the same level as anyone else.

Congress passed mental health legislation in 2008 providing for workers who have psychiatric dysfunctions to be covered under their employers’ health insurance at the same rate as employees with physical illness (certain exclusions apply). That was a positive step. However, acute mental patients do not benefit by that law, because severe mental illness is often too debilitating for victims to work, especially without the psychiatric treatment they need. In fact, people with acute schizophrenia, bipolar disorder, PTSD, and other conditions frequently resist treatment even when it is available to them.

Unfortunately, 1.25 million mentally ill Americans are currently imprisoned for offenses ranging from simple vandalism or disturbing the peace to murders. Last January, Rep. Eddie Johnson (D-TX 30) introduced H.R. 619, a congressional bill to resume Medicaid coverage for inpatient psychiatric care for patients in crisis and for people who require long-term containment in a secure treatment environment (such as patients who have done violence).

H.R. 619 is an important bill that deserves our support. It was largely the removal of Medicaid funding several decades ago that led to criminalizing mental illness. That in turn led to many other problems, such as overcrowded prisons and a burdensome prison budget. Hundreds of thousands of acute patients were “de-institutionalized” in the 60’s and 70’s only to become homeless and/or prisoners. Thousands of acute mental patients continue to be dismissed from mental hospitals and prisons without subsistence assistance and provisions for continuous monitoring and treatment under programs like Kendra’s Law.

Assisted Outpatient Programs like Kendra’s Law have been proved to reduce homelessness, arrests, hospitalizations, and incarcerations by up to 85% (among New York participants, compared to their circumstances three years before becoming program participants). The impressive rate of reduced arrests and incarcerations also indicates that community safety was improved significantly as less crime was done, and it also follows that the prison budget was lessened by helping patients with living arrangements and mandating continuous psychiatric care for ex-offenders and former inpatients who often lack the wherewithal to make wise treatment choices and avoid psychiatric crises.

Assistance to the Incarcerated Mentally Ill (AIMI) supports Rep. Johnson’s bill, H.R. 619, as well as NAMI, Treatment Advocacy Center, and many other mental health advocates who believe resuming funding for inpatient treatment is best for patients and for America. In fact, 100% of police officers I polled agree that prison is not the place for severe mental patients, where they comprise 60% of the inmates kept naked in solitary confinement cells.

I solute Congresswoman Johnson, a former psychiatric nurse, for introducing H.R. 619, and I hope everyone who is concerned about human and civil rights will support the bill and end the discriminatory practice of punishing Americans for being sick. I pray for another bill to be introduced to address the second cause of mental illness having been criminalized in America – the lack of continuous care and subsistence assistance for released prisoners and former inpatients. Kendra’s Law should be applied nationwide so that acute mental patients will be treated, not punished, for having a common, treatable health condition that requires monitoring and care just as diabetics and heart patients receive.

Inpatient hospitalization was not included under the national health care plan, so it is very important to pass H.R.619 as a separate bill. Please write an email to your representatives tomorrow and ask them to co-sponsor the resumption of Medicaid for psychiatric hospitalization and to institute Assisted Outpatient Treatment progams, which would not only be more fair and humane to sick people and their families, but would also save taxpayers billions each year as our prison rolls decrease.

Thank you, Pam, for this forum and for the useful information that WagBlog always has. I will share the link to the Dr. Manny Show with many people at my Care2 Sharebook and at FreeSpeakBlog, where we often publish mental health news as well as other matters that have to do with promoting human rights for prisoners.

Mary Neal
Assistance to the Incarcerated Mentally Ill
http://www.Care2.com/c2c/group/AIMI

PS Please VOTE for H.R.619 to replace prisons w/ hospitals for acute mental patients. The link below will take you to OpenCongress.org where you can use your voice to say to our elected officials, “We care about the least of these, His brethren: naked, sick prisoners.” (Matt.25:36) http://www.opencongress.org/bill/111-h619/show

While many Americans celebrate the health care reform bill’s victory, please agree that millions of citizens should not be left imprisoned or live under the threat of prison because their health care needs were omitted. Put the “NATIONAL” into health care reform by supporting H.R.619: Medicaid funding for psychiatric hospitals instead of prison cells for mentally challenged people – a change that will save money and restore lives!

Thanks in advance for voting. Please invite others!

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Dear Mary

I think you know that I was quite ill until starting in 1996 when Zyprexa came out, but not truly until 2005,  when a complete transformation occurred. However, when I relapse, I “relapse good” — as my medical record from the October hospitalization attests, with nearly constant locked seclusion or restraints for 6-8 days etc. Nevertheless, I am with you, though reluctantly, as I also know how terrible the side effects are of some of the older medications are as well as the newer ones, and the horrible state of affairs when a harried or burned out psychiatrist simply rams them down your throat without consultation at least after the acute psychosis resolves and you are able to discuss such things.

When I was in Manchester Hospital, I begged to be put back on my anti-convulsants and the Abilify/Geodon combination that had served me well for many months, believing, with reason, that I was suffering from a flare-up of my neurological Lyme disease, an illness that had always and invariably produced severe psychiatric symptoms. I needed, I knew, an increase of those drugs rather than a wholesale change to the “old drug” Trilafon. But did the doctor listen to me? No, he did not, despite my  ability to say as much to him, my psychosis consisting not of incoherence but of paranoia and command hallucinations to  harm myself in order to atone for being the Devil…I could and did argue with him, vehemently, and steadfastly, refusing to take the Trilafon, until he instituted a standing restraints order for every time I was non-compliant.

These are the sorts of things that trouble me about  forced treatment and/or outpatient commitment laws. It is not that I think people suffering from severe psychiatric illness do not need or deserve treatment, only that the treatments available are not always effective or tolerable. And until they are, I am not sure that the only way to go is only to force medication on everyone willy-nilly, not, at least against their protestations of extreme discomfort. At the very least every effort must be made to find a medication or medication combo that keep the psychosis at bay while making the person as comfortable as is humanely possible…which is difficult when a psychiatrist is saddled with a hundred patients to see in a week. It took Dr O and me six years or more to find  the right combination of drugs, and to titrate them precisely enough to treat my symptoms,  reducing them significantly while keeping unpleasant side effects to a minimum.

There is much about the treatment of the mentally ill that is so disgusting I cannot begin to cover them all here, though your comment is very thorough, which is why I have put it up  as a regular post. I appreciate your links to sites that do so as well. You did not mention one horrific situation: where under-utilized supermax prisons now house “uncooperative mentally ill prisoners” whose lack of compliance or cooperation is due solely to their illness. Though it is well-known that such brutal conditions drive “normal” or reasonably sane prisoners to insanity, can you imagine the brutality of forcing a psychotic individual to reside in such isolation? (Note however that in years past, as you know, isolation and seclusion of disruptive patients in hospitals was also the norm, since “overstimulation” from the outside world was considered to cause their agitation…I have been in hospitals where, in bare seclusion rooms, I was not permitted access to letters or phone calls, visitors or even reading material. As for restraints, they too were inhumane as I was shackled SPREAD- EAGLE, to the four corners of the bed and not, as even then was considered proper, with my legs straight and my arms in position by my side. This treatment moreover was considered normative for agitated psychotic patients rather than cruel in the extreme  as recently as the 1980s in some municipal hospitals in Connecticut.

I  recommend the book, THE DAY THE VOICES STOPPED, by the late Ken Steele, who wrote of his experience as a 14 year old with the savage isolation policies in NY hospitals in the 60s and 70s,  treatment that today seems literally incredible.

Well, I thank you for your contribution to my blog, Mary. You are welcome here at any time. I will post as many of your comments as I can.

Sincerely,

Pam W

Book, Poetry, Uncategorized, We Mad Climb Shaky Ladders, Writing

Jane Crown Poetry Radio

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Okay, all you poetry fans of mine, and anyone out there who reads this in general! This is a rather late announcement, but this Sunday at 5pm Eastern time (you will have to make the proper adjustments if you live in other time zones) Jane Crown, at http://www.janecrown.com will be doing a 90 minute interview with me http://www.janecrown.com/archive_radio/Pamela_Sprio_Wagner.mp3 that will be part personal interview and part poetry reading  both from WE MAD CLIMB SHAKY LADDERS as well as new poems, and she may possibly include some reading and/or discussion about my memoir DIVIDED MINDS: Twin Sisters and their Journey Through Schizophrenia. I hope as many of you as possible will listen, and if you are not interested in poetry will listen out of interest in schizophrenia, as we certainly will speak of that.

By the way, Jane tells me that the show will be archived and “available forever” so if you cannot sit and listen for 90 minutes this Sunday, do not worry as you can do so at any time and for any length of time. Just follow the link or do a search for Jane Crown and radio or poetry and you should find it without trouble.

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Now for an update: Well, first of all, let me say that I want to write an update but first I need to start my review of the poems I am going to read on Sunday, and read a little of DIVIDED MINDS, so I can recall what got into the book out of my 400pp original manuscript and what was cut. So forgive me if I put the update and rest of this post off for a few hours and get back to it maybe after 11 pm tonight. Or if not then, as I must get up early tomorrow, then I will write a new post tomorrow. For now, suffice it to say that I feel extraordinarily HAPPY!

Book, Poetry, Schizophrenia, We Mad Climb Shaky Ladders, Writing

Book of the Year Finalist

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Hi All,

Apparently We Mad Climb Shaky Ladders (CavanKerry Press, Feb 2009) my book of poems about living with schizophrenia, has been nominated a finalist for ForeWord Magazine’s 2009 Book of the Year (in the Poetry category). I dunno what this means, and I doubt highly that it will win, but I am very happy and grateful to have been made a finalist at all. The results will be announced on May 25th  at the BookExpo American, wherever and whatever that is. I’ll keep you posted, or perhaps you can keep me posted…

Here’s the cover of the book just in case you don’t know what it looks like:

Mental Health, Recovery, Schizophrenia

Schizophrenia: Dr Manny Show on FOXNEWS.com (new link)

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This is a link to the Foxnews.com Dr Manny show episode that was filmed in January. I think it is self-explanatory. Credit goes to Jessica Mulvihill, who did the interview, which was one of the best I have ever been “subjected” to (I have not yet found a word that adequately describes the process of being an interviewee…What do you call it when you have been interviewed, besides subjected to it? Any suggestions?) Anyhow, it was, despite the word, a very interesting and enjoyable interview experience.

http://video.foxnews.com/v/4056071/the-many-faces-of-mental-illness/?playlist_id=86899

Memory, Psychiatry, Schizophrenia

Seclusion and Restraints: Observations from the other side

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Here’s what my friend Josephine knows about what happened in October, having been my designated “contact person”:

 

According to Jo, I was admitted on Wednesday around noon. Apparently the nursing staff called her, as well as Lynnie, as my emergency medical sheet instructs.

 

She comes up to see me that evening, bringing with her some clothing and toiletry items etc. and while she is there she makes it clear to the staff that she is my “caretaker” and is to be told everything so that she can contact my family, when the need arises…(This seems to work, as it turns out, as she will be kept in the loop, thank god.) Anyhow, I am doing relatively fine, though the nurses say I refuse to take the medication the doctor prescribed, which concerns them. Apparently there are plans already being made for a hearing to force me to do so.

 

Before I fast forward to the weekend, when Josephine next sees me. I want to interlace here what I do recall, which is one conversation with the doctor, in his office, during which he tells me that he wants me to take Zyprexa.  “Have you heard of that drug before?” But then memory gets fuzzy, because I am back in bed,  in a bedroom I think is a double, though I am not sure, because I know that for most of my stay it is a single right off the nurses station where they can keep an eye on me, and just as he leaves, I raise up on one arm and scream, “I will NOT take Zyprexa, you F—ing bastard!” Dr Z stops in his tracks, looks back at me, and says, rather mildly, “That’s not very nice.” I finish off with, “Fu– you!” He has heard this before, clearly, turns on his heel and leaves.

 

The next memory I have must occur also before Josephine returns. I am sitting in a room with Dr Z  and someone I think is a judge or a hearing officer. A woman sits on my left, perhaps a patient advocate or a nurse, I do not know.  I recall specifically that Dr Z (whose name I only learn after I am discharged) seems to have spoken to the folks down at N hospital where Dr O practiced because he quotes what I recognize is their Axis II diagnosis, word for word.  This was created specifically for me by Dr O. in addition to paranoid schizophrenia and always struck me as  malarky but was a sore point too, and cruel as it seemed to blame my illness on me. (I had many words with her about it, and I challenged her  to prove it was true. She agreed it did not hold water, since it was only “true” in hospital, and so was just a convenience to satisfy  staff unhappy with my uncontrollable behavior — yes, there too, and equally unremembered!)

 

Nevertheless, it was written in my chart at N hospital and so now it is repeated as if gospel. In addition, the doc decides that he has seen, in two or threee days and five to ten minute interviews with me, “absolutely no evidence of narcolepsy, and no reason to treat for it.” He believes that my sister’s attempts to influence my treatment,  giving him my history of medication responses etc. constitutes improper interference and should not be permitted under any circumstances.

 

After that, I lose all interest in the discussion, knowing it is not going to go in any direction that will be in my interest, that I am being treated by someone who neither knows me nor cares to learn enough to treat me properly. Furthermore, having been taken off all the medications I have come in on (except oddly enough for my Lyme disease antibiotics) as having been “ineffective, by definition, otherwise you would not be here,” I am already feeling drowsy and distant, at a remove from the proceedings and not quite caring what happens. The proceedings come to an end when the hearing officer, or whoever he is rules in favor of the doctor, who wants to force me to take, not Zyprexa but Trilafon, 8 mg BID (twice a day) or Haldol by injection if I refuse. I may object and say I will not do so and will only take the damned Haldol kicking and screaming. Or perhaps I say nothing.  I don’t really know.  I may  only think this, but it is a prescient remark, or thought, in any event.

 

Memory becomes a series of refrigerator-dim flashes. I vaguely recall one incident: literally kicking and screaming while being held down for an injection by any number of security personnel…But even this memory constitutes no more than just an impulse of light on the confrontation, as if I am looking down on my body as I struggle with the guards, no more. Then just blankness.

 

What Joesphine tells me next is that she returns on Saturday, bringing my poetry book. She is appalled at the change in me and asks the nurses, “What happened to Pam?!” I am not merely irascible, she says, but explosive. I am mean and I am violent to the point that I will not let anyone  come near me. If they attempt to I lash out, not just verbally but physically as well, any number of times actually slapping, smacking or in some fashion hitting the nurse of aide trying to take my vital signs or give me medication. She tells me that even when I appear to be deep in thought, sleepy or sedated, I can in an instant rouse myself to fury and explode, launching into a tirade of invective and even physical abuse.

 

At the same time, I am ataxic ( one nurse gives me red  slipper sock to warn staff that I constitute a “risk of falling” but these are soon lost and not replaced) and while I can be wild and have the strength of a rabid animal, at times I have trouble simply getting myself out of a chair. Once, a big security guard, seeing Josephine struggle to help pull me up from the recesses of a deep armchair, comes over to help and I go berserk. Suddenly violent, I take a swing at him, swearing  and screaming at him as if he were the one to have attacked me, rather than the other way around.

 

Once Josephine looked into my bedroom before she was shooed into the day area with me, where all visiting was supposed to take place, she saw that restraints — big leather cuffs — had been placed on my bed. According to her, they were used as frequently as every time I got medication or even every night in order to keep me from — well, I do not know what! But I can only imagine, given how she tells me I behaved. I do know that restraints are only supposed to be used in cases when violence is imminent or uncontrollable by any other means. Now she does assure me that they were, so far as she could see, only two-point restraints, the wrist ones, but that they were actually placed on my regular bed horrifies me, since it implies that they were to be at the ready and expected to be used, i.e. they were not simply an emergency appliance to be acquired from a rarely used, locked cabinet unopened for months at a time.

 

As an aside, I discovered when I arrived home, many just healing scars on my left leg that were not there before I was hospitalized. Yet I also remembered telling a nurse at the hospital that of all the places I had been, their unit was definitely the most safe, the most secure. I felt that it would be most difficult indeed to hurt myself there, as there were very few opportunities and almost no chances were taken…So how can I square that with these scars? I cannot remember when or how I acquired them. I only know that the summaries of my chart mention that I did injure myself, early on, which resulted in four-point restraints at least once (another being the slip-knot episode already described). But with what, and why I have no idea. Probably because of command hallucinations, and self-hatred. But that is only my surmise.

 

I “came to,” I rose to the surface of my insanity only once or twice that I recall, once to see my father sitting by my bed (why was he allowed  to visit in my room?) and Josephine standing there while I screamed something. I remember she abruptly left. After that, the darkness closed over me again.

 

The only other time I surfaced was when they dropped me on the seclusion room linoleum…about which I have written in some detail. But even then, I cannot really remember if it was one whole incident, or two or three amalgamated by a trick of the brain’s confabulatory instinct, and  the passage of time into a single coherent tale.

 

Then there is my journal , which tells a story that in its own way corroborates this one. Usually when I am hospitalized at least in recent years I  keep a detained record of everything going on around me for reasons of paranoia if nothing else. Because of this, I can read back afterwards and understand what I was thinking or doing. This has not always been true, and during some hospitalizations, further back, I was unable to do so,  and thus do not have such a record, but I am glad when I do because it helps me piece together what happened during times that I otherwise experienced later as blanks.

 

However, during the two and half weeks and longer during which I was  literally out of my mind this past October (Josephine insists that I wasn’t “right” even when I got home, and that it took a good two weeks before I was truly myself again)  there is no written record, not in my journal. I wrote a little during the first few days,  going from a self-loathing that speaks of a desire to burn my face (“deface my face and face up to my sins”) mingled with psychotic ramblings to utter confusion. This is almost indecipherable and devolves suddenly on Thursday to nothing at all, represented vividly if accidentally by two blank pages. It is only on briefly on Saturday and then on Sunday, October 18th and Monday the 19th (which may have been only a continuation on Sunday, as I was still confused as to the date and time), which I firmly believe all day is “Monday the 20th,”  that I apparently find the strength and clarity to “steal” a felt marker from OT and then a memo pencil to write with. All writing utensils but crayons have been denied me previous to this, I remember that much, though I also have not been able to, have not wanted to write either or I would have done so even with a crayon.

 

Now, to my pleasure this marker and then the pencil is not  taken from me as too dangerous for me to have in my possession.d I begin to write. I write all day, literally. I write and write, 41 pages in one or two days. I write down everything that happens, and I write as if I know what has been happening, but really without the slightest inkling. It is clear that I have no idea what I have been through, nor what I have been like. I write of a nurse, one I clearly like, telling me I am “doing great” and my consternation at this, because I do not understand why she is telling me how I feel rather than asking me…

 

I write of my impending discharge, and I believe I write about how I don’t remember the last two weeks, but it doesn’t seem to bother me much. What does bother me is why no one on staff will talk to me, why people seem to avoid me, and why one male nurse seems bent on being nasty to me “for no reason.” (I may have made a point of hurting him during my weeks of insanity, that is all I can surmise as a reason for his animosity…).  I am paranoid — at one point I interpret the constant opening and closing of the weekend Dr H’s door, which I can hear from my room near the nursing station, as deliberate torture, intended to “get back at me.” When I finally get a glimpse of Dr H, I scream at him “You think I don’t know what you are doing, but I do, I do!”  He gives me a truly bemused look. I am thrown into confusion, not sure how to read it.  I  remain fairly certain, however, that he is “doing a number on me.”

 

(End of Part 1. I want to reread the rest of what I wrote during my last three days on the unit before discharge — then I will continue with Part 2.)

Memory, Psychiatry, Schizophrenia

Seclusion and Restraints: How it feels

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I remember, I remember, well, I remember very little, except in flashes of dim light, like a candle held up by which to read the fading pages of an ancient diary. I remember a sign with my name on it, taped to the door of a room, and how hard it was to find my way back, no matter how many times I made the trip. I remember a nurse with blond hair named “Patty,” whose real name, Lil, I learned only the second to last day I was there. I think I liked her, or that she treated me with kindness, and another nurse named Mary Ellen, who was kinder still, but not always there to save me.

I remember too, but again in uncertain flashes that tell me only that something happened but not exactly what: Being carried by arms and legs into a cold, empty room lined with linoleum, dropped onto my back on the floor, dressed in just two hospital johnnies and pajama pants and locked in there alone. I remember begging for a mattress, then screaming in outrage when I was refused.

This is how it goes: There is nothing in the room but me and air conditioning turned on full bore, though it is October and in the 50s outside. Why do I need johnnies or the huge pajama pants that are falling off me without ties to hold them up? Alone in that room, I take them all off, then squat to pee and take a dump. Good, that feels better. Blankness. Cold, cold. Again I scream for a blanket. Of course, nobody answers. I try to push the johnnies under me to cushion my bones so I can sleep, but the shivers prevent me from relaxing. I have to do something.

I make a long rope of the silky acetate pants then form a slip-knot and put the O over my head with the knot to one side. I pull tight, figuring it won’t take long. I sit to one side of the little window in the door, so no one sees me immediately. Finally they come running. But they don’t understand it is a slip-knot and that pulling at it only tightens it  more. I am struggling for air. A nurse yells for scissors, bandage scissors the only ones available and they cut the pants free. Still, I am in big trouble. I would tell them I only wanted to get their attention, that I just wanted a mattress and a blanket, but what good would that do? Still, do they really think their act of violence, which will follow, will solve anything? Blankness. I have been thrown onto a bed in another seclusion room. As staff and goon squad wrestle my wrists and ankles into padded cuffs, I kick and bite in protest, all of which will be written up as my being “assaultive.” In the end, it is no use.  I scream and scream until the usual injections – 5 mg Haldol and 2 mg Ativan – take the scream out of me and I finally fall asleep.

That should have been the end of it. “Wake up calm and they take you out of restraints.” That’s the name of the game. But this time, I wake and I am still in full 4-points. I ask the nurse why. “Doctor’s orders,” he says. “But that’s punishment!” I answer, shocked. “No,” he says, “restraints are therapeutic. We never use them as punishment.” “Bullshit! Dr Z is punishing me because he doesn’t like me and you know it. He is a sadist.” The nurse doesn’t answer immediately and when he does, he just says, “Go to sleep.”

I remember how they kept me in restraints for 12 hours that time. The chart summary tells me more, that I spent a good part of 5-7 days in seclusion and/or restraints, so there is a lot I do not remember. Am I better off for not knowing? That’s what some people tell me. How would you feel? Would you want to know, or not to know?

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I realize that the above is simply a restatement of an earlier more detailed post, so it must be obvious that I am still very troubled by what happened. Indeed I am. I am even more troubled by my lack of memory the rest of the three weeks there…which fact was noted even in the summary of my stay, which Dr B (Li) got from the hospital the other day (in lieu of what he requested, which was my entire chart.) Memory loss has dogged me for many many years. Only now can I acknowledge it, and only because Lynnie and others witnessed it. But for so many years I felt desperately  troubled and, well, desperate to hide it, afraid lest anyone know how little I could remember of what happened from day to day. This was especially extreme when I was in hospital but even afterwards it was troubling to me; sometimes I felt I was missing half my life! People — that is to say,  doctors. nurses,aides — expected me to remember ordinary happenings, because they obviously  thought that I was responsible for what I did from one day to the next, which you are not, not in the same way, if your memory is impaired. This expectation was so stringent that I dared not admit how little I did remember of events after they passed. I thought the scant trace they left would somehow prove my evil, prove that I was a shameful deficient person. So  I desperately took cues from others about what they wanted me to “remember,” tried to “pick their brains” about whatever it was that had happened, or that I had presumably done, whatever it was that they expected me to recall. Sometimes a concrete clue might help me piece things together – say for instance if I had scars or wounds that hinted at recent self-injurious behaviors or if there were scribbling on the walls that suggested another sort…But if there were no cues, it was much harder to ferret out what was wrong. Sometimes I might have to come right out and ask, “And you are referring to…?” But I didn’t dare do that often or it would have given my lack of memory away, something I didn’t dare permit…

Now here is the other side of the story, which I find hard to square with my experience in October: one  psychiatric nurse’s account of how situations involving restraints can look to staff.

 

Mad Pride, Psychiatry, Recovery, Uncategorized, Writing

Academy of Medicine – Poetry Reading for a Bunch of Shrinks?

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Wowee zowee, who’da thunk it could go so well? I was more worried than usual and I had this profound dread that — I dunno — somehow disapproval and dislike and even hatred of me would reign overall. Worse, that all those shrinks would find my poetry either cold and incredible (but who are they to say?) or somehow incomprehensible at least in part….This is not just self-loathing baring its usual fangs, but my deep fear that a repeat of my encounter with Dr Z in the Hospital in October would occur, writ large, or with so many others over these past 35 years. Truth is, I am terribly frightened of most doctors, of all sorts, and this despite the fact that I am all too aware, intimately so, of how human, how terribly flawed they can be and how despicably they can sometimes behave. Even so I am aware that I “give” them — give most people — way too much power over me (I have never understood that “give” but it must be true, though it feels like they take it, forcibly), power to dominate and judge and make me feel like shit. Moreover, I am so afraid of them and their power, that I become completely paranoid about — well, any doctor, really any health care professional, from technician to nurse to doctor, I need to see these days! and my mind conjures up scenarios about how they intend to harm me, complete with delusions and hallucinations that  corroborate every such feeling.

Just this past week, for instance, when my migraine, along with vomiting up what looked like coffee grounds, put me at the emergency room again, paranoia completely took over. I still believe that they knew everything I felt and perceived, indeed were doing precisely what I “knew” they were doing …. Why I even call it paranoia I do not know, when I believe it was real. Why? Because, because, because…I have to hope and pray it was paranoia. Otherwise life would be unbearable…unbearable! I would at this point much rather be told, reassured, that nothing happened there, at the ER, and that it was “only” my paranoia, than to find out that indeed I was right all along! No, I hope to god I was wrong! And if I need to be labeled paranoid in order to be wrong, then fine, so be it. Better than to be right and find out that what I was so terrified by really was happening there all along…

But where was I? I was speaking of Wednesday night’s reading. I started out — well, the problem began — I was fine up until that point mind you! — when we entered the building because unlike the hotel, it was vast and echoing which produced an immediate physical disorientation on my part, I felt off balance and dizzied, as if under attack and anxious…I wanted to get out from under those echoes and that vastness…So I was scared simply upon entering the building and wanted to get away from it…This did not abate, and being scared almost to muteness beforehand, it only got worse, esp when Mary left me alone in a big room just off the hall where the reception was taking place. I felt then as if I were going to disappear, to implode, to die, to be killed, if she didn’t come back quickly…I didn’t know how to escape and I knew that I would have to, that I would not survive otherwise and immediately. I slunk to the wall near the door, carrying all my things, my coat and bag and my poetry. Adrenalin shot into my chest and poured down my arms and legs, preparing me for flight, when suddenly Mary returned.

I think she realized what a state I was in then, and felt bad. Which only made me feel worse, and I couldn’t talk for a few minutes.  But I made myself pull myself together and I did calm down, and made it clear that to enter the room where the reading would take plaee once full would be much harder than to do so when it was still in the process of filling. So we went in, Mary going first and fending people off (so I felt) and when I finally had a chair beneath me, I could breathe again. Just knowing I could keep my head down and stop anyone from talking to me, even if they recognized me allowed me to relax, which was what I  needed.

In this room, which had some sort of insulation that baffled the echo in the halls and open space downstairs, the disorientation passed almost at once, and the adrenalin seeped away, until it was only at the level of keeping me alert, not so much alarmed and ready to flee. I no longer felt dizzied or on the verge of hyperventilation or even, as I had, such imbalance as to the possiblity of falling. It was weird  to the max but as soon as I left that room after the event was over, I had trouble immediately, having to negotiate the space with great care, using the banister to take the stairs and even so, feeling my feet and legs uncertainly take the steps downward and feeling the alarmed feeling build up and up the longer we remained. I felt even so that I could not hear properly, though all had left and there were scarcely more than 5 or 6 of us left in the building. I was so glad when we finally got outside I barely registered that noisiness by comparison!

But I am ahead of myself! First the “event” took place.

Barbara from the Foundation that sponsors and indeed is the originator of these humanism and medicine events did a brief introduction about the  Foundation itself, then my publisher got up in her striking bright red coat, and spoke, wildly enthusiastic, about my book. In bombastic terms she praised me endlessly, until I cringed and felt no one, least of J herself could possibly believe such drivel….. I can only hope she tones it down tonight as it was way over the top…upsetting me because I felt certain she was lying to herself and making everyone laugh at me as well. Finally, she was through and gave me the signal to do my thing. Luckily I had more than cut my teeth on public speaking with our book tour for Divided Minds, so I was fine, once I got started. Of course beginning with, How to Read a Poem: Beginner’s Manual, and a few words of explanation, put most people at ease. So you better believe I start with that almost without fail. What else?  And after that my spiel and that poem, I had them…as they say — in my hand. But really, they had me! You see, I was no longer terrified, nor intimidated. Instead I was having fun and wanted only to please.

The rest of the reading went swimmingly, with Mary providing a short intro to each chronological section of the book, and me reading about 3 poems from each, That way, I could let her do some of the organizing of the reading and taking some of the pressure off me, and it eased my tension a bit, even though I guess I could have done it myself, seeing as I had done so at Mystic (though I admit, there I had also started weeping near the end, thinking about Joe as I read a poem about him. In fact, it was probably my crying during that poem there that led Marjorie to suggest I stop at the so-called forgiveness poem, rather than continue through till four o’clock as I was scheduled to.)

In fact, I do not mind crying, it is mostly others who seek to save me from my own tears who mind…They are the ones who cannot take it, who think they have to save me from embarrassing myself, them, and the world. when in fact I don’t mind crying in public, any more than I could care less where I sleep! (I have slept in some pretty weird places, including right in the middle of a labyrinth in a public garden….Could simply not walk a foot farther but collapsed into a heap and slept for a couple of hours, oblivious to the fact of people staring or otherwise wondering what I was doing there, and my family having in disgust moved on…) But at the Academy, I was prevented from crying or at least it never became an issue which at moment, is a source of relief though I do not believe it would ever truly have proved a problem to me.

The following night, I was less articulate, possibly more tired, though I hadn’t felt so, just more tongue-tied, and less quick to think or respond…Nevertheless , the audience was very kind and laughed right on cue, which is more than I can say for the shrinks, kind though they were. and which this audience was not made of particularly. They even responded better, in terms of audible laughter to In Memoriam Memoriae. Laughing at the ending, and esp at the pauses where laughter was most welcome.

Oh, I am such a ham…But in truth this is only on stage, and nowhere else. And only in terms of the truth, not as a true actor, which I cannot be for beans…I dunno how to “act act” and wouldn’t want to. What I think I like to do is be myself, but be a goofy me, or a funny me, which others call, Play acting, but is really just being goofy, and me too. Can I not be goofy sometimes, or might i not achieve that state of innocence where one can play and be irresponsible occasionally? Why must one be staid and unimaginative and awkward and nothing always…

Well, I fear I must stop here, finished or no, as my face is coming off and I simply cannot stay awake longer. I have to go to bed because I am fading and losing touch with whatever i am writing.. When the fingers threaten to fall asleep on the keyboard and the keyboard becomes invisible because you are closing your eyes against your will, you know it’s time to sleep…And so I will, myself, take this body off to bed. Sleep well and good night.

Lyme Disease, Memory, Narcolepsy, Psychiatry, Recovery, Schizophrenia, Violence

Hospital, Hypomania and How Hope Eventually Returned…

2 Comments
Pretty tame for a seclusion room, but this one is in a school so it has carpeting not linoleum...The thought that little kids are held captive inside is pretty disgusting through.

I wrote in the post below that for three weeks in October I was in Manchester Memorial hospital (a new unit for me. To explain, the hospital you are sent to in this state these days is a total crapshoot. Sometimes the ER can admit you to theirs, but if it is full, as it so often is, they can send you literally to any hospital in the state that has an empty bed.. With the governor having decided to close one of the few state facilities still open and the municipal hospitals so over-utilized that an average stay was 5-7 days only, you can imagine how inadequate any attempts at treatment are. I do not mean to diss the hospital staff in general. Some do mean well and are appalled at what their jobs have devolved into, others however seem not to care that they are no more than warders in double-locked secure psychiatric units where few are admitted truly voluntarily or at least only on an emergency basis and yet no one can stay until healed. Generally speaking, one stays only until such a time as they are either no longer acutely suicidal or no longer a danger to others… That said, I have to be somewhat circumspect about what I say and the judgments I make as I was and tend to be when in any hospital so paranoid that I simply cannot draw any reasoned or reasonable conclusion about the staff or the treatment there, since it is always more or less (and usually more) through the lens of my sense of  personal attack and persecution. In truth, I scarcely remember any of the details or even the gross facts of this particular hospital stay. In fact, I have had to be told second hand, or even third hand, most of what I did there and/or of what happened.

I can say a few things from memory, though, and the picture I posted above is relevant to that: I remember being hauled off to the seclusion room and more than once. (I do not have even the slightest scrap of memory why…which is unnerving, and yet also a relief, as it protects me, possibly, from memories I might not wish to have…I hasten to add however that my lack of memory is not psychological, but neurological: we were warned by my Lyme neurologist that I should not have ECT while I still had CNS Lyme disease as it was likely to produce untoward CNS effects that could not be controlled or predicted. Since then, my short term memory has been particularly affected, among other things (e.g. olfactory hallucinations).  IN other hospitals, the seclusion room usually had a mattress in it, something upon which you could lie down, and were expected to, in fact, since you were given medication and expected to calm down and sleep in general. At other hospitals, I stayed in the seclusion room for an extended period of time, either because I was extremely disruptive (NOTE: see posts about Natchaug Hospital regarding this) or extremely psychotic. At those times I was usually permitted other items in the room, such as magazines and some small personal things to pass the time with…But during the month that is ending, I was literally manhandled into the room and dumped on the floor — hard linoleum — stripped, forced into a johnnie coat (I had to beg for 2), and summarily left behind, the door locked decisively between me and whoever was posted at the observation window.

I remember screaming, I remember begging for a mattress to sleep on, I remember begging for something to cover myself with for warmth or at a minimum for the heat to be turned up as I was thin and it was notoriously cold on that unit, and there was nothing whatsoever in the seclusion room to buffer the air conditioning. No deal. They just told me to be quiet; actually, I do not believe they even said that, but just, No. I do not remember much more than that. In fact, though I have been told the next, I do not actually remember it: there was of course no bathroom facility, and not even a bedpan in the room. Someone told me later that I defecated into a cup…But I do not see how that is more reasonable than that I did so into a bed pan…Why would I have a cup in there  if I did not have a bedpan…No, I believe that in both instances I have been told about, I peed and defecated directly onto the linoleum. If I did so, I cannot explain it. Perhaps I was simply desperate and they did not provide any other mode of relief. Maybe I was angry at them, and did it to “get back at them”? (This was suggested to me as a motive by the person who told me that I was not the first and would not be the last person to do this in that room…which was both a small source of relief, to not be unique, and yet to have done it as a kind of revenge?!  I did not want to believe that I would or could be so primal in my anger…But then, I have done it before, if you recall…

After that — and my memory wants to “see” this, feels it almost can and almost does, but I cannot be sure that it is memory rather than a mere confabulation  after the fact, having been told the bare bones of it by Carolyn (Lynnie) and others, who themselves only heard about it but did not see it either…after that I believe I crossed the room to , hoping there was no slant in the floor that would make the puddle slide towards me, and lay down in a heap and fell asleep.

Or did I? Did I? Or were there consequences to my act? I know that at some point in my “stay” — seems so mild to call the brutality of my hospitalization merely a “stay,” as if at a spa —  I was put into restraints and kept there a very long time. Was it for a separate incident, or was it connected to…Aahhh, wait a minute, yes, I do know, I do know…I remember now…For some reason, and I do not quite remember why, except possibly I was just so sick of everything that was happening, and so…I remember taking off the hospital pajama pants that were way too big for me anyway, and never stayed up and had no ties to pull around my waist and so were useless. I pulled them off and wound them into a narrow rope, which was easy as they were made of very thin material, then I formed them into a kind of slipknot,  fitted it over my head and around my neck and pulled on the  one end that had to be pulled for the knot to tighten, holding the other  like a kind of ballast (I don’t remember entirely how I did this only that it felt dreamlike, how easy it was to accomplish). I have forgotten what I was thinking, if I thought at all. Probably I did not think, I was that far beyond any rational thinking, even beyond any rational “wanting” in the sense of really wanting to die or not.

In any event, it seemed to take a long while before anyone noticed, and then a whole crowd of people were suddenly upon me, and they didn’t seem to know how to get the noose off  or how to loosen it. I held the end that slipped tightly in my fist, having no desire to relinquish it, though at the same time having I suspect no real desire to die either, that they could not easily free it. I heard someone yell to cut the knot. I remember thinking that was silly, why didn’t they just untie it? But it seemed that that was not possible, or at least that it was taking too long.  Then there was a pair of scissor up at my throat where the knot was — it seemed that  only bandage scissors could be found and those were not easily accessed — and someone was ripping at it, and then it was torn away and my neck was freed.

Stop. I have to stop here. Memory now fails me. I can only speculate what happened after that, because it literally blurs into nothingness. Goes blank. Goes back into the vault wherever all my lost memories go, perhaps never to be retrieved, if never fully or adequately formed. All I can do is try to reconstruct what might have happened next. I am pretty certain that it was after this that I was put in restraints. It would make sense. After all, what else could they do, and what would make sense? If I wasn’t safe in a seclusion room, in a hospital that in fact DID resort  to seclusion and restraints, it seems only likely that restraints would be the next measure taken. So I have to assume that it was for that reason I was put in four point restraints. Also, since the doctor I had been assigned to, thought a sadist by many on the unit, was  also the director of it, it was likely his call that led me to being kept there for more than 12 hours, and maybe as many as 18…I honestly have no idea in the end how long he kept me in such a fashion, only that I was not released even after I had fallen asleep…

That is almost the sum total of what I can, as a kind of “hard copy” memory, remember on my own. As you can see, even with those few memories, I had trouble and some help in recalling them.  I have some vague sense that a great deal went on during those 2 and a half weeks when I was largely insensible to what I did (at least to the extent that I did not recall it from moment to moment). During the last half week when I finally cracked the paranoia that kept me imprisoned, my memory did not improve, only my temper and the distance I kept from and my anger towards those who I had earlier felt were working in cahoots to hurt me. My impression then was only that some people were angry with me, but I did not know why, that some people resented me…But I could not figure out why. The ones who seemed to brighten when I smiled and help nothing against me told me gently a little about what I had done or how angry etc I had been, but only vaguely. They did not seem to understand that I had literally no memory of the previous 2 and a half weeks, or if they did, they did not seem to want to refresh my memories, perhaps feeling that it would be unkind, I dunno.  In any event, I learned a little about the “Pam” that some thought they knew, or that some people thought they had met and known for those 18 days…and that others had believed was in there all along and were now  glad to see emerging…But it was very confusing. And in all that confusion, I also had to deal with the fact that the new doc who had taken over after the sadist doc was removed from my “case” thanks to Lynnie’s intervention,  had decided that his philosophy of short hospitalizations would take precedence over whether or not I was fit for discharge, and so I was to leave on Tuesday…I had no choice, and so as I prepared to leave, I also had to “prepare a face to meet the faces that you meet.” (a quote from “The Love song of J Alfred Prufrock” by TS Eliot). But I was also growing more and more revved, more and more anxious. and I had no one I trusted enough to talk about it with. I certainly could not tell the day nurse. (I don’t think I did, but I do not actually recall one way or another). I knew she disliked me intensely, for all that she tried to pretend otherwise.

In the end, I did leave that Tuesday, though even as I got into Josephine’s car and she pulled out into traffic, she told me I didn’t seem right to her, that she didn’t think I was well or ready to leave. That fact seemed clear to almost everyone I saw that day. And not long after that I grew so talkative and revved that no one could get a word in edgewise…This was so emphatically not like me that thank heavens everyone put up with me, and no one, NO ONE, rejected me or gave up on me for it. I do not remember anyone being cruel or saying, GO away, you talk too much, or you are being too egocentric etc. I recall in fact only kindness and some humor injected into the situation, but mostly kindness. They all, my friends, as well as Elissa, the RN, seemed concerned as I rocketed higher, and yet seemed to feel uncomfortable and not at all happy with how fast I was speeding. Sure, Dr B diagnosed it a hypomania, but I  had thought hypomania was an enjoyable state, not this unpleasant adrenalinized racy state that felt so terrible to me. I hadn’t taken Ritalin in 3 weeks, but I didn’t even want to now. No, taking stimulants for Narcolepsy was nothing like this. This felt terrible and  neither Ritalin nor even Adderal had ever felt so terrible. There was no pleasure or even alertness that made me want to do things and study and write involved now. I got a little more cleaning done, true, but only because I was trying to exercise off anxiety, not because I had pleasureable energy. In fact, had I been able to slow down, I would have gone to bed to sleep it off!

Eventually, Dr B upped the Topomax and I think we had already increased the Lamictal and eventually over the course of the next week, I came down to my usual state of semi-sleepiness and was able to restart the Ritalin (after some discussion about why I take it…He is still new to the situation and my narcolepsy)

Well, that is about all I can tell you about the hospitalization just passed. But there was more to it, and what I know about it, though the facts are vague, is that there was something massively wrong…It felt like the Y2K meltdown in some ways, esp in my lack of contact with — reality, memory? Is there a difference? I feel that this was very different from my usual post-lyme hospitalizations, that I was in a different state, and so did others. It frightened me more, and it was more violent. Certainly the treatments were more violent, but that also implies that I was too. Lynnie keeps telling me she will talk to me about it. But so far, she has not… Do I really want her to?

Mental Health, Psychiatry, Schizophrenia, Uncategorized

Mary Neal Tells Her Story

5 Comments

I am going to try to embed the youtube videos of Mary Neal telling the story of what happened to her severely mentally ill (but non-violent) brother Larry M Neal in Shelby County Jail, TN, but I am not sure if it will embed or not. Here goes nothing! Ah! It did work, So the top one is first and the second one is last. PLEASE WATCH. and then go to the website mentioned in the post below this one and see more details of what is going on. This never ought to happen in the United States, it is evil, but it does, and it happens far too often. I think Johnnie Cochran would turn over in his grave if he knew what had happened to and within his firm after his death…

Thanks, everyone!

Book, Poetry, Schizophrenia, Uncategorized, Writing

New Book Is Out: Poems on Schizophrenia

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Yes, I finally hold it in my hands, We Mad Climb Shaky Ladders, published by CavanKerry Press. Below is the cover illustration (minus the Spiro, which is on the final version) and the press release:

We Mad Climb Shaky Ladders: Poems by Pamela Spiro Wagner
We Mad Climb Shaky Ladders: Poems by Pamela Spiro Wagner

NEWS from CavanKerry Press
6 Horizon Road No. 2901 • Fort Lee, New Jersey 07024 • phone/fax 201.670.9065 • cavankerry@optonline.net

FOR IMMEDIATE RELEASE

Contact: Florenz Eisman — 201.670.9065

WE MAD CLIMB SHAKY LADDERS

Poems

Pamela Spiro Wagner
With Introduction and Commentary by Mary B. O’Malley, MD, PhD

Foreword by Baron Wormser

For forty years – longer than her entire adult life – Pamela Spiro Wagner has been affected by paranoid schizophrenia, a plight she eloquently explored in her award-winning book, Divided Minds: Twin Sisters and their Journey Through Schizophrenia, co-written with her twin sister, psychiatrist Carolyn S. Spiro, MD. Also an accomplished poet, Wagner has long utilized the language and emotion of poetry to express the individuality of her mental illness, capturing with vivid candor her singular inner world. In WE MAD CLIMB SHAKY LADDERS, the latest volume from LaurelBooks, CavanKerry’s Literature of Illness imprint, Wagner for the first time collects her poems, presented with commentary by her psychiatrist, Mary B. O’Malley, MD, PhD, that elucidates the clinical roots of the poet’s art.

WE MAD CLIMB SHAKY LADDERS “is much more than a testimony to a diagnosis or pathology or terminology,” writes Baron Wormser in his foreword. “The poems emanate from the place of the poet’s illness but they are resolutely poems—well-written, sensually alert, quick to turn and notice and startlingly honest. They dwell on both sides of the equation of life and art: testifying to the powerful and tenuous links between the two and demonstrating that art is capable of holding its own regardless of circumstances. Some of those circumstances have been shattering. The sheer tenacity that it can take to write poems makes itself felt here in ways that are both uncomfortable and reassuring.”

Wagner’s often harrowing struggle with life, as reflected in these poems, has been marked by psychological turmoil – periods of total debilitation, as well as intervals of recovery and hope. Her battle with paranoia hovers over the work, such as in “Poem in which Paranoia Strikes at the Grocery Store” where the simple act of shopping becomes a waking nightmare: “Who/gave you permission to enter? No one/wants you here. They are all watching….You are being followed./You are on your own.” Wagner captures the voices in her head with terrifying urgency. In “Offering,” Wagner’s very first poem, written in 1984, she writes of her compulsion to burn herself with cigarettes with a haunting remove:

The tip of the cigarette glows and grins
as I lower it to you,
Unlover,
alien body.

At Dr. O’Malley’s urging, Wagner has also included three poems she wrote during the heights of psychosis, and these are filled with scrambled ideas and garish imagery that are shocking in their raw, unguarded unveiling of the poet’s troubled mind.

Divided into five sections, Wagner’s book covers childhood and the earliest indications of illness, the years of illness, recovery, coping, and new beginnings. As with most poetry grounded in autobiography, there are important familial relationships that seep into the poems – father, mother, sister, friends. Here, these relationships are filtered through the poet’s psychosis, colored by hallucinations and delusions, yet grounded in the emotional truths that any complicated relationship engenders. In her most widely known poem, “The Prayers of the Mathematician,” which won First Place in the BBC World Service international poetry competition judged by Wole Soyinke, Wagner moves beyond the personal with an eloquent poem about John Nash, the schizophrenic Nobel Prize winner who was later immortalized in the movie, A Beautiful Mind.

“These poems are the work of a first-rate writer” says surgeon and best-selling writer Richard Selzer of WE MAD CLIMB SHAKY LADDERS, “one who has sounded the well of her own suffering to retrieve the wherewithal to transform pain into the most powerful and moving literature.”

~~~

About Pamela Spiro Wagner

Pam coral and green
Photo of the author in May, 2009

A prize-winning writer and poet who suffers from schizophrenia, Pamela Spiro Wagner attended Brown University and went to medical school for one and a half years before being hospitalized for psychiatric care. She won First Place in the international BBC World Service Poetry Competition in 2002, and co-authored, with her twin sister, Divided Minds: Twin Sisters and their Journey Through Schizophrenia, which won the national NAMI Outstanding Literature Award and was a finalist for the Connecticut Book Award. Currently she writes at http://WAGblog.wordpress.com. She has lived in the Hartford, Connecticut area for 33 years.

CavanKerry Press would appreciate two tearsheets
of any review or feature you publish about this book.

WE MAD CLIMB SHAKY LADDERS by Pamela Spiro Wagner
Publication Date: 2009
Price: $16.00; ISBN: 978-1-933880-10-5
Distributed by: University Press of New England (UPNE), 1-800-421-1561 or 603-448-1533, Ext. 255

Author is available for speaking, readings, and workshops.
Contact: pamwagg@cox.net or pamwagg@yahoo.com
Tel: 860-257-9188

Brain, Schizophrenia, Temporal Lobe Epilepsy, Uncategorized

Schizophrenia and Temporal Lobe Epilepsy (cont.)

1 Comment

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?

 

 

 

Blog, Recovery, Schizophrenia

Three Schizophrenia Blogs plus…

2 Comments

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

http://www.boston.com/bostonglobe/ideas/articles/2009/03/22/a_talk_with_judi_chamberlain/

and then follow it in more detail at her blog here:

 

http://judi-lifeasahospicepatient.blogspot.com/#mce_temp_url#

 

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.

It was then that I decided that I want everyone who meets me—whether in person or on paper—to feel good afterwards. I’m open and honest about what happened to me because I believe that people can recover. “Only silence is shame,” to quote the Italian anarchist, Bartolomeo Vanzetti. And if I kept quiet, what would be the point?

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.”

 

http://www.christinabruni.com/index.html

 

 

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.

 

http://overcomingschizophrenia.blogspot.com 

 

 

 

Narcolepsy, Recovery, Schizophrenia, Xyrem

Schizophrenia and Sleep: Is Psychosis a Waking Nightmare?

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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.

Recovery, Schizophrenia, Writing

Schizophrenia: Recovery and the Reality Test

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There have been many stages to my recovery since my first hospitalization at age 18 and really since age 31 when I was formally diagnosed with schizophrenia. While there were countless hospital stays, sometimes 6 in a year, or  2 three-month stays practically back to back, I managed to climb back up to a place where I could go back to the world and function well enough to write poetry, all that I asked of life. With better drugs being available and also better treatment of the mentally ill and improving attitudes towards us, I experienced what you might call a breakthrough each decade. It never quite made me whole or happy, but each mini-recovery lifted me a little higher out of the muck of depression, despair and anhedonia (loss of the ability to feel pleasure)– for a time at least. And each breakthrough gave me lasting tools to deal just a bit better with the next onslaught. I can’t say I learned very well or very quickly, and insight gained with great difficulty abandoned me time and again at the very moments I most needed it. But I became able to write about these episodes after the fact and to learn from them later. At the very least, I felt I could teach others from what I was able to put into the written word.

 

One of the hardest to learn but most useful tool in my recovery tool box even to this day is what I call: The Reality Test.  It sounds so very simple, consisting of the need to challenge a delusion or hallucination by asking the people involved a question pertaining to the matter, such as, Did you say such and such? Or Did xyz actually happen?or Did you hear what I heard? The key thing is that after you ask the question you must listen to the answer and trust that the person’s answer is the truth. Often I would do everything except for the last part, where I balked, and simply accused allof lying to me unless the other person corroborated my paranoid assumptions.

 

 

Until I learned it, and could do it fully, including the trust the truth part, I had no idea that I was living in something other than consensual reality. Even though people told me again and again that I was paranoid and delusional, I figured they were just using such words against me, to hurt me, insult me because they did not like me, because they had hated me from the minute we met. But once one especially frightening delusion dissolved in the light of reality, it became clear to me how much time I had been spending in a fictional world and how often I needed to use that reality test, which is to say, all the time.

 

 

Lack of insight. That was the fundamental difficulty. I did not know that I had  a problem. The reality test gave me insight, but it often took me a month long hospitalization to understand how to use it and why. Some people with schizophrenia are fortunate enough never to lack insight; others like me seem to have it, then lose it; have it, then lose it.  This is as true for me in 2009 as it was in 1984. But we all know some who remain unaware of being ill all their lives. If there were a magic wand I could wave to change this, I would tell you where to find it. I have only found insight in the accident of using it. Perhaps it is different for each individual. If you or your loved one cannot understand that there is a problem, do not force it, it will not do any good: you cannot see colors if  your eyes have no cones. What you can do is find a way to have them agree to take medication anyway — as a condition of something else more desirable. Knowing that I stayed out of the hospital for 18 months while on all the meds, I once decided to force myself to take them and started doing so in the hospital where I had been refusing them. I wrote up a contract, signed it along with the charge nurse, and gave it to the staff. It said that if I refused any medication all my writing materials would be confiscated for 24 hours. Since I wrote up to 15 pages in my notebook every day, it was the only threat I knew that had teeth. With that contract in place, the thought of not being able to write so terrified me that I did not refuse medication even once.

 

          Of course, there has to be some basic alliance with a person for such a contract. It seems to me to be cruel to arbitrarily impose such a thing without consent, though I tacitly agree that where medication is a matter of life and death, or jail versus staying at home, or in other critical circumstances sometimes this can be necessary. I understand that some people with schizophrenia will be horrified by this suggestion, but I, have been around, done things that I wish I had not done, and know this should have been done to me a lot earlier for my own good. In fact, it was. I have been under court order, in the hospital, to take medications I hated and even to accept ECT. But here in Connecticut we have no mandated out-patient treatment law, and so no one could force me to take medication once I was discharged, to my great detriment. So in and out of the hospital I bounced, on and off medications — whether Thorazine, Prolixin, Clozaril or, worst and best of all, Zyprexa, I would never stick to any proposed regimen –about which I was so ambivalent. They should have taken me off Zyprexa and put me on Haldol once and for all. But I loved Zyprexa as much as I hated it, and could never decide to simply give up on it altogether. 

 

Now I am on 17mg of Abilify twice a day plus a full dose of Geodon. Two antipsychotics. Two anti convulsants. An antidepressant. A stimulant for narcolepsy. A beta blocker for side effects, specificially Geodon induced akathisia, and two antibiotics for Lyme disease. But I take them, supervised by a morning and evening visiting nurse and wow, what a transformation. They are not like Zyprexa, no, my world is not suddenly Imax, or HD compared to the ordinary. I have difficulty reading, for one thing, though I am able to do so and enjoy it for short periods. But I used to struggle to write and found it hard to get over the initial hump that blocked my way.

 

Now, though, now I write like wild fire. I write and write — pages a day, in my journal, in email, even here, in my blog. I write more often than I ever did and have to control the urge to write here more often than once a day. I even have to curtail the desire to write every day, lest I not do anything else! But it is a wonderful feeling to be so freed up, to have words surge like an electro-chemical river from my brain down through my fingers and pour out into the world!

 

So I see how medication can have active benefits now, not just side effects. It helps me want to stay on them, insight or no. It is what I wish everyone with this illness could see and understand: that their lives could be better, that they could be less confused and frightened, less tormented by voices and visions or terrifying intrusive thoughts that others label delusional, that the world could offer some happiness with other people in it, if they would but surrender a tiny bit of what? freedom to be crazy? to suffer? and agree to swallow medicine. Then, I must add, it behooves the doctor, knowing this momentous decision has not been taken lightly, to work to find the least uncomfortable most effective regimen, not simply slap on some all-purpose drug or long-acting injection with no regard to the individual taking it.

 

There has to be an alliance. Let me say this again: there has to be an alliance between the doctor and the patient, and the alliance must be a two-way street. If the doctor wants to trust the patient to take the meds, the patient must be able to trust that the doctor is prescribing the proper medication and is willing to listen to him or her if it proves to be not quite right. If the patient cannot trust the doctor in this, how can he or she learn to trust enough to “get” rather than forget the reality test? 

Lyme Disease, Mental Health, Vision therapy

Vision Therapy and Schizoaffective Disorder

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I combined two subjects in my heading –and they are related — in order to “recapture” as many readers who might come back looking for an entry after three weeks of nothing…

 

I’ve been in the hospital. Yes, a relapse of schizoaffective disorder, due, I think, to stress, poor sleep, worse eating and terrible time management,  in tandem with a flare-up of the underlying infection  of Lyme disease (for which I’d had a positive Western Blot test as late as 2006, five years into treatment).

 

I was in fact overwhelmed, sad, depressed, tired and sick of it all. I wanted to write and do my sculpture and it seemed as if everyone wanted many and more pieces of me and my time. Despite all the successes of the past year, I felt hopeless to change things On Effexor, after a long two and a half weeks, my spirits rose and my hopelessness diminished. I was able to unblinder myself, removing the brimmed hat I wore day and night, and enter the world again (in terms of mood, the affective part of the disorder).

 

In terms of the schizophrenia aspects of the disorder,  this hospitalization was brutal. I heard my name, my full name, being called 100 times an hour, on any given day. When people spoke to one another within my view, I could see (and heard it) that every word  spoken between them was my name, and nothing more. The entire ward had nothing better to do than to persecute me by saying, yelling, whispering my name.

 

Then one day something that really scared me, they whispered, “I’m choking myself. I’m choking myself. Pam, start choking yourself. Start choking yourself.” Always, almost always before this time, when faced with such “command hullucinations” I blindly obeyed the directives of the “dictator-voice,” too afraid to do otherwise. This time, rather than obey and do as he or they insisted, I ran out of my room. I looked up and down the hallway for anyone — anyone! — a mental health worker, a nurse, even the ward secretary would do.  No one .

 

What to do? What to do? I raced back to my room, stood  just inside the doorway. No, I could not stay, not with this voice assaulting my brain. I had to find help. Somehow. Then I heard someone coming down the hall, briefly stopping at every room to check on its occupant: the mental health worker “on the floor” which is the say, the one who was assigned to do fifteen minute checks that evening. Stacy, with the long dreads, was  just the person I needed.

 

 

“Stacy,” I whispered urgently when she came nearer. “Stacy, I need to tell you something.”

 

“What is it, Pam?” she smiled.

 

“They’re telling me to start choking myself.”

 

“Who is?”

 

“They are, the people who talk to me, the voices if you need to call them that.”

 

She frowned. “You aren’t going to act on that, are you. Now, come. Let’s find your nurse and see what he can do for you.” Then she took my hand and led me up the hallway to the medication room where Paul was doling out nighttime pills too early for my taste. “Paul, I think tonight, Pam needs her antipsychotics early. What does she have?”

 

He told her what I was taking, and they murmured together a little. I assumed they were discussing what I’d just told Stacy. After I’d taken the pills, Stacy again took me by the hand and walked me down the hallway to my room.

 

“You gonna be all right now?” she asked.

 

I nodded, dubious that the meds would do the trick, but hopeful in any event. I knew now that I could in fact ask for help and be given it, that I did not have to obey the voices not even when they demanded action.

 

But that was only one of many, many incidents. I won’t bother to recount them all, or even just one other, not right now. All I want to say is that the voices never did let up until the final weekend, due to stress caused by a very disruptive patient. It was only the weekend before the day I was discharged, when she’d been booted out, that the ward was tranquil enough for the voices to diminish, and then by Monday begin to cease. Yet even at the very same time, another problem reared its head…

 

This is chronic neuro-Lyme: plots abounding, exaggerated startle, acute dyslexia, increased paranoia and rampaging ideas of reference…I had them and worse in 2000 during the massive psychotic break at Y2K and I had all or most during this hospitalization in a diminished form, when the antibiotics were changed and failed to protect me from a recrudescing infection.

 

Now, why or how does Vision Therapy tie into this? It is related because while in the hospital, that closed-in space with blinds on the windows so the view is largely obscured, I lost my ability to see 3-D, to perceive depth and space. I even lost my ability to read or untangle letters on the page or properly read the words on a computer screen. I noticed this one day when I looked to see if the pen was clearly above the paper, and found that I could not easily say that it was, that I was deducing it from the overlap and the shadows. Occasionally, depth perception would flicker on then off, and it was delightful, but most often I found it was off, and decided to let it be. I knew how to restore it, that it could be restored, and that Dr D would help me if I needed help. So I figured, the worst would be I’d have to re-train my eyes, but the best part of that would be the thrill of re-entering the beauty of the borderline between 2D and 3D.

 

In the follwoing posts I plan to describe the Vision Therapy sessions that help me regain my depth perception, and also in others discuss aspects of schizoaffective disorder, the schizophrenia aspects as well as what I know about depression.

 

Stay tuned…

Brain, Mental Health, Psychiatry, Schizophrenia

Delusions and Paranoia: past experiences

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During the second part of what I call my Y2K Meltdown, when I was hospitalized for 3 months, first in central and then in southern Connecticut, I was extremely — but what I call serially– paranoid. What I mean by this is that plots occurred to me one after another seemingly without end. A new conspiracy would “appear” out of nowhere, as of course paranoid plots tend to, generated as they are by that two step process, described in the “Paranoia and Hallucination” entry. It would “do its thing” as they say, run its course, wreak its own havoc, then having done so, pop or be defused, and disappear. But almost immediately and, without my having any sense that this was happening or had any pattern, in its place another conspiracy would arise to take its place.

 

An example: at one point during that same hospital stay, having smelled what I was certain was marijuana coming from the art supplies room, I became convinced that the staff had been infiltrated by drug dealers selling weed and stronger drugs to patients. I’d mentioned the smell — no doubt some innocuous meaningless odor, if it existed at all — to a male nurse, and the look he gave me convinced me that he was involved. As a result, I realized that my knowledge of the presence of drugs on the unit made me dangerous to him and the other dealers. I felt frightened that he might retaliate, threaten me, or worse, hurt me when no one was around or could help me or know he was responsible.

Terrified enough to start talking, I told the doctor, and I called my sister and begged her to come in and sign me out. Please take me anywhere else, I begged. I would agree to any other hospital only get me out of there where I was in mortal danger. It was, I knew, after visiting hours, indeed it was after bedtime, but she had to come in and get me, now, or I might not survive the night.

 

Incredibly, she actually came in, if only to make sure that the staff was aware of my extreme distress. I knew only that she came to check out the drug situation and was devastated when she left without taking me home with her, though by then she had managed to “talk me down” some, convince me that I was in less danger than I believed, and that at least some of the staff were on my side and would be watching out for me all night.

 

Somehow, her words got through to me, and by the next day, the matter of the drug  conspiracy was resolved, though I cannot recall exactly how.

 

All I know is that as the urgency of that situation ebbed, I became aware that a new patient had arrived on the unit. Cally wore a raglan-sleeved sweater made of what I immediately apprehended was a washable wool yarn called “Candide.” Now, I knew only one other person aside from myself who knitted sweaters like that made of Candide yarn and she was the woman who had taught me to do so. “Lisa” not only knitted many such a sweater but did so for her long lost daughter, “Cally,” who had been given away for adoption many years before. The fact that “Cally” lived in North Dakota, last I knew, was of no importance to me. What seemed of paramount, vital and decisive importance was 1) the Candide wool and raglan sleeves, and 2) the fact that Cally appeared to have Lisa’s ballet-slender body type. These two coincidences in fact absolutely clinched the matter. Cally was “Cally,” wasn’t she?

 

These equivalences might not have been so critical to me, except that, it suddenly seemed that Lisa had died. She had committed suicide, so the message was communicated to me, and I had now to inform Cally of the fact that I’d known her mother way back when. I felt it was incumbent upon me to tell her what she had been like, that was the mission I’d been given. But  first I needed to ascertain beyond a shadow of a doubt that this Cally was indeed Lisa-my-former-friend’s daughter “Cally”…

 

If this was not a true paranoia that instantly arose following the death of the drug dealing plot, it was a delusion coupled with the felt urgency to act on what I was certain I knew (not so different from the marijuana delusion after all). And it was only one of a long string of plots and serial delusions that followed one upon another almost without a break that winter and spring. Just as I described in my entry of the other day, not once in the midst of any of these conspiracies or delusions was I cognizant of what was going on or able to step back and analyze the situation with any objectivity. At that time, I did not even have the tools I have now to dissect an incident after the fact: I was at the utter mercy of my brain illness, without any insight whatsoever. Now, at least, I can step back after the experience and say, Wow, I must have been really paranoid to think such a thing, or That was a hallucination after all…My goal, and a real triumph would be to recognize these things in medias res, that is, right while they are happening, but so far that does not seem to be possible.

 

Lyme Disease, Recovery

Potholes on the Recovery Road

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Those of you who used to read WAGblog at schizophrenia.com know it has been a long slog — 70+ hospitalizations over the course of almost 40 years means more than 9 years in the hospital. Sometimes even now the road gets potholes and rocks, becomes almost impassable, though I am much better at simply, well, slogging my way through. Still, the year from October 2007-November 2008 has been one of the best I’ve had both in terms of my illness and of my general happiness and productiveness. With regards to the first, I have stayed on my medications and as a result stayed out of the hospital. Indeed, over the year I was able to cope with vicissitudes that might have undone me without them, including the death of a very dear friend. My artwork – large-scale papier mache sculptures – has become very important to me, even life-saving, with jewelry-making on the side which I hope will become one day a source of income if I am lucky. As I told my father a couple of months ago, spontaneously but with a rush of feeling that surprised even me: I enjoy everything I do. I wake up in morning and I can’t wait to get to work on my sculptures or my writing. This is not to say that I have no problems, have no hard times or things I have difficulty with. It is not to say, even, that I don’t dread certain activities like parties and holidays. I am terrified of simply calling a stranger on the phone! But what it means is, in general nothing bores me, everything I do interests me, which is a gift beyond measure. So what I tell myself, before doing something I believe I will find difficult, is: At least you might get a poem out of it. And that is enough to encourage me onward.

I am having some difficulty right now, true. Hypersensitivity to stimulation, increased paranoia and voices — I believe this is all is due to infectious disease recrudescing in my brain, rather than schizophrenia. Which is to say that I believe my schizophrenia has a known cause: Borrelia burgdorferi, or Lyme disease.

[Excuse the tangent here: Certain schizophrenia researchers believe that an infectious origin for schizophrenia is very likely. Why not Lyme? B. burgdorferi is a spirochete bacterium, carried by deer ticks and causing an illness much more common now, at least in southern New England, due to humans encroaching on deer habitat. With deer, which naturally harbor deer ticks, the vector carrying Lyme disease, having to co-exist so closely with humans, no wonder the incidence of Lyme disease has increased in recent years, at least in southern New England. I believe we would find it had sky-rocketed if there were a decent test for it and we actually did widespread testing. But there isn’t and we don’t.

Nevertheless, according to the tests we do have, I have been positive three separate times for Borrelia DNA, the so called “gold standard.” This despite having been in treatment for months. Still, many, even most physicians will tell you that Lyme disease is not chronic and is easily cured with a few weeks’ worth of the right drugs. The whole Lyme disease issue is controversial and deeply politicized. At this point, I would say it is mostly a political football – between the “Yale” school of “there ain’t no such thing as chronic incurable Lyme infection” orthodoxy and the increasingly vocal growing minority of infectious disease specialists who say that there is, and who risk losing medical licenses for treating patients longterm with antibiotics. What runs the risk of getting lost in the controversy is the fact that because no reliable test exists, let alone fully unanimous best practice treatments, there are patients out there who are not being tested and not being treated. I wonder how many are instead being told their neurological symptoms are schizophrenia or bipolar disorder or some other neurological or psychiatric ailment?]

Now, where was I? Ah, yes, I had started out by saying that I believed my symptoms were Lyme-induced. My psychiatrist, Dr O, who is also a sleep specialist treating my narcolepsy, believes moreover that it is lack of a decent night’s sleep, regularly, that has led to this flare-up. She insists that if I do not get a full 8 hours every night, I start decompensating. Then Lyme flares up and between the two everything starts deteriorating. I don’t know what to think, but I do know that I have been skimping on the nighttime medication, taking perhaps only a half of the liquid, so I will go back to taking the full dose religiously at 11pm and 3am, and going to bed at midnight to try to regularize my schedule better. We’ll see what happens.

But precisely what symptoms trouble me at the moment? Mostly hearing things, paranoia, excessive startling at the slightest provocation. All this is especially true when out in public, say in a store or public building. The following is one example: The other day, my father took me grocery shopping at Stop and Shop. From the first step in the door, I was panicked because of people threatening and staring and wanting me out of there. He said, “if people are staring at you, it is because you look so frightened. ” I could not hear him. I was much too fearful to do anything but deal with the situation as I perceived it: People telling me what to do, where to go, what to buy or not to buy, and in general terrorizing me. Every time someone passed me or even just approached from around a corner, I startled, which only upset me further, setting off the tendency to startle again. The whole trip was one of near agony, relieved only by our leaving as soon as possible and getting in the car. Once there, my heart rate immediately slowed and I began at once to calm down. And by the time a half hour had passed at home in my apartment, I was myself again.

That is the sort of thing I am talking about. I can’t say it only happens when I am influenced by the little spirochete bacterium, since grocery shopping is usually difficult for me. But it is not usually such a truly nightmarish experience as it was that day.

Paranoia of the same sort has occurred before and does so more when I am out in public or in the lobby of my building, where people tend to congregate around the mailboxes and community areas, than in my apartment where I am alone and feel relatively safe. So that wasn’t unfamiliar. On the other hand, the excessive startling – the kind my twin sister, a psychiatrist, says resembles an infantile “moro” reflex – is the one symptom I most associate with Lyme, my particular case of neurological Lyme. It alerted me to the fact that any concomitant increase in psychiatric symptoms was also due to the infectious disease. Making this connection has been tremendously helpful to me; it has put everything into a context I can understand and accept, and offers a concrete and simple-to-comprehend explanation for both my schizophrenia and narcolepsy, since the same symptoms are seen in Lyme. Remember the principle of Occam’s razor, which says that if you have a complex and a simple explanation for a phenomenon, the simple one is usually better? The Lyme explanation – ie that Borrelia burgdorferi caused my schizophrenia and my narcolepsy – really makes more sense than the more dubious proposition that I have two relatively unusual diseases and that neither one has yet been deciphered (both schizophrenia and narcolepsy remain mysterious in terms of cause and cure).
Okay, I admit that no one here agrees with me completely, but I much prefer thinking of them this way.
Renaming something can carry real power. Just so, calling my illnesses Lyme makes me feel less victimized than calling myself schizophrenic, however indistinguishable the symptoms are. I might become increasingly paranoid and begin to hear voices, triggering concern in my caregivers that a psychotic episode brews. But if I realize that I am startling at every little thing, acutely dyslexic and subject to sudden rage, and that this means it is a Lyme flare-up, everything falls into place. I become, maybe not less paranoid, but less likely to cling to the delusions once they are pointed out to me as delusions. In addition I might be more able to see how I am misinterpreting the world, at least when someone gives me an alternate and perhaps more reasonable explanation.

I would like to add a word or two about those in Stop and Shop who were staring at me, as my father suggested they might have been. if true, this was stupid and cruel behavior. I myself would never stare at someone who looked frightened. Instead, I would give them lots of space so they wouldn’t feel crammed in and threatened. Many people don’t understand how they might seem threatening to someone who is paranoid. At best they only know that they mean no harm, want only to help and so they have no awareness of the threat that person may perceive in what they do. At worst, they stare and crowd and to a paranoid person this might seem the most dangerous situation of all – to be trapped and threatened and persecuted, even if it is by “persecutors” who have no intent to harm or even frighten.

It seems to me only logical not to exacerbate a person’s obvious fear by staring and crowding, but perhaps I understand this only because I have “been there”. I just don’t get it why people can’t appreciate the obvious: if you crowd or stare at a person who is frightened of everything around her, even if you don’t understand she is paranoid, you threaten her and increase the likelihood of confrontation. Paranoid people don’t mean to hurt anyone, not in the sense of gratuitous injury, but if they attack, they attack — verbally or physically — to defend themselves from what they are convinced beyond shade or shadow of a doubt are threats to their very lives.

So while I can see my father’s point, now, that my frightened mien “caused” people to take interest in me, and “induced” their staring behavior, I think he and others should also take a lesson from what I write here. It is something a lot of people need to understand, including police officers dealing with mentally ill individuals in crisis. Several people or even just one if he or she happens to be the “wrong one”, bearing down on a paranoid, confused and fearful person may play a role in that person’s persecutory delusions. If in a crisis you want to help that person, the best thing you could do, aside from giving the person space and time to calm down if that is possible, is to remain at a reasonable distance, speak softly but clearly, and indicate that you understand the person is frightened. That is the most important thing of all: let them know you know how scared they are. You are not afraid of them, but you know how fearful they are. Do not provoke a confrontation; just make sure they know that you understand where they are. If you can accomplish that, you will be halfway to helping them and resolving the crisis.

With that, I must say good night, TTFN and leave my mark: BD

Poetry

This is just to say…

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No, I haven’t eaten the sweet cold plums that were in the icebox…That was another poet. But I would like to share two of my own with readers, first of all with new readers, and also with any readers returning from schizophrenia.com who happened to be searching for WAGblog and found me here. These poems will be in my upcoming book, We Mad Climb Shaky Ladders: Poems (CavanKerry Pres, Fort Lee, NJ) to be published in February 2009. Short, but I hope effective and not too familiar to people (I don’t recall if I posted both at my old website or not…), the first one is called simply

Poem

You ask me in anger
to write about anger,
the hot flare of it, the cold steel
as we almost come to blows
and each word blisters my fingers
as I take out my wrath
at the typewriter.

Later you are calmer
and in silence do not so much
ask for forgiveness — we both were wrong —
as ask for a poem.

Here it is, love.
Here it is.

The second poem is the one I will open with at any reading, just as it opens my book. I think it is obvious why…

HOW TO READ A POEM: BEGINNER’S MANUAL

First, forget everything you have learned,
that poetry is difficult,
that it cannot be appreciated by the likes of you,
with your high school equivalency diploma,
your steel-tipped boots,
or your white-collar misunderstandings.

Do not assume meanings hidden from you:
the best poems mean what they say and say it.

To read poetry requires only courage
enough to leap from the edge
and trust.

Treat a poem like dirt,
humus rich and heavy from the garden.
Later it will become the fat tomatoes
and golden squash piled high upon your kitchen table.

Poetry demands surrender,
language saying what is true,
doing holy things to the ordinary.

Read just one poem a day.
Someday a book of poems may open in your hands
like a daffodil offering its cup
to the sun.

When you can name five poets
without including Bob Dylan,
when you exceed your quota
and don’t even notice,
close this manual.

Congratulations.
You can now read poetry.

Now, I wrote this blog entry late at night in order to get WAGblog started, but I haven’t done any real designing for it, or even chosen the theme I want. So this will have to do for now. I hope if you are reading this, you have enjoyed my poetry and will want to return. Or that if you are a friend from the old schizophrenia.com Wagblog that you will find the new and to-be-improved Wagblog just as interesting to you and will visit often.

Take care and come back in a few days or maybe a week or so, after I’ve gotten more work done. TTFN BD