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“The Management”

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Schizophrenia and Temporal Lobe Epilepsy: Further Considerations

Because of my having switched from Dr C to Dr B (aka Li) I did not pursue the issue of TLE any further at the time I wrote those blog entries back in April. However, recent comments here have recalled the issue to me, and reawakened my interest in finding out just what is going on — though that may take some time as I am still up in the air about whether or not I will stay with Li or try to find a female psychiatrist after all. Li has been on vacation these past three weeks, so I cannot truly say anything, but I must say that absence has not made me grow any fonder of seeing him! In fact, it has only solidified my distrust and dislike, which was more or less lying low and trying to give him the benefit of the doubt for the time being…Following whagt Dr O urged me to do, that is.

Be that as it may, it just might behoove me to take the proverbial bull by the horns and present Li with these pages, the two TLE posts and see how he reacts, see if he can or will help me pursue the ideas contained in them, objectively, not jumping to conclusions immediately but in a let’s take it slow and wait and see mode..My fear is that either he will jump on one bandwagon or another, not truly thinking about me or about the consequences of his easily accepting either diagnosis.

I was struck again though with several symptoms I have had for a long time, that were emphasized in the “Seized” book by Eva Laplante. First of all, chronic paranoia as a neuropsychiatric presentation, personality changes too, with sudden outrageous impulses (they specifically mention stripping naked and running outside!) and then, strikingly, those signal hyperintensities seen on the brain MRI scan. All this with relatively healthy “inter-episode” status…There, though, I can’t really say, as for years I was NOT healthy between bouts. In fact, I was almost constantly in the hospital, though perhaps even there I had my good times and bad, with the ups being times of good functioning.

One of my commenters, E, mentioned the difficulties he felt he would face “giving up the identity of someone with mental illness.” Yes, indeed. While I have in fact never FELT that I had schizophrenia or mental illness, always mentally resisted accepting that diagnosis, or any but the infectious disease etiology of Lyme disease, I would have trouble dealing with the fact that I could no longer speak for my “siblings in the struggle” of schizophrenia not if officially i did not belong in their “category” any longer! Forget the weird fact that my symptoms so strikingly resembled theirs, and that they felt I told their story! Forget that they all felt I had helped them immensely. It would all go for naught, because I would no longer be credible as “a schizophrenic”. Now personally it is a small price to pay, as I never felt I was schizophrenic to begin with, though I would not like to have my books become something of a farce…But I would indeed feel bad for those I wanted to help with all my writings. Who would I speak for if not them? And I would have lost my community, so to speak!

However, I do not think the issue will be that easily resolved, not unless I have one of those deep EEGs and it is positive…But I doubt it would be, even if I could have one. They don’t do them here, only in New Haven, and even then I am not certain how definitive the results are: if you do not show abnormalities does that completely rule out TLE or only indicate a negative showing at that time? I did have two EEGs separated by years, both time while I was on anticonvulsants, and neither one showed any seizure activity, but I have been told that regular EEGs often do not indicate TLE anyway. So I am not sure how they would determine TLE for certain versus schizophrenia, except by a preponderance of opinions of various docs. Well, so far, not a one has actually diagnosed it or even gone as far as to suggest the diagnosis. All Dr C said was that I had TLE insofar as I had olfactory hallucinations, but he said nothing whatsoever about my schizophrenia…Maybe he would have, but I got paranoid about him and left before I had a chance to find out.

I wanted to go back to that APRN, because I did like her and thought I would be comfortable with her. But I didn’t think she would be up on TLE when I met her, and that was what made me NOT go with her in the first place. Aaah, this is what made me want to see a doc in the first place, and I must remember my goal. I want to find out about this, get it over with, or under my belt or whatever the proper expression is. I want to find out from someone who knows, what the possibilities are…Maybe I ought to start with a neurologist, and skip the psychiatrist altogether? I never thought of that. Perhaps that is the way to go, but the thing is I do not like anyone in the group that dominate the local hospital…And I do not know anywhere else I can see anyone…Nor who would in fact be good. I cannot bear to see someone cold or uncaring, or incompetent! But how to find someone I could both trust to be, well, someone I trust and someone who is bright enough and interested enough to get to the bottom of things?


I found this very interesting article in iGoogle for scholarly articles: http://neuro.psychiatryonline.org/cgi/reprint/9/2/293-a.pdf

If it opens properly it should bring you to an informative article on TLE and psychosis and psychiatric disorders “ictal and non-ictal,” which means, for those of you who don’t know the word, psychiatric disorders seen with the seizure and outside of the seizure.

The Icarus Project and Mad Pride

This is how Newsweek begins its article about the Icarus Project and Mad Pride:

We don’t want to be normal,” Will Hall tells me. The 43-year-old has been diagnosed as schizophrenic, and doctors have prescribed antipsychotic medication for him. But Hall would rather value his mentally extreme states than try to suppress them, so he doesn’t take his meds. Instead, he practices yoga and avoids coffee and sugar. He is delicate and thin, with dark plum polish on his fingernails and black fashion sneakers on his feet, his half Native American ancestry evident in his dark hair and dark eyes. Cultivated and charismatic, he is also unusually energetic, so much so that he seems to be vibrating even when sitting still. http://www.newsweek.com/id/195694

Readers will note two things immediately: It is not common for someone diagnosed with schizophrenia these days to be “delicate and thin” — despite articles claiming to prove a supposed link between schizophrenia the illness and obesity, most of us would say that weight gain went right along with taking meds from the get go. And that most of us were originally either of normal weight or even thin compared to “normals.” the other striking thing, I think, is Will Hall’s level of energy. Most of those with schizophrenia, at least those on meds that I know, have a much lower level than normal of energy and motivation, which again is attributed to the illness itself. Now of course negative symptoms might be an effect of the illness, yes. But I also know that at least when I took the older drugs, like thorazine and mellaril, they added tremendously to any inner listlessness I might have felt. Indeed, what else is the infamous Thorazine shuffle but a drug side effect that practically screams medication-induced psychomotor retardation?

In any event, it may be that some of my readers with schizophrenia, and many of the mothers (and in my experience when caregivers visit this site it is often mothers who do though sometimes fathers do as well) of those with schizophrenia, may well disapprove of my posting this link. But I feel it deserves a viewing. Too many of us suffer the effects of medication without benefiting from its advantages not to offer another form of hope. As long as someone is not a danger to him or herself or others, why should they not be offered the experience of Mad Pride, should they prefer it? In these later stages of my own “condition” I too long to be off meds and to experience my experience, to do art unencumbered by the effect of meds that fatigue me if nothing else. But if I feel enabled now, and emboldened by some inner force to do art, I just might be liberated to unknown heights once off the meds, and if I can control the dangers I used to put myself in vis a vis cigarettes and such, why should i not be permitted such an experiment. Alas, no one here would ever allow it. I would have to endure such remonstrations and scolding and worse from relatives and others it is simply not worth it, or else I simply could not bear the bitterness of fighting with them…SO I am stuck, stuck on these deadening and dangerous medications until such a time as I feel free enough to move away, leave town and move elsewhere. Until such a time as universal health care enables me the freedom to leave the benefits Connecticut so generously provides me as a Medicaid/Medicare patient, and live elsewhere, I am simply forced to live in my same old tiny apartment and change nothing.

But some of you might be wanting to make that change and be more capable of it, be more able to maintain 1) stability and 2) a family support network, rather than a state of constant resentful watchfulness and remonstrations of such bitterness that make it not worth the effort. I know my friends would definitely support me, but I need my family to as well, or feel I do…I am not yet ready to say I can do without it at any rate…And so I remain in thrall to their demands on me, despite the fact that for many years I had no ties to them at all, and neither help nor obligations bound us. If it is good now between us, and I love that part of it, it also means that I feel that I must live up to expectations I could disregard before…and that is so hard, and often such a burden.

Nevertheless, I love them, insofar as I am capable of the emotion of love (see posts below for an explanation of that caveat). And if I am not, then I feel for them as mu9ch as I am capable of feeling for anyone…which is all they can ask.

But I have diverged from my initial subject matter which was Mad Pride. Tomorrow I give a talk and a poetry reading at the House where I live of 250 residents, though only a handful are expected to attend.  IN the talk I finish by answering the question, do I link mental illness and creativity, and my answer is, Maybe, but even so, in most cases the best work, mine at any rate, is done “best when I am better.” I mean by this that deep in psychosis I cannot write anything decent, if I write at all nor do any decent art, because I am no longer motivated nor able to concentrate well enough to do so. Perhaps in a manic state I have been able to, but those have sadly (yes!) been too few. Otherwise my more extreme moods  have been called a mixed state or major depression. In any of those moods, and certainly when extremely or even moderately paranoid, I do little work at all. And when hearing “bad voices” ditto, since that is when I am most likely to be concentrating on acts of self-harm and least on self-nurturing activities such as art. So you see why I say what I do, that only when I am at least getting better do I do my best work?

Moreover, I believe this is true of most people. It seems to me that even in the case of the Mad Pride artwork at the Newsweek site, those artists were not in fact psychotic at the time they did their art, Oh, perhaps they were depressed, but clearly not catatonicly depressed, by definition. And I cannot believe that they were disorganized even if their diagnosis was schizophrenia, because however weird the artwork, there was recognizable order and ordering in each and every one…

Welp, I am getting fatigued just writing this, so I will leave you with that short disquisition and the link to The Icarus Project. I am not endorsing or not- endorsing it, only expressing my interest and indicating my plan to continue to read up and find out more. Somewhat not surprisingly, there is an active ? branch in Northampton,  MA, which is the town I have wanted to move to for a number of years, but have not yet had the nerve. Nor has there been the financial or medical feasibility. Now there might be, but it is still not possible. Oh, I wish I could move, but there is Joe to consider, and I would not leave him now.

That said, here is the Icarus Project Link. Enjoy? Comments will all be read and appreciated. I will respond if I can.


Self Portrait

Self portrait
Self portrait

No one who has seen this has not recognized me, apparently, however simple this portrayal might seem. It was a mere sketch in comparison to the others, I must say. Done late at night, with a hand mirror, with only one decent light, a standing lamp, near enough to illuminate me but clearly casting rather dramatic shadows.

Since then I have been fighting an on-going migraine and so I have not been able or felt up to doing painting of any kind. Cleaned up my apartment under the duress of some visitors coming, but aside from that have gotten nothing of any substance done. I am supposed to be editing my father’s book (the primary author is someone  I’ll call PN but I will refer to it as his book for now, a shorthand for PN and his book) I am supposed to be editing their book but this headache has so laid me low that I have done very little this week. I simply cannot do any difficult mental work when my head is throbbing! At the moment — at the moment I can feel it building back up in the background, though it had been better for a couple of hours (I woke in the middle of the night and stayed up for a while writing this and wandering around trying to shake off my listlessness to do something (I was wide awake otherwise).

Well, no use worrying now. I am yawning so sleep beckons. Must go to bed. TTFN

Portrait painting — what me?

The eyes have it
The eyes have it

I did these the last two nights…Cannot believe I was capable of it, but I somehow managed to paint them. Started with the eyes, and the rest grew around them. THe only practice I had was painting the three eyes beforehand. Weird!

Then, out of the blue I painted these two portraits, with no notion that I had the ability to do so. I simply was filled with the desire to paint them, and so I did!

First Love