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Schizophrenia Screening Test |
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TO A REPEAT OFFENDER
It was never like anything you imagined
from a television familiarity with ERs
ORs and ICUs, never on schedule,
orderly just in the nick of time
but with a touch of humor, comic relief
always ready in the wings. For one thing
there was always too much noise
and damaged bodies gave off fluids
messy, even repulsive, if you didn’t know
what to expect. The four
times you were there you never got used
to the uproar, the loudspeaker,
doctors racing from cubicle to cubicle,
peripatetic police, harried nurses,
all in service to the temple of the body,
its personal soap, the one life to live
you were always so intent on throwing away.
SESQUIPEDALIAN
Webster must have known big words hurt
less than the small venomous yellow jackets
of lesser ones that spoke their minds
and didn’t care who heard,
which is why in “perorate” you find
a synonym for “talk” and “circumlocution”
hides a way to walk around and around
what it is you want to say
so that when the wasps would sting
with his “Go away, Leave me alone!”
and you wish he had chosen to circumnavigate
your feelings, Webster’s Registered Word-nurse
springs to her duty: “Perambulate
from the domicile,” her gentle urge is, offering
aloe to a burn. “He is fugaciously recusant.”
It is not aloe you want, but no burn,
but the stinger is in and must be removed
and so you tweeze and lotion
with words of soft vowels, cushions,
no sharp edges or plosives, comforting yourself.
He comes around by evening, contrite
as you cook, puts his arms
around your trembling shoulders,
his chin in your neck, says the two short words
simple, peacemaking,
that are white moths fluttering
near your anger, taking that risk to say,
I’m sorry.
PHONE CALL AFTER MIDNIGHT
(With thanks to Billy Collins for the first 5 words)
The wires of the night carry soft voices
worried voices, voices thick with tears
that murmur If only... over and over.
They string the continent, connecting
1 am to 4 am souls of the dark night
when telephones ring only terrible news and heartbreak.
The wires of the night whisper I’m sorry, It’s too late,
I’m leaving, She’s dead, through cold dark veins
of neither stars nor blood,
Beantown to Carson City, LA to Disney World.
No pinch or sting changes the stark facts
of the nighttime call, despair or grief--
something over at 3 am is still over in the morning.
The wires of the night are lonely, singing their songs
to sleeping birds, to time rushing east to west,
from then to now, what was before to what is after,
the living and the dead, the wires of the night.
The wires of the night sleep harmlessly,
humming dreams of charmed quarks, strange attractors
until the click of a phone after midnight
wakes them to the worst news
someone doesn’t want to hear.
LOVE IN THE SAHARA...
A New Jersey beach rather, sun,
seaweeds braided with shells flung up
by the dirty ocean and a wedding
under a striped canopy, white and black.
“Love in the Sahara” is the title
of a poem by Mr. B. Collins.
I wonder what he made out of it.
Was his Sahara the real thing? His love?
In my poem a couple marries quickly
because horseflies unexpectedly interrupt
the loveliness and plunge them
into a marriage of more trials and errors
than either of them bargained for.
I do not know yet if I will let it survive.
I myself never married, never had a love
I could call “my love” in Jersey
let alone the Sahara. I’ve loved cats and books,
friends and family, but no love of my life
enraptured by heat and sand, never
never left me high and dry.
Who wants to be a poet? I have a proposal: if someone wants to answer those 6 questions , that is by e-mailing me at pamwagg@cox.net and is willing to go public, I will work with that person by e-mail, and in my blog, to write a poem and show how it can be done. In the end, you will see not that I can write a poem, we already know that, but that in essence, anyone can. Anyone brave enough to take the challenge? I assure you I am NOT at all critical, but very positive and constructive and encouraging when I show someone how to write, so please do not worry about your ego being trampled on. Whoever wants to do it, send me your 6 lines and I'll pick someone if there is more than one response, probably at random since I don't know how else to choose! BD Remember, write about a concrete incident, with colorful details and sensory appeal. Details, details, details! You may not use them all, but you can't start with too many. One sentence per question though, one sentence only, though it can be as long as you like. Now, go ahead and write!
I see something I forgot to mention in my last entry was one of the most important: the use of concrete sensory images. Seek out specific instances, details, color, sensory appeal, anything that can help the reader see, hear, feel, smell or taste the scene better. Poems may be written about abstractions, of course, many are. But those are difficult to pull off and for the novice I recommend that you stick with a specific episode with specific details of what happened or might have happened to play around with. The trick is to turn everything into a physical description, so that even abstractions like good and evil or truth or wisdom etc are converted into concrete physical images in a metaphor or simile. How might one do this? Say a teenager has been caught fibbing and a guilty grin gives him away. "Blushing, he bites the truth off his face and assumes the mien of a chastened churchmouse." But that is just one idea. The point is to SHOW by means of physical description, how a person feels or thinks, rather than by simply using abstract words to tell us.
______________
We went to see Joe's pulmonologist this afternoon. He has been having trouble adapting to his assistive breathing BiPAP machine, for various reasons, and has only used it a few hours each night. I think he exaggerated when he told Dr J that he used it 5 hours last night, because he told me he'd only used it 2.5 hours. But in either case, since he sleeps 12 hours a night, it falls far short of the 3/4 of the night's sleep that Dr J wants him to wear it for. Part of the problem is the mask, which covers his mouth and nose and forces air into his throat through both, drying out his oral cavity distressingly. He gets up to drink several times a night, then because the inrushing air pushes the liquid in his throat down his windpipe, he feels like he is choking...So it's been a no win situation so far.
Dr J then suggested a kind of nose mask called a nasal pillow which is supposed to be more comfortable and allows for both speech and coughing. He gave us a prescription for that and for modafinil, the wakefulness promoting drug used in narcolepsy and sleep apnea, and in the army, for use when he is feeling more than usually fatigued, despite 12 hours sleep.
Afterwards, we went to Dunkies for coffee and smoothies and were sitting there, just resting, when suddenly a wet spot appeared on Joe's shirt. "Uh oh," he murmured, and tugged at his buttons, opening his shirt. His undershirt was pinkish in a large blotch. He pulled it up and we could both see that stuff was being pushed out of the feeding tube. Apparently the top had popped off and now his smoothie was literally going in one end and coming out the middle. I ran for napkins while he closed off the tube. Gingerly he tucked his shirt back in over the now uncovered tube. I offered to drive his car to get us home, and surprisingly he let me, a measure of how uncertain he was and how shaken. Luckily, at the building, hardly anyone was around, and so we got up to his floor with only one other person in the elevator and no one else to deal with, and soon all else was well again. But it was a close call with an embarrassing disaster, and I am certain it won't be the last time, so we'd better get used to it.
This is not a lesson is how to write ANY poem, but a guide to writiing a specific poem, one about someone you like. It is a program I came up with last year to help a friend break a writer's block by setting up a step by step procedure to work one's way to a decent poem. It is NOT how I write, but I would in fact use it to jog myself into writing if I were having difficulty. That said, please feel free to take it or leave it. If it helps, fine, if not, that's fine too. Please feel free to ask questions if I have not fully explained myself!
WRITING PROGRAM
Answer these 6 questions in one ordinary prose sentence each.
1) Choose a person you love, a friend you adore and respect and admire. What attributes do you see more of than her or his faults?
2) What particular quality or trait do you like most in this person? What does he or she do that most endears them to you?
3) a) What reveals this trait, that is how does this trait show itself, by good deeds, fatness, a crooked nose, baggy pants, composting toilet, adopting children etc...how?
b) What does this trait do that you admire it so? What does it accomplish by being what it is?
c) What is the significance or meaning of this trait, to you or to others? You can answer this in any way you choose.
4) How has this trait changed you and/or others? Try for something not obvious, something that takes the reader by surprise, or sums up the rest of the sentences with an AHA!
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Observe the arc or movement of the poem you are writing (Here, it’s broadly, a person I love, what I love about him or her, three aspects of the trait that I love, and the effect it has on me, how it changes me). Answer the 6 questions in any way you want to without editing or caring what it sounds like. EVERYTHING can be changed later.
A) Take those 6 sentences and rewrite them or write others, using the originals as guides, that are fresh and more eloquent to answer the questions but try to keep the same info already provided by the first set of sentences. If you wish, however, info may be added or dropped. Anything and everything written before may be changed. The first words were just placeholders to give you a sense that you had the bones of the piece down.
B) Work on those sentences as prose sentences until they please you and say what you want them to say, more or less, but NOT perfectly. DO not forget the value of metaphors and similes. They are particularly useful in poetry, where indirection is highly valued.
C) Arrange sentences 1 to 6 in order on the page either in a list or paragraph. Now try to break this into a poem form, however you think the poem should be. Remember, the last word in a line is the important word and how it connects to the following first word can be an opportunity for word play, but the last word in a line is NOT always the end of a sentence. The trick is to know where to break the sentence into phrases that are meaningful. Good, when you are done, this is your first draft of a poem. Now GO TO BED. DO NOT WORK ANY FURTHER!
D) When you get up the next day, look at the poem fresh and read it through. Does it make sense? Does it sound good? Is there a “surprise” or a snap at the end, an Aha! moment? If not, it needs work, it will need work in any event, 99.99% of poems do after the first draft, so don’t worry just roll up your sleeves and remember that this is the FUN part. The hard part, getting the poem as an idea onto paper, is done. You’ve got the first draft; you can’t lose your idea, no matter how many times you revise. So this is exciting! Jump right in and start experimenting. I've done 100s of drafts before getting a poem just right.
REWRITING: There is no one way to revise but make sure to look for and X out tired, overused words and phrases, which aren’t always easy to spot, lurking as they do, in "rosy cheeks" and "hothouse orchids" and a "locked and loaded gun" as well as in "crushing dictatorships" and the "filthy rich."
Remember: what is easily written is easily forgotten. If the words come quickly to your pen, they will just as quickly leave another’s brain...so keep that in mind. I’m speaking in general of course as a way to avoid cliches and tired phrases. I don’t mean to disparage inspiration and great flashes of insight, I’ve had many myself and they are blissful, only to suggest that these aren’t reliable in the making of good poems but plain hard work is.
Sometimes one simple word will do the work of three or four. Try finding those places and those words as it will immensely improve your work.
Sense in as important as sound. Make sure that the poem follows some sort of logical arc and ends where you want it to, at that aha! moment. The line breaks -- where the line ends and another begins -- can help add to the suspense in this by providing insight into what might happen in the poem, where it might be going, then it doesn’t (or does). They can do any number of things, adding to irony or humor or drama or wordplay etc
Sound is as important as sense: don't forget your high school lessons of alliteration (consonants constantly cause confusion) and assonance, where the vowel sounds tend to match. Careful use of both can add immeasureably to a poem's sonorousness (wd?) as well as a varied rhythm and (occasional) use of rhyme, both end rhymes and internal rhyme which is less obvious for being "hidden." Try reading your poem out loud many times, in order to see if it sounds as good as it reads on paper. You will often spot an awkward word choice only by reading a poem aloud and noticing it with your tongue.
In my next or another entry, I will try to follow my own instructions and write a poem according to these directions, just to show you what I mean. Cheers, and happy writing. BD
I was reading papers at the website of the Genomas company tonight, owner of LPH or the Laboratory of Personalized Health, which does genetic testing to determine whether individuals are susceptible to certain drugs' side effects.
The science behind this was discussed by Genomas founder and researcher Gualberto Ruano at the NAMI-CT Fourth Annual Conference Joe and I attended on the same Saturday that Lynnie and I were Keynote speakers there, and he was fascinating. Let me see if I can explain in brief what he talked about.
Many drugs, including psychiatric drugs, are metabolized in the liver by what are known as the CYP enzymes. These are proteins that help break down drugs, read by the body as toxic compounds, into detoxified and hopefully useful products. Adverse drug reactions -- ADRs -- often occur because poorly metabolized drugs remain in the body in their toxic forms. The idea behind genetic testing is to determine what kind of drug metabolism a person has: whether one is a ultrarapid metaboliser (needing a very high dose of medication because the drug is broken down so fast and disappears from the system in no time) a normal metabolizer (only 50%), for whom the recommended doze is adequate or a intermediate (40%) or null metabolizer (6%). The null metabolizer in particular cannot detoxify the drug and should not be given it at all. The intermediate metabolizer should be given low doses and carefully monitored for drug interactions and ADRs, which may be anticipated.
How does one tell a good or superfast metabolizer from a poor or null one? Here's where genetics comes in. By means of a blood sample alone, DNA typing allows a patient's metabolic proficiency to be characterized for each drug by using the CYP family of enzymes. The gene that codes for the enzyme is present in two copies in each of us, one copy from our mother and one from our father, and each gene may represent a fully functioning enzyme, a partially functioning one, or a non-functioning one. In each individual there are several different combinations that may result, depending on the contributions of genes from the parents. If, say, one's mother has two functional genes and one's father one null and one deficient, and passes on the deficient gene, the child has one deficient gene and one functioning one...and therefore expresses an enzyme that is somewhat less than fully functional (due to the one copy that is deficient). If a person inherits two null copies, ie two completely dysfunctional genes, one from each parent, he or she cannot express the enzyme or metabolize the drug at all, and it remains toxic for as long as it remains in the body. The ultrarapid metabolizer, 1% of the population, apparently has duplicate copies of the gene, which apparently codes for super-efficient detoxification.
This sort of DNA-typing information is so valuable that the FDA has incorporated it into its prescribing policies where possible, warning that poor metabolizers of certain drugs have elevated plasma levels of a drug compared to the norm and that lab tests are available to identify such poor metabolizers. One day this may be the case for all our medications, and it may no longer be a case of trial and error at least to know which drugs we can or cannot tolerate.
For those who are interested in reading further, you can find more information at http://www.genomas.net
I went over for lunch at LL's last Thursday, to take a very short walk with L so she could get some exercise with her walker and keep building up her leg muscles, lost to myopathy, a result of taking prednisone when she was so ill this past spring and to type up C's weekly Shabbat message to his family, spread out all over the country now. When I got there, I greeted C with a hug (I've learned to do that) and he complained that there was nothing left of me, as usual...Then L said for him to stop bothering me, I'd put on "an ounce or two"...I said nothing, only smiled and plucked my usual Coke (the only one I have all week) out of the fridge. Inside, I was quite shaken.
Why? It was the plan wasn't it? For me to eat more and gain weight, right? Yeah...sort of. Except that Dr O had told me that if I ate 1000 calories I would be "safe" medically and would NOT in fact gain weight, and so I had done so. I hadn't been rigidly counting calories, true, I had simply eaten sensibly and lightly. And in truth, I thought she had been right, too, in that my clothes still seemed to fit the same, more or less. I had no other visual indications that my weight had changed since eating more. I didn't weigh myself, though, because I didn't want to become a slave of the scale. Still, I was happy enough to stay where I was, eating as I was...Until The Comment. That "an ounce or two" meant to me "four or five pounds" because obviously it would take that much to be noticeable, wouldn't it? At least 2-3 lbs! And that upset me, since I had been laboring under the illusion that I was not actually gaining weight, as Dr O assured me I wouldn't.
Needless to say, I resolved then and there to lose the weight immediately. I ate very little therest of that day. And planned to fast or eat extremely little for the next two weeks to make up for my "over-indulgence" of the past month. Then the next morning I decided just to weigh myself (without clothes for a change) to see the damage. I was astounded to see I weighed 94.5lbs, NOT the 103-5lbs as I'd anticipated. Why had L so blithely said I'd gained weight? Had she any idea what her comment had meant to me? The damage it did? Why did she have to comment on my size or weight at all? Why do people say things like that? I wouldn't dream of commenting on someone's weight, especially not to say they had gained weight, especially not someone who had a history of an eating disorder...I don't get it...
But it brought it all right back home to roost: the concerns about food, the putting off eating and forgetting to do so until late at night, because it is so conflicted; sometimes I don't get down more than a banana or two all day until midnight, when I scramble to get some calories in.
I hate this. I hate going on and on about food and eating, when there are so many more important things to worry about and think about and talk about! In fact, I'm not going to say another word about it. I'm going to stop right here.
Is there a connection between schizophrenia and creativity? Between madness and art? Between my illness and my poetry? The jury is out on the first two, though there is certainly a great deal of anecdotal evidence suggesting a link and it may be that one will be found. But creativity is such a huge arena that it is safe to say that it is not wholly the province of the mad in any event, so that so to say there is a link may be little more than to say being human is also linked to madness. In short, I am wary of the value of making such claims, of what good can come of them. Surely there is as much creativity linked to health as to illness after all!
But on a personal level, I can discuss the third question: Is there a connection between my schizophrenia and my poetry, or better, how does my illness influence my poems, if it does? I started writing poetry in 1984 and by 1985 was writing hundreds of poems a year. While I stopped obsessively dating everything after around 1987 I know that I wrote as often as I could, sometimes daily, for many years, though with long lacunae for hospitalizations. I had high points and low, times when I couldn't stop writing and times when I couldn't write at all. I wrote poetry almost exclusively until 1992, when I started a novel, which I wrote 400 pp of in 3 weeks. Then I returned to poetry, and went on writing. I wrote some book reviews, and earned some money for them to boot, but kept up with the poems. And I started my memoir, a work that would take me some 12 years. But always there was the poetry, though in the later 90s and early 2000s my output slowed to a trickle compared to what it had been at its peak, though the quality seemed to be high, according to my readers.
But what was striking -- what probably strikes all poets when they look back over the decades of their development as writers -- was the change in my style as a poet. It wasn't that I simply got better and better, more proficient as a wordsmith, no, not that at all. In fact, I'm not convinced that I did get better. I didn't get worse. I changed, I changed completely. It is as if one can trace the progression of my illness and with it the medications and changes in meds throughout the years as they transformed my writing. The poems from 1985 are not a beginner's poems at all; they are, to my ear now, quite sophisticated, lovely and fresh, and in fact I think they are better, more creative and free than anything I've written since. I'm envious of that ability, having lost it completely to the past. Take this first part of a 3-part poem for a good example of what I was writing:
THREE POEMS FOR A NEW YEAR
1
The Poet
The year’s done in, a dog, tail between its legs,
And I am Circe, immobilized by moly.
My spell casts no magic, my light no glow.
I am all shadows, wormy as an Eskimo’s blubber.
It is cold here, the hole has closed up, no air,
Shutting its sleep-lids tight as a jar.
Bleak light seeps to me through a broken mirror
Of my own nothingness and sheer bad luck.
Bring an end to it then! Call in the purple
Architects, the landscape artists, the passionate poets.
They will build you a red castle of gingerbread
and curlicues, yews and bold, bold words, the old romance.
You don’t need this maggoty old shawl of tears,
Hopelessness empty as a cup. Wake up!
It’s certain as January you’ll find your own voice.
And look here, the dog bleats for new bones.
"Maggoty old shawl of tears"? A dog that "bleats for new bones"? Wow! I'm sorry but it takes a new eye, an untired ear to write words like that; it takes a certain looseness and willingness to accept weird connections and linkages that others might reject as too outlandish to write a poem like that...and I think it is a marvelous poem, frankly. (I say this, not quite believing I wrote it.) You say, a dog doesn't bleat? I say only unimaginative people can't hear dogs bleating or think that only sheep can bleat...But the looseness I'm talking about is also a symptom of schizophrenia, a familiarity with a confusion of senses and sensory experiences; a verbalizing of that confusion. Everything sounds like it makes sense...is on the edge of making sense, but does it? Does it quite? I know I thought so when I wrote the poem, but I'm not sure I can decipher it now. Can you? In any event, I still think the poetry of the poem is fantastic and will grant it the right to be "evocative" without making perfect logical sense.
Another "phase" or medication regimen had me writing poems that were more logical, in that they did make "sense" but were for all that just as hard to understand, because of their language. Take this one:
MORTAL CHOICES
Off the corridor plumed with oxygen
the blue incandescent symmetry of your tiger
burns blue behind every door,
consumes and is consumed
in pyrotechnics cold as starlight.
Hope, guttering like spent Christmas,
in votive lights it candles visible death:
the mirror measures each breath,
telegraphing the code.
Your Morse is all dots now, brief impossibilities
that punctuate the smallness of what’s left:
a perfect absolution, the crime
wounding your Biblical angel
on the banks of the river, flames,
those last lives
devouring the bridge to any other shore,
the last sufficient silos of breath
begging the grail of your life...
Here, then, is that chalice, beautiful and terrifying
that overflows and is refilled endlessly.
Ambivalent, you drain it in isolation
the stupefying liquid fire,
its beatitude scarring you, marking you
even as the Logos descends on bitter wings
and death wakens to its task:
your perfection, cold and final as snow.
I think the medication was not working too well here, because as I read it, I know the code, so I understand some of the references and what I was talking about, but here I am not communicating it to anyone else...Unless I don't care to. Unless it doesn't matter. Once again, the style may be the point, not communication but language as beauty, as art. My medication had not yet made communication of an idea as important to me then as it is now, clearly. But once again, the style depended on the medication, Prolixin, this time probably, instead of Thorazine/Mellaril or nothing.
My illness, apart from the medication issue, probably took more from me than it gave. It may have given me poetry, yes, for which I am eternally grateful, but would I have traded my entire life, and taken all the suffering I've been through in order to have poetry, and still have schizophrenia to boot? If I had been given the choice at the outset? I doubt it. Now, of course, now I can say having the ability to write poetry is wonderful, it is a blessing, but it's an "extra" that most people with this horrible illness do not get to have at all, so I am LUCKY to have it; it is not something that we ALL get just because we are somehow blessed with this illness! That's the problem with finding some sort of "link" to art: if people see there is something positive to schizophrenia, they will stop trying to find a cure and will want to teach people to accept and live with it, and they will not understand the horrendous suffering we go through that NO ONE should have to go through, not even for the sake of art, and certainly not for the sake of some tenuous "link" to art.
So while my illness definitely affects me and my poetry, as an individual who writes for her life, I don't know that schizophrenia has anything intimately to do with creativity in general that is worthwhile saying or studying. I think the two are best left apart and studied separately. It seems to me to serve no purpose to link them, or to find evidence in great artists that they had SZ and therefore that SZ has a reputable history etc. SZ is an illness and those with SZ are unfortunate victims...If they create great art or do great things, it is in spite of this illness, not because of it, and the schizophrenia they have or had should NOT be glorified. It serves no purpose and does no one any good deed to glamorize a psychiatric disease that in the end has mostly ruined untold countless lives and added little of value to any.
My father visited again yesterday. He brought fruit and peanut brittle, which he always brings to help me gain weight but no longer forces it on me. We talked about a lot of things but when we got onto the subject of death and dying, he said that at his age death was no longer frightening, that one knew death was a possibility at any time and was aware of one’s mortality. Reaching, I think, for a lighter note, he observed that when you have more doctor’s appointments than friends' visits, and more doctors than friends, you know the time is coming when you will be reaching the end.
At some point in this discussion, I started crying, as I quite literally always do in a discussion of people dying, whether it be those close to me or someone I do not even know. More on that later but for now the important thing is that my father worried about upsetting me and tried to change the subject, to cheer me up again. But I was not upset for me. I was upset because I didn’t want him, or anyone else, to be afraid of dying; I don’t want anyone to die in fear and panic. He still worried that he’d initiated a topic that was “bad” for me. I tried to explain that tears aren’t bad for me, they don’t mean that I feel bad about myself, only that I feel bad on behalf on others, in this case lest they are fearful of that final minute when it all goes blank...Of course, some believe it does not all go blank, which is a blessing I think. But I do, and in some measure, I suspect many, even those who claim to believe in an afterlife, fear it too, or they wouldn’t cling so to life and fear dying -- fear cancer, auto crashes, murderers, sky diving -- not if they truly were assured of a life after death.
Be that as it may, the question arises of why it matters so much to me that people not be so scared to die. I don’t know. But we enter the world unafraid, or unaware that we are afraid and unable to call upon memories to tell us “fear this experience!” and I want us to enter death with the same and equal innocence, i.e. without memories (since we have none of the only like experience, that of before birth). Alas, death is the Great Unknown and we do have memories of experiencing the unknown before, of the unknown becoming known as unpleasant, even awful, and so we are able to anticipate the big Unknown of death as a possible Awful Surprise (ie Hell), and why not? No one ever comes back to tell us otherwise. Or those that claim to, go on living and so were only dubiously “dead” to begin with. (The similarity of their stories, however, is striking enough to me to suggest a kind of universal mechanism to the way in which the brain processes its last moments of consciousness, a wonderful instance of evolutionary “kindness.”)
But why does the fear of others at their deaths matter to me, especially if I can’t change it? Is it simply vicarious suffering? Or excess of empathy? Or a too intimate identification with those who are dying? Why does it matter, and every time I think about it or hear about it or am told about someone dying?
I truly do not understand, one, why it shouldn‘t matter to me. Why should I NOT care if a person I hear about is facing death with abject terror? By contrast I know I should care if a whole society courts death and greedily seeks it out, taking as many others with them as possible in as high a degree of fear as possible? That to me is the most repulsive and despicable perversion of a gentle gracious acceptance of the end of one’s god-given life (in whatever sense you want to read “god-given”): to aggressively bring death on not just your own head but that of 10s or 100s or 1000s of innocents around you who do not want to die. I do not know how to punish someone like that, except with solitary confinement (and I do not mean in an otherwise crowded cell block) with LIFE in prison, deprived of reading matter pertaining to that death-dealing philosophy. But that is my anger talking; what I propose is torture and I abhor torture, so as I said, I do not know how to punish someone like that...
Getting back to my subject, though, of those who, instead of courting death** and killing others, fear it: I do care tremendously if a person is ill or condemned and facing death in fear. I want to give them my hand, yes, physically, and sit with them and talk with them until they have found their way to peace and an acceptance of dying that will take them through the final moments in ease and with serenity. Even the condemned prisoner, guilty or all too possibly innocent, both of whom I personally believe are being murdered by a state that has no business doing so, perhaps the condemned most of all, needs to come to some peaceful place in himself and accept death and NOT fear it, even at the unnatural hands of his executioners. I don’t know how one does that. I don’t know how a healthy, relatively young man (overwhelmingly likely to be male) goes to his deliberate extermination in peace, but it can be and has been done, at least from what I’ve read of Sister Prejean (is that her name? It doesn’t look right, and memory definitely does not serve...so correct me someone if I have it wrong!) It ought NEVER have to be done, mind you, ever, anywhere, most certainly not in a country like ours that calls itself advanced and civilized (hah!). But I remain convinced that it can be.
**I leave quite apart the questions of depression and suicide, which are utterly different
But I still haven’t answered my own Q. Why does this matter so to me as an individual? I can’t do anything about the condemned, me, myself, either in a small way or a big way, except write about it in my notebook or blog, or talk about it with friends, maybe bring it to the attention of a coupla dozen people in the end. The reality of schizophrenia constrains me, let’s face it. All I can do for the dying is what I can do for Joe and people I know, which is probably all I need to do at this point. But who was it that wrote: “Any man’s death diminishes me”? Its grandiloquence sounds like Walt Whitman but my memory gave out of me long ago so I won’t even venture a guess. It could be a lot older, one of the more theological poets who said it. (BULLETIN: This just in from MLBV who announced that it is from John Donne, my second choice, in his "No Man Is An Island" poem.) But it is, in any event, how I feel: that if any one person fears death, has not been able to find peace before dying or peace about dying itself, that fear, the fact of that fear diminishes me. It actively causes me visceral pain and brings tears to my eyes as I contemplate the pain that such fear caused one person’s dying. I detest anyone’s suffering pain. Physical pain is one thing, but psychic pain, the pain caused by fear (most fundamental and therefore worst) or sadness and loss (second worst because secondary – you can fear loss or sadness) is the pain I’m talking about. Psychic pain of all sorts is the kind of pain that drives a person to suicide, not physical pain. I think most of you at this website would agree that PSYCHIC PAIN is the WORST PAIN there is. I know, I know, you can’t compare pain...But I’m saying only that the mind’s pain is more unendurable than pain that is felt only as bodily pain, because it truly is a matter of mind over body and the mind can control how it experiences bodily pain, but not psychic terrors, by very definition. Therefore, fear of death may well be the most fundamental, most basic, and worst fear there is, though ignored for all that for being so universal. What is the worst thing in the end that can happen to a person? Well, really only one thing: death, nothing else! And what is the worst psychic pain? Fear. So, Fear of death is the worst pain and the worst consequence. Now my preoccupation no longer seems so trivial does it? I’m concerned with the single most critical and universal question of our existence.
In a nutshell then, we live with the worst psychic pain humankind can imagine (Ultimate fear) along with the knowledge of the worst but most inevitable natural consequence of living (Death). My burning concern is that people not die still tortured by this fear but that during their lives they come to some place of peace and acceptance. My tears are for those who cannot, and so die frightened, and by definition alone in their fear.
I think everyone knows my forgiveness poem, but I want to reprint it here, being relevant to my night's discussion:
To Forgive Is...
To begin
and there is so much to forgive:
for one, your parents, one and two,
out of whose dim haphazard coupling
you sprang forth roaring, indignantly alive.
For this, whatever else followed,
innocent and guilty, forgive them.
If it is day, forgive the sun
its white radiance blinding the eye;
forgive also the moon for dragging the tides,
for her secrets, her half heart of darkness;
whatever the season, forgive it its various
assaults -- floods, gales, storms
of ice -- and forgive its changing;
for its vanishing act, stealing what you love
and what you hate, indifferent,
forgive time; and likewise forgive its fickle
consort, memory, which fades
the photographs of all you can’t remember;
forgive forgetting, which is chaste
and kinder than you know;
forgive your age and the age you were
when happiness was afire in your blood
and joy sang hymns in the trees;
forgive, too, those trees, which have died;
and forgive death for taking them,
inexorable as God; then forgive God
His terrible grandeur, His unspeakable
Name; forgive, too, the poor devil
for a celestial fall no worse than your own.
When you have forgiven whatever is of earth,
of sky, of water, whatever is named,
whatever remains nameless,
forgive, finally, your own sorry self,
clothed in temporary flesh,
the breath and blood of you
already dying.
Dying, forgiven, now you begin.
I'd like to write a little here about how I've incorporated the notion of forgiveness and other values into my life in both healthy and not so healthy ways.
Forgiveness: Christians believe two fundamental things in this regard, the second following from the first, though both honored most often in the breach (which despite popular misunderstanding of the phrase means that they are most often NOT honored). One, that Jesus's death on the cross brought salvation/forgiveness to the world (or to "Christians", or to all who believe in Him...depending on what church or what Bible or what pastor you listen to) and two, each individual must love and forgive her enemies as she herself is loved and forgiven by God. I do not know for certain what Jews believe in terms of forgiveness, though my father, a Jew, tells me that only the sinned against have the right to forgive the sinner, no one else, the implication being that not even God is permitted this right. Only the victims of the Holocaust could forgive Hitler and the Nazis, and so forgiveness in that regard is largely impossible.
With respect to this "virtue" in the old-fashioned sense of the word, I bought into the second belief, that one must forgive ones enemies and those who have sinned against one (not that I have a choice, as in Judaism, but an injunction, as in Christianity) without allowing myself the luxury of the first: that of having been completely loved and forgiven beforehand. No, I forgive others easily, so easily that I almost don't allow myself to feel any anger at all before I automatically grant them respite. But the notion that I might myself be forgiven, by God? By others? By myself? NEVER! Heaven forfend. Impossible even to think of it, because I am unforgiveable, the only unremoveable blotch on humanity that stains forever. I don't know why this is, why I am unforgiveable. I know no one else is. Am I special? Am I so special as to deserve different treatment? Ah, the verbal tricks used to get me to grant that I am "just like one of you." Make me feel I am being accused of arrogance, horror of horrors, and I'll be sure to back down and grant that I am forgiveable as anyone. But I am not. If it is arrogance to say that I AM different in that regard, that I am Cain (not in the sense of being under God's protection but as the First Murderer) to everyone else's manslaughter (BTW I killed a squirrel under the wheels of my car yesterday...almost fainted right then and there...I KILLED IT!) well, then, I guess I am arrogant, but it is only because you forced the issue. I am NOT special, if truth be told. I am simply condemned to be Satan, or Satan's spawn, which will become Satan eventually.
Oh dear, I am getting drawn down the wrong path. Got to steer away from this and go back to what I was talking about...Let's leave forgiveness then, too messy a subject, and obviously too dangerous.
Kindness and truth are important values to me. Cy is always asking the question: which is more important: kindness or truth? And my response is always, Need they be mutually exclusive? But sometimes, of course, they are. And sometimes, it is essential that one lie through one's teeth. Case in point is that same Holocaust and the Gentile family that is hiding the Jews in their cellar when the Nazis come a calling...What do they do, tell the truth, Yes, and by the way, we're hiding a couple a dozen Jews in our cellar? Of course not! That is one lie that is blessed in heaven and loved on earth by all who revere truth and kindness. It is more difficult to think of times when Kindness is not called for, but I suppose the 9/11 hijackers needed something other than kindness well before they were ready to pull out their box cutters, since it is clear that kindness would not have stopped them in their "holy" mission. Too many people are allied with justice over mercy, with absolute equality of treatment over kindness; "You get your half; I get mine", rather than, "I have a little already, why don't you take the rest?" Which I find despicable. The rigid 15% tip because it is the Rule, instead of the occasional 30% tip "because waitresses work hard and need the income and I can spare..."
One last word about body and spirit: Christianity has long had a troubled relationship with the body and therefore values chastity whereas Judaism, which places a healthy premium on life and loving and families, is much less troubled by bodily hang-ups. Freud had to be a Jew or the Jews would have had to invent him simply to explain the Christians to them! But I am a product of Christian body-consciousness (and in their troubled relationship with the flesh, they are no less fixated on it) and suffer from all their strictures imposed upon the free use thereof. But schizophrenia has imposed its own limitations as well, so that physical contact feels intrusive and violating of my private space and body, an intimate trespass that threatens me with extinction. No wonder I avoid sex...No wonder I avoid, or want to, the chastest hugs. Even walking is painful to me, in the sense that I feel people thinking about me, watchng me, commenting on me and my arms not swinging naturally. And yet, I don't worry about my spirit or soul overly. I don't feel concerned about what happens when I die or whether "I", some essence of me, will continue or not. I don't think I will.. I think I will be food for worms and bacteria, and that "I" will be no more, that my essence will be nullified at death and it will feel like I am going to sleep forever, a scary prospect right now, but hopefully when the time comes, something I will welcome.
If I speak of soul right now, of essence, I mean only that energy I project from the living me that emanates outward and influences people, places and things. Not anything eternal and lasting forever. My "soul" to me is like a bubble of high energy particles that billows off me and is blown throughout the world to affect things elsewhere, in that fashioin causing effects that make me responsible for all the sorts of events that people tell me I cannot be responsible for. But that is how my soul operates, not in any religious sense.
I realize this hasn't been the most articulate of entries and that I have digressed several times. Sorry about that. And sorry for not writing for three days but I had to take a break to finish putting together my poetry manuscript. Now that I have one, I have to find places to send it, and get copies made and actually send it, which is the hardest part of all!
Joe and Kay went up to the Clinic yesterday. I wanted to go with them, and take the bus back home tonight (I couldn't stay over, due to a speaking engagement on Tuesday and Wednesday) but when I ran the idea past Kay, she said she would call around to see about bus schedules then immediately ran to Joe to complain! Joe called me to tell me it couldn't be done, they'd already loooked into it. I don't know what her problem is...If she knew it would be impossible for me to travel by bus, she ought to have said so, but to go to Joe and tell him to tell me not to come is pretty low down, especially when Joe actually would have liked me to come along, had it not been for Kay's objections.
IN any event, they left yesterday and stayed overnight at the Marriott next door to the hospital, where Joe checked in this morning, thinking they would put the PEG in today. Instead all they did was pass an NG tube down his nose and into his stomach in preparation for his swallowing barium tomorrow, when the PEG operation will actually be done, under local anesthesia and a light sedative, not general, which is too dangerous given Joe's respiratory status. In a sense it isn't a PEG after all, since the endoscope will not be used to place the feeding tube. But since the result is the same, and the tube placed is the same, I guess they still call it a PEG.
Although Joe will probably be discharged from the CLinic hospital tomorrow afternoon, he and Kay will stay over at the Marriott one more night just to watch for any signs of infection or adverse reactions, before starting home on Wednesday. If all goes well, we should all be returning to Connecticut around the same time.
I'd like to reprint Lynnie's new speech here. (mine was largely copied from a previous entry about Insight) as it got a standing ovation and she delivered it incredibly well (Sue M: Try not to read this entry either until we decide which program we are doing, unless you won't be disappointed to know the speech beforehand.)
Pammy’s talk about gaining insight into the nature of
her paranoia led me to some insight of my own. But I
need to tell you first about my nose. (pause) OK,
really, my sense of smell. In college, my nose could
tell if my date had had too much to drink before he
got behind the wheel. And no peppermint gum hid
cigarette breath or pot smoking from me.
The downside – one sniff of garlic or raw onion from
lunch wrecked a good-night kiss. And, in medical
school, more than the pressures, the loss of sleep, I
hated the smells, the reek of formalin.
There are many positives of course... Most recently,
my fiance’ discovered he can choose colognes designed
to drive me wild...
Sal, from Italy, knows that my sensitivity to other
“aromas” is also exquisitely fine-tuned. One night
when we were still in the early stages of romance he
came over and I, expecting a kiss, threw out my arms
and closed my eyes. There was a rustling of plastic.
“Open up.”
I opened my eyes. There was a spoon laden with tomato
sauce. My nose recognized instantly: garlic.
“Not your eyes, silly, your mouth.” He grinned but
averted his head slightly. “You have to eat this now
or you won’t talk to me for days, let alone kiss me.
It’s my mother’s [pause] and it was lunch.”
Needless to say, I opened my mouth.
So when Sal sat me down the other day and said,
“There’s something wrong, You can’t smell anymore.” I
almost laughed. But he pointed out that he’d gone
through two bottles of my favorite cologne and I
hadn’t noticed. And what about the rotten egg the
other day? Also, just that night I hadn’t smelled the
food burning. Everything he said was true. But until
he pointed it out, I didn’t know any of it.
I tell you this story because it helped me understand
in a small way Pammy’s experience. When I didn’t smell
odor of burning food, I didn’t know to turn the heat
down; when Pammy doesn’t know the voices she hears are
hallucinations, she is unaware that she is unable to
distinguish the real from the unreal. So hearing
accusatory voices yelling at her of course she’s
guarded, apprehensive, even angry! Who wouldn’t be?
I started writing this speech after I’d just returned
from the hospital after handing her over to the
emergency room for yet another in a lifetime of
admissions for chronic schizophrenia.
When you’re the sibling or the parent, the child, the
spouse or the friend of someone with Sz, you may not
have the illness yourself, but it’s like living with a
cigarette smoker; you don’t light up, but you’re
breathing “second-hand smoke.” When she’s paranoid
and it’s aimed at me it still hurts. As Pam’s sister,
I don’t hear voices or hallucinations or live with the
discomfort of medication side effects, but I get
plenty of the consequences when she decides to stop
taking medications.
For years I’d try to help her, talk her into taking
the pills. When she was upset I’d try to calm her down
or let her cry it out, give her advice about what to
do, and whom to trust and what to ask her doctor.
She’d do as she pleased. All I could do was watch.
Many times I’ve realized Pammy was getting sick again
because I was “getting it in the neck,” being accused
of things that weren’t true.
In 2004 at the end of a series of psychiatric
hospitalizations, Pammy set her leg on fire + needed
skin grafts for third degree burns. But until July
2006 she’d been doing so well, I’d started to hope the
worst was behind us. Then the news that our father had
cancer sent her into a tailspin. Background voices
exploded into violent command hallucinations and she
spent the night once again looking for flammable
liquids and lighters. She was admitted to the hospital
the next day.
Schizophrenia invaded our lives over 30 years ago when
Pammy’s early symptoms began. The devastation it
wrought in her life is the main focus of our book,
Divided Minds, Twin Sisters and Their Journey Through
Sz. For years, at first no one spoke about it, and SZ
silently divided our family. There was no NAMI back
then. When we did talk about Pammy it wasn’t about her
brain illness.
In the last 27 years NAMI has made remarkable
progress in educating the public, promoting research
and eradicating stigma. Today we can say without
hesitation that Sz is a brain disease; schizophrenia
is no one’s fault. These days we speak out in public
about Sz and recovery.
But sometimes I think we two make recovery seem too
easy.
It’s not easy. We’ve had to deal with Sz for over 30
yrs. For too long, I tried to deal with Pammy’s
illness alone, shielding my family from most
disturbances, inconvenience, and care. Slowly this is
changing.
Schizophrenia is no long a taboo subject in our
family. Sz is a fact of all of our lives. It may not
be fun, but the more you know, the easier it becomes.
Schizophrenia has the power to destroy brain tissue
yes, and with it much cognitive and other functioning.
But schizophrenia’s power to destroy a person, a
relationship, a family, is only as great as we allow
it to be.
Pam’s journey, my journey, our journey, is shared by
every one of you, ill or well, whether the disease is
schizophrenia or Alzheimer’s disease, depression or
Parkinson’s. Our journeys differ only in the details.
We’ve all been through the highs when we think, “This
is it. This time we’ve got it beat. No more relapses.”
We all recognize the gut wrenching free-fall of the 3
AM phone call, the sleepless nights, the fists into
the pillows or walls, or dashboards. The missed school
conferences and games, the angry calls from the coach
or sitter who had to take up the slack one more time
and doesn’t understand your depression or your
depressed kid or brother or wife.
And every single one of us has known discouragement,
frustration, rage, and that black wall of despair, and
finally each one of us can remember deep inside just
how close we have come to giving up …maybe more than
once…
But all glimmers of hope are hope, just as all
drops of water are water. Hope, dreams, and billions
in pharmacologic research have brought us out of the
dark ages of blaming mothers for causing schizophrenia
and the back wards for chronic mental illness. It’s
only because of hope and dreams that pharmacologic
research has brought a sea change to the treatment of
neuro-psychiatric disorders.
Where once there was despair there is now hope and a
door to a full normal life. Pammy has changed in the
last year, and so have I. Learning from each other,
mistakes and all, we have made the small gains that
add up in life. Finally, I have my sister back. I can
rely on Pammy once again as my confidant, my best girl
friend and she’s the best writing teacher and editor
I’ve ever had! In spite of Sz she brings much light to
my world. And Sal, who came so unexpectedly into my
life two years ago, has enabled me to let down
emotional walls I once thought permanent. After
decades of making myself a self reliant, decisive, and
(I thought) totally independent adult, I discover the
blessings of asking for and receiving help. For this I
rejoice.
Remember, not one of us can make this journey alone.
I’ve been reading some things recently by Benedictine
Sister Joan Chittister. In one of her books I came
across this quote from Albert Schweitzer, “Sometimes
our light goes out, but it is blown again into flame
by an encounter with another human being. Each of us
owes a debt of gratitude to those who have rekindled
the light.”
To Pammy and to Sal I owe that debt. Thank you both.
NAMI has rekindled the light many times for all of us.
Thank you!
I think it was Kate who asked me to show how I write a poem from beginning to end. Since I keep my rough drafts stapled in the order in which I write them to the page of my poetry notebook where I wrote the first draft longhand, I can do this with a poem already written rather than writing a brand new poem, which might put more pressure on me than would be good for me right now. Forthwith, you remember the poem CLASSIC, which I put up recently?
CLASSIC
Homemaker turned friend, on a Saturday
Mid-spring, sprang me from my apartment
And we were off to the flea for the bargains.
Jo headed for the “new stuff,” all oil-based
Fabrics in cut-rate, designer knock-offs
While I cast my eyes over what had aged
Into sepia, rounded or paintless with love and use,
Hoping for antiques on sale by the unwitting, fair
For not knowing priceless from worthless myself
Except in the matter of three women’s sweaters,
New --tags still on -- in navy, ash and sand
Under a sign that read: CLASSIC CASHMERE $5.
Why cashmere sweaters at that price
Still unsold if there wasn’t a mortal catch?
Was made in the 1950s in 2006 too mortal for me?
Well, were there holes? were they coming apart
At the seams? was the style dowdy or old-fashioned?
Taking last first, he pattered: Classic
Means classic; you could wear these any year
And never look out of place. Test them yourself. Pull
At them. They won’t even stretch, those seams.
And no holes. Okay, you found a tiny one
In the sand-colored arm? It can be repaired.
You see, pristine condition, almost. And only $5 each.
I tell you, it offended me how flea-goers shunned
1950s cashmere, so valued and precious
When new a sweater might cost hundreds of dollars
Yet 50 years old, like many of us, in almost
But not quite, pristine condition, no one wanted
Those gals, not even at flea market prices.
I fell for the sweaters, bought all of them --
Navy and ash pullovers, the sand-colored cardigan
And brought them home. Now that we survived
The steams and storms of peach season, it’s all apples
Finally. I need a sweater mornings, comfort
in cashmere, 50-something, same as I, a classic.
----------------------------------------------------------------------
Well, the very first rough draft the handwritten one went like this:
Homemaker turned friend, on a Saturday
mid-spring, springs me from/out of my apartment
and we're off to the flea for the bargains.
Josephine heads for the new stuff
cut-rate discount dirt cheap mostly oil-based
I cast my eye over what's old/ aged
(into sepia, comfortable edges rounded with use) hoping
for antiques on sale by the unwitting
not knowing priceless from worthless myself
except in the matter of three womens sweaters
my size, tags still on, in bluer, gray and beige
and the sign said CLASSIC CASHMERE $5 EACH.
Why were cashmere sweaters at that price
still unsold if there werent a mortal catch?
Was made in the 1950s in 2006 too mortal for me?
Were there holes? Was the wool deteriorating?
Was it fraying or coming apart at the seams?
No, no and no, I checked myself. One tiny hole, easily repaired
in the beige arm. Now I must tell you it offended me
how people ran from the 1950's cashmere,
so valued and precious when new a sweater
is worth hundreds of dollars sometimes
but 50 years old and in almost pristine condition
no one wanted those gals, not even at Walmart prices.
Are we, then we 50-somethings valoued as little as those
once-prized cashmeres, called classics but ignored
as past out prime, esp women? I bought all
three sweaters. It's September now and already
I wear them, my priceless $5 cashmeres.
The first thing that strikes me about this first draft, this idea dashed onto paper without any attempt to shape it or edit it just getting the gist of it down, is that it is serious. It lacks the playful quality of the final version. It will be interesting to see when that first appears. But you can see that I do not write perfect first drafts by any means. I scribble and cross out and write like mad to "catch" a poem, but what I catch is an idea, very basic and unshaped, not the poem entire. I might get a beginning and end "from the air," but have to fill in the middle, or a couple of good lines in between but have to do the rest by "myself." As you can see, even what I get is very "first drafty" and unpolished as I am expected to do a lot of work to get it into shape. So let's look at the next draft that I kept and see what changes I made and why.
Homemaker turned friend, on a Saturday
midspring, sprang me from my apartment
and we're off to the flea for the bargains.
Jo headed for the "new stuff" all oil-based
cut-rate, discount, designer knock-offs
while I cast my eye over what had aged itself
into sepia,ropunded or paintless with love or use,
hoping for antiques on sale by the unwitting, fair game
for not knowing priceless from worthless myself
except in the matter of three women's sweaters
my size, tags still on, in navy, ash, and sand
under a sign that read: CLASSIC CASHMERE $5.
Now let's look at the two versions of this first part. THe first three lines are more or less the same, though I have chosen to go with the past tense. I notice I have taken out "dirt cheap" and added the "designer knock-offs" The first is an improvement, though not yet enough of one as cut-rate and discount still have to be dealt with, all three expressions saying the same thing. Using the word "Oil-based" instead of "plastic" or "synthetic" gives the "new stuff" by association the smell and feel of gasoline or motor oil and is meant to make it seem disagreeable. Aging something into sepia, for which most people have a fondness, elicits good feelings, as well as memories of something paintless with "love or use". You see how I'm getting you on the narrator's side? THe colors of the sweaters have been changed too, to fresher words, though I'm not to sure about this as it makes them sound like a fashioin catalogue...I yet may change them back! Finally, the sign is missing the "each" which tightens the line and adds to the impact of the $5, which is weakened by anything following it.
Now let's see what the next draft of the second part of the poem does.
THe second part in the third kept draft (there were several mini-drafts in-between) has seen many changes already. Now there is an attempt at humor, with the salesman doing his selling routine to someone he thinks is going to haggle. This time the "each" is kept because he is emphasizing that she, the narrator (who by the way is never to be thought of as the poet, since often he or she is not) must pay $15 for the three.
Why cashmere sweaters at that price
still unsold if there wasn't a mortal catch?
Was made in the 1950s in 2006 too mortal for me?
Well, were there holes? Were they coming apart
at the seams? Was the style dowdy or old-fashioned?
Taking last first, he pattered: Classic
means classic; you could wear these any year
and never look out of place. Test them yourself. Pull
at them. They won't even stretch those seams.
And no holes. Okay, you found a tiny one
in the sand-colored arm? It can be repaired.
You see, pristine condition, almost. And only $5 each.
This is pretty much as it will be in the end. So let's see where draft #4 (what was kept after numerous revisions) brings us:
Homemaker turned friend, on a Saturday
Mid-spring, sprang me from my apartment
And we were off to the flea for the bargains.
Jo headed for the “new stuff,” all oil-based
Fabrics in cut-rate, designer knock-offs
While I cast my eyes over what had aged
Into sepia, rounded or paintless with love and use,
Hoping for antiques on sale by the unwitting, fair
For not knowing priceless from worthless myself
Except in the matter of three women’s sweaters,
my size --tags still on -- in navy, ash and sand
Under a sign that read: CLASSIC CASHMERE $5.
(note that in the final version I split the stanza in half and changed the "my size" to "new." I did this because if the size was mentioned, then readers would decide the 1950s cashmere was not the problem but only that the sweaters didn't fit. That was not my point in this poem, so I wanted to steer readers away from that sort of reasoning.)
Why cashmere sweaters at that price
Still unsold if there wasn’t a mortal catch?
Was made in the 1950s in 2006 too mortal for me?
Well, were there holes? were they coming apart
At the seams? was the style dowdy or old-fashioned?
Taking last first, he pattered: Classic
Means classic; you could wear these any year
And never look out of place. Test them yourself. Pull
At them. They won’t even stretch, those seams.
And no holes. Okay, you found a tiny one
In the sand-colored arm? It can be repaired.
You see, pristine condition, almost. And only $5 each.
In 2006, it offended me how flea-goers shunned
1950s cashmere, so valued and precious
When new a sweater might cost hundreds of dollars
Yet 50 years old, like many of us, in almost
But not quite, pristine condition, no one wanted
Those gals, not even at flea market prices.
I fell for the sweaters. I bought all of them --
Navy and ash pullovers, the sand-colored cardigan
And brought them home. Now that we survived
The hottest summer on record, days are crisper
Finally and I've been needing a sweater mornings,
I rise, pull on cashmere the same age as I, a classic.
You can see how the poem is almost in its final draft, but that I need to work on the last stanza and freshen the tired last three lines, which eventually I succeed at doing, though it takes several more versions to get it right.
Now that I've gone briefly through the evolution of a poem as I wrote one, is the process any clearer, or should I do a more detailed analysis, or write a poem on line? I could try to do that I suppose...Anyhow, I may have to work on this poem more. Now that I've looked at it this way, I'm no longer satisfied with it! BD
On Saturday, Lynnie and I speak at the NAMI-Connecticut Fourth Annual Conference, to which Joe and I are going as registered guests to attend workshops etc then on Sunday Joe and Karen leave for the Clinic because on Monday Joe goes into the hospital for an overnight stay to get ready for his PEG operation on Tuesday. I truly wish I could be there as I would be waiting for him when he got out of the OR and I would make sure to visit him as much as he wanted during the day, whereas I believe Karen plans to spend the day at the Mall, though that may be Monday and NOT Tuesday. Still, I wouldn't let him be alone all day Monday either, but would go with him to the hospital or meet him there as soon as I could.
But alas, the date coincides with a speaking engagement that has been planned for nearly a year in advance, to which nearly 1000 people will be coming (Patty Duke is the keynote speaker, so of course she's the draw) and there is no way that Lynnie can do an hour and a half on her own. Plus, I think the whole presentation sorta loses its impact without me...But I wish to god I didn't have to be there as I'd much rather be with Joe, and told him so. At least Karen will be there, but I know he wishes I could be too...That's one really big drawback to having a schedule that you can't easily cancel. I could, were I the only one who could go with Joe, but since Karen can, and is driving with him, I don't feel right about cancelling this other event at this time. Another time, I might.
Today I visited my surrogate parents, Cy and Lynn, the couple I've known as long as I've known Joe, who have stuck by me through thick and thin and kept a seat free for me at their table any time I wanted to come over for lunch or supper. They have spoken with my doctors and nurses and visited me in almost every hospital I have ever been in, almost every time I've been there since 1985, all times when my own parents were out of the picture. They were the ones to bring me special gifts of homemade food or cups of Dunkin Donuts coffee and items I needed that I hadn't brought with me, or to give me a ride home when I was discharged. Cy used to come into the hospital when I was catatonic and announce to one and all that Uncle Cy was here and was taking Pam out for a walk. Then (this was when a unit could still be "open" rather than locked) he'd get me out of bed and put me on my feet, put an arm around my back and take my both my hands and gently guide me, pushing me ever so slightly to keep me going, down the hall and into the elevator and out the door, all before anyone could object to his taking me, never mind his even coming in when it wasn't visiting hours. When I couldn't be roused even to "be walked" like that, and couldn't bring a spoon to my mouth, Cy would literally feed me.
Cy was the one to suggest the glossy national magazine, Tikkun, whose editor was Clinton's cultural advisor, for a poetry submission, and lo and behold, they accepted my poem, and even paid me for it. Lynn adopts my dying plants, which I can't bear to throw away, and heals them, then grows another or several more healthy plants from the poor specimen I gave her and returns to me a robust plant that will survive even in my always too sun-warmed west-facing apartment. We can talk about almost anything, anything but the one subject for which she has no give, no flexibility, no open-mindedness, which is Israel. But except for that, which I stay far away from, we are politically as one. That is a relief, because if Cy and Lynn were right-wingers I dunno how I could possibly feel as close to them, mistrusting as I do, fundamental right wing values.
But they are both in their 80s now, Cy 85 or is it 86? and Lynn is 80. Both are not well. Lynn almost died this spring when she caught viral pneumonia while they were vacationing in Israel and she is still not her old self. She is in constant pain, despite oxycodone, from a damaged shoulder that has been declared untreatable. Hence, she sees a chronic pain specialist, but so far, no helpful results yet. I hate to see this, because the quality of her life is so diminished when she is in pain, and that is so important. I wish they would be more agressive about making appointments when the pain continues, but perhaps they do get the earliest ones available, it just happens they are several weeks away.
Cy is also "getting old" -- I mean, he is 86, but he is suddenly showing his age in a way he never did before Lynn was so ill and he had to take care of her. I think it has exhausted him and it shows in his limp and his use of a cane to walk. Despite Lynn's emphysema and weakness due to prednisone-induced myopathy, she walks faster with her walker than he does with his cane...all of which is pretty scary for me to see. I'm glad that they have so many people stopping by to help and visit, so they are not alone and without anyone's assistance. I help Lynn on the computer once a week and would do more, but basically that is all she seems to want me to do right now. Maybe once I get some driving lessons (Karen's idea!) under my belt, I'll feel better about going more places and can offer to do errands or get things for them.
Agh, too many people are too close to mortality right now for comfort. I realize that none of us know when we will die, and that I could die tonight in my sleep and never know it, or in a car crash on my way to anywhere etc etc but you know what I mean. Barring unforeseen circumstances that can shorten anyone's life, we all expect to live the average lifespan. But too many people around me are approaching a place in their lives, natural or due to illness, where death has become, well, all too thinkable. I don't know how I will handle it, in either sense of the word "how." ("in what manner" and "whether I will or not").if Joe dies and Cy and Lynn and even my father goes...Oh, I understand they have to. We ALL die. But I do not know how I will handle it.
Today, Joe and I drove to New York state to see my infectious disease specialist, Dr L,, who is treating me for something that many such physicians believe does not exist: chronic Lyme disease. No matter that he keeps finding the Lyme bacterium -- or its DNA -- in my blood or urine, proof that I am still infected; no matter that I become symptomatic in a month or two when taken off the antibiotics, or that the symptoms disappear within 48 hours of being put back on them. No, according to the Establishment, which is commanded by Yale University so you know it must be Right, right? (HAH!) according to the Establishment the disease is always curable by 3 weeks of antibiotics and there is no such thing as a recurrent or chronic Lyme disease. You have continuing symptoms? Well, they are simply "residual symptoms" (ie symptoms without a cause, because there is no infection anymore!)
Anyhow, my Lyme disease has taken many forms, from causing hip disintegration that looked for all the world like avascular necrosis, but which healed by itself instead of getting worse and necessitating a hip replacement and immense weakness and fatigue due to nerve damage in my muscles, to central nervous system symptoms ranging from memory deficits to increased psychosis.
Lyme, though known at first as Lyme arthritis, is a neurotropic disease, meaning that it is directed first and foremost at neural tissue, at least according to what I have read. This means not only the CNS but also peripheral nerves, and neurons of all sorts. Because of this, manifestations of the disease are legion; in fact it has been called the Great Imitator, because it can mimic so many different diseases while being none of them. (It has even been known to masquerade as ALS, at least before the differential diagnosis.) For me, the first symptoms seem to have been gastrointestinal but soon multiplied, after the initial tick bite and rash (which I ignored, not knowing a thing about Lyme ticks or rashes); I wound up in the ER at least twice for dehydration, having spent the day vomiting for no known reason; I was found to have a chronic B-12 deficiency and resultant neuropathy; there were clear changes on my brain MRIs nine months apart, one with scar tissue, one without. I also startled way too easily. I startled when someone knocked on my door or called my name, I startled when someone jostled me or touched me, I startled even at thoughts that "surprised" me. I couldn't anticipate everything, so almost everything startled me, most especially lightning, which made me scream involuntarily each time it flashed, though I wasn't the least bit afraid of it, only embarrassed by my screams.
Eventually, a Lyme-knowledgeable psychiatrist heard about this from Lynnie, who was doing her best to find out what was wrong with me, and said she had never seen this sort of reaction, a kind of startle reflex you mostly see in infants, except in CNS Lyme disease. We made an appointment for me to see her ASAP and she confirmed her suspicions, telling us that I should make an appointment with a "Lyme literate physician" at once, so that antibiotic treatment could be initiated. That's how I cam to see Dr L.
I have seen him now for about 3-4 years and have been on and off antibiotics, the last time off from April 2006 to August 2006, which is when I was in the hospital. The reason this is so significant is that I believe that the only reason I had my relapse, the only reason that the voices overwhelmed me, that my father's illness overwhelmed me, was because the Lyme disease had started creeping back by then (July) and had lowered my resistance to stress. I think this because I also experienced rage reactions in the hospital, which characterized the first episode of Lyme disease as well, and has done so since, and because as soon as I was put on antibiotics both the rage and the startling ceased within 24 hours, about the time it takes for antibiotics to start working. The brief but extraordinarily vivid and detailed paranoid plots that sprang up and then popped almost daily were also reminiscent of those that characterized my initial bout with the disease, quite separate from the underlying unchanging theme of paranoia that runs my life.
Since then, I have not had a problem with startling once, nor any episodes of rage or the brief outlandish plots whatsoever. Sure, I've gotten pissed off, but I haven't screamed and thrown things and gotten out of control the way I did in my Lyme-induced rages. I honestly believe that if I was paranoid and psychotic anyway, the Lyme disease made it ten times worse, and probably made the hospital necessary rather than avoidable. It surely extended my stay and exaggerated my native paranoia.
Lyme disease is in fact epidemic in this country, despite what the Establishment says. Lynnie has seen a great deal of it in her practice, with patients who do not get better and do not get better until she has them tested for Lyme, and they come back floridly positive, start on ABs and finally respond to treatment, both psychiatric and medical. Now, the tests are not very good, in that a negative test means NOTHING. The negative test does not mean you do not have Lyme, it merely means that the test did not detect it this time for some reason or another. Some people with Lyme never test positive. But a positive test is gold, because it is the proof the Establishment needs in order to justify treatment. It's a lousy situation, but the fact is, there is no way to directly test a person for Lyme disease, so the diagnosis is often iffy and often derived more from clinical observations than from test results.
Nevertheless, I am convinced that Dr L knows something the establishment is in denial about, because whatever they choose to believe, longterm ABs have worked for me and every time they have been interrupted, I've had a relapse of one sort or another.
...in Joe's life is someone I'll just call Kay for now. Joe told me that she was only interested in "style and fashion" so I had a rather low opinion of her before I met and came to know her better. He said he couldn't have as good a conversation* with her as with me, which I took to mean, an intellectual conversation and I wrote her off as "vapid" as best, pushy at worst, since Joe always complained of that. But for all that, I barely knew her, knew of her, yes, but only knew her by sight and by name, that was about it.
Then Joe got sick and we were perforce thrown together, the two of us being the primary caretakers, insofar as Joe needs care. I had more trouble with Kay than she with me, feeling that she was indeed pushy and trying to monopolize Joe and take charge of everything. But after I learned more about ALS and she realized this, and that I knew more about it than either of them, she acceded to this and started letting me in, not leaving me out of all the planning and decision-making. After all, I was the resource that could explain things to them now.
I still have some trouble with her, though. We "huddle" to discuss Joe's problems as they come up, his stubborn refusal to do something simply because he doesn't want to, his being overwhelmed by too many phone calls to be made, the decision to be made vis a vis his PEG and so forth. And we usually come to some agreement as to who is going to take what responsibility for what task, either with Joe or not. But sometimes, I'll take on a "job" and get it started, only to find out at a meeting of the three of us that Kay has duplicated my efforts in a different way and actually gone above the heads of the people I am discussing things with, screwing things up into the bargain. When in fact, she doesn't know what she is doing or talking about! This had to do with the PEG and my task to find out more about when and where and how quickly it should be done. I had the query out and people working on the answer, but Kay decided she could make a phone call to the neurology secretary to get the answer. Well, the secretary had answers, different from the ones I was getting, and so Kay took that to mean that her info was correct and started making appointments on that basis until I got furious and told her to STOP! In fact, Joe's case was being evaluated individually already and appointments would be made when their decision was made. Finally, just today, she got the message, and will, I hope, cease and desist from now on.
Despite this, I have come to like her -- somewhat. At least, we have gone out on weekends twice, to have a soda or go shopping, and talk, and I've not been bored or antsy to go home. She has led an interesting life compared to mine, did a great deal of traveling early on, and, as I wrote in my poem, lived in Paris and Hong Kong and traveled in every continent in between, despite severe juvenile rheumatoid arthritis. She said that the traveling was terrific because it was an opportunity to learn all sorts of things everywhere she went, an attitude that is near and dear to my heart.
The best thing about meeting her is that I have at least one other person in the building to talk to besides Joe. She is in fact the only other person I have met here in 11 years to actually go out and do things with, the only person I have ever talked with at any length or who has seen my apartment, the only person whose last name I know and her telephone number, the only one out of 250 in the community! So this is a bigger deal than I have made it out to be, and may well be more important than I know as Joe gets sicker. I know Kay is extraordinarily supportive of Joe, though she has only known him a year and a half, which helps me tremendously. And she doesn't seem to take my snapping at her personally or at least with equal and opposite rancor, but patiently and without responding angrily herself. All of which is very helpful in the situation, both for me and for Joe.
So I'm going to reserve judgment and let time show what Kay is like. After all, friendships can grow and develop out of shaky beginnings, and you don't have to instantly be sympatica, I learned that long ago when I made friends with my worst enemy. So if my enemy can become my friend, maybe Kay and I can find a friendship that is mutually worthwhile and satisfying. It would be great, if possible, and I would gladly welcome it. But I can't push it; I can only wait and see what happens.
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*BTW The conversation Joe couldn't have with Kay was probably about engineering and inventions...Which I have patience for and interest in, but which Kay is at least honest enough to tell him bores her. It is probably only that engineering bores her that makes Joe say that her conversation is of no substance, since nothing but engineering interests him when all is said and done! BD
Here are two more poems with a word or two of explanation after each one, if needed.
FACING FACTS
Men once burned for less.
To say the earth was like an orange
or an eyeball -- the very idea of it
threatened souls.
And who wanted a globular world
where there was no true center,
where one longitude led to another
until you met yourself coming home, where
huge unspeakable intimacies were not
impossible?
If the entire landscape of Christendom
felt menaced, is it any wonder
when his sister informs him
the world is round
two year old Oliver races to the kitchen
burying his face in his mother’s side
afraid to let go, certain the ground,
suddenly tentative beneath his feet,
won’t hold onto him?
Seven year old Hannah’s secretly not so sure
she believes it either,
the fact so contrary to common sense.
It’s obvious the planet’s like a table,
or a plate on the table
of the universe: go far enough
and you’ll reach that steep edge
where you teeter, toes clinging
to dirt that crumbles underneath,
praying lest you pitch headlong
and drown in deep sky.
Oliver and Hannah are my younger sister Martha's children, who are growing up now but were young at the time this incident occured. As I recall, Oliver really was only an exceedingly mature and intelligent two year old.
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HOME EC 101: SEWING LESSON
Hearing “salvage,” at first I thought
of mildewed designer denim washed ashore
with bottle glass and drifting wooden crates
after a shipwreck,
of estate auctions and “slashed” prices
and white sales on discontinued lines
of towels and bed linen,
of my great grandmother’s
stiff organdy wedding dress, brittle with age,
all she could salvage from the fire
that took the homestead.
Learning the language, I incanted
the names as I fingered them: voile,
muslin, watered silk, homespun,
a Braille of woven threads,
remnants salvaged for patches,
the literature of patterns
sheer as smoke: Simplicity, Butterick
the dizzying sophistications of Vogue
not for the faint-of-heart. . .
Not salvage, selvage,
the finished edge of the material
world, basted to its infinite, weather-rumpled
sky. So, the fabric of women’s work:
One Fate spins with callused fingers,
another weaves our mortal cloth,
and the third sleepily bides,
pinking our seams with her shears.
I did go to the ALS support group with Joe and Karen after all, though the support given is all informational, not emotional as one would both hope and expect, given the nature of the illness. I was surprised by this, as was Joe, but I said to him that most people are not used to talking about their feelings and perhaps they would find it threatening to deal with the intensity of emotions brought up when talking about a terminal illness in a group of strangers, especially without a professional guiding the group. So for the most part, people keep a stiff upper lip and maintain composure and good cheer, telling happy stories and accomplishments, not dwelling on their losses, which is, I think, not an entirely bad thing.
Joe has a tendency to refuse to do anything at all that changes his normal behavior and suggests that he is different from before he became ill, such as drinking while dipping his head towards his chest to minimize coughing and taking pills with pudding or yogurt. I told the group this and said he just didn't want to do these things. One man said, "Well, that's too bad, but there are lots of things in life that you don't want to do but you do them." In essence telling Joe, Get over it!
Unfortunately, Joe has a very thick skin, and this neither stung nor impressed him. At lunch, therefore, while he drank only water, a nod to the fact that I'd told him aspirating coke or iced tea could cause pneumonia, he refused to dip his chin while swallowing and so coughed throughout the meal. Why? Probably because he felt it was too hard or too different, or he didn't want to, simple as that. Though he complains about coughing and how much it embarrasses him, I can't seem to get through to him that his own behavior contributes to it.
Anyhow, the person I feared from the ALS Association did come, and smiled at us when we introduced ourselves, though I sent only a small glance her way of acknolwedgment, not wanting to irritate her further, though I still didn't know what I did wrong. She did seem harmless to most people, if not to me. But afterwards, when she said hello, and offered her hand, I gave her my fingers and barely looked at her, didn't really, and quickly left, not wanting my presence to bother her or anyone there any more than it already did.
Later, I realized that there were other explanations for the interaction and her smile and offering her hand, and that I may have been mistaken in thinking she was still or ever had been angry with me. But it took others telling me what they saw and thought for me to understand this. Now my paranoia is less, or less attached to that situation at any rate, and I mostly feel bad that I treated her apparently so badly, since she had no idea I felt as I did, and that I was afraid of her.
The following is a new poem, based on fact, though it needn't be.
____________________________________________________________
AFTER READING THAT IT IS MATHEMATICALLY IMPOSSIBLE
TO PREDICT THE WEATHER FIVE DAYS IN ADVANCE...
Author’s note: Ringing changes is a method of bell
ringing practiced in bell towers and today’s hand-bell
bands in which 4 to 12 bells are rung in strictly
ordered sequences or one-use-only permutations.
Today the rain darkened like nightfall,
curtaining us in sudden pewter
on our way to the furniture store
to look at “wall units”
for holding books and paper
and all the myriad ends and oddities
that make my writer’s life
after a lifetime of hospitals.
Sodden in the sudden flood,
we pass an Olive Garden and stop
for soda, for lunch, to get
off our feet before the next dive
into commerce. When we leave again,
sunlight’s platinum limns the gray
and we are two women
on a mission. Still, you tell me
as we get back in the car
how you once lived
a professional traveler’s life,
Paris to Hong Kong
and all the continents in between,
a suitcase your snail shell, each trip
an educational orgy
you’ll never forget now that you can’t
work any longer and must live
on a meager Social Security,
your savings, never large, long gone. Life
I assure you, is a beach, no pun.
First the tide swims heartily
high upon the sand, lapping at dunes
and sharp salt grasses,
then it is sucked back out to sea
just like reversals of luck and fortune
for nothing lasts but change,
which is constant.
Church tower bells once
solemnized these permutations,
boys lifted featherweight on ropes
to the rafters, up they swung
and down, up—
and down— a majestic peal
changing the ringers
ringing the changes.
PLEASE DO NOT READ THIS IF YOU PLAN ON SEEING US IN HUNTINGTON, L.I. OR IN WALLINGFORD, CT AT THE NAMI CONFERENCE AS IT MAY SPOIL YOUR EXPERIENCE THERE. [Sue M. this means --->YOU<---]
I thought you might like to see what we do during our speaking engagements, since it is most likely you will never hear us speak, especially since we have mostly been turning down requests recently, wanting time to write and simply live normal lives again. Of course, I can't reporduce our whole "routine," so these are only our speeches -- from our usual presentation in 2005 thru 2006 (spring). We are currently working up something new. In any event, both presentations are or will be longer than just what appears below. Sometimes we incorporate an audio-visual, a powerpoint presentation, sometimes readings from the book. Usually a bit of twin-stuff, fooling around, a joke with a true story ending that never fails to put the audience at ease, that sort of thing, with the whole thing followed by a Q and A session. But the speeches are the most important part and they come after all the above. I speak first followed by Lynnie, whose speech ends the entire presentation and you will see why. Those of you who have read my blog from the beginning may have seen parts of my speech before, but most of it has been reworked and redone from that earlier version.
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PAM:
I could be your daughter or your son, your sister or brother, your mother or father, your friend or your neighbor. I suffer from schizophrenia.
For decades, I’ve lived, along with almost three million other people with schizophrenia, in a desolate, dark, little room with a large padlock on the door. The room is stigma, the darkness is fear and the lock is ignorance.
I want to speak to you today to break down the walls of fear and suspicion, unburden you of the myths and mysteries that lead to stigma and get you open that door. I’d like to tell you some reasons why medication compliance is such a difficult issue in schizophrenia and a little about how I began to recover.
Medication. What a struggle! I was never going to take medication. Medication meant I was sick. I hated that word, I hated the label, I hated the very idea of a label. But I hated the side effects most. Never mind what medication did FOR me, I hated what it did TO me.
For starters, there was, and I have a whole list here: dullness, deadness, lack of motivation, feelings of impending doom. Then: not being able to swallow my saliva, overwhelming sedation, a sixty-to-seventy pound weight gain. Drooling or dry mouth, stiffness or shaking, an agonizing restlessness, a permanent movement disorder.
Well, given all that, what would you do? Time after time, I stopped taking first one pill then another and another.
Predictably, I became psychotic again. People with schizophrenia are faced with this all the time. Either they choose psychosis or they suffer side effects that can sometimes be as bad or worse than the illness. Side effects have to be reckoned with or compliance will be zilch, even with meds that obviously help.
The right medications can help, though, and when the side effects are tolerable, they make the difference between chronic illness and recovery. I wouldn’t be standing here today without them.
But if, as I believed in the mid-1980s, the CIA and FBI control me through a microchip implanted in my tooth, how do I know pills could resolve that? If I hear invisible voices that sound real, and think bizarre thoughts that feel true, how am I to understand medication is relevant? The solution is obviously to get rid of the radio in the wall or go to the Middle East, find 22 linguists, and translate Gray Crinkled Paper?
I asked the dentist about my tooth. For a moment, he looked taken aback, but he regained his composure and answered, “I understand you believe there’s a microchip in your tooth. I don’t think that’s possible. I think it’s a symptom of your illness. But I’ll take a look if it will make you feel better.”
The technician, on the other hand, passed over the tray of probes then backed a safe distance away. From that appointment on, she made sure I was sequestered in the last cubicle as soon as I arrived and made me stay there instead of the waiting room...
Stigma. Did you know the word “stigma” originally meant the brand from a hot iron that they would burn into a wrongdoer’s face as a mark of disgrace and shame? Did she think I wouldn’t understand?
Side effects, lack of insight, stigma -- each can lead someone to stop taking medication and compliance is usually a necessary first step towards recovery. But what about talk therapy? Doctors in the 80s and early 90s frowned on it. Therapy was for neurotics; if a person were psychotic, by definition psychotherapy would do more harm than good. Better to use Haldol or long acting Prolixin and leave their psyches alone. But people with schizophrenia are often frightened, lonely and confused. At the very least, we needed someone to talk to. Thank god, I had Lynnie. Sometimes, when I was having a difficult time, she called every night.
Once someone is stabilized, discussion can be even more profitable. The Esteemed Dr O still tells me ad infinitum that I have an illness, a brain disease. She insists that hallucinations originate in the brain and that delusions are not real just because they feel real. She always treats me not as a schizophrenic, but as a person with an illness that we happen to call schizophrenia.
This is important. We don’t call a person with heart disease a cardiac, do we? Or a person suffering from meningitis – another brain disease -- a meningitic. No illness is all there is to a person or erases the human being inside, no, not even schizophrenia.
In September 2004, voices compelled me to pour lighter fluid over my left leg and set it on fire. I had 3rd degree burns, a skin graft, the whole terrible shebang. July 2006, in again. This time the voices wanted me to burn the rest of my body.
I’d been admitted and committed to psychiatric units for a total of more than 8 years by then, not including the years of halfway houses and day hospitals. I’d been sent away, locked in, shot up and tied down more times than I could count. But “institutionalization” is as much a state of mind as a statement of fact. In the end, it came down to a simple decision, black and white.
Life. Or death? Which was it to be?
It’s too long a tale to relate just how Lynnie helped me make the choice, but you see the results before you. If staying out of the hospital meant taking 22 pills every day, then, I finally decided I was going to have to swallow those 22 pills come hell or the whole of Long Island Sound lapping at my door.
35 years after my first hospitalization I’m in the process of recovering from this lifelong illness – and I think that’s what it is, a process, with ups and downs and different for each individual. I no longer count hospitalization as a failure, but as a mere blip on my way. A lot of life passed me by in 35 years. I’m 53 years old on the outside but inside I’m no more than fifteen. Sometimes I feel a lot younger than that. I lost so much of my life...35 years. Will I ever catch up?
It’s sometimes very hard, but I’ve chosen life, and that means I go on, no matter what. Still, when I look back, I don’t know how I survived all those years. I tried many times to avoid living. I tried to become a statistic. But Lynnie’s hope and Lynnie’s faith and Lynnie’s love pierced the darkness and made a life’s worth of difference.
Life is for living. Today is all we have and all we know. Enjoy what you enjoy; when you suffer, suffer well. Remember, as my piano teacher used to say, it’s all in the wrist.
Those are not bad lessons and you can learn them from the same people you keep locked in that dank little room. We have so much to teach you. That’s what I mean you see. Don’t keep us locked away. Wondrous things can happen when the doors open and the walls come down.
CAROLYN:
In the early twentieth century an 18 year-old girl showing symptoms of a dread disease was sent far away from home. She would never see her family again. She may have died from the disease, but not until many lonely years had passed.
The affliction was Leprosy and there was no remedy. For millennia, no disease was more stigmatized, more feared. Lepers, and those merely thought to be lepers, were publicly shunned and legally exiled to colonies to protect the rest of the community from infection. This may or may not have been justified but the cruelty with which they were handled makes one certain medical quarantine wasn’t the only motive. Where stigma is involved, it never is.
During the book tour for Divided Minds, in the lobby of a public radio station, waiting for a noon interview, I quickly recognized the face of a columnist well known for his satiric angle on political issues. I nodded hello and sat down. He asked to see our book, and after he read the title, he peppered me with questions. I told him that Pam had been in and out of hospitals. He looked over at my sister who sat next to me but wasn’t talking and watched as she ran her hands nervously over the tops of her thighs.
Turning back to me, he asked about medications and did she take them and had she had shock treatments. I started to give him my usual explanation about electroconvulsive therapy and Hollywood when he interrupted, “Does the title mean you both have schizophrenia?” I told him what the book was about and this man who had been eagerly engaged in conversation, abruptly went silent. A moment or two passed. Then he said, in a quiet voice but unashamed, “My mother had schizophrenia. They put her in an institution for thirty-five years. I never knew her.”
Patients with schizophrenia and leprosy don’t fit our Norman Rockwell picture of American society; their lesions, their behaviors are odd, ugly, they disturb the superficial harmony we work to maintain. Leprosy is now curable with antibiotics, but schizophrenia defies both precise definition and cure. In the twentieth and even now in the twenty-first century we still treat patients with schizophrenia like lepers; we may not exile them to island colonies, but we relegate their illness and treatment to a lower status. We treat them as dispensable, especially when money is tight – and when i ask is that ever not the case? But I’ll paraphrase 1 Corinthian’s Ch12 verse 22 (bible scholars in the audience please pardon me) The body can’t say to one part I don’t need you, a finger is just as much part of the body as an eye, an ear as much as a knee. Just so the social body, that is, society. We can amputate parts, we can exile lepers and people with mental illnesses, but we are incomplete without them. We may not see them, but we are still handicapped without them, still wounded. Isn’t it better to keep the part and try to heal it than simply cut it off? This is what organizations like Fellowship Place, NAMI, Fountain House, Community Partnership of Southern AZ etc are all about -- helping patients recover their self- respect and reconnect with their communities.
People ask me; what’s it like to be a psychiatrist and have a twin sister with schizophrenia? Fifteen years ago a friend of the family took me to a meeting of families in the basement of a church in southwestern CT. After coffee and introductions I spoke to the group about schizophrenia and my twin sister Pam.
Pam, older by five minutes, was brilliant, creative, had a gift for writing that had been recognized as early as elementary school, while I had been slower to develop, shyer, and during our childhood had seemed more fragile. Pam had been expected to lead, and during our early years, I kept myself safely in her shadow.
Pam was supposed to have become a physician. Instead she spent decades suffering the ravages of psychosis and had been in and out of hospitals for years. Meanwhile I took her place in medical school, got married and started a career as a psychiatrist. I knew Pammy was desperately ill, I recognized all the symptoms of Sz, but I was her sister, not her doctor. What could I do? In those days, members of the family were not only discouraged from talking to the psychiatrist, we were rarely allowed any contact at all. Even though I was a psychiatrist myself and sometimes knew the current treatments better than her resident-doctors, I felt somehow…the enemy.
Confused, I turned to that meeting of families. 15 years ago - it was the first time I’d ever spoken about my sister’s schizophrenia in public. I cried. The others cried. The woman, the friend who took me to the meeting, died unexpectedly that summer. I never went back. I should have.
Instead, I waited until this book came out before I started speaking in public again. Now, talking about the memoir, about schizophrenia, about my feelings about Pam and the illness and what it has done to her and to me, what Sz has done to our family has been the most liberating experience imaginable.
It has not been easy. Pammy didn’t ask for Sz, but she’s had to deal with it for over 30 yrs and so have I. For too long, I tried to deal with Pammy’s illness alone, shielding my family from most disturbances, inconvenience, and care. After 2000, all this changed and even more so with the publication of our memoir.
Schizophrenia is no long a taboo subject in our family. We talk openly about Pammy now. I am mute no longer. Sz is a fact of my life and theirs. It may not be fun all the time, but the more you know, the easier it becomes.
Schizophrenia has the power to destroy brain tissue yes, and with it much cognitive and other functioning. But schizophrenia’s power to destroy a person, a relationship, a family, is only as great as we allow it to be. It almost destroyed our family. Almost. Why? There are myriad reasons. In the 1970’s, no one understood that Pammy was psychotic. When someone is accusatory and bizarre it is very difficult not to take it personally even if you know the person is psychotic. If you don’t, it is that much more difficult.
In the 70’s, there wasn’t much to be done for schizophrenia except a few barely tolerable antipsychotic medications and hospitalization, which Pammy will tell you did more harm than good.
Pam’s journey, my journey, our journey, is shared by every one of you, ill or well, whether the disease is schizophrenia or Alzheimer’s disease, depression or Parkinson’s. Our journeys differ only in the details. We’ve all been through the highs when we think, “This is it. This time we’ve got it beat. No more relapses. This time no more dickering with the damned medication!!!” We all recognize the gut wrenching 16 story free-fall of the 3 AM phone call, the sleepless nights, the fists into the pillows or walls, or dashboards. The missed school conferences and games, the angry calls from the coach or sitter or neighbor or spouse who had to take up the slack one more time and doesn’t understand your depression or your depressed kid or brother or wife.
And every single one of us has known discouragement, frustration, rage, and that black wall of despair, and finally each one of us can remember deep inside just how close we have come to giving up …maybe more than once…
But all glimmers of hope are hope, just as all drops of water are water. Hope, dreams, and billions in pharmacologic research have brought us out of the dark ages of blaming mothers for causing schizophrenia and the back wards for chronic mental illness. It’s only because of hope, dreams and pharmacologic research that has brought a sea-change to the treatment of neuro-psychiatric disorders, that illnesses that used to lead to a lifetime in hospitals now can be completely treated and kept in remission.
Where once there was despair there is now hope and and a door to a full normal life. Remember, until this year Pammy was in and out of hospitals more than 60 times. In her entire adult life until we started the book tour in August 2005 she had never eaten in a restaurant better than a diner, had never stayed in a hotel, had never tolerated a crowd except crowded psychiatric units, and public speaking? Well, she had given poetry readings to tiny audiences, but speak before more than 300 people as we have....
It’s only because of hope, dreams and pharmacologic research, a lifetime of treatment and a network of friends, family, visiting nurses and dedicated case-workers, therapists, and helpers of all kinds that Pammy stands here today [she stands]....but stand here she does on her own two feet. As close to well as she has ever been. A year ago I thought I might lose her. One year ago. And today? Trust me. Miracles happen.
I saw Dr O today. I actually drove part of the way there in fact, to see if I could handle the highway after years of avoiding it and also to take over for Joe if I could and spare him the trial of having to drive all the way there and back (an hour each way). I know the drive tires him, but he insists on taking me, and won't let anyone else do it, yet...
Anyhow, as I said, I saw the doctor today and I brought the e-mails that so troubled me, as well as yesterday's blog entry and Kate's comment, the only one posted at the time, though she would have appreciated the others as much as I did. First of all, after reading the e-mails, she said she not only could detect no hatred or even anger in the missives to me, but not even any curtness. In fact, she thought one of them in particular went out of her way to offer me assistance ASAP, once Joe makes up his mind as to where he wants to be treated, the CT clinic or the MA one.
When she read the blog entry and the comment written by Kate, she leaned forword and said to me, "Kate is exactly right. Listen to what she writes." Then she read certain parts to me about my NOT being Satan's spawn and what Kate thinks I am really like, which made me squirm. "The feeling that you are hated, that you are poison, Pam, that's your illness, it's paranoia," she continued. "It's the feeling you carry around with you everywhere you go, even when you are trying your best to help Joe. But you have to trust us, trust me, when I tell you that it isn't happening, it isn't real, no one is hating you or being poisoned by you. It's just a feeling, one your illness makes you prone to have..." (I paraphrase of course, since I don't remember exactly what she said, though I think I got the gist of it pretty well.)
Well, that reminded me of the Reality Test, the trust part of it, especially when she mentioned the part about my thinking that people are secretly wishing me harm or hating me or conveying subtle messages...how all those are signals of paranoia that I can't see when I'm in the midst of it. And she is right! I can't tell, when I am in the middle of a paranoid "fit," that thinking someone is secretly communicating hatred or is being poisoned or killed by something I've unknowingly done is in fact paranoid. But later, when calmer, I can see it, if someone or something suggests to me that I look at it again, in the light of the word SECRET or POISONED or UNKNOWINGLY, some trigger word that I always use when paranoid. If I hear myself using those words, or remember that I used those words earlier, perhaps after the fact I can stop the episode: once I know that those words mean I am paranoid then I can't take them seriously any longer and will no longer labor under the delusion!
By the time I left her office, I was feeling better, convinced that I should at least go to the support group with Joe and Karen, even if the ALSA person is going to be there. I will hope for the best, or assume that she holds nothing against me, as Dr O says her letter indicates neither anger nor ill will, and I have to trust that she can "read" it better than I can.
Thank you Paula, Kate and Yaya for your so kind comments and loving support! I think I am stressed out about how fast Joe's illness is progressing, which he acknowledges himself, and how many changes are taking place at one time. I am tempted, Kate, by the idea of doing crafts as a way for some time away from writing. I have a plan worked out to make a large papier maché turtle that I've been itching to do for a long time. But I dunno if I can give myself the freedom and permission to set up things and make it. I'm afraid I'll get halfway through, or make it, but then not paint it for a year or two and it will just sit in my living room, taking up a lot of space! But I have to admit, it does attract me awfully, the idea of building it...
Joe has been very tired these past few days and I don't know if he should be driving me to my doctor's appointment an hour away tomorrow. I may call to cancel or at least to have a phone appointment or insist that I can drive at least part of the way, so long as he "backseat drives" enough to keep me on my toes. I'm scared to drive, but more than that, I'm afraid that were I alone, I might fall asleep at the wheel. I think with Joe in the car I'll be all right, because we can talk and because I can always pull over and have him take the wheel. But I wouldn't dare do it all myself, not yet, not until I know I'm not too sleepy to do so.
I feel so terrible for Joe. He really wants to attend a technology negotiation seminar he signed up for for November in Cambridge, Ma but we are all afraid he won't be able to tolerate the time, that his stamina will flag so easily that he won't enjoy himself or last long enough to get anything out of the conference. Still, he may enjoy just going, just trying, and if so, that'll be enough. I really want to accompany them -- Karen and Joe -- but so far Joe won't let me, fearing that I can't take my medication on my own for four days and nights, which is utterly ridiculous. I've been on the road for the booktour longer than that! But so far, he won't budge...
We went to the pulmonologist the other day, did I write about this already? If so, forgive my repeating myself. He explained that a "soft diaphragm" which is what we've been told Joe has, is when the diaphragm doesn't remain flat along the bottom of the lungs and then pull downwards in an arc to allow the air to flow inward as one takes a breath. Instead, it simply stays where it is, or even bows upwards on inspiration, which is accomplished by the intercostal muscles (those between the ribs) and other chest and back muscles expanding the chest sideways and outward instead of downward. Dr FJ told me that Joe's diaphragm, when he watched it, still moved downward "slightly," which Joe heard as a good sign, but which I took as rather dire. When the diaphragm goes soft suddenly, you die within hours, but as the doctor explained, when it goes gradually, it is like slowly developing anemia, you can get used to it and live by breathing with the other muscles for a longer time. That was a relief, I have to say.
Also, the machines were delivered yesterday, the BiPAP assistive breathing machine, the suction machine for Joe's so far only occasional drooling and a cough machine called an In-Exsufflator. He tried using the BiPAP last night, but because it covers his mouth and nose completely, and he had to cough up phlegm several times during the night, he almost choked, and had to take it off finally. Too bad, because he used it during the day for a while and said it made him feel a lot better. No wonder, as it relieves him of the burden of too much carbon dioxide and allows him to take advantage of the oxygen that is already in the air that gets to his lungs. In other words, pure oxygen would NOT help, because the problem is that he can't get rid of the carbon dioxide, not that he can't get enough oxygen from air. He is getting plenty of oxygen into his lungs, but the carbon dioxide is sitting there, not allowing the oxygen to penetrate.
As for me, well, I have been quite upset by this, but also by the fact that everyone is angry with me, hates me in fact, everyone in the ALS association and at the Clinic, even though all I've done is ask questions on Joe's behalf and try to straighten out things that Joe is confused about. I was very polite and careful about who I e-mailed, I never talked to anyone in person or by phone, but somehow I did the wrong thing and now they hate me, for some reason I'll probably never be told! How do I know? I can tell from the e-mails I'm being sent, their tone, and the words they use...Even though Joe and Karen don't see it, I do. I know how they used to write me, and how differently they write now. It's obvious things have changed and that I'm the one they are blaming...So I go to bed crying, because I just tried to help Joe and now I don't know why they are blaming me and hating me, even though Joe is innocent, and they don't take it out on him, thank god. I just don't know what I did wrong!
I hate myself! I should just stay away from everyone and not bother a soul! I always ruin everything and alienate everybody and eventually they all end up hating me anyway. I am simply poison to all and should have known better than to try personally to help Joe, when personally I can't do anything but hurt people, no matter how hard I try to do the opposite. That's what Satan does by nature: hurt people, do things that make people hate her (who doesn't hate Satan?). I poison people...So I should have anticipated that such would result from any effort of mine, whatever the intention. The road to hell is paved with good intentions after all, isn't that what they say? Next time I'll stay in the background and let Karen negotiate the system and find these things out, pushy as she is. At least she'll get answers, whether or not they'll be useful I can't say, but she'll get answers, and people won't wind up hating her guts or by extension being fed up with Joe. But there won't be a next time, will there? There is only one Joe and I've screwed things up for him enough. I'll just step aside now and hope their hatred for me doesn't affect his treatment.
The following are excerpts of an interchange I had with someone who follows this blog and who gave me permission to use it. Together we ask for responses to her final question, which I, being a patient and at a loss, cannot answer. I have done some editing for clarity.
Dear Pam...My son always says his head is very busy in the morning and he hears a lot of thoughts going on. When I inquire if these are like voices, he says, "No, I never hear voices". So, I tell him that it's ok if he hears voices and that that is part of his illness (and he knows that he has sz) and it's ok to talk about the voices and that I wish that he would because maybe it would make him feel better to share. But he still doesn't want to talk.
Maybe he doesn't hear voices!!! Don't you think it sounds like he does? I just wish he were comfortable in talking about it, IF he does in fact hear voices. Sorry if I seem to be talking in circles. And it bothers me that I would be concerned so much about the voices. So what? He hears voices? Big deal? Why does it matter to me? (I also express this to him.)
The other thing that my son told me is that he has to smoke a certain number of cigarettes at his day program because if he doesn't, the demons will come. In the past, he used to tell me that smoking keeps the worms out of his body (he was VERY sick when he spoke about the worms). Now maybe he has always felt this way about the cigs, OR maybe he is becoming more delusional (not a good thing) OR maybe he is learning to express himself better (which is a good thing).
My question is how can I tell? He says he feels fine and that things are fine, but he says that when he is very ill!!!!!! I find that his illness kind of creeps up and I get caught up in the stress of it and perhaps I am not a good detector of him going downhill because I always beat myself up for waiting too long for a hospitalization because he hates the hospital and I do too!!!!! I could go in circles talking about this and I know that there is no good answer to any of this. (Sorry if I am causing you stress and this makes you think about how Lynnie feels about you when you get sick. Which I know that you are very aware of all of this and I'm sure that my son is too) So anyway that is my recent worry...
Here’s the question: How do you know when your loved one is getting sick and how do you know when it's time for the dreaded hospital?...Because it's not only the person with the illness that HATES the hospital, but it's also the family members. Actually, one of the reasons that I hate the hospital is because often they use restraints in the ER unnecessarily. If my son says he needs a cigarette, they react... oh - oh he's getting agitated and we have to restrain him. It's sooooooooo ridiculous and I just HATE their "procedures"!!!!! They ADD to his illness and they give him (and me) post-traumatic stress disorder.
Thanks,
S.
Dear S.
Boy, you really are bound up in your son’s illness...It sounds like you need a rest most of all, from worrying, from watching, from having to observe every tiny little thing he says and does and analyze it in terms of his SZ and whether or not he is getting ill again...I'd make that call on Tuesday. AND I'd contact NAMI immediately if not sooner and get involved with them, meet other parents and find someone to talk to there. I think that would help tremendously, to find other parents who have been through this too, and have come out the other side. I dunno if you are from a NAMI group or not, I don't remember, but if you are, why haven't you found anyone yet? Surely there are parents in situations much like yours. That's what NAMI is all about!
I wish I could solve your problems with your son, but as you know, SZ is different for each one of us, and I am not in his head. I can tell you one thing I do know: certain people with SZ call their thoughts heard aloud “voices,” so it is entirely possible that what your son hears could be thought of as voices. But if he doesn't interpret them that way, maybe it is better not to call them that until he does, though for all I know he recognizes it already, just doesn't want to say it aloud. Sometimes, when people called things by their real names -- voices, delusions, hallucinations -- even when I couldn't, it was very reassuring to me to know that they were phenomena of SZ, not necessarily real, even though they felt real. But like I say, we are ALL different in this illness and what worked for me might not work for your son or another person.
Thank you for giving me credit for thinking of Lynnie when I get sick and worrying about what my illness does to her...Alas, that is not the case at all. When I’m sick, I do not think about anyone nor do I feel anyone’s caring or compassion. I feel utterly and totally alone, bereft of all love, and in fact I feel so persecuted and hated that Lynnie becomes one of my persecutors, not someone who suffers because I’m ill but someone who is trying to hurt me! It was a complete surprise to me in August when I finally understood how hard my hospitalization had been on her. It had never occurred to me that she did anything but take it in stride and simply accept it as yet another in a long string...the same old same old. I never thought it caused HER pain, just because it was torture for me! In fact, I thought she enjoyed my being in pain; that’s how paranoid I was, I’m ashamed to admit.
Restraints are used FAR TOO OFTEN for my taste, I agree. And I think they are used punitively, at least in Connecticut, where hospitals have been cited as over-using them. I am horrified by how little it takes for someone to be restrained here, rather than “talked down” so to speak, and I think sometimes it is done because they can’t be bothered to spend the time, or simply because they don’t HAVE the time...It is more convenient and more efficient a way to deal with someone who is agitated, rather than to truly help them. But I could go on and on on that subject, having been in your son’s position many, many times, and feeling post-traumatized by it myself. The procedure is degrading and humiliating as well as just plain old TERRIFYING and it should be a last resort not one of the first ones thought of.
How to know when your loved one is getting sicker and the hospital is necessary? Well, that is a difficult one for me, because I never know myself. I suppose it probably takes good record- keeping, or a good memory, for a while at least, to know what “normal” is for any given person, what their baseline is, that is to say, even if it isn’t exactly normal (whatever normal means). You need to know how a person functions when at his or her best, or well enough to be out of the hospital, what symptoms can be present even so, what behaviors and symptoms are warning signs, what symptoms signify definite danger signals. It’s all a matter of observation, usually, unless the person is able to tell you upfront what is going on and what they need.
I can usually talk, but not always with enough clarity to make known the direness of the situation, especially if I am planning to take off for parts unknown and don’t want to be stopped, or if I need to follow what the voices tell me to do. I usually don’t tell anyone what they commanded until after I do it, which is counterproductive at best, since it always ends in a hospitalization (or almost always) and a big scar somewhere I regret. The last few times before I set my leg on fire, I put out cigarettes on my face in order to mark myself like Cain, as a murderer (not as God’s protected), a literal stigma, in the sense of a brand. But this last time, I actually called Lynnie first, because I was scared that by immolating myself, I could actually die.
I do not know, frankly, what my own warning signs of increasing illness are, though I know that Dr O recognizes them, from long familiarity with a sequence she once explained to me. And I never recognize consciously when the hospital is necessary. So I cannot help you there...In short, I’m part of the problem. Anyone else have a more helpful response to this question? If you do, write me at pamwagg@cox.net and I’ll post it within my next blog entry.