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Home | About | Donate/Volunteer | Contact | Jobs|  Early
Schizophrenia Screening Test |
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EVENING LAND
“But it should be quite a sight
the going under of the evening land...
And I can tell you my young friend,
it is evening. It is very late.”
Walker Percy “The Moviegoer”
Late in the afternoon
the older folk gather on the porch
to drink and talk
until the sun goes down
until fireflies deck the evening
with their ephemeral jewels
and cicadas scream in the long grass.
The children play and shout from tree forts
and hidden places behind the house.
Teenagers swim, naked, together,
and neck, not-quite-making-love
in the tall reeds by the river. At this hour
evening land is something no one speaks of.
I am twelve, not quite a teenager
and fearful of becoming one
not quite a child.
I sit inside alone
and loaf my way through the summer night
glancing through photograph albums.
They are all there, the older folk,
but younger, unreal in their unlined faces
their trim, youthful, curiously hopeful bodies.
There is one photo of my mother
holding a dripping ice cream cone at the beach.
My father, who must have taken the picture,
is laughing at her or so I imagine
for the picture is tilted slightly
as if he shakes with mirth
while capturing the moment.
A finger has been caught on the lens,
a dark blur on the side.
My mother looks so young, so -- and I admit
this without seeing it in her now --
so very beautiful. Her belly bulges
under her bathing suit: me.
There is an old Zen koan that asks:
What is your face, your true face,
before your parents gave birth to you?
And this is my question even now
as I gaze at her stomach, that sweet swelling,
and see myself as yet unborn.
I wonder if she wants me
in the picture -- me, a girl --
or is she hoping
for her first son?
The adults are quiet now.
Ice settles in someone’s glass, its clink comforting.
Even the children are no longer shouting
from fortress to fort, and the teenagers
are long departed to their netherworld of dance
and electric music downtown.
It is evening land all over the house.
The old clock on the wall ticks time away.
It is very late and all that is left is the going under
POEM WRITTEN WHILE THE REFRIGERATOR DEFROSTS...
and autumn throws its frail bones about the house
and the phone is silent all day.
This poem breaks out of nowhere
under the feeble old torture
of water drip dripping without rhythm,
without pattern, into a stained aluminum turkey pan
that has seen better days and all of them holidays.
I imagine callers, visitors, wrong numbers
struck into conversation
by husky male voices, men who must be
beautiful they are so welcome.
I tell them I am a poet.
I do not tell them I write only when lonly
or when the rotten ice drips softly into a pan.
I tell them all the secrets I’ve been sworn to
and I tell them jokes
just to hear the fine solid sound
of their laughter. I tell them my name
is Mabel Fitzwillow or Phoebe Sparrow.
I am, of course, too old for them
but they need not know it.
When I’m in a good mood I tell them
my aunt was Sarah Bernhardt,
that I, too, am a famous actress
when in fact both my legs are wood
and I have a terrible memory.
I do not recall everything they tell me.
Their stories vary and are not all pleasant.
But once I talked for two hours
with a man whose lover was his own sister.
His voice was sweet, gentle. He told me
he loved his sister more than any other
woman he’d ever met. When we said good-bye
he asked if he might call again -- he had
the number -- might meet, buy me coffee downtown
or take me to lunch at noon.
No -- the truth is that no one calls, no one
visits. All day long the ice melts into the turkey pan.
I write lonely poems of the worst sort
and set each one ablaze on the stove.
By nightfall the ice is gone, the pan full of frost-bitter water.
Carefully I drain it into the sink.
The pan is cold, flocked with bits of ice
and dead insects. I wipe away the grime,
dry all surfaces, then turn the power on once more
and close the door.
(my first published poem)
She was the most unlikely of con artists, a chaplain at a major teaching hospital, working in, specializing as she would come to tell me, in oncology and psychiatry. I was of course, a psych patient, and in terrible shape at the time, bouncing between seclusion and restraints and occasional periods in a regular room -- without a roommate, though all were technically double occupancy. She -- But let me call her Berrie, a name not unrelated to hers but wholly unlike it. One of the stories Berrie would later tell me -- which I now know might never have been true -- is that after we met (I had asked to speak with her) she queried the nurses about me and they peremptorily dismissed me with the comment, "Why do you want to take time with someone like her?" The implication being that I was so beyond the bend that nobody could reach me or would want to.
At the time --several months after my discharge and several months into our friendship -- this oh so casual imparting of such information took my breath away. I tried to get Berrie to clarify what she meant, what they had meant. But she insisted that this wasn't the point. It didn't matter what they meant by what they'd said, what mattered was that she, the Great Berrie, ignored them, saw my value as a human being, and discovered -- tah dum! -- the lost human soul within. Here, she gave me a huge, sunny side up smile.
At that instant, and only for a nanosecond but one that etched itself in my consciousness, I saw something I didn't quite like, something that didn't square with the much loved chaplain image that Berrie projected. I saw vanity coming before compassion, her own self-aggrandizement superceding the simple human decency that says you don't tell someone something like that for no reason but to make yourself look good! And most surely you don't lie and say it happened when it didn't, just to put yourself in a good light! But it turns out that that is most likely the truth of the matter.
Yet from the first, despite any misgivings I might have had about the boundaries she was crossing, I enjoyed Berrie and her funny, wise, intelligent conversation immensely. It struck me as entirely plausible, when I told her about our book, which was at the time still being written, though under contract at St Martins, that it was true she had a memoir of her own at, as she confided in a whisper, modestly, S & S (Simon and Schuster -- i.e. a better, bigger publisher).
It seemed she'd nursed her parents through their final illnesses and that was how she'd gotten into chaplaining...Or so she said. Knowing what I know now, I have no idea if what she said at any time during our friendship was true.
She said she'd been around the world twice. I believed her. She said she'd been kidnapped with her nephew by the Sendero Luminoso in, where was it, Peru? And had by dint of sheer desperate deception rescued both him and herself, though at grave peril. I believed that too. She had studied massage therapy with Chinese masters and Tibetan massage with ditto. She had been in Indonesia and lost friends there to the tsunami. In the US, she had been married to a famous financial analyst of unpronounceable name, or vaguely mentioned so as to be unrecalled, who was often featured on CNN but never when I watched it; she had wanted children but could never have them but nevertheless had homeschooled her husband's disturbed young son and had raised him to be a fine young man, who of course turned on her later on quite unfairly, a betrayal that she took in stride as long suffering and patient as she knew herself to be.
Then I found myself suffering from various small but annoying ailments. These were indeed minor, but I needed Berrie to accompany me to a routine pap smear, which was my first and which terrrified me. She was a great help, I have to admit. That turned out to warrant an internal ultrasound and a "probably normal but let's just do it in case" endometrial biopsy for which Berrie also said she would be present, if at all possible, though her volunteer chaplaining might call on her at the last moment. Note that Berrie was always penniless. At 55, she claimed she could not find a decent job -- would not take a menial one -- and so she "accepted" money from me, sent at vaguely worded hints she dropped in moments of need. Yet, I never wondered how she paid the rent, bought food, or kept gas in her car, let alone dyed her hair, cut her hair (claimed she did it herself only after I told her I chopped my own) bought toilet paper and personal care items, large bags of cat food and so forth...
This is when Berrie suddenly went silent. I didn't hear from her for a week. I called and called, but her she never answered her phone, which screened all calls all the time. Finally I received the usual notice of a blocked call, and knew it was Berrie at last from the slight, forced-sounding cough that preceded her speaking. She hinted that she was unwell but proceeded to forced-cheerily inquire as to my life and health. Eventually she got around to letting on that she had been hospitalized for 6 days, for "tests" as an indigent patient, tests like two endometrial biopsies and an internal ultrasound (which, by the way, I had also endured, and all alone...). She had had a brain MRI and an EEG and, and, and...and her blood was low, in fact she was anemic...pretty low in fact, and it was not responding to iron for some unknown reason. Note again that one of my related gynecological conditions had been a sudden steep drop in hematocrit, resulting in anemia, easily corrected by supplemental iron. But I did not see any pattern at the time, I just felt bad for Berrie and worried.
In later days the picture got worse and worse. She needed a heart stress test or something, She needed a mammogram, but couldn't pay for it. She needed a lung biopsy for her unremitting cough. Finally, I said that she was pretty sick and needed a doctor to pull all these symptoms together, that she had too many doctors and that no one was seeing the whole picture. The very next day she called to tell me, in an excited voice that her floor had almost collapsed and that maintenance people had awakened her in the middle of the night, in an emergency, claiming that the old a/c system ahd slowly been pouring freon into the space beneath her floor and the ceiling below, which was threatening to cave in. She had been smelling some odor all week and had called maintenance time after time, saying she smelled freon, but to no avail, they said it was only rotting food. But of course, she had no food, seeing as she was so poverty stricken. And lo and behold, she had been proven right! Not only that but...I filled in the blanks as she no doubt anticipated I would: Freon had poisoned her. That was why she had been so ill! So the mystery was solved and she could now get better, without any further intervention...
The next day or a few days later, she called again. Another crisis! The window had blown in during a bad rain storm and the wall had partially collapsed, bringing in dirt and plaster onto her desk and papers and worst of all her beloved computer and 4 in one printer-copier-scanner-I've forgotten the last function. (Now how the hell she had the money to purchase one of those I didn't even think to ask...but it certainly hadn't been bought a few years back when she did have money, as they weren't around then). So the unspoken problem was a ruined laptop. and printer...and who possessed an unused older Macintosh Powerbook she wasn't using at the time? Guess who.
So I offered to clean the hard drive and lend, no, give it to her...And did so...Until one night things started gelling, small things, like an inconsistency about something her cat did, that my cat does and I know her cat does not do. I noticed that things that happened to me suddenly happened to her soon thereafter but worse or better, depending on its nature...And the pieces began to fit together into a truly frightening scenario of a chaplain who had been conning me from day one, who had picked me out in the pssych ward as an easy mark, perhaps had read my chart and analyzed it and knew before we met that I was a choice target. I understood suddenly that Berrie was a con artist and a pathological liar, that nothing, nothing at all that she had told me could be relied upon to be the truth.
This was scary indeed, and I thought about what she'd been doing to other even more vulnerable people in her life, like a possibly mildly mentally retarded couple I'd met who also helped her out. And the other psych and oncology patients she had in her care. With a friend's encouragement, I went to the police, and they said nothing could be done about it, except that they would call her and sugggest that she return the computer and printer and not have anything to do with me again. This succeeded, but alas, I fear she had some influence on them as a chaplain without a psych history (that I know of, or that she would divulge,) I am sure she convinced them that I was merely paranoid and that she completely understood...
Well, that is only part of the saga, but it is the story of my life as a gullible. I have been taken and taken and taken time and again. For someone who is so often paranoid, I do trust awfully easily, don't I? I wonder how that can be. Thanks for listening! Do you get taken in as readily as I do? How do we protect ourselves? Is it just poor judgment? My ex-best friend knew Berrie was a con artist at her first and only minutes long meeting, as did Lynnie. I had no idea. I dunno how they knew, what triggered their suspicions and what I missed. Does this sound familiar to anybody?
A bit late, here are a few notes from our trip to DC and the National NAMI conference:
Friday, June 30, 2006
End of the tour: We took the Acela high-speed train from Stamford to Washington this morning and arrived at the Hilton around 2:30 p.m. only to find that our rooms were not ready and that it wasn’t even check in time. Waited until one room was ready then trekked upstairs to the Executive Towers (no less!) only to find out the A/C was broken and we had to switch rooms, and these were not yet ready either...
Long story short: we eventually got rooms a distance away from one another and quickly got ready to go out to meet Sara D for supper. Lynnie and Sal really seemed to enjoy Sara, and she them, so they had a good time, though I felt a little left out, as I often do in groups of any size...But then, I haven’t lived any sort of life that can be talked about or compared with others’ the way people do. You know, “Oh, yes, we did that! Did you enjoy such and such? or meet so and so?” No one knows what to talk about with me, at least not in a group and not when it is “social.” Not to mention the fact that I can’t add much to those sorts of conversations and so have nothing to say, don’t have the faintest idea what they are talking about most of the time.
2am:
I have wasted enough time surfing the internet and answering posts at The website I visit, and thinking of things to say on my blog, and I’m unable to stay awake another second, so I better stop here and go to sleep. TTFN.
Saturday July 1, 2006
Around noon:
Got up later than I wanted to but there was no reason not to, and had a leisurely cup of coffee in room waiting for Sal and Lynnie to get up and call me. We had breakfast in the Executive Lounge for free, then eventually, after mucho hassle, got printed and copied 100X of my 4-poem sheets for the book-signing. That took place around lunchtime, but was not well attended, though apparently a fair number of books had been sold the day before. That’s what counted, though we were a bit disappointed. Probably we should have done a presentation, but we didn’t want to when asked because not only were they not paying us to take off Friday through Sunday, but wanted us to pay for transportation plus a room at the Hilton, 2 of them, plus the banquet on Saturday night. All for the privilege of speaking to maybe 30-70 people? Sorry, we said, but no way! The only reason we said yes finally was because they told us we were getting an award, and thus they would pay for the trip, and by then they didn’t expect us to speak, though we’d have been okay with it at that point. The thing is, they don’t realize we have no extra money, that Lynnie has to earn a living and that I have only 600.00 a month from SSD and SSI together, while both the book and speaking tour have brought us in a net nothing!
Sunday July 2, in the morning:
Spent Saturday afternoon doing what? Hmmm, can’t remember now. Resting I think, then dressing quickly because I forgot what time the reception started. I wore my new orange and pink-red skirt and pink-red silk blouse with heels and felt spiffy, though not good, I rarely feel good in my clothes. But I figured I looked okay according to others, since Lynnie and Sal didn’t tell me otherwise...and I followed Lynnie into the Presidents Room where the reception hour was being held for about 40 or so invited people (2500 or so came to the conference overall).
There I froze. Didn’t know what to do -- with my hands, my eyes, my voice, my feet, with me...All the noise, all the motion and color, all the confusion...though for all that it hadn’t gotten very crowded at the time, I could tell that simply by looking up and counting...But it was so hard even to look up without feeling assaulted and to look anyone in the eye would have cost me more than I could bear to lose. I know that S, who used to be the director of NAMI-CT came up and introduced herself and tried to get me to talk, but she didn’t succeed and eventually found an excuse to move away. No wonder! And I just couldn’t take it anyway. Finally, Lynnie gave me an excuse to get out and I took it, after swallowing the Haldol and the Ativan that I hadn’t taken before then going back to the room. We agreed that I wouldn’t go to the banquet but would order room service and wait for her to come get me when the awards were being given out.
All afternoon, I’d worked on a Thank You speech to give that night, to be as our publicist said, “academy award length” i.e. very short, but I had refused to show it or read it to Lynnie. She had been miffed...But I held out and never did give in. She couldn’t figure out why. Well, when we were called to come up to the stage for the award, Lynnie gave her speech first, then I whispered to her not to go anywhere as I needed her near me. She agreed, thinking I was afraid or something. Then I read, well, the speech that I posted on July 3 or so. She was shocked, and pleased, I think, though it made her weep in public (she isn't ashamed to do that, any more than I am to sleep in public!). At that point I think the audience started clapping and rose to their feet, but I could barely tell, what with the lights and the roaring in my ears...
It embarrasses me to explain this, though I suppose it is very common, at least in its present manifestation: I see myself as fat, even though I "know" (insofar as what size 0 and extra small tell me) that I am thin. I hate to look at myself in any mirror, because the reflection seems to show me looking as obese as I was when on too much Zyprexa...and the thing is, I HATE myself for it, I can't stop thinking about it, and it torments me endlessly to the point that I often refuse to go out to eat with other people or if I do, only pick at food or pretend I'm not hungry, (though I'll eat fine once at home alone...). I am actually proud of myself for having eaten ice cream with friends this week, because I almost balked and had only a diet coke...Felt like I’d somehow expose my shameful concern and look weird if I didn’t join in though.
What is even weirder is that when I actually was obese, I saw myself as thin! Truly. No one knew this except one doctor in the hospital, who made fun of me for it, mocking me by calling me "Tiny". When I weighed over 180 lbs at 5'3" I both felt and thought I "looked" thin in the mirror, and ONLY the scale told me otherwise, and the number size of my clothes (and also photos). I hated myself then, too, but mostly because of the purely intellectual knowledge that I wore an extra large size, not because I actually saw how fat I really was.
Ah, self-hate...How to explain it when I scarely understand it myself? I suppose it comes from a guilt I’ve felt nearly from birth, arising indirectly from the message implied in being told that my twin sister, the second and a little smaller until adulthood, was the frail one who had to stay in the incubator two weeks longer than I ...And therefore needed more attention and care than I did. I always felt I was not allowed to show any emotions, which ended up with my not feeling them, because I was labeled the "stoic one." I had to take care of Lynnie, who had temper tantrums and was a crybaby etc. If I evinced any strong feeling, I was simply called "Sarah Bernhardt" and told I was acting dramatic.
But back to self-hate: the possible genesis of it may have been due to the fact that I felt it was obvious that I was to blame for Lynnie's apparent frailty. Insofar as I, being the bigger twin, "ate more" than she in the womb, by extension, I ate more than my share...Which made me a glutton and selfish even then and therefore evil in nature at birth. None of this was said by anyone, mind you. It was purely a conclusion I came to on my own. But I've always had a sense that I had to do good and be extra good, simply to atone for being born evil, for which I rightly hate myself. My evil is so terrible, moreover, that it pollutes people who come near me, the worse so for those who don't believe in it.
That's why I can't not hate myself. Because if I don't keep my evil in check, I could contaminate and destroy the world. It is bad enough that the people near me suffer from their insistence that they are protected, or not in need of protection. They are the most vulnerable! It is only those who stay away because they hate me, or are afraid of me and the power of my evil, who remain safe. And yet, because I am at least apparently human (I say "apparently" deliberately), I also feel lonely and scared when too many people stay away, even though I know this is right and good and as it must be. Even here I sometimes worry I might virtually contaminate people...
So it goes. on and on. I'm working on it, slowly, but it's hard, because I don't think it is wrong or erroneous to think this way...
Thanks for letting me talk. There's much more that goes into it, but this is a start.
We just got back from the national NAMI Convention in Washington DC (where Schizophrenia.com had a booth, and I didn't know it till it was too late, and I couldn't find out who was there...alas). We took the high speed Amtrak train there and were treated to the banquet and given the 2006 Literature Award. Actually, it became too much for me and in truth I didn't make it through the cocktails cum reception hour, much less the banquet. But Lynnie came and got me when the awards were starting and I went to that part of the evening (fifteen minutes of it at any rate). The following is my "acceptance" speech, such as it was:
____
You know how people sometimes ask whom you most admire in the world and you’re suddenly at a loss and have to pause to ponder the list of usual suspects? Mother Theresa...Nelson Mandela.... The problem’s familiar. We’ve all been faced with it.
Well, I’ve stopped looking so far afield. I’ve come to realize that the person I really think the most of is much closer to home, so close in fact that I know her intimately; she even has the same rare blood type and DNA.
Who is my hero?
She is my younger-by-five-minutes but oh so large in my esteem twin sister, known to the world as Dr Carolyn Spiro, but to me forever as Lynnie.
One of the more surprising discoveries I made as we wrote our book, [Divided Minds: Twin sisters and their Journey through Schizophrenia; St Martins Press, 2005] was learning how much thought and preparation Lynnie puts into each therapeutic hour. I had never until then understood how much real work it takes for a good shrink to do therapy, nor what a brilliant, amazingly insightful psychiatrist Lynnie truly is, compassionate to a fault.
This is by all reports. But I know so too, personally, because that’s how she’s been to me as a sister. I owe her – but what does one owe a person in terms of something that could one day be repaid – when she gives you hope, time after time, the hope that keeps you going when you yourself are empty and running on fumes? Who teaches you techniques to deal with the hard times, so you learn to cope instead of just flail? And who keeps you alive by dint of her hope and faith when your own well runs completely dry.
I’m doing my best tonight and I want to say this here in front of all of you because you’ll know how much it means:
Thank you, Lynnie, thank you – for the hope, and the faith, and the love with which you carried me through years of darkness, putting up with my tirades and paranoia, my depression and psychosis until I could stand again in the sunlight, no longer needing to be carried. I am grateful beyond words. Thank you for being my twin.
Love,
Moi.
