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Last time I put up this reprint of an article I wrote for the Hartford Courant some years ago, I was told I should reprint it every two years. The recent events at Northern Illinois University and at Virginia Tech a year ago make that advice all too necessary and prescient. I believe you can glean the events that sparked this article from the article itself.
TWICE-TOLD TALES: NO HAPPY ENDINGS -- 1998
by Pamela Spiro Wagner
We may never know, or at least never fully comprehend, what short-circuited synapse, what blip of corrupted information or neurochemical glitch inside the brain drove Russell Weston to gun down two Capitol police officers this July, or Michael Laudor to murder his fiancee only weeks earlier, and with her his unborn child. Laudor was a Yale Law School graduate and activist on behalf of the mentally ill, and seems to be a man for whom adjectives like “brilliant” and “charismatic” crop up as reliably as Homeric epithets. Weston, in contrast, seems to have been largely unemployed and undistinguished, except as a loner with certain bizarre beliefs. Both men, long diagnosed with schizophrenia, had stopped taking medication. It also seems likely, at least in Michael Laudor’s case, that if he’d had adequate medication levels in his blood, Caroline Costello would be alive today, and Laudor a free man.
But why would someone so prodigiously intelligent, with such a promising future, stop taking the pills that were so essential to his well-being and sanity? Why would anyone? For Laudor, it wasn’t from lack of “insight,” as the shrinks like to say; by 1995, he was speaking openly about having schizophrenia, even in an interview with the New York Times. He knew he was ill and must have known, intellectually at least, the risks he was taking.
The information about Weston is sketchy at best, but it is clear that he had little effective follow-up after his discharge from a Montana state hospital.
I can’t speak for Laudor, much less for Weston, but after more than 20 years of struggling with schizophrenia, I’ve learned that the waxing or waning of symptoms is often as unpredictable to patients as to physicians. Relapses are usually caused by many factors but my guess is that Laudor’s relapse was induced by his success. Easily overwhelmed by stimulation or ordinary stress, as are many people with schizophrenia, and not recognizing his limits, or not accepting them, he may have over-extended himself, with tragic consequences.
Hold it! I can hear the objection: Most people occasionally over-extend themselves, yet they don’t commit murder.
But by at least one criterion, Michael Laudor and Russell Weston are not “most people”: most people don’t suffer from schizophrenia.
Although it doesn’t seem that Weston had any opportunity to try the newest medications, Laudor was taking risperidone, one of the new antipsychotic “wonder drugs.” He appeared normal, more or less unimpaired. But because he was so competent, people may have forgotten the shadow cast over his life by an incurable mental illness that even the best drugs treat imperfectly.
Schizophrenia is a brain disease, as anyone who is up to date will tell you. But the brain is the seat of the mind and the mind the source of one’s self and of all that makes us human. To suggest that such an illness, with its profound impact on a person’s mind and sense of self, is a biochemical imbalance no more troublesome than diabetes, is to invite cruel, though unintended and unforeseen, consequences. Russell Weston Jr. coped largely by keeping to himself. But the same was not true for Michael Laudor, who seemed to be outgoing by nature and to enjoy the spotlight. But because effectively treated schizophrenia can be controlled, and therefore concealed, the impact of the disability it inflicts is frequently discounted.
Imagine, if you can, that you have schizophrenia, as more than 2.5 million Americans do. The older “typical” medications, most of them similar to Thorazine, are not only less effective, but often produce side effects like the infamous “Thorazine shuffle,” as well as tremor, dry mouth, weight gain, an excruciating physical restlessness, and for some, the disfiguring disorder known as tardive dyskinesia. I suspect that Weston, like many, found this “cure” worse than the disease, if he believed he was ill at all.
But imagine that after years of illness, a new medication alleviates the worst of your symptoms, as it seems to have for Laudor. If you’ve always been a high achiever, you push ahead. Soon there’s a lucrative book proposal, a million-dollar-plus movie deal. You’ve gotten engaged, your fiancee is pregnant and you’re being hailed as a role model for all mentally ill people, a source of inspiration and hope. And yes, it is a thrill, it’s huge, it’s exciting and you would do it all, if only you could. . .
But the same miracle drug that helps you function makes you tire easily, gain weight and sleep more than you’d like. Maybe you feel you can’t ask for a breather because if others cope with the pressure, you should be able to as well and if you admit to being less than capable, you’ll disappoint people who are counting on you. Wondering how you could better manage to live up to the demands success has imposed, it occurs to you -- as it will at some point to most people with schizophrenia -- that if you temporarily stop taking your medication, maybe you could catch up, get some work done. At first, you cut back on your pills just a little, but it snowballs until you’re no longer taking any. Whether you’re Michael Laudor or Russell Weston Jr. the stage at this point is set for disaster.
If something can be learned from these tragedies to help avert a “next time,” it may lie, first, in acknowledging the often agonizing side effects of standard medications, which are inexpensive and therefore the only option for most cash-strapped state hospitals. Then society needs to acknowledge that if the side effects of medication feel intolerable, the likelihood is enormous that patients -- with or without “insight” -- will stop taking them, and be reluctant to return to treating physicians for fear of being forced to do so.
And finally to recognize the terrible irony of Laudor’s situation. While the “public” celebrated him as a shining exemplar of what a person with schizophrenia can achieve, it seems simultaneously to have treated him as if he no longer suffered from mental illness at all, and certainly not from the serious but less visible vulnerabilities that come with the package. In short, he was acceptable as a “schizophrenia poster boy,” but only so long as he wasn’t noticeably schizophrenic!
Russell Weston Jr. and Michael Laudor have a chronic illness that by its nature can obscure one’s judgment, including the ability to evaluate one’s own mental health. Sane as he apparently seemed until a few weeks ago, Laudor was not “in recovery,” he was “in treatment.” Weston was as isolated by his illness as by Montana’s wilderness.
My sense, and my sorrow, is that both might have been better served by someone who more vigilantly monitored the build-up of stresses, both external and internal, knowing how schizophrenia works, how the sufferer is often the last to recognize when enough is enough.
Argh, my sleep is going from bad to worse as I labor to finish The Decorated Betsy and also get final work done on the poetry book. I have decided that the title may change after all, since "Mathematician" has nothing to do with me or schizophrenia and neither do "Prayers" so the original title did not exactly evoke images in the mind's eye of what it might be about. But as to that, I have to get the editors and publisher to agree to it. I am thinking about a line from a poem about recovery that is in the book, which goes, in part We Mad Climb Shaky Ladders...I think it has the ring of something interesting. It isn't your run of the mill title in any event, but they will probably go for the alternative I suggested, Eating the Earth, the title of one of the early poems in the book, one of my favorites but a title I've often played with and so unexciting and less evocative to me.
I was speaking of sleep: last night I stayed up all night, and worked straight through from 10pm till 6:30am doing nothing but painting Betsy (which I am told again should have a better title, this time by Karen, but who made her the expert I surely don't know...What else I should call the sculpture I have no idea. Suggestions, anyone?). I did get so much done, with a bent brush made from a metal "GUM" gum stimulator wire with the tip of a brush so that I can paint around a corner, that I am almost finished, but for a few difficult patches left (difficult because contortions are necessary to get to them!) The last thing I need to do is to cover a balloon with papier-mâché and add some heavy duty wire, so that she is shown to be holding a balloon on some "string" -- the reason for her hands in that particular position. At first she was going to be holding a lollipop and a cigarette, but I thought better of the cig and decided for the balloon instead.
As I said, however, my sleep...Yes, indeed, I was trying to tell you about my sleep patterns, well, I cannot sleep more than 4-5 hours a night. Or else I will not, in so far as I refuse to take the second dose of Xyrem for fear of inducing a migraine, from which I have suffered for three weeks straight, up until a monster one last Tuesday, when it seemed to break. But I also haven't let it come back, by carefully not sleeping or oversleeping and by making sure I remain upright most of the day (my headaches are often triggered by warmth and sleeping, oversleeping in particular and standing and walking around sometimes relieves the pain... though this past month nothing helped except Imitrex and/or Ibuprofen, and even so I was in pain more often than not. Worse, when I called my Primary Care doc, I was told he would be out all week and to call back next week; was not offered a covering doctor even! I told the nurse that Dr C could go jump in a lake...I think she was taken aback but I know exactly what was going on. He was there, he just didn't want to be bothered with me, because there is this thing going on with all the DOs in town, THey all hate and persecute me..and he himself has a DO degree not an MD.
Moving onto other people in my life: Lynn is in a decline, probably terminal, though I have the sense that she is voluntarily giving up. Whatever the case, she is now bedridden and stays in a hospital bed in the living room all day, with Cy sleeping in a trundle bed next to her. According to Leila, she knows people for the most part, but thinks she is on a plane or train, going off on a trip to parts unknown...which of course she is in every sense but the most literal. I have not been able to see her for a week and a few days, due to any number of things, but mostly because she has not been up to it, and too many people are staying over there, too many people to wear her out and keep me from being with her. But I hope to go over tomorrow, at least for a short time and say hello.
Joe, too, has had a change. His doctor, the fool, told him that he "will become locked in -- ie unable to move or communicate -- in 17 months, and that he needed to plan for that eventuality. Well, that is absurd, the one thing I know about ALS is that it is completely unpredictable, Joe may become locked in eventuallly, but NO ONE can say when that will be, 6 months from now or 24 or 36 or ten years from now, if he is lucky! THe doc is a stupid stupid cruel man to have made such a ridiculous and hopeless prediction, and it was wholly unecessary. The one result that it did produce that may have been positive (though actually negative) was to have Joe consider what he wanted to have done if/when he becomes locked in, and truly unable to communicate ( or minimally able to, say, by blinking an eyelid only). He told me and his lawyer and cousin that he now wants to be allowed to die when that stage is reached. He felt that he risks being in pain or discomfort too often now, and without the means to relieve it; what would happen when he was locked in and no one knew at all that he was in pain? It seemed to him an intolerable probability...So even Joe will not be with us forever...Indeed, if the disease progresses at the same rate that it has been, he will not be here a great deal longer. To lose both friends is going to be so hard...And I don't know who will ever replace them. Surely Karen can never take anyone's place!
Now for the one bright spot in the past week: I saw a lawyer about the book contract and it turns out that I am allowed to have my own special needs trust formed for me and to put into it anything I earn from the book OR from jewelry or artwork sales, and to have a trustee then dole it out in the form of "special needs" such as art supplies or car repairs, or a car or even, I believe, a vacation, if I were so inclined, though a vacation is the very last thing I would ever want to do. This was perfect, the absolutely perfect solution to my problem, and there it was, waiting for me all the time and I never knew it. It was all legal and legitimate and no one had a right to attach it or take it from me, no matter what, until I died, when the state would then have first dibs on whatever was left. But then, who would care? I surely owed them that much, having gotten so much from them over the years!
Welp, gotta run, I want to do a little more on Betsy before the night is up and I have to striaghten out the apartment, in case I have a visitor tomorrow (the mother of an old friend from childhood). TTFN. I hope to take a picture of the to all intents and purposes finished Betsy - tomorrow when the light is better. I hope to post it then or as soon as I can, along with a few new pictures of jewelry.
This is vintage Kay Redfield Jamison, of "An Unquiet Mind" fame, reflecting on her life with manic depressive illness.(Jamison, for those who do not know, is a professor of psychiatry at Johns Hopkins University and also the author of the aforementioned memoir about her mental illlness) I found the lecture beautifully done and very accurate. I hope everyone has a chance to listen. It is about 3o minutes long.
or if the video above doesn't work try this link:
This post is about sleep disorders. The video covers insomnia and sleep phase disorders so I will not discuss those here, but will concentrate on Sleep Apnea, Narcolepsy and several other sleep disorders. This is not a comprehensive list. But I wanted to discuss the major problems associated with sleep because they are more common both in psychiatric patients and in the general population than is perhaps widely understood.
First of all, let’s discuss SLEEP APNEA, which is when a person has brief periods during the night when they stop breathing. Often they are loud snorers and an episode may be detected when the snoring is interrupted. Sleep apnea sufferers frequently do not get enough oxygen at night. There are two types of the disorder. Obstructive and central sleep apnea.
In Obstructive Sleep Apnea, or OSA, which is the most common type, there is an obstruction of some sort in the throat during sleep and a subsequent narrowing of the upper airway. The obstruction is usually excess tissue and might be a large tongue or large tonsils but usually includes the relaxation and collapsing of muscles during sleep. Air pushed past this excess tissue is what produces the sound of snoring. This sort of apnea may be due to inherent physical characteristics, excess weight or drinking alcohol before sleep.
Central Sleep Apnea or CSA is caused by a delay in the signal from the brain telling you to breathe. It may be due to a neuromuscular cause but there may be other sources of the problem. It is not as common as OSA and much more difficult to diagnose as there is no tell-tale snoring.
In both OSA and CSA a person wakes up frequently, sometimes 100s of times a night, in order to breathe. These awakenings are so brief that usually there is no memory of them, though the sufferer may find him or herself fatigued or sleepy during the day. In fact, daytime sleepiness is often the presenting symptom bringing them to the attention of a physician.
Some symptoms of Obstructive Sleep Apnea are:
. loud snoring
. morning headaches
. chest pulls in during sleep in young children
. high blood pressure
. overweight, but not always
. a dry mouth upon awakening
. difficulty concentrating
. excessive perspiring during sleep
. reduced libido
. frequent trips to the bath room during the night
. restless sleep
. rapid weight gain
OSA can be lifethreatening and the risks of it going undiagnosed include stroke, heart attack, irregular heartbeat, impotence, high BP, and heart disease. Daytime sleepiness can increase the risk for accidents and lower productivity as well as put a strain on interpersonal relationships. Symptoms may be mild, moderate or severe.
A sleep test known as a polysomnogram is done to diagnose sleep apnea, which usually requires an overnight stay in a sleep lab. Sometimes you can test at home with a computerized polysomnograph that you return to the Sleep Center in the morning. The sleep lab machines monitor brain waves, muscle tension, eye movement, respiration, oxygen levels in the blood, with audio monitoring for snoring, gasping etc. (*By the way, Joe had this test done because of his ALS, to see how his oxygen levels were and how well he was breathing at night. He probably had central sleep apnea, due to the motor neuron degeneration involved in Lou Gehrig’s disease, but they knew this going in.)
Mild OSA can be treated behaviorally, by losing weight or sleeping on one’s side. Oral mouth devices can help keep the airway open and reduce snoring by 1) bringing the jaw forward, 2) elevating the soft palate, or 3) retaining the tongue from falling back in the airway and stopping breathing. Note that OSA often gets worse as you age and so should not be ignored or taken lightly.
Moderate and severe apnea sufferers usually use a C-PAP or even a BiPAP machine. C-PAP stands for Continuous Positive Air Pressure, and the machine blows a continuous stream of air into the nose and/or mouth, keeping the airway open. In more severe cases, the BiLevel-PAP machine is used with a higher pressure for “in breaths” and a lower pressure for “out breaths.” (*BiPAP was was prescribed for Joe’s severe CSA.)
In some cases of facial deformities or very large tongue or tonsils, surgery may be the only solution. But usually this is a last resort.
A note about snoring: much snoring is benign, but “All snorers have an partial obstruction of the upper airway. Many habitual snorers have complete episodes of upper airway obstruction where the airway is completely blocked for a period of time, usually 10 seconds or longer. This silence is usually followed by snorts and gasps as the individual fights to take a breath. When an individual snores so loudly that it disturbs others, obstructive sleep apnea is almost certain to be present.” (sleepnet.com)
NARCOLEPSY – Information cribbed from the NINDS.NIH.GOV site with additions from yours truly drawn from personal experience.
What is Narcolepsy?
Narcolepsy is a chronic neurological disorder caused by the brain's inability to regulate sleep-wake cycles normally. At various times throughout the day, people with narcolepsy experience fleeting urges to sleep. If the urge becomes overwhelming, individuals will fall asleep for periods lasting from a few seconds to several minutes. In rare cases, some people may remain asleep for an hour or longer. (*Pam: it really depends on where one falls asleep. If you can sleep in a bed, you might in fact sleep for an hour or more. If you fall asleep in a chair, a few minutes or a few seconds might suffice but only for a short time. In the case of the chair, you will fall asleep again in a short while, because in fact you have not slept “enough.”) In addition to excessive daytime sleepiness (EDS), three other major symptoms frequently characterize narcolepsy: cataplexy, or the sudden loss of voluntary muscle tone; vivid hallucinations during sleep onset or upon awakening (*Pam:I found that I would have vivid visual and dreamlike hallucinations at any time of the day, whether I felt sleepy or not – all this is in past tense because of Xyrem. See below); and brief episodes of total paralysis at the beginning or end of sleep. Narcolepsy is not definitively diagnosed in most patients until 10 to 15 years after the first symptoms appear. The cause of narcolepsy remains unknown. It is likely that narcolepsy involves multiple factors interacting to cause neurological dysfunction and sleep disturbances.
Is there any treatment?
There is no cure for narcolepsy. In 1999, after successful clinical trial results, the FDA approved a drug called modafinil for the treatment of EDS. (*Pam: Provigil seems to be more effective for normal people than for most of the people I know with narcolepsy. Though one of them is happy with it, Another takes a whole cocktail of stimulants just to get through the day...I myself still take the old stand-by of methylphenidate.) Two classes of antidepressant drugs have proved effective in controlling cataplexy in many patients: tricyclics (including imipramine, desipramine, clomipramine, and protriptyline) and selective serotonin reuptake inhibitors (including fluoxetine and sertraline). Drug therapy should be supplemented by behavioral strategies. For example, many people with narcolepsy take short, regularly scheduled naps at times when they tend to feel sleepiest. Improving the quality of nighttime sleep can combat EDS and help relieve persistent feelings of fatigue. Among the most important common-sense measures people with narcolepsy can take to enhance sleep quality are actions such as maintaining a regular sleep schedule, and avoiding alcohol and caffeine-containing beverages before bedtime.
On July 17, 2002, the FDA approved Xyrem (sodium oxybate or gamma hydroxybutyrate, also known as GHB) for treating people with narcolepsy who experience episodes of cataplexy. (*Pam:This has been the single most effective anti-narcolepsy drug I’ve taken. I have halved my Ritalin intake and often take less than that. I no longer have REM episodes while I am awake, that is, visual hallucinations that are really dream states intruding into waking hours. I don’t need to take 3-4 unwanted naps a day, usually if I take the methylphenidate on time I can make it through the day without them, though I do regularly get sleepy... But all in all, it has improved my life immeasurably.) Due to safety concerns associated with the use of this drug, the distribution of Xyrem is tightly restricted.
What is the prognosis?
None of the currently available medications enables people with narcolepsy to consistently maintain a fully normal state of alertness. But EDS and cataplexy, the most disabling symptoms of the disorder, can be controlled in most patients with drug treatment. Often the treatment regimen is modified as symptoms change. Whatever the age of onset, patients find that the symptoms tend to get worse over the two to three decades after the first symptoms appear. Many older patients find that some daytime symptoms decrease in severity after age 60.
Now here is what Sleepnet.com said about “narcolepsy in depth”, since it adds to the info from NINDS:
Narcolepsy in Depth
Narcolepsy is a disabling disorder of sleep regulation that affects the control of sleep and wakefulness. It may be described as an intrusion of the dream sleep (called REM or rapid eye movement) into the waking state. Symptoms generally begin between the ages of 15 and 30. The four classic symptoms of the disorder are excessive daytime sleepiness; cataplexy (sudden, brief episodes of muscle weakness or paralysis brought on by strong emotions such as laughter, anger, surprise or anticipation); sleep paralysis (paralysis upon falling asleep or waking up); and hypnagogic hallucinations (vivid dreamlike images that occur at sleep onset). Disturbed nighttime sleep, including tossing and turning in bed, leg jerks, nightmares, and frequent awakenings, may also occur. The development, number and severity of symptoms vary widely among individuals with the disorder. There appears to be an important genetic component to the disorder as well.
Excessive sleepiness is usually the first symptom of narcolepsy. Patients with the disorder experience irresistible sleep attacks, throughout the day, which can last for 30 seconds to more than 30 minutes, regardless of the amount or quality of prior nighttime sleep. These attacks result in episodes of sleep at work and social events, while eating, talking and driving, and in other similarly inappropriate occasions. Although narcolepsy is not a rare disorder, it is often misdiagnosed or diagnosed only years after symptoms first appear. Early diagnosis and treatment, however, are important to the physical and mental well-being of the affected individual.
TREATMENT: There is no cure for narcolepsy; however, the symptoms can be controlled with behavioral and medical therapy. The excessive daytime sleepiness may be treated with stimulant drugs, while cataplexy and other REM-sleep symptoms may be treated with antidepressant medications. At best, medications will reduce the symptoms, but will not alleviate them entirely. Also, some medications may have side effects. Basic lifestyle adjustments such as keeping a good sleep schedule, improving diet, increasing exercise and avoiding "exciting" situations may also help to reduce the effects of excessive daytime sleepiness and cataplexy.
PROGNOSIS: Although narcolepsy is a life-long condition, most individuals with the disorder enjoy a near-normal lifestyle with adequate medication and support from teachers, employers, and families. If not properly diagnosed and treated, narcolepsy may have a devastating impact on the life of the affected individual, causing social, psychological, and financial difficulties.
Other Sleep Disorders
A Night Terror, also known as pavor nocturnus, is a parasomnia sleep disorder characterized by extreme terror and a temporary inability to regain full consciousness. The subject wakes abruptly from slow-wave sleep, usually in the first third of the night, with waking usually accompanied by gasping, moaning, or screaming. It is often impossible to fully awaken the person, and after the episode he or she normally settles back to sleep without waking. In the morning, the person usually will not recall the experience. Night terrors typically occur during non-rapid eye movement sleep.
Night terrors are not dreams. The lack of a dream itself leaves those awakened from a night terror in a state of disorientation much more severe than that caused by a normal nightmare. This can include a short period of amnesia during which the subjects may be unable to recall their names, locations, ages, or any other identifying features of themselves.
Night terrors can occur rarely or as often as every night, and may be associated with physical injury to the patient in the most severe cases. If you are concerned, consult a sleep specialist,
Sleepwalking, or somnambulism, is by definition when a person carries out normal waking activities during sleep. It usually occurs earlier in the night than REM or dreaming sleep and is not in fact associated with a dream, contrary to popular belief. In fact, while it occurs most commonly with slow wave sleep it can happen in any stage of non-REM sleep. Because children and young adults spend far more time, up to 25%, in SWS than older adults, it may account for why sleepwalking is more common in the young than as we age. About 18% of the population are prone to sleepwalking, with it more prevalent in boys than girls and the highest incidence at age 11-12.
Sleepwalkers do not remember their somnambulistic behaviors and so most episodes are forgotten unless recorded by an onlooker or sleep lab.
A large range of behaviors may be indulged in during somnambulism, from standing up and walking to murder (the last has always been controversial) but some people will eat while they are asleep and wake in the morning only to find empty food containers and no memory of having eaten. Others may injure themselves because they trip and fall while walking through a darkened bedroom. Both hypnosis and medications have proved helpful.
Four speakers in two hour video on the following topics: : Postpartum Depression in Pediatric Practices: Opportunity and Challenges, The Menopausal Transition, Sex Steroids and Depression, Cultural Issues Related to Diagnosis and Treatment of Depression for Women, and Perspectives on Women and Depression from the Community.
I have not yet seen these all the way through but they are said to be worth watching, if you have 2 hours to spare...
I’ve been working, finally, on The Decorated Betsy, which I believe I told most of you was the next large papier-mâché sculpture I’d planned on doing many months ago. I started it right after the fight with Karen and subsequent “separation” from her, one I hoped would be permanent.
I built her out of found materials, the only boughten elements having been one medium-size kitchen wastebasket and a very flimsy hollow plastic chair. Every other part of the skeleton, I either had on hand or got from someone else who was throwing it away. The rest was papier-mâché. I had just gotten to the painting stage (see below) when I got a call from, guess who—yeah, Karen, wanting to make up and be friends again. I didn’t feel I could rightly say, F— off, get out of my life, so I accepted her offer but vowed not to fall back into dependency again. I invited her up to see the sculpture – she was very impressed – and then we went out to a restaurant for a soda and to catch each other up on the past 2 weeks (not that there was much I cared to share).
As we left, she mentioned that she and Gary were attending an art show that evening at a gallery they frequented every month or so, knowing the manager and many of the artists and patrons. She suggested I take a picture of Betsy and bring one of Yurtle and wear some of my jewelry so she could introduce me to Francesca, the manager, and see if she was encouraging.
For some reason, though I’d refused many other times, not having much energy that late in the day and fearing the cocktail party atmosphere of an art show (Karen and Gary like eating the free supper of finger food au d’oeuvres as much as seeing the art), this time I said, “Okay, I’ll try it.”
On the way downtown, Karen keyed me in on what to say to Francesca when showing her the pictures, how not to simply clam up and say nothing but to add as much to the simple story behind the pictures as I could, maybe talking about how I went to medical school, or telling her how I did the sculptures etc. She gave me some ideas of what sorts of things to say, but I was sure I would forget the moment Francesca asked me a question.
When we got there the show was already in full swing and the room was crowded, the food not as plentiful as “usual” according to Karen, who was disappointed. I found it difficult to make myself lean over the table to reach for anything, the act making me too vulnerable and conspicuous, so I mostly contented myself with one piece of some egg-roll thingie and gave up eating anything else. I mostly stood near Karen and hoped nobody touched me going past me to the tables as contact felt like an electrical discharge and gave me a shock.
Finally Karen spied Francesca and dragged me across the room to meet her. She was a short, white-blond-haired but not elderly woman who, after Karen introduced me as a writer and a papier maché artist and jewelry maker, seemed very hospitable and open to looking at the pictures I’d brought. Fumbling with the pictures, I explained how I’d been to medical school once a long time ago and had learned anatomy, so when it came time to fleshing out the mailing tube skeleton of my sculpture, I knew how to make the newspaper muscles and then attach them one by one to the scaffolding of cardboard “bones.” Then I managed to get the pictures out of my purse and gave them to her.
She smiled when she the half-painted Betsy, and she became even more enthusiastic when she saw Yurtle the Turtle. She asked me to apply for membership in the gallery collective, and said to send my application directly to her, not to the collective panel. She seemed eager to hear from me and it was very flattering. Little does she know that I only have three pieces (including the Llama), and that I don’t have the $250 it would cost to join the collective once I had more sculptures to show. I realized later that of course I have plenty of jewelry to show her, to make up the 7 extra pieces I’d need for my application. Since I am both a papier-mâché artist and a jewelry maker, I naturally could enter both kinds of art in the application process (and they accept both). Much more difficult is the commitment involved in the cooperative: once more there is fundraising and committee work... I might just apply, for the sake of seeing if they like my stuff, even though I have no financial ability to join...
I’d pay the $25 application fee after all, I just would like to have an evaluation of my work to date. But the fact of the matter is, I can’t sell my work anyway, so what use is it to show in a gallery where the point is to sell what I can at the highest price? Well, of course there is a use: to have people see it and know what I do, and maybe ask for more. Then they could arrange to barter for it privately. All I can and want to do is barter, and no gallery is going to allow that!
In fact, an Elderlaw attorney I have arranged to talk with about my book contract has intimated that I can in fact earn some money, and though I may have to give up some of my benefits, it would not be dollar for dollar and not my medical benefits either. I will call her Monday and see what I can find out.
All of this is a nice problem to have, I suppose, and completely unexpected. I can’t handle any more commitments, though, and do not want to deal with actually showing or selling my artwork right now, what with the difficulties selling or getting royalties from my poetry book and how that can be handled. I don’t even know what to do there, let alone if I do sell a large sculpture.
As I said, it is a problem worth having. But one the Elderlaw attorneys I consulted had no idea what the answers to my questions are, he’d never run into them before. Odd, and they are the experts!
If the above doesn't screw up the browser, I'm hoping it will provide a very interesting set of videos that explore the brain and consciousness. I will put it up and see what happens in the next few days. The last time I embedded a Youtube video, everything went haywire, so I may have to simply give you all the URL if this doesn't work out. I'll wait and see.
Although I was hospitalized several times in the seventies, I always returned to school or to home and to doing whatever it was I had been occupied with before the hospital stay. Even after I left med school, following a seven week hospitalization, I was released to my own apartment and the assumption that I would “do my own thing.” It was not until the 1980’s that I came completely under the hand of public treatment and the day programs that not only ordered my days but also ordered my mind in ways that were not always helpful or healthy.
Let me explain one critical aspect of psychiatric treatment in the 60’s, 70’s and 80’s: you were supposed to accept that you were ill and get better, but you were never to ask what was wrong with you. No one would tell you if you did ask, but it was understood that you simply would not. The mere desire to know your diagnosis was treated as if it were outrageous, prurient curiosity. Who were you to know the name of your illness? What business was it of yours? No, a patient was expected simply to “get better, never knowing what was the matter with him or her. Sounds crazy, yet that was how it was. They knew, they knew something, and you were not allowed to.
The other important aspect of treatment at the time was the understanding that having an illness, being ill, had a cause, a personal cause, i.e. someone was at fault. By the time I fell into the hands of the System, this was no longer the “schizophrenogenic mother” but the patient him or herself who was t5o blame. If the victim could be at fault, suddenly the picture changed: in getting better, you were expected not to reap "secondary gains" from having been ill, as if there were benefits from illness and that you had chosen one over the other as if a college course or career.
Such psychodynamic theories of “mental” illness, the notion that our own frustrated desires and fantasies caused illness, implied that somehow if we delved deep enough into our own minds and histories we would uncover the key to why we “made ourselves sick.” That was the thought; in practice it evolved a therapy of blame and accusation (“you wanted to get sick so you’d get more attention” “you don’t try to stay well because you like being taken care of”) and of behavior modification called by a dozen other names (“If you don’t get rid of the single Q-tip in your wastebasket, your room will fail inspection and you will be kicked out of the halfway house to the streets, even though it is winter and the shelters are full...”).
Yes, there were other schools of thought. Psychoanalysis was still in use then, even in the treatment of schizophrenia, as I knew because a friend of mine was being treated by an analyst. Indeed, this doctor was the first person to tell me, through this friend, that I too had schizophrenia. At the time, though, all I knew was that I had anorexia, which was obvious, to me at any rate, given my reluctance to eat and my 85 pound body. What I didn’t yet understand was that because of this I had been diagnosed by some as having a borderline personality disorder. (I believe anorexia was by definition grouped in this category at the time.) Not everyone agreed, clearly, and so it was a subject of some dispute whether I “was” borderline or schizophrenic. As Lynnie told me later, there was absolutely no reason why I could not have had both disorders – neither one ruled out the other. But as a line was eventually drawn between borderline and anorexia, it seemed that I did not “have” a borderline personality after all (rather magically, they claimed, I’d outgrown it...). I did have schizophrenia, as a doctor told me flat out one day in the, yes, early 80s in a university-run hospital. I was surprised even then by his candor. It was not common at all. I’d never before had anyone speak to me so frankly about mental illness. I chalked it up to his having been from India and so not in tune with the indirect ways of American psychiatry. I found it a profound relief to have someone speak plainly, not beat around the bush. However, it was in fact still the 80s and when I was discharged I returned to the same half-way house as before, where diagnoses were never spoken and supposed never to be known.
My friend Joe always speaks of a sense of self, how it is essential to a general state of mental healthiness. I don’t know how I appeared in those days, withdrawn, dressed invariably in a uniform of navy blue denim jumpers, avoiding all eye contact– did I seem to others to have a mind of my own, desires and wishes and opinions and so forth? I don't have any idea. In truth, I did everything by virtue of monitoring the words and body-messages given out by all around me, and tailoring everything I said to what I thought they expected of me. I had no mind of my own, except insofar as I had “decided” (thought I had to) to do what they wanted me to. Say, for example, if – and this really happened -- a particular doctor was interested in mythology, as was one of mine, as a Jungian, then I too was “fascinated by the old myths” even though in fact I don’t think I could keep any of the characters straight in my head and was bored silly by all of them. Another time, a poet/teacher asked me if I really wanted to write a book (he wanted to help me write one, so he said) and I thought he wanted me to say something to get him out of the responsibility, that he didn’t really want to do it. So I gave him an excuse and said, “No, if I did, my father would get a kick out of it, and I don’t want him to because he won’t talk to me.” (This was, mind you, 15 years ago.) The thing is, Of course I wanted to write a book, but all I could do was to try to glean what HE wanted, and I knew somehow that he wanted NOT to write any damned book with that loathsome Pam Wagner. So I did what I had to: I let him off the hook, as he wanted me to. As I thought he wanted me to. And so we never did do the book...
That’s what I mean by no sense of self, no sense that I had any autonomy or right to exist or to have any wishes or desires or needs of my own, outside of those decided upon and granted me by others. Oh, yes, if OTHERs said, you like those...orange peel innards, don’t you? Then by golly I did like them, whether I knew what the hell they were talking about or not. Because in my world, others knew me better than I could possibly know myself. I did not have the right to assert anything different. How could I? I had no possible defense for saying, “I know myself better than you know me.” I knew perfectly well that ANYone could tear that apart in an instant, simply by observing that I was...xyz, and dare me to deny it!
Argh! Where was I going in all this? Well, that was a huge problem for me in those days, because I did not in fact know how to defend myself against any of the many attacks on me, even on my character (when you are labeled borderline, even when it is only because of anorexia, there are times when your character is indeed under attack). How could I defend myself when I did not 1) have a self to defend, or 2) feel I had a right to defend whatever that self might have been? None of that stopped the assaults...which pain me to this day, the galling assumptions and unspoken, uncorrected judgments against me. I could do nothing about them at the time, felt helpless to stop them, felt even that “maybe those people are right after all,” since I had nothing better to replace their accusations with or to substitute, saying, No, I’m not that, I’m this, and you are all wrong!
Eh, let it go, Pam. What’s in the past, sometimes has to stay there. It does no good to try to dig it up and change it. Can’t be done-- the egg is broken and can’t be put back together; besides, you ate and enjoyed the omelet. Yeah, it’s true, 25-30 of the past forty years of clinical psychiatry have not been kind to me, though there have been plenty of kind people, isolated like raisins in pudding, through the years. It’s hard to put all of it behind me, since it is in fact my life. It is not as if I’ve had another alongside it: I did not also have a marriage and kids and a career etc. No-- think about it. When I speak of clinical psychiatry, I speak of my entire adult life, and how it has affected me over the past 4 decades. When you see it in that light, perhaps then you can understand why all this looms to important to me, why I find it so hard to let go of the poor and abusive treatments of the 70s and 80s, my apparent, but only apparent (what else was there in my life?) obsession with illness and hospitals, and why, now, I find myself at odd hours in front of the mirror looking for someone I recognize.
4am. I came into the bathroom for something this morning but I don’t what it is now. I glance at myself in the mirror on the medicine cabinet, arrested by my reflection. That woman is me, a 55 year old “could-be grandmother?” But no matter how I look at her, I cannot see it. I see the tired dark eyes, the fine lines around the mouth and eyes. But to me, she still looks like the fifteen year old she is inside. How can she, how can I have gotten so old when I never lived? I never held a full time job or earned a living or paid my bills (not to mention taxes) or was complerely responsible for myself. Sadder, I never went on a date, I never danced with a partner, I never stayed up till dawn with someone I loved. And I never loved, I never fell in love, no, not even with Joe, for all that I love him. Not in that way, not in the Cinderella, butterflies in the belly, toe-tingling to head-fizzing way we all know that I mean.
I have lived a life constrained by my illness and by the financial limitations Medicaid and Medicare impose. Even now, because I desperately need the medications, housing and visiting nurse services these insurances provide, not to mention a safety net for inpatient stays, I am unable to earn a cent from either my jewelry-making or any book I might write. I am unable to seek any modicum of financial independence, simply because I would certainly be unable to provide for complete independence. It is truly an unfortunate feature of this system and it forces me either to remain idle, which I cannot do – or essentially to give away all the fruit of my labor. (The only possible remuneration for it that has been suggested, a great suggestion at that, is one Dr O made: the exchange of bartered services. If I gave someone my new sculpture for instance, I might ask them in return for 10 rides to see Joe, or something like that.)
Well, I realize this blog entry has gone from A to 8 and not to Z and certainly not back to A. But I hope I have covered some useful or interesting ground in the process and at the very least have not bored everyone 6 feet under! BD
Actually, not sleepless so much as sleeping on a crazy irregular schedule and working on a life-size papier-maché sculpture. Day before yesterday I slept from 4pm-8pm then worked on Decorated Betsy from 9-3am then slept till 7am. Yesterday I was so exhausted by 3pm that I feel asleep at 3:30pm. I was awakened with difficulty at 6:30 by the nurse who wanted me to take meds, but I fell back to sleep immediately and slept till 12:30am, without even a dose of Xyrem.
Yesterday some weird things happened. I was standing at Joe's bed, actually his chair as he was sitting up for the first time, while the RT did some suctioning, and I saw, or "saw" some pictures fall from my envelope of photos of Decorated Betsy that I'd brought to show him. I stepped back, looking for what had fallen, and said to Joe, "Did something fall? I saw something fall." He looked puzzled, and shook his head. No nothing fell. "But I saw it, I saw some paper, some photos fall." No, nothing. And indeed, nothing was there on the floor, though I looked under the chair and bed. It was strange, but I didn't give it too much thought, just figured I was "seeing things." Not in any but the colloquial sense of optical illusions etc.
Then Josephine came up to get me, and we were driving home when a huge splash of water came up across the car and I startled and screamed. Jo said, "Don't do that! You scared me." I looked at her. "But that was a big splash. We just drove through a huge puddle of water that splashed up at us!" She looked over at me. "No, we hit a hole, no water." "There was no splash? No huge splash of water?" "No--"
A couple of other incidents like this have happened recently, though I only now tie them together. I'm not sure what to make of it. I'm NOT hearing things, not that I know of. Except of course for the little people, who are always around, esp when I'm working on Decorated Betsy. I do keep the radio on all the time, too, to keep any other sounds drowned out, but I do not think that there are any "voices" in any event.
I feel kind of "squirrely," that is to say, nervous, trembly, super-alert and on edge. I dunno exactly how to describe it because I can also get very sleepy at the same time (due to narcolepsy). On the other hand, my mood is fine, not down at all, not particularly up, not more than usual at any rate. I don't feel euphoric or manicky, just -- I dunno, tight, wired, I can't seem to find the right word for it.
I wrote a poem I can't share here because I entered it in the something or other contest (can't remember the exact title ) in NYC where the winning poem(s) from five winners are placed, or excerpts thereof, on buses and subways. I don't expect it will win, of course, since there will be so many entrants, and many much more well known and better than I, but one can hope, of course. I would put it up here but the contest rules said it could not be published even on the internet, and while putting it up on a blog might not be considered "publishing," I don't want to take a chance. Once the contest is over, in April, I will put it up here. In any event, I will eventually use it at the front of my second book of poems, which I am already working on.
Sorry this is so "diaristic" and without any socially redeeming features. I really hate blogging when all I do is relate my own problems and emotional ups and downs, and that is why this is going to be so short today. Because I can't stand reading it myself!