Tag Archives: Health

Psychiatry and Abuse: restraint chair in hospital?

They restrain prisoners in this dangerous chair
Perople have died in this restraint chair -- in Guantanamo, yet they made me sit in one in Manchester Hospital in Connecticut, 2009

Some memories are returning. Not a great many but this one was triggered by something I heard briefly on television the other day, simply the mention  in some other context, of the words “restraint chair” and in an instant I flashed back (and I use those two words advisedly, since I do not actually know what is meant by a “flashback”) on something that happened when I was a priso…excuse me, patient, albeit involuntary, at Manchester Hospital in the fall of 2009.

This had been an extremely brutal stay up till then. When I was admitted the psychiatrist I was assigned to Dr BZ — I have written of this elsewhere so I won’t recap the whole thing, as memory is fickle and I may have misremembered it by now — stopped most or all of my meds, saying that if I was there, clearly they didn’t work. Then he swore I would take the one drug I refused to take: Zyprexa, and he scheduled a forced medication hearing, which naturally I would lose, having no power and only my word against his as to whether or not I needed it. Well, I did lose it, but inexplicably, and sadistically, instead of forcing on me a drug that by all accounts helped me, he changed this to TRILAFON, an old drug that did nothing for me and only made me completely miserable.

The upshot was that every time they came to me with medications, I flatly refused to take the Trilafon, even under the threat of a Haldol injection, The goon squad was called, and since I refused to quietly accept my punishment, they assaulted me, stripped me, and  forcibly injected me. This got to the point that they started four point restraining me to the bed, just to inject me…And it because such a routine that to avoid the “tiresome process” of getting out the restraints they simply left them attached to my bed. I know this not because i remember it but because my friend Josephine told me she saw them.

Me? I was so snowed by Haldol most of the time, that I could never even find my room, and had a sign in large letters taped to the door so I would simply recognize it when and if I managed to find it. Also, I was so dazed that I had to wear red slipper socks as a fall risk…but no one ever decided that maybe this was due to the drugs they were giving me!

Anyhow, one day, one day…and here is where memory kicked in after hearing those awful words on TV: one day the nurse who was most in charge of the daily torment, came to the door with another nurse pushing this large chair, and i recognized what it was at once. I had seen them before, having reviewed a book a long time before for the LA Weekly on the treatment of the mentally ill both in hospitals and prisons, a book, moreover decrying “barbaric treatments” of the past.

“You aren’t going to put me in that, are you? I’m not coming anywhere near it!” I shrank away from them and ran to the other side of my bed.

“We won’t restrain you, not  if you behave. But we want you to sit in it for today. There are no restraints on it now. It is just a comfortable chair. Come, sit down. The student nurse will be with you all day today.”

Then they essentially forced me to sit down and stay in the chair. Or else…I was terrified. and the student nurse knew it. Luckily, she would turn out to be a kind and wonderful young woman (her experience at Manchester almost drove her away from psych nursing, but  as it turned out she discovered Natchaug Hospital, and became one of their most beloved nurses). As she told me later — because memory mostly fails me here, but for her reminders — she did Reiki with me, the practice of nearly touching a person but not quite, and moving her hands along my body, not sure how it works or worked, but she later told me, at Natchaug, that I responded well to it, and stayed calm all day. I even as she said, took my meds. Which means I actually swallowed the Trilafon, probably because I couldn’t bear to have another fight in front of her.

Whatever was the case, if Reiki is as I described it, no wonder I responded well, as it was a NON-physical therapeutic way of dealing with me, non-assaultive, gentle, non-trespassing and non-brutal. Why the rest of them could not have followed suit or come up with some other way to treat me as she did, I will never know. Clearly they learned nothing from her; she left and likely they are back to treating others as they did me.

I believe they would indeed have used that chair as a restraint chair on me. I do not think they brought it in just as a comfortable chair, I believe it was to intimidate me, to cow me, but I think too that they were in fact prepared to use it. I do not have the slightest doubt. I would put nothing past those people who so brutalized me as to put me in four point restraints over and over during more than 8 days. For all I know it might have been more than eight days. I simply do NOT know, as amnesia has sealed up much more than memory preserved.

Enough for now. I need to write tomorrow about the Versatile Blogger Award that DogKisses gave to me. I am shamefully late in thanking her. And I do not know how to place the badge on my site, but she was such a lovely blogger to do so, that I do owe her her own post of thanks and appreciation.

More tomorrow.

Use, Overuse and Abuse of Psychotropic Medication: the risks and the facts

Please note about the post below that I already accept that some people will  object to all I say, even accuse me of encouraging people not to take their “meds.” I have not done any of that. Education is education, and if you or your loved one needs to be kept ignorant in order to obediently accept being medicated, please don’t read this or let them read it either, that’s my best and only advice.

 

If you want to know someone else’s arguments on the subject, read THE ANATOMY OF AN EPIDEMIC, by Robert Whittaker. I do not agree with everything he writes there, but it certainly was a springboard for my thinking.

 

So! This post deals with what I see as a gross failing in 21st century psychiatry, the over-prescription of psychotropic drugs. Sometimes driven by psychiatric practitioners who have neither the time nor interest or training to do “talk therapy” or even basic counseling, sometimes driven by the desires of consumers/patients themselves for a no-trouble, “quick fix” for their problems (not all of which are strictly speaking pathological), it is driven certainly by the demands of pharmaceutical companies for profit.

 

This last, Big Pharma’s requirement for increased profit, has led to massive advertising campaigns and the legal and not so legal encouragement of “off-label” uses, a band wagon upon which both practitioners and, I would add, eager consumers leap. It is not without consequence that both the drug companies and many if not most psychiatrists / prescribers would have consumers believe that psychotropic drugs “treat” illness, that is to say that the drugs target a specific neurotransmitter that has been conclusively shown to cause a given condition and to be measurably “out of balance” compared to levels in so-called normal persons.

 

THIS IS NOT THE TRUTH. I repeat: It is not true that psychotropic drugs treat illness, not the way antibiotics treat infectious diseases. An antipsychotic or antidepressant drug is NOT a silver bullet specifically targeted at a pathological culprit. These drugs are prescribed to alleviate symptoms, to alleviate, for instance, hallucinations or delusions, and maybe, sometimes, to elevate a person’s mood when pathologically depressed. They may be prescribed for other “reasons” as well, though to call a drug that is used by a doctor/patient for a presumed condition a “treatment” is not the equivalent of saying that the drug is either indicated or effective. It only says that someone has decided to use it as if its purpose were to treat a supposed condition.

 

What do I mean? Well, take, for instance, antibiotics. Most of us know by now that they are useful and indeed curative in many cases of bacterial infection. We also know that sometimes ABs are prescribed i.e. used, in cases of viral infections and illnesses. But antibiotics can neither treat nor alleviate conditions caused by viruses. So if a physician gives a person a prescription for penicillin in the case of a cold or flu, (and for whatever reason) he or she may be said to “use” the drug for such and such, yes, but it says nothing about whether the drug is useful or effective or necessary. Which of course in such cases it is not.

 

Ditto some prescriptions for APs and ADs. Ditto maybe ALL such prescriptions: yes, they can use APs and ADs as if they targeted a “mental illness” but just because one takes a pill “for something” does not mean or definitively indicate that the drug is useful, helpful or harmless.

I know, I know, many people who will object that such drugs have helped them function in life much better than before, when they were self-described (or otherwise) “basket cases.” I cannot take that away or even deny that a couple of APs seem to have helped me more than they harmed me. Although I now swallow the APs Abilify and Geodon together (I cannot take them separately without ill effect) taking one AP, Zyprexa, seemed to me to have near miraculous consequences in my life –I have detailed these elsewhere but “take my word for it” I felt like life’s lights had been switched on in my brain. At the same time, Zyprexa’s other effects were devastating: obesity, high cholesterol and triglycerides, pre-diabetic blood glucose levels yada yada yada. (By the way, why is one effect a “treatment” and the others “side effects” and therefore discountable? Aren’t all effects of drugs effects of the drugs?)

 

So I am not saying that the drugs do “no good” ever or at all. And I am emphatically not advising anyone to stop taking whatever they have been prescribed. For one thing, abruptly stopping medications, particularly psychotropic ones, can be a prescription for disaster. Not only could the physical consequences be unpleasant, but to suddenly stop a med only sets one up for what looks like “relapse.” If your body is used to taking a drug, and it is abruptly and completely withdrawn, doesn’t it make sense that you will feel untoward effects similar to those the drug is supposed to treat? I used to take Inderal for headache prevention and akathisia, but another effect of it was that it lowered my blood pressure and slowed my heart rate. In one hospital, for some unknown reason, they stopped giving me Inderal (propranolol)  — one day I was taking 40mg three times a day, and the next day I was taking, well, zilch.

 

Is it any wonder that within the next day or two, my “vitals”, though normal before I ever took the Inderal, rebounded way over normal limits, my heart racing painfully and my BP sky-high? Of course not. This was no proof that my heart-rate was pathologically rapid nor that I “had” high blood pressure. Of course, the doctor tried to tell me so, but in fact all it proved was that carelessly and rapidly stopping a beta blocker drug resulted — like a rubber ball dropped onto the pavement – in what was essentially withdrawal and temporary rebound.

 

So if you abruptly stop your meds because you think my argument here “holds water” you will be setting yourself up for two things: 1) apparent relapse of illness even if it is really just withdrawal or rebound symptoms, 2) possibly mistaken evidence that you need the drug. However, if you and your doctor decide that you might do okay without the medication, and you very, very slowly reduce it, then you have a much better chance of not inducing a relapse, and/or “proving” that the drug is essential to your mental health.

 

Note that whether a given medication really helps or not is up to you and your doc to ascertain. All I mean to say is this: do not drop any AP or AD without considering all the consequences of stopping it without a gradual taper.

 

Now I want to segue into some information from “reputable sources” so-called so you can see where I am coming from. Please continue below the following if you already know all this. I neither endorse it nor argue with it. I am just providing this official “information” – true or not so true — in order to further my argument below it.

 

For the purposes of the discussion, I deal only with antipsychotic drugs (APs) and antidepressants (ADs) of the SSRI, SNRI and tricyclic variety. I know there are other important medications used in psychiatric settings and treatment but for space and energy’s sake, I will limit this post to those two categories because for good or ill they are often prescribed together.

__________________________________________

 

Forgive me, NIMH, but I need to crib a short section from your website on the side effects of various psychotropic drugs http://www.nimh.nih.gov/health/publications/mental-health-medications/complete-index.shtml before I begin my discussion about them. Any emphasis (italics) or bracketed word/s are my own.

 

 

First NIMH (National Institute on Mental Health) has this to say about “anti-psychotic drugs”:

 

“Some people have side effects when they start taking these [antipsychotic] medications. Most side effects go away after a few days and often can be managed successfully. People who are taking antipsychotics should not drive until they adjust to their new medication. Side effects of many antipsychotics include:

  • Drowsiness
  • Dizziness when changing positions
  • Blurred vision
  • Rapid heartbeat
  • Sensitivity to the sun
  • Skin rashes
  • Menstrual problems for women.

 

“Atypical antipsychotic medications can cause major weight gain and changes in a person’s metabolism. This may increase a person’s risk of getting diabetes and high cholesterol.1 A person’s weight, glucose levels, and lipid levels should be monitored regularly by a doctor while taking an atypical antipsychotic medication.

 

“Typical antipsychotic medications can cause side effects related to physical movement, such as:

  • Rigidity
  • Persistent muscle spasms
  • Tremors
  • Restlessness.

 

“Long-term use of typical antipsychotic medications may lead to a condition called tardive dyskinesia (TD). TD causes muscle movements a person can’t control. The movements commonly happen around the mouth. TD can range from mild to severe, and in some people the problem cannot be cured. Sometimes people with TD recover partially or fully after they stop taking the medication.

 

“Every year, an estimated 5 percent of people taking typical antipsychotics get TD.”

 

ANTIDEPRESSANTS

 

Antidepressants are common psychotropic drugs frequently prescribed. Here

is  a block of quotes from the NIMH site regarding the use and side effects of SSRIs, SNRIs, and tricyclics. MAOIs are also mentioned, though they are far less often prescribed than in the past.

 

“Depression is commonly treated with antidepressant medications. Antidepressants work to balance some of the natural chemicals in our brains.* [see discussion that follows] These chemicals are called neurotransmitters, and they affect our mood and emotional responses. Antidepressants work on neurotransmitters such as serotonin, norepinephrine, and dopamine.

“The most popular types of antidepressants are called selective serotonin reuptake inhibitors (SSRIs). These include:

  • Fluoxetine (Prozac)
  • Citalopram (Celexa)
  • Sertraline (Zoloft)
  • Paroxetine (Paxil)
  • Escitalopram (Lexapro).

“Other types of antidepressants are serotonin and norepinephrine reuptake inhibitors (SNRIs). SNRIs are similar to SSRIs and include venlafaxine (Effexor) and duloxetine (Cymbalta). Another antidepressant that is commonly used is bupropion (Wellbutrin). Bupropion, which works on the neurotransmitter dopamine, is unique in that it does not fit into any specific drug type.

“SSRIs and SNRIs are popular because they do not cause as many side effects as older classes of antidepressants. Older antidepressant medications include tricyclics, tetracyclics, and monoamine oxidase inhibitors (MAOIs). For some people, tricyclics, tetracyclics, or MAOIs may be the best medications.

What are the side effects?

“Antidepressants may cause mild side effects that usually do not last long. Any unusual reactions or side effects should be reported to a doctor immediately.

“The most common side effects associated with SSRIs and SNRIs include:

  • Headache, which usually goes away within a few days.
  • Nausea (feeling sick to your stomach), which usually goes away within a few days.
  • Sleeplessness or drowsiness, which may happen during the first few weeks but then goes away. Sometimes the medication dose needs to be reduced or the time of day it is taken needs to be adjusted to help lessen these side effects.
  • Agitation (feeling jittery).
  • Sexual problems, which can affect both men and women and may include reduced sex drive, and problems having and enjoying sex. [Note that this side effect is NOT listed as temporary, as indeed it is not, and this is extremely important to understand…]

“Tricyclic antidepressants can cause side effects, including:

  • Dry mouth.
  • Constipation.
  • Bladder problems. It may be hard to empty the bladder, or the urine stream may not be as strong as usual. Older men with enlarged prostate conditions may be more affected.
  • Sexual problems, which can affect both men and women and may include reduced sex drive, and problems having and enjoying sex.
  • Blurred vision, which usually goes away quickly.
  • Drowsiness. Usually, antidepressants that make you drowsy are taken at bedtime.

“People taking MAOIs need to be careful about the foods they eat and the medicines they take. Foods and medicines that contain high levels of a chemical called tyramine are dangerous for people taking MAOIs. Tyramine is found in some cheeses, wines, and pickles. The chemical is also in some medications, including decongestants and over-the-counter cold medicine.

“Mixing MAOIs and tyramine can cause a sharp increase in blood pressure, which can lead to stroke. People taking MAOIs should ask their doctors for a complete list of foods, medicines, and other substances to avoid. An MAOI skin patch has recently been developed and may help reduce some of these risks. A doctor can help a person figure out if a patch or a pill will work for him or her.”

___________________________

First of all, do ADs treat a chemical imbalance? Is that statement even true, or just a fiction made up to “prove” that ADs work? If true, what does a “normal” balance consists of? Does anyone know how to measure the levels of these neurotransmitters, and if so, please let me know — give me numbers — where and what the “imbalance” ADs are correcting is.]

 

So all right, thems the “facts.”. Note that I say nothing about efficacy in what follows; I speak only of the side effects. But what about these so-called side effects? It seems to me to be hardly inconsequential when an AD, taken to improve the quality of one’s life and increase ones ability to feel pleasure, which is often absent in depression, simultaneously blurs ones vision (so you cannot read), causes weight gain (as tricyclics tend to do) and has sexual side effects that include reduced sex drive, and problems having and enjoying sex. For many people, maybe even most people, sex is one of the greater pleasures in life, at least sometimes. It certainly promotes better intimate relationships for most people and lets face it, people like it. So what is one to think of a drug that “treats” depression by inducing reduced sex drive, and problems having and enjoying sex. Is the reduction of pleasure in sex without importance? Or is the doctor saying, well, you can give up sex and sexual pleasure, what does it matter?

 

The thing is, reducing any pleasure, especially in a person who has trouble feeling pleasure at all, is not, in my considered opinion good treatment. Who has the right to tell a patient that if she or he takes an AD that they will have include reduced sex drive, and problems having and enjoying sex but that this isn’t important in the general picture. Of course it is important. Think of all the men who are devastated by “simple” impotence. To clinically induce impotence or the female equivalent, to clinically, biochemically reduce the ability to enjoy sex or to enjoy pretty much anything, is not just bad treatment it seems to me nearly criminal. How many people who have taken ADs and found themselves experiencing reduced sex drive, and problems having and enjoying sex actually got better? Well, okay, if perhaps you are not told and so do not understand that the drug itself causes this effect you might just say, “Ah well, I dunno why but sex is not important, I don’t really give a damn about it anymore..”. In short, you might “forget” — having no sex drive tends to do this — that sex was pleasurable and attribute it to your natural state. But in that sense you simply are denying that what you “don’t know” or feel any longer was ever important or a source of pleasure because you do not feel it now. Instead, you might accept that it is and always was a trivial concern.

 

But no one has told the millions of users of ADs that while they might feel some increase in pleasure elsewhere in their lives, their intimate lives will be fraught with reduced sex drive, and problems having and enjoying sex. How many people now feel utterly depressed because of their unexplainable reduced sex drive, and problems having and enjoying sex? Do they even understand that is is not “they themselves” not some inner deficiency, but a side effect of the drug that is/was supposed to make them “feel better.” If I were more paranoid than I am at the moment, I would say it sounds like some sort of ugly conspiracy by doctors and drug companies to avoid even informing patients of these serious consequences lest they refuse the drugs in the first place…So I ask you, how many of you, or how many people in general, would voluntarily, not to mention eagerly take a pill the effects of which include reduced sex drive, and problems having and enjoying sex?

 

 

Argh, it is getting very late and this has been a long treatise, impassioned in a curious way for someone who has never, drugged or undrugged, cared about sex…I so wanted to get to the APs and the dangers of adding them willy nilly to an AD “cocktail.” If reduced sex drive weren’t bad enough, is anyone telling these people who are being prescribed an AP either off-label or unnecessarily that it will almost certainly cause some weight gain, with all the usual concomitant consequences, and may even induce diabetes? Is anyone telling them about how it feels to suffer from akathisia, a very common effect of APs?  Drug companies may discount it as mere “restlessness” but akathisia does not mean that you simply want to take a walk every afternoon…it is completely agonizing, those of us who have experienced it will with alacrity tell you. No one simply accepts akathisia – restlessness, hah! – and ignoresit. You cannot ignore it and it is devastating to all feelings of pleasure and all sources of enjoyment, should you, after losing your sex drive, have any left.

 

But as I wrote above, it is getting too late at night for me to write more, and perhaps I have said enough. You might accuse me of having “done enough damage” too, I dunno. But I believe these things and I think they need to be said, whether or not anyone takes them seriously.

 

Shock Treatment (ECT) in 2004

(Edited in 3/2012 . Note that all names have been changed back to their originals except for names of the people involved. Although in Divided Minds, we were forced by the publishers to disguise everyone, including the hospitals, here descriptions of people once  changed to “protect them” have been undisguised. I write nothing but the truth as I remember it — I wrote a fair amount in my journals at the time and I referred back to my notes there in writing this — and I intend no libel in any event. In fact, I want to be as fair as possible and to bend over backwards in giving as much credit where it is due as possible.

Note, because many may have read this before, I want to

I hope this will be a chapter in BLACKLIGHT, my second memoir and a possible sequel as it were to DIVIDED MINDS.

The Ogre Has ECT: 2004

I am delivered like a piece of mail to the Hospital of St Raphael’s, on a stretcher, bound up in brown wool blankets like a padded envelope. It’s the only way the ambulance will transfer me between Norwalk Hospital and this one. The attendants disgorge me into a single room where de-cocooned, I climb down and sit on the bed. All my bags have been left at the nurses’ station for searching; this is standard procedure but I hope they don’t confiscate too much. An aide follows me in to take my BP and pulse, and bustles out, telling me someone will be back shortly. I sit quietly for a half an hour, listening to the constant complaint of the voices, which never leave me, sometimes entertaining me, most of the time ranting and carping and demanding. A thin, 30-something woman with curly blonde hair, residual acne scars that give her a kind of “I’ve suffered too” look of understanding, and rimless glasses knocks on the door-frame..

“May I come in?” she asks politely.

“I can’t stop you.” My usual. Don’t want to seem too obliging or cooperative at first.

“Well, I do need to take a history, but I can come back when you’re feeling more disposed…”

“Nah, might as well get it over with.” Then, nicer, I explain, “I was just being ornery on principle.”

“What principle is that?”

“If you’re ornery they won’t see you sweat.”

“Aah…”

“And they won’t expect you to be medication-compliant right off the bat.” I shrug my shoulders but grin, I want to think, devilishly.

“I see you have a sense of humor.”

“You should see me…”

“I’m sure we all will. A sense of humor is very healthy. But it worries me that you already plan not to take your meds.”

“I’ll only refuse the antipsychotic. Look at the blimp it’s turned me into.” I haul my extra-large tee-shirt away from my chest to demonstrate. Fatso, Lardass! Someone snipes. She doesn’t know it but you really believe you’re thin. Ha ha, you’re a house! Look at yourself! LOOK at yourself! Ha ha ha ha! The voices are telling the truth: I know the number of pounds I weigh is high, outrageously high for me, having been thin all my life, but I haven’t lost my self-image as a skinny shrimp, so I can’t get used to being what others see. The voices love to remind me how fat I really am. Only the mirror, or better, a photograph, reminds me of the honest to god truth, and I avoid those. I avert my eyes, or search the concrete for fossils, when approaching a glass door. Anything not to be shocked by what I’ve become. Pig! Glutton! It seems they don’t want to stop tonight…

I realize suddenly that I’ve lost track of the conversation.

“I don’t think they’ll allow you to do that for long.”

“Do what?”

“Don’t you remember what we were talking about? Were your voices distracting you?”

“Just thoughts, you know, plus some added insults.”

“You’ll have to take all your meds eventually.”

“Then they’ll have to switch me to a different pill, even if it’s less effective.”

She sucks the top of her pen and looked down at her clipboard. “So,” she starts the formal intake. “What brings you here to St Raphael’s?”

The voices break in there, again, confusing me. When I can get my bearings I tell her what made me transfer from Norwalk Hospital and why I opted for shock treatments. She takes a closer look at the mark of Cain I’ve burned into my forehead, writes something, then corrects me.

“We like to refer to them as ECT here. ‘Shock treatments’ brings to mind  the terrible procedures of the past. These days you feel nothing, you just go to sleep and wake up gently. I know. I assist at the ECT clinic.

“Oh, I know, I know. I’ve had ECT before. I know what it’s like and it’s a snap. I asked for this transfer because I hope it will help again.”

We talk some more about why I’m here and what I’ve been through and the voices keep to a minimum so there’s not too much interference. She says she’s going to be my primary nurse and that she thinks we’ll work well together. I nod, thinking she’s pretty okay, for a nurse.

I’ve arrived after lunch, which is served at 11:30am so someone brings me a tray and I pick at it in my room. People come in and out of my room but only speak to me a second or two before they leave, a doctor does a cursory physical, someone takes me down the hall to weigh and measure me. I return to my room, too scared to do otherwise, constrained by the Rules of the voices. The first break in the afternoon is medications in the late afternoon, when someone tells me to line up in front of a little window near the nurse’s station. When it’s my turn, I look at the pills in my cup. Ugh, 20mg of Zyprexa, an increase, plus a host of other pills I can’t remember the names of. I hand the pill back to the med nurse. I’m not taking this, it makes me fat, I say. Give me Geodon. at least I don’t put on weight with Geodon.

“Sorry, Dr Corner has ordered this one. We can’t just go around changing doctor’s orders. You either take it or you refuse.”

I was in a quandary. I hadn’t even met the doctor and already I was fighting with her? Should I take it and argue with her later? But then I’ll eat my whole dinner tray and more. Better to start off with my principles intact, so she knows what I’ll take and what I won’t take. I hand the pill back. ”Sorry, I won’t take it.”

“If you decompensate further we will have to give you a shot, you know that, don’t you?”

“I’ll be fine.” I do a little dance step.

“Yeah, and look what you’ve done to your face. Come closer.”

Wondering what she wants, I lean in gingerly, fearing her touch, but she only takes a tongue depressor and smears some ointment on the big oozing sore.

“You’re done.Go eat some supper.”

At 4:30? That’s pretty early. I can’t cross the threshold of the dining room, the Rules the voices make forbid it. I cannot enter the milling crowd, suffering little electric shocks every time my body makes contact with another’s. Instead I retreat to my room. Sitting on the edge of my bed again, I wonder what to do. How can I get supper, or any meal, if the voices won’t let me go into the dining room?

Just then, the thin blonde nurse with the glasses, what’s her name, leans into my room. “Aren’t you hungry? There’s a tray for you waiting outside the dining room.”

“They made a rule I can’t eat with other people, and I can’t get in the dining room…So I can’t eat.” I read her name tag. “Prisca.”

She smiles and glances down at the tag on her chest.  ”Oh, just call me Prissy, everyone else does. I hate it, but what can you do? What are you talking about? There’s no such rule. For now, I guess I’ll let you eat in your room, but that  is against the rules and we’ll have to get you into the dining room eventually, whatever the voices tell you.

She brings in the tray: white bread with two slices of bologna and a slice of cheese tossed on top, a packet of mayonnaise, a small green salad in a separate bowl, with a plastic slip of French dressing, and a packaged Hostess brownie for dessert. I didn’t eat lunch, though they brought it in, so even this impoverished repast looks good to me and I eat everything, despite not having taking the hated Zyprexa. I curse myself for it, of course, and do some  leg lifts and crunches for exercise afterwards. Ever since I’ve been refusing the drug, I have lost weight. Now I am down to 155 lbs from 170 the last time I weighed myself and I intend to get much thinner, since I started at 95 before medications over the years slowly put weight on me.

After supper the voices start in again, louder and louder, telling me how fat I am, how disgusting and terrible I am. I notice the clock hanging on the wall, which ticks audibly punctuating each sentence. The voices were carping, now they are threatening, and demanding…Finally, their all too familiar sequence segues into telling me I’m the most evil thing, and they don’t say person, on the planet. I’m the Ogre that ate Manhattan, I’m Satan, I’m a mass murderer, I killed Kennedy and deserve to die, die, die!

I’m wearing a heavy pair of clogs with wooden soles and almost before I can think about it, I know what to do. I heave one up at the clock, hitting it dead center. It crashes to the floor. Scrambling to grab a shard of the clear plastic cover before the staff comes running in, I lunge towards where I saw the largest piece fall, one with a long jagged point. I have my hand closed around it when someone tackles me from behind. He’s not very big and I can feel him struggling to keep me pinned. I almost succeed in stabbing myself, but he manages to engulf my hand with his two and press them closed against the flat sides of the shard.

Other people  crowd into the room now and they pry the shard from me and grab my arms and legs so I’m completely immobilized. Then at a word murmured by one of the male aides who have materialized out of nowhere, they swing me up onto the bed, like pitching a sand bag onto a levee. I scream but they ignore me and strap my ankles and wrists into leather cuffs which have been rapidly attached to the bed frame: four point restraints.

I continue to scream and scream, but nobody pays attention. A nurse comes at me with a needle,  saying it is Haldol and Ativan and proceeds to inject me. Although I am still crying that I want to die, that I’m Satan, the Ogre that ate Manhattan, that I killed Kennedy, I’m the evil one, the room then empties, except for a heavy-set café-au-lait sitter, who hollers louder than I do that her name is Caledonia. She pulls up a chair in the doorway, pulls out a cosmetics bag and proceeds to do her nails in spite of me.

I am told by Prissy that I scream most of the evening and keep the whole unit awake until given a sleeping pill and another shot. All I remember is restless twilight sleep coming at last, broken when a short sandy-haired woman, dressed in a sweater set and skirt, comes in and takes my pulse. I’m groggy with medication but she speaks to me nonetheless.

“I’m , Dr Corner, your doctor. You’ve had a bad night I see. Well, perhaps tomorrow we’ll get a chance to talk.”

“Get me out of these things!” I mumble angrily. I can’t sleep like this!”

“”Not yet. You’re not ready. But try your best to sleep now. We’ll re-evaluate things in the morning.”

Then she turns and is gone.

As I get to know her, I will like Dr Corner for her kindness, toughness and honesty, but I will hate her too for opposite reasons and it will be a long time before I  know whether the liking or the hating or something else entirely wins out.

The first thing that makes me know ECT is going to be different at St Raphael’s than the to the ECT suite in wheelchairs, the way I’ve known since childhood all hospital patients must travel. We walk there, all of us, down interminable corridors, around several corners, through doors to more of the same. In short by the time we get there I have no idea where we are.  I said it was a snap when I had it before, but now I feel like a prisoner going to the hangman, a “dead man walking.” Something about our going there in a group, under our own steam, makes it feel like punishment, like having to cut your own switch, not a medical procedure at all. This sets my nerves on edge. Then, when we finally get to the rooms clearly marked “ECT Suite,” instead of the doctor being ready for us so there’s no time to anticipate or fear what is ahead, we have to wait and wait and wait: we’re told the outpatients have to be “finished up” first. My apprehension grows. I’m used to getting to the ECT rooms and immediately climbing up on the table and getting it over with. Waiting and having time to think about it brings me close to tears.

Finally four in-patients are to be taken. I think the nurse calling us in senses I am too anxious to wait any longer, for she makes sure I’m with the first group. I clamber up on the table, and see Dr Corner looking down at me, smiling. I notice how white her teeth are and the little gap in her shirt across her chest as she bends over me, strapping something over my forehead as Prissy puts a needle into the heplock already in my arm. I feel my arms and legs quickly cuffed down by others in the team, a mask clamps down over my face and I’m told to breathe, breathe in deeply and I breathe and breathe and a chasm in hell opens and the demons reach out and scream as I plummet past into a terrible inky blackness…

I wake up a second later and immediately vomit into a kidney basin hastily held out by a nurse. “Why didn’t you do it?” I cry out, confused. “Why didn’t you do it, why did you made me wait? I can’t go through this again!”

Strangely, Dr Corner has disappeared, and so have Prissy and the nurses that had surrounded me just an instant before. Instead a plump, baby-faced older nurse smiles as she takes away the kidney basin and says, kindly, “You’ve been sleeping  soundly for an hour. They did the treatment already and you’re waking up. How about trying to sit up now?” Slowly, I push myself to a sitting position and swing my legs over the edge of the table. No dizziness, no more nausea. I feel okay, except for a slight headache. So I slide off the table and ask where to go. Surely they won’t make me stay a long while this time. The nurse leads me to a wheelchair and asks an aide to take me back to the unit. Ah, a chair at last. At least I’m not expected to walk on my own after that ordeal.

ECT Takes place on Monday, Wednesday and Friday each week and though I vomit many times upon waking up, that is the least of it. What I dread most is the anesthesia, how I plunge from perfect alertness into the dark pit and feel like I wake a second later, sick and confused. I grow more and more afraid until, at the end of a series of 8 sessions, I refuse to go on to a second, even though my symptoms are still severe and Caledonia comes to sit with me one to one more often than not. Dr Corner tries to persuade me, but I am adamant, No more ECT. Then she threatens to have the next series court-ordered  and to add insult to injury, she says she will force me to take Zyprexa as well, the drug I so hate. I explode.

“What! You f—ing can’t do that! I’m a free citizen, I’m not a danger to myself or anyone else.”

“In fact, I can do it, and I am going to do it, whether you like it or not. You need more ECT and unfortunately you refuse the only drug that is effective for you. Pam, look, how can you say you’re not a danger to yourself? Look at your forehead! That’s not the mark of  I  it’s just self-mutilation. Look at where you carved that mark into your hand when we weren’t watching you carefully enough. Isn’t that danger enough?”

“But I’m NOT going to kill myself. I don’t want to die. I just want to be disfigured so no one will want to be around me and they’ll stay safe and uncontaminated.”

Dr Corner’s eyes suddenly glitter and she has to blink a couple of times. “Well, I’m not going to let you continue to do what you want. Period.”

She was standing at the foot of my bed, one foot on a lower rung, casually holding a clipboard. But she moves closer to me, standing to one side, the clipboard clasped business-like across her chest. Gazing intently at me, she shakes her head in what appears to be sadness.  I’m not sad, I know what I have to do. I don’t understand why she feels this is so terrible, but I know enough to remain quiet. Finally, she turns and quietly slips out of the room.

This alarms me; it shocks me. I know she means what she says. Dr Corner never lies. Worst of all, Dr O’Hayley, my outpatient psychiatrist, has signed off on it well, agreeing  it is the only thing left to do, that already I’ve been in the hospital two months and little has changed, that the situation is desperate. The problem is that to get a court order I have to have a conservator who will agree to it. They appoint my twin sister and they discuss with her whether or not she’ll agree to forcing more ECT on me, in addition to Zyprexa. Despite fearing that I’ll hate her, she too is convinced there are no other options.

So Dr Corner wins and I endure eight more ECT sessions. Finally I’m discharged, much improved, so everyone says, a month later, promising, as a condition of my release, that I’ll continue to take Zyprexa. I do promise, even though my history clearly suggests that I will not.  I’m also supposed to return once every two weeks for maintenance ECT treatments and Dr Corner threatens me with a police escort if I don’t comply. But this time I thumb my nose at her. So, she’s going to get both the Hartford and the New Haven police involved? She thinks they are going to bother to arrest me just to drive me down to the hospital for ECT, something they themselves probably consider barbaric? J’en doute fort. I doubt that big time! In fact, after a call to the Legal Rights Project, I learn that any conservatorship was dissolved the moment I was discharged from St Raphaels and that the doctor has no power over me at all now, zilch. So I write Dr Corner a nice apologetic letter, but sorry, doc, no more ECT for me. Ever.

Several months later I pour lighter fluid over my left leg and set it on fire. So much for the restorative powers of electroshock treatments.

Trauma: Exposure Therapy or Salt on Wound?

Caveat Lector or Warning to the Reader:

Although it is only 10:30pm, I seem to be falling into dreamtalk as I write this…I must be sleepier than I know, and half asleep or falling asleep every so often as  I write. I say this because I came to a couple of times already, only to find a paragraph of weird gobbledygook on my post. If this happens again, and I do not recognize it until tomorrow, forgive me for sleeping and writing this with the consciousness of a bad dream only. I plan to proofread this entire thing tomorrow, just to vet what I did write.

The subject of this post says it all. I have been exposing myself to “the problem” ruthlessly for months now, and to no avail. I still suffer from the same symptoms of what would be PTSD (had not the good doctors redefined the word “trauma”) and I cannot in truth say that they are any better. Yes, I do remember a little bit of what happened, more than I did before (for those who do not understand the reference, see my Oct 7, 2011 post titled “Psychiatry and Authority: Restraints Update”). At least it can be recalled to me by other means and I can assent to it with some sense of Yes, I do remember that happening…But as to the tears and trembling and heart racing etc I see no improvement, and if no- improvement after these many months of self-treatment is less than to be expected, then I would say that not only has exposure therapy not helped me, it has made things worse. Rather than being literally therapy, it has only added “insult to injury” or as I put it, laid salt on the wound.

I do not know what to do about this. I find myself irritable, even irascible, especially with family members who I believe did not care enough to rescue me from the clutches of malignancy when they knew it was going on. Indeed, they in fact did not either care or do so. But that is the same old story and I can beat myself over the head with their inadequacies as family members, or I can simply wave them away as inadequate in such matters and go on…Ah, but how to go on? How do I continue to live despite these horrendous feelings and constant on-the-verge tears? Even Dr C seems at a loss, though I am not sure why. Surely she must have dealt with trauma — or “trauma-like situations” (since this wasn’t Katrina or the tsunami, so by definition it wasn’t trauma…) before now. Surely she ought to know what to do about this situation. Why then does she seem so helplessly unable to tell me what to do or to help me get over this? Why won’t she give me any advice or help? I can barely go on some days and yet she never offers anything but a mirror to myself, to what I might think or feel. I tell you, I can hear the professional technique in her voice sometimes, even as I fall for it.

Yet I really like her and I don’t know why. Is it because she does NOT order me around the way Dr O did? Is it because she is NOT authoritarian and directive the way Mary was? I dunno I just know that she listens to me and takes me seriously, does not consign every idea I have to the dustbin of delusion as Dr O (Mary) did.

Nevertheless, I still do not know what to do or how to get over this problem, and even though the OPA has decided in my favor and is sending my case on to the the Dept of Public Health for further action, even that doesn’t relieve me or help my anxiety and anguish abate. Why should it? What is done is done, and the consequences are as they are. My problem is how to go on, how to survive, how to deal with the result and get on with life. But so far I have not figured out how. Despite my talk of forgiveness and acceptance, I have not reached that state yet, not perfectly, not even adequately. If I had I would not be so torn apart. I believe in forgiveness as the healer of all, but when push comes to shove, I cannot seem to take my own advice any more than most other people can.

 

Yet I see that I resent so very much and it does not all have to do with the restraints issue. Some of it is much larger and concerns a general anger or resentment towards how certain people and family members have treated me  over these past decades, issues that have not even yet been resolved. This — my anger — doesn’t endear me to anyone, and it solves nothing to go there, to decide and then rage against whoever did “this” to me.

 

I do go there, of course, or I wouldn’t be complaining of how they tortured me. I torture myself with these things. And I get irate and start sobbing and write angry emails that likely no one understands the genesis of, though I make the assumptions that they will be obvious to the person on the receiving end. Yet the grievances are real. It is just that it is useless to bring them up, not so much with others as for me. What good does it do to cry over what happened twenty or thirty years ago, even if it continues to happen now with the same person? I ought to have learned something over those intervening years and that is that the person is not going to change and that their injurious nature, their manner of hurting me is going to continue no matter what I do or say to them. Either they do not care or they simply have no idea or understanding of the impact of what they do or say (or do not do or say) has on me. But in the end it is I who must continue, must soldier on, and I should have learned to do so without their support or confidence.

 

I have, I have. It is just that a little improvement in things fooled me yet again into expecting real change, a real difference, a genuine affection and positive behavior towards me. Instead, in both cases, I get the same old,  same old, just dressed up in affability and pretend benevolence until I cross them. In one case, it is egregious, and the reaction is fury, the greater the truth I point out, the more massive the indignation and rage. In the other case, the sheer oblivion to the hurt caused is cause for massive hurt itself. And both people continue to pang me today, either on purpose or because they cannot help it. In the one case, I believe it is in fact deliberate. In the other, perhaps not so, but from personal weakness. I can try to forgive the latter, but the former is just too galling and it behooves me to stay the hell away from that person…as that is the best I seem to be able to do to protect myself at this point.

 

Well, without respect to the above discussion, which was vague in the extreme because I do not believe I have real privacy here and you never know who might linger around to read, despite all that, I want to show you a new piece of art I did over the last two days. As art it is nothing, though it is the first time I have attempted a scene with multiple “characters” actively engaged in physical activity, so in that sense it was st least personally challenging. But the scene itself may be instructive, if horrifying to some people.

 
I am only going to post the initial sketch and the final version, plus some details from the drawing as it is good to get a closer look at parts of it that a monitor-size photo cannot give you. The original is at least 24″ by 17″ so it is reasonably large and has room for more details than my usual 11″ by 14″ drawings.

 

Just had to erase a paragraph of complete “dreamtalk” here, and fearing that I may descend to such incomprehensible language again, I will hereby cease and desist in the verbal production department and just upload the two photos. First the sketch and then the final colored pencil product. Both are very closely connected with the trauma that I wrote of at the outset and the drawing was part of my next attempt to “expose” it out of me. Whether it did or did not, I will find out on Jan 6 -9, 2012, when i go back to Wisdom House to write for the weekend. If I cannot do more than continue in this vein, then I will have an idea of how little I managed to help myself. But I am hopeful that this will finally prove to be a working solution — to draw what happened on paper but then to write about dealing with my anger and resentment and other feelings, which is really what is important at this point, not with the “mere” facts of what happened. If it is, I will be very proud of resolving at least part of the problem on my own.

First of all, I’ll post the sketch, as it will print out above the text as follows.

Who is Smiling at this Image of Torture?

A picture in graphite and later in colored pencil depicting with absolutely accuracy the sort of thing that a “take-down” by a hospital goon squad can entail before they force a person into four-point restraints. The nearly naked person in this depiction is, of course, me at a certain hospital…I am afraid that as I look at this version (correctable) the smile has turned into a grimace on the face of the white woman in the foreground. THat needs to be tweaked a bit…I also note that there are NO SHADOWS… But this is almost more of an illustration than a real drawing, so I will forgive that lapse. Next to come I hope will be a painting.

Here are some photos of details:Detail of Restraints drawing: me

 

Detail #2 of Restraints drawing

 

I realize that it looks like “I” am lying both on my back and on my stomach, but that is an illusion of the photo. In reality those are the backs of the legs, not the front.

 

Enough for now. I need to wake up  and then I want to discuss the book, ANATOMY OF AN EPIDEMIC. Perhaps in my next post.

 

Photos from “Reflections on a Psychiatric Seclusion Room”

Reflection of Seclusion and Restraint : There is hope and freedom somewhere.

NOTE: this is a link to the finished collage, sans border of which I have no photo: https://wagblog.wordpress.com/2011/11/13/reflection-on-room-101-in-ward-d/

I now call this Reflections on Room 101 in The Ministry of Love, as a reference to Room 101 in the book “1984” by George Orwell. The place where recalcitrant prisoners faced torture with the things they feared most in the world.

 

I want to post today some photos from the progress I have made on my large collage of the restraint room (seclusion room) in a psychiatric unit. I must say that it gives me the shakes whenever I work on it, or at least whenever I look at it afterwards, and certainly when I photograph it. But I think that the fear and heart-racing palpitations are slightly diminished compared to this time a month ago. Possibly. That is what I am hoping for at any rate. The process of doing this is my attempt at “exposure therapy” I suppose, because I cannot live with what feels like PTSD any longer. (I know, I know, according to the New Rules, you cannot, by definition, have PTSD unless your life was mortally threatened; unless you experienced a tsunami or earthquake, mass murderer, or Hurricane Katrina, it does not count as “real trauma,” so say the doctors, and they should know, right? After all, they are the ones who defined the illness, and keep redefining it, and who made it up! Well, since they have the initials MD after their names, standing for Missed Diagnoses, I dunno if we can trust them on anything as important as deciding for us what it is that counts as traumatic. It seems to me that WE ought to be the ones telling THEM, no?) Be that as it may, let me change paragraphs and resume the discussion I left off so abruptly above.

Whatever the case, I do suffer with heart-racing fear and sweats and tremors that make it difficult even to take a clear photo of the collage after working on it but whether it is PTSD, I care not.  All I care about is 1) communicating the experience, or at least what the rooms look like, and 2) purging myself of the residual fear.

I don’t want to go on any further with that. It truly does cause me great anxiety. And I prefer to work on the collage and on forgiving the specific people who did those things to me. It is likely that they had grown to hate me, forgetting that I was a troubled and profoundly ill person because I was also loud and frustrating and violent…(treated with violence didn’t make me any more docile, I might add). So  things only escalated and escalated, when from the start their goal was to have a quiet unit that ran smoothly and had everyone get discharged in a matter of days, no questions asked. They did this by helping no one, by talking to no one, and by questioning no one. All they cared about was making sure that everyone stayed “safe” for as long as they were in their clutches. And that they would say so until they left. BUT I said I was working on forgiving them, and trying to see them as tired human beings, flawed but human. It does me no good to get all riled up again.

so I will leave it here, with the photos of the art. I will add only that I plan to redo the curtains, since as it is the blue competes with the sky. Also there will be a curtain rod, and such…But as you can see, it is still a work in progress!

You see the mirror now, and the bed with the restraints? The garden below the window?
No those are not “banjos” on the bed…Look closer. This is a psychiatric unit…
But so is everything it sees and reflects…
Behind the mirror, beyond the window, an open garden gate…

From Memoir Sequel — A Little Bit to Entice?

Maybe not my book, but hands holding her favorite book!

You should know that what follows is just a tiny scribble of what I have written, and it might not even make the final cut once I finish writing the book. But I put it here as a little enticement for readers, a tempting snack to “grow the appetite for more” when it comes out. That said, I must warn that in addition to alerting you that the passage below might end up on the cutting floor, if it does not, it still may not start the book. But here I am hemming and hawing and making excuses. Nothing wrong with posting what I have for now, for the nonce, even though I may remove it later on. Comments on subtitle would be greatly appreciated. If you have suggestions for improving it — the subtitle, i mean — so much the better.

___________________________________________________

BLACKLIGHT:  a memoir of one woman’s fight to recover from schizophrenia

Blacksoup,  tarstew, coffeecombs – submerged in the darkness of things I cannot face by light, inky, skeletal, reaching-out things that pinch and grasp and touch, I fight to swim away, even though away means into a blinding headache. I am sucked down again and then again, until through pounding surf, someone calls my name, almost too faint to hear. Desperate, I thrash upward, cracking the surface of the day and open my eyes. It’s well after dawn yet all the lamps in the room burn brightly.

“Pam, wake up. Unlock the door. I’m here,” someone shouts. The door thunders on.

What time is it? What day is it? I must have plunged into sleep the night before without awareness, for all I know is that I break into daylight like a common mole nosing into what feels like leaf litter and detritus, the remains of an old picnic. Popcorn is strewn across my lap and chair in a white rash.  Resting on its side halfway off the night table, a cup of coffee, now empty, its contents on the carpet. I hoist myself off the recliner with a groan, trying to shake off my shoulders the gargoyles of nightmare. I sleep in my clothes but I never go barefoot –too liable to be bitten by the inanimate fang of a tack or discarded fork– so it takes me a minute before I can home in on my flip-flops.

“Sorry, sorry, sorry,” Wrenching the deadbolt, I yank the door open. “I didn’t hear you. You’re early today.”

“It’s 8:30. No earlier than usual.” Elissa, her dark hair pulled back from her face, carries her big nursing bag and tablet computer. She wears slim, tight jeans and a ruched tee shirt that make her look thirty-five at most, not the forty-something she rarely admits to. She assesses me quickly before coming in and asking, “How did you sleep? And did you eat last night?”

Almost every morning begins this way, not with the bleep, blurt or blare of an alarm, on which I can mash the snooze button. Not even with the sweet sun-rising tones of my favorites song on iTunes, no, my morning begins with this won’t-take-no-for-an-answer Thor at the door. It’s not Elissa’s fault. Sometimes I leave my door unlocked before I cliff-fall into sleep so she can come in on her own the next morning and gently wake me. But not always, and then what can she do but hammer at the doorway of Oneiros, because nothing else will rouse me.

Elissa has been my primary visiting nurse for more than 10 years and she is the one who checks on me every morning, rain or shine, snow or hailstorm. She can read me by now the way a farmer reads the sky, and just one look or something in the tone of my voice tells her when things are copacetic and when they are not. She has seen me well and she’s seen me precariously ill and she’s the first to recognize when I’m somewhere in-between, headed in the wrong direction. Her main job is to keep track of and make sure I take my medications, but when paranoid, I have yelled at her or been snappy and high strung and irritable. She has never taken it personally. I no doubt have driven her nearly to distraction but she flicks all away as no big deal. I must say though that even though I wouldn’t admit it at the time, she has in more than one instance saved my life.

She keeps returning with a smile nevertheless and now instead of telling her how glad I am to see her, I turn away, mumbling that I had a lousy night. It’s true, but I feel like a lout for saying so. Or at least for saying so first thing.

_______________________________________________________

Argh, now all I can see are the faults, but I will leave it as is, and not panic or take it down at once. I have learned that there is no terrible tragedy is letting people see rough drafts or the work-in-progress, though it be only that, a rough draft, not the polished version. If nothing else, it proves that I too am  a human being who must write and make mistakes before editing and rewriting my copy. In fact, I rewrite a zillion times before I am happy with what I have written. Each poem takes at least 20 rewrites, at a minimum, and most take at least 50 while some over 100. As for prose, well, I cannot even begin to estimate how often I rewrite or revise each passage. but needless to say it is well over 50-100!

Not only is there no shame in revision, I take great pride in how much rewriting and revision I do. It is a point of honor with me that I take this much time with my writing and do not hurry it — ever.  People who believe that the first words that come out of their pen or mouth or computer are sacrosanct are likely to not be real writers, only dilettantes who play at writing, but never take it seriously. Who want to write, but who never really do so, except for in the pages of a journal or doggerel between friends and family.

Do not get me wrong, I do not disparage this sort of writing. In a sense ALL writing counts as writing. And all writing is good for a person. But not all writing is publishable or suitable for the public consumption, and that is what I mean by writing done by a “real writer.” Someone for whom writing is what life is all about. Someone for whom life would not be worth while if she could not continue to write. Someone who knows the value of editing and revising and rewriting and who knows that a good editor can a writer’s best friend.

Poems about Schizophrenic Symptoms: Word Salad and Delusions of Grandeur

Poems can express many ideas and experiences. In my first book of poems, We Mad Climb Shaky Ladders, part of CavanKerry Press’ Laurel Books literature of illness series, I tried to express how I felt both during psychosis and afterwards. I also often tried to put myself into the experience of others who experienced symptoms that I might not, but which I could imagine.

One thing I know, having had this illness for so long, is that misinterpretation is rife. I mean things when I do things, just as anyone else does. But people simply make assumptions about my behavior and forget that they might need to ask why I do what I do. I have often asked others why they did whatever strange or seemingly outrageous thing they did, and lo and behold there has always been an understandable rationale behind it. For instance, when I stripped naked in that freezing seclusion room, I was neither “acting out” nor totally around the bend, no, my reasoning was that if I were naked they would have to give me something to cover myself with, i.e. a blanket, which is what I had been begging for all along. But they never asked me why I had taken off my clothing — a flimsy tee shirt and lightweight jeans. They just assumed — whatever they assumed. Ditto for almost every other interaction I had with them, and the same almost uniformly went for other people when they behaved in a way that was somehow contrary to expectations. The meaning of their actions was reasonable, given the context.

I tell you this because in my poem, Word Salad, even though it appears to be, well, “word salady” and incomprehensible, in truth there is “method” to it, and in fact if you read it with a mind towards understanding the links, you would appreciate them. But you might have to “surrender” to getting it, and let it in without trying to rationally, intellectually understand. Only afterwards could you perhaps try to figure out what precisely is being done and said in the poem. One clue you might need, if you have not been subjected to this directly is that often, at least in the past, “patients” of a certain kind were asked to interpret proverbs. “Can you tell me what, ‘A rolling stone gathers no moss’ means?” or “What does ‘People in glass houses shouldn’t throw stones’ mean?”

As for Grandiose, the same thing holds. Read it aloud and try to get the sense of it, how it reads. Then you may in fact understand what is going on “in one blow,”  so to speak. It is full of double entendres, on purpose. Remember that “live” can be pronounced in two ways. Both of these hold.

WORD SALAD

“Word salad,” a term used for the completely disjointed, incomprehensible language sometimes seen in schizophrenia

Unpinned, words scatter, moths in the night.                                                                      The sense of things loses hold, demurs.                                                                     Everything means. Numbers soldier
with colors and directions, four by four
in a pinwheel: this is the secret wisdom.
I inscribe it on sacred sheets of paper.
The Oxford Dictionary holds not a candle.
The self reduced to a cipher, a scribble,
the Eye is all, with a Freemason’s lash,
and 26 runic hieroglyphs to share
how a stitch in time saved the cat
and if a messy rock gathers no stones,
clams must surely be lifted higher
by the same rising boats. Why, why not throw
glass tomes at grass huts? It is a question
of propriety: grass is too dignified to lie down
before gloss. Whirligig! How to pull the center
back into the world? It would take all
the OED to recapture the moths, all Harcourt’s
English Grammar to pin them again.

GRANDIOSE 

He says:
I was always more important than you though
with your cutting me down to size quarrel
about just who I thought I was. I thought I was
with my long dark hair and beard and rough
working clothes John the Baptist, prophet of God
wild man of the wilderness and would have
to preach the word of a savior I didn’t quite
believe in. I mentioned my conviction to a friend
who told me to make friends with a mirror,
discover which John I really re-incarnated. Lo,
I looked and saw the more famous than Jesus
John staring with his small important eyes
behind his too small eye-glasses at me staring
into the mirror at myself, yes, I wrote the songs
you grew up on: Yesterday, Give Peace A Chance,
Eleanor Rigby— yes, I was the one you swooned
over and screamed for, yet now you only shriek
at me, taking me down from a peg on the wall.
Why do you yell, Get lost, baby? Imagine all the people
who would rejoice to see me live once more.

Video of Poem: “How to Read a Poem” plus Update

I am not sure what to think of this video. I certainly did not give permission for it to be used, nor did I approve of the final product. But I would welcome all opinions, should anyone wish to share. Please do not click on Like or Dislike buttons to give opinions. That only tells me you dislike my posting it, not the video itself…But maybe I am too sensitive.

I see that it will not insert directly here so I am placing the link to it here instead.

HOW TO READ A POEM: BEGINNER’S MANUAL

 

First, forget everything you have learned,

that poetry is difficult,

that it cannot be appreciated by the likes of you,

with your high school equivalency diploma

and steel-tipped boots,

your white collar misunderstandings.

Do not assume meanings hidden from you:

the best poems mean what they say and say it.

To read poetry requires only courage

enough to leap from the edge

and trust.

Treat a poem like dirt,

humus rich and heavy from the garden.

Later on it will become the fat tomatoes

and golden squash piled high upon your kitchen table.

Poetry demands surrender,

language saying what is true

doing holy things to the ordinary.

Read just one poem a day.

Someday a book of poems may open in your hands

like a daffodil offering its cup

to the sun.

When you can name five poets

without including Bob Dylan,

when you exceed your quota

and don’t even notice,

close this manual.

Congratulations.

You can now read poetry.

https://www.facebook.com/video/video.php?v=1759323499617

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As for the update, well, I sent most of the important material from which I derived the last blog post about the restraints episode to the Office of Protection and Advocacy and by the afternoon of that very same day, I got a call from them telling me that they were going to do an investigation! Not maybe, but yes. This was quite a surprise. I did not expect to hear from them so soon, much less so definitively. They do not take every case after all,  but pick and choose from the many complaints that come their way. I have run into so many roadblocks that I was afraid that there too I would be shoved aside for other more important matters. But no, I think they too found this matter outrageous.

So I will keep you posted as to what happens. They want access to my chart, which I will give them, but I will also fax them the pages from my journal too, as I want them to have contradictory accounts to counter what the “official” record says. Though that says enough that is not quite legal by itself.

I have been cleaning my apartment for 2 days and it is still a wreck, but I need to frame all my artwork for a show I will be doing in early November, at OpenStudio Hartford and I cannot do anything until I have space in my apartment. It is getting better, at least there are “paths” to walk through! But there is still a lot to be done, and I am already very tired of cleaning. How on earth do I make such an atomic mess of things so often? So needless to say I cannot write  much today, but I did want to let you know of this latest development.

TTFN or TaTa For Now

Psychiatry and Authority: Restraints Update

 

 

 

I want to update my “On Psychiatry and Authority” post, especially about what they did to me at “MIddlesex Hospital, which I can now do with more accurate data. I gleaned a lot of the following directly from my records, meaning both the nursing and progress notes and the “event” notes, which should have been written after each and every incident in which they felt obliged to use measures against me involving involuntary seclusion or restraints, including such things as: physical/bodily/painful holds, physical/bodily/forced escorts, physically preventing me from leaving a “time-out” room, i.e. a seclusion room, as well as a locked door seclusion or the dreaded four-point restraints . I have also used my own journal writings here as counterpoint, some entries of which were penned as soon after these things happened as possible — that is, when I could obtain a writing implement.

The first time I wrote about the particular incident I focus on here, I did not understand why I was naked. Having read my entire medical record from the stay, I now understand more about what happened, so I will start this account where it really began, somewhat earlier in the day. Also, and this is important, while they perpetrated a criminal act on me in this incident, there were others later ones as well. During those, I am described in words that make me sound as if I have gone something near berserk…though not in those words of course. Now, there is no context given, nothing is said, not a word, of what the staff is doing TO me or with me at the time that I am going so wild, but nevertheless, the chart describes me as biting and kicking and screaming and peeing on the floor and smearing urine all over the walls…and then there are repeated use of restraints and locked seclusion where neither were “necessary” and were always destructive and traumatizing. Well, unfortunately I have no journal entries after that first time. Why? Perhaps because by then they had drugged me up on Keppra (having decided I could not take the 2 separate ones I came in on though they worked fine and without side effects ) an anti-seizure med that made me so dizzy I literally could not walk, and my vision so blurry that I could not write even if they had not prohibited the use of all writing equipment. So I can recount here only the most egregious incident, the one that I believe triggered for all the others that followed, the one after which “all bets were off” as to any future “behavior” on my part, and from which I emerged so traumatized that I didn’t give a hoot what they did to me after that…

Before I get to  it though, I want to briefly recap where I am in my struggle to recover from the trauma that this stay at Middlesex Hospital occasioned, which only increased the trauma already inflicted 6 months before at Manchester hospital. Up until the night before last, as you know, my state of terrible upset had been growing worse and worse, so that I’d gotten to the point where I could scarcely think about my 6 week stay at Middlesex without becoming nearly hysterical with trembling and anger and anxiety and terror all mixed up together. I  felt as if death impended, my heart pounding wildly,  fear screeching like a car swerving at high speed until it nearly hit a bridge abutment. Every night, every day it comes back even now (new edits 3/2012) as if happening again. Then one night, I wrote the blog entry about Trauma and Acceptance, and I began to try to think about things differently. I realized that I could parcel out thinking about Middlesex little by little so the trauma of it didn’t have to eat me alive. I realized that I might be able to save my sanity, and spare my life from total destruction at the same time, if I decided to accept what I could not change, the first step of the Serenity Prayer.

Wonder of wonders, after two days of not letting the trauma appear on my radar screen, except insofar as I gave a talk about it for the Farmington, CT, NAMI book club last night, which included reading the Acceptance blog entry as its conclusion, I have made an astonishing discovery. Up till now I had had almost complete amnesia for the Middlesex hospitalization. However, it seems that as I remain or try to remain calmer, certain episodes are coming back to me. Not fresh, not by themselves, no, but when I read in my journal or even in the records something that I did not recall on my own nor even believe was true it feels, well, possibly real, and I can just begin to “get” a sense that indeed it feels familiar, that perhaps I did do that, did say that, that it did happen, even if I would not have remembered it without the journal jogging my memory. I am wary of induced false memories, but in this case since I have records of the bare bones of what did in fact happen, I have to try to trust that at least some of what I am retrieving is not pure confabulation woven from only my imagination.

I cannot bring my mind any further down that memory path yet. But I suspect now that I formed some memories after all, that they are simply buried for some reason, and that perhaps the trauma and fear have kept them from me. Now that I can relax a bit and not feel so angry and terrorized by my amnesia and by the one clear memory I have, perhaps some, if not all, will slowly return. Since I prize my memories — they are all I have and without them I have had no life, — I want them back, as many as possible bad as well as good.

Now let me continue on to the account of  Middlesex hospital in late April, 2010 and the first time they put me in 4-point restraints.

During the MD visit the morning before, Dr N wrote: “Patient later ..(?) ..to me that she didn’t trust anyone, that no one wants to help her and she is being punished by staff. I repeatedly said that she is not being punished and she is projecting….Patient escalating tension with staff. Rigid. Wants to die. Wants to sign 3-day paper to leave.” (It is not clear what he means by “later” — did he write this after the episode of restraints, when I did in fact tell him that they punished me? It seems likely. IN which case he did not listen to anything I said…)

RN note 1:30 PM: “Alteration in thought: Patient continues on constant observation. Continues negative, irritable, testing limits. Refused initially to shower, then changed mind and agreed to, then wanted to walk out of shower into dayroom naked. Agreed to dress after informed security called to unit…”

About these notes: one, what was I projecting in thinking they wanted to punish me? What? And it is typical that Dr N blamed me for “escalating tension” with staff. I wonder if he ever saw how they worked, saw in action the mechanism by which they’d cause an  escalation. 2) Most likely, in this case, I was threatened that if I did not shower I would not get off 1:1, so I “changed my mind.” And it seems to me that if someone “wanted” to get out of shower and walk into dayroom naked, it is a matter that the nurses could handle and ought to. I weighed all of maybe 98 pounds then. And if they had closed the door and made me dress, they could have. Why call security unless they wanted to threaten me, terrify me? That was neither compassionate nor caring. Methinks it was, aha, punishment.)

Moving right along…

All the details  that follow are “accurate” insofar as they are derived from official documents or my journal. Accurate in that sense. But remember that in the records, NO context is ever given, the behavior of the staff is rarely described, or only in the briefest and most self-serving ways. NO context is even given to MY behavior.

The nurse who wrote up the night’s notes says that I was angry the entire evening and demanded continuously that she call the on-call doc to discontinue my 1:1 status.  For some reason she writes that I was “unable to follow directions” when she tried to assess me for, I presume, safety, perhaps so I can get off 1:1. I don’t know what she is talking about here, but it is typical that the nurses cared only about a patient’s taking orders and following directions.

Anyhow, at around 7:30, she wrote that I “walked into the dayroom” and according to the RN notes, without any provocation (which is highly doubtful) began shoving and turning over chairs and then picked up the patient trash can and put it over my head. Although at that point the staff told me to “walk with them to the “time out room” I refused and “went to bed instead.” (That was written in the chart: I WENT TO BED INSTEAD.) Now, you would think that this would be fine, after all, would not they want me to go to bed and calm down? But no, I had not “followed directions” and so of course “security was called and patient required security to carry her to time-out room as she refused to move or walk.” Remember that this “time-out room” is exactly the same thing as the “seclusion room” — it is the same room, with the same “withouts” — without heat, without windows, without anyone to talk to, without blankets, without a toilet, without anything to make one comfortable…just a thin mat on the linoleum floor, unless they have taken it out. So they barged into my room where I had gone to calm myself down, and picked me up bodily and carried me to the seclusion room. That means by definition that they physically restrained me and physically, forcibly escorted me to the seclusion room where they prevented me from leaving, all of which are NOT permitted except in the case of “severe and imminent danger to self or others”…(so an event note should have been written up and a physician’s orders should have been gotten). There I took their Ativan and was told that I had to stay in the room for 30 minutes.  Why not in my own room for 30 minutes?  Because time spent in the time-out room is a punishment. Parents make children stay in a time-out room (usually their bedrooms!) when they don’t obey. Why? Because that’s their punishment. But staff doesn’t punish. No, they don’t punish…

Now this is how I remembered it the next morning in my journal: “I had been told to go to the time-out room, which I did voluntarily…” (apparently I did not remember that I had been physically carried there, but there is some confusion in the records too, because I went and then left and then was carried back…). “But it was cold and they wouldn’t give me a blanket so I didn’t stay long…This only led to more goons pushing me back into that cold and sterile room, this time strong-arming me and forcing me to a seated position on the mattress before quickly leaving but not locking the door.”

The nurse wrote it this way: “Patient refused to stay in time-out room, attempted to shove staff, kicked at staff to get out of room. Patient was instructed several times to sit on mattress and stop pushing at and kicking staff. Patient refused. Seclusion door locked at 7:55pm…”.

At this point both records agree that I stripped off all my clothing. But the official records state only that fact, and that I “was changed into hospital garb” but in my journal I write something entirely different and rather revealing: Left alone in that cold and sterile room, I decide “they’d have to give me a blanket if I was [naked] so I quickly undressed and just hid under the mattress for warmth. This caused a stir for some reason and I was forced to put on hospital pj’s and lie down on the mattress. This would not do, not without a blanket which they continued to refuse me so once again I got up and tried to push through the woman barring the unlocked door. She called for reinforcements and they came en masse. (Note: I spelled this “unmasse” — a dyslexic spelling of the first order. This is a symptom of my acute neuro-Lyme disease, since I was always a first-rate speller and would never have had difficulty with “en masse” had I not been in the middle of a flare up… as they knew full well).

“At this point” my journal continues, “they again subdued me and told/asked me why I was fighting. I said [it was] because i needed someone to talk to. That was all I wanted, just someone to talk to. The security guard seemed taken aback. All these personnel hours wasted when all I wanted was one half hour of one person’s time? It seemed to strike him as ludicrous as it did me….

“Why don’t you just ask to use this room when you feel anxious or upset?” he then asked me.

“I do, I have!” I replied

“Well?

“They always say it has to be reserved for an emergency.

He seemed completely flummoxed by that reasoning but there was no arguing with Policy so he fell quiet. Finally they decided to leave, telling me to be quiet and lie down.

I did. I did. But I was cold and I begged for a blanket.

“Sorry, it is too dangerous. You will have to sleep without one.”

That was it, I’d had enough! I dashed at them head first and they parted, only to grab my arms and try to stop me. Someone twisted my right arm and held it behind my back, but I knew how to get him to stop it, so I tried to bite him and he briefly loosened his grip. I twisted my own arm back to me and my left pinky, held, closed tightly onto something, hooked so tightly it wouldn’t budge. My legs, the right one, grabbed the thin leg of a woman behind me, making her lean back off-balance and lose her grip on me. Then I switched to holding both my legs in a death grip around the legs in front of me. It didn’t matter one iota that [I had taken off my clothes again to get a blanket and] was naked…Anyhow, they eventually overpowered me and got me onto the hard floor, my cheek on the dirty linoleum and breathing dust. At first I struggled but then I realized that the less I did so, the less they applied pressure (there must have been six people or more holding me face down on the floor,  one of them practically sitting on me…).

Finally I stopped resisting and they let me sit up, finally giving me a blanket or sheet to cover myself with. The room cleared as everyone left except for one nurse, who was on one to one with me. She apparently was now allowed to talk with me and we conversed calmly. The door to the seclusion room was also now open.

However, there was some soft talking outside the door and I heard someone walking down the hall and opening a cabinet. I had a bad feeling about it and asked the 1:1 nurse what was going on. “Don’t worry. They are just getting you some meds or making up a bed for you.”  This gave me a very bad feeling, and I suddenly understood what was going on, “Uh uh, they can’t put me in restraints, I am calm and it is illegal to restrain someone who is calm. You know that.” I said that again loudly, loud enough so whoever was down the hall could hear me.  I began to tremble, but forced myself to remain as composed as I could. Another staff member then came into the room and asked me to come down the hall. Did I need an escort or could I do so myself. “Oh I can walk by myself. But you can’t put me in restraints, I am calm and it is illegal.” Nevertheless, I followed her to the empty room — I felt like “dead man walking” when I saw indeed that they had fastened restraints on the bed. The room was filled with staff members and security guards. I told them over and over that I was calm and willing to take PRN meds. I said I knew they were punishing me and that they knew it too. No one said anything except to reiterate that they would assist me if I did not lie down on the bed myself. I was so terrified that they would assault me and hurt me, terrified of the fear itself, that I simply got it over with, lay down on the bed, naked, and let them do what they wanted to do, gritting my teeth when they removed the blanket that was covering me. Well, here is what I did not remember, the account after that from my journal:

“Well, you know that despite my complete lack of resistance, they shackled me 4 points (badly as their restraints did not actually fit the bed — restraints are supposed to keep the arms at your sides not below the level of the bed, and your legs are not supposed to be spread-eagled! I protested this fact but not so loud as to disturb others [when they released me] my back hurt so badly I could barely walk and once more my scapula muscles felt as if they had been separated.”

“I plan to sue you for doing this to me.” I said calmly to all as I left the room. Nobody reacted…I woke in severe pain, the muscles in my chest felt torn from those that connect it to the shoulder, the pain went clear through to the scapula.”

Nursing notes were rather different, and I think were written after the fact, and hastily, perhaps not exactly ‘fact-checked” for accuracy after all. [Did a family practice doctor really see me? I do not believe so…why else would I not tell anyone about the pain, which she reports as non-existent.) But here is what she writes about the “scuffle” in the seclusion room:

“Patient was changed into hospital garb which she also stripped off. she demanded a blanket which was not given due to concerns about her tying it around her neck. [Note that I was ALWAYS under one to one surveillance!] She was encouraged to put the johnny back on and she refused. After staff left the seclusion room, patient placed mattress over herself where no staff including her 1:1 could visualize her. When staff entered room and removed mattress, patient again darted toward staff and attempted to flee. Pushed at staff, then kicked at staff, and attempted to trip staff  wrapping her legs around RN’s leg. During the scuffle patient ripped bandage off her leg and yelled, “I have AIDS. I didn’t tell anyone that before!” She refused to remain in locked seclusion without attempting to harm others. Patient covered with sheet and walked to empty patient room where 4 point restraints were applied. Patient continued agitated initially then was quiet lying still.” [Patient can come out of restraints when able to refrain from aggressive behavior towards staff and property and can follow directions.]

Now you get the picture. I was put into restraints as punishment, but as an excuse for it, they made up a reason, which is is how I can get out of them: stop being aggressive towards, 1) staff ( remember who dragged me into seclusion room? I had gone to my room and they dragged me out of it just to teach me a lesson in the punishment room! 2) property – I was a danger to property… I do not think somehow that danger to property is one of the reasons a person can be put in restraints in this state or this country. And the danger was that I had put a wastebasket over my head! 3)  following directions, well I won’t even go there. Just look at those “justifications” for keeping me in restraints and you will see just why I know they “had it in for me” that particular episode, but in fact were trying to get me most of the time I was there.

Be that as it may, I have contacted the Commissioner of Mental Health, and hope to contact the Office of Protection and Advocacy, which oversees the private hospitals in the state as opposed to the state hospitals, though I do not see why the commissioner is not involved in any hospital that takes state money, as all the private ones do…And seeing as I am a Medicaid patient when hospitalized, I would be a state patient were it not for the private hospitals being forced to take such patients in this economy, whereas years ago they could pick and choose, and did.

Finally, the MD’s “event note” observes upon exam in the restraint room that  the patient is “generally agitated, very verbal, lying in bed with the help of staff and security to calm her down…” I beg your pardon? Calm her down?! I was being restrained, one, and two, I was being tied to the bed with my arms over the edges of the bed, below the level of the mattress, and my legs were spread-eagled –I was naked, remember? and all of them knew it.

So that is all I have to write tonight. I am appalled. What sort of people could do that to anyone? Who were they once, and how did they become so jaded and cruel? Surely, as nurses, they must have once been idealistic and good-hearted and compassionate. Most people who go into nursing are and I doubt that many go into it for the money or for any other reason than that they care about people. I simply have never met any young nurse who was not idealistic and caring, but I suppose there might be one or two. So what happened to this group? Could it be their own “society” is not supportive, is backbiting and so lacking in cohesiveness that they take out their own frustrations and lack of positive feedback on those patients who least please them?

I dunno, I have been told that this mechanism is sometimes at work on units where staff behavior is out of control in such a way. But what made them in fact so much into control and coercion at all? Why were they not themselves empowered by compassion and kindness, which would have fed them better as it fed the patients better as well? How did it come about that they learned the wrong lessons? I don’t know, and probably will never know. But I did catch a sense of these strengths in one or two of the nurses, just buried in fatigue or long ago burned out…

Too many were too personally invested in the patients liking them or in behaving for them in such a way that made their jobs easy! That was stupid and nonsensical. Why should the patients have to be or do anything for the nurses? The patients cannot control their illnesses and staff forgot that in their own need to be in control and to have their own need met by their patients. I think  that is what it comes down to: at Middlesex, the staff’s needs were not being met by each other, or by the supervisors and colleagues, so they looked outward, and who did they expect to meet their needs but their patients, who could not, and could never do so. So they tried to make them, force them to. Or at least to toe the line and make each day quiet and easy to get through. What a farce. What a lousy place to be sick in, what a sick place to try to get well in…

That’s enough for tonight.

Imaginary Interior with Mirror and Red Chair…plus

Here is a colored pencil nighttime interior, wholly imagined and done without model objects to work from except that the red chair happens to be one that “lives” in my room. You may not be able to tell, but the large mirror on the table reflects one that is meant to be implicit behind the person drawing (the hand in the foreground) which in turn reflects the one on the table, and that reflects it, and so on…). Also, on the table is a photo that purports also to be, and is in fact, one of the artist — me — drawing as well. So you see there are a lot of tricks involved, though I do not think the picture is very expert. The perspective was not meant to be accurate, by the way. It is sorta folky…I simply am trying things I have never done before, like furniture and scenes. After all, you have to start somewhere.

I am also working on learning “realistic pencil portrait drawing” which is equally difficult but in a different way as it involves minute observation and challenges my eyesight too, at least at the moment. In fact, learning both skills are good for me.

I wrote a new poem two nights ago, but alas, I cannot share it here yet as then I could not submit it to a journal. I can only advise those interested in my poetry who have not read it and who have not seen my book WE MAD CLIMB SHAKY LADDERS, to check out the page I have set up (see above) with a number of poems taken from it. I you like those you may also be interested enough to perhaps purchase a copy (and make me a wealthy — hah! — woman in the process). I am hoping eventually to find a publisher for LEARNING TO SEE IN THREE DIMENSIONS, but I admit that I haven’t really tried. In fact, I have been so busy that I haven’t tried at all! I just keep writing and adding to it.

Anyhow, I do not know how many of you know of my best friend, Joe C, (the old blog readers did) but he is dying of ALS, Lou Gehrig’s Disease, after 4 years, 3.5 of them approximately, on a ventilator ( that is to say breathing by means of a tracheostomy tube attached to a mechanical respirator). I do not know how long he has, though the situation is really dire in a way that is difficult to talk about. He refuses to agree to a Do Not Resuscitate (DNR) order, though there is nothing they will be able to do for him except torture him if he does not…Oh god,  he is in such awful straits, yet so wants to live! It is so tragic… The only good thing right now is that Dr O, that wonderful woman and my former psychiatrist, who was so kind and helpful to him, and of course was to me for so many years, was ordained a minister after she moved away from CT and she is going to visit him tomorrow, if she can…and see if she can help him.

You know, my absolutely biggest fear for Joe is not his dying, but of his being afraid, and that is where I think she can talk to him in a way that he will profit from, because he listens to her, and always has, in a way that he never has listened to me.

Joe basically responds best to female authority figures, which is strange given that he has a terrible relationship, really none at this point, with his mother. I no longer mind this, I am used to his not taking what I say as having any merit. But if Dr O is able to help, I just want him to get to that place where he can accept his approaching death and is not scared…

All this is by way of saying that if I am silent here for a while, please think of Joe and of me, and send him your prayers? Thank you, all of you.

I am putting up a photo Joe and me just after he was diagnosed, when we were at the Lahey Clinic for one of his appointments there, and then one of the few that I have with him at the hospital where he currently lives. One when he was still able to smile. You will be able to see the extreme changes in him, but to me, I have always only seen the “same ole Joe!”

Joe C and Pam in 2006, December
Joe and Pam November 2007