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Involuntary Outpatient Commitment or Assisted Outpatient Treatment: Kendra’s Law

Please note that this post, while distinctly against such excuses for treatment as Involuntary Outpatient Commitment, AOT or anything like it, it intends no disrespect for unfortunate victims of crime like Kendra and others for whom these eponymous laws have been named.

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This afternoon, I testified against a bill raised in the Connecticut judiciary committee, which proposed Involuntary Outpatient Commitment. The provisions of this bill were so egregious, so outrageously discriminatory against those of us with psychiatric illnesses, and carried such potential to cause more harm and trauma than treatment, that despite my grief and exhaustion, I felt I had to write something for the judiciary members to read, and then to cut it down to a 3 minute oral presentation to read before them today…

First of all, let me recap the worse provisions of the bill, rather than making you read the whole thing (Though it is actually a revision of a bill, and so is not long, a paraphrase is always easier on the eyes, so to speak.) First of all, instead of the two psychiatrists needed to commit a person to the inpatient stay of 15 days observation — a PEC or physician’s emergency certificate, which is the first step of any inpatient stay — an outpatient commitment requires only a single psychiatric opinion, and the doctor need have one year’s post medical school experience to be considered competent enough to evaluate any patient for such purposes. Not only that, but he or she can evaluate a patient at much at 10 days before the hearing and that would suffice as valid, even though everyone knows much can change in 10 days. After all, people are admitted to hospitals inpatient these days and are expected to be discharged within 2-5 days on average, at least in Connecticut. Then, the next outrage against a psychiatric patient’s civil rights is that the treatment providers will be permitted to speak to ANY family member or anyone who knows the patient well, about the patient’s issues and treatment history. No matter that the provider may not know anything about this family or these friends, nor what their relationship with the patient is like!

Worst of all, get this: Once a conservator is assigned, and forced medication is arranged, the police or ambulance may be called and the patient transported to a location where he or she will be forcibly medicated against their will, i.e. restrained if necessary and injected in the buttocks (“dignity preserved” hah!) most likely with some depot drug like Prolixin or depot Risperdal that, no matter how horrible the side effects are, will remain in the patient for a long time.

Despite this, the provision remains that this can remain in effect at most 120 days. Go figger. You can forcibly medicate a person for 4 months, and presumably (I doubt it) get them well for that long by brutalizing them. But after that, they can do as they wish, which likely will be to NOT take the humiliating injections or the medication by mouth either. So what was the point? Usually, a person will take a drug that makes them feel better, barring painful side effects. So if the drug is rejected, 75% of the time it has been shown to be because of intolerable side effects or simply because the drug doesn’t work….So what good is IOC then?

So, in response to this proposed — well it is outrageous, ill-conceived, unjust, and just plain stupid… I wrote the next 2 pieces. The first is my oral testimony, which I cut out and edited from the second, my longer written testimony, which I had to leave with the judiciary committee as it went on much longer than the 3 minutes oral testimony time each person was allotted. Also, when I wrote the written testimony, I had not been aware that there was actually a proposal to physically restrain and inject an outpatient. So there are those differences between the oral and the written forms of testimony. Both were extraordinarily difficult to write and to read as you will see, and will no doubt understand why, especially if you are a long time reader and remember all that I have written about the traumas I have experienced at two hospitals in CT that begin with M…

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Oral Testimony before the judiciary committee

March 29, 2012

Opposing sb No. 452

an act concerning the care and treatment of persons with psychiatric disabilities

Good  Afternoon, members of the Judiciary Committee.  My name is Pamela Spiro Wagner. I am a lifelong resident of Connecticut, currently living in a suburb of Hartford. As a Brown University graduate, elected to Phi Beta Kappa in 1975, I  attended ____ Medical School until psychiatric difficulties, later diagnosed at schizophrenia, forced me to leave. In 2005, I co-authored  the memoir, Divided Minds: Twin Sisters and their Journey through Schizophrenia, which was a finalist for the CT book award. I also wrote a book of poems, published in 2009.  As a visual artist, my work has been exhibited in Norwich, Hartford, Wethersfield and on the internet. I am here today to oppose SB 452, an act concerning the care and treatment of persons with psychiatric disabilities. This bill  proposes to introduce involuntary outpatient commitment to CT.

Involuntary treatment doesn’t work, period; it usually causes more harm than good.

In 2009,  deemed psychotic and dangerous to self, I was hospitalized against my will at Manchester Hospital.  Instead of my usual medications, I was given  Zyprexa, which has severe side effects. I refused it and decompensated. The psychiatrist decided a judge would force me to take Trilafon, a drug that made me miserable. If I refused I would get  an injection of Haldol in the buttocks.

Nonetheless, I refused. I also refused to take down my pants for a needle full of Haldol, so I fought them when they approached. After a few such encounters they started calling a code — “Dr Strong” — to bring in the security team of men and women who invariably assaulted, subdued, then stripped my clothing off, restrained and injected me, despite my terrified screaming and fighting. These confrontations along with liberal use of 4-point restraints to shackle me to the bed, or solitary confinement in a locked and freezing seclusion room without even a mat on the floor, happened so often that I literally lost track of time. As a result of these traumas I now suffer from PTSD.

This is what involuntary treatment leads to. According to SB 452 , police could be called to transport a patient to a location where she could be restrained and forcibly injected. That is inhumane. Involuntary Outpatient Commitment is just coercion and brutality masquerading as help.  This is not how Connecticut should be delivering its mental health care.

Thank you for your time and attention.  I would be more than happy to answer questions.

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Note: I wrote this before I learned that the SB 452 bill actually proposes to permit the involuntary transportation and forcible restraint and injection of an OUTpatient…

Written Testimony before the judiciary committee

March 29, 2012

Opposing sb No. 452

an act concerning the care and treatment of persons with psychiatric disabilities

Good morning members of the Judiciary Committee. My name is Pamela Spiro Wagner. I am a lifelong resident of Connecticut, currently living in a suburb of Hartford . As a Brown University graduate, elected to Phi Beta Kappa in 1975, I  attended  _____Medical School until psychiatric difficulties, later diagnosed at schizophrenia, forced me to leave. In 2005, I co-authored  the memoir, Divided Minds: Twin Sisters and their Journey through Schizophrenia, which was a finalist for the Connecticut book award. I also wrote a book of poems, published in 2009.  As a visual artist, my work has been exhibited in Norwich, Hartford, Wethersfield and on the internet. I am here today to oppose SB 452, an act concerning the care and treatment of persons with psychiatric disabilities. This bill  proposes to introduce involuntary outpatient commitment to CT.

Involuntary treatment does not work.  Over the short run, you can make a person take medication (which is what this is all about). You can threaten to hospitalize her “or else” and frighten her into swallowing a pill for a while. And you can medicate her forcibly if she ends up in an inpatient setting.  You can do so despite the horrendous side effects she may experience – from intolerable sedation or enormous weight gain and diabetes to the agonizing restlessness known as akathisia, the potential development of a disfiguring movement disorder like tardive dyskinesia, or just seemingly minor problems such as increased dental caries resulting from a chronically dry mouth. Not to mention a score of other severe side effects I haven’t even mentioned.  It may be that in the short run, the patient will break down in the face of such measures and begin to accept treatment “voluntarily” – or seem to. Perhaps she may even seem to “get better.” But I am here to tell you that despite appearances of success, involuntary treatment is the worst possible thing you can do to a person with a chronic psychiatric condition. Symptom improvement is usually temporary.  For any number of reasons, as soon as you cease forcing a person to take pills, she is more than likely to stop taking them, especially if side effects are objectionable or coercion a major factor in her decision to take them in the first place. If she has been treated against her will, either as an in-patient or in an outpatient setting, the effects of the trauma involved  may be permanent. I know, because I have been there.

Although I am in outpatient therapy, I have not always been and am not now always compliant with medications, especially those that make me feel deadened or bad, even when they seem to alleviate the worst of my symptoms. If a medication makes me feel horrible or worse, makes me feel nothing inside, I usually refuse to take it. I tend to agree with those who say that sometimes the treatment can be worse than the disease. Still, while in-patient, I have  often been subjected to “forced medication hearings,” which I lost, the deck being inevitably stacked against me. In 2004, at the Hospital of St Raphael’s in New Haven, I was not only forced to take Zyprexa, a drug that induces severe obesity, high cholesterol and diabetes, but in addition, the probate judge, on the instigation of the in-patient psychiatrist, ordered that I undergo involuntary ECT, otherwise known as electro-shock treatments. All of this was in the name of  “helping me.” No matter that I did not want it, nor that my neurologist was completely against it, fearing brain damage. Nothing mattered but the wishes of that one psychiatrist. That single psychiatrist, whose word and opinions counted far more than anyone’s though she had known me all of 3 weeks.

One of my most recent experiences with involuntary treatment was at Manchester Hospital. This was so horrendous that in combination with an even more brutal experience, 6 months later, at Middlesex Hospital in Middletown, I developed PTSD, posttraumatic stress disorder. Because Middlesex Hospital has already been investigated and cited by the Office of Protection and Advocacy and the Department of Public Health for improper use of restraints and seclusion because of what they did to me, I would like to tell you about the Manchester Hospital experience, as I believe it will give you a better “taste” of where Involuntary Outpatient Commitment, when taken to its logical conclusion, can and must lead.

I was  hospitalized against my will at Manchester Hospital in 2009 on a 15-day physicians emergency certificate (PEC).  In the first few days there, I was summarily taken off the two-antipsychotic drug combination, plus the anti-seizure meds and an anti-depressant I came in on. This  “cocktail” had worked for me since 2007 without side effects so it was one that I was willing to take. I also felt it helped me function better than I had in years. The psychiatrist at this hospital decided, however, that “since you are here, your current meds aren’t working, so I am going to put you on something else.” Did it matter to him that I had already been tried on nearly every other antipsychotic drug on the market, old and new, and none worked as well and with as few side effects as the two I had been taking? No, he was the doctor and he knew better than I what was what. Moreover, whatever he said became law.

So the “offending meds” were removed and I was again told I had to take Zyprexa, a drug that I hated because of the severe side effects. Over the next few days, I continued to refuse it, and naturally, I decompensated further, especially since by then I was taking no antipsychotics at all. A hearing with the judge was scheduled and the psychiatrist decided at the very last minute that they would force me to take one of the oldest neuroleptics in the PDR, Trilafon, a medication he had no reason to believe worked for me. Had he asked I would have readily explained to him it made me exquisitely miserable, even at the lowest dose. Instead, he said only that if I refused it, I would be given an IM injection of Haldol in the buttocks –as punishment. Or so I felt.

It may seem that I am making unfounded statements about this psychiatrist’s intentions, but think about it: when one is told that the “consequences” of refusing to take a pill will be an injection of another awful drug, how else is one to “read” it but as a threat of punishment? How would YOU read it?

Well, I was not going to take Trilafon, not when I knew how horrible the side effects were that I would suffer as a result. So I refused the pills. I also refused to lower my pants for a needle full of Haldol, so I fought them when they approached. After a few such encounters they started calling a code — “Dr Strong” — to bring in the security team of men and women who invariably assaulted, subdued, then stripped my clothing off, restrained and injected me, despite my terrified screaming and fighting. These confrontations along with liberal use of 4-point restraints to shackle me to the bed, or solitary confinement in a locked and freezing seclusion room without so much as a mat on the floor, happened so often that I literally lost track of time. As a result of these traumas I now suffer from PTSD.

Why do I tell you this? Because this is what forced medication and involuntary treatment can lead to much more often than you want to believe. If sb 452 passes and Involuntary Outpatient Commitment is instituted, how do you propose to treat someone who does not want outpatient treatment? You cannot assault an outpatient and brutally medicate them using 4-point restraints and IM injections. All you can do is bully and threaten. Involuntary Outpatient Commitment only serves to re- traumatize those with psychiatric disorders.  In my opinion it is just coercion and cruelty masquerading as treatment. But it won’t help anyone.  It will only drive the would-be consumer as far away from so-called  “treatment” as they can get. This is not how Connecticut should be delivering its mental health care.

Thank you for your time and attention to this matter.

Illness and death have dogged me…

I was in hospital for a month, the decent hospital but a bad time. The day I was discharged a good friend of mine died two thousand miles away and two days after I was discharged my beloved father died in the Connecticut Hospice after a brief unexpected illness. I am bereft and distraught, and don’t know what to do…Terrified that I cannot live or survive without the person who, for the last 7 years, seemed to me to keep me together. Not my twin (HAH!) not my other family members, but my father, who after 30 years of silence returned to me and spent 7 years trying and largely succeeding in “making up for lost time.” I will write more later but right now I have to get through the memorial service on March 24th (next Saturday).

Here is the official obituary which should come out today in various nation-wide papers.

My Father, Howard Spiro MD, who died March 11, 2012
Howard Spiro MD, professor emeritus at Yale Medical School, dead at 87 on March 11, 2012

 

Howard Marget Spiro, MD, 87, of New Haven and Madison died on March 11, 2012 at the Connecticut Hospice after a brief illness. Dr. Spiro was born in Boston, MA on March 23, 1924 to Thomas and Martha Spiro. He was raised in Newton, MA, attended Harvard College and Harvard Medical School and married his wife,  Marian, in 1951. He spent two years in the Army and subsequently moved to New Haven in 1954 where he was asked to establish and head the division of Gastroenterology at Yale Medical School. After writing a major textbook, Clinical Gastroenterology, Dr. Spiro became an internationally recognized clinician and travelled extensively, teaching other doctors not just the science but the art of clinical medicine.  In 1982, Dr. Spiro stepped down as Chief of Gastroenterology and took a sabbatical at Stanford’s Center for Advanced Studies in the Behavioral Sciences, a well-deserved respite which reminded him that physicians are above all human beings. After he returned to Yale in 1983 and founded Yale’s program on Humanities in Medicine, perhaps a natural move having majored in English in college, he wrote several books in which he attempted to bridge the divide between the humanities and clinical medicine. These books covered such diverse topics as the placebo effect, doctors’ experiences with their own illnesses, empathy in medicine and medical history. An active clinician and educator, Dr. Spiro continued to teach and see patients until he formally retired in 2009 at the age of 85.

Respected for his scholarship and admired for his optimism, Dr. Spiro was also known for his wit, maverick opinions and love of repartee. One notable if uncommon position he held was that knowledge of organic chemistry is unnecessary to enter medical school. He once claimed, “Neurobiologists are convinced they’ll find everything if they measure everything and chase down everything.  But will they find ambition, will they find greed?  How are we going to explain the seven deadly sins by the biology of the cell?” He will be missed not just by his family, his co-workers, his students and his patients, but by the international clinical community.

Dr. Spiro is survived by Marian, his wife of 61 years and his four children. He also leaves six grandchildren, a sister and two stepsisters and several nieces, nephews and cousins. [I took out their names for privacy’s sake]

A memorial service will be held at 11:00 on Saturday March 24, 2012 at the Unitarian Society of New Haven on 700 Hartford Turnpike, Hamden, CT.  A reception will be held at the same location following the ceremony. In lieu of flowers please make donations to the Howard Spiro Fund for Medicine and the Humanities at The Yale Medical School. This fund is dedicated to continuing Dr. Spiro’s dream of marrying the humanities and clinical medicine in order to improve patient care.

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I will write more as soon as I am able, but for now I cannot do much more than alert you to why I have been absent lo these long 4-5 weeks. I promise to get back to writing, but I suspect that may not be for another week or two.

 

Thanks for your patience. I really appreciate it.

Do I have PTSD and some Low-calorie PTSD Comfort Food

I think I will start with the recipes, since that might interest everyone. First, what is more the quintessential comfort food than mashed potatoes? So this comfort food main course starts with mashed potatoes, but it adds a cholesterol-lowering “superfood” curly kale, which is not only a deep cruciferous green, and therefore anti-all sorts of cancer and a first rate antioxidant, but it is extremely low-calorie, so you can eat virtually all you want. What we are going to make is a healthy version of the Irish dish, Colcannon, a dish that many cultures have some version of. It is not only easy enough to make from scratch, but we are going to cheat, as much as we can, to make it absolutely as easy as possible. I do however insist upon using fresh curly kale, since that is the only way you can obtain all the benefits of that vegetable. Here is the recipe, but don’t stop with that because following it is a recipe for a low-calorie, sugar-free, diabetic friendly cheesecake!

LOW-CALORIE COLCANNON (mashed potatoes and curly kale plus…)

2 bunches of curly kale, or about 6-8 leaves

1 box of prepared mashed potatoes, enough for 8 servings of 1/2 cup each, though for our purposes we will be allowing each person a whole cup!

7 walnuts per person (crushed into pebble-sized pieces)

Butter-flavored salt or butter buds, or sea salt or any herbs or seasoning you like (I like Badia brand All-purpose Seasoning, but the choice is yours.)

Procedure: Chop off the Kale stems and then chop the leaves into small bite-size pieces, approximately 1/2-1 inch square. You can also use a food processor and coarsely shred the leaves too, I imagine. STEAM these in a small amount of water until tender but still a deep bright green. Do not over-cook or you will lose all the “goodness.”

Prepare the mashed potatoes without the butter or milk, using ONLY water. (If you really insist, you can add a tablespoon or two of low fat dried milk to the water but remember that this will add calories…). Add your butter salt or seasonings to taste.

Now mix the kale and mashed potatoes together in microwave safe bowl or a saucepan and add crushed walnuts. If you need to reheat at this point, you can do so either in the microwave or in the same saucepan as you made the mashed potatoes on the stove.

Ta dah! The best part of this is that you can eat 2 whole cups and only consume 300 calories, which is PDG, in my humble opinion because most people are quite full after that.

Here’s the breakdown, in case you don’t believe me.

Plain mashed potatoes without milk or butter = 70 calories per half cup.

Kale= 30 calories approximately for 3.5 ounces…essentially negligible but we will call it 1/2 C.

Walnuts= 100 calories for 7 nuts

Seasonings= 0 calories

If you eat 2 cups of equal parts of kale and potatoes, you are only having 1 cup of potatoes, or 140 calories, plus maybe 1 cup of 60 calories of kale, plus 100 calories of walnuts. So that comes out to 300 calories total.

Now for the Low-Calorie Diabetic Friendly Cheesecake. This one is unbelievable delicious and simple to make. If you want to avoid ALL fat, simply make it without the crust, or experiment with making the crust without butter. I think it should work fine.

Ingredients:

1 large container of NO-fat Greek yogurt (120 calories/C.)

1 package low-calorie, no-sugar cheese-cake pudding mix

1/2 large bag shelled walnuts

2-3 Tbs butter or oil

Approximately 1-1 1/2C sucralose or Splenda-like sweetener

Procedure:

First if you are making the crust with butter, heat the butter in a small no-stick pan on moderate heat until it begins to sizzle. Add the walnuts. Toss them for about a minute but do not let them brown or burn. Add the Splenda and toss for about a minute or two. The Splenda will not melt so the mixture will remain crumbly. It will not get particularly hot. After a couple of minutes, remove mixture from heat and pour into a slightly greased shallow bowl or platter with a lip on it. (I use a large salad bowl.) Make sure the layer has no holes or tears and is relatively thick. It should resemble a largish pancake of crumbles. About 8-9″ circumference.

For the “cheesecake”: scoop Greek yogurt into a bowl and add the package of cheescake pudding mix. Stir vigorously until mixture is nice and thick and makes hearty peaks. With a rubber spatula, spoon over the crust, being careful not to tear apart and smooth it with care. Cover and refrigerate for around 8-12 hours. Enjoy!

Depending on size of slice, you can calculate calories from these:

1 C Greek yogurt= 120 calories (4 C. per large container, so likely 1/2-1/3 C per serving of cheesecake)

7 walnuts=100 calories

1Tb butter=100 calories (Since this recipe makes a whole cake, your slice shouldn’t have more than a pat or two or 30-60 calories)

Splenda=0 calories

1 serving of low-calorie cheesecake pudding mix=35-40 calories

(My estimate from this is: approximately 250-300 calories for 1/8 -1/6 slice of the cake…)

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I will write more soon about the post topic, i.e. the personal question, Do I have PTSD? But I have written for an hour and a half already, including what is copied below, so for now I am too tired to add much more. I will only say that my results of the test at the bottom, when I took it, definitely indicated that I have PTSD, despite the fact that I did not experience a trauma involving death or the possibility of death or serious injury (as the good doctors have now decided to redefine trauma.) Note that if you take the test at the site, they will evaluate it and give you a score, which you cannot get by taking it here, though you can get some idea of how you would do just by looking at it.

Finally, I don’t know if it is really okay to “lift these” directly from another website, but as I am providing a direct link as well as full attribution, I cannot imagine that the originators would object strenuously.

The first website is PsychCentral.com and here is the link to the PTSD symptoms and diagnosis article below: http://psychcentral.com/lib/2006/symptoms-and-diagnosis-of-ptsd/

Also as is noted below, the article was written by Harold Cohen, PhD

Cohen, H. (2006). Symptoms and Diagnosis of PTSD. Psych Central. Retrieved on January 29, 2012, from http://psychcentral.com/lib/2006/symptoms-and-diagnosis-of-ptsd/

Symptoms and Diagnosis of PTSD

By Harold Cohen, Ph.D.

There are three main kinds of symptoms that clinicians look for when diagnosing posttraumatic stress disorder (PTSD). These include re-experiencing symptoms, avoidant symptoms and symptoms of increased arousal.

Re-experiencing symptoms include ways in which the person persistently re-experiences the traumatic event. These symptoms may include the following:

  • Intrusive memories of the traumatic event
  • Recurrent, distressing dreams about the traumatic event
  • Acting or feeling as if the traumatic event is reoccurring
  • Mental and physical discomfort when reminded of the traumatic event (e.g., on the anniversary of the traumatic event)

Avoidant symptoms are ways in which the person tries to avoid anything associated with the traumatic event. These symptoms may also include a “numbing” effect, where the person’s general response to people and events is deadened. Avoidant symptoms include the following:

  • Avoiding thoughts or feelings, people or situations (anything that could stir up memories) associated with the traumatic event
  • Not being able to recall an important aspect of the traumatic event
  • Reduced interest or participation in significant activities
  • Feeling disconnected from others
  • Showing a limited range of emotion
  • Having a sense of a shortened future (e.g., not expecting to have a normal life span, marriage or career)

Symptoms of increased arousal may be similar to symptoms of anxiety or panic attacks. Increased arousal symptoms include the following:

  • Difficulty concentrating
  • Exaggerated watchfulness and wariness
  • Irritability or outbursts of anger
  • Difficulty falling or staying asleep
  • Being easily startled

Difficulty in Diagnosing PTSD

Identifying people with PTSD can be difficult and this disorder is often unrecognized. PTSD is unique among psychiatric disorders in that it is identified not only by symptoms, but also by the precursor of the illness (the traumatic event). Since talking about trauma may evoke painful emotions, people often refrain from discussing past traumatic events.

When a person is unable or unwilling to discuss a traumatic event, accurate diagnosis is difficult. For example, domestic violence and sexual abuse are subjects that many persons feel uncomfortable in raising, even with professionals. For others, feelings of shame and guilt related to the event and social pressures to “deal with” the symptoms that come afterward make talking about it difficult. Additionally, persons with PTSD often have other disorders, such as substance abuse or depression. These other disorders share some of the symptoms of PTSD and can also make diagnosis more difficult.

Doctors and health professionals may also ignore the signs and symptoms of PTSD. Indeed, it has been argued that at times society turns a blind eye to the existence of traumatized individuals, denying that posttraumatic responses constitute a disorder. Indeed, PTSD has only recently been recognized by the official psychiatric nomenclature. Persons who suspect that they are suffering from PTSD should seek out professionals who have experience with this disorder.

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Then the following is an online PTSD Test, which you can also find along with other psychological tests at the link below. Note that I have NO opinion regarding the online therapy offered except to say, beware of all such offers and check everything out first…

https://www.online-therapy.com/test1.php?mID=26&cPath=155_161&osCsid=04911a5dcc299094dfc7aad79ee57901

PTSD TEST

Question True False
Do you often experience flashbacks? (A flashback is a painful or intense memory; a vivid memory of a traumatic experience that returns repeatedly.)
Do you have nightmares or thoughts frequently in regard to frightening, horrible, or upsetting things?
Have you been exposed to a traumatic event involving a real or actual death threat, a threat to your physical integrity or that of others, or experienced a serious injury that resulted in responses involving intense fear, horror, or helplessness?
Do you often re-experience the traumatic event in one or more of the following patterns: intrusive/recurrent memories; acting/feeling as if the event is still occurring; nightmares; intense psychological or physical distress once exposed to cues (triggers) that associate with the traumatic event?
Are you constantly watchful, on guard, or easily startled (extremely vigilant)?
Do you feel detached from others, your surroundings or activities?
Do you frequently have sleepless nights, or insomnia?
Do you persistently avoid stimuli associated with a traumatic event, or experience general emotional numbness?
Do you experience extreme reactions to images or sounds that remind you of a traumatic event?
Do you have persistent symptoms that increase arousal responses that were not there before a traumatic event? Persistent symptoms may include sleep interruptions, irritability, outbursts of anger, excessive vigilance, exaggerated startle-response, or difficulty concentrating.
Have the symptoms lasted for more than one month and caused significant disruption in your life, including significant distress or impaired functioning?
Do you experience night sweats often? (Note: not everyone with PTSD experiences night-sweats.)
Do you often avoid the things that remind you of the past traumatic event?
Have you experienced memory loss, or amnesia because of seeing something that reminded you of the past event?
Do you often feel emotionally numb, emotionally responsiveness, or feel deadening emotions after being triggered back to the past event?
Are you easily startled by noise?
Do you feel depressed?
Do you show a lack of interest in activities you once enjoyed?

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.

 

Reflection on Room 101 in Ward D

Here is the sign I posted above the collage as it was finally presented today at Artspace:

 

 

 

REFLECTIONS ON ROOM 101* IN  WARD D

Collage, available as is or finished with bound edges

$1800.00/$2000.00

 

I started this collage at Natchaug Hospital in Willimantic, using scraps torn from magazines and glued onto a large sheet of brown paper. This was my effort to deal with the emotional trauma associated with other hospitals where I had been far too frequently shackled in four-point restraints. Although I have tried to depict a seclusion room realistically, I have also taken some artistic license: in a real such situation, the restraint bed would be facing the door, so that an aide or nurse monitoring the patient would be able to see his or her face clearly. And here, of course, the window is neither heavily grated nor closed. Instead, it has been opened (how? by whom?) and we see a winding path that leads far away…

*In George Orwell’s book 1984, Room 101 in the Ministry of Love is where recalcitrant prisoners are tortured, the instrument being whatever it is they are most afraid of.

mirror view into a seclusion room with a restraints bed.

You  really need to stand back from it to get the full effect, but this wasn’t possible, despite my wall being on a T intersection of hallways as someone had planted a bright torchiere lamp down the perpendicular hall. This was helpful for other displays but unfortunatley caught the light in such a way as to cause my collage to reflect it, leading to glare and poor visibility of necessary features. Ah well, live and learn, live and learn. Had I known this would happen, I would not have used a gloss finish on the mirror section, even though I wanted to in order to make it look “mirrory” compared to the non-mirrored “flat” or matte parts…

I have a few other things to say about my experience at the OpenStudio show and sale today — I was quite uncomfortable despite appearances. Or at least I think I presented a comfortable and at ease appearance. But in point of fact there were three or four women in my hallway who were talking about me and who did not want me there. I think the woman who was almost directly across from me, except for the space where the T opened up to the other perpendicular hall, was particularly upset with me and trying to marshall support from others against me. I don’t know what I did to bother her, but she clearly had conceived an antipathy to me. She was the one I believe who won the award at the group show. I thought her paintings, decent, glowing and colorful, and skilled to a nice degree, though not all that creative to my eye. Highly colored oil paintings, likeable but somehow a bit lifeless I cannot quite say why because everyone else seemed very impressed.

Be that as it may, I do not trust her and frankly I believe she is likely bad-mouthing me as I write this. I had the distinct impression that she was enlisting support from those others to get rid of me at the exhibit, and even harm me in some fashion. Every time I left for one reason or another, or walked down that hall to get to the stairs, I felt watched and heard them whispering. Damn her and damn them. I could have had a reasonably okay time, had they not taken to tormenting me…though in point of fact, had not a few visitors talked to me a bit, I would have sat in silence all day long, except for when my family came. No other neighboring artist spoke to me all the day and no one even so much as introduced themselves. If anyone did anything — conversed with me, introduced themselves, started a conversation, it was I who had to do it, and then it seemed as if they responded only reluctantly.

However, I should cease and desist at this for now as I left out my “business” cards, and so I guess any artist there could have, though I doubt it, picked one up and could now be “listening in.”

In any event, I am doing a little drawing at the moment, small cards, “trading card-size” drawings. Dunno if I will give those away, trade them, or not. But it is fun to work on such a small scale nonetheless.

The only thing I would give away free this time for sure, though I have given and donated a lot previously, is Christabel, the portrait collage. If the real Christabel came along and introduced herself (with proof that she is who she is, because my amnesia for that hospital stay is such that despite my remembering her kindness I do not actually remember her face or anything else about her) if she came to see the show and saw her portrait finished, I would happily give her the collage wall-hanging for free. So Christabel, that is my offer. (I won’t know you, but if you remember me and come to the show, find me and find your portrait.)

Enough for now. Just wanted to let my readers see the final “product” in case it sells. Fat chance of that though. It looks as if I will be going home with literally everything I brung with me…Well, it is a learning experience. And it has been that to the max.

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

_______________________________________________________

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

Trauma and Acceptance

 

Snowdrops accept the snow, grow through it, are first to see the spring

These past several weeks have been pure hell for me. In fact, despite some of my “up” posts, these past 18 months have been hell. I have found it nearly impossible to move beyond my experience and the trauma and degradation, the deliberateness with which they were visited upon me by people who should have not only known better but should have…

Wait, I have determined not to go there, not to revisit that dark place in my mind any longer, or not for now, after I can handle it better than I can at the moment. It serves no purpose, one, and two, it only feeds the fever of despair and revenge-seeking, an emotion that can eat you alive if you let it.

It was the notion, the actual feeling of wanting revenge and Dr Angela’s dismay when I said so this morning that brought me up hard against my own deficit of forgiveness, my own inability to accept that which I cannot change. I suddenly understood not only the horrendous feeling that parents must have when a child is murdered, how they must want to see the murderer killed, and how they must want the death penalty for the killer…I felt that much anger for my torturers. And at the very same time, I suddenly saw how useless it was, that nothing could be done, that in fact they would and had “gotten away with it” but that my only recourse was not revenge but to accept it and move on, because not to was to get mired in fury and bitterness and the morass of despair that was weighing on me and driving me nearly to madness every day. I had to stop, I had to stop and find a different way to deal with it, or I would die. Simple as that.

So I considered that family of the murdered child, and I understood that if that killer were executed to serve their revenge fantasies, would it actually bring closure and peace to them? Time after time, that has been promised, and time after time, people have not found peace in the killing of another human being because it never works. Violence to revenge violence cannot relieve the trauma of loss, or make anyone feel less awful. It would be far better for that family, and for me, too, to learn better ways to cope, to breathe through the despair I suppose, or even to work so that others do not go through what they or I have experienced, as long as doing would not reignite the trauma for us.

I am not sure I am ready to do that sort of thing just yet. I do not want to get angry on behalf of anyone else at the moment, for fear that I will only get angry, and anger by itself for its own sake will not help me. But already I speak out about these things, say what happened to me but in my speeches I try to end with words that segue into messages that bring hope to my audience. I could never speak about those traumas without something that would bring it full circle to recovery from trauma or I would leave them in despair and myself as well. As in a poem, you start with darkness but leave with at least the assumption that light is on or just below the horizon, headed in the right direction.

So there I was in Dr Angela’s office, and even though I was sobbing about this trauma that I could not surmount, that was eating me alive, the picture of that angry but grieving family appeared in my mind’s eye, and I realized that I had to find a way to help them, to heal them…and how would I do that? I would, I would, I would…First I would help them stop ruminating about the killing, since rumination is itself a way of making the injury or trauma worse, like continually picking at a scab. I would have them open up to the world and see what is around them, see what remains alive, what has not died. For me, I would look and see what in myself was not violated, what I can do in spite of what they did to me, understand that I still write and draw and paint, that in fact they did not take those things from me.

They hurt me, but they did not kill me. They only degraded my feelings, they only humiliated my feelings, they only frightened me. They made me feel as if they might hurt me when they attacked me and pushed me to the floor. I felt scared but they did not do anything that permanently injured my body or caused irremediable damage to my brain. I am still alive and in fact can still do what I used to do. I only feel hurt, feel traumatized. Feelings are feelings, and while they are not nothing, you can change your feelings. I might not be able to change an injury that led to an amputation or brain damage and I certainly could not if they had killed me.

I need to think about this differently in order to change how I feel. I need to think about what I can do, both constructively and creatively. What I can do about it and what I can do instead of thinking about it day and night. Well, tonight what I can do is prepare my speech for the Farmington Library tomorrow, and pick out the poems I am going to read. And tomorrow I will be cleaning my apartment and then meeting my ride and going to the library early. I won’t have time to brood or ruminate. I will bring my sketchpad and pencils, so I will have something to do while I wait.

One thing I won’t do is leave myself time to think, no, that will not be an option I am going to allow myself. If the Commissioner of Mental Health contacts me after reading the letter and documents I sent her, so be it, I will leave the issue in her hands. But otherwise, the case is closed, at least for now. I have a life to live, and I need to get on with it. If one of those people who deliberately hurt me, just one of them, went home that night with a bad conscience, ashamed of herself, ashamed of herself as a nurse, I am glad. But it may not have happened and in any event I will never know. But i will not brood over it, and I am not going to think about any of it tonight.

One day at a time, just take it one day at a time.

Recovery – What is it?

I recently wrote a post on my About Schizophrenia blog that addresses this question.

 

“Recovery, recovery, recovery, what a whale of a word. And by whale I mean a big whale, a white whale, a veritable Moby Dick of an obsession, only it is one that it seems no one is able to define in any quantifiable way. Not at least so that makes sense to me. “Recovery is a process.” You have heard that one, no doubt. I have used it in talks any number of times myself. Well and good, but so is digestion and so is having a heart attack, and in the first case you let it go on about its business in the background, whereas in the second, you definitely want to interrupt the process as soon as possible. So, okay, recovery is a process, as I blithely voice to my audiences, but what do I in fact mean by that?…”

 

You can read the entire post here:

http://aboutschizophrenia.blogspot.com/2011/05/recovery-recovery-recovery.html

A Death of a Friend from ALS

Joe C

My longtime dear friend, Joe Cornelio, died at the end of April, after living with, and I mean, living with, ALS (Lou Gehrig’s disease) for five years. Although he spent the last four of those years in a chronic care hospital on a ventilator and virtually helpless, he never once gave up on life or stopped loving it. He was a miracle of a man and even at the end I believe he would have continued to fight to live, even if all he could do was move one eyeball to say yes or no. It is entirely possible that he would have wanted to live even without that ability, but we will never know.

It is difficult for me to write about the day he died, or about how it came to pass that he was removed from his ventilator, but if you will bear with me, it may do some good (for me at any rate) to put the pieces together and get it onto paper.

I believe that Joe was misdiagnosed for many many years with schizophrenia, when in fact he had had Asperger’s from childhood. Now, that’s a long story in itself and though I could make a case for it, I cannot prove it. But I am not the only one who knew him well to notice that he never once exhibited signs of psychosis or even real delusions or true paranoia. Furthermore, from what I gather, the only reason the diagnosis came about or  “took” was because he was put on Trilafon by a well-known psychiatric incompetent who was later “defrocked” and when Joe looked the drug up in the PDR and read what it was used for, he concluded that that meant he must have schizophrenia. From then on, so his story was, he told subsequent doctors this diagnosis, and apparently they simply took it on faith. In fact, for all the years thereafter until his terminal illness of ALS, the one doctor he saw not only never questioned this, but also never even reconsidered his absurd concomitant Dx as bipolar, even though Joe clearly had one of the most placid temperament possible and certainly wasn’t the slightest bit moody. No one so far as I know ever even considered that there might be something else going on. Even when I once went with him to see his non-medical therapist, did she really seem even to want to think about the possibility, as if it might be too much trouble…Perhaps, though I cannot recall, it was too late, if in fact this was after Joe’s ALS diagnosis.

But as I said, that is a long story, and not being a doctor, I suppose I can’t make the diagnosis, except that as his closest friend, I do and I feel that a great injustice was done. Not only was he saddled with a serious psychiatric diagnosis, and a stigmatizing one at that, but that particular neuroleptic medication rendered him much too tired to work as an engineer. All his adult life that was what he really wanted to do. Work. But the drug sapped his stamina…Worst of all, although eventually on Zyprexa which helped what might have been poor social skills due to Asperger’s, after he had been on it for years it caused the diabetes that ultimately cost him his life.

Speaking of engineering, all the years I knew him, Joe thought, breathed and ate engineering in one fashion or another. It is not that he was an automaton or a bore so much as that he applied engineering thinking to every problem that came up in life, even to our quarrels. Or better to put it, to my various emotional upsets. Whenever I got in some sort of “state” his approach was always to remain calm and to break things down into little pieces and to try figure out, or to help me figure out what was wrong and (just like a man) how to fix things. The beauty of this approach was that it so often worked! He never fed the fires, and he never took things personally, which was pure magic. Sure, he could be irritating for the same reasons, since when he was the source of my irritation, he rarely responded and he never listened to anything I had to say, unless someone in authority said the same thing, and then they got the credit. This hurt my feeligns time and time again, for I felt that he never took me seriously, and discounted everything I said as being worthless for my lack of degreed expertise. However, I came to accept that and by the end it was just a joke between us. I would find him a real expert to tell him what I already knew, just so he would believe it.

Anyhow, for all his faults, and even the dead are not blameless, he managed his last illness with amazing gracefulness and not a word of complaint. The day before he was hospitalized with the pneumonia that put him permanently on a ventilator, he saw a new doctor, who actually gave him a clean bill of health, so to speak, and said his lungs were clear! Joe came away from that hour and a half appointment not saying a word, even though he could not breathe well, and had been to see him because of it. The doctor must be right, no? After all, he was a doctor. (So much for medical degrees and expertise…) It was only later that evening when he went into a breathing crisis that Karen drove him to the ER where they found him suffering from aspiration pnsumonia, a common result of ALS when the throat muscles are too weak to prevent saliva and food and liquid from entering the lungs. He was immediately taken to the ICU and spent  3 months there, first with the aspiration pneumonia that almost killed him, and then, just as he was being weaned off the ventilator, with 2 more cases of hospital acquired bacterial pneumonia, which made it impossible.

After that, it was four years in the Hospital for Special Care in New Britain, where the care was indeed special. They were wonderful to him there, and I believe he would never have survived as long as he did without them. But in the end, Zyprexa had caused diabetes, which he did not even know he had until the ICU tested his blood sugar, and it was uncontrollable even during the years at the HFSC. During the final year the tissue around his  tracheostomy started breaking down and would not heal, which is not unusual in diabetic skin wounds. Eventually the hole that held the tube grew so large that the air began leaking so much that he was not getting enough oxygen without the pressure beign increased dangerously, and during his last week, his lungs began to bleed, probably as a result. He went in and out of consciousness, according to whether or not he had had a transfusion.

Amazingly enough, though, one of the last times I saw him completely alert, conscious and able to communicate, he told me by moving his eyes and indicating letters on a letter board ( he had lost the ability to control his computer, which for years had spoken what he spelled with the gaze of his eyes) that he was “still chugging along.” When I asked him if his life was still worth it, and if he was still happy with it, he answered without hesitating, YES.

He knew he was dying, but he begged me to make sure no one killed him,  that no one just pulled the plug on him or let him die through neglect. I promised him that, and asked his cousin, who was in charge of funds to hire an aide, just for someone to sit with him during hours when the hospital might be short staffed. This man, Ben, turned out to be an angel in disguise, apparently, though I met him only on the final day.

Why the final day even came as it did I will never know, I suppose. I still do not understand the rush, when the very day before from all reports Joe had been quite conscious alert and seemingly content. All I know is that I got a call the next morning that he was going to be taken off the ventilator that afternoon. I asked first if he was unconscious, and was told, um, yes…but it didn’t sound convincing. Then I asked if this was his wish. The response was that it had been pre-arranged back when he had first become ill.

I wanted to say more, but I was up against two strong men, his cousin and the doctor. And under the pressure of the moment, I forgot that I had any rights in the matter, if I did still. I forgot that at least in Joe’s living will I had been designated at one of the medical representatives, and that the cousin was supposed to consult with me before making any end of life decisions for Joe, and then only if Joe were in a persistent vegetative state or completely and permanently unable to communicate. But so far as I could tell, neither of those conditions were true, had not been true up until now and could not be shown to be true within the space of one day. Yet the announcement was so sudden and so abrupt and definite, that I had no chance to say, Wait a minute, what is the rush?! I simply stammered that I would be there asap. I now wish to god I had stood up for Joe. I know he was conscious when I got there, I know that he could have communicated with me and probably have indicated whether or not he wanted this done. But I didn’t dare ask him, or even bring it up, lest they kill him anyway and my letting him know in advance only increase his terror…Would they have done it expressly against his will? I had no idea! I was terrified that indeed they would have. I didn’t know what to do… I had brought in music for Joe to listen to, because I thought that he was unconscious, but he didn’t seem so to me and though he couldn’t respond, he did seem to see me. And even his cousin talked to him with the same apparent understanding.

But it was all grotesque, because I knew what we all did, and were dancing around not saying, which was that Joe was going to die within the next ten minutes. NO one even said a word. (I admit that I did, privately, indicate to Joe when all were out of the room, that I would be there all of the afternoon, for as long as he needed me, but I didn’t tell him exactly why. Well yes, I did say that the plans he had agreed to at the start of his illness– I cannot recall what I in fact said, but I let him know as gently as I could what was going on. Was I cruel, unintentionally? Well, get this: The doctor who was going to pull the plug came in and in front of Joe, as if he could not hear him, told us all what was going to happen, how he would make Joe unconscious with morphine and then turn off the ventilator, and related  each stage that Joe would go through as he died…He told us this blow by blow right in front of Joe, right as I am sitting there at Joe’s side. But when I asked him to speak directly to Joe, he said, “No, not in Joe’s frame of mind, that wouldn’t be helpful.”

HUH????? What was that supposed to mean?

I will probably be asking that for a long time. Why did he not act like the compassionate physician he was supposed to be? Where was any shred of compassion? For god’s sake, if he was “helping Joe not suffer” where the hell was his empathy for his mental suffering? Did he think that just killing him was not going to cause suffering? I mean, what the hell?

Well, I cannot go further with the details, except to say that I left after Joe was essentially no longer Joe, once he was in a coma. All through his illness, Joe had never seemed any different to me, had never looked or become anyone any different from my old friend. But  at the moment I looked up from his hand as I stroked it, I realized that he was gone (though technically alive) and that Joe was not there. I bolted then and there, realizing that I wanted not to see anything more.

Joe is gone now, and I had a really hard time for several weeks. The funeral was held very quickly an hour away in his home town, so few of his friends who had stuck by him could go, if any. However, a few weeks later, we had a memorial service for him in the hospital, a service I personally found somewhat hurtful, but that is another long story. In any event, I wrote two poems for him, which I read for it. Only one can I print here, as I hope to publish the other before I put it in my third book.

DESIDERATA

for Joe Cornelio

When you die,

let there be lightness in your limbs, so they can rise

to lift you from your bed.

May there be clarity in your speech

so your tongue can once more speak the names

of those you love. Let those syllables wash

your tired face. Take up your hands, reach for mine.

You can wipe your eyes now.

Let your smile widen and shine as it can.

When the perigee moon rises above the water

let it pour gold through the trees,

let the fish leap in the blue ripples of evening

and the frogs that are left sleep in the cool mud.

Wherever you are, may you remember

both the friends who stayed and the friends

who scared, for all of us loved you,

blankets to your chin, and let that warm you.

And should the light fail at the end of the tunnel,

remember: only when it’s dark

can you see the stars.

Portrait in Pencil: Two Teenaged Girls

Actually, these lovely young women are my nieces, my brothers’ daughters, and I scarcely do them justice here. But  rather than their appearances singly,  it is the wonderful and loving relationship that I aimed to show more than anything else. Their mutual devotion is so very clear, the younger Adriane on the right and her older sister Claire on the left. I think the photo that this drawing was taken from is surely one of the most delightful I have seen, at least in terms of any recent photo of my extended family.

I am aware of the misalignment of the eyes and of other faults large and small, but to me it is the expression of love and affection between the girls that is much more important than these imperfections (plus, frankly, I have to admit I ruined the original portrait entirely trying to “fix” it, trying to “perfect” the placement of those eyes..I ought to have known better.)

 

My brothers' daughters, Claire and Adriane

Medical Research – Is it Mostly Bogus?

This is the conclusion of a recent article from The Atlantic Magazine article:

“Science is a noble endeavor, but it’s also a low-yield endeavor,” he says. “I’m not sure that more than a very small percentage of medical research is ever likely to lead to major improvements in clinical outcomes and quality of life. We should be very comfortable with that fact.”

http://www.theatlantic.com/magazine/print/2010/11/lies-damned-lies-and-medical-science/8269

Have we been sold a bill of goods about the usefulness of psychotropic medications? Are we really taking more or less placebo drugs, or  medications that have not truly been proven effective except anecdotally? I feel for example, that Zyprexa helps me — to read and feel enthusiastic about life etc, but who is to say that I would not feel the same off all antipsychotic drugs, after a slow weaning period? I do not mean to suggest that everyone should stop taking their meds, I only wonder, after reading this article and others  if we really know much about the research that has gone into “proving” the efficacy of what we are being told to take for “our own good.”

Here is my own comment on the article above, which you will see at the bottom, if you read that far:  “Haven’t read all comments but if it has not been already stated, chaos theory is relevant here: sensitive dependence on initial conditions means that especially with regard to weather, it is impossible to predict the behavior of large systems even a day in advance, as we in New England know all too well. In terms of medical research, this holds as well, and indeed, it is all too often the case that what a researcher predicts is precisely what she or he “discovers”. Real scientific research should aim to falsify the hypothesis, rather than “prove” it true. Science can never prove anything absolutely true, it can only evaluate the relative usefulness of a hypothesis by the fact that so far no one has shown or proven it to be wrong.”

It is the last part that is particularly relevant: no one tries to prove their research hypotheses WRONG any longer. They only want to prove them correct. But that is easy. You simply manipulate a little data,  or eliminate those irritating bits of information that aren’t as pretty as the those that look really good when published in respectable journals or when advertised in glossy two page ads to the public. But truly scientific studies ought to try to show that a hypothesis, say that Zyprexa is an effective treatment for schizophrenia (a “squishy” diagnosis in itself) is  in fact not true, and ought to do this many times in many different ways. If  many studies fail to show that Zyprexa is not  ineffective in treating schizophrenia, then doctors might be justified in using it as a treatment, for the time being, until, at any rate, it is shown – if indeed it ever is — to be ineffective, or less effective than some other treatment. That is the correct use and usefulness of the scientific method. But research rarely proceeds that way any longer. All researchers care about these days is getting “proof” something is “true” that is, that something “works” which they do in all too many cases by massaging the facts and data.

If anyone is interested in discussing this article, please add your comments to this blog’s comment section and I will post them below, with my own responses. I would very much like to hear from you, esp with regard to anything you have to say about psychotropic drugs and your own experiences and knowledge of relevant research.

Caffeine and Psychosis

I just received this notice in my in-box and wanted to pass it along. Although the article comes from Australia (despite its mention of a Maori man, typically of New Zealand)  and it does not appear that “Demon Shot”  is available here, many other energy drinks are. And most of them are based on caffeine, the content of which in such drinks generally ranges from the amount in a cup of strong coffee to nearly 3X as much. If three cans are consumed in a short time, that means one has ingested about 900mg of caffeine.

Energy drink ‘triggers psychosis’

Danny Rose, AAP Medical Writer | 22nd February 2011

CAFFEINATED energy drinks may trigger a psychotic episode in people with mental illness, an expert has warned after documenting the case of a young man with schizophrenia.

The 27-year-old Maori man had two separate psychotic events a week apart linked to his intake of the drink Demon Shot.

Professor David Menkes said these events occurred at a time when the man, who was prone to persecutory thought and hallucinations, was otherwise responding well to anti-psychotic medication.

In the first instance, the man drank two 60ml bottles of Demon Shot and later reported experiencing recurrent thoughts, over several hours, of “people wanting to harm him”.

“One week later, he drank three Demon Shots over 15 minutes,” said Prof Menkes, who is Associate Professor of Psychiatry at Auckland University.

“He was observed to be emotionally labile (moving from one point to another) – initially laughing and talkative, later becoming restless, withdrawn and argumentative.”

Other symptoms included a rapid pulse and insomnia, which took 24 hours to subside.

The man described again having had paranoid thoughts over several hours and an experience “consistent with a psychotic episode”.

“The fact that our patient had the same reaction on two distinct occasions is important,” Prof Menkes said.

He said there was known cases where a high intake of caffeine may exacerbate a psychotic condition though this appeared to be the first linked to consuming energy drinks.

The man’s case was “evidence that some patients with treated schizophrenia may be vulnerable to exacerbation of their illness by caffeine-containing energy drinks”, he said.

Demon Shot drinks are widely available in Australia and New Zealand and they contain 200mg caffeine plus taurine, B vitamins and guarana, which may have other stimulant properties.

According to its website, each Demon Shot provides a “massive energy hit that delivers up to six hours of concentrated mental and physical responsiveness”.

The drinks also carry a warning, which says it should not be consumed by people sensitive to caffeine, and no more than two drinks a day.

On Psychiatry and Authority

My writers group gets together once a month, when we discuss the single page of prose nonfiction or fiction, or usually in my case a poem, that we have written to the one or two word “prompt” chosen the month before. While I had to miss this month’s meeting, due to exhaustion, I did write (or rewrite) an essay as well as a poem. The poem I cannot share, for reasons I have reiterated many times: if I publish it here, I won’t be able to do so in any hard-copy journal. However, I feel comfortable putting the essay here, since it is mostly a rewritten and reworked piece of an earlier blog post…So if it seems very familiar, it is. I wrote it in fact not so long ago, but I have polished it and turned it into a piece of writing with a beginning a middle and an end, with a few other details I have discovered from sources like my journal since then.

PS I apologize if I repeat myself on this topic once again, but you can see by the repetition itself how much trauma incidents like this one, but also most of the others, which were much worse for being truly violent, inflict upon people…

========================================

S & R

Maybe I was disruptive. Perhaps I frightened other patients. I do not know why otherwise they would have forced me into that barrenness known as the “Quiet Room.” That it was just the same old seclusion room, prettified with another name did not escape me. I begged for a blanket, but no deal. Freezing, I pulled the thin mattress over me instead. They yanked it off in the typical psychiatric nano-second then eliminated it from the room altogether. Now I had only two hospital johnnies and my rage to keep me warm.

I remember that I yelled a lot, and that I wouldn’t stretch out on the cold linoleum to “calm myself.”  I begged the one-to-one nurse to talk to me. She only turned away and told me to lie down on the floor. I complained again that I was cold. She said nothing, only barred the doorway. Getting no response and still agitated, I tried to push my way out. Two “guards,” who though deliberately keeping just out of sight, were on alert, and they shoved me away from her. I yelled again and shoved back. One of them asked what was wrong with me, why didn’t I just ask to talk with the nurse instead of physically resisting? I did ask to talk, I told him, but she refused to, they all did. He wrinkled his brow as if confused by this answer, but with a shrug that said it wasn’t his job either, he ordered me to stay inside the seclusion room and to “just lie down and stop making trouble, if you want to get out of here.”

About what happened next, I remember little. I only know that suddenly I found myself face down on the floor and with a commotion of people around me. Some man had pinned my arms behind my back and he was angrily mashing the left side of my face into the floor.

When they let me up, I yelled that I was not in prison and they had no right to treat me that way. But at least, I discovered, I was finally allowed to talk to the nurse and to stand out in the hall with her. That was progress, I thought. Then I heard staff in low and serious discussion some distance away. Someone sprinted down the hall in the opposite direction. I had a bad feeling about it and asked my one-to-one nurse, “What’s going on, what are they doing?” She responded, “They’re making up a bed for you.” “A bed? What sort of bed?” That’s when I understood that she meant a restraint bed.  “Wait a minute. You can’t restrain me! I am out here, calmly talking to you. You haven’t even offered me a PRN and I am willing to take one. But I am not a danger to myself or others, and you cannot legally put me in restraints.” The nurse remained silent. She refused to look at me. My heart began to race. I shouted down the hall, “I will not let you use restraints on me. I am calm and you are not allowed to do this.”

When finally staff members approached and asked me to follow them, I complied. I knew that if I didn’t they would have reason to say I “deserved” whatever they did. In my room, I found there attached to the bedframe were the straps and shackles of four-point restraints.

“Listen, I am calm and I am not a danger to myself or others,” I carefully declared. “I will take PRN medication. I do not need restraints.”

“Lie down on the bed, Pamela,” one nurse told me. Again, I refused, saying that this was punishment pure and simple. They had neither cause to do this nor any legal right.  She responded, “We will ask you one more time to lie down on the bed, Pam, or the security team will assist you.”

At this point, I understood that they were going to use restraints as a form of discipline and would do so no matter what I said. It was completely illegal but they were out to get revenge and they would use any reason I gave them to excuse such measures. If I “made” them force me into the restraints, it would only prove that I deserved them. More humiliated than I have ever been in my life, I sat on the bed.

Ignoring my protests, they went ahead and shackled me to the bed, my arms below the mattress and my legs to each lower corner  and then without a word, they left. Except for an aide monitoring me through the door, partially ajar, I was utterly alone: humiliated, degraded, helpless. I couldn’t help it. Against my every determination to stay strong, resolute, and angry, I let out a lung-bursting howl. I didn’t care who heard me, who I frightened, who I disturbed. I howled for myself and against all the injustices and cruelties that had ever been perpetrated against me. And I howled for every other so-called mental patient that had ever been shackled to a bed by medical professionals who claimed to be helping them. Who thought they could justify brutality by calling it therapeutic.

Pencil Portrait – Our Prez

This is the first time I have tried to do a truly realistic pencil portrait, and I guess for the first attempt it is okay, but I can see only the flaws in it! I have been informed that this image may have been taken from a copyrighted photo, so I may have to take it down. But for now, I assume that I have few enough readers that no one will object to my exhibiting such an amateurish attempt, and one done purely for my own pleasure as well self-training!

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