Tag Archives: Writing

Health, Health Care Reform, Medication, Mental Health, Politics, Schizophrenia, Uncategorized

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

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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.

Acceptance, Forgiveness, Hospital, Mental Illness

Poem about My Father and Me

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TYRANNOSAURUS REX

by Pamela Spiro Wagner

Tyrant, they called you, emperor, bully,

the first time I was in the psychiatric wing.

You finger-painted, yes, getting down on your knees

to smear pigment with stiff abandon

but afterward, in the hall, when I froze, contorting,

you let the whole world of the ward know

your scorn, imitating me, calling me “crazy.”

I seemed finally better. I came home.

But when I failed you, leaving med school,

an embarrassment and a humiliation

who couldn’t even keep work as a clerk or waitress,

you claimed suddenly “three children” not four.

Between us interposed silence for thirty years

as I learned to live on $3 a day, to write my life

into poems when I had words to share.

Years passed in “the bin” and out “on the farm,”

as I called the hospital and those programs by day

that structured my life. But hospitals shape-shift

after a dozen or more and there are decades

of my life that are lost even to memory,

each melding into another like shadows

on night-lit walls in carbon paper alleys.

One keyhole through which I see the past:

Shock treatment with its drowning anesthetic drops

and stunned awakenings. Then there you are,

standing in the seclusion room door

resuming conversation as if begun just yesterday

not thirty years before, no older, or at least

no grayer than “Daddy” again, shorter, yes,

but kinder. What could I do but respond?

I never dreamed that at eighty-three

you’d lose your fire, habanero, old Nero,

or that I, Rome, would ever stop burning.

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The above poem tells a long story in a few words, though necessarily only part of it. I have to leave it there for now, as I lack the energy to flesh the story out further. But in later days, after the memorial service and as the spirit moves me, I will try to write more. Thanks for your patience. As a good friend said, It — grief, tears, feeling alone or lost– comes in waves, but when it hits, it hits hard…

Mental Health, Schizophrenia, Trauma, Violence

In-Patient Psychiatric Abuse Can Be Subtle (and not so)

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I will be rewriting this for my new memoir, but wanted to try out the episode here, in part, though I have not yet rewritten it…I have been rereading my many journals that I have retrieved from storage in preparation for really seriously writing this thing, and it was one of the first events recorded that I happened to dip into. It is in a relatively recent journal, but I was reading randomly and I just happened upon it. It very much upset me, as just as I read it, I remembered it very clearly. I had no amnesia, it was only that I have been in so many hospitals in the past 3 decades that I cannot separate out one from another, nor tell what happened where or when.

Subtle abuse? In fact, I don’t know that the episode I relate here is an example of subtle anything. I can only say that at the time I had no idea that it was abusive. I felt that perhaps I deserved it.  I had no idea that it should have been reported, that someone should have defended me, that anyone…Well, you will get the drift upon reading the following brief description of one incident, among the way-too-many that have happened to me over the past 5-10 years in Connecticut hospitals. All I can be sure of is that if hospital staff do these things to me, I am fairly certain that they must do them to others…In which case, that Hartford Courant article in 1998, “Deadly Restraints” which was supposed to have changed everything both in Connecticut and around the country in terms of in-patient treatment of the mentally ill, that article did little to nothing. I would say, in fact, that treatment has gotten markedly worse over the decade. Compared to my treatment in the two decades before this past one, I was never abused as much in the 80s and 90s as I have been since Y2K and 2000.

For once, what I write of here does not involve restraints per se, at least not immediately, but as you will see it involves abuse, physical abuse, just the same. I have transcribed this from my journal from a few years ago. I have edited it, but most of the edits I made were for clarity or to convert partial sentences to full ones, though in a couple of places I had to flesh things out more. But here ’tis, what happened to me at a general hospital I spent a fair amount of time in, in Fairfield County, where my twin lives:

“After a run-in with Karen again, I apologized and we had a decent talk. I took off my coat for once, went to Wendy’s communication group and did okay. Then I was sitting in the alcove talking with Mark about my dread at every anniversary of JFK’s assassination when a hullabaloo started near room 306 at the other end of the hall. It seems a woman was having a heart attack. I immediately felt the floor fall beneath me: I was to blame, my inattentiveness, my raucous, hyena laughter, my evil had killed her!

I knew that I needed to take my 4 o’clock medication for what little it would do, but no one called to announce them or for me to take them. My ears rang, booming! The air was full of blaming and criticizing voices, so maybe I didn’t hear, but I think they just didn’t call me. I rang the intercom buzzer at 6:45 and was told that Jamie, the medication nurse that night, would be back from supper around 7 o’clock. I rang back at 7:05 but he was still gone, so I waited another 15 minutes since no one told me that he had returned.Finally at 7:20 I pushed the intercom button to ask if I was supposed to skip all my 4 o’clock and 6 o’clock medications. They now said Jamie was waiting for me. But why hadn’t he called to let me know he’d gotten back from dinner? Slowly I managed to shuffle up to the medication door again, zipped to the mouth in my coat and balaclava hood, verging on stuckness, only to find there was no Geodon in my cup.

“So I don’t get my 4 PM medications,” I whispered in stunned panic, too afraid to simply ask for it.

“Nope” was Jamie’s only answer.

I was flabbergasted, completely stunned. My second prescribed dose of BID Geodon was what I’d been waiting patiently for ever since the patient in room 306 had her heart attack. After Jamie ignored me, giving me no explanation, I just turned, took my 6pm Ritalin, then dropped the DIxie cup of water and all the other pills on the carpet. In a daze, it took everything in me to start making my way down the hall towards my room again.

Then I heard footsteps pounding up behind me and suddenly Jamie was in front of me, blocking my way. “You’ll go back there and clean up the mess you made right this instant!” he bellowed and pushed me towards the med station. I stared through him, tried to walk away, but he blocked me again and again pushed me backwards until finally I gave in, relaxed and let myself succumb to his pushing. I didn’t walk though, I merely fell backwards to the floor, saved from injury only because he grabbed the front of my coat as I fell, and lowered me to the floor. I curled up in a ball like a porcupine, hoping not to be killed. Well, he was in a rage and forced my hands down, away from my shoulders, and unzipped my coat. Then he ordered me to get up and clean up the mess again — what mess really? A few pills on the floor, and a little water that would dry? I refused. I curled up on my side and closed my eyes, responding to nothing. He threatened me with restraints. At that, I gave up resisting, knowing resistance would give him the excuse he wanted. I let him pull my coat off my limp body. And I remained limp as he carried me to my bedroom where he dumped me coatless on the bed and thundered away. I was triumphant, however. No restraints! I’d figured it out. If you refuse to resist, if you don’t fight back against their power plays, they have no excuse to justify putting you in restraints. They cannot put someone who is completely silent and limp into 4-point restraints. What would be the point?

Nevertheless,  I was cold and felt exposed in only my T-shirt and jeans, and with no coat to protect me, nor others from me. So I got up and grabbed a sweater and started bundling myself into hat and  hooded scarf. Suddenly Jamie barged in again. I backed away and fell onto the bed behind me. In a fury that was unbelievable to me, he leapt onto the bed and pinned me down, knelt so his knees trapped me and I couldn’t move. Then he unbuttoned my sweater and tore it off me, ripped off my hat and scarf, then without a word proceeded to empty the room of any clothing that could possibly cover me, including my shoes.

This was too much to bear. But I said and did nothing in protest. How could I? I had no words, no sense that I had rights of any sort. All I did was huddle against the wall under a blanket and whimper, “I didn’t mean to kill her. I didn’t mean to cause a problem.” Jamie, who had left with all my things, stormed back in and angrily lectured me on how I was guilty of  “just wanting attention!” I wept silently. All I’d wanted that entire afternoon had been my 4:00 pm medication, and to be left alone to deal with repercussions of having killed the  patient in 306. I was too stunned to respond and could only whimper over and over, “didn’t mean to kill her, didn’t mean to cause a problem.” Still furious, but getting nothing from me and spent, Jamie finally left for good.  After a while, I looked around at the nearly empty room, and there on the night table was the pen Lynnie had left behind that afternoon. Jamie had overlooked it in his rampage. I had no energy to get off the floor, and no paper to write on, so I did the only thing I could, and  I began writing on the wall. “I didn’t mean to kill her, didn’t mean to cause a problem,”  I wrote and wrote. I wrote until I physically could not write any longer, I wrote until my hand gave out.

That was not the end of the evening, but it was the end of the interchange with Jamie, RN and it’s all I wanted to go into for tonight as it is getting late, very late and I needs must go to sleep.

Health, Mental Illness, Writing

Recovery: A New Definition

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My comments on this article will follow it. If I can I may highlight points that I particularly wish to discuss.

New Working Definition of ‘Recovery’ from Mental Disorders and Substance Use Disorders

ScienceDaily (Jan. 5, 2012) — A new working definition of recovery from mental disorders and substance use disorders is being announced by the Substance Abuse and Mental Health Services Administration (SAMHSA). The definition is the product of a year-long effort by SAMHSA and a wide range of partners in the behavioral health care community and other fields to develop a working definition of recovery that captures the essential, common experiences of those recovering from mental disorders and substance use disorders, along with major guiding principles that support the recovery definition. SAMHSA led this effort as part of its Recovery Support Strategic Initiative.

The new working definition of Recovery from Mental Disorders and Substance Use Disorders is as follows: A process of change through which individuals improve their health and wellness, live a self-directed life, and strive to reach their full potential.

“Over the years it has become increasingly apparent that a practical, comprehensive working definition of recovery would enable policy makers, providers, and others to better design, deliver, and measure integrated and holistic services to those in need,” said SAMHSA Administrator, Pamela S. Hyde. “By working with all elements of the behavioral health community and others to develop this definition, I believe SAMHSA has achieved a significant milestone in promoting greater public awareness and appreciation for the importance of recovery, and widespread support for the services that can make it a reality for millions of Americans.”

A major step in addressing this need occurred in August 2010 when SAMHSA convened a meeting of behavioral health leaders, consisting of mental health consumers and individuals in addiction recovery. Together these members of the behavioral health care community developed a draft definition and principles of recovery to reflect common elements of the recovery experience for those with mental disorders and/or substance use disorders.

In the months that have followed, SAMHSA worked with the behavioral health care community and other interested parties in reviewing drafts of the working recovery definition and principles with stakeholders at meetings, conferences, and other venues. In August 2011, SAMHSA posted the working definition and principles that resulted from this process on the SAMHSA blog and invited comments from the public via SAMHSA Feedback Forums. The blog post received 259 comments, and the forums had over 1000 participants, nearly 500 ideas, and over 1,200 comments on the ideas. Many of the comments received have been incorporated into the current working definition and principles.

Through the Recovery Support Strategic Initiative, SAMHSA has also delineated four major dimensions that support a life in recovery:

* Health: overcoming or managing one’s disease(s) as well as living in a physically and emotionally healthy way;

* Home: a stable and safe place to live;

* Purpose: meaningful daily activities, such as a job, school, volunteerism, family caretaking, or creative endeavors, and the independence, income and resources to participate in society; and

* Community: relationships and social networks that provide support, friendship, love, and hope.

Guiding Principles of Recovery

Recovery emerges from hope: The belief that recovery is real provides the essential and motivating message of a better future — that people can and do overcome the internal and external challenges, barriers, and obstacles that confront them.

Recovery is person-driven: Self-determination and self-direction are the foundations for recovery as individuals define their own life goals and design their unique path(s).

Recovery occurs via many pathways: Individuals are unique with distinct needs, strengths, preferences, goals, culture, and backgrounds, including trauma experiences that affect and determine their pathway(s) to recovery. Abstinence is the safest approach for those with substance use disorders.

Recovery is holistic: Recovery encompasses an individual’s whole life, including mind, body, spirit, and community. The array of services and supports available should be integrated and coordinated.

Recovery is supported by peers and allies: Mutual support and mutual aid groups, including the sharing of experiential knowledge and skills, as well as social learning, play an invaluable role in recovery.

Recovery is supported through relationship and social networks: An important factor in the recovery process is the presence and involvement of people who believe in the person’s ability to recover; who offer hope, support, and encouragement; and who also suggest strategies and resources for change.

Recovery is culturally-based and influenced: Culture and cultural background in all of its diverse representations, including values, traditions, and beliefs, are keys in determining a person’s journey and unique pathway to recovery.

Recovery is supported by addressing trauma: Services and supports should be trauma-informed to foster safety (physical and emotional) and trust, as well as promote choice, empowerment, and collaboration.

Recovery involves individual, family, and community strengths and responsibility: Individuals, families, and communities have strengths and resources that serve as a foundation for recovery.

Recovery is based on respect: Community, systems, and societal acceptance and appreciation for people affected by mental health and substance use problems — including protecting their rights and eliminating discrimination — are crucial in achieving recovery.

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At first, I admit, I read the basic definition of recovery and was unimpressed, in fact massively under-whelmed. All I could think was: “A process of change through which individuals improve their health and wellness, live a self-directed life, and strive to reach their full potential” pretty much describes how anyone should live life. What is so unique and different, I wondered, that this should say anything about recovery from mental illness or substance abuse or that we should care about it? I almost threw up my hands and neglected to finish the article, which would have been a pity as it was worth reading, even if some of the conclusions were a little “pie in the sky,” given the economy and current attitudes towards “entitlements” and public services.

 

Health, Home, Purpose, Community. Four essential supports for anyone who is attempting to sustain recovery. But as the red words make obvious, it is hard to have a safe and secure home when you don’t have a job, and it is impossible to find a job when you have never worked before and are only just now entering the workforce years late, even as so many others, vastly more experienced, are being laid off.  So without those, independence, income and resources go out the window, and with them often go the hope that things can change. Surely if this is often the case for “normal” people, we should expect it also for those with substance abuse problems or mental illness.

 

Poverty is draining, mentally, physically and spiritually. And it does not foster recovery. But it is a fact of life for many of those with addiction problems and/or mental illnesses. As so many researchers, sociologists and psychologists know, raising oneself from poverty, even in good times is difficult. In hard times such as these, unless you happen to be lucky enough to have a family with resources (in which case you are not truly poverty-stricken) or to reside in safe subsidized housing with enough foodstamps to live on, you are out of luck. How can anyone expect recovery to blossom in such circumstances as hunger and homelessness, not to mention a lack of medical care and medications…But I agree, if health and home can be obtained, then purpose and community can be sought, and the four are indeed recovery’s under-structure; without any or all of them, a person’s stability is easily undermined.

 

I really liked the guiding principles of recovery, though. Hope is the sine qua non of recovery. If you do not believe that you can get better, do something, feel better, then you will never get there. It once helped me, I thought, that others had hope for me, kept hope alive when i had no hope. And perhaps it did. Because it kept me alive, at a minimum. But it did not help me recover. It was only when I started to feel some hope of my own that recovery began to be possible. In fact, I believe it was only when I began to take up art, teach myself something new, and discovered a brand new interest, talent and passion, that suddenly something opened up in me, in my brain and heart and soul, and hope sprang forth. I had a purpose. I had a purpose, for the first time in decades. I had always had writing, but somehow this was different. For a long time I wasn’t sure why. Then it occurred to me: even if I was only drawing at a table, it was physically active, which meant that it woke me up rather than being dependent on my being sedentary and staying alert. That was the first joyous thing about art: it stimulated me, it kept me awake rather than by its sedentary nature putting me to sleep. I loved writing, never get me wrong on that, I used to love reading when I could attend to books, but because of narcolepsy it was so terribly discouraging that whenever I sat down to write or read I had to battle daily the demon of drowsiness. No matter what I did. Nothing ever helped for long, not even Ritalin. Not, exercise, not diet, not sleeping at night, not, well, nothing. I found Zyprexa such a miracle drug, one that helped me attend and read, but that, that was so sedating in and of itself, that without mega doses of Ritalin, I could barely stay awake to read a few pages.

 

Somehow, though, art found me, and with it hope was  roused. Simple as that.

 

Or maybe not so simple. First of all, I had to give myself permission to do art. I had to say, it is okay if I don’t write all the time, art is “just as good” as writing, even if my father looks down on it. Many people think art is even better than writing! And I do not have to live to please my father, god knows, though his capacity for devastating judgment is ever mauling my shoulders like a great lion. But what he likes and values, are not absolutes, they are opinions not morals. He is not god, God knows, and I do not need to listen to or absorb what he tries to get me to take in, subliminally or explicitly.

 

As the next Recovery Principle implies, recovery comes from within, is person-driven, so I had to tell myself that no one could tell me how to do my life but me, and if art kept me alive and awake, so be it. Maybe it wouldn’t be his choice, but so what. It wasn’t his life either, was it?

 

Recovery cannot be coerced or compelled, only determined by the individual. I would add that treatment too ought to be person-driven, person-determined. That treatment, in-hospital or out-patient should NEVER be coercive  but person-centered and self-determined. Why? For the same reason in both cases: It works best that way. Coercion never works; it may appear to but it only breeds trauma and ill will and resentment. It doesn’t foster either health or recovery. Period

 

However, that Recovery is holistic? While I agree, I had to laugh at the following: “The array of services and supports available should be integrated and coordinated.” I dunno about the “array of services and supports” in your state, but around here there ain’t no such thing…I mean, there are very basic services, like Foodshare and the Food Pantry and hospital inpatient units. But aside from that, and the visiting nurse service that provides/assures medication administration and that grows more precarious every month, I dunno about anything that counts as an “array of services and supports” in this state. I  do for myself because sure as shooting the state isn’t going to provide it. Array of services and supports, my eye! You get an appointment for medication every 3 months, in a clinic, and that’s it. And as for integrated and coordinated? What a joke. Who is going to do that? That is like the Centers for Medicare and Medicaid setting new strict regs for seclusion and restraints, and making accreditation of hospitals dependent upon their proper use, and then when it comes time for their yearly review, the psychiatry service isn’t counted or even looked at. Anyhow, I am digressing more and more as I go, I apologize.

 

Finally, as you know if you have followed my blog, I have had many words to say about traumatic experiences, so I am appreciative of these principles taking the role of trauma into account. If I may read between the lives, since they are talking about “services and supports” being “trauma-informed” perhaps they do mean to  speak to the seclusion and restraint issue, as well as the fact that many people have been traumatized and should not be coerced or re-traumatized by treatment. The final passage about respect, however, says it all. No one would have to say a word to anyone providing services and supports about being trauma-informed, if only those needing treatment for substance issues or mental illness had always been treated with respect and dignity.

 

My apologies for the ineloquence of my writing today. I am coming down with a cold and am not writing up to par. Perhaps the next time I will be back to my usual self.

Blog, Schizophrenia, schizophrenia.com

Original WAGblog is back!

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So

Hey everyone, I just found out that the original Wagblog at schhizophrenia.com is available. I started that blog in 2003 and in 2008 there was a server accident in which it seemed that my entire blog had been lost. I just happened a minute ago to try looking for it, and lo and behold it seems to be back. If you are interested in all my posts, from the original site, go below.

Good luck. I think this link will get you there. (I am writing this on my ipad so all of this is new to me. I hope that the program works here as well  as on a computer.) I think it will work now, but if not, try putting the address in manually until I get to a computer to do it properly.

http://www.schizophrenia.com/pam/

Blog, Health, Mental Illness, Psychiatry, Reflection, Schizophrenia, Writing

Shock Treatment (ECT) in 2004

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

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

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

The Ogre Has ECT: 2004

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

“May I come in?” she asks politely.

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

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

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

“What principle is that?”

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

“Aah…”

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

“I see you have a sense of humor.”

“You should see me…”

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

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

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

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

“Do what?”

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

“You’re done.Go eat some supper.”

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

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

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

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

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

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

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

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

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

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

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

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

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

Then she turns and is gone.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Art and artwork, Book, Drawing, Medication, Mental Health, Mental Illness, Schizophrenia, Uncategorized, Writing

From Memoir Sequel — A Little Bit to Entice?

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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.

Book, Health, Mental Illness, Poetry, Schizophrenia, Uncategorized, We Mad Climb Shaky Ladders, Writing

Poems about Schizophrenic Symptoms: Word Salad and Delusions of Grandeur

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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.
Acceptance, Health, Mental Health, Mental Illness, Reflection, Trauma, Writing

Psychiatry and Authority: Restraints Update

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

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

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

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

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

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

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

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

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

Moving right along…

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

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

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

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

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

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

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

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

“I do, I have!” I replied

“Well?

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

That’s enough for tonight.

Blog, Poetry, Writing

Brad P. Olson’s New Poem: a Must-Read

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I loved this small gem of a poem, which I hope Brad doesn’t mind my stealing off his site and posting here. It can also be found at Brad’s site:  http://bradolsonwriting.wordpress.com/

The Day You Were Born

For Grace

The day you were born

I held you swaddled
in the crook of my arm.

Now, 10 months later,

you turn your head
as I try to wipe your nose.

I could hold your head still,

but, to do that,
I’d have to put you down . . .

I don’t look forward to the day
when you’re too grown up

to carry from one place to another.

© 2011 by Brad P. Olson. All Rights Reserved.

Art and artwork, Nutition, Poetry, portraits, Uncategorized, Writing

African American Woman — FInished Drawing

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Sophronsie in white hat

This is how the final version of the unfinished sketch that I posted below finally turned out. I managed to print out the photo of the sketch using a photosmart inkjet printer and watercolor paper, spray that with fixative so the ink wouldn’t smudge under erasures, then draw on top of it as if it were indeed my original sketch. In such a fashion, I was able to re-complete it “better” as it were than the original “wrecked” version. And indeed, I believe it is a great deal better than the version as shown below, for all that it is a complicated combination of photographic print-out of the original sketch, combined with an overlaid color pencil drawing. The strange thing is that in the end, because of the rather poor quality of the original sketch-photograph, the background came out this dull, slightly  green color (due to the lighting, not the paper it was on, which was actually white. Nevertheless, it turned out to be a perfect background for the finished drawing, and so I did nothing in the end but finish the portrait against that greenish background.

A technique I am learning/teaching myself is  one I thought I would never understand, let alone be able to do and that is how to do a kind of underpainting of whites or light colors, the highlights, before adding the darker tones.  I do not know, of course, if one is actually supposed to do that with colored pencils, but I did so anyway, figuring it might be time to try it. So given the original sketch to work with, I then heavily applied light peach and white tones where you can now see the lighter areas on the face, and only much later softened them with the darker chestnut browns and darker umbers, though clearly much peach shows through where the light is meant to strike the face on the left.

A  “real artist” would know how to do this beforehand, I expect, but I had to learn as I went, so it was all a process of delightful discovery, which is why I hope you will forgive me the foregoing description. It always amazes me to find out how many colors there really are in what seems to be a solid colored expanse, when you really look at it. I used blues and greens in Sophronsie’s skin tones as well as the peach-tones and whites. There are also some yellows and reds. And in some places I even used a silver pencil. It took me a while before I could even understand that the whites of the eyes are not white at all, not even slightly blue all over, but all sorts of colors, and that only if you painted them in a kind of pale multi-color would they begin to seem realistic. What is also interesting is that comparing the “white” skin on the child that I did in the earlier picture, or any of the other “white” portraits compared to the African American portraits, there is really not a great deal of difference in the colors I used. In fact, I start out with the very same peach and white for both skin colors, and only towards the end does this change, when I add darker tones for the darker skin, but it really only takes a little, and then not a great deal. This is so striking because it seems to say, in some profound way, that when you really look at all of us, “under the skin” (which skin people take for being so different) we really are all the same.  Of course in every real sense we are the same, despite our differences as individual human beings: genetically this is true, and philosophically, and morally and spiritually and in every other sense that matters, at least to me. We are all human and of the same “stuff” and nothing else matters. Nothing.

__________________________________

(There are not supposed to be any gaps in the following poem but for some reason it doesn’t cut and paste as it should and so it appears with the spaces…ignore them..)

HOW CAN YOU EVEN THINK SUCH A THING?

There’s no excuse for it, I know, there’s none at all, but reading

about the death of the famous poet’s poet wife from cancer,
so cachectic and etiolated her limbs are thinner than a Giacometti
I find myself disgustingly hungry and envious, both.

It is not that I want to die, not even slowly, not even

an after-the-fact-romantic death recalled for years

by other poets. No, I like life, I even like living.
But I want this house, yes, I want this small empty apartment
filled with food rich and fattening as truffles, dark, creamy truffles
made of French chocolate and wrapped in tissue-thin edible gold
so expensive it’s a mortal sin to eat even one as long
as Africa starves and cholera saps the strength of flood victims
in Pakistan. Except that leaving them to melt and flow molten

on the August windowsill feeds no one while I, longing,

linger over my dish of celery and one small onion, lusting
to taste a life I can never enjoy, to taste a lust not for chocolate
exactly, but for the life that rich chocolate represents,
appetite throwing wide its arms and crying, Yes, yes, yes!

ALS, Art and artwork, Book, Poetry, Uncategorized, Wisdom House, Writing

GREETINGS FROM WISDOM HOUSE! (Plus an unrelated word or two about PARANOIA)

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Photo by Sr Jo-Ann Iannotti OP

I hope I am not encroaching on Sr Jo-Ann Iannotti’s copyright, by sharing this photo, but if I am I trust she will let me know. In any event, this is one of hers  and it is everywhere at Wisdom House. I believe it is a beautiful example (if that is the proper word for it) of the spirit of Wisdom House. Of course, the physical labyrinth, is stunning by itself, but somehow this photo captures the experience of walking it  and the process of meditating and “being there” in a way that mere words describing likely could not. Surely, if nothing else,  this photo alone is a wonderful way to “advertise” Wisdom House, if it ever needed such a thing.  If you can, visit http://www.wisdomhouse.org and look at the virtual tour photo gallery. That way, you will get a good idea of what the place looks like, and perhaps get something of the flavor of people’s first impression. I know that even the first time I came here, despite my misery concerning all that silence, I knew it was a special place…

Jo-Ann says she has no idea who the woman in the labyrinth center is, that it was a fortuitous shot and nothing more. Frankly, though, I suspect getting the photo took more than mere luck, even just to have been there to capture it!  It exquisitely represents both the spirituality of this place as well as peace and peacefulness.

Clearly, you can tell where I am: at Wisdom House again, having a good time this time. I only wish I did not have to depart tomorrow.Even though I spend most of my time alone, the mere presence of other people, laughing and talking and obviously having a great time, buoys my own spirits and makes me laugh aloud myself. I think it is great that they are laughing so uproariously, and it is great to see everyone with their doors wide open, people, women my age, sitting on each other’s beds, gabbing like college girls. The lovely thing too, about Wisdom House in general is the absolute faith in people’s basic trustworthiness: NO one has a key to their rooms, and no one seems to feel worried about anyone entering or stealing a thing. I frequently leave my computer and writing equipment right out in the open on the sun porch, without the least qualm, feeling secure in the knowledge that everything will be just as I left it when I return. Indeed, the sense of trust that I know Jo-Ann has in people is infectious, and I somehow know that everyone who comes here is trustworthy at least for as long as they are here, even if they might not be all the time when they are not.

Now, I may be naive, but I too have been known to be overly trusting, and I think that is a better option than not trusting people. At the same time, though, I can be extremely paranoid as you know, and I do mean “at the same time…” I suppose that is difficult to comprehend: I will simultaneously give away whatever I can, if I feel I own too much and yet also feel as if people are secretly stealing from me, taking things I need out from under me, without even asking or telling me, which makes me angry, because I am already generous, and never ask for a single thing in return, but I’m sorry and feel bad to admit it, but somethings I am not ready to simply have things taken from me without my say so! I feel guilty about this, though, as if I am so attached to material things that I cannot part with something that someone else needs more than I do (for why else would someone resort to stealing it???). Why do I need to be so attached to anything, that is, to any mere object? It will never save your life or your soul!

I am drifting though…forgive me.

One great thing about this weekend here is that despite my having slept till noon today (after spending several days before last night with very little sleep, and even last night beginning to fear for my brain and my sanity due to sleeplessness as I was up till 4am involuntarily) I have pretty much gotten the book organized and put together. Now, that means only that I have made the organizational decisions, which is the major part of the problem. But I needs must (!) still go through the actual computer manuscript and change it, to make it conform to these editorial decisions. Not extremely difficult, just time consuming. At the same time, certain poems need editing and some rewriting/fixing. This I enjoy, the perfecting of the lines I don’t feel are quite right yet, but it takes time and energy. (I even have a two relatively new poems to add!) Alas, I will not be able to come up here to take the time for myself to do nothing else. Too bad, as it has been very convenient and much more than that. It has been, well, useful in the sense that I have been productive “to the max,” able to say NO to email and phone calls, not even walking with Diane L or doing laundry or cleaning or shopping, just writing all day. I suppose taking my usual 2 miles walk would be a good thing, but for just a weekend here, I would rather not…And although I brought art supplies just in case, I haven’t even taken out my sketch book, that is how good the writing, and the editing, have been going!

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Speaking of the labyrinth at Wisdom House as I did at the top of the post, let me segue into a few words about paranoia: I have not walked the labyrinth, nor even approached it. The closest I have come is to sit at the top of the stairs looking down at it relatively from afar. The very idea of “doing it” makes me feel both rather shy and then scared to do so. I am in fact scare that God might strike me down, should I have such temerity as to try it.  I am also squeamish, not sure I could relax and not feel paranoid, not feel so much on display  that I could not concentrate or let myself be “unaware of being observed” — whether I am in fact under observation or not.

That of course is the essence of paranoia: it matters not a fig whether something is really happening, it matters not another fig if someone’s really after you or really against you: if you feel it, if your amygdala is working overtime to generate that feeling, the intense feeling of fear that it is meant to generate, well, that’s it. That is how you are going to feel. And “the feeling is primary.” That’s what Dr O told me time and time again. You feel the fear first, and primarily, and then the story or reason for feeling it attaches to it. But if the fear  gets entrenched or doesn’t go away, the story,, that is, the brain’s explanation for the feelings of fear only gets more entrenched, because how else can you deal with fear? It is extremely difficult to feel fear unmitigated without somehow understanding it as coming from somewhere, or being stimulated by something, having a cause or reason. The brain always wants to make sense of things, and it does this whether one “wants to” or not.

So even though I am aware of what paranoia is, I have never been able to control my thoughts when it is happening. It is only after the fact that I can, now, sometimes, look back on a difficult situation and with a clearer head understand how I might in fact have been paranoid in my behavior due to my fear- induced understanding of what was going on. It is very very difficult to override such feelings, esp on such  a fundamental level.

I wish I could write more now, but I’d better to get back to my writing before I have to get back to sleep. As it is, it is 1:50 A.M. and we — Ann W drove here with me — the other fellowship person — have to drive home tomorrow around noon. I wish dearly it were not so, but there you have it. For now, I will leave you with a poem that will go into the manuscript of my second book of poems, which I call at least for now (several people have been enthusiastic about the title, except my father), LEARNING TO SEE IN THREE DIMENSIONS. I share it with you now, because while still unpublished, I do not think I will seek publication for it elsewhere, separately…The first one, for my old (and former, but possibly dead now) friend Roland, was previously published, but in a much different version. I apologize if the lines come out with large spaces between them, but the cut and pasting function never seems to allow single spaces… OR stanzas for that matter, as this poem was originally broken up inot five different stanzas but now appears to be in only one long one… The second poem is about Joe, and describes my own encounter with fear of botulism, which has similar symptoms to ALS — so I feared — and my nostalgia for his voice, which I will never hear again, except on his answering machine, and on one or two micro-cassette tapes we made some years ago…

FOR A FRIEND SUCCUMBING TO AIDS, 1980s

For Roland

This could be your whole life,

thumbing a ride to wherever the cars are going,

the casual, tossed out hellos and good-byes

that turn around the axle of your quick life —

that far, just that far, and then you will stay,

forcing a stranger’s town into the shape of home.

Yet you’ve lived a dozen lives — in the Keys

with the one you finally loved, in western Portugal,

Nova Scotia. Last year, already marked, you spent

the winter in your bed,which just fit in a backyard shed

in Vernon, Connecticut. And there was a life

to accommodate each place, its sweetness and pain.

When we met, you taught me the local architecture,

the difference between Georgian and Greek Revival,

and you thanked me for the poems you gave me.

Then you called late one night, drunk enough to over-

dose. Thoughtlessly, I rescued you, a dying man…

You never forgave nor spoke to me again.

Now once in a while a car slows, pondering

your beard, your emaciation, the known and unknown

risks, sees you finally, and explodes away from the shoulder

where you stand, all its doors locked simultaneously

against those Kaposi’s inflorescences that stain

your dying…Roland, Roland, don’t you know

we all die in shame and alone? We die, perhaps,

not far from home, or perhaps, like you, wandering,

waiting for the one car to cross the bridge

whose toll is so high we all pay with our lives.

WORRYWART

Tonight I’m up late worrying

about a badly canned chestnut puree

and botulism, which is useless

since I’ll know soon enough from

what the Merck Manual describes as

“difficulty speaking or swallowing,

drooping eyelids, double vision,

lassitude and weakness progressing

to paralysis” that I have it

or not. Not very likely with only

130 cases in the U.S. in a year,

but as I said, I worry, and worry attaches

to anything: leprosy, asteroids falling

from the sky, dirt on your hands.

Most people worry too much

about things that won’t matter

after six months. My friend doesn’t

have to worry about those. He is

losing his speech to Lou Gehrig’s. In six

months who knows what won’t work

any longer or which will matter

most. His assistive device says

the words he types, but how I miss

the sound of his voice, which I’ve forgotten

except when I call and the old

machine picks up: Joe speaking.

I can’t answer the phone right now

but I’ll call you back as soon as I can.

Uncategorized, Writing

Back to Wisdom House: Another Try…

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Yes, I am going to visit Wisdom House again, this coming Friday and stay the weekend…

But I haven’t even told you about the first time there, so forthwith I will make up that lapse.

I had no difficulty driving up to Litchfield from the Hartford area, despite my usual tendency towards sleepiness,. This was largely I think because I left home at 8:30 a.m, an hour after waking, and got there by 9:30, well before my 11 a.m. sleepy hour when I ought never to be on the road (unless well medicated, and armed with a strong cup of coffee to boot). Barely had I gotten my suitcase out of the car and was deciding which door to roll it towards, when I heard a voice call, Hello, and saw an arm wave over the hedge.

Sr Jo-Ann is, well, I do not want to say cherubic, because that isn’ the word I want. If I use it, it would only be in reference to her size, and her positive demeanor. Very cheerful, so far as I could tell she was never without a kind smile for everyone. As for her size, well, I am not quite 5’3″ but in comparison to this tiny, tiny Dominican sister, I felt like a giantess! I do not often tower over people, but in Jo-Ann’s case, that wasn’t hard to do. 8D

Be that as it may, we went by elevator to the third floor of what used to be the convent (?) I suppose you would call it, of the Daughters of Wisdom community, first built in the 1940s as a residence and then later with a college added on to it. I must have “lucked out”  because it turned out that I had been assigned a room with a private bath; it seemed that the room had once housed a mother superior or at least a fully professed and senior nun/sister, as opposed to a novice, postulant etc. Now, the dormitories have all been refurbished and turned into single or double rooms as well, so none of the accommodations are anything but just as comfortable, but some do share bath. I had assured them I had no objections whatsoever to doing so. But as it turned out, it didn’t seem that there were many people housed very close to one another, so that shared bathrooms or no, it would have posed a problem either way.

Mother Superior’s room or not, it was just perfect for me,  and really nice. I dunno what I was expecting, a room  perhaps like what I’d gotten when I found myself at that horrible YMCA in New York City (back in the early 1990s when I was so ill and on my way “to Orlando” —   a long story) which was almost literally a cell, just a closet of a room, with a cot, a sink and a hard wooden chair, and that was it. The bed had a stinking blanket and ripped sheets and the walls were dirty and stained as well. The window looked down on a grit-filled air shaft…SO when I saw this room, with a window looking out onto the woods and grass, and a full bed with a nice bedspread, a desk and chair and a small arm chair, I frankly was in love with it immediately. Plain, yes, but exactly my “cup of tea”.

The first words I said to Jo-Ann were “Oh, how lovely,” and I hope she knows I meant it.  Sure, having done some public speaking in various places now, I know that a few hotels, like the Hilton, can be “fancier”, but in terms of where I have been most comfortable, Wisdom House beats them all. The hotels are always too cold, and too, I dunno, cold in every sense of the word, I guess…

But there is more to talk about that just the bedroom, and it is getting late so let me move on. We went for a tour of the building then, and I was astonished at how many little nooks and crannies there seemed to be for a person to hole up in and write or be alone. Now that may have been an illusion of sorts, because I was overwhelmed and it was all new to me. But it seemed that every other room that Sr Jo-Ann pointed out to me was another one she said could be used for quiet times or writing or reading. I was also very pleased by the fact that there were several places where coffee and tea was available literally 24 hours a day.

I had come a day later than others, though, so the quietness of the silent retreat was in full force. This did not prevent Jo-Ann from talking to me, not at all, though we did speak in low voices so as not to disturb the retreatants. But I came to understand that a silent retreat did not mean no one was allowed to talk, only that silence was to be respected and honored as much as possible, or at least that quiet was. But at meals, the spiritual directors usually sat in the talking dining room as did I and Joanne the other writer and Jo-Ann as well.

The first day went all right, as I recall. At least, I had lunch and sort of enjoyed meeting the sisters who were “running” the retreat, in the sense that they were acting as the spiritual directors, and it was interesting to listen to them talk. I had never had any opportunity to be in the presence of “religious” before so it was simply an experience to observe them. And hear what they talked about. But at the same time, for some reason, I felt I had to make sure that Joanne was not left out, because she was younger than I, and I always feel responsible for people. So I would ask her about herself and what she was writing and where she came from etc. And I dunno, all this socializing was tiring to me, and I was glad at least when she left to go upstairs, so I could just sit and listen to the sisters. Until I realized that they were just being polite and waiting for me to get up so they could too! At that, I immediately stood and took my plate to the kitchen, apologizing for keeping them. Which of course, they denied, but what else could they do?

The next day, well, I can barely recall Monday, in truth, except that it was harder to stay sociable and not feel ugly, not feel that I was contaminating and upsetting everyone. At one point, I even left the table abruptly, and clearly upset, not because they had done anything to me or to upset ME, but because I felt I had upset or oppressed them, obtruded in on them, and had to betake mysefl elsewhere so they would have some breathing room. That was when I began to feel I could not stand it any longer. Already the silence had begun to take its toll. I had less trouble at night, because I enjoy the nighttime quiet. But it was during the day, when people were around, but ignoring me, and I suppose ignoring everyone else as well, that it was difficult (the retreatants each had a meeting every day to speak to their spriritual advisors, but I had no one at all to talk with…which was a big problem) Finally, on Tuesday late afternoon, I had had enough, or at least I was crumbling, and called Josephine in tears. I didn’t call for any reason in particular except to hear someone’s voice and talk. But when she heard me she said, “Why are you staying if you are so upset? You don’t need to prove anything to anyone. If you do not like beiing there, just come home, they do not care, and no one wants you to be miserable there. Just come home!”

You know, ordinarily, I would not have listened to her. I would have felt that there was indeed something to prove, that I did have to stay and make myself do what I did not want to do, to “prove to myself” if to no one else, that I could force myself to do what I did not want to do…i.e. punish myself, discipline myself, stick it out, despite my discomfort and misery…all the old sadistic childhood lessons. and because I think if it feels bad, if it is hard for me, it is probably GOOD for me, rather than just simply something I do not enjoy…

For some reason, though, this time I heard Josephine, I heard the sense she made when she said that NO ONE CAREs if I proved anything…No one wanted me to prove anything and I was NOT in fact proving anything to anyone by staying. She was right. She was absolutely right. All I was proving that I could make myself miserable yet again. “Go ahead, pack the car and call me when you are leaving,” she said, and I finally answered, “Okay, you are right, I am on my way. I’ll call you when I am in the car.”

Luckily, I thought, everyone was at afternoon mass for the first half-hour of my packing up and carrying things to the car. It was only during the final trip to the parking lot, when I carried my pillow and sweater out, that anyone saw me. I kept my eyes averted and my head down, pretending nothing was wrong. Why make eye contact now, when it was too late? But I did catch a glimpse of Joanne, the writer, sneaking her dinner on a plate and bringing it upstairs to her room. I wondered whether she was too busy writing to eat in the dining room, or if perhaps she was as miserable as I was…

Finally I was ready to drive off. Just as I was about to  call Josephine to tell her I was on my way, I thought  about Sr Jo-Ann and decided I really ought to tell her I was leaving. I knew in my heart that she would not try to make me stay and would not reproach me for leaving, but I was embarrassed for her to see that I was quitting, frankly. And I didn’t want to be a burden on her. That was what stopped me from trying to find her in the first place. I called her this time though.

“Pam, is that you? Would you mind if I came out to the parking lot to say good-bye?” Jo-ann asked.

“No, not at all.”

I stood up outside the car so she could find me, and by the time she approached me, I was in tears all over again. I am afraid I cannot now remember why, except that partly what upset me so, aside from the sheer loneliness and isolation, was that being there with all the sisters and the religious aspects of the place, had brought up a lot of memories and old feelings in me. Maybe some not so old feelings as well. I had been reading Thomas Merton, or trying to, and yet the very fiirst pages of his journal, Entering the Silence, about his “becoming a writer and a monk” were so terribly disturbing and even destructive to me that I could not bear reading any further.

I spoke to Jo-Ann about all this, and about Joe as well, and about our small argument and my big reaction to it, my exhaustion and inability to decide how to have a life in the light of his Lou Gehrigs disease and whether I had a right to one at all…Well, needless to say, if she hadn’t been enormously supportive and wonderful, I would not have made it clear that I would love to come back there for a “second chance” this weekend. No silent retreat this time, either. This time the N.E. Choristers and singing will fill the rafters. Which should be jolly  to the max. I look forward to it, but if for any reason I can’t stand it again, (which I surely hope will not be the case) I now know that I can seek out Jo-Ann, one, and, two, that it is perfectly okay to say, Enough is enough, and go home.

Poetry, Writing

“NEW” POEMS FOR WAGBLOG

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These are admittedly older poems once-published, but they are the best I can offer at the moment for the reasons I explained, that contests and publications insist that any poem one sends to them never have appeared anywhere else before, including on the internet. Needless to say this is a major bummer, since my blog can hardly count as publication nor pose as wide distribution, seeing as how I get maybe 100 hits max a day (mark you, all, including you, my loyal lurkers, are oh so valuable to me, and if you remain my site’s only visitors, so be it. At least you are there and if so, that will be enough for me.)

The first poem describes a real, which is to say, factual incident that happened to me some years ago, while the second concerns, as may be obvious, a complete fantasy, but one embedded in the real  exercise of learning CPR. I describe it literally, as it was taught back in the 80s without so much as a dummy to practice on. I will continue to add others, either at the end or later, if I can find others that have already been published, or that I am certain I will not try for. For now, I hope these have some merit, despite their age.

POEM FOR REGINALD

It is winter, four o’clock in the afternoon.

A drunk, not yet dead on his feet,

accosts me, says,

“Hey, are you a college girl?”

I am not a student anymore—

It has been years since I went by bells

from room to room,

scribbled frantic exams

in booklets bound in blue.

I look young, I know that. My hair is not

yet gray, and perhaps that is why

he asks the question.

“I read books, too,” he tells me,

falling into step beside me

though he had met me coming the opposite way

and I am hurrying to be out of Dutch Point by nightfall.

He walks me all the way up to Main Street.

accompanying me through the backyards of tenements

past lounging men who might have wished me

less than well.

Though he insists on staying on my right side

like a gentleman, some primitive fear

urges me to shift my purse

to my left shoulder.

He is a genius he tells me, and I believe him

But he is an alcoholic and his breath smells

as if he has been drinking.

Still, I am not afraid of him

and when he asks, I tell him my name.

There is something sad about him.

He says he thinks I can cure him,

could marry him.

His name is Reginald.

He speaks like an old friend

and suddenly I am lonely too.

That is all. There is no moral to this tale.

I am thirty-five, single, childless, and lonely as a drunk

offering me company at Christmastide.

We come to my building. He leans closer.

When he hugs me

I hold on tight.

ON LEARNING CPR, 1986

So many things can go wrong

and it is surely a wonder

we live at all.

Playing dead, my partner, my spouse

does not answer when I

jostle him at the shoulder

speak his name

and I in more terror

than my own body needs

this being a dry run

and he healthy as apples.

But he has taken on

the “death-like appearance”

necessary for this role

and I must act,

pretending dexterity and expertise

when my own heart

threatens to shudder and fail

if I can’t get it right.

According to the booklet

the Red Cross has given us,

brain damage occurs

after four minutes without

oxygen. It is up to me.

And so I do as I must,

feigning compressions of his chest

making his heart beat for me

at the rhythm I choose.

I scarcely brush his lips

with my own in pretended ventilation,

but breathe on his cheek

and scout his chest

for  signs of life returning

So much I have taken for granted—

I am scared by the awful fragility

in the balance of one life before me.

Then miraculously, he revives.

I can see his chest rise and fall.

I feel a pulse in his neck

and moist air on my cheek and ear.

“Thanks, love,” he whispers,

with a smile no one else sees

and sits up.

It is over.

But tonight while he sleeps

I will count his breaths.

I will touch the pulse in his neck

gently, gently. I will know

the miracle when I see it.

Art and artwork, Book, Narcolepsy, Poetry, Uncategorized, Writing

Trip to Wisdom House

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I have decided, with Sr Jo-Ann’s help, to arrive at the Writer’s Fellowship on Sunday morning, rather than Saturday evening, so that she can meet me, rather than have me face a crowd of fifty (silent) people alone. It was in fact her idea, but she offered to take me individually on a tour, and show me where to go and so forth, introduce me, which she thought she would have more time for on Sunday morning than on Saturday when everyone else was arriving. This also was a relief for the simple fact that I am so frantic with things I have to get done that it helps to know I have all of Saturday simply to relax and if I haven’t done so before, to pack. It isn’t as if I am bringing a great deal, not many clothes or “stuff”– after all, I am mainly going there to write. But that in itself entails bringing such things as my computer, a printer and a ream of paper at a minimum, and I want to bring a small hot pot and cup and coffee as well, since I cannot rely simply on sheer excitement to keep me awake, no more than I ever can. Not even Ritalin, which as you may know I have taken for decades to combat the nearly constant and excessive daytime sleepiness of narcolepsy, really keeps me alert. In fact, often coffee does a better job…On the other hand, I intend to take Zyprexa every day I am there too, which is sedating. This is just so that I know I will be able to read and stay as unafraid of things as possible. Once I get home, I’ll stop taking it, but why not keep on top of things as long as I am there?

I have written several poems in just the last week, but alas, I am unable to share them here.  I have learned that many contests and publications do not allow the appearance on the web of poems you want to submit to them or enter there, or else they will be disqualified. Thus I can only post ones that I am certain I will not try to publish or else that have already appeared in my book or previously in another journal, review or magazine. I wish that were not so, as I am thrilled with some of these poems. I also wish that I had not been so quick to enter a few of them into a certain contest, as with a little more rewriting, say, the 110th version rather than the 100th, I might have felt even better about them. Ah well, too late for recriminations. If a given poem is not accepted where I sent it, there are a thousand other venues that might take it when I submit it again.

Enough for now, it is already late and I needs must (how’s that for an archaic expression?) get to work finishing up the dishes and printing out poems. I will need at least 60 for my second book and I have to have copies I can work on at Wisdom House. There are a dozen other things to do before I go to bed tonight…zo I will bid you adieu, au revoir…

I hope I can post something from Wisdom House next week, but if not, I will do so when I get back. Hasta la vista!

ALS, Art and artwork, Uncategorized, Writing

Writing Fellowship at Interfaith Center

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Sorry for my  long silence. Things have been busy at best, sometimes just plain hectic.

On the good side, though, this: the Writing Fellowship. A place called Wisdom House in the northwest hills of Connecticut offered free fellowships of 2-10 days for low-income writers from this area to come and stay to work on a writing project. I applied immediately, wanting time to organize, come up with a title, and send out my second book of poems to the Barnard women’s second book contest. Well, after speaking to my references and to my new psychiatrist, they accepted me, the sister in charge calling me last night at 9pm to give me the news. (As my friend, Leila, put it when I told her how late the director called, “nuns do not keep bankers’ hours!”)

Now the only reservation I have vis a vis the fellowship is that it is going to be held while the rest of the center is on a “silent retreat”. This means that everyone else,  aside from the two other writers and me, will voluntarily not be talking the entire time. According to Leila, they will not be looking at others or even raising their eyes. While I wanted time to write, I have to admit I anticipated a more convivial atmosphere, or at least a less daunting one. This does not sound exactly friendly. Spiritual, yes, but not friendly. Sr Jo-Ann does, on the other hand, and she has offered her help in any way she can (since I have been more than open about my illness) but I don’t know that she understands quite how difficult I may find this. Even the problem of getting to the dining hall, the speaking one or the silent one, or eating with other people, should I manage to get into the building wherever it is, may pose a huge obstacle, if my experience at the art and crafts center two years ago is any predictor.

Well, I am determined to go, so I will not let my reservations, nor even the tears I shed last night in sheer terror stop me. I must confess however that I am not without mixed emotions in face of this overwhelming silence — and the resulting loneliness or something much worse — I fear I may confront.

On a somewhat brighter note, for six week, I took an art class in New Haven, at the Creative Arts Workshop. I wanted to learn the rock bottom basics, which I figured I needed to start with. Even though I have successfully painted some portraits, I know I need to learn fundamental techniques, both in drawing and painting so I’m not just floundering around, painting more in hope than with real confidence and skill. But getting to the class meant that I had to drive to New Haven — on the interstate —  for the first time in more than 20 years. Unable to drive home that same night, I spent two days a week there, staying at my parents’ condo, usually with my father there (my mother was usually at the shore, at the other house). I enjoyed that part of it almost as much as the class. We were so long estranged that I love just seeing him and getting to talk with him, no matter what we talk about.

The class might easily have been too much for me. Three hours of drawing could have sapped all my energy and taken the enjoyment out of it. Instead, somehow the time just winged away, and after the first class, which was the most tiring because I had not yet adjusted to how long a span of time 3 hours was, I got into the rhythm, and never once left early. In fact, I often left with the teacher, just so I talk with her about art.

Now, I say all that as if it were easy and not problematic at all. Certainly no one in the class would have any idea that I feel as I do, but in truth I became quite certain, and remain so, that the teacher soon grew– how do I put it? — sick of me. Overwhelmed by me. Found me overbearing and overly enthusiastic and therefore unpleasant. I know my presence was too much for her to take and so I tried to tone it down, tried not to ask too many questions or talk too much so I stopped staying after class, or showing her what I had done during the week…And frankly, I am a little scared that if I sign up for her next class, which will be a continuation of the last one, it will upset her and she won’t want me there.

In point of fact, I felt the entire class was laughing at me most of the time, that they agreed with her and that they mocked me whenever I left to use the bathroom or to wash my hands of the charcoal that we used so often.

It was only just before the final class, when I brought my sketch pad and showed two people what I had been practicing, that they seemed to realize that I was serious about drawing and art, and not just a foolish older woman taking a class for entertainment. One young woman, Jennie, actually talked to me then, and said I was “very talented.” When she asked for my Facebook page, I gave her the name Pam Wagner, which of course she will never be able to locate me with, alas, as I would be happy to communicate with her.

Nevertheless, I remain wary of the teacher, and of taking her next class, lest I be more than unwelcome. Lest I be bothersome and actively hated. I feel it incumbent upon me to spread myself around, spread the burden around, spread the miasma I cause as wide and therefore as thinly as possible so as not to sicken anyone seriously. The only real solution I can think of though is to completely shut up and be as minimal a presence there as I can. To not be visible in any way, to make no sound or impression…To do the work, and learn what I can, without, so to speak, making a mark. That way I won’t bother anyone or disturb the peace, or anyone’s peace of mind.

Then there are less positive aspect of being “busy” — Well, no, I cannot dig into this at the moment, except to say that I need to take a break from seeing Joe. Joe, if you recall, is my long-time friend (24+ years), who has Lou Gehrig’s Disease and has been in hospital for 3 years, mostly paralyzed and on a ventilator. I have visited him almost every week, sometimes twice a week, all of that time, but now I need to take some time for myself, take some time to think about what to do.. It is true that I have sometimes been away for as many as 6 weeks, but that was when I was hospitalized, and while to Joe it may feel only as if I am absent — who cares why!– to me it is not voluntary time off and certainly no vacation!

I love Joe, but only as a friend, not as a girlfriend despite what people think. And if the people in the hospital believe otherwise, it is only because I told Joe when he first became ill, that I would “be his girlfriend” — the one dream he always cherished and held out for and hoped would come to pass for some 24 years! And mostly because it was the one gift I could give him, knowing that it was a dying man’s wish-come-true.

The problem is that when he was in fact dying, when he had terrible aspiration pneumonia and could not breathe without assistance (at which point, most people with ALS, or Lou Gehrig’s, opt to die, knowing what the future holds) he asked to be put on a ventilator. Hence, for the past 3 years, I have had to act the part of devoted “girlfriend” (completely non-sexual, though, just as our relationship has always been). And it has long been assumed that my love for Joe is the sole driver behind my visits. Not pure loyalty, mind you, but in some sense my own selfish need to be with him. It seems not to have occurred to anyone that maybe I do it mostly for him, to help him and keep him company…rather than because I myself want anything from it at all.

This is not to say that I don’t enjoy seeing Joe, or that I resent spending time with him. Most of the time I do not, or when I do, it is only because I feel I cannot say, No, I cannot come today, or worse, No, I do not want to come today, not even when I haven’t slept and am utterly exhausted. Usually when or after I visit, I feel better in some sense — at least about us. I feel less guilty and more needed (a double-edged sword!)

But I admit that it is extremely tiring to have to stand up the entire visit — an hour or two — and pay exquisitely close attention in order to understand what his  computer (which takes eons to do it)  translates from his spelling into speech. When I finally get home after the 30 minute ride back with Josephine, I am wiped out for hours. Even on a good day, the rest of the afternoon is shot just because of visiting him, and that is true even when I only stay an hour.

Well, I said I wasn’t going to go into it, esp not with details, so I will leave that alone, except to say that recently we had a big — what was it? Altercation? Spat? Misunderstanding? Who knows what to call it, but it left me me feeling unappreciated, taken for granted, and most of all, just plain angry. Worse, it induced this exhausted feeling in me that left me hopeless and desperate. That is why I wrote Joe and told him I needed some time off, needed time to reflect and think about things. I did not ask him for it, nor tell him what I needed it for, nor how long it would take. I did reassure him I would be back. But otherwise I simply stated my needs and informed him what I was going to do about it.

I haven’t heard from him since, but unless he is still upset or angry with me, which would be unlike him, he is simply giving me the space I need.

That is all I have the energy and time for tonight. I hope to go out for another of the 2 mile walks that a friend and I have set for ourselves to do as often as we can. We are trying to get in 10 miles a week, but so far I think the best we have done is maybe 8 miles. Still, that is MUCH better than doing nothing at all, which was my usual, until we got together to spur each other on. Usually it is she who gets me up and over to the park to meet her, and I who keeps her going at a great clip. So we help one another and get our gabbing done into the bargain.

Thanks for your patience. I have another entry planned, and hope to work on it tonight for posting tomorrow or the next day — about delusions of grandeur and other symptoms.

Book, Poetry, Uncategorized, We Mad Climb Shaky Ladders, Writing

Jane Crown Poetry Radio

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Okay, all you poetry fans of mine, and anyone out there who reads this in general! This is a rather late announcement, but this Sunday at 5pm Eastern time (you will have to make the proper adjustments if you live in other time zones) Jane Crown, at http://www.janecrown.com will be doing a 90 minute interview with me http://www.janecrown.com/archive_radio/Pamela_Sprio_Wagner.mp3 that will be part personal interview and part poetry reading  both from WE MAD CLIMB SHAKY LADDERS as well as new poems, and she may possibly include some reading and/or discussion about my memoir DIVIDED MINDS: Twin Sisters and their Journey Through Schizophrenia. I hope as many of you as possible will listen, and if you are not interested in poetry will listen out of interest in schizophrenia, as we certainly will speak of that.

By the way, Jane tells me that the show will be archived and “available forever” so if you cannot sit and listen for 90 minutes this Sunday, do not worry as you can do so at any time and for any length of time. Just follow the link or do a search for Jane Crown and radio or poetry and you should find it without trouble.

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Now for an update: Well, first of all, let me say that I want to write an update but first I need to start my review of the poems I am going to read on Sunday, and read a little of DIVIDED MINDS, so I can recall what got into the book out of my 400pp original manuscript and what was cut. So forgive me if I put the update and rest of this post off for a few hours and get back to it maybe after 11 pm tonight. Or if not then, as I must get up early tomorrow, then I will write a new post tomorrow. For now, suffice it to say that I feel extraordinarily HAPPY!

Book, Poetry, Schizophrenia, We Mad Climb Shaky Ladders, Writing

Book of the Year Finalist

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Hi All,

Apparently We Mad Climb Shaky Ladders (CavanKerry Press, Feb 2009) my book of poems about living with schizophrenia, has been nominated a finalist for ForeWord Magazine’s 2009 Book of the Year (in the Poetry category). I dunno what this means, and I doubt highly that it will win, but I am very happy and grateful to have been made a finalist at all. The results will be announced on May 25th  at the BookExpo American, wherever and whatever that is. I’ll keep you posted, or perhaps you can keep me posted…

Here’s the cover of the book just in case you don’t know what it looks like:

Poetry, Prisons, Uncategorized, Violence

Poem: Life without Hope of Parole…

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STATE PROPERTY

The Walls: what prisoners call the Washington State Penitentiary at Walla Walla

Freeworld: everything beyond the Walls

For A.

You’ve been owned by the State

since you can’t remember when,

body, mind and what’s left of your spirit

shackled to a prison more shattering

than the Walls, where at 18 you ended your life

in the freeworld. Hadn’t the big house

always beckoned, ever since the first time

you entered a home and found it

no refuge but a place of pain

and abuse, of neglect so battering

you ran straight into the arms

of a detention center

where at least no one pretended to care?

Who cared anyway about just another

juvenile delinquent with a mouth

to feed? It was hard to say

when mere delinquency — a word

that meant only that you’d left,

that you’d “left completely”

but left what was left to the imagination,

left home, left hope behind, left off caring —

turned from trying to survive to the criminal.

Homeless, hungry, no better educated

than an arrested ten-year-old,  you

stole bread, stole something middle class

and valuable and we, a nation

of Javerts, were too righteous to split hairs

and see you. But somehow an innocent

was killed and now you are up against the wall

in Walla Walla, amidst the teem

and clangor of that crazy

noise-filled space, with no hope, no hope

of freedom and even if it kills you

this time you swear you will redeem yourself,

reclaim and save yourself from the death

of that which still remains humane

in you. One aching brick at a time,

some walls are built, others torn down.

Outside the canteen window,

snowy egrets build their nests,

a beaver slaps the water with its tail.

I don’t remember exactly what happened to place Andy (not his real name)  and his sister in the care of the State, but I know that certain authorities found them huddled in the bathroom of their house or apartment, hungry and dirty and frightened, and from then on nothing was the same. They were separated, for one thing, and Andy lost track of his sister for years. Foster care was a travesty. Though there are, I know, many good foster families and truly giving and loving people who do fostering out of the goodness of their hearts,  Andy did not meet those. Most of the time his  foster parents only wanted the extra cash and he was lucky if he was fed adequately and had a bed of his own. He was often beaten and had to work for his food. Desperate, he made the first mistake, but one that probably set him on the road towards the situation he is in today. He ran away. But for a foster child, a ward of the State, running away is truancy, a juvenile offense and several such episodes, he was considered incorrigible and sent to reform school, where he learned only more survival tactics and more violence.

You see where I am going with this? It may be true that some boys rise above this, some boys find it within themselves to turn their lives around and make something of themselves…But I do not believe that they do it themselves. I believe that some caring adult, someone, anyone, steps in and makes them believe in themselves. Andy never had that. He knew only abuse and more abuse, in the many homes he resided in and later in the various juvenile  centers to which he was sent.

Finally, in a home as a teenager, he turned 16 and , he was an adult in the eyes of the state, no longer their problem, and he was turned out onto the street, unceremoniously, with no skills, no money, voila, no — nothing, but the clothes on his back and was told to get a job and make a life…This is crazy of course. Totally and completely crazy. But that is what happens, at least in Andy’s state, and I suspect in more states than I want to know about. Where do you go when, on your 16th birthday, your foster family wakes you early in the morning, and instead of presenting you with a special birthday breakfast and a birthday present, tells you to dress and get lost, get going, you’re an adult now and not worth anything to them anymore? I cannot imagine what on earth I would do.

Andy fell back on the skills he learned in reform school, like petty thievery (how else was he to get food?) and lying. And he ran with a crowd doing much the same thing. I do not know where or how he coped otherwise, nor where he slept, whether it was indoors or out of doors, nor for how long. I only know that at one point things escalated, and there was a gun involved, or perhaps it was a knife, but in any event, an innocent person was stabbed, or shot, and of the entire group only Andy was apprehended. But Andy was no snitch, and so he said nothing when pressed to tell who his “accomplices” had been, not even when threatened with a life sentence. which is what, in the end he received: Life without HOPE of parole. At age 18. Life without HOPE…

What does that sort of sentence mean, precisely? Well, for one, it means Maximum Security, because all long sentences are put into Max, esp lifers. It also means that at least in Andy’s prison, they wouldn’t bother to educate him or allow him to study for his GED, let alone a college degree. Why waste the money or the time on someone who was never getting out, never returning to the freeworld? It meant a lot of things, but mostly it meant hopelessness. And that was the hardest thing to deal with. That and the fact that you owned nothing, that you could count on keeping nothing, that nothing was yours. At any moment, everything you had in your possession could be confiscated, trashed during a cell search or simply ruined by flooding of the tier by prisoners protesting various atrocious conditions of their incarceration.

Andy knew that if he was to survive, he had to give up all attachment to things, to  everything outside himself, and to know that he was himself, a person, and that no one could take that away from him. He had to know that he could rely on himself alone, and to trust that, no matter what they did to him. And they did plenty. You can read about the Hole, but what really happens there, and even beforehand is truly an abomination. During a cell extraction for instance,  the squad, preparing to overpower the resistant convict, terrifies by virtue of their appearance and their “firepower.” To say that pepper spray is used is to deliberately mislead the public into thinking that the procedures are relatively harmless. A huge blast in the face of a chemical that makes one feel as if one is suffocating and cannot see is applied through the door window, until the convict is gasping and on his knees. Then the real extraction occurs, with an entire team subduing the prisoner, hogtying him in some instances, and removing him from the cell, which will later be trashed during a search.

People are disappeared, people are beat up, people die during a cell extraction, or simply when the guards are angry or sick of someone they can’t easily control and the death is hushed up. People die and nothing is said when a new prisoner is shown to the bunk they once occupied…

Andy has written a book length manuscript about his experience in the worst prison in his state, and  the entire book follows a prisoner through one day in the life of the main character. I think it is magnificent. Andy went from a 7th grade education to writing like a college grad, teaching Spanish, and many other accomplishments, including authoring two book-length manuscripts and a full-length play. I am hoping to find a publisher to take a look at his novel/ memoir. If you know of anyone who might be interested, would you please get in touch with me?

Narcolepsy, Sleep, Uncategorized, Zyprex

Narcolepsy and Sleepiness: I wake and sleep and sleep and sleep

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I am always sleepy. I am always sleepy.  I am always sleepy.

That said, my best time, if I have had enough sleep the day/night before, is after midnight. Dr O — whom if you recall I now refer to as Mary in most other contexts, since she is no longer my doctor and has temporarily retired from the “business” or is “on sabbatical” as she calls it — told me once that the notion of some people being “night owls” and some being “early birds” is a real phenomenon and not just a myth, that in fact there are reasons why certain people like me prefer the hours post-midnight and feel most alert and alive then, and why I claim that it is then that I get my best work done. As I understand it, there are actual “chemicals” — I hate that generic term for more specific biological substances! — which impel a person towards sleep and that these are at their lowest in the morning and constantly building up during the day until for most people, or at least for those whose drive to sleep peaks at around 10 or 11pm or so, the sleep pressure is such that they feel the urge to sleep and usually do so easily around that time. (I think this is modified somewhat by the fact of artificial light and that in fact were we bound by (some would say limited to) the natural cycle of daylight, our “sleep chemicals” might take on another pattern, pushing us to sleep whenever it got dark enough that sleep was our only recourse. Of course, we still don’t really know why we sleep at all, but the fact that there is nighttime, that it is too dark to see in and do anything in, or was before we acquired artificial means to light up the darkness, and that there is nothing to do then except sleep seems to me to be reason enough. Better sleep than fidget! And better sleep than try to venture outside of your warm cave and get yourself killed in the dark…

But as I was saying, I am always sleepy. Or almost always. Sometimes, when my medication is actually helping me, and when I have added to it a strong cup of coffee (often it seems that the coffee is a more effective alerting agent than the methylphenidate, oddly enough, since I can easily sleep through 40mg of the latter but not through the 150mg of caffeine in a cup of coffee …) I feel somewhat able to get things done. No, I can’t read, or not very often. Reading more than a few pages is usually beyond my concentrating abilities. This is partly because my eyes, with their strange tendency to conflate inability with lack of desire, reject it and partly because reading simply overwhelms all the powers of any alerting agent to keep me awake: To sit down and read and stay awake seems literally impossible. However, years back, in the 1990s and early 2000s, when I took Zyprexa 35mg, reading was massively important to me, more important to me than any other activity I could imagine (due to the Zyprexa having wakened me to the world…). Dr O, who became my sleep specialist as well as my psychiatrist in 2000 and so was able to monitor both my schizophrenia as well as my narcolepsy, was aware of this and treated it with both methyphenidate SR and ER and Provigil and sometimes Adderall as well. These in varying combinations plus the Zyprexa were at least helpful. I remained sleepy, and continued to suffer from hypnogogic/hypnopompic hallucinations — that is, REM intrusions into waking states, or dreaming while awake, and not just when getting up or falling asleep but in the middle of the day — but I was alert enough to read as much as I wanted to, at least during part of the day.

Now, however, my eyes refuse to let me read, even when it might be possible. And when I do  at least try to read, that is, when other activities such as writing are possible and so reading ought to be as well, I find myself falling asleep because of eye strain and fatigue. Talk about a vicious circle. Yet I will work around both of those in order to write! Weird…Even now I can barely see what I am writing, have to contort myself to “get around” the confusion of dancing and shimmering letters, but I continue to write nonetheless, as my eyes do not refuse to do that. Yet they do and would refuse to read someone else’s blog, especially anything longer than a short paragraph, if that.

Sleep sleep sleep and that well known “ravell’d sleeve of care” as in Shakespeare’s MACBETH:

“…Sleep that knits up the ravell’d sleeve of care, The death of each day’s life, sore labour’s bath, Balm of hurt minds, great nature’s second course, Chief nourisher in life’s feast….”

Balm of hurt minds…Indeed, yet I did not sleep well last night. I was both too upset and riled, and too raveled or would we say, unraveled by the things that I felt I had to do to please too many people. I didn’t, I thought, have the right, or the wherewithal to say No to anyone,  I didn’t know how, I didn’t feel, after I had said “Yes, I will, I would, I can, I should,” to then say, essentially, “F—K off,” and “No, I won’t after all.” Well, of course, to say, “No, I can’t,” is not necessarily to say, “F—k off!” to any one, but I was feeling that way. I felt so angry but also so terribly tired and so overwhelmed and crazed by people demanding of me more than I could cope with and then just that one inch more that I thought I would die…and then, and then…it was basically “F—k you, everyone! I cannot take it anymore. I quit!”

Luckily I didn’t tell anyone that, not exactly, and not in the middle of the night.  I didn’t even call Lee and tell him that I felt overwhelmed and unable to take it any longer.  I cried, yes,. And I wrote emails to people I could scream to, in  despair without jeopardizing our friendships or my freedom…I always have to worry about that! (*Nor did I admit to anyone  — except one pen-friend — that I also feel, frankly, obese, so obese that I want to —but I won’t say it, won’t say it, won’t say it…All I will say is that I hate myself and that I will never again take either the Zyprexa or 30mg of Abilify. If I had known that the additional 15mg of Abilify would make me gain 20 pounds in 6 months I never would have agreed to stay on it after the hospital stay last spring. If I hadn’t taken it after I got out, I would not be in this horrible situation now. No one, least of all the visiting nurse who presses both drugs on me in the name of keeping me sane (hah), seems to understand  how insane it makes me) But I have digressed yet again…

I was speaking of how tired and over-committed I was,  and how I felt that I could not say, “No, I cannot do this, that or the other” to anyone, most especially after I had made a commitment, however unwilling– or even unwittingly. That is not to say that I did not want to do all of what I had to do, only that  I had signed up for too much and now had to draw back and decide what my priorities were. Even those I wanted to do, I had to choose among as well. But I wasn’t calm enough to think this last night, let alone to do such choosing.

Instead, though I had taken my Xyrem, the sleep medicine for narcolepsy that usually zonks me right out, and had taken it early, I tossed and struggled with the green microfiber cushions of my recliner for about an hour, trying to find  a tunnel into sleep, so that I could forget my woes for a while. But it was, as you can imagine, useless, even with the Xyrem. So instead of fighting the green any longer, and tearing holes in it, I turned the lights back on and pulled the lever and sat up again. To my small satisfaction, I discovered that I had in fact slept a  little in my tossing, and that it was 3 a.m. and not just midnight. Good, so I was not going to be up the entire night. At least I could say that I’d slept a few hours…But I was wide awake now. So instead of brooding the more, I decided to…well, there were some poetry contests with December 31 deadlines, so I started the long process of finding poems and making duplicate copies and such to enter those…and it was in doing that, and cleaning the apartment, that the night finally came to an end…

Today, of course, I suffered from extreme sleepiness, until now, when it is nearly midnight, and I am awake again. Go figger.