Pretenders

Someone just made a comment to me on Schiz.com that he wondered if I really do have schizophrenia because I seem too normal for their website. My first response was to bristle…to go and get all records from 30+ hospitals (or I would if I could just recall the names and places of them all. lol) and to get affidavits from the probably hundreds of doctors who have treated and diagnosed me as “Chronic Paranoid Schizophrenic” or as “Schizoaffective, –depressive type, heavy on the SZ, and lighter on the Bipolar Disorder which is the other half that diagnosis (henceforth: Dx) At first I wanted to tell him of the years spent in psych hospitals and of the months spent in restraints….of abject poverty and hopelessness….Just to SHOW him and to defend my right to use the forum at Sz.com….

I know that people have their doubts about my Dx….I am, when I’m not sick, very high functioning–I can write well and know ‘big” words. So once I ‘d regained overt stability after the birth of my daughter, I’d pretty much convinced myself that the previous 15 years were an aberrant bad dream. Then four years ago, at the age of 44, the bottom fell out of my world….and I catapulted into three of the most bizarre years, filled with physical and mental illness so severe that I spent large portions of those three years, in the hospital. Somewhere during that time, I began to wonder if maybe something WAS wrong after all. (ya think?)… And wasn’t until I’d taken a picture of myself….dirty t-shirt, unwashed hair, 220 pounds, with the deadest, most psychotic eyes I’d ever seen…and realized that I’d not left my room, except to go to the bathroom, once in several weeks, that I began to realize that, “shoot–maybe I do have sz!” I’d just sat in my recliner, often in the dark, staring at nothing…being so unmotivated and listless and with my head full of crazy thoughts. ..or just filled with nothing. I then realized that I was having severe problems with what are called “negative symptoms”….symptoms like anhendonia (an inability to take pleasure in anything) and lack of motivation, poverty of speech and thought, reduction in creativity and the weight gain was due to the psychotropic drugs I’d been “encouraged” to take. And in fact my years and years of denial were, in themselves, a symptom of SZ.

I won’t bore you with the story of my illness…any more than that. As I told the “doubter” on Sz.com, I don’t have to or care to defend my diagnosis to him. From his mouth to God’s ear actually. I wish I WEREN’T sick with the dream sucking disease that has destroyed my life which once held such promise…and left me sitting here in this cursed room…wearing the same clothes I wore yesterday and slept in last night. And I was just thinking: WHO IN THEIR RIGHT MIND WOULD PRETEND TO HAVE SZ?? Who would even pretend to be mentally ill?? If I were going to live a life of pretense; I’d pretend to be someone famous or important…not some smelly, person with SZ sitting here for weeks on end.

And yet, I know there ARE pretenders….people who take a mixed bag of dramatic symptoms and get OFF on the attention it brings them. My daughter has a friend like this….and my husband says that it is in itself, a psychiatric disorder “Histrionic Personality Type. I don’t understand the possible gains of that. I mean, maybe if you’re in High School and needing lots of negative attention…but really NOT as an adult. I had an IQ in the 160 range, back in the days prior to SZ. And I think this has allowed me to stay “ahead of the game, at least as far as where the people at SZ.com find themselves. It helps me to outsmart some of my symptoms and it masks the increasing deficit of cognitive ability with which I am struggling.

Also I tend not to express myself in writing when I’m not feeling well–(other than an occasional journal entry…which, more often than not, is so incoherent it’s unreadable). If I KNOW I’m not doing well, then, I get embarrassed and don’t post. If I DON’T realize I’m sick; then I’m off doing other things…like driving cross country on some adventure….or lying on my bed in a dark room, staring at the ceiling and conversing with the voices in my head.

so anyway.

I don’t have a great love for pretenders. And as I said, I have better things to pretend to be than schizophrenic.

Good Times

Just looking at my former posts....funny how I can sound so "together' and be so NOT. Took me a while to find that period...it helps when your fingers are on the right "home" keys. In tonight's marathon (or is it "last night" now?), I spent the first half of the night listening to and downloading on a new mp3 player, music from my high school years. When someone tells you , "Enjoy this time....it will be the best years of your life" - you should really listen. And if that becomes true of your high school years...well that's just sad. ...to have your whole life as a denouement is.....sad.

I was thinking about those years as I listened to the music...The music was HAPPY...driving beats, sounding like freedom and optimism...because we were ALL going to be a smashing success you know. Especially me. And that feeling became weaker and more uncertain as every month passed in my 18th year and onward. The rest of my friends went on to "make it big"....Doctors...degrees from Harvard and Yale and Princeton...Lawyers, college professors. Every one of them.
I took a different track. I became.......................psychotic at times....and sick with schizophrenia.

I did have two other good times in my life. The first was after the birth of our daughter...My husband was never home, trying to get a new business off the ground... so it was just me taking care of that little screaming bundle. She had terrible colic. But I really think that this helped to bond us because I was the only one who could comfort her. And I was the only one she would allow to hold her. We had moved to a side by side duplex/townhouse near the Hudson River in upstate NY when the baby was just one week old (yeah...don't ask me how I survived that!).

My days and nights fell into a rhythm that comforted me as much as it did my daughter. Nights we paced the floor , me holding her in with her belly on my forearm and her head in my hand...It was her favorite position. Finally we would drop in the wee hours of the morning, exhausted on the couch or my bed....the baby on my tummy and sleep for a few brief hours. Mornings was bathing ,feeding and dressing. Then we would bundle up if needed and I put her in her carriage and we would walk....ALL OVER the neighborhood and down along the river banks....Usually with her raising such a ruckus that I would have to take her home...as even the neighbors commented on her amazing lungs!

And then...I leaned forward on the couch and felt it...the pain that was so familiar...The pain of a disc blowing. (I'd had major back surgery at the age of 27...and I was now 30). It turned out that two discs were shot...most likely due to a really difficult birthing of my little one. So it was again off to have surgery...My daughter was 4 months old...and that was the end of my nice time. The surgery went bad. I would be in the hospital for close to 4 months and come home wearing a brace on my leg....and in unrelenting indescribably pain...which would last----the rest of my life.

I had another (brief) time of happiness. I had just worked my way out of a wheelchair after being in it for two years due to damage to my muscles from steroids for asthma. And at the end of that season of being homebound (my daughter was now in 5th grade I believe), I began once more to draw and paint...having been away from it for a number of years. And after my slow recovery I was to join the Arts Commission in that town and had a solo show of my work and spent the next two years or more, traveling to paint and draw and to show and sell my work. I was quite successful at it...although, looking at that work now, I don't see why...There are only a few worth keeping. But people liked them. And I was happy.

not now.
I'm not happy now.

Then I had the worst psychotic episode of my life that lasted for three or four years. The end of that time was a year ago.
And nothing has been the same since.

...so if you are and you are in a "Good Place"...enjoy it for all it's worth....

The State of Psychiatric Treatment: Then and Now

The following is an article that was posted on the schizophrenia.com site's forum and then will follow some of the discussion that took place. What is your take on this question?

A skeptical view of ‘progress’ in psychiatry Henry A. Nasrallah, MD Editor-in-Chief “Current Psychiatry” Editorial from June 2011 issue http://www.currentpsychiatry.com/pdf/1006/1006CP_Editorial.pdf Everybody loves progress. People feel uplifted by the notion of progress, by the dynamic feeling it evokes of “moving forward,” of achieving new milestones and reaching new heights. Progress implies improvement in the human condition and an upgrade in quality of life. In medical disciplines such as psychiatry, it connotes less suffering, better treatments, more hope, improved social and vocational functioning, and full restoration of wellness. But let’s be realistic. Overall evolution of psychiatry is not as “progressive” as we like to believe. Yes, there are thrilling breakthroughs in basic neuroscience research and understanding brain structure and function at the cellular and molecular levels. However, in many other areas of psychiatric practice, I feel we have moved backward since I began my career 3 decades ago. Egress, not progress, appears to be the state of psychiatry. In a tango-like fashion, psychiatry seems to take 1 step forward on 1 level (science and discovery) and 2 steps back on another level (practice realities). As an optimistic person, it pains me to admit that we have moved backward in several aspects of psychiatry: • The discovery of chlorpromazine, the first antipsychotic, was a miraculous event for our field, but was it “progress” for our patients? Their symptoms improved partially but they developed serious side effects and remained functionally disabled throughout their lives. Patients were “freed” from locked hospital wards, then hurled into a poorly prepared and under-resourced community mental health care system, resulting in revolving door relapses, extensive drug abuse, rampant stigma, abject poverty, physical neglect, early death, homelessness, and for many psychiatric patients, incarceration in jails and prisons, an environment more restrictive than the reviled asylums. Our patients who were medically ill individuals cared for by doctors, nurses, and other health professionals are now lowly felons. It seems that those unfortunate enough to suffer from a psychotic brain disorder are destined to be further punished for it, a great injustice in the name of “progress.” • Insurance hassles for serious mental illness did not exist in the asylum era. If an individual developed a psychotic disorder, he or she was admitted to the nearest state hospital without hesitation and provided medical and psychosocial care, even if the stay lasted months or years. Now, the same patient cannot afford psychiatric hospitalization even if he or she has “health insurance” (a euphemism for “restricted health coverage”). Equality of psychiatric disorders with other medical and surgical disorders remains a farce, and the lack of parity for mental illness has deprived millions of patients from adequate care. How many victims of mental illness have suffered or died in the name of “progress” in the health insurance industry? • Who is the “genius” who stipulated that a psychotic, bipolar, suicidal, or homicidal patient could be effectively treated after 3 to 4 days of hospitalization? How did patients become widgets on an assembly line? Medical students and residents on inpatient wards no longer have the rewarding experience or witnessing full improvement in their patients. Is it progress when a patient with schizophrenia or severe depression is discharged after barely 30% to 40% improvement in symptoms? No wonder relapse, suicide, and homicide rates are very high in the 3 weeks after discharge. Long-term hospitals, the last refuge for severely disabled patients who cannot care for themselves, now are rare. Is that progress? • Why are psychiatrists shackled by more legal constraints than physicians in other medical specialties? Why should lawyers and judges tell us how to practice medicine and who, when, and how to treat? Legal progress sounds like an oxymoron to me. • Why is the public mental health system so broken in every state? Why is it so ineffective, chaotic, underfunded, hard to navigate, and demedicalized? Why have psychiatrists—the traditional leaders in mental health— been marginalized to sign prescriptions instead of being executives and policy-setters for mental illness? Respiratory and physical therapists have important roles but the pulmonologist or the orthopedist runs the clinic. Why is it not so in public psychiatry? This is not progress, but a travesty. • Why is psychiatry now referred to as “behavioral health”? Who decided to fix the name of psychiatric care when the original term is much more comprehensive, factual, and inclusive and uses medical terminology (iatros = “healer” or “medicine”). It is not progress to reduce to “behavior” psychiatric illnesses that involve a broad spectrum of pathologies, including thought disorders, mood disorders, perceptual disorders, cognitive disorders, pain, addictions, and many general medical conditions that manifest with psychiatric signs and symptoms. Redefining psychiatric care with inaccurate terminology certainly is not progress. • Why are pharmaceutical companies, the only source of drug development, abandoning CNS research? Is it because cardiovascular, oncologic, and GI drugs are more profitable and less “challenging” to develop? Is it progress to turn away from the most critical medical frontier, the human brain, and its diseases? At a time when 80% of psychiatric disorders have no approved medication, it is inexcusable to shirk from discovering drugs that trigger hope for recovery for patients with untreatable mental illness. Ogden Nash once wrote: “Progress might have been all right once, but it has gone on too long.” I will add to that for psychiatry, progress isn’t what it used to be --------------------------------------------------------------------

One of the forum's participants responded with the following comment:

...what a depressing article from such an unexpected source. I'm not even sure where to start.

1) I do not believe we would be better back in the "asylum days". I think the abandonment of the asylum was a good thing.
2) Anti-psychotic drugs help people more than the author will admit.
3) I think an insurance system designed to keep you away from being hospitalized for "months to years" is a good thing.
4) The local hospital is designed to cover the crisis a patient is going through. It's not for long term treatment.
5) There are more legal constraints on a psychiatrist because they aren't dealing with visible physical injuries like a broken leg.They're also dealing with incarceration and often treatment against a patent's wishes. People with broken legs don't refuse treatment.

Jeez, I could go on because I disagree with almost ever thing this guy says. It's not that bad out there and people are getting better. Good lord is it better than the days of the asylums.

And here were my thoughts:

I agree with you...asylums aren't the answer....but if it takes a person longer than exactly 30 days to come out of an episode, there should be more options available.... I agree with you that long term hospitalization is not always necessary or desirable. When I was 19 I spent 14 months in a hospital and had, I think, two or three other 6 month long stays. The 14 month one was a waste of taxpayer's money...but actually, both of the 6 month-ers were pretty much necessary....so who's to say what the limit of time spent in hospital should be? There's a difference between receiving treatment and expensive housing. And it is a tough call for the insurance companies to make to determine which is taking place on an individual level. So I believe that rather than struggle with that question and the abuses and insurance fraud that I'm sure took place, they erred on the "safe" side (safe for them, note) and just said 30 days max. Period. And yeah for some people, it sucks. And it puts pressure on social workers etc in the hospitals, often to arrange for living and treatment situations quickly...and I think that because of the difficulty of that, they just don't even really try to do that any more or to get heavily involved with the aftercare plan. And unfortunately, this may have resulted in a greater percentage of homelessness and suicides than would have occurred should adequate plans have been in place. You're right , a lot can be said about it...on both sides of the argument (between long and short term care.) As far as "asylums" : I don't think ANYONE is arguing for that to return....except this article. And as far as medical advances:? I had been treated on EVERY single antidepressant and antipsychotic drug available back in the 80's at unbelievably high doses.....to no avail....The drugs simply weren't available then which would help me. Thank God for the advances in this area....while not ideal, they are a far cry from the misery I was in back then. However I do agree that the term "Behavioral Health" is misleading in a very negative sense. It relegates a serious mental and physical illness to a matter of mere behavior, implying that perhaps all that's needed is a "smack on the hand" or retraining and the problem will resolve or go away. This is a fallacy; and a dangerous one. It will not be until Schizophrenia is seen as a serious brain disease, that funding, research and a cure will be found....Too many people call mental illness "emotional illness" or "emotional problems " and think that it is an equivalent term. No amount of effort, therapy, or rehabilitation is going to cure schizophrenia or reverse it's damage. This is a common misconception and is reiterated by such terms as "behavioral health" and it perpetrates and perpetuates a common public misunderstanding of a devastating illness leading to even greater misery among the population who suffer from it.