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August 28, 2006

The Reality Test and more

The reality test I described below consisted of challenging a delusion or hallucination by asking someone a question like “Did you say such and such?” or “Did xyz actually happen?” or “Is xyz doing such and such in the walls?” etc then listening to the answer and trusting that the answer is the truth. Until I learned it, and could do it fully, including the trust part, I had had no idea that I was living in something other than consensual reality. Even though people told me again and again I was paranoid and delusional, I figured they were using such words just to insult me because they didn’t like me, because they had hated me from the minute they met me anyway. But at the instant that that horrendously frightening delusion dissolved in the light of reality, it became clear to me how much time I’d been spending in a wholly fictional world and how often I’d need to use that reality test: in three words -- all the time.

Lack of insight. That was the fundamental difficulty. I didn’t know that I had a problem. The reality test gave me insight, but it took me a four-week hospitalization to understand how to use it and why. Some people with schizophrenia are fortunate enough never to lack insight; others like me seem to have it, then lose it; have it, then lose it. But we all know some who remain unaware of being ill all their lives. If there were a magic wand I could wave to change this, I would tell you where to find it. I only found insight by using it. Perhaps it is different for each individual. If you or your loved one can’t understand that there is a problem, don’t force it, it will not do any good: one can’t see colors if one’s eyes have no cones. What you can do is find a way to have them agree to take medication anyway -- as a condition of something else more desirable. Knowing that I stayed out of the hospital for 18 months while on all the meds, I decided to force myself to take them and started doing so in the hospital, where I’d been refusing several. I wrote up a contract, signed it along with the charge nurse, and gave it to the staff. It said that if I refused any medication all my writing materials would be confiscated for 24 hours. Since I wrote up to 15 pages in my notebook every day, it was the only threat I knew that had teeth. With that contract in place, the thought of not being able to write so terrified me that I didn’t refuse medication even once.

Of course, there has to be some basic alliance with a person for such a contract. It seems to me to be cruel to arbitrarily impose such a thing without consent, though I tacitly agree with it, I admit, where medication is a matter of life and death, or jail versus staying at home, or in other critical circumstances. I understand that some people with schizophrenia will be horrified by this suggestion, but I’ve been around, done things that I wish I hadn’t done, and know this should have been done to me a lot earlier for my own good. In fact, it was. I have been under court order, in the hospital, to take medications I hated and even to accept ECT. But here in Connecticut we have no mandated out-patient treatment law, and so no one could force me to take medication once I was discharged, to my great detriment. So in and out of the hospital I bounced, on and off the medication about which I was so ambivalent. They should have taken me off Zyprexa and put me on Haldol once and for all. But I loved Zyprexa as much as I hated it, and could never decide to simply give up on it altogether. Until now.

Now I’m on 15mg of Abilify, plus some Haldol and a full dose of Geodon. Three antipsychotics. They seem to work well. I still hate the Haldol, and feel it is still unnecessary. But I take it, supervised by a morning and evening visiting nurse. But with the Abilify and Geodon, boy, what a transformation. They aren’t like Zyprexa, no, my world is not suddenly Imax, or HD compared to the ordinary. I have difficulty reading, for one thing, though I am able to do so and enjoy it for short periods. But I used to struggle to write and found it hard to get over the initial hump that blocked my way.

Now, though, ah, now I write like wild fire. I write and write -- pages a day, in my journal, in email, even here, in my blog. I write more often than I ever did and have to control the urge to write here more often than once a day. I even have to curtail the desire to write every day, lest I not do anything else! But it is a wonderful feeling to be so freed up, to have words surge like a electro-chemical river from my brain down through my fingers and pour out into the world!

So I see how medication can have active benefits now, not just side effects. It helps me want to stay on them, insight or no. It’s what I wish everyone with this illness could see and understand: that their lives could be better, that they could be less confused and frightened, less tormented by voices and visions or terrifying intrusive thoughts that others label delusional, that the world could offer some happiness with other people in it, if they’d but surrender a tiny bit of “freedom” and agree to swallow medicine. Then, I must add, it behooves the doctor, knowing this momentous decision has not been made lightly, to work with the person to find the least uncomfortable most effective regimen, not simply slap on some all-purpose drug or long-acting injection with no regard to the individual taking it.

There has to be an alliance. Let me say this again: there has to be an alliance between the doctor and the patient, and the alliance must be a two-way street. If the doctor wants to trust the patient to take the meds, the patient must be able to trust that the doctor is prescribing the proper medication and is willing to listen to him or her if it proves to be not quite right. If the patient cannot trust the doctor in this, how can he or she learn to trust enough to "get" the reality test? The stakes are high, the stakes are high.

Posted by pamwagg at August 28, 2006 08:42 PM

Comments

Hi Pam,

You're such a trooper. It's good to have you back and writing again.

Kate... welcome. I enjoyed reading you comment to Pam.

Yaya

Posted by: yaya at August 30, 2006 11:47 PM

Hello Pam,

I just finished reading your memoir. Thank you for having the courage and honesty and endurance to write it. It's great. I read it because I am schizophrenic too and I'm trying to read as many memoirs by schizophrenics as I can in order to broaden my insight into this illness. Your book, unlike some others, made me feel protective of your happiness. I was saddened to find that you're not totally recovered, that you just came back from another hospital stay but I was very glad to read yesterday's blog to see that you're getting your own insight back, hopefully for a long time.

I'm 44 and I live in Western New York (though I grew up in N.Y.C.) and I started hearing voices soon after my graduation from Barnard College in 1985. Unlike the rest of my friends who were growing up and moving on, I stayed at home and instead of getting a job I began taking art and photography classes (even a little acting and playwrighting). I had just separated from my long time boyfriend (one of the ones growing up)and spent a lot of time alone. I wrote in a journal regularly, had a couple of brief affairs but didn't seem to be going anywhere. I was not psychotic at the time. No delusions. No paranoia. And the voices were so subtle and unobtrusive that I didn't think of them as unusual. I guess I felt a little blessed because they seemed to help me, to keep me company,more like guardian angels. In 1989 my parents retired to Florida and I moved six hours away to be near my brother. From city to country. My father, who had been a corporate lawyer for a group of advertising companies, had done well financially during the Reagan years (though he intensely disliked the man--my father is a Democrat). Because of this wealth he first bought a cheap house for my brother (who also has had his share of emotional problems) and then a somewhat more expensive house for me. Though my brother lived a couple of miles away, this was the first time I had been alone. I quickly got romantically involved with two inappropriate boys, staying with the second who turned out to be an abusive alcoholic. My experience with him was the most traumatic thing I'd been through till then. I encountered violence,anti-semitism, sexism, racism and addiction in a way that I had never encountered in New York City. I had to go deep into the country to find it and once I did I started sinking along with him. Five and a half years later I finally got away from him and began to start over. Three years after that when I was 36 I became delusional and paranoid. The voices, who had been my unobtrusive friends, told me to send a tape of me reading a poem, singing a few songs and talking to a rock star. I did and after that the voices wove a delusion for me, a romantic delusion that turned into a nightmare. Three years and three psychotic breaks later (though only one over night stay at a hospital, voluntary)I began to take the anti-psychotic medicine Zyprexa nightly with the psychiatrist gradually increasing the dose over excruciating months of near suicidal depression. The depression was caused by somehow coming out of my delusional state (and paranoia). I was no longer some special person. And, of course, I got fat. I was taking the highest dose of the Zyprexa and a drug called Provigil to counteract the excessive sleepiness and I began to come out of the depression. I still had voices but gradually they began to become more muted, less in my face 24/7. I managed to get a B.F.A. in painting and photography (by the end I just wanted to graduate though most of my grades were good; I found it uncomfortable to work around others). Of course, there's a lot more to the story (true for me and everyone) but I just wanted to introduce myself to you because I hope we can become online friends. Feel free to email me any time.

Kate


Posted by: Kate K. at August 29, 2006 04:56 PM

Congratulations on your new insight. Spoken like a highly rational person and articulated beautifully. I am happy for you. Better late than never.

Posted by: Beth at August 29, 2006 10:50 AM

Yes, the stakes are high indeed.
This is why those carpenters must always raise the roofbeams high. Pamela Marget Spiro Wagner will always cometh, and she is as lofty as a human being has the ability to be. As Josh Groben might sing to you alone,"You raise me up so I can climb on mountains-You raise me up to all that I can be."
With unconditional love and respect,Paula

Posted by: Paula Kirkpatrick at August 28, 2006 09:18 PM

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