I believe this link should bring you to an article once published in the Hartford Courant, and then linked to by schizophrenia.com (a now defunct site, with some still working links). It was written in 2003 about me and my sister and family, and may be instructive...Things are much better now, needless to say. Also, partly as a result of this article, my father and I have reconciled.
http://www.schizophrenia.com/stories/twins.htm
PLEASE NOTE: if it takes you to a page of poetry that the poems were first drafts and none of them are in the same condition as they are now when finished...
Thursday, March 12, 2009
Wednesday, March 11, 2009
Schizophrenia and Sleep: A Miracle drug?
There's a story here that I haven't told completely because I haven't wanted to muddy the waters or get people's hopes up for a drug that might help one person in a million. |But my esteemed psychiatrist and sleep specialist, Dr O, thinks I shouldn't be so reticent, that I should explain what happened in full, because research is still being done and who's to say what might be helpful or not in other cases of schizophrenia. So here, forthwith, is a fuller story of how I recovered.
I've said in my speeches, if you've heard them, that the first step, beyond choosing life over death, was vowing to take every medication I was prescribed as prescribed, without fail, until the doctor's orders changed. That certainly stabilized me to the point where I stayed out of the hospital, though I didn't feel particularly well. Then, I finally agreed to try a drug Dr O had been pushing me to take for a year. Xyrem, a night-time drug for narcolepsy, is meant to regulate sleep in narcolepsy, help the patient attain slow wave sleep, and thereby enable her to be more awake during the day. If I could be awake and alert during the day, the theory was, the spells of waking dreaming would happen less often, I would need fewer stimulants, and the sleep attacks would cease...among other things. ( I realize that I haven't actually described these things, and I will have to go backwards at some point and do so, but trust me, they have been a big problem...)
Xyrem is not a drug without a difficult past. Once known as the "date rape drug" it has faced bitter controversy, even being discussed in congress about whether it had therapeutic uses. Luckily, testimony by persons with narcolepsy convinced the powers that be to save the drug from being banned outright. So it is now available, under very special circumstances, and with careful supervision, from one central pharmacy in Michigan or Illinois, as an orphan drug, schedule III or IV.
It is however a difficult drug to take, and I admit that no matter how quickly I get it down, I dread it each time. It's a liquid, just a tiny amount, maybe 6ml, mixed with water or grape juice and taken just before bed. It's foul tasting -- actually on the salty side -- so you have to dilute it well, but not more than they say. Then, the worst part, you must pour a second dose, put it on your nightside table, set an alarm for 3-4 hours later, wake and take a second dose, no matter how deeply asleep you already were!
When I first started taking it, falling asleep terrified me, because I tumbled into blackness after twenty minutes, and the plummeting off that cliff into unconsciousness was precisely what had always made me reluctant to sleep at night. I had a hard time falling asleep for week, feeling the bed rock beneath me, my body trembling and my ears roar, and all sorts of unnerving bodily sensations that turned out to be more fear-related than anything else. After about a month, though, I was able to take it without trouble, except for the middle of the night awakening, which bedevils me to this day...
However, the effects can be felt within two weeks if you're lucky, though it takes months for some, and for me a miraclous 12 days. My improvements had nothing whatsoever to do with narcolepsy though. Improvement in that sphere did take months to appear. What improved so quickly were the last symptoms of my schizophrenia!
It was astounding but the last little but still important symptoms just fell away: I began to look at Dr O and finally knew what she and certain other people looked like; I began to gradually, shade by shade beome desensitized to the color red, which had terrorized me for decades; when the evening visiting nurse asked me if had been hearing any voices that day, I could honestly answer, No. I felt little paranoia, had no trouble distinguishing reality from non-reality, and for the first time began to understand why my delusions were delusions and that the voices were only false perceptions inside my head.
Since we hadn't started or stopped or changed any other drug in a long time, it seemed clear that Xyrem was responsible for this miracle. I really don't have any idea if it would work for anyone else. Dialysis worked for Carol North, a former schizophrenic turned psychiatrist, who wrote WELCOME SILENCE. Since then, according to her, it has worked for no one else and she does not recommend it for any of her patients. So I might be the ONLY one that Xyrem could help. Nevertheless, a nagging part of me reminds me that psychosis is often described as a waking nightmare, and perhaps this is for a reason. If Xyrem helped this go away, literally, for me, (it is part of narcolepsy), who's to say what it would do in others with schizophrenia...
In 2009, a couple of years after I wrote most of the above, I would like to add the following: when I get my 8 hours of good Xyrem-mediated rest at night, with the proper proportion of slow wave delta sleep, I feel like a million dollars the following day. That does not, however, keep all my symptoms at bay, nor does it enable me to cope with everything as well as I wish I could...My apartment seems to "fall apart" and it is so hard to get it together by myself, so Lynnie pays my friend Jo to help me every two weeks (she is also a professional housekeeper) lest it get completely out of hand. My stamina is still limited, so I have to keep a careful watch on how much I commit myself to each day, and in a sense how far from home I go (lest I can't get back before I get exhausted).
Exhaustion is my biggest fear...that and sleepiness. I am so afraid that I will end up somewhere, as I have, and suddenly find myself overcome with sleepiness, and have nowhere to fall asleep for a half hour. That feeling is such agony, and indeed can be overpowering. What then? is my worst nightmare...And the outcome has sometimes been negative to the max. I do my best to take my medication both at night and on time during the day to avoid getting sleepy when I can least afford it. ( I'm always sleepy at 11am, and usually sometime between 3-6pm) I have my cell phone set every day at 11am, but too often I ignore it or find myself somewhere too incovenient to stop and take a pill, to my great detriment later when I find myself suddenly drowsy while driving, or feeling a sleep attack coming on while visiting Joe in the hospital...
Nevertheless, Xyrem has been a miracle drug for my schizophrenia (Lyme-induced or not). First of all, the other drug cocktail apparently treated my more florid positive symptoms, but according to my twin, a psychiatrist, the Xyrem treated the negative ones, made me seem normal: all the things I could do truly did knit together. She didn't know I was on it, but when I appeared at her door after taking it for about a month, she opened the door, took one look at me, stepped back, and said, "Oh. My. God." Then she rcovered a bit, "You look wonderful, Pammy, normal." She says I looked her square in the eye, was wearing something colorful for the first time in decades, had curled my hair and was even wearing make-up like I actually cared how I looked, and she couldn't believe it. She said my walk was almost normal, that I was less awkward in my body and so forth. She felt like she had her twin back.
I've said in my speeches, if you've heard them, that the first step, beyond choosing life over death, was vowing to take every medication I was prescribed as prescribed, without fail, until the doctor's orders changed. That certainly stabilized me to the point where I stayed out of the hospital, though I didn't feel particularly well. Then, I finally agreed to try a drug Dr O had been pushing me to take for a year. Xyrem, a night-time drug for narcolepsy, is meant to regulate sleep in narcolepsy, help the patient attain slow wave sleep, and thereby enable her to be more awake during the day. If I could be awake and alert during the day, the theory was, the spells of waking dreaming would happen less often, I would need fewer stimulants, and the sleep attacks would cease...among other things. ( I realize that I haven't actually described these things, and I will have to go backwards at some point and do so, but trust me, they have been a big problem...)
Xyrem is not a drug without a difficult past. Once known as the "date rape drug" it has faced bitter controversy, even being discussed in congress about whether it had therapeutic uses. Luckily, testimony by persons with narcolepsy convinced the powers that be to save the drug from being banned outright. So it is now available, under very special circumstances, and with careful supervision, from one central pharmacy in Michigan or Illinois, as an orphan drug, schedule III or IV.
It is however a difficult drug to take, and I admit that no matter how quickly I get it down, I dread it each time. It's a liquid, just a tiny amount, maybe 6ml, mixed with water or grape juice and taken just before bed. It's foul tasting -- actually on the salty side -- so you have to dilute it well, but not more than they say. Then, the worst part, you must pour a second dose, put it on your nightside table, set an alarm for 3-4 hours later, wake and take a second dose, no matter how deeply asleep you already were!
When I first started taking it, falling asleep terrified me, because I tumbled into blackness after twenty minutes, and the plummeting off that cliff into unconsciousness was precisely what had always made me reluctant to sleep at night. I had a hard time falling asleep for week, feeling the bed rock beneath me, my body trembling and my ears roar, and all sorts of unnerving bodily sensations that turned out to be more fear-related than anything else. After about a month, though, I was able to take it without trouble, except for the middle of the night awakening, which bedevils me to this day...
However, the effects can be felt within two weeks if you're lucky, though it takes months for some, and for me a miraclous 12 days. My improvements had nothing whatsoever to do with narcolepsy though. Improvement in that sphere did take months to appear. What improved so quickly were the last symptoms of my schizophrenia!
It was astounding but the last little but still important symptoms just fell away: I began to look at Dr O and finally knew what she and certain other people looked like; I began to gradually, shade by shade beome desensitized to the color red, which had terrorized me for decades; when the evening visiting nurse asked me if had been hearing any voices that day, I could honestly answer, No. I felt little paranoia, had no trouble distinguishing reality from non-reality, and for the first time began to understand why my delusions were delusions and that the voices were only false perceptions inside my head.
Since we hadn't started or stopped or changed any other drug in a long time, it seemed clear that Xyrem was responsible for this miracle. I really don't have any idea if it would work for anyone else. Dialysis worked for Carol North, a former schizophrenic turned psychiatrist, who wrote WELCOME SILENCE. Since then, according to her, it has worked for no one else and she does not recommend it for any of her patients. So I might be the ONLY one that Xyrem could help. Nevertheless, a nagging part of me reminds me that psychosis is often described as a waking nightmare, and perhaps this is for a reason. If Xyrem helped this go away, literally, for me, (it is part of narcolepsy), who's to say what it would do in others with schizophrenia...
In 2009, a couple of years after I wrote most of the above, I would like to add the following: when I get my 8 hours of good Xyrem-mediated rest at night, with the proper proportion of slow wave delta sleep, I feel like a million dollars the following day. That does not, however, keep all my symptoms at bay, nor does it enable me to cope with everything as well as I wish I could...My apartment seems to "fall apart" and it is so hard to get it together by myself, so Lynnie pays my friend Jo to help me every two weeks (she is also a professional housekeeper) lest it get completely out of hand. My stamina is still limited, so I have to keep a careful watch on how much I commit myself to each day, and in a sense how far from home I go (lest I can't get back before I get exhausted).
Exhaustion is my biggest fear...that and sleepiness. I am so afraid that I will end up somewhere, as I have, and suddenly find myself overcome with sleepiness, and have nowhere to fall asleep for a half hour. That feeling is such agony, and indeed can be overpowering. What then? is my worst nightmare...And the outcome has sometimes been negative to the max. I do my best to take my medication both at night and on time during the day to avoid getting sleepy when I can least afford it. ( I'm always sleepy at 11am, and usually sometime between 3-6pm) I have my cell phone set every day at 11am, but too often I ignore it or find myself somewhere too incovenient to stop and take a pill, to my great detriment later when I find myself suddenly drowsy while driving, or feeling a sleep attack coming on while visiting Joe in the hospital...
Nevertheless, Xyrem has been a miracle drug for my schizophrenia (Lyme-induced or not). First of all, the other drug cocktail apparently treated my more florid positive symptoms, but according to my twin, a psychiatrist, the Xyrem treated the negative ones, made me seem normal: all the things I could do truly did knit together. She didn't know I was on it, but when I appeared at her door after taking it for about a month, she opened the door, took one look at me, stepped back, and said, "Oh. My. God." Then she rcovered a bit, "You look wonderful, Pammy, normal." She says I looked her square in the eye, was wearing something colorful for the first time in decades, had curled my hair and was even wearing make-up like I actually cared how I looked, and she couldn't believe it. She said my walk was almost normal, that I was less awkward in my body and so forth. She felt like she had her twin back.
Wednesday, March 4, 2009
Wildflowers On the Road to Damascus: A little Essay
Thirty years ago, I took the natural history course purely for exercise. I figured, what better way to stay in shape than to get credit for it? At the time, I couldn't tell a maple from an oak, let alone one old weed from another, and it wouldn't be easy. But just to keep off the flab would be a benefit in its own right. Since the prospectus promised daily field trips, no mention of love or awe or wonder, the last thing I expected was a miracle.
Showing up for the first day's trip, I wore old tennis shoes, of the thin-canvas Keds variety. I had no idea L.L. Bean's half-rubber hiking boots were de rigueur for a course of this kind. What god-awful-ugly shoes just to walk in the woods! I thought in horror. Right then, I realized I'd made a huge mistake and it was too late to change my mind -- I'd have to stick it out for the whole semester. I knew for sure I was going to be more miserable getting exercise than I ever would have with my thighs turning to mush safe in the college library.
The teacher, Miss G, took off stomping down the path and we tramped on after her. I was last, straggling behind, half-hoping to get lost so at least I could head back to civilization. Before we'd gotten far, she halted, peering intently at something near her feet. She waited for us to catch up and gather round her, then pointed at a weed. "Heal-all. Prunella vulgaris," she announced sternly and without passion. "Vulgaris means 'common.' Learn both names, genus and species. Be forewarned, 'Heal-all' by itself will not be an adequate answer on your quizzes."
She stepped aside so we could take a better look. As instructed, one by one the class dutifully wrote down a description and the two names weíd been given. I was still at the back, waiting my turn without the least enthusiasm let alone the anticipation of what, in those days, we called a mind-blowing experience.
"Come on, now, don't be shy. Step up and look for yourself," Miss G scolded me, pushing at my elbow to propel me closer.
Finally the clump of students cleared out and I had a better view. For some reason, I found myself actually kneeling in front of the weed to look at it close up. Then it happened. As if the proverbial light bulb flashed on over my head, I understood what Miss G meant when sheíd said: Weeds are only wildflowers growing where they aren't wanted. Prunella, I know now, was no more than a common mint, found in poorly manicured lawns or waste ground. Yet, with its conical head of iridescent purple-lipped flowers and its square stem ñ on impulse, I'd reached out to touch it and discovered an amazing fact: the stem wasnít round! Heal-all was the single most beautiful thing I'd ever seen. The world went still--there was only the flower and the realization I'd fallen in love.
Since one of my other courses concerned the history of early Christianity, I knew immediately what had happened. Like Paul on the road to Damascus, I'd been struck by unexpected lightning and converted. I put away my notebook, knowing I wouldn't need to write down a word, knowing I'd never forget "common Prunella" as long as I lived.
There were many other miracles in my life after that, but none came close to the thunderbolt that knocked me flat that afternoon when I saw, truly saw, that homely little mint for the first time. "Sedges have edges but rushes are round and grasses have nodes where willows abound." Yes, I learned such mnemonics, which helped me as much as the next person when a plant was hard to identify. But I discovered in myself an amazing feel for botany that was like sunken treasure thousands of feet beneath the ocean. Once I knew it was there, I had merely to plumb the depths, more or less subconsciously, and gold would magically appear.
I went walking in the woods every chance I got and carried Peterson's guides with me even into town, checking out the most humble and inconspicuous snippet of green that poked through the sidewalk cracks. The first time I came out with a certain plant's genus and species before Miss G told the class what we were seeing, she looked at me oddly. I began repeating this performance until once she even allowed me to argue her into changing her classification of a tricky species. If I still hung back behind the group as we walked, it was no longer from reluctance. I was simply too caught up in looking at each tree to keep up the pace.
By December, as the semester was coming to a close, Miss G had begun using me as her unofficial assistant, asking my opinion whenever there was a question as to what was before us. Oh, I confess, I never did get the knack of birds--it was the trees and wildflowers that stole my heart entire.
At the end of the semester, we received course evaluations in lieu of letter grades. I opened mine eagerly, expecting praise. Instead, Miss G was terse and unenthusiastic: "Pamela faithfully attended every field trip, but for most of the course she failed to share her insights and established expertise with the rest of the class." End quote. "Failed to share her established expertise"? What was she talking about? Did she think I'd already known everything she taught us? How could she not understand what she'd done for me, introducing me to little Prunella, how I'd learned everything I knew after that moment, not before?
It was the worst evaluation I'd ever been given, the injustice of which struck me to the marrow. I went to her office to explain and found a sign on her door saying she'd been called away on a family emergency and would not be returning until the next semester. But I wasn't returning for the second semester. I was transferring back to my original school.
I caught my ride home, spending four hours crammed into the back of an old Volkswagen with three other students, wordless with indignation that reverberated in my mind. How could she think such a thing? I couldn't stop writing and rewriting a letter of protest in my head as the highway flowed endlessly beneath us.
I did write the letter, finally, explaining all she'd awoken in me, emphasizing my new-found joy and amazement. At the end of March I got a reply, but no apology or hint that she understood her misunderstanding. Not even appreciation for my gratitude towards her and what her course had done for me. Just a brisk, no-nonsense note, little better than a form letter. I had the impression that she didn't quite remember who I was, that I was just another faceless student writing to her about a natural history course she'd taught perhaps forty times in her long career as a teacher.
Whether she knew who I was or even recognized what she'd done for me mattered little in the end. What did matter was that when I met homely little Prunella I discovered the whole world in a common weed and it changed my life.
Showing up for the first day's trip, I wore old tennis shoes, of the thin-canvas Keds variety. I had no idea L.L. Bean's half-rubber hiking boots were de rigueur for a course of this kind. What god-awful-ugly shoes just to walk in the woods! I thought in horror. Right then, I realized I'd made a huge mistake and it was too late to change my mind -- I'd have to stick it out for the whole semester. I knew for sure I was going to be more miserable getting exercise than I ever would have with my thighs turning to mush safe in the college library.
The teacher, Miss G, took off stomping down the path and we tramped on after her. I was last, straggling behind, half-hoping to get lost so at least I could head back to civilization. Before we'd gotten far, she halted, peering intently at something near her feet. She waited for us to catch up and gather round her, then pointed at a weed. "Heal-all. Prunella vulgaris," she announced sternly and without passion. "Vulgaris means 'common.' Learn both names, genus and species. Be forewarned, 'Heal-all' by itself will not be an adequate answer on your quizzes."
She stepped aside so we could take a better look. As instructed, one by one the class dutifully wrote down a description and the two names weíd been given. I was still at the back, waiting my turn without the least enthusiasm let alone the anticipation of what, in those days, we called a mind-blowing experience.
"Come on, now, don't be shy. Step up and look for yourself," Miss G scolded me, pushing at my elbow to propel me closer.
Finally the clump of students cleared out and I had a better view. For some reason, I found myself actually kneeling in front of the weed to look at it close up. Then it happened. As if the proverbial light bulb flashed on over my head, I understood what Miss G meant when sheíd said: Weeds are only wildflowers growing where they aren't wanted. Prunella, I know now, was no more than a common mint, found in poorly manicured lawns or waste ground. Yet, with its conical head of iridescent purple-lipped flowers and its square stem ñ on impulse, I'd reached out to touch it and discovered an amazing fact: the stem wasnít round! Heal-all was the single most beautiful thing I'd ever seen. The world went still--there was only the flower and the realization I'd fallen in love.
Since one of my other courses concerned the history of early Christianity, I knew immediately what had happened. Like Paul on the road to Damascus, I'd been struck by unexpected lightning and converted. I put away my notebook, knowing I wouldn't need to write down a word, knowing I'd never forget "common Prunella" as long as I lived.
There were many other miracles in my life after that, but none came close to the thunderbolt that knocked me flat that afternoon when I saw, truly saw, that homely little mint for the first time. "Sedges have edges but rushes are round and grasses have nodes where willows abound." Yes, I learned such mnemonics, which helped me as much as the next person when a plant was hard to identify. But I discovered in myself an amazing feel for botany that was like sunken treasure thousands of feet beneath the ocean. Once I knew it was there, I had merely to plumb the depths, more or less subconsciously, and gold would magically appear.
I went walking in the woods every chance I got and carried Peterson's guides with me even into town, checking out the most humble and inconspicuous snippet of green that poked through the sidewalk cracks. The first time I came out with a certain plant's genus and species before Miss G told the class what we were seeing, she looked at me oddly. I began repeating this performance until once she even allowed me to argue her into changing her classification of a tricky species. If I still hung back behind the group as we walked, it was no longer from reluctance. I was simply too caught up in looking at each tree to keep up the pace.
By December, as the semester was coming to a close, Miss G had begun using me as her unofficial assistant, asking my opinion whenever there was a question as to what was before us. Oh, I confess, I never did get the knack of birds--it was the trees and wildflowers that stole my heart entire.
At the end of the semester, we received course evaluations in lieu of letter grades. I opened mine eagerly, expecting praise. Instead, Miss G was terse and unenthusiastic: "Pamela faithfully attended every field trip, but for most of the course she failed to share her insights and established expertise with the rest of the class." End quote. "Failed to share her established expertise"? What was she talking about? Did she think I'd already known everything she taught us? How could she not understand what she'd done for me, introducing me to little Prunella, how I'd learned everything I knew after that moment, not before?
It was the worst evaluation I'd ever been given, the injustice of which struck me to the marrow. I went to her office to explain and found a sign on her door saying she'd been called away on a family emergency and would not be returning until the next semester. But I wasn't returning for the second semester. I was transferring back to my original school.
I caught my ride home, spending four hours crammed into the back of an old Volkswagen with three other students, wordless with indignation that reverberated in my mind. How could she think such a thing? I couldn't stop writing and rewriting a letter of protest in my head as the highway flowed endlessly beneath us.
I did write the letter, finally, explaining all she'd awoken in me, emphasizing my new-found joy and amazement. At the end of March I got a reply, but no apology or hint that she understood her misunderstanding. Not even appreciation for my gratitude towards her and what her course had done for me. Just a brisk, no-nonsense note, little better than a form letter. I had the impression that she didn't quite remember who I was, that I was just another faceless student writing to her about a natural history course she'd taught perhaps forty times in her long career as a teacher.
Whether she knew who I was or even recognized what she'd done for me mattered little in the end. What did matter was that when I met homely little Prunella I discovered the whole world in a common weed and it changed my life.
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