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I have joined a writers' group started by a friend of mine, Bill W, also the guy at the biggest Connecticut paper in charge of the Op-Ed page who asked me in 1992 to write a piece on mental illness and health care. This article went on to win first prize that year in the Connecticut Mental Health Media Awards for professional journalists. Bill stayed in touch with me over the years and has been a great source of support ever since then. He retired from the newspaper last year and now is very active in the local volunteer community, leading various groups and starting programs in the hospital and the nearby prison, in the one leading a meditation program for the alternative health department and in the other, starting various writing groups. This year, having been a fan of the Sun magazine for several years, and having given me a subscription for two or three, until I could afford to take out my own, he decided to start a group for writers based on the magazine and its kind of writing. That's how this group started, though it has taken on a life of its own now and has little to do with the magazine, except for assigning topics to write about, much as the magazine assigns topics as prompts each month for its section called "Readers Write."
This month our subject, our word prompt for writing was "Mom" and we each had to write one page, no more than that, for reading aloud to the group on the last Thursday of the month, which was yesterday. There were three other women who came, plus Bill and I. One woman had early onset Parkinson's Disease, one woman was bipolar and had breast cancer and the other was well now but I think had met Bill because of some serious illness herself, though I cannot now remember what it was. And there was I, with schizophrenia and narcolepsy to round out the group. What a bunch we were with our various illnesses, yet we got along fine.
Uh oh. Something is going wrong with my computer and I'm afraid it is going to quit on me so I'm going to post this without finishing what I wanted to say. I will continue this later. For now, let me paste in what I wrote on the topic of "Mom."
I first met “Mom” when I was 34 and a shy folkdancer, new to town. I didn’t know she would become “Mom” at the time. I thought she was just any stranger.
Outside the open door of the “Y” during a break in my second Sunday night’s dancing, I snuck a cigarette, hoping no one would see me in the dark. A older woman, her graying hair nested in a hairnet at the back of her head, poked her face out, sniffing the air. It was the nicer folkdance teacher. Shit. I shrugged my shoulders to my ears and grimaced sheepishly, expecting a lecture; folk-dancers, after all, were notorious anti-smokers.
“Oh, that smells delicious! Can I have your second-hand smoke?” the woman stage-whispered.
“Used to. I had to quit when I developed emphysema, but I still crave cigarettes -- every single day. If Cy finds me out here--” She stood downwind of me and inhaled deeply. I tried to send as much smoke her way as I could, but the truth was my cigarette was almost gone. Luckily, she needed only a whiff or two. “I’m Lynn, Lynn L___. I’m happy you came. It’s always good to see new faces here,” she said.
I told her my name.
“Come, Pam.” Stepping through the door, she gestured for me to follow. “It’s obvious you’ve danced before. The next one is easy. I’m sure you’ll know it. Join us, you can dance next to me.”
You could say I danced next to her for the next twenty years, leaning on her, relying on her, because my father was estranged and my mother, having to choose between the two of us, had not chosen me. They were not the twenty years Lynn might have expected. Too often psychotic, I spent the equivalent of five years in psychiatric units, most of them locked, some of them locked twice. She visited, along with Cy, as often as she was able, and frequently they drove me home at discharge. My own parents didn’t visit at all. Gradually over time, I began to refer to her, especially when she visited me in the hospital, as “my Aunt Lynn.” It had a nice ring to it, we decided.
Then she fell gravely ill a year ago January and took many months to recover. After that, chronic disabling pain rendered her unable to drive. Worse, her memory was failing: she, a former computer teacher, could no longer handle e-mail. When it turned out I could help her – I could drive for her, send out her email, hell, I could simply sit and visit with her as she had so often with me – we began to confide in one another. It was only when we shared our lives like mother and daughter, that Lynn, at 80, became finally my “Mom.”
Sorry for the long absence. I've not had much time for writing these past two weeks and even now it's hard to find a minute to sit down and actually put my thoughts on paper. I joined a writers' group, or at least have said I would attend next Thursday, but have not yet written the single page assignment on "Mom" that was asked of the members, that's how difficult it has been to write anything at all. I managed one entry in my notebook, and that's about it.
I'm torn, because I could babble about daily occurences easily enough, but am not sure how much that is wanted here. At least one person pointed out that more journalistic entries might be more "my style" and better appreciated...I would indeed like to write on less self-involved topics, but alas, most entail some reading and that I find extremely difficult to do, due to problems concentrating. Another has asked for more of my poems, but those are "caught" when my mind is ready for them and things are quiet enough to dispose me to sit and wait. In short, this is not a time particluarly amenable to inviting the muse, though she comes when she will and could do so even now, though it would be unlikely. And of course there are those who want to hear precisely what I write about now: daily life with schizophrenia, whether active or in recovery.
What to do, what to do? I suppose I could do as I have been, and contribute a bit of all three. There is nothing wrong with that. And that is as fine a solution as any. But I feel at this point pressured to "find something to write about," when I am also under other pressures that pull me in a dozen different directions. Because of this, I am going to take some time off, and write only intermittently this summer, or only as the spirit moves me. I pushed myself to write a great deal earlier this year, and think I have earned myself some off time, and in any event am forced to take it.
Feel free to contact me at my gmail address any of you, especially if you have topics for me to address here, or are interested in my jewelry. But also if you have comments or questions about schizophrenia or anything else I have written about. And check back from time to time. At some point in July I expect to hear from the two places I sent my poetry manuscript to, and will certainly post the response if it is positive. I may also from time to time keep you updated about Joe's condition if there are major changes. But for now, I'm going to give myself an official break until after Labor Day and hope that you all will return then to find out what's new.
Thanks, loyal friends and lurkers all. Don't give up on me, but have an enjoyable summer, wear spf 45 sunscreen if you go outside in fair weather, and come back when yellow schoolbuses once again ply the morning streets. TTFN. Pam W
As you can see, I uploaded some of my more recent creations, though not the absolute newest as I have not taken pix of those yet. THe order was meant to be from the bottom up, but of course you will be looking at them downward, most likely, so you'll see my worst one, the one I like the least, first, and the one I once liked the most last (I say "once", because it was sold, and therefore I can no longer "covet" it). Anyone interested, please contact me at my gmail address above...
Joe saw his urologist today about the bladder polyp he just had removed, and I spent an anxious afternoon, awaiting the news because they failed to come home immediately and I therfore assumed the news was bad. Luckily for Joe and happily for me, it was good news all around: though urologists consider ALL bladder polyps cancer by definition, this one was evidently as harmless as they come and nothing further needs to be done except for a follow-up visit in three months. Thank heavens! Joe definitely does not need another serious illness at this point. I think he is burdened enough...God. So if you happen to be listening, lighten up a bit. Leave him alone. Pick on someone your own size for a change, someone who can and will fight back!
I am doing okay. Joe and Karen seem to be doing fine without me, and Karen seems to have decided that it is okay to simply take over and take up all Joe's time, and Joe is not even trying to spend any time with me...F--k me! Obviously I'm no longer important in anyone's life. No, no, I know Lynn L still cares about me, because she keeps telling me how much she loves me. She calls me her daughter, and seems so grateful for the little I do for her I feel bad that I don't do more. She even offered to pay for J to come every week to help me clean up the apartment, rather than every other week as J had been doing, because she (Lynn) knows how hard it is for me to keep it up. I couldn't accept that, I just couldn't, though I understand the impulse and know she meant it. Damn, I know I should have accepted it! It would have meant so much to her to be on the giving end of things for once...and I deprived her of that chance to feel good about helping me out. It was plain old pride, that's all. It is hard to explain how I know I ought to have accepted, but I LOVE doinog things for others, and feel bad when they don't accept my help. So I ought to have known how she would feel when I said No, and should have allowed her to do something for me. But the problem is I couldn't rely on her to remember, as she is losing her memory and most likely would forget she offered, or would forget to give me the weekly $10 extra I'd need and I simply cannot see asking her for it in that event! No, it simply could not have worked, but I suppose I could have said Yes, thank you, and then assumed she would forget, but at least let her feel good for as long as she remembered what she genuinely wanted to do. Yes, that would have been the kinder thing to do...It is so sad to know she would not remember, because it was only a year or maybe two years ago that she would have had no trouble doing so. It portends bad things I don't want to think about. Her own sister, only 2 years older than she, died last year, and at 82 she had only recently lost her memory.
No voices for a number of days, only music, and that is fading. Haven't heard the little people in a while, which I miss terribly. Dunno why they are staying away. Maybe because I'm keeping my mind busy and distracted, so they can't get in...Still startling at lightning, but need to get an Amox---- level to see if I'm even at the proper blood level before I assume it isn't working. And who knows if the startling means it definitely doesn't work. After all, all my other symptoms seem fine. I don't feel ill in any other way. And the startling is definitely no where near as bad as it could be. Mostly just to lightning and perhaps to sudden, abrupt, loud noises, not to anything else that I can determine.
I have decided to go to the Flea Market with J this Sunday if it is still open, instead of waiting for Karen to go, as she keeps cancelling and I have not gone yet because of it. J offered to help me set up and stay with me for a while, just so I am not alone, before taking her mother to church before coming back to help me pack up again. I hope I can get there, weather permitting, as I really want to sell some jewelry or try to, and that's the only place I know of that I can charge full price and not have to share it. All the consignment stores around her take %60 and frankly that isn't worth it! My brother thinks I should sell on ebay, but from what I can tell, the prices people expect to pay there are even worse. But I don't know for sure about ebay as I haven't really looked around much to see what sells and what doesn't and at what price, though I know that necklaces I looked at were going for .99 to $5.00! That is a rip-off as far as I'm concerned, and not worth the beads I make the necklaces from. I already don't expecty to be paid for my time, but...Oh, F--k a duck! We'll try the flea market and then see what happens. The various nurses who come here so far have been my best customers!
Sorry this is so chatty but I don't feel up to saying much more than this right now. I need some new suggestions about what to write about, what people would like to have discussed...so PLEASE comment, and give me some ideas!
By the way, you can click on any of the pictures below to see the jewelry in greater detail.
As I mentioned, this is my least favorite, but mostly bedcause I do not like big wooden beads. It is nice and summery though, and as I get to wear any necklace until I sell it, I plan to wear this one too eventually! BD BTW it is 18" long.
This was one technique I really had to teach myself. I saw the teacher make one and simply copied it at home but was not actually taught how to make it. Nevertheless, it was not too difficult, though the square one is a great deal harder than the round one, I must say, and did not come out as impressively. The round ones do sell well as people seem to like them, when I have the beads for them.
This one is 21 1/2 inches long and a little lighter pink than the picture looks.
This is one of my favorites, with my own design -- the wire pendant at the bottom. It is 18" long.
I photographed this one carelessly and the little beads on wire next to the main one got tangled. They are supposed to lie flat and straight down next to the big bead, and they do, but not when quickly flattened on a board! 8D The other Unakite necklace has the pendant bead strung horizontally and is linked with pure copper wire, not the "silver" I used on this one. 18 inches
Between 16 and 17 inches long, this is one I happen to enjoy wearing as I like the colors in particular and these "toffee pieces" are small, do not overpower the coral beads.
18 1/2 inches with clasp. This looks really nicer than I thought it would...
Seventeen inches long or a bit longer, and made of two different kinds of glass beads with gold accents.
Necklace is 17 inches long.
19 inches long
I know, I know, you think I'm really reaching for things to write about here, but some of the following tips are quite useful, and amazing to me. I thought I'd pass them on to you as they can save a lot of money, not to mention "heartache"!
--Sweat marks and deodorant stains on clothing? Rub them gently with undiluted white vinegar before washing and they should disappear. NOTE: it is not clear if this will work on OLD stains or just with new ones that have not previously been laundered and dried.
--If your rooms or apartment smell of smoke, place shallow bowls 3/4 full of white or cider vinegar in the smokiest areas. In a day the smell should be gone. You can get rid of the smell of fresh cigarette smoke by waving around a cloth dampened with vinegar.
--You can wipe away mildew from almost any surface with white vinegar, from bathroom fixtures to furniture to clothing. Use straight or diluted 1:1 with water, depending on the stain.
--Polish brass and copper by making a paste of equal parts white vinegar and salt, or vinegar and baking soda (let the fizz stop before using). Use a clean, soft cloth or paper towel to rub this into the item. The tarnish should disappear. Then rinse with cool water and dry and polish with a soft cloth or towel.
--To remove a sticker or decal on painted furniture or a painted wall, or a price tag from glass or plastic etc. saturate it with full strength white vinegar and carefully scrape it off with a plastic card (eg a credit card (expired) or phone card). If there is any residue left over, wet this with vinegar and let it sit for a minute then wipe away with a soft clean cloth or paper towel.
--Vinegar is a great grease cutter. Use a sponge dipped in full strength white vinegar to clean up the entire stove and hood and countertop after frying. Rinse with cold tap water, then dry with clean cloth. A hot plate can be cleaned the same way.
--To extend your dishwashing liquid, add 3-4 Tbs white vinegar to the bottle and shake a couple of times. Because it adds grease cutting power, you will need less and will save money!
--To keep food from sticking to a frying pan for several months, boil 2 cups of white vinegar in it for 10 minutes.
--Blackened, cooked-on grease? Soften it up by pouring in 1 cup apple cider vinegar and 2 tablespoons sugar while the pan is still hot. Leave it for an hour or so. A little scrubbing should then easily remove all the grease.
--Did you know that white vinegar is a great deodorant? Try splashing some under your arms each morning, instead of the chemicals in a stick or roll-on, and let it dry. (Once dry, it has no odor.) Not only does this save money and eliminate possible health concerns, it also avoids antiperspirant stains on your clothing.
Ants? Get rid of them with vinegar. Pour it on anthills or areas where you see ants congregating. Make a solution of 1:1 vinegar and water and use it in a spray bottle for "emergencies." (Scented Bounce fabric softener sheets also work well for this)
PLEASE READ THIS and consider going to the website and signing the petition. I have created links and tried to make it as easy as possible, even providing a ready-made message for anyone to use to personalize your signature on the petition.
In the next few weeks, Congress could vote to DOUBLE the amount of greenhouse gases America produces from our cars and planes.1
It's the greatest single threat to solving the climate crisis in a decade.
It sounds crazy. But Congress is rushing through a package that could lock us into liquid coal as our country's new energy source for transportation. For every mile driven, coal-based fuels produce as much as twice as many greenhouse gases as petroleum.2 That means even a Prius would drive like a Hummer.
The coal industry has been lobbying for this break for years, and many in Congress don't understand the facts. Can you sign on to our petition opposing liquid coal right now—and then please alert your friends?
"Liquid coal would be a disaster in our fight against the climate crisis. Congress should vote against tax breaks and subsidies for coal."
Clicking here adds your name to the petition:
The legislation would take billions in taxpayer dollars to build up to 10 more dirty coal plants, provide taxpayer subsidies when the fuel can't compete on the open market, and guarantee that the government will buy this fuel no matter what.3
The industry promises to clean up after itself, but "clean coal" doesn't exist yet—it's pure fiction. While some technology is being tested to capture the greenhouse gas before it goes into the air, no one knows if it will work. But the plants will be built regardless.
To make matters worse, the financial outlook on this technology is shaky, which means taxpayers could be left holding the bag. According to an MIT study, we could spend $70 billion to replace just 10 percent of current gasoline use.4 And by the time we bring the technology to market, it is likely that cheaper, cleaner fuels will be available for less money.
These snake oil salesmen are in the Capitol in force—selling Congress a line that kicking our oil habit is easy if we just commit billions in taxpayer money to coal. And some in Congress are buying it—even folks who have been with us thus far on the climate crisis. But with this bill, they're gambling with the future of our planet.
Can you sign our petition telling Congress to vote no on coal in the upcoming energy package?
Clicking here will add your name:
The Natural Resources Defense Council (NRDC) has this to say about the proposal:
The coal industry is touting a plan to transform millions of tons of coal into diesel and other liquid fuels—an expensive, inefficient process that releases large quantities of heat-trapping carbon dioxide into our air. Fortunately, better, cleaner options exist to reduce America's dependence on oil: efficiency, smart growth, and renewable fuels.5
An OpEd in the Lexington Herald-Leader, in the heart of coal country, put it this way:
Instead of propping up a liquid-coal industry that market forces have long rejected, the government should harness the market to advance the twin goals of energy independence and reversing global warming.6
We need less coal, not more. And we need government support to go toward developing the commercial scale technology for truly clean alternatives—solar and wind. These energy sources are clean and abundant, and these industries create jobs and can be a boon to the economy.
Please help make sure Congress doesn't take us backward in our fight against global warming. Clicking below adds your name:
Thanks for all you do,
–Ilyse, Mari, Jennifer, Matt and the MoveOn.org Political Action Team
Wednesday, June 6th, 2007
1. "Lawmakers look at coal to break oil dependence", Los Angeles Times, May 10, 2007
2. "Coal-To-Liquid Fuel Plant Plan Advances", The Houston Chronicle, May 31, 2007
2. "Lawmakers promote coal as an 'alternative fuel'", The Austin American-Statesman, May 29, 2007
3. " Billion-dollar boondoggle," The Roanoke Time, June 5, 2007
4. "Why Liquid Coal Is Not a Viable Option to Move America Beyond Oil," Report by Natural Resources Defense Council, February, 2007
5. ""Liquid coal a new version of snake oil" The Lexington Herald-Leader, June 3, 2007
MoveOn.org Political Action is entirely funded by 3.2 million members. They have no corporate contributors, no foundation grants, no money from unions. Their tiny staff ensures that small contributions go a long way. If you'd like to support their work, go to:
Don't forget to go back up to the first two links, one or the other, they are identical, and sign the petition! After you give your name, email and zipcode (street address is optional), you can pen an optional message. Here's what I wrote to my congressperson and senators. Feel free to use all or any part of it, if you can't or don't feel up to writing a message of your own. You all might find the article I provide a link for of interest too. NIMBY is short for Not In My BackYard meaning that though everyone wants their garbage taken away and buried somewhere, no one wants to live near a landfill.
Message to add to petition, if you like:
We do not need to use CO2-emitting coal for diesel fuel, coal which will only double the amount of greenhouse gases spewed into the atmosphere by our country! Please take a look at this article describing thermal depolymerization and Changing World Technologies
This process not only produces a net CO2 emission of zero, it provides a method of disposing of much of the unwanted garbage and nonbiodegradable waste that presently goes into NIMBY landfills. Please, please, please, STOP, think about the impact of this bill on our climate before signing on to something that might prove to hasten the end of life as we know it on this planet. The melting permafrost may prove to be the tipping point that dooms us all, but if not, we need to do EVERYTHING in our power to halt the juggernaut of climate change while there is still time.
Thank you for taking the time to read this note and, what is much more important, for thinking about this bill before blindly signing on the dotted line just because lobbyists for the coal industry have promised clean fuel they will not, indeed cannot guarantee. Coal energy, from diesel fuel or coal fired electric plants is dirty, heavily CO2-emitting. Please put your energy and time behind renewable fuels that do not threaten all the species on earth.
I apologize for going on and on about this subject so often, but to me it is the single most critical issue of our time, more important even than my own mental health care/cure, more threatening, more dangerous, crucial in the most literal sense of the word ("crucial" comes from the Latin word crux, crucis or cross, meaning one is at a crossroads, a point of significant decision-making: Which direction do we go in NOW?)
I know we need universal health care, we need to end hunger in the third world and and stop the genocide in Darfur and for cripes sakes get out of Iraq and solve the Israeli/Palestinian problem and...Not "us" as in the U.S. but us as in humanity, people in general. We have plenty of problems that need attention. But to my mind every single one of them pale to a mere goassamer pastel compared to this looming global catastophe that could render all the others moot. What use is solving the Israeli/Palestinian conflict if the seas rise 200 feet due to the loss of the Antarctic ice cap and Israel disappears from the map? Ditto most of the world's coastline? Give rein to your imagination, if you dare, and think of the ramifications of the loss of most of Florida, all of Rhode Island, Cape Cod, all the Carolinas' coast, Washington DC and NYC, Long Island altogether, New Haven and Yale and most of coastal Connecticut; Boston and Harvard and all related institutions, and that is just the upper East coast. What about Georgia and Maryland? What about the Gulf coast? We're speaking only of the U.S.! Oh, dear, omigod, I simply cannot bear thinking about the future that awaits us! And while I realize that it doesn't help me any to be pessimistic, I see no grounds upon which to be an optimist, and feel I am among the very few who are realistically looking at what is to come, and trying to deal with it, coolly but without flinching. I am not, as the government forced climatologists to do in the latest global warming reports released to the public, toning down the truth. Please note that last sentence. What we were told was NOT THE WHOLE TRUTH. THe Bush administration deliberately forced the panel of climate scientists NOT to tell us everything they wanted us to know. They were made to sweeten the medicine, give better numbers, more easily swallowable predictions than they actually had. In short, even though by omission and by proxy, the government has lied to us yet again.
Why? Why? Why? I do not know. Perhaps because Bush cannot let it be known just how much damage he has inflicted on the world by his intransigence on the climate and global warming issue, by his evil greedy payouts of contracts and political largesse to friends and business cronies at the expense of the country at large and our reputation in the world. I am SO ANGRY at him, and SO furious at the way he has single-handedly destroyed nearly everything this country had going for it, and all in the last eight years, so enraged I could...But I will not say what I could do, because you-know-who might be spying on me, listening in. After all, nobody has actually STOPPED the NSA from wiretapping and surveillance of American citizens. THe only difference is that now the agency does it openly!
I am NOT paranoid in this. I am troubled, yes, but I know what I am talking about, and have known about these programs for years, well before they were general knowledge. I tried to warn people about Eschelon for years, the Eye in the Sky that secretly intercepted communications and computer discourse domestically and abroad. But no one listened. I...Okay. I'll cease and desist. But I knew then, and I know now a lot that you all have been able to close your eyes to. I don't blame you. I wish I weren't afflicted with this knowledge. Yes, I know I do have a tendency towards paranoia, yes, but in this I can only say that even paranoids have enemies. I have to warn you that most for-profit corporations, both foreign, esp Chinese, and domestic, are our enemies, out to get a buck any way possible, lying, cheating or stealing...if it can't earn it honestly. Think GE, think Dow Jones, think Monsanto or whatever it has merged with and turned into. They are not honest and they are NOT our friends. If my brain weren't as fuzzy and foggy as old beaten eggwhites, I'd name many more. As it is, I'll stop here.
Okay, enough for now.
A few additional notes about this last "rest cure" and other thoughts and I'll be done with it, put it away and look ahead to brighter and better times.
1) I am still startling the strange way I have since Y2K, with a high-pitched scream and my arms flying outward then flexing in front of my face or chest. (Lynnie describes this as resembling a moro, a reflex seen in infants. I dunno anything about this having never studied it in med school, though it seems strange that it is not seen ordinarily past infancy.) The startle is most pronounced when lightning strikes and sometimes with "surprising" thoughts or a certain triggering cascade of external and internal stimuli. Most of the time no one knocks on my door at home so unlike in the hospital I cannot use that certain trigger to gauge whether or not the startle is improving. What continues to worry me, though all the docs counsel patience, is that if Amoxicillin doesn't work properly, could additional brain damage be occuring?
2) When I weighed in this morning at 91 pounds -- a pound less than in the hospital -- I immediately took steps, ambivalent though I am about gaining. I made myself eat both cheese and Indian naan bread, a salad with creamy dressing and chocolate chip/pecan cookies, plus frozen grapes for supper tonight, which is three or four times more than I would usually get down. Even Ana, the evening nurse was impressed, though I didn't tell her why. Last week Dr O explained some of the reasons why my appetite is so limited-- something to do with the lean muscle mass that Xyrem helps produce via increased delta sleep which promotes the natural supply of human growth hormone (all of which I was low in for years) -- but alas, as usual I cannot quite recall the connections and path of her explanation. I might google it and see if I can find out more. Since Xyrem is clearly essential to me, both for narcolepsy and apparently to ameliorate some schizophrenia symptoms, there is no question at this time concerning whether or not I should take it. I simply have to live with this appetite thing and make myself eat enough not to lose more, ambivalence or no!
3)I read in Scientific American Mind that the reason Zyprexa causes weight gain has to do with its anti-histaminic action. What the article didn't explain is why anti-histamines, taken regularly at high enough doses cause weight gain in the first place, nor whether this understanding could help Eli Lilly modify Zyprexa enough to keep the benefits and alleviate the most troublesome side effect.
I happen to know from first-hand experience that regular use of anti-histamines does lead to substantial weight gain, if somewhat a less dramatic and rapid gain than Zyprexa's. In the early 90s, before Clozaril was approved and before I had met either Dr K or Dr O, both of whom would adequately treat my narcolepsy for the very first time, my sleep disorder diagnosis was constantly challenged. Because of this the necessary stimulant medication, Ritalin, was doled out in small amounts and often used as a bargaining chip in order to get me to take other less desirable meds. Never was it considered essential in its own right. As a result I never had enough to truly feel alert over the course of a single day, and often took twice the day's dosage to do so, only to suffer the next, having none.
Finally, knowing that Benadryl woke me up rather than put me to sleep, I took matters into my own hands and started taking doses of that along with the Ritalin I was permitted. It took some time to find out how much would keep me truly alert, but it came to 1500mg a day eventually, at which point I started putting on weight. I didn't understand why my appetite, always under control, had suddenly grown beyond any limits I was accustomed to. In fairly short order I went from 102 to 130lbs, all the while feeling to blame, castigating myself, assuming that I was changing due to having reached my 40s and lost any will power. I had no idea I was under the influence of the drug! Or that a drug could do something like that to a person. After a disastrous trial on Clozaril, I lost the anti-histamine weight but when Zyprexa came out in 1996 it made things even worse; I gained up to 150+ despite walking 5 miles a day, then gained 20lbs more after Y2K's meltdown. These drug effects are so subtle, even when the result is not: you don't feel like the drug is doing anything TO you, you merely feel like YOU are choosing to eat more, say, or to read 10 books at a time. Never quite able to understand which is truly you and what can rightly be attributed to the drug. I mean, if the weight gain was a drug side effect, what was my joyous ability to read and my drive to learn? A side effect? A result of the reduction of symptoms? Something actively produced by Zyprexa or simply the liberation of the true me? And how can one tell?
I started writing late today, so I have to leave this shorter than usual tonight. Tomorrow is a busy day, so I might not be up for much writing then, but Friday is free until the evening. I hope I will get a chance to write a fair amount during the day. Saturday, likewise is quiet, because on Sunday Karen and I get up at the crack of dawn to go to the flea market to try to sell our jewelry. Wish me luck as I need to make a little pocket money to justify all the supplies I've bought and to help me make it through the month...
The recurrent headache on admission might have been a clue I missed, but the inability to spell and frequent startling -- as little as a knock on the door or a sudden noise or unexpected sight would cause me to cry out, my arms flying up in front of my chest -- did in fact make me wonder if I were experiencing a Lyme flare-up again. After all, that sort of startling was practically pathognomonic of neuro-Lyme, at least in my case. In other words, it was that single symptom alone that clinched the diagnosis in the mind of the first Lyme doc I saw in Greenwich, and since then it has been the single most reliable signature of a flare-up.
At first I thought I was simply nervous, after all I wasn't startling at everything the way I had at Y2K-- And the dyslexia was really pretty mild, and furthermore, well, I was taking the antibiotics religiously, so it couldn't be Lyme now, could it? I decided not to worry about it and concentrate on other things for the time being, wait and see if things got worse or better.
Meanwhile, they had weighed me when I first was admitted and finding me well under 94 pounds had put me on "inputs [food and liquids] and outputs" measuring the latter with a receptacle they called a "hat". This was supposed to be monitored for several days at least, and my weight taken daily, but after the second day it seemed that no one quite knew what anyone else was doing, with the result that most of the time the inputs were acquired only at the last minute, by asking me if I happened to recall what I might have had that day and several times the outputs were simply forgotten until the hat overflowed. On Sundays, everyone was routinely weighed again. Though I was supposedly on daily weights, in practice this had been completely neglected, for which I was thoroughly grateful.
The girl before me stood on the scale. "97" the nurse read off the meter. "Whoopee!" the young woman cried, "I weigh 97 pounds!" I wasn't altogether sure what this meant to her, was it good to be so low or good to be that high? It had struck me before that there was an enormous amount of attention paid to weight and appearance on this unit, especially on the part of the young women, but the older nurses were by no means unaffected or immune. Everyone talked about it, no matter the race or ethnicity, weight and being fat worried everyone...It didn't seem like a good situation, not for me.
My turn. The scale showed that I'd actually lost a pound and a half. Now this was mainly due to my wearing lighter clothing than upon admission, and to general dehydration, since I had not yet found a way to obtain enough liquid I could drink. I knew this to be true because my pee, collected in the hat, was brown. But the nurses did not know this and I could not exactly explain, what with the next person behind me ready to get on the scale.
The next day, T, a male nurse who'd made out my "care plan" with me (but mostly for me, since I scarcely had anything to do with it), came into my room. "You're off ins and outs," he crowed. I looked at him, asked a question with my forehead. Huh? "You weigh 97 pounds, that's why. How heavy do you want to get?" I knew they had confused me with the young woman who had been weighed before me and in an effort to be honest, tried to tell him so but he didn't seem to hear so intent was he on telling me not to gain any more...
This chilled me. Recoiling slightly, I wanted to write, but didn't want to write, unable to decide if it was worth saying anything more at all. Clearly this guy had his own agenda, nursing profession be damned. The truth was, I was completely appalled. The misunderstanding about how much I weighed only went in my favor, as it took some scrutiny off me. But T's comment, "How heavy do you want to get?", implying as it did that my weighing the supposed 97 pounds at 5'3 (or maybe taller; I slouch so I don't actually know how tall I am) was just right, that I found inappropriate and extremely unhelpful, not to say unhealthy. He seemed to be counseling me not to eat lest I gain "too much" weight, i.e. over his desirable 97lbs. In fact, he was suggesting precisely that, what else could he be telling me? But what gave him the right to dictate that or decide something so inappropriate?
Now, I may have difficulty with wanting to gain weight at all, but I certainly do not want someone with some authority telling me I ought to keep my weight down to a rigidly underweight status quo. He was a nurse! Surely he'd studied nutrition. Surely he must know the risks involved! I don't give a femtogram about his private desires and fetishes, when he came to work, he damn well better act like a professional or he had no business working in a psych unit. Jeeze--
I am not sure, exactly, why his comment so upset me, why it upsets me still. After all, I do not want to gain weight anyway, nor do I intend to go back to that unit or expect ever to see nurse T again. It just seemed so destructive to say such a thing, to make his personal sick preference known! The whole unit was like that: nurses all huddling behind the desk at the nurses' station, there being no back room to talk privately in, so they conversed openly about patients, laughing and mocking me or, and this I heard a lot, discussing their own weight problems and what diet they were on. This may have been going on more in the hallways, I dunno. I could not localize a lot of what I heard, because I was in my room, listening to people talk outside my room and had to guess from what direction the sound actually came. But there was a great deal of talk about so and so being fat or having lost weight or gained it etc and nothing at all about healthy eating or nutrition or exercise, except insofar as someone ought to take up "power walking" as a way to lose "that fat ass of hers."
This was definitely not the place to be for treatment of certain other problems! Moreover, the food -- and I'm not fussy, mind you, it is pretty hard to make a turkey sandwich so awful that I won't eat it -- the food there was abysmal, so much so that I reckon most patients do not eat it while hospitalized even on the medical-surgical floors. This cannot help assist healing. Studies have been done to show that when hospitals hire a chef and serve good tasting and nutritious food, food patients enjoy and actually consume, wounds heal faster, illnesses resolve quicker and hospital stays are cut short...But does this particular "top 100 hospital in the country" care about that? Evidently not, since it is a white bread, gravy, and processed, refined, canned everything that they serve, without variation, day in and day out. Lord help any poor teenaged anorexic who had the bad luck to be admitted there for treatment! It would be a particularly unhelpful and counter-productive place for her to stay. to say the very very least.
Well, as for Lyme, a couple of days later (I was still unable to make myself speak) Dr Gonzalez came into my room carrying a sheet of paper along with his glasses, which he put on, peered at the paper, then took off again. "I got a letter from your doctor, the one in New York, Dr L--- How do you say--? "
I wrote out the name phonetically.
"Yes, and he sent me back the information we needed for you to get your antibiotics. We cannot give you the B______ until you agree to an EKG but I want to start the Am______ today. Is that all right with you?"
I nodded. It was nothing new. Just the same thing I'd already been taking at home. So I thought. But when I actually got the antibiotic I learned that all this time I should have been taking twice the dose I actually had gotten. Somehow, somewhere along the line, someone had been confused about the dose and it ended up with me being given only half the amount prescribed. Aha! So, maybe it was Lyme after all. Maybe it wasn't my fault, my own weakness or something that I did or overdid or underdid that led to the hospital stay, but Lyme once again...Maybe I hadn't been on an adequate amount of Am_______ to keep the bacteria down. That would explain things, it would make things much more understandable. Maybe I didn't do anything wrong this time. It wasn't clear, but clearly there was that possibility...
Once again, it has been brought home to me how predictably Lyme disease lies behind each and every one of my recent hospitalizations. I was taking all the medications, every pill I was given, including the antibiotics and the Haldol. Okay, so I was skimping a bit on the Xyrem, not taking every single dose, partly because I just couldn't remember the 4AM one. Also because I am a night person and hate to have to go to bed before midnight. But in general, I was compliant with all the meds, just as I'd promised Dr O and Lynnie back in 2005.
Compliant or no, things got harder to take and the stresses of my daily life, such as it was, seemed too much for me. The voices started up again, first as music, then commentary, and then commands. Finally came the impulse, urged upon me by the commanding voices, to set myself on fire in order to atone, to sacrifice myself, to mark myself as Satan so everyone would run away...Oh, the voices of those invisible people, they had every base covered: there was every reason to obey them and no reason at all left for me not to. Luckily, Dr O does not consider admission to the hospital a failure on my part, nor anything worse than a safe place for me to go when things are out of control. Furthermore, she counts it a measure of health to acknowledge, before I do anything dangerous to myself or others, that it is needed or to listen to her advice when she says so.
It took some convincing, yes, but when she asked me what I thought Lynnie would want me to do, I knew the answer. Lynnie -- and I know this because she has spoken to many audiences about it -- suffers the agony of unending worries and sleepless nights and the hand-wringing, pillow-pounding desperate uncertainty of the well twin who is afraid she might lose her sister to a single ungoverned impulsive act. When I become psychotic, she is continually on the knife's edge, wondering when or whether she'll get the horrific, unbearable news. Angered by -- something, anything, everything about this illness, she wants to blame on me whatever control I might have had in the latest decompensation. Knowing this, knowing how much suffering I put her through when psychotic, hearing those commands and thinking about how to accomplish them, I decided I had to acquiesce and do as Dr O wanted, even if every bone in my body cried, No hospitals!
There were, unfortunately, no beds at N____ Hospital, where Dr O usually admits me because she works in their Sleep Disorders Center and thus can see me in the psych unit. Dr O invited Jo into her office with us, Jo, my housekeeper/friend/driver/counselee, who when I am well says in all seriousness that she tells me all her problems, that I am her psychiatrist! Jo agreed to drive me to the E.R. at University Hospital, and to give them some papers Dr O was writing out, explaining the situation and giving a detailed account of what my meds were and why.
We left, assuming that I would be admitted to that hospital not too far from where I live. But once in the E.R. despite being assured that I would be admitted, after a long wait in the psych cubicles, it turned out that someone else took the bed after all, and so there was no place for me. I was told that the law in Connecticut requires the E.R. to search for a bed anywhere in the state, near or far, and if possible, to send me there rather than keep me overnight in the Emergency department. The doc in charge said there was only a 50% chance of getting me a bed anywhere that night, but that they were obliged to call around. I tried to rescind my voluntary paper, meaning that I refused to go anywhere, that I wanted to go home. But she said that there were enough reasons to "paper" me, that is to commit me under a 14-day Physician's Certificate (PC) for observation and treatment if I didn't agree to go voluntarily.
In the end, they found a bed at St Francis, a hospital even closer to where I live. But as it turned out, it was not truly at St Francis, but the hospital I'd many years before spent time in -- the Mt Sinai campus as it was now called, in a more troubled section of town than St Francis proper.
I had difficulty getting words out in Dr O's office, being stuck in the world of what preoccupied me. By the time I reached the E.R. I had slipped into silence. I couldn't seem to want to talk, or even make the effort to produce sound. Moreover, the slightest audible sigh brought forth a barrage of abuse from those invisible people who knew their plans for me were being thwarted. I decided it was safer, much safer, and easier not to talk at all.
This state of affairs did not sit well with the doc on call at Mt Sinai, who came up to the floor to admit me an hour or so after the EMT's disgorged me at the nurses' station around 10pm. After discovering that I was not talking, and that he was going to have to read the notes I wrote, he threw up his hands in disgust and walked out the door. The psychiatrist who comes in tomorrow can do this, I can't, he said to the nurse outside the door. Meanwhile the nurses had unceremoniously dumped all the contentsof my purse and a bag that Jo had quickly gone to my apartment to pack for me onto the desk at the nurses' station and were quickly pawing through it for sharps and other contraband. I had expressly told them, in large letters, that I wanted to be there, to watch them doing so, that this was my right. I hit the desk with the flat of my palm to get their attention. One of them looked calmly up. What now? Her voice was dry, almost bored.
I showed them what I'd written on the pad.
"Well, there isn't time for that. We do things differently here. Now go to your room. Your bags will be brought there shortly."
I smacked the desk again. But I wanted to watch!
They paid no attention and someone took me by the sleeve of my hospital johnny and led me to a room, two doors down on the lefthand side. Upset as I was, when I entered the room I was gratefully aware of one unexpected blessing: it was a private room. Barren as it was -- bed, nighttable, a single chair, nothing else, all I could think was, Thank god, no roommate!
They couldn't give me my Xyrem that night, though Jo had packed it along with two changes of clothing in one of my NAMI tote bags, but I was so exhausted I probably would have slept even without the trazodone they did give me. In the morning, I woke to someone asking to take blood, and slipping a needle quickly into the vein inside my elbow. Over before I was conscious of what she was doing, I was ready to fall back asleep, when someone else came through the door and told me to go get my weight and blood pressure taken. I looked out the door to try to figure out what to do. It was confused with people, some patients and some not,and it was far from me to know which was which at that point. All I knew was that I did not know where to have my blood pressure taken, and no one was telling. The Rules made it impossible to leave my room in any event, so I simply sat on my bed and waited for an escort. Waiting for twenty minutes, or more I eventually fell back asleep. When I woke, a few minutes or a hour or two later I had no idea, a headache was brewing in my right temple. I knew this would happen. Each and every time I was admitted to the hospital since the Y2K meltdown I had a splitting migraine for the first 3 days no matter what I did or didn't do. This was so predictable that Dr O made a habit of writing orders for Imitrex first thing upon my arrival on the unit at N____ Hospital.
I will tell you more about St Francis/ Mt Sinai, but what brought home to me how little St Francis cares about its psychiatry department and the patients treated there was an incident that happened during the three days I suffered with my admission headache.
On the second day, or the night of the first day, they attempted to give me my Xyrem, though it was questionable to me whether they actually gave it to me or something else. I was so scared that they had given me a substitute, ie poison, that my stomach rebelled and I threw up almost immediately afterwards, made it only as far as the threshold of the attached bathroom. Since most patients were asleep now, I crept down the hall to the nurses' station with my pieces of paper and indicated that I had thrown up all the medicine I'd just gotten (if indeed it was medicine). The med nurse seemed relieved and said, Well, I think we'd better withhold the second dose tonight until we see what's going on tomorrow. They followed me back to the room, where I threw myself back on the bed, my temple and eye socket grinding, throbbing, pain like a root canal boring into the bones of my skull.
I sensed the nurses standing there, staring at the mess on the floor. They weren't saying much. Then one of them spoke to me. "Pam, will you clean this up yourself?"
I opened my eyes, stared straight ahead, and frowned. I beg your pardon? I threw up after swallowing their poison and they want me to clean it up? What in god's name was this? This was a hospital, not a jail--
"We don't have housekeeping staff 24/7 on this floor. Can you clean it up, Pam? I want an answer. Yes or no."
I could not believe what I was hearing. Did they actually mean to tell me that St Francis, which billed itself as one of the top 100 hospitals in the country, failed to provide any after-hours housekeeping staff for the psych units, even on an emergency basis? What the --? What sort of so-called top-100-hospital treated one of its in-patient units with such callousness and vile disregard? I was too wiped out, and too angered by the very idea, to surrender and do as the nurse evidently expected from me. "NO," I scrawled on a piece of paper. No, I would not get down on my hands and knees in the middle of the night at the peak of a migraine in a hospital of all places and clean up my own vomit. Had nursing actually come to this -- that nurses no longer nursed, no longer ministered to the sick or did any hands on work, nor did anything at all but hand out meds and make jokes at the expense of patients, and do paper work from dawn to dusk and dusk to dawn? It seemed that a once noble and necessary profession had been lost entirely, with nurses only competing with doctors in their need not to touch or be touched by patients.
But I wrote none of that, I just wrote NO. And dropped the pen and fell asleep. Presumably an aide was enlisted to clean the bathroom, because the next morning the floor was spotless. I found out later that evening that the special syringe used to draw up the Xyrem had never been taken out of the plastic it came in, so the nurse who said she had given it to me, mixed in apple juice, had in fact been lying. Whether she gave me plain apple juice or something else, I never found out, and decided not to confront her as I had survived the ordeal in one piece. But I knew from then on that I couldn't trust her. I'd find that I couldn't trust many on the nursing staff.
More on that another time. Although I started with a discussion of Lyme disease, I see that I have not yet made good on my promise to show how it had an impact on my hospitalization as suggested in the title. Bear with me, I will eventually tie all things together in this non-fictional but necessarily biassed (and probably colored by a certain paranoia) story.
Here is an NPR radio documentary that features Lynnie and me in the last half. It is cribbed from a longer interview, or taken from parts cut out of the original and spliced together to make something new. Which is hard to tell. Anyhow the subject is Siblings of the Mentally Ill, but our segment features both of us dealing with my illness, though more through Lynnie's eyes. This may particularly interest families of those with schizophrenia though "we" might want to listen too, to hear about our effect on others. Here is the link. http://www.npr.org/templates/story/story.php?storyId=10264040
I'm trying to format the StoryCorps interview, which aired on NPR a few weeks ago, but with KAREN's name (you can imagine how happy that made me) in order to be able to upload it here. So far, no dice. I get a QuickTime file that only opens by going into my own harddrive to find it. If anyone has a Mac and knows how to convert an external CD into a computer music file that is uploadable to the net, specifically the blog, do let me know!
I remain tired, and next week I am not looking forward to as there is a required "activity" every single day, sometimes two activities, but I hope to write a longer entry on Monday. Sorry it is taking me so long; you'd think I hadn't just undergone a two-weeks-long "rest cure"...which, of course, no hospital stay permits these days.
Regular municipal hospitals in Connecticut with psych units are invariably short-term, and that means Crisis Intervention Centers these days: the average stay has been slashed from weeks to 3-8 days most places. Except for the one State Hospital, where more people are discharged from than who live there permanently, I cannot think even of any well-known long-term psychiatric hospital in the state that is still open and still long-term. There's the Intitute of Living in Hartford, whose name is retained but which was bought out by Hartford Hospital and has become something former patients of the private Retreat would not recognize. I was at a formerly Jewish hospital, Mt Sinai, which had been bought out by the local Catholic hospital, St Francis, which retained the name of each on each "campus".
As for resting-- Well, I did have a single, whereas most rooms were doubles, and I very rarely went to any group, but stayed on my bed taking notes from dawn to dark, except for meals, which they wouldn't allow me to eat in my room for fear of bugs. But more of that on Monday.
As soon as I got home, Karen started in on her campaign to get me to do things with her again. Begging me to come down to her apartment to talk, just when I was writing. My answering machine says so, first thing, and that I will not answer the phone after 6pm. Still she leaves a message that sounds urgent and says Pam, PLEASE pick up! So I do, only to find it is something like she really had to know whether I was visiting tonight or not...Didn't she just hear my answering machine??? I write after 6pm and do not answer the phone! Well, why did you answer, dumkof! (sp?) (which means, I think, "Stupid").
Anyhow, I do not want to write more than that right now, and will save the rest for Monday.