WAGblog

Pam and Joe

Hi All

Well, it is a couple of days after Christmas and I am only just now realizing that it is Wednesday not Thursday...Almost visited C and L already today because I usually visit them on Thursdays, and yesterday I thought today would be January 3rd, which is a week from today. So obviously I'm discombobulated with this holiday schedule, though just two weeks ago I actually drove to C and L's house and walked right in on Wednesday, thinking it was Thursday, so it isn't all the holiday.

Anyhow, how was your Chanukah, Christmas, or Kwanzaa, or your just plain day off from the hustle and bustle if you don't celebrate a holiday? If anyone wants to share how their day went, good or bad, do feel free to write about it or them in the comment section, as you are always more than welcome to do.

We started the Christmas holiday at noon on Christmas Eve with four of us, Karen, Gary, Joe and I meeting in Karen's apartment for a special meal that each of us had contributed to. After hors d'oeuvres, which the two guys ate ravenously as Karen insisted we sit and talk for an hour and a half while the chicken cooked, instead of having it ready when everyone came, we finally ate dinner. Karen, who is Italian by ethnicity, made her family's recipe for chicken cacciatore, Joe had made green bean casserole, which he happens to like and finds easy to chew, I'd made colcannon (potatoes mashed with cabbage) and Gary helped store the food in his nearly empty refrigerator as he generally eats Meals on Wheels and so doesn't buy food or store it. For dessert I had made Christmas butter cookies and raspberry sherbet (the latter of which came out terrible, though I made it from the recipe that came with the machine...the next day I doctored it myself, and it came out much much better). By four o'clock I was exhausted and had had it with people contact, especially since we'd have to do it all day on Christmas, so I said I hoped people would continue without me, but I had to go home. They watched a movie after I left, which is good, and I went upstairs to veg out and lie down as I'd slept only 4 hours the night before.

That night I slept 9 hours and was much better rested for Christmas day. We all woke around the same time, 10 oclock and got together at 11am for breakfast and opening the presents we had bought each other. THen we had to get dressed and drive to my parents house in Madison for Christmas Day dinner, at four in the afternoon. Joe felt strong enough to drive us, so we took his car, though I was worried about his getting overtired once there and not wanting to drive home...and Karen also being too tired as well. What would we do then? As it turned out, Joe had a great time. He was the only adult that my 23 year old niece A would let enter her conversation (hah) about "those lazy welfare mothers" -- this privileged, never deprived of anything she wants, spoiled brat, who knows NOTHING about welfare as we no longer know it actually had the audacity to complain about those poor people who have too many babies just to get free money!! For one thing, A, that welfare system is dead and gone for many years now. Welfare is lifetime limited, and most is workfare, you work for your minimum welfare check...and god help you if you don't find a decent paying job while you still receive it as you can and will be cut from the rolls when your short time allotted is up. If you can't afford to feed your kids adequately, they can be taken from you... But who is A to talk about "welfare mothers"? She never had to work a day in her life until now, when she wants to live in NYC and buy enough clothing so she can change her outfits EVERY SINGLE DAY. She has never served anyone but herself, and has never done anyone a favor unless she could expect one back. I fear she is more like her father every day, a sociopath literally without a conscience (and that is her mother's diagnosis or him, not mine).

But in any event, except for that one sour aspect of the dinner, the rest went fine. I couldn't pay attention to most of any conversation anyway, including A's, mostly just heard that remark and a couple of others, then was distracted. But my father sat down at our end of the table, the foot, turning the head over to Sal, Lynnie's fiance to be, and we and Karen talked softly about safer topics. I ate well, a little of EVERYTHING served. Then had a decent serving of Christmas pudding, a very old English recipe of a steamed cake made of raisins and molasses and brown sugar and flour and suet...absolutely delicious, says everyone who tries it, with the whipped cream "special sauce" my grandmother's grandmother always served it with.

By the end of dessert, though, I could not stay any longer, I simply had to leave, and not be around such a hubbub any longer, so I asked Joe if we could get going, but that seemed to be a general signal to all, which no one seemed to mind, frankly, as everyone rose en masse and started getting coats and saying their good-byes as my father told me he was heading up to bed (it was barely 6:30pm but he gets up at 4am). It had started out a gray day, but now, in the dark, it was pouring and relatively cold for the warm days in the 50s we'd been having, but not cold enough to even turn the rain to sleet, just in the 40s. We took the longer but better lit way home as the traffic was heavier as everyone was returning from Christmas celebrations by then and got there by 7:30pm. We were all exhausted and after everyone picking up their gifts from my apartment, we separated and went to bed, "with sugarplums wearily dancing in our heads."

It was a good holiday all in all, but I am glad Christmas comes only once a year as that much socializing is entirely too much for me, and the stress of having to try to pay attention to conversations in such a crowded noisy room, where I know everyone and hear everything, is overwhelming. I still need some down time in order to recuperate, and may continue to take some days off here to get it. I don't know that I will, but I may have to. In any event, if I don't write a lot this week, I will pick up again in the New Year, after all this -- has died down and I can take a deep breath again.

Thanks for understanding. Once again, feel free to write about your own holidays in my comments section. I'll be checking there, even if I don't write myself. And it will give people a reason to stop by and read, and gives you a reason to come by: to share and get some feedback on what might have been difficult times, or maybe successfully managed times, or whatever. Do tell us!

Short Holiday Break

I will be not be writing for the next few days because of the holiday, but I wanted to wish everyone at the site, regulars and first time visiters alike, a very happy Christmas, if you celebrate it, a wonderful Kwanzaa if you celebrate that, and a terrific Chanukah if that is your holiday of this many-holidayed month! TTFN I'll be back soon. 8D

I saw Dr O today and gave her my log, where she read that 2 weeks ago I weighed 98 pounds, which was up from 97. So she said she didn't need to weigh me and I certainly went along with that, though I hesitated a while, because I didn't know how to tell her that I've been eating so little, so often forgetting to, so often just not feeling hungry and scrambling at the end of the day to get down some calories, that I've lost 2 pounds already. I suspect she would be angry with me for withholding that information, but I dunno how to tell anyone what I weigh, much less her. I mean, I am not too concerned about it, (yes I am but I dunno what to do about it) and I don't want her concern. So why tell her? Even though I think she wants to know. But it's all so crazy, because she weighs me with clothes on, and my weight in half pounds is obviously dependent on what I'm wearing, since when I wear lined winter pants and a blazer I obviously weigh more than I do when I wear light weight pants and a blouse - and I'm as likely to do one as the other, what with this crazy weather! Now, this would not be important if she were after a ball park figure, but we know she is not. She is counting the half pounds! So I ask you, how accurate can any clothed weight be? If she really wants to know what I weigh, she should ask me to weigh myself in the morning, in my undies, and report it to her. I don't lie about it. Why would I? I have nothing to gain from lying and for the life of me I can't figure out which way I'd be expected to lie, up or down! 8D

I'm going to talk to her about this because it really makes no sense for her to weigh me, and I need to know that she trusts ME, as much as she expects me to trust her.

I decided that I will try the neuro-feedback, which is a very different animal from what it used to be when it was used for ADHD and other kinds of specific problems. This is a whole brain approach, with the brain essentially healing itself, wholly unconsciously, in that the person does nothing and is aware of nothing more than an interruption in the music or audiobook they choose to listen to. From what I gather, you choose something recorded to listen to and watch patterns on a computer screen, a rather beautiful screensaver, or I think you can merely close your eyes. And as you listen, the electrodes glued to two places on your scalp, to the right and left of center, record your brain waves -- delta, theta, alpha, beta and so forth. I don't know what each kind means though it will be explained to me as I go along, but I think the delta waves have more to do with your body than other waves do. And we've all heard of Alpha waves and the relaxation response (if I remember correctly...If I don't, somebody help me out. What is Alpha and what does it have to do with?) Anyhow, these waves are not specific to any one thing, just generalized states and areas of experience, but the neurofeedback machine measures if some waves are out of balance with the others, with spikes and peaks that are disproportionate compared to the rest. When that happens, the practitioner will put a limit on the wave size, so that when the spike occurs that goes past that limit, the music you are listening to shuts off for a moment, which teaches your brain to lower the surging, the peaks, and to achieve a state where they are eliminated. You feel nothing. You notice the gap in the music, but that's all. Your brain does all the work. Eventually, supposedly, you end up with a balanced healthy brain that functions at its peak, doing the best work it can do, which is what we all want. I surely do, at any rate. I want my memory back. And I want to be able to read. And I want to feel less evil and guilty, and less paranoid...and so many things. I'd love to find out what my peak is and whether I could achieve something of what Zyprexa gave me, but without Zyprexa! So I'm going to try to trust Dr O, and not get paranoid about this procedure, which is harmless at any rate, and give it a chance. I'll do it once. Then see what I think. I'll report back about it in January, after my first session on January 3rd.

Today I visited C and L, had lunch, sorta-- in that I didn't eat much of it, with them, then came home and had Joe up to wrap his packages for him. We sat on the floor to do so, but I didn't realize that sitting down there would be so difficult for him, and of course he didn't tell me (why would he tell me? He'd rather suffer than admit he can't do something. And I'm supposed to simply know?). But when he got to the floor, he fell over to one side at first because he lost his balance, squatting and then sitting. Luckily, he went slowly and has enough strength in his arms to catch himself, so he didn't hit his head or hurt himself and managed to push himself, with me pulling his arm, to a sitting position again. But why, knowing this problem, he didn't simply tell me he would sit in the armchair while I sat on the floor, I do not know. He can be so damned frustrating, as you all know. But he is my friend, and I love him as my friend first and foremost.

I made butter cookies for the Christmas eve dinner Karen inveigled us to create and attend with her and Gary, but nothing about them came out right, I dunno why. They aren't very sweet, one, and two I couldn't roll them very thin without picking up a lot of the dough on my rolling pin, so they came out a lot thicker than they ought to have so they aren't thin and flakey at all. It's been many years since I did any cookie baking, so no wonder they aren't perfect, but I don't have time to go back and make another batch. Oh well, they are extra, as my real contribution is the Raspberry Sherbet I'm making, plus the Colcannon. Jeeze, then the next thing is the Christmas breakfast that Karen also decided we had to have. Again, I have to cook -- this time, fresh biscuits. Those are easy for me, though, as I have made a huge container of homemade "bisquick" so I only need to take a cup of this mix and add a 1/2 cup water and voila, six drop biscuits are made in a jiffy. But I'll be glad to have all these Christmas meals over with, as you can guess. It's not that I mind being around the food. The food is all great stuff. Just that I don't have much of an appetite and have trouble being with so many people for such a long time. At Christmas proper, at my parents's house, there could be 20 people in the one dining room at one time, which means a LOT of noise and crowding and hustle and bustle and color and stimulation. I only hope there is a bedroom for me to go to if I need to get away from it for a while. My brother and his family may be using two of them; I dunno about my younger sister, if she will be staying over; but there is one tiny bedroom that might still be free that I could use. I'm hoping so at least as I doubt that I'll be able to last the entire time without some break. Joe understands that as does my mother I think.

Well, I wrote this while it was still Thursday, but it is now after midnight, so who knows where this browser will put this entry, Dec 21 or 22. If 21, I'll write more later today. If Dec 22, then I'll try to write again on Saturday to make up for not writing on Thursday!

NYTIMES Letters to the Editor on Zyprexa

It's late and everybody has visited today so I won't write a lot except to tell you that my letter came out in the Times this morning. I want to print all the letters so that you can see mine in context. Note that I am the only one who has taken the drug. The issue surrounds allegations that Lilly withheld or played down the risks of weight gain and diabetes with Zyprexa, though they knew about it all along, as internal documents purport to show.

To the Editor:

“Eli Lilly Said to Play Down Risk of Top Pill” (front page, Dec. 17), about the company’s decision to cover up health effects of its top-selling schizophrenia medication, Zyprexa, is a good example of the strong link between product safety and product liability.

Lawsuits are often the only means for the public to learn about dangerous drugs. This is especially true today, as the Food and Drug Administration has proved unable to keep some unsafe drugs off the market.

The article also illustrates the problems caused when companies settle cases and force the injured to sign confidentiality agreements, as was apparently done in this case. In such cases, wrongdoers can prolong misconduct and suppress information for years.

If lawsuits had not been brought in this case and a lawyer who was not bound by a confidentiality agreement had not come forward, the dangers of this drug would never be known to the wider public.

Joanne Doroshow
Executive Director
Center for Justice and Democracy
New York, Dec. 17, 2006

•

To the Editor:

It seems from your article about Eli Lilly’s marketing of Zyprexa, and from what I know from my experience as a psychiatrist, that the company has behaved as any for-profit corporation would.

While it may not have suppressed important information, it has certainly tried to present the situation in a way that maximizes sales of its product.

For it to do anything else would be a dereliction of duty, which is to shareholders, not patients.

The main hope for patients, then, lies in an objective physician, whose only duty is the good of his patient.

The physician must remain as free as possible from financial incentives and concerns, whether from drug companies or insurance companies, and exert his efforts to obtain objective information about drugs from as many sources as possible, and use this knowledge solely for his patient’s benefit.

It is in the public’s interest for physicians to remain objective, and devoted solely to their patients’ well-being, free from financial entanglements with drug or insurance companies.

Marshal Mandelkern, M.D.
New Haven, Dec. 17, 2006
The writer is an assistant clinical professor of psychiatry at Yale School of Medicine.

•

To the Editor:

Zyprexa is a miracle drug for some of us. That should not be forgotten in light of all that is coming out about Eli Lilly’s marketing practices. It opened up the world, allowed me to read and feel a crackling enthusiasm for life for the first time in years, and it cut down drastically on the voices and strange thoughts.

Zyprexa was also the worst drug I have ever taken, making me gain 65 pounds, adding 100 points to my cholesterol and raising my triglycerides sky-high. I was both ecstatic to be involved in the world and miserable, obese and unhealthy.

The problem is to solve the difficulties with Zyprexa, not simply take it off the market. It is too helpful a drug, especially for those who can tolerate it. I could not.

I now take three different antipsychotics that are effective but not as miraculous.

I miss Zyprexa.

Pamela Spiro Wagner
Wethersfield, Conn., Dec. 18, 2006

•

To the Editor:

Zyprexa is also prescribed in an “off label” manner to some children with autism whose behaviors may be self-injurious, dangerous to others or sometimes merely annoying to the “typical” population.

It is administered by desperate parents who, in the midst of an autism epidemic, are faced with no cure, no other answers and often inadequate educational and support systems.

Children with autism often gain weight on Zyprexa, too, and the specter of their also developing diabetes is horrifying in light of the injections and other additional medication they may need and the inability of some of those afflicted with autism to regulate such a disease without a great deal of assistance.

Barbara Fischkin
Long Beach, N.Y., Dec. 17, 2006

•

To the Editor:

Re “Playing Down the Risks of a Drug” (editorial, Dec. 19):

Congressional hearings into Eli Lilly’s playing down Zyprexa’s side effects, which you call for, will dabble only with the surface of the problem. The rules make the game, and with “nearly every major drug company ... under civil or criminal investigation for alleged efforts” to promote drugs for unapproved uses, it’s time to consider that there’s something fundamentally wrong with our privatized pharmaceutical industry.

Conservative dogma is that market forces lead to innovation and quality, but our experience in the drug business is that the profit motive leads to price-gouging, cover-ups and expensive litigation.

Meanwhile, even when Big Pharma is obeying the law, vital medicines for poor children and rare diseases are neglected, while research and development budgets are spent on advertising to a market that is flooded with erection enhancers.

We need to get the money-changers out of medicine, and make drugs for people, not for profit.

David Berman
New York, Dec. 19, 2006
Next Article in Opinion (9 of 13) »

Well, if my poetry hasn't gotten accepted, at least I can write a letter that is. I wrote one to the largest Connecticut paper at Halloween and they took that one, and this time I wrote one to the NYTimes, after the furor surrounding Eli Lilly's revelations concerning weight gain and diabetes with Zyprexa. Now it seems they may publish that one in the next few days, at least that's what they wrote me today. It is the very first time I have written to them, or one of the very few. Gratifying, to say the least.

All through with anything to do with Christmas shopping and such. If I ain't got it, I'm doing without! But I think I have what I need to cook those dishes and wrap the presents. I treated myself to the torture of a haircut and color (yeah, I do...) -- hate the shampoo in particular, but hate the whole experience! I'm glad it is over with now, for the next 6 weeks at least. Having very short hair is a problem in that way, because I have to keep cutting it to keep ity short, whereas when it was longer, I got away with its growing out a bit more, and changing the style until I decided to cut it again. Then I'd color it myself, to save money and avoid a beauty parlor. But when I had it cut, the beautician said she could tell I did it myself, and used a spray in color! So that convinced me to go to a salon to have it done. Another thing Lynnie pays for as I could never afford it on my check. I never knew how expensive haircuts have gotten, and coloring? Forget it!

Joe and Karen got back from the Clinic late this afternoon, having checked out the AAC devices -- Augmentative Assistive (speaking) Devices. Two were keyboard-like and needed a lap or hard surface to type on, therefore not really better than the laptop Joe already has, and presumably used when one is in a wheelchair and is already seated. The other is handheld, and apparently quite the gadget as Joe is very enthusiastic, doesn't feel like it will make him look too much like an invalid or "geeky" as he puts it. So they are putting through the paperwork for Medicare, and they will purchase it for him, though Joe will have to pay his share of 20% or $500. These machines can run into the 5 or 6,000 dollars so this one was actually a bargain at $2500. It's amazing that one can buy a laptop for under a thousand dollars and download a text to speech program for a hundred dollars, but to buy a small device that does NOTHING but speak when you type in a sentence it costs many thousands of dollars. Does this make sense? They also talked to Karen about the fact that there would come a time when Joe could not use a keyboard...implying that a laptop would be useless. But I have done research and have found that there are all sorts of ways to control a computer that do not require hands or even muscle control, except maybe one muscle or eye movement, or sometimes just thought...I dunno how thought works but eye movement is a fascinating thing to communicate with. You can even talk by spelling out words just with eye movement. And it's a very very easy way to spell. and Low tech to boot. All you need is a transparent board with the alphabet between you and the person who wants to talk. That person looks at the letter he wants to communicate, and you find his gaze with yours, and see the letter he is looking at. That way you can see what he is spelling and listen to him after a fashion.

Anyhow, when they got home at 4pm Joe was so tired he didn't even call to let me know. I had to call Karen at 5pm to find out they were back. But I'm hoping that Joe rests well tonight as he has a cousin coming over tomorrow and he needs to be alert and awake.

I have got to go eat something. Yesterday I barely ate 500 calories, just couldn't get more down and didn't remember to eat at all till it was nearly midnight. It is 7:30 now and I think I'll make some vegetarian noodle soup. So I'm sorry if this is short tonight, but I'd better eat or Ana, the night visiting nurse, will have my head. 8D

Kate K's Blog

If I forgot to mention it, Yin and Yang is Kate's blog and can be found at http://
wanderer62.blogspot.com/ Check it out. She needs readers!

A week before Christmas

In case people don't understand, I am a caretaker of Joe, that mess was straightened out the next day. He thought I didn't WANT to do the job, and I thought he didn't want ME to do the job...That's what our conversations sometimes come to, largely because Joe will not, will never, speak his mind or state what he actually wants, but is always trying to ferret out what the other person wants, or assumes he knows and then tries to accommodate to what he presumes is agreeable to that person. Only, what he decided was not actually what I really wanted. I only accepted it because he seemed to want it that way. Of course I want to be a caregiver! Of course I want to be involved! I just don't want to do it if I am not wanted or welcome.

Last night, however, was a demonstration of the fact that I am wanted, and needed. It was after 1am and yet I had not taken my Xyren for some reason, was just about it though, when the phone rang. I picked it up immediately and heard Joe say three words: I need help. "I'll be right down," I answered, and hung up, flew into my shoes, locked the door and got down to his apartment via the stairs, not even waiting for the elevator, not knowing what I was going to find. Luckily, although there was a big problem, it was nothing dire. His bipap machine had crapped out in the middle of the night, and he had tried to call the number to talk to the people who had brought it over, but the night tech couldn't understand a word he said. So I called, and spoke with another person, a woman, who walked me through a reset about five times, and each time the machine malfunctioned. Finally I couldn't even get it to turn off and the alarm wouldn't stop ringing. At that point, she conceded that the machine was probably broken and she needed to come out and bring Joe a new one. She had a long drive to the office to pick up the machine and a longer drive to get to our building, so we would have a wait of at least 45 minutes, but that was the best she could do. I said that was fine, as long as she could come tonight, as Joe and Karen had to leave in the morning to go back to the Clinic for an AAC device (speaking machine) evaluation and would need the bipap machine for their overnight stay.

Joe by this time was exhausted. His Zyprexa does to him what Xyrem does to me: it zonks him out. So I told him to try to sleep in the recliner, which doesn't go flat and should be safe, plus I'd be there to listen for his breathing. In a couple of seconds, he was fast asleep, and snoring away. I wrote in my notebook (journal) for the next 45-50 minutes until Kerry came with the new machine. She tried to fix the old one, but realized that it really was kaput and plugged in and adjusted the new one. Finally, she tried to adjust Joe's mask so it didn't leak, then after he was asleep and the bedroom light was off, we went to the living room. I signed her papers, and she told me they had a better mask for ALS patients that she thought Joe should try and that they would send out by UPS the next day along with new hoses and a new inside tray for the humidifier that warms and moistens the air going into Joe's throat so it doesn't dry out so badly.

Finally I could go back to my apartment and take my Xyrem and sleep. It was 3:00 am and I wouldn't have time to take the second dose as the visiting nurse would be coming between 8 and 9am and I needed to sleep at least 3 hours after the first dose and 4-5 hours after the second. So I slept from 3:15 till 8:45 and took an hour and a half nap this afternoon. I don't feel too wiped out, in fact I got a lot done today, though little writing, mostly indoor gardening and cooking stuff.

Oh, some bad news on two fronts, not that bad, just disappointing! One is that my manuscript was rejected by Graywolf, which doesn't surprise me...It wasn't organized in any fashion whatsoever, since I have no idea how to, and probably didn't make it past the first reader because of that. I'm going to try for the Femto Press Kalmia Books series next, as this is for writers who write about their experience of chronic illness, both physical and "psychological." Not as prestigious as Graywolf, but so what? The other disappopintment was that I had the little people yesterday in force, in the laminating paper as usual and as ALWAYS. THe laminating paper is where they always come out, I don't know why, but I have never used it without them appearing...

Good news though, too. Joe's second sleep study was done with him wearing the bipap mask (and the machine turned on, of course), This time, so Karen tells me, though I haven't seen the records and don't know the particulars, his O2 saturation only went down to 88% which is a bare 2% below a normal of 90%, which they were not worried about. The verdict was that the bipap was doing exactly what it was supposed to do, and that he should wear it as much as possible through the night. There will come a time when he will need it during the day, but not now. Right now, his stats during the day are perfectly normal, except for his FVC, his lung capacity to move air, which is (so we found out last time at the Clinic) as high as 51%. This is because he had grown familiar with the test and learned better how to use the machine to measure pulmonary functions, which is common. This was great as the first time it was measured at barely 41% which was scary indeed.

On Christmas we are all going to my parents' house iin Madison, Joe, Karen and I, which will be packed with family and friends and relatives of friends! It may be rather overwhelming to me, frankly, but Joe assured me that he won't mind if I need to get away from it all and go upstairs to hide for a while. I haven't been out to the Madison house in years. It is right across the street from the beach and is lovely in wintertime, though this will be my very first Christmas there (first time ever that I've been welcome). I am sure that at Christmas time it is particularly beautiful, with the lights of the decorations all reflecting off the darkened bank of windows. The house used to be a summer house only, so it has many windows yet a cozy feel that is particularly nice at night. Before Christmas, we are having a Christmas eve dinner, just Joe, Karen and Gary and I, for which I am making butter cookies, Colcannon (potatoes mashed with mashed cabbage -- it's delicious!) and raspberry sherbet in an ice cream maker. Karen has the other duties, as this was HER idea, and I frankly am dreading it, I hate all this eating and eating...But I don't mind cooking, and no one forces me to eat more than I can or want to, so it'll be okay. I just have better things to do! :)

Christmas morning, Joe and Karen and I will get together to open presents. Ordinarily I wouldn't buy presents, because I like to give Advent calendars and don't like the commercialism of Christmas. But Karen is into the present giving business, and has bought lots of things for Joe, and I knew he needed a lamp, so...I also bought her an icream maker just like Joe's because she was going to get one after Christmas and I had a 20% off coupon, figured I get it for her for a gift. But those are my only presents and frankly, I'd rather they not be Christmas presents, forced from me by the season, rather than spur of the moment, goodwill gifts that I give because the spirit moves me and not because it is expected of me. I don't mean to sound like a Scrooge, but Christmas should be about more than simply giving presents and eating big meals...We should be remembering those who can't do either, and maybe sending the money to them instead.

Finances - How I cope on a limited budget

First, a poem:

MANY WORLDS

The many worlds theory says that there is an infinity of universes in
every possibility a choice or event has, so that if I toss a coin and it
turns up heads, there is also a universe created where it turns up tails
as well as one where it lands on its edge.

The life I didn’t lead
took place at the bottom of the class, struggling
to get Cs more often than the Ds of failure,
those eye-folds the insignia of my ability
not to do what I was mainstreamed to try.
In the early years, I had no friends.
People shunned me, “the retard,” and feared
I was catching. Outside of school, everything
was “Special” or “Exceptional” which meant
for those who weren’t, not in ways that matter
to the world. One girl called me Turtle, said
You’re slow but you get there eventually.
I liked that, liked her for it.

In the life I didn’t lead
I hid my face and shielded my body
in a thick black abaya, revealing only modest eyes.
I never drove a car or traveled without a man
of my family with me, yet within our walls
I showed off my shiny dark hair, my slender arms
and secretly danced, holding hands
with other jewelled women in my father’s large family.

The lives I didn’t lead are taking place in universes
untouched by ours, inaccessible, though created
by my choices. In some I’ve already died, in others
I live, but with some strange exotic disease,
in this one with schizophrenia,
in a few I may even be completely healthy.
They are none of them up for grabs.
I make a choice, lift this pen—
With one word, I create my world.
I leave all others to the lives I’'ll never lead.

__________________________________________________________
I've created a "post-it note" or stickie as it is called in Apple-computer land on my laptop
and there I've rewritten everything I've bought since December began. I originally wrote it in a small notepad, but I find that transcribing to the computer is safer, because of how easily I lose notepads and pieces of paper. Now, mind you, this is the very first month I am trying this, trying to actually see where my money is going, and it was Lynnie's idea. But it is interesting, and illuminating, and depressing, when I see how far my small check doesn't go...

Now to the nitty gritty. I get both SSDI ( disability) and SSI (Supplemental) because I didn't work often or long enough to have my SSDI check be large enough to meet the minimum standard payment. So SSI makes up the difference, bringing me to the barest minimum they pay, which I believe is or is going to be in 2007 around $623 a month. My rent in this HUD-subsidized housing complex is $177 this year, but will no doubt be increased by the same amount that my SSD check goes up for the cost of living increase, which means, of course, that I get no cost of living increase, and haven't for many years. So while the prices of food keep shooting upwards, my income stays the same year after year as my rent goes up. Ten years ago my rent was $125. Next year it is likely to be $180 something. This leaves me approximately $443.00 to work with all month, in Connecticut, oon of the most expensive states to live in in the entire counntry. If I lived in Mississippi, or Alabama, I'm sure I could survive pretty easily on $443.00, or do better than I could here. But at least in W and Hartford, prices are high. Thank heavens we are not in Fairfield County, where Greenwich is, formerly the richest town in the country (that title now usurped by Beverly Hills, I believe). Prices all through that county are shamelessly stratospheric!

With no further ado, here is:

WHAT I BOUGHT IN DECEMBER up to Dec 15:
Rent $177 (all utilities except phone included)
Books $28
Petty cash $47 (Lunch out, coffee, and drugstore items)
Car $65
Omega 3s $88
Peapod Delivery (groceries) $100
Socks 3 packs of 3 $18
2 bras at Kohls $60 (!)
TOTAL: $583 ( w/$40 left from my monthly check)

However, to help me out, Lynnie pays my cable bill (including telephone, for which basic service is a dollar), my car bills and the Omega 3 oils, which Dr O wants me to take. So those expenses I will be reimbursed for, giving me back $153 which plus the $40 adds up to $193.00, surely enough to live on for 16 more days, since I don't need to do any more Christmas shopping and my only major need is for food! (Now, don't get me wrong. Lynnie helps me with anything I need. But I wanted to see what I could do with just my check this month, minus the regular expenses I don't pay for anyway.)

I dunno what $100 for 2 weeks worth of food sounds like to most of you but it is utterly reasonable here, 2 weeks going on 3 or more, since I have plenty frozen from the delivery before this and plenty left from this one itself. The first time I ordered $150 worth in November and stocked up on freezable foods, like cold cuts from the deli, in half pound packages, and bananas, which are great frozen and great in shakes when frozen. And plenty of soymilk and yogurt and such, things that have a decent shelf life. With birthday money I invested, with some trepidation, in some special plastic containers impregnated with silver nanoparticles that are supposed to keep foods "Fresher Longer" which is the name of the brand. Fresher longer meaning, two weeks longer or so. Meaning, I cut a pomegrante in half stored the halves in one such container for six days, long enough for it to rot if left in the fridge ordinarily. But after that time, I opened the container to find not only a fresh pomegranate, but even the cut edges still fresh, if a little dry, and completely edible! I have stored apples in a container for 3 weeks now and they remain as crisp as if I had just purchased them yesterday. Bread is supposed to remain fresh for just as long, no mold for as long as three weeks. My only trepidation concerns the nanoparticles, which they claim are safe, but I'm not convinced have been tested properly for food contact or for that matter skin contact when used in make-up. Nanoparticles are known to behave quite differently from particles of a larger size, even to behave the opposite. So you cannot extrapolate from what you know about silver in general to say that the nanoparticles will do exactly the same thing, ie be entirely safe when in contact with food. Now, I bought the containers on a gamble that the particles are embedded in the plastic and not actually in contact with the food, but that is probably just justification for trying them. I'm taking a certain risk, I know, and I am hoping that it is not discovered later that some deadly disease is caused by these particular containers...Cuz if there is, I am sunk! :)

Nevertheless, in terms of aiding my efforts to be frugal, they do work wonders in keeping food fresh and not letting it go to waste when I can't eat it all fast enough, yet don't want to buy in small quantities that cost three times as much per ounce. Warning: they are great and useful, but they ain't cheap, not by a long shot. You get 12 per box though, including the tops, 12 containers and 12 tops. And if you want to try them you can buy them at www.sharperimage.com though I am not shilling for them, so if you find them elsewhere, go elsewhere to buuy them if you like. They are the same anywhere, as long as they are called "Fresher Longer" and are yellow, because of being silver impregnated.

I forgot a few expenses that I didn't write down because they only appear on my bank account: I give $40 a month to a soup kitchen cum educational center in Hartford and some small amounts to Unicef and Amnesty International, which take about 60.00 out of my 193.00 left, leaving me 133.00, which I can still live on, I think. I am still paying cash for everything or using my debit card, so I don't have to keep track of more than 2 checks a month (which I don't keep track of really). Still have to learn to keep and balance a check book, if I'm going to use one, and Lynnie thinks I should learn Quicken, whatever that is. I dunno if I'm ready for that just yet. I'm only now learning to keep track of what I buy, and I am sure I have missed things as it is (I have a cushion in the bank to take care of that).

Welp, that's my finances, and I'm not doing too badly, thanks to Lynnie and my parents, Many people are not so lucky in my situation, and I feel for them. If you feel like sharing your financial arrangements feel free to comment.

More confusion

Now it seems there was a big misunderstanding. Joe thought I said I didn't want to do caretaking any longer, and I thought he said he didn't want me to do it any longer! So we both got the wrong message somehow! But we've managed to get it straightened out now, and I'm reinstated as an official caretaker, which I wanted to be to begin with. Phew! We run into these sorts of misunderstandings all the time, largely because both of us want to please the other, he more than I, in that he refuses to tell me what he wants, whereas I will at least do that much. He is always trying to ferret out what I want and then please me by wanting that. I suppose this is in order to please me, but it might be because he doesn't want controversy by disagreeing with me, a problem of his (fearing any sort of disagreement). Or it might be that he doesn't want to feel the pain of "losing" or rejection if his want is refused, so he won't make it known...therefore he can't be hurt. But it means I get frustrated, NOT knowing what he wants and having to guess, and guessing wrong and finding it out the hard way.

Now the problem is this: I do not want to go to the Clinic particularly. Why should I? I mean, I'm not going for me, for my health. It's just a hospital, and it doesn't interest me to see another hospital. BUT I would do anything for Joe, and I would go to the CLinic in a second for JOE...If he wants me to. But does he, or is he only "letting me come"? Am I there on suffrance, i.e. am I there because he is willing to put up with me, or am I there because I can be helpful to him? I DON'T KNOW. Not even when I ask him, do I get a straight answer. I repeat it, as I would to him: I would do just about anything for him (except maybe go to a big party, but Karen would love to do that! BD) even things that I personally would not otherwise want to do, like visit the Clinic. All I'm asking is that I know he wants me to come with him and Karen, so that I'm not just a third wheel, adding expense to the trip but nothing else. Maybe I should write him a letter, calmly, and put it as succinctly as that!

Anyhow, we did get it partly "fixed" today, so I'm going to take him to local doctors' appointments and support groups and so forth, and learn all his machines so that when the time comes I can help him with them as best I can. As for the Clinic, Karen has to go as she must be there to drive when he can't, but if he wants me, I will go, if not, then I'd be just as happy staying home.

I spent time with L and C today too. L is in a lot of pain, as she has been for months now, without let up, and Oxycontin has absolutely no effect. I am surprised the pain doctor keeps upping the dose, as she hasn't responded to ANY dose, small or large. But it is possible that she has not made that clear to him. I hope she does next week when she sees him next. Dunno how Oxycontin can have NO effect whatsoever, but it is possible that the gene that is supposed to metabolize it is deficient, and doesn't work, and therefore the drug doesn't get broken down...But then she should suffer side effects and adverse drug reactions...The other possibility is that she is a super metabolizer and breaks down the drug so fast that the effect doesn't have time to actually be felt...Those are the only two mechanisms I know of, though I'm sure there are many others to explain why a drug doesn't work for someone. She is definitely better than she was in March, a thousand times better. But she was nearly at death's door then, and even when out of the hospital, so weak and confused, we thought we'd lost the L we knew forever. Now she is almost back to normal, but for the pain, extremely thin and easily broken skin, and an obvious mental decline that is sad to see. It is mostly her memory, but that is what makes us us. L is still very much herself still, but she doesn't seem to be able to learn anything new, and has forgotten a good deal of what she used to know of current events and computer usage, two things we talk about a lot. She also repeats herself all the time, telling me the same things each time I visit, completely unaware of it. Yet she is aware that her memory is much worse than it used to be, and that her ability to use the computer at age 80 is a great deal diminished (which is terrible, considering that she was one of the first teachers in Connecticut to teach computers in the classroom). Now she can barely do e-mail. She can open one, and answer it, but then she blanks on how to send it, or how to compose a new one rather than reply to one sent...and that's about all she can do anymore.

C is obviously feeling his age - 87 (I think). He too is in pain a lot from arthritis, and is slowing down a great deal. He is still sharp as a chisel mentally, but so often sleepy that he seems more clouded than he is. He sleeps a great deal during the day, and often goes to take a nap even when I am visiting. But when he is awake and alert, he is still full of wisdom and stories from the Talmud and Jewish history that amaze us all. Nevertheless, he doesn't seem as happy and cheerful as he used to; he seems sad, down, depressed even. I have never seen him this way before and I don't know what to say to him about it, or even if I should. He smiles a little, but it is clearly an effort. Both of them say, it is an awful thing to grow old...which is pretty depressing to hear. I had hoped their golden years would be peaceful and happy ones, not so painful and depressed. It isn't fair, such wonderful, kind and loving people, to have the end of life be so miserable, but then life isn't fair, and that is just how it is. Still, I wish there were more I could do for them. But Joe is my priority right now, and I need time to do my writing, and I have also to watch my own health, so I thank heavens that C and L have plenty of help from other people and friends, and don't need a lot from me usually, except my helping them get out the Thursday-Friday Shabbat Message to the family and other weekly e-mails. C still does shopping and L is almost ready to get back in the drivers seat, if she is able to eventually. She has driven some with C but not alone yet. The big question in my mind, and I think in many minds is will she remember where she is going and how to get home. I can only hope so, at least to familiar places she has been many times.

As for me, no voices or music at all for three days. Nothing, nada, rien! Just the more or less silence of my apartment and the usual apartment noises of traffic outside and people shutting doors and the fridge running and so forth. No women singing or deep voiced man intoning like Paul Robeson, no little people (so far) complaining or arguing. It's pretty cool. It's almost spooky, it's so quiet in here. It will take a while to get used to it again!

Wednesday that I thought was Thursday then Sunday

Boy was I confused today. I drove over to L and C's this morning, thinking it was Thursday, and time for my regular visit...only to find out it was Wednesday after all...But that didn't stick because I called the visiting nurse, thinking she was Karen, the Sunday nurse, not Ana who comes during the week! Dunno where I was. Later even than that, just an hour ago iin fact, I thought it was Tuesday, because there was a party going on downstairs in the community room, and it seemed to me that that had been scheduled for a Tuesday! So not once during the day did it feel like a Wednesday,which is almost over now.

I had a conversation with Joe this morning. I felt terrible about this whole business with Karen, said I felt like just handing her the entire duty of taking care of him and just going back to doing nothing for him but cooking when I felt like it. Stunning me, he agreed. So angrily I got the notebook and file and handed it to him. Then, quickly, I calmed down. Isn't that how it was supposed to be at the start? That others would care for him, take care of medical matters, and I would be free just to be his friend? Well, that seems to be what he wants, so that's FINE with me. I'd rather do that in the long run anyway, though it seems rather selfish. But if he wants it that way, so be it. I can't seem to do anything that matters anyway and the only things I've done that he even cares about is make him lemon sorbet and chocolate pudding (and those ill-fated for him veggie burgers) or cook him soups and homemade TV dinners. The only reason I got involved in his care is because everyone at the hospital told me I'd have to take care of him now. Naturally, I assumed I would. After all, who else would? But he prefers that Karen do it on her own, and that I take the role of sometime-cook and friend only. So that is fine. That is fine. I feel a little bit hurt, but also relieved that the burden is off me and my time is back to being my own. I still see him every day as I always have, but our talk doesn't have to be on the nitty gritty of ALS anymore, unless he brings it up. If he does, or asks a question, then I know enough about it to answer his questions better than most, without having to solve anything.

I frankly don't think that I'll be allowed off the hook so easily, though. Karen won't want to do everything on her own, one. and two, he doesn't have anyone else but me. So I imagine I will be impressed into service at some point, by Karen if not by Joe. And I dunno what I'm going to do then. It was Karen who told me initially that I wouldn't have to do anything but be a friend. So we'll see if that is even possible. We'll see if other friends step up to the plate or if he hires additional help.

Tonight I helped in a happy little conspiracy. Another resident, Phil, who works on the Economic Development Commission in town, where Joe had been active for two years, contributing a great deal until he got ALS, had read a proclamation to him at the annual dinner two weeks ago that Joe had been unable to attend, due to fatigue. So he wanted to present it to Joe tonight, at the Christmas party. Unfortunately, though Joe had signed up for the party, he had decided not to attend, as he was unable to eat most of the food served (too chewy or too hard for him to swallow). But Phil really wanted him to come down at least long enough to hear his speech and accept the "award." So he asked me what to do. I said, I'll bring him down. I know he'll come with me, if I say I'm going but need company to do so.

I finagled it a bit but it was easy enough to get Joe to stop by my apartment and agree to go downstairs where "Chubby and his band" were spieling and singing loud enough to, well, beat the band. I said, let's find Phil, ask him what the entertainment is going to be. Once Phil saw us, he came out and said, Hi Joe, so glad you came. Why don't you come sit down. Thanks, Pam, for bringing him.

That sort of gave it away, but I didn't say anything, and Joe, good sport, acted surprised when the moment came and Phil got up to announce a special proclamation, a certificate of recognition from the Town of W to Joe C for his service to the town. Unfortunately, instead of giving a nice speech, short and sweet and saying a few words about Joe that might have interested people, all he did was read the certificate. This was just formal Whereas this and Whereas that he had trouble reading until people were bored nad talking to one another and shifting in their seats, obviously bored. This spoiled it for me, as I wanted them to listen for Joe's sake. But Joe accepted it with grace and simply said Thank you, I am sure many of you volunteer and deserve awards like this as well. And then he sat down and clapped for Chubby, who had started singing again.

Meanwhile, my eyes were watering and tears were rolling down my cheeks, and I wonder what people thought of me! I was just so happy for Joe, probably happier than Joe was. That was before the certificate was given. Once it was, I was so disappointed in the presentation, that everything shifted into a downfall of mood. I had so wanted it to work, and to be impressive for Joe's sake. If I were presenting an award, I would have practiced a speech and written something that people would remember and enjoy. People do the nicest things so poorly sometimes, and they don't understand why it has no impact...

Well, there's nothing for it, I suppose, and Joe got the point. But I think he didn't think much of it, much of its value, because of how it was presented and I feel bad about that, as it is an official certificate, signed by the mayor and not just a rinky-dink made up document.

No voices or music all day today. Amazing. I didn't notice until Ana asked me, then I realized I hadn't even heard the usual singing! I'm impressed, really impressed.

New Poem plus...

THE LAMENT

“What are you looking for [on the moon]? We don’t want to go where there is nothing to eat or drink...On earth there are women and money. Life is good.” from Burkina Faso, a citizen on lunar exploration.

“We had ice mountains once.
Always fresh water to irrigate our fields.
Now the ice is nearly gone.
Our soil blows away. The desert grows.
You have been to the moon, the source of the rain.
Can you tell us what is wrong with the weather?
The earth is mysterious.
Life is a mystery.
Do you know why you were born?
The moon is no mystery, just a copper disk,
tangled in some clouds. It hangs behind the little stars.
It has no purpose. It is only there for beauty and for lovers.
We don’t care about beauty until our bellies are full.
If we could eat the moon, we’d ask you to go again, bring it back.
But you can’t eat copper. Even we know that.
When you went to the moon, did you travel past the seven clouds?
Did you wear festive clothing? Or go naked?
Was it hot, like copper over a flame?
How is it you did not fall?
Why did you want to stand on a circle pasted on the sky?
We have higher aspirations:
To meet our husbands or wives.
Find the rain that is lost.
Grow food to feed us and our children.
When we are fed, then we will think about the moon,
how you walked on the moon and you did not fall.”

________________________________________________________________
You know, even though I feel like telling Karen to take the cot next time, or the back seat, I can't. Why? Because Joe will offer to take them instead, and she would let him, she would let him make that sacrifice for her comfort, which comes first, whereas I wouldn't dream of it. I took the cot because I felt I deserved only that, and assumed that I would be expected to use it. Karen on the other hand felt she deserved the bed, and took that as a matter of right, and expectation that she felt she would get it.
I get so angry thinking about this it makes my blood boil, because I know they are in it together against me...and Joe doesn't respect a thing I say, though he knows I know more than Karen, and he as well, especially about ALS. He complains that I don't tell him what I know, but I told him 1) he never asks me for any information, and I don't want to flood him with stuff he is not ready for, any more than the docs at the Clinic do 2) what good would my telling him anything do? He would simply discount it as he always does! I once told Karen something to tell him, because he listens to her and not to me, and lo and behold he did...because it came from her, though it was my information/advice. This hurts my feelings terribly.

But I understand that he needs someone to drive with him in case he needs someone to take over when he gets tired, or to drive him when he can no longer, and he is terrified ot alienating Karen by doing the least thing to affront her, like telling her No he won't pay for a lobster dinner etc or setting ANY limits whatsoever. He feels that insecure with her that he is buying her friendship with expensive restaurants...though he really doesn't want to be spending so much money. I know that even if I asked Karen if she would stop driving him if he asked her not to order $37 meals, and she asked him if he minded, he would say No, he didn't mind, just to keep her happy, because he is so scared of simply telling her the truth, of telling anyone the truth, including me. Though I know for a fact that he does mind. And I suspect that Karen wouldn't dream of not driving him over such a trivial matter, though whether she would actually stop ordering those expensive meals is debatable in the end. I cannot fight him, and I cannot fight his battles for him. I happen also to know that his breathing machine face mask makes his face hurt every morning, and I suggested that he ask for a different mask, since there are many many different ones to try. I said, you've got to ask, Joe or you'll just suffer. And he actually answered, well I guess I'd rather suffer! So that means I have to ask for him, or let him go on hurting, which I can't have him do. But this infuriates me, his utter passivity and his forcing me to do what he refuses to. His favorite books are self-help books, and he must have dozens. But so far as I can see, he hasn't ever helped himself change a thing, except to follow Dr Phil's injunction never to snack, which now he has to break as he can't eat enough at meals to keep his weight up. So much good that did him. But of the important changes, zilch, nada, nothing happened that I can tell. He's still an utter wimp and passive as hell, and while he is an all-time friendly guy, he won't share his true opinions on anything, so it is tantamount to lying when he seems to agree with you, because he could just as well harbor opinions the polar opposite, just not be voicing them in order to avoid controversy, his major aim in life.

Ah, why am I saying all these nasty things about Joe and Karen, well, Karen deserves them at any rate. But Joe? I dunno, why not? I'm not saying anything but the truth. I still adore him, despite his faults, and I tell him so, even when I'm angry with him. It hurts my feelings that he doesn't give me credit for anything I say or do. And his passivity is infuriatingly frustrating. But I guess I've said that all before, so I won't further belabor the point now. Nevertheless, thanks for listening.

The CLinic Visit

We drove up to the Clinic Sunday afternoon and arrived at the nearby Marriott by 3pm, checked in and sat in the downstairs pub drinking soda until it was almost time for dunner. We did go upstairs -- my suggestion -- for a short while, because I thought Joe might like to rest a bit since he had driven the entire way, without letting Karen take the wheel once (i'm not sure why...Was he out to prove that he was having a great day?). Then we went down to the hotel restaurant, only to find that it was closed on Sunday nights! We quickly made a reservation at a famous seafood restaurant nearby and took the shuttle there that Marriott provides. I ate fried calamari, which, though appetizer size, was so big I couldn't even finish it, and only cost $8.50 (important to me since Joe was paying for everything.) Karen on the other hand, had a $37.00 lobster dinner, I'm not sure why since she knows that Joe is very frugal and doesn't want her to order such things, yet won't say No if she does...so she does. She could have gotten a reasonable and wonderful seafood dinner for $24.00 like Joe did...All of which set the tone of the whole stay for me.

We got back to the hotel and headed up to our room, which we were all sharing, two double beds and a cot. Now Karen is a large woman, with arthritis etc but only 59 years old and she has a very entitled attitude, such that instead of taking the back seat of the car occasionally, and having me pull up the seat so she can extend her legs, she has simply commandeered the front seat every single time, and relegated me to the back, so I'm a second class citizen whenever Joe and Karen and I go anywhere. No doubt she wants it that way. Now, in the hotel, I knew exactly what was expected of me: I was going to sleep on the cot, no question about it. I was not entitled to a bed, not the way Karen was. Joe of course needed a bed and I wouldn't dream of his giving up his. Plus he needs the bipap machine next to him so he needs the double width of the large bed...But he is paying for the room and for everything else during the stay, so even if he weren't ill, he would rate a bed! This whole situation just burns me up. EVERY time we go to a restaurant, Karen has to ask for something different, something to be returned and reheated or changed. At dinner tonight, she felt cold (it was cold, I was freezing, but it was a huge room and obviously difficult to heat, with many windows etc. It was bound to be chilly) so she wanted them to put up the heat in the entire room just so she could be warmer. She didn't mind at all that it would not only cost more but use morre oil and cause more pollution. She feels entitled to Queen Everyday service everywhere, and will demand it if she doesn't get it.

Anyhow, back to the Clinic, when we got there, Karen and Joe warned me the room might be tiny, implying that there might be room for only two and I was wondering if I had the nerve to insist that I go in with Joe, since I was better at taking notes than Karen with her dyslexia, when we were told it was a larger room with two extra chairs. Phew!

After a very short wait, the therapists started arriving one by one, sequentially. First the Massachusetts chapter of the ALS Association head, MB with whom I had corrresponded by e-mail trying to straighten things out for Joe. Then, in no order, the physical therapist did some tests to determine the strength of Joe's muscles. The respiratory therapist measured his FVC -- forced vital capapcity or essentially his ability to move air, to breathe, as well as his CO2 and O2 levels. The nutritionist talked to him about his weight and about use of the feeding tube when he didn't feel like eating, or was too tired to eat, as he was twice this past week. Then the speech pathologist came in to talk with him about "augmentative assistive communication" or AAC devices, which Joe had been turning up his nose at every time I brought up the subject and I had not been able to figure out why.

To explain: these AAC devices are "speaking machines," you press a button either with a picture on it or with a preprogrammed sentence attached to a keystroke or series of them and the machine speaks the word or phrase. Many are small and handheld, while some look like small computer keyboards and need a flat surface upon which to type. Joe already has a laptop (which he is scared to use or reluctant to) and I found him a wonderful text to speech program with great voices, best we have found yet, much much better than the AAC device voices, but you can't take your laptop to, say, the grocery store or bank or post office, and there he'd need some other way to communicate basic needs. He wanted to use index cards with sentences written on them. Which is fine. But by the time we started talking more about AAC devices, he was saying that the index cards were just a way of keeping track of phrases he wanted to put on the device itself! That of course is a load of BS. He simply was changing his mind about the AAC devices. But I allowed him to save face and have it his way. Still I need to encourage him to use the laptop, maybe buy the text to speech program now that the 30day trial is over, and start practicing using it with me over the phone.

Anyhow, the results of all the tests were actually not as bad as both Karen and I (and I think Joe, at least Joe of three days ago) anticipated. He has gotten worse, but only by a small amount. His breathing has remained stable and his daytime CO2 and O2 are normal. It seemed like his arms and legs were still strong, but his right hand is weaker than his left, indicating some deterioration there, since he is right-handed, and the right hand in that case should be stronger than the left. Also his right foot and ankle are weak enough to potentially start to trip him if he doesn't think about planting his foot heel-first on the ground. If it gets a lot weaker, they will make him a simple molded brace that he will wear inside his shoe and under his pants to add support to the weakened joint and keep him from tripping over his own foot. Whether he will be able to drive at that point I don't know, nor if his car can be adapted with hand controls, or how difficult that sort of thing is. I know he will find giving up driving devastating, but it looks like that is still a long ways down the pike at this point, which is great. The biggest problem right now, though, remains his voice, which is noticeably getting worse, though today it was stronger than it has been. He needs to start using an AAC device to master the learning curve early rather than late, as the neurologist himself urged.

So with that in mind, he has an appointment to go back to the Clinic next week, on Monday- Tuesday the 19th to be evaluated for which device best suits him before he either rents one, borrows one, or purchases one with the help of Medicare. I have an appointment with Dr O on the 20th, which Karen said she would drive me to, assuming that Joe would not be able to (I have told him I don't want him to drive me any more because he should be saving his energy for the Science and Engineering Club that he helps run later on that day at the local community college.) On the 20th though, I was saving my last ten minutes for Joe, to have Dr O explain the results of his two sleep studies, the one without the breathing machine and the one he just had with it. So either he or Karen can drive that day, because both will be coming in case Joe can't drive. If he can, then I'd just as soon Karen didn't come, as I don't want her in my session. Then again, maybe it would be good if Dr O got to meet her! BD

Okay, it is well after midnight and I ought to be extremely tired, though why, I don't know. I've just been sitting for two days, doing nothing for the most part, except taking notes during Joe's 4 hour appointment. But I need to go to bed anyway, because the visiting nurse will be here in the morning as usual, so I'll have to get up whether I want to or not.

Will write more tomorrow, or if this appears on Tuesday's page, perhaps more today.

TTFN BD

AWAY

Hi folks,

I have to bring this computer in for repairs today and I dunno how long it will take. Hopefully they can do it while I'm in the store, but if not, it will be Tuesday at the earliest that I can get it back, and maybe not till Wednesday. But I am going up to the Clinic tomorrow so I will be out of touch from tomorrow till Tuesday at the earliest anyway. I hope you all will check back then.

TTFN,

Pam

Traditional Poem, plus...

THE MISANTHROPIST SPEAKS

“The nighttime is bright and because of the snow
I think I’ll go walking. It’s walking I know
will clear out the weeds that my troubles have sown.

Trees’ crooked knees and bent elbows are bare,
All white and still, they have nary a care.
I wish I were like them but I do not dare

let go of my troubles or they’ll let go me.
I’d have no companions and where would I be?
No other friends have I; no one knows me.

I could learn to make friends just by being friendly
and kindly and loving. But I do not see
how they’d be more loyal than my anomie.

Lethargy loves me and dullness adores.
Apathy has agape. And furthermore,
talking with friends till dawn I abhor.

No, I’ll stick with Trouble, whatever I find.
I will not be loyal, or loving or kind.
I won’t have a friend, no, but why should I mind?”

My father, a lover of classical poetry, really wanted a rhyming and metered poem -- you know, singsongy, so Here, Dad, this one’s for you.

I was in the throes of agony writing it, trying to be serious and yet write it in rhyme and rhythm. Dunno how well I did. The line with Agape, meaning a kind of divine love (you pronounce the e by the way), must be read very carefully, each syllable has to be pronounced. But it does work if you read it right. Anomie means a state of spiritual apathy and lack of energy, a kind of disaffectedness of the soul.

I made Joe 5 containers of Lemon Sorbet yesterday and gave them to him today. He loved it but was sooo tired it hurt me to see. He seemed to get out of breath just eating one. He has been very very tired recently, and I fear it is due to generalized weakness, his muscles beginning to give out all over rather than one by one. But it could be due to his breathing trouble too, I dunno. Since we are going up to the Clinic on Sunday for his Monday appointment, I suppose we will find out then why he is so fatigued so suddenly. He has even cut down to doing one thing out of the house every other day, whereas before he was doing several things every day, and not very long ago at that!

It just creeps up on you, this illness and its changes. You don’t expect them when they happen, but then they do and you have to be ready to adapt. I think that soon Joe will be unable to drive me to my appointments with Dr O, which he always liked to do but which I think is getting to be too much for him.

We had a bit of a tiff today because of his need to please people, his unwillingness to allow people to have their feelings. I had made him about 12 veggie burgers a couple of weeks ago, my soy invention, because he asked me to, and one day he cooked one too little and ate it. The next day he was ill with a stomachache, which he attributed to the veggie burger. Now, I have eaten plenty without cooking them anywhere near enough and without ill effects. There was, however, a 24 hour virus with GI symptoms going around that had probably gotten him. But he persisted in believing that the veggie burgers caused his stomach problems and handed them back to me, because he wasn’t going to eat them anymore. Well, I had made them with love, just for him, and this hurt my feelings, and I couldn’t help but let it show. He immediately started objecting, telling me over and over that his stomach hurt and that was why he couldn’t eat them, because they made his stomach hurt...I said, Joe, you have to allow me my feelings, that’s all. I feel bad about this and I can’t help it. You don’t need to explain or change it or force me to push my feelings down. You need to allow me to feel what I feel. But he was going on and on about how he just couldn’t eat them. So I got up and left, I couldn’t take it any longer. He wouldn’t listen to me as usual and I really was hurt. I couldn’t stop being hurt just to please him and have him leave me alone. He really needs to learn that other people have a right to feel what they feel and he does not have a right to demand that they swallow their feelings just so he feels better.

But I think he is feeling more than the stomachache he claimed, feelings he wouldn’t talk about or admit to: depression and fear. I think he is scared of losing his voice and depressed about how tired he is. I think the limitations of ALS are getting to him all of a sudden – as all this is happening suddenly – and he is scared of it as well as depressed that it means he has even less stamina than he had with schizophrenia. Just two weeks ago he was doing three things a day and enjoying himself. Now he can barely do one thing out of the house every other day and rest the next. He wants to sleep most of the time and I don’t know how to tell him that it is weakness not sleepiness that he is feeling. Unless it is his breathing that is tiring him, but so far as I know his daytime O2 is close to normal so I’m wondering what we could do to help his fatigue so that he would not be quite so tired. I’d suggest a wheelchair, but he walks just fine. I just don’t know how he could conserve energy –

Well, it seems that my duties will become greater in the coming days and weeks ahead, so my entries here may be fewer or shorter in consequence. I will try to write as often as I can, and I should have most evenings to myself as Joe goes to bed early. But I don’t know how long he will be able to continue to function without a lot more help, which Karen and I will have to give, up to a certain point, and then he’ll need an aide. But even then, my time will not be my own as there will be things we’ll have to do that an aide will not – like dishes and cooking and bills and banking and shopping etc. Frankly, I’m not sure I can do it myself, seeing the difficulties I have in the store already. And as for checking accounts, I don’t even know how to balance a checkbook or how to keep track of checks or what to do with a credit card, how to pay it and so forth. If I am made his financial person, the one who can take care of his finances -- he doesn’t want Karen to do it as he thinks she spends too much money -- I don’t know what I am going to do! And I don’t know how to say, No, I can’t! Who else can do it? Who else will?

Argh! Too much to think about and to do. Never enough time. But poor Joe has that problem in spades, so I won’t feel sorry for myself. I’ll find the time to think and to do; try to find the energy and stamina.

Sestina

A sestina is an extremely difficult form to write, at least for me, as it entails using the same six different words for the end words of each line of 6 six-line stanzas. These six words also must appear in a prescribed pattern, such that, for instance, when a word appears at the end of the second line, in the next line it will appear in the first, whereas if it appeared at the end of the first line, it will go to the bottom. However, the last word at the end of the fourth line goes to second place while the word at the end of the fifth line goes to third...so none of it is predictable, except that this pattern is followed throughout the poem. At the end, the envoi or envoy has to employ two words per each line in a three line stanza. It sounds crazy, and I have no idea where it comes from or why it has this form, but it is certainly an exercise in discipline if nothing else, and I think all poets should write at least one just to show that they can. Dunno how successful I have been, but here is mine. By the way, the words I have chosen to use are: stone, one, snow, day, want and soap.

STONE SOUP SESTINA

(When the townswomen refused to feed the stranger he boiled a large stone in a pot in the town square, cajoling them to donate just “a bit of this, a bit of that’” until he had a fine hearty soup, enough to feed everyone.)

Outside, the sky is made of stone.
Children barrel down the hill one by one,
sleds careening wildly across the shining snow.
At home, their mothers bake bread all day
or wash dishes in the yellow kitchens, wanting
more from their lives than food and soap.

The steamy kitchens smell of soap.
In the square, the rebuffed stranger drops a stone
into a pot, hinting at what he wants
to improve his thin broth. One
mother parts with a carrot, another a bone. Day-
light fades as they all add to the melted snow.

The ruddy children come home, tracking snow
and grit across the floor, glossy with soap
and fresh wax. Tomorrow is Monday, a school day.
Hungry, the children fill up their stone-
ware bowls with the stranger’s soup and one
who is always starving returns, wanting

seconds. The stranger calls: Who else wants
more? But the children dream of snow,
how the heavy windswept drifts can drown one
whole town, white as the purest soap,
shrouding houses, pastures, barns, the stone
walls around them, falling silently through the day

while the stranger boils his stone. Today
is the day the mothers have wanted:
a hungry stranger, shut sky the color of stone,
cold riven air disposing the snow
soft and clean, pure as flakes of soap
feathered around their thick ankles. One

day their children will be grown, one
day the snow will not seem a miracle. Today
they will all watch it fall, children, mothers, soaping
the cold tile beneath their feet, wanting
nothing more than this: snow
shining on a hill, a stranger’s stone.

Soap scents the air, the generous hot stone
soup of melted snow all they’ve ever wanted
warming each one that sudden winter’s day.

Yaya's website

Hi all,

This is the website I forgot the address of that I had wanted to post with the others mentioned in my second to last post. It belongs to Yaya, or Ing, the mother of a daughter with serious mental illness. It recounts a parent's journey, but with many excursions into different subjects as well. http://www.mindadvocate.com Do check it out.

Anyone else's blog or website that I missed or don't know about? Please send me the address and I will post it here. Can't link to it as I said, because the link would appear on all the schizophrenia.com blogs, which would not be appreciated. But I can advertise them in a post from time to time.

Joe and Paranoia once again

FORECAST: CHANCE OF SNOW

Report of snow like rumors of battle,
the stirrings of war come to this cold climate.
But no, it is only the white stuff and far off,
not likely to reach down this far south
to touch us yet with its white brush.
But oh, I am waiting for the first flurries,
the first accumulation on the ground, at this point
just the first hard frost would do
as it comes later and later each year.
The one sure sign of December
is the exuberant red flare of my euphorbia,
Crown of Thorns, cousin to the Christmas plant
poinsettia, la flor de la Noche Buena.

Christmas. The shoppers shop nonstop
spending savings on a one night stand, gifts
likely to be, as they say, “re-gifted” should they not
please. Please, I want to beg them, please
save your pennies and donate your dollars
to those who need them more than we
who have all that we need need them. Look
around at all that stuff! How much we could do
without...By dusk, on the cusp of darkness, snow
begins to gather inside the clouds,
spilling out the sides, at first by the flake,
later by the bushel. At midnight, the streetlamps
are veiled brides, lighting up the white dark.

No I am not going to make this an anti-Christmas rant, nor an anti-commercial Christmas rant. The poem does that, gently reminding us of the dangers of over-consumption and the lack of need for it...And that's all I'm gonna say. For now at any rate.

"veiled brides": the image of the streetlights swirled with snow, their lamp "heads" so concealed by snow falling and blowing that they look veiled in white, hence "brides" which might have needed no explanation...BD

Joe's voice is deteriorating so rapidly that he decided today to cancel his trip with his mother to Florida this winter. He was too afraid that he would be dependent on her (with whom he has a very adversarial relationship at best, though he would never admit it, and would say that he merely dislikes her controlling ways, but he tends to "get back at" her in his own way...) and she, at 86, is none too dependable, one, and two, talks talks talks, and would never shut up. I had tried to interest him in a white board and marker plus an AAC device, augmentative assistive communication device, which is essentially a speaking machine, or something that you either touch a picture or word on a screen and it speaks it, or you type in a sentence or more and push a button and it will speak it for you. He does have a text to speech program on his computer, but he hasn't played around with it more than once. He is a procrastinator and also afraid of using his laptop, which I have used and have had no trouble with...But I am not afraid of laptops and he has never had one before. I don't know how to help him. He needs to get going with some of these decisions, but he says it is too much to make more than one a week, I'm not sure why.

Anyhow, he could not be calmed down about this business of going to Florida without a voice, so when he went to see his therapist this morning, apparently he and she decided that he should simply cancel the trip. To which I say HURRAH, because bascially I thought it was a crazy thing to be doing in the first place. Joe and his mother sharing a one bedroom suite in a "residence inn" for 2 weeks in Fort Myers, Florida simply did not seem like a tenable situation. I was sure Joe would be miserable and worse...So frankly I am glad and relieved that he cancelled, though sorry that it had to happen for this reason. I think in the end it will be better for him NOT to spend two weeks alone with his mother anywhere!

_______________________________________________________

I went to the drugstore today and to Goodwill, by myself out of necessity because Joe and Karen were both busy doing other things and could not come with me. At the drugstore, my shoes made too much noise and bothered me terribly. Plus I had to try on sunglasses, which is what I went there to buy (I'd lost my others and desperately needed some clip-ons to fit my regular glasses). Trying them on in front of other people was an agony of self-consciousness and paranoia: I could swear they thought I was going to shoplift them, and that they said so, said to Watch her, she is going to steal those... Then I needed shoelaces and to find them was quite a task as I was unfamiliar with this particular store and didn't know where their shoe and foot care aisle was...So I had to walk up and down looking for them, hoping upon hope that no one spoke to me, and talking to myself to keep them away, telling them to stay away under my breath.

Then at Goodwill, everyone was staring at me, telling me I didn't belong in their store. I just needed to buy 2 plates and a serving platter but it was difficult to get over the feeling that I was unwelcome and worse, actively wanted to be gone. There I talked to myself too, but this time to tell myself just to buy what I needed and then get out of there, but not before I got the things I wanted...Which is I think an improvement over simply hightailing it out of there when the fear got too bad, but not as good as telling myself I had a right to be there and for them to simply leave me alone. But that was not as good as if I had stopped myself then and there and said, Hey wait a minute (as I am doing just now) you have a feeling of certainty and of fear. What does that tell you? It tells you to consider the possibility that you might be wrong about what you are thinking. You think they are telling you to get lost, but what if they aren't interested in you at all? What if they don't even see you or give a hoot about what you are doing? Maybe that is what is going on. After all, do you know who is shopping in the next aisle over, or who just passed you at the end of the aisle? No. So why should they know all about you? Consider the fact that these are paranoid feelings and thoughts, and act on what you know others would tell you about the situation, not what you feel, which is deceiving you right now.

Argh...Why don't I think about this at the moment when I am IN it? I dunno. Perhaps because the feelings are so intense that it clouds my judgment until I get home and can calm down and think about it more calmly. But at least I did it, though it didn't occur to me until I was writing about it just this very minute. I guess this blog is good for something!

On Losing

I'm afraid I did it again. I wrote a whole long blog entry and LOST it. I will try to reconstruct it as long as I have the energy, but I dunno how much I can do of it.

We went to the Connecticut Book Awards -- I'm just gonna condense this as it no longer interests me to describe it -- and I immediately knew we had not won as there were only 8 awards (pewter lamps) on the dais table for 8 categories, whereas there would have been 9 had we won! So that took the wind out of my sails for the first few speeches but by the time the biography/memoir prize was announced, I had recovered enough so that when Roya Hakakian won, I was even happy for her as I had predicted her book, JOURNEY FROM THE LAND OF NO would win, a memoir about her girlhood in revolutionary Iran. I haven't read it, no, but I had heard it was quite good, and moreover it was just too topical and too appropriate to the moment not to interest everyone. However, after all the prizes were given out, one of the judges came up to me and told me that our book was really terrific and that the choice had been very very difficult...So that made me feel better.

Here's a poem about losing:

LOSING

In the short light and coming cold, the trees
lose their leaves to the pull of the ground.
They do not grieve, knowing they bear others
in their bones and that winter is kind and necessary.
Dog-eared, torn, coffee-stained, the book
loses its jacket in the first months of its using but does not
regret the content that thrills between its covers.
The beach loses part of itself to each tide,
the wave sidling up and snatching grains of sand
before sliding stealthily down into the sea again.
Losing anything hurts – keys, a bet, your shirt, your temper.
Losing a friend, spouse or child particularly shatters:
we are all like glass waiting for the hammer.
In this scheme, then, what is losing a competition
to a better winner? The ego loses face and fat
but some would say that is not so bad.
Otherwise we gain humility’s gauze,
a future yet to be attained, open to question,
and something we can live for, not only die with.

The ending I mean to read as We can live for a goal to be attained in the future whereas a past goal already attained is only something that we can die with the knowledge of. It is no longer something to strive towards, in other words.

Not my greatest work, but passable, I think.

______________________________________________

We had some bad news about Joe today when we got the results of his sleep study. They said he had 18 apnea episodes an hour in general and 43 an hour during REM or dreaming sleep. Apnea means a brief episode of not breathing, often broken by a brief awakening to take a breath, rarely consciously, then falling back asleep, though they didn't say if Joe did this or not. They termed this "Mild to moderate apnea" which was good news, I suppose. But what was bad was that they said his O2 (oxygen) levels dropped very low when he slept at night without the bipap breathing machine. In fact, they had to give him oxygen in the middle of the night because of this. I don't know how low it fell, because I couldn't see the sheet, but Joe is bringing home a copy for me to keep with his other records so I will see the results then. This does not bode well if he takes off the bipap at night and forgets to put it back on. I hope he has been scared at least enough not to, though I fear he does it while so sleepy that he doesn't really know what he is doing and can't help it.

One thing I did mind was that he asked the doctors if his breathing and O2 levels were going to get worse, and they didn't give him a straight answer. They fudged it, and I don't know why. It may be because he had told them about his schizophrenia, they were afraid he couldn't handle the truth. But they don't know Joe. He wanted the truth, and was owed the truth. And I think I need to call them and tell them that. Or at least have Dr O tell them that, since she works with them. They talked to me openly, tellling ME there was no hope. But to him they said, well, you might stabilize and have no more deterioration. But those chances are very very slight indeed. .001% to nil. And with his kind of ALS, it is doubtful that it is even possible. ALS is a uniformly fatal disease, Stephen Hawkings or no Stephen Hawkings and whatever disease he has.

But Joe is not that badly off yet. After all, his O2 during the day is 95% and he seems to breathe fine without the bipap then. With more advanced stages, you need the bipap day AND night, and eventually you need to choose whether to have a ventilator and tracheostomy or pass away, if you live long enough to make that choice. We're hoping Joe will, as he wants to try the ventilator route for as long as it is bearable for him. But he has to survive the nights on the bipap first in order to get to that point. There are so many things that can go wrong: he could choke on his thick secretions, for one thing. He could leave the mask off and die in his sleep from too little oxygen. He could aspirate and die from pneumonia, or catch a cold and have that turn into pneumonia too.

So many worries...But he remains as upbeat as possible and I take my cue from him. Now the visiting nurse has come so I must stop. TTFN BD

Poem with Rhyme Scheme

I was talking to my father about formal poetry, that is poetry with meter and rhyme, like sonnets and villanelles etc. He likes what I call the singsonginess of it, the end-stopped lines especially, whereas I love the enjambements where the line continues off the end of the line onto the next line so that there is not the clunky de dum de dum de dum de DUM de dum de dum de dum de DUM of folksinging to it. Don't get me wrong, I am a folksong fan from WAY back and love all sorts of folk music and folk dancing as well. I just don't care for those steady beats and regular rhythms in poetry, as it ruins my concentration and I think cheapens most of what the poet is trying to say, though with enjambements this tends to happen less. I think it is hard to be serious with singsongy beats. Yet one of Robert Frost's less known poems "Provide, Provide" does it well, even with end-stopped lines, so I have to basically say that it depends on the ability of the poet probably. And I suspect ET would probably tell us that certain meters lend themselves more to seriousness than others, right, Paula? Can one write a serious poem to the meter, whatever it is called of dee dee Dum dee dee Dum? ("You are old, Father Williams the young man replied And you hair has become very white. And yet you incessantly stand on your head, do you think at your age it is right?" Dunno if I quoted it correctly but you see what I mean...On the other hand, it is a parody of a so called serious poem of the day, that Lewis Carroll apparently detested.

Anyhow, as to the poem below, if you look at the rhymes at the end of the lines, you will see that the first third and fourth lines rhyme and the second and fifth lines rhyme. Don't ask me why. I don't know and don't care. It may not even be "legal"! It just turned out that way halfway through the poem so I decided to turn it that way all the way through. It concerns -- well I think the story is obvious -- but the person involved was a friend of mine for 25 years but whose drinking habit eventually came between us, that and constant verbal and mental abuse I was expected to take, then accept the apology for and forget. The friend never felt the need to curb the abuse, only to apologize for it afterwards...But the last straw was something physically dangerous, a situation this friend deliberately and out of sheer anger put me in, because I wouldn't give out my medication! After that, I said Good-bye and we haven't spoken or seen one another since. That was about 2 years ago and I'm not a bit sorry for doing what I had to do. I realize only now how abuse like that gets to you and controls you and your self-esteem and how possessive it is and how it keeps you from living life...

Well, after all that, I'd better just let you read the poem. After all, this person did bring about something miraculous in fact, before the abuse started. Popov is a kind of cheap vodka and James Joyce's Finnegan's Wake is notoriously difficult to read...

YOU WERE A POET ONCE

You were a poet once. You saved my soul
with the gift of poems, to read them and to write
inevitably to write them, for writing makes me whole
and I could not not write. I don’t have that control
but follow my urge and my need and appetite,

trusting always that my conscience will overrule
what appetite or urge might cause of harm or ill.
I was speaking of you. You gave me the tools
to teach myself; you should have returned to school.
You found vodka: after one drink you had no will

to stop. And though it seemed deliberate, a choice,
I suppose you couldn’t help it. On conversion day
you recited Hopkins’ Spring and Fall, your voice
not blurred by Popov (so you could even read Joyce!)
sure, mesmerizing, caught up in what you had to say.

It changed me utterly. Few experiences work such magic.
Why you quit poetry for drink I’ll never understand.
Life made you querulously unhappy, so there’s logic
in your refusal to live. But I’ll never not think it tragic
how your gift to me turned sour in your own hands.

WHAT TO DO WITH A DREAM

...of one of your doctors, the one with the electricity
in her hands, the seizure control, your brain,
the one with her parchment, her calligraphy pens
and fondness for what you would never call
even in the most polite company the F word
but say it out all four letters naked under the sun,
a dream of someone you trusted with the frailty
of your life and the brain that has served
you adequately, though not as well as it could,
a dream that she not plays but is Medea, hands
sticky with her boys’ rich, warm, lifeless redblood,
a dream— but is it only that or does it say something
more than the mind’s fanciful confusion
of its female characters? You can’t will yourself
to forget this collision of identities any more
than the expert silver burglar can forget the success
of his life of crime and go chalk-line straight.
There is only one question in the back of your mind:
will she handle you with care or play out the script,
taking your life not just in her hands but with them?

Thhis poem is about Dr S at St R's hospital, where I had my second set of ECT sessions (electroshock therapy). The first 8 were voluntary, as I believe I have written elsewhere before. But I grew terrified of the anesthesia, which I experienced as falling off a cliff into an abyss like a black hole, being sucked into it really, then seconds later being hurled back to consciousness, only to immediately vomit, sometimes all over myself if the recovery nurses weren't prepared. The vomiting wasn't so bad though. It was the experience of being sucked off the cliff into darkness then propelled violently back to the world that scared me to death. So one day, instead of agreeing to follow the others like sheep to the slaughter (we had to walk a long way from the ward to the ECT suite on the other side of the hospital) I snuck to the kitchen and stuffed a pear in my mouth and ate it as quickly as I could. That effectively ruined my ability to have ECT that day as you were not allowed to eat or drink anything after midnight.

After that episode I simply refused to go, and since it was voluntary and I had asked for this treatment in order to rid myself of the delusional need to set myself on fire, which ECT had effectively cleared one other time, no one could make me. So I thought. But one day Dr S came into my room and started talking about the need for me to continue ECT, how I was not doing well, had been in the hospital a month and had not improved and that ECT was the treatment I needed as pharmocological interventions were clearly not enough. THEN she said, softly but clearly, you are going to have ECT whether you like it or not and I have the authority to make that happen. You have to understand that. Whether you go willingly or kickiing and screaming is up to you. But eventually, you will go. Do you understand what I'm saying?

I didn't believe her, frankly. I didn't believe there was any way she could force me against my will to undergo such a barbaric treatment. But as you all know, there was. She took me to probate court, got Lynnie assigned as my conservator and also got her to agree to sign papers allowing Dr S to give me ECT involuntarily...Needless to say, I was pissed. But I also sorta knew it was for the best as I suspected nothing else would work to rid me of these terrible thoughts, frightened as I was of the anesthesia. Amazingly enough, the second series of 8 sessions was not as bad as the first, and I got used to the anesthesia after all. But as for outpatient maintenance sessions, once a week to begin with, diminishing to once a month eventually -- those I would not tolerate and despite the court order, I decided to risk it and refuse, figuring no one would force the matter after I was discharged, nor would the police actually come 35 miles just to pick me up and forcibly bring me to St R's for the treatments! I was right. I wrote a note to Dr S telling her why I wasn't coming and mailed it, and no one made any fuss. I simply dropped out of treatment and never went back.

A few months later I set my leg on fire, but I think that was due to the general failure of the treatments not to my refusal of maintenance.

Anyhow, as to the poem, in my dream Dr S is Medea, an ancient mythic Greek woman of whom all you need to know is that she murdered her two children, sons, in order to get back at her husband, Jason of Golden Fleece fame. To dream of the doctor this way is very suggestive as she literally had my life in her hands, as the poem says, and that is what it is all about.

------------------------------------------------------

Joe's bipap alarm has been going off every night several times, and we thought the machine was broken, that there was an air leak somewhere that was triggering the alarm, which simply wouldn't stop. But even with a new machine, last night the alarm woke him and he realized, being more alert than usual, that he had not been breathing, and that is why it had gone off. That is what I fear the most, that this sort of apnea -- stopping breathing briefly or longer during sleep -- which ought to wake him to take a breath, won't do so because of his sedation. But he feels so good and alert during the day that I can see why he just doesn't want to spoil that by taking any Zyprexa then, and I appreciate that immensely. When I was on Zyprexa, the visiting nurses and Dr O made me take all 35 mg during the day so they could make sure I took it. But it made me sleepy, so much so that my day/night cycle was reversed and I'd stay up all night simply because it was then that I felt most alert. Damn, this is a problem! I don't want him to have an iota less of quality time during the day...Yet I fear for him at night, sleeping as deeply as he does with a tendency to accidentally take off the machine mask and not put it back on...

I had an aha! moment with Dr O on Wednesday when I finally understood part of step two that I hadn't before. When I have a feeling -- the reason for her mantra "the feeling is primary" -- like rejection or feelings of being hated or of fear, it is so intolerable to me that I IMMEDIATELY resort, or my brain does, to making up a story to render the abhorrent feeling null and void, irrelevant or unimportant. If the story is so much worse, the feeling fades into the background and goes underground, and I focus then on the story, the delusion my mind has constructed in its effort to avoid feeling the feeling! I understood this viscerally, in a way I hadn't before...Or had perhaps understood several times before, but it felt like something new. It must seem like I have the same revelation over and over to her, to you. But I keep losing the insight, losing insight altogether, and have to regain it all over again, especially after a hospitalization. I imagine it must be frustrating to Dr O, though she doesn't show it...

I think part of the problem is that I don't pay attention very well. So I keep missing her explanation and don't know how to ask her to repeat herself, so ashamed am I of NOT paying attention. I fake it most of the time, since I have not heard a lot of what is said. I try to act like I understand much more than I do. Oh, sometimes I am there, and do pay attention. But only when the sentences are short and the answer or question is short. When faced with a long unbroken question or soliloquy that I can't interrupt with a question or anything to chop it into hearable quanta, I lose attention within a minute and have to keep pulling myself back to whatever is being said, which gets harder as I lose the train of thought, missing more and more. This is my problem with reading as well. I can't keep my attention on the subject at hand very long, but start daydreaming or thinking about other matters very quickly, sometimes before I've read a full page. Occasionally I get into the reading and can read several pages before becoming distracted. But usually it is only a few at best...Partly I get sleepy, but mostly I simply zone out and start thinking of other things and lose track of what is being said on the page. Ditto conversation. I have to try very hard to pay attention and NOT lose track. If I do even once, I am sunk as everything hinges on staying in touch. With Joe I can ask him to go back and repeat himself, though he never realizes quite how far back he must go. But not with most people.