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I saw the neurologist yesterday. Dr O made an appointment, which is the quickest way, at least in this area, to get in to see a specialist without a long, long wait, as I have discovered, though purely by accident. Anyhow, to get quickly to the point, I passed all tests with, I think, flying colors, or at least the myasthenia ones, as he pretty much said he didn't think I fit that pattern. He did a complete exam and EMG -- electro-myelogram, where he applied electric current to certain nerves in the skeletal muscles and then needles into individual muscle fibers. All was in order, but he ordered specific bloodwork for next week sometime to rule MG out and check out other possibilities. Also, he wants me to have a brain MRI, but as the form says, not to look for MG but to rule out a "brain stem lesion." I am mystified...Today, I seemed to be able to see pretty much all day long, except for the last part of driving to and from the store, when I had a lot of trouble on the last few blocks home. But that was understandable, as I was sleepy and the road was hypnotizing me and I simply needed to get home and wake myself up or take a nap...which I did about five minutes later (got home safely by blasting right-wing talk radio until I was infuriated with their stupidity). Now, even at the computer, but after a nap, I am doing fine, no trouble seeing, though the computer is where it always shows up, or usually does. Maybe it does have to do with sleepiness after all, as Dr O suggested Wednesday. Wa,al, since I need the brain MRI for my Lyme doc, I might as well have it done, but now I feel foolish for all this fuss, since it doesn't seem like anything serious would come and go!
Anyhow, I am making jewelry like crazy these days, trying to do something special for all the women and girls in the family. I have taught myself a lot about wire: how to twist it with a drill and hammer it for strength or to flatten part of it, and how to make my own findings (earring wires and jump rings to connect components and clasps and such) . I have even made a few of my own metal beads just using wire and have learned how to enclose beads in wire a number of ways for a really nice dramatic effect. Joe and Gary are sick of hearing Karen and I discuss this hobby, as they would be, naturally. But it is all I do these days, whenever I am not writing or visiting Joe or Lynn, or eternally trying to read. I do not like the acquisitive side of the hobby, the fact that I have to keep buying supplies, which don't come cheap. And what does one do with the objects one produces? I can't give enough away...Too many people in this building of the elderly and disabled never do anything or go anywhere where they might wear jewelry, or think they don't. And I do not know but a few people and those not well enough to ask if they'd like to have a necklace or bracelet... I'd give them out as Christmas presents, but...Now that's a thought. Maybe I will ask the building manager to put up a sign offering FREE HANDMADE JEWELRY for anyone wanting a good Christmas present for a daughter or grandchild. I mean, what am I hanging onto it for? For the Flea Market in the spring? Why? TO make a few dollars, when all anyone would pay is maybe $5 a necklace, which is frankly insulting! I'd rather give them away...It's a hobby and an art unless and until it becomes a business, and the pleasure is in the making, not the selling. I think I've just answered my own question. As for the Flea, well, tengo mucho tiempo (I have plenty of time) in which to make more!
Joe's wheelchair from the ALS Association has arrived, but it was not outfitted for a ventilator and so is in the hospital shop being adapted and Joe has not yet had a chance to see or use it yet. I have not seen him yet since the Sunday after Thanksgiving...Too long, too long, but everything got in the way, other visitors took precedence over me, then my schedule prevented it, then the doctor's appointment...Sunday is my day and I plan to drive myself there, taking the highway...A first, but I have to do it, it's the only way I can get there in the time that it is possible for me to drive safely: under 15 minutes. If I take the back roads it takes 27 minutes, or more, which is simply too long, and puts me to sleep. The highway not only is shorter, it is more nervewracking which should give me additional adrenalin to rev me up and keep me alert as well.
Joe in general is doing quite well. Though he is gradually losing ground to his fundamental illness, his spirits are good and he is adapting to life in the hospital, beginning to become interested in the world again. His illness is no longer the only thing he will talk about, which is a good sign. I wish he could plan a bit ahead, and prepare for the future, in the sense that when we suggest he think about 1) purchasing a speech generating devise (SGD) that will be useful for when he cannot use his hands any longer or 2) practice using the Eyelink with us, the very very low tech way of spelling out words, without a computer or any other interface but a transparent plastic sheet with the alphabet on it, I wish he would DO so...But he refuses every time, and so we are left scrambling at the last moment, and he is left in desperate straits.
That's how it was with the feeding tube -- when he finally decided to use it, it was when he was desperate, and we didn't know how or what to do, nor did we have the proper equipment on hand. But he hadn't prepared for it, nor had he practiced as suggested, so we were scrambling, and he had to go hungry for two days as it could not be done, or done effectively enough. But Joe is Joe and I love him and deal with him the way he is.
Lynn, on the other hand, just gets weaker and weaker, and is clearly losing ground. Leila, her sister and also my friend, had to take her cigarettes away, She doles them out now, so she can monitor her smoking (though not limit it, god knows) because Lynn doesn't seem to understand that she is on oxygen and cannot light up when it is turned on or she will set herself on fire (to say the least) and possibly blow everyone else to kingdom come as well. She called me today to ask me to go over there and bring her cigarettes. I didn't understand why she needed any as I knew Leila had bought her 2 packs and I said she should ask Leila for them. She seemed reluctant to, and hung up with words that cut me to the heart, words that made me feel as if she thought finally even I had betrayed her. I quickly called Leila, who told me what had happened, and explained the situation.
At long last, Cy and Lynn are getting live-in help, name of Carrie, starting Monday and Leila and her partner Catherine, are leaving to stay with friends starting Wednesday. They plan to return for only two days a week from now until Jan 1, when they leave for Central America. Though they will be back in March, if Lynn lasts that long, I will miss them...I think she will survive at least through December as her son, Dan, is coming in January and that will give her a reason to live until he is here. But after that, I can't even predict. She wants to go, I understand that. But something is keeping her here, and I think it is Cy, her husband, who is desperately afraid of losing her, and who himself I think cannot survive her passing.
Odd, though, she seems almost angry to be alive, eager to die, which seems not quite right. Is she depressed? Why anger? Is that normal?I don't know about these things. I know her arm causes her great pain that is never resolved, no matter how much pain medication she takes. I understand that smoking is her only pleasure, and she does it alone now, without much solace or company, though I join her when I can out of sheer sympathy. But to die in anger, to die eagerly, that doesn't seem the way to go...It almost, in fact, seems to impede her dying, as if it so energizes to be angry, to be eager, that it gives her life-force and keeps her alive! Am I missing something here? Her memory is failing terribly, which I know is something that signaled the end last year when her sister died at the same age Lynn is now. I think Lynn expects to die, now, because June did then. But June did not have a husband like Cy to contend with nor his will to have her live. Perhaps that is why Lynn is so angry. I would like to ask her, and maybe if I have a chance, I will. I only hope her memory is bad enough that she forgets that I would not bring her cigarettes today. I fear, however, that that much will have stuck, smoking being one of those islands that is so important to her that she can remember everything that has to do with it.
What will I do when she dies? What will I do? Oh, god, one down, two to go. Cy will be next and not long after. I don't know how long Joe will have. Perhaps if we are lucky, years. If not...
I'm sorry for not writing for several days. Last week was Thanksgiving. It was also the 44th anniversary of President John Fitzgerald Kennedy's assassination. I noted that but few others did, I'll bet. Was anything on TV about it? Probably have to wait till 2012 and the 50th anniversary for much to be made of Nov. 22 anymore. Sept 11 has pretty much superceded it as America's most terrible moment, and rightly so for this generation. But for those of us born in the 50s or before, Nov 22, 1963 was a horrible and life-changing day, no matter which side you were on of the political fence. I think even Republicans who hated JFK were shaken, stunned, and changed by an event not the most vitriolic Kennedy basher could have wished for. I know I was, and I adored him.
On a somewhat, though only barely, lighter note, since I do not want to go deeper into an always dangerous subject for me, I went to the ophthalmologist on Friday. It was for my regular yearly eye exam, yes, but I'd made the appointment at this time because I've been bothered by an ongoing problem I'd simply gotten fed up with: the tendency of my vision to go double or even quadruple whenever I get tired, when my eyes get tired, that is. Even as I am typing this, at 11:30 pm, after a full day of using my eyes and the last few hours in front of a computer screen, I am having trouble seeing what I write. There are multiple images before me; the letters all run into each other so that, reading, I cannot be quite sure which line I am actually on nor which word is the one that I should follow.
There now, I just put a business card in front of one eye and anchored it with my glasses. So now I can see, using one eye instead of two, though I have no distance vision. But when Dr E, who had pooh poohed the problem at first, or at least had not wanted to deal with it, dunno why! heard that fatigue made it worse, even caused it, he suddenly seemed concerned, and told me to see my internist. He said that it was a symptom of myasthenia gravis and that I should be checked out for it. Well, myasthenia gravis! It's an autoimmune neuromuscular disease, much better characterized than ALS, and less often fatal, but wouldn't it be the strangest thing if I myself came down with a disease in the same family as the one that is taking Joe?! You'd really have to ask what we'd both been exposed to, no?
Iin any event, I saw the internist today, and as usual, he didn't talk to me (he has a reputation as a very personable and concerned and compassionate physician who spends a lot of time with his patients, but I have never seen any of it.,..). No, he simply looked at his computer, wrote out a referral to a neurologist, ordered bloodwork, and got away as quickly as possible, not a word to me about myasthenia, no questions, no comments, no tests, no exam, nothing...Not even a history to determine if it could be something else instead! I'm sorry but I think I might have a right to feel paranoid about this. He ALWAYS acts this way with me, yet when Joe had a first appointment with this same doc, he spent a full hour with him. My first appointment was five minutes. I suspect there is a conspiracy of local doctors against seeing me, and I think it has to do with a single one who hated me because his nurse decided I was faking narcolepsy and seeking amphetamines...so he blacklisted me!
Well, so my very compassionate doctor did nothing to allay my fears or even discuss alternative diagnoses, only referred me on, and let me swing in the wind for however long it may take to get an appointment with the neurologist. That could be 2-4 months, who knows? Dr O might be able to get me in sooner, with that doc or with one at her hospital, but I am not sure. So it could be months before I even begin to have an answer, and if it isn't MG, then what the hell is it? I need to know, because I would like to find a way to cure it, which is why I went to Dr E in the first place.
I said a "brief entry, so I'm stopping here, as it is midnight and I have to get up early in the morning. Gotta take my Xyrem too, and that will put me to sleep in a half hour...TTFN and more soon.
Well, maybe not disaster, but it has been a distressing and disturbing day since the mid-afternoon, when the trouble started.(Warning: I'm too tired to proofread this, so proceed at your own risk!)
But let me back up a bit and give you some of the history that preceded it: Karen, as is her wont, decided that we, Gary, Karen and I would have a big Thanksgiving Day meal in Joe's hospital room, and that we would bring it in from the outside, a catered dinner preferably, or the equivalent bought from Bliss Market, a local specialty market, known for its delicious but pricey prepared foods. Now, mind you, she had already FORCED on me a birthday party the week before I had told her in no uncertain terms I did NOT want...and she had insisted, and worked hard to make me feel guilty if I didn't -- It was Gary's birthday too -- several days before but what the hey? -- and he needed a party and Joe would love it if we had another in his room and wouldn't it be just the thing to have a chocolate mousse cake for Gary, who loved chocolate (never mind that I really wanted a much less expensive Carvel cake bought at Stop and Shop...IF I had to endure a party at all) and of course Karen herself loved chocolate mousse cake so that was two votes against my small voice voting hopelessly for Carvel on my own birthday.
Now mind you as well, Karen doesn't PAY for any of this, no, she has free use of Joe's credit cards, and while she wrangles permission to use them, and uses Gary as an imposter for Joe to sign for purchases, she manages to way overspend for every party she organizes. She CLAIMS that she works hard at it, but truth to tell, she is a shopaholic and loves to spend other people's money. She buys matching paper plates in two different sizes and cups and silverware to match (as she did this T-day). In addition, and I'm now speaking of Thanksgiving, for example, she bought a large china platter for the turkey, as if none of us had a decent platter that would do? She never asked me, that mu9ch I know. She bought China bowls and serving dishes, though she has dozens of her own...All from Joe's money for one little Thanksgiving party in Joe's room, where the food could not even be displayed, but had to be kept in a room off the unit! I swear, I hinted openly (oxymoronically) that maybe she shouldn't use most of the items she bought so freely but return them unopened, since they had no real purpose any longer. What use did we have for special serving dishes, when we were all going to fix plates, then heat them in the microwave and take them to Joe's room to eat off TV tables? Even the TV tables were unnecessary purchases as far as I was concerned. I had no trouble eating without one (I had refused to let Joe -- or his money -- finance buying one for me). Nothing needed cutting, and the Chinet paper plates were perfectly sturdy for setting on a lap.
Ennyhoo, the birthday party had itself been a trial, and I had been at pains to be civil and sociable the entire afternoon, wanting so much only to be with Joe and not with anyone else...And disgusted with Karen's constant attempts to show me how tight Joe and she were. Luckily, right in the middle of the party, Joe beckoned me over to him and asked for his computer, and showed me the card he had written me, plus the parrot pictures from his calendar that he intended to go with each line...It clearly contradicted everything Karen was trying to goad me into believing, and I think Joe had me see it at that time because he understood that's what she was up to.
That was the B-day party, which I dreaded, went to and survived, if barely. No, I did not thank Karen for it. I did not even THINK to thank her for the party. I felt, rather, that she had had HER party just as she had wished to, and that I had attended like a dutiful child, and that was quite enough. The very fact that she had gotten HER choice of cake still galled me, furthermore, and I was in no mood to actually thank her for something for which I wasn't the least bit grateful! That, it turns out, somehow bothered her, as you shall see...
Today, another, yet another party loomed. This one I personally was paying for, except the partyware, for which Joe had picked up the exorbitant tab (Karen's super shopping sprees clearly cost a mint). Wednesday, a friend, Josephine and I (I should write a post about Jo sometime if I haven't already) picked up the turkey dinner at Bliss Market, and Thursday morning, Gary brought it from his fridge to my oven for me to do the last bit of cooking required before we packed it up and got ready to bring everything over to the HSC (Hospital for Special Care). I was already dreading the day, but eating turkey I looked forward to, one food I actually like, at least once a year.
Karen and I drove to HSC together, in Joe's station wagon with most of the party stuff in the back, while Gary drove my car in order to have it there so he could transport Joe's mother home afterwards, an hour's drive there and back. We hauled a lot of stuff up to the all-purpose room we had reserved for our dinner preparations, and I went back for the rest of it, while Karen, as expected, simply abdicated from helping. She SAID, let's go down and get the rest, but when I got up to go, she just sat there, and let me go alone...Typical of her, the mixed message or the conflicting message of word versus deed. It's part of why I just don't like her, don't trust her...
I got the rest of it upstairs (Karen wanted Gary to do it, as she has him do all her dirty work, simply orders him to do it) then went to say hello to Joe and his family members who had driven his mother into town. We all went, and A and her partner P eventually said good-bye and left, so we had a chance to visit with Joe alone, which went okay, though poor Joe was left to emcee the goings on, as no one else could unify us three with his mother. I could tell it tired him after a while, and suggested that we go get our plates and eat, so he could have a rest. That's when things started to get dicey. First of all, Karen...Oh, Karen is out for herself, and herself first and foremost. And especially around her peers has no compunctions about putting herself first. With her peers, she is selfish and greedy to an extreme, and has no thought for others...Except for Joe, for whom she has conceived a liking either due to financial reasons or simply because he is a captive audience and she cannot stand being silent or alone. Joe she puts first...unless it is a matter of her comfort, then she still comes first and foremost. No one's food or comfort supercedes Karen's, NO ONE's.
This was rammed home to me during our meal today, when I really should have expected it. I would not have behaved as she did, microwaving my own plate first and then simply sitting down to eat without waiting for anyone else. I would have done my own plate last and would have microwaved others plates for them, I know I would have. That's what I thought she was doing. But no, she did Mrs C's plate, only, then hers, and that was it. I was actually appalled. But why? It is her habit to serve herself first, and to NOT serve others. What should surprise me about that? Just because I would do it differently doesn't mean I should expect her to change her stripes!
Anyhow, the next thing was SO unlike her that I KNEW it was a plot to get ME to work for her...She brought dishsoap and a towel into Joe's room and said we would wash the dishes we had brought with us. Now, Karen NEVER washes dishes until EVERY dish in her house is encrusted and moldy. So this was NOT some sudden scrupulousness on her part, no, it was her way of getting someone else to wash her dishes, ie ME or Gary. She certainly was not going to wash them, no, I knew that. Well, I drew the line right then and there and told her so. I had paid for her big meal, of which she ate so heartily and well. I did not need to then wash my two pieces of silverware. I had not even used a china plate underneath my paper one! No, I was NOT going to wash HER dishes, no way. She could wash her own dishes or take them home dirty. She had left way too many dirty dishes in my sink at home, after eating MY food for me to feel any discomfort in making her wash my silverware!
This truly upset her, and she said, Fine, then I won't do Christmas. I worked so hard to make this party, and your birthday party as well. "Well, I didn't even want a birthday party!" "And you never thanked me for it!" "Thanked you! What makes you think I was grateful?" And so on...Dunno how much of that I actually said, though, and how much I thought of saying later. I tend to get tongue-tied when angry and NOT say things I think of later, and so often do not have to regret saying venomous things, because I don't think of saying them until it's "too late," thank god.
We traded words after that though, and enough of was that a nurse or two looked in the room askance. I finally quieted down, realizing that I could be heard out in the hall. Joe understood that I was terribly upset, and I told him he had better support me for a change, that Karen would NOT dump him and that I needed him to stand up for me! I eventually had to leave to pack up the leftovers, and Karen had a chance to talk with him alone, so I dunno what he said to her, probably nothing but placating her, knowing him. Probably took her side against me, knowing him...But I...Oh, he HAS to, he is afraid she would leave him in anger if he crossed her. She wouldn't, but he is frankly too weak willed to find that out, and so he placated her, even if he did believe she was in the wrong. He is capable of doing that. Acting one way and believing another. I have seen him do that before. He will act the nice guy and NOT tell anyone how he truly feels, because he knows it would bring about controversy, which he detests above all else. But it makes him effectively two-faced, a fact he may not be aware of. Hypocritical in fact, saying one thing to keep the peace, but believing quite another. That's what a hypocrite is, after all.
IN the end, Karen and I drove hom in absolute silence, which must have been hell for her, who cannot tolerate silence at any time, especially when with company! I on the other hand, drifted into revery and soon forgot I was with her. At home, I simply packed up my cart and told her she had to lock up the back of the car. She had been stomping away down the walkway to the building and this made her have to come back -- HAH! -- so I then wheeled off, ahead of her, and got inside and to the elevator first. With some small satisfaction, I saw the door close before she could get on. I took it straight to the 12th floor.
Paranoia struck this weekend. I wrote the following in my journal: Big Q, will Dr O let me use her intro and commentary if the contract is only with me? It seems they are not offering her any contract. At least they haven't mentioned Dr O in anything so far. And unless she has heard from them separately -- which I doubt -- I don't think she will/ they will. Dunno what to do or think about this. Did I give her the prominence I think I did in the ms? I can't remember! All I know is, SHE considers this OUR ms. Lynnie doesn't, I don't. NO ONE else does...It's MY poetry, years of work. She did the commentary in a few hours, a few evenings I imagine. I don't know how she can think this book is hers in any way...But I worry that in fact she will not let me use her intro without some contracted...something to her! I dunno what to do about that. Does she deserve it? And what is it? Money? Hah! What money?! If that's her concern she is greedy and crazy! But mostly just -- I dunno. I just don't know. What does she deserve? Her name UNDER mine, credited with the intro and the commentary, yes, surely. Of course. But anything beyond that I don't know, nor do I see why she'd want anymore than that! How much credit does she need? This is NOT HER BOOK! She wrote an INTRODUCTION, period. And jotted a few words of commentary that I typed up and cleaned up and made look bigger than they actually were. Very little in the end. Mostly a sentence or two about 2/3 of the poems.
WHAT DO YOU WANT, DR O? THIS IS NOT YOUR BOOK! You have other writings, other books, other projects. Why do you act like this one ever was
"yours" when you ought to admit you know perfectly well that it was ALWAYS only mine. SO you helped select the poems. So you helped me choose and wrote the commentary. You HELPED me put the book together and for that you will get due credit, all my gratitude and all the credit you could possibly claim or deserve. But what else can I give you? What else could you possibly claim? What else could you possibly deserve to get from my book of my poems, dear Dr O...? What? What? What?!
It turns out she wanted nothing at all. I was overwrought about, well, my own imagination and lack of trust and I dunno what or where it all came from, frankly...Paranoia I guess. I sent an email asking Dr O a question I asked only after vetting it with Lynnie, and sending her first a long letter ...which she suggested gently that I NOT send. She thought I should merely ask Dr O first whether she believed she was in fact deserving of equal credit. She gave me a suggested question. I simply lifted it entire and asked Dr O the exact same thing. This morning, instead of answering the email, Dr O called me, sensing my panic, and clarified everything: NO, she never thought of herself as co-author, of course not. No, she wanted no credit more than I'd given her already, "Introduction by M. O." and any money was strictly mine. If I'd wanted to give her any, she would simply donate it to the charity of my choice...She didn't seem upset that I accused her of these things, only supportive and understanding that my paranoia once again had made me seize upon such possiblities and build them up into a real, that is, truly believed-in plot against me. She took it in stride, not the slightest bit fazed, or if she was, not letting on.
I was so relieved, I can't tell you. All weekend I'd been tortured by this, and had told my nurse my suspicions and Lynnie and even Karen...Everyone doubted me, doubted my perceptions, but of course I held to my certainty, because that is the nature of paranoia, and I had no idea I was paranoid, once again, having no clue and no way to test reality this time, until I had a chance to ask a question and get an answer. I didn't realize I was testing reality this time, I thought I would get a corroborative answer! But in the end, the answer I got was much better than the one I expected.
Warning to anyone associated with our group: the following is my response to our prompt this month. Please do not read it in advance of our meeting, as I would like it to be as fresh to you as to the others. Thanks.
For all the rest of you, a word of explanation: The prompt this month was the word COFFEE. As I thought about it, what I recalled was my utter dependence upon Kava coffee while I was a student at Brown, after my overdose as a freshman and my subsequent 5-month hospitalization and 2 year absence. During the time away I had worked part-time, seen a psychiatrist of dubious merit, been hospitalized a second time, and gone to another college for one semester. Now, as the essay (all we are allotted in these assignments is a single page, so we have to make the most of it) as the essay opens, I describe climbing the stairs to my third floor room in the French House, where I lived upon my second semester return to Brown in 1973. I did not want to live there and did not participate in French House life. I was simply placed in an empty double there because it was available, and I had refused my first assigned room, located, to my horror, in rowdy Frat Row. My French House existence was isolated in the extreme, except for excursions to Boston for folkdancing, a lonely experience in itself because I never met anyone there to talk with or dance with, and was treated as a stranger and a loner all year. No matter that I was an excellent dancer, no one had anything to do with me. When I went up there with another woman, a dance aficionada, she talked about herself the whole time, and left me to my own devices as soon as we got to the dancing, not wanting to be seen and/or contaminated by me. None of that appears here, however, only my love affair with Kava coffee, and how it "saved the day" more than once.
COMFORT COFFEE, O, CONSTANT COFFEE
“Forty-three, forty-four, forty-five,” counting the last steps, I dragged myself up to the third floor. A door opened, someone spoke, but I didn’t reply. I struggled with the key to room 3E and safety. The door locked behind me, I collapsed in my cricket rocker. The radio, the one they’d put in the wall, began to churn out “Eleanor Rigby,” just as it did every day when I got home, the invisible people adding their jeers and commentary: I was a poor excuse for a human being, a fat ugly pimple on the face of mankind. I took up too much room. I breathed too much air, consumed too many resources. I –
I weighed only 74 pounds, having reduced my “consumption of resources” to three graham crackers a day, one bouillon cube at each meal and a single package of David’s brand pumpkin seeds for protein. Coffee, on the other hand, and I drank acid-free, instant Kava -- coffee, even though I used non-dairy Cremora in it -- coffee, the single most expensive item in my budget, bitter and caffeinated – coffee was “free”: I was allowed to drink as much of the stuff as I wanted.
Hunger drove me to the pine trunk I had set up as my kitchen. Upside down, it held a hot plate, a single place setting, a tea kettle and a Salvation Army-bought saucepan. What else did I need? Stacked against the wall were several once-opened then resealed boxes of Keebler grahams, which I had toasted extra brown and crisp in my parents’ oven during my last visit home, the only way, in my opinion, they could be made edible. One box lasted precisely one week. To the side, my precious jar of Kava coffee crystals and an extra large container of corn syrup solids and hydrogenated vegetable oil: Cremora. I didn’t care what was in it, as long as it wasn’t cream.
The wall-radio voices yelled at me, “Fatso, hey fatty! Stop eating so much, stop sucking up so much air. More than your share. Unfair.” I slumped, the pains in my stomach making me weak. This meant I couldn’t have supper, not even my usual graham cracker and packet of pumpkin seeds. It was the second time this week they had demanded I go without. Nothing would change it. I knew I had to obey or worse might happen...
Except for coffee. They couldn’t take that away from me. I put the kettle on; the hot plate heated up quickly. Spooning a large teaspoon of coffee crystals into my mug I poured water over them and stirred. Pungency wafted to my nose, traveling the nerves, sending back a message of comfort to my hungry brain. I spooned Cremora generously into the black brew, settled in my rocker, and took a sip. Ah, hot! Then another sip, and another. I forgot my hunger pangs. With cups of coffee, I could forego my puny dinner, though I had craved it as a gourmet his seven-course meal. Right now, I had coffee, bitter as fate but as much as I wanted. It would do. It would have to.
I was the golden girl, Lynnie was right when she wrote in our book that as a child there was nothing I couldn't do. It wasn't fair, and I used to think precisely that: how wrong of god to distribute talents and intelligence and even resources so inequitably. For not only did I have natural talent at just about everything I did -- from writing to piano, from modern dancing to art as well as just about all the academic subjects, but my socio-economic circumstances were such that my parents had the wherewithal to provide me with the opportunities to indulge and enhance them as well. From a very young age, I felt both extraordinarily lucky and grateful for this, and wracked with guilt for having so much of what others lacked. And from as young as fourth grade, when I gave my ten cents for a post-lunch ice cream sandwich to a school mate I judged as too poor to afford such luxuries -- she brought PB and J sandwiches to school every day instead of buying a school lunch -- I was determined to make up for it.
When I was in Brock Hill this fall, I came to the understanding that my profound feelings of guilt and conviction of personal evil may have stemmed from infancy, even from the first days after birth (that is, from being reminded of them again and again over the years). For reasons I cannot fathom, it was continually made clear to me that "Lynnie was the smaller twin and stayed in the incubator two weeks longer than you did." The meaning I was to take from this was that since that meant she was weaker and more frail than I, she deserved my parents' attention and care, the implication, or the conclusion I drew from that being that I did not. That I should be quiet and not bother them, that I was strong and should take care of myself, did not need them as much as she did. That this produced guilt in me rather than anger may be due to some inborn twist in my temperament, but I felt that they were saying that I had caused her to be frail and weak, that I, as the bigger, stronger twin, had somehow taken more food in the womb than I should have, had in fact taken her share...Now, they did not intend all this. I understand this. I think they may have meant for me to believe that Lynnie was weaker and needed more attention than I did, as she was definitely louder and shriller than I. But I don't know that they intended to blame me. Nevertheless, I did end up blaming myself...
So there I was, the putatively stronger, or at the very least stoical twin, abundantly talented and intelligent, and I felt guilty for being, simply for being myself. I vowed that I would use my abilities to change the world, change the inequities I saw around me, help the poor and the wretched, share what I had with anyone who had not. I may have starved my sister before birth, but I would not let anyone else starve if I had any choice in the matter. Why, I would rather starve myself than let someone else go hungry first.
In fifth grade, the year we lived in England, I had a brief episode of foreboding, of warning that trouble lay ahead. I may have written of this somewhere else. One afternoon or evening, I think it must have been the evening, because I was in the chilly bathroom -- which was literally the room where the bathtub was, and only the tub, nothing else -- waiting for the hot water geyser to fill the tub high enough for me to undress and get in. I felt uneasy, anxious, though I would not have used that word, and strange thoughts filled my head, vivid and as certain as if they were memories, though in fact they were of the future. I somehow "knew" that I was not going to be able to do what everyone thought I would do with all my talents and abilities, that I would never live up to my "promise," never marry or have kids, nor even have a job and work as a "lady doctor" as my father used to talk about, nor at any kind of profession. It made me both sad but also worried because I knew I was supposed to do so much, and who would understand if I could not...? No one, no one. I didn't understand why this was so, nor what would happen to prevent my using my talents, only that I would not. And that my parents would never understand...Then the thoughts grew so unbearable that I could not take them another second. I turned off the geyser so I could splash cold water on my head to stop them.
But I soon forgot that experience and life went on and I won the all-school short story contest before we left for the States at the end of the year, so I figured the premonition, if that's what it was, had been a silly fantasy, and nothing more. I was still me, and I was going to change the world. That is why President Kennedy meant so much to me, with his: Ask not what your country can do for you; ask what you can do for your country! I knew he was asking me to serve, asking me to give up my comfortable life to do what I could to make the country a better place, and that he as president was going to do the same thing.
I did do some things: I tutored "inner city" students, I taught ESL, I took in strangers and gave away money and food and clothing; at one point I gave away pretty much my last dime. Remembering how close I'd come to being homeless, I gave 25-35 dollars every month to the local soup kitchen. But guilt for simply being has a way of following you around like a dog's tail, like a body part, and until you truly rid yourself of it, it owns you as much as you own it. Brock Hill thought they'd had me reach an epiphany that might "cure" me, or that's my sense of it. Little did they know I understood that much all along...and it, the understanding, never did me any good. Knowing where a feeling comes from, and putting a stop to the feeling seem to be two different operations, I dunno why. Or else, because I take Inderal -- propranolol -- and do not have access to emotional memories, I cannot truly connect or feel my feelings, past or present. That's what I really fear. I want to stop taking it, even if I get akathisia again. If my BP goes up, well, there are plenty of other meds for that...But Inderal is known to stop "traumatic memory" from forming, and I believe that it stops more than that. I believe it stops ALL emotional memory from forming, and hence may hinder memory in general. I will see, because I am going to slowly cut down on my dose. It's the only solution, or it is A solution, a trial to see if there IS a solution.
Enough of this. I'm sorry if this is disjointed, each paragraph an entity unto itself, little connection between them. That's just how it is today. I'm scattered, and at loose ends. My ride never came today, so I didn't get to see Joe and talking to him on the phone is a distinctly unsatisfying exercise in frustration for both of us: Joe saying yes or no by hitting a bell and me trying to talk and ask yes or no questions. As I said, It is singularly unsatisfying. This Saturday is my birthday. I will be 55 years old and while I do not care so much, it does feel old...We will have a joint party with Gary, who is 62 tomorrow at Joe's room in the hospital. Then we will have T-day in Joe's room next Thursday. Two "parties" in a week is too much for me. I'm already dreading the holiday season dead upon us! Well, I've said enough, so TTFN and apologies for not proofreading this till Tuesday.
Whirlwind of a day and probably should not have too many like it. But it felt good that I could pull it off successfully at least this once. Here is a blow by blow of how it went. Warning: this may be the most boring post I have done yet, or not...Read on at your own risk.
The morning nurse was Don, who usually comes on Sundays, not Elissa my regular one, and he woke me by coming more than an hour earlier than Elissa does. I was quite groggy. I had taken the 2nd dose of Xyrem at 4:40 a.m. thinking I could sleep till 9 the next morning instead of only 7:45. Don gave me an amazingly painless IM injection of Bicillin, in the arm no less, for which I am eternally grateful. He is now my official Injectioner. No one else will do. After he left, though I wanted more sleep, I stayed up, knowing that if I went back to bed after taking the morning meds I was apt to sleep till noon, even with an alarm set and today was my turn to see Joe. In fact, my ride was due to pick me up between 11:30 and 12:30.
Staying awake was a problem, though. I sat in my recliner to read THE QUIET ROOM, another memoir of “madness” by a woman with schizoaffective disorder (written in the mid-1990’s – some of you no doubt read it long ago – possibly to be discussed here when I finish it) and found myself dozing off despite every effort not to. I needed coffee, I decided, and quick. I poured boiling water through the coffee in a filter, Melita style, and soon was caffeinated enough not to have another sleep attack like the two I’ve had within the space of two weeks (the scary ten-second-warning-before-I-crash and-fall-asleep-right-where-I-am kind). By 11, I had washed a sink full of dishes, read about 30 pp in the book, read and written who knows how many emails, and changed my clothes umpteen times, wanting to look good for Joe but in the end settling for all navy blue: a navy “denim” sweater and “new” jeans bought at Goodwill. I packed a few items I’d made for Joe: a scrubby sponge and a pencil with sponge material wrapped around it for thickness, with the scrubby material glued to the tip, plus a piece of rigid clear plastic with the alphabet printed on it in big black letters.* I added my cell phone and book and was just finishing up when the intercom buzzed. My ride was downstairs.
*Explanation of these items: Joe cannot turn the pp of his magazines, his fingers simply can't grasp them. But the plastic mesh on the back side of a scrubby sponge will. If you take one dry and brush it against the page, it will pull it away from the others. If you don't believe me, try it. I found this out by trial and error, in a desperate attempt to find anything that would work in a low tech way. The built up pencil is just another method of using the scrubby mesh to do the same thing, in case it is easier to manipulate a thick pencil than a flat sponge. The alphabet on clear plastic was meant to imitate an Eye Link, or at least what I believe an Eye Link looks like. What I know you do with one is this: Joe would look at a letter of the alphbet on the plastic and I would meet his gaze. Because he is looking at a letter, and I was looking at his eyes, I would be looking at the same letter. So I would know the letter he wants. That way he could spell by looking alone, and I could read what he wanted to say. Pretty nifty, eh? The ALS Association is supposed to send me one, but it hasn't arrived and hasn't arrived, so that I think they may have forgotten...I am beginning to think that the same woman, the nurse there who hates me may have gotten back from her vacation and decided to torment me again, despite JOE's needs...
I get 12 round trip rides anywhere in Hartford County per year through the Medicare Advantage plan I joined this August, and since I didn’t start using them till late October, I have enough rides this year to see Joe once a week and even get to some of my own medical appointments without having to drive. Come 2008, I do not know what I will do...But I’ll cross that bridge you know when, right? In any event, today I did have a ride, and even though I was forced to listen to Bill O’Reilly of Fox News fame spout off about the Democrats and their disgusting refusal to fight wars, I was glad of it.
Joe was sitting in his wheelchair when I got there, in a hospital johnny but in light sweatpants as well. He looked terribly distressed. Since a young woman standing next to him held the suction wand I assumed it had to do with the choking secretions in his throat once again. There must be some solution, I thought, this is no way to live. I asked if I would be in the way if I sat nearby and she said no, she was simply waiting for the respiratory therapist. Joe pulled the air towards him, waving me in.
But it was clear that Joe needed more from me than mere sitting. He was so troubled by uncontrollable drooling that he was unable to wipe away or prevent in the first place that I took up a towel and stood next to him, letting him chomp down on the fabric to soak up his saliva when he needed to. I would wipe it away if it escaped his mouth. (Oh dear, I apologize if I am grossing you out...I forget that you have not lived with this or things so much worse. And there have been plenty of those. If you cannot read this particular paragraph, skip it. I will confine these matters to one ‘graph only. So simply jump ahead to the next and don’t worry about what you may miss. It is mostly important only to Joe, and to me.) This was only the most obvious of the problems. Less so, but even more troubling and dangerous (“dangerous” since he calls it “choking” though I don’t understand how or why: he is on a vent that “breathes him” through his neck, so why are secretions in the back of his throat “choking” – or is it that they give the sensation of choking, when he would still be “breathing” normally? That is the only explanation I can come up with: his brain gets the message that the back of his throat is closed, therefore he “is choking” and “can’t breathe.” Naturally, panic ensues from this. But because his “body,” so to speak, is getting plenty of air through the tracheostomy, he goes right on living nonetheless...) More troubling to him are the sticky thickened secretions that collect in the back of his throat and need to be “vacuumed” or suctioned out, much as a dentist’s assistant suctions excess water and saliva during dental procedures. Secretions must be suctioned regularly from his windpipe, his trachea, too, or his airway could close and then he truly could not breathe.
Today, when I came in, he was having trouble with all three areas: oral, throat and trachea, and seemed quite discouraged. But when the respiratory therapist (henceforth RT) left the room briefly to answer a page and I asked him if it was still “worth it” he nodded his head emphatically: Yes, yes, it was, even with all the unexpected difficulty living with a vent presented, yes, it was worth living like this. I nodded; it was necessary to ask the question from time to time, but I understood his answer and would keep my word: he would be resuscitated under any and all circumstances. It occurs to me, however, that this may not be so desirable as he believes, and that there are degrees he may not have considered. For instance, does he want to be resuscitated if brain dead or damaged? If paralyzed by ALS and blind? If locked in? Probably I am not even beginning to think of the many other ramifications of an across-the-board order to resuscitate...Though, of course, in an otherwise healthy person, it is assumed, so why not in Joe’s case, since he wants to live as much as any healthy person does. Because he is NOT healthy? Because if he does not have a healthy brain, what does he have? And how does one reach him, if his brain does not function properly. I’m sort of surprised that no one thought that his having schizophrenia (let alone a touch of Asperger’s) disqualified him from having a vent, or at least from making that decision on his own. I’m very glad they did, but it sort of surprises me that no one tried to fight him, as there were many who were against his decision and could have made an issue of it. Thank god he has been stable for many years and that this is a free country...
It was gratifying for the first time to have Joe tell the nurse that though he was tired by the time I was leaving, he felt better than he had when I came. I know I didn’t do anything to bring this about. It was mostly that the suctioning worked for once, and so more oxygen got to his brain, which cleared up his thinking and relieved his mental and physical distress. But all the other visits had felt like disasters because he had been under the weather each time, and totally uncommunicative, too tired to “talk” and too troubled by— phlegm to discuss anything else. While he had been glad to see me, I think what he’d really wanted was the RT’s fulltime attention, and wanted that more than he wanted me at the moment. I don’t blame him now. Of course he had, who wouldn’t? I understood even at the time that he felt like crap. But when I’d left I also felt empty and useless, as if my visiting meant nothing to him, that Karen with her competence in the sickroom had finally managed to mean more to him than I did.
I know now that she does not, not in his heart. He knows her competence and her help come at a price. But we both agree it is a price in dollars well worth paying, at least for now. (*One other word about Karen. She really does know how to navigate “the system” and when I say that I mean just about any system. First of all, the “health care system” whether in its private aspect, like insurance, or public and private together as in hospitals, or purely public, like Medicare benefits. But really she is a whiz at cracking any system or organization: corporate, educational, financial - you name it and I bet she could find out how it works in no time, and then be able to, say, join a cocktail party of insiders and seem quite at home. She has an amazing ability with abstract concepts and organization. And she is very generous when it comes to sharing her time and ability: she uses it on others’ behalf as often as she is able to, enjoying it I think, also knowing that it is her forte, a skill so often lacking in others.)
So. I left Joe when he and I both of us began to tire. Outside, I called the agency just as my ride was then arriving at the hospital, exactly on time.
Home again. It is 3pm and the sun is low in the sky. I haven’t eaten all day but there is no time to stop. I have to call Lynn and Cy because they have been alone all day and god only knows if Lynn got her meds or anything at all to eat. Cy answers the phone and tells me to come on over. I figure something must be wrong or he wouldn’t invite me with such alacrity, but I call back at the downstairs door, asking if I can stop and get anything for them on the way. No, nothing. They have everything they need. And so I “race” over, precisely, even slavishly, staying at the speed limit as I always do because the cops watch me, monitoring my car for any lapses. Occasionally a car will follow me for a time and then I know it’s a cop; but when it turns or pulls into a driveway, it is clear that the cop has gotten bored with my perfect speed limit driving and won’t bother me again for a while, though there is always another who will. Today, there are three, but they do not persist for long, and I have the long uphill stretch of Highland Street to myself. I stay at 35mph anyway, come to a full stop at the stop signs, and reach Cy and Lynn’s exactly 14 minutes after I locked my apartment door. Perfect timing.
Except that there is another Toyota Corolla in the driveway. So they already have a visitor? Why then do they need me? I’m a teensy bit irritated...I don’t really mind coming over, but if I’d known someone was already here, I might have taken a bit of time to—Oh, what the hell, Lynn will have soda and tea and food here. She loves to feed me. What difference does it make where I eat, for heaven’s sake?
I let myself in and a short, white-haired woman greets me, introduces herself as Helen. I tell her who I am. She says she knows. I enter the living room and give Lynn a gentle hug. She is seated in her recliner, her broken arm in a brace, cannulas (sp?) of oxygen in her nose. Lynn tells Helen that I am the one who “wrote that book” and Helen responds that she understands that, she read it, and she thinks I’ve lost a lot of weight since “those pictures were taken.” I tell her that I was taken off the drug that had put on so much weight and I now take a drug that gives me no appetite at all. I recently started on the other drug too, but at a fraction of the dose. She mentions that she would love to lose weight too. But I do not know why as she seems perfectly well proportioned and quit trim. I cannot guess her age except that I know that she and Lynn have been friends for “many years” and her hair is snow white and...Well, now that I think about it at one point, talking about the many friends she has lost, she warns me, “Pam, don’t get old, it is not worth it,” so I would venture to say that she must be in her seventies. Younger than Lynn at 81 but old enough to call herself “old.” (My response to her comment was an acerbic, “I’d prefer getting old to the alternative...” but maybe I missed the point?)
Eventually, Cy goes to get Lynn’s prescriptions, Helen and I start chopping ingredients for an omelet for Lynn’s dinner, then Helen leaves for home and I finish cooking enough for both Lynn and Cy. I am at first rather shy about preparing food for such a good cook as Lynn is, fearing that I’ll make something completely inedible. Then I realize that both of them are so utterly unpretentious that an “omelet” doesn’t mean the fluffy folded exquisite dish that cooks on television whip up with such aplomb, but merely sauteed peppers and onions, with beaten eggs poured over them, slow-cooked till done. As a treat, I melt muenster cheese on top, the slices arranged by chance in a star and Cy’s comment is: “have to be artistic, do you?” But the real compliment, after I bring a plate to Lynn in her recliner, is when he, who has said he isn’t eating, that I should have his portion and eat with Lynn because he had a late lunch – when he asks, “Where’s mine?” I don’t hesitate. “It’s coming,” I say, grinning to myself. “I’m giving you the rest, right on the plate I served it from.” And after bringing him the remaining three quarters of the omelet (Lynn barely touches food, just likes to have some on her plate), I bid them both good night and slip out the door, feeling like a million dollars.
The drive home is difficult though. At first I forget to put the lights on, because the car has daytime running lights and those fool me into thinking the full headlights are on. It’s then I remember why I usually try to get home before four in the winter: I can’t see well in the dark. It’s hard to drive even at the speed limit now and properly see the road, especially when there is on-coming traffic. I avoid any busy street on the way home, unless it is wide and well lit. Luckily, the police do not bother with me in the dark. Maybe they can’t see me, or maybe they know I drive well below the speed limit then perforce. Just before I reach the main drag, I realize I don’t have any food in the fridge. I have to stop at Stop and Shop first. Oh no! But I do it, folks, yes I do. I race through the friggin’ store, paranoia or no, talking up a storm but aiming to get it over and done with for a week in less than fifteen minutes (all except for produce which I’ll buy at PriceRite). If I take any longer than that it is because the cashier is slow. But actually she is not, I am: I cannot find my Stop and Shop card, and then my debit card. Still, and I cannot believe this, there is no one in line before me. There is no wait. I get through in no time and am home ten minutes later at exactly 5:56pm. My day, at least the part of it I must spend with and for others, is done. The rest is mine, and I can do with it as I please.¬¬¬¬
FYI I didn’t do very much, alas: I did eat. I made a “pizza” with spaghetti sauce and shredded mozzarella cheese on naan bread with little bits of green pepper on top and cooked it in the toaster oven. It came out pretty good, good enough that I ate the whole thing over the course of the evening: 500 calories worth, I estimate, so that helps the grand total. What else? Not much. I talked with Karen, which took up too much time, unfortunately, and it was necessary as it concerned Joe; and I was talked at by Josephine, of whom I am quite fond, thought I get irritated by this habit of hers. I tell her so, but she never gets the message, spoken loud and clear though it is...Otherwise, writing this was my major accomplishment, and I have a feeling it was, in the end, not worth my writing, much less the time.
First the Comet: Comet 17P/Holmes, discovered 100 years ago but believed to have gone extinct, astounded sky watchers on October 24th. It is thought that a meteor may have impacted the comet. Just the day before, the puny comet had been 25,000 too faint to be seen with the naked eye but since the 24th it has become the brightest comet visible in the past 10 years, bright enough to see in the still bright light of the waning Hunter's Moon. You can see it in the northeastern sky during evening hours and if you spot it in the northern hemisphere you can keep watching it all night. It is a bit tricky to see it, as it has a fuzzy ball appearance, not the crisp twinkling of a star, but it is as bright as the brightest of stars. Once you see it, they say you will wonder why you didn't see it immediately. Try a pair of binoculars if you have them; they really do help. See this web page for a picture of what the comet should look like under ideal conditions, without the ambient light so many of us fight, living near or in cities and towns (or even in well-lit suburbs). http://
I woke last night around 3:30 a.m. to the sound of 5 or 6 enormous firetrucks racing up to the cul de sac that is ESquare, our building, a subsidized "elderly and disabled" highrise. No other structures "live" on our street, except perhaps a Best Western hotel, which may or may not share an E Square address. (That's not at all clear, as it faces a different direction, though the driveway comes in from E Square...). Anyhow, what was clear was that the fire, wherever it was, was somewhere in our building. No alarm klaxon was sounding, not yet. I knew it would not sound at all unless we were going to be asked to evacuate. Few were up at such an hour; why wake people with the alarm to warn them not to use the elevator, to stay in their apartments, when most were already fast asleep?
I was not, however. The first dose of Xyrem had worn off enough that the sirens woke me. I proceeded to make a quick inventory of what I'd take with me in the event of an evacuation and to gather it together. Not much was rescue-able, given Eemie: I'd take Eemie, of course, in her carrying canvas bag; my small purse with its necessary license and banking card and insurance cards and money; as many (ie a few) pills as I actually had on hand (the rest being locked in an overweight Sentry box, which was made of concrete and presumably would survive a fire); my laptop, of course and the iPod, because it was tiny and portable and valuable; cellphone, ditto; but I stopped there, realizing there was nothing more to do but simply leave when the alarm came, to hell with saving anything but our lives. I could start again, nothing was so important I couldn't repeat it or do it again and better. Even the poetry book -- Femto has a copy of most poems, and the others are on my blog in cyberspace in one form or another!
So I calmed myself and went to look out the window. There were 3 huge trucks with the expandable ladders, but I didn't think any were made that could reach to the twelfth floor even so. There were two Emergency Rescue trucks and a whole squadron of firefighting men and women in their battle regalia...But why were they outside, not in? And where was the big fire they were all in their get-up to fight? I suspected that once again, someone had put a frozen microwave dinner in the over -- an addled elderly widower perhaps, or someone who wasn't sleeping well -- and the apartment had filled with the black smoke of burning plastic, setting off the implacable smoke detector. When the resident could not get this to stop and the smoke became obvious to other residents nearby, well, a cascade effect took place and somewhere along the line 911 and the fire department were called. Now it was mostly what our completely competent building superintendent calls a "smoke situation" and no fire, hence little need for 5 firetrucks and two dozen firefighters. The trucks executed a difficult about-face that took out some flowers planted at the curb and sped away with most of the firefighters. I sighed with relief: false alarm. Someone's apartment was no doubt a mess and one hallway must smell terrible, but all told just another false alarm. I took my second dose of Xyrem at 3:40a.m. and was asleep by 4:10.
The next evening I proved myself no better than that elderly gentleman with the addled brain: I set some wheat berries in three times their volume of water on the stove and turned it on high. I intended to turn this to low once a rolling boil started. I figured that would take 8-10 minutes so I went back to my computer to work on my Praire Vole poem, which I was rewriting for Cy's birthday (never did get it done, but worked on it mightily). Sometime around a half hour later, two things happened: I looked up to see the room was suddenly full of smoke, smelled the smoke, and the smoke detector went off. All these things occurred at one and the same time, not as a consequence of each other, I swear. But they led to my leaping up in horror: I forgot the food on the stove! This was now burnt dry and black, almost in flames...No, not near flames, I don't think, since the wheat berries had been in a good stainless steel pan that could take the heat, and nothing was nearby that could "catch." But neverthe- less, the pan was clearly blazing hot and the food inside charcoaled and smoking. I snapped off the stove, grabbed my thickest potholder, seized the pot and plunged it under running water. Steam exploded in my face, with a stench that made me gag. I dropped the pot in the sink and went to take care of other matters.
Next thing was to get the smoke detector turned off. I ran to open the windows, the two that would. Then I grabbed the fan I keep by my bedroom door all year round-- for white noise -- and leaned it back against a table, aiming it directly at the smoke detector anchored on the wall near the ceiling. I crossed my fingers and damned if it didn't work but good. The screeching ceased at once. I left the fan on, wedged in place where it could keep the thick smoke away from what I felt now was little more than a nasty little tattle tale . Possibly the little people were involved with this -- the tattle tale business would be their thing -- without my being aware of it due to my distress. Since the pot was a Lawyer under indictment and the lid an irresponsible Clown, I think now that this was indeed the case...
In any event, I had noted that the smoke was so thick that I could not see across my small apartment except as if through heavy gauze. Where was it going to go, and more important, when? I could not stay here with the air so acrid for long. But where else could I go? I did not, definitely did not, want to hang out with Karen, even if she would welcome me...and I knew she had gone to bed early. In desperation, I tied a silk scarf over my mouth and nose and made sure there was a tight seal so that this awful smoke had to pass through some sort of filter first before it entered my lungs. Then I turned on the A/C and finally, I pumped the hall door several times, trying to push as much smoke out there as I could. This did help, thank heavens. And the A/C rather quickly exchanged the air, filtering it as well, so that in about an hour all was back to normal, though today the apartment still smelled, well, "awful" to the morning nurse, and "like popcorn" to the evening nurse.
I learned two things from this episode: 1) Never leave food cooking unattended, or at least without a timer on to alert you when it is ready for your attention. 2) You can clean even burned to a crisp stainless steel by boiling dishsoap and water in the pot for 20 minutes then leaving it for 3-4 days.By that time it should wash off with a nylon scrubby. Some people swear by wire mesh to get this grunge off; others say that this leads to scratches and lines in the steel, which cause food to stick and burn more easily. I suggest that one err on the side of caution, and use a plastic wire mesh to scrub stainless pots. It seemed to work well for me on the burned lid (after I "cooked it" in dish soap and water). I am still waiting while I soak the burned pot a few days but I expect a nylon scrubby will do for that just as well. Note: other solutions to burnt pot syndrome are: soaking the innards with full strength bleach for a day then scrubbing; making a paste of baking powder and vinegar, applying and leaving that for some time then scrubbing it off, hopefully along with the burnt-in blackness. For other solutions I'd go to HTTP://WWW.ASK.COM and type in search terms like BURNED POT CLEAN or REMEDY or RESTORE.
I am surprised she remains my friend after all the grief I've put her through, all the baseless accusations, however paranoid, I've lobbed in her direction. "In her direction?" Hah, most of them I've batted square to the first baseman who tagged her out the moment she arrived. She is always out in my book, always guilty of the worst possibility, never given the benefit of the doubt, let alone allowed the grace of good intentions or granted gratitude for things well or freely given. No, in my book (and I fear in Joe's most inner unspoken opinion...since he judges her over-spending harshly and equally her liking for information on movie stars and up to date fashions, all vapid to his way of thinking), in my book she is a thief, a liar and a cheat. In that order, or was quite recently.
We moved Joe from his 10th floor apartment in February to an 11th floor one opposite Karen's and just beneath me. That was when I discovered several large containers of "white" change that he had collected. It must have taken several years to accumulate so many quarters they filled a large mayonnaise jar, and nickles and dimes to fill a 3 pound coffee can. I could not even begin to estimate the total worth of it all, but surely it amounted to a hundred dollars at least. I remember this change collection vividly, having stored it overnight in my apartment, not wanting the movers to be tempted as I'd been warned could happen.
Well, now Karen and Gary are clearing out Joe's apartment for good. They started while I was at Brock Hill and continue on into November, paid to do so by Joe, as well as being paid in that they can take largely whatever they want in the way of furniture and items that Joe doesn't want or hasn't bequeathed elsewhere. He did make sure that I received items that I'd bought him myself, but I wanted precious little, having just about everything I need already. I had bought him a leather recliner once when I'd had the money (when my former long time ago boy friend died) but I didn't want that, so we gave it to his cousin, a nice guy and someone we thought would enjoy it. But I wondered what they would do with Joe's money. It was his and I knew that Joe was funny -- frugal to a T -- about money, at least with most people, though never with me. I wanted to make sure that he did get the amount that the change represented, or that at least it was used for his benefit. But when I looked, the change was not where we had put it. Most of it was gone, only empty peanut butter and maynnaise jars were left!
My immediate reaction, absolutely immediate, was: Karen took the change, she had to. She was the only one who chronically was short on money, had the motive and was "evil" enough to do so. Karen was obviously the guilty party. I knew Gary never spent any money, or as little as possible, his luxuries being Meals on Wheels and Delivery Water (the large bottles brought in with a dispenser). Otherwise, he seemed to have little interest in buying things, unless they were a deal and/ or he could get them cheap or for free with coupons. But Karen was extravagant, and chronically overdrawn. She got much more money a month from social security than I did, but at the end of the month was surviving on pasta and hard boiled eggs, or else went to the local food pantry, that's how broke she was.
It's a long story that I won't go into, except to tell you that in the end, a week later (due to Joe's inexplicable failure to explain) I learned from Gary that Joe himself had laboriously rolled all those quarters and exchanged them, on the days off that we thought he had spent doing nothing, resting, thinking. He had actually driven himself to the bank, when we thought he had stopped going out by himself...I did doubt this for a while, believing that Joe might be covering for Karen, needing her assistance as he still does. But it makes sense. As Gary points out, what self-respecting thief leaves the empty jars there after stealing the change???
I apologized to Karen, explained that my chronic assumptions about her were again proven wrong, and she, accepting of me as always, took me back with grace and good humor, though not without some dramatic comments about how she'd almost been hospitalized she'd been so upset. Just about as "almost" as I'd "almost" gotten into Hampshire College (ie I was wait-listed but never did get in).
But something is wrong here. I do not usually assume that someone is a pathological liar, not even after being burned by two of them (separate occasions), and knowing that one had been next door to me in the hospital, stealing clothes from others' laundry with impunity...Something is wrong, and it is not simply that Karen is the person with whom I have the most contact, which is how I explain my paranoia to her. No, there is some other explanation for why I keep going back to that well of distrust, keep returning to my assumption of her fundamental untrustworthiness. But what?
It came to me the very next day when Josephine came over to help me clean up my apartment. Karen suggested that Josephine might go with her to a musical at the local theatre for Broadway plays. THey would have "box" seats at a low price for the handicapped, Josephine going as a companion to Karen. Jo then asked me to come along too. She really doesn't care for Karen, I know, and wanted me for better company. I know now that I had a right to ask for some time to "think it over" but at the time I believed I had to make a decision then and there. Panicked by this, I did not know how to say No to a friend asking me to rescue her. So I agreed, though it was $40 for a ticket to a musical I have no interest in seeing. ("Wicked" is about how the witches in the Wizard of Oz became the Evil one and the Good one. Sounds singularly boring to me..) But the thing is, to get THREE tickets Karen thought she'd have to lie and call TWO of us handicapped physically as the seats involved are for the "mobility impaired" not merely the disabled. She had it all planned out, the lie she would tell, it was all rehearsed. Even though it turned out not to be necessary, still the very idea bothers me.
Now, this seems to me to be emblematic of the problem: Karen's willingness to lie when it is convenient, even when it is not truly necessary. She wants what she wants and won't take No for an answer, so she lies to get a Yes. It's not as if it would kill us if a third person couldn't go to the theatre...Or had to sit in the more expensive seats. Or if we had to ask for a special pass to have three of us sit in the "box" seats (They aren't even truly the box seats that Karen lured Josephine in with, but merely a boxed-off section, way in back on the first floor, high enough to see from but not true box seats.)
She feels she must lie, another example, about the ten year old glass top to her table. She wants to upgrade to a larger table, and the glass is in perfect shape, but she doesn't want to pay for a larger top. She figures she will lie to the store and tell them she just bought it (paid cash) and it doesn't fit so she wants to return it for a larger size...I realize that this is actually good practice, recycling. But that is not her motive. She could give the table top away and still recycle. This is a lie to get away with not paying for a new table top, and while noboy truly suffers, it is cheating and lying in a way I find distasteful. And I think my mind extends from there to "If Karen will do that, she might do anything..."
Now, Karen, when I confronted her with this, said that actually there is a hard line drawn between where she would lie and where she would not. She would never lie where it affected others or where it truly mattered. But where it's a matter of mere convenience, why not? She grew up being taken advantage of as a handicapped child, and learned she had to lie in order not to be treated like a second class citizen. Now she was only doing what she had learned to do so well, and it served her just as well now as it did then.
Maybe, maybe not. But it makes me, I believe, so distrust where she draws the line, IF she draws the line, that I am paranoid around her. And if she cares about that, she needs to mend her ways. Though it may be too late for that. It may be that I have "pegged" her as a liar, which "fact" it may be impossible for me to unlearn. More's the pity, because Karen does have enormous patience and great social skills and could be a good ally, for all her other faults, if only I could overlook them as well as she does mine...
Oh, Pam, talk about cheating. You wrote this on the 5th but are putting it up as if it is the 6th, all because you have something on the 5th already and you want to get credit for both days...SNEAKY!!!!!
I received this email from the website algore.com. The contest you are asked to vote on consists of videos, so it is relaxing and fun, though the entries are many. I thought some of you might be interested and so I offer it to you in the spirit in which it was offered me: hope that it provokes thought even as it entertains.
The Alliance for Climate Protection challenged people from around the world to make provocative ecospots -- short video messages that inspire people to get involved in solving the climate crisis. Hundreds upon hundreds of ecospots were submitted. George Clooney, Cameron Diaz, Orlando Bloom, Rihanna and the rest of the judges picked the semifinalists based on which were the most inspiring and relevant to climate change.
Now you get to tell us which of the semifinalists' entries inspired you the most by picking the winners of the “:60 Seconds to Save the Earth” Ecospot Contest. Vote now at:
The top four ecospots as chosen by you, the community, will be featured in the Alliance's national campaign, broadcast internationally on Current TV and showcased on MySpace's Impact Channel. Choose carefully because this ad is crucial to the Alliance's effort to change the way people think about global warming.
The grand prize winner gets a Toyota Highlander hybrid (if the winner is a US resident) or a Toyota Prius (if the winner is a UK resident). Three finalists receive prizes from Sony, and 19 runners-up get T-Mobile Sidekicks.
Vote now to tell us which ecospot is the most inspiring and relevant to addressing global warming.
Voting ends at 12:01 pm PST / 3:01 pm EST on Friday, November 9th. So get the word out and encourage others to vote. After all, you can change how people think about the climate crisis by spreading the word.
Not a very good one, but it's a trying to come to terms...
Summer and Fall by the Reservoir
In summer, in too much pain for weed-pulling
my surrogate mother at 81 shears me blooms
from the overteeming garden, lapis balloon flowers,
fiery ladders of lilies, so many buds of flowers that last
only one day each, but enough they’ll be on display
a week if I can keep them. I race home, my car
broiling, mayonnaise jar with flowers in reservoir water
wedged behind the seat. I’m thinking I can stave off
death if only I drive fast enough and suddenly
I don’t know what or whom I mean: flowers or friends,
my family these past twenty-some years, and me
still too young to lose them. Though flowers return
each year, I think this winter will be Lynn’s last, my
first in this town without her. My next visit is only
Thursday away but I’ve no more duties, no mailing
the Friday Shabbat message to the grandkids,
nor our weekly lunch, since she has given up eating
for Ensure. What matters, she asks, if she smokes?
Life has become what it is, too much with her,
her powers spent like her last dollars. If only Cy
did not cling so, afraid to lose her - the life of all
his love in the world - to the dying she must do. I
too would cling, but for my lack of a right,
the lack of any claim – for in push coming to
shove, I’m just her daughter in quotes, demurring
to the wisdom of relatives, who powwow
without me, trying to solve the unsolvable:
Lynn dying, by will, by degree, mind and body
in a duet of decline even as the year pours itself
towards December. And the poem I write goes on
as it has to despite my uncertainty and fear,
like the swans on the banks of the reservoir
that brave the chilly water so late in the year.