WAGblog

Update 4/30

Forgive me if there are a thousand typos in what follows but I am too tired to proofread and correct this. PW

Had an interesting talk with Karen today while we were both making jewelry, which I taught her to do. We were discussing Joe and I said that actually I didn't want to go out to his mother's apartment with him and Karen to have lunch at a big restaurant on Mother's Day just to keep him company and rescue him from his mother's chattering. I thought frankly that he saw his mother all the time and didn't need me to rescue him and I deserved the day to myself, and to spend it with my own mother if I wanted to. At this quite candid admission, Karen smiled and said, Yeah, I know what you mean. I don't feel like going all the way out there to babysit his mother, and it's not even a very good restaurant! I would be happy to drive you to see your mother though. Would you like to do that?

We started talking then more honestly about Joe and came to the conclusion that he wasn't giving either of us quality time, that the only people he treated to his famous smile were the nurses and social workers and respiratory therapists who came to see him. When they arrived he would turn on his charm, but as soon as they left, we got the sighing and down faces and the grumpiness...Now, it is understandable that he gets down and grumpy, but he should be talking about it with those who are supposed to help him with it, not playing the happy saint with them, then treating us to his rotten moods. Karen doesn't get any more smiles from him than I do, except that one time she forced him to take her out to dinner, with his computer in tow, at which time he actually lightened up and seemed to have fun for once.

Part of it is his complete unwillingness to do anything for himself, and part of it is our willingness to do it all for him. He complains about fatigue and we say, don't worry, we'll do it for you, instead of prodding him to do XYZ anyway. He is losing all sense of personal responsibility and as Karen has had to tell him, we are not his personal slaves, and as I have told him, we are not his maids, we do not clean up his messes, not without being paid. (When I told him that, lo and behold, suddenly he became able to pick up after himself...anything that threatens to become expensive motivates him! BD)

Tomorrow, Karen is taking a day off, and I am doing it all. But first we are getting Joe, whether he likes it or not, to take us out to lunch and bring his computer with him so he can talk with us while we eat. Then we are going to tell him about our decision regarding Mother's Day ie that I will go with him only if his mother comes to our building and we have lunch some place very local. That is, I will help him out with his mother, but only if it costs me only an hour and a half of my time. Otherwise, I will make plans with Karen to go visit my own mother at the shore. After lunch, I'll drop Karen off at home to do her thing and tell Joe he has to come with me to do HIS errands, pick up his scripts, his electric can opener etc. That I am tired too, and have little stamina but am going out anyway and so can he. I dunno what else to do. The fact is that he plans this Thursday to go to the ALS support group for an hour and a half, with Karen and me in tow, then see his therapist immediately after that, then drive home, and then that evening attend a Democratic Party fundraiser! If he has no energy or stamina, how the hell does he think he can do all that? And if he can do all that, he can certainly go to a restaurant, then do two errands. He won't even have to drive. I will!

I am not growing away from Joe, nor Joe changing in his feelings towards me. Just a couple of weeks ago, before the Storycorps interview he told me he believed in love at first sight and that I was the love of his life. I know that Karen is no competition. He only spends time with her because he has to keep her happy so she will drive him to the Clinic. He finds her demanding otherwise. But you know, she may be pushy and demanding overall, but in terms of wanting something from Joe, she deserves it, we both do. We deserve some sense that he knows what we are giving him and giving up to do so, some appreciation rather than his assumption that of course anyone would do it. Most people would not. NONE of his many other friends have so much as offered to spell us in fact. No one has offered, out of all his many relatives, to help out in any way and when they ask him what they can do, he simply tells them, Nothing. As if we can do it all and don't need any help!

Disney is a done deal, which I will look at as an adventure and try to enjoy as best I can. Karen keeps trying to get me to commit to an evening here or there and I simply say, Make any reservation you want to, but I cannot say what I will or will not be able to do at night. I'll just have to wing it, see how I feel.

Luckily, Lynnie built that into her discussion with them, the fact that she and Sal often let me skip dinner or eat in my room, via room service or take out, while they decamped to a restaurant, knowing I simply needed the time off and privacy. So I was able to tell them that I might not join them for dinners, even though they were at fancy restaurants with exotic atmospheres worth experiencing. I think by then I'll be spent and want to stay in for the evening, unless we really do split up for the afternoon and I get enough private time then. Otherwise, I know that dinner won't be simply dinner but some entertainment and a stop along the way and soon it will be three hours before I get back to the room and I'll be exhausted once again. Plus, I hate fireworks! No, I don't hate them at all, I just don't want to be out that late...So I will try to post from my hotel room, which will give me something to do and be something to write about, plus it will provide an anchor for me, should I get into trouble. I may not be able to write email, but I can at least get comments and write commentary or posts here.

Difficulty Connecting

Today I want to talk about something I find difficult to formulate in words, largely because I don't know exactly how I feel or what the problem is, except that I know there is a problem.

Joe and I can't seem to connect the way we always used to. We don't have fun anymore or any lighthearted times. I feel like he spends all those times with Karen, or expends all that energy while with Karen, who, living across the hall from him, has appropriated his apartment as an extension of her own, and is over there half the day. She goes with him to Democratic Town Committee meetings (which don't interest me) and they go out to dinner beforehand (he can still eat strained soup) where she says he jokes and keeps her laughing via the computer. But when he comes to see me, or when I go down to see him, he never jokes and has barely anything to say. Just seems exhausted and uninterested in talking. Now, I know that Karen is a talker, and very sociable, and knows how to keep a conversation going and how to talk and get people to interact, and she probably carries the conversation with Joe until he responds, but he must respond, he obviously does, if he jokes with her and gets her laughing. With me, he doesn't even try.

Now, I could feel okay about this, feel that he is more real with me, less straining to be "up" and "acceptable" with me than with Karen, except that as she boasts, he talks to her about all sorts of things; she knows all sorts of things I don't, especially from their trips to the Clinic (which she lords over me, and has forbidden Joe to allow me to go with them on). And she claims that he talks to her about how much he is troubled by not being able to eat or talk and so forth whereas he hasn't said anything about it to me, even when I ask, except that it is difficult but he doesn't suffer, ever. I have talked with him about end of life issues, about the ventilator stuff, and how he wants to have every measure taken to prolong life. But I imagine so has Karen. In any event, we don't talk about anything much, most of the time. TOnight, for example, he came upstairs with his computer, and asked me a few desultory questions, but didn't keep up any conversation and didn't really answer any of my questions, and seemed so ill and out of sorts that really I was relieved for both our sakes when he decided to leave. I didn't want him to leave so much as I felt he was too ill and uncomfortable to stay and didn't want him to stay on my account, but didn't want to say so and offend him. It's just that he often won't do something he wants to do, because he is only doing xyz because he thinks the other person wants it...and it gets so twisted that no one knows what he wants in the end and you have to simply let him suffer the consequences of not stating his own wishes.
And if you understood that sentence you are pretty good at untangling utter confusion! :)

But I'm serious. Karen, of course, continues to irritate and infuriate me with her demandingness and boasting and the way she tries to take Joe away from me (she really does, and deliberately tries to make me jealous, though she also knows that she is no competition). Every time I'm with Joe, she comes iin without even knocking, and doesn't leave when she sees I'm there but just barges right in and sits down, making it the threesome I cannot tolerate. Then I have to leave, because I cannot take anything but a one to one, especially when the third person is she. How I think I'll tolerate this threesome at Disney WOrld I can't imagine, but...

In any event, Karen aside, what is the problem between Joe and me? I wonder if it isn't the fact of his being ill. When he wasn't noticeably ill we could talk about it and about other things and it was fine, and we had good talks. But now that he cannot talk, except by computer, he seems troubled and down, and at least with me, reluctant to say much or even respond when I say something to him.
I don't handle his being ill as well as Karen does. Having had juvenile rheumatoid arthritis in her childhood and having spent a lot of time in the hospital, she is very comfortable with sick people and with the idiom of physical disability. So she is in her element, though her own disability is less apparent than she claims it is...After all, she can walk, drive, talk, socialize, travel, organize a complicated trip for three to Disney World -- where is the physical disability that keeps her and has kept her from working for twenty years? But I guess that's not up to me to decide, though I know many other people have asked that question besides me.

I know, I know, I keep coming back to Karen, when I proposed to talk about Joe. I will discuss Joe at another time. Evidently it is Karen who is more on my mind right now. So what is it about Karen then that so disturbs me? I obviously hate her guts, right?

Wrong. Or if you saw just the two of us you might think we were good friends, making jewelery or having a soda or cup of soup at the diner together. She most likely thinks that's what we are. After all, I dunno that I've given her any reason to think otherwise. I've gotten angry with her, yes, but most likely she writes that off as my bad mood or an angry whim, not as any systemic so to speak problem with the relationship. Joe knows it is, but hopefully he is not telling. I doubt he would, though, as he himself is being dishonest around Karen, doing her every wish and command so that she will drive him to the Clinic, 100 miles away, every two months. All else is secondary, including me. He has said as much. He will do any and everything she wants, no matter how unpleasant for him, no matter how costly, just to make certain that she will keep driving him. Sometimes I think that he is taking us to Disney World NOT because he wants to go but because SHE does and he can't say No to her. If I knew that, then I would not go, except if he needed me to.

But with Karen alone, I am generally speaking pleasant enough, though I don't appreciate her manipulativeness. Oh, Karen just rubs me the wrong way most of the time; our personalities clash in the worst way and I don't even think she understands that, as she tramples roughshod over me with her pushy doomineering habits.

I shouldn't complain as she does get things done, and is a master on the phone, and is planning this trip like the travel executive she used to be. But forgive me if I do complain, I do.

Update Plus A little Homework Assignment

Before going into the homework assignment given me by Dr O today, I wanted to report on two on-going issues. The first is the Disney trip. After I told Lynnie about the trip for the first time today, she was dubious about the whole idea of my going and when she heard that not only were we all sharing a room but that I was to share a bed with Karen, she became adamant that the trip could become destabilizing even dangerous to me unless I had my own room. Even then she would worry, she said. She told Joe and Karen how we had traveled, she, Sal, (her fiance) and I, during the book tour, with their insistence that I always have a room to myself, how they turned down any engagement that wouldn't accommodate that need. They knew that I needed space to myself and a place to disengage and get away from too much stimulation. As a matter of safety as well as sanity. And she explained how paranoia triggered by fatigue and misinterpretation of harmless laughter could snowball into a meltdown unless I had a place to go to decompress and calm down and try to figure out what was going on...Anyhow, they got the point, and since they still wanted me to go, and I really do want to accompany them after all (for reasons that will become clearer soon) Joe said he would pay significantly more for me to have an adjoining but separate room to myself. Also I won't have a meal plan but a la carte meals so that I can more freely choose what I want or don't want to eat each day, without worrying about huge meals and wasting food. Our first "event" on the second day, the day after we arrive, is to go "Soaring" at Epcot center...I plan to report on the experience here that evening, if I have the energy and time.

The second issue is, oh damn, this is so old and tired, but I might as well admit it: my weight, at 91 lbs. Obviously I'm not eating enough, though I feel like I sometimes eat all day long. Other days, it is true that I forget to eat most of the day, but not always! However, risking the condemnation of a diagnosis, I will briefly admit that my standards constantly lower as my weight falls. Where once my lower limit was 95lbs, at which point I swore I would "do" something about it, now it is 89lbs, when I promise myself I will reverse this trend and eat like crazy and gain a few pounds. But I suspect I know what would happen, were I to reach that weight by accident: 87lbs would suddenly become the now verboten lower limit! 87lbs would be the new weight under which I could not allow myself to fall, until I did, and then a new standard would form...And you see how it happens? All without any intention. (What is strange is that I had been certain, until I weighed myself as I do once a month, that I had gained weight and was back up to 105lbs! So much for knowing my own body...)

I just came back from Joe's apartment, where I'd been waiting to put water in his feeding tube to finish the procedure for the night. The bipap alarm kept ringing and ringing, sometimes for many minutes and sometimes only once before shutting off. This has been happening regularly recently. Apparently it went off and on much of the night at the Clinic when Karen and Joe were last up there. When the bipap machine senses that Joe is not breathing, the alarm sounds. This is meant to wake Joe even if only subliminally so as to make him take a breath, which then triggers the machine to shut off the alarm.

The fact that the alarm was not shutting off could mean one, that he was continuing not to breathe on his own, or two, as he says, his inhalations, such as they are, are too weak to trigger the machine to actually turn off, even though he does respond to the alarm and take a breath. I don't know exactly what the second means, but it certainly sounds more hopeful than the first, or did, until I saw Dr O. She read the log I keep of my week and immediately came to one conclusion: he could die at any time. This shocks me, though I suspected as much. I just hadn't heard anyone who knows something about it actually say it outright. If this is so, then it seems to me the Clinic ought to be talking to Joe right now about needing a ventilator in the near future, not waiting and waiting and not mentioning it...It seems as if they simply are waiting for him to die and won't even discuss it before it is too late! The respiratory therapist thought he should be using the BiPAP machine during the day to rest his muscles, but no, no one mentions that either. I swear, I dunno that the Clinic is all that great after all. They only go there because it is famous, for other reasons, and Karen was a patient there for years. But their ALS program is only a year old in terms of accreditation, while our local one, yes we have one only a few miles away right here in town, is ancient by comparison.

Which brings me to my homework assignment. I am to organize in three columns or three boxes a list of any issues, worries, questions etc about Joe, his healthcare, his future. They should be placed in one the three according to whether a) I can do something about it now or soon b) it is something I can work at over time, or c) it is something I have no control over.

Well, I'm going to quit writing this here and after I get my manuscript of poetry packaged and addressed to U of Iowa I will sit down and do my homework. Later on in the week, when things start to calm down, I'll get back to you. Tomorrow I will be frazzled and not likely to be able to write yet again, what with seeing the Levines in the morning through the afternoon as usual, then getting blood drawn, and a Sun Magazine writers' group I joined recently in the evening I might cop out and not go to that one...too much to do and too little time. Then again, maybe I'll go once and see what it's like. Who knows? I'll have to decide at the last minute I guess. That's sometimes -- often -- the best I can do.

More Conservation Tips

Use Low-Flow faucet aerators and shower heads, from Eartheasy.com: "Installing Low-Flow shower heads and faucet aerators is the single most effective water conservation savings you can do for your home.

Inexpensive and simple to install, low-flow shower heads and faucet aerators can reduce your home water consumption as much as 50%, and reduce your energy cost of heating the water also by as much as 50%.

This conservation of water and energy is not only good for the environment, but the savings in your utility bills will pay for the cost of the aerators within a few months. From then on, you enjoy continued savings.

How to tell if you need one

Faucet: If an aerator is already installed on your faucet, it will have its rated flow imprinted on the side. This should read 2.75 gpm (gallons per minute) or lower. Replace if over 2.75gpm. If no aerator is installed, check to see if there are threads just inside the tip of the faucet. Most modern faucets are threaded to accept aerators.

Shower: Set a 2qt. saucepan on the floor of the shower and position it in the middle of the shower stream. With shower on full, count how many seconds it takes to fill the pan. If it takes fewer than 12 seconds, you could use a low-flow shower head. If you have a low-flow shower head installed, it should read 2.5 gpm or less.

Models

There are two types of low-flow shower heads: aerating and non-aerating.

Aerating - mixes air into the water stream. This maintains steady pressure so the flow has an even, full shower spray. Because air is mixed in with the water, the water temperature can cool down a bit towards the floor of the shower. Aerating shower heads are the most popular type of low-flow shower head.

Non-aerating - air is not mixed into the water stream. This maintains temperature well and delivers a strong spray. The water flow pulses with non-aerating shower heads, giving more of a massaging-showerhead effect.

Cost: Low-flow faucet aerators usually cost $5 -$10. Low-flow shower heads range from $8 - $50 depending on features such as flow adjusting dials and designer styling. Hand-held models are more expensive than fixed models...

Low-flow shower heads and faucet aerators are available at most hardware or plumbing supply stores. Many local utility companies give away low-flow aerators free, so it's worth a call to them before trying anywhere else."

Well, folks, I followed these instructions (on the website there are pictures as well) and so far as I could tell, I do not have an aerator, or at least not one that changes the flow as there were no markings on the side. Also no threads. As for the shower, what a disaster! Only half of the faucet water went into the shower, the rest poured away into the tub and out the drain, so my 15 seconds to fill the 2 quart saucepan was meaningless (it took all of 3 seconds to fill the pot from the running off tap water!). I would say, then that my shower definitely wastes water, since half of it is completely unused! What I want to do is measure Joe's and Karen's then research the availability of Low-flow heads and such and present the info to the building manager, with the facts and figures as to the savings. If he agrees, I will then send the packet to Boston to the building owners, with the suggestion that they implement some inexpensive changes, for the sake of their own savings, and as a gesture towards helping the planet (which is running out of fresh water even as we speak, and the fuel to heat it with that we cannot afford to burn).

Now for the kitchen, which is is the busiest room in the house, and the biggest energy user.

Again from Eartheasy.com: "You can lower your monthly energy bill and contribute to a cleaner environment without making major changes or buying expensive energy-saving gadgets. Simple changes, and thought given to energy reduction, will make a significant difference.

Dishwashing
~ If washing dishes by hand, fill one basin with warm soapy water and the other with cold rinse water. This saves much more water than leaving the cold water running for rinsing.

~ If you're using the dishwasher, pre-rinse dishes with cold water. Be sure machine is full, but not overloaded.

~ Turn off automatic air-dry switch, and let dishes dry by air. If your machine doesn't have an air-dry switch, turn off the control knob after the final rinse and prop the door open a bit so the dishes will dry faster.

~ If a small load, avoid using "Rinse-Hold". This uses 3 to 7 gallons of hot water each time it's used.

~ Check the manual that came with your dishwasher for the manufacturer's recommendations on water temperature; many have internal heating elements that allow you to set the water heater in your home to a lower temperature (115 degrees).

Microwave
~ Microwaves use between one-fifth and one-half as much energy as conventional stoves.

~ Microwaves are most efficient at cooking small portions and for defrosting.

~ Food cooks faster when placed on the outer edges of a rotating tray rather than in the center, allowing more microwaves to interact with the food.

~ Food cooks faster in a microwave as the surface-to-volume ratio increases. When cooking potatoes, for example, thinner slices will cook faster than cubed or quartered sections.

~ During warm weather, microwave use minimizes radiant heat buildup from the kitchen.

Gas Stoves, Electric Ranges

~ Gas stoves with an electric ignition (piezo) will use 40% less gas than one with a continuous pilot light. Burner flames on gas stoves should be blue. If flame is yellow, the ports need to be unclogged or adjusted. Ports can often be cleaned with a pipe cleaner.

~ When using the oven, try to reduce the number of times you open the door while cooking. Each time the door is opened, the stove loses about 1/4th of its heat.

~ Burner size: Match pot size to burner size on your stove top. Heat is lost and energy is wasted if burner size is larger than pot size. Also, clean range-top burners and reflectors to better reflect the heat, and save energy.

~ Use pressure cookers. They use 50-75 percent less energy than ordinary cookware.

~ On electric stovetops, use flat-bottomed pans that make full contact with the elements.

~ If you cook on an electric range, you can turn off the burners or the oven before the cooking is finished, because it will take several minutes for the burners to lose their heat.

Induction Cooktops

Induction cooking uses 90% of the energy produced compared to only 55% for a gas burner and 65% for traditional electric ranges.
Induction cooking is based on magnetic fields: each ‘element’ (an induction coil) generates a magnetic field that induces heat in steel cookware placed on top of it. In essence, the pot becomes the element that cooks the food, so the cooktop surface doesn’t get as hot as other cooktops. Induction cooktops have the same instant control as gas and are the fastest of all cooktop types to heat and cook food.

Sun Ovens

Sun ovens are the most energy-efficient cooking appliance.These solar powered ovens require no fuel yet can cook anything you can cook in a conventional stove. Of course they must be used outdoors in the sun. For summer cooking they also save energy by keeping your kitchen from heating up.
Hybrid solar ovens are also available which have an electric backup which allows the oven to be used when sunlight is not available. Even when using the electric backup, these units use 75% less electricity than conventional electric range ovens.

Disposal Unit

If your sink has a disposal unit, use cold water when operating. This saves energy used to heat the water, and is more effective at removing grease. Grease will solidify under cold water and become more easily ground up and washed away. You can give it a quick final rinse with hot water.

Refrigerator

~ Vacuum the coils on the back of your refrigerator twice a year to maximize efficiency. Leave enough space between your refrigerator and the wall behind, as well as space to either side, so air can circulate around the condenser coils. Trapped heat increases energy consumption.

~ Check the door gasket occasionally to be sure the seal isn't broken by debris or caked on food. Test by closing the door over a dollar bill so that it's half in and half outside of the refrigerator. If you can pull the bill out easily, the latch may need adjusting or the seal may need replacing.

~ Avoid frost build-up in the freezer compartment. Frost build-up should be less than 1/4 inch in thickness. Excess frost build-up reduces the energy efficiency of the unit.

~ Be sure the refrigerator isn't located next to heat sources such as heat vents, stove or dishwasher. Even direct sun will lower efficiency - block it if possible.

~ Check temperature settings. Recommended temperatures are 37 - 40 degrees for the fresh food compartment and 5 degrees for the freezer compartment. Stand-alone freezers for long-term storage should be kept at 0 degrees.
To check the refrigerator temperature, place an appliance thermometer in a glass of water in the center of the refrigerator and check the reading after 24 hours. To test the freezer temperature, place thermometer between frozen packages and check the reading after 24 hours.

~ A new, more efficient refrigerator can typically save you $70–80 per year and will pay for itself in about nine years. Older models commonly use an annual average of over 1,700 kWh, while equivalent models now use fewer than 700 kWh. This can reduce your carbon-dioxide emissions by over 1,000 pounds a year."

Oka-a-ay. So, what I do is I soak all my dishes in a dishpan first, right after I use them, before washing them by hand when the pan is full (no dishwasher, which I hear is actually more efficient than handwashing). I use a trickle of water when I need it, no more. Instead of a full pan of water for rinsing, as Eartheasy recommends, I trickle water over my dishes into a dishpan to rinse them until the dishpan is full, then use that for rinse water for the rest of the dishes, if there are any. That way I know I have used only a panful, but have gotten to use clean water for rinsing off the soap, rather than partially soapy water I don't trust to get the dish squeaky clean!

Most of my appliances I can't do much about, since they come with the apartment and are regulation size and make, so to speak. But I try to use the microwave and toaster oven when I can, and rarely use the stove's oven at all. I have used two burners at one time out of the four available but no more and usually make one pot meals. But I live alone and cook for two people at a time at most, usually just me, so my carbon emissions are naturally lower than those of a couple or family, or ought to be...who knows?

Another way to minimize one's carbon footprint on the poor earth is to buy used. I mean anything used cannot contribute further to global warming, having already done that once and for all. So it is essentially, one, new to you, and two, carbon-free to you as you are buying that instead of something new that took energy in the manufacture and materials and shipping. I like to buy my clothing used when possible and purses and even shoes. Used boooks are great, and used furniture too. Used dishes don't need to match, though you can get whole sets at Goodwill and other thrift stores and consignment shops. (BTW: I don't go to the Salvation Army because of their attitude towards our gay brothers and sisters). I have found planting pots and a picture frame and vases and baskets and a wonderful scratching arch for my cat all used at such places, and each was purchased for a dollar or two with an environmentally clear conscience. My twin sister is an aficionada of her local upscale consignment shop for their electrical equipment: she buys her espresso makers there!

You may fear that such things -- clothing, shoes, dishes -- will be dirty or broken, but most such stores go out of their way to sell only items in good condition and already laundered or clean. NEVER have I found myself with an item of used clothing that could not be worn immediately. You may want to wash them first anyway, but the point is, the clothes are clean and usually in great shape. Once I found a brand new suede skirt in my size, the tags still on it; you might also remember my poem about the three cashmere sweaters I found at that flea market...tags still on, new, from the 50's!

Enough for now. I've got a busy day tomorrow once again. If you have other hints or tips, feel free to share them in the comments section. TTFN

Update on the Disney situation...

Well, we are going, it seems. The reservations have been made and the airline tickets paid for: May 22-May 27. I am resigned to it and the whole situation, cheered only by the fact that I did talk to Joe and Karen about my need for time by myself, and my inability to tolerate sitting in the sun, or shade, by the pool. So at least they know that, and agreed that if I run out of steam before they do, they will take me to the monorail and let me go back to the hotel alone, while they continue on. I think, however, that Joe's stamina may be the limiting factor in this so-called adventure, not necessarily my own, limited though it may be. He is as concerned about it as I am, while Karen, chiming in, assured us that her stamina is none too great either.

I am not sure that Joe really wanted to go, but I think he was afraid of getting tired, just as I have always been, rather than actively opposed to seeing the place. The latter, as you know, is just as important a factor for me in my distress at contemplating a trip of this kind. To be quite honest, I have capitulated enough to the government's "keep 'em cowed" machinery (that was the point of the Patriot Act, to scare us into giving up our rights, and since then everything has been done to keep us scared, while we allow Bush to continue fighting a war that only makes us enemies who hate us the more) that I also fear terrorists will attack the park while we are there...at least that is where my mental meanderings take me when I don't absolutely control them.

Already Karen is planning our meals, which is in part necessary as we have to reserve places at restaurants now, even for late May. Great! Like I want to plan now what I'll want to eat a month from now, lunch and supper? That's insane, but of course Karen won't eat in the "pedestrian" hotel dining room, no, not when there is gourmet food and specialty eats elsewhere! Oh, damnation. If Joe and I were going alone, you can bet we'd eat at the Hotel, with a few forways out, but we wouldn't concentrate on eating...wouldn't HAVE, that is. At the same time, I do have to hand it to Karen as she arranged this whole trip from beginning to end singlehandedly, no mean feat considering that we have to bring all Joe's medical equipment on board the plane, arrange handicapped seating, arrange rides and a room for three with special equipment, like a bathtub transfer chair for Joe in a handicapped bathroom and a refrigerator and dozens of other things, all in advance and all coinciding perfectly. It is all very well and good for me to say what Joe and I would do alone, but alone we'd never have gotten there, or even made such plans as Karen has managed to make by herself. So brava for her, and if I don't enjoy myself, here's hoping I am gracious about it and that Joe has the time of his life.

PS I would have discussed this with Dr O before deciding, as you can well imagine. But, alas, she was sick last week and is on vacation this week and unavailable, though I made a stab at reaching her by e-mail to no avail. So I was on my own and had little external counsel to help me make a decision. One person said, Yes, you must go, and one person said, No, you shouldn't go if it threatens your equilibrium. This kinda left me nowhere, and, well, I guess stuck with the guilt-trip that had caught me up before. So now I'm going and we'll hope if I can't swim I can at least float.

Storycorps Follow-up

To anyone interested in our Storycorps story, check out the official blog at the link below for a brief entry about the interview I did with Joe and their impression of him. I think he will be very pleased to see it (I can't show it to him now, as he is asleep, having just come home from the Clinic after three days completely exhausted.)

http://storycorps-east.blogspot.com/

At the Clinic, according to the report Karen gave me, they said, one, no ice cream or sorbet anymore, as it is too thin for him to eat safely (he still eats for taste if not for nourishment, but must stick to what is thick). Everything must be the consistency of applesauce. It seems to me that this must apply to drinking as well, but neither Joe nor Karen seem to know. They think it is fine for Joe to drink coffee and Coca Cola as well as water. But this does not make any sense! Why would Coke as a thin sugared liquid be any safer than the thin liquid that ice cream turns into? Water probably won't cause aspiration pneumonia, so far as the pulmonologist has told us, but Coca Cola surely can't be so harmless! And the cream in coffee is just as bad as any cream in ice cream. True, he uses very little, but he also uses sugar, once again a potential problem. Does he still drink OJ? I cannot for the life of me imagine that this is a "safe" food, nor why Karen, for all her Harvard education that she flaunts so proudly, thinks that drinking a liquid is any different from eating a food that turns into a liquid. Does neither of them have any sense or are they both of them simply without...Argh! Never mind. It just seems a simple deduction on my part that anyone with half a brain could make
Anyhow, I will write to the nutrition expert at the Clinic and get things straightened out formally before I lay it out to Joe, just in case I am wrong (though I can't see how I could be).

Another change the Clinic wants to make is for Joe to wear a brace on his right ankle, because they fear that the way his foot drops when he walks could cause him to fall. He refused this, of course, saying he didn't need it yet and couldn't drive with it, though it would be a simple matter to take it off when he wanted to drive, not much of an inconvenience. But it would make him feel like an invalid, and with all the medical equipment surrounding him in his apartment already, I imagine that he does not want to be reminded of his illness even when he goes out.

But being in a state of denial does not help him, really, much as I respect his right to it. If he falls and hurts himself, he could end up in a worse place than simply needing a brace. People with ALS do fall, all the time. And they break bones when they do, and some are seriously injured. The Clinic people are trying their damnedest to help Joe avoid these possibilities by preparing him in advance. They suggest that he use techniques, tactics and assistive devices earlier rather than later, perhaps even too late to prevent the accident that was waiting to happen. But Joe, in all his stubbornness is his own worst enemy, not that I completely blame him. He has not practiced using his laptop voice at all, and now cannot do so, when he is practically unintelligible. He gets terrifically frustrated by our inability to understand him, but he will not do anything about it but keep trying to make us comprehend what he cannot say verbally. If he would only type it out and press a key-- I have done it. It is not hard. And the voice is quite easy to understand, much easier than Joe is. I would think it would be a relief to be able to communicate easily again. But I fear that Joe is going to wait and wait until he cannot speak at all, then resort to writing notes in handwriting that was always illegible but may be even more so due to weakness in his right hand (the first limb to be affected). I don't know what to do to help! I found him the voice program months ago and have suggested we practice using it together, I on my computer, he on his. But no, he refuses, always with some excuse or an irritated look of, Not now, can't you see I have more important things on my mind? Grrrrr, I want to shake him and say, What could be more important to you than talking? You love to talk and you are locked into yourself right now, unable to communicate with almost anyone but me, and less so, Karen. Doesn't that tell you something about what is most important right now? Huh?

Talk about frustration. I'm wringing my hands over this stubborn refusal to do anything at all to help himself until the very last minute, when frankly it is too late to do anything but stop-gap measures to catch up, and then rush to finish up what stop gap measures couldn't take care of. It was that way with the feeding tube. He wouldn't use it merely to supplement his diet as the nutrition expert had been suggesting for months. No, he had to eat or not eat for as long as possible, until panic overtook him and he gave up eating (for nourishment) altogether. So then we had a huge race to find a way to get the tube feedings done, with no help from anyone. We were in the dark about what to do and how it was to be done. It was only by chance, or because I was making calls to various places and someone finally told me about needing a kangaroo pump, that we learned there was such a thing...It was only then that we finally we got the Clinic to call a supply company, order the pump and Jevity food supply and prescribe it so the VNA could come in and teach us how to use it all.

This sort of thing keeps us all on the edge of a crisis, and ought to be, and could be avoided. That's what the Clinic's advice is for! But Joe adamantly refuses to take or use it, and we must follow his lead like dumb sheep, but for Karen's assertiveness when she feels really strongly that he must do something he doesn't want to (like buying clothes that fit his leaner body, that don't gape and reveal his underwear to the world at large).

Am I complaining too much? I don't mean to sound as if I am. I love Joe and understand his desire to keep awareness of his illness at bay. But as his caregiver I am frustrated by this same thwarting of my ability to really help him. After all, I know he wants to live at any cost, and denial, if it brings on pneumonia or leads to a serious fall, could kill him. Though I have told him that in no undertain terms, he simply doesn't want to listen. Nothing I say gets through. He listens to his own counsel only and to hell with anything I know better than he might. It has always been thus, and a source of irritation to me over the years. But now, when his life is in the balance, it...Well, I can't change anything, so I might as well just try to forget what I know and let him call the shots. He will anyway.

A Trip to Sunny Florida?

Well, the newest news is that Joe is taking Karen and me to Disney World for 5-7 days to spend our mornings at Epcot Center and the Animal Kingdom and our afternoons by the pool. Not only was this decision made suddenly, and under pressure (Joe: “I want you to come, Pam...”) but if reservations can be made, we will be going sometime in May.

That's wonderful news, you say? You must be thrilled!

Anyone else would be, I suppose. But me? I dread it now and will continue to dread it more and more as the days pass. I understand that I cannot say no. Why? Because Joe may never get to do this again, and I should want to be with him when he sees Epcot Center, which he has always wanted to do. This may be his last chance to live it up, as much as he can, eating through a tube and breathing with a machine (only at night so far).

So I guess I’m going, but there's no way it is for my enjoyment. I only do it for Joe's. For my part, the sheer materialism of it appalls me, both Disney’s and our own. I, for one, want no part of that whole world of plastic. Consume, consume, consume. The whole idea of Disney World sickens me. And bores and wearies me.

But there is more: I don't know how I will be able to tolerate being around people that long, with no privacy or time to myself (unless Karen and Joe do go to the pool, in which case I can have some time off because I cannot sit in the sun, or even in the shade in bright light -- it simply is a certain way to induce a migraine, which would only incapacitate me. Nor can I tell if I can stand the crowds or the noise or the over-stimulation of the place. But there's nothing for it but to go down there and try my best. I have no choice.

I am not being a kill-joy here. Generally speaking, I enjoy whatever I do. I love making jewelry for people and sculptures and seeing Joe and Karen and Lynn and Cy and my parents etc. I love writing, and am thrilled when I can read. And need very little in the way of external stimulation to keep me happy. If there are trips I might be able to enjoy, I know there are places I would better tolerate under different circumstances, and people I would rather, alas, travel with. I love Joe, yes, but I would not enjoy traveling alone with him; he never tells me his true opinions or wants, and so the burden would be on me to make all the decisions and I'd only find out later that I didn't choose correctly, though how I was supposed to know I can’t guess. And since neither of us knows how to travel -- both of us being in some sense wimps -- we'd be hopeless if we ran into any sort of glitch. We would not be able to laugh at the situation or ourselves either, being too upset and confused by what steps to take next.

Karen, having been a travel executive before she became disabled, really does know everything there is to know about traveling. She could get us anywhere and handle any situation, I am certain of it. She is assertive and even manipulative in order to get things to go her way, which can be handy when in a pickle or handling a misunderstanding, so she says. But in terms of being, actually being, at any destination with her, ALL she cares about is her next meal and whether the restaurant is a decent one. No quick sandwich for her, no, she has to have a real sit-down luncheon. This, as you can imagine, is extremely trying for me, who could care less about where and when we eat. And Joe, who is already paying for the trip, counts every penny and would eat at a cafeteria as readily as I. If he could eat at all, aside from the occasional soup or puree.

The biggest damn problem with this trip, frankly, quite aside from the fact that I have NO INTEREST in going and am actively opposed to Disney World on principle, is that I feel like I will be the third person out. The one that doesn't matter, the one who doesn't get to make any decisions, as usual. And the one that will get dumped on by Joe, if there is any disagreement between Karen and me. He always takes her side, at least in my presence. And I always feel attacked when I'm with both of them. In fact, I get along just fine with each one, but really do not do well at all with both together, and I frankly worry about this and the trip most of all. I'm not good with threesomes, I admit. I prefer a one-to-one, where I don't have to divide my attention and can simply be honest about what I can and cannot do. But to deal with two others who want to do something that I cannot do...what then? Obviously the majority rules and I have to go along, as will happen time and again at Disney World, and it will exhaust and anger me, no matter how hard I try to keep my temper. Because exhaustion ALWAYS brings out the worst in me. And because they will not know, or care, that they just put me through hell, all because of the guilt trip Karen is always laying on me: Do it for Joe, it may be the last time he______. Fill in the blank.

Well, that's all well and good, but Karen has the sociability and stamina to do it all. (In fact, I'm not really sure why she is considered disabled...But that's another discussion.) I have to carefully monitor what I do, and marshall all my energies and social skills to make major forays out into the world. Half the time, I simply don't do it, even if I have paid money for something in advance. I'd do anything for Joe, within reason. But I can't be someone I am not. I have limitations, Joe's illness notwithstanding, and I still have to deal with them.

Argh! I am exhausted and beginning to dread this trip for real just in writing about it. I wish I didn’t have to go, or that there were somewhere else they’d consider going that would be just as comfortable for Joe. I wish I knew how to arrange things in advance, by talking with Joe and Karen, so that it could be more comfortable and less stressful. I am doing it for Joe, yes, but if I end up a basket-case because I try to do everything I cannot do, how is that going to help? But I dunno what to say or what I could possibly arrange that wouldn't seem to them like I was a party pooper, so to speak. They want to celebrate all day every day for 5 days! Well, I need some time to be alone or I'll go crazy, and I need them to know and plan this into the schedule in advance. But how to tell them? How to ask for anything for myself?

Hearing Voices Network

The Hearing Voices Network or HVN, is a Manchester, UK, consumer-driven group dedicated to people who have auditory hallucinations (AH), with branches now in the US and continental Europe, Japan and Australia as well. The Network was started in 1991 but the concept of the organization began in 1986 when a professor of psychiatry in the Netherlands, Marius Romme, met a patient who suffered from chronic AH and a deep suicidal depression, possibly as a result. This patient, Patsy Hage, read one book which comforted her, a book by Julian Jaynes, which argued that early in human history we were all guided by command AH caused by the separation between right and left hemispheres of the brain.

Romme arranged for Patsy to appear on local Dutch television aimed at other voice-hearers: 450 people called in, not all of them psychiatric patients. In fact, one third of them claimed they lived with voices without much difficulty. Romme chose 20 of these to serve as speakers for a conference on people who have AHs. One principle he always insisted on was that any interpretation of voice hearing was acceptable, no matter how unusual or bizarre. So if I tell the consumer-run group that my voices are Satan and his minioins talking to me, that interpretation must be accepted as somehow useful to me, and it then be discussed as to what such an interpretation might mean to me.

HVN is not entirely an anti-psychiatry movement, at least insofar as some members take meds and see mental health practitioners. But formally it does reject the usual specialist physician/psychotic patient relationship. Romme, as energetic leader of the "movement" speaks of those who have AHs as being like the homosexuals of the 1950s, "in need of liberation, not cure." Also, he considers psychiatry itself to be conditioned on cultural and personal oppression (shades of Thoas Szasz and "The Myth of Mental Illness"?)

Romme's research is often adduced in HVN's publicly disseminated reading material. In one study, patients with AH were studied along with non-patients with AHs. The non-patients it turned out felt they had more control over their voices, rarely sought to stop them or get rid of them, coped with them well, and understood or strove to understand them. "Helping the patient to accept the voices and actively developing coping strategies with the patient," Romme had said, "may well prove an effective adjunct to psychiatric rehabilitation."

Coping is key in HVN. THe idea is not to get rid of one's voices but to learn to deal with them, understand them, and live with them, without obeying their commands or becoming overwhelmed by them.

It is worth pointing out that hearing voices is NOT the sine qua non, necessary and sufficient, for a diagnosis of schizophrenia. Not at all. Hallucinations can occur in Alzheimers and Parkinsons, epilepsy, hyperthyroidism and migraines among others. Completely "normal" that is to say non-psychotic people can hear voices too. AHs are only one aspect of the diagnosis and not an especially necessary one. A large minority with schizophrenia never hear voices. But if one does, it is a symptom which must persist, along with several others, for months (unless treated) without longlasting concomitant exaggerations of mood complicating the picture.

A longtime friend of mine recently told me, after reading an article in the NY Times about hearing voices and HVN that she has heard voices for a long time, since childhood in fact, dead or distant people, even God, but that they are very reassuring voices and she can summom them or send them away at will. This sounded almost perfect to me and I told her I was envious of such a gift.

The problem with accepting one's voices or putting AHs on the continuum of normal experience are those who do not know they are experiencing them (many) and those whose command AHs are dangerous to self or others. We have all heard the stories of the convicted schizophrenic who killed someone in response to a command hallucination he (or she) did not recognize as a symptom of illness much less as an AH of extreme but "normal" experience. Or the person who killed him or herself under the same sort of spell, not understanding the voices were not real and the command unnecessary to obey. What the HVN proposes to do about these AHs they don't say, but I think they pose a bigger problem than the organization wants to admit. A great many people with AHs do not in fact present themselves for treatment upon first hearing voices, despite what the HVN claims. And they often get lost in the bowels of the System once homeless or poverty-stricken and unable to access health care even should it be desired. What chance is there that mental health care will be available if basic services are not? It takes some education to learn to recognize what is an AH and what is real. I know this from personal experience. All too often I mistook the first for the second and never knew the difference!

The label schizophrenia may be overly broad and does carry a stigma, but do we throw it away or do we educate people about it so that they no longer penalize one for the label? One could go either way. I personally believe that no one should be allowed, certainly no agency or governmental program, to stigmatize or stereotype an illness out of simple and willful ignorance. Education is the key and we should do all we can to let people know what schizophrenia is and is not whever we can. I tell people whenever i can that I have it, so they'll know that we can look almost normal and be in recovery and no one have the slightest inkling, even though we still have symptoms that we hide.

A Visit to Storycorps

Yesterday, by a stroke of incredible luck, I managed to get an appointment for Joe and me at Storycorps's Mobilebooth Airstream trailer, which is here in Hartford for the month of April. For those of you who do not listen to National Public Radio (and I am one of you...I just learned about Storycorps from the TV stories about it this past week) let the following, cribbed off their website, give you a short intro. If I linked it correctly, there should be a video accompanying the description that gives you an even better idea of what Storycorps is all about.

______________________________________________________________________

StoryCorps is a national project to instruct and inspire people to record one another's stories in sound.

We're here to help you interview your grandmother, your uncle, the lady who has worked at the luncheonette down the block for as long as you can remember—anyone whose story you want to hear and preserve.

To start, we're building soundproof recording studios across the country, called StoryBooths. You can use these StoryBooths to record broadcast-quality interviews with the help of a trained Facilitator. Our first StoryBooth opened in New York City's Grand Central Terminal on October 23, 2003. We've since opened a second StoryBooth in New York City, two traveling recording studios, called MobileBooths, and an Outpost in Milwaukee, Wisconsin.

We've tried to make the experience as simple as possible: We help you figure out what questions to ask, and we handle all the technical aspects of the recording. At the end of the hour-long session, you get a copy of your interview on CD.

Since we want to make sure your story lives on for generations to come, we'll also add your interview to the StoryCorps Archive, housed at the American Folklife Center at the Library of Congress, which we hope will become nothing less than an oral history of America. (See the press release on the Library of Congress Web site.)

A video (QuickTime, 10 MB) is available which explains the StoryCorps experience in more detail. http://www.storycorps.net/video/abc-news.mov

Our Vision

StoryCorps is modeled—in spirit and in scope—after the Works Progress Administration (WPA) of the 1930s, through which oral history interviews with everyday Americans across the country were recorded. These recordings remain the single most important collection of American voices gathered to date. We hope that StoryCorps will build and expand on that work, becoming a WPA for the 21st Century.

StoryCorps celebrates our shared humanity and collective identity. It captures and defines the stories that bond us. The process of interviewing a friend, neighbor, or family member can have a profound impact on both the interviewer and the storyteller. People change, friendships grow, families walk away feeling closer and understanding each other better. Listening, after all, is an act of love.

http://www.storycorps.net

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So that is what I signed Joe and myself up for. Karen came along, but I asked her not to add anything, except to help translate Joe's words if ever I was at a loss to understand him.

Saturday morning, things did not look good for the interview. Joe was not in a good mood and his voice was particularly bad, which frustrated him to the point of his wanting to cancel the interview. I think he only went along downtown with us because he didn't want to disappoint me. But his gloom did not diminish even upon seeing the Airstream, and as we stood around outside it, waiting to be called for our appointment inside, he wandered around the courtyard by himself, looking miserable, and would not even try to talk to me. I felt awful, like I was proposing to torture him, and told him again and again that he could pull the plug on the whole thing at any time, all he had to say was that he just didn't want to do it. But he wouldn't tell me that, just shrugged and shook his head when I asked him if he wanted to go home.

Finally someone appeared with a coffee cup and looked at us a bit bemused. "Are you here, uh, to do any interview?"

"Yes," I said. "I signed up for one last night. There must have been a cancellation as it was the only slot available all month."

"Hmmm, let me check something." He looked beyond us and we turned to see another couple had entered the Old State House courtyard now and was looking at the Mobilebooth as if they too expected to go inside. Oh, no...

THe young man, whose name we later discovered was Brian, came out of the Airstream again and asked my name. I told him, and showed him the email printout of my confirmation of the appointment. I thanked heaven that I had thought to bring it with me. He nodded and took it with him, checking off something on a piece of paper. "You didn't by any chance sign up under another name, did you?"

I told him that I had put down another interviewee's name, Cy, as a place holder, in case Joe said no, but that my name was the only one that had registered at all, and that no one else's had appeared on the confirmation at any time. Brian went over to the other couple while I turned back to Joe and Karen, not watching what he did or said to the others. Finally, he came back to us. "Okay, Folks, we're all ready for you. Why don't you climb aboard and we'll get started."

Inside, the trailer was bigger than I'd expected. We went directly to the sound studio in the second room in the back and took seats across from each other over a small table, Karen and I facing Joe, with microphones in between us. An extra one was placed near me since I was on the outside and not really near the one on the table. Then after we signed a few papers and introduced ourselves the interview began.

At home, we had tried a run-through of the questions I had planned to ask Joe about his childhood and growing up, and his adult life and wishes and dreams and his illnesses etc but once in the Mobilebooth, well, I threw them all out the window and decided to wing it. I had planned to start at the beginning of his life. However, since I knew what was important to him, and because I had just a few minutes before, outside, asked him if he had a love of his life, and he'd said: You; did he believe in love at first sight: of course, I loved you from the moment I saw you raging down the halls of the psychiatric ward...I decided to talk about us.

So we started talking about that. And lo and behold he brightened up and his voice was intelligible for the first time in days. I almost didn't need to translate, except that I guess what I understood not everyone would have. But he was understandable, to me, and that was what mattered. And he seemed to have a good time, to joke and to enjoy himself. Even to the point of mugging for the non-existent camera, and making gagging gestures when I turned serious and told him what he'd meant to me. But at least he was having fun and feeling good for a change and so I didn't mind.

At the end, the Storycorps Facilitator, who had also fed me questions to ask Joe during the interview whenever I fell short or quiet, took our pictures. But he forgot to give us the CD of our interview, which all are supposed to get at the end. He called me to tell me he'd mail it out on Monday, so hopefully we'll have a copy of it by Tuesday if all goes well.

I'm so happy I could do this for Joe as today, Easter, he could neither eat pureed Easter dinner at the Saybrook Fishhouse nor speak at all, so it was quite a downer compared with yesterday. I think it would have been easier had it not been Easter and had we not had to deal with his mother, with whom he has an extremely conflict-ridden relationship, to say the least. I think he needed a day off, a day to rest and relax, before having to take her on...But he is a good son and does his duty, so he took her and us out to dinner, though he could not eat nor talk himself. I felt terrible about that, and could scarcely bear to be there, but for the fact that I could at least take the brunt of his mother's constant chitchat by listening and responding to her so that Joe would not have to (which he hates to do above all else).

A good day yesterday, a not so good day today, and I am exhausted but tomorrow Joe moves into his new apartment so the frazzledness is not over yet, even though movers will do a lot of the work. They won't do it all, or I will have to do some of it as I am sure they will not get everything put away correctly and Karen will plead that she is too physically disabled to do any work (she can walk enough to go shopping for Macy's clothing anytime of the day or week and walk from her car in our parking lot, but needs Joe to drop her off in front of the building if he drives...She manages to pick up her beads and shoes and clothing off the floor when she wants to wear them but claims she can't...Oh F---!). All I know is that she will sit back and direct me, order me around, tell me where I must put things, and then make me do all the work and take credit for it when it is done.

I have big problems with Karen, but mostly when she is around Joe and me. When we are together, alone, she is less troublesome, though she is forever BOASTING about how smart she is, how she went to Harvard, as if that says anything about her supposed "brilliance" (all she cares about is style and fashion and movie stars). But I find her abrasive, aggressive and egotistical a lot of the time, and often, even when we get along superficially, really can't stand her. I also freeze at the thought that when Joe is gone, she will be my ONLY friend.

I have to do something about that, but I don't know what or how. I didn't meet anyone in that class, now over, because Balam never had us introduce ourselves, and it wasn't a particularly interactive class, nor long enough for one to form relationships with others. You either knew people upon coming, as two nurses did, or you came and went alone.

Well, enough for now. Joe's bipap is malfunctioning, which I went down to help him with. However, Karen barged in and took over, so I left. No need for all three of us working on it and there was clearly no longer anything for me to do. A third leg, extraneous, why should I have stayed?

Frazzled

Sorry folks, but this will be another brief entry week too as there are several new developments that are taking my time. One is the feeding tube, which has to be monitored and refilled when it runs out, though that is easy enough for me because I stay up till midnight, when it is about empty (Joe is fed overnight -- the entire process takes about 14 hours). But the VNA nurse is coming 3X a week for the first two weeks, visits we need to be there for. This takes up time and means rescheduling other things.

Then there is the really big change: in this HUD-subsidized building the iron-clad rule is that once you are in an apartment you cannot change to another apartment. People have tried, complaining that they have a very good reason to need to change -- they are scared of high floors or have a terrible neighbor or a phobia about cats and a cat lives next door etc and all are refused. BUT Karen learned that the apartment across the hall from her and literally one flight down across the hall from me (I live next to the stair well just above Karen) was coming vacant. We both thought that Joe should be near to us, as we are his main caregivers and he is becoming more and more dependent on us. A handicapped apartment would do him no good, even were one available. In ALS the problem is not independence but how to cope with increasing dependence while maintaining a sense of self and individuality.

So we went to the building manager and pled our case -- Karen, Joe and I. Odis listened and tried to convince us that he would not make an exception, but as he spoke we could tell that he was actually changing his mind even as he was saying the opposite! In the end he wound up telling us that he thought we should write a letter to the Boston owners of the building and he would do what he could to accommodate us. No promises but he thought we had a good case. Which, if Odis said it, meant we were all but assured of being approved.

Moving day is on Monday. I packed Joe's important papers and small items all day today. We pick up the keys tomorrow and after I see Cy and Lynn I will move those boxes into the bathroom for storage until after the movers come and go on Monday. Luckily, Karen found a company that will pack him up and move and unpack everything for him, so except for what I did today -- about 7 boxes -- we will have to do nothing more but reorganize a bit once Joe is unpacked and in his newly refurbished apartment, a hop skip and a jump away.

The only problem is that Monday is also the day I have a doctor's appointment. Karen does too. Then Tuesday, the cable company comes, and we have to be there since Joe can't talk to them. Oh, it is simply one thing after another...And nothing can be changed. I am doing one thing for "enjoyment" though I must admit I kinda regret signing up for it: the National Writers' Workshop at the Hartford Hilton the following Friday and Saturday. I think I would prefer to rest then, not have to head out to hear more speakers and be with crowds of eager beaver writers trying to schmooze with editors and publishers and other writers etc. I dunno what schmoozing is, or how to do it actually, but it doesn't sound like my cuppa tea. I'd rather read a book or do some writing of my own than sit and fall asleep listening to someone speak on how to write! Why o why did I sign up for this??? I don't know. Because a friend of mine, a long-time editor at the newspaper was going and I thought if he is going it must be worthwhile since he has spent his life writing. But he doesn't have schizophrenia and narcolepsy and is probably meeting his cronies there and most likely knows some of the speakers and and and...

Oh, damn. Well, too late to get my money back now, and too much money to waste by not going. Shoulda known I'd regret signing up and dread it at the last moment. Typical of me...

Anyhow, I am already exhausted from packing all day. Haven't gotten anything else done as I sat with Joe for several hours while the feeding pump ran. It had some problems after a while, which necessitated an emergency call to the VNA and some on-the-phone counseling as to how to fix the machine, after which I did not want to leave until I knew it was working correctly. Now I have to go down to his apartment, not the nearby one, and check the bag and see how much Jevity (food solution) is left and whether it is time to add more. So I will stop here and apologize if I am not able write yet again in the next three days or so. I hope I will be able to, but given the pressures I am under, I cannot guarantee it.

TTFN

and for those who don't know it or have missed my explanation BD is a smiley. It is me with hornrim glasses and a big grin. Turn your head to the left and take a look. BD 8D is me in intellectual round rims!

Supreme Court Decision

Finally the Supreme Court has stepped in and done something instead of sidestepping an important issue by citing impediments to standing as the minority in this case would have done. The issue, broadly speaking, was global warming, specifically whether the Environmental Protection Agency (EPA) has the authority to regulate greenhouse gas emissions from automobiles. It also ruled that the EPA must regulate these emissions -- or "cannot sidestep its authority" to do so -- unless it can prove that global warming is not caused by greenhouse gases or provide other scientific bases for its refusal to follow through.

President Bush had before this insisted that the administration did not have the "right" to regulate CO2 and other greenhouse gases under the Clean Air Act and wouldn't regulate even if it did. But what is clean air but air free of excess greenhouse gases that trap heat, warming the planet and killing of hundreds of species, potentially our own?!

This ruling might even open the way to a ruling forcing the EPA to regulate CO2 emissions froom power plants, which it has steadfastly refused to do up till now.

Had what turned out to be the minority four justices won the vote with a fifth justice, the case -- Massachusetts v EPA -- would have been thrown out, MA having no standing as plaintiffs according to Justices Alito, Scalia and Roberts as well as Thomas. Chief Justice Roberts argued that the court should never have even addressed the issue. And where would that have left us? Back in limbo with NO regulation and no CO2 controls and the country and world burning up! Will they NEVER learn???

Well, it is only a first step. Now the Bush EPA has to DO something, build some regulations with teeth and efficacy, and enforce them. How much you wanna bet that little is actually done before another court case has to be filed? But I'll be optimistic and hope that the professionals at the EPA, the non-Bush appointees, are there in the background actually doing environmental work and they will continue to do the Right Thing, and maybe, just maybe, have some beneficial effect this time.

Did anyone catch the ALS show on PBS Frontline tonight? I missed the first half but saw the second half, unaware that it had started on the half hour just before. Maybe it was only shown on WGBY, I dunno...Anyone from MA?

Handmade Jewelry

Kate suggested I show some of the several necklaces I have made since starting this Adult Ed course. Each of them has matching earrings, which don't photograph well, so I can't show you those or the 100 pairs of varied and complicated ones I have made and plan to sell along with the necklaces at the N--- Flea Market this spring and fall.

Due to the nature of setting up blog entries, the order of these necklaces got all screwed up, with the last coming first and the first somewhere in the middle. The titles or the captions should tell you something about where each one fits in. Lengths are given for most of them, but I can assure you that the smallest is at least 21" and the longest is 32" with most of them between 23" and 27". All can be shortened. Only the two blue ones can be lengthened. I give you this info for the obvious reasons, suggested by Sue M. EMAIL me do not write in comment section - pamwagg@cox.net

Blue beads

This 27" necklace I did on my own, without the class help. It is mostly a casual one, with a random arrangement of big beads joined by links and little four petalled flowers that you can't really see in this picture. I had fun making this, and as I wear each necklace at least once before I sell or give it away, I enjoyed wearing it with nothing more fancy than a turtleneck and jeans.

Handmade pendant and chain

This wire is made of stainless steel, but is very similar to silver both in appearance and price (!). Better than silver in one aspect, it doesn't tarnish and is a lot stronger. Most of our jewelry up to this point has been made of "craft wire" which is largely copper wire coated with a colored nylon to simulate various different metals -- silver, gold, and other less natural hues. Most of my jewelry is made of this wire, which nonetheless is quite serviceable and looks fine, though it probably won't hold up all that well over the years. (A warning to those who might want to buy it. You are welcome to, but I can't exactly guarantee it will last ten, twenty years!) This one necklace is combined steel and silver, and hence just might last, though it is very delicate. The rectangular pendant looks crooked because it has been placed at an angle and since it is composed of linked loops it necessarily deforms. Hung around someone's neck in the right position, it will look like a proper rectangle.

My most recent necklace and most complicated.

Not only did this 21" necklace take a long time to make as each chip had to be individually linked to the next (as an extra click on the picture once enlarged will show you) but when I went to take off my shirt after wearing it for its maiden voyage, I forgot I had it on...Disaster! I stretched many of the links past the point of return and broke others. I had to go back to the drawing board and replace many completely - a b--ch of a job - and then having redesigned the necklace, I had to open and relink, then break the links and relink again (necessitating remaking several links) until I had it the way I wanted it. I am still dissatisfied, but I don't have any other "ingredients" so what you see is all I have to work with at the moment.

Don't get me wrong: I have plenty of supplies, but nothing that matches or contrasts properly, and these particular beads I acquired at the class, so naturally I can't get more right now.

The danglies are made of stainless steel "paddle pins, spear type." In fact, the whole necklace is stainless steel this time, which means it will last, though I'm afraid to sell it lest my repair job not be good enough and it break on the buyer, who could not fix it as I can.

Teardrop medallion necklace

On this one I made less than the others, which I made entirely by hand. This one, the chain I bought instead of made and the actual medallion had to be bought and altered. I made the danglies from scratch and the clasp, though.

Wood/chain necklace

Not much to say about this necklace, except that it is made of all natural materials and the black beads are actually dyed horn. The chain part is made from a weird "stich" that we learned in class, actually quite interesting and useful, though it took a while to figure out how to link it up with a regular link chain.

First Necklace

I was very pleased with my first attempt at making a 27" linked necklace, that is at building a necklace with beads on a handmade "chain". I'd always thought that the chain went through the beads, and it does, kind of, but really you make each bead with loops on each end separately then join them, so it looks like a chain runs through them. The colors don't come out very well in this picture but are really a soft pink and an equally pastel green, with mother of pearl reflecting those colors in the long bits of abalone shell in-between.

Second necklace

This is actually the single most time-consuming necklace (approx 27") I have made yet. First I linked the beads on the round part together, which as usual took its own time. Then I had the humongous task of using that "stitch" I wrote about to make 1 inch chains, about 2 dozen of them (each chain taking 3 "stitches" or links). That took forever, I'll tell you, and was not fun, though of course all of it is fun or I wouldn't do it. Then I had to hook each chain to the main necklace, so that it looked like a frill going around the outside. This too was made on my own, my design and just for fun. I love this one and may not part with it because there are a lot of rough edges that I do not have a good file to smooth down and also because it simply took too long to sell for a mere $15, which is my standard price.

Third Necklace

I call this my Toffee Necklace, because the beads look just like toffees. But I was proud of this 32" one, made for class, because I designed the squiggly wire thingies interspersed throughout, which, in copper, goes particularly well with the toffee beads. The rest of the beads are linked by the four petalled flowers I have used elsewhere, though this was the first time I used them. Candy, anyone?

Fourth Necklace

Joe likes this one best, and Karen says it is her favorite for summer, though it is far from being my own favorite or even personal best in terms of design or work. However, it is 23", solid, all natural bone and horn beads, and linked by "gold" copper wire. It is the only time I actually bought a center bead specifically for a necklace I planned to make. Usually I improvise or make the pattern pick out the center, but this one bead was inexpensive and so perfect that I indulged, though I rather prefer making my own.

Tonight I'm going to try again to photograph the earrings -- the fixtures, findings as they are called, shine and put off a glare that blurs the image, dunno why -- and if any pictures come out, I will post them later tonight or tomorrow. TTFN BD

Fourth Necklace (Detail)

Update

It has been a hectic month, especially the last two weeks, with Dr O holding up everything by working on her commentary at the last minute. She didn't get her parts back to me entirely until the Saturday that ended the week just before the manuscript was due. When she sent it back -- I already had parts of it to edit and put into the ms but those were relatively short and I had been waiting for the introduction essay, knowing it would be much longer -- I immediately went to work, frantically editing and typing and cutting and pasting to put it into the manuscript the way she wanted it, but without the various little typos she had made. Then, on Tuesday morning, after staying up all Monday night, I had it done. I wanted to go through the poems, check them out and see if they truly were worthy of being in the book, but I knew for certain that if I did so I would start to rewrite them at the very least, if I did not take them out entirely. And the point of the book is not necessarily to have written the best poems but to have written ones that illuminate schizophrenia. I had to physically restrain myself -- by sealing up the envelope -- from giving the ms another examination and Karen took me to UPS to send it overnight to NJ where the press is that does the series of "illness books." Then I allowed myself the rest of March to veg out and simply enjoy myself.

St Martin's is also willing to take a look at it, tho they don't publish straight poetry but maybe they would be interested in a format like ours, which isn't just poetry but has an overarching pedagogical purpose as well as "entertainment" as poetry. But I won't hope too much there as my editor has warned me, though she did want to take a look and said, "We'll see."

My jewelry making is continuing by leaps and bounds, even though it has been only 7 classes in 9 weeks (one snow day and one holiday). I have made about 200 pairs of earrings to sell at a flea market that starts in the spring in the next town over and about ten necklaces (! made the chains the beads are on, some complicated with little flowers and swirls etc). It's the wirework that really interests me, less so the beading, which seems less skilled, though some of the necklaces I've seen beaded are quite masterful. But I'd rather work with the metal and pliers, and so I continue to make the linked beads, with the chain made in-between each bead. That also means I can make the whatchamacallit earrings -- chandeliers? -- which are essentially chain-linked beads. But I'd like to learn more than I will have after the final class this Wednesday. Balam, the teacher, says he may teach another class out of his studio this summer, and if he does, and I can afford it, I'll take it, even if it is only for four weeks. I may as well learn as much as I can locally, as I doubt I will be taking any classes farther afield, though there are some in other nearby towns.

Joe. Ah, well, the one good thing is that today he wrote me an email assuring me (since Karen had told me the opposite, putting words into his mouth) that he may find things difficult, but oddly enough he is not suffering, not even with his speech and eating difficulties. (He said he NEVER suffers.) As to those, his speech is almost unintelligible now, though Karen and I can usually figure out what he is trying to say, or with repetition can guess at it. Most other people have no idea. And as of Monday or Tuesday a kangaroo pump is going to be delivered so that he can (or when it becomes necessary we can) tube feed himself, over the course of the nighttime while he sleeps, or during the day while he sits quietly in his chair resting. He wanted to do it himself, without the pump, but he can't hold the syringe up long enough to let it flow in by gravity, nor can we lean over him and hold it for him (the tube is too short). And you are not supposed to force the food in by pushing the plunger. So the pump will have to do. Joe has lost 45 pounds since last year, most of it involuntarily and now weighs what he did at his lowest point in high school, which I think upsets him. But he finds eating so difficult, can only drink or eat thickened liquids like thick soups or pureed vegetables, that he is not getting enough calories anymore. Plus, in ALS there is hypermetabolism where you simply burn off all you eat and more, so you lose weight no matter how much you eat. I hope Joe has not reached that state yet and that he is only losing weight because he cannot eat the normal amount of calories...Otherwise, I dunno how much he can feed himself to stay the same weight; I know he does not want to lost any more. In fact, he always liked himself obese! He thought it softened him, made him like a teddy bear. He did look cuddly and gentle that way, I admit. But everyone who sees him now tells him how fantastic he looks...sort of weird, considering how ill he is now.

Cy and Lynn (C and L) are getting on in years and Lynn is in constant pain, sometimes, if not frequently extreme pain. Last week it was so bad that she was screaming and had to be taken to the emergency room, where they did nothing essentially but tell her to take a drug she already had. This, after making her wait, sitting without her husband in the patients' row, for four hours! She is lucky it wasn't 8 hours...I know the ER they went to and it can be horrendous. I would have counseled them to go anywhere else, but as she admitted, she wouldn't have listened at the time, because her doctor had sent her there. But that doc doesn't work at that hospital at all and knows apparently nothing about their ER. She clearly didn't understand much, because Lynn was told, once taken in, that "we do not do pain management here" in no uncertain terms.

Lynn's level of pain scares me, because it makes her sometimes talk of not wanting to live any longer, of a life of constant pain being too hard. Lord knows I don't want her in pain! God knows I want a cure or something to help her, and I have not given up hope that something will be found. I think she and Cy are nowhere near aggressive enough in looking for answers, but simply do what the doctors suggest and wait for the next appointment, don't call inbetween appointments if something doesn't work and don't complain if they don't think the doctor is doing something helpful. I wish to god I knew what to do. I wish I were a different person, their real daughter perhaps, and had the right to try to intervene. Lynn calls me her "daughter" but we both know I am not really...and there are many things I cannot do that a blood daughter could. I think there MUST be some NON-drug method of treating pain that could be used -- a TENS unit, or nerve block or some kind of epidural if that is what it would be, something to block the pain signals from getting to the brain, from whereever they are originating -- her shoulder or elbow, or her gluteus maximus (a site of mysterious agony that defies all investigations as to the cause -- not that I think many have been done).

Cy, my wonderful friend who picked me out at folkdancing, where I was sitting in the chairs and rocking, and came up to me instead of avoiding me, and said " you know, I pray that way" and won my heart, Cy is worn out. I think both whiplash from a rear ending in the car a year and a half ago, or two years ago, combined with Lynn's illness a year ago in Israel, have conspired to take the life out of him. He has lost the twinkle and sparkle in his eyes. He is now using a cane and he no longer teases me or asks for a hundred hugs and kisses. He rarely smiles. And that is so not like him. He cries when Lynn's skin tears -- the prednisone has made it so thin she bruises without provocation and then simply brushing it roughly causes it to tear and bleed. And he naps it seems every chance he gets. Whenever I go there he is napping, or about to, or eventually decides to. I don't know who will go first, but I don't think either one can live without the other, I really don't...and I am scared for the survivor, and scared of their pain.

But Joe and Lynn and Cy are all alive and holding their own for now, and nothing is imminent so far as I know. So I won't borrow trouble, anticipating what might happen tomorrow, but enjoy today and leave tomorrow's anxieties for the future, where they properly belong.