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Sorry, am on edge, several, many edges, too many edges. Joe at Hospital for Special Care chronic vent unit; Lynn L dying...Pavarotti dead and I don't know who is to blame, or that I am not...Do I deserve to die? Do I deserve to burn? Should I? Yes, yes, and yes...but and there is always a but. So that's the quandary and my impulse is ever to be impulsive in these matters, which makes for dangerous times. Sorry to burden you with this. I need to keep writing until a call comes in because otherwise I dwell on fire and flesh, the two comingling in my dwelling place...I heard the visiting nurse, Lisa, in the hallway today outside my door, talking, then swung open the door, only to find she'd fled. She came back ten minutes later, startling me out of my chair and dwelling, and said she hadn't been there at all, but she lied, I heard her! She wanted me to take 5mg of Haldol extra and I was so nervous I agreed to take 2.5mg but only that, no more, and told her I was "safe" because no ERs or ambulances ever again! But I dunno...I need to keep writing, I need to keep writing, because not to write is to dwell and to dwell is to reside in what will burn: solvent, flesh, skin...I cannot dwell there, must keep on writing, writing, writing, because it draws me away from what I must not mention again. Now it is almost 10:20am. The call comes at 10:30am...if Dr O is not late. What do I tell her? The truth, of course, but all of it? Lynnie has already mentioned a hospital bed...it seems inevitable that Dr O will too, if or when she knows where I am being led by the invisible army, a force for good undoubtedly, because it tries to do away with me! What to do? What to do?
No, that's not me wanting to die, it's Lynn L, who has made it clear she does not want to reach her next birthday and is smoking up a tempest whenever she can to make certain she won't. Last week, she went on vacation with her husband (87 and showing it now, though admitting nothing and holding ever more tightly to the reins of control) and though she tells me she had a wonderful time, I have heard reports otherwise, and in any event can see deterioration in her health just since then. A week ago, she could walk from the car down the hill to the picnic tables at the park to smoke outside with me. (I only have a cig to keep her company, do not need to smoke or do it at home). Now she can barely make it from her own deck, indoors to her seat in the den and is severely short of breath and weak and dizzy when she does. It is supremely scary to see and watch, but I personally cannot deprive her of cigarettes, because they are literally the only thing she continues to live for! When she decides she cannot smoke any longer, because she cannot breathe well enough, then it will be her decision. Right now, it is not my call, even though I am the one supplyuing her with cigarettes.
Am I wrong? She is a grown woman, and would get her own if she could go out on her own and drive. But because of her memory problems she can't drive any longer and her husband refuses to let her smoke and wouldn't hear of buying her cigarettes himself. So what is she to do but enlist a friend or surrogate daughter? I realize she would live longer without smoking, but her pain is acknowledged by the doctors to be untreatable and unassuageable by any available means, and she doesn't want life on those terms: chronic, disabling pain, a failing memory, and not being able to do anything she used to do, no pleasure in life left but smoking. She has lived for her children, and then her grandchildren long enough to see them all grow up and graduate from college. Now she wants out, and is she not entitled to that? I cannot bear the thought of her facing death, but I realize-- Oh, I dunno what I realize or understand, but I can't stop what is happening; it's like a train, racing pell-mell towards its final destination and the station is just ahead. All the last two months it was Joe I worried about, and now it is Lynn who may be the one to die soonest.
Joe himself seems to be holding his own. He was finally transferred to the rehab Hospital for Special Care last Thursday, after two delays. Now he is ensconced in a single "close observation" room, with a tv with "extended cable" service he is finally happy to avail himself of, no longer obsessed with the orange juice fountain that he saw in his delirium and was convinced broke his fever. Now he is doing the thinking he always said he would do, once ALS really disabled him. He stays informed by watching local politics on the local access channel and the cable Connecticut government channel. He has been thinking about universal health insurance and how to meet everyone's needs, and I am certain that once he is through he will have come up with something brilliant and unique, and workable. He won't mind that he has no power to implement it, it is joy simply to know he thought of it, though it always frustrates me that he does this and nothing can come of it due to his position, which is way way way down, on the "totem pole" of power and influence. I feel like the old Joe may be coming back little by little, so long as he doesn't catch pneumonia again and have to return to the ICU, where he could lose all the progress he is gaining.
Today, while I was there, he had a swallowing test to determine if he could drink anything or have thickened liquids occasionally to supplement the feeding tube. I saw that his tongue literally did not move when he was asked to stick it out or move it from side to side. It did lift a tiny bit, but mostly it lay inert despite all his efforts, which meant that he would have a very hard time moving solids or sticky puddings from the front of his mouth to the back of his throat to swallow them. On the other hand, he managed to swallow water okay, because he could close his mouth enough to make a vacuum and let the swallow itself pull the water from his mouth, or else it simply drained down his throat with the swallow. He can swallow, it is just that he can't move food into position to be swallowed, and before the trache there was always the fear of aspiration into his lungs, which is what caused the first pneumonia to begin with, alas.
As for speaking, he was supposed to be evaluated for a speech device by the same speech and swallowing therapist, but she had never heard of Voice for Joanie, the Connecticut organization that lends devices to people who need them. This was inauspicious as I had heard from the head of VFJ just the day before and she'd said she would be speaking to HFSC (Hosp for Spcial Care) on Tuesday about what sort of device Joe could best use. It turned out that she spoke to someone else, who did not do the evaluation at all, so some wires got crossed somewhere and I'm not sure where. I have to let Karen know so she can look into it when she visits tomorrow.
ARGH! This is SOOOO much stress and I am feeling overwhelmed by it all. Driving home from HFSC today was hair-raising as the cars were crowding me on both sides, daring me to swerve into either side and cause an accident, and taunting me by swooping in front of me whenever I got too mindboggled by the colors and speed and closeness of the cars and had to slow down to get a grip and get hold of reality again, but it never really cleared until the road was empty and there were only a few cars a distance from me and none on either side anymore, since it was a single lane. Then I only had to watch out for whatever challenges were posed by the oncoming traffic. Passing by the benches on the way inside today was also almost more than I could take. I have learned to smile and say "Hi!" to all the faces I pass, without actually knowing anyone or recognizing who I've seen there before or not (except for one guy with a dog who is always there) but I do it only to dis-arm them, literally take their weapons away, and now I feel like it is too hard to keep doing it, don't want to, can't, but have to...Don't, won't, can't! It is torture, because I'm wrong no matter what I do! If I don't look at them and say "Hi!" I am evil and unfriendly, but if I do, then I am in danger from them and subject to their comments and taunts and attacks.. So I'm damned if I do and damned if I don't do. But frankly, it has become too hard to carry on with this charade of friendilness and so I won't continue, not right now. If they care, well, they won't care. They'll just go back to whatever they thought before, and I'll be the same old same old. They hate me no matter what I do anyhow. Tomorrow morning, I invited my next door neighbor in for coffee (I've never done so despite her living here two years and me twelve). I did so a few days ago and can't change it now, it's too late. But I don't know what we will talk about, she talks about her family as if I should know something, and I can't bear it frankly because I can't remember anything, knowing nothing about her! How do I tell her, get her, to tell me something simple about her, when I don't remember what she has already told me!?! I don't want to go through this, I really don't. I don't even know how much she knows about me, how much the others who gossip have told her. I know that one person who read the book has visited her, so she might have told her, just in passing. But how can I ask? It would be so much easier to talk with her if I knew whether or not she had read or even knew about the book. Maybe I even gave her a copy, I don't know...I don't remember!
Crap! I have taken to writing down everything that happens in a notebook, where I also put everything I have to do in a day, one page for each day. So I can refer back and see what I did do from time to time and refresh my memory. I should do that with people, keep a card with facts on it for each new person I meet, if I can remember long enough to write things down. I dunno if I don't pay good enough attention or what, but things I hear simply don't stick, no matter how engrossing the conversation. I can't even remember what Dr O says half the time, and you know I pay attention to her, or as good as I possibly can, though perhaps that is not as good as it could be. It is hard to tell what the problem is: attention or memory, or a bit of both. I know I have some longterm memory, as there are flashbulb memories I recall eidetically, or that I feel I recall with photographic clarity, like nuggets of diamonds amid the sludge of all that has faded or never stuck. But the sludge of forgotten material is far greater than what I do recall, and what I recall so clearly a very small proportion of it all. In fact, the book comprises almost all of what I managed to recall of those years...Not all, no, but it is hard to remember things I actually left out now. There are a few incidents untouched upon in the book, and certain years barely spoken of, and my family life that we were basically advised not to dwell on (by a very poor editor who was later canned). But my short term memory is -- well, it is what it is, poor by any measure. Not the absolutely shorterm one. I can recall a telephone number, some of the time, if I really concentrate, but the one that requires you to remember something an hour later without it being continually refreshed. As for attention: I dunno how well I attend to anything before drifting off into my own thoughts or attending to other things. I know I can't listen to other people spout off without repartee for very long, my attention simply can't tolerate it. So I tend to ask questions, even interrupt, in order to keep attending. Otherwise, I'd simply get lost as soon as the other person talked more than three or four full sentences without a break.
Is this a problem of schizophrenia, or just me? I dunno, but if this attention thing is common in SZ then perhaps something people should know is to NOT talk, or not lecture someone with the illness but try to intersperse a few sentences with something, action if the person won't speak or letting the person herself speak if she will. Otherwise, you run the risk of losing their attention bigtime, however tempting it may be to lecture someone who might not respond easily.
Enough for now. There is too much I have to do for Joe even here at home, and I didn't even do all I was supposed to do today! It may be a function of the Haldol I took when I got home from HFSC, when the driving was so frightening and the walls were closing in on me, literally. That could be the cause. Though it did help the anxiety, it also has side effects, which we all know and hate, of deadening and slowing down and dampening the ability to do anything.