Post by Bill (not Jillians) DOW #3I think we may be coming to the end. As many of you know my wife has
terminal brain cancer (GBM) and is home under hospice care. Her aphasia
is getting worse by the day. Yesterday she asked me to, "help her with
a check" which somehow meant, "turn the TV off." This morning she kept
shouting "Bear" which I thought was my name (Bill) but that wasn't
right. Never did find out what she wanted, and she was getting REALLY
agitated so I gave her a dose of Lorazepam to calm her down. She's
sleeping now. She knows what she *wants* to say, but it never comes out
of mouth correctly which frustrates the hell out of both of us. Heaven
help me to understand her in these her last days.
This is a living hell for both of us.
Auntie Annie likes it when I stroke her hair softly and gently, as if petting a beloved silky golden, from the forehead, back towards the top of her crown against the pillow, applying merely a touch of pressure on the scalp, gliding backwards in slow motion. It's sort of like a mini-swedish massage. She closes her eyes approvingly, and manages to say, "That feels good."
I feel SO F*CKING STUPID saying this...but apparently...it's just not obvious to some people, what to do.
I guess I have to recognize, though. I had the world's best teachers. (I'm going to cry, almost.)
When my room was a mess, and this was after 3rd grade, the room in which I grew up from then on, until college, and a year's break, as well, I remember her stern orders, "CLEAN UP YOUR ROOM!!!"
But I would look at her insistently, not afraid, but appealing for direction and instructions, "HOW?!!?!??!?"
So she would tell me. Step-by-step. And we would do it together.
1. Start with the garbage. Collect all the garbage, and throw it away.
2. Find all the pens and pencils. Sort of like pick-up sticks scattered all over the room, or 52 pick-up. Put them all in the utensil jars on the desk.
2. Gather all the dirty clothes. Take all the dirty apparel, and toss it into the clothes hamper in the hall.
3. Now the clean clothes. Everything which is still fresh, and can be worn again, put piece by piece, back into the drawers, folded, and in its stack.
4. Any kind of toy. Things you were using, playing with, anything which belonged back in the storage wall, whatever it could be, or I believe I may have had a chest, objects back in their places, or perhaps even some books. I was not much of a bookworm, like my brother, but I do recall that this was my nighttime activity, until "Light's out," either books which INFURIATED my mother, which I picked up from my peers at school, such as Judy Bloom, or in later years, though she remained silent, for example, the Flowers in the Attic series, or books she brought home for me from the P'ton Public Library, drawing me in, by sitting me down in our living room, and with much concentrated effort, reading to me the beginning....like my very favorite author, wow, makes me want to cry, Elizabeth Borton De Treviño (I *think* that's how you spell it), or whatnot, or lastly, books as presents, which quite frankly, were never much of a success, at all. "Did you read the book?" I would recall being angrily interrogated, i think also sometimes regarding library books, already judged to be hung by the neck. "Yes," I would respond with protective force. "Did you look up *every* *word*??!!? [you didn't know, implied]" she would accuse me in such a way which revealed she already *knew* I was lying and did *not*, which was correct. "Yes," I would respond without guilt or shame, revealing a hint of my inner subtle sarcastic perturbation and confusion. I remember being given Anne of Green Gables, and me being like, wtf? Or for my last Hanukah in P'ton, home for my nervous breakdown, before returning, and then taking my final trip out west, to live permanently, and eventually grow my roots...I hope...And A Voice To Sing With...like a little pinprick, into my soul, looking up at my mother in quiet hurt disbelief, as if to query..."how could you...?" And lastly, I am *GUESSING*, because, how *strange*, this was her MO, this is what I was *taught*, this was the f*cking "Oral Mishnah," to inscribe your books, with name and date, and books as gifts, with a note, marking the occasion, and your name and date, and I just went to check on this one...I know this was a gift....in P'ton....LATE...so I was thinking, another Hanukah gift?!?! so I was like, okay, duh, I'm just going to go look at her inscription, and guess what? omg...it's blank. it kinda hit me...I was there for my birthday...it just seems so CRAZY...the last book of this sort...and of course, I forget EXACTLY WHEN, but the Hebrew Dictionaries, the same ones used by Stephan (formerly Stephen) Pickering, aka Pickles. Except then the Post Office lost mine, and I replaced them...I should *probably*...well...maybe I should take up the Internet offer, and buy the same edition I was given...justin case... ! :) So where was I, Bill...well, to all and any, if even NECESSARY...it was just shocking...I guess I was so young, it's hard to believe it wasn't natural, or rather, innate, but I guess I really have to thank Smoky...he taught me how to massage him, his back and neck and shoulders and head. It was just pretty surprising...how difficult it was to find competent masseurs or masseuses, when needed. I even got seriously injured from them a few times, and not just in LA, but the Bay Area, as well. And these people went to SCHOOLS. omg, alright, never mind, wow, i just want to crawl into a hole and disappear. :-/// makes me wonder why Cedars-Sinai doesn't have a psychiatric hospital anymore, and scared if i say about the very bad things going on there, if the hospital will shut down, too, or not take me anymore, somehow, someway. i don't really know what i should say or not say anymore...like mom's "dilemma," and sometimes it's better to just "swallow it," and "keep the peace." (or did she mean, "piece?")
I mean, I walked into Auntie Annie's, and I took one look at her, two times ago. Her eyebrows were all crinkled. I could *tell*, omg, she's in great pain. Don't be scared or feel badly or like she's dying or something really wrong, I mean, it's just her RA (rheumatoid arthritis), which she's had her whole life, and she is used to it and lives with it, and even says, and I suppose I can't quite recall all her words, but I promise, this is exactly what she was saying, just using my generation's forms of self-expression: "If/When I wake up and don't have any pain, I seriously freak out, and am like, 'OMG!!! WHAT THE HELL IS WRONG!?!?!!'" i wonder if dr. dylan ever says like or freak out or seriously or dude. i know he says man...i know kids of kids from the 60's really dug their parents' generation...well, that reminds me of flirting with disaster...that was strange. maybe it was because those parents never patently abandoned it in exchange for attempting to forcefully educate their children to excel and succeed, i don't really know. in my high school...well, i didn't see much or many 60's quotes in the year book...even though i picked it up, learned of it, from my extended circle of friends...always remembering that the intro to james taylor (strangely, the first one i ever heard, lying on my bed, with my new sony walkman, which i bought with my bagel money, 10th grade), was both at that party where this very strong looking very blonde student from a school outside our town, possibly even private, was *so mean to me*, i couldn't believe what he was doing, it was strangely sadistic, and he thought it was funny, where we starting kissing outside, he was leaning up against the car, like the rapist in thelma and louise before he got blown away, or i think *i* was up against the car now, there was no place else for me to go, yes, i'm positive, it's almost like he was straddled around me a bit, pretty sure, reminds me of billy joel at the rail is it called, pressed up against the stage...but anyway, french kissing, then...you know, how you take a little break, and keep doing it, a session, he started pulling away, like when someone puts out his flat hand to give him five, or charlie brown, and the football, or that reminds me, johnny cash in walk the line, with the peanuts...omg, are the kabbblists building me a bob, is this *sick*?!?!?!?!??!??!?! is the mail fantasy as fake as tal's keys to the kingdom!?!?!?! did that bastard fucking *rape* me, i call it that because of TOOM, etc...i don't even *WANT* to build-a-bob, please, i want to find the real bob dylan, and...no, seriously...you know what? forget it, i was going to say chop off his penis, seriously, i am not even going to give him the satisfaction...that's just about exactly as much as i care. you can't hurt me, robert zimmerman. nothing you do could ever really hurt me. you aren't that strong. you simply just don't have that much power. hate to break it to you, bud. Back to Auntie Annie, she also would INSIST, that nothing helped her, she didn't even bother to take anything at all, even over-the-counter. That's just what she *said*! It didn't really occur to me much, to insist she go to a doctor, and say, ask for tylenol with codeine. All I know with Tramadol is, for my surgery, it really stopped working *SO QUICKLY*. I finally called my doctor, and he assured me, Advil is your friend now. I knew what he meant, and explained about my concern, about my stomach lining, which is why I was tempering their abundant usage. But he said it was okay, to go for it. I called because it finally hit me, maybe my sickness has not caused a plethora of horrible painful new cavities as I thought at first, even decided it was so bad, I better ask my regular dentist for new X-rays, maybe this is pain reverberating in my somewhat nearby teeth from the injury, which is still so bad I am still on soft foods. So Auntie Annie...well, I couldn't stand to see her crinkling like that, and asked if it was okay to give Tylenol, and she said she could. It worked. A bit later, she looked more relaxed, and I asked her, gently, do you feel more relaxed now, and she squeezed her shut eyelids TIGHTLY, to indicate a powerful, "YES!" It just kills me, how could the care-giver be there, and not be giving her as much Tylenol as she can take, when it's OBVIOUS just from LOOKING at her, that she is in PAIN. Again, maybe I have more experience than others, because I know more about pain and suffering than anyone should ever have to know, I think....Once I even told my doctor (psychologist), "I don't give a *shit* about Auschwitz..." and I wasn't exaggerating. Not that if I am ever facing approving of this life, and wanting to go to Heaven, that I'd be eager or interested in finding out if I am correct, without perhaps the aid of some kind of computer helmet or something.
The thing about Auntie Annie is, she is mostly interested in sleeping. And she sometimes, apparently, I learned last time for myself, is confused. But other times, she is NOT. I just called the neighbor upstairs, a few hours ago. It hit me (again), I can just work on the laptop THERE as well as here, if I had wifi, so I am humbly requesting a password. I haven't heard anything. Sometimes I think everybody hates me. Or it's like Bob says, something is happening here and you don't know what it is, do you? That's fer f*cking sure. But like the rubber strips. Dr. Reuben insisting that I am just "lazy," insofar as investigating how they got there on all our doors on the first floor, whilst I was away but for a couple hours, when also, I could have just as easily *not* gone to the market afterwards, as best as I recall the details of this, and how could *anyone* have dared to get this all done if I had come home. You know what? It just occurred to me *now*, how if a huge crew were involved, it could have been done within the course of my session. Reminds me of the time I was on my way to a meeting at the synagogue, a youth group think, I think, and was almost there, and my bra strap broke. I was so relieved it wasn't in the middle of group. But it was horrendous, and I turned around to go home and get a different one. How could anybody chance it, while I was gone, that I wouldn't have say, forgotten something, and turned around to come home? I feel the same way about the earrings. Nobody would come in here, crawl on the floor, move them, or the first one which I never found, remove it, I mean, say I woke up...or the computer..."(No Good)", someone suggesting, perhaps you passed out and did it unconsciously and woke up, when I was manic at the time, and hyperawake, and alert, and ON. Although, that DOES remind me of the time driving, when I blacked out for no reason, I was what they call manic, I mean, no sleep...not tired...and constantly on the go...those were my only symptoms....anyway, that was terrifying, being on the road next to one of those cement rails/guiders, on a freeway. I just held steady, blinded in darkness, (ha ha passover), afraid to stop in the middle of traffic like that, not knowing what else to do, and it came back. (SMH...omg...right?) It's just...the rubber strips...obviously I didn't do that unconsciously. And there is no way on earth I am mistaken. My father was WRONG. "I'm sorry, sweetheart. They were there," after examining them. He couldn't even tell when the milk had gone sour. (Well, he was in his 70's.)(Oh, the irony. I could smell the milk last time...I could, I was just slow to respond...and then it was in my coffee, so it was diluted, and I was just, well, again, slow to react...couldn't quite stop myself. Sad. :-((( ) ANYWAY...
I'm sorry, Bill. I was going to post, thank you for my tea from RMD post. About what it's like to just exist....but I couldn't stand to share it after some consideration. Like, what the fuck do I know about this. Albert told me of a friend, HIGHLY intelligent, and he could no longer move by himself, and he was going out of his mind. Sometimes I go out of my mind, TOO. So my recollections of just existing whilst still comatose, and slowly recovering, wafting in and out of consciousness, just really don't seem Jermaine. :) ??????? ?.? ??????????
***
Some people don't *LIKE* to be touched. My mother, for example. If she would be on the computer...and I would come up behind, and start to massage her shoulders to relax her. She would stiffen up, and tell me not to do it, that she didn't like to be touched.
Same as with an air-conditioner, in the car. She said she didn't like things blowing on her. We had an attic fan in the house. Temperature was always frustrating for me. It was so hard to stay warm inside, with all my layers, and wool sweaters, and leggings, and wool socks, and thermal indoor booties, and I was never cool enough in the summers, getting up repeatedly, to douse my towel in cold water, to use on my bed, naked, to cool off, until it quickly reached my body temperature. Sometimes I would sneak it, in the winter, and turn it up a few degrees, iirc, we weren't supposed to go above 68. Then I would get caught, and it would be turned down, or maybe I turned it down, or did I only do that when I was alone in the house, no, I seem to recall like doing it sneakily...but I do not recall ever really getting into "trouble," or punished, or yelled at for that. Unlike the winter hat, or the bicycle helmet, (reverse order), or the radio while studying for finals.
So what do *I* know. Absolutely nothing.
I bet all the songs are coming true. Hotter than a crotch. I stood alone upon the ridge, and all I did was watch. I should quit. It's probably a sick joke on me. Or some attempt to teach or share a moral lesson.
Forget it.