Showing posts with label death. Show all posts
Showing posts with label death. Show all posts

Sunday, August 17, 2014

Sunday Phone Calls: When Even Death is Funny

It's been a rough week, the kind where the best communication turns out to be reminding the people whom you love that you do, indeed, love them.  It makes for a shorter phone call, a blink-of-an-eye visit, and calls for just a tiny greeting card, though the cost of postage does not change.

Growing up, Sunday was the day for obligatory phone calls to family members living far, far away.  Granted, it was usually my immediate family that bore the responsibility for the distance issue.  We tended to be overseas, or living somewhere inaccessible to even those relatives who enjoyed travel.  Or I could be honest and say that no one really gave a crap, and the Sunday telephone ritual was just another thing to check off the list.

I managed three calls today.

Those Dear Readers who've been with me a while know that my use of the telephone is, itself, miraculous, as I find it the least endearing mode of communication of the many modes we have in this technological age.

For instance, Grader Boob, one of my two beloved Brother-Units, is now so weak that his voice does not carry efficiently to the telephone receiver.  He prefers "Lumpy" now to GB, but that's just trivia.  And a lie. He has no sense of humor discernible any longer, cancer's gift, pain's offering.  As for his voice, part of it is also, I am guessing, change brought about by impingement of various nerves by those nefarious Lumps about which we so want to joke.

He could out grim the Grim Reaper, and will, I hope. Grumpy Lumpy seems to be so intensely in a snit because his life has been destroyed in what must feel like an overnight happening, despite what hindsight now reveals as a vine-like underground creep over a decade, culminating in Kudzu's blazing speed once that first tendril found the sun.

His pain is unimaginable, even to me, the Queen of Pain. His perennial lack of social graces, once endearing, now has the edge of a feudal samurai sword, his made to accommodate one-handed lunges. It's just a matter, really, of a shorter grip.  Maybe a tanto grip with a freaking 4-5 foot ōdachi blade.  I carry a small antique tanto in my obi, as do all my female friends.  Bianca Castafiore, we all know, is never without her 06 F.A.S.T. from Gerber.  She swears by the G-10 handle.  In a nod toward beauty, my dagger handle is a subtle, but distinctive, teal-green silk cord and black samé -- ray skin -- topped with a black iron tsuba bearing a dragonfly motif.

None of us bother with saya, or scabbards. Marlinspike Hall's women are famous for our mastery and obsession with fabrics of incredible tensile strength, and their artistic draping, which most men assume comes from a lurid obsession with shiny, metallic, decorative threading.  Yes, we live for the glint of reinforced brocade on a clear, hot summer day.

"The effect is elegant and rich without becoming fussy. "


Lumpy's issue is the same problem that turned the ōdachi into a ceremonial thing, a spiritual weapon.  The answer, I think, to the obstacle of how to carry his very particular sword, and successfully draw it, lies in providing him with a trusty steed, though that might attract undue attention as he canters about the hallways of higher learning. Better might be an unobtrusive trusty sidekick.  Like a dedicated sister in a wheelchair. I could pass off six feet of sword as a stylized assistive mobility device, no problem.  Who better to have his blessèd back?  Plus, I can help with any grading duties, and be the one to chuck chalk at any undergraduates who dare nap during class.

And here you thought a samurai sword reference was to end in its metaphorical stage! We are a knife-wielding clan, we are.  You should see some of Fred's knives. His nonchalant explanation for seemingly artless features -- a notch here, an odd finish to the metal, a strange blunt affect -- can chill my blood. He and Abbot Truffatore do not so much resemble Boy Scouts comparing five-tooled pocketknives as handy camping tools when they extricate their shiny toys from humble scabbards and lay them on felt-covered table tops as they seem men under the ancient enchantment of war.

So, though weak in body and voice, this Brother-Unit remains obstinately militarized, and determined to try teaching this semester -- two courses in person and one as an internet prof.  I want him to succeed;  I know he won't.  And so pardon my fantasy of squiring him à la Sancho Panza, ready, in the end, to do wheelies and behead the archaic administrators who failed him, impale the students who worked him into weakness, slash the desks and podia that his university maintained instead of providing health care for those who sat and leaned there.

I hate these Sunday calls.

And then there was the dear sister, caring for a waning mother, blindly navigating the end-of-life barriers thrown in their way by that same health care system that has failed the rest of this fucked-up family.  Mom is unaware of the obstacles she dodges, her memory gone, or maybe that stealthy faculty forces her to relive each trouble more than is useful.  The Sister-Unit has become a faithful nurse, tending three bed sores, feeding a weak 81-pound matriarch.  Her partner has leukemia -- that's some punchline, eh?  He is doing well, however, though they are smartly close-mouthed about it.  He's a Prince, a Peach, a Pear, which is the highest accolade of my people.

I did not even consider asking to speak to Mom.  In my mind, likely as confused as hers, I am an abstract construct to her.  The child who caused so much trouble.  The child who said "thanks, but no thanks" some 24 years ago, and by letter, not phone.  I'd had enough, enough doublespeak, enough lies, enough suppression, oppression.  I was careful to express my real gratitude for the raising, for the good times, for the afternoon on the sailboat, for the tea and toast, for the tips on dumping drinks into potted plants at cocktail parties, and the admonitions to stand up straight and be proud of my height.

She taught the art of thank-you notes, of indexing social debts (keeping a tit-for-tat list of Christmas card recipients and a neat list of who attended what party and what outfit she had worn to each). She taught the power of obligation, the complexities of generations.  She was, too, a teacher. Of little ones, but they are the most precious of all.  I did a brief stint as a substitute in a second grade classroom and was more terrified than when I faced a room full of savvy, educated, bright-as-the-moon, inquisitive young men and women.  It was Mom's influence that tainted my university teaching with the same urge to protect and defend that comes so naturally on behalf of six-year-olds.  (Sometimes that was a problem.)

I wished the Sister-Unit good courage and good luck, as she fights for some semblance of coordinated care, hires nurses, and deals with an overfed dog now prone to urinary incontinence.  Oh, and a doctor who opines only the glaringly obvious and does not return her polite phone calls.  It's not his mother, what does he care?  Oh, I take that back.  He's perfectly competent.  There's nothing to do but muddle through.

The other mother, the biological Mother-Unit?  I don't call, or not often, and cannot face it today.  She's likely to make a perfunctory inquiry about her first set of boys, and I cannot spit out the perfunctory lies, not today.  Maybe I should call, but have ready the most non-perfunctory of retorts.  "Lumpy? After winning Wimbledon, he took a brief rest in Monte Carlo -- you know what a gamer he is -- before sporting the yellow jersey on the Tour.  Right now, he's gearing up for a stint as Compositional Inquisitor.  He gets to wear flowing robes and a pouffy hat, Ma.  Isn't that grand?"

Of the other sweet Brother-Unit, I could just wow her with the truth, but her dementia, like her normal state, won't admit too much of the stuff.  So I'd say something like: "He still proudly marches to the beat of his own drum and radiates compassion and equanimity into the wavelengths of the universe, Ma, just like I told you last time."

The third call?  To an evangelical busybody who delights in telling me what to do and then, in undermining my efforts.  This week she taught me a valuable lesson about trust, as in:  Don't do it.  So the third call was harsh but easy. Her proselytizing had brought her no Godly approbation, just the stench of manure spread on burning sulfur. That may be overstating the matter.  I'll let you know.

How am I?  How do you think?  I'm in terrible physical pain, my right hand and foot have seceded from the union, I cannot eat, barely drink, sleep in fits, spasm at the whim of invisible cattle prods, and am returned to the days of fever and sweats, lethargy. Despite that, I take my cue from my siblings, a hardy bunch, smart enough to know that the only way through is through. That there is still music, and that even death is funny.

I cannot bear much more of this, but we all know I will.  My piddling troubles are as nothing. I still recognize beauty and humor -- but they must be either exquisite or of admirable kitsch.




© 2013 L. Ryan

Tuesday, November 13, 2012

"generosity. be generous.": A Repost

Originally published Monday, October 19, 2009


does the universe conspire? (no, i think not.)
damn. this is another of my many blog posts that is pure therapy, a poor recalcitrant woman's version of therapy -- following the one terrible rule that -- once writ -- nothing can be taken back.
i just don't *do* "universe" well. there are few who can do it well. martin luther king, jr. did it well.
my favorite? "The arc of the moral universe is long, but it bends towards justice." see? see? what did i tell ya? king did a good "universe." he was probably thinking, "heck yeah! you can quote me! who said it? who said it? that's right -- i said it..."
i like to think that maybe he looks around, furtively, then pumps his right arm, and cries: "SHAZAM!"
martin "captain marvel" king!
so, no, the universe does not conspire in serendipity today. rather, the arc of my emotion -- it is fiendishly inclusive. there is nothing, nada, zilch that does not relate, if that's how i want it.
it's as simple, i suppose, as "whose blog is it, anyway?" if you want it simple, you could think that.

at 11 am, i sometimes watch ER reruns. lately, they've been approaching mark greene's death, that beautiful episode in hawaii.

it's a fiction. it's a t.v. show. he gets to die as most of us would like, a dream death. i think that as i lay dying, i'm going to insert myself into that scene. wouldn't that be a gas? i'll probably be alone on some cracked and yellowed linoleum, brain dead, gifted with nary a thought!
also, i am pretty sure i'll be leaking. stinky, maybe with a joint or two having exploded. dare i dream of immolation? i am one of those who *believe* in spontaneous human combustion.

an airy room, sun, wind, ocean. a porch that wraps around. sand, herbs, a little tiny baby. all the natural forces gathered to usher him out. his death has a great soundtrack, too. YouTube is constantly putting out the fire of unauthorized vids -- disabling the audio. it's rough 'n tough, YouTube.
i rushed out and bought israel's cd, with the "somewhere" medley. a friend also gave it to me as a gift the next week. brother-unit grader boob burned me a copy for christmas. it seemed to make me come to mind.

so mark greene gets to leave on the wings of that incredible lullaby.

it's only 11:34 am, in marlinspike hall, deep, deep in the tête de hergé (très décédé, d'ailleurs).

yes, the archduke announced yesterday an amendment to the name of the land, this delightful country where i am so blessed to be. from now on, marlinspike hall is nestled in the tête de hergé (très décédé, d'ailleurs). it has a good mouth-feel, it rolls in la bouche.

ah, so he has just seized... always a milestone, don't cha think?

elizabeth says; "maahhhk, you need a cat scan and a full workup!" i giggle.

then begin to weep again, as he says, "i don't wanna go back home. it's beautiful here, isn't it?"

yes, mark! stay there. opt for that!

then the anger rises again... i want to opt for that, dammit. and quick.

before my mother dies.

yes, before she exits, stage left. exeunt (because she shouldn't go out alone.).

do you know how much i owe my sister lale? unqualified, my sister. not half-sister. not sister-of-the-next-batch. not sister-who-blurts-out-everything. just sister.

i was thinking on that as i wept my way around the kitchen. cleaning. like a crazed woman. unfortunately, not a crazed cleaning woman... as in, someone who effectively gets the jobs done.

i smear.

rachel just lied to her dad.

"remember when i used to sing you to sleep?"
"no {all sullen-like}."

he doesn't stop, he knows better. she had a dog. there was a balloon. she had a grandmother.

"i don't remember, i don't remember any of that stuff. it's not important. it's useless boring useless crap, a dog named dudley? stop talking to me about it."

so it looks like pancreatic cancer, ain't that a bitch? i think myself so evolved, i think i know it all. i was happy to hear "pancreatitis," happy to think, well, good, now we know, now we can treat it, now she will get well.

i pushed to the back of my brain the thought, "why in the world would she have pancreatitis?"

it is NOT for sure yet. it will be for sure on wednesday. two days left to pretend. to practice saying "mother." "mom." it just sounds foreign.

now, lale. la-le. lollylolly! i can say "lale" all the livelong day!

back to smearing around the grease and dirt in the kitchen (the Medieval Kitchen, my favorite. but have you ever tried to clean a medieval kitchen? the spit alone has inspired centuries of baked on, smokey crud. mr. clean is a useless twit in our kitchens...)-- back to lale, my sister, what a neat, nifty person.

without her? i'd not be in touch with tumbleweed. i'd not even know he was alive.

without her? i'd not know, and perhaps, not care, that mother is [likely] dying.

i'd not entertain the notion of family -- beyond the beloved grader boob. this aunt, that uncle, those nieces and nephews galore.

okay, so there is some suspect parentage going on -- babies without fathers, teenagers of indeterminate mothers. who cares? at least all those people have been busy living.

i applaud them, i applaud you -- if you've been busy living.

"generosity. be generous."

those are the words mark leaves his daughter.

a brilliant legacy. it speaks to me, as i've not been generous but still have been blessed by those who -- effortlessly, it seems -- are. those who are. generous.

mother's late husband, necip -- easily the most generous man i ever met. he'd have been a great dad to have... and it thrills me, sometimes, to think of lale receiving that gift from him. he would smile to know how well she was schooled, how hugely giving is her good heart.
i promised to call again later today, as she said she was struggling "to keep [her] mind straight, in the right place."
i am going to give this sister thing a shot.


*****************************************************************************************

"...comment dire autre chose, autre chose que l'ímpossibilité de dire, comme je fais ici: moi, je signe..."

Billy Long, Rest In Peace



Billy passed away at 10:03am this morning




Castle Bridge, connecting Caldwell and Burke Counties in Western North Carolina





Guest Book for Billy Long – Online Guest Book by Hickory Daily Record and 


Billy Bradford Long GRANITE FALLS Billy Bradford Long, 57, of Granite Falls, passed away Tuesday, Nov. 13, 2012, at his home. Billy was born Nov. 28, 1954. He was a veteran of the U.S.Army, having served from 1973 to 1980. He is preceded in death by a brother, John Long; and his parents, Dale and Getty Long. Survivors include his wife, Joyce Williams Long; mother-in-law, Olivee Williams; sister-in-law, Jeannie Williams; brother-in-law, Michael Williams; three daughters, Misty Bentley and family friend, Michael Sebert, Christy Casco, and Shawna Williams; and three grandchildren, Brian, Aric, and Christopher; his brothers, Tony Long and wife, Linda, Gary Long and wife, Lisa, and Roger Long and wife, Damaris, of Conover; and Libby Silcox, and daughter, Jessi, of Hickory; and many nieces and nephews. There will be a memorial service held at a later date.

Friday, September 28, 2012

Joey Keller, Lego King of the World, Needs You RIGHT NOW

Hi all.  I went to bed worried about Joey, one of the four (okay, four "or so") pediatric cancer patients that I follow via the wonderful site CaringBridge.  You can go directly to his by clicking HERE.

His cancer, like every cancer, is a terrible one.

No, that's not true.  The first line of his "story" reads:  "Joey Keller is fighting multiple relapse medulloblastoma.."

He has one of the worst, but he has the biggest hunk of faith and derring-do that clearly comes from a slightly hyper father and a stalwart mom.  And his own joyful, humble little self, of course.  I forget sometimes how unique and -- sometimes for good -- alone these kids can be, despite the hurricane of activity whirling around them.  In their aloneness, they often develop god-sight and world-sight that puts adult vision to shame.

Such is Joey, Lego Kind of the World.

Last night, while his Dad was helping him take a bath, he suffered perhaps a stroke, perhaps a seizure, and became unresponsive.  At the hospital, he remained unresponsive, although he did begin to speak some, though what he was saying was incoherent.  He's in there, though, and that's the point.

They did a CT but really need an MRI.  He just had one recently, with fairly positive results in a very negative situation.  He has tumors of the brain and, almost more scarily, up and down his spine.

His Dad is in the allied health field (that's my impression) and is an avid amateur minister, investigator of God's promises, a tough friend to the deity.  He wears me out, frankly, and bless him for the drive to keep his Lord on his or her toes.  His Mom... she is balance, and I am sure she is sick of it.

I don't think anyone believes Joey is going to survive this cancer, and I hope his Mom and Dad won't reach through my computer screen with a wicked bitch slap.  But goodness, goodness, goodness, he deserves a conscious, peaceful death.  He deserves, they deserve, to feel connected to God, to feel that nothing has been left unsaid.

His Dad wrote, at some point during the night:  "He looks around a lot and seems like he wants to talk. We feel so bad for him. He's looking at me now, the light from hallway shining on our faces. I keep thinking my alarm clock's gonna go off, and ill wake up. or like less than 2 yrs ago, he'd walk up to the side of the bed and put his hand on our shoulders and gently rub our backs Till we woke up. This can't be real-"

So please, dearest readers, do what you do, so well, on Joey's behalf, and do it now.



UPDATE, 2 PM, 9/26/2012:  From Joey's Dad:  "Quick update. The meds needed to control Joey's seizures were stopping him from breathing. Very labored, and episodes where he would stop altogether. They moved us to ICU and intubated him for many reasons. They're gonna throw kitchen sink at stopping these seizures and on a ventilator they can't stop his breathing. Priority #1. We actually don't know if labored breathing is from the meds or the seizures. So gotta stop seizures. You know, I can't keep thoughts straight. Thx for prayers. As I get more info, I'll pass on so we all can be on same page with prayers. Thank you."

UPDATE, NOON, 9/29/2012:  "We just met with the lead ICU team, and wanted to get an update out on where we are at medically. I’ll try to remember all the details. She wanted to emphasize that the Joey we knew, with almost 100% certainty, will not be the Joey we see in the future. And without getting into all of the medical specifics, his brain has suffered so much trauma and injury, they think he won’t be at the “baseline” he was before the initial seizure in the tub. I want to mention too though, that the CT scan and EEG data don’t really show anything. They are going by the “posturing” we saw and some of the neurological deficits they see now. ALTHOUGH, they said in the first 24 hours (after incident or trauma) they always see patients getting worse. After that, we have about 4-6 days to see improvement (no guarantees of any improvement, or could see dramatic recovery, they really don’t know, medically.) They think after the first seizure, his sodium crashed and flushed fluid out of his brain, thus the posturing (and potential for brain damage/death.) This is really concerning. I was standing over him, alone, praying actually, when he went into that modeling pose and to think I was watching the fluid being flushed out of his brain, and possible assault to his brain makes me sick. SO, the fact that the CT scan and the EEG don’t show anything huge (like massive brain bleed) is a positive thing. Also, he pulls away from pain, pupils respond to light, he has been stretching, sometimes will open his eyes, heart rate goes up every time I talk to him, all are really good things. On the other hand, while the drugs he’s on are sedating, we found out, not so much that he couldn’t be waking up (over time, don’t know how much, but slightly concerned it hasn’t happened yet) pulling at the vent, irritated, etc. concerns them. But it could be too early to tell. She really didn’t know much, and we told her appreciated her saying that, other than he won’t be the same Joey we knew…but didn’t say what that would look like etc. Physically? Mentally? Or to what extent we would see those deficits."


Monday, September 10, 2012

Manor Keeping and Blog Chores



There are so many housekeeping chores that need doing to get this blog back in shape.

I promised to follow three things in particular -- news and developments about missing child Lindsey Baum; news and developments about Dr. Scott Reuben; and updated information on CRPS Clinical Trials.

Now, of course, I would add the four cancer kids that I follow, as well as the continuing truth that Dr. Jose Ochoa is a Turd.

And then, well, there is my fascinated hatred for creatures like Dr. Phil and Oprah, and my desire to wrench others away from their mesmerizing bullshit.  These are people of quality who just refuse to trust themselves, who have a tendency to love being on the receiving end of domination.  (What?  It's only the truth.  Domination, even cruelty, equals attention, and they have been denied attention their whole lives.  All they want is to be seen and heard -- no matter that they are being used, pimped, fucked.)

Of course, dealing with osteomyelitis and CRPS (the biggies) has completely taken over elle est belle la seine la seine elle est belle, whether I allow a safari vacation into Amerikan politics, French politics, socialist circles, or even the wild and woolly adventures we have in the various kitchens of Marlinspike Hall. My pus-dripping bones and my wildly contorting legs and hands trump the hell out of the Militant Lesbian Existentialist Feminists, even the three of them who'd switch teams in a New York minute if it meant they could hunker down with my oblivious Fred.  I did not fall off of the produce truck recently and although I was born at night, they had to use pitocin.

I've put life in The Manor and the many fascinating details of maintaining such a landmark on the blog's back burner, too, but, O! There are reasons for that and fear not, as soon as we are covered by the expected extensions of President Obama's Dream Act to us outlanders, Tante Louise will call off the surveillance.. Okay, so we're not young, but we are illegal, and we are immigrants.

We are squatters!

La Bonne et Belle Bianca Castafiore is so head-over-heels in lust with Sven, and they both are steadfastly and stealthily kept in view by Sven's lad Cabana Boy -- and to tell the truth, this has killed some of my desire to write.  They keep the air redolent with stinky tension.

I almost and by complete ACCIDENT killed myself yesterday -- by gentle respiratory depression.  Fentanyl patches, according to the manufacturer, are to be changed every 72 hours.  My pain guru wants me to change them every 48 hours.  I, of course, allow the earlier applied one to stay on an extra day, thereby milking out, or so I hope, every bit of pink-unicorn-fart pain relief.

The things do not stick well to my skin, mostly because I constantly cycle between being hot and dry, having sweats and chills.  Also, I bathe.  I bathe a lot.

Okay, this bothers me, so just let me get it out of my system, as if it were a bit of toxic fentanyl floating around in my psychic innards.  I love a bath.  I haven't been able to take a bath since... 2000.  I shower.  I use a shower chair and one of those wunnerful, wunnerful wand shower heads.  I leave the bathroom sobbing and usually have to take a rescue dose of endocet and climb in bed, praying and crying, snot all over the place, sweating, destroying that fresh, clean feeling a shower is supposed to impart.  Now, due to weakness and spasms, I shower twice a week.  I bathe at the bathroom sink twice a day, usually more often.  I use various antiseptic products, especially the ones that are commonly used as preop washes, trying to destroy any goddamn p. acnes bacteria hanging around.  I've been told this is a ridiculous thing to do, as well as impossible and perhaps undesirable... but I do it anyway.  I stomp on those toxic bastard bacteria.

Whew.  Okay.  Yeah, so bless my Stepmother who inculcated in me an obsession for cleanliness.  Captain Haddock sure gets his money's worth out of my hyperfocus -- there are no cleaner medieval tapestries than the ones hanging on his manor's walls.  I was born a maid.

Okay, let's reword that:  I was born with maid tendencies.  When I took career assessment testing in junior high school, the answer was always, "be a maid."

There are twisted ways that could have gone.  I clean up.  I believe I'd also have been a great assassin.  I used to maintain a list of People Who Need Killing -- but someone, somewhere, must have snagged a copy, because they all just sort of started dying without me doing a doggone thing.  And now, the world has changed so much, so quickly, that I am scared of making a mistake -- so no one has been added to the People Who Need Killing List since Pinochet died.  Six years of no entries.  A rusty assassin is a useless assassin.  Just ask Clint Eastwood, or the chair.

I spent the night screaming.  Pain. Muscle Deformations.  I kept dreaming that my Father, recently deceased, who had been dreamily safely ensconced in a federal prison, had been released and no one knew where he was.  I dreamt he was comin' after me.  Then I would wake to find my right leg jammed into the wheelchair, and my body turned on my left non-existent shoulder.  And so on and so forth.  I finally got up at 3 am, mad.  Mad at whom, I've no idea, but Fred was up, so I treated him to some of the door-slamming he so loves.  He didn't notice a thing, the benevolent abstraction!

So I decided to calm myself and quiet down the door banging by taking a shower.

At which time I discovered FOUR fentanyl patches, all firmly adhering to my skin.  All should have been neatly labelled with the day applied (I put a bandaid over them to help keep them on when the sweats and chills kick in, and write the application date onto the bandaid).

To the best of my muddled recollection, twice I thought the thing had fallen off, and so twice had replaced the supposedly missing pain patch with a new one.  And in each case, it was the bandaid that was gone, not the patch.  Yes, I had opened a new box of Made in the USA bandaids, a pharmacy brand that shall be henceforth banished from this usage, at least.

Yes, my eyes are that bad, also the patches are pretty much translucent.  I had been fretting about the cats, fearing that they'd find the fallen fentanyl "pain systems," lick them, play with them, and promptly die.  Sven, Bianca, and Cabana Boy?  They are more drinkers than druggies.  And Fred laughs at the idea that exposure to fentanyl could harm him.  I also had a good fret or two over the koi, thinking that maybe the patches went flying out some window and down into the moat.

We've banned the carnies and Cirque du Soleil habitués from entering The Manor, so I couldn't see how the true fierce addicts around me could have gotten hold of them -- and lately, they've all been confined to The Barn.  Long story.

Yeah, so I almost died, sorta.  I mean, I guess I could have.  I was certainly drowsy enough and snoring like a giraffe troubled by amplified adenoids -- before all the pain (despite four fentanyl patches) and contractions pushed me from the bed, to work, to a good sweat, to another shower.

The irony is that this week I am meeting with a lawyer to rework my living will, my standard will, my various powers of attorney, and seeking guidance on getting a DNR.

I can tell you that there is NO news about Lindsey Baum, that Scott Reuben chafes under the restrictions placed upon him (I'm sure it is a mystery to him why trust is so hard to come by), and if you want the latest CRPS clinical trials, it's easy -- just go HERE.  The only extra gifts I ever offered in my listings of the clinical trials were my not-so-expert opinions, and adding some suggested reading to better understand what was at stake.  But you, Dear Reader, don't require that.  It was more along the lines of me, as a high school sophomore, "showing my work" on a geometry test.  Yes, a "proof" of some kind.

Of the four young ones fighting cancer that I follow, Hannah is doing great, as is Kate (she shows no evidence of *any* tumor!), Braydon struggles, and the last young man will not live much longer.  I am also following a teenager, mostly because I saw her picture after she had died her hair a beautiful punk pink -- before losing it all, of course, by a new course of chemotherapy. She has relapsed but is kicking cancer's big fat butt by a punked out perky attitude, and by loving parents who never leave her side, and who pray all the live long day.  There are others -- you cannot help yourself, because the kids you follow all have blogging parents who do not cease to ask for your consideration for the kid in the room next door, or for so-and-so who has developed a nagging pain but whose MRI is not scheduled until October...  I can tell you that pediatric oncologists must have a healthy respect for parents and their "gut feelings," their intuition, their "something is not right with my child." In short, my cancer kids are doing better, as a group, than they usually are, and they are inspiring and uplifting, each and every one.

I posted a piece called "Billy" on September 5.  He's not a cancer kid, he's a cancer grown-up!  He has stage 4 lung cancer, and I will save my speeches on smoking, because, as an ex-smoker, I do understand.  No, not true, he continues to smoke, and THAT, I cannot fathom.

Anyway, Dear Readers, Billy and Joyce are an odd couple, getting closer now that it is too late to say their marriage was a good one.  But they do understand one another and they do love each other.  She has carried on her back the welfare of two grown daughters, both of whom refused to leave home, one of whom has three boys, all with what we like to call "issue." Joyce's siblings and other close relatives all struggle with addiction.  She is raising one of her sister's children, which is the working miracle in that child's life, because Joyce never gave in to addiction, never gave in to the lifestyle and values around her.  So Shawna is a star student with a bright future.  Joyce is disabled now, living entirely on entitlement programs, as is everyone in the family, really.

Billy is schizophrenic.  He is a U.S. military veteran.

They have *nothing* but the items in their apartment, in material terms.  No vehicle.  The vast wealth of their benefits tend to run out before the month does.

And now he has been dumped there, in a hospital bed, with oxygen, a walker, and all that good stuff.  Hospice is supposedly on the case, but mostly they have dumped him, too -- telling Joyce to do this, this, and this... and Joyce is sick and tired, and also still overseeing her girls and her three grandsons.  She has to walk everywhere, and most of her pain is centered in her legs and back, so those walks, that she used to love, are now akin to traipsing from Bataan to Corregidor.

Give them some money.  Christina, one of Joyce's daughters, has set up a fundraiser through the very legitimate FundRazr.  Ask questions, if you are dubious.  Give a dollar, two, or three.  That's more than they have, even after digging under the cushions on the sofa.

Listen -- they save stray cats.  They keep those sons and grandsons in scouting, in church.  They guard their innocence fiercely.  They tend to Billy as best they can but are obsessed with not having the money to bury him.  Joyce hates vegetables.  Her other daughter is mentally ill but helping out as best she can.  Shawna's biological mom is back on drugs and as recently as yesterday, Joyce forced her off the premises with the instincts of a good, protective parent.

The problems are a burden even to listen to.  But they're real... and Joyce has begun to turn her life around, and where her life goes, all those other lives glommed onto her for sustenance?  They get turned around, too.
I don't want to see one iota of the beautiful progress this beautiful woman has made degraded by something as obscene as CANCER and a Veteran's Administration that just doesn't give a hoot.

That's about it for me right now.  One of the 843 smoke and carbon monoxide detectors in Marlinspike Hall is chirping, letting me know it's in need of a fresh battery.  I'm going to get The Gun and shoot it.  As soon as I find it....

Wednesday, July 18, 2012

A Rewrite: Dad laid down and went to sleep

Brother-Unit Grader Boob has returned to his own Home Land after seeing to the Father-Unit's cremation and memorial service, whose attendance was apparently mostly made up of beach locals:

"[A] waitress from their favorite eatery, the guy who does their lawn, their Mr. Fix-It, the brokerage guy from their bank, some guys he hung out with and drank coffee with down at the local BP station..." and a smattering of actual relations.  I'm betting that the waitress knew him best.  I'm betting he smoked when he dropped by at odd hours, alone, ordering some "regular" food item that she prepared just right.  He was a sucker for lemon pie -- maybe he developed a thing for the more available key lime -- the lemon pie was a specialty of his mother's.  Lemon Ice Box Pie.  Awfully graham-crackery and pucker::pucker tart.  But it was "hers" so we "loved" it, air quotes proving our citric credibility.

A scattering of his ashes is planned for Atlantic waters, and there don't seem to be a bunch of laws standing in the way.  Not like over at the western end of that state, where some weenies decided to regulate drifting cinders.  That was my first choice, somewhere (actually, "somewhere" very specific) along the Blue Ridge.  Then a California friend, a busy mother, ceramic artist, perpetual redesigner of kitchens -- but reportedly, by kin, even, a god-awful baker -- someone who eventually went to med school and, I'm willing to wager all my investment income -- income so piled high upon itself that it is seeping out of my Gringotts Wizarding Bank magical money jail cell -- solves more medical mysteries over coffee in her torn-to-pieces kitchen than in some speckled formica-ed San Franciscan examination cubicle...

My train.  That damned train of thought.  Choo!  Choo!***

Anyway, Margaret, this California friend, began sending me a local artist's series of Point Reyes note cards, a national park, a "national seashore." A shore, headlands, grasslands, beaches, a forest, even.  [I am notoriously challenged directionally... A trip up the PCH** meant the Pacific was on the left, the forests on the right.  The return trip required the PCH to be on the right, the woods to my left.  The weeping driver asking for directions, thank God, was *always* to my left, as The Great American Writer Wannabe refused to allow me to drive his Mustang.

Margaret wasn't campaigning that I scatter my ashes anywhere in our nationally shared Point Reyes park.  It just came to bright me, it came as a longing, as a fulfillment.  And it turned out to be a pain in the caboose:


• A permit is required for all areas. 
• Remains to be scattered must have been cremated and pulverized. 
• Scattering by persons on the ground is to be performed at least 100 yards from any trail, 
road, developed facility or body of water, and 440 yards seaward from the shoreline on 
the Pacific Ocean. 
• Scattering from the air will not be performed over developed areas, facilities or bodies of 
water and will be performed at a minimum altitude of 2000 feet above the ground. 


Just at that point in your After-Existence when you're looking for the few people left who love you to have a freeing moment, a laugh in the wind?  Bullet points.  And I gotta say, "pulverized" kinda kills the good mood. Of course, I suppose that if my already cindered remains were not put through some huge spice grinder, I'd shift from a figurative to a literal portion of the Giant Floating Garbage Patch.

I do appreciate, though, the posting of allowable driving speeds.  It reads like a marvelous poem:


15 MPH: 
• The unpaved section of Mesa Road 
• Oyster Farm Access Road 
• Mount Vision Road 
• Estero Trail Access Road 
• Marshall Beach Road 
• Sacramento Landing Road 
• Chimney Rock Road 
• The following sections of trails open for administrative vehicle use: 
• Sky Trail (from Limantour Road to Sky Camp) 
• Bear Valley Trail (Bear Valley Trailhead to Glen Junction) 
• Coast Trail (Limantour Road to Coast Camp) 
• Drivable sections of the Inverness Ridge Trail (Limantour Road to the Mt. Vision 
Road) 
• Marshall Beach Trail 
• Stewart Trail (including Glen Camp Spur Trail from Stewart Trail to Glen Camp)  
• Lighthouse Road from the parking lot to the Lighthouse Visitor Center 
• Bolinas Ridge Trail 
• Randall Trail 
   
25 MPH: 
• Limantour Road (Sky Trail to Limantour Parking Lot, including the road to the southern 
parking lot) 
 

Yeah, so now?  Just put me in a cardboard box, mix with some perlite -- me and some Home Depot volcanic glass -- and plant something that you don't think I'd kill.

Brother Grader Boob wrote this about the Father-Unit:  "Sometime early in the morning of July 3, he got up and went over to his spot on the couch in the living room, laid down, and went to sleep and passed away. Mom found him when she came upstairs."

Photographic evidence shows that he was skinny beyond belief.  I doubt now that he strolled much on the beach, his front lawn, because he surely would have been lifted high as a kite.

I guess Brother-Unit Grader Boob has scads of photos and such to go through -- the inevitable gift to the family photographer (They've never seen TW's work). To lighten things up, and to make me snort coffee up my nose, he sent his "current favorite" of the degrading pictures:





I actually remember that day. We'd been out shopping for carpets for the Father-Units' parents, and someone clearly thought I looked great in shades of eggplant.  I hope to goodness that that was not the carpet we chose.  The box, I believe, was a gift from a stinky cigar-smoking uncle named, quite inappropriately, "Happy," and his wife, the lovely, sweet Doris.  It was a piggy bank.  Without the piggy.  It did some sort of magic trick -- you know, like it took your money and disappeared it.

The funeral, Grader Boob said, was very much against Father-Unit's will.  I wish I knew more as to why he did not want one.

You may not remember [!], but I dreamt of Dad's watch a few nights before he died.  In the dream, it was simply heavy, silver, and nothing special.  Here is a close up of the apparently meaningful item (no matter the number of times I insist on its ordinariness):





Various peer-reviewed studies suggest these interpretations:
--To dream of a watch is a symbol that you are too caught up in structure. Control, rules, and laws rule your day. You are unable to relax and let go. 
--A generation or two ago, a gold watch was the standard gift presented to a valued employee at retirement. So in this sense, a dream of a gold watch would suggest that something was coming to a good, satisfactory conclusion. Alternatively, any watch or clock represents time and gold symbolizes great value. Together they represents the value of time.  [Please note that, in my dream, there was no allusion to "gold" or "great value";  In fact, the opposite asserted itself.]
--Being late or early (or a fear of being so), short on time, or having too much time, or the idea of adhering to a schedule.

Oh, all right.  It's not hard.  I lost my time with him, I ran out of time, but maybe, maybe, maybe -- there is something that is timeless?

__________________________________________________________________________________________________________________________________________________________________

***One day when we were on the subject of transportation and 
distribution, it came Bolenciecwz's turn to answer a question. “Name 
one means of transportation,” the professor said to him. No light came 
into the big tackle's eyes. “Just any means of transportation,” said the 
professor. Bolenciecwz sat staring at him. “That is,” pursued the 
professor, “any medium, agency, or method of going from one place to 
another.” Bolenciecwz had the look of a man who is being led into a 
trap. “You may choose among steam, horse-drawn, or electrically 
propelled vehicles,” said the instructor. “I might suggest the one which 
we commonly take in making long journeys across land.” There was a 
profound silence in which everybody stirred uneasily, including 
Bolenciecwz and Mr. Bassum. Mr. Bassum abruptly broke this silence 
in an amazing manner. “Choo-choo-choo,” he said, in a low voice, and 
turned instantly scarlet. He glanced appealingly around the room. All of 
us, of course, shared Mr. Bassum's desire that Bolenciecwz should stay 
abreast of the class in economics, for the Illinois game, one of the 
hardest and most important of the season, was only a week off. “Toot, 
toot, too-toooooootf” some student with a deep voice moaned, and we 
all looked encouragingly at Bolenciecwz. Somebody else gave a fine 
imitation of a locomotive letting off steam. Mr. Bassum himself 
rounded off the little show. “Ding, dong, ding, dong,” he said, 
hopefully. Bolenciecwz was staring at the floor now, trying to think, his 
great brow furrowed, his huge hands rubbing together, his face red.
“How did you come to college this year, Mr. Bolenciecwz?” 
asked the professor. “Chuffa chuffa, chuffa chuffa.”
“M'father sent me,” said the football player.
“What on?” asked Bassum.
“I git an allowance,” said the tackle, in a low, husky voice, 
obviously embarrassed.
“No, no,” said Bassum. “Name a means of transportation. What 
did you ride here on?”
“Train,” said Bolenciecwz.
“Quite right,” said the professor. 


-- "University Days," James Thurber


**State Route 1 (SR 1) is a major north-south state highway that runs along most of the Pacific coastline of the U.S. state of California. Highway 1 has several portions designated as either Pacific Coast Highway (PCH), Cabrillo Highway, Shoreline Highway, or Coast Highway. Its southern terminus is at Interstate 5 (I-5) near Dana Point in Orange County and its northern terminus is at U.S. Highway 101 (US 101) near Leggett in Mendocino County. Highway 1 also at times runs concurrently with US 101, most notably through a 54-mile (87 km) stretch in Ventura and Santa Barbara Counties, and across the Golden Gate Bridge.
The highway is famous for running along some of the most beautiful coastlines in the USA, leading to its designation as an All-American Road. In addition to providing a scenic route to numerous attractions along the coast, the route also serves as a major thoroughfare in the Greater Los Angeles Area, the San Francisco Bay Area, and several other coastal urban areas.


SR 1 was built piecemeal in various stages, with the first section opening in the Big Sur region in the 1930s. However, portions of the route had several names and numbers over the years as more segments opened. It was not until the 1964 state highway renumbering that the entire route was officially designated as Highway 1. Although SR 1 is a popular route for its scenic beauty, frequent landslides and erosion along the coast have caused several segments to be either closed for lengthy periods for repairs, or re-routed further inland.

Tuesday, April 3, 2012

"Thank you" will do nicely

I don't think anyone will hear my last words. I will probably be in the bathroom, water running, bubbles in the air -- that odious cheap perfume of the cheap shampoo I begged for, everywhere, in every steamed-open, gaping pore.

Or my audience will consist of cats. A faithful audience and not one to regret, however, I estimate that one of the three currently in residence suffers from a hunger so gnawing that he'd eat me within ten minutes of my surcease. Sure, he'd hold the chipped and sharp-edged round make-up mirror to my mouth, hoping against vapor. Lacking any sign of life, the felines know the ultimate test and Dobby will surely wave a mug of steamy dry-processed Haile Selassie from the Dara area of Ethiopia's Sidamo province under my deceased nose.

Yes, I have been dreaming of a trip to the Farmer's Market Coffee Pavilion.

If Fred finds me, I predict he will promptly take a nap -- after tossing a sheet over me, shooing away the cats, and shutting the door. If I am in the bedroom, he'll crash on the sofa in the library. Or maybe on the futon up in the Computer Turret, though that's a bit far to ask someone in the early stages of mild euphoria to travel.

Anyway, presuming myself, and my self, alone, to be my ultimate audience, what will I say, I wonder? I decided to practice this morning, though I stress to you, Dear Reader (You seem so far away, so dim... come closer!), that this is not theater. No "magic if," no method.

First, though, I laugh, because what I just said to you, I said to myself, as well, and realized how foreign, how divorced from who-i-am is the idea of no theater, no "magic if," no method. Because the first thing I did was the first thing I always do when beginning any inquiry: I begged the question.
Begging the question (Latin petitio principii, "assuming the initial point") is a type of logical fallacy in which a proposition is made that uses its own premise as proof of the proposition. In other words, it is a statement that refers to its own assertion to prove the assertion.
No, no need to get all Aristotelian on me, now.  All I mean by that,  is this:  Why do we say anything?  At any time, to anyone, including to our lone selves as sole interlocutors?  I am not begging the question; I am raising others.  Try and stick me, and in my dying moments, too, with a logical fallacy, will you?  If you applied yourself, I am sure you'd realize that what I'm actually guilty of is... Applied Circuitry.

Oh, I am cracking myself up, and I haven't even started yet.  You don't like "circuitry"?  Okay, use "circuitousness," instead, but it's an ugly word, and I mean that in the nicest way possible.

The first thing that comes to mind is that I will utter some strange neologism, or, as I just demonstrated, I'll misuse some established idiom -- not trying to be clever, just doing what I've always done, cavorting in the margin.  Most likely, whether neologism or perversion, it will come out garbled.  Gobbledygook. 

For some reason, I also think it likely that I will say "Who knew?" --  then give half a laugh, and croak.  Dying mid-laugh has a certain appeal.

What is certain?  Well, it won't be drawn out, or consist of the terribly polysyllabic.  One of the first things to go, you know, is the vital blood supply to the tongue.  So even if your brain isn't completely anemic, your mouth most likely won't cooperate much with complicated goings-on at the tail end of life.  In the bathroom, whiffing lavender suds, wondering who will clean The Manor now, and just generally at wit's end, I won't be inclined to recite the Krebs cycle.

Everything changes, of course, if I am not alone.  Then, be my company animal or human, I think there is only one thing to say:  Thank you.  And maybe, though it seems a little persnickety, "Good luck!"

I would not, though, say it to all life forms.  I would not, for example, say it to an ant, and never, ever to a roach.  O God! Save me from a roach, there at the last!

There are many of you who think I am missing the point.  Do you accuse me of circumlocution, and of having dropped the point off mid-escapade?  Or do you think I never knew the point, and my circuitousness is a failed attempt to mask how utterly lost I am, and will be?  Shouldn't I speak to God, at the moment I come undone?  Well, smarty-pants, that may work for you but I've always felt immensely silly, forcing words on God.

I just don't know.  I do think that last words, thoughts, and expressions don't carry the import that the living give them -- unless, of course, you're identifying your murderer, making a heartfelt confession, or telling Fred the password to the Fidelity account.



We must try to have everything said -- an option that allows for different last words and differing final conversations, attentive and thoughtful, each. Failing that, I think "Thank you" will do nicely.

Today, right now, I am not convinced of the inappropriateness of laughter, or of the stony nature of silence.

In all likelihood, my ending will encompass, but not reflect, the surprise of oncoming traffic, the shock of a gun barrel, or the crushing pain of an infarct.  The blessing of fading into sleep, quiescent, seems a childish hope now, but I do still hope for it. Slipping away during a nap could save me a lot of embarrassment.