Welcome to Marlinspike Hall, ancestral home of the Haddock Clan, the creation of Belgian cartoonist Hergé. Some Manor-keeping notes: Navigation is on the right, with an explanation of the blog's fictional basis. HINT: Please read the column labelled "ABOUT THIS BLOG." Enjoy the most recent posts or browse posts by posting date in the Archives. Search the blog for scintillating, obscure topics. Enjoy your stay! There are some fuzzy slippers over there somewhere, too.
Saturday, March 16, 2013
i cannot forget her
Two nights in a row of bitch-slapping is excessive. But my anger at the leg and arm choppers from last night has been reignited this evening over the renewal of a memory I'd much much rather forget.
When Andrea Gianopoulos died in Mexico after her second ketamine coma treatment, I wrote rashly about it, and I hurt and angered her family. I cared, and their feelings and anger mattered, but so much was wrong with both the German wing (then suspended) and the Mexican wing of the ketamine coma "trials" that I cared more about getting the word out.
I just ran across another blogger's post from January 2012 that was written with the approval of Andrea's mom Leslie. It is to be noted that the blogger, Nancy Cotterman, had her attention drawn to Andrea's death by these words of Leslie's posted at my favorite place, Facebook {shudder}:
"My daughter died from the Ketamine coma treatment"
I don't want to reinvent the wheel, hurt the Gianopoulos family even more. I have the same intentions to which Ms. Cotterman lays claim:
Andrea, I hope that your story will cause people to stop and think about all of the risks before they make the decision to go to a foreign country with a less sophisticated health care system than that of the US. Again, I'm not saying that we shouldn't go. I'm saying that we all need to do our homework and know everything that we can about the treatment, the facility, the doctor, the risks, etc. before going to have the treatment. You need to weigh the quality of life that you currently have against the potential risks of the treatments. Ultimately it is your decision and it should be an informed decision.
Perhaps when Leslie and Gus are feeling stronger, they can join us in our fight to get all insurance companies... to cover Ketamine here in the US. Had Andrea's insurance company covered her outpatient follow up Ketamine after her trip to Germany PERHAPS (of course there is no way to be sure) it could have held her coma treatment. If, like Jon Haag, coma treatment were available here in the US PERHAPS (again there is no way to know because people die here in the US too) coma Ketamine would be safer. At least, we wouldn't have the expense of paying out of pocket, travel and treatment would be available to more people. The more a procedure is done, the safer it becomes.
There's no claim on my part or anyone's that the liaison folks in Tampa or the "trial" supervisors in Mexico did anything wrong.
There's loads of evidence that it is pure nonsense to call this activity a "clinical trial" or to claim that strict protocols are being observed. That's where the bitch-slap comes in... again.
Andrea had already had one coma treatment, in 2002. It failed to work, one supposes, because she had no access, financially, to the booster treatments that are supposed to be so crucial to the continued success of the coma. Huge,.freaking break in protocol, right there.
That she went on to get so much worse, I regret, and regretfully, understand. But what continues to freaking escape me is how, after heart surgery for a bad valve -- adding a significant comorbid condition -- she flies to the top of the list again for Germany. But those "clinical trials" having been shut down due to Laura Becket's MRSA and paralysis (which could have happened anywhere, to anyone), somehow Andrea again rose to the top of the list for Mexico.
There are doctors and administrators who have made a lot of money on this compassionate outreach, and that is why protocols matter, that is why a tragic story should not have put a young woman's life at risk, and that is, perhaps, why this needs to stop.
There is enough evidence now that ketamine helps some handpicked patients (only of Dr. Kirkpatrick? only of Dr. Schwartzman?) that the trials, properly set up, strictly supervised, and sufficiently cold-hearted to be fair in their provision of access need to be brought to the U.S.
People are told there is a two year wait to see these CRPS gurus -- and they are the disease wizards -- but if you happen to also be monied and all that goes with, my how those limits disappear, the other waiting lists for the coma trials magically shrink.
I know this is the way of the world. I bitch-slap the world, then.
My previous writing -- very raw -- about this topic can be found HERE. But not much has changed since I banged a different keyboard back in 2009:
How dare I intrude on the death of this lovely girl? Why can't I leave it -- her -- alone, in peace? In part, it is because of the evident lack.
There is nothing but silence around this death, hardly anything beyond the barest of acknowledgements.
Or the most private of them. The nearest and the dearest. And to them, I apologize -- no, rather I beg pardon, for this prurient interest -- not in Andrea, but in what happened *to* Andrea.
The ketamine coma trials... that is what we are made to say, you know -- "the trials."
How many other legitimate "trials" cost well over $50-60,000? How many other legitimate trials cost ANYTHING?
How many other legitimate "trials" suffer a death and allow it to pass into silence, unexplained?
There has also been a high incidence of infection, particularly respiratory -- aspiration pneumonias.
Oh, and how many "trials" make way for someone to repeat the treatment, the benefits of the first time around apparently not having lasted? How was that expressed in the data collection of the second coma? Was the first treatment before the days of the "trials"? You know, back when a person basically only had to produce the money, and be sufficiently young and healthy (beyond having CRPS)? Wait... am I getting it all confused? Because it sure seems like today's requirements are eerily... no, *exactly* the same -- young, otherwise healthy, cash in hand.
My prurient interest has its roots in anger and envy -- as well as in a more legitimate need for information that was not forthcoming from those running the programs.
I cannot forget Andrea. I cannot forgive the shortcuts that cut her short. I cannot believe it has been so successfully buried, the truth.
Wednesday, March 13, 2013
Bitch-Slapping is a Blitzkrieg
Sometimes you just wanna reach through the screen and issue a sharb bitch-slap.
As often as I "joke" and invite my Dearest of Readers to the latest Do-It-Yourself Amputation Tea Party, I get royally pissed at the attention the press visits upon people with CRPS who actually do proceed with amputations, guided by some pissant of a failed surgeon who needs money for Junior to get into Harvard.
The monetary costs and rewards will never end, not with the chopping of digits, forearms, feet, or legs, whether above or below the knee. Now, try taking the head off, and you might have an idea that works. But until then, CRPSers who amputate are funding vacations and providing for their own certain future misery.
I do not know this woman. I admire her athletic accomplishments. I applaud her for finding sport as, apparently, a means to pain greater than CRPS and phantom limb's joys, together, thus allowing her "diversion" from the original CRPS pain. As logic, it blows! And so, of course, it's tragic and therefore news.
And tragic, high-profile news never, ever gets CRPS right. Hell, most of the scientific disciplines are ten years behind the research-proven realities, so why should any blogger or popular press inker get it "right." I love the introductory reference to this scary disease: "a rare and aggressive condition which causes her body to reject its own injured limbs." Oh, bloody hell, let me at 'em!
Were there some transcendance over pain by the endorphins of Rachel Morris' handcycling, had her original pain not been compounded by some idiot's notion of a cure, I'd be proud to tell her story. As it is, I am glad that, despite my jokes, I've put the word out often enough that amputation most often aggravates the existing neuropathic pain while adding the out-of-this-world, mind-bending situation of Phantom Limb pain.
Anyway -- that most favored segue! -- here is the tale of Rachel Morris, paraolympian:
Rachel Morris doesn't cycle for fun. She does it to make the pain bearable.
The 32-year-old has already lost both of her legs to a rare and aggressive condition which causes her body to reject its own injured limbs.
Now, after a training accident last month in which she dislocated her shoulder, she is worried she may lose her arm, too.
In her position, you would be forgiven for wanting to shut the door behind you and never come out again.
But Morris, who operates her bike with her hands, needs cycling. It is her life, consuming and sustaining her.
"Handcycling is more than a sport to me," said the Paralympic time trial gold medallist as she prepared for the sport's World Championships in Roskilde, Denmark.
"It's a way of managing the pain. Without it, my life becomes unmanageable. And it's what I do - it's what I get up to do in the morning, it's what I go to bed at night thinking about. It is me."
Her mother, Hilary, added: "She's driven by it. People say how wonderful it is when they see her out training at five in the morning. 'Yes,' I say, 'it is wonderful - but it's for pain control.' And then they think, 'Ooh. Gosh.'
"But she has to do what she has to do. Part of her pain management is to push her body hard, distract herself and release endorphins into her brain which help control the pain.
"She's driven by the pain to a great extent so you can't hold her back, because you can't let her have any more pain. She suffers every day, all day, anyway."
Morris's troubles began in the most terrifyingly innocuous of circumstances as a teenager.
"All I did in the beginning was twist my ankle on a dry ski slope," she says, apologetically. "It's quite embarrassing, it wasn't even on a snow-covered mountain.
"From that I had an awful lot of problems which weren't picked up at the beginning - my condition is a strange thing, especially the way mine ended up going - and unfortunately it's ended up with me having multiple amputations."
The condition goes by several names, two of the most common being Reflex Sympathetic Distrophy (RSD) and Complex Regional Pain Syndrome.
Since it began destroying Morris's legs she has had to move from sport to sport, each time accommodating a new level of disability. Her childhood love of athletics became a passion for sailing but, once she lost her second leg, road cycling was identified as the way forward.
She lives life, and competes, in near-constant pain.
"There are two sorts of pain," she explained. "One is from phantom limbs, and one is a pain inside you that has the same intensity as catching your arm on the oven or an iron.
"The first one gives you strange feedback where your limbs were, as though your foot is facing the wrong way or twisted around, and I feel that a lot with my left foot. Obviously, I've got no legs but it's incredible what your brain will do: in the night I'll wake up with cramp in my foot and reach down. It's so real, you reach down thinking that your leg is there.
"The other pain is far more a burning pain which combines with what I call 'white pain'. That's when the pain is so powerful that there's nothing you can do about it, it'll make you drop anything and stop."
In the month leading up to the Worlds, things became even worse. Morris slid off a wet road on a training ride in Bath and dislocated her shoulder.
As she told us how the crash happened, it only slowly dawned on me that while dislocated shoulders are unpleasant for anyone, for Morris they must be particularly significant. I had to ask: if Rachel's body has in the past rejected injured limbs, and she has just injured a limb, is she not worried?
"Causing this injury to my body could, potentially, trigger the same reaction that's happened in my legs, and cause the RSD to become active in my arm. Obviously I have no legs, so the worst-case scenario is that it could do the same thing to my arm," she replied.
"I've become almost paranoid about the colour of it or watching the temperature, which are two of the things that change early on. So I have become very, very worried."
A week later, Morris crossed the finish line fourth in her first race at the World Championships, her body shaking and writhing with the exertion for a good 10 minutes afterwards.
Though disappointed not to win a medal, back in the British team's pit area she seemed happy to have made it through the race.
"The best bit is my shoulder made it round the course. I came out and completed something I didn't think I could have done two weeks ago. I didn't do it as I would have wanted to, but I couldn't have done any more as I am at the moment."
A bronze medal in her second and final event, the road race, is something although - for last year's world champion - settling for one third-place finish was clearly immensely frustrating.
For more reasons than most, Morris is compelled to give everything she has to her sport. Next year, she would hate to settle for a bronze medal. But first she must get herself to the Paralympic start line safely, and that means almost 12 months of waking up and tentatively inspecting the suspect shoulder.
"I've got to think of next year," she says. "That is the ultimate goal for everyone and the pinnacle of my career, so I do have to be careful and protect myself for that.
"If that was taken away from me, I think that possibly is the point at which I would give up. Which is quite a terrifying thought, because the Games have so much power and so much emotion that does drive me on. Next year is massive in lots of ways."
I'm prepared for hate mail, though I don't really get used to it, and get more of it elsewhere than here. More likely, Morris will never know her draconian story has reached the publishing heights of elle est belle la seine la seine elle est belle. It's such a hidden jewel, this blog.
Maybe that's best, that this post be buried in obscurity, because the best competition I could offer might be wheelchair MMA, and she doesn't stand a chance. Bitch-slapping, in my world, is a blitzkrieg, and there is no fighting back...
So, a refresher:
Deal with neurologists, not surgeons (those who know my story are now on the floor, spewing good food and drink that might feed the hungry in North Korea).
Understand how CRPS works, and keep up with the new understandings that will be out next month. Note that none of them advise chopping up or off your peripheral limbs when the problem is actually in your central nervous system.
Now should you so neglect the hygiene and necessary stimulation of your affected limb that it becomes gangrenous, soupy and stinky? Okay, fine, cut it off. But that's your fault. Be sure and keep the resultant nub all scrubbed and shiny, free of pathogens, and then you, too, can delve into the world of finding new distractions for intractable pain.
If you prefer the calm, dulcet tones of a doctor person, and here, I am switching to my singsongy NPR voice, listen to Doctor T. Howard Black, who softly and kindly explains, herself a bit out of date:
The only reason I have ever seen in the medical literature for CRPS-related amputation was due to gangrene and the resulting necrosis of the tissues.
CRPS does much of its damage by causing vasoconstriction, especially peripheral (in the extremities). When the veins are squeezed so that their diameter is much smaller than normal, the blood returning to the heart can't do so rapidly enough, and when any tissue is deprived of a stable, reliable source of O2, it dies.
The lack of fresh blood circulating to the extremity also causes the drop in temperature, and you're right - it doesn't just feel cold, it really is cold. That's why, during epidural spinal blocks, the temp. of both feet, hands, whatever are monitored, and when the block exerts its effects, the temp. of the CRPS part gets quite warm.
In fact, it often overshoots its normal temp., which feels *wonderful*. During one of my blocks, the temp. of my right foot went from 94 to 102 within 2 minutes!
I've never seen any other medical reason for someone to have a CRPS appendage amputated; the consensus of the medical community is that, despite the rare loss of pain accompanying an amputation, the far more common outcome is the CRPS pain continues and is often complicated by the addition of phantom limb pain. One of the most horrible things I can imagine is having full-blown RSD and adding phantom limb pain to it in the same location.
Monday, March 11, 2013
"the disinhibited brain"
PHOTO: Building Tests -Baudelaire Enivrez vous |
i confess to loving the title of this slightly dated article on CRPS -- mostly because when i was tutoring local university students (we live in a university mecca; marlinspike hall is the virtual epicenter of an educational glut), i always explained that students over 21 could not learn french without the assistance of a good red (or white, whatever we had brought up from the cellars that day) wine.
holding forth as i poured, always into the appropriate crystal glass, eyes shining in the candlelight (because who needs to see the book, anyway?), i would explain that learning a language after the age of three or four required a high degree of disinhibition. this would always be followed by a grandiloquent recitation of baudelaire {hi, TW!}:
"Enivrez-Vous"
Il faut être toujours ivre, tout est là ; c'est l'unique question. Pour ne pas sentir l'horrible fardeau du temps qui brise vos épaules et vous penche vers la terre, il faut vous enivrer sans trêve.
Mais de quoi? De vin, de poésie, ou de vertu à votre guise, mais enivrez-vous!
Et si quelquefois, sur les marches d'un palais, sur l'herbe verte d'un fossé, vous vous réveillez, l'ivresse déjà diminuée ou disparue, demandez au vent, à la vague, à l'étoile, à l'oiseau, à l'horloge; à tout ce qui fuit, à tout ce qui gémit, à tout ce qui roule, à tout ce qui chante, à tout ce qui parle, demandez quelle heure il est. Et le vent, la vague, l'étoile, l'oiseau, l'horloge, vous répondront, il est l'heure de s'enivrer ; pour ne pas être les esclaves martyrisés du temps, enivrez-vous, enivrez-vous sans cesse de vin, de poésie, de vertu, à votre guise.
(Les petits poèmes en prose)
[i've changed my mind several times, but i think richard howard has the best translation. go find it.]
granted, the students who were in the first week of french 101 guzzled their wine and ran out the door, but the rest usually stayed on for a few months, or until they brought their average up to a C.
adults don't like to make mistakes. we are uncomfortable, embarrassed. you cannot learn a language, you cannot USE a language, even the one you've heard and spoken your entire life, even if you are the most educated of the educable. so, really, have a beer, take a toke, whatever. remember that the point is to communicate. you might get a star on your paper for perfection but there are no trophies for the one who sits there, prim, silent.
break eggs, make omelettes.
for a while, i tutored this FBI agent and (kinda) his wife. she'd "accompany" him and follow the lesson from the other end of the table, even participating in exercises and conversation, and i always felt like billing her, too, but hell, he was an FBI agent. he was big into disinhibition, though, bless his FBI heart! chablis was his choice, but he did okay with poésie and, being FBI 'n all, probably vertu, aussi. brent something. they had me and fred over for dinner where we got into a weird conversation that always reminds me of the dinner scene in la cage aux folles.
so anyway, these scientists have come up with the notion of CRPS being caused by a brain gone completely wacko, disinhibited as all get out. it's a brain that will allow you to feel EVERYTHING!
you'd probably like to read the article, huh? okay!
The 'Disinhibited' Brain: New Findings On CRPS -- A Disease Characterized by Severe Pain
Complex regional pain syndrome (CRPS), also known as Morbus Sudeck, is characterised by "disinhibition" of various sensory and motor areas in the brain. A multidisciplinary Bochum-based research group, led by Prof. Dr. Martin Tegenthoff (Bergmannsheil Neurology Department) and Prof. Dr. Christoph Maier (Bergmannsheil Department of Pain Therapy), has now demonstrated for the first time that with unilateral CRPS excitability increases not only in the brain area processing the sense of touch of the affected hand. In addition, the brain region representing the healthy hand is simultaneously "disinhibited."
The researchers, who have been performing research on and treatment of CRPS for a number of years, are reporting the new findings in the journal Neurology. The study was supported by the Research Funds of the Deutsche Gesetzliche Unfallversicherung (DGUV).
Is there a predisposition for CRPS?
CRPS can develop after even slight injuries and often leads to long-lasting severe pain, impairment of sensation and movement, as well as changes to the skin and the bones of the affected extremity -- in many cases it even causes permanent disability. The precise cause of the syndrome is not known. Alongside inflammatory phenomena, changes in the brain also contribute to the disease becoming chronic. "Although the symptoms are mainly limited to one side of the body, some changes in the brain appear to affect both sides -- a finding which could hint at an individual predisposition for the development of CRPS," says Prof. Martin Tegenthoff.
Faulty programming in the brain
As yet, the origins of the disease remain largely unclear. Pain researchers assume that not only inflammatory factors, but also changes in the central nervous system may be a possible cause. For example, in a number of studies researchers found the representation of the affected hand on the brain's "body map" to have shrunk, a phenomenon closely associated with the patients' pain intensity and tactile discrimination abilities.
Excitability changes on both sides
In a previous study, the Bochum group already made an astonishing discovery in the motor system of CRPS patients: the excitability of their motor hand area in the brain is increased -- not only in the half of the brain controlling the affected side, but also in the half correlating to the healthy side. Following these findings hinting at a systemic disorder of the central nervous system, in the current study the group examined whether bilateral disinhibition can also be found in the brain area processing the sense of touch (somatosensory cortex). CRPS patients with unilateral symptoms of the hand were examined. After an electrical stimulation, the researchers measured the brain waves in the somatosensory brain area of the affected and the unaffected hand. Results show: the reduction of inhibition which is found on both sides in CRPS is not limited to motor areas. Those areas of the brain that process sensory perception of the hands exhibit distinct changes too.
"Disinhibition": typical of neuropathic pain
The scientists validated these findings by comparing CRPS patients with healthy volunteers and with patients suffering from pain that -- in contrast to CRPS -- was not caused by a disease of the nerves (so-called non-neuropathic pain). Here too, the researchers found an amazing result: the control patients showed no altered inhibition whatsoever in the hand area, they did not differ from the healthy volunteers. "This shows that the disinhibition of the brain in CRPS patients appears to be specific for neuropathic pain," says Prof. Tegenthoff. [...]
****************************************************************
okay, i didn't say it was earth-shattering work. and really, since i'm cursed with CRPS bilaterally in both arms and legs, well, i just kept sipping wine while you worked at the reading. the excitability of my motor hand area was increased...
moving on then... it is heartening to see that Medscape's Emergency Medicine section on CRPS has been updated, hooray and hallelujah, as a good ED doc could easily be the medico in the best position to spot burgeoning CRPS or someone at risk for it. a big pat on the back to Medscape. for instance, this is the new pathophysiology section (i mean they've got Drexel Dude as their first citation!) and if that isn't progress, well...
No single hypothesis explains all features of reflex sympathetic dystrophy syndrome (RSDS). Schwartzman stated that a common mechanism may be injury to central or peripheral neural tissue.[1] Roberts proposed that sympathetic pain results from tonic activity in myelinated mechanoreceptor afferents. Input causes tonic firing in neurons that are part of a nociceptive pathway. Campbell et al propose a hypothesis that places the primary abnormality in the peripheral nervous system.[2] More recent articles agree that the cause is still unknown.[3] Recent interest has focused on an immune-mediated mechanism.[4]
Most authors now agree that complex regional pain syndrome (CRPS) is a neurologic disorder affecting central and peripheral nervous systems.[5, 6] Mechanisms include peripheral and central sensitization, inflammation, altered sympathetic and catecholaminergic function, altered somatosensory representation in the brain, genetic factors, and psychophysiologic interactions.[6, 7]
Other etiologic possibilities have been suggested. German research has noted the association between elevated levels of soluble tumor necrosis factor receptor 1 (sTNF-R1) and enhanced tumor necrosis factor-alpha activity in patients with polyneuropathy with allodynia.[8] Other German researchers have described autoantibodies in patients with CRPS, especially CRPS type 2.[9]
Harvard researchers Oaklander and Fields have proposed that distal degeneration of small-diameter peripheral axons may be responsible for the pain, vasomotor instability, edema, osteopenia, and skin hypersensitivity of CRPS-1.[10]
The recent association between the use of ACE inhibitors and CRPS has caused some to consider a neuroinflammatory pathogenesis.[11]
Recent research has demonstrated cortical changes, suggesting a possible role in pathophysiology.[12]
All agree that, regardless of the mechanism, the patient experiences intense, burning pain in one or more extremities.
and if *that* didn't perk you up as a significant correction of the basics, check out the epidemiology section! okay, let's! no... i'll leave you in peace. or drunk, depending on how you've gone about reading this post. remember now, an aspirin between your knees tonight will keep you from feeling legitimately raped in the morning. no, wait. that's not it...
Love in the Time of Dobby
Dobby is obsessed with grooming. Rather, Dobby is obsessed with being brushed. We have, at least, five different brush sets -- some meant for humans, which he prefers, and the more expensive, less effective ones designed specifically for cats.
He immediately separates the comb from the brush. The comb means that I am going after the trouble spot at the base of his tail -- dandruff -- and he does not enjoy that. Usually, he knocks it to the floor. Today, he just made off with it.
All the cats are bothered by recording, except Buddy, whose arrival coincided with my first video camera. So I was very surprised that Dobby behaved fairly normally, except that he didn't flop and "give me the belly" with his usual alacrity. His belly produces a prodigious amount of hair that I'd rather brush off at the source than breathe in off a pillow...
He is also extremely paranoid about the other cats seeing him groomed. He heard Buddy in another room at some point and his head barely swiveled away from that point on...
We do this at least three times a day -- this was clearly more play than a dedicated effort to get at his shedding hair. This is Dobby Time.
He immediately separates the comb from the brush. The comb means that I am going after the trouble spot at the base of his tail -- dandruff -- and he does not enjoy that. Usually, he knocks it to the floor. Today, he just made off with it.
All the cats are bothered by recording, except Buddy, whose arrival coincided with my first video camera. So I was very surprised that Dobby behaved fairly normally, except that he didn't flop and "give me the belly" with his usual alacrity. His belly produces a prodigious amount of hair that I'd rather brush off at the source than breathe in off a pillow...
He is also extremely paranoid about the other cats seeing him groomed. He heard Buddy in another room at some point and his head barely swiveled away from that point on...
We do this at least three times a day -- this was clearly more play than a dedicated effort to get at his shedding hair. This is Dobby Time.
Sunday, March 10, 2013
I want to be tucked in, and read to.
My gut is bleeding again, and again I am disgusted by the weakness of my will.
I want to be held.
I want to hang on.
I want to be tucked in, and read to.
I want to be held, briefly. A strong clench, a soft rub, and a letting go, something as close as can be to a shove.
I want to hang on, but I want to let go more, and who wants to be in the middle of a mess like that?
(That's why the holding must end in a push, away.)
I want to be tucked in by someone who knows how to do it, who won't wave the fabrics in the air, won't make a wave of any sort, with anything. Someone who knows the length I will need at the top, to hide my face but not interfere with vision and the seeing of things. Someone who knows to lay the weave down all straight and normal, no creases, until just above the knees because that's where and when we need to consult, try this, try that. Under no circumstances should the quilt or coverlet or sheet land with any added weight. It must be placed, lain, and rarely will my feet or lower leg be covered. You need enormous patience and I am sorry. You may have to identify left and right for me, but do that last.
I am in the mood for Yeats, which is the equivalent of red and flashing lights.
An early Easter Uprising, I want tragedy in brogue and examples of wasted greatness. I also think that I should be Pope. You can call me El Papa. I think we should all stop saying "pope" in favor of "El Papa," even if we are not Spanish speakers. It's jolly sounding. And though I am a girl, I want to be El Papa -- there's no need for a psych consult, it's a passing phase. By the time they get the flue working in that slapped-together stovepipe -- I'll be over it and they can have any old el papa that they please.
This is what to read me after the arduous process of tucking me in under my one quilt, or the more complicated two, if I have a high fever. It doesn't matter how I feel about the poem, the poet, the event, or whether "the high tomorrow will be whenever I get up" {waving::at::george} -- All that matters is right now, and this is what I want, "Easter, 1916."
I HAVE met them at close of day
Coming with vivid faces
From counter or desk among grey
Eighteenth-century houses.
I have passed with a nod of the head
Or polite meaningless words,
Or have lingered awhile and said
Polite meaningless words,
And thought before I had done
Of a mocking tale or a gibe
To please a companion
Around the fire at the club,
Being certain that they and I
But lived where motley is worn:
All changed, changed utterly:
A terrible beauty is born.
That woman's days were spent
In ignorant good-will,
Her nights in argument
Until her voice grew shrill.
What voice more sweet than hers
When, young and beautiful,
She rode to harriers?
This man had kept a school
And rode our winged horse;
This other his helper and friend
Was coming into his force;
He might have won fame in the end,
So sensitive his nature seemed,
So daring and sweet his thought.
This other man I had dreamed
A drunken, vainglorious lout.
He had done most bitter wrong
To some who are near my heart,
Yet I number him in the song;
He, too, has resigned his part
In the casual comedy;
He, too, has been changed in his turn,
Transformed utterly:
A terrible beauty is born.
Hearts with one purpose alone
Through summer and winter seem
Enchanted to a stone
To trouble the living stream.
The horse that comes from the road.
The rider, the birds that range
From cloud to tumbling cloud,
Minute by minute they change;
A shadow of cloud on the stream
Changes minute by minute;
A horse-hoof slides on the brim,
And a horse plashes within it;
The long-legged moor-hens dive,
And hens to moor-cocks call;
Minute by minute they live:
The stone's in the midst of all.
Too long a sacrifice
Can make a stone of the heart.
O when may it suffice?
That is Heaven's part, our part
To murmur name upon name,
As a mother names her child
When sleep at last has come
On limbs that had run wild.
What is it but nightfall?
No, no, not night but death;
Was it needless death after all?
For England may keep faith
For all that is done and said.
We know their dream; enough
To know they dreamed and are dead;
And what if excess of love
Bewildered them till they died?
I write it out in a verse -
MacDonagh and MacBride
And Connolly and Pearse
Now and in time to be,
Wherever green is worn,
Are changed, changed utterly:
A terrible beauty is born.
I want to be held.
I want to hang on.
I want to be tucked in, and read to.
I want to be held, briefly. A strong clench, a soft rub, and a letting go, something as close as can be to a shove.
I want to hang on, but I want to let go more, and who wants to be in the middle of a mess like that?
(That's why the holding must end in a push, away.)
I want to be tucked in by someone who knows how to do it, who won't wave the fabrics in the air, won't make a wave of any sort, with anything. Someone who knows the length I will need at the top, to hide my face but not interfere with vision and the seeing of things. Someone who knows to lay the weave down all straight and normal, no creases, until just above the knees because that's where and when we need to consult, try this, try that. Under no circumstances should the quilt or coverlet or sheet land with any added weight. It must be placed, lain, and rarely will my feet or lower leg be covered. You need enormous patience and I am sorry. You may have to identify left and right for me, but do that last.
I am in the mood for Yeats, which is the equivalent of red and flashing lights.
An early Easter Uprising, I want tragedy in brogue and examples of wasted greatness. I also think that I should be Pope. You can call me El Papa. I think we should all stop saying "pope" in favor of "El Papa," even if we are not Spanish speakers. It's jolly sounding. And though I am a girl, I want to be El Papa -- there's no need for a psych consult, it's a passing phase. By the time they get the flue working in that slapped-together stovepipe -- I'll be over it and they can have any old el papa that they please.
This is what to read me after the arduous process of tucking me in under my one quilt, or the more complicated two, if I have a high fever. It doesn't matter how I feel about the poem, the poet, the event, or whether "the high tomorrow will be whenever I get up" {waving::at::george} -- All that matters is right now, and this is what I want, "Easter, 1916."
I HAVE met them at close of day
Coming with vivid faces
From counter or desk among grey
Eighteenth-century houses.
I have passed with a nod of the head
Or polite meaningless words,
Or have lingered awhile and said
Polite meaningless words,
And thought before I had done
Of a mocking tale or a gibe
To please a companion
Around the fire at the club,
Being certain that they and I
But lived where motley is worn:
All changed, changed utterly:
A terrible beauty is born.
That woman's days were spent
In ignorant good-will,
Her nights in argument
Until her voice grew shrill.
What voice more sweet than hers
When, young and beautiful,
She rode to harriers?
This man had kept a school
And rode our winged horse;
This other his helper and friend
Was coming into his force;
He might have won fame in the end,
So sensitive his nature seemed,
So daring and sweet his thought.
This other man I had dreamed
A drunken, vainglorious lout.
He had done most bitter wrong
To some who are near my heart,
Yet I number him in the song;
He, too, has resigned his part
In the casual comedy;
He, too, has been changed in his turn,
Transformed utterly:
A terrible beauty is born.
Hearts with one purpose alone
Through summer and winter seem
Enchanted to a stone
To trouble the living stream.
The horse that comes from the road.
The rider, the birds that range
From cloud to tumbling cloud,
Minute by minute they change;
A shadow of cloud on the stream
Changes minute by minute;
A horse-hoof slides on the brim,
And a horse plashes within it;
The long-legged moor-hens dive,
And hens to moor-cocks call;
Minute by minute they live:
The stone's in the midst of all.
Too long a sacrifice
Can make a stone of the heart.
O when may it suffice?
That is Heaven's part, our part
To murmur name upon name,
As a mother names her child
When sleep at last has come
On limbs that had run wild.
What is it but nightfall?
No, no, not night but death;
Was it needless death after all?
For England may keep faith
For all that is done and said.
We know their dream; enough
To know they dreamed and are dead;
And what if excess of love
Bewildered them till they died?
I write it out in a verse -
MacDonagh and MacBride
And Connolly and Pearse
Now and in time to be,
Wherever green is worn,
Are changed, changed utterly:
A terrible beauty is born.
-- William Butler Yeats (1865-1939)When all of that is said and done, it will be time for a lullaby, and, right now, this is what it's gonna be -- something easy from Neil Young's album, "After the Gold Rush." Unless you can get my monks to phone in Compline? Could Brother William slip away, d'ya think, if he's not in trouble? Can I have Fig Newtons for Christ's body, again?
Hey, hey
Cripple Creek ferry
Butting through
The overhanging trees
Make way
For the Cripple Creek ferry
The waters going down
It's a mighty tight squeeze.
All alone the captain stands
Hasn't heard
From his deck hands.
The gambler tips his hat
And walks towards the door.
It's the second half
Of the cruise.
And you know he hates to lose.
Hey, hey Cripple Creek ferry
Butting through
The overhanging trees
Make way
For the Cripple Creek ferry
The waters going down
It's a mighty tight squeeze.
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