Ethan, in memoriam

I tried to find a song for Ethan, who did love music, but it wasn’t working. I’m not much of a poet, frankly, but it was the only thing I could do.

Here is Ethan’s poem from me.


We did the impossible quietly
Getting the boat into harbor
and keeping it safe through the night

Tight hugs abeam unstable piers
My little brother, so big

When I thought I'd die of weakness
You showed me my strength
And, smiling, would not accept less

Tight hugs killing off mortal fears
My little brother, so big

Long nights talking and talking
'til your gyroscope turned and you looked
at the first stains of dawn on the water

Tight hugs at the end of the tears
My little brother, so big

When you turned searching eyes upon me
For the integrity that rooted your heart
You had the grace to thank me

Tight hugs through difficult years
My little brother, so big

You were so impossibly larger than life
I wrote you into a comedy of death
And you were the best thing in it.

I miss your hugs, my dear.

It’s really too bad (a bit of staggering English understatement, there.) He had found the right life and the right wife, and I was beginning to think I’d eventually meet his children.

I hope he’s free of the demons that hounded him so mercilessly. Wherever he is, I expect he’s raising Hell — kicking righteous butt and making the world fall in love with him, and doing both with equal, unquenchable vigor.

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Autogenic training — calming the CNS in the nicest possible way

I have to fling this file up onto my site and write the supporting material later. I’m trying to do a lot on very little steam, so forgive my slapdash approach. There will be a readme to go with this next time. Believe it or not, there’s a reason for every single line ūüôā

Anyway, this is the (probably) final draft of the first autogenic training script I’m writing for my charity, CRPS: Art & Spirit. It will be read in and turned into an mp3 in the fullness of time, which will also be available under the same Creative Commons license, so please do share.

Meantime, if I say it myself, just reading this is soothing to that frazzled ol’ autonomic system ūüôā

Now, let’s see if I can load the whole pdf here… direct link to brain-soothing script

Indirect link to script:
autogenictraining-no1-ver1.2 — Click the link, then click the link again.

NOTE
I’m sorry to say there were some ghastly cut and paste errors in the version originally posted. I posted the corrected version on December 2nd, 2014. This one will flow a lot more smoothly.

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Un Crossed

Note – For legal reasons, this article is explicitly labeled an opinion piece. Quotes are used with prior permission of the author.

I’ve written of bereavement, suicide, the fact that CRPS is not imaginary (the whole point of this blog), and the true mortality rate of CRPS.

Now it has all come together.

Cross Y. was a friend of mine. He wore his heart on his sleeve — there was no deception about him, no malingering, no lying, no selfishness. Selfishness was something he needed more of, and tried to aspire to, because he forgot his own needs in the face of others’. His kind and loving heart poured forth upon his CRPS kindred and those he loved, often in scintillatingly original and muscular words.

He was injured at work. You’ve seen the news about corruption in New Jersey. Add to that the corruption of the Worker’s Comp system, and try to imagine for one minute what that might be like.

July 8, 2013
The truth will set me free,
Kill your dreams,
have nightmares for the rest of your days,
Welcome to New Jersey,
we stand our ground,
unite and become one sound,

The truth will set me free,
technology,
paper trial was the beginning,
soon the end,
your dark tunnel will remain,
Yes this once holy man,
once believed,
now a fucked up memory,
many joined,
happily crucified,
only one will remain,
your future is in vain,
your lies you cannot hide,
you may run,
change your name,
DNA will remain.

The truth will set me free,
Kill your dreams,
have nightmares for the rest of your days,
Welcome to New Jersey,
we stand our ground,
unite and become one sound.

Cross Y 7/6/13 1.21pm

He was a good-looking young Middle Eastern man, so of course, the New Jersey cops figured he was dirty from the get-go.
Cross solo
Then his brother, who didn’t believe he had this disease, became a cop, and things got worse still.

I watched his family dynamics transform as his marriage with a green-card seeker fell apart, then his beloved family started to fail him, and then he spent the best part of a year fighting to survive in an increasingly hostile and impossible hail of abuse, predation, invasion, and brutality.

The system failed him. His lawyer failed him. His family failed him. The original newspaper articles, based on interviews with his family, trivialize and brutalize still further the brightest mystic-poet I’ve ever known.

I’m grieved. More than that, I’m furious.

I had to watch as his extraordinary resilience was pushed and pushed and pushed until every strand of rubber broke.

I had to watch as his stumbling command of English prose was used to throw away the meaning behind his words. Judges and doctors alike could hardly be bothered to listen, and certainly couldn’t be bothered to believe him. Those of us who knew him had to watch as his posts wove between intelligent determination and raging despair, as time after time after time he was thrown back from what properly belonged to him.

His wife stole $30,000 of disability checks. His wife dumped him as soon as her immigration status was assured. His wife pushed him down off his weak leg.

Guess who went to jail? It wasn’t his wife. Try to imagine cold, sharp steel cuffs snapping tightly on CRPS wrists. You can’t. The world isn’t supposed to be large enough to hold that much pain.

August 6, 2013
The color of my eyes have become

the mountain I cannot climb,
the west brings the rainy days,
the east brings the heat,
So I wait,
I’ll give you my night,
I’ll give you my site,
I’ll give you my last breath,

The color of my eyes have become

the mountain I cannot climb,
Realities exist,
Unwinding occurs,
Petals unfolding,
Protecting what’s remaining,
Adapting each day,
Earth is distributing,
New sign,
New rhythm for humanity,
Being Bold,
Voice your feelings,

Full moon of greatness,
Hidden lights reflecting,
Fire resurrecting,
Slumbering beliefs,
Illusions of the underground,
Transformation of natural field,

The color of my eyes have become

the mountain I cannot climb.

9.42am 8/6/13 Lost soul

His brother’s police pals broke into his room (or were let in by his parents), stole his thumb drive, plowed through his poetry and his belongings, took his personal belongings, hacked his hard drive and his accounts. When he said he was going to install a spycam for evidence, his parents got him involuntarily committed to a public psychiatric hospital in New Jersey. They did not treat his CRPS, which was, after all, all in his head. They treated delusions that didn’t exist and a paranoia that was a perfectly rational response to his ghastly situation.

He got in line for emergency housing, but the wait list was at least 6 months long — for emergency housing. A combination of Governor Christie and Hurricane Sandy saw to that. The emergency housing and homeless shelters in New Jersey have been utterly gutted.

Three weeks ago, his father attacked and strangled him at a barbecue, in front of others. He posted a picture of himself afterward, with a bleeding bruise under one eye and big red welts around his neck, with the distinctive engorged look around the eye-bones (remember this is a former Emergency nurse writing this.)

His mother stood by and watched.

Someone called the police.

The partygoers disappeared.

His mother told the police that her husband had not attacked Cross, but that Cross had attacked her — with a knife.

Guess who got the handcuffs…

In private, she later apologized, and said she’d write a statement retracting the police report and her statements behind the psychiatric report.

She reneged.

He was living with people who were actively trying to destroy him. His work was being invaded and stolen. His life was in danger. Not even his dog’s life was safe.
Cross and his dog Leo
He had a sign posted in the rear window of his car: “We burn until there is a cure for RSD/CRPS.”

With perfect logic, he burned his car, before jumping to his death in the most beautiful part of the state. Of such indelibly poetic actions are myths made.

For him, there was no cure.

July 7, 2013
They Murdered me, I never

committed Suicide….

This disease is not imaginary. He was not crazy. He was perilously sane. He was a warm and loving soul with a shining gift of a mind, trapped in a fatally tightening spiral.

All he is now is a tragically truncated memory. What’s left is what we can scrape together of his work from our online conversations.

They keep saying he died of suicide. That’s not true. He died of torture: CRPS, institutional murder, and child abuse.

I. Am. Furious.

Cross, however, is finally at peace.

Reaching the Universe

Silence the past,
Silence the worries,
Silence the outside,
Silence the future,
Silence the self,
Silence the noise,
Silence the people,
Silence the voices,
Everything has left,
Faith in the now moment,
Faith that I am present to myself,
You are stripped,
You are Free,
You are Pure.
You are reaching the universe.

– Cross Y

Rest in peace, my darling, shining brother.

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Poem: From the silence

Chaos of terror and battering storms of emotion
Bashing the hull and ripping at the rigging —
Can’t tell: is water pouring over outside
Or pouring in inside?
So much it’s hard to say.
Will something come loose?
What sail could hold against this?
What rudder keep on?
Doesn’t matter…. It doesn’t matter. These are the ones I have.

The soul breathes regardless.
I remember that the answers come in the silence.
Step outside the storm, though it goes on without me
Feeling it, but outside, on the hull, not inside, not in me.
This vessel holds.

So I pause, heart whole or heart breaking,
and hold the silence
until I need to speak; and
if I speak from the silence,
then can answers come.

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The arts are not trivial — why mythopoiesis matters

Almost 7 years ago, I was walking with a fellow writer, sharing our souls as good friends do. I was recently disabled with CRPS and, needing activity as I do, I was trying to think what to do with my life beyond struggling to stay alive and in manageable pain.  I complained about my internal blocks to any sort of publicity for my work.  (I had no blogs.  Nobody outside the Java software industry had ever heard of me.  Nearly all my output had been printed anonymously by the company I worked for.)  
She asked what I thought that was about.  I said I had been brought up with the very clear message that arts are fine for a hobby, but that making a living as a writer or actor was absolutely unthinkable.  It was irrational to take the arts seriously.
Her soft voice changed to ringing iron in the shape of a bell: “The arts are not trivial.” ¬†
I stopped, right there on the sidewalk, shocked out of my self-pity. She turned and egged me on; we continued walking. ¬†“What did you do after surgery?” she asked.
I mumbled, “Watched movies.”
“You watched movies. When you were a little better but couldn’t go back to work yet, what else did you do?”
“Read.”
“You read. ¬†Writers and actors and producers and other artists got you through that time. ¬†They got you through the last year, with the awful work and the layoff. ¬†Survival is not trivial. ¬†It’s significant. ¬†The arts matter.”
Hard to argue with that. ¬†I’d be dead, miserably dead, without the work of visionaries — especially the really ¬†funny ones.
This came up again in the context of my own more recent absorption in the value of mythology as a ticket to survival in the face of horrible odds — a pressingly modern issue in these impossible times. ¬†Then today, I learned that¬†it was Professor Tolkien who created the word “Mythopoeia” — wrote a poem on it, in fact, to his increasingly rigid friend Reverend Lewis.¬†
While both men were theists, C. S. Lewis was much more interested in the structure and received wisdom of religion; J. R. R. Tolkien was a spiritual seeker more in the experiential, visionary, nature-loving, nearly shamanic mode of poets like Coleridge and Keats.  
 Here it is, with my annotations [in square brackets and italicized.]  Take your time and enjoy:

To one who said that myths were lies and therefore worthless, even though ‘breathed through silver’.

Philomythus to Misomythus

[“Loves Myths” to “Opposes Myths”]

You look at trees and label them just so,
(for trees are ‘trees’, and growing is ‘to grow’);

[I love this comment on the dry limits of literalism!]

you walk the earth and tread with solemn pace
one of the many minor globes of Space:
a star’s a star, some matter in a ball
compelled to courses mathematical
amid the regimented, cold, inane,
where destined atoms are each moment slain.

At bidding of a Will, to which we bend
(and must), but only dimly apprehend,
great processes march on, as Time unrolls
from dark beginnings to uncertain goals;

[he’s making the point that there’s more to all this than we can comprehend in our poorly-constructed, limited and ignorant theories of time, space, matter, and life.
He goes on to describe fiction, which at least doesn’t pretend to hold all facts:]

and as on page o’er-written without clue,
with script and limning packed of various hue,
an endless multitude of forms appear,
some grim, some frail, some beautiful, some queer,

[he used “queer” in the sense of “odd”, but as far as I’m concerned it’s all good]

each alien, except as kin from one
remote Origo, gnat, man, stone, and sun.
God made the petreous rocks, the arboreal trees,
tellurian earth, and stellar stars, and these
homuncular men, who walk upon the ground
with nerves that tingle touched by light and sound.

[by pairing these luscious words with the plain ones, he just destroyed the dry concept that “trees are ‘trees’, and growing is ‘to grow'” — making the point that there’s more to language and life than the rules we know.]

The movements of the sea, the wind in boughs,
green grass, the large slow oddity of cows,
thunder and lightning, birds that wheel and cry,
slime crawling up from mud to live and die,
these each are duly registered and print
the brain’s contortions with a separate dint.

[he’s pointing out (with beautiful imagery) that our brains are so rich and complex, and that life and experience are so rich and complex, that each rich experience makes unique patterns in a complex brain…]

Yet trees are not ‘trees’, until so named and seen
and never were so named, till those had been
who speech’s involuted breath unfurled,

[…and that even to come up with dry little words to describe them, is a feat of imagination in the first place]

faint echo and dim picture of the world,
but neither record nor a photograph,
being divination, judgement, and a laugh
response of those that felt astir within
by deep monition movements that were kin
to life and death of trees, of beasts, of stars:
free captives undermining shadowy bars,
digging the foreknown from experience
and panning the vein of spirit out of sense.

[remove the line-breaks and read that again: “but neither record nor a photograph,¬†being divination, judgement, and a laugh¬†response of those that felt astir within¬†by deep monition movements that were kin¬†to life and death of trees, of beasts, of stars:¬†free captives undermining shadowy bars,¬†digging the foreknown from experience¬†and panning the vein of spirit out of sense.”¬†
In short, taking pictures and otherwise recording things is often a nervous tick, used by those who aren’t enough in touch with their feelings and experiences to find some richer way to convey them meaningfully — but convey them we do, however we can, in an effort to rescue our deeper selves…]

Great powers they slowly brought out of themselves
and looking backward they beheld the elves
that wrought on cunning forges in the mind,
and light and dark on secret looms entwined.

[…and from that effort we grow, and brilliant works come in time.]

He sees no stars who does not see them first
of living silver made that sudden burst
to flame like flowers beneath an ancient song,
whose very echo after-music long
has since pursued. There is no firmament,
only a void, unless a jewelled tent
myth-woven and elf-pattemed; and no earth,
unless the mother’s womb whence all have birth.

[in short, to see something, we must first be able to imagine it.  This idea of his has since been borne out by modern science: http://www.sciencedaily.com/releases/2008/07/080703145849.htm]

The heart of Man is not compound of lies,
but draws some wisdom from the only Wise,
and still recalls him.

[Tolkien’s religious background was Roman Catholic, which believes in God as the ultimate source of wisdom …]

               Though now long estranged,
Man is not wholly lost nor wholly changed.

[…and teaches the story of the Garden of Eden as the fall of man and expulsion from paradise.]

Dis-graced he may be, yet is not dethroned,
and keeps the rags of lordship once he owned,
his world-dominion by creative act:
not his to worship the great Artefact,
Man, Sub-creator, the refracted light
through whom is splintered from a single White
to many hues, and endlessly combined
in living shapes that move from mind to mind.

[Our minds may be separated from God’s (his belief, not mine) but they are still derived from it, and all our rich variety of unique perceptions create endless possibilities.]

Though all the crannies of the world we filled
with Elves and Goblins, though we dared to build
Gods and their houses out of dark and light,
and sowed the seed of dragons, ’twas our right
(used or misused). The right has not decayed.
We make still by the law in which we’re made.

[A triumphant assertion of the right to exercise creative will.  Go Tolkien!]

Yes! ‘wish-fulfilment dreams’ we spin to cheat
our timid hearts and ugly Fact defeat!
Whence came the wish, and whence the power to dream,
or some things fair and others ugly deem?

[yeah, so we make stuff up — and it makes us stronger. It’s holy.]

All wishes are not idle, nor in vain
fulfilment we devise — for pain is pain,
not for itself to be desired, but ill;
or else to strive or to subdue the will
alike were graceless; and of Evil this
alone is deadly certain: Evil is.

[now that’s pretty clear!]

Blessed are the timid hearts that evil hate
that quail in its shadow, and yet shut the gate;
that seek no parley, and in guarded room,
though small and bate, upon a clumsy loom
weave tissues gilded by the far-off day
hoped and believed in under Shadow’s sway.

[you don’t have to be a soldier to strive against evil. To make stories, or art of any kind, as a refuge and defense against evil, is to make room for a better future…]

Blessed are the men of Noah’s race that build
their little arks, though frail and poorly filled,
and steer through winds contrary towards a wraith,
a rumour of a harbour guessed by faith.

[… and the future itself starts out as something imaginary, a “rumor.. guessed by faith.”]

Blessed are the legend-makers with their rhyme
of things not found within recorded time.
It is not they that have forgot the Night,
or bid us flee to organized delight,
in lotus-isles of economic bliss
forswearing souls to gain a Circe-kiss
(and counterfeit at that, machine-produced,
bogus seduction of the twice-seduced).

[it’s been said that this sounds a bit like our own times]

Such isles they saw afar, and ones more fair,
and those that hear them yet may yet beware.
They have seen Death and ultimate defeat,
and yet they would not in despair retreat,
but oft to victory have tuned the lyre
and kindled hearts with legendary fire,
illuminating Now and dark Hath-been
with light of suns as yet by no man seen.

[artists and writers and musicians keep us going, reminding us of brighter times and a future worth having, even in the face of defeat]

I would that I might with the minstrels sing
and stir the unseen with a throbbing string.

[“I would” means “I wish” — it’s an older form, so an antiquarian like the Prof can use it with a straight face]

I would be with the mariners of the deep
that cut their slender planks on mountains steep
and voyage upon a vague and wandering quest,
for some have passed beyond the fabled West.
I would with the beleaguered fools be told,
that keep an inner fastness where their gold,
impure and scanty, yet they loyally bring
to mint in image blurred of distant king,
or in fantastic banners weave the sheen
heraldic emblems of a lord unseen.

[he doesn’t care how silly or crazy or poor he seems, he will keep his courage and share his vision whatever anyone says. ¬†Man after my own heart]

I will not walk with your progressive apes,
erect and sapient.

[in his day, “progressive” meant “making more machines, funding more science without conscience,” “making bad things happen faster”; what was called “progress” in his day, we would call “unsustainable development,” “pollution,” “health crises,” “rising poverty,” “environmental destruction,” and all those associated events. This word’s meaning has swivelled about 180 degrees]

                Before them gapes
the dark abyss to which their progress tends
if by God’s mercy progress ever ends,
and does not ceaselessly revolve the same
unfruitful course with changing of a name.
I will not tread your dusty path and flat,
denoting this and that by this and that,
your world immutable wherein no part
the little maker has with maker’s art.
I bow not yet before the Iron Crown,
nor cast my own small golden sceptre down.

[another line that makes me rise and wave my fist in triumph.¬†He will keep his little sovereignty over his own poor life and trivial work, rather than give himself up to the unfeeling machine of so-called “success” that’s based on anaesthetic values like logic without art, money without value, creation without creativity.]

In Paradise perchance the eye may stray
from gazing upon everlasting Day
to see the day illumined, and renew
from mirrored truth the likeness of the True.
Then looking on the Blessed Land ’twill see
that all is as it is, and yet made free:
Salvation changes not, nor yet destroys,
garden nor gardener, children nor their toys.

[when we are true to our best selves, we are heavenly and whole.  Simple as that]

Evil it will not see, for evil lies not in God’s picture but in crooked eyes,
not in the source but in malicious choice,
and not in sound but in the tuneless voice.

[evil is due to distorted perspective, vile actions and unfeeling motives — it’s not available to those who are sincere]

In Paradise they look no more awry;
and though they make anew, they make no lie.

[creativity is not a lie]

Be sure they still will make, not being dead,
and poets shall have flames upon their head,
and harps whereon their faultless fingers fall:
there each shall choose for ever from the All.

[when we’re dead, those of us with the nerve and integrity to create will be valued, have endless possibilities to choose from — and work directly with God!]

Sources:

It occurs to me I should check the copyright status of this poem. Obviously, I think of Professor Tolkien’s work as being for all people and for all time, but his executors’ views may differ from my implementation. ¬†

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I intend

I intend to die a hale and hearty old bitch,
rounding Cape Hatteras on a blowy day
in a boat far too light for the waters
but light enough for me;
or flying over fences on my blooded
or bloody-minded Arab mare,
a feisty brat after my own heart,
one fence too far.

Sudden and fierce it should be.
Nobody I’ve never met should profit
from my slow and tortured death,
acceding in misery
to what the doctor thinks is best.

Their training is not that good.

Pharma doesn’t train my best healers.
Only wind and waves and good rich earth
can give what I need, or take it at the end.

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Playing with fire

No idea what prompted this poem, but it might have been an iPhone app that makes your phone look and act like a Zippo. Enjoy… and feel free to speculate about what was in my other hand.

up side
down
looks fine
from here

It’s all a
matter of
perspective.
Isy says so.

it all looks odd
up side down

spine free
limbs agleam

it all looks good
up side down

Isy? Isn’ty?
no matter

Flip Me

Isabel plays
coolly with fire

up side down

is a different
point of view

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Pain Manifesto

This came out of cold chronic CRPS type 1, a debilitating condition of intractable chronic pain, nervous system disruption, and multi-system dysregulation — destroying the body’s ability to manage heat/cold, blood sugar, immune defense, circulation, sensation, bone density, movement, vision, digestion, heart function, and ultimately survival.

“Standard” treatments don’t work well for me; moreover, they involve invasive procedures too brutal to tolerate and medications I’m either outright allergic to, or that impair me so profoundly I can no longer function. At all.

So I took myself off my meds, thought things over, and came to the following conclusions.

MY CHRONIC PAIN MANIFESTO

Yes, it hurts.
It’s going to anyway.

So should I hoard my days
And fast from life?
Comfort myself with poisons,
Blister-packed and FDA approved?

Some think it would be best all ’round.
I’d cure them if I could (heh!)
But I’m too tired for
Yet another pointless struggle.

The sunlight pours through trees like prosecco
And reminds me what it means to live:

Voices warm with love, the
Mouth-smack of good food,
The hug of hills and the
Rough snuggles of the sea.

Hoard my days? I’ll spend each one
Like it’s stuffed with jewels
Pouring through my hands like a miser’s dream.

Feast on this:
The cost of life is much the same.
The difference lies in how you spend it.

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Words, words, and words, with a poetry chaser

I have logical and philosophical objections to certain words used to describe me or what I do. I don’t expect anyone to change the way they speak, but feel free to entertain yourself by mulling two ideas and reading one egregious rhyme (think Lewis Carroll meets either Timothy Leary or Tom Lehrer, I’m not sure which.)

Word 1: Disabled

Hah! I am extremely able, thank yeeew. With both hands behind my back and my head held under water, I am still able. I’m able to add 2 and 2, for instance, or quote that wonderful bit from Twelfth Night that starts, “I’d build me a willow cabin at your gate, and wait upon my soul within the house …” Mind you, if you’re holding me underwater, it would be hard to check that, but I can still do it, I assure you.

I am handicapped. Like a runty little horse that has to have 30 pounds of lead stuffed into its saddle before it gets into the race. Like a golfer who’s being scored by a drunk with a broken calculator. I have exactly the same tasks to accomplish as anyone else in the race or on the course, but I have some added burdens that make it rather harder to succeed.

Word 2: Recovery

Why should I want to re-cover? Of all the covers that have been ripped off, I can’t say I think all that many need to go back on. I love all this fresh air. I love the lack of artifice. I love the inward freedom of having so much stuffing removed.

I don’t need recovering. Appropriate padding, yes; portable cushions, yes please, by all means. But upholstery is just one big refuge for dust mites and dander, metaphorical and otherwise.

I aim to heal. Healing from any profound physical or mental insult (and CRPS is certainly both!) does not mean going back to what or who or how I was before, it means finding a new way forward. There is no way back, and if there were, I have no reason (given how things played out) to think that returning there would be good for my health!

No, it’s forward for me: man the lifeboats, or woman them of course, but I’ll head for new horizons rather than try to wade back through the hideous swamp I sometimes think I’m climbing out of.

The Rhyme: “Re-cover and Heel — an overstretched metaphor”

Before you read further, let it be clearly understood that I love dogs, I have always loved dogs, and I’m old enough to use the word “bitch” in its traditional sense of female dog. In this case, an upholstered one…

The brocade bitch took a turn for the worse
and bit off the toe of a shoe.
The shoe kicked back with a bitter laugh
And said, “That the worst you can do?”

Upholstery torn, the bitch barked out,
“You’re badly in need of a nurse!”
The shoe stomped off and hollered back,
You’ll soon be in need of a hearse!”

So the bitch went home to patch things up
While the shoe sought places new.
She’s jacquard now, otherwise fine;
He’s Prada, Gucci, and Diesel too.

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