A Wonderful Video of Ashley's Life, and a Final Message From Her

Hi... to no readers!

I've had to turn off access to the blog due to spamming.  While I get that pornographic irritation taken care of (hmm, there has GOT to be a better way to say that!), I get to write midst the sense of being in a silent Marlinspike Hall, where every footstep begins the ring of a circling echo.  It's empty here...

Ashley Riemer was such a vibrant person, so on the cusp of her transition to independent adulthood... remember how hard and how wonderful that time was in our lives?  She deserves so much credit for -- how to say this?  For becoming a beautiful adult all while being exactly where and what she is, damn, where and what she *was*.

My temporal confusion, at least in this matter, comes from this video (and another series of her memorial service -- she donated her body to the Georgetown Med School for research, bless her!).

The videographers  added a short recordingAshley made to be her "final words," and they are moving words that left me feeling Ashley as very much "here and now."

[Points to anyone who knows what song is playing in my head!  Something about a breeze... a donegal breeze.  (Teachers always give big ass hints.)  Of course, these lyrics are the ones that come to my mind, a mind very different from Ashley's, from her parents.  Always, always being and feeling à rebours, I am.]




Ashley Riemer's Video of her life uploaded to YouTube by Tammy Dennison (at whose channel you can also see the three videos of Ashley's Memorial Service)

With your dark hair in the donegal breeze,

Bringing me softly and sweetly to the ground,

But, there's madness in the sycamore trees,

And there's no salvation to be found.

Right now the only thing that my mind ever holds,

Are long dark silences or screaming that explodes,

Burning rocking beds with visions of a land,

Long dark tunnels, questions and calm,

But, with you, you know I have no doubts,

And fear will have no sting,

With your brilliant eyes and your lost and broken wing,

My head upon your shoulder as you take me in your arms,

Continents will crumble, we will find no harm.

With your dark hair in the donegal breeze,

Bringing me softly and sweetly to the ground,

But, there's madness in the sycamore trees,

And there's no salvation to be found.

Well I'll brace myself against the dark, endeavour to go on,

No matter how long it takes, and even though I might be wrong,

And I will ask a little favour of whatever God I find,

And I will come back for you darling, when I find some peace of mind.

Well I don't know about tomorrow, it will be here and gone,

I don't know about tonight, it'll be too long,

Sometimes I think I'm dying, and I don't care how,

All I know is that I want you, and I want you here and now.

With your dark hair in the donegal breeze,

Bringing me softly and sweetly to the ground,

But, there's madness in the sycamore trees,

And there's no salvation to be found.

For Ashley

   Sorrow departs sweetly in the worst scenes of good opera:

   Huge breasts bound tightly by slag-made cross-your-heart design

   or deceptive concrete cups, ruching, and Empire's feign of draping flag,

   chubby hands clamped to a pale quarter-inch of forehead's foundational

   stage slather;  Spandex back-supported baritone bellies twirl twirl twirl 

   and fall, arms approximating Golgotha, pointy goatee

   in pretty pointy goatee profile.

An aria ensues, eyes glint -- dab dab dab --

and postures suddenly improve.  Posture improves. 

Our theater now plays the halls of Maryland's Walter Reed

where Ashley is one of God's ones:

Top billing, Playbill's pop-eye yellow cover,

where Ashley is exceptionally exceptional.  

When blood pools and she rots,

it's angel wings that sassy girl achieves, not damp, weepy, 

slinky clots of stringy-tissued necrosis;

She's all apotheosis 

and no part pure stink.  

But her breasts are huge and healthy:  It's a family trait.

As her limbs absorb themselves, melting wax preserving

every touch like amber, every thumb print,

the incongruous grows and parts the sorrow

of this busty wasting woman child.

She was meant to die on cue, or perhaps not,

it depends,

as so much does, so much does.  

It depends

on whether Ashley's dying proves operatic

or is cast upon the more prosaic 

planks of unsung trodden drama.  

It depends

on the prompter

for each, as one will throw a lyric voice 

for her sweet ears alone,

and one will hiss and mouth

some line of gasps and sighs,

gutteral utterances.

She each will mock, anyway, with metered overplay --

spout some nasty limerick, jump up and spew

a bloody softshoe,

though in consideration

of her brother and sister actors, her pale arms

and long fingers will cast sand about the stage,

not just so we may hear with acuity

the slide and slides of her mottled soft-soled shoes,

but to soak up the dark dripping red, for when not

congealed, it's a potential hazard, and when

it does clot, the sensation is much

like stepping on a slug.

The prognosis, say the necromancers, will defy

and defile Ashley's breasts while they still swell

and enthrall, still catch a man's eyes, still cause

her male doctors to be glad of long, white coats,

and her female doctors to curse the curse of blushing.  

On cue, all admire the pearl crucifix tucked, twisted,

buried deep in teenage cleavage, between wires,

monitor pads and an embedded port,

wherein all the chemo goes 

and slows, kills and kills,

as indiscriminate as her Lord.

She's old enough, now, to be moved to the adult ward,

(every casted Annie grows up, too, the curls and voice

become insipid, the hair too brazen bronze)

but Ashley was raised, really, on pediatrics,

a child actress, a lisping prima donna,

one of the rare altos to earn deference

as a leukemic red-haired baby, though she has grown

into a pure soprano, the pure soprano

     of a whisper that flies

          whole,

               

that waivers and trembles tremolo

     vocal glory, 

          as heads bend closer, longing to hear,

     

enthralled by a death scene,

the real abstracted, a gilt poem, the spot lit

gift of many a booming brava!

-- and the self-indulgent, tendon-stretching 

screech for more and more, encore! 

-- an athletic, death-defying feat

of lung, tongue, and larynx,

of lip, heart, and soul.

Other heads rear backward, rear away, 

having heard this song before,

differently, having seen the struggle

to perform, smiling and dying, day

after day, way upon way, drip

by drip,

this woman child's performance

sometimes slipping, sometimes allowing

for fears, tears, and memory --

her worst nights closing in febrile hope

of tomorrow.  

Other heads have heard

the song of her ragged breath as she slept

in sweat, while her good parents fiercely prayed.

Other heads smiled at henna tattoos: 

olive blues and orangy seafoam, a grinning

skull, tiny flies, a cross and paisley socks,

elegant peacock elbow-long gloving.

Swift grins at real piercings, despite the risk,

gotten rapidly, suddenly, as impulsively fast

as the sexy photographs and flashes of flesh,

the cover shots for Ashley's billing as

"the beautiful, believing girl who dies too young."

The usual opera written strangely for one,

a theatrical venue in the semi-round,

where Ashley is one of God's

ones, singing her way out --

belting her way out --

in raspy heartbeats,

dreaming of singing

in New York, more Broadway

than Met. Really, if only she could live to know

it, really, Ashley wants an amphitheater,

loving, smiling, nodding heads

looking down, eyes calling soft,

encouraging, eyes calling soft,

pledging troth.

Call it an avatar or be averse

and call it just some photograph,

Ashley's image designed and plotted,

deviously planned to make me love her. 

I saw her picture first

and instantly vowed,

immediately pledged my troth.

"O, teach me how 

I should forget to think!"

Troth being an archaic term,

my vow does not bind but my bow

does bend, and deeply, as I aim brutally

sharp arrows from this ancient site, tall columned

where I perch, and shoot straight

down at Ashley's heart,

pale blue veins between 

breasts fallen apart

as she writhes on her back,

slashing her febrile skull

right left right right left.

Twang and thud.

Twang and thud.

Fun whore hair she chose for color

for life's last stage:  a flirty orange

plait in rasta raffia, that flew so

fast and far from side-to-side

they beat a staccato that fell apart,

a steady beat become dying

chaos, chaotic beeps,

fluorescent green waves

traced black on buzzing paper.

For lips. Ashley selected

a dissonant voice, a rich

and ripe bright pink,

traced somehow red

and smeared

on pillow cases.

O, teach me how I should forget to think! -- Romeo and Juliet, Act 1, Scene 1

PHOTO CREDIT: PhiladelphiaPhotos

UPDATED POST: do what you do...

UPDATE 6/23/2013

hello, you gorgeous loving readers, you!  i don't have it in me to write a whole new post about "my" caringbridge kids and families, but there are some updates some of you may appreciate.

sadly, ashley riemer died yesterday afternoon, but on her own terms -- at home, with her family.  her decline was rapid, such that some may call it a blessing.  she was up and about, even out shopping earlier in the week, and then on the 20th was brought low by pain.  hospice was ready, and her pain was managed.

she was elven; she was on the cusp of womanhood;  she was brave, ardent, angry, faithful.  she knew long before the blood tests and the bone marrow biopsies that this was the last fight.  i'd love to have known her at 90 -- i imagine blond and pink pig tails, cherry red lipstick and those cutting, pixie eyes.

her mom wrote, at the end of her post notifying everyone of her passing:  "Ashley donated her body to Georgetown Medical University as she was a lifelong learner."  damn straight.  good on you, ms. ashley.

brayden is on his make-a-wish trip, and enjoying it thoroughly.  like so many of my heroes, he is keeping those he loves and who love him, in laughter, no matter what.  his mom, maranda, writes:

I hope you all have had a nice week. I am sorry I have not updated, we have been so busy. The boys go, go ,go and then they drop. Brayden is totally in love with Blue Skies. He now is asking me to buy him, a jacuzzi bath tub- which he does not think would be too expensive. He also wants a golf cart- which he said should probably only cost about 5 dollars. 

brayden and his buddy nolan (nolan had to be admitted yesterday
for pneumonia, so good thoughts for brayden's best bud)

that's the end of this update.  i've discovered that crying clears up my vision much longer than eye drops.  keep brayden close to your heart, and ms. hannah, too, as she is in the midst of the planned destruction of her immune system prior to receiving what the whole darned world hopes is a life-saving bone marrow transplant, the gift of an anonymous lovely, adorable man in europe.  her mom updated this morning:

One week down in the BMT. Hannah's doing better thanks to Reglan/Benadryl & Zofran. She will get Cytoxan and ATG today. Please continue to pray she tolerates with no/minimal side effects. 

END OF UPDATE... thanks for tolerating my lazy blogging.

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

To begin with, and this is especially important for those of you visiting the blog for the first time, I found the doggone ankle brace.  Rather, Fred found it.  There are certain loads of laundry too heavy for me to transfer to the dryer, so he's frequently in receipt of the cryptic request, "Please transfer." Well, as he transferred one bedspread, guess what fell out, now not only a boon to a cracked ankle but also sweet smelling and spotless?  Yes, the thing that mashes all those plates, pins, and screws back into non-jostling positions.

The other thing a new visitor to the blog should know is that I (Retired Educator, aka profderien, alter ego of one Bianca Castafiore, the famed Milanese Nightingale -- oh just read "About this Blog" over in the right hand margin...).  Hellfire. Choo?  Train of thought?  Ah, yes.  I follow, at any given time, four pediatric cancer patients, patients that are in the beginnings, middlings, and endings of their journey's trek.  My means of following them is respectful and done primarily through a wonderful creation and organization called CaringBridge.org.  Support them if you can, and definitely check them out.  Remember that CaringBridge is there should your family ever suffer a medical crisis or catastrophe and need a means to communicate news to family and friends -- as well as to blog and vent, and cry and beg for prayers, and send complete strangers into whirling dervishes of ecstasy the day you are declared NED -- No Evidence of Disease.

But give it some thought.  For parents with kids given tough diagnoses, it's generally not a good sign for there to be extensive or regular blogging and journaling on CaringBridge.  Who'd have time, what with time proved so precious, and the days being near perfect now that the little ones are getting better?

All of which means that bad news is coming in, thus far, in twos.  I'm bewitched into the "it comes in threes" belief, and am waiting for the third bit of sadness.

In the middle of it all, great joy!  For Kate McRae, another completely clean MRI of both brain and spine.  "Miracle" is not much in my vocabulary -- you'll note it's even set aside here with the embracing arms of quotation marks.  This may be one, though.  There's no way this child should be alive, and as untouched by the ravages of the chemo and radiation as she is.  Oh, she was touched -- there are struggles, daily, and sadness at what she cannot do that she once could, but she's ALL there, is Miss Kate McRae.  She is every bit herself, and we're better as a species for it.

Kate McRae

Why don't the doctors listen to the mothers?  Or are there so many mothers tugging at the pediatric oncologist's hearts, telling them they "know" something is wrong, the cancer is back.  They "know" it but the protocol for the chemo, or the radiation, or the study, or the only schedule that insurance will pay for... is every 3 months, or sometimes even six.

Maranda has been struggling for so long now, her son Brayden cruelly afflicted with Metastatic Anaplastic Medulloblastoma.  He has relapsed several times.  And now has again.  I am trying to arrange a meeting with her, as we both live southwest of the Lone Alp, but perhaps this is not the best time to pop in for a coffee.  She has a toddler, is a single, unemployed mom.

Anyway, for you to stare at, enjoy, and contemplate as you meditate and pray for Brayden, here is a recent photo of the little guy.  I love his face.  It's grown up but it's tricky.  I bet he's a trickster... Peace on you, Brother Brayden, and on your mom Maranda, and on his favorite little person, his brother Mason.

Now, I do have a thing or two to say about Brayden and Maranda.  They treat Maranda, it sounds like to moi, somewhat badly as she struggles to get to the clinic as scheduled, without daycare for Mason, and having been pegged an overanxious mother.  She asked them repeatedly to move up the MRI and was pretty rudely brushed off, with suggestions for therapy for anxiety or some psycho-crapo get-her-off-my-back shit.  The day of the MRI, same day as Kate's, his oncologist was out of town.  After they got home, Brayden, who has trouble controlling his bowels, needed changing and Maranda set about doing that... and in the process, his leg bent the wrong way, and broke, badly.  So back they went to the hospital... and she exhausted, and he in pain, and she could not stop worrying about the MRI results, even with the drama of the broken leg.

So a nurse finally prints out the MRI report and hands it to her.

That's how she discovers Brayden has indeed relapsed, and that's how that nurse got herself a few precious minutes of not being stressed out by Brayden's Mom and her worry-wart ways.

Maranda is smart as a whip but waited for the oncologist's return, and her phone call.  Today.  Monday.

Brayden's cancer is back.Dr A called me this afternoon. I will be going over options with her tomorrow, she is even calling St Jude's and MD Anderson, please keep praying for God to heal Brayden. I don't want just a little longer here with Brayden. I want a lot longer and I know that's not promised to anyone but if you could all please pray for that I would really appreciate that.

Jeez life is painful sometimes. It is worth it though, I feel like my heart is broken. I will update tomorrow with whatever treatment is decided.

The other person who is in decline is no longer a child.  She had leukemia as a kid, and relapsed once.  Then, last year, first year of college, it came back.  She only qualified for a certain highly experimental protocol, and I think she knew from the beginning of this latest round in the fight, this last trek as a pilgrim, that this was going to be her death.  But it is coming now so fast and furious that my heart breaks at the thought that she might not be ready.  Which is pretty freaking presumptuous of me.

All I can do is show you the picture that made me fall in love with her, and tell you that Ashley is now suddenly on hospice care and in severe pain.  She is from a very religious and faith-driven family and community, and I hope that is a source of immense and unending comfort.  Throughout the past months, she's pitched a fit to be able to attend her Japanese classes, and has kept the state of her coiffure right where it should be -- at the forefront of everything.  She's a beautiful nymph. You'll see.  You'll fall in love, too.

Ashley Riemer, September 2012

I write tonight with the news of the biopsy results from last week. Ashley's cancer in her bone marrow is showing 70%. This is very high and alarming. Ashley is now receiving Hospice care for pain. 

Ashley Riemer, May 2013

Prayer of Pan Cogito – Traveller

Lord

Thank you for creating the world beautiful and of such variety

And also for allowing me in your inexhaustible goodness

To visit places which were not the scene of my daily torments

- for lying at night near a well in a square in Tarquinia while the swaying

bronze declared from the tower your wrath and forgiveness

and a little donkey on the island of Corcyra sang to mi from

its incredible bellowing lungs the landscape’s melancholy

and in the very ugly city of Manchester I came across

very good and sensible people

nature reiterated her wise tautologies the forest was

forest the sea was sea and rock was rock

stars orbited and things were as they should be – Jovis omnia plena

- forgive me thinking only of myself when the life of

others cruel and irreversible turned round me like the huge

astrological clock in the church at Beauvais

for being too cowardly and stupid because I did not understand

so many things

and also forgive me for not fighting for the happiness of

poor and vanquished nations and for seeing only moonrise and museums

- thank you for the works created to glorify you which

have shared with me part of there mystery so that in gross conceit

I concluded that Duccio Van Eyck Bellini painted for me too

and likewise the Acropolis which I had never fully understood

patiently revealed to me its mutilated flesh

- I pray that you do not forget to reward the white-haired old

man who brought me fruit from his garden in the bay of the island of Ithaca

and also the teacher Miss Hellen on the isle of Mull whose

hospitality was Greek or Christian and who ordered light

to be placed in the window facing Holy Iona so that human

lights might greet one another

and furthermore all those who had shown me the way and said

kato kyrie kato

and that you should have in your care the Mother from Spoleto

Spiridion from Paxos and the good student from Berlin who

got me out of a tight spot and later, when I unexpectedly

ran into him in Arizona, drove me to Grand Canyon which

is like a hundred thousand cathedrals standing on their heads

- grant O Lord that I may forget my foolish and very weary

persecutors when the sun sets into the vast uncharted

Ionian sea

that I may comprehend other men other tongues other suffering

and that I be not stubborn because my limitations are

without limits

and above all that I be humble, that is, one who sees

one who drinks at the spring

thank you O Lord for creating a world very beautiful and varied

and if this is Your temptation I am tempted for ever

and without forgiveness 

--Zbigniew Herbert

Daisy Merrick