Tuesday, December 31, 2013

A Poem for a New Year, Again. Once More. Encore Une Fois.

a Praise Song for the Day

Courtesy of the Academy for American Poets

A Poem for Barack Obama's [first] Presidential Inauguration
by Elizabeth Alexander

Each day we go about our business,
walking past each other, catching each other's
eyes or not, about to speak or speaking.

All about us is noise. All about us is
noise and bramble, thorn and din, each
one of our ancestors on our tongues. 

Someone is stitching up a hem, darning
a hole in a uniform, patching a tire,
repairing the things in need of repair.

Someone is trying to make music somewhere,
with a pair of wooden spoons on an oil drum, 
with cello, boom box, harmonica, voice.

A woman and her son wait for the bus.
A farmer considers the changing sky.
A teacher says, Take out your pencils. Begin.

We encounter each other in words, words
spiny or smooth, whispered or declaimed,
words to consider, reconsider.

We cross dirt roads and highways that mark
the will of some one and then others, who said
I need to see what's on the other side.

I know there's something better down the road.
We need to find a place where we are safe.
We walk into that which we cannot yet see.
Say it plain: that many have died for this day.
Sing the names of the dead who brought us here,
who laid the train tracks, raised the bridges, 

picked the cotton and the lettuce, built
brick by brick the glittering edifices
they would then keep clean and work inside of.

Praise song for struggle, praise song for the day.
Praise song for every hand-lettered sign, 
the figuring-it-out at kitchen tables.

Some live by love thy neighbor as thyself,
others by first do no harm or take no more
than you need. What if the mightiest word is love?

Love beyond marital, filial, national,
love that casts a widening pool of light,
love with no need to pre-empt grievance.

In today's sharp sparkle, this winter air,
any thing can be made, any sentence begun.
On the brink, on the brim, on the cusp,

praise song for walking forward in that light.

2014 was interesting, and we are grateful for having laughed and cried, screamed and muttered our way through it. You know how much I love my two brothers, TW and Grader "The Lumpy" Boob? Both imminently, eminently brilliant (and shiny, too, almost prismatic!), they both snicker and snort at pretty much the same things, in pretty much the same snick-and-snort style. Grader "The Lumpy" Boob, however, in a fit that combined what sounded like a combination of a cough, a hearty spit, a collegiate snick, and a lifelong snuffled snort

January 20, 2009.  President Obama's First Inauguration.

For information on Elizabeth Alexander, click HERE.

Monday, December 30, 2013

pure, unadulterated, worth-a-cry sappy!

  1. 1.
    excessively sentimental; mawkish.
  2. 2.
    (of a plant) containing a lot of sap.

hi, i'm in tremendous pain, nearly caving in to the claim of 9.9/10 on the idiot pain scale.

and constantly beginning, relearning my mindfulness lessons.  restarting relearning in three, two, one...

here is a portion of an entry by a CaringBridge child's mother about her son, whose prognosis is quite poor but whose attitude is awe-inspiring, but not the over-glucosed, rainbowed cotton-candy kind.  he's quite real, which makes that attitude ever more... mindful.

[i "adopt" 4 CaringBridge kids at a time, supposedly.  in actuality, i'm at 8 young ones, each a translation by their journal keeper.  most journal keepers are the mothers, and most are inspirational, themselves.  still, out of respect for the child, i sometimes read through, between, and under the lines to find him or her, and, as you have seen and shortly will again, i read photographs.]

the entry, with identities modified:

The journal picture I've included is of A and his two little brothers, ages 5 and 8.  After A finished chemo (before he spiked a fever), he had to make the long walk over to the cardiology clinic in order to get an echo and ekg.  Neither one of us wanted to make that walk for exams that were needed to close out the LEE011 study for A.  It was just salt in an already open wound.  By the time A finished the heart exams, he was feeling awful.  I asked him to let me hunt down a wheelchair (he had to go back to the oncology clinic to finish fluids) as his 5 year old brother grabbed his IV pole while his 8 year old brother offered to hold his hand.  I don't think I'll ever forget hearing A ask his 8 year old brother, "Hey Bro, can I put my arm around you to help me walk?"  A didn't wait for a wheelchair.  Instead, he slowly walked from one end of the hospital to the other with the help of two brothers who so tenderly love him.

and here is the photo she used to top her journal entry:

the journal keeper readily admits she's a pessimistic realist with a corrective heavenly guiding hand -- quite a combination, and one that i recognize.  i will admit with equal readiness that i would not trade places with her or with A, nor with A's two brothers.

however, she (and i) are working on our attitudes, sometimes with that corrective guidance, sometimes with simple mindfulness -- just sit in it and be -- -- -- -- and so it was that one of the most (personally) beautiful photos i've ever seen was snapped by daisy love merrick's mother, before her last relapse. i bet that was one sassy, swishy walk.  when renaming the photo to match my recollection patterns, i chose "daisy walks away in peace." and so she did.

okay, you tough ones.  you know who you are.  you think you are impervious to my sap, my sappiness. well, friend, gird your loins... because i know for a bona fide fact that daisy love merrick walks this earth, complete with her funky, hippy clothes, and her sassy, swishy walk, and her unique grin (involves the meteoric impact of freckles), as well as her always-remembered mother, father, and sweet brother, and scads of surfing fanatics. but she does not walk alone -- and not with wraith-like holograms of her loved ones -- no!  she walks with treebeard, the eldest of the ent species.  put that in your sap pipe and smoke it.


hat tip to treebeard:

  1. 1.
    excessively sentimental; mawkish.
  2. 2.
    (of a plant) containing a lot of sap.

© 2013 L. Ryan

Thursday, December 26, 2013

"Do not be afraid!"

The Vatican's official English-language translation of Pope Francis' prepared homily, delivered in Italian, during Christmas Eve Mass Tuesday in St. Peter's Basilica.

"The people who walked in darkness have seen a great light"(Is 9:1).

This prophecy of Isaiah never ceases to touch us, especially when we hear it proclaimed in the liturgy of Christmas Night. This is not simply an emotional or sentimental matter. It moves us because it states the deep reality of what we are: a people who walk, and all around us - and within us as well - there is darkness and light. In this night, as the spirit of darkness enfolds the world, there takes place anew the event which always amazes and surprises us: the people who walk see a great light. A light which makes us reflect on this mystery: the mystery of walking and seeing.

Walking. This verb makes us reflect on the course of history, that long journey which is the history of salvation, starting with Abraham, our father in faith, whom the Lord called one day to set out, to go forth from his country towards the land which he would show him. From that time on, our identity as believers has been that of a people making its pilgrim way towards the promised land. This history has always been accompanied by the Lord! He is ever faithful to his covenant and to his promises. "God is light, and in him there is no darkness at all" (1 Jn 1:5). Yet on the part of the people there are times of both light and darkness, fidelity and infidelity, obedience, and rebellion; times of being a pilgrim people and times of being a people adrift.

In our personal history too, there are both bright and dark moments, lights and shadows. If we love God and our brothers and sisters, we walk in the light; but if our heart is closed, if we are dominated by pride, deceit, self-seeking, then darkness falls within us and around us. "Whoever hates his brother - writes the Apostle John - is in the darkness; he walks in the darkness, and does not know the way to go, because the darkness has blinded his eyes" (1 Jn 2:11).

2. On this night, like a burst of brilliant light, there rings out the proclamation of the Apostle: "God's grace has been revealed, and it has made salvation possible for the whole human race" (Tit 2:11).

The grace which was revealed in our world is Jesus, born of the Virgin Mary, true man and true God. He has entered our history; he has shared our journey. He came to free us from darkness and to grant us light. In him was revealed the grace, the mercy, and the tender love of the Father: Jesus is Love incarnate. He is not simply a teacher of wisdom, he is not an ideal for which we strive while knowing that we are hopelessly distant from it. He is the meaning of life and history, who has pitched his tent in our midst.

3. The shepherds were the first to see this "tent", to receive the news of Jesus' birth. They were the first because they were among the last, the outcast. And they were the first because they were awake, keeping watch in the night, guarding their flocks. Together with them, let us pause before the Child, let us pause in silence. Together with them, let us thank the Lord for having given Jesus to us, and with them let us raise from the depths of our hearts the praises of his fidelity: We bless you, Lord God most high, who lowered yourself for our sake. You are immense, and you made yourself small; you are rich and you made yourself poor; you are all-powerful and you made yourself vulnerable.

On this night let us share the joy of the Gospel: God loves us, he so loves us that he gave us his Son to be our brother, to be light in our darkness. To us the Lord repeats: "Do not be afraid!" (Lk 2:10). And I too repeat: Do not be afraid! Our Father is patient, he loves us, he gives us Jesus to guide us on the way which leads to the promised land. Jesus is the light who brightens the darkness. He is our peace. Amen.

Saturday, December 21, 2013

Henri, le chat existentialiste, nous explique tout...

Henri 5, "The Worst Noël" -- uploaded to YouTube by Henri le Chat Noir

Un cadeau du sein des coeurs de nos amis Marmy FluffyButt, Buddy (grand chaton scandaleux), et 

Dobby, celui qui n'est comparable qu'à soi.

*h/t to Fred, upon whom all things darkly existential descend.

Thursday, December 19, 2013

News Flash! Fred Has Extra Large Brain But NO Acoustic Neuroma!

Are you seated?  This post contains nothing but the best of news.

First, that which was already assumed to be true has now been confirmed by scientific evidence.  Fred's skull contains the largest and most active neural network ever documented, such that it is beyond the linguistic limits of the definition for "brain."  Therefore, all those arguments I so egotistically placed in my Win Column were Pity Wins.

I am appropriately awed, and retroactively chastised.

Second, and an occasion for bubbly, if ever there was one:  Fred had his MRI this afternoon and was told but a few hours later that nothing showed in or between his fleshy ears except the aforementioned surplus of smarts.

Relieved not to have a brain tumor that favors the brain stem, Fred is still facing the unexplained loss of hearing in his right ear and the acquisition of annoying noise in lieu of my soothing dulcet tones.  It's a hard blow for a dedicated audiophile and student of several musical instruments.

Even so, as I'm fond of watching him snorkel his way around the moat during the daily algae inspection, while I sip my coffee from the drier climes of the drawbridge, I am here to help him deal with hearing loss, but so much happier a helpmate than if he were facing brain surgery and facial nerve paralysis.

Thanks so very much to those of you who have kept Fred in mind and prayer.

© 2013 L. Ryan

Monday, December 16, 2013

My Hero Hannah Needs Your Help

Please excuse this unusually terse entry -- more on that in the next terse post -- but time is of the essence!
[If you don't recall Hannah, click on her bolded, underlined, and capitalized name just below this, my favorite photo of her, called "Hannah's Crane."]

HANNAH is my hero because:

  • she faced osteosarcoma like a mentally seasoned champion, not a young, untested girly-girl
  • with her family, she chose a relatively new option for the surgical removal of the tumor in her leg -- rotationplasty
  • she faced recovery and rehab from the rotationplasty with courage and a grand work ethic
  • part of the therapy for osteosarcoma, as for most cancers, involved radiation and chemotherapy, and these things, too, she struggled through with beautiful style (as beautiful as one can be whilst throwing up)
  • just when all seemed well, hannah developed one of the side effects of her chemotherapy -- leukemia (and if that isn't a kick in the stomach, what is?)
  • as if that were not enough, the osteosarcoma reared its ugly head again, traveling to her lung, and she underwent surgery to remove that cancerous nodule.
  • she undertook this challenge as she did all the others, in beauty and ferocity
  • but still, she needed a bone marrow transplant to defeat the leukemia, a truly arduous and scary procedure
  • now post-transplant, she and her family live with the fear of rejection syndrome and further spread of the osteosarcoma, so every symptom that you or i might consider trivial, they must treat as potentially life-threatening and make a run to the doctor or ER...
  • and they do all these things with grace, humor, and the requisite NEGU attitude (Never Ever Give Up)

I think you get the gist of it, yes?  She is doing well but the struggle is not over, and while she became my hero when I read about her choice of the rotationplasty at the beginning of her journey, I imagine that as she grows, in emotional and physical age, that choice will provide her with some challenges as well as its many benefits.  But that's ME talking and projecting my weaknesses onto Hannah.  Excuse me!

Her mom posted this request today and I hope as many of my bazillion readers as can will place an order to help them out with the medical bills and the bills of daily living that have had to be pushed aside for two years.  Shoot, I will project one of my major pet peeves onto the Smith family: parking fees! Never mind the cost of all the traveling they've had to do for treatment, just think of the darned parking fees at all those hospitals, doctors' offices, and "medical buildings."  I may hold a fundraiser for myself one day, just for parking fees...

Oops.  Train of thought, off the tracks once again.

Here is Hannah's Mom's message:

1 hour ago
Hannah has designed a T-shirt that is on her favorite color. It is a fundraiser and we need your help. You only have until Thursday to pre-order. $15 each and will be shipped 2 weeks after the end of the last order date. Our goal is 150 shirts but we only have 89 ordered so far. Can you help? Here's the link:


Thank you for your help! 

© 2013 L. Ryan

Thursday, December 5, 2013

Inside Edition Airs Two CRPS Videos

*hmmm. i am not sure why the two Inside Edition vids begin playing automatically.  my apologies for the onslaught of sudden noise.  perhaps {she prays} the problem will just disappear.  [this is why i had to abort my career as a Life Coach.]
*well, i got so fed up finally that i replaced the vids with links TO the vids.  apologies (again) for the inconvenience.

They're simplistic by necessity -- how to explain CRPS in roughly three minutes -- but a good introduction.  I am awed by the woman who gets relief from people rubbing her leg, with a rough looking blanket, no less, but beyond that, it's a fair depiction.  How I wish, though, that those of us with CRPS did not sound so certifiably insane in our verbal attempts to share what its pain is like!  The python reference was a new one for me.

I have trimmed down my answer (in non-blog life) to:  "The pain is constant and severe. It varies from burning to stabbing to throbbing.  If accompanied by spasms, it is intolerable."

In between the two Inside Edition videos, I've inserted one of my own old "standards." It's about 2.5 years old, and things aren't better, so use your vivid imagination -- in technicolor! I WISH I had the "problem" of people thinking there is nothing wrong with me.  My problem is that when strangers, even medicos, see my feet or legs for the first time, they offer to drive me to the Emergency Room.  Seriously!  My first visit to my shoulder orthopedic surgeon, his nurse kept saying:  "But, sweetie, we can't even look at your shoulder until you go get that foot treated!  Were y'all in a wreck on the way here?" She now doesn't even flinch.

Doctor Explains Mysterious CRPS Condition

Mysterious CRPS Condition Hits Home For Inside Edition Reporter

Monday, December 2, 2013

RSDSA: supporting the CRPS community

hi, beloved readers!  this is a hijacked ealert from the inimitable jim broatch of RSDSA.  CRPS is devastating, in so many ways.  there are the physical symptoms, and with years of intense, unrelenting pain come depression and anxiety.  friends and family tend to disappear.  the patient grows more disabled, less mobile, and is isolated.  financial ruin almost seems like another -- often ignored -- impact of CRPS.

consider giving someone in severe pain and struggling mightily a hand this year.  

good on ya!

RSDSA with Mission 

Dear Beloved Readers of elle est belle la seine la seine elle est belle:

This year on Tuesday, December 3, 2013, RSDSA is part of a call to action that will change the calendar and help make history. We are celebrating a day dedicated to giving - when charities, families, businesses, community centers, students, retailers, and more will come together for #GivingTuesday - a movement to celebrate giving and encourage more, better and smarter giving during the Holiday Season that we are proud to be a part of.

#GivingTuesday will create a day of giving around the annual shopping and spending season. Tomorrow is our "opening day." Starting December 3, we invite you to be part of this celebration. #GivingTuesday will show how the world can do much more with our wallets than just consume.

Please visit us at http://www.rsds.org/donate.html and consider celebrating this Holiday Season with a gift to The Patient Assistance Fund In Honor of Brad Jenkins and help those in need. When you donate please specify that the donation is for the Patient Assistance Fund in Honor of Brad Jenkins.

Many people with CRPS are unable to afford basic medical needs. Since its inception, the Patient Assistance Fund, has helped needy individuals with CRPS in various ways. Some examples include:
  • Adaptive controls for a motor vehicle  
  • Travel and lodging costs for individuals to consult with out-of-state pain specialists
  • Phone consultations with a pain psychologist for individuals with CRPS whose insurance refused to pay
  • Four visits at a reduced fee with a pain specialist for an individual without insurance 
CRPS can be financially devastating. Many people with CRPS lose their jobs and health insurance. Paying for medication, treatments, medical equipment and doctor's visits can be impossible. RSDSA intends to dramatically increase the Patient Assistance Fund to help many more individuals who have suffered financial devastation because they developed CRPS. 

With your help, we can provide larger grants to those in need - to adapt a home to make it easier and safer for a wheelchair bound person to get around, or to provide durable medical equipment, such as wheelchairs, scooters, walkers, and other adaptive devices. 

Our ultimate goal is to be able to work with local government and community programs to provide all those who suffer with CRPS the assistance they need when they need it.    

Please help RSDSA make a huge difference in the lives of people with
CRPS by making a tax-deductible donation today.

Be sure to visit the RSDSA website for the latest CRPS/RSD information including new treatment options, valuable resources, upcoming events, and Support Group in your area.
Click Here to Visit Now!

Friday, November 29, 2013

CRPS: Inflammatory, Neuropathic and Immunologic?

Toronto—Researchers tasked with developing a rudimentary understanding of complex regional pain syndrome (CRPS) are dividing their attention in several different directions. According to several experts who spoke at the 2013 International Congress on Neuropathic Pain, there is evidence for inflammatory, neuropathic and immunologic roots to the enigmatic syndrome, and further investigation into these three aspects of the syndrome is necessary for the development of more effective treatments.

“These different contributing factors all influence each other, so we need to address all of them so that patients don’t get onto a downward spiral where each factor worsens another,” Anne Louise Oaklander, MD, PhD, associate neurologist at Massachusetts General Hospital and associate professor at Harvard Medical School, both in Boston, told Pain Medicine News after attending the panel discussion.

Not a Perfect Fit
Ralf Baron, MD, vice chair of the Department of Neurology and head of the Division of Neurological Pain Research and Therapy at the University Hospital Schleswig-Holstein in Kiel, Germany, told attendees that until recently, CRPS was understood to be clearly a neuropathic pain disorder. However, CRPS does not fit with the 2008 redefinition of neuropathic pain, defined as “pain arising as a direct consequence of a lesion or disease affecting the somatosensory system” (Neurology 2008;70:1630-1635).

“CRPS is neuropathic in that there are characteristic neuropathic sensory abnormalities, but it also shows signs of central sensitization, inflammation, and autonomic and motor abnormalities,” Dr. Baron told attendees.

One way of grouping CRPS patients is by looking at their distinct somatosensory dysfunctions, Dr. Baron suggested. Individuals with deficits in temperature detection but no allodynia, and with loss of small nerve fibers, innervation and nerve degeneration, can be classified as having a neuropathic disorder. A second cluster of patients can be seen as having central sensitization, with normal temperature sensitivity but severe mechanical and thermal hyperalgesia. A third patient cluster may have inflammatory CRPS, with deep hyperalgesia and heat hyperalgesia but no hyperalgesia to prick testing, Dr. Baron explained.

An Autoimmune Disease?
Another way of understanding CRPS, proposed by Andreas Goebel, MD, PhD, senior lecturer and honorary consultant at the University of Liverpool and Walton Centre National Health Service Foundation Trust in Liverpool, United Kingdom, is that a subset of CRPS patients have an autoimmune disorder–related condition.

“It is possible that a regional immune response is triggered following stress, inflammation and trauma,” he posited.

Dr. Goebel believes some of the 15% of CRPS patients with refractory symptoms lasting longer than six to 12 months may fall into this group (Pain 2009;142:218-224). He noted that several studies support the autoimmune paradigm, with results showing that a subset of CRPS patients have elevated levels of serum antibodies to several bacterial pathogens.

“Furthermore, there is evidence for CRPS serum immunoglobulin binding to peripheral nerves,” he said (Neurology 2004;9:1734-1736).

Indeed, several small case series, including his own, have demonstrated the efficacy of intravenous immunoglobulin G (IgG) in subsets of patients with long-standing, refractory CRPS, Dr. Goebel said (Pain Med 2002;3:119-127). Additionally, a randomized controlled trial of 12 patients with long-standing CRPS who received the agent found that 25% had pain relief at least 50% relative to baseline and 17% had improvements in pain between 30% and 50% (Ann Intern Med 2010;152:152-158).

Although IgG has anti-inflammatory effects in addition to being an immunomodulator, Dr. Goebel believes IgG’s efficacy is likely not explained by its anti-inflammatory effect.

“All of the investigations which we have done, both in the lab and clinically, have been leaning more and more toward confirming there is an autoimmune aspect to CRPS,” Dr. Goebel concluded. “However, since we do not know which structures the autoimmune response is targeting, our current evidence remains somewhat indirect.”

According to Dr. Goebel, if some patients in fact have CRPS of autoimmune origin, “a range of potential therapies, such as therapeutic plasma exchange and B-cell modulating therapies, can be at our disposal.

“These have all been tried and tested in other autoimmune disorders, and we can have access to an armamentarium that we did not have before,” he said.

An “Ultralocal” Inflammatory Response?
Frank Huygen, MD, PhD, professor of anesthesiology at Erasmus Medical Center in Rotterdam, the Netherlands, argued the inflammatory component to CRPS could be the most clinically meaningful element of the syndrome in some patients. However, rather than looking for systemic inflammation, he believes researchers need to consider an “ultra-local” inflammatory response.

“There are inflammatory mediators that are increased in the blister fluid of an involved extremity in CRPS,” Dr. Huygen said.

His own research has documented increased levels of interleukin-6 and tumor necrosis factor (TNF)-alpha in some patients (Eur J Pain 2008;12:716-721).

In a small, placebo-controlled, randomized trial, Dr. Huygen and his colleagues showed that the anti-TNF drug infliximab (Remicade, Janssen) exacerbated symptoms in some CRPS patients, leading to discontinuation of the trial (Pain Pract 2013; May 22: doi: 10.1111/papr.12078). The researcher still believes there could be a role for infliximab and other biologics in the treatment of CRPS.

“Although the sponsor stopped the study early, preliminary data showed enormous reductions in TNF-alpha levels in blister fluid with infliximab treatment, but these did not correlate with clinical changes,” he said.

Summarizing the challenge of understanding and treating a complex syndrome, Dr. Baron suggested CRPS should no longer be seen monolithically as a neuropathic disorder.

“As long as we do not have a clearer pathophysiological picture of CRPS patients, and because of the obvious heterogeneity of the signs, symptoms and mechanisms of the syndrome,” he said, “it would be wise to look at the condition separately from other classical neuropathic pain syndromes.”
—David Wild

Thursday, November 28, 2013


To have been delivered at Plymouth, Massachusetts, 1970
Three hundred fifty years after the Pilgrims began their invasion of the land of the Wampanoag, their "American" descendants planned an anniversary celebration. Still clinging to the white schoolbook myth of friendly relations between their forefathers and the Wampanoag, the anniversary planners thought it would be nice to have an Indian make an appreciative and complimentary speech at their state dinner. Frank James was asked to speak at the celebration. He accepted. The planners, however , asked to see his speech in advance of the occasion, and it turned out that Frank James' views — based on history rather than mythology — were not what the Pilgrims' descendants wanted to hear. Frank James refused to deliver a speech written by a public relations person. Frank James did not speak at the anniversary celebration. If he had spoken, this is what he would have said:

I speak to you as a man -- a Wampanoag Man. I am a proud man, proud of my ancestry, my accomplishments won by a strict parental direction ("You must succeed - your face is a different color in this small Cape Cod community!"). I am a product of poverty and discrimination from these two social and economic diseases. I, and my brothers and sisters, have painfully overcome, and to some extent we have earned the respect of our community. We are Indians first - but we are termed "good citizens." Sometimes we are arrogant but only because society has pressured us to be so.
It is with mixed emotion that I stand here to share my thoughts. This is a time of celebration for you - celebrating an anniversary of a beginning for the white man in America. A time of looking back, of reflection. It is with a heavy heart that I look back upon what happened to my People.
Even before the Pilgrims landed it was common practice for explorers to capture Indians, take them to Europe and sell them as slaves for 220 shillings apiece. The Pilgrims had hardly explored the shores of Cape Cod for four days before they had robbed the graves of my ancestors and stolen their corn and beans. Mourt's Relation describes a searching party of sixteen men. Mourt goes on to say that this party took as much of the Indians' winter provisions as they were able to carry.
Massasoit, the great Sachem of the Wampanoag, knew these facts, yet he and his People welcomed and befriended the settlers of the Plymouth Plantation. Perhaps he did this because his Tribe had been depleted by an epidemic. Or his knowledge of the harsh oncoming winter was the reason for his peaceful acceptance of these acts. This action by Massasoit was perhaps our biggest mistake. We, the Wampanoag, welcomed you, the white man, with open arms, little knowing that it was the beginning of the end; that before 50 years were to pass, the Wampanoag would no longer be a free people.
What happened in those short 50 years? What has happened in the last 300 years? History gives us facts and there were atrocities; there were broken promises - and most of these centered around land ownership. Among ourselves we understood that there were boundaries, but never before had we had to deal with fences and stone walls. But the white man had a need to prove his worth by the amount of land that he owned. Only ten years later, when the Puritans came, they treated the Wampanoag with even less kindness in converting the souls of the so-called "savages." Although the Puritans were harsh to members of their own society, the Indian was pressed between stone slabs and hanged as quickly as any other "witch."
And so down through the years there is record after record of Indian lands taken and, in token, reservations set up for him upon which to live. The Indian, having been stripped of his power, could only stand by and watch while the white man took his land and used it for his personal gain. This the Indian could not understand; for to him, land was survival, to farm, to hunt, to be enjoyed. It was not to be abused. We see incident after incident, where the white man sought to tame the "savage" and convert him to the Christian ways of life. The early Pilgrim settlers led the Indian to believe that if he did not behave, they would dig up the ground and unleash the great epidemic again.
The white man used the Indian's nautical skills and abilities. They let him be only a seaman -- but never a captain. Time and time again, in the white man's society, we Indians have been termed "low man on the totem pole."
Has the Wampanoag really disappeared? There is still an aura of mystery. We know there was an epidemic that took many Indian lives - some Wampanoags moved west and joined the Cherokee and Cheyenne. They were forced to move. Some even went north to Canada! Many Wampanoag put aside their Indian heritage and accepted the white man's way for their own survival. There are some Wampanoag who do not wish it known they are Indian for social or economic reasons.
What happened to those Wampanoags who chose to remain and live among the early settlers? What kind of existence did they live as "civilized" people? True, living was not as complex as life today, but they dealt with the confusion and the change. Honesty, trust, concern, pride, and politics wove themselves in and out of their [the Wampanoags'] daily living. Hence, he was termed crafty, cunning, rapacious, and dirty.
History wants us to believe that the Indian was a savage, illiterate, uncivilized animal. A history that was written by an organized, disciplined people, to expose us as an unorganized and undisciplined entity. Two distinctly different cultures met. One thought they must control life; the other believed life was to be enjoyed, because nature decreed it. Let us remember, the Indian is and was just as human as the white man. The Indian feels pain, gets hurt, and becomes defensive, has dreams, bears tragedy and failure, suffers from loneliness, needs to cry as well as laugh. He, too, is often misunderstood.
The white man in the presence of the Indian is still mystified by his uncanny ability to make him feel uncomfortable. This may be the image the white man has created of the Indian; his "savageness" has boomeranged and isn't a mystery; it is fear; fear of the Indian's temperament!
High on a hill, overlooking the famed Plymouth Rock, stands the statue of our great Sachem, Massasoit. Massasoit has stood there many years in silence. We the descendants of this great Sachem have been a silent people. The necessity of making a living in this materialistic society of the white man caused us to be silent. Today, I and many of my people are choosing to face the truth. We ARE Indians!
Although time has drained our culture, and our language is almost extinct, we the Wampanoags still walk the lands of Massachusetts. We may be fragmented, we may be confused. Many years have passed since we have been a people together. Our lands were invaded. We fought as hard to keep our land as you the whites did to take our land away from us. We were conquered, we became the American prisoners of war in many cases, and wards of the United States Government, until only recently.
Our spirit refuses to die. Yesterday we walked the woodland paths and sandy trails. Today we must walk the macadam highways and roads. We are uniting We're standing not in our wigwams but in your concrete tent. We stand tall and proud, and before too many moons pass we'll right the wrongs we have allowed to happen to us.
We forfeited our country. Our lands have fallen into the hands of the aggressor. We have allowed the white man to keep us on our knees. What has happened cannot be changed, but today we must work towards a more humane America, a more Indian America, where men and nature once again are important; where the Indian values of honor, truth, and brotherhood prevail.
You the white man are celebrating an anniversary. We the Wampanoags will help you celebrate in the concept of a beginning. It was the beginning of a new life for the Pilgrims. Now, 350 years later it is a beginning of a new determination for the original American: the American Indian.
There are some factors concerning the Wampanoags and other Indians across this vast nation. We now have 350 years of experience living amongst the white man. We can now speak his language. We can now think as a white man thinks. We can now compete with him for the top jobs. We're being heard; we are now being listened to. The important point is that along with these necessities of everyday living, we still have the spirit, we still have the unique culture, we still have the will and, most important of all, the determination to remain as Indians. We are determined, and our presence here this evening is living testimony that this is only the beginning of the American Indian, particularly the Wampanoag, to regain the position in this country that is rightfully ours.
September 10, 1970


by W. S. Merwin

with the night falling we are saying thank you
we are stopping on the bridges to bow from the railings
we are running out of the glass rooms
with our mouths full of food to look at the sky
and say thank you
we are standing by the water thanking it
smiling by the windows looking out
in our directions

back from a series of hospitals back from a mugging
after funerals we are saying thank you
after the news of the dead
whether or not we knew them we are saying thank you

over telephones we are saying thank you
in doorways and in the backs of cars and in elevators
remembering wars and the police at the door
and the beatings on stairs we are saying thank you
in the banks we are saying thank you
in the faces of the officials and the rich
and of all who will never change
we go on saying thank you thank you

with the animals dying around us
our lost feelings we are saying thank you
with the forests falling faster than the minutes
of our lives we are saying thank you
with the words going out like cells of a brain
with the cities growing over us
we are saying thank you faster and faster
with nobody listening we are saying thank you
we are saying thank you and waving
dark though it is

Sunday, November 24, 2013

I Flushed the Toilet [Now updated by photojournalism...]

 photo c24a05c8-e632-4d67-9e59-4bc42235a2eb.jpg
MONDAY PHOTO UPDATE:  my friend diana broke her foot (a much more serious injury, i think) -- also on saturday. and it was her birthday! i'm thinking conspiracy, i'm thinking international plots, espionage, some sort of orthopedic movement of oppression! so we toddled to the doc, who was more obsessed with my right foot than my broken wrist.  "it's gangrenous," he whispered, adding the observant:  "it's PURPLE!"  by the time we got there, ulnar nerve palsy had set in, which is the reason for the attempt to splint my last two fingers straight out.  you can see that they are defiantly curling under toward the palm, snickering at the pathetic attempt.  still, diana got the raw deal.  send either one of us a crate of nicely aged single malt, and a spirit of thanksgiving might yet survive.

I've always longed for great stories to go along with my broken bones.

"It was that double-back ziparoo round-off into a triple-toed handspring spring roll that broke my big toe, a small price to pay for Olympic Gold..."

That sort of thing.

A few weeks back, I cracked the crapola out of my left lower shin.  I got my leg trapped between my speeding wheelchair and a mop.

Last night...

Oh, you don't need to know.

It's not like there is any snow or ice here.
No deeds of derring-do.
Not even any house-cleaning.
Haven't been wrestling Buddy the Outrageosly Large Maine Coon for his weird Mr. Potato Head, made of cheap felt.  Well, I have, but without injury.
There've been no intrepid home invaders trying to leap into the house through a broken window over the washer.  That was last year, and this year, I have Bear Repellent.

But last night...

I flushed the toilet and may have fractured my ulna/wrist.

I went to bed straight away, with a handful of candy and my music playing very, very loudly in my oddly shaped earbuds.  Woke myself several times yelling as I pushed off on that hand in an effort to hoist the heft into a more comfortable position.  Then this morning, CRPS decided it was offended to have another of its territories maltreated, and the hand has gone ice cold. No swelling, no redness, no wrist at a right angle to its forearm.  It may be a tendon, a sprain, a nerve issue, a small fracture.  Like Honey Badger, CRPS don't care.

Icy CRPS?  It burns.  It hurts.  I cry.  I'm the portrait of immaturity.  I EMBODY immaturity.

And that place on my leg?  The swelling is almost all gone.  The bruise is still ugly but the pain much better. And... that precise area is hot.  Which may mean infection, though that's a hell of a stretch, especially since there is no hardware there.  Still.

So, baby that I am, I called go-to-guy doctor, wimpering and whining.  Was I partly driven because Fred called to say, "Oh, by the way, someone had an extra ticket to The Nutcracker... I will be a while."  Of course not.  Who gives a hoot, really?  I mean, I saw Baryshnikov in The Nutcracker in San Francisco. And everyone knows the music sucks, and, well, you know.  Ho ho ho.

The doctor said to apply ice, and I just have to politely ignore that.  He still knows nothing of basic CRPS care.  That got to me.  Elevate it.

Luckily, I didn't scream:  "If anyone gave a good goddamn they'd chop these appendages off, or slap two-dozen plus three (to die on) 100 mcg Fentanyl patches all over moi.  If anyone gave a good goddamn they'd shoot me between the eyes."

Good thing I decided to cook Fred, Bianca, Sven and a petulant Cabana Boy one kickass stir fry before going to the bathroom and FLUSHING THE TOILET.

Tomorrow, off we'll trot to get x-rays, and they'll be normal except for hairline nonsense and an alarmed radiologist who'll cry "osteoporosis out the wazoo," and run screaming down lead-lined hallways.

That's right.  I flushed the toilet.
Wanna make something of it?

Fred is hanging in there, by the way.  He's taking the high road and trying not to worry about his hearing. And WTF, he's at the freaking ballet.  One non-hearing ear, the other with tinnitus.  On his way home, he's picking up a wrist immobilizer.  That's the one piece of orthopedic equipment we are lacking.

© 2013 L. Ryan

"The undiscover'd country...": Sunday's bit of Shakespeare

Hamlet, Act III, Scene I [To be, or not to be]

  by William Shakespeare

To be, or not to be: that is the question:
Whether 'tis nobler in the mind to suffer
The slings and arrows of outrageous fortune,
Or to take arms against a sea of troubles,
And by opposing end them? To die: to sleep;
No more; and by a sleep to say we end
The heart-ache and the thousand natural shocks
That flesh is heir to, 'tis a consummation
Devoutly to be wish'd. To die, to sleep;
To sleep: perchance to dream: ay, there's the rub;
For in that sleep of death what dreams may come
When we have shuffled off this mortal coil,
Must give us pause: there's the respect
That makes calamity of so long life;
For who would bear the whips and scorns of time,
The oppressor's wrong, the proud man's contumely,
The pangs of despised love, the law's delay,
The insolence of office and the spurns
That patient merit of the unworthy takes,
When he himself might his quietus make
With a bare bodkin? who would fardels bear,
To grunt and sweat under a weary life,
But that the dread of something after death,
The undiscover'd country from whose bourn
No traveller returns, puzzles the will
And makes us rather bear those ills we have
Than fly to others that we know not of?
Thus conscience does make cowards of us all;
And thus the native hue of resolution
Is sicklied o'er with the pale cast of thought,
And enterprises of great pith and moment
With this regard their currents turn awry,
And lose the name of action.--Soft you now!
The fair Ophelia! Nymph, in thy orisons
Be all my sins remember'd.

Friday, November 22, 2013

Plagiarized from Jim Broatch of RSDSA: Supporting the CRPS Community

I have no shame.  This is straight from my gmail inbox.  May it inspire some CRPSer out there with the enthusiasm to volunteer, to fundraise, and become a glorious inspiration to us layabouts.  Had I a dependable bone in my body, I'd volunteer to write, edit, or proofread for the new electronic newsletter.  Since I don't, I'll pass along Jim's good words.

RSDSA with Mission 
Seeking Volunteer Writers, Editors, and Proofreaders for RSDSA Community Update
In September RSDSA published the inaugural issue of the RSDSA Community Update, our new electronic newsletter. RSDSA has hired Jessica Begley to serve as the Managing Editor. Jessica is interested in building a team of volunteer contributing writers, editors, proofreaders, and individuals familiar with html production to help publish the RSDSA Community Update.

Our intention is to publish the newsletter on a bi-monthly basis. Our next issue is scheduled to be published in mid-December.
If you are interested in joining our team, please send an email to Jim Broatch at
November is Worldwide  RSD/CRPS Awareness Month - Please Donate Now!
Month of November

RSDSA is partnering with Christa Whightsel from RSD/CRPS Doesn't Own Me for this month-long campaign. You can help others affected by CRPS/RSD through the Patient Assistance Fund in honor of Brad Jenkins! Join us as we provide much needed support to our brothers and sisters who lack financial resources for daily needs such as heating oil, medical equipment, and help with medical costs. We all know medical care is expensive and so many go without because they cannot afford a doctor visit. The Patient Assistance Fund in honor of Brad Jenkins provides hope and access to quality care.
We are all in this together! Help others that need your support by donating to the RSDSA Patient Assistance Fund in Honor of Brad Jenkins.
Together we can make a difference! Please Click Here to Donate Now!
7th Annual RSD BenefitTo Benefit RSDSA - Join Us today and Help promote Awareness of RSD
Saturday, November 23, 2013
  • Time: - 7 - 11 pm
  • Location - Fashionhaus, 58 W. 40th St., 9th Floor, (between 5th & 6th Ave.), NY
  • Event Chair - Laura Belt Ponomareva: rsdbenefit@gmail.com 
  • Purchase Tickets -  Click Here 
  • Make a Donation - Click Here
lia sophia Jewelry Holiday Fundraiser  
A portion of all sales will be donated to the Patient Assistance Fund in Honor of Brad Jenkins
Now through December 7, 2013
  • Shop Securely Online - click on "Browse Our Jewelry," Enter "Brad Jenkins" as the hostess. Select your items and submit your order.
  • Orders - Orders must be received no later than Saturday, December 7th (Receive your order by December 19th in a special gift bag)
  • View Catalog - http://www.liasophia.com/andreasjewels
  • Questions - Contact your lia sophia advisor, Andrea Jenkins at 301.266.4836 or by email at  jewelsanjens@aol.com 
  • Details - Click Here to download a detail flyer on how to order  
RSD Cut-AThon in honor of Timothy Lucid
Tim Lucid is an 8th grade student at NCS who has recently been diagnosed with RSD after surgery for a fractured elbow. 100% of the proceeds goes to RSDSA and RSDHope.
December 7, 2013
  • Date - December 7, 2013
  • Location - Heidi's Clip Joint - 3685 Main Street, Warrensburg, NY 12885
  • Time - 12 - 4 pm
  • Details -  Click Here
2nd Annual Jingle Bell Benefit Run/Walk to Candy Cane Lane
Thursday, December 12, 2013
  • Time: 6:15 pm 
  • Starting Place - Fleet Fee, Vacaville, CA to Candy Cane Lane
  • Course - 2.5 round trip: Runners, Walkers Strollers and Bike welcome. The run is free. 
  • Contact - Jo Hewitt, 707.365.1228 or email bikejo24@aol.com
  • Donation - Click here to donate. 
Be sure to visit the RSDSA website for the latest CRPS/RSD information including new treatment options, valuable resources, upcoming events, and Support Groups in your area.
Click Here to Visit Now!