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: 
  • 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 -
  • Questions - Contact your lia sophia advisor, Andrea Jenkins at 301.266.4836 or by email at 
  • 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
  • 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!

Thursday, November 21, 2013

I'm Asking For Your Prayers

If you are new to my blog, welcome to a crazy place, an ambitious reflection of a complicated life, a crowded intellect, an ardent site of political yearnings, all wrapped up in an anonymizing fiction.  The Blog Back Story has me, the Profderien, and my partner of 23 years, Fred, living as squatters in a perversion of a small bit of Hergé's geography of the great Tintin books.  Captain Haddock's Marlinspike Hall is our home and our work, too.  Together with the inimitable Bianca Castafiore, the Milanese Nightingale, and a horde of genetically indentured Domestic Staff, we maintain the Haddock holdings, buff up the Caravaggio collection, and try to keep The Castafiore from helping too much -- she has been known to lust after the absent Captain, imbibe a tad bit much, and wax the Carrara marble spiral staircases.

Most of the blog is dedicated to my woes.  Truly.  Just hop around the archives, or simply bend close to your screen and cup a hand behind your ear and listen for the self-indulgent moaning.

When I do deign to mention Fred, I hope I do so with love but know that is not always evident.  Writing love is a hard task and my writing talents wane.  But know this:  I love Fred.

There are more things to say in that vein, more crass but equally true.  Things like... I owe Fred, I owe Fred everything.  Things like... Fred is a hero of the kind that are slowly drifting into the ether, fading from this orb.
Things like... there is no face I'd rather see, no voice I more long to hear.

He can piss me off like nobody's business but generally in that age-old way that provokes a roll-of-the-eye and a peeved cry of "Men!"

He does stuff like wash all the dishes but one.  He's cursed to have the most idiotic drivers in our region (west of the Lone Alp) end up in front of him on a two-lane road, and in a country where there are always double yellow lines and people who pass are considered uncouth.  He thrills at finding new and cheaper spray cleaners.  He goes to court to support women friends who are being stalked.  He welcomes people into the sanctuary at his house of worship, and often spends Friday nights killing bottles of communion wine at our next door neighbors rectory -- the Cistercians whose monastery is just past our apple orchard. Without Fred's attentiveness, the moat around Marlinspike Hall would be three feet thick with blooming red algae, blocking the emergence of the Captain's fleet of miniature submarines that travel the inner core's wormholes and the planet's high seas.

Fred paints, plays the piano, the guitar, and the ukulele.  He overcame a childhood of unimaginable abuse and survived his own acting-out.  The brain fascinates him, and he is one of those high end audio types.

It looks as if Fred may have a tumor called an acoustic neuroma.  He's not felt well since... well, I cannot honestly say, because he's studly.  At least since February/March.  He suddenly -- very suddenly -- lost all hearing in his right ear.  No pain.  Lots of fatigue.  Never close to being balletic, if possible he morphed into a dedicated klutz.  Actually, this last symptom is one we have difficulty gauging with any objectivity, as Fred will try to shorten any walking path by grazing door frames and finding ridiculously direct routes which frequently bruise his shins and stub his hairy toes.

If you will put up with some of my well-worn impropriety, the asshat of an internist, and the dipshit of a physician's assistant who saw him with remarkable frequency, considering this is a man of the old school we're discussing, who has to be feeling pretty gosh god-damned awful to set foot in a doctor's office... Ahem.  I lost the tight thread of my post.  The idiots he saw between March and this month, November, said "ear infection," said "antibiotics," said "ear drops," and essentially placed him in the basket of cases that should get better whether they did a damned thing, be that damned thing right or be that damned thing wrong.

He became dizzy.  Two weeks ago, he came home from the grocery store, shaken.  He'd gotten disoriented, shaky, almost blacked out.  Back to the doctor, who must have had his coffee enema that morning, for he finally referred dear Fred to an ENT.

The ENT found no evidence of the famed raging infection and set up some testing.  Acoustic neuromas are rare, and account for something like 1% of cases of unilateral hearing loss.  For reasons that Fred did not investigate ("Men!"), the doctor suspects that Fred is one of the one percent.  The ENT also, and rightly so, soft-pedaled what a "tumor near the cochlea" actually was, what it actually could do, what it could become, and what was entailed in treating it.

Despite our leather bustiers, dirndls, and tie-dyed lederhosen, we are a modern couple.  It took us longer than usual, but we eventually hit the internet for information.  Did I mention that Fred's degree is in neuropsychology and that he knows his way around the brain better than I know my way around Diderot's Salon of 1767?  An acoustic neuroma is essentially a non-cancerous brain tumor, slow-growing, but that grows in a terrible direction -- toward the brainstem.  It almost always impacts facial nerves and hearing loss is almost always permanent.

I'm trying to sublimate my pains and disabilities, trying to be supportive without being Pollyannish.  Truth be told, my sudden transformation into an irrepressible optimist would cause Fred to suffer a heart attack born of pure shock.

But I found myself ending an email to him -- Yes, we email each other within the same domicile.  Marlinspike Hall is a tremendous manor, and he is in the Computer Turret doing Important Computer Work, while I'm pecking away at my dilapidated laptop in our West Wing apartments, a cat on my head, a cat between my feet, a cat on watch at the window, and Castafiore taking up most of the king-sized decadent round bed, hooting and hollering at American college hoops.  I know, who knew?  Lounging on the Kodiac bear rug, toying with a massive paw of claws, not understanding basketball in the least, is Sven Feingold of the Manor Staff, whose family is genetically indentured to the maintenance of our Labyrinth, the highlight of our annual summer ManorFest.  Sven and Bianca are obnoxiously lusty, but on a cold November night, great fun.  The Castafiore is, at this moment, explaining "traveling" to Sven, who cares only for soccer, and I must say, I almost understand what she is saying.  For a few decades now, it looks to me as if everyone travels, usually in that one long stride from half court to the basket.


I ended my short email to The Fred this way:

For I am the Lord, your God, who takes hold of your right hand and says to you, Do not fear; I will help you. (Isaiah 41:13)
I am a huge Isaiah fan, and it's his time of year, and I could babble hundreds of embarrassed denials of my biblical sincerity... but this is Fred, and Fred's beautiful brain and hearing, steadiness and string-strumming, his kindness and abstract fingering of piano keys, his love of the Ethiopian sky, the sounds and smells of the Danakil. This is Fred we're talking about, a leitmotif on my blog, a raison d'être in my life.

We all have something tragic ongoing, already gone and ghostly, or on the way.  But I don't care -- I really don't.  I want this man, who has saved my life many times over and then taught me to be glad of it, to be healed.  Yes, I recognize the narcissism running rampant, but as you know, writ large in attitudinal font throughout elle est belle la seine is the ringing query:  Whose blog is it anyway?

Please pray for Fred.  You're so much more likely to have the words, the mien, the means.
Thank you.

[The relevant testing needed for diagnosis cannot begin until the first few weeks of December. I'll keep you apprised, Dear Reader.]

Bach's Jesu, Joy of Man's Desiring, in the well-known piano arrangement by Dame Myra Hess (published by Oxford), has single notes (not part of a chord) on the "wrong" side of the stem; this odd bit of notation occurs on the right-hand staff almost from beginning to end. Why? In the words of Sadie (2001), article "Notation", these are "reversed note shapes representing one strand of a complex texture."

© 2013 L. Ryan