Friday, April 9, 2010

Eddie Vedder:::Rise

It's not often I get stuck on advertising music.

Well, okay, every few months I develop a mild obsession.

The latest is a mostly glad reminder of Eddie Vedder days, Pearl Jam, and the Into the Wild flash in the pan (Sorry, I cannot get excited about the Emoroid's adventures [search for truth, search for meaning, search for freedom, search, search, search, die] but I like the smaller pearls of the soundtrack).

So these promos for the television show Deadliest Catch keep sidetracking me -- yes, they *are* running them quite often, and yes, I *am* using the t.v. for helpful white noise.

Let Eddie heal you, people.
Then go on your own road trip (keeping the meaningful details to yourself, except in the form of artistic production).

I'm sorry. It has been a... day.

Such is the way of the world
You can never know
Just where to put all your faith
And how will it grow

Gonna rise up
Burning back holes in dark memories
Gonna rise up
Turning mistakes into gold

Such is the passage of time
Too fast to fold
And suddenly swallowed by signs
Low and behold

Gonna rise up
Find my direction magnetically
Gonna rise up
Throw down my ace in the hole

Wednesday, April 7, 2010

For TW on the Occasion of His Birthday

Thanks, Fresca, for encouraging me to pursue giving to TW in the rich spirit of his own recent gifts.

I put it all in action, anyway, by asking my Brother-Units last year to consider packing boxes of Important Stuff From Their Lives in lieu of shrink-wrapped, brand-spanking new orders from Amazon.

Send only used items, I said. Send things that have mattered to you, at different times, over the years, I urged.

Grader Boob, ever difficult, sent me a $300 gift certificate to -- 'nuff said.

TW took me at my word and sent me a box of music, books, videos, prayer flags -- I held my breath, I am still holding my breath.

I understood the enormity of the gift, and my appreciation knows no bounds (He sent me another box for my birthday in January.).

But I did not understand the risk; I did not understand the fear. (TW subsequently joked that he was sure he would never hear from me again.)

Both need to be transcended, of course, for the gift to be given. Hell, for the gift to make it to the car for the trip to the Post Office, one has to be at a kind of peace.

I know this because the contents of my box for TW -- he shares Hitler's birthday, the one piece of trivia I always remembered about my lost older brother -- how he lamented that coincidence! I know this because the contents of my box for TW lie before me on a faded patchwork quilt. I cannot find a box big enough to hide everything in, so it is all there, mocking me.

But I am at a kind of peace.

I have resisted the urge to enclose a "blank sheet of paper... by way of explanation."

Do you remember that line? From Raise High the Roofbeams, Carpenters? I always felt (pretty much like every Perpetually Misunderstood Perpetual Adolescent when left alone with Salinger) that my brothers and I were Franny, Zooey, Buddy, and Seymour, that we were capable of every fey bit of wit, and might have authored each slight, or unwieldy, whimsy.

That line figures among the choice few to which my mind clings with relative accuracy. Funny, but while there's nothing of Holden Caulfield in my memory, there are a dozen or so references from the Glass Family series, and Nine Stories. (Haven't you chuckled to yourself, then hummed, just before crowing to your love, busy pulling a tee shirt over his wet-haired, curly head: "It's a fine day for banana fish, darling!"? Of course, if you were as sharp as you like to think you are, you would have chirped "This is a perfect day for bananafish." But who would say such a thing?)

An old man, compact, tiny, an old deaf-mute man, affixed with a cigar and mute eloquence, this old man gloms onto Buddy as he dashes around town the day of Seymour's wedding. It's hot to the point of melting good will, notes are being left in lipstick on mirrors, ice is melting in gin, lightly clinking, and the Matron of Honor brays like a donkey, she is that mad. The old and tiny deaf-mute, impeccable in his wedding duds -- Muriel's uncle, if it matters -- nods and smiles at whatever he imagines is going on, and, clearly, the goings-on have morphed into something downright congenial and civilized for the dear man.

It's a lot to load on the shoulders of a fictive game piece (He's always figured in my head as one of the Monopoly game piece do-dads -- but now that I have seen them, I see that he is not all there, not at all.

He is adequately depicted by the Top Hat, I suppose. Or is that a Bowler?

No, it's always been: dog, top hat, wheel barrow, race car, boot, iron, ship, and thimble. Not Lincoln's stern stovepipe, but not a squat close-fitting bowler either.

Well, obviously, I have the whole thing confused in my extra-leaky sieve-of-a-noodle -- confused, maybe, with the Monopoly Man?

It's hard, dealing with resounding meanings, seeking to rely on memory, cultural memories and personal ones, too. It's confusing. [A remembered image of GW Bush springs up, unbidden, unwanted, and there he is, shaking his large head and cartoon face above some podium, somewhere, lamenting "It's hard work..." over and over and over again.

Anyway, I've resisted the urge to explain to Tumbleweed the rationale driving the choice of items in his birthday box. How to say that seven times, already, in the course of my years, I have gotten rid of what mattered the most to me, materially. A few times, it was after heartbreak. A few more times, the culling harvest came on the heels of deep depression (once this involved a good Beaujolais and burning things in a crackling fire). A couple of instances simply reflected the need for money, and so my treasures were sold off, piece by piece. Several years ago, I realized that Fred had hoarding tendencies. I always knew this, I guess, but it reached a crisis point when my pain and disability began to dictate some real physical limitations. I was his defense against chaos -- not just my harpy's tongue, but my inbred need for cleanliness and order. I had always at least set the boundaries for his mess -- his office, his workroom, and so on.

But one day, his books were piled on my shelves. His collection of fine backscratchers were piled on top of my sundries, things much more genteel, Gregorian Chant and seashells.

Somewhere along the way, through the many moves, the incessant cleaning and sorting, stuff had lost its importance. I was filled with an urgency, a growing need to get rid of things. And so, I did. The difference between this latter instance and the times before? I did not reacquire. After I sent my favorite novel to the thrift store, along with a fine assemblage of American fiction, I did not reorder it six months later, desperate to reread what had once been so important.

Believe it or not, I did not finger meaningfully each besotten Memory Charm. I didn't sit with it, second-guessing, sighing. I remember tearing up one of two pictures I had of my paternal grandfather, disposing of several chapters from my thesis, preparing some fine Irish linens for donation -- all without a hint of a muscle twitch in my face.

It was, simply, time. I had enough, more than enough, and my gathering of things no longer represented me.

In other words, I was sure that there was nothing here for me to send to Tumbleweed, nothing that meant anything to me, nothing that met the requirements I had set last year for The Gifting. Any music I might choose was already music he would have, for I was instructed in things musical by our brother Grader Boob, who had been schooled, early on and most lastingly, by TW, himself.

Besides, he had given me the gift of his DeadHead days -- I had not tramped around the country making recordings, living large. No, I had it easy. And maybe I am a bit of what TW most derides -- maybe I am of the bourgeoisie, maybe I am a bit "pop" instead of "cool." His bookcases are full of resplendent nonfiction works of revolutionary ideology. I have all the Harry Potter, and I like Maeve Benchy.

He photographs, religiously, the Grand Canyon. I snap pictures of pink azaleas.

Yes, I almost defeated myself before beginning. He's my big brother and I want him to think well of me.

So I took the me out of it, in order to represent me, truly. I began to play a question game and let the answers commandeer the choices. Then I employed some common sense and returned those items beyond the pale of personal to their proper places in my home. TW does not have the right to everything meaningful, particularly when -- without that "blank sheet of paper... by way of explanation" -- the defining context for the thing is left out, left aside, or best left unsaid.

Beyond the pale. Yes, that's it, richly.

From Gary Martin's website, The Phrasefinder, the origins of beyond the pale:

Meaning: Unacceptable; outside agreed standards of decency.

Origin: Firstly, let's get get clear what word we are talking about here. It's
pale, and certainly not pail, - the phrase has nothing to do with buckets. The everyday use of the word pale is as the adjective meaning whitish and light in colour (and used to that effect by Procol Harum and countless paint adverts). This pale is the noun meaning 'a stake or pointed piece of wood'. It is virtually obsolete now except in this phrase, but is still in use in the associated words paling (as in paling fence) and impale (as in Dracula movies).

The paling fence is significant as the term pale became to mean the area enclosed by such a fence and later just the figurative meaning of 'the area that is enclosed and safe'.
So, to be 'beyond the pale' was to be outside the area accepted as 'home'.

Catherine the Great created a 'Pale of Settlement' in Russia in 1791. This was a western border region of the country in which Jews were allowed to live. The motivation behind this was to restrict trade between Jews and native Russians. Some Jews were allowed to live, as a concession, beyond the pale.

Pales were enforced in various other European countries for similar political reasons, notably in Ireland (the Pale of Dublin) and France (the Pale of Calais, which was formed as early as 1360).

The phrase itself comes later than that. The first printed reference comes from 1657 in John Harington's lyric poem
The History of Polindor and Flostella.

In that work, the character Ortheris withdraws with his beloved to a country lodge for 'quiet, calm and ease', but later venture further - 'Both Dove-like roved forth beyond the pale to planted Myrtle-walk'. Such recklessness rarely meets with a good end in 17th century verse and before long they are attacked by armed men with 'many a dire killing thrust'.
The message is clearly, 'if there is a pale, you should stay inside it', which conveys exactly the meaning of the phrase as it is used today.

(Besides, I have to save some things for Future Boxes.)

This is what I am sending TW:

A hand-loomed weaving from Nicaragua, the details of which tell the story of a farmer, a scarecrow, haystacks, and the crows, themselves. I wrote a short story based on this weaving. Maybe next box, I'll send the story along, to complete the gesture. It was a mystery, a real who-done-it, and took place in Texas. The background color is a deep purple. Somehow, the bright primary colors on top of that manage to be pretty instead of garish.

A Mercedes Sosa CD, just because of Gracias A La Vida:

A CD/DVD combo of Mark Knopfler and Emmylou Harris: Real Live RoadRunning. Okay, so this is not important to me... but it's something from Grader Boob to me, and I would like TW to have it. The same goes for the Marx Brothers Silver Screen Collection. Yes, I re-gifted.

A cassette of people (Gabriel Byrne, Minnie Driver, Colm Meaney...) reading The Poetry of William Butler Yeats.

The Definitive Collection: Nina Simone. 1959-74.

Neil Young: Live at Massey Hall, 1971.

A documentary on Townes Van Zandt -- Be here to love me. (I don't think I've ever before mentioned my total, total, total love of Townes Van Zandt on this blog before. I kind of liked the guy.)

Old Friends Live On Stage: Simon and Garfunkel. From the Old Friends tour -- "Their first and quite possibly last Second Coming for the Twenty-First Century..."
I very much appreciate how Simon chose to explain the thorny relationship between himself and Garfunkel -- "I don't think of Art Garfunkel as my friend. I think of him as family."

One worn copy of Thomas Savage's The Power of the Dog, with an afterword by Annie Proulx. The inside front cover, unfortunately, bears my scribbles about various mutual funds that I apparently was considering as investments. Trust me, if any of them were great picks, I'd pass them on.

T. H. White's The Book of Merlyn. A talisman, that book. Improbably, it is the book I have discarded and then replaced maintes fois. My folksy bible? I dunno. But I actually remember the very moment I first read the passage about Arthur's final meeting with Mordred, when he had almost brokered, hammered, hobbled together, and achieved -- a bit of truce, a peace -- when one of Mordred's officers saw a snake in the grass -- real, not proverbial -- and drew his "bright sword" to slay it:

The waiting armies, taking it for treachery, raised their shout of rage. The lances on both sides bowed to rest. And, as King Arthur ran towards his own array, an old man with white hair trying to stem the endless tide, holding out the knuckled hands in a gesture of pressing them back, struggling to the last against the flood of Might which had burst out all his life at a new place whenever he had dammed it, so the tumult rose, the war-yell sounded, and the meeting waters closed above his head.

Lancelot arrived too late.

Vasari's Lives of the Artists. I am having a hard time letting it go... but it will go.

The Thurber Carnival -- I am having a hard time letting it go, too, but only because it is a superb help when I am sick. It will go, too, but I am not sure that is the height of wisdom.

Despite TW's deep and abiding atheism, Thomas Merton's Conjectures of a Guilty Bystander -- because this is about what has been meaningful and important to me, and something must represent the considerable amount of time I have spent forcing myself on various fine monks at various fine monasteries -- my ideal vacation for many years! Odd that the dozen or so passages I marked up (at least I used a pencil) now leave me cold. But Merton stole my heart when I discovered he also read Oppen. [There is no need to send TW any copies of Oppen's poetry, as that is something I did within weeks of first finding him two years ago. If you are dear to me? You will, in short order, possess two books: George Oppen's Selected Poems and Disturbances in the Field by Lynne Sharon Schwartz. The latter is pure self-indulgence but I have tired of pretending to care. I like it, that's all. If you are especially beloved, there is much more to the Reading List, but also a greater likelihood that I will make you listen to Important Book Passages during Extended Late Night Readings. It's part of my secret plan to keep that group very, very small.]

A slim volume, also something I have discarded and repurchased a few times, but out of need and not want: A Tomb for Anatole by Stéphane Mallarmé, with daring translations by Paul Auster. [Uh-oh! In looking up that link to Amazon, I happened to see that there is a new version out, For Anatole's Tomb, Patrick McGuinness (Translator). I do not DARE scratch that itch in the face of my declarations about divestment, above!] I have little love for Mallarmé, in general, but abiding love of this project of his, to which I have returned each time the death of a child has joltingly brought the world to an end.

Except for a small clay figurine of a bonsai master, a malleable brooch in the shape and color of an autumn leaf, and a sample of my astounding collection of islamic prayer beads (I use them as Worry Beads), there remains only one more item for TW's box, this go-round:

The Complete Letters of Vincent Van Gogh Volumes I-III bound by the New York Graphic Society. These are my most prized of tomes, and I am happy to be sending them to my big brother, for I know that he will read and treasure them, in his turn. ["This collection requires, and rewards, a devoted reader."] These are the entire texts of every extant letter Vincent wrote to his brother Theo, with beautifully reproduced facsimiles interspersed throughout. Bought from an English professor at the University of Virginia who auctioned them on eBay, I opened his heavy box to find he had enclosed what amounts to a formal Letter of Introduction:

I am so pleased that these books have found an appreciative home.
I know that I enjoyed them and I am sure you will. I trust that you and
Vincent will have many enjoyable hours together.

If I can manage to find it, I plan to include a picture of Sleepy John Estes' hands. It is beautiful, a gift from many years back. It was an image from a CD liner that a photographer friend enlarged for Fred, who then had it framed for me. My best recollection is that I broke the frame, Fred was gonna repair it... and at that point, Sleepy John's hands are lost.

Maybe I will take on the search in time for Christmas. Someone should have those beautiful, bowed hands to look at.

Monday, April 5, 2010

Math Class Shadow and Other News of Higher Education

I just fielded the latest email from Grader Boob, one of my Brother-Units, in which he recommends the antics of Matthew Weathers, featured in the video below.

Known as user MDWeathers on YouTube, he describes himself this way:

I teach part time in the Math Department of Biola University, a private Christian university in a Los Angeles suburb. I also work in the Distance Learning Department there. I live four block from work. My most recent degree: Masters in Computer Science from USC.

Grader Boob, himself an English professor, had this to say for himself:


Just finished my conferences... I spent part of the day sniping at belligerent attitudes and senses of entitlement. The day started off fine, for I had all of the overachievers scheduled early on. It was later, with the tardies and the malcontents that the air turned electric.

That's right electric... not eclectic!

My conference policy is that since they're given a week off and see me only for a scheduled 10-minute meeting, I expect them to be on time. No lateness allowed. If they come late, they're absent. Well, several wanted to argue that point with me, so things got heated. But that's an argument I never lose--until they do their student evals and they all comment on the unfairness of the policy.

The entitlement came next, for a smugly grinning student couldn't figure out why I thought the tone of his business letter--ending in "Sneeringly yours"--was counterproductive. Our conversation then ranged over topics as diverse as the rubric by which the paper was graded to the poor research in the letter ("What do you mean that The **** [the university student newspaper] isn't an academic/scholarly source?"). Though I never raised my voice, I was as dismissive as I've ever been verbally to a student. So, of course, the young woman who was the next victim/conferee was petrified when she inched through the office door.

So that's been my day..and there's only 3 more days of conferences left! (Boy, what a griper!)

But this will all fade away should the Blue Devils play their game and silence the Bulldoggy crowd! I'm relying on YOUR team to help me out, and if they don't, you will certainly hear from me!

Hope all are well in [Marlinspike Hall, deep, deep in the Tête de Hergé (très décédé, d'ailleurs)].

Mucho amore.

Conferencer Boob the Erstwhile Grader

I am so glad to have been reminded -- so that I might, in turn, gently remind you -- that the Blue Devils are playing for the championship tonight.



Given the glancing treatment I recently afforded the topic of mental illness and CRPS, I thought it worth reposting this blog entry from April 2009. At that time, I was apparently reviewing some of my journals from 2005-2008. Of note? Varied and various hypocrisies, as it never seems to occur to me that I bear some sort of journalistic responsibility toward my CRPS confrères -- the same sort of responsibility I so excitedly place as a burden on others' shoulders:

This morning, I've been reading through old diary entries. Not much is worth salvaging. Now and then, I actually got beyond the lint in my navel. For example, last June, I went off on Cynthia Toussaint and her repugnant attempts to designate CRPS as "the suicide disease."

Before I spout off in this odd temporal fold of today and yesteryear, let me say that Toussaint's work on behalf of people with CRPS and, particularly, for her Women-in-Pain Initiative, has been a grand and noteworthy "awareness raising."

It just now occurs to me that you might not know who she is. This is the biography posted on her website:
Cynthia Toussaint serves as Spokesperson at For Grace and has had Complex Regional Pain Syndrome for 26 years. She founded the organization in 2002
originally to raise awareness about the disease, and later developed
fibromyalgia as an over-lapping condition. Before becoming ill, she was an
accomplished ballerina and worked professionally as a dancer, actor and singer.

Since 1997, she has been a leading advocate for women in pain, raising
awareness through local, national and worldwide media as well as public
speaking. Toussaint championed and gave key testimony at two California Senate
hearings. The first in May 2001 was dedicated to CRPS awareness. The second in
February 2004 explored the chronic under treatment of and gender bias toward
women in pain (the impetus behind For Grace’s expanded mission.) Both of these
efforts were the first of their kind in the nation. Toussaint was the first CRPS
sufferer to be featured in the New York Times and Los Angeles Times, and on
Public Broadcasting System and National Public Radio. She is a consultant for
ABC News and PainPathways, the official magazine of the World Institute of Pain.

Also, Toussaint continues to be a leading advocate for health care
reform in California. She was instrumental in changing public opinion which led
to sweeping HMO reform legislation that was signed by Governor Gray Davis in
1999. Her focus has now shifted to bringing a single-payer, universal health
care plan to all in California which will provide a model for the rest of the

JUNE 12, 2008: on the rss feed today, i picked up another cynthia toussaint interview article. she is introduced to readers as someone suffering with crps/rsd – and then she blithely elaborates that it is called “the suicide disease.” that’s maybe an opinion best kept under wraps, eh? maybe i am dense, maybe a little bit touchy, but i really feel like it is not something to promote.

[APRIL 3, 2009: I am in no way a spokesperson on behalf of people with CRPS/RSD. The fact that it runs like a viscous leitmotif through this boggy blog? Okay. Well, maybe I do have a responsibility: the same responsibility inherent in any use of language. In my various woe-is-me-esque posts on the disorder, haven't I also exaggerated, haven't I played the pity card? Am I comfortable with the notion of someone newly diagnosed reading this entry from January, for instance, perhaps hoping for substantive information, or even feeble encouragement, and not for my rapier wit?

I entered "the suicide disease" into Google search and discovered that Trigeminal Neuralgia now holds the crown and sceptor. My opinion of Wikipedia took a dive when I read this: "TN is called 'The suicide disease.' In fact: for those who live with Trigeminal Neuralgia for more than 3 years about half commit suicide.[citation needed]"

It's a Throwdown! Who is dead? From what? And when did they know it? Mister Mustard! In the library! With a candlestick!

Damn straight a frigging citation is needed when alleging that half of those with TN (I love the clinical addition of "for more than 3 years") kill themselves. Given that many people consult the internet about their illnesses, and given that not all who do so have the necessary intellectual or emotional reserves to filter out the nonsense, this kind of thing is beyond irresponsible. As you scan down the results page of your "suicide disease" search, you can see the insidious path of the Wikipedia statement -- and I would hate to be a newly diagnosed TN patient faced with this outrageous stuff. I don't know whether TN is akin, or perhaps a subset, to CRPS, but it's likely. What is this my-disease-is-the-most-painful-ever competition about, anyway? Who'd want to "win"?]

cynthia toussaint feels compelled to promulgate this designation of "the suicide disease," and i have not run into a better example of media manipulation (except by the fringe right). by repeating her initial assertion, it takes on the status of truth, and of all the things that she ought to want known as TRUE about crps/rsd, *that* doesn't even rank! does she not think about the potential impact on someone who is newly diagnosed, or on someone who contemplates having to care for a loved one with this disease?

about herself, she writes (from her internationally known website -- the for grace foundation):

"In 1982, I was a 21-year-old ballerina when a minor ballet injury triggered the chronic pain disease, Reflex Sympathetic Dystrophy, also known as the “Suicide Disease.” For the first thirteen years of my illness, my doctors told me my physical problems were “all in my head” while the RSD spread throughout my entire body, leaving me bedridden and screaming in pain for nearly a decade – a pain that felt as if I had been doused with gasoline and lit on fire."

the allusion to gasoline and fire is also part of the Official CRPS Hyperbole. support groups tend to use flames as part of their symbology -- on tee-shirts, mugs, decals.

on the other hand, it actually does feels like being set afire sometimes -- except that i've no idea what being set afire feels like. we so want to be singular, special. the fish we caught, the mountain we climbed, the test we aced, the suffering we do...

unbelievably, ABC news did a series on "killer jobs: 10 painful professions," and used toussaint's experience as exemplar to make the case for ballet dancing. See how the suicide reference somehow magically appears!

Toussaint developed Reflex Sympathy Dystrophy, otherwise known as "suicide disease." RSD begins as pain limited to the region of the injury often leavingsomeone unable to move that part of his or her body. The pain spreads over timeto all parts of the body. Doctors are generally able to treat RSD within a year
of diagnosis. However, Toussaint was not diagnosed with RSD until she had spent
15 years in a wheelchair after her injury.
i forgot to mention -- she also moves her self-kill assertion from the narrow confines of CRPS to include all painful conditions: "Suicide is common for women in severe pain." oh, the hubris.

inclusion and diversity are grand.

a rap upon the knuckles of the beautiful and talented ms. toussaint, and a wink of approval for all her advocacy work.

April 3,2009: Sad to say, but one of the foremost authorities on CRPS also asserts that suicide is common among patients. Dr. Anthony Kirkpatrick wrote, in a complaint to the AMA, "I have personally witnessed patients with RSD/CRPS lose hope and commit suicide following denial of authorization for care by insurance carriers." The AMA, at the time, required eight concurrant objective findings for the diagnosis of CRPS, and that was what the complaint was about. He continues:

"As RSD progresses over time, especially without treatment, the syndrome tends to become more unresponsive to treatment. Hence, early diagnosis and treatment are imperative. RSD can remain localized to one region of the body indefinitely. In other cases, it spreads to large segments of the body spontaneously or by trauma leading to permanent deformities and widespread immobility of limbs. At an advanced stage of the illness, all patients develop significant psychiatric problems and narcotic dependency, and are left completely incapacitated. Some commit suicide."

In what now clearly is the voice of reason, Linda Lang wrote an article for the RSDSA newsletter, titled "The Taboo of Suicide."

Although a literature search reveals claims that CRPS/RSD patients have an extraordinarily high incidence of suicide, and a CRPS/RSD patient actually read testimony into a Subcommittee on Health in June of 2001, saying that CRPS/RSD leads to death and the leading cause of that death is suicide, there is absolutely no evidence to support these statements, in fact there are no statistics at all on CRPS/RSD and suicide. When asked about it in 2001, Dr. Robert Schwartzman said, "…there is no data on RSD and suicide. It clearly happens and is almost always attributed to other causes." He adds that out of 73,500 patients, he has had only three that he is sure did commit suicide.

Linda put out an alert through RSDSA, "asking anyone with CRPS/RSD who had seriously attempted suicide, thought about suicide, or knew of someone with the disease who had committed suicide to contact me. Within three hours I had 50 responses. The results of this very informal survey were very revealing. The most interesting to me was that there were just about an equal amount of responses from males and females. About 15% said they had made serious suicide attempts... Most of the responses were from people who said they thought about suicide with some frequency, though they doubted they would ever go through with it. Some felt that CRPS/RSD had taken away so much control from their own lives that thinking about suicide was a way of reclaiming that control, of feeling that if things ever got to be too much they could be in charge of their own body again by ending their lives. This was presented as a comforting thought, and actually helped them live more successfully with the CRPS/RSD. Others said that their religion prevented them from killing themselves. Many of those who contemplate suicide seem to already have established some kind of lifeline to help them."

So it's complicated. And disturbing. I tend to believe that having CRPS inevitably causes psychiatric illness; That is very scary and depressing, in and of itself. Suicide can be inviting in the middle of the night when nothing helps the pain and lack of sleep makes it sound like an option, an out. Love, money, friends, family, sanity -- each leaks out of the CRPS like a sieve.

One almost doesn't comprehend suicide's finality. Or care.

Open the canned peaches!

Al Swearengen: We're forming a fucking government.
A. W. Merrick: Who is?
Al Swearengen: Us! You and me! Come to me in a vision! Ya stupid bastard.

*A repost. Swearengen is timeless.

How to Gift the Gifter?

I love getting gifts. I love giving them even more, and will vex myself no end in the effort to find the right ones.

The process became difficult when a whole bunch o' family was added to my gift-giving list of birthdays and celebrations.

If you are estranged from your family and considering some form of reconciliation? Think carefully about how that sea change will impact your listmaking and shopping; Consider, too, the emotional impact should you end up buying a mess o'gift cards for your new bunch o'family.

(You will be further devastated to discover that these creatures wouldn't recognize a "thank you" card or note if it bit them on their rounded derrières.)

This confession will have been worthwhile if just one person is helped by my sad blathering example.

Of course, you will not have to endure what I have had to accept! Who knew that my long lost older brother would prove to be the world's most insightful gifter?

So, once again, I am accepting your ideas and stray notions about what might be the perfect gift for Tumbleweed's birthday on April 20.

Sunday, April 4, 2010

and in other news: OCHOA remains a big, fat TURD

When I checked my CRPS medical feeds this morning, there were TWO articles highlighted. TWO is a lot, as there are, usually, NONE.

The first is another very general piece from Medical News Today: What Is Complex Regional Pain Syndrome (CRPS)? What Causes Complex Regional Pain Syndrome?

Complex regional pain syndrome, also known as CRPS is a rare, chronic (long-term) and progressive condition characterized by severe pain, inflammation and changes in the skin. Patients commonly describe the pain as a burning sensation...

While these sorts of articles are of little use to me at this stage of the disease, I am glad that they are being written. When I was first diagnosed, the amount of misinformation and prejudice within the scientific literature was horrifying --and depressing.

I remember asking my primary care doctor if he believed that CRPS "actually existed." The question was posed as he peered at my right foot, hugely swollen, purple, colder than cold (and on fire, too).

God bless the man. He said, simply, "Yes, I do." I hung on to that "Yes, I do" for dear life.

What I appreciate about this general interest type of article is its straightforward tone. It doesn't ignore the wasted years when the medical community considered CRPS as yet another example of female hysteria:

Sigmund Freud, (1856-1939), an Austrian neurologist who founded the psychoanalytic school of psychiatry put forward the idea that CRPS might be mainly a psychological condition, caused by some unknown underlying psychological difficulty or trauma which make patients feel pain. As subsequent research has demonstrated that CRPS patients undergo real physical changes in their nervous system, this theory has been largely discarded. Other studies have shown that CRPS patients do not have a history of mental illness prior to the onset of symptoms.

Even well-informed health care professionals struggle with the relationship between mental illness and CRPS, as it is likely impossible for them to find an emotionally healthy person with advanced CRPS.

I certainly don't consider myself emotionally or mentally healthy. I do know that, as Dr. Anthony Kirkpatrick frequently says, "psychological symptoms related to CRPS are a result and not a cause of the disorder." Traumatic Neuralgias/Neuropathic pain syndromes and An overview of amplified musculoskeletal pain syndromes are two studies commonly cited.

You may wonder why this is so. Basically, in a severe case of CRPS, such as mine, the patient faces professional, financial and social losses. There is not even the hope of dying early, though I expect that I will not see my full allotment of years. Instead, there is the prospect of constant, severe pain, little sleep, less and less function, immunosuppression, and did I mention constant, severe pain? The likelihood of ending up alone -- if not completely, then essentially?

I tend to consider the development of anxiety and depression a healthy response to an insane situation. Dr. Kirkpatrick prefaces the Clinical Practice Guidelines for CRPS this way:

If undiagnosed and untreated, RSD / CRPS can spread to all extremities, making the rehabilitation process a much more difficult one. If diagnosed early, physicians can use mobilization of the affected extremity (physical therapy) and sympathetic nerve blocks to cure or mitigate the disease. If untreated, RSD / CRPS can become extremely expensive due to permanent deformities and chronic pain. There are no studies showing that RSD / CRPS affects the patient's life span. The potential exists for long-term financial consequences. At an advanced state of the illness, patients may have significant psychosocial and psychiatric problems, they may have dependency on narcotics and may be completely incapacitated by the disease. The treatment of patients with advanced RSD is a challenging and time-consuming task.

It makes you crazy, simply and accurately put.

People harboring nutty tendencies before falling ill are only going to end up magnifying their wackiness under the unkind influence of CRPS.

And yes, it is discouraging to know that you are one of those patients... And how low one's aspirations have sunk when not being one of those patients becomes a goal, an actual freaking goal.

There is help out there in the form of pain counselors, stress management, training in biofeedback/self-hypnosis, relaxation exercises and pharmacological treatment of depression and anxiety. To be honest? None of these things (passed off by terms such as Coping Skills and Psychosocial Modalities) will help in the least until you squash That Rat Bastard Known as Denial.

Squashing That Rat Bastard Known as Denial takes firm intent and time. I wasn't fully convinced I even had CRPS until it had spread to 3 of my 4 extremities. It took even longer for me to accept that there was no cure and that most treatments are futile (when I looked to them for cures!).

The various modalities and treatments suddenly become much more efficacious when expectations are trimmed to fit reality.

Speaking of reality, I started out with two results from my medical feeds, and then got bogged down in the dangerous generalities of the article for non-specialists. The second result was published in the journal Clinical Neurophysiology [2010, March 30, 2010] and bears this snazzy title: A search for activation of C nociceptors by sympathetic fibers in complex regional pain syndrome.

I so appreciate the labor behind this article. The promulgation of the sympathetic nervous system as key to all-things-CRPS drives me... well, nuts.

Not whacked out nuts but frustrated nuts.

One of the major reasons the name of the disorder was changed from Reflex Sympathetic Dystrophy to Complex Regional Pain Syndrome (Types 1 and 2) was, precisely, that the sympathetically-maintained explanation for the genesis of CRPS and the maintenance of its pain -- was not supported by science.And science is still consistently failing to find support for this long-held but never proved theory. This is the abstract for the article about the study of sympathetic nerve fibers:

OBJECTIVE: Although the term 'reflex sympathetic dystrophy' has been replaced by 'complex regional pain syndrome' (CRPS) type I, there remains a widespread presumption that the sympathetic nervous system is actively involved in mediating chronic neuropathic pain ["sympathetically maintained pain" (SMP)], even in the absence of detectable neuropathophysiology. METHODS: We have used microneurography to evaluate possible electrophysiological interactions in 24 patients diagnosed with CRPS I (n=13), or CRPS II (n=11) by simultaneously recording from single identified sympathetic efferent fibers and C nociceptors, while provoking sympathetic neural discharges in cutaneous nerves. RESULTS: We assessed potential effects of sympathetic activity upon 35 polymodal nociceptors and 19 mechano-insensitive nociceptors, recorded in CRPS I (26 nociceptors) and CRPS II patients (28 nociceptors). No evidence of activation of nociceptors related to sympathetic discharge was found, although nociceptors in six CRPS II patients exhibited unrelated spontaneous pathological nerve impulse activity. CONCLUSIONS: We conclude that activation of nociceptors by sympathetic efferent discharges is not a cardinal pathogenic event in either CRPS I or CRPS II patients. SIGNIFICANCE: This study shows that sympathetic-nociceptor interactions, if they exist in patients communicating chronic neuropathic pain, must be the exception.

For some reason, physicians and therapists never seem to take my word for it. Maybe they will listen to The Gang of M. Campero, H. Bostock, and the inimitable T.K. Baumann -- all from the Departamento de Neurología, Clínica Alemana-Universidad del Desarrollo, Santiago, Chile

Oh, and one J.L. Ochoa.

Uh-oh. You may recall that I called a certain Dr. Jose Ochoa a big, fat turd. He bears part of the responsibility for the pollution of the generalist literature out there, just the sort of reading that someone newly diagnosed is likely to undertake. Feeding off of unhappiness like a plump-to-bursting bloodsucking tick, this Ochoa bankrolled a comfortable life with monies from the provision of pimped-out expert testimony -- his general message being that CRPS does not exist. Happily, his opinions have been disallowed or stricken as unscientific in at least three states. I haven't seen a serious scientific notation of his "work" in a good while now. His publications have tended toward the editorial (or letters to the editors), anyway.

In summation, that Dr. Jose L. Ochoa remains a big, fat Turd; the J.L. Ochoa doing actual work, study, and evaluation? He is a Prince, a Peach, a Pear.