Saturday, January 31, 2009

T. Coraghessan Boyle

Hooray! There is a new T. C. Boyle out and it is featured on the cover of this weekend's N.Y. Times Sunday Book Review. The Women, writes reviewer Joanna Scott, "is a mesmerizing story of women who invest everything, at great risk, in that mysterious 'bank of feeling' named Frank Lloyd Wright."

I don't recall any of Boyle's previous works as being of any great length -- in fact, I like his *short* fictions: this is 451 pages, A Real Book.

Scott charges Boyle with "writing his own fascinating, unpredictable, alternately hilarious and terrifying fictional history of utopian longing in America." She says utopian longing, I say fanaticism -- but most definitely is it all American. If one were to correctly and politely follow T.C. Boyle's road signs, one would say that it is all about addiction, or as his Dr. John Harvey Kellogg might put it, "auto-intoxication."

A dreary, tedious melodrama -- that's what the first NYT book reviewer said of The Women. Michiko Kakutani almost makes it sound like Boyle has been creatively hijacked by the likes of Kellogg and sexologist Kinsey. She does not seem to "get" that The Road to Wellville and The Inner Circle are not in the least qualified to be reductive, plodding historical fictions. I don't quite understand her theory that the Wagnerian quality of Wright's life overshadowed and outspoke, in a sense, T.C. Boyle's verbal abilities. [I believe T.C. would have had an inkling were that the case.]

I started to count the number of times Kakutani used the unlikely adjective "cheesy," but thought better of it after the first repetition. Two cheesies and the woman is automatically not my good gal pal. Am I a tad defensive of Boyle? Yes, and I know why, and I ain't gonna say, because it is kind of embarrassing.

And so I can't wait to read The Women -- whether it be a cheesy story of no appreciable depth or a sprightly and unique tale of utopian longing. It's bound to be, at least, *quirky* (and American) as all get out.

N.B. Hmmm! As I cleaned up this very messy entry that was initially made in the middle of excitement, and the night, I cruised through some old book reviews. Guess who did one of the NYT reviews for The Inner Circle? I will give you a big old honking hint. It begins:
Though author and subject are well matched, T. C. Boyle's novel about the sexologist Alfred C. Kinsey is a flat and flabby production. Michiko Kakutani, come on down!

I was hoping to avoid further flatus and, thank goodness, Wikipedia has come to my rescue, writing this about Ms. Kakutani:

Salman Rushdie has called her "a weird woman who seems to feel the need
to alternately praise and spank." In a June 2005 interview with Rolling Stone
magazine, author Norman Mailer criticized Kakutani as a "one-woman kamikaze"
(Kakutani is of Japanese descent) who "disdains white male authors" and
deliberately "bring(s) out your review two weeks in advance of publication. She
trashes it just to hurt sales and embarrass the author." Mailer also said that
New York Times editors were "terrified" of Kakutani, and "can't fire her"
because she's "a token," "an Asiatic, a feminist." Moreover, in recent years,
Kakutani's particularly harsh reviews of books by famous authors (e.g., Updike,
The Widows of Eastwick) are followed by (usually milder or openly positive)
reviews of the same titles by other NYT reviewers.

On July 19, 2007, The New York Times published a pre-release story
written by Kakutani about Harry Potter and the Deathly Hallows. An account of
the ensuing controversy, including the critical comments of some Harry Potter
fans, can be found on the Times Public Editor's blog.

Kakutani was criticized for her alleged overuse of the word limn in
her reviews. She was also parodied in the essay "I Am Michiko Kakutani" by one
of her former classmates, Colin McEnroe.

I haven't had such a *pure* laugh in a while -- it was the "limn" comment that did it, as I was sure that The Great American Writer With Whom I Once Lived would have taken that honor...

Thursday, January 29, 2009

CRPS Clinical Trials is a great resource that I try to periodically peruse for hip and happening research activity around CRPS/RSD. The following trials are recruiting or are on the verge of recruitment.

There has been a flurry of visitation to this blog as people google and otherwise search for information about Laura Beckett, who underwent the ketamine coma protocol in Germany and has unfortunately encountered problems due to infection with MRSA -- something far too common these days in ICUs (and hospitals, in general) the world over. Please note Clinical Trial #6 below that is investigating outpatient delivery of intravenous ketamine -- there is considerable misinformation being passed around about treatment with ketamine. It has NOT been banned in the United States -- on the contrary, studies and treatments are ongoing, just not that which employs the 5-7 day coma. And *that* is NOT banned, either -- it is simply subject to the FDA ruling which does not allow coma treatments that last longer than 2 days.

1 Recruiting Autonomic Dysfunction and Spinal Cord Stimulation in Complex Regional Pain Syndrome
Condition: Complex Regional Pain Syndrome
Interventions: Device: Spinal Cord Stimulator;
Other: CRPS patients under treatment other than spinal cord stimulator

2 Recruiting Effect of Delta-9-Tetrahydrocannabinol on the Prevention of Chronic Pain in Patients With Acute CRPS (ETIC-Study)
Conditions: Complex Regional Pain Syndromes; CRPS
Intervention: Drug: Delta9-Tetrahydrocannabinol

3 Not yet recruiting Graded Exposure (GEXP) in Vivo Versus Physiotherapy in Complex Regional Pain Syndrome Type I (CRPS-I)
Condition: Complex Regional Pain Syndrome Type I
Interventions: Behavioral: Graded exposure in vivo; Behavioral: Physiotherapy

4 Recruiting Safety and Efficacy Study of Ethosuximide for the Treatment of Complex Regional Pain Syndrome (CRPS) Type I Condition: Complex Regional Pain Syndrome, Type I
Interventions: Drug: Placebo; Drug: Ethosuximide

5 Not yet recruiting Pain Exposure Physical Therapy (PEPT) Versus CBO in Patients With Complex Regional Pain Syndrome Type I (CRPS-1)
Condition: Complex Regional Pain Syndrome, Type I
Interventions: Procedure: PEPT;
Procedure: CBO standard

6 Recruiting Double Blind Placebo Controlled Study of Outpatient Intravenous Ketamine for the Treatment of CRPS
Condition: Complex Regional Pain Syndrome
Interventions: Drug: Ketamine; Other: IV NSS; Other: Normal Saline

7 Recruiting Association Between Focal Dystonia and Complex Regional Pain Syndrome Conditions: Focal Dystonia; Peripheral Nervous System Disease

8 Not yet recruiting The Effect of Transcranial Direct Current Stimulation (t-DCS) On the P300 Component of Event-Related Potentials in Patients With Chronic Neuropathic Pain Due To CRPS or Diabetic Neuropathy
Conditions: Diabetic Neuropathies; Complex Regional Pain Syndrome Type II
Intervention: Device: TDCS/sham procedure on five consecutive days

9 Recruiting A Study of the Effect of Lenalidamide on Complex Regional Pain Syndrome Type 1 Condition: Complex Regional Pain Syndrome, Type 1
Intervention: Drug: Lenalidamide

10 Recruiting Evoked Fields After Median and Ulnar Stimulation
Condition: Complex Regional Pain Syndromes
Intervention: Procedure: Evoked fields before and after a local block (Xylocaine)

11 Recruiting The Efficacy of Motor Cortex Stimulation for Pain Control
Conditions: Neuropathic Pain; Phantom Limb Pain; Stump Pain; Brachial Plexus Avulsion; Deafferentation Pain; Facial Pain; Complex Regional Pain Syndrome
Intervention: Device: motor cortex stimulation

12 Recruiting Neurotropin to Treat Chronic Neuropathic Pain
Conditions: Causalgia; Reflex Sympathetic Dystrophy
Intervention: Drug: Neurotropin

13 Recruiting Evaluation and Diagnosis of People With Pain and Fatigue Syndromes
Conditions: Fatigue; Fibromyalgia; Pain; Complex Regional Pain Syndrome; Reflex Sympathetic Dystrophy

14 Recruiting Regional Anesthesia Military Battlefield Pain Outcomes Study
Conditions: Anxiety Disorders; Complex Regional Pain Syndrome Type II; Depressive Disorders; Post-Traumatic Stress Disorder; Substance Abuse
Intervention: Procedure: Regional Anesthesia

15 Recruiting Susceptibility to Chronic Post-Traumatic Extremity Pain
Condition: Chronic Pain

NOT APPLICABLE 16 Recruiting Effect of an Educational Intervention on Cardiac Patients' Participation Rate in Cardiac Rehabilitation Programs
Condition: Coronary Artery Disease
Intervention: Behavioral: Increasing awareness to importance and availability of CRP

NOT APPLICABLE 17 Recruiting Growth Hormone Secretagogue MK-677 Therapy Effect on IGF-1 Levels in CKD and ESRD Patients Conditions: Chronic Kidney Disease; End Stage Renal Disease
Intervention: Drug: MK-677

18 Recruiting Cerebrospinal Fluid Repository
Conditions: Amyotrophic Lateral Sclerosis; Cerebrospinal Fluid; Neurodegenerative Disease; Motor Neuron Disease

Wednesday, January 28, 2009

Bayeux Tapestry

The Museum of Reading provides panel by panel, scene by scene, "narration" of a Victorian replica of the embroidery.

The Wikipedia entry notes several Mysteries of the Tapestry, which are interesting. Any insights or ideas?:

There is a panel with what appears to be a clergyman touching or possibly
striking a woman's face. No one knows the meaning of the inscription above this
scene (ubi unus clericus et Ælfgyva, "where [we see] a certain cleric and
Ælfgifu," a woman's name, although some authorities have claimed otherwise).
There are two naked male figures in the border below this figure; the one
directly below the figure is squatting and displaying prominent genitalia, a
scene that was frequently censored in former reproductions. Historians speculate
that it may represent a well known scandal of the day that needed no explanation
(Setton 125).

At least two panels of the tapestry are missing, perhaps
even another 6.4 m (7 yards) worth. This missing area would probably include
William’s coronation.

The identity of Harold II of England in the
vignette depicting his death is disputed. Some recent historians disagree with
the traditional view that Harold II is the figure struck in the eye with an
arrow. The view that it is Harold is supported by the fact that the words Harold
Rex (King Harold) appear right above the figure's head. However, the arrow may
have been a later addition following a period of repair. Evidence of this can be
found in a comparison with engravings of the tapestry in 1729 by Bernard de
Montfaucon, in which the arrow is absent. A figure is slain with a sword in the
subsequent plate and the phrase above the figure refers to Harold's death
(Interfectus est, "he is slain"). This would appear to be more consistent with
the labeling used elsewhere in the work. However, needle holes in the linen
suggest that, at one time, this second figure was also shown to have had an
arrow in his eye. It was common medieval iconography that a perjurer was to die
with a weapon through the eye. So, the tapestry might be said to emphasize
William's rightful claim to the throne by depicting Harold as an oath breaker.
Whether he actually died in this way remains a mystery and is much
debated[citation needed].

Flush my line, SweetCheeks...

I am thrilled to report, mes amis, that my PICC line was pulled yesterday! It was quite the treat not to have to get up in the middle of the night to have Fred flush my line.

I mean, really, don't you think a girl ought to be able to mean something totally non-medical by the phrase "flush my line"? Ought that not be a throaty and suggestive invitation -- "C'mon, baby, come here, SweetCheeks... and flush my line..." ?

And I ain't referencing saline or heparin, either, darling.

Monday, January 26, 2009

Aretha's Hat

I heard about this on the radio this morning and then ran into it on another blog -- there is a movement afoot to posit Aretha Franklin's inauguration bonnet on other, more unadorned, heads.

It is an incredible, wonderful, magical hat. And it is turning up everywhere!
*doctored by Johnny M.

Laura Beckett

[family photo of Laura Beckett and daughter]
Roughly two years ago, I was ready to fight.

I was looking into going to Germany for the ketamine coma treatment that has had such great -- but poorly understood -- results in people with refractory CRPS. I have CRPS/RSD in all of my limbs and now, in my face. Blah blah and yadda yadda!

At the same time, recognizing some tough financial realities and the not-so-minor detail that I have a lot of what is charmingly designated by the medicos as "co-morbidities," my neurologist was urging me to look into getting a pain pump. I had wanted a spinal cord stimulator earlier on but the spread of the disease made that a not so effective option and he was having a hard time handling my pain.

Isn't that a riot?

My doctors have a hard time handling my pain. There are days, though this is not one of them, that I resent that. With my neurologist, I try to walk a fine line. There is significant dissonance in his urgings that I get one implant or the other -- because he would always preface this desire with this slightly jarring statement: "Of course, with you? If you got an infection, you would be dead before you could get to the Emergency Room." [Given what ER-based blogs reveal, I think the ER/ED might be a waste of time, anyway.]

When I first investigated the ketamine coma protocol, it cost around $20,000. The cost has at least tripled -- probably due to inflation and the increased complexity of the care as the program has evolved. But, in my opinion (and I very much respect those on the other side of the argument), the ketamine coma is the best thing, indeed, the only thing, out there that comes close to a cure. It is not permitted in the states, not because of the drug but because of the length of time patients spend in coma. Indeed, "awake" ketamine infusion therapy is gaining in popularity as a treatment.

So why are my hopes in the past tense? I began to feel ill in ways that did not make sense -- although I did, for the longest time, attribute every symptom to CRPS and just thought that this freakishly weird disease was just getting weirder. Anyway -- eventually, we discovered that I have infected joint prostheses, as well as osteomyelitis. I have had three major surgeries since August 2008, and am facing another in the coming weeks. I have had my artificial shoulders removed and am not promised new ones. My left hip and my lower spine are suspicious for infection, too. The pathogen(s) involved have not grown in the lab -- although there is no doubt that there is massive infection (According to my surgeon, when he bored into the left humerus, it suddenly "exploded," spewing pus all over the place, even sending some up into my neck. Yummy details!).

All of my plans and hopes for either the ketamine coma (I thought my investment portfolio was sitting pretty!) or the pain pump are over. No one is going to put me under for any period of time (Did I not mention ending up on a ventilator for 5 days after one of the recent surgeries?) or put another foreign body into this body.

Oh, and I have MRSA.

Today I have a major appointment with the doctor I respect the most, whose opinion I highly value. In essence, when I am unsure but he is not? I will substitute his assurance for my waffling will. He has somehow pretty much predicted the outcome of each leg of the journey thus far. "I don't think we are looking at a positive outcome."

When I face a week like this one -- The Boutiqueur today, Infectious Disease tomorrow and Wednesday, Dr. PainDude Thursday -- I get fairly antsy. I know it will be physically hard and very painful but more than that, I have to prepare for getting emotionally jerked around.

So I clean my house like a rabid woman, I cook at 4 am, I attend to a myriad of details because, all of a sudden, details alone matter.

This morning -- after finally getting my Baked Cayenne Cheese Grits to set -- I log on to find that the most recent visitor to elle est belle la seine la seine elle est belle arrived via a search for "karl beckett crps." It is not surprising that this happened -- I mean, I may mention Karl Marx from time to time, Samuel Beckett is one of my literary heroes, and CRPS? Well, I might speak of it occasionally!

My heart sank when I followed this person's lead and read the story about the very real Karl Beckett, the ketamine coma, and CRPS.

His wife went to Germany for the treatment, but on the second day of the coma, developed a terrible staph infection -- MRSA -- and is now on a vent and has lost the use of her legs and arms. Their money has run out and he has lost his job.

Just to get her home via air ambulance, he needs at least $71,000.

Please read their story and, if you are so led, a trust fund has been set up:
c/o TD Bank NS, 129 S.Blackhorse Pike Runnemede, NJ 08078

Here's another article about the situation: N.J. woman trapped in German hospital.

*Edit: Reading the sometimes ridiculous comments that follow the articles can be upsetting to those of us with CRPS. Dr. Schwartzman is wrongly being smeared -- everything I know of the man tells me that he is a selfless, tireless worker on behalf of those with this stupid disease. Laura Beckett's family is, of course, upset and highly emotional but it is unfortunate that Dr. S has become the sacrificial lamb to their tragedy.

As for the ketamine coma therapy itself? The main reason it is not approved for use in the United States is the *length* of the coma, not the use of ketamine. I believe that the FDA will not approve coma treatments that last more than two days. Ketamine is being used as an accepted treatment in the U.S. for CRPS, but only as a short "infusion" while the patient is awake.

About the fur flying over the issue of ketamine being a "street drug," well, get a grip, people! Ketamine is used as anesthesia for humans in ERs and ORs every day just as, yes, it is used illicitly as Special K [on scuzzy street corners and in dank, dark, evil bars] every day, too. It often happens that there is a lag time in the general understanding of how a drug that is abused on the street can have an extant legitimate medical use -- I encountered this when I began using methadone as my long-acting pain reliever. Folks who weren't aware of its profile as a cheap and effective pain reliever preferred to conclude that I was a heroin addict. Luckily, I have long experience in, as put by my darling brother, the Grader Boob, "making like a duck, and letting it roll off my back."

In their present circumstances, the Becketts can hardly be as forgiving. The overarching issue of whether the German doctors screened Laura for MRSA is something of a non-issue. She may have acquired it there; She may have been a carrier -- whatever, MRSA, like "stuff," HAPPENS. There is no relief to be had by playing the blame game.

This poor family is surely at wits' end. If you can, consider donating or bringing heat to their legislators, or publicizing Laura's plight. Word is spreading and I am optimistic that help is on the way -- but from Laura's vantage point, it must feel like forever.

Oh, the statement by the German doctors that this is the first complication in the ketamine coma treatments? Ridiculous. It is well known that pneumonia is not at all uncommon in the course of the week spent on a ventilator -- in fact, it happens fairly frequently, but my understanding is that the ICU nurses are good at respiratory hygiene, keep the patients turned and well-suctioned, etc. The most frequent consistent negative that I've read about is the one anticipated -- the difficult transition from ketamine coma to a normal awakened state (generalized weakness, hallucinations, trouble eating, etc.). All in all, considering the extreme nature of the treatment, I think things have gone remarkably well. Do I think it is risky? Of course, it is risky. Who has ever said otherwise?

Considering how few treatments there are for CRPS, I hope that the community of "sufferers" can refrain from being inflammatory while working to help the Becketts. Let's keep them the focus and not make this specific set of circumstances (which we really do not know, anyway) a referendum on the coma protocol.

Sunday, January 25, 2009

Split Infinitives

Yesterday was my mother's birthday, and mine. Once upon a time, I was her 29th birthday present, even if I was induced and hastened with pitocin. She has great stories about my birth and my brother Grader Boob's arrival -- but I've never heard a peep about my eldest brother's début, the child she so adored. He no longer uses his given names. He asks to be known as TW, for Tumbleweed.

I will have to find the cover to Dylan's Nashville Skyline, because there is a moment, truly frozen in time, when he adopted that same stance, guitar slung over his shoulder, hat tipped back, gunny sack at his feet. He stood next to a basketball goal we had at the end of our driveway and was looking out toward me and Grader Boob -- we were playing softball in the back yard.

I just happened to turn and look. I was too young and stupid to understand what I saw. But I did *see* him. He was old, so young, and sad, so sad. He had traveled cross country in one of his attempts to find our mother, to draw her to him in his need. He would go to her parents' home, hoping she would come back to the States for him. But she was busy with Litter Number Two and her new husband -- a lovely man that I wish TW had met. Necip would have been very kind to him, would have given him the world. Necip died a few years ago. He was a wonderful person. He would have wrapped TW in love and safety, as he tried to do for me. As he *did* for me!

The forever mystery is: What happened to all of her adoration? There are missing passages to the story that it seems I will never know. When I reunited with her, she was shocked to learn that TW was not with us, that he had been gone for many years. She broke at the news. It seemed to deepen her love for him -- he was all she could think about, all she would speak of. Yet, when I found out he was alive through a moment of indiscretion on the part of my half-sister, it was made clear to me that she wanted nothing to do with him. What happened?

You are probably rolling your eyes and thinking "Why not just ask?" I don't know the answer to that; I don't know why I cannot just ask.

As Nancy, the aunt, noted a few weeks back, what in the world does TW, the Elder, have to apologize for? His mother left him, his father never searched for him when he ran away from home -- in fact, his father took the family and left the country! He told me and Grader Boob that TW would be joining us in three months. Three months came, three months went.

I will never forget the confrontation -- Grader Boob, in the midst of the growth spurt that would eventually make him 6'4", in front of the Father, who sneeringly attested that he had no idea where TW was -- and the fist, rising, rising. It's imprinted in my brain, burned into the grey matter, dancing along neural pathways.

I cannot escape my own guilt. I searched for him -- for years -- but did not find him. Yet, when I was told where he was, he wasn't hiding. I don't understand why my efforts failed. I *did* make contact with someone who knew him -- my first semester of grad school at UC-B -- but it never went further than this person who responded to one of my ads. If TW was hiding, he hid out in the open.

[That was a long and nervous week, that week of fielding this woman's phone calls in response to one of my newspaper ads. She definitely knew him, said he was in Oregon "overseeing some property," and that she would have him call me in the next few days. I canceled all my classes, skipped my own seminars, took the phone off the hook whenever I had to run to the bathroom. I prayed and prayed, I was so sure that this was it -- that I had found him.]

TW had me tell Grader Boob that he was so sorry, that he wished things had turned out differently, that if ever he wanted to talk, he would be there, ready. Hear the echo of Nancy's rage -- what does he have to apologize for? We all owe him a debt that is impossible to quantify, a debt that should be recognized and paid down, crime by crime. I owe him. And if Grader Boob would get his head out of his ass, he would see that TW did what he had to do, and extend him the graciousness and understanding he deserves. Again, I just don't understand. Grader Boob is the sweetest person in the world -- but hard as a rock in these instances. Why? [I *have* asked! The answer is a terse "he could have found us anytime." Maybe, maybe not -- and might he not also have been somewhat deterred by past experiences with the family unit?]

TW was homeless and eating out of garbage cans when he was 15 years old. He sent a love letter to his mother, far away then, in Ankara, saying "come to me and I will make you beautiful with mine eyes." (Okay, so he was well read.) He lived in the drug culture, was shot, fathered a child with a porn actress, a child that he really doesn't know (but I heard his pride through the telephone line), living with her mother now in Bangkok. Somewhere in there, he found himself, fell in love with the Grand Canyon, knew it intimately, and became an expedition guide. "In order to feed the cats," he works as a bookie. When we found each other, late in 2007, he had broken his shoulder after falling on an icy sidewalk, and lost (or quit, I am not sure which) his job in Vegas. He painted houses in Lake Tahoe over the summer, and recently was part of a start up betting operation... but has been "replaced." He hints that he is ill but will not tell me anything specific. He is extraordinarily kind, dedicated to what he believes is right, and funny as hell. We were talking about the health history of the people to whom we are related, because his daughter had some questions about the prevalence of breast cancer and diabetes, and I asked him, "How are your eyes?" -- because our grandfather went blind from glaucoma, which I also have. Without missing a beat, TW answered: "My eyes? Small, dark, and suspiciously beady."

My brother Grader Boob was born in a London cab. TW, age 4, was in the back seat with her and when they arrived at the hospital, he attempted to commandeer the taxi, refusing to let anyone out until the new addition was adequately explained. "He was not here when we got in the car..." is how his spotless logic worked.

But nary a word about TW's birth. "I know he was born, because -- after all these years of studied neglect -- he is still here" is how my spotless logic goes.

Somehow the accretions of the past year or so made celebrating my birthday impossible. No, that is not true. Not impossible. More like obscene. I was in a great deal of pain, to the point where making it to the bathroom and washing up was almost too much. It hurt so bad that I couldn't find sleep until 4 am this morning, and then was up again at 6 am -- but happier, because my birth day had passed. My shoulder feels close to exploding, but I forced myself to clean the house -- a clean start to this new age of mine. I needed to do something nice for The Fredster, who was so understanding of my depression yesterday.

The mother had her daughter email me, belatedly, with the familiar message that she would get "something in the mail to me tomorrow." I so wanted to respond "don't bother."

But I want her to bother. I want her to very much bother.

I want to split her infinitives.