Keep the Faith

Every time I encounter a good blog entry about CRPS/RSD, I try to link to it -- and offer a huge "thank you" to the author, because such things are few and far between. This morning, my Medworm subscription hit upon the following:

http://rlbatesmd.blogspot.com/2008/09/complex-regional-pain-syndrome.html --

over at Suture for a Living. The intro to this blog sketches the broad lines of this blogger's interests:

I am a plastic surgeon in Little Rock, AR. I may "suture for a living", but I "live to sew". When I can, I sew. These days most of my sewing is piecing quilts. I love the patterns and interplay of the fabric color. I would like to explore writing about medical/surgical topics as well as sewing/quilting topics. I will do my best to make sure both are represented accurately as I share with both colleagues and the general public.

Such a desire, such an approach, is appealing to me, especially, as most of my professional "specialty" deals/dealt with the interplay between the plastic and the written arts, and my interest peaks whenever I encounter a unifying vision of plural modes of representation.

Lord, how easy it is to lapse into Ivory Tower Speak (yet another of my foreign languages).

So, this morning I am grateful to the incredible technology that scans the world of electronic communications for things that are of interest to me, and possibly to me, alone. I am grateful for the chance to connect, however artificially, with someone of a completely different ilk who nonetheless has transected the thread of my thoughts... I don't get excited anymore about the likelihood of effecting any real progress in the diagnosis and treatment of CRPS/RSD through internet "publicity" -- I am too jaded, too much in pain, too depressed, too disabled.

I hate that word -- disabled.

Yesterday, after coming home from the weekly Infectious Disease appointment (the PICC line comes out next week! Hooray!), I was in bad shape. Riding in the car is difficult, and my pain level was hovering around 8 (grrrr -- what a useless thing, the pain scale). However, I had made noises the evening before about my firm conviction to clean the house a bit, and so, after finishing the first two infusions of the day, I gathered my weapons of war and began vacuuming.

Okay... I am used to Wheelchair Vacuuming, an Olympic endeavor, an Olympic sport. But now it is complicated by a useless right arm and a *&^%#@ hurting left shoulder. The nurse in the ID office had set off a flare of pain in my left hand because she had been unable to get any blood through the PICC line and had been forced to stick me several times in that hand. Not her fault, just an unfortunate thing when there are needle sticks in an area already involved with CRPS.

Given the circumstances, I chose to use the Power Chair Push-me-Pull-you technique -- basically accomplishing the task by combining the thrusts of the vacuum with the thrusts of my ruby-red chariot.

And somewhere between sucking up the huge pile of carpet cleaner that I had placed over Sammy's last deposit (please see: Potpourri -- Olla Podrida) and the gymnastics of getting into the nooks and crannies of the dining room, I went mental.

Poor Fred. When I go mental, I strive to share the warm and fuzzy experience with my beloved. Poor Fred.

Suddenly I was rolling myself in circles around the living room, sounding off about the state of the puked-upon carpet, about the total invasion of the cat creatures. (Of course, this problem only exists in one tiny part of Marlinspike Hall in the Tête de Hergé -- the rest of this opulent manor is spotless and petless, crucial since we house several museum quality painting and sculpture exhibits, as well as an extensive decorative art collection of baroque furniture -- mostly cabinets, commodes, and French stools.) Fred stretched out on the nearest chaise longue, steeling himself against volley upon volley of invective.

Let's just say this: Promises were made; Christmas gifts were agreed upon. And yes, the removal of carpet and the refinishing of the medieval stone and early 20th century wood floors were part of the negotiations. So it goes when I get mental.

I worked on for several hours, and ended up needing help getting into bed -- always a depressing thing, not to be able to do even that. Plus, I left some of the cleaning undone.

Anyway, my hope was that a bit of rest would conquer the pain and difficulty moving, so that I could redeem myself by being a fun partner for the remainder of the day. Instead, Fred ended up having to nuke a frozen dinner for me (losing points), cut up the pale but purportedly "blackened" slab of purported chicken (winning back what he had lost), and take on the feline's evening meal, as well. Poor Fred. Yes, it is a refrain, and one you may as well learn.

When my acronyms are under control -- from the SLE to the AVN, passing by the AI, and back to the CRPS/RSD -- I defy the meaning and intent of the label disabled. Doing anything without assistance and in my own time is wondrous. That life has been unavailable to me since late last year. Everytime I try to pretend this is not so? I pay, and everyone who loves me pays.

So sometimes the best I can do is celebrate the stray blog that -- in the best of all possible worlds -- might make a difference. Thank goodness for this quilting, sewing, needle-wielding plastic surgeon who decided to disseminate some information about one of the more obscure neurological disorders in existence! Somewhere there is a woman who will be able to joyously and painlessly vacuum her living room, who will pirouette as she cleans the toilet, who will dash from one satisfying professional experience to another, from one colloquium in the Rainbow-Ribboned Multicultural Center to the next in Stuffy Whosits Library.

I just gotta keep the faith.

Ar!

Potpourri -- Olla Podrida

Pot pourri (rotten pot). Fitting that the name for a beautifully arranged bowl yielding questionable scents derives from the Spanish designation for olla podrida -- pork&beans. True, the Spanish being Spanish, said pork&beans stew is subject to the rarefying whims of the creative cook, a clay pot, and a long cooking time, and becomes a satisfying culinary hodgepodge.

I learned from reading the entry for potpourri in Wikipedia that, "(w)hen mixed, you need to enclose the mixture in a bottle or jar, and let it sit for a few weeks. Towards the middle of the weeks, the soon to be potpourri may smell rotten. If you wait a little while longer, it will start to smell better, so don't get discouraged or disappointed." (I particularly relish, and appreciate, the encouragement to fend off the ravages of clinical depression.)

And so it goes that necrotic pots and gentrified stinkiness head up this blog entry -- the result of my search for an excuse that might unify my disjointed thoughts.

There is this notion in linguistics and lit crit -- about the process of voiding words, terms, implications, insinuations. It is recuperative, the voiding of terms, the emptying of cloying traditional meanings. (This is how, according to the insightful inhabitants of the Ivory Tower, the signifier nigger is being... reclaimed and rehabilitated. Isn't all this pseudo-intellectual crap grand?)


I am going to take a break -- now that I have obliterated the notion of tastefully deployed, pretty and soothing potpourri, this message square becomes clean space for the odds-and-ends of my poor brain and its pitiful, pitiable expressions (of life).


Ar! Harrumph!


If you knew me? You'd be laughing, too. As it is, you probably have shivers and goosebumps. Anyway... I am going to wash up, change my antibiotic i.v. bottle, and maybe try to sleep some. After, I will be potpourri-ing all over the damned place.

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

I'm b-a-a-a-c-k. In the interim quarter of an inch, the HVAC repairman has come and gone, as has, amazingly, most of the crankiness in the house. Three days of unconditioned air almost robbed us of civility. La Belle Bianca Castafiore took off, in fact, after the first stuffy night, checking into the Hilton nearest Marlinspike Hall in the Tête de Hergé.

If I had to put a dollar value on the time between then, and now... I might say $637.

About a week ago, I dropped my laptop on my decrepit right foot. It was already reddish blue and tremendously swollen due to CRPS. There was so much bleeding under the skin that the foot fairly throbbed due to the pressure. Finally, last night, it... well. It burst. Now sealed off again by its own internal pressures, the pain is hard to take. Initially, the schtuff was clear but quickly became yellow with spots of blood. Simply Sera? Sounds like the flavor-of-the-day for some knock-off lipstick. I've cleaned it several times but, beyond that, am clueless as to what to do. I see the ID Physician's Assistant tomorrow and maybe she'll entertain a few questions about this wounded hoof.

She's extremely nice, knowledgeable, and -- best of all -- approachable. She reviews my labs every week, and keeps me in the loop without alarming me overly much. Right now, we are both anxious about my still elevated white count -- how can that be, given twice daily infusions of vancomycin and cefepine? She said last week that she'd recheck the cultures for TB and fungi. Oh, yeah, low grade fevers are back, too. As for areas of increased pain, this foot is now vying for attention with my left shoulder.

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

Sam-I-Am would be cruising for a bruising were I the type of pet owner that swats her animals. You know the theory that "children" can best be manipulated into good behavior by the creative use of each child's particular type of currency? For instance, the tween who values the availability of video games can be successfully led to complete his English essay on the symbolism of the whale in Moby Dick by their judicious allowance or disallowance. That's a crappy example, but it's all that comes to mind. Hmmm. Well, using myself as a tweeny example, restricting my access to tennis courts might have been pretty darned influential in molding my behavior...

Ah, but back to Sammy. HE has ME backed into a corner, à la B. F. Skinner. When he decides that it is time for food to be offered, and when I am in the least resistant to his playful kitty pantomimes, this feline shyster turns to what amounts to nuclear warfare: first, he threatens to pee; second, he pees; third (after I cave in and feed him), he throws up. The first and second instances occur, of course, in an inappropriate spot -- the third, almost invariably on my bedding, or, on a creative night, carefully divided between my favorite quilt and the off-white carpet.

Tonight? He treated me to the trifecta. He decided he wanted to eat an hour early. I decided to ignore him. I rolled into the living room to talk to Fred about something, Sammy tailing me. While we were talking, I became uncannily aware of the Grey Ghost, perched on the sofa, assuming the well-known Pee Position, and fixing me in a cold, cold glare.

"No, Sammy! No, Poopy Head!" I yelled. (Poopy Head is a rarely used term of endearment.) Normally, I would swing away, arms flailing -- but lacking one shoulder, and the other being locked in a severe pain mode, all that happened was some ugly upper body jerking. Whatever, it was enough to shock him into momentary anuria. He beat a quick retreat back to the master bedroom, where I was working.

I explained, in loving but firm terms, that he had an hour to wait. He nodded. I went back to work.

A few minutes later, something began to nibble at the edge of my consciousness. I slowly kicked my submerged awareness up to the surface... and heard the unmistakable sound of cat claws furiously scratching against plastic. That, in itself, was fine -- even wonderful, for it might mean that Sam-I-Am was relieving himself in his grand (brand new) litter box, and then performing his after-pee syncopated percussion routine. But something about the sound was off.

So again I zipped off... pressing this power wheelchair to its speedy limits, taking doorways at high velocity, making the tight turns with impressive control of G-forces. Remember, as says Wikipedia, so says this blog, its unofficial mouthpiece. Ergo and forthwith, ipso and facto-dactyl!

The human body is considerably better at surviving g-forces that are perpendicular to the spine. In general when the acceleration is forwards, so that the g-force pushes the body backwards (colloquially known as "eyeballs in"[3]) a much higher tolerance is shown than when the acceleration is backwards, and the g-force is pushing the body forwards ("eyeballs out") since blood vessels in the retina appear more sensitive in the latter direction.
Early experiments showed that untrained humans were able to tolerate 17 g eyeballs-in (compared to 12 g eyeballs-out) for several minutes without loss of consciousness or apparent long-term harm.[4]

Got it? I took those turns, eyeballs well in, retina rejoicing, certainly pushing the envelope of that lame 17 g experimental record.

What? Oh, right. Back to Sammy.

It turned out that the funkitude of the sound was due to the fact that my cat was *outside* his huge brand new litter box, peeing against it, and scratching the side of it as casually as if this were normal toileting and not guerrilla warfare.

Okie-dokie, then! 2-0, Sammy. Ah, but has he succeeded? Has he won? The battles, maybe, but not the damn war!

We cleaned up after him (how sad that I feel it so important to inform the blogosphere that we are hygienic folk) but we did it with quiet, heroic resolve (cue music). I told him, once again, that he had to wait. He nodded. All the principals returned to their original positions.

But we have three cats here at the Manor, and why should the innocent suffer for the sins of Sammy?

So -- after waiting what seemed a decent time, much as a widow might take up dating after the proper interval between death and renewed lust, I fed the cats.

That, in itself, is quite a chore. Dobby and Marmy, son and mother, eat a different diet than the Samster, who has to stay away from all dry food. So we all gather in the kitchen, and they are as sharks swirling around my chair. I serve up the kibble for Dobby and Mom, spritz it with the the eliminate-the-smell-from-the-poo magic spray, and set it down for them to eat.

This is where the fun begins. Dobby, still officially a kitten, is very smart, and very fast. He is perpetually hungry and -- thanks to having been raised knowing nothing but loving approbation -- does not understand exclusion. So this is our dance with every meal: as soon as the dry food touches the kitchen floor, Dobby moves in for a few mouthfuls, then stands back to allow his mother her share. More importantly, he gears up for the grand rush to The Other End Of The House.

As fast as I can, I put Sam-I-Am's food in my lap and take off. If I am lucky, and I never am, I might make the door dividing the bedrooms from the rest of the domicile before Super Kitten. (Unfortunately, due to HIPAA -- or HIPPA, if you're WhiteCoat -- I am having to lie about the floor plan of The Manor. I wouldn't want to overwhelm my audience with accurate descriptions of its grandeur. Indeed, if you did not know any better, you might mistake our opulent digs for a normal suburban domicile.) Marmy gets the best of all deals, being left in peace with a supply of food, all the idiots having rushed off en masse.

I put Sammy's canned food, supplemented with the same magic no-poo-smell spray plus some water, on the floor. Dobby rushes forward, Sammy hangs back, making terrified eyes at me.

Oh, the drama of feline competition. I gently push Dobby back, and make encouraging noises at the elder, and completely mental, animal. Once Sammy begins eating his own food, in earnest, I show Dobby back to the kitchen by employing basic deceit and an abundance of love. He has learned that if he will follow me, I will give him a taste of the good stuff, a portion that I reserve from Sam's wet food. Every meal it is the same -- because Dobby is really and truly conflicted each time we do this. As soon as his energetic little body clears the area, I whirl around and shut the connecting door.

Sometimes, after Dobby and Marmy return to their feeding, I insert myself back into the Sammy Zone. It's a good time for us, a chance for him to get the individual attention he craves so much, and for me to benefit from his unwavering love. Usually.

Tonight, he was hitting on all cylinders.

Fred insists on buying him cans of tuna flakes mixed with egg. Sam loves it. This evening, after all the drama, he fairly scarfs it down, then jumps up on the bed to settle down on my lap...

...where he throws up.

Olla podrida, indeed. Pot pourri, you bet!

There is so much on my mind, so many things beyond animal anecdotes and tales of woe. I will have to attempt another Potpourri entry tomorrow. Consider yourself forewarned.

Excuse me, while I go check on the laundry.

"Despite everything, I believe that people are really good at heart."

Believe it or not -- and, likely, you do not, given my latest postings -- I don't think that videos and photos are sufficient to a blog.

Fred sent me a link to this YouTube video last night. Neither one of us can figure why we had never heard of this... event -- before. Late to the party and irrelevant, I nonetheless found myself belatedly typing away as if something might depend on it beyond my own sanity, outrage, and sadness.

This is a remarkable piece of footage that chills the soul. Knee-jerk leftist-leaning liberal that I am -- because real socialism is not available in a ready mix formula here in the states -- I respect the authority of police and believe, à la Anne Frank, that "(d)espite everything... people are really good at heart."

Usually, tossing in a laden quote from such a heavy source as Anne Frank translates as nothing short of cheesy -- and mightily lazy.

But I think I can pull it off here. The "ceremon(ies) of innocence" are so well documented, by the diary, by surveillance film, that assignations of guilt and innocence should be rote and incontestable.

Thesaurus.com claims these synonyms for incontestable: hard, inarguable, incontrovertible, indisputable, indubitable, irrefutable, positive, sure, unassailable, undeniable, unquestionable.

And yet, in both cases, all we really know is that the principles are dead -- and only in rereading do I see the double entendre, that ethical rigor is as much absent to these situations as mercy or justice, individuated or girded by systemic approbation.

Oh, big words, grand thoughts.

In this video, Michael Pleasance is murdered by police officer Alvin Weems.

When I read about the ensuing cover up, scary in its extent and practiced nature, I found myself humming Dylan's Lonesome Death of Hattie Carroll. (Really! Not a song I normally reference, it had been recently in mind due to the title of my post about Evan Tanner.) Most of the lyrics, I remembered, but not the all important last strophe wherein William Zantzinger faces the judge and is sentenced to six months for Carroll's murder.

When so much has gone so wrong, we all would like to be able to isolate the blame and forget that an ultimate necessitates a penultimate. When so much has gone so wrong, we forget that no event is discrete.

You who philosophize disgrace and criticize all fears,

Bury the rag deep in your face,

For now's the time for your tears.

Paul Newman

“We are such spendthrifts with our lives,” Mr. Newman once told a reporter. “The trick of living is to slip on and off the planet with the least fuss you can muster. I’m not running for sainthood. I just happen to think that in life we need to be a little like the farmer, who puts back into the soil what he takes out.” -- New York Times, September 27, 2008

It was a very good year

This photo -- of the outcroppings, the rocks, at Slate Creek in the Grand Canyon -- comes from one of TW's latest posts. He goes on to seamlessly pair image with verb:
but now
the days
grow short
i'm in
the autumn
of the year
and i think
of my life
as vintage wine
from fine
old kegs
from the brim
to the dregs
that poured
sweet and clear
it was a
very good year

Z on TV

It's hard not to snort-laugh -- forget titter-laughing and simpering guffaws. And, yes, in the snort lies the proof of my political pudding:

http://weblogs.baltimoresun.com/entertainment/zontv/2008/09/couric_letterman_too_much_for.html

Translational Research: Gene therapy for chronic pain enters first human trial

University of Michigan Health System Newsroom

ANN ARBOR, Mich. —This week, University of Michigan scientists will begin a phase 1 clinical trial for the treatment of cancer-related pain, using a novel gene transfer vector injected into the skin to deliver a pain-relieving gene to the nervous system.

A gene transfer vector is an agent used to carry genes into cells. In this groundbreaking clinical trial, the investigators will use a vector created from herpes simplex virus (HSV) – the virus that causes cold sores – to deliver the gene for enkephalin, one of the body’s own natural pain relievers.

“In pre-clinical studies, we have found that HSV-mediated transfer of enkephalin can reduce chronic pain,” says David Fink, M.D., Robert Brear Professor and chair of the department of neurology at the U-M Medical School. Fink developed the vector with collaborators and will direct the study.

“After almost two decades of development and more than eight years of studies in animal models of pain, we have reached the point where we are ready to find out whether this approach will be effective in treating patients,” Fink says. The investigators are recruiting 12 patients with intractable pain from cancer to examine whether the vector can be used safely to deliver its cargo to sensory nerves.

The trial represents two firsts, says Fink: It is the first human trial of gene therapy for pain, and the first study to test a nonreplicating HSV-based vector to deliver a therapeutic gene to humans. Fink says the technique may hold promise for treating other types of chronic pain, including pain from nerve damage that occurs in many people with diabetes.

The HSV vector, genetically altered so it cannot reproduce, has a distinct advantage, Fink says: “Because HSV naturally travels to nerve cells from the skin, the HSV-based vector can be injected in the skin to target pain pathways in the nervous system.”

Gene therapy for pain

Chronic pain is an important clinical problem that, despite a wide array of therapeutic options, cannot be effectively treated in a substantial number of patients. Fink notes that one key problem in treating pain is that the targets of conventional pain-relieving medications tend to be widely distributed in the nervous system, so that “off target” side effects of the drugs often preclude the use of those drugs at fully effective doses.

“This provides the rationale for using gene transfer to treat pain,” Fink says. “We use the vector to deliver and express a chemical that breaks down very quickly in the body. The targeted delivery allows us to selectively interrupt the transmission of pain-related signals and thus reduce the perception of pain.”

Enkephalin is one member of the family of opioid peptides that are naturally produced in the body. Opioid peptides exert their pain-relieving effects by acting at the same receptor through which morphine and related opiate drugs achieve their pain-relieving effects. In this trial the enkephalin peptide, produced as a result of the gene transfer, will be released selectively in the spinal cord at a site involved in transmitting pain from the affected body part to the brain.

“We hope that this selective targeting will result in pain-relieving effects that cannot be achieved by systemic administration of opiate drugs, “ Fink says. “This trial is the first step in bringing the therapy into clinical use. A treatment is at least several years off.”

Preclinical studies led to human trial

The phase I clinical trial represents the culmination of studies performed by investigators working in the U-M laboratory co-directed by Fink and his wife, Marina Mata, M.D., also a professor of neurology at U-M, along with colleagues at the University of Pittsburgh led by Joseph Glorioso, Ph.D. In published studies, the researchers have demonstrated that HSV-mediated gene transfer is effective in rats with pain resulting from inflammation, nerve damage or spinal cord injury, and in mice with pain caused by cancer. The extensive preclinical data in animal models were reviewed by the Recombinant DNA Advisory Committee at the National Institutes of Health. The Food and Drug Administration approved an investigational new drug application for the therapy in February.

Funding for the preclinical studies was provided by the NIH, and related studies of the vector were funded by grants from the Department of Veterans Affairs and the Juvenile Diabetes Research Foundation. The human trial is supported by a research grant from Diamyd, Inc., a subsidiary of Diamyd Medical (DIAMB.ST), a publicly traded Swedish biotechnology company. Fink has no financial interest in or consulting relationship with Diamyd. He is an inventor on patents related to this work that are owned by the University of Pittsburgh and licensed to Diamyd. Susan Urba, M.D. and Frank Worden, M.D., medical oncologists at the U-M Comprehensive Cancer Center will serve as principal clinicians for the study, assisted by Suzette Walker, N.P., who will serve as study coordinator, and Heidi L’Esperance, who will serve as data manager.

Trial details

The investigators are seeking patients with intractable pain related to cancer that is unresponsive to maximally tolerated doses of conventional analgesic drugs. The vector will be delivered in 10 small injections into the skin, and will require an overnight stay in the Michigan Clinical Research Unit at U-M Hospital. For more information, contact the U-M Cancer AnswerLine, 800-865-1125, or visit:
www.med.umich.edu/engage/
www.cancer.med.umich.edu/research/clinical_trials.shtml
www.med.umich.edu/neurology

Stridor

One of the medical blogs I enjoy directed me to this story at a relatively new and entertaining blog, Ready To Deliver?

It made me remember the pride I felt at my recent highjinks in ICU. After four days on a ventilator, I was eager to be extubated. Finally, the tube came out and I eventually settled down in an effort to get some real sleep. That didn't happen because I had stridor and was put back on some sort of forced air do-dad.

As I would simultaneously tire and drift off, the oxygen saturation numbers would kick off a loud, obnoxious alarm -- and bring to my bedside a stream of medical types, all yelling at me to breathe, and other ridiculous verbal commands.

So, as my heart pounded from the sudden light, noise, and movement, the next thing my nurse would insist upon? "Retired Educator, you have got to relax and get some sleep!"

Yes. This went on for what seemed like forever but could only have been about 8 hours. The various doctors who wandered in assured me that the ersatz tube could be gotten rid of the next day, and that I should just relax and get some sleep -- surely I was exhausted!

ALARM-ALARM-ALARM-ALARM!

I decided that all tubes, except the foley, for which I was, in truth, quite grateful, would have to go... The i.v. was fine, too -- didn't hurt, didn't keep me awake, and didn't ALARM.

I was polite enough to discuss it with my nurse. She must have thought the discussion to be purely philosophical -- until I detached and yanked everything on my face, and handed it to her while she was still sputtering rules, regulations, and orders.

Respiratory Therapy decided not to go to war over my show of initiative, and the regular alarm proved much easier to sleep through. The alarms cannot be turned off -- but they were set at their least sensitive. And so I finally fell into a natural sleep...

Until my nurse showed up to put in another nasogastric tube. My reach had exceeded my grasp! I gather that most people who yank things out while in ICU are confused and agitated, have to be restrained -- both chemically and physically. So it must have been a weird site to my surgeon when he walked in and found me studiously attempting to help in the reinsertion of the n/g.

I don't know why. I mean, I explained it clearly enough: I meant to just pull out the breathing tube but accidently pulled out the feeding tube as well [goofy grin].

The Trinity of These Days

I am in denial.

Can vancomycin or cefepime, or a combination thereof, cause severe depression? Is it true that there is always a first time?

The day after I was home from the hospital, I decided to tell Fred about the growing and severe pain in my *left* shoulder, ending the admission with the happy understanding that in no way could it be related to infection of any sort.

His response was to say": "That is what I am talking about... We need to talk... I have been trying to have this conversation for a long time... What are we going to do when you get even worse? I can't take care of you. And who is going to take care of me?"

There was yelling and crying, on my part; Stalking off, on his.

And no one has discussed the pain in my shoulder. The *left* one. No, that's not true. He told me to tell my VIPMD, who did seem to take me seriously -- maybe.
After having pooh-poohed the symptoms of fever, pain, and fatigue for over a year that led, finally, to the discovery of a septic joint, I guess he must take me seriously. God forbid that I should simply inspire his attention. God forbid that simply my complaint should carry the day.

But instead of looking into it, he spun off into never-never-land, where shoulder pain devolves into... something to chart, something to watch, something to bury under the weight and mass of our present troubles.

I cannot reach across my body with that arm, cannot raise it above shoulder height. It throbs with no provocation, and hurts sharply with movement. And -- oh! -- does it get moved -- given that my right shoulder is, well, missing. I am extremely grateful to know that there is no infection -- an impossibility since I am on IV antibiotics -- and that the problem is probably "mechanical." The prosthesis must be loose.

(Yes, both shoulders were replaced. Along with a hip... which is doing marvelously. The other hip is pinned. One ankle is plated and screwed, as is the right elbow.)

The night that Fred and I had this most recent irrational (that is, rational to an *impossible* degree) spat, I relieved him of IV drug duty, although I had to wait two days for an extension to my PICC ports to be provided so that my right hand could reach the tubing. He had been ranting about having places to be, people to see, and the difficulty of doing so while tied to my antibiotic regimen. I believe I referenced his social schedule with a heavily ironic tone before promising to make the changes necessary to free up his dance card.

He said it was good to see me taking some "responsibility" for myself.

"But where does by far the bulk, the whole ambulance load, of pain really come from?"

Okay, so I have been waiting years to have some remote reason for quoting Salinger's Seymour, An Introduction -- this quote, in particular. That he references the pain of artists is no deterent to my citation. I am an artist. I am! Okay, already! Shut up, you.

Salinger is an indulgence that I am so sad to have outgrown. Or do I flatter myself?

Denial, depression, pain -- the trinity of this post. A touch of self-pity.

He woke me around 3 am because I was moaning in my sleep, rocking back and forth. Noon now, it is time to try for sleep once again, and to put all this to rest. Strict instructions shall be given to ignore any and all moans, any and all movements.

Denial, depression, pain -- the plan is to sleep off this shameful state, this wailing weakness.

As for the remnants of self-pity? It is a waking task, to take on that delusion. You've seen me tackle it before... and with such success, too. Hence the word "remnant."

Oops, time to flush my line and hook up to antibiotic number two...

A Jacques Brel Morning

CHANSON SANS PAROLES

J'aurais aimé ma belle
T'écrire une chanson
Sur cette mélodie
Rencontrée une nuit
J'aurais aimé ma belle
Rien qu'au point d'Alençon
T'écrire un long poème
T'écrire un long " je t'aime "

Je t'aurais dit " amour "
Je t'aurais dit " toujours "
Mais de mille façons
Mais par mille détours
Je t'aurais dit " partons "
Je t'aurais dit " brûlons
Brûlons de jour en jour
De saisons en saisons "

Mais le temps que s'allume
L'idée sur le papier
Le temps de prendre une plume
Le temps de la tailler
Mais le temps de me dire
Comment vais-je l'écrire
Et le temps est venu
Où tu ne m'aimais plus

The Lonesome Death of Evan Tanner

The question of whether Evan Tanner committed suicide or simply died an absurd death out in the desert was raised almost immediately upon word of his passing. There is no discounting the effect of his difficulties with life -- his substance abuse, his depression, the virtual destruction of his MMA career -- but it is also much too tempting to yield to the weird machismo of a martial artist's taking his own existence and snuffing it out, supposedly in heroic fashion, on his own terms.

The truth is destined to be a casualty. In any event, here is a summation of what is known as of this date, as copied from Wikipedia:

In the second-to-last entry posted on his Spike-TV blog on August 27, Tanner wrote,
"I've been sitting around this apartment, bored to tears, waiting on the last of the gear I need for the desert adventure to come in the mail. I've really been looking forward to getting out there. I've been writing about it a little bit here. It seems some MMA websites have reported on the story, posting up that I might die out in the desert, or that it might be my greatest opponent yet, etc. Come on guys. It's really common down in southern California to go out to the off road recreation areas in the desert about an hour away from LA and San Diego. So my plan is to go out to the desert, do some camping, ride the motorcycle, and shoot some guns. Sounds like a lot of fun to me. A lot of people do it. This isn't a version of Into the Wild. I'm not going out into the desert with a pair of shorts and a bowie knife, to try to live off the land. I'm going fully geared up, and I'm planning on having some fun.

I do plan on going back pretty far, so I did mention in one of my posts that I wanted to make sure to have good quality gear. Any failure of gear out in the desert could cause a problem."[7]

Tanner had recently purchased a dirt bike, and on September 3 he rode into the desert-like region north of Brawley, California to go camping.[8]

According to Tanner's manager John Hayner, Tanner called that afternoon to say that his bike had run out of gas, and that he would accordingly walk back to civilization.[8] [2]

According to the marine search and rescue team who found his body, he was in the desert camping and while trying to return to his camp after hiking to Clapp Springs, he succumbed to elements after he drank all of his water while hiking to anticipated wet springs, only to find them dry.

He waited until nightfall, after calling friends, to attempt a quest back to his campsite where he still had water and a fully fueled motorcycle.

Evan succumbed to the exposure of the elements. He was found 2 miles from his camp after having hiked 5 miles away. Temperatures that day reached 118 degrees Fahrenheit, and friends became concerned and reported Tanner missing after he failed to contact them.[8]

His body was discovered by a Marine helicopter on September 8, and the Imperial County sheriff's office cited heat exposure as a preliminary cause of death.[8]

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It's weird that I got worked up so recently over Tanner's fight with Kendall Grove -- a fight he lost in a split decision. A weird, and *wrong*, decision that scored this way:

29-28 Tanner

30-26 Grove

30-26 Grove

Thirty -- Twenty-six? More and more, I understand the constant vow of fighters to not let anything go to the judges, to not be subject to the whims of a decision.

It was a fight that did more than showcase two fighters in terrible need of redemption within the UFC -- the difference between Kendall Grove and Evan Tanner is rich and deep -- and exemplified by more than just the Mountain Man beard. Grove is a child, and spoiled. Tanner was a fighter/philosopher, and world weary.

Just how world weary is what we are all wondering now.

He beat her senseless

My apologies for not making mention before now -- but La Belle Bianca Castafiore will be de retours from a luxurious vacation early next week. We have missed her around the homestead -- her dulcet tones, her low key and comforting presence.

Yesterday and today have been marked mostly by pain and depression. I am doing the best I can to address each but these bastard symptoms are adroit at feeding off of each other.

Fred ferried me to the Infectious Disease doctor and Infusion Center, then off to see my VIPMD. I have not been keeping track -- but it hit me yesterday how much we are paying for the privilege of parking. It's outrageous.

Riding in the car brings me to tears, and that stresses the Fredster out, particularly as he is doing his best to avoid potholes, uneven streets, and rabid commuters. Having me sob doesn't do much to keep him calm -- and he is the one having to face some of the worst traffic known to motoring-kind.

I abhor others' logic in response to my illogical emotional outbursts. My MDVIP, for example, felt it necessary to point out that I am in much better overall health now that the infection has been "removed." Never mind that I am left with only one useful limb -- in his shortsighted view, I should be happy to be alive.

Harrumph. What a PollyAnna-Man. I might as well be gorked out, put in diapers, and parked in a corner somewhere. It took me five hours of hard work to accomplish the very basic of tasks this morning -- all before the gentry of the manor rose from their slumber, as I don't wish to be pitied, or aided. Just as Fred got up for the day, I was ready to take my first nap, and was, of course, in tears. He must think I do nothing other than weep.

I cannot make you understand.

There was a sweet elderly couple in the waiting room at the doctor's office yesterday. They carried a folded walker, so I am not sure who actually needed it. It seemed to function like a sleek fashion accessory -- the shades pushed up into the hairline, the pink crocodile cowboy boots.

She said, in that quiet, sweet voice that some confused -- but secure -- people adopt: "This is a nice room. I wonder what they use it for." Her husband told her that it was a waiting room and that patients sat there until seeing the doctor. She was clueless about being at the doctor's office but covered well -- laughing, tossing out "of course" after "of course."

A few minutes later, she wondered why she was there, and he told her that she had some sores on her arm that would not heal, and together they looked at those reddened spots of skin. She managed more laughter and the obligatory "of course."

She had beautiful poofy white-white hair, no grey, and swimming blue eyes.

I dreamt that he beat her senseless in the elevator on the way down to the very expensive parking garage.

Experimental Treatment CRPS-1

Forwarded from Jim Broatch, Reflex Sympathetic Dystrophy Syndrome Association (RSDSA): Clinical trial for experimental new treatment for CRPS-I at McGill University Health Centre

Clinical trial for experimental new treatment for CRPS-I at McGill University Health Centre
Investigator:Dr. Mark Ware
MUHC Pain Centre
Montreal General Hospital
Candidate profile:· Over 18 years of age· No kidney or liver disease· No diabetes
Length of trial: 10 weeks maximum
For more information: Please contact the Research Nurse, Sylvie Toupin at (514) 934-1934, ext: 44348

http://rs6.net/tn.jsp?e=001jEj1hqYmc_-tpdQk65GWBWAkHnL5UgPORxCXsPaIbHSPuEFWQswP7BKnuU6Wxa9jZCW0RXD5Lftv7BDk9AsZ0jkSNp-S_vCzSw0P1A53iXuARO0AN1RgC4C3lefrjleFNK825kaLYF7tVEjAPnAnDN6EyHeEcTaF


This E-alert was made possible by the contribution of the members of the Reflex Sympathetic Dystrophy Syndrome Association (RSDSA). To learn more about becoming a member of RSDSA, please click here.

RSDSA Home Page

The Dilaudid Effect

Not exactly dreams, I envision static vignettes wherein figure some of the most important people in my life. I seem to be dreaming staged photographs -- some of Annie Leibovitz quality, most black and white, all extremely legible (no need to wonder about envy, or loss). That these things are drug-induced seems likely, but I am clearly the Editor-in-Chief of content and, perhaps, intent. I am comfortable in the knowledge that there is no schism to me -- at least not anymore, at least not in any way that matters.

My Mother holds a tall blond toddler, standing on a concrete slab of a balcony in Ankara, thin-waisted, pointy breasts, Modigliani-neck, a pale blue linen dress. Her hair is thick and black, wound carefully into a style that defies caricature, that is: timeless. Timeless. That pretty well sums her up -- but not the tall blond toddler. She somehow managed nearly straight blond hair, very, very fine, atop her fearful face with the open eyes, and freckles. My Mother is strong, for the long little girl leans away from her firm body, hands in the air, grabbing, grabbing -- creating some tough torque, a kick in the belly. She told me, I think, that there were airplanes everywhere, that I was reaching out to the sky, that they were dropping leaflets about Kennedy's assassination.

Why? Why would they do such a thing, in Ankara, of all places? A civilized locale, neighbors within a nod, a wave. Why would they drop leaflets in the city, where the sky is much too crowded for competing airplanes? And what could they possibly say that our radio had not?

Still, it is an iconic image, her there, framed by the doors to the tiny balcony, me (long, blond, and ugly) pushing against her to reach for the sky -- which we cannot see, where there may be heroics going on, but likely not. I cannot be quite four yet, which means, obviously, that she hasn't left us, that she is still Mother, still larger than life -- but, as always, concerned with fiction.

There are others, like the glom of my oldest brother onto the cover of Dylan's Nashville Skyline, or my stepsister's bright orange Vega (we were pretending that it was a sportscar... shoot, pretending that it was a *car*!), around which a small crowd is gathered, speechless at her choice. There is the Other-Brother-Unit...

No, that is a lie. There is never the Other-Brother-Unit. He is too precious; He is always gifted, in me, in my mind and heart, with many more chances. He just sort of floats around these stillbirthed dreams of mine, never fixed, often laughing, even through tears.

I guess we all need someone to love and admire while we are awake! And he has a calling card that we are going to obliterate week by week, every Thursday night, ticking off those minutes like small time bombs.

When I told Professor Bersani that I wanted to write about the role of habit in Proust -- he told me that he would not approve the topic, as it had "already been done." I had the flu, it was raining, and the stacks were musty. The essay in question? A mostly self-referential work by Beckett.

"The laws of memory are subject to the more general laws of habit..."

Parkour and Free Running

My brother offers me armchair travel -- one of the few insightful people who recognize the need to get *out* of both this body and this place. He shows me the large and the minute of canyons and flowers perfect in a rocky crack.

The internet is, of course, an incredible gift. I can go, virtually (if, alas, no longer virtuous)anywhere, anytime.

I thought my need for compensatory movement would eventually die out and disappear, and simply rededicated my efforts at mental tennis mimicry... but it becomes less and less satisfying.
Fortunately, I discovered the world of parkour and free running. Sweet relief. A conduit for challenge, joys, and tears. If you've not yet had the pleasure, go check out some of the marvelous videos over at YouTube: