Sunday, January 18, 2009

Per se

Following the death of a man with CRPS, the anesthesiologist interviewed by the local Colorado NBC news station said that CRPS takes over, or consumes, a patient's life. It's true, and while a simple and easily understood truth, it is embarrassing.

Equally odd? He refers to CRPS as an "entity," which feels, somehow, like unwarranted exhibitionism, like having a flasher for a doctor. I mean, it's like this: I can know The Entity because we are intimate; You can't because you aren't.

"Do you get out much?" ventured my tremulous aunt a few days ago.

That ought not to be so hard to answer -- a little white lie would do nicely. Instead, I found myself trying to tell the truth and heard utterly twit-like statements leave my mouth -- stuff about pain and fear of injury, fever and sweats, an intravenous schedule; But mostly I harped on overwhelming fatigue. That's not something I often formulate, so I surprised even myself with that excuse. Like I said, embarrassing.

I try to remember and heed the advice of the good Boutiqueur: "Take it a day at a time. Heal."

A landmark birthday rapidly approaching, I have been thinking quite a bit about death, and so, by extension, about life, as well. I don't believe that God saves people -- or, at least, does not kill them off -- because He has something super special in mind for said folk. I don't believe that God is out there opening some windows and doors, shutting others, and urging us not to hit our heads -- it is just much too pedestrian a role for the deity.

There are days I would like to die, days I pray for it, proving myself, in the process, to be an unenlightened hypocrite -- the worst sort of bad hypocrite! Yesterday having been such a day, I approached today with caution and stringent organization, divvying up the allotted hours and minutes as if my activities actually had import.

Shiver. Flashes of a recent Jane Eyre interpretation -- and the wonderful scene in Chapter 21 where an uptight Eliza lights into the vacuous Georgiana, as Mrs. Reed lay dying upstairs in the famous "red room" at Gateshead Hall. Eliza advises:

Take one day; share it into sections; to each section apportion its
task: leave no stray unemployed quarters of an hour, ten minutes, five
minutes — include all; do each piece of business in its turn with method,
with rigid regularity. The day will close almost before you are aware it has
begun; and you are indebted to no one for helping you to get rid of one
vacant moment: you have had to seek no one's company, conversation,
sympathy, forbearance; you have lived, in short, as an independent being
ought to do.

Okay, so my internal Eliza Reed has been mouthing off, leaving me convinced that I'll be a better person for checking items off of a list -- and being solitary about my accomplishments, too. Don't we all want to arrive at the end of a day, or a life, able to say we "got rid" of those pesky stray vacant moments? I set off. The game was a foot.

Getting the years of what I hope was gravy off of the aunt-donated tureen took its entire allotted 20 minutes, and a more righteous person would have stretched it to half an hour. (Hey, you try doing the dishes without benefit of shoulders! That freaking tureen was filthy, too, and I can count on one hand the number of times I have plaintively wailed: "Oh my dear Lord! If only I had a huge freaking soup tureen with little acorns on the handles and lid, as well as unidentifiable muddy brown stains in every acorn-encrusted nook and cranny! Yes, God, if only I had such a tureen.")

Fred's tureen reaction was the best:

"I guess we gotta make some soup."

Unfortunately, the tureen is not Pfaltzgraff. I love saying Pfaltzgraff. Though there is nothing keeping me from saying Pfaltzgraff. In fact, there are young men and women putting their lives on the line right this instant just so that I may freely say Pfaltzgraff. (It doesn't hurt to occasionally beat the bushes of the blog {blush} just to see who is skulking around and besides, I refuse to be liable just because you were stupid enough to lolly gag around in the poison ivy.)

Next domesticity? Attacking the accumulated cat hair! If I consolidate the time spent on this eternal project *today*, it'd be close to an hour and a half -- including vacuuming. I am queen of the Lint Rollers, keeping one hidden in almost every room, along with my collection of 14 karat gold designer Grabbers.

Because I am immunocompromised, I am not allowed to clean the cats' litter boxes. Crocodile tears... That pleasure falls to the Fredster who is just so darned *good* at it, and cherishes the task to such an extent that no one would dream of depriving him. Don't even joke about it! Pfaltzgraff! Still, they react to my hair assaults much in the way that they react to the organized removal of their precious pee and poop. I look down to see them moving around the chair much like one would expect a gaggle of shark to swim. Then they find a perch from which to observe -- Sam-I-Am from the highest point possible, maybe atop the shredded leather recliner; Dobby from some midpoint, like the second story of the Cat Condo; and Marmy from an I-Can-See-You-But-You-Can't-See-Me spot, usually behind the turned leg of a chair. Her tail alone is bigger than anything she ever hides behind, but, hey! That's Marmy. *Ack* *Ack*

When I drag off coverlets, pillows, throws and what-have-yous to the washer, they all troop behind me, one by one, reminding me of how elephants sometimes troop along, tail to trunk, trunk to tail. Even though we always do full loads, always use cold water and the shortest cycle, I know I am making big old carbon footprints when I go on the warpath against cat hair. I hope future generations will forgive me.

Vacuuming with CRPS and no shoulders from a wheelchair is a riot, a veritable hootenanny. Pfaltzgraff! Watching it is also fun, from what I am told, particularly if the spectator is clueless as to why someone might yell, curse, and gyrate while tossing cords high into the air and popping wheelies...

Sure as can be, whenever there is domestic discord in Marlinspike Hall, one of two calamities will befall me when I endeavor to vacuum. Either I will manage to wrap the electric cord of the vacuum around one of my huge back wheels and therefore am unable to extricate myself without, sniff, assistance, or, similarly, I will get the cord wrapped around my feet and from the pain that causes, become incomprehensible, useless, and desperate, but very LOUD.

It sucks to have to thank someone when you are mad at them. Fred is always gracious about it. I wonder, though. As often as it happens? It has only happened twice when he was not at home. Pretty astounding odds. Hmmm.

Pfaltzgraff!

Yes, I am perfectly aware of the link sitting atop all my verbiage, the genesis for this rambling. A man who had CRPS died. People with CRPS die all the time, I would imagine, there being no special dispensation from death just because you spent your lifetime in unimaginable pain. A fair number of people, in fact, reportedly kill themselves in advance of their God-allotted term due to the constant burning, throbbing, lancinating pain.

Due to not being able to wear shoes. Not being able to wear any clothing that is not almost sinfully soft and of a good natural fiber -- oh, but it all must be "pull on" -- you know, the crapola that passes for gimp "active wear." Get CRPS in your face and enjoy fissures splitting open your skin, oozing. Try hard to swallow your longing, your desires, especially when the only place left that's tolerable to touch is one half of one hand.

No, in all seriousness -- this is why I would kill myself: I am not able to do that which I was born to do. I am extremely gifted and now that talent is nothing but a gaping and twisted empty grin. Caring for, nurturing, teaching, and learning from others has become this entirely oral affair -- just costume jewelry verbiage kissed with cheap Austrian crystals. Oh? Excuse me! Pfaltzgraff! Did I say all that out loud? Did I mention the unending pain -- not minor pain -- unending burning, throbbing, lancinating -- oh? Been there. done that? Okay.

I used to scoff at what had to be Urban Legends, until I recognized the thoughts rolling by on my personal teleprompter as being born of the same Myth: if I could, I would cut this leg arm hand foot face head off...

My condolences to his family and friends. Maybe he died from a drug reaction, a stroke. Maybe he had a heart attack. They speak of his peace, and that is a grand, grand thing.

CRPS cannot kill you. It takes over, it drives you crazy, it makes you hurt beyond what you thought possible. In combination with my necrotic and infected skeletal system, with that dilation of the aortic arch, I feel downright doomed -- tick to ck. Pfaltzgraff!

But don't overreact! Because CRPS cannot kill you --

Per se.



Nick HOCH, October 10, 1971 - January 7, 2009. Resident of Thornton, Colorado. After a courageous battle with RSD, Nick passed away peacefully while in the hospital awaiting surgery. Nick was born and raised in Aurora, CO and graduated from Rangeview High School. He honorably served his country for 3 years as a Paratrooper in the U.S. Army. He was one of four children born to Thomas and Laura Hoch and was the beloved husband of Katherine Hoch. Nick will forever be remembered by his devoted brothers, Tom Jr. and Rob, loving sister, Emily, beloved children, Nicholas Gerald Jr., Peter Thomas and Henry Douglas, along with countless other friends and family whom were blessed to know him.

2 comments:

  1. I agree with you. I have heard of organ failure from someone with CRPS but I suspect it was a case of extreme neglect (as in "it hurts, don't move it" to the extent that the person was bed ridden and on multiple meds. These probably caused the failure.

    Although I check in to you blog from time to time, I haven't kept up with how you are going. Are you aware of the new brain science and the implications for chronic pain sufferers. There are non drug ways of deqling with symptoms of cRPS. Controlled breathing activates the parasympathetic nervous system, brings about calm, stabilizes labile BP and reduces pain. Mirror visual imagery, guided imagery, self hypnosis, laser acupuncture, Yamamoto New Scalp acupuncture etc all help. There is heaps of research to back up these treatments. If interested you can find links to research on my blog. Scroll down on the left of the blog. I too was a language teach. I taught Japanese and, like you, did not continue due to CRPS.
    I hope you find something to help you soon.
    jeisea
    hyyp://www.crps-rsd-a-better-life.blogspot.com

    ReplyDelete
  2. Jeisea --

    Somehow... I don't think you've any idea what you are agreeing with, but be that as it may, you've managed to repeat your message and promote your blog.

    Yes, I am aware of x, y, z and the fantastic results you are having.

    I am Queen of Biofeedback and have a Relaxation Response that would leave you breathless and distracted in my wake!

    You should hook up with Coach Marla, "the first known RSD Life Coach," (Damn, I was gonna do that!) --->

    http://coachmarla.blogspot.com/

    Also, I detect a potential kinship with blogger "Going Down Swinging" -- a noble, if slightly depressing, mélo-mélo sentiment:

    http://prefontaine44.blogspot.com/

    Take care, you!

    The Retired Educator
    Enemy of Woo
    (In for The Castafiore)

    ReplyDelete

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