Thursday, February 14, 2013

"Can You Help?"

If you have CRPS, you're probably used to having medical types whipping out cameras and photographing your dystrophic beauty.  Believe me, I know what a boost it can be to the ego, and I remember the early days, when the ensuing struggle with vanity was almost a lost cause.

Since then, I've watched a lot of America's Next Top Model, learned all I could from Tyra and
The Jays, and now when a doctor pulls out a camcorder or a smartphone, depending on his specialty, I give him either a Fierce Eye or a full body Smize, then put my worst foot forward.

Yes, I jest, in a way.  It has become rare for me to be interested in "raising awareness for CRPS," even when it's done by art ('cause you know what an art patron I am, particularly of the bad and the grotesque!) because of the huge gaping emptiness that ensues.  I think I once wrote a post asking what came after "awareness."

Ah, but this is precisely where I am at risk of selling my soul to the Hornèd One (I tell you, hanging out at All Poetry has its perks -- Did you catch that?  "Hornèd"?  I added another syllable and set back poetry a hundred years with hardly any effort at all!).  This is when people manage to signal one another behind my back, shaking their heads in pitying sadness.  I hate pitying sadness.

If we're gonna do this, my fellow CRPSers?  We're gonna do it with Fierce Eyes one day, and a slinky Smize the next, and with engaging snark peppered with factoids from the NINDS cheat sheet.  "Yes, my brother, yes, my sister, that factoid is straight from the mouth of the National Institute of Neurological Disorders and Stroke, a major subdivision of the National Institutes of Health... snap..."

Or we can try this other thing that I just heard about on Twitter.  Read about on Twitter.  Since my Twitter experiences are mostly hallucinogenic, I hear, see, read, touch, and taste the flitting, flying 140 characters of stuff before me.  Sometimes, I feel them, too.

So there is this girl.  Her name is Nadia, and she is a Brit.  She is 17 years old and in her second year of studying Art and Design.  Her Dad has CRPS / RSD and she decided to organize her final project for school around the idea of a visual campaign to raise awareness of this disorder, disease, this madness, this... well, this CRPS / RSD thingy.

What she is asking is pretty simple, though it takes a bit of courage to put yourself out there.  Leave it to a smart and talented 17 year old to believe in us -- that we can show the world, or at least whoever sees her art show, what CRPS / RSD can look like.

You are to hold a placard of some sort -- paper, cardboard, whatever doesn't hurt you -- and record on it your name (optional), where you live, the areas of your body afflicted, how long since you've been diagnosed, and then sum up yourself or your experience with the pain of CRPS... in one word.

Nadia requests that you email your photos to and kindly remember that she has a deadline to receive them by 20 May 2013.  Obviously, if you have questions about the project, or formatting, or anything, email her directly.

What won me over was the photo of her Dad.  I expected something artsy-fartsy, maybe in scary black and white (though shooting CRPS in black and white feels like one is almost insulting the disease, you know?) -- maybe he'd sport a top hat and bunny slippers.  Or -- and this is tiresome -- he'd be half-collapsed, hand across his defeated brow, staring death rays at the camera.

Instead, she, or her Mom, or someone, took a snapshot of her Dad, just her Dad, and there's a lot of love in the mere act, and there's a real awareness of what CRPS is doing to that dear Dad.

Oh, boogers.  I am using it without her permission.  Well... hmmm.   She is distributing it on Twitter as an example of what she is looking for, so I'm hoping that I am just extending her own gesture.  I'll shoot a copy of this post over the pond to see if it's okay.  I promise.  I swear.  (Huge sigh of relief.  It's okay.  And Nadia took the picture, and apparently he, as will most of us, struggled with that one-word choice.  Thanks for the permission, and again, it's a great photo.)

I like his face.  I understand his face.

For me, the hard part of participating in Nadia's Project was dealing with the whole "awareness" issue, until that hair was finally so split as to be nonexistent.  The photograph was easy, except that it hurt to do it, but that's nothing.  Making the sign appear legible took three tries and that, too, was a bit hard.  Also hard -- time since diagnosis?  How many people with CRPS had it for years prior to diagnosis {waving::hands::like::a::maniac}?  Also... that ONE word bit.  I went with something that I feel captures the real moi as well as the impact of CRPS pain -- what a word coup!  But it was a difficult moment, deciding whether to tell the truth or to lie.  So I did what I thought Nadia would want, and used her Father for a reference.

This is what I just sent her:

By the way, those are two of the SIX (that's SIX) cotton/linen blend throw pillows that I got for $40 (that's FORTY buckaroos, mis amigos!).  They are a bit matchy-matchy for my taste but make a great clean and nature-oriented background for a shot of my necrotic and nasty feet.

I did not picture my face because I did not want to.  Then I wouldn't be able to see through the tears to type.  Sob.  Sob.  Besides, I love keeping track of my feet on the color wheel of the seasons.  We are in full winter here, and so, my feet are, of course, smaller than you've probably ever seen them, and much more in the blue range than the red.  I remember when Fred and I lived in a half-room cabin up in the hills, no electricity, leaky roof, dirt floor -- but we always had a guitar to play and blessèd free time to watch my feet change color for entertainment.  (We had one of them as-seen-on-TV Olde Brooklyn Lanterns.)

So let's help Nadia, and through Nadia, ourselves, via her final art project.  And here's a big hope and a prayer that her Dad feels better soon.

NOTE: Up top, in the first line "CRPS" is linked to the photographic gallery section of the Clinical Practice Guidelines, first put together by Dr. Anthony Kirkpatrick, now in its Third Edition and overseen by a distinguished Scientific Advisory Committee.  I happen to think it's a great document, and with a little time and work, accessible even to us laypeople.  So should a doctor give you The Shrug, and say something like "well, we're all working in the dark, here!" -- first, buy her an Olde Brooklyn Lantern and then gift him with a printout of the Third Edition of the Clinical Practice Guidelines.


  1. Besides thinking how wonderful it is that 17 year olds come along and remind me (us?) to pick myself up, dust myself off, and start all over again (again...), trying to raise awareness (or whatever),
    AND thinking how great it is when people (us?) actually respond to the reminder,
    I admit I thought,
    What great pillows!

    I don't think I am without empathy, but I thought the same thing in the movie "Carrington" when Lytton Strachey (Jonathan Pryce) was dying... on the most beautiful (and spotless, and seemingly ironed) white, white pillow cases.

    And here's a big hope and a prayer that the suffering (real, not movie) of Nadia's dad and you and all may be lightened... heck, let me be 17 and bold and change that "lightened" to "ENDED"!

  2. Hi ya, you artist, you.

    I hate to say it, but there's a problem with the pillows. Now the living room looks more like a retirement home solarium, or sumpthin'. It screams "Florida!" -- not to knock Florida.

    Oh, please. Empathy? I have every detail of Mark Greene's room in Hawaii memorized and plan to recall it as I die, in case I happen to croak on the kitchen floor next to a fresh hairball. It's the window treatments that speak to me.

    What struck me about Nadia's dad is that I'd never heard of anyone with CRPS of the tongue, and just cannot imagine how horrible that must be.

    And a cool factoid about this 17 year old? She's a Taekwondo practitioner, apparently of some talent.

    Fresca, dah-ling, you are a dear.


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