never again never again never again

i fell asleep in the wee hours to simon and garfunkel's "my little town." maybe you know it.

In my little town 

I grew up believing 

God keeps his eye on us all 

And he used to lean upon me 

As I pledged allegiance to the wall 

Lord I recall 

My little town 

Coming home after school 

Flying my bike past the gates 

Of the factories 

My mom doing the laundry 

Hanging our shirts 

In the dirty breeze 

And after it rains 

There's a rainbow 

And all of the colors are black 

It's not that the colors aren't there 

It's just imagin-ation they lack 

Everything's the same 

Back in my little town 

Nothing but the dead and dying 

Back in my little town 

Nothing but the dead and dying 

Back in my little town 

In my little town 

I never meant nothin' 

I was just my fathers son 

Saving my money 

Dreaming of glory 

Twitching like a finger 

On the trigger of a gun 

Leaving nothing but the dead and dying 

Back in my little town 

Repeat and fade: 

Nothing but the dead and dying 

Back in my little town

i had pain, spasm, and depression problems, all complicated by another series of dreams about the beginning of school -- this time, i got to be, both alternately and at the same time, student and teacher, élève and professeur.  the last episode of my oneiric creations had me slicing tumors as some sort of biology lab assignment, except that i fell asleep in the middle of the session and woke (in the dream) to find my face half glued to the black lab table by all the tape covering the eye guard on my weeping, pussy right eye.

i took this as a sign to get up, pee, take pain meds, morning meds, and suck on a couple of hard candies, as my blood sugar was a tad bit... low.  i also put in every eyedrop i could identify as still being on the eye drop list.  then i went back to bed.

later, truly up, doing domestic duties, then checking in on the world, i went feral.

fred, doing one of his domestic duties, ran off to buy groceries, including an alarming amount of mushrooms, despite the fact that we have, on hand, a considerable amount already.  for some reason, this sent me from a feral state that i'd been able to mask as a result of physical discomfort, into pure bitchiness.

while he was gone, i'd had a long talk with the two male cats making out at a dangerously close distance to my feet.  they were close to blushing as i took in their coziness... but i explained that homosexuals were some of my best friends, and if the pope, el papa, himself, could say, "who am i to judge?" -- well, then it was official.  their sexual orientation and lifestyle was none of my concern.

they looked hugely relieved but made the mistake of assuming that i felt like hanging out.  so when i rolled into the kitchen to do dishes before the arrival of fred and the foodstuff, they followed.  GETTING IN MY FREAKING WAY.

so a new ditty has broken out.  they are going to hear it frequently:
"it's okay to be gay, but it's not okay to get in my way."

try it in your life.  i'm sure you have some analogous situation to which it applies.  maybe a co-worker who is a lesbian but is always using your paperclips.  or maybe you are gay, and someone is blocking your access to the mr. coffee.  it's a great little ditty.

In my little town 
I grew up believing 
God keeps his eye on us all 

fred is sharp.  i think my pheromones shift when i go feral, and then pure bitchy.  we unloaded groceries, found a place for all the mushrooms to lay their little caps, stashed the two kinds of taters and the three kinds of onions, my damned yogurts, and then each retreated, rapidly, to our separate corners.

none of this, none of it, has anything to do with fred.  he just catches it because he is here.  and because he is sweet.  and because i trust him.

with a wariness born of 23 years experience, we emailed each other from each end of the mansion. i'm hanging out up in the computer turret, watching episode after episode of the wire, a show i still miss.  and it suits my... mood.  i still think the opening scene of the first episode is one of the most brilliantly written ev-ah.

snotty booger.  that's the name of the kid who is the first casualty of the series, set in west baltimore.  snotty booger.

anyway, i figured fred deserved something of an explanation for my crappy attitude, and since i don't dare share any of his emails -- his are so pithy and perfect as to be worthless to my blog (he's no fool) -- here's my first one.

it's not that i think my emails are breath-taking.  i want to make a point.  i want you to understand my point. AND i want my point to become the first rule of this blog.  i will highlight (underlight?) the aforementioned point in red so that you won't miss it and therefore, you won't be the first to break the RULE, should we ever correspond.

punishment for breaking the rule?  extrajudicial execution by forced over-consumption of wild, unwashed, psilocybin mushrooms -- i don't know how to spot a psilocybin mushroom, but there are over 200 mushrooms that produce the blessèd stuff, so i ought to hit on something when i go a-shroomin'.

and by the hell way, TW, are you out there?  i sent you a card and it got returned.  "no such number." i KNOW i got the number right this time, mine brother, so what the fuck is going on between you and the postal authorities in your neighborhood?  i need you.  i have always needed you.  i need bobby, too, but sense that he, par contre, does not need me right now.  the overwhelming feeling is that i am one useless piece of severely damaged crap.

okay, so here is the email, edited so as to make The New Rule (the only rule, actually) POP:

hi ya.
thanks for shopping.  i am looking forward to some mushroom creations.  good things, mushrooms. 

so... if you go to the xfinity homepage, one of the things they feature (it changes every few seconds, but it's there) is an ad for the hbo preview weekend.  let me know if anything leaps out at you as something you'd like taped. recorded.  saved.  whatever the hell it is we do now in the preservation of electronic media entertainment. point and click, copy and paste, shred and reset. i realize you get most of their holdings through netflix anyway, so you may wish to look just for newly released movies... i dunno.  don't care.  i've got my new pirate eye patch and am gonna watch every damned episode of the wire... to sustain my loving, cuddly mood throughout the weekend.   

the vision in that eye is going, going, going, and it throbs.  my right shoulder is barking, as are both hips, and the thermometer mocks me with extra fast beeps.  if that motherfucking bacteria has taken hold of the lens in that eye, well, you may have to go ask abbot truffatore if you can borrow his 9 millimeter. 

we really have everything covered, between you and netflix, me and xfinity. hulu. the bazillion stations we don't watch.  this is wretched excess and sickening indulgence, isn't it?  you, of course, have the cream of the crop. me, i love watching stuff over again.   

because i have mushrooms growing in MY head!  not only have we cornered the market on white button mushrooms in all of tête de hergé, and cornered them in our refrigerator, of all places, but i have other species sprouting at a phenomenal rate between my buddha-like pendulous ears. 

i have decided that i don't know shit about syria.  i don't know shit about shit about what would happen if we do this "without boots on the ground," limited, precision strike. 

 maybe the u.s. would get attacked by iran and iraq.  maybe the israelis would go to war.  maybe russia and the u.s. would tangle 

did you hear? putin is putting his own "assets" in the region 

but you know what i don't ever want to hear again -- not in the rest of my lifetime?
i don't want to hear a sanctimonious "never again!  never again!" -- not from a holocaust survivor, not from someone beat down during the civil rights' movement, not from a bra-burning, abortion-denied feminazi.   

i believed in "never again." 

like i said, i have mushrooms growing in my grey matter.

*

love,
profderien
anarchist extraordinaire, former socialist (as of about an hour ago)
friend of françois hollande, lover of liberty fries,
but doubting barack obama more by the minute

* ILLUSTRATION CREDIT:  actually, the artist claims they are jellyfish.  but they look like mushrooms in my head to me.  and whose blog is it, anyway?

© 2013 L. Ryan

Pop & Hiss: Isolated Vocals and Instrumentals

The LA Times Music Blog, Pop & Hiss, pointed me to some wonderful minutes of musical happiness this morning.  There's a treasure trove of isolated vocal and instrumental tracks taken (somehow) from Beatles master recordings that have been uploaded to YouTube.  I could go on and on about my favorites but as I haven't yet listened to them all, let me just signal that they were, and now are again, great -- to my mind.

There are moments when each of the Fab Four emerge as a wondrous vocalist, masterful musician, as a leader of the band -- and the insight into the construction of their music is just plain cool.

The only trouble here is due to a lack of musical knowledge to begin with -- for instance, I read the comments raving about Paul's isolated bass line, and so I listen again, and... am whelmed into boredom.  It goes without saying that I don't play the bass guitar, but it also should be noted that I'm not so dim that I don't recognize a great bass guitar performance.

Okay.  So a great bass guitar performance has to have a single-mindedness midst what seems, by comparison, a babel of catchier noise.

Still.

There is a comfort, though, in not being in agreement with YouTube commentators.  Such a fun crowd of open-minded thinkers, raised, one and all, on the tenets of Emily Post.  I admit that something comes over one... something along the lines of "well, yes, actually -- if Billy decides to jump off the bridge, that may top off my decision to take the leap, too."

Anyway, go to YouTube and search "Beatles isolated tracks." It's one more shot at the Magical Mystery Tour.  Just don't read the comments.

© 2013 L. Ryan

Love Your Freds

Bodiam castle (as you will remember, Marlinspike Hall will not photograph)

It really has been a quiet day in the neighborhood, here, as you will no doubt recall, in the region west of the Lone Alp, the central geographic point of pride (on the elevated, hoity-toity altitude side of things) in this land of Tête de Hergé.  Older, more faithful readers, also known as The Most Belovèd, will remember that the entire name of my country is Tête de Hergé (très décédée, d'ailleurs).  For those francophone grammarphiles whom I have kept so busy, lo these past five years of blogging, please remember that "décédée" agrees, in gender and number, with Hergé's "tête," and not Hergé, himself.  Yes, I realize that both the "tête" and the tête's owner are dead, and probably at the same time and place, and that while my choice might seem arbitrary, or, God forbid, redundant, I do not agree. Of Hergé, I only have interest in the tête.  It may have sparked a Holy Spark one nanosecond after Hergé's heart's last beat and final flop.  In fact, I'm sure it did.

So, yes, we're in the hilly but essentially flat western plains, but in an area very difficult to chart.  Many a cartographer has given her life in efforts to plot our location so that Map Quest and other tracking devices might narrow down where, precisely, I am currently sipping my cuppa Italian roast.  No one seems to much care, but probably the second most cited point of geographic pride in Tête de Hergé is located on the Haddock family's ancient home - that's right, right here!  I speak, of course, of the lowest altitudinal touristic draw of the land:  our own Marlinspike Hall moat.  Rife with what I call mole holes in the space-time continuum (figuring them to be larger than your average worm hole, y'know?) -- and I make that assessment with the full approbative force of the accredited Seal of Support of Star Trekkers behind me -- our moat serves as the docking port and sporting marina for the world's entire fleet of miniature and super-miniature submarines.  I figure we're kinda like a Deep Space Nine station but on terra firma.  Though I guess terra firma won't fly in this context.  Good luck parsing this post, either for its pristine grammar or its fuzzy logic.

Kirk, making the Vulcan salute: How many fingers do I have up?
Dr. McCoy: That’s not very damn funny.
-Star Trek III: The Search for Spock

Yesterday, I can at least be confident in saying, put me on edge, such that I don't much care where you think I am or whether your car's GPS has a clue about whether to go straight, turn right, left, or make a U-turn,  In fact, if we could make the rest of the neighborhood temporarily disappear to some pleasant spot, warm but with a cooling breeze, with beaches on the east and woodlands on the west, and s'mores everywhere there is a hypnotic bonfire, along with wine coolers shaded by tiny paper umbrellas and chunks of chilled fruit speared on toothpicks, with prosciutto-wrapped cantelope taking up a third of every silver tray -- well, that would be nice, too.  I hate to say it, but we've a daring, overly-friendly new neighbor two manors and one castle down the road who appears to be doing a bang-up business dealing drugs.  Or maybe he is the new rarefied gourmet salt door-to-door distributor. Celtic salt, sea salt, kosher salt, sour salt (citric acid), mineral salts, epsom salts, pickling salts. He strolls, cheerful and with deep-breathing good health, up and down the country lanes, phoning and texting and exchanging little baggies of white stuff -- small salt samples -- with random car drivers who impulsively stop to chat with him about the prospects for pork belly futures and which salt is currently number one on the salt list, in exchange for which they stuff sweaty balled-up bills into our smiling neighbor's now empty palm. In between chats with out-of-the-region tourists nervously eyeballing The Manor, the Cistercian monastery, the remains of the organic pig farm (wild and extremely organic hog gangs) and perhaps contemplating a tour of the Animal Husbandry Museum, our new neighbor chats and gives salt samples to the seasonal workers that stream into the area this time of year from Pieds de Hergé, our sister territory.  Thus far, he's not crossed the drawbridge to knock on our bronze replica of the florentian Baptistry doors, which makes sense.  Doesn't it?  What self-respecting medieval-slash-renaissance manor kitchens would be caught cuisining without a dozen varieties of salt readily at hand?

And then, there's my eye.  Specifically, the right one.  My right, not your right.

I have had to patch it again, due to excess tearing and what we will term "fogging." My pressures yesterday were again remarkably good -- 14 in both eyes. I had lost a little acuity in the right eye, but what worried me more was the discomfort, and the weird... I don't know... little slash of light that hits sometimes on the periphery.  Plus it looks like I am weeping and will never stop!  And I am not, I swear.

And yeah, that Saran Wrap over the orb feeling had returned.

So when the tech -- whom I love -- gave me the instructions for the next week, in terms of drops, I was relieved to see that we were "progressing," that the right eye was done with drops and the left was now going to start tapering.

Then the doc came in and did her more in-depth eyeball exam thingy, which included an announcement that " [my] body is doing its thing and having an exagerrated inflammatory response, particularly in the right eye." What is weird to me is the timing.  It did fine the first two weeks only to start this revolution at the end of the third week?  Then the doctor said that she considered "the first operated eye" as providing the road map for what the second will do, so she expects it to flare up in the third week as well.  So I am back to being one-eyed at the moment, but lacking my much beloved pirate patch, as Buddy ate the elastic.  No, not entirely.  Just nibbled it so that it was in three pieces and unusable.  So I am using these flaky stick on bandaid-type affairs.  Fred has drawn something on this one, but I keep forgetting to look in the mirror to see what is making him guffaw every time he looks at me.  It's always something.

So you will please excuse this backslide into "catastrophic thinking," an attribute I love to point out when taking other people's inventory (Sea from Phoctor Dill's website comes immediately to mind).  I am scared that an "exaggerated inflammatory response" will turn into an infection.  You know, of the biofilm variety and all that.

There, I said it.  The same crap that is in my bones/joints/prostheses has found its way into the windows to my soul.

Or is that a little over the top?  It just CANNOT be.  It WILL NOT be.  It couldn't have happened this quickly, one.  And, B) I REFUSE to allow this to happen.

Add to the catastrophic mode of thinking the fact that we stopped the Vigamox -- the freaking antibiotic drops!  I still have the oral antibiotic, which I've never stopped, I don't think, even once, in the last three or four years.  (That's a whole other post, entirely, as I've questioned the wisdom and reasoning behind that decision as well!)

Well, there.  It took me a while, but I spat it out.  Um, a little Windex and a paper towel will probably get that off your screen.  Oops.

[For those of you who are Fred fans... He's having his own version of a bad day, but I hope it's interspersed with moments of light-heartedness... such as drawing goo-goo eyes on my eye patch.  He's also working on another painting, which is fascinating to watch, as he's good as well as thoughtful and with a surprising sense of play.  But it can't be denied -- he's sad.  Fred has his own life, you'll probably not be surprised to learn, and has not the support he deserves, which also will not surprise you.  I long to give it to him and I fall short with remarkable consistency.  I want to envelope him in peace and laughter.  More than anything in the whole damn world, that's what I want.  I, me, me, my.  Sweet Fred...]

Everyone out there, whether you are new to these Tête de Hergé digs or old hands at this Tintin Tribute Land, and hum je ris de me voir dans ce miroir when showering, make sure to love your Freds.

Even if, maybe, your Freds don't love you in an equal commodious return: Love, cherish, your Freds.

Ethiopian Sky

© 2013 L. Ryan

Take Ten

despite the current extreme funkiness of our world weather patterns, which have left some of us tired of rain, no one, i believe, denies the calming, trustworthy, mildly wild nature of the sound of falling rain.  it means something to us.  it's -- at least -- permission to be set apart;  it's -- at least -- permission to share shelter, be it a tent or a worn quilt.

a tip of the hat, once again, to TW at american idyll.

take ten minutes now, or bookmark it for some future arid day.

All Praise Open Access Research: Frontiers in Human Neuroscience

This Open Access research article about CRPS addresses something that I know I've been loathe to bring up, as one is never sure where the gentlemen and gentlewomen in the white suits and hand-tied butterfly nets might be hiding.

Before we launch into "Evaluation of a prototype tool for communicating body perception disturbances in complex regional pain syndrome," let me confess a few instances of my own body perception disturbances. Supported solely by mine own vision, mine own touch, mine own spatial orientation.  I think you'll see why it's not something one wants to bring up in front of a well-educated, middle-of-the-road Republican physician.  I might mention it to my Hawaiian-shirted, Birkenstock-wearing, droopy-shorted whiz-kid of a neurologist, but then he makes book on my degree of CRPS-induced insanity...

Okay, so you may have noticed a few posts where I blithely inquire: "Where are my legs?" -- and other such nonsensical tripe.  True enough, sometimes I cannot locate my legs.  Lately, that hasn't been the problem so much as determining which leg is which.  The same is true with mine hands, these things called "hands" solely because they hang at the end of what are clearly forearms.  Ah, but left hunk of hanging ham or right hunk of hanging ham?  It can be a dilemma.

Then there are the days where my feet appear to have been surgically shortened.  Days only outmatched by times when my left hand (only the left -- at least I think it is the left!) takes on the appearance of a lobster claw.  Gone are the four fingers, in favor of a large pincer.

About half of the time, my feet perceive the solid floor, of whatever material, be it carpet, hardwood, over-waxed '50s linoleum, Carrara marble, the black volcanic sands of the Big Island, or a red dirt road, as water. Burning, shifting, untrustworthy water.

You probably don't entreat your limbs to do things -- no, you, the imperialist, the chef, the head of the gang, you just go around all Jean-Luc Picard-ish, barking, "Make it so!" in a slightly effeminate, yet headily masculine confidence of which we are all, thank you, quite tired.  Me?  "Please, Right Foot, if you're willing, if you're able, could you swing a bit to the left, as when you insist on going right, that puts my little toe in contact with the arm of my wheelchair (illegally parked bedside) and causes enormous pain. In return, I promise to postpone this afternoon's scheduled Do-It-Yourself Amputation (with both artichoke and white bean dip!)."

In any event, you learn, after eleven years or so, not to bring this shyte up in the presence of anyone deemed forensically qualified to gauge your mental health status.  Deep, gloomy, suicidal clinical depression -- shoot, I'll confess that in a heart beat.  That we could have Surf 'n Turf for dinner simply by collecting stray bits of feet and chopping off my left lobster claw?  Not so much.  Such is life with CRPS, but no one is going to tell you about it...  This post will self-destruct five years to the second after you finish reading this article so kindly put into Open Access by the Journal Frontiers in Human Neuroscience.

Frontiers is a community-oriented open-access academic publisher and research network.

Our grand vision is to build an Open Science platform that empowers researchers in their daily work and where everybody has equal opportunity to seek, share and generate knowledge.Frontiers is at the forefront of building the ultimate Open Science platform. We are driving innovations and new technologies around peer-review, article and author impact metrics, social networking for researchers, and a whole ecosystem of open science tools. We are the first – and only – platform that combines open-access publishing with research networking, with the goal to increase the reach of publications and ultimately the impact of articles and their authors.Frontiers was launched as a grassroots initiative in 2007 by scientists from the Swiss Federal Institute of Technology in Lausanne, Switzerland, out of the collective desire to improve the publishing options and provide better tools and services to researchers in the Internet age. Since then, Frontiers has become the fastest-growing open-access scholarly publisher, with a rapidly growing number of community-driven journals, more than 25,000 of high-impact researchers across a wide range of academic fields serving on the editorial boards and more than 4 million monthly page views.

Evaluation of a prototype tool for communicating body perception disturbances in complex regional pain syndrome

Ailie J. Turton¹*, Mark Palmer², Sharon Grieve³, Timothy P. Moss¹,Jenny Lewis³ and Candida S. McCabe^1,3

• ¹Faculty of Health and Life Sciences, University of the West of England, Bristol, UK
• ²Faculty of Environment and Technology, University of the West of England, Bristol, UK
• ³Royal National Hospital for Rheumatic Diseases NHS Foundation Trust, Bath, UK

Patients with Complex Regional Pain Syndrome (CRPS) experience distressing changes in body perception. However representing body perception is a challenge. A digital media tool for communicating body perception disturbances was developed. A proof of concept study evaluating the acceptability of the application for patients to communicate their body perception is reported in this methods paper. Thirteen CRPS participants admitted to a 2-week inpatient rehabilitation program used the application in a consultation with a research nurse. Audio recordings were made of the process and a structured questionnaire was administered to capture experiences of using the tool. Participants produced powerful images of disturbances in their body perception. All reported the tool acceptable for communicating their body perception. Participants described the positive impact of now seeing an image they had previously only imagined and could now convey to others. The application has provided a novel way for communicating perceptions that are otherwise difficult to convey.

Introduction

Changes in body perception can occur following peripheral injuries, or central nervous system damage (Halligan et al., 1993; Fraser, 2002;Moseley, 2005, 2008; Lewis et al., 2007; Antoniello et al., 2010). However communicating altered body perception can be challenging for patients and assessing the changes over time is difficult for clinicians. The purpose of this project was to develop and evaluate a digital media application for communicating changes in body perception with a view to providing a useful tool for clinical practice. To achieve this aim, we required a model condition where body perception is significantly altered. Patients with Complex Regional Pain Syndrome (CRPS) provided the model for this proof of concept study. Altered body perception is commonly experienced in CRPS and has been well described (Galer and Jensen, 1999; Förderreuther et al., 2004; Moseley, 2005; Lewis et al., 2007).

Complex regional pain syndrome is a chronic pain condition of unknown etiology that usually affects a single limb. It is a syndrome that involves multiple systems with aberrant changes in vasomotor function, inflammatory mechanisms, and cortical processing (Marinus et al., 2011). These changes are probably triggered initially by a peripheral insult, but the condition quickly evolves into a centrally driven disorder for which there is currently no cure (Jänig and Baron, 2003; Marinus et al., 2011). Alongside severe pain, sufferers experience difficulty in moving the limb, disturbed proprioception, and somatosensory registration (Harden et al., 2010). Although their sensory discrimination is impaired there is often extreme hypersensitivity and painful reactions to everyday sensations such as the touch of clothing (McCabe and Blake, 2008). The limb is experienced as feeling hot or cold and other disturbances to their autonomic nervous system lead to visible changes: the limb may appear discolored with shiny skin; it may be sweaty or become more or less hairy than usual and there may be swelling. Although these changes have an impact on the appearance of the affected body part, people with CRPS often describe distressing changes in body perception which are different to the objective appearance and physical properties of their affected limb (Moseley, 2005; Lewis et al., 2007; Peltz et al., 2011). For example, a person with CRPS may describe dramatic enlargement of segments of their limb, or report perceiving sections of limb as missing. They may experience the affected limb as feeling very hot, when it is in fact cool to touch. These perceptions are usually accompanied by strong negative emotions toward the limb, which can include a desire for its amputation (Lewis et al., 2007). People with CRPS have reported they find it hard to talk about their altered body perceptions to clinicians as they do not match objective signs and they fear being disbelieved. They find it more difficult to articulate aspects of altered body perception than to describe their pain and fear being regarded as mad and having their experiences dismissed as psychosomatic (Lewis et al., 2007). Such difficulty in communicating altered body perceptions may further exacerbate their distressing emotional impact.

Currently CRPS patients are typically asked to give verbal descriptions of their body perception in clinical interviews or if using the Bath CRPS Body perception Disturbance Scale (Lewis and McCabe, 2010). These verbal descriptions may be used by the clinician to produce a drawing or patients may be asked to draw a self-portrait (Moseley, 2005; Lewis et al., 2007;Lewis and McCabe, 2010). An example of a clinician’s drawing from a patient’s description is given in Figure 1. Although the use of drawings enable patients to describe the nature of the experiences these methods are limited by individuals’ capacity to articulate and draw well enough to adequately represent the altered body perceptions. Digital media provides a more suitable method for rendering the sensations described by people with disturbed body perception. This was demonstrated by Alexa Wright’sAfter Image project which dealt with the experience of people with amputations who experienced phantom limbs (http://www.alexawright.com/afteripg.html; Halligan, 1999). Wright manipulated photographic images of amputees to fit their described experience. In another example manipulation of digital photographs was used to represent perceived distortion of the size and shape of the face experienced by a patient with Wallenberg’s syndrome after a brainstem stroke (Rode et al., 2012). In this case quantitative data to measure the distortion was extracted from the software. However photo software isn’t quick and easy to use in the clinical setting. It is limited to one dimension and is prone to unwanted distortion of background which could influence perceptions of scale. The use of new media also offers the possibility of developing a 3D tool that would more readily enable patients to describe the nature of their altered body perception.

FIGURE 1

Figure 1. Clinician’s drawing from description provided by participant 2 as part of the Bath CRPS Body Perception Disturbance Scale. Notes on the drawing are: “enlarged knee,” “enlarged instep,” and “calf muscle moved to side of leg.”

The aims of this project were to develop and evaluate an application that patients can use to create a 3D model of their perceived body image. This paper describes a usability and acceptability evaluation of the prototype 3D tool for communicating body perception in CRPS.

Materials and Methods

Specification of the Body Perception Application

The specification for the digital media tool was determined using data from a previous exploratory study of body perception (Lewis et al., 2007), and consultation with a person with CRPS. The specification was that the tool should allow manipulation of the scaling, position, and surface texture of body segments and to display absence of parts on a model. This included the ability to lengthen and shorten limb segments, to make them thicker and thinner, and the ability to change limb position even to anatomically impossible positions. Colors and textures were to represent feelings of burning, cold, rough, smooth, and lack of substance. Finally it was also considered important to be able to view the model or “avatar” from different perspectives: front, back, left side, right side, through 360°.

The first prototype of the application satisfied all these criteria from a software perspective. It allowed modification of an avatar to depict alterations in size, shape, color, or visible surface texture of multiple body segments. Its use with consenting patients admitted to an inpatient CRPS rehabilitation program for the purposes of this research was approved by the Local NHS Research Ethics Committee.

Recruitment of Participants

Participants were recruited from a tertiary referral service for those with CRPS based in the South West of England. Inclusion criteria were: a clinical diagnosis of CRPS (Harden et al., 2010), admission to the inpatient multi-disciplinary CRPS rehabilitation program at the hospital and be able to understand and express themselves in English. Patients fitting the criteria were given the study information booklet by a member of the clinical team and were asked to contact the research nurse if they were interested. Before participation patients were required to give written informed consent to participate if willing to do so. Informed consent was obtained from all participants and is securely archived according to local NHS procedures.

Procedure for Using the Application

Ten participants used the first version of the application in a single consultation with the research nurse. The nurse showed the participant the application, its capacity for altering length, thickness and position of limb segments, and the color and texture choices available for applying to the avatar’s body parts. She stressed that the illustrative meaning of colors and textures were for each individual participant to decide. Having demonstrated the scope of the software the nurse operated it in response to instructions from the participant to achieve a representation that was to their specification. For example in altering limb length she would ask the participant how long or short they wanted the limb segment to be; asking the participant to say when to stop the increase or decrease in length. Participants were asked to confirm they were satisfied with the accuracy of scaling after each manipulation.

Three further participants were included after modifications to the application were made. The avatar originally only allowed the manipulation of the hand as a whole; the ability to manipulate fingers and their parts was introduced, together with the facility to represent conflicting sensations such as “flames” and ice colored “shock” representing concurrent burning and freezing cold sensations. The starting screen for this second version of the application, and its menus for manipulating the avatar, is shown in Figure 2. The procedure for the 3 additional participants was the same as for the first 10.

FIGURE 2

Figure 2. Starting screen with options for manipulating the body perception avatar. Menus for moving body segments (height, depth, left/right, and rotate), scaling (overall size, thickness, length), for hiding segments and changing the view are on the left hand side of the screen. Menus for colors and textures that can be applied to selected body segments are on the right hand side of the screen.

Collection of Evaluation Data

Audio recordings were made of the participants using the application to allow interpretation of the images created. The recordings also allowed immediate reactions to the tool to be captured. Immediately after using it, participants were asked to complete a structured questionnaire which was administered face to face with the research nurse. The questionnaire had open questions to ascertain their views and experience of using the tool. The questionnaire was modified after the first 7 participants had completed the evaluation to include a rating out of 10 to determine how good a representation participants’ thought the created image was and to explicitly ask whether using the tool caused increased pain and distress (see Appendix). This version of the questionnaire was used with six participants.

Data Analysis

Images were saved anonymously to protect the identity of participants. Questionnaire responses were all given an anonymized study identity code. The questionnaire responses were collated and the audio interviews were transcribed. They were analyzed for their content to determine acceptability and usability of the tool under the following headings: (i) the ability of the body perception tool to represent participant’s experience, (ii) their reactions to using the tool, (iii) limitations and aspects for refinement.

Results

Participants

Reflecting the CRPS population, participants were predominantly female (10 female). Ages ranged from 24 to 64 years (median 54), and CRPS duration ranged from 6 months to 7 years (median 14 months). Ten had an upper limb affected and three a lower limb (one participant had both upper and lower leg on one side affected). The characteristics of each participant are listed in Table 1.

TABLE 1

Table 1. Characteristics of participants.

The Ability of the Body Perception Tool to Represent Participant’s Experience

The participants produced powerful images of the disturbances in body perception they experienced. Some examples supported with quotes of participants’ verbal descriptions are given in Figure 3. Participant identification codes on the figures, and given in brackets after quotes used in the text, relate to the participant numbers in Table 1.

FIGURE 3

Figure 3. Examples of images captured with participant’s verbal descriptions.

Alterations in scaling were common with participants feeling that limb parts were either larger or smaller than normal and these perceptions were illustrated on the computer model (examples are given in Figure 3). Participants liked the application’s ability to scale and distort body parts. However, 5 of the 10 participants tested with the first prototype wanted more detailed representation of the hands.

Pain and altered somatosensation were illustrated by the application of a single color or texture in the prototype. Participants reported liking the colors, particularly the fire effect which they used to represent burning pain. Nevertheless it was not uncommon for participants to report dynamic sensations, pins, and needles or contradictory sensations, which could not be portrayed in the first version of the software. Participants frequently reported an extreme burning sensation but this was sometimes experienced with a contradictory cold sensation in the affected region.

The electric shocks that go up and down it are obviously not there, so I don’t know how you could represent those sort of things. [Participant 6]

My hand feels as if it’s absolutely on fire and then if somebody touches it, it feels cold, and this pins and needles. I don’t know how to represent that. It’s like numb but I can feel it. [Participant 5]

Regarding the avatar, participants liked the facility to view and manipulate it from different perspectives. Some participants, though not all, liked the fact the manikin was not portrayed as a human; preferring the impersonality of the schematic figure.

Interviewer: … at the moment it’s kind of a grey figure I mean are you happy with that, do you think it would be an improvement to make it look more human

No, because it’s not, it if were more human it’s going to be a more direct personal thing. [Participant 3]

I think it’s kind of better you don’t feel as pushed as if maybe you saw like a human being. [Participant 1]

It probably would be better if it was more of a human form because at the moment it’s very robotic looking. [Participant 6]

Participants’ Reactions to Using the Tool

In response to the question “Did you find using the body perception application an acceptable way to communicate how you view or feel about your limb or body parts?” All participants reported using the tool was a good method for communicating their body perception; both for themselves and for helping the clinician to understand patients’ body perceptions. The last seven participants were asked to rate out of ten how satisfied they were with the images they created: three gave a rating of 7, one 8, one 9, and one 10. All participants were unanimous in the view that using the application was better than the standard interview about body perception experienced earlier in their admission. They appreciated the application was much more adaptable than a clinician’s sketch. They found the application easy to use in consultation with the research nurse. One participant commented that they felt the process of the consultation with the nurse led to a more honest representation than might have resulted through independent use of the application.

I don’t think for myself it would work if I were expected to use it, but I think getting somebody else to do it, you can explain more. I think that if I did it I’d perhaps not be quite as honest as telling you about it. I felt more honest being open with you and telling you exactly what, I sat there and I did it I might have made that little bit smaller but that’s exactly how I see it. [Participant 8]

Some participants expressed the idea that the image made them realize the extent of their altered body perception. Some participants expressed surprise at how they were able to depict their affected region using the system and at their own reaction to seeing the representations they created.

It was like quite bizarre seeing a picture of how exactly I felt as a person, cause I’ve never had that opportunity of looking at that like that … for me as I say to visualize that’s how I feel. I felt a bit emotional, but the more I’m looking at it, it’s only because I’m sitting here thinking that is exactly how in my mind’s eye what I look like, so it was a bit of a shock I suppose. [Participant 8]

This is much more true to life, I’m not saying I’m going to have a panic attack but this is making me think a lot more about my hand than any talking about it. [Participant 4]

It makes you see how distorted your vision of your own body is, of your limb especially. [Participant 6]

In your head I haven’t said this word but I’ve felt this, you feel freakish, so you look at that and you think yeah that is how I feel. [Participant 2]

Pain may be increased by dwelling on the affected body parts (Lewis and McCabe, 2010), so the last six participants were asked if using the tool increased their pain or distressed them. Two instances of increased pain were reported.

Interviewer: Did using the tool change your pain in any way?

Participant: To be honest I know this is going to sound crazy probably but my hand is absolutely killing me; I don’t know why. [Participant 8]

The same participant reported that though she didn’t like it, she was not distressed and there were benefits.

No, I don’t think I’ve got a bad feeling from doing this, it’s not a bad feeling it’s just to me looking at that puts it into perspective what I’ve got. It’s just I don’t know how to explain it. It looks in human form exactly how I feel and I’ve never had that. I’ve sat and said this hand feels longer and feels wider from there. I know how I can see it but this is the first time somebody else has. [Participant 8]

Limitations and Aspects for Refinement

Main limitations of the prototype identified by the first 10 participants were the lack of detailed representation of the hands and the lack of ability to represent more than one sensation in a single body or limb segment. Program modifications allowing finer manipulation of individual fingers and additional surface options to portray conflicting temperatures and shooting sensations were made and version 2 was tested on the three last participants. All three used the refinements to fractionate the hand and the additional textures and found them to be acceptable features (for an example see Figure 4).

FIGURE 4

Figure 4. Image produced after additional features were added to the application: particle texture effects and fractionation of digits.

Other suggestions, not yet implemented, were to add in a representation of the sensation of compression of the limb segment and animation of perceived movement or tremor.

Discussion

This is the first time CRPS evoked disturbances in body perception have been captured in such a graphical manner. The quality of the graphics enhanced the reality of the image thereby helping participants to fully convey to themselves and others how altered their bodies seem to them. Participants described the positive impact for them of now seeing an image of a limb that they had previously only imagined and could now convey to others. The experience of viewing the image resulting from their visualization elicited some interesting reactions. This was apparent in the surprise that was often expressed and in the pain experienced by some participants. These reactions to visualizing body perception are not confined to use of the body perception tool. It has been reported before when mental visualization was used to help patients to verbally describe their body perception (Lewis et al., 2007). Constructing an acceptable representation on the screen provided a more powerful and adaptable means to communicate body perception than the use of drawings and may also provide a method to help patients to accept the conflicting perceptions of the body they experience.

A limitation of the study was that consultations with the research nurse and the administration of the questionnaire were not completely independent of the application’s developer. The software developer was present (with the consent of the participant and approval of the Research Ethics Committee) in many cases. This was because he wanted responses first hand and initially it was to help train the nurse in using the tool. This lack of independence in the evaluation could have led participants to be more positive about the application than they might otherwise have been. However both the nurse and the software developer stressed their desire for the participant’s honest opinions in order to establish the acceptability of the body perception application to patients and for identifying aspects that needed to be changed.

Areas for improvement to the application were identified, for example animation of perceived involuntary movements and creating more sophisticated depictions of sensation. However future use of the application needs to be considered before adding greater levels of detail and complexity. With increasing use of telemedicine, future versions of the application could be made to enable the software to be used by patients independently of clinicians in their own homes over the internet. The participants tested seemed to like using the application with the nurse; perhaps because it was new to them and may have appeared complicated. One of the participants even expressed the view that she was likely to have been less honest if she had used it on her own. However with the increasing use of finger activated tablets development of the tool using touch screen operation that is intuitive and user-friendly is important for its future development. Manipulation using finger drags and taps to turn the avatar, enlarge and shrink parts, and drop on textures and color will need to be robust for use on these smaller screens. The operations will have to be easy to complete with the non-dominant hand, since in some individuals their condition will have affected dexterity in their preferred hand. Further careful evaluation of independent usability and comparison of results between methods of delivery will be needed to determine reliability.

There is also further work to do in exploring the best form of the avatar for patients to represent their disturbed body perception. Previous research using body image morphing techniques with fit healthy people and with obese people has indicated that body perception is influenced by the form of the image presented (Stewart et al., 2003; Johnstone et al., 2008). Our participants with CRPS expressed mixed views of the anonymous gray avatar with some participants preferring its impersonal nature. Preferences for the human-likeness or individual’s likeness to an avatar may be influenced by age, culture, and emotional resilience (Walters et al., 2008). People with CRPS may experience increased pain or distress when using the tool if the avatar is created to look very like them.

Further development and evaluation is in progress to determine the use of the body perception application with people with stroke. A significant prevalence of phantom limb in the form of postural illusions of limb position has been found in people with stroke (Antoniello et al., 2010). Assessment of body perception is not routine in clinical practice but strong similarities in clinical presentation (i.e., motor and sensory and spatial cognition impairments), and in the findings from studies of cortical changes between CRPS and stroke suggest that some common disturbances in body perception may be found (Acerra et al., 2007).

Since there is potential to “repair” distressing body perception using rehabilitation interventions (Flor et al., 2001; Flor, 2002), it is conceivable that digital images of body perception could be used, not just for communicating body perception, but also as part of a treatment. Future versions of the application might allow virtual movements and sensory experiences and with the introduction of interfaces such as Microsoft’s Kinect, it would be possible to represent movements of individuals in ways that might affect their body perception or reduce their pain (Huang et al., 2006; Slater et al., 2009).

Another potential function of the body perception application is to quantify changes in predominant features in response to treatment. Other investigators have taken measurements of scaling from photo software. Vector deviations of image manipulations of a patient’s representation, relative to a reference photograph, were obtained to measure perceived size changes of one side of his face (Rode et al., 2012). The consistency of an individual’s representation of size on an image or avatar manipulated on a screen, as well as sensitivity to change in the patient’s body perception need to be tested. The reliability of scaling measurements extracted from the manipulated avatars is currently being investigated in a pilot study before testing in a larger sample. Pain and body perception are positively correlated (Lewis and Schweinhardt, 2012) and reliable measures of change in body perception might provide insight into mechanisms of interventions and the natural history of CRPS.

Conclusion

This proof of principle study has shown that the body perception tool provides a powerful vehicle for communicating and representing changes in body perception.

We envisage that this tool could extend beyond being a very useful communication device between patients and clinicians and also become a meaningful process measure and an interactive tool for intervention.

Conflict of Interest Statement

The authors declare that the research was conducted in the absence of any commercial or financial relationships that could be construed as a potential conflict of interest.

Acknowledgments

We are grateful to all the participants. This project received Start-up funding as part of the EPSRC-funded heat@uwe program (Grant Reference: EP/H000380/1). The project is entitled “heat@uwe: bridging the gaps in Health, Environment and Technology Research.”

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