Dear Crisis Intervention of Houston (Carbon Copy to the White House)

Source: JEZEBEL

Crisis Intervention of Houston is proud to be part of a new effort to help save lives through a partnership with the National Suicide Prevention Line Network (NSPL) and the White House.

In January 2009, the Obama Administration initiated a process for the public to voice concerns directly to the White House via email. This resulted in an outpouring of emails from thousands of individuals whose concerns ranged from financial and food assistance, to medical insurance. Some of the individuals who contacted the White House expressed thoughts or threats of suicide. 

In response to the influx of calls, the White House asked NSPL to provide follow-up calls to individuals identified as potentially suicidal. As the Region 6 Center for the National Suicide Prevention Line, Crisis Intervention of Houston is providing follow- up telephone calls, emails or mail to potentially suicidal individuals identified to be living in Houston or the surrounding area. 

Crisis Intervention of Houston is assisting in this effort by contacting these individuals and conducting a suicide risk assessment which requires some detective work and lots of patience. CIH's work is part of a progress report made by NSPL to the White House every week. 

We are proud to partner with NSPL and the White House as we continue to reach out to people in crisis and provide the kind of support that saves lives.

This may be the most humiliating post I've ever had to write.  But I do have to write it.  It is one of those truth-telling days.  The sun is out.  I conquered my phone phobia and called my Mom.  (Yes, I know, it is more of a Mom-Calling Phobia than an actual fear of the technology.)

I do need to say, in defense of any jerkiness in writing, or thought, that my left leg, hip, and lower back, are all conniving against the composition of this post.  There is screaming -- rhythmic, short bursts, nothing arduously continual -- involved, as the Spaz Attacks laugh in the face of 40 mg of Baclofen, 8 mg of Tizanidine, and a Kroger Diet Ginger Ale.

I am a true fan of President Obama, and of many of his policies.  We could do a rundown, but if you're a Dear and Dedicated Reader of this obscure and odd blog, that would be the height of boredom.

Yes, I am trying to avoid what needs saying.

I write the President, and with excessive frequency.  Possibly with excessive openness, perhaps with insufficient deference.  Weirdo that I am, I consider him a friend, especially in the middle of the night when the pain is winning and all of Marlinspike Hall snores in blissful slumber, from the few country mice in our myriad cellars and crags whistling midst dreams of artisinal cheddar wheels, to the Holy Abbot Truffatore, hiding from the heavy duties of his office at the Cistercian monastery, our closest neighbor, snoring with blessed abandon.  If I listen hard enough, sometimes even the muffled snuffling of the Crack Whore napping alongside the whispering waters of the moat reach my hyper-vigilant ears.

What better time to write the President of the United States?

Maybe it was the letter where I chastised the university system that studiously underemploys its many "adjunct," "visiting," and "assistant/associate" professors, denying them not just the oft-discussed tenure but the rarely referred to basic benefits of employment -- a living wage, access to health care, that kind of piddly stuff.

Yes, I bet it was THAT letter that did it, that put me on The List.  I probably said something like: I have deferred my plans for suicide because my brother Lumpy, the Professor, was diagnosed with an evil cancer, already metastasized, the bastard, dastardly enemy!  He had not had enough funds to purchase insurance prior to President Obama and Friends' pushing through the Affordable Care Act and setting up the MarketPlace.  So, by the time he had affordable health care... no thanks to the university for whom he'd labored like a slave for over 25 years... his first doctor's visit came with the ominous pronouncements of "tumors, masses, MRIs, referrals to oncologists." Just months before, he'd made his first ever visit to an ER, only to be treated as a drug-seeker, and told he probably had a rotator cuff injury.  Right.  Make that Metastatic Renal Cell Carcinoma.

So, it was probably that letter that set off the "suicide" risk alarm button in the White House Reading Room, where every letter to the President is closely perused.

Though it might have been any of the letters that tried to explain the frustrations of a "rare" or "orphaned" disease like CRPS, and the idiocy those of us with it are forced to confront in an often futile effort to get help.  I might have used the old chesnut of CRPS being known as "The Suicide Disease."

In any event, the dread telephone rang this morning, after the second night of Screaming Ninnies and ineffective 100 mcg Fentanyl patches, Percocets, Baclofen, and ibuprofen.  The ultimate proof of failure, and pain's triumph?  It bust down the gates of music -- It ran through Ben Harper, The Decembrists, Bonnie Raitt, Eric Clapton, The Band, Townes Van Zandt, Frank Sinatra, various timeless chorales, even knocking Nina Simone off her intimate stage.  Even the spunky Brett Dennen had his red locks blowing in the wake of the pain's wind. Damien Rice was left standing, but barely -- more of a stagger than a stalwart stance.

So I answered a call from a caller I did not recognize.

It was the Crisis Intervention Of Houston (Inc.) calling "on behalf of the White House."

No coffee in my system, but three cats attached to head, right hip, and square upon my chest, I thought, "Well, of course.  Who else would be calling this fine Sunday morning but some suicide prevention hotline on behalf of my friends in the Barack Obama Administration?"

The very nice person on the other end of the connection wanted to make sure I "had access to all the resources" I need.  Beyond a loaded gun, I assured her resources were to be had aplenty here in Tête de Hergé.

No, I managed to set aside morbid humor and reality just long enough to be completely mortified that my finely tuned letters to the President had set in motion, not the rectification of health care and employment injustices impacting human life, itself, but, rather, a concern that I really meant to perform DIY amputations after consuming scads of methadone washed down with the best of a single malt scotch.

So, a sincere statement of thanks to that wonderful woman who made that cold call, and appreciation to the Obama Letter Reader who put me on the Suicide Watch List.

Suicide is part of the daily routine when you live with this much unrelieved pain and disability for this long, and the only assurance doctors can supply is that the future will be the same, or worse. When you don't sleep nearly enough, especially in consecutive minutes.  When "hope" is a construct, and you spend way too much time comforting those you'd hoped might comfort you.  When your financial resources are destroyed, and your career made a laughing stock of a memory.  When you cannot even hold someone else's hand because it feels like an attack with Sand Paper Set Ablaze.  When you cannot talk about any of these things due to the fatigue of those few still around, trying to help.

And when the person upon whom you have dumped the most, with whom you have shared every detail of the journey turns out to be so damned ill, and so ill-treated?  To someone as weak as I am, lacking the stern moral fiber of my ancestors, suicide seems quite the viable option, and so is considered, daily.

But thank you, Crisis Intervention of Houston, and White House staffers, for caring enough to put me on The List.

Imagine the impact if you bypassed those such as me and called some of the suicidal veterans returned from multiple deployments?  Last I checked, 22 veterans a day kill themselves.  They don't endlessly whine, they don't "blog" it, but maybe they write their Commander-in-Chief now and then.

Like I said, this is the most humiliating post ever, and yet, in the intent of all parties is a desire to "do good," and to stop, or slow, the bad.

Dear President Obama...

© 2015 L. Ryan

guns and knives, okay.

i don't like that i don't like lili kershaw but hit replay like clockwork on three of her songs recently loaded onto my lifesaving musical device, now saving life in day's light as in night's, and losing efficacy as well as temporal dominion. maybe that explains lili kershaw and how she weaseled her way into my music.  lili kershaw is easy;  she calls it honest;  others call it young, and, irritatingly, folk for the 90s.  what is that supposed to mean: folk for the 90s?

still, i've begun thinking so much about guns -- knives, too --  because how can i be honestly engaged  in the nation's flippety-flappety social dialogue without getting intimate with a gun?  [fred scared the bejesus out of moi by offering me the actual knife featured in one of my short stories (penance: heaven's casting couch -- just published here, but old stuff). it's one scary mofo of a knife, but beautiful, in person, for it's clear intent.]  so, yes, guns are admissible in my imagination, now.  mark the date, and believe that old dog-new tricks thang.

i'm going back to the awake::asleep brainwave pattern that got me through the last 10 hours, if blessings for longevity hold on behalf of the magical musical machine.  also, say a prayer for my last sucky earbuds, and that the cats will refrain from the final thoughtful chew of its tiny, teasing wires.

stop.

take a moment of your life

to find out where you are going

and crawl

through the barren land

of your plan to the beauty of not knowing

and come on down to the place where we met

and i sent you that shot of whiskey

smoke was in your eyes

and your hair fluttered by

you were never with me

so pull the trigger nice and fast

cause the best for me hasn't happened yet

you're the marlboro man

predictable with your plan

you're so damn scared

you don't understand that

life is for the living

not the living dead

you make your bed

refuse to lie in it

life is for the willing

you're only willing to stick to the plan

go buy a pack, marlboro man

marlboro man

please don't get down on your knees

and act like you're repenting

i know you know i know you better than this

and i am done mending

what was meant to be a broken joke

get out of my house

go have a smoke

i'm on my way to wonderful

my future is bright

don't get blinded by the light

so pull the trigger nice and fast

cause the best for me hasn't happened yet

you're the marlboro man

predictable with your plan

you're so damn scared

you don't understand that

life is for the living

not the living dead

you make your bed

refuse to lie in it

life is for the willing

you're only willing to stick to the plan

go buy a pack, marlboro man

marlboro man

marlboro man

i counted the hours it took for you to call

and i counted those same hours

leading out into the fall

so pull the trigger nice and fast

cause the best for me hasn't happened yet

you're the marlboro man

predictable with your plan

you're so damn scared

you don't understand that

life is for the living

not the living dead

you make your bed

refuse to lie in it

life is for the willing

you're only willing to stick to the plan

go buy a pack, marlboro man

marlboro man

marlboro man

-- lili kershaw

An Appeal to Blogger ShadyNorma

This morning I woke with more neurological weirdness.  Also, much sadness, grief, brief flits of joy, and a massive jolt of paranoia.

Then there was the sensation fueling the need to walk fifteen feet to the bathroom with the sole aid of a beautiful, blue-flowered cane, and that undescribed sensation was quite near overwhelming.  You're welcome.

What could so dissuade a person in such a state of need?  Oh, come now.  You must be one of my unfamiliars!  Why, yes, of course, it was that indescribable, incomparable pain, swelling and SimultaneouslySadisticPain&Swelling&Crunching-of-Smooshy-Joints.

If you're an adept at English Language and Orthography in the Preferred Style of Concision?  First, you'd never be able to type THROUGH such agony as a pain management "distraction" technique, and B) you've probably left my blog site by now, having rewritten this entry:

She woke cranky, had to use the bathroom, but found it too painful to walk. In a display of writing weakness and abuse of the English language, she took to badmouthing her small imaginary audience. It is in this wretched state that we leave her for something worthy of copying to our Gratitude Journal, before we watch the afternoon stretch lazily before us as we scrapbook and down sweating pitchers of Gin-and-Tonic with a group of nattily-dressed undoubted girlfriends.

Stuck in bed, and with three cats stuck to me, I took half of my day's allotment of breakthrough pain medication (taking care not to die laughing) and said the magic words:  "I will begin to feel much better in 15 minutes, 30 minutes, tops." 

I also attempted to break free of the feline attachments, with about as much success.  Marmy hissed and reattached herself to the other hip. Buddy was kind enough to re-circumnavigate his perfect circle, this time without his huge tail poised upon my swollen knee.  Dobby purposely stepped on my shin in replicating Marmy's philosophy, giving me a well-timed very un-Dobbish glare.

It was two hours past their feeding time, and Dobby is on a diet.

Using the cane and two grabbers (for differing purposes), I retrieved the laptop from its sleeping position and wrestled it onto a pillow to approximate an extensive, flat lap. Eyeballed emails. In a check of Feedjit, I noticed yet another group of blog visitors to an Ochoa=Turd entry, one with a new comment.  

And off I went on a comment binge.  The Ochoa=Turd addition turned out to be spam -- quite appropriate. Then older comments hit my eye (ouch) -- as in, see the post previous to this one!

It's now many hours later, during which time, yes, I made it to the bathroom, and then to the wheelchair, then to my few morning duties.  Yes, yes, I fed the Feline Triumvirate and they proceeded to lose all interest in me until my return to bed.  But!  But  I also made Fred his beloved sheet cookies of whole wheat flour, honey, almonds, raisins, and oatmeal.  The seasoning and leavening recipe portions are, regrettably, proprietary.  In so doing, I managed to burn my effed-up right hand when I forgot that parchment paper WILL slide off of a cookie sheet if said sheet is being tossed in a hot oven at a very odd descending angle. Yes, I spent a good few minutes feeling stupid.
Then I tended Buddy's unique version of hairballs.  Yes, he managed to avoid most of the easily cleaned flooring in favor of a seagrass mat.  Yes, I was tempted to allow the impact of Time to make those two huge blotches blend in with nature's rug, but concluded that was just too gross.

Back to bed I finally made it.  My right foot was now huge, as was the whole lower leg and knee, but did I abuse my pain management agreement and take a second breakthrough dose of medication? No, I did not.  I finally remembered the now cold coffee I'd made, timed to be ready just a few minutes after the extrication of the granola cookie mammoth from the evil hand-searing oven.  The cookie was now fully cooled, as well.  So die the dreams of our early waking, when that waking is, however, late in the eyes of The World.

Needing distraction again, and the Marlinspike Hall Domestic Staff (Genetically Indentured), Fred, Bianca (and therefore Sven, on TWO counts lazing in!) -- all now with the addition of well fed cats strewn about The Manor -- continuing their snoozing...  It must be a Tête de Hergé National Holiday, as there are a bunch of new ones this year.  Happy September Eighth!

I took up the laptop again.  I'd left the browser open to the tab listing the massive blog commentary since its inception in 2008, and on an OCHOA=TURD post.  (How many of those trailblazing posts are there now?  How many courts have ruled him the High Idiot Poster Boy for Doctors, Insurance Companies, and Malevolent Employers in all things related to CRPS?  And how many people have died, wasted away, or otherwise have become useless souls because of his greed, his lies and his handlers' infamy?)

I found these two comments left by a Blogger named ShadyNorma, whose Blogger profile is now blocked, and by my BFF/alter ego Bianca Castafiore:

2 comments:

1. 
   shadynormaSeptember 19, 2010 at 2:56 PM

   I saw a doc at OHSU who wanted to send me to him, as she put it he is an expert on CRPS. Glad I did't go.
   
   I have had it for over 3 1/2 yrs.
   Got so sick of the Docs that don't believe, lost my job, on SS, and broke! Work Comp says if I have it its not bad enought to recognize. I have never never experienced pain like this ever! I have in both hands after having Carpal tunnel release. That doc was a comp Doc Too.
   
   There are many days I think about killing myself just to stop the pain. But at least at this point I can't inflict that kind of pain on my loved ones.

   
   
2. 
   Bianca Castafiore?September 19, 2010 at 6:15 PM

   shadynorma, have you ever been seen by a good neurologist? have you joined RSDSA.org? there is hope out there, and competence! insist upon it, would you, please?
   
   as for the idiots who don't believe it exists, or who owe their existence and souls to insurance companies and workers comp, frustrate them with calm truth -- they hate that!
   
   if you can, simply refuse to deal with them, because they are nothing but a waste of your time.
   
   i think of killing myself every doggone day -- but then, who would run The Manor, who would safeguard The Haddock Legacy?
   
   shadynorma, lay it on the line with your loved ones -- and band together to make the best of life. get that pain treated, develop a treatment plan, fill your life with distractions, and live on!
   
   please come see us again, and tell us how you are doing. if you can get away, we'll keep a suite in the east wing all spiffy and full of flowers, ready for you to spend a long weekend, or the winter...

   
   
   
   
   
3. ShadyNorma, I apologize for not chasing you down, chatting your ear off, listening to your story.  I apologize for not listening well, and not doing it repeatedly.
4. Because one of those first thoughts, mixed in with prayers for my brother GB, aka "lumpy," and for Kate, and for Brayden, was a Lament, a drawn out wordless moan, complaining at having to live another day in what I consider a life without quality.
5. Because, ShadyNorma, it's the phantom part of CRPS pain and spasms and swellings-unto-bursting and doctors/nurses who won't spend a few hours reading competent neurology, pain, and cutting-edge (O, for that cutting edge magic bullet mixed metaphor for cure!) research, rather than spouting a regurgitated source that was already dried putrid nonsense ten years ago!  It's that phantom pain that makes the people who honestly love and adore you have to walk away, to save their sanity, so that they can -- they and you both hope -- walk in again.

Because, ShadyNorma, this is the ONLY aspect of CRPS pain over which you have considerable control.  You can find answers for it, and with time and relentless application, achieve a measure of pain relief.  

I made a mistake about 2 weeks ago, after being admitted to the hospital for cellulitis in my right CRPS Type 2 (the old "causalgia").  I never claim a "10" on the infamous pain scale.  The scale is meaningless to me now, as I am NEVER below an 8, not really, and I reserve "the worst pain [I] can imagine" -- a ten -- for some unimaginable future.  So while being interviewed by the admitting nurse, I claimed a "9." This apparently triggered an automatic question on her handy-dandy bedside computer program asking about suicidal tendencies.  So used now to my former "team" who understood both the disease and my refusal to lie about suicide, I told the nurse, in what had to be an "inappropriate" affect:  "I think about suicide every day." 

I saw her whole body freeze.  Then I heard the follow-up question:  "Do you have a plan?"  In an appropriately serious tone, I answered, "No, of course not.  That's just a bad joke among people with CRPS." 

Too late.  My thoughtless honesty had "triggered" a psychiatric referral -- which thankfully never came. Someone, the charge nurse, I think, came in and explained that I'd set the big red ball rolling, and as he had some insight into intractable, long term CRPS, we worked that out.

ShadyNorma, the truth is that we can live through any physical pains, but when the people we HAVE to turn to when that pain becomes unmanageable show us deceit, disbelief, disinterest, and then give substandard, outdated "treatment," or no treatment at all as a result of that mindset?  Well, we are worn down and do become intimate with the seductions of suicide.

But you take that bazillionth cleansing breath, live through it (hopefully!) and tighten the circle of knowledgeable, up-to-date practitioners.  You try to get rid of your anger, or creatively vent it (are you blogging?), you honestly face suicide, probably daily, and by bringing it into the light, you defeat it.  Day by day.

You can contact me through a button on the left hand side of my Blogger Profile Page -- and I hope you will, as I care about how you are today, and what the past four years have been like,

1. 
   

© 2013 L. Ryan

Fred's Day

A repost from Memorial Day weekend 2011. Familiar themes and stories that 

can always bear repeating, and the times beg remembrance.

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

Raise your hand if you think Fred should win some sort of award for putting up with me. {hand::in::air}

He's a total stud.  Despite wrenching the good heck out of his lower back, he's mowed the Lower Top Forty, resurfaced the Simulated Wimbledon courts with fresh sod and made Topiary Master Works out of the boxwood hedges.  He even chased wayward cattle back through the cavernous hole in the rock wall, back over to the Monastery side of the apple orchard -- where he found Abbot Truffatore, bald pate a-dripping and a-shining, down on the scarred and knobby knees that perfectly bisect his bowed legs, working alongside Father Tom and The Tomettes, The Penitent Cohorts -- all of them scrubbing the Red, Red Rose Garden flagstones with toothbrushes.  Again.  Those Crazy Cistercians.  (It about kills me.  There's clearly a great story there, but The Boys weren't talking, insisting instead on the discipline of reverent silence -- The Kill Joys! And since Fred was more interested in wandering bovine than in what might've so humbled the Hoity-Toitier of The Brotherhood, that leaves me and my investigative reporting skills.  I'm on it!)

Even before finding Truffatore on his knobby knees, Fred and I have suspected something was amiss over in the Monastery-Down-The-Road.  They've yet to submit an application for a booth at the upcoming ManorFest, and -- tic toc -- time is winding down! The Abbot has only sought weekend refuge in Marlinspike Hall once thus far this year and that was, understandably, to avoid having to say all those celebratory guitar masses of Bin Laden's death.  He wasn't so much his usual trembling skein of misfiring nerve fibers as he was just plain old weary.  Guitar masses will do that to you.

Some are saying that the security of their biggest income draw (and center of their worshiping lives) -- The Holy Foreskin -- has been compromised.  Rumors abound that keeping it in a domed pastry tray was an idea born for trouble -- on the basis of humidity alone.  On the up side of things, Father Clem's doing well in therapy and nothing not meant to burn has gone up in flames for over 8 months.

Anyway... as soon as we decipher the Monastery's Mystery, you'll know.

Hey... It's Memorial Day weekend, and while for some of you lazy gits that means decorating the graves of the Confederate Dead, for me, it's French Open Time!  Yeah, yeah, yeah, died to protect my freedoms, way of life, whatever... but oh-h-h-h, wouldya look at that down-the-line backhand?!

No offense to Novak Djokovic, good citizen of Belgrade, but I need for him to step aside -- just for this tourney.  Given his early draw, that may happen.  (At least, it may in the sense of "On any given day..." -- a phrase that I never thought would recur so frequently in this godforsaken blog!) Yes, but given how incredibly hot he's been playing?  He may need to be brought low by a pinky blister that obligingly morphs into a pseudo necrotizing fasciitis.   I'm just sayin', Lord.  This was meant to be all about Nadal, not some clown who has managed to string together a mere 37 wins in a row...

And Borg, of course.  (Bjorn remains the only subject of sports photography ever to have graced one of my bedroom walls.  Legs, people, we are talking legs... and face... and scruffy little beard... Hmmm, I think a short Pause of Adulation is in order.  I once tried Borg's incredibly high tension on one of my own wood rackets -- let's just say that neither my shoulders nor my legs were able to exert any control over that action.  80 pounds of *ping* is hard to manage.  Remember that!)

I love tradition.  And Roland Garros, to me, should be Nadal's Place.  2009?  What about it?  Clearly, an aberration.  That was the year the lad was so confused about clothing.  Droopy drawers, muscle shirts, none of it exactly suitable to his body type.  (Maybe it was just the pants:  His butt was clearly too big for his pants;  He wasn't comfortable, and I squirmed on his behalf.) 

Everyone was confused.  New York Magazine noted that it was also the "year in which Federer's look tipped over into full-blown prissy self-parody." 

I don't have the energy to go there.  I am not a Federer Fan.

Today was the last day of qualifying.  Play begins Sunday.

I need the distraction.  Best form of pain relief there is, distraction.  I needed distraction yesterday!  That's when Fred really earned my gratitude, renewed my respect.  Never mind the chore of navigating the absentminded sort of traffic we get here in Tête de Hergé (très décédé, d'ailleurs), never mind his aching back -- he also had to listen to me fret, then had to sit in one of the more uncomfortable waiting rooms of our connaissance, and tolerate my tears.

I had a 1:30 appointment with the pain management dood at the world renowned catastrophic hospital for brain and spinal cord injury.  You know, the place with that weird statue out front -- a bronze of a kid in a wheelchair hoisting a javelin.  When we rolled past it at 4:30, on our way out, my eyes could barely focus.

I gotta say, though, that my opinion of Local Talent rose quite a bit throughout the afternoon.  Except, perhaps, my opinion of the absentminded drivers.  We kept encountering people who did not appear to be even conscious, much less alert.

I've only met with this doctor, in an official "appointment" kind of setting, once before -- the day I went a-begging for inclusion in their subanesthetic ketamine infusion program.  He gifted me with hope that day, and he gave that gift some renewal yesterday. 

To quickly review, I had two courses of infusions, for a total of six treatments.  They never really did anything and I've been pretty depressed about that.  Toward the end of the second round, I emailed Dr. Schwartzman, you'll remember, and found out more about the protocol in use at his Philadelphia clinic.  He was kind enough to issue an invitation for evaluation, with the added incentive of offering an "expedited appointment," as his schedule is full until 2013.  The invitation was not to show up and be treated, pronto presto, but to undergo evaluation.  The ketamine treatment would be deferred until... later.  Another trip, followed by other trips, as there are required "boosters."

I was excited and felt like maybe all doors were not closed to me, after all.  I can be so stupid.

My doc yesterday conducted his clinic according to a brilliant master plan.  As they escorted me down the hall and past all of the examining rooms, my head was swiveling to the left and right, and when ushered through the door to the Ketamine Room, I began stammering "No-o-o! I'm not here for Ketamine today!" They laughed and stashed me behind Curtain #4.  The doctor scooted between "rooms" on one of those dreadful rolling chairs.  The bad thing, and to me, a very bad thing, was that you could hear everyone's business.

[It was instructive, though, to actually get to hear a couple of drug-seeker spiels.  The stomach turns at the blithe story deliveries -- "Could you write a prescription for my husband?"  "Can you believe it?  I spilled a whole bottle of pills in the toilet!"  And always, there were specific suggestions of "[y]ou know what might work better?"]

I thought, Hmm, I can do that... With a twist!  So when he got to me, I pitched the idea of giving Ketamine another shot, but by a protocol as close to Schwartzman's as possible.  Then I sat back and waited to be laughed at, or condescended to, or whatever.

He was so nice, so amenable, so cool about it.  And I was left wondering whether it had always been just that easy -- people waiting for me to ask for what I want, people waiting for me to lead instead of follow?

Beginning June 13 and ending June 23, we've scheduled six infusions, all of them to be at least 200 milligrams.  In Philly, it would be ten infusions in twelve days.  Here, I'll get six in ten -- the most that they can fit in.  I am very, very grateful.

Other stuff -- he wants an endocrinology consult (adrenal failure, avascular necrosis, diabetes, Hashimoto's, Cushing's, and what not...) at one of the med schools, and also I'm to take a refresher course in biofeedback.
Like the first time we met, he pushed, and pushed hard, for me to give Prialt a try.  I was hoping that just refusing implantation of a pump would settle the issue (my way!) but then he came up with doing a couple of injections right into the intrathecal space as a sort of trial.  I told him I'd think about it... That's the best I can do.  If anyone out there can share some *positive* experiences with the Snail Juice, please do!

He could have made a longer list -- I'd do it all just to have this last shot with Ketamine treatment -- under a more rigorous protocol.  He did say something about my shoulders, something about bringing some "resolution" to that "issue."   Noted, but with a bit of an eye roll.  Like I haven't been trying for three years now.  Like they aren't killing me...

Speaking of killing me, he then engaged in dubious tactics that were responsible for the aforementioned tears.  I believe the conversation went something like this:

Him:  So... what will you do if the ketamine continues to fail, if there is nothing left to try?
Me:  {cleverly avoiding the question} That's why giving it another go is so important to me.  This is probably my last chance.
Him:  So... do you have a plan in mind for how to kill yourself?

Holy Mother of God, that was unfair.  Fred opined that it was a "Sixty Minutes" interview tactic -- you know, the one where they shift gears so fast that the engine falls out of the auto body... 

I was so pissed off at the question that I did the only logical thing and burst into tears.  I mumblemumbled something, don't remember what exactly, except for the inimitible "whose life is it anyway?" that fairly exploded from between my lips.

I probably told him that yes, I did indeed have a plan, didn't everyone? I might have mentioned that I consider suicide every single day, and have for several years.

For me, the day pretty much ended at that moment.  I would have liked it to, anyway.  Lots of paperwork ensued, and some creative scheduling.  Fred was pretty much not on my mind until I finally made it out the door and into that sucky waiting room (the clinic is held in the middle of this "catastrophic" hospital, so the waiting room feels very exposed and its furniture... unfriendly).  There he sat, head bent over his book.  The smile on his face when I finally showed up was precious.  So much so that I promptly dumped the contents of my purse onto the floor, because, of course, having him bend down to pick it all up for me was really a plot to work his cold, stiff back muscles.

He gave me permission to cry, and so I found myself laughing.  He reviewed the "60 Minutes" technique with me again, and had me howling.  Traffic was stop-and-go, even on the freeway, but we never seemed to get stuck.  We made up reasons for the Existence of Endocrinologists.  Without me mentioning my DIRE NEED, he pulled into the local Yogurt Emporium so that I wouldn't be bereft of the fermentation necessary to five months straight of oral antibiotics.

And the boy bought himself a nice bottle of wine, too!  (Don't your Yogurt Emporiums sell wine?)  He didn't get his usual buttery Chardonnay but a Gewurztraminer and Riesling blend instead. 

That was Fred's day (with me stuck smack dab in the middle of it).  A prize, an award, a hefty stipend, the man deserves something.

Physicists are killing the dream of suicide

Square, Cube, Tesseract
 "the tesseract is to the cube as the cube is to the square"

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

I'll be straight up with you, Dear Readers.  I've been suicidal.  No, not mushy-mushy "suicidal ideation," give your belongings away trite and tripe, but stone-cold "I feel nothing compels me to stop any longer" days and nights.  Because anyone with a bad case of CRPS for longer than, say, three years, thinks about suicide every morning they are unlucky enough to wake up.  Morning, afternoon, evening, whatever.  And three years is equally arbitrary.

This is when I'm supposed to tell you what stayed my hand.

Except that nothing has.  It hovers, instead, shaking in midair.

Not even the usual stuff could stop me now.  That being::  the accrual of sufficient funds to support Fred in his final years, as he winds and wends his way around the grounds of these grand Haddock Family holdings. That being:  teaching him (or Sven, Bianca, or maybe even the Cabin Boy) to clear the kitchen counters, do the dishes, and put everything back in its place once clean and dry.  That being: paying off my debts so that my departure is not the kerplunk of a tiny pebble in our moat, but the gentlest surface addition of a dandelion parachute and seed, a complement to the naturally accruing muck of the moat.  Only I would think to think "Ah, le futur du dent de lion..."  But I have been neither perennial nor herbaceous.

That being:  the desire to know how things turn out for my family members and the people who fell into my gnobby spider's web and became my friends.

The old concerns of the novitiate died with my solemn vows -- I don't care who has to find me, who has to do the cleaning up, who has to make a phone call or two.  It's not that difficult, and no soul known to me would be shocked.  The even older concerns of the narcissist don't keep the heart contracting, the thought of how some would be hurt, some insulted, some angry, some mildly disappointed.  Will the truth of my life come out, every secret, every fault, every unknown success?  I murdered narcissism about a decade ago, with lapses, true, but that's no longer the darkest stain on my soul.  (The secret to getting out most organic stains is the oxygenating action of hydrogen peroxide.  And, by the by, an excellent help to CRPSers out there with feet that make passers-by cringe in revulsion?  One cup hydrogen peroxide and one cup Epsom Salts, diluted to an amount that seems practical.  Oh, but first take a handful of pain meds, say 25-40 minutes beforehand, because the use of an old toothbrush is required.  If someone really loves you, they'll do that part while you smack some gum and watch "Duck Soup.")

Again, what has my hand jangling so in a jello-shimmy just short of suicide, since nothing has changed the sieve envy of my mind?  Mine own anger, that's what.  Not yours, the possessive referring to none of you, Dear Readers, but the "yours" that designates the Usual Suspects, more precisely, the You the eye and mind of Keyser Söze would flit upon, briefly, not to concoct a credible story, but as the world's best annihilator of essence, a succubus of haloed ringlets of shades, lengths, and quality to rival Joseph's ridiculous coat, a precision parser of your particular sentence.  Everything is a circle, isn't it?

So now I must pretend.  Pretend that that is not my hand jazz dancing near hot flame, that that is not furor lighting up mine eyes, but joy at seeing you again.

It's nothing to do with being happy or not, or any other sentient commonplace.  I've explained, even, that it is not self-pity.  I recognize that there are people who suffer beyond my wilds.  I am sorry for them and do what I can, when I can, to alleviate their situation -- though usually that alleviation is so abstracted it will do the individual inciting it no good whatsoever.

I can see the goddamned glass is half full.  Three-quarters, even, if you press me, and if we can chat physics and the effects of modifying the shape of the eye's boundary.

Fred delights in the notion of a holographic multiverse.  Would you believe that I find most succinct the explanation given by the Physics section of About.com?  (Especially in comparison to the hair-raising versions Fred blurts out as he rocks in the green rocker by my bed!)  Here! I've stolen some of "About"'s explanation:

The holographic principle is a mathematical principle that the total information contained in a volume of space corresponds to an equal amount of information contained on the boundary of that space. This dependence of information on surface area, rather than volume, is one of the key principles of black hole thermodynamics.  

In Brian Greene's 2011 book The Hidden Reality, he suggests a tightly interlocked Holographic Multiverse:

the holographic principle envisions that all we experience may be fully and equivalently described as the comings and goings that take place at a thin and remote locus. It says that if we could understand the laws that govern physics on that distant surface, and the way phenomena there link to experience here, we would grasp all there is to know about reality.

Now, here is where "About" dumbs it down, and pretty much says what Fred, a-rockin', also says, but degarbled. Speech going back and forth in space, combined with smug glee, is not conducive to teaching. The sound is aimed all over the darned place, distorting the waxy protective vernix of my immature comprehension.

According to the holographic principle, there should be a physically-equivalent parallel universe that would exist on a distant bounding surface (the edge of the universe), in which everything about our universe is precisely mirrored.

What exactly does this mean?

Well, we live in a three dimensional universe. If you have a 3-dimensional region then the edge of that region would be a 2-dimensional surface. For example, if you have a solid rubber ball, the 3-dimensional object has a 2-dimensional spherical surface.

The holographic principle suggests that this surface would contain enough information to perfectly represent everything that takes place within it. Think of it kind of like a reflection on the surface (although this is only a useful analogy, the precise formulation of the holographic principle is a mathematical relationship based upon quantum physics).

If this highly-theoretical conjecture is true, then that means that our universe exists in two different forms, though those two universes are completely identical in every respect. As Brian Greene explains in his 2011 book, The Hidden Reality:

Our experiences here, and that distant reality there, would form the most interlocked of parallel worlds. Phenomena in the two - I'll call them Holographic Parallel Universes - would be so fully joined that their respective evolutions would be as connected as me and my shadow.

This is, in short, the origin of my anger.  I want to object, as if these worlds retained any proper respect for Robert's Rules -- using a diaphragm-controlled stage voice to call out, "Point of order!"  That would stop everything -- EVERYTHING -- until I could get everything -- EVERYTHING -- figured out.  Because my understanding, at this point, is that, while I may exist, how, where, when, and why I do has less force of impact than my dandelion fluff coalescing with our algae-rich moat water.

It seems that for my suicide to be a true thing, I must first strive to be one-dimensional, a pair of points whose surface has no dimension.

Rocking beside me a few days ago, happy as a clam, Fred marvels, to and fro, that we've found the Higgs boson and now he puzzles at its lightness.  Particle physics has gone red with the shame of its insufficiency to explain the 85% of matter that we cannot find, dark matter, and over the purple prose of the new fictive string in the narrative, that of supersymmetry, which posited an undiscovered doppelganger that is, for symmetry's sake, much heavier.  Elegant mathematics and no proof, string theory, and now... mucking up my suicide, extra dimensions, microscopic, and always, evidentiary failure of tests of "existing" models.

Fred sounds so content, excited.  Like one of those people who will live, old, bent, and aching within that contentment, and will greet death as a passageway, a chance to morph into some of that formulaic elegance, that chalk eeked out across green slate, erasable marker on white board, those old dreams, smashed to smithereens in search of God.

Physicists are killing the dream of suicide.


© 2013 L. Ryan

Elizabeth Bishop, That Bitch

Today might have been about poetry but instead it became about a poet and her lovers, and my desire to steal her poetic for my own, as it is my aspiration.  Actually, I don't know enough about Elizabeth Bishop, beyond her poetry, to know what aesthetic she claimed.

Ha ha ha!

I learned why there are so few pictures of Bishop.  She disliked the roundness of her face due to the steroids she took for asthma.  I'm with you, there, girly-girl!  After 15 years on prednisone and with CRPS spread to my face, I'll clock you before you'll get a snap of this visage.

elizabeth bishop

But very distressing, as the hours passed, was the lack of photography of  Lota de Macedo Soares.  In all my searching, and I search well, there seems to be one photograph that has simply been resized, reconfigured, recast, and it's far from revelatory.  Forget flattering.  More insulting than distressing are the masses of still shots taken from the insipid play and movie of their life together -- was it based on Rare and Commonplace Flowers?  I've not read it;  Reading about it is irritating enough.  Get this:  It's recommended for academics in the most fawning blurbs and yet is clearly "novelistic," and somewhat "disappointing" for concentrating more on Lota than Elizabeth.  Never mind that there is little in Bishop, beyond her isolated years in Brazil, to endear her to Brazilians.  Anyway, despite a dearth of primary sources -- their letters were destroyed -- probably flambéed in tequila -- the book hints at intimate photos of the couple.

Not one goddamned photo of the two together could I find.  ("...and I search well...").

And the weirdness.  Why must there be weirdness?  In lieu of scratching out the clear political liens tugging at Lota, the difficulties of working with and for Rio de Janeiro’s Governor, Carlos Lacerda, mostly over her work on Flamengo Park, she's made out to be an emotional cripple (while Bishop is drunk in some well-designed corner).  Lacerda was one of those brief Communists who flipped in the 1940s to become rabidly anti-communist and archly conservative... who opposed almost every Brazilian presidency and then stubbed his toe in the military coup of 1964. Anyway, Lota was a magnificient urban architect but all anyone can agree on is the primacy of her status as autodidact.  Not only did I have the sense that everyone is waiting for her buildings to literally fall down, but there's an audible sighing between sentences about her decision to kill herself -- pure irritation that she couldn't stick it out with the great American lesbian writer.  Midst the saws of the sighs are the pig grunts of joy with each synonym used for "aristocratic." Or was it "autocratic"?

I love Elizabeth Bishop's poetry.  I've been decidedly neutral about her as a person (Why should I care about her as a person?) until today.  A kind of tragic childhood, except it does not seem to have bothered her overly much, though it may have influenced her desire for words, if nothing else, to be just so. At some point, she did describe herself as "naturally born guilty," and there's no pickier poet than a guilty poet. A trust fund baby whose friendship with my truly beloved Marianne Moore garnered her awards, laureat-ships, teaching positions, and publication -- Bishop being, apparently, too shy, too busy building a street rep as a "poet's poet," to take care of the business side of poetry.

Randall Jarrell, too, I suppose, was a gate-keeper.

Who does not love Randall Jarrell? (I imagine a sea of nods.  Don't cross me today. So: nod.)

Elizabeth Bishop and Robert Lowell were an item.  He proposed, even.  I remember laughing at a NYTimes reviewer of their correspondance, who chose to sum up the inbred impossibilities of that endeavor this way:
"Bishop was an alcoholic and a lesbian, as well as half a dozen years older."

Journalistic integrity.  Gritty digging in the archives.  Ha ha ha!

I figure there aren't that many unsnagged aesthetics/poetics to go around.  You do the math.  So as I sat here vigorously nodding at Slate's Meghan O'Rourke and her summation of Bishop's guiding constellations, it was positively debilitating to read such an excellent description of mine own work, in her brief article, "Casual Perfection," published in June of 2006 (before, it must perforce be noted, that I seriously returned to writing).  O'Rourke purportedly was addressing the outrage at the publication of Bishop's drafts, a reaction understandable on behalf of a poet whose drafts might encompass a decade of searching for the flaubertian mot juste.  Or perhaps it'd be more correct to speak of an anti-mot juste?  I guess what I'm floundering on about is that her drafts did not represent a high kick toward progress but more of a holding pattern while the poet waited for the correct wording to show up.  It's not like her empty spaces were spatial abstraction, imbued with whatever -- she was no Mallarmé -- but more like her empty spaces were empty spaces.

So glad I could clear that up.

So here is O'Rourke writing about me before I mattered, thoughtlessly erecting hotels on Boardwalk:

[It has to do with] ...the mystery at the core of Bishop's work: the way her poetry evokes powerful, intimate feelings without devolving into mere self-revelation. Bishop chose a path of aesthetic discretion at a time when many of her peers were pursuing, to great acclaim, confessional self-disclosure. Publishing her fragments seems a betrayal to those who believe that Bishop's genius is largely a product of this reticence—who fear that coming upon Bishop in naked moments of aesthetic undress would destroy the spell cast by her poems.

[...]

A midcentury poet, Bishop wrote at a time when academic studiousness was one vogue (Allen Tate, Randall Jarrell) and self-revelation another (Robert Lowell, Anne Sexton). Following neither, she carved out an original niche, a poetics of subtle observation. Bishop writes about things: filling stations, radio antennae, shampooing another person's hair, a moose in the road. Her work has, as Vendler has put it, a remarkable commitment to exactness, and her primary mode is description. Consider the opening to her poem "Arrival at Santos," the first poem in the prize-winning Questions of Travel:

Here is a coast; here is a harbor;

here, after a meager diet of horizon, is some scenery,

impractically shaped and—who knows?—self-pitying mountains,

sad and harsh beneath their frivolous greenery,

with a little church on top of one. And warehouses,

some of them painted feeble pink, or blue,

and some tall, uncertain palms. Oh, tourist,

is this how this country is going to answer you

and your immodest demands for a different world

and a better life, and complete comprehension

of both at last, and immediately

after eighteen days of suspension?

Characteristically, this poem describes a landscape in the act of being perceived, rather than as the poet has decided (or recalls) it looks. What you first notice is the accumulation of adjectives: meager, self-pitying, sad, harsh, frivolous, little, feeble, tall, uncertain, immodest—precisely the type of pile-on you're taught in introductory writing classes to avoid. But the adjectives are transformative rather than redundant, because they are deployed with such unorthodox precision—as in "tall, uncertain palms," or "feeble pink." Bishop uses adjectives not only to describe, but to anthropomorphize what she's looking at, so that what we see and what is seen are inextricably fused. Her subject, as John Ashbery once memorably put it, is the way we are "part-thing and part-thought." Seeing becomes a form of feeling.

 Me, and my art, in a nut shell.  Damn this whole business of time as a river, temporal progression.

"Make it new"?  Up yours!  Damn me to being "in the tradition of..."?  Well, I think we know what you can do with that, eh?

A frustrating day.

Oh, you wouldn't understand.

In one of her convivial letters to losing-lover Lowell, Bishop has the gall to write (and he who cites the gall to characterize the sentence as "written more in sorrow than in pride":   “I feel profoundly bored with all the contemporary poetry except yours, — and mine that I haven’t written yet.”

See what I mean?  Out of some sort of asynchronous allegiance to Starfleet's General Order Number One, the Prime Directive, Bishop simply chose to ruin things for me over potentially causing a minute pinprick to the fatalistic space-time continuum.

So let's just close, shall we?  And why not go out with one of Bishop's most famous -- that in the writing hand of another might slip and slide with the pathos of having lost a former lover to an excess of valium, and on the kitchen floor, no less.  Oops.  More sleuthing -- you know, that academic art -- suggests that the "art of losing" references her broken relationship with Alice Methfessel, Lota's successor, as well as the dead Brazilian.

I chose "One Art" not only because of its fame but also because it's a modified villanelle, a form that I adore and fail at, with regularity.

One Art 

BY ELIZABETH BISHOP 

The art of losing isn’t hard to master;
so many things seem filled with the intent
to be lost that their loss is no disaster.

Lose something every day. Accept the fluster
of lost door keys, the hour badly spent.
The art of losing isn’t hard to master.

Then practice losing farther, losing faster:
places, and names, and where it was you meant
to travel. None of these will bring disaster.

I lost my mother’s watch. And look! my last, or
next-to-last, of three loved houses went.
The art of losing isn’t hard to master.

I lost two cities, lovely ones. And, vaster,
some realms I owned, two rivers, a continent.
I miss them, but it wasn’t a disaster.

—Even losing you (the joking voice, a gesture
I love) I shan’t have lied. It’s evident
the art of losing’s not too hard to master
though it may look like (Write it!) like disaster.

--  from The Complete Poems 1926-1979

Using suicide to promote CALMARE: SHAME ON YOU!

© 2013 L. Ryan

The utter irresponsibility of this type of marketing leaves me almost speechless.  In a pitch by Michael Breen M.D that references a woman named "Gracie," a "Gracie" that has been recycled, at last count, six times, pushing CALMARE treatment for CRPS / RSD (parent company CTTC -- Competitive Technologies, Inc., a penny stock today hanging at 16 cents on the market) dares to begin by stating:

Gracie Bagosy’s condition is so painful, the highest 

cause of death is suicide.

Of course, I cannot let the subject of CRPS and suicide be brought up blithely, by Breen or by this blog author, so I want to refer readers to the significant time and study invested in the topic by the respected RSDSA, most notably by Linda Lang:

There is a very big difference between living with a chronic disease such as CRPS/RSD and actively dying with a disease such as cancer. Although a literature search reveals claims that CRPS/RSD patients have an extraordinarily high incidence of suicide, and a CRPS/RSD patient actually read testimony into a Subcommittee on Health in June of 2001, saying that CRPS/RSD leads to death and the leading cause of that death is suicide, there is absolutely no evidence to support these statements, in fact there are no statistics at all on CRPS/RSD and suicide. When asked about it in 2001, Dr. Robert Schwartzman said, "…there is no data on RSD and suicide. It clearly happens and is almost always attributed to other causes." He adds that out of 73,500 patients, he has had only three that he is sure did commit suicide. 

Click HERE for a link to RSDSA's extensive look at the statistics and the realities for CRPS and suicidial ideation and action.   I know I think of it every day -- but to use that as a marketing "hook" literally nauseates me, and should you.

FOR PREVIOUS POSTS ON CALMARE/CTTC, CLICK HERE.

for brian grimsley: "because you would not love me back"

brian had a hard life
always slashing at his hard work
to move steadily toward happiness.

hemophiliac, he'd bleed in his knees
for the joy of giving an old VW the starting push
it needed to putter forth -- launched with his broad
smile (i loved) and a wave (i smiled).

he'd bleed in his elbow, his hips
just to be the pale knobby equivalent
of some lost ideal of male.

we shared a good year or so, studded
with emergency runs for Factor Eight
ate pizza and stayed stoned for pain, made fun
from little, black lights and dancing underwear.

i was soaking in the bathtub
pleasantly buzzed and bubbled
when the fuzz of his words

slammed bam into focus, the water
suddenly too cold, my mind painfully acute
our house our babies i like your couch
better than mine my mother's wedding dress

red sirens burned my brain, i grabbed at towels
then slashed at his hard work of happiness
grabbed the trowel cementing demented brick.

"brian, no, this is just fun, this is just now, i have
a life". but you said and he spewed words i'd never used,
would never use, eyes too bright, cheeks spotted red,
if it's not true, i'm dead, and you are, too.

not a good end, i thought, but an end, and a section
of my belly relaxed that i'd not known tensed, and i smoked
another joint and went to work, three to eleven,

critical care unit, where winking nurse friends pocketed vials of pure
cocaine, and brian was wheeled to bed eight around nine,
overdosed on aspirin, an internal bloody mess,
i spent the night  working the other end
angrier than i had ever been.

he was out in less than a day, followed me here,
there, truly everywhere, broke into my car. left gifts:
his moccasin lace-up boots, a beatles' album
choked me by the neck slammed against the wall
breath foul, eyes bulging, dedicated songs to me
on the radio, knowing what time my alarm went off,
leather and lace*, and i lost appetite and hope, the police,
his psychiatrist, his mother, all asked me why i
was slashing at his hard work of happiness
and i slept at friends' houses, had friends walking
ahead of me, behind me, surrounding me
but still he would slither through and bend me
over the hood of my baby blue 1965 cadillac

our house our babies i like your couch
better than mine my mother's wedding dress

what i remember most is the most surreal the moments when i thought, no, this cannot be true, my mom and sister inviting me to a precious little tea house, where i knew i would shatter bone china just by looking at it knock over tables rend lacy cloth them wanting to know about my boyfriend, simper giggle, all dressed up in someone else's clothes, mind raw, my need huge,

their bright eyes rouged balls of cheek not so different from his and my sister out to here with bouncing baby that she birthed the day brian drove his rusty white car to the nature preserve attached a long black tube rubber thin plastic i never found out to the exhaust pipe ran it into the driver's side window opened just a slit maybe held it in his mouth or tried tight faded jeans slightly flared barefoot blue plaid flannel shirt snaps no buttons because buttons hurt his hands blood pooled by gravity not much paler than alive but tinted translucent blue shit on the bench car seat

the note he sent by mail did not arrive until the day after all i remember is i had to die because i loved you but you would not love me back before the rednecked glaring sheriff grabbed it from my hands put it in a baggie turned at the apartment door oh yeah his mama dont want you showin up at the funeral you hear my sister named her baby boy brian as if it were a tribute but it wasn't because she did not even know he died i told them we broke broke broke up oh honey i'm so sorry but what about that blake boy and my sister had her tubes tied so she'd never have to go through that again

no one ever knew        the brian
dancing in the dark
in my bikini
the blacklight loving
stripes of gaudy           orange
yellow green red or playing
the guitar his weird     wobbly
vibrato voice his love of cheddar souffle
his last courage not killing me      too
his last cruelty              killing me too

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

*i got up every morning at five to do my latin... that class met daily at eight and that was the only way i could get the memorization done.  i worked 40-hour weekends and took 21 semester hours at university.  there was no time for a relationship and i never encouraged or entertained that idea.  it came out of the psychotic blue that one day.

Leather and Lace  (i hate this song..)
lyrics by Stevie Nicks

Is love so fragile
And the heart so hollow?
Shatter with words
Impossible to follow

Saying I'm fragile
I try not to be
I search only
For something I can't see

I have my own life
And I am stronger
Than you know

But I carry this feeling
When you walked into my house
That you won't be walking out the door

Still I carry this feeling
When you walked into my house
That you won't be walking out the door

Lovers forever, face to face
My city or mountains
Stay with me, stay

I need you to love me
I need you today
Give to me your leather
Take from me my lace

You in the moonlight
With your sleepy eyes
Could you ever love a man like me?
{ From: http://www.elyrics.net }

And you were right
When I walked into your house
I knew I'd never want to leave

Sometimes I'm a strong man
Sometimes cold and scared
And sometimes I cry

But that time I saw you
Knew with you to light my nights
Somehow I'd get by

Lovers forever, face to face
My city or mountains
Stay with me, stay

I need you to love me
I need you today
Give to me your leather
Take from me my lace

Lovers forever, face to face
My city or mountains
Stay with me, stay

I need you to love me
I need you today
Give to me your leather
Take from me my lace

Take from me my lace
Take from me my lace

A Doctor's Point of View

I'm having a hard time, but happily so.

When I made my last round of the "specialists," I was a different animal.  I told them, sometimes "in so many words," sometimes in clear, spelled-out nouns, verbs, and choice prepositions, to "man up." By chance, they are all men, and in my defense, I alternated 'man up" with "step up."

The medications that the Intimidated Ones prescribed were mostly the ones on the list I gave them.

Okay... no, I wasn't that harsh, and they weren't that resistant.  And one of them, dear Bob the PA, came up with a winning drug on his own, though he did need the shake up of hearing me say "I'm done with your way of doing things."

And that's my message to anyone with intractable CRPS who has reached the point where suicide is not just one more option on a long list, but the most appealing and objectively effective option.  You do, however, have to listen to my message before suicide is the only item on your list.  So pay attention.

Get away from the CRPS  message boards where there are one or two self-proclaimed experts and hundreds of following sheep.  The science they skirt between vents is usually at least five years behind the times.

Forget the tens, the hundreds of screw-ups and insults you've endured at the hands and mouths of medical professionals who know next-to-nothing about CRPS.

Forget the mantras about the sympathetic nervous system run amok, forget the lame explanations of how "if feels like being doused with gasoline and set on fire" (unless, of course, you have lived through the experience of gas dousing and flame).

Read.  Read the latest research.  What you don't understand, reread, and look up what is obscure.  Place confidence only in good research done at good scientific centers (sometimes, the fields are not medical, per se, but affiliated ones, medicine's building blocks).  Often, all you will start with is an abstract -- if a paper seems to propose something you deem promising, buy it, or ask someone with library/subscription access to get it for you.  Never forget to check at RSDSA.org, as they archive lots of the newest research and its available to everyone.  Bless them.

My pain is not entirely due to CRPS, so I had perhaps more complicated things to research, though in the end, my attitude has become, "Screw it, if it might help with X, let's try it."

So if you have also reached the "screw it" phase, if suicide is rising to the top of your list, make a blitz run to all of your specialists.  Insist on the appointments -- no whining -- just be really clear that it needs to happen now,  And when you get there, cut to the chase.  Again, no whining.

Say... This is where I am at.  If you want to help me, then consider prescribing some of these meds that are having some success in off-label or experimental use.  Don't defer, don't refer.  Say no, or just do it. Thank you.

I'm on three new drugs and their side effects have me curled up most of the time.  I expect to adjust.  I also expect that I will suffer some of the more severe side effects they can cause -- from severe blood sugar changes to liver and kidney failure.

But you know what?  When I wake up, I can straighten my legs without screaming.  I am able to sleep on my side for the first time in over six years.  I was able to walk 25 feet instead of my usual 10.  There was a day when I did not know how to rate my pain on the goddamn pain scale because it was so low.  I gave it a 4, after living at 8 and 9 for most of the last decade.

Suicide is still on my list.  If these meds had not begun to make noticeable positive changes, I would already have killed myself.  I am way past the "Do you have a plan, dear?" stage.

If it makes you feel any better, and sadly, it did make me feel a little more righteous, take the time to read this article by a doctor who became a CRPS patient.  Think of the perks she had -- first, just by being a doctor; second, by being able to use her colleagues for favors; and third, by being able to jump to the head of the line...

And it still was far from easy for her, you still will recognize the disappointment, confusion, and frustration. Very little anger, though I expect she may have edited that out.

Available at RSDS.org, of course:


Improving the Diagnosis and Treatment of CRPS: Insights from a Clinical Immunologist’s Personal Experience with an Underrecognized Neuroinflammatory Disorder by Karen E Binkley


I am not counseling you to keep hope when all seems hopeless.  I am counseling you to shake that staid orchard of trees, those stalwart doctors who have treated you for years, maintaining an untenable status quo -- and I am asking you to shake the hell out of them, and to use that fallen fruit.

If you are one of those remarkable people who live by faith, who find joy in simply being alive, you, of course, are not whom I am addressing.  You, I hope, will just continue to have a darned good day. Excuse me, I am seeing double and a nap is calling my name, my siren name.

Graphic Credit: Neuroinflammation