Finding Your Way Back to the Light

I frequently can be heard (if anyone cares to listen) groaning/mumbling "I do NOT understand my body..."

I've NO idea what's actually wrong with me, neither does the medical establishment, and as much as it might be comforting to have a label to slap on my idiopathy, all in all I'd just like it to go the fuck away. Strong language definitely intended, sorry if it offends you, but to know me is to hear such words on a regular basis. A legacy from my mother, I fear.

Three years ago it was clear to me and to anyone who spent any amount of time with me that something was really wrong with my body, so I sought help, then more help (read: I threw money at the problem), and finally was told they couldn't find anything wrong with me and that 1) I needed to follow up with a shrink, and 2) if I really felt I couldn't bear the pain (oh sure, I can handle it, I just wanted to come hang out with the super-power urologist in Seattle, a very difficult two hour trip from my house in Port Townsend, and pay for the privilege), I should find a Pain Management Facility. I tried the latter, and discovered that a "Pain Management Facility" is primarily a place for recovering addicts, not for people who need help with managing their pain. This clinic (the only one in the area, btw) could NOT seem to understand that I NEEDED some help with the pain and wasn't taking, let alone addicted to anything! When I finally got them to understand, they told me that there was a two year waiting list to get in. Two years?!

Click for large version

I pushed back on the doctor who sent me there, explaining I needed some help with the pain NOW. And the answer I got? She washed her hands of me, telling me through an assistant to "go to the emergency room if you're in so much pain!" The ER is why I ended up in her office in the first place! I honestly believe that because the doctor couldn't figure out what was wrong with me in spite of her mega-education and medical facilities, she didn't want me around as a reminder.

Frustrated by zero help from my urologist, completely out of funds, and with the pain increasing daily, I simply lost all hope. I questioned my sanity - WAS it all just in my head? I was in incrementally worsening pain and utterly sans hope, simply waiting to die. In the night I begged the powers that be for release, and I wrote poetry. A lot of poetry. Here're three from one difficult but still lucid night that tell the tale:

Toothed and Clawed
Three About Pain

Sonic waves of pain
- so familiar
I barely snarl.
Mantra:
Breath shallow*relax the belly*pain almost gone
(I have the trick; the secret)
I inwardly whisper
Another rogue wave breaks
- the secret drowned
in pain.

***

Dull Darkness
Icepick Sharp
Exquisite Focus
Hideous Constant
Silent Suffering
Secret Succubus
Energy drain
Life taker
Nothing else matters
Only now
To stop

***

Inside I
claw & scratch
Willing it
to stop.
I’d do anything
to get away
from the twisting
whips of pain.
I think
this must be
why
men break under torture.

Two and a half years ago I was still occasionally managing a trip to the post office or downtown, but when I began dropping to my knees in the middle of the sidewalk or my favourite bookstore due to the extreme pain, even those small pleasures stopped. Two years ago I was unable to walk without a staff upon which to lean as I crept forward, and upright was a position I could no longer attain. So I moved from bed to bathroom and back, tears coursing down my cheeks, and I prayed - HARD - every night that I would die.

A friend who lives his own brave life with chronic pain suggested I might try the family of neuropathic pain blockers now on the market, so I decided to seek help again through my local doctor. Douwe Reinstra 's a real gem, with both a medical degree from Duke and a degree as a homeopathic physician, too. AND he has common sense enough to know that he's not a God and that we're partners in my health care. I sat there and cried, telling him of my sheer hopelessness and wish to die. He was duly alarmed by my obvious pain and resultant emotional distress.
When I remembered to ask him about the nerve blockers (I'm certain I had written it down, as my brain had no capacity to hold any resident data at that point), he suggested we try a drug that'd been around for awhile; amitriptyline. This drug was introduced in 1961 as one of the very first anti-depressents, and it did a terrific job but for one small problem...it knocked people out. Well YAH..it's hard to be depressed when you're sound asleep. So by pharmaceutical standards, it's been around a long time, but only recently was its efficacy in treating neuropathic pain discovered; said use still listed as "unapproved/off-label/investigational" use, though not illegal.

I still HAVE pain, but I'm no longer house bound, and because of amitriptyline's sedative-like effect, I sleep HARD every night after my 9pm dose. I really have to push myself to wake before 9am, and 10am is more reasonable according to my body. :-)

But I was still in a deep pit of despair created by years of misery, in spite of some relief from the terrible agony, as I didn't think there was a chance that I could ever manage to resume a real life again. And I became suicidal again. Ideationally, not actively. .so I did what I always do...I turned to books. The next major turning point for me on my journey back to the light was a book, "Anatomy of Hope; How People Prevail In The Face of Illness" by Dr. Jermone Groopman.

The biggest difference between this and the usual book written by a member of the Medical Establishment is that it isn't merely another load of preaching by some self-appointed God-like Doctor (cue the angelic chorus). Instead, Dr. Groopman takes us on a journey from his years as a young intern learning about hope and hopelessness and how best to help his patients, to his own terrible illness and hopelessness and slow crawl back to into the light. More than any other single take-away from the book, I learned to tell the pain it was no longer allowed to have complete control of my life, and that I was not going to just do absolutely ANYthing to keep from feeling pain.

And day by day, step by step, I have worked my way back a LONG distance into the light. I use my art as an outlet for my frustration and pain and rage, I volunteer one day a week at the local library, about to move up to three, I have begun to get involved in a number of other local groups, and *gasp* I'm actually gaining some friends because I push myself every day to take another step toward life again.
I still have PLENTY of bad days and nights; I'm recovering from a particularly nasty flare up right now, largely brought on by the massive meltdown experienced a couple of weeks ago (see June 29 post). Stress, absolutely, without a single doubt or argument causes the idiopathy (LOVE that word...SO perfect...it's an idiotic pathology!) to overpower me. But my doctor has VERY reluctantly deigned to give me pain meds (not his fault, for the Feds are holding all doctor's, good and bad, to the fire - do NOT get me started on the fear mongering government agencies that are causing doctors to refuse pain meds to EVERYONE. The Feds can't meet their drug war quota, so they've turned to doctors and legal meds. Grrr...), so when I see trouble on the rise, I medicate it and lay low for a day or so. I made a 30 day (1x daily) supply of Oxycontin last....are you ready for this? Almost a year. Yeah. I know..I'm stunned by that, too. Over two years, the amitriptyline has had a leveling effect on my situation, and as the problem has calmed, I've been able to do more, etc. A reverse Catch-22, if you will.

So there you have my thoughts about pain, at least MY pain, for whatever it's worth. If you'd care to crawl around a little more inside the mind of chronic pain, sadly, there are a LOT of links available just by searching on "chronic pain," but here are some good blogs/articles that will afford you a better understanding of what too many of us endure every single day:
The Fat Lady Sings
Existential Punk
Living With Fibromyalgia
The Prejudice Against Chronic Pain
The Spoon Theory

Manifesting Love

I live in the same house with a man with whom I used to have an intimate and loving relationship. Through a series of events and experiences, we are no longer in that relationship. We've tried out the idea of being brother and sister, but that hasn't worked, either. For economic reasons, we are still moving forward as a financial unit, but in terms of relationship, well, let's just say you could freeze a steak between us. That's right, the cold spot you feel in this house isn't a ghost of a person, it's the ghost of love.

I moved across country to a new town with Peter three years ago, leaving my friends behind, and I have very sadly been without either friendship or love ever since, my heart saved only by a wonderful array of caring women I found via the Net.

Three weeks ago, Peter took a two week vacation with the woman he's been in a relationship with for an undetermined number of years...possibly dating to a time before he'd met me. I don't begrudge him love, but I DEEPLY resent his duplicitous behaviour. *sigh* But there's little value in descending into that valley of pain.

While Peter was gone and I was hollow-eyed with self-grief, I wandered around my favourite (metaphysical) bookstore, Phoenix Rising for a couple of hours. In the process, I happened across a little book, The Soulmate Secret by Areille Ford. As with so many self-help books, this one had an assessment quiz at the front. Now I'm wide open to the idea of a soulmate, so, scanning, I asked myself the questions, thinking it would be the usual ho-hum nonsense. But then I read "If your soulmate knocked on your door right now, how prepared are you emotionally and physically?" and "Is there room in your home for your soulmate?" And those two questions really made me think. AM I ready if the right person suddenly appeared? Would I be proud of myself and my life, or apologetic? And so I started taking stock and making myself ready for my love, who I feel certain is surely nearer me with every breath taken. Love, I am waiting...

Sunday Uplift - I Feel Lucky

Today's post is dedicated to Kat and to so many others going through tough times right now. The connection between women, near and far from one another, is so much stronger than any other magic I've encountered in the world. So here's to us, gals. Hold on..and remember, sometimes you're the windshield, sometimes you're the bug...

My Brush With Greatness

Everyone's had one...some event or occasion or incident during which you've seen or interacted with a celebrity. I've had a few, including one blissful moment in rush hour traffic on Mopac in Austin, TX. Slowly making my way home from a HORRIBLE job, I was bawling about my miserable life, when I happened to look over at the Mercedes in the next lane with the open windows and sunroof, and there was Robert Redford, driving and laughing with a male friend. And suddenly I just didn't care about that stupid job anymore.

So that's the kind of thing I'm talking about. The pinball-esque nature of the human condition dictates that we will eventually bounce off a better-known steel ball or two. And as wonderful as my pinball clank off Mr. Still-Dishy Redford was, I had another that thrilled me even more.

The year was 1977, the city, Seattle. Summer, 10pm or so, and I was standing in line, waiting to get in to see Star Wars for the very first time. That's the FIRST Star Wars movie released, for you kids, and yes, that DOES make me a tad creaky around the edges, AND on the leading edge of Nrrd Grrls, too. Star Wars was the first film I'd ever seen a trailer for on television and I believe the first to use toy merchandise as a tie in, both of which served to up the amperage on the excit-o-meter.

So anyway, I was all young and cute and jumping around in my excitement as I stood in line, and then with one bounce I suddenly hit the human wall behind me.

And I turned.

And I looked up.

And up.

And looking down at me with a sweet smile was Bill Russell, all magnificent 6 feet 10 inches. The Celtics basketball legend and then head coach of the Seattle Sonics was looming large right behind me, waiting in the same around-the-block line to see Star Wars. You see, I cut my teeth on watching the Boston Celtics and 76ers (and later the Lakers) battle it out, year after year, and learned to truly love Russell when he became the Celt's coach. And then, thrill of thrills, he moved into the head coach position with the Seattle Super Sonics, creating a team that Lenny Wilkins led to the National Championship two years after Russell left. And there he was, my hero, living and breathing within inches of me! I swooned with pleasure on the spot, and probably would have gushed all over him, but just then the line began to move forward.

So now I like to say that Bill Russell and I saw Star Wars together. What? It's TRUE!

How about you? What're some of your tales of brushes with greatness?

'Tude Central

Had a MISERABLE day yesterday, in spite of just trying to lay very low (can you say "stay in bed as much as possible"?), with a myriad of meltdowns, a plethora of pain, and a hatful of hissy fits. Yeah, okay...enough with the illiteration. By bedtime I was writing notes to a friend on the other side of the world, my vituperative prose positively bleeding a vast array of profanity!

*Click 'Send,' go to bed. Wake up on the run with too much to be done in one day before my feet hit the floor. Have a slim moment of miracles and magic before the hideous umbra of the day before stole back in and darkened the day and my mood again.*

One of the things that MUST be addressed this week is the growing pile of promised artwork, so I decided to cruise a few favourite websites, not really for inspiration but rather for a little "you can DO it!" shove. So there I was on Illustrated ATCs, enjoying all the beauty and inventive ideas, when BOOM! The very illustrated expression of my last two days had been created. S. L. Scheibe (Sal to her friends) is a terrific artist and very pleasant human being, too. She describes herself as "a freelance graphic designer and web developer in Ontario,"but she's far more than that to those of us who benefit from her various modes of expertise.

Seeing those pictures of my mood made me laugh, and laughing defanged my fractiousness, of course. Hurray for art...it has such amazing powers of persuasion, healing, expression, and on and on. What has art done for YOU lately?

Sunday Uplight: Fathers and Daughters

I miss my dad so much sometimes. I could really use his guidance right now, his arm around my shoulder, his pride in and approval of me. Don't suppose I'll ever get over him. So for Father's Day, I offer a lovely animated story about a father and daughter. I cried. You might, too.

From the filmmaker, Michael Dudok de Wit, “‘Father and Daughter’ is a film about longing, the kind of longing which quietly, yet totally, affects our lives.”

Jedi Master In The White House

Have you seen this footage?

A entire FLOOD of thoughts hit me when I saw that small piece of film. At the center of my own set of principles is Intent is Everything. I frequently use a story from Paramahansa Yogananda's Autobiography Of A Yogi to illustrate how important Intent is to everything we think/do/are. The story is of Yogananda as a young student of his guru Sri Yukteswar. Sitting one dusk at his master's feet, he lifts his hand reflexively against a mosquito inserting a "hypodermic needle into his thigh," only to suddenly remember a harmlessness aphorism he'd been taught, and stayed his hand.

"Why didn't you finish the job?" asked Yukteswar
"Master! Do you advocate taking life?!" exclaimed Yogananda in shock
"No, but in your mind you had already struck the deathblow." answered Yukteswar

Intent, it's all about intent. Once you really understand that, then it becomes completely possible to kill a fly with a clear understanding of any repercussions. A lot of people worry that Obama doesn't have what it takes to "push the button," but the calm, PIERCING intent he showed when killing that fly puts those fears to rest. And for those of us who worry about someone in his position being too eager to push that button, Obama's calm and apparently constant centeredness soothes our weary brows.

Yep, Obama is the perfect man for his job! A Jedi Master in the White House!

Or maybe his skill is simply the result of a childhood spent in tropical places with lots of bugs.

Either way, the Force is strong in this one...