“Fibromyalgia?” I snorted, unable to stop myself.  “You’re kidding, right?”  I did my best Dr. Spock imitation, raising my left eyebrow and looking at him quizzically.

“Um, no, I am not kidding.  You see, Fibromyalgia –“he began, but I cut him off.

“Fibromyalgia.  Right.  Isn’t that what you tell people – especially women you consider to be hypochondriacs – when you can’t figure out what is really wrong with them?  Or when you don’t think there really IS anything wrong with them?  C’mon.  If you can’t figure out the true cause of my chronic pain, just admit it.  I won’t mind, won’t be angry.  In fact, I may even respect you all the more for being honest with me.  So what’s the real deal-io Doc?”

I’m sure you can guess by now that this particular doctor was not best pleased with this particular patient, and his patience (that’s a pun, get it?) was running thin – obviously not true since I am quite plump, actually.  Never mind, as usually happens when I tell a story, I digress.  Back to the now red-faced, displeased doctor.

“I don’t understand you, Ms. Cardew, not at all.  Fibromyalgia is not just something I say when I don’t know what is really wrong.  Nor do I consider any of my patients hypochondriacs.  I totally disagree with all you just said and am, I must admit, offended by it.  If you do not value my medical opinion I am sure I can refer you to another doctor.”

I was surprised at how hard he took my joking – and to be honest, I was waiting (praying, actually) that he would look at me and utter the line from Wilde’s The Importance of Being Ernest that was the only saving grace of having my name:  I warn you, Miss Cardew, you may go too far.  Although in fairness, my favorite mutation of that line is the one my mother and I always said when someone went beyond the pale:  This time, Miss Cardew, you have gone too far! Heavy British accent and lots of emphasis on the “too”, drawing it out.  (That made us split our sides with laughter – we are easily entertained, I am sure you must think…and you are correct.)  Sadly, he didn’t utter those magic words; sadder still, hardly anyone ever does anymore, what with the state of public education these days.  No one reads the classics anymore – and if they do, they don’t understand them.  C’est la vie.  Again, I am off track.

I smiled slightly at poor Dr. Ferris.  “I’m sorry, doctor.  Truly I am.  And please believe me, I in no way meant to impugn your…medical…standing or opinion.  I just thought it was funny, in an odd – I see now – way.  Um, you know, you see all those commercials on television, and all the symptoms are so vague.  And then the medicines they advertise cause worse side effects than the pain itself…I don’t know, Sir.  I think Fibromyalgia has somehow just come across to me as a “catch-all” when no one can figure out what else to say.  Sort of a palliative, I mean.  So that the person in pain actually feels like they are not crazy and there really is something wrong with them.  It’s television, Sir, not you.  I am just a victim of advertising.  I’m sorry.  Can you forgive my rudeness?”  Big smile now.

Puffed up again to look like a real doctor, Dr. Ferris smiled benignly at me and patted my hand.  “Dear, there is nothing to forgive.  I understand how confusing all the misinformation out there can be.”

Now that we were friends again, he began explaining Fibromyalgia to me in all earnestness.  I wish he hadn’t.

Fibromyalgia is a bitch.  No one knows what causes it, though some hypothesize that potential causes and/or triggers include a physical or emotional trauma, sleep disturbances (exacerbated by the disease), an abnormal pain response in the brain, or even an infection, although no particular infection has been identified as a definite correlation.

The symptoms (chronic body-wide pain, joint/muscle/tendon tenderness) are vague; they could be caused by any number of things.  What stands out, apparently, is that the pain goes on and on and on.  For some lucky Fibro Sisters, it is only a few months.  Most of us, however, suffer with it for years.  Accompanying the burning, aching, mind numbing, strength-zapping malaise, there are other possible prizes:  depression (you ache all the time, can’t imagine why you would be depressed, can you?); chronic fatigue (you can’t sleep the whole night through because of the pain); constant neck or back pain; an underactive thyroid; other sleep disorders.  You fall asleep in pain, go through the day in pain, and wake up in pain.  Yipee.  And oddly enough, even though it often feels like the pain is emanating from the joints (like Arthritis), it isn’t.  It’s actually in the soft tissues of the body.

Long-term Fibromyalgia party-bonuses can include heart palpitations (I have those in abundance), problems with concentrating and memory (is that why I can’t remember where I parked my car at the mall?), numbness in the hands and feet, and, best of all, migraine headaches.

Fibromyalgia:  the cornucopia of symptoms, the smorgasbord of disorders.  No cause.  No real cure.  Oddly enough, Dr. Ferris told me that what helps most is exercise and sleeping normally.  Ha!  But it hurts to move around too much and I can’t sleep because I have Fibromyalgia.  Hmm.  Kind of a conundrum, wouldn’t you say?  Your body hurts when you move, and you can’t sleep through the night, but if you want to get better, you have to exercise regularly and sleep through the night.  My head hurts just thinking about it.

Treatments include physical therapy and exercise (oh joy, more moving about!) and stress-relief techniques.  Oh, and let’s not forget our pharmaceutical cocktails…Anti-depressants, muscle relaxers, pills that change the way your brain interprets pain.  Don’t get me wrong, I am a firm believer in “better living through chemistry”, even considered getting it tattooed on my shoulder, but it’s all just too much.

As much as I tried to joke about it, Dr. Ferris was right all those years ago.  I do have Fibromyalgia – at least all the classic symptoms.  Part of the physical exam for the disease is that you must have tenderness in at least eleven of eighteen areas, and it must have lasted for at least three months.  I had tenderness in sixteen of the eighteen, and when I saw Dr. Ferris, it had been going on for at least three years.  The pain travels, in a sense.  Sometimes it is in my elbows and knees, other times in my spine; still other times it is in my shoulders and my ribs.   There’s no predicting where it will hit next or how long it will last.  Six years after diagnosis, I am still fighting it.  And I am tired of it, with no end in sight.  I am, though, much luckier than others I know with this disease.  Wonderful, brilliant women whose pain is so debilitating that it keeps them from doing much at all.  I at least can still work and write.

I suppose the point of this was to say that Fibromyalgia really sucks.  If you do not suffer from it, thank the Lord or whichever Spiritual deity you choose, that you do not.  And next time you hear about it, it’s okay to laugh – a little.  But know that it is real, it hurts and it is never-ending.

So to those of you who are members of the Sisterhood of the Traveling Pain, I salute you.  Keep up the good fight.  Somehow we will come out on top!

This is something to think about when negative people are doing their best to rain on your parade.  So remember this story the next time someone who knows nothing and cares less tries to make your life miserable…

A woman was at her hairdresser’s getting her hair styled for a trip to Rome with her husband. She mentioned the trip to the hairdresser, who responded: 

“Rome ? Why would anyone want to go there?  It’s crowded and dirty.. You’re crazy to go to Rome . So, how are you getting there?” 

“We’re taking BA,” was the reply. “We got a great rate!”   

“BA?” exclaimed the hairdresser. “That’s a terrible airline. Their planes are old, their flight attendants are ugly, and they’re always late. So, where are you staying in Rome ?” 

“We’ll be at this exclusive little place over on Rome’s Tiber River called Teste.”   

“Don’t go any further. I know that place. Everybody thinks it’s gonna be something special and exclusive, but it’s really a dump.” 

“We’re going to go to see the Vatican and maybe get to see the Pope.”

“That’s rich,” laughed the hairdresser. “You and a million other people trying to see him.  He’ll look the size of an ant.  Boy, good luck on this lousy trip of yours. You’re going to need it…” 

A month later, the woman again came in for a hairdo. The hairdresser asked her about her trip to Rome.

“It was wonderful,” explained the woman, “not only were we on time in one of BA’s brand new planes, but it was overbooked, and they bumped us up to first class. The food and wine were wonderful, and I had a handsome 28-year-old steward who waited on me hand and foot.   

And the hotel was great! They’d just finished a £5 million remodelling job, and now it’s a jewel, the finest hotel in the city. They too, were overbooked, so they apologized and gave us their owner’s suite at no extra charge!” 

“Well,” muttered the hairdresser, “that’s all well and good, but I bet you didn’t get to see the Pope.”   

“Actually, we were quite lucky, because as we toured the Vatican, a Swiss Guard tapped me on the shoulder, and explained that the Pope likes to meet some of the visitors, and if I’d be so kind as to step into his private room and wait, the Pope would personally greet me.   

Sure enough, five minutes later, the Pope walked through the door and shook my hand! I knelt down and he spoke a few words to me” 

“Oh, really!  What’d he say ?”   

He said: “Who the Fuck did your hair?”

loneliness wraps

in and around itself

covering her completely -

surrounding her in silence

like a babe in the womb…

her only company

the muffled echo

of a heartbeat

and the splash

of tears on the

floor of her prison

Then she heard it: a sad, mournful sound, as of someone in pain.  Instinctively she turned toward the sound, listening for it to occur again.  A moment later, it did, and somewhere ahead, far in the distance, she saw a small pin-prick of light.  So she walked toward it, despite the pounding of her heart and the voice in her head begging her to turn around and run away, promising her that she would not like what she found at the end.  Fighting herself, she continued moving toward the sound and the light, her pulse and breathing quickening with each step, her arms extended so that her hands, touching the cold, damp walls of the tunnel, could guide her.

The further she went, the colder the air in the tunnel became, and she began to shiver.  She wondered if she had somehow wandered into an underground sewer system.  That didn’t make sense, some part of her brain thought.  The floor isn’t wet, there aren’t any vents in the ceiling (wherever that was), and besides, she had been in bed only moments before.  How had she come to be here?  She stumbled then, and focused on where she was, instead of how she got there.

The moaning was becoming more mournful, more pitiful.  As she moved closer to the dot of light ahead, the desire to turn around grew even stronger, yet she continued on.  Her breathing became shallow, her heart was racing, and she could feel the sweat running down her back.  The closer she got to the sound, the worse she felt.

After what seemed an eternity, she could sense that she was nearing the end of the tunnel.  Oddly, while the moaning became louder, it also somehow became…lower.  Deeper.  More pain-filled.  She was listening intently to the sound, attempting to figure out what it was about it that seemed so familiar.  So intent was she on the moaning that she did not notice the thick piece of glass into which she walked.  It was shaped like an arch; it was thick, greenish, and difficult to see through; like looking through the bottom of an old-fashioned Coke bottle.  She stood there, confused, trying to see past the glass.  She used the sleeve of her bathrobe to wipe at the barrier before her.  Dust and dampness covered her sleeve, but she could at least see a little bit of the room on the other side of the glass.

She was looking into what appeared to be a kitchen.  There was a table and four chairs, a sink, wooden cabinets, and a refrigerator.  No lights were on in the room and she realized that the tiny bit of light she had glimpsed and then followed actually came from a street light outside the window above the sink.  Using the left sleeve of her robe, she swiped at the glass one more time, hoping to enlarge her view of the room.  Now she could see there was someone slumped over the wooden table.  It was a man.  His head was down on the table, and he was muttering to himself.  The thickness of the glass muffled the sound so much that she couldn’t make out what he was saying, only occasionally catching the words, “No”, and “Please.”  Then he began moaning again.  Moaning and shaking his head in the negative.

Confused even more than she had been, she watched him sit there, wanting to offer assistance, to find out who this man was and what was wrong with him.  Who was it?  Why was she here?  What was going on?  She tapped on the glass to get his attention but he was oblivious to her presence.

Suddenly he got up and lurched to the sink.  He turned on the water and splashed his face, shaking his head afterward, the water drops flying from his hair like those coming off of a wet dog.  Then he looked out the window towards the street light.  When she saw his profile, she recognized him:  it was Nick.  HER Nick.  Nick, whom she had not seen in more than twenty-five years.  She reached out to the glass, tracing the outline of his face.  Nick.  After all this time.  How had she come to be here?  What was wrong with him?  Why was he in so much pain??  How could she help him?

She began to bang on the glass in earnest, now, and screamed his name, but it was all in vain.  He didn’t seem to hear her at all.  Tears were running down his face and he continued his low moaning.  When he turned away from the sink, he seemed to be staring at something she could not see.  His face, now hidden in shadow, was difficult to see, but his eyes were open wide with fear, the whites standing out in the darkness.  She looked wildly around the kitchen, trying to see what he could see, to understand why he was so afraid.  And then she saw them:  The Shadows.  Even though the room was dark, she could make out shadowy shapes in the room, all of them moving toward Nick.  Surrounding him.  Nick covered his ears and shook his head no, begging, pleading with them to leave him alone.  Although Nick’s voice was difficult to understand, the voices of the shadows came to her clear as crystal.

“Go ahead, Nick.”

“Do it.”

“You’re worthless.”

“This is the best thing you can do for your family, Nick.  You know you’re nothing.”

Nick continued to shake his head, hands clamped over his ears.  The shadows moved closer to him, hemming him in as they made a circle around him.  He was sobbing and shaking.  The Shadows danced around him, taunting him, encouraging him to…to what?

Then she knew.  They wanted him to kill himself.  A bottle of pills suddenly appeared in his hand.  His head continued to move from left to right and tears continued to stream from his eyes.  Trying to distract him she banged her fists into the glass over and over, screaming his name with each blow.  He never looked up; instead he seemed to fold into himself and she knew he was giving up.

“NOOOOOOOOO!!!!!!!!!!!”  She screamed again and again, watching in horror as he opened the bottle and swallowed every pill.  Nearly hysterical now she pounded incessantly on the glass, screaming his name until her voice was nearly gone.  He still never looked her way.  She watched as he began to lurch around the room, his balance off.  Crying, she could do nothing but stare as he slid to the floor.  The Shadows joined hands and danced around him in glee as his body fell to the floor with a thud, onto his back, his arms spread wide.  As he fell to the floor, she slid down the glass, pressing against it as hard as she could.  Wiping her hair out of her eyes, she realized that her hands were covered in blood from beating on the glass so long and so hard.  She was sobbing uncontrollably and slid, herself, to the floor.

All at once, there was someone beside her:  her son Richard.  He knelt down and pulled her up into his big strong arms, patting her hair and making little shushing noises to calm her.  She grabbed onto him and tried to explain what had happened, though she was difficult to understand through her tears and her hiccupping sobs.  He glanced through the glass to the dead man on the other side.

“Come on, mom.  We have to go now.”  He started to pull her back down the tunnel, back the way she had come.

“No, Richard!  We have to do something. We have to help him –“,  she sobbed, screaming, “Nick!!!” again.

Richard was relentless in his pull.  “No, mom.  We have to go now. It’s too late.  Dad just couldn’t live without us anymore.  C’mon.”  He continued to pull her back down the tunnel, back towards her bed.

She struggled against him, trying to get back to the glass, but she was no match for his size or his strength, so she finally gave  in and let him pull her along, glancing back frequently.  Now there were red and blue lights flashing in the kitchen where Nick lay dead.  Her body was shaking from her sobs, her head was pounding, and she was surprised to look down and see that she was leaving a trail of blood behind her.

Richard just held onto her tighter, half dragging her back, away from the horror she had just witnessed.  “He’ll be okay mom, I promise.  And he will be back.  Now just isn’t the time.  Sh, it’s okay.”

She quit struggling against him, then, and let him lead her back, back, back… until she was at last back in her own bed, where she fell into an exhausted sleep.

music floats through the air

from the open window

swirling around in the breeze

climbing lazily toward the stars

on the coattails of cigarette smoke

drifting slowly from the ashtray

on the table

the tune continues to weave

through the leaves of the trees

yet somehow leaves the listener unmoved

leaning back, staring up,

she can almost see the music rise -

she feels its pull but resists

preferring instead to sit there, alone,

at the table

alone at a table for two

the destroyer, he comes,

in the darkest hour of night,

his blackened soul reeking

of famine and blight

his armor is rusted

his sword, dull and bent

there is little left of him -

his tabard is rent,

filthy, tattered and torn,

pierced with holes from the lies

he’s foisted on others,

ignoring their incessant cries

for “mercy, my lord – mercy”…

his eyes, once his great beauty,

now stare, milky and sightless

since he assumed the duty

of destroyer of lives…

no longer a human

no, not even a ghost -

just a sordid, lost nothing,

the devil’s newest  host.

her mother dressed her

in polly flinders frocks

with little white socks

and patent leather shoes -

her blonde hair

hanging loosely about her shoulders

she would then gather her friends

around the living room

and have her daughter recite

a poem most grievous,

a poem to excite

their minds and emotions -

especially when narrated by one

so young…

as her mother looked on with pride

at her precocious child,

the child, hands behind her back,

a serious look on her face,

paced the room and intoned…

He did not wear his scarlet coat, 
For blood and wine are red, 
And blood and wine were on his hands 
When they found him with the dead, 
The poor dead woman whom he loved, 
And murdered in her bed.

He walked amongst the Trial Men 
In a suit of shabby grey; 
A cricket cap was on his head, 
And his step seemed light and gay; 
But I never saw a man who looked 
So wistfully at the day.

I never saw a man who looked 
With such a wistful eye 
Upon that little tent of blue 
Which prisoners call the sky, 
And at every drifting cloud that went 
With sails of silver by.

I walked, with other souls in pain, 
Within another ring, 
And was wondering if the man had done 
A great or little thing, 
When a voice behind me whispered low, 
“That fellow’s got to swing.”

Yet each man kills the thing he loves 
By each let this be heard, 
Some do it with a bitter look, 
Some with a flattering word, 
The coward does it with a kiss, 
The brave man with a sword!

then the little girl would stop,

curtsey, and float away…

yet to this day, those words

stay with her, have colored her whole life

with doubt and suspicion –

Yet each man kills the thing he loves 
By each let this be heard, 
Some do it with a bitter look, 
Some with a flattering word, 
The coward does it with a kiss, 
The brave man with a sword!

**italicized words from “The Ballad of Reading Gaol” by Oscar Wilde

cuz to you it was all just a game -

so how can I feel the same

way I did when I carved your name’s

first initial into my palm?

what is wrong in my brain,

in my heart – why does the pain

loiter and remain

drowning me – a hurricane

that possesses me, obsesses me?

i just keep telling myself those

christina perri lyrics…

I learned to live

half a life…

and who do you think you are,

runnin’ round leaving scars,

collecting your jar of hearts

and tearing love apart?

you’re gonna catch a  cold

from the ice inside your soul…

so don’t come back for me

don’t come back at all.

and yet the thought of that

terrifies me more than anything…

and i STILL don’t know what i did wrong…

where you are

how you are

what you are

hope you’re happy

hope you’re not

wonder if you give a thought

to what once was

and what might have been

a place we will never see again…