One word changed my life

"Well, I know why your leg won't heal.  You have cancer."

I felt the world fall out beneath me.  My stomach sank.  All of the air was sucked out of my lungs and everything suddenly became an odd shade of grey.  

Photo by vitanovski/iStock / Getty Images

It started out with a cut on my leg that refused to heal.  It would reach a point where I thought it was healing, then it would break down again.  My intuition told me that something was really wrong, but I was too fearful to seek help.  So I stubbornly insisted that I was fine.  

Finally, I went to the doctor who referred me to wound care.  I went every week and they tried every treatment they could think of.  This went on for the better part of a year, during which time they tested me for a myriad of things that could be preventing me from healing.  They also drilled me on nutrition and suggested I wasn't eating enough fruit and veggies.  Now, I admit my diet is not the best on the planet, but it's far from what I would consider unhealthy. I was also asked about my activity level, what I could be doing to interfere with the healing, etc..  At any rate, we would soon learn that what was going on was not in any way my fault.

I was referred to a plastic surgeon and had the initial surgery in May of 2015, which consisted of a skin graft.  It never fully healed, but I was assured that I just needed to be patient.  By the time I returned from Ireland in October, the site was falling apart once again.  I was heartbroken.

After the cancer was discovered, I had another surgery.  This time the goal was to to remove the affected tissue.  It required at least two weeks of recovery, much of which was spent in bed.  I had this misguided notion that I would get a ton of writing done and catch up on the list of books I'd been meaning to read.  The reality of the situation is that I was in so much pain I could barely function.  I didn't like the pain killers, so I just quit taking them after a couple of days and slept as much as I could.

I had a follow up appointment and the night before I couldn't sleep.  I had a feeling that something was wrong.  Very wrong.  Turns out, I was right.

10th Century Riddle concerning the manufacture of vellum

One of my enemies ended my life

sapped my world strength, afterward soaked me

wetted in water

set me in the sun, where soon I lost

the hairs which I had

and then the hard knife edge cut me

Fingers folded me, and feather of bird

traced all over my tawny surface

with drops of delight

Then, for trappings a man

bound me with boards, bent hide over me

glossed me with gold, and so I glistened

wondrous in smithwork, wire encircled

Say what I am called

Useful to man

Mighty my name is

A  help to heroes, and holy am I

 

Author Unknown

 

A day at Trinity College, Dublin

Each footfall carried her further into the past

the cobblestone under her feet

grounding

 

Ancient vibrations

circulating

filling her with a sense of awe

 

Willing herself

to still her mind

and absorb

 

Microscopic brilliance

left behind

but not abandoned

 

Companions and adversaries

grand inspirations and hushed conversations

echo through the ages

 

Monastic manuscript

spiritually inspired artistry

calfskin transformed

 

Survivor of raids and wars

decorated with indigo, lead, and copper

now speaks quietly from beneath a class enclosure

 

The human tide

moving ever forward

building up momentum

 

Once again

stilling her mind

wishing them away

 

She stands among

the ancient texts

piled to the ceiling

 

Carefully guarded

by marble busts

and the spirits of those who once were

 

The circuit completed

she steps out into the sun

forever changed

 

Carrowcrory Cottage Part 2 - Scones and Harps

The cottage was warm and filled with the scent of freshly baked scones.  Claire stood at the table, her hands covered in dough, dressed in flowing green velvet.

"Oh, I hope you like it.", she said, over and over.

They ate plate after plate of scones with butter, jam and cream.  She was happy to chat with Claire, while helping her prepare the feast.  She even went so far as to joke,

"Look!  I'm jammin' with Claire."

When she rose from the table, she was so full she wondered how she would ever make the journey back down the hill to the bus.  

They made their way to the adjoining room.  There, they found her harps patiently waiting.  

"I hope you like my music.", she said.

In the midst

of that deep night

I was awoken by

the screeching fox

and the night

was so fragrant and silent

said I couldn’t bear

to let it pass in slumber

 

So I walked by the fields

and through the misty night

My way was made clear

through the dark depths of the wood

where the shadows mingle

in a thousand ways

and the light of the moon

sheltering me from the dark night

 

I see him standing

waiting there for me

and his frame is so cold and far away

I wish he’d take me tender by my hand

and through this misty night

we’d walk together

 

The horses raise their heads

in question

but there is no pain here

here

 

And as I stare upon his perfect face

and see the fathoms deep within his eyes

the sadness, the human loneliness

he says with a sigh

things are not right

and he goes from me

 

And the dawn

slowly chasing away the moon

and it stares at the rising sun for a while

 

like my lover

fades with the dawning

fades with the dawning

fades with the dawn

"Symbolic" by Claire Roche

http://www.clairerochemusic.com/

Claire's music brought many of the Pilgrims to tears.  She sat there, unable to do much else.  This magical creature was so talented, yet so humble.  

She chose two CD's from the pile, paid John, then stood in line to have Claire sign one for her.  

"Thank you for jammin' with me."

The Cailleach at Carrowmore

It was early morning when they disembarked at Carrowmore.  The visitor centre had just opened, so they would be part of the first tour of the day.  

A smaller stone, placed there to balance the larger, has been there for thousands of years.

She learned that Carrowmore cemetery is home to 30 passage tombs.  These tombs were more than simply monuments or the dead.  They were a sort of status symbol for the living.

As she followed along the tour, she found herself drawn to the surrounding views.  Imagine, living so close to such a sacred place!  She wondered if those in the area were constantly aware of the ancient energy emanating from this space or if they had simply grown accustomed to it, taking it for granted.

They were told of the Cailleach of the North, who brought winter to the land and the Cailleach of the South, who ensured the return of spring.  Everywhere you turned, the Goddess had left her mark.  

They were told of the "footprint" on the stone leading into one of the cairns.  They say that this stone was chosen and carefully placed there because of that mark.

They walked down the stone passageway and stood around the tomb in the centre.  There they were told of how, in ages past, stones were chosen and transported here in order to create these structures.  To honor their ancestors.  

She tried to feel something, but the ancients were distant.  The energy was there, of course, but it was faint.  Could it be that too much had been taken and not enough given back?  

The Hill of Tara

The crows call out to me

“She is here!  She is here!  She is here!”

Not meaning me, of course, but Her.

The one.  Herself.  The Morrigan.

A relationship that I did not seek out

but found me just the same.

An energy so powerful, so ancient

that once sensed it cannot, will not be ignored.

I make my way through the gate, past the graveyard

the energy rising to greet me

Onward to the grassy path

a brief pause, and then I climb

All the while the crows call out

“She is here!  She is here!  She is here!”

I silence my ego

the part of me that will question everything

Casting doubt and throwing shade

destroying the sacred

in favor of insecurity

keeping me stuck

Connecting with the land

and all that occurred

since it all began

I wait

She does not speak,

but rather

introduces Herself

with a nod and a knowing smile

The crows are silenced

welcoming Her into the space

waiting

for Her instructions

She retreats

and

sensing this

they take to the sky

“She is here!  She is here!  She is here!”

Loughcrew Part Two - The Cairns

It was just after 6 am when she found herself standing at the bottom of the stairs leading up to Loughcrew Cairns.  She was well aware of the climb.  About 2 kilometers from the spot where she was standing to the Cairns themselves.  It was a steep ascent, but she was determined not to let it get the best of her.  There was no way that she would allow herself to remain on the bus while the others explored this ancient landscape.   

She dug through her backpack, found her headlamp and put it on.  Then, backpack secured, she started her ascent.  She moved slowly but with purpose and before she knew it, she was moving through the gate at the top of the stairs.  It was then that she saw the path and realized she had quite a way to go before she reached the top.

She continued on, pausing every so often to catch her breath and gaze out over the landscape which was slowly revealing itself as dawn approached.  She turned to see who was still behind her.  A strange voice called out, 

"Please, turn off your headlamp!"

Embarrassed, she obliged, replacing it in her pack.  It was then that she noticed she didn't really need it, as the faint light was more than enough for her to find her way.  As she continued her climb, she reflected on how far she'd come and how strong she'd become.  Would she have had the courage to attempt this even a year ago?

After what seemed like forever and yet no time at all, she arrived at her destination.  The Cairns.

"The Cairns are megalithic structures originally built about 4000 bc as burial chambers."  http://loughcrew.com/cairns/

She turned and surveyed her surroundings, marvelling at how far she climbed.  She couldn't help but feel proud, knowing that this was but the first of many tasks set before her that she was now certain she was capable of.

The Pilgrims gathered together to welcome the rising sun.  They stood side by side, listening to the Bodhran as it kept beat with their hearts and with the heart of the land.  The sun, glowing a deep orange, slowly rose.  Then, just as slowly, it immersed itself headfirst into the clouds.  The moment was not lost on them, as each silently reflected on what they had just witnessed.

After a time, they dispersed, quietly making their way around the Cairns.  Careful not to disrespect the site nor disrupt others who gathered there, they paid their respects to those who came before and the land where they last laid their heads.

Taking what would soon feel like her rightful place at the back of the pack, she made her way down the hill toward the stairs.  It felt like a journey out of another world and back into the familiar.  Thankfully, the descent was slow and she was able to acclimate herself.

As she walked the path, she passed a group of sheep grazing.  They paid her no mind.  These were not the first Pilgrims the sheep had encountered, nor would they be the last.  Then she spotted a tree.  It beckoned to her, whispering secrets.  Belief in Faeries was strong here, as was their energy.

She felt the sort of calm and piece that so often eludes us.  Normally, she would resist leaving.  But somewhere inside her she knew that the feeling would remain and the connection would deepen as they continued on their sacred journey.

Loughcrew, Part One - The House

The sun had already set by the time the bus arrived at the gates to Loughcrew House.  As she waited for her suitcase, she stood in the dark, quietly admiring her surroundings.  

Bags unloaded, the Pilgrims followed the pathway up to the house.  The sound of her suitcase rolling along the drive seemed much louder than it probably was.  She stood for a moment, marvelling at the entryway.  Passing through to the house itself, she soon made her way through a maze of rooms, each more impressive than the last.  

She half-expected someone to walk through the mirror, inviting her into a magical world.

The Pilgrims were weary and eager to get settled in their rooms.  She was directed through the main living area and found herself in a lovely library.  She imagined enjoying a cup of tea and a good book, but alas there would no time for that.  

When she opened the door to her room, she was delighted!  It was exactly as she saw on their website.  She had to remind herself they would only be spending one night here and she was determined to make the most of it.  

The Pilgrims made themselves at home in various areas of the house.  Some turned in early, others gravitated toward the kitchen, a few ventured out onto the grounds.  A fire was lit in the Great Room where she settled on one of the couches.  Soon, others gathered to enjoy the warmth, admire the house, and get to know each other a bit better.

She could have sat staring at the fire all night.  But with a sunrise ritual planned, combined with the hike up to the cairns, it was best to turn in and get as much rest as possible.  

We Saw a Vision

A hush fell over the Pilgrims as they entered the Garden of Remembrance.  A solemn but beautiful place, it was one of quiet reflection.  Her eye was immediately drawn to the large sculpture at the top of the stairs.  A nod to the Irish Legend, "The Children of Lir".   

The pool guides your eye upward toward the sculpture.

"The Children of Lir" (Clann Lir / Leani Lir), who were the victims of their stepmother's jealously and as a result, were cursed to live as swans for 900 years.

The park is a memorial to all those who fought and died in the hopes of attaining Irish Freedom.  

Inscribed on one of the walls is the poem "We Saw a Vision", written by Liam Mac Uistin in 1976.  This would not be the last time she wished she had learned Irish.

"In the darkness of despair we saw a vision,

We lit the light of hope and it was not extinguished.

In the desert of discouragement we saw a vision.

We planted the tree of valour and it blossomed.

In the winter of bondage we saw a vision

We melted the snow of lethargy and the river of resurrection flowed from it.

We sent our vision aswim like a swan on the river.  The vision became a reality.

Winter became summer.  Bondage became freedom and this we left to you as your inheritance.

O generations of freedom remember us, the generations of the vision."

"You can never be overdressed or overeducated."

My introduction to Oscar Wilde was in the form of two animated short films - "The Selfish Giant" and "The Happy Prince".  Growing up in rural Alberta, we only had three tv channels and one of them was French, which is why I am astounded that I had the opportunity to see them at all.  I can't recall when exactly, but I do know that I watched them every year around the same time.  Something tells me it was during the holiday season, but I could be mistaken.

At any rate, both films entranced me.  Although I could recite the narration by heart, I was still brought to tears every single time.  

Later, I saw an adaptation of "The Picture of Dorian Gray" and once again found myself drawn in.  What is it about Oscar Wilde's work that has not only survived, but continued to thrive over 100 years later?  What is it about the man that intrigues and delights us so?

The famous Oscar Wilde Statue in Merrion Square, Dublin.  

No literary tour of Dublin would be considered complete without including Oscar Wilde.  I was giddy as a school girl (funny how he still has that effect on people, wouldn't he be thrilled?).  Not only did I see (and touch!) the statue, but I also stood in front of his residence, which is located directly across the street.

Fangirl moment!  I don't typically enjoy having my photo taken but how could I not?  I would never forgive myself.

I also had the opportunity to visit Trinity College, Dublin - where Oscar Wilde (among others) studied.  I'll tell you all about it later.  In the meantime, thanks to YouTube, you can watch "The Selfish Giant" here:  

https://www.youtube.com/watch?v=8jtLTS7T8cc

and "The Happy Prince" here: 

https://www.youtube.com/watch?v=8Aank8bDtcE

The truth is not what you know, it's what you believe.

Unless you are a hard-core Colin Farrell fan, you may have never heard of the film “Ondine”.  While an admirer of his work (let’s face it, he’s easy on the eyes), I have to admit this title was a surprise to me when I stumbled upon a copy for sale in a little video rental place a couple of blocks from my office. 

“Ondine” is the story of a fisherman named Syracuse, who lives in a small Irish village.  His simple life suddenly becomes complicated when he catches a half-drowned woman in his nets.  She’s frightened and seems (for lack of a better term) like a fish out of water.  So he agrees to let her stay in his mother’s old cottage and to tell no one.

His nets suddenly fill with very little effort and it seems fortune is finally on his side.  His daughter is convinced that this beautiful stranger is a Selkie.  One of the seal-people emerging from the mists to bless their family and prove to everyone that they are not simply a myth, that wishes can come true, and that anything is possible if you believe.

But this isn’t a simple Faerie Tale.  Ondine has secrets of her own.  After falling in love with Syracuse and starting a new life, her past comes back to haunt her and threatens everything she now holds dear.

Much like the little girl in the film, I desperately wanted to believe.  The story took me on a journey I thought I was prepared for, but soon realized that it would not be anything like I expected.  I felt more than a bit betrayed, but then realized that for the first time in a long, long while I had no idea what was coming.  Not unlike Syracuse, who followed his heart only to realize it may end up broken and scattered like the sea glass that washes ashore after a storm. 

It left both Syracuse and I asking ourselves the same question.  “Are you willing to see it through, no matter what?”

Writing this post cost me a spoon.

I am not a stupid person.  As a matter of fact, I possess above average intellect.  Which is why "fibro fog" is so damn frustrating.  It affects my memory in odd ways, such as thinking “elephant”, while saying “Edmonton” (true story).  I know that the word I am saying is wrong, but my mind won’t release it so that the right word will come.  As I said, I am not stupid.  But I have challenges that (at times) may make it seem as though I am.  I sometimes have a hard time remembering names of people and places.  For example, although I have a list and have been researching my trip to Ireland, if asked I may not remembered the names of all the places I am going.  If I have an appointment, I make note of it in no less than two different calendars and will often call to confirm the day before.  Social situations are extremely stressful for me because I often find myself overwhelmed and my brain seems to just shut down to the point that I can barely follow a conversation.  I am not really certain why I am affected this way, nor why it seems to be so bloody random, but have learned to accept it.  One thing I have noticed is that if I feel pressured (people interrupting me, trying to finish my sentences, talking over me, rushing me, becoming impatient or getting annoyed) then the fog just get worse and I usually cut the conversation short.

I get cranky if I am interrupted and my initial reaction to change is not always positive, so I work very hard to ensure that I am not bringing negative energy into whatever space I happen to be occupying.  I have to budget my energy (or “spoons”) carefully in order to ensure that I don’t wear myself out, causing a flareup which can keep me bedridden for days or forcing me to push through it because I don’t have any choice.  “The Spoon Theory” by Christine Miserandino explains it well and while she is discussing her challenges with Lupus, the theory applies to anyone dealing with chronic illness. 

http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/

Photo by thomas-bethge/iStock / Getty Images

I only get so many "spoons" a day...

One of the reasons fibro is so hard to diagnose is because symptoms are random and no two people are affected in the same way.  This is also why there is no “treatment” and no cure.  For some, coffee is the only way they can manage.  For me, caffeine is a trigger, causing unbearable agony.  Some people are very “physical” or very vocal.  To someone with fibro, a playful punch in the arm feels like being slammed with a 2x4 and being exposed to someone’s excited screaming/squealing is absolute torture because it actually causes physical pain.   Odd as that may sound, my skin feels like someone is rubbing a cheese grater on it when people around me are screaming/yelling/squealing.  It’s not that I don’t share your excitement; I just can’t express emotion in the same way you do and continue to function like a somewhat “normal” human being.  This is why many people with fibro tend to be homebodies and prefer quiet activities.  Most things others consider “fun” are simply far too overwhelming and (quite frankly) would cost more “spoons” than I have to spare.

Interestingly enough, I rarely lose anything, multitask like a mo-fo, can tell you the contents of almost every shelf/drawer of my home, remember song lyrics, and quotes from films/books (may not always remember the name of the film or the actor’s names, though).  I also seem to be a walking encyclopedia for random facts that even I can’t remember how I came by.  I am a voracious reader.  I am always writing something (either work related or personal), can tell you if I wrote a commercial just by listening to it (because I can usually remember the day I wrote it, down to what I was wearing), and currently have three books in various stages of development, although lately I haven’t had the energy to sit down and work on them.  I often wonder what I would be capable of if I wasn’t affected by fibro, because I am pretty ding dang fabulous in spite of it!  BAM!!!

My health has improved dramatically since I was finally diagnosed 6 years ago and I am determined to continue to heal.  So if you see me struggling, it isn’t due to lack of intellect because I am far from stupid.  But I am not going to let it defeat me.  I am also not seeking sympathy or pity, simply trying to spread awareness and understanding.  Thanks for taking the time to read my post.  Feel free to share it, if you think it will help someone else.  

You do not determine my worth

I just read a post on another author's Facebook page.  Apparently someone has been stealing her blog posts and passing them off as his own for some time now.  Someone responded by saying that "on the bright side", this action should be viewed as a compliment.  I couldn't disagree more. 

For far too long, artists have been led to believe that having their work taken and used without their permission and without being paid is some sort of warped honor.  It isn’t.  Regardless of how simple you may think it is, a tremendous amount of hard work goes into creating something.  To do all that and then have the courage to put it out there, only to have it stolen and used for purposes other than what you intended isn’t just heartbreaking.  It’s a crime.  The copyright laws are in place for a reason and yet we seem to feel we’re not even worthy of standing up for ourselves.

If you value my work enough to use it, then pay me for it.  Oh, and I will determine the value thank you very much.  Just because you offer to pay me 1/3 of my fee doesn’t mean I should fall to the floor and thank you profusely.  If you can’t afford my rates, then don’t hire me.  After all, you don’t go into a car dealership and offer them “exposure” in exchange for that 25 thousand dollar SUV you’ve had your eye on.  Pretty simple concept.

If, for some reason that only you could possibly justify, you feel that you shouldn’t have to pay me then at the very least credit the source (a link to my website is a good start) so that I may possibly derive some freelance work out of it.  Visual arts, films, music, poetry, blog posts – all of it is protected by copyright and NO, it’s not OK if you use it without permission or licensing because “everyone else does it”. 

The YouTube video I posted below features Harlan Ellison http://harlanellison.com/home.htm and he uses some colorful language, so you’ve been warned.  Some may think he is overreacting, however I not only understand his point, I agree with it.  If we do not value what we bring to the proverbial table, two things will happen. 

1.  We will cease to be invited to the table.
2. Our work will never be valued by anyone, including ourselves.

For far too long, writers have been lead to believe that they should feel lucky that anyone is paying any mind to anything they have to say.  That we are fortunate anyone will even deign to hire us.  Until our attitudes change, nothing else will. 

https://www.youtube.com/watch?v=mj5IV23g-fE