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
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.

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.   

Loughcrew Cairns - the stairs.jpg

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/

"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.

 

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 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 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.

 

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.  


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.

 

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

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
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