Meniere's– "As The World Spins"

This is the short story I wrote about why I am in Second Life.  Galar is Gaelic for Disease.  Happy snappies were staged in Second Life to add to the story.  The story was published in Life To Life Magazine Summer 2009.

The Damsel Fights Back

The Damsel And The Dragon

On the heels of the Queen’s death and the conjoinment of Prince CuChulainn, Princess Emer and Duchess Ryanne, who were now ruling over of the kingdom, came an influx of new faces migrating to the Islands that are called Lost and blending into the fabric of the kingdom deeply enriching the Flanagan Clan.  One of these fresh faces belonged to a comely damsel.  She walked into Flanagan’s Pub one cold winter evening to attend a festive gathering and to satisfy her curiosity about the Clan and other people in the kingdom.

Putting on a name tag that simply read “Parker” she returned greetings with all the confidence and stability of a newborn kitten.  Parker was careful not to make eye contact with any one, but remained on the sidelines watching in wonder and awe.  The crowd was dense and she knew no one in the room.  Slowly she meandered around the perimeter of the amazing ornately plain room.  She studied with care the textures and moldings that would make this ballroom come alive even if no one was present.

Stepping through a side door the damsel had her breath taken away.  She was in the original part of the pub and found herself reaching out and touching the smallest details with tender fingertips.  Studying the richness of every crease and crevice, Parker lost all track of time.  She allowed the music wafting in from the outer ballroom to lull her further into a mesmerizing trance that propelled her into the speculation of the history of the fine craftsmanship enveloping her.  While her fingers ran along the ivory keys of the piano she did not realize her solitude had ended.

As she caressed the handiwork all around her, Parker was unaware of eyes studying her.  She jumped at the greeting bestowed from behind.  Turning toward the door, Parker was face-to-face with Prince CuChulainn and returned his greeting apologizing if she had entered a room not open to the public.  The prince assured her that all rooms were opened for exploration.  He went on to apologize for interrupting her reverie but explained that he was not given to crowds and much preferred smaller gatherings.

The pair chatted for a while then the prince went into a detailed history of the pub.  Lovingly he explained how the queen had desired such a place for the Clan and all those in the kingdom to come together.  Parker drank in every historical notation accounting the construction and dedication of the pub, its ballrooms and gardens.  She did not want to miss one iota.  The more the prince talked the deeper the damsel drifted into the manifestations that are the Flanagan Clan.  In the same reality the deeper the prince took Parker’s thoughts into his recitations, the further she went from the nightmare in her own world.

One cold winter night in the warmth of a cozy pub, a friendship was formed between two unlikely souls.  Parker and the prince would spend hours together talking and sharing their thoughts and their joys.  Enthusiastically the pair explored various parts of the kingdom and enjoyed the richness and beauty therein.  But, always close in the damsel’s conscience was the battle looming that she fought every day.  Wanting to enjoy every blissful moment, the damsel knew she could not reveal to anyone in the kingdom (least of all the prince) that a dragon had come to claim her and threw her into a vicious battle that she fought alone in her own world.

Years before, without warning, Galar entered the damsel’s life.  At first she did not think the dragon powerful and venomous.  Time proved her wrong.  However, knowing his strength would not have given Parker any foothold to banish him from her life for good.  In the beginning Parker did not know what she was fighting and knew even less about how to fight dragons.  Instead of fighting, the fair damsel gave up and ran away looking to find replacements for all that Galar had stolen from her.  In her apparent flight from reality, Parker found herself continually on the Islands that are called Lost and enjoying the companionship of a prince.

Day after day the sweet damsel entered what she called her fairytale life.  It was there that she could be herself again, be whole.  In her fairytale life she could run and dance and even spread her arms to fly.  There, Parker could control her own life and not be concerned with Galar looming behind rocks or lurking in caves waiting for a chance to spring, talons extended and deliver more crippling blows to her already fragile body.

In the fairytale land of the Islands that are called Lost, Galar dared not enter, but the moment Parker would step out of the fantasy, away from the beauty of the land and the companionship of her princely friend, Galar was waiting.  His hot breath steaming through flared nostrils would cause her head to spin.  Galar is a sneaky dragon and does not fight fair.  He has a way of leaving his prey alone and just watching, waiting for just the moment that the intended victim would feel confident that he was finally gone and would plague them no more.  Then at just the perfect moment Galar would extend his talons and use the full force of his mighty arm to knock the victim off their feet and leave the poor soul laying there writhing in pain.

One day, in the early spring of friendships blossom, a messenger arrived while Parker and CuChulainn were exploring gardens on the far side of the kingdom.  Parker watched helplessly as news delivered to the prince that a knight, who was closer to him than a brother, had been murdered by a dragon.  It was speculated that this dragon was of the same nest as the one which claimed the queen and another knight who was a boyhood friend of the prince.  In his grief the prince ran off for the palace leaving the damsel to stand shivering with worry.

Parker return to her home and watched the day the prince rode off on his steed to hunt down the dragon which dared to enter the kingdom and take the life of one so loyal as Sir Jeff.  Parker waved as CuChulainn rode by, but still buried in his grief the prince did not see his friend.  In her heart of hearts, Parker knew she would never again spend time with the one who had given her many hours of relief from Galar.  Demurely patting away the tears rolling down her cheeks with her lace handkerchief, she slowly turned and walked back into her home.  Her reality.  Her own personal battleground.

Deep concern for the prince allowed Galar another entrance into Parker’s world.  She was already weakened from previous battles with her fierce enemy.  Now, her heart broken, Galar wasted no time hurling his fiery darts in just the right places to send Parker crumbling to the ground.  There was no one there to catch Parker as she fell and no one to help her fight this dragon she did not understand.  Now, she no longer had any one to help her escape his relentless torment even for the briefest of time.

One brisk autumn day, lying in a sea of her own tears, Parker found herself curled up like a kitten shivering in pain and fear.  Slowly, she pulled herself up.  For the moment Galar did not appear to be around.  Tattered and scarred, the once fair damsel knew in fractured clarity that she needed to fight back.  After bathing, Parker put on fresh clothes and went in search of a friend.  Stepping back into her fairytale world she reacquainted herself with others she had enjoyed the company of in time long since reverted to memory.  Spending time in her fairytale land with acquaintances she felt comfort that she hadn’t felt since her time with the prince.  Once again, Parker had found an escape for brief interludes from Galar’s ferocious attacks.

Slowly, the damsel regained the resilience she knew before Galar entered her life and wreaked havoc.  As she felt surer of her footing she also found herself trusting.  She began to share information of her battles with those who had taken her in as family and friend.  Neither the Flanagan Clan nor the royals had fully accepted her, save the prince alone.  She was a commoner and not a clansman therefore, they could never have fully accepted her.  However, in a quaint little village known as the Bee Hive Township, there were those who offered hands to hold and arms to lean on whenever Parker was weary from her battles’ rage.

Seven souls welcomed Parker into their world and in return she began to trust their strength and learned to use it during the ensuing skirmishes with Galar.  Even the times that Galar would have the upper hand, Parker knew she was not alone.  There were seven angels who were each in their own way, there to catch her or to help her tend her wounds.  Over time, in the fortitude of a few, Parker found herself winning the battles more and more.  Galar turned his attention from the damsel with the help of a gentle wizard who truly knew how to fend him off.

Parker would return to the Islands that are called Lost from time to time and continued to be concerned for the prince.  However, CuChulainn faced his own dragon and the sweet damsel held vigil against hers.  The season’s changed as they always do, but Parker could now stand in both her fairytale world and her real world with trust in her heart with the weapons of friendship and love to wield whenever Galar came to prey.  Deep within the damsel knew this dragon would never go away.  But then again, neither will friendships found so true.

June 19, 2009

© DL Bach

**DISCLAIMER – The characters in this story are people in Second Life.  I am not, in any way, attempting to mock or do harm to any deities.  The people chose their own names and I just wrote my story.

I have a lot to get done in the next two weeks so this will probably be the last words I post here within Blogtopia.  Some have said they read my Meniere’s Blog regularly.  Either they missed my Letter Of Resignation, or they just didn’t care.  Since I am an advocate of giving people the benefit of the doubt, I will believe that they just lied to me in saying they read it regularly.

I spent last night in and out of sleep.  When I was out of sleep I was thinking about everything that still has to be done.  I woke up thinking about this post.

There are those who will wonder why I didn’t come to them with all of this.  Well, how could I bring you my tears when you didn’t want to share in my laughter?  In my life I have had one thing in my heart that I have striven to bring forth to the world in my meager words and that is peace through understanding and acceptance.  The world has not listened.  My heart is not to be heard.  The world is not ready to hear what is in my heart, for it would rather hold onto its anger and hatred.

Perhaps in my next life, the world will be ready to hear what is in my heart.  I believe that the intent of the heart follows you into your next life, so perhaps I have been trying to get the world to hear my heart for generations.  Not this life, but hopefully the next.  If you desire to me honor after I am gone, then remember the message of my heart and learn to accept others no matter the differences and understand that everyone is a human being above all else.

True peace will come when people move beyond the fears of what is different and accept everyone as individual human beings without the anger and hatred that continues to bind this world through ignorance.

For 36 years, I have taken care of others.  At the age of nine I was cooling, cleaning and doing laundry for a family of five.  I remember Grandmaw standing me on a milk crate to teach me how to cook and wash dishes.   She even stood me up there to watch how she used her old wringer-washer.  Even though most tasks were heaped on my by my mother and step-father, it wasn’t like work when Grandmaw was by my side.  I remember the day she lowered her ironing board to teach me how to iron.  I would dream, even at the tender age of nine, of one day having my own family.  I wanted lots of children, at least enough to field my own softball team.  I didn’t just dream of babies in my arms, but also of being pregnant and giving birth.

The beginning of September 2008, I set an appointment with my neuro-otologist to have grommets inserted into both of my ears for the purpose of using the Minette Device.  The device would cost me $3500 out of pocket.  At the time this wasn’t a real major issue as I had some money in the bank and could cover it.  However, two weeks after setting the appointment, I was told that ten of the twelve employees at work (including me) would be losing their jobs as of October 31, 2008.  I was devastated and and contemplated not having the procedure.  Friends I discussed this with urged me to go forward with it and if I ran into financial difficulty due to all of it, they would be there for me.

I have always been taught that if you treat others with respect and in a dignified manner then it will be returned to you.  In other words, “You reap what you sow”.I have always done my best to treat others respectfully.  Even those who have done me ill I treat at least cordially.  After all we are all human beings and must get on together to survive on this planet.

Friday, I went for my three month check-up with my Otologist.  He came in with his nurse and nurse practitioner and asked how I was doing.  After a bit of banter I told him that I am still looking for a one-way ticket to Iraq.  a little more banter and he realized I wasn’t joking when I asked him to schedule my autopsy I have been requesting.  He preformed the exam and then I stood there and proceeded to throw a bit of a tantrum.

I know what you are thinking, but put away your visions of a two-year-old pitching a fit.  I don’t scream, yell or stamp my feet (I’d fall down if I tried).  In fact, the worst I have done in recent history was call the workers at Hardee’s a bunch of plebeians.  I went on to say, through a veil of tears, that I am angry, bitter and just plain unhappy.  The trio only watched, listened and tried to answer my questions.  My doctor felt this long over due as well as educational for his green nurse practitioner.

This past weekend I updated my computerized Medial Alert Card (ICE).  While I did this I was prompted to add my Living Will and pulled it up as well as a form to complete my Last Will and Testament.  I went back through the pages of my life as I completed these forms.  I remembered the promises of others along with the promises I made to myself.  It seems all those promises were empty.  I would like to think that those who made those promises to me made them in good conscience.  However, from here, looking back they are empty and without the prospect of ever being filled.

I had dreams for my life.  I wanted to be a wife, mother and ultimately a grandmother.  It was my deepest desire to pass on to my children and grandchildren all I learned from my grandparents.  But in one god-forsaken diagnosis all my dreams were shattered and fell to the ground around my feet.  There is no shoulder for me to cry on.  No arm for me to hold to steady my balance.  I am angry that there is a disease that has no known cause, no known cure and not very much research being done to rectify this.  this leaves me unhappy and alone.  The loneliness has bred bitterness.  If only the promises had not been empty perhaps some dreams would not have shattered.

Anyone with a chronic illness or close to someone with a chronic illness is all too familiar with the feeling of being helpless.  I feel that way so often I sometimes think I don’t have any other feeling inside me.  Last night I was in Second Life® and chatting with a friend who also has Meniere’s Disease.  To start, Second Life® is a virtual reality world on-line where I got my life back after the dragon of Meniere’s invaded.  I was able to use my avatar to do things that I could no longer do in Real Life.  You can check out my Second Life® blog for more about that world.  The gentleman I was chatting with was experiencing issues due to Meniere’s and was also expressing some frustration regarding his girlfriend’s difficulty understanding what he goes through; but she tries her best to be as supportive as possible.  I recommended he read this blog and also check out a DVD put together by another person with Meniere’s to help loved ones and those new to the illness to better understand.

The thoughts for this blog post have been forming for a while, then last night they were coming closer to the surface.  This morning I had a bit of a FaceBook e-mail exchange with another friend and helping to educate her about Meniere’s.  Again, as I was confidently typing my responses to her I couldn’t help but feel so utterly and completely helpless inside.  Sometimes I have to step back and look at myself.  I have the ability to display to the world the most confidence and surety while inside I am falling apart at the seams.  Where do the helpless go to get help and support?  What can we do to sure up the rupturing dams within?

There are some forums on-line and for some of the lucky there are local support groups you can attend in your area.  I have been part of these forums, but there are no local support groups to attend.  I have been approached several times to start one in this area.  However, giving how I feel and knowing it would be common, I believe it would be difficult as we don’t always feel like sitting in a room with others trying to be supportive and therefore we opt to just stay safe and comfortable on our couches and beds.  Sometimes we are supported by spouses, children, parents and others who are there or come over to help out.  I survive on my own.  I have been trying to be supportive of a few others with Meniere’s who need a shoulder and an ear (not that I have much left in the way of ears **insert chuckle here**).    I am glad that I can be here the best I can for anyone who needs me.  Just ask.  If I don’t have the answers I will try to find them or direct to the answers the best I can.

Let me go back to something I mentioned earlier.  Danny Pancy is a gentleman who has Meniere’s Disease.  He is also a photographer.  He put together a 20 minuted DVD to help others understand what we with Meniere’s go through.  The only audio is white noise since we have tinnitus in our ears 24/7.  Mr. Pancy has used his talents as a photographer and the wonderful technology available to distort photos to help display the way we view things.  I have shared this DVD with others so they can better understand.  It helps them feel a little less helpless.  Check out Mr. Pancy’s DVD on his website http://www.shutterfreaks.com/Pancy-Menieres/contact.htm.

For those who have Meniere’s we know there is really know way to feel less helpless when we are in bouts.  For others, those who know us and care about us, staying away is not the way to help us or you feel less helpless.  I know, too well, intimacy with loneliness.  This adds to my stress, but I keep going on knowing it will always be this way for me.  But I plead with others to reach out to those you know with Meniere’s and educate yourself, not for the purpose of trying to ‘fix’ them, but for the sheer purpose of trying to better understand.  Sites like http://www.menieres.org/ and http://www.vestibular.org/ are great sources to start with.  We just want to feel normal and feel like those who cared about us before the dragon invaded are still there for us and still care.  Don’t be afraid just because we can’t do the things we used to be able to do.  There are still other things we can do, like sitting and chatting about life and things in general.  If you treat us differently, especially by disappearing, then to you we become the disease.  Show us that we are still human beings worthy of your time and your friendship.  The helpless feelings may never totally disappear, but they can be diminished in all of us.