This question gave me pause.  I could have burst out with all kinds of things, but held my tongue.  So many people mean well and just say what they think they should.  However, just as helpless as others feel, those of us with Meniere’s (or any chronic illness for that matter) feels just as if not more helpless.  For me, I think it is those who just sputter out “feel better soon” or “I’m praying for you”.  I know these comments give some sort of peace to the speaker, but not to me.  It has nothing to do with who is speaking.  In general, I feel a warmth knowing that someone cares enough to attempt to help me feel better.  It is my head knows that I will feel this way at some level until someone finds a cure for this (thus far) incurable disease.

Years ago, before she passed away, I had an elderly neighbor, Ms. Jewel.  She was so sweet.  She wanted me to let her know when I was in a bout and one time she was chastising me for not telling her I was laying up stairs for two days with vertigo.  I finally aid. “What could you have done, but watch me sleep” as that is all I can do when I am vertigo.  I take my medication and it knocks me out, so I sleep.

Not knowing what to do or say, I believe is what causes many people to “leave” when someone gets sick.  There are times that a person may have an illness and require others to be there to tend to various needs.  But so often, when the person who suddenly gets an illness can no longer do the things you used to do with them you can’t figure out how or where you fit into their lives any longer.  This is what has happened to me.  I used to hike, play volleyball and many other things before Meniere’s entered, all those people I did these things with are gone.  Perhaps I can no longer engage in these activities, but I miss the friendship and camaraderie I felt with these people.

If there is someone in your life that has Meniere’s or an illness that is “invisible” and they are unable to do many things, don’t be afraid.  You don’t have to always talk about the illness and while it may be a bit painful to talk about the things you used to do together, it can also help that person.  It can remind them that your friendship is greater than the activity they can no longer engage in.  Call them up, or better yet, go see them.  Just sit and spend time with them talking about anything.  If there is something you see that needs to be done and you know they are unable to do it, volunteer or just do it for them.

Other things to help both of you feel useful instead of helpless, take the person for a drive (if their health permits) and just enjoy some time outside.  Personally, I get tired of not being able to get out and enjoy the out of doors and would love to have someone care enough to take that kind of time to spend with me.  We want to feel like useful members of society.  Anything you can help this person do to accomplish that is a good thing.  This morning I was texting with a friend in another state and she is one of three that I bid “good morning” to every morning (unless Galar is visiting) and this helps me in a small way feel like a useful member of society.

Little things mean everything to those who can no longer do the big things in life.  Even if someone takes the time to bring me something that  I don’t necessarily like, I appreciate it more than words can say because I know they were actually thinking about me and wanted to see me even if it was for just a few moments.

I am sitting here in my ‘prison cell’ and reading Tweets and Facebook posts with all the holiday greetings.  Since I am a writer, my mind swirls around all of this.  Having Meniere’s, my head spins around all of this. 

This can be a very trying time for those with Meniere’s Disease whether you keep Chanukah, Christmas or Kwanza.  The menu has to change to limit the sodium (this means most people won’t be happy eating bland food to accommodate you) as the majority of holiday treats are laden with salt.  This can be stressful for someone like me as I feel guilty causing such an inconvenience (not that I get any invites to share holiday meals).  The added stress that society piles on making people feel that holidays cannot be experienced unless you give store-bought gifts to EVERYONE you know can also set us back (and I don’t me financially).  Then there is the stress of decorating and the stress of having to go places and see people you aren’t that fond of.

Stress and salt out of the way, lets look at the other triggers.  Allergies (not one of my triggers), with bringing live, cut plants into your home brings in mold and other airborne allergies.  Digging out the supplies stirs up and allows dust to fly about.  This is one trigger I am glad I don’t have.  Weather is another big one right now.  In some areas it is the rainy season, but mostly folks want snow.  I seem to be set off when any weather front comes near.

If you are a friend or family member of someone who battles this wretched dragon, I hope you will truly be filled with the holiday spirit and NOT push this person to participate in everything.  visit with them so they don’t feel forgotten or left out, but understand that while you don’t see anything obvious as wrong, they are still feeling it on the inside and it can be very ugly for them.  Be understanding and know it is the dragon we loath, not y’all.

Right now, many of you (yes, me too) just want to curl up in a corner and wait out the triggers.  You know yourself and how you are affected.  I send good thoughts to you and hope you will take it easy and not push yourself and pay big time later.  Through these holiday highs (and lows) I will be on the couch if you need me.

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 established a bucket list of sorts as my new year resolution this past January.  It will go undone as no one seemed to care enough to want to help me when I sent out a plea.  I have been screaming for help for a long time now and no one gets it.  I sit and listen to the ills that everyone else has but when I even attempt to say how I feel I am either turned away or told just to get over and go on.  I know others have their issues and they deserve to have their say and I respect that and let them talk whilst I listen.  I would never take that away from another human being.  I will continue to listen, but never again will I attempt to confide in you or trouble you with how I feel.

When my grandfather and step-grandmother died, so did the last of the love I ever truly received.   My beloved best friend Sissy had dubbed me Miss Independent not long after we became friends.  My greatest strength and my greatest weakness were always one and the same, my independence.  When I have in the past few years made known my needs, they weren’t filled.  I kept writing about it in my blogs and as posts on FaceBook, but no one ever tried to reach out and help ease the pain.  I will say this one last time, LONELINESS KILLS. I find it fascinating that none of the so-called Christians nor Messianic believers I know in this area could reach out to me and yet when I voice my feelings all they can do is preach at me and I am supposed to accept it.  I seem to recall a passage in the scriptures that talks about the Messiah separating the sheep and the goats and the goats question the Messiah when he says they never came to visit him when he was sick or in prison.  “When you have done it to the least of one of these…”

If anyone is actually reading this, you may have questioned the date.  Well I thought it would be fitting to exit this world the same day I entered it.  I am an organ donor and to my belief the only organ that will most assuredly not be able to be used will be my lungs (asthma is a harsh way to go, but the best for helping more people live).  I have my will and living will in tact with all my wishes specified and will have a hard copy of each signed and notarized prior to my departure as I will lay them on the in-take desk at the emergency room when I arrive.

Since I have been nothing more than an afterthought in life, I hope that I will be just as important to everyone in death.  If you feel guilt after I am gone, I hope it is excruciating.  I feel people only experience guilt IF they have something to be guilty for.  Shed no tears for me after I am gone as you did not want to even share laughter with me while I was here.

It has been a very long run, but it is time for the curtain to come down on this joke of a show.  I thank you for the abuse and all the ways you only used me.  I do hope you will not find anyone else to treat this way.  I only wanted peace in the world and for people to just accept each other and not try to shove their own ways and beliefs down other peoples throats.  Perhaps I was undeserving of love because I am substandard in every way, but please love every human being as if they are your closest kin.

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.

If you live in the Knoxville area you know how much rain  (filled in with bits of snow here and there) we have had since December.  I gave up using umbrellas after being introduced to Meniere’s Disease.  You take a physically off balanced person and give them an umbrella, let a gust of wind come along and the result is Mary Poppins flying up the highway.  Getting wet is a better option.  Last June when my original grommets fell out, not only did I spin again for the first time in eight months, but I also gained a new trigger ~ the weather.  I really felt for those with Meniere’s who called themselves walking barometers, but honestly I hadn’t a clue what they actually went through.  Guess someone felt I should have first hand knowledge.  With all the rain and snow we have had, I have gotten to know my couch very intimately.

The incoming storm already has my ears going crazy

Sometimes I think I feel weather fronts moving in 100 miles away.  I can feel my ears crawling and start with a deep ache and look outside to see bright sunny skies.  However, by the time the front moves in, I am in so much pain from both my ears that I have a pounding headache to go with it and I am laying on the couch with the heating pad on my ears.  If I had to choose between this and having full vertigo at least once a month, I would choose my current situation.

I haven’t been able to afford to see my doctor regularly as he desires since I have no medical insurance and no regular income.  However, a couple months ago I was sitting on the couch with my laptop doing my usually Shabbat routine when all of a sudden the room began to spin.  It was all I could do to set the computer aside and lay down on the couch and remain still for a couple hours till it passed.  I knew I had to scrape the money together to go see the doctor.  I went in on a snowy/sleety/rainy day with the hopes that it was just a blockage that could be fixed with drops or suction.  My hopes quickly turned to tears when he said that the grommet in my right ear was dislodged with debris around it indicating blockage.  He couldn’t be sure about the left side so I had to have a pressure test run to detect the status of my eardrums.

I sat and cried.   When I was taken for the test, I walked through the hall clinging to the wall and crying.  It was determined that the right eardrum was closed over but we could not be sure that wax and debris had not gotten behind it to cause infection.  The left ear and grommet were intact and did not appear to be blocked.  I still cried.  I cried in part because I knew how much it would hurt to have the grommet procedure repeated and then it would take several days for me to get back to doing well.  The other reason I cried was recalling that it cost near $400 to have the grommets inserted last June.  I don’t have that kind of money.  One good thing was that it was found after reopening my right eardrum the doctor found that there was no debris, wax or moisture that got behind the eardrum to cause infection.  I have been caught in an eddy of pain and tears for  five months.  Hopefully now I can begin to maneuver out of the area and toward shallow waters if not the embankment.

The rain loves to wreak havoc on my ears and my head

Since November 2004, I have been on a wild ride.  I was invaded by a deceitful and utterly spiteful dragon.  Last week I was on the phone with the attorney’s office as my advocate helped me fill out the forms for me to get SSDI.  A lot of the questions related to how my life has changed since the invasion.  As I tried to focus (hard to do since I hadn’t eaten and my ears were going nuts) and answer the questions the best I could, I knew my life has changed, but saying it to someone else to make it official for the records just made it even more real.  Chronic illnesses have a way of changing everything about your life and make things even more difficult.  From walking to brushing my teeth, everything has changed.  I used to be able to walk, chew gum, juggle and carry a conversation at the same time.  I can no longer chew gum and have to stop walking to really carry a conversation.  Juggling, well I struggle just juggling day-to-day living.

Early November 2004, I was beaned in the head by a fastball called Galar Meniere’s.  Now everyday I dodge wild balls while trying to get even a base hit off of the curve balls and change ups that are thrown at me by this dragon.  I still look at it as a roller coaster ride, but the day in and day out of this is kind of like a baseball game.  So far he is winning, but I will play the game through and perhaps one day there will be a home run for all of us when they announce that they can finally answer all the questions that have been around since Prosper Meniere first began researching this disease in the mid 1800′s after it had been plaguing people since at least the 13th century.

Galar

The dragon is back
my ears to claim
his attack is brutal
driving me insane

my ears, they crawl
they burn and ache
I want it to end
for goodness sake

I cannot understand
how a God, so kind
can cause this ill
I’m losing my mind

please, someone
take sword in hand
slay Galar soon
erase him from this land

we are many
Galar seeks out
salt, allergies, weather
can begin our bout

the scientists only
through tests and research
can slay Galar,
remove him from his perch.

PLEASE HELP SOON!!!!

April 8, 2010

© DL Bach

Rain, rain go away
I’m trying to keep my spins at bay
If only I could hope and pray
I’d wish you somewhere else today.

As My World Spins

The world it spins
faster, then faster still
I want to get off
that is my will.

Someone please help
make the spinning stop
I really don’t care
if it makes me drop.

My head is foggy
things are unclear
no wonder I’m alone
and no one comes near

The fog and spinning
they make me feel drunk
then I get tripped
by a smug little punk

The weather front comes
and so does the pain
if a cure is not found
I’ll sure go insane

I still think it right
I’ll not make a show
But if you do see
I’ll look like Van Gogh.

March 8, 2010

© DL Bach