In the delicate whisper of essence, enveloped by calming silence, it is easy to see; to hear; to feel.

Rising early, my mind swirls with anticipation.  Excitedly, I wash and slip into my favorite long-sleeved tee and khaki hiking shorts.  My fingers are barely contained as they comb my curly, red locks into a ponytail and place my Mickey Mouse baseball cap securely on my head.  Lacing up my hiking boots sends near orgasmic sensations dancing through my body.  Grabbing my pack, which was filled last night, I jump in the car and make my way to Frozen Head State Park in the Cumberland Mountains of East Tennessee.

The parking lot at the foot of the trail to Chimney Top is half full already and it is only eight in the morning.  It seems most folks come to Frozen Head to hike that trail.  Some accounts suggest it is the toughest trail in the park and lays further claim that it is steep, up-hill both coming and going.  I considered taking that trail on my first trip to Frozen Head.  However, I quickly changed my mind when I was nearly run over by a group of children running on the trail.  The scene at the top may boast beauty, but the well-used trail just wasn’t for me.

I find a parking space and step into the sunshine.  Already, every one of my senses are engaging, almost the way a dog perks up upon hearing a noise that could be threatening.  Even though I have not planned a strenuous trail, I stretch a bit as I obtain my pack from the backseat, slip it onto my shoulders and make my way to the main trail’s head at Shelter C.

 While I am not going to Chimney Top, I must begin my journey at the same spot as everyone else this morning.  After the others turn off the main trail to make their pilgrimage up to the Fire Watch Tower, I continue on and allow myself to sink deeper into the purpose of my hike today.  There are other trails with more beauty and still others far more challenging, but today I need more.  As this may be the last time I will ever experience my favorite hiking spot I need to go to what I believe to be the very heart and soul of Frozen Head.

Feeling every rock through my boots and thick socks is exhilarating instead of uncomfortable.  I purposely keep my eyes on the trail in front of me and not casually look around, as I do not desire to climax too soon.  Small rocks patiently embedded in various places in the dirt trail compliment the tree roots and dusting of fallen leaves.  My memory sees clearly the wild flowers dispersed amongst the trees which ascend upward gradually filling in the canopy overhead which welcomes and beckons me deeper into a wonderland without equal.

Tempted to move quickly to my spot, I pause briefly to calm my heartbeat and take a deep breath.  The crisp, early October breeze meets my moist skin and the sensation melds with the clean, fresh aromas filling the air around me.  I want to move methodically, yet gently in order to savor every delicious moment; every gratifying stride as my body synchronizes with this magical place.

 As I ascend and descend the ever-narrowing path, my mind wanders to the previous months, which have left me feeling barren and stripped of everything I thought I had a firm grasp of.  Here is where I will be able to make sense of things.  In this haven I will see the words that have been eluding me.

Eleven months ago I fought my first battle of a war that my doctor advised me last month I would be fighting the rest of my life.  The shock of knowing I will no longer be able to do most of the things I love has left me with writer’s block.  As a writer and a poet, this is not a good thing.  Hiking in the mountains always seems to stimulate the tornadoes in my mind and adds fuel for inspiration.  This trip will fix things and set them to right.

My pulse begins to dance in my veins as I glimpse the mountain stream through the trees.  Knowing the terrain is a bit tricky getting to the stream from here, I continue to move cautiously.  Each yard brings me closer; closer to excitation; closer to uncompromised release.  I stop and gaze in amazement as the trees drawl open their curtains; almost as if it is the first time I am seeing this spot.  I continue on and make my way down the nature-made steps to the stream.

The stream has waned as most streams and lakes do in East Tennessee this time of year.  I traverse to the center where there is a large, rather flat rock where I sit and enjoy this sanctuary as I have many times before.  Beams of sunlight make their way through my thinning baldachin, falling upon my face providing comfort and warmth.  I gently remove my pack from my quivering shoulders, but lay it aside and pull my knees to my chest and just sit.

My breathing synchronizes with the wafts of air encircling me.  I feel as my pulse harmonizes with the heartbeat of the stream and the insects around me.  Becoming one within the crux of existence elevates the soul to levels not understood by anyone who has never reached this zenith. Calming silence here, inside the delicate whisper of essence, envelops and its true clarity allows one to see, to hear, and to feel in shades and colors that mystify the rainbow.

After what seems a moment and yet a lifetime, I rouse from blissful relaxation.  My pack is still lying next to me, unopened.  Today, I did not need it.  Today is not the day to attempt to put pen to parchment and record what is in my heart.  With bittersweet resolve, I return to full comprehension of my place and time.  Replacing my pack once again to my shoulders, I notice my boots have partially dried.  I progress slowly, rising from my own personal Gibraltar and make my way to complete the Interpretive Trail Loop.

The trail is somber and shares my melancholy.  The intermittent falling leaves mimic the tears upon my cheeks, except in vivid autumn colors, which will peak in a couple of weeks without me.    I don’t know why leaving always takes longer than arriving, but my departure is twice as long today.  Hiking boots, now made of cement, drag along almost bidding me to stay and allow my roots to take hold.

Emerging from my refuge a tsunami of fear washes over me.  Arriving at my car, I stop.  I kept telling myself with each step back to the world I must endure that I could not look back.  If I look back, it will be even more difficult to leave.  Still, I stop short of the front of my car.  Slowly, I turn.  I look back.  I cannot help but look back and capture a mental snapshot of what was and can never be again.

People leave places for many reasons.   Some leave places they despise where they could never find happiness, let alone true peace.  Others are ripped from the arms of tantric connection by incidents they neither understand nor have any control over.  The emptiness and absolute sequestration can never be explained; it can never be replaced.  Life will continue.  People will live, love and laugh.  For me to know the depth of these will only be through the tear-streaked memories more painful than death.

August 25, 2011

© DL Bach

Now, to discuss the not-so-good and the bad days I have.

Since adding the new trigger of weather in 2009, I have many not-so-good days.  It is just a factor living in East Tennessee.   I know, it could be worse, I could live in the UK.  Having many friends over there, I know they have lots of rain. 

If I wake up with what I call “waterbed effect”, it is a not-so-good day.  What this means is I wake up feeling like I am on a waterbed.  Not that the bed is wet (that is a post for another blog), but the slight motion of being on a waterbed when I don’t have one.  With this effect, I stagger out of bed much more off balanced than I usually am.  I will only drive feeling this way when I absolutely have to and if I do have to go anywhere, I have to be able to remain in the car or seated as much as possible.  During this time, I am much more susceptible to having drop attacks and this is not a desirable possibility. 

In the last couple years since I have really been more diligent in tracking these symptoms via an app on my iPod called My Pain Diary: Chronic Pain Management, I have found that I have these not-so-good days more in the days leading up to a full bout.

With the rain, I also have physical pain in my ears.  The pain isn’t intense, but more of a dull, burning ache.  What makes it really bad is that it is in both ears simultaneously and continuously.  This, after a few hours, causes a headache to set in.  When it gets to where I am ready to scream and cut my ears off, I take some Tylenol and grab the heating pad.  I bought me a microwavable heating pad that is aromatherapy as well and meant to fit around the neck.  This allows me to lay down with it and apply to both ears at the same time.

From not-so-good we travel deeper to the bad days.  If I wake up with what I call “lake effect”, I know I will be vertigo by the end of the day.  Lake effect is when I wake up feeling like I am on a rubber floatation device out in the middle of the lake.  Some people, when I say I will be vertigo by the end of the day usually snap back that I need to be more positive.  This is NOT me being negative.  It is me having lived with this dragon since November 2004.

Unless I have an obligation that I have to tend to, I usually get my cane, take my medication and go back to bed.   I do not drive or go out of the apartment at all when I am like this, unless someone is escorting me to the doctor (rare).  When I am in a bout, I am vertigo for two days.  During this time, I sleep.  My doctor has me on a psychotropic drug to help with the vertigo and I take it with a shot-glass of Pedialyte. 

The Pedialyte helps with the nausea.  I have learned to suppress the vomiting as I am the only one who would clean it up and I am in no condition to clean up vomit when I am vertigo.  Another trick I have picked up during this time is to get through my apartment without opening my eyes.  Most will tell you to open your eyes when you are vertigo.  For me, if I open my eyes, I will vomit.  I keep them closed and move about at an extremely slow pace.  During this time all I consume is the medication and Pedialyte.  I go from my bed, to the kitchen to the bathroom and back to bed all without opening my eyes.  This is my life for two days.

If you have ever had vertigo, imagine having it for two days while taking a psychotropic drug to help you with it.  (Side note – I don’t know how this drug is supposed to help the vertigo, all I do know is it knocks me out so I can endure the two days) 

Following these two grueling days I am very vulnerable for several more days.  First, it takes at least 12 hours of laying on the couch to get rid of the heavy fog which is a side effect of the drug and a residual effect of the vertigo.  Also, I am even more susceptible physically to drop attacks as I am physically worn out.  With the emotional toll it takes on me I am extremely vulnerable as well in that area.  This doesn’t mean you need to “walk on eggshells” around me, it just means you need to know that I am on an emotional roller coaster for several days.

  April of last year, I had three bouts back-to-back in one week.  This left me completely beaten up.  As a result of this, I contemplated ending the reign of Galar by destroying his prey, me.  I spent a week in the psych-ward at the hospital as a result of this.  It took this for my psychologist to finally believe me when I told him I was not depressed.  I was never diagnosed with depression.  I was diagnosed with Meniere’s w/psychosis.  There are depressed thoughts and idealizations, but not depression.

As an isolationist, I try to keep my contact with people to a minimum during the time immediately following a bout.  I know I am prone to taking things the wrong way and don’t want to make any comments that could cause ill feelings for the other person.  It is during this time that little things really mean the most to me (they always mean a lot, though).   An e-mail, an IM or a text that might simply say “hello” or “I’m thinking about you” go a long way in helping me get through this ugly period after a bout. 

To conclude, if I disappear for a while or seem even quieter than usual, it is nothing to do with you (well, probably not you), but instead, it is me trying to get back to a normal parameter following another bout with this hideous dragon.  Kind of like how you need to take time to get your family and household back in order following a tiresome visit by kinfolk you are kind of glad you don’t see very often. 

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.

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.

Yes, I put a warning at the beginning of this post.  There are so many people who believe that every person with Meniere’s is the same.  What you are about to read is what it is like for me on a good day.  This could perhaps be a really bad day for someone else you know or a day that others could dream of having as a good day.  Those who have known me since before I got sick expect me to be the same independent, vibrant go-getter that I used to be.  Well, I hope after reading this you will understand why I can’t leave my apartment when it snows or there is ice.

Since last spring I have been fighting to get disability.  It seemed no one wanted to listen to me or take the time to really help me through this struggle.  Even my attorney’s didn’t want to be bothered with finding out what was really going on.  Finally, in the last leg of this race I was able to speak to a supervisor in the attorney’s office and made him listen to what I had to say.  The following is basically what I said to him and have been using ever since.

If you want to know first hand what it is like to experience one of my good days, and keep in mind this is a GOOD day, take your iPod and load it with  the sound of a kazzillion crickets   ATA_Tinnitus_Buzzing_Tone.  Place the ear buds snugly into your ears.  This will diminish your hearing, so make sure they are nice and snug.  Then turn up the volume and leave it on 24/7.  Then drink a six-pack of beer.  Or if you prefer a few shots of tequila or a couple glasses of wine.  Drink as much and whatever it takes for you to become inebriated.  Not fall-down drunk, but where you are off balance and staggering.  Now go about your day.

Yes, I walk around feeling intoxicated and staggering.  No, I do not have the pleasure of imbibing to get that way.  Any questions?

In February 2007, I was at home watching the Law & Order: SVU episode where they were looking for a person who was involved in a virtual reality world called “Another Universe”.  This gave me an idea.  I found that Another Universe is fictitious, however there is another virtual reality world that was alive and well called Second Life (later in 2007 Second Life (SL) would be depicted on CSI).  I had my laptop at work and created an avatar and entered the world.  Due to not having internet at home at the time and issues with my laptop I did not make it off Orientation Island.  I put SL aside and went on with my life.  In the midst of Meniere’s I dealt with the death of my father and a treatment that took away my immune system and left me fighting colds and infections.

October 2007 I watched the CSI episode involving SL and was reminded of my failed attempt at entering that world.  I couldn’t recall my avatar’s name and password.  So I created a new avatar and called her Parker Janick (Parky).  I made it into SL this time and began exploring.  I would spend my free time at work in SL (I worked nights at a television station and was all alone there)  During my exploration I was clicking things and not knowing what I was doing things would happen.  One time I clicked something and received a blue box and clicked yes.  I then went to change a tape and when I returned, my avatar was dancing.  I sat there and cried for about five minutes.  I could no longer dance in Real Life (RL), but I could dance in SL.

I continued to explore and ultimately got internet at home where I could explore more.  I made friends, learned how to swim and do many other things in SL.  I finally found my life again.  Along my journey I began meeting other people with chronic illness and issues.  There are those who are bed ridden and others who are in wheelchairs.  I have even met three others in SL who have Meniere’s Disease.  It helped at one point when I begin attending a support group in SL for people with chronic illnesses and/or their caretakers.  One thing was certain, we all came into SL for the same reason, to do things that we could no longer do in RL.

I can’t do much in RL that I used to do, but in SL I am thriving.  I own a Celtic Pub where everyone is welcome (as long as they obey the rules) and I host twice a week at a friends jazz and blues club.  I am involved with writing groups and even attend a Writer’s Circle once a week where I read some of my own work.  I recently submitted a poem for a contest in SL and won first place.  I even wrote a short story called The Damsel And The Dragon about why I am in SL and it was published in a SL magazine.

I highly recommend SL to those with Meniere’s Disease or any chronic illness that keeps you from doing the things you love to do.  You can do those things again by using an avatar in SL.  Use this link http://secondlife.com/.  to find your life again, even if it is virtual.  I would still much rather be dancing, hiking and swimming in RL, but for now I will do these things in SL and keep my mind active while meeting new people from around the world and making friends (gaining contacts) in the process.  Don’t let your illness deprive you of your life.

A shot I staged to go with my short story The Damsel And The Dragon

Me dancing with some friends at my pub

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