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

Through the years my steadfastness on this topic has not wavered. Pet peeves have crept in which I file under “stupid people doing stupid stuff.” Now, however, I hesitate in giving a reply. To most my answer remains the same. To me it is far from the truth.  While forms of abuse still ruffle my feathers, and probably always will, there is now something else that feeds the raging monster of anger with in.

Vulnerability. Helplessness. Weakness. No matter what word is used, it still comes from within. When your body brings about a disease it has a way of throwing your life and manner of thinking into a tailspin not easily recovered.

My body started behaving in a way that it should not. No one could tell me why. When I received a call from a “substitute” nurse wrongly telling I had diabetes, I thought my world was ending. After losing my grandmother and a close friend to the disease this news hit me like a sledge hammer on a carpet tack.

In a manner, I wish diabetes had been the answer. However, several weeks later I listened intently with some relief as my doctor explained that in fact, I did not have diabetes. I am pre diabetic. This news only gave a short term air of solace. We were back at square one. If not diabetes, then what.

Seven months! It took seven months for the parade of doctors to diagnose me with Meniere’s Disease. This disease had been mentioned to me by one doctor two months before the diagnosis. At that time my research began. My findings were anything but reassuring.

Meniere’s disease has no known cause, no known cure. These words plunged deeper into my heart and soul then lead weights into the deepest sea. As a perfectionist, I like being in control of my actions and my body. This time is no different. No one can tell me why I have Meniere’s. No one can tell me how to eliminate it. Needless to say, I am not a happy person.

What makes me angry?  Having a disease that no one can explain makes me very angry. I cannot explain why. I just know I am angry though no one is to blame. Even though a few aspects of the disease were gradual, most were not. I feel as if my normalcy had been snuffed out like a candle.

What is my response to everything?  Isolation and self medication. It is easier to withdrawal and shut myself off from the world. I trust no one and cannot trust myself to be around others. Pondering these issues and others, I often cry myself to sleep. To prevent this, I take Benadryl or drink valerian tea to put myself to sleep. Weekends in isolation are worse. I have been known to spend them with alcohol to numb my body, mind and soul to prevent thoughts of Meniere’s from seeping in.

So, what is at the heart of the matter? I cannot trust and will not try till the anger goes away. The anger will not go away till there is a cure for Meniere’s Disease and that is improbable in my lifetime. Hence, a very vicious cycle.

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.

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