Wednesday, February 24, 2010

My War With Meniere's-In Honor of Rare Disease Day

I am writing this in honor of Rare Disease Day which is February 28, 2010.  Approximately 1 in 10 people suffer from a rare disease.  Many of them children.  Meniere's Disease is only one of thousands of the rare diseases out there. 

Meniere's Wars-The Saga Continues

We're all familiar with the typical horror movie ending.  The good guy battles endlessly with the bad guy and finally kills him in some heroic manner.  The good guy smiles triumphantly and walks away.  Meanwhile, you're yelling at the screen, "you idiot, he's not dead yet!"  Sure enough the bad guy manages to revive himself and come back again.  The good guys are always so surprised.  Really, good guys?  Have you not watched enough bad horror movies by now to know how this is gonna turn out?  Silly good guys.

So this is where I am with my bad guy, Mr. Meniere's.  Or perhaps I should go with the comic book character Count Vertigo whose powers allowed him to cause his victims to suffer from vertigo.  (Look him up.  Wikipedia don't lie!)  I had Count Vertigo on the run for many years.  Laughing at his demise and how I had my own mysterious superpower that he couldn't penetrate.  In other words, I killed the bad guy and walked away like a fool thinking it was all over.  As it turns out, Count Vertigo has returned for revenge and I find myself once again embroiled in battle.  Except this time, it appears the Count is coming for my good ear and I'm gonna need every trick in the book to beat him. 

I've thrown my usual moves-medication, diet alternative therapies, shots in my ear, and surgery.  The evil Count has tossed them all aside as if they were nothing.  I'm frustrated.  Hope is fading.  This is the part in the movie where you would be saying, "how will she win this one?"  Perhaps even hiding behind your hands, only daring to peek once in a while.  Your heroine is weak and without a way to defend herself. 

I, your heroine, (and yes, I did just refer to myself as a heroine twice, that's right, I went there)  am regrouping.  I've called together my super squad with my version of the Bat Signal (maybe a giant hearing aid in the sky? I've gotta figure that one out.)  The brightest of the bright are on the case.  The leader of my super squad is the best in the land.  His abilities to defeat Count Vertigo are legendary.  He hasn't given up on me or on the complete devastation of Count Vertigo.  His cape is non-traditional, a white lab coat, that flies behind him as he strides into the room to meet with me.  (My super squad also includes my husband and my family, by the way.  They've saved me from many treacherous situations.  I also include Sam because he's only one of a handful to witness a full-blown vertigo attack.  The fact that he didn't puke too makes him "super." Oh and Dwayne too for having to help get me to the hospital after a nasty attack.  Ah, heck, it includes a lot of you out there who have stuck by my side!)

I'm eager to hear our next plan.  Surely, there's something new up his sleeve.  Instead, I'm thrown a curve ball.  We are going to wait and see what the evil Count has planned next.  Maybe, just maybe, he isn't going for the good ear.  Maybe he wants complete destruction of my already  affected ear.  We can't make our move until we know his.  A very wicked game of chess.  I am sent home, to wait and wonder what's coming next. 

At home, I am on high alert for any signs the Count is about to strike.  I am hyperaware of the screeching tinnitus in my bad ear.  I am growing frustrated that when someone is trying to speak to me on my bad side, I can't understand what they are saying.  Every noise seems amplified by twenty.  I get up to do what everyone else deems normal everyday activities and the dizziness sneaks up and reminds me who is running the show right now.  Rare moments of weird noises like air rushing in, or high-pitched squealing, take over my good ear and I think, okay this is it.  Then as suddenly as it comes on, it stops.  My children wonder if I'll ever be "normal" again.  Somewhere deep down, I know I have to fight this alone but realize I need support to do it.  As a heroine, I must be independent, strong, unbeatable.  Besides, who in their right mind would volunteer to help fight this evil monster?  Most people by now have given up on me.  That's the most evil part of this disease.  The Count can make me appear completely normal.  On some days, I can go out and do normal things without consequence.  Then everyone thinks, she's all better.  Then, wham-o, I'm back on my rear-end again.  This is the part of the movie where there would be this montage of me going through all these things.  The part where you would be pretending not to cry although that one tear manages to sneak its way down your cheek.  You deny it.  "I've got something in my eye, that's all." 

The movie ends with a promise of my fearless leader to meet again in a few weeks and reassess our plan.  Will it be more watching and waiting?  Will it mean more testing to try to see what Count Vertigo may have planned next?  Or will I somehow miraculously have defeated him on my own between now and then?  The movie ends without you knowing my fate.  You'll have to buy another ticket and come back for the next installment. 

Until then, be on the lookout for this guy...if you see him, give him a swift kick in the "you-know-whats", would ya?

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