Taking time out from the wine business is never easy.  And there isn’t a lot of time to take anyway.  Nothing ever goes as planned, or so the song goes, and I find that out pretty much on a daily basis.  It’s not that I am complaining, though I am overly prone to do so.  I just find it almost funny now.  In this divisive atmosphere of conservative-liberal, Republican-Democrat, pro-life-pro-choice, Team-Edward-Team-Jacob, Beatles-or-Stones dichotomy we live in, it seems to almost always be about taking sides, and never appreciating anything.  As difficult as it may be, I avoid planning too much for the reason that with almost absolute certainty, my plans end up careening down that fiery rabbit hole into Hell every time.

My wife has been ill for almost the entire duration of our 10-year marriage.  She is 36 years old.  When I met her, she was full of fire, headstrong, determined – the kind of strong will that can either be the blackest storm you could ever endure, or the greatest source of strength you could ever experience.  She was – and is – the latter.  From the first day I ever met her, she was the most incredible woman I had ever met.  I was this moping, sad sack dwelling in darkness, always seeing the world as half-empty.   Yet that all changed when I met Jen.  She prodded me out of my dead-end bar manager job and pointed me down the career path I am on right now, a path I have reveled in taking ever since I started walking it.

Yet now, I find myself juggling the responsibilities of my job, and the needs of a sick spouse, someone who on most days, can’t even make it out of bed or down the stairs without help.  Her appetite is almost gone, she has trouble sleeping through the night so she spends her waking hours nodding off in front of the TV.  She is not infirmed.  She just has more bad days than most of us.

What she has been diagnosed with is a heart condition called ARVD, or arrhythmigenic right ventricular dysplasia and a clotting disorder called lupus anticoagulant.  On top of that, she was diagnosed with Fibromyalgia a few years ago, a disease that essentially causes nerves to misfire, telling the body its in severe pain, when it really isn’t.  It is not a psychosomatic disorder – meaning it’s all in the head – no this is a neurological disorder that doctors know almost nothing about, and many people, friends and family included, feel she is faking it.

Now, it’s hard enough dealing with the misery that comes with chronic pain, yet it’s harder still when people think you’re making all of it up.  What point is there in making belief that you are in extreme physical pain?  I’ve never understood it.

What I have learned in this lifetime, albeit my brief stint in it, is that you have to take advantage of all the good moments that come your way, however brief, because nothing lasts forever.  Not too get too “new-Age-y” on everyone, but I was reading something the other day and it got me thinking about this.  I’ve dealt with this before.  Growing up, my father had been diagnosed a “brittle” diabetic – unable to regulate his sugar, which could be too high one day, and too low the next.  We spent the better part of my High School years in Emergency Rooms and ambulances with him.

When I was ten years old, I dreamt of a monster that lived beneath my sister’s bed, and one day it caught my sister, and tried to drag her underneath, into the darkness.  It was a shadowy beast that snarled and growled, and I could hear my sister screaming so loud, my skin vibrated.  My father dove in and grabbed her, throwing her away from it.  But the monster grabbed my father and I watched in horror as he shrank.  It shrank him.  That dream was so prophetic because over the next ten years, my father’s disease shrank him from the big powerful man I knew as a child, to being frail and weighing less than I did, when I was 20.

In a lot of ways, I see that beast returning for my wife.  Yet what helps is making her happy.  I try to keep the drudgery of the crappy days at work away from her as best as I can, and I try to make her as comfortable as she can be at home.  The little things are the simplest ways to fight the monsters that wreak havoc on us, whether it is Time, Doubt, Stress – you can only do so much, yet it’s the fight that makes life worth living.

These are the deep breaths I find myself taking when the stress at work gets too much to bare.  Those in-between moments that make whatever chaos we’re dealt each day a bit more bearable.  I realize I am not the only one contending with these types of things.  And I am more than aware that there are people who have it far worse than my wife or I.  We at least, have each other.  And regardless of whether our plans fall through or not, it’s having that one constant that makes getting out of bed each day a little easier.

Nothing ever goes as planned alright.  And that’s alright with me.


  • Lulu
    February 10, 2010 - 1:56 am | Permalink

    As someone who has an incurable disease and is about to get married to the man of my dreams, I can only say that people like you and my partner are amazing men and that I thank my lucky stars every day that I have found someone who loves me for all that i am and that all I’m not, and may never be.

  • February 10, 2010 - 9:02 am | Permalink

    Lulu, congratulations and all the best to you both. I concede that it’s been a hard road for my wife and I – ten years this Spring – but I wouldn’t change it for the world. She’s my everything. Always remember, live life on your terms, not the illness’s.

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