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Why does it hurt so much?

December 6, 2010

Well, today is one and one half years since my husband’s floxing began and I have to tell you it has been hell.

I don’t know how he stands it because when I see him in pain, I don’t know how I stand it.  The last couple of days, what with the real onset of the cold weather here in Kansas, his pain has been significantly worse.  Some of you may have seen the video of one of the fathers of this cause — sorry — I’ll remember his name and include a link later — in this video, he and his mother are in the same room and he is absolutely beside himself in pain.  You can see that his mother is beside herself too, but trying valiantly to hold it together while her beloved son loses it.  The video is long and quite painful to watch.  I have watched it once — way back in August or September of last year and thought at the time, “Please don’t let it get that bad.”

From time to time I think for Joe it gets almost that bad.  He stoically holds on, but sometimes he does indeed cry.  I am not as good at holding on to my emotions when he loses it and I have, unfortunately, at times lost it right along with him.  Of course this doesn’t help.

Years ago, when I was still trying to nail down a subject for my dissertation, having just directed a production of Joined at the Head, a play about a woman dying of cancer, I considered a topic studying plays that address disease, both the chronic type and the terminal type.  What I was interested in — having only then recently gone through my mother’s death from a chronic and terminal disease, Hepatitis C, which she had contracted from a blood transfusion in the mid 1960s — was how the ill person changes the space around them and the ways that all their family, friends and even strangers have to change their lives to accommodate the unwell person. Ultimately, I was talked out of writing that dissertation by my advisors — too depressing — not interesting — not life affirming — basically they didn’t want to read it.

Today, I am still interested in this subject — I have lived through those changes so many times – with my father, my mother, a grandparent and an aunt who lived with us for a time, and now my beloved.

This thing – this floxing – this torture – foisted upon us causes us to change our world – rearrange our world – not just the furniture so it is easier to walk through a room or the bedside table, now covered in medications to treat the symptoms and the pain – but everything about who we are, what we do, how we think, even where we live (we’ve even considered moving out of the cross roads of every front that moves through the USofA – but not for Joe’s family – well, who knows).

And all because – as my dear spouse pointed out in abject frustration – because someone paid too much attention to the pharmaceutical rep and not enough attention to him.

We did what we were supposed to do.  We told the doctors, nurses, pharmacy techs, phlebotomists, everyone we came in contact with at the hospital, doctor’s office and the pharmacies “something is wrong” – and no one – no one paid attention.

I wish I could end this post on an up beat – but today – I’m having a hell of a time just staying level – up is a long way from here.

© 2010

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