Thursday, September 19, 2013

Describing Your Illness To Your Partner

There are days when I look pretty good but am actually feeling really lousy.  My hair shines, my teeth are white, my skin is smooth; but that's just the surface.   The inside, consisting mostly of pain and darkness, is hidden by that misleading surface light.

The pain comes and goes at its own pace and seems not to be affected by anything I do except sleep.  It may start as a slow creep or as a wallop.  When it's at its most commanding state, everything else disappears.  Food, water, the outside world, even TV are irrelevant.  Pain demands attention, and I can only acquiesce.

What does it feel like?  Sometimes like broken glass sloshing around in my abdomen.  Sometimes like a giant fist trying to punch its way out of my pelvis.  And sometimes like a herd of wild stallions with sharp hooves stampeding in my bladder.  And sometimes like a fat caterpillar crawling around, thwarted in its search for the moment to transform into a butterfly and ride away on the wind.

How do I share this with my partner?  How do I bring him into my experience?  He wants to be as close to me as my pain is.  Sometimes my pain is so possessive it won't allow that.  It mutes me.  It drives me away from him.

Sometimes I can speak in his analytic language and tell him it's up to level 7, 8, now 9, now it's a 12 on the 1 - 10 scale.  We have discussed the meaning of the numbers enough so we can use them as shorthand to connect.  But in truth, the numbers just don't do it for me.  They put a box around something that is too energetic, too aggressive to be described by a number.

There are many days when the pain is at zero.  I feel normal.  I feel like my body is my friend again.  Richard doesn't usually have to ask how I'm doing on those days.  It shows.  Not in a cosmetic way.  But deep in my eyes and in the way my voice reaches out to him.  I feel like me, and therefore I recognize him; and he feels that.

The worst times are when I've been feeling normal for several days, even several weeks and months, and then start to feel the slow pulsing of an impending pain spike.  I feel so cheated.  Deceived.
Defeated.  As if feeling good were the dream I eventually have to wake up from to live in the real word of pain.  My disappointment is so profound that it warps my thinking and eradicates any hope.  At times like these I look to Richard to hold the hope and chant verses of possibility.  I can sometimes catch a few lines and hold onto them, like a tow rope leading me somewhere else.

How do I describe my illness to my partner?  I really can't.  It would be like trying to describe my love for him.  I can come up with images or a spectrum of numbers or words that convey weaker or stronger.  But the pain, like love, is too encompassing and lives in a realm so deep that neither light nor language can penetrate.

What you have here is as close as I can get.  And, in truth, even this isn't really necessary.  I think Richard just knows.

How do you describe your illness to your partner?  And for well partners, how would you describe your partner's illness experience?

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