I would not have survived this
condition if not for my wife. Nor would I want to. She makes whatever
I have now possible.
We have been together since we were
both teenagers. We are strongly bonded in so many ways, and could not
imagine life without the other.
And yet, with this condition, sometimes
she does lose me. I am simply not here anymore. My personality is
gone. It is as if that core essence of myself gets lost, and I feel
like an empty shell. I feel no emotion. I eventually come back to my
old self, but it is enormously difficult on both of us, and probably
worse for her, since the person she knows and loves just disappears.
She tells me that this is one of the most difficult parts to deal with. It
is frightening to see such a change in someone you love.
She loses physical contact from me when
I go through periods where I can not be physically touched. There are
so many difficult aspects to this, but how do you deal with the fact
that your partner does not want you to touch them? How do you not
feel rejection?
Our sex life has been devastated, and
there our periods of time where it is just not even possible. Finding
times when I am well enough to deal with sex, not overwhelmed with
pain, not emotionally detached, is difficult. It requires a lot of
effort to keep our sex life going. Our sex life could so easily
just disappear if we did not both so much want to make sure that does
not happen because it is such an important part of our lives.
Sometimes when I am in a lot of pain I
look to her beautiful face for comfort. Sometimes what I see, though,
is a face wracked with worry, and fear, and stress from seeing
someone she loves in so much pain. There are two victims of this
condition in our lives, each having to suffer through it in different
ways.
I can be brave, and fight it, and maybe
even feel noble about not giving into it. All she can do is watch,
and worry, and feel helpless because there really is little she can
do for me to lessen the pain or make it all better. I can't
understand what she goes through any more than she can fully
understand what I go through.
We may now have the worse rather than
the better, the sickness rather than the health, but the love and
cherish part of our vows are what sustain us every day through this
incredibly difficult condition.
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