Valentines Day

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.