Denial Redux

Maybe I live in a state of denial. For those of you who
don't know, my partner was diagnosed 2 years ago with early onset. She was 44
at the time. That seems awfully young in my mind. She still functions fairly
well based on what I'm seeing. She does tire more easily than she used to but
is still able to travel and plan that travel. She keeps a blog and sometimes I
read things that she hasn't really talked about. This last post startled me a
little. She talked about sleeping more, leaving the boys to fend for themselves
during the day and not able to hold a thought for a day after her last trip to
Nashville.

See, I don't see that. I see her at home where she's
planning meals, cooking, cleaning, bathing, getting the boys where they need to
be. Maybe I'm living in denial or maybe I choose to be blind to it, I don't
know. What I DO know is that there are days when I'm angry, ANGRY at whatever
higher power who is supposedly in charge. And then I wonder if (insert your
god/goddess) really gets involved in the day to day. If there is a god, I have
to question why that god would do this to a person and a family, especially one
that has young children in it. It isn't helping that our 15 year old is angry
about this and acting out towards her. That is taking it's tole on my mental
and emotional health. Work is in a state of turmoil right now so I don't need
that tension when I come home but don't know how to fix
that.

And then there's the rest of my family. That's an entire post all by itself and maybe I'll tackle that soon. Suffice it to say, she isn't accepted there and neither are my kids. I won't put myself or them in that situation again.

And I'm scared to death of the day when she can no
longer take care of herself and what that means for the rest of us. I'm already
seeing the woman that I fell in love with fading away. I see the changes
including the personality changes. I know that if I met her today, I wouldn't
give her a second thought. I fell in love with the fire and opinion and fight,
not with what she has become and that's hard. People say that she's the same
person you fell in love with and I have to say, no she's
not.

This isn't like cancer or an accident that changes
someone's looks. I could deal better with that. This robs people of their
personality, their senses of humor, their interests and desires. All of which
is what I fell in love with, not her looks.

I don't know what the future holds. We take it a day
at a time and I continue to believe that a cure or better treatment is just
around the corner. it's the cynical side of me that believes that because
there's way too much money to be made for the pharmaceuticals NOT to find that
cure/treatment.

And here's what really makes me angry. Our government
is talking about bailing out all of those people who chose to live beyond their
means, who made irresponsible choices in home loans and yet, our government
won't recognize my relationship so that I could better take care of my partner.
We've followed the rules. We have made sacrifices so that we could live within
our means and we are punished. I can't get health insurance on her. We can't
afford a separate policy because of the expense. There are decisions that will
have to be made but I can't make them unless I have a piece of paper giving me
permission. I WANT to take care of her properly and can't.

20 years, we've been a couple. Next month, 16 years we
will have been parents twice but I can't provide healthcare for her. I'm angry
with the system and with this disease and lack of understanding for
both.