Friday, May 20, 2011

No lack of colour

Yet another bad night for us and the record pile. Did not even try to go down until almost 2am and Wash was still up/not feeling right at 5:30am. Poor guy. He finally got some rest as did I, but we really don't/can't have a "normal" schedule.
It is just too hard to try and make his body adjust to a clock; it pretty much controls us.

So, had a bit of family issues this week. Don't feel like addressing right now.

The kitties are staying close and lovey this week, I think they can tell when emotions come out. We have had so many friends/other people we know with brain tumors not have a good past few weeks. I can't help but feel lucky and so sad at the same time.
Yes, my husband is still around a year and a half after his brain surgery and year of chemo/radiation. This really means nothing I am learning. He might be around for another year, maybe three with me. He might be gone in 6 weeks.
It is so hard to try and live for every day, each moment and still try and prepare for some kind of "normal"? life as well.

What about school? A career for me? Family?
I feel so lost often as there is just no direction. Every thing that society tells us is important or holds value as a human is fairly lost to us- we are continually told that it is a "waste" to keep us both alive.
Sometimes I really wonder if they are right. If numbers are really all we all are; some kind of intrinsic value that others can see and quantify- how much money you can make or be worth, how many children/next generations you can produce, how well one does their job or cares for another... and at this point I don't even have a garden to grow and give food from.

For those of you lucky enough to not have to rely on the kindness of others and the system you have paid into to protect you... you might not be aware of how demeaning the whole process is. How every few months I not only have to relive the nightmare of what I went through when he got sick, I have to tell people explicitly how sick my husband is, how much of a guarantee it is that he will die soon, and of a very horrid type of death at that. I have to confirm my luck that he is still alive and with me, and at the same time remind those who have the power to help him live or die that he is dying and will die FASTER without his medical help.
I have to expose my whole life, all of our decisions. I have to explain and validate my choices in the care of my husband in the last however long of his life.
I have to clearly say over and over that in fact, I cannot make ends meet, that I need help, that we are not getting any other nice services.
I get to explain that $8/day for both of us in food stamps is barely enough- keeping Wash's weight up is so vital for his survival as well as the fact that even condemned men get to choose meals- I am sick of having to defend my choice to keep my dying husband happy with the foods that he can eat, and enjoy eating.

I am just so sad and angry and tired. So much paperwork to file, so many threats by my State to just let us die.

It hurts to feel so alone, just not understood.

We are not like the other friends and married couples we know. We do not have those lives, those options open to us. We are not like those who are 4 decades older than us who also get this disease and have to slowly die, watching their lives disappear as the cancer eats the brain.

I'm going to be 25 this year. Hopefully Wash will see 27.
I feel 50 years older than I am.

I feel like I have been cheated out of a life. Out of Hope.

This is part of what a "bad day" is to us.

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