Friday, November 25, 2011

Sons

When every day you wake and are just thankful for nothing more than that, when you find thanks in your husband remembering your name, when you are thankful for just one more day with no bills calling, when you are thankful for what you have had, not what has been lost...

My thanks does not need to come at the memory of a group of indigenous deaths.


Turkey day did not go to plan. We were supposed to head up North to a friends' home but I cocked things up. My doctor did not give me good news this week and I might have to have a small surgery soon if things do not begin to get better with myself. So, this boiled over Wednesday night and I got very very very ill. Could not drive, barely able to come out of the bathroom. I'm still not better today and we're both hoping to see relatives today.

I'm trying to not be scared, or mad, or upset, but it's not easy. I do not want another emergency type of surgery like my gallbladder which melted inside me. I'm trying to stay ahead of my body, but it really likes to fuck with me.
Mostly I'm just scared.

I'm scared because we have so many bills right now. Wash has had extra doctor visits with his Neurologist ($760 per visit) and after a week with insurance fuckery he's finally going in to see the Epilepsy specialist and they won't even tell me how much out of pocket that will be. And then there's my own medical bills for my issues, co-pays, medicine. And I worry, if I do have to have surgery again who will look after Wash? Or even me?

I've just been depressed. It seems like every time we manage to find something with Hope, some little thing to keep us both going, both wanting to live, Life or Cancer finds a way to rip it from us.

Having terminal cancer in your mid twenties changes everything. It's been two years. Two years of living, and not. Two years of heart beats, tears, medication, poison, laughs, hugs. And two years of a "not life". Two years with no paying work, with no schooling, with no real hope for any real tangible future.
What kind of a life is it that I seem to be fucking up so badly?

I miss having feelings. More than just "what else?". More than just a resigned acceptance that my heart beats regardless of my desires.
Two years standing still watching the world, my friends, my future pass by.

It's all just going through the motions. Playing a part.
It feels like a long night swim where the land moves away, the light fades until there are just stars. Just the water and stars. And while the stars dazzle, the water just pulls, and pulls, and pulls, before long the stars are not twinkling so bright, and the water begins to take away the air, just wet, and enveloping, and cold- never noticed before how cold it gets, and then the stars blink out. There is just a feeling of coldness and the urge to fight, where it should be- all used up. The water welcomes and hugs and draws down, and the stars blink out to black.

The honest truth is, some days I see myself sadly and lifelessly going on after Wash dies. And other times I hope with every last part of my being I'll go an hour after he does.

I've had two years of playing "Groundhog Day" with my husband. For that I am beyond a way to describe my thanks. That's two years more than any of us thought when he was in the hospital with a tumor the side of a newborn's head crushing his brain. Two more years of hugs, and kisses, and "I love you", and every little wonderful moment we were allowed to have, than others with his cancer. I know that, and I am thankful. It could be worse, sometimes I am not sure how, but I know it can be.
I just wonder, does it ever get better? Does the pain ever really let up, or is it just the mental scar tissue caused by years of time and distance?

I feel like a fool for trying. I feel like a fool for believing that things could change. I need Hope to keep going, to keep myself living, and I feel like a gorram fool every time for having Hope.

2 comments:

  1. Tashi, I can only imagine what you have been going through these past two years and I'm sure that, no matter how good my imagination and how vivid your descriptions, it still doesn't come close to what you are actually experiencing.

    Just know that I send you good thoughts and loving energy each time I read one of your posts or tweets - and I'm sure that there are many, many others who are doing the same.

    As a Canadian with universal health care, I have a hard time accepting that on top of dealing with Wash's cancer and your health problems that you have to deal with financial stress. It just boggles my mind and if I were in a position to help you, I would.

    Please take care of yourself as well as Wash and I hope that your medical problem does not escalate into a need for surgery.

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  2. I hope and pray that you're feeling better; and that you don't have to have a small surgery yourself, Tashi. I wish that I had the money-money-money to completely erase your financial worries; but (even more), I wish that I could give you the *one* thing that money can't buy; and that's a true cure for Wash followed by good health for you both.

    My heart (literally) never stops aching for you & Wash, Tashi............

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