Sunday, January 3, 2010

New Year

So yes, it's a new year, a new decade. i never thought I would see 2010, when I was five anyway.
So here it is. A whole new year ahead of me, looking so different than I ever wanted it to be. Sometimes the Universe has other plans, sometimes you fuck things up, sometimes it just is.
In reflecting on the year that's just past, the year to come I've come to realize that mourning is a way of life for me. This past year began with mourning the loss of my future, but in that I had chosen to spend whatever time I have left with the one I love. That was last years' "resolution". This year I don't have that choice. Last year was also spend mourning the unexpected and traumatic loss of a young life. That reminded me just how important it is to have my final wishes be known, how important it is to bring comfort and to support those you love and let yourself be supported. I started this blog a year ago so that the one who supported me at the time (wife) wouldn't be so alone in all that was required of her. She is now gone but my illness hasn't changed. My living with dis/ability hasn't changed. I'm facing this new year wondering what will happen on the days I can't get myself up the stairs because I'm in too much pain. I'm facing wondering who will be the one to carry me up since she is no longer here. I feel very dumb and naive for ever believing in "till death do us part". I know that I am a strong independent woman who's lived this long battling a very rare illness that has thrown countless symptoms, complications etc. in my path. I know I've figured out a way to live, despite it's very long, prolonged dieing process. Most of that "figuring out stuff" has been about life choices, work choices, boundaries on what activities and how much time spent on them in order to "save my energy" (as my mom used to always say when I was younger). The past year has shown me a little bit of what's to come. I've had days and nights where I've been in too much pain to get out of bed, or to get out of the car. I've always had my life partner there. I really don't know what I will do anymore with the physical stuff now. I'm mourning much more than the loss of my best friend, my lover, my spouse, a decade of my life (spent with her). I'm mourning whatever "in/dependent" future I had left with her, I'm mourning the loss of that "caretaker" role that she took on because she loved me at the time. I realize that when it gets really bad towards the end I will probably be in a hospice, with nurses around me to do all of those things. The thing about being married is that sometimes you can avoid the strangers of the hospice world and die in your own home. I can't do that anymore. Some of my wishes I want can't happen anymore because I'm being robbed of my commitment, my security of knowing she would be there 'till the end.
Last year, as hard as it was to write my directives, sign papers, I felt empowered that I was doing the right thing: not only for me (that I'd get what I want, for the most part) but for the one I loved: I was relieving her of many of the hard decisions she would have had to make.
Now she doesn't have to make any, including whether or not to show up to the funeral.
The sucky thing about being sick and single is that when you really need the help, it's not there. Or, it is, but by some strange nurse/caretaker you have no emotional investment in. Who wants to be carried by a nobody?

I haven't been feeling well the past few day - internall, nothing contagious. With even regular "sickness" I've found it very difficult to do the day to day things. I've had no food in the fridge for weeks now and the night I felt really horrible I couldn't go do groceries. I lay in bed realizing that if its' this difficult with normal illness, what's going to happen with the hardcore heart stuff acting up? I'm scared, frightened and sad.
Sad doesn't even begin to express it actually.
I'm alone.
I thought I was alone last year.... alone preparing for the end while everyone else was preparing for the rest of their life, but I still had someone by my side. This year... I really am alone in this. My relationship with my Creator really won't help me get up those stairs!