Saturday, February 12, 2011

don't get it

People don't get what it's like to be almost 38, in the prime of life, but preoccupied with death all the time. It's not like I choose to think about it, it chooses me. It's what's on the mind of a 78 year old, not a 38 year old.
My world is getting smaller, not bigger. At a time in my life when I'm working a decent job, I should be looking at moving forward, not scaling back. I am starting to find ways to sell my position as part time. Others my age would be looking towards getting a management position, or at least, promotions. I have the means to be able to travel (thriftily or course because I still only work in social services) and my physical world is getting smaller, shrinking with elevation, distance, air quality. Israel has been "canned" my my Dr. Cardio man, and now my back-up trip to the desert has been too. Who knew that it was 6,000 feet above sea level (at it's lowest points) and 12,000 feet above sea level at it's highest points. So great, I have a week off from work with no where to go: I could always drive to NYC, again. It's getting boring, tiring and frustrating that my world is shrinking.
And around me it shrinks too. I can't be out as long, I don't have as much stamina to do social things, especially if it's on a weeknight. That's almost out of the question. On weekends I have choose which activity gets done: laundry or brunch with friends, because g-d knows I no longer have enough energy for both.
People my age are making plans, having a future.
I am looking back on my life, realizing I gave the best years of my life to a woman that didn't even appreciate it. Someone so special is sitting in front of me, wanting to have a future with me that I probably can't give her (I've been reading more about expectancy and the reality of just how old "old" is for someone with TA). I've finally found someone that speaks my language: not just literally (francaise) but financially, spiritually, all the areas you could think of; and she gets the short end of the stick. I just hope the Ex knows how lucky she was to get my best years. Chances are she does not. And it no longer matters, it only saddens me that someone that I gave that gift of life to couldn't appreciate the true miracle and gem that I am.
And in case that sounds egotistical, I remind you that I am about to be 38, was never supposed to live into adult hood, am unrepaired, and, there are less than a few dozen of us over 35 still alive. Now I dare you to accuse me of being egotistical. I know how hard it's been to live in this body, not being able to breath some days, do regular people things (stairs, work, walk to bus stops, walk and talk with an O2-sat rate of 78% room) with an irregular heart. I dare you to give up 1/4 of your oxygen intake and still be expected to speak fluently and without mistakes in English, be expected to remember things, function like a normal person. If you can do it with 25% less air and nourishment to your brain, then please please tell me your secret. I dare anyone to embrace heart failure and give up your life at it's prime - yes, most people will do this, when they are old enough to be preoccupied with death all the time; not when they're in the prime.
When Thomas was taken/left this plane I wrote about how un-natrual it was: that parents are supposed to go before children etc. I'm back at that thinking lately. In my prime, not preparing for death. It's a confusing time because on the one hand I am (tyring to act) normal and keep up with full time work, certifications, life goals etc. I play the living game: looking forward to the future, shopping (as if I'll need things in the future), making plans etc. But all the while I might as well be 78: wrapping things up, looking to down-size, not start new things, not plan ahead, but looking to purge.
It's no wonder I don't know if I'm coming or going lately. No wonder at all. My stages of grieving are never-ending but always, always a part of my life. Just when I get comfortable with one stage or plateau another limitation/reality is made apparent. I just can't keep up.