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This day marks the year number four
We should have had warning, so much more
I've said it before & I'll say it again
You were a great father, grandfather, my friend...
Please try to help me understand
Mainly the reason for this awful plan
Our hearts stopped on that day, Sept. the 12th
You took away from us all our greatest wealth...
Love you always,
Barb
R.I.P. George
April 22, 1958-Sept 12, 2006
Welcome to my world, where I carry around dreams, a few diseases, & the determination to live life my way. Up until a few days ago, my attitude checked out ok, & I thought, Yay!, I am winning, but then someone or something comes along & knocks me back down again & I feel like I've accomplished nothing & that my life has not been what I thought. I feel like I'm a novelty that people want when it suits them, but they don't want me when I don't live up to their ideals of who I should be, & the novelty wears off.
Then they go off to continue with their lifes without a second thought of what they did to me by coming into my life for such a short period, & how it has & will affect my well-being. The sudden ups & downs are harder on me than any of the medications they have me on so that I might live a longer & more fullfilled life, which is a bunch of crap, because no one sticks around a person who is sick all the time.
And that's just the beginning...strange as it sounds, I do love my life. An imaginative writer could not invent it. My journey wandered off the beaten path long ago. The things I've been through are things that the lifetime channel movies are made up of. My disease touches everything I do & affects by body from head to toe. Chronic illness occupies a lowly position in the hierarchy of suffering, but it takes a toll. I have become a magnet for trouble, a most dangerous place for anyone to hang out. The experience has taught me extraordinary lessons about living. My life long effort to salvage my life, to wrestle from the clutches of sickness, has been a search for control & the perspective to adjust. Survival skills have been set in, & I've been told I go on the defense too easily, but wouldn't you if all but 9 years of your life you've had to deal with people who think you like taking all these drugs, or that one day, I just might even be able to go off of them. But I know, that I will have to give up 2 days a week of my life every week for the rest of my life just so I can have another day. And to some people, in their eyes, that means I've settled for a life that doesn't have much to offer, but to me I've learned to value the things I have, from the smallest to the largest, & everything in between. I really feel for the person who thinks that more is better & that what you have, if have all you really need to survive, is just settling, well, then those are the people with more disabilities than me.Their disability is of the mind & spirit & no matter what they do they will never be satisfied or happy, because they can't see past the big picture & take the time to enjoy the simpler things in life.
So...if you think I have given up & can't or won't do what you think I should to better my life, well...then you just don't know me & haven't bothered taking the time to find out, because if you did, you would have seen just how much value I put into the day to day things, which for me right now, is just knowing that I'm able to get up each day & to know that I was given another day to live my life, & that I am blessed & to never take anything for granted. Take the time to step back & look down to see the small things of life, that are just as valueable, that you could be stepping on without even noticing or caring. A big house, a big car, better clothes than the person next to you are so unimportant it's funny & yet very sad, knowing that there are still people out there that give a fuck what the next person thinks of them, & then caves to those beliefs that somehow if they don't have it all, they are less of a person, well...I can tell you, thats just not true.
Everybody is the same. Everybody is equal. We all arrived into this world the same way, & we will all die in the end. That's it...there is nothing else that matters, except to value each & every moment you have & to value each & every thing that you have, no matter how small, no matter how large.
I am not just a collection of muscles & nerves, the wiring that has short-circuited my dreams. who I am, my very identity rests in my head. That is where my being takes shape. People of sickness, those of us who suffer from our own assaults on body & spirit, know disappointment. I get it all the time, & the battle to control my head is every bit as important as combating the attacks on my body.
Each day I go through a psychological war with my illness. Not only in my mind, but in the depths of my heart too. I have tried very hard to learn emotional strength. I'm not doing very well in that department at the moment. I want to be a better person for all the struggles I have to go through. My attitude is a weapon of choice, endlessly worked. Self-pity is poison. All pity is poison. There is no time! I need a future (one I know I can't ever have), but I refuse to become a victim. My life is about surviving & floundering, trying to rise above the fear & self-doubt &, of course, anger. This is not about sickness but about the search for emotional health. This is not the answer, it's only an answer. Coping is a personal art. There is no element of science in coping, no formula or objective standard for measuring proficiency. Coping is measured against how you want to live & what you think works.
So once again to those people who make me doubt myself, & make me feel not worthy, I'm not sorry, I am who I am, either accept me or dont, life's just too short to add more stress, which in my case is the worst thing for my illness.
I am just a girl with a fragile grip on my own life, peering through the fog that rolled in during a dream so long ago & does not clear away. I am learning to cope, & for me, coping must be relearned each and every day. Learning to live with adversity is instinctive & self-taught. It is the stuff of life.
So once again...I say...welcome to my world, where I carry around dreams, like the rest of you, a few diseases, & the determination to live life my way, but...my main struggles are the struggles within that exotic place just north of my neck.
At the moment, considering, my attitude checks out ok, but get back to me tomorrow...things might have changed.
There are lots of thinkg in life that are scary. All the good stuff usually is. Think of all the good things youve done in your life. How much of it was easy? Probably none of it was, but it was always worth the struggle, Ill bet...
Some have said that Ive got guts and a heart at the same time, its a rare combination. Most people who have survived tough moments in life become tough themselves. I never did, even when I wanted too. But that was just the way I was...and it was no surprise after all Ive been through. Dealing with life at its most painful had given me both wisdom and poise, and a great deal of compassion. I wonder many times after that night, how different my life would be now if he were still alive. I suppose I wouldnt be out here.
I wouldnt be half the person I am today. Thats all a part of me now. Its part of what makes me so special. I dont know if Id say I was lucky exactly, but maybe in a funny way I am. Ive had some damn tough things happen to me in my life, but Ive beaten them into tools I can use, and beautiful parts of myself. Thats quite a victory, even though I just thought of myself as just surviving, but I also knew that in other peoples eyes that was how it looked. I had won: I was successful. But there was more to life than that, I knew only to well. Much more. Even though I no longer had that. But whatever I had or didnt have in my life at certain times or not at all anymore, I still felt better about life and myself everytime I wrote something from my heart....
