Thursday, October 21, 2010

Hemingway of Rockwell?

   My deepest self is conflicted with a simple honest question Hemingway or Rockwell? Who or what shall I be as things go on? Hemingway attached life,  living a large and vivid life. The ugly American was just that... loud ,crass,  with a ability to share his limits,faults, and fears with others. How Earny challenged them and accepted nothing till/,well till the end. Then as a coward in the night he went far too far. He would  not accept life's terms or limitations at any point. Rockwell  is simpler times with family and friends. Moments simple moments of life captured and shared. Times remembered on bad nights to keep the present at bay till she passes to a better moment. Leaning towards both... I want to get out go and do things amazing vivid things... fun and fierce things. Yet I also wish to just be surrounded by good friends and family and make memories...
    So, I shall opt for both.  My mancave makeover started with a bed in the bag all I wanted was a cool space to call my own.. awesome bar and such. Think of the missing link with surround sound. Now,the truth of it. I want a gratitude list of a man-cave. Not written but displayed  moments with pictures, in the details. Bright happy colors and  .things of childhood simple times fun times . As Happy Gilmore found, I want a happy place. Jill once asked me to write a gratitude list. Simple request problem is those list are for people to stupid not to realize how selfish they are while stuck in a ugly  moment. So this shall be my compromise.
    I have come to accept my new normal, and by accept I mean fight it tooth and nail till there is no choice but to accept it. Once again doing the easiest thing last. To enjoy the good and the bad, to realize life aint all apple pie and ice cream.. to hope and pray that I can be the best me in the darkest most selfish moments to come. The last week has been full of disappointment and fucking reality. I hate reality she leaves no room for hope, compromise. or rationalization, some of my favorite coping skills.
    Bad beat one: Though I have been given the referral to the mayo clinic for a trial the VA decided not to write the check. This is what I have hung my hope on since I got out of the hospital. Again believing I was special and not only would be in the 22% that are helped or the 12% of those that get a little better but the most few who wind up cured. This crushed me sounded like a sad- sack movie trailer for days. Then I talked with my shrink, she always gets my ass back to center, even though my center has never been all that calm ... or any where near the center. But my dear Jill does help with the little, the big, and the ugly thoughts and feeling that run rapid through my mind. We will cover that later... shes has a mammoth heart and a soul void of judgment. Love that broad.
   Bad beat two: SSI disability sent me to a sleep clinic for a Pulmonary function test., This is nothing new done dozens of them. This is a painful test for me. I exhale hard do different types of breathing while sucking on a hose. Done them at some of the best hospitals in the sates they stick me in a glass box with NASA type hard ware  then they lock me in. I breath as  a sadists stands near by yelling harder, keep going, don't stop.My lungs are weak always wind up on the side of the glass dizzy and confused. Yesterday I learned two things one according to the sleep clinic I have shrunk a inch and lost five pounds... classic good with the bad.  So, we get to the test a most  condensed  version of the  equipment ever made. A simple waiting room chair, a small desk, big ass hose, and a angry teck( truth- that ones on me.) So, we get to the test, first breath, she yells harder, faster, keep going and I do... the dizziness starts, the tunnel vision and finally the cough. Reaching for the desk trying to stay upright in the chair. Its on wheels the desk fly's I wind up on the sucking of office floor. Humility and pain, two things that can be both vivid and memorable , just not this time. That has past ribs and head still hurt from the fall. That humbling ugly moment is gone  it only took 24 hours, progress not perfection.
    Good beat, shit happens today is today and who knows what tomorrow will bring?  Maybe a vivid fierce fun, honest , A Ugly American, an sarcastic Hemmingway of  an Rockwellian moment ... We can hope
  

Thursday, October 7, 2010

ramblings and rantings of a semi sane fool

      This, a good morning the coffee hot, black as Satan's heart, and  scotch  a damn fine creamer. Yesterday got word from SSI disability that i need to see their doctors, apparently Duke, Ashville, University of Kentucky medical and West La medical  aren't enough. So more tests, the same tests and explaining to yet another man , person of  medicine what my illness is.
    The fucked thing about a rare disease is most of the people have not dealt with this since medical school. They call LCH a orphans disease, when I first heard this I thought of Oliver Twist " Please sir, I want some more." In the place of porridge I'd like some treatment.Orphans disease translation-  few have this, sorry, you are fucked. There is an option - I'm still waiting for approval from the VA for a trial at the Mayo Clinic. Great place for this thing. They have actually cured a few people, slowed the progress in others , back tracked it a bit  in a few, and not "that" many died. Fucked thing this is hope and hope is good. Fighting is great and beating the odds amazing. I remember when I first heard of 2- CDA chemo and its  promising potential I had a mild anxiety attache. I owe the IRS 120 G's and will never have the gigs I once had to get out from under the debt. Then , I laughed and thought.... Quality problem.
    So, now I pray to be allowed to spend six months in Rochester, MN during the winter (-20) doing chemo. I remember once praying for things like, her or it. Whether  it was a shinny new bike,a Oscar, Twu-lub, Stephani Palmer in high school or Julie Burns is kindergarten (many, MANY, far too many others), and a gnome that would magically do my home work. Funny thing, I do not pray for the Mayo Clinic, or healing, or any of the things I maybe should be. Instead I pray to be a better man- to live with dignity, to be less selfish, zero tolerance for the why mes or not fairs,and more man of the moment. Try and fail try and try and try. This is what it is.

Monday, October 4, 2010

curing the crazy's with truth....WHOOSAH

   What to write, where to go with this. Should I go sarcastic or sad emo bitch, maybe tough guy who fears nothing? I've been all these things and they all where lies. Should I chat about pain and suffering? The dos and don't of a terminal disease? I haven't done much right but dear Jesus do I  have the wrong ways down pat. Seems like the last thing tried , the very last thing attempted - the simple and easy thing I try last ...Is the only thing that works.
   Prime example,I waited seven years to tell anyone about it. Waited till I was crazy with pain and fear.... Truth is I waited till I was having surgery okay, it was the third  surgery then I begrudgingly   told anyone. I was toxic and weak. thinking the whole time that it was the strong thing the man thing to do.  Now, with the cat is outta the bag... everything is easier... they still think I'm nuts just  not nutty nuts instead it's,  "Damn George, this shit would get Gandhi slap a girl scout."
   I never thought about how selfish it was to let my friends and family worry about me. Not knowing what was what. My strong way was so the wrong way. Believing that I had suffered in silence and to find out my silence was deafening. No matter how far i pushed or fell outta grace with my actions some stayed. They are still here and they are not going anywhere. As for the ones my actions forced outta my life now have time to make some amends and attempt to make it right.

Thursday, September 30, 2010

as prescribed

     "Extra Innings," the game could be over the game should be over yet here we are. Two years ago October I had a cold ... nasty thing coughing up bloody hair balls for lack of a better term while trying for a awesome visual. I don't know where to start or what to write this comes from Jill my get a grip councilor.  She is a doll I met from an attempt of drama that left me in ICU for three days. Funny, now I'm supposed to be all about the moment... the good, the bad, the ugly ones, all equal  all shall pass. Nothing stays for to long with me any more... But I digress. So, two years ago I had an open lung biopsy that showed a rare and terminal type of lung disease... I was informed about that there was an issue in 2001 so like any ass i went straight into denial  stopped paying taxes and lived for the moment... and the moments where vivid . Went from here to there and when the symptoms raised their ugly heads would crawl into a bottleor a piece of pink... these where my comfort  foods . Drink till I forget and fuck till i feel good. Not recommending this.