Merry Christmas!

Greetings everyone.  Dad asked me (Rachel) to write a little something on his blog for Christmas.  Needless to say, my guts are churning and my knees are shaking at the prospect of attempting to live up to his literary prowess, but I will try my best. 
I hate to say this, because it's what old people say, but this year went by so quickly!  I blinked and it was gone. I suppose that means I am getting old.  Remember when you were young and a month seemed like an eternity? But now, life is flying by at a ridiculous rate.  
It's almost 2014.  I can say it's been an eventful year.  A new nephew and my brother moving to this state are the highlights of the year.  This is the first Christmas in a long time that our entire family is living in the same state.  Ok- so that was usually my fault as I am the nomad of the family.  But I have to say, I'm really looking forward to this holiday. There doesn't seem to be that ever-present pressure of holidays past.  No worries about catching a plane.  No worries about having everything packed.  No worries about needing to borrow someones car for any last minute errands.  No worries about weather stopping our ability to come together.  
I feel like this Christmas we are all just so happy to be together, that it's going to be a fabulous day.  I foresee great food, fun games, music, laughter and a fair amount of insanity.  I see the kiddo's running around in a new-toy adrenaline-fueled whirlwind until they pass out in a sugar and carb induced coma.  I see lots of hugs happening.  I see thank yous and happy faces galore. Yep, I think it's going to be a wonderful Christmas.  
I wish you all an amazing holiday.  Appreciate each other.  Trust me, things can happen that turn your life upside down and inside out, but family is always family.  
Merry Christmas,
Rachel   
        

Special, special heartfelt

This post is about all that is good when it comes to family. Today I focus on my son, Nick, and, through association, Paige Dechausse, now a member of the family in all ways important.
      When I was diagnosed in March of 2011, Nick was making a living as a musician and guitar instructor in Chicago, performing most every night and teaching most every day. We lived in Peoria at the time and the three hours between was workable. A year after my diagnosis we moved to Dallas and screwed up the distance to a thousand miles.
     This September, Nick and Paige uprooted and moved, essentially naked, to Austin, three hours or so southwest of us. They both have sacrificed everything they had in Chicago to venture into unknown territory, Nick to be closer to me and Paige to stay close to him and, I hope, to be near me because I'm so darn cool.
      Please check out the link that Rachel has included in this post. Realize that it benefits me greatly to see Nick and Paige succeed in view of all they have given up to come to Texas. Please help support them in their efforts to bring music and love into my world and the world at large. All of your generosity will certainly be payed forward. Their goal is the moon and stars. Thanks


http://www.kickstarter.com/projects/611190169/nick-and-paige-ep-and-winter-tour-2013

More blithering

I feel decent during the day but mornings kick my ass. If I sleep on my back, it wipes me out. If I sleep on my side, I crush my shoulder, jam my collarbone and irritate my hip. If I were to sleep on my stomach I'd be dead by suffocation in a matter of minutes. As it stands, I can hold my breath for about ten seconds. Really. Trust me. That's it.
Every morning I would like to check out. By the time Amy rolls me to my back, slides my house drawers up my legs, swings me and pivots me and lifts me to a sitting position, holds me with one arm so I don't topple, pulls my arms through each sleeve with her free hand, pulls my head through, places the pivot disk under my feet, braces my knees against her own, grabs me under the armpits, swings me first back then forward and up, squeezes me to her, holds me tight with one hand while the other reaches for my pants, pulling them up and making the necessary adjustments, twisting me on the disk and easing me into my Permobil I gain a new lease on life that lasts me until the next morning. Nobody really knows what it takes to care for me but her. If she goes, I go. Instantly. Somehow. I cannot imagine any other option. I would literally die of a broken heart. And panic.
   Outside of all Amy does for me, her value as a lecturer is invaluable (?). I am bolstered not only physically, but emotionally and romantically, all the while maintaining a constant state of confusion that plagues me whenever she perches atop her soapbox, which is nearly a constant phenomenon. If I don't listen to her, I am a fool. So I do. While I may not always agree with her (dangerous territory), I always listen, even when my body language (severely limited as it is), says otherwise.
    After all, what the heck do I have to offer? I have loved her forever. Now I know why.

Oh Gregory

Back to me. We all know this blog is nothing less than an extreme exercise in self indulgence. I am king of the art of multideprecation. I use my ALS as a weapon with which to filet from the masses their ability to pity me outright. This is my gift to me. I would rather be laughed at or questioned than to be pitied.
Expect me to remain indelicate. I will always have questions you cannot answer. I will always have answers you cannot question. Just see. Don't rely on your education or life experience to support you. It is but a myriad of complications clouding pure judgement. I am nearing absolute thought. All I need is to harness the sensual depravation of Helen Keller.
This is nuts. I don't know anything. Forgive me. Here's that Gregory thing :  But for a huge chunk of meat torn from his thigh and blood gurgling from the open arteries, fading to purple as it cascaded down his leg and quagulated in a pool around his foot, Gregory felt almost giddy. He looked around at the carnage; the landscape was a canvas of gore, the metalic stench of rendered flesh hung as a pall in the air. Strewn about were the remains of a hundred poor souls, torn asunder, ravaged and entangled. Gregory stumbled, nearly fell as a brief dagger of pain threw him forward, diminishing and gone as fast as it had come. The flow of blood began to weaken as the supply ran low. Gregory felt light headed, somehow euphoric as his brain starved. He lowered himself to the soaked earth, first kneeling, the maw of his wound gaping, then lying in grizzly repose, his head pillowed by a mutilated torso, nestled upon the soft belly, his face turned tilt against a ribcage. He slept. The blood from his ghastly cleavage had stopped. 
Gregory started awake in agony. He peered down at the source of his pain, now mottled black and red, bisected by a stained white stripe, bone. He turned in wretched shock and in doing so buryed his face within the entrails of the quartered corpse beneath his head. He succumbed to his rising gorge and vomited the bile of an empty gut, afterward wincing at the burn at the back of his gullet. All the while, his leg continued to strangle his coherence, thudding and pulsing, unrelenting. The air began to thicken with the familiar boquet of decomposition. His nostrils filled with air, acrid and bitter, an excremental exhale passed his parched lips, his breath more pungent than that of the bloated atrocity surrounding him.
   Gregory wished he had never come to his senses. Here, now, cognizance was a curse. His memory was as butchered as the men scattered about. As he lay, miserable, a strange thing happened. To begin with, he couldn't move. No foul air entered or exited his lungs, the searing pain from his leg was gone, he smelled......... Nothing. His vision faltered, in seconds he went blind. He heard his last heartbeat an instant before his brain shut off.               

Brimstone hostility

Alphonse found Gregory lying all but dead, his wound a mass of green flies, his head resting in an entrail salad and vomit dressing. His pants were stiff with dried blood. Alphonse took in the hillside. "Greg, you sure made a mess out of an easy assignment! " he hollered knowing full well Gregory was in no shape to respond, near death as it were. "Yeah, you really screwed the pooch this time."
      what is this?
      Does anybody remember Gregory? Does anybody really care? Do I care? No. Not really. If you ask, I'll repost his gross chapter.
     I need space from myself. Wherever I go, there I am. Since I can only move my head you can see my problem.
     A large part of the vitriolic rants over the presidency transcends political viewpoint and descends toward racism and cowardice. I don't care to elaborate now, but the first female president will experience her own gender demonry.
      Young Earth Creationists. Enough said.
     
      Are we alone in the Universe? No way.
      Are we one with God? In our own minds.
      Is one religion right? Much more likely none are right.
      Am I an Atheist? No, I think their religion is wrong as well.
      Agnostic? No. I care too much.
      Political party? I am dismayed that the GOP has abandoned, largely under Bush, the concept of limited government. I am disappointed that the Dems cannot come to grips with the realities of dealing productivity with dissension within the GOP ranks. I find most facebook shares involving political views to be offensive whatever the slant. I'm generally conservative, but I refuse to be labeled as a camp dweller on either side. Conservative should not be mistaken as Christian any more than Liberal should be synonymous with Atheism. You can't pigeonhole me.
      Women in the military?? Certainly they have the right. Personally, I know some women who could prevail over some men I know. (funny sentence)
      I'm done for now.

Back to sensibility

How about we set aside foolish things and get gritty about what ails me.
If my nose itches, unless Amy is nearby, I must weather the storm and hope for a brief downpour. Amy is there for me more often than should be humanly possible but the fact remains that I itch somewhere almost all the time. Try not touching your face for just one day. It's as difficult as eating a slice of white bread in fifteen seconds.
When I eat, my swallow reflex is so poor that literally every bite lodges half way down, requiring the next bite to push it south and take its place. A swig of some liquid clears the last morsel. This scared the shit out of me before I learned the system. No, I don't eat better now, I have simply developed a way to sidestep this particular problem.

I cannot say enough about how much my family means to me. I can't.
I can't write about my mom. I can't.
I can write about dying. I won't. Yet.
I can write about silly things. I have. I will.

There is so much to write about that hasn't occurred to me. I need to explore more than I have so far.
I must enjoy what I have rather than indulge in fantasy and other such bullshit, but we all know that ain't gonna happen.

In the end, or, in my case, near it, I will continue to play a game with y'all, with ALS and with myself (don't go there, it is far too frustrating) until I can't.

I expect to create a stir when I expound on my thoughts on religion, politics, faith (not to be confused with religion),  science......
You may be surprised by my take on various subjects, how some of my views have changed and how some have not. Keep in mind: I've had a hell'va lot more time than most to ponder this stuff these nearly three years living with ALS.

I consider myself an authority on what I know.

I am not impressed with much of anything any more. I am perplexed at all the advancements in engineering, architecture, even, maybe, medicine I witness as I die from a bug that has been famous for nearly a hundred years.

God save the Queen!  Maybe I should have been gay. Is it too late?

More worthless than most

Egad! I can't believe so many people read what I write! Could it be possible that beneath all the reticulating verbiage lies even one modicum of message? Is there any sense left that doesn't require a barrage of written masturbation upon which to ride to the forefront of reason and understanding?
    How should I know? It's not like I can talk with my hands!

           I will try.



      There. Did you get that?

The simple fact is that its been so long since I could carry on a conversation that I have lost all spontaneity. My words have been processed through brain matter cheesecloth so many times that the end result portrays a jumbling gumbo of cheezwhiz chucking inconclusive malarkey.
See what I mean?
The world is my oyster and I can't pick it up.
Also: I am the walrus (coo coo kee choo).
I've got a long way to go to be THAT nuts!