Last of year

I'm still too sick to fabricate much of a post. Happy New Year. Thanks for allowing me to bitch throughout my last post. Incidentally, I have yet to hear back from Your Highness, assuming I'll hear from one of His loyal yet misdirected minions. Sorry, but I call it as I see it.
Guess what? As of 2010, there were 1.6 billion Muslims on earth and 2.2 billion Christians, non affiliated population amounts to the third largest group. Nearly half of all Christians are Catholic. Try and guess which group is rising the fastest? Religious unity does not exist. Faith and simple spirituality, however, seems to rise above religious dogma, sin, written contradiction, blame, judgment and condemnation, guilt and fear.
I'm not really spiritual, but I do have faith. Faith in the human spirit, certainly not to be confused with any kind of Holy Spirit. We can better help ourselves and each other by supporting faith in humankind and collective energy than to rely on unsubstantiated accounts of a third party, one that, if real, surely exists on a plane not of our imagination, but of something beyond such, leaving us to create a personification in our image ready and identifiable to allow us to grasp onto something we can understand. Likely that there is no conscience in creation, no intelligence in design and no design in evolution. Judging by all the shit going on in the world and the fact that Amy has a shit deal leads me to conclude that nobody really has a fucking clue.
I don't expect much response to this tirade. You can all chalk it up to my despondence and my disease. After all, forty one percent of ALSers become mentally impaired. Maybe I'm one of them.

Rambling rant

If God exists, a God as biblically described, then He has really screwed the pooch when it comes to His treatment of my wife. There is no doubt in my mind that if God is an involved sort of deity, he has failed to involve Himself with her well being. She is saddled with the impossible task of caring for me, all the while maintaining her composure while I cry at the drop of a hat. She has, literally, no time to herself. I am a project that requires around the clock attention. All of my weaknesses must be met by her strength.
A raw fucking deal for her. Her sadness must be veiled as mine dangles, bait for empathy and pity. She never falters. I cannot meet the expectations fallen upon me while she exceeds all expectations she thrusts upon herself.
Indeed, the religion based God thing needs to step it up. He will find no more deserving soul. Don't give me that original sin shit. She is no sinner, never was. She is a saint, my saint, perfect, and she doesn't deserve the hand she's been dealt.
So....... If you're the praying type, pray that God gets His head out of His ass and helps her.
I'm tired of all of this ALS crap. Help Amy. Don't waste your time on me.

Very brief

Very brief. Alas, I am having difficulty. Its been my companion for some time now. Christmas was great. Me, not so. Caught a cold. Can't blow my nose. Tough to do anything. Look for Amy to write.

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!

Mind's eye

Post Turkey Day. All is good.

      Me? I'm okay. Dwindling still, but I hang in by daydreaming and nightdreaming what it was like to have full function. I can recall even the most minuscule sensations of touch and feel as if I still had them.

      Fasculations have invaded my diaphragm. So far, its strength remains. My respiratory malfunction is centered on my throat, which wants to partially collapse when I inhale, really frightening on occasion. I'm convinced that ALS moves around my body in search of the path of least resistance, ever creating a chase, equipped with the fastest horse.

     I've quit trying to achieve any semblance of health outside of reality. I feel like I look. I will cut my hair and trim my beard when I feel well enough to warrant a visual change brought about by my wife through proxy vanity. Don't misunderstand, I feel pretty good, all things considered, even well enough to care more about those around me than for myself, a significant hurdle for such a mental confusion as I am. See? I am a word loader, different from a word hoarder, the same as a camel with a hole in its hump, spewing the collective about with nary rhyme nor reason, sewing the ground with meaningless spittle, drowning the ants and diluting the natural fertilizer.

      If you think that makes any sense, I reluctantly welcome you to my world, where nothing works but the mind. A fearful prospect is born where reality is overtaken by an overtly extrospective brain function akin to H. P. Lovecraft on crack, a collective of overabundant glutamate triggers pulled all at once with reckless abandon, even as I wheel myself in circles trying desperately to corral them from the masses of innocents and unbealegered souls.

      I am a skull on a pike procured from Vlad. I am a dysentery to normality. I climb the crumbling quoins of established reason, constantly at odds, ever battered by the tunes of civility ripe with contradiction and vitriolic humor vexed by insecurity!

    That's what I think, so.... Naaah!