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!

Bird post

I need to save my gloom for a sunny day that may dilute the mud of my recent deploration (I made that up, I think).
   Soon it will be Thanksgiving, then Christmas. Each upcoming holiday must be treated as my last as the odds of it being true, already many times more likely than most, become easily calculable.
   I hope that all the family I cooked for on Turkey Days past recall how honored I was to bring my little feast to the table each year.
   This bird day squares Rachel in my place, paying respects to my cookbook, flipping the winged gobbler upside down and adding her flavor and flair to every dish. She owns my chef's jacket and as so retains the lone right to modify my recipes without fear of recrimination or decapitation except where it comes to shrimp.
    Everybody enjoy the holidays in spite of my absence.

A short story segue, off my reservation for a respite from me

A strong wind cut at the trampled grasses, stirring flak and prairie dust into vortexes of life upon the arid plain. Stitched from left to right across the fields, wind battered and age weary, an ancient fence crossed, horizon wide, an endless expanse of leaning posts and rusty wire strewn with barbs.
The coyotes were on the run. A million in pack. Their numbers, all driven by identical thirst, all crazed, all insane, moved in a frenzy toward the fence. The stench from their breath and their hides, a fecal and rotted menagerie, raced ahead upon the wind. Their howls and screams ran alongside the airborne sewage of their scent.
The rabid, rancid bestial storm bore through the fence. Ten thousand animals were degloved, their living carcasses, naked sinew and flesh, continued forward, slowing, dying the death of writhing agony, trampled and bitten by the more fortunate creatures in flight. Onward the pack furied. Ever forward, ever mad.
     The rats followed, slower yet no less determined, undaunted by the distance, unfazed by the barbs. Their numbers out counting the coyotes tenfold. They moved as a great gray mass, a living sea, a writhing parade of vermin on march. A scant million paused to feed on the fallen. Disease hung in the air, intermixed with the dust trails, vile and heavy, cloying and thick with the remnants of sickness and death.
      A million souls lied upon the high ground, their clothing tattered and soiled, their rifles gleaming. At the ready, each set with grim determination, each with clenched teeth, squeezed eye, with steady hand. Waiting, waiting.
    The fanged, drooling posse tore upon the hill in a storm of tearing frenzy, leaderless, followerless, a united, shoulder to shoulder mass.
    A million shots pierced the atmosphere, a million bullets found flesh. The howls became shrieks of surprise and agony. Tens of thousands fell. Thousands fled. Only scattered few continued, struck down by a second volley.
      Even as the sounds of pain and death carried forth on a breeze of oily, foul odor, the cheers of victory took flight.
     Nobody saw the rats, nobody thought of the rats.
     Feast upon feast upon dying dogs of the prairie elevated the senses of the rodent throngs to a fever pitch. Living meat particlized their minuscule brains. The entire mass, having devoured its fill of coyote, caught wind of new prey, strange and alluring, compelling beyond reason.
     The rats, near a billion in number, ascended the hill as one.
      Not a single human saw them coming.
      The onslaught was immediate and forever, a million were trampled and eaten by their own kind as the stampede mounted the summit twenty deep. Screams were muted as scores mounted and encapsulated their victims. In the end, all that remained was an undulating carpet of gray, an occasional bone, stripped clean of flesh, a globe of white skull, the irony smell of a slaughterhouse.
     Eventually, the rats, engorged, scattered, leaving the scraps to the flies and maggots.
    New earth was turned and the hilltop was again in its natural state. The valley grew out and the fence was repaired.
      A million starving hyenas were released. This time all the rats had been accounted for.

Vent lost

Vent. This stupid machine ate a post stuffed with negative, depressing statements of futility and desperation aimed at the future and its prognosis. My prognosis. If it shows up, you will not be spared.

Back home

We are back. I'm okay. Now. I am never given to hyperbole. Yesterday I experienced an epic event perpetrated by my ever excessive thoughts and obsessives.
      I discovered that travel for me is much easier downhill than up, making it a breeze to head toward the lake (an obvious downward trajectory), bent upon hitting the dock at a maximum velocity of six point four miles per hour. At such speed, coupled with the mass of a four hundred pound chair and a two hundred pound live load, an explosion from deck to drink would seem pedestrian at best. It was. I hit liquid on the fly. Sideways. I clipped a protruding nail and lurched askew at the last second, lighting sidesaddle.
      The blasted water was only a foot deep! 
      I lay, one eye submerged, hung in my seatbelt.
     Someone saw me.
     A rumble upon the pier. A splash. A mouthful of lake fluid. A scream from behind, a release at my waist. I fall forward and out of my Permobil, into the drink. Arms tug. I choke and panic (for the first time today).
      Up and out. Soaked and cold, embarrassed. I am a failure and a fool and now I have upset everyone. I can't seem to lose for losing. What kind of jinx have I inherited from my past behavior? Why do I deserve such misery welded to immense frustration? When may I sign out? How? Why, you ask? Why not? If the afterlife is so great, as many believe, and my current situation sucks, as many know, what is the big holdup?
      I know, I know. Dark shit, dark contemplation. Yeah. Wishing for an unknown commodity is like asking to trade your life, no matter how pathetic, for what's behind door number two (which could very well be shit).
      Einstein stated that God doesn't throw dice, but He does pull wings off flies. I stand (not) as living proof.
      Why do I even ponder door number two? Hell, (Freudian slip?), I don't know anything any more. Long ago I  abandoned political correctness. Desperate situations call for desperate measures.
      I would have plunged into our pool in the back yard but Sarah put a net over it that would prevent me from bathing.
      As an end note, this entire post consists entirely of hyperbole sans factual content except for opinion. As we all know, my opinion may as well be construed as fact, thus validating all fiction expressed.

Trip approaching

Wednesday we leave for Mesa, Arizona to attend a service for my mom who died this past June. The one thousand odd mile trip is not daunting in the least. For me. You'll have to ask Amy her thoughts on the matter.
     Having had problems with the latest Tobii upgrade, I have downgraded to my previous level of inadequacy, thus downgrading my posts, in both frequency and quality, certainly affected by my upgrade of impatience.
      Don't fret. I will find a way to continue my nuisance reports for as long as I can. On that note, the chance of my acquiring a PCEYE is nearing zero. I guess older boys must settle for older toys.

Think about THIS!

We are in modern times, yet we still cling to archaic methodology. Bad for me. I may be living in the past but I certainly don't relish the fact that the medical profession shares my interests.
You say I'm wrong? The current philosophy subscribed by the powers that be in medicine is as blinded as the ancient ritualists who letted blood for centuries before learning the ridiculous nature of such idiocy. Today, the market is loaded with drugs designed to help symptoms by creating a plethora of side affects worse than the malaise being treated, yet marijuana is vilified and illegal even as it has helped many, including me, with no side affects at all. Virtually every legally prescribed narcotic can kill you. The only way weed can kill you is if you catch fire, easily avoided if you eat funny brownies.
If I hadn't contracted ALS, my view on pot, specifically, and medicine in general would have been much more conservative. As I view it all living a life of the condemned, the truth is easy to see. They have nothing for me because they may not investigate outside of their box, they may not cross the line of propriety chalked by the system in which they are entrenched, they must not remove the blinders that narrow their view despite all that surrounds them, questions begging answers.
Oh, God! Medicine is a religion! Shit!
Read me again. You can't miss it. The similarities are astounding.
I need someone to corroborate my hypothesis. I sincerely believe I'm on to something here.
The religious dogma that permeates faith is identical to that which is the most crippling disease infiltrating modern western medicine.
There is no defense for the roadway view of religion or medicine. Neither cares to change direction even if most questions will remain unanswered upon the route traveled. A simple look around would open both minds and doors to the real world, chock full of remedy and solution.

Don't mind me, I just needed to vent against everything over structured. Any construct cast in stone lacks the flexibility to become malleable enough to realize the questions answered in the REAL world.
When did we lose the ability to be impressionable?
Am I just nuts or is there something out there we don't understand about US?

Crappola

More on my condition. In my case, less is more. Less of me is becoming a tradition of sorts. Less of this dangblasted eyegaze shinola is what I need!
This IS ridiculous. Goodbye.

No title is acceptable

This is Wednesday, I am Tracy. Tomorrow promises to be Thursday and I promise to still be Tracy.
      Though I wither, I remain me.
      Though I am speechless, I speak volumes.
      I am a still cairn, messaging direction.
      I raise nothing but spirit.
      My opinions run rampant.
      Idle time is my brother.
     
      I occasionally delve into subjects politic, finding always reams of unadulterated vitriolic condemnation laced with hatred and degredatory insult. Veiled racism, homophobia and cultural depravity, ignorance driven by isolationism and blinded illiteracy courted by familial misguidance rules a vast cacophony of destructive stalwarts bent on political desecration.
      Luckily, the only outlet for such drivel is facebook, which was never designed for intelligent debate (although sometimes intelligence does break through), or a blog, exampled by this tirade........

Brief

No post today.

Cold, hard reality

Lets face facts. My struggles to stay ahead of the debilitating progression of ALS are many. In some ways I'm faring better and these positives find themselves at the forefront of publications and discussions while the less popular and less discussed detriments are ignored.
      My body is continuing to waste away. I can easily identify the two bones in each of my forearms because the muscles are entirely gone and my skin wrinkles and folds like a loose chamois draping curtain rods. My upper arms have withered and slunk below my shoulders, dive bombing to bone, leaving my complex elbow joint to lumber huge and ugly. My legs are putting up a fight, but even so they are losing mass. My thighs are thinning and narrowing as muscle melts. A sway is developing from groin to knee, more prominent on my left leg. My calves are deteriorating and weakening. Despite all of my therapies, no muscle is replacing that which has disappeared. My back and neck and gut is weakened.
      I find it easier to eat lately. I am generally less depressed. My mind remains as sharp as a Tic-Tac. I am happier than a year ago. You figure it out. I'm just in this for the fun.

Prolific..... Too?

Today is Friday and I am relatively content to sit in front of my Tobii and create turmoil on Facebook, albeit in a more pedestrian, less narcissistic way, hoping to pave the dirty path for intelligent conversation rather than perpetualizing colonic bickering.
      I can only speak for myself. Who am I trying to fool? I can only speak TO myself, often clueless as to what I'm saying, certain to misinterpret what I'm saying due to the fact that I'm a poor listener under any circumstances.
     If I had only listened to my wife all these years, I mightn't've (hey, a double contraction! Is that legal? If not, I just invented it!) found myself in the present predicament.
      A note: to date, I have nearly 90,000 hits on my blog. When I reach 100,000, I plan to print every post I have written on this site since July of 2011, over 400 posts and over a hundred thousand words. It will be interesting to see how my outlook has changed having gone from concept and prediction to development and fruition along the ALS Super Highway. Stay tuned.

All aboard!

What is ALS. Do you remember? Did you ever know? Does anybody know? Why is there no cure? If ALS is incurable, then why is anybody trying to find one? The word 'incurable' can be compared to 'unattainable' and in the comparison lies the core strength of negativity, futility, even hopelessness. Impacting this barrage of defeatist structure upon the already maligned and miserable sufferer guarantees a greater struggle against what have now been defined as insurmountable odds.
     ALS. Simply put, an error message put forth by the brain allows an overproduction of glutimate to short circuit and eventually drown upper motor neuron cells responsible for carrying information to voluntary muscle cells throughout the body, at first bombarding then with too much information and eventually killing them when the motor neuron dies and all information ceases.
      ALS within me seems to ebb and flow. There was a time when my freight train to disaster was chugging hard and moving fast. My decline was frightful and depressing. Today I see a struggle for the locomotive as it crawls upward, slowly, possibly losing traction and slipping backwards on occasion, losing grip...... On the track, on me......
      Metaphor always trumps simile. ALS is a train ride. Sometimes too fast, in some instances too slow, always too real. My ebb and flow is not really to and fro, more up and down, a rollercoaster of symptoms, emotions, pains and gains, a seemingly endless test of endurance and resolve.
     ALS takes away my speech, my movement, my breath. Doctors and diagnoses take away hope. But not from me...... I keep dragging my feet as that train struggles up the grade, my heels dug deep. The caboose is my friend as I pull this sonofabitch off the tracks. Let's see it take me now!

Yet another

I go on endlessly about what I think. I spell out my emotions and force my opinions with Gatling gun persistence. I have become an arrogant cripple on facebook. Smarmy comes to mind. Egotistical. A self proclaimed big brain in a damaged body. I even go so far as to profess to profess. I might proclaim to have a proclamation on occasion. All daring do when nothing to do. Idle time makes for addled mind.
     About how I am faring physically: some things are better. Nothing seems to be getting much worse. I am still searching for that definitive improvement necessary to get my neurologist off his throne of denial and embrace a new reality.
     I have completed a short story. The second will be done in a week.
      I miss hugging people and scratching my ass. (not necessarily in that order).

A life of Riley

This is my first attempt to post following an update to my tobii communcator software. I may be finding it a little easier to eye type. Maybe not. Possibly. No. Yes. I can't tell. At least its not worse. I think. I think.
     My last post touched upon a demented philosophy unfairly thrust into the blogosphere, and for that I apologize. Concepts of faith and confidence, especially when referencing life and death, should be contained rather than exploited. I hold no license to exempt myself from such restriction no matter my condition. I only ask that others remit their condolences for setting forth their surety, equal to mine, that they have the precise answers to questions unanswerable. I can accept opinion, validity, however, requires confirmation.
     Skip that last part. I am not a gloom and doom kind of guy. Really. I just have days when life is a struggle. No kidding. Over the years I found myself continually active. As a kid, I was rarely home, often finding trouble, always embracing it. There wasn't a tree I couldn't climb or a culvert I wouldn't spelunk. I played Pop Warner Football in fourth grade and kissed my third girlfriend in fifth. I hunted rattlesnakes with a friend and played spin the bottle on my twelfth birthday. Later on in life I would drive fast and act crazy every chance I had. I sent my '65 Mustang airborne many a time over a now gone flat bridge over the Kickapoo Creek on what used to be the connection between Rte 8 and Taylor Rd. I jumped naked off the strip mine cliffs where Wildlife Prairie Park is today...... Oh yeah, back in the summer between seventh and eighth grade I learned how to sail a main/jib Sunfish and learned how to water ski, once doing it naked at night. That summer I also got drunk and spent the night on a little island in the lake and froze my ass off.
       Nuts and informative were my formative years. They developed my uninhibited desire to do a lot of shit. I've done a lot of shit, some dumb shit to be sure, but not always......
       Throughout my adult life I found myself at odds with sedintation.
      I coached one season of JFL when Nick was four, Rachel was six and Sarah was eight. That fall, Nick began Taekwondo and I followed. We both became entrenched and have been so ever since. Rachel joined in and excelled, reaching second degree black belt. Sarah opted out but pointed out she was inherently tough and proved it by kicking ass in a tournament against a green belt.
      Eventually, I began to teach, continuing for fifteen years, quitting when I was diagnosed March 15, 2011. I am now a retired sixth degree black belt. Nick is a fourth degree black belt and has begun teaching Taekwondo in Austin.
     So...... Building houses during the day and teaching Taekwondo at night wasn't enough. For six years I coached basketball at Fr. Sweeney, where my kids attended. I later joined the River City Blues Society and was elected Entertainment Director two consecutive years. I loved the commotion and infighting!
      Along the line I've done other stuff...... Now I have it all to remember, all and more. I hate being in this chair, largely immobile, mostly silent, but I LOVE what I have to recall of my life. I daresay most people have regrets. I have none.
      I will leave this world (mentally, figuratively) kicking and screaming because I seriously doubt that my future can hold a candle to what I have now.

Death blows... I mean it BLOWS!

Death blows... I mean it BLOWS! Confidence should not be confused with faith. To me, one is borne of security and the other is fueled by hope. Where either has its merits, they are nothing alike.
      Hope may spring eternal, but I do not. Each day is a struggle for the security that easily fades when I am weak and helpless, only to be brightened and reaffirmed when Amy appears, when she speaks. Confidence glows when I see my family, hear from my friends, when I can again understand that I am never alone in life. To die is to leave all who I love, all that I love, requiring faith that beyond heaven on earth lies a Utopian fantasy better than life, perfect and eternal. I believe a bird in the hand is better than two in a bush, even a burning one. I cannot rely on parable to convince me that I will be in a better place when I die.
      I want to live as long as I'm not killing those around me. I have no interest in experimenting with the afterlife. I'm not confident enough to feel secure in its existence and I refuse to take it on faith.
      I truly believe that outside of faith and hope, the world is as clueless as I. Belief alone does not prove reality.
     I don't mean to piss anybody off. I am not printing a recipe for argument. For those with faith who have every confidence in their beliefs, I am happy. I, however, must cling to what is tangible. I cannot imagine trading in life for anything. I cannot replace perfection.

Clinical report

Clinic today. A single bugle blurts out an abbreviated victory blat muffled and collared by the hustle and bustle of a dozen professionals tending furiously to twice as many often vocally challenged and universally physically diminished souls ravaged by the relentlessly progressive Satan disease, Amyotrophic Lateral Sclerosis.

      All of my tests today, including blood pressure, blow test, weight, swallowing, chewing, breathing, occupational therapist evaluation (her words "wow! Amazing!), physical therapist evaluation (her words "excellent definition in your legs! Wow! You're doing something right! ), speech therapist, neurologist (even he was surprised at my improvement over the last three months).

      I entered the clinic with my tricked out Permobil, lights Blazing Blue, beclothed be me in Venice Beach shorts, Nike flip flops, an optic orange Hawaiian shirt, a peace symbol dangling from leather shoelace encircling my neck, hair shoulder length and platinum blond, Oakley shades hooking a button, spec's on my nose, armpits sweet with Old Spice, a pinch of unlabeled mystery cologne splashed under my heavily bearded chin, manicured nails (finger and toe), Crest breath, of course, and a take no prisoners attitude!

     Amy followed me with the bugle. It turns out she can't play a lick. I don't know why she brought it. She and her inability to blow is the real reason the victory blurt failed. It sounded more like a fart, which made all the ALSers uncomfortable except for me, because I knew Amy did it.

      Pizza Hut delivery is here, I need to celebrate!

Off the reservation, I

TIME. Nothing but. Not enough. Wasted. Out of. And time again. Up. Out. Of the essence. No. Heals. Like the present. All in the world. Is on my side. In a bottle. Cop. Travel. Machine. And space. Warp. Linear. Circular. Before. Less. On. Past. About. Never on. Ly. In. Just in. In the nick of. It's clobberin'. Magazine. What. How much. How little. A limited. Sensitive. Stamp. Record. Slowest. Faster. Every. Never on. Restricted. Limit. Less. Fixed.
      I could go on, but if I do the references to time will waste my...... Time, will continue to be a waste of....... Time, will consume too much of my...... Time, will be a waste of........... TIME!
      Amy is feeling marginally better. I feel pretty good. My family is great.
      Tomorrow I go to my quarterly ALS clinic. I hate it because I'm thrust into the reality of the medical community that monitors decline and ignores improvement. This is not my reality nor is it a fair environment for my particular assessment.
     The only reason we attend is to keep a connection to the sources of gadgetry available to help me function while in my temporary state of disrepair. The only fate suffered worse than mine at the hands of clinic is absorbed by my neurologist, who must interview patient after patient, the vast majority being as resigned as he to the misconception that we are all doomed to failure. Year after year the process remains unchanged, thus guaranteeing unchanged results, guaranteeing failure.
      So, why do I go? For the gadgets?! Yup.
     Why else? So that I can get well on their watch, so they may post their first victory, so they may confusedly rejoice, so they may be asked how in the world this could come to be, so they must shrug, so they must defer to me, me. So I may change the world, booyaa!

A plea

Today Amy is very sick and it again dawns on me that she attends to me every hour of every day. I hate that she is sick. I hate that I am sick. Today I have no interest in posting clever little sentences with clever word selection. Basic rules today. I feel pretty good and my biggest task is to convince Amy that it is okay for her to care for herself. After all, its not like I'm going to run off or spend money.
She dedicates herself to me, the kids, the grandkids, everything. I am like a special needs child who can't even roll over in bed. I jam my thumb every hour and Amy is always there to fix it. She feeds me, she bathes me, she hugs me, she loves me. Those who know her see only a part of who she is. Until this terrible disease grabbed me, I didn't see all of her. Now I do. She may not believe it, but I do. We are more intimately entwined than seemed possible a few years ago. I need her, yes. I love her more. I sincerely believe I cannot live without her. I am certain I don't want to. Get well, get well Amy

Who? Huh?

Who reads this? Reveal yourselves, minions! Do it! Expose your motivation! Offer up a sacrifice. Please. You don't have to use your real name. I am Zoltar the Mede of Panza. Who are you?

Message cutlery

What to say? What to say. I am writing stuff completely unrelated to ALS, a relief.... A relief. I sometimes need to separate myself from my disease, but with a caveat, in doing so I separate myself from posting here. Unfortunately or fortunately, that is what I plan to do. Don't worry, most of my plans run screaming from fruition. So..... Adieu.... Until at least tomorrow, which brings to mind something about leaving with such sorrow..... Something like Shakespearean something or other... I never finished THAT! I am doomed to unfinished mediocrity. Or am I? Let me just add

A gobstopper dilemma

I write a lot of crap. I will guess that I have broken every grammatical rule ever made. I need to dumb down my writing. I often don't understand a word I write. Maybe most of it is pure nonsense. The problem is that I can't do much else. If I don't write, I don't communicate. This is fact. I take it as a compliment that anybody reads my blog. Keep in mind that what I write is no where near as important as the fact that I write at all.
Writing with my eyes is slow and tedious. My ideas form as often as waves on the beach, consumed by the sand that is my ability to share. The stories evaporate and the remnants carry back to the water of origin that is my mind. Sucks like a riptide. My head is brimming with myriad adventure forever trapped by an impermeable cast of bone. I am awash and drowning in a sea of undiscovered bullshit. Unleashed upon the world it could fertilize the deserts of the earth.
    See? Crappola. Crappochino. Craptastic. Shinola.
      If it weren't for my limitations, I would spill Good'n'Plenty, careful not to be careful. ALS has created a monster greater than itself. Foolish in its most basic form.
      My agenda, in the works: short story- assassin's remorse. Another - attack of nature. Coming soon to a grand opening.
So...... If you like crap....... The sluice gates have rotted away! Stay tuned.

A few words

Ups and downs. ALS is expert at rallying emotions on to a virtual roller coaster, creating the perfect vehicle with which to launch a bipolar experience equalled by none. Add the physical deterioration and you have the storm of utter frustration and disillusionment manifested in absolute clarity. Reaching this rock bottom existence crystallizes reality, focuses intent and leaves only one option. Death is unattainable. Only life remains. Presently, life is a battle. It can only get better because I won't allow it to be worse. I have much to shed so that I may more easily rise to the battle of recovery. There is no other way.

This is why....

The infrequency of my posts is in direct correlation to my motivation to communicate via antiquated technology. Until I can upgrade, my posts shall remain wanting. I apologize for any inconvenience this may inflict upon the general public. If you are frustrated enough to seek resolution through outside means, feel free to contact your service provider. If you cannot afford a service provider, one will be made available through the totally worthless public domain loaner bureau, where a minimum wage telemarketer will be sure to know absolutely nothing about your problem, yet waste hours of your valuable time expousing on the difficulties of single parenthood, all the while cracking and popping Juicy Fruit in your ear. If you were to ask for a supervisor you would discover it to be the gum popper's mother who will waste hours of your valuable time expanding the complaint of raising a child who has a child. Don't despair too much. It is the way of our world.

Words are weapons

Fatigue limits my posting efforts but nothing can stop me altogether. This fact is supported by my post today, a post detailing the amazingly inadequate state of my medical care.
I was diagnosed with ALS on March 15, 2011, followed by a meeting with various caregiving agencies. The social worker, the breathing guy, the physical therapist, the occupational therapist, the mobility guy, the nutritionist and the neurologist all dropped by to offer their services as my need increased. This sucked more for Amy than for me. At that time I had few symptoms and had not yet accepted much of anything anybody said.
We were scheduled to meet with my neurologist three months later in a clinical setting. We did not go. I had no interest in sitting around with a bunch of ALSers. I didn't see much value in the company of misery. I still don't.
Here in Dallas, the place to be if you want state of the art ALS care, the system is the same as in Peoria. We have clinic every three months, where everybody sits around the room waiting to be assessed and documented. This would have more credibility as a system if we were REALLY EXAMINED, but we are not. Not once have I been measured for muscle loss/gain, making it impossible to determine whether I am diminishing or building muscle (which I believe I am, despite the claim that it is impossible). I can continue, so I will.
I have come to believe that the reasons we aren't individually measured and evaluated to determine our course and progress are several : we are considered terminal and false hope, along with wishful thinking, has no place in a doctor's office, there isn't time or money enough to test or evaluate every ALS patient, without a precedent, there is no reason to consider recovery is possible.
I would like to set a precedent. I am gaining muscle mass. I can now eat what I want. I can control my weight at will. I breathe better.
Something is going on. The breathing tests and others given at clinic support my recovery yet only scratch the surface. No additional testing has been suggested. I guess I've not yet shocked them from their habits. I need to become the Pink Elephant in the room.
Now you see that I must post, fatigued or not.

Still me

What is relevant? What is really important?
I'm still aware of my appearance, more concerned than before, primarily because I no longer control it. I have full confidence in Amy's judgement and taste yet I cannot hide all my frailties and diminishments, my boney arms, my distention, my lazy right eye, my ever present mode of transportation.......
Vanity still thrives within me. I consider it a bastion of hope, a sign that I am still in the fight to regain myself. I see it as a goal to again capture my former self, along with my imperfections.
I have travelled while impaired. I can rate a dozen states on their ADA compliance. I have been to California by car, to Peoria, Cleveland and everywhere in between. In November I will drive to Arizona, January maybe Memphis, maybe Las Vegas, who knows what I will see, who I will meet?
So, how I look is important. To me. That is why I have grown this gnarly beard and long bleached to death hair. In my mind I am still me, indestructible and cool. Shock and awe baby, shock and awe!

Touching?

Sometimes I look back at my posts and hate them. I hate that I spend so much time with so little to say. A bunch of mumbo jumbo followed by a sarcastic disclaimer of some sort seems to be my MO as of late..
So, let me change up my pattern.
YES! ALL CAPS!
RECENTLY, OVER THE LAST SEVERAL DAYS, I HAVE BECOME ACUTELY AWARE THAT I HAVE NOT TOUCHED MUCH OF ANYTHING IN THE LAST YEAR.
Not The doorknobs, the toilet handle, the stairs to the boys' room, not the waistband to my underwear, not Amy's hair, not a glass of water, not a steering wheel, not a pot or a pan or fork or knife, not a bar of soap, not a hot dog, not a dog or a cat or a mouse or a rat, not a hammer or saw, not a keyboard or a screen, not a remote or a broom, not a book, not my ipad, not my iphone, not my Tobii, not a tree or bush, not a flower, not a loaf of bread.
I could continue forever. The smart thing to do would be to dump this post, but that would require me to be smart. Instead, let me change the tone. Let me tell you HOW I feel rather than WHAT I feel. (I do hope that I have touched a heart here or there).
I feel Amy's love. Tactile it is. I feel worthy. I feel happy with my grandsons around me every day. I feel blessed. I love being in Dallas with my daughter and her family. I feel honored that Rachel stalled her career to be near me. I feel humbled that Nick is moving from Chicago to Austin to be near me. I feel everything. It occurs automatically in absence of touch. I feel everything. Its about time I show it.
Amy is the glue to my sawdust. She squirts me so I don't blow away. She has an endless supply. I am helplessly stuck on her. I hope she isn't water soluble in case I start crying. We are inseparable. I feel happy about that, yes.

Everything is hunky dorey? What does this mean?

A conspiracy of complicated modalities has raised its head to reveal the truth in Occam's razor. Too little or too much supports the failure of every medicine, whether it be pill or prayer. The answer is only the answer if it begs for and procures the solution asked, if it provides the cure requested.
Up until and including now, the answer has eluded me, us, everyone, hiding behind all methods bent upon revealing its truth, hiding behind explanation, waiting, as I wait, patient as I am not, its deviltry masked yet translucent, visible yes, seen, no. The undiscovered truth, the undiscovered answer, the lost translation lies behind God, beyond His peripheral, yet in plain sight. It is beyond reach unless it decides to expose itself. Then and only then will the true cure be revealed.
Waiting for this answer is finite. Yes, waiting is finite. Life is finite. I am. My life, my struggles are. Finite. Yes. I don't have time for God to turn around (I've never gotten the impression that God ever looked back), or step aside (again, step aside?) and let the answer step up. I don't have time to wait around for a miracle. I must make my own miracle. I must believe in ME. I'm fading, but I know daylight fades only to reappear, so may I. Hopefully not as a donkey. All kidding aside, a donkey wouldn't be so bad........
Seriously, this is not a long, convoluted, abstract effort to describe my thoughts on checking out. I just wanted to give the appropriate entities a kick in the ass, whether that be God, me or the pope, and let us all know that I'm serving notice that I am tired of this shit! May the best man step up. (I guess I need to practice just in case its me, which I suspect).
This is not any effort to put myself on a level with these guys. I simply use characters of renown to bolster my conviction in self belief, the only weapon available capable of slaying the dragon ALS.

Oh, boy

I don't know, from one post to the next, what I'm going to write about. As a matter of fact, I have no idea what I'm going to write about in this......... Okay, I got something....... No, its gone. Wait. I see it now. Forget it, that's crap. I must pee but if I call for Amy on the baby monitor and she escorts me to our room and I do my business and we come back and she takes my hand off the controller and I try to resume this post, the eye will be gone and you know how poorly I post without an eye.
So, after writing all that, letter by letter, I REALLY have to pee. I mean REALLY! My eyes are floating now. I'd be worried it might cause me to shoot blanks, but the truth is I've been air firing since my vasectomy back in  1984. Nevertheless, my time is limited, even if I sport a somewhat shy bladder. Here goes.
      What is going on with me? I jump from sadness to happiness to depression to elation to boredom, making pit stops along the way at every station of emotion in existence. Today I need to pee, so I've kept it light and silly so as not to further burden myself with any more weight, emotional or, God forgive, physical, upon my lower abdomen, causing an accident of perceived infirmity that might lead to an unwarranted family discussion involving the potential need for purchase of Depends or, oh my Lord, no!, a box of catheters! I know too much about catheters, especially those dreaded Texas catheters. I go pee now.

Inner cranial supposition

Remember that all exceptional experience must come to an end in order to make way for the next. I use the singular term because each deserves individual attention rather than the indignity of being identified as part of a group.
My exceptional experience can easily be defined as unique, and as such it has permeated my essence as well as those near to me. I have become a conduit through which has flowed the emotions of a lifetime, once held tight, kept, now released, naked and unashamed, for all to see, to feel, to mull over and critique, to embrace or discard.
I have become an open book, though the pages are written in language of the heart, undecipherable except through emotion and empathy, unreadable except through my eyes. I cannot resist exposing myself lest I die before those around me understand that I am made of more than my parts, that I have only recently discovered my true makeup and that only the razor's edge of simplicity defines character and being. Everything else is a fabrication of convenience and security.
To say I'm alone would be folly, though folly rules the day when I look within myself, where I am singularly upon the battlefield fighting for my life, where my weapons are but mind and spirit and my mount is determination.
I have a responsibility to continue on forever, however short that may be. That being said, I'm outta here before I become a brain in a jar.

Amy

Once, when Amy and I were dating, I pulled an epic boner by suggesting we see other people. In my mind I imagined......... Well, I don't really remember what, other than a breeze, went through my head that day. Needless to say, my experiment, obviously double blind, (me blind to my own stupidity and she blindsided), proved disastrous.
      A back story should crystallize my ignorance. Amy and I started dating the summer between sophomore and junior year, our first official date being a trip to George's Pizza in East Peoria followed by a run out toward Pekin to catch "The Exorcist" at the Starlite Drive In. A perfect evening's events with which to impress a good Catholic girl. I know what you're thinking and I sympathize. I was king of the idiots back then and have yet to be unseated, cementing myself to the throne as I toy with my ALS.
      Anyway, a week later, marveling at the fact that she didn't dump me, I told her I loved her. She didn't vomit, but some may have risen to her mouth only to retreat down her throat, though I doubt it because she kissed me and I didn't taste anything bile-like. I was relieved.
      I told her I loved her every day after that, each time hoping for a reciprocal proclamation. I couldn't bear it when she simply told me, over and over again, "that's so nice". Months went by and my dismay mounted. Finally, in November, in the Pizza Inn parking lot on Sterling, I badgered her, I considered ultimatums, I cried and I got my way. She didn't deny me any longer. She told me she loved me. She also let me know that this was a 'forever' thing. Forever and ever.
      As I battle ALS, forever seems now. She wasn't kidding. I forgive her for taking so long to come to a conclusion that was forgone from the beginning. I knew right away.
       So, to get back to that infamous day the following spring, that brainless experiment where I nearly erased my love, my family, my life. Amy conducted the requisite torture, deservedly so, upon me, which I took like a boy, whimpering and apologizing in desperate anguish and fear until she felt my punishment had been satisfactorily meted out, whereby she holstered her figurative whip and ended my torment.
      She is strong where I falter. If there is a heaven, it was made for her.

An interim exercise

Offered up while I compose my thoughts, this is not a true story :       Alex was having a good day. He had finally mastered riding his big bike and was cruising down Biscayne towards the park. Even though his mom had told him to stay in the driveway he knew she wouldn't really be too mad if she knew how fun it was to fly down the road with the wind in your hair.
At the end of Biscayne, where Lake Highlands crossed, a huge puddle of muddy water had formed at the low spot where the two roads met. Alex grinned and pedalled harder. He hit the water at full speed. The cars traveling on Lake Highlands locked up their brakes and skidded into trees on both sides of the intersection. Muddy water spun off Alex's back tire and sprayed a skunk stripe up his back, soaking him down to his underpants. He laughed. Then he hit the ridge on the far side of the road and went airborne into a giant patch of thistles, lighting from his bike and flying head first into the brambles. The stickers peeled the shirt from his back, taking the skunk stripe with it, leaving Alex's mud streaked back exposed to the elements. His front tire popped and scared a girly scream out of him. If  he had peed his pants there was no way to tell unless you smelled them, Alex was pretty sure nobody would do that, not even mommy.
Then he flew over the handle bars and back flopped into the thorny brush. A thousand pins pierced his skin. A thousand thoughts flew through his head. If he didn't pee before, he was sure he was peeing now.
Alex jumped out of the patch and clutched at his back, trying to scratch the itch away. It didn't work. He looked back at the muddy puddle. In a frenzy, he fled toward it, spun around and back flopped into the foamy brew. When he splatted, the itching stopped. He smiled.
Someone grabbed his ankles and dragged him out of the Pond and lifted him like a broken doll. It was his brother. Isaac began petting Alex and running a hotwheels Camaro on his belly. Alex began to laugh. Then he saw his mom and he began to cry, then she began to laugh and he turned his cry into a laugh again, which felt much better, then he thought of the trouble he was in and he cried again, then he shrugged, scratching his back on the pavement, and laughed once more.    

Decomposition

I am witnessing a decomposition of my fan base that directly corresponds with the decomposition of my composition. I must remedy this or quit writing until the doors to my creativity open again, perhaps in another life.

What DO I mean?

When I come to a crossroad I treat it like a roundabout, circling in search of the least resistant path rather than turning down the hardscrabble dirt trail leading to healing. I expend all my energy warding off depression and fear, leaving nothing for mending, nothing for recuperation. Amy must carry the weight of my mind as well as my body. I cannot discount the enormity of her task.
      At a time past I elaborated upon my lack of fear. Today I must admit that fear plays a roll in my mind.
      I fear not dying, languishing and diminishing instead, destroying Amy in the process, draining accounts with my needs, failing to sever my ties to life........ Just melting away yet never quite succeeding. Lingering.
      Enough negativity. I continue to hope that we can kill the monster in the room. To date, we have slowed it down with lasers, magnets, infrared and determination.
     I need to end this post in a unique way, so I will add a couple silly stories I put together for my grandsons, primarily Alex. They are full of errors, but they translate well through my speak program. Enjoy or ignore.           
     Alex came home on the last day of school carrying a megalopolus 183 snot gun and walked into his house looking for somebody to glop. Isaac and B were goofing around in front of the TV until they saw Alex. B picked up Isaac and ran out of the room before he could get off a shot. Grandpa came down the ramp from his bedroom just as alex swung the megalopolus 183 snot gun to the left and pulled the trigger. The gun started glugging and tooting and burping and belching. Then it just exploded in Alex's face, six pounds of industrial snot covered his head. Grandpa laughed so hard he peed his pants and tooted so loud it scared some pee out of Murphy. Alex's mom had snuck in behind him and laughed so hard she peed her pants. B and Isaac came back and saw Alex and B peed her pants. Isaac laughed but had already pooped his pants.                   
     The most marbles Alex could fit in his mouth was 131, so he jammed two into each nostril and one into each ear, one under his chin, two under each arm, tickling his pits, a handful found its way into his underpants, and when he discovered room where his hiney hid, he dumped a hundred back there.
     It was hard to Walk with all those marbles sliding around, especially the ones in his underpants, and those in his nose felt like giant boogers. Sitting down was out of the question with 100 marbles rolling around his hiney.
    Alex waddled into the living room with over 200 marbles stuffed into every spot he could think of with the idea of showing his mom. She sat on the couch and when alex came in he tried not to smile but couldn't help it and a dozen marbles popped from between his lips which caused him to laugh, dumping a dozen more out of his mouth. Then he sneezed. The two marbles in each nostrils became bullets shot from a nose gun, breaking a glass on the end table and knocking the remote out the window and into the pool. The sneeze started a chain reaction that ended in a toot so powerful as to rip a hole in Alex's underpants, sending 100 marbles 100 miles an hour into the side of the refrigerator, blasting a hole so big that a Watermelon fell out and smooshed on the floor. The rest of Alex's marbles fell to the floor and were lost under the couch along with the marbles in Alex's head. His mom chuckled and checked her facebook.

Word rape

What am I doing? Why have I been wasting everyone's time by posting one word, a handful of words, nothing useful or interesting?
      I suppose I could blame my underindulgnce on my inferior eyegaze issue, an excuse, a poor one evidenced by the existence of this very post, denying a problem insurmountable. On the other hand, it might be that so much effort goes into lining up the letters and spelling the words that content rides in the trunk while my baggage takes a back seat in order for me to maintain my practical sanity. I can write nonsense such as this all day long (and often do), but nonsense is a cop out. I used to write about my ALS (ad nauseum), about my youth, about my apprehensions and, to a small degree, my aspirations, even on occasion my fantasies. Now my aspirations have devolved into fantasy. I must never forget what I could do before the disease lest I lose my dreams, where my abilities are intact, and my waking imaginings, where I can walk and talk as I did in my former life.
      So I falter and stumble and crack my head on a coffee table in my mind, hopeful of a trauma that cures me. I've tried wracking my brain to no avail. Meanwhile, you must navigate the flotilla of crap that percolates from the bowels of this blog.

Brevity has its advantage

I am going to the zoo today in order to confirm the superiority of the human race by observing animals presented in an environment designed to stifle the instincts we have extinguished from ourselves.

One word

Home!

I've not died

The internet in this Cleveland Holiday Inn is for shit and my Tobii device runs slow due to its 1995 state of the art processor. Apparently my eyesight has changed because now it is extremely difficult to focus on the proper characters necessary to write anything even remotely clever without longing for an anvil to magically materialize above me and come crashing down on my skull, thus releasing me from the agony of complete and utter frustration. Alas, all I can do is whine unintelligibly to Amy.

I am now in Louisville, Kentucky at a 50 dollar Econolodge with a better shower and functional internet. Who woulda thunk? ITS STILL HARD TO TYPE!!!! I'll fix it when I get home and git bak wit ya. I ain't foolin'.

Short on words, long on humble

This weekend has proven to me that the sum of family and friends is greater than its parts, and I can live with that.

More crap

More crap Nonsense speaks volumes when properly appropriated from the bowels of fear and disillusionment, never quelled, rarely hampered by progress. My diatribe salutes the macabre textile of ridiculous segue bent on skewering the truth and flinging its carcass upon the coals of humor, avoidance.
      The point is followed by the body of the sword. I ride upon the shaft of the arrow, a passenger only, bereft of sight forward, saddled blind, a soldier of panic on a joyless journey into cobalt eternity.
      On the other hand,  I might just be a guy in a wheelchair with too much time on his eyes.

At old games of nonsense

Another week goes by and still the eyegaze technology seems to have determined itself to destroy any progress I might have made in mastering the art of communication through eyeball fixation. This development is none too helpful when I am limited such as my situation dictates. The exceedingly frustrating manner of my limitation simply puts me on par with a limbless gazelle being chased by Teddy Roosevelt in the outback of the Serengeti. I have devolved into a lower life form through the effects of technological failure, but I will emerge semi intact, proving evolution along the way, evident merely by my accompishment.
      Speaking of evolution, not necessarily Darwinian, the processes of thought adapt or fail to adapt in unison with my ability or lack thereof to digest the realities engulfing me, day by day, a maw at the ready to devour all that remains of my function, a typical evolution, blind as form dictates, affectation influenced only by my efforts and successes at influencing a segue of permanent conduit.
     I have waxed philosophical many times but I am no philosopher. I have touched on religion but I am no theologian. I have spoken of spirituality but I am no spiritualist. I have talked about death but obviously I'm ignorant. What, exactly, am I driving at? Hell, I don't know, I'm as clueless as everybody else. Everything in life is a guessing game, which makes my guess as good as yours, I guess.
    I'd say "in conclusion", but it sounds too "concluded", so I'll simply "not conclude" and leave y'all hangin' while I prepare for my Peoria trip. Bye for the time bein' an tanks fer playcatin' me wit yer attendncin' me writin'.

Sorry, so sorry

This eye thing is really driving me nuts! I believe the cause to be a problem with my right eye. I have issues involving its function; it is becoming lazy, slow to open and heavy lidded, sometimes difficult to open at all. Add to that my proclivity toward grammatical accuracy and the problem is further exacerbated. In due time I will find a way around the problem or simply move on to the more advanced PCI, providing the funding comes through for the device. Meanwhile, I count the days to our Peoria trip, incidentally a stopping off segue on our trip to Cleveland, where we have appointments with Dr. Nemeh, a gentleman who has already helped me through two Skype appointments and of course a visit to the Rock and Roll hall of fame!
     Since starting this post my right eye has devolved into an orb of primordial stew, simmering, drooling down my cheek and curving dangerously near my lips. I gotta go before I taste the carrot like residual slime of putrefied optical snot.

Working on it

Until I get my eyes under control my posts will be painfully short.

A slight return

I cannot seem to find the focus to write using my eyegaze. I can't easily choose letters. I must figure it out.
      Briefly, we will be visiting Peoria in early August to reconnect with friends and family and to see Nick and Paige at Tower Park. They play at 9pm on Friday, August 2nd and Nick plays at 9pm on Saturday. Before they play we can talk (well, not me, but I can listen) but come 9pm we want to be absorbed in their music as we now so rarely see them these days. Forgive me when I cannot communicate much. Be secure knowing I'm glad to see you.