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?