Day after day

I grow more weary with each passing day, waking  every morning from a dream more vibrant than my waking existence, where I can still walk and talk. Upon waking, I discover once again that my real world remains harsh and diabolical, relentless in its passion for my destruction. I lock down my body and seizure myself until all my muscles scream, releasing an instant before they take control, relaxing in the basket of fatigue, soon asleep once more. Part of me finds slumber to be my way out. The less I am awake, the less time crawls along, chiding me, teasing, dangling sleep before me only to snatch it away. When I'm finally through with sleeping, I look forward to its embrace once more. If dying is slumber I'm all for it.        You have been bludgeoned by my imagination. I apologize for the awful over use of the word 'wake', however I stand by all confusion and apprehension created when attempting to separate fact from fiction. Which is entree and which is seasoning? Only good snippets contain parts of both.

I wonder if I could write a post mortem post?

Of course, my own would be no more than fiction, most certainly macabre to the max. I need to draw nearer to death in order to flesh out the details required to lend a rationale to my fairy tale capable of suspending disbelief. I have always tended a horror garden, where life begins and ends every day, a mishmash of creation and decomposition, cauldron after cauldron of primordial stew loaded with the angst of the untold stories intermingling within the brew. This is but one of my sources of storytelling, distinguishable by its nature. The sources of my posts here deploy the pure essence of truth, more than adequate to describe the horrors of my experiences. No exaggeration required. The simple truth is that I need very much to switch gears within my blog. I must mix up my soup. I have grown depressed with constant self-assessment. I am boarding a segue train to imagination. Be prepared to be confused. I often am. Do not fear, I will often install reality, my progress. Tune in, tune out, I will be sure to separate fact from fiction. I'm just looking to have some fun.

A question

Why? Why do people continue to read my posts? Is it now habit? Do readers harbor a compulsion? Has morbid curiosity morphed into a curiosity of the morbid? Do readers seek a conclusion of sorts? Do you believe I will survive this? Do you really believe I can regain my former literary form now that ALS has taken my hands and voice?Do those of you in Peoria wonder when I may visit? Do you realize that all conversation will be one sided? Did you ever expect to read a post comprised entirely of questions?

Nearing take off

On March 3rd we embark on a journey 1500 miles west to explore the concept of traveling cross country as a party of one toting around a two hundred pound bag of flesh best suited for the car top carrier were it possible to lift me so high. As is more practical, I will ride passenger, at arm's length, available for adjustments, loaded with my Parrot headset, 7 days (1500 songs) worth of music, movies, all brought to me courtesy of my ipod, ipad, iphone. I urge Tobii to consider providing its eyegaze technology through Apple, if for no other reason, at least I could scroll facebook smoothly rather than in the herky jerky method provided by Windows 7. I would love to take part in a beta program following a Mac platform. I would expect it to be faster, smoother and more user friendly. Better integration between eyegaze function and internet communication would be a great help. I dare say I have friends in Sweden I have never met. Please put some pressure on Tobii. (just kidding). In case you're wondering, in case you're unaware, I decided to delay my feeding tube surgery indefinitely. I don't need it yet and I don't want any issues on the trip. My next post will explore how I feel about leaving family and security for a month of sponge baths and peeing into a Gatorade bottle.

Loads of nonsense

To those confused by my last post, I apologize. After having read it, I share your sentiment. Lets just agree that I was bolstering my word prediction library and lost sight of reality. In hindsight, I would rather not shoulder all the burdens of the world. I will, though, flow with empathy.

Reality returns, for better or worse

To those of you who were confused after reading my last post, I apologize. After having read it myself, I was convinced I had been hacked only to discover, upon closer examination, that I had hacked myself with stupidity, bent upon conveying a message yet failing miserably.  Moving forward. I have two weeks before I'm on the road to California, in or near LA, to visit a Chinese healer. This trip, while tough on me, is tougher on Amy. She has to do everything. Every single thing. There are risks involved in a middle age woman transporting her quadriplegic husband across the country.  I admire her amazing courage. She is certainly braver than me. I know she cries, but she manages to shield her torment from me in order to keep me happy, more to protect me. I could not ask for a better lover. She will succeed, therefore I will succeed therefore we will succeed. All that remains is determining what, exactly, constitutes success. That is the real adventure.  I admire her amazing courage. She is certainly braver than me.

Get behind me as I consume all bad

I offer myself as a foil, a barricade, a sponge, a shield. Send all your problems to me. I promise not to run. I can and will absolve you of your stresses. You may toss your worst anxieties and I will deplete them and pay the remnants forward. ALS has the ability to render most ailments weak and irresolute. They cannot weaken me and they will certainly strengthen you. I have found it time to reciprocate.

Confusion supplants blind determination

Here we are, two weeks before our trip, one week before my tummy poke and two hours before a speech therapist evaluates my voice, of which little remains and I find myself wondering whether I've been on any kind of track conducive to better health or not.
I fight myself constantly, beating my brains to a pulp, shredding my mind, obliquely aware that as ALS shuts down my body, screwing with what's left is nothing less than foolish. Nonetheless, I still battle, fight rather than flight, not sure what else to do, singularly aware of my Custer mentality. Not fighting seems counter productive to me, though fighting an unidentifiable enemy blindly hasn't seemed to have slowed the onslaught to my body. I have concluded little over the last couple of years outside of the dreary realization that much of what I theorized last year constitutes today's condition. I need to refrain from prediction. I am sick of my own cluelessness. Every day the bar lowers for me. I guess when it lies upon the floor and I can no longer crawl beneath it, I die. Morbid as it sounds, simple and straightforward, the reality remains complicated and unfocused, less morbid yet more depressing. All of this negativity constitutes the core of my illness, I know. Escaping this enigma is paramount. Not fighting or running leaves me in a quandary. I find myself anything but predisposed to solutions other. Pardon my word-weird sentence structure, sometimes it helps feed my inner evil, visualizing readers struggling over whether I'm trying to be clever or whether I'm just dumb. Joke's on you, joke's on me.

Misery does not love company

My last post, in its diabolical tone, lay proof to my sentiment that a downer narrative evokes depression, resulting in a loss for words.   Not much response to a post of such nature cements my notion to the roof of my mouth, joining with a million other thoughts unspoken: quit writing negative crap, scaring the populace out of words.  I must lace my dog poop with Chanel No. 5. In the future, my posts will contain more facets than one, allowing for more palatable avenues of response. So, for your advantage, I offer legitimate information. Today we set up an appointment for February 20 to have a feeding tube installed through my flesh into my stomach, allowing nutrients and alcohol to be introduced via a syringe into a tube. The surgery, minor as it is, requires general anesthetics and and an overnight stay. Wish me luck.

Running on empty

Understand, if you can, what has become of me in the nearly two years since my diagnosis. Today, almost nothing works. The two most devastating developments have been the loss of speech and the inability to separate myself from my predicament, whether through distraction, meditation or anticipation. In the past I could direct my thoughts to a place of tolerance, imagination; I could extract my core being and create a life full and improbable, where I could pass as healthy. Today, that ability is infused with continuous flashes of reality, shredding contentment and elevating depression. I cry. Despair is my dark passenger, he visits me too often. Until now, he has remained peripheral, presently he has taken the helm. I have heard it all. I have discovered that nothing is to be believed without considerable thought. Early on, God and prayer took center stage. I now see it as appropriate that this was the opening act, undefined and undeveloped. Any focused definition of God is one of imagination. I'm still waiting for my wrong to be righted, not holding my breath, aware of His perfection, precluding any correction on his part despite any amount of prayer. Lacking any reason to continue with dogma driven fantasy, all the while aware that I could be stricken down for my sarcastic blasphemy, hopeful at some level, knowing at all levels it's absurdity I continue on. Desperation takes on many branches as it creeps along, parasitic, all the while obscuring the real damage, blinding the real truth -that the root is despair and the tree is already dead. In no way do I intend to train my focus on western medicine. Western doctors and their brethren comprise the only group that has admitted failure. All others continue to vow cures, replete with detailed karma and ritual. If a pill does not work, take two or three. If a chant doesn't work, do it again. Again. Again. Ad nauseum. The bottom line here remains the same : I must create my own internal placebo effect. I must believe. I fear I am too exhausted to offer energy to a theory as I battle to survive what consumes my body and has taken a front seat in my head. Currently, I am a hindrance to Amy as she drags me toward her confidence that I can be cured. I try my best to understand but in the end  I remain nearly dead weight. I will conclude by saying that while many friends and family offer prayer and support, none are in my shoes, for which I am eternally grateful.

Eyes on California

After much consideration, hand wringing (by others, not me - if i could wring my hands, the trip would prove unnecessary), worries from many, silent dissension I'm sure and a lot of questions, we are hitting the road to California March third. Our route will intersect Tucumcari and Flagstaff, maybe a segue here or there. I will fill in details later.

Speed post

I just doubled the speed of my eye gaze dwell. OH MY GOD!

To pass the time, I struggle.

Maybe worse than all my physical limitations is the fact that they combine to create an environment conducive to nothing less than a cage surrounding a straight jacket, a device causing me to produce excess saliva attached to another bent on stealing my voice. Any two would be palatable, all together they become monstrous, compressing my chest and panicking my mind. I've had several choking incidents, none fatal, two that may have been close, bringing me to the realization that I could not verbalize ~¨this is it ¨ or ¨good bye¨. All of these restrictions have descended upon me as reality plucked from my imagination, unrestricted and relentless. I am watching from my chair, helpless and dependent. I have descended to watcher status, so I watch- football, basketball, boxing, mma, food channel, movies on tv, at the theater, on netflix....... The rest of my time is divided between watching the boys, rolling around the house, napping, listening to music and  THINKING. Too much time to think. Too much time to ponder. Too much time to wait around to see what happens next.

The reality within

Have any of you wanted to know what I thought of as the worst aspect of ALS? Don't lie, don't worry your inquisitive nature with any prospects of my discovery. We all have our dark thoughts, our deep excursions macabre, our occasionally surfacing morbidity. Truly, I share with you whether you can admit to your curiosity or not.  No easy task lies before me as I contemplate upon my contemplations these many months, considering my plight as I slip and slide, clutching at air, hope diminishing as the disease continues to manifest itself. Today i find myself struggling with the apparent failure of my medication. To date, I have found myself in a better physical state with regard to my spasms after having eliminated the drug designed to ease the symptom. My mood leveler drug, costing hundreds a month, did little more than dull my emotions and is no longer taken. The new Wonder Drug my neurologist was so excited about last month turned out to be a phase three bust, drop kicked and discarded. Apparently, Rilutek was messing with my liver function, requiring me to relegate the $16,000 a year pills to an increasingly large dope graveyard.  Even with all the talk of ineffective drugs, I cannot honestly say that I hold a grudge, citing my low level of expectation since my first encounter with ALS. My real dissapointment lies within the realm of communication, or, more accurately, in the lack thereof. I can no longer speak well enough for all but the most intuitive to understand. I can no longer defend my position. I haven't the ability to alter one's notion of my mental state. This i hate. Despite all condolences, all support, all contrary takes, this latest development is the worst so far. I could live life in a chair as long as i have a voice ; without one is close to untenable. What's next?

New eyegaze upgrade, new difficulties

 As I enjoyed an awesome birthday week in San Antonio, my Tobii communicator decided to upgrade its eye contact protocols and mouse interactions, requiring me to learn a new system. In the long run, i can see its superior efficiency saving time, but for now, I'll have to stumble once again, no small feat for a guy relegated to a wheelchair. My birthday celebration extended fore and aft of the actual date, January 30, culminating in an extreme case of over the topism, all of which I enjoyed immensely. Not the least of my favorite surprises was the sheer bulk of my birthday cards. Over 200 such correspondences cover three French doors here at home. Thanks to you all. I shall endeavor to maintain my surrealistic existence from afar, saving you from the puny reality of my physical presence.