A tough existence

I'm not sure how to continue this blog. So far, I have described my life as a melting ice cream cone. I feel too weak these days to sit up properly. If my hand is not placed in a precise manner upon the controller, I cannot move. I fear most that as may my life grow darker, my posts will also reap the dusk. Hopefully, my present day Doldrums only delay a sunlit tomorrow. I hope so. I could really use it.

Of food and quality of life

Of food and quality of life. Of soup and seasoning. I love to cook. Presently, I cannot even direct the process. I also love to eat. Presently, it is so difficult to chew and dangerous to swallow that I no longer enjoy the process as much. Easter approaches and all I can do is roll around, straight-jacketed by my affliction, generally hamstrung, hogtied, certainly gagged, tolerated, placated, encouraged; who am I but a collection of bones bent upon solving a multifaceted dilemma without the aid of understanding a single thing. I remain clueless after two years, frustrated and scared, dependent in all aspects. All my blustering, evident in my writing, has proven nothing more than that I can turn a better horror story than I can tolerate, than I can survive. I long for a Korean dinner where I can pick up my own chopsticks, grab up some kim chi, chew with confidence, swallow easily and enjoy immensely. I long for Amy to be able to concentrate on her own meal. I long for independence. I try mightily to comprehend the application of energy, any energy, to my particular disease. How do I know this energy is not juicing my ALS? Is the influx of such energy a short-lived phenomenon? Melting. That's me. I am the wicked witch of the west. The primary difference being that she took a bucket of water to the face while I am seated in a stockpot, set to simmer for months, years as my body slumps and my head lolls and all the toughness is extracted day by day. Lately, when I fail to distract myself, I fall into a combination of panic and discomfort, frosted with anxiety, alleviated only through narcotic and cannabis. Don't ever drink beer through a straw. Don't ever cut sushi in half, thus creating a  mess we will call sushi stew. No high fives without help. No hug reciprocation. I'm sure, even now, that Master Zhou helped me while I visited him in California. Whether that help held a key to unlock the door to ALS understanding is a question left unanswered. I feel I'm approaching an intersection of sorts, maybe near, maybe far, where I (will) may choose my home stretch. I'm not going to project my decision now. I will say that one route leads to health love and happiness, my preferred destination, while the other track supports the train to a prolonged, protracted descension to death, a journey I will most certainly truncate by exiting the juggernaut. I conclude by saying that while I have any core strength left, I will continue to fight, even if I don't have a clue as to how, but if I'm living in a Hoyer lift and shitting the bed, I'll be insistent upon a way off the train. I hope I can get help with my exit. 

Home at last

I'm home now. Last night I slept in a bed for the first time in nearly a month. Its too early to provide a proper assessment of our trip. Therefore :                                            the dark, stormy night dissolved into a misty, hazy dawn as a red sun burned through the horizon. Heat signatures bounced from the vacant pavement as daylight ascended. No life arose. The bleached skeletal remains of trees long dead pockmarked the landscape. A horse's mane of dry grass bisected the highway, emerged and lifeless from the cracked pavement. A wind, once rancid, simulates life as its invisible force moves the environment to the present tense.                  I find myself within my imagination, standing alone in the world, straddling a long faded white line on  a lonely run of asphalt stretching from nowhere to nowhere. I walk toward the sun, mostly blinded, not caring, shuffling forward....... Something strange, simple yet compelling, different, enlightening...... There, ahead in the road, green, singular and natural....... A plant, life, renewal!  I approach slowly. I hear something from behind me, mechanical, but my fascination with my discovery offers but a tin ear. As I stoop for a closer look, a robotic device skirts my crouched form and snatches the sprout from the crumbling blacktop, tucking it within a compartment designed for retrieval. In shock, I stand quickly and back up awkwardly, nearly falling, flailing my arms. A cool metal clamp catches me. I turn to face the machine, my rescuer. WALL-E.  Apparently I have stumbled upon someone else's imagination.

Storytelling in abbreviation

He awoke from a dream like all the others; the early morning sun burned through the haze, dominant in the sky, invasive within the room.      Bad, bad, bad! Lets try again.        It was a dark and stormy night.      No, no, hell no!       The breeze took out the mobile home park.     Huh?     Small green insects penetrated his skin and entered his bloodstream, causing pain so intense as to render him unconscious.    His splitting headache was aggravated by his multiple personality disorder.      I can't seem to catch the phrase.          Try this: a million screaming hinges pierced the night as the multitudes marched blindly through the streets crying out for daylight. Blood coursed from their ears as the hinges opened upon their minds. The collective that was the nightwalker's clan disbursed in agony as daybreak approached. Their job complete, the hinges retired as dust upon the ground, diluted by breeze, forgotten. The doors, lacking attachment, dropped and fell flat.            The last time he fell off the wagon, he caught his bandanna on a post and nearly strangled before the post snapped, cracking his skull, causing him to flip off the side in a twist, hitting the ground, one leg outside the wheel, the other inside. The wagon continued over his crotch, bouncing over him without a care. A half full bottle of johnny walker red clunked him in the head. His right hand clutched his genitals while his left snatched the booze. Singlehandedly he thumbed off the screw top and upped a swig. As he swallowed, he decided it was safer to stay off the wagon, drunk, than to risk death in the fall.        For those of you who expected more than drivel, wait until I get home where I can more easily write.

Lucky seven

I recently finished my seventh treatment with Master Zhou, one of particular significance, and at the moment I feel more confident than at any time on this trip. Since I've been told that I've garnered an attitude contrary to the California normal, the pressure has been thrust upon me to get my head out of my Claven and start to listen to those who care rather than those who collect. During my session, I was able to pull my knees up toward my chest a bit, something I haven't been able to do for a year. I also took a few assisted steps afterwards. I'm smart enough to know that ALS is still hanging around, I just need to transplant my self pity and depression with a mindset more conducive to recovery. With all the help here, I find myself for the first time malleable. If I succeed to my imagined goal, I promise to write a book chronicling my journey. By the way, the Los Angeles County Zoo offered more kids than animals, better a study of sociology than animal husbandry. The art museum rocked, but too big for one day. My only disappointment was the lack of significant works of one of my favorite artists, Jackson Pollack. Two pieces, while Picasso had his own gallery. Wow! What a glaring sentence fragment! Feel free to correct all my mistakes. Off to Walmart!!

Brief blurb

Just as a sidebar to my last post, I wanted to let you know what we do in Los Angeles when I'm not getting wrangled by master Zhou. So far? Marina Del Ray for live music and dinner, Onion please Shakey's Pizza, Venice Beach for ocean and culture shock, today we visit the LAC art museum for some culture. More to come. Amy has visited our back yard and picked a lemon for her water, visited our front yard and picked oranges for my juice. Maybe 80 degrees and sunny, nice breeze.

Okay, good news is rare

Hold off with the cheers and high fives until I can at least give out a few details of my fifth session with Master Zhou last night. Afterwards, take a moment to consider exactly what you can believe, prepare yourselves now. Also remember that I'm the world's most unapologetic skeptic.  No, I am not cured. ALS still has its hands around my throat. However, Master Zhou is prying at them and making the disease falter. How? First, understand that I'm not taken in by voodoo, be it Christian, Buddhist, Islamic, Hindu, Wikken, you choose. I have no interest in or patience for scripture of any source (except for Mary Shelley, ; that youngster could write! ), mostly disappointed in the rules, regulations, noose of original sin, the hellish consequences to be borne upon a people created flawed by a perfect God. Logic betrays soft consideration. It is the little guy I let in on all confusion perpetrated upon me, whether it be voice, written or evoked by attitude.  From the shrines at  Master Zhou's school, especially the big Buhdda in his entry, I have deduced that he is a Buhddist. In none of my treatments has there been a trace of spiritual or religious preamble or caboose. If Master Zhou believes his talents are divinely given, if he has achieved enlightenment through dozens of reincarnations, he doesn't say.   His silence frees up my logic pal to concentrate on more important things.  Lets talk about Masters. I know many. I myself am a Master. I hold a sixth degree black belt in Korean Tae Kwon Do. I taught TKD for 18 years. Some titles of Master can be earned in a few weeks, a few months. I might be a master of lead identification and work site safety after taking a six hour class and acing the test. The reality is, the true masters are not measured by certificate or diploma, but by dedication, sacrifice and patience. By such standard I am no master, nor are most.  In my opinion, not alone, Master Zhou is one of the elite few. Something about him,  80 years old, just over 5 feet tall, long bald, humble and unassuming, rings differently for me. HE CAN EASILY PROJECT ENERGY INTO ME AND I FEEL IT. I've had several healers, even a past life regressionist, ask me if I felt something warm, if I feel vibrations, buzzing. Mostly I've been truthful: No, nothing. But on a few occasions I've said maybe, torching firestorm of proclamation... if energy produces heat, as I believe it does, then Master Zhou is running on 220 volts while my other encounterers have the power of a 9 volt battery. All of my treatments have included very intense, often painful Chinese Massage and energy transfer in no way disputable. My most recent visit to the table found me in for energy movement so intense as to feel like a blowtorch had been applied to my feet, the heat focused very specifically by an elderly Chinese man with a rolled up Scot Towel. No parlor trick, no blindfold, no shit. In a week he has lowered my level of fasculation, greatly increased my range of movement in both arms and blowing eliminated a growing back problem. I still have ALS, but these days its along side me rather in front, less an obstacle, more of an annoyance. Yay!

More stuff from me

I hope I get better. I'm frustrated that the changes I've experienced better identify with coping mechanisms. To date, I cannot honestly say that ALS has been hampered by my efforts. I have no way of  knowing whether the disease has been slowed without a control by which to compare. I am very sore after 4 sessions with Master Zhou, and though I'm certain he has the ability to project Chi, I'm less than certain that the energy can be applied specifically enough to combat ALS. I am afraid that any doubt on my part will be identified as a lack of faith, a shortcoming of which I am all too familiar. I am still searching for an elusive sign that ALS has stumbled, that a chink has rendered its armor penetrable, fallible. So far, treatment feels like a wet towel over gangrene. I plan to continue my sessions here in California, still looking for success. Meanwhile, in my off time, I roam around Los Angeles taking in the sights. Today, the ocean. And, as usual, I try to grasp hope and faith with the intention of stirring it into my bucket of fetid reality.

About my treatment

By most accounts, Master Zhou has turned 80 today, but if you were here he would appear younger in spirit, certainly strong and determined. He does what he says (of course in Chinese), he is certified as a doctor of Chinese medicine and is renowned as an energy healer, his claim to fame being able to superheat a wet, cold paper towel enclosing a piece of Reynold's Wrap foil simply by hovering his hand a few inches above the towel. I can attest, through personal experience, that he is easily and always successful. I am not talking warm here, I am talking HOT! Too hot to tolerate for more than a couple seconds. There is no denying his authenticity. The question still to be answered is whether his skills can help me. I am more than a little hopeful.

Not about nothing

I find it confusing that nature, in its random complexity infused with a geometric pattern and limitless color, can contain within its folds the human race, nearly without instinct, devoid of nature's expression, riding upon serenity as a blanket of anxiety, bereft of calm. I find myself an exceptional example of such distinction. In my struggle to recognize that which is necessary for survival, I fail to identify the elements before me, obvious, containing those essential ingredients of a life worth living. Rather, I succumb to my own frailties, peering within, shielding myself from the natural energy pervasive throughout the universe, awaiting my discovery. Still I linger without faith, fearful that my personal malaise, my lowering Purgatory, my dread and fear is nothing more or less than nature's design, fate incarnate, my destiny realized. Who am I but that which has run its course upon this living world? By what divine right should I expect more than I have been given? I respond that there is no divinity, only life and death, and that life cannot continue by looking only within, and that only an assimilation with nature, too rare an occurrence, must take place. All of these rarities combine to create a near impossible conclusion comparable to a miracle, equal to chance. To procure such a revelatory signature event requires selfless devotion to the concept that all is intertwined between man and nature, that quantum mechanics lays the track beneath the connection and that such intermingling allows for the rarity to become commonplace, continuous. The obstacles to success lie within, that entangled confusion obstructing free association between the two entities, self and nature.

Posting from Blythe, California.

I would have posted sooner, but the Super 8 on Sunday would not recognize my Tobii and the Clarion last night had no internet at all. Tonight, the Regency has come through. I'm not sure my posting accuracy will be good enough for Rachel to properly edit and share mistake free, but since when have I cared about that? Actually I've always bugged myself when I exposed my high school education with my grammatical limitations.


It is now morning. Last night I got a case of crazy eye lazy eye and couldn't focus. Now the road calls me. Until later. 

An afterword An afterword An afterword

Okay, three afterwords! Tomorrow morning we leave for California. Amy has done every single thing to prepare for this trip along with taking care of my moment by moment needs. She is the real life wonder woman. We will be gone nearly a month, returning on the 27th or so. Consider this undertaking for a moment. Amy, 54, will drive every mile on the way out. She and I will communicate via a pre programmed set of phrases entered into the voice interpreter, quick talk, on my Tobii. She will know my needs when I gaze at the phrase and the computer speaks. Our only other form of communication will be body language. This is why my first miracle request of my Qigong master will be to return my ability to speak. It is both interesting and disconcerting that losing my ability to talk is in many ways worse than all my other losses. I am certain that many, though too polite to comment, consider this trip nothing less than dangerous folly. Well, today and tomorrow and the next offer me a return to my former life, where my sense of adventure was manifested in reality rather than left mouldering within my imagination.

Looking around me

Today marks a year in Dallas. In two weeks it will have been two years since I was diagnosed with ALS by my friend, Dr. Pat Tracy. I still feel bad that he was the one who had to drop the bomb on me. Upon reflection, upon looking back, browsing through my earlier posts, I have discovered a glaring omission hiding within the folds of almost every written diatribe. Absent is something so obvious, so fundamental and so important that only a self absorbed, self centered fool with blinders installed (me) could fail to recognize it.
The simple truth (and it is really simple) is that I'm not alone with my ALS. I may carry the disease, but a world of others share my load. Certainly some more than the rest, to be sure, though any is significant and all should be recognized.  And so, from here on forward I roll upon not only my own wagon but involved with a multitude of strengths forming a train of support, having just realized it has been there all along. I need to tell: my wife, Amy, is the first reason I am alive today, but she is not alone in selfless contribution. Sarah and Tim have welcomed us into their home and their lives without apprehension of the chaos created upon opening the door to grandparents. Rachel changed her life so she could be with us, going so far as to transplant to Dallas. Nick has spent a fortune traveling from Chicago on several occasions and is in contact almost daily. If I go into too much detail in crediting the hundreds of family and friends who have provided financial help, moral support, spiritual support, Christmas cards, birthday cards, emails and facebook correspondenses I would certainly forget many, so I say this: I don't plan to travel solo any more. Luckily, I have never been in this battle alone. It's about time I realized it.