Lunch at your expense

Yesterday I deleted a potential post. The statement was bold and accusatory on several levels. I rarely ever hit the clear button, but after Amy's comments regarding the content, I dumped the entire post.

Sometimes I sling my writing from common decency onto the dungheap of blame and fraternization. I get pissed off at so many smug, self righteous do gooders claiming to have all the answers without having a clue as to what I go through every single minute of every single day. Pikers!

Crap! I didn't mean to go there!

Soooo! While I'm changing subject, what do you think I should write about? What do you want to read when you open this blog? I can write about anything, but I'd kinda like to get off the depressing ALS thing for a brief time.

I can, and will bullshit. It is the fertilizer of creative writing. I'm fond of languishing in the stuff. So, pour some sugar on me and wait for the flies. Draw up a chair, clothespin your nose and bleat your request. I'll try to serve your desires. Keep in mind the longer you wait the more rancid the dish.

Brief note

How can I be expected to continue writing about ALS after over three years of nonstop postings? You'd've (is there such a thing as a double contraction, Sarah?) thought, after first imagining and then living the ascending symptoms of the disease I'd've (Sarah?) grown weary of the subject.

I am weary, yes. As long as I write I am only that. If I stop writing, weariness is the least of my problems. If you're worried, welcome to my world. Sometimes I marvel at my continued existence. When I don't, I don't. There is one consistency : if I write, be it here or Facebook or email, I live. When the writing stops, I'll've (Sarah?) stopped.

In all honesty, I'm not counting the days. I'm counting the years.

Critters and such

Do I feel anything? I'm more aware of my surroundings than I ever was before ALS. Inwardly, I'm acutely aware of every itch, tweak, numbness, twitch, murmur, full bladder, intestinal gurgle, bowel activity, fasiculation.......

Flies. Often one lands on my long straw and crawls upward as I'm drinking. Flies land on my leg, my hand, my face.....  I can't move enough to encourage them into flight. The tickling is terrible.

Mosquitoes : when I see them land, I'm witness to their blood fest. They stick, suck and turn crimson. I feel everything. Once, while I waited in the van, a mosquito lit upon my knee, engorged itself and popped.

Wasps : never stung yet. One landed on my nose and crawled across my mouth, pausing to investigate some spittle at the corner. I, of course, remained perfectly still and silent.

Birds : bird shit hit me. I didn't flinch.

I have no control issues. I never wear a diaper. No feeding tube. Bib? Yes. I'm unable to chew with my mouth closed. I can't spit. Drooling is purely gravity. I don't inhale fluids if I concentrate. My diaphragm is a pussy.

Commotion makes it almost impossible to eat, but ear splitting tv or music is no problem. Go figure.

People, kids or adults, crying or mad, upset me terribly. I'm more apt to cry than to laugh. I laugh at inappropriate times.

If it weren't for Amy, things would be bad. With her and family things are great. Better to live for a known future than to die and enter an unknown one.

Ice bucket and other things

Our little video contribution to the viral ice bucket challenge isn't likely to follow into viral land, but we hope it helps to put our appreciation out there. In my opinion, if this challenge had never existed, and a simple plea to donate to ALS research had been released instead, that people would dismiss the plea as generic and common, thus garnering nearly no attention and little money. The imagination of the creators of the challenge have proven the power of creativity of a concept in fact brings people together for a cause rather than relying on individual donations devoid of unification for a cause. The last sentence is a structural nightmare, but I'm not changing it because, despite it's crappiness, it gets my point across just fine. The grammar police can lift me out of this chair and kiss my boney ass. Only those who ignore content really give a shit and by their own reaction they are missing my more relevant message I'm trying to deliver, whatever that is.

To and for Rachel : I never use run on sentences. The sentence is designed to be short. Like good poetry. Yep. Dogs with short tails carry less crap. A short Beard is less apt to carry critters. Short is good. That being established, I say:

If, in the minds of intelligentsia around the globe, a single thought or consideration, proposal, belief or hypothesis were to be found as universally agreed upon, without room or cause for prejudice, bias amongst all the souls of earth, inherently neither good nor evil, most obviously faith neutral, binding all humans to its perfect storm of reason, a cultivation of common structure compatible with all forms of neural anomalies, agreeable to even the most demented, palatable to the most callus of arbitrarians, the most scholarly scholars, the megalomaniac of megalomaniacs, the most egocentric egos, the narcissistic, the em-paths, the Atheists, the agnostics, the theists of all kinds, it would have to be the last day for our civilization as we know it, and the first day of a new age.

Whoa! Wasn't that an exercise in excess? The sorry truth is that my mind has always been at home with such calamities of thought. Sometimes (not nearly always), I try to keep my metaphorical peculiarities and awkward vocabulary choices in check so as to not render my readers befuddled at my befuddlery. Even so, I love everything conceptually and structurally wrong, imagining all the red ink adorning my assignments if I ever went back to school and turned this shit in. I'm sure I know what I mean, and its the teacher's educational job to figure out what that is. I'm sure I would be one lousy student.

Sure. The word above used too often. Read anything. A pattern always emerges. The words of description repeat themselves. Sometimes the effort to diversify turns things to crap. Spontaneity works best for me. I never rewrite anything and I rarely shitcan something I've started. Whatever comes out makes the cut. Poor you.

This is reality

Nobody has my perspective. As much as I appreciate all those who praise my appearance as a positive contrast to what they expected, those who pray for me and view my condition as testament to the power of faith, to those who see me as somehow heroic, I am only a man fighting an uphill battle against formidable odds both physical and emotional. I'm ultimately nothing special. Amy is special. She is the one who deserves all the accolades. She should have crowds surround her and hug her and kiss her. She fights for my survival every second of every day, scouring the Internet and making every effort to locate individuals across the globe for people who may help me, all constantly interrupted by my immediate needs, which are many.

I'm not going to say that nothing will work for me. I don't exclude belief or chemicals or therapy or prayer, but, in truth, none are going to succeed individually. Not medicine, not exercise, not diet, not God. No single modality is nearly capable of solving my core problem. No amount of wishful thinking on your part will succeed. Only my wish may seep into my subconscious and render a change for the better. Conversely, my negativity may strike with equal impact, leaving me static or worse.

This is no fairy tale of any proportion. The route, whatever the outcome, is grueling and painful. While my body fails me more each day, my mind must endure the calamities of random thought infused with the battle of depression and the machination of my overactive imagination.

I'm certain of few things. For one, this is a bitch. I want to live without ALS. I'm not so sure I want to live with it, but I'm not Robin Williams and don't have his option. I'm in no position to demand anything, but I demand everything, all the time. I'm luckily unable to speak so as to avoid opening my big trap and make people's life more miserable when around me. I'm certain that I'm no hero, more a victim, garnering sympathy I don't deserve.

So, please continue to pray for me, offer other means of consideration and hope for the best. Knowing it makes you feel good helps me feel better in my heart. If only my disease lied there.


I will share with you the only perspective I know, the perspective only I know. Beneath the surface I'm much more vulnerable, having been subjected to hopes and disappointments of all kinds. I've concluded exactly nothing with any surety. Everything is threaded with doubt. I'm on task, but without the necessary confidence to select a combination that will hopefully see ultimate success.

It's about faith. I'm trying to believe. I'm just not so blind as to see it. Yet.

Exposure of sorts

I remember most of my dreams, and most of them are fabrications of my work life and my failures at my jobs. The problems or compromises or miscues or outright neglect or ignorance plays over and again in my sleeping mind. Having my thoughts constantly bombarded with the urgency of the next payday compromised my projects to varying degrees. I see this perception of failure as a constant in my sleep state, all the while knowing that in reality I rarely failed at work. It is my subconscious that dwells on my failures, bringing them to the front, dismissing my successes as minimal. My core fear is that by and large I am a failure. It is my large and evil problem. It likely has its hands in my present condition. ALS has been a path to escape my fear of failing.
      My anguish extended to all aspects of my life. Financial, emotional, relationships, responsibilities, friends and family - all mechanisms of my life, all affected by my mindset.

    Today I live with the weight of my actions. Today I want to give back everything I took away from those around me and I can't. I've set the wheels in motion and I can't find the brakes. I see everything crumbling around me and I now realize that I am a piece missing from my present environment. If I could contribute my skills and emotions, I could possibly reclaim a sense of success and accomplishment I lost long ago. I can now see that maybe I am needed.

I hope this self-rationalization helps me in my dreams.

This is difficult for me.

Back home post

We're back from vacation and I'm ready for the next. Maybe New Mexico. Maybe the Tesla plant in northern California. If I were in failing health, these trips would not be possible. By most accounts, I should be home bound, have a feeding tube, be incontinent, get sponge baths, drink thickened liquid, suck down pureed food, night air volume aid, have bed sores, suffer from swollen feet, have leg flaccidity, drool uncontrollably, be considering being vented and preparing to succumb.

I'm not controlled by any of this shit. None of the above applies to me. If I drool, it is because I want to drool, usually down Amy's back as she helps me to stand or as she gets undressed or while eating kimchi or sushi.

The world needs to be a smaller place because I want to see it all.

I plan to write more. You plan to read it. I intend to become your pastime.