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.