Updater

When I'm on, I'm on. These days I'm off. Literally off. Physically and mentally off. Until recently I've been able to set aside both inconveniences and write.

On July 7th I have an appointment with a gastro guy to discuss the probability of a feeding tube to be inserted through my flesh and into my stomach. Five minutes ago I found out that I've an appointment on Friday with a renowned pulmonary specialist. If things go right, this guy will help with my breathing and direct me to his network of specialists who, like him, work exclusively with neurological disorders that affect breathing and digestion. My neurologist, on Friday the 5th at clinic, recommended this guy and warned that the doctor was looking to retire and may hand me off to one of his newbys, who are competent but not him. The main guy only sees patients Tuesdays and Thursdays from 1 to 5, but for some miracle is willing to see me this Friday at 10 am. If Dr. Heitzman, my neurologist, had anything to do with this, my assessment of him will change from lukewarm to piping hot. In fact, I'm already heating up in his favor, and so is Amy. He actually acknowledges much of what is the truth about ALS outside of typical medical dogmatic response. It is refreshing to know that my doctor sees his patients as other than statistical lab rats.

So, if I'm successful in my interview on Friday I may be able to breathe better and gain weight in the near future. At present I'm hovering around 140, fifty pounds off my ideal and sixty pounds off my previous walking around weight. Also eighty five pounds off my plumpness in November of 2011 after following my Peoria ALS nutritionist's advice to pack on the pounds with a high carb diet. Idiot.

Will I have a breathing apparatus? Likely. Will it be a vent? Not at the present time. Will I have a feeding tube? Only if I survive the surgery. Will I have this figured out before my trip to Peoria? Yes.

Thanks to you and your patience.

Crap

Breathing and eating. Two of the things I'm likely to need in my future. By artificial means. No more fun than a feeding tube and air assistance. Shit.

ER adventures

Three visits to the ER in one month and feeling just as shitty after each visit has impressed upon me that testing for anomalies has nothing to do with solving my problem any more than stabbing me quickly will shorten the duration of my pain. My veins are diminished, thus finding them is problematic. More for me than the nurses, certainly. Add the North Dallas Forty Nick Nolte knee injection technique employed by the respiration Witch as she plunged a horse needle at a right angle three quarters of an inch deep directly into the inside of my wrist. This form of brutality extended far beyond the invasive nature of bringing a quart of blood from my collapsed veins ten minutes previous. This crap yielded what? If I didn't scream it was not for lack of trying!

The reason for this most recent ER excursion was terrifying for all. I suddenly became severely agitated and dizzy. I might even have lost cognitive ability during the episode. Amy grabbed the blood o2 and heart rate monitor and put it on my finger. While my oxygen was okay, my heart rate was down 45 beats per minute from normal. I couldn't breathe and my legs locked out. My head lolled to the left and the room spun. I was totally out of it.

By the time we made it to the hospital my heart rate had returned to normal but the shakes and spasms continued. This just has to stop, please. It's making Amy a nervous wreck. It appears that this episode is quite common. A reset of sorts. Well, f**k that!

Something to ponder

With all that is happening, and with all that is slated to transpire over the next few months, I've been largely absent from the digs of my blog. Let me encapsulate events as they have and will unfold. Mind the insertions of my viewpoint from time to time.

Going back, although I'm certainly brain damaged from a multitude of life's mishaps, I'm inclined to believe that by and large we are all a product of our experiences, not to be judged as good or bad so much as more or less defining in the development of our personalities. My youth was in many ways more colorful than tragic; my father's attempted suicide was perhaps black on the spectrum, whereas the unusual opportunities that my unadulterated, unsupervised independence brought me more than compensated for the dark times with a brilliant infusion of color manifested as bright white. If you look way back in my blog posts you will discover some of what my youth experiences brought out of me. I'm not a microcosm of these references any more than I'm a product of my history, rather I'm an extension of the whole. Consider that your past is filled with parts that can assemble in a million different ways, but can only assemble into a collection of the parts. Now consider that our minds are capable of much more than assembly, much more complex than the collection of memories, much more intuitive than we give credit, and the end product is nothing less than a spectacular result from a bag full of memory bytes, corrupted and confused with age and dimmed view. I'm not a product of my youth, but a product of its interpretation. if you see this as convoluted or obscure, I'm sure you are not alone. After reading this, even I am confused with what the author, (me), was trying to convey, but further examination exposes that he, (me), makes perfect sense. If memory serves me correctly- and it does- the experiences of my past also serve me, and as the servee, I can implement them as needed. I always have a choice. I choose the good times.

So I ran amok with a segue. So what? It is my blog and I can screw it up if I want. It makes for an interesting tomorrow. I need all those I can get. To be continued...........

Sorry.

You are getting fewer posts because I'm less often able to sustain any vigil on a subject. Facebook is easier because it only requires snippets of witticisms. I'll try harder to stay on task in the future.

Appreciation

How in the world do I express my appreciation for all of those who continue to read my blog despite my ramblings in apparent perpetuity? I'm indebted to people, many who don't know me and have never seen me in the flesh. You all have slogged through hundreds of my posts, for sure. If not for this Loyalty, I would have stopped long ago. Don't feel the obligation to respond to any of my rants; simply continue to read and realize that you are instrumental in my survival. Just know that I love you all even if I don't show up at your family gatherings.

Story shop

After several days of breathing difficulty singularly book-ended with severe gut ache, two consecutive visits to the hospital with no definitive conclusion other than determining that I have sludge in my gallbladder and a stone in my stage left kidney, I've come to my own conclusion that we, Amy and I, are on our own on this journey whether we like it or not.

So much for my current status.

Let me take you on a trip via Mr Peabody's "Wayback Machine", appropriate as an apparatus as it is contemporary with the time signature of our destination. I'm putting the controls to 1965. In an instant we are there.


The year my dad almost succeeded at committing suicide.


You are wondering why the hell I would ever post a thing like this to my blog. Truth is, I spoke of it a couple years ago in this very blog, long before many of you began reading. Then why now?

Well, as it becomes apparent with the progression of my disease that the mishandling of past traumatic experiences in all likelihood contributes to my ability to function with any kind of stress today. This exploration may actually mend my mind enough to escape (poor choice of word, live with it) the destructive fight or flight mode locked in perpetual "on" position. In a session long before we moved to Dallas, Amy hypnotized me and I saw (in my mind's eye) an apparatus, a large fifties era control panel replete with knobs, toggles, switches and gauges. I believe this was a representation of the working part of my brain. I was unable to touch the panel and clueless as to how to correct the error that put me on my current path. You ask me what does this have to do with resetting my historical record? I dunno. I'm just trying to change my mindset here. If I'm to do that, it makes sense to exhale the dirty scoundrels of pent up emotions that over the years have carved me in to the staunch denier I have become. Closure can only be brought about by opening doors to my past. The reason I'm sharing this is simple : power in speaking out. If I contain this, it has won. Please excuse the collateral damage.

First, my mom died a couple of years ago.
Also, my dad is alive in a Woodstock nursing home.

I am seven years old. We live in a modest three bedroom house that my dad built two years earlier. I remember everything about that house. The layout was identical to a model designed by Ladd Construction, the company my dad worked for. It's no secret that dad has the opinion that carpenter work is beneath him. He makes it clear that a nail pounder claims a low rung on the ladder of success.

Let me switch from present to past tense.

I was seven years old when my dad nailed the garage door shut, started the car, crawled beneath it and sucked fumes until me and mom dragged him out the service door.

As I said, my dad saw his profession as lowly. In his frustration, he became disillusioned and depressed enough to make a feeble, yet potentially successful attempt to take his own life. I recognized it then, at seven. I should have demanded counseling, but what was available for a second grader of a lowly carpenter family in 1965? Jack shit. Identical today for lowly carpenter family with dad who has ALS.

I can still remember the sixteen penny nail driven through the overhead garage door, nose high, at an angle into the frame, not set flush as if somewhere in my dad's mind he was thinking of removing it when the business at hand was completed. The bluish purple of the nail head, reflected from the single bulb of the ceiling keyless porcelain is still ingrained in my memory.

I remember a booze bottle under the car. It was planted there. Dad wasn't a home drinker. Besides, how do you drink anything while under a car? I don't believe for one second dad needed alcohol to kill himself.

I don't remember what kind of car it was.

The Ambulance took him away.

A limp body is heavy for a seven year old and his mom.

I never talked to anybody about it.

I'm sure dad got brain damage that day, as did I.