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Saturday, October 1, 2011

Coming home soon..........


We are boarding in Auckland tomorrow (which is Sunday for you, Monday for us), travel and layover for 33 hours, and arrive in Peoria Monday night at 10:40pm. Don't ask how this works- it took us two calender days to get here and seven and one half hours to get home if you follow the International Date Line interruption of reality. Whatever your take, we will be home soon. Once I get up to speed in Peoria, I plan to write a long, rambling, introspective, esoteric view, from my minds eye, of New Zealand. Expect some harsh realities concerning life, health, attitude and insights into choices made and those to be made, emphasising what I have found to be an advantage in simplicity. I hope to implement such simplicity when I get home. A lot can be learned by travelling abroad; the important thing is to search for your education, requiring a mindset other than that of a tourist.
As for my health, it continues to decline. The slope is not steep, but constant. Characteristic changes are subtle, yet obvious. In the two weeks here I have experienced a degradation in my gait. Before, I could walk, albeit strangely, long distances with little fatigue, however, now I tire very quickly. I know why. As my motor neurons are drowned by glutamate, their death throes pump radical signals to the corresponding muscle cells, causing a negative cacophony of information, resulting in muscle cell overload and poor reaction timing. As damage progresses, my ability to walk erodes as I cannot voluntarily direct the attention of these cells when they're busy fielding so much fowl interference. My legs can't hear what I'm saying. Soon my muscles will be rendered deaf, and after that, dead. The fasciculations in my legs are more violent than in my arms, I assume due to their size, but do not occur constantly. I can rev them up if I stretch hard, so I try not to get them riled too often. Unfortunately, I am aware that the process of degeneration continues without provocation.
A probable factor in the rate of decline I am experiencing relates to my auto immune system dynamics. If I get sick, my body reacts to the virus by taking on the brunt in one day, whereby I am very seriously ill, then attacking the problem with a vengeance and knocking it out by the next. Where most people remain sick for a week or longer, I rarely stay sick for more than 24 hours. This system has worked my whole life- until now. ALS is not the flu, or a cut or abrasion. ALS is posing a problem within me that may be untenable. While I will never give up, I am dismayed at the progression I am experiencing. I am now a sloth. I move like lava. If a fire breaks out in a theater, I'm dinner. If I thought I could take a bullet for someone, those days are gone. If you're in any kind of a hurry, please allow me ten minutes to pull up my underwear and wriggle into my Levis. I have lost some range of motion in my left arm and cannot push too hard without a Percoset nearby. Little things. I cannot straighten the fingers of my left hand, even with force. My left wrist, I fear, is sprained for life. I lack any muscle strength to help it heal.
My natural balance on my feet is for shit. I need to consciously correct all the time. Stairs are posing more challenges each week.
I thought of making a list of what I can no longer do- I actually started such a list- but it became too long and depressing, so I deleted it. Instead, I shall assemble a list consisting of that which I can still do, then delete each action as it becomes impossible. This system seems much more efficient, if no less depressing. I am aware I have to grin and bear all this, and I will. I said months ago that I was a hard nut to crack, and I still am, but those pliers are really putting the pressure on, no matter how hard my head is.
The most difficult part of this stage of my game is psychological. I have my brain, I'm told ALS does not effect, and they are wrong. I meditate, or self hypnotize every single day. It helps me to cope. I have yet to bridge the gap in communication between consciousness and my sub conscious. Though I try, talking to myself yields only a one sided conversation. I've systematically lowered my stress, my need to control everything, my worries and responsibilities, but I fear these accomplishments simply serve to relax me, not to cure me. That elusive ability has yet to manifest itself. Meanwhile, I must prepare to deal with a decline in my ability to preserve my dignity, my privacy and my sanity. If a cure lurks out there, I wish it would pounce.
I know this post may be hard to read, but since you're reading this sentence, you've taken it on the chin and there's no unringing the bell, but I warned you, real is real. Sorry about the sucker punch.

3 comments:

  1. I am with you every step of the way whether I am there with you or 10,000 miles away.
    I love you.

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  2. sorry to say,but you still 'hit hard'! we will talk soon!

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  3. Dennis, I can still hit hard, providing it is on the downward stroke, using gravity to assist great mass, as I fall forward and down.

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