NZ Part Four (Quad)

These recent posts have to be the laziest efforts I've put forth since my first entry back in July. It's not that I have any lack of material to write about so much as it is a relief for me to share a great positive amid a plethora of negatives. I seem to want to dwell on this segue to New Zealand and glean all I can from my my experience. I want to keep it as fresh as I can before it slips too far into the past. Somehow, keeping it near in a figurative sense pushes my future farther away, rendering it less clear, and I like it that way. Call it living in the past if you will, I prefer it to the alternative.

Trio, this time with pics

More to come......................................................

New Zealand Pics- part trio

Still doesn't compare to being there............................ oops, forgot to upload pics

New Zealand Pics- part deux

On and on................

A Pictorial Synopsis of New Zealand, Part One

While a thousand pictures, unedited or photoshopped, are available in all their glory, even with my ugly mug adorning many, our twenty or so videos need work before we can upload them for your viewing pleasure. While I promise not to bore you with all one thousand snapshots, I do plan to bore you with a dozen or two. This is not the final word on New Zealand. I am in the process of writing a post, soon to be available, about much of New Zealand that will provide compelling documentation as to why every human being on earth (not already living there) should visit at least once. I could provide a travel guide of my own creation. Meanwhile, enjoy the pics.

Home at last

We are home, after a seamless connection of Planes, Trains (not) and Automobiles (bus), interwoven with eleven hours of waiting around. There is a decided difference between the effects of anticipation beginning a vacation and the effect created upon the return home, the latter being the less fun of the two experiences. Although the party's over when we get home, I must admit that recovering from jet lag in my own bed with my wife certainly has its rewards. Don't read into this anything extra curricular. My job is to write about my experiences and yours is to read the lines- not between them. I know this is a wink and ha ha moment. It too shall pass. Suffice it to say I cannot claim to have been "dead" tired. Such a statement is much too dark for my situation. I was, however (British term) bleeding tired, which cannot be considered dark as ALS doesn't promote bleeding. That in mind, if I thought blood letting would help to cure me, I would refrain from any United Kingdom colloquialism referring to the red stuff and get to work on my arteries.
I cannot fail to inform the world that today is my daughter's 30Th birthday. She hijacked all responsibilities from me for the two weeks in New Zealand and helped me to discover the wonder of passive passenger, releasing me of the Alpha Dog stress of running the show. There is an amazing amount of relief in being clueless. After a while, I quit asking "where are we going" and simply stared out the window, letting my anxiety at my ignorance morph into cathartic bliss. This was my first experience in relinquishing control and I must admit it to have been enlightening and relaxing. It worked with Rachel calling the shots- I'm not so sure I could have yielded my "control" to Jeffrey Dahmer. Altogether, a great, great trip.

Sometimes I feel like "Dexter" (Showtime series), though my "dark passenger" is ALS. As in Dexter, I try to shed my piggyback rider, yet he creeps forth stealthily and subtly and relentlessly. He (I refer to ALS as he because I cannot label it a she- to me this is a masculine disease in all its components) reminds me daily through myriad minuscule messages (I now refer to this as MMM, my own concoction, which I shall submit to the FDA as a medical term), that I carry him, always. He has his claws in me. Each day, he nibbles a little functionality from me, his mouth is locked upon my neck and his spit is glutamate. Every day I hope he either gets full or develops dry mouth. What I wouldn't give for a can of spiritual alum.

To update on my physical condition I must be careful. Careful not to appear too negative, not to cause people to worry unnecessarily, to temper my words with lightheartedness, sarcasm and plain old "crossing the line" statements that make people run away screaming. If you are likely to find yourself the screaming type, please run until you're comfortable. I don't want anyone to suffer through my suffering. It's okay to care from a distance. Maybe more should try it. For others, I appreciate their candor, and if to a few, I am a curiosity, then learn all you can. Ask me anything and you will get the truth. I will not cower at any inquiry. Possibly, if the right person asks the right question and receives the right answer, he may return with a cure. SO..........ask. Or focus from a distance. Throw energy at me like fireballs.
Somewhat briefly, I now need a wheeled device for any extended travel. I can enter and exit a car on my own- so far. While in New Zealand, Rachel pushed me around as necessary. It wasn't so bad there because I didn't know anybody. Here, home, is a different story altogether. As an example, yesterday Rachel and I went to Hyvee for a few things. I don't yet have a wheelchair (when I get one, I have little function in my left hand and arm, so any self propulsion will be circular, much like my reasoning of late, so I won't get far without a pusher), so I got behind the handles of one of those electric scooters with the big basket on front (you know, the ones usually borrowed by "plus size" riders), and began shopping, full of trepidation at the potential sight of a "familiar". I saw one, who looked so dismayed as to appear in shock, saying hi, then disappearing from my sight at light speed. I suppose those who have seen me "walkin' and talkin'" now rollin' and talkin' are victims of their visions rather than masters of their imaginations. Seeing my disability as it progresses is most assuredly more traumatic than reading about it. Sorry.
Just as a clarification, I don't drool (much), I bear no deformity (though my left is coming to resemble "the claw" in Liar, Liar), and I still babble incoherently. I can get up from a seat most times, shake hands, smile, frown, laugh and cry. I am still me. This will not change. I will not duplicate Marty's fate (Flowers For Algernon). While I am devolving toward the level of dependency of a new born, I'm relatively certain I will continue to remain smarter than the day I was born. Until the next epiphany.
Oh- e bomb Rachel about her birthday- rachelboettcher@gmail.com

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.