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