New Zealand 2011

New Zealand 2011

I can't believe it's been three and a half years since Rachel took me there. Hopefully she can caption all of the pictures and explain the moo cow video. Rachel, give them it all!

New Zealand: Aptly named Aoteoroa- Land of the Long White Cloud

On top of the Franz Joseph glacier via helicopter ride.

At the Wai-O-Tapu Thermal Wonderland.  Yes, the water is actually that color green.

A beautiful beach on the side of the road- yes, please!

A little Maori cultural evening.

It was a bit off the beaten path, but a pretty diversion!

Wanaka's Puzzling World

That's a lot of water flowing past. 

No shortage of waterfalls here!

That would be the same glacial water runoff I made Amy and Poppo walk through when they visited almost ten years previous. Hee hee.

 

Such a variety of views for such a small country.

We can't forget our trip to the Auckland Zoo!

 *Rachel's voice: Had some difficulties adding the moo-video, but perhaps it will show up on Facebook later...  In advance, I apologize about the poor videoing skills- I was laughing too hard to do a good job.
And I can't forget to send out a heartfelt thank you to my good friend Raed and his beautiful family for hosting and helping us in Auckland.  I may not see you often, but you are always in my heart and in my prayers.  Thank you, my friend.

It was a great trip, dadda.  I am glad you had fun.  I know I sure did!  And I'm with you- I can't believe it's been 3.5 years already!  Love you.

Memphis funny

Memphis funny.

Visiting Memphis during the International Blues Challenge while committed to a four hundred pound wheelchair and an equally committed wife and caregiver, tasked with gaining access to a dozen clubs packed to the rafters with human activity requires vast imagination and huge testicles and an even huger bladder, neither of which I possess. I'm sure Amy's bladder is larger than her symbolic balls, but not nearly as big as her heart. Of course, since she can empty it freely, unlike myself, her problem lies with my constrained biology.

Have you ever heard of a Motorman's Friend or a Stadium Pal?

Let me explain the physics to those of you who continue reading.

A (smallish) condom-like thingy is (you know) installed (you know) and a hose is attached thereupon, running it's course down my left leg to a 300ml plastic bag Velcro strapped to my calf, all assembly neatly tucked beneath my trousers and boxers. The only real difference between this and a catheter is the painful insertion of a tube designed to perforate the bladder and allow the free flow of urine without control compared to using pure willpower to pee your pants. I definitely prefer the latter, no matter how difficult.

The first night out things went smoothly and so did I. Twice. Filled it up. To anyone who saw me staring into space, eyes half closed and mouth half open just know that it is all okay.
I'd not thought that a warm sensation tracking down my thigh and pooling at my calf could be so erotically splendid.

The next night was oh so much more interesting.

Rum Boogey. Crowded behind the judges and under the stairs.

No room for Amy except on my lap. Yup. She nestled there for hours. Then it happened. I slacked my jaw, lidded my eyes at half mast, imagined myself a cow astride a flat rock and let go.

I knew something was not right and with all my effort I locked down my hydraulics, certain to have broken at least one law of Thermodynamics. The warm sensation was creeping down the channel of my ass. I knew this to be all ways not good. For an instant I rationalized that most people expected this of drooling quadriplegics.

Amy was spared the moisture. I had trouble communicating with her but managed to signal pain in my groin area and she managed to get a handful of the REAL issue.

Normally I would sit in my own pee if it meant keeping my seat. This was no exception. Later we plugged back in and I finished up. Amy steered clear of my lap.

I'm amazed at how fast urine goes cold.

Time to....

This will work out, permitting you to read it, or not, allowing you to remain clueless as to its very existence.

It is time to assess.

Let me go chronological on you.

Two years ago vs today.

Two years back I had an extensive swallow test. The test results, coupled with observances of a pair of specialists, concluded that the only way for me to take in sustenance was in the form of thickened liquid by way of a spoon. Never was I to use a straw or drink from a cup or eat any food with texture. If they could've mandated a feeding tube I'd've never escaped the hospital without a hole drilled through to my gut. On the advice of my neurologist (who never visited or called the hospital), we scheduled a gut plug (don't play with my verbiage), to be bored the following week. I opted out on the last day possible. Good thing. Because of my diabetes and my swallowing problems I refused to eat (and I use the term as loosely as the food was identified as such) or drink doctored product, and consequently relied on IV administration of fluids. If some of this doesn't make sense it was meant not to. I need a certain amount of cognitive slip in order to maintain the requisite definition of illness as prescribed by my neurologist just in case he were to travel through the worm hole to reality and fucking read the blog of somebody who can tell him exactly what is going on with us. Namely me. Unless I show up at clinic he couldn't care less about my condition, and when I do, it is an exercise in confirmation of his expertise as he checks off unimportant and speaks in the second person while I'm in the room without any interest whatsoever what goes on in my mind. I don't have a clue as to how to educate him on the core failings of his community and he hasn't a clue how far off the mark his exists.

Major segue.

Back to chronology.

Spin to now.

I don't have the tube. I'm not diabetic. I don't drink thickened liquid. I eat regular food with caution. I'm apt to use a straw. It's been a year since I last went to clinic. It's been a year since I've heard from my neurologist.

While some things are heading down hill, others give me hope. The further from the naysayers I go, the more hope dominates my thoughts and the better I feel.

It

Until my eyes work this IS it

Post script

This brief post is the result of an email from Rachel that helped me to realize my tendency toward gloom, by fact or fiction, leaving in its wake reality skewered with the barbs of tedious excession. The end presentment is melodramatic and unlit.

The truth behind it all is that despite my impression, the cruise was more fabulous than even Amy could have hoped for. As soon as we can afford it we will be on another. My posts are meant to entertain. The bathroom post was funny and totally accurate. The buoyancy post was slightly embellished and totally fun.

Tracy & Rachel in New Zealand 2011

Just so I'm clear....

Cruise four, adventures in buoyancy

Cruise four. Experiment in buoyancy.

Number one, I don't fit in a child's wheelchair.

Number two, don't hope that I might.

Number three, thanks a lot, bastards!

My electric wheelchair, at 400 pounds, plus my 165 pound carcass, was too heavy for the ramp to the transport ferry at Grand Caymans. My math must not be Common Core approved as I witnessed four 200+++ fatties holding hands aboard the bridge.

So, I was sardined into my loaner baby stroller and pushed onto the ferry. Understand my pain. It squeezed the piss out of my bladder and into my..... Thank God I'm both shy and a control freak. It would be two hours before I would even see a toilet.

We were going on an excursion whereby my limp body would lounge in a pontooned, three wheeled, off road Lazy Boy recliner, sea ready and none too comfortable as Amy tugged me to the depths of the Gulf of Mexico by a ten foot tether designed to be skewered in the sand on shore. We dodged the wave runners and ducked beneath the fishing hooks adorned with mackerel bait cast by the nearby trawler. We were too far out for any whale watching. Those lucky enough to have perfect vision might have seen us as a Tom Hanksesque dot on the horizon. The fishermen saw us, but I imagine they didn't speak English and didn't understand what they were looking at.

Sea water tastes bad. I couldn't reach with my tongue to lick my sweaty arms. Amy was frolicking along until we couldn't see the beach. Only her uncanny sense of direction could steer us back.

Along the way, I built a portable desalinization plant, spoke with Mr. Limpett and netted Flipper while snagging tuna. We had to skirt several BP oil deposits designed for wildlife control.

When we discovered landfall later that year, Amy had to keelhaul my ship to scrape barnacles. I ate some sand before I peed.

The ride back to the cruise ship was painful and uneventful except for the ruckus Amy caused when she discovered the critters that had camped out in her swimsuit. I got a kick out of that. Literally.

Okay!

Okay. I've got something.

I'm often reminded of all who are praying for me, and I often wonder exactly what they are asking for. Do they pray for me to get well, accept Christ, suffer less.......

Do those who pray for me feel it is within God's power to heal me? If he can, should he? Why? Do those who pray for me pray for my eternal soul or for my physical wellness?

I'm curious as to what people think about my chances. I'm not interested in watered down, emotionally driven condolence. I want the truth. If I can stand up to ALS, figuratively of course, I'm strong enough to hear the truth. I want to hear it.

Please understand that I'm grateful for all of your prayers. I'm in no way dismissing their effect or your sincerity. I just wonder what the prayers consist of. What is the mantra. What do you ask? What support from God am I due? Why would I deserve any special consideration?

I don't sugar coat much of anything. I never have. I've always tried to teach by example, by demonstration. I miss that. I'm often at a loss when I can't. Like now.

The real truth is in my deeds, my contribution, my ability to change people for the better. Now that my life has gone into receivership I ask you to pray for my living body. The afterlife, whatever it is or if it is, holds no interest for me. I'm in the now and I'm not patient. I'm tired of my singular modality. I want the impossible. I want it immediately and I want it completely. I've done my penance. I'm ready for everybody to pray that I walk and talk. Now. Please get on it.

Rant concluded. 

Leading by example