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

Waste of your time

How many times have I entered into a blog post without a clue as to what I was going to write? Your guess is as good as mine. All I can tell you is that this is one of them, and as of this instant I'm still clueless. Once I come up with something this written masturbation exercise will morph into something readable. So far, nothing comes to mind. Give me a minute.



Nope, nadda.



I'm filling in the blanks with blanks.


Nothing to report. Better luck next time.

It occurs to me I use the word 'paradigm' altogether too often. No more of that.

It has been confirmed. I'm losing my mind. Considering my physical condition it is apropos. 

 

Cruise three

Cruise three. Food.

Its really unfair and frustrating - unfair to you and frustrating for me - to have an ALSer report on cruise ship food quality. Most everything with texture puts me in a panic as my swallowing function is so compromised. That said, I'll try to be objective nonetheless.

The buffet was okay.

The main dining room was better.

The sushi restaurant was great but I had swallowing problems.

The steak restaurant we did not visit.

The Mexican restaurant we heard was great.

The Italian restaurant was best.

Room service was good.

Eating was once one of my favorite necessities. Now it ranks even with waking. I loved to cook. My problem is maddening.

Suffice it to say that our culinary experience was all it should have been. The service was ridiculous. My senses are just dulled. The soups were excellent.

I'm sorry for this less than imaginative post. It just ain't there today. Ask Amy about the food.

Interruption

It is infinitely more difficult to explain the complexities of living with ALS than to experience the disease, primarily because no two sufferers can be said to anguish over the same symptoms. As no two fingerprints are alike, so follows the dilemma of treatment for the anomalies inherent in Gehrig's beast. Until a common thread, if it exists, can be found that binds together a singular proclamation of a universal cure, the investigative medical community will continue to wallow in a swamp of miserable failure. Unless scientists in the laboratories dedicated to research through a pharmaceutical paradigm expand to the study and consideration of anecdotal evidence, the prognosis for their success will be identical to that of the original diagnosis and prognosis I received on March 15, 2011, sans the consequences.

Simply put, (I know, too late), the medical community is barking up a tree as it is blinded of the forest. The information is OUT THERE, not UP THERE! Idiots. I don't have time for this shit.