This may be my final blog entry; not to be overly melodramatic, but I had a run in with some pesky muscles that just decided yesterday to not work anymore. Whatever fluids I was still able to choke down, seemed to have a particular affinity for my esophagus, which makes things interesting for I have limited lung capacity to call upon to eject these fluids up and over to the appropriate down pipe. So that generally means a couple hours of barely breathing (more like gasping for air )and since it was taking 35 to 45 minutes to toss ...
<< MORE >>God!
The mere mention of you is enough to bring me to tears. Anyway, as You well know, I have been having difficulty of late, mostly with the body doing the whole “consuming itself” thing which is at once fascinating and at the same time, kind of scary to experience in this context. I have to marvel that I ever considered a 40 day fast as some huge insurmountable event beyond my ability to endure. What foolish things I once concerned myself with. I bet you probably hear that a lot more than you want to. Anyway, I am ...
<< MORE >>What does it feel like to be disabled; handicapped; or as our politically correct society would say, mobility impaired? That has been the question in my brains of late.
But before I get into this, I want to express, once again, my gratitude for the constant stream of encouragement that you have taken the time to write; I understand how daunting it is to drop all the personal apprehensions and throw down honest thoughts for all to read and, perhaps misunderstand or at least interpret for themselves.
I have tried to be honest with each thought or idea ...
<< MORE >>This short entry is for you, yes the ones reading my vignettes.
Oh, I don’t know who you are, unless you are one of these who leaves a reminder to me that you’ve been here and have had a response to the words that I have struggled to assemble into some semblance of order.
It’s funny, I sometimes agonize over the words like a child trying to fit a shape into a toy; twisting and turning the words; trying different combinations until, like the small plastic shape, it pops effortlessly into the slot that was specifically designed for ...
<< MORE >>Food was one of the last accessible pleasures plucked from my increasingly barren vine of human experience. I can understand why people who are facing the convulsive agony that is ALS would be inclined to undergo surgery to handle food and drink; with my body in a state of deplorable decay, I stare down each cup of liquid with a concentrated vigor heretofore reserved for only the most demanding of enterprises; each one a villain to be fought with emphatic earnestness; each victory enthusiastically celebrated, each defeat silently set aside and forgotten.
With the struggle to drink a simple ...
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It’s 5:10 am and I am awake; if you can call this dizzy half baked state awake. I’ve lost count of the mornings I have lain semiconscious just letting the minutes dribble away while my carcass prods me with pains I cannot alleviate, itches so intensely fierce my eyes water and liquids I cannot swallow. The cruel irony of being so hyper sensitive while being a spectator in this body increases daily. I was trying to remember my last meal; it’s been quite some time; probably two months since I actually ate something solid. As I recall, it was ...
<< MORE >>One of the statements that absolutely chaps me is when people say that death is the ultimate healing. I guess I have heard lots of different points of view during the process of the dilapidation of my body this year. Death is healing? By definition isn’t it the exact opposite? That’s like saying that birth is part of gestation. No, it’s the end of it.
I guess the underlying philosophical point that they are trying to make is something like we live in fallen bodies and that the bodies we have to look forward to on resurrection are going to ...
<< MORE >>I recently watched an old episode of House that was about ALS; it’s a strange thing to have an incurable diseases and hear it spoken about with such candor, especially on TV. It was the only show I had ever seen that tackled this particular sentence until yesterday when my favorite show, Scrubs did an episode that touched on ALS. By the way, I thought it was really well presented, however they don't tell you the whole story (obviously) just the suicide perspective which I stared into the face of at great length. For me it came down to the ...
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