The relevance of this blog comes into question more often as time goes by...... At least that's my opinion. More often, that is, in my mind. The original purpose of this attempt at identifying the user perspective of ALS has been muddied by the endurance of both me and the thread. How do I end it if there is no closure? Perpetuity is ungainly and bloated, yet it may be preferable to an abrupt cessation of all communication on the subject. I just don't know.
My state of mind dictates what I write. If the senses are jumbled, my mind follows suit. The paradox here is confusing, as all paradoxes should be. Lending my mind to speak on these pages only encourages me to examine my condition, which is horrible to the average man yet queerly curious to me on the occasions I'm not the average man. These occasions see me as a separation of physical and mental beings, looking at one another as strangers, vaguely disinterested, almost aloof. My mind's eye wants little to do with a broken down carcass of human frailty possessing nary a function other than a reminder of ability long gone.
The body does what the mind tells it to do. Sort of. I can't recall telling my body to fall apart. I distinctly remember, on many occasions, telling my body to knock that shit off. See me now. The truth is out there, yet nobody seems to know what the heck it is. There is something here I'm missing (other than the obvious).
Let's talk about setbacks. Okay, let's not. No use in beating the horse to death on the way to the glue factory.
Alright. Since my feeding tube surgery I've been consuming a sludge the color of baby shit and the consistency of pureed baby shit called Osmolite 1.5. Words cannot describe the feeling of this runny snotlike substance splashing against my stomach wall and flowing in runnels as gravity draws it toward my intestines where it apparently slows and pegs out of reach for manual intervention. For a guy who can't move it comes as a surprise that the nutritionist would recommend a product that causes constipation. Because I'm not an idiot it was my duty to question the wisdom of the eighteen year old fledgling expert when she didn't know what was in the can until she read the label, but, as usual I deferred to her expertise on the matter even though she was a deer in the headlights when I asked her what percentage of the carbs contained within the can were complex. As a result of my trust in higher education and my failure to intercede on my own behalf I find myself awash with prune juice, warm, apple juice, water by the gallon......
There is a lesson to be learned here : Don't expect to get the best care from those who read from the book of "Western Medicine School of Conventional Wisdom" that has written your death sentence in their original diagnosis. Case in point : I bled like a stuck pig until someone realized that I was on three forms of blood thinners one day after surgery as per doctor's orders. Leave it to me to leave it to them. I need to self medicate. If only I could roll a joint.
On the good side, I've got my Amy. Now to convince myself that the mind is enough to live on. So far I'm not.
My state of mind dictates what I write. If the senses are jumbled, my mind follows suit. The paradox here is confusing, as all paradoxes should be. Lending my mind to speak on these pages only encourages me to examine my condition, which is horrible to the average man yet queerly curious to me on the occasions I'm not the average man. These occasions see me as a separation of physical and mental beings, looking at one another as strangers, vaguely disinterested, almost aloof. My mind's eye wants little to do with a broken down carcass of human frailty possessing nary a function other than a reminder of ability long gone.
The body does what the mind tells it to do. Sort of. I can't recall telling my body to fall apart. I distinctly remember, on many occasions, telling my body to knock that shit off. See me now. The truth is out there, yet nobody seems to know what the heck it is. There is something here I'm missing (other than the obvious).
Let's talk about setbacks. Okay, let's not. No use in beating the horse to death on the way to the glue factory.
Alright. Since my feeding tube surgery I've been consuming a sludge the color of baby shit and the consistency of pureed baby shit called Osmolite 1.5. Words cannot describe the feeling of this runny snotlike substance splashing against my stomach wall and flowing in runnels as gravity draws it toward my intestines where it apparently slows and pegs out of reach for manual intervention. For a guy who can't move it comes as a surprise that the nutritionist would recommend a product that causes constipation. Because I'm not an idiot it was my duty to question the wisdom of the eighteen year old fledgling expert when she didn't know what was in the can until she read the label, but, as usual I deferred to her expertise on the matter even though she was a deer in the headlights when I asked her what percentage of the carbs contained within the can were complex. As a result of my trust in higher education and my failure to intercede on my own behalf I find myself awash with prune juice, warm, apple juice, water by the gallon......
There is a lesson to be learned here : Don't expect to get the best care from those who read from the book of "Western Medicine School of Conventional Wisdom" that has written your death sentence in their original diagnosis. Case in point : I bled like a stuck pig until someone realized that I was on three forms of blood thinners one day after surgery as per doctor's orders. Leave it to me to leave it to them. I need to self medicate. If only I could roll a joint.
On the good side, I've got my Amy. Now to convince myself that the mind is enough to live on. So far I'm not.
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