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Sunday, December 18, 2011

Fear

I've rarely mentioned fear. Put yourself in my shoes and ask yourself if fear would be an emotion to deal with, and if so, what would you be afraid of? Pain? Increasing disability? Creeping paralysis? The loss of privacy, of dignity? Frequent muscle cramping, spasms? Losing the ability to swallow without aspirating food or liquid into the lungs? Requiring access through your gut into your stomach (something like the gas tank filler on your car), a shorter route food depository? A one inch tube sewn into your trachea to enable you to breathe? Losing the ability to speak due to an afflicted tongue, a paralyzed palate? Core weakness requiring a back and neck brace to remain upright in a specialized wheeled device? Massive loss of musculature, hyper metabolic digestion? Lowered auto  immune system? Complete quadriplegia? Infection? Blood clots? Pneumonia? Death? Judgement day? Eternal nonexistence? 

You can hypothesise, but you cannot know. I couldn't tell you how you might consider fear any more than you can understand mine. 

My fears? To my core, none of the above. I consider it seriously peculiar that fear is not one of the emotions I must deal with and rail against. Don't get me wrong, I am cautious when I stumble near the edge- after all, I don't want to crack my skull, I don't want to complicate my already complicated life- so I remain wary. 

I follow no process to ward off fear, I am simply not afraid. I figure if this stuff creeps up and grabs me, even day by day, I will be able to adjust to it all, day by day, essentially fielding the volleys as they come. As horrendous as ALS is, the disease gives me time to deal with its symptoms. If everything were thrust upon me at once, my coping methods would be overrun and I'd likely panic. 

Most interestingly, I do not fear death. I do not believe I will be judged and placed based upon the kind of life I have led. I'm not looking to discover a gold ring over my head or feathery wings behind me, or for that matter, horns or pitch fork (how did a farm implement become a tool of hell?). For me, I don't know what happens when I die, and furthermore, I don't care. With the life I've had, I don't need to think I'll be going to a better place simply because I can't imagine being away from my friends and family would be more fun. So dying is a downer, I don't expect to do so, and living will be the option I take as long as it's presented to me. Living is a sure thing. Dying, I know, is also a sure thing, but one that needs to be put on top of the procrastination basket. After I'm dead, nothing is a sure thing. I  suppose, lacking the fear of the unknown, seeing death as an unknown gives me no basis to be afraid.

From all I've read, ALS simply constricts people like me, hoping to squeeze the life out. I can play it a couple of ways- I can tighten my gut and fight or I can exhale and slip from its grasp. I'm beginning to lean toward the latter.

1 comment:

  1. on pitchforks and religion. As a pre-schooler I loved the hymn "Hold the Fort," which went (I think), "Hold the Fort for I am coming, Jesus whispers still, Weigh the anchor back to heaven, by thy grace we will." I thought the lyrics were "Hold the FORK for I am coming..." A fork made sense. I had no idea what a Fort was, but I'd seen pictures of Roman Gladiators (I thought they were soldiers) holding Tridents--giant forks. Romans, being in the Bible, were by definition, religious figures. The next section was more difficult. I thought it went, "Wave the anchor back to heaven, Bye Bye Grace, we will." That made no sense, because while a Trident is a good weapon, an anchor is heavy and why the gladiator would wave it was beyond me. As for the last part, who the heck was this Grace we were waving at? well... religion. It's a mystery. (The Christian image of Devil's forks do come from the Trident, though).

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