Landing in Primordial Earth

Words are not sufficient to describe losing all functionality in a single day, and out of the blue at that.

I have mentioned this before, but would like to give you, an upright biped, an idea of what it is like, if you have an interest in knowing. It is like nothing else on Earth, when suddenly you can’t get out of bed to use the bathroom nor can you even go get a snack or drink on your own. And if an object is out of your reach, forget it. You have to ask for help with all this and, indeed, with everything.

Symbolic of my life now, but its a good life

It’s as if you have fallen through three levels to Primordial Earth (The name Middle Earth has already been taken by Tolkien) and land in a strange place where everything is lived in a different context. Formerly, you ran around with thoughts in your head about how you were going to organize the day, where you had to be when and for who, and what you had to accomplish in the day to keep your life from not falling apart completely – bills paid, kids fed, garbage taken to the dump, animals de-wormed etc.

All that is gone. You live life now concerned about your hydration and your bowels, and a big part of the day is taking the right meds at the right time. You have a big pill box – four layers deep, not just Morning and Evening either – and this you live by. You think about your tube feeding, how long you have to be on it each day to get enough calories – and are you getting enough calories?

And then there are the nurses. Can anyone tell me why all nurses are concerned about your bowels? I think they all have a primal complex about these things that only Freud can explain. I know several who were positively excited that my pee was a light color. I really don’t get them.

Along these lines, I’ve heard the poop talk so much I’m determined to have the sleekest, best bowels in all of Central New York. I actually went shopping yesterday and the most important thing on my list was prune juice. You know life is going downhill when you highly value prune juice.

It’s a world of small frustrations not known to normal, upright mortals. If a candy in a nice wrapper falls on the floor, I am dead. I can look at the candy, and it can look and me, and we can go back and forth for hours but I can’t do anything to get it. If something blocks my wheelchair in the hallway, I’m stuck unless someone helps me.  I can see a blanket across the room but can’t get it.

(Don’t get me wrong. My family is top notch and takes very good care of me. It’s just that these are obstacles we face.)

It is a world where you don’t accomplish much in the day except staying alive. You are on a feeding tube 14 hours a day. (My weight is 132; in the depths of Chemo in 2007 I was 137. When I sit on a hard surface, I can feel the bones in my butt. Listen up, ladies: be thankful that you have padding on your butt. It’s a good thing.)

Its a world where you are taken out of the world.  There are no schedules, and you don’t have to be anyplace.  Ever play croquet, and you put your ball up to another and Wham, you send the other fellow’s poor ball flying?  It’s as if I’ve been sent with a big WHAM right out of the yard – indeed, deep into the woods, lost.  Just sent.

It’s a world where getting outside with the trees and huge, blue Fall sky is like dropping acid. And if you get a visitor, life is really good. If someone walks you down the road, you feel as if you have just crossed off the most important task on the To Do list that you had in your previous life. Riding in a car is epic.

It’s a world of staying out of pain.  Pain is always bad, and you have to stay out ahead of it and manage your meds with some finesse.  In the midst of my brain tumor, I got shingles from another tumor in my left side  that activated the dormant virus in my body.  All this was very poor planning on my part.

It’s a good life, though. Don’t get me wrong. And no feeling sorry for me. I am a king. I have all the friends in the world and a fantastic wife and family. I wouldn’t have it any other way (well, I would like to walk to the bathroom by myself, but I’m content with my lot in life – very content.)

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