Tuesday, 28 October 2014

Jabberwocky, Sort Of

"The time has come," the Walrus said, To talk of many things:"
"Of shoes--and ships--and sealing-wax-- Of cabbages--and kings..." Lewis Carroll

I think of these lines from Lewis Carroll's "The Walrus and the Carpenter" often, whenever I think about my present and my future with ALS. Charles Lutwidge Dodgson, the man behind the name "Lewis Carroll" was a brilliant man with many talents. Among other things he was a  mathematician, logician, Anglican deacon and, in the early days of a now ubiquitous art form, a photographer. In other words, he was a creative man who loved words. Me too.

The reason I think of these lines, however, has nothing to do with Jabberwocky. It is my own life that has this "through the looking glass" feel to it. When I contemplate my future, that contemplation goes only as far as the next few months. When I think of the many things in my life, I am continually struck by the inanity of it, where the upside is down and the downside is up. I don't think much about ALS killing me; I think a lot about how I live with ALS. I am broke, yet I am wealthy. I am alone, yet I am surrounded by friends and family. I am sad, yet I am happy. I have so many things to consider, yet I don't.

I just made breakfast, only it was noon. I look at the food I eat, considering the calorie count, not to keep it low but to keep it high. If I make something unhealthy, I should probably make more of it. My doctor tells me there is no such thing as a bad calorie with ALS. So when I make something as unhealthy as Kraft Dinner, I add extra butter and even a bit of mayonnaise to make it higher in calories. I also add an egg, some wieners and perhaps a bit of onion to make it even better, or worse. Yet the mere effort of making something good for me to eat leaves me tired enough that I don't want to eat it.

Just a few days ago I was on the open Pacific fishing for marlin. Today I am wondering if making a meal is worth the effort, if there is something else I can eat instead of what I am cooking. This morning I woke up shaking, almost unable to hold a glass of water. After the weekend I am planning on driving down to Kelowna and then over to the coast. These are the oddities of my life, that I can be completely weakened in one area and yet completely functional and active in another.

It is both sides of the looking glass, this space I am in. My arms are fasiculating right now, muscles wobbling like mad. Yet I just finished chopping onions and eggs. My belly fat keeps me alive, my belly fat drives the atherosclerosis that wants to kill me. I am perpetually exhausted yet rarely am I really tired. I am broke but I just went to Hawaii. There are so many things in my life that just seem backwards, odd, a misshapen reflection. And there are many things to talk about.

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