The Value Of Chaos

April 13, 2016

In reading the last few entries, I’m struck by the pollyanna’ish perspective of having this disease. So lets get real:

Their are three major types of MS. There’s relapsing-remitting (it comes and goes). Secondary progressive starts off as relapsing-remitting then becomes progressive. Progressive is a “steady systematic decline,” to borrow the words from Nine Inch Nails. Sometimes with S.P.M.S (secondary progressive ms) a development of being objectified can be noticed. An example of this is being referred to as “a lift.”

Being referred to as “a lift,” is not intended to be a disparaging comment, but it sure feels like one. I feel safe enough, and i know my P.C.A.’s minds are put at ease. But its difficult not to feel like a medical specimen with this contraption sitting in my kitchen. That’s a pretty hard look at it, isn’t it?  But in some respect, its fairly realistic. (I had a P.C.A who told me her professor was surprised i wasn’t bedridden)

The disease spans the range from being able to walk, maybe with a cane, to being stuck in bed. I’ve known both types of individuals. I remember meeting a guy who had progressive MS and having to catch his hand mid-air in order to shake his hand and tell him i was glad to meet him. When i left, I remember thinking that I had no intention of ever “going there”.  Now here I am known as a lift. Its been like a slow drip. One might be reminded of the frog sitting in a pot of simmering water and doesn’t notice the water is getting hotter and hotter. I guess what I am trying to say is that if I woke up one day 15 years ago and went from dancing to not being able to get out of bed. I’m not sure I would have handled it as well as I have. Theres a certain level of taking the path of least resistance. Accepting things the way they are.

And yet my spunkiness and acerbic perspective cannot be restricted by a lift. In some regards I take action when I can. So in spite of having a miserable disease and to go back to being pollyannaish, it could be a lot worse. I have written about how pleased I am to have long hair, eat chocolate, or to  have some control over my environment. To quote Nietzsche “One must still have chaos in oneself to be able to give birth to a dancing star.”