February 16, 2011

This will probably give you a headache

Segev has improved, though he seems caught in a rough spot of vomiting due to lack of coordination in his breathing/swallowing. The viral pneumonnia is running its course, with less wheezing and phlegm, good saturation.
When you try to find the meaning in everything, you come to believe that there is nothing mundane. A rock is not a rock but rather it has an intrinsic value of the forces of nature that shaped it, the many uses it can be put to, the symbolism that endows cultural values.
When you are driving, to wherever it is you are going and you automatically ask yourself, 'where am I going in life', you are thinking like a philosopher. Philosophy tries to describe the value in all things, the conditions by which we can see meaning in anything, connecting us to the intricate mechanisms of nature, through a framework of understanding.
It is strange then that this describing stands in contrast to pragmatism but as nature would have it, always thinking in circular motion, understanding and action can come together, existing simultaneously in what some call the zen state, the Krishnamurti moment, where conflict can no longer abide.

In taking care of Segev my frustration comes on the one hand from not being able to do more for him but defining what is 'doing more' is complex. There are always the physical aspects, bodily needs of health but especially the consuming issue of dignity which strives to preserve the ability of a person to live within the assertion of their Will.

I have done what I can do for my son, but life is much larger than just this. Each of us have responsibilities that extend beyond our idealized margins. It has not escaped my attention that somewhere in the back of my mind I have always wished to create a sterile existence for my son, one where the amount of suffering is controlled and subject to clearly understood mechanics.

There are many things which I lament not having done with Segev. I am not referring to teaching him how to ride a bicycle or watching him laugh as he shouts, 'push me higher, daddy, push me higher' on a swing. When the lake has dried up it hardly serves us to hunker for the gaiety of splashing about in the water.  

The things I haven't done, what I have left out almost in its entirety, are the very simple things that would have filled Segev's life with more meaning than the quiet drifting off of thought or sensation that is wont to happen when he is not disturbed by discomfort or pain and yet let alone without distraction.

Although I cannot recall how long it took me to teach him to stick his tongue out it was not an effort that saw me impatient from repetition. The point was of course not to teach him to stick his tongue out, although he may get some satisfaction from discovering, yes discovering, that he has a tongue and that he can move it, however rarely. 
The point has always been to see the measure of understanding which he has which then allows you to build, slowly, his world, filled with small gestures, increased awareness perhaps or increased methods of communication. More interaction which opens the door to more experiences which can give him satisfaction as frustration is clearly not something he is equipped with. 

Without the myriad distractions and considerations that a regular person has, Segev's experiences are absolutely pure in connection. Knowing this perhaps has made me hesitant to explore more avenues of discovery for him. But I also enjoy using the excuse that his condition requires constant attending to. Relieving discomfort or pain and slowing down his decline are without a doubt an obsession for me.  
Finding a balance between his physical plight and the manifestation of dignity, true understanding folding itself into action in the same moment in space and time, feels very precarious to me. 

Looking for meaning in all things and how they necessarily relate to one another? And yet the answer must be right in front of me. 
Isn't Segev the answer to the most important question I could ever ask myself? How do I fit in is that question, isn't it? And he speaks to me with his simplicity, clear as crystal. This peeling away of the proverbial layers of the onion ends with being left with nothing. You remove layers, finding meaning, until you find your cute little logic has enveloped itself and it's time to start all over. But before you ever started peeling the layers away it was already an onion. You'll never get a better understanding than that; that a thing is what it is.
Segev's nature is to be who he is. I cannot take anything away from that. Though more importantly if I believe my own words of indomitable spirit, neither can anyone else. So why continue the struggle? Why fight on, besides the obvious, that we are programmed to do so?

Again I come back to the frustration, because you can realize what your weaknesses are but know that you are not able to compensate entirely for them because that's how you were made, flesh and blood, not some ethereal spirit.
The sterile life I mentioned earlier is, of course, an illusion. The concept of order is subject to perception. The best thing we can do is conscientiously acknowledge our nature, but more importantly, how we are part of a mechanism of nature where each part has its role to play.
And Segev's role? No grand prince of evolution. No monarch of a lost tribe of sentient beings. Just a little boy, squashed like a bug by accident, through no fault of his, adding a particular tone, a masterful brushstroke, to this tapestry.


  1. "But before you ever started peeling the layers away it was already an onion. You'll never get a better understanding than that; that a thing is what it is." Perfection, sir.

  2. You are so excellent in caring and the same one reads in your words. Sure Zegeve is aware of this, even so no-one knows. wishing you well.