September 26, 2012

More on causality

Something has been troubling me of late. And by lately I mean the last forty years or so. There are some things i want to say that I know won't be very popular but then I believe many of the things I say raises a few eyebrows or make people shake their heads. I'm perpetually swimming against the stream and coincidentally I've been fighting against my own self for a very very long time. Well things are changing.

I've been taking care of my son now for well over fourteen years, an intensive no-holds barred encounter at the edge of my sanity. My son is not to blame for this, I am. Though in my feeble defense i offer that I feel I have no choice in the matter; it seems to me to be the only option. Muddying the water further, I care for him much less now than, say the first twelve years when I had more vigor, more anger to put into my endeavors. 

Nowadays I have much more understanding of how I need to fit into my son's life, after bringing the entire escapade close to that point of no return; where shadows jump out at us and even simple things in daily life seem to be trolling our very existence. 

I've always pushed it hard, to see what lies at the boundary of my abilities, which have been substantial, to see what it's possible to accomplish when you set your mind to it. That moment of the day as it ends and becomes night and while there are no shadows, something is nearly visible, something that has life.

"The spirit is willing but the flesh is weak", yes, but also the weaknesses of the spirit become apparent at dusk and while it was hard enough to acknowledge that physically there were limits to what could be done, I never really wanted to make a proper assessment of the inadequacies of spirit. Who wants to look at their weaknesses, right?

When I look at how the extreme giving of oneself to a cause has been represented in humanity, whether it be religious belief or personal ambition I see that the world appears well balanced within a framework based on a minuscule amount of creative force, let's say like the 'big bang' and the rest, which is basically a long drawn out decay of what was created. So just as in the universe things are decaying, entropy, those forces are prevalent in the human psyche as well, where the force of destruction is so much greater than of that fragile, ephemeral source-energy, creation. Comparisons can of course only go so far but in looking at the creative nurturing force of caring it stands to reason that it naturally pales in comparison to the prevalence of decay, destructive and generally negative forces.

Taking this a bit further is quite disturbing in my view. Mind you, not disheartening, it just rubs me the wrong way. Because if you look at human endeavor in history we seem to have spent the vast sum of our knowledge and abilities in producing an endless stream of death and destruction. One can argue that this is part of that natural cycle, that destruction in the end also forces the act of creation but the sheer amount of physical and mental effort devoted to death and destruction is simply not offset by the creation of vaccines, motorways, iphones, art, clean running water, because in the end all of these things act rather coherently in order to sustain a nature which gravitates towards destruction.

Show me the money!

Those are my thoughts as I jump up out of bed, last night as most nights, for the umpteenth time, to see my son choking, gasping for air or in the midst of his seizure, a new kind spontaneously making its appearance; the need for suctioning, repositioning, physiotherapy and the pulseoximeter having fallen for the fourth or fifth time from a smaller more normal seizure; all happening last night, as most nights.

This is nothing new and so most will say, where there is repeated occurrence there is nothing remarkable. The ins and outs of human nature. "act rather coherently in order to sustain a nature which gravitates towards destruction", really now, Eric. 

Reality. I don't take kindly to reality. I prefer my fantasy world, where I take care of my son and others are on the same page as me. Not because he is my son, as I also take care of other children, offering consultations as a professional and sometimes even as an experienced parent to other parents of severely physically and mentally compromised children. Most are so far away that I say, what a great boon this electronic medium is. Offering support to others in what way that I can prior even to my son being born.

Where is the enormous and overwhelmingly sufficient effort of caring for one another? Where are those seemingly endless energies that we apply to killing and hating and hurting? Oh it is so complicated though, isn't it? People believe they are protecting their loved ones when they go to war. See others as threatening, as the aggressors. We all have blinders and our minds can justify anything. Anything at all.

As I said it is complicated: from war comes industry and discovery which feeds discovery bringing about mechanics, medicine, better control of our environment, better protection from the elements.

Bang, Bang! You're dead!

But at what point do we say, alright then, we've created this world, now let's go about working on those undeveloped areas of our psyche, we have the luxury of being able to nurture now since as a species our survival is no longer a matter of recourse.

Ahh, but our two fold nature, where nurturing is hardwired, is actually the impetus for much of our more expansive, aggressive behavior, isn't it? You can't have one without the other. And balance is a dynamic thing, always searching, creating forward motion as the energies of creation and destruction play off one another. How could all the vastness of the universe come from one tiny point and yet point of creation and vastness form two sides of a balance scale.

It seems to me that you have to reconcile with the fact that human nature is something so complex, sometimes arbitrary, more often than not destructive, in order to appreciate that beautiful little sliver of non-partisan caring that sometimes, not always, get tapped into by parents caring for their severely disabled children.

It seems we can never have what we want; that establishing balance in our nurturing lives also requires we nurture ourselves. We can't be whole and give our children a perfect existence. And by perfect I mean living a small, reasonable little existence like the countless people I see taking walks with their normal healthy children. I also have normal healthy children who came before my son Segev. And I paid close attention to them and to being with them. To enjoying their presence and my time with them. Watching them develop from simple life force into a complex functioning entity with a unique identity. I stand in wonder of that,albeit absolutely mundane, experience. I have no sense of personal accomplishment in this respect, but have always felt excited to have these other people around me. I wish I could have seen more children enter my life, but circumstance intervened and changed a great deal of things.

Also out in the world, on a macro scale, circumstance, environment and conditions play an important part of shaping people's behavior. There are examples of shining lights in the darkness of humanity that have been registered in our brief history as a species on this planet, where adversity brought about selfless creation, as part of a choice, an exercising of will. They may be few and far in between but I have even witnessed some of them myself.

When I hear or read that a child, whom i have grown to know through electronic medium or personally, has passed away due to the overwhelming complications of a physiology ill equipped to deal with our world and look at how the parents have done their best to create a sense of normalcy in their extravagant, overly generous family life, I don't think, 'oh how terrible, another light has gone out'. I think, there is light for those that have eyes to see.

So I have been thinking about what kind of place my strange little son has in this world, where his very decline represents the destructive forces of nature, like light cast through a prism broken into different colors. Just business as usual? I don't think so. I don't accept it. After fourteen plus years of breaking myself on the grindstone which is his inevitable decline, I still won't accept that that is 'just the way it is'. My own little fantasy world then, where what we do now, the spirit we show now in caring for our children, becomes the knowledge of tomorrow.


  1. Segev has helped change my life for the better.

  2. We, our children, our love of them which exceeds much of the world's understanding provides the balance against the forces of indifference. It's a choice; and many would not have chosen our paths. That choice is the energy which allows a higher level of human awareness and consciousness to evolve. Evolution of the species and its role is a very slow process. We contribute to that upward spiral. Your lives enrich us, contribute to the flow of positive energy and prevent decay. We are survivors; we generate life force which extends beyond the boundaries of self...we help maintain that vital balance by what we do...and it is good!

  3. Eric,
    First I want to thank you for all your supportive words on my blog this last month. Your concern and your words mean a lot to me. I'm not altogether sure what you are saying in this post (you are a brilliant man and I don't always completely grasp your message), but I too have been the hand (with the help of a few others) that has literally kept my son alive the last almost 14 years. I so completely understand the impact on you,both physically and emotionally after all these years. No one who hasn't lived this life can begin to understand the toll it takes on us, even when things are the status quo. It's easy to say that we do what we do for our children because they are, after all, our children. But, sometimes, I think we need to pat ourselves on the back and recognize that what we do is extraordinary and that there are a lot of parents out there who can't or won't do what we do -- what you do. I am fortunate to have help in caring for my son. You do not. I admire you, I respect you and I am humbled by you. For what it's worth, I get it, I get you and I get the physical and emotional toll this life has on you (us). The fact is, we love our sons in a way that most people can't begin to understand and because of that we will give all we've got and then some to make sure they are provided with the best possible care we can give them at any given moment. You are doing an amazing job despite the challenges.

  4. Thank you for your replies, they are evidence of lights that I hold tight in moments of difficulty.