November 28, 2011

No numbers for you!

We like numbers, I believe. We like order. But life's important moments don't occur according to some specific number scheme, the date being, after all, a fairly arbitrary concoction.
Segev's 5000th day came and went. The only mention or consideration I gave it was to place it at the head of a blog post. Is it significant? 500,000 seizures, 5000 days of convoluted living, grotesquely dissatisfying, tenuous.
Numbers don't mean anything other than our desire to see order where we are not capable, without proxy, to see order.
Words even, see the explosion of slang in English over the last thirty years, are losing their meaning for people. Communication in general is deteriorating, as I see it. Technology allows us to christen virtual relationships across time and distance yet also to better insulate ourselves from those we choose to.

My mother worked as an astrologist for over thirty years. She always said to people, 'don't take it too seriously, you determine your life'.

And yet there is fate I believe, in a way. Because fate netto would imply that no matter what you do it will turn out that way. This is only partly true. Fate is really just you, that part of you which is your genetic makeup. Because behaviour may change according to what environment you were brought up in but the way in which you perceive is inextricably tied to your being, regardless of surroundings.
That perception can be fine tuned but it will still create the framework with which to react to the world.

I know a few people who always seem to make the right decision, in the sense that life just flows for them. You need to find a place to live, you go out and a few hours later return with the lease for an apartment. That apartment may be run down, in a dangerous neighborhood but you have your place to live and simply don't see all of the inconveniences that living there present. 

Others are always making it difficult for themselves by paying attention to too much detail. Scrutinizing, weighing options. It's not that they are overly particular mind you, the mind simply has to come to grips with a much larger scope of information, necessarily making the decision more complicated. Perhaps this goes together with a feeling of, if your not making a lot of effort it can't possibly be any good.

That is certainly me. Always over analyzing, scrutinizing, weighing. Taking forever to make decisions because I see a plethora of options. Giving weight to tiny details that others would consider insignificant or simply not consider.

It's all because of the numbers, a sense of control. I've written about it many times on this blog. Of course you have very little control of life. I've written about a sense of letting things flow more, not holding on to past experiences too tightly. Part of that is just me, part of that is my experience with Segev. Barring severe illness, war or accident I will outlive my son. That is a given. To say I don't like that idea would be an understatement but I accept it as what life has given us. In knowing that his time is limited and in combination with his 99% inability to communicate, his many medical problems and the pain he suffers, it stands to reason that I would make a concerted, intense effort to pay attention to him, learn his needs both as person as well as his physically decrepit state. That I would fill that limited time with as many observations and attempts to be there, with the right approach at the right time, both as my son and as my patient speaks for itself.

And in creating that life situation, paying a price. Since there is for everything a price, to some extent even that of identity. But actually it is not a price since it is my way of doing things that have brought isolation and my way of doing things which has taxed my mind and body to their limits and further.
To do otherwise would have cost Segev his health. Of that conclusion, after nearly fourteen years of daily care, I am certain. So for me the real price comes with compromising, finding that balance of give and take, for your child and for yourself. 

But Segev is not every physically and mentally compromised child. I have seen others like him, though none that have gone this route for such an extended time. And it is exactly that extended time which has grabbed my attention so strongly over this last, most difficult of all, year. While his care has become more and more demanding, his condition, despite a constant repertoire of new variations of serious medical issues, is more stable. Now, a watchful eye catches most complications before they can arise. So there can be only one real conclusion here and that is that the years of toil have taken their toll. On me. And I knew this would be the case within the first month of Segev's life yet I couldn't have known he would come forward with us until now. Had someone told me he would, then most certainly he wouldn't have because then I wouldn't have made the effort I did.

My old landlord had heart trouble and at the age of 75 had to undergo surgery where his chances of survival were 50-50. He told me how he lay in hospital surrounded by his children and grandchildren before the operation. I said to him, "you must have been proud of the love surrounding you. The care that they were showing".  His expression turned to that of a scowl together with a bit of pity. You need to know that he grew up as a true pioneer in this country, when there was basically nothing. You lived off of the sweat of your brow and survived by the bond of family and your close nit community. "Get out of here. All of you! You're bothering me, tiring me" he said to his children and grandchildren.
I was in shock. "You have to show them you are strong, Eric", he said. "You have to show them the way".

Well, as much as he is my hero for mustering true grit in that life and death situation, with his own mortality so exposed, I can't be that person. Not to that extent. I see Segev's mortality and see cosmic unfairness to be certain. But then I already knew that as well. It seems the great truths are things I've always known and yet, without the experience of living through them, they remain just ideas. Before I thought them to be true, now I know them to be true.

So where was I in my thunderous attack on the universe? Ah, numbers, they don't hold the meaning. They can stand as symbols, marking important events, but they are not the event themselves. 
The event itself has an intrinsic meaning that we can connect to and we mustn't get caught up in outward details which call our attention. Less than 90% oxygen saturation requires the appropriate measure but even then, there will always be other elements out of control, often unmeasurable, perhaps as CO2 levels, exerting their influence. Just as I maintain that our experience of the world is of only the 1% which we can actually observe or interact with, there will always be that measure of influence you have and that 99% where you stand with your hands in your pockets.  

What remains is the value of the interaction. Which often relies on your willingness to see what is not necessarily the most obvious thing in front of you and to that, no number can be assigned.


  1. I imagine that numbers serve to quantify our experience in the moment. "Good" numbers may mean that all is well in the moment; "bad" numbers which represent a deviation from our perceived norm make is hypervigiliant...ever ready to spring into action and restore homeostasis....that's our crafted life; but as you say, and I believe, its is the interaction which has true value and numbers cannot reflect that.

  2. I don't really have a response for this post. I read it several times and found it hard to decipher. Your thinking is so profound at times that I get left behind a bit. I would like to interpret what is happening in our lives at a higher level but it all becomes too much to think about and I can't conjure the energy. You almost sounded a bit pessimistic - I hope your energy levels are not becoming too taxed or is that just a futile thing to say. Probably so.

  3. Marcelle, it's me being lighthearted, Will-o'-the-wisp, nearly ephemeral. But your intuition is astounding, much more than you realize.
    My energy is good enough...I'll leave it at that.

  4. Ok ... I had to look up that word - 'ephemeral'. That's a good one!