Wariness in posting on this blog has taken several different forms over the years as my understanding of internet etiquette (yes there is such a thing, despite that the internet seems to remove all boundaries, for some) and my son's place on this earth has progressed.
There are often personal issues which I would love to delve into as they form a connecting piece of this complicated life. Few ever make publication. Since my writing is entirely spontaneous, often a reaction to something I've seen or read and, of course, experienced but never the less, 'off the cuff', I have to be careful not to get carried away and I admit that on many occasions I am unsure as to what should be included and what shouldn't. Quite a few of the readers here are also writers and so you know what I am speaking about.
Still, to me openness is strength and by strength I mean, open communication, transparency, strengthens our understanding of the connections we make with others, helps us to question our way of thinking and increases our awareness and thus ability to humanize that 'other'.
But now there is a sort of problem, one that I've spoken of extensively over the years, that being the inevitable wear and tear of this kind of intense life, battling for understanding about my son's condition, battling for his life.
While I actually am not fond of the poem, Do not go gentle into that good night, the oft quoted, rage, rage against the dying of the light, has certainly been my battle cry all these years. Soon to be fifteen. Segev will be fifteen in March and his resilience, above and beyond what I have seen in my life, should be a continued, enormous encouragement. To maintain the girding of loins, gnashing of teeth, rending of cloth that, invited or not, has seen us bleed.
There is as many of you know, that slight balance where we endeavor to create a positive experience from the hardship; fighting the battles but also relenting to quiet and tender exaltation of the beautiful human beings in our care. Finding myself, instead, teetering between these two. As extreme the depth of volition, so too the feeling of a bond destined to be severed.
Now, while knowing a thing or two about care, the time has come to understand why it is that anger has resurfaced, leaving me perplexed. Some feel there is no need to question this anger in the face of relentless fatigue, pathological lack of sleep and an endeavor which takes, in equal measure to what it gives.
I understand now why it is that I am angry just as I have come to understand the inevitability of that anger. I will write about this differently later.
Now, when I make a bank transfer to pay my rent as I have often done and discover a week later that there is no record of such transaction, I need to be aware of how my functioning is no longer reliable. Perhaps it is just a glitch in the internet, right? Actually on too many occasions these glitches occur. Too often I find that I cannot concentrate on what is being said to me. My face sometimes twitches when I speak because emotions are bubbling under the surface and continuing to speak is the only thing that will stop them from breaking barriers that are there for good reason.
This is not a case of , 'have a good cry' and you'll feel better, get it out and it's done with. It goes deeper. Reading is a chore for me. One paragraph at a time is the best I can manage. This from a person who used to read a page once and be able to reconstruct literally most of it by heart.
That's all fine, I accept this bit of wear and tear; there is no gnashing of teeth over this at all. But it makes me unreliable. It means that I can no longer provide what is most important to me; the ability to do what I say that I will do.
You're only human, some will say. Yes, true. Unreliable just like so many. No longer can I feel superior to others that what I say, I can always back up. Now, I just keep quiet. Raw emotion doesn't cut it anymore. Now maturity must be called upon and that is an enormous adjustment to make. Because that maturity is realizing that, despite the unfathomable resilience of my son, reality is a bleak and weary affair that has me teetering on the brink of cynicism. And that is just plain awful.
Then there is a reprieve, as now with the improvement in Segev's health, confounding anyone's expectations. With it does not come jubilation, as has always been the case. This is a time for reflection. To understand the anger. To allow the body, unwell for longer and longer periods, to rally.
I'll leave you with a piece that will not be included in the upcoming second edition of Little Job's book of broken poems:
There is a song about the taste of a favorite sweet wine having fled my lips.
Where friendship is a bond for all time and circumstance.
It is true what they say that one can lose in a day
that which took a lifetime to build.
My favorite cigar no longer embers on my palate
and no special night shines
with the din of table laughter.
When pastimes are all the frivolities, forlorn and forsaken.
But friends quell the shallowness of my heart.
Bring the music of your voices and
the mercy of your opinions.
Bread is on the table.
Butter is on the table.
Let me hold your place at the gathering and hewn silk, spun
from experience and laced with wisdom
will decorate our feast.
Where is the taste of no sorrow
with a moment of now, like the dash of your fermented spice?
©2013 Eric Fischer All rights reserved. No unauthorized use or transmission.