May 08, 2011

The question of inner life as force majeure

   Can we take any of it with us? I can’t remember

So, the inner life, like a dream filled landscape will always resound richly of our efforts and understanding, but stark in contrast to what reality we can employ.

The question of inner life as force majeure for parents who naturally are confronted with their children’s incongruous state seems to me the crux of the issue.

What we want for our children, naturally, is not to be disadvantaged. But they are ill equipped to challenge life in the way that we do. Instead life challenges them, sometimes in an absolute way, as a struggle for life itself.

Basic human rights have little foothold in basic societies possessing rudimentary and wholly inadequate means of supporting its population.

Nature has all the answers, whether we like it or not. Nature is never right or wrong, nature does not philosophize. We strive to set ourselves apart from nature and the world we have built is the result.  All civilizations being based upon armed conflict, from the spread of Greek demokratia to the freedom of the industrial revolution, expansion and enforcement have preceded calm and understanding.

By this token of thought, the very struggle of parents of severely physically and mentally compromised children for a place of honorable standing, as a luxury of affluent society, does not stand a chance even as a velvet revolution.

This is not to say that people by nature are not also compassionate, but the essence which drives the society successful in maintaining its population is a forward motion of growth. Growth, when impeded, prevents a smoothly running circuit of collaboration. Or thus is our perception.

Correspondence: to achieve an understanding of a person’s needs and attend them with the appropriate remedy

The inner life of a parent attending to the needs of a severely compromised child is necessarily richer than someone who does not because the difficulties encountered in that living are inexorably connected to the complex emotional quality of preserving one’s child, in contrast to what is accepted.

Thus the physical burden of caring for a child who cannot metamorphose into an independent, average person, being compounded by the emotional stress that protection carries.  This creates a kind of staccato psychology in the parent since they are isolated in their unusual concerns, truncated in their normal social interaction and finally for the most part, left alone to savour their difference from the mainstream.

We value individuals whom are able to redefine the boundaries of our human existence yet running the 100 meter dash ever faster doesn’t further our established dominance in the naturalistic need for survival. Fantastic feats of engineering need not be questioned, we do because we can.

Severely compromised children with physical and mental constraints also can. Of course if we want them to be judged not by their proprietary nature but by the same parameters as the majority is, then they simply can’t.

But this isn’t my new-ageism; as in ‘we are all unique, celebrate the differences.’  

The Special Olympics are of note here where that event tries to take a very heterogeneous group of compromised individuals and equate their abilities according to time or distance as though they have the same starting point.

Just as we often give great deference to those that pass from life, bestowing upon them even the notion of immortality but fail to find how they are due honor and respect while living.

If I were interested in this inglorious immortality I would have given up on my son long ago.

As it stands we are here, alive, to deal with the cause of living. And to my mind there is no reason to believe that a priori, one life is innately valuable while another is not.

It is clear to me that parents of compromised children will always carry that complex emotional burden that will not be understood by those without similar experience.

These parents must jockey for position in a more and more regulated society, which paradoxically creates  more and more individualistic tendencies and outlets, making us less and less patient for those that cannot, or often in their eyes, will not, conform to the standard.

When a child is sick with a severe illness, especially those more readily acknowledged in public consciousness since they are shared with adults, there is a great deal of understanding, but the often inner struggles of a parent of a compromised child are in part inner, exactly because the difficulties are not understood, not accepted.

While I accept that pain and suffering and a shortened, severely limited life are part and parcel of my son’s existence, as an evolving species, developing our concepts of societal living, it is necessary to continue to define what quantity and quality of pain and suffering is necessary.

And here death is not the answer; life is the answer.


  1. Been thinking of you and Segev. I appreciate your deeply introspective posts. ((()))

  2. There is much to think about here, much to re-read. Thank you for sharing these intense thoughts. I hope that you and Segev are well.

  3. Another very insightful post and yes life is the answer, and we pursue that with all the spirit allows. Your post somewhat remind me of a book I just finished, "The Body Silent" by Murphy. "...for the disabled are not a breed apart but a metaphor for the human condition. The disabled represent humanity reduced to its bare essentials...are "marginal" people and the study of their tenuous position at the edge of society will tell us much about all of social life."...and of spiritual like.
    btw: am anxious to see and read more of "Little Job"...a monumental undertaking which I anxiously await. My warmest to you both...

  4. I can't help but think of the last day's of my daughters life after reading your post. I agree whole heartedly that life should have been the answer to the question, Im forever buggered over it.

  5. Kwombles Hard times certainly, so thank you.

    Elizabeth and Phil, hopefully I can pen lighter things soon though I hope to concentrate on the book more than ever in the coming months.

    Angel - My mentor, an intelligent and religious woman, believed that we are given guardian angels when we are born but that we must "hold on to them" and ask them for help. However you explain it I don't believe we make decisions like the one you had to for your daughter, only by ourselves. There are other forces at work, other people involved.
    Life is always the answer for me but that doesn't mean I'm always right. We are after all only human and we decide human things while what is above or beyond us is up to those forces.

  6. Dear Eric,

    Sorry for disappearing for a bit. I love your deep thoughtful posts too.

    Well I just wanted to stop by and send you some hugs :)



  7. Eric, wanted to pop over and take a minute to let you know that you and Segev are in my thoughts. ((())) I hope things are okay, that Segev is doing alright, that you are getting rest so that you remain up to the daily battles you wage to help Segev.

  8. Hi Eric,
    I'm Frans, your mother's buddy.
    Hansje told me to read your blog.
    I do not think I can grasp the magnitude of what is happening in your and your son's life.
    But you are a hell of a dad, I think.
    Hansje sure has passed the quality of loving into you.
    I feel very privileged to be with her.
    Too bad my backgammon skills suck.

    take care,
    Frans Somers