April 29, 2011

What to call this?

The benefit of repeated showering in a shit storm is that in the end you gleefully state, Oh! look, it's raining.

I honestly don't understand what has happened that the cries of pain of my son, the one's that respond only vaguely to an arsenal of physical treatment, herbal preparations and pharmacological elixers, can twist my brain so much.

The dogged clinging to the belief that I can make a difference has lost its choke hold on me. Paradoxically I no longer have the ability I once had to resist his suffering. In order to attend to his stricken state with a dose of calm and steadfast purpose.
Now I falter, I feel my own gut twisting inside of me. I am frustrated no end while accepting the matter as a natural course, and am furious with myself for discovering this so sought-after balanced state of mind. 'Rage, rage against the dying of the light' and all that.

Is it possible to come full circle in a thought process as we would hope to? I know I am not filled again with the same sense of outraged purpose that I started with because now I feel just the opposite, quite useless, as if I am going through the motions, as a defense against the fear of losing him. A fear which I never felt before though in the past I had every sound reason to live that fear of his loss.

Fear has gripped me, I think. Perhaps even the fear that this situation will go on for more years and now, with full understanding of his condition, knowing that my strength is not what it once was.

It definitely started in the last hospital stay where the system beat me. Yes, it did. Because they wouldn't listen to me in time. Eventually they enacted the procedures that I put forward but with such delay, so that Segev suffered terribly.

Entire days of vomiting gained from their ignorance. Status epilepticus prolonged for days, to further poison the well. Gastro enteritis and viral pneumonia from lack of forethought thrown in for good measure.

I know that rarely we are able to realize that we are not what we once were. So my realisation should be a blessing. I attempt to instigate compensation and now rely fully on my children to assist.
People Issues which are very relevant to my son's care, characterized by their negative impact and always known to be out of my control, no longer receive even the rebuttal of redundant protestations, explanations, exasperation.

This fait d'accompli I've been served is a bitter, slimy dish.

And then...the pain stops. It fades due to treatment or providence or both. But those darkest moments, that lighten in the nick of time, appear with less pause, more greedily with each episode.

But I've been down this road before. A hundred times. So why should this affect me differently?


  1. Walking down this road endlessly takes a physical, psychological and spiritual toll that life exacts of very few people...the chosen few? My path is not nearly as arduous, not filled with a continuing roller coaster of crises, but I also do do get very weary at the core of my being. I understand and feel a deep compassion and continue to send dad and son my heartfelt admiration for your journey.

  2. You've answered the question you posed. It's the passage of time. It's the enduring on and on. It's wear and no respite and aging, squared.

  3. It's the wall, looming ahead, the wall that you've climbed a million times and sometimes crashed right through but it's still a wall, another one.

    Blessings to you and your beautiful son as you journey forward.

  4. Praying for you and Segev, Elizabeth I love how you worded it.

  5. Phil, I think that the fewer the better...

    A, I give you an A+ on your thoughtful comments.

    Elizabeth I never saw the difficulties as walls, merely puzzles waiting to be solved. I really like puzzles, even; it looks like Segev's may not be as complicated as I thought.

    Angel, thank you.