April 14, 2011


I have a patient who worked in high tech since it began but now works in the diamond industry and he suggests that Gold is no longer the anchor of world economy it once was and that diamonds are the de facto stabilizing currency since it is government controlled. I have heard that bat shit is also a commodity, but that may just be an ugly rumor. If not, the windows of my car are worth a small fortune since I last washed it.

Change should be a commodity, then I would be a wealthy man. Considering a one year minimum, I have counted 19 residences as home in my 45 years. 
About two years ago I hit a cognitive low point in my life. The accumulation of fatigue brought me to a state wherein my memory was shot, I had difficulty focusing, days blended one into another and I had little cognizance  of was transpiring around me.
One year ago I hit a physical low when my mother, at her last opportunity to do so, came to stay with me so that I could care for her (and Segev). 
This January and February, with the hospitalization of Segev, I hit my lowest emotional point in my life, where, as an adult, I realized how I was slowly self-destructing as a human being, despite helping or trying to help, no, because I was helping or trying to help, everything that moved.

But things have settled since then. The crises have passed (oh, have they really, Eric?).

There is a woman who comes once a week to help with Segev, for about four hours. She was sent by an employment agency as someone who has experience dealing with physically compromised children. The extent of her experience is that she acted as part time chauffeur for two children with CP to supplement her income as a trained accountant. No, i'm not kidding. The health insurance sent out a tender to all the employment agencies in the area and whomever could supply the appropriate personnel would win out. And this was the result.

She is intelligent and picks up on small, very relevant details, is caring and willing to learn. But she can't lift Segev, hold him, treat him, perform suction, feed him, cut his nails, massage his stomach, readjust his position or basically anything else connected to attending to Segev. But she is a nice person and as I already stated, quite intelligent.  but now I fully understand what Claire means when she speaks of an 'energy vampire'.

And then, quite out of the blue she said, "when Segev is gone, you'll fall to pieces."

I can accept a statement like that. It doesn't shock me in one bit. Somehow, a person like myself is not even surprised she said it, which might seem strange but since I wasn't shocked it stands to reason that somehow my person attracted the statement.
But there it was, this statement.  I believe it may have been made out of sympathy and that she saw me on a particularly tiring day (Vampires anyone?).

As it did happen I think it should be stated, although there are many things that happen to me and Segev that I would like to discuss, to share with you all here, but I don't, out of respect for my children, who occasionally read this blog and for the sake of (at least a temporary sense of ) decency.  
But I won't fall apart. That was my response to her and it was not a protective reflex. I've thought long and hard for a very long time, under many different circumstances, about what will happen if, a very real possibility due to the average course of nature, I outlive my son. 

Nothing. That is to say, I doubt any new meaning will be given to the sum of my experience in attending to the needs of my son and I know exactly what my function is as his caregiver and that it will end one day.
I feel i have learned his true nature. Cracked the mystery so to speak. Living day to day with the knowledge that today may be the day I begin life without Segev, for thirteen years, has not made me laconic nor lazy. Not diminished my resolve to care for him, nor lessened my love. But it has increased my understanding of the value of life, something which I cannot possibly take for granted anymore. This is at the same moment both a profoundly sad realization and an enormously satisfying one. I've known for a very long time that, barring sudden tragedy, I will have a very long time to mourn. Years. So be it.

And perhaps it is fair to say that therefore I live each day with a, sometimes rather uncomfortable, intensity. But as I wrote previously, even there, a new calm has overcome me. And I have never felt fear of losing Segev, strange even more so.

We are always concerned with the future. We always look to the future for better things. But I feel that, if you're not OK with today, how will you ever be OK with tomorrow?


  1. This is deeply moving. ((())) You remain in my thoughts, as does Segev.

  2. I would expect that most people would fall apart with the death of their child. Even if it is only for a little while, regardless of whether it was their time to go or not, regardless of whether their health had been compromised for years or not.
    Every now and then I feel the fear in my heart that one day Ryley is going to leave me. I am still at the fear stage. I am still at the stage where I am holding him tight and not letting him go.
    I expect that when his time does come I will know it and he will somehow tell me to let him go (that's how it happens in the movies right?).

    You are right. If you aren't ok with today, you cannot be ok with tomorrow.

  3. A semblance of peace...hopefully, comforting for the soul

  4. Im still stuck on what that lady said, mouth just dropped to the floor....how could she be so crass?

  5. Kwombles - Thank you, as always.

    Anna - I've held Segev in my arms, or stood by his bedside, or outside of the operating room, with his life hanging by a thread, so many times, I feel that those experiences may actually be worse than the finality of death. When death stares you in the face like that, you can't run, you can't hide.

    Phil -finding comfort is important, more harmony, less anguish. How many actually find a way to balance the perpetrated iniquities of life with understanding and yet strength? I hope to achieve this.

    Angel - I don't think it's crass, I believe we can sometimes trigger things in each other and my energy and hers, despite that I sense her to be a good person, don't gel well.

  6. We have encountered people dancing around the same question. In the beginning, it hurt to hear that...this that what people see when they look at us, our life?
    Our little guy has taught us to live day by day, in the moment. God protects us.