February 28, 2011


Stay positive. If I have to tell myself that, I'm in trouble. To be positive, to meet adversity and seek out solutions is part of the nature my parents endowed me with.
So when I found myself thinking, 'stay positive Eric', while in hospital with Segev, it carried the quite serious implication of finding the very foundations cracked.

For a moment I thought perhaps the experience in hospital of waging a battle of wits under the crushing weight of little more than three hours of sleep every twenty four hours, had traumatized me. Not only the uncertainty, as per usual, of doing the right thing or of whether Segev was going to make it, shook my confidence to its core. 
Because what shook me so much was the realization that adapting yourself to that system is liable to get you killed.  

Once you are placed in a mammoth system that sustains thousands of individuals in elaborate processes on a daily basis even patience, even knowledge, even a pleasant demeanor will not alter the movement of one tiny cog in the machinery. What is relevant is only what the system allows to be relevant. 
I did not lose my faith simply because physicians or nurses did not agree with my take on things - I got a few things wrong and learned from it to be careful in reaching conclusions, understanding context better -nor because this stay in hopsital was without a doubt the most physically and emotionally draining of many serious stays over the last thirteen years. When explaining the need to be extremely diligent in investigating what is wrong with Segev I often received as reaction a lack of interest, skepticism, as each specialist looked within the scope of his expertise, limited by youth or ego and I found myself on more than one occasion saying, "Just how much more do you think Segev's body can take?"

I lost my faith because over thirteen years of hospital stays, after over twenty years as a healer, the number of people I have run across who put their heart and soul into their activities can be counted on the fingers of one hand. And without that dedication, the perseverance which furthers, the less of ego, the desire to learn and accepting our mutual dependence, we are lost. We are blind. 


  1. Your are so right! There are so few people who put their heart and soul into their activities...for us, it is to allow the spirits and the bodies of our children to have the optimally most pleasant experience despite the odds during their earthly travel with us. By travelling together, even in the distant world of blog, there is an uplifting element. Remember that you are among the few...

  2. Dear Eric,

    Sorry it's a bit wordy...

    The bit when you said that when you tell yourself to stay positive you know that you're in trouble, just wanted me to send your hugs even more.

    I cannot feel or know how you felt in hospital this last visit, but my heart in it's own way does.

    I was in my early twenties when I had my eldest and he was born 2 months early, so going from being a carefree young twenty something to being a mum after a dinner and a cup of tea... oops waters broke, was a shock, and for him to be 32 weeks and in the Special care unit with all the routines and the condescension that 'what did I know?' and being belittled..., and no I didn't know how to change a diaper/nappy, but I did knew what was best for my son. I remember them wanting to put formula in him that I would be allergic to and my husband intolerant to in to this "32 weeker"... and I fought tooth and nail, for me to feed him, and I did, but it was 3 weeks of "torture", in the end we worked out how to "break out" of SCBU, what we had to do. While we were in there, every second I turned my back a new in-turn was wanting to do the same procedure that someone had earlier, on him not because he needed it but because they wanted the experience) so I did end up "living there" I wasn't allowed a room (reserved for bottle fed babies), so I lived in a chair! and I felt how you described, it wasn't having my son early or establishing feeding,it was the "machine" (hospital) that "faceless machine" that just gets to your core. (and then all over again with Oatie) So what I/we went through is not even a fraction of what your family have been through, but from the smidgen that I did experience, I know how that felt.

    Well, to me, you did break the system, you got Sergev out, and I think that those doctors and nurses may in future think of you/Sergev and I would hope question themselves/actions or how they treat/care for their patients.

    I loved how you summed the machine up "expertise, limited by youth or ego", but it's so true.

    I call such people not only in that profession but in general any job/profession "jobs-worth they don't want to think, and they don't want to see, or treat people as individuals and just don't care, as long as the money hits their bank account. Isn't it a sad that people who specialised in a specific area, spent years to get there, even then are "jobsworths", like they do their thing and just go home.

    The only place that you don't see that is something like that is the Olympics, (I know it costs a stack to go, but they have put their heart and soul in to their profession/goal).

    I am thankful that there are people like yours and Phil's families out there, and I agree with Phil, his comment about how we can travel together in the world of blog there is an uplifting element.

    Sending hugs to all, and sweet dreams, Love Mel xxx

  3. Phil knows what he is talking about, but "A" even more so.
    Mel, I'm just glad that you were able to fit it all in, I've tried to leave comments that the system *laughs* wouldn't publish so I had to make it into a blog post instead. But it wasn't the hardship of the experiences over the years, it's also the fact that I understand the medicine side of it but still believe we can do better, much better.

  4. Eric, I think I probably had one character left x

    I agree, x

  5. Was worrying about you and Segev with so many days between posts. Even when health care workers care, with so many about them who lose sight of the humanity and a sense of urgency to provide care, even their herculean attempts to change the system may be for nothing. What's frightening to think of is the patients for whom no advocates exist to stand between them and the system.