May 23, 2017

The bowl


My beautiful son has gone. Where to, I don't know. I ask myself, “Is he just a memory now?' A picture on the wall? But memories are such a powerful thing; we learn from them, they give us courage, if we allow them to. We are in fact living memories of our experiences, of our ancestors. Their DNA works its pernicious memory into our thoughts and actions, whether we wish it or not. I've been changed by my son, not by his disappearance but by his presence.
Then I sit, alone, suddenly aware of the world around me, with all of its noise and color, or lack thereof. The noise of machines that accompanied our life together twenty four hours a day, is replaced with motionless life, staccato images strung together. “What is your life now?”, I wonder. Where is the meaning now? The white noise of ordinary life is truly deafening. I can't seem to recall the rasping of his breath which, when it stopped, saw me spring into action to bring him back, carry him along for the ride, a little longer. I see the jerking of his body as a seizure took over. Hundreds of thousands of times witnessed, a frail body, a mind which could not resist. I do remember the curve of his lips, the widening of his mouth: a smile that sent a seemingly infinite stream of pure energy into my mind and heart, reigniting that sense of purpose. While we are here, love will manifest itself, like a soft whisper only you can hear. The only thing, that we can truly know. But so subtle, so gentle. Seemingly the most fragile of all forces in existence. Where true hardship, suffering, outside events, turmoil and destruction, even of the slightest kind, instantly annihilates and we are left to think that it was deception on our own part to ever consider it was a force to begin with.  “Reality sinks in”, is the expression. Now you move on with your life. This hollow sounding statement, like the polarity of an electron though, can go both ways. Despair at loss is seen like an empty bowl. But do they realize that they are holding a bowl in their hands? For me, my son and the experiences we had are not the contents, which can be poured out, but rather the bowl itself. I can feel this imaginary bowl and am discovering how to strike it, make it ring out in a resonance that reminds me, I am whole. That's what love does.

April 01, 2017

Oh my Love, my love



All fled
All done
So lift me on the pyre
The feast is over
and the lamp's 
expired

 


March 8, 1998 - March 24, 2017


He told me to tell you, “I love you”. Yes, you out there. To acknowledge that, while you couldn't be here, doing any of the things I did to keep him alive, each and every day, you were watching and listening.  I tried my best to be his sunrise and you were there, hoping for the best, cheering and taking courage from our struggle and invested in the beauty of that timeless reward. So thank you for that.

Death is not pleasant or beautiful but as far as it was possible, I want you to know, that Segev died peacefully, with us there, bound in love. He went quickly, so quickly, without any hesitation. His body had become too weak, so weak that I had stopped pressing on his chest to help squeeze out the excess carbon dioxide building up in his lungs, not only for fear of breaking his ribs, but because in those last minutes there was no place anymore for lifesaving measures. It was time. The sense of the end weighed like a heavy curtain, stifling my thoughts, making my heart pound.  

We had said our goodbyes to Segev before. Many times this last year his life-force hung by a thread and could have been cut in each of those moments. But he came back, much worse for the the wear but still managing to smile. Oh my God that smile, like a drug coursing through my veins. How could he still smile? Still react as I continued to gently prod his spine back into place, massage his legs, sing in my horrible, rasping singing voice. Still acknowledge us with his amazing, endless eyes, despite enough sedation and medication to threaten the life of a healthy adult.



Then, a moment, captured in this picture that was taken less than a week before Segev passed, after a lifelong struggle against illness. He shone like a guiding midnight star, a beacon of absolute willingness to love, but this time for merely two minutes, before fading again into his stupor. Fading, fading. Alternating between barely breathing and fighting for breath. 

No more fighting Segev, you have nothing to prove. We all bear witness to that.

But before the end, I would have a conversation with Segev, about an hour before his death, which would change everything. I let him know that it was alright to let go, that the fight had been won. Victory declared. But he already knew that, and I felt a little ashamed for having thought he would need my permission. He was somehow finally in control. 
I let him know how sorry I was that it had come to the end, full well realizing that I was simply overwhelmed at the prospect of losing him, as I knew, this was really the moment, this was it. But he admonished me, and I heard a voice say, “This is not something you can hold on to, this death. It belongs wholly to Segev. You cannot touch it or alter it, it belongs to him.” And as I heard this I felt a slow ebbing of sadness, a slow release of the tightening in my stomach. Barely a tear flowed and I no longer looked at my son, in that one moment, as though he was a frail and battered boy, but rather as a man, who was bravely facing his own demise.

The moment had arrived and his breath, a sound so well known to me, which anchored me to my sanity, was still. I called out, as I held his head in between my hands and kissed his face; “Oh my love, my love!” Nineteen years of tears denied, found their way out, finally.

I rose from my son, lying ashen and still and pulled Shoval and Noa close, as tight as I could as we cried and sobbed. “ I love you and am proud of you”, I told them. Then Segev's brother and sister went to him for a final embrace, a hesitant, final goodbye, uncertain, as though there is a proper way to say goodbye to their beloved brother. Who they loved so very, very much and helped in so many ways. Each with their own methods and attentiveness, down to the most basic practicalities of care that their brother needed, as much as they could, whenever they could.
I turned to the palliative physician, who has accompanied so many on this path, and said, “ It's not every day you witness a legend's death”. 
I could only vaguely notice that he went outside, this quiet and gentle doctor, holding back tears. 


I washed Segev ever so gently, after the good doctor had removed the PICC line and catheter. As it had become a part of him for fourteen years, allowing him to live, I left the PEG button in his stomach. I laid him on his bed and at my behest my daughter picked flowers and made a beautiful arrangement around him. 
His expression was that of absolute peace and he wore a soft smile on his face. Just like that he lay until the funeral, at peace, smiling, frozen in time. And then it was time to let even his gentle body go, that body that had called out to our hands with such intensity and regularity throughout his life, yet he, with such grace, as much a balm to us as our love was for him.











January 30, 2017

Collected works of poetry 2017

I'd like to announce the publication of the latest edition of the Collected works of poetry.
It has been completely revised: loads of new material and many, many poems have been revisited for the first time since their original publication.

Because of the continued deterioration of my son's condition I was fearful that I would not have it in me to continue writing nor undertake the significant task of publishing. Hopefully I have done justice to the experiences and memories of the children and individuals who inspired me to write.
Available on Amazon etc.
(preferred venue: https://www.createspace.com/6852513 )

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