August 01, 2017

From ordered chaos to chaos to...?



You know you have reached a specific, critical moment in life when you tell your child, "It won't be long now."  You choke back tears, you don't want to say it, the only other thing you can say is, " I love you."  Perhaps that's better. Both are rather redundant. If my son couldn't understand the exact words, he knew my intention; to prepare us both, ever so inadequately, for what was soon to come. Inside, I railed against this phrase of demise, it felt like giving up.  
The strange thing is that I knew I wouldn't be angry with his passing. It wasn't a decision on my part, not to allow myself to be made angry; there simply was no place for anger. And so it was. What I could not have known at the time was the immensity of the tidal wave of limbo that would hit me. It was impossible to make me angry. Nothing upset me anymore. Together with this there was a swift yet barely noticed undertow that obliterated my self-confidence. If I'm not taking care of my son anymore, what am I?

There was no confusion per se, there was certainly no self-pity, it was just that all the colors simply faded away, the sound of people speaking, or cars in traffic was merely some quaint background noise. Very little mattered, although I distinctly remember worrying about Segev's brother and sister. My journey with my son was something quite different from theirs and try though I might, I could not, for the life of me, figure out what they needed, what they might be feeling. I slept a lot. So many years of sleep deprivation had damaged my memory and I found that new memories were fleeting at best, nothing seemed to stick. 

The muscles in my body suddenly relaxed and nothing disturbed my sleep. There were no sudden starts in the middle of the night: where before I was so finely tuned that any, any change in my son's breathing instantly saw me jump up and stand over his bed, tucked tightly against mine, acting instinctively to clear his chest, open his airway or restart his breathing. An electric clock had to be removed from the bedroom because I would awake to the sound of someone hammering on the walls, only to realize it was the whispering zoom of the electric clock. I no longer felt my heart jump into my throat every time the phone rang. My thoughts slowed down and not once did I think, I need to check on Segev. 
There were valid reasons to be angry, not for the fact that my son was gone, but situations and individuals that had made mistakes, increasing or prolonging his suffering, damaging his health. Resentment doesn't usually disappear into thin air; the conception that, since he was now gone it no longer mattered, is not how my brain works. But there it was, a complete absence of any anger, that, you might be surprised to find out, I worked to slowly reclaim over the last four months. Properly directed anger is a motivating force that increases your ability to focus and it is the extraordinary focus which I was able to sustain for nineteen years, that I most desperately sought. 

I need that focus to finish my novel. To finish a book on Shiatsu. A book on life with Segev and a memoir. Yes, I have no shortage of plans, to continue doing what I did even while caring full time for my son, albeit in stuttering fashion, such as publishing the collected works of poetry.  For some years now my greatest ambition has been to try to assist in the care of other catastrophically disabled children.  I have both the unique abilities and experience to do so. I've stayed in touch with many, reaching out while some have faded into oblivion.
Unfortunately one month ago I again had a fainting episode, most likely brought on by another bout of pancreatitis and fell to the ground in a very awkward position, with my head twisted to the side. When I regained consciousness I was unable to move even my hands and for a few brief moments I thought I had broken my neck and was paralyzed.  The recovery is still very much "ongoing". Once again I could not work, this time for only three weeks, in contrast to December through March when my son's deteriorating condition made it impossible. Financial issues continue to mount: My son's grave is still without a headstone, in part because I simply don't have the means to pay for it. 

I underwent a CT scan of my neck and recently received the results: I have six bulging discs, a straightened cervical spine and five vertebrae, where the passageway of the spinal nerve is severely narrowed, compressing those nerves.
This couldn't have all happened over night. As a matter of fact I've been battling chronic neck pain for close to thirty years, having had it dismissed by two previous orthopedic surgeons since I was either "too young to have a real condition" or, "There's nothing that can be done about it."
Fortunately I've met with a decent surgeon who has come up with a diagnosis ( the rather generic Spondylo-arthropathy) and drafted recommendations I see a neurologist, a physical therapist, a rheumatologist and a spinal surgeon. My appointment for a consult with the spinal surgeon is set for January next year, so I may have to go privately to see him sooner. Right now it is speculative as to what procedures might be recommended, how much they can help and whether I'll agree to do it.  In the meantime I have returned to giving treatments to people to help manage their pain ( yes, the irony) which is proving to be very taxing, to say the least.

It's funny how things work out in life: not the way you hope, not the way you want, but apparently the way it has to be.

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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