November 25, 2015

His life, his intention, his meaning.

"There is a friend who has lost his daughter. She was fifteen. In the afternoon, in the quiet of his study, (where have all the terribly comforting noises and effort of care-giving gone? The rustle of plastic when opening a new syringe wrapper. The pop of a medicine container, the cling of stirring that medicine in a glass. The distrust in life, the pride at her commitment to renew herself each day) he broke down in tears. How could he live his life, doing justice to all the sacrifices, to honor her short but exquisite life? How could he go on without the meaning that caring for her brought? He realized then, that her sacrifices were not in vain, since she lived a beautiful life. A very difficult one, but filled with laughter, drama and the mundane. Like any other. ‘God I loved her’, he thought. But then the obvious struck him, that he loves her and carries not only those experiences inside of him, but her essence. Yes, she is gone, but her meaning isn’t. His very bones breathe her existence. Despite the appearance of limitation and suffering, he chooses the positive in life, because that’s how they lived it.
His life, his intention, his meaning."

excerpt from 'Before the god of the fields', an upcoming novel.

November 19, 2015

So loud

In a life such as that which my son, Segev, leads, it is often the silence which is the most telling. When seizures happen, which have once again become pressing, you see the issue right in front of you. Maybe there is something you can do, increase the oxygen, suction, support his flailing arms (even though they are tied into elastic bandages to minimize the damage), wipe away the tears. Then comes the quiet. How well will he recover? Is the next one on the way? Or more pertinent, what caused it this time; a build up of neurological tension from frequent, excessive pain? A blockage in his lung? Do I reposition him in his chair or move him to the couch where he can lie more prone? 
What is cooking while he seems calm? Because all of his problems, everything, is always on a simmer. Relentless. Then the silence is broken again, pain from his hip (his leg moved less than an inch) sends him into howling pain. During each bowel movement, screams, as the contents move through his intestines and presses on nerves in his spine, compromised by severe deterioration there. 
The silence in between is not a hopeful one. He rests, and I am so happy that he rests, even though it is either from exhaustion or the cannabis, pain meds or valium. But then he is violently pulled out of slumber by pain or seizure. Time to vent his stomach, at least every thirty minutes, because the oxygen which helps keep him alive is also pumped into his stomach and brings on screaming.

Now we're on board, the palliative train. A new team, headed by a concerned doctor. He listens carefully and is helpful. Is this the express train, or are there many stops still ahead? Fentanyl, a very powerful opiate is introduced into the conversation, but there are no pauses, no quiet reflection. No need to absorb the information, think through the consequences of side effects, weaning. Just information that will be put to use when the decision is made that there are simply too many painful episodes in a day. It's information that in the past  made my heart jump, but not anymore. Now it is a bit of a relief; the thought that when it does come to that point when we think it simply is too much, there will be something to do.

The treatments to lessen his discomfort, the pressing, manipulating of his back, massaging, still helps and continues unabated. By my hands, but also his brother, his sister and of course his mother. Many many times throughout the day, the evening, the night. The physiotherapy at three O'clock in the morning to get his lungs open, continues. The crises come in waves. 
Every thing goes on as before, except for my thinking, that things will continue to go on as before.

The quiet in between is no longer my friend, the silence is a lie.

September 22, 2015

Short and sweet

He is twitching again today. It starts and goes on for hours, eight, ten, twelve hours perhaps more. Even valium cannot subdue it and when he twitches, his hands always, feet and stomach regularly, he hardly reacts at all. Sometimes he will lazily open his eyes, in a way that you know he is still partially there with you, but expressionless, just like a nod of recognition you might give a coworker you pass in the street. None of his seizure meds help, nor the cbd, not the thc and he sweats constantly, his palms and feet turning cold in that way, though not from the air conditioner, merely cold and sweaty for their own accord.  Usually preceded by a massive clonic-tonic seizure, the kind where he turns red and then blue, despite oxygen piped through his nostrils in a steady twenty four hour stream of ‘wash-unk’s’ from the oxygenator’s electric pump. And an overabundance of phlegm clogging his delicate and nearly disembodied lungs, more than ever. Clearing his lungs enough so that twitching will stop. But the pressure on the lungs from his spine on one side and the diaphragm, lunging upward from the other, keeps the status quo, the memory of hope; I’ll give you a few days of this, and you take a few days of that, and together we will bludgeon consciousness, tit for tat.

July 22, 2015

A look back at January 1st, 2012

Miss her every day. The picture of my mother below was taken one and a half years before she passed. She had already lost the ability to speak half a year previously and could no longer walk. But she could still laugh and nothing was quite so important to her as bringing out joy and laughter. She laughed a great deal, despite a really tough early life. Despite her illness. Towards the end she was reduced into kindred, mirror images of my son; paralyzed and speechless, fed through a gastrostomy tube, pain on the outside. While inside the same strength and kindness continued unabated.

In the end I had to hold her mouth closed, eventually adopting the neck collar solution just as with Segev, so that her airway was more stable and her breathing a little easier, the heavy rasping noise, just like Segev's, subsiding slightly.
Arriving at 11.00pm on that freezing Dutch winter night, directly from my flight,  I treated her for over an hour, with the utmost gentle care. Despite the facial paralysis a bit of the pain contorted tension lilted from her face; I was reminded of Joe Coffy from the film 'The green mile' and the terminally ill woman he helped. But I'm no Joe Coffy and life never takes us in and lets us ride out to the sunset like in the movies.

And what transpired for Segev while I was gone for three days? He was calm. Without any massive seizures. He smiled and made noises and didn't complain of pain. The best three days he's had since before anyone can remember.
When I came back on Sunday evening and took Segev home he had an alarming seizure, right on cue. Afterward his troubled breathing kept us both active during the night and the next two nights and days until he was once again reasonably stable.
I told him he wouldn't see his grandmother again and once again I couldn't stop the tears.
I thought that with all we've been through together, with the times Segev's life hung in the balance, all these years of toil and uncertainty, I was prepared for anything. How wrong I was. It was like being hit by a car. At times my body would not listen. I watched as I lurched against a garden fence, holding on with all my strength so as not to be thrown down onto the ground. The rending of clothes and the gnashing of teeth, literally, was finally understood by me. I knew what it was to raise my head and bemoan the heavens. Finally, exhausted I was able to continue on to my Uncle's house not far from the hospice. I was caught in a vortex and only my amazement over this struggle with myself to do something, anything besides collapse, suffered conscious recognition. Arriving at the house, I poured myself a double of bourbon, and another.

At home my palpitations returned, fiercely. You go on. Life goes on whether you want to be a part of it or not. No one is asking your permission. You're just experiencing what everyone does. I thought at least I would control my physical self but what a sham thought. What an emotional hack! I held onto doors, railings, walls. It felt as if I was breathing under water, pushing fluid through the alveoli.  Instead of shouting, uncontrollably I found rumblings, deep guttural utterances rising, shaking my chest and escaping as vocalized grunts and moans.
Anything I had done for her over the course of her illness, everything I had done amounted to exactly nothing at that moment as life ebbed and each moment was noted as I stood next to her to bring calm to her consuming pain and to raze the emotions of the beginnings of her stark, finally fulfilled journey.

July 15, 2015

For the summer issue of Inner Tapestry, Carolyn Murray wrote an article about Segev and myself. You can read the issue online here: Caregiver Diaries




Inner Tapestry

July 05, 2015



  I kiss his hand.
It is damp as he flickers in and out
of consciousness.
Do you understand?
I'm here, watching him,
watching over him.
He seems everywhere, in everything
and yet I must keep him
in this tiny little life where anything
is everything.

Both by lack of choice and by choice, the hours that I am with Segev both as father and caregiver, present unique challenges. The accumulative affect both strengthens and weakens me; being able to see a positive change in his condition, though momentary, is a collusion of Giri-Ninjo that both elates, giving hope but also deepens darker feelings.
Possibly the main challenge I face each day is that I ask myself, how can I love him more? Some days I even wrestle with the issue, while other days I prefer to retreat to my shell.  What? What is that you say? How is it possible to love him more? Because love is bottomless, endless.

June 22, 2015

Hold on/Let go

I'm better and Segev is dealing with the regular issues, every hour of every day, but with no crises at the moment. So don't read peculiar things into this song, just enjoy...

June 16, 2015


When your back goes out 
and you can
no longer 
lift your
in and 
of his

he is finally

April 29, 2015

I've returned to exercising. I have a stepper now and  I make sure to get on it at least once a week for up to fifteen minutes (woohoo!). A lifetime of exercising and hiking, martial arts and motivation, reduced to this. A middle aged man, overweight, smoking, large swaths of memory erased, barely in love with life.
But before that, what shook me to take some positive steps was that the fainting started. The worst case was a Friday, recently. I tried to crawl to the bathroom at 06:30, thinking I needed to vomit. I woke up about half an hour later on the floor of the shower stall. I needed to call someone. Segev was with his mother and so were his brother and sister, but the phone was in the living room. The distance from the bathroom to the livingroom is about six meters (20ft) but as I slowly raised myself off the tiled floor to a half sitting position, I wasn't sure I could make it.

March 07, 2015

O Savannah! Savannah, I knew you not
but for the tales of brave end to many adventures.

And your quest, an explorer of love
to clasp
that wisp of fairness
that bond above.

A spate of garbling cries, laughter from which we die,
a sentence of truth, where life spat out lies.

The captain has thrown us on the rocks
Though tugging wind yet no horizon near,
he lambasts a sweet sound, like a voice or melody,
slowly losing all its fear.

I fear naught, I fear naught.

My friend David Bordon has walked a nearly identical path to me in his life with daughter Savannah. I imagine us walking a country path, many different trees and flowers, insects and odors. He seems to know the path better than me and more often than not is a step ahead. But here our paths diverge and when I meet him down the road, it will not be the same. But, wherever there may be a gap in our coincidental experiences, it is bridged by a bond one shares, that exceptional bond of unimaginable, undeterrable love, for your vulnerable child. The absolute utility of love lays its bones bare with the loss he now suffers, the unexpected passing of his daughter just two days ago, March 5. Words mean little and thus David gives us but a few words, succinctly drafted, of the life together that has ended. I know that life deserves far more attention, than he can provide at the moment. But more will come, to move us to understanding, when the time is right.   Still I cannot speak for David and thus I cannot do justice, to the depth of the connection he knew. More important though is the beauty with which his daughter Savannah expressed life, leading to unimagined joy.  A life ostensibly placed in her parents good keeping, and their hands, loving and strong, were filled to overflowing. I cannot imagine how a human being is still held together with such an experience unfolding. I am in contact with very few, my circle is nearly hermetic, but half that circle is comprised of parents who have lost their child. 

Often the inevitability of it all, makes it that much more bitter. I cannot speak for David but imagine that anger is not the emotion he is seeking now.  The only thing I can imagine he knows, is that the beauty of the life, as devastating as exquisite as they lived it, was more worthwhile than can ever be put to words. 

February 12, 2015

With the coming of morning, all fires die out

As some know, I am on call twenty four hours a day, seven days a week. For the last five years caring for my son has meant that about 90 hours a week I am no more than two arm lengths away from him, night and day. This is due to the fact that five years ago I made the decision to significantly reduce the amount of time I physically take care of him, as I was no longer able to properly function under the strain of 72 or even 96 hour shifts. Help from outside, whether family, friends or healthcare workers was not forthcoming. Those hours are now once again in flux since Segev's condition is certainly not improving

January 10, 2015

What you hear on the winding path

Facebook has reminded me that I have not posted an update of Segev for 41 days. What is there to post about, I wonder. A moment’s smile? A distant dream? While this blog is merely an empty echo with the occasional instinctual spasm of pride and hope.

What I have to report is that pain and stupor have become my son’s mainstay. That pneumonia is not measured by the number of recurring events but rather as a constant permutation; either mild, our 'staved', or ‘severe’. Presently, once again it is severe and intravenous antibiotics are little more than a bet placed on the roulette wheel. So it might surprise you then to note, in the following paragraph, that I do not feel weighed down by the future, even if the ‘F’-word, Futility, creeps ever closer to the entrance of my vocabulary. I honestly did not believe, with the experiences of this past year, to see my son alive in 2015. But on to the next paragraph: