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
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
July 05, 2015
I kiss his hand.
It is damp as he flickers in and out
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
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
June 16, 2015
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
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
January 10, 2015
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:
December 29, 2014
This post was originally planned for publication here on the 18th of November 2013 as a farewell to blogging. I offered it as a guest post to 'Bloom' blog where it was released in somewhat simplified form. Here is the original entry.
I have to wonder sometimes at the audacity with which we are judged by others. Of course it happens to us each day and we are even guilty of it ourselves but nowhere can it be more alarming then when we feel our children’s very lives judged because they are severely disabled. As a parent providing round the clock care for my son for over fifteen years there are many constants in what has become our tiny, nearly hermetic life. Unfortunately judgment is one of them.
November 09, 2014
Each moment with Segev is special to me, though I find my mind wandering more often to fantasies of an easier life, mostly as I drive to house calls, trying to provide pain relief for others as physical therapist.
I feel gutted that these fantasies don’t include my son. I don’t dream of taking him to the park, to the beach or to visit a local ice cream parlor. When I fantasize about traveling, of going on a vacation, I don’t imagine taking him with me, to look at the sites, visit friends or family, as though i would be carefully watching his wonderment at the diversity of experiences to be had.