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 )

PLEASE SHARE TO SUPPORT US!


December 28, 2016

MEMENTO TE AMARI

Because the air is heavy of late, I hold on to what is essential and real.

"You are beyond sweet, and have accomplished more than I could have hoped for. You have fought to get to where you are, with a fortitude that is beyond understanding. There are no words to describe how proud I am to have you as my son, to be able to walk this path with you. You may not understand this, but I know that you understand that we love you."

                                              (from the dedication for his thirteenth birthday)



As you were born, long and hard years.

Provisioned with a mantle worn tightly;

a solemn oath to keep this plight in dignity, 

the suffering minimal,the light shining.

My struggles are as his breath and his breath has been my joy:

a shell discarded 

a new man born.

His heart beats without knowing,

the difference of life and death,

the power to calm and secure ruling over all adversity,

which is love.

                                        (poem based on the dedication to his twelfth birthday)

                                                                                 

August 28, 2016

STILL NOT TIME

STILL HERE, STILL HERE

From long ago, a serenity long lost.

I felt, as I woke Segev's brother and sister, that I was teetering on the brink of a precipice.  I thought that I had come close enough to my son's death enough times, to stand firmly on my own two feet. But I felt unsteady as in the midst of a severe storm, not buckling but oh so unpleasantly buffeted and pummeled. I thought, 'a few more hours' and that soon I would be consoling my eldest and middle child and they would be consoling me. So I woke them as they tried to find rest after they had helped during the night, assisting in emergency care for their brother who was barely able to take breaths and whose oxygen level, despite hours of constant chest compressions, ambo bag, IPV and suction, was hovering at 62%, having been stuck for some time as low as 50%.

August 17, 2016

So many miles we have crossed.

I am an old man now. Not in my mind, of course. But all the same, for eighteen years I have been fighting one crisis after another, each day. One more time to prove that life is here to stay for as long as the moment will carry. I breathe and so must he. There is no quitting, until the end overtakes us. And all that is, has been just and each moment has been weighed and those things, those moments, those accomplishments will never succumb to what is less. The endless nights of dawn, the turmoil, the anger and the lack of respite. If he can do, so can I. Perhaps less, certainly much less than once, humbled to know that less is forgetful and looking for pleasantries, groaning and no longer jumping from bed to treat, placate or save but to drag aching bones and confusion to the fray; but with a breath and a prayer, always, always into the fray.

June 09, 2016

Reflections

What does it mean to be an extreme caregiver to your child? Well in my case it has meant gaining 35 pounds, becoming too exhausted and injured to maintain a lifetime regimen of exercising and that I started smoking. Smokers, of course get no sympathy. I grew up in a household where both parents were heavy smokers but I didn’t start until I was 46 years old. That probably means something, but I’m not certain what.
Extreme caregiving has meant that my expression of creativity, writing, was put on hold for over 15 years, until it exploded from my unconscious with blogging about my son and life with him in 2010 and then publishing poetry in June 2013. After fifteen years of carrying my son and his wheelchair up two flights of chairs, my back was finished and now it’s difficult to even lean over my son and perform the physiotherapy which has helped him to survive.

May 26, 2016

Thoughts, after fifty years on this earth.




Forty four years ago I decided I would become a writer, because I wanted somehow to bring about resolution to conflicts that I witnessed people experiencing in their lives. That was my second choice, actually, my first was to become God, but I quickly realized that if I could think of that at age six (I wasn’t terribly concerned with actually how I would become God) then adults, infinitely smarter than myself and higher up on the pecking order, could do so and would be given preference.
But stories could be manipulated, changed, and so I vaguely envisioned rewriting people’s lives and conflicts and that they would then be able to see that things could be done differently and the outcome would be a more positive one.

May 05, 2016

The aging caregiver

There was a short conversation with the palliative physician who joined the team about six months ago. Going forward, after the catastrophe of attempting to control my son’s pain with a variety of opiates, putting him at death’s door yet again, he said he was running out of options. Fortunately I was able to increase his three other pain meds and add a fourth, which is helping Segev considerably.
But today is another such day where he is suffering signifcant pain. The last week has been another episode where he is vomiting frequently, his lungs are heavily congested, there is an increase in seizures and drops in oxygen saturation and a hard battle with an infected gastrostomy site, despite the constant methods of care. Today is another day where I need to decide whether I go to work or stay by his side.

February 08, 2016

The Gentle Savage

I feel I need to write this, yes, in the middle of it all. During the night we took turns, inserting a finger into my son's mouth and pulling his lower jaw forward, allowing him to breathe. Yes, without doing this he would have died. Suffocating. Slowly or quickly, I didn't know, but the natural thing to do was to fight for him, when he couldn't fight for himself.

The why and how of his deteriorating health, and the repeated incidents over the last few weeks of status epilepticus and no longer being able to breathe on his own, seems almost irrelevant. My mind still races though, even as I write this and he lies next to me on his side to allow his lungs to drain better, to try and understand the possibilities, the causality. And we've made decisions based on how we interpret that information. We've decided that if this happens again we will most likely take him in for an emergency tracheotomy. Because even when there is no air coming into his lungs, you can see him making the effort to breath. He's not ready yet to leave this plane of existence.

I slept for three hours on the couch at his mother's, while she held his jaw. My daughter suggested a position for him to lie in to force his airway open with enough success that the need to manually help him to breathe became less frequent. The seizures, which started in the evening and have continued through this morning have been reduced with massive sedation. His lungs have filled up again, despite the constant treatment and all these things have blended into a fireball of destruction.

The good times have been there, I have pictures to prove it for when my memory fails me, and I assumed they should give us the strength needed now, but in a somewhat bitterly farcical sense, those moments stand in stark contrast and offer little help.

To be honest, it's eating at our resolve, or perhaps to put it into a more positive light, we are simply recognizing that this is the natural course of things in my son's fragile and savage life.


January 16, 2016

raw update: nothing is the same

January 5th
It's difficult to know what my son is experiencing right now. Every aspect of his condition has worsened dramatically over the last month. The last week has been hell. While we bombard him with multiple pain medications, it's true that he suffers much less pain.
Using opiates is not a new idea but one I've always vetoed until recently, relying instead on standard pain meds and cannabis. None of which significantly impacted his severe pain. The fentanyl does that, with reasonable consistency and efficacy. But there is a price which we are all paying as Segev's condition continues to deteriorate.

January 09, 2016

UPDATE

Once again we find ourselves in the midst of a true crisis. The kind where you simply don't know if things will sort themselves out.

There are many different kinds of seizures, but the ones you fear the most are the brutal myoclonic tonic ones that ragdoll your kid with such a violence, that your heart breaks looking at it. When this happens despite all the medications, the CBD and the Cannabis, despite all the careful chest physio, despite the Fentanyl and analgesics, as though the hand of God grabbed your child by the scruff of his neck and went to town with a vengeance.

January 07, 2016

I, the aging caregiver: Introduction





Aging is a relative process. Being vain enough to think that I have aged well, until I look in the mirror, has long ago been replaced by the realization that the accumulated mileage is no longer covered by warranty. Coming up on eighteen years of caregiving for my son, it hasn’t always been easy, heck, it’s never been easy. If not for his smile and the twinkle in his eye when I sing to to him, (well cackle like a hyena is a more apt description, but he loves it!), I wouldn’t have been able to give one hundred percent. 

Of course, what was one hundred percent a few years ago is pitiful when compared to today. It’s not much of a paradox, the fact that the more you give, the less you have to give. You need to pace yourself for the long run, but to begin with you cannot know how long that will be and so you give it your all, hoping the long run will teach you to balance your own needs in face of your child’s. I never found that balance, and yet in part because of that, my son is still here. 

December 28, 2015

I, The Aging caregiver: prelude

What's it like to get old?

 'I know, I know' .
They pass you in the street, preoccupied and muttering.
Unkempt, you see and think, 'They should get their life together.'
But they don't roam the streets, or ask for a tuppence,
they are kept in their homes for the most part.