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.

I wrote all the time, nearly every day, or simply made up stories and told them to people, sometimes placing myself in the narrative. These stories are not to be confused with ‘lies’, ‘fibs’, ‘fantastical concoctions’ or ‘wild tales’, though I was not infrequently admonished that this is exactly what they were and that I should, ‘stop living in a fantasy world’. I was not deterred, my intentions were pure.
In adulthood, I discovered a connection to certain aspects of people’s narratives by being able to intuitively say the right thing to a person at the right time. These rare encounters were to have a crucial influence on peoples lives, in essence allowing them insight which led them to an alternate future. That realization came roughly at the same time that I decided to (temporarily) abandon writing, a decision that held sway for over fifteen years.



The very first thing I wrote after this period was a poem memorializing my mother-in-law, of whom I was very fond and successfully helped treat for pain and discomfort after she was diagnosed with renal cell carcinoma. Years previously, waking one morning with an epiphany, I chose the profession of physical therapist and based my practice exclusively on visiting patients in-home. I seemed to gravitate naturally towards treatments and strategies of pain management. This calling is now ongoing for more than 26 years.
In 1998 a force majeure entered my life when my son Segev was born with a life-limiting condition and extreme disabilities that made him wholly dependent on round the clock care by his loved ones. For eighteen years we have struggled mightily to allow him the opportunity to live, to allow the meaning he brings to our existence to unfold. Countless times he has been close to death, pulled back from the brink; either by the brazen sheer strength that his tiny paraplegic body somehow magically contains, or by the will and determination of his family to find solutions that give both longevity and quality of life.

In the last few weeks Segev’s weakened, poorly functioning body, was struck down by a viral pneumonia that brought him to within hours of death. But he made a partial recovery that has allowed him to hobble along with a small portion of his lungs still functioning. Unfortunately a neurological downturn began developing concurrently, exacerbating the horrendous seizures which have plagued him daily since birth. For nearly a week now my son has been in a medically induced coma (not unlike the natural comas he has faded into too often) and the situation doesn’t look good.

But, I don’t have a plan. I never do. Remember that thing where you say the right thing at the right time? Intuition? It hasn’t failed me yet, but that doesn’t mean it always appears when you want it to. It just doesn’t seem to work that way. And it took me decades, decades, to interpret the things I was seeing or feeling, so that I could make decisions with confidence. After 18 years of caring for my son, a toll has been exacted, a levy imposed on my mind and body which has shaken that confidence. Depression, singularly the result of continued exhaustion from chronic sleep deprivation, acts to further dip one in the murkiness of doubt.



The one thing that now preoccupies us, on an hourly basis, is what is best for my son. What would he want, is an impossible question since he has never been able to express anything but either joy or discomfort. So we have to find an answer within the confines of those experiences. For myself I have always known that if his smile disappears, I will not be able to maintain that grinding pertinacity that seeks goals, if all that it will lead to is oblivion. The only goal which remains is to do our best to make him comfortable, that is obvious, if no easy task, not in the least because we are beyond tired both mentally and physically, stressed to breaking point. Financial pressure mounts as I am unable to work.

The thing that isn’t so obvious though is that during the course of the discussions of late with his mother and siblings how questions of our own ‘comfort’ perniciously creeps into that equation.  Not actual comfort, much more what and how much can we do that still bears resemblance to a path of dignity for our beloved Segev.


I wanted to say, ‘as I have been unable to work, since doing so would compromise my son’s chance at a momentary reprieve, a few moments from which to squeeze a last bit of joy from an exquisite life’. But there you have it. Dying isn’t pretty folks, especially where kids are concerned and after eighteen years of this business, I find myself unprepared. I don’t want it to end, which has served us well, bringing us this far along, but that is now a hindrance. Because after all, what a parent wants in this situation is to see with clarity; not only what to do, what to think, what to feel but to come to terms with the fact that somehow, somewhere, this is OK. That to ‘rage, rage against the dying of the light’, can be replaced with the knowledge that all journeys end, but that that doesn’t diminish one iota from the experiences that have enriched us. Bathing our very being in a sweetness and purity which are immortal.

12 comments:

  1. You definitely have the writing touch. You express in a very unique way, what we, as parents to severely disabled children, feel, but not always dare to say. You have an inner strength, and I am sure it will lead you in the right path, and will help you through this indescribable difficult time. All my support, Iris Kowen

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  2. Oh, Eric and Segev, that was a tight one.

    No, dying is not a pretty business!

    Yes, all journeys end.

    Finding an answer within joy and discomfort and the experiences which make both.

    And I can see the connection between writing and pain and management. It runs like Ariadne and her thread.

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  3. Eric and Segev, I am thinking of you. Your words pierce my heart. I am imagining being you right now, but with Nicholas. The image in my mind is fluttering and hovering. I wish it was easier for you, for your dear Segev and for your family.

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  4. I am thinking of you, too, Eric. I'm sending love and peace.

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  5. There are no good words to comfort nor to provide solace, There are no good words to allay deep grief and pain. There are no simple, nor complex ways to allay the physical agony of the father and the child. There are no simple decisions. Wounds run deep and some wounds do not heal. The only solace is the bond between a father and a son, nothing can diminish or separate unconditioned love ... that lasts forever. I do feel your sheer exhaustion and Segev's physical frailty ...you and Segev are always in our hearts and our thoughts. This is one hell of a tough journey....

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  6. My heart is with you Eric, as I understand more than most this part of the journey. Segev is leading you ... trust him, trust your heart, trust the love that has guided both of you the last 18 years.

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  7. You gave Segev a life full of love, comfort, warmth, touch, interactions, color, sound and light. The alternative could have been so different. Sometimes it's not the quantity, but the quality that counts. When it comes Segev's time to fly free, he will spend that time with those who love and care for him, safe, and as pain free as possible. We could all be so lucky. <3

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  8. Thinking of your son and you and your family. May he pass peacefully, without pain and surrounded by love. Thank you for sharing. We parents who will face your situation in the coming days and years, pray and weep with you.

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  9. Segev's life has been imbued with the active expression of such unfailing love. It will carry him, and all of you, through this transition. May his shining spirit be free, and may you be at peace.

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  10. Eric,
    Segev has been so lucky to have had you as his father. Undoubtably God has chosen you to look after him for a reason, all journeys do come to an end.

    Segev will never die, he will live on in your heart as well as all
    Of the hearts of those who love him.

    Thinking of you and your family, praying for Segev to be at peace.

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  11. Eric, I was so pleased when you shared some of your experiences involving Segev's care in a comment to my article in the Algemeiner. Since then I've wanted to explore your beautifully written blog more intensively. Today I finally did so, only to learn about the extreme and recent deterioration in Segev's condition.

    All of us whose children are profoundly impaired constantly sense the pall of their fragility. But that surely didn't prepare you for the ordeal you are now going through.
    Hoping that Segev will amaze you all with a miraculous improvement and have a רפואה שלימה,
    Frimet

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