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.
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
ReplyDeleteOh, Eric and Segev, that was a tight one.
ReplyDeleteNo, 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.
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.
ReplyDeleteI am thinking of you, too, Eric. I'm sending love and peace.
ReplyDeleteThere 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....
ReplyDeleteMy 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.
ReplyDeleteYou 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
ReplyDeleteThinking 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.
ReplyDeleteSegev'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.
ReplyDeleteEric,
ReplyDeleteSegev 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.
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.
ReplyDeleteAll 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