tag:blogger.com,1999:blog-50002675687089433452024-03-14T20:04:31.876+02:00 I am a broken man/You can't break meA blog concerning the life of an extremely disabled child, his father and the poetry of that lifeEric Fischerhttp://www.blogger.com/profile/02471331868560587898noreply@blogger.comBlogger275125tag:blogger.com,1999:blog-5000267568708943345.post-90617182620708208212018-05-27T19:00:00.001+03:002018-05-27T19:08:17.895+03:00May 27thToday would have been my mother's 74th birthday.<br />
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My mother was a force of nature.
Known to everyone as ‘Hansje’ she would spontaneously speak out against
injustice whenever she saw it. Sometimes that didn’t go well for her. Once she
observed a young couple with their four year old son in a shopping centre. They
passed a toy store and the little boy paused to look through the window at all the
toys on display. The father grabbed the boy’s hand and yanked him so hard that
he fell down and was crying. “Come here!”, the father commanded. Hansje
approached them and said, “Don’t you ever do that again!”<span style="mso-spacerun: yes;"> </span>They didn’t take well to her interference and
the mother coolly responded, “Get away from us or I’ll kill you.”<span style="mso-spacerun: yes;"> </span>Another time she was on a flight and an
orthodox Jew was sitting next to her. Before takeoff the man complained to the
flight attendant that he can’t sit next to a woman and they should rectify the
situation.<span style="mso-spacerun: yes;"> </span>I don’t remember the exact
words my mother used but the gist of it was, “Oh, grow up.”<span style="mso-spacerun: yes;"> </span>The man punched her in the face. Whenever I
was with her nothing like this ever happened, we just always ended up laughing
till it hurt, either at her unusual expressions and flowing sentences or silly observations. She loved jazz and Leonard Cohen and sometimes when she spoke, you could hear those rhythms.<br />
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<iframe allowfullscreen='allowfullscreen' webkitallowfullscreen='webkitallowfullscreen' mozallowfullscreen='mozallowfullscreen' width='320' height='266' src='https://www.blogger.com/video.g?token=AD6v5dx37NreYgBZBhxYzuvFbmQgmD6m12VmctNV-iSAXg6Yj48IbGSgMU5nWGH6BEblVfISc7vPtjYKQxdiDUGqCA' class='b-hbp-video b-uploaded' frameborder='0'></iframe>(<span style="font-size: x-small;">Hansje in a scene f</span><span style="background-color: white; color: #1c1e21; font-family: Helvetica, Arial, sans-serif; font-size: 12px; text-align: start;">rom the film "Mensen van morgen" (People of tomorrow) dir. Kees Brusse 1964 </span><span style="background-color: white; color: #1c1e21; font-family: Helvetica, Arial, sans-serif; font-size: 12px; text-align: start;">A documentary of several Dutch youths discussing their experiences and thoughts on life. This film was iconoclastic, helping to break through many taboos in Dutch culture. It employed a unique montage editing method where the questions are never heard and participants seem to be reacting to the answers of others though they never actually met each other. </span></div>
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She was pregnant with my
older brother when she developed eclampsia.<span style="mso-spacerun: yes;">
</span>With no treatment at the time she sunk into a coma and the doctors told
my father she wouldn’t make it. An emergency cesarean saved my brother but my
father was told to say his goodbyes. She pulled through but suffered from a
kind of verbal dyskinesia or aphasia. When talking about the founder and
publisher of Playboy magazine, he was ‘Huge Hefner’. Living in Canada she would
mention that the weather report said it would be bitterly cold because of the
‘windshield factor’. She had hundreds of these confabulations and whenever I
would point one out she would laugh that hearty laugh of hers. <o:p></o:p></div>
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Somewhere around 1986 when my
parents were living in Atlanta I flew out to visit them and lo and behold who
was on the plane, in coach? Muhammad Ali. We didn’t follow boxing in general in
our household but my mother loved watching his fights. As we disembarked I
could see my mother coming towards me at the gate and I was dreading the
embarrassment of her perpetual mama-bear hugs; “Oh Eric! I’m so happy to see
you!”<span style="mso-spacerun: yes;"> </span>She extended her arm forwards,
which confused me, walked right past me and shook hands with the legend.
“You’re the greatest of all time!” she beamed and his enormous hand enveloped
hers. He smiled and said in a whisper, “Thank you.” <span style="mso-spacerun: yes;"> </span>My hand, by no means small, also disappeared
into his, soft and warm and then he shuffled off by himself. <o:p></o:p></div>
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Serendipity was a mainstay in her
life. As she was stopped at a stoplight in Toronto she heard shots being fired.
She looked to her left and leaning her elbow on the door, inadvertently pressed
the lock on the door. Suddenly men were exiting a bank wearing ski masks.
‘Oh,’<span style="mso-spacerun: yes;"> </span>Hansje thought to herself,
‘They’re filming a movie, how exciting!’<span style="mso-spacerun: yes;">
</span>One of the armed robbers ran through the line of stopped cars and made
his way to my mother’s car. He pulled on the door handle several times. Hansje
just looked at him. The thief went for the car in front of her but was
apprehended by security guards.<o:p></o:p></div>
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In the 80’s she ran an art
gallery in Amsterdam. One evening walking along the street a man started
following her. She didn’t walk faster or look behind her but let him get right
up close and then wheeled around with a shout, taking up a karate pose. “Watch
it buster!” she said, apparently with so much authority that the man took to
his heels and ran off. She wasn’t shaken by the experience and didn’t give it
any thought after that. <o:p></o:p></div>
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She joined a women’s choir which
they officially named, “The happy mentally deranged women’s choir.” Joy and
happiness were an essential part of her existence and whenever someone had a birthday she always found the craziest birthday card to send or a handy little gadget, "Just something silly", she would say.<br />
Many years ago I had to undergo some
abdominal surgery and she flew in from Atlanta to be with me. She decided it
would be best if I flew down with her to recuperate in the warmth of the south.
I could barely take a few steps because of the pain from the surgery and as we
sat waiting for takeoff, one of our inevitable fits of laughter began. The pain
was unbearable and I had to tell her to go sit somewhere else or I would
rupture my stitches. She got up and moved towards the back of the plane, still
giggling.<o:p></o:p></div>
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During the same trip as the
meeting with Ali, which was a few days after the Chernobyl disaster hit the
news, I wanted to get some more experience shooting video as I was studying
screenwriting in Toronto at the time. Hansje suggested we go to the local mall.
I was worried about light streaks and exposure, thinking this was simply a
challenge to my technical abilities. The camera was large, with a separate
recording unit and wired microphone and it became clear by people’s reaction
that they thought we were a real film crew. Hansje immediately picked up on
this and told me, “Give me the mic and start filming”. <span style="mso-spacerun: yes;"> </span>She went up to a tall athletic man and
introduced herself with her Dutch accent, “Hello, we are from DAF, Dutch
American Film, and we’d like your reaction to the Chernobyl disaster.”<span style="mso-spacerun: yes;"> </span>I was overwhelmed by her confidence, no
hesitation.<span style="mso-spacerun: yes;"> </span>He replied that he couldn’t
talk about it as he was an active air force fighter pilot and any opinion he
gave could be construed as that of representing the air force. After a few more
interviews we wrapped it up and she turned to me saying, “Well that was fun
wasn’t it?”<span style="mso-spacerun: yes;"> </span>Understand, she didn’t do
this to be in the spotlight herself or to try and prank people: she did it to
give me the experience that I was looking for and her saying it was fun was further
encouragement for me to overcome any fears I might have.<o:p></o:p></div>
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That’s how she did things,
subtly, without force and always with humor. She had a powerful intuitive sense
of what a person was going through. This often resulted in confused looks when
she would approach a stranger and tell them something. With people she knew she
would often say something which, while still part of the conversation, seemed a
bit odd or out of place. It took me about thirty years to figure out this mode
of communication that she had. She was fully aware that people often didn’t understand
her, but she didn’t mind and never forced an issue. She got along with just
about everyone and when I was out with her, if I left her alone for a few
minutes, to go to the bathroom or something, it was guaranteed that when I came
back she would be deep into a conversation with someone, more often than not
both of them laughing and her new friend sharing their life story with my
mother. “Good for you!”, “That’s great!” were her common phrases and almost
always, her patented goodbye, “Have a great life!”<o:p></o:p></div>
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I never heard her speak badly
about another person or have an argument. She had a rough childhood and was
swindled out of a substantial inheritance by her own relatives but she never
dwelled on it or cursed those that did wrong by her, not even under her breath.
It was in the past so it didn’t matter anymore; she was ridiculously
spontaneous and always looked to the future as positive potential. For years
she worked as a volunteer in a shelter for indigenous women in Toronto, with
whom she felt a kinship so deep that she was accepted into a tribe by the
elders and presented with an Eagle feather. Wherever she travelled language was
no problem, not only because she spoke four of them but because her hands were always
pantomiming regardless of whether she was speaking English to an English
speaker or trying to communicate in a foreign land and, because her laughter
was the great ice-breaker and people would respond to the great spirit that she
was.<o:p></o:p></div>
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When she became sick with ALS, it
was an especially aggressive form which attacked her speech first. Now
scribbled notes were constantly being produced: a mix of questions and answers
as well as philosophical exposition. She still smiled even after walking became
impossible. I would exchange emails with her and could feel the frustration of
not being able to communicate with hands and laughter. I would mirror her
thoughts in our discussions, clarifying what I thought was at the heart of her
ideas and I knew that I had finally understood her fully when she wrote me, “Eric,
my dear, you are able to write my thoughts.” Every day I think of her,
appreciating her positive attitude towards life, her love and openness, her
intuition and her patience. For me, there is so much to learn from those
positive attributes. <o:p></o:p></div>
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She often worried about me
because I had dedicated my life to my son, Segev, which meant not paying heed
to my own needs. “What about you, Eric?” she would say. But she left it at
that. She never once told me how to live my life or intervened or showed that
she disapproved of some life decision I had made. “Good for you!”, “That’s
great!” was what I heard, because she trusted that each of us are on a path, that
experience will bring knowledge and that one of the worst things a person can
do, is judge another. Another lifelong staple of our conversations, even after
she became ill, was her asking, “So did something funny happen to you today?”<o:p></o:p></div>
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Hansje passed away in January of
2012 and I still regularly feel like calling her and telling her a bit of good
news and I can hear her response clearly, “Oh Eric, that’s great!”</div>
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<o:p></o:p><br />
<br />Eric Fischerhttp://www.blogger.com/profile/02471331868560587898noreply@blogger.com2tag:blogger.com,1999:blog-5000267568708943345.post-88991307907100088542017-08-23T11:30:00.001+03:002017-11-27T21:34:02.819+02:00The boy who cheated death<div class="separator" style="clear: both; text-align: center;">
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<span style="font-family: "times new roman" , serif; font-size: large;">Tomorrow
it will be five months since my son passed away and I meditate on him
each day. </span></div>
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<span style="font-size: large;"><span style="font-family: "times new roman" , serif;">There are an
endless stream of powerful memories, </span><span style="font-family: "times new roman" , serif;">endless crises but also his smiles and the knowledge that nothing was left undone nor unfinished.</span></span></div>
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<span style="font-size: large;"><br /></span></div>
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<span style="font-family: "times new roman" , serif; font-size: large;">Death, I suppose, was an unwanted house-guest who had stayed with us for so long
already that I bore him no resentment. Except for those times, each
day, when he would tap me on my shoulder and ask, “<i>Is it time</i>?” </span></div>
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<span style="font-size: large;"><span style="font-family: "times new roman" , serif;">He couldn't hide his disappointment when I would softly say, “No.”
It was at those moments that I would be busy working to revive my
son or reduce the damage to his lungs or increase the sedation
flowing into his veins, each remedy according to the nature of its cause. Often,
finally able to catch a few minutes of sleep I would feel his icy
hand on my shoulder, as Death roused me and asked, “<i>Is it time</i>?”
And in a fit I would jump up and go to work; reviving my son or
reducing the damage to his lungs or increase the flow of sedation
into his veins. 'No', I would say, 'It's not time.' </span>
</span></div>
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<span style="font-size: large;"><br /></span></div>
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<span style="font-family: "times new roman" , serif; font-size: large;">But
after nineteen years Death had become rather bored of our predictable exchange and could often be
seen wandering off. Then, finally, the time had come; we knew that
the monumental purpose that we had given ourselves had come to an
end. There would be no more reviving. We chose together that it was
time to let go of this life, on our
terms: we knew that it was time.</span></div>
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<span style="font-size: large;"><br /></span></div>
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<span style="font-family: "times new roman" , serif; font-size: large;">Suddenly
there was a scream from the other room and then death came running
back in. He called out frantically, “Is it time?!”. His fist was
trembling as he raised it, asking, “Is. It. Time?”. I locked my
gaze with his and shook my head.</span></div>
<span style="font-size: large;"><br /></span>
<div dir="LTR" style="margin-bottom: 0in; text-align: justify;">
<span style="font-family: "times new roman" , serif; font-size: large;">"You're
too late.” I said. “You're too late.”</span></div>
Eric Fischerhttp://www.blogger.com/profile/02471331868560587898noreply@blogger.com2tag:blogger.com,1999:blog-5000267568708943345.post-59437361550948796982017-08-01T21:59:00.001+03:002017-08-01T21:59:48.620+03:00From ordered chaos to chaos to...?<div style="text-align: justify;">
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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. </div>
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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?</div>
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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. </div>
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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, <i>any </i>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. </div>
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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. <i>Properly </i>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. </div>
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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.<br />
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. </div>
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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.</div>
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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."<br />
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.</div>
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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.</div>
Eric Fischerhttp://www.blogger.com/profile/02471331868560587898noreply@blogger.com2tag:blogger.com,1999:blog-5000267568708943345.post-83205654794661681652017-05-23T10:51:00.000+03:002017-05-23T10:51:48.391+03:00The bowl<div class="separator" style="clear: both; text-align: center;">
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<span style="font-family: "times new roman" , serif;"><br /></span></div>
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<span style="font-family: "times new roman" , serif;">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.</span></div>
<div align="LEFT" dir="LTR" style="margin-bottom: 0in;">
<span style="font-family: "times new roman" , serif;">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 t</span><span style="font-family: "times new roman" , serif;">rue hardship, suffering,</span><span style="font-family: "times new roman" , serif;"> 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.</span></div>
Eric Fischerhttp://www.blogger.com/profile/02471331868560587898noreply@blogger.com2tag:blogger.com,1999:blog-5000267568708943345.post-4159803290617322142017-04-01T21:15:00.000+03:002017-04-08T18:34:09.758+03:00Oh my Love, my love<div dir="LTR" style="margin-bottom: 0in; text-align: left;">
<h2 style="text-align: center;">
<div style="text-align: center;">
<i><span style="color: #666666; font-family: "times" , "times new roman" , serif;"><span style="font-size: x-large; font-weight: normal;"><br /></span></span></i>
<i><span style="color: #666666; font-family: "times" , "times new roman" , serif;"><span style="font-size: x-large; font-weight: normal;"><br /></span></span></i>
<i><span style="color: #666666; font-family: "times" , "times new roman" , serif;"><span style="font-size: x-large; font-weight: normal;">All fled</span></span></i></div>
<i style="font-weight: normal;"><span style="font-size: x-large;"><div style="text-align: center;">
<i><span style="color: #666666; font-family: "times" , "times new roman" , serif;"><span style="font-family: "times new roman" , serif;">All done</span></span></i></div>
<span style="color: #666666; font-family: "times" , "times new roman" , serif;"><div style="text-align: center;">
<i><span style="color: #666666; font-family: "times" , "times new roman" , serif;"><span style="font-family: "times new roman" , serif;">So lift me on the pyre</span></span></i></div>
<div style="text-align: center;">
<i><span style="color: #666666; font-family: "times" , "times new roman" , serif;">The feast is over</span></i></div>
<div style="text-align: center;">
<i><span style="color: #666666; font-family: "times" , "times new roman" , serif;">and the lamp's </span></i></div>
<div style="text-align: center;">
<i><span style="color: #666666; font-family: "times" , "times new roman" , serif;">expired</span></i></div>
</span></span></i></h2>
<h2 style="text-align: center;">
<i><span style="color: #666666; font-family: "times" , "times new roman" , serif;"> </span></i></h2>
<div style="text-align: center;">
<i><span style="color: #666666; font-family: "times" , "times new roman" , serif;"><br /></span></i></div>
<div class="separator" style="clear: both; text-align: center;">
</div>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj7DSXRZe01EJUPM8tdLuSpAXhP-EwPtnvRMuq2KkX8-OOGBUhU-L6dz5MlkFXjSp43siVM2E985UCB2MqzkLskf2TzFhfinoK8j8zbk9Zaj6Sr3bsKQVM2k9_0Wx8OSptMCc2OjFQmDbY/s1600/2014-12-22+12.13.34.jpeg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj7DSXRZe01EJUPM8tdLuSpAXhP-EwPtnvRMuq2KkX8-OOGBUhU-L6dz5MlkFXjSp43siVM2E985UCB2MqzkLskf2TzFhfinoK8j8zbk9Zaj6Sr3bsKQVM2k9_0Wx8OSptMCc2OjFQmDbY/s640/2014-12-22+12.13.34.jpeg" width="480" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">March 8, 1998 - March 24, 2017</td></tr>
</tbody></table>
<h2 style="text-align: left;">
</h2>
<div style="text-align: center;">
<span style="font-family: "times new roman" , serif;"><br /></span></div>
<div style="text-align: justify;">
<span style="font-family: "times new roman" , serif;">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.</span></div>
</div>
<div dir="LTR" style="margin-bottom: 0in; text-align: left;">
<div style="text-align: justify;">
<br /></div>
</div>
<div dir="LTR" style="margin-bottom: 0in; text-align: left;">
<div style="text-align: justify;">
<span style="font-family: "times new roman" , serif;">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 </span><span style="font-family: "times new roman" , serif;">those last minutes there was no place anymore for lifesaving measures. It</span><span style="font-family: "times new roman" , serif;"> was time. The sense of the end weighed like a heavy curtain, stifling my thoughts, making my heart pound. </span></div>
</div>
<div dir="LTR" style="margin-bottom: 0in; text-align: left;">
<div style="text-align: justify;">
<br /></div>
</div>
<div dir="LTR" style="margin-bottom: 0in; text-align: left;">
<div style="text-align: justify;">
<span style="font-family: "times new roman" , serif;">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.</span></div>
<br />
<div style="text-align: justify;">
<span style="font-family: "times new roman" , serif;"><br /></span></div>
<div style="text-align: justify;">
<span style="font-family: "times new roman" , serif;"><br /></span></div>
</div>
<div dir="LTR" style="margin-bottom: 0in; text-align: left;">
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjlr9IuVPJq-jp3weYwpkhqoq7Ni8hAWKPAs44oYqkVyEoxeei53OzLWGHYxV-pNTqTZZSc7XG4AmeqW7gXQDbUXgYoDCy9Fuj1ZnRkkR28TIYb_n7gY7tdAnRie5m8dhtkwh-ZZh9EmTA/s1600/2017-03-18+10.50.10-Edit-Edit-001_1.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em; text-align: justify;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjlr9IuVPJq-jp3weYwpkhqoq7Ni8hAWKPAs44oYqkVyEoxeei53OzLWGHYxV-pNTqTZZSc7XG4AmeqW7gXQDbUXgYoDCy9Fuj1ZnRkkR28TIYb_n7gY7tdAnRie5m8dhtkwh-ZZh9EmTA/s400/2017-03-18+10.50.10-Edit-Edit-001_1.jpg" width="225" /></a></div>
</div>
<div dir="LTR" style="margin-bottom: 0in; text-align: left;">
<div style="text-align: justify;">
<span style="font-family: "times new roman" , serif;">Then, a moment, captured in this
picture that was taken less than a week before Segev passed, after a
<i>lifelong </i>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. </span></div>
<div style="text-align: justify;">
<span style="font-family: "times new roman" , serif;"><br /></span></div>
<div style="text-align: justify;">
<span style="font-family: "times new roman" , serif;">No more fighting Segev,
you have nothing to prove. We all bear witness to that. </span>
</div>
</div>
<div dir="LTR" style="margin-bottom: 0in; text-align: left;">
<div style="text-align: justify;">
<br /></div>
</div>
<div dir="LTR" style="margin-bottom: 0in; text-align: left;">
<div style="text-align: justify;">
<span style="font-family: "times new roman" , serif;">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. </span></div>
<div style="text-align: justify;">
<span style="font-family: "times new roman" , serif;">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.</span></div>
</div>
<div dir="LTR" style="margin-bottom: 0in; text-align: left;">
<div style="text-align: justify;">
<br /></div>
</div>
<div dir="LTR" style="margin-bottom: 0in; text-align: left;">
<div style="text-align: justify;">
<span style="font-family: "times new roman" , serif;">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.</span></div>
</div>
<div dir="LTR" style="margin-bottom: 0in; text-align: left;">
<div style="text-align: justify;">
<br /></div>
</div>
<div dir="LTR" style="margin-bottom: 0in; text-align: left;">
<div style="text-align: justify;">
<span style="font-family: "times new roman" , serif;">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 </span><span style="font-family: "times new roman" , serif;">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.</span></div>
<div style="text-align: justify;">
<span style="font-family: "times new roman" , serif;">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”. </span></div>
<div style="text-align: justify;">
<span style="font-family: "times new roman" , serif;">I could only vaguely
notice that he went outside, this quiet and gentle doctor, holding
back tears. </span></div>
</div>
<div dir="LTR" style="margin-bottom: 0in; text-align: left;">
<div style="text-align: justify;">
<br /></div>
</div>
<div style="text-align: justify;">
<br /></div>
<div dir="LTR" style="margin-bottom: 0in; text-align: left;">
<div style="text-align: justify;">
<span style="font-family: "times new roman" , serif;">I
washed Segev ever so gently, after the good </span><span style="font-family: "times new roman" , serif;">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. </span></div>
<div style="text-align: justify;">
<span style="font-family: "times new roman" , serif;">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.</span></div>
<span style="font-family: "times new roman" , serif;"><br /></span>
<span style="font-family: "times new roman" , serif;"><br /></span>
<span style="font-family: "times new roman" , serif;"><br /></span>
<span style="font-family: "times new roman" , serif;"><br /></span>
<br />
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<span style="font-family: "times new roman" , serif;"><br /></span>
<span style="font-family: "times new roman" , serif;"><br /></span>
<span style="font-family: "times new roman" , serif;"><br /></span>
<span style="font-family: "times new roman" , serif;"><br /></span>
<span style="font-family: "times new roman" , serif;"><br /></span>
<span style="font-family: "times new roman" , serif;"><br /></span></div>
Eric Fischerhttp://www.blogger.com/profile/02471331868560587898noreply@blogger.com11tag:blogger.com,1999:blog-5000267568708943345.post-59188933594983859432017-01-30T12:37:00.002+02:002017-01-30T12:39:07.489+02:00Collected works of poetry 2017<div style="background-color: white; color: #1d2129; font-family: "Helvetica Neue", Helvetica, Arial, sans-serif; font-size: 14px; margin-bottom: 6px;">
<div style="text-align: justify;">
I'd like to announce the publication of the latest edition of the Collected works of poetry.</div>
<div style="text-align: justify;">
It has been completely revised: loads of new material and many, many poems have been revisited for the first time since their original publication.</div>
<div style="text-align: justify;">
<br /></div>
<div style="text-align: justify;">
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 t<span class="text_exposed_show" style="display: inline; font-family: inherit;">he experiences and memories of the children and individuals who inspired me to write.</span></div>
</div>
<div class="text_exposed_show" style="background-color: white; color: #1d2129; display: inline; font-family: "Helvetica Neue", Helvetica, Arial, sans-serif; font-size: 14px;">
<div style="font-family: inherit; margin-bottom: 6px;">
Available on Amazon etc.<br />
(preferred venue: <a href="https://l.facebook.com/l.php?u=https%3A%2F%2Fwww.createspace.com%2F6852513&h=ATOJ63UxxENd0yAUw3C57Lm1u6XD8cL3F6V78oee2-uaSOKHGuKZukVvY--FYoAX613_OtYAOGsW8-mt3z0viR5WgyaMWd6vGDCsKDp6rL5wZfz7yyU9kKqyyGaiL_-94R8EEv8PK0xcacsOwYM&enc=AZO2T7_7hx1hpnpFkvcmbLn_RV2BwUjcK-jNJqwL1xYeoXPhPQ0DyNhKg93Qkha5AjMrA9wEr_eOc_Lu_iZ5soBOJ0nl7JLiajeGqtv-0ygJuwUrPI3_UKchWknpSkHhbPlvQtllXIEAEYJUINakOf7vdbG28vqhFQ46y2-_qcO27tIyzPD2MScgQeIZQ1_H1EEvHa4UQLPZ5K_Yj6VjG1Xa&s=1" rel="nofollow" style="color: #365899; cursor: pointer; font-family: inherit; text-decoration: none;" target="_blank">https://www.createspace.com/6852513</a> )</div>
<div style="font-family: inherit; margin-bottom: 6px;">
<br />
<span style="text-align: justify;">PLEASE SHARE TO SUPPORT US!</span></div>
<div class="separator" style="clear: both; text-align: center;">
</div>
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Eric Fischerhttp://www.blogger.com/profile/02471331868560587898noreply@blogger.com0tag:blogger.com,1999:blog-5000267568708943345.post-22441064247838286692016-12-28T22:43:00.000+02:002016-12-28T22:47:24.111+02:00MEMENTO TE AMARIBecause the air is heavy of late, I hold on to what is essential and real.<br />
<br />
<h2>
<i><span style="color: #999999; font-family: Times, Times New Roman, serif; font-weight: normal;">"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."</span></i></h2>
<div>
<span style="color: #999999; font-weight: normal;"><i> </i> </span><span style="font-weight: normal;">(from the dedication for his thirteenth birthday)</span></div>
<div>
<i><span style="font-weight: normal;"><br /></span></i></div>
<div>
<i><span style="font-weight: normal;"><br /></span></i></div>
<div>
<i><span style="font-weight: normal;"><br /></span></i></div>
<h2>
<i><span style="color: #999999;"><span style="font-family: Times, Times New Roman, serif; font-weight: normal;">As you were born, long and hard years.</span></span></i></h2>
<h2>
<span style="font-family: Times, Times New Roman, serif;"><i><span style="color: #999999;"><span style="font-weight: normal;">Provisioned with a mantle </span></span></i><i><span style="color: #999999;"><span style="font-weight: normal;">worn tightly;</span></span></i></span></h2>
<h2>
<span style="font-family: Times, Times New Roman, serif;"><i><span style="color: #999999;"><span style="font-weight: normal;">a solemn oath to keep this plight </span></span></i><i><span style="color: #999999;"><span style="font-weight: normal;">in dignity, </span></span></i></span></h2>
<h2>
<span style="font-family: Times, Times New Roman, serif;"><i><span style="color: #999999;"><span style="font-weight: normal;">the suffering minimal,</span></span></i><i><span style="color: #999999;"><span style="font-weight: normal;">the light shining.</span></span></i></span></h2>
<h2>
<span style="font-family: Times, Times New Roman, serif;"><i><span style="color: #999999;"><span style="font-weight: normal;">My struggles are as his breath and h</span></span></i><i><span style="color: #999999;"><span style="font-weight: normal;">is breath has been my joy:</span></span></i></span></h2>
<h2>
<i><span style="color: #999999;"><span style="font-family: Times, Times New Roman, serif; font-weight: normal;">a shell discarded </span></span></i></h2>
<h2>
<i><span style="color: #999999;"><span style="font-family: Times, Times New Roman, serif; font-weight: normal;">a new man born.</span></span></i></h2>
<h2>
<i><span style="color: #999999;"><span style="font-family: Times, Times New Roman, serif; font-weight: normal;">His heart beats without knowing,</span></span></i></h2>
<h2>
<i><span style="color: #999999;"><span style="font-family: Times, Times New Roman, serif; font-weight: normal;">the difference of life and death,</span></span></i></h2>
<h2>
<span style="font-family: Times, Times New Roman, serif;"><i><span style="color: #999999;"><span style="font-weight: normal;">the power to calm </span></span></i><i><span style="color: #999999;"><span style="font-weight: normal;">and secure </span></span></i><i><span style="color: #999999;"><span style="font-weight: normal;">ruling over all adversity,</span></span></i></span></h2>
<h2>
<i><span style="color: #999999;"><span style="font-family: Times, Times New Roman, serif; font-weight: normal;">which is love.</span></span></i></h2>
<div>
<i> </i> (poem based on the dedication to his twelfth birthday)</div>
<div>
<i><span style="font-weight: normal;"><br /></span></i></div>
Eric Fischerhttp://www.blogger.com/profile/02471331868560587898noreply@blogger.com2tag:blogger.com,1999:blog-5000267568708943345.post-73475340355640773412016-08-28T00:13:00.002+03:002016-11-10T09:43:50.009+02:00STILL NOT TIME STILL HERE, STILL HERE<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhWdGSPgXzhhcvuDuNPALPI2ET7ru4_xdHHYhkZvIFDHksUrSeaF_T8rsZ_lxuz3pbk4LBvMnVAA17LY2j8h9E0SfHp8POvD9B3FdDEXbvr8hbySM9tpj0SYCkVd9PoFaZ5dATobai7DbA/s1600/segev1.png" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="238" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhWdGSPgXzhhcvuDuNPALPI2ET7ru4_xdHHYhkZvIFDHksUrSeaF_T8rsZ_lxuz3pbk4LBvMnVAA17LY2j8h9E0SfHp8POvD9B3FdDEXbvr8hbySM9tpj0SYCkVd9PoFaZ5dATobai7DbA/s320/segev1.png" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">From long ago, a serenity long lost.</td></tr>
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<br />
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%.<br />
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<div style="text-align: justify;">
Hours where the fear was not just to make him breath but that the chest compressions wouldn't break his ribs. His throat was partially closed off making suctioning impossible. The administered steroids might help, but they would take time and presently he had been without sufficient oxygen for so long that damage is not just likely but a certainty. </div>
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<br /></div>
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There was a build up over the two previous nights and we all worked, myself and his mother without sleep, to keep him going. He made it through those nights but it left everyone on edge and under a heavy, somber mood. At four O'clock in the morning, yesterday, it slowly became clear that this was unmanageable, but I still wasn't ready to let my heart follow my mind and so continued. After another intense hour of compressions his oxygen level wouldn't budge from 62% and it took several more minutes beofre I slowly reached to turn off the pulseoximeter entirely, knowing that whatever reading it showed, nothing more could be done. It was completely and utterly out of my hands, perhaps for the first time ever. In that moment of silence only the humming of the oxygen compressor had something to say and I wondered if I should silence it as well.</div>
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<br /></div>
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He was well sedated. Though, as his mother pointed out his breathing was slow and very labored. She suggested we further increase the sedation so that he wouldn't struggle so much to breathe. With a sense of relief I quickly agreed, in my head, but as I actually responded to her I said, 'No, not now. Maybe later, but not now.' I sat with my son and spoke to him, of important things that we know but sometimes need to say aloud. I caressed him, kissed his hands and face and thought of the incredible journey we have had. I told him I was sorry it had to be this way and didn't know if he would somehow understand enough, from his own ability to make sense of things, pared as it was to a few basic perceptions, to forgive me, if ever he saw fit to place blame. I cried quietly. </div>
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I thought Segev's brother and sister should use this opportunity to say goodbye to their little brother and I woke them both. I lay on the couch, too emotional and exhausted to be deep in thought but still managing, 'this is it.' and then, 'How long will it take?' I fell asleep; an hour or two passed and I woke to hear his mother's excited voice: "He's up to 84%!" </div>
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Now Saturday, Segev has even managed to smile here and there. I'm giving him antibiotics even though the medical consensus is that it won't be of any benefit. Like the decision not to increase his sedation at a critical juncture, which could very well have further suppressed his breathing, I follow my intuition in all important matters. We are completely drained and still try to maintain Segev's always complex care but now, with a sense of urgency and heaviness that simply outdoes any other period over the entirety of the last eighteen years. We continue to move, stumbling perhaps blindly, bloodied, but still moving.</div>
Eric Fischerhttp://www.blogger.com/profile/02471331868560587898noreply@blogger.com3tag:blogger.com,1999:blog-5000267568708943345.post-72383221415205726082016-08-17T21:28:00.000+03:002016-11-10T09:37:56.975+02:00So many miles we have crossed.<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjSenf7DLF8a8OFiJ1JKL_eCg8YWleI97XwGgL7LalnNBeFQ7aLmhOZhz6e9PPAlsu1MwjsWnC1GjNDmTFl71dNhMms6UrjAcWbrVErdZIzXfyY5_Ip_fW5Q8xTO0TW5whs5AscZY4dNJc/s1600/gi565phy.gif" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="215" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjSenf7DLF8a8OFiJ1JKL_eCg8YWleI97XwGgL7LalnNBeFQ7aLmhOZhz6e9PPAlsu1MwjsWnC1GjNDmTFl71dNhMms6UrjAcWbrVErdZIzXfyY5_Ip_fW5Q8xTO0TW5whs5AscZY4dNJc/s400/gi565phy.gif" width="400" /></a></div>
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<div style="text-align: justify;">
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.</div>
</div>
Eric Fischerhttp://www.blogger.com/profile/02471331868560587898noreply@blogger.com1tag:blogger.com,1999:blog-5000267568708943345.post-46051373452057142282016-06-09T10:38:00.001+03:002016-11-10T09:43:35.455+02:00Reflections<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhchsLeECdwZt3NWS7iXWjcWj-dkPbgwOz9jIwuXg7NFskc_Aa6azEIP0h6YUcwSJYn4wCoUQRoxlhtOTFQHIZWBkT1-AqaKuvv-30MGZfu1VBl2oyRjo1UMnYx1CUHS3zlq4rXuIOwMQg/s1600/waterfall.gif" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="300" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhchsLeECdwZt3NWS7iXWjcWj-dkPbgwOz9jIwuXg7NFskc_Aa6azEIP0h6YUcwSJYn4wCoUQRoxlhtOTFQHIZWBkT1-AqaKuvv-30MGZfu1VBl2oyRjo1UMnYx1CUHS3zlq4rXuIOwMQg/s400/waterfall.gif" width="400" /></a></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="line-height: 107%;">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.</span><br />
<span style="line-height: 107%;">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.</span><br />
<a name='more'></a><span style="line-height: 107%;"><o:p></o:p></span></div>
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<span style="line-height: 107%;"><br /></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="line-height: 107%;">It has meant
that, despite best intentions, planning and tremendous effort, my other two
children’s needs were not met. This sounds as though my life has no balance,
and it may well be true. But balance in life has a lot to do with your own
perception. Balance is, by definition, never static. It is a balancing ‘act’.
And as such there have been tremendous swings of the pendulum, more extreme
motion than most encounter. Pain and suffering, even death, has a way of doing
that. Stoicism is great, if it comes to you naturally but I am an emotional
guy, prone to outbursts of joy and sadness, love and frustration. I fight
against the swinging of the pendulum, often with success. Sheer will can carry
you a long way towards your goals. When the goal is to create a
life-environment where happiness coincides with an unflinching look at reality
for your children, motivation never seemed lacking.<o:p></o:p></span></div>
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<span style="line-height: 107%;"><br /></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="line-height: 107%;">We go
through changes with age, no doubt, often under the influence of our
interactions but mostly due to our reactions that stem from who we are. Some
don’t need change or are impervious to it. We all like to think that we are
constantly learning. Only, the accumulation of information today is so
overwhelming that it passes for change. When you are challenged to the extreme
by your life-circumstances there exists the possibility that it won’t change
you at all. At least not on a conscious level. What I have seen is that change
is never what you expect it to be, if you are open to it. Sometimes we actually
retreat to a safe place, a known reaction, but that is not an authentic one. I
believe it is only when you are surprised by yourself, when you are taken down
a road that is unfamiliar to your psyche, that true change is happening.<o:p></o:p></span></div>
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<span style="line-height: 107%;"><br /></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="line-height: 107%;">Someone who
was very close to me more than once said, “Where is the Eric that I used to
know and fell in love with?” I’m here, I would say. The circumstances of my
life have not made me a different person but it has, through its extreme
nature, sharpened certain parts of me, uncovered parts through the process of
erosion, that even I could not know existed. Life is full of changing
experiences, some short, some long. Often we resist change and, as I said, we
retreat to reactions that are meant to keep us safe, away from becoming
something we don’t really trust, but all that really is, is fear of the unknown.
<o:p></o:p></span></div>
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<span style="line-height: 107%;"><br /></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="line-height: 107%;">What we
know, is safe, comfortable even. What we don’t know catches us off guard and
can send us reeling like a drunk through the streets. When my mother lay dying and I left her for the last time that’s what literally happened to me. I wasn’t
capable of walking in a straight line, I was punch-drunk from an overwhelming degree
of every emotion possible, happening at the same exact instant. I clung to a
wall so as not to fall down, and later wrote:<span style="font-size: 14pt;"><o:p></o:p></span></span></div>
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<br /></div>
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<br /></div>
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<span class="MsoSubtleEmphasis"><b><span style="font-family: "palatino linotype" , serif; font-size: 20.0pt; line-height: 115%;">The
end</span></b></span><span class="MsoBookTitle"><i><span style="font-family: "palatino linotype" , serif; font-size: 20.0pt; line-height: 115%;"> </span></i></span><span class="MsoBookTitle"><i><span style="font-family: "palatino linotype" , serif; font-size: 20pt; line-height: 115%;"><o:p></o:p></span></i></span></div>
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<br /></div>
<div class="MsoNormal" style="line-height: 115%; margin: 0in 4.15pt 8pt 1in; text-align: justify;">
<i><span style="font-family: "palatino linotype" , serif; font-size: 20.0pt; line-height: 115%;">Clutching
the wall, <o:p></o:p></span></i></div>
<div class="MsoNormal" style="line-height: 115%; margin: 0in 4.15pt 8pt 1in; text-align: justify;">
<i><span style="font-family: "palatino linotype" , serif; font-size: 20.0pt; line-height: 115%;">as
all hope leaves me, <o:p></o:p></span></i></div>
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<i><span style="font-family: "palatino linotype" , serif; font-size: 20.0pt; line-height: 115%;">not
to tumble onto the street, <o:p></o:p></span></i></div>
<div class="MsoNormal" style="line-height: 115%; margin: 0in 4.15pt 8pt 1in; text-align: justify;">
<i><span style="font-family: "palatino linotype" , serif; font-size: 20.0pt; line-height: 115%;">but
trembling, <o:p></o:p></span></i></div>
<div class="MsoNormal" style="line-height: 115%; margin: 0in 4.15pt 8pt 1in; text-align: justify;">
<i><span style="font-family: "palatino linotype" , serif; font-size: 20.0pt; line-height: 115%;">onto
my knees.<o:p></o:p></span></i></div>
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<i><span style="font-family: "palatino linotype" , serif; font-size: 20.0pt; line-height: 115%;">Where
wet cobblestones frame my anguish, <o:p></o:p></span></i></div>
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<i><span style="font-family: "palatino linotype" , serif; font-size: 20.0pt; line-height: 115%;">my
deliberate crime of absence, <o:p></o:p></span></i></div>
<div class="MsoNormal" style="line-height: 115%; margin: 0in 4.15pt 8pt 1in; text-align: justify;">
<i><span style="font-family: "palatino linotype" , serif; font-size: 20.0pt; line-height: 115%;">with
just punishment,<o:p></o:p></span></i></div>
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<i><span style="font-family: "palatino linotype" , serif; font-size: 20.0pt; line-height: 115%;">that
relishes</span></i><span dir="RTL"></span><span dir="RTL"></span><i><span dir="RTL" style="font-family: "arial" , sans-serif; font-size: 20.0pt; line-height: 115%;"><span dir="RTL"></span><span dir="RTL"></span> </span></i><i><span style="font-family: "palatino linotype" , serif; font-size: 20.0pt; line-height: 115%;">not only love <o:p></o:p></span></i></div>
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<i><span style="font-family: "palatino linotype" , serif; font-size: 20.0pt; line-height: 115%;">but
rather carelessly, <o:p></o:p></span></i></div>
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<i><span style="font-family: "palatino linotype" , serif; font-size: 20.0pt; line-height: 115%;">life.<o:p></o:p></span></i></div>
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<br /></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="line-height: 107%;">There is a sense of quasi-hope in that
last line. Life is fickle, not fair by any stretch of the imagination. If you
have religion you possess a ready-made framework that helps you to deal with
the unimaginable. You still struggle, of course, but from my personal view you
need to learn what your framework really consists of and see how it <i>isn’t</i>
adjusting to these traumatic experiences, to move forward. If I am grateful for
hardships it is lies in the fact that it brings you to the boundaries of who
you are, you see yourself, no longer through a ‘mirror darkly’. Moments of
clarity arise which can be seen as religious epiphanies, without the religious
framework, but often with an expression of religious language, because those
phrases are beautiful poetry and thus, timeless truths.<o:p></o:p></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="line-height: 107%;"><br /></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="line-height: 107%;">When you go beyond your boundaries
you, ‘lose it’. And I am no stranger to those experiences. Some get back on
track, find the path again and maintain composure. Others wander off into the
wilderness, never to be seen again. G. Jurgensen, author of ‘The disappearance’,
a haunting book wherein she shares the loss of her two daughters,
wrote of me, “His way is more that of an explorer than of pioneer. For reading
his poems conveys the feeling that he is driven by the discovery itself…” I’m not happy with such a description. I
would rather be a yes-man. The one who follows orders, is told what to do. But
my experience in caring for my son taught me that there are areas wherein you
must act as an explorer, covering new ground because, quite simply, no one is
there to lead you, to tell you how to behave or even how to approach an
obstacle. Your child’s life hangs in the balance, but at the same time you are
carrying him with you, piggyback, through treacherous terrain. Terrain that you
are not a qualified guide for. It comes down to an experience of raw survival.
I didn’t know this going in. I thought, with my own meagre medical training,
the professionals will know what to do. We’ll figure this out. Things will be
OK. So, let’s start! Let’s start looking for solutions. A friend once told me, “Yes,
that’s the problem with men, they can’t accept the notion that they can’t solve
a problem.” Sure, if you get stuck in that place of frustration, the feeling of
helplessness that comes with not moving toward resolution, then you won’t be
able to deal with the real issue at hand. But the solution is easy. You do
accept that you can’t solve the problem, <i>in the way that you are trying to
solve it. </i> But a solution exists, a
way to help exists. <o:p></o:p></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="line-height: 107%;"><br /></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="line-height: 107%;">When I visited my mother on her
deathbed in Holland, my brother was also there. He saw me do what I do best; little adjustments to her position, pressing on areas to alleviate pain,
spraying moisture into her parched mouth, supporting her chin so she could
breath more deeply and paying attention to oxygen levels. All little things
which came naturally. He felt bad about not being able to <i>do</i> anything, just
standing there. So I told him that he is <i>being</i> there, with his mother.
For a brief moment, until she lapsed into unconsciousness, until her light
finally went out, she was able to acknowledge his presence, as she had done
with me the night previous. That was enough. The connection had been made and
it was enough. We are never doing nothing, it’s just that the fear of not being
effective in a situation, such as I experience daily with my son, can be
overwhelming. A whirlwind of doubt is raised as we feel incapacitated by our
emotions. <o:p></o:p></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="line-height: 107%;"><br /></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="line-height: 107%;">For some it comes naturally, for
others with experience, that we can find in those moments a degree of focus,
slowly shining its light from what I call, a ‘well of intent’. And all of this
is possible if we can listen to the voice that our hearts sing continuously in
the background. When we let go of fear, by delving deep into ourselves, we can
hear that soft singing. The clutter of distractions that infest our minds, the
dead-end paths that we let our minds go down knowing, knowing that it leads us
nowhere useful, take us from the grace of our own hearts. <o:p></o:p></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="line-height: 107%;"><br /></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="line-height: 107%;">None of this lessens the knot I feel in
my stomach each and every time my son is suffering; after eighteen years it has
not relinquished even a little bit of its bitter sting. I believe there is
balance to be found though, in the smiles that can be brought to his face,
merely by being present, because he has understood with experience, that the
intent is there. That all the effort has created a bond, which always existed,
in its entirety, in full force, from the very beginning and which time has
allowed to mature, to express, to go out into the dense unknown forest and
finally return to its natural home, our hearts.<span style="font-size: 14pt;"><o:p></o:p></span></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-size: 14.0pt; line-height: 107%; mso-bidi-font-family: Calibri; mso-bidi-theme-font: minor-latin;"><br /></span></div>
<div class="MsoNormal" style="text-align: justify;">
<br /></div>
<br />
<div class="MsoNormal" style="text-align: justify;">
<br /></div>
Eric Fischerhttp://www.blogger.com/profile/02471331868560587898noreply@blogger.com1tag:blogger.com,1999:blog-5000267568708943345.post-62294949846488536622016-05-26T11:16:00.000+03:002016-11-10T09:42:02.272+02:00Thoughts, after fifty years on this earth.<br />
<div class="MsoNormal" style="text-align: justify;">
<br /></div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhp3Z_1nT8aJ4N3Qsimst0gLH4TU4Yg9MYMTuhlJ6c16VDFJs9tGhCNLM-mQGiTSYdz3iiZuyavh6hH6bC0wjdPiB3LcBq684VqxpJWLIHb-jEX-N17q6QTzT9mgVAW-eXYHhqRDs5NaI0/s1600/tumblr_lqnedrlCAU1qa3x2ho1_500.gif" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="222" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhp3Z_1nT8aJ4N3Qsimst0gLH4TU4Yg9MYMTuhlJ6c16VDFJs9tGhCNLM-mQGiTSYdz3iiZuyavh6hH6bC0wjdPiB3LcBq684VqxpJWLIHb-jEX-N17q6QTzT9mgVAW-eXYHhqRDs5NaI0/s400/tumblr_lqnedrlCAU1qa3x2ho1_500.gif" width="400" /></a></div>
<span style="text-align: justify;">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 </span><i style="text-align: justify;">how</i><span style="text-align: justify;"> 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.</span><br />
<div class="MsoNormal" style="text-align: justify;">
<o:p></o:p></div>
<div class="MsoNormal" style="text-align: justify;">
But <i>stories</i> 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.<br />
<a name='more'></a><o:p></o:p></div>
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<br /></div>
<div class="MsoNormal" style="text-align: justify;">
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.<o:p></o:p></div>
<div class="MsoNormal" style="text-align: justify;">
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.<o:p></o:p></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhvR9Gia6RDM-L14935eIe8yeh2Jb2grtmSaoIa3zXa4dD7I1-aNPxYBrNPyoa-Y2Y5Auqv5FK8bZ3t1pmgb-27CTZCHLbZp3EUj7UIMh6VXXeHKsk22G7AKWdDYWCoOI8bTIf1X-1SU6w/s1600/tumblr_n3bjblxjD61t96jpzo1_500.gif" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="352" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhvR9Gia6RDM-L14935eIe8yeh2Jb2grtmSaoIa3zXa4dD7I1-aNPxYBrNPyoa-Y2Y5Auqv5FK8bZ3t1pmgb-27CTZCHLbZp3EUj7UIMh6VXXeHKsk22G7AKWdDYWCoOI8bTIf1X-1SU6w/s640/tumblr_n3bjblxjD61t96jpzo1_500.gif" width="640" /></a></div>
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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.<o:p></o:p></div>
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In 1998 a <i>force majeure</i> 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 <i>find</i> solutions that give both
longevity and quality of life.<o:p></o:p></div>
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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 <i>natural</i> comas he has faded
into too often) and the situation doesn’t look good. <o:p></o:p></div>
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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.<o:p></o:p></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg_UglVmoNMvLi1ZJyRMmK_u5_Aj8OkxqevYvxcyP9QxBKNVBkz7trLpkX15z296ccrcFcfwavgSpw8iiuQaLGMNAd2E-ZQBoWc0l2wJhmUvPEriD4wvU_oVIvo5Wzi1gQO4xDrsGHxdfI/s1600/tumblr_m8cxrlGDBo1qg39ewo1_500.gif" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="353" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg_UglVmoNMvLi1ZJyRMmK_u5_Aj8OkxqevYvxcyP9QxBKNVBkz7trLpkX15z296ccrcFcfwavgSpw8iiuQaLGMNAd2E-ZQBoWc0l2wJhmUvPEriD4wvU_oVIvo5Wzi1gQO4xDrsGHxdfI/s640/tumblr_m8cxrlGDBo1qg39ewo1_500.gif" width="640" /></a></div>
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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. <o:p></o:p></div>
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<div class="MsoNormal" style="text-align: justify;">
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.<o:p></o:p></div>
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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.<u><o:p></o:p></u></div>
Eric Fischerhttp://www.blogger.com/profile/02471331868560587898noreply@blogger.com11tag:blogger.com,1999:blog-5000267568708943345.post-30307420014070432032016-05-05T13:41:00.001+03:002016-11-10T09:55:23.721+02:00The aging caregiver<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhbSEW8nJjcOWG9y9lrOpq0520tp4nY0YY9LiTto3rR9uatnEvXA5Y-FelJpSYkP40Lm_KS02_pyoXpPC9cuPQI_ePTyqBXzvnCN4CoeWNZy7D6jNiWetEUV4aLkkxny6d5Ub_nTrMxVmU/s1600/4c0d58103d0ca424c9f1a70eb8e75670.gif" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhbSEW8nJjcOWG9y9lrOpq0520tp4nY0YY9LiTto3rR9uatnEvXA5Y-FelJpSYkP40Lm_KS02_pyoXpPC9cuPQI_ePTyqBXzvnCN4CoeWNZy7D6jNiWetEUV4aLkkxny6d5Ub_nTrMxVmU/s400/4c0d58103d0ca424c9f1a70eb8e75670.gif" width="400" /></a></div>
<div style="text-align: justify;">
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.</div>
<div class="MsoNormal">
<div style="text-align: justify;">
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.</div>
<a name='more'></a></div>
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The other thing that the physician said, more a rhetorical
question, was “You know that what you are doing is utterly exceptional, right?”
He continued, “The way you, his mother and his brother and sister rally around
Segev is amazing. I’ve never seen anything like it.”</div>
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<br /></div>
<div class="MsoNormal">
Since his birth, in order to give my son the full attention
he deserves has meant cutting my work week from six days to just two. And consciously
working to create an environment where his brother and sister became competent
in providing practical assistance for all of the varied and complicated issues that
are dealt with throughout the day and night, was no small effort. But this has
paid dividends tenfold so that Segev is still with us today. Whether simply
providing suction or venting his stomach or, as the case was in March, physically
holding his airway open while, gutted with fatigue, I had to calculate the
proper dosage of sedative to be given subcutaneously, they are there for their
brother.</div>
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<div class="MsoNormal">
Being able to work only two days a week in my profession as physical
therapist, with some degree of irony as a specialist in pain management, very
quickly brought us to the poverty level. At that point, beyond what life with
my son brings, be it chronic sleep deprivation, back issues, tendinitis, memory
loss and clinical depression, your world becomes even smaller. And yes, quite a
bit more simple. There are no extracurricular activities for the kids, no new
shoes, dinners out or, as often is the case, birthday presents. With time those
things cease to matter. Still, while able to provide a roof over our heads, the sting
of not giving your kids a ‘regular’ upbringing becomes surprisingly more
potent. They have though, become used to it; it is their ‘normal’. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
With his worsening condition over the years, punctuated by
an endless nightmare of life-threatening crises, there are no trips together
and even walks around the village are out of the question. With Segev requiring
some kind of action to be taken every 30 minutes, rest is impossible. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Obviously this obsessive behavior of mine has had
negative results as well. The stress everyone lives with is through the roof.
Our lives have been put on hold, though I’ve always pressed my other two
children to forge ahead, study, go out and pursue their dreams and they are in
the early stages of doing so. Perhaps a little later than others, but what
matters is that they have <i>their </i>dreams and thankfully tremendous talent as
well. None of that has been completely stymied, for which I am ever so
grateful. Perhaps the perseverance present in our lives has even given them a
strength that otherwise would be lacking. I can only hope this is true.</div>
Eric Fischerhttp://www.blogger.com/profile/02471331868560587898noreply@blogger.com1tag:blogger.com,1999:blog-5000267568708943345.post-11026291535288308232016-02-08T13:50:00.002+02:002016-12-29T10:07:44.742+02:00The Gentle Savage<div style="text-align: justify;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiQv5sdyYwmh-MiE4uKkbeDjtY3ZPUWp6oYi7n3n01EYd11IYO28iz1tfAc0vlWMNKdwm5sGiGa2TsYF-D7yydjpNgYkD5TOH3goqqWPBrb1tAcv-v72nnd0SxwYHnq3MHrm17ROAhlM1Y/s1600/PhotoFunia-Typewriter.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiQv5sdyYwmh-MiE4uKkbeDjtY3ZPUWp6oYi7n3n01EYd11IYO28iz1tfAc0vlWMNKdwm5sGiGa2TsYF-D7yydjpNgYkD5TOH3goqqWPBrb1tAcv-v72nnd0SxwYHnq3MHrm17ROAhlM1Y/s320/PhotoFunia-Typewriter.jpg" width="320" /></a>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.</div>
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<br /></div>
<div style="text-align: justify;">
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.</div>
<div style="text-align: justify;">
<br /></div>
<div style="text-align: justify;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhXg18lXVs10wIN6Rlkkap7YxWU9kSFO2DfUBkg6Juu1WS9kYy6MzJYbN72QInaIRoE7OdZgzbCkc2lctzlCHfeQiNuFte32wRtP7l_3CFXeSRGOD8A8sUKHNvMjEunG0pNkvDBReSKOF0/s1600/%2521cid_ii_14ad056331378a4d-001.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhXg18lXVs10wIN6Rlkkap7YxWU9kSFO2DfUBkg6Juu1WS9kYy6MzJYbN72QInaIRoE7OdZgzbCkc2lctzlCHfeQiNuFte32wRtP7l_3CFXeSRGOD8A8sUKHNvMjEunG0pNkvDBReSKOF0/s320/%2521cid_ii_14ad056331378a4d-001.jpg" width="320" /></a>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. </div>
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<br /></div>
<div style="text-align: justify;">
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.</div>
<div style="text-align: justify;">
<br /></div>
<div style="text-align: justify;">
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.</div>
<br />
<br />Eric Fischerhttp://www.blogger.com/profile/02471331868560587898noreply@blogger.com0tag:blogger.com,1999:blog-5000267568708943345.post-77965337026045213912016-01-16T12:01:00.000+02:002016-11-10T09:45:40.186+02:00raw update: nothing is the same<div style="text-align: justify;">
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: left; text-align: left;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgaNoiIQYxVBpvAaqlGw-mAnodQJwSJgV8dXuf_-mb42rxY4BVw3Fdz2lQcj6UOmbLsyqvkEZmvoc671uyWHKhApU133y9PNByq2a8nf6B4KgSwsadTkO3Oraryi96RE6EWg44iQDd4r3s/s1600/2016-01-05+19.00.41.jpg" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgaNoiIQYxVBpvAaqlGw-mAnodQJwSJgV8dXuf_-mb42rxY4BVw3Fdz2lQcj6UOmbLsyqvkEZmvoc671uyWHKhApU133y9PNByq2a8nf6B4KgSwsadTkO3Oraryi96RE6EWg44iQDd4r3s/s400/2016-01-05+19.00.41.jpg" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">January 5th</td></tr>
</tbody></table>
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.</div>
<div style="text-align: justify;">
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.<br />
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The return of double pneumonia, (which had been already been treated mid december) is exacerbated by the drying and cough suppressant effect of the opiate. Less coughing means the excessive production of phlegm remains in his lungs, lowering oxygen levels despite supplementation 24/7. His seizures are through the roof. This morning he once again entered status epilepticus (a life threatening condition where the seizures simply won't stop) and I resorted to sedating him with subcutaneous injections of Midolam (used as general anesthesia in surgery). It barely did the trick even after repeated use. </div>
<div style="text-align: justify;">
We've been fighting to raise his oxygen levels since yesterday afternoon, with little to show for it. He has GI bleeding which is being treated. Only one lung functions and it too is becoming tired. But yes, he has much less pain. </div>
<div style="text-align: justify;">
Sleep comes in fits and starts as I launch myself from bed every twenty minutes or so, awakened by the sound of the oxygen alarm or the sound of him seizing. His upper airway is collapsing and he stops breathing every so often until I pull his lower jaw forward to allow air into his lungs. Even then his oxygen saturation remains low. His ability to regulate his body temperature began failing a few months ago. His skin is burning hot but the core temperature is steady. He's drenched in sweat most of the time despite fever medication thrice daily. His bladder doesn't empty and I resort to manual pressure but this only helps when he is conscious. The last time he smiled was ten days ago, maybe more.</div>
<div style="text-align: justify;">
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<div style="text-align: justify;">
<br /></div>
<div style="text-align: justify;">
For the past 18 years I've only worked two days a week, the rest caring for Segev. I feel crushed under the strain of providing care and pain management to my patients while suffering further from my own health issues, once again nearly collapsing to the floor from both physical exhaustion and chaotic emotional state...</div>
<div style="text-align: justify;">
<br /></div>
<div style="text-align: justify;">
How, under an <i>even more complicated regimen... </i> </div>
<div style="text-align: justify;">
<br /></div>
<div style="text-align: justify;">
We discuss the options; a tracheotomy to help with the increasing upper
airway constriction. The downside is his slim chance of surviving
surgery and the inevitability of being on a ventilator if he does. The
ventilator might help him, giving his body a reprieve from the effort of
breathing, since over the last two weeks he is mostly dependent on
'abdominal breathing'. Imagine that every breath you took, every single
one, was as difficult as sucking mashed potatoes through a straw. Now
add all the other problems. But a ventilator (if we were ever to get out
of the hospital) in my son's unstable condition, presents its own
difficulties and drawbacks. Whether infection or him possibly ripping it
out of his throat during a violent myoclonic seizure, to the technical
issues of making adjustments to the ventilator itself when the
conditions inside of his lungs, where the altered biomechanics and
severe infection will have you chasing your tail every minute of each
day, appears an even darker path. </div>
<div style="text-align: justify;">
<br /></div>
<div style="text-align: justify;">
... all options have always been openly discussed and decisions are formed in consensus, each adding their own perspective and concerns, while our beautiful little man sits in his chair, oblivious, each slow breath counted.</div>
<div style="text-align: justify;">
<br /></div>
<div style="text-align: justify;">
I admit to myself that I am less capable. Segev's brother and sister are rallying, as always, and I simply could
not do without them. By myself, stumbling dizzy from bed to grab the suction
catheter or grasp his flailing arms as he seizes, continuing throughout
the night with <i>interpulmonary percussive ventilation, </i>nebulizer
inhalation, respiratory physiotherapy and administering sedation that
further suppresses his breathing gives
diminishing returns. And now we find ourselves in a maelstrom of confusion. The complexity, the interactions. Because you simply <i>cannot</i> know.</div>
<div style="text-align: justify;">
<br /></div>
<div style="text-align: justify;">
From the corner of my eye I can see my kids struggling under it all and I think to myself, will the good also be remembered? Will this give them tools few have, or break off pieces never to be found again? What I do know is, I am grateful and we cannot navigate any better than we have done.</div>
<div style="text-align: justify;">
<br /></div>
<div style="text-align: justify;">
The focus now is to make the best decisions, or more precisely, to live with the consequences.</div>
Eric Fischerhttp://www.blogger.com/profile/02471331868560587898noreply@blogger.com2tag:blogger.com,1999:blog-5000267568708943345.post-76696626575250824412016-01-09T11:59:00.002+02:002016-11-10T09:47:30.771+02:00UPDATE<div data-contents="true">
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjETm0Y9pyZVk5LN4vhDpGC1m6VZL-xGa2QoNln5q1cAfCW-CxoWr7T6Cz-E-Oe7vSORiOv_-n1tgFkItU0tiE0srGqbQVVL9P3M7LAZ_nFe59ENxdevPN6tWw-EQn6PqqtrHdo1YEvNnU/s1600/tumblr_n7a4mgHQpj1scygh3o1_500.gif" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="166" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjETm0Y9pyZVk5LN4vhDpGC1m6VZL-xGa2QoNln5q1cAfCW-CxoWr7T6Cz-E-Oe7vSORiOv_-n1tgFkItU0tiE0srGqbQVVL9P3M7LAZ_nFe59ENxdevPN6tWw-EQn6PqqtrHdo1YEvNnU/s400/tumblr_n7a4mgHQpj1scygh3o1_500.gif" width="400" /> </a></div>
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<span data-offset-key="ehjl7-0-0"><span data-text="true">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. </span></span></div>
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<span data-offset-key="ahkue-0-0"><span data-text="true">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. </span></span></div>
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<span data-offset-key="aqolh-0-0"><span data-text="true">After one, your so glad it's over, you forgive everything and bask in the calm. But when it comes again and again, and again you become frantic. You give more THC but it is without effect. Then come the extra doses of Clonazepam. And again. And again. Still with no effect. You try Diastat. Finally, emotionally raw, shaking, you see some improvement. The seizures have stopped, after hours of hurt.</span></span></div>
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<span data-offset-key="97lil-0-0"><span data-text="true">Now the differential diagnosis: is it a side effect of the opiates? Too much CBD? Pressure on the spinal nerves overloading his system yet again. These are important since a decision has to be made, what to do to stop the cycle. </span></span></div>
<div class="_45m_ _2vxa" data-block="true" data-offset-key="1f9di-0-0">
<span data-offset-key="1f9di-0-0"><span data-text="true">It's time to move on to the next problem; 18 hours have passed and he hasn't passed any urine. You palpate and feel his distended bladder pressing against his abdomen. You press and massage, trying to wake him so that he can be aware of the pressure and maybe, just maybe he'll be able to relax the sphincter and pee.</span></span></div>
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<span data-offset-key="394jb-0-0"><span data-text="true">It's two thirty in the morning and you've been working to stimulate his bladder for two and a half hours. But he won't react, even to pain stimulus. Oblivious, he lies on the couch bathed in sweat, your hands probing, cajoling, telling him ten thousand times, 'Segev you need to pee'. </span></span></div>
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<span data-offset-key="dfd5l-0-0"><span data-text="true">Everyone is called, his sister and mother come over, to help and also make sure I'm thinking clearly. Everyone agrees this is all the result of a severe pneumonia. You bring him, with your own twisted and sprained back, to the bath chair and dowse him with warm and cool water. Still nothing. It's three thirty in the morning and finally he pees, nearly twenty four hours since the last time.</span></span></div>
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<span data-offset-key="9qab9-0-0"><span data-text="true">A sigh of relief. You continue the nebulizer therapy, the Inter Percussive Ventilation and the chest physio throughout. His oxygen saturation finally stabilizes. At four you climb into bed, the monitor beeping softly next to you and you fall asleep looking at your son's labored breathing an arm's span away.</span></span></div>
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<span data-offset-key="2vavc-0-0"><span data-text="true">Then at six O'clock the seizures start again. More diastat, more clonazepam. But you know it won't be enough. The seizures are no longer seperated by an hour or even a few minutes. He's spewing phlegm with each forced breath. The seizures, massive myoclonic-tonics, turn his lips blue despite the oxygen. They are continuous now, he can't catch his breath. </span></span></div>
<div class="_45m_ _2vxa" data-block="true" data-offset-key="5qnad-0-0">
<span data-offset-key="5qnad-0-0"><span data-text="true">A phone call to the hospice physician means help is en route. Segev enters 'silent status', he's still seizing but you can't see it unless you know what signs to look for. Another hour before the doctor, out jogging when you caught him, will arrive. </span></span></div>
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<span data-offset-key="53cs4-0-0"><span data-text="true">Subcutaneous midazolam is injected and we wait. Another dose and another 8 minute wait to let it seep into his blood stream. Segev's eyes are moving a little less randomly, he is coming out of status. Antibiotics are administered. Hopefully the antibiotics will work. The twitching won't stop until his lungs start to clear over the course of a few days.The seizures, the worst we've seen in many years, should follow suit.</span></span></div>
</div>
Eric Fischerhttp://www.blogger.com/profile/02471331868560587898noreply@blogger.com1tag:blogger.com,1999:blog-5000267568708943345.post-15293422769148568112016-01-07T09:50:00.001+02:002016-11-10T09:48:04.068+02:00I, the aging caregiver: Introduction<!--[if gte mso 9]><xml>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi6nq1rPSAdDOkq7q0u8Tv68Y3Sfmc7BBKWupqyz7wa71f6NxA0q7AdkPRO6Oyf29dbRATkleXkXC1Nt0axLl3jGGtWoZ4oWtuF2X44rkd51-0_BD-Re-VcOYb9d8GV219R3DORDKixe3s/s1600/giph32y.gif" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="377" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi6nq1rPSAdDOkq7q0u8Tv68Y3Sfmc7BBKWupqyz7wa71f6NxA0q7AdkPRO6Oyf29dbRATkleXkXC1Nt0axLl3jGGtWoZ4oWtuF2X44rkd51-0_BD-Re-VcOYb9d8GV219R3DORDKixe3s/s400/giph32y.gif" width="400" /></a><br />
<div style="text-align: justify;">
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. </div>
</div>
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<br /></div>
</div>
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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. </div>
<a name='more'></a></div>
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</div>
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You’re not supposed to have regrets, so they say, and while
hindsight <i>is </i>useful as it can teach us about the future, I wish it could
have been different. Now, that doesn’t matter anymore. Now each day the wear
and tear on my body tells me, you gave it your all. I find solace in that,
where a few short years ago, I couldn’t. The only thing that mattered was
making sure my son was comfortable for the next few hours and those few hours
would build up to form an unbroken chain until we reached that mythical goal
where he felt comfortable, happy, protected for <i>most</i> of the time. </div>
<div class="MsoNormal" style="text-align: justify;">
<br /></div>
<div class="MsoNormal" style="text-align: justify;">
This life though, with a fragile child who was given no
chance to live, is not a story of continuity. Not a race to the finish line in
a sports car. More like a leisurely drive through the country side in a broken
down jalopy and you have no real idea of where you are headed. You learn one
thing for certain: if you put it in your mind to reach a specific destination, you
will never arrive there.</div>
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<br /></div>
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It appears you can strategize, and you should, but you can’t
plan. You react to situations and your ability to preempt will bring momentary
triumphs, but any preconceptions about how your life with your children will
unfold, is soon exposed for the fallacy it is. </div>
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<br /></div>
<div class="MsoNormal" style="text-align: justify;">
You readjust, you compensate and as far as the outside world
is concerned, you put a smile on your face. You accept. You may balk at this
idea; the world should know that your child is suffering, but no one is interested
in that. They want results, they want positivity. Sometimes you care what they
think and on occasion you think, ‘to hell with them’. You have to be true to
yourself and to your mission, to provide loving care, a stable environment,
that safety for your child to get the most out of a short and hurtful life. In
short, you offer them protection. That becomes your meaning. Your child’s
meaning lies within showing you what purity is. What the basic element of a
profound life is, that unconditional love. How far you take it, is entirely up
to you. </div>
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<br /></div>
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Obviously, the more you go to extreme lengths the more you’ll
feel it, as time carries on. You learn to find joy, continually, repeatedly in
simple things exactly like when a baby smiles for the first time, coos for the
first time, giggles for the first time. You find the ability to remain
surprised, the ability to remain in awe and bask in happiness each time
something good happens. You become a little bit like your child, discovering
that happiness afresh, each and every day, as though time has wrapped you in a cocoon,
a stateless mind where time doesn’t exist.</div>
Eric Fischerhttp://www.blogger.com/profile/02471331868560587898noreply@blogger.com1tag:blogger.com,1999:blog-5000267568708943345.post-79857181954430942222015-12-28T19:36:00.001+02:002016-11-10T09:51:21.870+02:00 I, The Aging caregiver: prelude<div style="margin-bottom: 0in;">
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh4rUJx42vemKthZoKQxBWJaPnTRzcDegxUSBZDmJI3pRrXPG9gNHp-7EKLn3uxk9A_kle_iNdvgESErofmJZRa9cxBjfjhJNsw6yztfeXhdavhVszaDtsnF3VGM19olRNBNNHAF6pe7Yk/s1600/Roy+Batty.gif" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="177" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh4rUJx42vemKthZoKQxBWJaPnTRzcDegxUSBZDmJI3pRrXPG9gNHp-7EKLn3uxk9A_kle_iNdvgESErofmJZRa9cxBjfjhJNsw6yztfeXhdavhVszaDtsnF3VGM19olRNBNNHAF6pe7Yk/s400/Roy+Batty.gif" width="400" /></a></div>
What's it like to get old?<br />
<br />
'I know, I know' .</div>
<div style="margin-bottom: 0in;">
They pass you in the street,
preoccupied and muttering.
</div>
<div style="margin-bottom: 0in;">
Unkempt, you see and think, 'They
should get their life together.'</div>
<div style="margin-bottom: 0in;">
But they don't roam the streets, or ask
for a tuppence,</div>
<div style="margin-bottom: 0in;">
they are kept in their homes for the
most part.<br />
<a name='more'></a></div>
<div style="margin-bottom: 0in;">
They are prisoners of their own
desires,
</div>
<div style="margin-bottom: 0in;">
to see their children live.</div>
<div style="margin-bottom: 0in;">
Not down the street playing, being
boisterous.</div>
<div style="margin-bottom: 0in;">
Not in school with grades to make them
proud.</div>
<div style="margin-bottom: 0in;">
<br /></div>
<div style="margin-bottom: 0in;">
<i>They worry about their children, but
doesn't everyone?</i></div>
<div style="margin-bottom: 0in;">
<i>Machines that make their child's life
complete,</i></div>
<div style="margin-bottom: 0in;">
<i>defeat but a mere morsel,</i></div>
<div style="margin-bottom: 0in;">
<i>caviar</i></div>
<div style="margin-bottom: 0in;">
<i>when it is death that you must cheat.</i></div>
<div style="margin-bottom: 0in;">
<br /></div>
<div style="margin-bottom: 0in;">
Those parents, in their little homes,
their little worlds,</div>
<div style="margin-bottom: 0in;">
their little children cut to the quick.</div>
<div class="separator" style="clear: both; text-align: center;">
</div>
<div class="separator" style="clear: both; text-align: center;">
<br /></div>
<div style="margin-bottom: 0in;">
They sing songs their children cannot
understand</div>
<div style="margin-bottom: 0in;">
beneath the fog of copious drugs that
numb, that heal and that sicken.</div>
<div style="margin-bottom: 0in;">
<br /></div>
<div style="margin-bottom: 0in;">
They don't ask for much, these strange
parents with their</div>
<div style="margin-bottom: 0in;">
strange children whom you never see.</div>
<div style="margin-bottom: 0in;">
'There must be something wrong with
them' and you hurry past</div>
<div style="margin-bottom: 0in;">
their livingroom window. You see their shattered
remains.<br />
You move along
because it might be contagious. </div>
<div style="margin-bottom: 0in;">
The sorrow, anguish, dashed hopes,
crushed dreams, creaking bones.</div>
<div style="margin-bottom: 0in;">
The wear and tear of the caregiving
parent. You can hear them scream
</div>
<div style="margin-bottom: 0in;">
inside their heads, 'Good morning' they
say, as you pass them.</div>
<div style="margin-bottom: 0in;">
Didn't you hear the scream?</div>
<div style="margin-bottom: 0in;">
<br /></div>
<div style="margin-bottom: 0in;">
I'd lock them up, if I heard their
screams. Get a grip I'd say. You're not</div>
<div style="margin-bottom: 0in;">
the only one.
</div>
<div style="margin-bottom: 0in;">
They seem stark, distant, those strange
parents. Life goes on, you know.</div>
<div style="margin-bottom: 0in;">
<br /></div>
<div style="margin-bottom: 0in;">
<br /></div>
<div style="margin-bottom: 0in;">
And they know, that life goes on.
Without, they are strong, vigilant while<br />
they caress their child and wipe his brow.<br />
How much sweat
in an ounce of pain? How much
</div>
<div style="margin-bottom: 0in;">
pain in an ounce of sanity?</div>
<div style="margin-bottom: 0in;">
<br /></div>
<div style="margin-bottom: 0in;">
They caress their child and a smile
lights up that face, and death</div>
<div style="margin-bottom: 0in;">
smiles patiently. Life goes on. 'Make
the best of it', your encouragement is</div>
<div style="margin-bottom: 0in;">
endearing, as life goes on.</div>
<div style="margin-bottom: 0in;">
<br /></div>
<div style="margin-bottom: 0in; text-align: justify;">
One day is not the next, there is only
one day. There is only one moment,<br />
everything lies within that one moment, even if it
lasts for years.<br />
One long instance of life, hovering, quivering. Brought to your knees,<br />
perhaps by tears, but also thanks, because life goes on. You wish for that end,
that moment of joy, when it all pays off. The caring, the giving, the
sacrifice. The weariness ends when you know the secret, that their
life makes amends, the sweetness vivifies, the pureness of that child
of theirs, those strange parents.
</div>
Eric Fischerhttp://www.blogger.com/profile/02471331868560587898noreply@blogger.com1tag:blogger.com,1999:blog-5000267568708943345.post-89656580312936963742015-12-05T14:26:00.002+02:002016-11-10T09:56:35.866+02:00Raising the unbearable<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjq1iC6Gl2FR_n7t3l2aglUlMj5a7p3qIMi4H6CZ8KCIfS_yVKvi3SvV6kuCCd5PvtBkjFgmBhn6tYPFZ9VOgrjGrQa1kaWsyqJ4O3SKGaSk7vB2JwVZ8iXGwUAT7ZD5qKPudaH9wXcHBo/s1600/tumblr_nb2nof4GQr1s85u2fo1_500.gif" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjq1iC6Gl2FR_n7t3l2aglUlMj5a7p3qIMi4H6CZ8KCIfS_yVKvi3SvV6kuCCd5PvtBkjFgmBhn6tYPFZ9VOgrjGrQa1kaWsyqJ4O3SKGaSk7vB2JwVZ8iXGwUAT7ZD5qKPudaH9wXcHBo/s400/tumblr_nb2nof4GQr1s85u2fo1_500.gif" width="400" /></a></div>
<div style="text-align: justify;">
<br /></div>
<div style="text-align: justify;">
On my news feed I came across an article titled, <a href="http://www.telegraph.co.uk/women/family/i-love-my-disabled-sons-but-raising-them-can-be-unbearable/" target="_blank">"I love my disabled sons, but raising them can be unbearable".</a> I stopped reading after coming across this sentence, in the very first paragraph: "<i>Yet I can imagine only
too easily how <a href="http://www.telegraph.co.uk/news/uknews/law-and-order/11237402/Tania-Clarence-detained-in-hospital-over-disabled-childrens-deaths.html">Tania
Clarence did the unthinkable and killed her children</a> - because
the pressure of caring for them is like being buried alive</i>."</div>
<div style="text-align: justify;">
Eventually, out of interest but also from respect (knowing so well the difficulties families face raising severely disabled children) I read the entire article. Opinions may not matter, but discussion does, even if it is inside our
own heads where, rarely, change happens and a different perspective is
gleaned. Perspective, though is not much more than a fancy word for opinion. I looked for a place to comment, a few sentences to convey my concern as parent of a catastrophically disabled child, but there was none. </div>
<div style="text-align: justify;">
<br />
<a name='more'></a><br /></div>
<div style="text-align: justify;">
I wanted to say, "Thank you for writing this thought provoking piece and for making many of the struggles, common to families such as yours more visible. First time coming across your article though, I stopped reading after, '<i>Yet I can imagine only
too easily how <a href="http://www.telegraph.co.uk/news/uknews/law-and-order/11237402/Tania-Clarence-detained-in-hospital-over-disabled-childrens-deaths.html">Tania
Clarence did the unthinkable and killed her children</a> - because
the pressure of caring for them is like being buried alive</i>'. I'm not quite certain how you can 'easily imagine' the 'unthinkable' but that has nothing to do with my actual concern over the sentence as a whole and what it signifies.</div>
<div style="text-align: justify;">
Parents of severely disabled children have a rough time of it, one that can easily devolve to 'catastrophic' in terms of quality of life. Very little or next to no assistance is what marks the lives of such families in many countries, even developed western nations. I've been living that life for nearly 18 years with my son, whom I care for continually at home and who is catastrophically disabled with a life-limiting condition. Each day is a struggle which will not cease even during night, even if all the morning will have to show for it, is that it was his final night on this earth. It doesn't end, until it does. </div>
<div style="text-align: justify;">
The author aptly ascribes to this life the sense of being buried alive. Indeed, I know this to be true and have felt the very life force drain from me as endless intense care were squeezed from me like water from a desert stone. But not once did I think, 'Well, I'm being buried alive, I'd better kill my children', as is suggested by Henrietta Spink as a reasonable thing to contemplate. I would die before I would ever consider proactively taking the life of my child, as Tania Clarence (or <a href="http://iamabrokenmanyoucantbreakme.blogspot.co.il/2014/10/as-eve-of-tracy-latimers-death.html" target="_blank">Robert Latimer</a>) did. Context in such a situation is critical. We must understand the circumstances and it was her own circumstances and the situation of Mrs Clarence that spurred Mrs. Spink to write her article. </div>
<div style="text-align: justify;">
The personal ethics of a parent faced with the prospect of raising a severely disabled child will stem from their mindset, as it creaks and breaks under the strain. When you add in the fatigued mind of someone who suffers from chronic sleep deprivation and seeks but finds little support, be it from family, friends or government assistance you have a recipe for disaster. While we are changed by our parenting experience, though bullied into growth as extreme caregivers, pressure does not always a diamond make. Surely, without the stress and fatigue, the financial hardship (having lived at the poverty line for nearly 18 years now, I know) different decisions would be made?</div>
<div style="text-align: justify;">
<br /></div>
<div style="text-align: justify;">
What prompted Mrs. Spink, with so many years of experience in <i>every </i>aspect of caring for not one, but two, severely disabled children to say that it is 'easy' to imagine killing her children, still baffles me. I understand that having these thoughts are troubling. I get that having these thoughts is not anything like actually doing it. I also get that Tania Clarence's state of mind was such that she believed she was doing her three kids a favor by murdering them. It doesn't matter that she was ill-informed though, since her children, suffering from SMA type 2, could easily have gone on for several years without great suffering. It is equally possible that they would have suffered, (although the likelihood that all three children would go through the exact same experience is not overwhelming) the thought that, after having gone through a horrible experience and watching your child die, that you had two more such experiences already unfolding, your future suffering mapped out in front of you, could certainly offer insight into the state of mind of Tania Clarence. </div>
<div style="text-align: justify;">
<br /></div>
<div style="text-align: justify;">
The quote, "every day Tania knew she was
watching them move slowly and inexorably towards certain death" sums this up nicely. Except that the first thing you do when you have understood that your child is going to have a severely shortened lifespan is accept the fact, then work forward from there. No one stays stuck in the denial stage for years, do they? The daily difficulties of maintaining a semblance of family life in the face of death simply forces you beyond that first impulse to deny, unless you aren't actually caring for your ill or disabled child at all. More questions remain than can be answered. Perhaps the husband and wife discussed the issue, even planned it, with the husband conveniently away on business. Perhaps he didn't have the stomach for it and so his wife decided to take matters into her own hands, smothering her children to death and then making a half-hearted attempt at suicide.<br />
Eventually Mrs Clarence, who was financially secure, was found incompetent to stand trial and put into a psychiatric hospital. After a relatively short time she was allowed day-leave. Thousands of parents rallied around her to offer their support. She was 'brave', 'decimated', 'overwhelmed', 'courageous' and so on and so forth. Personally I didn't read a single comment or article that tried to kick her while she was down. A pity. Almost all comments were of course from individuals who had little idea of what her life was like as a caregiver. There are so many details surrounding this event (round the clock nurses, previous depression, support, antagonistic social services) that knowing her circumstances is difficult in the extreme. And state of mind is what most people seem to think it comes down to. That and the resulting, personal, decision some make in deciding the fate of their children. I don't feel sorry for Mrs Clarence since, after all has been said and done, she may have robbed herself of a future with her children (and as some twisted people have suggested, is punishment enough) but she robbed her children of any say in the matter. As they <i>would </i>grow older and understand more (which was the prognosis) they could convey, in ways that parents know, whether their lives had become more about suffering than about living. She robbed her children of any hope. And while it may seem to some that the word hope is sorely misplaced when discussing the inevitable death of a child, you could not be more wrong. It is exactly hope that lifts up countless parents to collect themselves after they have fallen and take another step towards the future. We grant these parents the right to hope, we wish them well, wish for them to have the strength not to implode, but if they do, we will all rush in and help, right? In theory at least. But what about the children? No voice for them at all? Because they are too young to understand? Only a mother should decide? How about erring on the side of caution?</div>
<div style="text-align: justify;">
This requires parents to be educated in navigating the trenches of extreme parenthood. But that manual has not been written yet. It is being pieced together by parents and caregivers exchanging information and support, on the Web for example in countless support groups and charities. But there is very little trickle-up effect to government and local councils are often hamstrung by government agencies.</div>
<div style="text-align: justify;">
And yet different parents, in nearly identical situations, will react differently. Is this because of their upbringing? Is it because it is impossible to quantify the actual differences in support some parents get? Some are simply stronger than others? All true. Mix and match as you please, season with whatever further convolutions you are partial to.</div>
<div style="text-align: justify;">
<br /></div>
<div style="text-align: justify;">
Despite opening her article with such a loaded sentence it is after all, just her opinion. It's not that she is deciding public policy for all such families in her district, so she really does not need to defend her position. She calls it as she sees it. Even if we cannot though, to the satisfaction of everyone, equate the circumstances of one family to another we can look at the conspicuous absence of a large number of families making the same devastating decision. We hear little or nothing in the media about the large numbers of families with severely disabled children, the absolute majority of such families, where the same
decisions that led Latimer and Clarence to decide to kill their children
are for them, not viable realities. The simple fact is that they choose to live, as terrible as it might be, until nature takes its course, or they find that there is no other alternative. Mrs. Clarence's children still had quite a way to go before this was the case. It seems to me a basic human right not to have to worry if your parents are going to kill you. With an ill or non-verbal child, do we suddenly take away that right?</div>
<div style="text-align: justify;">
<br /></div>
<div style="text-align: justify;">
Spink ends her article with, "There are days when I don’t know if I have the strength to carry on. And that, more than anything, is why my heart goes out to the poor,
beleaguered Clarence family."</div>
<div style="text-align: justify;">
Is this pity, presented here
as a defense of Clarence? Pity is always the first thing a parent of a
disabled child says, is <i>not </i>what they want. Is there a place for pity? Or should we struggle on, beleaguered, broken, because what else <i>can </i>we do? Certainly, contemplating whether you have the strength to continue or not, is a luxury afforded to few. If it is empathy, then it comes from the author's personal acknowledgement that she feels or has felt close to the brink. The brink of what? The only option is killing someone? Alright, I can accept that for some that is the only option they see. But then Spink opened with that acknowledgement, didn't she?</div>
<div style="text-align: justify;">
Her solution, the one that Spink maintains is understandable, i.e. conscionable, is not the norm. It is not the first thing a parent thinks about when considering the future of their catastrophically disabled child and I feel it is misplaced in an article which means to discuss the urgent necessities and traumatic nature of raising severely disabled children.</div>
<div style="text-align: justify;">
<br /></div>
<div style="text-align: justify;">
<br /></div>
Eric Fischerhttp://www.blogger.com/profile/02471331868560587898noreply@blogger.com1tag:blogger.com,1999:blog-5000267568708943345.post-55468603022098106342015-11-25T21:10:00.001+02:002016-11-10T09:58:03.980+02:00His life, his intention, his meaning.<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgTsHOKFwiPO7tM7wlI5jhvHCJkO0Drdok1fXhIUNuMSm80Ow5l-qB7M_TBeAt27e_OqlfUgqdechG4QNoKIa1sltrnswCSCAmzmNe-aNFpVZhsmSu1yv3Dz8N1y45ZgGvaUw8x5CJExdM/s1600/Waterfall-sunset.gif" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="197" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgTsHOKFwiPO7tM7wlI5jhvHCJkO0Drdok1fXhIUNuMSm80Ow5l-qB7M_TBeAt27e_OqlfUgqdechG4QNoKIa1sltrnswCSCAmzmNe-aNFpVZhsmSu1yv3Dz8N1y45ZgGvaUw8x5CJExdM/s400/Waterfall-sunset.gif" width="400" /></a></div>
<div style="text-align: justify;">
"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 <i>loves</i> 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.</div>
<div class="MsoNormal" style="text-align: justify;">
His life, his intention, his meaning."</div>
<div class="MsoNormal" style="text-align: justify;">
<br /></div>
<div class="MsoNormal" style="text-align: justify;">
<i>excerpt from 'Before the god of the fields', an upcoming novel.</i> </div>
Eric Fischerhttp://www.blogger.com/profile/02471331868560587898noreply@blogger.com0tag:blogger.com,1999:blog-5000267568708943345.post-80698939669465959592015-11-19T14:06:00.000+02:002016-11-10T10:00:36.386+02:00So loud<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiAz7ZnfgSQgXFEN0QKtXujdLsPcYKew4Ka4o0ciZSChLSV3v6qZxMLs3WR1ZiXSiUeWyb3rfo0hfixvSoDXz9uBrph_c7DTMcNJldIbDyAY-G5DfeVDkySIATrssbEpZbm0e8U4NMY5NY/s1600/tumblr_m8cxrlGDBo1qg39ewo1_500.gif" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="220" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiAz7ZnfgSQgXFEN0QKtXujdLsPcYKew4Ka4o0ciZSChLSV3v6qZxMLs3WR1ZiXSiUeWyb3rfo0hfixvSoDXz9uBrph_c7DTMcNJldIbDyAY-G5DfeVDkySIATrssbEpZbm0e8U4NMY5NY/s400/tumblr_m8cxrlGDBo1qg39ewo1_500.gif" width="400" /> </a></div>
<div style="text-align: justify;">
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?<br />
<a name='more'></a></div>
<div style="text-align: justify;">
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. </div>
<div style="text-align: justify;">
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.</div>
<div style="text-align: justify;">
<br /></div>
<div style="text-align: justify;">
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 <i>is</i> too much, there will be something to do.</div>
<div style="text-align: justify;">
<br /></div>
<div style="text-align: justify;">
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. </div>
<div style="text-align: justify;">
Every thing goes on as before, except for my thinking, that things will continue to go on as before.</div>
<div style="text-align: justify;">
<br /></div>
<div style="text-align: justify;">
The quiet in between is no longer my friend, the silence is a lie.</div>
Eric Fischerhttp://www.blogger.com/profile/02471331868560587898noreply@blogger.com0tag:blogger.com,1999:blog-5000267568708943345.post-33315976212982852732015-09-22T12:08:00.001+03:002016-11-10T09:59:14.679+02:00Short and sweet<!--[if gte mso 9]><xml>
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<w:LsdException Locked="false" Priority="39" SemiHidden="true"
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<w:LsdException Locked="false" Priority="39" SemiHidden="true"
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<w:LsdException Locked="false" Priority="39" SemiHidden="true"
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<w:LsdException Locked="false" Priority="39" SemiHidden="true"
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<w:LsdException Locked="false" Priority="39" SemiHidden="true"
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<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
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<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
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<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
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<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
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<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
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<w:LsdException Locked="false" Priority="62" Name="Light Grid"/>
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<w:LsdException Locked="false" Priority="31" QFormat="true"
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<w:LsdException Locked="false" Priority="32" QFormat="true"
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<w:LsdException Locked="false" Priority="33" QFormat="true" Name="Book Title"/>
<w:LsdException Locked="false" Priority="37" SemiHidden="true"
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<w:LsdException Locked="false" Priority="39" SemiHidden="true"
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<w:LsdException Locked="false" Priority="41" Name="Plain Table 1"/>
<w:LsdException Locked="false" Priority="42" Name="Plain Table 2"/>
<w:LsdException Locked="false" Priority="43" Name="Plain Table 3"/>
<w:LsdException Locked="false" Priority="44" Name="Plain Table 4"/>
<w:LsdException Locked="false" Priority="45" Name="Plain Table 5"/>
<w:LsdException Locked="false" Priority="40" Name="Grid Table Light"/>
<w:LsdException Locked="false" Priority="46" Name="Grid Table 1 Light"/>
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<w:LsdException Locked="false" Priority="48" Name="Grid Table 3"/>
<w:LsdException Locked="false" Priority="49" Name="Grid Table 4"/>
<w:LsdException Locked="false" Priority="50" Name="Grid Table 5 Dark"/>
<w:LsdException Locked="false" Priority="51" Name="Grid Table 6 Colorful"/>
<w:LsdException Locked="false" Priority="52" Name="Grid Table 7 Colorful"/>
<w:LsdException Locked="false" Priority="46"
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<w:LsdException Locked="false" Priority="47" Name="Grid Table 2 Accent 1"/>
<w:LsdException Locked="false" Priority="48" Name="Grid Table 3 Accent 1"/>
<w:LsdException Locked="false" Priority="49" Name="Grid Table 4 Accent 1"/>
<w:LsdException Locked="false" Priority="50" Name="Grid Table 5 Dark Accent 1"/>
<w:LsdException Locked="false" Priority="51"
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<w:LsdException Locked="false" Priority="52"
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<w:LsdException Locked="false" Priority="46"
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<w:LsdException Locked="false" Priority="48" Name="Grid Table 3 Accent 2"/>
<w:LsdException Locked="false" Priority="49" Name="Grid Table 4 Accent 2"/>
<w:LsdException Locked="false" Priority="50" Name="Grid Table 5 Dark Accent 2"/>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi8IbsIIyM1JNgaTXdQJRucgnPE7k0b11crncOluCyaeUIUYKu_NvoiiErB75hGBL-wZcao83hVcdA0X1PcoJAi3_z7aP6Fj81Io4V3Ijb5z7y6j-6kzL0NBH5gALJqY-teeElJc4oXrug/s1600/nature.gif" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="300" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi8IbsIIyM1JNgaTXdQJRucgnPE7k0b11crncOluCyaeUIUYKu_NvoiiErB75hGBL-wZcao83hVcdA0X1PcoJAi3_z7aP6Fj81Io4V3Ijb5z7y6j-6kzL0NBH5gALJqY-teeElJc4oXrug/s400/nature.gif" width="400" /></a></div>
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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.<span style="mso-spacerun: yes;"> </span>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.</div>
Eric Fischerhttp://www.blogger.com/profile/02471331868560587898noreply@blogger.com1tag:blogger.com,1999:blog-5000267568708943345.post-51437977670931033392015-07-22T18:04:00.000+03:002016-11-10T09:59:43.653+02:00A look back at January 1st, 2012<div style="text-align: justify;">
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh0E8UPs0IiuGA6CvD2nynNL3l8JT7ezXBFUn5arbtpLRKLIywkkaE34e7Wnmy0VWfizpriDa8yGCqfMBfMfm9oEXZaF9EV11cl63g-7u1qHu7xNPGxyvUrbFKD9PvnH7QapO0jnzw_rzw/s1600/tumblr_myvxtbu46a1t7gem4o1_r1_500.gif" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="298" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh0E8UPs0IiuGA6CvD2nynNL3l8JT7ezXBFUn5arbtpLRKLIywkkaE34e7Wnmy0VWfizpriDa8yGCqfMBfMfm9oEXZaF9EV11cl63g-7u1qHu7xNPGxyvUrbFKD9PvnH7QapO0jnzw_rzw/s400/tumblr_myvxtbu46a1t7gem4o1_r1_500.gif" width="400" /></a></div>
<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><i>Miss her every day.</i> 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 <i>outside. </i>While <i>inside</i> the same strength and kindness continued unabated.</span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">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.</span></div>
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">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.</span></div>
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">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.</span></div>
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">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.</span></div>
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">I told him he wouldn't see his grandmother again and once again I couldn't stop the tears.</span></div>
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">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.</span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">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.</span></div>
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">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.</span></div>
Eric Fischerhttp://www.blogger.com/profile/02471331868560587898noreply@blogger.com1tag:blogger.com,1999:blog-5000267568708943345.post-28333190019830099342015-07-15T18:04:00.001+03:002015-07-15T18:04:35.004+03:00<h2>
<span style="font-weight: normal;"><i>For the summer issue of Inner Tapestry, Carolyn Murray wrote an article about Segev and myself. You can read the issue online here: <a href="http://issuu.com/heartglow/docs/summer_2015_inner_tapestry" target="_blank">Caregiver Diaries</a></i></span></h2>
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<span style="font-weight: normal;"><i> </i></span></h2>
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<span style="font-weight: normal;"><i> </i></span></h2>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg1B3TwpSB2Zk85NjfsPZ7wd-wzq2uouvIcqk_gxGOAfqwaH3D_EqaUfLdXsHroUqxQIehDph4ApyYQY2tC6YMEmOGRNoFczucoehrXbmSf3_4j7IVJyRYUF74mJsnLvQ1cmvI1dMFkFdo/s1600/Screenshot+2015-07-15+17.38.28.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg1B3TwpSB2Zk85NjfsPZ7wd-wzq2uouvIcqk_gxGOAfqwaH3D_EqaUfLdXsHroUqxQIehDph4ApyYQY2tC6YMEmOGRNoFczucoehrXbmSf3_4j7IVJyRYUF74mJsnLvQ1cmvI1dMFkFdo/s400/Screenshot+2015-07-15+17.38.28.jpg" width="308" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Inner Tapestry</td><td class="tr-caption" style="text-align: center;"><br /></td></tr>
</tbody></table>
<br />Eric Fischerhttp://www.blogger.com/profile/02471331868560587898noreply@blogger.com0tag:blogger.com,1999:blog-5000267568708943345.post-90443519959777241282015-07-05T13:39:00.001+03:002015-07-22T17:32:58.659+03:00<br />
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<i><span style="font-size: large;">I kiss his hand.</span></i></div>
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<i><span style="font-size: large;">It is damp as he flickers in and out</span></i></div>
<div style="text-align: center;">
<i><span style="font-size: large;">of consciousness.</span></i></div>
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<i><span style="font-size: large;">Do you understand?</span></i></div>
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<i><span style="font-size: large;">I'm here, watching him,</span></i></div>
<div style="text-align: center;">
<i><span style="font-size: large;">watching over him.</span></i></div>
<div style="text-align: center;">
<i><span style="font-size: large;">He seems everywhere, in everything</span></i></div>
<div style="text-align: center;">
<i><span style="font-size: large;">and yet I must keep him</span></i></div>
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<i><span style="font-size: large;">contained,</span></i></div>
<div style="text-align: center;">
<i><span style="font-size: large;">in this tiny little life where anything</span></i></div>
<div style="text-align: center;">
<i><span style="font-size: large;">is everything.</span></i></div>
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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 <a href="http://iamabrokenmanyoucantbreakme.blogspot.co.il/2011/01/giri-ninjo.html" target="_blank">Giri-Ninjo</a> that both elates, giving hope but also deepens darker feelings.<br />
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.Eric Fischerhttp://www.blogger.com/profile/02471331868560587898noreply@blogger.com2tag:blogger.com,1999:blog-5000267568708943345.post-68148346854071457612015-06-22T12:37:00.001+03:002015-06-22T12:37:12.445+03:00Hold on/Let go<div class="separator" style="clear: both; text-align: center;">
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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...</div>
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Eric Fischerhttp://www.blogger.com/profile/02471331868560587898noreply@blogger.com0