What Do Cancer Survivors and U.S. Veterans believe in common? There is more to being Alive than just Breathing and No, We are not Grateful Living Drenched in an Attitude of “Beggars Can’t be Choosers…”

Homeless-and-Happy
Homeless-and-Happy

Jazz is smooth and cool. Jazz is rage. Jazz flows like water. Jazz never seems to begin or end. Jazz isn’t methodical, but jazz isn’t messy either. Jazz is a conversation, a give and take. Jazz is the connection and communication between musicians. Jazz is abandon.  ~ Nat Wolff

Actually, I don’t know what other survivors think because for the past 20 years I have been living in the margins of American life.  Of course I could blame this on something common like the neuropathy that took me down from a very active and productive life, which I never heard of before. I was paralyzed.  Or maybe the oh so common theme for the baby boomers was it was …”the rents fault” even better the man, anti-establishment, blah, blah blah.

I was born with a successful jazz arranger/conductor father who, you wouldn’t know it by looking at him, was a straight up, no holds barred, chauvinist of the more traditionally drenched deadly type.  He felt that the best way he could protect me from the “bad” things in life was to control mom’s and mine.

He wrote a song for me when I was 4 apparently it was a contract he made with himself to enforce it.  I spent most of my childhood in my room.  Not chained to a radiator but imprisoned by some undefined sense of  guilt, a duty as a daughter and powerless to do otherwise.  I grew up all jazz.  Not complaining, just that it is yet another layer that is so opaque that the truth became buried in pages in the books I read and poetry I wrote for an audience of one.  That changed in 1965 which for me was when I had truly fallen in love with music, words, and the Blank Space of which was filled with wonderful possibilities.

Being a Survivor comes in many layers and over the past twenty years the layers have gotten thicker.   Jazz is all about conversation.  It is when freedom of expression is allowed.  Where being totally present is a requirement.  Well there were three conversations I had with my father,  but this one is the one that not only confirmed my suspicions that this conversation revealed what my father felt about himself.  Ever since I was eleven years old I thought it was my fault that I was not the girl he wrote the song for and if he didn’t love me why should I? What remained in my heart was the last words that clang through my head to this day…  Funny thing I loved him no matter what and followed him everywhere in 1965 like a “mini-me” of him throughout all of the rehearsals and live performance.  But, those words some twenty five years after still cut through my heart with the same fear and anger…

”You brought this on yourself!  I told you that I am only doing what is best for you.  You can’t come back home and stop calling your mother at work you will get her fired.  Welcome to the Harsh Reality of Doing it Your Way!”

I didn’t say a word as the phone lay propped against my quaking chin slippery from the tears that fell from a shackled tree.  My arms lay dead at my side and my legs on fire and numb at the same time.  It was hours before I was set to begin my eight treatments of Plasmapheresis which drained my blood and replaced it with human albumin.  Now this was the only treatment for this neuropathy.  As a neuroscientist  the experiments done in the lab were what I thought were noble,  to find new pathways for nerve growth in spinal chord injuries or regenerating bone cells there was through electromagnetic fields were done on the body without any consideration of what was going on in the patient’s mind and spirit.  It is conceivable to not be concerned when we are talking about dogs, or cats, monkeys or rats.  But humans,  that is where we are now and I am terribly frightened that the Frankenstein syndrome has taken affect.  That life has been reduced to materialistic and is quantified by increasing the years of survival.  So the plan is to keep chasing the cure and forget about the carnage of the survivors left to figure out what to do with the rest of their lives.  Somehow I am having a hard time separating my father’s last words and how I feel when I even think of the word “Survivor”.

Actually, until now, I wish I was given the right and the choice to decide for myself because I am living with the unintended consequences that through no fault of mine I got GBS, Uterine and Breast Cancer, I now have Lymphedema I can’t afford treatment for and of course with being a 62 year old, single, female, missing body parts, weakened and rapidly deteriating neuropathy and being treated and feeling like I should feel lucky that I am alive, I don’t think so…It sucks.  And it is rightfully my choice with respect to the astronomical cost to save my life when I can’t afford to stay alive because of the circumstances.  Nobody seems to care.  They suggest therapy because they have accomplished their goal.  Now the rest is up to me?  NOT!  In the next posts will delve into the mindfulness of being a Survivor or the Secret Life of a Survivor…

So mindfully, Mary Oliver’s poem resonates so loudly in my soul…”Every day, I see or hear something that more or less kills me with delight.”

Mindful
by Mary Oliver

Every Day
I see or hear
something
that more or less

kills me
with delight,
that leaves me
like a needle

in the haystack
of light.
It is what I was born for—
to look, to listen,

to lose myself
inside this soft world—
to instruct myself
over and over

in joy,
and acclamation.
Nor am I talking
about the exceptional,

the fearful, the dreadful,
the very extravagant—
but of the ordinary,
the common, the very drab

the daily presentations.
Oh, good scholar,
I say to myself,
how can you help

but grow wise
with such teachings
as these—
the untrimmable light

of the world,
the ocean’s shine,
the prayers that are made
out of grass?

Copyright © 2016 by JM Fuller/Jannat Marie/Jazzybeatchick/. All rights Reserved.

This material has been copyrighted, feel free to share it with others; it can be distributed via social media or pingbacks or added to websites; please do not change the original content and please provide appropriate credit by including the author’s name or visual artist @ https://isurvivorchick.wordpress.com/.  Readers shall not be charged by you under any circumstance for any or all of this content.

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