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St. John's University Cerebral Palsy List
Date:
Sun, 21 Nov 1999 14:40:23 -0600
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Stephen M,
Sure , I wish I didn't have Cerebral Palsy.  This happens to me a lot.  Perk









----- Original Message -----
From: I. STEPHEN MARGOLIS <[log in to unmask]>
To: <[log in to unmask]>
Sent: Friday, November 05, 1999 10:31 PM
Subject: Denial


> Perk,
>
> What do you think denial is about?
>
> You don't have to answer.  I'd really like to know, though.
>
> Do you ever wish you DIDN'T have CP?  I do, a lot.  And I pretend I don't
> have CP, a lot.  I get angry a lot when I can't pretend.
>
> Life's tough enough with CP.  Pretending CP isn't there makes life
tougher,
> like trying to move a wheelchair with its breaks on or eat soup with a
fork.
> Everything takes more energy.  Pretending doesn't make CP go away.
>
> I think I deny my CP so I can pretend I'm like everybody else who doesn't
> have CP.
>
> Perk, do you know the bit about vampires and mirrors?  Vampires don't have
a
> reflection.  Well I feel like a vampire in reverse.  I look in a mirror,
or
> store window when shopping, or at a picture.  I see my image and I
> disappear.
>
> That to me is what denial's about.  I can't accept or see the truth and
> reality about my Cerebral Palsy.  I'd rather live the lie than admit the
> truth.
>
> Please let me know what you think and feel.
>
> Thanks,
>
> Steve M.
>
>
>
>
> From: Perk <[log in to unmask]>
> Subject: Re: Denise's Denial -Long
> Date: Fri, 5 Nov 1999 17:52:25 -0600
>
> Denise,  What are you saying ?  -Perk
>
> ----- Original Message -----
> From: Denise D. Goodman <[log in to unmask]>
> To: <[log in to unmask]>
> Sent: Friday, November 05, 1999 8:43 AM
> Subject: Denise's Denial -Long
>
>
> > Perk has asked a very valid and straight forward question.  "Denise,
> How
> > could you have denied a physical disability?"  I honestly wish there
> was a
> > simple, black & white, straight forward answer.  Unfortunately, human
> > behavior is a complex puzzle in multi-shaded grays.  Even the most
> ardent
> > slueth has difficultly fitting all of the pieces together.  However, I
> will
> > do my level best to answer her question until we can all see a logical
> shape
> > and form.
> >
> > Most people like life neat and tidy, but you can't always toss on a
> lable
> and
> > group people together.  Here on this list, we have people with a
> disability,
> > labled cerebral palsy.  You can also have a bunch of candy on a table
> marked
> > "Chocolate."  Of course some might be dark, semi-sweet, have nuts,
> powdered
> > as coco, or in it's raw natural state.  A rich piece of semi-sweet
> tastes
> > nothing like the bitter pre-processed chocolate.
> >
> > The same holds true here.  (And I am in NO WAY implying some of us are
> sweet,
> > bitter, or nuts  :D ).  I only use candy as an analogy.  In a way,
> those
> with
> > cerebral palsy are like the cholocate.  We may all have the same basic
> > disability, but we each have very different levels of physical
> ability.
> >
> > If you have always needed a wheel chair or crutches, or your cp is
> severe,
> it
> > may be difficult to relate to the way I was able to deny being
> disabled.
> > There are those on the list who say they were merely "brushed by cp."
> These
> > are the people who may easily identify with my denial.
> >
> > The doctors have always said I had an "Extremely Mild" case.
> Additionally,
> > I've had lots of help processing the small amount of raw disability.
> Eight
> > operations, 14 or so years of night and day braces, 16 years of
> physical
> > therapy.  All of this helped me to deny my disability.  What at first
> appears
> > a stark, illogical contridiction, makes more sense upon closer
> inspection.
> >
> > Being merely "mildly disabled" - I lived in a sort of pergatory.
> (Again,
> I
> > make the following comparasion only for the purpose of illustration.
> No
> > malice or judgemental inference should be taken from the following
> analogy.)
> >  - I didn't live with the sheer hell of being completely disabled, yet
> the
> > heavenly life of being "able-bodied or normal" was always just beyond
> my
> > grasp.
> >
> > I spent a very short time with other disabled kids.  Only in
> pre-school.
> The
> > remainder of my education was in "regular" school.  Not in a
> mainstream
> > program, since that didn't exist.  Now, most children want to belong.
> They
> > need a sense of being liked and part of the gang.  I didn't want to be
> > "different."  I didn't want to be the only "cripple kid" in regular
> school,
> > but I was.  In order to survive, emotionally, I distanced myself from
> my
> > disability.  Mentally, I NEVER considered myself disabled.  No matter
> how
> > many times the kids called me names, tripped or spat at me - their
> comments
> > and cruelty slid right off.  I kept myself warm and safe in the
> knowledge,
> "I
> > wasn't one of 'Them', a cripple."
> >
> > It's amazing how the human psyche can rationalize and justify any
> situation.
> > I think of it as a survival skill.  Personally, I was not able to
> accept
> my
> > disablity because I was always given the message, verbally and through
> > action, "Being different is bad.  Being disabled is worse."
> >
> > Perhaps if I'd had some support at home, I would not have buried
> myself so
> > deep in denial.  My mother was, I've come to believe not unwilling,
> but
> > unable to cope with life.  I share the following from my own life not
> to
> > illicit sympathy, but to further your understanding of my personal
> situation.
> >  My father abandoned us when I was very young.  My mother wasn't yet
> 27,
> had
> > 3 small children, and one (me) was disabled.  She had no job skills,
> but
> got
> > a grant and went to college while working 3 menial jobs.  We lived
> below
> the
> > poverty level, often without heat in winter, and many times without a
> decent
> > meal.  In fact, mom had even resorted to checking the dumpsters behind
> the
> > grocery store because they often threw away food which was still good.
> > She also was very violent and beat me on a regular basis.  With all of
> this
> > in mind, I'd like to quote a few paragraphs from an autobigography
> I've
> been
> > working on.  Again, none of this is being told for any reason, other
> than
> to
> > answer Perk's question.
> >
> > Excerpt from, "Be A Little Solider."  The beatings didn't leave many
> > permanent physical scars, but my mother crossed a line which finally
> pushed
> > me to the breaking point.  She uttered words which disfigured my
> identity.
> > There would be no justification or rationalization for this heinous
> betrayal.
> >  My mother broke the code of silence between a disabled child and
> parent.
> In
> > the midst of a routine assault over something ridiculous, my mother
> became
> a
> > shrieking maniac.  Her face twisted around eyes glazed over with
> > unadulterated disgust and loathing.  I felt the spittle hit my face.
> It
> > emphasized each word as it echoed throughout our empty house, "You
> make me
> > SICK!  It makes my stomach turn to watch you walk."
> >
> > All the physical assaults, emotional traumas, and pain I'd battled
> during
> my
> > young life didn't prepare me for those traitorous words.  I was left
> in
> > ruins.  A state of total
> > devastation.  I'd been living in denial, but I could no longer hide
> from
> my
> > greatest fear.  I was one of "THEM."  A monstrous mutation, imperfect,
> > disabled.  Was it any wonder the other children hated me?  How could I
> expect
> > love or friendship if my flesh and blood mother was physically
> sickened by
> > the sight of me?
> >
> > I truly believed I'd been functioning without feeling, but I was
> wrong.
> Once
> > teetering on the edge of nothingness, these words pushed me into a
> frigid
> > abyss.  Ironically, I did experience powerful emotions seconds before
> a
> > protective glacial barricade crystallized inside me cutting off any
> and
> all
> > emotion.  The last feelings to touch me were inspired by the words my
> mother
> > screamed in my face.  I felt repulsive, ashamed, grotesque, sub-human,
> and
> > then ... blissful nonexistence.  Denise had disappeared." <end of
> excerpt>
> > This might not completely or satisfactorily answer your question Perk.
> My
> > hope is that by giving you a glimpse into why I distanced myself from
> the
> raw
> > reality that I was disabled, you can see that it is not only
> plausible,
> but
> > logical to believe someone can look in the mirror yet never see their
> true
> > reflection.  Take Care and Be Well:  Denise
>

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