Elaine and Denise, (Share one, share all!)

I have read your post several times and I'm moved by your love and
determination.  I marvel at the strength you found to preserve and nurture
Joshua while resurrecting your own body and soul.

Lord knows what Denise touches when she writes, her greatness opens worlds
for us--well...maybe doors.  So, I'm not quite surprised you "outed," given
how many of us are molting after Denise turned on her laser beam. ;-)

After reading Denise and Mag some of my more prize childhood memories
started to get my attention.  Certainly not what you inspired in your post,
except that this seems an opportune time as any to continue my outing.

I recall being "beaten," hit pretty hard "for my own good," on many
occasions, to be "taught" the tough lessons, for my own good, of course, to
control my temper when my younger cousin or others took physical advantage
of me.  What I tend to remember of little Stevie being so enlightened by his
Mom was his discovery of a place within himself where he felt no pain.
Sooner or later the lesson would end and he could spend several days
silently sorting out his fury.  Many hours were spent plotting revenge,
sometimes acted on, sometimes not.  I learned to hold anger better than
happiness.

One lovely day Mother dearest stripped me naked and paraded me around a
group of visiting women to confirm that a disabled male child was otherwise
equipped to hopefully perform his future manly duties.  Nothing like
affirmative action and role modeling.  Helps explain some kinks, eh!  I came
to know more about shame and sexuality than I needed to know.

Some significant inroads occurred years earlier, at about two years, when
little Stevie was placed with Dr. Temple Faye (now the Institute(s) for
Human Potential).  The aim was to determine the extent of cerebral injury
and devise treatment.  My subjective responses included years of nightmares,
emotional disassociation, floating in endless darkness, despair, and
hopelessness as I begged my mother to stay with me and cried myself to sleep
knowing she wouldn't respond when I called for her.

You'd think this stuff got resolved reaching adulthood.  Became a man
carrying too much luggage, dropping suitcases, spilling contents, rushing
desperately to put everything back in, pick the cases up, start running
again.

One more.  Seems the love of my life spent more time talking with Mums than
me about a possible marriage (She many years later claimed I never
proposed.)  The deal they reached was that she marry another man then become
pregnant with my baby.  Said Mom to me one lovely day: "A normal girl may
love you but not be able to marry you because of your disability.  But if a
woman ever asks you for a baby then you should make one with her."  Good
Motherly advice on the role of a devoted son and dutiful man.

Another page for self esteem and denial.  Sorry I haven't put this into one
power packed, compact, brilliant, Denise-like work-up.  Maybe I'll let her
give me a rewrite.

I'm posting and going back to sleep.

Pardon my intrusion and thanks again for sharing.

Steve M.


From: "Elaine P. Kane" <[log in to unmask]>
Subject: Re:
Date: Sun, 7 Nov 1999 12:02:34 EST

Denise,
    I have read your post from the 5th several times through now.
Firstly,
thank you for your powerful and honest sharing. Your sharing has shed
much
light on my own situation and feelings.
    You  wrote:  - "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 so relate to this. I do not have CP, my son, Joshua does. His CP
is a
result from a car accident I was in when I was 4 mos. pregnant. I have
had 29
reconstructive surgeries on my face and lots of work on my left leg. I
"get
by" now in that my appearance doesn't make people revolt and run in
horror,
but...
    You wrote:  "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."
    In my case, looking at my reflection, I always saw it as grotesque.
I
couldn't "find" me in that reflection. Maybe because the face and the
eyes
are such a focus for people to interact with, it made it worse... So I
live
in a strange place of feeling "ugly", "disfigured", "abnormal" and all
of the
other typical words used... and yet at the same time, having Joshua has
made
me be hypervigilant and focussed on him. In Joshua's case, I look at him
and
do not see the "disabilities" unless I am really looking hard. I am able
to
see the person; the spirit, the courage, the personality, the hard
worker.
    So, Denise, I see it both ways. The pain of reality - both in my own
injuries and resulting disabilities, led me to look very harshly at
myself
and be in a denial of sorts that I have any worth whatsoever. But, where
Joshua is concerned, I am able to see beyond the "disabilities". Maybe
some
of that can be called denial, but I choose to see it as optimism. I am,
after
all, his mother and trying to model appropriate behaviors and actions
for him
to hopefully follow.
    Denise, your words hit me close to the heart. That "teetering" place
you
refer to is very familiar to me. Yes, people can be very cruel. People
can be
very insensitive. But people can also be very kind. People can be
accepting.
Who has the right to judge anyone else in reality? None of us! So as I
struggle to find a balance in my own thinking, I strive to be a part of
the
solution and not the problem. Some days I do well at it and others, I
want to
cry and put a bag over my head...
    I believe that all of us on some level can relate to your words,  "I
was
one of "THEM."  A monstrous mutation, imperfect, disabled."  Some
people's
disabilities are in their attitudes and they are in denial of that!  ;-)
Let's hope that with communication and motivation, we can be a part of
the
solution to this problem of human nature.
    I can't thank you enough, Denise, for your courage and eloquent
expression. In my book, you could not be more perfect than how you are.
<3
Elaine