I would like to know more about the CP Dystonia list

Joyce
-----Original Message-----
From: I. STEPHEN MARGOLIS <[log in to unmask]>
To: [log in to unmask] <[log in to unmask]>
Date: Monday, February 08, 1999 1:40 PM
Subject: Embarrassing CP quirks


>Why embarrassed with these quirks
>these shumbling CP hurky-jerks?
>
>Hi Fiona,
>
>Thanks for your interesting post.
>
>Regarding anger, laughter, and other emotions, I offer my opinion without
>benefit of formal medical, psychological, or other kindred expertise.
>
>Thus, my perspective as a 58th year CP man, middle class and moderately
>educated.  At this advanced age life finds me going through change and
>reappraisal.  I'm reconsidering my beliefs, assumptions, and CP identity as
>derived from the malarkey and BS that doctors, scientists, and other well
>intended, dubiously witted, short sighted and money driven specialists push
>and publish upon the rest of us.  Clergy, teachers, parents, usually parrot
>kindred bromides which disguise and undermine what often remains unexplored
>about our best nature.  I will try, however linguistically brainwashed, to
>avoid the indecipherable argot which veils ignorance behind "specialist"
>jargon.
>
>As you may well observe, Fiona, long after Eden, we varied adults still
>sport our fig leaves.  Our most difficult problems arise innately,
>"structurally," from our being human: that strong emotions, senses, and
>thoughts inform us and compel our actions.
>
>The human condition includes lifelong questions which occasionally yield
>acceptable, often less than adequate and compromising, and ever changing
>answers.
>
>If you read any of Bobby Greer's or Vikki A. Stefans' recent posts,
>primarily to the CP Dystonia list, they attempt to convey a range of the
>definitions and distinctions, including historical offerings, which doctors
>and scientists are compiling on our (or is it their own?) behalf. I find
>Bobby and Vikki to be brilliant, superbly educated and experienced, well
>intentioned folks.  Their efforts to share their knowledge warrants
>appreciation.
>
>Yet their efforts make me laugh, seem absurdist  What I find "laughable" is
>the gap from what the definitions portend to their translation into useful
>matters and means that improve my life, day to day.
>
>What I find lacking and harmful in assumptions about CP, and this may more
>reflect my own bias and ignorance, is a dynamic, brain function based,
>neurologic presentation of CP, one which better explains what questions you
>raise regarding emotions or better reflects the rather dramatic adverse
>changes in the range of abilities and health that Mag or Denise or Kyle or
>others or I have been experiencing.
>
>The matters you raise are not unique.  I've had anger, laughter,
>physio-emotional response issues all my life.  It's taken most of my life
to
>"sort out."  Things still happen unexpectedly, sometimes from joy and
>surprise, often unwanted.
>
>Controlling temper and putting matters in or keeping perspective takes
>practice, a lifetime's worth.  The tasks seem enormous when there's so much
>to be angry about, much frustration in not being able to do for ourselves,
>dependence on other people who usually don't do things quite right or don't
>quite "get it."
>
>Some of us are more predisposed to anger.  Some of us have to live with,
>cannot readily change, conditions and situations which invoke anger.
What's
>tough to see in the CP experience is how typically predisposition and
>situations stir anger in any person, i.e., it's not the "CP," it's being
>human.
>
>I don't imply that CP doesn't play a role or take it's toll.  I'd be in
deep
>denial to assert CP doesn't matter.  To me CP probably behavior in ways
>still misperceived and inadequately evaluated.  We with CP are aware, if
>understated, of its daily presence and impact.
>
>CP's have "balance" and "control" problems that come from organic brain
>damage.  Our emotional and physical actions and responses have to be
>"recircuited" through healthy functioning brain regions.  These areas do
the
>"extra" work of conducting "normal" functions and carrying the "duties" of
>the injured parts while the injured parts may partially or erratically send
>diminished or flawed signals, if at all.  Has there yet been adequate
>analysis of the impact of the signals on the central nervous system, the
>ordering and control of the total body dynamic and personality development?
>Not that I've ever heard.
>
>The injured brain and diverted pathways may contribute to emotions
>experienced or expressed erratically, excessively, or in ways divergent
with
>social or physical norms.  In other words, we don't usually look, move or
>sound like nondisabled people in similar circumstances.  Yet we know that
>whatever our differences we're not abnormal.  What I love about Mariana
>Ruybalid's poetry: her powerful refusal to gloss reality.  She insists on
>her personhood and womanhood no matter her degrees of tilt from the
>perpendicular, wields her wondrous beautiful awesome razored language.
>Learn from Mariana, Fiona.
>
>Given intelligence and ability we are responsible for our actions and
>reactions to others and our environment.  A wise man has written
>that people generally in any given social setting are likely to be rude,
>crude, and indifferent.  They regard others in terms of their own self
>interest.  If everybody usually functions similarly we can begin to
>constrain anger when we realize someone else's behavior is not directed
>towards us in a personal endangering manner.  This gives opportunity to
>distinguish what is dangerous, what is normally irritating, and promote
>constructive behavior.
>
>My sense, Fiona, is that you really don't get angry over nothing.
>Something, however trivial or trifling, irritates and angers you,
frustrates
>you, or raises your stress level to a point of anger or rage.
>
>The irony about being human is that trifles and trivia usually upset and
>anger us more than the Big Issues or truly dangerous situations.  Since
>irritations are normal in daily life we need to learn the effective ways of
>handling what's normal.  Give yourself credit, Fiona. You noticed that your
>current reactions are not providing satisfactory results.  By so noticing
>and sharing with us you've allowed yourself to develop another point of
>view.  You've set yourself on the path to change your behavior, a
tremendous
>achievement.
>
>Some techniques and awareness involve "spotting" anger and redirecting
>toward getting a desired result or letting the anger go.  The matter to be
>realized is that you choose behaviors, actions, and reactions.  Don't deny
>your anger, express it, use it appropriately in a mature reasonable manner.
>If you loose control and tip into rage, ok, make amends, acknowledge you'll
>try to do differently next time.  Keep becoming aware of the differences
>between rage and controlled, merited, directed anger.
>
>As for being stressed and overwhelmed by the need to plan.  Look gal, give
>yourself a break.  Do things in smaller segments.  Let others help you.
You
>wouldn't try to get a pound of steak down in one gulp.  Even God, with all
>the tools available to Great Powers, took six days and one of rest to paste
>together the Universe as we know it.  He may have been His Own Boss, but He
>was His Own Chief Steward, Who imposed limits on His work day.
>
>More reasonable expectations yield better results.  You really don't need
to
>worry out every nugget in advance.  Most important things in life happen
>without exhaustive effort.  Most of what needs to get done does.  If you
>worry or try to control too much you may need to address fear, lack of
>experience, lack of self assurance.  If you've got OCD or other dysfunction
>then meds and therapy may be useful.
>
>The pressure and anxiety of anger and laughter in social settings eases
with
>experience, and maturity. As we age we grow into ourselves.  Our reactions
>and sensitivities to what we believe others want of us ease and we become
>more self assured and secure, more centered on our priorities and purposes.
>As we age and mature we grow more into our own acceptance of ourselves.
>
>I went through years of stifling laughter at funerals and not being able to
>release in occupied men's rooms without secluding in a stall and hoping for
>the best.  Now I cry at funerals, usually.  And these days I desperately
>inch towards a men's room praying the urge won't prematurely surge.
>
>And yes I more times control or don't experience anger as I used to.  While
>I find it easier to stop my laughter, and often laugh less, I'm more amused
>at much more often.
>
>Hugs.
>
>[;s>
>
>
>
>Date:    Sat, 6 Feb 1999 17:40:25 +1100
>From:    "B.GIVEN" <[log in to unmask]>
>Subject: Embarrassing CP quirks
>
>I don't post on this list very often.
>
>I was wondering if any of you have difficulty controlling your temper and
>putting things into perspective?
>
>I blow up over nothing. I get so stressed over planning things because I am
>so dependant on other people.
>
>I was also wondering if any of you have trouble controlling your laughter?
>
>Thanks,
>
>Fiona