In Your Face

A while back I said that I would be writing some material
on depression as it relates to PD.  It will come eventually.
I also said that a second level discussion could be
related to questions raised on the list and/or sent to me
directly and then I would offer an answer.  (Not the
answer but an answer.)

Your letter really looks at an issue which is usually
left untouched.  Clinically the professional community
deals with it by objectifying it and classifying it as
"masked fascies"  That type of labeling may be helpful
for purposes of identification and categorization.  But,
oh my, how it distances the observer!   It avoids the
emotional impact of that which is being talked about.
(This is not necessarily a bad thing, but it is a
limitation of only looking at something objectively
 from the outside.)

My sense is that this discussion may be of immense
value for many.  My comments in this "piece" are
intended to broach the subject and I expect that
there will be much discussion to follow.

Self consciousness is something which invariably
feeds on itself.  It locks us into a heightened awareness
of a part of ourselves.  That part can be either visible,
e.g., a mole or a crooked tooth, or not externally
visible,
e.g., a shortcoming, a historical event for which we
feel shame, etc.  Once we are focused on that part,
since we have so much invested in avoiding it or not
letting others see it, we will engage in any number of
maneuvers which involve distraction and/or avoidance.
When this happens we lose our freedom to express
ourselves emotionally and behaviorally.

But it gets worse before it can potentially get better.
We also lose our ability to feel fluid or "in the flow"
as soon as we become self conscious or overly
focused on a part.  This loss of fluidity creates a
further feeling of stuckness.  And with the feeling of
stuckness comes a further behavioral stiffness, and
since we act as a whole-person or as a part-person,
we will also have a mental stiffness which will follow.

Then all of these things reinforce themselves into quite
a self-reinforcing trap.  It may even feel like we are
caught in a pair of "chinese handcuffs" where the more
we struggle, the tighter the cuffs become.

If you now consider the fact that Parkinson's Disease is
a disorder of both movement and expression you can
immediately see how the issue of self consciousness
becomes even more of a problem.  But now we are
not talking about a mole or a set of crooked teeth
or a recollection of having done something terrible
or having been terribly shamed.  Now we are talking
about having "lost" our face, or at least the use of it
which we had taken for granted.  The face which we
present to the world.  The face which everyone
notices.  There is the expression of "losing face,"
which to the person with Parkinson's Disease has
both the loss of stature but also the literal implication.

The person with Parkinson's Disease has two prime
defenses taken away.  He or she cannot as easily
walk away from the situation - movement.  He cannot
easily distract with a wry comment or a joke.  She
cannot smile and put the other person at ease - expression.
They are left there with access to few of the usual tools
which others have to deal with their self consciousness.  Is
it any wonder that people with Parkinson's withdraw?
And for all of their secondary shyness (secondary in the
sense that they may not have been shy before Parkinson's
Disease) they are also aware of the reaction of others to
them, to their faces.  And how are they aware of those
reactions?  By observing them on the face of the other
and in their actions and in their expressed or avoided
thoughts.

Consciousness Abhors A Trap

So how is a person to deal with this?  It all begins
with awareness and the first awareness is that the
"mask" is exactly that: a mask.  It has little to do
with the person inside.  We must accept that radically.
The person who does not runs the risk of becoming totally
anonymous to the world.  Do not let that happen.  Don't
let the focus stay on the issue of the "mask/face."  By
this I mean both your focus and the focus of the other
person. If we can find a way to not focus and not
withdraw in self consciousness or defeat, then the
challenge is what to do beyond that.  How can we
create a set of circumstances such that the world
can become engaged in this heroic struggle and
perhaps even help to save the world from focusing
on externals. Secondly, the fact of the "PD mask"
may become a banner which the PD community
could use to raise public consciousness to the
devastating plight of Parkinson's Disease.  By using
the shroud of the "mask" a way may be found to
bring public awareness for political purposes.  It may
be helpful to remember what Tip O'Neill used to say
about politics. He said that it all starts in our own
backyard. Here this means developing your skills to
do the above with people whom we meet every day,
your acquaintances and the people in the super market.

Some will undoubtedly say that they are more
concerned with the impact of the "mask" on their own
emotions and not on political statements or on heroic
battles.  I would offer that the issue is so basic and
so big that perhaps the resolution can only be found
by eventually finding something bigger than itself - and
that will have to be big indeed.

Again the question is: "how to do that?" Let's see if the
immobility can be used to advantage.  I've always been
impressed with how mimes convey so much with so little.
The secret seems to be in the fact that when something
which we ordinarily expect to be there is taken away, that
we scan for additional information.  The mime exploits
this to full advantage and they are aware that the brain
has an enormous capacity to reorganize itself.  They
attend to details impeccably and they make creative
use of what is available.  They mix in constancy of intent
and they practise daily and with much perserverance.
Even though they draw attention to themselves, they are
not self conscious, unless they are trying to convey that.
In essence they find embrace the loss of something,
(speech and language) and dedicate themselves to
finding other subtle ways of expressing what is trying
to be conveyed.  Finally, they recognize that this is all
a developmental process and they do what they do as
often as possible.  Look at how one person "does it."

I read an account of a public meeting between
Muhammed Ali and Premier Fidel Castro.  In it the
Premier, in my appraisal of the account, became
unglued when faced with The Champ.  Apparently
when he could not engage in fast conversation, he
moved on and kept up a banter with other guests
who were at the reception.  A minute later, Mr. Castro,
who was obviously accustomed to being the center
of attention, was aware of the energy in the room still
being centered on Mr. Ali.  He was not saying a word.
He face was essentially immobile.  I presume he was
unblinking.  I doubt if he was smiling.  He "stole the
show" and was the center of attention.  He was literally
performing a trick involving making a silk cloth appear
and disappear by slight of hand.  When Mr. Castro
was drawn back into his "space" he showed how he did
the trick to the Premier so no one would lose face.
Powerful Muhammed Ali has a substantial personal
history.  It would appear that he has always known
how to be the  center of attention.  He has always
known what to do with that attention.  In that sense he
has what could be called a personal aura of substantial
proportions.  But I think he points out a path, a way out
of the dilemma of those behind their "masks."  Perhaps
the real value of that encounter is to be found in the fact
that Muhammed Ali was not thrown "off his game."  He
also did nothing to contribute to another person losing
face.  I do not think he was engaged in any "game."  He
was, in my opinion, "in the flow," he was simply doing
what he does, he was being himself even though his knack
for poetic movement and verse was taken away from him.

I am not proposing that anyone become a Muhammed Ali.
That simply would not work.  But it is possible to not be
thrown back on yourself in self consciousness or shyness.
It is possible to engage strangers in such a way that they
will not become uncomfortable or want to avoid you
because your situation makes then uneasy.  It is possible
to create a history with people such that they will look
forward to seeing you on occasion to find out how you
are doing and if you are still doing something interesting.

Some Provocative Suggestions

Let me offer a few suggestions which flow from the material
presented.  Let me also say that I will be offering more
suggestions as time goes on.  But most importantly, I
expect that each person, or each group of persons if
some want to come together to explore these issues, will
come up with many more suggestions and that they
will hopefully share them so others can benefit.

Here are a few suggestions:  Set up a web page.  (Talk
with Gerry Finch).  You ask what will that do.  Well,
let's put it in the context of what I have been writing about.
The web page makes a statement, your statement.
It may or may not include a picture of you.  For some it
may be important, for others it
won't be.

Your statement must be brought into your daily life in
such a way that the people you meet find out about it.
In the supermarket, give people a business card  On it
have a quote..."Ain't life a kick in the pants?"..."Don't
judge a book by its cover" ..."mask outside, face inside"...
"Still waters run deep…,"etc.  On the card also have your
web address with an invitation to "visit" with you there.
This is your way of bringing people into your world.
As the telemarketers teach us, so what if you only get
one out of fifteen responses.  The one may be real.
The fourteen will have to deal with the quiet event.  If you
don't like the card idea, try a T shirt of your own design;
or advertise your self on your cap.  Most of us are walking
billboards now anyway.  We advertise Nike, and Reebok;
why not advertise the person within.

Develope a "schtick."  If you can write poetry, do it.
Then when you are at parties, yes parties, have
someone read your poem.  Become the "Bard" for your
family, or your gang.  Or collect jokes and give them out.
I was at a party the other day and I brought a typed copy
of "The New Priest," a wonderfully irreverant joke which
was on this list a while back.  I found out the next day
that someone put it on the door to the refrigerator. People
loved it.  That is a joke which I would never be able to get
out, but it lends itself to the written word.

Have someone design a tatoo of a butterfly and then
have it painted on your face, discretely.  Or for the truly
bold, have it placed on as a real tatoo.  The butterfly
is the hope of transition and a reminder of who is inside.

Volunteer as a portrait subject for a young artist or at
a local art club.

Buy a Casio keyboard with a voice synthesizer.  Start
archiving your voice.  Prepare certain things in your
own voice while it is still strong.  Use it later.  It will give
you a means of staying in some conversations.

In no way am I saying that this will be easy but consider
the alternatives.  Remember that this will involve creativity
and persistance.  The goal is to continue to find ways of
expressing yourself and the first step in that direction
is to not withdraw.  The task is to figure out ways of
not staying frozen in self consciousness.  Keep the
creative energies flowing.  This will help us to be
pro-active towards maintaining your own dignity and
self-respect.  Finally, remember that the primary battle
will be in the mind.  This piece has not dealt with the
emotions of loss and sadness, rather choosing to
emphasize expression and finding ways to stay in the ring.

I hope that has been helpful.  Please share the wealth.


Tim Hodgens, Ph.D.
Psychologist
Westborough, MA


Post Script:  When I first saw people with Parkinson's Disease I saw the mask.
When I joined the Parkinson's Mail List I saw people beyond the mask.  The
keyboard and the internet have brought people together.  This is cutting down
on the isolation but it is also showing all that is within, that ordinarily is
not shown outside.  One enormously powerful consequence has been the
grassroots political activism which is coming about.  This is a wonderful
development which in my humble opinion needs to be taken further.  The
"further" I refer to is a combination of a political activism and a "coming
out from behind the mask of anonymity.