Dear Jerry,

I haven't forgotten about the web page.  In the meantime I am sending along
something which I have been working on.  Your comments are welcomed prior to
my putting it on the pd mail list.  Back channel please for now.  After your
last posting I realize you probably will suggest another title for the piece.
Honestly, I had the title set up 10 days ago.

Tim Hodgens

-----

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.)  I
recently received a question wondering "if you would care to talk about the
psychological impact (perhaps particularly on YOPWP?) of loss of facial
expression, and 'masking'?  I don't feel up to broaching this openly on-list
... it is too sensitive for me at present."  (From B. Lank)

Dear B.:

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 will 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.