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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.