As I sat and watched the last of my children’s nativity play, I paid particular attention to all the little faces staring out into the room. So many expressions shaped and re-shaped as they performed and watched others perform their parts, telling the traditional story. Then there were those who were looking out to the parents, reacting to acknowledgement and encouragement, and of course the one picking his nose and eating the sticky attachment to his finger. So many faces telling so many stories that collectively gave us the experience of the nativity. Imagine the same play but without any faces. It’s unimaginable as faces are such a significant part of who we are to the world.
We face the world, we face each other, we face off, we pull a face; ‘let’s face it’, you may say to someone. There is a purpose to having a face (including nasal excavation!), which is about recognition, bonding with others and survival. These are all basic aspects of being human and therefore when something goes wrong, it heavily impacts upon the person. One of the most dramatic problems is facial dystonia, within which I include temporomandibular (jaw) dystonia, when the facial muscles are contracting uncontrollably and involuntarily. This form of dystonia has far reaching effects upon recognition, bonding (connectedness) and survival mechanisms as I shall explore. Suffice to say that we are talking about great suffering endured as a result of this condition.
Before describing how dystonia affects these dimensions, I outline my thinking with regards to the purpose of a face. Clearly there is great importance that is supported by the significant representation of the face that resides in the sensorimotor cortex forming part of the so-called homonculus. Our distinct features are recognised by others to identify ‘me’ but I also have a sense of how I look according to those features. My face plays a role in how I meet people and engage with them to form bonds. This is a vital part of our existence, with connectedness playing a role in health and survival as we create communities for mutual benefit. We also bond more intimately, our face and ‘looks’ holding some sway along with how we use the communication functions of the face: verbal and non-verbal. We can gather information about a person by their expression. The person also gathers information about themselves via their felt expression, and indeed can change mood by forcing a new facial position that is predicted to mean something new. For example, if we force a smile, our brain predicts that the most likely cause of the sensory information (from the muscles, joints etc) is happiness, and therefore we feel a sense of joy. The facial role in survival includes breathing, eating and drinking, all specialised and precise activities that are essential.
So what happens when things go wrong?
Aside from dystonia, what else ‘changes’ the face with a consequential impact? I would include conditions such as acne, eczema, facial pain (e.g. trigeminal neuralgia), dental problems, eye complaints (infection, squint, lazy eye, blepharospasm, and other issues that distort the normal or expected configuration and placement of facial features. The Maggie Thatcher Illusion was reported by Professor Peter Thompson in 1980, demonstrating the importance of faces. Both hands and faces have a large representation in the brain, perhaps indicating their significance in our on-going existence. The recent book by Darian Leader, well worth reading, made a study of hands: Hands: What We Do with Them – and Why. The importance of faces and hands then, will amplify the effect when something is deemed to be wrong. Consider the loss of a hand by amputation, and the subsequent feel of what it is like in the frequent case of phantom limb sensations, which can include pain, or the way in which a hand and the digits are experienced following immobilisation.
Those that know us will always recognise us because of familiarity and because their brains (we are more than a brain but for ease I will use the term) make a prediction based on prior knowledge. They simply see ‘me’. However, my sense of self in part is determined by how I feel physically. What does my body feel like? What it is like to be me is more than just the physical sensation as the moment is filled with perception, cognition (thinking) and action. The three are unified into this ‘what it feels like to be me’. With a distortion or a sense that something is not right or how I want it to be, there is a mismatch that creates discomfort, rumination, and suffering to a varying degree. We can sometimes say, ‘I don’t feel like myself today’, referring to different reasons as to why this may be, and in fact, perhaps we can consider therapy to be a way to restore a sense of self. Not how I used to be as we cannot reverse time, but gain a sense of who I am, my authentic self. Movement is part of who I am as demonstrated by the way we recognise someone by their walk or other mannerisms. When we are in flow, these mannerisms occur without thought. As soon as we consciously attend to something that we would not normally think about, it can change. The yips in golf is an example as is the way some people find it hard initially to focus on their breathing when practicing mindfulness.
So, when my face changes, or I perceive a change, then I can feel somehow different from the expected or known ‘me’, which then impacts upon how I engage with the world. Self-consciousness is a commonly described, causing a withdrawal from society. Feeding this can be self-criticism and a sense of shame (a concern about losing connections), which both need addressing as these feelings bring about on-going self-protection that includes the way we move. The emotional centres of the brain communicate enormously with the basal ganglia that has such a role in movement disorders. I am not surprised by recent findings in relation to the gut and Parkinson’s disease as the way we feel, the gut, our overall health are so inextricably entwined. A change in gut flora and emotions come hand in hand and with the way in which our emotional state affects the way we move and interact with the world, hence we need to consider the whole person.
Facial expressions are part of who we are and how we communicate with others. When this changes, and usually an enforced change at that, how we recognise ourselves shifts. People who know the person will continue to know them in that ever-evolving way, and those who do not know the person must look beyond the condition and the way it presents to see the whole. As a society we have an obligation to think about the whole individual as they are not defined by any condition or behaviour.
We are designed, so it seems, to be connected with others and form communities within which we support each other, care about each other and share experiences. Initial meetings arise for all sorts of reasons but in essence when we come together, we look at each other and learn about the features of that person via their posturing as well as the physical characteristics. Implicitly we will be attracted to some people and less so to others. These natural biases we can overcome as we mature and learn about the essence of people.
To bond we would often spend time with someone and talk so that we can learn about each other. The act of speaking is incredibly complex, involving many movements that allow us to form words and make noises. With the involuntary movements of dystonia this can be extremely challenging. This can become even more the case when talking to strangers, to the extent that it may cause the person to avoid doing so. This is one of the areas that we work upon in the training programme both in terms of the formation of words (sensorimotor exercises) and increasing confidence to go and speak to people.
There is a challenge to bonding in some instances. It means being vulnerable and taking a risk as you put your authentic self out there. This is of course how we gain the reward although sometimes it does not work out and we can learn once the feelings of disappointment subside. Developing our sense of worthiness is important under these circumstances, and perhaps even more so with the additional burden of dystonia. As with chronic pain, it is not just about doing some exercises to get better, instead a ‘whole’ approach that addresses all dimensions of the lived experience ~ e.g./ understanding, thinking clearly, developing confidence and resilience. All of these skills can be practiced as ‘skills of well being’.
On a simple level, to survive we must breathe and we must eat and drink. These acts can be somewhat complicated when facial dystonia affects how the mouth is controlled and in some cases taking a simple breath in through the nose can be more difficult. This is not to say that the person cannot breathe! The involuntary movements can be distracting and impact upon how the person actually takes a breath in through their nose or mouth. If they have a cold, then this can be exacerbated.
Choice of food can be narrowed as chewing is especially difficult. Chewing is a skill, which requires precision of movement but also with how much pressure to apply via the jaw and manipulating the food with the tongue. Again, like any skill, this can be practiced as part of a training programme to improve the efficiency, economy and precision. One of the reasons that dystonia can be muscularly painful is because of the overworking muscles. This also results in tension and stiffness described. Muscles are working when they do not need to and when they do need to, they are working too much. There is a circular causality to this feature, similarly in chronic pain when the muscles are being ‘told’ by the higher centres to protect the area. This loop continues until a new (active) inference is made with new information (understanding your condition and how it presents or emerges in you) and actions purposely made with the intent of change in a new direction.
With the self-protect system functioning as a result of the threat of the situation, and this is both conscious and sub-conscious, added to by self-criticism and a lack of self-worth that can be evident, there is a state of ‘freeze or fright or flight’ at play. This involves being prepared to run away or fight or express some kind of communication via the face and mouth: shouting, bearing teeth etc. These are very basic instincts and behaviours at play; the so-called old-brain. The self-protect system plays a vital role in our survival but only in short bursts. When there is a persistent state of protect going on, then our health and we suffer in a number of ways. However, there are a number of simple practices that again I would term the skills of well being, which we can adopt each day to gain healthy benefits. This is in essence the antidote to protect and by being able to gain insight into how we think and act, we can use this awareness to learn to regulate our emotions, make choices with clarity, reappraise situations and thoughts and maintain a focus on what we can do to feel well, healthy and live a meaningful life.
This blog merely touches on many areas that are relevant to dystonia, chronic pain and some of the important roles of a face. Why do we need a face? We have looked at several important reasons and made relevant to dystonia. There are different and unique causes of suffering endured by people with facial dystonia that we identify and work on transforming with specific training but within a context of understanding and compassion that is at the heart of what we do.
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