Professor of Sociology
California State Polytechnic University, Pomona
In 2009 I woke up with Bell’s Palsy. After googling the symptoms… What flashed across my screen in emergency red capital letters were the words: YOU ARE HAVING A STROKE. GO DIRECTLY TO AN EMERGENCY ROOM...I sat frozen for a moment, but I didn’t think I was having a stroke. I knew the signs, and I didn’t have any cognitive impact… I thought, or did I… I ran to the book shelf and grabbed Foucault and my advanced statistics book from graduate school. I could read (and basically understand) Foucault, I could read (and basically understand) multiple regression equations. I was reasonably convinced I was not having a stroke. A quick visit to the ER confirmed that I was not having a stroke. It was Bell’s Palsy. It would go away. But it didn’t…. And it not going away, can be more complicated than residual paralysis. Bell’s Palsy is damage to the seventh cranial nerve resulting in one side of the face being paralyzed (usually, there are rare bilateral cases). It is the most common cause of facial paralysis, though acoustic neuroma, trauma and Ramsay’s Hunt Syndrome are all fairly common causes. Acquired facial paralysis differs from congenital facial paralysis, in cause, impact and experience, but also shares some overlapping essentials and a quintessence of experience. Over the last few years, I have interviewed over 100 people with facial paralysis, some acquired, some congenital (congenital is considerably less frequent in occurrence). I also spoke with doctors, physical and occupational therapists and those connected with people with facial paralysis. Here, I want to focus explicitly on a specific experience, that of not only permanent facial difference, but also, what occurs when a rare movement disorder, synkinesis results.
Synkinesis occurs when as the facial nerves heal and regenerate, they grow to too many places. What this means in practice, is that when one makes facial expressions, the wrong thing happens, in addition to the right thing. As you read that, did you knit your brows in the standard expression of thought? When I knit my brows, my chin also tightens, my mouth pulls… When I laugh spontaneously, my neck tightens and the corner of my mouth pull down as if I were stressed/screaming/miserable. The face may appear paralyzed, but it’s the opposite problem, too much is trying to move. Of my sample, over 80% had synkinesis.
When I set out to interview people impacted by facial paralysis, with a focus on the social and professional aspects, much of what I found was expected. The discrimination faced by those who “look different,” though disheartening, was hardly unexpected. And certainly, as a sociologist, that one’s access to services, ability to cope, and treatment options, were shaped by our intersecting axes of privilege and oppression, though useful and valuable for advocacy, is, not surprising. Being urban, more educated, wealthier, whiter, more professional, and from a family background that lacked violence, was tied to an overall ability to cope, and specifically access to information, services and support. Being rural, not white, in a job in which one had less personal control, from a home life in which one may have felt unsafe, meant more difficulty in advocacy, accessing necessary care, accurate information and maintaining one’s career trajectory. And all of this is important, and will be detailed in my forthcoming book (someday in the not too distant future). For those with acquired facial paralysis, the shift from “normal” to “other” resonated deeply as people struggled to adjust to what being an “other” means. For those with congenital facial paralysis, early assessments, family over or under-involvement, painful treatments, and a lack of clear information, shaped experiences.
But one thing that deeply resonated with me, as a sociologist of the body and a person with synkinesis, was the impact on identity and self, not because of the change in appearance, but because of the change in the experience of self. The experience of synkinesis is an experience of a disrupted self. And people with synkinesis described a certain level of angst that could not simply be explained by “how they looked” or by the new experience of the “other” they were now enjoying. It was beyond that. Ultimately, my own experience with synkinesis spurred me to ask a certain layer of questions, it might never have occurred to me to ask otherwise, because I was also living it. And I would explain the experience in this way. Self is an embodied experience. Pleasure, pain, love, hate, regret, anticipation, desire, these are all experienced in an embodied way, and facial expression plays a unique and integral role in this process for those who are born with that ability. And while place and time shape and normalize some forms of expression, once learned, those expressions are intimately tied to the experience and expression of self. Facial expression is tied to how we feel, and how we communicate, not only with others, but also with ourselves.
How is the experience of synkinesis disruptive?
Explicitly, miswiring of facial expressions means that every facial expression carries within it several problematic components. The spontaneous experience of self becomes an alienating experience. This is subtle and hard to understand.
When one engages in spontaneous communication, we mirror and mimic, the nonverbal occupying more of our interaction, than the verbal. Without conscious thought we slide into expressions of joy as our friend shares excitement over a triumph; or, feel our heart tug in empathy as our face falls with some sad news. We do this unconsciously and constantly as we communicate. For people with synkinesis, the normal unthought expressions are often “wrong.” This is jarring, and unsettling. The process of communication, of sharing emotional experience, the shared empathy, excitement, joy, and even pain, that make social interaction so gratifying, is something disrupted. I try to smile happily at the photos of your new niece, grandchild, puppy, car, vacation condo- whatever… To share your joy, to communicate my good will toward your good fortune, but my neck pulls. A trigger emotion for anxiety, anger, stress. My brain is tricked. For a moment a flash of the wrong feeling. What is wrong with me? Why can’t I just be happy for you? Wait, I am just happy for you… It was just the synkinesis… OK, wait, now where were we?
That moment of synkinesis, it’s a reminder. It’s a reminder of pain, of illness, of otherness… Of the biggest challenge in one’s life. One’s deepest source of anxiety. It’s involuntary…. People with synkinesis start to shut down. We have to. It’s overwhelming to have constant reminders and triggers for one of the biggest traumas in one’s life. It’s frustrating to constantly be triggered with emotions we don’t feel from an affect disrupted. It also undercuts those moments that should be joyful. And we shut down, and we try to feel, and express less, and that’s not healthy.
One respondent expressed this frustration so poignantly,
There’s an inability to share how you feel. To share social emotions. To have a social emotional experience. It’s like my expression is being forced into sad, and I don’t want to feel sad… I shouldn’t feel sad. But without my botox it all pulls down like I’m sad, so I start to feel sad. And I see in pictures, I look sad… So I just have to try to shut down a little…. I probably should talk to someone about this….
Expression becomes a reminder. Where I think a lot of people have issues, is the basic day to day life reminders. The big stuff, you can distract yourself, but when you’re doing basic things… Smiling at somebody, talking to somebody, laughing spontaneously, kissing your wife. I kiss my wife like 100 times a day, so that’s 100 reminders… All the time. I want to just feel loving, not feel the pull the wrong way… You drink- there goes your eye…. You laugh, there goes your neck and your eye… It’s the constant reminders that wear you down. After a while, you just try to find reasons and ways to not have that happen. You feel less, you express less…
The loss of spontaneous nonverbal communication is startling for those with acquired facial paralysis. For those with synkinesis, the additional layer of miscommunication or unintended communication exists. One person recounted not understanding why suddenly, no one smiled back, when she gave her customary smile on her morning jog. A friend had to tell her, that the friendly smile she thought she was giving, appeared as a painful grimace. Compensating with a friendly wave, was wonderful solution, but adjusting to expressions that miscommunicate takes some time. It’s also important to note, that for those with synkinesis, often the tightening of facial muscles that seems spectacularly distorting from an internal perspective, may be almost invisible to others. Being assured no one notices, is only marginally comforting, as that does little to address what the face is communicating to the brain. The tightening of synkinesis is so often what communicates stress and anxiety to the mind. So while we may be having a light fun conversation, half my face is triggering anxiety to my brain. This is disconcerting, and I am constantly working to manage this. To not communicate anxiety to you, to convince myself, you are not communicating something negative to me. That I am not as stressed and anxious as half my face is trying to convince my brain I am. Communication is now exhausting and intense as a result. Fatigue in communication was one of the most often voiced complaints. Almost everyone reported needing to do less of it. It took too much out of one.
As a result, people’s sense of self was disrupted. The experience of self, went from an unthought experience, to one of constant anxiety, produced by a physical mimic response, rather than an external fear, message or rejection (though in some cases that was present too). I can say it no more simply than the spontaneous moment of joy, that moment when you are laughing so hard tears are rolling down your face, and you wish it could last forever…. For me, in that moment, my face significantly distorted and it felt like my emotional core was slapped with a “wrong emotion.” And I have to fight to get back to joy, while I am also now trying to cover my face because somehow putting my hand over what feels so wrong will make it ok, but it doesn’t and now you are saying I look fine, but it wasn’t about how I looked. It was a hard jolt to the system. As real as a slap or a shake. It was an experience of self that was shaken. And now I don’t want to laugh like that. I just want it to stop. And it was so amazing to hear that from so many other people… And so deeply painful….
And finally, telling us we look fine, is lovely, and your heart is in the right place. But you missed the point. This giant internal experience of self disrupted. It’s real. And you just yadayadayada’d the most difficult, painful, soul crushing thing in someone’s life… It’s not that I worry so much about how you think I look, not that the awful photos that reveal that it looks even worse than we often imagine, but the constant interruptions, disruptions and blows to the self.
And even as someone who has put tremendous thought and research in this process, it can catch one off guard. In preparing for my upcoming surgery at the end of this month for my facial paralysis, I had to stop my botox. While stuck on this blog post I decided to take a break and bike up the hill. As I biked, I ruminated on my writer’s block, on a growing feeling of unease that I couldn’t identify that had been creeping over me for the last couple of weeks. Was I depressed? I’d never really been depressed, but I seemed to feel inexplicably sad, anxious and unsettled. No that wasn’t quite it, I felt like I should feel sad… Like I should feel stressed… But I don’t really… I feel like a wrong message is somehow telling me to feel stress to feel sad… A deep pull on the corner of my mouth…. Long pause..
Me to myself: So what’s one of your key finding about people with facial paralysis who also have synkinesis?
Myself back to me: That the misfiring of facial muscles leads to confusion and anxiety because facial muscles signal emotional state, so one’s fundamental sense of self and well being is disrupted in a profound way, but the cause is actually physiological and therefore botox and surgeries like selective neurolysis are actually a necessary, not cosmetic medical treatment….
Me to myself: And what wore off about one to two weeks ago… My botox…
Myself to me: Yes, my research findings are validated!!!! Damn I miss my botox…. (Insert happy research dance here).
That awesome moment when your own disrupted anxious state actually confirms key research findings!!!
Bodies, selves, experience are complicated!! But in the breaking of this process, lies some access to understandings that would elude the whole person. The subtleties of the relationship between expression, self, experience, identity and status would never have occurred to me if I didn’t have to live them. The self is social and physiological, and the self can be disrupted, damaged or disturbed. In addition, this disruption also highlights how much of the experience of otherness is an embodied unthought experience of subtle communications, that require deeper and more nuanced study. The larger project embraces the embodied state and experience of otherness, coping, and what it means to have a disability that impacts communication.
Author Bio: Faye Linda Wachs is a professor of Sociology in the Department of Psychology & Sociology at California State Polytechnic University, Pomona (Cal Poly Pomona). Dr. Wachs received her Phd in Sociology from the University of Southern California, along with a graduate certificate in gender studies. Dr. Wachs’ published work focuses on gender equity, health, fitness, media, sport, sexuality and consumerism. Her book, Body Panic: Gender, Health and the Selling of Fitness, co-authored with Shari Dworkin was the recipient of the North American Society for Sport Sociology (NASSS) Distinguished Book Award in 2010. She is the 2017 George P. Hart Award winner for outstanding faculty leadership, the California State Polytechnic University, Pomona 2012 Provost Award Winner for Distinguished Service as well as the 2009-10 Cal Poly Pomona College of Letters, Arts and Social Sciences Outstanding Advisor. Dr. Wachs is the former president of an international academic organization, the North American Society for Sport Sociology, and also served as secretary for the same organization. Dr. Wachs’ current research focuses on the impact of facial paralysis, innovative research methods, social media and identity and STEM Education. In her spare time, Dr. Wachs enjoys hiking, running, biking, sailing, knitting/crocheting/sewing and spending time with her family and dogs.