Dan* was in his late thirties when the right side of his face became paralysed. He gives a fascinating insight into the physical and psychological metamorphosis that followed.
In Kafka’s Metamorphosis, Gregor Samsa wakes up one day to find himself transformed into a giant insect. In my own case, numbness in my jaw made me think that something was wrong. I put it down to an inflamed nerve or a dental problem until two days later, a nurse at the walk-in clinic told me the right side of my face was paralysed. This was on a Thursday. By the time I saw a consultant to start taking steroids to calm the inflammation, it was Monday – and it was too late.
I did not know what had happened. The medical staff knew that a facial nerve was damaged, but they did not know how it had happened, nor offered any timely treatment. I was left to deal with it myself. My life was changed negatively as a result.
The condition I’m referring to is Bell’s palsy.
I had, that same Monday morning, embarked on a new job as a communication support worker, and had been unable to say my name on gaining access at the college where I was supposed to do my first session. It was the beginning – and the end – of a career change I had been greatly looking forward to.
I should start by saying that I am no longer me. The person who went to the mirror rubbing his cheek and jaw has my name but not my identity: a person who once laughed and made others laugh with a physical repertoire that might at times have been called clownish. That person has gone, and lives on only in photo albums and memories.
Still, I consider myself fortunate: I had spent many years thinking and writing about identity and related matters, giving me an inner resource to turn to, and allowing me to articulate the impact of this hellish journey. Also, being in my late thirties, I was spared the sheer horror of going through my teens and twenties with a disfigurement. In addition, after years of going to GPs and hospital consultants with my own ever-expanding dossier on what could be done (information that was met with stunning indifference and disbelief), I was able to undertake a course of treatment at a specialist unit, which has had tremendous results to date, and for which I will always be grateful.
It is hard to understand what living with a disfigurement is like, and it is not easy to pin down why exactly Bell’s palsy is so devastating. In my own case, the initial setting was a bright, clear autumn, with a low sun that was constantly in my eyes, making me squint and go about with my hand raised all the time. You can’t close your eye; your nostril streams; you dribble from the side of your mouth; you gurn. How many Bell’s palsy sufferers must think of themselves as a living gargoyle as they slur their way through sentences holding their mouth in place so they can speak, aware that each smile comes out as a bizarre grimace, each laugh seemingly cruel or deranged. You can’t eat without holding your jaw. You drool and spill what is in your mouth. Sooner or later you go into hiding, either figuratively or for real.
You attend a wedding, sunlight and happiness in the air. Days like this, when loved ones are able to be together, make up the very flavour of our existence. And yet you can’t smile, you can’t join in as you wish to, can’t act on how you feel. Things are not in harmony any more, they are asymmetrical. In the photographs it looks like you were at a funeral – the funeral of the figure lying in bed while the insect goes disbelievingly to the mirror. It doesn’t get easier over time. The dread mounts event after event (work do’s, parties, dates) leaving you frozen whenever cameras are around, leading to a habitual freezing of the face which, unless you can stop it creeping in, begins to freeze other things: your mind, your hopes, your heart; your sense that you are you, that you are alive.
There will be no more jumping into a booth together at the train station; no more ‘one two three, cheese!’ No laughter of any kind without a hand raised instinctively. It is a long, slow avalanche of misery. In your previous life you acted with a degree of spontaneity, empathy, conviviality, but not now; at least that’s how it feels.
Without a malleable and supple face, you create the next best thing: the unmoving shield. In an era when your image can be captured and projected globally online in a few seconds, placed beside the smiling faces of others, you hold onto that shield for all you are worth. What other Bell’s palsy sufferers go through, retreating, running from the squinting, drooling, lopsided image of themselves, I can only imagine. What I do know is that bringing awareness is crucial in preventing the effects of the disease from destroying the person, or personality, that is left behind. So let’s go back to how it all began…
I did not know what had happened: Typing a few relevant search words on the web might have brought up the Facial Palsy UK website, had it been available at that time, giving me some indication of what was going on. My hope is that through the existence of this site, people in the same situation, going to the mirror in shock and despair, can get the early guidance they need in order to understand what is happening – and what can be done.
The medical staff knew that a facial nerve was damaged, but they did not know how it had happened, nor offered any timely treatment: This is not good enough, not for a ruinous condition like this. Better awareness of Bell’s palsy by the medical profession is critical: it is not a cosmetic issue. It is connected to the very roots of what a person is and how they interact with others and the surrounding world.
I was left to deal with it myself: Treatments are available, but again, unless there is widespread medical understanding about this condition, based on rigorous and ongoing research, only a random assortment of affected individuals will get any chance of help, whilst the rest of the Bell’s palsy patients are condemned to the prospect of lifelong social and career difficulties and personal isolation, the results of which are as destructive as the development of a private addiction.
My life was changed negatively as a result: Having Bells’ palsy is like losing the core of your identity through a cruel joke. And yet I consider myself one of the lucky ones: I was picked out of the NHS lottery before too many years had gone by, and given a chance to amend the worst of the damage.
If you have come to this website because something abnormal has happened to your face, I hope this article, as well as others on the site, can help. Get busy getting well, believe in yourself and fight for yourself – there is treatment out there – and if things are looking dark, get in touch with other Bell’s people: chances are they’ll understand you when others won’t.
(Written by Dan* of London, June 2012).
*name has been changed for confidentiality reasons
Last reviewed: 22-10-2016 || Next review due: 22-10-2018