It’s been four years since I lost my face. The one I was born with. The one in my school photos and in the pre-selfie days of social photos.
I have a new one, it’s true. The eye squinting and tight, the neck muscles straining beisde the affected ear. The grimacing smile, the half-kiss.
I loved to joke and smile and laugh— but now laughter is literally, painful— my smile looks like a grimace, and my attempts to dress up, take into account the state of my face. My voice has changed, speaking becomes tiring, and I sometimes slur my words when overtired or stressed. The headaches are frequent.
I rarely look in the mirror, and reading the accounts of many Bell’s sufferers, very few of us do. I have not only entered my mid-life, but the the invisible life afforded to women of a certain age and appearance.
Learning to live with intrusive stares and comments over the past few years has been a life-changer. i have learned a lot about cultural responses to facial disfigurement and disability. In Canada, people stare but rarely comment, except to ask if i have had a stroke.
British reserve and colonial coldness generally merge, even in the medical profession. When I went to the Emergency Room, I do remember the doctor telling me that our former Prime Minister Jean Chretien and late Quebecois politician, Rene Levesque, had suffered Bell’s Palsy. Not particularly sympathetic or encouraging words for a relatively young woman, even one who is not white. But I see that my non-whiteness has afforded me a level of medical care far below white women of my education and social status.
In contrast, Mexico showed me a different approach to disability— many strangers came to speak to me about Bell’s Palsy, many people reassured me that things would get better, and in a land of stress and poverty, many people had familiarity with bell’s palsy. In a way, it was a relief to be there during the height of my disfigurement. A much kinder environment.
I heard many compliments as my face began to lose the excessive tightness and paralysis, all of which encouraged a mind /body harrmony in the spirit of “getting better”. And indeed, my time in Mexico showed me the resilience of the human body and mind.
A second untreated relapse during a bizarre surgical experience, has resulted in permanent sykenisis. This is a condition of overactive muscles and nerves, where the healing of the previously damaged area has led to “crossed wires”. The solution to pain and tightness is then relaxation of overactive nerves and muscles, not the regeneration of nerves which is the first stage of healing from Bell’s Palsy. About 10-15 percent of people with Bell’s Palsy sustain permanent damage and synkinesis.
Bell’s Palsy has been linked to chronic Lyme disease in the 21st century, but before that, it’s aetiology was rather vague. Often affecting pregnant women, women in labour, small infants, and people experiencing extremely high stress, it’s becoming discussed more and more on Lyme websites and boards. Some famous celebrities have had the more common form of Bell’s— that experienced by 85-90 percent of the afflicted who experience spontaneous healing and regeneration of the seventh facial nerve.
This is the first time I have written about any aspect of my disabilities. And it is an important one, because in our superficial world, we are rarely given a second chance on our appearances. And when such an ethos is fueled by the discriminations of race, sexuality, etc. it is important to face the situation “head on”.
By calling out discrimination based on disability, we begin to envision a world where our faces are as beautiful as our hearts— not our looks.