An acoustic neuroma and the surgery that removed it destroyed Sara’s auditory and vestibular nerve (affecting balance and hearing) and damaged her facial nerve on one side. She reflects on the devastation this wreaked in her life.
For a brief period in the summer of 2007 (five days to be precise), I experienced the joys of ‘having it all’. I was coming to the end of my maternity leave, which was itself a rather unexpected event; I’d conceived in the classic ‘last month of trying’ following a series of miscarriages and even more amazingly, my daughter had turned out to be just the loveliest baby in the whole wide world. I was due to return to my dream job, and had just heard I’d been awarded a fair-size research grant by which I hoped to make amends for having got pregnant the minute I’d been offered the post. Life was looking rosy. I was relishing being happy at last: a late starter, at 43 I’d got my wish list all ticked off, just in time.
Then I breezed into hospital for the results of an MRI scan I’d almost forgotten about, and was told that I had a brain tumour.
I suppose I should say that an acoustic neuroma is classed as benign, although personally I refuse to use that descriptor given its effects on my life. It had already severed my vestibular (balance) nerve: a year later, in 2008, the operation to remove it eliminated my hearing and badly damaged my facial nerve on one side. On the affected half of my face, the limited recovery of movement I’ve had since then can’t fill out my wasted cheek or lift the corner of my mouth from its permanent sour grimace; it resembles the sunken death mask of my still-mobile other side.
I’m humbly grateful for the amazing NHS care I’ve received, all the way along, on so many counts.
I really do not know how I would have coped without the facial palsy clinic in particular, which gave me a focus, some optimism about the future when I felt only despair, and ways of dealing with the troubling and ever-changing functional effects of facial palsy related to eating, drinking, speaking, synkinesis, dry eye and much else. I didn’t even realise at the time how lucky I was to be referred and receive treatment there, relatively quickly, rather than being told that there was nothing that could be done, as were so many others in the past and even now.
Having that support has given me space to reflect on the psychological devastation facial palsy has wrought in my life. These days, photographs of myself make me double up and howl in pain. And although I’ve been bereaved, I do not know how this particular mourning – for a smile, for the shape of a face, losses for which I am the only one to cry – will ever end.
I’ve thought a lot about this question: what’s in a smile?
Here are some of my individual, personal answers:
My smile was my mother’s smile.
When I think of my mother, I remember her smile, the reassurance it offered as I waved goodbye in the morning, how it welcomed me home in the evening. She died when I was 18, but I carried her with me in my smile; a physical trace that made me feel she wasn’t lost entirely to me. So when I lost my smile, I lost my mother in one final way and I grieved for her again.
My smile told me I could survive.
All through my unhappy, despairing times, I would still smile at myself in the mirror and imagine my reflection saying back to me, it’s OK, we can get through this. The night before my surgery, the mirror in the hospital bathroom beamed back its message of courage and hope. So when I lost my smile, I also lost a key coping mechanism, and my capacity to imagine a better future.
I wanted to give my smile to my daughter. I wanted her to know the joy she gave me and I smiled at her with such delight, every day of her life, those two short years between her birth and my operation. So when I lost my smile, I felt a failure as a mother. Contemporary family photographs tend to show parents beaming as they embrace their child(ren), and they all stab me through the heart – the wide-open smile and rows of exposed teeth somehow the measure of parental love, pride and joy against which I feel I shall forever fall short.
People seem particularly discomfited by my grief, although a precious few, like my partner, know that simply being able to hear it is enough. One of the curious consequences of undergoing a traumatic life event is that many people simply stop asking you how you are, as if afraid of what the response might be. But even more stalwart friends have sometimes been at a loss, trying to hasten my passage through sorrow by issuing advice that feels more like judgement than support: ‘Be positive.’ ‘It’s your attitude, not your face, that’s the problem,’ they say. Or, ‘We’re all ageing and losing our looks, it’s just like you’ve got there 20 years earlier. Be our role model!’ If the fault lies with me, my superficiality or incorrect thinking, then there is less need to ask any awkward questions about the social and gendered meanings of appearance, the double bind imposed on women, in particular: be beautiful (take pride, care just enough to work at it), but don’t be vain. (Don’t get caught looking in that mirror.)
But let’s get awkward anyway. In feminist consciousness-raising groups of the 1960s and 70s, women asked each other: why do we smile so much? Is it really a ‘choice’? And who and what can a woman be, without a smile?
The politics of smiling is not necessarily a happy one. Questioning who smiles, what choice they have, who is asked by whom to smile, provides a guide to who lacks power and status in contemporary society: children, from whom the parent seeks and needs evidence of their ‘happy childhood’; women, whose compliance is demanded (‘C’mon love, give us a smile!’) and whose refusal to see the ‘funny side’ of harassment constitutes an affront; the ‘happy’ slaves and ‘carefree’ natives that are the legacies of colonialism and imperial oppression. Who has the right to ask the powerful – the judge, CEO, doctor, surgeon, professor, the white man – to smile? MPs prove the rule here. Statesmanship generally demands solemnity, but at election time all those jolly photo ops, handshaking and kissing babies, sustain the myth of democracy: your elected representatives are merely ‘servants of the people’; see them smile for you.
So I tried to re-think my smile in these terms: did it attempt to placate and appease, to defuse the threat that my intelligence might otherwise pose, to apologise for an existence to which I somehow felt I didn’t have the right?
This kind of analysis doesn’t soothe away my grief and pain, although it helps shed light on why such intense emotions are so persistent.
And it’s beginning to help me formulate different questions. Not the ones that torture me, which I fear will never permit an affirmative answer, such as: can I learn to love my face without its smile? Will I stop being obsessed about my appearance? Will I ever be happy again?
But instead: can I be powerful, can I be intelligent, can I take up space in the world, without a smile?
Disclaimer: Please note that views expressed are person’s own and should not be considered a recommendation of particular medical treatments, therapies or surgeries. We would always advise you seek advice from a health professional with experience in facial palsy who can assess your individual needs.