Now 47, SarahA lost her hearing and developed facial palsy more than twenty years ago, after surgery to remove bilateral acoustic neuromas. At long last, she’s on the path of recovering her smile. She has written poems about her experience and she shares one at the end of her story.
SarahA before facial palsy
I don’t regret a lot of things in my life, but the one thing I do regret is being a surly teenager and NOT smiling enough. I was born in 1965 with a condition called neurofibromatosis (NF2).
Although I had characteristics ‘café au lait’ spots, lumps and bumps, hearing loss, headaches and dizzy spells, I was not diagnosed until 1988, at the age of 23. Mainly because I had a way of hiding things and ignoring stuff, thinking it was all life’s parcel and package.
I was working in London as a nanny, in charge of a small boy. I blacked out on several occasions, and so I could no longer bury my head in the sand and put up with the excruciating headaches I had suffered from most of my life.
Fate! The GP I went to see knew straight away what might be wrong: neurofibromatosis type 2 (NF2). After my description of my headaches, and seeing and feeling my unwelcome friends (the lumps and bumps), he ordered a brain scan. The scan showed bilateral acoustic neuromas – benign tumours – growing on various nerves. The head is not that big a space for things to grow in, and these intruders had wrapped themselves round the right facial nerve and the hearing nerves on each side.
SarahA after facial palsy
Within several months, an operation was carried out to remove the right-sided neuroma, which was the larger of the two. The night before, I was told of the complications that would occur. But nothing can prepare you for the realities of life.
Family and friends who visited me did not appear to notice any change in my appearance. It wasn’t until a month later, when I was actually able to have a bath (a proper bath, that is: where you’re lying in warm water, instead of being soaped down in your bed), that I managed to catch a glimpse of myself in the hospital bathroom mirror and came face to face with the ‘Elephant Man’.
I kept looking, and then looking away, and then looking more. On and on, trying to search for SarahA, but she wasn’t there. And yet, I felt her in my body. I just could not see any of her in my face.
It would take me a long, long time to accept it – and then, never fully so.
The second acoustic neuroma was removed the following year. Although the facial nerve was damaged but still intact on the left side, I now had complete loss of hearing. This not hearing anything didn’t seem to bother me as much as not being able to cry or smile anymore. And the saying, ‘You don’t realise what you’ve got until it is gone,’ became more real.
SarahA
Stares from others. Whispers behind hands. Children following me in supermarkets, just to get a good look. Rejection. ‘Cheer up love, give us a smile.’ The cold winter wind felt within me, hugged me in the summer too. It felt particularly hard, coming from a very attractive family and living in a society where physical beauty is so prominent. I admit to being vain, and so this was a real kick in the teeth.
I have often thought since, that perhaps this is why all of this happened. To teach me that ‘beauty comes from within.’ But it’s so easy to say; harder to feel.
Botox injections to the unaffected side helped somewhat to balance my face, and a platinum chain weight in my right eyelid aided in blinking and closing my eye, to stop it becoming dry and sore; but this was as far as anyone could do. And some days it was enough. Yet other days, I so longed for the old, smiley SarahA. The one who could express how she felt, not just through words, but through emotions in her face.
It would be over twenty years later, at the age of 45, that I would be given a glimmer of hope: the hope of returning the many smiles that had been given to me over the years.
After being told for so long that there was nothing more that could be done for me, I was seen by a doctor who, by chance, knew of the Labbé technique. His referral to a plastic surgeon set me along the path of recovering my smile.
From others accounts, you will know what the Labbé technique entails, and so there is no need for me to go into lengthy details. I will just say, as it was a major operation, I was surprised to feel no pain; and the staff (from cleaners to senior consultants) were beyond praise. I will be forever in their debt. I had come from far away and had no visitors, yet was made to feel special by being looked after so well.
SarahA now
I will always remember waking up after the operation. The doctor who assisted the plastic surgeon was sitting by my bed. As soon as he saw me awake, he wrote on a piece of paper, ‘All went well. Mirror?’ Then he produced a mirror and proceeded to show me how the side of my mouth no longer drooped downwards. I hugged him!
I am still in muscular training, and there are still some days when I wonder if it is/was all worth it. Whether or not more could be done. I expect too much, perhaps, and forget the years of ridicule and isolation; that appears just a distant memory now. Those days are far and few between, though. I have come to understand how natural it is to feel this way, and that it is OK to do so; for I am not alone.
I am no longer afraid to go beyond the door to my house or travel distances on my own, visit unknown territories; or scared to talk to people who don’t know me. I have grown to love the person I am (imperfections and all) and in the process, show love to others too; through a smile, because of a smile. Yours and MINE.
Cold Skin (Loss of a Smile) by SarahA
When you died, I lost
A dream
Winter came, stayed
(Never left)
And
Happiness couldn’t find
Its way
To daylight’s growth
When you died, life
Stopped living
And hope
Was never (more then)
A word
On a blank page
*in a blank face *
My favourite ‘smile’ quotes…
‘Every time you smile at someone, it is an action of love, a gift to that person, a beautiful thing’ (Mother Teresa).
‘Sometimes your joy is the source of your smile, but sometimes your smile can be the source of your joy’ (Thich Nhat Hanh).
‘The world is like a mirror; frown at it, and it frowns at you. Smile and it smiles, too’ (Herbert Samuels).
‘A smile is the light in the window of your face that tells people you’re at home’ (author unknown).
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.
