Elizabeth’s Story

Elizabeth just before RHS struck

The Little Things – is my facial palsy just a little thing that I need to accept as no big deal because it could be worse?

As the theme for Facial Palsy Awareness Week 2022 is ‘The Little Things’ I began to reflect on who I am now and who I was before I acquired facial palsy (fp).

There are some little things that even some of my closest friends don’t know about me.

I was born on the 27 May 1961 ….in Fiji …in a car, a blue Ford Prefect to be precise. I didn’t become an Australian citizen until I was in my early twenties despite having lived there since I was a year old.

I only became an Australian citizen so I could teach in France as a high school English language assistante. I ended up living in Paris for five years lecturing in Legal English and Political Science at the Sorbonne. Whilst in Paris I fell in love! In love with everything French – the language, the food, the wine, the culture and dancing. Nearly every Thursday night I could be found dancing swing to the hip sounds of a jazz band in an underground night club – the type you see in movies.

My love of French as well of as dance continued upon returning to live in Sydney. Most people know that I continued my career as a French language teacher, but even most of my friends don’t know that I worked in the French department at the University where I earned my degree.

I own a Djembe. That’s because I used to belong to a West African drumming circle. That led to then learning the frenetic energetic moves of West African dancing.

Friends described me as confident, outgoing and vivacious with big sparkling eyes and a huge smile that lit up a room. I never left the house without makeup on and loved dressing up! The higher the heels the better. I’ve never been married; I have no children. My sister is not just my younger sister, but my best friend and I have always been her rock. When I helped deliver my nephew  eighteen years ago, he became the centre of my universe. As he became older, his friends saw me as the crazy, fun surrogate auntie figure – always laughing and telling stories. I always joked that I would be just like Auntie Mame from the movie of the same name, having an unbreakable bond with my nephew and sharing playful adventures. Oh, and yes. I’m a serious film buff and avid reader.

Little things, maybe quirky things that most people don’t know about me. A lot of friends did know these little things about me, but they aren’t part of my life anymore. And that’s another story.

Ramsay Hunt syndrome struck

You see, my whole life changed seven years ago on January 15, 2015. There was a storm brewing. But this was no ordinary storm. And it wasn’t a little storm – it was a big storm, and it was brewing inside my brain. I didn’t know at the time, but the storm was the reactivation of the varicella virus – the virus that lies dormant in the body after having chickenpox as a child. The virus lies dormant and just like the weather when the conditions are right it turns into the electrical storm called shingles – and then it ripped through the left side of my brain like a hurricane leaving nothing but destruction in its path.

The first indication that the storm was brewing was an excruciating earache and toothache on the left side of my face. I managed to get an emergency doctor’s appointment – only to be told ‘nothing is wrong’. The next indication was when the cyclone hit. I woke up at 4 am and went to splash water on my face and drink from the bathroom tap only to have the water run down my face. I turned on the bathroom light and that’s when I knew I was in trouble. The whole left side of my face was frozen, and I couldn’t smile.

Taping eye closed

Jumping ahead I spent eight hours in Emergency with what was originally thought to be Bell’s palsy after ruling out a stroke. During those eight hours the eye of the cyclone raged, and my symptoms got worse. I couldn’t blink or close my eye or move any of the facial muscles on the left side of my face. The pain in my inner ear was excruciating. It felt like my brain on that side was on fire. I couldn’t hear anything but was told that was because of the pain. And I was denied painkillers – but that’s a whole other story. Eventually a rescue crew aka two neurosurgeons, came to deliver the diagnosis – Ramsay Hunt Syndrome (RHS). I found myself plunged into a medical world I never knew existed that I’m now all too familiar with, with words such as  shingles, geniculate ganglion, House-Brackman scale, post-herpetic neuralgia, paresis, neurology, and facial and cranial function. That was before I’d even left the hospital with nothing but a script for prednisone and antivirals and the advice – see your doctor you need an MRI asap, the left side of your face is 95% paralysed oh, and by the way, get some eye drops and tape your eye shut. Considering it was 6.00 pm Friday evening at this stage I wasn’t quite sure how that could happen. Looking back I think that was the beginning of my advocacy journey – and how little things such as getting referrals and being taken seriously became not just big things but almost monumental tasks.

After being discharged from hospital – that’s when the nightmare started and my personal, professional, physical, social, emotional and psychological world changed.

To the outsider looking in what I’m going to talk about may seem like little things. And on their own – they are! I acknowledge that ‘it could be worse’. Somewhere at any time there will always be someone fighting something worse. Having facial palsy won’t kill me. But it has changed me. This is my journey, my truth, my experience and although at times they are only little things – they all add up.

Microaggressions were something I’d never heard of, let alone encountered. As a teacher I was never lost for words and was used to using humour to deflect and diffuse. Until now.

Elizabeth’s face at rest

“What’s wrong with your face?” “Why do you look so angry all the time?” “God gave you this to make you a better person.” “Elizabeth, you’re so hypersensitive – there’s nothing wrong with your face!” “I knew you were weird; I just didn’t know why!” “Oh, do you have Bell’s palsy? My uncle had that! and HE got better.” “Have you tried….?” Little comments, some of it well meaning, some of it just insensitive, but constantly having to explain my facial difference –I find it tiring and sometimes embarrassing. Fortunately, I’ve been able to dig deep and change my mindset to become an advocate, determined to educate and ignore these comments, but seven years on the little comments can still chip away at my confidence.

The comment that still hurts the most about my facial palsy is “Seriously, I don’t notice it! I can hardly see it!”

It’s meant as a compliment and to encourage my self-confidence. On a day like today when Botox injections have kicked in and my resting face looks symmetrical, and my eye is not closed – its kind of true – it can’t be ‘noticed’. But I notice it every day, all the little changes it’s made to my life, and it’s not from looking in the mirror.

It starts from the moment I wake up. My left eye is all crusty from dried eye ointment and takes a while to open. The first thing I’m conscious of is the pain in my face, often exacerbated if I’ve slept on my FP side. Synkinesis means that my face is in a constant tug-of-war with muscles trying to vie for attention and my facial nerves constantly twitch. As I try to yawn to stretch my face – my jaw clicks, always the reminder of my TMJ (jaw disorder). The morning starts with a coffee. Thankfully I can now drink from the cup. Drinking hot coffee through a plastic straw just isn’t the same as that coffee hug from a mug! Shower time. I always dread the days I need to wash my hair. That was one of the reasons I got my long hair cut short. The weight of my hair hurt my head and face and it took too long to wash while trying to balance in the shower with one eye covered, so shampoo didn’t get in it. Shampoo still stings my eye, but I’ve managed to adapt my hair washing techniques! I’ve also adapted my tooth brushing technique – in the shower with my mouth open to let the water run through and rinse my mouth as I can’t rinse and spit.

Struggling to close one eye

Then it’s time to get ready for the day. I can’t say get ready for work as I was forced into early retirement. What? Why? Just because you’ve lost the ability to fully smile – you can still give a little smile even if it’s not a big smile I can hear people saying.

And that’s true. What many people don’t perhaps understand is how facial palsy can affect one’s speech. Not only did I develop a stammer, but aspirated sounds such as ‘B,P, F and V and S were difficult to pronounce, and my speech became slurred, and I dribbled. The cruel irony of having difficulty in pronouncing the very condition I was suffering from (and yes, at the beginning I was suffering) didn’t escape me. Separate to my facial palsy, but not separate from my medical diagnosis was, and still is, my complete loss of hearing on my affected side as the shingles had crushed my auditory and vestibular nerve. I developed severe tinnitus in my deaf ear – another cruel irony when you can’t hear but a constant cacophony plays out –  and hyperacusis in my right ear. This meant sounds coming into my right ear were amplified and even hurt. I couldn’t monitor the pitch or volume of my voice – so I tended to speak loudly. The speech and hearing impairments, combined with chronic dizziness and vertigo, made it impossible to teach. So overnight I found myself going from a respected and liked French teacher to someone suddenly being treated as if I were intellectually and physically disabled. The world of being judged on my facial difference and my unsteady gait became a harsh reality. I could no longer work and that little thing I was supposedly ‘hypersensitive’ about, called my face, caused my world to come crashing down. Going out brought on anxiety and panic attacks. I was no longer the rock to my sister and the fun auntie. My sister became my rock and my protector and my nephew wanted to know how he could help me. I cried a lot. Fortunately, relationships have repaired stronger than ever, but I still feel twinges of sadness that he had to witness the changes in me. I refused to be in photos, and it was only after my sister broke down in tears one day asking why I never wanted to be in a photograph with her that I realised I was pushing those closest to me away. Fortunately, I’ve managed to master the art of working the smirk and the head tilt. I’m always taking selfies with her now.

Life after Ramsay Hunt syndrome

Dressing up has largely become a thing of the past. I rarely wear makeup anymore as I end up looking like a drowned panda. And if makeup gets in my eye, it stings so much that it takes a special occasion for me to bother. The bright red lipstick I used to wear looks like the Joker’s smear. It’s a little thing, I know, but it affects my self-esteem and adds to the sense of loss – the loss of self and identity – once glamorous – now I strive for earthy. Especially after a friend told me that wearing makeup only drew attention to my face and I needed to stop being so vain. A little comment but it hurt big time.

Nearly every top I own is covered in stains. Holding certain foods in my mouth is impossible and I tend to dribble when I eat. Thank goodness for stain removers and tea towels as serviettes! At least I can now taste food. RHS can affect one’s sense of taste and for ages everything tasted like cardboard.

Speaking of eating – the inside of my cheek on the FP side is often bleeding and scar tissue is building up as I constantly bite the inside of my cheek. It’s changed my love of food. Eating out is no longer a pleasure and going to the pub for a juicy thick steak or a hamburger is a thing of the past – I can’t open my mouth wide enough. It’s a little thing, I know – there’s plenty of food I can eat but it’s the little pleasures in life that have been taken away that serve as daily reminders of my FP.

I was once asked why my handbags are always so big. And that’s because apart from the essentials such as wallet, phone and keys I now carry extra tissues for my constantly watering eye, my own metal straw that expands, a cutlery set so I know I will be able to fit a fork in my mouth, eye drops, my meds, and my sunglasses. Not my fashionable high brand ones I used to wear. But big black wraparounds to keep the sun and dust out of my eye. And a spray bottle of water to keep my face cool. In the Australian heat my facial and cranial nerves go haywire and one side of my face and skull feels like its being zapped by electrical currents. If it’s winter I carry an extra scarf in my bag that I can wrap around my face to protect it from the cold and the wind.

I don’t go out much anymore. Because of my vestibular issues I no longer play my Djembe or dance. I don’t read as much anymore either. It hurts my eye and I find it hard to concentrate. Surprisingly though I devour medical articles and even facial nerve textbooks. I rarely speak French anymore, but I feel like I’ve learnt a new language, the language of the brain and facial nerves and causes of facial palsy. It’s amazing what spellcheck now recognises on my phone – buccinator, zygomatic, synkinesis, neuralgia.

Elizabeth now

There is so much more, so many little things that acquiring facial palsy has changed in my life. I mentioned at the beginning of my story that there were friends who weren’t part of my life anymore. Little by little, and sometimes quickly, friends dropped off as they couldn’t accept the ‘new me’. They wanted the old Elizabeth back. The one who smiled and laughed all the time. I know that if anyone has made it this far, they might be thinking I’m negative and indulging in a pity party. I rarely talk about these little things. But here’s the truth. I hate my syndrome; I hate my hearing loss and I even at times hate how I look. Acquiring facial palsy changed my life. After I lived through all the five different stages of grief and loss, I reached acceptance. And now I live the sixth stage. Making sense of what happened to me and finding a purpose in life. Five years ago I started an online support group for people with facial paralysis. I advocate for and support others going through similar journeys. I like who I am – the person I’ve become. And the best part? I  have friends – hundreds of them across the world. People I couldn’t imagine not being part of  my life. Facial palsy is what connects us, but it doesn’t define us. We ‘get each other’. There are people that I’ve had the pleasure of meeting within Australia and across the world. My closest friends, my soul sisters are from the facial palsy community. We are a tribe – we are warriors – we are unique – we are survivors.

And amongst all of this it was Facial Palsy UK who saved me. But that’s for the next essay!

Hopefully after reading this story anyone without facial palsy, and even others with facial palsy might feel that its okay to feel and to say that having facial palsy, no matter how ‘little’ or ‘big” whether acquired or congenital, is no little thing. Even though it affects everyone differently – facial palsy is a big thing and empathy, and understanding is required – especially from the medical profession.