I walked into the bathroom, looked into the mirror, and realised that the reason my face felt odd was that half of it had simply stopped moving. The eye on that side would not blink, that side of my mouth would not smile or frown or anything.

I was petrified. Was I having a stroke? I forced myself to calm down. I decided I probably was not having a stroke, but I had no idea what was happening and it was all weird enough that I decided to see a doctor, as soon as possible.

A few hours later found me sitting in the doctor’s waiting room, the unknown situation making it very hard not to panic. It was bizarre. When I smiled only the right side of my mouth moved. I could only talk in a slurring fashion out of the right. I could not eat or drink without drooling. My eye would not close unless I closed it with a finger. What on earth was going on?

Well, the doctor soon told me. Bell’s Palsy, he said. The name sounded vaguely familiar, but I didn’t know anything about it. It’s not serious, he said, but there’s no way to know when it will get better. It could be days, weeks or even months. I’m voting for days, I said. He thought this was funny.

It really wasn’t funny at all.

I was sent home with a five-day course of steroids, some drops for my eye (which was in danger of drying out) and a medical certificate for that day. I didn’t ask any of the right questions, because I was still in shock. It wasn’t until the next day, Saturday, when I started to wonder how I was going to speak to clients at my job. Apparently, it hadn’t occurred to the doctor to ask about this. Maybe it was going to be okay by Monday, I thought.

It wasn’t okay by Monday.

I explained matters to my supervisor, and muddled through as best I could until Thursday (when I don’t work) and went back to the doctor. The one I’d seen the previous week was not available, so I saw another one. I asked for some kind of letter for my employer, to explain what was wrong with me and that I could not take calls. She wrote a medical certificate for 1 week, exempting me from that work. By that time, I had done some research and had a bit more of an idea about the condition. I knew there was no way she could just assume it would all be over by then. She said if I needed more time I should come back (incurring another fee, of course.) She told me that the exhaustion I was feeling was not a symptom. (I found out later this was incorrect.) Bell’s Palsy was a ‘completely ordinary’ ailment, according to her, and there was nothing to stress over. I said I can’t talk without sounding drunk, I can’t eat or drink without dribbling, and my face looks lopsided. (I hadn’t even mentioned the pain I was in.) I said as far I was concerned, I had plenty to stress about. She laughed.

Why do these doctors keep laughing?

Roll on another week and back I went to the doctor. Encouragingly, I had some minor improvement, but I did not feel like I was going to be able to do the phone work at my job just yet. Not so encouraging, I also was in quite extraordinary amounts of pain, and normal pain relief was barely touching it. I was able to see, for the first time, my regular doctor, who had not been available on my first two visits.

I told him where I was at and what I needed, and he asked me if I was still taking prednisone. No, I told him. Doctor number 1 had said take 1 ½ tablets for three days, 1 tablet for two days, and then stop. I then discovered that this was completely wrong, and I should have been on it for two weeks. I should also have been on sick leave. Neither of the other doctors I had seen offered this. So, we started again. Doctor ‘I’m not taking this seriously’ from a fortnight before, may have diagnosed me, but he didn’t prescribe appropriate treatment. Awesome.

I got strong pain killers. They helped.

I’ve been one of the lucky ones who has recovered relatively quickly. The majority of symptoms had gone in about three weeks. I have some intermittent pain, as well as random muscle and nerve twitching, but nothing anyone else would notice. I am beyond grateful for this, as I was aware it could have been so much worse.

It raised a couple of interesting questions for me, though. I did a lot of research as I wasn’t getting told much of use by the doctors I saw, and I noticed a lot of sufferers being distressed because they had ‘lost their smile’. That’s fair enough, but it wasn’t my problem. I honestly could not care about my smile. I was far more distressed by my inability to speak. It was difficult to leave the house, because I knew the moment I had to speak to anyone or even react to anything my situation was going to be immediately obvious. I may not care about my smile, but I did care about being stared at. The steroids themselves had side effects, the main one being insomnia, making me even more exhausted and less functional. I remember at one point walking into my bathroom and looking in the mirror. I could barely recognize the face I was looking at. It wasn’t about smiling or otherwise – it just looked wrong, lopsided, distorted somehow. There is something very scary about looking in a mirror and not seeing yourself.

 I joined an online group for the condition, so I was able to read about other people’s experiences with this. It is so easy to lose your self-confidence, your sense of identity, along with your face.  I have heard stories from people who can’t bear to have their photos taken, people who can barely cope with leaving the house, young people who think they cannot make loving connections at a time in their lives when they are looking for a life partner. Some of these people experience ongoing symptoms for months, or even years, so it is not an unreasonable concern. After all, how do humans identify each other? The main way is, of course, facial recognition. So, if you can barely recognize yourself, how do you cope with the fear that you are not recognizable? How do you communicate with the world when you cannot speak intelligibly? How do you kiss your partner when your mouth will not kiss?

Should we identify ourselves by our faces? Probably not, but we are visual creatures, and we live in a world where we are evaluated and judged by what can be seen.

I trust and hope that I will never experience this bizarre and awful condition again. For all those who do experience it, or anything like it, I pray that you come through it, to a new understanding of your own sense of self, your own identity. May we all learn to look past the externals, to what lies beneath.

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