The 22nd February 2017 is World Encephalitis Day, the global awareness day for people who are directly or indirectly affected by encephalitis. I had no idea what encephalitis was until Sarah was diagnosed. I’d watched Sarah grow up from being a little girl for over 20 years so I was deeply shocked to hear of her illness.
Sarah has found painting and writing poetry a way of raising awareness of her illness. I’ve had the privilege of giving Sarah some drawing lessons to help her develop her growing skills in this area. Earlier this year I asked Sarah if she would like to sit for me to have her portrait painted so that I could play my part in helping folk understand more about encephalitis. The portrait was painted in oils over three sittings using a sight size method.
We decided together that Sarah would wear her laboratory coat as a reminder of her training as a chemist and that we would keep the background stark and clinical as a reference to her illness and treatment.
I’ve asked Sarah to write a few words about her story so that we can try to understand what it must be like for her. As it’s World Encephalitis Day 22nd, the Millennium Bridge is going to be lit red. I’ll be joining Sarah and her mum at 7pm as they hand out flyers.
Behind the Smile by Sarah Galloway
A picture says a thousand words, though a thousand words may be insufficient to paint the picture of my story. I’ll try sticking to roughly five hundred instead.
I am 26, a chemist by training though dabbling in art myself as a trade. This portrait was painted after four years of serious illness. Four years of psychotic episodes, spontaneous self-harm and memory loss. Four years of utter hell.
So what’s the problem? A portrait seems quite fitting for this as it is quite literally all in my head. My body has been attacking parts of my brain causing it to swell. This is known as encephalitis.
At 22 I found myself lost and utterly undone. It is hard to go into detail about the events of that time, partly because I genuinely don’t remember, and partly because it is simply too shocking to want to think about. Let’s agree on one thing…psychosis sucks. It is a thief that drags away your security, identity and stability and leaves you hollow, confused and empty.
I have spent the last four years battling hallucinations and dramatic emotional outbursts. I have seen and felt spider’s legs on my torso, worms in my mouth and teeth on my neck. My sequencing became so bad that I would shower with my clothes on by accident. Socially I was unable to focus or remember what people were saying. It has been frightening and frustrating.
I was incredibly moved when Alan asked to paint this portrait. Raising awareness about encephalitis has been my main motivation this year and it was amazing to see this shared by a friend.
As I was part way through a relapse and also experiencing nerve pain down one leg I found it very challenging to sit still for the actual painting itself. Holding a smile is also quite difficult!
The smile was deliberate. Encephalitis can be like having an invisible illness. Most of the time, to most people, I can seem perfectly normal. My natural setting is a smile and it has sometimes become like a mask. Encephalitis can be very personal and painful to talk about so it is better to deflect then have to delve into it all with everyone.
Some people however have been complete rocks in my life. My family and my closest friends have been sources of comfort and confidence. My faith has been another stable place in which I can stand against encephalitis. For these I am eternally grateful.
The more people that know about it the easier it will be to find and fight this disease! Encephalitis is happening all the time. I, like many others, was misdiagnosed at first. My recovery is based on a fortunate research trial. The right treatment at the right time can literally save a life.