Via The Guardian, a fascinating and horrifying account by Simon Hattenstone: It's World Encephalitis Day. But to survivors like me today is Look After Your Brain Day. Excerpt:
Today is World Encephalitis Day, the perfect time to think what it means to think, and to thank your brain for all that it does for you without a second thought (so to speak). Encephalitis is inflammation of the brain caused by infection (usually viral) or by an inappropriate auto-immune response to the brain. There are now 500,000 people affected worldwide each year, including up to 6,000 in England. In 2010, encephalitis caused an estimated 120,000 deaths.
After falling off the bike and waking up one day with a high temperature, a stiff neck and a horrific pain drilling through my eyes, I didn't go back to school for two years, and it was three years before I was back in a regular school. When not in hospital, I lay in bed in a dark room, curtains shut, windows closed, lights off, hermetically sealed from the world. I didn't see friends, didn't listen to music, didn't watch TV.
I underwent an extreme personality change, wrote poems about the electric pain going through my brain, couldn't see straight, always felt sick, became anorexic, got pneumonia into the bargain because my immune system broke down, couldn't piss properly, couldn't shit properly, couldn't stop hiccupping for months, became angry and surly, had a constant high temperature, developed such a severe sore throat that it resulted in a hole in my palate, thought I had gone mad, was put on antidepressants, and sent to a psychiatrist who hated the world with a passion.
On top of this the doctor speculated that my mother was suffering from Munchausen by proxy, and that I was a victim of her condition.
I was one of the lucky ones – I was left with mild depression and constant headaches for years. The unlucky ones were deaf, disabled, epileptic, amnesiac, aphasic or dead.
Encephalitis is such a cruel disease because it is often misdiagnosed – even today. And that delay in diagnosis can have fatal consequences. Again, I was lucky – when I was correctly diagnosed more than a year after becoming ill, my brilliant brain surgeon said I'd made history – having survived so long with a low-grade version of encephalitis without popping my clogs.
As for the doctor who told me I was a malingerer and that it was all my mother's fault – well, we decided it was time to look for a new family GP.