You might be looking at the title of his post and saying, “Say what?”
See, last night I read Brain on Fire: My Month of Madness by Susannah Cahalan. In it, she tells of her experience with anti-NMDA receptor encephalitis. I couldn’t help but see some similarities between her journey and mine.
First of all, we are both journalists — I’m an editor for the Democrat-Gazette, she is a reporter for the New York Post.
Our noticeable health problems started with a migraine, then a seizure. While her neurologist thought her seizures were from alcohol withdrawal, the neuros at the hospital thought I was suffering from viral meningitis. We were both initially prescribed Keppra as an anti-seizure drug. We both experienced pins and needles in our hands.
That is pretty much where the similarities ended though — thankfully.
She goes from that into total madness. Paranoia, hallucinations, manic episodes, depression, slurred speech, difficulty walking, loss of the ability to read or write — by the time she is diagnosed (in her third or fourth week of hospitalization) she is probably days from death. In order to confirm the diagnosis, she had to have a brain biopsy.
Once she is diagnosed, the treatment starts — and she is one of the lucky ones who responds to it. But she has a long road back to normalcy and to reclaiming her identity — what made her her. During her month of madness (and for quite some time afterwards) her loved ones wondered if she was still there. They would see glimpses of the person she was, but she couldn’t escape the prison that her brain had made of her body.
The author goes through some seriously scary stuff. And like MS, anti-NMDA receptor encephalitis is at its core brain inflammation. Our immune systems go haywire and start attacking our brains. In my case, lesions form. In hers, the entire right hemisphere of her brain was on fire, as the doctor put it.
Just wow. I have to say that after reading Brain on Fire, I’m feeling better about my new brain lesion. It still sucks, don’t get me wrong, but it could be worse. I’m still me — and that matters a lot.