Brain on Fire is the true story of a woman who suffers a potentially deadly disease, this book recounts the onset, diagnosis and treatment of her condition.
The medical condition talked about in this book has only recently been diagnosed, and it starts off with very subtle cues that can often be dismissed. But it rapidly progresses, leaving the patient unable to control their body or their mind. As I read this I tried to envision what this would be like. The closest I got? I am one of those people who didn’t particularly like being pregnant because I didn’t feel like I was in control of my body. Admittedly that experience was minor, but even things like being too exhausted to get off the couch were infuriating to me because I couldn’t control it. I couldn’t stop it. And I didn’t like not having the ability to overcome the physical limitations my body put on me. But I never lost control of my mind. Tired as I was, uncomfortable as I was, I never had periods where I lost time or couldn’t identify with my own thinking. I can’t imagine losing control of both, being trapped in a shell that I don’t recognize mentally or physically.
Despite being a well-described account of what it’s like to suffer this diagnosis, I don’t think it’s possible for the reader to ever truly understand what it’s like to go through this. Maybe if you’ve ever been so drunk you said something you normally wouldn’t, or you blacked out, you could sort of picture what it’s like to lose time. Maybe if you’ve taken drugs you can imagine what it’s like to be paranoid or to see things that aren’t really there. And maybe if you’ve had an illness or injury (or in mild cases been pregnant) you can grasp what it’s like to not be in control of yourself physically. But many of these examples don’t involve losing control of your body and your mind simultaneously, so in that regard I’m not sure anyone can truly grasp what this illness does. The writer herself doesn’t remember part of the ordeal and recounts events based on surveillance footage, and unless you’ve experienced this before I don’t think you can fathom the horror of what it’s like to watch yourself deteriorate when you have no memory of it. Equally terrifying – moving on afterward knowing that you and everyone else can see that you aren’t the same as before, and wondering if that’s permanent. Wondering if every person you encounter is now looking at you with a little pity, or is afraid to look at you at all, because they can’t help comparing the current image to the former one. And while I usually love to get immersed in the characters I read about, this time I was glad that I couldn’t truly identify.
Brain on Fire revealed just how easy it is to dismiss the cues our bodies give us when something is really wrong. And the truly terrifying part is that even after reading about it I’d probably still be tempted to dismiss most of them. Headache brought on by bright lights – my eyes are just tired. Forgetfulness – that’s nothing new. I’m regularly reminded by my husband that he did in fact tell me about his schedule, why he’s fixing the thermostat a certain way, etc., and since I was multitasking at the time I just don’t remember it. So I’d dismiss symptoms like these without question. Most of us would, because they usually aren’t indicative of anything.
But sometimes they are, so how do you recognize what is a temporary ailment and what is potentially the sign of something serious? I can’t answer that. I don’t know if anyone can until it’s too late, because the symptoms have progressed enough to validate they are real. Fortunately modern medicine can treat many things, caught early. I guess we just need to be diligent about paying attention to things our bodies try to tell us, so we learn to spot the difference between ailments and symptoms.
Michele Lenard 