Brain on Fire, Susannah Cahalan
I didn’t expect to connect so personally with this. On the surface, there’s not much to compare between me and Susannah Cahalan. There are a few correspondences: the start of her illness was marked with an intense fear, almost a belief, that she’d been infested by bedbugs; so was mine. On the other hand, I “just” had GAD: Susannah Cahalan had an autoimmune disorder in which her own immune system was attacking her brain. (She does mention some speculation that obsessive-compulsive behaviours and other psychiatric issues may actually be attributable to inflammation of the brain similar to what she experienced. The more I think about that, the more I want to become a doctor, maybe work in psychiatry, or maybe neurology, and push that research further. And research into epigenetic aspects of mental illness. Or at least get to the point where I can understand all of the existing research.)
(And sotto voce, I can almost hear my mother’s comment: “Well, you should be a doctor.”)
Anyway, despite the vast differences in the actual content of our diseases, I shared some of Cahalan’s feelings about it. I felt like I lost part of myself, the steady logical voice that refutes the brain’s wilder ideas about what’s going on, and though Susannah lost a lot more than that, I know something about the struggle to regain your own mind. I think people often believe that my anxiety was just an emotion like all my others. It wasn’t, though. It felt stronger than anything else, stronger than me. It felt like something from outside of me, subjugating the real me. It was like having another person physically holding me back, sometimes. The sheer courage it took me to step outside the front door, sometimes — it felt impossible, alien.
So I shared with Cahalan some of the feelings of getting my old self back. Self-hate at the things that still aren’t going right. Worry about what people will think of you. Celebration of tiny steps at the same time as feeling they’re not enough, you’re not there yet. Wonder at how far you’ve come. Worry that you’ll relapse. I very directly share that fear Cahalan feels when she thinks she sees a bug or something. My brain conjured ’em where there weren’t any, too.
I was expecting to find this interesting because of the medical content. That is interesting, though because it’s from Cahalan’s point of view, it’s more of a layman’s understanding of the disease, a memoir of dealing with it. I found it unexpectedly much more compelling than that, because Susannah Cahalan lost and regained her identity, and therefore has a lot to say about the whole idea of identity, and maybe some things to teach neuroscience, maybe even psychiatry.
The financial cost of treating a patient with Cahalan’s disease is staggering, eye-watering, jaw-dropping — there aren’t enough adjectives. But to bring someone back from that state, that’s beyond price.