The Science of Listening

I stopped believing in souls strapped to a gurney in a recovery room, alone, coming back to myself after a seizure. It's easy to not be you anymore in those moments of suspension. You is a fragmented idea, a shivering collection of colored shards that eventually you must arrange into a frame again. Until the next time, when the colors rain down again in bright lights against your vision.

I vividly recall the first time I read neuropsychologist Paul Brok's book where he wrote, "When we see the brain we realize that we are, at one level, no more than meat; and, on another, no more than fiction."

Yes. I thought, that's it. We're story telling meat. There is a bit of freedom in that. Every time the frame falls, if there is a bit of me that I didn't quite get right I can discard it as I try to get closer to the ideal I present. I can carpenter a narrative I can get along with.

But when I was first waking from that seizure I had not read Broks, nor Oliver Sacks, or any of the other numerous books and papers on neuroscience that have since convinced me of my deep humanity and-for lack of a better word-sanity.

I was confused and small and scared and a lot of other ands that come with being young and sick and misunderstood.

A middle aged nurse towered over the bed like the worst sort of childhood monster. The kind that presents in a caretaker role, but quickly shows herself to be another thing entirely.

She pointed her finger at me and announced I was a waste of time.

I was shocked. What did she mean? I felt terrible.

But apparently since nothing had shown up on her EEG they were deciding I'd made the whole episode up. I was being discharged with no further research.

In her defense, people dismissed me for years after that. I made it easy, I suppose. I was a poor punk kid with shredded clothes and at times a shaved head, other times bright green Final Fantasy inspired tresses. I generally didn't mind not being taken seriously. Generally.

The words added up. There was a period of time I went to the ER afraid I was having a heart attack. It turned out to be costochondritis, but there were plenty of medical staff that made sure I knew I was rather silly for taking it seriously. Still others didn't even consider the inflammation in my ribcage- or later, the slipped ribs, and declared I was having anxiety attacks.

And after awhile, maybe I was.

I took Xanax and anti-depressants that did not stop my heart from racing, or my chest from aching, or my depression from depressing.

No matter what symptom I presented with, from GI tract bleeding and anemia to rashes that steroids can't destroy, the conversation would turn to anxiety- and somehow, anxiety was minimized.

If, as a medical professional, you truly believe someone is presenting with pseudoseizures because of anxiety, I strongly believe you should be that much kinder to them. Instead, time and again, my experience showed the more they believed the cause of my distress was psychiatric, the more likely they were to be short with me at best or outright mean at worst.

Our meat is telling our stories- the hitched breath as one tries to explain the radical feeling of CSF (Cerebrospinal fluid) dripping inside the skull when they don't know what CSF fluid is doesn't make someone is a liar, even if they are wearing a ratty sweater and Doc Marten boots. Rare disease is often misdiagnosed many times.

My heart beat as fast as a rabbit's as I'd change out of crinkly paper gowns and see myself out.

I tried to be practical. When enough test results come back normal and you've had enough stern people tell you "it's all in your head" it begins to sound reasonable (although everything is in one's head- your YOU- the brain- is in your head, but that's another argument).