Deb Brandon: Living in Radiant Color

Yes or No?

Something’s wrong, as if my brain doesn’t fit inside my skull. No, that’s not quite it. I feel heavy, my legs, my arms, my head—
It clicks—I need to press the call button. Now. As I press it, I start second-guessing myself—maybe it’s nothing, maybe I’m just tired. I really slept poorly last night—
A nurse hustles into the room. “Tell me what’s going on.”
I describe my symptoms as best I can, but some of the words have gone missing. I can’t stop fidgeting. My jaw feels tight. My knee starts jerking, then my head. My muscles are stiff, rigid. Everything is jerking, legs, arms, head. My back arches and releases, arches, arches.
I feel like a puppeteer is controlling my body. Stop— my head jerks to the right, center, then right again, and again. My back arches again, throwing my body side to side. My arms and legs are all over the place. I slam into the padding on the right, then the left. My head jerks and jerks, left, right, left right. Stop—
My left knee is bent. One foot pressing hard on the other. What the—
Jerking, jerking. Sideways, up and down, in all directions. My muscles, so tense.
A lifetime later, the jerking decreases in frequency and amplitude. My muscles are beginning to relax— No—my body goes wild again, even worse than before.
The next series doesn’t last as long, but recovery is longer. The next feels halfhearted, as if the puppeteer is beginning to tire.
Finally, it’s over, more or less—I only experience minor intermittent flareups. I take a deep breath. It’s okay, I made it.

I feel as if adrenaline is coursing through my drained body, not allowing me much needed rest, as if the puppeteer isn’t quite ready to relinquish control.
Once all the aftershocks have faded and I have time to allow myself to feel and think, thoughts and emotions chase each other around. I am relieved it’s over, that I can go home soon, that there’s a definitive answer. Finally, there’s proof positive that my seizures are epileptogenic.
But over the next few hours I sense a change in the atmosphere around me—somehow, it doesn’t feel quite as amiable. One of the EEG technicians is less solicitous. Another is actually abrupt with me. And a third seems more distant, where before she was a lot of fun, joking around, laughing.
Do they feel like I am wasting their time? Could it be that there was no change in my brain activity during that seizure? How could they have been NES (none-epileptic seizures)? They were so real, so violent. There’s no way stress could induce something like that. Or could it? Stress can trigger a heart attack, why not seizures? But there are underlying biological issues behind heart attacks. Why not behind seizures?
The last time a neurologist diagnosed me with NES, she was accusatory. When she told me that cavernous angiomas were harmless, I asked her about my loss of balance. She asked for a demonstration, and when I showed her, she claimed I was faking it. I was devastated. To this day, whenever I experience symptoms that may be related to the bloody brain, I doubt myself—am I an attention seeker? Am I a malingerer? Am I not trying hard enough?
In reaction to her accusations, for years I tried too hard, struggling to push myself through crippling fatigue, attempting to function through excruciating headaches. I often drew on my almost depleted resources to focus—perhaps that would help me overcome my precarious balance, my dizziness and vertigo, my difficulties with my memory and attention span. But the harder I tried, the worse I felt. And all consuming headaches and debilitating fatigue, confined me to bed in a darkened room, preventing me from functioning even at a minimal level for a couple of days. The headaches didn’t fully abate for months at a time.
And now? How do I feel? Devastated as I felt back then? I search my inner self. No, not really. I sense a twinge of… what? Frustration? Anger? Disappointment? Fear?
Whatever it is, it’s only a twinge.
At this point, I just want an answer.
Is it? Or isn’t it?