Labeling

How did I find out about sensory overload? Did I read about it? Did my neuropsychologist mention it? When did I learn of it? I certainly didn’t know about it when I was at the spinning retreat, SOAR, more than a month post-surgery. In putting the pieces of the puzzle together, in rereading past journal entries, I think I finally started understanding overload more than three months post-surgery.

During that period of ignorance, I became terrified whenever my circuits jammed up, the terror further aggravating the overload.

Once I discovered its label—“sensory overload”—I started learning how to prevent it by minimizing my exposure to overwhelming levels of sensory input. I learnt to set up safety nets for the unavoidable situations when I expected trouble. I brought earplugs along with me or asked friends to keep an eye on me and lead me away if necessary.

As I struggled to navigate my way through this new nightmarish world of recovery from brain injury, labels acted as compasses, orienting me in my struggle to survive, giving me direction. They helped me recover my sense of self, understand and begin accept what had happened and who I had become.

Approximately a month after the onset of the bloody brain, I mentioned to a friend of mine that I felt really sad much of the time.

“It’s only natural. After all, you are grieving for your losses.”

Her use of the word “grief” brought me immense relief. The generic term “sadness” had made me feel inadequate. I equated sadness with wallowing. I saw my sadness as sign of weakness. I was being needy, seeking pity.

But grief was natural, it made sense, it was a fact, understandable, acceptable. From then on I let each bout of grief run its course without trying to hide it or to make excuses for it. I had suffered losses, I was grieving, and that was all right.

Self-doubt often plagues brain injury survivors. We lose confidence in ourselves, in our mental capacity. If anyone gives the slightest indication that we may be wrong, that we may not have performed a task appropriately or in a timely fashion, we start questioning ourselves. Am I fit to perform my duties? Did I remember incorrectly or did he? Am I not trying hard enough? Is the situation as bad as I believe it is? Am I over-dramatizing? Is it all in my head?

More than six months after the surgeries I came across the book “Over my Head” by Claudia Osborne. The author suffered a brain injury as a result of an accident. From her book I discovered that when I was caught in an emotional feedback loop, when I panicked and suffered horrific meltdowns, I was “flooding,” in the wake of sensory overload. I learnt about “disinhibition,” which explained the increase in my profanity, and the fact that I was now quicker to anger.

Such labels brought the validation I needed to badly—my difficulties were real, I wasn’t being melodramatic. And once I could address the deficits by name, I could learn more about them, their causes, and how to manage them effectively through coping mechanisms and compensation techniques.