Disconnections

In the Aftermath of Brain Injury

Posted Sep 06, 2017

Complete and utter mayhem. A blurry, churning wall surrounds me, trapping me. Cacophony beats down on me, roaring, harsh. Smears of color flash by—searing yellows, pulsing reds, blinding greens. I flinch at the slightest touch.

Thoughts dart about, out of reach. I snatch at them, hoping to nab something, a glimmer of reason, anything. The harder I try, the more elusive they become. Disorientation and confusion quickly evolve into fear and panic—what is happening to me? Am I plunging into insanity?

It was sensory overload, not insanity, but I couldn't make the connection.

It's been more than a decade since my brain injury and I still have trouble connecting cause and effect, theory and practice.

Learning to understand sensory overload was a long process; at first, because I had no label for it, nothing to put it in perspective, no experience to draw from. I didn’t think to ask a doctor about it. It didn’t occur to me that there was a question to be asked, that there was a label to be had, that it was a symptom of something, of anything, of brain injury.

I first learned the terms for this chaotic experience—sensory overload and its emotional companion, flooding—in a book I read a few weeks into my recovery from brain injury. A few weeks after that, my neuropsychologist provided an understandable explanation for what was happening: my brain was no longer able to keep up with high volumes of data. Too much sensory data swamped my neurological circuits and my ability to think and process information basically shut down, allowing my brain to "reboot."

His explanation made sense, but I couldn’t apply the theory in real life. Even though I was aware that too much sensory input was the culprit, I kept missing the link between cause and outcome. The chaos in my mind would escalate until I was incapable of escaping the situation that caused the problem in the first place.

Finally, several months into my recovery, I experienced an epiphany. I was in a crowded and noisy restaurant, and the service was slow. By the time we arrived home, I was a complete mess—emotionally overwrought, unable to think or communicate clearly. As I emerged from the mental chaos, I heard myself chanting, "What to do, what to do" over and over. And finally, the connection clicked into place: this meltdown didn’t come out of nowhere. It was caused by the assault on my senses at the restaurant.

Smadar Keren, used with permission
Source: Smadar Keren, used with permission

With that connection came the realization that it was possible to prevent sensory overload: I should keep away from sporting events, parties, and other crowded and noisy situations. But what about triggers I couldn’t avoid, such as grocery shopping, airport terminals, and job related events?

In addition, I discovered that many overload episodes were caused by an accumulation of sensory input over time, sometimes hours or days. The ensuing overload seemed to slam into me suddenly, without warning, scrambling my brain within split seconds. And I was unable to think my way out of the situation.

Before I made the sensory input-overload connection, I feared I was inept, or malingering, or seeking attention—that somehow, these events meant that I wasn’t trying hard enough. The frustration, guilt, and anguish set off emotional overload—called flooding—that compounded my internal traffic jams and delayed my ability to regain control over my mind and body.

Would more effective communication with medical professionals have helped me learn to cope better much earlier? As patients not fluent in medical language, we often have trouble articulating our concerns. Frequently, we don’t even know what questions to ask.

Learning that sensory overload and flooding were bona fide symptoms of brain damage, and not a matter of inadequacy on my part, brought immense relief. That alone helped alleviate some of the difficulty.

It took me almost a year to learn to connect early symptoms and the full-blown meltdowns, a year to understand that lightheadedness, precarious balance, or tears pricking my eyes were signals not to be ignored. Once any appeared, I couldn’t hesitate. I had to act within a couple of minutes. Any later and I wouldn’t be able to make my way to a quiet space where I could recuperate and regroup. More years to learn better pacing, better management, and coping strategies for those times and situations when sensory input can pile up, unnoticed, until it reaches critical mass and a meltdown.

All those years of anguish and fear—could they have been prevented? Or at least alleviated, with better, laymen-friendly explanations that included examples? With more frequent reminders? With improved, ongoing communication between health-care provider and patient?

I know there are no guarantees, but disconnection difficulties are so common in brain injury survivors that finding better ways to effectively connect—cause and effect, theory and practice, patient and care provider—should be a top priority.