When My World Flipped Upside down, Pt.4

Part four.

The Shell and the Superpower

Two weeks after the hospital released me into the wild, I finally sat across from a real neurologist. She was sharp, clinical, and to the point—the kind of doctor who intimidates me into silence. Luckily, Simon was there to be my voice.

We went through the rhythm we’d practiced: what it feels like for me, and what it looks like from Simon’s point of view. She decided Keppra wasn’t the right fit, but instead of taking me off it, she layered another anti-seizure med on top. She did, at least, trade my "antihistamine anxiety" meds for the real thing.

"Come back in three months," she said. "We’ll evaluate the medications then."

The Quiet in the Woods

September bled into October. A specific memory of peace sticks out from that time. We went on our annual family camping trip, and as I laid my head down in the tent, I realized something miraculous: my brain was quiet.

For the first time in my life, the "million-thoughts-a-minute" engine had stalled. The constant internal chatter was gone. I slept soundly, tucked into the woods, thinking, Finally. Something is going right. But that silence was a double-edged sword, and the price of that "peace" was becoming clear.

The Minefield of Triggers

By the time our follow-up rolled around in mid-December, the seizures had subsided slightly, but my life had shrunk to the size of a postage stamp. We were starting to pinpoint the triggers, and honestly? They were everywhere.

Lack of sleep was a major one—which was great, considering sleep has always been a battle for me. Then there were the lights. Flashing lights were an instant "nope," but the worst was the sun. Driving anywhere became a nightmare as the sunlight strobed through the bare winter trees, flashing like a rhythmic warning. It made traveling anywhere feel like a gamble.

Then there was the stress. With three kids going at it on a regular basis and my inability to drive myself anywhere for an escape, "stress" was just my permanent state of being.

Losing My Superpower

But the most heartbreaking part was the loss of my mind. My entire adult life, my photographic memory had been my superpower. I could recall anything. Now, on this cocktail of meds, I was a stranger to myself.

I’d stand in the kitchen holding a pill bottle, staring at it with a blank face, unable to remember if I was holding it because I was about to take my pills or because I had just taken them.

The lowest point came on an ordinary evening. I was standing at the stove with a pot of boiling water in front of me, holding a box of macaroni. I looked at the box, then the water, and I genuinely, truly could not remember what I was supposed to do next. The steps of a five-minute meal had evaporated from my brain.

I stood there, frozen, until Simon had to take over. I just sat down and cried.

The Medical Dead End

We went into our follow-up eagerly, wanting to find the why. But the doctor was in the room for barely ten minutes. When Simon challenged her, wanting to know what we were doing to find the root cause, she brushed him off. She said the cause wasn't important because the treatment was "working."

We left in a daze—Simon in silent anger, and me in a cloud of confusion. Six more months of being a passenger? My therapist even suggested I stop cooking dinner altogether to avoid the "overwhelming trigger." I was lonely and useless. I was a body shell where a soul should be, but there was nothing left inside.

The New Year’s Spark

Desperation has a funny way of forcing you out of your shell. My introverted self was so starved for human connection that the idea for a podcast was born on New Year’s Eve. I needed to find my voice again.

Life started to flicker back to color. For my 30th birthday, we went to Mexico with my best friend of twelve years. Standing on that beach, I felt a tiny, stubborn spark of hope. I didn't have the answers yet, and I was still a "zombie" on meds, but I was starting to realize that if the doctors weren't going to look for the "why," I needed to at least get reacquainted with myself.

I was a body without a soul, but the spark was returning.

Explained by Neurologist, Dr. Carolyn Taylor

Author - Samantha Mandell, RTT Practitioner