Hitting a New Low: My First Seizure

Recently, I had a very scary experience. I am still grappling with the aftermath of this event and trying to fully understand its implications. I considered whether now was the right time to share this story with you and ultimately concluded that, in the interest of true transparency and advocacy, it was. Still, it’s a very personal story, and writing about it was a significant challenge.

What happened was this: I had a seizure. 

My blood sugar dropped too low one morning, and I didn’t wake up; instead, I convulsed violently, bit my own cheeks, and foamed at the mouth.

I don’t remember doing any of this, but the fact that it happened is undeniable. For one thing, I spent the next several days hobbling around my apartment feeling far too aware of every muscle in my body. My legs ached, my jaw smarted, and I discovered a newly chipped tooth.

Also, there was a witness. While I may not remember what happened, my boyfriend certainly won’t be forgetting anytime soon.

***

During my (first ever) ambulance ride to the hospital, I took deep breaths through my mask, clutched a plastic barf bag, and tried to recall everything I had ever learned about seizures. I knew that I’d had a tonic-clonic seizure. I remembered that tonic-clonic seizures are almost always followed by a postictal phase in which the person experiences confusion, fatigue, and other changes in thinking and mood.

I remember actually thinking to myself: “I am postictal. This is what being postictal feels like.” I clung to this shred of knowledge; for some reason, it was a comfort.

Later, I would look back on this strange fixation with bitterness. After all, what good had this knowledge done me? It hadn’t stopped me from having a seizure during a family cottage weekend with my in-laws. It hadn’t saved my boyfriend, Fraser, from having to save me from my brain’s electrical storm.

And it hadn’t helped me answer the simple questions he’d asked me when I regained consciousness, when I was truly postictal and still severely hypoglycemic: “Do you know who you are? Do you know who I am?”

I had shaken my head no, utterly bewildered. I felt like I had been given a test that I should pass with flying colours, but somehow, I didn’t know any of the answers. What’s one plus one, Taylor? Come on, you know this. One plus one.

Of course, I didn’t actually think any of this at the time. As if I could possibly conjure succinct analogies—I didn’t even know who I was, or if I was awake, or if I was real. I was conscious, but not; the lights were on, but I had not yet arrived home. This confusion was completely overwhelming, particularly when combined with physical symptoms like high blood pressure and an elevated heart rate. I began to hyperventilate and panic.

Fraser spoke to me like a child, his voice trembling; just moments before, he had been force-feeding me juice to stop my convulsions.

“Who are you?” He asked again, gently.

“Taylor,” I whispered. I was still so unsure. One plus one equals . . . two?

“That’s right,” he said. “You’re Taylor. And who am I?”

Why did it feel like a trick question? I hesitated for far too long.

One plus one equals two. One plus one equals two.

“Fraser,” I said. We are Taylor and Fraser. Taylor and Fraser. Taylor and Fraser.

With that, the veil covering my mind lifted, and I was filled with horror as I realized what had happened. I saw not only who Fraser was, but also what he must be feeling in that moment.

“I’m sorry,” I said, hugging him as tightly as I could. “I’m okay. I’m sorry.” I’m Taylor.

By the time I boarded the ambulance, my thinking was much clearer. I knew who and where I was. I knew what tonic-clonic meant. I even remembered what had caused the seizure: Approximately six hours earlier, at 5 a.m., I had taken a corrective dose of insulin. Clearly, I took too much.

Strangely, though, it took me nearly a week to actually remember my post-seizure conversation with Fraser. I recalled not knowing who I was, but I actually misremembered who had asked me this question—I thought it was one of the paramedics, not my boyfriend. It wasn’t until I began writing this post that I recalled what had actually happened. (Fraser has since corroborated this version of events.)

I don’t think it takes a shrink to understand why my brain was so quick to put that one on the back burner.

***

My stay in the ER was short. It was fairly standard in that it involved both inedible hospital food and an insensitive doctor who I didn’t have the energy to deal with. I nodded at all the right parts during his brief lecture on the dangers of drinking alcohol (as I had done the night before) and waited for him to tell me I could leave.

It’s not that he was saying anything untrue: I did drink the night before, and heavy drinking is a poor choice for people with type 1 diabetes. It inhibits the body’s ability to release glycogen in response to low blood sugar, and it alters judgement.

It’s just that the doctor didn’t introduce himself, or ask how I was feeling, or otherwise acknowledge that I was recovering from a major neurological event. He didn’t listen when I said I knew what I had done wrong and that it had been entirely my mistake.

Because it’s always my mistake, isn’t it? If not mine, then whose? Certainly not this guy’s—he didn’t even know my name.

This sense of culpability is just one of many uncomfortable truths I’ve had to confront post-seizure. Reflecting on the experience has caused me to bounce back and forth between despair and gratefulness—the former inspired by my body’s betrayal, the latter by the love and support that has been showered on me. I keep finding myself seeking a lesson to be learned from this experience. Specifically, I have been searching for some sort of positive (or at least productive) perspective to settle on.

But the fact is that, no matter how much I may want to, I can’t possibly simplify this experience or neatly file it away in my mind. A seizure is a traumatic, perspective-altering event. As such, it has a way of shedding some serious light on all of life’s contradictions.

Life is wonderful and life is hard. I am strong and I am tired. I tried and I failed.

A situation can feel embarrassing and shameful even though it’s not my fault. Doctors can be insensitive even though they should be caring. I should try a CGM even though it won’t solve everything.

My boyfriend can be my closest ally and strongest protector but also be incapable of always keeping me safe. My family and friends can believe in me but also worry about me. I can want people to know what happened to me but also not really want to tell them about it.

And finally, perhaps the hardest truths of all right now: I will do everything in my power to never have another goddamn seizure, but one day I might have one anyway.