It’s Not Good—But It’s a Good Story. I Think.

 If you were to ask me what the most traumatic memories from the last two years are, they would undoubtedly include memories of seizures and rehab appointments. The seizures were so wildly unpredictable that I constantly felt as if I were on the edge of a cliff. And not just on the edge of a cliff, but specifically on a volcanic cliff where I might not only fall off, but the volcano might simultaneously erupt, blowing everything to bits with hot lava and blinding ash. Even the last few routine appointments with my seizure doctor were invariably filled with tears as I talked about how emotional those memories were for me. Every time I had a seizure, the clock would reset on when I could drive again, pushing independence farther and farther away.

In a similarly emotional vein, rehab appointments were where I was consistently confronted grief over physical and cognitive loss, realizing that my body and brain were no longer what they once had been. I remember the occupational therapist handing me a one-pound dumbbell—one pound—to see if I could hold it in my left hand and rotate it at the wrist. I couldn’t do it. The speech therapist handed me a worksheet where I was supposed to draw hands on a clock according to the time listed. I got them wrong. I would leave sessions exhausted, ready to go home and sleep.

Rehab has long been in the rearview mirror, and I have now moved over to a gym setting. I’m still confronted by loss there, but not with the emotional force that rehab carried. I suspect the left side of my body will always be weak and uncoordinated, particularly my hand and arm. I’m still coming to terms with that in some ways. I can now draw hands on a clock, although mental math is a bit of a challenge. Perhaps the government did me a favor by eliminating the penny, and businesses are now rounding to the closest five cents. This means less brain drain for me when trying to make change at restaurants and such.

As for the seizures, as painful as the memories are, I at least haven’t experienced any since May 2024, so not quite two years. Time and space have largely eased the fears and anticipation I used to have about the prospect of them recurring. In a mutual decision with my seizure doctor in early February, we agreed that it would be okay to stop taking one of the two seizure medications I was on. I had no reason to think the decision would not go well, and neither did my doctor. I would cut the dosage in half for one month and then stop it altogether. My general line of thinking when it comes to medications and supplements is that I don’t want to be on them unless they are necessary.

I took my last dose of that medication this past Sunday night. It’s an extended-release version, and I only take it once a day, so technically my body won’t notice that it’s without that medication until sometime after Monday night.

After nearly two years, I didn’t even make it a full forty-eight hours (counting from Monday night) without having a seizure.
 
And boy, was it a whopper. And boy, did I learn in the span of a few minutes that that medication was 100% necessary.

I had a broken lamp, a ding in my wall, a knot on my head, and a painful shoulder telling me so.

To set the stage for how all these things quite literally collided: After I didn’t take the meds on Monday night, I didn’t feel all that great on Tuesday, but I hadn’t felt all that great since late last year, so I didn’t think much of it. I learned in my routine physical in December that I have a new thyroid issue, and I suspect I am sliding into perimenopause. (I tell ya, my mid-life had seemingly been one crash landing after another.) I have been experiencing terrible insomnia. I have felt lethargic for large portions of the day. I haven’t had a great appetite. I have developed tinnitus (which is maddening, especially for someone who spends a large portion of her life in silence). I chalked it all up to issues I had been collecting with the thyroid and maybe hormones. The notion of it having anything to do with the medication withdrawal did not occur to me in the slightest. Tuesday night, I had the probably the worst night of sleep since being in the neuro critical care unit in the hospital back in April of 2024. Most of Wednesday morning I felt mildly queasy.

At 12:30 p.m. on Wednesday, I was working like normal, and I joined our weekly video team meeting with my two coworkers, Jill and Simon. The three of us make up our conference planning team, so I speak to them pretty much every day, even outside of work. I have known Jill for almost twenty years, and I have known Simon since I started at the organization thirteen years ago. But these two have run the gauntlet with me these last two years, and I with them. We have each been through the tumbler in our own unique ways. They saw me across the screen in the early days when I was recovering from the craniotomy, and when I would be in meetings, slouched in a chair with my eyes closed, just listening, because I visually couldn’t handle looking at my computer screen for very long. They moved meeting times around when I was so tired from medication that I couldn’t function. They shouldered extra tasks when I just could not get things done in a timely manner.

In short, they were—and still are—unbelievably kind, funny, compassionate, patient, accommodating, and understanding. I couldn’t ask for better coworkers.

And on Wednesday, they were forced to run the gauntlet again. They unknowingly helped redeem painful memories of seizures, turning this seizure into one that later filled me with laughter.

While we met, we ran through our agenda, aiming to discuss some details before we were to be joined by a few members of our data team. At one point, I had something I wanted to comment on while Jill was talking, so I simply raised a single pointer finger to signal that I wanted to interject. She paused, I commented, and we carried on.

One vital thing to note here: I have a standing desk. (A beautiful one, I might add. It had been newly finished, courtesy of my friend, Chet, who installed an ultra-smooth piece of walnut plywood for the desk itself and then installed stone tiles for the backdrop. I love it, and I thought the final piece turned out so well. But that’s not really the vital thing to note here. The point is that I was standing during this meeting.)
 
As we carried on with our agenda, I was still standing when suddenly I felt that dreaded sensation in my left leg, the signal that I knew a seizure was coming—something I hadn’t felt in nearly two years but remembered all too well. Crazy enough, I felt no sense of panic; only the need for politeness motivated me to hold up my left pointer finger again to indicate that I had something to say. In those split seconds, the seizure moved up to my arm, and I could tell it was all about to come undone. Jill noticed my finger and paused, “Yes, Courtney?” She thought I just needed to comment on something. My leg then totally locked up, and I started sliding to the right across my ultra-smooth, beautiful walnut desk. I uttered very simply, with no emotion, “Guys, I’m having a seizure,” and then down I went.

My memory is a bit scattered, but the initial slide into oblivion doesn’t exist in my memory bank. I remember cracking my head on the sturdy Dale Tiffany floor lamp post next to my desk, ricocheting off it once and then hitting it again at the base as I fully hit the ground. As I landed face up, I looked up at the stained-glass globe, swinging violently as it bounced off the wall. I reflexively lifted my right arm into the air toward the lamp to shield myself, as I thought the glass was about to shatter and come raining down on me. My left side was convulsing the whole time, and I had no control over it.

As I finally reached the end of the fall to the floor, my brain gained clarity, and I realized what had happened. I could talk to Jill and Simon at this point, sans raised finger, as they were still on the call. Jill thankfully had my mom’s phone number, so she stepped off to call my mom while I continued talking to Simon. Jill got a hold of my mom, and she asked her whether to call 911. My mom said yes, of course. And I yelled no from the floor, still seizing. “Don’t call 911! It’s not necessary.” Poor Jill was caught in the middle of one person telling her to call 911 while the other—who had taken a less-than-graceful fall and was lying on the floor—was telling her not to.

I honestly didn’t know what all was said, so you’ll have to ask them if you know Jill or Simon, but I remember we were joking a lot, the conversation occasionally fractured by the flow of tears and sobs on my end—not from pain, but from the fact that I was back in a place medically that I had hoped I would never return to. I remember being a sweaty mess. I tend to lean toward the cold side, so that day, I had on a long-sleeve shirt, a sweatshirt, and my fleece bathrobe. So, here I was, laying spread-eagle on the floor, my left side no longer spasming, trying to get out of at least one layer of clothing, but couldn’t because the left side of my body wasn’t working. I figured it out somehow, but I was sweating even more. I put my hand to the back of my head where I banged it, already a goose egg forming, because it felt like it was bloody, but nope (thankfully), just sweaty.

I continued talking to Jill and Simon from the floor, not even trying to get up because I knew my body couldn’t hack it. I generally lose all sensation, coordination, and strength when I have a seizure, so getting up with no one else around was out of the question. But given that I was far enough away from my computer, I was trying to project enough that they could still hear me. I wasn’t yelling, but it felt like it to me.

So, to recap: I politely and calmly interrupted my coworkers to tell them I was having a seizure, tipped over, crashed into the lamp, which crashed into the wall, and then eventually landed on the floor, where I wound up sweating, crying, laughing, and insisting Jill not call 911.

My parents eventually arrived, but my dad was unfamiliar with how to use a Mac and couldn’t log me out of the meeting, so while I was still on the floor, I attempted to prop myself up and I snaked my hand up to the edge of the desk to reach the external mouse to close things out—like some sort of child trying to slide their hand into the cookie jar, hoping to go unnoticed. I was mildly yelling at Jill and Simon, saying goodbye before we all exited.

That’s when the full-on meltdown began. My parents had seen most of my seizures. They were the ones who had been up close and personal with all the emotions and chaos that came with them. My dad helped me off the floor and guided me to my recliner in my bedroom across the hallway. I was now a snot-nosed mess, although at least less of a sweaty one.
 
I immediately took a full dose of the meds I had stopped. Lesson learned. Don’t do that again.

The ensuing twenty-four hours were filled with regrouping and piecing together memories of the fall. It felt like I was putting together a crime scene, connecting one shell casing to the shoe tread to the hole in the wall, wondering how one thing had led to the other.

My parents took me to their house for the evening, with plans to come back to my house and have my mom stay with me for the night as a precaution. As I lay on the couch at my parents’, I reached back to rub my left shoulder and thought, “Yowza, that hurts.” It felt so bruised and sore, but I had no memory of hitting my left shoulder. I peeled off my clothing, only to discover a layer or two of skin had been peeled off in the fall—even under three layers of clothes. So, then I realized that was where my memory must have blacked out, the moment when I hit the desk. All I consciously remember hitting was the lamp, not the desk.

After my mom and I stayed back at my house Wednesday night, my mom noticed the next morning that the lamp was broken and there was a ding in the wall—neither detail I had noticed on the day of the fall.

A diagram of the crime scene

So, to recap the accumulated ailments and missing initial facts, by Thursday morning, I now had a highly bruised shoulder, a goose egg on the back of my head, a broken lamp (made of hearty metal and not easily broken, I might add!), and a mild dent in my wall that I may just leave for posterity’s sake.

Simon and Jill faithfully checked in. God bless my poor friends; I couldn’t imagine what it must have been like to watch your coworker vanish from sight through a computer screen and then hear all this banging around—not knowing if she was alive, dead, or somewhere in between. Simon told me later that the sound of it all made his stomach churn. But he did place a request that maybe I could try to take my computer with me the next time I fell, just so they could be with me on the floor. I told him I’d practice. He also wouldn’t be opposed if we all wore helmets to future team meetings. Ah, yes, Simon’s famous snark and wit, which I love and desperately needed.

But you know what the craziest thing about all of this was? Thursday night I was reflecting on the physical sequence of the fall itself, the detective in me still piecing things together. I fell to my right, so in theory, my right side should have been damaged far more than my left. So, how was it that my left shoulder and the left backside of my head bore the brunt? The injuries didn’t match the direction of the fall.

There’s no way I could have made a split-second decision to turn myself around in that moment. The motto of a seizure is the motto of Silicon Valley: Move fast and break things. I firmly believe it was only through an act of God that in the nanoseconds it took for me to black out, I was whipped around so fast that I was facing away from my desk—thus explaining how my left shoulder hit the corner of my desk and how the left side of my head hit the lamp. My body had to have moved so fast that I could have qualified for Olympic figure skating. If I had still been facing the desk, my jaw and skull would have made first contact with it. And while I’ll never know, I can only imagine that the implications of that scenario would have been infinitely more damaging.
 
A friend of mine shared once that she and another friend adopted a motto when they travel together: It’s either going to be good, or it’s going to be a good story.
 
It’s not good that I had a seizure after nearly two years, but it sure does make for a good story. I think.

All kidding aside, I really am okay. I was slated to have my next routine MRI at the end of this month anyway, but as a precaution, I requested to have it moved up if possible. My oncologist’s office was able to move the appointment up and we’ll have imaging to see if anything did go awry internally in the fall.