My first seizure happened at work and it sucked

A personal account of having a seizure for the first time.

My first seizure happened in the afternoon on a work day. I was sitting at my desk and began to feel what I now know to be an aura. I had been feeling them for months, but didn’t know what they were and none of them had been as bad as this one.

You start to get nervous. You get a hot flash and start to break out into a sweat. Sometimes there are hallucinations. Images appear like in a dream; vivid, not making any sense. There’s always a deja-vu experience.

My speech center turns into a pit that starts to fill with sand. My words are a dictionary waiting at the bottom of the pit. My brain frantically tries to flip through the dictionary for the words I need, but the sand buries it before I can say anything. The most I am ever able to get out is “I feel weird” and “I don’t know.” It’s like those two phrases are kept in the library card slot on the inside cover of the dictionary so that my brain can quickly throw them out of my mouth before I shut down.

During the aura I experienced right before my first seizure, I remember sitting at my desk thinking that something was seriously wrong and I needed to tell my coworkers. I tried to speak and reach out to someone, but I blacked out before I could warn anyone. I woke up in an ambulance.

Upon coming to, I was not myself. My brain was rebooting after having been fried (a wonderful analogy my neurologist later made). The first system to come back online is the body’s autonomic system; a system that is responsible for the instinctual responses we have to stressful situations. My first instinct was to flee. When my coworkers tried to calm and contain me, I switched to fight.

I was pushing people out of the way so I could escape. I was screaming and apparently, as I learned later, throwing bloody napkins at someone who was trying to wipe the blood off of my face.

There was so much adrenaline coursing through my body that I was literally in beast mode. One of my coworkers finally got his arms around me and sat down, trying to hold me still. I stood up with his arms still around me and lifted him out of the chair.

As I was carried out of the building, everyone saw my bloody face and struggling body and heard me scream like a feral animal breaking out of a cage. So I picture it.

I don’t remember anything about that incident. Certain parts of my brain were probably not functioning well enough for me to retain memory of it (but it’s a comforting thought to think that the brain is kind and very well could have suppressed those memories so as to save me from remembering the traumatic event).

I remember briefly waking up in the ambulance to a paramedic telling me that I put up quite a fight. The next memory I have is waking up in the hospital, still on a gurney, but now in a neck brace, parked in the hallway, and waiting for a room. My mom was already there, confused and worried and asking questions. I remember telling her that I felt like I had been hit by a bus.

All they knew was that Emily had an accident at work and was being taken to the regional hospital. Since I worked at a manufacturing facility, I can only imagine the number of things that ran through their minds as they drove to the hospital.

When my head hit the floor, my skull fractured vertically along my left eyebrow. The left side of my face was swollen for days and I had the best bruiser, all black and yellow and purple.

My family and I had no idea what was “wrong” with me. The doctors had no idea what was wrong with me. The CT scan only showed a skull fracture. The MRI showed normal brain activity. Solely based on the fact that I said I had tried to stand before I passed out, the doctors at the hospital thought it could be a heart condition and ordered more tests to be done. I was to see a cardiologist as soon as possible.

For someone who does not have epilepsy or is not a caretaker for someone who has epilepsy, you might expect this news to be shocking. Life-changing. Maybe even life-ending. But for me it wasn’t.

Since starting medication six months ago, my seizures have decreased in frequency and severity. It has been a long process, but I am well on my way to being seizure free.

I am not insecure about my disability, nor should I be. Epileptics are not freaks. We are not scary or possessed by demons. There is no cure, but there are medications and other therapies that can help.

Make sure there is nothing around the person that could harm them. Move any chairs, coffee tables, etc. out of the way. Only call 911 if the seizure is lasting abnormally long — more than 5 minutes. Most seizures only last about 30 seconds to a couple of minutes, so pay attention.

To my fellow epileptics, we need to stand strong and continue to share our stories so that we can reduce this stigma surrounding our neurological disorder.

But I hope that by hearing one person’s experience, you will be more comfortable around people who have epilepsy. It can be scary to witness a seizure, but if you understand what is happening, maybe you’ll be more likely to support that person rather than shy away (or the opposite: overreact).

One last note: please remember to be considerate of people with epilepsy. Some people may be uncomfortable talking about their experience. For a long time after I was diagnosed, I couldn’t stand people always asking me if I was okay or if I’ve found out what it is yet, or how I’m adjusting to my medication. It felt like such an invasion of privacy. I didn’t want everyone to know that I had epilepsy; I was still trying to work it out myself. However, now that I know about my disorder and how to manage it, I am able to comfortably disclose it to others. Others might not be there yet.

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