Dealing with epilepsy · Misconceptions

How epilepsy changes your relationship with planning

Planning used to be simple.

Now it’s layered.

Not complicated. Just… heavier.

Planning becomes risk management

It’s not just:

  • where
  • when
  • how

It’s also:

  • sleep
  • stress
  • medication timing
  • exit options
  • “what if this goes wrong”

You stop planning events.

You start planning outcomes.

Spontaneity gets expensive

“Let’s just go.”

That works if your body is predictable.

If it’s not, “just go” can turn into “pay later.”

Late nights, missed routines, extra stress — small things stack.

People call it overthinking.

It’s not.

It’s memory.

Continue reading “How epilepsy changes your relationship with planning”
Misconceptions · Dealing with epilepsy

What people get wrong about “looking fine” with epilepsy

“You look fine.”

That sentence does a lot of work for people.

It closes the topic. It removes discomfort. It skips the part where they might have to think a bit harder.

And if I look fine, then everything is fine.

Convenient.

Looking fine is a performance

Most of what matters isn’t visible. People might see a seizure. They don’t see what comes after.

The confusion.
The fatigue.
The quiet “something’s off” feeling that doesn’t go away just because I can stand up again.

But if I can talk, walk, respond, then the conclusion is obvious:

Back to normal.

Except it’s not.

Continue reading “What people get wrong about “looking fine” with epilepsy”
Blog · Dealing with epilepsy · Way too personal

A friend in need

Continue reading “A friend in need”
Blog · Dealing with epilepsy · Way too personal

Is it fear or lack of respect that you see the most?

I was speaking with one of those Facebook friends that you never met the other way. She also has a very specific disorder, although not epilepsy, but close to the spectrum.

When asking what she hates the most about her condition, she said “the way the others perceive her”. Thinking about epilepsy, how do friends and acquintances see you and what do you hate about it? I saw in the eyes of people that know about my epilepsy many things, but two stick out:

  1. Fear – people fear that you’ll have a seizure anytime, anywhere. But the fear is not that you’ll get hurt, but that they won’t be able to handle what is happening.
  2. Lack of respect – there are many myths about epilepsy (see my past articles) and many people believe them. Many people think that we are all photosensitive, or that we inherited it, or that we have a smaller IQ because of it. The last one is the one I saw many times, regardless of saying to people that Caesar, Dostoyevski, Agatha Christie, Alfred Nobel, Van Gogh and Theodore Rosevelt (among many others) had it.
Dealing with epilepsy · Way too personal

Vacationing with epilepsy

A couple of weeks ago, I went on vacation, a real vacation with the family in Greece just to relax and enjoy the sun. Going beyond the sunstroke (which was entirely my fault because I thought I didn’t need sun cream as I have a strong pigment and I get darker easily without being affected by the sun), a problem was that I had a seizure.

We stayed in a five-star resort with several buildings, each with 5-to-10 rooms and two floors (ground + first level). We stayed at the first floor in one of the building.
Moving on, with a 2-year old baby, we had a baby stroller that we needed to get up and down the stairs several times a day. One of these days, when getting ready to get it down the stairs, I had a seizure right on top, a person with epilepsy’s worst nightmare: falling down the stairs. Continue reading “Vacationing with epilepsy”