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May 17, 2009


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I wonder if being conscious during a seizure is more common than generally thought. My daughter is almost always conscious. Like you, she simply can't communicate but that doesn't mean she can't hear or see or feel what is going on around her--though she might also have lost any assortment of senses during the seizure, too. For her, it's generally sight that goes if a sense is going to cut out. I'm cautious about touching her or talking to her, because she's told me that it can make the seizure worse if she feels she has to struggle to communicate. On the other hand, sometimes I can see in her eyes that fear that is unleashed by seizure, and then I will hold her hand and stay close. And most of the time, she is like you and seizes alone, and just takes it as part of her daily routine.


After surgeries or procedures, tv is similarly comforting to me. I often have no idea what I watch later, but it really helps at the time. Otherwise, like you, I can do without it.

Lisa Moon

Wow, thank you for that view into what it is like for you to experience a seizure.

Not having them myself but having once been a carer at times for people with them, it was an interesting perspective for me. It makes me feel glad that I was always able to stay with them, touching them, while they had their seizures. I don't know if they were conscious at all (they were non-verbal mostly) but regardless, perhaps my presence offered some comfort? I'd like to think so. It was scary for me to watch, but I felt that was NOTHING to what it must be like to go through that...

What this did remind me of is how I felt about the Internet after my injury... those months which stretched into years when I was alone, day after day and night after night; mostly immobile or with very little mobility. A bit of a lifeline, a ray of hope to hold onto...

I'm glad that when there is no one to hold your hand during those scary moments that this bit of technology helps just a little.

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