Sophie fought from the very first moment. I can't count the number of EEGs that we've put her through, but this might top them all as the worst or the one that she fought the most. Maybe it's because she's on fewer drugs and has more wherewithal to protest. Maybe it's because she's even more sick of it all than I.
Reinforcements were brought in. This is Rosie, The Reinforcer. She put her arms in braces so she couldn't flail or hit us with them. I would have cried, but instead I made dark and bitter jokes and alternated with murmured words of comfort to Sophie even as I pressed my fingers into her tiny hands and lay my legs across her lap.
They got the job done with my help and an extraordinary effort by Oliver. If I even began to tell you how much Oliver helped us, I might dissolve into a puddle of tears.
I hesitated to put these photos up -- even on Facebook, which I did last night. Then I decided that it'll only increase awareness for how miserable this disease is for not just Sophie, but for all the kids and adults like her, for their siblings and for their parents. My fellow epilepsy peeps -- I'm not sure how we do it, but we do it.
I am perhaps going to exist forever on the samsara wheel that is epilepsy because I hate it with all my heart. I hate all of this shit. Resistance comes and goes, and yesterday, it came.
Oliver asked what we were going to do with the information gathered by the EEG.
I said, Nothing.
A friend texted me this question:
I swear there have been no advances in the technology of neurology in forever. why the fuck do they not have a better way to do this yet?
I don't have an answer for that, and Spock died last week at the age of 83.
Sometimes, if I'm lucky, despair morphs into anger and then humor. Last night, I lay on my side in front of the video EEG monitor and noticed that Sophie looked like a saint, and unlike all other cameras, it actually made me look thin and even exotic.
Not to mention, terrifying.