Recovery

April 1 - April 17 2007

i continued to have strong, freaky convulsions in April, but they were less frequent and shorter; 40 minutes instead of 3 hours. i was also still experiencing weird changes in symptoms, like for about two weeks i had trouble breathing and terrible chest and back pain, which led dr. tai to order an x-ray of my spine - nothing there! then it just disappeared for no apparent reason. or my hand and arm would start shaking for a few minutes every day and then that would also disappear. i became almost detached from my body and all the weird things it was doing, i had given up trying to control it and had just accepted that i was a spastic. except when i had the terrible tonic part of my convulsions. my neck would stiffen and bend backwards, actually painfully digging into my back. this was especially scary as i could feel a pain, a tightening, an electric shock in my brain. in fact, i think it is the alien, crawling pressure in my brain that scares me the most. i can feel that something bad is happening and it feels life-threatening.

dina was always calm during my convulsions, she would just give me my extra clonazepam and xanax and then just sit with me until my spasms stopped. colin is not so calm, he gets scared and upset watching his girlfriend suffering so much. often he panics and just keeps shoving medication into my mouth and almost starts shouting. he also tries to hold my body when it is shaking and that is actually the worst thing you can do for someone experiencing spasms, but he just wants it to stop.

i was also still housebound and would start wobbling and falling over if i walked or did too much around the house too quickly. i felt like an old lady. i had to get up slowly, and in stages from a seated or lying position to give my brain time to 'catch up' with the orientation of my body. i only left the house to see one of my two doctors and then i would use a hospital wheelchair. but i could see slow improvement. even if the convulsions weren't less violent i was now only having 2 or 3 a week, as apposed to 1 or 2 a day. and i could start seeing friends.

people came in ones or twos to visit. at first i would feel very tired quickly and become short of breath from all the talking, but i quickly regained my 'chatting fitness'. i only had trouble if there was more than one conversation and music going at the same time, then i would start to feel dizzy and confused. i also experienced this when going outside, all the movement and sound of a busy taipei road would make me feel disoriented. my brain still wasn't quite up to processing so much information so quickly. i would just stare blankly into space, unable to focus on anything, especially since i was still having trouble focusing my eyes and still couldn't read a book. colin says that when the sights and sounds get too much i look like 'a rabbit caught in headlights'. i feel like one too.