Worse

January 1 2007

i went back to work with the explanation that i had inner ear trouble. i took all my medication, but i kept getting worse. eventually i couldn't walk around the house, let alone catch the underground (MRT in Taiwan) to work. i was falling all over the place and my spasms were getting worse. eventually i called my work and told them i had to take at least a month off to let this inner ear problem work itself out. my big mistake was resting for a few days, feeling better and then thinking i was cured. i would go back to work and overdo it and end up back at home flat on my back. this has been a particularly difficult lesson for me to learn; not to overdo it even if you are feeling a bit better. I recently had a friend who learnt this same lesson. She was in hospital with pneumonia for two weeks. she checked herself out and went back to work against friends and doctors suggestions. she lasted 5 minutes on monday morning and went home in tears. i didn't say 'i told you so', but i wanted to. it is hard for us as human beings to understand our sick bodies, we just remember ourselves as healthy and so badly don't want to be invalids - those 'others' you see in wheelchairs.

New Years Eve: January 1st is a public holiday in Taiwan and it was a monday so we had a long weekend. colin and i spent New Years Eve on the bed, while our friends partied; me having violent seizure-like spasms for hours on end, crying for my mother. These 'seizures' are difficult to describe. they take over my whole body, but i am still conscious. often my stomach muscles spasm so my body rocks back and forth on the bed, or my neck spasms so my head spins around. my eyes roll back in my head (to me it feels like my eyes are closed - weird huh?). my legs stiffen and kick. sometimes i can't talk or i pull strange facial expressions. my body either shakes very quickly, similar to an epileptic seizure or my muscles stiffen into an awkward position. so, often my back arches, my neck stiffens, my toes and fingers curl and i can't move a muscle, which lasts for maybe 30 secs. they are terrifying to watch and terrifying to experience. especially when we didn't understand what was causing them. a 25 year old and a 26 year old alone in their flat in a foreign country. we weren't exactly equipped to deal with it.

For me, i can feel things happening in my head, like ants are crawling through my brain, or someone is pushing down on a part of my head. sometimes i have stabbing headaches that shoot through different areas very quickly, or i feel like a strong electric current is passing through my brain and my neck. i often feel like and say my brain is trying to kill me. during the bad 'seizures' i do feel like i might die and often wish for it. at least it would end the suffering. there is nothing more horrifying than having no control over a body that has been yours to command for 26 years. it is an alien feeling that no one should have to experience. you keep thinking, 'i can stop this if i really try', but you can't. you are completely powerless. i don't react well to this and often dissolve into hysterical tears and shouts of wanting to kill myself if my brain doesn't finish the job.

but i digress. New Years Eve was the proverbial 'nail in the coffin'. we decided to try another hospital and another doctor. we went to a neurologist at National Taiwan University Hospital (Tai Da) that tuesday, January 2nd desperate for help. i purposefully didn't take my medication so it wouldn't mask my amazing variety of symptoms. we waited for four hours and nearly went home in disgust. by the time i saw the neurologist i was a mess. i couldn't walk or stand properly, my eyesight was completely blurred, and my whole body was spasming like crazy. i was petrified, in tears, but glad that i looked so bad. i could see the shock in the doctor's face immediately. the strangest thing was my reflexes. she would hit my knee and that whole side of my body would collapse and shake. when i lay down and she lifted up one leg by the knee, my neck and stomach would spasm and lift me off the table. i could see she had no idea what it was, the symptoms were too various and almost unrelated. she prepared an envelope for me and said the hospital would call me when they had a bed free.

Finally, I was going to be put into hospital for tests and observation. it had only taken 2 months for my symptoms to become severe enough. what I had felt in my body all along was now being verified by a doctor.