they say that people with epilepsy have all sorts of neurological is-sues, and maybe there is something to be said about that.
today i had the strangest feeling that i had been plucked out of somewhere and placed in the middle of a novel, or a life that i knew of, but wasn’t emotionally connected to.
it started when a taxi driver took me the long, wrong way to my neuro appointment today. that frosted my socks, and as i was explaining to him what he could have done and he was being silent, shruggy and rather chintzy with the apologies, i felt like this was my first time having a cross cultural experience. my vision blurred a bit, and the sense i had was, "this is hong kong". yes, of course it is hong kong, it has been hong kong for nine years…why only sometimes do i get this realisation?
up to the doctors office, and after the prerequisite waiting time that is possibly meant to reinforce that you are seeing a SPECIALIST and simply paying $140usd isn’t enough, to fully appreciate the neuro’s education and experience you should wait to see him…i was ushered in.
i was polite, and as he pottered about my eyes feel (as eyes would) on my file. and to a letter written (luckily?) in english from someone i am not sure whom, stating their belief that my mother, my mother!!! needed to come over to hong kong because i was not equipped to care for four children. the letter was written in 2004.
and who knows why, this set me off on a little teary tangent. i mean, tears didn’t plop on to his expensive desk, but i felt as reduced as someone on medication that makes her gain weight can feel.
i thought i had reached a detente with epilepsy. i have never been "angry" that i have it, sure it is an inconvenience, but if i were to do a check and balance, i have a great life. i wouldn’t trade it, as much as i dislike my inability to drive and really commit to an event. i like it, and i like most of the people in it. but this letter made it sound like i had a crap existence, subsiding only with the assistance of others. possibly, a burden?
reading about how my husband although very helpful is unable to watch me and the children all the time, the unbidden thought: would mc have been better off if he had stayed with his first wife?
i paid to feel this way?
i suggested the new drug i wanted to try, and the dr basically said no. my plan won’t cover it, and it is a new drug, so therefore, (ready for this stunning logic), there are no studies of the long term results.so instead, he added a second drug. and joy of joys, the common side effects of this one are skin rashes and weight gain. so here i go.
and then that was it and i went outside to collect my new meds.
it didn’t feel as powerful as i wanted it to, but then again, it might work. the doctor had the nerve to tell me i was no where near fat. i got a little angrier when the receptionist said they only accepted cash, and that the drugs were so expensive i had to run out to a bank machine…bleck.
i then went to a us import goods store where i can buy things like 1lb of dreft for $50 usd, and seeing the items took me to a flashback of shopping in the states, in those huge supermarkets, and here i was with a teeny cart massaging my way around counters. i remembered being in there freshly pregnant with the triplets because this was where i could buy the chocolate slim fast shakes i was drinking with my meals. it could have been any day, any year.
outside, i was suddenly back in hong kong, and outdoor marketers were holding a cooking session promoting their latest tofu fry-er. the smell was asia, the crowd and their noises, the congestion was asia. being pushed against another person and them not minding, because it happens so often.
i feel displaced today. i wanted this to be a powerful day. frankly, it wasn’t.
but the good news is, i had more staying power than i thought i did. i wanted to crumple up with a john irving book and read about someone else’s life rather than being part of my own. instead, i went home, picked up my kids from their cots, danced with jasper and carys to a favourite moby song, and did some work. took a call from someone i really would have rather not spoken to. basically, i dug my heels in deep and said, "i’ve gone down as far as i want to go."
epilepsy takes away my power, choices and control.
today i exercised that power, made a choice to not get tumbled over, and to keep on with my life. because as i have said before, it’s a good one.
i’m feeling precious, but strong at the same time. i could cry in a minute, (but won’t), but at the same time, i feel certain. and that my friends, when you most fear uncertainty, is a v. good thing and i am glad i chose to be the enduring tess i know i am. i needed this.
