Anniversary

happy anniversary to me! happy anniversary to me! yes, once again it is another anniversary. today it is the 10 month anniversary of my gamma knife radio surgery. 2 more months to go before i hit a year. apparently that is when you really start to see progress and things really start to happen in your brain. i cant wait! the little bugger is gonna fry! although i feel that a lot has been happening in my brain already. i am miles away from where i was when i had the surgery. i am by no means 100%, but i am a lot better. and taiwan, never mind my actual surgery feels light years away. being home is still a bit weird, but i am getting used to it. although many things are still uncertain and many things could change, i have a feeling that things are gonna 'go my way' (and colin's way hopefully). and it's almost christmas. yay!

Anniversary

yet another month has passed and yet another anniversary must be marked. it has now been 11 months since i was diagnosed with an AVM on my brain stem and since i stopped smoking. the moment that my life changed forever was almost a year ago now, but i can still remember it so clearly.

i dont even need to close my eyes and i can find myself back in that hospital bed with the doctors around me trying to 'break the news' and then explain the news to me in their broken english. i can still feel my panic and terror when i finally understood my situation and the desperation i felt as i tried to phone colin and then waited for him to come to the hospital and help me before i dissolved in a pool of tears.

i distinctly remember the last cigarette that i ever smoked. how cold it was outside and how awful the cigarette tasted. how the stupidity of the habit was revealed to me ... why spend money on slowly killing myself when i had actually been born with something that would do the job anyway!

and now? i am still playing the waiting game. it is an exhausting mind game where boredom, loneliness and depression are battled for an eternity, the entire day and often the night as well. night thoughts can be the most destructive, the most deceiving. small problems become impossible mountains, little mistakes (mine or others) herald the beginning of world war 3 and the collapse of life as i know it. but that is how i have to do it, day by stinking day. just get through this day, just get through this day, just get through this day, and somehow, magically, all those days will suddenly coalesce to form 2 years of memory and i will be normal again.

but i am being a killjoy. i am doing better. physically i am slowly recovering (which i will talk about at greater length in another post) and i have small joys to look forward to. christmas is coming and that means family. and this is a special christmas full of family; cousins, uncles, aunts that i havent seen in 10 years! my first christmas at home in 3 years! there's anther post all to itself. today is a good day! maybe this time i will be able to hold on to this feeling and replicate it over and over and over again for an eternity.

Adjusting

Home

colin and i landed on south african soil at about 8 am on monday, 29 october. being south african citizens immigration was easy and we got a friendly welkom terug (welcome back) from the immigration officer. i hadnt heard or spoken afrikaans in 3 years and panicked because i couldnt think of how to reply. i automatically wanted to say 'thank you' in chinese (xie xie) and couldnt for the life of me remember how to say 'thank you' in afrikaans. luckily colin was ahead of me and said dankie. oh yes! that's what to say, "dankie" i murmured. still feeling like a stranger in my own country i was wheeled through baggage claim, customs and suddenly there was my mom's face. i was so relieved to see that face. i was safe now. everything would be sorted out now. i would be looked after.

i had a lightning quick meeting with colin's parents and before i knew it i was packed into mom's car and driving down the highway to my old house. i was feeling sick but full of nervous energy and confusion so i babbled the whole way home. looking out the window, everything was the same, but different. nothing much had changed, but i had changed, i had forgotten what cape town looked like, what it felt like. i knew it should feel like home, but somehow i felt like an alien looking at someone elses memories and trying to make them mine. this unnerving feeling continued as i entered my mom's house.

Fairies

a lot of remodelling has been done in the last 3 years and there is new furniture in different places. new rooms in different places. i didnt even know how to make myself a cup of tea and i was especially upset that the old living room was empty and that the TV and DVD player is in my sister's bedroom. i had no couch to lie on and watch TV anymore. no living room to sit in for a 'change of scenery', just my bedroom. i felt very displaced. my old bedroom looks the same, with the same fairies i had painted on the walls in 1998, when i was about 19 years old. far from being soothing and welcoming this old familiarity confused and upset me. this was my room, but from another life. it wasnt my room anymore. it didnt reflect my personality at all and instead of feeling pleasant nostalgia i just wanted to rip all the posters off the wall and repaint the room immediately (i still do). i wanted to cry, "this isnt me! where am i?!"

besides all these physical changes in the house there were also social changes. my sister's boyfriend, whom i had never met, was living in the house. he knew how to make himself a cup of tea. he knew the family dog, whom i had also never met. he belonged in the house, in the family more than i did. i felt like an intruder. i didnt know what was going on in any body's lives, i didnt get the inside jokes, i didnt know the rhythm of the household. i was just this strange, ungainly presence. i wasnt a south african anymore, i had no common ground, no idea how to start a conversation with anybody. it wasnt that my mom, my sister and her boyfriend didnt welcome me into the house, but just that i didnt fit the house. i was paranoid and lonely, and i still am sometimes. i find myself crying and not knowing why. i just feel lost, empty, uprooted. of course i was, and still am, suffering from extreme reverse culture shock. going to taiwan was easy because i expected everything to be weird and not to understand anything. but after 3 years there i had got the gist of the place. i was independent there. i was housebound, but could call a taxi if i needed to go somewhere. i cant do that in cape town.

the shock is worse coming back home because it's almost like going through a time warp. you are back in the same place you were before you left, but in an alternate universe where certain things have changed slightly. i feel like i have regressed. i am back in high school. stuck at home, no job, no car, going nowhere, waiting for friends to come and visit me. this is the feeling that makes me cry a lot.

my mom took a week off work to try and help me settle in and i was (and still am) terrible to deal with, the first 3 nights i was sick and had convulsions. my sister and her boyfriend got a crash course in sue's 'idiosyncracies' at 5 am on tuesday, october 30 when i ended up lying in the passage outside my mom's door convulsing. to their credit, they have all dealt with the horrible sight of my spasms well so far. and have tried to be understanding of my freak outs and crying fits. my sister even sat with me on thursday, 1 november when i suddenly decided that i had to pack all my things away and reorganise my bedroom in the middle of the night. i was just desperately trying to find my place in this new world and still am a lot of the time. i feel like my mind and my emotions have not caught up to where my body is yet.

but there are a lot of positives to being back home. i have a garden and a swimming pool and it's summer! easy access to all the food i love that was so difficult to get in taiwan and some food that i havent had in 3 years. i am being taken care of and dont have to worry about things like bills and shopping lists. i get to spend time with my family, especially my grandparents, and i am loving their eccentric, fun-loving company. colin and i also get to have a much-needed break from each other. although he has been visiting me at least once a week and we are often in contact over skype, we arent fighting anymore. sometimes i feel like the bond between us is more tenuous now because we are not living together and other times i feel it is stronger. see what i mean by confusion!

so, i am still trying to place myself in this new world that i find myself in and i still feel like an outsider a lot of the time, but that feeling is diminishing. i still struggle with loneliness, impatience and depression, but i am slowly finding new ways of dealing with these problems at home. i find my house very empty and the social situation in it very unfriendly (eg: my sister and her boyfriend spend most of their time in their room with the door closed), but i am learning to deal with this. one of the things that has been helping me is visits from a few good friends. of course there are many of my friends who i have not yet seen, but the few that have come and spent an afternoon chatting with me have made all the difference.

the situation i now find myself in is confusing, complex and incredibly emotionally-charged. i am happy to be home and away from taiwan, but also depressed at the same time. for now i am just muddling my way through as best i can and desperately trying to focus on the positive.

Revolution

i am home now and have been for over a month. the experience of returning home after so many years has been complex and intense on many different levels. because of the drastic change in my environment, my routine, my life i feel that i need to convey these experiences in a slightly different way. so, i have decided to write about my return to south africa according to impressions or themes rather than a timeline. i dont know if this will work for the reader, but i know it will work for me. my experiences of home in the last month or so are so fluid, so full of emotion and confusion that there is just no way i can share them according to a rigid timeline of events. being back in south africa is the ongoing event; here follows a muddled account of my impressions.

Flying

27 October - 28 October 2007

We arrived at the airport at about 2 pm on sunday, october 27. me in my wheelchair and colin pushing our horribly overweight luggage. we got into the queue for check-in secretly hoping that we would get one of the two ladies on duty rather than the man, who looked a bit mean, as we were in need of some serious sympathy if we wanted to get all our luggage onto the plane. damn! we got the guy. we wheeled over to him and handed him both our tickets and the original of my doctor's letter that such a huge fuss had been made of. he barely glanced at the doctor's letter and gave me a sticker that said MAAS with a picture of two hands shaking. to this day i have NO idea what MAAS stands for, but i had to wear the sticker on my chest for the entire flight and all my baggage and my wheelchair had the same insignia attached to them. so, obviously this indicated to all airline personnel that i was 'handicapped' in some way.

colin nervously put all our luggage (except the computer casing) on the conveyor belt to be weighed. we were 4 kg overweight. how is that possible?! we had weighed our bags at home and they had come to 50 kg exactly, NOT 54 kg! well, the crappy scale had obviously been a waste of money! the man didn't seem too perturbed by the fact that we were overweight so colin asked if he could just add his computer casing to the pile, "just to see". we were now 15 kg overweight. "that's okay, we cant pay for all of that. we will leave the computer casing behind."

"don't worry. i'll give you a special deal."

and with that, we watched every last bit of our ludicrously overweight luggage roll down the conveyor belt for FREE! sometimes, we do get lucky! i have stopped counting my blessings, but that was definitely one of them.

then i was wheeled along by an airline employee and jumped straight to the front of the line to get onto the airplane (wheelchairs can be very useful in queues ;-). but to my astonishment, i wasnt the only wheelchair passenger, there were in fact 4 of us. 4! what are the odds! i was wheeled up to the entrance of the plane and then was helped to my seat by the stewardess, my wheelchair taken down to the cargo hold. We had window seats, but unfortunately not in the front row. well, unfortunately for colin anyway. you see, his legs are so long that it is incredibly difficult and uncomfortable for him to sit behind another row of seats in economy class. he had informed the airline of this and normally they were very accommodating, but not this time. but our luck had not completely run out. as we watched the rest of the passengers slowly file on we realised that we had an extra seat all to ourselves. hooray! i could lie down and colin could stretch out his legs a bit. i took my sleeping tablet (stilnox) and slept comfortably for the 4 hour flight to singapore.

take off and landing proved the most uncomfortable for me. the change in pressure made me feel like some unseen hand was pushing my brain down into my neck and my head down into my back, it made my ears pop and my body shake in my seat. but i made sure i was drugged up to the hilt with xanax and stilnox so i didnt feel too awful.

we arrived in singapore airport with about 4 hours to wait for our flight to cape town. i was feeling groggy and grumpy and just wanted to sleep. there were no suitable chairs that i could lie on so colin left me lying on the ground in the airport while he went to try and buy a bag. he was, of course, unsuccessful as he had no singapore dollars so he sat down next to me and tried to cheer me up by showing me videos on his ipod. colin is often very good at getting me out of my black moods, as long as he doesnt get into a black mood himself ;-). suddenly it was time to board the plane and by the time we got to gate 3 we were at the back of a queue full of cranky south africans and taiwanese. sitting in my wheelchair i found my countrymen huge, loud, obnoxious, almost scary at times. i felt no kinship with them as they pushed and grumbled. i was in complete agreement with the taiwanese, these wai guo ren (foreigners) were very rude. it was the strangest sensation and it made me worried about going "home". was south africa really my home anymore?

my irritation level also started rising as no one was showing any consideration for the girl in the wheelchair. colin, who was struggling to push me and our baggage at the same time, and i were being jostled right to the back until an airport employee noticed us and came to help. YAY! my wheelchair privileges were re-invoked as we were pushed to the front of the queue and i was parked off to one side as colin put all our baggage through the X-ray machine. i watched in horror as my bags were rifled through and all my bottles of cream and deodorant thrown carelessly into a bin. i was told that i couldnt bring my water onto the airplane either. i started to protest, how could we be allowed to carry these things through taipei airport security only to have them tossed into a bin at singapore airport?! but it was regulations. "okay, okay." i would allow them to treat my personal items as rubbish just so that i could sit in the official 'waiting area'.

there was about an hour wait before we would be allowed to board the plane and during that time i needed to take my medication. but now i had no water. hmmm. i asked the lady who had helped me earlier to please get me a cup of water so that i could take my medication. "no, sorry. no water allowed in this area. you can get water on the plane." and that was that, i was denied the right to take my medication because of airline regulations. disgusting! i entered the plane in a foul mood. i was terrified as this was to be the longest part of our journey, 12 hours, i had just been treated very rudely and unfairly and i was feeling like shit! i sat down and disconsolately watched the other passengers file in. no window seat, no extra seat for us this time. and then, the nail in the coffin. across the aisle from us sat a wealthy south african couple with a third seat between them. they had obviously not been able to get into first class and so had to settle for buying three seats in economy class. this is when i started crying. it was so unfair, there was nothing wrong with them, they didnt need the extra seat, they could just afford it. while i, sick and terrified, had to sit upright for 12 hours.

colin calmed me down by stuffing xanax and stilnox into my mouth. this action was repeated every time i woke up. during the journey i woke up very confused a few times, i would try and get up to get some water from the kitchen and would be restricted by something?! then the realisation would come, "oh, i am on an airplane! ooops!" in the end the flight was not too bad and when we came in to land, i got a glimpse of the blue sea and green mountains of cape town, my HOME. i was HOME, we were HOME. i had made it, we had made it. a weight was lifted off our shoulders. i was crying and everything was going to be okay.