Now

Summer sue

my next visit with my doctor was on wednesday, december 5. i was really looking forward to this appointment. i had just had visits from two lovely old friends over the weekend, which really did me the world of good. it was so wonderful to chat to like-minded people again, people that i hadnt seen in years and who didnt think that the pinnacle of the weekend was to go out and get fucked up. it was great to feel that i was loved, that i was interesting and fun to spend time with. that there were people who wanted to see me and didnt mind driving all the way to my house. this bit of social interaction coupled with a wonderful family braai for my sister's birthday on sunday, december 2 made a fantastic start to this month. i also started feeling that my relationship with my sister wasnt as icy as i thought it was after i gave her my old, but still very nice, digital camera for her birthday on tuesday, december 4.

but back to my latest doctors visit. i saw my lovely doctor with the good news that i had come off the baclofen without a problem. "excellent! then we can take you off the phenytoin next." it will take 3 weeks to get me off the phenytoin, but so far so good! and once i am off the phenytoin i can drink! now, i havent drunk alcohol in a year and by now i really dont miss it. especially after seeing how stupidly people act when drunk. this is a bit of a sore point between colin and i as he still loves to drink and take drugs whereas i just see it as pretty pointless now. but it will be nice to be able to have a glass of wine for christmas.

"what cant you do now that you would really like to do?" asks my lovely doctor. he guessed maybe driving?! hell no! i wanna be able to WALK further than 1 km (my maximum distance right now). i wannna DANCE! and i really, really wanna be able to have SEX! and to this end i am trying to push myself a bit more. i tan almost every day, which just makes me look and feel good. i swim after i tan. i try and walk around more and do more physical things than i used to. i am also trying to put myself in more social situations to try and train my brain to deal with all the noise and distraction again. i am coming off meds and i am trying to strengthen my brain. COME ON BRAIN! stop fucking around with me now, PLEASE! please, let me be normal!

so, everything is moving along smoothly and slowly, but i will only have a final angiography in february 2009 to check if my AVM has been completely obliterated. i will be 28 years old! of course, i am hoping to get better before then, hence all the 'brain training'. i dont know if i can handle another year of this.

but my old friends have slowly been coming to see me and with each visit i feel stronger, more positive, more normal. in fact, this week i have quite a busy schedule what with visitors every evening and then my cousin (whom i havent seen in 10 years!) is arriving from england on friday, december 14 and we are having a family braai (bbq). and then i am going out for dinner with a group of friends on monday, december 17 and i'll be damned if i'm gonna let 'the little bugger' stop me! colin is still being supportive and visiting me often, but he does now want me to start visiting him. we have had a few talks about the future, but that is for another post.

Mirrors

oh and, i have also found a positive to all the disruption caused by the workmen redoing our bathroom. they took all these square mirror tiles off the wall, which i have been playing with for my photography. i think i have taken some fantastic photos already and i cant wait to see what else i can come up with.

finally, the last convulsions that i had were on wednesday evening, december 5. they were scary, but i took a xanax and they only lasted for 15 minutes. one thing that i have to keep telling people and reminding myself is that, yes, i am perfectly fine now. but my recovery is not linear, i go up and down. at the moment i am on an upswing and i'm gonna see how far up i can go, but i am nowhere near the top of the mountain yet. the stupid thing with me though, is that the more of the summit i can see, the more impatient and frustrated i get with my body and my brain.

Then

1 November - 30 November 2007

Sis, me and mom

so, i have described how emotionally stressful and weird it has been for me returning home, but now i would like to start moving forward with my narrative. the month of november was full of changes, revelations, resolutions and readjustments.

i met my new doctor for the first time on wednesay, november 7. he is what is called a 'neurosurgeon interventionist', which from what i understand means that he is trained as a neurosurgeon, but he is also able to do the job of a neurologist, which is following a patient's case on the clinical side and dealing with medication etc. so, he is not just a 'slice and dice' man. he is a lovely man. warm and friendly, he puts you at ease immediately. and he is one of the most respected in the country. so, once again, i was very lucky to get a fantastic doctor. he was very funny and found my case bizarre and interesting.

eg: everyone knows the standard reflex test that a doctor gives you where you get tapped on the knee by a hammer and your leg shoots forward. now, when this test is administered on me the whole side of my body does this jiggle and shake collapse all the way from my shoulder. when my new doctor saw this his eyes lit up like 'a kid in a candy shop' and he asked shyly "please may i do that again?". there were all sorts of other things that he found fascinating about my condition, mostly to do with muscle tone in my joints and my many other symptoms. i asked him about the constant popping that i experience in my ears and he just gave me a whimsical smile and said, with a wink in his voice "let's just leave that one for the moment, shall we?" why?! because he has no idea why i have that particular symptom ;-).

but the best thing about my visit to my new doctor is that he was adamant that i should slowly start coming off ALL the medication that i have been taking for so long. "do you think they're helping?" he asked. ummm ... NO, actually. so, the first drug i was weaned off was the baclofen. it took a month of me slowly reducing the amount of tablets i take by one a week. by friday, november 30 i was off the baclofen for good with no problems. it actually made me feel better to be off it because, of course, all these drugs that i am taking can actually cause a lot of the symptoms that i already suffer from like nausea, seizures, imbalance, loss of muscle control etc etc. the other fantastic thing about finally being off the baclofen was that i now only had to take medication twice a day rather than 4 times a day. sometimes i still get anxious around lunch time thinking that i should be swallowing some pill or other, but NO, i dont need to. HOORAY!

however, i still got really sick in november a few times where i had hour long convulsions and was vomiting etc. on thursday, november 15 i had terrible neck spasms and full body muscle stiffening (extremely painful) and was vomiting thanks to uncontrollable stomach spasms that made me rock backwards and forwards very quickly, shaking my whole body. this is of course accompanied by fantastic waves of nausea. the reason for these horrible spasms were discovered thanks to my mother, who is a nurse. i had been taking these headache tablets that were packed with ibuprofen and aspirin. my stomach is very sensitive at the moment and it was actually the headache tablets that were making me vomit. so, now i take paracetamol, which is very gentle on the stomach.

on monday, november 19 i went to stay at colin's house for a few days because my mom was having the bathroom ripped apart and put back together, which threatened to be very noisy. i was very upset about this at first as i felt that i had come home to get away from the noise of construction only to have it follow me into my very own house (they are still working on the bathroom now, actually). anyway, by tuesday, november 20 i was sick as a dog. my nausea was so bad that i couldn't get out of bed all day and i was having horrible convulsions and vomiting again. why?! i think it was a combination of stress and rich food. my grandmother (dad's mom) had had her 80th birthday lunch on sunday, november 18 and i had eaten loads of rich food and then i went to colin's house where there was no salad and ended up eating way too much pizza. i think all of this combined to make me horribly ill. the worst thing about it was that an old friend of mine was supposed to come and visit me on tuesday night and i had to cancel 45 minutes before she arrived because i was vomiting, crying and shaking on colin's bed like a rag doll. i also had to cancel with two other old friends who had planned to visit me on wednesday, november 21. i was driving back home with my mom at the time that they were going to visit.

having to cancel these visits was really awful for me. i was feeling terribly lonely and isolated, while colin was running around partying and seeing friends, i had been (and still am) desperately trying to get into contact with old friends and cajole them into coming and visiting me. i feel like i am constantly doing PR work to promote myself. bugging people with sms's and messages over the internet basically saying "hello! i'm over here! come see me! PLEASE!" but colin was/has been great about visiting me and slept/sleeps over at least one night a week, which makes me happy. especially since i kept stressing about him going out to clubs, getting fucked and then finding himself in bed with some beautiful cape town chicky before he even realised what he was doing. it's not that i don't trust colin, but i don't trust intoxicants like drugs and alcohol that make you forget who and where you are. of course, he would never do anything like that to me sober. i know he loves me, is devoted to me and i love him, but that little bit of insecurity is still there sometimes. i cant go out and party with him. we still cant even have sex. seriously!

but on the social side i did manage to spend time with my grandparents, both my dad's mom and my mom's parents and my uncle (mom's brother) and my aunt (dad's sister). and i really love their company. my family has become incredibly important to me after being away for 3 years and then getting sick. unfortunately, i was still struggling to connect with my sister and her boyfriend. but then, my sister and i have always been very different people. she is quite anti-social and i'm not sure she really likes me that much (even if she has to love me ;-).

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.