finally, things have come full circle. this is my finale, my final post on this blog - doesn't it have an air of finality about it? (hee hee) ok, enough with the crappy word jokes. it is a new year - a time of renewal, a time of change and 'resolutions'. i don't believe in new year's resolutions, i make resolutions all the time - most of which i don't stick to. but there has been a resolution to 'the saga of sue's brain'. i can now truly write THE END of this story.
my mom and i got up at 5 am on tuesday, december 2. we arrived at the uct private academic hospital at 5:45 am and i was lying in a hospital bed, dressed in a hideous gown that flapped open at the back, was too big for me and seemed to be made out of industrial strength canvas by 6 am. professor taylor (my south african neurosurgeon) would be performing the angiography at 7 am. at 8:30 am dr le fevre (prof taylor's partner) came to see and talk to me about the angiography. he would be performing the procedure and wanted to know where my avm had been. NOT a good start. i was tired, hungry and extremely nervous. i knew what was in store for me and i was trying to think of any way out of it that i could. i know that i am ok, i don't really need to have an angiography to check - really, it's not necessary. i'll just be on my way then, thanks!
then i was being wheeled into the theatre, an anaesthetic patch on my right groin area. there were the familiar banks of screens, the huge white x-ray machine, the table i would lie on. the nurse, dr le fevre and the radiologist where very nice people and they were chatting to each other and to me. i joined in the conversation in an attempt to hide my spine tingling fear. it actually did help a bit. after the anaesthetic injection it was time to feed the catheter into my femoral artery and up into my carotid artery in my neck. the entry point was numb, but as soon as the catheter had moved in a few centimetres i felt an excruciating, sharp pain in my gut. i started sweating, my blood pressure dropped, my heart rate dropped and i felt like i was going to vomit. AH! STOP! STOP! it was scar tissue from the first two angiographies that had been broken by the catheter. the pain was so deep that it actually made my whole body go into shock. i lay there trying to breath while the nurse made me smell surgical alcohol to help with the nausea. "don't worry, we can take as long as we like." WHAT?! that's the last thing i wanted. i wanted this over and done with as quickly as possible. things were already going to take longer because no one could remember where my avm had been. right or left? front or back? back right i think, but i wasn't sure. so the catheter would have to be fed in and out of different arteries in different sides of my head. the revolting, burning, lightening flash dye would be injected into my cerebral blood flow no less than four times!
after about 5 minutes i started feeling better and the rest of the procedure was pretty routine. dr le fevre searched and searched. there was NOTHING! not even an absence of something, but just nothing. everything was completely normal, as if i had never had an avm before. as if the gamma knife surgery, the seizures, the nausea, the fighting, the crying, the pain, the terror, the medication, the hospitals - NONE of it had happened. i was smiling and crying quietly to myself as i looked at the monitors. that is my brain and it is perfect. relief? formality? bullshit! this was the single, greatest victory of my life. it was all finally and officially OVER. think of every emotional adjective that you can and then mix them up inside your stomach and you are still nowhere near how i felt that morning. tuesday, december 2 2008 - i will love you forever.
and now? life is back to normal. i continue to organise things for taiwan. 11 february is getting closer and closer. b is starting to organise himself for taiwan too. he will be arriving in early april. we will be apart for two months. how awful! i'm going to miss him! a new chapter in my life has started so it is time to close this one. i am wishing myself luck and happiness in my future endeavours. i don't feel i have changed that much in the last two years. TWO YEARS! but i am definitely, FINALLY, moving again. onwards and upwards! :-)
Sunday, 4 January 2009
Monday, 1 December 2008
Relief
i will be getting up at 5 am tomorrow morning to get to the UCT academic hospital at 6 am. my final cerebral angiography is scheduled to start at 7:30 am and will be performed by my neurosurgeon, professor allan taylor. i will have to lie on my back with a kilogram sandbag over the hole in my femoral artery for four hours - the shortest time i've ever had to lie like that for. i don't know why it is so short - maybe taiwanese hospitals are just more cautious than south african ones. i haven't been allowed to eat or drink anything since 9 pm and will only have something after the procedure. no problem there (although water would be nice).
my mom is taking me through tomorrow. b has a lecture in the morning and work in the evening so i probably won't see him. but i don't mind - it is better like this. i have family to be with, my boyfriend of 5 months doesn't need to be involved in the drama. that was what was so awful in taiwan is that colin had to be everything to me. but now i have a support system - well, mainly just my mom. i don't think my dad even knows i'm going in tomorrow. and honestly, i only noticed now that neither he nor my sister have called me. i guess i am just used to being distant with my family. i know that should sadden me, but it is just how it has always been. that doesn't mean that i don't love them though.
and how am i feeling? a bit numb actually ... i feel like all the sickness and time spent in hospital happened to a different person in a different time. these things are in my memory, but feel separated from my heart. perhaps it is just the passage of time - it is better that trauma is forgotten, details be
come blurred and knife-edged emotions are dulled. how would i continue my life otherwise? i so just want to be normal. that wish has not changed. was that not my litany on this blog ... "i just want to be normal!" i screamed over and over.
well, i am NORMAL (almost - i still need to get off the last 20 mg of cipramil) and damn does it feel good! no one who meets me need ever know that i had brain surgery in a foreign country and took two years recovering from the awful affliction, unless i want them to know. THANK GOD!
yes, i am not numb, i am RELIEVED. so fucking relieved. of course the angiography is going to be horrible. the thought of the invasive process makes me feel nauseous ... eugh. but i cant wait for it to all be over ... once and for all! tuesday, december 2 2008 - just short of two years after my gamma knife radio surgery on february 12 2006 - the official END. it sounds so long. it was so long. i missed out on two years of my adult life. and yet, it feels as though everything happened in the blink of an eye - it was a movie that i watched about another person's life ...
maybe this day is not making a big impact on me because afterwards, on wednesday - nothing much will have changed. i will still be jobless, i will still need to borrow money from my dad, i will still spend most of the day sitting at home reading or seeing friends. the neverending holiday. am i bored? am i uninspired? i don't know. i must be. motivation? what is motivation? no, that is not really true. i have been doing some research on teaching diplomas that i could study while overseas, i plan to start running and i still have things to organise for taiwan.
no, everything is good. b has decided to meet me in taiwan in march next year. i am enjoying spending time in cape town with friends - not so desperate to go back to work anymore. ha ha ha! life continues ....
my mom is taking me through tomorrow. b has a lecture in the morning and work in the evening so i probably won't see him. but i don't mind - it is better like this. i have family to be with, my boyfriend of 5 months doesn't need to be involved in the drama. that was what was so awful in taiwan is that colin had to be everything to me. but now i have a support system - well, mainly just my mom. i don't think my dad even knows i'm going in tomorrow. and honestly, i only noticed now that neither he nor my sister have called me. i guess i am just used to being distant with my family. i know that should sadden me, but it is just how it has always been. that doesn't mean that i don't love them though.
and how am i feeling? a bit numb actually ... i feel like all the sickness and time spent in hospital happened to a different person in a different time. these things are in my memory, but feel separated from my heart. perhaps it is just the passage of time - it is better that trauma is forgotten, details be
come blurred and knife-edged emotions are dulled. how would i continue my life otherwise? i so just want to be normal. that wish has not changed. was that not my litany on this blog ... "i just want to be normal!" i screamed over and over.well, i am NORMAL (almost - i still need to get off the last 20 mg of cipramil) and damn does it feel good! no one who meets me need ever know that i had brain surgery in a foreign country and took two years recovering from the awful affliction, unless i want them to know. THANK GOD!
yes, i am not numb, i am RELIEVED. so fucking relieved. of course the angiography is going to be horrible. the thought of the invasive process makes me feel nauseous ... eugh. but i cant wait for it to all be over ... once and for all! tuesday, december 2 2008 - just short of two years after my gamma knife radio surgery on february 12 2006 - the official END. it sounds so long. it was so long. i missed out on two years of my adult life. and yet, it feels as though everything happened in the blink of an eye - it was a movie that i watched about another person's life ...
maybe this day is not making a big impact on me because afterwards, on wednesday - nothing much will have changed. i will still be jobless, i will still need to borrow money from my dad, i will still spend most of the day sitting at home reading or seeing friends. the neverending holiday. am i bored? am i uninspired? i don't know. i must be. motivation? what is motivation? no, that is not really true. i have been doing some research on teaching diplomas that i could study while overseas, i plan to start running and i still have things to organise for taiwan.
no, everything is good. b has decided to meet me in taiwan in march next year. i am enjoying spending time in cape town with friends - not so desperate to go back to work anymore. ha ha ha! life continues ....
Thursday, 6 November 2008
Ammendments
WOW! 2 consecutive posts! that hasn't happened in a long long time. must be something important! hmmm ... maybe, maybe not. i just felt like i had some stuff to write down in my 'diary'. first off: i have my ticket to taiwan! HIP HIP HOORAY! now that i have the ticket i am jumping outta my skin to get back there. i have been checking out available jobs and apartments and getting more and more excited. freedom! independence! travel! i can't wait! so much for my momentary doubts about whether or not i should be going. clearly my heart is already in taiwan.
my angiography date has also changed. i was booked for november 18, but my mom discovered that medical aid will not pay for it unless i have it after november. so now i must go in december. god, i am so sick of all these petty rules that medical aid has. you pay them every month and then you basically have to hold a gun to their head before they will actually help you. they just want your money. argh! it will be great to be back in the land of government assisted health care soon. after what has happened to me i am always conscious of all aspects of my physical and mental health and i pay a lot of attention to doctor's bills and medical aid. i believe ALL countries should have government assisted health care. it is essential!
and speaking of mental health. the other exciting thing is that i have decided to start weaning myself off the cipramil. i am sick of being wrapped in the cotton wool of an anti-depressant. i no longer need it as far as i'm concerned. i know how to make a weaning schedule and i know that i am the best judge of what my mind and body are capable of dealing with. after having dealt with the clonazepam withdrawals, i realise that no doctor can tell me how to do it, only my body can tell me. hopefully this won't take almost a year to come off though! i think i should be ok as long as i take it slowly. it's not as if i was given it because i REALLY needed it. anyway, i took 30mg today instead of 40mg and will do that for a week and see how it goes.
i'm feeling pretty good today - even though it is yucky and cloudy. i will be doing yoga tonight and then will be off to have dinner with a friend. i'm still bothered by not seeing B enough, but i know it is not his fault. i mean, i don't even know for sure if he is going to end up coming to taiwan, but if he does then we have plenty of time to get closer. this time i won't rush into anything - for a change!
my angiography date has also changed. i was booked for november 18, but my mom discovered that medical aid will not pay for it unless i have it after november. so now i must go in december. god, i am so sick of all these petty rules that medical aid has. you pay them every month and then you basically have to hold a gun to their head before they will actually help you. they just want your money. argh! it will be great to be back in the land of government assisted health care soon. after what has happened to me i am always conscious of all aspects of my physical and mental health and i pay a lot of attention to doctor's bills and medical aid. i believe ALL countries should have government assisted health care. it is essential!
and speaking of mental health. the other exciting thing is that i have decided to start weaning myself off the cipramil. i am sick of being wrapped in the cotton wool of an anti-depressant. i no longer need it as far as i'm concerned. i know how to make a weaning schedule and i know that i am the best judge of what my mind and body are capable of dealing with. after having dealt with the clonazepam withdrawals, i realise that no doctor can tell me how to do it, only my body can tell me. hopefully this won't take almost a year to come off though! i think i should be ok as long as i take it slowly. it's not as if i was given it because i REALLY needed it. anyway, i took 30mg today instead of 40mg and will do that for a week and see how it goes.
i'm feeling pretty good today - even though it is yucky and cloudy. i will be doing yoga tonight and then will be off to have dinner with a friend. i'm still bothered by not seeing B enough, but i know it is not his fault. i mean, i don't even know for sure if he is going to end up coming to taiwan, but if he does then we have plenty of time to get closer. this time i won't rush into anything - for a change!
Wednesday, 5 November 2008
Discombobulation
Friday, October 31: halloween 2008 and exactly 2 years since i had my first vertigo attack. 2 years since i started getting sick ... and a few weeks after those 2 years i will be getting my final angiography - well, i hope. i'm still trying to confirm the date with the hospital. and just before that date, i am off to my first trance party in years. it is going to be great. music, dancing, camping, crazy people, nature, fresh air. i can't wait!
oh and i came off the clonazepam without any problem. HALLE-FUCKIN'-LUJAH! i'm still having the vivid dreams and night sweats, but that is all. now i need to come off the cipramil (anti-depressant). i am a bit worried about that. i have always had a negative streak in me and i am not the most emotionally stable person out there - which is why colin is such a bad match for me (even though we loved/love each other very much) and why B is such a good match for me - and i fear i may become very depressed coming off these happy pills. i can't even remember what i was like without them. guessing, i think my emotions were more intense and i was more melancholy. although i still get sad now and i am in psychological turmoil (as usual). and what is wrong this time? well, i haven't been doing much recently. i know i keep going on about how i need to be more active with my creative projects, but i seem to just get worse and worse. i think it is cos i get bored easily. in the last few weeks i haven't even been reading. i have just been watching anime all day and night. don't get me wrong, i have been enjoying it, but i know it is not healthy. i am slowly coming to the end of the anime that i have though so now i have started doing some other things with my time. i am reading again and yesterday i went to the beach.
i also want to start painting again. i might even be able to sell a painting! seriously! a woman in england saw my paintings on facebook and wants to commission me to do one for her. however, she wanted to commission it for next year and i have told her that i won't have the time as i will be in taiwan in february (plans are going well for that too!). i am still waiting to hear back from her. but what an amazing opportunity! i am very flattered and excited!
speaking of opportunity. i got a phone call yesterday from a publishing company in cape town. they wanted to interview me for a job as a project manager. i don't even remember applying for this job, so it musta been a good few months ago. i got such a surprise! my ticket to taiwan is pretty much bought and paid for, i had no intention of getting a serious, long term job in cape town! so i said i was leaving the country soon - BUT now i am wondering if that was the right decision. oh it is terrible to second guess yourself! part of me is saying that i should cut the crap: settle down, get a 'real' job, find a boyfriend my own age, get married etc etc ... BUT is that what i really want? I DON'T KNOW! i don't think so .... well, i know i definitely don't feel 'grown up'. i'm not ready for children - maybe i'll never be. i want to travel (again, i get bored easily so travelling is perfect for me). so, i guess it is society that is telling me all these things. and, yeah ... i REALLY shouldn't listen.
this confusion about what i really want, or what i should really want is present in all parts of my life right now. i am questioning all my decisions and waging war against my poor, battered little psyche.
weight: i haven't been particularly obsessive about weight in a long time. i am pretty slim now, but recently i have been craving food, or rather, craving eating. i find myself thinking about eating food a lot. maybe it is a comfort thing - or again, a boredom thing. i don't know, but right now i am trying to stop myself from eating a whole slab of chocolate in one day, but sometimes i do it anyway.
work: there is a guilt that i am carrying around, maybe i should be getting a job right now. i should be spending my time productively.
love: a while ago the question of whether or not B is coming to taiwan came up again. he said "i don't know". after that i decided that he wasn't coming and i started to distance myself from him emotionally. last week he told me he is coming with, but we haven't spoken about it further. now i don't know if i even want him to come with! i have been thinking about colin a lot lately and i know i am not completely over everything that happened between us. so can i really put myself fully into another relationship right now? i am not even off all the mood changing drugs yet. i'm not sure if i even know the real me right now! the other distance between B and i at the moment is physical distance. he is very busy and i am not. i hardly ever see him. i am used to spending a lot of time with my boyfriend. i LIKE to spend a lot of time with the person i love. as much time as possible really. that's just me. i want us to be able to share (almost) everything.
life: i am 28. almost 30! what have i done with my life? what have i achieved? where am i going? i find the answers to those questions are "not a helluva lot" OR "i don't know!". how am i living my life right now? am i living it to the fullest? definitely not! i sit around my mom's house reading and watching cartoons. i see friends once in a while. i see my boyfriend once in a while. i'm not achieving anything. maybe i am being too hard on myself. i had brain surgery and i am still coming off certain drugs. i lost two years of my life. two years where i couldn't do a helluva lot. my life would be in a very different place if i had been perfectly healthy. i would probably still be smoking - YUCK!
NO, i am proud of myself! i got an honours degree from university, i ran a half marathon, i went overseas by myself, i learnt chinese, i survived brain surgery and wrote a blog about it, i have my name in a book as the proofreader (the one that i was working on - they sent me a copy), i have almost sold a painting, i am an excellent teacher, i can cook etc etc.
i feel i may be having my quarter life crisis NOW, at 28. but i gotta remember that i am sitting in my mom's house, jobless at 28, with a slew of failed relationships behind me not because i am a loser, but because that's life ... a friend said to me the other day, "give yourself a break, sue! you had brain surgery after all!" - i know she's right.
i am always so strict with myself, i need to lighten up so that i can enjoy the last of my lying around, doing nothing, stress-free holiday. i can't waste this time by feeling guilty. i will make up for this laziness next year.
as elizabeth gilbert does in eat pray love - i am in "pursuit of pleasure". hedonism is still in, right? :-)
oh and i came off the clonazepam without any problem. HALLE-FUCKIN'-LUJAH! i'm still having the vivid dreams and night sweats, but that is all. now i need to come off the cipramil (anti-depressant). i am a bit worried about that. i have always had a negative streak in me and i am not the most emotionally stable person out there - which is why colin is such a bad match for me (even though we loved/love each other very much) and why B is such a good match for me - and i fear i may become very depressed coming off these happy pills. i can't even remember what i was like without them. guessing, i think my emotions were more intense and i was more melancholy. although i still get sad now and i am in psychological turmoil (as usual). and what is wrong this time? well, i haven't been doing much recently. i know i keep going on about how i need to be more active with my creative projects, but i seem to just get worse and worse. i think it is cos i get bored easily. in the last few weeks i haven't even been reading. i have just been watching anime all day and night. don't get me wrong, i have been enjoying it, but i know it is not healthy. i am slowly coming to the end of the anime that i have though so now i have started doing some other things with my time. i am reading again and yesterday i went to the beach.
i also want to start painting again. i might even be able to sell a painting! seriously! a woman in england saw my paintings on facebook and wants to commission me to do one for her. however, she wanted to commission it for next year and i have told her that i won't have the time as i will be in taiwan in february (plans are going well for that too!). i am still waiting to hear back from her. but what an amazing opportunity! i am very flattered and excited!
speaking of opportunity. i got a phone call yesterday from a publishing company in cape town. they wanted to interview me for a job as a project manager. i don't even remember applying for this job, so it musta been a good few months ago. i got such a surprise! my ticket to taiwan is pretty much bought and paid for, i had no intention of getting a serious, long term job in cape town! so i said i was leaving the country soon - BUT now i am wondering if that was the right decision. oh it is terrible to second guess yourself! part of me is saying that i should cut the crap: settle down, get a 'real' job, find a boyfriend my own age, get married etc etc ... BUT is that what i really want? I DON'T KNOW! i don't think so .... well, i know i definitely don't feel 'grown up'. i'm not ready for children - maybe i'll never be. i want to travel (again, i get bored easily so travelling is perfect for me). so, i guess it is society that is telling me all these things. and, yeah ... i REALLY shouldn't listen.
this confusion about what i really want, or what i should really want is present in all parts of my life right now. i am questioning all my decisions and waging war against my poor, battered little psyche.
weight: i haven't been particularly obsessive about weight in a long time. i am pretty slim now, but recently i have been craving food, or rather, craving eating. i find myself thinking about eating food a lot. maybe it is a comfort thing - or again, a boredom thing. i don't know, but right now i am trying to stop myself from eating a whole slab of chocolate in one day, but sometimes i do it anyway.
work: there is a guilt that i am carrying around, maybe i should be getting a job right now. i should be spending my time productively.
love: a while ago the question of whether or not B is coming to taiwan came up again. he said "i don't know". after that i decided that he wasn't coming and i started to distance myself from him emotionally. last week he told me he is coming with, but we haven't spoken about it further. now i don't know if i even want him to come with! i have been thinking about colin a lot lately and i know i am not completely over everything that happened between us. so can i really put myself fully into another relationship right now? i am not even off all the mood changing drugs yet. i'm not sure if i even know the real me right now! the other distance between B and i at the moment is physical distance. he is very busy and i am not. i hardly ever see him. i am used to spending a lot of time with my boyfriend. i LIKE to spend a lot of time with the person i love. as much time as possible really. that's just me. i want us to be able to share (almost) everything.
life: i am 28. almost 30! what have i done with my life? what have i achieved? where am i going? i find the answers to those questions are "not a helluva lot" OR "i don't know!". how am i living my life right now? am i living it to the fullest? definitely not! i sit around my mom's house reading and watching cartoons. i see friends once in a while. i see my boyfriend once in a while. i'm not achieving anything. maybe i am being too hard on myself. i had brain surgery and i am still coming off certain drugs. i lost two years of my life. two years where i couldn't do a helluva lot. my life would be in a very different place if i had been perfectly healthy. i would probably still be smoking - YUCK!
NO, i am proud of myself! i got an honours degree from university, i ran a half marathon, i went overseas by myself, i learnt chinese, i survived brain surgery and wrote a blog about it, i have my name in a book as the proofreader (the one that i was working on - they sent me a copy), i have almost sold a painting, i am an excellent teacher, i can cook etc etc.
i feel i may be having my quarter life crisis NOW, at 28. but i gotta remember that i am sitting in my mom's house, jobless at 28, with a slew of failed relationships behind me not because i am a loser, but because that's life ... a friend said to me the other day, "give yourself a break, sue! you had brain surgery after all!" - i know she's right.
i am always so strict with myself, i need to lighten up so that i can enjoy the last of my lying around, doing nothing, stress-free holiday. i can't waste this time by feeling guilty. i will make up for this laziness next year.
as elizabeth gilbert does in eat pray love - i am in "pursuit of pleasure". hedonism is still in, right? :-)
Wednesday, 8 October 2008
Anniversary
today is the celebration of another anniversary. it has been 1 year and 9 months since the avm on my brain stem was found and since i quit smoking. oddly enough i have been finding my cravings for a cigarette getting stronger recently. i think it might be because B smokes and then when i am drinking and i see him smoke all the time it makes me want one. i always used to love having a ciggie and a glass of red wine. but i will not do it. it has been almost 2 years and it would be stupid, not to mention expensive! to start now.
but the really big news which i think is appropriate to share on this anniversary is that, DUM DUM DUM i have scheduled my final angiography. HOORAY! i phoned my neurosurgeon and it was as easy as making a lunch date (somehow i thought i would have to convince him). i was so overwhelmed with emotion when it was done. i felt relief, joy, fear? i was crying with happiness and just bowled over by my intense reaction. and when is the fateful day? tuesday, november 18. i will be going into the UCT hospital at 8 am. i will be put under general anaesthetic - which is great since the last 2 times i was under local and it was really unpleasant to be awake during the procedure. and i will leave the hospital a few hours later. none of this lying on my back for hours on end with a sandbag on my leg etc etc. i dunno why they do things so differently in south africa, but it definitely makes my life easier.
now i have just over a month to get rid of the clonazepam. i stopped taking it on saturday, october 4 and have been waiting for the withdrawal symptoms to hit me ever since. i am worried about them and this makes things worse of course, but at least i am prepared and i have explained things to B (the poor guy!). i have finished with the work that i was doing and i am not going to try and find more work until i am over this clonazepam addiction cos i know that i will not be able to function if the withdrawals get really bad. BUT there is always the hope that they wont get bad. the vivid dreams and night sweats seem to have stopped in the last week. maybe this is a good sign. fingers crossed!
but the really big news which i think is appropriate to share on this anniversary is that, DUM DUM DUM i have scheduled my final angiography. HOORAY! i phoned my neurosurgeon and it was as easy as making a lunch date (somehow i thought i would have to convince him). i was so overwhelmed with emotion when it was done. i felt relief, joy, fear? i was crying with happiness and just bowled over by my intense reaction. and when is the fateful day? tuesday, november 18. i will be going into the UCT hospital at 8 am. i will be put under general anaesthetic - which is great since the last 2 times i was under local and it was really unpleasant to be awake during the procedure. and i will leave the hospital a few hours later. none of this lying on my back for hours on end with a sandbag on my leg etc etc. i dunno why they do things so differently in south africa, but it definitely makes my life easier.
now i have just over a month to get rid of the clonazepam. i stopped taking it on saturday, october 4 and have been waiting for the withdrawal symptoms to hit me ever since. i am worried about them and this makes things worse of course, but at least i am prepared and i have explained things to B (the poor guy!). i have finished with the work that i was doing and i am not going to try and find more work until i am over this clonazepam addiction cos i know that i will not be able to function if the withdrawals get really bad. BUT there is always the hope that they wont get bad. the vivid dreams and night sweats seem to have stopped in the last week. maybe this is a good sign. fingers crossed!
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