Ravings of the Housebound.

Finally

2009-01-04T10:01:00.003+02:00

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! :-)

Relief

2008-12-01T22:30:00.003+02:00

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 become 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 ....

Ammendments

2008-11-06T11:45:00.006+02:00

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!

Discombobulation

2008-11-05T11:33:00.005+02:00

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? :-)

Anniversary

2008-10-08T10:02:00.003+02:00

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!

Distracted

2008-10-01T11:50:00.008+02:00

i know i didn't make good on my promise to write before i went on holiday. and i know that i have taken even longer than that just to actually sit in front of my computer and type words onto a page. my excuse? well, i HAVE been busy and distracted. i have caused distractions for myself sometimes. i'm not sure why. to try and keep myself busy and having fun was the main reason i think. so what have i been doing to have fun?

Hagga Hagga farm
i went to the eastern cape. i stayed two nights (monday, september 15 - wednesday, september 17) on a friend's beautiful farm in hagga hagga. the farm has rolling hills and is on the coast. there were lots of baby animals cos it is 'spring' (although you cant tell from the revolting weather in cape town!) and we drove around the farm on a landrover and it was lovely to get out into the country side. then i was in grahamstown from wednesday, 17 september to sunday, 21 september. i stayed with friends of mine who i know from taiwan. it was fantastic to see them again and i also managed to catch up with a lot of other old friends and especially important was an ex-boyfriend of mine - my first serious boyfriend. we still care a lot about each other and he is now having a baby and very happy. the only bad news from the trip was one person that i know who has become addicted to crack and seems to have lost his mind. i saw him at a bar and he was trying to talk to me, but i couldn't hold a conversation with him. it was very sad and disturbing to see how far us humans can fall. it makes one appreciate one's own life a lot more.

Pearly Beach flower
i was back home on monday, 22 september and B and i had a happy reunion that night. on wednesday, 24 september i had a family lunch complete with B, sister and her boyfriend as well as my cousin who is visiting from england who is the same age as B. we had a great lunch and went out afterwards (well, me, B and my cousin went out ;-) and got horribly drunk. B and i ended up having a drunken argument, but laughed about it the next day. my cousin wanted to hire a car and go down to pearly beach (where my family has a holiday house) for the weekend so it was arranged that i should go with. B came through for the friday night, which was lovely and then my cousin and i drove back to cape town on monday 29 september.

so yes, things have been pretty busy and i have been having fun and spending lots of money and it doesn't stop there as i am planning to go to a music festival this weekend with friends, my cousin and B - more money to be spent and fun to be had! woo hoo!

BUT in amongst all this fun, there has been angst - of course! there has to be angst! lets start with the clonazepam. still a fucking thorn in my side! i was still taking 0.5 mg a day when i left for the eastern cape. i didn't want to be struggling with withdrawal symptoms while on holiday. so i stopped taking the clonazepam on tuesday, 23 september after i got back. by friday, 26 september i was a mess. now, i have been having some withdrawal symptoms - like vivid dreams and night sweats. this got worse on thursday night. i had a really bad night and woke up on friday morning feeling very shaky and panicky. i tried to calm down as i got ready to go to pearly beach with my cousin, but i was just getting worse. i know that this is how it starts and then things just get worse and i start freaking out. i couldn't do that while away with my cousin so ... i gave in and went back onto 0.5 mg a day. i am still taking that, but plan to stop completely after the music festival this weekend (Rocking the Daisies). but god am i SCARED. how am i going to handle these withdrawals? i can't keep running away from this. what is going to happen to me and B, what about me and my friends (many of whom i haven't seen in ages anyway!). i don't want to be a basket case! but i have to do it. FUCK!

this situation has been worrying me. the other things that have been getting to me are firstly the usual - frustration at waiting for my life to start, wanting to go back to taiwan and live as an adult again, not having a job/car or even wanting to live in cape town, feeling trapped and dependent on others. it all just gets overwhelming eventually. add to this that my freelancing job has come to an end so i have no source of income, my medical aid has run out, i can't get hold of my neurosurgeon to try and schedule my final angiography etc etc and you just have a list of things that are hanging over my head ... oh and i have not been eating properly or following decent sleeping patterns. i need structure in my life and i am craving having a job again (although i know that wont last long ;-). when i spend time with B we go to bed late and get up late and i actually hate doing that. i need to have routine, exercise and a healthy diet in my life. i am trying to start that again.

and finally, i have been feeling very irritable lately - especially with B. i don't know why. maybe it is just because he is busy with life ... job etc and i seem to be sinking let alone moving forward. i find myself dreaming of taiwan more and more, but i know that i have a lot to be grateful for. cape town is beautiful and i have been having a great time here. i should enjoy the holiday while it lasts and enjoy being in my home country while it lasts. maybe when the sun starts to shine more then i will perk up. until then i am trying to get more exercise, and just get my life in order. i guess i have been running around doing lotsa things and haven't felt like i have things under control. now is the time to stop being distracted and start getting sorted.

PS. the course that i went on was great - i didn't struggle too much with the long days and i learnt a lot about myself and life - although i tend to forget these things and then fall into the same old traps again, but it is a work in progress. now i am doing a seminar course on success for the next 3 months every wednesday evening. i am going to a session this evening. i feel lazy about it when i think about going, but it is interesting and keeps me busy and productive.

PPS. thanks to the course i am no longer angry with my sister or colin and have been in touch with both of them. not that i will ever be good friends with them but at least i feel that there are no loose ends or negative feelings anymore.

Anniversary

2008-09-12T11:15:00.003+02:00

today is the day that i mark one year and 7 months since my gamma knife radio surgery. i also have not smoked a cigarette in one year and 8 months - although i still get cravings! aaah! physically i am recovering very well. i went for a lovely long walk in the forest yesterday and am planning to start running again soon. i am just waiting for the horrendous weather in cape town to clear up (although today is nice and sunny ;-). things are going well (except that i am still struggling with the clonazepam - i am now on 0.5 mg a day) and i know i owe you a decent post, but i am pretty busy at the moment (which is fanatastic for me). i have a big editing project to complete before i leave for grahamstown on sunday. i will try to write a more decent post before i leave.

Backtrack

2008-08-25T17:59:00.004+02:00

Table Mountain

well, i did what i planned to do and i realised that i shouldn't be beating myself up for not being able to deal with the withdrawals. after being back on 1 mg clonazepam and going up to 40 mg cipramil a day, i feel 100 times better! i feel close to normal! and feeling that makes me realise how psychotic i was feeling before when i was struggling with the withdrawals. literally, the next morning after i took my new dosage of meds i felt good. now it has been just over a week, the initial euphoria from the increase in cipramil has died down and i have gone down to 0.5 mg of clonazepam a day now. i think i will probably stay on this dosage for 2 weeks and then go down to zero. as my mom said to me, i am the only one who is putting pressure on myself or rushing myself. i still have to wait till december to hopefully get my final health check done anyway. i still have lotsa time to get rid of all the drugs in my system. i foresee problems coming off the cipramil too and plan to take that super slowly. although i think i can probably come down to 20 mg a day within a month.

anyway, enough about my medication. what else is happening in my life? well, i am still getting work doing editing and writing for the same publishing company, but i have also sent my CV in to a big publishing company in cape town to try and get a regular 9-5 job. i am getting really sick of being stuck in my house and i also need to start making more money if i wanna be able to afford my ticket back to taiwan early next year. i'll have to wait and see if i get a position though. i have decided that i am going on this life coaching course this weekend, although it is going to be very taxing. it runs from friday to sunday 8:30 am to 10:30 pm - EXHAUSTING! i am a little nervous as to how well i am going to handle such long days, but it will be a good indication as to whether i am ready for a steady job yet. if i am really struggling i can always pull out of the course, although i wouldn't want to do this. i think this could be a very valuable weekend for me.

what else am i planning? well, i am going to be visiting friends in another town, Grahamstown. i went to university in this town and have a lot of really good friends there that i can't wait to see. i will also be staying on a friend's farm for 2 nights which will be fantastic. i just need to book my bus tickets, 14 september - 21 september.

enough about the future, what about the past? firstly, on tuesday 19 august B (new boyfriend) and i went up Table Mountain on the cable car. it was a beautiful day and we had a great time walking on the top of the mountain. it was also the day before our 2 month anniversary. B pointed this out! he always remembers. how cute!

i also managed to see some friends on wednesday and thursday night and have started enjoying drinking red wine again. hooray for good south african red wine! i am definitely moving away from the crazy party vibe and into the chilled night with friends vibe. although i still love going out and dancing! so, on friday 22 august B and i went to watch a friend of mine's band launch their first CD. it was a great show and we had a good night, but then we had to wake up early the next morning to go to a friend's memorial service. this friend had died suddenly while overseas and B and i, plus some of my friends, are friends with the brother, and the father was my lecturer at university. this was a very tragic occasion and there wasn't a dry eye anywhere as the father, mother and brother each said beautiful, moving things. it was really hard watching the father and brother cry too.

saturday 23 august after the memorial, B and i went back to his parent's fabulous comfy house and slept. then we went out for dinner and to a friend's birthday party. then back to B's house for more sleeping and cuddling. sunday 24 august i spent time with B and his family and then we went for dinner and a movie. we spent the whole weekend together and it was lovely. i am back home now, having slept at home last night. we don't wanna start living in each others' pockets!

all in all, i have been happy the last week - i'm sure the cipramil has helped in this. i have been seeing friends, doing work and getting closer to B and just generally having a great time with him. one bad thing about the cipramil that i must mention is that it messes with my ability to orgasm. i still have a sex drive etc, but can't seem to reach end point. very frustrating, but a small price to pay for mental stability i suppose.

at the moment, that is the only thing that is worrying me, besides my nagging fear that coming off the clonazepam will drive me bonkers again. i have all these plans for the next month or so. i don't want to have to cancel them! i really need to move forward in my life - even if it is at a snail's pace. things have gotten so much better for me, and i want this trend to continue! GO SUE, GO!

Addict

2008-08-16T07:27:00.003+02:00

i have been going through absolute HELL the last two/three days as i think i have already explained. i had three different invites from different groups of friends to go out and be social last night and i had to turn down all of them because i was/am a basket case. but after taking the xanax i felt up to going to my grandparent's and uncle's house with my mom for dinner last night. some company and some red wine would surely make me feel better and help me sleep .... well, i had a great time and got home feeling good, but as soon as i got into bed i was wide awake, thoughts flashing through my mind, stressing me out. i think i got maximum 3 hours sleep last night. i woke up at 4:30 am, tried desperately to calm my mind but ended up freaking out and crying to myself, wishing i could wake my mom up for some comfort and company but i didn't. and the decision i have reached now - after no more sleep - is that i can't do this. i can't deal with these withdrawal symptoms. the mere thought of having to endure one more morning like yesterday morning makes me want to slit my wrists. i'm sure i sound melodramatic, but if you could feel the emotional and mental screaming that is going on inside my head, the feeling that i am about to fall into a black abyss of torment and madness, hopefully you would understand. no one should have to experience this, especially when it is an addiction perpetrated by a doctor! if i had had ANY idea that i was going to have to spend 8 months + (january - august) and take an anti-depressant to get myself off the clonazepam and then still be suffering intense depression and anxiety/fear i would have thrown it back in the doctor's face.

piracetam, baclofen, phenytoin - i had no trouble coming off any of those meds and to think that one substance, 4 mg a day for 1 year + would have me down on my knees feeling as helpless and scared as a baby. ridiculous! unbelievable, but it's true! i don't know what it is in my mental and emotional make up that makes me particularly weak against clonazepam, but it is something that i have to accept. so, i have reached a decision about how to continue.

i am going to take more of the cipramil (anti-depressant), increasing to 40 mg a day - the highest effective dose - and this alone upsets me. i have never been on an anti-depressant and hate the idea of the bloody things and now i have to double up on my current dose?! who am i? what is happening to me?

i am also going to go back onto 1 mg clonazepam a day. i feel ashamed just writing that down, but i can't 'tough it out'. the cipramil will give me problems sleeping for at least a week or two and i already have insomnia. i would end up going mad or taking a xanax every night to try and sleep (i already wanted to take another one this morning to make me feel better) and the xanax is an even more addictive benzodiazepine than the clonazepam! i'd rather go back onto the clonazepam and throw away my xanax. once i feel i have stabilised a bit then i will slowly wean myself off the last 1 mg of clonazepam. i feel like a coward deciding this, but i know that i can't continue to feel as horrible as i do for any longer. i am already exhausted from trying to calm myself down, trying to comfort myself. maybe it is the stress of all the shit that has happened to me over the last 2 years but i just can't take anymore suffering. i have no reserves of power left. it is not fair to ask me to do this too! i have been through enough without adding a mental breakdown to the list! i was feeling so desperate in the early hours of this morning that i actually considered the option of putting myself in a clinic! WTF?!

already my social life will be put on hold. i don't even know if i will go on this course at the end of the month now cos i don't think i am mentally strong enough to face all my demons. i really dont want to add the loss of my new boyfriend to that list too! there is no way that i could ask him to deal with me being as hysterical as i have been. it would be completely unfair to him. i have already dragged one boyfriend through my medical dramas. the new boyfriend sent me an sms last night and i could barely think of a happy way to respond. i don't want to be socially excluded by my medical condition again! that more than anything will just serve to deepen my depression and hysteria.

anyway, this is how i have reasoned things to myself. god, i hope this works.

Wishful

2008-08-15T15:05:00.002+02:00

fingers crossed and all my prayers to every god that these withdrawals will not last long! my mom (who is a nurse) says one week. my shrink says one month. literature on the internet says months - years. oh PLEASE let it be one week! i thought i could think myself outta this one, that i just needed to exercise some self-control but this is chemical, way beyond my power to deal with.

how i HATE the stupid bloody clonazepam! ARGH!

Inside

2008-08-15T14:18:00.002+02:00

so here i am. a beautiful, talented, interesting, intelligent, fun, caring women. i am the strongest physically that i've been in over two years. i haven't had any convulsions for months and months. i was finally getting a taste for being normal and it was amazing. i have wonderful friends and a lovely new boyfriend. i can drive around and go for walks in the forest. i can dance all night and have sex. and what am i doing now?

i am sitting in my house, shaking and terrified. unable to do anything. i can't go and buy bread, i can't go out and see my friends tonight, i can't even wash my hair. all i can do is sit and stare at the floor crying uncontrollably. i feel so horrible that it depresses me. two weeks ago i was flying high and now i have terrible insomnia and when i do sleep i have vivid nightmares, which give me night sweats. nothing is real. my own house is a menacing, terrifying place, but the outside world is even more treacherous. other people - god save me from dealing with other people! better to stay inside, but then i am all alone and inside my own head which is the worst place of all. everything is stressful, everything is worrying, everything is scary. i can barely type my hands are shaking so much from horror. i catch a glimpse of my face in the mirror, distorted into a rictus of terror, red and wet, tears streaming. nothing feels real, nothing feels safe, nothing feels normal. am i going crazy? (oh god please, i dont want to go crazy)

technically i'm not going crazy, but i'm as close to it as i ever wanna come. it is clonazepam withdrawals. they have hit me incredibly hard the last few days with no sign of letting up. i have been trying not to medicate myself with xanax as that is the same class of drug as clonazepam, but is actually more addictive. but eventually i have to or risk really going crazy. one body, one mind cannot handle this strain. especially not all alone. yesterday i went to see my shrink. up until a few days ago i had been supremely confident that i was off the clonazepam and was doing well. i spent the whole of yesterday morning trying to stop myself from freaking out, from trembling uncontrollably, from wailing and screaming, but eventually i had to give in and take a xanax. no way was i going to walk into the shrink's office with wide terror-filled eyes and a tear stained face, he woulda jumped at all sorts of ridiculous diagnoses.

i managed to make the walk to his office but not without jumping at every loud sound along the way. talking to him, i told him that i had recently been struggling with withdrawals (in retrospect the signs were there for a long time before this, but then i thought it was just me being a 'worrier' - no wonder i had a fight with him (new boyfriend) on saturday!) he suggested that i take more of the anti-depressant that i am on - which i will then also have to wean myself off of! ARGH! - and he prescribed a different drug to take if things were really bad, something to replace the xanax with. i felt better, maybe things aren't so bad ...

i didn't sleep very well last night, but at least i didn't wake up with any jolts of terror. this morning things, thoughts, worries about the past and the future were running around inside my head until my body was trembling and i was crying and hyperventilating. refusing to take a xanax, wanting to just get through this on my own i tried to do stuff this morning. ah ha! i thought, i finally have myself under control. i am not feeling good, but at least i'm not crying and panicking hysterically. but it started again. the feeling of unreality, terror, which then leads to depression. i was on the floor bawling and realised that if i didn't relent and take another xanax i might truly lose my mind - i honestly felt like i was going to have a complete melt down.

needless to say, i feel better now, after the xanax. i went for a walk and am feeling calmer. i still cant face going out tonight, or anytime this weekend probably, but at least i can function without getting so tense that i wanna throw up. and tomorrow i will be taking more of that anti-depressant because i am not superwoman and i cant do this by myself. i shouldn't have to suffer anymore. fuck, i hope it works. if it doesn't i don't know what i'll do.

but now, it looks like i will have to tell him (new boyf) something. he knows i had brain surgery etc, but i didn't bother to tell him in detail about my meds cos i really thought that i was on top of the clonazepam (fucking benzodiazepines! fucking doctor who gave me the bloody drug! it has given me a host of mental and emotional issues that i never had before! i hate it!). now i have to tell him that i am losing my mind right now and don't know when i will be better. i feel so bad for coming into his life and dropping all this shit onto his lap and knowing him he will be wonderfully understanding and wanna come and look after me. that just makes it worse. we have been together for 2 months - i refuse to involve him in all my medical and psychological dramas. so, what will i say? i dunno, the truth. i can handle spending time with him i'm sure. but i'm not up to going out with big groups of people and partying. unfortunately that is what he enjoys. he is not in town at the moment so i will wait until he comes back. or until he calls me, whichever comes first.

goddamn! so much for being normal and happy. HA! how could i think it was gonna last? moron!

Reality

2008-08-14T10:11:00.002+02:00

wow ... dunno why i am feeling so miserable when really things are going well. physically i am getting better, i am off my meds, i have lovely friends and a lovely new boyfriend. it has to be the clonazepam withdrawal. i have just fallen into a slump. i will get out of it. i have gotten outta worse before.

Doubt

2008-08-13T20:51:00.004+02:00

New Beginning?

self-doubt, doubt of others, doubt about the future, fear of the future, nerves, shaking, worrying, panic. i have been driving myself crazy with all this and more since last i wrote. some of these feelings plus the physical shaking and trembling is thanks to clonazepam withdrawals. i am finally completely off the horrid drug, but am still experiencing panic attacks, nervousness, trouble sleeping ... but it has definitely been easier coming off the clonazepam with the help of the cipramil (and some xanax ;-). i'm actually going to see my psychiatrist tomorrow. i need to start coming off the cipramil in the next few months. i wonder what he will try and diagnose me with this time?

i admit that i may suffer from some form of mild depression, but i would prefer to try and tackle it myself rather than rely on drugs - so it's goodbye cipramil! in the spirit of trying to sort myself out i am trying to mentally prepare myself for the self-growth course i will be attending at the end of this month, which includes cutting down on the drinking and partying! hopefully my nerves will have calmed down by then.

last week i was suffering from weird panic attacks during my sleep where i would have a nightmare and then wake up terrified and sweating. i had to call for my mom and take a xanax. i am naturally a bit of a worrier and sitting alone at home all the time doesnt help - although i have also imposed this on myself a bit as i have recently been feeling antisocial and lazy. also a bit nervous (clonazepam again!) about seeing people. this has been made a bit more difficult because my new boyfriend is a very friendly, fun-loving, social person and has been inviting me to meet all his friends and party (when all i really wanna do is cuddle up to him and stay at home) with them often. sometimes i say no, but i cant say no all the time. i have just become a bit too neurotic lately i think. a bit stressed.

what do i have to stress about?! i don't have stressful job, i am staying with my mom and am pretty well-protected from the real world right now. i think maybe i have become so used to being sick that the prospect of being 'normal' again - of having expectations and pressures put on me - scares me. but at the same time i also long for my freedom, my independence, my life and taiwan has begun to symbolise that for me. taiwan is my chance at breaking free again - i feel trapped and hopeless in south africa - but then, what if i feel like that in taiwan too? you cant run away from yourself.

i seem to never be content with what i have. first i just wanted to get better and now i want my life to be perfect. first i just wanted to kiss boys and party and now i have a boyfriend who i am falling for and i wanna be serious about life. i suppose it is all about trying to strike a balance between everything and that means doing NOT thinking. i have been doing way too much thinking, stressing, worrying, etc etc recently to the point where i ended up having my first drunken fight with my new boyfriend on saturday, 9 august. what was the fight about? what else can one really worry about except - THE FUTURE! dum dum dum! i was demanding a serious commitment, something that i know he cant give right now. it was all sorted out in the end, but not before there had been drama ... i bring this drama into my life. i know that. now i must figure out how to control it, how to control my neuroses.

when i was still sick there was a twisted simplicity to my life (although things with colin were incredibly unstable). nothing was expected of me, but to get better. things are starting to complicate again. this new boy is a BIG complication, but i can't avoid it because i think i am falling for him (although i can also nitpick lots of reasons why i shouldn't be with him. sigh) and i'm not sure how strongly he feels about me. i know he is an incredibly emotional, sensitive person, and he protects himself by being calm and trying to stay aloof. i protect myself by causing fights and drama ... testing the person's love maybe ... demanding more attention maybe. i don't know. but i guess at least i am thinking about it. although sometimes i wonder whether you can get yourself into more trouble by thinking and pondering too hard - that is why so many people drink so much. or take drugs. to deaden these lonely, corrosive thoughts.

one would think that by now i, of all people, would have learnt that you cant control the future and so it is silly to worry about it. i think i did learn this and many other lessons, but as i return to 'normal' i am forgetting to apply them practically to my life. i am becoming lazy again. no painting, no photography, less writing, no beading, no dancing, no creativity. more TV and more reading. not that reading is bad, but there must be other things done during the day. activity vs passivity. well, i am writing for the first time in ages (a good sign?) - although this is more just diary writing than anything like storytelling, but it seems to help more when i get my feelings and thoughts onto this blog - things seems clearer somehow. as if all my imagined readers are helping me sort my head out. thanks guys! ;-)

Dreaming

2008-07-16T11:59:00.004+02:00

i am now down to taking 1 mg of clonazepam a day! AND it hasn't been too hard at all ... i had a bit of a speed wobble the last time i wrote, but since then i have been doing well without too many horrible withdrawal symptoms. i have been feeling a bit odd or edgy sometimes and my ears have been popping like crazy. i've had a few increased spasms but nothing hectic. the cipramil is fantastic! thank you to the psychiatrist! i have a few more weeks and i will be off the dreaded stuff for good. HOORAY! HOORAY! HOORAY! then i just have to worry about getting off the cipramil - what if i get depressed?

in fact, i haven't just been dealing with the withdrawals well, my body seems to be getting stronger! i am still seeing him - more about that later - and i have been having sex and partying with no problem ... although i have decided that i need to take things a bit easy on the drinking. i like feeling healthy and drinking achieves the opposite. plus i have been doing some ridiculous things that i am not proud of. at the moment i have bruised ribs, a cold and a cornucopia of other wounds such as a cut on my eyelid and burnt hair (from a candle - DONT ASK!) as well as a slightly guilty conscience. i have been having fun though ;-).

i also have a friend staying with me at the moment and i haven't spent nearly enough time with her. so i am chilling this week and having dinner with my friend and just trying to be gentler with my poor little body and my poor little brain. and this is also perhaps a security strategy for my heart.

yes, him. he's getting under my skin. he is 5 years younger than me and just lovely. i think i have sung his praises already. he is gentle, sensitive, self-aware, positive etc etc. everything that a woman could want. i can see myself falling for him, but i am trying to slow down because i know myself in love. i give everything to that person - maybe even in a self-destructive kinda way - and i am not ready for it yet. i have just regained my independence and i dont want to lose it. so the great thing about what we have now is that we are both very independent. we see each other maybe twice a week and we have fun. but i can feel that things are moving towards a deeper connection. it has been about 1 month and i know we are both feeling very attached to each other. feelings are growing and tingling inside me and it is exciting and terrifying at the same time. he is young - only 23 (not 24). he needs to find himself. hell. I need to find MYSELF!

i am going to be as chilled as i can about the whole thing but i wont lie. if things keep going the way they are ... i would LOVE for him to come to taiwan with me next year. we could live together and travel together and it would be great. but that is just a little, quiet dream for now. something im trying to ignore because i have a long way to go before i am healthy enough to make that kind of commitment and to go to taiwan. for now, waiting and seeing is as much fun ... ;-)

Anniversary

2008-07-12T10:00:00.002+02:00

So, it must be mentioned ... although i missed the first one. but today is an anniversary. it has been 1 year and 5 months since i had my gamma knife radio brain surgery. i am still coming off medication and i am not 100%, but i am so much better in many ways. hooray! haven't had a seizure in ages!!!

and i missed tuesday, 8 july which was another anniversary. it was my 1 year and 6 month anniversary of no-smoking and finding out about my AVM.

in so many weird and little ways i have slowly begun to appreciate what a gift this whole experience has been. how much it has changed me and my life for the better in the end. it has not been fun, it has certainly not been easy, but i think that i am coming out of it a more self-aware, a more self-confident, a more balanced person. that is not to say that i am a saint or that there is no room for improvement. far from it! maybe what i am trying to say is that all of THIS - that has happened to me and is on my blog - has made me aware of just how much room for improvement there is ... how much better a person i can be and will strive to be. but knowing full-well that i am already a good person.

the most important thing is that i will be doing it for ME.

Him

2008-07-03T01:00:00.003+02:00

there are so many little things that he says and does that touch my heart it scares me.

Twitching

2008-07-02T20:16:00.004+02:00

so, how's old sue doin' these days? hmmm ... good and bad, as is usually the case with life. i have given up on the book writing for the moment as well as the painting, beading etc. i feel pretty uninspired, unmotivated. what i can do is still work and read. i do a lot of reading, and walking. oh and i socialise quite a lot still too! i guess i am just really tired of entertaining myself at home alone all day although i do try and appreciate this holiday that i am having. but when it comes to seeing friends etc ... i am as happy as a pig in shit - the life of the party! and thereby hangs a tail.

on friday, june 20 i went to two friends' birthday party. they have been going out forever and they also happen to share the same birthday. so cute! i had a fantastic time at this party, got drunk, spoke shit to everyone, cemented new friendships and met more lovely people. as usual, i was still wanting to continue the party at about 4am when everyone else was ready to go home. but i found a partner in crime (although i dont remember exactly how it came about ;-). this partner in crime happened to be the younger brother of a guy i had gone to school with. how much younger? about 4 years ... anyway, we ended up driving around in his car looking for more booze. we were on the way to my house to pick up a bottle of wine and stopped at a park. it was the most beautiful morning. there was a full moon and mist swirling amongst the pine trees. magical! narnia! we kissed under the moonlight. wonderful!

anyway, we ended up back at his flat, drinking wine and talking and kissing and singing along to cat stevens until about 11am, saturday june 21. we passed out. woke up. had sex - yes, the first sex i have had since colin and i broke up. woo hoo! freedom! since then i spent the night with him on tuesday, june 24 (more and better sex ;-)and then we went to simonstown, a lovely coastal area of cape town, the next day for lunch. it was a beautiful, sunny winter's day. then i spent the whole of last weekend, friday june 27 - sunday, june 29 with him house sitting his parents' beautiful house. we surprised ourselves by getting drunk on the friday night and staying up all night talking and playing. then the saturday night we got movies and pizza. sigh. what a great weekend! and he even said so! he sent me an sms on monday, june 30 saying what a wonderful time he had had. we sms'ed back and forth a bit and ended with a "see you soon".

he is a lovely guy. sincere. honest. friendly. deep. fun. uninhibited. 24 years old. he isn't ready for the kind of serious relationship that i am ultimately looking for, but he is good for me now. no expectations. no pressure. no promises or lies that can be broken. no bullshit confessions of undying love. just a lotta fun. we have a lot in common and we get on really well. it's good for now.

BUT - there's always a but! now, i am feeling edgy about things - including him (i haven't heard from him in 2 days! big deal!). i think it is partly insecurity and the fact that i have far too much time to myself to sit and brood, but i have also realised tonight that it is also clonazepam withdrawals again. i started tapering my dosage almost 2 weeks ago. it takes at least a week before i feel any withdrawal effects. at the moment i am taking 2mg a day vs. my original 4mg. HOORAY! i've halved the dosage at least. BUT, this morning i woke up with my right bottom eyelid twitching. it has been twitching all day as i try and work, read, cook, watch TV etc. i have been feeling a tiny bit edgy, but i was admonishing myself for being nervous, impatient and insecure about this new boy i have found. during the day i have been having some minor muscle spasms, especially my neck, right arm and twitching of my right hand. things are seeming a little unreal - my brain is twitching, my body is twitching, my emotions are twitching (i had a little crying outburst earlier). i decided to look up eye twitching ... it is neurological in origin and can be a symptom of benzodiazepine withdrawal (follow the link - very NB). AH HA! the fucking clonazepam!

god how i hate it. if anybody EVER offers you a benzodiazepine - say NO!! the cipramil is definitely helping and for the rest of the symptoms - i am just gonna have to get used to twitching or learn how to stop it. as for the boy - he likes me and i like him. tomorrow i am going to send him a cute sms in chinese - he doesnt know the language but loves that i can speak it ;-). and this weekend? i probably wont see him as i have plans with friends ... i have thought of ending things - but why? i might as well continue to have some 'no-strings attached' fun. as long as i dont start twitching in front of him ;-).

Rebirth

2008-06-18T14:44:00.002+02:00

Some days are good. Some days are bad. Some days are even worse. There is no time limit for grief or recovery. Life continues and so you continue ... feel the pain ... don't deny the anger, the loss. Know that you will emerge triumphant when you are ready. And you will be better than you ever were before.

I am a pure and unadulterated miracle. I am courage, beauty, wisdom and strength. I am forgiveness and love.

Winter

2008-06-17T15:04:00.004+02:00

i write this post with a suitable amount of guilt and shame at how i have neglected my dear blog and my faithful readers ... thanks guys for all the support! i'm not sure why i haven't written for so long. i get bored quickly so maybe i just needed to take a break, and maybe i just felt like i kept going on and on about the same thing and that needed to stop. i have also been doing quite a bit of 'work with words' on my computer already, what with the proofreading, editing and copywriting i have been doing - ok! i admit! it is not a lot of work, but remember, i have been on a seriously extended holiday and am now a lazy bugger. no, ok, i was always a lazy bugger ;-). the other reason is that i tried to take some of this blog and write it as a book. i sent what i had done to a writer friend of mine and was horrified at how much more he expected from me. scary! yes, a novel and a blog are two very different beasts! (i think i'm the only one who didn't realise that).

so, at the moment i am hiding under my blankets reading books and blaming it on the winter weather. although i have managed to have a few adventures ... but first lets dispense with the admin. HOORAY for sunday, 8 june - my 1 year and 5 months AVM discovery, no-smoking anniversary. and my 1 year and 2 months writing this blog anniversary. HOORAY for thursday, 12 june which was my 1 year and 4 months gamma knife radio surgery anniversary. and how am i feeling? pretty damn good, thank you! i've been on the cipramil for almost a month now and the horrible side effects went away after about a week - thank god! and i must admit that i am feeling a little bit more stable emotionally. not unnaturally happy, but just more content although i still feel sad and depressed sometimes - of course! so in a few days time i will start coming off the clonazepam again. i'm going to try and speed up the process a little as i have nearly weaned myself off the piracetam and i am really feeling good. my birthday is on 1 august and then i have this self-discovery course that i am going on at the end of august and i would prefer to be off as much medication as possible by that time. but i know i mustn't rush things. but i haven't had a convulsion in over a month! WOW WOW WOW! and the only probs i still have are some spasms sometimes and that popping in my ears.

this physical recovery has made it possible for me to get up to all the mischief that i have been recently. he he he. so i'll start with thursday night, 29 may. my lovely friend who stayed with me for a month was moving out and a guy that i know through my sister (who i am still not speaking to - blah!) wanted to go out for drinks that night. this guy is SEXY, but i had no designs until he started flirting with me like crazy before we were to go out. the night in question we went out to a bar near my house. had a great time getting drunk, talking shit, dancing etc. he was to sleep at my house so he didn't have to drive home drunk so we ended up in my lounge kissing and fooling around, but i refused to have sex. i dont do one night stands. anyway, we slept in separate beds and he left with a kiss and a good bye the next morning. now he is very busy with work and will contact me when he has free time to go out again - bit of a dead end there ... but fun nevertheless.

since then i have been partying with friends and having a great time. then on friday, 6 june i went out on the town with some friends. got very drunk and when they wanted to leave i decided that i was going to stay. i went to a club by myself with no idea how i was going to get home, but i really didn't care (a bit stupid and dangerous ...). i had a great time talking to random people and dancing. i managed to get a lift home with this really nice guy who ended up sitting in my lounge listening to me ramble on drunkenly for ages. eventually he went home and we kissed as he left. he took my number, but again - no further interest has been shown. he was a lovely guy, but i think he believes i'm a bit crazy ... not too far off the mark. again, i'm not too bothered by it. i wanted to dance, party and kiss cute guys and that is what i am doing. most men cant handle someone as loud and opinionated as me ... i'm a bit threatening or something, i dunno ;-).

a fling would be nice, but i have never done the chasing and i dont feel like starting now. i'm pretty happy being single and fabulous so, i'm not looking for anything - it can find me. mmhmm. this last weekend was also full of great fun and dancing with new and old friends. i do feel like a bit of hypocrite since i seem to remember lecturing about how i wasn't going to be a big drinker/party girl anymore. i had grown out of that - blah blah blah. but i have realised that i will always have a wild side, but i have changed and dont think i will be drinking so ridiculously in the future. as a friend said to me: i am coming out of a long-term illness and a long-term relationship (which was also a kind of illness - eugh!) so it is completely natural that i wanna spread my wings and have some FUN. god knows i deserve it!

since i mentioned the long-term ill ... uh ... relationship i might as well give an update on colin although the whole topic and the man himself is really starting to bore me (and you too, i'm sure!) well, after feeling a bond with him like i said in my last post, i then had a very educational chat with one of his friends and did a lot of thinking. i realise now that just because he was present while the whole brain surgery torture was happening doesn't mean that he actually has any understanding of what happened. like this mutual friend of ours said: i moved 20 steps ahead of him in the last year and a half and i was already 10 steps ahead of him when we started. disgusted and angry i decided to cut him out of my life. we were to have lunch before he left to go overseas for a few months ... i cancelled that and proceeded to ignore him. 'out of sight, out of mind'.

now he is overseas, but has some new girlfriend waiting for him here in SA. alone in a foreign country, after sending me hate mail because i cancelled our lunch date, he suddenly decides to send me a nice email pleading that i not ignore him. i'm an important person in his life. please! actions speak louder than words and it is only because he is lonely and bored that he now sends me this message. anyway, i decided to respond - i need to get over my bitterness as it is hurting me more than him. and why am i still so bitter, when i'm not even sure i like the guy anymore? i think i am crying for a broken dream, broken promises that were never real. anyway, if he emails me again, i will respond. when he returns to SA in september will i see him? i dont know. i'm past caring at this point.

now it's all about ME, baby, ME! (and all my beautiful friends of course - some of whom i miss with all my heart) oh AND my fantastically crazy, funny family! i really am a lucky girl!

Reshuffle

2008-05-20T15:50:00.005+02:00

reshuffle ... reshuffle what? reshuffle my life, reshuffle my plans, reshuffle my feelings ... well, i'm being a bit dramatic, but i have a tendency towards high drama - as you might have noticed. what has really happened recently is a bit of a setback in one way ... maybe not, in another. oooh ... i'm being so 'mysterious'. lets start at the beginning.

my last post i was ranting and raving because i couldnt go out to a club. i was upset that i had had a convulsion when i have been doing so well and feeling so good. well, i ended up going out with some friends on friday, may 16 anyway. just not to a club. we went to a food and wine expo. it was great fun and i got pretty drunk tasting all the wines from different vineyards. it was then decided that we would go to a bar afterwards. i happened to bump into an old friend that i hadnt seen in years. my other friends left and i decided to stay and chat to my long-lost friend and his buddy. then my long-lost friend left and it was just me and his buddy. i was really drunk by then, but i do know that the guy i was talking to was a nice guy. the bar closed at 4am and i was walked home. then this guy asked me for a kiss!

this is what i have been going on about. this is what i have been dying to do. go out, party with friends, kiss a guy. but when it came down to the crunch i freaked out. i told him i couldnt and he went home. it hasnt been quite 2 months since colin broke up with me and as much as i thought i was ready to carry on, obviously my heart is not ready. i woke up on saturday, may 17 feeling really hungover and guilty. i actually started crying. i was freaked out by what had happened the night before. why? is it because i dont want to fall back into old, drunken behaviour patterns? (partly) is it maybe that i'm not ready for that much independence, that much reality? (probably) is it because i am experiencing clonazepam withdrawals that are making me edgy and paranoid? (definitely)

i ended up having a panic attack that afternoon. it was so bad that my whole body was shaking, i was bawling, TERRIFIED, paranoid ... i had been feeling jittery, paranoid, a bit depressed for the last two weeks but i was handling it! i was so determined that i could come off the clonazepam by myself. especially since things were going so well for me. i had a close-to-normal social life, which made me so happy.

now, all of a sudden, i was scared of everything, i was stressed about everything, i couldnt cope! i canceled two social engagements and spent the rest of the weekend in bed. i also spoke to colin. yes, i phoned him. i dont like ignoring each other and i feel that he is the only person who truly understands what i have been through. we have a bond, a connection ... something that will never be broken. we had a good chat. speaking to him made me feel better on two fronts. first, it cemented for me that i dont want to be involved with him - as he was proudly telling stories of drinking too much, partying, irresponsibility etc. a self-destructive lifestyle that makes me worry about him, but also makes me glad i'm not part of it anymore. second, he wants us to be in contact, he says he is not over me (we will never be 'over' each other - we will always occupy a space in each others hearts) and that i am his best friend. he wants to have dinner some time. i told him to stay in contact. i hope he does, because the next effort at contact needs to come from him. i would like us to have dinner some time (not now!). more closure for me? i think so.

i saw the psychiatrist on monday, may 19. now, he wants to diagnose me with some kind of anxiety disorder - last time it was depression - jeez! but i got what i wanted in the end. he gave me the anti-depressant that he had suggested to me the first time when i had had such bad withdrawals. THANK YOU!

now i have to wait a month for the anti-depressant, cipramil to kick-in and hopefully that will help me come off the clonazepam. then i will have to come off the cipramil. everything is delayed! ARGH! and the side-effects of the cipramil are horrid - today, anyway. i feel nauseous, i have a headache, my stomach is cramping and i just generally dont wanna get out of bed, let alone be social and do creative things that would normally make me happy. i feel like a baby. i want someone to come and hold me and make me feel better BUT happiness comes from within. so, right now ... i cant party ... i dont want to party. drinking is the LAST thing i want to do! but i have a friend coming round for tea tomorrow and another friend hopefully coming to visit on thursday. oh, and i had a lovely dinner with a group of friends last night. so, its not all bad. i'm just going back a little for a while. i'm going to feel sick again, before i can feel better again. *SIGH*

if this cipramil doesnt work im going to fucking SCREAM!

Complaining

2008-05-16T11:45:00.002+02:00

ok ... so i had to vent there a bit. but i am over it already. my health is the most important thing right now. i am happy and comfortable at home. i dont need to go partying all the time. the clubs will always be there, but i only have one brain. my sickness does not make me pathetic or any of those other things i said. sometimes i feel that way, but then i remember who i am. i am SUE and i wouldnt want to be anyone else. i have found my power again already. independence is a state of mind.

Reminder

2008-05-16T09:46:00.002+02:00

well ... so much for my triumphant return to "normal". i drove to my friend's house last night and had dinner. that was a big achievement. but then i woke up early this morning. i wasnt feeling good so i took a sinutab with codeine to try and help me sleep. a few minutes later i was convulsing like crazy. really fast. really scary. my whole body shaking like a rag doll, my neck twisting and stiffening. my muscles screaming in agony.

it makes me cry when this happens ... when will it stop? i was on top of the world and i got too excited. i got ahead of myself and then the little bugger came out to fuck with my body just to remind me, "you're not free yet sue! you still have months of this to go through!" maybe it is coming off the clonazepam, maybe it was the driving last night, who knows? who cares? i just fucking want it to STOP! i cant handle this backwards and forwards ... YAY! i'm fine ... NO! i'm not! its a living, depressing hell.

i was going to go out to a club with a friend tonight. WOW! did i get that wrong. there is NO way i could handle a loud club. i have had to cancel my outing, which i was so excited about. and every time i think i have emotionally moved forwards, i get thrown back again. i try to be strong about it ... take it in my stride. after all, i should be used to all this bullshit by now, right? but i'm not. i try so fucking hard! i try not to get depressed and fall into negative patterns of thinking BUT it is too hard!

i'm sick, i'm hurting, i'm scared, i'm tired, i'm depressed, i'm alone, i'm discarded, i'm ignored, i'm crying, i'm heartbroken ... how much more of this do i have to take?! enough is enough! make it stop!

Special

2008-05-15T14:34:00.006+02:00

Dancing Queen

yes ... ladies and gentlemen ... coming to you live is "ravings of the housebound - the anniversary special"! TA DA! well, i only say this cos i know i missed marking both of my anniversaries this month. so quickly lets give a moment of silence for thursday, 8 may which was my 1 year and 4 months no-smoking, finding AVM anniversary and my 1 year and 1 month writing this blog anniversary. DUM DUM DUM! and also a moment of silence please for the recently passed monday, 12 may which was my 1 year and 3 months gamma knife radio surgery anniversary. 1 year and 3 months ... that sounds so short ... feels like 2 years already ... wish it was 2 years already.

but lets look on the bright side! the reason i cant believe it has only been 1 year and 3 months since my surgery is that so much has happened in that time and i am a million times better than i was in taiwan (happier too!). my recovery speed seems to be increasing exponentially in fact. HOORAY! i have my official south african driver's licence now and just got back from driving my mom's car down to the chemist to buy her some medicine. she is sick in bed with the flu - i think it is what i had while we were at pearly beach. it is nice for me to be able to look after her for a change. i have recently realised that in some ways i have become lazy ... i have become so used to being sick, being cared for and not having to do things myself that i sometimes neglect to do simple things to help around the house or to go shopping etc. BUT that is going to change! a lot of things are going to change!

but maybe i should start at the beginning. the reason for my new outlook, my new-found power ... well, there are a few. first of all, it has been great having my friend staying with me. she reminds me of what it is to be a fully-functioning adult and i wish she wasn't moving out actually ;-). the driving has also helped remind me what it feels like to be independent, strong. in fact, i am going to a friend's house for dinner and i am driving there tonight. YAY! it's not that i can now go gallivanting with my mom's car, but it is just a great physical and mental step towards adulthood for me. a step towards responsibility, real life ... man! its scary!

another positive step is getting off the clonazepam. yesterday i went down by another 0.5 mg a day and i have been feeling ok. a bit jittery and teary-eyed, but i know that it is the medication so i try to just ignore it.

what else has been making me feel good? i am making a bit more money with my proofreading. i havent managed to find any more work, but i am getting more work from the one company that i am proofreading for AND most of the stuff i am proofing is interesting. bonus! some of it is about how the 'brand name' of a company has become worth more than the company itself. eg: the name 'playstation' is worth a lot more than the actual company, but it is intangible so how do you calculate the worth of a brand name? complicated, but interesting. there was also an interesting article on semiotics and how important it is in marketing. how one must be careful to use culturally correct images/signifiers to advertise a brand. eg: in the west the colour red means danger, but in the east red is the colour of celebration. this is interesting for me as i studied anthropology. and i studied english so the proofreading itself is fun too. fits perfectly with my pedantic side ;-).

i have also been continuing my "promote sue" campaign where i basically make sure that i am staying in touch with and seeing friends. this campaign is going well and i am very lucky to have a lot of wonderful friends who know that i am wonderful too. you teach others how to treat you. i am friendly and caring towards people and they are friendly and caring towards me. if not - then they are assholes and not worth my time anyway. with this attitude i have managed to find and keep seeing long-lost friends which is very exciting AND i am making some new friends. in fact, i am pretty happy in cape town. if i could find a way to make money and live comfortably here then i wouldnt leave. the more time i spend here, the more places i go, the more friends i make, the more i realise how special south africa and south africans are. but for now, the plan is still to return to taiwan next year some time. i have a lot of exploring still to do ... my friends will always be there as long as i am there for them too.

but i am forgetting two very important happenings ...

saturday, may 10 was a friend of mines birthday party. my visiting friend from thailand (visitor) is back in town, which has been lovely and we all went off to drink and watch rugby for this other friend's birthday. and guess what! i got drunk and i DANCED and i got home at 4 am - swaying, hee hee. it was fucking amazing! liberating! ecstasy! what i have been wishing for, moaning about ... I CAN DO IT! I'M BACK! yeeeeeeeeeeeeeehaaaaaaaaaaaaaaaaa!!!!!!!!!!!!!!! and the best thing about the drunken evening was not just that i had so much fun, but that i got to do it with two very good friends who i love dearly - it was a wonderful bonding experience for us to be able to party together like that again. and i got to bond with my friends boyfriend and discovered that we have the same birthday! how cool is that!?! i hate to brag, but i know that i am a lot of fun to go out with right now because all this dancing and partying is new to me, i'm like a kid. i cant help but be happy and energetic.

tuesday, may 13 i went to check out this self-growth course that my friend had told me about. i went with her boyfriend, who is a lovely guy and i got to sit in and see what the course is all about. as i have said before, i would usually 'poo poo' this kind of thing. be very critical and sceptical, but i have grown so much already and have learnt a lot about life and myself that i no longer feel the need to protect myself with scepticism and a false sense of superiority. i dont need to deride others to make myself feel better so, i went with an open mind. it was very interesting. really it is about changing the way that you look at your life, discovering the reality of what drives you and taking responsibility for your actions. it is about letting go of the past and becoming a better person. i wont say that i fell for all the 'buzz words' or the "it changed my life" stories, but a lot of what was said in those 3 hours made a lot of sense to me. i have just signed up to do the course at the end of august. my parents offered to pay for it - it is not expensive, but i still wouldnt have been able to afford it if it wasnt for mom and dad. THANK YOU! so, that is another adventure to look forward to. i think it will be more useful (and a helluva lot cheaper!) than going to see a psychologist once a week for the next year.

anything else? oh yes! i was almost part of the practical exam for wannabe neurosurgeons. hee hee. i was asked by my doctor to be a 'patient' for these exams. sure, why not. i went to the hospital on friday, 9 may with a friendly professor of neurosurgery. he was going to examine me and then i would have to spend the day at the hospital on monday, 12 may while 3/4 young doctors examined me and tried to guess what was wrong with me. kinda mean considering how weird my case is. and that is exactly what the professors of neurosurgery decided! the friendly neurosurgeon examined me and found that everything is perfectly normal (YAY!) except for my reflexes. when you hit below my knee, my stomach muscles tighten and pull me forward and when you lie me on my back and bend my leg up then my body and neck lift up too. BIZARRE!! the friendly professor of neurosurgery was completely amazed. it was decided that if the professors couldn't explain my case then the poor students wouldnt have a chance. i like being bizarre! ;-)

BUT even more than that ... i am liking becoming "normal" again!

PS

2008-05-15T10:30:00.001+02:00

oh yes! and i havent had a convulsion yet this month! no xanax (so far ...)! YAY!

"Holiday"

2008-05-07T02:06:00.006+02:00

it is 2 am and i really should be sleeping, but i just woke up from a horrible nightmare that included colin making me cry and feel like shit - so pretty much not far off from the reality of our relationship, really. i did try and go back to sleep. the last thing i need is to fuck up my sleeping patterns right now, but i have too many thoughts ... too many words burning a hole in my brain. so here i am.

obviously i am not quite over breaking up with my boyfriend. closure! ha! especially when i hear stories about how he is acting and it just makes me feel like he is pissing all over everything we went through, everything we shared, the love that we had - the love he professed to still have for me?! but then i guess this depression is also fuelled by jealousy because i cant go out and do all the crazy things that he's doing ... it is self-pity, plain and simple. i am sick, lonely, frustrated etc etc. but then if i think about it rationally, i wouldnt want to be doing all the crazy-stupid shit he is doing. of course i want to go out, dance and kiss a sexy boy. BUT i am also very grateful for this illness that has made me see how empty, boring and depressing that kind of lifestyle is.

Pearly Beach

and that is the last bitching and moaning i am doing about colin on this blog. i feel shit about a lot of things ... a lot that has been catalysed by him. so i dont want to lie and pretend im fine about him, not that i would ever take him back in a million years! but i acknowledge that he is a factor when i start spinning downwards ... but there are many other factors and what i really should be talking about is my holiday, my trip to pearly beach.

mom, dog and i left on monday morning, april 28. i took up the backseat lying down after taking a xanax to help me survive the 2 hour drive, but this was gonna be a landmark trip. i was going to not only survive the drive, but i wasn't going to get sick from it! i slept most of the way and felt fine when we arrived at pearly beach. a week reading by the sea, sounds idyllic, right?! hmmm ... not quite. but when we arrived i was determined to make the most of the time i had in this beautiful part of the world. it was sunny, but there was a very cold wind blowing. these weather conditions remained constant, but i was not to be deterred! i sat outside in a deck chair reading my book ... went to the beach every day ... all bundled up in warm clothes.

unfortunately the warm clothes didnt stop me from getting the most insane sore throat i have ever experienced. the first 3 nights, i struggled to sleep because my throat was too sore to breathe or swallow. i also had horrible convulsions those 3 nights and kept waking my poor mother up at all hours ... convulsing, crying and croaking. i was crying because i was in a lot of pain, i was scared and also because i was just so heartbroken that i was having convulsions. clearly i wasnt as hardcore as i thought i was and the drive had had a bad effect on me just like the last time (travelling). so, i was miserable and sick, struggling to sleep and feeling a bit like a loser for being alone, on holiday with my mother while all my other friends (and colin *sigh*) partied away the long weekend.

BUT some very wonderful things came out of the "holiday" too:

1. i started driving again!

i didnt really miss driving and didnt think i would be that excited about doing it again. but once i got behind the wheel and realised that i hadnt forgotten a thing it was exhilarating! my mom gave me the freedom to drive the car around pearly beach and it was fantastic! and then i even got to drive a short distance along a highway on our way home on monday, may 5. so, i am slowly starting to drive again, which is very exciting! YAY for ME!

2. i started writing my book!

yes, inspired by the sea and our lovely holiday house, i had an undesirable urge to turn this blog into a book. to write "properly". it was wonderful. although i only managed to get through a few posts as things are still a bit too 'close to home'. i am still a bit too raw to really write "properly". BUT i made a start! AND i have an editor friend who is keen to help me out! YAY for ME!

Macro coral

3. i took wonderful photos!

i had a great time exploring the beach and playing around with my camera, which was really fun. i especially enjoyed taking macro (very close-up) shots of beach flotsam and jetsam.

4. i had some emotional insights!

it may seem as though i am as fucked up about everything (my sickness, my sister, colin, my life!) now as i was before, and i am, but i spent soul-searching hours on the beach. staring at the implacable rolling waves, listening to the constant roar of the ocean, feeling the soft white sand between my toes, smelling the throat-scorching, cold salt air and just thinking ... letting my mind wander through memories, sad and happy ... past choices, good and bad ... present situations, depressing and challenging. i found a past boyfriend that i wish i hadnt lost and made some decisions about my emotional future. the big decision is that i am going to go on a course. it is a course that a friend of mine went on and suggested to me. it is a bit like a self-help/self-realisation type course run by qualified psychologists. normally i would 'poo poo' these kinds of courses, but i recognise that i desperately need help. i am not superwoman - never was. and two friends of mine, who i respect, have been on courses like this and said it really helped them. so, on tuesday, 20 may i am going with my friend to check things out and see if i really want to do it. i need to admit my problems, face them and then deal with them and i cant do it on my own! YAY for ME!?

5. i started coming off the clonazepam!

yes, i stuck to my intended date. on thursday, may 1 i took 1.5 mg of clonazepam in the morning as opposed to 2 mg. i will do this for 2 weeks and then on wednesday, may 14 i will take 1.5 mg in the morning and at night. i will do this for 2 weeks etc etc ... it's going to be hard. i know i will have withdrawal symptoms like; increased convulsions, uncontrollable crying, panic attacks, headaches, insomnia, feelings of unreality and thoughts that i am going crazy. BUT i am prepared for them and after 4 months i will never take clonazepam again! YAY for ME!

so, all in all ... not such a bad "holiday" after all (although i hope my mom enjoyed herself).

and NOW?

i am still sick although i have finally rid myself of the torturous sore throat. now i just have a bad cold, which makes me feel woozy and gives me headaches. but i have discovered sinutab with codeine! it is wonderful! (and addictive, i know) but it takes away my sinus headaches and, best of all, it helps me sleep! (although it doesnt seem to be helping tonight? ;-)

and my last bits of news. i have a friend staying for a month - she is paying rent etc - and i think this is going to be very good for me. i have a housemate! and she has already counselled me through a crying fit tonight. she has also had and is having a tough life. she understands depression, suicidal thoughts etc etc and is incredibly understanding and supportive. plus she will kick my ass if i go overboard with the self-pity ;-). YAY for my new housemate!

and today (or yesterday, actually) was my mom's birthday. tuesday, may 6 - happy birthday mom! we went out for lunch for my mom's birthday, which was a bit unsettling for me. this was because we went to the restaurant where my estranged sister works.

today/yesterday was the first time i have had any contact with her since the last big blow-up. it was weird and stressful. her and everyone else (my mom, uncle, grandmother and grandfather) acted as if nothing had ever happened! my sister sat with us and chatted and everyone was nice and friendly, but i couldnt do it. i wasnt rude because i know it would hurt my mom. but, personally, i am not prepared to just let her off the hook like that. i believe she needs to own up to her bad behaviour, apologise to everyone (not just me!) and then make a concerted effort to be part of the family. i would like nothing more than to have my sister as a friend, but i want her to phone me, organise a meeting and sit down and talk about everything. THEN we can be friends, we can be sisters. i say that i dont care, but of course i do! maybe i am just being stubborn. maybe i need to be the one to extend the olive branch. but right now ... i dont have any forgiveness in my heart.

so the crying tonight? a big fat mixture of sister, sickness, confusion, colin, low self-esteem (man, i need to work on that! ;-), clonazepam withdrawal etc etc ...

BUT tomorrow is a new day, a new start ... i am seeing a friend in the evening, but first i need to organise a way of making more money. i keep falling down ... i know i can pull myself up again, but hell! it is exhausting!

Weird

2008-04-27T10:15:00.005+02:00

i am going away with my mom for a week. we are leaving tomorrow to go and stay at our family beach house at pearly beach. fingers crossed that the trip goes better than last time (travelling). i will be away from the internet until we come back on sunday, may 4. i have just had a fun and yet emotionally-charged weekend and i feel i need to quickly write these weird feelings out before i leave.

i have been crying uncontrollably this morning. a mixture of sadness, frustration, confusion, happiness, fear, insecurity and a whole lotta other emotions that i cant even name. emotionally i am just feeling wobbly, WEIRD. not a good sign if i want to try and come off the clonazepam. i need to be in a very emotionally strong place to deal with the withdrawal symptoms, but i cant wait any longer. i am sticking to my date of may 1 come hell or high water!

why am i suddenly feeling so emotional? especially after the closure that i had with colin - i havent cried about him since that phone call. it is 'my time of the month', which always makes me a bit unstable and teary-eyed so that could be part of it, but i think the main reason is what i have been doing this weekend and how it has affected me mentally.

on friday, april 25 i went out with my mom, grandparents and uncle for my uncle's birthday. i had a fantastic time. ate delicious food, drank incredible wine (which i hadnt been planning to drink) and actually got pleasantly tipsy and verbose - maybe a bit too verbose ;-). i got home and i couldnt sleep. i was awake the entire night, refusing to take a xanax to help me sleep - which, in retrospect, was stupid - i lay in bed from 11 pm to 6 am listening to the ticking sound made by my japanese 'beckoning cat' whose arm waves up and down, sometimes trying to read and just feeling my brain going round and round without really thinking too hard. i dont know why i couldnt sleep. maybe it was the rich food and wine combo or this unnerving feeling of trepidation that wouldn't go away.

Long Street, Cape Town
i had plans to go 'out on the town' on saturday, april 26 so after running errands in the morning whilst feeling very ill and managing to stand in dog poo! aaah! i made sure to chill and rest the whole afternoon so that i would be ready for our girl's night out. i went with an old friend of mine and two of her friends. both lovely people - although i sometimes get the feeling that the one girl doesnt think much of me (stupid insecurity!). we went for great thai food and drank wine and then we continued on to two other fun bars, drinking cocktails and shooters (well, i stayed away from the shooters! but i shoulda stayed away from the mojito's too!).

it was the most amazing experience for me. i was running around the centre of town, full of vibey clubs and tonnes of people partying. i was part of the party! part of the fun for the first time in 18 months! it was overwhelming to suddenly be rushed back into my old lifestyle. everything is fast, fun, loud, colourful, drunken, CRAZY! packed with young people living life ... being normal! not a care in the world! oh my god, i was being normal! i didnt feel sick ... i didnt have to go home early. i got pretty drunk and spoke a lot of shit. i was having a ball and didnt want to go home when we did, i was in drunk, party girl mode (i'd forgotten what it felt like to be that girl!) ... i still hadnt danced! i hadnt flirted nearly enough! i didnt want the night to end!

i got home and just wanted to CRY (maybe i did?). i dont know why. obviously the booze had made me a bit emotional - especially mixed with my meds - and i was still upset that i was home when i didnt want to be. but i was also crying about colin?! the alcohol helped ... but i think it might also have been that i had always pictured me returning to partying life with him, that he would see me in all my fun, sexy glory again. i would be the girl that he fell in love with, i would be myself, i would be able to play with him! i would be normal! we could be normal together and all the horrible things that had happened to us would finally be in the past. but he wasnt there to share in my victory. BUT i really loved doing it with 'the girls' and i didnt miss him during the night? weird ... i dont even know what im feeling im so confused!

but maybe it was also a hollow victory. i woke up this morning feeling very unsettled. i cried for quite a while. i cried because i had had fun last night, but that fun also reminded me of the life i have lost since i have been sick. i felt frustrated because i know i am not fully healthy yet and i know that i dont have the freedom, the independence to play like i used to. i sound like a spoilt brat, i know. i should be happy at what i achieved last night, the fun i had, the cool places i went to ... i should appreciate how i am slowly recovering (and i do!). BUT, as i have said before, the more little tastes i get of that life, the more trapped i feel, the more impatient, angry, frustrated. im only human.

i think the other problem is also that i am actually scared of that freedom, of that independence. one day i will be able to do anything, but i have become so used to being sick, staying at home, leading a measured, controlled life. that feeling of freedom scares me, all that space, what if i fall over the edge?! everything was so familiar and yet uncontrollable, frightening. maybe i was scaring myself? i dont want to go back to getting embarrassingly drunk like i used to. i want to dance and have fun, but i want to control my drinking. i am aware of it, so hopefully i wont fall back into the same old self-destructive patterns that i keep criticising colin for.

but i am moaning too much, i think i was also crying because i was overwhelmed at being able to have such carefree fun again. it was a magical feeling. a gift. it is the same with sex. i always cried after having sex with colin, just because of the sheer joy, the intensity of being able to share something that intimate with the person that i loved so much - i wish i could still do that. things that have been denied me for so long; things that truly make me happy, make me feel free, just fucking make me feel normal are slowly returning and that causes unbelievable, indescribable joy!

i am crying tears of mind-blowing happiness and heart-wrenching sadness. just the simple freedom to 'do what you want', 'be who you truly are' that everyone takes for granted is coming back to me and the bliss is painful.

Closure

2008-04-24T18:32:00.007+02:00

the weather was beautiful today so i sat outside and beaded and listened to music most of the day. i washed my hair this morning to make myself look presentable for a friend who was coming over for drinks later. my hair looks stunning and i trimmed the front pieces a bit to frame my face better. i am feeling good about myself. i am tanned, slim and sexy!

at about 4pm i got an sms from my friend saying she cant make it. another night alone at home after i just spent a whole day alone desperately trying to keep myself entertained and positive! i cracked ... crying, i decided to call colin. i was desperate for some kind of communication between us. things felt unfinished. i hated 'ignoring' each other.

the conversation was actually good for me. colin told me what had been happening in his life for the last month. i didnt say much as i didnt feel like talking, i was too busy crying! i told him that i still loved him and that i missed him and he said he felt the same. sadly for us, this is not enough. our relationship was not good. colin said this and i know it to be true - i have said it on this blog plenty of times! i knew it when i broke up with him the first time! - but that doesnt make it any easier.

love is definitely not "all you need" - the beatles had NO idea what they were talking about! so, i am still sad - and so is colin (which i needed to know). i miss joking with him, i miss teasing him, i miss talking in gibberish-lovey-dovey to him, i miss watching movies or a season of south park for the umpteenth time with him, i miss arguing about who gets tickles, i miss listening to his latest music track and showing him my latest project, i miss talking and sharing everything with him, i miss eating with him, i miss drinking with him, i miss partying with him, i miss holding him, i miss the wonderful sex and just having his skin touch mine, i miss hearing his voice, i miss seeing his face, i miss living with him, i miss knowing him but at least now i have closure ... i feel much better (and I MUST REMEMBER THIS FEELING).

I Love You!

i am glad that i phoned him and he was happy to hear my voice. we care about each other, but it is time to go our separate ways. FUCKING HEARTBREAKING, but unfortunately true. im not even going to speculate about the future! now is for ME and i rock! (so much, you have no idea! ;-)

Sunshine

2008-04-23T10:10:00.011+02:00

i heard last night that colin has been running around getting very drunk, acting like a fool and saying how wonderful it is to be single - not to be tied to me anymore. this is just 4 months after he wrote me an email begging me to take him back and telling me how much he loved me and how he couldn't live without me. we know the same people so unfortunately word gets around.

i had been slowly trying to sort myself out, but this news just took me back to square one. so, i have been crying, sobbing all night and morning. it is hard to describe because i dont want him back, especially after hearing how he has been acting recently ... i want a MAN, not an 18 year old. i want someone who will respect me and treat me with love and kindness, someone stable, someone i can rely on. someone who doesn't need to down bottles of booze and do stupid things to have fun. i guess i am just very disappointed that he didn't turn out to be the partner that he promised to be and that i fooled myself into believing he could be. a leopard doesnt change its spots. and the fact that i still love him, miss him and wish that things could've worked for us ... whereas he is just ecstatic without me really, it just fucking HURTS!

but, i have been doing better and that is really what this post is about. its about seeing the good in all situations and appreciating everything in life. its about noticing the small joys and being kind to yourself. i have been pretty busy with friends. either going out with them or just having them come to visit and they are all just fantastic. i had a momentous saturday night, april 19. i went to a braai (bbq) at a friends house. i wasnt feeling good beforehand and had been trying not to cry the whole day so i took a xanax before she came to fetch me and i proceeded to have an awesome night. i managed to drink a bottle of wine, a beer and an apple sourz! i had great conversations with some awesome people and i even went out with them and got home at 2am! i'm slowly returning to form. cant wait until i can just go out like a normal person ... although i am probably going to have to slow down a bit in the next 4 months while i come off the clonazepam.

but i cant wait to start coming off the clonazepam too! that is going to be a huge challenge and i am ready to take it on. i need to do things for ME! my health, my brain, my body, my emotions, my heart. so, i have also started listening to music again, which makes me very happy and i now like to sit in the sun in the mornings and bead, making bracelets and anklets with little bells etc for my friends. the painting will start when it starts to rain and i have some great ideas to use sequins, coloured sand and other mixed media in my paintings just for fun.

i am going to the library to get a stack of books this weekend before i go away to the beach with my mom for a week. but before that i have a wonderful old friend coming to visit on sunday, april 27 ... i havent seen her in ages and cant wait to talk things out with her (she's a psychologist ;-). and i might even be lucky enough to have some of my friends come and join me at our beach house for a few days!

physically i am slowly getting stronger ... there is no need for me to even see my neurosurgeon anymore - he just faxes scripts for my meds to my mom, although i still average about 4 bad convulsions a month. this month may be a bit worse thanks to stress. but i am planning for the future. i am doing a little bit of proofreading to make some money, with more to come. i also plan to try and get a transcription job once i am back from holiday. i am in a good situation with money at the moment (i have enough for a return ticket to taiwan in south africa and then i have some savings in taiwan that i can use to set myself up again). so, i want to start working harder so that i stay in a good financial position. so yes ... i plan to return to taiwan when i am better and make back my savings and continue my rudely interrupted travels (not sure if i have mentioned that). hopefully i will pick up my perfect guy along the way, but for now i should enjoy being single - and a lot of the time i do.

I LOVE:

1. not having to get up early and go to work in the morning.

2. working from home.

3. the morning sun on my bed.

4. living in the suburbs with a garden.

5. walking between autumn trees.

6. chasing the sunshine around my garden.

7. listening and dancing to music.

8. writing, painting, beading, reading, photography etc ...

9. my mom and family (besides my psycho sister ;-/.

10. my friends (one of whom is coming to stay with me for a month - yay!).

11. myself!

12. my sexy clothes.

13. having a great internet connection.

14. going to the theatre.

15. life!

16. you guys that read my blog and send me messages of encouragement (you rock! ;-).

17. tea.

this list is not in order of preference - obviously! ;-) and there is a tonne of stuff that i have left out, but i think you get the picture. i guess in a weird way i'm lucky; with all the shit that has/is happening to me it makes me appreciate everything so much more. so, my message to you, dear faithful readers is ... bitch, moan and cry because you need to get those negative feelings out BUT then go on to chase the sunshine, love life and know how lucky you are to be living it every day!

Today

2008-04-16T15:12:00.004+02:00

yesterday i was happy. i didnt cry at all. of course i thought about him, but i didnt get upset. i kept myself busy and tried to stay content.

today the dog woke me up at 5:30 am with its barking. i started thinking about him - he is never far from my thoughts right now. i have tried to be angry with him, i have tried to hate him, i have tried to be rational, i have tried to be philosophical, i have tried to trick myself BUT one thing still remains. i love him. i miss him. so today ... i cry cos i need to.

i wonder what tomorrow will bring?

but whatever happens i will continue to try and see my friends, i will keep getting better, i will force myself to appreciate what i have right now, i will start coming off the clonazepam in May, i will go to our family beach house with my mom in May and i will continue to hope that maybe ... one day .... we can be together again.

ALWAYS REMEMBER:

"Do not spoil what you have by desiring what you have not;

remember that what you now have was once among the things only hoped for."

Anniversary

2008-04-12T21:02:00.006+02:00

Once upon a time ...

yes, yes. today is the anniversary of my gamma knife radio surgery. the one that saved my life by taking it away from me for 2 years. well, it hasnt been 2 years ... but it has been 1 year and 2 months. yay! (insert sarcasm here).

my crying has slowed down to generally only once a day for about an hour now. colin came to move all of his things out of my house on thursday, 10 april. it was really gut-wrenching to see him, but i now really feel what i always knew - i am an amazing, beautiful, sexy, fun-filled etc etc person and he has Lost me. poor colin. i am not romanticising our relationship anymore, i am not crying for the loss of him anymore. i am crying for the loss of ME!

he sent me an sms today saying how he misses me and how awful he feels ... blah blah blah. it was HIS decision?! if he loves me so and misses me so then why did he leave? i have seen the end of quite a few relationships and NONE of my relationships ended with the feeling that it was wrong. so ... i am endeavouring to move on with my life, such as it is ... i had a fantastic shopping spree with my mom today. bought clothes that add to my already blaring sex-appeal. i was having a great day until i got that jarring sms. but i ignored it, even though it brought up all the terrible emotions, all the sobbing, all the depression ... what am i supposed to say anyway?

the thing that i am truly sad about is that i cant be ME! all i wish for, all i dream of is to dress up in my sexy little dress and GO OUT! GO OUT to a CLUB! GO OUT with my FRIENDS! I WANT TO DANCE! I WANT TO FUCK UP THE DANCE FLOOR! I WANT TO PARTY! I WANT TO KISS A SEXY BOY! I WANT TO HAVE FUN! I WANT MY INDEPENDENCE! I WANT MY FREEDOM! I WANT TO LIVE!

BUT i cannot ... instead i am sitting at home alone on a saturday night - even my mother is out! - wishing, dreaming of being NORMAL! (dressing up and dancing in my room, pathetic! - especially since even that gives me convulsions!) so, shame! poor colin! i wonder what friends you are partying with tonight. i wonder what loud music you are jamming to. i wonder where you are drowning your 'sorrows'. i dont ever want to be you - but i'll sure as hell take your health.

and yes, yes ... i know i'm bitter. of course, i'm bitter!

Anniversary

2008-04-08T12:30:00.001+02:00

Empty

Another month has passed and what a month it has been. i nose-dived from superwoman to shattered ball of goo, from strong and positive to depressed and lonely in a few short days. and all it took was some harsh words and the disappearance of my boyfriend of 3 years. a man that i had rejected for many excellent reasons ... a man that i then forgave, started on a new path with ... a path towards happiness, togetherness and the future only to have that forgiveness and my open heart thrown back in my face a few months later. we have been through so much, we know each other so well, we love each other. WHY?! it takes a BIG man to break up with his sick girlfriend.

my alarm woke me up this morning. confused, i lay in bed ... re-remembering how the landscape of my emotional life has changed. forced myself to get up so i could take my meds. i checked my mail and had some tea. cried in the garden, cried in the shower and cried while i did the washing up. now i am crying as i write this. i have no real work right now. and i dont know if i want it. i am completely unmotivated to make any changes in my life. i rattle around the empty house all day and most nights too, since my mother is often out. i am well and truly alone ... BROKEN. how could this happen to superwoman? how could this happen so quickly? i hate him for what he has done to me. i feel tricked, cheated.

this is not the first time ... i know i will get better. i know i will be better. better than he will ever be! but as he continues with his life ... planning to go overseas or whatever. i am trapped in my mother's house, doing nothing, feeling nothing but loss, emptiness, hopelessness. desperately i try to fill the endless days ... with what? i don't know. i don't want to do anything ...

but i do do things. i went to that party on friday, april 4 and i had a great time. it was actually fantastic to reconnect with people that i haven't seen in years and they were all so lovely. i had a phone conversation with colin that upset me the next day, saturday, april 5, but i was lucky enough to have a friend arrive to visit and after letting me cry and moan for a while she did wonders to cheer me up. so, all is not lost ... but today, like all my other days, is for crying and loneliness. one day it will stop.

colin said he is coming to fetch all his stuff tomorrow. it is about time it left my house.

but this post is not just about my self-pity, it is also to mark the passing of more time - man do i have a LOT of that! it is 1 year and 3 months since i stopped smoking, was diagnosed with an AVM on my brain stem and it has been 1 whole year since i started this blog. will it ever be a book?

Forward

2008-04-08T12:00:00.000+02:00

normally i dont like these soppy, forwarded email stories ... but in my current state of mind, it touched me and surprise surprise! made me ... cry. so, i am publishing it here for you to read. maybe it will touch your heart. it certainly gave me some strength. (ok ... i deleted the long-winded story and just kept the important points ;-)

"Life is not measured by the number of breaths we take but by the moments that take our breath away," Think about this. You may not realize it, but it's 100% true.

1. At least 2 people in this world love you so much they would die for you.
2. At least 15 people in this world love you in some way.
3. A smile from you can bring happiness to anyone, even if they don't like you.
4. Every night, SOMEONE thinks about you before they go to sleep.
5. You mean the world to someone.
6. If not for you, someone may not be living.
7. You are special and unique.
8. When you think you have no chance of getting what you want, you probably won't get it, but if you trust God to do what's best, and wait on His time, sooner or later, you will get it or something better. (sorry 'bout the god reference ;-)
9. When you make the biggest mistake ever, something good can still come from it.
10. When you think the world has turned its back on you, take a look: you most likely turned your back on the world.
11. Someone that you don't even know exists loves you.
12. Always remember the compliments you received. Forget about the rude remarks.
13. Always tell someone how you feel about them; you will feel much better when they know and you'll both be happy.
14. If you have a great friend, take the time to let them know that they are great.

Send this letter to all the people you care about, if you do so, you will certainly brighten someone's day and might change their perspective on life...for the better. "Thanks for your time."

Rollercoaster

2008-04-03T14:46:00.006+02:00

i have broken my resolution already. in fact, i broke it a few times. i spoke to colin. i could hardly avoid it since he stayed in my house until friday, 28 march. he also brought me chocolate and kept coming and trying to speak to me. this was horribly upsetting as the last thing i needed was to see the person that i loved, the person i trusted, the person i thought i had a future with after he had dumped me. i had puffy red eyelids and was crying all the time and i knew that i had to get away from colin.

i organised to spend the night with a friend who was house sitting a house just down the road from me. i didnt know when colin was moving out and i needed to get away. i was walking up the road on friday, 28 march praying that i wasnt going to see colin. but there he was, walking down from the train station. dammit! i thought i would be able to miss him! i said hi and told him i was going to stay with a friend. he said he had bought me a pie and got upset when i didnt want to eat it with him. so, being the sucker i am. i went down the road, back to my house and sat and ate a pie across from the man who had just shattered my heart. i started crying, he wanted to make me tea and i knew i had to leave. this is not healthy! this is not right! i cant see you!

"i'm trying to be nice" he says. you just broke my heart, said horrible things to me and now you want to be nice to me?! what universe do you live in?! i ended up spending the whole weekend with my friend, which did me the world of good. colin went out with a friend and stayed at this friend's house for the weekend. then i got an sms to say that he would be staying with this friend until he could find his own flat and that he would be coming to collect some of his things.

i went home on sunday, 30 march, but i was going out again with my dad to watch a concert. a concert that we had bought a ticket for colin too! i was feeling tired and not quite so weepy as i had been. colin came to fetch his stuff, drop off the keys and give me the R1000 that he owed me. he tried to talk to me. saying things like, "you know this had to happen. this is better." blah blah blah! all things that he had probably been telling himself for ages. he is practical and i am too emotional and romantic. i wasnt interested in talking to him. it's already been done ...

he left and i enjoyed the concert with my dad and also managed to see my visiting friend one last time before she left, which made me very happy. i woke up on monday morning, 31 march and i didnt start crying! i was already starting to feel stronger. i am a wonderful person and i deserve to be treated with love and respect ALL the time, not just some of the time. i made sure to get in contact with friends and make plans to see people so i wouldn't just be hanging around the house by myself crying all the time. actually, it is kinda nice being on my own. not having someone constantly remarking on what i am doing, constantly criticising. i need to be on my own for a while. single is good! i also got a little job doing some proofreading. it doesn't pay a lot of money, but it isn't stressful and i can do it in my own time.

colin sent me an sms on tuesday, 1 march saying how sorry he was and that he was sad and hoped that i was ok. i didnt respond ... i had made a resolution, remember! NO contact! i was better off without him!

then all of a sudden its not ok! my mom went to class last night and i was alone. i had been alone all day and then i was alone at night. i started crying. i missed him. i was lonely. i love him, for fuck's sake! i was woken up early this morning and couldnt get back to sleep. i ended up in tears ... thinking about everything that had happened ... all we had gone through. from when we first got together and had fun to when i was sick and scared in hospital and he was my only support. i sent him an email at 5am. i wish i hadnt! i broke my resolution! NO contact!

today i am crying like i was last week. this is going to take a long time, but i am staying firm. i cried a lot while i was going out with colin. 3 years of crying. this is going to be the last time i cry for him. we can never go back. I can never go back. but man, it hurts like HELL! i was convinced that we were going to be together for a long time. i was happy. i was convinced that he loved me. that he was committed to me. i wanted our relationship to work so badly! all of that has just crumbled from under my feet. i'm so disappointed in how easily he gave up on us that i dont believe his heart was truly in it from the start.

i know i am strong. i know i will be ok, EVENTUALLY. but right now ... i'm dissolving in tears. i have to go to a party tomorrow night. i will be seeing some people that i havent seen in years. i dont know if i am looking forward to it. yes, i had brain surgery, am still sick and living with my mother, cant drive, dont have a proper job ... oh, and my boyfriend just dumped me. what a WINNER i am.

Resolution

2008-03-27T08:32:00.004+02:00

so, colin sent me an sms a few hours after he had left for work."please can i stay at your house?" i let him. why?! because i am stupid and i love him. then i spent a wonderful day at the beach with friends who all decided that the whole thing was ridiculous and he couldn't possibly mean it. i went home with some hope. got horribly sick ... by myself in the house for 2 hours while my mom was out and colin was at a jazz concert. but i was ok ... i have to get used to being on my own again i reasoned, what better time to start.

colin came back and told me how awful our relationship was and how miserable he was. he broke up with me again. i was/am destroyed. i had opened my heart to him and he trampled all over it. i guess what makes it so awful is that it came as a complete surprise to me. i thought things were going really well ... we have a fight (admittedly not the first) and BAM! he cant stand to live with me anymore.

i should never have gotten back together with him. I gave HIM a second chance! and then he turns around and throws it in my face. i am a mess now, two days ago i was doing great. i am at the sad, crying stage ... hope i reach the self-righteous, strong stage soon.

the worst thing is that he is still in my house trying to "comfort" me - bleugh! but i am putting a stop to that ... from now on i dont want to talk to him or have any contact. that was my new year's resolution. HA! well, it is coming into effect as of now!

HA HA HA!

2008-03-26T08:24:00.003+02:00

Broken

colin and i broke up last night. yes, again! this time for good. we had another fight that ended really badly. then i cried for a couple of hours while we talked and he told me how miserable he was and how much i irritated him ... among other things. so much for my positive attitude. so much for my 'good feelings' about the future. so much for feeling 'strong'. HA! what a joke!

i am crying again this morning. my heart is fucking sore. i thought everything was going well, i was happy and i thought he was too! apparently i was mistaken. this is so much worse than if we had just ended it the first time i broke up with him. he made me believe that he loved me and that he would do anything to make things work between us. we spoke about plans for the future and i believed them. HA! what a fool!

i guess it is quite fitting that i chose april 1 to come off my clonazepam - happy april fool's day sue! you fucking idiot. and now? i dont know when i will see him again. i am a mess, but i will get better. just as i felt the last time ... right now i am depressed, crying, hysterical, fucked up! but sometime in the future ... i wont be. i am going out with friends today - THANK GOD! - and i am going to try and have a good time. i am going to try not to talk about it too much, but i might cry - it is 'my thing' after all.

and then ...? i will wait for my heart to heal and the sadness and disappointment to fade. i will wait and i will be strong again. i will be happy and positive again. but not just yet ...

man, aint life a bitch?!

Visitor

2008-03-25T14:13:00.005+02:00

Braai Fire

since last i wrote i have been continuing with my daily routine. i eat my salad, go for walks, lie in the sun, swim in the pool and try and do something that keeps me entertained and makes me happy like; reading, writing or photography. i havent done any painting since i got home, but i am starting to feel 'the urge to paint' return. i have also been lucky to get some more work from my uncle, but that seems to have stopped now. my daily routine was, happily, disrupted by the arrival of an old friend who i havent seen in about 3 years.

she arrived on tuesday, 18 march and got dropped off at my house in the early afternoon. i was a bit nervous as i was the only entertainment she was going to have for at least 3 days. was i up to the task? i have become so used to my little routine that it was a bit 'weird' to suddenly have someone else with me all day. but it has been fantastic to see her and i think that it is good for me to be shaken outta my routine once in a while. i have to admit that i did find it quite tiring, sitting and talking with someone all day. but i soon got used to it.

i also managed to deal with some mild convulsions on wednesday, march 19 without xanax! YAY! i am trying to stick to my resolution ... a change in attitude ... i can think myself better! (or at least help myself along the way ;-). i havent managed to stick to the 'no-drinking' resolution, but i have been pretty responsible when i have drunk. i mean ... come on! an old friend comes to visit! how can i not drink?! i even managed to take her on a train trip to kalk bay on thursday, 20 march, which was very cool.

then it was the long easter weekend, friday 21 - monday 24 march. this was great as i got to spend some time with colin alone in the house as my mom went away and my friend went to stay with another friend of hers (i also slept A LOT). we had a braai (bbq) on saturday, 22 march, which was lots of fun although i was disappointed at the amount of people who cancelled at the last minute (this goes back to my last bitch session about how frustrated i have become with some unreliable people who just dont seem to want to make the effort - i constantly find myself trying to be social and organise to see people, but it doesnt often get reciprocated. when it does, it is invites to parties that people should know i cant go to (a) because i am sick and (b) because i dont have a car! OK, OK ... end of bitch session now ;-). but in the end it was better to have a smaller group of people and i managed to drink a whole bottle of rose wine by myself! ;-).

things were looking good. unfortunately i had some horrible convulsions in the early morning, on sunday, 23 march and had to take a xanax. i felt like i was giving up, but i suppose the drug still has its uses ... especially since i had to take it before going out with colin's dad and his step-mom that evening. i was sick again while out with them! how embarrassing!

and now? my friend is staying with another friend for a while, everyone is back at work and i have spent my first day in the house alone for a while. it feels a bit 'weird' now. but i'm sure i will be seeing my visiting friend and the friend she is staying with (who is on holiday) during this week. but i also need to focus on keeping my life 'on track'. i have to find some more work. the publishing company who wanted me to proofread two books for them hasnt contacted me in ages - wondering if they ever will - and the work from my uncle has dried up. i am also still busy mentally and physically preparing myself to start coming off the clonazepam. i don't really want to do it while my friend is visiting, but i'm starting to think that maybe i should just DO IT! the less fuss i make about it, the less it will bother me, psychologically - MAYBE?!

i had set the date for tuesday, april 1, but i feel strong NOW. maybe i should just start lowering the dosage without a big song and dance ... maybe that is the way to do it. i have such a burning desire to just fucking get better! i am planning to take 0.5 mg less every 2 weeks - WAY slower than the first time i tried. theoretically it should then take me 4 months. but no ... i think i will wait, especially since my period (sorry boys! ;-) is coming up and that always causes some hormone imbalances and loony behaviour.

OK, decided! 1 april it is ... dum dum dum!

Shrink

2008-03-14T14:10:00.000+02:00

monday, 10 march at 4pm. that was my appointment time with the psychiatrist. i didn't even know his name, all i really wanted was someone who had a bit more insight into benzodiazepines and could hopefully help me successfully come off the bloody clonazepam. i tried to sleep off most of my hangover from sunday and tried to get rid of the cartoonish, puffy, red eyelids i had created thanks to all my hysterical crying the night before. by the afternoon i had pulled myself together after a reminder from a good friend that there is "NO guilt! ONLY lessons!!!" very true! i was ready to meet the psychiatrist.

he turned out to be a lovely, soft-spoken man with the gentle, bearded face of everyone's favourite uncle. he listened to my story, asked some intelligent questions and made some astute observations. he explained that the mind-body link is very strong and that sometimes it is difficult to tell which is causing which. obviously i am depressed, i have always had a mercurial personality .. maybe i am even a bit manic. i have my insecurities (as does everyone). in truth; i am slightly mad, a little bit unbalanced, marginally off-kilter. he suggested, as i also know, that perhaps the spasms were being caused by my emotional instability ... when i feel stressed and depressed then i have convulsions. yes, i agree. sometimes.

BUT i saw what he was angling towards ... do i sometimes suffer from insomnia? etc etc ... he was going through the 'signs of depression check-list'. and yes, "ladies and gentlemen! sue is the proud winner! she is depressed and needs to go on a drug to help her! a round of applause for her and her lovely shrink! ladies and gentlemen!" cypramol. it is a low-level serotonin booster and might help to stabilise my moods (i have friends who take it/ have taken it). the psychiatrist was very nice when he suggested it ... he suggested it might help me come off the clonazepam. he also suggested a MUCH slower dosage reduction of the clonazepam than did my neurosurgeon.

he did leave the final decision up to me. my immediate reaction was NO! i have been sick and experienced horrifying pain and suffering, terrifying psychological and emotional trauma. i am still getting through it - OF COURSE i am a bit crazy! but i have gotten this far without resorting to anti-depressants ... i dont want to start taking them now. he was very understanding of this and it was decided that i would try and come off the clonazepam by myself for a month (starting in April as i have a friend coming to stay with me next week - dont wanna be coming off some weird drug while she is here!). if things dont go well then i can go back to him and try the anti-depressant.

i came home and discussed it with my mom and colin. they both think i should go on the cypramol and i nearly changed my mind. but i have been thinking about it this week and i dont want to use this anti-depressant. i believe that i can beat the clonazepam by myself. as soon as i take the anti-depressant then i will be numbed, i wont be myself, how will i know if what i am feeling is real? its almost like giving up to me. i have been through so much already, i have proved how strong i can be. i know i can do this by myself. mentally and emotionally, i am strong enough!

i have had so many drugs rammed down my throat by doctors (most of which haven't worked - including the clonazepam!). i am trying to get rid of them. not take more! i know i can make myself better ... i am mentally strong. i understand the things that make me depressed and i know what i need to do to try and avoid that depression. i also know what to expect from the clonazepam withdrawal now. the mind-body link works both ways and i believe that my physical suffering is what makes me upset more often than the other way around. i just need to be strong, stay calm and deal with my physical symptoms as they come.

Me. Hello!

i have already started this week ... on tuesday, march 11 i went to the dentist. the drilling and the local anaesthetic always makes me feel sick afterwards so, i have been suffering from some horrible nausea and some spasms in the last few days. colin just tells me to take a xanax, but i dont need to ... all i have to do is lie quietly in bed and the nausea and spasms will go away. i dont want to be so reliant on drugs anymore ... i can will myself better. i can will myself positive. WATCH ME! i am superwoman!

Drinking

2008-03-13T13:51:00.005+02:00

9 March 2008

Kirstenbosch Crowds

as i think i have mentioned before, i used to be a heavy drinker before i got sick. then i wasn't allowed to drink alcohol for a year and realised what a pointless habit it is. why would you want to spend your money on something that makes you think you're cool when you're actually acting like an ass? something that then makes you feel sick the next day? maybe even sick with shame?! i came to realise that i could have just as much fun without alcohol and that i was just as fun and interesting a person - probably more so! actually - when i wasn't drunk.

then i came home and i was allowed to drink again. i was excited at first and enjoyed drinking with friends and family, BUT i always only drank a little bit. maybe a glass or two of wine. i didnt like the way i started to feel if i drank too much, dizzy and out of control - dangerous. this weekend i reminded myself of why i need to control my drinking. i reminded myself of who i used to be, a person i don't particularly wanna be again (in some respects, anyway).

on sunday, 9 march colin and i went to the kirstenbosch botanical gardens to watch goldfish, an awesome south african band. we got there early and were saving places for some other friends. we had three bottles of wine to tide us over. we had a great time and i was pretty drunk by the end of the concert. the drunkest i have been since i got sick. and it was great! it was like i wasn't sick. i was my old self again. crazy, party, party, dancing sue ... not a care in the world! colin and i got home and decided to go for mojitos at a restaurant near my house. it was a stupid decision - drunk people are well known for making stupid decisions.

Happy
we were very happy when we got there and had two mojitos each in quick succession. neither of us remembers what we talked about but we got into an argument and all i remember is storming out of the restaurant (how embarrassing!). then i was at home and crying and crying, feeling suicidal. colin was in bed already, but i couldn't control myself. i went BERSERK and nearly downed a whole bottle of xanax. i woke my mom up looking for consolation and eventually woke colin up at 4am. he didnt remember what the fight had been about either. so he calmed me down and i eventually fell asleep.

i hope this never happens again! i shouldn't have drunk so much alcohol. DUH! it obviously reacted badly with the meds that i am still taking. the scariest thing for me is the 'black outs'. i cant remember what happened! i dont want to turn into that psycho, outta control person again. i want more out of my life and i know colin does too. we both felt terrible the next day and promised each other not to drink like that again - which doesn't mean it's not gonna happen of course! but at least we are both aware.

so, i got taught a valuable lesson this weekend ... one which i thought i had already learnt. and now? i am hesitant to drink again ... but i will. but i dont ever want to end up like that again. THAT was just stupid! and the worst part of the whole experience is that i then had to go and see the psychiatrist the next day with a hangover ...

Anniversary

2008-03-12T10:18:00.008+02:00

13 Months Ago Today

and yes, here is my other anniversary rearing it's ugly head. this is the anniversary of my actual gamma knife radio surgery. it has been one year + 1 month since i had the surgery (11 months to go). my health has definitely improved, but not as drastically as i would like. it is very difficult for people to understand my illness as i have times when i am perfectly fine and strong and other times when i am very sick. i seem to get two good weeks and then two bad weeks a month, if i can quantify it like that.

when i look at that picture of the girl in pink pyjamas, oxygen tubes coming out of her nose, stereotactic head frame screwed to her head i feel like crying for her because she had to go through all that and i wonder how on earth she ever did it. then i have to remember that it's me and i realise how far i have really come. how healthy i am, how good i look compared to that girl in the hospital pyjamas. compared to that time; when i couldn't even walk to the bathroom, where i was having 3 hour convulsions twice a day, where i couldn't stand up in the shower and had to lie in bed with a blanket over my head most of the time to try and control my nausea. looking at that photo, remembering those times i realise how unSICK i am right now. sure, i'm nowhere near 100% and i am way past kidding myself that i will be fully recovered earlier than february 2009. but that is OK!

i am comfortable where i am right now. enjoying being at home. having some friends around. having colin around. having family around. getting good medical care, which is all just around the corner from my house! and i am desperately lapping up the african sun before winter hits ;-).

Anniversary

2008-03-08T13:48:00.003+02:00

Yes, it is that time once again ladies and gentlemen ... time to mark yet another month in my historic journey to complete health and full recovery. it is now one year + two months sans ciggies for me, but i still get violent urges to snatch lit cigarettes out of people's hands. luckily i dont get drunk enough yet to actually do it. i know one friend who started smoking again after a year and a half. i must never let down my guard!

it is also one year + two months since they found 'the little bugger' on my brain stem. and i have been blogging, sporadically i admit, for 11 months. almost a year of blogging! and i have to admit that i am feeling a bit guilty. i know that i havent been blogging as often as i used to and i do feel that my posts are not up to the standard of my first few months of posting. i think i lost a bit of interest and inspiration for a while. i dont want this blog to turn into an 'agony aunt', just a vehicle for my moaning - although i do need it for that too. but i want to write more introspective and interesting posts.

i plan to write something about cape town suburbia vs taipei city life and i also want to write a post on the impact that spending all day in one's pyjamas has on one's choice of wardrobe when leaving the house. so, i have some stuff up my sleeve ... but i think i will pull said 'stuff' outta my pyjama sleeve in winter. mainly because then i will actually have pyjama sleeves - right now it is so hot i am wearing a vest ;-). and yes, that is also my excuse for not blogging as diligently as before. it is summer in cape town and i have been busy tanning, swimming, seeing friends, family and working so that i havent really had much time to blog.

this bout of blogging guilt has partly been caused by the fact that someone i know has been nominated for an 'SA blog of the year award'. i coulda been in there! guilt can be a good thing when it kicks you off your ass and forces you to be pro-active. i MUST start on my book too! (jeez! i sound like a school kid talking about homework! ;-)

BUT it is a beautiful day in Africa and i want to spend it with colin right now ... NOT with my computer.

Attitude

2008-03-06T14:41:00.003+02:00

so i guess its about time for me to write another update after my last rant. obviously i have a lot of negative repressed feelings that seem to burst out of me once in a while, normally when i have a set-back and get physically sick again. im starting to think that what i need is a punching bag rather than a shrink. something that i can take all my sadness, frustration, anger and bitterness out on. but first i need to acknowledge what i am bitter and angry about.

obviously my incapacitation thanks to my illness (no sex, no dancing, no normality) and the terror and pain of my convulsions is a huge factor, but there is so much else. my guilt at being a burden, on my mom and colin especially. my jealousy of other people (even my friends) who can work and play normally. the fight with my sister; her bizarre behaviour has deeply upset me. i feel betrayed and angry. but i am trying to let go of those feelings towards her. i have sent her an email invite to a braai (BBQ) that colin and i are planning. i have to learn to let go of all this hatred, this anger that i have inside me and i am starting with my sister. even if i dont get a reply, at least i will know that i extended the olive branch. i attempted to rekindle some kind of relationship.

i have also started going for daily walks around my neighbourhood. not only is this good exercise for me, but it helps my cabin fever and is a great form of meditation. just wish i could go running. so, as always after some bad times, i am trying to implement some changes, trying to realign my brain, my attitude, my thinking. i am going to be sick for a long time still. it is not a straight road, but i am strong enough to deal with the set-backs and i will eventually get better. what is important to me is that i enjoy the now, this now where i am fine. then i can 'store up' the good times, like dinner with friends and having fun with colin to get me through the bad times. i keep getting ahead of myself, but i must remember that things will get difficult again. i will get sick again. i just have to be prepared for it.

now i am ok but, i was pretty sick last week still and had really awful spasms on saturday, 1 march where i was vomiting really violently. this was very upsetting for me as colin and i were supposed to be having dinner with his dad and step-mom. i gulped down a xanax and got dressed ... making sure i brushed my teeth. i was determined to go. i wasnt going to let this bloody little AVM dictate my life! i did go, but had to be taken home early because i became sick. at least i tried.

my convulsions have changed slightly ... there is a shift in my brain and i can feel the pressure and the crawling, i can feel the nausea building, the disorientation recurring. my body is not my own ... this i am used to, but when i experience new symptoms ... this is scary. what if things are going wrong?! what if i am going to die?! OR what if my brain is healing? - let's focus on that one. as my blood finds new pathways to navigate, as my brain learns to function in a different way to how it has always functioned it is inevitable that i will experience both positive and negative physical reactions. my brain is still learning, it is still healing. i have to be 'patient'. fuck, i hate that word. as if being 'patient' for one year wasnt enough! but it wasnt, and no amount of complaining from me is gonna change that.

so, i'm trying to toughen myself up ...no more crying and pity parties, only positive actions. attempts at positive thoughts (lets see if i can do it). i am still trying to be as social as possible and have been seeing friends and really trying extra hard to stay in contact with people. i am waiting to start doing some proofreading work for a publishing company and until then i am going to continue to walk, suntan, swim, read, watch, laugh, talk, love, live.

and then ... i am going to come off this bloody clonazepam. BUT i know that i have to be in a very strong mental place before i attempt that again so i am going to see a psychiatrist on monday, 10 march to try and come up with a way of weaning me off it sloooowly.

i'll let you know how the appointment goes ... ;-)

PS. colin and i will hopefully have a car within the next month or two. fingers crossed!

Bang!

2008-02-22T01:17:00.005+02:00

Monster

i had a fairly good weekend. on friday, february 15 i went to have a picnic and watch an open-air production of shakespeare's "merchant of venice". this was done in a beautiful park called maynardville. i struggled a bit to watch the whole play; eyes blurring, head and neck aching. but i still enjoyed it. i always love maynardville. then on sunday, february 17, i went to an open air concert at kirstenbosch. i danced and drank wine to the rudimentals and had a great time (and now i just realised that i deleted the awesome photos from that! FUCK! FUCK!). for a while i forgot that i was sick. i was so happy drinking and dancing with colin, especially dancing. just like a normal person! just like a normal couple! god, how i want us to be a normal couple again!

i have also still been doing work for my uncle and making some money, plus i got a job proofreading two books. unfortunately the publishers think i am a 'professsional' - HA! i am a bit tense about this as i dont really know what i'm doing, but i'll have to wait and see what happens.

BUT i have also had some of the worst convulsions ever lately, after feeling so good for 2 weeks after i went back on the clonazepam. saturday, 16 february when colin was moving in i started having convulsions (great timing!), fast ones. crying, grunting in pain. "i'm sorry mommy! make it stop! i cant do this anymore! it hurts! i'm scared! why is everything so ugly? so bad? why is my sister being so mean? it hurts! it hurts!" tuesday, february 19; i was shaking like a rag doll, i felt my muscles would tear, my head would implode and my stomach was spasming so hard i was vomiting for about an hour. i havent been feeling good recently. my head is sore, my ears feel blocked and painful. i have muscle spasms and feel dizzy and weak. i cant sleep. i cant fucking sleep!

AND THEN colin and i had a fight this evening and i had another crazy fit. i think i am going mad. all i wanted to do was bash my brains in ... i jumped into the swimming pool fully clothed, howling; i wanted to dash my brains out against the side of the pool, but lacked the courage. then my mom took me out of the pool and i ran into the side of the wooden 'wendy house'. i felt manic, unstoppable ... all i wanted was to hit my head till i was dead. why cant this fucking thing just explode or disappear?! i felt i couldnt take anything anymore. i couldnt keep it in. i couldnt do it anymore. i was so hopeless, so angry, so frustrated, so crazed that i didnt want to live. i just wanted it all to end. i am so sick of having to be careful about everything i do. i am so sick of having to take medicine. i am so sick of not being able to sleep. i am so sick of being reliant on others. i am so sick of feeling guilty. i am so sick of trying to keep myself going. i am so sick of trying to use 'coping mechanisms' of 'staying positive'. fuck that! i cant do it anymore. i am so sick of feeling guilty about my behaviour. knowing how it must upset my mother, especially with my sister being so psycho at the moment too. i fear for my sanity. my head hurts where it hit the 'wendy house'. i dont want to take the drugs anymore. i dont know what is happening to me but it is terribly depressing to get sick again after i had been doing so well. i cant see the end. i am torturing everyone around me including myself. i wish i could stop it. i am very hurt and angry about my sister's actions. the feelings churn in me every day. my guilt, my burden, my pain, my anger, my frustration, my hate, my depression churn inside me every day ... just below the surface - barely under control. i sit in the house, trapped ... trapped ... trapped. i am going mad. i wish i wasnt. i wish i could deal with this 'properly'. i wish i wasnt so crazy. i have nothing left, no more energy, no more spirit to go through anymore of this. i dont know how im going to do it. i know i scared colin this evening and i feel so bad. i wish i could make everything right. i wish i could just be better or die ... i dont wanna be SICK anymore. i cant take it. i hate what it is doing to me, the person i am becoming, and i hate what i am putting my loved ones through. i wish i wasnt a crazy bitch. what is wrong with me? what is happening to me? i have no control. i dont even know what i am feeling anymore, all i know is that it is ugly and makes me tired. makes my head go round and round till it spins off. i just want a good fucking night's sleep! i just want to be better! why me? i cant do this! i cant! and it is killing my relationship with colin. it is hurting my mom. i hate being so dependent. i try to organise to go see friends, be social. it's a 'coping mechanism', something 'positive' in my life and even that is difficult. everyone is busy. i get sick. i dont have a car. i have had another breakdown. i am raving. but right now i think i should go back to bed where colin is quietly, patiently waiting for me. i nearly drove him away too with my madness, my neurosis.

i wish i could stop what is going on inside my head.

Anniversary

2008-02-12T15:54:00.000+02:00

one year, one year, one year. i'm half-way, half-way, half-way.

yes ... it is indeed the half-way point for me. exactly a year ago today i was in a taiwanese hospital in pink pyjamas with a stereotactic head frame screwed onto my skull, post cerebral angiography and waiting to be called for the last part of my gamma knife radio surgery - the actual radiation therapy.

my memory is so vivid and yet it feels like a lifetime away. although i am still very much aware of 'the little bugger' squatting on my brain stem, limiting my life and giving me spasms. this is supposed to be the turning point, now i should really see some improvement. well, i have already made drastic steps forward in my recovery as well as being reigned back a few times by my brain when i have gotten over-excited and overdone things.

right now? i am still pretty housebound, but mainly because cape town is not like taipei. i cant just catch a taxi to get around. i have found myself desperately trying to make contact with old friends, trying to organise outings and just generally trying to avoid the anti-social behaviour that i was exhibiting in taiwan. i know a lot of people in cape town, but i dont have many friends. i am finding it extremely difficult to build a social life for myself. A) because i have limitations as to what i can do, B) because i dont have my own transport and C) because cape town people are busy, busy, busy - there's always an excuse as to why they cant do things - sometimes there's not even a reply.

i know that my feelings of loneliness are compounded by the fact that i sit at home by myself all day as opposed to having to go to work and i know that i am sounding bitter now. but i am starting to get frustrated ... i am trying my hardest to get out and do things, to rejoin the human race and avoid becoming lonely, anti-social and depressed, but my efforts are constantly being thwarted by flakey people who cant make decisions and change their minds at the last moment. for example, this last weekend i had plans for friday night, saturday and sunday. i ended up staying at home the whole weekend because i either couldnt get a lift somewhere or people cancelled. thank god i had colin to keep me company!

but i mustnt bitch. it is noone's fault that i am stuck in this predicament. everyone else has their own busy, busy lives to lead. so i'll just stay at home and try to keep myself busy.

PS. i would like to make a formal apology for the rampant self-pity and bitterness exhibited in this post - shame on me! ;-)

Portfolio

2008-02-11T16:53:00.000+02:00

My name is Sue Harker. I am a 27 year old South African female. I have no formal training in photography, but it has become a passion of mine over the last 2 years. I spent 3 years in Taiwan from November 2004 to October 2007. I taught English in Taiwan until I became ill in November of 2006. I underwent brain surgery on February 12 2007. It will take me 2 years to recover, so I am currently halfway to a ‘clean bill of health’.

All the photos in this collection were taken in Taipei, Taiwan.

New Eyes

After my surgery I employed a Phillipino woman, Dina (who can be seen in photograph no. 9) to look after me while I recovered. In April of 2007 I was strong enough to attempt short walks around my neighbourhood, accompanied by Dina. I soon began to take my camera along on these daily walks because what I saw amazed me. I had been housebound for 5 months and the neighbourhood that I had lived in for 2 years suddenly looked completely different. I was actually looking at the world around me instead of running through it. I was seeing everything with new eyes, a fresh mind. People fail to see the fascinating detail in the ordinary, the everyday as they are always too busy running somewhere else.

Taipei is a chaotic city; full of dirty nooks and crannies, ugly buildings awash with grime, grey cement and green foliage, tiny alleys piled with garbage. It is a city alive with texture and form. This collection is an attempt to portray the beauty and the strangeness inherent in the ordinary with the use of close-up shots taken from different angles to challenge the eye. It is also an attempt to document the oxymoronic tableaux of Taipei, the combination of city and nature with a hint of the absurd. The intrusive wires, human clutter and skew angles of the photographs are shown on purpose in an attempt to truly portray this gritty, lopsided city. None of the photos were staged I just shot what I saw. I didn’t want to create ‘studio perfect’ images I wanted to portray reality in all its ugliness. I wish to confront the audience with inexplicable images that need to be closely studied and sometimes cannot be fully explained. This is how it feels to be a foreigner in Taiwan, some things are just bizarre and you learn to accept that sometimes you don’t know or understand what is going on.

Life is not perfect. Reality is messy. Cities (especially Taipei) are ugly. Humans are slovenly. But if you look with new eyes, the chaotic and the ordinary become breathtaking.

One

Two

Three

Four

Five

Six

Seven

Eight

Nine

Ten

Eleven

Twelve

Thirteen

Fourteen

Fifteen

Sixteen

Seventeen

Eighteen

Nineteen

Twenty

Twenty One

Twenty Two

Twenty Three

Twenty Four

Twenty five

Twenty six

Rewind

2008-02-10T12:54:00.000+02:00

New Eyes

the last time i wrote i was going nutso thanks to clonazepam withdrawal and had decided to push on through the physical and psychological rollercoaster. i did not decrease my dosage on thursday, january 31, but i did make two appointments with two different psychologists. my first appointment was with a woman on saturday, february 2. this was going to be an interesting experience, i had never been to a psychologist before. some people swear by them, others think it is a waste of time ... what would i decide?

well, after having more painful convulsions and crying fits my first decision was that i was going back on the bloody clonazepam. mentally and physically i wasn't ready for the withdrawal symptoms, especially as the increased convulsions posed a serious threat to my physical health. so by friday, february 1 i was back to taking 4 mg a day and now my body and my brain seem to be balanced out again. i have decided that i will wait until my convulsions and spasms have stopped completely before i try to wean myself off the clonazepam again. and next time, i'm going to take it sloooowly. at least i'll be prepared. i have found some useful and enlightening literature that suggests that doctors know nothing of the dangers of benzodiazepine addiction and withdrawal and really have no idea how to help a patient wean themselves off these drugs. i think i agree with the literature ...

and my decision about the psychologist? she was a lovely lady, who listened to me talk (basically repeating what i have written on this blog and told other people a million times), made random comments, which i assume were meant to 'comfort' me or something?! and then told me that our time was up. i didnt walk out of there feeling any better. the only real weight lifted off of me was the R400 out of my pocket for the session. i am sure that if i saw her once a week for a year or so she could really help me, but then she would have to counsel me for the financial stress caused by her rates as well! ;-) i cancelled my appointment with the other psychologist. i find that my blog is an excellent psychologist and it doesnt charge me. perhaps i will go back to this lovely woman in the future, but right now ... i feel independent again ... i am doing quite alright by myself thanks!

my return to form has come about because of some positive changes in my life. firstly, i am back on the clonazepam - that is a positive for now - at least i feel i am able to deal with life in general and am not suffering from derealisation/depersonalisation, insomnia, anxiety etc etc ... jeez, this drug is HECTIC! if a doctor ever tries to prescribe it for you - DONT TAKE IT!

other good news is that i have been doing some work recently. i am basically retyping, proofreading and just generally 'improving' some documents for my uncle in England. he runs his own company and is paying me very well for my work. not only has this work given me a bit of a self-esteem boost, at least i feel like i am doing something constructive and am earning some money! (which means that i can start helping my mother out financially - i hate mooching!) but this little bit of work experience will also look good on my CV (a glowing letter of reference from a UK-based company?! pure gold in south africa! ;-) and while we're speaking of work ... colin has also found a nice job! (teaching english - ha ha ha) this is a huge positive in my life as it means that colin is now financially stable and will be staying in south africa with me - hopefully till i get better. YAY! he will also be moving into my sister's old room (she obviously doesn't know ;-) at the beginning of march. i know it will be a bit weird for him living with my mom, but it makes me very happy to think that we will be living together again. we needed to live apart for a while and we had a good break. but now it is time for us to build our lives together. i believe we could build something beautiful.

another positive experiment for me was putting together a serious portfolio of my photographs and taking them to a gallery. i saw an ad on a website looking for new, young, south african photographers and decided to reply. i love taking photos and playing around so why not take a chance. i went to the gallery on tuesday, february 5. very highbrow place, very professional, stylised photography. i left my CD of 26 odd photos with them, but i have no expectations. i like my photos, but they are not professional. i am glad that i did it though. it was fun to come up with a brief/theme (New Eyes) and then try and choose my best photos. i will post the brief and the photos onto this blog. i havent heard from the gallery yet, so who knows? ...

in this moment, i am content ... i am making a little bit of money, i am expressing myself creatively, i am trying to see friends and colin is lying next to me listening to music while i write on my blog. it has been hot and sunny in africa, but today it is cool and rainy.

Anniversary

2008-02-08T11:52:00.000+02:00

as always this day must be marked. it is over a year ago that i quit smoking and was diagnosed with an AVM on my brain stem. exactly 1 month and 1 year ago, in fact. i have come off some of my meds, my health has improved dramatically since then. i can even have sex once in a while if i am feeling ok and i take a xanax ;-). but i still have convulsions, i still cant walk too far, do too much, stay out too late, drive a car, dance. i am still NOT normal.

mentally and emotionally i deal with my sickness, my confinement, my seperation from the 'normal' by writing on this blog and trying to keep myself busy. i try to focus on the positives in my life - being home in cape town in summer is definitely one of them, colin's unwavering love and support is another, my family is another ... i have many blessings to be thankful for. and i feel more mentally stable now than i was in taiwan.

but i wont lie, i am getting fucking impatient!

PS. i also started this blog 10 months ago today!

Gimme

2008-01-30T03:18:00.000+02:00

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Withdrawal

2008-01-30T00:28:00.000+02:00

Walls closing in

so i am coming off the clonazepam. my doctor warned me that it would be the most difficult of all my meds to come off. it is a benzodiazepine, along with xanax and valium and is therefore highly, physically addictive. there is the danger that coming off the drug can cause seizures, but there is a whole lot more to it than that ...

i have been taking 4 mg a day for over a year now and it is recommended that you dont take this drug over the long term, but it was prescribed to me and i thought it was helping. now i want to stop taking it. my doctor suggested that i reduce my dosage by 1 mg every week. ok ... i started taking 3 mg a day on thursday, january 17 and things were going well for the first week, on thursday, january 23 i took 2 mg for the first time. that night and the next day i started having weird spasms. similar to my normal convulsions except that there was no warning with these and they were fast and scary, often starting with painful neck contortions. the other difference was that i experienced terrible depression and terror during these convulsions. now, i normally find my convulsions scary and sometimes i cry while i am convulsing, but i am crying for a reason. i am crying because i am frustrated, angry that i am still sick. but now i cry out of horror, depression.

i have started experiencing crippling feelings of depression where i dont want to see anyone, dont want to do anything. i cry uncontrollably for no real reason. i feel terribly anxious about life ... every little thing that happens, every little problem becomes a huge cause of stress, depression and, of course, rivers of tears. i am crying as i write this. i am just so fucking sad. sad about what?! oh, i have many things to feel sorry for myself about. i still dont have a job, i am sick and stuck in my mother's house like a child, i am intensely lonely, my boyfriend seems lost and directionless - i am at the mercy of whatever takes his fancy. one moment he is leaving for south korea and i must mentally prepare myself for that, next moment he loves south africa and is going to get a job here, now he wants to stop drinking and spend time with me and then he wants to party with his friends and maybe fit me in somewhere in between. all i want is some stability in my life. people i can depend on.

anyway, this wasnt meant to be a bitter rant about colin. he is dealing with his own demons and it is not fair for me to judge him so harshly, but i have to be honest about how i feel, even if what i feel is 'irrational' or 'unfair'. i just want him to be happy and i want him to make up his bloody mind!

BUT back to the real topic ... all this craziness that is in my head, mood swings, depression, crying fits, anxiety, spasms, insomnia is all thanks to the clonazepam slowly leaving my body. i am the first to admit that i am not the most emotionally stable person on the planet, but these recent feelings. this uncontrollable hopelessness, sadness; this is not me. i am usually able to lift myself out of my moments of weakness and depression. kickstart my optimism. i can enjoy the small things in life like reading a book or lying in the sun. having the house to myself and just relaxing, but now i struggle to find these small pleasures through the haze of anxiety and the rain of tears.

so, things are not going well ... the honeymoon period is over. all my lovely cousins, aunts and uncles have gone back to england. holidays are over and now reality comes crashing down and i want to curl up into the foetal position. unfortunately my clonazepam withdrawal has made me less able to deal with the stresses of everyday life. you see, clonazepam, besides being an anti-convulsant is also an anti-anxiety medication. it is a psycho-active drug and now it is messing with my head. i have been taking xanax to stop the spasms, but i dont want to replace one benzodiazepine addiction with another. so now i try to rest more, i try to relax. i take herbal remedies in an attempt to soothe my frazzled nerves. and if i cant sleep, i try not to let it worry me.

my mother helped me realise that my spasms are being caused by my anxiety attacks and my depressive crying fits so if i can try and calm myself down then i can decrease the amount of spasms i am having. the other thing that i have decided, with my mother's help (she is a nurse) is that i need to come off the clonazepam much more slowly than my doctor suggested. so, i went back up to 3 mg a day and have been taking that for about 2 weeks. i might decrease my dosage on thursday, january 31 by 0.5 mg. but i am still feeling fragile, i had a crying fit tonight (and obviously also insomnia ;-), but at least now i can recognise what is causing all these emotions and this makes it easier to understand them and not let them worry me. at first i believed i was going crazy, now i know it is just clonazepam withdrawal.

that thought comforts me and i need comfort. i feel like a helpless child a lot of the time. i just want someone to hold me and make all the horrid things in the world go away. i just want someone to cradle me, love me and make everything okay. wave a magic wand and make me better and i will be yours forever. this is a very alien feeling for me as i have always been very independent, individualistic. of course i need people and rely on them for comfort, but i used to prefer to sort out my problems by myself. no help needed, thank you! now i have become one of those irritating people that whines about their problems and demands constant attention and reassurance. *see this blog* ;-)

i need to see a psychologist.

Haiku

2008-01-25T00:59:00.000+02:00

Insomnia

Why can i not sleep?
Skittering thoughts through my head
worry me awake.

Lost

2008-01-24T14:02:00.000+02:00

so ... what's been happening? i hear you cry. quite a lot really. the week after my pearly beach trip i was a mess. i spent the whole week with colin (alternating between his house/hovel and mine), which was fantastic. i slept a helluva lot, but when i was awake i just cuddled, chatted and watched movies with colin. we hadnt spent much time together, just the two of us and that week from monday, january 14 to saturday, january 19 was great. it gave us a chance to discuss a lot of things and just to enjoy each other's company. it was like living together again and it felt good. after colin left my house on saturday, january 19 i was so sad. i felt lonely and missed him as soon as he was gone, i missed that feeling of togetherness, comfortableness that comes only when you live with someone. colin came back and stayed with me on monday, january 21 and tuesday, january 22 again so we weren't apart for too long. and now i am back into the routine of being on my own most of the time and i dont mind it too much.

i have, however, been trying to convince colin to move into my mom's house with me. my sister has moved out (in a dramatic fashion - there was another blow-up on tuesday, january 15 and i now dont even want to be associated with her. she is psychotic, lost to me forever.) so her room is free. colin is miserable in the house that he is staying in for many reasons and the rent for my sister's room is a lot cheaper plus we get to live together again. i feel a particular urgency in this matter now since colin is leaving south africa. it is pretty much impossible to find a job and support oneself in cape town and colin wants to save a lot of money so that he can go back to studying. so, he wants to go and teach english in south korea as soon as possible. why should he be stuck in south africa just because i am? he also has a life to live and he is healthy and free to live it. if i were healthy i would go to south korea with him (i am struggling to find a way of making money in cape town), but i cant and this makes me very sad and frustrated.

we have spoken about plans that we could make. he could save for both of us and i could join him when i am better, BUT i dont know when i will be better! AARGH! i hate long distance relationships, i dont believe in them! but i am willing to give it a try with colin. if i am lucky i will recover early and be able to get a 'clean bill of health' before february 2009, but at the moment i am still sick. i still have convulsions, i still cant do too much or walk too far. my recovery is agonisingly slow; following an incredibly frustrating 'two steps forward, one step back' dance, which depresses me (eg: i cant have sex anymore as it is still causing convulsions!). although, GOOD news; i am weaning myself off the clonazepam at the moment. one less drug in my system is always 'two steps forward ...'

but i can just imagine myself stuck in cape town, lost, not making money, getting more and more depressed and lonely while colin is far away, making money and moving forward with his life. it's not that i dont trust him ... i just know how easy it is for two people's lives to drift apart, how quickly it can happen. i feel helpless, hopeless, trapped, lonely, scared, uninterested in life. i have been making a huge effort to see friends and do things, to stave off the emptiness and depression, but now i need to let it roll over me for a while. i dont want to see people. i dont want to make plans. all i can see is my sickness. i cant imagine my future as a healthy person. when people ask me, "what are your plans for the future?" my answer is, "i want to get better."

but i am coming to terms with what has to happen. i just wish colin would spend his last few months in south africa living with me in my mom's house. and once i am out of this particular funk that i have fallen into there are things that i can do. i need to start focusing on my own future. i have been sending my CV off for any 'work at home' job opportunities ... none of which have been successful. but i am downloading an editing/layout program, which i am going to teach myself how to use. i have a test for freelance editors that was sent to me by one big publishing company. i will complete that test when i have learnt the program and hopefully i will be able to get some work from this publishing house. i have offered my services to other publishing companies and magazines and none seem interested. even if learning this new program doesnt help me get a job, it will at least help me transform this blog into a book. of course my story is not finished, but if i cant make money this year then i might as well be productive in designing my book.

so my future? (it scares me) i hope i will recover and be able to join colin in south korea. i enjoy teaching english and i enjoy travelling. i want to make back my savings and then i want to travel asia and europe teaching english. maybe i will do a correspondence course to get my teacher's diploma and become a real teacher in what ever country i decide to settle in. or maybe i will choose another career path, another avenue of study. all i know right now is that; i want to get better, i want to write my book, i want to travel and teach, i want to find a country i can settle in (i cant live in south africa) and i hope that i can do all this with colin. so, i am feeling anti-social, depressed and fatalistic, but i know i just have to keep on trying ... things will get better. PLEASE.

Travelling

2008-01-20T14:01:00.000+02:00

11 January - 13 January 2008

Sunset

the drive to pearly beach takes about 2 hours. i sat in the passenger seat while my mom drove and the dog stretched out on the luxury of the backseat. grrrr.... the drive was beautiful and brought back many childhood memories, but i struggled. i dont react well to the motion of a car, especially if i am sitting upright. i get terrible nausea, earache, headaches and neck spasms so the 2 hour drive was really hard on me and when i did finally get out of the car at pearly beach my legs just collapsed under me. i felt terrible, but we had arrived just in time to witness a beautiful sunset and my grandparents, two uncles and one aunt had started a lovely braai (bbq). i popped another xanax (i had already taken one for the long drive) and stubbornly took photos of the sunset and sat outside chatting and enjoying the braai and my family's company. i refused to let my brain mess up my weekend away.

our family house is called linga longa and it really does make you want to linger longer, never want to leave. the house was built by my grandparents and has enough beds for 8 people, which makes for a perfect, party holiday house. there is a view of the ocean and the beach is a short walk away. walking through the front door floods my mind with carefree childhood memories and dissolves any stress and worry that's attached itself in the real world. linga longa inhabits its own dimension in time and space, and that dimension is pure calm. i needed this calm, this healing very badly, but unfortunately i didnt get it.

i was horribly sick from the drive the entire weekend. i did have a lovely friday night braai with the family and then made it to the beach the next day for a picnic thanks to xanax. but after the trip to the beach i just went downhill. my grandfather wanted to take everyone out for dinner that night, saturday, january 12. i had a sleep after the beach, popped another xanax and went along in the car. i managed to eat my starter before i started having neck spasms and my mom had to drive me back to linga longa crying. "i just want to be normal! i dont want to be sick anymore! its not fair! im tired! i cant do this anymore! i want to go home!".

i was shattered. i didnt feel calm or relaxed, in fact i was depressed because i couldnt enjoy the calm dimension of the house. and all my childhood memories just served to remind me of how immobile, how weak, how ungainly i am. i couldnt walk down to the beach, i couldnt play in the sea, i couldnt go for long walks along the beach by myself. it was horrible. all i could do was lie in bed and convulse, crying like a baby. and what made it worse is that my sickness upset my family, ruined their evening, so lets add a little bit of guilt in there for good measure.

we had a brunch on the sunday, january 13 and that was nice. i was feeling a bit better after 12 hours sleep and loads of xanax, but i was also very glad that it was a cloudy day. my mom and i could leave early. it was organised that i could lie down on the back seat for the return journey and i slept most of the way.

Coming back to Cape Town

so, the weekend was bittersweet. in one way i was happy to see my family and be surrounded by such beautiful countryside, but the travelling was too much for me. the trip just brought me back to reality, reminded me of how sick i still am. i had been running around drinking and acting like there was nothing wrong with me and then i went too far and 'the little bugger' (my AVM) started kicking around in my brain, "dont get too excited sue! you're still sick! you still have a long way to go!" NO - FUCK OFF! but 'the little bugger' doesnt listen to me he controls me. he controls my life. he stops me from being me. i am NOT free! and the only way for me to protect myself from complete depression is to convince myself that i dont want to do all these things like dancing, drinking (i have stopped drinking again) and partying or to remove myself from a situation where i have to watch others doing something i enjoy like hiking.

the more i taste of real life, the more my bonds chafe. how i hate it.

Boyfriend

2008-01-19T15:30:00.000+02:00

1 January - 10 January 2008

6 February 2006

wow ... there is a lot to write about, but i will start with the big news that colin and i have gotten back together. (TA DA!) yes ... after even making it my new year's resolution to have no contact with him, i still gave in. what can i say? i am addicted to him, i love him, i am a romantic and ever-hopeful. we are slowly working through our issues and trying to make future plans. after spending so much time with my family i have realised that i want a family of my own one day. i am 27 and i dont want to waste anymore time. i want a partner who is committed to me and that i can see myself having a serious future with. i think colin could be that partner. he is trying very hard to grow up, find a job, etc etc and i know that he is loyal and loves me very much. i also need to let go of some of my own insecurities and judgements for our future relationship to work. so there is a lot of work to be done on both sides, but i think we already have the most important ingredients and that is love and determination.

HOW? did it happen you ask ... well, after a quiet new year spent with my mom's family i went to go and stay with an old friend of mine for 2 nights, from tuesday, january 1 to thursday, january 3. he lives in another city, but was visiting cape town on holiday. it was fantastic seeing him and he was very patient listening to all my problems with colin and my sister, but we also had a lot of fun too. on tuesday, january 1 colin sms'ed me and wanted to chat on skype. he had been to some big party for new years and was feeling miserable the day after. i spoke to him on the phone for ages telling him that either we must work together as adults to make our relationship work or that we must just not be in contact with each other. yes, he wants us to work together, he loves me and he wants us to get back together. that was all i needed and i was happy. i know we can be good together.

i was very busy over the next few days seeing family and friends, but colin and i managed to have a few good talks over skype about what we felt needed to change in the relationship. now we just really needed to see each other. i was going out with my cousins from england on their last night in south africa on sunday, january 6. colin was spending time with mutual friends of ours from university who were also visiting so we decided to meet up at a pool bar. it was a bit weird as my attention was being pulled between my last chance to see my cousins, my first time seeing 2 old friends in 4 years and seeing colin for the first time since sunday, december 16, almost a month! it was disconcerting seeing colin at first, almost like looking at a stranger and then he just came up to me and held me. we stayed like that for a long time, holding each other and kissing in the middle of the dingy pool bar. we didnt talk too much that night, but it felt good, it felt right to be back in his arms.

Kalk Bay
the next day, monday, january 7 i went with colin and some friends to a lovely seaside area of cape town called kalk bay. again it was just a beautiful day where i got to chat to friends and colin was so affectionate and loving towards me. he was just so happy that we were back together and so was i. it was a romantic day for us (i'm a sucker for romance ;-) and i spent that night at colin's house, just the two of us. we talked and held each other, breathed each other in with a new appreciation, gorged ourselves on each other's company and a love, a bond that felt stronger than ever. after being through such hell and tormenting each other so much in taiwan. after living together for 2 years (being together for almost 3 years - may 2008!) and sharing so much joy and so much horror. after sharing every intimate detail of our daily lives, our thoughts, our feelings, our bodies, our histories, our futures, and then almost losing it; it was just ecstasy to have the other person next to you again, to be with the other person. how could we have thrown that feeling away?! impossible. oh, and i had sex (and my first orgasm!) for the first time in over a year! HOORAY!

i spent the next few days with colin and friends, but i was starting to take strain. i was feeling tired, sick, stretched out. i tried to go out on tuesday night, january 8. i drank some champagne and desperately tried to ignore the pressure in my brain and the jitteriness in my muscles, but my brain had had enough. as we got into the car to go out i started to have terrible neck and stomache spasms, which really upset my friends. i wasnt going anywhere. colin stayed with me while i endured horrible convulsions for about an hour. i dont like my friends or family seeing my convulsions because i know that it scares them. i feel like a freak, a monster, while they try their best to comfort me and not freak out. i am comfortable with colin and my parents being with me during my convulsions, but i dont want to subject others to them. they are ugly, terrifying and i dont want people to see me like that; moaning and thrashing, shaking and contorting, stuttering and crying. a thing possessed: that is NOT ME! i wish it wasnt me!

so, after popping a few xanax and getting some sleep i managed to spend a nice day, wednesday, january 9 at colin's house with some friends. my mom picked me up that evening and i spent the rest of the week at home. i needed to rest because i was going to our family beach house in pearly beach that weekend. my mom and i were leaving at 5pm on friday, january 11. i said my good byes to my friends and my rediscovered, lovely man, colin.

Anniversary

2008-01-12T16:57:00.000+02:00

11 months ago today i had a stereotactic head frame screwed onto my head and underwent the most difficult day of my life with the ultimate goal of preserving my life. now i am almost a year away from that day and yet it is still so clear in my head. i still cry sometimes when i think about it and marvel at the fact that i have survived 11 months. i dont know how i did it, or continue to do it for that matter.

i recently watched a video of the convulsions i had the night before my gamma knife radio surgery, sunday, february 11 2007. my south african doctor asked for a copy of this video and i realised that i had never watched the whole thing so i decided that it was about time i faced the horror images of what my AVM does to me. it was terrifying ... i barely recognised myself. truly a scene, 22 minutes long, from the exorcist. i had nightmares of being chased by contorted, white eyed zombies. every single one of them was me. but i am glad that i watched it. i have to face these scenes head-on, no protection. how else will i ever process and accept all that has happened and is happening to me ...

Sister

2008-01-11T13:57:00.000+02:00

30 January 2007

on sunday, january 30 i organised to go to a music concert in the kirstenbosch botanical gardens with my sister and her boyfriend, my two cousins from england and another old friend of mine who was visiting from england. my sister's boyfriend has a bakkie so it was agreed that we would all meet at my mom's house at 3 pm and then pile into the boyfriend's bakkie to go to the concert. another two friends of mine surprised me and joined us later. the weather was beautiful and we were having a lovely time. everyone had a picnic and a few drinks.

as soon as the concert was over my sister and her boyfriend left and said they would wait for us at the bakkie. they wanted to leave early and avoid traffic. the rest of us wanted to just sit and relax for a bit longer, enjoy the surrounding beauty and each others' company. my friends and i then decided that we wanted to go out for a few drinks. "we're coming with you!" was my cousins' reaction. so, i sent my sister an sms telling her that everyone else wanted to go out and that her and her boyfriend could go home if they wanted. a while later i got a furious phone call from the boyfriend. "where are you?! we have been waiting for 15 minutes?!" it turned out that my sister had not had her cellphone with her and had therefore not got the message. ooops! the boyfriend hung up before i could apologise and the rest of us went out to have a bit more fun.

i arrived home in a fantastic mood. i had been to a bar for the first time in ages and had had loads of fun with old friends and my lovely cousins. then i heard my sister screaming as i opened the front door. she was having a huge fight with my mother. i got dragged into the fight and was told how rude me and everybody else had been to the two of them ... blah blah blah. it was all petty little things that were being brought up and i was angry that first of all my lovely night had been ruined and second of all that my sister's horrid little boyfriend thought that he had the right to lecture me. then the final straw; my sister turned to me and screamed "you dont know how hard my life has been this year!" excuse me?! i saw red and slapped her in the face. how dare she come and try and tell ME, of all people, that HER life has been hard. what about my fucking life?! she has no idea how difficult life can be! and she has no idea what i have been through because she has never shown any interest in me or my life.

her boyfriend and her stormed out of the house that night and have not returned. they did not come to our family new years celebration and my sister did not come to my grandfather's 80th birthday on saturday, january 5 (which was so much fun that it lasted 11 hours - i LOVE my family! ;-). she was the only family member not present. she has completely cut herself off from her family (who are all now furious with her and her ridiculous behaviour) and has broken my grandfather's heart. she has broken my heart too. i saw what was coming, i spoke to her to try and avoid it. all i ever wanted was to have a sister that i could get on with, rely on, a sister who could be my friend. but i have tried too many times now. i will always nurse the hope that she will come to me one day and apologise, try to be friends. i just hope that she doesnt leave it until it is too late.

Anniversary

2008-01-08T13:33:00.000+02:00

today is a day of many anniversaries.

i have been an entire year without cigarettes today. woohoo! i still have quite a few friends that smoke and even though i still get terrible cravings when i see them smoke, to the point where i almost grab the cigarette out of their hand so i can have a drag, i am also incredibly happy that i dont smoke anymore. that coughing, smelly, yucky part of my life is over and i feel healthier and cleaner for it. i know that i will never go back. it is the freedom of knowing that i am not controlled by these little tubes of tobacco anymore which feels so good. i dont have to run to the shop when i run out, i dont have to worry about taking boxes with me when i go away, i dont have to go and stand outside and puff on a ciggie every half an hour. those horrid little things have no control over me anymore. and i smell better too ;-).

it has also been a year since i was diagnosed with an AVM on my brain stem and i started this blog on saturday, april 8 2007, which means that i have been vomiting my life story and my thoughts onto these pages for exactly 9 months. this blog is my therapist, my diary, my confidante and eventually, hopefully my book.

Continued

2007-12-28T13:11:00.000+02:00

Christmas

two and a half years together can't just be extinguished like that so of course the saga of colin and my break up has been continuing. i spent 3 days crying my eyes out and ranting to anyone who would listen. but it felt good in a weird way, i was purging myself of all the negative feelings, all the hurt and depression that came with our relationship and that always comes after a break up. i didnt hear from colin for 3 days. i thought i was well on my way to getting over him already.

then he phoned on saturday, december 22. our mutual friends wanted to see me. i didnt answer, mainly because i was busy talking to other friends on the phone about the break up. eventually he left a message saying he would give these friends my phone number and they could call me. yes, if they had really wanted to see me they would have done that right at the beginning of the week! (they never called.) i thought about it as rationally as i could and decided that i should call and speak to colin just to clarify that he did know we had broken up and just so i could get some closure. "colin, you do know we've broken up, don't you?"
"yes."
"is that all you have to say after everything we've been through?"
"well, i dont want to break up." (HUH?!)
"but you ignored me, acted like you didnt care."
"i was very angry and i have been angry for the last 3 days."

eventually, inevitably the conversation turned into a fight where he insulted me and i hung up the phone in disgust. i had been grieving for the last 3 days and then he tells me he wants to come and visit so we can try and sort things out. how could he not understand that after the pain of the last 3 days i wasnt going to just say "okay!" and let him waltz back into my life again.

but i still loved him and all the wonderful qualities that he has. so i sent him a message suggesting that we not fight anymore and hoping that we can be friends. "yes," he agrees. fantastic! i felt much better. i had had some form of closure and even though i was still horribly miserable that things had ended between us, at least we would still be in touch. i didnt want there to be any animosity or weirdness between us. he could continue getting fucked out of his mind with his mates and i could slowly start to heal both emotionally and physically. i have to focus on the small joys i am allowed and not think about the things that i am missing out on.

then i got an sms the next day, sunday, december 23. he wanted to talk to me the next morning on skype. "maybe" i replied and i meant it. a friend and i were planning a trip to the beach so i didnt think i would be at home in the morning. monday morning, december 24 it was pouring with rain so, no beach. i could chat to colin on skype. i was over him already, i could just chat to him as a friend. i was happy with the little life i was slowly building around me, with the vague plans i had for the future. i wanted to be single. it was going to be good for me. so we chatted. i deliberately avoided any talk about our relationship although i could feel he wanted to bring it up. i was excited to see my dad's side of the family on christmas day, tuesday, december 25 and even more excited to see my mom's side of the family on wednesday, december 26.

i got an sms from colin wishing me merry christmas on the tuesday. i was busy with family and happy so i quickly replied. then i got an sms on wednesday morning, can we talk? maybe after my family lunch i replied. i had a wonderful time with both sides of my family and was very happy when all my cousins, aunts and uncles left at 9 pm on wednesday night after a 9 hour lunch. I LOVE MY FAMILY! it was late and i was tired and decided that the sensible thing would be to just leave colin until the next day. but because i still love him, am addicted to him, i called him after everyone had left. he was very drunk with some friends and he ended up insulting me again and i hung up. that was IT! no more communication between us. i couldnt take it. the emotional see-sawing was causing stress and making me sick.

this stress has been causing terrible insomnia and convulsions. i now take a xanax every night in an attempt to stave off the convulsions and get some sleep. it doesn't always work ... i actually had the most terrifying of any of my convulsions at 6 am on thursday, december 26. my mom had to sit and watch me while my body writhed in agony, pulled into deformed shapes by my brain and then shaken so violently i felt my neck would break. i was very close to losing consciousness a few times and i honestly thought that this was it, the end. i had put too much pressure on my brain and now i was going to die. i will never forget how i felt that morning; helpless, terrified, depressed, hopeless. i didnt care if i died. i was too weak to deal with my physical and emotional sicknesses anymore. i just wanted it all to end. but i didnt die and i ended up having a lovely christmas lunch that day (december 26) which was then poisoned by yet another fight with colin.

Beautiful Cape Town
i was a glutton for punishment. i had to leave the man alone, ignore him. he started calling the very next morning, thursday, december 27 and like the suicidal moth to the flame i eventually gave in and called him. we fought. i hung up. then i called again and tried to explain my feelings to him, how i wanted something, someone different for my life. we both love each other very much and are both very sad that things arent working, but it just isnt meant to be and we are wrong for each other in so many ways, but we will remain friends. i then went to the beach with a friend and had a beautiful day. was invited to have a braai (bbq) with them, but couldnt because i am still sick. AAAARGH!

this morning i woke up. i have fun plans for this weekend. lots of things to look forward to, but all i could think about was colin. how much i love him, how much i miss him, how much we have been through together, how maybe there was still a chance for us. i broke down and called him, crying. he was very sweet and told me that he was glad i had called and although i berated myself for being so weak as to call him i did get what i wanted from the phone call. a little bit of love and comfort. i still think it is a good thing that we have broken up. i am still glad that i am single. but i am still glad that we can talk.

and yet i keep singing this song to myself, "it's all just a little bit of history repeating ..."

Future

2007-12-21T10:57:00.000+02:00

Bittersweet

so, my future is suddenly looking very different from when i last wrote. physically i am still getting better and i have rediscovered some fantastic old friends who have been really wonderful to me and i have also found that a lot of people just ignore my sms's and dont seem to want anything to do with me. this is a very cape town thing to do, which i am not used to yet. people in cape town are generally very cliquey and image conscious. now if you are image conscious that means that you must be busy all the time so you have no time to make the effort of reconnecting with an old friend who doesnt have a car and doesnt go out partying. that sounds bitter because i do feel a bit hurt by the amount of people who have simply just never replied to any of my sms's. but like i said, some friends have been awesome and i am just loving my family.

i had a particularly good talk/cry with my sister about a week ago. like i have said before, we are very different people and i have felt uncomfortable being home as her and her boyfriend seem to ignore me. this really hurt me as i want to feel that my sister and i are friends and can chat about things and do things together. but it seemed to me that she wasn't interested in spending any time with me, only her boyfriend, and i had terrible visions of ending up in the future with a sister that i hadnt spoken to in 10 years! in my head i actually thought she resented me for crashing back into the house, being sick, loud and generally disrupting her pleasant routine. it all came to a head one night last week when we had some silly disagreement. i was crying on my bed and decided that i wasn't going to be pathetic about this anymore, it was time to confront my sister about how i felt (my family is not very good at showing their true feelings). i called her from the kitchen with tears in my eyes. explained to her that i felt unwelcome, lonely and that i wanted us to spend some time together, to feel like we supported each other. she also ended up in tears and we had a good heart-to-heart about what has been happening in both our lives and how we feel about certain situations. of course, i was just paranoid and she assured me that she wanted to spend time with me and develop our relationship, but she is introverted and finds it difficult to speak to me sometimes as i am quite the opposite. so, that was a huge weight off my chest and my sister has been there for me in the last few days which have been so terrible.

why have the last few days been so terrible? well, things with colin started to go rotten again. we started bickering and fighting again on friday, december 14 and it didnt stop. the final straw was when mutual friends of ours arrived in cape town. he was very excited to see them and told me on tuesday, december 18, very proudly, "I am going to the beach with them tommorrow.". i am oversensitive at the moment and felt left out. going to the beach was something that i could do and i had actually discussed with him how much i wanted to go to this particular beach, Hout Bay as i had lived there as a child. "so, i'm not invited." i said. i was accused of being negative and the fight just escalated until it was decided that we shouldnt be in contact for a while. he wants to party with his friends and a sick girlfriend just puts a real 'damper' on things ya know. i was so upset and hurt that i didnt sleep all night.

i know that i am sounding bitter already and i dont want this post to turn into a bitch session. maybe i shouldnt be writing this now as i am still very raw, but i need to get it out of myself. i need to keep myself busy, otherwise i will just crumple up into a ball of tears alone in my mom's house surrounded by workmen (yes, they are STILL working on the bathroom!) anyway, after all this nastiness between colin and i, i started to take a good, hard look at the relationship. i am 27, i have plans for the future. a life i want to build and i couldnt see colin in that future. his friends, partying, drinking seem more important to him. he can be nasty to me and make me feel shit about myself (turmoil). he has always been like this, but he also has many lovely qualities and so i tried to look past all the bad stuff in our relationship. i love him. he is my best friend. but if he can blow me off for alcohol and a party then he is not worth it. i know that i deserve better. i want a man. someone who is committed to working together. able to make compromises. someone who has compassion and love for me. someone who will comfort me when i am crying. no more fucking around! no more wasting time! i want to get married one day. i know that i am not perfect and that this year has been incredibly hard on colin as well as me and i understand that he wants to blow off steam. so we are just at different stages of our lifes right now.

on the night of wednesday, december 19 i sent colin an sms. "are you busy right now? we need to talk." we can skype in 30 minutes. okay. first he revelled in telling me what a fantastic day he had had at the beach. he had been drinking all day and was having the time of his life! good for him. he said they were having a big party at his house on friday night, december 21 and do i want to come. WHAT?! he knows i cant handle being around loads of really drunk people until all hours of the morning (and dont want to be anyway). i just told him, "look, i dont like the way things are going and i think we should just call it quits."
"oh, okay. look i am drinking with my housemate and he is waiting for me so i better go."
"okay, go back to your alcohol."
and i hung up. after all we have been through, almost 3 years of a relationship that had been wonderful in many ways and horrific in others; that was his reaction. it just killed my heart that the person i had discussed future plans with, the person who had professed to love me so much, my best friend who knew me so well could just dismiss me like an old dishrag. nothing could have solidified my disappointment in him more.

although friends and family have suggested to me that he probably didnt really understand what i was telling him as his reaction was so odd. but when he does come back to the real world and has satisfied his lust for instant, self-gratification he will realise how much he has lost. and that will be very sad.

now, of course i am a mess and am relying heavily on friends and family to help me. i feel reckless. i just want to go out, dance, get drunk, forget everything. i want to be normal. then i could deal with this break up. but being sick on top of it. that's incredibly difficult. i am horribly miserable and depressed, but i am desperately trying to make plans with friends, go out, keep myself busy. i know all this adversity will make me an even more amazing person than i already am, but right now it REALLY sucks to be me!

i feel like i have come full circle. i was 24 years old, living at home without a car, working crappy jobs to save and go to taiwan in november 2004. now, i am 27 years old, have returned from taiwan in october 2007, am living at home without a car, no job, no money and what i was hoping to be a real and profound relationship has turned into a booby prize. oh and lets not forget the fact that i have regressed to the level of a 16 year old in terms of the things i am able to do. i cant drive, i cant drink (well, okay, a little!), i cant go out. SHAME SUE! yes, i am a pitiful case.

but i am fighting that self-pity, that depression as much as i can because i am better than this! i have applied for a freelance editing job and now i just need to teach myself about editing (argh! ;-) so i can pass the test and get the job. my future is still bright. i am getting better physically, mentally and emotionally every day. i am going to work from home, make some money, recover fully and then i am going to travel, live life to the fullest, find my happiness, my soul mate, be fulfilled. but for now i need to cry ...

Now

2007-12-13T13:05:00.001+02:00

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

2007-12-13T10:36:00.001+02:00

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

2007-12-12T10:38:00.000+02:00

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

2007-12-08T11:17:00.000+02:00

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

2007-12-07T16:15:00.000+02:00

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

2007-12-07T15:04:00.000+02:00

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

2007-12-06T15:46:00.000+02:00

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.

Regulations

2007-12-04T13:26:00.000+02:00

24 October - 27 October 2007

Farewell

i had planned to just leave my wheelchair in taiwan. it would be too much of a mission to get it onto the plane and i didnt think i would really use it that much in south africa anyway. but "no, no. take the wheelchair. it doesnt get counted as part of your 25 kg baggage allowance and you will get treated like gold. you might even get bumped up to first class." said a friend of ours who had been a travel agent before. well, okay then ... if my wheelchair could get me special treatment then it was definitely worth taking along!

so, i phoned the travel agent, on wednesday, 24 october and told her that i had a wheelchair and she advised me to phone the airline. this is where things got ridiculously complicated. i phoned the airline and the woman on the other side of the phone, who obviously had NO idea what she was talking about, asked why i needed the wheelchair and how much it weighed. "but my wheelchair goes on for free? it doesnt get counted as part of my 25 kg baggage allowance." oh, oh, well she didnt know about that and would have to phone the airport, but could i please fax her a letter from my doctor explaining what was wrong with me and why i needed the wheelchair.

no problem! dr. tai had already written a letter for just such an occasion explaining my condition, but stating that i was stable and that i had medication to control my spasms. rose went down to the convenience store to fax the letter to this woman (of course, i didnt have a fax machine). the woman phoned me back to ask how much my wheelchair weighed?! she assured me that if it was under 5 kg then it could go on the plane for free. but it's a wheelchair and therefore rather large and made of metal so it weighs a lot more than 5 kg. i explained this to the woman and said that their airline policy stated that wheelchairs were carried 'free of charge' regardless of weight?! "oh, okay. i must phone the airport again." irritation was already starting to set in and i was starting to wonder whether this whole wheelchair thing had been such a good idea in the first place, especially since i only had 3 days before i flew.

the wheelchair goes on for free, that's fine. (phew!) BUT (oh no!) the airline is worried that you are too sick to fly. "but i have a doctor's letter that says my condition is stable?!"
"yes, but the letter needs to specify that you are able to travel on the exact dates of your flight. we have an airline doctor who will examine you when you arrive at the airport and he will decide whether you are able to fly or not."
WHAT?! no way was i letting some random doctor decide my fate. what if he whimsically decides that, NO, i cant get on the plane that day. what then? i wasnt about to even entertain the possibility.
"okay, then we need another letter from your doctor."

i had seen dr tai a week earlier on thursday, 18 october and he is a very busy man and notoriously difficult to get hold of. plus, i was sick and supposed to be resting for the flight. now i had to run all the way across town (IF i could get hold of dr tai) just to fetch another letter that differed from the former by about 4 words! AAAAAHHH!!! i spent the whole of thursday, 25 october frantically trying to get hold of dr tai. finally he phoned me at about 8 pm that night and agreed to write another letter for me because he is just such a wonderful man. i could pick the letter up on friday afternoon. "thank you. thank you. thank you." then i just had to rush to a convenience store and fax it before 5 pm. stressful, but do-able. WOW, they really make sick people work for their seat on the airplane, dont they!

that night i was chatting to my recently recovered friend (turmoil) and she offered to pick up the letter for me. her school was close to national taiwan university hospital and she had time during her lunch break. she would then fax the letter from her school. WONDERFUL! i think that was one of the nicest and most helpful things a friend did for me the whole time i was sick in taiwan. i was so happy. everything was organised and ready to go. i phoned my dad for his birthday on saturday, 27 october and finalised all my packing, which came to 25 kg exactly on the little scale that had been bought specifically to weigh our luggage. unfortunately, colin was very overweight if he wanted to bring his computer casing along, but he had taken all the important parts out of the casing (hard drives, motherboard etc etc) so that if he had to abandon it he could.

the house was bare that night and the next day, we left.