Travelling

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

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

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

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

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.