Shopping

22 August - 7 September 2007

The next few weeks trundled along without anyone really noticing that they were passing. Colin was working and saving money and he had found a friend in our new neighbour, so he was happy. Rose had finally figured out what her job entailed, so she was happy. and i was feeling much better, averaging about 2 spasms a week, which meant that i could suntan on our rooftop, read on our balcony, take my photos and enjoy the peace, so i was happy.

Our rooftop

colin and i had also found a fantastic night market near our flat called RaoHe. it was big enough to have all the things you would want to buy, but not so big that you got lost. raohe is an old and famous night market as it has the three tiered temple at the one end of the night market, which is a beautiful sight. colin took me shopping there a few times, which always made me happy. he would push me in my wheelchair and then we would stop at stores or stalls that interested us and sometimes i would get out of my wheelchair and go inside a store (especially for shoes ;-). i managed to buy some cheap and pretty shoes and clothes there and i also found all the christmas presents that i would need to take back home with me.

Huaxi night market

night markets are everywhere in taiwan and they are a great way of shopping, which is uniquely asian. basically a night market is any open area of the city that has been designated as a shopping area. some night markets are just a few streets like the night market we used to live near called ShiDa and some cover many blocks of the city like ShiLin night market, which is the biggest in taipei. many of the night markets are near temples and have become historical landmarks such as Huaxi night market or Snake Alley. it is called snake alley because that is where snakes are gutted and bled so that people may drink their blood - this is done in full view of the walking area and is not for the faint-hearted. but right next to the restaurant where a snake is being gutted is a sex store filled with dildos and porno DVD's with all the naughty bits covered up (what's the point? ;-) and next to that are clothing and traditional ornament stores. and to complete the hilarious incongruity of this particular market; it also happens to be next to one of the oldest temples in taipei, LongShan temple. religion, porn, clothing and animal torture/blood drinking - these are not oxymorons in taiwan and that is what makes it such an interesting and crazy place ;-).

Ximending shopping area

but back to night markets in general; as their name suggests night markets open late and close late, so most stalls would open at about 6 pm and close at around 10 pm or even later. (there are also markets that open earlier in the day such as WuFenPu - a huge clothing market - and Ximending, which is a more upmarket shopping area. oh and let's not forget the stunning, sunday flower and jade markets right next to da an forest park) there is nothing quite like shopping in a taiwanese night market. one has to shuffle along with throngs of people past millions of brightly lit stores selling everything from bags, shoes and make up to children's toys. in amongst these rows and rows of clothing stores are food stalls that sell everything from milk tea to chicken feet and stinky tofu.

Sunday flower market

the assault on one's senses is enormous:

sounds: most stores play extremely loud techno music to attract customers, but once inside the store it is pretty much impossible to hear yourself think. then there are the salesmen who stand outside their stores shouting repeatedly into a megaphone about their great prices, and anywhere that sells clocks will have all the clock alarms ringing constantly. all the millions of people shopping in the night market then have to shout over this cacophony to hear each other. this extreme noise can be both energising and hugely irritating.

smells: most taiwanese foods have very pungent aromas; whether it is frying chicken feet, stinky tofu (which smells like sewerage, but doesn't taste that bad), boiling intestine soup, durian fruit (which smells so bad that it has been banned in hotels throughout asia!) or sickly sweet drinks like hot almond milk. all those smells combine with the sweat of millions of people, the trampled dirt of dropped food and packaging, the belching fumes of buses and scooters on a summer night with a temperature of 36C and 80% humidity. it sounds disgusting, but i enjoyed it for a long time. the smells are real, human, they smelled like home to me.

Clothing store

sights: every colour you can imagine lit up against a black sky lure shoppers to different stores and then one has to try and look inside the stores to see if they have the hair accessories, clothes, shoes or jewellery that you want. each store normally contains one type of item so that one will have to peer into a huge store filled with just bags from ceiling to floor or a store filled with rows and rows of underwear, any colour and design that you can imagine is there. you cant blink in case you miss something. after a few hours of shopping like this you will have the driest eyeballs ever, but tonnes of packets filled with beautiful things that hardly cost you anything.

so, everybody was happily occupied for a few weeks and then suddenly it was colin's birthday!

Realisation

August 21 2007

Luckily, Colin had tuesday afternoon off from work so he could accompany me to the taipei veteran's general hospital for the last time. knowing this would be our last visit with dr. chung we also planned to ask for all pertinent medical documentation including treatment information and MRI and angiography images to take back to south africa. thank god colin could come as getting all that information was an extremely complex process. it necessitated wandering around the entire hospital looking for obscure windows in strange passageways, leaving said windows to find payment counters to get stamps on forms, then taking those forms back to the original obscure windows and doing it all in chinese. oh, and let's not forget the jostling for position in line with the ubiquitous, middle-aged, taiwanese ladies.

i was drugged up to the hilt and pushed along in the wheelchair, most of the time with NO idea what was going on. if it had just been rose and i, i dont think we would have ever got out of that hospital alive - or maybe i would have, but i definitely would have killed rose by that stage. as i have mentioned before, rose is useless in these situations; she can't push a wheelchair, is too scared to talk to anyone, has no sense of direction and generally just gets increasingly flustered until you think her head might spin off her body. funny to watch, but not when it is the person you are relying on for help. rose is a lovely, caring person with good intentions, but she is, unfortunately not blessed with anything remotely resembling common sense. so ... thank god colin was there. we ended up spending 4 hours in the hospital gathering all my information and then took it home.

Cerebral angiogram
it is actually very interesting to look at the images from my gamma knife radio surgery as you can actually see the stereotactic head frame in the images. here is a cerebral angiogram from that day. you can clearly see the nails that were used to screw the head frame onto my head and the X marks are also from the stereotactic head frame. they are used as a frame of reference to help the neurosurgeon triangulate the angles of radiation to be used. and in this picture you can see that dr. chung and his team have already circled the area to be targeted, my avm. it looks so small, doesn't it? amazing that something so small can cause such upheaval in one's body and in one's life.

but i am telling the story backwards and should really get on to the main reason for our visit to the hospital; to see the MRI images taken 6 months after my surgery. i was so excited, finally, i would get to see some improvement. a tangible sign that my brain was healing and that i would be able to return to normal life soon. we entered dr. chung's office; "hello, hello."
"how are you?"
"yes, fine."
okay, enough already. show me the picture! i just wanted to see how much 'the little bugger' had shrunk so i could start celebrating.

dr. chung showed us two pictures, before and after, as it were. NO difference?! oh no, wait, look, if we magnify the image we can see that over the last 6 horrifying, painful, depressing, gruelling months the avm has barely changed at all! "this is what i expected, good progress." WHAT?! i could barely see the difference between the two MRI's. this is what i had waited for, looked forward to, kept myself going on ... the tiniest change seen only on a magnified image. i was crushed by the full weight of what my future held. 2 years for full recovery, february 2009 (i will be 28 years old). the last 6 months had felt like 2 years; i was watching my 20's disappear, while everyone around me lived life to the fullest i was just trying to live.

"at least you got your health" they always say. well, they can fuck off.

Anniversary

10 months ago today my life changed forever. i finally discovered what was wrong with me after being sick for over 2 months; i had an avm on my brain stem, near to my right midbrain.

this, incidentally, is also close to an area called the 'black nucleus' or substantia nigra. the 'black nucleus' is what is affected when someone has parkinson's disease. so, a lot of my symptoms are more related to parkinson's symptoms than epilepsy. this makes sense as one of my first symptoms was hand tremors and sometimes, scarily, whole body and voice tremors. i also have sudden muscle stiffness, which is also a characteristic of parkinson's. but my long convulsions, which include; full body shaking, muscle twisting and stiffening, eye rolling, inability to speak etc. are helped along by the build up of blood pressure in certain areas of my brain. it is altogether a very strange, complex, 'never-before-seen' condition.

to have an avm where mine is, to have the myriad, often unexplainable (eg: the constant popping in my ears) symptoms that i do is all very special and fascinating to neurologists and neurosurgeons and it is pretty interesting to me too. i have learnt so much about my brain, my body, drugs and myself that i sometimes feel almost blessed to be going through this experience.
now, that might sound crazy and obviously i have cursed my situation (on this very blog) more than i have appreciated it. BUT:

(a) i have QUIT SMOKING (10 months!) and drinking and by doing so lessened their importance in my life; my ego is not so bound up in such shallow, materialistic things such as 'how many parties i go to' or 'how many friends i have' or 'how much drugs i can take'.

(b) i have found a strength in myself i never knew i had - physically, mentally, emotionally, spiritually.

(c) i have experienced things that not many people have experienced. i know what it feels like to have no control over your own body and i know the terror that comes with facing that alone, i know what it feels like to have a cerebral angiography, an MRI, gamma knife surgery.

(d) i have been given the time, the opportunity, to create works of art such as this blog and to explore and enjoy the creativity that lies within me.

(e) and finally, i have found what true love, true friendship, true dedication is through my relationships with friends, family and colin.

all in all, things are not so bad. i get depressed, angry, bitter, negative very easily, but right now i feel positive. i will recover eventually (very NB!) and i will have had an experience unlike anyone else. AND if you're gonna be sick, you might as well have a weird, interesting illness, right? ;-).

Settling

August 3 - August 20 2007

Magical clouds

the next two weeks went by pretty quickly. i was still sick from the move and averaging at least one convulsion a day, normally during the morning. there was no significant change in the convulsions, they were still mostly spasms concentrated around my stomach and neck with vomiting, nausea etc etc. rose was turning out not to be as good a cleaner as dina, but she was a much better cook, so colin and i were eating healthier food.

we had friends come to visit and marvel at our beautiful new flat, we sat outside on our veranda and had tea almost every evening and when i was feeling well enough i enjoyed wandering around the rooftop taking photos during the day. i was feeling sick, but positive. i was amazed by the beauty of our surroundings, i loved being able to just walk outside and look at nature. i took tonnes of photos of clouds as i was inspired by being able to see so much open sky above me. my eyes felt like they were being exercised, stretched as i had to peer into the distance when looking at the mountains. so much nicer than staring at the tiles of the building across the alley from you. this was exactly what i had wanted!

we weathered our first typhoon on saturday, august 18 - typhoon sepat. it didn't hit us too hard although it was a category 5 typhoon (the strongest), but colin and i did have a fight that day. this was because colin had gone out drinking on friday, august 17 with our neighbour. our neighbour is/was a british guy, a party animal and wannabe dj. he was/is a nice guy and colin took to him straight away and this worried me. i knew that colin was lonely and needed friends and i wasn't happy about living next door to someone who was going to re-introduce colin to the world of drugs and all night parties. this drunken night out was my first warning sign. the typhoon had already started on friday night and i was scared and angry. i had been left alone in our new, very exposed rooftop flat in a typhoon. the windows were rattling and i didn't know what to expect, i felt abandoned and left out. these were to become very familiar feelings to me in the future. of course, i understood that colin needed to go out and have fun with friends, but not during a typhoon, please!

colin came home drunk and passed out, we had a fight on the saturday and made-up the same day. i realised that i hadnt really left the house since we moved in and explored the mountains. so colin, in a loving attempt to cheer me up and cure my cabin fever took me out in my wheelchair the next day, sunday, august 19 to survey the carnage of typhoon sepat. i was still feeling sorry for myself and started crying as i was wheeled past the mountain. colin had been hiking and had told me about waterfalls covered in blue dragonflies and mystical buddhist shrines. i desperately wanted to see all this beauty for myself, but i knew that i couldnt hike up those trails and that just broke my heart.

Temple

however, there were still many interesting things to photograph along our trip and the best find was a huge temple. it was the most colourful, ornate temple i had seen in taiwan and its discovery revitalised me. i wandered around the huge temple for at least an hour trying to capture the detail and colour of its myriad carvings until i had to be wheeled back home, exhausted. but colin promised me that he would take me there again so that i could continue trying to document its size and beauty.

i was happy in my new surroundings, colin was also happier, and we were both looking forward to our date with dr chung and the good news it would bring.

Check-Up

August 2 - August 6 2007

so, i had a lovely birthday thanks to colin, but i also had no 'nanny' thanks to the taiwanese immigration police. colin and i were very worried about this so we called everybody that we knew hoping like hell that we could find someone quickly. it was not just the prospect of me having to stay at home by myself that worried us, but dina's arrest couldn't have come at a worse time as i had my 6 month MRI check-up scheduled for 1:30 pm at the veteran's hospital on monday, august 6. i had to have someone accompany me to the hospital and colin had just taken two days off, it would've looked really bad if he had to suddenly take a third day too.

i spent thursday, august 2 at home alone, which was pretty scary as i was starting to feel the effects of the exertion of the move. i had an hour-long convulsion at 5 am where my body was alternately shaking so fast i could feel my brain rattling in my skull and then stiffening into painful contortions. i also had terrible nausea, vertigo, trouble walking and that awful feeling of crawling and pressure inside my brain that i have described before. the terrifying thing about the fast, body-shaking convulsions (clonic) is that you feel that at any moment you could lose consciousness as the shaking gets faster and faster. the stiffening part of my convulsions (tonic) are more scary to watch, i think, as my face is often pulled to form horrible expressions or my whole body will arch backward to the point that the back of my head is painfully digging into my shoulder muscles. basically the convulsions were the same as before, but they had returned with a vengeance.

this was awful for colin as he had to leave me and go to work at 8 am after just having nursed me through a horrifying convulsion, but i managed to survive the rest of the day by myself. the most important thing is to try and remain calm - not so easy when you are scared and alone - but i just had to imagine myself as a powerful, calm woman who wasn't scared of this silly little AVM at all. I had to trick myself into believing that i could handle another attack with ease. luckily, i didn't have to. colin came home and we were lucky enough to find someone to replace dina the next day, friday august 3. she was/is also an illegal phillipino immigrant called rose. so, rose had one day to get used to me and the house before she would have to take me to the hospital for my MRI on monday.

finally, the long-awaited day had arrived. it was 6 months after my gamma knife radio surgery and i was going back to the veteran's hospital for my first check-up. i was still feeling ill and suffering from convulsions that weekend, but nothing could dampen my spirits. 6 is the magic number, i felt like i had reached an important milestone and that i would finally be able to see the amazing progress i had made. i would finally be able to see how much 'the little bugger' on my brain stem had shrunk. WOO HOO! unfortunately i would only see the results of my MRI a week later, but that was not important, it was the fact that i had gotten this far. my life was surely about to change.

so, on monday, august 6 rose and i took a taxi to the veteran's hospital. i could tell she was nervous. she didn't know me or the hospital and had no idea how to push a wheelchair - we ended up driving into walls and counters, almost knocked over some poor old taiwanese man hobbling along with his drip-stand, got stuck in one or two elevators and rode over quite a few angry toes. i had made sure that i was nicely 'drugged-up' for the MRI with xanax and extra clonazepam as i knew that it was going to be very loud inside the machine and in my current, unstable condition that noise could easily have triggered spasms. just the taxi ride to the hospital was enough to make me feel nauseous. unfortunately it fell to me, drugged as i was, to navigate us around the 'red tape' and unending halls of the veteran's hospital. it was like the blind leading the blind and i am amazed that we managed to do all that was needed to be done that day.

we eventually made it to the MRI section of the hospital. i changed my clothes and removed all metallic objects before being pushed inside the claustrophobic cocoon of the MRI machine. i was a pro by this time, this being my third MRI and i could tell immediately that this machine was not as new as it should be. the noise was deafening and the machine actually shook during some parts of the examination. thank god for xanax! after about 30 minutes i was done. "where do i go to pay?"
"you don't need to pay, the government has already paid for you." thank god for government-funded medical care!

so, now all i (drugged, disoriented and nauseous) needed to do was navigate rose - who was proving to be a bit on the slow side - around the labyrinth of hospital corridors to find the correct counter to make an appointment to see dr. chung, my neurosurgeon in a weeks time. then i could get the good news and gaze upon the glory of my healthy brain stem, only slightly marred by a teeny-tiny AVM. but aaargh! i couldn't see dr chung next week, i would have to wait two weeks. so, with no other choice i made my appointment for tuesday, august 21. i would just have to wait a little longer for the good news.