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.

Birthday

August 1 2007

"surprise! i took wednesday, august 1 off work so i could spend the day with you for your birthday!"oh, colin ... you are just the sweetest thing.

i had just planned to finish sorting things out at the flat with dina's help and maybe i would get a present and a nice dinner for my 27th birthday. but colin had everything planned out and i was spoiled rotten the entire day. i was a very happy girl! but before i go into those details i should tell you about dina's surprise!

colin and i stayed up late watching a movie and waiting for the clock to turn to august 1 so we could officially declare the start of my 27th year on this planet. according to the taiwanese i would be turning 28 (NO THANKS) as all children are born at the age of 1 in chinese custom. so, whenever a chinese/taiwanese person tells you their age always remember to subtract 1. colin was just bestowing the mandatory happy birthday kisses upon me when i got a strange message on my cellphone. it was from dina and read "MAAM SUE, THE POLICE HAVE CAUGHT ME. I AM AT THE PRISON. PLEASE CAN YOU CALL ME AND HELP." hmmm.... happy birthday sue!

Dina

we had known that dina was illegal when we hired her, she had been illegal for about 4 years already so we never imagined that she would get caught while in our employ. now, this message worried us for several reasons. first of all, if dina gave our names and address to the police we would have to pay a huge fine for employing an illegal immigrant plus colin would've been hauled off to jail as he was/is also working illegally in taiwan. colin's illegality was not his fault as he had been screwed over by a previous school who had promised to get him an ARC, but never did. luckily he had then found another school that valued him so highly they didn't care if he was illegal. there are, in fact, thousands of foreigners working illegally in taiwan.

our second worry was that this was all a ploy. now, it seems terribly unfair that we ever thought this of poor dina, but we were suspicious because we had put ourselves in a dangerous position. dina had one of our sets of keys for our old apartment. we had given them to her at the end of the day on tuesday, july 31 so that she could go back to our old apartment and collect the many old things that we had given to her like old clothes and even an old computer monitor. in return she was going to take out the three huge bags of garbage that were still in the flat. (in taiwan, the garbage truck comes at certain times along main roads playing a loud song. this is a signal to everyone to grab their garbage and recycling and run out to the truck and throw the garbage in themselves. this is done because there are millions of tiny alleys and lanes in taipei that the garbage trucks could never drive down. so in taipei, it is not the ice-cream man, but the garbage man that plays a tune ;-). anyway, A) we were worried about getting our keys back before some criminal got hold of them and B) we were worried that maybe our old apartment had been cleaned out. we were so paranoid that we actually got into a taxi at 1 am and drove across town to our old apartment to check that everything was still there. it was. phew!

dina eventually phoned me at about 1:30 am. she sounded scared and was very apologetic, saying how good we had been to her and how much she was going to miss us. she promised to return our keys to us via her friend and only asked for the money that we owed her for two days work. now, i felt really guilty about mistrusting her! the only problem was getting our keys back before we had to hand them over to the new tenants on thursday, august 2. unfortunately we didn't get the keys back in time and colin had to run and make a second copy to give to the new tenants. we couldn't exactly tell them that there was a set of keys to their new apartment currently sitting in a taiwanese prison with our illegal phillipino house assistant, now could we?

Birthday feast

we did finally get the keys back (and immediately threw them away!) and give dina her money and she went back to the phillipines. we had to find a new house assistant and quickly, but first i wanted to enjoy what was left of my birthday.

colin gave me the new harry potter book for my birthday and then made a special feast for me with all the foreign foods that we love that are delicacies and notoriously hard to find in taiwan. so i dined on special cheeses like brie and camembert, ate olives, smoked mussels and oysters and had two packets of salt and vinegar chips (most of this food is only available in one specialist store in taipei, jason's and costs a small fortune). we watched movies and i was generally treated like a queen for the day. i was very happy, but where were we gonna find another dina?