Wheelchair

Since i am talking about physical recovery, i should also talk about my biggest obstacle right now, walking. we bought a wheelchair while my mom was here so that i could still travel around outside. and i still use it if the walk is longer than a few minutes. this is especially important in taipei as i used to walk everywhere, maybe catch a bus or the underground (MRT) where i would have to stand. because i know that i am not bound to the wheelchair for life (a huge blessing), it is still quite fun to be pushed around in it, especially when colin pretends we are in a racing car game ;-). it is a perfect dolly for the camera, so i have used it to take some great video footage. the wheelchair also makes dealing with crowds of people easier in some ways, everybody is eager to help you out if you look stuck, you go to the front of any queue and people are just generally nicer and more gentle towards you as you are perceived as weak, an invalid, someone to be pitied.

my mother and i encountered this several times and enjoyed some of the special treatment, but i know that if that wheelchair was mine forever i would start resenting the preferential treatment and the pity. for example, my mom and i went up to the top of Taipei 101 (the tallest building in the world) and there was a looong queue, but i had my own special entrance and got into the world's fastest elevator first. another experience was going shopping; i communicated in chinese to a deaf woman (through an interpreter) so that my mom could buy one of her paintings. we bought the painting and she gave me a pretty little bag for free with a look that said we were sisters, both being disabled. this incident made me feel like a fake, if the deaf woman had known my need for the wheelchair was temporary would she have given me that empathetic look and the gift ...

being stuck in a wheelchair is also, obviously, very frustrating. you cannot enter the majority of restaurants and shops as many have stairs and are too small inside for you to maneuver your wheelchair anyway. going shopping is also terrible because you are at the mercy of whoever is pushing you, so they often end up taking you down the wrong aisle or in the wrong direction, while you are desperately waving and pointing at where you really wanna end up. communicating with your 'pusher' also becomes irritating when trying to get the correct item off a shelf or a hanger. the conversation tends to sound something like this;

"this dress?"

"no, the other one."

"this one?"

"no, no, the purple one next to it."

"this one?!"

"no! godammit, i'll rip it down myself! aargh!"

it's not easy for either side to keep their tempers in this sort of situation. ultimately, i will be very happy when the wheelchair becomes just another chair in the house.

this is happening slowly, but surely. i overdid things when i first started walking outside, but i think i have learnt my lesson. now i am tentatively trying to do 5 - 10 minute walks only three times a week. after the walks i tend to collapse on the bed and pass out from exhaustion, but it is important for me to continue. not because the walks are good for my AVM, because they aren't (increased blood flow and all that), but because i need to keep some vestige of my former muscle strength and stamina. it is also good for my mental state to get outside once in a while. i still suffer from 'information overload' when i leave my quiet cocoon and enter the hectic world outside, but if i didn't continue to get out there, just imagine how much worse the shock would be after months and months of living like a hermit. i think my head would explode.

Body

Torso - Sue Harker

It's amazing how quickly the human body can deteriorate, become weak. things that you could do effortlessly only a few months ago suddenly become monumental tasks or even impossible. spend a few months not leaving your house; lying down or sitting (supported) the majority of the time and your muscle strength, your lung capacity, your coordination, your ability to digest food, everything that your body just used to do, suddenly requires your intense concentration, your help and often physical therapy. now, i am not going to presume to write about the physical problems of recuperation generally, but i want to share some of the things that i, personally, have experienced/am experiencing.

of course, the mere nature of my condition causes physical incapacitation in some ways. I used to find/still find walking and standing incredibly difficult. to combat this, i developed a 'bent-over, shuffle walk' (otherwise known as, 'the granny sue') to navigate my flat or sometimes i had to have support from someone if my legs were just collapsing under me. now, i am able to navigate the inside of my flat without significant difficulty. i had to have a bath every day as i wasn't able to stand in the shower and finally being able to shower by myself, wash my hair by myself, even shave standing up; that was a huge victory for me about two months ago. but, i still sit on the toilet to brush my teeth, brush my hair, put on moisturiser etc.

personal hygiene is also very important when you are housebound. most days i don't leave the flat, i don't see anyone except colin and dina (our phillipino house assistant) so it can become tempting to stop washing your face, body and hair, to stop brushing your hair and your teeth, stop shaving every day. nobody is going to see you or smell you, you are not going out into public for days at a time so, why bother? this way lies depression. so, i make sure that i shower, brush my teeth and hair, wash my face and use moisturising cream every day. it is important to keep these rituals, both for health reasons and also to keep yourself feeling like a human. even if you can't take part in public life and don't have much contact with other humans, you can still make sure you act like one in private.

i have to admit that i have 'let myself go' in some ways. i don't shave or wash my hair nearly as often as i used to, and i don't wear deodorant unless i know i am going to see other people. these are things that i used to do for the benefit of those around me, they seem kinda pointless if i am going to spend all day lying on the couch, in my pyjamas, by myself. plus, i have come to terms with the fact that i have eternal 'bedhead' ;-). i have also stopped using half the silly eye creams, neck creams and face masks that i used to. my former obsession with wrinkles seems so shallow, unimportant now. but if i get half the chance, i still love decorating my exquisite self ;-).

the other part of my life that i have had to become very strict about is my eating habits. when the body is under extreme stress it can adversely affect the digestive system. i, for example, have developed irritable bowel syndrome, partly because the brain controls the way the stomach operates and my brain is not functioning properly. i also get virtually no exercise, which inhibits my digestive system function and can lead to chronic constipation, so i need to eat a lot of fibre and avoid stodgy food. and, being female, i worry about not putting on too much weight, which means cutting down on the amount of carbohydrates, sugars and fats i eat. i eat very little 'junk food', sweets or chocolate and i try to avoid bread, rice, caffeine etc. i don't need the same amount of energy i used to when i was running around teaching crazy, little, taiwanese kids so, i don't need to eat as much food. i am also far more conscious about eating healthy foods that will help my body in the healing process, especially since the medication i take is already putting a huge strain on my liver.

another important part of the healing process is sleep and rest. i can get exhausted doing too much of anything, even if it is just typing on the computer or reading a book. in fact, if i talk too much i start getting short of breath. i always try and listen to my body and whenever i need to sleep, i do. it also helps that i love afternoon naps ;-). being this weak and helpless is also very frustrating for me when i'm used to being young and strong. it was/is a big adjustment learning what my body is capable of and what it can't handle right now, but i just have to keep reminding myself to have patience, a lot of patience, and that i will be back on the dance floor and running around when my body is ready. no sooner and no later than that.

Anniversary

Happy Anniversary to me, again! today is my four month anniversary since my gamma knife brain surgery. only four months? it feels like a year! i am not even halfway yet! i have my first MRI check up in august, which is also my birthday and when we are moving into our new flat. so, that will be a very auspicious month! i have also had to tell my school that i will maybe be returning to work only in november (which is also when my taiwan work visa expires - another complication for a later post), but there is no way to tell for sure, as my recovery so far has been very erratic.

the surgery is definitely the most compelling part of the story, but the recovery is by far the hardest to deal with, both mentally and physically. i think i need to devote separate posts to those two issues as i have been struggling with both recently. mainly because, after the treatment, you expect things to be A-Okay! but they're not. and friends and family tend to forget that the drama isn't over after the surgery, the drama is just beginning, and the greatest test of one's will and inner strength is still ahead. i have to admit i am a bit scared ...

Smoking

Taipei 2005

i was a heavy smoker for about 7+ years and i couldn't go without a box of ciggies in my bag. i was always the one at an outdoor, three-day party, who still had cigarettes on the third day because i had brought 6 packs with me in preparation. they were like my safety net. i became a terrible chain-smoker when drinking and i think i also used ciggies as a weird self-esteem booster in social situations, it always made me look and feel cool. and even now, when i see old photos of myself with a beer and a ciggie i wish i could go back to that life in some ways. that was the fun, party girl with the 'devil may care' attitude (my 'cool' persona) - not the depressed/depressing brain surgery girl with the 'god, i need to go to bed, it's 11 o'clock already!' attitude.

and all smokers will tell you that cigarettes relieve stress, and teaching english at my school here in taiwan, piper english school, is actually pretty stressful. especially since the kids can make you as angry as possible and you are not really supposed to 'lose your temper' with them. you can speak loudly and reprimand, but heaven forbid you really start screaming and banging on the whiteboard. i used to have these urges to just whack kids with my textbook - not too hard, but just hard enough. some of them really do deserve it! but with cameras in every classroom you can't get away with it. so, my few, stolen cigarette breaks during the day helped me control all the pent-up rage from my last class of 20, smart-ass 6 year olds or 10, crazy 4 year olds. i do love my students, but they still used to drive me to distraction. of course, i knew this belief that cigarettes were 'my saviour', my stress relief was all in my head, but it was just a great signal of the end of the day when i could walk outta that school, light up and breathe deep - aaah!

The whole time i was smoking i knew i stunk of cigarettes, my house stunk of cigarettes and i tasted like an ashtray. i also had a chronic cough that got worse when arriving in taiwan with the humid, sub-tropical climate and the terrible air pollution. taiwan has acid rain, for god's sake! i had 4 year olds with smokers' coughs because of the poisonous taipei air so, it didn't go well with my smoking, if you know what i mean. i also had terrible shortness of breath. in fact, for about a year before January 8 2007, i would have trouble breathing when going to bed. i would lie in bed gasping for breath, finally start falling asleep and actually wake up, suddenly feeling dizzy, because i had stopped breathing in my sleep. i often had to sleep with the fan blowing air straight into my face to help me breathe.

of course, i knew this was bad and i tried to quit smoking a grand total of 4 times since arriving in taiwan in november 2004, the longest i ever lasted was 2 weeks. the normal time limit was 3 days. i would get irritable and pick fights with everyone and i would take it out on my students, which was very unfair. i would cry and get depressed and obsess about the fact that i couldn't have a ciggie. being a smoker was part of my identity and i just couldn't imagine i would ever be able to quit.

then i found out that i had an AVM on my brain stem and that i would have to have gamma knife radio surgery and my life changed forever. as i have mentioned before, i demanded to go out for a cigarette to help myself deal with the shock. it was cold and rainy outside, the cigarette tasted like dirt and once it was finished i still had to deal with the harsh reality of what was happening to my brain and my body. the cigarette had no magic powers, it didn't make me feel any better. that was the last ciggie i smoked and i haven't looked back and obviously, for health reasons i cannot drink or smoke. smoking thickens the blood and can cause blood clots (among other ugly things), which is the last thing someone with an AVM needs, you're already having blood flow problems - don't make them worse! and i can't drink because the medication that i am taking puts such a huge strain on my liver that one bottle of beer could cause liver failure.

drinking and smoking, two of my favorite activities, but i don't crave them, miss them as much as i thought i would. my life changed so drastically that day that i don't even think about cigarettes. it helps that i am not going to bars and watching loads of people smoking and drinking, i am a different person now, in many ways, with very different habits. even when i see my friends smoke, most of the time i just wrinkle my nose at the smell, it is very rare that i actually crave a ciggie. i don't need the cigarettes to uphold my 'persona', to relax me, to give me more confidence. my confidence now comes from what i have survived and what i am surviving, from knowing that i am an incredibly strong person and that this experience will, ultimately, make me a better, a more grateful and a more thoughtful person! cigarettes are just not a part of my life, my psychological make-up anymore.

it is an incredibly surreal experience to imagine my old life and look at my current reality. things changed so quickly that there wasn't even time for my head to spin.

Anniversary

Happy Anniversary to me! it has been 2 months since i started ravings of the housebound and i hope that i can continue to make it interesting and informative and try and veer away from ranting and moaning too much, although that is bound to occur sometimes. more importantly, it has been 5 months since i first learnt that i had an AVM on my brain stem and since i quit smoking. and it has been a looong five months, but i don't wanna turn this post into a whine-fest. instead, i want to focus on the victories i have achieved, like quitting smoking, which is a HUGE victory for me, but i think i will leave that story for tomorrow.