Thursday, 9 December 2010

Santa Claus is Coming to Town...



So snow is late-r this year. But it came with a vengence...




Outside the CAS in one of the first snow-falls this year...


I was on my way to CAS (Children's Aid Society) early one Wednesday morning, and when I got off the bus, it was raining. In fact, it was raining from before I woke up, and all through the time I traipsed across campus to the bus I wanted.

But in that short time I got off the bus and walked to CAS (less than a block from the stop), it changed from rain to snow! I actually saw it change!

By the time I was done with my volunteer work at the CAS three hours later, it was completely WHITE outside. But oh-so-pretty! My friend, Irene, and I, ran out to play without our coats.




My friend, Irene, and Me...



We had a couple days snow previously, but this is the first one that has stayed. That was last week, when we could still play (briefly!) in the snow in light clothing.

Today...it's -15 degrees. Bah!



Gingerbread House...It's actually quite nice to eat too!



And I made my first gingerbread house at a Christmas Party hosted by Kinark Child and Family Services, a volunteer organisation I'm attached with.




My Elmo spray-paint t-shirts...




The child whom I'm working with, we had made our own spray-paint t-shirts the week before, and so we wore it to the party! I can't post a picture of us together for confidentiality reasons, of course...The kids got their own stuffed-to-the-brim stockings and the adults (volunteers, parents etc) got a plant (it's got pink flowers!) each...



Lol...As pretty and thoughtful as a plant is, I have the lousiest fingers ever for plants. I tried having one in my room once--it was such a pretty pot of dark African Violets that I had to get it when I walked pass it in a store!--but it died a couple of months later.

Another plant that CAS gave me last year as a thank-you gift has now being semi-adopted by my uncle because his fingers are uber-green! And I didn't want to risk another pretty pot dying...



Let's see how long this one lasts!



Thursday, 2 December 2010

Wear White to Black Out Cancer Day...



November 30th was "Wear White to Black Out Cancer Day". I wore white to honour Aunty Dalilah and Aunty Ruby who passed away recently from cancer...

I'll be wearing purple on March 26 for Epilepsy Awareness Canada. Which isn't hard because you find me in at least one purple thing more than half the week. I know the first time I wore purple on March 26 was last year. It happened to be Mother-Goose day, and one girl thanked me for wearing purple. She had Tuberous Sclerosis and Epilepsy.


Saturday, 20 November 2010

When the Tables Turn: When Children Become Adults...



I find this fact very interesting, and also very painful.


When a couple has a baby, they give everything they can to that child (does not apply to abandoned, unwanted children, of course). They will often sacrifice if it means that their child would get something better. And that love knows no boundaries because parents will do that for years, and for more than one child, in many cases.

But then that child grows up, and that child is in their teens or young adulthood, and now, the parent becomes somewhat a burden. I mean, how many times do you hear things like "oh, my mum is such a pain", or "I hate my dad"?



I find this particular culture very disturbing.

When I went home for the summer, I was super happy.

And everyone was happy I got to go home (because last summer I didn't and I was a little miserable having to study throughout summer); but for some reason, they seemed to think it would be a little awkward or something...


Cause I had people ask me: "How was it like having to live with your parents again?"

Me: "Great!"

Them: "Oh...Really? I would hate having to live with my parents again"...


So I can understand that when you're used to so much freedom and being able to do what you want and come home when you want; I don't, however, understand why it should be viewed as something negative...


I can also understand that some people have not-nice relationships with their parents, of course, but is it a norm?



I volunteer in the hospital and I meet so many old people who just don't have somebody. They will tell you they have children, but their children don't visit them in the hospital because they're too busy. They won't even call in some cases because they don't want to disturb or burden the child!

It strikes me as weird.

I know these children now have their own families, but what about the person whom without you might not have these families???



When a child is admitted into the hospital, the parent will drop everything and go. But when a parent is admitted, children don't seem to feel the same...need.


It strikes me as weird that many parents feel the love and need to provide everything for their child (not the abandoned ones, of course), but children don't often reciprocate that love and need when the parents grow old.


At the very least, don't they feel a sense of...duty?



Wednesday, 10 November 2010

Independently-driven and Mentorship-based Education...



I have been neglecting this blog again. It just happens I am now going to two different campuses in two different towns (same university) and my workload has been a little high.

This year has been interesting because although there's a lot of work, it's work that is very unstructured. I am in charge of most of my own planning and work-management because the number of hours I put in is less...monitored.



While my professors recommend and/or require I work a certain number of hours, I don't actually have someone breathing down my neck. I was however, warned, that if I decide to slack off, I would pay for it later because I won't have work to hand in and I will be pulling all-month'ers at the end of the year.

Pretty cool, although very new territory.




My work in the lab at the other campus has been interesting. It requires a one-half hour commute and it really cracks the whip because I need to be up at 5.30 am for my bus at 7 am (I take the 5.20 pm bus home), but I've been enjoying it.

Learning a lot more about children and behavioural observation, which is very interesting! I didn't realise how much the time I spend with children in general will help me in this course because it certainly makes me notice things about children that I am sure I would have missed otherwise. I'm pretty excited because we're going into schools in the region for language-based testing soon!




Basically, this year is pretty different from my previous years. I am conducting my own research for my thesis, am part of my professors' research for other stuff, and am doing a lot more hands-on work. A few people have voiced their surprise about how come I'm writing a thesis when I'm not doing a masters, but yes, the system here is a little different. Having said that, not everyone chooses to write a thesis and most graduate without. And my volunteer work has certainly helped shaped my school work and vice versa.


I guess you can say education, at this point, is quite independently-driven. However, as the thesis coordinator has said, it is also the highest level of mentorship the department offers on an undergraduate level. Because at no point of your undergraduate degree do you get to work one-on-one with a faculty member, create your own project, and see your own results!

I'm liking this year!



Thursday, 7 October 2010

Finding Some ME Time...




Finding a balance beam is so exhilarating! My friend and I took turns jumping!



I finally found a really nice ballet teacher who was willing to teach me.


But what I had signed up as a form of relaxation and joint-strengthening was a little stressful. Why? I was stressing about ballet because I had to get it just right.



But I made up my mind that I was going to just enjoy the dance and forget about the technique. Because eventually, with repeated lessons, the technique would perfect itself.

And I think I had my best session ever.





Me time...




And today was about the most gorgeous an Autumn can get. So I packed my stuff and headed to the pier by the river that runs through the university and plopped down to enjoy the sun. I kicked off my shoes and played with the water and just...did nothing else.



There is something very calming about being surrounded by nothing but water and geese...




I think I finally found my perfect balance in university. As much as volunteer work and a carefully planned routine keeps my universe in check and keeps me relaxed, I realised I forgot one component all this while.



I forgot to do something every week that was selfishly just mine. Something that is just me spoiling myself with ME-time.

And I think I found it with some dance and some solitary walking...


Saturday, 2 October 2010

Applying for Grad School is like Taking a Course...



I have come to the conclusion that applying for graduate school (well, I speak for Psychology, anyway) is like taking a course in university. There is just so much work to do!


You have to first decide which university you want to apply to, and then decide which program and professor and/or lab within that university you want to apply to. Then you have to figure out the requirements of that university, program, specific lab/professor. Then you have to figure out if that professor is accepting students for that year.



Then you have to write your GREs (Graduate Record Examinations), then you have to write your Statement of Interest, then you have to find 2 (or 3 or 4) current professors and/or professional referees (depending on the program you're applying for) who would write you good recommendation letters and whom you have to follow up on as a reminder, because they have to send those letters in signed and sealed.

Then you apply for scholarships which means you want to make sure you have good research experience and background...



My goodness! No wonder people say you have to think about graduate school very early on! How are you supposed to do all this when you have only a few months before you graduate? You can't gain much research experience in a couple of months, for starters.



So, people, plan...Plan WAY ahead...

Boy, am I suddenly glad I am not planning to go to grad school immediately after graduation...I'm only doing half the workload (to know what I am in for when I do apply) and already I feel all-a-flutter...



Wednesday, 22 September 2010

"You a Ballerina?"...


"You a ballerina?"

Lol...I never thought I'd hear that, ever...


I attended an adult jazz class last night, with a bunch of, well, adults. We started out with warm ups, and very soon, were happily dancing. Early into the session, the instructor pointed to my feet and asked about my background and when I told her "no ballet", she said "well, very nice turnout".

I had to laugh--guess my 10 weeks of ballet worked! My ballet teacher would have been proud!


She then said, "for now, point your feet in front ok, no turnout"


I'm liking this--finally, a type of dance I actually like (I tried salsa/swing and was actually bored cos I don't like dances where someone has to lead).

And if I find a ballet teacher, even better.

Tonight, I thought I'd head to the gym and join the university's jazz session and see how it goes. Heh. this is fun.



Wednesday, 15 September 2010

A Lesson in Breathing...



It's amazing, really. I'm taking about half the amount of courses I took last term and I actually feel busier. What's even more amazing is my supervisor actually thinks I can manage a full course load.

This week is the first week for everyone on campus. I came back a week earlier because I had some work to do with the first years.


And while mostly everyone was busy getting to know everyone else and settling in, I already had my first assignment due today, three days into the week. Getting it done was such a relief. It was just a one-page proposal, but I really didn't want to start off on a bad footing with my supervisor by getting this wrong.


"I like this"...

A BIG sigh of relief...


Perils of being in fourth year.

Thank heavens I had the sense of not taking a full course load, and not overestimating myself.



Wednesday, 8 September 2010

New School Year, New Hair, New Glasses!




New school year, new hair, new glasses!




Phew. Sorry it took me so long to update (this seems to almost be a common theme nowadays, isn't it?)...




I had a whirlwind of a few weeks. Busy last minute packing, busy last minute meeting of more people, horrible 32 hours or so flying and in-transit (KLIA-Dubai-London-Toronto), followed by a whirlwind tour of Ottawa-Montreal-Quebec City (my uncle/aunt treated me!), followed by a huff-puff-huff move back to campus!




This week is frosh-week on campus. I have just finished conducting 3 sessions of academic-seminars on academic integrity with the first years.

And I am now looking forward to a few days to myself, just lazing around.



I am looking forward to starting the new year.

I like to start the year afresh, and apparently, I do it with my hair as someone reminded me. Last year, I dyed it purple. This year, I chopped it off. I haven't had a bad review yet, so far.



One friend squealed "why did you have to chop alllll of it off?"; my professors like it apparently because they have all commented about my hair and how it's 'so cute'. I'm not sure I want them to know me as 'cute', but oh well...



So what did I learn from all this?


Apparently, my hair has attracted quite a bit of attention because everyone noticed I cut it. And since everyone has raved about this new do, apparently, they didn't like the long hair (although they liked the purple cos I got some raves from professors and friends alike for that)...




So, moral of the story?

Be careful what you do with your hair...




Wednesday, 18 August 2010

Hydrotherapy for Animals...



Hydrotherapy has been shown to help people; children, adults and the elderly have benefitted from this. It has been used to help rehabilitate people suffering from muscular weaknesses, obesity, stroke, partial and complete paralysis, hypermobility, arthritis, special needs individuals with various needs, and the list goes on.


Apparently, hydrotherapy is now also used for pets! Check out this video of Nazzanin, a Turkish Van cat was suffering from partial paralysis of her paw. Oh, and Turkish Van's naturally like water, so that's surely a plus point!





Thursday, 5 August 2010

Comparing Education in Psychology: "Visit a strip club (male or female) and observe the behaviour of both the dancers and the customers"...




Ali, Ah Chong and Arumugam: "Wah, Psychology, can read mind".


Hmmmm, that is pretty much a standard statement that I get when people hear my major. You know, truth is, if I could read my own mind, I would actually be very ecstatic ;).




At the Freud Museum in London, England: He's inescapable in Psychoanalysis, Psychiatry and even Psychology.




Ok, news flash everyone. We don't read minds. We also don't use crystal balls, read tea leaves, tarot cards, and neither can we predict the future.

And while we're on the subject, yes, it is a Science. Something which many people don't seem to get.


Another common perception is that Freud is the God of Psychology. News flash again. No, he isn't.

While we cannot run away from Freud because many of his writings is applicable (not in every single way), Freud is inherently more relevant to the Psychoanalysis and Psychiatry.

And while we're at it, yes, Psychiatrists are medical doctors (and Psychologists are not, unless they also went to medical school).



Anyway, I'm curious as to how Psychology is taught in Malaysia. I guess I am wondering how different my experience would be had I done it locally. What about if I had chosen a different university in Canada, like a huge one? What about if I had done it in another country besides Canada?

What are the classes like? What are the discussions like?

How much exposure to research is there? How much emphasis is put on Statistics? How much hands-on experience do students (if they choose to) get if they want to be part of a research lab?



In one of my relationship classes, we had to role-play asking your not-very-cooperative partner to use a condom. We also had to then discuss with the professor and the rest of the class what possible answers did we encounter when trying to persuade another to wear a condom.

I turned to the guy I paired up with (who happens to be Malaysian!) and the both of us said the same thing: Would this happen back home?


So, would it?


This was only a relationship class. I think some people would die if it was the Human Sexuality classroom.

One of the professors of one of the sections gave assignments that would probably never have seen daylight in Malaysia (e.g., Visit a strip club (male or female) and observe the behaviour of both the dancers and the customers--a written paper was expected of the visit). Of course, students were given a choice and nobody had to do an assignment they were uncomfortable with.



What about research? We hear alot in the press about the need for Malaysian researchers and scientists producing world-class research in all fields.

My question is, how much exposure are students given to this? To produce world-class research, I'm guessing exposure to and experience with research has to start as early as possible, and the undergraduate years are the best time to start.



I'll be the first to admit that I've learnt the most when I was inside a research lab, because you finally get to put into practice what you've only seen in textbooks and heard from professors. Even when I was doing very simple work (inside the lab), it felt great to be able to have hands-on experience!



I'm also a self-professed hater of anything math-related. I despise math. With a lot of passion. The only part of math I ever could stand was Statistics, simply because it had diagrams (think graphs) and I am a visual learner, among others.

But too many a math teacher killed my tolerance of Stats.



When I heard I had to do Introductory and Advanced Stats as part of my Psychology degree, I almost cried.


I took Stats while I was in Inti Penang (I was told I would have to do it in Canada again anyway because a couple of the components of the Stats course was different, but I took it anyway for background knowledge), and Oh My God, I feared and hated it.

I never understood any of the principles, and ended up just memorising to get through.



When I took the similar-but-not-exactly-the-same course again in Canada, I told the professor point-blank how much I feared and despised it. And I remember how she would give me the reassurance that I was doing ok, and God bless her, use as many examples until I got it.

And I remember how her face grinned from side-to-side and how she pumped her fist when I got my A. And I remember getting the biggest hug (yes, from a prof!).



And I realise, you know what (don't tell my profs that, I still like groaning about it), it's not too bad.


In fact, a small part of me is beginning to like parts of it again.


I guess it makes a whole lot of difference when you have your own data to play with. A research project in which you get to see how the results pan out, from data you helped collect.




I remember a particular stats component that completely escaped me because I never got the head-or-the-tail. And I told one of my supervisors about it when she asked how my stats was coming along. She actually pulled out the chair, and said: "Sit, I'm going to teach you right now. I'll make sure you get it before you leave this room".

Amazingly enough, I got it. And simply because she used data and examples we were collecting ourselves.



And it really helps your critical skills when you have to decipher the data, explain the data so that someone outside the field can understand it, find loopholes in your own work and explain it (now, that's new! you actually have to tell people where your project is weak), and suggest future directions of the work.

And one of my professors is amazing with providing feedback for your work and academic writing, which I am extremely thankful for.



Would I have overcome my disproportional fear of Stats if I was doing my degree locally? I don't understand how a course which is so similar can be so different in how I face it. Is it the teaching method?



I know many people fear Stats.

So, if you're majoring in Psyc and fear Stats, have you?


I would love to hear opinions or other experiences, whether or not you're majoring in Psychology!



Thursday, 22 July 2010

Dear God, Please Plant a Limau Tambun (Pomelo) Tree for Aunty Dalilah...



"Bend...and look in the mirror"...

"Now, on your toes, and hold, 1, 2, 3, 4"...

"Now, tendu (stretch) to the side"...



It was Monday evening (July 19), and I was in a large ballet studio pointing my not-so-tiny toes and getting lost in the light but calming music. I had just heard that Aunty Dalilah, or Aunty D as I call her, had passed on the morning of July 19. But I had seen the phone call from Kak Pi hours too late and thus missed out on following her down for the funeral.




Three friends have coffee in Sunway Pyramid: Dear Aunty Dalilah (right) who bought me a cake and a brooch before I left for Canada.



I wasn't shocked or sad to hear the news. I think I felt mostly relieved. I know Aunty D wanted to leave this earth in the holy land, but a part of me is happy she made it back so that Adam and Idris, her darling children, could see her. I was relieved to know her earthly suffering was no more. Aunty D, whose last conversation with me was about her still sleeping on the pink-heart pillow I had given her before I left Malaysia for Canada.


"Daphne, dah penuh my air liur on the pillow, malam-malam meleleh" (Daphne, the pillow is full of my saliva from my drooling every night).



As I stretched and flexed my toes in the studio, I felt a calm wash over me. My hips felt sore from the balancing, but I could hear Aunty D's sing-song, lilting voice going, "Daphne, I know you can do it!".



It has always been a childhood dream of mine to learn ballet (my joke about trying out for the National Ballet wasn't a joke that came out of nowhere), but somehow, my 9 year-old never thought about conveying that wish. I have never been on the tiniest side, and the idea of ballet didn't seem to fit my klutzy and sometimes too-big self. Morover, I had a tumour on my left foot, and even participating in School PE/PJ sometimes was difficult. That tumour was eventually excised when I was 16 because it decided to grow. Surgery came with its own baggage. After two years of electric shock shooting up my spine, I finally opted for steroid therapy that went on for another 2 years.

But throughout, I've always wanted to dance. And if there's something that I learnt from Aunty D., it's that you can do pretty much anything. A physical 'problem' should not stop you.



Something not many know about me is that I'm double-jointed. In the medical world, it is known as hypermobility. And for those wondering, no, I do not have two joints where everyone else has one. Double-jointed people are more prone to dislocations, subluxations (i.e., partial dislocation), muscle sprains, aches etc. It's because our ligaments, which are very loose/lax, allow us to stretch more than usual. As such, our muscles have to work extra hard to compensate for the lax ligaments.



Being double-jointed is fun, but it's also troublesome on a klutzy day. I'm the perpetual kid who trips over own feet, and splats on the floor. People on the street call us flexible. The one who will always get asked, inevitably: "Doesn't that hurt???"

One thing not fun about being double-jointed is being injury-prone. I've subluxed my knees and twisted my ankles repeatedly. I spent half of my holidays in London limping and hobbling. I've injured myself so often I've earned the nickname "Hoppy" from one of my professors, and "Hobbles" from one of the people I volunteer with.



The rheumatologists in Canada (it's a teaching hospital, so I see a team) sent me for physiotherapy to build and strengthen my muscles. And if I wanted to do yoga/pilates/dance for relaxation, it was fine too, they said. But I had to be careful.

I finally found a dance teacher who is willing to teach me ballet one-on-one. And what luck it is that he happens to be a physiotherapist by training.



What luck, two for the price of one...And so I find out I need to work on my hips (left side too loose), my ankles (both sides too loose), my knees, and my upper and lower back. Apparently, that's the whole body...


Lol.



So I guess being flexible has worked against me. But it's allowed me to skip the flexibility training in ballet. Let's see how far one-and-a-half months of ballet will get me.



"Careful, your ankles are going in a different direction than your knees!"..

"That's...not good?"

"No, that's another injury waiting to happen!"



I could hear Aunty Dalilah giggling...I know she would go into a peal of laughter if I had told her about my very-not-young body trying out ballet for the first time. And the possible tremor that might have been felt all over Ipoh (you have been warned) when I go into jumping. Oh God, please don't let this mini-elephant fall.



And God, while you're at it, please keep Aunty Dalilah safe with you. If you need a spirit-booster for some sad souls, let her know, and she'd do the job splendidly. Oh, and God, if it's not much trouble, do you think you could please plant a little Limau Tambun (pomelo) tree up high for her? She loves the fruit, so don't get offended if she tries to hide it from You.

In the meantime, may You guide Uncle Saiful, Adam, Idris and all who love her throughout this difficult time.



Friday, 16 July 2010

Putting Theory into Practice: Lingam, The Little Boy in the Hospital...



I've been visiting a child by the name of Lingam* in the hospital.

He reminds me very much of Chee Keong--under the care of Jabatan Kebajikan, sick, stays for months at a go in the hospital, insists on his way with the nurses and they happily oblige, the whole ward seems to know him in some way, and his bedside table is filled with little things that parents and nurses will buy or bring for him. Clothes (mostly used), cookies and treats, little toys.


The only differences are, Lingam is five, and can talk. Unlike Chee Keong who was developmentally very delayed, and too sick for words, Lingam is able to talk to me.


So I visit him and look at picture books with him, give him little wet-sponges cos he recently got a catheter and some IV attached and I didn't want to risk infecting it, and helping him eat lunch (cutting his chicken, urging him to eat vegetables, cleaning his face and hands after eating, etc).

But I also know I'm leaving again soon and don't want to get tooooo attached. And since Lingam is aware of things and knows perfectly well how to miss a person, I don't want him to get attached too. So I visit him about once a week, and when I leave, tell him to expect me the following week ("Arrr, ok", he says, with a head bob).



I've popped in unplanned a few times where he is sleeping, so I stroll back out as I don't fancy waking a child up.

Like Chee Keong, Lingam knows how to throw a tantrum too; unlike Chee Keong, however, he is verbal.



If there is anything I learnt about behaviours and Psychology, it's that children who throw a tantrum basically are trying to solve a problem, but they lack the skills to problem-solve (incidentally, so do adults who throw tantrums). And if you reward tantrums by giving in, or even paying attention to it, it will magnify.

It's a process of Positive Reinforcement for the one throwing the tantrum, and Negative Reinforcement for the one giving in (cos the caregiver's rewarded by having the child stop the annoying whining and screaming).



So as he whines and gives me his crocodile tears, I tell him firmly "Lingam kena berhenti jerit, baru Aka cakap dengan Lingam" (You have to stop screaming, and then we'll talk). I then completely ignore him untill he stops, which is pretty quick. The minute he stops, I give him a big smile and shower him with praise.

So, reward the stop-whining, not the whining.



Reward and punishment are surprisingly effective, when done right--there are some rules for effective punishment. Alot of people think punishment means smacking, grounding etc. Not necessarily. A statement such as "I don't like that behaviour" or "what you did is bad" is pretty effective too (NEVER say "I don't like you" or "you're bad"), something known as Positive Punishment. Punish the behaviour, NOT the person.



You can also try Extinction, which is more what I'm doing, because with multiple caregivers with different behaviours, punishment is not going to be effective.


In Lingam's extinction, what I did was basically remove the reinforcement (i.e., attention, his way etc) he was always receiving when he whines. Since he was always getting his way by throwing a tantrum, me refusing to give in is in fact me setting him on extinction (at least, a context-based extinction). Eventually, he is going to stop whining, at least with me.



Lol. I'm spending time with a child in the hospital, and I'm also putting theory into practice...

But punishment must be coupled with reward. So I'm going to bring colour-pencils and crayons (and some colouring material that one of the physiotherapists passed to me very happily) for Lingam next week who asked to colour.



Note: *Name has been changed.




Wednesday, 7 July 2010

The Last Lecture: “We cannot change the cards we are dealt, just how we play the hand”...



Image taken from here.



We cannot change the cards we are dealt, just how we play the hand.”

~Dr. Randy Pausch~
(23 October,1960- 25th July 2008)


I recently bought the book 'The Last Lecture', a book based on the lecture "Really Achieving Your Childhood Dreams", Dr. Randy Pausch's last lecture (on the 18th of September, 2007) before he passed away from pancreatic cancer. Dr. Pausch was a tenured faculty at the Carnegie Mellon University (CMU).

At CMU, some professors are asked to imagine if it was to be their last lecture, what will they want to pass to the student body and the world. For Dr. Pausch however, it wasn't something he had to pretend-play with, as he had terminal cancer.
He lost his battle to cancer on the 25th of July, 2008.



The lecture itself can be viewed on YouTube:-




I however, still recommend the book, as it chronicles the emotions that went along with the lecture, the preparation, and the different struggles that Dr. Pausch faced. This was something that sometimes was forgotten when you watched the actual lecture as he is brimming with enthusiasm, energy and zest. And it's really something to hear the words that you just read echoed back to you by the man who said it.




It really made me think.

Think about it: What would YOU say if you had one last chance to talk to the world and share all you have to share? What would YOU do if you have one last chance to immortalise yourself in the lives of your loved ones?


I wish the late Dr. Pausch's wife, Jai, and their three kids, Dylan, Logan and Chloe the best of their future ahead.


Tuesday, 29 June 2010

"Oh No, Not Epilepsy!"...



This marks the first of a series of guest-bloggers I will be inviting to blog about their personal experiences (either as an individual with the condition, a care-giver or a health-care professional) with some rare and not-so-rare conditions. It is just my way of helping spread awareness about various health issues, and the challenges, aspirations and lives of those who live them first-hand.

I hope that by allowing posts such as these, it will help to humanise these conditions/disorders, and help to open a forum of discussion for those living with it, as well as reminding them they are not alone.


Today's blog-post is by
Phylis Feiner Johnson, an epilepsy-advocate and a professional copywriter who has epilepsy herself.


For those who are interested in reading how epilepsy affects the world and its epidemiology, here's a link on the World Health Organisation website.




Phylis Feiner Johnson


Confessions of 42 years of Epilepsy…

By Phylis Feiner Johnson


When I was diagnosed with epilepsy, my parents told me I’d “never amount to anything.” But they were wrong.
I became an advertising copywriter, first on the corporate side, next as a freelancer for 25 years.

Then, two years ago, I almost died from a continuing cascade of seizures. I had a heart attack, went into a coma, then life support, ICU, etc. When I got out of rehab, I couldn’t even find the keyboard…which left me plenty of time to think.

So I decided to ditch my freelance business and become a full-time epilepsy advocate. I started my website: www.epilepsytalk.com and I was up and running!

***


I can remember my first seizure vividly. Even though it was 42 years ago. It’s seared in my memory forever.…


I was in the shower, washing my hair. It was one of those old fashioned showers with 4 water jets coming out of the side wall and a big dinner plate shower head in the ceiling.

All of a sudden WHOOSH! I felt like all of my blood was running out of my toes. I started falling down and I thought, “I’m going to drown.”

I pushed against the shower door but it was one of those heavy plate glass kind with a circular handle that you had to twist. I threw myself against the shower door but no go. Then I thought: “I’m going to die.”

I pushed and twisted as hard as I could. Then I passed out. When I regained consciousness, my head was on the bathroom floor. All the rest of me was still in the shower. I crawled out and just laid on the floor. I didn’t scream or call out or do anything. I was too terrified.


When I went to visit my father, I walked into a wall and passed out. He decided it was time for some testing…

They did those messy EEG’s and I was annoyed, because I couldn’t get the goop out of my hair. But a week later I had better things to worry about. Because I was in my father’s office when the neurologist called. All I heard my father say was “Oh NO. NOT epilepsy!

That was the first and last time I heard the “E” word.

I went home to my mother’s house where and my step-father -- who was a surgeon -- patiently explained that I just had uneven brain waves. My mother never uttered the word. Dilantin was just a pill to keep me from falling down. And by then, I was having 4 seizures a day.



I continued to pass out, walk into walls and I even broke my nose, but everything was A-OK. I just had uneven brain waves.

You can imagine what a disaster dating was. Of course, I would never tell my dates that I had epilepsy. My parents wouldn’t even utter the word, so rather than become a pariah, I kept my mouth shut.

I felt completely alone… Nobody knew how to act around me. My own parents didn’t even know what to do with me.

Little did I realize, I was far from alone. I just had never met anyone else with epilepsy. Never in a thousand years would I have guessed that in America, epilepsy is as common as breast cancer and takes as many lives. And it’s still considered an “orphan” disease, according to NORD (National Organization for Rare Disorders.) Yet, more than 3 million Americans are affected by it -- more than multiple sclerosis, cerebral palsy, muscular dystrophy and Parkinson's disease combined.


Almost 500 new cases of epilepsy are diagnosed every day in the United States. Epilepsy affects 50,000,000 people worldwide.

In two-thirds of patients diagnosed with epilepsy, the cause is unknown.

Epilepsy can develop at any age and can be a result of genetics, stroke, head injury, and many other factors.


In over thirty percent of patients, seizures cannot be controlled with treatment. Uncontrolled seizures may lead to brain damage and death. Many more have only partial control of their seizures.

The severe epilepsy syndromes of childhood can cause developmental delay and brain damage, leading to a lifetime of dependency and continually accruing costs—both medical and societal.



It is estimated that up to 50,000 deaths occur annually in the U.S. from prolonged seizures (where people stop breathing), Sudden Unexplained Death in Epilepsy (SUDEP), and other seizure-related causes such as drowning and other accidents.

There’s is a strong association between epilepsy and depression. (That’s not too surprising. You’d be depressed too!)

And here’s the kicker, historically, epilepsy research has always been underfunded. Federal dollars spent on research pale in comparison to those spent on other diseases, many of which affect fewer people than epilepsy.


Here’s, a good example:

Just a while ago, I heard on the radio that the Juvenile Diabetes Foundation was moving to larger headquarters to house their growing staff. Our branch of the Epilepsy Foundation was cutting staff.

So you can see why we need your help. We need EVERYBODY’S help…to spread information to those uninformed and misinformed …to raise awareness that we’re not all crippled weirdoes. And yes, we need money too. To help fund research…to maintain supportive resources for people with epilepsy…and someday find a cure.

We need friends, we need advocates, we need support, we need you.


***



Tuesday, 22 June 2010

Stop Moaning About the PSD; Only YOU are the Owner of YOUR Dream...



Every year, without fail, there will be big hue-and-cry over the awarding of the PSD/JPA scholarships. And every year, there will be some sob-story about how people's dreams and hopes are crashed.

The awarding of the scholarships have never been completely fair; there's always been the same 'who you know', 'quota' and the list goes on and on and on.



There are more and more and more people with Straight A's, so much so that it's beginning to defy the conventions of the normal curve. But just because you got straight A's does NOT mean you DESERVE a scholarship. It is not a right.

An academic wrote to The Star and said she (I don't know if it's a she or he; but I will use 'she') had 33.33% of her class with 8-10 A's, and yet they didn't do well when exam time came.

Fyi, exam grades usually follow the normal curve, especially one as big as a national exam. Which means in a randomly-assigned (i.e., non-streamed) class, it defies all conventions of the normal distribution to have 33.33% score straight A's! For the highest extreme on either ends (A, A+ and F), you should only have 0.1-2.5%.

Which means, sorry to break it to you, but our A's mean nothing. An exam that deviates so far from the normal curve has very miniscule validity (i.e., it's not testing what it purports to test, and the results do not reflect what it says it reflects).

So just because you got the A's doesn't mean you deserve a scholarship.



We have all been brought up with the doing-something-to-get-something culture. Do your chores, and daddy gives you some extra-spending money; Get a reward of cash for every A you get; Mummy buys you a gift for every little achievement.

While it is great to learn how to work hard, the real world isn't about being rewarded for everything.

Wow, how this reward and punishment system is blowing up in our face.




What happened to I work hard and study hard because I want to learn as much as I can, both from my studies and from life? Why is it the end is more important than the means? Don't the means have value in themselves? Since when is education a waste?


Every year, thousands of people complain about not getting their PSD-scholarships, and every year, it's the same thing: 'Why is it this person who got the same number of A's was awarded the scholarship but not me?' 'I got this number of A's and I deserve it.'

Sorry, but no, you don't. You meet the requirements to be considered for a scholarship, but that doesn't mean the place is rightfully yours.



Think about it: Just because you qualify for the job doesn't mean you get it.

Not everyone who 'deserves' the scholarship gets it and not everyone who gets it deserves it.

Not fair? Yes, probably, but so is life. BUT, having said that, there are people who receive the PSD-scholarship who deserve it.




Learn to be resourceful. Look at other means. Just because PSD won't give it to you doesn't mean that everyone else won't.



There are a BIG number of PSD scholarship recipients in my university. Probably 5/6 of Malaysian students who study there are under JPA.


I kid you not when I tell you my jaw dropped the first time I had class with a group of PSD recipients. I was happy initially to be in classes with some people I know and who have the same background (country-wise and language anyway) as me. But after the first week, I was beginning to understand why other non-PSD recipients were sometimes shying away from being with them.


On the first day of the class, during our group work, we introduced ourselves. In my group there were 6 of us, 3 Malaysians in total.

We went around with the introductions and 4 of us said our names and where we were from. The other 3 students, the non-Malaysians, realised they had some similar language background. So they had something in common too. And when the first PSD recipient introduced herself, she said her name, which country she was from, and then said:-

"I am a government scholar!"


My jaw dropped, and I saw some raised-eyebrows all around. The other PSD recipient also did the same with her introductions.

I have since heard the same introductions all around. Malaysian students who actually when introducing themselves, say that.


A new batch of Malaysian students came in, and when I met up with the Malaysian group, they all asked me the same thing: "You scholar ke bukan? (Are you a scholar or not?)"


Wow. What is this about 1Malaysia again? How does this have anything to do with anything? It's as if their entire identity is tied to being a SCHOLAR. Very big words. Very, very big words.


No offence, but you've just set yourself into a corner, because it will smack you in the face. Everybody stumbles, and everybody falls. And yes, in case you're wondering, I am a big faller and a big tumbler, and I have no qualms admitting that. But I pick myself up and go again.


One PSD recipient was bugging me in class to help her with her work. I helped her; after the 3rd assignment however, I was beginning to get fed-up. It's ok to discuss answers, and to have group studies. But when you call me up to ask for the answers...

Hmmm...



She sits next to me in class, and when the professor is teaching, she doesn't bother to take most of the notes, and even when the professor says specifically "I expect you to know this" (duh, it's a hint), she doesn't bother. And then every assignment and test and exam she calls me.

I will help you if you really don't know, trust me, I will. I have tutored entire (or almost) courses for free because people, Malaysians and non-Malaysians alike, were struggling.


But when it is your attitude...

Are these the kind of people who are called scholars?


I had one professor who gave me this look in class once. She eventually asked where I was from because she said the accent/speech patterns sounded familiar. I told her I was from Malaysia.

Silence...


And then she said: "Ahhhh...You're...not like the rest of the Malaysians I've had"



Please, someone, tell me they didn't give the professor the "I'm a scholar" spew.

Malaysia gets enough of a bad image from the press. You won't believe how many times Macleans magazine, for example, picks up on some dumb thing some MP said, or when Malaysia makes a big fuss about what Shakira or Avril Lavigne is wearing.

I've had people ask me: "What's all this fuss with Avril Lavigne? And isn't Malaysia the same one who made a fuss about_____?"

My point? If you get the PSD-scholarship, be grateful and appreciate it.

And if you don't get it, don't moan and groan. Appeal your case, be proactive etc. Look at other resources of scholarships. There are external and overseas-based scholarships, for example.

And if you did get it, congratulations, but don't let it get to your head. You have to continue working hard, or you will go nowhere. I'm on a scholarship myself (nope, not JPA) and believe you me, I'm working my bum off. A full-course load (and my scholarship requires me to maintain a certain grade), I work, and I volunteer in four organisations and two research labs. I barely even have Sundays off.



Just please, don't go down the road of 'my dreams and hopes are gone'.

I used to feel sorry for people who got the minimum requirements for a PSD-scholarship but didn't get it. And then I...grew up...And realised...nobody owes you anything. And you'll only make it if you're tough as well.

You're the only one who can sustain your dream, your hopes and your passion. Giving up completely on a dream just because you hit an obstacle doens't speak much about your dream.

You have to be passionate to chase your dream. Learn to own your dreams! Learn to fly...


Tuesday, 15 June 2010

Of Cigarette Smoke, Bloodshot Eyes and a Clogged Nose...



Ok, so what have I been doing and learning ever since coming home?

I learnt I love Malaysian food, but I don't like the heat and humidity...I learnt that I love my Malaysian drinks (think Mamak, think Kopitiam etc), but despise the cigarette smoke even more than before I left...I learnt that I miss my Durian, but I'm scared of motorbikes darting in and out.



The cigarette smoke is particularly heinous. I've always been allergic to it, but with so much smoke in the air when I was here, my nose was so clogged, it was normal.

In Canada, smoking inside any form of building or eatery is illegal, and you actually have to be 12 metres/9 yards from any building to smoke. Alot of people end up cheating a little by smoking just outside the building (like a couple metres away) because it's way too cold to walk 12 metres away, but with the wind constantly blowing, it's not too bad.



I've missed the mamak stalls very badly, but have had to stay away because of the people puffing right in your face. My poor eyes have been bloodshot and rubbed raw, and the blood vessels inside the nose are swollen and congested.

Guess being away from it all has lowered my tolerance to it.


Monday, 31 May 2010

Home Again: Of fMRIs and Ambulatory-EEGs...


Hi everyone...I'm home! Ah, so good to be back. So nice to see my own room, family and friends again...=)


I was talking to someone yesterday, and during the course of the conversation, the topic came up about healthcare.

Apparently, Malaysia does not have fMRI (Functional Magnetic Resonance Imaging) machines, and neither does it have the ability to carry out Ambulatory-EEGs (Electroencephalography) although we have (one, I believe) long-duration of 3-5 days Video-EEG capabilities. Our conversation stopped at that, but I'm sure there are other things. I must say I was shocked because I had a better impression of our technological-capacities!

Just out of curiosity, what do people do then if they need these equipment? Not everyone can afford to go overseas and get diagnosis, treatment etc!


And why don't we have them? Is it a lack of funding, or lack of technicians qualified to perform these tests and interpret them, or do we not see the need for these equipment, or...what?

PS: I could be wrong. Maybe we have the technology.





Tuesday, 25 May 2010

Guess Where?...



Ok, so someone asked how come it took me a week to get home from Canada to Malaysia. Well, I pit-stopped to visit a friend, that's why! I haven't seen Ae Mi, a very close friend of mine in years (and I painfully missed her wedding last year), so it's catch-up time...


Let's play a guess-where and guess-what, shall we? Some are dead-give-aways, while some, you have to guess a little...

The first picture is a guess which country (dead give-away), and the rest are guess what building/location/structure etc...I'll give you hints along the way!


So, guess where and/or what?


Which country: This is a dead-give away!




This place is very popular for plays from a famous guy...




And this is the birth-place of that same famous guy...




He's an international icon who came from Darkest Peru...




This staircase was in a movie...




This place houses dinosaurs...





Sigmund and Martha Frued are in that urn...




Both these are a dedication to someone (they're two different locations altogether)...





This is a famous park where the above fountain-like structure is located...



And what's a little vacation without meeting, catching up with and making friends?




Me, one of my closest friends Ae Mi and her husband Wei Chieh.




Hey, look, it's Kak Teh, of Choc-a-blog Blog!




And her husband, Uncle Hulaimi @ Awang Goneng!





Jasmine, a girl I met on the bus and whom I spent the entire day with...Jasmine's from the Phillipines and she's working in Canada!




Eric Wallis, who works at the final resting place of Freud, and who took the time to show me around...




Michael, who came with Ae Mi, Wei Chieh and me on a road-trip!




My short vacation is almost over, and then it's homeward-bound!



P.s., You can really do a lot with a small budget (if you have a place to stay). I managed my flights with the same amount of money if I had flown directly on one airline. I'm so glad I did not use my money during the year going out to the movies/clubbing/partying every week like many of my friends. This was so much more worthwhile...and cheaper too!