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.