Thursday, November 27, 2008


Never was a religious person by nature. I believe in a higher being, but I choose not to indulge in mass relign. But I would consider myself to be a very spiritual person in some ways.

Since university, I found myself to be in numerous situations where I chose to keep my faith. I was the type that if you can say to my face about something, then I would believe you. I let go of things because I chose to have faith. And its not easy when you've seen so much negative aspects of human nature.

But my advice for everyone out there, whether you have SD or not, keep your faith. Not false hope though, but learn to believe in others and yourself, it will help you get through the darkest of times.

Change in my personality Part 3

Even though the univeristy environment is completely different from high school and growing up, it took one special person and alot of courage to start breaking down the walls I've built up. Up to this point, I never really trusted anyone, but I realized I was very unhappy. I smiled, laughed, and appeared normal, but tha's what I've been good at doing, but deep down I dind't really feel anything.

I met someone who was matuer and I felt could offer me the support I needed. And decided one day "I WANT TO CHANGE" and chose from that moment on, give this person complete trust and not hold anything back. Him and I never worked out as a couple, but thanks to his support (and my leap of faith yo ucan say) I found the courage to trust, love, and let loose a little.

I'm not sure if others were like me. There was a poitn in my life, maybe since middle school all the way up to university that I would not cry. I managed to detach msot emotions wehther its being happy or being sad. In some ways you can't really have one without the other, and back then, I gave up both so I wouldn't be so sad. Thanks to that person, I found my emotions again, I odn'tk now if its such a good thing but I can cry and laugh now.

They say you need to be loved before you can really learn to love someone. I think that is very true. being with him taught me alot about loving someone. But here's the thing, if you're not willing to keep an open mind and learn, nothing will ever change.

Years later, I'm still changing, learning my plae, fine utning my identity, and just beginning to not feel apologetic for my existance. I always thought before thatbecause I am legally blind, I was somehow at fault, that I owed people for being around me. It's not a healthy attitude, but that's how I felt deep down. Only recently, have I started changing my perspective understanding that I deserve every bit of happiness and that if I don't fight for it, no one will. It's only a problem if you see it as a problem, so what can you do? Change the way you see having SD, know that it is a part of you but doesn't prevent you from doing anything, only YOU can stop yourself from doing anything. Let go of the fear, and fin the courage to trully live.

Wednesday, November 26, 2008

Change in my personality Part 2

I still remembered a friend wrote in my yearbook. "You should smile more". I guess when trying to deal everything, I becmame very serious and uptight. It is probably just an innevitable result of growing up being different.

Living with SD isn't as bad as people think. But growing up with SD isn't about learning to deal with not being able to see, it's a harsh lesson on human nature. The more you are unable to see, the more clearly you "see" people. You lose the childlike innocencce when you are forced to face reality. What I saw as a child I did not like at all, I saw meanness, selfishness, inconsiderate and self cetered attitude in others. It really exposes you to much of the darkness in this world. But on the rare occasions, you see the "saints" who wasn't like everyone else, they put others before themselves, they simply wanted to help, and to thsoe people, I am eternally grateful.

When I got to highschool, I decided to change again, I learned to laugh things off. It wasn't the best senario but compared to being serious all the time it was somewhat of an improvement. Laughing became my defense mechnism, I made jokes about everything (and sometiems even offending people) because it became how I dealt with people. For most people, high school is probably going to be the worst place unless you've got a really good group of supporting friends. There are "bullies" that enjoyed picking on those that are different so it would make any person wtih SD an easy target. Unfortuanately at this age, they are still immatue and others tend to follow along in groups. Once again I don't think there's anythign that can be done, its just kids nad humananature.

I was glad to be in University. It was a liberating feeling to be away from the immaturity. To be in a palce where intellect is appreciate and it's not about appearance anymore. I've always believed that your surrounding environment - family, friends, school, etc. are the major influence in whether a person grows up to be "normal". My definition of normality is the retention of a certain childlike innocence. But there are some cases that grow up, perhaps in a broken family, perhaps being picked on in school, betrayed by someone, all of these cases typically brings maturity to a person. The more you go through, the more mature is usually the case. In university, I found alot of mature friends, who went through hardships in their or extent, and has a much greater sympathy toward others than your average person.

To be Cont...

Tuesday, November 25, 2008

Change in my personality Part 1

It's interesting now looking back at the way I grew up. I am fortunate enough to be born in a very loving middle class family. So I'm glad to say that part of my life didn't not add to more twists and turns into my personality.

From when I started noticing the change. (truth is you never really notice, it just gradually goes away) I was loner. I had friends but was always the odd one out, was never really close to anyone. Even though I was only in grade school, I had already learned to build a wall around me. I was angry because I got picked on alot for being different. But for the most part, I never took any of these bad feelings home with me, I only talked about school and happy things with my parents, I never told them much about being picked on, mainly because they couldn't do anythign about it. My understanding was, this is jsut the way kids are, you can't stop them from their nature, and even if the teacher stops them once, they will stilll have many many chances to pick on you since the teacher can't be watching you all the time. It was a fact of life that could not be helped unless I chose to go to those special schools.

I used to pretend I had a "black list" of people who picked on me and that one day when I am rich and successful, I'd go back and laugh in their face. In some ways, it was the way I dealt with things, hoping for some sort of justice in the future.

There are times where things are really rough, I even thought about suicide at one point. Being the logical me, I started going through the images in my head contemplating what is the least painful way to die. Then my head started wondering about waht my funeral would be like and I saw my parents craying so hard. It was at that image I realized I can't do this to them, dying is one thing but making them sad is something else. From then on I lived mostly for my parents and loved ones.

In middle school, I became very protective of others. By this time, I've already built up a wall around myself, I kept friends at arms length, people knew me but they didn't really know much about me whiel I knew everythign about them. This wall not only kept people from getting too close, it kept myself from breaking down. I was too young to be able to accept and face my condition, so instead I chose to lock it up where no one, not even myself can get in. The best way of describing it would be like a crab, hard shell on the outside but moosh inside, and if anyone was to get in and touch the moosh, I would break down into tears.

To Be Cont...

As I grew up to middle school,

Funny Phrases I hear

Here are some things I hear from people that I can't help but grin. Yes I know, some of these are not suppose to be funny, but learn to laugh it off. It's better than being angry all the time. What I've noticed is that people don't seem to think before they ask a question sometimes.

"are you blind?!!!" and if you answer "Yes" they always think you're joking.

" I can't live without my glasses, I'd be blind" meanwhile I'm sitting accross from them thinking "hmm...I seem to be surviving quite nicely~"

"why don't you get new glasses?" well if new glasses can fix the problem who would want to be blind. (It's funny the kind of obvious things they say)

"How many fingers am I holding up?" Oh yes, just coz I can "pass" the how many fingers test doesn't mean I'm not legally blind.

"Can't you read it yourself" well if I could then I wouldn't ask would I?

"Why are you so close to the screen, its bad for you you know." Yes I do, its not like I have a choice though.

But sometimes we need to be more understanding of their ignorance. Afterall, if I didn't have SD I probalby would have asked the same questions. Feel free to share your funny phrases you've heard. Leave a comment!

Monday, November 24, 2008

First Time

Yesterday I went out to have dinner with friends. This is nothing out of the ordinary, and all my friends know more or less about my condition. But its the first time I brought my manifying glass out to read the menu.

Now this is something completely new to me. I've always relied on my friends to help me read the menu. What usually happens is if I can see myself then I will go through it, if not, then I ask my friends to read it for me. I hated taking out my gadgets in public, I dispised the feeling of being stared at like some animal in the zoo. It's no big deal that we have the things we do, but I typically try to use them outside of public.

I met someone recently that told me something which clicked in my head. She said "its only a problem if you see it as one" which we all know is true. Perspective is (to me) the determining factor of reality. If you are confident about yourself and the way you are, it shouldn't matter if you are different or not, it should matter even less what total strangers think.

So at the restaurant, I took out my magnifying glass and started reading the menu. It was a liberating feeling not having to rely on someone all the time. Don't get me wrong, I was terrified to do that, I was afraid that someone would start staring. But then I thought, who cares if they start staring, this is who I am, why should I have to pretend to be something else. I'm very proud of myself for finding this independence. For those of you out there, try it sometime, no one can hurt you but yourself, so don't give them the power to feel inferior.

Never let fear stop you, always try to break your comfort zones, that's how you will learn to better yourself.

(Yeah, I know easier said then done, but here's a tip, do it in small steps, you'd be surprised what you end up with)

Sunday, November 23, 2008

Stop with the Never Ending Tests

Anyone who's been sick knows the annoyance of running countless tests. The frustrations of feeling like you're a lab rat. I still remember when I was around the age of 9, all we knew was there was something wrong with my eyes but no one knew what it was, no one was able to explain why my sight was deteriorating.

As a restult, my parents took me to see "expert" otimologists. I must have went through maybe a hundred or so optimologists. I remember there was even one time where I was exaimed by a group of students as a "live case" of Stargardt's. From a medical/scientific standpoint its all well and good that people should be more exposed so they can become better doctors, but from a kid's point of view, it made me feel like a lab rat. What made it worst was even with all these exams and tests, they still could not be completely certain that my condition was Stargardt's. It wasn't until when I've lost most of my vision adn that my retina started showing signs the "dots" that they finally concluded Stargardt's Disease.

Not knowing is the worst feeling in the wolrd. But knowing that there was NOTHING I could do made things even worst. The most common phrase i hear from optimologists is "technology is improving, there might be a cure soon in the near future." I always hated hearing that from people, sometimes false hope is the worst thing you can do. Perhpas its my personality to be a realist, I believe in facing reality and not hoping it would somehow miraculously improve. Personally, if I had put my hopes in that someday my eyes will get better, I would probably never accept who I am right now. I'm not sure if other patients think the same way so I'd love to hear from some of you out there.

Just the other day, I went to another optimologist, did some more exams. As soon as I walked into the clinic, I wanted to walk out. I kept seeing "doctors" or anyone who claimed might be able to help, all because my parents still don't want to "give up". I know theymean well, but if you're a parent of a SD patient. Stop trying everything you can get your hands on, its tiresome for us. This is not to say don't go to checkups or keep up to date on new developments, but just don't go running around trying to find a cure. There isn't one, probably won't be one for decades to come.

My best advice is, see a few experts, understand what kind of treatments are available (eye drops, supplements, etc) whehter you choose to take them its totally up to you. Don't go chasing doctor after doctor, if anything, understand what options you have in terms of aids. We are already quite lucky in terms of the technology avaialbe to help make our lives easier. There are magnifiers, GPS locators, enlarged print and audio books, and so much more.

Help your child understand and learn that although they cannot see like normal people, they can still learn and do many many things the same or better than other people.