Wednesday, December 31, 2008

some random thoughts

I've been writing for only a few months. What I've realized is, alot of the issues we, as SD patients struggle with are common accross other patients of"abnormal" diseases or those that have experienced traumas.

The reoccuring theme is insecurity, lowered self-esteem, fear, and the stages of grief. Human beings, whether you are 15 or 50 goes through these feelings at one point or another in their life. In a way it is what makes people mature. As a result, those that manages deal with more personal issues become more mature. However, in the "average" person, they only become aware of life after going through the different phases from childhood innocence to the strive for success, wealth, and family. Only when these things are in place that they start looking inwards searching for some meaning, and this is why often we see people that are in their 50's or older gain a different perspective about life.

However, I often wonder, what happens to someone who sees the world from a similar perspective to that of a person in the later stages of their life. Having a similar mentality often means that you see past the superficial things of life, but at the same time, it takes away from your motivation and desire to "be successful".

I, myself, is often at a moral dilema, besides wanting a secure job/career to provide me with a comfortable lifestyle, I've lost much motivation to "strive for greatness". I turn my attention to more personal matters trying to help people or simply spend more time with the people I care about such as family and friends. Yet, I often look back at society and occasionaly get the feeling of inadequite since I chose to spend my time and energy on people rather than obtaining wealth.

It's a constant battle fighting societal values versus your own beliefs. A meaningful life should not and cannot be measure by wealth, yet integrity in this day and age seems overated.

Sunday, December 28, 2008

Generation ME -- Rude

I saw this documentary today on TV and it really struck a nerve with me. Growing up I've always been brought up with certain values and I was taught to be cureous to others. It really stuck with me and I guess having SD makes you realize even more how important it is to have empathy and curtesy to others.

This Doc talks about today's generation of how people are more respectful of groups (wome, minority, aboriginals) but less respectful of individualrs. Particularly the Generation ME that is the generation from 1970's and on, it seems like respect and curtesy has been replaced by selfishness and self satisfaction.

I've always believed that manners is the basic building blocks of social interaction. If a person only thinks about themselves, and entire society are amde of individuals as such, than it would be a world in chaos. But problem is, no one is teaching people manners some basic curtesy such as words like "please, thank you, excuse me" are forgotten by many. Simple gestures to respect the elderly, offer your seat to pregnant woman.

Truth be told I hate this generation ME, taught only to think of themselves and not consider others feelings. Growing up with SD I hated being a child, because many children were selfish and din't realize how mean they can be. I really wanted to grow up becoz I had foolishly thought the adult wolrd would be more civilized and considerate. Little did I know, time has changed as well, discrimination lurks in the shadows. Although some never grew up to have civility and considerate, others did grow up learning that they needed to be more polite and socialable to others.

Unfortunately we live ina society where the game is everyone for themselves. Unless we can instill curtesy and empathy into our kids and the new generation, this society is headed in a downward spiral and misery and unhappiness. Ibelieve change can laways be made in our kids if they are educated properly by their families and reinforced in schools and media. However, I am skeptical as to the realization of such event since these very same kids will be brought up by Generation ME, and waht kids see they learn.

What the future holds we can only hope. The only thing we can do is try to change the lives around us by living by example. Remember this, no one is perfect, but as long as you learn from your mistakesand try not making the same mistakes again, you are growing to be a better person!

PS definately recommend watching the doc. It is a great video for parents who may be uncertain on how to teach their child curtesy.

Friday, December 26, 2008

We are not alone

Sometimes having SD, you feel as if no one really understands what you are going through. But I was talking to someone te other day and it made me realize everyone is pretty much on the same boat. It's a matter of varying degrees but everyone goes through the same feeling at some point of their life. What feeling would this be? INSECURITY...

From insecurity comes the fears. Fear of being inadequite, fear of failure, so much fear to stop us from becoming all taht we can be. Everyone has some sort of insecurity about what they don't like about themselves. Some people try to cover it up by making jokes, some people cannot bring up the topic to discuss, others simply get mad when the topic comes up. No matter how it's dealt with, insecurity is apart of us all, disease or not.

Hence like any flaw, its all about how you learn to deal with it, accpet it, change your perspective on it, and magically your insecurities will be a thing of the past. So next time you feel like no one understands, maybe you're wrong, everyone knows it! Maybe not exactly the way you feel, but everyone goes through it!

Wednesday, December 24, 2008

Happy Holidays!

Its Christmas Eve tonight and looks like its going to be a white xmas this year here in Toronto. I'm not a religious person but the Holiday season is always a great time for family and friends to gather. For me, its a time to share and reflect on the year past.

Personally, I am really glad I started writing this blog, I've gotten so much great feedback and I really hope it is helping others like me and families of SD to get through the rough times. I am a true believer when it comes down to"there's not much you can do except to be there for someone when they need it, even if they don't ask for it". What I've noticed is people generally turn a blind eye even though they know something is not right. If only everyone cared a little more, this world would be a much friendly world to be in.
Bring some warmth and happiness to those around you, even stragers on teh street. Help out, donate, or even just to wish others well. This season for some can be a lonely time, send a card, give them a call or a visit, doesn't take much but it can make that person's day!

Tuesday, December 23, 2008

Technology on the go

Since I was talking about travelling, I started looking into useful technology for travelling. Interestingly enough, Kurzweil teamed up with the National Federation of the Blind to create something called the K-NFB Reader Mobile.

For those of you that are not familiar, Kurzweil is the company that brought you the Kurzweil 1000 - scanned text to speech reader by using OCR recognition to conver images into text and then text to speech output.

Well tehy've really outdone themselves this time, this K-NFB Reader is invaluable to people who cannot see or has low-vision. What is it? It is a camera/cell phone that is able to capture image text and convert it into speech. It is able to read signs, books, menus, even bills.

It currently retails for about USD$2000. But well worth it I believe if it gets you the freedom of travelling independently. I'm hoping to get my hands on one of these guys soon. Can't wait.

Take a look at this video to see it in action!

Monday, December 22, 2008

Travelling -- Part 2

Well let's see, after getting past he customs it sometimes may be difficult trying to find the seat on the plane. (that is if you don't want to ask for help) Some planes have their seat # up right under the overhead baggage so you can lean in to see. But there are other makes of plane that has their seating number around where the lights are so sometimes it might be too small to see. But with my experiences on planes, most people and attendants are relatively friendly.

So I would say that getting to and from various airports are usually not that bad. And if you know a little English, it goes a long way. The most troubles you may encounter is often when you're travelling within foreign cities.

Blind, mute, deaf.. can it get any worse
I think when you can't see, what we often rely on is our ability to communicate, but if you're in a country that doesnt' speak your language, then you not only become blind, but also deaf and mute. Now that's a scary thought.

So how can we get around it? Well if you want hi tech a GPS always helps. But best way is to map out where you wnat to go so you're not trying to wing it as you go. If you know where and what you're looking for, it gives an extra sense of security even if you may not be able to speak the language. No matter what, rule of thumb I would say is to remember where you came from so if for any reason you become lost, at least you can back track. Using large landmarks can also be a good location indicator. But when in doubt, have a written name of your hotel or destination so you can point to and ask.

Clueless about what it is...
Not being able to see, oneo f the worst places to be in is a museum. It often feels like I am missing such a big chunk of exploring things. Why you may ask? Well simply at museums I can't see the explanations. It's always frustrating staring at a piece of artifact not being able to know what it is or its history. Same goes with aqarian or zoos, the inability to read explanations puts a lot of stress on the back.

Money, Money, Money
Adjusting to new currency is also a pain. Although I must say some currency are more low vision friendly than others. Personally I'm a Canadian and I like our dollar very much. It is distinquishable by colour and has a very large roman numeral indicating amount the bill is worth. One the contrary the US dollar is less friendly since the font is quite small and it is difficiult to distinquish otherwise.

Then you have the problem of dealing with coins, its bad enough having to sort through them, but more often than not, its almost impossible for me to see the value of the coin. Not to mention cash registeres. Normally you can simply ask the cashier for the total, but in a foreign place, you may not be able to understand or see which could become an issue. Sometimes for me, it helps to count the different coins and arrnge them before i get to the cash register.

Feet is your best friend
Finding bus routes is already a pain. Knowing how to get fronm point A to point B can help minimize the frustrations. Always ha e a good idea on back tracking. And of course not being able to drive is a big downer. Everything from train schedules, suying subway tickets, and everything you will be constant reminded of how much easier things would be if you can only see.

Sunday, December 21, 2008

Travelling may sometime prove to be a challenge

Not being able to see road signs and street names or bus numbers makes travelling extra hard. I'm one who loves to travel, but often fearful of being on my own, especially in a foreign place.

Mobility around my city and few other cities that I regularly visit is not so much of an issue. But there are things that are difficult sometimes. For example, waiving for a taxi or seeing what the meter says on when looking to pay the driver. Even when taking public transportation I am stubborn and would rather get on teh wrong direction train and switch then to just ask someone on teh platform. Perhaps its pride, or simply the fear of rejection. But these are rather minor compared to some of the problems we encounter when travelling in a foreign land.

When travelling, everything is "new" to you so nothing can be recalled from memory. We need to explore and "see" where we need to be heading. Airports aren't usually that bad because luckily I speak English and in most airports you can find someone to help you when speaking English.

Things you must have when travelling (especially if your'e by urself)
- magnifier (regular or video)
This will allow you to read maps, fill out forms, or conuct any reading while outside

- monocular
help to read signs, find roads, search for objects. Will enable you to read the panels that indicate where your flight is, find which counter to check in, or anything else you may be looking for.

Since we cna't see, it is often best if we can determine which direction we need to head in. It just helps to verify if you're heading in the right direction.

-laptop, PDA, GPS (optional but ideal)
Having a computer means easier access to information since it can be enlarged on your screen. You can store maps, use public wifi to search internet. If you have a GPS you may be able to make youre life sipler by having it direct you to your destination.

Stayed tuned to see waht else you'll encounter whe ntravelling!

Tuesday, December 16, 2008

Tech replaces cure?

Since I was sharing (complaining) about not being able to see people far away. I started doing some digging on new technologies and found some interesting prototypes that may be good to keep an eye out for.

For starter Brother Industiries Japan has created a wearable personal Retinal Digital Imaging Display to go on your glasses. What is it you may ask? Well, think Terminator, its able to use low intentisy laser to beam images and text right onto your retina so you can see extra information. Imagine the potentials of putting facial recognition or enlarging any text right into your eyes. All you would need is a simple scanner and the ability to control/navigate any digital devince.

As great as this sounds, it is still in the developing stages and although the eyepiece is relatively small, it is hooked up to a very large piece of equipment to run. Nevertheless we will probably have much more luck with technology than anything else.

2. Video Glasses

Have you ever seen Star Trek? Do you remember LaForge the blind guy with a visor? I think our technology may be very close at least in the low vision portion of the country. Here's why, imagine if we are albe to create a pair of video glasses hooked up to a spy camera on the frame, this way we can transmit/zoom/and forcus on small and far away details like those goggles in the movies.
At any rate, the technology is improving rapidly and things are getting smaller and more portable as the years pass by. Although genetic therapy seems far from us, these technological aids may be able to change our lives drastically in the meantime.

Recognizing People is a Pain

Recognizing faces have always been a problem for me. Sometimes I wonder if they can create a tool to log people's names and faces so the next time you see them it will tell you who it is. Problem is I can't really see their faces in detail. A lot of times I don't even get a good look depending on where I meet them. When I meet a person, I register their "shape", clothes, and possibly voice, but 9 out of 10 times, I wouldn't be able to recall who they are the second time I see them. Usually take several times before I can recognize their voice.

You sort of realize how much you do not see when I look at photos. Half the time I can't even pick out those faces close to me. Or celebrities, going to movies and not recognizing which actor/acress by their appearance.

Not sure if there is a way around this. Maybe in the future they can create some fancy glasses that can store the data and do facial recognition. Or have the ability for optical oom like a camera. That would be great! Otherwise, get a personal assistant to be your eyes, that'll work too! (just like you can have them drive you around too)

There are many things that "sighted" people take for granted that we would kill to do. Seeing someone accross the street and just say hi. The ability to just pick up something and read. To recognize someone you met before. To steal a peak at your notes in a presentation. To focus a camera and jsut look through the viewfinder.

Not to say we can't do any of it, I guess its not as easy to do some of it. We can still pick up a book and read, we just need aids to do so.

PS this is a side note. I'm not sure if its just me, I am completely incompetant when ti coems to having someone finger write on my hand and reading it. For some reason I can never understand what they write, not sure its an eye thing or what~

Sunday, December 14, 2008

Little Experiment

Like any person, oneof the biggest fear is the fear of rejection. It holds us back from even trying because we're too afraid of failure. But here's an interesting tactic you can try to overcome your fear.

Go into any store, be serious and ask for something completely random. For example go into MacDonald's and ask for spring rolls. Do it with a straight face. The reasoning behind this exercise is you knowalready what your answer will be, but it helps to overcome your fear of rejection. You'll realize that being "wrong" isn't so bad. Try it out and feel free to leave a comment.

It takes a lot of courage to try, but you would never know if you don't try at all.

Monday, December 8, 2008

Letting go of anger

I hve a brother that's older than me by a few years. So we never really grew up together, we were always in different schools, if I'm in middle school then he's in high school, by the time I got to high school he was off to university. He doesn't have SD.

And I have to admit, growing up, I was jealous and almost angry at the fact why I was the only one with SD. What can I say, I was an unhappy kid. In some ways I almost resented the fact that I was the only one with SD even though we had hte same parents.

But my brother's a great guy, completely clueless about my condition, he'd always thought I just couldn't see very well, he never really knew the extent or how bad my vision really is. I envy him in some ways, for his ability to keep his innocence.

What I'm trying to say is, don't be angry at others for not understanding, or angry at yourself for having SD. Being angry won't solve the problem, nor will it make the disease go away, so why waste a perfectly good life on being angry at the world? I've learned that anger is a very tiresome emotion, it drains and exhausts both mentally and physically, so I'd rather put my energy into more meaningful activities.

It's ironic in a sense, that only after you lose your sight, that you are able to truely see. I'm only 25 this year, yet I've able to see life from a perspective that normally is of someone around their 50's. Learn to see it from different perspectives, and be grateful you are still able to do so much. It's often that we lose the things we take for granted, before realizing how important they are to us. Forgive others for not understanding, because if the position was reversed, I can't be sure I would be any different.

Friday, December 5, 2008

Coping Tricks #2

I've got alot of response towards my tips and tricks on coping, I figured I will try to write some more. The #1 coping mechnism is using our memory instead of our eyes. Whether its backtracking in a restaurant, on the streets, generally I remember landmarks and even maps so although I can't see the street sign, I pretty much know exactly where I am. So even though I can't drive, I still know the roads pretty well.

Another patient with SD told me that hey would stare at the blindspot if they're meeting someone new for the first time, this way the other person would not ask "where are you looking". It's actually a pretty good tactic especially if you're meeting people for the first time.

Also, since I can't see faces unless they're up close, I recognize people by the sound of their voice andd the way they walk or dress. I've even develped a habit of not looking around so when people say hi to me they won't wonder why I'm "deliberately" ignoring them.

One of the most painful things to do is text messaging. I've got my keyboard memoried so I don't need to kill myself trying to read which letter corresponds to which number. But my phone is quite small so I always have to squint to barely make out the words. It's like looking at the beginning and the end and hope you can guess what word it is.

It all comes down to colour, shape, position are the three major criterias I use to replace detail.

Thursday, December 4, 2008

Better Blind Speakers

I still remmeber when I was in middle school we had a blind speaker come in to tell his story. He talked about going completely blind around his twenties. And how he became depressed but eventually got over it and moved on wit hlearning braile and how to work with his guide dog. He said he is happy now, and I hd the reaction of "yeah right, I don't believe that if you had the choice between being blind and not you would take the blindness".

Here's the thing, I would say I'm doing pretty well in terms of dealing and coping nad living with SD, I am happy to a certain extent. But I don't think there is a part of me that wouldn't take the chance to see again over what I am now. Is that true happiness? I think it is just settling with what you can get, playing the best game given the cards you were dealt. But it always gets to me when people's like "no, I don't mind, I am happy" because I think tha's jsut load of bull.

Conditions like SD is frustrating and NO ONE would ever choose to be sick if they had a choice. So by saying "I'm very happy as is" it's misleading alot of people in a wayespecially those that have a similar condition. What people forget to say is, "hey it sucks but make the best of it", they should teach people to accept and be grateful, not "pretend" to be happy about something that obviously sucks.

Maybe we just need better speakers at schools.

Wednesday, December 3, 2008

Do you see the glass half full or half empty?

I've always thought of myself as a realist, someone who sees the truth and faces reality head on. I don't try to sugar coat things or hold false hope for things that cannot be. But this is one thing I've learned, REALITY is all about perspective.

Like the glass of water in the picture, what is it that you see? You reality is what you perceive it to be. Everything in life is about relativity and perception. Your blindness compared to a typical sighted person is severe, but compared to a completely blind person more than what they can ask for.
Rather than seeing all the things youve "lost", learn to see waht you have gained. It doesn't mean that you will jump up and down for joy thinking you've gained alot, but if you must live life, why frown all the time? Time won't stand still for you to be happy, you need to seize the moment.
That's why I say reality is perception, because SD is a problem because we say it is. It's a gift because we believe it is, or it can be an obstacle if tha's how you want ot define it. By SD is just SD, everything else is our definition and perception of it. Hence by understanding and even altering the defition you put on yourself and SD will help you rediscover a new attitude and perspective on life.
Doesn't make sense to waste time being upset when there are so many other thigns you can be doing and enjoying. Every moment, every emotion, every reaction are all choices. Realize that every choice has a consequence, there's no good or bad, it simply comes down to WHAT IS YOUR REALITY?

Tuesday, December 2, 2008

Work - Believe in Yourself

Everyone's worried and concerned about work. I'm no exception. I've been in andd out of the market for the past two years. Here's what my experiences has shown me, (it may not be the case for everyone though) there are people that will help you and there are people that will use it against you. I've been in situation where I had someone tell me that it's coz your eyes just so I would take the fall when it came to the cut. I was quite upset from that phoen conversation only to realize I became the target of discrimination against my condition. If I had realized it sooner, I probably would have recorded the conversation and sued them for it.

But on the other end of the spectrum, I've also had managers that were understanding and saw past the superficial and was willing to give me a chance. So like any sighted person, its all about seizing the opportunity. There will be obstacles, but then nothing is ever easy no matter who you are. Don't think that you are any different, granted yes there are certain jobs we may nto be able t odo as well (maybe like data entry or cashier) but for the most part, no one can take away your smarts and ultimately tha's what it counts. With a little luck and some hard work, there is no limit as to what you may be capable of.

The key is understanding what you want, what your strengths are, what your interest is, and evaluate what would be a good career choice in which your eyes will have minimal influence on your performance.

For me, I've settled between what I want and waht I can and good at. I went into the marketing. It hasn't been easy, but in some ways I've always known that its not that I can't find a job, its that the right job hasn't come along. Not everything is about SD, the issue of working is just the same for everyone else, its just people like us has an extra sense of insecurity to overcome.

Monday, December 1, 2008

Can we really do anything?

One of the most common encouragements you will hear as a patient of Stargardt's is, "don't worry you can do anything you want." I personally think that is a horrible thing to say, especially to kids. Don't get me wrong, i'm not saying because we have Stargardt's our lives stop, but I think it is important in teaching your kid or yourself to understand the difference between physical limitations and mental fear.

I've been living with SD for more than 15 years, and I still cannot fully grasp what my limits are exactly. Now here is what you CAN do, you can play ball, exercise, go to school and almost everything you can think of. But reality is, you won't be able to play as good as some sighted person, you will read slower than them, but it doesn't mean you shouldn't try to be YOUR best.

The problem I see with msot people, including myself sometiems, is when we think of something new, we fear the unknown and use our eyes as an excuse not to try. It tkaes alot to break that barrier, remember this, you can't live in fear forever, so why not overcome it, wha'ts the worst that can happen.

Even for sighted people, many people say they "can't" but if blind people can do it, there's no reason why sighted people can't. The word itself is incorrect, the best way of putting it is "won't". So next time you decide to say "I can't", think twice if its fear tha's holding you back by choice, or is it really something your physically incapable of doing.

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.

Friday, October 3, 2008


One of the first things you learn when you live with Stargardt's Disease is how to adapt. As a child growing up, I quickly learned how to act normal. Part of it was because I didn't want to have to explain my condition to everyone I meet.

Often I hear people ask, how can you survive. Well the answer is quite simple, you survive because you have to, you adapt to you "weaknesses" and find ways around the problem For example, I usually can't see signs or people, and so when I go into a restaurant I pay extra attention on "landmarking" my location so if I go to the washroom I can backtrack by myself.

I can't really see the music score for the piano but I am one level away from the teacher's certification for piano. My mom told me what notes and from me listenning to the piece ahead of time I know how the rhythm goes and piece it together bit by bit and memorizing all the music.

Much of the adaptaions rely on paying extra close attention to "details" and memorizing the information and use thatas my "eyes".

But there are also adaptaions that I do solely for the appearance of being "normal" living in everyday society. For example, when at restaurants Ioften I am unable to read the menu but I still open and stare as if I was reading. Or when I am at a fast food place I still stare ateh lighted menu as if I am reading wha'ts on the sheet. If I go to a business meeting I still stare at the screen or a piece of paper even when its too small to read for me.

There will be plenty of things you have to adapt to when you ahve Stargardt's, but the moral of the story is that even if you are visually impaired, you can still do things like everyone else, with a little adaptation and modification, you can appear like a normal sighted person.

Tuesday, September 30, 2008

Five Stages of Grief

Many parents say their child with Stargardt's is often angry and acting out. Perhpas this will be able to shed some light on what the child is going through.

The best example I can give to those that do not have Stargardt's is the comparison with death and illness. Ususally when a person faces dying, they go through the five stages of grief.

Denial -- Anger -- Bargain -- Depression -- Acceptance

A patient with late stage cancer may go through such emotions. Now imagine your child having to go through it. Ultimately, its the acceptance of not being able to change or control their own life.

1. Denial

When a child first diagnosed with Stargardt's, its hard to accept and understand what it fully means. Parents and patients' alike often think because the patient can still see that thisis just a misunderstanding, that their child or themselves is nosuffering from this unheard of disease.

2. Anger

Once the child begin losing his/her vision, they often lash out with their temper due to frustrations towards their environment. When I went through this stage, I hated the world, I hated people because they did not have my problem, I hated my parents for bringing me into this world with Stargardt's. I even hated myself for being who I am. I hated the kids always laughing and making fun of things I have to do to see. I nsome ways I even hated relign, I went through a phase of hating any so-called higher beings because maybe these beings were the one that took away my sight. I hated because I coulnd't understand why I was being "punished". For me, I hated everything and everyone because they all remind me of what I am not.

I believe with most people, anger is a very long stage to go through. Imagine growing up with this anger, feeling powerless to change, hating the fact that you're so different from the other kids. That's only scratching the surfacing on the resentment that will build up. In addition to hatred, I went through a brief period of suicial phase, for me, family was what pulled me through the hard times. It wasn't so much that they knew what was happenning with me, but more so I couldn't bear the thought of them standing at my funeral all because I was too selfish to try to live this life.

3. Bargain
Eventually, you reach a point of realizing being angry won't change anything. Then in some way or another, you try to bargain. Maybe its a secret wish that if somehow I can get my sight back I would do something. Although, by now, regardless of what age you are at, you're probably too cynical to trully believe that thereis a bargain you can make to just "be normal".

4. Depression
The feeling of total hopelessness overpowers you. Struggling with the fact there is NOTHING left to do, too tired to hate, bargain, or be anything else. They will struggle. I was faced with this when I was in 2nd year university. I felt the world just had no meaning. I was tired of always having to struggle. I didn't hate anyone anymore, I just wanted rest. Perhaps to disappear, don't get me wrong, it wasn't suicidal, it was just a time of almsot giving up. Its the feeling of helplessness that takes over your life, I still lived but in a way I felt like a shell, being hollow and feeling like a living zombie. Often I look at the world, I get the feeling I'm looking through a glass window, that I'm not really part of it. Even to this day, I still feel that way from time to time.

5. Acceptance
I've always been a person that is very private about my feelings and thoughts. But that's no life at all, I had many friends, family that care a great deal about me. But alot of times I feel like a burden to them, so I learned at a very young age to keep my feelings to myself and put on a smile. For most of my life, I lived behind a really thick wall, I lock all feelings inside so I don't have to deal with them, and if somehow someone digs in, I can feel almost like whatever is inside is bleeding.

This was the case until I met a friend. Maybe it was the right timing, maybe it was time to let go, I can't really say what triggered it exactly, I decided to let all guards down when dealing with this friend. No more trying to pretend everythign is ok, no more trying to smile when I am sad, just try to be myself. Believe me it was probably one of the scariest thigns in the world. In all my 20 years I had never really let my guard down to anyone until then. For me it was the turning point.

Maybe it was his tolerance and compassion that let me know it's ok to be who I am, that I don't need to be strong all the time. It was through him that I learned to accept, to embrace, and to love. He was not my lover, but in some ways he helped me learn to love by accepting who I am. Up until that time, I've always kept distance with people and friends. I understood people, knew many things about them, but in some ways, I didn't let out much about myself. Perhaps I learnedd to forgive myself and finally accept who I was. It wasn't an easy thing to do, I had to force myself to break out of the habit of putting up a wall. But like anything else, this is something that people need to want to do themselves before anyone else can help, it's like what they say, "if you don't help yourself, no one can help you!"

Life after acceptance. Nowadays, I spend much of my time trying to help others, and finally I am happy not because I'm putting up a smile for others, but appreciative of my life and what I have.

Growing up with Stargardt's -- How many fingers

One of the most tiresome things for me was being asked the question "how many fingers am I holding up" and they would wave and sort of laugh. I know people or kids don't mean harm by it, but if you were asked that question by almost everyone you've ever met, you'd understand what I'm talking about. I understand its hard for people to comprehend what it means to be legally blind, because I "look" normal.

Growing up with Stargardt's -- Intro

I once read somewhere that people who were strucken by Stargardt's at a younger age have a better chance of living a "normal" productive and healthy life than those that were affected after they have reached their 20's.

I think it is true, mainly because you grow up not knowing what is "normal". As a kid growing up with Stargardt's, you are just different. But as a young adult who just foudn out the've got this rare disease, it may be too overwhelming to deal with. Perhaps like all things in life, time can help you adjust, but in many cases, people are not willing to let go of their past and face the reality, as a result they give up on their living a healthy productive life.

But believe me when I say, growing up with Stargardt's is no easy thing. Many parents when they first find out their child has Stargardt's, worry about how their child is going to go through school. In reality, school should be the least of your concern. I know, I was lucky enough to grow up in Canada where there are numerous support for visually impaired persons. There are government programs to help subsidize the equipment you may need, talking books and braile libraries, enlarged textbooks to borrow, and counselling and support for getting through it all. Regardless of where you live, even if it's a place that does not have all the support that Canada offers, I can still say almost for certain, school is not the main problem for your child growing up.

Well if School's not the main issue than what is?
Kids, that will be your #1 concern. Remeber back when you were a kid, there are always the "in" group and the "out" group, there is always a school yard bully, well all of that combined with a kid's inability to tolerate and be compassionate / understanding of differences WILL be everything your child needs to go through. And the best part is, there is probably NOTHING you can do about it.

Kids, because they are so innocent, they can be very cruel. Most kids do not understand what it means to treat others as they would like to be treated. To them, they don't see how they can hurt others, they just find thigns to be entertaining or fun to make fun of differences. Whether it's race, gender, or in this case disability, kids are intolerant of differences.

Of course not all kids are like that. There are still rare angels that would go out of their way to help others in need. They are willing to take a moment to delay their work just so they can help you get started.

All in all, its going to be a rough road for your child to grow up, to see the true nature of human beings and face the harsh realities of the world at such a young age. As for you parents out their, its not going to be easy either, to watch your kid upset and frustrated but there is nothing you can do. To accept that there are somethings that we cannot change nor make it better.

Thursday, September 25, 2008

My first diagonosis

Its hard to recall what it was like to be able to see normally now. i remember when I was in grade 1, our school had periodic eye examinations to let the parents know if their child required glasses. Back then, even though I did not have 20/20 vision, I was able to manage to see about 20/25 (approximately the 8th line) but because I did not have 20/20 vision, the school would send home a memo notifying my parents that I may need glasses.

My mom also said, as a child, when I watched tv I would tilt my head down to watch tv. She didn't think much about it, but later realizes it may be because my weaker central vision. I know for a fact that afer Stargardt's had tkaen its toll on my vision, I NEED to use peripheral vision to see clearer and hence my head is always tilted upwards or downwards slightly to help me see better.

Initially, when glasses didn't help restoremy vision to 20/20, my parents thought I had "Lazy Eye" and I ended up going to a correctioanl clinic to rehabilitate my eyes. (Noboday knew better, and lack of knowledge in ophthalmology led to this "incorrect" diagonosis. By this time around Grade 2, my eyesight began deteriorirating. I went down to around 20/30 (around the 5th line). But we still couldn't find out what the problem was, and the Lazy Eye treatments did not have an effect.

However, soon after I went into the clinic, I had moved to Canada. At which time, I began going to the Sick Children's Hospital to have further examinations. Even when I first moved to Canada, I still remember wearing the eye patch for the correction of Lazy Eye.

After my first visit to the specialists in Sick Children's Hospital, they began running bunch of different tests. Eventually, they concluded that it was Stargardt's and there was no cure. They told me it was heriditary and wanted to check my parents to search for hte gene, but at the end, they coudln't fidn anything and concluded it may have been a skipped generation gene that was passeddown to me. By this time I was almost 16, and had pretty much deteriorated down to 20/150 (second/third line)

All I knew was, I was beginning to see less, I had some sort of genetic mutation called Stargardt's, it only happens 1 in every 20,000 people. I hated the world for it~

Tuesday, September 23, 2008

Who am I? Why am I writing this Blog?

I'm 25 this year. It's been 15 years since all of this started. I'm writing this blog hoping it can let others out there have a glimps of what their life will be, or what their loved ones are going through. Its not easy living with Stargardt's but then again there are alot worse things in life.

For those of you that have no idea what Stargardt's Disease is, its a Age-Related Macular Degeneraton. It usually occus in children or young adults. It is a heriditary gene mutation taht is pass on by both parents. The parents may be carriers but not suffer from this disease. It is estimated about 1 in 20,000 people have Stargardt's disease. If you want to learn more about Stargardt's Disease I will put up more links that help describe the disease in futther details.

Why write this blog?

Since I am a Stargardt's patient, I've always kept an eye out on latest news and research or possible treatments. Although skeptical, it never hurts to keep up to date. I've noticed that there are many people asking about stargardt's or parents that just found out their child has stargardt's.

I figured, why not help these people, share some of my experiences, thoughts, and maybe, just maybe, it can make their lives a little easier.