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.