Living with Stargardt's

Getting By in Life

2011-12-10T11:47:00.004-05:00

Today I saw a person who lived her life with passion and hope. It's been a while since I've met one of these kind of people, the kind that lives their lives with their everything. It's been a really long time since I've seen this kind of person around but on the rare occasion I do meet one of them, I'm always reminded of what I've become and turned my back to.

Growing up with Stargardt's, I've perfected the art of getting by. To put enough efort to do above average but never giving my all and holding back in fear of failure. I've lived like this for so long it's become my coping mechanism and excuse. On rare occasions I see a person doing everything they can to live life the the fullest and it just remind me of what I've turned my back on.

I lost the fight in me, and opted to getting by. But at the same time, I'm upset about the person I've become. They say you can do anything if you put your mind to it? But i'm not sure if I can.

Stargardt's isn't something to be fixed!

2011-09-25T20:34:00.003-04:00

Few months ago I saw the movie "Love and OtherDrugs". It's about a young woman and her struggle with relationship while facing Parkinson's. Although the nature of Parkinson's is much not related to blindness, but the idea of living and facing a disease is actually very similar.

Although we all hope for a cure someday, reality is there is none at this moment. It's a harsh reality to face for many patient's and often even harder to accept for family members. What I've seen and come to understand is that no matter how much you want your loved one to be better sometimes you just need to accept the disease as part of who they are and not force them to visit doctor after doctor knowing you will get the same answer.

Even when people know there's no cure, they still chase after doctor to doctor. It ends up being something you're trying to do not for the patient but for yourself. You want so desperately for your loved one to be better but ask yourself this question, IS IT SO BAD TO HAVE THIS DISEASE? Chasing after the same answer is tiresome and exhausting both physically and mentally. Yet many people with the disease will not refuse to see another doctor that their loved one has suggested because they don't want to kill their loved one's hope.

The best thing you can ever say to a Stargardt's patient or any terminal disease patient is to let them know you are there to support them and help make their life easier. Love them for who they are, even if it means they have a disease. Because when you chase after false hope, it tells them that they are not good enough because they have this disease.

No one wants to be sick, but when it is a part of you with no cure, it may be time to accept and love yourself even if it means you are sick. Having Stargardt's doesn't mean you can't live life, it just means that life becomes that much harder. But regardless of how hard it gets, find someone who loves you just as you are rather than try to "make you better". Because what they don't understand is you are good enough, you don't need to be better to be loved.

So stop trying to fix something that hasn't found a cure. Maybe one day there will be a cure, but until them accept that this is part of the patient and love them for who they are.

Talking to Others withvision problems

2011-09-17T14:59:00.002-04:00

Lately, I've had the opportunity to speak with others who also have severe visual impairment. It's given me a chance to see myself in a different perspective.

I tend to be fairly hard on myself, always expecting more from myself then waht is really needed, especilly when it comes to my attitude towards my disability and how I adapt in everyday society. But recently I've had a chance to meet and speak with some others that are also dealing with low vision or vision loss, and all of a sudden, I'm starting to ease off on myself. I realize, I'm doing pretty good given my situation. I smile, I laugh, I live a fairly unrestricted life, I push myself to do more than what is expected, and I learn to deal and face my demons on a bad day.

How do I feel when I talk to others? Truth is, I don't think I will ever NOT be emotional when talking openly about my vision problems. I can't help but be a little teary when I hear others go through similar struggles. Its nice, to be able to talk openly and realize that although your friends and family may have trouble understanding what i is like to be visually impaired, the person you are talking to can relate and share a similar experience as your struggles. It's real comfort when I hear someone who really understand give words of encouragement. I mean not that support from friends and family isn't important, but for most people, they do not realize the amount of effort needed to deal with the smallest things in life.

I spoke with two visually impaired middle aged individuals and it made me realizeI shouldn't be so hard on myself. I see them and I still see emotional baggage. They still have trouble really face and accept their realities. A lot of time I just smile and say, well life doesn't stop because of you or anyone. If we have to live, then try to make the best of it.

The best advaice...

Forgiveness sharing the love, and a open heart. It is only when you lose something you learn to charish what you do have. Those of us that have Stargardt's, its not a curse. Its a gift of sight, it helps you to see the world for waht it is and not the blnket that covers it. For those that goes through difficult hardships and endure, they learn to love more, appreciate more, and can lead to a more spiritually fulfilling life.

For the parents of any Stargardt's patients out there, "its not your fault"... You can't possibily imagine the kind of hardships they have to endure both physically and mentally. So the best thing you cna do is give them words of encouragement . Let them knowthey can do anything they wnt to and that its always better to try and fail then never to have try at all. Even if you fail, it doesn't mean you're not good enough, it just means its not the right thing for you. Don't overprotect, it will hinder them from reaching their true potential because of fear. Love them just the way they are, let them know they don't need to apologize for their condition. Its not anyone's fault.

What does it mean to have Stargardt's Disesase?

2011-09-01T00:20:00.004-04:00

There's no one single answer. Different people may discover they Stargardt's at different stages in their life. For me, I found out when I was 9 while there are other who discovered it even earlier or much later in their lives.

Even though we may all be diagnosed with SStargardt's some people are able to drive and while others can barely see. Some of us lost much of our vision in a few short years while others lose it over a long period of time.

Hence there's no black and white dfinition of having Strgardt's because like all things, there are variations and situational factors.

Regardless of which stage you are at, living with fear is always apart of the reality we face. There's lways going to be a scary thought in the back of the head telling use perhpas we may be blind one day. No doctor can guarentee we won't lose our vision, all they can tell you is in most cases you will only lose central vision and still retain peripheral vision.

For most people, they don't realize the severity of this disease, to them, my ability to walk talk and do noraml things is just.. normal. They don't realize I stare at a menu even though I can't read a word. I nod when they point at something far away and say hey look at t that. Perfect strangers wonder why you stare off to the wall behind them instead of looking straight at them. They ask if I"m talking to them and always has a pzzled and often judgemental look on their face.

I smile, and shrug it off like always. But i guess the worst part about hvaing Stargardt's is more likely than not, your friends and family can't understand you. Not unless they themselves have been through some life altering trauma. So much is taken for granted because we
"look" so normal.

But it doesn't mean you can't have a good adventurous life. It just means everything is that much more harder even just being "normal". There may be things that you can't do, but most things you can. Often the only thing that stops you from it is yourself or people that care for you. They become over protective and deter you from living life to the fullest. Remember that htey mean whell, but also rememter to live your life. Life's not worth living if its lived in fear. Not to say there isn't fear in our lives, but more so not to let this fear stop you from trying.

Maybe being safe is what you want, and tha'ts ok too, just as long as you are happy. Stargardt's taught me to see things beyond the surface, it made me a much more humbler and compassionate human being. It gave me an appreciation for the simplest things in life and the wisdom to not take things for granted.

Sometimes the worst thing a friend of family can do is to tell the person how they should feel. The intentions are always well, but the effects of that statement usually does the exact opposite of good. Trust and support is the best present you can give to any person. A simple belief that they will find their way and unconditional support even if it looks hopeless. And by support I don't men tell them there will be a cure one day, I mean support them and let them know they can still do anything they want. The worst that cn happen is they find out they really can't, but even then at least they tried and for most people that's more important then the end result.

For those who have Stargardt's, no one is punishing you, you deserve happiness just as much as the next person, and renenber that life is often a self fullfilling proficy. So believe in yourself, don't ever let someone tell you you can't.

Advice on oing into an interview.

2011-08-19T12:11:00.002-04:00

There's no absolute answer but this is what I've done in the past. Normally I don't disclose my condition until the very end of the process. However, I do indicate that I can't look straight to let the interviewer know I'm not avoiding eye contact. I mean this may lose some points with people but if that's the case there's not much that can be done. Ultimately, it comes down to the person seeing your ability or seeing your disability.

When I first graduated and tried to look for a job, I usually do let them know before hiring me so that they ahve a clear understanding of what I can and cannot do. As I've grown in my career, I seldom disclose the extent of my disability during an interview since I often find it irrelevant to my ability in getting the job done. Generally, I try to look for a job that I can use computer to do much of the work which then enables me to enlarge and still work like any seeing persons. However, if it might effect your performance and ability to do your job, I think it's only fir for you to disclose partially so that the employer would be more accomadating to your needs.

Reality is, discrimination will always happen whether its in the open or not. Some people will openly discriminate you and others will simply cross you off the list assuming you are incapable. However, once in while you will meet a person who sees your value, if you're lucky enough to find that boss, do your best and that will take care of the rest.

We can't avoid discrimination and it is a fct we are at a disadvantage o other seeing persons when it comes to general office admin work. Thus its crucial that you find something that sets you apart, it would be something that regardless of visually impaired or not, you would not be replaceable.

In my experience, patience and persistence is key. Some people find a great environment to stay in on their first try, others like me go from job to job looking still. Sometimes it can be depressing but I think if I can find the one right opportunity, all the other bad jobs would just be a bad dreams.

It's not easy, and I don't really think it will ever really be easy. But you'll adapt like all other things in life. Finding the right job is not easy for anyone (seeing or not). So don't sweat it, let things take its course, prepare yourself the best you can in building your skill sets and keep trying until you find someone who can appreciate your talents.

What's your faith?

2011-08-14T18:07:00.000-04:00

I strongly believe that faith is a critical element in finding peace with oneself when facing any type of illness or disease. It's the foundation of establishing vlue and acceptance in any patient's mind.

Now is there a best faith that can guarentee inner peace? I don't think so. It could be that I haven't found it myself, but in my opinion, every person has a set of core values which may reasonate closer to one relign more than another. Regardless if you are a Buddhist, Christian, or Muslim, the goal of your faith is help you accept your conditions and find peace and comfort in your heart.

My encounters with relign...
Although I was never Baptized, I've always had to Buddhistm and Christianity in my younger years. It puzzled me when they tell me God loves everyone and yet it still felt like I was being punished with Stargardt's. It made me angry at this "god" who in my mind is punishing me without letting me know or understand what I've done wrong.

In Buddhism, the main idea is about karma. It is a way of thinking where your actions are the seed and your conditions are the consequences of your actions. Because Buddhists believe in reincarnation, your past lives can have an impact on your current life. With this in mind, I often blamed myself fohaving Strgardt's in this life. Perhaps it was a lack of resect and appreciation which led to this life's lost in vision. This kind of thinking in a way, helped me to come to terms and try to ccept and learn hoping I don't make the same arrogant mistake in this life.

But ultimately, faith eventually became internalized whereby I need to rely on myself for my needs and wants. A simple belief can help me get through a bad day, a reinforcement of positive thinking to keep my spirits high. But mostly, if gave me a false sense of control whereby I can be the master of my fate empowering myself to chase dreams or try new things.

No matter which faith you choose to believe in, always remember that you are the key to your own salvation. Any faith is there to help you accept your conditions it can't help you recover from Stargardt's. Faith for me is a way of fighting back those depressing moments.

Struggle between your logic and emotions

2011-07-24T12:13:00.005-04:00

Often what people don't realize about having Stargardt's is on any given day, we may look just as normal as the next person. But if it's one thing life has taught us, appearance can be deceiving.

No matter how normal a Stargardt's patient may look, they are faced with challenges everytime they step outside of their regular routine. There are always new difficulties that needs to be overcome even in life's simplest activities. Wherever you go, there is a constant reminder of the inconveniences of not being able to see.

Whehter is catching a bus, buying groceries, travelling, schooling and learning, everything is related to being able to see. If you're a parent or relative of a Stargardt's patient, then remember not to take anything for granted, because no matter how simple an activity may be to you, often the inability to see my prohibit the Stargardt's patient from accomplishing that task.

It's a challenge to overcome the physical inconveniences, but the real demon is often within. The ability to process ignorance and prejudice becomes crucial to those who has any type of disability. Facing constanto challenges, I often felt a sense of helplessness due to my inability in changing my condition. There will always be good and bad days, some days when I am more emotional, I still feel a ense of sadness, but on other days, my logic tells me I am a very lucky person. One thing is for certain, it will take a very long time before these emotions are trully digested. Most people never come to terms with their life.

It's a tiresome struggle, and perhaps one that will never trully go away. And there's nothing anyone else can do to help except to be supportive. As a parent, friend of relative, be supportive and understanding, even if you may not understand. Give them the benefit of the doubt and have faith in their ability to overcome any challenge.

Support them and they will find their way in due time.

Accupuncture for Stargardt's?

2011-07-17T16:35:00.003-04:00

Since last September, I've been in Asia receiving accunpuncture treatments. Although there has been some setbacks inbetween, I've had close to half a year's worth of weekly treatments.

Why Accupuncture? I have a friend with some eye condition who has indicated this particular doctor specializes in accupuncture for eyes, often helping to stimulate nerves and has had some results in lowering perscription. Although the thought of having needles in my head and around my eyes is difficult to digest, but I figured it might be the only way to help reduce my growing perscription.

The Treament Process. Weekly sessions with each session totalling about 14 needles in both the top of the head and around the eyes. Accupuncture is based on Chinese Medicine's philosophy of stimulating specific spots which is related to a certain body part. The idea is to increase blood flow to that area and allow the body to recover or rejuvanate itself.

My Thoughts. The accupuncture sessions has been trully energy consuming both in body and spirit. The physical pain of having needles in your head is tolerable but still fairly evident. Especially when it comes down to the four needles cloest to your eyes. It feels like the needles were placed deep within the muscles around the eyes and at time s I was afraid if I move my eyes too much it might go into the eye (I think that was more fear than reality) After the needles were inserted, you wait about half hour before taking them out. The physical pain comes from the skin because the skin on your face tends to be more soft and sensitive. In addition, the tiniest movement in your muscles sends sharp pain in the muscle. On days where i have sniffles and allergies, the throbbing pain becomes even more evident. (felt as if i was having trouble getting oxygen to my head) After each session, there is always an unexplanable tiredness that follows, rest and drinking lots of water is recommended.

The mental state of mind was evne more overwhelming than the physical pain of these accupuncture sessions. The hope of improved vision, the sight of other young children being brought by their parents. The unfairness of this world and the desperation of having Stargardt's Disease. Being in that bed is a constant reminder of my condition.

My Results. The only thing I really felt was after each session, my eyes seems to be clearer when looking farther, things seem brighter. But my perscription still remain the same.

I don't relaly know what to think. At this moment I've decided to halt the treatments because I feel it is not worth the pain. Although the real struggle comes when there's is a undying thought that tells you "perhaps you didn't try hard enough or long enough to see a difference" There are some patients there who has received treaments for years, yet I'm not sure what the real results are. But what I've concluded is, if I can't believe that it's going to make a difference, then it would be even harder for the treatments to have real impact.

The pain that accupuncture brings is more than just a physical nature. It brings out hte darkest side of the disease and no matter how much I tell myself, I still feel a mix of anger and sadness.

Maybe one day there might be a cure. But until then I see accupuncture as a way to relieve tension but not as a solution to eye conditions.

A Time to Grieve

2011-02-11T23:20:00.002-05:00

When a loved one pass away, it takes time to grieve and mourn. When you lose your eyesight, it also takes time to mourn that loss. To learn to come to terms that what you had is no longer yours and accept the reality of what things have become.

You cannot expect a child to be happy about a loss this big. I for one learned to cover up my grievances so that it does not worry my parents. But it is more stressful to have to hide your true feelings to the ones cloest to you, it makes you even more isolated from the ones you love and a wall is put up around you.

Grieving is a process, for some it takes more time than others. The worst thing you can say to someone when their down is don't be down, because no one wants to be, often it's an emotion that the person cannot control.

As a parent, tell your kids you know they are sad and that it will take time to recover. Let them know you support them even in the darkest of moments, it's not easy to face these dark moments with tem, because it means you have to be able to handle that emotion as wel, but this kind of support will help you build trust and support for your child.

Having a kid with Stargardt's means you need to be more than just a parent, you need to become mentally mature to handle negative energy and emotions. Be a tree for your child because that's the only thing you can ever do. They will need to face it themselves, but the most comforting thought of all is to know they don't have to face it alone.

Often Stargardt's patients look too normal that you forget. But for us we never forget, because we live our world in a state of blurriness. We can only accept this is our world and find ways to get around obstacles, but I assure you, we never forget.

Different ways of overcoming obstacles

2011-02-11T22:35:00.003-05:00

Recently, I've come accross an interesting type of psycho analysis called "Enneagram Personality." This types of psycho analysis helps to classify people into 9 different personalities under 3 major groups. Once you determine your specific type of personality, it helps you better understand and analyze how you deal with problems.

Whether it is Stargardt's or any other condition, there's always a process of acceptance and struggles that one has to go through. This type of psycho analysis may help you better understand how you can deal with your problems, and also what kind of obstacles you may have.

This is especially important when it comes to helping you find a better way of interacting with your children. If you are able to understand your own personality and their personality, then you can find a way of deducing their troubles and train of thoughts. It also can assist you to find a better solution for you to support them in their journey of overcoming the mental struggles that is associated with growing up or accepting this disease.

I once said that for me, overcomingStargardt's is like learning to face death, it's not just a physical limitation on the eyes, the physical limitations are only the tip of the iceberg. Stargardt's changes people, sometime for the better, but sometimes it drive people into dark corners of their mind.

I've heard of cases where Stargardt's patients push themselves in trying to prove that they are better, their spend their lives trying to show the world their worth, often, you see much "success" in terms of social accomplishments, but I wonder, when all is done and said, are they really happy with who they are?

There's always different ways of approaching the same problem, different personalities is like changing the formula hence you need a different answer, there's no right or wrong, because it's a learning process.

The Race for a Cure for Stargardt's

2011-01-18T21:36:00.002-05:00

Over the past few years, we've been hearing numerous news release regarding the new research and clinical trials being approved by FDA. The two most promising treatments are being headed by two companies, one located in the US and the other in the UK.

The US company (Advanced Cell Technology) is a biotech company that is experimenting with Stem Cell Therapy that has been recently approved by the FDA for clinical trials. The therapy is said to replace damaged RPE cells with healthy cells which are intended to grow into healthy photo receptors.

To learn more about stem cell therapy for Stargardt's patients, view the link below

LVATUG Blog

Accupuncture

2011-01-11T04:25:00.003-05:00

Back in September, I came back to Asia in search of a possible treatment -- Accupuncture. They say that there is a possibility for improvement, and that it has helped individual cases in restoring some vision.

I figured there's no harm trying, (besides money and time and pain) So I decided to go to Asia to find this particular accupuncture doctor.

How does it work?
needles are placed at specific points to help stimulate your body to recover by itself. In the case of the eyes, there has been a number of cases where continuous treatments has proven to improve near sighted neess and other eye conditions such as lowering eye pressure.

My Experience
It's been three months of weekly visit. Everytime, the doctor would put 12 needles around my eyes and at various places on my head. You're probably wondering: Does it hurt? Of course it hurts! It feels like the needles help stimulate blood flow and there's a point where it reaches that it almost sting It's not a sharp pain thought, but a very settle pain that you feel.

It seem like everytime I leave after a session, I can feel taht things become slightly clearer. However, this effect does not last, usually by the end of the day, it is gone.

My Result so far
I came back for these accupuncture treatment to see if it can help lower my perscriptiong (did not really hope for much in terms of curing Stargardt's) After three months I went to do a check up to compare my perscriptiong, it turns out that my nearsightedness has gone down while my stigmatism seems to have gone up slightly. It is still inefficient information to really judge if this can have a positive impact on my eyes.

After Thoughts
It's a mixed feeling I go through whenever I'm waiting for the needles. Sometimes, I keep asking myself why do I need to go through this suffering. Why is it I must endure such pain. It's upsetting emotionally not because it hurts, but it remind meof how unfair life can be.

The only advice I cna say is, I'm lucky to have someone by my side to support me through this. Sometimes, support of your loved ones help make these things livable.

Pursue Your Dream

2011-01-10T06:07:00.003-05:00

One of the lessons I've had to learn over the past decade was that don't let your eyes stop you from doing what you want to do. A decade ago, I chose not to pursue computers on the basis that I shouldn't stare at a computer all day long. A decade later, my job, although not a programmer, consist of me working on a computer. It's ironic in the sense that because of Stargardt's I decided I should not pursue computers, yet I still can't get away from it.

I've always regreted the fact I didn't study computers as my university major, a decade later, I've finally picked it back up and went back into taking some course to get myself reaquainted with it. It took me 10 years to finally get back to doing what I love. And the surprising thing is, I've never been happier.

So my advice is, don't stop when people say you shouldn't, because in my experience, its alot easier doing what you love then to have to do something that you don't like. With technology these days, nothing will stop youfrom accomplishing our dream.

If you're a parent, encourage your child in doing what they love. Don't let fear get in your way and stop them from doing waht they love.

After a year of soul searching

2010-08-04T03:12:00.005-04:00

It's been almost a year since my last post. Work has taken up much of my life and I've been doing some soul searchingover this past year.

It's almost 20 years since I was first diagnosed with Stargardts's. It's been quite the journey learning to cope and live with such a handicap. Overcoming physical and mental challenges and learning to live life from day to day. Its never easy but it is still bearable.

During the past year, I've been exploring matters of the mind, looking for a way to come to terms with this disability. Not that I haven't been looking in the past, but more so turning to new thoughts. Figuring out what I want, and searching for happiness.

Normality is a luxury that comes with a price.

As a person with a disability, there's nothing I wouldn't want more to just be normal. To drive a car, to read a map, to see the faces for passers by, to read a menu at a restaurant, to read a book on the train, all o which comes at a great price to a person like me. Somethings, with aids, you are able to overcome, but overcoming is still far from being normal. What you do not realize is how much effort it takes to simply be normal.

Happiness i all around you, simply need to take pleasure in life's small moments.

There will always be great people doing great things regardless of their circumstances or handicaps. But for the rest of us average folks, looking for happiness in small things will make your life a lot more livable. Being blind doesn't mean you cannot enjoy life, it simply means you will need to learn to enjoy it in a different way than most. Taking pride in little moments and tasks and stop trying to compare to everyone else. It may sound silly, but take pride in life's simple tasks; cooking, singing, running, because there are always someone who wish they can be you.

Take nothing for granted.

Whether its a helping hand from a stranger, the unconditional love of a parent, or anthing else in life, we are lucky to have the support and love from all those that touch us. Make no mistake, we are blessedby these peopleand always remember to keep it close to heart.

Understand and embrace life, only then will you find true happness and salvation.

Looking for a friend

2009-04-01T09:05:00.002-04:00

Recently I came into contact with a teacher who has a 9 years old student struggling with Stargardt`s. I know there are some parents who read my blog and may have children who areliving with Stargardt`s around the same age.

We are looking for someone around the same age to connect over email and become an ePal with this boy. Perhaps share some struggles with each other and beable to relate to one another.
It`s tough dealing with this disease, but technology today has helped to broaden circles and close gaps, hopefully it would be easier going through the acceptance of Stargardt`s or any disease when you are able to share with someone in a similarsituation.

Once again, Request for ePal for a 9 years old boy with Stargardt`s

Dealing with Prejudice

2009-03-28T16:43:00.001-04:00

Whether it is at work or in school, discrimination and prejudice will always follow those that are different.

Prejudice in Schools

Children often lack empathy and understanding for the different. Too often do we see kids picked on because they dress differently, act differently, talk differently and all other reason. The taunting, bullying, and teasing becomes part of the school routine. So all of it makes living with stargardt's that much harder. Afterall, it's bad enough havingto overcome the hardships of being visually impaired in this sighted world. It makes it that much crappier to be picked on and isolated by other kids who wants to be cool at other people's expense.

Unfortunately, this is the realiity of human being. Curtesy, respect, and understanding is a learned trait that links to maturity. Which just means that if you are different, there will always be people who will try to make you a target.

Work and prejudice

As we get older, the prejudice becomes less obvious. There is no doubt in my mind that there is still alot of discrimination towards the visually impaired. Except most of it is unseen, so no one gets in trouble.
Take work for example, I've gone through countless interviews which I can pretty much say, IF I WASN'T legaglly blind, I would hae gotten the job. Reality is, employers are still hesitant to hire someone that is "disabled" given that they have similar experiences and background. Of course no emploer would dare to come out and say, "i didn't hire you because of your sight", after all no one wants to be sued, but it doesn't mean the thought goes away. The only want out of this is to hope taht you meet an employer who will not judge you by anything more than your experiences.

So waht can you do? Not much besides be the best you can be. It's always been my philosophy that "we cannot control other's actions, the only thing we can change is ourselves" So if you are doing waht you can do, forget about those who are narrow minded, because if you are good at what you do, you will find your success and a place that appreciates your talents one day!

Useful Tool for Microsoft Windows

2009-03-10T21:27:00.005-04:00

For those of you that do not know, Microsoft Windows (since Windows 95) had an imbeded function in all their systems. It's a program called "magnifier" If you look above, you will see a screenshot of what the program looks like. It's a strip of window that magnifies whereever your mouse points to.

How do I open the program? Where is it?

Simply go to you Start menu --> all program --> Accessories--> Accessibility -- > Magnifier

Or you cna goto Run... type in "magnify" click OK and it should call the ptrogram as well.

Magnifier with you mouse?

In certain MIcrosoft Model mouse, there is a special function that you can set one of your mouse buttons to act as a floating "magnifying card". This can be very useful because you would be able to open and close the magnifier glass with the touch of a button.

So which model has this helpful function? Look for Microsoft mice that has the "magnifier" function listed on its description. If it's not listed, it doesn't have it! For a list of products that include this function, go to the Microsoft sotre and search for magnifier. Or you can follow the link below to see.

http://store.microsoft.com/search.aspx?q=magnifier

You are as the world sees you? Or are you?

2009-02-26T02:33:00.000-05:00

There's two sides to every story. And the same applies to identity. On the one hand you have "the way you are perceived or labeled as" and on the flip side there is "the way you see yourself to be".
Labels You may wear.The world treats you as you are labelled. People usually act nicer when you show that you are disabled. Sometimes its out of pity, sometimes out of generous gesture, but often its just because they don't know how else to act. They judge based on these labels they put on you. The truth is irrelevant, you are treated by the label you are given, so when they see you as a blind disabled person, they will treat you differently than a normal sighted person. Don't be stubborn and try to change these labels, accept them as how the world is and learn to take advantage of people's generousity. If help is available, why not make good use of it?
Who you really are...Understand that just because you may be labelled a certain way doesn't define your character and who you really are. There is no shame in having a disability, although it sometimes may not feel like that. Be confident about who you are and odn't let anyone tell you otherwise. When you are confident about yourself and comfortable in your own skin, you worry less about what others think.

Perhaps I am only able to say thsi after going through some soul searching and finding my place. It's a process of self-discovery but even if you are just starting to understand, remember this... "believe in yourself, you are unique and you don't have to be who people think you are"

I can't look straight anymore

2009-02-26T00:31:00.000-05:00

One of the issues I've been struggling with recently is the fact that my eyes seem to not be looking straight anymore. The loss of my central vision is causing me to use my peripheral vision and as a result my iris seems to be looking in the direction slightly left or right of the object I would be look at.

This is causing some inconvenineces especially when talking to people. It used to be that I can get away with not telling people about my vision considition. But now its gotten worst, it's sometimes hard to "act normal".

I considered surgery, that is until I found out that its not my muscle that is causing the problem, its simply the fact that I cannot see in the central part of my vision. It was until recently, when I went into the eye doctors that I realized how off my eye is. I didn't reazlie I had lost most of the central vision since everytime i look straigh my eyes jsut automatically adjust and focus. It wasn't until I was doing an eye exam that when they told me to stare at the dot in the middle of the circle that I realized when they asked me to look straight, I moved my eyes around and eventually hitting the blindspot where its in the centre yet I can't see the dot anymore.

I'm not sure if this is omething I simply have to deal with or if there's a way of adapting and working around the situation. A friend suggested focusing on the blind spot and you will know you are looking straight. However, I am having trouble since my vision naturally shifts to focus and see. I'd love to hear others ideas of ways you have learned to overcome this challenge.

Accessibility in Life

2009-02-16T01:31:00.002-05:00

As a visually impaired person, if I had to go out in the world without any aids, it is rather difficult to survive very comfortably. Our ability to adapt relies on a keen sense of memorization to details about our surroundings. Now imagine if we were put in a completely new situation/place, our ability to survive comfortably is very limited since the world around us is not very acessible.

Whether its road signs, building numbers, restaurant menus, grocery store labels, or even a simple price tag in any store, we are unable to see. All of which has one commonality and its the fact that I cannot see without outside aid. Sure thereis nothing wrong with asking for directions or help, but if it came down to how accessible these thigns are to a person with visual impairment, bottom line would be its inaccessible.

I would have to say the two worst things are menus in a restaurant, price tag in any stores. I mena really, do price tag need to be that small, wha'ts the harm in just up-ing the size of the font by one or two pouints, it would make everyone's life so much easier (even senior citizens) You have no idea how much I struggle with looking at the price of a piece of clothing or a product.

The world of the sighted can be a difficult place to live in. It is only recently that Toronto has began taking notice about the inaccessibility of our city. Like I mentioned, the transit system finally decided to implement a system wide upgrade in its stop annoucement program. We put the beeping sounds into the pedestrian crossing trafic signs.

Unfortunately, we still have a long way to go in order to make life more accessible. Whether its online or offline, I look forward to a more accessible environment in the near future.

Staying Mobile

2009-02-15T01:55:00.002-05:00

No matter what city/town you live in in the world. I am sure mobility will always be one of the top issues when it comes to living with Stargardt's. I live in Toronto where the public transportation is considered as one of the top cities in North America. Although to tell the truth its not ideal, but then again I can't complain since it can still get me from point A to B relatively easy.

Take it from me when I say, NOT DRIVING SUCKS. I've hd Stargardt's since I was young, so I never had the chance to drive, although I'm sure if I ever did, I would love it. Afterall, I love the freedom of being able to go anywhere, anytime and in your own private space instead of having to wait on schedule busses.

However when it comes to public transportation, the city has had several accessibility improvements. First and foremost being the stop annoucements on the buses. It may sound fairly insignificant, but but its saved me numerous times from asking the driver to annouce the street name. Yeah, people will help if you ask them, but just having the automated annoucer gives back a certain independence that otherwise would not have been possible.

Although lately, I have been considering alternative transportations. One of which being the electric bicycle/scooters. These new "toys" offer a possible alternative in mobility accessibility. Since I cannot get a licence, I cannot drive a car nor ride a motorcycle. But these electric bikes are a good middle ground between driving a car, and having to take public transit or exercise myself. Unfortunately one of the major downside is that battery technology is still unstable and therefore the elctric bike is unable to travel long distances. Nonetheless, the beauty behind it is since its a hybrid between eletricity and man power, you can always ride it as a regular bike when you are out of electricity. (Now if only they can find a way to regenerate electricity into the battery) Why is it that I can't ride a motorcycle but can ride something like this, the answer is simple, the electric bike usually is very slow and can only go up to 60 km max but often averaging around 30km only.

natural lie detector

2009-02-05T21:47:00.002-05:00

I was watching an interesting documentary and this time it's about lying in human nature. We all ie, whether its white li to help spare others feelings, others lie to make themselves look good. Regardless of the reason, it seem to hae come a part of human nature and everyday life.

So what does this have to do with Stargardt's? Well I'm not sure iits true for others, but for myself, I realized because of my inability to see, I have developed a way of observation method based on body language, voice, and just an overal instinct. It's interesting because it also allows me to detect abnormality in people's behavior, and I guess in a way become nature's lie detector.

Perhaps part of the reason why we areable to detect lies better tahn sighted people is we tend to pay more attention because of th fact that we cannot see, and also, many people may be good at lying with their faces but fail to notice the settle tone and pitches in their voice. They saya key in being a good lie detector is the attention to details, maybe it not so much that eople can't tell if someone is lying, but more so they just on't care. Everyone is so wrapped up in their own lives they often could care less if someone else is lying or not.

Just tought this wasaniteretig topc. Whether its a good or bad thing that we can detect lies, that's a whole other discussion.

View the following docclick below
http://www.cbc.ca/documentaries/doczone/2009/truthaboutliars/index.html

Importance of barrier free communication

2009-02-01T05:50:00.003-05:00

Wagner explored the science behind secrets. It began with an experiement putting subjects into a room to speak as they liked. Prior to going into the room, they were instructed NOT to say "white bear". Sounds simple right? Well, not exactly, the participants went in and spoke as they liked, but they kept finding themselves tempted to say w"white bear". The overal psychology behind this is the more you try to suppress and limit a thought, the more conscious you are of it. This phoenomenon can be a secret, a fear, a temptation, or any other restrictions or parameters. As a result, it shows the importance of barrier free communication.

When a person is able to freely express themselves, they remove themselves from the stress and anxiety of keeping a secret. However, if one chooses to be fearful of their fears, it will only build and amplify itself. So the moral of the lesson is, don't be afraid, don't try to hide something, because the more you try to hide it, the more stress it will cause you. The most you can do is try to free yourself of these restrictions.

I know its easier said than done. But have the courage to confront these "secrets" and you will be free at last. Let go some of the emotional baggage you hold, and you will become a much happier person.

To tell or not to, that is the question

2009-01-25T01:30:00.002-05:00

How many of you wondered if you should tell the person you meet that you have Stargardt's or is visually impaired? How do you bring it up without it being awkward. What i've noticed most if after you bring up this topic, most people sometimes become uncertain as to "what they can ask" and afraid of offending me.

Since I've been job hunting lately, I thought I'd talk about the issue of discloing your disability. Truthfully, if I had a choice, I would like to keep it under wraps until I am hired. It hard not being labelled and you can never really know what the person sitting accross from you is going to think.

But for me, I've been really upfront about myvision or lack there of. Most people will have nice response and friendly about it. Although whether or not it hurts your chances of being hired, I would probably say yes still. We live in a prejudice and sterotypical society, so at the end of the day, you have to expect thse people will be. Is there anything we can do about it? well if you ever get the chance then you might be able to "prove" yourself, but otherwise its good luck and learn the art of moving on.

When it comes to social settings, I don't usually mention it unless its necessary. I try to do things on a need to know basis, and if it won't affect my interaction with this person, then I don't see a need for them to know. But I always find it funny how because I look "normal" and at "normal", sometimes even after telling them about my vision problems, they still forget the next time they see me. Afterall, most people think its bad, they just don't realize how bad...

Revolutionary Road-- Making a choice

2009-01-20T07:59:00.003-05:00

Its a great movie about a couple wanting morein life but settling because they don't want to take the risks. Too often do people fail to acknoledge the choices they make but rather hide behind excuses. They say " I can't because ...." not "I won't because...", they don't want ot admit that it is their fear and insecurities that led them to their choice, they don't want totake the responsbility of making a conscious choice.

Rarely is there anything you can't do, but when youchoose not to, at least have the guts to admit its a choice out of fear and acept what it is you are giving up. It makes me mad seeing people making excuses for their action, not to say I don't do it myself, but I try to live by this. Accept the decisions and consequences of your decisions, accept the sacrifices you make when you make a choice. Acknowledge your fears, try to overcome it, and if you don't wnat to, don't make excuses saying why you don't.

Please don't say "poor me", because you always have the choice to change your life. There's always a choice, it may not be something you like but there are always alternatives. Don't limit yourself by saying "I have no choice". Take responsibility of your actions, have the power to make your own destiny and future.

Do the best you can, and leave the rest to fate or god or the world.

Relationship with someone that is legally blind

2009-01-08T04:37:00.003-05:00

Its never easy having any relationships. And it's even harder to have one when you are legally blind. The person you are with needs to be understanding, because there will be things that you will rely on them for, and there will be things that you cannot do because of your vision.

For example, as much as you can get around in public transportation, chances are you will never be able to drive and the other person would have to be the driver always. Same goes for looking for roads or directions, as good as I am with directions, I am unable to see the road names and it is impossible for me to help especially if its somewhere I've nver been.

Somethings can't be shared because you aren't able to see, like if you're on the road and they see osmething funny, odds are you won't be able to see or know waht they are talking about. There are actions that come naturally to those that can see that they forget or do not realize how hard it can be for those that are legally blind. There may even be times where the sighted person is frustrated because they feel they always have to do certain things.

But no matter what the issue is, don't be afraid to talk about it. Misunderstandings happen when things are left unaddressed. The key to any relationship is open communication, mutual respect and understanding, and love. The same grounds apply for a relationship with a visually impaired individual. Sometimes, you just need to be patient and loving, and the rest will fall into place.

Going to school part 2 - Tips for University

2009-01-06T09:56:00.003-05:00

When I went to University. I received much support with reagards to my disability. Aside from the not takers, extended time, enlarged fonts, and counselling support. I also received funding for much of my equipments (laptops, magnifiers, CCTV, and screen reader programs)

Difficulties @ University
Unlike highschool, often university lectures are held in large lecture rooms with the professor talking while referring to a powerpoint presentation. This made it almost impossible for me to see either using a monocular or my own eyes. A few years back while I was in unversity, there wasn't any portable CCTV cameras that we could carry with our laptop, which meant for the most part I was unable to see what the professor was refering to. What did help was reading ahead of time, it would give you a much better sense of what is happenning and give you a way creating mental images in place of the slides.

Depoending on your chosen subject of expertise, there may be a lot of reading involved. Make sure you give yourself plenty of time to read through since itmay give you an eye strain. Time management and hard work is required to help discipline yourseld in your studies.

One of the dicfficulties is with socialization. Since I was at a very large and scattered university, problem became that I may meet a person and never see/recognize them again. More often than nothing, you meet a person for the first time and never sees them again. Its also makes it difficult to "sit with your friends: since we can't really walk into a lecture hall and look for people.

Library use/research may also become difficult But you can probably ask the librarians for help in locating items. Although some materials may be in library use only, it may be worth your while to simply photocopy and take it home.

My advice to Unversity life is, try everything and expose yourself to what happens in university, there are clubs of all kind and by getting involved you will have a much better experience both academicly and in your life.

Going to School part 1

2009-01-02T10:28:00.003-05:00

Well been off topic a little lately so I thought I'd write more about SD. I went to regular schools throughout my life. Did I struggle? Not really. I would say I've been lucky enough to be blessed with good logic and was taught very good math fundementals at a young age which made my life a whole lot easier. But for the most part my marks were consider above average.

Its not to say I didn't have help. Ever since I was diagonosed with Stargardt's I was assigned a "speical teacher/counsellor" to meet with me every few months and made sure I was doidng ok and any request I had for accomadations were being met to the best of their ability. Although there wasn't much to do, the greatest help I got was having large print math textbooks. That made my life so much easier.

The biggest Challenge...
I think teh biggest challenge for me was reading. IT wasn't that I couldn't read, butit took a long time for me to read. Since I can't see that well, it takes me an extra few milasecond to look at a word and read word by word. Scanning text is almsot impossible for me. That's why I always dreaded reading novels, and to this day I still don't have much patience for reading novels.

It wasn't jsut reading that was troublesome, seeing the chalkboard and notetaking was difficult. My mom even helped me copy my notesandd I had those special paper that wrote two copies at once so when my friend copied notes from the blackboard she was writing for me as well.

Cursive writing, or script has always been a vice to me. Even to this day, it takes an extra effort for me to read. If the person's writing is nto clear, it would take me long time to "deciper" it. And even now, I write in print for ease of reading.

Visaul Aids,
I had quite alot of things to help me. Before the time to computers, and video magnifiers, I had a handheld magnifier, a monocular, a CCTv, speical dark line single paged notebooks, those dual page paper,all of which made my life a whole lot easier. I wrote notes and everythign in black ink pen because it was easier to read. Sometimes I would receive photocopy notes, or even enlarged music score for my instrument music. Although with al lthe aids in the world, the first thing ou need to learn is to have patience since it usally does take longer for us to work on a project or anything.

To Be Continued..

Tolerance

2009-01-01T15:03:00.002-05:00

I used to think tolerancce is a virtue. But more and more I'm beginning to wonder if it just gives people a reason to step all overyou. In this selfish society we live in, tolerance for bad behaviour COULD be the cause of why these behaviour exists. If you let people treat you badly, in a way it is telling them its ok to do so.

I would like to say I have a very high tolerance of bad behaviours because I believed and hoped that people will correct their actions by themselves. But I finally realized how foolish I am to think that.

So my advice to all, don't tolerate crap, in this society, the one who does not speak will be the loser. Just because you CAN tolerate something doesn't mean you SHOULD. But its a fine line between being understanding, and tolerating bad behaviour. No matter what, don't lose respect to yourself, otherwise no one will respect you.

some random thoughts

2008-12-31T00:51:00.004-05:00

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.

Generation ME -- Rude

2008-12-28T00:05:00.003-05:00

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.
http://www.cbc.ca/documentaries/doczone/2008/rude/

We are not alone

2008-12-26T00:11:00.005-05:00

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!

Happy Holidays!

2008-12-24T12:44:00.004-05:00

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!

Technology on the go

2008-12-23T10:59:00.000-05:00

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!
http://www.knfbreader.com/video/CNN1.php

Travelling -- Part 2

2008-12-22T21:09:00.000-05:00

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.

Travelling may sometime prove to be a challenge

2008-12-21T20:22:00.000-05:00

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.

-compass
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!

Tech replaces cure?

2008-12-16T17:01:00.001-05:00

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

2008-12-16T01:39:00.000-05:00

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~

Little Experiment

2008-12-14T12:48:00.000-05:00

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.

Letting go of anger

2008-12-08T00:00:00.000-05:00

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.

Coping Tricks #2

2008-12-05T11:35:00.000-05:00

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.

Better Blind Speakers

2008-12-04T14:45:00.000-05:00

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.

Do you see the glass half full or half empty?

2008-12-03T15:47:00.001-05:00

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?

Work - Believe in Yourself

2008-12-02T13:43:00.000-05:00

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.

Can we really do anything?

2008-12-01T21:16:00.000-05:00

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.

Faith

2008-11-27T03:03:00.001-05:00

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

2008-11-27T02:34:00.000-05:00

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.

Change in my personality Part 2

2008-11-26T08:34:00.000-05:00

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...

Change in my personality Part 1

2008-11-25T09:22:00.000-05:00

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

2008-11-25T09:13:00.000-05:00

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!

First Time

2008-11-24T08:22:00.000-05:00

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)

Stop with the Never Ending Tests

2008-11-23T09:55:00.000-05:00

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.

Adaptation

2008-10-03T02:34:00.000-04:00

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.

Five Stages of Grief

2008-09-30T07:06:00.000-04:00

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

2008-09-30T03:46:00.000-04:00

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

2008-09-30T02:53:00.000-04:00

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.

My first diagonosis

2008-09-25T08:13:00.000-04:00

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~

Who am I? Why am I writing this Blog?

2008-09-23T17:37:00.000-04:00

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.