Friday, December 27, 2013

How to be Happy When You're Blind or Has a Disability

Happiness is an illusive feeling that we all seek as humans.    No matter age, gender, race, abled or disabled, we all want it.

One might ask, how can you be happy when you have less than others? Just as in the case of the rich man vs average man,  its not about the  actual number that determines  how rich you are, its your perception that will be the key to happiness.  Add to this a sense of gratitude, then you've got the recipe for happiness.

Sounds simple right? Not quite.  If you have a kid who's suffering from some sort of disability, (stargardt's or otherwise) its not as straightforward as telling them you should be grateful.  If anything, you'll get the opposite effect and often trigger anger.  Hearing someone privileged talking about poverty isn't the most convincing story, so the worst thing you can do is tell your child they should be grateful compared to the rest of the world.  Even though this is true, that being grateful will bring happiness, it not really something that can be told.   As a teenager myself and even to this day, even though I am grateful for what I do have, I really don't like it when people tell me that I SHOULD be grateful or compare others to me.  For me, I feel that its almost condescending to me because when people compare, (even though its in good intent) I almost want to say to them why don't you bear the cross and see how well you deal with it.  We all have to take it our own pace, and being told to be grateful is almost insulting especially coming from an outsider's perspective. 

I think what needs to be recognized is that its not an easy process to see the light in this dark tunnel, and part of what I hated about motivational speakers is they NEVER talk about the dark side.  I don't buy for a single second that there aren't bad days, but the fact that no one talks about it really takes away any credibility that the motivation speaker's content has.  

Although gratitude can't be told, it is a choice that can be made.  so empower your child to CHOOSE happiness.  Just because there's a disability, doesn't mean they don't have choices, they can choose to see it as a half empty half full glass.  Help them understand that although they are disabled, it doesn't mean they can't do what they want, give them the hope and of any kid.  Encourage them to try things even if there may be limitations on what they can do, there's no reason why they can't do something and they should know that.  Teach them to protect themselves but be open to go for their dreams. 

Kids typically don't know what the meaning of can't is until an adult tells them so.  Parents often rob their children of dreams because they were too scared to pursue their own.  Their own fears of failure is passed on to their kids and the child become scared of doing things.  Often its not the disability that is the limiting factor but the negative beliefs that surrounds the condition which prevents the child from doing what they want.   And please don't justify your own fears by saying its for their own good or you're trying to protect them.

Growing up being disabled and different,  it's hard not to get picked on.  The best support  you can give is let the child understand they should never be apologetic for who they are.  Believe in themselves and go after their dreams no matter what others say.  Give them the strength to face the judgemental world.  When others are ignorant, this I when your child needs to stand up for him or herself. 

If you as a parent empower your child, then they will find their way  and come to terms with who they are.  Encourage them so not to view disability as a limiting factor but instead a factor that needs to be addressed. 

Be all that you can be, and happiness will follow.

Friday, September 6, 2013

Will I be Blind in the Future?

Since I first started seeing doctors for Stargardt's, the most common thing I would hear as word of comfort is "usually stargardt's patients won't go blind."  They say you'll lose most of the central vision but should still have in tact the peripheral vision. 

As I grew older, and finding my sight to slowly slip away bit by bit, I can't help but shake the feeling I may go blind one day.  No doctor can promise me my sight, and even if  they were wrong about not going blind, it's of no real consequence to them. 

I spent the past few years  trying to shake the uneasy feeling of possibly losing my sight.  Needless to say its an struggle of falling into deeper desperation and hopelessness.  It's almost like watching a car crash as it's about to happen but feeling helpless to change it. 

There are days I would be in dark hole absorbed by fear of the unknown.  I'm already a pretty optimistic person, but during these moments, it felt like history has repeated itself, only this time  its not about losing sight its about becoming blind.

The fear of being blind stems from uncertainty.   I began to feel as if I was on a clock, racing against what little remains of my sight.  Perhaps one day, it will deteriorate to the point I will lose the last remaining light that I see.

There's very little that we can do to change the situation.  So rather than continue to worry and sink into the spiral of desperation, I chose to embrace what I have at this moment.  Maybe I will go blind one day, Maybe I have 10 years, 20 years, who knows, all I know is  the only thing I can do is to live with no regrets and let the rest take its course. 

Living in fear is no life at all.  So rather then spending my time worrying about what may or may not happen,   I choose to accept that which is part of life and make the best of what I've got. 

Deep down, I almost feel I will eventually lose  my sight.  Even normal sighted people  may lose their sight with age, our condition probably just makes it worst.  All the more reason why you should do all that you can while you still have time, because you never know when this bomb may go off.

Monday, July 22, 2013

Having Stargardts is a constant battle with your fear...

Startgardt's,  like any terminal disease  comes with a fear factor.  The patient is constantly confronted with ideas of self doubt and insecurity.   Fear is a good emotion to have, but too much fear paralyzes us in our ability to achieve.  So the trick is to learn to find the balance of having and coexisting with fear.

Often we set limits on what we can do because of fear.  There are things that may become dangerous and should be carried out in a cautious fashion. But most of the time, its our own fear of failure that inhibits us from carrying out what we want to do.   It isn't a matter of we can't, its a matter of we won't.

But on the flip side of fear, there's limitless possibilities.  Like any sighted person, a stargach  potential and possibility in life.  All you need to remember is that it's possible, that your dreams can be achieved.  But  like any possibility in life, it comes with a consequence as well, having stargardt's does often mean that it becomes harder to achieve.  Anything is possible you just need to keep trying and never give up.

People will tell you otherwise, say its too hard, but nothing you put you mind to is impossible.  All you need to do is believe and have persistence.  All the rest will come.

This is a great speech by Les Brown.  Hope you enjoy it.

Thursday, April 18, 2013

After 20 years of Stargardts and Self discovery

Yesterday was my 30th birthday.  The importance is not so much in the number but where  my mind is at.  Over the 20+ years having stargardts my life has been a complete emotional roller coaster.  Growing up hating the world I was born into, to learning to forgive and accept who I am, to growing into who I am and just being happy for  what I have.   If you really look, my sight has only gotten worst from compared to before,  yet learning to shift my thought patterns and mentality has turned my life around.

First 10 Years
The first 10 years of my life, I was blissfully ignorant to what I would have to face in the rest of my life - Stargardt's disease.   I grew up like any other child, unaware that I would soon become legally blind.

The next 10 years 
My teen years, its not something I would ever wish upon any child.  Growing up being different is a lonely path and kids are ignorant to other's feelings.   Being visually impaired in a sighted world especially going to school will mean they will face bullying and harassment,  come face to face  with what may be the worst  in human nature.

Looking too normal means  everyone will  pick on you for being different.   But nothing is as bad as trying to survive a constant questioning of self worth, self doubt, and a bunch of other negative feelings and possibly hatred towards the world.  It's almost impossible for a child in their teens to understand what possible reasons there could be for  this (stargardts) to happen to them.    I remember asking myself what I have done to "deserve" being visually impaired. 

I spent most of my teens trying to protect everyone around the me from the darkness I felt.    I learned to lock the darkness deep within and built fortified walls around it to  keep it from escaping.  I learned to mimic smiles, to fit in, to do everything in my power  to forget the pain.   I learned to not care just so I can get by.  I couldn't bring myself to hurting myself because I felt it would cause too much pain on my family.  So I did the one thing I knew how, packed everything up and lock it deep within.

The past 10 years
I realized being numb to the world is no life to live.  I didn't have any strong feelings of happiness or sadness.  I realized I didn't want to live life being like the walking dead.   So I made a choice, took a leap of faith, I picked someone and choose to open myself up without holding back.  It was the first time I exposed myself,  first time being truly vulnerable, first time being free.    In some sense, I was lucky, if I had trusted someone who didn't accept me for who I am, perhaps I would have gone back into my shell and continued to numb myself. 

Learning to trust was difficult, learning self worth and value was a work in progress.  But making a conscious decision not to continue the life I had was what turned things around.  In that relationship, I loved, lost and learned to let myself open up little by little. 

Taking what I had learned, I wanted to help others.  I ended up trying to help a lost soul almost in a way to make up for what I didn't have.  And years gone by only to realize,I can't change my past, no matter how much I try to help others.  Bu realizing you can only help those who wants to be helped.

And finally, this past 3 years, I've tried to zoom into myself.  Understanding values, understanding vision.  I learned that perspectives will make or break a person.    Finding self value and remembering your dreams should be part of your life.     The key to liberation lies in gratitude.  The ability to see the world in a different way and mentally making the choice to believe will be the critical factor about any one person to succeed.

Tuesday, April 16, 2013

Your Future: job stability and security

Growing up in a traditional white collar family, I was taught to look for security above all else.  Traditional Asians think being a doctor, engineer, government worker or banker/acountant are the idea and secure ways to live your life and making a living.  My parents simply hope I would get a job and settle for the rest of my life.

Except I beg to differ.

Settling only makes them happy but to me its torture.  I hate inefficiencies, I hate lack of creativity, I hate stupidity and mundane work, and I can't bring myself to become one of those people who can't wait until the weekend because they hate their job and can't wait to retire or quit.


I always believe in the fact that if you are doing something you love, you will find a way to make money.  There's no reason why you have to settle even if you are visually impaired.    Being successful has nothing to do with physical disability but has everything to do with your mental attitude.  If you feel you can't, then you will never achieve what it is you want.    If anything, being visually impaired helps you cope with the hardships you face when chasing a dream. 

I've failed many times.  Been rejected from jobs, and even put down by people of position.  But all of that has made me a stronger person, a smarter thinker, and a committed lifelong learner.   

As parents or family members, please don't force your kid of loved ones to settle for anything less than their real dreams.  It's not going to be an easy road, but  what they need is not discouragement  and your fears. Believe it or not, your fears will transfer into their behaviours, your doubt and disbelief in their abilities will become the foundation of their self doubt.

I've spent 20 years trying to un-lesrn all the education taught to me from people who fear their own future.  If anything, it takes so much more energy  to erase those negative thoughts than to just simply follow you dreams.

If you are a parent, encourage your kids passion.  Help them achieve their dreams, and believe in them like you would want them to believe in themselves.  Installing your fears will hinder their true potential.  After all, do you really want to be the people who made them unhappy?  Who was the one that influenced them to give up on life and dreams?

Life is more than just about settling.  So security and safety will come if you're in something you love to do.  All you need to do is believe.