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.
Thursday, April 18, 2013
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.
THERE'S NO REASON WHY YOU CAN'T DO WAHT YOU LOVE!
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.
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.
THERE'S NO REASON WHY YOU CAN'T DO WAHT YOU LOVE!
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.
Wednesday, October 31, 2012
New Beginnings
Even though it has only been a year. I find that as I get older, my view of the world changes at a much faster speed compared to a few years back. Perhaps it is the realization that our lives are only byproduct of our hearts desires, when you follow your heart, no matter what challenge may arise, you will find a way.
Too often are we afraid of our own possibilities. We live in a society where we are discouraged from pursuing dreams for fear of failure. However, it is those failures that teach us how to be better and understand more about our own strengths and weakness. Don't be fooled by status quo, because most people simply fear the alternative so would rather settle.
It's time for action, because living the moment is the only way I want to live my life.
Too often are we afraid of our own possibilities. We live in a society where we are discouraged from pursuing dreams for fear of failure. However, it is those failures that teach us how to be better and understand more about our own strengths and weakness. Don't be fooled by status quo, because most people simply fear the alternative so would rather settle.
It's time for action, because living the moment is the only way I want to live my life.
Saturday, December 10, 2011
Getting By in Life
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 effort 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.
Sunday, September 25, 2011
Stargardt's isn't something to be fixed!
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.
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.
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