Emotional Health & Progression

For anyone who has gone through an illness or is living with a condition such as low vision or stargardt's, emotional and psychological health is probably one of the most hidden yet impactful part of our lives.  Living with stargardts is just finding a way around inconveniences, learning to cope with all the emotions as a result of society, frustrations, and self worth is a whole other can of worms.

What kind of emotions?
How about anger, frustration, self pity, hopelessness, fear, resentment, and the list goes on. Questions like "why me",  "why can't I do this or be like everyone else?", "I'm never going tobe able to....",  "Idon't know if i can" are all things we say to ourselves constantly.    We talk ourselves out of things we like because we think we cannot do them, or will look stupid when trying,  Eventually you start seeing the world as dangers rather than opportunities.  You begin to hold back and not try to avoid making mistakes.  But the reality is, you are living less and less because you are consumed and controlled by these emotions until you boxed yourself in.

When I was young, I remembered a blind person coming in saying he's come to a point of being happy about his condition and blindness.  Til this day I still question the validity of that statement, many peoplesay they are because they want to create the image of being positive and happy.  But what I can say, in my own experience, I'm learned to be much appreciate about the things I do have.

What can I do to help my child who has stargardts?
Encourage sports activity as long as they're safe physically for the child.  Likely individualized sports such as swimming, running, even gynastics are all good choices.  Alternatively, martial arts and even qigong/ taichi are excellent ways to help anyone balance emotions and stay grounded even when dealing with grief or loss of vision or any other kind of illments.  I personally started qigong about 3 years ago and realized if I had done it earlier, I might have had an easier time working through my emotions and possibly even slowing down the vision loss. (This is abig MAYBE) But what I do knowas a fact is qigon has helped me significantly in blanacing out emotional traumas and helping me reset certain patterns whether it is confidence, anger, or grief.

Another criticalfactor that most parentsdon't realize isthe best way to helpyour child is to work on yourself andyourown emotional issues.  What does it have to do with your child?  Simple, the better example you can set for your kid, the more equiped theywill be themselves when dealing with emotional issues.  Don'tbe the model that they should avoid, be the model that they should look up to. This is true regardless of whether your child has stargardt's or not.  As a strong, emotionally balanced parent, you are much more able to help your child instead of adding more of your own worries and insecurities onto your kid.

Many people will say,  "I'm good and very balance, no need  to doanything"  Here I'll beblunt  and call you out on BS right now.  We as human beings are flawed, if for any reaon you think you're good as is, thatmeans you're lying to yourself and not really willing to face your own demons  If you're not willing to do that yourself,  how can you set an example foryou own child?

Working on emotional issues  is nevereasy.  But its something worthwhile investing beause it will allow you to build up the confidence and find your self worth which will lead to success in all areas of your life from career to relationships and love.

One Last TIP - THINK  POSItIVE THOUGHTS
Remember to train yourself to think about positive things.  Don't let reality fool you to being a pesimist because reality is simply something based on perception.  Your perception will determine waht you're able to accomplish or not, if you're able to think positively, your chances of reaching your goals are going to be much higher.    So success must come from a mindset first.  It's like the atheletes visualizing a win before they play a big game.

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.

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.

Talking to Others withvision problems

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?

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.

Different ways of overcoming obstacles

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.