Peace At Last

I never thought I would ever get here.  I've always thought my stargardts condition would be something I'd have to carry with me.  Up until recently, I've been able to let go of most of the frustrations and accept the situation.  But I still saw Stargardt's as a point of pain in some ways.  There was always this underlying almost righteous lilke anger of me being  trapper by this disease.  And in some ways it is true.  As our perceptions shape our reality.

Seeing the Light

No, I'm not talking about relign, but if that's your thing that's cool too.  I'm alking about crossing the ridge  and letting go once and for all the anger that I've held on since battling this disease.  In some ways, that is the key:  I'm battling it and not embracing it.  When you fight and resist then you haven't really  fully accepted as part of you, you see it as something that had invaded your life, an enemy to be fought off.  But we're stuck with Stargardts (until technology advances) so it's here to stay whether we like it or not.  What if instead of seeing it as an outsider, see it as part of you, like you're tall, brown eyes, dark skin  or whatever trait that you are naturally born with.  These traits  are just a part of you, neither good nor bad, nor is it something that needs to be changed or fought off.  When you are able to hit this point, then the disease itself is not longer a disease but just another trait, it doesn't define you anymore.

How do I got here?

The answer is LOVE and Surrender, When you truly surrender and accept the blindness as a part of you but also understand it does not define who you are, you'll be able to let the anger go.  I've been angry because  a part of me felt cheated in not being able to see.  The thing is, expectations  of "I should be able to..." sets us up for frustrations if we're not able to meet those expectations.  We are rarely upset if we are shorter than others because we accept that's just our height.  Of course height doesn't affect our daily lives as significantly as eyes, but its the same.  In life we're dealt a hand of cards that we need to play, getting angry with the cards isn't going to make it an easier game.   Learning to love ourselves as we are  rather than seeing it as us+stargardts.  

Trust me, it was anything but easy.  I've spent a good chunk of my adult life trying to untangle the mess that Stargardts has caused in my life.  Everything from self worth, confidence, identity issues, anger, frustration, fear and more.  The truth is, everybody have these emotional issues, but being blind does amplify their scope.  

What's the Hardest Part?

Letting go of the anger.  It was probably one of the hardest things I have ever done emotionally.  Although i was in acceptance of the fact I'm blind and can't really be normal, the anger is really about the idea of   "I'm blind and robbed of my normalcy."   I think it's taken over so much of my life that I was used to the identity and label of blind person.  But I've managed to flip it around o "blindness is a part of me but not my identity."  It literally meant I needed to give up my "old" identity and embrace a new definition of myself, and if anyone has ever done that you know how difficult it can be.  

There's probably no way (that I can think of) without having to surrender.  Because if you hold on to any bit of the old identity, it'll be near impossible to embrace the new one.  It was a righteous anger and its true that what happened  has taken  a lot from me.  But if I choose to see the story as in what it has given me instead of focus on the loss, then life becomes simply beautiful as is.

Conclusion

Life will happen regardless of what your perspective is.   Why put yourself through so much suffering when you can choose to be your own salvation.  There's a saying that goes "pain is inevitable, suffering is optional".  Our "pain" of being blind is a inconvenience that is true, the "suffering" we torment ourself with  is  just a matter of choice.  If you've just started and is learning to cope, its ok, there is a grieving stages that are needed.  But once you reach some stability, the continued suffering  can be as simple as choice.  

For me, letting go of the anger has changed my outlook of life itself.  Even my interactions with people are noticeably more  upbeat.  (And it's not like I was gloomy before either, I was been very positive particular past few years)  Now, I see love and beauty in the world in the smallest things. I see my own blindness as a part of me,  not to be shunned or judged, its just me.  And at last, I'm at peace with myself.

Stargardt's triggering emotional stress and other health problems

To be honest, I don't think there's anyway around this.  The emotional depth that one has to go through  with the loss of vision is not something you can omit or bypass as much as we like to.  What we don't realize is the unseen effects resulting from these emotional traumas.

How it started for me?

As I always say, this is my experience, may not be the case with everyone.  I'm writing to help those better understand and be aware of things that may be applicable to them.  

My vision started to deteriorate by the age of 9, I  had lost most of my central vision by the age of 13.  The loss of vision is overwhelming to any child growing up, as if the identity crisis of an average tween isn't bad enough,  Stargardt's is like pouring gas on top of fire.  For the longest time, I dreaded the fact I was alive, but I couldn't bear to hurt myself since it would likely devastate my family. Sometime I'd almost wished something would happen to end all that misery.  It's not a pretty place for a child's state of mind to be in.  And if I had to guess, that is likely triggered some of the other health problems I eventually had.

Health Issues

My guess is the "semi depression" states I went through began to affect my body in invisible ways.  I gained weight, eventually diagnosed (after 15 years) a chronic case of sleeping disorder known as narcolepsy, and hormonal imbalances cause sing other complications.  OK I'm not saying that people with stargardt's will all have these problems, I'm saying that the emotional ramifications of losing your vision may likely trigger other unforeseen health issues.  For myself, the depression like states probably kicked my body into autoimmune like status where slowly my body is killing itself.  

I'm a strong believer in the body mind connection, I believe how your feel and think has tremendous impact on your body's immune system.  And even scientifically we know it has a direct correlation.   

So what am I trying to say?

These emotional episodes may have serious lasting effects on your body.  For me, I'm trying to undo at least a decades worth of emotional baggage that has taken a toll on my body.  The bright side of it is, yes you can do something about it, and no its never too late.  But like everything else about having Stargardts, things are just a bit more harder and complicated than "normal".  If anything, I would say you have to untangle the emotional mess before you can reverse the physical ailments.  

How do you get through the emotional mess?

One day at a time.  I'll write something on this topic another day.  

Stargardt's hidden health problems

What you don't hear about with your Stargardts.  

We all know stargardt's is a condition that causes a patient to lose central vision due to the body's inability to clear toxins that build up in the eye and eventually scarring the retina and effecting the vision. But what you likely don't know or heard about is its hidden  effects on the rest of your body.

Physical Effects of stargardt's
Keep in mind what I'm proposing may not necessarily be applicable to EVERYBODY, but I do want to drive some attention to these issues so people can be aware and possibly proactively prevent them before it accumulates.

Not looking straight

Seems like a relatively simple issue from losing central vision.  But there are quite a bit of complications.  See, not looking straight means you are probably compensating to use the peripheral parts of you vision, this probably also means your head is constantly in a tilted  position.  (up, down, or to the sides) to help adjust for the blind spot in the middle.

What I've noticed for myself is a slight tilt downwards and to the right side.  My neck  is tighter on the one side and cracks easily when i try to fix it into "proper alignment".  So why don't I keep it "proper" you may ask?  Well its simple, in the natural position, we are looking straight and directly into the blind spot, and unless you want to be walking or be "blind" most of the time you will adjust and naturally tilt slightly.  It may  seem harmless, but these slight tilts will build blockages in the circulation of your blood and tightness in the muscles.

WHAT CAN YOU DO?   

Be aware and mindful.  A few moments of resetting will go a long way in helping to main and reduce the effects of muscle tightness.  Stretching exercises, meditation, Chinese qigong, or yoga are all great ways to help reset the body  and be mindful of what your physical posture is.  It will also help release the tension build up that can lead to neck shoulder problems and possibly even headaches.  Regular exercise and sports will help too but to a lesser degree because often you are not resetting the condition or you may even be reinforcing it.  Essentially, when you "need" to use your eyes for something, chances are your posture and alignment will be off.

MY OWN EXPERIENCE...

Being a person who works in front of a computer all day, I've experienced serious issue with my neck, shoulder and back due to posture and the "head tilt" issue.  I tried yoga and massage which helps but not been sustainable as in it feels better initially but will go back to the discomforts in 2-3 days max.   A few years ago, I started doing Chinese qigong, it's made me much more aware of my body's alignment, and the circulation of qi.  

What I've realized is my "normal" posture  actually causes a poorer circulation which causes muscle tightness and hte cracking of the neck is restoring part of the circulation but it keep cracking because I keep going into the poorer posture that  prevents it from a good circulation.  Always remember, in our most natural  posture, (upright and loose) our body's blood and qi is able to flow smoothly, our muscles are not tighten or stressed.  But when we are out of that proper natural alignment, (tilted, slanted or imbalance in left or right side) Our muscles tightens up, and circulation is poorer.   A prolonged poor posture then results in certain muscles becoming inflexible and unable to release which will reinforce the poorer posture and circulation and becomes a vicious cycle.  At this point,  trying to do the natural posture will almost feel awkward because your muscles have adapted to the bad posture and  the the balance between your muscles is off.

CONCLUSION

Like stargardt's, as long as you are still using your eyes, this problem will likely persisted.  Believe me its extremely annoying but it is just another thing we need to learn to live with. Being mindful and trying to reset it will go a long way in preventing it from affecting your quality of life.  No one like shoulder, neck pains or headaches, for some its "manageable" but then the question comes down to do you want to "live and manage the pain" or do you want to not have pain.  The choice is yours.

6 Tips on How to be Legally Blind

1. Don't be afraid to be different. Accept your condition
Living with legally blindness is hard especially in a sighted world.  You have to come to the realization that as much as it suck (and trust me it sucks a whole lot at times) legally blindness is part of who you are.  (Hopefully until there's a cure in the not to far future)  If you keep wanting to be "normal" (whatever that means) then you will be trully unhappy in your life because it's almost impossible to meet that expectation let alone try to exceed it.

Accept your differences and learn to see the beauty it can bring. I know you're probably thinking what beauty is there if I can't see, and yes I've been there too.  Its simply a matter of perspectives, not seeing has allowed me to look deeper into people's hearts (past the glamour and superficiality).   A shift in the mind goes a long way in helping you find peace and happiness.    It's ok to be different,  from the rest of society, its not easy, but its ok.

2. Physically take note of your surroundings'
 Goes without say, one of the biggest annoyances sometimes is finding washrooms.  What seemingly is a simple task that people don't think about, sometimes can bring about stress and embarrassment of not finding the right washroom. So quick tip is remember your location and take note of where the washroom is.

Same thing goes with directions.  Photographic memory of close by landmarks and possibly maps can help you find your bearings easier and less stress.  Remembering where things are take stress from having to try to find things.  Even small objects athome, if you can keep a consistent habit, it'll save you alot of time in trying to find things afterwards.

3. Technology is your friend.
 The rapid advancements in technology can help to make our lives easier.  A good cell phone camera with a larger screen can work wondering if helping to read labels, print, or things far away from you.  Plus it gives the added advantage of a GPS which means you don't have to try to read the small font on road signs.

Get familiar with ZOOM or text to speech functions.  Whehter you're on your computer or even your cellphone and tablet, zooming can help you quickly navigate while text to speech can help you read info faster.    As the technology progresses, we are seeing more and more innovative assistive devices and functionalities.

4. Understand people will not understand.
There is an innate isolation that comes with any form of illness or diseases.  People are generally self centered and can only relate to experiences within their own experience.  Just like you will not understand how a paralyzed person feels and experiences, it's difficult for most people to understand how we feel.  It's no one's fault but it is a reality.

There's going to be days of frustration, for the most part if you do not have expectations of people being able to empathize or comprehend what you go through, it can help lower the frustration levels.  This means, this will always be a cross you will bear, finding fellow patients may help you feel not so alone, but when you go back into real world, this is the reality that you face.

5. Process your emotions.
Believe me, a physical disability is more than just an inconvenience.   There's a lot of lasting emotional trauma that will need to be processed for you to be whole again.  The first thing is blame and shame, for fear of not being worthwhile, lovable, inadequacies, and possibly a sense of self blame.  It's not your fault or anyone elses' fault, but for the longest time growing up, I felt it was my fault.  I know logically it doesn't make sense, but perhaps that's just the pain and loss manifesting.

And then there's anger, the anger of "why me", the anger towards a world that doesn't have these problems, and the sadness of loss, of pain and self torment.  Why torment?  Because we are constantly reminded of what we cannot be, what everyone takes for granted and yet we cannot do.  The realization that the world isn't fair, the breaking of the child like innocence. All of it is ours to bear, and you cannot run from it, the best you can do if you can't handle it is to disassociate. Like trauma victims who leave their bodies during a traumatic incident, as a child, the only thing I could do was to forget and numb myself.  Until I was able to mentally process and face these emotions, I kept it hidden and locked away.

And then there's fear, the constant fear of not being good enough, of embrassment because you couldn't see, the fear of rejection.  All of which the average person goes through but is amplified many folds when you are faced with a disability. 

They say what doesn't kill you only makes you stronger.  I agree with that saying but caution about the process.  It's rough and quite painful and often a lonely path.  Only when you learn to process these emotions, you will begin to see the light in things.  Happiness, joy, love, and a whole list of more positive emotions cannot exist if you feel nothing.  The pain teaches us to appreciate the small wins and things we have.  Being grateful help us recognize the things we do have instead of focus on the things we don't.  Everybody in their way doesn't have something, so I try to see it this way where what I don't have is simply somthing less common.

6. Find what you're good at.
Just because you have problems with a disability doesn't mean you have no talent.  There will be things that you'd be good at, learn and explore and find what works for you.  Because I guarantee that you can still excel and do great things despite of this minor setback.

Finding it will help to rebuild your sense of self and confidence.  It takes you outside of your disability and into a world of talent.

What would you do for a cure to Stargardt's?

We're seeing clinical trials happening slowly and hopefully in another 5 to 10 years, we may see gene therapies or stem cell therapies  available for the general market.

In my search for a cure, I'm faced with the question of how much do I want it?

Being in my thirties, my life is consumed by work, family, friends, and self development and maintenance.  Time has become a precious commodity where it's already a struggle to balance life.  In this search, I've come across "therapies" that can slightly improve or help slow down the degradation process of Stargardt's.  However, many of these treatments require extensive investments in time and a committed persistence as a lifestyle.  Perhaps the true reality is that any potential improvements require lifelong commitments and will likely falter when one breaks routine.

For example, Chinese Medicine (depending on their practitioner's skill) can offer remedies or qigong which can help to improve the condition of your eye.  The cost however, can be hours in a consistent manner with sseemingly hopelessness and minimum progress.  The question becomes, is it better to spend hours to try to maintain or simply let it be and accept this condition.

Not knowing how much things can change,  Is it worth investing the time and energy? Perhaps in my younger days, I may be inclined to do so but as time become more and more scarce, I find myself unwilling to invest hours to hopefully better my eyes. 

For those of you that ARE willing to try and searching.  Start with doing some qigong.  It will help flush out some of the toxins that  a stargardt's patient's eyes are unable to process.  The ability to bring more blood and ciruclation will also help keep your eyes in better shape.  Does it mean that it would only work if you invest hours a day, no...  10 min is still 10 minutes in the bank.  But for you to see the effects in a more significant level, the time is required.  So even if you can't do hours, even just 15 min a day will go a long with if it's incorporated into your lifestyle. 

There are times I get frustrated when I see people taking for granted their health.  In my life, I seem to be continuously troubled by health condition where it requires a significant effort just to upkeep (not even to improve.  Life isn't fair and I'm constantly reminded to accept that. 

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.

Latest Updates -- Narcolepsy Sleeping Disorder

So it's been a while since I've updated on my site.   So earlier last year, I found out I have a sleeping disorder called Narcolepsy and an associated condition known as cataplexy.  Narcolepsy is where I get very little REM sleep and as a result is constantly tired and low energy, as well as often having trouble focusing and daytime sleep attacks where I fall asleep just by being idle or bored.

This has always been an issue since my teens and I had simply assumed it to be another part of being legally blind and Stargardt's.  I had thought my inability to focus was a result of unable to see with my central vision.  So early last year, other symptoms became more prominent and after doing some research decided to go to a sleep clinic.  Turns out I have a condition called Narcolepsy and Cateplexy where yes I fall asleep in matter or minutes but the worst part of it is not being able to really go into deep sleep, so I keep sleeping but am constantly tired without end.

I was also told, this condition pretty much will only get worse and that hte only way to controll (not cure) is to take meds.  Variety of stimulants for the REST of MY LIFE!  I opted to search for another option.   Luckily I ended up finding Qigong which is the general form of Taichi.

After doing it for a while, it seem to have improve both my sleep quality and my energy levels.  And even fixed my long term back/neck/shoulder problems from poor posture and tilted head due to looking through peripheral vision.

I started to look into more scientific research and suspect  its related to blood flow and oxygen to the brain.  The brain has the ability to repair itself after damage and with increase blood flow and oxygen to the head, it theoretically has the ability to help regenerate deteriorated cell and induce cell growht. So my tense shoulder and back started to release and the spine ended up releasing which has help me significantly.

So basically it doens't have much to do with Stargardt's except for the fact I've gone through having/living with Stargardt's, dealing with this additional "disease" seems almost easy.  Annoyance perhaps but the emotional baggage is no more for sure.  I guess I've learned to see the up side of things and just keep working on pushing through regardless of whatever comes my way.  Afterall  that's just life.

Understand yourself and how toyou can overcome Stargardts via personality types

Recently I've been reading  about the BCTI personality types as part of a self discovery process.  Going through this process, it made me realize that although trauma comes in many forms, different personalities may deal with it in  differing methods.

Although I'm still trying to understanding  how each personality affects the way we overcome  our own psychological mindset.  (16 types in total)  As an ENFP (extroverted, intuitive, feeling, perceiver)  I have an innate optimistic view that is built within my nature.  In addition, it makes it much easier for me to look at this in a bigger picture sense and by contemplating questions and constant self development, I have the ability to work through coping with life with Stargardts and the associated psychological impacts it had in my life.

N types
All intuitive types have a much stronger ability to rationalize or work through their own logic/feeling and finding balance within their lives.  It would be most likely be a question of when and how but not if they can or not.  It is a part of the intuition characteristic to be able to rationalize and see beyond the present.

S Types,
This is a more grounded type of personality type who focuses on the present.  I've yet to fully explore how this type work through their own identity and doubts that is brought on by considerations such as Stargardt's.   I suspect that this group of people may need outside help and structure in order to help them cope with the damages and disappointments brought on by having Stargardt's.

One things for sure, there are different ways of being at peace with oneself.    Perhaps it might be worthwhile looking at what kind of personality type you or your child are and  think about how you can utilize your best traits  to help you become more comfortable in your own skin.

This is also particularly helpful when trying to understand what may be your strongest characteristic and how you can use that to your advantage and utilize your best traits to help find your place in a sighted world.

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.

PERCEPTION & GRATITUDE
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.

GRATITUDE ISN'T SOMETHING TO BE TOLD
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. 

TELL THE GOOD WITH THE BAD
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.  

TEACH THEM ABOUT CHOICE
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. 

DON'T INSTILL YOUR OWN FEARS
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.

SUPPORT & NEVER APOLOGIZE
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.

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. 

THE DESPERATION
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.

FACING REALITY
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.

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.

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.

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.

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.

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.

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.

Advice on going into an interview.

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?

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.