Saturday, February 25, 2017

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.

Tuesday, February 21, 2017

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. 




Saturday, April 16, 2016

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.

Thursday, September 11, 2014

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.







Tuesday, August 26, 2014

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.