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.




Friday, December 27, 2013

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

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

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.

Friday, September 6, 2013

Will I be Blind in the Future?

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

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

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.