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.  

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.

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.

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.