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.

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.

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.

Struggle between your logic and emotions

Often what people don't realize about having Stargardt's is on any given day, we may look just as normal as the next person. But if it's one thing life has taught us, appearance can be deceiving.

No matter how normal a Stargardt's patient may look, they are faced with challenges everytime they step outside of their regular routine. There are always new difficulties that needs to be overcome even in life's simplest activities. Wherever you go, there is a constant reminder of the inconveniences of not being able to see.

Whehter is catching a bus, buying groceries, travelling, schooling and learning, everything is related to being able to see. If you're a parent or relative of a Stargardt's patient, then remember not to take anything for granted, because no matter how simple an activity may be to you, often the inability to see my prohibit the Stargardt's patient from accomplishing that task.

It's a challenge to overcome the physical inconveniences, but the real demon is often within. The ability to process ignorance and prejudice becomes crucial to those who has any type of disability. Facing constanto challenges, I often felt a sense of helplessness due to my inability in changing my condition. There will always be good and bad days, some days when I am more emotional, I still feel a ense of sadness, but on other days, my logic tells me I am a very lucky person. One thing is for certain, it will take a very long time before these emotions are trully digested. Most people never come to terms with their life.

It's a tiresome struggle, and perhaps one that will never trully go away. And there's nothing anyone else can do to help except to be supportive. As a parent, friend of relative, be supportive and understanding, even if you may not understand. Give them the benefit of the doubt and have faith in their ability to overcome any challenge.

Support them and they will find their way in due time.