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.