Getting By in Life

Today I saw a person who lived her life with passion and hope. It's been a while since I've met one of these kind of people, the kind that lives their lives with their everything. It's been a really long time since I've seen this kind of person around but on the rare occasion I do meet one of them, I'm always reminded of what I've become and turned my back to.

Growing up with Stargardt's, I've perfected the art of getting by. To put enough effort to do above average but never giving my all and holding back in fear of failure. I've lived like this for so long it's become my coping mechanism and excuse. On rare occasions I see a person doing everything they can to live life the the fullest and it just remind me of what I've turned my back on.

I lost the fight in me, and opted to getting by. But at the same time, I'm upset about the person I've become. They say you can do anything if you put your mind to it? But I'm not sure if I can.

Stargardt's isn't something to be fixed!

Few months ago I saw the movie "Love and OtherDrugs". It's about a young woman and her struggle with relationship while facing Parkinson's. Although the nature of Parkinson's is much not related to blindness, but the idea of living and facing a disease is actually very similar.

Although we all hope for a cure someday, reality is there is none at this moment. It's a harsh reality to face for many patient's and often even harder to accept for family members. What I've seen and come to understand is that no matter how much you want your loved one to be better sometimes you just need to accept the disease as part of who they are and not force them to visit doctor after doctor knowing you will get the same answer.

Even when people know there's no cure, they still chase after doctor to doctor. It ends up being something you're trying to do not for the patient but for yourself. You want so desperately for your loved one to be better but ask yourself this question, IS IT SO BAD TO HAVE THIS DISEASE? Chasing after the same answer is tiresome and exhausting both physically and mentally. Yet many people with the disease will not refuse to see another doctor that their loved one has suggested because they don't want to kill their loved one's hope.

The best thing you can ever say to a Stargardt's patient or any terminal disease patient is to let them know you are there to support them and help make their life easier. Love them for who they are, even if it means they have a disease. Because when you chase after false hope, it tells them that they are not good enough because they have this disease.

No one wants to be sick, but when it is a part of you with no cure, it may be time to accept and love yourself even if it means you are sick. Having Stargardt's doesn't mean you can't live life, it just means that life becomes that much harder. But regardless of how hard it gets, find someone who loves you just as you are rather than try to "make you better". Because what they don't understand is you are good enough, you don't need to be better to be loved.

So stop trying to fix something that hasn't found a cure. Maybe one day there will be a cure, but until them accept that this is part of the patient and love them for who they are.

Talking to Others withvision problems

Lately, I've had the opportunity to speak with others who also have severe visual impairment. It's given me a chance to see myself in a different perspective.

I tend to be fairly hard on myself, always expecting more from myself then waht is really needed, especilly when it comes to my attitude towards my disability and how I adapt in everyday society. But recently I've had a chance to meet and speak with some others that are also dealing with low vision or vision loss, and all of a sudden, I'm starting to ease off on myself. I realize, I'm doing pretty good given my situation. I smile, I laugh, I live a fairly unrestricted life, I push myself to do more than what is expected, and I learn to deal and face my demons on a bad day.

How do I feel when I talk to others? Truth is, I don't think I will ever NOT be emotional when talking openly about my vision problems. I can't help but be a little teary when I hear others go through similar struggles. Its nice, to be able to talk openly and realize that although your friends and family may have trouble understanding what i is like to be visually impaired, the person you are talking to can relate and share a similar experience as your struggles. It's real comfort when I hear someone who really understand give words of encouragement. I mean not that support from friends and family isn't important, but for most people, they do not realize the amount of effort needed to deal with the smallest things in life.

I spoke with two visually impaired middle aged individuals and it made me realizeI shouldn't be so hard on myself. I see them and I still see emotional baggage. They still have trouble really face and accept their realities. A lot of time I just smile and say, well life doesn't stop because of you or anyone. If we have to live, then try to make the best of it.

The best advaice...

Forgiveness sharing the love, and a open heart. It is only when you lose something you learn to charish what you do have. Those of us that have Stargardt's, its not a curse. Its a gift of sight, it helps you to see the world for waht it is and not the blnket that covers it. For those that goes through difficult hardships and endure, they learn to love more, appreciate more, and can lead to a more spiritually fulfilling life.

For the parents of any Stargardt's patients out there, "its not your fault"... You can't possibily imagine the kind of hardships they have to endure both physically and mentally. So the best thing you cna do is give them words of encouragement . Let them knowthey can do anything they wnt to and that its always better to try and fail then never to have try at all. Even if you fail, it doesn't mean you're not good enough, it just means its not the right thing for you. Don't overprotect, it will hinder them from reaching their true potential because of fear. Love them just the way they are, let them know they don't need to apologize for their condition. Its not anyone's fault.

What does it mean to have Stargardt's Disesase?

There's no one single answer. Different people may discover they Stargardt's at different stages in their life. For me, I found out when I was 9 while there are other who discovered it even earlier or much later in their lives.

Even though we may all be diagnosed with SStargardt's some people are able to drive and while others can barely see. Some of us lost much of our vision in a few short years while others lose it over a long period of time.

Hence there's no black and white dfinition of having Strgardt's because like all things, there are variations and situational factors.

Regardless of which stage you are at, living with fear is always apart of the reality we face. There's lways going to be a scary thought in the back of the head telling use perhpas we may be blind one day. No doctor can guarentee we won't lose our vision, all they can tell you is in most cases you will only lose central vision and still retain peripheral vision.

For most people, they don't realize the severity of this disease, to them, my ability to walk talk and do noraml things is just.. normal. They don't realize I stare at a menu even though I can't read a word. I nod when they point at something far away and say hey look at t that. Perfect strangers wonder why you stare off to the wall behind them instead of looking straight at them. They ask if I"m talking to them and always has a pzzled and often judgemental look on their face.

I smile, and shrug it off like always. But i guess the worst part about hvaing Stargardt's is more likely than not, your friends and family can't understand you. Not unless they themselves have been through some life altering trauma. So much is taken for granted because we
"look" so normal.

But it doesn't mean you can't have a good adventurous life. It just means everything is that much more harder even just being "normal". There may be things that you can't do, but most things you can. Often the only thing that stops you from it is yourself or people that care for you. They become over protective and deter you from living life to the fullest. Remember that htey mean whell, but also rememter to live your life. Life's not worth living if its lived in fear. Not to say there isn't fear in our lives, but more so not to let this fear stop you from trying.

Maybe being safe is what you want, and tha'ts ok too, just as long as you are happy. Stargardt's taught me to see things beyond the surface, it made me a much more humbler and compassionate human being. It gave me an appreciation for the simplest things in life and the wisdom to not take things for granted.

Sometimes the worst thing a friend of family can do is to tell the person how they should feel. The intentions are always well, but the effects of that statement usually does the exact opposite of good. Trust and support is the best present you can give to any person. A simple belief that they will find their way and unconditional support even if it looks hopeless. And by support I don't men tell them there will be a cure one day, I mean support them and let them know they can still do anything they want. The worst that cn happen is they find out they really can't, but even then at least they tried and for most people that's more important then the end result.

For those who have Stargardt's, no one is punishing you, you deserve happiness just as much as the next person, and renenber that life is often a self fullfilling proficy. So believe in yourself, don't ever let someone tell you you can't.

Advice on going into an interview.

There's no absolute answer but this is what I've done in the past. Normally I don't disclose my condition until the very end of the process. However, I do indicate that I can't look straight to let the interviewer know I'm not avoiding eye contact. I mean this may lose some points with people but if that's the case there's not much that can be done. Ultimately, it comes down to the person seeing your ability or seeing your disability.

When I first graduated and tried to look for a job, I usually do let them know before hiring me so that they ahve a clear understanding of what I can and cannot do. As I've grown in my career, I seldom disclose the extent of my disability during an interview since I often find it irrelevant to my ability in getting the job done. Generally, I try to look for a job that I can use computer to do much of the work which then enables me to enlarge and still work like any seeing persons. However, if it might effect your performance and ability to do your job, I think it's only fir for you to disclose partially so that the employer would be more accomadating to your needs.

Reality is, discrimination will always happen whether its in the open or not. Some people will openly discriminate you and others will simply cross you off the list assuming you are incapable. However, once in while you will meet a person who sees your value, if you're lucky enough to find that boss, do your best and that will take care of the rest.

We can't avoid discrimination and it is a fct we are at a disadvantage o other seeing persons when it comes to general office admin work. Thus its crucial that you find something that sets you apart, it would be something that regardless of visually impaired or not, you would not be replaceable.

In my experience, patience and persistence is key. Some people find a great environment to stay in on their first try, others like me go from job to job looking still. Sometimes it can be depressing but I think if I can find the one right opportunity, all the other bad jobs would just be a bad dreams.

It's not easy, and I don't really think it will ever really be easy. But you'll adapt like all other things in life. Finding the right job is not easy for anyone (seeing or not). So don't sweat it, let things take its course, prepare yourself the best you can in building your skill sets and keep trying until you find someone who can appreciate your talents.

What's your faith?

I strongly believe that faith is a critical element in finding peace with oneself when facing any type of illness or disease. It's the foundation of establishing vlue and acceptance in any patient's mind.

Now is there a best faith that can guarentee inner peace? I don't think so. It could be that I haven't found it myself, but in my opinion, every person has a set of core values which may reasonate closer to one relign more than another. Regardless if you are a Buddhist, Christian, or Muslim, the goal of your faith is help you accept your conditions and find peace and comfort in your heart.

My encounters with relign...
Although I was never Baptized, I've always had to Buddhistm and Christianity in my younger years. It puzzled me when they tell me God loves everyone and yet it still felt like I was being punished with Stargardt's. It made me angry at this "god" who in my mind is punishing me without letting me know or understand what I've done wrong.

In Buddhism, the main idea is about karma. It is a way of thinking where your actions are the seed and your conditions are the consequences of your actions. Because Buddhists believe in reincarnation, your past lives can have an impact on your current life. With this in mind, I often blamed myself fohaving Strgardt's in this life. Perhaps it was a lack of resect and appreciation which led to this life's lost in vision. This kind of thinking in a way, helped me to come to terms and try to ccept and learn hoping I don't make the same arrogant mistake in this life.

But ultimately, faith eventually became internalized whereby I need to rely on myself for my needs and wants. A simple belief can help me get through a bad day, a reinforcement of positive thinking to keep my spirits high. But mostly, if gave me a false sense of control whereby I can be the master of my fate empowering myself to chase dreams or try new things.

No matter which faith you choose to believe in, always remember that you are the key to your own salvation. Any faith is there to help you accept your conditions it can't help you recover from Stargardt's. Faith for me is a way of fighting back those depressing moments.

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.

Accupuncture for Stargardt's?

Since last September, I've been in Asia receiving accunpuncture treatments. Although there has been some setbacks inbetween, I've had close to half a year's worth of weekly treatments.

Why Accupuncture? I have a friend with some eye condition who has indicated this particular doctor specializes in accupuncture for eyes, often helping to stimulate nerves and has had some results in lowering perscription. Although the thought of having needles in my head and around my eyes is difficult to digest, but I figured it might be the only way to help reduce my growing perscription.

The Treament Process. Weekly sessions with each session totalling about 14 needles in both the top of the head and around the eyes. Accupuncture is based on Chinese Medicine's philosophy of stimulating specific spots which is related to a certain body part. The idea is to increase blood flow to that area and allow the body to recover or rejuvanate itself.

My Thoughts. The accupuncture sessions has been trully energy consuming both in body and spirit. The physical pain of having needles in your head is tolerable but still fairly evident. Especially when it comes down to the four needles cloest to your eyes. It feels like the needles were placed deep within the muscles around the eyes and at time s I was afraid if I move my eyes too much it might go into the eye (I think that was more fear than reality) After the needles were inserted, you wait about half hour before taking them out. The physical pain comes from the skin because the skin on your face tends to be more soft and sensitive. In addition, the tiniest movement in your muscles sends sharp pain in the muscle. On days where i have sniffles and allergies, the throbbing pain becomes even more evident. (felt as if i was having trouble getting oxygen to my head) After each session, there is always an unexplanable tiredness that follows, rest and drinking lots of water is recommended.

The mental state of mind was evne more overwhelming than the physical pain of these accupuncture sessions. The hope of improved vision, the sight of other young children being brought by their parents. The unfairness of this world and the desperation of having Stargardt's Disease. Being in that bed is a constant reminder of my condition.

My Results. The only thing I really felt was after each session, my eyes seems to be clearer when looking farther, things seem brighter. But my perscription still remain the same.

I don't relaly know what to think. At this moment I've decided to halt the treatments because I feel it is not worth the pain. Although the real struggle comes when there's is a undying thought that tells you "perhaps you didn't try hard enough or long enough to see a difference" There are some patients there who has received treaments for years, yet I'm not sure what the real results are. But what I've concluded is, if I can't believe that it's going to make a difference, then it would be even harder for the treatments to have real impact.

The pain that accupuncture brings is more than just a physical nature. It brings out hte darkest side of the disease and no matter how much I tell myself, I still feel a mix of anger and sadness.

Maybe one day there might be a cure. But until then I see accupuncture as a way to relieve tension but not as a solution to eye conditions.

A Time to Grieve

When a loved one pass away, it takes time to grieve and mourn. When you lose your eyesight, it also takes time to mourn that loss. To learn to come to terms that what you had is no longer yours and accept the reality of what things have become.

You cannot expect a child to be happy about a loss this big. I for one learned to cover up my grievances so that it does not worry my parents. But it is more stressful to have to hide your true feelings to the ones cloest to you, it makes you even more isolated from the ones you love and a wall is put up around you.

Grieving is a process, for some it takes more time than others. The worst thing you can say to someone when their down is don't be down, because no one wants to be, often it's an emotion that the person cannot control.

As a parent, tell your kids you know they are sad and that it will take time to recover. Let them know you support them even in the darkest of moments, it's not easy to face these dark moments with tem, because it means you have to be able to handle that emotion as wel, but this kind of support will help you build trust and support for your child.

Having a kid with Stargardt's means you need to be more than just a parent, you need to become mentally mature to handle negative energy and emotions. Be a tree for your child because that's the only thing you can ever do. They will need to face it themselves, but the most comforting thought of all is to know they don't have to face it alone.

Often Stargardt's patients look too normal that you forget. But for us we never forget, because we live our world in a state of blurriness. We can only accept this is our world and find ways to get around obstacles, but I assure you, we never forget.

Different ways of overcoming obstacles

Recently, I've come accross an interesting type of psycho analysis called "Enneagram Personality." This types of psycho analysis helps to classify people into 9 different personalities under 3 major groups. Once you determine your specific type of personality, it helps you better understand and analyze how you deal with problems.

Whether it is Stargardt's or any other condition, there's always a process of acceptance and struggles that one has to go through. This type of psycho analysis may help you better understand how you can deal with your problems, and also what kind of obstacles you may have.

This is especially important when it comes to helping you find a better way of interacting with your children. If you are able to understand your own personality and their personality, then you can find a way of deducing their troubles and train of thoughts. It also can assist you to find a better solution for you to support them in their journey of overcoming the mental struggles that is associated with growing up or accepting this disease.

I once said that for me, overcomingStargardt's is like learning to face death, it's not just a physical limitation on the eyes, the physical limitations are only the tip of the iceberg. Stargardt's changes people, sometime for the better, but sometimes it drive people into dark corners of their mind.

I've heard of cases where Stargardt's patients push themselves in trying to prove that they are better, their spend their lives trying to show the world their worth, often, you see much "success" in terms of social accomplishments, but I wonder, when all is done and said, are they really happy with who they are?

There's always different ways of approaching the same problem, different personalities is like changing the formula hence you need a different answer, there's no right or wrong, because it's a learning process.

The Race for a Cure for Stargardt's

Over the past few years, we've been hearing numerous news release regarding the new research and clinical trials being approved by FDA. The two most promising treatments are being headed by two companies, one located in the US and the other in the UK.

The US company (Advanced Cell Technology) is a biotech company that is experimenting with Stem Cell Therapy that has been recently approved by the FDA for clinical trials. The therapy is said to replace damaged RPE cells with healthy cells which are intended to grow into healthy photo receptors.

To learn more about stem cell therapy for Stargardt's patients, view the link below


LVATUG Blog

Accupuncture

Back in September, I came back to Asia in search of a possible treatment -- Accupuncture. They say that there is a possibility for improvement, and that it has helped individual cases in restoring some vision.

I figured there's no harm trying, (besides money and time and pain) So I decided to go to Asia to find this particular accupuncture doctor.

How does it work?
needles are placed at specific points to help stimulate your body to recover by itself. In the case of the eyes, there has been a number of cases where continuous treatments has proven to improve near sighted neess and other eye conditions such as lowering eye pressure.

My Experience
It's been three months of weekly visit. Everytime, the doctor would put 12 needles around my eyes and at various places on my head. You're probably wondering: Does it hurt? Of course it hurts! It feels like the needles help stimulate blood flow and there's a point where it reaches that it almost sting It's not a sharp pain thought, but a very settle pain that you feel.

It seem like everytime I leave after a session, I can feel taht things become slightly clearer. However, this effect does not last, usually by the end of the day, it is gone.

My Result so far
I came back for these accupuncture treatment to see if it can help lower my perscriptiong (did not really hope for much in terms of curing Stargardt's) After three months I went to do a check up to compare my perscriptiong, it turns out that my nearsightedness has gone down while my stigmatism seems to have gone up slightly. It is still inefficient information to really judge if this can have a positive impact on my eyes.

After Thoughts
It's a mixed feeling I go through whenever I'm waiting for the needles. Sometimes, I keep asking myself why do I need to go through this suffering. Why is it I must endure such pain. It's upsetting emotionally not because it hurts, but it remind meof how unfair life can be.

The only advice I cna say is, I'm lucky to have someone by my side to support me through this. Sometimes, support of your loved ones help make these things livable.

Pursue Your Dream

One of the lessons I've had to learn over the past decade was that don't let your eyes stop you from doing what you want to do. A decade ago, I chose not to pursue computers on the basis that I shouldn't stare at a computer all day long. A decade later, my job, although not a programmer, consist of me working on a computer. It's ironic in the sense that because of Stargardt's I decided I should not pursue computers, yet I still can't get away from it.

I've always regreted the fact I didn't study computers as my university major, a decade later, I've finally picked it back up and went back into taking some course to get myself reaquainted with it. It took me 10 years to finally get back to doing what I love. And the surprising thing is, I've never been happier.

So my advice is, don't stop when people say you shouldn't, because in my experience, its alot easier doing what you love then to have to do something that you don't like. With technology these days, nothing will stop youfrom accomplishing our dream.

If you're a parent, encourage your child in doing what they love. Don't let fear get in your way and stop them from doing waht they love.