Tuesday, September 30, 2008

Five Stages of Grief

Many parents say their child with Stargardt's is often angry and acting out. Perhpas this will be able to shed some light on what the child is going through.

The best example I can give to those that do not have Stargardt's is the comparison with death and illness. Ususally when a person faces dying, they go through the five stages of grief.

Denial -- Anger -- Bargain -- Depression -- Acceptance

A patient with late stage cancer may go through such emotions. Now imagine your child having to go through it. Ultimately, its the acceptance of not being able to change or control their own life.

1. Denial

When a child first diagnosed with Stargardt's, its hard to accept and understand what it fully means. Parents and patients' alike often think because the patient can still see that thisis just a misunderstanding, that their child or themselves is nosuffering from this unheard of disease.

2. Anger

Once the child begin losing his/her vision, they often lash out with their temper due to frustrations towards their environment. When I went through this stage, I hated the world, I hated people because they did not have my problem, I hated my parents for bringing me into this world with Stargardt's. I even hated myself for being who I am. I hated the kids always laughing and making fun of things I have to do to see. I nsome ways I even hated relign, I went through a phase of hating any so-called higher beings because maybe these beings were the one that took away my sight. I hated because I coulnd't understand why I was being "punished". For me, I hated everything and everyone because they all remind me of what I am not.

I believe with most people, anger is a very long stage to go through. Imagine growing up with this anger, feeling powerless to change, hating the fact that you're so different from the other kids. That's only scratching the surfacing on the resentment that will build up. In addition to hatred, I went through a brief period of suicial phase, for me, family was what pulled me through the hard times. It wasn't so much that they knew what was happenning with me, but more so I couldn't bear the thought of them standing at my funeral all because I was too selfish to try to live this life.

3. Bargain
Eventually, you reach a point of realizing being angry won't change anything. Then in some way or another, you try to bargain. Maybe its a secret wish that if somehow I can get my sight back I would do something. Although, by now, regardless of what age you are at, you're probably too cynical to trully believe that thereis a bargain you can make to just "be normal".

4. Depression
The feeling of total hopelessness overpowers you. Struggling with the fact there is NOTHING left to do, too tired to hate, bargain, or be anything else. They will struggle. I was faced with this when I was in 2nd year university. I felt the world just had no meaning. I was tired of always having to struggle. I didn't hate anyone anymore, I just wanted rest. Perhaps to disappear, don't get me wrong, it wasn't suicidal, it was just a time of almsot giving up. Its the feeling of helplessness that takes over your life, I still lived but in a way I felt like a shell, being hollow and feeling like a living zombie. Often I look at the world, I get the feeling I'm looking through a glass window, that I'm not really part of it. Even to this day, I still feel that way from time to time.

5. Acceptance
I've always been a person that is very private about my feelings and thoughts. But that's no life at all, I had many friends, family that care a great deal about me. But alot of times I feel like a burden to them, so I learned at a very young age to keep my feelings to myself and put on a smile. For most of my life, I lived behind a really thick wall, I lock all feelings inside so I don't have to deal with them, and if somehow someone digs in, I can feel almost like whatever is inside is bleeding.

This was the case until I met a friend. Maybe it was the right timing, maybe it was time to let go, I can't really say what triggered it exactly, I decided to let all guards down when dealing with this friend. No more trying to pretend everythign is ok, no more trying to smile when I am sad, just try to be myself. Believe me it was probably one of the scariest thigns in the world. In all my 20 years I had never really let my guard down to anyone until then. For me it was the turning point.

Maybe it was his tolerance and compassion that let me know it's ok to be who I am, that I don't need to be strong all the time. It was through him that I learned to accept, to embrace, and to love. He was not my lover, but in some ways he helped me learn to love by accepting who I am. Up until that time, I've always kept distance with people and friends. I understood people, knew many things about them, but in some ways, I didn't let out much about myself. Perhaps I learnedd to forgive myself and finally accept who I was. It wasn't an easy thing to do, I had to force myself to break out of the habit of putting up a wall. But like anything else, this is something that people need to want to do themselves before anyone else can help, it's like what they say, "if you don't help yourself, no one can help you!"

Life after acceptance. Nowadays, I spend much of my time trying to help others, and finally I am happy not because I'm putting up a smile for others, but appreciative of my life and what I have.

Growing up with Stargardt's -- How many fingers

One of the most tiresome things for me was being asked the question "how many fingers am I holding up" and they would wave and sort of laugh. I know people or kids don't mean harm by it, but if you were asked that question by almost everyone you've ever met, you'd understand what I'm talking about. I understand its hard for people to comprehend what it means to be legally blind, because I "look" normal.

Growing up with Stargardt's -- Intro

I once read somewhere that people who were strucken by Stargardt's at a younger age have a better chance of living a "normal" productive and healthy life than those that were affected after they have reached their 20's.

I think it is true, mainly because you grow up not knowing what is "normal". As a kid growing up with Stargardt's, you are just different. But as a young adult who just foudn out the've got this rare disease, it may be too overwhelming to deal with. Perhaps like all things in life, time can help you adjust, but in many cases, people are not willing to let go of their past and face the reality, as a result they give up on their living a healthy productive life.

But believe me when I say, growing up with Stargardt's is no easy thing. Many parents when they first find out their child has Stargardt's, worry about how their child is going to go through school. In reality, school should be the least of your concern. I know, I was lucky enough to grow up in Canada where there are numerous support for visually impaired persons. There are government programs to help subsidize the equipment you may need, talking books and braile libraries, enlarged textbooks to borrow, and counselling and support for getting through it all. Regardless of where you live, even if it's a place that does not have all the support that Canada offers, I can still say almost for certain, school is not the main problem for your child growing up.

Well if School's not the main issue than what is?
Kids, that will be your #1 concern. Remeber back when you were a kid, there are always the "in" group and the "out" group, there is always a school yard bully, well all of that combined with a kid's inability to tolerate and be compassionate / understanding of differences WILL be everything your child needs to go through. And the best part is, there is probably NOTHING you can do about it.

Kids, because they are so innocent, they can be very cruel. Most kids do not understand what it means to treat others as they would like to be treated. To them, they don't see how they can hurt others, they just find thigns to be entertaining or fun to make fun of differences. Whether it's race, gender, or in this case disability, kids are intolerant of differences.

Of course not all kids are like that. There are still rare angels that would go out of their way to help others in need. They are willing to take a moment to delay their work just so they can help you get started.

All in all, its going to be a rough road for your child to grow up, to see the true nature of human beings and face the harsh realities of the world at such a young age. As for you parents out their, its not going to be easy either, to watch your kid upset and frustrated but there is nothing you can do. To accept that there are somethings that we cannot change nor make it better.

Thursday, September 25, 2008

My first diagonosis

Its hard to recall what it was like to be able to see normally now. i remember when I was in grade 1, our school had periodic eye examinations to let the parents know if their child required glasses. Back then, even though I did not have 20/20 vision, I was able to manage to see about 20/25 (approximately the 8th line) but because I did not have 20/20 vision, the school would send home a memo notifying my parents that I may need glasses.

My mom also said, as a child, when I watched tv I would tilt my head down to watch tv. She didn't think much about it, but later realizes it may be because my weaker central vision. I know for a fact that afer Stargardt's had tkaen its toll on my vision, I NEED to use peripheral vision to see clearer and hence my head is always tilted upwards or downwards slightly to help me see better.

Initially, when glasses didn't help restoremy vision to 20/20, my parents thought I had "Lazy Eye" and I ended up going to a correctioanl clinic to rehabilitate my eyes. (Noboday knew better, and lack of knowledge in ophthalmology led to this "incorrect" diagonosis. By this time around Grade 2, my eyesight began deteriorirating. I went down to around 20/30 (around the 5th line). But we still couldn't find out what the problem was, and the Lazy Eye treatments did not have an effect.

However, soon after I went into the clinic, I had moved to Canada. At which time, I began going to the Sick Children's Hospital to have further examinations. Even when I first moved to Canada, I still remember wearing the eye patch for the correction of Lazy Eye.

After my first visit to the specialists in Sick Children's Hospital, they began running bunch of different tests. Eventually, they concluded that it was Stargardt's and there was no cure. They told me it was heriditary and wanted to check my parents to search for hte gene, but at the end, they coudln't fidn anything and concluded it may have been a skipped generation gene that was passeddown to me. By this time I was almost 16, and had pretty much deteriorated down to 20/150 (second/third line)

All I knew was, I was beginning to see less, I had some sort of genetic mutation called Stargardt's, it only happens 1 in every 20,000 people. I hated the world for it~

Tuesday, September 23, 2008

Who am I? Why am I writing this Blog?

I'm 25 this year. It's been 15 years since all of this started. I'm writing this blog hoping it can let others out there have a glimps of what their life will be, or what their loved ones are going through. Its not easy living with Stargardt's but then again there are alot worse things in life.

For those of you that have no idea what Stargardt's Disease is, its a Age-Related Macular Degeneraton. It usually occus in children or young adults. It is a heriditary gene mutation taht is pass on by both parents. The parents may be carriers but not suffer from this disease. It is estimated about 1 in 20,000 people have Stargardt's disease. If you want to learn more about Stargardt's Disease I will put up more links that help describe the disease in futther details.

Why write this blog?

Since I am a Stargardt's patient, I've always kept an eye out on latest news and research or possible treatments. Although skeptical, it never hurts to keep up to date. I've noticed that there are many people asking about stargardt's or parents that just found out their child has stargardt's.

I figured, why not help these people, share some of my experiences, thoughts, and maybe, just maybe, it can make their lives a little easier.