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.