Wednesday, August 4, 2010

After a year of soul searching

It's been almost a year since my last post. Work has taken up much of my life and I've been doing some soul searchingover this past year.

It's almost 20 years since I was first diagnosed with Stargardts's. It's been quite the journey learning to cope and live with such a handicap. Overcoming physical and mental challenges and learning to live life from day to day. Its never easy but it is still bearable.

During the past year, I've been exploring matters of the mind, looking for a way to come to terms with this disability. Not that I haven't been looking in the past, but more so turning to new thoughts. Figuring out what I want, and searching for happiness.

Normality is a luxury that comes with a price.

As a person with a disability, there's nothing I wouldn't want more to just be normal. To drive a car, to read a map, to see the faces for passers by, to read a menu at a restaurant, to read a book on the train, all o which comes at a great price to a person like me. Somethings, with aids, you are able to overcome, but overcoming is still far from being normal. What you do not realize is how much effort it takes to simply be normal.

Happiness i all around you, simply need to take pleasure in life's small moments.

There will always be great people doing great things regardless of their circumstances or handicaps. But for the rest of us average folks, looking for happiness in small things will make your life a lot more livable. Being blind doesn't mean you cannot enjoy life, it simply means you will need to learn to enjoy it in a different way than most. Taking pride in little moments and tasks and stop trying to compare to everyone else. It may sound silly, but take pride in life's simple tasks; cooking, singing, running, because there are always someone who wish they can be you.

Take nothing for granted.

Whether its a helping hand from a stranger, the unconditional love of a parent, or anthing else in life, we are lucky to have the support and love from all those that touch us. Make no mistake, we are blessedby these peopleand always remember to keep it close to heart.

Understand and embrace life, only then will you find true happness and salvation.


  1. beautiful job! My daughter is 14 and has stargardts and I will share this with her.

  2. Jen,

    Great post and it is great to see you back in the blogosphere. I have had Stargardt's for 35 years and I am going strong. Your post resonates with me.

  3. Great post Jen, everybody should embrace life and do everything they can to be happy.
    I have a girl-friend that have Stargardt and she is doing almost everything to have a normal life, as much as she can.
    She is the kindest person I ever known.

  4. I was diagnosed at age 30, accidentally actually. Looking at someones amsler grid. I remarked that the lines were wavy. And as they say the rest is history. I am now 58. My vision loss in now excellerating. Most of the vision in my right eye is gone. Left eye is a little better. Color vision is interesting, buying presents of clothes or for myself is pretty funny if i do say so. Everything Jen said hit a cord. Most days i manage to put it out of my mind, but i have to admit i'm scared. No one in my family seems to get it about vision loss looming in their future. i know they think they truly do, but....On another thread, has anyone used exective bifocals? i can't use regular because of blnd spots. Interestingly enough i work in a book store. So rading is a big part of my life. I just wondered if they would work. I hope i didn't seem too ramblly, it is however, nice to read and write to people who have been where i am and going in the same direction as myself


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