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Tuesday, July 30, 2013

It's not what you look at… It's what you see

That was the last line of the episode of Brain Games I recently watched. I immediately made a verbal note in my iPhone to remember it for when I wrote in my blog next. If you have not watched Brain Games yet I highly recommend checking it out!  Its a National Geographic channel mini-series.   It might be my new favorite show!

This particular episode was all about how we see, how our brain perceives what we see, what we miss when we are looking at something else. Of course all of this was explained in terms of normally sighted people. But I found it very interesting. And wouldn't it be cool to have the same type of show but in the perspective of somebody with Stargardt's?  I''ll volunteer!

One test that they did was to flash names of colors on the screen but the letters were in a different color. The challenge was to state the color of the font rather then reading the word. Interestingly enough I was able to do this better than my husband. He found it hard to ignore the word and just focus on the color. I, on the other hand, am used to not being able to read words on the screen so its almost natural for me to ignore the text. .  So even though the letters were large and I could read them, I was able to focus more on the color of the letters..

In another segment they had the dance group the Jabberwocky's perform and the audience was asked to count how many times certain members of the group stepped in and out of the spotlight. Then after the performance was complete the host asked if anybody noticed the penguin walk behind the dancers onstage. I am pretty sure nobody noticed it. Most people were surprised that they wouldn't have noticed the penguin walk across the stage! As you can probably guess, I did not see the penguin either. But it doesn't come to a surprise to me when I miss things. 

Another part of the show which I found very interesting was a test of peripheral  vision I found this section on YouTube and I have included the link below . This showed how few details we catch in our peripheral vision. The narrator said that peripheral vision is too weak to be able to grasp lots of detail.  He compared peripheral vision to the low resolution of  an old cell phone screen. The fovea, a tiny part of the eye is where the high def detailed vision comes from.  A ha! So people like me who virtually only have peripheral vision obviously do not see detail too well! 

There is so much more to this show than what I have touched upon. It's probably silly of me but it's nice to know that even people with 2020 vision don't see everything around them.
So the next time you wave/smile at somebody and they do not wave/smile back, before jumping to the conclusion that they are rude, think about this... perhaps they are visually impaired or perhaps they look like they're looking at you but are focusing on something else. Of course it's entirely possible that they are in fact a jerk.. Ha ha!  :)

This week, I am going to the Schepens Eye Research Institute to participate in a research study. I am actually looking forward to it! I will be sure to share my experience with you all! 

Tuesday, July 23, 2013

Eye Health tips from FFB

I received an email today from the Foundation Fighting Blindness and I thought this was important information to share .  There are 2 videos - one about what foods are good for your eyes, and the other about protecting your eyes from the environment. The FFB site is an excellent resource. They just held their ammual VISIONS Conference, so you can also read about/ watch videos from that. I did not attend the conference but I am thinking of going next year!

The tips for keeping your eyes healthy are worth checking out!

Shame on me for not wearing sunglasses as often as I should!
Here is the link:
Eye Health Tips

Friday, July 19, 2013

Mommy/daughter stuff

It saddens me that I am not very capable of painting my girls' nails. It's such a fun thing to do with your little toddler or preschooler. They get so excited to have pretty nails. But it's not me who gets to do it. Maybe I will give it a try one day and see how it goes.  I guess the neatness factor isn't so important at this young age!   
I am very lucky to have several people who can fill in the gap for me.. My mother, my sister, aunts, cousins,  friends, even my husband would be more than happy to paint their nails :-) And one of these days maybe we can do one of those mommy daughter salon things, 
Anyway, this is kind of a random subject I know, But it just  hit home today. 
I try not to look too far into the future.   I like to take one day at a time, But I can't help thinking about when they get into make up. I'm kind of screwed at that point. I should not be worried about thi s, With a four and a half year old and a two year old. But how can you not think about it a little bit? 

OK, so the above was written last night. I guess it was kind of a "feeling sorry for myself" moment. I am leaving it here because I believe in being genuine and I also think that others can relate to some of the same  issues. I am not one of those "whoa  is me" types of people. But if I'm going to do a blog and be completely honest then I'm going to write about various topics and from various perspectives based on my mood at the time.  I pride myself on staying pretty optimistic. But I guess we all have our moments! I know that my kids will not suffer from having a mom with a visual impairment. Things will just be a little different for them.   

And mom I know you're reading this so let me just say thank you very much for the spa treatment yesterday. We all love our purple fingernails and toenails!   :-) And thank you Jessamyn for the beautiful purple polish !! 

Tuesday, July 16, 2013

Blind Justice?

I have never spent as much time thinking about or talking about my vision as I have since starting this blog.

It's actually kind of strange... but good.  

Besides the obvious benefits of connecting with others, it has also been helpful to me. I have learned that I can help people and how great it feels to do so. I have also learned to be more aware of the challenges I face on a daily basis And ways to face these challenge.  Basically since the blog is always in the back of my mind, I tend to look at things from  the standpoint of "is this something worth writing about?"

People seemed to get a kick out of my last post. - The pros and cons of being legally blind. My mom said that only I could write something like that! I wasn't thinking it was that funny when I wrote it but I'm glad that it was entertaining! 
There was another issue I meant to include in the last post but I couldn't decide if it was a pro or con. To me it's a little of both.
Because of being legally blind I am forever exempt from jury duty. Most people would probably think of this as a positive. But I have always been interested in the law (even thought about attending law school) so Jury duty would actually be kind of cool. But after the situation that occurred several years ago,  I am relieved to be exempt.
 I got selected to be on a jury for a murder trial in Boston, Honestly it's kind of embarrassing because I feel like I should have mentioned my vision before I did. But there was absolutely no question on any form or any opportunity to mention it, (at least that's what I thought.) So after getting selected I was obsessing internally and ended up speaking with the judge and other members of the court.  It was concerning that I could not see witnesses clearly. I was concerned too. I felt like if I did not have all the details, including the demeanor of the witnesses, that I had no right to make a judgment of such magnitude.  So anyway I was removed from the jury. And shortly after that I contacted the government and found out I could be considered exempt. 

This was at least 10 years ago  But it never fails to conjure up strange feelings when I think of it.   Embarrassment, annoyance, maybe even anger because some of those other folks out there with perfect vision don't deserve to be heard more than I do...

I will admit it's nice to not have to worry about jury duty. But on the other hand I think I would make a pretty kick-ass juror because of my sense of fairness. Oh well.  I'll stick to watching Law and Order reruns !! 


Monday, July 8, 2013

The good with the bad

 I hope everyone had a fantastic weekend ! And happy fourth of July to the U.S. readers !
I decided to share my list of pros and cons of living with low vision. I would love to hear any others you might have!

OK here we go:

Pro – Often when we are driving down the highway I will notice my husband wince or make some kind of displeased face. or sound. That's when I am grateful that I can't see the road kill!
Along the same lines, I am spared some of  the gore o TV shows and movies. 

Con –When the kids ask me what something is and I can't see it.

Pro – You learn at an early age not to judge people or treat them differently due to their disabilities

Con – sometimes you learned this the hard way

Pro – You develop keen hearing and listening skills.  
You also tend to have a good memory because you memorize things instead of needing to look them up time and time again. Case in point:  I am the family go to person when it comes to relatives birthdays. For some reason I know them all. I also remember phone numbers of friends I had in elementary school who I haven't talked to in years! 

Con – I am sure you can imagine the arguments that occur when I insist that I heard or remember something better than somebody else! Ha ha! 

Pro- You learn that there is so much more to a person than outside appearance. 

Con – Sometimes you might not realize just how crappy you look when you go out:)

Pro – Schools and businesses are required to provide special accommodations.

Con – Sometimes you just don't feel like being singled out.

Pro- You learn creative ways to accomplish tasks or to get a good look at something.  For instance, I take a lot of pictures and videos of my kids(using my ipad and iphone.).   Then I zoom in on them so I can see details. 

Con – This takes up a lot of memory space!  And keeping u with technology is expensive! 

I am sure there are lots more. But for the moment I will stop here. Gotta check on the kids.. They are way too quiet! 

Tuesday, July 2, 2013

Star Wars to Stargardts.

 On my first date with my husband,  I actually pulled out a magnifier to read the menu at the Cheesecake Factory. I don't think he even batted an eyelash.  The first time we went away together he took a sharpie and wrote a big S on the hotel shampoo bottle and a C for the conditioner.  This was without me asking. The first time we watched one of the Star Wars movies (or maybe the second...he will know and will be sure to tell me which movie it was!  Maybe Attack of the Clones?), we  set in a recliner which we place a few feet away from the TV.  
We met on I found his profile and saw a good-looking guy from Cape Cod(where I vacationed as a child) .  And the fact that he worked in ophthalmology was an added bonus!  He is one of the only people I have ever met who has heard of Stargardts.. He can actually explain the scientific symptoms of the disease better than I can. 
Crazily enough, When we met,  he was actually working with the doctor who diagnosed me at age 9! 

We hit it off right from the start. We shared a love of music, movies, the ocean, skiing, and cribbage.  We got married in the fall of 2007 on beautiful Buzzards Bay. 

Basically Chip is immersed in the life of low vision . He sees patients all day and then comes home to his legally blind wife! He says that I help him on a daily basis..  That he has a better understanding of what patients are going through because he lives it with me. And he can recommend certain tools  that work well for me. 

He is obviously  the only driver in the family, which is challenging and requires careful coordination of schedules.  Thankfully he enjoys driving.  Especially in his Honda Ridgeline 
And good thing he hardly drinks because I can't be his designated driver!  He does in fact benefit in some ways from having a wife with low vision.  We just NEED a 60 inch Tv...And he always has control of the remote!  Not too shabby. :)

But seriously I am very grateful to have him as my husband And the father of our two beautiful girls. 

Before Alexis was born, we saw a genetic counselor who could not tell us anything we didn't already know.  But we had never even considered not having kids because of any possibility of them inheriting Stargardts.  Genetic testing would cost thousands of dollars.  We will both be on watch for any signs, but so far the kids seem fine.  In fact, they can spot ants from a mile away!

Chip is an absolutely amazing dad. husband, friend, confidante, and supporter.  

Now let's see if he really reads my blog.. Ha ha ha! 

:) I love you hun!