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Monday, December 30, 2013

Ready for a new year

To anyone who has attempted to post on my blog and has had difficulty..., I apologize. 
 I have  fixed this setting so there should no longer be an issue.
Only took me 7 months!


I also want to thank everyone who has read my blog and been so supportive of me! 


When I decided to start a blog, I was unsure of what to expect.  My goal was to reach out to others who deal with visual impairments, share my experiences and offer support to others.  Before I had started the blog, I remember reading someone else's article and relating to several things he wrote about (e.g. how he crossed the street in the city by waiting for others to approach the crosswalk and walking when they did) and I remember finding comfort in reading this because it was the same thing I would do. 


So I started writing and within a week or so I heard from a woman who had recently been diagnosed with Stargardts and felt alone and scared.  W e quickly became friends and I consider her a very special person in my life. She recently sent me a beautiful bracelet accompanied by an incredibly thoughtful note...Both of which I will cherish always.
Being able to help her in her time of need was such a wonderful feeling.  Of course I wish she didn't have to go through it,  but I am so glad that I was there to help her.


I have heard from others who have been diagnosed or who have loved ones dealing with visual impairment.  Friends and family members have also told me that they have learned from reading my blog. 


Writing about my life has been helpful to me as well.  I do not talk a whole lot about some of the things I have written, so in a way it has been therapeutic.    And I am sure it will continue to be!


Thus, I consider the blog an accomplishment of mine in 2013Q 

That and keeping my children safe and happy!


However...
I don't know about you but I am happy to see 2013 come to an end!
It has been a roller coaster ride with seemingly more lows than highs for many people I know.  Death, illness, financial struggles and much more.  I know its all part of life but that fact doesn't make it easier when you are in the midst of it.


I sincerely hope that 2014 brings joy and happiness to all of us.


Just came across this quote I  thought I would share:
"Begin today. Declare out loud to the universe that you are wiling to let go of struggle and eager to learn through joy."
Sarah Ban Breathnach



Happy New Year everyone!


And Happy 5th Birthday o my sweet precious daughter Alexis!  You mean the world to me!
(Or as she says:  "I love you more than as far as  the last star in outer space!"













Friday, December 6, 2013

Focus

It is funny how some things stick with you for a long time.  Maybe it was something someone said that you can't forget even if you tried.  Or the way someone or something made you feel.  We have all had these moments.  


Well, about 8-9  years ago I took some yoga classes at a place in Cambridge that will remain nameless (its not one of the big or popular studios.)

I was working at MGH at the time and a friend from work  invited me to check the place out.  She loved it and had even started a part time job there.  I signed up for classes, paid several hundred dollars, even began helping to set up the studio before class.  It was very different than any other yoga class I have attended.  It involved  a lot of talking and discussing feelings, as well as learning poses.  I enjoyed going there for a while although I never got as into it as my friend had. 

The yoga master was an interesting woman.  She had apparently done all sorts of studying with yogis.  She was really kind of a life coach.  She offered massage sessions which were meant to release the negative energy and make you a new person.  I had one of those sessions once which cost about $100.
Looking back I wonder what I was thinking going to this place.

Anyway, the instructor knew about my vision.  I had told her about it.  If I am in a class with only a few people and there is lots of personal attention, I feel the need to tell the person in charge.  If I go to a class with lots of other people who just follow the instructor's moves and direction, I do not necessarily bring up the subject.

This woman was all about being present in the moment and avoiding chaos in your life, being true to yourself and others, etc.  Great concepts but an odd way of delivering her message.  She wanted things a certain way and demanded a certain level of respect.  Almost to the point of instilling fear in people.

One day during class she asked me a question and while I was answering it she said I needed to focus my eyes on her.  That I was not focused.  I reminded her that my eyes wander especially when they are tired after a day at work.  I honestly forget what she said next but I am pretty sure she just reiterated that I was not looking at her and focusing.  I left after that class and never went back.
I was pissed. 
This woman who acted like she understood people and could help you through any life crisis had just insulted me and disrespected me.  At least that's how it felt.

Before starting to write this post, I searched online for her studio.  All I could find was a white pages listing.  No websites, articles or yelp reviews.  While I do not wish anything bad on this woman, part of me hopes her studio has closed.

Fast forward to present time.  Recently I completed the 10 week Focus T25 workout program.   It is by Shaun T who also created Insanity.  In September I gave myself the kick I needed to get into shape.  I saw pictures of old friends who looked amazing and I realized there was no good reason why I can't do the same thing.   I looked at pictures of myself and was not happy with how I looked.  So I ordered T25.  I started the day after it  arrived and did not miss one day for the 10 weeks!  (Monday through Friday) The program has an Alpha phase which is the first five weeks and then the Beta phase.  There is a Gamma but I have not ordered that yet. 

I am now repeating the Beta phase.  The 25-minute workouts are intense but they are only 25 minutes! I have managed to drop about 10 pounds and tone up more than I have in years.  I am proud of myself for sticking with this and pushing myself to FOCUS!  I do the workouts in my living room using our 60-inch TV.  The kids are usually playing around me and sometimes they join in. That is always fun. :)  Obviously it is great to be able to do this at home rather than worry about getting to the gym.  And I can look as close to the huge TV as I need to without feeling self-conscious.  (Which, sadly is how I feel sometimes.)

I actually enjoy the workouts and I especially enjoy seeing the results!  It takes a lot of dedication to make yourself do it but the Facebook groups I belong to definitely help keep me  accountable.

I may not always seem visually focused but my mental focus is clear...at least as far as fitness goes!...for a whole 25 minutes a day! 


Friday, November 22, 2013

iConsult Part 2

I was excited to get this email today! She had trouble posting on the blog (as many other people have. unfortunately.)  
.

I'm S, D's daughter. As Heather wrote, my mother had an eye exam with Chip, Heather's husband. When my mother and sister, who had accompanied my mother to the exam, asked Chip a bunch of questions about assistive technology, Chip told them what his wife used, and casually mentioned that his wife should really open a business consulting on these matters. 
 
So, we followed up on that suggestion.  We tracked Heather down and asked if she would meet with us.  Not only did she meet with us, but she did some investigating and preparation ahead of time! Heather showed us how to use the iPad in the specific ways that would be of help to my mother, and including ways to make it more accessible. 
 
At first my mother was quite dubious that she would be able to navigate around the iPad (she is in her 80s and not totally comfortable with all this new technology). She told Heather that this was not for her.  Really what my mother wants is to be able to hold a newspaper in her hands and be able to read it again! Alas, that is not to be.  But Heather was not to be deterred! She was patient and persistent and encouraging.  My mother started to get the hang of it.  It's not perfect --after all it's not a hold-in-your-hands newspaper.  But by the time we ended with Heather, my mother had decided to get an iPad.  So we did.  And she's getting better with it and she's able to read her favorite columnists.
 
So, thank you Heather!  I wholeheartedly recommend Heather as someone who is eminently knowledgeable about assistive technology for the visually impaired and wonderfully personable -- and who could resist those beautiful daughters!

Friday, November 15, 2013

iConsult

As you may know, my husband is an ophthalmic technician so he meets people every day who are dealing with visual issues.  A few weeks ago he met with an 88 year old woman and her daughter. 

She (I will call her D) had just been diagnosed with Macular Degeneration.  My husband being the friendly, caring and supportive guy that he is told them about me and how I should go into business consulting for people with low vision (an idea he and my mom have been kicking around for years!)
He told them about my blog and shortly after that I was contacted by D's other daughter (let's call her S.) She explained that her mother was interested in reading the New York Times and Boston Globe on a tablet.  We set up a time to meet and that day was today.

What a great visit it was!  A few days ago in preparation, I had downloaded the NY Times and Boston Globe apps onto my iPad.  I was able to show them  how it looks and how to zoom in and navigate through to different sections.   She was mainly interested in a particular column in the opinion section, and the comics pages. :)  I also showed them how to have the iPad speak your selected text.  This woman is hard of hearing as well as losing her sight but she liked the idea of having it read aloud as she followed along reading. 

I explained that it might take a while to get used to the touch screen commands but it was evident from how she responded while testing it out, that she will get the hang of it.
I know people 25 years her junior who are scared of technology.  She is not.  
She reminds me of my late Gramma Connie who, at 91 years old would send emails with animation, e-cards, and would IM with her daughters across the country.  One time, Chip and I were visiting her and she was very upset because her computer had crashed and she was without it for about 2 days.  Thanks to my Dad, uncle and aunts a replacement was soon attained and she was happy again!

During today's visit, D decided she wanted to go to the Apple Store and buy an iPad...Today! 

I have to say that it feels pretty awesome to help someone out like this. 
She obviously really enjoys reading her newspapers and has been struggling with it due to her vision.  If that is something you do each and every day, you should not have to give it up if it can be rectified through technology.  I loved her attitude and her eagerness to get started with her own iPad.

She and her daughter were very appreciative of me and we talked about being in touch and possibly meeting up again.

I am appreciative of them as well.  First of all, I respect S for coming out from California and taking the time to understand her mother's needs and help her as best she can.  And as for D...what a great lady!  As I said, she reminded me of my grandmother and that was cool because it is always heart warming to think about Gramma Connie.  Even some of the things she said could have come right out of Connie's mouth.  For instance, when I explained the reason for the title of my blog "Are you looking at me?" she told me that when people ask me that question I should respond by saying "No...You are too ugly to look at!"  I LOVED THAT!

Oh, and when they first arrived at my house and Chip was taking the kids out for a while, Ayla (who is 2 1/2 years old)  insisted on giving each woman a high five!

It helped me to see that I can really make a difference.  And that my demonstration of the iPad was good enough to get her to want one for herself!  It is nice to sit down with people who are seeking advice and know I can help them just by showing them how I do things.  I am not trying to conjure up information I learned from school or books.  I am simply being me. 

Maybe this consulting business isn't such a far fetched idea!




Friday, November 1, 2013

Life

Its 1:30am...What am I doing awake?  This is not the best way to go about writing a blog...Go for weeks without writing.  Then stay up late one night because you can't stop thinking and then decide to write!  Oh well.  I m used to being tired!

Anyway, many of you know that I walked in the Boston Vision Walk for the Foundation Fighting Blindness last Saturday.  It was a great event!  And with the help of friends and family I was able to raise about $1900! A huge thank you to everyone who supported me and my team.  I have been seriously overwhelmed by the generosity.  And it feels good to be able to contribute to the fight for a cure.

Our team, G Force, consisted of me and Chip, our two daughters, my sister, and  mom and dad.  The kids rode in their double stroller and for the most part were well behaved.  Not counting some major whining from our 2 year old.  The weather was perfect and the scenery along the Charles River was beautiful. 

When I do events like this, I see just how lucky I am to have the sight that I do have.  Many of the other walkers walked with canes, guide dogs, or a person on their arm.  I also realize how awesome and supportive my family is.  My parents were happy to be part of this and made the day extra special.  The kids got to play on a cool playground and then we all went out for a nice lunch.  It was a fun day.  A positive experience all around.

Oh,  and the Boston Red Sox won the World Series a few days ago.  That was pretty awesome! 


As I hope I have shown, I try to stay positive about life.   But lately things that have happened to people I know  have been making my heart ache.  I think that is one of the reasons I have not written in a while.  That and my addiction to Candy Crush.

But seriously, what is going on lately?  I am not going to mention names but I have friends, former co-workers, and family members who have lost loved ones (parents, spouses siblings, even young children) tragically, suddenly, or from illness.  I have a  friend whose child is fighting Leukemia.   It is not fair that people should have to go through such tragic events. 

When awful things happen to people around you, it really makes you think about what would happen if it were you going through this?  You certainly can't look at it like its something that happens to other people.  But inevitably it makes you cherish what you have a bit more.  To make sure we make the most of every single day because we never know what will happen tomorrow.  To say I love you to your family over and over again.

My mom told me that the nuns at Catholic School would say something to the effect of "You better kiss your mom goodbye every morning because you might not see her again"  A bit  guilt trip-ish but actually quite true.  

If my family stays healthy and is spared from tragedy, I really do not care if my vision sucks.  Its nothing in the scheme of things. 

For my friends who are going through hard times, please know that you are in my thoughts.

I will post again soon but now its time for bed!  Good Night all.


Friday, September 13, 2013

Behind the Wheel

My 4 year old told me she wished I could drive the other day.  Luckily she was sitting behind me in her car seat so she did not see the tears spring to my eyes.  My response was just "Me too honey."
But the funny thing is that the reason she said it at the time had nothing to do with the inconvenience of finding rides everywhere and that sort of thing.  It was because we were waiting in the parking lot of a grocery store while my husband ran in to get a few things and she was BORED.  She wanted to ride around the parking lot instead of just sitting in one spot!  Apparently the seven minutes we had to wait was torture!

Tonight she said something about driving and when I reminded her that I cannot drive she said "Yes you can!  You can drive my jeep!" Which is true.  I have hopped on her jeep and driven it on the driveway although I am sure I exceed the weight limit.
After that she said that I should wear glasses.  I told her they do not work for me and she asked me if I could see around the room we were in.  I said yes and of course that made her wonder why my eyes are not good enough to drive.

She is an extremely bright kid and I can tell she is trying to make sense of my vision.  Which is not easy to do even for adults! 

She and my 2 year old now each have their own battery operated vehicles that they ride around in.  Thanks to some wonderful family friends who gave us their old Jeep!  Alexis knows how to make a three point turn thanks to my husband.  It is amazing!  She loves to drive up our long driveway to get the mail and drive back down the hill.  Of course I walk along with her when she does this!  Ayla likes to ride with her big sister and take control of the radio.  I do not want to think this far ahead but I can't help picturing them as teens doing this!   I hope they stay as close as they are now. 

I know I am a good mom.  We took Ayla for a check up the other day and she blew everyone away with her vocabulary, her demeanor, her politeness and the fact that she did not cry when getting a shot or blood drawn (CRAZY!) 

So I know that I am doing my best and that they are learning and developing right on track or better.  But I can't help feel like my not being able to drive is hindering them now and will so more and more as they get older.

I am very lucky to have my family so close and I am eternally grateful for all of their help. 

I feel like I have been getting better about pushing these fears to the side while I enjoy every minute with these cuties!  But when these questions come up, or in certain situations, I can't help but feel some sadness.

Anyway...
Now check out these cuties cruising around in their pink cars!

 

 






Tuesday, September 3, 2013

Walk, Give, or Shop for Sight!

Hi everyone!

I will be walking in the Boston Vision Walk on October 26th. My team, G force so far consists of me, Chip and my parents- Mary Jane and Bob. I invite you to join us but only if your last name starts with G.  (Just kidding!)
If you wish to register or donate, please use this link:

If you would like more information about the Foundation Fighting Blindness and how your donation will be used, please visit:
Foundation Fighting Blindness

I have also set up an online fundraiser through Thirty-One Gifts! I am an independent consultant for this awesome company. All of my commission (25% of sales) will go to the Foundation Fighting Blindness.  If you are not familiar with 31, take a look!  They have so many amazing products to help you organize your life in style! They also have a fabulous special for the month of September!
Boston Vision Walk Fundraiser via Thirty-One Gifts


Please contact me with any questions.
And thank you for any support you can offer!  It means the world to me!

Love,
Heather

 

Wednesday, August 21, 2013

Back to School

Hi everyone! Its been a while since my last post!   Been a busy summer!  Its hard to believe school is starting up again soon.  And in some areas of the world it already has!  That is what prompted me to write this post.  But before I get into that, I would like to give a brief rundown of the research study in which I participated earlier in August.  It was conducted by a second year student at a local school of Optometry.  She was great.  very personable and professional.  It is ironic because the study was evaluating how people with visual impairments can see other people's faces.  I had spoken with a friend of mine who had participated in this study and he had warned me that I might not be able to do it.  He was right.

I was asked to sit a meter away from a computer screen which depicted a virtual head.  My task was to move the man's eyes (using a mouse) so they were looking at me.  Or to move the eyes away from me in a certain direction.  I could not even see the eyes so I was completely guessing.  I was given the choice to skip it, but I figured since I was there, I would try it.  The student knew I was completely guessing but said I was actually not doing bad.
They tested my vision while I was there and it seems to have stayed stable at 20/300 since the last time I was there a few years ago.

So there was not a whole lot to tell about that.  But I am glad I did it and if they ask me to be part of another study, I will gladly agree.  If I can somehow help researchers in this field, even if it is not directly related to me or Stargardts Disease, I will.  Every bit of information is useful somehow.

OK.. Back to my current reason for writing.
With the school year approaching, it occurs to me that I might have some perspective to share as a former student and daughter to the world's best mom and advocate for her children.

Seriously the fact that I have not gushed about my mom on this blog yet is basically a sin.  She is unbelievable.   She is my number one fan and supporter, and has been throughout my life.
She is, by far, the most compassionate person I know.

When I was in school, she made it a point to meet every teacher I had and talk to them about my vision.  She would call meetings with my teachers to make sure they were all clear on what types of accommodations I needed.  She had a say in which teachers I would have each year.

When I think of it now, I can imagine how hard, frustrating, and emotional those days must have been. 

Every parent has to learn how to  balance protecting their child with letting them be independent and handle things on their own.  For parents of kids with disabilities, this becomes way more complicated.  I am sure my mom put herself in my shoes and thought about what it would be like for me in any given situation.  And if she could help she would.  But obviously,  she couldn't be there all the time and I bet she had millions of fears.
- Will she be able to find her way to class? 
- Will she get upset and embarrassed when she can't see something?
- Will someone say something rude and upset her?
- Will the teacher remember to enlarge her papers?
etc. etc.

Well, I got through school and oddly enough I actually enjoyed it.
I do remember some of the things that would cause me the most stress were:

- The first day...When I had to meet new teachers and tell them about my vision.  and explain that Yes that's right...even in the front row, I cannot see the board.
-  Finding my friends in the cafeteria at lunch time if I walked there alone
-  Praying that I would not be called on to read aloud in class.
- Getting on the right bus
- Listening to all of the other kids talk about getting their drivers licenses.
- Being able to find my mom's car if she was picking me up.

 Most, if not all kids have anxiety when they start a new school year.  If you are a parent with someone with a visual impairment, you can be sure the anxiety levels are high.  Don't be surprised if they seem agitated, or are snapping at you more than usual.  They might say they do not want help with homework and they might not.  But they might be relieved if you pick up the book they are reading and read it to them for a bit.  Its hard to accept help from others, especially when you feel like at that age you should be handling things yourself.  But you eventually learn that it is not a sign of weakness to ask for help.  In the high school years, kids might not have learned that yet.

When it came time for me to go to college, I applied toa few, got accepted into a few, rejected and waitlisted from others.  One of the colleges I got into was a prestigious local college.  My mother called the school to find out about their disability services and was transferred several times without success.

She called UMass and was connected to the Director of Disability Services who assured my mother she was the person who could help me.  For lots of my friends, UMass was their "safety school."
To me, it became a place where my visual challenges were recognized and alleviated as best they could.  Although it was (and still is) a huge school, I was able to receive the accommodations I needed.  And I was able to earn my B.S. in Hotel, Restaurant and Travel Administration with a GPA of 3.52.  I also had my brother close by for the first two years, which was a big plus!  :)

During college, I worked at Walt Disney World in Florida for a while, and I studied abroad in Switzerland one summer.  These were fabulous experiences for me. My parents were both very supportive and proud.  At the same time, I would be willing to bet that my mom's head was full of more fears than I could have even imagined. 

Things are so different these days.  If I was a parent with a child with vision like mine, I would get them an iPad.  It will help them tremendously.
They can read in large font, use it as a magnifier, take a picture of the blackboard and zoom in on it, and much more that I might not even realize since I do not use mine in an academic setting.  But I can tell you that if I was a student, it would be a life saver.
I know my mother would agree with me on that one!  She and my dad actually bought me my iPad! 

If I could somehow transfer all of my mom's knowledge and advice  to others who are facing a similar journey, I would.  She has gone through a lot with me and my siblings and has done an incredible job..:) She continues to show compassion and understanding in regards to my vision.

There is so much more I could say. 
Mom, I hope you know how much I appreciate you.  How much you do for me now and have done my whole life.  I love you! 




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 match.com. 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!

Tuesday, June 25, 2013

Did you know I was famous? :)

When I was 16 the Middlesex News ran an article about me and my participation in the Schepens Eye Research Institute's Swim for Sight.

Just thought I would share it.   I am attempting to use Dropbox... hopefully it will work!

Swimming toward a cure 1991

Saturday, June 22, 2013

A bit about Stargardts and how I see...

Apparently the song I posted last night would not play.  I will check it out and try to repost it sometime soon.

I thought I would post some information about the visual impairment that I have.
I obtained all of this via the Foundation Fighting Blindness website.
The site is a great source of information about many retinal degenerative diseases. 
Foundation Fighting Blindness


Stargardt disease is the most common form of inherited juvenile macular degeneration. The progressive vision loss associated with Stargardt disease is caused by the death of photoreceptor cells in the central portion of the retina called the macula.

The retina is the delicate light-sensing tissue lining the back inside wall of the eye. Photoreceptor cells in the retina provide vision by conveying information from the visual field to the brain. The macula is responsible for sharp central vision — for tasks like reading, watching television, and looking at faces.

Decreased central vision is a hallmark of Stargardt disease. Side vision is usually preserved. Stargardt disease typically develops during childhood and adolescence. Also involved in Stargardt disease is a region beneath the macula called the retinal pigment epithelium.

What are the symptoms?

The symptom that brings most people to an eye doctor is a change in central vision. A doctor looking at the retina of a person with Stargardt disease will see characteristic yellowish flecks in and under the macula. The flecks might extend outward in a ring-like fashion.

The flecks are deposits of lipofuscin, a fatty byproduct of normal cell activity. In Stargardt disease, lipofuscin accumulates abnormally. The Foundation Fighting Blindness supports research studying lipofuscin build up and ways to prevent it.

A decrease in color perception also occurs in Stargardt disease. This is because photoreceptor cells involved in color perception are concentrated in the macula.

How quickly does vision fade?

The progression of symptoms in Stargardt disease is variable. Visual acuity (the ability to distinguish details and shape) may decrease slowly at first, accelerate, and then level off.

A study of 95 people with Stargardt disease showed that once a visual acuity of 20/40 is reached, there is often rapid progression of additional vision loss until it reaches 20/200. (Normal vision is 20/20. A person with 20/40 vision sees at 20 feet what someone with normal vision sees at 40 feet.)

By age 50, approximately 50 percent of people in the study had visual acuities of 20/200 or worse.
Eventually, almost everyone with Stargardt disease has a visual acuity in the range of 20/200 to 20/400. The vision loss is not correctable with prescription eyeglasses, contact lenses, or refractive surgery.


That last line is the kicker isn't it?  With so many amazing break through technologies out there these days it is hard to believe.

When people ask me how I see, I do not really have a great way to describe it.  It is hard when you do not know what it is like to see well.  But basically when I look straight at something, it disappears, so I automatically look to the side or above whatever I am looking at.
Hence the "Are you looking at me?" issue.

When I look at people I can see them but do not ask me to tell what color eyes they have unless I can get very close...or they have those bright shiny blues like my little Ayla!
I will not necessarily notice an eyebrow piercing/nose piercing.  If you have food stick in your teeth, I will not be the one to point it out...sorry :)

I actually love to read.
I read books on my ipad and have the font set as large as possible.   Forget about paperbacks or even regular hard cover books.  Large print books...Yes but usually with reading glasses.  I used to listen to audio books on my ipod nano...and I loved doing that.  But that was when I was commuting on the T.  I guess I could do it now and try to get some cleaning and stuff done while listening... But I like the sitting on the couch part too much.

When I watch TV, I wear my Max TV glasses which magnify the screen  (about 2X I believe.)  We have a 60 inch TV and even with these glasses, I do not see detail.  I can read the guide if I walk up to the TV.

I can see color but sometimes I do have some difficulty.  I seem to be able to match my kids clothes pretty well...so that's good.  But especially if I am looking at a small item I might not be able to identify the color. 

I think if I was suddenly able to see perfectly, I would probably get very sick due to the drastic change.  Honestly its hard for me to imagine.

Friday, June 21, 2013

My Song!

OK So last weekend, Chip's cousin Mike and his wife Beth came to visit.  Mike showed us the Songify app.  So cool!  I decided to make a song to go with the blog!

It is a short song made up 3 lines which are things people have said to me.

If you are visually impaired, I am sure you can relate.

I hope everyone can find the humor in this! :)

And I hope it works!

Are you looking at me

Sunday, June 16, 2013

Dad's day

I hope all the dads out there had a wonderful Father's Day today.  I thought maybe I would take a moment to describe some of the reasons why my dad is so special to me. 

First of all he is so much fun.  He has a great sense of humor (much like my own!)  We often call each other when we hear a new joke or have a funny story to tell.  

He drives my 4 year old daughter to school every day and seriously loves doing so.  He says it is the highlight of his day and I believe him.  They love their drives together looking for animals, spotting signs, taking new roads with funny names.  and chewing gum (lucky kid!)

Now this brings me to a point more relevant to this blog.  Both of my parents have had to help me out quite a bit with transportation throughout my life.  Neither of them ever make me feel bad or like a burden for this.  They go out of their way to help me (and others) in so many ways.
I remember in high school when I used to work till midnight and my dad would pick me up.  I was always hungry (which meant cranky was soon to follow)  and we would stop at the Burger King drive- thru for an "emergency burger." It didn't matter if he was exhausted...he would never let on that he was.

Parents of children with disabilities or special needs, definitely have to adjust in different ways than other parents do.  I know people who complain about having to drive a woile town away to pick up a family member; and it surprises me to hear these complaints because I never heard them from my family.

My brother was also always willing to drive me when he got his driver's license and had his cool old AMC Concord or Eagle or something.  He was 2 years ahead of me and would drive me to school even if it was just to drop me off on days that he was skipping! :)

Anyway, as a kid, my eye doctor appointments were obviously not fun and lasted the whole day.  I would see several doctors and there would be all sorts of tests.  One in particular would entail sitting in a dark room for a while with things that reminded me of suction cups in my eyes.  My mom and dad would stay in the room with me and talk to me and my dad would act silly and tell jokes to keep us all in "good" spirits.  They would sit in the room while I struggles to read the chart.  this was no doubt heart breaking for them...

My dad is the perfect combination of goofiness and professionalism.  When around kids, he is like a magnet.  He has a wonderful imagination and children gravitate to him.  Much like a jungle gym!
But I would guess that people he works with have no idea of this side of him because he had his business-like demeanor that naturally invites respect and admiration from others.

He has always been extremely supportive of me and is a voice of reason when I need one. His motto "Don't sweat the small stuff" sticks with me all the time even though I am not as good as following it.

I could go on and on but you get the point.  I am a lucky girl!

Love you Dad!

Wednesday, June 12, 2013

And I call myself a Bostonian?

I am probably one of the only people not watching the Bruins right now.  I did watch it for a few minutes...and my husband has it on in the other room so I am paying a little bit of attention.
Sorry...Hockey is a cool sport but I have never gotten really into it.
I bet you have no idea why?? :)
But strangely enough, while its hard to see what's going on in baseball as well...I do enjoy watching the Red Sox.  Go figure.

I think in general, its hard for me to watch such fast moving action and keep track of what's going on...never mind seeing the puck.  Baseball is slower visually and in every other way.

Its similar with movies.  Those crazy action films are not for me.  .I  much prefer a comedy, drama, psychological thriller.
I pass on silent films.  And those with subtitles?  Not so much.

While on this subject, I would like to mention that my very best friend in high school read all of the subtitles to me in when we saw Dances with Wolves (in the theater!)
If she reads this blog, I want to say thank you for that.  And for being an understanding, encouraging, caring friend.  

My husband is a huge Star Wars fanatic (not a geek...really!) and  I actually do enjoy those movies. 

Any movie I watch, I am bound to miss quite a but of the detail.  But I have always loved movies and the popcorn that goes along with it!

Oh one last thing...if you are visually impaired and enjoy watching TV...or would enjoy it better if you could see it, I highly recommend a pair of Max TVS.  Not a fashion statement but I love them!
http://www.activeforever.com/eschenbach-maxtv-glasses

OK maybe I will go show some support for the B'S!  Take care everyone!

Monday, June 10, 2013

Just a quick blurb while the kids watch Dora!

My family rocks!  A bunch of my relatives have read this blog and have commented on how much they love it and that they are proud of me for doing it.  I really appreciate all of their support.

My husband is impressed at how his wife has "gone international!" :) because I have had page views from all over the world including Venezuela, New Zealand, Spain, South Africa, Martinique, Japan...
I think that's pretty cool as well.

I would love to get more comments from some viewers who are also affected by Stargardts or other visual impairments.    I am interested in their perspective, challenges, hobbies,  stories, etc...

I continue to correspond (off the blog)  with Alanna who reached out to me last week and I feel like I have made a new friend.  I am grateful that I am able to help her in some way.

The unknown is a scary thing.  I have dealt with low vision for thirty years so it is just a part of my life.  But for someone who is facing vision loss as an adult it has to be unbelievable scary and frustrating.  It takes a lot of strength and support.  But as I have said in the past, life can still be fulfilling and happy.

Sunday, June 2, 2013

Thank you!

Thank you to everyone who has taken the time to view this blog.  And after posting a link on Facebook I was completely overwhelmed by the positive responses and support I received from friends and family.  My brother who is a writer and not easily impressed( :)) had amazing things to say about it and that made me feel great.  My sister-in-law texted me first thing this morning to say she loved it.  My mom, aunts and cousin shared the blog with their FB friends.
So a huge thank you to all of you. 

A good friend of mine mentioned that she has never heard me speak this intimately about the challenges I face,.  That is true.  It is not a subject I talk about very often because it is not the main focus of my life. It is something I have learned to deal with and as they say "It is what it is."
Lately, though, I have been feeling like there is more I can do to help others.  I used to be very active in fundraising for eye research..  As a child, I took part in the Schepend Eye Research Institute's Swim for Sight for several years and raised a good amount of money.  A few years ago I participated in the Foundation Fighting Blindness Vision Walk (in NYC one year and Boston another.)  I am planning on walking in the Boston Walk this fall as well.  I feel good when I do these fundraisers but I want to help people on a more personal level. 

I do not feel like you hear all that much about  retinal degenerative diseases unless you or a loved one are affected by one.  I have occasionally heard of someone who is legally blind and accomplished some amazing feat like climbing a mountain or completing a triathlon.  I can't say I have done any of those things.  Although I did go sky diving many years ago (tandem of course!) and I loved it! I am just a normal person (debatable) living my life, raising my kids, trying to keep my house organized, etc.   I have not done anything heroic but I do face challenges every day that many others face and can be scary....especially to those who have recently been diagnosed with a visual impairment.  

It seems like the general population sees it in black and white...either you are blind, you can see well or you wear glasses so that you can see well.  It seems hard for people to grasp that a visual impairment might not be curable.
Hopefully sometime in the future there will be a cure for retinal degenerative diseases.  I know that researches are working hard on it and there has been some encouraging advances lately.
Maybe when I am 75 years old my daughters will be teaching me how to drive a car!  hahaha

Anyway, thank you again for your support and please share this with friends who might be interested.
Take care,
Heather


p.s.  I can't seem to fix the text background color...sorry!

Saturday, June 1, 2013

Introduction

I have been thinking about doing this for a while and finally decided to try it out.  I want to share my experiences as an individual with Stargardts Disease (a retinal degenerative disease which causes blindness.)  I want to reach out to others who are affetced by visual or other types of disabilities. 

My name is Heather.  I am 39 years old.  I am married to a wonderful man and have two beautiful daughters.  I live in a suburb of Boston, Massachusetts.

I was 9 years old when I was diagnosed with Stargardts Disease.  It took a long time for my parents to obtain this diagnosis.  They went to eight doctors before finally meeting the incredible one who recognized the issue.
Now that I have kids, I think about what they must have been going through during this search for an answer and my heart aches for them.  When one of my kids has an ear infection or a rash, I feel awful and want to help them feel better as soon as possible.  I can;t even imaging how helpless my mother and father must have felt.

Throughout my life, they have been my biggest supporters and advocates.  To this day they help me all the time but never make me feel dependant...which I appreciate greatly.

I could go n and on but will save it for another time.  Right now I just want to introduce myself and my new blog. 
Oh and the title..."Are you looking at me?" - this is a silly choice but it is the most frequent question I have been asked and it drives me crazy.  So why not add some humor? 

I want to send the message out to folks who are affected by visual disabilities that you can do nearly anything you want to..except fly planes, etc.  Losing your vision is tough but it is not the end of the world (which I admit to have forgotten at times.)
I am so blessed to have the most unbelievable family in the world.  I am healthy.  I have the 2 cutest kids EVER and a lot to be thankful for. Life is good.




An invisible disability

One aspect of being legally blind that causes me to have internal debates with myself is this...to look at me you would not necessarily know that I have a visual impairment.  I call it an invisible disability.
 Sometimes I feel like it would be easier if I walked with a cane or a seeing eye dog even though I am not at that level of blindness to warrant such aids.(I wouldn't mind the dog though!)

I know that it surprises people when they see me struggling to see things.  Socially it is a  hindrance.  I often wonder if the people who are unaware of my low vision just think I am rude.  It is not uncommon for my husband to point out someone who is waving at me or smiling at me, so that I can wave back.  But how many of these friendly greetings do I miss? 
In high school and college how many chances to establish a friendship or relationship did I miss?  I certainly did not have any of those "eyes locking from across the room" romantic encounters!

I do not want to come across as feeling sorry for myself because I do not.  I am merely taking a moment to describe one of the challenges I face.  Do I tell people right away about my vision?  That way they do not think I am blowing them off if I do not say hello?  But on the other hand..my disability does not define me and I do not want to bring it up every time I meet someone new.

I just got home from dinner with two of my best friends who I have known for over 20 years.  Both of them tell me they forget about my  visual impairment and that in all the time they have known me they have not noticed that I do not make eye contact well.  I was glad to hear this.    It shows I have been living my life and not letting my vision pull me down.