Wednesday, September 14, 2016

Second guessing is second nature

Second guessing is second nature

When you are visually impaired, at least in my experience, you second-guess yourself a lot. 
If I see somebody I think I know, I have to get a better look. If I see something on the floor, it might be a bug but just as well could be a toy.  Something down the street could be a trashcan or a person for all I know! No offense to anybody!

There have been many times that I have made mistakes which lead me to second-guess myself in future situations.

I have waved or said hello to somebody who I thought I knew but was a stranger.

I have bought curtains online with cheetah print rather than flowers.

I've put sugar on my pasta instead of Parmesan cheese.

I've gotten on the wrong train because I read the sign wrong.

I could give a million examples. 

Situations that people get ultra embarrassed about happen to me on a frequent basis!

I am so used to my eyes not seeing things well that I basically never trust that what I think I am seeing is actually there. 

This may sound like complete  BS but I really think it is true.  I think my habit of second-guessing what I see has also caused me to second guess things that I do and decisions that I make.

But I know that we all second-guess ourselves.

I was just watching a video where somebody was talking about ways to improve your confidence level. Her first tip was to shut the voice up in your head that second guesses. That voice that says no you're not good enough, you can't do this. 
This is something I am working on.
And I encourage you all to do the same.
When the voice tells you you can't do something, don't listen. Turn it around to say something positive. 
That is where I stopped writing  yesterday.  
Then last night I was watching America's Got Talent. I haven't watched it all season and last night was the finale. I only watched a few acts.  One was Jon Dorenboss, a magician. He did a pretty amazing repertoire of tricks, while giving an inspirational speech. One thing he said that really stood out to me and relates to this blog post was

"When you are down, don't listen to yourself, talk to yourself"

Basically as the example I mentioned earlier stated, shut the voice up in your head and turn it positive. Why is that voice always negative in our hand? Why do we always second-guess ourselves and think the worst? I don't know the answer to that but it seems like it's just our natural instinct and we have been trained to think that way. 

So how do we turn that voice from negative to positive? 

Well, one thing that I have done over the past year and a half and is a vital behavior for coaches is personal development. When I first heard about this, the first thing that came to mind was Chicken Soup for the Soul. Honestly I have never given much thought to those self-help books. I have not ventured into that section of bookstores on too many occasions. But because it is a vinyl behavior of coaches and so many coaches swear by personal development, I decided I better give it a chance. What is there to lose? So I have given it a try. I have read books, I listen to books, I listen to podcasts. I watch motivational speakers on YouTube. And you know what? It really friggin helps! Give it a try!  Check out the book "You are a Badass" by Jen Sincero and "The Slight Edge" by Jeff Olson. Check out Podcasts by Shaun T  (Trust and Believe)
and Chalene Johnson (The Chalene Show.) or School of Greatness by Lewis Howes. 
There is so much out there and it can benefit everybody.

I was just talking about this with my mother the other day. 
I feel like we grow up with the goal of graduating from high school, then college, then getting a great job. We get to that goal and then what? We really are not taught how to deal in real life. 
So when things start going wrong for us we aren't quite equipped to deal with it. 
When we start getting rejections after job interviews, we aren't treated the way we would like to by coworkers or employers, we have problems with landlords or neighbors, we lose loved ones, tragedy strikes, etc. 

This is kind of silly but hey I am on mom of two young kids. I relate it to climbing up a beanstalk. So we are climbing up and up trying to reach our goals. Then a giant stick his foot down and pushes us down. We go down a few feet and then start climbing again but maybe a bit slower and more cautious this time. This happens repeatedly. That's what happens in life. We will be going strong for a while, then we get knocked down a few pegs by life. If we are not doing anything to counteract the negative, we sink deeper and get stuck in a rut. That is where personal development comes in. It has helped me tremendously by giving me the tools to deal when things go wrong. I have noticed that instead of dwelling on the problem, I am more able to get to the task of fixing it. I have also noticed it in relationships. A couple of months ago, somebody lashed  out at me on Facebook for they completely irrational reasons. I did not let this get me down. In the past I would have dwelled on it for days. Not now. I was able to put it behind me and move forward. When people act irrational, you really can't interact with them so I let it go. Just like Elsa in frozen! Ha ha! Yes I have two girls. I am actually singing that song right now in my head.

Oddly enough, the day after I was talking to my mom about how we need to teach life skills and promote personal development to kids, an article came out stating that my towns high school is going to start a program teaching life skills. I think this is awesome and I hope the program is received well by the students! And I hope they incorporate personal development.

OK, I think that's all for the moment. I urge you to give personal development a try. This is coming from a former skeptic. And feel free to share any personal development books, podcasts, videos that you would recommend. I would love to hear from you!

Tuesday, March 31, 2015

No Excuses

It's been a ridiculously long time since I have posted here. And I have no excuses. I have wanted to write so many times and never did. Now I am at the point where I feel like I will burst if I don't write... So here I am!

I think I have been "stuck" for a while. Stuck in the same old life routine. Going through the motions and getting very overwhelmed with all that there is to do... Cleaning, bills, laundry, holidays and birthdays, etc.   I waste time thinking and worrying about things not worth worrying about and/or are out of my control.  I am literally stuck in my house a lot which doesn't help.  I am very happy that warmer weather is just around the corner!

I have been thinking about how much my life has changed in the past decade. I used to live in the city and work long hours in the event planning field. I have never liked using my visual impairment as an excuse for anything. But in reality, the type of work I did caused strain on my eyes. Since it takes me longer to focus, it took me longer to get work done. Thus, I would work long hours, get exhausted and eventually get so overwhelmed and stressed that I would want to quit. 

 I was not consistent with my physical fitness during this time.  Sure I joined gyms and actually went sometimes. I participated in aerobics and yoga classes. I even joined a boot camp program that ran and exercised around Boston. (That was a killer but I enjoyed it.)   I was never satisfied  with my weight...never way too heavy but never quite as fit as I would have liked.
Fast forward to today.  I live in the suburbs, have a wonderful husband and two beautiful  girls.   I have a nice house which I find very difficult to keep organized.  I do not work full time but babysit often.  I have no desire to go back to working in the corporate world, straining my eyes at a computer screen (at least not right now!)  But as I said, I have been feeling "stuck" lately.   I have been feeling like I should be doing something meaningful. 

So...I have made a decision which I can already tell will change my life. 
I have become a Team Beachbody Coach!
Ok this does not mean I am trying to fi into a tiny bikini by the summer. If it happens that's great but that's not my goal.  I do want to feel healthier, stronger, happier, more energetic,  and more self-confident. I will be happy if I can rock a stylish one-piece at the beach!  While in Rockport, I want  to go into the shops and try on a cute sundress and feel lgood in it.  I do not want to look at pictures of myself and think I look chubby,

In a previous blog post I wrote about my experience with Focus T25. Well I did that (and loved it) and then stopped and let myself go a bit. Now I am in my 6th week of PIYO (a Pilates/yoga mix) and this time when I finish the 8 weeks, I will keep going with the advanced program. 
I will not make excuses. I can't! I am a coach now! I want to motivate others so I better keep it up!  It helps that I actually really LOVE PIYO! 
Since I can't drive myself to a gym and probably wouldn't even if I could, the DVD workout programs are perfect for me.  (I never felt comfortable at gyms.). I can plant myself in front of my 60 inch TV and pause it if I need to get a closer look.  I can workout on my own time....often right after putting the girls to bed. In the past six weeks I have lost about five pounds and can see a big difference physically and emotionally. I have been drinking Shakeology and it feels great to fill my body with such nutrition.As Chalene Johnson says exercising makes you a happier, healthier, and more patient person. She is so right. It has helped me to not get so overwhelmed when faced with various situations.  It is teaching me that I can change for the better. I like myself better when I feel happier. I feel happier when I exercise! It's a circular effect.   I have noticed myself being more patient with the kids, feeling more self-assured at social events, even ready to tackle household projects! 
So there are a number of reasons why I am excited to launch my own Team Beachbody business. It's something I can do without needing to get rides. It will not give me  headaches. It's all positive! I am on a team with my awesome sister, mom and cousin. We have all been working hard and motivating each other. And we are part of a bigger team with an amazing  team leader. She provides excellent training and support because she legitimately wants everyone to succeed. 
I am grateful to my sister for helping me realize that this was the right move for me!  I have seen how positive this experience has been for her in such a short period of time.   I am excited to see where this takes me!  I encourage others who might be feeling the way I was to consider joining me in this adventure!  

Tuesday, July 29, 2014

A brush out of my comfort zone

I recently participated in a Paint Nite event at a local bar. You have probably heard of this but if not, it's a program where local artists conduct a 2 hour art class teaching a group of people how to create a certain painting. They are usually held at bars and  people can enjoy some wine or other beverage while painting. I do not drink so unfortunately I couldn't blame my lack of talent on drunkenness! :)
By the way, they tend to have Groupons for these events if you are interested! 

I had been nervous prior to the event, wondering how in the world I would be able to see what the artist was doing. Before that night, I don't think I had painted since childhood (unless pottery painting counts.) In my family, my mom and my sister are the ones with the artistic talent. In fact, my sister is probably the most talented artist I know. My parent's house is full of her beautiful and unique artwork. My friend, Shanna, who went with me is also very artistic so I was a bit intimidated going in. 

But luckily, when I got there, my  nerves settled a bit. The room was set up in a way that there were seats very close to the artist, so I snagged the closest one. I then told the artist and the event assistant that I am visually impaired. They were very cool about it and suggested I snap a photo of the finished painting. This was a terrific idea. And the artist actually suggested it to everyone.
The artist teaching the class was awesome! He was encouraging and non-judgemental.  He made me feel more at ease than I thought I could be. He explained each step clearly and was open to questions. The painting we did was called "Blue Twilight" and according to him was very easy and "forgiving" (meaning you could basically do no wrong with it.)  He was not the original artist of the painting. The finished product depicted a foggy forest at twilight. I feel like mine portrays a "Spooky Old Tree" (Berenstein Bears reference) but I am pleased with the outcome. It will not win any awards but I am actually okay with people seeing it!  

I am glad I gave this a shot!   I now feel a bit more comfortable with a paintbrush in my hand. I am actually looking forward to trying again!  

Wednesday, July 16, 2014

My kids teach me to "see" what matters

It's been a while since I have posted on here! Not even sure where to begin. So I will start with what is on my mind.

Right now I am in Rockport (a small beach town in Massachusetts)and the kids are taking a walk with their Nana. I have a few minutes so I figured I would get a bit of writing in.
It's crazy to think back to three years ago when my parents insisted I come up to Rockport every week because they were worried about my mental health. And to be honest.. So was I! Ayla was only 1 month old and was a pretty cranky baby. Alexis was 2 1/2 and very happy and active. I was suffering from postpartum depression and basically just going through the motions of life. I felt hopeless and  could not even imagine feeling like myself again. Thank God that after a few months and lots of help, those feelings subsided.

Now it has become tradition to come up to Rockport for a few days a week during the month that my parents are here. In fact, for a while Alexis would list the seasons as: Winter, Spring, Rockport and Fall!  Now Ayla is three and VERY happy. Luckily her mom's depression at the beginning of her life did not have a lasting effect on her ability to enjoy life.
I still do get overwhelmed with life but it is very different than those dark days. I find myself stressing about money, the house, the future, etc. Bu when I just sit back and watch my kids, I am usually able to push through the anxiety and not allow it to take over.

A few nights ago I had a moment that made me realize I needed to let the stress go and enjoy life as it happens. I was putting the kids to bed and Alexis noticed that I was wearing my new "Life is Good" shirt. She said "It should really say 'Life is Great!'" 'I realized that she was right and I am so happy she feels that way. It makes me feel like I am doing something right if my children are this happy.  And it shows me that feeling happy and loved is what matters. Somehow things will work out.. Bills will eventually get paid.  The house will probably stay messy.  But we will be OK.
Everywhere we go people comment on how happy Ayla is. It's probably because she never stops singing no matter where we are or who we are with. I am curious to see how she adjusts to preschool when she can't just belt out songs at the top of her lungs whenever the urge hits!

It's wonderful that my parents share their vacation with us.  The kids absolutely love coming here - playing on the beach, taking walks, getting ice cream and cupcakes, watching movies and more.  I love spending time away from my house for a while!  (Of course we miss Chip!)  It's hard being stuck at home for days on end. This way, we enjoy a few days playing in our yard and a few days here... Breaks up the routine.  And being with my mom and dad is always a treat!

I am going to try to get back in the swing of writing more regularly. There is no excuse for not being able to set aside some time for something I enjoy.
I hope everyone is having a wonderful  summer!

Wednesday, April 23, 2014

You are not alone

This post is directed to people who have recently been diagnosed with a visual disorder or have a loved one who has. I know it is a shocking diagnosis and you will certainly need some time to process it. You have every right to be angry, sad, scared, even pissed off. Believe me, these are normal reactions. What I want to convey here is that you are not in this alone. You might feel like you are. You probably do not know anyone else with the same diagnosis. But we are out there. One reason I love social media (and there are reasons I do not like it as well) is the way it can connect people who are in a similar situation. 

"You never know how strong you are until being strong is the only choice you have." You will learn through this process that you are stronger than you ever thought. There will be times when you feel helpless, lost, unsure of the future. But you need to remember there is so much more to you than this. You will get lots of reactions from friends, co-workers, even strangers that often are the opposite of helpful. I have heard on many occasion "I could not live without my car." This statement always makes me cringe. I feel like saying "Actually you could. It would just take a lot of changes in your life."
You will have certain friends and family members who will try to understand and offer as much support as they can. Embrace their help and be honest with them about how you are feeling.  I know how hard it is to lose so much of your independence. Asking for help is not easy and can make us feel inadequate. But think about how much you would want to help others if the roles were reversed. There should be no shame in needing assistance.

I also hope that you will seek out others in your area who are blind or visually impaired. Being able to confide in someone who has gone through the same thing is priceless. It might take some time before you feel comfortable doing this but please try . Check out your local chapter of the Foundation Fighting Blindness. You will probably at times want to stay in bed and cry. That's OK too...  but I hope you will not let this feeling of helplessness overcome you. You have your life to live. And this life can still be full of happiness, love and beauty.  

I think it is important to stay active. As a teenager, I ran track every winter and spring season of high school. I also played soccer and ran cross-country track. I did not realize it then but this gave me an outlet for my emotions. The anxiety, stress, anger I felt got channeled to my running and it propelled me to do very well. I could not play other sports I would have liked to play (such as lacrosse) so I made the most of what I COULD do.
That is key... Focus on what you CAN do. You will find creative ways to accomplish your goals.

As a friend once said to me... You do not need good vision to be able to see the beautiful things in life.  What makes this statement even more meaningful is that it comes from someone who was diagnosed with Stargardt's last year. She has amazed me with the strength she has shown while going through this! 

Thursday, April 3, 2014

Laugh With Me

Things have been a bit stressful lately so I have the urge to switch gears and focus on humor for a bit.

Last month, my husband and I went to a comedy club in Boston to see the hilarious Josh Blue. We knew of him from when he won Last Comic Standing a few years ago, and we have talked about catching his show if he comes to town. So for Chip's birthday, I bought tickets to his show at Laugh Boston.  If you are unfamiliar with Josh Blue, I encourage you to check him out. He has Cerebral Palsy and finds humor in himself and life situations. He has a stage style all his own.   The show was great despite the drunk members of the audience who seemed to want their 15 minutes of fame. They were a major distraction and undoubtedly affected the overall tone of the show. But I imagine this is par for the course for stand up comics. We had some good laughs which is always good for the soul! We even got to meet Josh after the show! 

Recently we started watching the new sitcom Growing Up Fisher. It is a semi-autobiographical series about an 11- year old kid and his father who is totally blind. I remember a few months ago when I saw ads for the show, I was quite skeptical. A show about a blind guy that is supposed to be a comedy? Doesn't seem very politically correct and  might be a bit offensive.
Well, turns out I love the show. In fact, it is one of my favorites. 

This week's episode had a touching moment that sticks with me. The boy, Henry, was nearing his twelfth birthday and was very worried that he was going to go blind just like his dad had. He does not mention this fear to his father.  Instead he gets himself into trouble by sneaking into the girl's locker room so he could see naked "boobs" for the first and maybe last time. Only problem was that he and his buddy got caught hiding in a locker and it turned out to be the boy's locker room. Anyway, he finally confides in his dad,and when asked why he has never mentioned his fear to him, he says because he didn't want his dad to think he didn't want to be like him. The response of the dad, Mel Fisher was to say how sweet and insane that was. That of course Henry wouldn't want to be blind. "I don't want to be blind!" he said. And this was surprising to the boy because he had never heard his father complain about his vision. He went about his life and never let his vision drag him down. But no.. He did not WANT to be blind. 
This hit home for me because I do not want my kids to think that I let my vision hinder my life. I want them to know I am string and they are too. If there are things I can't do, we will be creative and come up with a plan. I will probably not cut down trees with a chainsaw like Mel Fisher but I will do what I can!
Again, if you have not seen this show, go on demand and watch it! Do not rule it out because they are laughing at a blind guy. The show has a way of making you laugh but not in a derogatory way towards anyone. You will see what I mean. 

The father is played by J.K Simmons who I knew as Juno's dad and the psychiatrist from Law and Order. He is wonderful in this role. And the boy, Eli Baker, is great as well. The mom, who has recently separated from the dad and is attempting to reclaim her youth is played by Jenna Elfman. She is very convincing as an annoying mom!

They say "Laughter is the best medicine" and I am in full agreement. There was a time nearly three years ago (right after the birth of my youngest daughter) that I did not think I would laugh again. I am happy to say that I got through that very difficult time and am now making sure my life is full of laughter. It is pretty hard for it not to be when you come from the Gangi family, are married to a Garbitt and have two little ones!

I would like to end with a story that relates to my vision and is very funny. So do not feel bad if you chuckle a little.  A few years ago, my good friend Kate was visiting, and while she was here I got a package delivered. I was very excited to see the new curtains I had ordered online for my kitchen. They had looked so cute -black valances with a trim of white with black flowers. 
I opened the package and we looked at them. "Cheetah, Heather?" Kate asked. We both laughed and I did not really need to explain that I did not in fact want cheetah print curtains in kitchen!
Those got stashed away in a closet for months until I asked my mom to help me change them into something I could use. Coffee cups replaced the cheetah print, and they look adorable in my kitchen!  Thanks Kate for sharing that moment with me! And thanks Ma for your constant willingness to help!


Monday, March 3, 2014

My kid needs glasses... So what?

A recent experience has had me wanting to write a blog post but not quite knowing how.    It is something I apparently needed a long time to process.

On Valentine's Day, we brought our 5 year old to the eye doctor.  We learned that she has an astigmatism that causes her right eye to be weaker than the left and cannot be corrected to 20/20.   She needs to wear glasses.    Big deal, right?

As we were leaving the appointment, the ophthalmologist assured me for the second time "Her retinas look beautiful."

So, obviously this is not a major issue and I am VERY relieved that her retinas are fine.

So, why have I been sad?

The whole experience of our visit to the eye doctor is almost indescribable. It brought back memories of my childhood eye doctor visits.  Sitting in that chair not being able to see much more than the Big E.  Guessing what letters were there and feeling like I should be able to do better.  Obviously knowing I had no control over it but still feeling inadequate.

How awful and heart wrenching it must have been for my parents!

At my daughter's appointment, I sat there not being able to see what she was supposed to be seeing.  So the only way I knew if she was seeing the letters correctly by the doctor's reaction.  When she struggled to see, I so badly wished I could help her... The emotional reaction I had no doubt pales in comparison to what my parents felt years ago. 

I have never had much sympathy for people whose vision is correctable by glasses. While some might complain about wearing them, I wish it were that easy for me.  So, finding out that my child needs glasses should not be a big deal. And it's not.  So why does it make me sad?

Is it that my kid is not perfect? Is it that I want to protect her from the teasing she will inevitably experience at some point?  Maybe its because, I know she does not like being singled out.  Or maybe I have had enough experience with low vision for all of my kids and was hoping they would not have to deal with it.
 I don't know.

But, my  sadness is definitely overpowered by my relief that there are no signs of Stargardts.

The day after her appointment, she was having a hard time falling asleep and when I checked on her, she asked me why she needed glasses and started to cry. It broke my heart. I guess it's just hard to see your child go through any type of struggle, however small. 

When we went to pick out her frames, she instantly selected a purple pair with gems on them. They just so happen to be the pair my husband knew she would go for.  He works at the practice where the optical shop is located so he had scoped them out days before.
She was actually kissing the frames that day!
We picked the glasses up this past Friday.

I must say she looks absolutely ridiculously cute in them!   She wore them to a birthday party for one of her friends on Saturday. I was so proud of her for choosing to wear them.  We had said she could leave them off while at the party (an indoor playground with lots of inflatable slides, structures, opportunities to tumble and fall.)  But she wanted to show her friends.  She got positive reactions, especially from the other parents! I think this will make wearing them to school on Monday an easier transition for her.

To summarize the complexity of my state of mind lately:
I feel sad that she has to wear glasses.
I feel extremely happy that her retinas look good.
I feel guilty for feeling sad
I feel empathy for those parents out there whose kids have vision like mine
I feel grateful for my amazing parents.
I feel proud of my little girl.
I feel lucky.

Sunday, February 2, 2014

Daily Life

Some of my friends have told me that they forget about my eye problem. I think sometimes I do too...
Well, not exactly forget.. But go about my daily life the way I do, using tools to help me see. It is just habit to have my ipad or iphone handy to magnify text on labels, bills, etc.  I know I miss lots of details on TV and in my surroundings but it is what I know.  I have accepted it and understand my limitations. 

A few days ago, I had  a Peapod grocery delivery scheduled from 7 - 9 am.  At 7:15, I noticed the delivery driver coming down the driveway. I went out to the mudroom to open the door for him and he said "I'm right here." My assumption is that it looked to him like I was looking around for him or not looking directly at him.

It got me thinking of how people with visual disabilities(or any other impairment) get used to doing things a certain way, establishing our routines, living our lives. Our family and friends know us and are used to seeing these routines, or they instinctively help us with certain things. For instance, my friends will read aloud the flavors at the frozen yogurt shop or my mom will help me complete forms for my daughter's school.

When we come across people we don't know, the dynamic of the interaction is quite different. We might get strange looks from the post office counter attendant when we whip out a magnifier to check an address. Or when we mess up the debit card transaction at a store because we are unfamiliar with that particular keypad . (Personally I wish they were all the same!)

I do like meeting people and making new friends but there is often a fear of what they might be thinking of me. Although I am legally blind, I can sense when someone is looking at me and I start to wonder things like "Does it look like I am not looking at them?" "Am I taking too long to fill out this form?"

I don't blame people for the double take or their curiousity. Its not everyday that you see a 30- ish looking person with such bad vision. And as I have mentioned in the pasr, not using a cane or guide dog makes it even more surprising.

Simple things we do can cause anxiety. I remember when I worked in Boston and took a bus every day, I would feel so much more relaxed if the bus stop was only for that bus. If several buses stopped there, I had to figure out which one was the one I needed. Often I would ask the driver as I got on and I was definitely  met with some annoyance. Some would tell me to look at the sign. Again, as this would be my first interaction with another person that day, it would often sour my mood. At work, I had my computer screen zoomed to a pretty huge font and would often get comments from people about that if they came to see me in my cubicle. Going through the day like this can get exhausting!

Nowadays, the setting and circumstances are different, but they are still there and still cause some anxiety.   Grabbing donuts, crossing the street, shopping for clothes... These are seemingly simple actions. But not necessarily for people like me.

OK enough about things that cause anxiety.  Life's important things outweigh any of this. I can't let a small insignificant encounter affect my mood. I do fluff things off much easier than I did before having kids. They need me to be strong and confident in my abilities as a mom, and that I will always strive to be!

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!

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


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 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


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


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.

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!



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!