Eyes Apart: Living with strabismus

Would you trade part of your life expectancy to be rid of strabismus?

David Marshall writes:

Dr. David Guyton at the Wilmer Eye Institue of Johns Hopkins sent this to me along with some other articles, but this one is a very powerful reminder of how crippling strabismus can be to those of us who suffer from it. It is a study conducted by George R Beauchamp, MD, Joost Felius, PhD, David R Stager, Sr, MD,and Cynthia L Beauchamp, MD from the Department of Ophthalmology, University of Texas Southwestern Medical Center (Dr G. Beauchamp, Dr Felius, Dr Stager, Dr C. Beauchamp), and the Retina Foundation of the Southwest (Dr Felius), Dallas, Texas.

This study shows 60% of those studied indicated willingness to trade part of their life expectancy in return for being rid of strabismus and its associated effects. You can find a link here.

It speaks volumes about how debilitating strabismus can be.

This interesting item above is shared by David Marshall (who also provided some input for last week’s post.) The study linked in David’s item is called “The Utility of Strabismus in Adults.” “Utility” is defined in the article as “quality-of-life weight.”

[Update 7/9/2010: When I published this, I never expected people to actually answer the question posed in the title. During the time I was away with illness, I continued to approve comments to the blog. I am surprised and saddened that so many responded, "Yes," to that question. This answer pierces my heart with the struggle that many with turned eyes face every day.

My personal answer to that question is, "No." Of course, I'm 63, so I don't have a huge amount of life left to trade at this point. But, beyond that, I have always been challenged by struggle, and the older I get the more exciting life is in spite of my vision and other health problems. I love to find "work-arounds." If one door closes, I keep opening others until I find one with good things behind it. Keeps me busy, keeps my mind off of my difficulties, and the pay-off is great. Give it a try!]

Photo credit: G & A Scholiers

Posted in Social trauma, Strabismus, Surveys & research | 33 Comments »

Intimidated by the creeping shadow of strabismus? Here’s help!

The following item is edited and used by permission from a letter posted by David Marshall recently in our Eyes Apart Strabismus Support group. David wrote:

I often wonder if my strabismus is much like a shadow on the wall. There are days when it looms so large over me all I want to do is hide from the world. As it creeps toward me, it whispers those dreaded words, “You’re different!”. When I allow this shadow to cripple me with fear, it convinces me that I am somehow less of a person because of my condition. At the very least, I grab the sunglasses and pray no one asks why I’m wearing them indoors.

But how should I deal with strangers and their rude stares and comments? What about the job I feel I didn’t get because I have strabismus? And there’s that elusive love interest that surely wouldn’t be interested in someone less than perfect! Do you ever hold your breath around children because you’re petrified they’re going to ask “the question”?

First of all, realize that none of us are perfect and I’m not talking about those of us with strabismus. It’s a struggle for most people, strabismus sufferers or not, to be comfortable in their skin all of the time. It’s not just a strabismus thing – it’s a people thing. Everybody sticks their foot in their mouth from time to time. And occasionally it isn’t us who have the handicap, but rather the offender.

Secondly, don’t allow strabismus to define you. How do you know if it’s defining you? When we let it make us bitter, then we’re on course for allowing it to define us. That said, we’re going to have times when we’re depressed, embarrassed, or whatever. These are normal, but don’t allow strabismus to make you so bitter it is all you are.

Don’t forget that it’s good to share. We have a community here on Yahoo! Groups that allows us to encourage one another. Take part in it. Have a rough day? Speak up! Those little day-to-day things hurt sometimes. Sometimes the little things add up. You may get some sage advice, or maybe just a compassionate, understanding response, but never underestimate the power of community.

Also, give yourself permission to have a bad day once in awhile. No one can stay positive all the time. Sometimes the burden gets too heavy to bear. You don’t have to be a hero. It’s okay to admit that something hurt you. It’s okay to be frustrated by your condition sometimes. Understand, I’m not advocating going into deep depression and kicking the dog. Just don’t beat yourself up because you look in the mirror one day and momentarily hate what you see.

I won’t pretend to know everyone’s situation. Nor do I write this as a “rah-rah” speech. There are days (weeks?) I’m a hypocrite to every word of this. But yesterday I ventured into a social situation and put away the sunglasses. Was it tough? Yes, very much so! But afterwards I came away feeling like I took a step toward the shadow on the wall and saw it shrink – even if only a little!

–edited version of an item posted by David Marshall in our Eyes Apart Strabismus Support group at Yahoo. Used by permission from David Marshall.

Photo credit: Adam Nykiel

Posted in Help and find help, Social trauma | 6 Comments »

Social confidence with lazy eyes

The following item is edited from a letter posted by shayla last month in our Eyes Apart Strabismus Support group. It’s hard for some people to accept being referred to as having “lazy eyes.” We know that strabismus eyes work much harder than normal eyes. Shayla used this term about herself with confidence, and she offers the tips below to help us all be more confident with our drifting eyes:

I think you can be socially confident with lazy eyes. I know I am. It’s actually a joke in my family how quickly I can strike up a conversation. I had a great example in my Mom, who also had alternating exotropia for close to forty years before she had surgery.

The only place she wasn’t confident was sports and my dad made sure that I learned how to adjust instead of just avoiding sports. I did debate and theatre in high school and just finished a play’s run in community theatre this week. I just just tell people to look at my right eye if they keep looking over their shoulder! I knew my eyes were off but wasn’t really diagnosed until 17.

It’s funny because today I go in to have surgery. My husband was asking me did I think it would make me more outgoing? My sis was like “hello! girl already talks to complete strangers everywhere we go!

My advice:

• Preempt strangers who are looking at you. A quick explanation will stop the weird looks most of the time.
• Family/Friends: If their joking really bothers you, say something! They may have no idea you feel the way you do.
• Pictures: You have to ask the person taking the picture to help you out with this. You look away from the camera and then right before they snap the picture look back at the camera. Your eyes will appear straight in the picture (but it takes a couple of times to get the timing down so be patient). I’ve done this with lots of pictures and it seems to work. Or turn at an angle to the camera so you are not face forward to the camera. Models do it, so why can’t we?

All these things have one thing in common: You have to be pro-active and be ready and willing to talk about the condition and your feelings about it. If you aren’t comfortable with yourself, other people won’t be. I make a joke of it: “My name is shayla and pay no attention to that left eye wandering around the room!” Find out what your comfort level is and maybe try it out on friends and family first.

If you don’t know if it’s wandering, watch people for non verbal cues like for example: looking behind them like they think you are talking to someone else usually means eyes are wandering. My best friend will notice if I switch eyes before I realize it myself.

I hope these will work for you.They’ve worked for me for 29 years and counting..(only hours left though!)

–used by permission from shayla

[Lois' note: I realize many of you did not have parents or family who supported you as shayla's family did. Perhaps they even pulled you down. But rather than regret what we didn't have as we grew up, why not work on some of the recommendations shayla offers to make things better now?]

Photo credit: Mikas Vitkauskas

Posted in Help and find help, Social trauma | 26 Comments »

Lazy eye amblyopia research study

According to the European research news resource, AlphaGalileo.Org, “Researchers at the University of Bradford are seeking volunteers for a study into the condition ‘amblyopia’ which is more commonly known as ‘lazy eye’.”

According to this report, the study will be done using a “new state-of-the-art Optical Coherence Tomographer…used to examine the structure of the eye in fine detail.”

Researchers hope that as a result of this study they will “be able to tell in advance who will benefit most from treatment and, as a result,… spare some children from the trauma of wearing an eye patch for long periods of time.”

They are looking for volunteers of all ages. Please see the complete article for contact information if you are interested in this study:

Lazy eye research seeks volunteers published by AlphaGalileo.org, October 11,2007.

Photo credit: sanja gjenero

Posted in Children's vision, Surveys & research | No Comments »

Blogging again and better than ever!

Our site has been down over a week after an upgrade of the blogging software. Part was due to incompatibilities with some of our older plugins and our theme template as well. So we’ve had a face lift! I hope you’ll find our site easier to use and more helpful than ever. I’m still tweaking things, and if you see something that needs fixed or a feature you’d like to recommend, feel free to share.

The down time showed me how important this blog is to help those needing support for living with strabismus find our Eyes Apart Email Support group at Yahoo. Normally several new members join the group each day. We had only 3 new members in the past 7 days that this site was down.

Have a look around the site, and join our Strabismus Support group to get in touch with others who have strabismus problems similar to yours!

Photo credit: Marja Flick-Buijs

Posted in Blogging, Help and find help, WordPress | No Comments »