Me and My Lazy I

Still Here, No Surgery

2009-10-07T16:07:00.000-07:00

I stopped posting on this blog at the end of 2007. It's hard for me to remember all the events in order that delayed my surgery and put all of this on the back burner...again. I'll try to reconstruct that at some point soon.

I plan to start posting again, to renew my interest in pursuing the surgery. So if you've been checking, or recently found me through a forum, please start checking back for regular updates.

Strabismus and Fragile X OR Another Reason I Want Corrective Surgery

2007-12-16T23:04:00.000-08:00

In my post 26 Reasons to Get Eye Corrective Surgery I listed as #3:

My character and intelligence should get a fair chance to speak for themselves.

Strabismus is often associated with lower intelligence. It's usually a subconscious perception, but nonetheless. One reason for this is because strabismus is linked with Fragile X, or in laymen's terms, a common cause for mental retardation. So on some level many of us associate crossed eyes with mental impairment.

Of course the minute any of us who do not suffer from mental deficiencies open our mouths, that notion is dispelled. Still, it is a valid reason, one of many, to want to have strabismus corrected.

How much does this really affect someone else's perception of me? Consider this from Negative social bias against children with strabismus (2003):

"Strabismus might also be a handicap from an educational point of view. It is particularly interesting and important to note that children with strabismus may not be given the same opportunities as others at school. We demonstrated that teachers have major preconceptions regarding the performance of strabismic children. They believe that these children may not be as capable of learning as 'normal' children and may not be able to fulfill responsibilites given to them. Besides, they prefer to assign duties to 'normal' students during cultural activities at school. These results strongly support the suggestion that strabismus may potentially have a negative impact on a child's education."

While it's true that many adults go on to overcome such bias, they no doubt are continually facing a subtle, and biologically wired pre-judgment at the perceiver's sub-conscious level.

Status Update

2007-12-06T12:14:00.000-08:00

So, yeah. Apparently it takes my insurance company a month to send me a directory of potential surgeons that they will cover.

It's hard to give you an exact update. Boston Children's Hospital Boston has been as helpful as they possibly can be. A surgeon there is going to review my list of potential surgeons that are IN my network and we'll go from there.

Stay tuned.

New News is Good News

2007-11-05T06:30:00.000-08:00

We interrupt this regularly scheduled blog to bring you some GOOD news.

The blog gods have shined down on Blue-Eyed Super Strabismus Girl. An angel and compadre stumbled across her blog and passed it on to someone of influence and extensive experience. When we asked Blue-Eyed Girl how this made her feel, she had this to say:

I've been so surprised all along at the response I've gotten to this blog. I've had lots of people share their own fears, struggles and triumphs with me. People don't understand how deep the effects of this condition go. And yesterday? When I got this amazing email from someone who wanted to help? Yeah. That was really inspiring.

Blue-Eyed Girl wouldn't reveal who the two helpers are, but we can all be reminded that goodness still abounds in this world.

Strabismus Surgery Before and After Photos - A collection of websites

2007-10-30T20:27:00.000-07:00

Yes. I am still here.

No. I haven't had the surgery yet.

My life has been taken over with other various and assorted chaotic events and higher priorities. Organizing this surgery takes a lot of time, as I found out the first time around. Phone calls, consultations, paper-work, physicals, more phone calls. But I'm clearing the deck so I can dig in for round two.

In the meantime, I noticed that a lot of people find my blog when they are searching for before and after pictures of strabismus surgery. I remember trolling the internet for before and after surgery photos when I was starting to think seriously about this surgery. I wanted to be sure that battering through my fear was going to be well worth it. There weren't a lot of pictures then. There aren't a lot of pictures now, and one could spend hours in Google looking for such pictures.

Here I'm compiling a list of links to before and after images of strabismus surgery. If you're visiting and you've stumbled across some good ones I don't have listed here, please share in the comments. For now, here are a few to start. I will add to this list as I find more.

Scroll over before pictures to see the after images for 5 types of eye alignment surgeries.
http://www.pedseye.com/treatment_results.htm

This site has a series of five before and after pictures, mostly of infants and children. One adult case is featured.
http://www.straighteyes.com/beforeandafter.htm

Only two pictures, but a nice simple explanation of surgery.
http://www.mypedeyedr.com/StrabSurg.htm

Takes you through the stages of eye muscle surgery. Only one before and after picture, and it is not clear if it is an illustration or an actual person.
http://www.dhmc.org/

I'm Neglecting You and Myself

2007-09-23T18:24:00.000-07:00

Hi. It's me.

I haven't been writing much and there's a reason for it. The reason is that I haven't done a darn thing about pursuing this surgery or the lawsuit that everyone I have shared this story with tells me I should pursue. Once I hit the insurance snag, not once, but twice, I let the system derail my goal to get my lazy eye fixed once and for all.

The truth is, it took me so long just to summon the courage to even think about having the strabismus corrective surgery that when things went awry, it was very easy to let other priorities get in the way. But I am failing all of you and myself. So I have made a commitment to make some phone calls this week to get things rolling again.

Please comment, please write, please let me know that you are counting on me to go through with this. It will help, I promise.

Does This Make Me Feel Better About my Strabismus?

2007-09-06T18:39:00.000-07:00

Through a trail left by someone who found me on Google, I found this post called "Strabismus and the Rich and Famous". Abraham Lincoln and Barbara Streisand are included. The list isn't exhaustive, I know people have mentioned a couple of other famous actresses with a lazy or crossed eye that I cannot now recall. If you know of any others, feel free to enlighten me in the comments thingie.

The site itself is quite informative and offers everything from random (or technically useless information) like in the above, to detailed information about various solutions for strabismus. They also offer one of the most straightforward definitions of strabismus that I have read. Simply put, strabismus is any ocular misalignment. You can read the more detailed defintion here.

For the record, I think Barabara Streisand is quite striking.

Tired of Strabismus Surgery Vs. Insurance

2007-09-05T23:02:00.000-07:00

I'm tired baby. Tired of the insurance run around.

When I saw Michael Moore's movie "Sicko" a couple of months ago, I had no idea I would soon be embroiled in my own insurance battles. Scratch that, I had a feeling. Still, things have been frustrating. My surgery was set, cancelled, set again, and then cancelled again. The first surgery was cancelled due to a bad cold I contracted that left me with a cough. The anesthesiologist wouldn't have it, I had to be symptom free for four weeks.

So, I rescheduled for August. The date was quickly approaching when I got a phone call from the surgeon's office. Poor sweet Pat had to break the news that my insurance had denied coverage because the surgeon I chose was out of network.

Let me clarify, "out of network" does not mean that my insurance doesn't cover this surgeon, just that within the greater insurance network there are apparently multiple networks, and my surgeon and general practitioner were not in the same network.

Ok, so I asked how much it would be if I paid for the surgery myself (some generous friends and family had offered to help me out with this). Pat told me that she would contact the finance department and get back to me with a figure. An hour later, her voice was a little softer, more hesitant.

"Um, you can't pay for the surgery yourself."

Moment of stunned silence.

"So, if my insurance denies coverage, I can't pay for the surgery either?"

"That's right."

"I don't understand."

"I know, neither do we. Apparently your insurance company and the hospital have some kind of contract...(awkward silence)."

"I see. That doesn't make any sense, does it?"

So now I'm pondering the idea of bringing a lawsuit against...well, that's the question isn't it?
Who exactly is responsible for this? The insurance company? The hospital?

Or, I could go to a surgeon in my network. Start the process over.

10 Reasons NOT to Get Corrective Strabismus Surgery

2007-05-02T19:00:00.000-07:00

Ok, I confess. I've dropped the ball again. I don't know how people go through these insurance and phone tag battles and still work, raise children, clean the house, or sleep! Still, part of my less than aggressive approach can be attributed to fears and demons.

Here are 10 of them:

The surgeon will tell me I'm not a candidate for the surgery and then all these years of working myself up to it will have been for NOTHING.
I will lose part of my identity. After all, I've looked this way my whole life!
I will be one of those unlucky patients that falls into the wee percentage of freak accidents and will be far worse off than I am now.
My surgeon will be distracted by a spat with their spouse the night before, operate on the wrong eye, and ruin me.
Insurance won't pay and I won't be able to justify the expense of a cosmetic fix.
I'll look "vanilla" when right now I'm a flavor twist!
I'll be blinded.
The surgeon will grossly over-correct.
The surgeon will grossly under-correct (not nearly as bad as #8...*shudders*).
Oh, I dunno. Because I'm SCARED!

The good news is that this list is not nearly as long as my 26 Reasons to Get Corrective Eye Surgery. That's something.

Stay Tuned

2007-04-18T15:37:00.000-07:00

More updates are on the way, including the "26 Reasons Not to Get Surgery".

It's going to be juicy.

26 Reasons To Get Corrective Eye Surgery

2007-04-09T20:14:00.000-07:00

After today's earlier post, I'm feeling renewed, refreshed, and ready to go another round with insurance companies and receptionists. Ready to be my own mental coxswain. Ready to get on the phone and start pushing buttons again.

I thought, "what better way to psych oneself up than to make a list of reasons"? Isn't that what everyone does? Ok, sure, I could listen to the Rocky theme over and over, or praise myself with positive self-help talk in the shower ("You are a winner"), or do 50 jumping jacks, but I like making lists. It means I get to write, and writing is good.

I want this surgery (no matter how petrified I am) because:

They say eyes are the "windows to the soul" and I don't want anyone thinking my soul is warped.
Eyes are the first point of contact when meeting someone new...unless of course, you're a woman, he's a guy, and he's staring at your chest instead...and we all know what a stupid no-no that is.
My character and intelligence should get a fair chance to speak for themselves. They've got a lot to say!
I want to lose myself in a beloved's eyes.
When I get tired, I don't want to feel the pain caused by the muscles of my "lazy eye" straining.
Physicality is important in circles of influence and importance, even if nobody dares say that out loud.
I'm tired of "overcoming" it in new situations, having to prove myself a little more than the next Joe. So much energy having to be wasted that I feel is being channeled away from more important and noble things.
Yes, I'm going to say it, I want to feel pretty. Not gorgeous, not perfect, just bloody symmetrical.
The elephant in the room really misses his family and wants to go home.
I want to hold a gaze and not wonder...
I want to put to rest that quiet, subconscious, yet persistent voice of self-doubt that has accompanied this condition for so many years. Stupid sub-conscious voices!
People should feel at ease around me. More is accomplished when people are at ease with one another.
I want to stare the whole world straight in the eye.
I want to beam love-rays outa my straight eyes.
I want to have staring contests with strangers in bookstores...and win.
I've still got peripheral vision and I want to maximize it.
I deserve it.
You deserve it.
The medical technology exists.
Surgeons need practice.
Cruel people shouldn't have automatic ammunition.
It's a terribly awkward moment for all involved when I call on someone and they don't know I'm looking at them. And why should I have to memorize names to compensate?
I've lived with it long enough.
It can close doors of opportunity.
The tendrils of childhood anguish still have hold of my soft innards.
I deserve it.

Now look, I can hear some of you tsk tsking that I'm feeling sorry for myself. BBNNNNHHHH...wrong answer! For a small girl, from a poor town, with a lazy eye, I get a hell of a lot done. I've never sat around feeling sorry for myself while the world passed by, and surgery or not, I'm certainly not going to start that business now. But these are the honest truths, and I want to face them. I want you to face them.

Where I listed things relating to judgements, or closed opportunities, I am referring to my experience and the confirmations of science (follow the links on the right). Where I list things referring to human relations, I am referring to the poetry of symmetry, and the harmony of beauty.

Surgery or not, successful surgery or not, I will always be me. And I'll still kick your arse in a staring contest any day of the week!

Update II

2007-04-09T08:16:00.000-07:00

There is no update. Sad. But true.

I was afraid this would happen. There aren't enough bloody hours in the day to make all the necessary phone calls. When I hit that last dead end, I dropped the ball. Albeit temporarily, but still dropped it. It nags at me daily but my work situation doesn't allow for too many personal calls during the day.

Actually...as I sit here, I realize there is a profound update. Not on insurance companies, or who my surgeon will be. On a personal level.

Some of you have remarked, either here or through personal email, upon my bravery at sharing this story so "publicly".

Yeah, damn it, I am brave! I'm finally talking about the elephant in the room. Blogging about this is seeping into my "walking in the real world" life, and I'm talking about it more openly there too. And I'm pushing others around me to talk about it more honestly with me.

Trouble is, with something of this nature, mentionings are in two categories. "Those who mention" and "Those who don't". The first group (this is from a lifetime of experience folks) tends to mention callously, without forethought, or they are downright rude or cruel. The second group, being of the more polite and kind variety of human beings, don't mention it unless I do, or they do so politely and with curiosity, and generally after knowing me for some time.

This...this alone is enough reason to help you understand why I want this fixed. I don't wish to be defined by this one piece of my physicality, nor do I want that feeling of knowing that it is an uncomfortable subject for others around me. That second part? That's why I'm blogging about it.

Meanwhile, I've been quoted here.

Update

2007-04-02T11:53:00.000-07:00

Hi everyone. As always, thanks for coming along for the ride. Unfortunately, I don't have any news to report. Still playing phone tag with the doctor's office. The nature of my work and work environment make it difficult to make calls during the day, and of course, the doctor's office closes at 5:00. So...{sigh}.

Still working in that direction.

Had an interesting exchange with a visitor that was adamant I should try vision therapy instead of surgery. I'd really love if people would share their experiences with both. Not just for my benefit, but also for everyone who is reading and considering surgery. Vision therapy doesn't seem like a viable option for me, not having enough vision to work with. Yet I would be interested to know if it has worked for other readers, or what they know about it. I'll do some digging myself in the meantime.

Still

2007-03-30T05:14:00.000-07:00

Currently still playing phone tag with doctors. I will write more this weekend, and hopefully will have something of interest to report.

Absolutely Argh!

2007-03-26T13:15:00.000-07:00

And the predicted insurance problem begins to rear its ugly head.

My appointment, yeah the one in June, was cancelled, because of a back and forth misunderstanding between my GP's office and the surgeon's office. Boston Children's Hospital needs a referral to book the appointment, but my GP office says they've never had to do a referral for my insurance.

So I called BCH, spoke to the referral department. Yes, they need a referral number to book the appointment.

"Can't I just make the appointment and pay for it if insurance won't cover it?", I asked.

"No, that would be illegal for us to bill you without the referral."

Ok. I called my GP's office and they continued to act confused and fussed over the matter. They didn't even know how to make the referral. I gave them the 800 number for pre-authorization from my insurance card and was told they would work on it in the morning.

Update forthcoming.

Deflated

2007-03-26T12:10:00.000-07:00

I walked into my GP's office at 1:45 today, already on the defense. This would be my first time meeting the doctor, and with my lousy insurance, I was pretty sure I was going to have to fight for my referral to Boston Children's Hospital. I tried to follow a friend's advice to just relax, have faith, and trust. Sure, no problem...just as soon as I had that referral in my fist.

The doctor, a fellow Smith grad, whipped through the physical exam, asked about the referral I was requesting, and not a single eyelash batted in my direction as she wrote furiously on her notes.

"No problem, just give us a call when you have the appointment and we'll put the referral through".

Huh. Not a bad start. I was thrilled! I drove straight home to make my appointment. Of course I didn't expect smooth sailing all the way, but I was pretty high when I called BCH to schedule my appointment with one of their surgeons.

"We can get you in on June 18", the receptionist chirped over the phone.

June? JUNE? How could this woman dare to be so stinking cheery about the news that I would have to sit tight for three months? For just the bloody consultation? Gah. I felt deflated. Three months! Three months before I even get to sit with a surgeon and discuss my options, find out if I'm a candidate, discover if insurance will pay or partially pay, or even make an appointment for surgery.

Now what? I mean, I've waited my entire adult life, so really, what's three months? Three months is a hell of a long time, that's what. When you have been waiting your entire adult life and you decide to finally go for something, three months might as well be three years. I want to be scheduling surgery already. I want to be in recovery yesterday. I want this to be over with, and the last thing I want is to have more time to think.

What Day Is It?

2007-03-23T13:09:00.000-07:00

There isn't much to report, but I wanted to let everyone know that progress is still under way. I recently had a regular eye check up and the good news is that I still retain some peripheral vision and my pupil still responds to light.

I also have an appointment with my GP on Monday to try to get the referral to Boston Children's Hospital. This, and the fight to get insurance to pay, will be the two biggest obstacles so squeeze your eyes shut and think really good thoughts!

I'll post an update after my appointment on Monday!

More Eye Surgery in the Blogosphere

2007-03-20T21:57:00.000-07:00

In my daily quest for information, and other souls going through eye surgery or cotemplating it, I found two other bloggers. Though not the same type of surgery, I thought they still might be of general interest to visitors to meet these two other blogs.

My Visian Experience
and
Ami Chopine (her blog is not devoted to just eye surgery, but she is a clever enough writer to be worth visiting for visiting's sake.)

It's Monday

2007-03-19T21:44:00.000-07:00

Hi all, and thanks for visiting. I've had a lot of visitors from all over the world! I would like to encourage people who are visiting to comment, ask a question, make a suggestion for content, etc. Part of the goal here is to open more dialogue. Although not a forum, I will reply to comments, and if you have a suggestion for content I will do my best to follow through.

Update - I have a call in to one surgeon and my GP. I will be trying to get a referral to Boston Children's Hospital. They have a superb staff, and a team of specialists for adult strabismus treatment. My insurance isn't the best, so I might have to push for this. Wish me luck!

Day Four ~ Contacting Surgeon and New Study

2007-03-16T23:22:00.000-07:00

I cancelled my afternoon appointments today due to a snow storm, and thought it would be a good time to call the eye surgeon I was referred to. Trouble is, apparently the office closed early due to the snow storm too! Now I will have to wait until Monday.

In other news, found this new study. According to my calculations, this means only about a 64% success rate! That's just over half! This doesn't bode well.

Evening Three ~ What Have I Done?

2007-03-15T19:16:00.000-07:00

Spoke to an old friend briefly by email. He asked, "are you really going to do it?". He meant the surgery.

Well, of course I am! I wouldn't have sent out that bulk email. Wouldn't have responded to emails from others who've had surgery, chickened out of surgery, or are still trying to visit the Wizard for a bag of courage. I wouldn't have opened myself up publicly, thrown up a picture of myself right there on the internet and invited perfect strangers into my life. Right?

Right?

Oi. Truth is, I am still really really frightened. I know myself, I know how I have to do things. I won't do anything that isn't a sure thing if I allow myself to think it through. True, I've been thinking about this for years...and consequently have always talked myself out of it, procrastinated, and reasoned it away. Precisely why I've gone "public". That's how I've done all the best things in my life, to just surge forward, all weak spots fully exposed, arms flailing to distract the natives. Usually I land on the other side safely, albeit sometimes bruised and exhausted, but in one piece and all the richer for it.

So, am I going to really go through with surgery? Well I can't back out now, can I?

Evening Two ~ Discovery

2007-03-14T19:20:00.000-07:00

Found this heart wrenching post. Though it is not reflective of my own experience (this man still has vision in both eyes and thus experiences double-vision and other visual problems), there were some resonating points for me. Particularly, "Who will love the boy and the man with the turned eye that I have to carry around inside of me? And by surgically altering my appearance will I actually be rejecting him?"

"...will I actually be rejecting him?" That is powerful and well-put. I share this thought, this struggle. Am I simply caving to vanity and rejecting what fate or God or karma handed me? Was there a lesson I missed and now will swipe under the rug with a couple of snips and sutures?

It remains an often unspoken but simple truth of human nature. We are our physical selves. Not entirely of course. I don't pretend to think it is as simple as that. Yet I dare you to deny its power. I mean in the sense that we are judged, categorized, trapped by, and become internally shaped by our shell. I cannot tell you how many times I have been asked about my eye within the first hour of meeting someone, or how often I've been told later that someone had joked about it, commented on it, found me unattractive (or conversely, attractive because of the in-turn), overlooked my capabilities, or made assumptions about my intelligence upon meeting me.

I forget about it. I honestly do. I don't really even see it when I look in the mirror. So it is always a freshly shocking, and sickening moment when I realize how prevalent it is in the minds of others and how it shapes their first and sometimes lasting impressions of me.

I've never consiously let it get in the way of anything I've wanted. I am lucky to be me, to have defied what has been utterly devastating to others, and to have an "I'll be damned if that's going to get in my way" attitude about getting what I want. On the other hand, having to always break down barriers and prove that I am much more than my physicality can make a person harder than necessary. Two summers ago, I was instructed to allow myself to be vulnerable and to let go of leading with an edge.

Funny. Up to that moment, I thought I was pretty damned vulnerable. But he was right.

Evening Two

2007-03-14T18:39:00.000-07:00

Email and phone have quieted down considerably, so tonight I sit here processing. Many wonderful emails, some just quietly or tenderly supportive, some big "hoorahs", and still others from friends who have shared their own stories of having to sum up the courage to make big changes. Thank you.

This one from a friend and spiritual teacher:

In my heart I sense that your surgery will go quite well and my quiet good wishes go with you.

This human elegance
Like wind
Captured perfectly in stone,
May such lightness be yours
May such confidence blaze.

I spent some time on the internet trying to find other blogs and resources. It's amazing how few there are, though I did find one post from a guy in Washington who was dismayed to find out he couldn't become a surgeon, or a subway operator, or any other of several things that his lack of depth perception made him ineligible for. Me? I've always lamented the fact that my childhood dream to be a jet pilot crashed and burned when I learned of the vision requirements.

Target? What target?

Morning Two

2007-03-14T05:04:00.000-07:00

I had a restless sleep, full of dreams I can't recall in the light of morning. The restlessness seems to be neutral, neither good or bad, so it is likely a response to taking first steps on a new but long thought about path.

A friend sent me this last night (I share this with his permission):

"You are woman!

I’m speechless… awed… I know what a big step this is..

I would like to be there for you.. In any way that would be appropriate.. If you want to be held, listened to, if you want to go for a walk and not talk about it at all…

If money becomes an issue I will be your angel..

You go with much love and support from here!"

and this morning:

"I would be honored to support you. You can use me to drive you and pick you up….

I can only imagine what it must be like to change something so fundamental to your appearance and to your psychological history. I know your courage and I especially know your heart. It is your heart that has always moved me to be your friend."

I am in awe myself. I was berating myself for not expressing enough emotion in the first post. And quite sure that few would understand why this is an emotional issue, how deep the emotion goes, or that it is even deeply emotional at all.

I'll call this friend J. J wasn't the only one who emailed or called last night (more sharing in the next post), and even though I stated that part of my purpose in starting this blog was to generate support, I was startled at how easily tears came when I read these emails, and the need for the love of friends and family that those tears were clearly indicating.

So thank you J. And everyone else who emailed, phoned in, or simply just held me in their thoughts.

Watch Eye Surgery Live

2007-03-13T20:24:00.000-07:00

My NetVibes turned this up tonight, a link to a live webcast of a Horizontal Tenotomy scheduled for March 28th at 12:30 p.m.. While it's not eye muscle surgery, I imagine it would be very informative about eye surgery in general.

Imagine! These surgeons must have some real chutzpah to perform surgery for a live web audience. I've always thought anyone who chooses to be a surgeon must have an unusual amount of equal parts ego and guts. The thought of holding someone else's life in my hands makes me shiver. Being a mother is as close to that as I ever want to get.

Evening One

2007-03-13T19:41:00.000-07:00

Already the emails and phone calls are coming in. People can be really truly wonderful sometimes.

Day One

2007-03-13T15:46:00.000-07:00

I've been living with a "lazy eye" since childhood. The technical term is amblyopia. 20 years ago, an opthamologist recommended to my mother and I that I get corrective surgery. At that time there were significant risks involved, including possible blindness. My mother said, "no way", and I've been sufficiently scared of the surgery ever since. The surgery would have been primarily cosmetic since I had lost vision in the bad eye due to it not being corrected while my vision was developing.

The surgery would still be largely cosmetic, but I do retain some peripheral vision, and there is discomfort that I try to accomodate by tilting my head to one side, then leading to a stiff neck and sometimes headaches.

If you followed my previous blog, you may remember one solitary post about this topic, where I expressed fear and ambivalence about the surgery. That continues to stick with me like a bur on a fuzzy sweater, but today I opened my mouth, asked for a referral, and I now sit here with a surgeon's name on a little white card who I plan to call tomorrow.

This blog will document the process and I intend for it to serve multiple purposes. First, to generate moral and emotional support among family, friends, and yes, even strangers. Second, to keep me on track in moving forward with the process. Third, to educate others about the condition, how it affects those afflicted both physically, and psychosocially. Fourth, to offer guidance and support to others out there who might find their way here. And finally, to fulfill my personal need to write, and the growing urgency to write about even those things that have up until now been impossible for me to write about, even in my own personal journal.

Blessings!