All posts by: Lisa Rivero

I’m not being coy. I just have Duane Syndrome.

The following two photos may look ordinary to most people.

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At Walden Pond, May 5, 2016

But, to me, they are momentous.


May 6, 2016

For the first time since childhood, I can look (very nearly) straight ahead without diplopia (the technical word for double vision). My diplopia was the effect of a congenital condition called Duane Syndrome (DS). Because I had double vision when looking straight ahead, I turned my head to the side so that my eyes worked together better. Compare a similar picture from last year:


Although I was born with DS, the head turn developed gradually, as the muscles in my affected eye pulled the eye further inward (esotropia). The head turn isn’t noticeable in photos from early childhood.


With my cousin David

With my brother (when I was about age 5), innocently channeling my inner Eminem.

With my brother–isn’t he cute?–when I was about age 5

But by my honeymoon, one can begin to see it.



And by my 40s, I was aware of my head turn on a regular basis, not because I felt I was looking sideways (in fact, I didn’t) but because of neck and eye strain. I also noticed that my DS eye was getting weaker as the “good” eye was taking over.


With my father, brothers, and farm cat, August 2015

As DS is not a common condition and I grew up in a rural area, I wasn’t diagnosed until I was in college. Even then, however, surgery wasn’t generally recommended. No surgery can fix the underlying problem—my right eye will never look past center to the right, and those who know me best will continue to know that I prefer to be on the right when we walk or sit together. The goal would be to adjust the muscles that pull the eye inward, to allow the eye to come back to center. However, there is a risk of over- or under-correction, and some people experience permanent double-vision as a result of the surgery—not a risk I was willing to take.

I had always been told that DS was not progressive, so for many years I thought I was imagining that it was getting harder and harder to look straight ahead. Eye specialists also reassured me that DS would not “get worse” as I aged. Then I read an article in Nature indicating that my particular type of DS can progress in—ahem—older patients.

Fast forward past an appointment with a local neuro-opthamologist, a misdiagnosis, and a referral to and second opinion at Massachusetts Eye and Ear, where I learned that surgery techniques for DS have improved greatly in recent years, and that I was a good candidate.

The surgery was on May 4th, and the difference was immediate. My friend who was driving me back to her house squealed with joy when I stared straight at her as I entered the waiting room. My son and husband say it’s the first time ever that they have seen me without a head turn.

There is still a recovery period. Often the surgeon deliberately overcorrects a bit as the eye wants to move back to where it was (and my brain is definitely working to figure out how to deal with the new muscle configuration, especially tracking as I read), but I couldn’t have imagined a better outcome.

Why am I writing about this very personal experience here?

  • Acceptance of self and others. For many years, both before and after I knew I had DS, I felt my “eye problem” was something to be ashamed of. My occasional crossed eyes led to teasing in grade school, awkward photos in high school before I knew to let photographers know how my eyes worked (or didn’t), and unintentional snubbing of people on my bad side whom I didn’t see well or had difficult turning to talk to. In recent years when I was a classroom teacher, students often had no idea to whom I was asking questions if I didn’t use their names. I am grateful that DS is not life-threatening, but even this mild problem has helped me to remember that the inner experiences of physical and mental conditions much more severe than mine can be invisible to others. To walk a mile in another’s shoes can require being open to the possibility that we may have no idea what those shoes look or feel like. DS has, I hope, made me more compassionate with myself and others.
  • The value of hope and second opinions. If a good friend had not suggested I get a second opinion from someone who specializes in adult DS (rather than someone who normally sees the condition in children), I doubt I would have gone through with the surgery. When insurance plans and travel allow for it, getting care where a condition is the norm rather than the exception is ideal. My surgeon and everyone else at Mass Eye and Ear made me feel that I and my eyes were in the best possible hands. As we get older, it is good to keep up with current medical developments for any ongoing health concern and not to give up on improving quality of life.
  • Finally, for those of you who see me in real life, don’t be surprised it I appear less coy these days.

Addendum on May 12, 2016:

In case anyone is interested in learning more about how strabismus surgery for Duane Syndrome type 1 works, I dusted off my technical writing skills in an effort to help myself understand this sentence: “The field of single binocular vision is shifted to include primary position but remains relatively unchanged in size.”

After the surgery an ability to have more of a straight ahead (primary) gaze comes at a slight cost of more limited adduction (looking toward the nose). My understanding is that this is because the range in which I had binocular vision before (and the angle through which I could move my DS eye) is shifted when the muscle is moved. The following diagram isn’t meant to be accurate in terms of angle or anything else—just a way to represent what happens.



Z is for Zzzzzzs

Z-2This post is part of the April A to Z Blog Challenge. For more on my 2016 theme of Private Revolution, see A Is for Ambition. Click here to read all posts in the Private Revolution A to Z Challenge blog series. 

Y Is for Your Failure Resume

I will have to come back to discuss the topic of this (and the next post) in more detail later, but for now, please take a look at this “CV of Failures” from a Princeton professor and the Nature article that inspired it.

“Most of what I try fails, but these failures are often invisible, while the successes are visible. I have noticed that this sometimes gives others the impression that most things work out for me. As a result, they are more likely to attribute their own failures to themselves, rather than the fact that the world is stochastic, applications are crapshoots, and selection committees and referees have bad days. This CV of Failures is an attempt to balance the record and provide some perspective.” Read more

Tina Seelig’s “Failure Resume” creative thinking exercise is similar.

Y-3This post is part of the April A to Z Blog Challenge. For more on my 2016 theme of Private Revolution, see A Is for Ambition. Click here to read all posts in the Private Revolution A to Z Challenge blog series. 

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X is for X (10) eXistential songs that I love

A friend and I were talking about music this week, which has prompting some thought as to why I like some songs and musicians more than others. While I like a good nonsense pop song as much as anyone, much of my favorite music addresses existential questions and the inherent (but freeing) absurdity of existence: Why are we here? How should we live? How do we deal with regret? Shame? Loss? Memory? What does it all mean? These songs not only provide a needed break or background soundtrack; they also are food for the mind and soul.

Below are ten existentialist-themed songs that I love, in no particular order and the first ones that came to mind that I could easily share here:

  • Paul McCartney: “Fool on the Hill”
  • Talking Heads: “Once in a Lifetime”
  • Elvis Costello: “Veronica”
  • Annie Lennox: “Into the West”
  • Queen: “Bohemian Rhapsody”
  • Hamilton Soundtrack: “That Would Be Enough”
  • Prince: “Sign O’ the Times”
  • Tracy Chapman: “Change”
  • Traveling Wilburys: “End of the Line”
  • John Lennon: “Watching the Wheels”

XThis post is part of the April A to Z Blog Challenge. For more on my 2016 theme of Private Revolution, see A Is for Ambition. Click here to read all posts in the Private Revolution A to Z Challenge blog series. 

W Is for Why We Blog

“In journeys at sea that took place before radio or radar or satellites or sonar… [logs] helped navigators surmise where they were and how far they had traveled and how much longer they had to stay at sea.” ~ Andrew Sullivan, “Why I Blog”

Why do we blog?

Andrew Sullivan answered this question in a 2008 Atlantic article in which he began by discussing the original of the word “blog” and its similarity to a ship’s log:

“As you read a log, you have the curious sense of moving backward in time as you move forward in pages—the opposite of a book. As you piece together a narrative that was never intended as one, it seems—and is—more truthful. Logs, in this sense, were a form of human self-correction. They amended for hindsight, for the ways in which human beings order and tidy and construct the story of their lives as they look back on them. Logs require a letting-go of narrative because they do not allow for a knowledge of the ending. So they have plot as well as dramatic irony—the reader will know the ending before the writer did.

Anyone who has blogged his thoughts for an extended time will recognize this world. We bloggers have scant opportunity to collect our thoughts, to wait until events have settled and a clear pattern emerges.” Read more

When I first read Sullivan’s piece several months ago, it changed my relationship to blogging. A blog’s value for the blogger often lies in its inherent imperfection and “letting-go,” in its day to day immediacy.

For example, even in a very busy month like this one, the A to Z Challenge is a way for me to think throughout the day of how a specific letter of the alphabet relates to the rest of my life. However long or short the resulting post (and even if I fall a day behind), it is a record of those thoughts, of where I am at this moment.

WThis post is part of the April A to Z Blog Challenge. For more on my 2016 theme of Private Revolution, see A Is for Ambition. Click here to read all posts in the Private Revolution A to Z Challenge blog series. 

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