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

The following two photos may look ordinary to most people.

FullSizeRender (2)
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.



12 thoughts on “I’m not being coy. I just have Duane Syndrome.

    • Marianne, I can’t thank you enough for the role you played! It’s a relatively minor change that nonetheless already has an important impact. I’m so much less tired when I read, and my neck strain disappeared almost immediately. Since I was told that the head turn would only progress, I feel good I did this now rather than waiting any longer.

    • Brenda, you are always so very gracious! Thank you very much. I hope your Mother’s Day was wonderful. I just recommended your work to someone who is doing work on Saartje Baartman.

  1. Thank you this sensitive, articulate essay about your struggle with Duane Syndrome. So happy for your improved outcome. Take care and Happy Mother’s Day. Lori

    • Joy, thank you very much. It was interesting how my brain was confused for a few days after the surgery, as I felt I was looking as I always had but my head was in a different position. Fascinating.

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