My Story: Living With an Optic Nerve Coloboma

I’ve only been able to see out of one eye all my life.

I was born legally blind in my right eye. As a kid, I knew something was different about me. It was most apparent when I would go to the doctor and they would ask me what I could see in my right eye and it wasn’t nearly the same as my left eye. It was also apparent when things got tossed my way and I couldn’t catch the same way other people could.

Those eye doctor visits were something of a hassle, especially as I got older, since it was hard to describe to people what my sight was like in that eye. In some ways, it would have been easier if I had been totally blind in that eye. It was liking looking through a heavily static image from the old days of analog TV, with some light and some perception but not a lot, and no peripheral vision.

I generally learned to cope. I could still do most things other people could. I found ways to compensate with regard to depth perception for things like driving. I did sports and activities that didn’t involve catching things.

But one thing that happened as I got older is that I wanted to know more about my eye. What was it called? What caused it? If I were born today, would they be able to treat it?

A turning point for me happened during an otherwise-routine eye exam in my 30s. A young, enthusiastic optometrist was fascinated by my right eye. She performed a digital image of the eye, examined it closely, and nosed around to see if she could get me a concrete diagnosis. “It is either morning glory syndrome or an optic nerve coloboma,” she said. An ophthalmologist later confirmed to me that it was the latter.

There was something powerful in those words. I had visited various optometrists and ophthalmologists through my life and none of them had ever given my eye condition a name. One very good ophthalmologist told me it didn’t really matter what it was called. I explained to him why, to me, it did — it took something that had been a part of my life and gave me a way to begin to understand it. Because of that diagnosis, I was able to look it up more online and start asking different questions.

I learned some other things, too. I learned that it was probably a fluke in pregnancy. (My mom cried when I relayed the judgement of a specialist that it wasn’t her fault.) I also learned that there was nothing available now to fix what I have. That was sort of sad, but at least it didn’t mean I was born just a little too early.

But I’ve learned to count my blessings. I have a good eye (that has pretty good vision) and I’ve been able to live a mostly normal life. And I’m otherwise healthy. And it also gives me a little more empathy toward people with physical limitations.

And a bit of inspiration to write this blog.