My bilateral iris coloboma makes my pupils appear keyhole shaped, but it does not give me X-ray vision superpowers. Except the other kids in my first grade class didn’t know that. So that’s what I told them.
The idea first came to me at recess when a kid I didn’t know from a different first grade class ducked down to peer through the thick glass of my aviator-style glasses (with transition lenses, because I was obviously very cool). I don’t remember that boy’s name or anything about him, but I do remember the way he looked at my eyes instead of in them, an experience I have come to know well over the course of my life.
“Why do your eyes look like that?” he asked me.
He didn’t lead with “What’s your name?” or “My name is Mouth McBreather. What’s yours?” or “Obliviousness runs in my family. Can I ask you a question?” Nope. Nothing of the sort, just: “Why do your eyes look like that?” as if I had the answer to that sort of dumb question. I didn’t. I could explain my coloboma, but I couldn’t explain why I had it. By that time, I had explained my coloboma so many times I decided to get more creative because the truth was a lot of work and a waste of breath. The new answer came out of my mouth before it even introduced itself to my brain.
“Because I have X-ray vision.”
“What? No, you don’t.”
“Yes, I do.”
“What color is my underwear then?” he asked with indignation.
I took a guess — white — because he seemed like a “tighty-whitey” kind of kid.
His face turned bright red and he looked me up and down like he wanted to say, “Lucky guess,” but he wasn’t so sure.
The bell rang and we went our separate ways, but by the next day all my peers were accosting me with questions about the color of their undergarments. That was a lot more fun than other kids calling me “crazy eyes” during middle school. It was more fun than trying to squint my way through a soccer game under the oppressively bright sun. More fun than standing on a stage for the Christmas choir staring out at a sea of blurry faces. Most kids waved to their parents. I just had to trust mine were there.
My coloboma extends to my retinas which means my peripheral vision is impacted. The coloboma of my iris makes it more difficult for my eyes to dilate which makes me insufferably light sensitive. My eye doctor, Dr. McMann, said my extreme nearsightedness isn’t connected to my coloboma, but I suspect otherwise. At the very least the combination of all those factors didn’t do me any favors. However, Dr. McMann is the reason I see 20/25 (with contacts) today. But that didn’t happen overnight. It took years.
When I was a kid, I drove to and from Chicago at least three times a year to visit my eye doctor. Those trips were laden with my dad’s esoteric music choices, long talks, snail-pace traffic, and an endless stream of, “One… or two? Again, one… or two? Okay. Three… or four? Three… or four?” But those trips always ended with the fattest juiciest Italian beef sandwiches from Big Al’s on Taylor before we drove home. I cherish those memories now, that time with my dad. I owe everything to him and Dr. McMann. They both worked tirelessly to give me the vision I have today.
That work started with glasses. Yes, the big aforementioned aviator-style glasses with transition lenses which helped with my light sensitivity but didn’t quite make soccer playable. Basketball was a toss up. And, because I struggled with depth perception, baseball was out of the question too. Just the thought of that white ball against that bright blue sky made my eyes water. Not that I’d be able to see a pop-up in the first place. And golf, my dad’s favorite sport? Forget about it.
So, I spent much of my time reading.
I devoured the Harry Potter books, Peg Kehret’s bestsellers, the oeuvre of Christopher Pike and R.L. Stine, before graduating to Steinbeck and McCarthy and The Lord of the Rings and everything else I could get my hands on. The reading never stopped. I only took breaks to eat between books.
Eventually, that love of reading inspired me to write, so that’s what I started doing. Because in my imagination, I could see just fine. I would log onto the family computer and write stories about adventure and about romance and the heroic actions of a little boy in aviator-style glasses. At one point, I even wrote a screenplay for a fourth The Lord of the Rings movie that I sent directly to Peter Jackson whose legal department sent me a very formal rejection letter. Something about copyright infringement? In retrospect, I’m not sure they knew I was eight.
Time went on, and I read and wrote my way into puberty while I continued to answer questions about my eyes, both to strangers and to my eye doctor. And then, a breakthrough: prosthetic contact lenses aka colored contacts.
“The idea is that the tinted lens will filter out some of the light,” Dr. McMann told my dad, pointing a steady finger at a fake blue iris on a soft contact lens.
I popped them in.
And they did.
After I put those contacts in, three things happened: 1) I realized light had been streaming across my field of vision in an abnormal way my entire life. Yeah, seems weird to realize that at the age of 13, but up until that point it’s all I had known. A fluorescent light that would normally send a smear of sharp rays of light across the entire room was now just a long cylindrical bulb with a halo of light around it. This applied to stoplights, headlights, streetlights, lamps, etc. The world became clearer. And, 2), I didn’t need to squint. But perhaps the most important thing to me at the beginning of my teenage years: 3) my eyes looked… normal. Mostly.
I entered high school with my eyes hidden behind little blue donut-shaped masks. Of course, they didn’t look perfect, but I had mastered the art of brief enough eye contact to evade accusation. For the first time, I could live the majority of my day like everyone else. But every once in a while, someone who paid enough attention to the details of my face would notice. While I still didn’t have X-ray vision, it felt like some other people did, and, blinded by the arrogance of their superpower, they would ask, “Are you wearing colored contacts?”
At first, I told the truth because I was terrified of coming off as fake or superficial. This meant I needed to explain everything: “Yeah, it’s because I have something called bilateral coloboma which makes my eyes super light sensitive and the color on the contact helps block out some of the light— What? Oh, it means my pupils kind of look like keyholes. Huh? Um, I mean, I can’t just take out my contacts. I can move it to the side, I guess. Yeah, here… Yeah. I was born with it…” The explanation didn’t end there. It never did. And the interrogator always regarded me with a subtle hint of suspicion forever after. So eventually it became easier to…
“Are you wearing colored contacts?”
“No.”
… lie.
I wore those colored contacts throughout high school. And college. And the rest of my twenties. For a good portion of that time, my love for reading and writing took a backseat to all the other things I found myself now able to do in new ways. Though, I never gave either up. I majored in English and landed myself a job teaching at the very high school I attended. My vision was great and my eyes looked normal and everything was just fine and dandy in that area of my life. So much so that I didn’t give it much thought at all anymore.
Until, one day, my eyes started turning red. They got scratchy. And itchy. It got worse. It looked worse. So I returned to Dr. McMann, whose hand now shook with the beginning stages of Parkinson’s.
“Well, this was always a possibility,” he said, eyes full of remorse for the technology of our time. “Your eyes are no longer tolerating the tinted lenses.”
“Okay.”
“Unfortunately, the only contact lens material that can be tinted is not oxygen permeable, and your eyes have essentially said, ‘Enough is enough,’ and they need to breathe.”
“So what’s that mean for me?”
“Well, you need contacts that can breathe. You’ll still be able to see as well as you have. But we can’t tint them so the light sensitivity will be an issue.”
A few months later I was wearing lenses that did nothing to mask the true appearance of my eyes. The worst part of that process was driving to and from the eye doctor by myself. No dad. I had so many questions for him. A lot of the context of my coloboma was kept from me at a young age because it wasn’t important to a little kid. Nor could I have understood any of it at the time. But, now, it felt like I was learning something about myself that had always been a part of me. It was tough. Because a lot of the answers to my questions died with my dad six months earlier.
The streaking light returned, something I had almost entirely forgotten about. And the questions about my eyes returned too. Sometimes I can tell when people notice my coloboma, even when they don’t say anything. Sometimes people compliment them. Largely, it seems, people find my eyes to be “unique” and “cool,” which is nice. But it was strange to have some friends see me for the first time, never having known about my coloboma because, well, it never came up. Yet, more than anything, the experience of being reborn into my coloboma at the age of 30 gave me the gift of perspective.
First and foremost, I have settled into the comfort of myself. I have relished in the experience of having my eyes back, not the fake ones. Despite whatever insecurity I may feel about them, they are my eyes and I love them. Because for all of their defects, I still use them to see a very beautiful world, even if I can’t see it as well as others sometimes.
Nowadays, I care far more about my ability to see than I do about how others see me. This notion is something I hope to impart on my children, on my students, and, one day, on people I can’t currently reach with the scope of my job and personal life. Because this rebirth into my coloboma has done something incredible for me. It has rekindled my tenacious passion for the art of reading and the art of writing.
I am inspired now more than ever to tell stories to the vast sea of beautiful people who share that passion. And I don’t just want to include myself in those stories. I want to include my eyes and other people like me and my insecurity and my grief and my love and all of the things that have given my life so much substance. And I hope someday I can give the gift of a story to a kid like me with coloboma so that he might see himself in a way I never could.
I feel a renewed connection not just to those who share the experience of coloboma but to my peers of the visually disabled and my peers with visible disabilities. Both share some similarities. We navigate the world with our own unique personal experiences — stories we don’t often see in the books we read or the shows we watch. I have found we can always bond with one another over our little Venn diagrams of life.
But the stares of the ignorant land differently when your visible abnormality is located in the place people are supposed to be looking. Which led me to an unexpected discovery this time around. I discovered that I was right all along. I do have X-ray vision. As it turns out, I can see right through anyone who looks at my eyes instead of in them. As a result, I have collected an abundance of wonderful people in my most beautiful life.
And my life is all the better for it.
