Why I Waited 22 Years to Write About My Deformity


side-by-side

This has never been a story I wanted to elaborate on. Sure, it’s something I’ll answer questions about, something I’ll share with people. I mean, it’s a major part of my life, so I can’t just ignore it. Not like I used to think I could. And throughout my journey, people have been asking me to write. Write about my experiences, what I’ve been through, what I still need to go through. Honestly, if I were to write down all the intricate details, I’d be writing an entire book. Maybe eventually I will.

But if I were to have written this in the past like people have suggested I do, it would just simply be incomplete. Because the journey was incomplete. I know that right now I’m not 100 percent finished, but I do know I’m at the 95-percent mark. And now? Now I think I can finally do it.

For those who don’t know, I was born with a cleft lip and palate. It’s when your lip and palate (roof of your mouth) don’t form together completely before you’re born. So I had this split that ran from the inside of the left side of my nose, through my lip and through the roof of my mouth. Of course fixing this issue requires many, many surgeries — surgeries some people have told me will make me look “normal.”

To me, the word “normal” has always been one of those achievements put up on a pedestal that I could never hope to reach. Because I knew that no matter how many surgeries I’d have, no matter how many speech therapy sessions I’d go to, no matter how many times I went in and out of Children’s Hospital, I’d still be cleft. I’d still look cleft. I’d still sound cleft. It’d just always be there.

In my mind, it was a curse.

Of course, growing up with a deformity isn’t easy. I could go into all the conversations and all the jokes and moments where people made fun of me for it, but that won’t do me or you any good. Kids can be mean. People can be rude. That’s just the way it is. And I’ve accepted that. Not everyone is but there will always be someone who just doesn’t understand when you shouldn’t say certain things to certain people. I can’t change that too much, either. I can’t just pull those people aside and lecture them about decency. Nor do I really want to.

Through my years of learning what it means to have a cleft, I’ve realized one crucial thing: I have to change my mind about myself. Because in my mind, I’m deformed. In my mind, I’m not “normal,” I will never be “normal.” So with that, I’ve automatically placed myself in this lower level of humanity below people who are “normal.” There are days even now that I still wish it’d all just go away. A lot of days, I don’t want to do it anymore.

People always ask me to tell the world what it’s like to have a cleft, and I want to give this great, big heartwarming story about how everything is an eye-opening experience and just so incredible. But that’d be a lie. At least it would be for me. Because nothing about it was really all that awesome.

That’s why I could never write this then. That’s why I knew I had to wait. Because now I see it. Now that everything is all over (well, mostly), I get it. Having a cleft can be a lot of terrible things, it really can. But it can also be one of the most life-changing things you can go through. And it’s something rare – something not everyone can go through.

I’ve had the opportunity to see what a real, huge outward transformation looks like. Every surgery brought a change to something on my face, whether it be small like putting in a fake tooth to something massive like pulling my entire jaw forward and getting rid of my awkward underbite. And with that, I’ve had the opportunity to change my mind.

I don’t see “normal” as this unreachable dream that can’t ever happen for me. For me, having a cleft is normal. Normal is something that changes from person to person. Just like beauty. I’ve learned through this entire process, through all the comments and self-loathing, that beauty isn’t something you can compare. It’s something that differs from person to person. There isn’t a scale or a rubric for it. The same goes for this whole “normal” thing.

That’s something I wish I’d learned earlier in my life. Something I wish I’d grasped onto. Because I know that I’ve been told this before, but sometimes it takes reaching the end of what seems like a never-ending journey for it to make sense.

I know I’m still going to have days when I hate my cleft. There are going to be days when I wish I could draw a line down my face and have both sides look the same. But that’s never gonna happen. That’s just not me. And I’m not going to be sitting here day after day in tears that I’m not good enough just because I’m not exactly like everyone else is.

There’s beauty in seeing beyond what people think is standard. There’s beauty in looking at all the things in life you’ve been through — whether they be good or bad — and at the end of the day realizing if you hadn’t gone through those things, you’d still be the same person you were years ago.

If I’d written this even a year ago when someone had told me to, this would have been an entire story about how having a cleft absolutely sucks. Now? Yeah, OK, it can be annoying and terrible at times, but in the long run, if I hadn’t gone through any of this at all, I don’t think I’d see life the same way. I can’t say how I’d be different because that’s not my life to tell. But I can say that now that this is done, I wouldn’t trade it for the world.

My outward transformation has been remarkable. But it’s nothing compared to what happened on the inside.

This post originally appeared on The Cleft Diaries.

Want to celebrate the human spirit? Like us on Facebook.

And sign up for what we hope will be your favorite thing to read at night.


Find this story helpful? Share it with someone you care about.


Related to Other

My 4-Year-Old’s Drawing Let Me Know Exactly How She Feels About Her Diabetes

While the kids eat dinner I sort through the pile of papers they bring home from preschool each day. Sheet after sheet of drawings, letters, numbers… indicators of their expanding knowledge and growing imaginations. An intricately drawn image of Batman taking a nap while Daniel Tiger builds a snowman. And that large green square? That’s [...]

A Letter to My Daughter With a Rare Genetic Disease

From the moment I first saw your sweet face, I knew that my description and idea of love would never be the same. I loved you while you were in my tummy, but no one prepared me for this new love that would overcome my mind and body when they placed you in my arms. [...]

How My Troubling Sonogram Became a Remarkable Blessing

The sonogram tech’s face fell. “I’ll just get the doctor,” she said in an artificial lilt that didn’t fit her somber expression. She left the room a little too fast. I knew right away something was wrong. What did she see in that blurry picture on the monitor? To me, the amorphous yet recognizable image of a [...]

How I’m Learning to Accept I’m Not the Dad I Expected To Be

I always expected I would have children during my lifetime. When I found out I was going to be a dad, it seemed logical, the natural order of things. There was no panic or apprehension. I was mentally prepared, and I knew exactly the kind of father I was going to be. I would be strong, [...]