Mutant and Proud

What the heck is a Quagga? And while we're at it, what is with all the zebra stripes? They're both good questions, and they're both related. Quagga is the species portion of the binomial nomenclature for zebras. Which is basically a fancy way of saying it's part of the scientific name equus quagga, or plains zebra.

Not too long ago, I was diagnosed with something called Ehlers-Danlos Syndrome or EDS. It is a genetic disorder that caused me to be born without enough collagen. The lack of collagen causes disruption in everything from basic organ function (due to the fact that one of the tissues that forms our organs is collagen) to the way my skin looks. That's right. I'm a zebra.

 Fun Fact: Did you know that no two zebras have the same stripes? They are as individual as our fingerprints.

Fun Fact: Did you know that no two zebras have the same stripes? They are as individual as our fingerprints.

Most people don't get stretch marks unless their skin is....well, stretched. For example, many women gain stretch marks from pregnancy. I, on the other hand, have stretch marks from simply growing up. There was just not enough collagen for my skin to keep up, so to speak. And so, those of us with EDS have become known as zebras.

Other facets of the syndrome include hyper-extension of the joints...the disease is much more prevalent among dancers and contortionists. Our range of motion is simply greater than that of someone without this syndrome. That isn't to say that bending around is good for us. In fact, our lack of stability can (and does) cause dislocations, prolapse, and all sorts of painful experiences.

 The Dance Examination by Edgar Degas. Alas, I had to give up my mundane dance career. Don't worry, I wasn't any good.

The Dance Examination by Edgar Degas. Alas, I had to give up my mundane dance career. Don't worry, I wasn't any good.

Perhaps the most frustrating part of Ehlers-Danlos, however, is its capacity for comorbidity. Which is to say that it causes us to deal with many other diseases/syndromes as well as itself. I have a few forms of dysautonomia, (including POTS) and Mast Cell Activation Disorder (MCAD). All of these glorious acronyms essentially say that I am, in fact, disabled.

The strangest part about admitting this out loud is that I never really thought of myself as such. I mean, sure, I have been dealing with an uncooperative body since about eleven years old. (Although my instability has always caused me to be a bit clumsy. Yes, this syndrome actually causes me to be a klutz. Finally! There's an excuse for it!) Still, I never really thought that this would be a rather large part of my life.

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The truth is, though, the genetic marker has always been there. I have always been different. I have always been a mutation. And so, the only question that was left was: What was I going to do with my mutation? I could very easily just succumb to the anger and disappointment. And that's not to say that some days I don't. But that didn't seem like a very good use of my time. Instead, I thought that I could remember that we are all different in our own ways, we are all probably disabled when we compare ourselves to someone better and stronger, and we can all defy the lot we were given.

I choose to defy the definition. I am not my syndrome, rather, my syndrome is simply part of me. I choose to live life to the fullest, even if my life looks a little different. I choose to be a mutant and proud of it.

Carina Brielle