Deformity and Disfigurement

I’m a hunchback. Really. As a two-year-old, I was already showing a hint of the deformity, which has gotten much worse over the years.

But, I didn’t always think of the severe curve in my upper spine as an abnormality – I don’t think I ever really thought of it as an “it” at all. In my mind, in my consciousness of who I am, there has never been a separation between me and my disease. My body is my body and I am I.

I remember when I first became pointedly aware of my hump. I was 19 and was getting an x-ray to make sure that my chest congestion wasn’t pneumonia. Two technicians were positioning me on the table and one said to the other, indicating my back, “Watch out for the deformity.” On hearing this, I was puzzled as to what she was referring to – “I have a deformity?” I remember thinking. And then, of course, I knew exactly what she was talking about, and everything clicked into a new self-image – yes, of course, my spine is curved and crooked. It’s deformed. I have a deformity. I am deformed.

You may think that this made me feel bad about myself. But, it didn’t. Whatever one chooses to call my scoliosis doesn’t change the fact of my scoliosis or its severity. Actually, with the new, concrete realization that I am deformed, I began a new, more confident sense of self – but not right away. Although I didn’t think less of myself value wise, I did become very self-conscious about my crooked back.

When the Disney film, The Hunchback of Notre Dame, was released in theaters, my sister, mother, great aunt, and I planned on going, because we went to every new animated movie at that time, as a treat for my great-aunt Gini. But, I had serious reservations about going to the movie theater for this one. I really, really didn’t want little kids to look at me and point, seeing me as a live version of Quasimodo. “Look mom, a real hunchback!”

You know, I don’t clearly remember whether we even decided to go or not. If we didn’t go, it wasn’t because of my overly self-conscious dread. Although… Although I could have simply said that I didn’t physically feel up to going. No questions would have been asked.

Almost 20 years later, I’m truly not bothered if people stare at me (it’s usually a kind of morbid curiosity) or if little kids point at me and say things that embarrass their parents. And there is so much more than my hunchback to look at. There’s the wheelchair, of course; my squat torso and frail thinness; and let’s not forget my head permanently flopped over onto my left shoulder. My head pretty much rests on my hump, actually. I can feel the vertebrae pressing into the back of my skull right now. In a way, this covers up the fact that I have a hunchback. Instead, I am just obviously crippled and crumpled. Deformed. Most people stop seeing this so blatantly, every time they look at me, once they have known me for a while. I’m told that my personality takes over and what people see when they look at me are my smile and my expressive eyes. Even if my eyes are continually tilted at a 35° angle off of the horizon and I can’t move my head.

So, what is the new confidence that I started to gain when I identified myself as deformed? It’s a kind of, “Here I am. All of me. Vulnerable and unashamed.” Life isn’t always pretty. Life is so very far from perfect. And whatever limitations, deformities, disfigurements, poverties, or setbacks that you out there may have, through no fault of your own, you are supposed to be here. You are loved into being and celebrated on high. You are a human being – and that is always beautiful, no matter how wounded, twisted, weak, or scarred you may be in body. Physical ugliness doesn’t have to make an ugly heart or an ugly mind. The most wonderful gifts can come in the crudest or most battered packages.

People may point and stare. People may not be able to hide their shock or even their repulsion. I’ve seen it in people’s eyes when they look at me. The nose wrinkles slightly and they want to look away, but can’t. But, I’m not going to hide. Yes, I understand it might be a little gross to sit near me in a restaurant and watch my father feed me when he is less than successful at getting the whole forkful into my mouth. But, look, keep looking. I roll my eyes at him and then give him a closed-mouth smile. And, after I swallow, I continue to engage in lively conversation with my table mates. And, though, at first, you may look at me with an instinct of disdain or with morbid curiosity, you will soon see me as a blessed person, who is loved and gratefully cared for by her family, who is able to accept who she is, disability, hunchback, and all, and who lives life with the sense of gratitude and joy with which it is meant to be lived. And you will smile at me. And you will open doors for me. And you will be so happy to exchange a few words with me. And, sometimes, you will share the fact that I have inspired you.

None of this will make my body less deformed or my debilitating disease less painful to live with. You won’t change me. But, I might change you. For I’ve already learned what you’re being taught, now, through me.

(Keep the faith, my dear aunt! The beauty is not on the surface of the canvas – it is in the heart of the artist and the beholder. And you are always beautiful!)

© 2015 Christina Chase