Disfigured...

When I was a child, I was accident prone. During the three years we lived on the Philippine Islands, I broke my arm, knocked out my two front teeth, tore the flesh from my foot, and nearly lost my right eye. But the most serious accident happened when I was simply sitting in a chair.

It was one of those folding camping chairs. I was holding on to the scissor-like frame when it collapsed, snipping off the tip of my middle finger. My parents rushed me to the hospital (again) where a kind physician bandaged my finger using a small mirrored splint. I stared in wonder at my maimed hand as my weary parents drove the familiar route home from the ER. (In the photo I'm sporting the bandaging from the finger amputation and foot injury)

From that point on, I was self-conscious about my finger. Being right-handed made it difficult to hide the disfigurement, no matter how hard I tried. I felt everyone was looking at it, especially other kids. I carried it around in shame.

It wasn’t until the fifth grade that an incident made me come to terms with my unsightly appendage.

Her name was Ruth, and she had the misfortune of being born with only two fingers on her left hand. They weren’t even normal fingers, they were claw-shaped and gnarled. She rarely spoke and moved through life with her hand in her pocket.

Our class was assembling on the playground for that most barbaric of childhood sports, dodge ball. As we fanned out to form the circle, I noticed the other children. They were quickly moving away from Ruth, cutting their eyes and sharing knowing smirks. No one wanted to take Ruth’s hand. She stood staring at the ground, her hand buried deep within her pocket.

Why is it we fear things that are different? Why do disfigurements or deformities cause us such discomfort, when we know those who possess them are no different on the inside? 

Physical deformities have always fascinated me. As someone who specializes in the analysis of the skeleton, I’m most intrigued by skeletal disfigurements. They come in many forms. The process of creating a ‘normal’ skeleton is riddled with complexity; the potential for defect, extensive. Conjoined twins, malformed limbs, bones that are too brittle, those that are too soft - there are a million ways building a skeleton can go haywire. All it takes is a hiccup in the timing, a glitch in the biochemistry, and what you get is skeletal chaos.

The structures within the human body are formed from three distinct collections of cells known as the primary germ layers. The skeleton originates from the middle of these layers, the mesoderm (middle layer). This layer produces bone, cartilage, muscle, and the circulatory systems that support them. The ectoderm, or outer layer, forms skin, hair, nails, and the nervous system, among other things. And the endoderm, or inner layer, forms many of the body’s internal structures, such as the respiratory and digestive tracts and the bladder.

As these layers segregate and develop, they can be thrown off track by genetic abnormalities, illness or injury to the mother, or simply unsuitable conditions within the womb.

I’ve often tried to imagine what it would be like, living with a physical handicap. What does the world look like from the perspective of an achondroplastic dwarf, whose stunted limbs reduce him to a lower plain? What about those with severe scoliosis, where the spine zigzags down the back and the rest of the body is crippled from compensating? And imagine suffering from MOP. Myositis Ossificans Progressiva is one of those rare hereditary diseases that express themselves in frightening ways. Muscles and ligaments slowly ossify, encasing the victim within a bony tomb. As the muscles surrounding the ribcage harden, those controlling the jaw become fixed, and the patient can no longer breathe, no longer eat. There is no cure. There is n0 escape.

In a world where such skeletal disorders exist, it seems a miracle so many of us possess normal, functioning frames. We are the lucky ones.

So let me return to the playground. I stood for a moment, self-consciously staring at my own finger and glancing across the field at Ruth. And then I took a deep breath, strode over, and extended my maimed hand. She slowly withdrew her hand from her pocket and tentatively placed her disfigured hand in mine. And together, we became part of the circle. 

Our hands were a perfect fit. Our disfigurements seemed to complement each other. From that point on, I tried to keep the oddity of my hand in perspective.

So whenever you feel embarrassed about an aspect of your body, keep in mind there is always someone out there facing a greater challenge.

To paraphrase Einstein: “It’s all relative.”

Here's a great read on the subject!