My life with dwarfism

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One afternoon I feel a surge of nostalgia. I reach for old family photo albums and thumb through the contents, as if eager to find hidden clues. My eyes wander eagerly though the photos, but I am fixed on one in particular.

Julie Guiris baby photoIt's a black and white photo of me as a baby. My eyelids are closed against the dim light of dawn. All the muscles in my face are at peace, and I am deep in the throes of slumber. Dark, soft strands of hair adorn my tiny head while my skin is as smooth as a perfect peach.

I can't help notice my small elflike ears and protruding forehead, both symptoms of Seckel Syndrome, an extremely rare inherited disorder characterised by growth delays before birth.

As a baby I had a cranial operation to correct the deformity. A cut was made from one side of my head to the other. This is revealed by a scar which I carefully hide with my hair, and I have downwardly slanting eyelid folds that are slightly droopy. To promote growth I was given hormone growth tablets which I took daily.

I remember my visits to the hospital as a child, where I would be poked and prodded as I went from room to room. The hospital corridors were always cold and sterile with the distinct smell of disinfectant.

The doctor used a hammer to check my reflexes. He would tap my knees to see my leg swing up from the jolt, a sign that my reflexes were good. Then I would be scurried to another room to be measured.

At the age of nine I had my first growth spurt and towered over my peers. I was ecstatic that I wasn't the smallest kid anymore. But that was short lived. I didn't grow much more after that, as my growth was stunted. Ultimately I only grew to four feet three inches.

There are 300 types of dwarfism and the category I come under is 'primordial dwarfism', which means I have proportionate development of my arms and legs.

 

"The term midget was originally taken from the word midge, a small mosquito-like insect. While that is unflattering enough, the term dwarf invoked worse images in my mind."

 

All my family is short so I blend in with them, but stand out to everyone else. I am different enough to elicit stares, especially from children who are both fascinated and puzzled about whether I'm a child or an adult. One time a little girl asked 'Why are you so small? To which I replied 'My mum put in me the washing machine and I shrunk.' 'Really?' she said with her mouth wide open, while I burst into laughter.

But there have been times that weren't so funny, when I have been called a midget in public. These cruel taunts were done by ignorant people who don't understand that as humans we come in different shapes and sizes. I would ignore the offensive slurs, unwilling to let them see how their words cut me inside.

The term midget was originally taken from the word midge, a small mosquito-like insect. While that is unflattering enough, the term dwarf invoked worse images in my mind. I imagined dwarfs being catapulted in the air as circus sideshows, and laughed at like freaks of nature. Short-statured or little person are the preferred terms.

But I don't look at myself as a little person until someone brings it to my attention or I see a little person walk past me, which becomes like a mirror image. I see myself as a person like anyone else, bonded with the thread of humanity, regardless of the differences.

Being unique has its pros, though. It has made me a compassionate person able to see past the differences in people and accept them as they are. And although I am a dwarf by birth I don't identify as that. Being the creative free-spirit that I am I have come to reject any labels put on me. I haven't let my medical condition define me; instead I have created my own identity.

As the writer Helen Keller once said, 'Face your deficiencies and acknowledge them; but do not let them master you. Let them teach you patience, sweetness, insight.'

 


Julie GuirgisJulie Guirgis is an international freelance writer residing in Sydney Australia. Her work has appeared in Madonna, Majellan, Signs of the Times, Significant Living, Vibrant Life, The Edge, Now What?, Writer's Weekly, and more.

 

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Topic tags: Julie Guirgis, dwarfism

 

 

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Existing comments

I liked that penultimate paragraph, Julie. You are a person like anyone else. But you have added insight into difficult circumstances and have chosen compassion. The best choice!
Pam | 22 September 2016


Congratulations Julie, on a wonderfully written post. It holds a lesson for all of us, for we all have our own limitations and problems, and are not always able to adjust to them as gracefully as you seem to have managed.
Robert Liddy | 23 September 2016


Love your writing! Like all the best literature, it is honest, compassionate and funny. Pity more people don't have your gifts. A Leunig cartoon of a man looking at his reflection and telling himself how hateful he is, reminds us that self-loathing creates bigotry, racism, sexism and all the other ignorant and destructive behaviours. We all know perfection is not even a possibility, but being kind to ourselves and others seems rather difficult for some. You have risen above all that. Thank you.
Annabel | 23 September 2016


This is such a beautiful article, thank you Julie. So inspiring and informative! Have you thought of sending it to newspapers or other good magazines? It would open more eyes, indeed..
Jan and John Coleman | 23 September 2016


You shouldn't be labelled or looked down on because you are different, I am glad you didn't let it get to you. You are an example and an inspiration to everyone.
Jennifer Ugafor | 12 February 2017


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