I don’t remember much of life before age four, but I’m told I was normal. A gregarious, blond-haired princess. Before my life inexorably changed.
Back in those days, my family lived in a small southern town. The sun beat down ten months a year it seemed, baking the asphalt and brick, forcing us to either sweat or go back indoors.
On my fourth birthday, extended family, neighbors and friends gathered in Shelter #2 at Greenway Park. Not much to look at, the park held the town’s affection as a place where kids could run around and get dirty, and adults could lounge under shady trees and converse about life and love.
An aunt of mine saw me slip off a large, fallen log. But it wasn’t my bleeding leg she stared at. Her gaze lingered on my right cheek, a look of terror washing over her, soon corrected by a half smile. I will never forget that flash of horror and pity I saw in her eyes.
“Darlene, honey, are you all right? My, you’ve got two big boo-boo’s. Let me carry you to your momma.”
“Aunt Thelma, why do you hate my momma? God tells us to love.” I cried then, realizing the truth of my words.
“Child, I don’t know what you’re goin’ on about. Your momma is my sister and I love her.” Aunt Thelma looked like she had been struck by lightning, in spite of her consoling words. I found out later that Aunt Thelma couldn’t have children and was bitterly jealous. Momma just told me to pray for her.
The party ended with my unexpected emergency room trip. The doctor stitched up my leg, but my face baffled him. He had never seen a growth like mine. Tests proved negative for cancer, but there were many possibilities and no definite answers.
It didn’t bother me at first. After all, what does a four-year-old know of beauty, of how an ugly mass would mar her face? I nearly forgot about it. Until the next incident.
No seven-year-old girl should know what’s in another person’s thoughts. But I did. One day my best friend Edie and her older sister played with me in my back yard. We had a dilapidated swing set on which we climbed to see into other people’s yards. I hung upside down on one of the bars when it happened.
“Tamara.” I smiled as I looked at her. “Please don’t kill yourself. It’s not so bad and God loves you.”
“I’m telling!” Edie screamed and ran home, with Tamara close behind.
I felt a knot swell on top of my head. Scared, I went inside and showed Momma. It again confounded the doctors and depressed me. When the doctors later removed the masses, they just grew back. So they stopped trying. Momma said I had a gift, one I couldn’t hide, just like the growths on my face and head. I understand that only a little at the time.
As I grew up, I had no real friends. Word gets around in a small town, and most were afraid I would divulge one of their secrets. They called me “Elephant Girl” after the famous “Elephant Man,” though I didn’t look like him. From the neck down, one could mistake me as normal. My parents comforted me well, enabling me to bear the gift-curse. The teenage years were the hardest, and yet I somehow plowed on, praying God would make something good of my life or take it.
My revelations came more often, and my visage became more repulsive. The more beautiful my relationship to God, and the more I spoke as a result, the uglier I became outwardly. Sometimes I wished I could remain silent, but I knew that would bring more pain to my soul than disfiguration to my body.
I am now 28 years old, single, and somewhat disabled. Mother walks me to the mailbox daily, as my vision is impaired. Over the years I have received many a letter or card thanking me. One was an invitation to Tamara’s baby shower. She didn’t kill herself, but got help, and is now happily married. Aunt Thelma helps infertile couples and champions adoption—her adopted daughter is a joy.
Do I worry about tomorrow or a painful early death? No. God has made it clear that Christ shines through me. He has given me beauty for ashes, gladness for mourning. And that is enough.
Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day. For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all. So we fix our eyes not on what is seen, but on what is unseen. For what is seen is temporary, but what is unseen is eternal. - 2 Corinthians 4:16-18 (NIV)
Footnote: Darlene’s illness was fictional, but loosely related to Proteus Syndrome, a rare congenital disorder that causes skin overgrowth and atypical bone development, and is often accompanied by tumors on over half the body.
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