By Kristin Edwards
Staff Reporter
May 08, 2008 11:37 pm
—
For lack of a better word, 25-year-old Huntsville resident Natalie Duesing is just remarkable.
An avid painter, music lover and poet, Duesing possesses unfaltering belief in God, a strong will and a completely open mind.
She even has a crush on George Clooney, and jokes about going on a date with him in Paris.
“I picture our date including a candlelight dinner and a nice walk — maybe even a goodnight kiss,” she said.
Based on her personality, Duesing is a perfectly normal person, and it seems hard to imagine that she could have been kicked, bullied and made fun of from the time she was in elementary school, and even to this day.
However, when she was two days old, Duesing was diagnosed with Neurofibromatosis type I, also known as von Recklinghausen syndrome, a genetic disease which causes neurologic and dermatologic lesions.
That diagnosis, brought on by a genetic mutation, has been the cause of almost 20 surgeries, verbal and physical abuse and a life filled with trying experiences.
“Since I was little, I’ve had close to 20 surgeries, including brain surgery for a type of tumor I have called Plexiform neurofibroma,” she said. “I’ve had skin grafts for my legs, muscle grafts for my back, and lots of reconstructive plastic surgery on my face.
“I was actually born with a right eye, but it was being pushed out of the socket, so trying to save it didn’t work.”
The surgeries — which Duesing said lasted between 12 and 14 hours each — have left her with full use of her left eye and the ability to speak normally.
However, her appearance has made her the object of cruel jokes for as long as she can remember.
“School was awful,” she said. “I was bullied, made fun of, tripped and kicked. Sometimes, I even came home with a head full of spitballs, but that wasn’t as bad as the ways I was picked on emotionally.
“When you’re 13 years old, looks are everything, and I had girls come around the corner in front of me, scream and then run the other way.”
Just because Duesing has grown up, and even come to forgive those who picked on her, doesn’t mean the people around her have matured so completely.
“The other day, I was at Wal-Mart waiting for a ride, and a college-aged girl walked up to me, took a picture of me with her cell phone, then laughed and walked away,” she said. “Another guy, who was probably in his 40s or 50s, had followed me through the store, ducking behind aisles like I couldn’t see him.
“Honestly, I feel sorry for people like that, because it shows how uneducated they are and that they obviously weren’t raised right.”
Even someone who can learn to forgive ignorance and just brush off maltreatment has weak moments, Duesing said.
“I do get depressed and uncomfortable at times, and there have been some very dark moments in my life when I have wanted to give up,” she said. “It is hard to feel so alone, but my answer to living is God.
“I have faith in God, and I especially cling to one Bible verse in the book of Isaiah that reminds me that God is with me.”
Duesing’s poetry writing has been one of the main ways she has dealt with the difficult parts of her life and her disease.
“I started writing poetry when I was around 13 or 14, and I love it because I can express myself better than others can even understand,” she said. “It lets my feelings out, and to me, it feels like a form of relaxation.
“Where other people would come home and take a bath, writing poetry for me is very freeing, and it makes me feel better.”
For herself, Duesing said all she really wants from people, from the members of the community she has been a part of for 25 years, is simple acknowledgment.
“Although I am very nervous about opening myself up like this, I hope that people will see that I am a human being who needs human contact, acknowledgment, acceptance and — maybe, someday — a friend,” she said. “I would love it if people would acknowledge me when they se me, say ‘Hello,’ and maybe even have a conversation with me about the weather or anything else.
“I don’t want to be rejected or ignored — I want to feel like a member of this community.”
From her story, Duesing said she really wants people to understand what it’s like to be different, and for the public to know that all people want is to be treated with respect.
“I don’t want this to be just about me,” she said. “Most of all, I want people to think about all of the other people out there who are different and don’t fit in because of the way they look, talk or believe. I want to help educate people, and I want to help them understand that everyone needs to feel accepted.
“Look around you for those who feel left out or alone, and reach out to them. It would mean so much.”
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