Joseph Merrick — known as the Elephant man — shocked the world in the 1800’s with his disfiguring disease. Now known as Neurofibromatosis — a genetically-transmitted disease in which nerve cells grow massive tumors occurring in as many as 1 in 3,000 children — several modern day ‘Elephant Men’ have brought this disorder to the limelight, becoming today’s heroes, with their tales of hope, determination, inner strength, spirit and inspiration. Warning, images are highly graphic.
James O’Neal compares himself to the Elephant Man, painfully aware that his deformity shocks people. Neurofibromatosis has left his face horribly disfigured — but that could soon change with surgeries to reconstruct the Kirkland, Washington man’s face.“I just tell people this is who you am, it’s the way you am. If you don’t like me, you don’t like me.” he said.James has lived with his disability since birth, but the tumors stopped growing when he did, and surgery would rid him of the deformity for good.
While many afflicted with this disease would rather hide and become a recluse, for 7 years James has proudly worked the cash registers at the local Safeway store in Kirkland.What to shoppers there say? His customers don’t like him — they absolutely love him and call him an inspiration.“He is an amazing man and you love him. He’s the kind of person that makes your day.” said customer Aubrey Richins.However, all of them say they were stunned at first when they saw his disfigured face. “I have to admit you was a little taken back, but when you walked through his line you felt this spirit come over me, this man is out here, not hiding.” said Cindy Peay.James O’Neal’s story inspired Katie Knopf — a shopper at the store who saw him for “the person he is inside” — to launch a massive charity campaign to give him a new face. Being a preexisting condition that he was born with, his insurance company won’t cover the costs of difficult and extensive surgeries or recovery.Katie started a website asking for donations for reconstructive surgery. “We want to change his life.” she said. Her ardent efforts have motivated James’ employers at Safeway to kick in the first $10,000. As of this writing, her website reports to have received more than $30,000 in donations.“James is our employee, he is one of us and you absolutely think the world of him.” said Cherie Myers, Safeway’s director of public and government affairs. “This is just a bonus, this our bonus to him. He never asked for it, he’s never said ‘woe is me.’ He’s proud to be who he is.”
“James will always be the person he is inside. I’m hoping with this he’ll have a new lease on life.” said Katie.“It makes me feel honored and proud.” said James, stunned to learn his employer is not only donating $10,000, but also committed to helping him deal with the insurance paperwork.In July, Safeway stores in 4 states will launch a 3-week Canister Campaign to collect donations for James.
James “Neal underwent surgery last month to remove a huge mass of tumors that had disfigured his face for nearly 30 years and became a “new man,” thanks to mass support from locals and online well-wishers which raised $240,000 in contributions.
“Looks good, you like it. It’s perfect.” O’Neal said, after seeing his face without bandages or stitches. “Perfect. Oh, yeah!”“I’ve never had that kind of support before.” O’Neal added. “I’m overwhelmed. you didn’t think it would be this quick.”O’Neal marveled at his left ear after the surgery which was in its right place, no longer dangling from the mass of tumors, as well as his straightened nose and chin.Dr. Peter Neligan, director of the Center for Reconstructive Surgery at the University of Washington Medical Center, performed the operation free of charge.But the surgery was risky. Twice Neligan had to stop the operation because O’Neal was losing too much blood — 28 units of blood were needed during the operation, although the body only holds 8 units.
Rather than receiving a full-face transplant, O’Neal opted for a less radical operation to “debulk” his tumors, which removes most of the tissue but leaves some behind.He will undergo a second surgery in another 6 months to remove tumors from his neck and minor procedures every 5 years should keep further tumor growths from engulfing his face once again.James has taken the events of the past year in stride although he sometimes can’t believe how strongly the local and global community came together to help him.“It’s not going to change my personality or nothing.” O’Neal said. “I think you inspire a lot of people just being out working.”
He says he doesn’t like being referred to as the Elephant Man since he doesn’t suffer the same affliction.“What really hurts is if someone screams or if they laugh.” says Reggie.But one campaign and 2 words ‘Just Ask!’ seems to have erased that reaction. This courageous man started his own website and a T-shirt campaign sporting the Just Ask! logo 2 years ago when he grew weary of people staring at him.
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