By Claudia Feldman
September 3, 2014 | Reprinted from the Houston Chronicle
Reggie Bibbs, who suffers from neurofibromatosis, found the courage to face the public and become his own best advocate for the disorder.
For 42 years, Reggie Bibbs struggled to cope with cruel comments about his appearance.
Children and adults slammed doors in his face. A teacher in middle school told him to take off his mask. He was grown and passing through the drive-through lane of a fast-food restaurant when a worker at the window took one look, screamed and threw his food at him.
Bibbs, who shares a home with his mother in southeast Houston, lived the life of a semi-recluse until 2006. That was the year he lost his brother to neurofibromatosis, or NF.
“That’s it,” he told anyone who would listen. “I’m not going to hide anymore.”
Bibbs also has NF, a genetic disorder that has marked him with large tumors on the left side of his head and a left eye that has drifted south to his cheekbone. While it still takes courage to face the public, he is now his own best advocate and an unofficial spokesman for other people with NF.
When Bibbs is out and about, he carries business cards that bear his likeness and the words “Just Ask.” He has T-shirts with the same message and even a converted school bus parked in his mother’s driveway. That, too, bears his likeness and the “Just Ask” logo.
Bibbs says he and his friends have taken the bus to the Texas Medical Center and look forward to road trips around the state and around the country. This weekend the rolling billboard is heading to an NF session at Camp For All in Burton. The idea is to raise awareness, push for early detection and save lives.
As Bibbs’ business card says, NF tumors can cause pain, disfigurement, blindness and death.
When Bibbs was born 50 years ago, he had such small tumors on his mouth, over his left eye and on the heel of his left foot that his mother, Dorothy Bibbs, didn’t worry at first. He cried in pain, however, every time she tried to put his shoes on. At 8 months, the infant and his concerned mother found their way to Houston’s Shriners Hospital for Children. After tests she learned that not only did her youngest have NF but so did she and three more of her six children.
Only Reggie had tumors on his face that grew bigger and stranger with each passing year. In his low, patient voice he says he had some teachers whom he loved and some good times in Scouting.
But overall, Bibbs says, “The kids were scared of me. They’d laugh, point and not want to sit next to me. And that was my school experience.”
Bibbs hop-scotched from regular classes at his neighborhood school, Grissom Elementary, to special education classes at West University Elementary to vocational classes at Pershing Middle School. During those adolescent years, he remembers it was easier to skip lunch than face verbal abuse in the cafeteria. Neither would he wait for the morning school bus outside. Instead, he’d hide in the house until the bus arrived, then make a mad dash and hope no one was looking.
His siblings tried to protect him from bullies, Bibbs says. But, even with a large family, there were more bullies than brothers and sisters.
Instead of high school, Bibbs attended a Goodwill Industries workshop, where he learned to upholster furniture. But he had to quit while doctors tried a number of surgeries to reduce the facial tumors and relieve the pressure on his left leg, which had swollen to twice normal size. Later, Bibbs worked in Goodwill’s shipping department, where he kept track of office materials and janitorial supplies. But that job was short-lived, too, because of recurring problems with his leg.
For a few years in the early ’90s, Bibbs worked as an employee and volunteer at the Houston chapter of the Texas NF Foundation. During fundraising campaigns, he met philanthropist Carolyn Farb, Dallas Cowboys quarterback Roger Staubach, then-Gov. George W. Bush and Hollywood photographer Greg Gorman. When the foundation’s focus shifted from outreach and education to research, however, the office closed, and Bibbs lost his gig.
“It was sad,” remembers friend and advertising executive Lou Congelio, who created some memorable ad campaigns with Bibbs. “Reggie started regressing. He really didn’t have anything to do.”
Hero in the NF world
Bibbs forgot his own problems when his brother came to him in the summer of 2005 and showed him the malignant tumor on his leg. Bibbs took him to see NF expert Dr. John Slopis, who had been treating the family for years. Slopis, at the University of Texas M.D. Anderson Cancer Center, says only 10 percent of NF tumors become cancerous, but all have to be monitored. Any one of them can take a dangerous turn.
After his brother’s death, Bibbs realized he did have a purpose in life, and that was to educate the public about NF. If, along the way, he could drop a few hints about the importance of self-acceptance and the golden rule, so much the better.
Congelio had the idea for the T-shirts, the business cards and the tour bus. He also took Bibbs to his first Astros game and showed him that the props and a new attitude could really help. Men Bibbs had never met were shaking his hand. Women he’d never met were kissing him on the cheek.
“Everyone’s just been so nice,” Bibbs says. “What we do is awareness, awareness, awareness.”
Tumors are the hallmark of the disorder which affects 1 in 3,000 Americans. All ethnic groups and both sexes are affected equally by NF, and there is no cure.
Slopis, the NF doctor, and Farb, the philanthropist, describe Bibbs as a hero in the NF world.
Farb has helped raise money for the cause for years, and she helped establish the adult NF clinic at Anderson.
“It’s a very painful disease,” she says, “and it’s like trying to put out a fire. Your operate on one tumor, and it comes back with a vengeance.”
Bibbs monitors the steady progress in NF research and treatment, but he no longer believes just one more operation, just one more procedure, will help him.
“Every surgery is painful, and I am done,” Bibbs says. “I’m OK with who I am and how I look.”