Lamise ElBetar was eating at Dunkin’ Donuts in Boston's airport this year on her connection back to Akron after a trip home to Egypt.
She looked up and saw a stranger using a cellphone to take a video of her eating.
The University of Akron graduate student is used to the stares or quick glances, but usually she ignores them unless they make her feel like a “circus act.”
Lamise was born with a condition called a venous malformation, which has continued to grow all her life and causes the lower right side of her face and the majority of her lips to protrude.
“I looked at her and turned away and gave her my back,” said Lamise, 33.
The woman moved in front of Lamise and continued to record.
Lamise responded by pulling out her own cellphone and recording the woman recording her. That got the woman to stop.
Another time, a woman pulled up alongside Lamise as she was walking in Akron and tried to take a photo of her from her car. It was raining, so Lamise took her umbrella and blocked the woman’s vision. The woman “got furious and did a U-turn.”
“I’m a pretty open person,” Lamise said. “If you stop me and try to ask me, if I feel you are asking out of interest and caring, I will tell you anything.
“I don’t like the idea of making me feel like I’m weird or awkward,” Lamise said.
Still, Lamise knows it is hard not to notice what she calls her “facial difference.” She prefers referring to her condition by its medical term, a venous malformation, or "facial difference" instead of the stigmatizing word "deformity."
Doctors describe her condition as a “jungle” of intertwined veins and muscle. The venous malformation was about the size of a pimple at birth but has continued to grow.
The family now knows the condition is much more treatable when patients are young because the malformation grows with the addition of hormones and stress. But doctors in Egypt initially told her parents to wait until Lamise was in her teens to seek treatment.
Lamise had a surgery in France when she was about 12, and the condition improved. She was scheduled to go back to France in following years for more surgeries but couldn’t because of insurance and government travel issues.
In her 20s, after her father passed away, she experienced excessive bleeding and pain from the condition as the malformation grew. Doctors in Egypt said her case was too complicated for them to treat. She and her mother accepted the news that her condition couldn’t be helped.
Three years ago, she came to the University of Akron on a scholarship through U.S. Aid Step, a U.S. federal program that helps Egyptian women earn their MBAs.
With her limited insurance as an international graduate student, Lamise did not have hopes of medical intervention — until a group of UA professors and community members began to rally around her.
Now “Team Lamise,” as they call themselves, is trying to find some solutions for Lamise as her venous malformation continues to grow and potentially threatens her life.
Lamise is from a country that she said focuses on women’s outward beauty. She’s faced discrimination seeking jobs.
Last year, while back home in between receiving her MBA from UA and coming back for another graduate degree, part of Lamise’s program required her to get an internship in Egypt.
Lamise’s area of study is in marketing, and she wants to eventually work for or start a nonprofit for disabled people in Egypt.
Several times, her job interviews were progressing by phone. But once the prospective employers saw Lamise, the jobs did not materialize or she was asked if she could work from home and not come in to the office.
One particularly cruel Egyptian businessman offered her a job over the phone. But in the office the next morning, “he didn’t look at my face,” she recalled. “He didn’t look at me.”
She confronted him, asking, “OK, are you now offering me the job or not?”
Lamise has three role models, all Americans: Oprah Winfrey, who taught her to have self-esteem; motivational speaker Anthony Robbins, who instilled the importance of giving back to the community; and Nick Vujicic, a motivational speaker born without arms or legs, who taught her not to define herself by her differences.
The businessman gave Lamise a proposition: If she could get Robbins to come to Egypt for an event to be held at the pyramids, he’d hire her.
“It was like giving me an impossible offer,” Lamise said.
Robbins didn’t come to Egypt, but Lamise tried. She didn’t get a response to an email.
Lamise has been asked since she wears a hijab to cover her hair — out of respect for her Muslim religion — why she doesn’t use the scarf to also cover her face up to her nose.
After all, that could stop the stares from strangers.
“Because I’m beautiful,” Lamise replied matter-of-factly. “I wear it for religious reasons and personal reasons.
“For me, the reason for actually wearing a scarf is to say, ‘Don’t judge me for how I look. Don’t judge me because I’m beautiful. Judge me because of what’s in my brain, not what is under my scarf.'
“If I’m going to cover my face for you to feel comfortable to talk to me, I’m not going to do it.”
Except for that one time with the rude woman in the car, Lamise said she has felt nothing but welcome in Akron and on the university campus.
At an international student organization orientation fair earlier this fall, students readily walked up to Lamise as she held her outstretched hand offering a handshake while she and another student manned their Cross Cultural Association table, an organization through the School of Business Administration.
They joked and laughed.
Xiao-Jing Fang, a fellow graduate student and president of the group, became friends with Lamise, the vice president, a year ago.
“Before I knew her, I saw her on the street and thought, 'This girl must be really brave.’ I’m touched about her. My tears may come out. She seems so confident,” Fang said.
Lamise said she doesn’t want people to feel sorry for her and she doesn’t think there’s anything “wrong” with her appearance, though she does want to treat her condition for health reasons.
The Akron-based Team Lamise is rallying to improve her quality of life by addressing the threats to her vision and, potentially, her ability to eat and breathe. They have created a GoFundMe (www.tinyurl.com/TeamLamise) to try to raise funds to help with her medical costs and to help her stay in the United States for treatments until she returns to her native Egypt for her career.
“We are all born beautiful. We make ourselves ugly with time,” she said. “Some people, even in Team Lamise, some of them don’t believe I believe I’m beautiful. They said I say it to comfort them.
“I was born beautiful. I want everyone who has anything on her face or even body, to believe ‘I am pretty.’ ”
Lamise also wants to educate people, particularly youngsters, that being beautiful is more than skin deep.
Lamise said she prefers, for instance, that mothers encourage their children to talk with her rather than pushing their face away or scolding them for staring.
“Some kids are afraid of anything different. Teach your kids or educate your kids about anyone different; you need to let them break the barriers and not be afraid of this stranger,” she said.
Lamise said she’d like any excess funds raised by Team Lamise to go to Akron Children’s Hospital for other families who are struggling to afford care. She also wants to coordinate with the hospital to visit children like her with facial differences.
“I believe that’s my story. This is my goal in life — I was born to convey a message and this is my message.”
Read Day 2 of Brace Face
Read Update after series ran (with video of Lamise describing her heroes)
Betty Lin-Fisher can be reached at 330-996-3724 or firstname.lastname@example.org. Follow her @blinfisherABJ on Twitter or www.facebook.com/BettyLinFisherABJ and see all her stories at www.ohio.com/betty