If you see a young woman in a wheelchair sitting by herself at Fairview Heights’ Barnes & Noble cafe, say “Hello.”
It may be Bekha Scott.
She won’t smile back, but appreciates the gesture.
“I have neurofibromatosis (NF2),” said Bekha, 25. “Tumors grow on my nerves. I lost the ability to walk. My left facial muscle stopped working. I lost my smile.”
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But she has kept her sense of purpose, her sense of wonder.
Bekha lives in Peoria with her father, David, but comes regularly to the metro-east to stay with her mom, Jennifer Williams, of Belleville. She has three younger sisters, Meghan Scott, 21, a student at Bradley University in Peoria; Ellie, 19, who goes to college in North Carolina; and Adelyn Williams, 18 months.
On Saturday, Dec. 12, Jennifer dropped off her daughter at the bookstore, then went to do some shopping.
That’s when something nice happened to Bekha, something she wanted to share.
“I was sitting at a table at (the cafe) in the Barnes and Noble at St. Clair Square,” she said. “The table was outside the main coffee place because the others were full. The table was close to bookshelves and people browsing through them. I was just skimming the ‘Memoirs for Dummies’ book because I’m interested in writing one. I was just quietly minding my own business when this man walks up. I assume he was old, or at least older, because he had white hair. He just says, ‘This is for you,’ and hands me a card.
“I said ‘Thank you,’ and he walked off. It was a Christmas card. I didn’t open the card at first. I was kind of scared. After a few minutes, I get the courage to open it, hoping it won’t explode. The front of the card says ‘love, peace, and joy’ with pictures of cute drawn houses. The inside of the card on the right says ‘An enjoyable old-fashioned Christmas to you and to yours.’ On the left in handwriting, it read, ‘Recently my wife passed away, and I no longer have that beautiful person to give a gift; you are a beautiful person! Have a nice holiday.’ On the right side was $50.
I have lost a lot, but I can still see and feel kindness.
Bekha Scott on what’s important to her
“I have lost a lot, but I can still see and feel kindness.”
Bekha was in town recently, and back at Barnes & Noble, talking about life and the kindness of strangers.
“It made me really happy,” she said of the gift. “I was really moved by it. I have a lot of medical problems. This guy doesn’t know this. All he saw was a lady in a wheelchair. He didn’t know about my hearing loss or my facial drop.”
“It was the best Christmas present,” said her mom, “better than anything we could give her, to have a stranger come up and be nice like that.”
Bekha plans to donate the $50 to Children’s Tumor Foundation to help others with her condition.
It’s not the first gift she has received from a stranger.
“I can’t stand up. Years ago, some person donated their standing frame,” she said.
“It’s medical equipment to get her body stretched out,” said Jennifer. “She’s strapped into it. It helps her stand.”
Bekha was 13 when she was diagnosed with neurofibromatosis, a rare disease that affects 1 in 25,000.
“A dermatologist removed what we thought at the time was a mole,” said Bekha. “He had it tested and found out it was a tumor.”
Symptoms had begun much earlier.
“I started limping at the age of 6, and my pediatrician had me do a brain MRI which showed I had a brain tumor. By the age of 7, I had my first brain surgery.”
Since then, she has had three more brain tumor surgeries and seven spinal tumor surgeries. She has lost 2 inches in height and is now 5-foot-7.
“She had 10 of 11 surgeries in Boston,” said her mom. “She lost her hearing in 2006. They tried to remove a tumor and it damaged the acoustic nerve in her brain.”
Bekha has had radiation twice and has been on chemotherapy for a year.
“She does experimental chemo through Siteman,” said Jennifer. “The chemo may keep the benign tumors from growing. ... She’s fairly stable.”
Bekha lost the ability to walk when she was 15. If that weren’t enough, tumors cause balance issues.
“Tumors grow on my inner ear,” she said. “Even sitting in a wheelchair, I feel like I am going to fall.”
How does she cope with everything?
“One way is by diving into things you find entertaining,” said Bekha. “In this anime show, ‘Fruits Basket,’ I was watching the main character who had a dish of pot stickers. When I went to the Cheesecake Factory, I saw they had pot stickers as an appetizer. Of course, I had to try them. Aw, man, are they amazing.”
Family and friends help, too.
“I am the oldest,” said Bekha. “I have a sister 21 and 19 and a baby sister who is 18 months. A lot of times, it feels like I am the youngest because they take care of me. I can’t drive. I make them drive me places. It’s kind of like you have three moms sometimes.”
“I wouldn’t trade her for anything,” said Jennifer, a former IT network manager, who is divorced and remarried. “She’s my miracle. It’s not anything you would want anyone to go through, having a sick kid.”
Bekha enjoys painting and knitting, using a loom to knit baby blankets and scarves. She also likes listening to indie music and reading.
“When she was coming out of surgery and in the intensive care unit, she would say, ‘Read to me,”’ said her mom. “That’s the only thing I could do. Reading was like her escape.”
“I still read a lot,” said Bekha. “I have days where I am just sad. Emotions come and go. You let sadness take you, but then you get over it. ... I like young adult books like the ‘Twilight’ series. I actually had two books signed. ‘The Hunger Games’ series, I had one of those books signed.”
She concentrates on what she can do.
“I can still talk and use my hands. I really like to listen to people. Since I can’t really listen anymore, I still text people and try to write.”
She learned early to make the most of what came her way. She took part in Girl Scouts, attended concerts and joined a service fraternity in college. Bekha has a degree in social work from University of Illinois-Springfield where she lived in a dorm for students with handicaps.
Bekha recently started a blog on Tumblr (a microblogging platform and social networking website) called “bekhaism.”
“It is basically a rough draft of what I would like to write my memoir about,” she said.
Something positive from the tough situation?
“People can be so nice,” said Jennifer. “They hold the door for her coming in in a wheelchair. We get offers all the time for help. Teens, young people, we have nothing but kindness from people. We see the goodness of mankind.”
Bekha likes the bookstore atmosphere.
“I leave her here so she doesn’t have to go in and out of stores,” said her mom. “She likes to get out of house. It’s kind of a break.”
Bekha doesn’t expect much of strangers.
“People see I am in a wheelchair,” she said. “I have facial (issues), and they find out I can’t hear. They’re not going to deal with that. It’s not meanness.”
Occasionally, someone looks beyond all that.
“The first time I came in here, I was looking for ‘Throne of Glass,’” Bekha said of the young adult fantasy. “This friendly guy comes up to me. I told him, ‘I can’t hear. You can text me.’ He was six years younger than me, the same age as my sister. This random guy was nice enough to talk to me on the phone.”
Want to help Bekha with her memoir? Email firstname.lastname@example.org
- Family: father David Scott, of Peoria; mother Jennifer Williams, of Belleville; siblings Meghan Scott, 21; Ellie Scott, 19; and Adelyn Williams, 18 months
- Education: Bachelor’s degree in social work from University of Illinois-Springfield
- TV debut: 2010 MTV episode of “True Life: I have NF.” “I was a main character on that episode.” Here is the link to it: http://www.mtv.com/shows/truelife/true-life-i-have-nf/1635785/playlist/%23id=1635785
- Favorite restaurant: Cheesecake Factory
- Favorite foods: pot stickers and pepperoni pizza
- Hobbies: “I love reading. I love listening to music — alternative indie music.”
- Favorite musical group: Fall Out Boy
- Favorite books: Young adult books such as “Throne of Glass” by Sarah Maas