Bekha Scott | So Much More Than NF2
The Facts of Bekha’s Condition
In 2003, when Bekha Scott was 13 years old, she was diagnosed with neurofibromatosis Type 2 (NF2). The condition created tumors in Bekha’s brain and spinal cord, resulting in problems with hearing, vision, speech, balance, and mobility. During her life, she had 11 surgeries to remove tumors, including four in one year, and had to teach herself to walk three times.
Bekha was almost 26 when she died on April 2, 2016, leaving her mother Jennifer Williams, her father and stepmother David and April Scott, three sisters, grandparents Larry and Judy Wilson, and many other family members and friends.
Those are the facts of Bekha’s illness.
But her life was so much more than what happened to her body, and she knew it. “I’m not disabled,” she once said. “I just have a body that doesn’t work right.”
The Real Bekha
To give you an idea of her spirit, we have collected some quotes from Bekha’s diaries and her Tumblr blog (Bekhaism), as well as memories from her family, friends and others.
- At 13, Bekha could be very plain spoken: “Tomorrow I have to go to the doctor just to talk. He is going to say, ‘Bekha, you have a tumor. It’s pushing on your eye.’ Poop!” May 2003
- The tumors often mystified and even frightened Bekha: “I’m afraid that eating something or taking a shower will hurt me, making my tumors grow. Also I’m afraid that if I am boy crazy, my tumors will grow.” November, 2003 Below: Bekha in the hospital for one of her many surgeries
- By age 16, Bekha was convinced God had a purpose for her life: “I was at Reality, my high school youth group, when someone asked, ‘Why was I made?’ A fellow classmate answered, ‘I believe that God has roles that he puts people into. And those roles are to make a difference in others.’ This made me feel good. To think that God chose me to play this role in life just made me feel great! My purpose in life is to live for God, and to make a difference in your life.” April 24, 2006
- Even in pain, Bekha thought of others: “I don’t allow others to know how I feel because I know that others shouldn’t carry the weight of my problems but there are times I want to shout, ‘How would you act if you had my problems!’ I never let myself get to that point. I stop myself and think of all the good things and how it could be worse. I let myself cry for a minute and then go on. I don’t know how long my life style like this is going to last but I plan to fight my problems to the end. I won’t give up.” June 10, 2006
- Bekka played wheelchair basketball her senior year in high school: “I used to be happy dancing around the house with the music up high in my room, but since I can’t do it anymore I found a new way to be happy which is playing wheelchair basketball. I think I like playing basketball better than dancing.…It is scary having to learn a new way to be happy, but sometimes it can be a better happiness.” November 11, 2006 (In 2015, her balance problems became so bad she could no longer play basketball: “I would need a lot of seatbelts!”) Below: Bekha on the basketball court
- Bekha often questioned God, but found answers in unexpected places: “My English teacher got mad [today] … She says, ‘Do you guys know why I do the dishes at home or the laundry? Do you think it is because I like doing those things?’ One guy says, ‘It’s because it needs to be done.’ She says, ‘No! It’s because I love my family.’ … [I know now why] I try so hard—because I love my family, my friends, myself, and God. For them I will fight.” March 25, 2007
- Bekha loved anime and manga. “In May I went to an anime convention! It was amazing!. … It was so easy to be myself there, to act totally dorky and have no one make fun of me. In fact, the weirder you act the cooler you were!” August 14, 2007 Below: Bekha dressed as Envy from Fullmetal Alchemist, a manga series
- In 2014, Bekha earned a Bachelor of Social Work from the University of Illinois Springfield: She enrolled in 2011, having completed an associate’s degree from Illinois Central College in Peoria. Her time at UIS was interrupted by three spinal surgeries—two in 2012 and another in 2013. “Just wheeling herself to class was a huge effort for her—like a marathon,” said her mother, “and everything took ten times longer than other people. She read slower. She wrote slower. She typed slower. I don’t know how she did it!” August 2011 (initial enrollment) Below: Bekha at UIS
- Bekha was a leader at UIS. She had a close group of friends, who together launched a chapter of APO, a national service organization. Bekha became president, presided over meetings, held strategic planning meetings, and planned social and fundraising events. Below: Bekha with other APO members
Mark Dochterman, at the time director of the UIS Volunteer and Civic Engagement Center,* remembers Bekha: “She was definitely her own person, a little bit of an alpha in the group. She wanted to be the leader, the vision center for the organization.” She must have done a good job. Toward the end of year as president, she received a Distinguished Service Key from the national APO organization. April 2013 Below: At APO conference
- Bekha was also active in the the Christian Student Fellowship at UIS. “She was strong, determined, independent, and committed to serving,” said Gretchen Magruder, CSF Assoc. Campus Minister, of Bekha. Bekha helped with Rez (Resurrection) Week, when students do intentional service and outreach events to ears. Bekha helped plan an event during which CSF members handed out notes of encouragement and eggs filled with candy to UIS students, according to CSF Campus Minister Lindsey Lasley. Below: Helping with the Rez Week event.
- Bekha was a “goofball” (her sister Meghan’s word): In response to the ALS Ice Bucket Challenge, as a joke Bekha convinced a friend to start an NF Hot Soup Challenge. “She threw canned soup at a friend, and the friend screamed,” Meghan said. “The soup wasn’t hot, and the video said, ‘Don’t do this at home.’ But they got a laugh,” said her sister Meghan. April 17, 2015 Below: With her father, David Scott
- Bekha kept looking for ways to help others (written after reading I Am Malala): “I don’t know how I can help, how I can contribute. I am so crippled. …but I was privileged to receive an education. I was blessed to know subjects, people, and events. Life! Yes, I am physically crippled but I can still speak and write. I can still make a difference.” November 22, 2015 Below: With her grandfather, Larry Wilson
- To the end, Bekha never lost her sense of humor: “Often I’ve been getting scared. I really can’t hear, and I can only see in one eye. What if I lose that too? If I become blind, too, I’m going to become a food taster. Yep, bring me good things to taste!” March 8, 2016 (less than a month before she died)
Encouraging to the End
During her last hospital stay, Bekha shared a room with Aldara, a young mother with cancer who had been given only 4 months to live. Aldara was scared and uncertain about her future. Gravely ill, Bekha’s will to live inspired Aldara to fight her illness. Aldara is still alive today, three years later. Below: Aldara and her husband at Bekha’s beside
“Bekha’s strength that day was more of an inspiration than words can describe,” said Mike Krentzman, who told about the encounter on Facebook. “Thirteen years of fighting, after being told she would never live to be a teen, never graduate high school, never go to college. She had accomplished all those things, and still, with tumors all over her insides, she said, ‘Keep me alive if you can.'”
Bekha passed away two days after this, but before she did, she asked her mother to pass on to Aldara a teddy bear she had once received after surgery. That was Bekha—encouraging others even at the end.
The UIS Rebekha Scott Servant Leaders Endowed Scholarship
To honor Bekha, her family has created a scholarship in her memory at UIS. It is for students with financial need who demonstrate a commitment to service.
“I want it to be for people like Bekha,” said her mother, Jennifer (below with Bekha), who initiated the scholarship. “Most of all, she wanted to help people. That’s who Bekha was. Her inner purpose was to encourage and help other people.”
If you have been inspired by Bekha’s exuberant, generous life, please consider making a gift to her scholarship. You can contribute safely online here. Every gift you make will be added directly to the scholarship to benefit students.
*Mark Dochterman is now Asst. Vice Chancellor for Student Engagement at UIS.