Like most high school seniors, Mysha DeJong just had a blast with her friends at prom and she's looking forward to receiving her diploma in a couple weeks. She loves punk rock, once dyed her hair pink, feels kinda nervous about the future but optimistic too. She's, you know, a teenager.
Oh, and she also had the left side of her brain surgically removed four years ago.
DeJong, who grew up in Seattle and lives in Rocky River, Ohio, was born with polymicrogyria, a condition that caused her to experience severe seizures. At age 14, she was taking 27 pills a day and needed constant supervision. At a time in your life when you want independence more than anything, it was unclear whether DeJong would ever get to enjoy any of that.
The brain procedure had "a 50/50 shot of me dying," DeJong told MTV News, but "the surgeon was awesome." There were some serious long-term effects -- she lost the use of an arm, and some of her vision -- but her positivity has been inspiring people worldwide. We caught with up DeJong (and her mom, Melissa Holman) this week and they opened up about life before and after surgery, the bullying she can no longer remember and how music gets her through every day.
A Choice She Had To Make
Mysha DeJong: "[The condition] affected me to the point where I couldn't learn, and was taking so many pills every morning and every night to keep that condition under control, just enough so I wouldn't be in the hospital every day. ... I had some behavioral issues from the medicine. ... I [had the surgery] to save my life. ... I don't know how I did it, I don't even know -- it was probably the best decision I could make. If not, we'd put so many things at risk."
Melissa Holman: "Before surgery, Mysha had zero independence. She couldn't swim, go anywhere alone, take a bath -- anything where you could lose consciousness and create a danger. She couldn't learn between the drugs and the seizures. ... There were years of testing, hospitals...
"Mysha decided to do it; it was her decision. When you do it for a two-year-old, you [as a parent] decide; when you do it to a 14-year-old, they decide."
Some Classmates Understood ... Others Didn't
Holman: "She had a seizure in class -- in the middle of class."
DeJong: "It was really embarrassing for me. I never wanted it to happen at school or anything like that. ... [T]here were a few kids who reached out and tried to be my friend, or were my friends -- some just shied away. ... I personally don’t remember [the bullying]. My memory’s not that good."
Holman: "The kids in sixth grade would ... make her sit in the corner if the teacher was out of the room, wouldn't let her participate in group activities and would call her names. That was one of the reasons we moved, the bullying was horrible. The new district has been better. ... She had a friend whose mom was uncomfortable with her being at their house; [the mother] didn't want her kid to see a seizure.
“She was [mostly] ignored. .... This [viral story] is the first attention she’s ever gotten, ever, which is crazy. She never thought anyone would care, because it’s her life."
DeJong: "It was hard because any time I did have friends over before the surgery, I had to take a few minutes to ... take my medicine, and that was never fun. My friends would always ask, ‘Why do you take those? What are those?' They'd ask about the pillboxes, and it was hard to explain it to them. No one can understand unless they have it."
Surgery Was A Success, But Presented New Challenges
Holman: "Disability isn't always as visual as you think it is. She's definitely disabled -- 50% of her field of vision is gone permanently. She's paralyzed on one side of her body, but she doesn't use a walker. ... We've experienced a lot of ignorance -- people have an image in their head of what someone with half a brain looks like; I certainly did. I think she breaks that mold."
DeJong: "Living with it is kind of hard, but I guess it sounds harder than it is -- especially when you kind of learn to deal with it and do things. ... Compared to how I used to be, I feel a lot better."
Holman: "We saw remarkable strides this year. ... She was on the honor roll. ... There's been teachers who've remarked they didn't even know [she had the operation]. ... She lost a lot of her memory from the drugs and seizures and everything else. [Now I'm] seeing her come into her own and find passions and find friendships -- and maintain friendships."
Now She's Helping Others Face This Choice
Holman: "Mysha will visit families thinking about having surgery, whether it's [for] an infant or an older child. A lot of parents need to see the other side isn't what you imagine it is ... you can come out on the other side of this and make it."
DeJong: "Do your best to get through stuff like this -- it will always, always, always get better. At least from my experience. ... I've become a lot more confident since freshman year and I have a lot more friends. ... There's been so much work going into four years of my life."
Holman: "Medically speaking, she should not be able to speak at all, but [her speech center] migrated to the right [side at birth]. ... The Brain Recovery Project is looking at her level of function with UCLA and Caltech ... because she's one of the highest-functioning kids."
She Kept Her Sense Of Humor
DeJong: "I'd tell people [before surgery] I had half a brain, so [now] it'd be truthful."
Holman: "Friends make jokes with her, good-natured, like 'just because you only have half a brain doesn't mean you can't do [something].' ... And to her, the dress is blue and black -- it's [based on] left and right hemisphere. To me it's white and gold ... she's right-brained!"
The Future Is A Question Mark -- But It'll Definitely Have Music
DeJong: "[Graduation] is nerve-racking and I feel anxious about it, and I feel really nostalgic about high school now that I'm almost out, 'cause I'll have so many memories. ... Prom was amazing -- it was a lot of fun because [of] all my friends, it was great to see everyone laughing...
"I'm thinking about trying a community college and then at one point transferring to a four-year ... to study music. ... Music has been always a huge part of my life; it helps me cope with a lot of things, like depression, and it helps me to calm down a lot. And I’m actually in the school choir; we have a concert this month. ... This year we’re doing 'You Ain't Never Had A Friend Like Me.'
"My favorite band is Fall Out Boy. There are so many songs by them -- I think [the best are] 'Thnks fr th Mmrs' and the new one, 'Immortals.'"
Holman: "She was born in Seattle -- say Nirvana!"
DeJong: [Laughs] "Nirvana’s pretty good though."