By GWEN OREL
Addison Nejes found out she had scoliosis when her parents saw a note in her medical file — months after the school nurse wrote it.
The school never sent it home.
The 13-year-old, of Chatham, then wore a brace for a year and a half. She never felt embarrassed; she thought of it as armor: “I showed off my brace. I would make jokes about it, like, ‘Oh, I rock hard abs’ and stuff. I felt like it was part of me. It was just one of those things, everybody has their things, and my thing was scoliosis. I almost felt more powerful with my brace. Like it’s who I am.
“So it did kind of mess with myself when I found out that it didn’t work, and that I needed surgery.”
Scoliosis, a sideways curvature of the spine commonly diagnosed in the growth spurt just before puberty, affects 3 percent of the population. Girls have a higher rate of having a more severe form of the condition, which, if not treated, can lead to lung and heart damage, as well as back problems. The cause of most scoliosis cases is unknown, though it can be caused by muscular dystrophy or cerebral palsy.
Being an adolescent is difficult at any time, what with a changing body and a changing academic life. Adding scoliosis to the mix brings another reason to feel self-conscious.
Nejes got through her surgery this past year and feels empowered again; an organization called Curvy Girls had a lot to do with that.
The international organization of peer-led support groups has a New Jersey chapter, headed by rising Montclair High School senior Maggie Borgen.
June is Scoliosis Awareness Month. Usually, the group holds a walk to raise money for girls to attend the Curvy Girl convention. This past June, they continued to meet on Zoom, although there was no physical convention.
Through Curvy Girls, Nejes met Borgen, who not only underwent the same back surgery Nejes had, she had the same surgeon, Dr. Roger Widmann.
Borgen helped her through it, Nejes said. She told her to get a good pillow, because it’s easier to sleep on your side, and that afterward she would feel as if she had a broomstick up her back.
“It’s very helpful because you know that you’re not alone,” Nejes said. “And you know that there’s somebody else who feels the same way.”
Many people have misconceptions about scoliosis, Borgen said. Those with scoliosis do not always bend weirdly, because it’s possible to have compensatory curves that make the person appear to be standing fine.
People told Nejes that it could not be that bad, because they could not see it. Her friends tried to be sympathetic, but they did not really understand. “The only people that were really there to help me through this, that really understood, were the girls who went through it, too. So I want to help other people,” she said.
JOKES ABOUT SPINAL FUSION
Borgen herself did not know about the group until after her own surgery.
And when she did find out, after receiving a flier, and joined, following the surgery that winter, it made a big difference to her.
“It’s something that still affects your life continuously afterward as you’re healing. It was really empowering to be around other people who had gone through the same thing,” Borgen said.
Her own journey had been both unalarming and sudden. The condition ran in her family; her mother had it, and Borgen was checked young. At first when she was diagnosed, at a young age, her curve was too slight for a brace.
“It was kind of one of those things that, in school, when it was like ‘Tell a fun fact about you,’ I would say I have this thing called scoliosis, like it was nothing more than that to me, really,” she said.
But then Borgen had a growth spurt in middle school, and her small curve was suddenly 40 degrees. Just before eighth grade she learned she might need a brace.
And then she was told she was too far along to be braced, and had to go straight to surgery.
“So it was just a whirlwind, and very overwhelming,” she said. She wishes she had known about Curvy Girls then.
The support group meets once a month, usually with the girls in one room and parents in another.
During the pandemic, the girls have met online, and the parents portion has not happened.
Often the girls talk about how they are doing and where they are with their conditions. Sometimes they do projects, such as making videos, and sometimes they have yoga and breathing sessions, Borgen said.
“But mostly it’s talking, and having a group of girls that understand what’s happening,” she said. “There’s bracing and then even when you have surgery, there are different kinds of surgery. It could be spinal fusion, or tethering.” There are people who have just been braced, people who are about to have surgery, people who have just had it.
And even almost four years post-op, it’s helpful to have that group, Borgen said: “And I still will get back pain, so it’s super-helpful to be able to talk to other girls who understand.”
It is the only place where there are other people who understand about having metal rods in your back, she said.
“We make jokes about spinal fusion. It’s a very random thing. Because you have to understand what’s in your back for it to be funny,” she said.
Like Borgen, who is 17, Ananya Saxena, a 16-year-old rising junior at West Windsor-Plainsboro High School, did not know about Curvy Girls when she was diagnosed in seventh grade. She had just moved to a new school district when she found out.
“I didn’t have any friends in the beginning of the school year,” Saxena said. “And I also got diagnosed with scoliosis a bit before my birthday. But even if I did tell my friends, they didn’t really understand what it meant.”
Her doctors allowed her to wear the brace after school and at home. Even so, there was an adjusting period. “It puts a lot of pressure on your spine, because it’s trying to straighten and lower the curve. So other girls also had that same adjusting period. And that was nice to see, that I wasn’t the only one who had a hard time at the beginning,” she said. “It really hurts a lot in the beginning. I had to wear it for 16 hours.” At first it was even hard to sleep.
Her brace worked — she wore it for a year, and did not need surgery.
At her last checkup, her doctor told her she was good to go, that she did not need to worry about this anymore.
But she stays in the group to help others. And she has a message for teens who do not have it:
“If a friend comes up to you and tells you they have scoliosis, instead of talking about it for one minute, learn more about it and actually try to understand how your friend feels,” she said. “Because the friend that comes up to you trusts you.”