Federal Way woman tells scoliosis story through photo essay

Published 9:30 am Wednesday, July 13, 2016

At 12 she was diagnosed with scoliosis and was forced to wear a back brace.

At 23 she endured spinal fusion, a procedure that lasted more than half a day, and afterwards had to relearn how to walk.

Now, Stephanie Jarstad wants others with a less-than-straight spine to know that it’s OK to be different.

“Own your uniqueness,” she said. “Everybody has something that makes them feel different, even if it’s not scoliosis.”

Jarstad, a Federal Way resident and regional photographer, collaborated with friend and fellow photographer Tori Dickson to create a photo essay of Jarstad’s ‘S curve.’ The photos feature Jarstad before her surgery, right after her surgery and in the present day.

“I’m super proud of Stephanie for how far she’s come with this part of her life and just how she owns it now,” Dickson said. “I’m really proud of those photos.”

Although Dickson and Jarstad had met each other at a local Federal Way church, the two didn’t really connect until Dickson happened to volunteer to “go see a girl in the hospital.”

That girl was Jarstad just after her spinal fusion, which turned her 60-degree curve into a 15-degree curve. The surgery was a grueling 13 hours long.

Jarstad woke up with some nerve damage and a numb right arm. Today, she still has some numbness in her forearm.

“And this girl comes in, and I’m sitting in the hospital and I couldn’t grip a fork,” Jarstad laughed. “I just had a dead arm.”

After the awkwardness of Jarstad’s mom asking Dickson to spoon-feed her daughter had dissipated, Dickson asked Jarstad if she could photograph her back.

“It’s been especially interesting because I photographed her shortly after the surgery and, at that time, she was still a little unsure about it and kind of shy about the scars and being naked in front of the camera, but this time photographing her was a totally different experience,” Dickson said. “We collaborated with each other how to go about it, and I feel I really captured it a lot more honestly.”

Jarstad coupled Dickson’s photos with her own message of embracing vulnerability and overcoming fears.

She was diagnosed with scoliosis as many teenage girls are – during a routine scoliosis screening in the girls locker room.

“It was an awkward day because everyone’s like, ‘Do I wear a bathing suit or a sports bra?,'” Jarstad recalled of the experience, which was over 15 years ago.

Then the ladies doing the screening crowded around her.

“They were like, ‘Yep, she’s definitely got a curve,'” she said.

Jarstad wore her back brace, which was about an eighth of an inch thick, for a year and a half before she broke her arm and stopped wearing it entirely.

“True to dramatic teenage form, I thought having a back brace was the worst thing that could ever happen to me,” she said. “As if glasses, braces and frizzy hair were not enough, I had to tack on a physical deformity and a back brace. I had to spend puberty in my very own turtle shell.”

While Jarstad was teased a little – people would call her “Scoli” or knock on her brace and run away – she said most of the insecurity came from within.

One day while she was sad, she decided she was going to make a change in her attitude and her outlook on life.

“I started being like, ‘Yeah, I do have a back brace. Punch me in the stomach, feel my abs of steel,’ and then people thought that was really funny,” Jarstad said.

“It became less of a bullying situation and more of a, ‘Yeah, she has this unique thing that is quirky and funny.'”

Jarstad went on to become a gymnast, a diver and a self-proclaimed “adrenaline junkie” before succumbing to the pain she was in and the fear of what it would take to fix it.

“I had a lot of back pain, and then the rotation of my ribs was causing some lung compression,” Jarstad said. “I would get a little more fatigued, and I wouldn’t say I noticed that too much, but I would say I couldn’t run long distances. Then some digestive issues too, because your intestines are in a compressed space, and then I’d get tension headaches.”

And while healing from her surgery took time, Jarstad is as active today as ever.

“I recognize that beauty comes from within, but I also have a new appreciation for the resiliency of my body,” she said. “I appreciate modern medicine and the miracle of what my body is still capable of.”

Jarstad recently returned from a backpacking (yes, backpacking) trip that took her through seven countries in Central America.

“I carried everything on this titanium back,” she said. “It was a huge accomplishment for me. We cliff-jumped, rappelled down six waterfalls, white-water rafted, camped on the beach and kayaked.

“Five years ago, I never though this would be possible.”

Since learning more about scoliosis, Jarstad stumbled across a local chapter of the support group called Curvy Girls Scoliosis and has spoken at one of their meetings.

“That was cool, just to I guess connect with the past and with these girls and wondering what they cared about, what was important to them, what they might be dealing with through their struggles,” she said. “This information wasn’t really available to me when I was dealing with it when I was young.”

For more information about scoliosis, visit www.curvygirlsscoliosis.com.

To see more of Jarstad and Dickson’s photo shoot, visit www.stephaniejarstad.com/blog.

All photos courtesy of Tori Dickson