Medical syndrome shifts plans for Columbia Falls senior

(This is the final profile in the Inter Lake’s spotlight series on standout graduates of the Class of 2020.)

Leaning against a table in the home of the Bodily family is a painting of a breaking wave beginning to curl. The wave transitions from dark to light colors against a black background.

Painted by Columbia Falls High School student Chantelle Bodily, it has come to symbolize the ebb and flow of emotions the 17-year-old has experienced since being diagnosed with Ehlers-Danlos syndrome her freshman year of high school. According to Mayo Clinic, Ehlers-Danlos syndrome “is a group of inherited disorders that affect your connective tissues — primarily your skin, joints and blood vessel walls.” For Bodily, the syndrome has presented itself with hypermobility in her shoulder, hip and finger joints, among other symptoms, which she began experiencing as an eighth-grader, and causes chronic pain.

“It started out with a basketball at a game,” Chantelle said. “All of a sudden my shoulder dislocated and they couldn’t get it to go back in.

“It kept slipping out of the joint and stayed like that through multiple surgeries that all failed instantly,” she said, explaining the different attempts to anchor her joints.

“Then all of a sudden, on its own, my left shoulder did the same thing and then my hip did it,” Chantelle said, with no explanation — until there was, after visiting Shodair Children’s Hospital.

With the diagnosis came anger, fear, heartache and vulnerability, yet it eventually shined a light on her inner strength, courage, gratitude and creativity.

As her body changed, so did her dreams.

Throughout high school, she had focused on taking science and math classes in preparation to become a surgeon. Following the diagnosis, and unsuccessful surgeries, she was encouraged by her mother, Lisa, to do things daily that brought her joy. One day she picked up a paintbrush. Now, her dream is to be a freelance artist and have a studio where she can teach community art classes.

While her dreams may have changed, her perseverance hasn’t.

Academics were one area where her determination shone brightly as she learned to adapt to the disorder. Although teachers and counselors were concerned about the burden school would have on her, offering to lighten her course load, Chantelle wouldn’t have it. She poured herself into her studies with renewed focus and the support of her parents, which includes father Thain.

Academics was the key to maintaining a sense of normalcy, which is why graduation will be a milestone she is very much looking forward to.

On June 6, she will graduate with a 3.89 GPA and receive an honor diploma for additionally completing Advanced Placement classes.

After going from doctor to doctor, surgery to surgery, and traveling as far as New York, she was disheartened to find no permanent solutions exist.

“You can’t see just a normal doctor, or even like a shoulder specialist, you have to have someone with experience in it,” Chantelle said, noting doctors from around the world have studied, or provided input on her case. “It’s so hard to treat because it affects people differently. There’s a spectrum. Surgeries can be successful for one person and not another.”

The effects of Ehlers-Danlos syndrome aren’t always visible.

On this particular day, Chantelle wasn’t wearing the many braces that used to make the teen feel embarrassed at school, instead opting to rest her arms on pillows during an interview with the Daily Inter Lake.

“That’s actually been the hardest part. Ehlers-Danlos has been called the invisible illness because people can’t see it unless you have the dislocation, but like I’m wearing a shirt, so you can’t see it and people at school didn’t believe me,” Chantelle said, pulling back a sleeve to reveal a dislocated shoulder. “That was really hard, but I guess you have to be vulnerable enough to show them that you do have things, but the chronic pain, there is not way I can show that to people.”

“I have a very high pain tolerance now. Like I am in intense pain, but I can smile. I call it my game face, so I can just like put it on,” she said.

In educating her classmates about Ehlers-Danlos syndrome, she started the Instagram account Life as a Zebra.

Showing vulnerability can be daunting, especially for someone with an independent spirit. Chantelle may need help with movements that are as basic as picking up a textbook, opening the refrigerator door, pushing her wheelchair, or washing her hair. She continues to work on accepting that she has to rely on others.

“My sister is a freshman, so she is the most helpful person on the planet and my brother was in high school, like a senior in the beginning. The counselors, front office, my friends have all been helpful,” Bodily said.

Her mother has also been by her side to pull her through dark times.

“I just did not see the light in the world at one point and my mom said you have to write three things a day you are grateful for,” Chantelle said, whose first thought was, “Well, I guess I live in a house.”

Lisa said she saw the anger and hurt in her daughter in the beginning.

“I couldn’t rely on my body and I didn’t know what to do or how to handle that,” Chantelle said. “I couldn’t even pick up a pencil. At one point I couldn’t move my fingers. They had to strap me to things in physical therapy to do anything. I couldn’t even move myself.”

Now the pages overflow with her gratitude.

“It’s been really good for her,” her mother said. “If she has those down moments she can look back and reflect — I can shower by myself, get dressed at the moment.”

“And walk on my own right now,” Chantelle added.

“It’s those little steps,” Lisa said. “It was really important for her to see those things.”

And life is still a balance between happiness and sadness. Chantelle strives for a positive approach to life, but she also allows herself cry.

Art has become Chantelle’s outlet, serving as a physical and emotional therapy. Currently a self-taught artist, she plans to take art and photography courses at Flathead Valley Community College, something she wasn’t able to pursue during high school. Soon, she will have a studio space in the house that is being remodeled.

She said each painting is a “placeholder for memories.”

“A certain painting will hold all these memories of a certain part in my life and I’ll look at that and it will bring everything back,” Chantelle said.

Currently she paints using pouring techniques, which don’t require holding a paintbrush.

“I use cake spatula to move the paint,” Chantelle said.

Known as a detail-oriented planner, the technique taught her about letting go.

“You have control, but you also have no control,” Chantelle said.

“Sometimes like that one,” she said pointing to“The Midnight Wave” — it’s a process.”

“I love how it flows together. I also love how it starts dark at the bottom and then it gets to the light it kind of represents where I was. I was in this really dark place, but now I’m happy, and I’m OK with my body, and I’ve accepted this,” Chantelle said. I feel the way the colors go represents my journey I guess — going from dark to light.”

More of Chantell’s work may be viewed at https://www.instagram.com/artista.telle, or her website, which is under construction at https://artistatelle.com.

Reporter Hilary Matheson may be reached at 758-4431 or hmatheson@dailyinterlake.com.