While many teens feel self-conscious about braces, acne or clothes, Chelsee Stark had a unique concern: a scar that ran the length of each knee.
The scars, from surgical incisions, broadcast that she had both knee joints replaced ― something that typically happens to much older adults.
“I was self-conscious about it for a long time,” she said.
A decade later, Stark now wears her scars with pride.
I’m thankful for my surgeries. I wouldn’t be able to use my arms or legs or be able to walk without them.
She speaks openly about her experience with joint replacements in an effort to help others. As a member of the Spectrum Health Patient and Family Advisory Council for Orthopedic Health, she volunteers her time, skills and insight to make life better for patients facing orthopedic treatments.
And Stark, who has battled rheumatoid arthritis most of her life, has extensive experience in the operating room.
At 30, she has undergone 11 orthopedic surgeries―including joint replacements for both knees, hips and shoulders.
“I’m thankful for my surgeries,” she said. “I wouldn’t be able to use my arms or legs or be able to walk without them. If I didn’t have the option for surgery or access to health care, I would be suffering immensely.”
Compared to that, she said, “scars are nothing.”
A childhood with arthritis
Doctors diagnosed Stark with juvenile rheumatoid arthritis when she was 6 years old and living in California. The disease causes joint pain, swelling and stiffness.
“I was in pain a lot,” she said. “I couldn’t do a lot of things other kids could do.”
She often missed school because the pain left her unable to function in the morning. As her hands suffered permanent damage, she learned to write using rubber grips that made it easier to grasp a pencil or pen.
To combat the disease, she took medication and went to physical therapy every week. Her therapist gave her hands ice baths and hot paraffin wax treatments to loosen up the joints.
At the age of 12, she underwent her first operation ― to fix the growth plates on her knees.
At 18, she received her first hip replacement. Her six joint replacement operations occurred in a span of two years.
“All of the (operations) reduced pain,” she said. “I waited as long as I possibly could before I had any surgery. I prefer alternative therapies 100 percent over any medical intervention, so (the pain) was pretty bad.”
They are very compassionate and concerned and eager to improve the system. It’s really a wonderful thing. And a lot of times we do get to see our input turned into change.
Stark, who moved to West Michigan at 19 to attend college, also underwent emergency surgery in 2011 after she broke her neck and lower back in a car accident. A surgeon fused several vertebrae in her neck.
Her last surgery occurred in October 2016, when she had her left ankle fused at Spectrum Health Zeeland Community Hospital.
Stark graduated from Grand Valley State University with a bachelor’s degree in psychology, with a minor in sociology. She brings her life experience and education in her role with the Patient and Family Advisory Council.
“Since I was a kid, I’ve always wanted to do something to help other people,” she said. Serving on the council “is a great way I can use all these experiences and help improve the experiences of others.”
She has provided feedback to Spectrum Health nurses on communicating fall-prevention techniques, provided input on marketing plans, helped with staff-training videos and reviewed medical office designs.
“She brings a wealth of experience” to the role, said Steve Rosenberg, chairman of the council. “Her experience over time has been really beneficial to this group.”
While many members have experienced one joint or bone surgery ― a hip or knee replacement, for example―Stark has experienced a wide range of operations.
“She is a person who is always prepared,” added Deb Sprague, an improvement specialist with the Patient and Family Advisory Councils. “She comes to the meetings filled with ideas and suggestions.”
Bringing a fresh perspective, her ideas often translate into tactical steps staff can implement, Sprague said.
Contributing to the community
Stark still contends with the progression of her arthritis.
In addition to taking medication, she does what she can in her personal life to minimize inflammation. She adjusts her diet ― eating a mostly plant-based diet, goes to the gym for workouts and creates custom blends of essential oils.
“It’s an aggressive disease and requires aggressive treatment,” she said.
Because artificial joints have a lifespan, she expects more joint replacement surgeries will be in her future.
Volunteering with the Patient and Family Council provides a rewarding way to improve the medical system and to serve others.
“I’m disabled. I do this volunteer work to help contribute to the community,” she said.
She appreciates the Spectrum Health staff’s interest in her ideas.
“They are very compassionate and concerned and eager to improve the system,” she said. “It’s really a wonderful thing. And a lot of times we do get to see our input turned into change.”