Patient stories

Marking Time and Moving Forward

August 22, 2022, 3:47pm EDT

Interview and article by: Jennifer Cramer-Miller


As the former Minneapolis Public Schools Superintendent, Bernadeia Johnson has been an educator most of her life. After a recent crash course into an unfamiliar subject, as is her way, she’s flipped newly learned lessons into something she can share with others.

The topic? Kidney disease.

Years ago, when Bernadeia was in a marching band, she learned the command to “mark time”. Your right foot stomps down, followed by your left, but you don’t move from your original position.

“I feel like I’m marking time now,” Bernadeia explains as she discusses her kidney condition. Currently in stage five kidney disease, Bernadeia hopes to hold steady—mark time—to avoid dialysis, and eventually receive a kidney transplant from a living donor.

The woman who has given so much to her community now finds herself on the receiving end. People are stepping forward as donors, although some have already heard they are an incompatible match. Bernadeia doesn’t receive donor information from the transplant clinic directly (donor evaluations are confidential), but she holds onto hope that something will come through for her.

Bernadeia might feel like she is standing still while she waits for a kidney donor to materialize, but she’s not one to stay idle in areas where she can make a difference. She didn’t hesitate before she launched into educating others at risk for kidney disease. Flipping on her education switch, she’s focused on upstream prevention and outreach.
For a decade, she’s been testifying about “solutions not suspensions”, working hard to stop preschool kids from getting suspended from school. “Kids need to learn how to do school,” she says. Employing her connections and skills, she advocated with the National Kidney Foundation and contacted legislators about the living donor protection act. She made it personal by stating, “your support means a lot to people like me.”

Now, Bernadeia has joined forces with the National Kidney Foundation Board, serving Minnesota. Her connection with this established group of like-minded advocates enables her to reach the black community effectively and share what’s she’s learned about the impact of diet and nutrition on kidney health.
Bernadeia learned she had diabetes in 2015. One afternoon, she had to cancel a meeting with city council members because she felt suddenly ill. Her blood pressure and blood sugars were high, two leading factors that cause kidney disease.

Her diet went under the microscope. “I grew up in the south, and I come from a culture of fried foods,” she explains. So now she makes it a point to speak to black communities to educate about the impact of foods choices on kidney health. 
Bernadeia believes in the power of personal testimonies. “All cultures employ storytelling,” she says. “We share our traditions, our history, and create a vision for our future through the stories we tell.”

“If I had known before what I know now, and understood the implications of diet and exercise, I might not have advanced to stage five by now.”
When she held the top two positions in the Minneapolis Public School District for over ten years, food provided calm comfort for stress reduction. This realization sparked another lesson she shares with women leaders. 

“Every time I talk to a female leader, especially a female leader of color, I ask them, ‘when did you last see your doctor?’” She stresses the importance for women to manage their stress, understand nutrition, and prioritize their health.

Today, Bernadeia’s diet contains much less salt and sugar, and she’s following the guidance of a dietician. 

She has been through a lot. Before her kidney disease diagnosis, she lost her grandfather, grandmother, and beloved husband, all within two-year intervals. After enduring so many hardships, she cites her continued work in national and local education, her healthy children, and her much-adored grandsons as the reasons she keeps going.
Facing uncertainty and trying to remain steady takes effort. She says, “When I get a little depressed, I tell myself, but you’re living, and life is for the living. I have reasons to live and things to do.” 

As she marks time waiting for a kidney, she’s moving forward to help others. And one thing is clear: when Bernadeia Johnson focuses on something within her control, action will follow.