Every morning when Nicole Johnson wakes up she immediately checks her blood sugar to make sure it isn’t low.
When she was 19, Johnson was diagnosed with Type I diabetes while attending USF. Though her morning routine may differ from others, she eventually used her condition to advocate for others who endure the same routine.
“I was the only person in my family with diabetes and we didn’t have knowledge of it when I was diagnosed,” Johnson said. “It felt like the end of the world to me. I was urged to drop out of school, to change my career interests, to not pursue the performance and pageants that I was interested in. It felt like the advice that I had been given was to stop living.”
But she didn’t. Even before becoming the executive director of USF’s Bringing Science Home program, which is geared toward helping people with chronic diseases, primarily diabetes, live their lives optimistically. Johnson was crowned Miss America in 1999.
On being Miss America
Johnson recalls fellow pageant coaches and candidates doubting her ability to win because they knew she had diabetes.
“Even up until two hours before the finals, people were telling me that ‘They’re never going to pick you. You have something wrong with you. You have a condition. You’re not perfect and so you can’t be chosen,'” Johnson said. “That made me angrier and more determined.”
Despite the doubts of her peers, Johnson won the title of Miss America 1999 and, according to Johnson, the reign of Miss America was not as “glamorous and magical” as she expected.
“I was on a plane every 24 hours somewhere, sometimes less than that,” she said. “I never had a day off. I went home two weeks before I gave up the title and that was the first time that I had time to do nothing.”
Though Johnson was 24 and paying her own bills at the time she won, a Miss America chaperone followed her everywhere she went. She said she was constantly with a member of the organization, but still felt very isolated.
Even trips to buy deodorant or personal items could not be taken alone, she didn’t have a car and had to be driven anywhere she wanted to go. Johnson appreciated any alone time she could get.
“(I) would go to Target (with my best friend) and that was awesome,” Johnson said. “It sounds so strange. You’re Miss America and you’re in a baseball hat, so beyond thrilled to be at Target because you could go with your girlfriend down the aisle getting anything you want without some strange client of that city following you.”
As a public figure, Johnson would travel and give speeches. Prior to speaking she would hide out in a bathroom stall just for that small time of privacy away from the public eye.
“I would sit there and have my notes for my speech and write what I wanted to say in the bathroom. It was the only place that no one could get me,” Johnson said. “People caught on. They would slide pictures under the door for me to sign. I would say, ‘Let me come out and wash my hands, and I’ll take care of it in a few minutes. Meet me outside.’ It was very bizarre.”
On being a Bull
According to her website, Johnson currently holds a master’s in journalism and public health from Regent University in Virginia and is now a USF doctoral student in public health.
Johnson said that her health care team told her that she wouldn’t be smart enough to graduate from college, that her body wouldn’t handle pregnancy and that being a journalist would be impossible because of the chaotic schedule of school deadlines and late nights of doing homework.
But she is proving them wrong on all counts – from being a CBN reporter in 1996 to raising her 5-year-old daughter.
On being an executive director
In 2010, a $5.66 million gift was secured in part by USF President Judy Genshaft for Bringing Science Home, of which Johnson is the executive director.
She said it is a project that will investigate how to help those with chronic diseases like diabetes.
“We are looking at parents and how do they cope with their child’s chronic condition of diabetes,” Johnson said. “The parents often say to me that they want to say to their child, ‘How was your day?’ instead of, ‘What was your blood sugar at lunch?’ When Mom or Dad is making sure that the child is surviving, the child perceives it as, ‘You only care about my blood sugar? Do you care about me? I’m annoyed with my diabetes and now you’re annoying me about my diabetes!'”
To learn about parents’ perceptions of their child’s disorders, a research study is being conducted where Bringing Science Home recruits parents who have a child with Type 1 diabetes in order to gain an understanding of how people with diabetes live.
Johnson said that the program will also focus on how college students are coping with diabetes. Students with Diabetes, a group created by Bringing Science Home, welcomes those with a chronic disease or who have loved ones with a chronic disease to come together during monthly meetings and discuss their thoughts on the subject.
“It is a social connection point for students who live with diabetes, are interested in diabetes or care about people with diabetes,” Johnson said. “They can come and learn about certain topics like drinking with diabetes or relationships with diabetes.”
Johnson said she chose to go back to USF after meeting College of Public Health Dean Donna Petersen, when she realized the strong “commitment and leadership” that the program possesses.
“I believe that they are providing me with the information that I need to take the next steps in life,” Johnson said, “and that is powerful.”
Johnson said that other than graduating in December 2012 and seeing her program succeed, she does not have any concrete plans for the future.
While she pushes through her hectic schedule, Johnson can never forget one element of her life: her diabetes.
“I come here (to USF) every day and I’m at meetings all over the place, helping run this program,” Johnson said. “At the same time, I’m trying to make sure that I stay alive. I live with diabetes and that’s serious. If I don’t take my medication or test my blood sugar, I would die. That’s the amazing thing.”