by Art Levy
Updated 10 months ago
The level of guilt that I feel — as a mother with a disease — is profound. My daughter watches me struggle with diabetes. She experiences the highs and lows of the disease, and it forces her to be much more mature than she should be at 10. That is the mourning that I often feel in my heart. But, at the same time, watching mommy with a disease has given her such a beautiful respect and sensitivity to people who are hurting.
Standing on a stage in a swimsuit is very not normal. But what I learned after the fact when I was a judge at Miss America that I wish I had known back when I was a contestant is that the judging of the woman who is standing before you in a swimsuit has nothing to do with the swimsuit. It has everything to do with how she can command the audience when stripped away of everything that’s convenient to her.
I met one of the local TV news reporters in a McDonalds and I think I was about 10. It was Gayle Sierens. I went up to her and said, ‘Oh, you are on the news!’ She was just so sweet and kind to me. I left that encounter thinking to myself, ‘That’s what I’m going to do. I’m going to be a TV news reporter.’
On my last day as Miss America, I rode in a parade that’s legendary in Atlantic City, the shoe parade. People all along the parade route waved at me and held up insulin pumps and they had signs saying, ‘I’m like you.’ That’s the most beautiful picture I keep in my mind.
Our lack of progressiveness in some of our statewide policies is hurting people with diabetes and other diseases. I’m not making a judgment about anybody, but I would hope in the future that we’ll make decisions that would benefit more of the citizens of Florida, especially those living with chronic illnesses. Our decision to not expand Medicaid has really hurt a lot of people.
At Bringing Science Home, (a medical research group Johnson heads), we’ve taken a social ecological view of life with diabetes. What I mean by that is at the core is the person with the disease, but there are these concentric circles that go around the person: Immediate family, close friends, business associates. We started working on that second-tier circle, looking at parents and the stress they experience around caring for their young person with diabetes and how that fractures families. And we’re also looking at romantic relationships — spouses, partners of the individual with disease — and how they feel often isolated and alone.
When it came down to it, my goal was to get on the Miss America stage and be in the top five because the top five women would be interviewed and got to hold the microphone on national television. I wanted to talk about living with Type 1 diabetes and how that was OK and that discrimination against anyone who has something different about them is wrong.
I have to calculate how many carbohydrates are in each meal, how much insulin I’ll need, how much fat is in the meal because that determines how long the meal will affect my body. There are many elements of eating that make it not fun. That might be one of the most unfortunate parts of life with diabetes, especially in our food-obsessed culture.
Everything crosses your mind when you are diagnosed with a chronic, lifelong illness, so I thought about how could I end it all. At times, the pain and the frustration seemed too much to handle.
I’m so grateful for my early years of learning to depend on my faith because I think that was the most important element in helping me see my way through the darkness of depression and feeling like everything was torn away.
We’re Disney lovers. We go there frequently, especially in spring and fall. The holidays are unmatched there. We’re not crazy. We don’t go in the summer.
I was in a local preliminary pageant, Miss Sarasota. I was a student at USF at the time. They called my name as the first runner up and instead of stepping forward, I fell backward. Another young woman caught me and they took me off the stage, and that’s when my family took me to the emergency room. After I was diagnosed with Type 1 diabetes, I was forced to understand who I was with this disease. It was very difficult to feel frail, to feel broken in so many ways.
When I was Miss America, I never cut a ribbon to open an establishment or anything like that. I spent 365 days speaking before health care audiences — patients and professionals. The people I met influenced me and made me want to do something where I was giving back to the health and well being of others in a bigger way than I thought I was prepared to do at that point. That’s when I altered my plan from becoming a journalist taking the ‘Good Morning America’ route to going back to school and studying public health.
You can always make strides toward delaying or preventing. It’s proven that if you lose between 5% and 7% of your body weight and you walk 30 minutes a day, you can prevent the progression of diabetes by up to 58%.