‘My disease and my art are both a part of me’

CNN
CNN

(CNN) — Instead of using paint and a brush, I put lipstick on my mouth and kiss the canvas to paint my pictures. A lot of folks think this is rather interesting.

As if it wasn’t enough to find such a strange way of making a living, I also have found a strange way of actually living. A way that is shared with many others, yet still considered a rarity in this world of so very many people.

I live as a cyborg … with an insulin pump, that is.

I have type 1 diabetes — not through any fault of my own, as it is an autoimmune disease. Basically, my body decided to destroy the cells in my pancreas that produce insulin. If I were to inject more of these cells into my body….they too would be eliminated.

So, I must inject insulin directly into my body. What is insulin? It’s basically the gatekeeper that opens the door of a cell to let glucose inside so that it may be turned into energy. Fuel for the body. Without it, the body has nothing to run off of, no petrol.

So, no matter how well I take care of myself, I will have to inject my body with insulin until the day I die … or until they find a cure.

Technology is making incredible advances every day. Right now, I wear an insulin pump. I am hooked up to a machine that helps keep me alive by injecting insulin 24 hours a day.

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I feel that I spend a lot of time explaining to others what type 1 diabetes actually is. I’m OK with that. I didn’t know much about it when I was diagnosed at age 18. All I could remember was something about insulin and … wait … “Steel Magnolias.” Boy, that was a scary thought.

In truth, it is a very misunderstood disease. I remember one instance in college when I went to the disabilities office for counseling. I had been ill and missed some classes. Some of the professors didn’t understand why I was so sick and were taking points off for low attendance. A minor cold had sent my blood sugar levels on a roller coaster ride.

There was a middle-aged woman at the front desk of the disabilities office when I arrived and I explained to her my situation. Her reply was simply, “Diabetes … don’t you just have to take insulin and not eat candy bars?”

Freshly diagnosed with a chronic disease, off to college on my own for the first time, and about to fail half of my classes because a cold almost put me in the hospital … I couldn’t think of a single thing to say to her. I just walked out the door. Besides, it was “just” diabetes I was having a problem with.

Diabetes is considered a “hidden” disability, but it’s very visible to me. Every decision of every moment of every day, I have to take this disease into consideration.

When most people think of diabetes, they think of controlling sugar intake, but it’s really carbs and protein and food in general — and stress and sleep and exercise and medications and the weather and excitement and anxiety and sex and alcohol and hormones and infusion sites and finger pricks and numbers that do not make any sense and highs and lows and muscle cramps and nausea and being hooked up to a machine all the time and remembering to take all past and future factors into consideration and timing everything perfectly.

And when you get it wrong, trying not to blame yourself, because depression is bad for your blood sugars too.

How do I handle it? Honestly, there is no trick, I just … deal with it. And that seems to be working all right for me.

Don’t get me wrong. Sometimes it’s hard … sometimes it’s damn hard. It can be exhausting, but it’s just something I have to do, and I’m going to let it affect my creative process as little as possible. And a sense of humor — that helps too.

I have been diabetic for 14 years, but I have always been an artist. This disease does not define me — if anything, it forces me to take better care of myself and to be more self-aware.

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There are times when I get in the zone when painting, and my disease takes the back burner, and it doesn’t take long for it to rear its ugly head again. But, I’m also a bit stubborn and am not going to let some stupid rotten pancreas stop me from doing what I want to do … even if what I want to do right now is make out with canvas.

So I take every chance I get to join these two powerful forces in my life: type 1 diabetes and making art. I try to donate artwork and prints to raise funds for diabetes research, and I talk about it every chance I get.

My disease and my art are both a part of me, but I have to respect them. They both have their place in my life but don’t have to control each other. Even sometimes when they interfere with one another, I try not to make a big deal of it. No need to beat myself up. Make a joke, laugh about it, and get back to work.

I had the opportunity to be on Conan O’Brien’s show a while back, and he was kind enough to let me talk a little about the disease I live with. I said a few words about it and flashed my pretty pink pump to the crowd before moving on to my “painting” skills.

After the show aired I received so much traffic to my website that it crashed. It was a terrible pain but also an amazing compliment. As the e-mails began coming through, I was in awe. So many people had such wonderful things to say about my work.

Even more wonderful were the people that reached out to tell me that they had been inspired by my talking about my little ole insulin pump. There were kids that were so excited to see someone on TV that had a pump, just like them. And adults saying they were going to start wearing their pumps on their outside of their clothing and not try so hard to hide their disease.

My popularity as an artist has given me the opportunity to speak about something that is very important to me. I am extremely grateful for this and can only hope that more people can find some strange sort of inspiration from it.

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