Diagnosed at a routine checkup when she was 12, Rachel Heckerman hasn't let diabetes stop her from living and traveling around the world.

By Corey J. Maloney
April 30, 2020
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Prior to a routine trip to the doctor in 2007, Rachel Heckerman was a healthy 12-year-old growing up in New Jersey. She was a dancer, competing all over the state, and she loved the outdoors. So when her brother needed a physical, she decided to tag along to the doctor's office. The visit wasn’t supposed to change her life, but that’s exactly what happened.

“I was pretty skinny," Heckerman tells Health. "I think I weighed 65 pounds, according to the scale at the doctor’s office. But between dancing and being outside, I was always on the move. And I loved to eat." Back then, she did start noticing that she had to use the bathroom more frequently than usual. "But I figured it was because I was dancing every day and needed more water,” she explains.

At the doctor's office, she ended up getting a routine checkup—and when the blood work came back, it revealed she had type 1 diabetes. In fact, her blood sugar levels were very high, in the 600s, and she had to be admitted to the hospital for five days. During that time, she received treatment to get her levels under control, and she was also given a crash course in how to manage type 1 diabetes.

“I had no idea what diabetes was," she says. "The day I was diagnosed, I thought that it was my fault I got the disease.”

According to the Center for Disease Control (CDC), type 1 diabetes (previously called insulin-dependent or juvenile diabetes) is usually diagnosed in children, teens, and young adults, but it can develop at any age. The CDC estimates that nearly 1.4 million Americans over age 20 have it and take insulin to manage the condition, as well as about 187,000 children and adolescents under 20.

People with type 1 diabetes don't make their own insulin, or they make very little. Insulin is made in the pancreas; it's a hormone that enables blood sugar to enter the cells in your body, where it can be used for energy. Without insulin, blood sugar can’t get into cells, so it builds up in the bloodstream instead. High blood sugar damages the body and causes many of the symptoms and complications of diabetes, including some that can be life-threatening if not treated.

“All I wanted to do was get back to being a kid. I didn’t like the idea that someone else had to give me insulin injections, so by my third day in the hospital I was administering it myself," says Heckerman. "I wanted that control and so I tried to figure out everything I could as fast as I could.”

Having to administer insulin wasn’t the only adjustment. Four months after being diagnosed, she underwent a growth spurt and her weight doubled to 120 pounds.

"I had to relearn how to balance and move when it came to dancing," she says. "Although my dance instructors really kept an eye on me in the beginning, they didn’t go easy on me either—which I am actually extremely grateful for, looking back. They expected the same hard work from me as they did before, because I was the same person and had the same dreams. I think that helped keep me from using diabetes as an excuse to not do something. It made me realize I could still do what everyone else could.”

One of those dreams was to be a graphic designer, and after high school, Heckerman enrolled in the Fashion Institute of Technology in New York City. Following graduation, she landed a job in travel media design, creating graphics for IG stories, developing branded media content, and learning the ropes of video editing.

At first her job seemed perfect; she was able to tell stories and work in the travel industry. But after a couple of years, she started to get the itch to go out on her own and use the skills she had learned at her job to tell the stories that resonated with her.

“It had always been a dream of mine to document wildlife. My brother and I used to watch documentaries when we were kids. We’d pretend to create our own safari jeep or canoe out of pillows, and pretend we were in the documentary," she remembers. "It just kind of hit me one day while I was at my desk that I needed to do this, and I started making a plan.”

At 24, Heckerman quit the graphic design job and started looking for ways she could live in Central or South America, locations she'd visited before and loved. She found out about a tour guide position in Costa Rica, accepted the offer, and moved to the Costa Rican town of Monteverde.

Besides conducting tours, she was also teaching people about native insects and butterflies. “There was this amazing biodiversity in Monteverde where you can walk past insects that have never been identified before, "she says. "Everything had its place in this ecosystem and something about that really spoke to me.”

During her off hours, she went out to shoot footage of wildlife, learning the different ways animals moved and interacting with them through the lens of her camera. It was an amazing opportunity, she says, but one that sometimes required adjustments because of her diabetes.

“The high altitude of Monteverde made my blood sugar drop frequently, so I’d have to keep my eye on it more than if I was at home," she recounts. "Before giving a tour, I would have to make sure my blood sugar wasn’t rising or falling too quickly. Diabetes isn’t something that everyone understands, and sometimes when giving a talk to a group of people, I’d have to stop and grab a snack from my pocket. Most people were understanding, but some people looked at me like I was crazy.”

After Costa Rica, Heckerman worked in Ecuador as a tour guide at a wildlife rescue center in the rain forest. During her time in Ecuador, she met a girl who was also diabetic. “One of the things about having diabetes is that it can be isolating," she says. "It makes you lonely to have this thing that a lot of other people don’t have and don’t understand. There were times where I’d get envious of other people who just get to live without having to worry about anything diabetes-related."

"Being able to bond over how you have to manage your blood sugar while being in the Amazon rain forest was amazing," she continues. "It always gives me perspective meeting other diabetics. It makes me realize I am not the only diabetic in the world going through it.”

While in Ecuador, Heckerman also had her eye on another opportunity. She had stumbled across someone on social media who lived and worked in Antarctica and was so inspired, she applied for a similar position the same day.

“I had pretty much stopped doing any sort of graphic design, but the one big thing design school taught me was how to design my life—how to create a structure and order for the things I wanted to accomplish instead of just waiting for things to happen," she says. "It made me more proactive.”

Back home in New Jersey, as she began the process of getting a job in Antarctica, she encountered a hurdle. “The medical staff denied me at first because I had type 1 diabetes. They were worried that my blood sugar levels would get bad as the season progressed because the closer it gets to winter, flights to Antarctica become less frequent, which means less fresh food options. I sent them an email explaining that I have a lot of experience working in extreme conditions, with a less than ideal food supply, and I still felt completely confident going there.”

Waivers were signed, and Heckerman was off on another adventure—this time to spend months living and working in one of the harshest places on the planet. The experience capped a year that saw her living out her childhood dreams and designing a life where she could continue to chase new ones. “Getting to live in Antarctica was the best experience I’ve ever had. And I’m really proud to have been able to accomplish what I’ve accomplished thus far as a person with type 1 diabetes,” she says.

Heckerman is combining all the things she’s learned about the worlds of art and science. It’s been the path she’s been on since she was a young girl in New Jersey, looking out her window, wondering what was waiting beyond the limits of her backyard.

“I always wanted to do more, see more. And now, I want to be defined by what I can do," she says. "Not by what some disease says I shouldn’t.”

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