Living with Diabetes: One Teen's Story


Who says exercise can’t be fun? Grace Emery jumps on her mini-trampoline when her blood sugar gets too high.

Grace Emery loves jumping on her mini-trampoline but already dreams of law school.

She makes plans for a high-school trip but wears a sweatshirt from George Washington University.

She still gets squeamish just looking at her own veins but knows too much about grown-up fears.

Grace is 17, and she has Type I diabetes.

So she fits a chronic disease, one that demands attention and energy every day, into her life, around the tennis team and her fencing class and the sailing on Lake Tarpon and the once-in-a-lifetime trip to see Barack Obama become president.

“It’s a huge part of my life,” Grace said of her diabetes, “But I don’t let it limit what I can and can’t do.”

So yes, Grace went to see the inauguration with a teen leadership group she has belonged to for years. Just like all the other kids, she partied at a youth Inaugural Ball, heard Colin Powell speak, and watched the ceremony by the reflecting pool.

She just carried extras with her: a backpack with snacks and insulin pens. A stash of extra insulin pens back at the hotel, just in case.

Sometimes it’s hard. There are no days off, no coffee breaks, no rest stops. When you have diabetes, you can’t escape it.

“Even when you try to forget about it, you don’t,” she said. “It’s always, always, always, always there.”

So you just go on with it.

Grace and her mom, Mary Ellen, work on fixing healthy meals to help keep Grace’s diabetes under control.

Growing up in north Pinellas County, Grace lived an idyllic childhood: sailing on Lake Tarpon, playing volleyball, enrolling at Berkeley Preparatory School.

Everything changed when Grace was 14.

She didn’t realize anything serious was wrong. She got her blood work done for a temporary condition and the results were puzzling. Her blood sugar was sky-high. Grace got on the internet herself and looked up diabetes, and saw all the symptoms she had. She’d lost 15 pounds for no reason. She was always thirsty and always running to the bathroom.

Dr. Frank Diamond, a pediatrics professor with the USF College of Medicine, gave her the official diagnosis.

It was two days before Christmas. Her mother still cries when she thinks about it.

“It was just devastating,” said Mary Ellen Emery. “You just want to pull the sheets over your head, and then you think, you have to be the mom, and you go do the mom thing. But it’s not an easy diagnosis.”

The family had planned a holiday ski trip. Instead, Grace spent winter break learning about diabetes: how to change her diet, how to check her blood sugar, how to give herself injections.

“She’s a survivor,” her mom said.

It was an adjustment for the rest of the family too. Grace’s father, Ken, can no longer bring home bagels on a whim. Mary Ellen makes an effort not to focus family events and celebrations around meals. Ken helps Grace plan her injection schedule for trips.

“It’s what life is,” Mary Ellen said. “It’s not what we were bargaining for. But with love and faith and prayer and hope, you do it. Grace does a great job.”

Grace relies on the support of her parents, Ken and Mary Ellen Emery, to help her with the challenges of diabetes.

The injections were easier than Grace thought they would be. She was afraid she’d have to stick needles in her veins. Instead, she uses insulin pens, with short needles she injects directly into her skin, most often in her stomach or thigh, about five times a day.

Each day, Grace takes two kinds of insulin: two shots of a long-acting insulin to keep her blood sugar steady throughout the day, 23 mg. in the morning, 23 mg. at night.

She checks her blood sugar before school and has about five units of her fast-acting insulin just before breakfast.

Then it’s on to school, where she checks her blood sugar again and takes more insulin just before lunch. She tries to decide what she’ll eat first, so she’ll know how much insulin to take. She always carries snacks with her; her teachers know she has diabetes and don’t mind if she eats during class.

After school, it’s on to tennis practice or home. Sometimes, she’ll take more insulin.

Grace checks her sugar again just before dinner, and takes more insulin – usually six to eight units — just before she eats.

Then she checks a final time before bed.

A few times each month, her sugar drops too low during the night.

“I wake up in a cold sweat,” she said. Then she comes downstairs and has something to eat.

Last year, Grace’s orderly routine shattered. She stopped taking her insulin. It’s still hard for her to explain why.

“It was just a phase,” she said. “For a week, I was lazy.”

What began as rebellion became something worse. After two weeks of not taking her insulin, she found she had lost 15 pounds.

So she kept skipping it – for three or four months. She lied about taking her shots, so Mary Ellen began insisting on watching her. Then she started pretending to inject herself, using the pen without delivering insulin. They argued about trust, about independence.

“It became constant monitoring,” Mary Ellen recalled. “It was very hard, and very, very scary.”

What Grace did isn’t unusual for diabetic teen girls. Many struggle to cope with managing a disease that requires compulsive attention to diet while navigating the body image worries of growing up. Dr. Diamond had warned Grace and Mary Ellen about deliberate weight loss, sometimes called “diabulimia,” when she was first diagnosed.

Grace had sworn never to try it.

Skipping insulin doses can cause weight loss because the body, unable to break down sugar without insulin, excretes it in urine. But it is dangerous – and Grace found that out firsthand. Without her insulin, her blood sugar levels soared. One day her vision suddenly became blurry. She couldn’t see anything clearly, not even objects a few feet away.

“I really couldn’t see,” she said. “I thought I was going blind.”

She knew she had to get her blood sugar back under control.

Grace had to visit an eye specialist and wear magnifying glasses for a while, but she was lucky. She learned her lesson without doing permanent damage to her eyes.

“It’s a huge part of my life, but I don’t let it limit what I can and can’t do,” Grace Emery, 17, says of her Type I diabetes.

These days, Grace has learned to balance her diabetes with a full round of school and extracurricular activities. Exercise helps control diabetes, and Grace plays on the school tennis team and takes a fencing class. She keeps a mini-trampoline out back to jump on when her blood sugar gets high – or just for fun.

At school, she’s involved in model United Nations, a teen court program and the Chinese Club. She’s been accepted early decision at George Washington, and says she wants to be a lawyer “because that’s the best way to change the world.” Her interest in politics led to the inauguration trip with the Presidential Youth Inaugural Conference.

Still… Grace has fears about the future as well. Every child with diabetes fears the complications that can come later with the disease, she said, and she rattled off a list: “My heart, my hands, my feet.”

Her biggest worry is whether she’ll be able to have children.

But Grace tries to keep those fears in perspective. After all, if she’s afraid of the future, at least she’s spent more time thinking about what lies ahead and what her goals are. With fear comes maturity and strength.

“I try to see it as a positive,” she said.

And that’s the advice she gives to other kids who have just been diagnosed.

“You may think it’s a little scary at first,” she said. “I know I did… Be strong and believe in yourself, and know you can do it.”

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– Story by Lisa Greene, USF Health Communications
– Photos by Eric Younghans, USF Health Communications