A grandiose adventure: Asheville author explores life with Type 1 diabetes

Based on a true story: Just like her title character in The Grandiose Adventures of Suzi B and Spot, local author SuzinBean also has a gray pug (named LilianPetunia, not Spot) and Type 1 diabetes. Max Cooper

SuzinBean Sweeney spies a familiar fear in her patient’s eyes as the little girl shifts uncomfortably in her chair. It’s the same look a 12-year-old Sweeney wore herself back in 1984, after she ate some cookie dough and wound up in a Florida hospital.

“You just wait till that insulin gets in you — you’re going to feel so much better,” promises Sweeney.

She’s speaking not just as a phlebotomist at Mission Health, where she zeroes in on veins, takes blood and administers shots, but as someone who lives with Type 1 diabetes.

“I just want them to feel cool and know they’re tough,” says Sweeney. To that end, she recently wrote and illustrated a children’s book about what it means to live with the chronic disease.

The Grandiose Adventures of Suzi B & Spot tells the story of 10-year-old Suzi B, newly diagnosed with Type 1 diabetes, and her pug, Spot. What began as a 20-page story and a series of journal illustrations, Sweeney explains, soon grew into a 60-page children's book as the author tried to cover the entire journey from symptoms to diagnosis and acceptance of the disease. That more comprehensive approach was essential, she maintains, because “Diabetes doesn’t care who you are."

Out of balance

It doesn’t matter if you’re overweight or underweight, young or old, active or a couch potato. And neither family history nor genetics necessarily plays a role in or predicts whether someone will have Type 1 diabetes, which accounts for roughly 5 percent of all diabetes cases in the United States, the American Diabetes Association reports. The cause is unknown, though people do inherit risk factors.

"Diabetes is the body's inability to metabolize sugars normally," says Dr. Stephen Weinrib, an Asheville endocrinologist. But the two main forms of the disease, he continues, are fundamentally different. "In Type 1, the body just doesn't make insulin; in Type 2, the body makes insulin, but it can't overcome the insulin resistance or inefficiency the body has in handling glucose."

In the human body, glucose and insulin work in tandem to keep sugar levels stable and the body functioning. Glucose comes from food; the pancreas produces insulin, a hormone responsible for delivering the glucose.

In a normally functioning body, insulin enables glucose to enter cells, giving various organs the energy they need to work. But in diabetes cases, that sugar simply stays in the blood, causing glucose deprivation that damages organs. To counteract the deficiency, people with Type 1 diabetes must periodically administer insulin throughout the day.

Don’t expect perfection

Pointing to an illustration of her curly-haired heroine giving herself her first insulin shot at the doctor's office, Sweeney says that tracking sugar levels and maintaining awareness must be "constant — you cannot let up for any second of the day."

The author learned that lesson the hard way four years ago. She was driving to Knoxville to visit her family when she felt a “sugar low.” That meant she had too much insulin in her blood and not enough sugar. Thinking she could make it to Newport, Tenn., Sweeney continued driving the winding stretch of Interstate 40 near the Pigeon River Gorge. But then things began to get hazy.

"I heard the rumble, and my windshield was crushed in," she recalls. At the time, she thought a rock had fallen on her car. But as she found out later, "I had gotten up to about 50 mph and flipped my Jeep Cherokee sideways one time.”

At Mission Hospital, a doctor showed Sweeney the X-ray revealing a severely compromised spinal column. Then he gave her more bad news. "He said there was a 50-50 chance that I would walk again," says Sweeney. After a pause, she adds, "But here I am."

Since then, Sweeney has tried to be more careful about checking her sugar levels and taking her insulin. Still, she doesn’t claim to be "a perfect diabetic," and according to Weinrib, who is Sweeney's endocrinologist, there's no such thing.

"It’s a tough disease, and I try not to talk about good and bad days,” notes Weinrib, who edited Sweeney’s book for medical accuracy. “Instead, with my patients, I like to talk about 'more desirable' and 'less desirable.' You don’t expect perfection.”

That lesson, stresses Sweeney, is an important one for people newly diagnosed with Type 1 diabetes. It's one of the reasons she’s recently gotten involved with a new diabetes group in Asheville.

Dispelling the myths

When Jackie Steward’s son, Michael, was diagnosed with Type 1 diabetes, she knew things would be different, but she didn’t realize how discouraging it could be.

“There are so many days when this disease knocks you off your feet and you feel powerless. No matter how many times my son checks his blood-sugar levels and takes his insulin, there's always that unpredictable element," she explains. "Surprises happen, whether it's sugar levels being surprisingly high or low. You can feel like you were making the best effort, doing everything the books say, and you still don't get the results you think you deserve. It's this feeling that you are not in control — [the disease] is in control.”

At a regional diabetes conference two years ago, Steward spoke with the director of the Charlotte Chapter of JDRF, a New York-based nonprofit that funds diabetes research. The encounter inspired Steward to establish a JDRF presence in Asheville.

With help from the Charlotte office, Steward held the first gathering at her home last fall; people from 10 other families attended. Today, the local database includes about 105 families, she reports.

The group, says Steward, brings together families dealing with the disease and helps kids and teens connect with other "T1Ds." On Oct. 7, the Asheville group will hold its first fundraising walk (see box, “Walking for the Cause”).

But these walks aren't just about raising money for Type 1 diabetes research, notes Kelly Vasta, development manager for JDRF's Greater Western Carolinas Chapter.

"We don't charge a registration fee,” she explains. “Obviously we encourage fundraising, but we really believe in getting the message out about Type 1 diabetes. It helps to dispel the myths. Type 1 is not the same as T2; the person with Type 1 diabetes didn’t get it because they ate too many cookies."

A journey toward acceptance

Groups and events like these can be invaluable, especially for kids, notes Weinrib.

“There’s a certain emotional burden that comes with getting diabetes early in life," he says. "And what happens when you go to the doctor? You walk in, they put you on the scale, tell you you’ve gained too much weight, or you haven’t gained enough. They tell you you’re not checking your sugars enough and you’re not being a healthy eater, but you’re just being a normal kid eater."

It's a burden that Sweeney remembers all too well.

"When I was first diagnosed, I thought it meant 'No sugar. No sugar. Eat this. Do that.' All of it felt very regimented. I felt like they stole everything delicious, and it made me angry," she recalls.

In her book, all those feelings are part of Suzi B's journey toward acceptance. In many ways, Suzi B is Sweeney. Both have a pug, curly red hair and rectangular glasses. More importantly, says Sweeney, they have the same quirky imagination and spunk.

"I tell kids that this is my story, but I had to change it a little bit," she reveals.

There's no mention of the car wreck four years ago, for example. And in place of Suzi’s bracelet, Sweeney sports a tattoo on her right wrist: the word “diabetic” arcing over the medical symbol for the disease.

Nearly two years in the making, Sweeney’s book has been accepted by local publisher Grateful Steps. The nonprofit, which solicits donations to cover printing costs, hopes to release The Grandiose Adventures of Suzi B & Spot next month (see box, “Walking for the Cause”).

Sweeney hopes her book will make more people aware of the disease — and more kids feel good about themselves.

"When I introduce myself, I say, 'Hi, my name is SuzinBean Sweeney; I'm creative, cute and sweet.' It would be so cool if kids could do that, too, and just let people know they have diabetes," she observes. “This disease is a really important piece of these kids — and of me.”

Caitlin Byrd can be reached at cbyrd@mountainx.com, or at 251-1333, ext. 140.