Writing on Hope

Spike and Bodie Loy are as close as any two brothers can be. They often have the same thoughts, and they frequently finish each other’s sentences. They study and surf and go backpacking and bicycling together.

The Loys are also both diabetic, and have taken care of each other since they were little boys.

After Spike was diagnosed, Bodie--who was 5 years old at the time--practiced putting a needle in an orange so he could give his brother insulin if his parents weren’t home.

Now, Spike, 19, and Bodie, 17, have written a book, to be published a year from now by the American Diabetes Assn. The brothers’ goal in writing the book is to help children and teens deal with diabetes, and to encourage them to maintain a positive outlook about their health.

“We didn’t know what we were doing when we were growing up,” Spike said. “If we would have had this book when we were little, it would have taken away some of our anxieties.”

Spike will never forget how frightened he was on the day before Thanksgiving 12 years ago. While his classmates were making paper pilgrims and eating turkey, he was lying in a hospital bed, getting insulin shots every few hours.

“I figured I was gonna die,” Spike said. “I was really scared.”

The whole week before, he had felt tired and weak. He could barely stand up. He was really thirsty and had to go to the bathroom a lot.

His mom, Virginia, took him to the hospital, where doctors and nurses gave him blood and urine tests. They told Spike, then 7, that he had insulin-dependent diabetes.

“I was really worried that I was gonna be the different kid,” Spike said. “At elementary school, kids make fun of everybody. So I thought it was going to be my turn.”

Spike’s little brother, Bodie, was worried too. He didn’t want his brother to be sick. Would they still be able to play with their Legos and GI Joes? Could they still ride their BMX bicycles and skateboards together? Could Spike still teach him how to play chess?

But Bodie was also a little bit jealous. When Spike was in the hospital, he got to make a model aircraft carrier with his dad. And Bodie wanted to do that too.

Then, one year later, on the day after Thanksgiving, Bodie too was diagnosed with diabetes.

But looking back, Bodie said getting diabetes wasn’t “that big of a deal.”

“I just figured I’d do what my brother did,” Bodie said. “I always did what my brother did.”

And that hasn’t changed.

The boys have worked together very closely to write their book, for which they received a $1,500 advance. The contract with the American Diabetes Assn. (ADA) also guarantees royalties on books sold.

Robert Anthony, who heads up book production for the ADA, said the organization is prepared to spend as much as $100,000 to market and produce between 10,000 and 15,000 copies of the book, which he said fills a need. At present, he said, the ADA doesn’t have any guides that target children and teens.

“The attraction was that it was not only a guide for kids, but a guide by kids,” said Anthony. “Often a doctor may not have the same perspective and questions that kids do.”

The book evolved from Spike’s 1998 senior project at Nordhoff High School. His mom had been pushing him for years to write about living with diabetes, so he finally decided to do just that. He wrote about 30 pages on the disease and how he manages it at school, while playing sports and on vacation.

Then, when Spike left to attend Stanford in September, Bodie took over the project. He decided there was more to say. He wrote sections on what diabetics should eat, how to deal with doctors and what young diabetics should do when they get sick.

With a Little Help From Their Friends

Both Spike and Bodie said they want their book to provide kids and teens with practical tips on how to deal with diabetes on a day-to-day basis.

“Everything we read was real scary and sterile,” Spike said. “This book is all the positive stuff.”

The book begins with a description of diabetes, a disease in which the pancreases produces too little insulin, the hormone that allows glucose to be absorbed in cells. When glucose levels in blood become too high, diabetics experience frequent urination and thirst. Thus, to maintain a normal level of glucose, diabetics must inject themselves with insulin.

So everywhere they go, both Spike and Bodie carry around a kit, which they call “my life in a bag.” In it, they carry insulin bottles, syringes, test strips, a glucose monitor, cake frosting, granola bars, alcohol swabs and an identification card that lists emergency contacts.

In their book, the teens also wrote sections on how diabetics should handle participating in such activities as surfing, bicycle riding, backpacking, traveling and eating out. Each section gives tips for kids and teens on how to avoid getting low blood sugar and therefore risking a possible “crash,” which, in the worst case scenario, could lead to a coma, even death.

For example, in the section on surfing, the brothers advised diabetics to eat a burger or a taco before paddling out and after paddling in, put something sweet, such as frosting, in the sleeve of their wetsuit and never surf for more than an hour. They also discouraged diabetics from ever surfing alone.

The book also urges children and teens to tell everybody they are diabetic. The brothers admit that, at first, they were afraid to tell their friends. But when they realized that the kids weren’t going to tease them, they became more open and comfortable.

Spike remembers being on the playground when he was 8 with his friend Kevin, and feeling like he was going to “crash”--the term for a blood-sugar plummet. Kevin recognized that Spike was dizzy and needed help, so he walked him to the office, called Spike’s mom and fed him some caramels.

“All our friends know,” Spike said. “They are glad and eager to help. That’s the best way to go. They saved my life that one time. And they may again.”

Leading an Ordinary Life

Virginia Loy, who stayed home to raise her four children, said she always made sure all of the boys’ teachers and friends knew what to do if Spike or Bodie had low blood sugar. She also told them about her sons’ special needs, like having to sometimes eat during class or having to use the restroom frequently.

Bodie and Spike both said their classmates showed considerable understanding of their disease. And Bodie said some of his classmates were actually jealous of him, because he could snack during class.

Before Spike left for Stanford, he and his mother took two trips to the campus. They registered Spike at the office for students with disabilities, made sure he had access to a kitchen 24 hours a day and put a small refrigerator in his dorm room. And when he got to school, Spike told his roommate and new friends about diabetes, and how they could help him in case of an emergency.

“I’ve had some times when I had real low blood sugar and I almost passed out,” Spike said. “It’s just scary when you’re with people who haven’t known you your whole life.”

Spike and Bodie said their main goal with their book was to motivate diabetic children and teens to do the things they want. When Virginia Loy found out that both of her sons had diabetes, she was worried that their disease would prevent them from excelling in school or sports. But she soon realized that they just had to make some adjustments.

“We decided they were going to do everything they wanted to do, come hell or high water,” she said. “We just had to figure out how.”

And so far, they have.

In 1998, Spike graduated as the valedictorian of Nordhoff High School with a 4.3 grade-point average. During his senior year, he was the student body vice president, a national merit scholar, the student board member and the homecoming king. Now he is about to start his sophomore year at Stanford, and is hoping to conduct diabetes research in the future.

This year, Bodie is a senior at Nordhoff, holds a 4.3 grade-point average, is a national merit scholar and serves as the school’s vice president. He plays varsity soccer and has worked as an associate editor on the school newspaper. Bodie wants to pursue a career in biomedical engineering.

Both boys surf, ride motorcycles, water ski, snowboard, hike and play soccer.

Changing Attitudes, Staying Upbeat

Ojai Unified Supt. Gwen Gross said the Loy brothers “are very bright and capable, but humble.”

“The challenges they’ve experienced are sort of embedded in their spirit,” she said. “And because of that, they show a lot of compassion toward everybody. They are truly loved and respected by students and staff.”

And they are devoted to one another.

Virginia Loy said she thinks their disease brought her sons and the whole family closer together. When the boys were first diagnosed, the Loys started raising pigs on their Ojai ranch.

The “great white” pigs, as they are often called, have pancreatic cells that can be transplanted into humans, so the family raised and slaughtered the pigs, and transported the cells to a lab at UCLA. Everyone helped out, including the boys’ father, Rick, a local attorney, and older sisters Jenny, now 26, and Mary, 24. Jenny is now a writer, and Mary does diabetes research in San Diego.

“I wouldn’t wish it on anybody, but this has been a real bonding experience for our family,” Virginia said. “And I’m real tickled in the way they are giving back to the community. Now they have a tool to reach thousands of kids.”

Already, Spike and Bodie have given dozens of copies of their book to families with diabetic children, who are part of a local play group. Patty Conlan, who helped start the group, said Spike and Bodie are an inspiration to both the children and the parents.

“When their children are diagnosed, parents think, ‘Oh my God, what’s going to happen to my child?’ ” said Conlan, whose 9-year-old daughter, Bridget, was diagnosed three years ago. “But then they see these two successful boys, and there’s nothing they can’t do. It’s really motivating.”

One mother recently sent a letter to the Loys relating how the book changed the attitude of her daughter, Rebecca. Before reading the book, 6-year-old Rebecca was defiant about her illness: “I don’t have diabetes. You do!” she would tell her mother. Then, after she and her mom read the book, Rebecca started accepting the disease.

In the letter, the mother wrote, “Somehow this book spoke to her and brought her a strength and support like nothing else that had been shown or spoken to her before.”

Spike said he hopes the book will makes the lives of kids like Rebecca easier.

“You have to be a little more careful and cautious, but you have to keep upbeat,” Spike said. “We’re fairly successful, normal kids.”