![]() Leighton Rockafellow Jr., 26, trekking along the Mekong Delta in Vietnam. Rockafellow was diagnosed with insulin-dependent diabetes at age 14. Amanda Petran Photography
More Photos (2):
BENSON HOSPITAL RESPIRATORY THERAPIST Health Care RLM Services, Inc. Orthopedic Assistant-CMA Sales and Marketing Ever-Ready Glass Glass Sales Accentcover story
Meet three outstanding young folksThey've pushed past obstacles
Arizona Daily Star
Tucson, Arizona | Published: 05.25.2008
Holly Hitchcock twitches and makes shushing sounds at odd moments. Tourette's syndrome is a tough load to haul for a 14-year-old.
Rodney Zinyemba was just 14 when he fled his homeland of Zimbabwe two years ago. Fear had been his and his mother's daily companion. When they moved to Tucson, he had to deal with new cultures, new friends and a new world.
Leighton Rockafellow Jr. was 14 when he was diagnosed with insulin-dependent diabetes 12 years ago. At first, he kept it a secret from his friends and felt that the disease had snatched the meaning of life from him.
Three young people wrestling with life-changing conditions.
Yet these three faced the struggles, and all are going out in the world as ambassadors, resolving to define themselves not by their adversity or medical condition, but by their ability to speak out.
— Rosalie Robles Crowe
"Ride on! Rough-shod if need be, smooth-shod if that will do, but ride on! Ride on over all obstacles, and win the race!" — "David Copperfield," by Charles Dickens
Leighton Rockafellow Jr., Holly Hitchcock and Rodney Zinyemba are three young people who easily could give in to the obstacles life has tossed in their paths. Instead, they have coped. More than that, they have looked at the obstacles and pushed them aside. • It is as if they have taken Charles Dickens' words from "David Copperfield" and willed them to be their own. • Here are their stories.
Most young people traveling around the world cram a few clothes in a backpack and let the world take them by surprise.
Leighton Rockafellow Jr., 26, doesn't have that luxury.
He has insulin-dependent diabetes, a life-threatening disease if not treated properly. Travel means planning ahead to him.
He and his fiancee, Amanda Petran, left in December to see 11 countries in seven months. They've used local transportation and a minimum of luggage to trek through South America, Southeast Asia, India, Turkey and Greece before heading back to Tucson at the end of July.
The biggest necessity for this adventure: enough medicine and syringes to see him through the trip.
His insulin, syringes, glucose tabs, ice packs, emergency glucagon kits, doctor's letters, extra prescriptions and emergency phone numbers take up half of his 40-pound backpack.
He's not worried. The 2004 Arizona State University graduate, who begins law school at the University of Arizona this fall, took his first extended trip after graduating from college.
"I crammed 3 1/2 months worth of medical supplies into my small backpack along with four changes of clothes and a sleeping bag and headed off," Rockafellow wrote in an e-mail from Southeast Asia.
His healthy attitude and no-holds-barred lifestyle have won him the attention of the National Diabetes Association, which featured him on the May cover of its monthly magazine, Diabetes Forecast. He looks healthy and happy, the mountains of Patagonia, Chile, looming behind him.
"I feel proud to know that I have not let diabetes keep me from doing the things I love," he told the magazine. "Such as hiking the Inca Trail in Peru or sailing through the fjords and glaciers of Patagonia."
Traveling with diabetes wasn't a challenge, he wrote to the Star. It just takes extra planning.
"Diabetes is what you make of it. It can control as much of your life as you want.
"Having diabetes forces me to keep a healthy lifestyle, forces me to regulate my diet and take insulin. Controlling my blood sugar is the most important task I face every day.
"Yet, in spite all of this, diabetes does not run my life."
Rockafellow was 14 when he was diagnosed with the disease — "old enough to completely understand the gravity" of his situation, he said.
"I was devastated to think that just one week before, I was a regular, normal eighth-grader worried about girls, friends and high school," Rockafellow wrote. "Now I was a diabetic."
A three-day stay at Tucson Medical Center taught him how to regulate diabetes with diet, but the teen saw it as a reminder that life as he knew it was gone. He hated it.
"I just wanted to get back to school and continue my life," he wrote.
"I hid from the disease . . . always took shots in seclusion. I felt different, like an outcast from humanity."
All that changed when his parents sent him to Camp AZDA in Prescott, a camp for diabetic kids ages 6 to 16.
"Suddenly, for one week, I was surrounded by hundreds of people in my exact same situation." It was an eye-opener, he said.
"I was not alone," he discovered. And, what's more, "I should not hide from diabetes. I should be proud."
From then on, his attitude changed.
"I stopped seeing it as a disease and instead saw it as simply a new habit. Most people shower and brush their teeth every day. I had one extra step — shots of insulin."
Rockafellow doesn't see diabetes as a cross to bear. In fact, he's proud to say he has it.
"People think I'm crazy when I tell them I'm proud to have diabetes," Rockafellow wrote in his e-mail, "but they're not on the cover of a magazine."
Two years ago, Rodney Zinyemba and his mother, Edina Zinyemba, lived in fear in their native Zimbabwe, which suffers under the oppressive dictatorship of Robert Mugabe.
Now, the 16-year-old Palo Verde High School student and his mother are safely settled into their Tucson apartment, and Rodney is one of 12 ambassadors from the Old Pueblo participating in the American-Israel Friendship League's annual youth exchange program, which will bring him to Israel, New York City and Washington, D.C.
"My mother was arrested for her work in a non-governmental organization; she was innocent of any wrongdoing," Rodney wrote in the essay to the American-Israel Friendship League in Tucson that won him his ambassadorship.
Edina was a human rights coordinator for the National Constitutional Assembly in Zimbabwe when she was arrested. The political situation was such that each moment brought uncertainty and fear.
"It is hard to know what will happen in a country that thinks you have done something wrong even when all you've done is push for (human rights) benefits for the people," Edina said.
"When you find yourself in this situation, having to leave all that you had, your home, it is hard."
Hard, but necessary. And Rodney knows the gravity of what they did, and what a huge difference the move has made in his life.
He was born in a country "where one's freedom was very limited. My parents wanted freedom for their children. Under such a totalitarian regime, a person cannot express individuality for fear of imprisonment.
"Being a youth ambassador is a confirmation of personal liberty. . . . I will be an ambassador of gratitude as a person who fully appreciates the difference between having the freedom to speak and be heard versus being silenced with the iron hand of oppression," he wrote.
Those aren't the only differences Rodney's experienced since moving to Tucson.
He has had the difficult task of making new friends and coping with huge cultural differences. He speaks English all day, reserving his native Shono for home.
He once wore uniforms and attended a boarding school. Now he attends a public high school and dons street clothes. His school year in Zimbabwe was three months of classes followed by three months holiday. Now it's nine months straight.
They've traded a tropical climate where the relative humidity plunges to about 50 percent in August and September for a desert that yearns for 50-plus percent humidity in midsummer because that's the harbinger of rain.
Even the seasons are different. Zimbabwe is south of the equator, so, while Tucson now is bracing for summer's approach, winter is approaching in Zimbabwe.
Of the move, Rodney says he was happy because it meant he could be closer to his brother, Tendai, who works in a New Orleans hospital, and sister, Tatenda, who attends Purdue University (his oldest sister, Pamela, remains in Zimbabwe with her husband). But "part of me was not happy to leave my grandparents," he said.
"He is coping with a new culture, having to maintain grades," Edina said of Rodney.
"But the good thing is that America is America. There is room for success."
Holly Hitchcock is like any other 14-year-old. Except she sometimes grimaces uncontrollably.
Jerks her neck frequently.
Twitches her face often, and once in a while will let out an audible shushing sound.
Holly has Tourette's syndrome.
Yet she regularly speaks to groups about her condition.
She lobbies politicians about Tourette's.
And she's considering an acting career.
Tourette's syndrome has not defeated Holly Hitchcock, though there was a time it threatened to.
She was diagnosed with the neurological disorder at age 4. It shows up in early childhood or adolescence — before age 18 — and causes involuntary and uncontrollable physical and vocal tics.
"It's frustrating to the point of wanting to give up," Holly's dad, Matt Hitchcock, said of the condition. "But children don't have a choice. They can't give up."
The affliction is different for each patient. TS varies from mild to severe and can have many associated conditions, among them attention-deficit disorder, obsessive-compulsive behavior, oppositional (defiance) disorder and learning disabilities.
At first, Holly's condition was mild, but as she got older, it worsened.
Today, "mine is not extremely severe, but it's not as mild as others'," Holly said. "It's kind of intermediate."
In fifth grade, Holly's classmates began mocking and teasing her. When it reached the point that Holly no longer wanted to go to school, her parents opted for home schooling.
Instead of withdrawing from the world, Holly took charge of her life. She began learning all she could about her condition and joined the Tucson chapter of the national Tourette Syndrome Association "to learn more, to reach out to others with the condition and to create public awareness," Holly said.
As Arizona's national association youth ambassador, Holly attended a four-day conference and training session in Washington, D.C., in April and used the opportunity to lobby Arizona's congressional delegation on behalf of legislation that would further research into TS and help those who have it.
But there's another reason, she said.
"It's so much easier with kids with Tourette's syndrome if their peers know what it is they have," she said. "Maybe they won't make fun of them so much — or at all."
One of the bills is the Individuals with Disabilities Education Act (IDEA), which would change the categorization of Tourette's syndrome from mental illness to medical condition.
"Tourette's is a neurological disorder, so why is it listed as a mental illness?" Holly asks.
As part of her youth ambassadorship, Holly addressed Martie Fankhauser's class at the University of Arizona College of Pharmacy earlier this month.
"The students were just amazed at her ability to communicate and to share her experience, and to respond to all kinds of questions," said Fankhauser, a clinical professor in the school.
"They had admiration for her, and also they can now see a real person who has Tourette's, and they aren't afraid. It decreased the barriers," she said, adding that many of the students decided after Holly's talk to become involved in fundraising and raising awareness of TS. "I want Holly to come back every year and talk to students."
Confidence has been a byproduct of the past three years.
When she was in elementary school, "I used to be very shy, hesitant about making new friends and meeting new people because I was afraid they'd mock me," she said.
"But now I've accepted myself. I have Tourette's syndrome, but that doesn't bother me. I hope it doesn't bother anyone else.
"You only limit yourself. I can be what I want to be. I have accepted myself."
Tourette's syndrome
Tourette's syndrome is named for the French neuropsychiatrist Georges Gilles de la Tourette, who successfully assessed the condition in the late 1800s.
Holly Hitchcock, the national Tourette Syndrome Association's youth ambassador from Arizona, says there are an estimated 200,000 people in the U.S. diagnosed with the condition.
But there are so many undiagnosed cases that that number more accurately could be as high as 2 million, Hitchcock said.
For more information about the condition or to get help in coping with it, call the Tucson TSA Chapter, 620-2288. Additional information is available at www.tsa-usa.org.
|
|