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Un-limb-ited: Amputee teens find a place to fit in with rafting trip to Green River

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Surrounded by red rock and blue sky, Nathaniel Carter smiles at his newly found feeling of inclusion as he floats down the Green River. "Other than in the hospital, this is the first time I've met others missing a limb, and it makes me feel like, hey, it's not just me," the 14-year-old says as the raft churns through the water.

From the depths of Desolation Canyon on this hot July day, it would appear that Carter and the 14 teenagers with him are like any other youth group that treks here for adventure. And in most ways Carter and his friends are normal teenagers. But in one key respect, they are unique — each is an amputee.

They have come here from around the country for the third annual Un-Limb-ited Amputee Whitewater Rafting Camp, which is sponsored by Shriners Hospital for Children.

The camp is the brainchild of Matt Lowell, a physical therapist at Shriners, who recognized that when amputees became teenagers, they often needed more intensive intervention, treatment and attention. To help fill that need, Shriners, under Lowell's direction, started a winter camp seven years ago where kids learn to ski and snowboard.

From the winter camp's success and Lowell's previous work at the University of Utah Intermountain Burn Clinic, which has run a similar camp down this same stretch of river, the Un-Limb-ited Amputee camp was born.

The six-day, 89-mile river rafting trip starts at Sand Wash, near Duchesne, and ends at Green River. The camp consists of teenagers ages 12 to 18, mostly from the Intermountain region, but guest campers from around the country are also invited. Burn Camp and Holiday Expeditions provide the river guides, gear and food, and Shriners and its donors provide direct donations to the camp, resulting in a very minimal application fee. Most times, if there is any financial need, that fee is waived.

The fact that Maj. John Wesley Powell, the first man to navigate the Green and Colorado rivers in 1869, was missing his arm from an explosion in the Civil War was not something that the organizers of the Un-Limb-ited Camp had in mind, but it has provided a great role model and an inspirational piece of history to share with the campers.

"Teaching a child to walk or use a prosthetic is not the goal. It is simply a step in the process," Lowell said. "Our goal is to get them back into life and pursing their dreams, goals and aspirations. Having them walk 10 feet down the hallway in a clinic is not life."

Marina Ivie, 23, is one of two "counselors in training" at this year's camp. Ivie lost her leg in an automobile accident near Payson nine years ago. While recovering at University Hospital, two amputees stopped by her room and talked to her about what it would be like to live with one leg. One of the amputees was a teenage boy. The other was a nurse. Seeing their success gave Ivie hope.

Last year, Ivie quickly learned the impact she could also have on other amputees when she picked up a camper from Tampa, Fla., at the airport. Ivie recalls that after introductions they sat to wait for another arrival and started talking. When the teen learned that Ivie was married and had a son she "kind of stepped back and got this look on her face and said 'Wait, you are married?' " The girl couldn't believe it. "Someone loves you and married you?" the girl asked again. And again Ivie said yes. "With your leg like that?" the girl asked. Ivie replied, "Yes, because he loves me for me and the person I am, and my leg doesn't make any difference to him."

Listening to the young girl's questions was bittersweet.

"She didn't know. She thought that she was the freak and that no one was going to like her because she wasn't the perfect model, that she didn't have everything there," Ivie recalls. "But she had more in her heart, and that is what she had to learn — she had more to give inside."

In almost every way, the campers on the Green River seem like any other teenagers trying to navigate the choppy waves of adolescence. About half have been without a limb since birth. Others have lost their limbs to accidents, cancer or, in one case, infected chickenpox. As 15-year-old Jessica Nordstrom explains, "I think I'm blessed because I was born with what I have, because if later on in life I had to get my leg amputated, I don't think I'd adapt to it as well."

What all share is that they are different — at an age when conformity is the norm. As Koyla Arnold, the oldest of the campers, explains, "When I was younger, everybody was saying, 'Oh man, you're different, you're different,' and I knew there were other amputees, but when I came in contact with Shriners, I knew I wasn't different — just unique."

Take 15 teenagers with that uniqueness in common, many of whom have never been camping or unplugged from their cell phones or iPods, mix in the grandeur of Desolation Canyon, and you have the ingredients for what campers refer to as a "life-changing experience."

After walking off the bus at the Sand Wash where the rafts are ready to load, Lucas Slusher, who had never left Ohio, simply stares at his surroundings and exclaims to the others, "I don't know about you, but I could stay here all day and look at that rock."

Each day is filled with water fights, kayaking, swimming down the river and white water rapids. Afternoon is generally some type of craft or hike. At night, everyone gathers in a circle, sometimes around a campfire, to share the highs and lows of each day. The lows tend to fade with the current, quickly banished and forgotten.

One high for all was hiking about a mile up a steep canyon to an old moonshine still. For the adults who help run the camp, it's hard to imagine a more inspiring sight than watching 15 amputees climb, many falling along the way, but continuing with perseverance until reaching the top. "I don't know if they realize it, but they are the ones that are such an inspiration to me," said Rick Coriell, a guide with Holiday Expeditions. "I don't know how else to explain it, other than it is kind of unbelievable. I'm so used to going up these canyons and just not thinking about the little things. They give me so much more than I will ever, ever, ever get or will be able to give."

After the hike back down the canyon, the campers share the humorous side of traversing life without a limb. Kristine Littlefield, 13, from Centerville, laughs while admitting that she "used to shark a lot," joking about a fabricated story of having her leg ripped off by the jaws of a shark. A collective and knowing "yeah" comes from the group.

Logan Spencer recalled how he was walking through the Walmart parking lot when a car drove past him, and he fell down, took his leg off and started screaming. A chorus of "Oh, that's bad" comes from the group amid the laughter. Daniellia Jimenez talked about her leg falling off while doing cartwheels and a couple of campers add "Yeah, mine did, too."

At night, under the stars, there are more serious discussions. Questions about myoelectric arms, limb transplants, phantom pains and residual limb pains. Several campers talked about what it feels like when people stare at you.

"I just wish they would ask," said Luke Lish, who at 17 is a high school wrestling champion in Idaho.

Littlefield, a competitive butterfly swimmer, says that when people stare at her foot when she doesn't have her prosthetic on, she smiles at them and waves with her foot and toes, which are where a knee would normally be (she has a Van Nes rotationplasty amputation).

Jessica Nordstrom, who lost her left leg at birth, admits that she had never really worn a skirt or a dress before.

"After listening to all the other campers and coming to this camp, I've thought a lot about it and I'm going to buy my first dress or skirt — I'm not sure which one. I'm pretty stoked," she said.

Ivie, the camp counselor, offers some dating tips to the teenagers missing a leg: "If they can't get comfortable with your leg, they aren't good enough for you."

Lowell has been fortunate in seeing quick and big results from the camp he started three years ago. "We get letters from teachers and parents who have witnessed the changes in the kids over the years that have been pretty amazing," he said. "We've seen kids with significant confidence issues where their own best friends in school didn't even know they were amputees and they will come back to camp the next year wearing shorts and talking about trying out for various sports teams, going to the dance and participating in activities that before camp they were a little too intimidated to pursue."

As much as the campers get out of the experience, the volunteers, guides and counselors get that and more from the river.

"I won't lie to you," said firefighter Mitch King, who has volunteered on many burn camps and all of the Un-Limb-ited camps. "I'm just selfish — I get so much out of it, I keep coming back."

Lacie Tye, the camp nurse, agrees.

"Working in the hospital, I don't ever get to see kids get well," she says. "So to see these kids, when I know what it is like for them to be in the hospital and what they have been through, and come out and do absolutely everything, it is just amazing."

Much is shared: Sunsets, rolling thunder, lightning strikes, bighorn sheep sightings, the thrill of the rapids and the stark beauty of a canyon that in some places is deeper than the Grand Canyon. But nothing compares to the sharing of each other's lives.

The river is a journey. At first, many campers are simply trying to fit into where they feel most comfortable. By the middle of the trip, all are friends and sharing intimate details about their lives. By the end, a lot of the teens say they have made friends for life, even though they may never see each other again. While saying goodbye, emotions are overwhelming. Long embraces are exchanged, often with very few words, other than "I love you." Tears flow like a river.

e-mail: smart@desnews.com