After she was diagnosed with scleroderma in 1986, Karen Hamilton, RN-C, CEN, CRRN, CFRN, MICN, NREMT-P, CCEMT-P, chose to do what nurses do — she researched the disease she only vaguely remembers being mentioned early in her nursing education. “When I first started reading about it, I panicked,” she recalls. “I really thought I was dying.”
Initially, Hamilton only told two close friends; she just wasn’t yet ready to tell her family. Then, three weeks after her diagnosis, she met her husband, Jeff. “We had a whirlwind relationship, but I felt I just couldn’t handle a broken heart then,” she says. Although she decided not to tell him, intuitively, Jeff sensed her turmoil and asked if she was ill. “I don’t know how he knew,” she recalls. “I was in a very active job, a long-distance cyclist, and showed no external signs of any illness.”
Choosing to Live Optimistically
With Jeff’s love and support, Hamilton chose to “think positively and live each day to the fullest.” They married and in 1989, they incorporated their company, Aeromedical Transport Specialists, Inc., a fixed-wing air ambulance service located in Manassas, VA. Hamilton serves as the chief flight nurse and program director of the service, flying critically ill patients to destinations all over the world. In addition to her work as flight nurse, Hamilton has developed a much-needed training program for hospital-based flight programs, and, to date, has trained more than 2,000 medical professionals from nine countries.
Along the way, she has published numerous articles and two books on flight nursing. She also makes time to volunteer — averaging between 75 and 100 hours each month with Stonewall Jackson Fire and Rescure Department in Prince William County, VA. Recently, she received the American Association of Critical Care Nurses “Excellence in Caring Practice” Award. She was chosen for the way she uses teddy bears to bring joy and relax her patients during air ambulance transports.
Raising Awareness ... and Funds
As Hamilton learned more about scleroderma, she found that, like her, most people only gained awareness of this devastating disease if they or a loved one was diagnosed. She and Jeff decided to use their love of cycling and form a nonprofit corporation to increase awareness and raise research monies for scleroderma.
Since she loves teddy bears and sees them as a link to compassion and caring, the natural choice for their corporate name had to include something about bears — thus the “Care Bears Team, Inc.” was born. The name is an acronym for “Cycling Around Reaching Everyone Bringing Enlightened Awareness for Research on Scleroderma Touring Expedition Across the Miles,” and represents more than 17,000 miles cycled across three continents.
Their 2003 tour began in August. The 3,000-mile bike tour started at the University of California Scleroderma Research Facility and will conclude on the steps of the Capitol in Washington, DC. The Hamiltons will bring a petition to request an increase in funding for scleroderma research with the National Institutes of Health. This fall they will cycle from Chicago to Houston, a 1,500-mile tour called “The Rough Rider Tour Through America’s Heartland” in honor of the 100th anniversary of the teddy bear.
As the official bicycle team of the Scleroderma Research Foundation, they strongly support the foundation and its efforts. “The foundation uses 90% of any donated funds directly for research,” Hamilton explains, “and the president and founder, Sharon Monsky, also had scleroderma.” Sadly, Sharon died May 11, 2002, at the age of 48 after years of suffering complications of scleroderma.
To raise additional funds, artist Priscilla Hillman designed an exclusive scleroderma piece entitled “Karen and Jeff,” a Cherished Teddies® figurine that is an interpretation of Hamilton on her bike, with Jeff sitting behind her. “I’m the big bear,” Hamilton explains, “and the little bear on the back is Jeff — as he is always watching my back — and the bear balanced on the handlebars is my father, who is our angel bear.”
The “Karen and Jeff” bear is available in Hallmark® Stores, card shops, and collectible shops. The cost is $25 and a portion of the proceeds goes directly to the Scleroderma Research Foundation. Hillman has also donated all of her royalties to the foundation.
Pain — A Constant Companion
On any given day, when Hamilton is on a bike tour, she rides 65 to 70 miles. Her pain is worse on a bike trip. “I have joint pain every day, and I may eventually need hip and knee replacement,” she says. As a result of scleroderma, Hamilton now has a 100% loss of esophageal peristalsis. “Now, I eat and drink by gravity, and from time to time, I need to have my esophagus dilated,” she explains. “I also have some lung involvement now, so I do get winded.”
Still, Hamilton stays firm in her resolve to continue cycling and nursing. “God, Jeff, and my love of cycling and nursing have kept me well,” she says. “I have a will to live and go on. I’m always active, for I’m afraid if I slow down, I’ll die.” For others who face life with scleroderma, Hamilton suggests that “they think positive and live each day as fully as you would if it were your last day. Do what your body feels and remember that doctors aren’t always right.”
For more about the Care Bears Team, Inc. and its tours, visit www.carebearsteam.org.
Margaret Hawke, RN, MA, is a contributing writer for Nursing Spectrum.