AMPed Up and UnLIMBed
AMPed Up and UnLIMBed!
By Kathy Edwards
Burn survivor-amputees and health care providers shared information and inspiration in this breakout session at the Phoenix World Burn Congress. Maureen Cross, MPT, WCC, CLT, began the session with information about wound healing, prosthetics, the power of a positive attitude and the challenges of working with insurance companies. For inspiration, Maureen showed excerpts from a TEDTalk by Amy Purdy, a double amputee who won the bronze medal in snowboarding at the 2014 Paralympics in Sochi.
In the second half of the session, panelists James Andreoli, Jamie Goldman, Eric Weatherbee and Sara Miller answered questions from co-facilitator Sam Wotring and members of the audience. James, Jamie and Eric shared insight on how they learned to adapt, survive and thrive after an injury that involved one or more amputations. Sara was born with a condition called amniotic band syndrome. She chooses not to wear a prosthetic on her arm for practical and functional reasons. Each panelist shared some of the tips that have worked for them and some of the challenges they face.
Eric noted that his level of ability fluctuates because his skin and tissue may react differently at different times. He explained that sometimes he can wear his prosthetic legs and walk on his own, ride a bike and participate in sports. At other times his skin or tissue breaks down and he isn’t able to wear the legs, or he needs to wear a different pair with different adaptive ability. Because his level of ability is variable, it’s hard for some people to understand. He shared an example of attending a professional sporting event where the ushers were not willing to help him get disabled seating. They said he didn’t need it because he could walk on his own that day. He has to work to educate people about how his ability can be variable over time.
James, who is two years out from his burn injury, talked about how at first he had lost everything he loved to do. “I couldn’t walk, or hike, or participate in sports. I love to sing, but my vocal chords were affected by the accident. I love to play the piano, but I couldn’t.” One of the hardest things was finding that the activities he typically used to relieve stress and create joy in his life were not available to him when he was first injured. It took months of therapy and hard work to begin to regain some of those things. In the meantime he found other ways to cope by connecting with his family and friends. He celebrates every milestone on the way to regaining each of those functions. “I’m starting to sing again now that my vocal chords are healing,” he explained. With his newest prosthetic leg, he can raise his foot and walk over curbs. “It’s the first step towards being able to hike again,” he explained with a smile.
Jamie shared a story about educating people. She recalls an incident when a young boy was curious about her prosthetics in the grocery store. She let him touch her legs and patiently answered his questions. She even went out to the parking lot with him and showed him how she could run and play. She believes that her willingness to share and help people understand more about amputees helps alleviate fear and prejudice. She is an accomplished runner and also a kindergarten teacher. She has written a book called “Up and Running,” about her running career and she’s also written a children’s book to help her students understand more about people with prosthetics. Jamie sometimes marvels at all the changes that have occurred in her new life. She explained that she wasn’t really an athlete before the severe frostbite injury that took her limbs. Running is something that came into her life after the injury.
Sara shared a story of perseverance and educating those who are uninformed that occurred when she tried to get her driver’s license at the age of 16. The first time she went to the DMV, the examiner told her, “You can’t drive.” Although Sara and her father were determined to prove she could, they didn’t get the chance on that particular day. When they went back a few months later, they got a different examiner who was willing to give Sara the driving test. She passed with flying colors. She hopes that her experience with the DMV helped educate employees so that future amputees will not have to wait months to take their driver’s test.
As each panelist recounted stories of hope and learning to adapt, some of the burn survivors in the audience shared their insights, too. The panel lived up to it’s name, as each person, regardless of their life experiences or abilities, left the room feeling amped up and unlimited!