Burn Survivor and Family Learn Lessons of Endurance
by Kathy J. Edwards, PhD
As Joe Schuckel crossed the finish line of the Mind Over Mountain Eco-Challenge in Cowichan Bay, British Columbia, he wasn’t thinking about the time, seven years ago, when he faced an even bigger challenge from a severe burn injury that almost took his life. Still the lessons he learned from that experience — the ability to fight through pain to reach a goal, the rigor and discipline of therapy, wound care and pressure garments, the mental toughness of a survivor — have helped him become the successful athlete he is today.
Joe’s most impressive athletic achievements include running six marathons with a personal best of 3 hours and 27 minutes. The Eco-Challenge was a six- hour event that included running, mountain biking and kayaking.
Joe’s next goal is to qualify for the Boston marathon. To do so, he must run a marathon in less than 3 hours and 20 minutes. He is hoping to make the qualifying time at the Portland Marathon in September.
Joe was burned in a late night camping accident on Jan. 27, 1994. He sustained third and fourth degree burns to 18% of his body. He lost his right eye and ear as a result of the burns and now wears prosthetics. It took four years of recovery and reconstructive surgery before the ordeal finally came to an end. By that time Joe had endured more than 30 operations including a rebuilt nose.
One of the most amazing things about Joe’s athletic success is that he didn’t start running until after his burn injury. Joe explains, “I started running three years after my accident while I was still in surgery- recovery-surgery mode. I began running to keep fit over the winter for mountain biking. I stuck with it through the initial 4-5 months of just hard work getting into running. My initial goal was to run 45 minutes without stopping. When I passed that, I was outta there. I started running trails farther and farther, 10 miles on Tuesday then 14 on Friday.”
Endurance athletes are able to tune in to their bodies to maximize training workouts, nutrition, hydration and rest. They also have a remarkable ability to tune out pain and fatigue during competition. Joe honed these skills while lying in a hospital bed for 115 days, most of that time with bandages covering his face and eyes. Joe humbly explains, “I was very good shutting out the pain, I developed a very high pain threshold.”
Remembering That Fateful Call
One common thread that runs through Joe’s life before and after his burn injury is strong family ties. His family was by his side offering encouragement and emotional support during his accident and recovery. They now share in the joys of his athletic accomplishments.
Joe’s burn injury probably had the greatest impact on his younger brother Rob, who was with him on the camping trip when the accident occurred. Rob explains, “Initially I was overcome with feelings of anxiety and guilt. I was terribly concerned that my brother would not survive the trauma of the fire.” Rob and another friend ran several miles to get help for Joe after the accident.
Joe’s oldest sister, Sara Gogo, vividly remembers receiving the message on her answering machine that no family member wants to hear—her brother had been burned and was in a hospital burn unit. “I remember they didn’t tell me which hospital. I tried to pick up the phone to phone a hospital just to see where he could be. I remember dropping the phone several times. My husband had to make the call because I couldn’t hang on to the receiver.”
Joe’s mother, Helen Schuckel, remembers that the hardest part was when they first got the call and weren’t sure if Joe was going to live. Bill Schuckel recalls seeing his son for the first time after the accident, “It was quite a dramatic thing to see him and not be able to do anything about it.”
At first Joe’s youngest sister, Victoria, was in a state of disbelief when she heard about her brother’s accident. Three years earlier their oldest brother, Ed, had died of a heart attack at the age of thirty. Because her family had experienced a recent tragedy, she thought it couldn’t possibly be happening again. “When I was called to come to the hospital because Joe had been burned, I had no idea of the extent of the burn. I was shocked looking into the unfamiliar face while the chaos of the emergency room swirled around me in a surreal way.”
Working Together to Support a Loved One
The Schuckel family pulled together to support Joe immediately after he arrived at the hospital. Sara explains, “In the first weeks after the accident, most of us were there most of the time. Our youngest brother Rob was there about 18 hours a day. Helen Schuckel elaborates, “It’s vitally important to be there as much as you can for the burn survivor. We were there as much as possible for the first four to six weeks. In some ways it was as much for us as for him.”
Victoria continues, “Maybe it’s because I was terrified of losing Joe — which was a definite possibility in those first days — and maybe it was out of a sense of lack of control, but my overriding impulse for the days and weeks that followed was to do things for Joe. I made tapes for him to listen to, bought him books and little gadgets, went with my mom to pick out new clothes for him, rented videos.”
Rob decided to take the semester off from school to spend more time with Joe. He even got a job working in the hospital so he could be closer to his brother. Because he had been present at the time of the accident, Rob struggled with strong feelings of guilt and post traumatic stress. “I felt guilty a lot of the time. I talked and cried in my fitful sleep. I had classic symptoms of post traumatic stress disorder (PTSD) and could have benefited from short-term antidepressant therapy; my sleep was disturbed, my emotions were unstable, and I only ate when I was fed.”
What to Say to Someone in the Hospital
Joe’s entire head was covered in bandages and doctors thought he might lose his eyesight. He couldn’t even read to pass the time in the hospital. Sara came up with an ingenious plan; she decided to read him a book on tape. She chose Forrest Gump (before it was made into a movie). Sara, her husband, and two girls read the first chapter into the tape recorder and each person included a short personal message as they read. Sara passed the tape recorder and book on to another close friend of Joe’s. Eventually the book and tape recorder were passed up Vancouver Island, then over to “the mainland” and up to Whistler, B.C. Most of his buddies left a short personal message along with reading a section of the book.
Helen explains, “the book on tape made it easy for a lot of people who felt they didn’t know what to say, to make contact with Joe.” Joe’s extended support network of family and friends made five tapes for him to listen to in the hospital and they eventually finished Forrest Gump.
Helen continues, “We have a big extended family. There wasn’t any empty wall space in Joe’s hospital room from all the cards he received. One of our relatives wrote Joe a note every week for the first year. She told him about what was going on in her garden and in her life. He joked about it occasionally, but he really liked getting those notes. It helped him remember there’s life outside the hospital.” She notes insightfully, “People in the hospital don’t want to just talk about what’s going on in the hospital all the time. You run out of things to say very quickly that way. They want to know what’s happening in the rest of the world, too.”
The support he received from family and friends played a major role in Joe’s recovery. He explains, “Just about every friend I have ever known sent a card or did something. I was amazed at how many people were thinking about me, praying for me, that sort of thing. It was pretty overwhelming I thought.”
It Helps to Have a Sense of Humor
His family and members of the hospital staff believe Joe’s sense of humor is one of the main things that helped get him through. Helen shares a memory of the early days when Joe was in the hospital. “It was during the 1994 Winter Olympics. Joe’s friend Sandy, an x- ray technician at the hospital, would come into his room and watch the Olympics on his TV. Joe’s face was completely bandaged at the time and he couldn’t see anything. She kept getting excited and saying “Look at that Joe!” Some people might have gotten upset but he thought it was funny.”
Another humorous moment came when his family started feeding him. Helen recalls, “The first time I fed Joe he said that I took too long. The next time I did it so quickly he hardly had time to chew.” One of the hardest adjustments for many burn survivors is learning how to accept help from other people. Joe had gone from being an independent adult to being fed by his parents like a young child. When Helen finished the second time he joked, “I didn’t know we were on a time limit.” She confided that they eventually got their system down and feeding went smoothly. It was easier for her because Joe expressed his feelings through humor rather than anger.
Coreen Kempling, RN, one of the burn nurses at Royal Jubilee hospital where Joe was treated remembers him as a patient with an incredible sense of humor. She recalls a time when Joe was back for surgery and mentioned that his prosthetic eye popped out while he was diving in a river, luckily his good eye could find his fake eye.
Coping With a Changed Appearance
Because Joe’s face and head were badly burned, some people were afraid to visit him initially. It is a testimony to Joe’s courage and social skill that he had so many repeat visitors. Helen explains, “Kids said Joe made it so easy for them to visit because he put them at ease. For example, the first time Sara brought her four-year-old daughter in to visit she spent a long time looking at him before she said anything. Joe said, “Go ahead and have a look.” She finally said, “Uncle Joe you only have one ear.” Because she was only four she thought she had discovered something that no one else knew. He chuckled and said, “That’s right.”
It was even more challenging for Joe after he got out of the hospital and began facing the public with a new appearance. Rob explains, “I followed Joe’s lead in recognizing that physically he had changed, but that he was still a funny, thoughtful, and caring person.” Joe’s accident caused Rob to reflect on his own beliefs about appearance. “As a family member I have had the opportunity to be confronted with my own prejudices of people who are different from me. While forcing other people to accept Joe for how he looked, I did not have to acknowledge that I was struggling to reconcile Joe’s new look with his pre-accident appearance. I watched him engage strangers in clubs and on the street with a “here I am like it or not” attitude. He has demonstrated again and again courage and self- confidence beyond what I consider myself able.”
One of the more difficult situations for those with a distinctive appearance is handling the reactions of children when they are out in public. Joe explains how he handles this situation, “I usually say right away that I was burned in a fire, but I’m okay now. Sometimes I tell them this is what can happen to you if you play with matches.” Helen elaborates, “Joe is a more confident person now than before the accident.”
Advice to Others
During the process of coping with Joe’s accident and recovery, he and the entire Schuckel family learned many lessons along the way. Rob explains, “Recovery from a traumatic injury involves all those people who are close to the survivor. I believe that family members need a place for safe, honest dialogue about their own feelings of inadequacy to be a primary caregiver, feelings about the survivor’s change in ability and the impact on social relationships and employment opportunities, and practical information for spiritual, emotional, physical and psychological needs.”
Joe suggests other burn survivors should, “Ask lots of questions. There’s help out there, you just have to find it.” He soon found a support group for burn survivors in Vancouver. Through the burn unit he learned about the Phoenix Society and the World Burn Congress. He has attended seven times, once with Rob and four times with Sara. For patients who are becoming discouraged, he emphasizes the importance of sticking with the routines suggested by health care providers. “Do your therapy. It does get better with time.”
Sara also encourages family members to reach out to others for help. “What we could have used at the time of Joe’s accident is someone to get in touch with, a family member of someone else who had been through a similar burn. We felt really lost. We felt we needed to know how we could be the best support and to feel more informed about what this meant as far as Joe’s future and the future of our family.”
Victoria adds, “All the while that were doing things to help Joe, he was building his own sense of self and looking to reestablish his life. In retrospect, he was traveling faster than I was.
Life After Burns
While the members of the Schuckel family are grateful that Joe’s accident and recovery are now events in the past rather than part of their day-to-day experience, they can see some ways the experience has created positive changes in their lives. Sara explains, “I changed careers after Joe’s accident, going from administrative work with the University of Victoria to working with people with developmental challenges in the human services field. Joe’s accident gave me the push it took to make a leap into work that held meaning for me.”
Rob dropped out of school for a semester to support his brother and to work through his own PTSD. He returned to school and completed a Bachelor’s degree in psychology. He decided to get an additional degree in social work which he completed in June 2001. The lessons he learned as a family member will be invaluable when he is in the role of helping other families cope with accidents and illness.
Victoria feels she learned a lot about recovery and resilience from her brother. She credits him with helping her understand “what really matters in life.”
Helen’s voice is laden with emotion as she acknowledges, “Looking back I can see there were good things that came out of it. Joe was overwhelmed by the number of people who cared about him. He really bonded with an awful lot of people.”
Joe adds, “It was sort of like being reborn. I could be whoever I wanted to be. I had so many people totally believing in me. It was contagious; I got the bug.” After he finished four years of reconstructive surgery he began working toward the goal of becoming a master chef. He attended Malispina Culinary Arts School and is now working at the Clarion Grand Pacific Hotel in Victoria.
Joe has a renewed sense of compassion and zeal for life. He is more actively involved in helping others, serving as a counselor at the BC Firefighters Burn Camp for the past five years, and working with Sara to help other burn survivors and their families in the support group on Vancouver Island. He even became a volunteer firefighter for the Maple Bay Fire Department.
When Joe Schuckel talks about his early days as a runner he remembers that it took months of hard work and determination before he developed the strength and endurance to run that first marathon. Those who know him as an athlete say he is the kind of person who makes it seem effortless. Those who know him as a burn survivor can’t help but say the same thing.