World Burn Congress 2001
By: Linda Jurus

I did not know what to expect from attending the World Burn Congress (WBC) but I am happy to say I am glad I did. It was an awesome experience. I came away reenergized and
BSTTW
Translations
refocused.

How I came about attending the WBC was because of my daughter. My daughter, Christine, was involved in a menthol fire in her high school chemistry class the day before Thanksgiving in 1999. Since that day, our family has been coping with her injuries as well as our feelings. The hospital was a safe environment. The doctors, nurses and hospital support staff answered all of our questions. Friends and family members kept us company during our stay. The big day came and our daughter was ready to go home. The safe environment of the hospital was no longer and the reality of the real world hit us. Whom can we talk to? Who will listen? Who understands how we feel? Finding support for both the burn survivor and family member was difficult to find after leaving the hospital. We met a burn survivor who worked very hard to try to get a support group started in our area but it did not work out. He helped our daughter attend her first burn camp in Pennsylvania for which we are most grateful. She met some wonderful people who will forever be her friends. The experience was so positive that she also attended a burn camp closer to her home in Michigan. Again, she had a wonderful experience. Mom, dad and brother turned to the Internet to search for any information regarding burn care. It took quite a bit of investigating but they found Burn Survivors On Line (BSO) and Burn Survivors Throughout The World (BSTTW). Both sites offered wonderful articles on burn care, burn survivor stories, medical information but most

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importantly, each site offered on line chats. By participating in the chats, we were able to find support. We learned that we were not alone. Both sites introduced us to The Phoenix Society for Burn Survivors. By signing up for their newsletter, we found out about The World Burn Congress (WBC), which was being held in San Francisco that year (2000). Both on line groups spoke highly of their experiences in attending the WBC. It got our familythinking was this something we might be interested in. Was it for us? What could we expect? Whom would we meet? We discussed the event and decided to focus on attending WBC in the year 2001 especially since Grand Rapids Michigan was so close to our home. What would we have to lose? We started to plan our trip.

The day had finally arrived, the beginning of World Burn Congress 2001. In driving to the Amway Grand Hotel, we had to call 911-road side assistance to fix a flat tire. Police officers arrived and after telling our story and where we were headed they fixed the flat tire, gave us instructions to the hotel and helped us return to the highway. When we arrived at the hotel, we quickly unpacked our bags and made our way to the check in area for the WBC. We received a bag filled with conference materials and were asked if we'd like to have our picture taken to be placed in the WBC 2001 attendee pictorial. We had our picture taken, listed the information we wanted published and was given a receipt to pick the book up before we left the WBC. We browsed the displays and spoke to fellow attendees. It was

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now time to meet at the street level of the hotel to board buses to take us to the Frederick Meijer Gardens where the opening ceremonies were to take place. While waiting in line to board the buses my daughter introduced me to some of the friends, she had met at her camps in Pennsylvania and Michigan. As we drove to the Frederick Meijer Gardens, an unusual sight was seen. The street was dotted with fire trucks honking, firefighters, paramedics and people from the Grand Rapids area waving to us as we passed by. Upon entering the Frederick Meijer Gardens, we were greeted by two fire trucks making an arch with their ladders across the drive. The buses stopped at the entrance and we started to disembark. What is that sound? It sounded like applause. Whom were they clapping for? The clapping grew louder the closer we got to the entrance. Firefighters and paramedics lined the walkway applauding us the burn survivor, family and friends. Just before entering the gardens, an honor guard stood in place saluting us. That was such an overwhelming experience. Some of us were in tears. Some of the new friends you had just met came up to you and gave you a big hug. Welcome to the World Burn Congress 2001! You felt safe immediately to know that whatever you were feeling at the time, you were allowed to feel and the support was there to get you thru. We were able to spend about an hour and a half exploring the beautiful botanical gardens. We shared our meal and danced the evening away.

A new day a new beginning. The morning brought us inspiring words from Cliff Meidl, burn survivor and Olympic kayaker. He shared his story of how he survivored his injuries and made it to the Olympics. His proudest moment came when he was asked to carry the flag of the United States during the opening ceremonies. During lunch, we experienced our first open mic session. It was interesting to listen to each story that was shared. In the afternoon, I attended the breakout session called Sharing Stories of Closure for Survivors and Firefighters. As I listened to burn survivor and firefighter/paramedic share his or her own story of closure I realized how important that aspect of healing is. Our family had the opportunity to share an afternoon with the chemistry class students and all the firefighters/paramedics who where involved in my daughters accident. Many positive responses came from that meeting. Our family has one more part of our closure story still not complete. We would like to give a picture, which was taken at the reunion to the firefighters/paramedics of the students and themselves as a remembrance that each involved survived this accident whether they were burned or not on that day before Thanksgiving in 1999. We also try to keep in contact with the hospital staff that took care of our daughter during her stay and the following year of therapy. During our evening breakout session, I had the opportunity to meet with other family members/caregivers of burn survivors. I thought I was the only one who had feelings as I did. I was so happy to hear that my feelings seemed to be normal. What I was experiencing others had experienced also. It was a comfort to know that I was OK. I was able to visualize how far I had come in this journey.

My daughter attended the Young Adult Workshop that first day. She had the opportunity to meet with a small group of young adults to share concerns related to their specific age. They also had the opportunity to go jet skiing and participated in a water rescue. She enjoyed having the opportunity to participate in her own sessions with her peers and then have an opportunity to mingle with the larger group of attendees later in the evening during "gathering time".

Friday morning's session gave a wonderful insight to Relationships and Healing. It was presented by Megan Branson and Dr. Joe Mlakar. They took us step by step thru the process of healing. We also had the opportunity to listen to Faith Roberts speak on sexuality. She mixed humor with down to earth principles on
the subject. A topic we seldom want to approach she was able to show us how to overcome our fear about talking about this issue with our grandparents, parents or children. We again had the opportunity during lunch to share our story during the open mic session. It was so brave of those that stood courageously and told their story. The Young Adult Group met together for dinner and afterwards some were able to go dancing at one of the local dance clubs. It was a fun evening for them.

Saturday morning brought us a wonderful hour of humor with guest speaker Dane Wysocki. Intertwined with his stories he shared the importance of humor in recovery. I attended the morning breakout session entitled Community Support for Burn Recovery. We listened to how one can start from a very simple idea and watch it grow over the years. Good hints were given on how to organize a fundraiser.

Saturday afternoon brought the last of the open mic sessions and the closing ceremonies. We listened as several burn survivors shared their stories and thoughts. Two stories stood out in my mind. The first being a gentleman suggesting we picture a wall, like the Vietnam Memorial Wall. With names and possibly dates of burn survivors "heroes in our eyes". He started to mention several names like Alan Breslau, visionary of the Phoenix Society, Amy Acton, Director of the Phoenix Society, Cliff Meidl, burn survivor/Olympic kayaker, Tom and Mary Hessel, Jill Sproul, Dennis Gardin among many others. He paused after each name giving you time to reflect on his words. It was very powerful. You wanted that wall to be built right now. To pay honor to those who were burned. The second story was that of a young man who spoke of his long journey. He explained how this past year was difficult for him. He just started a new job. A few weeks into the job a new female employee had started. He stated he thought she was the most beautiful girl he had seen. He wanted to ask her out but was afraid she would say no. He did ask her out and she said yes. They dated for a while then he had to have surgery. She stayed by his side during his hospital stay and recovery afterwards. The relationship continued to grow and right then as he was telling his story he got down on his knee and asked her to be his wife in front of us all. Whooping, hollering, and a standing ovation went on for several minutes. The crowd quieted and we could hear her loud response of YES! I will marry you. Watching that story unfold is something that I will not forget. It was beautiful.

Saturday night we had our goodbye banquet. Great food and music played throughout the evening. It was a great opportunity to catch up one more time with the new friends we had met during our stay. We promised to keep in touch until next year when we could meet again in Phoenix Arizona.

I am so looking forward to making plans to attend my second WBC. I will treasure this event for a long time. It is an experience I hope every survivor, caregiver/family member has an opportunity to attend. Thank you for letting me share my story with all of you.

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