Many of us will experience the same milestones in our lives, such as, school transitions, dating, marriage, entering the workforce, or having children. However, many of us will experience them in different ways. The Phoenix Society strives to provide the tools and community support that burn survivors need when experiencing life’s milestones. At the 2012 Phoenix Society’s World Burn Congress in Milwaukee, WI, a panel of exceptional burn survivors was assembled. Those panelists were asked to share their stories and how their burn injury has shaped the milestones in their lives. Panel moderator, Karen Badger, PhD, MSW collaborated with James Bosch, who shared with her some of the life events he encountered during school and when entering the workforce as a burn survivor. Karen will also work with other panelists, Kimberly Holt, James January, and Dustin Wise, to share their perspectives in future issues of Burn Support News. Read James’s entire story here:
We mark each year with life events—birthdays, anniversaries, holidays, and for some, the World Burn Congress (WBC). Milestones or life events—things most likely to affect our future behavior or bring about serious or lasting changes—are important markers in our lives.
Milestones are major events or every day small events that have an impact on us. Even though many life events are common to us all, we won’t necessarily experience them in the same way. The significance or desirability of a life event can vary from person to person depending on their circumstances and other factors. We each evaluate our life experiences within our own worldview, frameworks, histories, circumstances, and the meaning we, as individuals, assign them.
Burn survivors transitioning through life events or passages (such as dating, getting married, having children, school transitions, joining the workforce, reconstructive surgeries) may experience new feelings or concerns, as well as the re-surfacing of previous ones—such as those related to trauma or loss—as part of the healing cycle.
The healing process is a dynamic one—we do not experience our feelings only once and move on, but instead re-visit them in different ways time and again. However, we revisit familiar issues or feelings from different perspectives as our work, life experiences, and self-reflection shape us as individuals. This ongoing process allows for the deepening of our healing. Writer James Kepner describes healing as similar to creating an oil painting: “… the background is painted in, and then details are added, and then washes and tone are overlaid on the whole. But the painting is not yet done, for the background still has to be refined in light of the emerging details, and then more details will be added and shifted…each part of the painting supports and refines the previous part and is supported and refined in turn.” James Bosch, our first panelist, discusses milestones he has experienced by describing his experiences with school and the workforce as a burn survivor, how he navigated these life passages and his opportunities for healing along the way:
When reflecting on my life’s milestones I see that my lived experiences influence how I meet these life changing events—the most immense being a traumatic burn injury. My accident happened when I was only 8 months old. A hot water humidifier—a steaming caldron of water—poured down on me in my crib. This resulted in burns to most of my body, leaving 30% with disfiguring scars. My fate was changed before my life really had a chance to launch.
School is supposed to be a nurturing place, yet it can often be a lonely and hostile environment. Have you ever had intense fear or anxiety before starting something new, such as a job or a new class? It is very human to have jitters when you are about to enter a new situation. My fear responses often felt extra intense, especially in social situations. I now believe that this is due to my early trauma and the retraumatization I experienced when entering school and social groups as a child with scars who did not have the tools or understanding to deal with those situations. I often was the kid on the edge of the playground, not knowing how to join the mainstream. As I aged and gained more life experience I learned how to be a social person, yet I often really had to push myself. These social fears became internalized and I was often overly self-conscious of my scars and my entire manner of being.
I felt a sense of isolation in my experience—very different and alone, and not knowing how to reach out to adults around me for help. My mother, school counselors, and certain teachers tried to reach into my isolation and lend me a hand. I had a very difficult time accepting help because it was such a deep, unconscious wound. I could not really conceptualize my experience or put words to it—my injury happened at a pre-verbal development stage. My mother has since shared that 45 years ago when I was burned the doctors told her not to talk about the scars unless I brought them up. I didn’t bring them up, hence the silent sufferings—my mother not knowing how to help me and me not knowing how to ask for help. At “open mike” each year at WBC I hear similar stories from adults burned as children. It helps knowing my family was not alone.
I believe school reentry programs, burn camps, the UBelong program at WBC, family camps, etc., are so very important for burn-injured children. Perhaps if I had had access to these types of peer support, I could have made bridges to the classroom, the sports team, the activity groups in my school and community.
If you met me today you would probably be surprised at the child I describe as me. Today I am fairly outgoing, a good communicator, and a very approachable, warm person. One reason for this is that children can be extremely resilient and can heal despite incredible odds. I had a fighting and exuberant spirit. The other is that once I left the often-challenging halls of school and entered the workforce, I had opportunities for healing and developing social skills as an adult college student and worker. The wonderful thing for us humans is it is never too late to experience new learning and development
Entering the workforce was an opportunity to learn life skills not developed in the school environment. Here there are 2 pivotal milestones—the job I had in the hospital where I was born and then treated for my burns, and being a counselor at Champ Camp, a burn camp in California.
The job at the hospital gave me a place to belong. A very tight- knit group in the laboratory many still my friends today—took me into their fold and provided me with an instant social group where I could practice being myself. There I dated, excelled at a job, learned about money and responsibility. Though not my calling, it provided a social environment in which I could relax and develop some of the skills that I had missed out on while numbly “just getting by” in those early years.
Another pivotal day was when I saw a TV news report on Champ Camp. I was in my mid-twenties and still had not met another burn survivor or talked about my burn issues. I wrote the number down and then forgot about it for almost a year. One day at the lab, feeling very depressed and like my life was missing a crucial “something,” I remembered the Champ Camp number, found it, and called. They were interviewing that weekend for counselors and I made the 4-hour drive the next day. I was so nervous and excited. After the interview I waited for a call, terrified I would not be accepted. I knew I had to be at the camp. The call came and the rest is history. I went on to work at the Alisa Ann Ruch Burn Foundation after finishing college and had 10 very wonderful years there.
My intention was not to go to camp to heal myself but I went with the spirit of helping out the kids. I remember a moment on a trail ride early in my first year. I was on my horse surrounded by my campers and fellow counselors. I felt golden warmth and a moment of understanding all over me. I knew in that instant I was not only helping these little guys heal, but that the burned child inside of me was also healing. It was a subtle and poignant moment. Today when I train survivors to be peer supporters I remind them they are there for the burn survivor, yet they will experience healings themselves. It is important to hold these moments as gifts and then return our focus to those who we are helping.
On coping: I now know when my “trauma body” is being activated. I use a simple mindfulness practice of grounding in the present moment and in my environment by checking in with my 5 senses (sight, sound, taste, touch, and smell) when I feel flooded by fear or anxiety in a situation. This lets me know where and who I am in that very moment—an adult having an adult experience, not a scared kid needing to protect myself. A quick Internet search is worth your time to locate resources on mindfulness practices to find ones that will work for you. Connecting with my spirituality is important to me too—knowing I am part of something bigger and more important than my thoughts.
Knowing and building close friendships with other burn survivors has been crucial for me in my adult life. Being there for others requires self-work through personal therapy, social or spiritual groups, and connection with mentors with whom we can be honest. To have a peer network with whom I can now share the joys and challenges of my next milestones is so important.
Although my burns have defined much of my reactions or responses to life’s milestones and challenges, they are not the only factor. Like Kepner’s painting analogy of healing suggests, it is just one of the many experiences that color who I am. The beauty is that we always have the opportunity to blend in new shapes and colors to enhance who we already are and who we are in the process of becoming.
Reference Kepner, J. I. (1995). Healing Tasks: Psychotherapy With Adult Survivors of Childhood Abuse. San Francisco, CA: Jossey-Bass Publishers.
Karen Badger, PhD, MSW, is an associate dean and associate professor in the College of Social Work at the University of Kentucky. James Bosch, MA, is a marriage and family intern at the Liberation Institute in San Francisco, California.