Survivor Guilt ~ The "Why Not Me's"

1998 - 2002

This was the time when I was starting my career in Social Work. I was bright-eyed and bushy-tailed...ready to save the world. I was naive enough to think that I could help people with illness the best, because I had real-life "experience". I quickly learned that NOTHING can prepare you for a career in working with children and adults facing illness and death.

Survivor Guilt is defined by Wikipedia as "a mental condition that occurs when a person perceives themself to have done wrong by surviving a traumatic event." This pretty much sums up my life when I first entered my career as an Oncology Social Worker. I often felt a sense of guilt for "having it easier". These feelings continue today as I become more integrated into the CF community.

During grad school I worked at the hospital I am treated at for my CF, in the Pediatric Oncology Department. Through this opportunity I had some of the most life changing experiences. I began volunteering for a camp for kids with cancer, where many of the patients that I worked with at the hospital went each summer for a respite. For 3 years I spent a week of my life dedicated to helping kids with cancer enjoy carefree days with others like themselves. It was truly amazing! These kids didn't have to be embarrassed that they had no hair, or explain why they were missing a limb or and eye. There was a mutual understanding that didn't exist in the "real world". I loved these kids...for who they were, for what they battled, for the burden they carried and for what the gifts shared with the world. Many of them died. This is when I felt the first twinges of "survivor guilt".

This was me and "L" one year at camp. I spent a lot of time with "L", because he needed someone to sit and play with him while he received treatments at camp. He had been battling Acute Myelogenous Leukemia for years. He was fighting symptoms of rejection of his umbilical cord stem cell transplant during this year at camp. "L" died about 6 months after this picture was taken.

This is "T" and I. I worked with her very closely at the hospital I worked at during this time. "T" was also being treated for leukemia. She died a couple of years after this picture was taken.

This is one of the sweetest boys named "B". "B" had Ewing's Sarcoma. He lost his leg to the disease. He had lost his leg years before, and I remember how he would sit around talking to the other boys who had lost limbs to Ewing's. He would remove his leg and show them tricks on how to make it more comfortable. He would reassure them that they would get used to the prosthetic. He was an amazing support to those boys. "B" died about 8 months after this camping trip.

This is the time when the "Why Not Me's?" kicked in. Yep, I had my difficult times, but I did not nearly know the suffering that these children experienced every single day. I started asking...why them and not me? These were great children. Why are children brought into this world to suffer? Why was this their path? Don't get me wrong...I didn't want to suffer or die myself. I just had a hard time coming to grips with the fact that these children were struggling. That ANY child was suffering. Why were my treatments working, and thiers were not? It's a very odd sort of guilt that is felt in these situations. I would sometimes wish that I could take on some of their physical burden. BUT, I couldn't. All I could do was be with them, play with them, try to help them understand and cope. I truly hope that I made one moment of these children's lives better in some small way.

After working in the hospital setting, I got a job working for my current employer. This job allowed me to work with both adults and children. I was in charge of developing support programs for blood-cancer patients. Soon after I came on board I found out that my high school English teacher was one of my patients. She called me one day on the job to welcome me and we became kindred spirits of sorts. She had Chronic Lymphocytic Leukemia. It is the type of leukemia that I feel is the most similar to my CF in its presentation...slow growing and progressive, yet incurable. I have always felt a special connection with this patient population. Marty was my teacher and helped guide me through English classes (what she knew). It was now my turn to guide her through what I knew (living with an incurable illness). We had many deep conversations about illness and became pretty tight. In 2002, I raised money and ran the Mardi Gras marathon in honor of Marty.

Marty and her entire family flew to New Orleans to cheer me on and meet me at the finish line. We even had shirts made with our faces on them and a message on the back about our deep connection on so many levels. Marty died in 2003 from complications of her CLL. Marty had prepared her memorial service prior to her death and she asked that I speak. I felt honored and knew then that she valued me as much as I valued her.

Why Marty? Why Not Me?

And there were many, many more people like this that I tried to serve before they died.

HOWEVER, for every person who dies, another survives and thrives! These survivors are amazing human beings who can teach us much about life and love. So for all of the sadness, there is an equal amount of joy!

So why did I choose to take this path with my career? Why would I ever choose to work around illness and death? At first I thought I could be of service, because I understood what it meant to live with illness. I quickly realized that wasn't it anymore. It became that I felt privileged to be able to sit with people in their despair. If there was something I could offer or say, or if I could just share some silent understanding during these difficult times, then I felt like I was making a difference. The perk was that I was also able to share in the successes, which were many and were AMAZING! People ALWAYS say, "I don't know how you do what you do!". I ALWAYS respond that "I don't know how someone could NOT want to do what I do!"

Over the years I have been able to come to terms with the fact that sometimes really bad things just happen to really good people. There is really no rhyme or reason. However, the survivor guilt sometimes rears its ugly head even today.

This week as been difficult for the CF community with the death of little Conner Jones. Conner struggled with CF all of his life, and sometimes really suffered. I have to be honest, my first thought was...

Why Conner? Why Not Me? Why was this Conner's path?