Desperately Seeking - Resilience

When Johnny was going through chemotherapy for leukemia (ALL), I understood for the first time that I had never known desperation in my life.

David was a young Latino boy from a working-class family, about eight or nine years old. He was one of eight children. His mother may have worked previous to David's diagnosis, but when I knew of their family, she was either at home with the children, or in the hospital with David. His cancer was a rare kind of tumor, difficult to treat and not responsive to existing protocols. David's father may have been a mechanic; I am not sure, but I knew that his pay was hourly, and it was not the kind of job that offered medical benefits or family medical leave for parents. His dad got paid on the days he went to work, and that was it. When David had to go to the hospital for treatment, one parent had to go with him, meaning that his dad couldn't work - either staying home with the other kids, or going to the hospital with David. When he didn't show up for work, he would lose his job and then would have to find work elsewhere. Every time he got fired, it became harder and harder to find new work.

At the Austin Children's Cancer Center, Dr. James Sharp never billed patients directly for treatment; he billed insurance companies only. We were fortunate that John had excellent health care benefits through the University of Texas as a graduate teaching assistant. Our insurance covered a large portion of Johnny's medical expenses. We never saw a bill from Dr. Sharp. Families like David's, however, had little or no health insurance benefits. Dr. Sharp never billed them, but he had no control over expenses incurred at the hospital. David's expenses were certainly high with repeated admissions, long hospital stays, and multiple procedures performed there. Then, tragically, one of David's siblings was diagnosed with cancer as well. 

Christmas was approaching. Johnny spiked a fever and within twelve hours he had developed pneumonia. He spent ten days in the hospital at the first of December. He got out of the hospital just in time to attend the annual American Cancer Society Christmas party held for Dr. Sharp's patients and their families. These parties were wonderful events. They provided delicious food, festive decorations, special appearances by Cookie Monster and other childhood celebrities, and beautiful gifts for every child going through treatment as well as for each sibling of those children. Our kids loved these parties. 

I was basking in the holiday lights, watching my three children play when Diane, the center's staff psychologist, came over to visit. We chatted about holiday plans and the evening's events. She mentioned that David had just been re-admitted to the hospital. I don't recall if his sick sibling was still hospitalized or at home at the time. Either way, it was dismal news that only got worse. David's father, it seemed, had robbed a local gas station and disappeared altogether, leaving his wife and children to deal with their devastating plight without his help.

I was stunned, and my heart broke to think what David's family was going through. It occurred to me that David's father may have finally reached the end of his rope. It then occurred to me that even in my darkest moments, when my heart and mind were consumed with worry and fear about Johnny, about John's schooling, and about our future, desperation was not one of the emotions I had to deal with. I knew that, if things got really, really bad, I could call my parents, or John's parents, and they would help us. I knew that I could go to our bishop and ask for food, or for financial help, or for emotional support. For the first time, I saw clearly the comfort and strength I had within my grasp because there were people who were committed to helping my family if we truly needed it. I realized that never, at any time in my life, had I ever conclusively felt alone. I had been sad, lonely, discouraged, and frustrated. I had been financially broke. I had gone without things I wanted, and a few things I needed. I had even been hungry a few times. In all that, I knew that these were not permanent conditions. I lived daily with the hope that John would eventually graduate and get a job that would support our family. I had hope that we would someday be able to eat something besides beans and rice. I trusted that things would get better, and I had every reason to be confident in that belief.

That Christmas season I saw for the first time that, as hard as it was for us to deal with Johnny's illness and its incidental financial and emotional strains, we did not know the despair that comes with relentless poverty, recurrent unemployment, and staggering medical issues. I wondered who else, besides the staff at the cancer center, might be considered a viable resource to David and his family. Did they have a church family or other social circle who loved them? Who fed them? Who might help with laundry and housework, or who might assist in locating work, paying bills, or providing  financial relief?

I began to see my own blessings and privileges in a completely new way. As comforting and pleasant as my material advantages and resources were (meager though they may have seemed in those years), I had a stark new appreciation for the intangible blessings of the security, trust, confidence, and hope I had been afforded by connections to family, friends, and church members. These intangibles often played out through affirmations, emotional support, and personal examples which built me up and supported my belief that things would get better if I kept trying.

I can't share a happy ending to David's story. I don't believe that he survived his battle with cancer. I don't know what happened to his parents and his siblings. John defended his dissertation the same month that Johnny received his last chemotherapy treatment. We took a job at Auburn University and left Austin behind. Life got better for us just as I had expected it would, although struggles awaited us still that we hadn't yet imagined. 

What I had learned was that I must never take for granted the power that peace in my home, the trust I share with my husband, and the temporal and spiritual strength my membership in my church collectively afford me. As a result, I have invested substantial energy to nurture and maintain those resources, and to try to become a resource to others.