September is childhood cancer awareness month. Like most "awareness" months, the purpose of this one is political and financial. Despite over 12,000 diagnoses of pediatric cancer per year, despite it being the leading cause of disease-related death among children (greater than asthma, diabetes, cystic fibrosis and AIDs combined) and the fourth highest cause of death for any reason, despite the risk of long-term health problems among the thankfully growing number of survivors, childhood cancer receives on average 30 cents of research funding for every dollar spent on breast cancer and six dollars on AIDs. These statistics are no surprise to me. Children are on the bottom of almost every totem pole. But what disturbs me more is thinking that, if we have only this information, we will be more aware.
What disturbs me is how disturbing we find it to think about children with malignancies and how easily we create a myth that makes us feel better. We turn our children into heroes and angels and parents into martyrs or pillars of strength. Anyone who has read my Goodreads reviews of The Fault In Our Stars or Gold knows how I feel about the complexity of portraying the reality of a child with cancer. Of course, it is in our nature to protect ourselves from pain; the instinct doesn't flow just from fear but from compassion, as well. We worry about feeling too deeply, of having our sense of safety and control unmoored. I know that because, when my daughter Nadia was diagnosed with Ewings sarcoma twelve years ago, before I became unmoored, I pretended that she was going to be one of those heroes.
Motherhood Exaggerated is the story of my journey as a mother while caring for Nadia. Among the very complex reasons that I wrote it was the desire to show to others what they cannot or choose not to see. While I was seeking a publisher, I heard back from one editor who said she just couldn't work on a book about a sick child when she had an 8-year-old daughter at home. How dare she? How dare she think that she can get away without looking, without feeling, without experiencing what a fellow member of humanity has gone through?
Awareness only comes when we make the decision to look. It is a hard choice. It is hard to look at war, at child abuse, at poverty, at what we have done to the planet, at the seemingly infinite ways we can be pained and violated and weakened. Numbness and distraction seduces us. Our eyes burn and we must close them. My challenge, to anyone who cares to tackle it, is to keep your eyes open a bit longer than you think you can stand. If for only one day this month, enter the world of childhood cancer. Become aware.