20 Oct We Fear What We Don’t Understand and Can’t Control
People fear what they don’t understand and can’t control.
Hence, our ambivalence toward teenagers.
Harley Davidson riders.
And little children battling cancer.
I had to throw that last one in there because lately I’ve seen what happens when kids with cancer meet people who don’t understand cancer. Even though 13,500 children are diagnosed with cancer every year, the reality is that most kids don’t get cancer. Most kids grow up healthy and strong. They sleep, eat, play, and go to school on a regular schedule. They make friends, do homework, and participate in extracurricular activities. But kids who have cancer have a different definition for normal. These kids have spent a portion of their lives in the hospital–weeks or even months at a time–and if they’re lucky enough to hear the acronym NED (no evidence of disease) from their oncologist, they get the “all-clear” to go back to life as normal. What I’ve come to learn, however, is that for them “normal” doesn’t exist.
I have a friend who doesn’t LOOK like a kid who has cancer. She isn’t bald. She doesn’t walk around with an IV pole. She attends school with other kids her age. But here’s the reality: She DOES have cancer, and she WAS bald. She spent many days in the hospital with an IV pole. Her hair has grown back, but not quite the way she remembers it. “It’s still growing,” her mom tells her. Additionally, she has a port in her chest, something she can feel every single time she washes, hugs someone, or even says the Pledge of Allegiance. During flu season, she will probably come to school wearing a mask–not because she is contagious–but due to a compromised immune system other kids are contagious to her. Cancer is not like other illnesses. It’s not a matter of just “getting over the symptoms” and then getting back to normal. There will never be a normal. For the rest of her life, this little girl will suffer the debilitating side effects of chemotherapy, which include heightened fears about her security, post traumatic stress disorder, possible hearing loss, nerve damage, and a predisposition to other cancers down the road. She will endure regular body scans and blood tests, not to mention her current schedule of maintenance chemotherapy which leaves her tired and weak for several days following treatment. She will eat, sleep, and play but probably not the same way as her peers.
And while I firmly believe that the new people in her life want what is best for her, they will never understand her new reality because they didn’t walk with her during her darkest days. Their view of reality is based largely on what they can see and touch today.
At Forever We, we believe stories matter. And all stories have a beginning, a middle, and an end. You wouldn’t pick up a book at the library, flip to a random page, and begin reading. You’d be so confused and lost! We can’t do that with our relationships, either. To understand why people behave the way they do today, we often have to explore what happened in their past.
The causes of most pediatric cancers remain a mystery and cannot be prevented. And that’s precisely why we can’t fear it. We can only do what we can do, which include sharing our lives with those it affects, forging friendships, and funding research. We can also acknowledge that while some things are beyond our control, they don’t have to be scary.
What will you do to make a difference in the life of someone you know today?