I have avoided addressing this subject for a long time because I was afraid of offending. But lately I have been watching a channel that runs the St. Jude’s commercial on every break, and all I feel is the overwhelming urge to change the channel. So I’ll just say it. No matter how bad the disease, no matter how tragic the circumstances, young patients aren’t heroes.
Heroism is about choice, about facing difficulty when it would be easier to turn away. To face difficulty, you have to understand both the path you choose and the path you don’t. Sick children don’t understand that disease brings the risk of their own deaths, and they don’t make their own treatment decisions.
I was a child patient. Like so many others, and unlike so many others, I won my battle. It may be the biggest challenge I ever face. I didn’t have cancer or anything that has left me permanently disfigured, like the kids in the commercial, but it was close. My disease was fast, from flu to coma in a matter of hours. And the biggest side effect, hemiplegia (the complete paralysis of one side of the body), almost left me in a wheelchair for the rest of my life. It took years to get back what I lost, but I did, and I am grateful.
The pieces that fell into place just so (living near a hospital, a good guess by the attending physician, etc.) were just luck. The rest of it was hard work and sacrifice, nothing so pretty as heroism.
I was in kindergarten then, with no concept of what death was. I had lost a grandfather when I was two, but (sadly) that’s barely old enough to notice the absence.
As my fever built, all I knew was that I didn’t feel well. I was embarrassed that I had had an accident the night before (my bladder was already paralyzed), but it wasn’t anything more to me than the fact that I was too tired and I had to stay home from school.
When I woke up from my coma, I wasn’t scared. I was at an age when I was just becoming aware of my body and privacy had become important, so I was embarrassed again when I realized that I wasn’t wearing underwear (I was catheterized) and that someone had probably seen me that way.
During my hospital stay, which was about three weeks, there was pain, of course. There was only so much Tylenol they could give me. And I got very angry when my parents didn’t appear one night when they said they would. And it was fun gluing Froot Loops to construction paper with the other kids.
But that was it.
I didn’t fear for my life and then choose to do the therapy necessary to walk. My doctors did. My parents did. I’m sure I threw tantrums, but all kids that age do. It’s more about crankiness and hunger or frustration than anything else, usually.
Child patients are burdened with an incredibly challenging and life-changing experience, yes, and it is a triumph to come through it into some semblance of a productive life. But when you call a child patient a hero, you put us on a pedestal. When that happens, the child becomes “the boy/girl who lived” to borrow a phrase. Internally, it will be difficult to establish themselves as something other than that, more than that. That’s not fair. We are not our diseases.
Really, no one belongs on a pedestal. So, if you’re ever tempted, don’t. It’s hard enough to carry the baggage we have. We hardly need more.
If you really need some kind of label, try the best one – ‘child’.