I have decided that I do not like the word survivor.
I understand, of course, that there are childhood cancer survivors who wholeheartedly embrace that term and everything it entails. I don’t wish to detract from that.
I do not remember a single second of battling neuroblastoma. It’s hard to feel empowered by something that you don’t remember.
The term “survivor” implies, to me, that I did something to earn the right to be here today. And I didn’t. I was two! I was one year old when I was diagnosed. I was two when my treatment was finished with me (I wasn’t done with my protocol yet when the viral encephalitis damaged my brain stem). I didn’t know what I was doing. Does anyone know what they’re doing at age two?
I may have a bad case of survivor’s guilt. Right here. Smack dab in the middle of my chest. Sometimes it leans a little too heavy to the left, splintering my heart. Why? Why am I still here when so many others aren’t? Surely someone else would be doing a better job at this than me.
I probably will never understand what I want to so desperately – what it means to be a survivor. I ofter my heartbeat as hope to others but I truly do not understand why people see hope in me. Me, in this broken body. I try. I try so hard. But it’s all so exhausting and I can only do so much.
I’m stuck. Why are things not different? Why do the people who could bring about real change ignore our pleas for help? Why do we have to beg for children’s lives to be saved? I will never understand. The doors slammed shut in our faces. Hope receding, and then growing, and then receding again.
I am so tired. I’m so tired of repeating myself ad nauseum. Look! Look, people! Here’s a dying child! He doesn’t have to die. Here’s another. She doesn’t either. But reality is reality, and they die. They’re dead. Because of you. Because you didn’t listen. Because you thought, oh it doesn’t affect me (YET!) so it doesn’t matter.
But what happens if it does affect you? You will wish you have started today. No, yesterday. Maybe even years ago. If you had, maybe there would be a cure by the time you need it.
See. See! That is the point. That was always the point.
We are not just fighting for the children who are sick now, but for the children of tomorrow who will be sick. And you were silent. You say you did not know, but oh, you did! You just chose to look away. Too sad. Too hard.
What if it was you who was too sad for people to deal with? What if you were too hard?
Think about it.
285 children are diagnosed with cancer every single day.
Every single day, there is a lottery no one wants to play but are forced to. If your name is not drawn, you get to breathe again. If it is, your world, and your child’s world, will turn upside down and inside out.
Is that what you want? You want it to be too late?
Call your senators and ask them to support the #STARAct.
That’s a start. That would be fighting for the kids, getting them what they need. And maybe one day, the word “survivor” won’t feel wrong to me.