If you know me at all, you know one of the great passions in my life is reading. You should also know that one of my all-time favorite book series — okay, my FAVORITE series — is the Harry Potter series by J.K Rowling. One thing that struck me on my first read was that Harry always called Voldemort (the force of evil in these stories) by his name. He did not fear saying Voldemort aloud, as the other characters did. In fact, Hogwarts Headmaster Albus Dumbledore said this to Harry: “Call him Voldemort, Harry. Always use the proper name for things. Fear of a name increases fear of the thing itself.”
I’ve taken this advice to heart. Yes, I know this is a fantasy series, and the characters are not real. But the characters who reside in the Harry Potter series offer great insight into humanity. They teach about bravery, love, kindness. And Harry, most of all, teaches readers how to face the hardest of things in this world with great courage.
The past few years have been hard on my family. On December 2, 2016, my beloved daughter was diagnosed with glioblastoma, a very aggressive type of brain cancer. She was twelve. Her illness, her brave fight and her death have taught me the same lesson as in the Harry Potter books: Say the name — the name of what you’re facing, the name of what you’re feeling. So here goes. Here are four words that I refuse to talk around, to use a euphemism for — cancer, grief, love, death. These are words that I choose to say aloud, even though they sometimes breed discomfort.
When Ally first came home from the hospital after two brain surgeries within one week, we had a new word in our family: Cancer. I hate cancer. I wish we could abolish the word as well as the disease. However, I immediately felt that if we could say the word cancer aloud it would reduce people’s fear and give the word some normalcy. Cancer. Yeah, we’re dealing with cancer, but we are still getting up, living life, trying to be decent humans. When people asked me what was wrong with Ally, I told them she had cancer. I didn’t — couldn’t — sugar coat it. She had cancer, and we were fighting it. That was the truth, and I didn’t see why I would want to hide it.
Another word I have come to use regularly is grief. People don’t really like to talk about grief, but I use this word all of the time because it is true to my life at the moment. To be fair, I’ve been grieving for nearly four years — for the loss of Ally’s childhood, for our family’s sense of normalcy, and now — for Ally’s death. Turns out, you’re not exactly the most popular person in social circles when you go around explaining that you are wrestling with grief and that you try to walk through it every day. This conversation is uncomfortable. And yet, I think it’s important to let people know that GRIEF is what I’m experiencing. It’s grief that tries to keep me in bed; it’s grief that makes me cry as I sit in the parking lot preparing to go into work. I feel like it’s inauthentic to avoid the word. I am grieving, and I refuse to lie about it.
My next word is love, and perhaps this is the one bright spot of this piece. When you go through an unprecedented tragedy in your life, you realize how fleeting life truly is. You realize the importance of love — love of self, love of others, love of life. For me, this manifests in how I talk to the people in my life. I tell pretty much everyone that I love them because…I do. Tragedy sometimes allows for the strangest of emotions, and when you lose someone you loved, you want to hold on that much harder to the other people in your life. So I tell my parents, my friends, my co-workers, the guy that carded me at the liquor store that I love them, and I mean it. I am no longer willing to use this word sparingly.
Death is another word I use with regularity. I speak of Ally’s death. I try not to say “my daughter passed away” unless I’m talking to children because the truth is, my daughter died. I hate this word, as it is a constant, sad reminder. But it is true. And I made a decision a long time ago to speak my truth. I try to speak of Ally’s death with courage and honestly as it is part of my journey. It makes no sense to me to try to soften the blow of my loss by saying Ally “passed away.” She died. She fought. She was loved. And I’m not going to discount her short life by using politically correct terminology.
Thank you, Harry Potter, for teaching me to be honest, to say the precise word, to look fear in the eye and not cower. And thank you, Ally Baier, for teaching me the same things. My life will continue to be better — more honest and truthful and courageous — by your examples.