July 6, 2012
I’ve been watching from afar over the past few months as someone I went to high school with has been fighting tirelessly to save her seven year old daughter from Neuroblastoma cancer. Recently, I watched in disbelief as she chronicled her daughter’s last days, and then on June 28th, her final breaths.
I say from afar because I mean just that. We are not close in our adult life. We had a tumultuous friendship in high school wrought with fights and manipulation, but sprinkled with some of the most fun I have ever had. She was a spirited, boisterous, irreverent young woman – just the type of personality I needed to pull me from my rough waters of mean girls and stupid boys. We clicked in chemistry class and I was immediately drawn to her no-nonsense style and her wicked sense of humor. One might call her a bad influence, but she was truly a good person and inspired me to relax a little and find more fun in my teenage life.
That year, we filled our days quoting the most recent Saturday Night Live skits and our weekends memorizing all of the lines to The Breakfast Club. We had inside jokes… “Cheese and Rice!” instead of “Jesus Christ!”… after all, you can’t be teenage friends if you don’t have some ridiculous joke to define your relationship. There was also a fair amount of inappropriate fun including skipping class, stealing a rubber chicken key chain from Spencer’s at the mall, and making a vodka Screwdriver and eating it with Captain Crunch in place of the milk.
Our friendship was exhilarating and I loved it. But the reason our short friendship will always stay with me is because of a road trip that we took together. I was allowed to go with her to visit her sister on the Ohio University campus. I didn’t know much about OU other than a couple of ex-boyfriends went there, so naturally I was intrigued. We sped off early that morning and headed two and a half hours south to Appalachia. I had never been to that part of Ohio, and the minute I saw the campus peek over the rolling foothills, I was smitten. I was fifteen and had never seen a college campus in full swing. The buildings were big! The campus was big! The boys were so big! It was amazing. I was where I needed to be.
On our ride down, she played some music that I had never heard, but I loved it. We stopped by a funky music store at the end of our trip and she found the tape for me to buy – the Eagles, Hotel California. We played it the whole way back singing and laughing. I came home from that trip changed. Changed not because I now knew the words to every song on that album, but I knew where I was headed when high school ended in two years.
I can’t say exactly why we grew apart – I suspect it was typical high school obstructions like boys, new friends, new interests. We both went to OU and have since moved away from our hometowns. I hadn’t thought about her at all until Facebook kept suggesting a friend for me. I didn’t recognize the name, so I never paid that much attention to it. But one day, I took a second glance and it was her. All of the memories came rushing back and I was interested to see how she was doing.
I clicked on her page and within moments, I stopped short. It didn’t take long to see that her daughter was fighting a very rare pediatric cancer, Neuroblastoma. It’s a cancer with very few treatment options and a very low survival rate. As I read some of her journal entries, I learned that her sweet girl was diagnosed when she was two and she was now going on seven. Five years of ups and downs trying everything in their power to make her cancer free. But what struck me was how she was managing the situation. I could sense the same tenacity, fierceness and even humor in her approach. She was fighting, advocating, caretaking, organizing, and screaming to anyone who would listen about the need to fund more research for this cancer. She started a foundation to fund research, and elevated the topic not just in her local community but all over. Her journal posts were raw, honest and public. That’s how I’ve come to know all of this – we’re not friends, but I found myself silently rooting her on and drawn to her situation from a place of respect for the person I was glad to know years ago.
I’ve had to check myself as I have kept up with the Foundation’s updates. See, I feel that humans have a voyeuristic tendency to rush to the scene of an accident and then find relief that it’s not them. There’s a fine line between good intention and selfish reflection when it comes to someone else’s struggle or crisis.
A few days after her daughter passed, she wrote another journal entry detailing what it was like to lose her. In the entry, she mentioned her reaction to some of the comments people were making. Even with the best intention, some people just miss the mark on what to say to someone who has lost a loved one. And believe me, I don’t know the perfect thing to say.
I’ve noticed that a lot of people start their sentences about someone else’s loss with the word I. I am so sorry for your loss. I am at a loss for words. I know they are in a better place. I cannot imagine how you must be feeling. And so on. I’m sure I’m guilty of it. I feel that despite the best intentions, sentences that start with “I” inadvertently make the statement about you, not them. People spend so much time thinking about what to say and truly thinking good thoughts for the grieving person, and the first sentence turns the table. A sentence that starts with “I” is now about how YOU are feeling, how YOU are uncomfortable and don’t know what to say, how YOU wish you could be the one who offers the most comforting words, how YOU can’t imagine how they feel because thank goodness this has never happened to you. An extension of condolence is an acknowledgement of your presence, support and an offering of comfort. It’s not an opportunity to tell the person all the things you don’t know – what to say, how they feel, what it feels like, etc.
Maybe we should try to lose ourselves when it comes to someone else’s loss. Start our sentences with anything but the word I.
So, what would I say to this person?
You and your daughter have changed the conversation about cancer research.
Your unwillingness to settle for status quo is going to save someone else’s life.
Your daughter did not deserve this. Neither did you.
Have I actually said anything to her? No. In the world of social media, I have just been an onlooker, hoping with every intermittent click on the website to see good news. She needs her friends and her family right now.
She needs the rest of us to care so that the momentum she started continues and the conversation about research for pediatric cancer is elevated. Money talks and research cures.
I am resolute that childhood cancer is everyone’s problem, not just the problem of those with a child afflicted by the disease. Because at some point, it will be someone you know and then you’ll wish there was more… more advocacy, more awareness, more research, more money. Consider visiting the Isabella Santos Foundation on Facebook or going to the website at www.isabellasantosfoundation.com to learn more. Or get to know your local Children’s hospital and find out how you can help. At the end of the day, it’s not about what you say after someone experiences a loss, it’s about what you can do to help prevent it from ever happening.