Happy Friday everyone! I thought, for this Friday post, that I would address something that has been making its rounds on everyone’s social media – the Ice Bucket Challenge, benefiting ALS research. I know, I know – you’re getting sick of seeing the videos. Personally, I’m a little tired of BuzzFeed saying that every celebrity video is the best one that’s been made. In any case, you shouldn’t be tired of this challenge.
Personally, I was challenged by K. I talked with her about it, and told her that I may or may not make a video (as of yet, I have not, but it’s been a busy week), but I would donate, regardless. Which I have gladly done.
This is why this is important to me. It all centers around a girl named Lola, from Eveleth, Minnesota.
Lola is a college girl who just wants to play hockey at her dad’s alma mater. Unfortunately, there’s only a men’s team at the small private school in West Michigan. So she tries out, and her speed and skills get her a spot on the team. All she wants to do is make her father proud. Why? Why is she doing all of this work, when she could have played women’s hockey at a Minnesota college? Because her dad has ALS, and it means the world to him that she’s playing on his team (where he’s still the all-time leading scorer), even though he can’t communicate that sentiment verbally anymore.
I should probably also tell you that Lola is fictional. She was created in my head during NaNoWriMo in 2011. There are a lot of other elements to the story, but that’s the main topic – Lola wants to make her father proud. And her father is dying from ALS.
What made me research ALS back in 2011, before this Ice Bucket Challenge that put the disease and its lack of cure on the map? Well, it all goes back to a baseball player named Lou Gehrig. ALS ended Gehrig’s baseball career, and the disease has been nicknamed in his honor (whether or not that is truly an honor is a whole different topic), probably because he has been the most (and first) famous person who was diagnosed and died from it. We are a baseball family, so I’ve always known about the disease. And at that time in my life, neurodegenerative diseases posed a great interest to me, as a scientist. That is one thing I regret about leaving graduate school – I never got to be part of any research looking for a cure for anything. I went in wanting to know more about neurodegeneration, which led me to Parkinson’s, Huntington’s, and eventually, ALS. By the time I realized it would be best for me to just leave, I wanted to leave with some sort of legacy. So I did some extensive research and created this story centered around a girl whose father is dying from ALS.
All of this is why finding a cure for ALS is near and dear to my heart. You may think that my story doesn’t really count, because it’s fictional. On the contrary, sometimes it is fiction that shines a brighter light on the issues of the world than real life. I wanted to create an unforgettable character, someone who was a force, even though he was dying. That was how I envisioned Lola’s dad. And, when I went back and reread the first quarter of that story today, that’s how he is still (hopefully) portrayed.
Maybe one day, I’ll get that one published, too. And then people can read it, and someone can find that elusive cure. Hopefully.
Have a good weekend, and please, don’t gripe about the Ice Bucket Challenge videos. Every person makes a difference.