Three years ago my step father, Frank, passed away from complications of ALS. The disease robbed him of his speech, his ability to eat, and the use of his arms before it eventually took his life. I’m still not very comfortable talking about how cruel ALS proved to be when it struck my family.

As the #alsicebucketchallenge grows exponentially it seems necessary pin down how I feel about this social media madness. I feel annoyed that my newsfeed is overrun with these posts. I feel embarrassed for all the people that drop the bucket on their heads. I feel a pull at my chest each time I hear or read those letters “ALS”.

That’s where I get stuck. That pull at my chest. ALS feels like a swear word. I don’t like saying. I don’t like hearing. It doesn’t sound like any other disease to me. It sounds hopeless. People forget when they post these laughing and shrieking and even stoic declarations of support that real people have ALS. Friends and family members of ALS victims see these posts.

This man doesn’t know ALS will take him before he turns 60: Frank

On the other side, as I’m sure Frank would argue, this has generated a tremendous amount of money and support for the cause. For all the pulls at my chest and all the annoyances, that’s certainly worth something.

If you’ve been challenged or you’d just like to donate to a good cause let me suggest donating to the Robert J. Packard Center at John’s Hopkins University. Their focus is research over awareness and that research is damn impressive. 

Who says silliness can’t benefit a good cause?