This is my “ALS: A Love Story.” It’s about my family, my Galentines.
I was diagnosed with ALS in April of 2017. My wife and I will have been married 15 years this coming May.
When your last name is GALENTINE – “Just like Valentine but with a G”- Valentine’s Day becomes Galentine’s Day. It’s the one day of the year that most people pronounce my last name right!
I have been a songwriter in Nashville for nearly 25 years. I go by “Bryan Wayne” in the music world. It is only fitting that I met the love of my life because of a song I wrote.
I had written a song with my bud Big Kenny (Big & Rich) and neither one of us had anything major happening in our careers yet so we were both short on $$$. A friend suggested we record with a guy who had a little home studio in his townhouse. It just so happened that his platonic roommate was my future wife.
And even crazier, the very first day I met her she was home from work sick! So one of my best days was literally a day when she was at her worst.
The song was called “Fly” and it’s all about chasing dreams, appreciating every moment, living life to the fullest, etc. Thankfully it wasn’t a song about pickup trucks, drinking, and partying in a field. We ended up giving out CDs of the song as a gift on our wedding day. And I have recorded new version of the song for an upcoming record I’m working on, where I’m putting MY vocals on songs I’ve written over the years, in the event that ALS unfortunately takes away my ability to speak, and sing.
I am coming up on one year since my diagnosis. And I won’t lie, it’s terrifying. I know the road ahead is not going to be easy. Barring a cure, I know the odds are not in my favor that I will live to see my sons graduate high school, let alone college.
But ALS has taught me to try my best, to not take a single second for granted. Some days it’s easier said than done, but I’m trying.
And it’s taught me to better appreciate my wife, my sons, my family, my friends, and life in general. I wish I had gotten that wake-up call some other way, but if it took getting ALS to wake me up, so be it.
I have decided instead of being angry and bitter about my diagnosis, I am going to take this opportunity to remind my friends and family how fleeting life is, and how important it is to appreciate every second.