In memory of Bryan Wayne Galentine
someone we've lost to ALS
ALS changes your life in an instant. …ALS isn’t who I am. It does not define me.
ALS changes your life in an instant. My world was turned upside down when after three opinions, I was officially diagnosed with Amyotrophic Lateral Sclerosis (ALS) on April 6, 2017. It was devastating to hear, and it took me a long time before I was able to accept the new road that lay ahead of me. My full name is Bryan Wayne Galentine, but folks in Music Land, and everyone in my circle of family and friends, know me as Bryan Wayne, or “BWayne” (like JLo)! I live in Nashville, Tennessee, with my amazing wife, Staci, and our two awesome sons, Grayson (14) and Bennett (12). I’ve been fortunate enough to call myself a “professional” songwriter for nearly 25 years. When I first received the diagnosis, countless questions paraded through my mind: What the heck is ALS? How long do I have? Will my kids get it? How will I continue to provide for my family? How will I pay for treatment? Will everything in my life just stop? What will I become? The answers to these questions came after I realized that, despite the fact that the diagnosis was mine alone, I was certainly not alone. It was first through family, then through friends and foundations, that I began to build networks of support and eventually became an advocate. And as for the question, “What will I become?” I realized that I will be exactly the same person I’ve always been and will always be: a father, a husband, a friend and musician. ALS isn’t who I am. It does not define me.
Knowing that I would be notably limited in my physical abilities to work, I immediately took on finding assistance through grants and elsewhere as my new “job,” which would provide a way to still support my family when I might no longer be able to do so. I learned that there are many foundations and organizations that offer assistance to ALS families, and when I decided to take on the role of ALS Advocate, I made it my mission to “use my voice” and platform to point as many people as possible to resources.
ALS has become a reason to strengthen my community, make my voice heard and join others who are engaged in a fight for the cure. My wife has family in Spokane, Washington, which is where one of the most prominent faces of ALS, Steve Gleason of Team Gleason, is from. Barely one week into my journey, I received a care package from Team Gleason, and they have been inspiring and supporting me ever since.
Using the tools I have, like my songwriting, family and friends, I’m now in a position where I can embrace the support I have and offer support to those with similar battles. This is a disease which affects everybody. The Nashville music community has been my family, and when I made my diagnosis public, people and companies came out of the woodwork to offer help. I discovered organizations dedicated to ALS awareness which educated people on the disease and the hope that exists for future recovery.
I was able to find organizations like the Music Health Alliance, the Healthwell Foundation, Vanderbilt University Medical Center, and my local ALS Association chapter. Through the assistance of these amazing organizations, I was able to get help paying insurance premiums, get personalized care and even get essential equipment like my wheelchair.
Still, despite resources and support, ALS has a tendency to take away the very thing that can inspire a person. My main tools are my hands and my voice. Again, I didn’t allow ALS to take away my identity. Being a songwriter, and knowing that ALS might eventually steal my voice, I decided to make my own record so that my wife and sons, friends and family, and maybe even the world, could hear me forever, no matter what. I released the album “While You Wait” in November 2018. Check it out here.
I also have learned the power of using my voice to spread positivity, especially when facing the hardest times in your life. Before my diagnosis, I became tired of seeing so much division and negativity on my Facebook wall, so I decided to start my own page, Find the Good Stuff, where I share nothing but good stuff– positive videos, stories, quotes, memes, etc. And now that I’m living with a terminal disease, it has sort of become my motto. We all have to “find the good stuff.” We have to stay positive and not allow the bad stuff in the world to bring us down. Some days it’s easier than others to find the good stuff. But I continue to try. As I say, “The good stuff is out there … you just have to find it.”
This year, I received yet another opportunity to use my voice and give back to the community. In February, I was asked to join the community advisory council of I AM ALS made up of people closely affected by ALS. This team has been working diligently to accumulate as many avenues as possible to help patients and their support teams.
Joining this team was an important step on my own personal journey, as I could now connect with people who are not only living with the disease, but are also leading the charge in finding cures for it. I’m honored to be a part of a movement that I believe will truly accelerate our fight against ALS. That’s why I’ll keep fighting.