I am Gary Godfrey

living with ALS


This journey has brought new, enriching experiences that we never would have experienced. The journey has been challenging but fulfilling.

I was diagnosed on January 8, 2019. I was experiencing weakness in my arm. I noticed it when I was playing basketball. I was shooting free throws, and I could not hit the rim. At first, I thought it was because I have not played in 25 years, because I was traveling so much. We realized this was much more than me being fat and out of shape.

We visited several doctors. The consensus was I had an impingement in my neck. It’s important to note I didn’t have any pain associated with the weakness. The doctors recommended cervical fusion surgery which in hindsight wasn’t needed. I played golf with my best friends and Sir Charles in the Bruce / Barkley Tournament right before surgery. I am glad that I had my priorities straight because little did I know that would be the last round of golf I would play.

After the surgery and rehab, the arm weakness wasn’t getting better. I went through many tests, pricks, MRIs and ended up at the Emory ALS Clinic. I met with a highly regarded ALS clinician who told me “I wish I could tell you something else, but you have ALS.” I was relieved to finally know. After all, we had earned our medical degree from the University of Google and were kind of expecting it.

Once I heard those words my mind went into problem-solving mode. After all, this is what I did for my clients during my career. However, now I was the client and we just received a diagnosis that had no cure. Not once did I spend any energy on “why me or how did this happen?” In my mind, that is wasted energy.

I had a choice; I could spend my energy on fighting/battling ALS or I could focus on living with ALS. I chose the latter. That’s when all of my Auburn Basketball experiences kicked in. What did I have to do to stay on the court (probably not the best metaphor since I wasn’t on the court that much during my career at Auburn) or in this case, what do I have to do to live a full life with ALS.

To borrow a famous Michael Jackson quote with one slight alteration, “I’m a [liver] not a fighter.”

One would think losing the ability to walk, talk, eat, and inability to use arms and hands would be the hardest part of this journey. For me, it was not the case. The hardest part is losing my independence and becoming 100% dependent on others for every part of daily living. Learning to accept help from others and ask for help.

My life has been blessed with incredible experiences, many with family and friends. Because of this, I don’t miss what I am not able to do anymore. I tend to focus on what I can do. I do miss simple things like walking the dog or hugging Carol or holding hands.

This journey has brought new, enriching experiences that we never would have experienced. The journey has been challenging but fulfilling.

As I said earlier, I am not trying to fight ALS. I am not in a battle nor am I angry with ALS. I choose to live with ALS. I have a lot to live for and that keeps me going in a positive manner.

I know that God has a plan for me. I believe there is a purpose that God wants me to serve. I believe the purpose is to share how important today is and trying to make a difference in this world we live in.

When you are facing a terminal disease there comes a clarity on how important each day is. You cannot change yesterday, and tomorrow is not guaranteed. So each day is a blessing. I did not understand that when I was caught up in daily activities. I have realized how much joy there is having a positive impact on someone or something each day. Therefore, I try to make each day my best day yet. My best days are when I can make a difference in someone’s life. As I said earlier, I believe that is the purpose God wants me to serve. I want to share my message to everyone I can reach.

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