Turning to God when it's time to get your affairs in order (by Randy Gregory)

The greatest joy of facing ALS has been solidifying my relationship with God and relying on Him completely. When your world is turned upside down and you are told to get your affairs in order because you have 2-5 years to live, where do you turn? I turned to God to fulfill the desires of my heart, particularly to sustain my life so I could be there for my five children. In April 2011, I had two adult children, a 14-year-old, a 7-year-old, and a 6-year-old. Embracing the responsibility of fatherhood, I trusted that God would allow me to complete my assignment according to His will.

Now, more than 13 years later, tonight, I had the chance to give advice to that former 14-year-old, now grown, about meeting his girlfriend's mother. God is truly awesome!

Right after being told to get my affairs in order, I thought, "ALS doesn't know me; I'm going to beat it!" At the time, one of my basketball heroes, Magic Johnson, had been living with AIDS for twenty years, so why couldn't I defeat this?

Over the years, God has shown His presence, refreshing my fight, providing ways to cope with the decline of my physical abilities, and helping me manage the loss of my ability to earn a living.

It's easy to succumb to the bleak outlook the world has for patients living with ALS (pALS). But no matter the situation, it is God who determines when our time is up on earth. We have the free will to choose between darkness and gloom or light and hope. The song "Sink or Swim" by One Republic captures this choice perfectly. For me, God's word, music, and sports refresh my spirit when negativity creeps in. Trust me, the challenges of ALS will come. Why let negativity occupy our thoughts when it can't change our circumstances? Instead, let's find joy in the things around us and fight every day to find a cure for ALS!

When faced with the decision to have a tracheostomy, I looked out from my hospital room at the beautiful mountains in Temecula, California. Those mountains, a testament to God's creation, inspired me to appreciate the trachea in the same way. I could continue to struggle with choking on food and saliva, or I could have the procedure and see how the trachea would help me. I already had a feeding tube, so I decided to see how these medical devices could improve my life. They certainly beat the alternative.

More devices entered my life to keep me in the fight: the Tobiidynavox computer for communication and the Cough Assist Machine for clearing secretions from my throat, for which I am extremely grateful. The Eye Gaze system on the computer was a significant improvement over the alphabet chart I had been using. My years as a college baseball player had trained my eyesight to pick up the spin on pitches, so why not use that skill? I began using the Cough Assist Machine about three years after my diagnosis to help me cough up secretions. It was far better than using a straw down my throat, which sometimes got stuck in my lung. Such a lovely feeling, lol!

Having worked since the age of 15, I was used to relying on my own abilities to make a living. But with ALS, those abilities became irrelevant. Disability retirement and social security income weren't enough to cover monthly living expenses and around-the-clock caregiver costs. I depended on God to make a way, and He did. I can't explain the success of a three-year Go Fund Me campaign organized by friends I made throughout my career any other way.

ALS is a thief! It robs one's physical abilities, but don't let it take your heart, attitude, and will to fight. I'm not suggesting that life with ALS is easy—God knows it's not. Life isn't easy, but we still live it. We didn't sign up for ALS, just like we didn't sign up for other life challenges. But as we have done with life's other challenges, we learn to fight and overcome. Thank God for IAA, which gives us the opportunity to fight for life!