This year I hit two milestones in my life. I turned 55 and I’ve lived with ALS for five years. Thus, triple 5’s, 55+5.
I have lived 55 years
Looking back over my life, I have been truly blessed. I grew up in a great home where love was expressed in real ways. I married my best friend 33 years ago and I’m still in love with her. We have four awesome adult children who are married to wonderful spouses.
Sheila and I lived in Brno, Czech Republic for nearly a year. During that time, we visited Prague, Krakov, Budapest, Vienna, and so many other places. We had the sobering experience of seeing Auschwitz firsthand. One thing that was very cool, was visiting many churches throughout the region and seeing the nativity scenes. A visit to vineyards was also fun with our hosts. Overall, it was a great opportunity, and we enjoyed our time there.
Some other highlights include being a coach at some point for all my kids in basketball and soccer. I was a Boy Scouts Scoutmaster for ten years.
My career went through a major shift early on. After seven years of college, we were planning to return to the Czech Republic as missionaries. God had other plans. With the help of my wife and her father, I learned to create applications using Microsoft Access. This launched my career in data and business intelligence. I became a very active member in the data community culminating in a Microsoft MVP award. It’s been quite a ride.
Throughout the years, I have been blessed with lifelong friends from high school, college, church, and work. These friends have camped with us, celebrated family events, and traveled with us. We have experienced life together which has been great.
Fifty five years of family and friends, life experiences, and work accomplishments. I have lived a full life. God’s hand is evident through it all. My life has been anchored in faith and God’s grace and mercy.
Living with ALS for five years
Five years ago, I started experiencing noticeable symptoms of ALS in my hands and arms. A couple of months later, a hand specialist diagnosed the possibility of ALS. I was crushed with that as a possibility. A month later, we broke the news to our kids.
Sheila and I had planned to go on a mission trip to Kenya. With the risk of a COVID-19 issue, we decided to forego that trip. It was the first thing ALS stole from us. However, we took that time to travel through Florida and discuss and pray about the future. It was the best thing for us. I crossed a big thing off my bucket list when we enjoyed a sunset cruise on the Jolly 2 Rover out Key West.
The next year was a whirlwind. We bought a house in Frankfort, Kentucky, while still living in Minnesota. We moved to be closer to my parents and warmer weather. I was “officially” diagnosed with ALS later that year at UK Healthcare. By this time, I could not drive or travel alone because it was unsafe.
Since that time, I have lost so much. I had to retire and go on disability. I can’t walk or breathe without mechanical support. One of the things I miss most is the ability to talk. Despite all that, I am still thankful for the blessings God has given me in the midst of so much loss.
When I was first dealing with all this, Sheila and I trusted that God has a plan for us. I may not know what it is, but that is faith. It is why I choose to live with ALS. Typical life expectancy is 2-5 years. I’m still here so God isn’t finished with me yet.
Leave a Reply