"Why Me"? Chapter 5

You might be wondering if this blog is going to turn into a pity party.

I think it very easily could have, but would you have really blamed me if that is what this was?

After all, I am only 55, I live a good life, and I have much more to give... So why DID I get ALS?

The fact is, I don’t have time for that shit. No time to pity myself and be mad at the world or at God. You didn’t do this to me. The world didn’t do this to me. God didn’t do this to me or any other person, so why am I going to waste my time blaming life for my situation? Shit happens and you move on.

Recently I watched two movies, Father Stu and Tuesdays With Morrie (I read that book first). After, I thought to myself, "why me?" There are men like Father Stu and Morrie who had lives worth sharing, so I asked Laura, "what makes my story worth telling?” These two men were very impactful at their time and in their worlds, and they made a difference in the overall ALS story. Their stories continue to bring light to ALS.

Then there are people like Brian Wallach and his wife, Sandra Abrevaya, the founders of I AM ALS. Their organization is revolutionizing how we cure ALS by empowering and mobilizing patients, engaging with policy-makers, and offering vital resources for people impacted by ALS.

Frank Carlson, diagnosed with ALS at age 27, founded ALS.Org with the determination to help ease the incredible financial burden and maintain the independence and dignity of others with ALS.

Lou Gehrig was diagnosed with ALS on his 36th birthday during a visit with his wife Eleanor to the Mayo Clinic in Rochester, Minnesota, on June 19, 1939. Recently, on June 2, 2021, Major League Baseball (MLB) launched the inaugural Lou Gehrig Day across the MLB network. This day, to be celebrated each year on Gehrig’s birthday, is intended to honor the famed “Iron Horse” and raise nationwide awareness of ALS while engaging more people in the fight against this insidious disease.

My brother in law Jesse passed away two years ago. Jesse was a beautiful man of God and if you had ever met him, you would never forget him. As a young boy, Jesse suffered a brain injury. Although he was still very functional, he had limitations with reading, writing, driving and other things. Jesse never let any of his disabilities stop him from living life “All In”. That was his motto - “All In” like playing poker when you shove all your chips forward on a bet. If you asked Jesse to do something or tell him he was in charge, you just stand back because he left nothing on the table. Jesse loved his church and community, he was always volunteering somewhere or helping someone. He even wrote a song to Jesus that he would walk around singing. We all know it and whenever I think of him I start singing it in my head. But who is here to tell his story? Where are the movies and books about my God-loving brother who left his mark everywhere he went?

So I ask myself again, “why me?” Why does my story matter enough that you are sitting on your computer, phone, or tablet reading my story? I surely did not accomplish anything close to what the aforementioned have.

Then Laura looked at me and said, “because you matter and you need to tell your story."

I thought about that for a minute and decided she is right (but don’t tell I said that). I do matter. We all matter and I am going to use the time I have left - whether it be two months or twenty years - to tell my story. So I plan to tell my story to whoever will listen in hopes that I can teach one more person about ALS. Think about this for a moment - how many of you knew who Morrie, Father Stu, Brian Wallach, Sandra Abrevaya and Frank Carlson were before reading this right now? How many of you did the “Ice Bucket Challenge“ and knew what it was or donated to ALS.Org when you did it? Without our stories being told would anyone know what ALS is? Would organizations raise money to fight against ALS? If me telling my “why me” raised awareness for one more person, $10 more or inspire one person to tell their story that may influence another person for their cause, then I am going to not only tell my story but shout it out loud. Our legacy is made up of our values, beliefs, accomplishments and how we give back. If we do not share our stories then we just die. Who wants that? Not me. I want my legacy to be filled with service, love, being a good father and husband. I want my story to reach the world and hope one day someone sitting behind their computer is inspired to write their very own WHY ME story.