As you may or may not know, my dad passed from ALS in March. I was there. In fact, my siblings were all there that day, which was interesting since it was the first time we were all together since Christmas. I kept thinking to myself that day, this all seems too perfect. And, well, sadly, it was. But I’m glad we all got to spend time with him that day. I miss him very much but I’m glad he’s no longer suffering. I was going back and thinking about all the things that have happened this past year or so. I’ve also just been thinking about ALS, in general.
For those of you who don’t know, ALS (Amyotrophic lateral sclerosis), or Lou Gherig’s disease, is a devastating disease that progressively takes away the ability to use your muscles. You lose your ability to walk, use your arms and ultimately breathe. It’s a death sentence. I’ve watched my Grandpa (when I was 5) and my dad now go through it. It’s not typically genetic, but is in a small percentage of cases. My Grandpa’s brother also passed from the disease. My dad’s sister also passed from the disease, this same year, months before my dad. I was glad I had the chance to drive him to the funeral, despite how sad it was.
ALS has been around for a while, and there is still no cure. It was first found in 1869, it came to national prominence in the US when Lou Gherig was diagnosed in 1939, and again during the ice bucket challenge around the summer of 2014. About 6,000 American are diagnosed every year, which is why it doesn’t get the coverage of other diseases, but if you or a loved one have been through it, you understand just how horrible it is. It was also featured in the documentary Gleason, about former New Orleans Saints player Steve Gleason who was diagnosed who was diagnosed in 2011. Another strange note: I saw this movie at the Sundance Film Festival in 2016 just a couple months before my dad was diagnosed. I was the only one from my group who made it to that screening. It actually helped prepare me for what I would go through with my dad just a few months later.
There has been progression in treatment and medication, but no cure, after all this time. I realize there are plenty of things to spend your money on. Plenty of charities out there. But if you’ve seen what ALS can do to a loved one, I urge you to join the cause. It’s devastating. I was devastated, and still am. But as a good friend of my dad’s told me at his funeral, “one foot after the other.” I had no doubt that’s what I would do, because I’m my dad’s son.
Oh, by the way, I moved to Chicago because I had an opportunity to do so in December, which also allowed me to be 3 hours from my dad which I used to my advantage to see him a lot over the past year and help as much as I could. He never got to see the place, unfortunately, but as I picked up some of his stuff and drove it up to my place in his van for 24 hours the week of his funeral to recharge and pick up my suit, I felt he was with me. I felt he finally saw the place. Months after I moved in, and after my dad passed, I looked up the ALS Association Chicago who I had exchanged some emails with as I signed up for the Walk to Defeat ALS. I was shocked to find out that their office was literally right across the street from my building. What are the chances, right?