As if being diagnosed with a terminal disease (for the record, I have no intention of letting this beat me) isn't bad enough, it is a disease that the general public has never heard of or knows very little about. I can honestly admit that I never had feelings of anger after my diagnosis. I realize that is uncommon, but it is the truth. Now, I am not saying that anger was never part of the equation; it only came to show its face once it was time to start telling the world I had ALS and immediately had to explain exactly what that meant.
I remember the very first stranger that I told. It was on February 16, 2012, one day after my diagnosis. I was still living a very normal life. I was 30-years-old, single, and the director of communications for a rapidly growing young company in Chicago. However, one daily activity had become very difficult -- shaving. Fortunately for me, I can grow a great beard and only needed to shave once or twice a week to maintain that urban mountain man look.
So there I was at a barbershop getting a hot shave. The barber, just like every other barber on the planet, started with small talk. What do you do? Where do you live? Do you have ALS? I'm kidding! That would've made everything much easier. But here I was telling a complete stranger that I had been diagnosed with ALS just one day before. Admittedly, I may have tiptoed around those three horrible letters. "I was diagnosed with a motor neuron disease," is probably what came out of my mouth. The problem with that is, what the hell does that mean? I remember fumbling over my words trying to explain what this disease is and does to the human body. I finally said, "It's ALS or Lou Gehrig's disease."
To say he had no reaction would be unfair. He reacted in one of the two different ways people do: a modest tilt of the head, followed by the obligatory, "I'm really sorry to hear that, but I'm sure you'll be okay." Those who use this model are simply uninformed and do not want to run the risk of looking the part. We have all been there before. I know I have. Not exactly sure what that acronym used in a meeting stands for, but nod your head with the utmost confidence? Sure you have.
The second way people react upon hearing, "I have ALS," is far more direct. This group knows exactly what that means. This group knows, even if they don't know the specifics, that this is a very bad thing. This group can be comforting but downright depressing as well. Of course it is nice to know that a definition of the disease is not necessary, but neither is it the epically sad change in mood.
A hybrid of the two groups would be ideal. I want the innocence and hope of the first group blended with the knowledge and understanding of the second group. I want every human being on this planet to not only know what the letters ALS stands for, but to take action to eliminate them. I remember thinking, I worked on Madison Avenue, I know marketing, I found the importance of brand engagement, I just have to figure out a way to make ALS a household name.
What may have started from a place of selfishness and frustration has become a place I am most proud to be. It is a place of strength, fight, community: A Life Story Foundation.