We largely measure our lives by the milestones we come across, both good and bad, happy and sad…graduations…birthdays…marriages…births and sadly, deaths.  A few of those experiences fundamentally change us in ways in which we may never have imagined.

In 2007, my uncle whom I had been very close with all my life, began to slur his speech. After several visits to many doctors, he was finally diagnosed with ALS. Shock. Confusion. Questions. Reality. Thus began the most heartbreaking and life-altering experience for him and everyone who loved him.

The progress of the disease was rapid affecting him from the “top down” meaning his respiratory effort, his ability to move his upper body, neck, jaw, everything just seized. He literally became a man trapped in a body that just would not move. One of the things about ALS that was so terrifying in our case and for many of those affected by ALS is that the mind is left untouched, but the body completely shuts down until it just can’t function anymore, with the possibility of death within a few years of diagnosis. There is no cure. There is no treatment.

My uncle faced each day with such a brave attitude and a solid determination to be the man we had always known and loved. A man who loved food had to eat through a stomach tube. He couldn’t speak, deferring his awful jokes and jovial spirit to a machine supplied by ALS resources to type out sentences. He couldn’t hold his first grandchild. He had to struggle with every ounce of energy he could muster to walk his daughter down the aisle at her wedding shortly before he could no longer walk. I will always have vivid memories of his little private corner set up for his suction machine.

My Uncle’s favorite thing in the world was having his whole family together on the holidays telling eyeroll-inducing, canny jokes, reminiscing about days past and enjoying his favorite coconut cream pie. Before he was bedridden, he would sit at the holiday table with all of us, looking at the pie that he could no longer even open his mouth to eat, and simply gave us a thumbs up to enjoy. He always did his best to be as much a part of life as he could before it was rapidly and cruelly taken from him. He became a prisoner in his own body until it just gave out.

This was my first up close and personal experience with ALS, and it has very much permeated my consciousness. Call it some type of spiritual intervention or just a timely happenstance that at this time I happened to make the acquaintance of someone who worked for the local ALS Chapter who then made the connection with me and my uncle from the support the chapter had offered my uncle and his family. From that point on my world changed. I gained a valued friend and discovered a path to do something with real meaning.

As a result of this intimate exposure to ALS, I make it a point to make The ALS Association the charity of my choice and remain involved. While we hear that something is “rare”, watching this happen to just one person, one father, one sister, one child, one spouse, one uncle…that is just one too many. ALS affected me long before I even knew what it was aside from a baseball legend having it. Look around you and take in how the world affects you and perhaps more importantly, how you can affect the world where you stand.

Thank you for visiting this site to pay tribute to my uncle and for your consideration of a gift to help join the fight. It is appreciated more than you will ever know. My uncle is somewhere eating his favorite bagel with a slice of cheese and tomato, telling a terrible joke and smiling. That is what I choose to believe.