Nontraditional Inspiration

It’s our tradition — Christmas Eve is always spent with my Italian father’s side of the family. We drink plenty of red wine, we devour my grandmother’s pastas, fish dishes and desserts, and, most importantly, we talk… a lot. While daily life can often be a tangled web of unexpected challenges and never ending to-do lists, for me, this night has always served as an escape and a constant source of joy.

Unfortunately, the one piece of this tradition that hasn’t remained constant is my Uncle Arthur’s health; he was diagnosed with ALS in the summer of 2014. While his condition initially revealed itself via slurred speech, it has progressed down a much more debilitating path over the past sixteen months.

This disease has sapped Arthur’s active lifestyle and gregarious speech while time now holds him hostage. Unable to walk safely and communicate clearly, Arthur uses an electric wheelchair to zoom around the house and a text-to-talk app to communicate.

While Arthur’s physical condition has dimmed, his mental state is more radiant than ever. He has become increasingly determined to publicize the disease and has his whole town supporting his battle with ALS. He has even participated in a “Tough Mudder” with friends flinging him through the course in his wheelchair.

Given his love for gardening and pickling, Arthur started a non-profit organization called PICKALS (note the ‘ALS’ in the name), bottling some of the crunchiest and unabashedly garlic-infused cukes you’ve ever tasted. The company has grown so much that they had to move the bottling process from their kitchen to an actual factory, outsource the branding and create a merchandise section on the website.

“Pickals is blowing up!” Arthur typed to me during one of our chats that night, “Think Newman’s Own!”

In past years, Arthur cooked his famous crab cakes, mixed cocktails for the family, and kept the kitchen lively. Everyone congregated around him. While he couldn’t do any of those things this year, everyone still flocked to Arthur’s positive energy. At one point, he was doing ‘donuts’ in his wheelchair in front of the Christmas tree, one hand in the air. Their dog, Ollie, barked ferociously and attacked his spinning wheels; I wasn’t the only one not yet used to the wheelchair. He still manages to keep things lively, I thought.

As we said our goodbyes in the foyer with the 2015 tradition coming to a close, I gave Arthur a drawn out hug. It’s an embrace I won’t soon forget. I felt so proud of his approach toward every day life and his deep desire to fight this disease openly.

I wanted to thank him for his inspiration, possibly project something with meaning before walking out the door. I had yet to muster a word by the time he finished typing with his right thumb. Suddenly the robotically British voice from his iPhone spoke, saying, “Tell your friends to like us on Facebook!”

“We call him Gerard,” said my Aunt. It was a classic Arthur move, leaving us with a laugh as we walked out the door.

When my wife and I arrived home, we reflected on the night. We shared snippets of conversations we had with my relatives but we talked about Arthur, mostly.

“You know, Arthur was the best possible person to be diagnosed with ALS,” she said.

I replayed the sentence in my head, once, then twice. “What do you mean?” I asked.

“I mean there is no one else who could approach this disease… Approach life every day the way he does. He has this energy that illuminates the room, he smiles more than everyone else despite what he’s facing, and he just won’t quit. His fight is so inspiring.”

I agreed, wholeheartedly.

Arthur’s condition reminds me that while things may seem constant in life, they aren’t. That incremental changes every day can add up to large changes down the road. And, most importantly, that inspiration can be found in the most unexpected places.

I always knew that my Uncle Arthur had been a driving force behind my love for our family’s Christmas Eve tradition. However, I never could have predicted that his attitude towards a devastating disease would inspire me to approach daily life with newfound appreciation and enthusiasm.

I hope that you find Arthur’s story as inspiring as I do. You can view more details via the following links:

And… as Gerard would say, you can always like Pickals on Facebook!

https://www.facebook.com/pickals/