This is one of the reasons I feel fortunate to experience life alongside our son, Alex. He gets it and works to spread his understanding as much as he can, despite his limitations. Like many young men living with Duchenne Muscular Dystrophy, he travels through life with a unique combination of adversity and joy. He cherishes human connection more than anyone I know. He looks beyond disappointment or worry or fear to live the moment with hope, happiness, and love. While he sees others run strong and free, he smiles in the face of immobility and constant pain. While he relies on others for nearly everything, he finds the joy in every day. While he lays in bed more often than not, he laughs for any occasion because he can. And, the beauty of it all is that given time, Alex will have anyone smiling and laughing along with him because…well, simply, why not?
I share these observations after attending the Louisville Supercon with Alex last weekend. Not counting two overnight visits to Cincinnati Children’s Hospital during the past month, this was Alex’s first overnight trip away from home in nearly two years. As you can imagine, he was ecstatic to get out of the house for a change of scenery. He looked forward to a mini-Dudes Trip filled with adventure, jokes, and late-night chats. He looked forward to meeting people from all walks of life, but especially celebrities he follows closely in movies and television. Although he worried mightily about his stubborn and aggravating back, he was determined…determined to make the trip despite his pain.
We stayed in a hotel a few blocks from the convention hall in downtown Louisville. Within moments of our arrival, not surprisingly, Alex befriended reservation desk clerks, hotel staff, and hotel guests while I unloaded the minivan. Every time I passed him, he was complimenting strangers and working his magic to get them to smile.
When we were ready to roll, I pulled Alex away from his new best friends and loaded him back into the minivan because it was pouring rain outside. Although we had planned to walk the short distance from our hotel, it is a well-known fact that a wet power wheelchair is no fun (nor are wet feet dangling beyond the umbrella’s protection). Somehow, we had to get closer to the convention hall and fast. The day was a-wasting!
While searching for parking, we stopped at a red light alongside an underprivileged man sitting in a wheelchair on a street corner. He had no legs and clutched an umbrella tightly to his chest while balancing a handwritten, cardboard sign. Despite the downpour, we could hear him singing.
“I’m siiiiiiinging in the rain. Just…siiiiinging in the rain.”
While Alex and I waited for the light to change, we made eye contact with the man.
He smiled and waved.
We politely smiled and waved in return.
“How’re we doing today, my friends?” he shouted loud enough for us to hear through our closed windows.
The man was a panhandler, no doubt. Homeless, possibly, as his wet sign declared. Yet, here he was on the corner, alone…and singing…in the rain. Say what you will about panhandling, but the scene hit a soft spot in our hearts. Perhaps it was the wheelchair connection. Perhaps it was our understanding of the mobility challenges the man likely faced every day. Perhaps it was the rain soaking him while we sat dry and protected. It could have been any number of reasons. But, for me, the look in his eyes said it all. They were friendly, happy, and singing…despite the rain.
I pushed a button to lower our minivan window. Before I could speak, he shouted again.
“A beautiful day to be outside, don’t you think!”
I chuckled along with him and replied. “Absolutely!”
We then handed the man some cash because anyone that happy and helping others to be happy deserves as much. As we then proceeded through the intersection, I glanced in the rear-view mirror to see him continuing his song. His enthusiasm to make the best of his difficult situation rang a familiar tune. I glanced to Alex in the rear-view mirror.
“What?” Alex countered.
I smiled and shook my head. “Oh, nothing…”
The parking garages around the convention were full, so we parked curbside to the event and I dropped off Alex about a block from the entrance. This meant leaving a young man alone on the sidewalk (under a building overhang) until I could return to escort him to the entrance and inside. The thought of bad parenting crossed my mind. The thought of milk cartons entered my thinking, too! But, hey, Alex was 19, I rationalized. Good to give him some personal space like all fine young men his age, I justified. I nervously watched him roll down the sidewalk with a young couple as I drove to find parking. What did I just do?
When I returned to the convention hall, a little damp and winded, Alex was nowhere in sight. A slight panic swept through me as I scanned the sidewalks and large atrium inside. The feeling soon disappeared when I found him inside and talking with a cosplay character dressed as Flash. I approached to smiles and laughter as if they had been long lost friends. They barely recognized my presence.
"Oh! Hi, Dad. This is Steve," Alex introduced.
So began our day inside the Louisville Supercon.
We picked up our passes and headed towards the main convention floor. We fought through the crowds and vast number of comic vendors. We contemplated t-shirts, posters, and pins. Before long, we found the celebrity section near a far wall and stood in disbelief at the number of celebrities sitting or standing by their tables, including…
Henry Winkler (Happy Days)
Alice Cooper (Hall of Fame Rocker)
Sam Jones (Flash Gordon)
John Wesley Shipp (The Flash)
Butch Patrick (The Munsters)
Brett Iwan (the voice of Mickey Mouse)
Steve Whitmire (voice of Kermit the Frog)
Charles Martinet (voice of Mario and Luigi)
Kevin Conroy (voice of Batman in animated series and PS4 games – Alex’s favorite)
James Mathis III (the voice of animated Black Panther series)
Ricou Browning (Creature from the Black Lagoon)
Ralph Macchio, William Zabka, and Martin Kove (The Karate Kid Movie)
Mark Henry, Sergeant Slaughter, Booker T, and Kane (WWE Stars)
Michael Rooker (Yondu in Guardians of the Galaxy)
Sean Gunn (Kraglin in Guardians of the Galaxy)
Walter Koenig (Star Trek)
Characters from Star Wars, Walking Dead, and the original Power Rangers
…and many others. Including actors Alex elected to bypass because he didn’t know who they were (William Shattner, Richard Dreyfuss, and Linda Blair)??
We had a great time, and throughout the weekend a few celebrities rose above the rest. One such memory was meeting Ralph Macchio…again, as we had met him before at the Cincinnati Comic Expo over a year ago. The charismatic Karate Kid connected a fist-bump greeting and then listened as Alex mentioned they had met before.
Ralph rubbed his chin in thought and then enthusiastically snapped his fingers with a genuine smile and rich New York accent. “You know what? I DO remember you! No, I’m serious. How could I forget you? How could anyone forget you? How have you been, my man?” Ralph then squatted to Alex’s level and off they went into long-lost friendship chat while I stood idly by as the forgotten third party. As the two traded memories, movie scenes, and more fist bumps, their smiling eyes filled their faces and mine! Their “re”-connection made the trip worthwhile, and certainly allowed Alex a reprieve from his discomfort for a while.
The good feelings weren’t just shared with celebrities! We also ran into a challenged young man sitting in a wheelchair who couldn’t stop talking about how he met his favorite actor. While the young man held a signed DVD to his chest, his mother explained how her son watches Happy Days every day and couldn’t wait for this day to come to meet Henry Winkler. I distinctly remember the chill I felt when the young man shared…“I met The Fonz! I met The Fonz!” and waved his signed DVD case for us to see. His smile stretched wide across his face and his eyes gleamed with happiness for meeting his idol. You couldn’t help but feel good for the young man and his family, thanks to the kindness of others like The Fonz.
It’s scenes like these that make you appreciate humanity. The connections go beyond an autograph, a handshake, or a conversation. They persist despite the stormy weather and an inconvenient red light. It’s taking the time to recognize each other as fellow humans, no matter how famous or well-known, no matter how able or not, and no matter how wet or dry. Personal connections validate our humanity, goodness, and hope for our future. They strengthen and sustain us for the days we need them most, which can be often and trying. And the beautiful thing is, they can be initiated and shared with the simplest of actions.
I say this because one of the most memorable celebrity meetings at the Louisville Supercon was also the most unexpected. Late in our first day at the convention, a large, muscular, man stepped forward from behind a celebrity table as we approached. He came forward to greet Alex, but his face held expressionless as he walked slowly, steadily, and methodically towards us. Deep down, I wanted to run, but the man’s unnerving, piercing stare held me fixed in place as if my feet were set in concrete. I glanced to Alex to gauge his reaction, but his smile told me the feeling was all mine. I drew a sharp breath and stood firm.
Soon, my fears evaporated the more we talked with the man. Within minutes of chatting with Alex, this menacing monster of a man melted into a new friend. His apparent thirst to inflict harm had turned to smiles. His terrifying exterior had softened and turned to laughter. Before long, the man paused and then shook his head in awe. A smile spread wide across his face as he stared at Alex.
“Man, there’s just something about you,” he said sincerely. “You’ve got that sparkle!”
Yes! He sees it! I sighed in silent relief. From the joy in his eyes, I could see we had nothing to fear.
It warmed my heart this monster of a man recognized the joy Alex brings to the world. It’s a gift many young men with Duchenne possess and share. Perhaps it's their ability to see the world through an unfiltered lens. Perhaps it's their ability to cut through the world’s noise and see humanity the way it should be seen…caring, compassionate, and supportive. Real.
I say this because we are ALL human…in this life…in this time. It doesn’t matter what possessions we own or job we have or office we hold. It doesn’t matter where we come from, the color of our skin, or what language we speak. We are ALL human and our lives affect one another more than we’ll ever know. And, sometimes, all that is needed to make the world a better place is the shared sparkle in our eyes.
We thanked the large man standing tall and still, and then turned to roll away towards another celebrity. Despite the man’s kind words and the time he took speaking with us, there was just something about HIM that I couldn’t shake. I nervously looked back over my shoulder to make sure he wasn’t following…slowly, steadily, and methodically.
You see, it’s not often one receives such kindness from the actor better known as
Jason Voorhees….from Friday the 13th.
Thank you, Louisville! These dudes had a fun time!