“I never thought I’d say this,” my uncle John whispered to his friend, “but for the first time in my life I’m glad I’m handicapped.”
As funny as the conclusion to John’s story was, I had a hard time laughing. I knew too many sad details of his life to just turn it off and laugh at some insensitive joke John made about himself. Even though John was laughing harder than the three of us, and his lifelong friend Jim Rhodus had tears in his eyes from laughter, I couldn’t just turn it all off, because I knew how much he suffered in life.
With his guidance, I learned not to feel sorry for him, because he said that often did him more harm than good, but when he told me that the first signs of his muscular degenerative disease appeared in high school I couldn’t help but feel bad for him.
“It affected you in high school?” I asked.
“Kind of,” he said. “I fell a lot. When I would run, I fell. We just thought I was a big old klutz.”
“That was what we called him, a klutz,” his older brother told me later. “He’d fall for no reason at all. He was the star guard on an undefeated, champion high school football team, and some of the times he’d just fall, in the open field, when no one else was around. It was so embarrassing that we learned to just laugh about it. We developed jokes, like kids do, to avoid wondering if there might be a greater explanation of it. You don’t search for an explanation when you’re a kid. You just laugh and joke about it. We had no idea that his eyes bounced when he ran, and we had no idea that his clumsiness was an early warning sign of a muscular degenerative disease. You have no idea about stuff like that when you’re young. We didn’t even think about greater things. We just thought he was a klutz.”
Over the course of the next forty years, this disease would gradually rob John of his muscles. He lost some of the functionality of his legs before he was thirty, and before he was forty, he lost the use of his arms and hands. Doctors guessed that if John hadn’t spent so much time in the gym, in high school and college, the degeneration could’ve been more rapid. The gradual degeneration was such that before he was sixty, he began to lose his throat muscles. It was difficult for him to speak, and even more difficult for us to hear him. When he inhaled and drew the full force of his lungs, he could muster something equivalent to a loud whisper.
He told me that one of the most difficult aspects of his handicap were kids. “Kids don’t understand. They’re scared, and when a kid sees me in the mall, or church, or somewhere they turn to their parents for an explanation. ‘What is wrong with him mommy?’ I’ve heard more than one kid whisper that to their mom. The parents don’t answer, not in front of me. They give me an apologetic look, and I want to scream ‘just tell them I’m handicapped’. I feel like such a freak when that happens, and it’s so frustrating that I wonder if it’s all worth it,” John said.
It wasn’t the first time I heard him wish for death in a round about way. I was so accustomed to it that I took the subject and transferred it to my otherwise healthy and able-bodied dad wishing for death. He said he preferred to be with my mom and all of our relatives.
“So, I told him that even if there is a heaven, my bet is we will all look down and think about how much life we wasted on Earth. We do not know if there’s an afterlife, but we know life has a beginning and an end, and that life is short.”
“It’s true,” John said, “It’s all true, but some of the times it seems to take forever.”
He did not say that in a profound manner, as if to wrap up his views on his life as a handicapped person. He said it as he might the details of a St. Louis Cardinals game. He shut the game of solitaire game he was playing on the computer down after he said that, and we spoke of the plans we had for the evening. He didn’t intend that to be a room silencing, thought-provoking line, in other words, it was just something he said before saying something else.
It didn’t strike me how illustrative such a line was to a handicapped man, until he relayed the “I never thought I’d say this, but I’m glad I’m handicapped” joke to me. The sad, illustrative line about life taking forever was the primary reason I was the only one not laughing at my uncle’s self-effacing joke.
The joke was the conclusion of a long story about John’s trip to Florida to see Simon & Garfunkel. He asked me to accompany him on this trip, but I just couldn’t see traveling halfway across the country to see two men sing. For John, it was a matter of life and death. He spent a lifetime listening to those two old men sing, and he feared he might die before he could ever see them again, or they would, or they would simply stop touring as a duo.
“If you can’t find anyone else to take you, I’ll go, but I want you to drain the swamp of possibilities before asking me again. That’s how badly I don’t want to go.”
Most people John’s age loved either The Beatles or The Rolling Stones. Some loved Elvis Presley with equal levels of passion, and I met more than a few who pledged allegiance to Johnny Cash, but for my uncle it was all about Simon & Garfunkel. He owned every single album they made together, and he owned most of their solo albums. He also traveled the country to see them sing in concert any time he could. He preferred to stay close to home, of course, but he always had that fatalistic belief that this particular tour might be his last opportunity to see them live, even though he already saw them perform live over a dozen times before. When he sorted through their list of tour dates of that year, he found that the closest they would appear on this particular tour was Florida, an eight-hour flight.
Why anyone would love the quiet, calm stylings of Simon & Garfunkel this much was beyond me. I have nothing against Simon & Garfunkel. They wrote meaningful songs that my high school administrators used to inspire us during high school spirituals, and I’ve also heard them at a number of weddings and funerals. That’s where I heard Simon & Garfunkel most often growing up, so my associations with them probably hindered my ability to appreciate their craftsmanship. I honestly didn’t care about them one way or another, but my uncle adored their music.
As we age, we learn that there’s no use trying to explain why one person loves a certain type of music over another. The one thing I did need explained was why he needed to see these particular men sing calm, contemplative songs live. What’s the point of watching calm and quiet artists take the stage to play quiet, calm music? What kind of show could they put on? They probably walk onto the stage with little fanfare, carrying a guitar and a bottle of water. What’s the difference between seeing them live and listening to them on the stereo, or watching their live show on TV?
My frame of reference for concerts was tainted in the 80’s when I saw the wildly explosive heavy metal, arena acts. I’ve never been to a calm, quiet concert, but I suspect that someone like Paul Simon doesn’t body surf over the audience while singing Bridge Over Troubled Water, and I suspect that their choreographers don’t employ KISS-style pyrotechnics during Here’s to You Mrs. Robinson. My guess is the two of them walk out from behind a curtain and sit in comfortable chairs to sing and play guitar for an hour or so. If they stand, is it more engaging? If they sit, is it more comforting? Do they engage in colorful banter between songs? They probably do, to give us our money’s worth. Garfunkel probably drops a humorous anecdote about Simon that everyone in the audience knows about, and Simon probably hits back with some comment about Garfunkel’s afro, and everyone laughs as they lead into The Boxer. If my Uncle John successfully convinced me to take him to this show, I’d probably miss the rapport, because I’d be asleep.
My guess is a Simon & Garfunkel tour is as low-cost as it gets. How many employees do they have to pay? Does their show require roadies? My guess is they could use a Volkswagen to transport their equipment from city to city.
John didn’t care about any of that. In fact, he enjoyed spending hundreds of dollars for the flight, the hotel nights, the ticket price, and everything in between, and traveling for about sixteen hours to and fro to watch a couple of gown men sing calm, quiet songs to him. Even though he said he didn’t consider it a hassle, the idea of what he went through to see a Simon & Garfunkel show was at the forefront of his mind when a feller in the audience, near him, started to sing along with Simon & Garfunkel.
“That’s kind of the price you pay when you go to a live concert,” I told my uncle.
“This guy was singing every song, word for word, and he was singing them at the top of his lungs,” my uncle replied. “Those of us who were near him could barely hear Simon & Garfunkel over him.”
“It’s true. The guy was all but screaming the lyrics,” John’s lifelong friend, and the one who eventually accompanied John to Florida, Jim Rhodus, said. “We could all understand the guy getting swept up in the excitement of the first song, but it started to get a little obnoxious after a while.”
“Yeah, when he continued doing this, what was it, four or five songs in? It was pretty obvious that this guy planned to continue doing this for every song in the concert,” my uncle continued. “I just spent eight hours, TSA, flight delays, and flight time to see these two sing, and this guy was ruining everything for me and everyone around him. So, I yelled out, “Would you just shut up!” I was so frustrated that I think I dropped an ill-advised word in there somewhere.”
“And he heard you?” I asked without mentioning how surprising it was that anyone could hear my uncle, due to his condition, and the idea that he was so loud that anyone could hear him over the music was shocking, no matter how quiet and calm the music is.
“Oh, he heard him,” Jim Rhodus said, already starting in on his laughter, as John passed the three-quarter mark of the story.
“I guess I was so frustrated that I mustered more strength than I ever have,” John said, “but yeah, everyone between me and him heard me. This guy bolted out of his seat and scanned the crowd in my general direction. When he stood, he kept going and going. The black guy was probably about six-foot-five and 250 pounds of lean muscle. It was like the scene from a comedy. So, this Ndamukong Suh-looking fella stands up and looks around for who said that, and he’s ticked off.
“Did he look at you?”
“The fans around me gave me up quick after they saw him, and the intentions on his face. They all turned around and looked at me,” John said, “and this guy spots me, and I swear I could see flared nostrils. He continues to look at me silently for about five seconds, and then he sits down without saying a word. After I calmed down, which took a little while, I turned to Jim and said … what did I say exactly?”
“You said,” Jim said. “He said, I never thought I’d say this, but for the first time in my life I’m glad I’m handicapped.”