My Summer With Chucky
The summers I was 15 and 16, I volunteered at a place that was then called the Regional Training Center Camp (RTCC), adjacent to the grounds of the Powder Ridge ski area in Middlefield, Connecticut. (It’s now the John J. Nerden RTC Camp, named for the saint who was its first Executive Director.) The camp was for people of all ages, with all manner of cognitive disabilities. They would arrive by the busload every morning for a full day of activities.
The first summer I was there, I worked in Outdoor Rec. I got to spend every day in the summer sun, engaging the campers in all the games and outdoor activities in which they might be capable of participating. From softball to basketball, from football to kickball, from hiking to golf, we pretty much did it all. On the days the weather gods were less than pleased, we carried on in the shelter of a large pavilion.
The summer passed pleasantly enough. I enjoyed working with and encouraging the campers. I enjoyed working with and getting to know the other volunteers and the camp’s staff members. But I was less than satisfied with the routine. There’s just so much creativity and spontaneity you can inject into games comprising one ball and a million rules. I wondered if I’d return to the camp the following summer and, if so, what I’d choose to do.
The Irishman Returns
Knowing the part-time job I’d scored at McDonald’s when I turned 16 would afford me the time to return to the camp, I opted to do it. But I asked if I could be placed in something other than Outdoor Rec. I was. I was assigned to a section of the camp referred to as One on One. Every volunteer in that section was assigned to one camper for the entire summer, one camper whose disabilities required individual care every minute of every camping day. I was assigned a boy named Chucky.
Chucky’s cognitive challenges were compounded by the fact that he also suffered from cerebral palsy and epilepsy. He was kept sedated to control his seizures. He was confined to a wheelchair. He wore a hockey helmet to protect his head should he fall out of his chair during a seizure or otherwise. He drooled constantly. He had to be fed and watched as he ate, lest he choke. He appeared to be largely unresponsive and was reputed to be non-verbal. That was all I needed.
If you ever want to make sure something gets done, without fail, tell an Irishman he can’t do it; that is, tell him he’s not capable of doing it or he’s not permitted to do it. Conversely, if you ever want to make sure some particular thing never gets done, tell an Irishman he has to do it. Come Hell or high water, I was going to get to that boy if it killed me.
I talked to Chucky deliberately and incessantly from the day we met. I talked to him as if we were peers. I talked to him about whatever was on my mind. I asked him questions. I pretended he was answering me. I’d repeat his imaginary answers aloud, and I’d continue the conversation as if he were holding up his end. I made up and told him ridiculous stories. I did everything but refuse to believe that dull glimmer in his drug-hazed eyes was NOT awareness. Most important, on Day One, I determined to call him Arnold.
Behind the Veil
One day, in one of the last weeks of the summer, I was carrying on as usual. I laid one of my typical absurdities on him and said, “Right, Arnold?” His face suddenly lit up like the sun. That boy’s eyes blazed right through the chemicals that were supposed to keep them dull and unreflective. He broke out in the biggest, goofiest, most life-affirming, heart-filling, and spirit-lifting smile I’ve ever seen. And he said with unabashed delight, loudly enough so everyone in the building could hear him: “No! Chucky!”
I can’t dance a step. God must have thought it would be hilarious to give me two left feet, a near-fatal lack of coordination, and a paralyzing self-consciousness of both. But with everybody in the building headed our way at a gallop, I picked Chucky up out of that chair, held him in my arms, and danced around the building with him, laughing and crying like I’m laughing and crying right now. I still have no idea which one of the two of us was happier. It never mattered.
At the end of that summer, I was awarded a certificate from The Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD), signed by Mrs. Shriver, for my work with Chucky. And all I did was help that boy find a way to smile and talk.
So, the next time you’re tempted to think you’re just one person, that you can’t make a difference, that you’re invisible, anonymous, powerless, unable, incapable, or anything else equally self-belittling, please remember this story. I do. I always will.
It teaches me the immeasurable power in one boy’s smile.
