This past week Camp Jabberwocky announced it was canceling its summer season due to the coronavirus pandemic. The camp will be closed to protect the campers and the staff. The news was not surprising. It was of course the right thing to do. But it hit me hard. For many summers my Uncle Bill attended the camp, arguably his favorite few weeks of the year.
The camp opened in 1953 and since then has been a haven for people with all manner of disabilities. It began as the Martha’s Vineyard Cerebral Palsy Camp and was later renamed Camp Jabberwocky.
Uncle Bill was born with cerebral palsy, confined to a wheelchair and unable to speak. He was a fixture of my childhood, from family dinners and holidays, to summer vacations in Kingston where my paternal grandparents lived for part of the year. My grandparents took Uncle Bill everywhere, to restaurants, shopping, the beach, wheeling him mat-side for my wrestling matches and other school events, any place he or they wanted to go.
He loved the ocean and eating and cocktail hour, and was, in a way, ageless, even when he grew a mustache. His crew cut never turned gray, his face never carried wrinkles. He was also the biggest Red Sox fan ever and I can still hear him shouting out with glee when the team won or in anger when they lost.
But to say I reveled in Uncle Bill’s joys would be a lie. For most of my childhood I was not happy to see him, and when he arrived at my school events, flailing in his wheelchair, I felt embarrassed. I did not talk about him to friends, nor, in any real sense, did I talk to him, either.
I was eight years old, 10 years old, 12 years old and I did not understand.
At best he was annoying, I thought. When we visited my grandparents Uncle Bill ruled the remote, able to change the channel at will by banging down on the clicker, anchored at a table next to his wheelchair. My brother and I might be watching Saturday morning cartoons, engrossed in the world of Sigmund and the Sea Monsters or H.R. Pufnstuf, when Uncle Bill would give a loud hoot and change the station. It never occurred to me that maybe he wasn’t looking for a different program, but that he was trying to get our attention.
But his smile was always huge and even as I turned away I was not immune to its effect. I was wrapped up in my own life, my mind swirling with the ups and downs of adolescence and coming of age and I often wore a scowl on my face. And yet here was my uncle, smiling so wide every time he saw me that I can still see and feel it to this day
In my 20s the movie My Left Foot came out, about the Irish artist Christy Brown, born with cerebral palsy, confined to a wheelchair and at first unable to speak. The movie starred Daniel Day-Lewis and chronicled the artist’s journey, from the frustrations of being trapped physically but mentally sound, to his life as a writer and painter, all done with his left foot. It was a revelation to me, that Uncle Bill’s condition did not affect his mind too. What I saw was not who he was, not by a long shot.
And yet I still did not understand.
When my grandmother died and it became apparent my grandfather could not take care of Uncle Bill alone, he was moved to a facility that took superb care of him. I knew this through talks with my mother at the time, who with my father visited Bill each week. My mother — like my father — had always been kind to her brother in law, taking the time to talk with him and treating him not as someone in a wheelchair separated from the rest of us, but part of the fabric of our lives.
I kept meaning to visit him, too, but somehow I never found the time. I was living in New York city then, chasing my own life’s journey down so many blind alleys and wrong turns. It was easy to put off anything I thought did not directly affect me.
Eventually, Uncle Bill got sick. It was serious my mother told me, and so one morning I woke early and made the trip from the city to northern New Jersey to visit him. I did not know what to expect. It had been years since I had last seen him and I wondered if he would even recognize me.
I registered at the front desk and was led down a corridor to his room. Uncle Bill was lying in bed, an unusual sight I felt because I never saw him lying down. His world was his wheelchair, but I did not see it anywhere in the room.
Uncle Bill turned his head to me and his face erupted in a huge smile, bigger and more startling than I remembered. I walked toward him, sat down and held his hand while he continued to smile and greet me with excitement.
I sat with him for hours that day, holding his hand and telling him stories. I also told him how happy I was that he was my uncle and part of my life.
It was hard to leave that day and when I did I promised to visit again soon. Uncle Bill died a few days later, before I could return.
I think of that moment with him often, more often than many other pivotal moments in my life. And I see it again each summer, when the Camp Jabberwocky campers arrive on the Vineyard. The Gazette always sends a photographer and reporter to chronicle the arrival where the counselors dress up in all manner of outrageous costumes and greet the campers like rock stars. Back in the office I linger over the photographs, mesmerized by the scene.
For years I have also attended the summer plays the camp puts on, startling productions filled with song and dance, talent and humor, but most of all heart. I will miss many things this summer, but these plays most of all. But next summer I will be back in the audience cheering and crying — for the campers, the counselors who work for free, for my Uncle Bill, for my ignorance and my journey to understanding, but most of all for Camp Jabberwocky, a place of joy and compassion for over 65 years.
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