The album was filled with glossy 4×6 photos. Photos of the red rose-bush tall against the wood fence; an upward shot of the aging basketball goal framed in Kansas blue sky, one single white cloud in the backdrop; a robin perched on the edge of the stone bird bath; a cardinal balancing among the branches of the juniper; a mug shot of Puggie, the gray muzzled pug dog. I never before realized the beauty of your backyard, the color, the life contained within its fences of wood, chain link, and evergreens. Later, I went home and sat on the back porch and gazed upon the everyday wonders of my own backyard. It was if I was seeing the green of the grass, the yellow of my mother’s daffodils, and the uneven gray of the patio for the first time.
My cousin Jeff was born with neurofibromatosis, an incurable disease which affects the development and growth of nerve cell tissue. The disease causes the growth of benign or malignant tumors, especially near the brain and spinal cord, as well as skin abnormalities and disfigurement. As a kid, I didn’t know the name of the disease, I just knew it limited Jeff, kept him from going with us to Joyland Amusement Park or to movies at Crest Theater. The disease attacked the right side of his face, rearing its ugliness when he was just a toddler, causing large, benign tumors to stretch and deform his appearance. Born in 1955, the medical field was still learning about the disease, working to understand its manifestations, and attempting to help patients live with the disease. His future was uncertain. We were told he might not live as long as the rest of us, his cousins. The disease was a mystery. The disease was selfish, keeping Jeff to itself. It was the first thing I remember ever hating.
As one of the cousins, Jeff was no different from the rest of us. We celebrated birthdays, read comics, and shot hoops for hours on the dirt court in his backyard or the makeshift goal at the farm. It was at the farm he experienced the most freedom. He helped bait hooks as we all fished, sitting along the old wood bridge, sneakered feet dangling a few feet above the creek. He swam with us in the large above ground pool, went on hikes with us through the pastures, spun us younger cousins on the tire swing, and played ping-pong in the damp basement of the old farm house. On the Fourth of July, we tossed firecrackers, lit smoke bombs, and waved sparklers. I’m certain he instigated the whole “let’s take the Black Cats and blow up cow pies.”
Like the majority of us, he even graduated from North High School, although he earned his degree while being tutored at home, having been pulled from the public schools when he was twelve. When my aunt and uncle sold the farm, Jeff’s outings became fewer and fewer, secluded to the house just a block from my own. Older than a handful of the cousins, Jeff became the family babysitter, but he was more like a teacher. He educated us on music, movies, and sports. He fed us Red Baron pizzas topped with his own special ingredients and the creamiest macaroni and cheese; served us cold Cokes in coffee mugs with tiny ceramic frogs hidden in the depths, and played board games with us seated around the kitchen island. He would tell us jokes, be stern with us when needed or threaten us with “tickle time” if we misbehaved. He taught us to appreciate the soundtracks to movies, corrected our song lyrics (no, it’s not elected boobs, it’s electric boots) and inherently provided the simplest of life’s lessons.
And as we grew up together, we transitioned from the babysitter and the babysat, to best friends and best cousins. We replaced Monopoly and Sorry with hours of Music Trivia and sipped our first German beers while sitting around that same kitchen island, eating Big Cheese pizza. We talked about books, cocooned in juniper trees on the front porch while listening to Casey Kasem’s Top 40 Countdown. The first time I heard Cheap Trick, I was sitting on the floor in front of his stereo, passing the album and liner notes back and forth, Jeff schooling me on the talents of Rick Nielsen and Tom Petersson. My sister may have sparked my love of music, but Jeff provided the kindling to ensure the flame burnt bright and long. He was one of the first in the family to own a stereo that allowed you to record albums to cassettes and he spent hours creating the perfect mix tapes, introducing me to Elton John and Led Zeppelin.
I often thought, and still do, that Jeff would’ve been an incredible radio disc jockey because he listened to every nuance of an album, read Rolling Stone magazine front to back, and was passionate about passing along his newfound knowledge, summarizing articles, and introducing the cousins to new music. It would have been a perfect job for him. And when MTV launched onto the music scene, my younger brother and I watched many a World Premiere with him, including Pat Benatar, Sting, and Van Halen. He would rate the videos, as we watched them over and over, Jeff always recording them to make sure we didn’t miss a thing. He loved those early days of MTV, especially the concerts. And in 1985, when the Young Ones crossed the pond, we watched many an episode at the Graber’s abode hysterical over the antics of Vivian, Rick and Mike. Jeff’s impression of Neal, his favorite, was spot on.
But, as the cousins grew older and became more involved in sports or school activities, and friends, our time spent with Jeff decreased. We grew socially, fell in love, went to college, moved away, married, and had children. Jeff stayed his course. He began babysitting the next generation. Later, he became the Commissioner for our family fantasy football league, keeping track of stats by hand, waiting for our phone calls to verify our standings, reprimanding us if we called too early before he’d had a chance to update scores following Monday Night Football. He would answer the phone, ‘The Commish, here.” Even after our family league disbanded, he remained the Commish, to me. But, the disease remained relentless, tightening its grip, and soon visits to his home became limited by his immediate family. Now living across town from one another, we kept in touch by phone, instant messenger, and later, Facebook. His birthday became the only day I would see him and the visits were brief, but he was never far from my mind. A song, a movie, a pug dog meme, and every Shocker game I thought of Jeff.
Neurofibromatosis is the disease, but it is not Jeff. It is easy to look upon his life from the outside and feel sadness and pity for a life so contained, but for us who knew and loved Jeff, his life was inspiring and profound, especially for us, his cousins. I know I speak for all of my cousins when I say that knowing and loving Jeff transformed our lives and embedded within our souls the gifts of compassion, empathy, and unconditional love. As children, we did not see the tumors, only Jeff, and at times, it was easy to forget about the disease until that moment when we would think or say aloud, “we should all go to the drive in,” or “let’s go to the game, this weekend.” It was then we hated the disease, as it stood between us and Jeff, separating us, pushing us away. Jeff was intrinsic to our development, educating us in so many ways, but for me especially, he taught me to realize and appreciate what I had in my own backyard. Jeff helped to recognize the beauty of that within our own fences, to look inside our windows and not just outside or beyond. So often, we look over the fence and long for what is not ours, while what is most important is sitting next to us on the porch swing, laughing with us at the kitchen table, and holding our hand.
The Kansas wind blew loud and strong the day we took turns sprinkling soft Kansas dirt over the small box in the ground which held the earthly remains of Jeff. It seemed at times we might topple over and roll comically down the hill of Calvary Cemetery, one last prank by our cousin whose bag of tricks included “tickle time” and “the Cucuy.” I could almost hear his boisterous laughter over the wind and afternoon traffic on Kellogg. Jeff would’ve celebrated his 60th birthday on December 18, defying the age expectancy given to him by his doctors so long ago. As we drove away from the cemetery, I thought of Jeff and his life, his world filled with movies, National Geographic magazines, the roar of the crowd through the speakers of his radio, and music, lots of music, and the love of cousins. It was then I understood the strength and forcefulness of the wind that sad day. Jeff is free. Free to see the sunset over places he learned about between the pages of those magazines. Free to gaze upon the ocean waves. See his beloved Yankees. Hear the roar of Shocker Nation in Koch Arena.
Forever a part of our lives, our souls, the intrinsic make up of our being, but free. Finally, free.
Thank you, Commish.
“If I could reach from pole to pole Or grasp the ocean with a span, I would be measured by the soul; The mind’s the standard of the man.”
– (adaptation) Isaac Watts- False Greatness
