"Life is short; death is long."
—Edwin Lilley, Sr.
Somewhere between theory and practical wisdom lies the battlefield of truth where science and medicine attempt to understand and explain the mysteries of microbiology. At times, however, science and medicine appear at odds with each other, and this situation created a critical and personal dilemma for environmental health specialist Edwin Lilley of Seattle. When he experienced the onset of a rapidly degenerative illness, he sought to investigate its origin. He applied what he knew—science—and what he learned surprised him. The origin of his illness was not an obvious toxin, such as those he frequently encountered in his work among the solvents, acids, and heavy metal wastes of some methamphetamine lab crime scene. No—quite to the contrary—the search for his truth led him to a place he least expected.
“Who would think that one little tick hanging out in a campground in Provincetown, Massachusetts, would send me...on the path to the road to ruin? The evils that people normally look out for [here] are crystal meth, bad disco music, hangovers, and contracting AIDS—not Lyme disease—but that’s what happened to me in 1996,” he said.
Everything in his life has changed since then. What was once a life with seemingly endless possibilities has become one of ending possibilities—a sedentary shadow of the passionate, almost reckless life he once led. Though he has been dealing with the disabilities caused by his illness, memories of his former life before Lyme disease still give rise to understandable anger and mourning.
A Reckless Love
Born during the social revolution of the mid-1960s, Ed was raised and influenced by two talented and outrageously eccentric parents. His mother, an artist, and his father, a scientist, allowed Ed a great deal of latitude growing up in their home on Long Island’s North Shore. Not surprisingly, then, that he immersed himself in every whim and dream that inspired him. “I raced sailboats in the summer and went to prep school up north in Vermont in the winter. [My parents] nurtured my love of danger, but that did not preclude social responsibility." They reminded him, “The wages of sin will get you nowhere.” No argument with God on that score, but in terms of immediate gratification and pleasure, Ed also believed that “sin could also be a whole lot of fun.”
Thrill seeking, adventuresome, and a carefree globetrotter, Ed admitted he thought youth should to be spent living life to its fullest. After all, “Life is short; death is long,” his father used to remind him. Little did he know, though, that this kind of explorative lifestyle might come at a long-term cost to him personally. “I had a reckless love of the outdoors, which made me a prime candidate for Lyme,” Ed explained in hindsight.
He was athletic, healthy, and craved the thrills and dangers that the outdoors offered. “I sailed boats on Oyster Bay in hurricanes, climbed Mt. Washington in New Hampshire’s White Mountains during a winter whiteout in 100-plus mile-an-hour winds. [I] bicycled through France during the summer at the age of 15; camped in farmers’ fields and in Paris’ notorious Bois de Boulogne, which [by day] was a gorgeous park, [but, at night] became an open air market for transvestite prostitutes.”
Back in the States, Ed “bike toured through New England and rode the 350 mile trip from New York to boarding school in Vermont every fall, camping in the woods at night.”
Working as a bike messenger in Manhattan provided daily thrills and chills as he maneuvered his Peugeot racing bike through the crazy maze of cars and pedestrians on his way to various delivery destinations.
Hiking also offered all kinds of excitement for Ed. He trekked the Metacomet-Monadnock Trail through Massachusetts and New Hampshire, and he also hiked through the gorgeous Grand Canyon. Most of his travel to and from these areas was done by hitchhiking. This, too, was a thrilling sport to him. Meeting, talking, and traveling with strangers was part of the entire experience. “I hitchhiked all over the Northeast, living out of my backpack and tent,” he said. All of these adventures, not to mention his love of downhill ski racing, were the order and substance of Ed’s life—that is—before he turned 18 years old.
Education
In every sense of the word, Ed’s world was his classroom; however, in terms of secondary educational institutions, he attended what he called “the socially progressive” Vershire School in Vermont. This boarding school suited Ed well because, as he admitted, “it had very few rules.” It did, however, have a college level curriculum and a great environmental science program, which really appealed to him.
Though Ed never had to worry about financing his education, he did have some personal expenses that he had to assume on his own. “I worked to pay my expenses, raising pigs, tapping maple trees for sap, and doing other exciting things like fixing leaky sewage pipes on cold winter nights.” For fun, he spent his school breaks following the rock band performances of “The Grateful Dead.” In the summer, he lived in Manhattan’s East Village and explored the “vibrant art scene in those days.” He witnessed artists Jean Michel Basquiat and Keith Haring start their careers there. That was all sedate entertainment to Ed; whereas, attending punk rock shows “with friends and sneaking into The Mudd Club and The Pyramid Club with our fake I.D.’s,” was a bit more stimulating for him.
That’s how Ed spent his boarding school years. Time passed quickly; he graduated, and before he knew it, his college years had arrived. He ultimately enrolled in three different colleges: Marlboro College in Vermont, The Evergreen State College in Washington, and Franklin Pierce College in New Hampshire.
While attending college in New Hampshire, he lived in a wood-heated cabin in the wilderness. It had barely any amenities to speak of—no running water—just an outhouse. The more primitive, the more Ed enjoyed it. He embraced the rustic life, the isolation, and being able to surround himself with all that was natural. During the winters when the New Hampshire snows blanketed the ground, he brought out his cross country skis and traveled to and from classes this way. Reminiscing, he said, “It was a great life!”
While attending college, Ed also became involved in political activism—it was an education outside the forum of a classroom. “I protested the gentrification of developers kicking out the poor in New York; [I] sat on railroad tracks that carried radioactive materials destined for use in nuclear weapons; [I] learned about the power of civil disobedience.” He also zealously participated in the 1988 Democratic presidential campaign and its perks. In character, he said, “Michael Dukakis always had the best booze and food, but Jessie Jackson always had cold beer in the bathtub and a more fun crowd.”
In the formal classrooms of college, Ed enrolled in many liberal arts courses, which he enjoyed thoroughly, but his career focus was in the environmental sciences. “I studied the policy side and natural science side of the environmental sciences [but] I found that environmental science departments did a poor job of training future environmentalists about social policy and natural science issues.” For this reason, Ed designed his own college major—Human Ecology—and in 1989, he graduated cum laude from Franklin Pierce College.
The Bureaucratic Treadmill
After graduation, Ed found work with The Nature Conservancy, conducting flowering plant surveys. Later, he was appointed to the conservation commission in the New Hampshire town where he lived, and he handled public health issues and environmental policy problems that emerged as a result of converting rural areas into housing developments. Eventually, Ed changed jobs and began work as a public health sanitarian for the city of Nashua, New Hampshire. In this public office, he conducted rat population surveys, monitored public drinking water supplies, and worked in the microbiology lab. It was, in all respects, the fulfillment of his career objectives.
Despite this, he was growing increasingly restless. At the close of each work day, he eagerly looked forward to the peaceful seclusion of his rustic cabin home in the woods. Even there, however, he found himself contemplating the next day’s work tasks. He began to feel shackled to the bureaucratic system that employed him, and he began to resent it.
Having been born into some wealth, Ed felt he had a choice whether or not to work at this time in his life. In all honesty, he did not want to spend his young adulthood in servitude to public health. It was a turning point in his life and a wake-up call of sorts. He thought, “Youth is wasted on the young,” and he didn’t want to waste anymore time on this bureaucratic treadmill—at least not right now. He had places to go and people to see, and time was ticking away.
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