Memoir

How Ghost Hunting is Like Living with Lyme Disease

After years of searching for a diagnosis and wondering if it was all in my head, tracking paranormal activity felt eerily familiar.

How Ghost Hunting is Like Living with Lyme Disease

“Is anybody here?” Silence. “We’d love to talk with you.” Silence. “We mean you no harm.” Silence. “Can you make a sound for us?” Diane’s voice creeps upward through the blackness with a tinge of desperation. In the daytime, she’s a nurse. Tonight, she’s a ghost hunter.

“How do you feel?” Her wind-chime words are meant for the many men who died in this bedroom almost 150 years ago, in pain.

Dion, deeper-pitched, speaks with authority. “If you want to talk to us, go to that light.” The pinprick-sized glow, red like fresh blood, comes from a plastic box on the 19th-century oak floor. It’s a combination motion sensor and electromagnetic field (EMF) detector.

We sit in a circle around the machine and wait for it to screech, which would indicate motion, possibly of the paranormal sort. Or perhaps a surge in the surrounding electromagnetic field will make the needle thwap across the screen like a smack in the face. This may represent a ghost (or, I remind myself, a microwave oven). Right now, the needle rests.

Loren, the instructor for Ghost Hunting 101, lies propped on his elbows. He appears impervious to cold, exhaustion, or the jagged shadows thrown onto the walls by the headlights of passing cars. An unlit cigar hangs from his shadowed silhouette, always. He chomps it between his teeth, as if slowly eating it. He points his remote infrared thermometer at the motion detector, to check for a sudden drop in the already chilly temperature. A pocket of coldness might be a long-dead soldier (or a leaky window). Ben Lomond plantation manor was an impromptu hospital in Manassas, Virginia, which was the site of two of the bloodiest battles in the Civil War. It thrived on slave labor. Even in peacetime, the place must have reeked of suffering. Now it just smells dusty.

The ambiguity and controversy of hauntings intrigue me. If I can sort out the spirit world, maybe I can also solve the mysteries of my daytime life. I want two things tonight: I want to experience a ghost, and I want my body to stay strong until morning.

I’ve spent two weeks saving up energy for tonight, and now the cold sucks away my adrenaline like a vacuum. Loren says frigid weather results in the best data, so I try not to sulk. My neck feels tight like rawhide. A burning spreads across my palms. A squeezing ache swells in my forearms and spine. Then it loosens and I breathe easier. This is not a ghost. It’s just nerve inflammation from my chronic Lyme disease. I live my life between surges of symptoms such as these. Stay focused, I tell myself. Your life consists mostly of naps. This is a chance for you to have an experience. To live. I’m a little jealous of the supposed ghosts. They float around unencumbered by treacherous bodies, while corporeal humans — like me with my sore arms and runny guts — shiver in the January wind and beg the dead to show themselves. I don’t always believe in ghosts, but I believe in data. I want to discover that the body is not everything, even though our physicality sometimes feels like the most powerful force in the world, especially when sickness corrupts your whole personality and spirit.

I want to be a good ghost hunter, but I’m not. I have the requisite curiosity and analytical mind-set, but not the stamina. Most investigations take place at night — all night. We walk around setting up equipment, making recordings, taking pictures. The hard-core paranormal researchers in the group drive for hours every other weekend to stay up all night in creepy, creaky buildings. They paw with numb fingers at camera buttons and EMF readers. Forty hours of recordings might yield one snapshot of a blurry face in a window, where no living person should have been. If you can handle it physically, the persistence pays off. Loren once told us that after an investigation at Gettysburg, he sat in his car and said the requisite post-investigation mantra, which we were assured in class would keep us safe: If anything unseen is here, do not follow me home. Then — he claims — the passenger door clicked open.

All investigators hope for that kind of blatant ghostly moment. I need one here at the plantation, to offset the drudgery of my daily cubicle-and-couch-bound existence.

“Did you fight in the War Between the States?” Dion asks. In the daytime, he’s an engineer. Tonight, he hopes to record a spectral voice answering one of his questions. We wear digital sound recorders in our headlamp bands. Perhaps later, as we scroll through several hours of MP3 files, we will hear static-like snatches of a sound that, if trimmed and amplified through audio software, may sound like yesss.

Diane’s digital camera click-whirs at the blackness above the motion detector. “Flash!” she says. This is so that when we listen to our audio recordings later, we’ll know that the click-whir is Diane’s camera, and not an electronic voice phenomenon, or EVP.

The silhouette of Diane’s head shakes back and forth. She’s captured nothing more than my face across the room, probably two pale orbs of white cheeks beneath shadowed eyes.

“Are you cold?” I ask. I’m speaking to the spirits presumably hovering in the wood-tinged air. Because I so often feel half dead myself, I imagine the ghosts’ existence is not unlike my own. Do they have trouble warming up, too? But if doctors can’t understand why I’m always cold, why do I think I can learn anything tonight about spectral metabolisms? I ask again anyway.

Paranormal investigators apply logic and analysis to phenomena that don’t lend themselves easily to logic and analysis. Tests and data are important, because otherwise how can you be sure of what you’re experiencing? Take EVPs. Each suspected recording of a ghost’s voice is ranked on a scale of A to C. In order to qualify as a top-notch “Class A” EVP, two or more people must listen to the recording and both hear the same words. A good paranormal researcher doesn’t say, “Hey Bob, do you hear the voice saying, ‘Get out’?” but rather, “Hey Bob, what do you hear between 3:30 and 3:32?”

One of the group’s old favorite EVPs is Heh heh, did you see that? Apparently Loren had tripped on some stairs, and his colleague’s video camera picked up that murmur. The recording is on the group’s website, labeled with that phrase. When I play the recording of it, I hear each word. Don’t I? These EVPs might be ghosts’ voices, or they might be listeners’ brains seeking patterns in random noise.

One a.m. Still time to see a ghost. Still time to feel afraid of something other than this thing inside me. For 15 years, my malady defied logic or diagnosis. The aches and exhaustion pulsed like waves against a seashore, crashing down hard but then receding again, day after day, year after year. I was physically ill, though I often wondered if I was crazy too. Eventually my doctors and I discovered the Lyme disease, but that knowledge didn’t make things any saner. No one knew how to fix the pain, exhaustion or even the less irritating quirks like how I was always thirsty. I carried multiple water bottles with me and peed every hour. In the bathroom at Ben Lomond, I muttered to myself, “Tired. Sick of being thirsty. Should I go home early?” then realized my recorder was still on. “It’s just me,” I said, over the splash of pee. That way, future listeners would not think the bathroom was haunted by a tired, thirsty Civil War soldier.

My body started to change in 1994, not long after a college internship researching white-footed mice. I took that internship because I wanted to commune with nature. Turned out, it wanted to commune with me too. For three months, I walked in the dank Virginia woods eight hours a day, seven days a week, trapping, weighing and sexing the little rodents. These mice carry the Lyme bacteria Borrelia burgdorferi in their blood. They host the larval deer ticks that pass Lyme disease and coinfections to humans. During the internship, I spent most of my time in the brush with the scruffs of squirming, snapping mice pinched between my fingers.

At the time, the threat of Lyme disease did not trouble me. People said it was easy to recognize (rash, swollen knees) and easy to cure (a month of antibiotics). But Lyme is not always like that. My first symptoms were a ringing right ear and shortness of breath. Due to a combination of physician ignorance, patient ignorance and sociopolitical-scientific red tape, I did not receive the proper blood tests until 15 years later.

During that decade and a half before the diagnosis, before any planned fun activity, I stockpiled energy — or adrenaline — by resting and cutting out nonessential exertion. Then, after the fun, I always tried to get home quickly, to ride the resulting wave of sickness in private, in the shadows of drawn blinds. During these “fits,” as I called them, I felt dopey, heavy-limbed, and squeezed with flu-like body aches. My tight face and neck grew tighter, so that I felt compelled to try to stretch and pop them, throwing my head backward and grimacing. When the pain pulses came on too strong or too close together for me to regroup by breathing, I groaned and made fists. To anyone who saw me, I looked less like a sick person than someone possessed.

I never knew exactly when the fits would come, although my upper spine usually tingled a little beforehand. I wasn’t alone in my confusion. Lyme is a disease of over-the-top imbroglio: Doctors, scientists and internet pundits can’t agree on anything about the sickness — not physiology, not pathology, not testing, not diagnosis, not treatments. Controversy flames a boiling soup of patents, profits, physicians, patients, economics and egos. Meanwhile, sick people struggle to make their best guesses regarding physiology and protocols, based on the available evidence, or more accurately, the lack thereof. Like ghosts, the Lyme bacteria, and the antibodies produced by the immune system against them, are notoriously hard to capture on tests.

I watch Dion’s dark form fiddle with the EMF reader. He’s longing for some proof too. I wonder what puzzles him, in the daytime. His hope infects me and I scan the darkness again, with my camera clicking, and announce, “Flash.” I touch the recorder in my headband, making sure it’s still powered on. I can’t ask the spirits, “What was it like back then?” That’s unsafe. Loren’s co-instructor, Jim, told us that once, at an old battlefield, he’d said, “I wonder what it felt like during the battle,” and a stabbing pain shot through his torso. Like a gunshot.

A stabbing pain shoots through my hip. I gasp. Heads turn toward me. They assume I’ve experienced something ghostly. But stabbing pains are a common neurological side effect of Lyme. I’m used to them — they feel like very slow eaters dining upon me: a fork in the thigh, a spoon in the bicep, a toothpick in the toe knuckle. “It’s nothing,” I say. “Sorry.”

In the days before my Lyme diagnosis, some doctors thought I had fibromyalgia, a generic term for muscle pain of undefined origin. It was about as useful a diagnosis as the one I got when, during one of my many insomnia attacks, I stumbled upon a New Age website. It said that the stabbing pains stemmed from my previous existence, when I died riddled with bullets on a battlefield. The site sold meditation plans that could free me from this past-life baggage, if I truly believed. After 15 years of sickness, I barely believed in anything. I was so jaded that I only tried new treatments out of habit, not because I really thought anything would ever make me better. It didn’t help that so many physicians and insurers in the medical-industrial complex said that Lyme bacteria couldn’t survive more than a few weeks of doxycycline. My bugs were dead, they said. Any pain I felt was just my imagination, or the normal pangs of an out-of-shape body. Although I didn’t like the judgmental tone of these chronic Lyme deniers, I did understand the appeal of wrapping oneself in a comfortable cloak of certainty. I’d often tried to pull one tight around myself, but chilly winds of doubt still blew in under the hem.

Here, now, at the ghost-hunting class, I’ve been on and off of various antibiotic protocols for two years. And I feel better. My health improvements have been slow, small and subtle — and therefore, easy to second-guess: I sleep longer. The tinnitus is quieter. I have a bit more energy. But I want a blazing recovery to prove that the antibiotics are working. I want to pop out of bed saying I’m gonna weed the garden! instead of Urgh, uch, sigh, pop, creak! while clawing free of the sheets like a ghost from its grave.

A wailing fills my ears. This is not a ghost, it’s tinnitus. My ears ring constantly, a common side effect of Lyme. Now I listen for a separate wail, a different tone, but I hear nothing beyond my own internal screeching. Perhaps, like me, the ghosts are tired. Loren says that ghosts have to exert a lot of energy in order to manifest. I get it.

The trick is to decide for yourself whether a sound is a breeze in the branches or a voice from beyond. In the early years of my sickness, I listened less to myself and more to my friends and doctors. I started to doubt myself. Maybe I wasn’t sick. Or maybe I was a somaticizer, unconsciously translating psychological worries into physical ailments. I almost preferred to believe that some kind of unresolved emotional issues were causing my physical dramas. If my spirit affected my body, that meant my spirit, my self, my soul, was trump. But if my body controlled my spirit — as certainly seemed to be the case, because when I ached and shivered I could easily become a very cranky, tearful person — then that meant my soul was just a soup of neurons and proteins that would curdle the moment my heart stopped.

After 4 a.m. we climb a small staircase in the main house that spits us out in front of the pantry. Diane stops in front of me and says, “Pie.”

I say, “Huh?” Then I smell it. Sweet. Bakery-ish. An odor that wasn’t there an hour ago.

“Cinnamon,” says Dion.

“They would have been baking for the holidays,” says Loren. When I write this down, my pencil tip almost tears the paper. This, this could really be a ghost. But first we must rule out normal explanations. Diane and I sniff the empty cider jugs in the nearby pantry. They smell of nothing, I write. I underline it twice, then poise my pen over the blank lines underneath. My heart beats faster. We sniff the Christmas tree lurking in the shadows. From its boughs hang rock-hard cookies, which from their beige color look as if they could contain cinnamon. The smell doesn’t come from there, though.

Residual haunting; odor from holiday cooking? I write, taking myself very seriously. By the time I’m done scribbling, the smell has vanished, as if it were just passing by. Dion and Diane and I look at each other, and I sense Loren off to the side, grinning behind his cigar. Our ghost. It’s subtle, but we can’t find a reason not to believe. I write this down too.

As I walk across the lawn to my car, the horizon lightens like a fading bruise. I wince when my bag bumps my calf muscle. The shivers that presage a fit trickle down my spine, so I begin to doubt the signs of my recovery yet again. Have I imagined the increased energy, the moments of feeling surprisingly comfortable? The cycle of doubt will continue. I’ll go home and toss in bed with hot pinpricking palms. Later I’ll feel better and forget how my bones ached or my elbows sizzled inside. I’ll listen to our recordings, ears poised to pull EVPs from the static. I might hear a spectral voice, but then I’ll wonder if I imagined that too.

By the time I reach my car, I already think maybe we all dreamed the cinnamon odor. Nay-sayers would insist that those 19th-century holiday pie-makers should be completely dead. Just the way my Lyme bugs should be. I turn on my headlights against the dark morning. As my tires scrape the gravel drive, I think hard: If anything unseen is here, do not follow me home.

But I know it will.