I began to track when the hallucinations occurred: always when I had just awakened from sleep. The hour did not seem to matter, whether it was midnight or seven in the morning. It did not seem to correspond to the degree of light in the room, or to my blood sugar levels, whether I was home or away, whether I had had wine at dinner or none for weeks. Some switch in my brain that controlled dreams now seemed to fail to turn off once I opened my eyes, and before me would spring forth the embodiment of my nightmares, the incarnation of my imagination. Had I been a science fiction writer, I would have been blessed with abundant material.
My bedtimes became even wilder, and not in the ways most people would find sexy and desirable. Along with having hallucinations, I began to act out my dreams. I ran in bed, I sat up, I talked. Since I often had dreams of being attacked, I would kick and thrash, push and pummel, and Lou would bear the brunt of those kung fu moves. Other victims of my assaults were a lamp, the sharp corner of my nightstand, and my pillow. I awoke with bruised fists. One night, while dreaming that a woman was about to stab me, I tackled her in my dream and in doing so dived out of my real bed and landed with full bodily force on my crown.
Then there were the bizarre acts I committed of which I have no memory. I purportedly threw laundry around our loft in New York, draping clothes over chairs, sofas, and tables in odd configurations, so that when I saw my rearranged rooms the next morning I thought a deranged interior decorator had broken in. The notion of ghosts also came to mind. Another time I apparently crammed several boxes’ worth of tea bags into a small bowl. I thought Lou had assembled this odd presentation of herbal choices for future guests. And one night, while in a hotel in Pasadena, I reportedly called a friend at midnight and left a message in a woeful little-girl’s breathy voice, asking whether my friend had seen Lou and my dog Bubba. The next day, after I refused to believe I had called her at such an ungodly hour, she played back the message for me. Listening to my recorded voice, I had the eerie feeling I had developed multiple personalities. Had I been a drinker, I would have sworn off alcohol.
I was worried that I was developing dementia, that I might be following in my mother’s footsteps and have Alzheimer’s disease; I gave Lou permission to place me in an assisted-care facility, should the time come. We revised our wills and set up a trust. I consulted a few more doctors. I saw a sleep-disorder specialist who found only that I did not have apnea. I saw a neurologist, who said I did not have signs of seizures. I was starting to wonder whether perhaps nothing was wrong with me but the general malaise of growing older and stranger. Did other people simply accept that their bodies broke down like automobiles the moment their warranties expired?
The psychiatrist believed that there was indeed something more. It relieved me greatly that she did not think I was crazy. She pressed me to have more tests done. The most troublesome problem now was my inability to work because of exhaustion and poor concentration. If anything, going to and from the hospital made it even less possible to write. I decided to stop seeing all doctors for a while and try to follow the British example: with a stiff upper lip, carry on.
As my problems worsened, I made light of them with my friends. “Good thing I’m a fiction writer and not your airline pilot,” I would say. To them, I looked normal; they assured me I was suffering only from the forgetfulness common to all baby boomers. We all walk into rooms and wonder why we are there, they said. We can’t remember names, and even our own phone numbers. We all have stiff muscles and aching joints. We all suffer from bad dreams, especially since September 11. We are all losing our hair.
Rather than feel comforted, I felt alienated, for that was not how it was for me at all, yet it would have sounded crazy to explain why not. Did most baby boomers lose their hair in clumps, so that their shower drains had to be unclogged almost daily as the equivalent of a small wig was extracted? Did my friends read e-mails, respond at length, then have no memory of doing either? Were they stunned to read unfamiliar pages of stories they had evidently composed? Did they leave the first letters off words when writing by hand? Did their speech become garbled, such that they substituted like-sounding but nonsensical words? And did they become lost in their own neighborhoods, unable to recognize familiar landmarks, too mortified to ask for help? When flustered by a distraction, were they overwhelmed, then disoriented? I would stand on the sidewalk, paralyzed with indecision, fully aware that I looked like a potential victim for a mugger as I glanced up and down the street, baffled. My salvation was to nudge my dogs to walk ahead of me on their leashes to keep me going in any direction until I could find my bearings. If we were close to home, they went in that direction. In New York once, without the dogs, I wandered aimlessly for an hour in a snowstorm, just two blocks from home, because that blanketing of white rendered the terrain unfamiliar.
Driving a car was no longer something I could do with natural ease. It became a mental chore, a test of my reflexes. I marveled that most people knew automatically not to brake at green lights but to do so at stop signs. Colors and foot movements became tricky, as did directions. People honked in exasperation at my mistakes. I stopped driving. I no longer left the house alone. Bit by bit, I learned to make accommodations to deal with my problems. But consequently, my life was becoming very small.
I have Madonna to thank for my diagnosis. In November 2002, Lou and I were headed to Miami for a reunion with my fellow bandmates in The Rock Bottom Remainders. The boys in the band thought it would be hilarious if I sang “Material Girl,” badly—not that there was any other way I was capable of doing it. I had my doubts about singing this particular song, but I went ahead and purchased a new wig for the act, as well as a nylon bag with the Enron logo, both of which I found on eBay. My Material Girl would be a corporate-scumbag lady. On the plane from San Francisco to Miami, I studied the lyrics and listened to a karaoke version of the song on my CD player.
For the next six hours, I tried to commit the lyrics to memory. They were not profound—this was about a girl who liked to fool around but who was no fool when it came to money. Yet trying to hang on to the words was for me like trying to wrangle oiled fish. After six hours of study and karaoke-style practice, I still could not recall the first line without having the printed words in front of me. I reasoned that I was tired. Once in a hotel in Miami, I continued to practice, from nine p.m. until two a.m., at which point I tried a test neurologists use with Alzheimer’s patients—counting backward from one hundred, subtracting seven each time. It was terrifying. I felt as if I were swinging on monkey bars, having to remember simultaneously which hand to release and which bar to grab, only I would hesitate too long in figuring this out and would fall between bars. I was sweating with frustration and fear. I noticed also that my left arm, which had been numb down to my forefinger, now developed an icy-burning sensation. I’d had a similar problem with my right arm two years before. In the morning, I still could not remember the “Material Girl” lyrics, and could barely move my left arm without the shock of exquisite pain.
Lucky for me, our band is known for being ludicrous, so it didn’t matter that I had to read the lyrics stiffly to perform them. Yet even reading them was difficult, for in doing so, I had to sing, listen for musical cues of when to come in, and move my body in more or less rhythmic fashion. There was so much I had once taken for granted that I now struggled to do. My bandmates thought it went over hilariously well. I was mortified.
When I returned home, I made an appointment with another neurologist. This time I was determined to continue with tests until something came up. I had taken a look at an MRI report from more than a year before. What were those fifteen small “unidentified bright objects” on my brain? Were they always a normal part of aging? Could they relate to something else? And what about the burning in my arm, which an MRI showed to be synovitis? Why did I have synovitis first in my right arm and now in my left? The doctor agreed to prescribe more tests to rule out multiple sclerosis, lupus, and a squiggly word on a lab slip that I tho
ught said “Lyme.”
Until then it had not occurred to me to consider Lyme disease. Wasn’t that something that was on the East Coast only? Then again, I was someone who bounced back and forth between coasts. In any given week, I might be in San Francisco, New York, or five cities in five different states. I recalled that I had found engorged ticks on both of my dogs, several times as a matter of fact, and even as recently as a few months previously, shortly after being in Washington, D.C. Upon seeing a wad of matted hair on my dog Lilli, I cut it off, and blood spurted onto my fingertips. Had I injured my dog? I brought the wad closer to my eyes, and the fleshy-looking piece began to move, legs bristling, combing the air in a desperate search for another patch of warm skin. I nearly vomited with disgust. Both of my dogs had received Lyme vaccines as a precaution, but I now took them to their veterinarian to be tested just in case.
Why had I never thought to test myself? The reason was simple: I had never seen the “bull’s-eye rash” that everyone said was the defining sign of a tick gone bad. I had read about it in a newspaper or magazine. I thought that “bull’s-eye” referred to a visible tick bite surrounded by a thin red ring about the size of a wedding band. But now, unsure as to what it looked like, I did a search for Lyme disease on the Internet. Up came a website with photographed examples of erythema migrans, the rash characteristic of the spirochete borrelia. My scalp prickled. There was my rash. I recalled it: a huge red splotch wrapping my shin, just below the sock line, about four inches in diameter. What was that? With my impaired memory, I tried to piece together clues. I remembered seeing the growing rash and thinking it might have been caused by a tick, but there was no red circle. So I assumed it was a spider bite. Now, after viewing these examples from the website and reading the descriptions, I knew that rashes did not necessarily develop the bull’s-eye immediately or at all, and the bull’s-eye itself was not necessarily a thin perfect band; it could be the remnants of the large rash as it cleared outward from the center. It might be better described as a cloudy halo, sometimes well demarcated, sometimes messily, appearing in some cases like the primordial outline of an unevenly submerged volcanic cone, as mine had appeared when it gradually faded over the month. In more than fifty percent of the cases, the website said, the patient never even saw the tick bite or the rash.
The most dangerous ticks, another website reported, were nymphs, so small as to be the size of the period in this sentence. They often went unnoticed. Now I recalled that at the center of my rash there had been a very black dot. I remembered its blackness, and that it was unusual. The dot was rounded and raised, so I assumed it was a blood blister formed from my scratching at the rash. When it fell off, it left a pit with edges that continued to slough. Soon more rashes appeared on the sides of my lower leg, and then three more bloomed on my upper arm. I remember thinking I must have had an infestation of spiders that dropped down from my ceiling at night. But the website led me to new conclusions: As Lyme disease disseminates, the rash may appear on other parts of the body.
I then recalled that sometime later, the tops of my feet had gone numb, and I had wondered whether the rash had anything to do with it. I had mentioned this to my doctor during my annual checkup, and I remembered the approximate date of that appointment, November 1999, shortly before my mother died. In some quick tests of my ankle reflexes, which proved absent, my doctor had scratched along the top and bottom of my feet, which lacked normal sensation but strangely were also painful. She concluded that I had peripheral neuropathy but no other apparent neurological problems. I would keep a watch for other problems, but for now, we agreed, this symptom seemed only a curiosity, nothing to worry about.
Three years had passed since my feet had gone numb. As I scanned the websites on Lyme disease, I felt the heightened tension of reading the inevitable conclusion of a murder mystery. Here were all the clues, so obvious now: the rash, the exhaustion, the numbness, the stiff neck, even the hypoglycemia. Reading the list made me feel as if I were watching that old show This Is Your Life, in which sentimental details from someone’s past were dredged up and paraded before the public: an old math teacher, a boy once dated, a first boss. But instead, these were the visitors from my past: thinning hair, rapid heart rate, hypersensitive hearing, palpitations, the sense of internal vibration (my Dolby Digital Syndrome!), stiff muscles, migrating joint pain, ringing in the ears, sensations of burning and stabbing, a crackling neck, synovitis, insomnia. Then came the cronies of late-stage borreliosis: such cognitive problems as slowed mental processing, geographic disorientation, lack of concentration, and even hallucinations, my visitors in the night.
A new question came to mind: When had I been bitten? Where, exactly? Had it been while I was walking the pastures in New Jersey, attending an outdoor dog show in early autumn? Was it during the spring when I was in upstate New York, visiting my editor, who was ill? Did it happen during the hot summer when I went to a writers’ conference in Old Chatham, New York? Was it at the outdoor wedding in Dutchess County? Or had it been when I was hiking the grassy woodlands of Sonoma, Mendocino, or the Yosemite basin? Did it happen in China, Italy, Poland, or Czechoslovakia, places I had visited that had borrelia ticks of a different strain? It was impossible for me to know, because I had led such a peripatetic life recently. A tick that had attached on to me in one location could have been transported home with me to San Francisco.
Yet this was the question that came back to me throughout the day and in the middle of the night. I could not stop imagining the various scenarios, me blithely enjoying myself, walking along a grassy path on a gorgeous day, while the little vampire scurried up my leg. I wanted to envision it so that I could uselessly ask: “Why me?” Why had I, out of hundreds or thousands who might have passed that same spot, become the hapless meal for a nymph tick? What was I doing while the spirochetes were swimming in my bloodstream, using their corkscrew tails to propel themselves quickly into my tissue, my organs, my brain?
Because that tick bite had changed the course and quality of my life, I wanted to be able to capture the precise moment, see it as live feed on a CNN monitor. I wanted to play it back repeatedly, and the moments right before and after, as we do with all the great and terrible moments of our life, the ones that are both personal and universal, the seconds that changed our world forever, be they the birth of a child or the death of a loved one, the assassination of a great leader or the collapse of the World Trade Center towers.
I knew my doctors would advise against gorging myself on excess information, but I was desperate to know as much as possible about the parasite in my body. I searched the Internet again and found a support group, inhabited by a virtual underworld of longtime sufferers of Lyme disease. The recent posts came from the newly frightened, often the mothers of children whose perfect peach skin had been defiled by a tick and who were now listless and doing poorly in school. I had yet to be diagnosed, but I felt certain I had found my culprit.
In reading the posts, I learned my case was typical. I had spent a few years looking for a cause. I had had surgery and more than $50,000 of diagnostic tests. Some of the Lymies, as they called themselves, had been long undiagnosed—some for ten, twenty, even thirty years. Like many of them, I had been told Lyme disease was rare. There were only 139 new California cases reported in 1999, the year I was probably infected. Reported cases, the Lymies countered. They knew of a Lyme specialist in San Francisco who had treated five hundred patients.
Now what should I do? My virtual friends were more seasoned warriors than I, of both borrelia and ignorance in the medical community. They urged me to avoid the screening test most doctors gave, the enzyme-linked immunoassay, or ELISA. It had a ninety-percent specificity but only a sixty-five-percent sensitivity: this test delivered an unacceptable level of false negatives. In contrast, tests for anthrax were 110 percent sensitive, which meant some false positives. With a deadly disease, wasn’t it better to err on the side of being overly inclusive? Yet the opposite was true of the screenin
g test for borrelia. If you take the ELISA and it’s negative, the Lymies warned, that is what your doctor will believe, and you will not be given the Western blot, the test given to those who test positive on the ELISA. The Western blot is a more sensitive test, they said, but the disease has to be diagnosed by someone who recognizes the whole panoply of history and clinical symptoms.
Unfortunately, few doctors took the time to be updated on the intricacies of such a clinical diagnosis. Why should they? They had never seen a Lyme patient. For the latest information, they depended on one-sheets that spelled out the basics: “Use the ELISA screening. If it’s positive, it may be a false positive, unless you see the bull’s-eye rash. For actual infections, ten days of antibiotics will suffice.” Even newscast doctors received press releases with similar advice, and without questioning the source, they passed this along to viewers as sound advice. But the ten-day “standard” took as its basis a single study considered grossly flawed by many Lyme doctors who saw hundreds of patients each year. Ten days of antibiotics was a recipe for relapse, the Lymies said. That was like saying one Roach Motel was sufficient for any house, no matter how small or large, whether you had seen one roach recently or your house had been thick with them for years. If you don’t believe undertreatment is dangerous, the Lymies told me, look at us. We are the fallout from this advice. We relapsed and were refused further treatment. We who were once professors, lawyers, carpenters, doctors, social workers, teachers, and busy mothers became bedridden, then lost our jobs, our homes, and sometimes our hope.