One fine fall morning in 1999, when I put my two feet on the floor and attempted to entrust them with my entire body weight, I found myself in an instant lying on my side contemplating the darkness under my bed. It happened so fast, I never even tried to break the fall with my hands. Elbow, hip and shoulder hurt sharply where they hit the floor, but there was another kind of pain that overshadowed these.
As I lay there trying to make sense of what had just happened, I located the pain of my lower back and the pain running down the back of my legs, deep into the back of my knees, all the way to the outside of my ankles. But beyond that was a less specific, less sharp pain I could not put my finger on. It seemed to me that everything I had ached and ached more when I moved. I found that I was not paralyzed. I could move my legs, painfully– and painfully is how I managed to roll onto my hands and knees. But any attempt to stand was thwarted by the fact that my knees would not straighten under any weight at all. I slowly, “step” by painful “step”, crawled to the bathroom and used my arms to hoist myself onto the toilet. It was difficult to relax enough against the pain to urinate, but, having given birth twice, more naturally than not, I was quite familiar with Lamaze-style breathing. This I employed pretty much instinctively and achieved my goal. Then, I went back down on my knees and crawled slowly into the kitchen, where I was able to reach up, open the refrigerator door, grab a bottle of juice and a piece of bread and crawl back to bed.
I realize now that, in addition to the physical pain, my brain was strangely addled. I could not think clearly enough to form the thought that maybe I needed to call someone, even if there had been someone to call, other than 911. I was fairly new in town (10 months), unemployed, divorced, children grown and gone and what people I knew in the area were acquaintances, not people you call when your legs don’t work. When the pain ebbed some, by virtue of my lying perfectly still, I was able to remember that, because of painful back spasm episodes dating back 20 years, I did have on hand some muscle relaxant. Maybe it would work, even though the expiration date had long passed. I ate my bread, I drank my juice, I took Tylenol and the muscle relaxant. I lay there for several hours, only able to doze a little bit at a time before the pain brought me back. I could think of no plan. I had no idea if I would ever walk again. My only comfort was my cat, who adjusted to this strange turn of events with aplomb, walking gingerly in response to my muffled shrieks to take up a position in the angle of my hip and curled up legs. He licked my fingers, regarded me reassuringly through his feline ignorance, then went to sleep.
I truthfully cannot remember how it is I got to the poor folks’ clinic three blocks away. Since my brain was not working properly, that part of the story did not get recorded in my memory. But, somehow, late that day or maybe the next, I remember arriving in a car and a nurse bringing a wheelchair to get me into the clinic. I think it is possible that the kind gay couple in the next apartment, who sometimes fed my cat when I had to be gone, suspected something was wrong and knocked on my door. It was probably one of them who took me to the clinic, but I have never been able to reconstruct that part and I was too sick later to think of it , to thank them.
At the clinic, after an indefinite period of being treated as though I were a drug addict faking pain in order to get painkillers, I finally convinced a wary physician’s assistant that I was on the up and up. I don’t blame her too much, since the location of this clinic probably resulted in it being frequently the target of such shenanigans. She said she had no idea what could be wrong with me, but mumbled something I now think was the word “fibromyalgia”, gave me some Percoset samples and a renewal on the muscle relaxant, and said “wait and see.” Anything further, like sciatica, she said, could not be speculated upon without a CAT scan and since county medical would not pay for that, there we must leave it. (Unemployment compensation in California comes with county medical insurance, so this visit and the prescription were covered.)
I went home and took the maximum dose of the drugs. It did not stop the pain, but it gave me enough psychic distance from it to think, ever so blearily, about my situation and my future. After a day or so on the drugs, the pain began to ease and I could move my legs without groaning. A day or so after that, I could walk a few steps at a time, grabbing the backs of chairs and tables, before back spasm pain would cause my quick return to bed.
My mind got clear enough for me to formulate several thoughts. The first was– I’ll never dance again as a performer, certainly not in a troupe. I had, at that point, been a bellydancer in various small town amateur troupes for about 20 years. The troupe I was currently a member of had a performance the coming weekend, the Big Show we had all been working toward for a year. I knew I would not be able to perform at that show and that this unpredictable collapsing business made me much too unreliable to have other dancers dependent on my presence.
I spent some time grieving over that prospect before the next thought came. That thought was, “there is something really, really wrong with me, something way beyond a bad back or migraines or uncontrollable hay fever, all things that had caused me to miss work in the past. I am very sick and my entire life from this point forward must be directed toward finding out what it is and what can be done about it, if anything.” What could it be? Cancer? ALS? MS? chronic fatigue syndrome? I thought about all the extremely strange health problems I had had in the last 25 years, all the times my doctors had said to me “I don’t know why this is, but….” The PA at the clinic had speculated that recent stress had triggered fibromyalgia, but I didn’t know what that was.
Eventually, I remembered that I had suspected Lyme disease nineteen years before that, but my doctor had vigorously pooh-poohed it. When I insisted, through my fever, that it had to be Lyme disease, what else would cause such an enormous bull’s eye-like rash around a tick bite, he had given me a 10 day course of erethromycin to humor me, saying, “That’ll knock it right out.” Of course, it is now established that 10 days of anything is not enough and erethromycin has little effect on the Lyme bacterium.
Later, another, more respectful doctor had gone so far as to give me a test, the newly-invented “Lyme-titer.” When it came back negative, I had put Lyme disease out of my mind until still another doctor thought to repeat the Lyme-titer and it, too, came back negative. I had never thought about it again until just lately, when my best friend had noticed me groaning as I got up out of chairs and cars and had told me she had been the same way not long ago.
She had been diagnosed with Lyme disease. She had had the distinctive rash, had gotten a positive Lyme-titer and had improved after a short course of oral antibiotics. Now, I revisited this idea. I thought, what if the tests were wrong? How much chance is there of that? What are the symptoms of Lyme disease other than the rash, the flu, the arthritis? (I had been diagnosed with osteoarthritis years before the tests.)
I groped my way to my computer, got online and typed Lyme disease into a search engine. An hour or so later, there was little doubt in my mind. I was an absolutely classic case, even if you only read the most conservative, “oh, Lyme is no big deal” doctors. It began to sink in just how big this was. According to some people, I could die from it. An hour-long conversation with Lee Lull, then Coordinator of the Marin County Lyme Disease Support Group, whose phone number I got out of the phone book, turned my suspicions into near-certainty. According to Lee, the test results were very likely to have been false negatives.
The doctor who had pooh-poohed my suggestion that I might have Lyme disease, as I stood before him with a classic rash two feet in diameter and shivering with flu-like symptoms, had been wrong for oh, so very many reasons. His view of me as a woman depressed by her “failure” as a wife and her futile attempts at professionalism, experiencing what were probably the symptoms of somatic displacement disorder for decades, were in fact his own projections related so much more to his own history than mine. (Small town, I knew everything about him, he knew everything about me.) I researched Lyme disease thoroughly in the next few days, after which I knew my battle to live a normal life and maybe, any life at all, had just begun.
Although I can and will reconstruct the course of my case of Lyme disease in later posts, I begin with this experience, even though it is most accurately viewed as being in the middle chronologically. I do this because one of the hardest things to understand about Lyme disease is how hard it is, at least under current conditions, to diagnose.
It is possible for one to, like me, go along for decades dealing with health problems that appear to be unrelated, separated by periods of relatively good health, until something happens that cannot be ignored or explained. This experience, finally and hopefully, stimulates the victim or victim’s loved one or victim’s doctor to focus and to start thinking outside the little box of each specific symptom by itself. Like an alcoholic “bottoming out”, a chronic Lymie may have to hit bottom in this way before determining to find out what is really wrong with her.
My collapse was the experience that made me recognize that I was much sicker than I ever suspected, and that I could well be facing the beginning of the end of my life. It was this experience that caused me to realize that none of the dozens of doctors I had seen over the course of more than two decades had even come close to diagnosing the underlying cause of my pains, injuries, insomnia, depression, digestive troubles, allergies and intermittent, inexplicable and overwhelming fatigue.
How the collapse came about is a perfect example of the close relationship between Lyme disease and stress, a connection that often results in its misdiagnosis as simple clinical depression or fibromyalgia. In September, 1999, in spite of, or perhaps because of, my education and experience, I was unemployed. I was staying alive on a mix of unemployment compensation, freelance writing, temporary office work (read data entry) and part-time newspaper work. I had also received from some local non-profits what can only be called charity. I had been, for the preceding five years, a reporter for four different community newspapers in northern California. Between my PhD in Cultural Anthropology and my advanced age (late fifties), my patchy computer skills and patchy job history and the slow demise of newspapers, I was both vastly overqualified and vastly underqualified for the majority of positions available, either where I lived or anywhere.
I was overqualified in part because my age, education, years of part-time college teaching experience and status as a published writer made me tend to be mouthy and insubordinate on those rare occasions when I was not charming and personable. Mainly, I was potentially antagonistic to being edited by people younger, less educated and, to my mind, pathetically less hip to the workings of society than I. In addition, I felt my editors were, necessarily, overly servile to corporate expectations about news. I kept getting called on the carpet for digging too deeply into environmental and social matters of interest to the community rather than writing the pleasant fluff news corporations expect to squeeze between the advertising in small town newspapers. I was never fired outright, but was often harassed into the “take this job and shove it” mentality. I always managed to quit before getting fired, thereby making the harassment program entirely successful.
I was underqualified in that I had had no formal journalistic training, even though I rapidly acquired more newspaper skills than the average journalism graduate displays, by doing everything from photography to classified ads to obits to columns to layout. But, I was underqualified mainly by virtue of the fact that I had never had any formal computer training and had learned all computer skills in a haphazard and patchwork manner. Even the most illiterate rookies had at least learned computers starting in high school and could compute rings around me any day of the week.
I was frequently the butt of ridicule by those assigned to bail me out of whatever techno-snarl I may have gotten myself into while learning new programs on unfamiliar computers using hardcopy manuals written for versions of the application other than the one I had. Nevertheless, newspapers had become my destiny when perennial budget cuts, intractable sexism and implicit ageism threw a major monkey-wrench into what little chance I may have had of an academic career. Those factors combined resulted in my ancient age, 46, when I finally finished my PhD.
After obtaining that dubious document in 1986, I was never able to obtain a full time permanent teaching position—too old, wrong gender, wrong degree, history of subversive activities. I had struggled along on part-time lecturing and part-time office work until the last promise from the last dean for a permanent half-time lecturing position at Humboldt State University in Arcata departed into the gloom with the phasing out of the college ruled by the dean who had made the promise.
My department chairman, who had also made the promise, called me on the phone in January, 1997, at the beginning of the semester I had hoped to begin teaching half-time and said, “You are at the very top of the list for part-time teachers, but our budget just got cut and we cannot hire outside part-timers this semester. Can you make it until September?” I told her, “Well, no. I’m probably going to have to eat between now and then. I’m going to have to find a job and most people won’t hire you if you plan to quit in September and that’s something I won’t lie about.” I’m something of an anachronism, I realize, in the workplace, because of this reluctance to lie in order to get a job.
A series of unfavorable divorce settlements, one at that time still pending, as well as the fact that I started out poor and had worked my way entirely through college and grad school, all guaranteed that I was living month to month in a tiny studio apartment near campus at that point in 1997. Unable to find any acceptable job locally, I fell back on the only other thing I knew how to do and could still do physically, that someone might want me to do. I had, throughout the years, done some stringing for local newspapers. I did have clips to show perspective editors and I did look young enough to downplay my age long enough to get them interested in the clips, I hoped.
It would mean I would have to leave the county I had lived in for 30 years, excepting the three school terms I had left to finish graduate school, but I nevertheless studied the California Publishers Association job listings and applied for a staff writer position in a nearby county. I got the job on the strength of my clips. The hourly wage was $7.50 per hour and the benefits sucked, but I was at least doing something I felt competent to do and, within the newsroom, I felt that I was among colleagues. And, I did, for the first time in my life, experience something that was sort of like having power.
I was an excellent reporter and a pretty good photographer as well, but my uncontrollable penchant to investigate, when investigation was not the corporate assignment, resulted in my being pressured out of that job in a year. Another such experience followed, in another northern California newspaper, this one even more what we called an “ad rag” than the other one. A third reporting job was better, since the paper was an independent one run by former reporters and I had managed to get a job located in the cultural purview of Ecotopia, as Humboldt County had been, but my position had rapidly deteriorated when the editor who hired me left a week later taking with him our deal.
Our deal was that he would throw a hard news assignment at me once in a while, if I would uncomplainingly relinquish the status I had enjoyed at the other newspapers as lead news writer and agree to cover the community news beat without complaint. After he left, invalidating the deal, I found myself covering pancake breakfasts and store openings and school board meetings almost exclusively, as well as laying out the community calendar. I was, in short, miserable, a situation not improved by the sexism of the other reporters and the resentment of the females in the ad room that I, a female, had been hired into the previously exclusively male newsroom to which some of them aspired.
At the time of the experience I think of as “my collapse,” I had quit this last reporting job in desperation, to attempt the utterly absurd–a job as a publicist for a software corporation. I had been lured by the promise of twice my salary at the newspaper, the assurance that my relative computer ignorance would not matter and the tantalizing idea that I might get to go to Nepal to publicize a company project there. I realize now that the job offer was the result of a feminist appeal I had made months earlier to the wife of the owner of the company.
She, a writer herself, had been shocked at my tale of a PhD with four years of reporting experience forced to write pancake stories while looking at the picture of Marilyn Monroe taped to the back of the computer of one of her sexist male colleagues. (I love Marilyn from a feminist perspective, but not that photo in that context.) Though I didn’t realize it when the job offer came, I was in fact being patronized, or more accurately, matronized. I should have realized my new boss would probably fire me as soon as he could justify it to her, preferably before medical benefits kicked in at three months.
When I was fired from that job after six weeks, I went into something akin to shock for five hours. I drove home and sat inside my car, the place I felt safest in the world at that time, stared at the roses growing beside the parking lot and shivered. I couldn’t even cry. I knew I was done for. What jobs are there for 57-year-old reporters in competition with young journalists newly minted from journalism school, probably male and in any case, much less filled with editorial opinions based on a lifetime of amateur and professional social observation?
Rationally, I told myself I was nuts to take that job, double the salary or no. I was, for all their intents and purposes, not only computer-illiterate but I was supposed to be the publicist and I could not market my way out of a paper bag. Just the occasional ad writing every reporter at a small paper is forced to do was hell for me and corporate culture is in many ways the opposite of newsroom culture. The black humor appreciated in the newsroom, where you better joke about what you write about or you’ll become an alcoholic (as many reporters do), was viewed with alarm in the software company, where I was a depressed person in a “can do” environment. But, rationality aside, I had never been fired from a non-waitress job and I was, quite literally, stunned.
There followed four months of pure hell, as I looked for unobtainable reporting jobs (I was just too old to compete), jobs with non-profits that had already been promised to someone within the organization but advertised nonetheless to meet legal requirements and community-college teaching jobs with endless lists of applicants much more computer-literate than I, and therefore believed to be more in touch with young people than I. To be completely honest, I did turn down a job that would have paid $10 per hour, answering emails and phone calls for a nutritional supplement company, because my prospective bosses just too closely resembled the set of New Agey Silicon Valley aping bosses who had just fired me from the cult-like software company. More psychobabble, I could not endure.
I finally managed to come up with some work I could do when a newly formed newspaper in my hometown area, Garberville, offered me an intermittent part-time freelance layout job. It was the commute that was the killer. I would drive from Guerneville to Garberville, some 150 miles, work three 12-hour days, design most of the paper, sleep in my car on land owned by a friend for the two nights I was there, then drive back 150 miles and spend the rest of the week desperately looking for more work. Alternatively, I took temp jobs requiring me to commute two hours each way in the other direction, in order to type names and addresses into a database all day long.
I think we can safely say I was under a great deal of psychological and physical stress at that temp job, from humiliation, from commuting in Santa Rosa traffic, from sitting in typing position for hours at a time and from the unremitting and unutterable boredom of the work. They loved me there because I am such a skilled and conscientious typist, but when they called the agency and asked for me later on, I had to turn it down. Even before my collapse, I was dimly aware I had limits.
The newspaper layout work was actually sort of fun, at least it involved experience, intelligence and skill, but 10 or 12 hours working on a deadline with changes coming in constantly as new ads and news stories were added way past any deadline I suggested, could be very frustrating and was an enormous strain on my body. Combined with too much driving and sleeping on the foam mattress crammed down on top of the folded down back seat in my compact car, it is a pure wonder I made it as long as I did before I finally collapsed.
During this period of time, my one joy in life was the bellydance troupe. I was the oldest member, to be sure, but for a year I had been pleased to be able to keep up with or out-dance the youngest member, who was 15. I had returned to bellydancing after the three-year hiatus caused by the fulltime reporting jobs. During that time I had either had no time or no access to bellydancing. The reporting job before the collapse, however, was located on the coast in an area culturally similar to Humboldt County. In Sebastopol, I had a variety of bellydance experiences to choose from and joined two different troupes, one as a dancer, one as a drummer. After I got fired, the bellydance activities were the only positive thing I had to counteract the depression stemming from all the job-hunting and temp and part-time work.
On the weekend before my collapse, I had three performances scheduled, along with a dress rehearsal that fell in the exact middle of my weekly-three day commute to Garberville. My teacher was such a good producer and choreographer that the dances were intricately and seamlessly choreographed. The sudden disappearance of one dancer could not easily be “worked around.” It would throw the whole troupe into confusion and that included dress rehearsals.
So, I got up at 4 am, drove to Garberville, worked an 8-hour day, drove back to Guerneville that afternoon for an evening dress rehearsal, slept at home, got up again at 4 a.m., drove back to Garberville, put the paper to bed and then drove like a maniac back to Sonoma County, changing clothes in a shopping mall in Santa Rosa, to make it to the outdoor performance scheduled at 6 p.m. in Sebastopol. Then, because of scheduling mix-ups, the entire troupe stood outside for an hour in flimsy bellydance costumes as the fog blew in on icy winds before we were able to do our 20-minute performance, with bodies much, much too cold too dance safely.
I felt things pulling and snapping as I danced, but there was no stopping. Amateur or no, I was a trouper and the show must go on. The following evening, sore and aching, I wiggled out of a scheduled appearance on the grounds that it was a party, not a show, and we were not doing the choreographed dances. Sunday was the problem. We were going to a bellydance festival where we had two performances, one early, one late. I filled myself with Tylenol, more Tylenol than I had ever taken before, but still less than the recommended full dose. Oh boy, no pain all day, I danced and danced.
On Monday morning, I woke up feeling very stiff, sat up slowly and put my feet on the floor, expecting perhaps a major back spasm of the type that had plagued me occasionally for 30 years. The pain of that, I knew, would keep me flat on my back in bed for several days, maybe more, an experience I had had many times, but it would eventually go away if I did not hurt it again. I dreaded it. I knew it would stop my dancing temporarily and might impact my working, but, as it turned out, it was worse. It was the collapse I have described.
After the Lyme research and the phone call, I decided I wanted to speak to the physician at the clinic, rather than the PA. I had more specific questions now and I did not trust the PA to listen to me. This time, I could walk to my car and drive to the clinic. Clinging to the railing on the ramp for the disabled, I painfully crept, bent over, into the clinic where I was seen by a respectful woman doctor. Reviewing my file, putting me through various movements, she told me the PA could be wrong about the fibromyalgia and/or the sciatica.
She said she suspected sciatica, but that usually did not send pain all the way down to the feet. She said she, too, could go no further without a CAT scan. I told her about my suspicion that it was Lyme disease, about the history of tick bites, one with a classic rash, the negative test, the doctor’s ridicule. She looked at me gravely and said, “Lyme disease sounds highly likely to me, but there’s nothing I can do for you to diagnose Lyme disease that county medical will pay for.” The nature of this response, one I now know was unusually knowledgeable for a non-Lyme doctor, may be related to the fact that the clinic is in Sonoma County, the first county in California to report a Lyme case and one that includes centers of Lyme activism.
It was enough. It was enough to tell me that my life here was certainly over and my life might be over soon, period, according to what I had read so far. I knew I could not work. I knew that being unable to work would disqualify me from unemployment compensation, but that getting qualified for state disability on a diagnosis of Lyme disease, even if I could get one, was unlikely. That much had emerged in my conversation with Lee Lull.Lyme disease was not at that time considered disabling by the state, based on the mainstream medical “Lyme disease is no big deal” school of thought.
However, Lee had planted a seed in my mind. She had told me that she knew of a low-income Lymie who had been able to get on state disability with a diagnosis of osteoarthritis and carpel tunnel syndrome. Of such diagnoses, I had no shortage. I needed only to consult my medical records of the last 30 years, most of which, through a fluke, I happened to have on hand.
I still had my part-time work in Garberville and I still had a month or two of unemployment compensation for those weeks when I did not go to Garberville. You can’t apply for state disability while on unemployment and it takes a while to get state disability once you are off unemployment. How to legally negotiate through this bureaucratic Catch 22 was more than my Lyme-befuddled brain could cope with, but I did see that if I could manage to support myself on part-time work between unemployment and disability, I could then, at least, lay my aching body down and rest each day, while trying to arrange for a doctor-based diagnosis and, hopefully, treatment. Clearly, I could no longer try to find a full time, highly stressful reporter job.
That fact was not trivial. At that time, I was on the short list for a staff position at the Novato Advance in the San Francisco Bay Area. There were three people on the list, they had told me, and I would hear one way or the other in two weeks. Post-collapse, I could not imagine how I could ever move to Novato, physically move my belongings one more time with my dysfunctional back, move even further away from the country and deeper into the urban area I had been avoiding for 30 years and then start still another new reporting job with new contacts, new workers, new computers, new deadlines and new rules. Could I even write a coherent sentence; let alone, a factual, coherent story? It was hard to imagine through Lyme brain fog.
And, I had little hope that I would beat out the two probably much younger applicants and get the job. So, my first move was to call the Novato Advance and withdraw my application. I grieved over that for a few days, recognizing that it meant my career as a reporter, fledgling and tenuous as it was to start with, was now over. Perhaps my working life was also over. I was now, undeniably, on the downward road, even in the midst of my surprise that the road could get any more downward than it already was. Clearly in my mind were the dozens and dozens of personal Lyme stories I had read on line, of medical articles describing what chronic Lyme is like. Recognizing my case in those, I could find no reason why that would not also continue to be my fate. I knew by now that I had had untreated Lyme disease for 28 years. Based on my extensive reading, I knew my prognosis was very grim.
With the rent coming due on my overpriced apartment, however, and my health as shaky as it was, I did get a grip on myself. I set out on my next trip to Garberville, hoping but not believing, that I would be able to work three days at the computer. This time, I spoke to everyone I knew about a place to live in the area, it being a place where low-income housing is next to impossible to find. If I’m going to be this sick, I thought, and get sicker, which I clearly am going to do, and maybe die, I at least want to be in the community I helped build, where what friends I have are located, the nearest thing I have to home. If dying was what I had to look forward to, I was resolved to at least die at home.
At this point, something happened that would be called by most in my back-to-the-land community, “cosmic”. Some friends drove by me as I got out of my car near Garberville one day, slowing down to welcome me back, expressing surprise at my return. I told them I was back because I believed I had Lyme disease and could not work hard enough to support myself where I was. Before I could restrain myself from sullying the welcome with unseemly materialism, I blurted out, “Hey, do you know anybody that’s got a place I can rent, for a while?” They looked at each other, parked the car and the husband walked over to me and said, more or less, “Have I got a deal for YOU!!” It turned out that they were looking for someone to occupy a lean-to studio they had just added to their old barn in Redway. This person would also caretake the place while they went to Mexico for six months, to, among other things, find alternative treatment for the wife’s Lyme disease!
“I’ll take it,” I said. So, after still another hellacious move, I, aided by my grown son, stashed all my earthly belongings in the barn, worked out a rental agreement with my friends and moved into their newly plumbed and partially painted lean-to. It was not really an apt., even a studio apt., but it was certainly an improvement over the back of my car on a friend’s driveway in the mountains.
The deal included my finishing the plaster job on the ceiling, using a roll-on brush. I already had tendonitis in my right elbow from scrubbing down the apartment in Guerneville in a vain attempt to get my $800 deposit back. (They only sent me $400, which made me so mad I kicked the barn door, thereby badly injuring my foot, which I limped around on for the next six months. “Volcanic anger” can be a Lyme symptom.) By now I was well aware that repetitive movement is an especially bad idea for Lymies. Lyme disease will exacerbate old injuries, cause new injuries and tendonitis is, like arthritis, one of the hallmarks of Lyme disease.
The prospect of using that injured right arm to whitewash a ceiling was not pretty, but I did it over a period of days, filled with Percocet. At work, this was the elbow and arm I used steadily for hours operating the mouse to lay out the paper. Before I finally quit and applied for disability, that elbow was excruciatingly painful at work and at home and had begun to grow a boney bump on one of its outward protuberances. For the four months after I quit work, I lay on a mattress on the floor of the lean-to, too tired to face climbing into the loft intended as bedroom, not even getting up when people came to see me, and watched that bump grow. For a period of several years after that, I lost the ability to fully straighten my arm.
Only one good thing happened after the cosmic coincidence that allowed me to be housed by other Lymies. The most outspoken and knowledgeable Lymie in that part of the county, a good friend of the lean-to owners, heard of my plight and came to rescue me. Jim (not his real name) called a local PA, herself a Lymie, and talked her into prescribing me a big course of doxycycline, if I came in to see her. After my experience with the local doctor 19 years before that, I could hardly believe I was going to get any treatment from anybody local. I told Jim, “I have no insurance, not even on county medical here yet. I cannot possibly pay for the PA or the doxy.”
Jim, however, bless his Lymie heart, insisted I go, paid for the visit and the antibiotic, then dragged me kicking and screaming to a local yoga class, telling me how much yoga had helped him. (I had done yoga sporatically for 20 years, but could not imagine I could do even the simplest thing through the pain I was experiencing.) He also insisted I use his hot tub, along with my Lymie landlady before she left for Mexico, on the theory that heat kills B-flats. (Bb is the abbreviation for Borrelia burgdorferii, the Lyme bacterium. It is also the abbreviation for the musical key of B-flat, a key I have always hated because it’s hard to fiddle in–I play fiddle, as well as drum and guitar. I say B-flat mostly to amuse myself, but also because the other ways to refer to B. burgdorferii are hard to say and harder to type.)
Strangely enough, the first time I ever heard the words “Lyme disease” had been from Jim’s mouth. Nearly two decades before, Jim had buttonholed me at a community meeting. At the time, he had gone on so long and so strongly about the dangers of Lyme disease in our area and how little people knew about it that I could think of little but how to extricate myself. But, much of what he said had somehow sunk in and it was because of this harangue that I was so sure I had it when, shortly thereafter, I had developed the huge rash around a tick bite and gone to the doctor to be ridiculed and misdiagnosed.
Jim’s theory then (and now) is that our local doctor could not be trusted to make decisions about Lyme disease because he, himself, had Lyme disease and was not thinking clearly. That sounded crazy to me until I went to him with my tick bite rash and severe headache and joint pain and was given a number of reasons why it could not possibly be Lyme disease, even though I told him tearfully that I had literally injected myself with tick contents trying to remove the tick. These reasons turned out, when I later researched it, to be even then out of date and otherwise inaccurate.
I don’t know how much the hot tub helped. I have since read that you have to achieve a body temperature of 102 degrees for 20 minutes to have any effect on the B-flats. The doxy, however, did put a dent in my symptoms sufficient to allow me to work another month, after which the PA (with her supervising doctor’s consent, of course) put me on an eight-week course of Biaxin (clairethromycin). That decreased the pain enough that I was able to increase my work at the paper to 30 hours a week for the next three months. The decrease in symptoms was probably also due to the fact that I had eliminated the huge commute and the sleeping in the car and to the fact that the three 12-hour days I sometimes worked were now spread out into several six-hour days.
About three months after the beginning of the Biaxin course, however, the pain and the brain fog, which had never really gone away, began to return. It was hard to know, now that my unemployment eligibility had run out, just how to get started on getting state disability. The problem is you have to be too sick to work, but there is no guideline as to how to define either “sick” or “work” and no state bureaucrat is about to tell you that. I was dragging myself in and piling mistakes on mistakes, crying all day and fighting with co-workers over nothing, but I was in fact managing to get the paper laid out each week to my editor’s satisfaction. I would go home each day throbbing, aching and exhausted, fall into bed, take muscle relaxants and pain pills, eat easily grabbable junk food, then rise badly at the sound of my alarm next morning and drag myself in to do it again.
I had a state disability application. The stumper was that the application asks for the day you became disabled. It was designed for amputees, not people with chronic illnesses that allow them to work badly and painfully long after the time when realistic treatment would have included bed rest and no stress. When the form asks “can you work” does it mean “without pain”? There is no one available to help poor people discover such things. Those of us raised to have an unshakeable work ethic are penalized under this system, for the drive to work through pain and illness until some crisis either kills us on the job or renders us unable to sit upright at the computer, pain or no pain. I finally realized there was simply no way to say I contracted arthritis or fibromyalgia or depression on x day and could not work from then on. I was going to have to just make a judgment call and take a chance.
So, on April 16, 2000, I called in sick (having warned my editor a couple of weeks before that I was going to do this and having told him why) and said to him, to myself and figuratively to the state, I am this day too sick to continue working. That day, I drove the 90 miles to Eureka, the county seat, and applied for county welfare and state disability at the same time, since I knew already that it would take a month of me not working before I would be eligible for state disability. The welfare was to cover that one month. I had no problem getting county welfare, which included county medical insurance. (I had paid for the Biaxin out of my pitifully low salary.)
What surprised me was that there was an unexpected bonus to getting county welfare. The county has a rule that recipients have to work for the county unless they are disabled. I had managed to get a (different) local doctor to sign the form saying I was too disabled to work for the county, based on my longstanding documented diagnoses of chronic fatigue syndrome, arthritis and degenerative disc disease. (This doctor laughingly threw my carefully worked out list of possible Lyme symptoms over his desk at me without looking at it, and said disparagingly, “oh, you don’t have Lyme disease!”, but that’s another story. He did sign the form and that’s what I needed at that moment, but I don’t think he earned the $75 I had to pay him out of my very shallow pocket for the office visit.)
The county social worker explained to me that every county welfare recipient that files such a form is required to apply not only for state disability, but federal, ie., Social Security Disability. I told her I had never thought of doing that because everyone told me you had to have a lawyer or you had no chance and, of course, I had no means at all to pay an attorney. At that point she told me a truly amazing thing. The county itself had two workers devoted entirely to getting disabled county welfare recipients on Social Security Disability, to relieve the county from paying for them.
I said, but I’m only going to be on for a month. Then, if I get state disability (which she felt sure I would get), I won’t be eligible for your worker anymore because I won’t be on county welfare. But, and here’s the most amazing part, she said that did not matter. Once my case got started, the worker continued it as long as I remained disabled. I could hardly believe it. Social Security Disability was within my reach.
The financial part of my situation now appeared to be resolved for at least a year and a half, possibly forever, and, once on state medical insurance (MediCal, which is what MediCaid is called in California), I could seek out what the Lyme websites had called a “Lyme-literate doctor” (LLMD). And that is what happened. When the state disability came through, it was based, miraculously, on my salary at the short-lived software company job, more money than I had ever earned in my life. So, my disability check was more than my wages at my recent part-time job.
Since the MediCal co-pay for people on state disability is determined by subtracting $600 from your state disability check and calling all income over that your co-pay, MediCal was fairly useless for paying the Lyme doctor I finally found. I ended up paying the vast majority of my medical expenses out of my disability pocket, but, luckily, right about then, the community property settlement from my divorce, which I had been trying to get for the preceding 12 years, suddenly came through. Moving out of the barn and getting appropriate Lyme treatment from a knowledgeable doctor suddenly became an alternative to lying on the floor in the gloom expecting death, which is what I had expected would happen when I quit work.
I still spent many months lying on the floor in the gloom expecting death, because LLMDs are not that easy to find, but now I had some hope that I could find a place to live before my friends returned from Mexico and needed their barn back and that, if I could find an LLMD, I could get to him or her, and pay him or her. As it turned out, after many phone calls, I was finally led to a Lyme-doctor, now retired, who was located almost in the very place I had just moved from. I had by that time moved to Trinidad, north of Arcata. Now, instead of commuting north 150 miles to Garberville from Guerneville once a week, I would be commuting 200 miles south from Trinidad to Sonoma once every three months.
Despite the commute, at last being accepted by a doctor who clearly knew a whole lot more about Lyme disease than I did was an enormous relief. I had assembled all my medical records going back as far as I could, ordered them chronologically, compared them to the list of symptoms I had derived from my reading to that point (the list now featured on my website) and compiled a list of documented and undocumented reasons why I believed I had Lyme disease.
When I handed the list to this doctor, he did not laugh and throw it back at me. He gave me a beautific smile and said, “Oh thank you very much. This will save us a lot of time.” He did not treat me like a drug addict, lunatic, hysterical woman or hypochondriac. He treated me like a colleague and asked me if he should call me Jentri or Dr. Anders. I quite literally burst into great tears of relief and said, “What am I calling you?” He said, “Walt.” I said, “Jentri.” He said, “Don’t worry about the tears, they are a symptom. Everyone does that.” I knew I had entered a new phase.
Like most Lyme doctors, who can expect every kind of harassment from insurance providers and may well not ever get paid for Lyme treatment, Walt did not accept MediCal as payment for Lyme treatment, though MediCal did cover my antibiotics after I had used up my $700 plus co-pay in any given month. Walt did, however, after I had been seeing him for a few months and he had learned of my Lyme activism, make an exception for me and did accept MediCal for the remainder of his office visits. I saw him for 2.5 years, making the dreaded trip every three months in my beater car, making a 5 day trip of it and sleeping, again, in the car because I could not afford motels. At the very end of the 2.5 years, I was able to stay at my ex’s apartment in Larkspur, making at least one of the nights in the trip more bearable.
What ended the treatment was not Walt’s call. It was the trip and my own assessment of the value of continuing oral antibiotics. In order to keep the antibiotics coming, I had to see Walt once every three months. The trip became so draining physically and financially that I began to fear that I was a danger on the road. I felt that I had the right to endanger myself to obtain treatment, but I did not have the right to endanger whoever I might involve in an accident due to my fatigue. In addition, I was bemused when I asked Walt when we could stop the antibiotics and he said, “When you plateau out,” and then could not explain that to me.
Also, I had had what I now believe was a Morgollan’s lesion during a Herxheimer reaction following my second course of Flagyl and I was annoyed that I could not interest Walt in looking at a picture of it. He had been my rescuer, but he was never interested in helping me cope with symptoms, only trying to get rid of as many B-flats as possible. I could hardly complain, since he had been so kind to me, but I felt I had gone as far as I could make possible, with the antibiotics. I became convinced that from this point forward, no one really knew what to do with long term, complicated cases like mine and Walt had actually said to me verbatim that he was, in my case, “flying by the seat of his pants.”
So, after 2.5 years, I just made a judgement call of my own, stopped taking antibiotics, stopped making the trip and swore that I would now do everything holistic in my power to prevent a relapse. That is what I have done, now, for 10 years and, although I am by no means cured or even hopeful of a cure, still have the physical and sometimes the mental symptoms of Lyme disease and am disabled by anyone’s definition, I am better than I was at the end of the antibiotics, have not had a relapse and, to my surprise, have managed to re-instate some of the things I had said good-bye to when at my worst.