Archive for June 4th, 2015


Well, crap. So, it turns out that this whole stinking blog has been about Lyme Disease—albeit unbeknownst to me until recently. Lyme and its accompanying co-infections and co-toxicities, which I detest with the full force of a lifetime’s pent-up scorn, turn out to be that vague “health problem” that had been plaguing me for over a year before I set out on my initial walkabout. And yes, I must insist on detesting it. Accepting something does not mean I have to like it, and unlike many other woo-woo new-age hippie chicks, I can not view this illness as a gift.  It did not happen “for a reason”—not everything does—sometimes random, horrifying shit just happens.  So, no, not “a gift;” rather, it is a vile scourge that destroys lives and incinerates dreams, and I would not wish it on my worst enemy (had I any—but to make a point, I wouldn’t even wish it on my lying, cheating, abusive, exploitive ex-husband. Yes, I was only married once, so there might be some old news in that last sentence for you to absorb.).

Where was I? Right. The long arm of motherfucking Lyme. By May of this year, I’d known for about 16 months that I have it (and the hideous co-infections babesiosis and bartonella). But I had no knowledge of ever having a tick bite, and had no idea, in fact, what a tick looked like. However, in the past month I had an unexpected breakthrough. A friend shared on Facebook an article written by author Amy Tan about her own case of Lyme, and in great detail (http://www.humanthology.com/lyme-disease/2014/9/15/slyme-disease-how-a-speck-changed-my-life-forever).  In her article, Ms. Tan did what no one had quite managed before: provided me with the right image for the first time. About a week after reading her article, I found myself standing in my bathroom in my pajamas with an image flashing through my mind:  a weird welt with a strange blackhead in the middle. Triggered and dredged up by that article, I finally had a flash and remembered my tick bite! I remembered trying vainly to squeeze that blackhead for several days, making myself bleed from the force of my thumbnails. I remembered eventually cutting “it” out myself, never knowing what “it” was. (It was a nymph, an infant tick—which are notoriously infectious.) I remember thinking, “Huh. I sure hope that wasn’t anything serious,” and carrying on with my life. Never knowing. Not remembering. Because there was nothing to remember. Do you remember when you changed your toothbrush? Every scrape or bruise you ever got? That’s how much a nothing that little speck was. And I was such an attention-seeking hypochondriac (because that is what women are who present with vague, ongoing, fatigue-based symptoms), that it never even occurred to me to seek medical attention for it.

As I stood in the bathroom in my pajamas, a few more visual memories came flashing in: no events or people, but the kitchen and bathroom of my erstwhile cottage in the Wilds of Philadelphia, plus my then-boyfriend’s bathroom. Locations where I likely hacked at that speck. Those flashes gave me context, and a timeframe. That boyfriend and I were together from August 2004 through the end of 2007. I seem to recall starting to have symptoms and problems around 2007/2008-ish. So I place that tick bite somewhere around 2006/2007, give or take. Suddenly, other inexplicable symptoms came flooding back: In 2007, getting so tired at my desk at work every afternoon, a daily post-lunch crash many orders of magnitude greater than any afternoon dip I’d known before; around the same time, a twitch in my left cheek, which made me alternately think I was insane, or dying of MS. I never mentioned it to any doctor, because it came and went, and seemed minor. (It is in fact Bell’s Palsy, which is very common with Lyme.) An early instance of my body “misbehaving” (as I initially wrote here, but never explicated): my body jerking awake, when in fact I was already awake, quietly watching TV from my couch (a myoclonic jerk—harmless itself, but a common misfire of the central nervous system from tick-borne infections). The thyroid problems, the persistent, recurrent case of mono. These symptoms and more initially tended to occur sequentially rather than simultaneously, always easily mistaken for something else, or nothing at all. As the memories trickled in, the dominoes started snapping into line as if mechanized, and with the mere whisper of a blown breath, cascaded down in perfect order.

I did not know how much I needed this memory. But I did. I am as surprised as anyone that this tiny memory matters so much. But it does. This memory takes a small, but chaotic room at the back of my head that was filled with skeptical, niggling clutter, and sweeps it clean. This tiny memory is significant because it gives me permission to be sick. Which then gives me permission to just stop, step back from life, take the time I need to get treatment, and ultimately, get better. This memory provides vindication. Vindication of the truth, even beyond the “controversial” labs that showed antibodies; beyond the Lyme-literate medical doctors who said this was a slam dunk. This memory is my vindication for pestering the ten+ doctors for whom my presentation (i.e., without a known tick bite) was not part of their paradigm, and therefore not even worthy of curiosity, much less investigation; vindication that the four+ CDC-approved Lyme tests I’d had that all came up negative over these years definitely missed something.

This vindication is not about being right. Yes, I know I like to be right, but this particular vindication is about having my private, personal, I-know-it-in-my-bones-but-can’t-prove-it experience validated. I know I’m supposed to be beyond external validation, but when I am incapable of answering things for myself, literally unqualified, and can’t get answers out of the people who are supposed to be qualified, it is simply an enormous relief to know that all I experienced was very real indeed. My grip on reality has never been especially loose, but among the many things this plague does, is gaslight you.

Despair happens when you are at the mercy of forces that you can neither control nor comprehend. Comprehension contains those forces. At its darkest, this illness hurtled me through horrors of despair beyond any I’d ever imagined. The despair of not knowing what was wrong with me; the despair of knowing something was killing me; the despair of being alone while not knowing what was killing me; the despair of not knowing if I’d ever find out, and of being terrified of what additional forms it might take. What else would this insidious agent rob me of, in addition to my work, my hobbies, my relationships, my faculties, my money, my reputation, my identity, and my life-force? As I’ve already enumerated in this blog, I’d been forced to surrender so many things, so many plans, so many opportunities. Even the music in my head went dead. Truly—not melody nor earworm was to be found for many, many, many a moon. Was there anything left? Eventually, I surrendered even hope, because it was only ever answered by more despair.

So it is that this little flash of a memory transforms what was a menacing, gaseous cloud, which permeated my life from all sorts of unseen angles, and crept in to poison and corrode every cranny of my life. This memory provides a point of origin, which not only implies both trajectory and point of completion, but more importantly, gives the whole of that cloud borders, shape, containment. With the mysterious gas cloud fully contained, I can begin to see past its edges. I can zoom out and take in the whole expandable frame, of which the cloud is only a part. Within the same visual field, I can now see blue sky beyond and around the cloud. And that field of blue sky creates and opens anew a whole forgotten realm: possibility. It invites back possibility, which is the opposite of despair.


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