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Setback

No sooner do I open my big mouth(/blog) and assert that I’m roughly eighty-percent recovered, then BLAMMO!—back to the starting line. Through a combination of circumstances, I managed to get myself hurtled backwards in time and deep into a crater, from which it’s taken me months to crawl back out. I am not six months better than I was in the spring. Instead, as autumn slowly creeps in over the peaks, I’m only starting to do about as well as I was around New Year’s. On the up-side, while far from normal, around last New Year’s was the best I’d been in three years. (Nota bene: I was not ever yet 80% —that estimate was delusional, if now moot.)

Part of my setback was self-inflicted: I hit a wall with my onerous and seemingly excessive treatment regimen, got fed up, and so cut back. After years of layered but inexplicable illness, plus a full year with my true diagnosis, I had treatment fatigue. So I scaled back my regimen, rationalizing that I was giving my body a needed break from processing all that “help.” Yet the Patience Vampire would still not be slaked. I scheduled an SOS appointment with my doc, during which I enrolled him in trimming my regimen still further. When he asked me, “What do you need?” I blurted out, “I need a fucking break!” Of course, it was not in his power to give me the break I really needed: A break from living in this particular body under these particular conditions. He warily agreed to prune my treatment still further, but told me to keep my next appointment, about a month away.

Within a couple of weeks, I started going downhill. Then, unexpectedly, I went through a personal trauma that stressed me to the hilt, and once the adrenaline subsided, I crashed and crashed hard. It was as if the past 18 months of progress had never happened. I was back to being unable to stay vertical for long, even just sitting up; too sick to have a phone conversation if I also had to accomplish anything else that day (say, a load of laundry, or empty the dishwasher, or grocery shop). By the time I saw my doc again, I was in bad shape. Humbled, chastened, ready for reform, I resumed my full regimen in all its wearisome glory, and finally, fully took in the truth: It doesn’t matter What I Want. What I Want is irrelevant. The only thing that matters is getting well, and the Patience Vampire can go straight back to hell.

Do I want to have some tiny fractional semblance of a life while I get better? Well, sure. But it doesn’t matter. Do I want to be able to go for a stroll around the neighborhood—or even the block—of a pleasant evening? You better believe it! But it does not matter. Do I want to try to date, and believe that even those of us who are compromised deserve affection and companionship? You bet your boots I do! But, guess what—it doesn’t fucking matter! DWS (Dating While Sick) was the worst idea I’ve ever had. Because—sing it with me all together now: It doesn’t matter what I want. All that matters is that I stay the course, remain compliant, and keep vigilantly 100% invested in the lone priority of self-care.

I am not great with authority and authority figures. (Pause for loved ones to go “Duh!”) I bridle at the former, and tend to spar with the latter. I do not like to be told what to do and how to do it. But in this matter, my own body is the authority figure. Not my doctor. Not my pharmacopeia. Rather, it is my own body and the battle for authority over its very self that serves as the ultimate arbiter of my behavior. I may never get rid of every last spirochete that’s burrowed into my bones, but if I can reclaim the balance of power, I should fare pretty well. And toward that ultimate authority I must bow, even when nurturing my health means saying no to just about everything I Want. This is all about deferred reward, which in truth is an act of faith. And save my seemingly incurable-romantic streak, I have not been a creature of faith since adolescence. Not in any conventional ways. But staying this course all boils down to that. Like Indiana Jones in The Last Crusade, I must crucially ask myself: What do I believe?

Setbacks are inevitable, unpredictable, and uncontrollable. Nobody on the path of recovery from any crippling illness or injury ever said, “By golly, that was a goddamned breeze!” Recovering is hard work, and often boring and tedious. But, damn if it doesn’t clarify a person’s priorities. Setbacks give perspective—in case you forgot what the big picture looks like, how the long trajectory goes, which blip is the prize—boy howdy, here’s a reminder! Setbacks help clarify what is possible—both negative and positive. It keeps me humble and on-track to realize how vulnerable I am to life’s ups and downs (I could not have prevented the emotional trauma, for example—shit still happens). But I’d have weathered that storm better had I stuck with the program. It is reassuring to know that with attention and diligence, I can still climb out of that crater (and hopefully stay out). This is no small thing, as I’m told some Lyme patients who crash on the road back are unable to regain their ground. So I am relieved to know I can, but am minding my Ps and Qs like nobody’s business. I intend to never again set myself up so badly. I’m sure I will continue to make mistakes, but fervently hope this particular blunder won’t recur.

The Patience Vampire has had me generally take my lessons harshly and repeatedly. As I regain functional aspects of myself, my instinctive tendency is to mindlessly default to full-bore (i.e., Full-Throttle Riv), even if just in short bursts. And I’ve learned I can not do that; it will burn out my fragile and limited resources in a flash, which will not, alas, be glorious. So I am learning true moderation for perhaps the first time in my life. Mastery is not mine. I think this is among the lessons of a lifetime in this for me. And I know I’m not alone in that.

So as I find myself trying to navigate new paths of moderation and excruciating pacing (heaven help an ever-teetering Libra), I entreat your support, my community, in protecting me from my worst self, my old habits.  Help me keep at bay the Patience Vampire who, not-quite-alive-but-definitely-not-dead, always lurks, ready to step out of the shadows and murmur sweet What I Wants in my ear.

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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.

So here I go reclaiming this space, my only real refuge for creativity, productivity, creating agency for myself. Yes, apparently, we are back to that: Agency. The very thing I was actively seeking to create for myself when I began my driving walkabout five years ago.   Unfettered by harsh limitations—mainly just the ones in my head—I had done something radical by conventional social standards, and even got a little guff for it initially. But claiming agency was the most important thing. The stories of my past had to be plowed beyond, and for once I was fired up to utterly claim my future for my own. Despite having no plan.

I learned long ago that plans are for idiots and the entitled (bless them), and now, fettered by harsh physical limitations, I am struggling to locate a sense of agency while doing something that has been not only not my choice, but has hit me broadside and cut me off (unwillingly) from conventional social standards. How does one begin to re-claim everything one has always taken for granted, yet lost? You know, the ability to walk, breathe freely, talk, sing, jump, skip, flail one’s arms about in wild gesticulation? Never mind travel, work, socialize, explore the world—both the planet and humanity… How can you claim them back, when you never chose to give them up? All of which has led me to the question: What happens if you take the “walk” out of walkabout? What happens when you can not walk anywhere? What happens when you spend insane amounts of time alone, too weak to even converse, too weak to even sit upright for very long? What happens when your thoughts melt into such incoherence that all you can do is watch the same movies on cable in a seemingly endless loop? (One season—winter? summer? who knows?—it was “Eat, Pray, Love” and “The English Patient” for months on end.)

In this society, like it or not, we are what we do. Much has been written on this topic elsewhere, much of it rather brutal in its honesty, and since this is my blog, I’m not required to cite references or footnotes. But it is a brutal truth I’ve been staring at a lot these last few years. We all know it, whether we like it or not.  And, especially if I’m not to identify with my illness, if I don’t do anything, then who, and what, am I?  If I do nothing, I officially don’t exist. Except, if that is true, then who is this person, in this mess of a body, suffering so mightily? Am I the proverbial tree, taken out of the forest, where I can not functionally make a sound? If I fall outside the forest, what then? Sound? No sound? Tree/not tree? Yes, it’s crazy-making. That is rather my point.

When I first moved here, I used to gaze from every possible vantage at the Flatirons (Boulder’s emblematic massive rock formations), and joke to people, “See that giant question mark hanging over the Flatirons? That’s my future!” It was a future I couldn’t see at all, and I used to wonder with rapt curiosity where out in those hills it would all take me, never dreaming it would force me inward. Because it turns out, that is where you go when you take the walk out of the walkabout: You go inside the mind, the heart, and the soul. You go into the very essence of humanity, which is that most permeable and ineffable of named things: The soul, the spirit. Like love, which has yet to be captured, measured, and quantified, yet which even the staunchest physicist would argue exists, the spirit, or soul, the very quintessence of a human life, without which said life is officially extinguished, is also unmeasurable, yet universally acknowledged to actually exist. Yet if we are reduced down to just that little spark, just a fragment of a flame of spirit, unable to act out or upon that soul’s whims, desires, or wishes, does that soul then cease to exist? What, then, is its purpose, its raison d’être? In short, how do I justify my existence in a world that clamors for physical, quantifiable accomplishment?

Much of my psychospiritual reading would respond that the part of me that asks the question, and is aware of that little flame, however tiny, is the indestructible “self.” But I have to respond, in turn, So what? What of it? If I can do nothing, what’s the point? The gurus would say no justification is needed; existence is its own justification. “I think therefore I am” you say? Insufficient!  As a good friend bitterly notes, “Truth is action.”   And as long as I’m alive—however barely—I must abide by the rules of this corporeal world, which leads me back where I started.

Yes, my friends, these are the sorts of questions I have slammed up against as I face the devastating interiority of going on thinkabout. Because that’s where I’ve been compelled to go as my body’s capacities crumbled. Do I have answers? Fuck no! I’ve always said I’m great at asking questions, and utterly suck at answers. If you have answers, I’d love to hear them. (Skip the platitudes, please.) All I know is that despite feeling like I was truly on the brink of disappearing, that my diminishing spark of human essence was on the wane and facing imminent extinction, a) these questions rattled around in my head, plaguing me (thus proving I yet lived), and b) to quote Monty Python, apparently I’m not quite dead yet.

Ever since this ordeal began, I always believed that something was on the other side of it—that, somehow, I was poised to crash over a waterfall (in a good way!), with the “meaning” or message clear on the other side, something that will clarify my purpose, snap the rest of my life into focus. Person after person told me this, or agreed with me when I expressed it, but everyone also told me I’m going to get well, and soon. But each timeframe has been wrong so far. So why would I even believe the rest of the story? I keep waiting to get well, keep waiting to clear that waterfall, for my life to snap into focus, but…I begin to wonder, really? I’m middle-aged! What if this is all there is? What if this is as good as it gets? The new question I’m asking is, if this is as good as it gets, how do I build a life here, within that? How does one build a life on this maybe-80% quicksand that still precludes making plans, keeping one’s word, physical exertion, traveling, or even staying out past 7 o’clock?

Spending the better part of three years lying on the couch, yet unable to actually do much sleeping (day or night), provides ample time for rumination, both fevered and regular. I’ve had a lot of opportunity to come up with, ask, and ponder into near-pulverization all sorts of topics. And maybe finally getting them out of my head, and starting to toss ’em out there, is the only way to stake a claim within my present existence. It feels like a rather pitiful agency, if it’s even that. But it’s gotten way more crowded than usual in my head the last few years, and just as opening the windows in my house today allowed some early spring air to stir into the stagnant winter space, now may be the time to circulate these thoughts beyond the confines of my head, and trust to the alchemy of oxidization.

I started this blog over five years ago, when I was setting out on an adventure into a massive, amorphous unknown. I was restless, and felt at an impasse in my life, yet couldn’t define the nature of my restlessness, nor the exact terms of my existential impasse. I just knew if I didn’t set off on my walkabout, I would sink into a deep depression and wind up squishing my way further into the mire.

This walkabout, which I intended to chronicle forward through these past few years of transition (and have in fact semi-abandoned, semi-completed, despite copious notes and drafts), got first delayed, then put on indefinite hold by the events that ensued. My initial walkabout resulted directly in my move to Colorado—an unexpected change that gave me purpose, joy, and a kind of internal motivation I had not known for years. In 2010, I uprooted myself yet again to start life over as a middle-aged single woman in a small, landlocked town. I hadn’t lived someplace as small or landlocked as Boulder, CO, since my family left Poughkeepsie, NY, when I was eight. I had no idea what my new life would look like, but I knew I was ready for a radical change of lifestyle, surrounded by majestic natural beauty that I’d come to learn I needed as the most basic fuel for my soul.

Leaving my community behind me was harder. It had taken me a good five years to establish a feel of community in Philadelphia, yet here I was, walking away of my own free will less than two years after starting to feel a part of things there. At no other time in my life would some nebulous need for something vague have outweighed my heart’s need for friendship, love, and community. At any other time in my life, my friendships and proximity to family would have been more than enough to hold me someplace. But something had shifted on my walkabout, and I actually needed something beyond human connection for the first time in my life. When people asked me why I was moving, my short answer was simply, “It’s a soul move.” I couldn’t really spell it out more clearly yet. The members of my tribe who really “get” me understood. Others didn’t. But as with hitting the road in 2009, go I must, this I knew.

And so I moved. I had meant for this blog to explore that whole process; the process by which I selected my new home destination, and the process of parting with life on the east coast and moving to a whole different landscape and lifestyle. I have pages and pages of notes, and even several entries mostly written. But life has been full of surprises, and since I didn’t get those finished and published, we are skipping ahead, and I am summarizing here. Today, spontaneously, I made the decision to just jump right back in, because I think (once again) I need to do this to help save myself.

I knew the lifestyle in Boulder was super-active. A town of triathletes, skiers, cyclists, and hikers (and yes, entrepreneurs, students, and professors), with typically sunny, dry weather (even in the winter), it’s an outdoorsy town where all the kids seem to always go out to play. As a relatively slothful adult who apparently lacks the gene that affords lucky souls the runner’s high (yes, there is a gene for that, and I didn’t get it), I was honestly hoping the peer pressure would whip me into real shape for the first time since my 20s. I was stoked to become strong, and render myself ripped and unrecognizable to my friends back east in only a year or two. Having taken more than a year off of men and dating in the wake of my last big breakup, I figured I’d wait until I moved to start dating again, and was really looking forward to taking the boys of Boulder by storm.

I moved in August 2010, on the heels of a raucous and riotous summer of near-collegiate-style partying with my Philly Chica Posse. We knew I was leaving, so we ate, drank, and made merry. I culled my possessions, weeded out my files and papers, and burned five bonfires’ worth of papers that needed shredding. I hired packers, and a day ahead of the moving truck, two hulking men came to my door, and in seven hours boxed up my entire life. One of my girlfriends drove cross-country with me, and she and two other friends seemingly randomly, serendipitously, graced my threshold for those first days I lived in Boulder. Altogether, it was an auspicious and joyous new beginning.

The summer of 2010 clung late, and we were wearing sandals through the fall. While I struggled to acclimate to the altitude, I nonetheless slowly worked on building my physical strength and endurance by walking more, cycling around the bike paths, and attempting to hike—little by little—the easiest of these daunting mountain trails. I joined the local Rec Center, found a decent bra and shoes (needed in that order), and was actually attempting running for the first time in my life. I was singing with the Colorado Symphony Chorus, training as a hospice volunteer, and reading for a broadcast service for the blind, all as exploration of possible new career avenues, and all as part of my overall goal of this move: to live a saner, healthier, more meaningful life. Singing was the only holdover from my previous lives that gave me a sense of continuity in this foreign place. I built a new and improved online-dating profile, and started meeting the good men of Colorado. That first year was full of question marks, exploration, wonder, and fun. Friends and family came through and visited me in my new life. But as the spring came along, I was starting to feel a little worn out. I figured that I’d been living pretty hard, and that sort of full-throttle living was not sustainable for a woman in her mid-forties. As if to slow me down a tad, one of my experiments—dating a guy who was very different from me—smacked me upside the head, and heart, and I was smarting by the time that next summer arrived.

The summer of 2011 saw me spending several weeks on the east coast singing, and visiting family and friends. I was exhausted, but plowed through those hot and humid weeks. I just wanted to go home to Colorado and rest. After more friends and family visited me around Labor Day, I finally got to start relaxing, winding down to a slower pace, and back to getting grounded, figuring out my next steps, including when and how I was going to finally find some work. Alas, all my plans were foiled one day, when at the end of a workout, I was hauled off from the gym in an ambulance with my heart going more than twice the normal speed. Four days and three ER visits later, I was thrown into surgery to correct an arrhythmia in my heart, which had appeared out of nowhere. This inaugurated the seemingly sudden unraveling of my health. When I started this blog in 2009, I’d been feeling “not right,” and for quite some time. Without going into medical detail, that got better, but never fully, and without any real diagnosis, despite consulting multiple doctors in Philly. But in the fall of 2011, I became a heart patient, and spent the next months recovering from the surgery. In January, I finally just crashed—I got really, really sick, and simply could not get well.

The last three years have been the most terrifying, demoralizing, and often loneliest of my life. I spent many months watching my health fail, my life-force ebb, the scaffolding of my life fall away as I faltered on every commitment in my life, even as no doctors could tell me what was wrong. I knew I was literally dying, but didn’t know why. I was alone 95% of the time. Only a year into this new life, this new place, when I crashed, I had minimal community—just a handful of friends who knew me neither long nor well; but I was grateful to have them, and in this small town, have people so accessible. Still, the abject terror that strikes alone in your bed at 2:AM, when you know you are dying, and are too sick and weak and incoherent to hold even a 5-minute phone conversation, too weak to stand up at the counter and put food in your kitten’s dish—that is the terror that drives people to mad and desperate acts. I began to consider an off-ramp. I’d missed so much. I’d missed singing at more prestigious music festivals. I’d missed my mom’s 75th birthday. I’d missed my 30-year high school reunion. And I couldn’t get well; in fact, seemed to only get sicker.  I had lost my normal life, my body and mind’s standard capacities, and had thoroughly lost my sense of humor.  With no answers and dimming hope, this was not a life worth living.

Finally, it dawned on me that if I was willing to off myself, I should also be willing to first throw every dollar I could muster at finding answers and solutions. That off-ramp was a one-way exit, and would still be available to me later if needed. But why not first blow through every resource I could scrape up to try to save my life? And so it happened that I found an expensive, non-insurance-taking, holistic MD who has quite literally saved my life. In my first several-hundred-dollar appointment, she asked questions nobody had asked before, mentioned tests nobody else had bothered to name, much less perform. Amazed, I just said “GO!” and we began to unravel the mysteries of my collapsed health. That was the fall of 2012. With each new piece of information and treatment undertaken, I would start to make progress, then inevitably have some sort of setback. It took until January of 2014 to get the full picture, with multiple diagnoses piling up along the way, all of them also accurate. And all the while, I’ve had to sit (mostly alone) in the sidelines in this gorgeous place I’m living, watching all the teeming life around me, unable to participate, and uncertain when or if I will ever be able to re-join in.

I was blessed to have some respite in the loneliness, having had a year in a relationship with someone who was accommodating about my health, and patient, loving, and attentive with me. However, when that relationship abruptly ended for external reasons, I was plunged into isolation and fear anew, this time with a well and truly broken heart to boot. It was on the heels of this breakup that I got the answers that unlocked the puzzle of my health. Already brimming with grief, I learned in early 2014 that the reason I’d been sick forever and couldn’t get well was because underneath all the other problems (a complex constellation affecting multiple bodily systems), I had long-standing, untreated Lyme disease (known outside the U.S. as borrelia), plus two other bonus (read “nasty“) tick-borne infections. This is not a jolly diagnosis, and some people don’t recover. I was relieved, yet devastated. Treatment of these infections is often as hard on the patient as the diseases. Some of these infections have no known successful treatment, especially when the infection is old. I was devastated, alone, and terrified again, but I had answers at last, which enabled me to begin to chart a course ahead of me.

I spent 2014 clawing my way back to life, putting one paw in front of the other, and focusing on self-care and recovery as my only priority. Displaced by the flood of 2013, I moved all at the same time as the breakup and diagnosis, but finally had a healthy, safe, new haven to start in afresh and call home. The prevailing theme of all last year for me has proven to be “resilience,” a skill and trait I have been late to cultivate and honor in myself. Most of what I’ve known since moving to Colorado has been terror, loneliness, illness, and heartbreak. This illness has been the hardest and most humbling experience in what has already been a sufficiently hard and humbling life. And yet, I continued to draw breath.

It’s not a straight line, this recovery, and it’s an excruciatingly long road. I still can’t make plans day-to-day and know I’ll keep them. I’m still weak, and get fatigued easily, or am overly-tired to start with. My primary symptom and limitation throughout has been grossly insufficient energy.  How I feel, and what I’m able to do, varies daily, if not hourly. My treatment regimen is excessive to the point of ridiculous, onerous for one person to manage, and renders my life entirely non-portable for the visible future. Yet against my nature, I have been the most compliant patient ever, and compelled, by force of waiting, to be patient. And even so, there is nothing I can do to accelerate this process; my only power is to not hinder it.

And now it’s March of 2015. Five years ago this month, I was sub-letting an apartment here in Boulder, on the scouting mission that would decide whether I’d move here or someplace else entirely. The spring thaw is finally arrived in these foothills, and the sun is shining on all that melting snow. I have a plethora of coffeeshops to frequent and wifi in (if I can stop spilling beverages on my laptop). I have a handful of local friends, who seem to ebb and flow in terms of accessibility, but who always come through when there’s an SOS, or free food and drink. My mom has kept coming to visit, and made sure to throw a party (which I was just barely able to stay vertical through) for my big birthday this past fall. Like the fool I am, I tried dating again, and seem to be caught in a wash-rinse-repeat cycle there (ouch).

I was lucky to get on the schedule of the big Lyme doc in town a year ago, and am now roughly 80% recovered, which means at my best, I have about 80% of the capacities of a sedentary, severely deconditioned, but otherwise healthy person; but I seem stuck (and hope I am not). I feel pretty bloody stuck across the board. There is nothing important in my life I have any control over—I keep getting my heart broken, I keep hitting frustration and setbacks, and I can’t will myself well.  Some days are better, some days are worse, and I never get to know which will be which ahead of time.  But I did get my brain back last summer, and now I’m recovered just enough to start complaining, which I know tends to be a good (if annoying) sign. I’m fed up with the status quo, yet can not reasonably commit to any new path, course of events, or commitments. So I’m sad, and frustrated, and existentially mired yet again. But last night a close friend implored me to push back against the existential despair by creating something, anything. And so, despite all my failures and disappointments regarding this blog, I decided she was right, and so here I go, plunging back in. I don’t know quite why I’m writing, only that I don’t know what else to do.

So here I am, still neither ripped nor strong, still a slightly pudgy girl in Boulder. I was well aware that I didn’t know what life would hold for me when I made this move. But I never could have dreamt it would be anything close to this. And despite everything, all the loneliness, all the despair, all the grief, I have never questioned whether or not I’m in the right place, whether I made the right choice in moving here. That answer has remained clear and obvious. In every way, this place has saved my life, even as it tantalizes me with visions all around of a life I can’t yet lead.

I interrupt this long-neglected narrative to (temporarily) stand in the present.   I have reams of notes to fill in the intervening walkaboutishness, and fully intend to do so, because I think there’s some good stuff there; but today’s Facebook post, and the unexpected responses I received, prompted me to hurtle forward in time yet again.  Sometimes narratives, like life, move like lurching train cars.  So, if you prefer to remain in suspense about what happened after that last entry, you’ll want to skip this one and come back to it later; otherwise, buckle up, and let’s roll.

Three years ago today, I was winding up my Boulder reconnaissance mission, having spent three weeks in a sublet, yet unaware I would move into that same neighborhood just five months later.  Two years ago today, I was delving into a life I had never before imagined, doing all sorts of things I’d never expected, unaware that a few of them would turn on me and kick my ass.  Just one year ago, I was recovering from months of illness, unaware that I would soon relapse severely, and spend the next year-plus struggling to return to health.  March is a season of extremes and unknowns, unpredictability and uncertainty.  The only thing I know about March, is to not trust anything I think I know.  Except to surrender to the wind, and know when to come in out of it.

By now, most of you know I landed in Boulder, Colorado, ferociously eager to explore new terrain and a complete change of lifestyle.  Many of you know that after just a year here, I began having health problems – starting (it seemed) with my heart.  This won’t be the blog entry where I go into the details of my health – that will keep for another day.  There are huge lessons to be shared there, but right now, I want to contemplate the shiftiness of this season, the unsteadiness that is recovery, the winds of change, the unpredictability March keeps blowing at my feet.

After canceling every commitment and obligation I’ve had for well over a year, I recently was able – with much assistance, support, and planning – to make it to New York for a family wedding.  Missing this long-awaited celebration would have devastated me.  I already have missed so many things through this illness:  my Mom’s 75th birthday, singing Mozart with a favorite conductor in Scotland, singing Mahler’s 8th at the Aspen Music Festival, attending my 30-year high-school reunion…and those were just the biggies.  I hadn’t seen most of my family in nearly two years, and few of them really knew what had been going on with me.  To most, I’d had some vague health problems, and had seemingly fallen off the face of the Earth.  So despite my personal loathing of New York and its environs, despite my knowledge that placing my sensitive system in that toxic environment would be risky at best, I knew I had to make that wedding.  Even, I told my cousin (the groom), if it meant being rolled in via wheelchair.  Make it I did – alas, not without one humiliating wheelchair ride (across LaGuardia Airport the night we arrived).  But five nights later, mission accomplished, I was back in Colorado, having achieved my key goals of making it through both the rehearsal dinner and wedding without leaving early.  I have to admit that when I could not join in the traditional dancing as the bride and groom entered the reception, I burst into tears.  Still, my loved ones reminded me:  I was there, and that alone was a victory.

New York was hard.  Everything was planned around protecting my energy, preserving it for the big events (including the travel days), and keeping the city’s invasiveness at bay.  We arrived in a snowstorm, and departed amidst a rainstorm, and while the intervening days offered the ease of early spring’s loveliness, I spent a lot of time having to just stay in and rest.  But I did get to plug back into my family, which was critically important after so much isolation.  It was hard, but so worth it.  And then, the most amazing thing happened:  After returning to Colorado, expecting to be felled, clocked, and clobbered for days after the return travels, instead I seemed to magically turn a corner.  It felt like yet another layer of the film of fatigue and exhaustion and illness just peeled away.  Practically overnight.  At first, I didn’t say anything, not wanting to jinx it.  But everyone who saw me in the past week noticed it, and commented.  I had suspected that March might be the turning point for me in my recovery, but it was just a hunch. I had no solid nor medical reason to think that.  But there I was, starting to get a little spring in my step, another piece of my brain back (yes, the one that makes it possible to write again), and the energy to interact and function one level closer to my norm.

So here I am, back in my chosen home, starting, just beginning, to feel, believe for the first time, that I might truly be able to get well again – not just better, but all the way well.  But everything feels so odd – even this positive change feels like quicksand.  And tonight, as I write this, I am back to feeling extremely tired again.  Everyone tells me recovery is never a straight line, and to expect setbacks, plateaus, and yes, even sudden plunges forward.  I don’t know where I am anymore, I don’t know what feelings to trust, or even what my senses are telling me; perhaps because they’ve been so compromised for so long.  I can’t remember what normal might feel like.  But March, oh, March, appears to be a month of the unexpected, the unenvisioned.  March brings feelings of change, without any clear sense of what those changes might actually be, or what they will yield, good or ill. Airy, unsolid, mercurial winds, quixotic weather and perceptions are all around me, blowing through me.

Since I left the ground at DIA two weeks ago, perhaps my energy lifted off the ground with that airplane, and now back on the massive stony foothills, I’m having some trouble getting my grounding again.  I don’t seem to know where I am, what I feel, what to expect.  Finally, with a little help, I remind myself to expect nothing:  I have no further commitments to renege on.  I have nothing left on my schedule to do but heal, and I have enough evidence to know that having patience will be worth it. (Not that I have a choice.)  I need only continue to recover.  But while this blog and my walking about emerged from a sense of restlessness, this current unsettled feeling won’t do in an entirely different way.  I can do nothing about these shifty winds of March – they are beyond my control.  I have to let them blow around me, and do what they will.  I have to find a way to accept wherever they will whisk me, and try not to resent feeling buffeted.

Still, I can drive up my local mountain, sit on my rocks, stare at the sky and space around me, listen to the silence amidst the whispers of the trees.  I can connect back into the solidity of the masses beneath me, breathe in the stillness around me, and notice the coming storms gathering out over the Divide.  And when their winds finally start to kick up and blast at my upturned toes, I can get myself up, take a moment to hug a rock, and head home.

Fast Forward

It is now 2012.  No more back-dating my entries.  But I will pick up where I left off, because I’m a (mostly) linear kinda gal – when it comes to storytelling.  (Call me out on that one later.  We have catching up to do here.)

My efforts to narrate, muse, and post in a dedicated and timely fashion have been upended.  Sofia’s death threw a monkeywrench into what little momentum I had after the Big Drive, and instead sent me grieving and back on the run.  My house was definitely no longer a home, and I had to get the hell back out of there.

A couple of days after Sofie died, I left for Thanksgiving at Mom’s.  My brother and I drove together and stayed nearly a week.  But first, the friend who had been there for me on that agonizing day had returned with me to my little cottage, rushed into the house ahead of me, and immediately begun clearing up all the sick-kitty detritus that littered the house.  Blowing off her own family on short notice, she spent the night with me, took me out of the house to friends, and helped de-kitty the house so that I would not return from the holiday to face such graphic reminders.  Other friends came by over that weekend, paying “shiva visits,” bringing me chocolate, mourning with me, and taking away the remaining cat food, medicines, and such so I would not have to deal with them.  I know wonderful people, but have to admit was taken aback at the kindness and generosity shown to me over the loss of my pet.  Pet people understand.  When you are single and live alone, these creatures take on even greater significance.  She was my child, my confidante, my companion, my solace.  She gave structure to empty days, and comfort to solitary nights.  Sofie was an extraordinary creature, one of the greatest blessings of my life.  (Even non-cat-people found her exceptional and loveable.)  I’d thought she’d make it to 20, but know the time I had with her was a godsend and a gift.  We’d been through much together, and she’d always adapted, growing only more devoted through the years.  I would never have gotten through my divorce without Sofia. Truth is, I don’t know how I’d have survived my marriage without Sofia!  This loss would be a enormous.  My family and friends were exceptionally kind, loving, and supportive during what was, for me, a bittersweet holiday.

After Thanksgiving, my brother returned to his life and children, my existence felt more vacant and purposeless than ever.  I literally had nothing to do, no one to look after, few responsibilities, no agenda, and absolutely no direction.  Except I knew for a fact that despite the wonderful connections and community I had slowly but steadily forged in Philadelphia, I needed to leave.  I didn’t know where I would go, much less when, or how, but knew I required a different environment.  In the past, a sense of community and deep social connections would have been more than enough to hold me someplace – they would, in fact, have kept me there.  But now, for the first time I could recall, relationships were simply not enough.  Which grieved me.  It took me nearly six years to build these ties, and I really thought I was finished starting over.  But 7,000 miles of road had shown me – if nothing else – that my environment is critically important to my sense of clarity and well-being.  And my little cottage in the woods, so cozy and nurturing, so safely sheltering in the years rebuilding after my divorce, had come to feel confining.  The very trees that had canopied me in their height and history now held back the sky, and blocked the flow of fresh air and energy.  The forest – or at least my life within it – had grown stagnant.  Life in Philadelphia was full, but frustrating to navigate.  Just going to the doctor, or servicing the car, or going to the movies, was a time-consuming production.  The traffic and parking and asphalt, and the chronic frenetic energy were corrosive and overwhelming to me.  I knew in my heart – but didn’t want to admit – that I needed less chaos and more wide-open space.

So I booked a timeshare in Los Cabos, Mexico, and arranged to go from there to San Francisco for New Year’s.  I had first gone to Cabo two years earlier, nursing a broken heart following my last big breakup.  I had gone alone, to a place I’d long itched to visit (photos of this place had lured me since my married days and through the divorce, when there were plenty of timeshare points, but no time or money for real vacations).  Several breakups later than intended, I had taken myself there at last, bearing a spanking, empty new journal, and a small stack of self-helpish books.  I went down to reflect, conceiving it as a sort of recovery retreat.  I would ponder, contemplate, take in lessons learned, and “tune in my own radio station” as I liked to put it.  The joke was on me:  I never cracked any of those pages.  The stack remained untouched on the table for nine days.  Instead, I had gotten back down with my inner extrovert, located my latent barfly, practiced my Spanish 14 hours a day, and made a pile of new friends.  I’d gone down with a bleeding heart and returned with a smile on my face.  A quick trip back the next year solidified my friendships, and this place in my heart.  Closer to the equator, even at the Solstice the days were longer, the breezes gentler, and the sky hanging over the sea turned pink every night.  I would go back and nurse my bleeding heart once again, staying even longer than before.

But I still couldn’t stand to face the new year in the northeast.  So when an old friend from grad school, who had reconnected with me through Facebook, invited me to stay with her and her husband in San Francisco for a week over New Year’s, I knew I had a plan.  Three weeks over the darkest days of the year were covered, then, and the light would be returning, minute by minute, by the time I’d return to Philly.  I hadn’t been back to San Francisco since before my marriage ended.  I had loved it there, and during my marital years we shuttled back and forth regularly.  But since the split, it had sort of become “his” turf (his parents and kids were there), and I had evaded it like the third rail it might be.  Now it was time to discharge that voltage.  I had found and loved San Francisco well before I met my husband.  I’d been happier there than anywhere else in my adult life, and  I had long-neglected friendships that seemed willing to welcome me back.  It was time to return, revisit, and reclaim a piece of my history.

©2012. All rights reserved.

Zenmaster

I’ve now been back from the Big Drive just about a week, and am getting more lessons in wanting and letting go, being here now, and gratitude.

My sweet Sofia is gravely ill, and I’m not sure how long she has.  I came back from my walkabout not wanting to be here, wanting to be back out west but for Sofie and my guilt over leaving her for so long.  I’d said on arrival that she was the only thing that made the house a home.  Little did I know how true that was, and how sick she already was. Not a week later, I learn she was already well into renal failure. Now I’ve had to put her in the hospital. I came home from the hospital knowing I’d done the right thing, but going home to an empty house, even though she’s alive and getting treated, was excruciating.  The house truly is not a home. Wracked with guilt over my self-indulgent journey that left her to decline so rapidly, I am devastated, and am sparing no energy nor credit card to save her.  While the doctors assure me that end-stage renal failure does not occur in 23 days, I am stricken at having left her for these last few weeks.  Oh, the lessons in wanting.  Right now, all I want is for her to be fine. And that’s not going to happen.  I don’t know what will happen, but I know she’s not going to be fine – that’s the best-case scenario.

Re-entry swept aside, the ensuing days and weeks have become a blur of veterinarians, veterinary hospital visits, increasingly agonizing decisions about increasingly risky and invasive tests.  My seemingly suddenly-sprung-up community of friends work in rotations, accompanying me to the vet hospital, just in case this time will require the big decision.  I want to be able to concentrate on something else, but find it nearly impossible.  I’m trying to allow, allow, allow; know resistance is futile, all that.  But boy, if I wanted to be elsewhere when I got back, Sofie needed me to be here now.  She’s my Zenmaster. She’s in the hospital, which is a place she does not want to be, but it’s her best chance at turning it around and having more time, and so she’s there.  And she seems to be adapting; she sure as hell doesn’t like it, but she’s adapting.  My little yoga teacher.

Twice Sofia comes home, home to me poking her with a needle several times a day, giving her pills all day long, spoon-feeding her on the sofa (where she has decided to camp out).  When home, she rarely sleeps with me anymore, staying on the couch, but she struggles to rally, be with me, offer me her sunshiney, spunky, affectionate self.  Twice she goes back to the hospital for kitty dialysis, responding so well they can only send her back home and see how she does.  The last time she comes home, the transformation is extraordinary, giving great reason for optimism.  It wouldn’t be her previous low-maintenance life – she would have to receive subcutaneous fluids daily, and pills all day long.  I would be poking and prodding her for the remainder of her life, and my traveling days would be curtailed.  But if she could tolerate it, we could have each other.  They send her home with me, with instructions to return in four or five days for a re-check.

On the return visit, accompanied by a friend (who refuses to be identified here, even by pseudonym), we go in hoping for the best.  We drop off Sofie, go for coffee, and return a little while later for test results.  The news is dismal:  her numbers had not crept up in the last few days – they had skyrocketed higher than ever.  She could not be sicker.  Her seeming good cheer was all an act, all efforts to please me, stay with me, be here with me.  As soon as I realize we are at the end of the road, I fall apart.  I had been vigilant about not crying in front of her, staying calm and centered and hopeful to support her mood and well-being.  But as soon as my façade collapses, Sofie’s does, too.  She lay down in her carrier – someplace she never wanted to stay – and went chin-down on her paws.  And looked at me as if to say, finally, “Mommy, I really don’t feel good.”  She looked almost relieved to tell the truth.

The hospital had previously told me they could euthanize at home, which was my strong preference, as Sofia loathed the hospital and being around the other animals.  It was the least I could do for her, give her lasting peace in comfort and peace.  But here we were at the final hour, only to learn that because it was now Saturday, they didn’t have the staff until Monday to send someone out.  I gasped in horror, sobbed still more.  Take her home with an axe over her head for 48 hours, waiting for a date with Death?  It was too horrible to consider.  The doctor excused herself while I sobbed on my friend, beseeching advice.  The doctor returned, saying a tech had offered to come out to my house the next afternoon, even though it was his day off.  It was immensely kind, and I wanted to meet the kindness extended, but even 24 hours of this doom seemed too agonizing to endure.  We would just be miserable.  I saw myself just sobbing over my little fluffball all night.  It seemed unbearable.  I turned to my friend, who had known what she might be getting into coming with me that day, and was ready to step up.  The doctor wouldn’t choose for me.  I was paralyzed myself, hating the options.  I turned my gushing eyes to my friend.  She knew what she had to do, and so, she decided.  She chose what was best for all of us, and I utterly trusted she would be right.  I felt awful putting her in that position, and my gratitude to her for coming through will never end.  And so we told the doctor yes, OK, it’s time.

They told me what to expect, that she would first literally fall asleep, then feel nothing, in two distinct stages, from two separate drugs. The staff left us alone, but I needed so little time with her  at this point.  I had already told her everything I had to tell her, given her everything I’d ever had to give her.  Sofie seemed to understand.  When the staff returned, Sofie climbed off the exam table into my lap on the adjacent chair, I thought en route to an escape.  But instead, she just lay down in my lap, where she remained, and with her little forehead pressed into the crook of my elbow, entered a peaceful slumber, and slipped away.

Now my girl Sofia is gone, my little familiar of these last twelve-and-a-half years. I put her to sleep on Saturday, November 21, 2009, after twelve days and thousands of dollars.  Sunday was my shiva day:  I had five visitors, and nearly a dozen phone calls, coming from all over.  People have been wonderful, taking this grief of mine very seriously.  I must’ve cried a gallon on Sunday.  Maybe, just maybe, I can now start to recover, now that the uncertainty is closed.  With resolution, there are only tears, and grief, and missing her.  I wrote to my ex-husband, and his kids (they all had loved her, too), and got a kind response from the ex.

Sunday night my brother was here, and while he was getting ready to go home, I felt this powerful, powerful impulse to start lighting candles.  I have all these candles in the house, but hadn’t lit them in a long time.  Yet here I was walking around compulsively lighting candles.  Stuart saw me doing this, and said in his offhand, dry way, “I prefer to curse the darkness myself.”  It was hilarious. And I laughed.  It was not irreverent, it was Jewish humor at its best.  My brother was there with me in my grief, and he, too, had loved Sofie.  Knowing me well, he gave me a glimmer of laughter through my tears.   Later that night, I was talking to my oldest friend, Laney, and told her about feeling impelled to light these candles.  Without hesitating, she said, “That’s what we do when someone dies.”  I guess so.  Maybe there’s something about the flame…it looks like it’s alive.  Now the only living thing in my house besides me when I’m there, is an orchid I’d been given as a housegift.  Which I’d been forced to stash in the only place that’s a combination of where it could get enough light, and where Sofie was least likely to eat it.  I have no plants because Sofie ate them all.

And so, this is the first time in almost 15 years that I will be living without another soul in the house.  Heaven knows I’ve done it before, but it’s been a long time.  Sofia let me off the hook for going away over Thanksgiving; Stuart’s coming back tonight, and tomorrow morning we go to Cleveland for Thanksgiving together. Because my angelic friend stayed with me the night before, last night was the only night I will have to pass alone in the house for a long time.  And I made it through because I was so cried out.  Now I am packing again.  And thankful I don’t expect to spend a lot of time in Philadelphia in the coming months.

©2011. All rights reserved.
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