Archive for September, 2015


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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