[Last week’s original posting was missing content. This post is complete. New material from last week begins with the paragraph “Trials change us”. I apologize for not seeing this sooner.]
Not quite a year ago I got these pills. With rare misses, I have taken them, twice a day, all this time. I took the last one Monday, in the morning, in the rush to get to work. But this was the last one, and I honored it with pause. We have been on a road together, me and these pills.
On the last day of summer 1983, I was swimming in our backyard pool, thrashing and splashing and over-dramatizing whatever antics eighth-graders-to-be do the day before school. It was a Sunday laid flat with Texas summer, strong light harsh with the endless buzz of dog-day cicadas. The Atari 2600 had lost its shine, but I would have taken another boring week–endless boring weeks–of the same blocky games to the real brick, noise and rushed order of junior high. I looked up at the blue sky, thunderheads budding, the oak leaves a dark frazzled green. I remember that last day before school as if holding a frayed extension cord, just short of getting shocked but feeling the sizzle spread out of my hand, into my body, into the air, up into the blue sky and the inevitable lightning there.
The scratch in my throat came first, at dinner feeling hot as if August had come within. By bedtime I remember my hands shaking. I remember not sleeping as the worst sort of night, flitting between black smeary dreams, pulling the sheet up and throwing it off, staring at the ceiling, knowing I had to go to school, go to sleep, school.
Even in my early teens my father rose painfully early, so when I was up before him vomiting, he didn’t question my faking. I stayed home, in the bathroom, on the floor. It was just too hard to get to the bed only to fumble back to the bathroom again.
My pediatrician, a tall, affable man who could’ve played basketball or done TV weather, needed only a moment. Yup, mono. You’re one sick kid. Nothing to do but wait it out, his lack of concern over my inability to eat, high fever and constant vomiting assurance this was just mono. Colorful posters of fish and birds from the Fort Worth Zoo covered the exam room’s prototypical Seventies paneling, and through the walls a small child occasionally screamed.
I missed the first two weeks of the eighth grade. Homework delivered via next door classmate I did on the bathroom floor, taking all next day with barf breaks and naps. After the first week my parents had a grave conversation with me about homeschooling. I felt a different sick clawing in my stomach, the anxiety of being bad, cheating the system.
Eighth grade was difficult enough, but with my bookbag I also lugged a persistent fatigue, nausea, flashes of fever. Adrenaline alone pushed me through it all. I had to claw up algebra I didn’t understand, sidestep the inscrutable requirements of our college-accelerated English teacher, deviation from which resulted in scorn and rage. Band required lessons and “chair tests” for hierarchy. At night I sweat myself to sleep, Bill Cosby through headphones tamping down anxiety.
That persistent fatigue, nausea, sweats, and fevers were not normal never occurred to me. I had missed too much school already. I remember seeing the town doctor for one complaint of fatigue. A young woman substituting for the old man guessed it might be allergies. That is the precise moment I lost my youthful faith in doctors.
High school I fought to stay awake in afternoon classes and stay focused with the band, up in the stands at football games. Elaborate notes and recopying were necessary to remember anything. Fridays I came home exhausted, arms leaden, ready to watch TV and go to bed like a retiree. College it came and went, though consistently worse in the summers. I was always glad the years Fort Worth had a winter.
Over the years it gradually got better. My ex wife noted fatigue has been my constant complaint since she’d known me. Moving to Washington in 1997 seemed to help, though exercise made it worse.
Then the the big sick overshadowed everything, fatigue a whole new ball game. Most of my thirties passed and I got over that too.
June 2012 my cubemate brought in sniffles and a cough. Despite my handfuls of Vitamin C and zinc cold lozenges, it crawled in my throat and ears, set up in my windpipe, and snaked its filthy leaden tentacles through my spine, radiating everywhere from there. Ten minute tasks could take an hour. As proof of healing, I’d forgotten what this was like.
My tough-as-nails doctor focused her woo-woo science skills and tested me for Epstein Barr virus (EBV). This had been done at points in my past, but this time the test screamed out positive. She suggested supplements. I’d tried them before and was unimpressed.
Trials change us. Ten years ago, crushed by fear and desperation, I went to doctors, searched the internet the way we did then, found this and that. I was afraid and simultaneously driven–a terror pushing me more than hopelessness or immobilizing fear. Then the tough-as-nails doctor and I fumbled, worked through her standard retinue of candida and thyroid problems. Nothing really improved but I gained someone willing to stick it out with me.
A year ago, those trials now in the past, some focused googling turned up a doctor who had figured it out. It all clicked: the elevated test, how I felt, all the history. I met with my doctor a few days before leaving for New York, getting the pills the day before takeoff.
The pills caused an immediate worsening: every movement as through amber, head spinning, New York’s steamy August pulling me into the street. Doctor’s advice is to rest as much as possible, the crushing fatigue a good sign, but I drew on that strength from ten years ago and pushed on. It’s New York! I helped my friend put on his show, walked the museums, walked up to the little red lighthouse beneath the great grey bridge. (I even walked the grey bridge to New Jersey, which was the different planet I remember.) It was tough but I was determined.
Everything went wrong when I got back, but I kept at the pills. I took them the day I knew I would have to say goodbye to Koshi, my cat friend who had cared for me as much me her the past two years. I took them each day I went to interview for jobs I didn’t want but I felt I needed for vet bills and to just have somewhere to go. I took them through a Thanksgiving in Texas, an acting and writing class that both energized and terrified me, New Year’s fireworks at the Space Needle, the start of a new job that filled me with outsized fear and dread. That I started them at the same time as I worked off antidepressants, and that the trouble began then, did not occur to me until much later.
Now, fatigue–at least what I can now feel as “EBV fatigue”–is gone. The occasional mouth sores and pain in my joints is gone, as is the subclinical fever. How much was Lyme and how much this other virus? I don’t know. But a recent re-check found the EBV had gone back to sleep. Should I keep taking the pills? Let me check your chart. I don’t hear back. I don’t get the last refill.
We are all on journeys. The first ones are handed to us, cut out and pre-defined, a grade at a time. We learn how to handle these, the designers intending for us to learn confidence (though perhaps as an afterthought). We split off when the last bell rings on other journeys, some planned, but most diverging, all of us caught up in the warm, sandy delta leading to the infinite ocean. Our journeys diverge, or cross, or collide. We gather barnacles we cannot dislodge, or lose everything and sail up into the sky. But the wind is always blowing and we are always going.
Most of us row into the future. I was told this–it’s too wise and sublime to come from me. It’s easy to put our backs into it, rowing to get away from the past that is all we see. Far more terrifying to turn around and unfurl the sail, and look out from the front as the wind carries us. If you learned this early, you are lucky, lucky, lucky.
The last Monday morning with the last blue pill, we are in a middle place, able to row or sail. The best pills can promise is to release us from the oarlocks, let us turn around, and look ahead. I realize now my moment’s pause is thanking the pill. It did everything it could to unbind the sail. The work of raising it is always ours.
[amended 7/14/13 — original entry cut off]