Re-entering the village

I used the word ‘cusp’ when I actually meant ‘tail’. The meeting droned on, no one appearing the wiser, though who can really glean how much attention was being paid by the screen of harried faces as we rolled into late afternoon on a Tuesday. I made a slight mess of words again that evening but this time it was more hide and seek than opposite day. In bed, I checked my health stats with nothing of note. Minutes later, I tucked my book mark just two pages further into the thick middle of Great Circle and fell asleep.

Brain fog hasn’t been a hallmark of my post Covid experience but it has made an appearance, stealthily, over the last four years of what I now understand to be peri-menopause. That my fifties have suddenly been subsumed by the language of the languishing- pause, post, long, chronic- irks me. I envisioned it all so differently. Which at this point has become a dull trope, mostly to me, this gap between want and have, so I’ll spare us the long-winded rant, but still, the irk. Yesterday on a hike with Heath, I tried to paint the irk as a more rosy force; the irk is also the push, the nag that spurs me to hit the trail and hike the three miles fully knowing that it may end in an uptick in pain. If I weren’t so irked I wouldn’t blitz with such frequency, and though my body may feel a bit more at ease by day’s end, my world would continue to shrink.

It’s been five months since I last wrote and three months since I passed through the one-year mark of living with post-Covid syndrome which, technically, now categorizes me as a person living with chronic illness. I’ve stayed away from the page as I traversed these narrows, too unwilling to inhabit a voice until I made better sense of who that voice represents. To claim an identity crisis is entirely credible in this passage and I can’t truthfully say that I’ve got it all sorted. I do know that I’ve slipped into a more integrated way of living alongside the symptoms. Too, my notion of ‘time passed’ feels increasingly irrelevant. I ignore the studies showing that ‘most’ post Covid patients recover within a year and also the ones claiming that ‘most’ don’t fully recover at all because there you have it, the data also hasn’t really found it’s voice as we, the vanguard, soldier on, each of us a slight permutation of this grizzly outcome.

In July, we rented a small, modern cabin on the Blue Hill peninsula of Maine and spent a week pressure testing the idea of vacation. June had worn me out, an apex of grief from the sudden passing of a friend, the anniversary of my falling ill and the audacious bloom of summer energy beckoning me to play in a world no longer fit for purpose. I remember saying very little on our drive through the White mountains as we tuned into glitchy speakers and a narrator whose upstart farming stories could’ve been our own. Somewhere in Western Maine, the familiar ratcheting from rib to rib loosened and by the time we pulled into the local co-op just miles from our destination, I felt a sense of normalcy take hold. I’ve heard this described by others living in similar states of being, that an acute break in routine can sometimes mask the chronic condition. And I’ve experienced it for short bursts. But this instance of almost wellness stuck with me for the better part of that week. When it dissipated, I slumped. But it never disappeared to the point of needing much more than an afternoon nap to revive and once again relish in it’s temporal glory.

This glory, this almost wellness, is a terribly challenging state to accurately describe. It is also a boondoggle to maintain. There are no cairns to reassure you of the trail because the trail hasn’t been plotted. Psychologically, it’s nothing short of a mind frizzle because you can sometimes do the things you’d like but often with less zeal and then a hefty measure of bodily refusal that comes on like a shady surprise. My therapist tried to liken it to rapid aging but I don’t find the corollary that apt. Part of me can punk around like a super fit middle-aged jock while other parts feel like they’re on the brink of total malfunction. In the morning, I may feel almost free of any reminder but by 2 p.m., I bear the weight of an invisible rhino sitting squarely on my chest. If I lie down and do some breath work or meditation, I can sometimes finagle that rhino into moving along or at least become a lesser version of itself, perhaps morphing into a pig or a large dog, but the potential of its presence is like a perennial haunting.

I’ve heard this phase of living with chronic illness described as ‘reentering the village’. Your capacity has increased to the point of being able to do more but you’re not yet- and may never fully be- a free citizen of the world. With post acute Covid syndrome, this phase takes on a more sinister vibe as the village still surges with the very thing that landed you on the outskirts and the villagers are predominantly oblivious to your pain. To navigate your way back into the village is to willingly engage in a series of experiments, some calculated and complex, others more impulsive, almost whimsical. But nothing, literally nothing, is as unfettered as it was before.

In early May, I returned to full time work. The first few weeks were a bit touch and go as I reconnected with colleagues who were surprised to hear that my illness was ongoing. “Still? You still don’t feel good?” I felt like a total failure, as if my inability to bounce back was of my own device. Jennifer Senior describes this well in her piece in The Atlantic,

“Speaking only for myself here, I feel like this was a worldwide test that I and I alone among my cohort managed to fail. Pretty much everyone I know got the Omicron variant of COVID and beat it in a matter of days or weeks; I didn’t. When I learned that Joe Biden quickly got over his own case of Omicron, I burst into tears. How did an octogenarian manage to do that while I’ve been suffering for seven and a half months?”

In late July, an invitation to the leadership retreat landed in my inbox. It would require a grueling travel schedule, three days at 7000 ft. of elevation and hours upon hours spent in small rooms with large amounts of unmasked people. I hastily said ‘yes’, eager to return to who I’d been before, and then spent three weeks in a panicky hyper-preparedness mode. As the agenda took shape, so too did my intricate plans for maximal wellness. Outdoor manmade beach party? Ok, weird, but put on the bathing suit and swim away from people. A redeye and 3 hour layover on the return? Slip on the hip, rose tinted safety goggles, the mask nerd’s latest N95 reco and switch on your new LG personal air purifier. Incognito? No. Stranger averting? Yes. Indoor celebration dinner? Ok, not remotely inclusive, but simply don’t go. Instead, eat outdoors with your one colleague who is also Covid cautious and enjoy the mountain sunset from your strip mall al fresco seating. Get in bed by 9pm. Get up early to go for a walk and clear your head. Use your anti-viral nasal sprays at least every 3-4 hours and duh, hand sanitizer at every turn. If this sounds eerily similar to 2020, well, yes. Re-entering the village while avoiding the plague requires an immense amount of vigilance and sacrifice from the people whose lives are already taxed out the wazoo.

There are certainly alternatives to living this way. Many people suffering with Long Covid have kids which means attending school which now means no masking, and so they often forego any protocol altogether. There are also plenty of non-kid Long Covid people who choose to live without restriction. And most of them have gotten Covid a number of times at this point, which has either prolonged their illness or made it worse for a short period, or for a long period or, if they’re extraordinarily lucky, not made much of an impact beyond the week of acute sore throat and sniffles. Here again, the data wanders.

For me, this game of roulette is not one I enter into lightly, especially as I begin to feel like my life is finally coming back into focus. A friend recently remarked that I seem on constant high alert, ever scanning the world for threat of infection #2, expecting it and dreading it. But it’s actually the opposite. Not the high alert part- that’s true- but not because I am hanging out and waiting for the shoe to drop, rather, I am hell bent on making it through a whole series of post-Covid experiences without the setback of falling ill again. It’s more offense than defense. This summer, for example, I just really needed to not. be. sick. I couldn’t fathom a repeat of last year; I needed to swim and walk and have friends over for outdoor dinners and remember that elongated, sun drenched days need not be a matter of disaster. I needed my body to believe that and my cells to absorb it. The imprint of trauma is as much a bodily state as as it is a psychological one and I desperately longed to rewrite my cellular code. If Covid has shone a light on anything, it is this. We cannot simply will our bodies into forgetting.

I spent the better part of last week in Boston attending the same set of sustainability conferences where I initially contracted Covid. And the weekend before that at a well established yoga and healing arts center in a failed attempt at restorative downtime. Both experiences were overtly colored by the massive chasm between those who live ably and those who don’t. Feelings resurfaced. I grimaced behind my mask in between sessions on carbon accounting and human rights. At night, I wrung out the day’s sludgy grief in a sob fest with Heath and a text rant with my LC bestie. Once home, a coworker plopped the news in Slack that she’d tested positive for Covid and ‘she really hoped she’d hadn’t exposed anyone, fingers crossed!’. I’d sat directly across from her in a five-hour meeting and hugged her, briefly, before leaving. I was masked, but still, the possibility of radical harm surged through my body as pure fury. Surely the universe wouldn’t serve up an exact repeat of 15 months ago, right? And how nice for coworker x that she can casually ‘claim consideration’ through a shitty group text while I anxiously sit and wait for the very real possibility that my life may come completely undone. Again!! It’s too late, coworker x! You don’t get to ‘hope you didn’t expose anyone’ after the fact while doing absolutely zilch, zero, to prevent it!! Ugh, coworker x! Ugh. Ugh.

It’s day 9 since I was in contact with her, and every other potential vector, and I continue to test negative. By all accounts, I am in the clear. I passed through. As my friend who was also with me in Boston, and is also still feeling fine, texted me a few days ago, ‘We win!’. Or as another friend celebrated in a group text, ‘But you went! You showed up!’. Yes, yes, I did. And there are no fancy offsets or clever loopholes to reconcile the ledger and smooth out the impact. Living with post Covid syndrome in a post-Pandemic free for all some bears a hefty cost and to try and position it otherwise dismisses all of the work involved in ‘simply’ showing up. But I accept the applause. I offer it up, as well, to my tens of millions of fellow suffering beings who are doing their best to patch together a life in the oddest of hours. As I clap and cheer, I also weep.