Live not as a grim duty

Just a sample of the things that either didn’t work, did more harm or weren’t really the right prescription to begin with. Banished!

More leaves are gone than remain as our gentle mountain surround turns mostly see-through. Tufts of evergreen groves- spruce, pine, hemlock, cedar- darken whole patches of hillsides, a perennial series of places to hide, get lost, escape. It’s a time of year that many locals find underwhelming, a liminal stretch between the spectacle of high Autumn, all showy gold and crimson, and our actual winter with its promise of snow and all of the ruckus to be had on slopes and trails. I quite like these in-between times where whole views are rearranged and frost is not yet a constant. I like the volatility of the weather, jacket on, jacket off. I especially like feeling a bit like we’re neither here nor there so perhaps anything is possible. Like the parsley that suddenly greened up again this week with two days of warming sun or the milkweed that went from drying flower to cottony dander overnight, seeds now adrift on our late afternoon gusts.

As I round out month five of living with Post Acute Covid Syndrome (PACS), I, too, feel neither here nor there. On our way to Dartmouth this morning, my husband and I played the game of ‘what percentage back to my baseline of 100% pre-Covid’ do you think I am? Yes, this is a game. You haven’t played? Lucky jerk. We disagreed; he thinks I’m somewhere around 70%; I’d say 60% max. But I liked his rationale, grounded mostly in the shift in my mental health, from which much can follow. But not all. Or is this just a question of perspective? (Another game!) I was listening to a talk from the venerable Jack Kornfield earlier in the week about intention where he says“You’re all very loyal to your suffering, aren’t you? Which is fine, you have to feel it, grieve it, go through it. My mother would say something in Yiddish like ‘enough already’. It is time to let go and not live your life as a grim duty.”

I pressed rewind and play a handful of times. Not living your life as a grim duty, for me, and for most living with PACS, is the challenge. Albeit at 60% or 70% or whatever. And part of what makes this truly thorny with our particular syndrome is the ecosystem in which we navigate. In absence of double blind random controlled gold standard clinical trials producing efficacious diagnostics and therapeutics (that’s a mouthful), there is a vast wild thicket run amuck with everyone from Robin Hood to Dr. Evil along with many well intentioned do gooders just looking for their lot. Like all frontiers, the stakes are high so the willingness to believe in a promising protocol or person is also skewed fairly high, sometimes at great peril to those on the hunt. The supplements business is booming. Clinics offering H.E.L.P. apherisis, essentially a blood cleansing protocol, in places like Cypress, Switzerland and Germany have months long waiting lists and exorbitant out of pocket fees. Off label use of drugs, like low dose naltrexone, are taking flight and everything from gravity blankets to vagal nerve stimulators are commonplace in the homes of long haulers who can afford them. Deep in this maze, how to not live life as a grim duty, indeed?

For me, this has been a process of slow distillation. Not unlike our transitioning landscape with less to distract and greater line of sight. My regimens are few but consistent; breath work three times a day, meditation, resting in between activity, a small handful of medicines, some prescription, some not, walking as I can and acupuncture with a gifted guide. I have stopped chasing diagnosis. I have stopped hunting for the perfect concoction. I am willing to try new things when recommended by a trusted human, and if they provide relief, they remain. I have stopped believing that any one person can substantially shift my suffering. I have met the reality of our frontier with acceptance, and while it’s a frenetic horizon, I’m doing my best to drown out the noise. This means hard rules around how I dip into patient led communities; I no longer follow the #dysautonomia channel, which I don’t have anyway, nor #neurological, which only foments my worst future casting tendencies, nor #relapses because same. I focus on #victories and dabble in a handful of others but not without caution around what is actually helpful to read. I also don’t scour every research paper being published nor spuriously debate causality. Whether I have microclots or viral persistence or a dysregulated autonomic immune system or all of the above, the most consistent path for recovery is time and rest. And, I would argue, deep belief that there is richness to be found alongside the suffering, which means more time spent out of the vast wild thicket than in it.

This idea that enduring physical suffering can or should offer reward, transformation or wisdom is an ancient one, and not without warranted criticism. I voraciously gobbled up Meaghan O’Rourke’s latest book, The Invisible Kingdom, earlier this month where she devotes an entire chapter to this topic. She is a critic of the notion, having spent well over a decade with unexplainable chronic illness and very little support. She writes, “To the extent that illness is a quest, it brings you to a very different place from the one you thought you were trying to get to. And so I am wary of papering over illness’s real ravages with false pieties that allow us to look away from the true price exacted. Is illness in any way a lesson? Illness is a travesty; illness is shit; illness is not redemptive unless it happens to be for a particular ill person, for reasons that are not replicable nor should they be said to be so.” I agree with her and clearly see the warning signs of toxic positivity embedded within the trope. And, I still choose to believe in the opportunity for discovery, joy, even, in an otherwise very grim time. If that discovery ends in wisdom or redemption or simply having made it through with some sanity still intact, for me, it will have made a tremendous difference in how I arrive.