Rain check

We pull out of the driveway under a jet black sky, tremoring until heat rises from the vents and we can shed our hats and mittens. We keep quiet as we pass the craggy rapids under the Moretown bridge, slow this time of year as if the river knows it will soon stop moving and turn to ice. I recline my seat and attempt to shut my eyes but the river beckons. We follow it closely, hugging it’s Western shore, and I watch as the eddies pool behind boulders the size of our car. I read the river like a map, picking a line through the deeper sections and transport to another time, a younger me who spent whole summers paddling the creeks of Appalachia. That version of me wanted nothing more than the life we are building in Vermont, one governed by mountain and river, by barred owl and loon. We turn left and veer onto I-89 as the river joins another and fades from sight.

Ninety minutes later, I am being strapped onto a moveable platform with an IV in my right arm and a guy squawking something about breathing as he shuttles me into a tight tube that moans and clatters. For forty-five minutes, a woman’s voice tells me to inhale, then exhale, and now hold! as the clattering becomes more acute. I feel the chemical heat travel up my arm and across my chest, more breathing, more clatter. But I’m not really here. My mind has led us back to the river, traipsing along the bank, hopping from rock to rock as the sun breaks over the ridge line with the rosy flush of new dawn. As the test comes to an end, I am jolted back to the sterile surround, same guy, now squawking about how well it has gone as I hastily beeline for the exit.

As expected, my Cardiac MRI results are normal. And while I am grateful that the empress is healthy and whole, I remain stuck in the unknown as a deep pain radiates along my sternum day in and day out. My cardiologist and I agreed to no more testing at this time nor any more follow up in the near term. He wished me a steady, if slow, recovery, both of us awkwardly resigned as we hung up the phone. So, too, with my new neurologist who is part of the Dartmouth PACS clinic. As he ambled a sharp pin along my toes, feet and hands, I appropriately responded to the sensation, acing my basic exam with little concern. He put me on a new medication for the spastic electricity that roams my every part, which has done little more than give me nausea. No further testing required.

And while I’ve written recently about my acceptance of this reality, of having nothing to definitively point to or make me better, I haven’t said much about the anger that rides shotgun. I don’t talk about it much because, honestly, I don’t sit with it for very long. I tend to move into grief and sadness as they have felt far more resonant. But anger is very much alive and in the room, jockeying for air time as I try to meditate or nap or just go for a mellow walk. And the gist of anger’s plea isn’t pretty. It’s bleak. And ruthless. And cruel. Anger projects a vivid hologram of what is no longer true, of the life I can no longer lead until some scientist lands the solve and big pharma pumps it with cash.

Those of us living with Long Covid have been forced into becoming the great ‘modifiers’, rearranging our whole way of being to accommodate a world that has no interest in accommodating us. That’s how anger would have you see it. And there is a wealth of evidence to support that view. But I also hold compassion for the desire to just get on with things. Just getting on with things was how I landed here, flittering about Copenhagen at a conference with a thousand other unmasked individuals. I wasn’t thinking about this being a real possibility should I happen to catch the virus, nor was I was considering how my getting on with things meant that others, many, many others are less able to do so.

Recent data on how many people have been affected by Long Covid is staggering; in the US, 16 million+, globally, 100 million+. Four million are unable to work in the US, alone. As Gez Medinger and Danny Altmann write in their excellent new book on all things Long Covid, the silver lining here is that the sheer volume of people suffering is a great capitalist motivator. (le sigh) Funding for research and therapeutics continue to rise, albeit on painfully slow timelines. The first study- finally- on using Paxlovid to address viral persistence, a leading theory of causation- is kicking off at Duke in January. There is momentum, yes, but millions of people- millions- are still unable to just get on with things, and will be for months and years to come.

Our ten year anniversary was last week, poorly timed for a plethora of obvious reasons but also landing on the night before my MRI. My stomach was aflurry and I was struggling to find the spirit so we just gave in to our ridiculous misery and ate stale rice cakes with roasted turkey on top. Which led to laughing. And rain checks. And deciding to do the upcoming holidays differently. And then conversation about how to do our life differently, as in, be in this life, now, but differently. The life we are building, the one I’ve longed for since I was a teenager, still surrounds us. The river and the mountain are very much alive. The barred owl remains, the loon will return in the Spring. Yes, we can’t just get on with things in the same way as our neighbors but there is still much life to be had, albeit modified to fit the order of the day. Which can lead to places you don’t expect, like scanning for used Sprinter vans online (ungodly expensive but YOLO) or a new friend who arrived in the unlikeliest of ways and is just the person you’ve been longing to meet.