9.14.2022

The geese returned this week, low slung in V formation as they glide to a neighboring pasture. It reminds me that the last time I sat down to write in earnest, the winnowing tune of Wilsons Snipe echoed from dusk to dark. They are our harbingers of Spring, appearing just before leaves unfurl on the Cherry tree out front, in sync with the snowy blossoms of our Apple grove. So much feels possible in early Spring, so much life awakening, and so I attempt to conjure that expansive line of sight this morning as my chest tightens and my breathing is labored.

I’ve been toying with this relationship between body and land all Summer. In the earliest weeks of infection, I could barely make it outside but I could still watch the Yarrow turning from pale pink to blazing fuchsia just beyond our dining room window. So, too, with the garlic we’d planted last November, her zesty green leaves pushing up towards a warming sky. Those days were mostly spent in terrifying agony as I fought for every breath and yet just over there, in our carefully planned garden, life was carrying on in magnificent fashion.

I am a doer by nature. I participate. I lead. I conjure and toil and have a deep and persistent love affair with labor. I am far less of a viewer. Watching has never held my interest nor am I particularly enchanted with stillness save the few moments I stop and give thanks while on a forest run. And so, as expected, the first few months of falling ill were entirely about resistance to this new bodily state that made it abundantly clear we could only watch. And struggle to breathe.

Even in the breathing, I wanted to do, wanted to manage the inhale and the exhale, the timing, the depth. I bought every device I could afford that would give me data- pulse ox, smart watch, ECG ( this thing is actually very cool), blood pressure cuff. Data could lead to action. I wanted action, I needed it to sustain my capacity to cope. On my fifth visit to the emergency room, I convinced the doctor to do a CT. We’d already done a gazillion ECG’s, chest xray, five complete blood counts and metabolic panels. We ran Troponin for heart damage, D dimer for pulmonary embolism. Normal, normal, normal. But a CT! This could lead to cause and then to action. Normal. On my eighth visit to the emergency room, they called in the psychiatrist. I have yet to return.

All the while, our land was a veritable riot awash in Summer. Sunflowers soared above the dainty lettuces below. Our new apple orchard chugged into gear with her tiny new shoots and pale fuzzy leaves. Beets became beefy and begged for harvest. Queen Anne’s lace bloomed and swayed in the afternoon winds, elegant and wispy. I watched all of this, mostly from inside at first, later venturing up into the field, and I took it in. Bodily. Spiritually. I carved out the smallest of spaces for surrendering - to watching, to just being amidst all of the doing happening around me.

And then I fought like hell against it again. Each new appointment with a specialist stokes the desire for cause, for action. Living with a disease that is poorly understood feels like a perennial tug of war between hope and catastrophe. There is literally no plan, no clear testing protocols and a whopping dose of disinterest from the average practitioner. Any semblance of disease related salvation derives from other people who have been in your shoes or are struggling to breathe alongside you this very moment. You find them in advocacy groups, online platforms, community support networks. They are teaching me how to make that space for surrender just a tiny bit larger.

For the last month, my husband and I have been walking a mostly flat dirt road behind our farm. It’s a slow ramble, dogs in tow. We’ve steadily increased our distance and tackled a hill or two. My lungs burn and my chest aches and I am the happiest I have been in that forty minute window. Clouds scatter painterly light across the soft, ancient mountains and we watch more than we talk. I still have no idea what is actually happening inside of my body but in these moments I push that aside. Or I yell about it for a few minutes and then push it aside. This is today’s version of surrender. I’ll take it.