Paper chain

As if winter heard my relentless siren song, she arrived with gusto, blanketing the hillside as we watched from our bedroom window like giddy children eager to play. Winter has my heart. First, the wonder of early frost when lingering stalks of Hydrangea and Salvia are caught in stop motion, bent southward by the moody wind. To be followed, sometimes weeks later, by an actual hard frost, the ground no longer giving way to our heavy boots as we trudge our daily loop, the pasture grass now brittle and tawny. And then finally, snow, Winter’s glorious confection with her prismatic light and a smoothing over of all that irks and nags. Even our rustic shed, paint peeling and loose siding, turns dreamlike flocked in snow, more quaint somehow, more fully itself.

As it flurries again this morning, I long for my own internal snow, some life force to ease what has become untenable and cruel. I have entered a new season of living with this illness, one with throes of acute pain, odd bodily sensations and the mental drag of months behind me and months yet to go. Yesterday, collapsed on our kitchen floor, I was convinced I was slowly dying. “I don’t know how to get through this,” I mumbled through waves of tears. I felt poisoned, like some chemical agent has stripped me bare from throat to lungs to stomach and beyond. Every movement sets off pain as my breath engages in a perpetual game of tug of war with my rib cage and sternum. Over the last week, I have gone to bed feeling like this, risen feeling like this and spent much of my day getting from moment to moment feeling like this.

Last night, I reached out to my Long Covid community with an SOS. Three people immediately replied, urging me onward with strong conviction that this, too, will pass. They’ve been here, numerous times, in the trough of what is commonly known as a flare, or more aptly, a crash. As a first time visitor, I am still learning how my particular version of a crash comes to full expression. And what I’m gleaning is really hard to accept. Agony is really hard to accept, certainly for the one who is physically feeling it, but also for those around her who love and care for her. My mother gets frazzled in her own feelings of helplessness, repeating ‘Damn’ as she tries to comfort me with hope. My father goes more silent or analytical, a retired physician who can’t solve the puzzle. My husband wears a variety of hats depending on what is most called for; nurse, partner, goof ball and occasionally a bit of tough love coach. (Get off the floor; you aren’t dying.) My friends are a mixed bag, some drawing closer, others growing more aloof. Pain pulls us in all directions and leaves us a soupy mess until we learn how to live with it and live next to it, as unavoidable and thorny as it is.

Some years ago, my very close friend, Tony, was diagnosed with ALS at age 42. I had just leapt from the corporate world into growing my own business so I designed a schedule that allowed me the great privilege of helping to care for him in what would end up being the last year and a half of his life. Weekly, we made our way to a shabby building with water stained ceilings and harsh fluorescent lights where one of the most preeminent ALS teams in the country offered him what they could. Afterward, I’d take him back to his apartment and sit with him through a mix of crying, together, capped by silliness, as was his way. Tony insisted on securing a niche at the San Francisco Columbarium, both for its architectural grandeur and to be close to Harvey Milk, a fellow resident with a much more flamboyant (expensive) niche. After months of planning, we spent a morning unpacking and arranging his carefully chosen objects that were somehow meant to reflect the whole of him, a complex human who had traveled this life as a designer, a drag queen, a comic, a Tupperware collector and the very best kind of friend. So much of this seemed surreal at the time, facing death and pain with such keen acuity and resolve. All I knew, viscerally, was that if I veered away he would only suffer more, we would only suffer more.

I’ve been thinking of him a lot lately, imagining him sitting across from me and barraging me with really bad jokes that always end in punny drag names. And I’ve been actively trying to conjure the ‘us' that bumbled our way through his epic passage. While our experience was markedly different, we shared a sense of bravery and peace as we gained acceptance along the way. Even as he struggled to breathe or stand, we would tuck into his bed and watch Judge Judy- his pick, not mine- while he catcalled the plaintiffs and perpetually rolled his eyes. He never wasn’t fully him.

I turn fifty in a few weeks. Followed by the holidays, which are typically a time of year I cherish. We had grand plans that involved travel and lots of friends and all of the trimmings that such an occasion invites. With that no longer on the docket, I’ve waffled over whether we should head out of town to a nearby rental, maybe Maine or even Lake Champlain, but as my crash continues I realize how safe and happy I feel at home. The other evening, I spent an hour making a paper chain garland to hang in our dining room. I felt lousy but I wanted to still feel like myself. Fully. I wanted to stick it to this menace of a virus and deck the damn halls. My husband came over and helped, each of us building opposite ends of the same chain, an act of solidarity, of defiance!, against the agony that persists. (who knew a paper chain could hold such weight?) Tony would be proud. It’s what we would’ve done together, knowing full well he might not have seen Christmas. One more tick against the dominion of pain, one more act of living in spite of it.