Invisible

The sky is low slung today as rain gathers to the West, inching towards us for a late afternoon greeting. We need it. Our Autumn has been overly temperate and dry with Yarrow sprouting anew and our fledgling apple trees still festooned in brittle amber leaves. Almost midway into November, it has yet to snow. Autumn is stuck, like the droning repeat of a scratched record with no one to lift the needle and finish the song.

I am also stuck, in a spin cycle of nausea, searing stomach pain and broken sleep, ignited by a series of bad decisions from a doctor I wanted to trust. Perhaps not bad decisions, per se, but definitely ones made with little original thought, which is a pain knoll in treating complex illness. We are all, in fact, unicorns. My pages of notes and recorded data are not for my own folly; they are to help the caregiver understand that I am not like the LC patient they saw before me nor the 100 before that. As Covid is a perpetual shapeshifter, each of us is a singular host.

Sullen and worn out, I left the house on my own this morning for a solo walk. I shed my jacket about a half mile in as I listened to Dr. David Putrino, neuroscientist and Long Covid researcher, discuss his latest findings (this is a fantastic piece of tape btw) born out of work he’s being doing with Dr. Akiko Iwasaki, the brilliant immunologist at Yale who is also leading the way. I passed my usual landmarks as my mood shifted, overcome, really, by a level of advocacy and passion almost entirely missing in my biomedical experience. I passed my turnaround, climbed another hill and realized I’d carried myself farther than I have since June 15th. If there is one constant to be had in this journey, it is the fathomless need to be seen. And heard. Even if that visibility emanates from a set of ear buds, spurring you on to break a new distance record in your very long recovery. (2.5 miles, with hills, huzzah!)

I quipped at my husband about this earlier today, my stomach roiling and loud. It was a conversation now indoctrinated as part of our weekly choreography: I reach a breaking point, tear up, get mad about how alone I feel, blame him for not doing things like calling and yelling at my doctor (unreasonable at best), cry harder, say I don’t like something about the room we’re in or the clothes I’m wearing or the clothes that he is wearing, apologize as he attempts to soothe while I repeat how very, very tired I am. Today, though, was slightly different. Today, I repeated how invisible I feel. Sure, tired, but the invisibility is actually what is wearing me out.

Which is how, this week, I found myself in two online mystical worlds I’d never imagined, the craggy bog of benzo withdrawal, aptly named benzobuddies, and the twee shire of stylish compression wear for people living with Dysautonomia (70% of LC patients are diagnosed with Dysautonomia), specifically Postural Orthostatic Tachycardia Syndrome (POTS). For those of you whose future may include a doctor telling you to do a quick, two-week taper off of low dose Klonopin you’ve been prescribed for 10 weeks in order to sleep, you have my permission (my urging) to fire them upon leaving. If they also tell you to start taking another drug known for racing heart and GI issues at the same time, all bets are off, say what you want at top volume, and then promptly fire them. And definitely do. not. do. either. thing.

As my frazzled neurological system worked out its ire on my gut and heart this week, a radical new book landed in my queue. The Long Covid Survival Guide is the definitive anthology of our present relationship to this idiosyncratic disease. Authored by Fiona Lowenstein, founder of the vital patient-led community Body Politic, of which I am an active member, it contains the multitudes of pain, grief and survival that is Long Covid. I worked my way through the first half, my invisibility lessening with each page, my body loosening with likeness. I thought about how lucky I am compared to those who started this plight in 2020, desperate, on total lockdown and very much alone. And yet, still, today, I have to essentially get a PhD in all things Long Covid to hack my way through how to stay afloat.

About two months into Long Covid, I began writing a list of mantras on the steamed up shower glass as I dried off and thought about how much energy it took just to bathe. I liked the ritual of it, foregoing our usual squeegee and leaving them to turn invisible as the glass dried. At some point, my husband got in on the game and I’d find ones he’d written, for me, after he showered. We didn’t really talk about it but kept at it, the smudged evidence of our overlapping letters and thoughts growing visible after a week or two of not cleaning. It’s almost reason to stave off the sponge, live with a little grime and celebrate the palimpsest that emerges, undeniable for all to see.