resigned, alone, and forsaken,

broke, poisoned, flu-ish, concussed ...

okay, so this is how people have sounded to me:

we never see you.

you never visit.

you don’t care.

you never go to family functions and important celebrations.

you’re not being a good mom daughter grandma niece cousin friend.

you need to get a job.

you’re tired? fatigued? exhausted? how dramatic. I’m tired too.

what do you mean “dead batteries,” do you think you are a robot, i don’t get it?

ah, you’re deconditioned from being sedentary.

you should try exercising.

strength training.

pilates.

hula hoop.

yoga.

physical therapy.

you’ll be back on your bicycle in no time.

could it be burnout?

you should be over it, you’ve barely moved in years, maybe it’s menopause?

it’s probably that, you’re getting up there. you still have periods?

at your age?

heavier than before - oh wow.

have you tried drinking water?

i know people recovering from cancer more active than you.

i know people recovering from surgery more active than you.

i am eighty and more active than you

i know people who had covid way worse why were you never hospitalized?

your cousin got a job where she travels around the world.

we are going on a trip.

we are going on a trip after our trip.

we are going on a trip after our trip after our trip.

you should go on a trip.

why can’t you afford to go on a trip you should work harder and save better.

you’re going to a doctor for this?

a specialized clinic that requires a referral and your first appointment was six months after your referral?

wow, that many patients?

seems busy.

why can’t your regular doctor treat you? what are they doing?

what are you taking?

have you tried antidepressants? could you be depressed?

you need fresh air.

we never see you anymore.

did you get my email?

why don’t you answer your phone?

I was active, a mother of four (last wee bird left the nest in early summer), a grandma, cook, a nontraditional university student, a bicycle commuter, a gardener, an errand runner, a person who used to sometimes go to fun and interesting places to do enjoyable things, who visited friends and did art projects and wished I could clone myself so my clone and I could have a decent work/life balance.

I remember getting tired, not wanting to get up earlier than the rest of the world to make breakfast for people with “real jobs” but doing it anyway, and thinking “whew, i’m wiped out!” but feeling strong like i accomplished something or at least made friends, learned songs, stayed active, and got paid (shitty). I treated my thyroid issues with ashwagandha and it helped me keep up. Sometimes I went to the movies, played video games, read books, and nearly every day cooked meals, and tried to tidy the house and stay on the chores and be a good mom but it was never enough, there was no time when I had money or money when I had time and sometimes there was neither.

relearning to draw, 2022

When the pandemic hit I was working on my feet for 6-12 hours a day, my bicycle commute added around 20 miles a week, a daily four mile round trip — which I walked the last couple of weeks before shutdown when my bicycle pedal snapped off. I remember budgeting to go on an archaeological field study, and wanted to propose an anthropological study about American transit options where I would ride buses and trains and interview willing travelers, but covid hit and suddenly there were no plans or thoughts of any future at all.

After recovering from covid in March-April 2020, I learn carpentry, work on my garden, design a chicken coop, hula hoop, do yoga, draw pictures, and use a little app thingie to help me manage my time, meditate, exercise, listen to stories, declutter, philosophize, and drink water. I go for one bike ride.

One.

I hoped I would be able to run errands and take pictures around town of the aftermath of lockdown but I feel cold, and struggle to breathe and balance. I dismount without sliding to the ground, drape my fading body over the handlebars and use my bike as a walker. My head is full of ocean, I will the smoky darkness blocking my eyes to dissipate into chaotic prismatic pixels and reveal where I am so I can get out of the cemetery (of all places to be) and go home, blistering pavement, I want to block the sun, I don’t want to die, thinking of all those ends I left loose, barely more than a block away from home. I remember that but not much more for months after. Things come back, the best and the worst, but the in-betweens are fuzzy. The memory switch flips back on in late 2022 when a series of traumatic and personal misfortunes happen and I start death cleaning.¹

I awake in late 2022 to a Rod Serling sci-fi bananas world, realize so many people are also shuttered away from their own old lives, our connections to loved ones disintegrating faster than our neurons, and wonder if their stories are like mine, if the takeaway from most (but hopefully not all) interactions with strangers, friends, family and people we used to trust is:

nobody believes me.

It is terrifying not to be believed while we slowly or suddenly die. How will we get better if nobody believes us? Maybe this is just life now.

Sometimes I don’t believe me either. I decide to “be well” and start moving furniture around in the house, turn the compost, try to fix the pop-up greenhouse after a storm, tinker with the push-reel mower and test it out. I think I’m okay and the next day I can barely move. I cancel plans, immobilized by crushing gravity and pain, light sensitive, sound sensitive, “poisoned, flu-ish, concussed,”²and like sinking down into my melting legs when I stand. When my youngest son graduates high school I watch on my laptop in the dark with ice packs, fan on high, clothes for the ceremony draped over a chair, make frequent trips to the bathroom as they call out everyone’s names, hoping I don’t miss him.

Sometimes I don’t believe me and think I can quit taking allergy medicine or ashwagandha or pain relievers because they don’t do anything and then realize that they are the reason I function the moment my body misses the dose.

Sometimes I don’t believe me and ask my doctor if this is real, if I am crazy, why are my labs normal, I can’t make a living like this, there is no money, and I have to redo all the paperwork to prove to a stranger that I am sick after waiting months for them to reject my case over a misunderstanding about what forms to fill out. I put it off because of migraines and then forgot until now. Suddenly frustrated about something else.

sometimes a follow-up appointment with the long covid clinic nurse/concierge/master of ceremonies goes a little like this …

good morning! any changes since last visit?

hm, well i can make you a referral to a dermatologist.

yes your symptoms are mostly consistent with what we see here, best thing to do is well, you know better than I do, probably  ¯\_(ツ)_/¯. What has worked for you? What helps?

are you what? dying? Um … no, as far as I can tell you are living, we’re talking right now.

Do you feel like you are dying?

Are you safe?

Do you have someone to talk to, supportive people who care about you?

nobody believes you and the people who do have already heard it all?

yeah, we hear that a lot too.

haha, yeah yeah, well we ruled out every other known disease so at least you don’t have …

oh, wow — “anything with a cure or treatment,” haha wow, grim.

oh you seem unamused. oh … that wasn’t a joke.

I wouldn’t use the term “winging it.” just trying to keep you comfortable and at ease.

yes this is real.

what if we double your antidepressants today, how would that be? Or augment them with xyz?³

he takes notes, probably questions his life choices, masks pain, maybe he read some controversial journal article he doesn’t want to believe is true, he doesn’t want to talk about that one yet, the one that could cause public panic or drive his clinically depressed patients off a cliff, does he wonder if I have seen it? are we avoiding the same words? Can we just agree it was a computer model and not that unspoken fear?⁴

It must be a strange place to be, processing through thousands of patients who beg for answers, more questions than answers, no answers, just question after question after question after question after question after question about plague management hit back and forth over a net.

^ my last telehealth visit

millions and millions of people have disappeared from public spaces. nobody believes them either.

what does it look like out there, in the world?

does anyone miss us? Is there an us-shaped hole where we used to be?

Will our families please learn about this condition and cut us some slack?

Will they listen and try to understand that this is a counter-intuitive malady, exertion makes it worse, and it is cruel, we would be grateful for half the energy we used to have?

Why would we stop doing things we love, seeing people we miss, why would we give up on even talking to them, why would we feel better off without their help at this point if only we were not so weakened?

Sometimes I think I’m getting better,

check the bike tires, plan a route,

but it comes back, pain, muddled thoughts, the concussed feeling, somewhat diminishing resigned terror. Terror I am used to now, terror that no longer gives me panic attacks because there is medication for that and this pill is very small and easier to swallow than the gigantic multivitamins and floating nattokinase supplements.

The illusion of health we present when we must be somewhere requires incredible effort before we leave our homes, when you see us, treat us like magical rare wonderful beings, please — it would be a nice change.

On top of fridges and in medicine cabinets is an arsenal of otc drugs, vitamins, weird magical herbal and fungal potions, and prescriptions, and it makes us too full for breakfast. We select clothes that both fit the version of our bodies for the day and cover new skin problems on arms, legs, shoulders. Sometimes we bleed a little from little pinpricks that appear out of nowhere and stick to dark colors. What is the long covid look? Is there long covid chic, something comfortable that doesn’t make us feel so gloomy? I re-embrace babydoll dresses and leggings, wishing I still had my old ones from the 90’s.

Some people have trouble showering. I could sit in the tub under a running shower all day, but the very necessary post-shower skincare ritual and getting dressed are exhausting — I need a nap every time. I don’t know if I look healthy or not but rest assured if you see me in person i probably needed days to prepare and will need more to recover.

Why is it easier to believe we are spoiled little princesses? I did not give up a steady income and quit seeking jobs where my degree is useful, riding my bike, and seeing my family to pull one over on anyone. I worry that the more our loved ones misunderstand us, the worse it will be for them when they get sick too.

1. I don’t have the book (waitlisted at the library) and haven’t seen the show (I saw an ad and meant to, but forgot) but the concept has some sort of meaning in my head, so I’ll go with that and compare notes later. “Death cleaning” as a housekeeping method sounds fairly straightforward.

2. Yong, Ed. “Fatigue Can Shatter a Person,” The Atlantic. https://www.theatlantic.com/health/archive/2023/07/chronic-fatigue-long-covid-symptoms/674834

paywalled, but it is so worth it to scroll down People’s CDC COVID-19 Weather Report: August 21, 2023 because Ed Yong has shared it on pdf and audio, bless him.

3. he mentions the generic version of some unintelligible pharmaceutical product I heard of on tv but didn’t know what it was for. I figured whatever it was helped you do plays, attend your child’s wedding rehearsal, go skydiving, make quilts, or throw frisbees at dogs, but now I have to check my after-visit notes and see what he was talking about and if it will at the very least help me take short walks to the little store for wasabi almonds and Topo Chico without feeling run over by a chariot afterwards.

4. Iñigo Ximeno-Rodríguez, Irene Blanco-delRío, Egoitz Astigarraga, Gabriel Barreda-Gómez, “Acquired Immune Deficiency Syndrome correlation with SARS-CoV-2 N genotypes,” Biomedical Journal, 2023, 100650, ISSN 2319-4170, https://doi.org/10.1016/j.bj.2023.100650. (https://www.sciencedirect.com/science/article/pii/S2319417023000872)

Abstract:

Epigenetics and clinical observations referring to Betacoronavirus lead to the conjecture that Sarvecovirus may have the ability to infect lymphocytes using a different way than the spike protein. In addition to inducing the death of lymphocytes, thus drastically reducing their population and causing a serious immune deficiency, allows it to remain hidden for long periods of latency using them as a viral reservoir in what is named Long-Covid Disease. Exploring possibilities, the hypothesis is focused on that N protein may be the key of infecting lymphocytes.

Method: The present article exhibits a computational assay for the latest complete sequences reported to GISAID, correlating N genotypes with an enhancement in the affinity of the complex that causes immune deficiency in order to determine a good docking with the N protein and some receptors in lymphocytes. Results A novel high-interaction coupling of N-RBD and CD147 is presented as the main way of infecting lymphocytes, allowing to define those genotypes involved in their affinity enhancement.

Conclusion: The hypothesis is consistent with the mutagenic deriving observed on the in-silico assay, which reveals that genotypes N/120 and N/152 are determinant to reduce the Immune Response of the host infecting lymphocytes, allowing the virus persists indefinitely and causing an Acquire Immune Deficiency Syndrome.