Epistedemiology: 99 Days

Julia Lee Barclay-Morton

I wrote this essay on the ninety-ninth day of long-haul COVID in June 2020. I was one of the first people infected in NYC in March 2020 and one of the first long-haulers. It is hard to overstate how little anyone knew about what was going on. I was also in the midst of a process that would lead to an autism diagnosis at age fifty-seven—a process that took over a year due to the shutdown. In July 2020—a month after I wrote this essay—I ended up in the ER after a transient ischemic attack, also known as a ministroke, caused by a dissection in my carotid artery, which was yet another effect of long-haul COVID. This essay is excerpted from my hybrid collection The Mortality Shot, published in October 2022 by Liquid Cat Publishing.

1. My great-grandmother died of the Spanish flu in 1918 in Ansonia, Connecticut.

2. I feel connected to her now in a visceral way in our apartment on West 204th Street in Manhattan. Indeed, felt her presence before I got sick. I saw it coming in late January, felt it in my bones—no, more precisely: my lungs, a crushing heaviness in my chest making it hard to breathe, a physical presentiment. Begged New York City to shut down weeks before it did. Unsurprisingly, no one listened.

3. Language is only approximate. The body is where this is happening. Its language stores the knowledge.

4. No, that's a lie.

5. I can only access bodily sensations via neurological channels. Organizing it within milliseconds as my so-called experience.

6. Buddhists knew this perhaps? This is why life on earth as we experience it is called maya? An illusion. A dream. A fiction.

7. Is the witness real? The vagus nerve?

8. Maybe this is all a hypothalamus after-party?

9. The energy surges like jolts of electricity shooting through my body from sole to crown out of the blue—usually when sitting or lying down.

10. The pins & needles in my legs, the newest symptom. Neuropathy is what the neurologist diagnosed, who struck the back of my ankles with his little hammer only to see neither of my feet move. Peripheral neuropathy, which on the chart reads pleural neuropathy. Obsessed with neurology.

11. Am I damaged for good? Damaged goods? Anything good about damage?

12. Will I heal fully or partially?

13. The chorus of I don't know from both doctors and my own research.

14. The endless stream of scary articles based on non–peer reviewed research. Reading them too late at night on my phone.

15. Not good.

16. The fears of clots and heart attack and stroke and before that of hypoxia in my lungs.

17. I am lucky though. Only minor neuropathy in my feet mostly, a sense of smell that comes and goes. Steamroller fatigue.

18. This is considered lucky.

19. No one knows anything.

20. My body though—it does know. My cells won the battle. But is virus RNA masquerading as antibodies—Trojan cells, waiting to attack? That is a theory in one of the frightening articles.

21. I am writing this at dawn. The sky had been hot pink at the building horizon. Now the whole sky is bright pale, waiting for the blue to color itself in.

22. I could not sleep and decided to get up to write this.

23. Did I mention the burning of the esophagus? That which mimics a sensation of heart attack, radiating out like a mushroom cloud in the chest. Making you sit upright to ask: is it gastritis, my lung's pleura in embers, my heart on fire? Checking the pulse-oximeter for heart and oxygen readings. Playing doctor at 3:00 a.m.

24. The sleepless nights afraid that if I fall asleep I might not wake up? What if I am wrong?

25. The nights of having to access somehow that deep still place—vagus nerve? God? Mind? Witness? To ask it: to ER or not to ER?

26. I do not go to the ER. Imagine the scene. Imagine the looks of the docs seeing a middle-aged woman and thinking: panic attack, oh she has nerves. Imagine my lack of desire to face withering contempt or condescension—alone, since no one can join me, no male gaze in the form of my husband to mitigate this. Also can't see making the paramedics walk up and down a top floor walk up. My codependent fears outweighing even the fear of dying. Imagine.

27. Walking into the doorjamb at 2:00 a.m. in the dark after reading one of the scary articles on my bright phone. Adding a minor concussion into the mix.

28. Surprise!

29. This is Day… what? Now. At time of writing. Day 99.

30. Some people count the weeks.

31. We are a cabal. The long tails, the long-haulers. They don't know what to do with us. If doctors didn't get it, too, I doubt anyone would believe us. But they do. Male doctors. So now, we are real. We are believed.

32. Is it all lodged in my brain now?

33. The impossibility of calm when need it most.

34. Let it be just as it is.

35. The mantra.

36. The breathing.

37. The moment of calm in which I know I will be OK. Like touching the bottom of the ocean floor beneath all the ruckus on the surface.

38. The inexplicable intuition that I will live to ninety-eight and die of old age, "happy as a clam."

39. Seriously, that was the wording of the intuition: Happy As A Clam. (Let us hope clams are indeed happy.)

40. And looking out at the ocean.

41. Perhaps Westray. The view from Kirbest—where the North Sea and Atlantic Ocean meet—more on the Atlantic side—at the beginning (or end depending where you start) of the Western Walk?

42. Maes Sand. The seals that follow me as I walk along the shore, their heads popping up like U-boat periscopes, giving me the side eye. This white sand and clear blue-green sea where my soul resides stubbornly. Waiting for me to return.

43. As of now not allowed to do so. I am an American. Citizen of the pariah state. A death cult.

44. For real. It's like Jim Jones is President and we are being forced by his minions to drink the Kool-Aid.

45. A siren. A mournful siren. A reminder. You are the lucky one. You are alive. And the fear: will that be me next?

46. My best friend had to remind me when I was trying to muscle through work obligations that were crushing me around Day 20 or so: you have what could be a fatal disease.

47. I thought she was laying it on a bit thick.

48. She wasn't.

49. Friends who are not sick posting scary articles over and over. I hate them. The ones who are on the sidelines and have the luxury to mull it over. Like it's a science experiment or a fucking game of odds. I know that isn't fair. But it's how it feels.

50. The fear is impossible to describe. Such a tiny word for such a tsunami of sensation.

51. It's not all in my head. Any more than all your experiences or mine.

52. PTSD informs this. Mine. Yours. The nation's. The world's. We are being traumatized en masse.

53. The people who believe our death cult leader even more so. They are the Kool Aid distributors. When they wake up—if they do—they will almost surely collapse.

54. The rest of us? What can be said? We cling to the idea that an election will change this. I do. Is this naïve?

55. Nothing is normal. And now we are banned from Europe. The United States of Covidiots who can't wear masks to save one another because: freedom.

56. Finally our eternal adolescence is ending with consequences. Will we learn? How many more people will have to die?

57. To have this is to have the body politic woven into one's own cells.

58. The political is personal. To reverse the old feminist saw.

59. I knew it was anyway, but now my body is backing me up.

60. Sometimes I blame myself for my fear of it. As if that brought it to me. A tortured reading of Artaud's notion of who did and did not succumb to the plague. He said those who were not afraid were spared. Welp. We now know that formulation—as seductive as it appears—is flawed.

61. Did my husband and I get it from the guy who installed our new Wi-Fi the week before the shut down?

62. Maybe. He didn't know either. We did not wear masks or gloves. I wiped everything down after he left. It was all about surfaces. At that time we were told masks did not matter. Now we know: they do.

63. Vietnam knew. They have zero deaths. Life as it turns out is not cheap in Southeast Asia as General Westmoreland claimed in 1974. No. It's cheap here. In the land of the Big PX. Where there appears to be a fire sale on the vulnerable.

64. This is so much less clever than I had hoped. Instead all you are getting is the raw footage.

65. I am writing this naked. Literally. Sitting on my meditation chair in front of a gated window that opens out to a fire escape, the street five stories below quiet at dawn.

66. My cat Ugo's butt and tail and hind legs are visible. He follows me around the apartment at night when I pace, then half hides behind the study divider. Visible and not.

67. When I sleep he curls up at my feet and sometimes—the nights I have been most afraid—he sleeps next to my head—his purring so loud in my ear—emanating from his chest—the pulsing of his heart and lungs a reminder of a calmer pulse.

68. I am so tired now.

69. But if I try to sleep I will turn and turn and turn like a rotisserie chicken trying to get comfortable.

70. I will obsess over the prickly feeling that comes and goes in my legs and the bottom of my feet.

71. Sometimes I stare at my veins. Are they larger today? More pronounced?

72. It is scary to even say I am getting better.

73. What if it hears me and comes back?

74. This shit makes you superstitious.

75. On some days I have actually said: get Behind me, Satan!

76. And I am not religious.

77. This shit makes you religious. Belief in a false god? (Any god will do.)

78. But I do believe in Something—but hesitate to name it—lest it diminish to human scale.

79. So the writing always feels false. If I believe naming diminishes—what the fuck am I doing?

80. Ugo's hind legs are up in the air now, his tail splayed forward.

81. When I was a child, I wrote numbers from one to as long as I kept writing. I don't know when I stopped. Just numbers. 1, 2, 3, 4… You get the idea.

82. I forgot to tell the diagnostician about the dolphins.

83. Did I mention? My brain is now in fact being examined.

84. Which is of course what every fourth-grade teacher tells her unruly students needs to happen.

85. I thought when I was around thirteen or fourteen that I could learn to communicate with dolphins. I read John C. Lilly. I knew it was possible. And thereby save the world, because they are so much smarter than us.

86. This was a common theme.

87. Always trying to save the motherfucking world.

88. As if it ever wanted to be saved. Or even if it does—why on earth would it be me that could do that?

89. No, that logic never stops me.

90. Before the dolphins—age eleven to twelve—I was an Evangelical Baptist that was going to save the world by saving your soul. I knocked on doors witnessing. I handed out God Is Love pencils.

91. Before that I tried to figure out how to have a world without money. I lay awake at night—age five or six—trying to sort this out staring up at the ceiling—my Winnie the Pooh bed spread on top of me—the Winnie the Pooh lampshade to my left on the nightstand, all of my stuffed animals lined up on the right against the wall just so. I tried, too, to imagine what the French looked like in chains. Something my first-grade teacher had told us no doubt. This was 1969 in rural Maine.

92. After the dolphins it was theater and politics.

93. And now it's my body (and many other bodies—millions of us), the ravaged site of this body politic where battles rage/d. Can it be of service?

94. I will go to the post-COVID recovery center of Mount Sinai on what will be Day 101.

95. Can they help me? Can I help them?

96. Can this body save the world? (Our bodies? Our selves?)

97. Mine? Yours?

98. The rising sun rinses the sky pale bright. And now I will try to sleep again. Sometimes this works.

99. Re-counting days like sheep, March 23–June 30, 2020.

Julia Lee Barclay-Morton, PhD is an award-winning writer/director, whose writing has been produced and published internationally; her first book, a hybrid collection, The Mortality Shot is out now with Liquid Cat Books; recent publications in Autism in Adulthood, Oldster, Prairie Schooner, [PANK], Heavy Feather Review. She founded Apocryphal Theatre when in London (2003–11), which work was the basis of her fully-funded PhD from University of Northampton (2009); all her experimental stage texts were streamed in 2022, commissioned by Radio Art Zone. She lives in NYC with her husband and cat where she is working on a researched memoir about reframing her life after being diagnosed Autistic at fifty-seven alongside a parallel history of the mis/treatments and mis/conceptions of autism in her lifetime. More at TheUnadaptedOnes.com.