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  • Writer's pictureJulia Lee Barclay-Morton

One year COVIDversary

A good sound track while reading this post may be Another Green World by Brian Eno. I now do my morning yoga to this album, which was playing in my memory, until I finally subscribed to Spotify. So what was once a youthful memory is now firmly back in my present.

It's been a year since I got COVID in New York City at the beginning of a pandemic no one understood at the time, including the doctors. All the best ones admitted how confused they were by it. Living at the top tip of Manhattan in Inwood meant hearing sirens 24/7 bringing people to the local hospital. The director of the ER at this hospital (Allen Pavilion, a satellite of Columbia Presbyterian) became so overwhelmed by the amount of people dying in her hospital she killed herself in April. So, clearly, I was not going to the hospital unless I could no longer breathe, or—as suggested—if my lips turned blue.

As many of you know who have been reading my blogs or Facebook posts, I did recover from the acute infection and then began a seemingly endless post-COVID long hauler odyssey. (Much of the time spent on the sofa looking out the window at the view I painted above many months later.) I was getting CT scans and X-rays, looking at lungs (minor damage but not too bad, a relief) and heart ultrasounds, again OK. So what was going on? The fact was: no one knew. I had a wonderful rehab person at Mt Sinai I spoke with weekly, and various docs I reached out to via her suggestion. Everyone was groping in the dark. Everyone was doing their best. Everyone was lost.

My time at Allen Pavilion came in July, when I had a weird incident, waking up to not being able to speak or move for probably 15 to 30 seconds. I did not know what happened, and my husband and I did some self tests we remembered (some of which another doctor had given me when I gave myself a minor concussion in April walking into a door jam) and it didn't appear I had had a stroke. However, when I talked to my GP later in the morning, she said it sounded like a TIA (aka a mini stroke) and if I felt odd or it happened again, I should go to ER. So, many hours of dithering later, I decided to go to the ER because I realized one side felt a bit weaker than the other.

When I arrived at Allen Pavilion, they asked me why on earth I had not come earlier. I answered by telling them the truth: I don't know. I didn't know. I could have gone into a long song and dance about being afraid no one would believe me because I am a woman of a certain age and thought someone would tell me I was having an anxiety attack, but since they were so clearly taking it seriously, that just seemed rude, even though it was in part true. Also true is that I grew up never wanting to make a fuss because it was clear I was not meant to be a bother; my job was to care for everyone around me. So that kind of encoding runs deep. The miracle is: I did get to the ER at all. And that can be attributed to 34 years of sobriety, decades of therapy, daily meditation for 25 years and a regular yoga practice. I shit you not. I need all those things just to get up in the morning and behave like a facsimile of a human being.

So, they wheeled me in for a CT scan on my head and neck, did an EKG, took rapid tests. I waited for hours, as one does in an ER. John, my husband, stayed with me as long as possible, past the time he was meant to leave. The security guard took pity on us, since I was getting no answers about what was happening other than some of the acute blood tests came back negative so that seemed hopeful. Around 10pm, a nurse said, OK we are admitting you because you have a dissection in your carotid artery. I burst into tears. I had no idea what that even meant, and had been expecting to be discharged and told it was no big deal, go home and take an aspirin or something. John had to go find someone to explain to me what had happened, because I could not stop crying. And they did. It was a small dissection, someone showed me a drawing I could not really wrap my brain around, but they need to observe etc. I was just blank and sad and freaked out. A doctor friend I was texting with when I told her the diagnosis said, "Oh my God, you won the lottery!" I asked her why. "They never find this until it's too late. It's amazing you went to the ER after such a short episode and they found this!" So again, as so many times through this harrowing year, my bad news was good news, even if it's not news you want at all.

I stayed at Allen Pavilion for two days. They let me go when they decided after more tests, including MRI and heart ultrasound and a heart monitor that I was stable. I had a follow up visit scheduled for September. That seemed very far away. But I was glad to leave the hospital, even though everyone was super nice and I had a weirdly nice view out the window. However, it was impossible to sleep since people were suffering and moaning throughout the wing, including my roommate, an older woman with dementia and heart failure. She had family who visited during the day but was bereft and confused at night, and because she spoke no English had to have a translator. So the regular nursing staff scared her. It was summer, so they weren't so swamped with COVID cases, but pretty much every nurse and orderly I spoke with had had COVID. They were all clearly traumatized. So we all had that in common.

Because I am an idiot, I insisted on walking home, and going to pick up my prescriptions. John reluctantly went along with this. By the time I got home (it's only a little over a mile) I was whoozy of course. I just had wanted air, and we live in a 5 story walk up, so I knew if didn't walk home I would not get any air for a while.

The irony of this event is it came after I had written a blog post here saying how much better I was feeling. So, you can imagine how hard it is for me to now say when I am feeling better. Magical thinking, I know, but still.

What followed is the story of finding an excellent vascular-neurologist. She was the one assigned, but gave me an appointment within a week (not a month and a half later September), and we began a long odyssey together that continues to this day. She spent over an hour with me the first time showing me all the imagery and discussing what can cause this: answer, who knows? There are so many possibilities it's hard to ever know. Assuring me she thought I would heal just fine, and also telling me yes: because I had had COVID there was a lot we did not know. She was the one who told me in April they had all been looking at each other and asking: is everything we learned in medical school wrong? She also assured me they had learned a lot since. Because of her humility and precision, I believed her. First, she took down some of my meds because they made me feel like a truck ran over me and upped another one to something that did not attack my stomach.

What I learned, and was not surprised to find out, is that the inner right carotid artery is one of the places where the sympathetic nervous system runs up to the brain. A dissection can indeed be caused by an over-reaction of the sympathetic nervous system. As someone with CPTSD (complex PTSD from childhood) and with a dysregulated nervous system thanks to long-haul COVID dysautonomia, I wondered if this could be the culprit. But a dissection can also be caused by inflammation or even doing yoga if stretching the neck too far or too violently. It's the thing that happens to young people who have strokes. So, at 57, I was classed as young. She did give me the go ahead to do gentle yoga, however, because I am a yoga teacher. But I had to be super careful with my neck.

She has since seen me whenever I asked (all virtual) and answered emails within a day or two. She has talked me down off many ledges and assured me she does not see me as "anxious" but instead dealing with a difficult situation, made even worse by having had COVID and long haul COVID symptoms mixed into the dissection symptoms, creating an alphabet soup in Cyrillic.

Trust me when I tell you that the recently trained yoga teacher thing is what has turned out to be the most useful thing of all, all throughout this journey. Not simply because I had yoga postures and breathing techniques I could use throughout, including acute COVID, which may have been much worse for me without them, but also because of the empirical nature of yoga philosophy. This practice asks you to observe yourself without judgment, and to subject each suggestion and experience to empirical analysis, with as little preconception as possible.

Without going into all the details, because that would be a book length manuscript, this has meant: learning about somatic healing practices via multiple conferences and workshops on trauma and the nervous system, losing my knee-jerk distrust of conventional medicine when I had found doctors (mostly all women) who I could trust, figuring out how to align their suggestions with my own body and reintroducing Ayurvedic and Chinese medicine, which also turned out to be super helpful. Then topping it all off with an excellent occupational therapist who does craniosacral work. And telling everyone involved what I was doing.

I had to learn to trust my own body to tell me what it needed, while simultaneously not believing the CPTSD amygdala "smoke alarm" that is always stuck in the on position telling me I am in danger. I have to do a lot of interventions on myself to turn off the alarm. However, I also discovered the hard way a couple times, knowing when to listen to it. Because if you have a faulty smoke alarm, the answer is not to throw out the alarm system, but instead to somehow adjust it so you can tell when there is actual danger. (Eg: go to the ER after a TIA and take the meds you need to stabilize your body, and later on: listen to your body when it says don't want the heart monitor implant. Didn't listen and it caused pain and needed to be removed. Just like I knew would happen but overrode the fear, because I was in a trust-the-doctors phase. That is cool, but I needed to trust my body instead. And as I knew deep down would happem, the heart monitor found nothing, because that was not the problem. A painful month long lesson learned the hard way.)

I had to learn to slow down. I had to spend a whole year Not teaching yoga, and instead re-teach myself yoga that could work with this newly configured body. Only now a year later can I even conceive of taking yoga classes, because I needed to embed necessary adjustments.

I needed every meditation technique in my arsenal to make it through an incredibly long MRI sequence, which included a break to talk to the radiologist wherein no one seemed to be around and I was stuck in the machine. I have had to learn the ins and outs of arterial systems and how I can support them. The difference between dangerous and not dangerous chest pain, the different between emergent and symptomatic neurological systems. I have needed to talk myself out of the idea I was going to die at night in order to go to sleep.

In the midst of all this, I began teaching my writing workshop and coaching writers again, though I found I could not do that and my own writing simultaneously. Not enough energy or creative bandwidth. And I have had no energy to drum up any more business. I have had to learn patience. Anyone who knows me knows this is not a strong suit.

Then gifts: started painting again. Didn't see that coming. Connecting with people who live further away on Zoom. Being able to offer coaching and workshops to anyone because of Zoom. And while it is only now almost fully back, experiencing over many months my body heal. It has been healing in increments, but it's healing enough now that I can go off certain medications and have enough energy to contemplate going back to a large writing project. I still have some neurological symptoms, but they are a lot less. In order to help with all this, I had to do a deep dive into my nervous system and have learned a lot about ways to address default settings. And understand default settings are not the same as factory settings. They can be remapped, even if it takes a lot of time.

Gradually, gradually, I am creeping back out into the world, first on walks and on the phone, and now that I have been fully vaccinated, will also include seeing people in a room at the same time and in real space.

What inspired me to paint was walking many days a week in Inwood Hill Park, which is an old growth forest. The colors and light made me want to find my way back to oil paints, which are slow and tricky and weird. I started by sketching again and then was able to conceive of painting again, and have. And it's slow and weird and awkward returning to something I was so conversant in as a teenager. It is also delightful to be able to find my way in a nonverbal field.

I also wrote a new stage text and had a private reading of it, so will see where that goes. And more than all this, just a settling into the present and looking at it and enjoying what can be enjoyed. More times for coffee with my husband, endless napping and playtime with Ugo the Cat, the walks in the woods, the lack of need to Go Places and Do Things, and when possible just resting.

In the midst of all this I celebrated 34 years clean and sober with recovery friends from all over the world. Had a Zoom birthday, which was surprisingly wonderful, and we opened Christmas presents with my mother online as well. We even hosted our New Year's Eve meditate in the New Year on Zoom.

Now as I am finally healing (and the vaccine has helped with the last remnants of the long haul COVID symptoms), I can begin to actually go into the world past my neighborhood and a handful of doctors. It seems both thrilling and daunting. When trying to sort out the future, the "answer is hazy at this time" response is common. But that is OK. I don't have to sort it all out right now. We are all groping in the dark, wondering which opening is a sliver of light, which is an oncoming train.

Of all the gifts I have had to learn it is this: there is no way to outsmart life or somehow do an end run around limitations. I have begun to accept myself as I am, and as usually happens: whatever I accept immediately changes because of that acceptance.

There are a lot of unknowns on the horizon, but the fact is of course there always have been. It's just this year has made that painfully obvious for pretty much all of us.

The painting below is my most recent one and is in progress, but so am I so here it is. A friend said it reminded her of Little Red Riding Hood. The person in the distance had on a red hoodie, but I love my friend's vision. There she is, Little Red - tiny in the big forest, a wolf talking her off the path to pick flowers, who will then disguise himself as her grandmother, she being eaten alive but escaping, transformed doubtless by this experience. Did I think of all this when painting this? No, instead the energy of the drawing from the photo and my memory of the place along with listening to John Coltrane is what led the brush strokes and the color. Coltrane, another soul that transformed—his whole journey is recorded as jazz—a gift to this world that probably doesn't deserve it. But here we are anyway, walking along the path, unaware of when a wolf will appear or a kindly grandmother or someone or something that is a combination of both. But we will transform. Into some body we aren't sure yet how to move inside, new and fresh, enthralled once again by another green world.

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