Agoraphobia in the time of COVID19

Today, the world outside was vibrant. Emerald green and daffodil yellow, a chaotic spray of pink cherry blossoms amongst crimson tulips. Spring has erupted in chartreuse moss and warm sunshine, and yet it feels like the sun is gone.

I struggled with this feeling all day. A long-absent weight eased onto me, and I couldn’t recognize what it was. I roamed from room to room feeling hunted by this thing, like I needed to physically break the psychological thread slowly binding me in place.

And then I realized what it was, and why it bothered me so much.

This metaphor is going to get weird, but just…follow me with this for a minute.

Pretend you live in a huge house. It’s a lovely, rambling old thing, with a huge backyard, a wraparound veranda, a beautiful garden, and a picket fence you paint every year. You love this house, and you’re familiar with it. You grew up here. You know every creak, every noisy floorboard, what it sounds like in the winter and the spring. And all your life, you’ve trusted this house and its grounds, tending its flowers, minding its upkeep, utterly safe in the knowledge that this place is yours.

But one morning, you open the curtains to discover the world beyond the fence has disappeared. In its place is pure nothingness. A black void has cut off your home from the rest of the world, and it leaches at the edges of what you still have.

At first glance, this world is so unknown, so repulsive you’re certain it has to be a dream. You pinch yourself. You check the clocks. Check every measure of time and light and rightness and sanity to try and disprove what you saw. But when you look again, the void is still there.

Rattled, you close the curtains. The garden is still there, but a dark seed has taken root and you can feel its roots unfurling. Spreading. You feel more than know that the outside world is not safe. Every so often, you peer out, hoping things will have gone back to normal.

The black void is still there.

You decide not to look, but on the next day, you can’t help yourself. You hope it was just a dream. You hold your breath as you sneak up on tiptoe and snatch back the curtain.

The void is still there. Nothingness surrounds your patch of sky, your bizarrely sunlight porch. It looks so normal, and simultaneously so wrong.

Time becomes slippery. The clocks are no longer an accurate measure. Cut off from the world, you begin to think in recursive loops. The same way you pace the house, over and over, repeating the same actions in the hope of retaining some sense of normalcy.

But every day, the void swallows more of your world. Each glance outside reveals some new loss. It spills over the fence and into the yard, creeping inch by inch. It takes the garden, and then the walk. Now, the void laps at the bottom of the stoop. An ocean of black encroaches upon you, and you know it’s just a matter of time.

Day by day, it invades. Endless black spills in from under the door, dismantling all sense of safety. Now, you are a hunted animal, struggling to leap from one remaining room to the next. You know you are cornered, but there is no escape.

Not until it pins you in a single room.

Out there, it is not safe. Everything you trusted and found comfort in has disappeared, taken by this nameless thing. It’s so vast and endless that you don’t have any idea how to fight it.

Where you once lived safely, you now live governed by fear.

Nothing else.

It’s just a story, just a metaphor, one I used to describe to therapists and family members what happened when I got trapped in my house.

Agoraphobia has bitten me several times to varying degrees. The first time it struck, I didn’t know what it was. I only knew that nothing was safe anymore, and the only place that did feel safe was home. But even that sense of safety began to crumble as the fear continued to grow.

First, I couldn’t leave the house.

But then I couldn’t be around my family. I locked myself in my room and waited until everyone was asleep to come out. At times, the room would close in on me, too, and I would crawl under my bed, trying to hide from a thing I couldn’t understand.

I did not know what agoraphobia was, or panic disorder, or depression. What I felt was so convincing that it truly felt as though I would die if I took one step past that last threshold of safety.

But it happened again and again. The first time, at 13, again at 15, again at 17. It chased me out of my first attempt at college. And I mostly kept it at bay, but it would come back to varying degrees over time.

It returned in my late twenties, and after a protracted battle, I managed to overcome it.

Now, with COVID19 sweeping the globe, it is a terrifying specter again, lurking at the edge of the yard.

What I am trying to remember is that collectively, we are all experiencing this. Our access to the outside world has become progressively limited as the virus spreads. Unlike the irrational fear of agoraphobia, this threat is real.

In some ways, it is comforting to see others reach out and try to help each other cope. Because most of us aren’t. We’ve lost our jobs. We’ve lost our gathering places. We’ve lost physical human contact. Even when we do go out, there is an element of danger that causes me pain to watch others struggle with. Things that I once did out of irrational fears are now necessary precautions. Gloves. The endless washing. Wiping down groceries with disinfecting wipes. Avoiding others with a very real fear of terrible consequences.

At the same time, though I know it is rational and necessary, repeating the pantomimes of agoraphobia is deeply terrifying. Watching this thing consume the world the same way it has consumed me in the past is something out of my worst nightmares.

I could not identify why I was struggling so badly with quarantine.

But now I do, and now that I know which enemy I can fight, I want to help others who might be struggling with isolation the same way I have over the years.

Here’s what helped me.

Isolation is the worst part. Try to stay in contact with others. Voice messages are a great alternative to phone calls. Group chats are also helpful, especially if you struggle to make conversation.

Limit your exposure to bad news. We’re all drowning in updates. Use browser extensions to blacklist subjects. Mute or unfollow where you have to. Tell people you’re overwhelmed by it and can’t talk about it. It’s okay to set those boundaries. You’ve got to be able to take care of yourself.

Stick to a schedule. Make a to do list for the day. Cross off each task you manage. Mine is brimming with small tasks, because I need the sense that I’m getting things done. There are lots of apps for this. You can also reach out for accountability to friends. Like, “I need to accomplish at least five tasks. Will you talk to me while I clean the kitchen?” Challenging each other with tasks can turn it into a game. Making sure you stick to static wake times, meal times, and bedtimes is HARD, but it helps. The goal is just to try to make sure you’re taking care of yourself. Which leads to…

Take care of yourself. This is why I have to make a daily to do list. I have to remind myself to shower, brush my teeth, take meds, drink enough fluids, manage pain, make sure I eat.  Baseline self-care is one of the first things to go for me with the onset of agoraphobia, so it’s one thing I try to remain vigilant of.

Set aside “comfort time.” This can be sitting with your cat, reading a book, playing a video game, cuddling with a loved one, or watching a movie. In my case, it’s usually wrapping myself into a blanket burrito in a dark room with some rain noises. The goal is to really, truly, physically relax. Reduce stimuli–dim the lights, turn down the volume–and do things that make you feel better. Light a candle. Soak in the bath. Eat some chicken nuggets while soaking in the bath. Whatever, as long as it’s something that actually feels good.

-Distractions are going to take up the bulk of your time. Some of them will be practical, useful distractions, and some of them won’t. Try to switch them up throughout the week. You don’t want to get burned out on one activity.

-Set aside “stress time.” All that pent up worry and frustration has to go somewhere. Write it down. Let yourself get it all out. Rant to yourself in the car. Scream into a pillow. Sing along to something loud. Go for a run. Sweep your kitchen. (Cleaning is generally my go-to.) Go for a run. Or do jumping jacks in your backyard at 3 AM. It’s gonna look weird, but if it works, it works.

ASK FOR HELP. When you get to a point of being too worried, too scared, too overwhelmed, reach out. Crisis text lines are a thing, and they are WONDERFUL. Text 741741 to talk to a crisis counselor. They’ll talk you through what you’re experiencing and help connect you to the resources you need. Mental health is critical for all of us right now. It is absolutely valid to feel overwhelmed, hopeless, and afraid. You don’t have to do it alone. More resources specific to COVID19 here.

While you’ll often feel alone and scared, please remember you aren’t alone. So many of us are in this together right now, and I see so many people leaning on each other, helping each other, doing their best to make sure that we all get through this.

I’m telling you this as much as I’m telling myself this: there is a collective good here worth saving. It isn’t all doomed. But the only way out is through.

Please take care of yourselves out there. I hope we all make it to the other side of this thing alive and with more empathy and compassion for others. More ingenuity for fixing the problems that have long affected our communities and our world at large. Yes, so many things are falling apart, and that’s terrifying. But we can get through this. And no matter what it looks like on the other side, we will rebuild. We always do.

Much love to you, reader. Thank you for making it this far.

an answer to grief

It’s February, but the weather around here has been more of a false spring. Balmy rains and warm weather tricked the trees into blooming early, and I wanted to buy into it. Last Thursday, I propped open the back door while I was in the dish pit, and kept finding reasons to go out to the bailer. It was sunny and warm, and it felt like winter was finally at an end.

Two days later, I woke to a snowstorm I had no choice but to drive through. Four hours total, round trip. Heavy flakes coated the car as I packed it, and I looked up the road. The mountains before me were already white with snow, haloed in gauzy clouds.

I kissed my sleeping love, scribbled a note that I’d be home around four, and then I drove into the snow.

Coasting along 40 and 26 through that white, silent landscape, I felt small and vulnerable. There was a persistent clunk from the floorboards I had yet to identify, and every skid and slip of the tires tightened my knuckles till they hurt. The snow worsened, blinding in parts, and at one point, I pulled over to catch my breath. A hush fell over the car when I cut it off, and for a moment, all I could hear was that soft pitter-patter of snow.

I stepped out and looked up.

The dark rock wall beside me was coated in icicles half as big as my car. Snow blanketed the boughs of trees above me, a gradient of pale grey and dusky purple in the shadows, and I thought about a game my mother used to play with me when I was a child. She’d ask me what colors I’d use to paint what I saw. Black and white were not allowed. “You have to see past that,” she’d tell me. “What do you see?”

It took me a while to figure out the trick I use now. With the distractions of light and shadow, it’s hard to see the individual hues. If you unfocus and let it blur, all you can see are hues. A palette, a gradient of vivid color bleeding together, utterly devoid of outlines. I didn’t have the vocabulary I needed at first to know what paints I’d need, but I learned. Burnt umber, raw sienna, phthalo blue, alizarin crimson. The lesson stuck with me, and thirty years later, every time I see something so beautiful I wish I could paint it, I deconstruct it the same way.

What I saw: burnt umber, Payne’s gray, indanthrene blue, neutral gray, Prussian blue, all mixed with titanium white. The snowy world around me was cast in a strange twilight, a softness to it that felt utterly unreal.

I thought of taking a picture, but it felt wrong. I knew it wouldn’t truly capture what I saw. So I took that moment with me, and I left.

On my return trip, the snow had already melted. Sunlight returned, banishing that soft, strange world, and I felt a sense of homesickness for the moment I’d lost. The rain returned, and now, almost a week later, the trees are budding again. Violet crocuses have erupted along the sidewalks, and daffodils are slowly lifting their heads from wet earth. It remains to be seen which way the weather will go.

I’m not the only one wondering. Weather has become a common concern. All around me, people murmur about climate change and politics. Doubt and terror of living in a world seemingly governed by chaos.

“Everything is out of control.”

A block up, activists line Pack Square. The signs differ by the day, but they are always a call to action, begging the rest of us to wake up. Change things. Go vegan. Protect our earth. And I think about them as I pour ice into cups. I think about Antarctica disintegrating, of people drowning from floods and unprecedented hurricanes. I dump coffee grinds into the compost, over and over, and I wonder how many of the people around me know we are currently living in an extinction event. How many of them know the hard facts of what we’re in for. How bad it’s actually going to get.

I take the compost and the recycling out, and I remind myself of the reasons why I get out of bed.

Every day, I walk past a graffitied bumper on my way to work. GRIEF in red, stark against white concrete. It’s not the only one of its kind. That message is everywhere in this city, scrawled in the same hand, seemingly everywhere I go. GRIEF, like an answer to a question unasked. A confirmation of why I’m here.

A wave from an invisible hand.

I saw it again today. Yellow, this time, bright against the black plastic of another gas pump. I paused, as always, and wondered who it was. Why they wrote it. What they’d been through.

I wished I could wave back. Say, “I see you.” Say, “I see it.”

Say, “Me too.”

*

“Interesting test results” was the first thing my doctor said to me when I walked into his office. “Come on in.”

I sat down and folded my hands and waited. Worried. Watched him scribbling furiously. Worried some more.

“So.” He handed me a sheaf of papers. “I was right.”

I flipped through the papers, but didn’t understand.

“The reason your medications aren’t working is because they can’t. Go to the last page.”

I did.

This individual is heterozygous for the C677T polymorphism in the MTHFR gene.

MTHFR. My mouth quirked.

“Now, check out page six, upper right corner. See where it says ‘poor metabolizer?”

CYP2D6 enzyme activity: None.

“That combination right there is why nothing works. Your brain isn’t methylated enough to properly regulate your neurotransmitters. That second mutation? That’s where the weird side effects are coming from. Put the two together, and we have the reason why you haven’t responded to treatment. But it also tells us how to fix that.”

I turned the pages, trying to understand. I’d studied psychology as an undergrad, and I had developed familiarity with psychiatric medicines over time in treatment. Few, if any, had benefited me. Therapy was effective, but it wasn’t a cure. I’d manage to maintain a normal baseline for small stretches, and then inevitably crash again. The diagnoses changed, over and over, according to my reactions to medicines. The prognosis was never good.

Believing you are an unsolvable problem is bleak at best. I’d been more worried the results would come back completely normal. But there on the page were answers. Entire classes of contraindicated medicines that I’d known from my own reactions didn’t work, but doctors had run me through anyway. Years of treatment that had been a waste of time, and we didn’t even know.

I fought back tears.

“This is fixable?”

He smiled.

“It is now.”

*

2019 wasn’t a kind year.

But neither were the years before it.

Between 2016 and 2018, I lost just about everything. Friends. Family. My home. My car. My hopes. My dreams. All of it crumbled. I couldn’t make it make sense, and my attempts to cope with it were poor at best.

I don’t think anyone necessarily copes well with huge losses. What you thought was solid no longer exists. You start to doubt whether it ever really existed in the first place. Others attempt to help, advise, console, but they can’t get through it for you.

The person who has to learn how to live with it is you. And that means a lot of grief, a lot of redefining what you thought you knew. A lot of burials. Rethinking the choices you made, and whether, in hindsight, they were the right ones.

In 2019, I spent a lot of time sleeping in my car. I drove between Greenville and Asheville, trying to outrun my own grief. There was so much of it. I’d spent so much of my life in Greenville. I had so many memories there, and after Pru died, too many of them were painful. It was easier to sleep in my car on a cold February night before a work shift than sleep in a warm, comfortable bed in a house I didn’t belong in, because it reminded me of the person I’d never be again.

I was becoming someone else, but I didn’t even know who that was. It was terrifying.

Now, a year later, I know why it scared me.

I am the one who decides who and what I become.

The last time I posted here, I’d decided to move to Asheville. I didn’t have a solid plan, but when was the last time a solid plan had worked out? I knew what I needed in order to make the move, and as long as I could keep up with my bills, I could make it work. It would be difficult and scary, but difficult and scary were the norm. Things have never been easy, but if I’d survived that far in Greenville, surely I could do it somewhere else.

I found a job in Asheville. It didn’t work out. I clawed my way through three weeks of interviews and zero callbacks till I found another that did. I’ve been slinging coffee in a cafe in downtown Asheville since then, surviving mostly off tips. Serving isn’t easy, especially with chronic fatigue, but I manage. I walk the mile back to my car, and on the drive back, I call my mother just to hear her voice.

Ten years ago, I was living in terror of watching her die.

But she made it. She’s healthy and well and tells me about her latest project with the gardening committee, the latest news with my siblings, all the things she did that day.

I started this piece with the idea that I’d say something about grief. If anything, it’s this:

My mother saying “I love you, too” before she hangs up is worth every ounce of grief I went through ten years ago.

An unexpected hug from a new friend is worth the struggle of trying to get close to people after being hurt.

A suspended moment of awe on the side of the road, marveling at snow in a warming world, makes me want to fight for it.

Finally getting a solid answer on what’s wrong with me, after years of feeling hopeless and unfixable, was worth fighting this hard to stay alive.

And struggling to write this, after months of feeling like I’d lost my voice, reminded me why I say anything at all.

To the artist who reminds me why I endure grief:

Thank you for telling me I’m not alone.

Thank you for reminding me why I’m doing this.

It’s a scary, chaotic world out here, isn’t it?

But we’re alive, and we’re in it. We can change it. We might not be able to fix it, but we can remind each other not to give up.

Thank you for that.

Maybe I’ll buy a marker, so I can give you my answer. Same as yours, just one word.