A year lost

“…Wherever you are is called Here,/And you must treat it as a powerful stranger”

“Lost” by David Wagoner

It’s been a year. 

Today. Today makes one year.

And while I celebrate surviving that year, I have to name it Lost. Taken or Stolen might also work but that victimizes my situation and I am not here for that–that allowance would keep me stagnant in anger and helplessness. I cannot be about that anymore.

Lost. Lost speaks truth on so many levels. Most obvious of those, ground floor entry so to speak, the impact of my battle with Long Covid sapped my energy and muddled my brain’s acuity leaving me with only faded and blurred watercolor memories of the last year. So many things happened–events, trips, the life of my family–and while I was physically present I was also encapsulated in a bit of a Long Covid forcefield shielding my mind from the details, the weight, the value and thus the fullness of anything.

Lost. Second floor. Abandoned by my sensibility. For most of the year, my emotions neutralized themselves. I felt no surges of excitement, sadness, anger, anxiety, joy…which sounds sort of great in some ways, right? No anxiety for the person who has always struggle with anxiety is pretty fantastic, yeah? And I guess in some ways it was a nice departure. My body was dealing with an erratically racing heart as well as so much inflammation and overwhelm that it could not also manage inflamed emotions. Rationally, I get that. But honestly, I just felt radically empty most of the time which is why I assume the year doesn’t exist in vivid memory. Without emotions to tie to events, to anchor them inside of me, they just sort of float off into the distance leaving a vague shadow behind.

Lost. Third floor. And this cannot be overstated and is far from the cliche it sounds like: I lost myself. What does that mean?

Well, it is hard to quantify and qualify in a way that relates the compounding weight of the truth of this statement. Most obviously, in losing my ability to be fully present, to feel vibrancy of any shade of emotion, to think without roadblocks emerging between each and every thought, to participate in conversation without confusion, to remember even the simplest but most important details (this list goes on a while, I’ll stop here), it was impossible not only to be myself but to remember what it felt like to be myself. I want to emphasize that. I wasn’t just less than myself due to illness–I have been there before. I suffer with other chronic “stuff”. But I was lost inside of myself–I could not remember what it felt like to be the person I was before that positive test. Not on any given day did I feel fully me. And not on any given day could I harness the hope of finding that person because my energy had to be focused on simply getting through the day in the shape I existed. Exhausted already, I further laid waste to my energy supply in creating a mask that would hide the truth from those around me.

The things by which I identify myself–cooking, reading, writing, exercise, smiling, ridiculous optimism–had to be either relearned,  modified, or set aside. 

Cooking, my favorite way to show my love to others, transitioned into a chore. On my worst days, just the thought of standing in the kitchen and thinking through steps in a recipe, left me frozen in how to proceed. I could not desert cooking completely, but my skill and joy in it certainly deserted me.

As a reader, I found myself having to adopt new reading practices in order to maintain. Gone: my pencil in hand adept at skillful annotation and noting depth and nuance in a text. Adopted: a letting go of disappointment in myself for just reading the story without deeper investigation because I knew that reading in any form was good for my brain’s recovery.

As a writer, well, if it wasn’t mandated for work, it probably didn’t happen. I could not face my loss for words, my confusion mid sentence, my inability to see a piece through. A singular email at work could take me an hour to construct; I had no energy for personal writing. I lost my confidence in staring at a blank screen with a  brain that felt equally blank and hid behind my illness rather than writing my way through it. 

In a fleeting attempt to maintain some semblance of my former reality in the face of so much loss, I tried to reinsert my pre-Covid, relatively intense, exercise regimen (even if watered down a bit). I quickly learned that I could no longer exercise during the work week if I wanted to be able to function in the world. I had to live inside of what my doctor called “the energy envelope” which meant instead of HIIT training and weightlifting, I was walking…and not during the work week. My physical strength began to mirror my eroding mental strength bewildering me further in who it was my body would allow me to be.

The rest of the list here–smiling…optimism–existed mostly because I reached deep inside to exude a picture that would bring about fewer questions about how I was really doing. A reach that left me fatigued beyond measure.

Lost. Top Floor. My coping strategies evacuated with everything else that comprised who I had previously been. All those years of managing chronic illness while also maintaining my strength of perseverance…all those skills honed over years even in situations like Long Covid where no answers or cure were clear…none of them could be called to mind and put into practice. I tried. Believe me, I really tried. But, honestly, that perseverance took so much more energy than I had inside of me. Something as simple as starting an anti-inflammatory diet (something I have done successfully before) required more thought than I could see through to fruition. Eventually, I stopped trying to cure my Long Covid symptoms. I preached patience to myself because it was the only tool in my arsenal that I could muster. I allowed myself the grace to wait rather than shaming myself for not fighting harder. 

So I waited. Impatiently patient. Resigned to maybe never seeing “me” again. Accepting of the need to rebuild from scratch.

And then, I guess you could say I snuck up on myself, because I never saw or felt “old me” resuscitating herself. And yet, she did.

And so here I am, a year later and I am cautiously optimistic that I am on the other side. In the last month of this year, I have read a book with the complexity of thought that mirrors (almost) the way I might have before…the inflammation that has flooded and plagued my legs and hands has receded…the cardboard has retreated from its post as a blockade between my thoughts leaving them feeling connected, even if only by a thread…I have found myself more fully present, laughing effortlessly, enjoying small moments and not needing to take a nap because of the effort…I have felt like myself for the first time in nearly a year and for that, there are no words. It’s not perfect. There are still hurdles to clear and some days are harder than others. But this moment brings honesty to two things I lost sight of this last year.

Gratitude and Hope.

 

 

hope’s effort

Chronic and invisible illness has become a daily struggle rather than an intermittent one. It is exhausting, often defeating, and always frustrating. But when I am able to channel it into writing, somehow that tension and discomfort is eased. I always share the poetry of others her but rarely my own. Today that is different which brings another kind of unease. But nonetheless…it is written (and unedited), so here it is, as it came to mind and then to the page.

hope’s effort

I hadn’t imagined this particular evolution

of days. This—

well, it wasn’t foreseeable

(a game Life plays, with a smirk, knowing

its caprice will always confound human ego).

Exhaustion permeates and saturates the hours,

restricting the freedoms and felicity Joy once knew

but took for granted in her attempt to live

without bounds.

And yet…

A thread of hope rises each day—

a mirage that cleverly deceives the mind

into believing today will be different—

better. It’s what I hold to with a fervor so

vibrant that it seems to be Joy (regained) or even

Wellness (restored)—

(Is it a smile she’s wearing, they wonder, or just

gritting teeth clenched tight

in fear of revealing ___________?)

But, instead it’s just my soul—

hoodwinked, and the believing,

well, it’s kind of tiring.

Hope, these days, engenders new depths of fatigue

because the thread is too thin and elusive,

impossible to grasp

each and every, and some days,

well, I miss it completely. It floats

away—shimmering aloft, visible but…just…

out of reach…

And yet…

I always wake in search of it,

again, because without it,

I’d be laid flat in the blindness

of the not-knowing haze—of the fog

that necessitates a beacon to avoid

getting lost, or worse, giving up entirely—

which is always an easier reach—a falsely 

tangible promise of ease, an empty promise, that,

well, evaporates the moment acquiescence is 

accepted by the mind, the body in need of something, 

anything simpler than the work required in facing, 

in maneuvering the obstacles which can’t be overcome

in a single day…the work required to 

persevere through darkening shades of complexity.

And so….

When the thread of hope rises

each day, each day I will reach

for it, I will cling to it,

until its promise is fulfilled…because

the alternative, well, that’s not living, that’s 

a shadow life…a shadow of life…

that’s existence…wasted,

a promise left waiting—

–unfulfilled in my impatience for something 

immediately better, 

which, well, blinds the eye to all that is still present,

to the thread of hope rising and waiting for the reach,

each day.

And so…

I grab hold…again…and again because despite 

my body’s fatigue, my brain knows this truth—

I am not helpless, hopeless in the face of ______.

Life will change, circumstances will alter,

that does not mean they are worse—

only alive.

And that challenge, of being alive, is always worthy of 

Hope’s effort.

(all gratitude to Anthony Doerr and his novel Cloud Cuckoo Land as the line “A thread of hope rises,” which appears on p. 144 of the novel, was the inspiration for this piece)

patience

I don’t remember myself.

I’ve been sick before. Invisibly ill in insidious ways.

Lonely, as those surrounding me tried to understand, but without experience, had no foundation to allow for true belief in the turns my story had taken. Frustrated, as no one seemed able to resolve my ailments or even to incite a brief remission, a bit of respite, a break. Exhausted, afraid, broken-hearted and broken bodied. All of this. I have been all of this before in the midst of illness and yet despite the array of emotion, I’ve always been able to remember myself…for better and for worse.

The constant specter of who I used to be, what I used to be able to do haunted me without reprieve. I longed for the previous ease of propping up a smile…for the freedoms of frivolity without worry for an unforgiving symptom set…for working out without abandon because I was in charge of this body and we would be fit…for being able to honestly answer “I’m well” when asked how I was doing. I knew who I used to be, what I used to have, what I used to be able to do and I was jealous of her. Constantly. Achingly.

It took years to accept the terms of my new circumstances. To accept that the girl I used to be was still part of who I was becoming rather than extinct. That she was fully aware she was participating in a merger wherein her strength and joy and skills and hope were maintained and sharpened in this new fire faced. She populated my everyday though her life looked different. It took years to own and honor that there is no old me and new me, only me in this moment and I am always going to be in some phase of evolving into who it is I am meant to become…to honor that I still have control over the shades and hues I show and shower. But this process always included recognizing and celebrating who I’ve been along the way. And recently, that has become more difficult.

This battle back against what has evolved into Long Covid is different from all the other times I’ve faced health challenges (and there have been many). This fight has dissolved much of what I knew of myself. My brain is so exhausted and so foggy that I find myself behaving, responding, acting in ways that feel unrecognizable, strangely resistant to careful reflection and observation, interrupted moment to moment with absence of memory for what comes next, but it’s all I have the energy to produce. I find missing the small goodness of the beauty on the horizon, because I am tethered instead to what is currently right in front of me. Don’t look up or around or too far forward or back or you will lose what it is you have to do in this singular moment. Blinders are required but the blindness harbors despair for as missed moments pass, they grow heavy. I feel sometimes as though I’ve become a completely new human without the reference of experience and knowledge of who I was, of who I’ve been, there to guide me. All of my energy is focused on surviving days, getting through them, taking care of all those who count on me as best I can, which is great but I know that for now, I am not enough and also a bit of a stranger, even if only to myself. There are small touches in my manner that have evaporated and all of me is too depleted to attempt any sort of rebirth or refurbishment. Simply getting out of bed and forcing myself to get ready for work is enough to warrant a nap, but there is no time. I have to simply keep taking steps even when I have to fabricate the energy to do so.

And so I proceed having left my former self in the shadows with the hope that she will be waiting for me when I am able to pause, to take care of myself, to fight harder for recovery from something that very few fully understand. I hope that she will be there when it is time to measure this process of becoming. I repeat daily that this is just for right now, but right now exists for an undetermined period of time and there are pieces of my personality that I am not willing to sacrifice to Covid. Intrinsic empathy, generous kindness, careful words and reflection. I don’t need to be the same person I was before. That would be a denial of the experience and all it extolled. I lived it and am living it. Denying it later would make it all worthless. But I need to heal enough to deliver those elemental sparks back into being. That is the day I long for.

Until then, I will keep reminding myself to go slow and that today is not tomorrow yet. Change will come.

I can be patient.